Rights in Practice for People with a Learning Disability: Stories of Citizenship 9819955629, 9789819955626

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Rights in Practice for People with a Learning Disability Stories of Citizenship Edited by  Liz Tilly · Jan Walmsley

Rights in Practice for People with a Learning Disability

Liz Tilly  •  Jan Walmsley Editors

Rights in Practice for People with a Learning Disability Stories of Citizenship

Editors Liz Tilly Building Bridges Halesowen, UK

Jan Walmsley Jan Walmsley Associates Aylesbury, UK

ISBN 978-981-99-5562-6    ISBN 978-981-99-5563-3 (eBook) https://doi.org/10.1007/978-981-99-5563-3 © The Editor(s) (if applicable) and The Author(s), under exclusive licence to Springer Nature Singapore Pte Ltd. 2023 This work is subject to copyright. All rights are solely and exclusively licensed by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors, and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. Cover design by Chrissie from Building Bridges This Palgrave Macmillan imprint is published by the registered company Springer Nature Singapore Pte Ltd. The registered company address is: 152 Beach Road, #21-01/04 Gateway East, Singapore 189721, Singapore Paper in this product is recyclable.

To everyone fighting for people’s right to be equal citizens.

Foreword

‘Equal rights … with choices equal to others.’ This is from Article 19 of the UNCRPD—the article that outlines the right to live independently and in the community. The Article describes people having support to live in the community, like any citizen. That right of people with learning disabilities having the same and equal choices as everyone else is powerful if we all properly take it on board and see it as our responsibility to make it real. Learning Disability England champions everyone’s entitlement to a good life, enjoying the rights most people take for granted. Like the right to a home, living with people they have chosen to live with. Yet I still hear in my work of people being offered ‘placements’, not support to find a home and build their own good life. This book asks us to challenge ourselves if we’re in any position to change how we or others act, the systems we adopt or the attitudes we accept. The stories show what is possible, how people are making rights an ordinary reality and offers us a way to learn from them and make true citizenship more than just a dream for people with learning disabilities. Thanks to Liz and Jan and the more than 100 contributors, we can learn from years of work, see journeys to achieving change and get some of the stepping stones to everyone being able to live their life built on human rights. vii

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Why shouldn’t ordinary enjoyment of rights happen? Some people already enjoy those, and these stories can help spread that message ‘equal rights … with choices equal to others’. Learning Disability England Wakefield, UK

Samantha Clark

Acknowledgement

We are very grateful to: The RTR Foundation for a grant which paid for our book project costs and meetings. All the contributors for their stories and writing. Sara Aldridge from Building Bridges for coordinating this huge project and helping us get to the finish line. And finally, to Professor Dorothy Atkinson for being our critical friend.

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Contents

1 I ntroduction  1 Liz Tilly and Jan Walmsley 2 E  ducation and Learning 13 Kelley Johnson 3 S  elf-determination 45 Liz Tilly 4 S  afety and Protection 75 Liz Tilly 5 I ndependent Living 99 Lindsey Allen 6 H  ealth and Wellbeing123 Rohhss Chapman 7 W  omen and Family147 Liz Tilly

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8 T  ravel and Mobility167 Jan Walmsley and John Hersov 9 C  ommunity and Culture183 Hazel Morgan and Nicola Grove 10 W  ork and Money209 Jan Walmsley 11 L  iberty and Justice243 Tracy Hammond 12 E  quality and Recognition261 Jan Walmsley 13 Final  Words from the Editors291 Liz Tilly and Jan Walmsley A  bbreviations295 A  ppendix297 L  ist of Contributors299 I ndex305

Notes on Contributors

Individuals Lindsey Allen  Lindsey has worked in the learning disability and autism sector for over two decades. She is currently a Programme Manager at the British Institute of Learning Disabilities (BILD) and has a special interest in health inequalities for people with learning disabilities who may also be autistic and embedding coproduction within an organisational structure. Lindsey is passionate about ensuring that people’s human rights are upheld and that everyone’s voices are heard. Kate Brackley  I work for British Institute of Learning Disabilities (BILD). I am the Learning Disability Advisor and Educator. I am the Chairperson of an advisory group called BILD FOR THE FUTURE. This is a group where people with learning disabilities discuss different views and opinions about learning disability areas. We also help people to provide good coproduction across BILD from the beginning. We work closely with different organisations in the learning disability sector. I am also a trustee for BILD. Rohhss Chapman  I have spent my family and working life involved in supporting and campaigning for the rights and self-advocacy for and with people with learning disabilities and autistic people. My work has been in the voluntary sector, in community groups, with individuals and in academia. My PhD was xiii

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undertaken through an inclusive research perspective with the Carlisle People First Research Team at the Open University (2006) studying the role of the advocacy support worker across UK self-advocacy groups. Alongside my colleagues we have travelled extensively to present on and learn about others’ experiences across the country and around the world. I have written a number of academic publications about policy, self-advocacy and related research, including ‘Sexuality and Relationships in the Lives of People with Intellectual Disabilities’. The importance of people’s own stories and experiences has always been central to my work. I now work as a psychotherapist, where I run my own local general practice which welcomes neurodiverse clients. I am also involved in community counselling. Louise Townson and I continue to work in friendship and collaboration. I gained a Lifelong Achievement Award at the Cumbria Social Enterprise Awards in 2021. Nicola Grove  Nicola is a consultant and researcher in disability, communication and storytelling. She has worked as a school teacher, speech and language therapist and university lecturer, specialising in the field of intellectual disabilities. She founded the charity Openstorytellers (https://www.openstorytellers. org.uk) in 2009, and in 2020, with support from the Open University and the charity Generate, she set up the website Surviving through Story to collect pandemic experiences of people with intellectual disabilities and autism. She has worked with storytellers, educators, therapists and self-advocates in Japan, Australia, South Africa and Canada, and written books and papers on literature, storytelling and sign language, including Ways into Literature (2005), The Big Book of Storysharing (2014), Manual Sign Acquisition by Children with Developmental Disabilities (2019) and Storytelling, Special Needs and Disabilities (2022). She is the director of the Storysharing Programme (https://storysharing. org.uk), an honorary senior lecturer at the Tizard Centre, University of Kent, and a member of the Social History of Learning Disability Group at the Open University. Nicola’s greatest teachers continue to be people with severe and profound intellectual disabilities. John Hersov  John has worked extensively in the field of advocacy for people who have learning disabilities for almost 40 years as an independent freelance consultant and facilitator. His speciality has been to work with people with learning disabilities, exploring together the ways they would like to see things develop and change in their

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own lives and identifying the most effective (formal and informal) organisational structures for these views to be represented. He has been involved with the development of the self-advocacy movement in the UK since the early 1980s. This included supporting the Mencap London Division Participation Forum from 1982 to1990, which ran conferences and circulated videos of their work around the country; being one of the co-­ supporters of London People First from its beginnings in 1984; and facilitating self-advocacy workshops and conferences across the UK for more than 20 years. From 1981 to1998, his spiritual home was the City Lit Adult Education Institute in Central London where he taught ‘Speaking Up’ classes for adults with learning difficulties, which now feel like ‘a conversation about life that lasted 18 years!’ From time to time in his current work around London, John encounters former students for the first time in 20+ years. They usually remember each other, in a good way! He has worked with statutory and voluntary organisations at a national and local level in adult social care, social services, housing, health, education and self-advocacy. The work has included staff training, supporting service user involvement, working with community-based groups, chairing advisory groups and conferences, supporting the work of Partnership Boards and producing reports and contributions for publication. Kelley Johnson  Kelley is an internationally recognised scholar in the fields of disability, institutional closure, social inclusion, rights and gender. She holds honorary professorships at Deakin University and University of New South Wales (UNSW), Australia. Until 2016 Kelley was Professor of Disability and Policy and Director of the Social Policy Research Centre at the UNSW. Prior to this appointment she was Professor of Disability, Policy and Practice and head of the Norah Fry Research Centre at the University of Bristol, UK. Kelley has held visiting positions at the University of Zagreb, Croatia; the University of Iceland, Iceland; and National University of Ireland (NUI), Galway, UK. She has researched extensively in the field of disability with particular focus on undertaking inclusive research with people with learning disabilities. This involves people with disabilities as active researchers undertaking research about issues which are important to them. It aims to support people with disabilities, to have a heard voice and to work for change in policy, practice and advocacy. Her most recent publication is Kakoullis, E and Johnson, K (2020) Recognising

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Human Rights in Different Cultural Contexts. The United Nations Convention on the Rights of Persons with Disabilities (Palgrave Macmillan). Hazel Morgan  Hazel’s younger son Peter had Down’s syndrome and profound and multiple learning disabilities. She has written two memoirs: Through Peter’s Eyes (Arthur James 1999) about his childhood and The Joy of Knowing Pete (YouCaxton 2022) looking back on his teenage years and his untimely death aged eighteen. Subsequently she became a co-director of the Foundation for People with Learning Disabilities, then part of the Mental Health Foundation, overseeing research programmes and service development projects. She has been a trustee of People First Dorset since the end of 2015. Liz Tilly  Liz is strongly committed to the full inclusion of people with learning disabilities in all aspects of life and has had regular professional and social contact with people with learning disabilities for over many years. Liz is the founder and director of Building Bridges Training, a social enterprise. With people with a learning disability they co-deliver training, produce good practice guidance and easy read information and do research focused on making a difference for people with a learning disability. Liz also set up and continues to volunteer with the charity Jigsaw Events, which provides people in Sandwell with social and leisure opportunities. She also works as a visiting lecturer in local universities and is a trustee of Learning Disability England (LDE). Previously she founded and was chief executive of a voluntary organisation in the West Midlands which provided a wide range of services and opportunities for people with learning disabilities. Prior to this, her career was in special education, teaching 16–19 year olds. Jan Walmsley  is an independent consultant, teacher and researcher with honorary Chairs at The Open University and University College Cork. She is a champion of the right of people with learning disabilities to enjoy a good life. Through publications, in particular as a regular contributor to Community Living, through blogs on Jannie Wannie WordPress account and through academic books and papers. She is a Trustee of Learning Disability England. She has been a Trustee helper at My Life My Choice, Oxfordshire’s self-­ advocacy charity, since 2012. Her role is to support the Board, all of whom have learning disabilities, to be effective Trustees.

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She pioneered inclusive approaches to teaching and research with people with intellectual difficulties and enjoys an international reputation for work in this field. Her publications include Inclusive Research with People with Intellectual Disabilities: Past Present and Futures (2003), with Kelley Johnson, regarded as the key text even to this day. She was a founder member of the Open University’s Social History of Intellectual Disability Research group (founded in 1994) which has an inclusive approach to furthering the history of intellectual disability through publications and conferences. Her recent activities include: Big Ideas that Changed the World of Disability—an initiative funded by the Open University, University of Leipzig, University of Koblenz and University of New South Wales. Online workshops introduce people with intellectual disabilities to important theories including the social model of disability, Marxism, eugenics, social role valorisation and Bourdieu which influence the way disability is framed. In Response: she manages this initiative of the British Journal of Learning Disabilities, which offers self-advocates the opportunity to respond to an article published in the Journal. Life Story Workshops: she has developed programmes to help people reflect on their own histories—a recent one is reviewed here https:// www.theguardian.com/social-­c are-­n etwork/2018/apr/30/theatre-­p roject­intellectual-­disabled-­artists-­isolation-­austerity-­madhouse-­re-­exit

Groups Barod  Barod Community Interest Company is a training and information company. We are a cooperative formed in 2013 when two self-advocates and two friends said ‘Barod! We are ready, no more work preparation training for us!’ (Barod is Welsh for Ready). Our members (owners), workers and directors are an equal mix of disabled and non-disabled people. We specialise in bridging the gap between public and private sector organisations and the people they need to be talking and listening to. We are researchers, app designers, easy read writers and film and podcast creatives with a passion for a more equal world. We earn our money through real work for real pay, and we are all paid the same. We are based in South Wales and grew out of the People First movement in Wales.

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Contact: Mal Carnsdale 16 Spilman Street, Carmarthen, SA31 1JY [email protected] www.barod.org Twitter: @Barod_CIC LinkedIn: https://www.linkedin.com/company/barod-­community-­interest­company/ Barod—Spreading Ideas, Changing attitudes BILD  For 50 years, as a registered charity, BILD has protected and supported the rights of people with learning disabilities. We want a more fair and equal society where everyone has the same rights and opportunities. By working in partnership with people with learning disabilities and autistic people, drawing from research and evidence, we identify best practice and what works. People want the right kind of support so they can make choices and decisions about the things that affect their lives. We can help you provide this. Brighton and Hove Speak Out  Brighton and Hove Speak Out is an independent advocacy charity established in 1998. We support people with learning disabilities to speak up and take action about things that are important to them, working towards a fairer world for people with learning disabilities where they are listened to and have the same rights, choice and control over their lives as everyone else. We do this through providing a range of advocacy services and community projects that support people to: • • • • •

express their views and find solutions to their problems. challenge discrimination and uphold their rights. access the support and services they need. influence positive change in the services they use. positively contribute to their community. Our activities include:

• issue-based advocacy—1–1 case work on a wide range of issues. • citizen advocacy—longer-term support from volunteer advocates. • weekly drop-in sessions—offering peer support, information, signposting and immediate 1–1 advocacy. • Learning Disability Voices Network—network of self-advocacy groups and events.

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• user-led training, awareness raising and campaigning. • engagement and consultation activities. Building Bridges  Building Bridges Training is an independent social enterprise which makes a difference to the lives of people with a learning disability through co-delivering training and research. It started in 2008, and is based in Sandwell, West Midlands. Building Bridges Training enables people with a learning disability to be included and have full and valued roles in their local community. We do this through the following activities:

1. Inclusive research with people with a learning disability to understand the issues that affect the lives of people with a learning disability, such as living independently. 2. Training the staff who work with people with a learning disability such as giving good support to parents with a learning disability. 3. Training the staff from mainstream organisations so they can better understand and support people with a learning disability who use their services. 4. Training university students on social work, social care, nursing and health visiting and psychology courses. 5. Delivering courses for people with a learning disability on topics such as financial capability ‘Managing my Money’ and well-being ‘Look After Yourself ’. 6. Producing easy read information for people with a learning disability

and good practice resources for staff.

Contact details: Dr Liz Tilly—[email protected] www.building-­bridges-­training.org Community Interest Company 6916509 Making a difference to people’s lives through delivering training. Cardiff People First  Cardiff People First is run by people with a learning disability. All our front-­line staff and our volunteers have a learning disability. We campaign for rights and equal access to our communities and services. We run training courses to help others understand how and why to make us welcome. We have won awards for our work as an organisation, and many of our individual staff have won personal awards for their work with us.

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CASBA  CASBA is a small organisation making a big difference to people with learning disabilities in South Birmingham. We are a provider of advocacy services. This means we help adults with learning disabilities to speak up for themselves or if they are unable to do so we speak on their behalf so their voices are heard and their rights recognised. Set up in 1988, we have supported more than 3000 people, empowering them to secure their rights, overcome exclusion, be better connected, confidently negotiate challenges and thrive. We are the only specialist advocacy organisation for people with learning disabilities locally, fulfilling a vital need. The services we offer are as follows: • 121 non-statutory advocacy, free, holistic and person-centred. We empower people to secure their rights and speak up for themselves. Our trained advocates help anyone with learning disabilities in crisis no matter what it is. • Support for new parents with a learning disability to get the right support during pregnancy. • Self-advocacy groups for younger and older adults. Support to come together to learn skills and increase confidence to be the voice of people with learning disabilities in their local community. • Training the staff from mainstream organisations so they can better understand and support people with a learning disability who use their services. Clare Inclusive Research  Clare Inclusive Research Group is a subsidiary of the Brothers of Charity Services, County Clare, Ireland. Founded in 2008 through an initiative of then CEO, Mary Kealy through the appointment of an Advocacy and Inclusive Research Officer, the first in the republic, CIRG became members of the Inclusive Research Network, a national group started up through a collaboration with Trinity College, Dublin and FedVol, the umbrella organisation advising Learning Disability service providers. Ger Minogue is the group’s founding member and along with the other five active members whose stories are recorded in this book they have campaigned to successfully repeal discriminatory laws regarding decision-making and intimate relationships and in 2022 launched their Manifesto for Inclusive Research at the IASSIDD seminar on Inclusive Research. (PDF) Manifesto of Inclusive Research (researchgate.net) Contact details: Inclusive Research Officer [email protected]

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DanceSyndrome DanceSyndrome is a multi-award winning charity that enables everyone to dance! All our dance activity is led and informed by people with learning disabilities. DanceSyndrome activities give people confidence, respect, value and self-belief through our philosophy of ‘anything is possible even though you have a learning disability’. Set up in 2009, Jen Blackwell, with the support of her family, co-founded DanceSyndrome which became a registered charity in 2013. Jen was born with Down’s syndrome but her dream was to be a community dance leader providing accessible dance for everyone. Her challenge to find appropriate inclusive dance opportunities, dance leadership and performance training led to Jen and her Mum setting up their own organisation. DanceSyndrome operates a unique co-delivery model providing dance training in the community and online—both in the form of inclusive technique classes and open creative Everybody Dance sessions. DanceSyndrome offers a broad programme of innovative dance, leadership and inclusion workshops and training to address health inequalities, social inclusion, prevention and transformation. DanceSyndrome also developed and delivers the ‘Dance by Example’ training course accredited by Sports Leaders UK as well as performing spectacular routines all over the UK and delivering inspirational and motivational talks and presentations. www.dancesyndrome.co.uk | Follow us on Twitter, Facebook, Instagram, LinkedIn and YouTube Julie our Managing Director is [email protected] Jen our Co-founder is [email protected] People First Dorset  Led and run by people with learning disabilities, People First Dorset is a charity whose vision is that we, adults with learning disabilities, are treated equally, listened to and included in community life. Through our projects we are empowered to lead independent and fulfilling lives, by making and sustaining peer group friendships, and then addressing the inequalities we experience. We do this first through our Friendship Club, where we gain confidence and reduce our social isolation, meeting in community settings. Next, our Speaking Up project enables us to understand our rights and develop our communication skills, so we can become stronger self-advocates. Finally, in our Action Groups,

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we take our concerns to those who make decisions which have an impact on our lives, such as health and housing providers or local government. RIX Research & Media (RIX), University of East London (UEL) RIX Research and Media (RIX) is a research and development centre based at the University of East London (UEL) (rixresearchandmedia.org). The Centre was established by Professor Andy Minnion in 2004 and was named in honour of Lord Brian Rix. Its purpose is to improve the lives of people with learning disabilities through the use of new media technologies. We lead research and learning partnerships and co-develop software and training to enable people with learning disabilities to realise the full potential benefits that digital and new media technologies can bring to their lives to achieve inclusion, greater independence and improved quality of life. Through the use, adoption and integration of multi-media advocacy tools and person-­ centred ways of working, we can achieve inclusion of disabled people in our communities. Our research work explores the new opportunities presented by a rapidly evolving digital world to improve people’s lives. We use a co-development approach, using action research to work in partnership with individuals and organisations. We work with people with learning disabilities, their support teams and the organisations involved in their education, health and care. Together, we have developed accessible software to help people of all abilities to enjoy the benefits that digital communication tools can bring. Our work has broadened to include other groups such as people with mental health concerns and dementia. Our special interest is in improving self-advocacy and communication with today’s digital media tools. Our multi-media advocacy approach explores how the making and sharing of media content can help individuals to organise their thoughts, articulate their views and influence change. We explore how multimedia advocacy can help people gain choice and control in their individual lives and build their independence as well as take an active part in reshaping their communities to be more inclusive. Rix Research & Media is part of the University of East London (UEL). UEL has a strong commitment to making a positive social impact through research and scholarly activity at a local, national and global level. RIX is one of Universities’ flagship Research Centres and a champion of the UEL Civic Engagement mission to challenge social injustices and ‘make a difference’.

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Contact details: Gosia Kwiatkowska [email protected] https://rixresearchandmedia.org/ Transforming lives: developing new technologies to achieve change for people with learning difficulties and their families. SpeakEasy N.O.W.  We are a self-advocacy charity run by people with learning disabilities who have lived experience, based in Worcestershire. We run SpeakUp groups and projects which help to ensure that health, social care and local government services meet the needs of people with learning disabilities. Sunderland People First  We are a self-advocacy organisation based in the North East of England. We support people with a learning disability and autistic people lead full lives as citizens and all our work is aimed at supporting our community. We achieve this through consultation, coproduction, promoting national and local campaigns and giving people a collective voice. We build relationships and work with other self-­advocacy groups and allies across the country and internationally to support inclusion: We are #StrongerTogether #SelfAdvocacyWorks We do this by: 1. Making information accessible—people with a learning disability making information clear and easy to understand. Our easy read team have experience of working with a range of partners to develop accessible information and providing training. 2. Training—all our training courses are designed and delivered by experts by experience. 3. Quality checking—quality checks provide an expert by experience view of how your service, business or organisation meets the needs of people with a learning disability, autistic people and families. 4. Consultancy—supporting people and families to give thoughts about plans and information is central to everything we do. 5. Supporting health and well-being in lots of different ways. 6. Campaigning for change.

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Contact details: Lisa Clark [email protected] Sunderland People First Co-operative Community Interest Company: Company number 08752946 Sunderland People First—a Voice for Change Surviving Through Story  Surviving Through Story is a collective of self-advocates, researchers, teachers, families and supporters who came together during the pandemic (2020–2023) to collect and share the experiences of people with learning disabilities and autism. https://www.survivingthroughstory.com/about Nicola Grove is an independent researcher and Director of the Storysharing® Training Programme. The Working for Justice Group  The Working for Justice Group is an awardwinning group of people with learning disabilities and/or autism who have been through the Criminal Justice System. Meeting for the first time in 2006, they have come together regularly as a reference group to support sector change, always with the aim of making the system more equal and fairer for people in trouble. They generously tell of their experiences and struggles so that professionals understand the needs of neurodivergent people, the value of good and early support and the importance of making reasonable adjustments. Most members of the group are also trainers and speakers, and have spoken truth to power on many occasions. Contact details: Tracy Hammond: [email protected]

List of Figures

Fig. 2.1 Fig. 2.2

Emily Walker’s painting Members of the Clare Inclusive Research Group Team: Brian Hogan, Orla McMahon, Ger Minogue, front Pauline Skehan Fig. 3.1 Pictured from left to right: Peter Pamphlett, Jen Blackwell, Lewis Barber, John Hendrickson and Michael Cooke Fig. 3.2 Emma with her dance teacher Fig. 4.1 ‘Just a moment’ cards designed by Building Bridges Training Fig. 4.2 Orla McMahon Fig. 5.1 Rachel Barrett (Garage Art Group, Worcestershire) Fig. 5.2 Stuart Bullock (Garage Art Group, Worcestershire) Fig. 5.3 Original artwork by Chrissie (Building Bridges) Fig. 7.1 Illustration by Sal Lapsley The car is travelling along a road on its journey towards the flag which represents the LGBTQ+ community Fig. 8.1 Dean Beach and Belinda Powell wearing their “Please Offer Me a Seat” badges Fig. 8.2 Travel buddy scheme—Andy and Charlene Fig. 10.1 Dawn Gullis showing Mark Drakeford (First Minister of Wales) our Ely Hospital exhibition Fig. 10.2 The Founders of BAROD in 2013 Fig. 10.3 George Burt—working in the pub

17 37 57 68 83 87 105 110 118 151 173 180 217 225 239

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Fig. 11.1 Example of a fixed penalty notice 251 Fig. 12.1 Rohan (Being Heard in Government Group member) speaking at a general election hustings in Brighton in 2019 266 Fig. 12.2 Katie and Ian (Being Heard in Government Group members) campaigning about local cuts to Learning Disability services268

List of Photos

Photo 9.1 Paul Christian—researching the life of John La Rose, my inspirational leader. Here I am standing in front of a statue commemorating his work Photo 9.2 Tessa singing with friends in our People First Dorset Choir

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1 Introduction Liz Tilly and Jan Walmsley

On the basis that all people are born equal, people with a learning disability are equal citizens yet many still struggle to enjoy their full human rights. This is due to the social barriers and discrimination they experience by both society in general and the systems by which social care and support is delivered. Awareness of this injustice led the United Nations to produce a specific convention in 2006 to uphold the rights of people with disabilities: the United Nations Convention on the Rights of Persons with Disabilities, known as the UNCRPD. It has been adopted in 186 countries. It has given impetus to legislation and regulations which promote the rights of disabled people around the world and can be used to hold governments to account (Cojocariu, 2020; Encalada, 2020; Harpur & Bales, 2010).

L. Tilly (*) Building Bridges, Halesowen, UK e-mail: [email protected] J. Walmsley (*) Jan Walmsley Associates, Aylesbury, UK © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2023 L. Tilly, J. Walmsley (eds.), Rights in Practice for People with a Learning Disability, https://doi.org/10.1007/978-981-99-5563-3_1

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This book  featuring stories of citizenship, focuses on the UK and Ireland, where the Convention is signed and ratified, and yet is failing at times to uphold people’s rights. A report from the United Nations in 2017 noted that the UK was failing in its obligations as a signatory to the Convention. It found ‘grave and systematic violations of disabled people’s human rights’ (OHCHR 2017a quoted in Lisney, 2020 p.190). And yet a significant number of learning disability service provider organisations and professionals in the UK are not even aware of the existence of the Convention. This is different to the situation in many countries where it has made a difference. This includes Ireland, where a number of contributions to the book originate. There the Convention has been given credit for the Assisted Decision Making (Capacity) Act 2015 (Flynn, 2020), which protects people’s rights to make choices. The need to draw attention to the Convention for audiences in the UK and Ireland was the motivation for developing the book, and so to remind people who have any roles or connections with people with a learning disability, that have responsibilities to uphold their rights. Rights, citizenship, and inclusion go hand in hand (Williams, 2013). The Convention can be a way to frame campaigns and actions, to make a powerful case for change (Soldatic & Johnson, 2020 p. 332). And there are some signs that this is happening in England with charity Learning Disability England using the Convention to frame its campaign for Good Lives (Learning Disability England, 2022). Our ambition as editors is to promote a human rights approach as the foundation for all services and support for people with a learning disability. The stories in this book are inspirational. They show how people overcome the many and various barriers they experience to do both ordinary and exceptional things, and live good lives (Johnson & Walmsley, 2010). The stories from and about people who enjoy their rights and their citizenship can change the hearts and minds of the readers. Rather than seeing people with a learning disability as dependent ‘service users’ or ‘clients’, the stories in this book show how people with a learning disability can have their rights upheld, with an outcome of citizenship, independence, and achievement, in short, ‘a good life’.

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Sometimes that support comes from enlightened services. More often, it comes from family members fighting their corner. Or from advocacy groups or collaborative work with universities. Or from people in what one of our authors calls ‘the real world’, people who run pubs, who provide dance courses and qualifications, and see no reason why they should not include a person with a learning disability as customer, client, student, or employee. There are many more stories to be told about how people can achieve a good life. We are pleased to have made a start.

1.1 The Authors and Contributors This book has over 100 contributors. They include individuals, self-­ advocacy groups, advocates, family members, and academics. The contributors are from England, Wales, and Ireland. The stories should inspire the reader to think differently. Rather than seeing people with a learning disability as dependent ‘service users’, we invite people to think about the role they can play in enabling people with a learning disability to have their rights upheld, so they can play a part as citizens.

1.2 Who is this Book for? This is a book for everyone passionate about people with a learning disability living full and safe lives. We hope that the list will include people with a learning disability—although most will need help to access the content of the book. It will be useful for students following social care, social work and health, disability studies, and human rights and law courses who need to gain an understanding of human rights and disability rights in practice. All practitioners, professionals, service providers and commissioners, shared lives carers, self-advocacy groups, and people who want to promote good lives for everyone should read it.

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1.3 How Did the Book Come About? The editors sent a summary of the book and an invitation to as many people as we could find to send us a 300-word summary of what they would like to write about. The editors then decided where this contribution would fit. We asked people to find an academic or professional to support them and to write some background information about the topic, why it matters, and what UN Convention article it relates to. If they could not find a suitable person the editors undertook that role. The editors provided a template to help people structure what they wanted to write. Very few people used it though. Twenty people came to a vibrant writing day in Birmingham in August 2022. The editors tried to keep people motivated and informed with regular on-line meetings. These were great fun. We supported authors with their contributions in different ways: through face-to-face meetings, through Zoom meetings, editing, and phone interviews. More of how we wrote the book is outlined in Sect. 1.5. Some topics were more popular than others. Lots of people wrote about education, and lots wrote about work and jobs, how they have got them, why they matter. Far fewer wrote about relationships, parenting, health, safety, and the criminal justice system. We had to be proactive to find more stories in these areas. Throughout the process, we have been surprised and humbled by the enthusiasm people showed for being in a book, and that everyone kept to the timetable we had set.

1.4 Chapter Content There are some Articles not covered in the book. Article 11 focuses on protection in situations of conflict and humanitarian emergencies, thankfully not part of the lived experience of our authors. We have also had a focus on adults rather than children, with one exception, Emily (Chap. 2). Chapters 2–12 follow this template:

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• Introduction to the topic, which UN Article(s) it relates to, and some information about the background. This is written by an academic or professional. • Outline of some challenges people with a learning disability can experience in living as citizens with rights like other people. For example getting accessible information, having choices about where home is and who it is shared with, being able to make choices about being a parent or having intimate relationships, and feeling safe. • Stories by people with a learning disability about what makes it possible for them to enjoy their rights. • Shorter stories or vignettes about how an individual, couple, or group have been enabled to enjoy their rights. • Accounts by advocates, academics, or family members about their role in making sure the person they support enjoys a good and flourishing life. • Top tips: suggestions and advice to people wanting to do similar things. • Further reading and resources.

1.5 Writing the Book This section explains how the book was put together and how the stories were captured and written whilst still giving the authors with a learning disability their authentic voice—something that was of great concern to the editors. Many—possibly most—people with learning disabilities struggle with the written word. Hence the campaign for ‘easy read’ information. It seems counter-intuitive to ask people to contribute to a book to celebrate the achievement of rights, knowing they will be challenged to write a contribution without support. However, this approach has two big advantages: 1. A book has status; being a contributor to a book really matters to our authors. 2. A book lasts in a way that websites and videos do not. Websites vanish when people run out of money to maintain them; videos become obsolete when technology changes.

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Back in 1990 one of the first ever books to foreground the voices of people with learning disabilities across the UK was published: Know Me As I Am (Atkinson & Williams, 1990). Now almost a historic document, it retains a proud place in the learning disability movement to ensure that we hear the authentic voices of people who have too often been silenced in the public record. We as editors hope that this book stands the test of time as well as Know Me As I Am. Given the challenge of low literacy levels, the authors had to be quite imaginative in recording the stories. As editors we made two requests: 1. That stories were told by the authors themselves or if this wasn’t possible then people’s voices were included as direct quotations. 2. That authorial teams record how they worked to produce their chapter. This builds on the work done in inclusive research (a research approach where academic researchers and people with a learning disability work collaboratively and with equal status on a research project), since the late twentieth century. In particular, debates about whose voice is heard in the final publication, and who is named as author: The experiences, views and opinions of co-researchers are often either absent or very selectively reported.

Wrote Iva Strnadova and Jan Walmsley in an article published in 2017 (p. 1). As editors we were determined that this book does not make that mistake, that it places the voices of people with learning disabilities at centre stage. The authors and contributors of each chapter did this in different ways. In their chapter on ‘Equality and Recognition’ (Chap. 13), the inclusive research team at the Rix Centre, University of London, were one of several groups who used frequent meetings to record what they wanted to say: When we found out that our proposal for the book had been accepted, we were very excited. We met weekly, both in person and online. Gosia facili-

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tated the discussions as we talked about how we first got together, what happened before the pandemic, and what happened during the pandemic. We also shared our stories and experiences of employment, equality, accessibility, and inclusion. We talked about our feelings and our rights. These sessions were recorded and transcribed by Kanchan. Together we looked at the guide for writing the chapter and talked about what we wanted to include. Kanchan organised all the transcriptions and worked together with the co-researchers on the first draft. Gosia wrote the introduction and conclusion and researched the references. As a group we discussed the content and top tips. Gosia and Kanchan combined all the discussions together to produce this chapter.

Craig Hart (Chap. 12) took a different route. He enjoys recording videos on his phone. He sent his video to Jan (editor) who transcribed it, then asked him for his top tip in a phone call. Where authors were less confident about what was required, one of the editors arranged a visit to meet the group, prompt with questions and record the discussion. This was how we worked with Being Heard in Government (Chap. 12) and Cardiff People First (Chap. 10). The editor then sent a draft to the group for checking and approval. Should we include other voices? There was hesitation amongst some contributors about this. One person working in a support role wanted to include just the voices of those she supported, not her own voice. We argued that it is important to recognise that a good life does not happen by magic. There is someone in the background working hard to achieve it. Lynne James-Jenkinson asked that her role in Emma’s success as a dancer (Chap. 3) was included alongside Emma’s story, not because she wanted the glory but because people need to know what is involved in fighting for someone’s right to live her dream. Emma’s voice is here too. Isabelle Garnett was interviewed by Jan Walmsley about her son’s experience of incarceration (Chap. 4), a story he was not able to tell in anything like the level of detail. We include his voice by adapting an article he had published in Community Living about his quest to visit every football ground in England. We needed to be flexible to the needs of and preferences of our authors. The stories from Building Bridges about self-determination (Chap. 3)

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were recorded and later written up by Liz Tilly, who kept the Black Country dialect in places. There was a need sometimes to put events into a chronological order so that they made sense to the reader. Liz’s approach was to type up the story and then go back to the person and check they were happy with the account, that they fully understood it would be included in the book with their name, and to also fill in any gaps in information needed for the story to make sense. In addition, Building Bridges used their regular groups sessions to gain feedback about the stories. They asked questions of each other to elicit further information, asking the author ‘why’ and ‘how’, to gather a deeper and richer story. One person who has hearing loss later added to his story by sending long WhatsApp messages. Karen’s story in Chap. 7 was told to her daughter over several sessions, with new information gathered and organised to tell a more coherent story. It shows story-telling as an iterative approach to capture the details of people’s lived experience. Accuracy and ownership is very important. You will notice a wide range in the stories’ lengths. Some cover many decades such as Karen’s (Chap. 7) and Dance Syndrome (Chap. 3), while some are ‘short and sweet’ such as Nazia’s (Chap. 7). The length of a story was the prerogative of the storyteller. We think this adds variety and interest to the book. For many people telling a story to an ‘active listener’ was a positive life experience, especially for those who do not often get the opportunity to share their experiences and feelings with others. This resonates with the experience of being a co-researcher. It highlights that people with a learning disability are seldom given the opportunity to share their thoughts and feelings and be listened to (Tilly, 2020). Almost all the people featured in the book chose to use their name, showing pride in their lives and achievements. Story-telling and authorship was a positive and affirming experience. Only one author is using a pseudonym due to her concern that if other local people knew her story they would guess who the other people were in it. As editors we noted how many people have survived through a range of adversities, to give frank and honest accounts of their lived experiences. The chapter on self-determination (Chap. 3) was bursting at the seams. We sadly had to edit down many of the stories. We were also

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interested in those stories people were reluctant to tell, especially those relating to personal relationships. These we had to be proactive in seeking out. For example, Mathew’s experiences in a private hospital (Chap. 4). One question which arose was the extent to which people’s words are tidied up for publication. Here is an original quote from one chapter: Oh okay, so after the college I was, I was aged 18 years old and 19 years between, so what I was, when I finished college study, I look for different job now. So, I couldn’t get look, I didn’t look, I didn’t look for any got erm different right, different available, available job skill, or ability.

We asked that quotations like this were tidied up, partly for word length, but more importantly because this was verbatim, as he spoke, and normally we don’t write as we speak. We leave you to judge whether this was the right call. Some authors struggled to move away from a writing style suitable for funding bids and press releases, to other contributions, which for better or worse represent people’s distinctive opinions. It is a narrow path to tread, to avoid boring the reader with repetition and irrelevant digressions, without violating someone’s right to be heard. We know we have not always got the balance right. All we can say is that we did our best. Finally, last but most certainly not least, there are contributors whose opinions and experiences we cannot access directly due to the degree of impairment. Emily Walker’s story is told in Chap. 2, ‘Becoming an Active Citizen’. There is a detailed description of how the story was created in the contribution. Here is an excerpt: What follows is the record of a conversation between Emily’s parents, Andy and Victoria, her teacher Lucy and one of her carers, Theresa, who is also a teaching assistant at Emily’s school. We share some stories from Emily’s life that tell us important truths about how someone with profound learning disabilities can be an active citizen, and what the barriers are. We mostly use Emily’s name and “she” and “her” for the stories told by her parents and her teachers. This is because we do not want to put words in Emily’s mouth. We use “I” when Emily is telling us likes and dislikes because she indepen-

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dently indicated these in her communication book. We are using first names for all of us because that is how we talked to each other when we met. Emily was present and included in discussions about her likes, dislikes and holiday stories. She was quiet and focused, and she took part at times by indicating items in her book. She took a break after lunch.

Thanks to that team for making sure we ‘hear’ Emily’s voice so clearly. All our contributors worked extremely hard and with integrity to get this book together. It has been inspiring to be on the receiving end of such generosity, enthusiasm, and creativity. We hope we have done justice to their hopes and aspirations, and that having read it, you the reader agree that citizenship is indeed attainable for all. And that there are many ways to ensure that people’s voices are heard.

1.6 Our Future Plans for the Book Project We see the book as the beginning of this amazing project and not the end. There are many more stories to be told. The book is in simple language but it is not an ‘easy read’. After publication we plan to share these stories and make them more accessible to people with a learning disability to inspire them on their journey to more inclusive lives. This will be through creating ‘easy read’ versions and using video or audio recordings. In the words of David Towell we hope this book and the stories within will help towards the unfinished business of achieving An Ordinary Life in the 2020s (Towell, 2022).

References Atkinson, D., & Williams, F. (Eds.). (1990). Know Me as I Am: An anthology of prose poetry and art by people with learning difficulties. Hodder and Stoughton. Cojocariu, I.  B. (2020). Advocating for independent living in the European Union: Where there is money there is a way. In K. Soldatic & K. Johnson (Eds.), Global perspectives on disability activism and advocacy; our way (pp. 263–280). Routledge.

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Encalada, A. V. (2020). Transforming disability law in Peru. In K. Soldatic & K. Johnson (Eds.), Global perspectives on disability activism and advocacy; our way (pp. 232–244). Routledge. Flynn, E. (2020). The long road to ratification: Ireland and the CRPD.  In E.  J. Kakoullis & K.  Johnson (Eds.), Recognising human rights in different cultural contexts: The United Nations convention on the rights of persons with disabilities (CRPD). Palgrave Macmillan. Harpur, P., & Bales, R. (2010). The positive impact of the convention on the rights of persons with disabilities: A case study on the South Pacific and lessons from the US experience. Northern Kentucky Law Review, 37(4), 363–388. Johnson, K., & Walmsley, J. (2010). Towards a good life for people with intellectual disabilities. Policy Press. Learning Disability England. (2022). Good lives: Building change together. Accessed May 3, 2023, from https://www.learningdisabilityengland.org.uk/ what-­members-­are-­saying-­and-­doing/good-­lives-­building-­change-­together/ Lisney, E. (2020). The onset of austerity in the United Kingdom and start of disability activism. In K. Soldatic & K. Johnson (Eds.), Global perspectives on disability activism and advocacy (pp. 179–192). Routledge. Soldatic, K., & Johnson, K. (2020). Conclusion. In K. Soldatis & K. Johnson (Eds.), Global perspectives on disability activism and advocacy; our way (pp. 328–344). Routledge. Strnadová, I., & Walmsley, J. (2017). Peer-reviewed articles on inclusive research: Do co-researchers with intellectual disabilities have a voice? Journal of Applied Research in Intellectual Disabilities, 31(1), 132–141. https://doi. org/10.1111/jar.12378 Tilly, L. (2020). Exploring ethical issues arising from ten years of inclusive research with people with a learning disability. Sentio; South East Network for Social Sciences, 2, 26–33. Towell, D. (2022). Towards an ordinary life: Insights from a British story of social transformation, 1980–2001. British Journal of Learning Disabilities, 50(2), 199–207. Williams, V. (2013). Learning disability policy and practice. Palgrave Macmillan.

2 Education and Learning Kelley Johnson

We open this chapter with a poem by Lisa, an Irish self-advocate, asserting the value of learning. The chapter is edited by Kelley Johnson and has contributions from Emily Walker and her parents and teachers, supported by Nicola Grove, Nicola Maxwell and the Clare research group. In this chapter, the different sections include themes and ideas relevant to the provisions of Article 24.

Article 24—Right to education within the general education system, without discrimination. The Writer Lisa Acheson

K. Johnson (*) University of New South Wales Sydney, Sydney, NSW, Australia e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2023 L. Tilly, J. Walmsley (eds.), Rights in Practice for People with a Learning Disability, https://doi.org/10.1007/978-981-99-5563-3_2

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Writer said many things I disagreed it’s about accepting to learn it’s in our nature to learn without it we aren’t human at all just robots going from A to B I agree we can’t love anything without learning what it is to us we can’t have a friendly connection without learning the boundaries we can’t develop as a person without learning from our ups and downs in our lives.

Introduction It may come as a shock to some readers to know that only in 1970 did all children in the UK become entitled to an education. Before the Education Act of that year, some of those with a learning disability were deemed “ineducable” and attended a Junior Training Centre if a place was available. At that time, many people with a learning disability were separated from their families and communities at a young age spending their childhood and their adult lives in large institutions (Hamilton, 2019; Allen et al., 2005; Johnson, 1998). For those who did not get taken from their families, there was little provision until the 1950s when Occupation or Training Centres began to be set up for adults. While some institutions provided “special school” education within their walls, there was little focus on what young people might gain from this. However, it is clear from the accounts of those living in large institutions that although they may have had limited or no formal education there, they did learn: how to live and adapt to institutional life, how to undertake specific skilled work or tasks within the institutional setting and, sometimes, how to care for each other (Johnson, 2005; Walmsley, 2005). As large institutions began to close, special schools began to open. These were intended to provide “education” in ways that would support the learning of young people with learning disabilities while ensuring

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that their impairment would not affect the learning of other students in mainstream schools (Garbarino & Authier, 1987). As claims for human rights gained strength, the movement to inclusive education became stronger in many countries. At its most basic, inclusive education involves the integration of children or young people into mainstream classrooms where they share a common curriculum with other children and are provided with support. Article 24 of the UN  Convention on the Rights of Persons with Disabilities (UNCRPD) emphasises learning as a means of becoming an active citizen with rights and responsibilities. It also highlights the importance of others learning about the needs and strengths of people with disabilities. The right to learning is important throughout the UNCRPD (see, e.g., Article 7, children with disabilities; Article 19, participation and independence in the community; and Article 9, awareness raising). The articles of the UNCRPD depend on the rights to education and learning not only of persons with disabilities but also of other citizens. On the surface, the three sections of this chapter discuss different aspects of education and learning. However, across the three sections are important common themes. In Sect. 2.1, Emily, who has profound learning disabilities and high support needs, is engaged with her parents, teachers and support worker in a discussion of her learning in relation to becoming a citizen with rights and responsibilities. This discussion includes the role of society to support teachers and other citizens to support Emily’s learning, ensuring that her rights to be treated with dignity and respect are met and that she has the opportunities to exercise her rights and responsibilities as a citizen. Emily is 13 years old and is a pupil at a special school. This section demonstrates how learning in citizenship may happen within a school environment outside of the set curriculum for people with significant levels of impairment. Section 2.2 explores the experiences of a group of students attending university in the Republic of Ireland. The students reflect on the importance of attending university not only to learn from the curriculum of the courses they are undertaking but also for the learning they obtain through the status of being a university student, the opportunities it offers to gain new knowledge and skills and their increasing sense of independence. There is a unanimous view from the group that at university they felt

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“normal” and were treated as adults. The difficulties of becoming a student at university in Ireland are also noted. Again, the importance of learning in relation to citizenship and the need for academics and other staff at third-level institutions to be educated about the needs and rights of students with disabilities are stressed. Section 2.3 is the first of several life histories written by self-advocates with learning disabilities in Ireland, threaded throughout the book. Brian Hogan’s story of his life illustrates the importance of being heard and of being supported to develop particular interests and skills. It also shows the need for teachers and community members to be educated in working with people with disabilities. The hopes expressed in Emily’s story for a future as a citizen are again stressed by Brian who points to the importance of learning outside of formal education and the ways in which he has been able to use this learning to work for social change at local, national and international levels.

2.1 Becoming an Active Citizen Emily Walker, Victoria Walker (Mother of Emily) and Andy Walker (Father of Emily), with Lucy Cook (PMLD Teacher), Theresa Stephenson (Carer and Teaching Assistant) and introduced by Nicola Grove. This story explores how a young person with profound intellectual disabilities and high support needs can develop life as an active citizen. Emily is a 13 year old with lots to say and a strong personality. She attends a class for young people with similar disabilities in a special school. Being an active citizen means being accepted, developing her own resilience and tolerance and recognising how she helps others (Fig. 2.1). There are many barriers to being an active citizen: • The fear people have of getting things wrong, and their prejudice and poor attitudes. • Lack of funding. • Lack of physical access. • The lack of facilities like Changing Places toilets, and information about how to find and use them.

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Fig. 2.1  Emily Walker’s painting

We can only overcome these by getting involved and showing what we can do. As Emily gets more involved, we believe that her understanding of what it means to take part in society will grow. We need to understand citizenship as a way of: • including everyone; • recognising difference and vulnerability; • recognising how we depend on each other.

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Sharing personal experiences can be a way of developing participation as a citizen. Learning to be a citizen should start in schools. People with Profound and Multiple Disabilities People with profound and multiple learning disabilities (PMLDs) are individuals with profound learning disabilities who may also have sensory impairments, physical disability and a range of complicated healthcare needs, sometimes referred to as having complex needs. They usually communicate through sounds, movements and eye contact. Their opportunities vary according to how they are viewed and valued (Bhaumik et al., 2018). Even in societies that offer family support, education and care, they are often excluded from mainstream society and culture. The charity PAMIS1 makes this point: Their disabilities can present challenges for them and those providing care. However … ‘profound’ also means deep, intense, wise and requiring great insight or knowledge. Although many people with PMLD have significant disabilities, they are also teachers, facilitators and can make a great contribution to our lives.

Education and Schooling Most such children are educated in special schools. It was only in 1970 that this group of children had the legal right to go to school in the UK. Before that, many were cared for in institutions, as is still the case in many countries (Cologon, 2022). At first they were kept in their own classrooms and received “special care”. Later many special schools started to group pupils according to their ages, and some were educated in mainstream schools (Goodey, 2015). In the 1980s, a “National Curriculum” was introduced and it opened up many “subject” based lessons (literature, science, history, maths) to special schools. Many creative resources were developed to help this teaching. Things changed for many reasons:  https://pamis.org.uk

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• Special schools got larger and included more pupils who can take public exams. Schools are assessed on how much progress pupils make, and this means that it is more difficult for teachers to take the time to adapt lessons to children with different needs in the same class. • Better health care at birth means that there are more pupils with complex medical needs in schools—this is a good thing, but also means that they need to be in smaller classes with more time for their care and exercise programmes. • Some educational organisations think that children with PMLD need a very different curriculum and way of learning than other children with special educational needs and disabilities (Imray & Colley, 2017). • Many teachers come into special education from mainstream schools and have very little knowledge of PMLD—so if the classes are segregated they don’t know how to help these pupils engage. Emily’s teacher Lucy Cook recalled: Even on a teacher training course we were not taught what PMLD is. I was told I was teaching a class with PMLD and I went “great” and then googled it and I was like “what’s this?”.

At the time of writing, pupils so labelled can lead quite segregated lives even within their special schools. Colley and Tilbury (2022) provide an excellent overview from an international survey of participation by youngsters with PMLDs within school and in their communities. Citizenship Teaching Citizenship became part of the school curriculum in England and Wales in 2002. Young people can learn about democracy, human rights, laws and responsibilities, and national and international issues, such as climate change, race equality, global migration and conspiracy theories. A report highlighted that parents and pupils see citizenship education as important, but that teachers may find it challenging when the topics are controversial—for example protesting against racism or climate change (Garratt & Heather Piper, 2008).

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If you have a learning disability, people may think you can’t understand or take up the responsibilities of being a citizen. If you are a citizen you are supposed to behave “normally”—that is, to do what everyone else does and follow rules. The UNCRPD emphasises autonomy, choice, independence, equality and participation as its fundamental guiding principles for developing citizenship. But, as Taylor (2018) and Altermark (2017) argue, this can be a trap. Our democracy depends on debate with other people. If you do not use language (spoken, signed or written) and/or you are dependent on others to meet your needs, then you will continue to be excluded from citizenship and debate. Taylor says the barriers are to do with lack of opportunity and creative thinking, not cognitive impairments, and that schools can and should help young people to find out how to be an active citizen. If schools do not do this, they are contributing to exclusion and lack of power. School Councils One way of engaging pupils in democracy is the “School Council”, where class representatives meet with staff representatives to discuss issues that are felt to be important. In theory, the school council allows pupils to have a say in decisions that affect them, and this is often known as “Pupil Voice”. It can be understood as pupils having the opportunity to have a say in decisions that affect them.2 Most special schools have school councils. But there is not much information about how good these councils are at including pupils with PMLDs. Nicola Grove spent a year observing how pupils were involved in decision-­making (Grove & Chalmers, 2014). She found that it was hard for young people with profound disabilities to make their voices heard. The school worked to change this, and the result was an inclusive guide for school councils (see references and resources). In this project, one great way of making voices heard was through telling a story about an experience. There are many ways of doing this, and it can have a big impact. One pupil who could talk and sign worked with a pupil who  This is a rather idealised picture as pointed out by Garratt and Heather Piper (2008).

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used a simple communication aid, movement and facial expression, to show his peers how their noisy actions at lunchtime affected his digestion. They had not realised this until the story was told, and some changes in the organisation of lunchtimes were made. Personal stories told with support, directly by people with profound disabilities, have proved a powerful route to participation, for communicating experience and campaigning for change (Grove et al., 2022). In the section that follows, Emily and her family share their experiences. What Citizenship Means to Emily What follows is the record of a conversation between Emily’s parents, Andy and Victoria; her teacher, Lucy; and one of her carers, Theresa, who is also a teaching assistant at Emily’s school. We share some stories from Emily’s life that tell us important truths about how someone with profound learning disabilities can be an active citizen, and what the barriers are. We use Emily’s name and “she” and “her” for the stories told by her parents and her teachers. This is because we do not want to put words in Emily’s mouth. We use “I” when Emily is telling us likes and dislikes because she independently indicated these in her communication book. We use first names for all of us because that is how we talked to each other when we met. Emily was present and included in discussions about her likes, dislikes and holiday stories. She was quiet and focused, and she took part at times by indicating items in her book. She took a break after lunch. Emily communicates using: • Sounds which express her mood and her reactions. She sometimes says “hiyaa:a” to say hallo. • Looking at things that interest her and that she wants. For example, if you are having a drink she will look at you and that indicates she wants it. • Gestures such as shaking her head for “no”, reaching to indicate she has something to say, blowing kisses, clapping, high 5 and throwing. She uses many facial expressions, smiling, raising eyebrows, frowning, clenching her teeth.

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• She had been using a PODD book3 for a year. This had helped her communication and reduced her frustration. It is used to explain ­situations so she can understand what is happening. She can reach to her book and indicate yes or no to symbol selection, to tell people about things that happen and what she wants or likes. Emily understands much more than she is able to express. She uses her knowledge of situations and familiar routines to make sense of what is going on. For example, when getting dressed she will follow directions like “Put your arm through the sleeve”. Her mum said “If we get a bottle of Prosecco out she gets ready for the because she doesn’t like loud noises”. Her parents have always thought she could understand more than she appears to. Their view is to treat her like any other 13-year-old kid. Emily has definite likes and dislikes. Using her PODD book she told us: I like swimming in the pool. I like to watch my brother playing football. I like going for a run with Daddy. I like music, especially Harry Styles.

What Is Citizenship for Emily? In an Active Citizens project, self-advocates described citizenship as: A citizen is someone who takes part in their community An active citizen is someone who uses their energy to make things happen And who helps other people. The bit that underpins it all is being part of society and not being marginalised because of the support you need.

We agreed that citizenship is a process that you learn to take part in. You learn by doing, and your understanding will gradually develop.

 https://novitatech.com.au/podd-communication-books

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Citizenship is related to growing up and maturing, through gaining different experiences. As people get older, the communities they access should expand, but all too often, they shrink. As Emily is growing physically, it is less easy to take her on camping trips or family excursions. She needs specialist equipment. Communities Emily is a member of several different communities: • Family and friends, such as the couple who go on holiday with them; or her sister’s friends, who sit and interact with her on the sofa. • School—her friends in class, and the wider school community. School friendships are strong, but it is difficult to socialise outside of school hours because of the distances and high support needs of the pupils. • Hobbies and groups: –– Horse riding, where once Victoria had modelled how to interact with Emily, the teenagers who help out were fine with it, and chat to her. –– The YMCA youth group and music clubs she attends. –– Her brother’s football club is actively welcoming—they are working to diversify and build community at a grassroots level. –– Visits to the local library. Emily travels widely with her family, going to Norway, Spain and Wales. In both Spain and Wales, people know her because they regularly visit the same places. These are all places where Emily is known and can feel comfortable. But to be an active citizen you may want to take a role in your neighbourhood. As a citizen you have rights and you have responsibilities. Rights and Responsibilities • Rights and acceptance

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We thought this meant the right to feel accepted in a particular place at a particular time—which has to be the starting point for citizenship. Doing what other 13-year-olds do, as much as possible. For Emily, and for her family and teachers, acceptance that people with disabilities have a right to be themselves in a public place as anyone else is often hard won, as the following stories convey: Victoria: Citizenship is about acceptance. So many people don’t understand and therefore she’s been upset and frustrated by people moving their children away. We caused an international incident on holiday—we were in a restaurant, and a French family moved their children away, it was so obvious what they were doing. All the Brits there were outraged! But I was in tears, her sister was in tears, her brother just held his magazine up, like “I’m not here”. On a previous flight, she was making a noise and this man in front of us turned round and said “can you shut that kid up …?”. I wish I’d thought to say, “[W]ell if I could find the missing chromosome then yes I could”. His daughter, though, she was obviously qualified and she gave him a right mouthful.

Nicola asked—who talks to Emily if she goes out locally? Victoria: We walked to Costa last weekend, an old lady struggling to walk rested on Emily’s buggy and she started a conversation with Emily—but she was lonely, and she had the time to talk. It very much depends. Mostly it’s the older generation, the younger ones are all on their phones, and they haven’t got the time—everything now depends on a quick response and Emily needs time to process what you say to her. Quite a few people do talk to you … some will get down on her level and talk to her but most people stand above her and talk to her and sometimes they use baby talk. But not that many people speak to her. For example we went out for a meal and the waitress didn’t acknowledge her, but Emily vocalised and then she said oh hallo, you all right? I do think the biggest barrier to being an active citizen is that people have a fear factor because they are not sure how to communicate—they don’t want to upset you or do something wrong and it’s outside their comfort zone, so they ignore her because it’s easier ….

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On a long haul flight, we got the kids to hand out leaflets to say “my name’s Emily I’ve got challenges, I may be loud sometimes but I’m not in any pain. I am going to have an adventurous holiday with my family.” And a man behind us leaned over and said “I don’t care how much noise you make I just want you to have a good holiday!” I feel that shifts the responsibility to them—it doesn’t feel my problem any more.

Responsibilities It’s interesting to consider what the term means from Emily’s point of view. Her family and teachers say she is now more aware of those around her and her tolerance levels are increasing. Lucy talked about how she is now able to wait and take turns in class. Theresa gave an example. Explaining situations to Emily has helped her anticipate and understand what is happening. One of Emily’s particular hates is barking dogs. We were in a cafe the other day and this dog started barking, so I was saying to her, its ok, the dog will bark, that’s what dogs do, but you are ok, it will stop after a bit. She needs to get used to it, but other people’s reactions were “why aren’t you taking her out?” They were expecting me to do that. The man was also trying to tell his dog to shut up. She loves being out and about and there will be dogs around. She is learning to cope—we were out in an open environment and there was some loud barking but she knew we were going to keep on walking. But she needs to develop resilience because she will miss out on loads of things if every time she gets agitated, she is removed.

Andy said that just contributes to learned helplessness. This is a phrase which means that people may learn not to do things for themselves or to speak out, if everyone always treats them as though they are incapable and have nothing to say. What Emily is learning is that dogs and dog owners have the same rights to public space that she has. This helps her to be strong and resilient in coping with her own fears. Emily is learning to use a sound button with a voice message to take the initiative and say hallo to people. This is to help her to be more visible as she encounters people.

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Helping Others Another way of thinking about responsibilities is how Emily helps others. This is partly a matter of taking on tasks—for example, when baking, she can crack the eggs and help stir the mixture; and in school she can run errands or do small jobs. Lucy described one learner who was very reluctant to leave the classroom but Emily was happy to have her lean on her wheelchair and go with her. In that way she was giving confidence to that other person. Emily is developing her caring side. Victoria said: She has started recently—if I am on the sofa if she wants to show affection she will lean into me. That’s developed over the last few years, she can make a conscious decision now to blow a kiss or not, she didn’t have a way of showing affection before. Lucy said: If I am stressed and I say I’m very sad, she will just sit quietly with me, and just being with her and seeing her smile makes me feel better. Andy said: When I take her running, for the next couple of hours she will be thankful and grateful. She shows it by being quiet and more affectionate. She can point to thank you in her PODD book. These are examples of the contributions that a person with PMLD can make to the lives of others, just as PAMIS suggests. School and Citizenship Education We agreed it is important for mainstream children to have knowledge of pupils with special needs. Victoria: There’s a lot more work that schools could do. They are tackling transgender and gay issues and the kids don’t bat an eyelid, which is so different to how it was when we were kids, but they aren’t tackling disability.

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In Emily’s school, there are special PMLD classes and they don’t get to meet many of the other pupils who are learning in different ways to them. There can be an attitude that a person who is nonverbal cannot communicate without a communication aid, whereas Emily has many ways of making herself heard. Lucy and other teachers are changing this, through taking pupils into other classes to share their stories. They are determined that Emily and her friends should be seen as active members of the school community. My Library Story Another campaign in the school is to set up links in the community so that families will know which places are really accepting. Theresa said: Our massive challenge is community, when we take them out. I was with a pupil in Birmingham city centre recently and they were grunting and mouthing their fist, and someone said “Oh, it’s such a shame you take her out in public!”. We thought Emily’s leaflets on the plane were a brilliant idea and we are going to try something similar.

Lucy takes the class on regular visits to the local library. They do not have any multi-sensory books of the kind that Emily enjoys, so on one occasion she told her own story about her holiday in Norway, to the staff, using objects and her PODD book. Emily and Lucy told this story together in an online seminar in July 2022.4 Emily baked cakes and painted Christmas cards to sell, raising enough money to buy two multi-sensory books for the library. Emily as a Citizen in the Future Andy and Victoria said: It would be Emily living as independently as possible and actively taking part in the community around her. As fully as possible to help other peo A Voice Through Story for Young People with PMLDs. https://www.creativeeducation.co.uk

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ple … be a positive force in society. She needs advocates to be able to do this—people who will work with her and help her to recognise that what she does is valuable and important. The Commonwealth Games, which were held in Birmingham in 2022, offered a very positive model for how genuine inclusion for people with disabilities can be achieved.

Conclusion This section has shown that it is not only possible, but essential, to develop experience of citizenship with individuals who have profound disabilities and high support needs. As Taylor (2020:65) tells us: Imagining citizenship otherwise involves asking: What does civic participation look like for individuals with significant intellectual and other disabilities? What does civic agency look like? Imaginative answers to these questions are urgent. Without such imaginative answers a clear reinforcement of the discourse of vulnerability and incompetence prevails, buttressed by highly racialized and gendered historical narratives of civic unfitness. Top Tips • Believe that people with profound disabilities can contribute actively to our society. • Look for opportunities that will mean something to them, in the public domain. • Celebrate their achievements and tell the stories with (not for!) them.

Practical Resources The guide to involving students with high support needs in school council is here: https://stor ysharing.org.uk/wp-­c ontent/uploads/2022/06/ INVOLVING-­S TUDENTS-­W ITH-­C OMPLEX-­N EEDS-­I N-­ SCHOOL-­COUNCIL.pdf There are case studies and videos available on the Storysharing® website https://storysharing.org.uk

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2.2 “It’s Only Right”: Recognising and Including Adults with Intellectual Disability in Higher Education in the Republic of Ireland The Irish Context Nicola Maxwell In the Republic of Ireland, people with learning disabilities5 do not have many choices in life at age 18. The “choice”, as the authors of this chapter put it, is to go to Day Services or stay at home. This means that young people who have been in school move from being in education settings to services that are run by the non-profit voluntary sector. Policy for post-secondary education in Ireland still “systematically” excludes people with learning disabilities (Maxwell & Leane, 2021: 10). Education is important to access work (Watson et  al., 2017), but, in Ireland, people with learning disabilities are not given the supports to be in post-secondary education (O’Donovan, 2021:17). It is hoped this will change with the announcement in June 2022 that people with learning disability and autism will be included in a New Access Plan for third-level education (DFHERIS, 2022). But there are a lot of gaps. There is no right to personal assistance in Ireland and there is not much progress on personalised budgets (Nic Aogáin et al., 2019). Some people with learning disabilities have had the chance to attend higher education in Ireland. A number of universities and institutes of technology have been providing campus-based programmes for students with learning disabilities for several years. These programmes though are not secure. Students have to pay fees and cannot access supports available to the general student population.

 The term “intellectual disability” is usually used in the Republic of Ireland.

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In the following section, five students who are graduates of the Certificate in Contemporary Living (CCL) in University College Cork (UCC) and are enrolled on a new programme called the Certificate in Disability Inclusive Practice (CDIP) tell their story of what it was like to be a student in third level, why it was important and what needs to change so that students with learning disabilities are “recognised as learners of equal value to their peers and accorded the same rights to educational funding and support” (Maxwell & Leane, 2021:17). The CCL was a 2-year part-time course for students with learning disabilities (2009–2020). The CDIP is a one-year programme for graduates of the CCL and equivalent programmes. The CDIP is part of the id+ Project funded by the Higher Education Authority. Introducing Alan, Brian, William, Ciara, Kayleigh We are all individuals and we’re proud of it. This chapter is about the rights of people with intellectual disabilities to be university students. We have the right to be equal as people and students and to be recognised as people who can be university students and live our own lives. From now on, instead of saying intellectual disabilities, we will be saying learning disabilities. We are going to talk about our storyline of our experiences as people with learning disabilities who were students on the CCL at UCC. How We Wrote this Chapter We talked about what we want to say in this chapter, and we were the leaders in the discussion. We talked about what was on our minds about being UCC students, we talked about what we did, how we found our experiences of the CCL and what we think were the blockages to us being fully included and recognised as students. These are all our ideas and words. When individuals wanted to make particular points or we wanted to show our different experiences, we put those words in italics to make the point stronger. Becoming a University Student We felt very good being college students and it was a big change in life, and it was one we all wanted. Our reasons for going to college are the

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same as other people’s reasons because it’s important to go to college, to learn new things, meet new friends. For a lot of us, our families and friends came to college. Some of us have sisters or brothers who are UCC graduates. This meant that we knew some people on campus when we came to college. All of my sisters are UCC graduates. I met a lot of people on campus for coffee, chats. I would have been in a [ID day] service if not in UCC and had no opportunity to bump into people you know. … It was funny to see that some people were so shocked to see me on campus. Maybe they under-estimated me a little bit because I have a disability and am non-verbal. There’s five girls [in my family], all are graduates so it shouldn’t have been a shock and I enjoyed educating people. People would under-estimate people’s determination to overcome physical struggles though they knew me as a person who was determined. (Kayleigh)

Being under-estimated is a big thing, people don’t understand how we work. Having a learning disability, you sometimes get treated differently, you get in the habit of playing a part, the way people treat you and you can act accordingly. You go along with things instead of challenging them. They [other people] underestimated me because they thought I would be too hyper/giddy. … But I could be myself as a student and a person instead of playing the part of a person with ID. (Alan)

Coming to college changes that. When you stepped inside the gates, you felt more normal than having special needs. You feel proud. You’re doing your course. It’s challenging, you go to classes, think about what you say and do. There is a lot of work but it’s also fun. We were doing PowerPoint, timetables, bus trains, clocks, computers. I got more confident when I went to college, and I was very proud making speeches. I was proud of being a student. I was treated well and supported. (Brian)

Coming to college changes how you feel about yourself and what you can do.

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I got used to being here. When I got used to it, it was fine. Because you felt comfortable, you were in a class, and you got used to the teachers. (Ciara)

We were treated like adults and students. You were treated as an adult because you’re asked questions and your opinion matters. Because you felt proud coming in the entrance of UCC. This was different to how we were treated before. Some of us felt we were treated differently before, treated like a child. The big difference: in UCC you were asked, and you felt your answers were respected. In the services, from being in the service so young, you stayed that age for everybody. We weren’t grown up at all in our services; you’re not growing up in anybody’s eyes. When you came to UCC, you came as a grown-up and it was the first time being in an environment where you were treated like an adult. It was more relaxed in college because no-one was telling you what to do and all this. That’s different from services. It’s more honourable to be here than being in a service. Feel like more relaxed, calm. I introduced a friend to UCC because I thought she would be very interested. Because she was getting quite fed up of the [ID disability] service and she was looking for something else to do. It’s very important for people to come to college because it builds up their confidence, makes them less vulnerable. It makes people fight for their own rights and entitlements for their own future. … Because there’s no staff bossing them around. They can act more normal and get on with their own lives like they feel to. It gives you confidence and motivation to keep your life going. (Alan)

In other places like services there are strict boundaries. Coming to college means a vast difference in life, you can come and go when you want, like other people do. You’re in control of yourself, you get buses, go for a pint with your friends. For us, coming to college opened up the world. I applied because I always wanted to come to college. I wanted to get more independence, getting to know things more about the world. I got the house, went to college. You feel like you’re into your own community, getting more independent, making friends. Staying in your (day service), that wasn’t an option because I was getting fed up because there wasn’t much going on there for me. I started in June 2001 after 3rd year (of second-level education) and been there 21 years. After 13 years in the service, I’d had enough. (Alan)

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There were lots of chances to meet other students because there are loads of different students that are doing different subjects. You could meet people on breaks and on campus. Being a Citizen of UCC The student identity card (ID) was important. You got photo ID with your picture and name of the course. That was important. You felt included. It was important because you were a student and you felt proud because you had your name and picture, and it was important. It was very good cos you feel you were a UCC student. You’re meeting loads of new people and sign up for clubs and different societies. We graduated with other students. It’s important graduating with other students. Because you see everyone graduating. We don’t all agree with each other about some parts of our experience at college. Some of us think more needs to be done to make sure we are included more in college. We had a debate about whether we were really CCL or UCC students and we can compare our experiences of being a CCL student and a CDIP student now. On the CCL, there was at least 14 students, sometimes more. On the CDIP there are six students and the smaller group works better. The day is broken up and there is more variety. We are the leaders on this course. Kayleigh and Alan thought the CCL was more basic and this (CDIP) is a level up and on the CCL, some things were decided for people. We didn’t have much as a say in the last course. William disagrees with this: I felt like a UCC student—I personally don’t think, okay we’re doing a CCL course, we’re in UCC. I felt like it was in UCC. I am a UCC student. Because I am in UCC.  It’s on the UCC campus. We’re not in a separate campus as CCL. We are part of UCC. … My own opinion, on CCL you learn to do things on your own. I know people on the last course who said they got more out of the CCL like they were do things on their own, like getting things on their own.

Being able to talk like this and about the CCL shows we can have different opinions, that we know how to talk about our experiences. It shows too that we know there is a difference now. We have moved to thinking about ourselves as experts, as having the right to opinions and a voice. This is why we are here as graduates learning again and learning more.

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It’s Not All Plain Sailing: Blockages to Being a Citizen Student We talked too about the blockages, the things that made it hard for us at college. These blockages are things that need to be fixed so our rights to be included in life are respected. There were four main things that caused problems and they can be fixed. Grants and Financial Supports Getting into college was good but then you worried about fees. Getting the grant was a relief.6 It was hard because you were not considered a full-­ time student and only full-time students could get a grant. It’s bad because you have to pay and if you can’t get a grant you can’t go to college. It’s not fair. We should be part of the whole system like for SUSI grants, treated like other students. Access to Buildings For people who use wheelchairs (like Kayleigh and William) there are problems. If you’re in a wheelchair, you just know you won’t be with the class like when you are going in and out of buildings. When you’re using a wheelchair, you’re not always with your class because you have to find the ramps and other ways into buildings that are only for wheelchairs. Getting around on campus can be a problem too because it’s so busy. William said he was grateful for the ramps but, Kayleigh is clear, you shouldn’t have to be grateful for the ramps and the lifts: “Hello! Grateful!” You should be able to be part of everything and not be special and apart from your friends just because you are in a wheelchair. We did audits of UCC campus on the CCL, and we found lots of problems with buildings and lifts. Some things got changed like more ramps and automatic doors were put in but there are still things that don’t work for people who are in wheelchairs. Transport You’re in charge of life when you have transport. Transport is a big issue for a lot of people. There are not enough buses and buses in rural areas are  CCL students were not eligible to apply for grants. The “grant” referred to was philanthropic support administered by the programme on a needs basis. 6

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a particular problem. Getting up at 5.30am for a 10am start makes for a very long day. That takes away from independence. You can’t always get a wheelchair bus to get into college. You wait and then the driver says wait for the next bus. For wheelchair users who use taxis coming onto the campus in a taxi is like a “show and tell” (Kayleigh). You have to go to one place on campus, you have to wait to get out of the taxi, that’s not dignified. You can’t pull in privately and discreetly, it’s like you’re being announced. It’s more than about accessibility, things were created to be accessible, but they are not dignified. We need dignified inclusion. There’s not a lot of choice and there can be a lot of mis-communication with drivers when you are getting to college and getting home and decisions are being made for people because they’re considered more suitable for wheelchair users. This is not right, and it means the right to be included as a person in college becomes a problem. More needs to be done starting with talking to us: we are the experts because we are learning, and we are the people who are using the facilities. Personal Assistance Personal Assistance (PA) is really important. But the way the PA system is set up doesn’t always work and it doesn’t work really to help with learning. One of us, Kayleigh, does need PA support but you can be blocked from the learning experience when you have to rely on learning supports. You are given a PA and you spend nearly all your time with the same PA. You have no choice about who supports you and you can’t just assume that two people are going to get along and work together. The PA’s job mostly is to help with feeding and personal hygiene. This is not enough. Being a student is about learning and socialising. We have to change the law about PAs so you can live your life as a student and be included and feel like you’re included. We need more support and a variety of support staff. We need different PAs for different parts of college and life-like supports for learning and for socialising. We need a budget

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for PAs and the budget and PAs need to be for individual people’s need to be a student and live their lives.

Top Tips • Adults with learning disabilities in Ireland must have opportunities to make their own decisions about what to do with their lives including going to college. • Recognise the right of adults with learning disabilities to access and take part in third-level education. • Support adults  with learning disabilities to learn in third-level education by: –– Making transport available and accessible to people with disabilities. –– Giving people who need it the right to personal assistance to support learning.

–– Including adults with learning disabilities in policy so they can get access to grants and supports like other students do.

Conclusion We hope you have enjoyed reading about our experiences of going to college. We’re back in college studying again and this time we are working on understanding our rights more and we will be talking to other people like social workers, doctors, lecturers and all the people who will work with people with learning disabilities. The power is with us to make things better. But the government and colleges and people in general have to know too that we have rights. We need people who work on transport making plans, driving buses and everything else to know what needs to be done so we can use public transport and be independent. We need supports that are about more than personal hygiene but help to learn. We need to be seen as equal, treated as equal and have our rights to be included respected.

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2.3 “Tracking the Changes” (Fig. 2.2) Brian Hogan Background The life stories from Ireland were written by members of the Clare Inclusive Research Group (CIRG). Our group was set up in 2008 by the Brothers of Charity Clare region in Ireland. We come from different backgrounds: farming, seaside towns, one grew up in South Africa, another the son of a head teacher. We have written in academic journals and books and presented to conferences, nationally and internationally. We are founder members of the I.R.N. (Inclusive Research Network—Ireland) and in March 2022, the Inclusive Research Special Interest Research Group of I.A.S.S.I.D.D. used

Fig. 2.2  Members of the Clare Inclusive Research Group Team: Brian Hogan, Orla McMahon, Ger Minogue, front Pauline Skehan

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our “Manifesto for Inclusive Research” (CIRG, 2022a) as the framework for their first roundtable webinar with global inputs from academics and researchers with disability from 16 countries. The manifesto was first published with our article “Digging Deeper, Advocate Researchers’ Views on Advocacy and Inclusive Research” (CIRG, 2022b) which outlines much of our work to date. Writing these stories together was a good experience. It helped us get to know each other’s struggles and achievements and has built our confidence together. We strive to learn all our lives not just at school. Kind words and encouragement helped us follow our interests and our passions. Our stories are stories of citizenship. They appear throughout this book. Advocate and inclusive research leader, Brian Hogan, was chair of the Inclusive Research Network of Ireland. Through his learning story he recounts the trauma of a strict special boarding school far from home aged 6 and how through his own efforts he secured “effective individualised support” (UN CRPD Article 24, 2 e) to gain confidence and a sense of self-worth from his career as an inclusive researcher.

My name is Brian Hogan. In 2023 I’m chair of the Inclusive Research Network in Ireland. I’ve been doing research on and off now for 16 years. My family were farming people. I’m second eldest of four brothers, born in O’Callahan’s Mills, County Clare. The latest class I’m doing is drama workshops, with transition year students (15–18 yrs) and a group of senior citizens of Tulla, where I live now. And my latest research is on the advisory panel to an IT research project at Trinity College, Dublin. We’ve helped make an easy access app called “Digi-Academy” (https://www. digi-­academy.org) for people with learning disability to develop their online skills. My early schooling was in an institutionalised school. I started in the local school for about six months but then I was sent to what I call a “quack”: a psychiatrist I suppose, in Limerick. I was diagnosed dyslexic and a slow learner. Everything was back to front. Take your “b” it turned to a “d”. Same with the numbers, back to front.

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They suggested I go to the special school for people with disability. At the time the nearest school was in Galway 72 kms away. We were boarding, 14 of us in two dormitories. It was like a prison camp. If one person did anything out of the way everyone was punished. It might be only putting a shoe down the toilet. You were put sitting on an ice-cold stone floor. It could be two or three hours before someone would own up. And when they did sure they were beat at that time. I was six years of age, fifty years ago now. I was there from 6 to 18. I did have contact with my family, just at Christmas and then summer and Easter. There were some good teachers. Mrs K____ helped us get work experience just before we left school. She had her own son there so she arranged work experience for all of us. I was set working in a factory that made child’s cots, a sheltered workshop run by a private toy company. They employed 15 or 20 of us to do the work. I was 18. I got taught to read at the school but as for learning to write that went on for years after. I have made big progress now because things have changed. Adult education has been a big factor. The classes started with other people with disability and then moved to one to ones I arranged by myself, in Ennis and then more locally in Scarriff. These classes taught me what I was doing wrong. The one-to-one was brilliant. After I joined the Brothers of Charity, I got into the research work. I was interested in doing different research with different people. We were asked to review a paper about medication and people with a learning disability. We had experience in our group of people being made to take medication. Where staff did nearly force it on you if you said you had a bit of a problem. It’s something you might need help with but you don’t always need medication. You start telling people you’re anyway depressed and you can be straight onto medication. My opinion is medication is not the answer to everything. You’d be better off being given chance to solve a problem than be shoved on medication. I’m tired of preaching it because there’s no notice taken. I’ve also done a nice bit of research in schools for disability access. Doing this research has helped me in a big way because it’s made me

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realise that I can do research into anything I want to really. Plus it helps people understand about different issues and gives them the inspiration to try doing research for themselves. It also helps me to know I’ve been able to achieve something, something I’ve been trying to do for a long time. When you do research it helps you back up your ideas. It can be the voice of someone that speaks and nothing is done but it could also be the voice of someone who speaks and things do get done after all. I came up with the idea of “tracking the changes”. I told people at my presentation in Vienna. With “tracking the changes” you can get to see if anything you set as a target is achieved. Anything that came out of the research like an action might then be a challenge. You could follow up on it and say, “Where’s the changes made since we said this was a problem that needed fixing?” We’ve ended up doing a lot of training. Then afterwards we’ve asked where are the changes? We might come back later and see if they’re still not there. Myself and Joe McGrath were asked to mentor an intake of students at the University of Limerick (Salmon et al., 2017). We were doing access research for students in wheelchairs coming into the college in three main buildings: the Medical Science building, School of Music and Engineering. We went in and we talked to third year students of each group. After working with us the feedback from the students was they wanted more people with disabilities to come and talk about their experience because they thought that our stories were good ones. Like with the pandemic, at the Brothers of Charity we’re told to wear masks … yet no one else in the community is wearing them … not even in school. It’s because we’re funded by the health service, the old medical model. All the new stuff about breaking down barriers, welcoming people into jobs, making it accessible for everyone. They’re calling it the social model but funding it from the H.S.E., the health service. We need to track that change … it’s a big ask but at the end of the day we’re just normal people, who need a bit of extra help. Not sick people trapped in a health service. That’s why we need to be in everyday education. Help people better understand. If we get educated together in adult education they’ll understand our point of view.

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Like we should work on the word “disability”. It makes out people are just “not able” but there’s much more to us than that. It should be “extra support” needs. And do away with that word “disability”. There is more work to be done. We could do a training program help spread our ideas. With our latest IRN research we’re looking at support to make decisions. We’re going to be interviewing staff as well as people with disability. That should give us chances to do some training with staff. After we’ve finished the research we can work with staff and say our research told us “staff said this” “staff said that” and same with ourselves, “people told us this and that”. That helps it hit home better. Like our relationships research went flying out the door. We got the law changed but only because we really kept at it. We met with people who could change the law. We need to track our changes. Where do we carry the next challenge after that? We’ve got our research on the Internet at ResearchGate. I’m getting emails from all over the world saying, “We read your work. We like what you said.” Conclusion The editors had a rich response to calls for stories about education and learning. As editor reading these stories, I am struck by the concept of “valued social roles”, how important these are to people feeling they have the status of citizen. Although Emily’s school appears to be going out of its way to secure her citizenship, school education does not emerge strongly from these accounts. The students at University College Cork, and Brian, appear to have done more of their learning as adults and relish the opportunity. Recognition of adult status is important, as a student, or in Brian’s case as a researcher who can change the world for the better. It points to the value of learning opportunities for people throughout life, available to only a few fortunate people as Adult Education provision disappears with austerity.

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References Allen, T., Traustadottir, R., & Spina, L. (2005). Sixty years in the institution. In K. Johnson & R. Traustadottir (Eds.), Deinstitutionalization and people with intellectual disabilities. In and out of institutions (pp. 33–49). Jessica Kingsley Publishers. Altermark, N. (2017). Citizenship, inclusion and disability. Routledge. https:// doi.org/10.4324/9781315109947 Bhaumik, S., Gumber, R., Gangavati, S., & Gangadharan, S. (2018). Intellectual disabilities across cultures. In D. Bhugra & K. Bhui (Eds.), Textbook of cultural psychiatry (pp. 493–502). Cambridge University Press. CIRG. (2022a). Manifesto for inclusive research. https://doi.org/10.13140/ RG.2.2.17748.48007 CIRG. (2022b). Digging deeper, advocate researchers’ views on advocacy and inclusive research. https://doi.org/10.3390/socsci11110506 Colley, A., & Tilbury, J. (2022). Enhancing wellbeing and independence for young people with profound and multiple learning difficulties. Routledge. Collins, D., Featherstone, T., & Moran, P. (2021). Spending review 2021 social care for people with disabilities: Trends in expenditure and delivery of services. Irish Government Economic and Evaluation Service. Cologon, K. (2022). Is inclusive education really for everyone? Family stories of children and young people labelled with ‘severe and multiple’ or ‘profound’ ‘disabilities’. Research Papers in Education, 37(3), 395–417. https://doi.org/1 0.1080/02671522.2020.1849372 Department of Further and Higher Education, Research, Innovation and Science (DFHERIS). (2022). PATH 4 project roll-out for universal design, autistic students and students with an intellectual disability announced by Minister Harris [Press release]. Accessed January 6 2023, from https://www.gov.ie/en/press-­ release/50387-­path-­4-­project-­roll-­out-­for-­universal-­design-­autistic-­students-­ and-­students-­with-­an-­intellectual-­disability-­announced-­by-­minister-­harris/ Garbarino, J., & Authier, K. (1987). Chapter 4: The role of the educators. In J. Garbarino, P. Brookhouser, K. Authier, & assoc. (Eds.), Special children, special risks. The maltreatment of children with disabilities (pp. 69–81). Aldine de Gruyter. Garratt, D., & Heather Piper, H. (2008). Citizenship education in England and Wales: Theoretical critique and practical considerations. Teachers and Teaching, 14(5-6), 481–496. https://doi.org/10.1080/13540600802571353

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Goodey, C. F. (2015). Learning disability and inclusion phobia: past, present and future. Routledge. Grove, N., & Chalmers, S. (2014). Come on feel the noise! Or, who will stack the chairs?: A year in the life of a special school council. Special Children, 217, 18–19. https://storysharing.org.uk/wp-­content/uploads/2022/06/A-­year-­in-­ the-­life-­of-­a-­special-­school-­council.pdf Grove, N., Jenkinson, M., Kaluba, C., Mavour, K., Merrett, R., Odonkor, J., Ottridge, L., & Scott, G. (2022). Stories told together. Community Living, 35(4), 25. https://www.cl-initiatives.co.uk/stories-told-together/. Hamilton, C. (2019). Chapter 9: Institutionalisation in twentieth century New Zealand. In J. Walmsley & S. Jarrett (Eds.), Intellectual disability in the twentieth century. Transnational perspectives on people, policy and practice (pp. 143–164). Bristol Policy Press. Imray, P., & Colley, A. (2017). Inclusion is dead: Long live inclusion. Routledge. Johnson, K. (1998). Deinstitutionalising women. An ethnographic study of institutional closure. Cambridge University Press. Johnson, K. (2005). Containing uncontainable women. In K.  Johnson & R. Traustadottir (Eds.), Deinstitutionalization and people with intellectual disabilities. In and out of institutions (pp. 66–75). Jessica Kingsley Publishers. Maxwell, N., & Leane, M. (2021). Disrupting and reimagining: Critical reflection on the development of rights based education programmes for people with intellectual disability in further and higher education. Irish Learning Support Association Newsletter Spring, 2021, 10–17. Available at: https://ilsa. ie/wp-­content/uploads/2021/04/2021-­Spring-­Ezine-­Newsletter.pdf Nic Aogáin, B., Knight, R., Melvin, M., Nannyansi, T., de Bhailís, C., & Flynn, E. (2019). Achieving a right to personal assistance in Ireland. Independent Living Movement Ireland and Centre for Disability Law and Policy. O’Donovan, M. A. (2021). The elusive inclusive university: What does this look like for students with intellectual disability? An Irish perspective. Journal of Policy and Practice in Intellectual Disabilities, 18(1), 68–74. Salmon, N., Iriarte, E., & Burns, E. (2017). Research active programme: A pilot inclusive research curriculum in higher education. International Journal of Research & Method in Education, 40(2), 181–200. Taylor, A. (2018). Knowledge citizens? Intellectual disability and the production of social meanings within educational research. Harvard Educational Review, 88, 1–25.

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Taylor, A. (2020). The metaphor of civic threat: Intellectual disability and education for citizenship. In L. Ware (Ed.), Critical readings in interdisciplinary disability studies (pp. 53–68). Springer. (Chapter 5. Walmsley, J. (2005). Institutionalization: A historical perspective. In K. Johnson & R. Traustadottir (Eds.), Deinstitutionalization and people with intellectual disabilities. In and out of institutions (pp. 50–65). Jessica Kingsley Publishers. Watson, D., Lawless, M., & Maître, B. (2017). Employment transitions among people with a disability in Ireland: an analysis of the Quarterly National Household Survey, 2010-2015 (ESRI Research Series). ESRI, Dublin.

3 Self-determination Liz Tilly

This chapter is introduced by Liz Tilly with stories from members of Building Bridges and CASBA an advocacy group in the West Midlands. It also features two aspirational dance stories—of Emma and DanceSyndrome.

The chapter on the right to self-determination covers these three articles: Article 10—Right to life Article 12—Right to equal recognition before the law and legal capacity on an equal basis with others. Article 29—Right to participate as equals in political and public life. Introduction Self-determination is about choice and control, words that are often used in connection to good practice when supporting people with a learning

L. Tilly (*) Building Bridges, Halesowen, UK e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2023 L. Tilly, J. Walmsley (eds.), Rights in Practice for People with a Learning Disability, https://doi.org/10.1007/978-981-99-5563-3_3

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disability, and a central tenet in recent policy papers such as ‘The Learning Disability Improving Lives Programme’ in Wales (Welsh Government, 2018) and England’s ‘Valuing People’ (Department of Health, 2001) which focussed on rights, choice, independence and inclusion. Sadly, the lives of people with a learning disability are often controlled by parents and professionals, and restricted by the confines of service provision. It can be a challenge for people with a learning disability to experience self-­ determination and be in control of their own lives. ‘Valuing People’ was published in March 2001: the first white paper about people with a learning disability for 30 years since ‘Better Services for the Mentally Handicapped’ was published in 1971. It applied to England and Wales. Scotland has its own version, ‘Same As You’, published in 2000. The 1971 white paper had assumed that ‘better services’ were the solution! Thankfully there has been progress, and seeing segregated services as the answer has now  been replaced with community inclusion. ‘Valuing People’ and ‘Same As You’ focussed more on citizenship, working together so that the lives of all people with a learning disability are improved. Self-determination is also an underpinning value in the Care Act 2014 (England) and the Social Services and Well-Being (Wales) Act 2014. Both legislate that people should be supported to realise the outcomes they want for their own life. But what do these rights mean in reality; what is self-determination all about? Self-determination is explained by Simon Duffy in his book Keys to Citizenship as being in charge of your own life and being treated as someone who counts, has their own voice and interests and a life that is genuinely their own (Duffy, 2006). The self-advocacy movement has had a key role in promoting self-­ determination. It is a space where people with a learning disability can be supported to have both an individual and a collective voice and be more assertive and create change for themselves and others. It has long been recognised that it is a powerful tool in enabling people with a learning disability to fight for their human rights (Goodley, 2000). The self-­ advocacy movement is still vibrant in the countries featured in the book, despite there being many recent challenges to funding the running of local groups.

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Many people with a learning disability are still referred to by professionals and academics as ‘services users’, regardless as to whether they use services. Other terms such as ‘clients’ or ‘consumers’ are still often used. These terms give people with a learning disability a label which suggests they are not full citizens and that their disability and need for support from services is their main identity. And it ‘others’ them from being a full member of society. Such thinking gave rise to the slogan much used in the self-advocacy movement: ‘Label Jars Not People’. In this book, by contrast, the focus is on active citizenship, people with a learning disability as equals albeit that they may need care and support with aspects of life. We have long recognised that services for people with a learning disability by their very nature exist with a power imbalance, with paid staff holding the power and control to make decisions, unless they are proactive in enabling choice and control (Broussine & Scarborough, 2012). The person-centred approach, which puts the person at the centre of all that is planned and arranged for their lives, has made good progress at enabling some people to have more control over their lives, choices and decisions. But there are many people with a mild learning disability who are not eligible for support from paid staff and so ‘fall through the gap’ and are left to navigate their way through mainstream services. It can be particularly challenging for this group to enjoy control over their lives and full citizenship. Self-determination needs to have ‘the means’ as well and ‘the opportunity’. Having enough money is an essential part of being in control of your own life and being able to actualise your dreams and fulfil your best lives. For some people, it has not been possible to actualise their plans and dreams as they do not also control their money, or they do not get sufficient income to pay for the life of their dreams. Having the right support from peers, friends, family and paid workers is also essential (Williams, 2013), as these stories illustrate so well. Sadly, despite the policy rhetoric, not all people with a learning disability enjoy their right to self-determination. But there are many people who do. This chapter contains stories where people have shown strength and determination to have a full life and take active roles in their communities. Some are everyday stories of being part of the community and

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some where people achieve amazing things through dance. It includes stories from members of a self-advocacy group from Birmingham who exercise their rights to speak up, speak out and make their own choices and decisions.

3.1 Kraig’s Story: Self-determination Kraig is a member of Building Bridges. He’s had a number of personal challenges over recent years, not all of which are disclosed in his stories. But by his own admission, life in the past didn’t have much purpose, and he masked the problems of the past and lack of hope in the future by spending too much time in the pub. This led to further problems relating to money and mixing with the ‘wrong sorts’. This story, although short, shows how someone with the right support from a number of small organisations and opportunities to be engaged in positive activities has turned his life around. This has enabled him to enjoy all aspects of citizenship. I met my wife when I went to play in a learning disability football tournament in Leeds. Teresa came to support us and that was it—we’ve been together since then. This was 20 years ago. But for a while I wasn’t part of any groups and I didn’t do much and I spent too much time in Wetherspoons and I didn’t eat well. I didn’t want to eat as I was drinking too much. But I am eating more now and on my vitamin D tablets. And it was hard to sort my benefits out; they want to do it on the phone not face to face. (This is hard for Kraig as he also has a hearing impairment.) At that time I didn’t really know anyone or have any good friends. I got banned from the pub. It wasn’t my fault. I got blamed for cheeking the bar staff but I didn’t do it, it was the people I was drinking with. I don’t see those people now. I try and keep away. And there wasn’t much to do. I’ve got a lot more friends now. And now I’ve got involved in loads of organisations and my life is much better. My confidence has increased a lot lately, as I am proud of all the things I have achieved. I’ve just started to play badminton with Special Olympics and I found out I’m really good at it and I’ve played for the

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region in a national competition! I also play Boccia. I have a competition to go to soon; we play in a team of 3 and I am the captain. We play against another team of 3. We’ve had some new balls recently so it will be better. I hope to win some more medals. I do athletics too. Having the opportunity to learn new skills has really increased my confidence. I have the right to learn things and be included in my community. And alongside this I’ve also made lots of new friends. I’ve been on a computer course and now I can do cut and paste. I have made a PowerPoint and we are learning how to use excel and emails. But I need help sorting out my password as I can’t buy anything online until I have. I also help Building Bridges produce easy read. I can help find the pictures, click on it and copy and paste now. Easy read is important so we can understand the writing better. I also go to the Coronation Club on a Monday night, they have a learning disability disco, and the Mencap club on a Saturday. So I have found 2 different local discos in the evening for people with a learning disability. I take my friend with me, who lives round the corner. Liz says I have given him a new life too as I take him everywhere. We went on the train to see Coventry Cathedral a while back. Now I have a very busy week and now my life is so much better! I’ve come a long way—get what I mean … and I’ve met some new people as well. I feel better for it. Top Tips • Get out and about and meet people. • Don’t get involved with people who get you into trouble. • Join groups so you have something to do every day. • Special Olympics sports and competitions are very good. You get the chance to compete, go to new places and make friends.

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3.2 Chrissie’s Story: Working at the Charity Shops Chrissie has been working at charity shops for over a decade, giving regular voluntary support and taking an active part in public life, despite the challenges she outlines due to her learning disability and health issues. For many years I worked at Barnardo’s, and now at Cancer Research shops. This is my story about working at Barnardo’s. I started in 2011. I first went as part of a Jobcentre scheme, now I’m there as a volunteer. We raise money for kids and young people, some have no parents. I have to sort the clothes out at the shop. The manager gave me the title of ‘Queen of hanging and tagging’. I teach other people how to ‘hang and tag’. We have school kids for work experience and I have to teach them what to do. We also have university people—they are on top of us as they are brainier than us—to learn how to run the shop. And we have college students on work experience too. The manager and the deputy are paid. The rest of us are volunteers. Sometimes we have other people with a learning disability in the shop but they are brainier than me and they get trained to do more jobs like use the till. I can do the till but I can’t do it on my own. I don’t know how to do the change; the manager shows me what to do. Some of the things we sell are gift aided. If you pay tax, we make you do gift aid. Our shop is on lots of floors. You have to climb 4 flights of stairs to get to the top. When you get a delivery it’s hard as the shop is on the bottom and the stock is sorted, hanged, tagged and steamed upstairs. When we have a delivery, we do it like the soldiers do—we pass the bags from one to another up all the stairs. When things haven’t sold, we pass our stuff to another shop—we call this ‘decoding’. The clothes could go to any shop. Someone is on top of us and they check we are meeting our sales targets and that the shop is nice and clean. I am proud of myself; I have been there 11 years and until recently I was there 4 days a week. I walk there; it’s about 15 minutes each way.

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I do it as I like to help, and it gets me out of the house and I make friends with the other volunteers. We had a big party when one of the managers left recently. When I lost my Mom, she gave me a big hug. She had to leave as she needed more money to pay the bills. Some people come and steal things from the shop! They put it in the prams and under their clothes. So now we have mirrors all around the shops and we have walkie talkies to talk to the police. But you must never risk any harm to yourself, so if I see something I call the manager. She asked the person to show her their bag, and she locked the door and called the police. Once someone walked out with the hanger still on. And sometimes children steal the toys! If the shoes are from Clarks, we have to hide them under the till! But this year I had to leave Barnardo’s shop as too much stairs, 4 lots of stairs! my bones can’t cope with the stairs. I was at Barnardo’s 12 years! At the Cancer Research shop there is only one lot of stairs to the toilets. The manager was gutted that I was leaving Barnardo’s as I can do the hanging and tagging properly and I have to teach the new people. I ay getting any younger! I only left cus of the stairs! The cancer research shop is all on the level. The staff are nice. My nephew also works in the Cancer Research shop—he works on the tills, and my sister Ang. Top Tips • Help in your local charity shop—they need people! • It’s good working with other people as part of a team. • Ask for help when you need it.

3.3 CASBA: Making My Own Choices CASBA is an advocacy organisation in South Birmingham. The people writing this are the CASBA Ambassadors. It is written by Christine and Martin Spooner, Janet Kane, Ann and Brian Cole, Pat Geobey, Doris Tweede and Mark.

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The Ambassadors group started in 2016. Ambassadors raise money, make sure people know about CASBA and help run the charity. We meet every 2 weeks. Here are some of our stories: My name is Janet. I live in Birmingham. I have a son and daughter. My son still lives with me. My daughter lives with her husband. Before I came to CASBA I did microwave meals. When I joined CASBA cooking class we got support on how to follow a recipe. We started doing things like soup, spaghetti bolognese and pasta. I enjoyed the cooking. It’s made me more confident and I can cook a Sunday dinner now. I’m Martyn. I’m married. I’ve done lots of cycling for charity, but I haven’t got a bike anymore and the charity I used to ride for is no longer running. I got to know about CASBA in 1998 when I came with my wife. Ever since I’ve been more involved in CASBA. I became an Ambassador then I was voted as the chair of Ambassadors. I have been the chair for at least 3 years. I got involved with the board meetings as an Ambassador representative and now will become a Trustee of CASBA. As a representative I read statements of what the Ambassadors are doing and then report back what has been said at board meetings. When I’m a Trustee I think it will be hard work. It’s difficult to understand what they are going on about, but I am sure I will understand more as I go along. My learning disability is not so severe as some. We raise money for CASBA doing sponsored walks. We did six walks around Birmingham parks and the canal path. These were between 2 and 6 miles each. We raised £2000 for CASBA. Before lockdown, we used to make cakes with our volunteers to sell at local carnivals. As part of a Heritage Lottery project we did some drama at an event to celebrate the project. Life was very regimented in the hospital and there was no privacy for the patients, although people made some great friends. We helped Rita with West Midlands Self-Advocacy Network with questionnaires about transport and health services. Although there is Ring and Ride for older and disabled people it’s difficult to book and won’t go to some areas of the city. Many bus services in the city have been

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cut and some of the bus stops taken away which has caused problems for some users. One of the places we visit to tell people about CASBA is ‘The Beach’ at Kings Norton Green. ‘The Beach’ is for people who cannot get to the seaside. It provides loads of activities and a huge sand pit. We made playdough the day before and played with the children who came to the Beach. We let people know about CASBA and what we do, and how CASBA gives people with learning disabilities somewhere to go which is safe. It was such a success last year that the Ambassadors have been asked, by the organisers, if they can volunteer every day for the event this year. By getting more confidence we can speak up for ourselves and other people with learning disabilities and share our experiences. I’m Pat. I found out about CASBA when I went to the Neighbourhood Office. My advocate helped me with a lot of things. With my benefits and when I had trouble with my neighbours, especially when I lent them some money. My advocate wrote a letter to him and I got it back in the end. When I first came to CASBA I was very quiet and I wouldn’t speak to anyone because I was shy. Now you can’t shut me up, and it’s because I have made friends. I’ve not had that many friends in the past because other people have used me. My friends asked me to put my name on a housing association list so I can live nearer to them. I didn’t think I would be able to get a house there, but I did, and now live in the same area as them. I can go out when I want to and come back when I want to. If I’m away for a couple of nights I have to let the support manager know or pull the cord to let them know in case of fire. I’m Ann and I’m an Ambassador. I’ve been coming to CASBA since 2014. I got  to know about CASBA through my friend who’s also an Ambassador, who I met in 2011. I really enjoy the group as well as meeting friends. With friends you are never on your own. I’ve advertised CASBA on videos. I’ve also helped on Christmas stalls for CASBA. I represent the Ambassadors at Heritage Project meetings. I acted in a play for the Heritage Project. I helped raise money by going on sponsored walks for CASBA which I enjoyed.

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We go to conferences to tell people about CASBA and share our knowledge and experiences. In 2022 we talked to young people with learning disabilities transitioning from school. We have also talked to learning disability nurses across Birmingham. We visited staff at Lloyds Bank to have discussions on what support they can give people with learning disabilities when they visit a bank. We talked to them about help that CASBA could give them. We gave out leaflets and talked to them about ourselves and how we coped with having a learning disability as adults. Our videos have included: • During the pandemic telling people that we had the vaccine and how important it was. • To raise awareness with local councillors and MPs on the effects of having the Covid top-up benefit taken away. • Keeping safe in hot weather. • The importance of getting the Covid vaccine (we had a friend who died early on during Covid). We put most of our videos on CASBA’s website and also on CASBA’s Twitter account. Some are available on YouTube. We are making 4 videos at the moment for Birmingham City Council on domestic abuse and producing 4 leaflets to go with the videos. These will be available to organisations across Birmingham who work with citizens with learning disabilities. They will be available on our website and YouTube. Public Transport Travelling on buses can be an issue as it is difficult to get travel information. Passenger assist on the trains doesn’t always work. Sometimes you have to go and find the people who should be helping you. Making and Keeping Friends My name is Doris. I live on my own. I used to have friends, I used to go out with them, but they all moved away. It can be lonely. I used to work at the café in ASDA pot washing but was made redundant.

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When I went to the Job Centre, they told me about CASBA. Coming to CASBA I meet everybody and have meetings with the group. I was a bit scared when I first came to Ambassadors, but it got better and I talked to more people. I like doing activities and acting. I have more friends now and go out with them outside of CASBA. I’m Christine. I’m married and been with my husband for over 20 years. I live in a high rise flat but I want to move. I went on the Management Committee of People First in London for a couple of years as a campaign officer and other posts. Then a few years ago I was elected Chair. I chair meetings, supervise staff and sign staff access to work forms. I make sure who we hire to work. I have to do disciplinaries and decide who gets sacked or who is made redundant. The most difficult bit is telling them if they have job because you have to let someone down. As Chair I’m part of governance and management, I have all of the responsibility. I attend governance training. The most rewarding part of my job is seeing People First still going after everything, especially as so many Self-Advocacy organisations have disappeared. Self-Advocacy is really important. I have been with CASBA for over 20 years. I have helped them as a volunteer for the last 7 years and have helped the Ambassadors to grow in confidence because of my knowledge of self-advocacy. I have also helped them set up a new self-advocacy group. This job helps me know how management works and gives me insight to do more Trustee stuff in the future. I am also a Trustee for WISH Women’s Mental Health Group which is based in London. I am learning sign language and am a volunteer with Northfield Arts Forum and the community café and warm spaces scheme as well as an Ambassador for CASBA. Life is full so I will find my next goal with the experience I gained from this. I’m Mark; I go to college and do cooking at college. I live independently. I have support to pay my bills. I like going on holidays and football. I represent people with learning disabilities at Neighbourhood meetings in our area. I tell people about learning disabilities and find out what’s in our area. Neighbourhood Network Scheme meetings. I help them decide what services are needed in the area and then report this

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back to the Ambassadors. These meetings are mostly attended by professionals from the voluntary and statutory sectors. I have become extremely confident in speaking up for myself and I’m happy to share ideas in the meetings. Family and friends are very important to me. I have a great sense of loyalty to my friends and the area I live in. I will often contact my local MP or councillors if I am concerned about an issue that crops up in the news or in the local community. I used to ask for help to do this. Now I don’t have to as I have the confidence to do it by myself. The last time I contacted them was about the change in benefits after the last budget statement. I have lots of friends and family. I go with them to the cinema and for meals. Top Tips • No one else knows what you know. Your view counts. • An advocate will help you speak up if you’re nervous. They’re free! • Many advocacy organisations have self-advocacy groups. These will help you learn skills and get more confident. Contact your nearest one to find out more. • Speaking up for yourself is good for you. CASBA Ambassadors speak up for themselves and help others to do the same.

3.4 Even Though I Have Down’s Syndrome I also Have Dance Syndrome DanceSyndrome transforms lives through inclusive dance! Message from Jen Hello! I’m Jen, Creative director and founder of DanceSyndrome. Mum, Dad and I set up my dance company in 2009 when I was 28. In 2010 we advertised for dancers, found 100, met 35, chose and invited 14 dancers to join me. In 2013 DanceSyndrome became a charity and is now a multi-award winning inclusive dance charity and a really exciting place to be!

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Fig. 3.1  Pictured from left to right: Peter Pamphlett, Jen Blackwell, Lewis Barber, John Hendrickson and Michael Cooke

DanceSyndrome is led by me and my fellow dance leaders who all have learning disabilities. We work professionally alongside non-disabled dance artists (Fig. 3.1). Together, dance gives us a voice to be heard. It is our language of communication. If in doubt, dance it out! I am a dancer, a dance leader and a flautist. I also love to ski and do karate. But I get up to dance. My morning wake-up routine is a Zumba workout. Dance is in my veins, it’s in my heart and in my soul. It’s my life, my everything. Ever since leaving school at 18, I wanted to share my passion for dance with the world, to get everyone dancing, no matter who you are or where you come from. At 40 I’m a community dancer who happens to have Down’s syndrome. I have always danced and I’m on a mission to share my passion for dance so that everyone can experience its joys and benefits. I firmly believe that even though I have a disability, my disability doesn’t define who I am.

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I have the best job in the world! When I was young, I danced to the bathroom in the morning, danced while putting the shopping away and during my 10 minutes of ‘chill’ time before bed, I put the music on full blast and danced my heart out. The floorboards of my bedroom bounced as I went for a full-on dynamic workout. 10 minutes later, I would be tucked up in bed and sound asleep. My mum and I looked for more than 10 years for opportunities for me to train to be a dance leader. Eventually, we gave up and decided to try it our way—not having any idea where it might lead! What’s next? I want to travel the world with my dance charity, to be valued and respected for who we are, and to get the whole world dancing. About DanceSyndrome I’m Jen’s mum. At DanceSyndrome, every person is recognised for who they are and everyone contributes. There is no discrimination. We welcome everyone. There are no doors to knock on, no barriers to break down. You belong. We provide inclusive dance workshops, leadership training and performance opportunities for people of all abilities using a unique co-delivery model—people with and without disabilities work together to offer high quality dance provision. DanceSyndrome has 200 weekly dance participants, in person and online via Zoom. In 2021–2022 we met with over 4500 people through our outreach and performance work. Our audiences witnessed people with learning disabilities as successful leaders and performers. Hello, I’m Donna, Jen’s lead carer. This is how I started: I was practising a routine in my dance studio when a very quiet, shy but poised looking young lady walked through the door with her mum. Little did I know that this would change my life forever. That was back in 2011 and 12 years down the line, how my life has changed! I’m now Jen’s lead carer, and her best buddy, as well as dance artist for DanceSyndrome.

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Jen’s learning disability never stopped her from having hopes, dreams and passions for a career in dance. That is not to say that she hasn’t faced many barriers in realising them because of it. Every lesson I take with her turns out to be a lesson for me too, not only as a dance teacher but also as a champion of inclusion. Nothing in the dance world compares to this. Why Did You Set Up DanceSyndrome? Sue—people with learning disabilities are often written off at birth, not much is expected of them and they often have life-threatening health issues. So it was for Jen but now, aged 40, she is thriving, fitter, healthier, more active, engaged and happier than ever, turning norms and assumptions upside-down. Learning disability, dance and leadership are not naturally found together, but Jen wanted them all. These are the foundations of DanceSyndrome. Access is a huge issue. To join a dance group a person with a learning disability needs a supportive carer/friend to find opportunities, make enquiries, help with travel, advocate, check that there is a warm welcome in the class, AND that person needs to be able to engage with you and respects you for the unique individual you are. Jen—Mum and I spent 10 years turning over stones, trying to find opportunities for me to train to give me the skills I needed to be a community dance leader. Jen’s Route to Success Sue—Jen left her mainstream school with mainstream aspirations. I believe it was Jen’s right to be offered training to pursue her career. When Jen was 19 we were invited to our first conference on Dance and Disability in Manchester. We asked 200 delegates where we could find the training we needed. The resounding answer was that it didn’t exist, and then we were mobbed by so many people interested to connect. We searched for this training for 10 years. Then we decided to try it our way.

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Barriers The team has experienced lots of challenges and barriers. These include simple things like venues not offering wheelchair accessible dance spaces, dancers who do not have enough support/care provision, lack of money and of course transport. Many times people say they are inclusive. They invite us to events but do not appreciate that inclusion is more than just inviting someone. They need to make changes if everyone is to be part of it. Our dance sessions are open to everybody, regardless of disability, age or previous experience. Our Dance Leaders understand the barriers that people might face when joining a new group or dancing for the first time. They have been there too. Together with Dance Artists, they help people to adapt dance movements to suit their own bodies and abilities. DanceSyndrome welcomes people to become part of the ‘dancing family’. This helps people grow in confidence, feel less isolated and learn new skills. These can be transferred to other parts of their lives. People of all abilities learn to understand their skills and strengths, then they can grow their ambitions and future plans. Many people progress to other community activities, including voluntary and paid employment. For those who want to go further, there are opportunities for people to learn to be Dance Leaders, performance artists and choreographers. These opportunities are hard for to find in wider society. What Difference Does Your Work Make? Jen—DanceSyndrome is lifechanging. I’m living my best life through dance. We’re blazing a trail to better futures for ourselves and others through equality and opportunity, by following our dream. We are breaking the mould. Marginalised people, who are so often written off or dismissed by society, are the leaders of DanceSyndrome. Sue—Together, we build communities where every person has respect. Then extraordinary things happen. Dancers become carers and carers become dancers. Everyone discovers talents they had no idea they had! Every person makes a contribution.

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How Are People with a Learning Disability Involved in Delivering or Managing this Work? Sue—People with learning disabilities truly are our leaders. All our activities are co-led and co-designed by people with learning disabilities in visible leadership roles. The Dance Leader team includes individuals with a range of disabilities including Down’s syndrome, quadriplegia cerebral palsy, non-verbal communication, speech impairments and mental health conditions. If a Dance Leader is not available, DanceSyndrome cannot deliver whether that’s a keynote address for a conference, a performance, workshop, university seminar, black tie do or community platform. Which Area do you Work In? DanceSyndrome used to only work in the North West. However, in the pandemic we started online dance sessions via Zoom. This enabled us to reach the whole of the UK AND people from as far as South Africa, Europe and the USA! These sessions remained popular even after the easing of lockdown rules, because similar provision does not exist anywhere else. A real positive to come out of the pandemic. Ellie Bamber Ellie from Blackpool joined DanceSyndrome in 2021, aged 21. Dancing on a stage makes me feel alive and sharing the experience with my friends makes it extra special. The whole process has really taught me to speak out, to give ideas, listen to others, to take feedback and act on it to get better and better. I have danced from the age of two, but sometimes struggled to fit in with my learning difficulties. DanceSyndrome welcomed me with open arms, and I now feel I belong. My dream is to teach children with special needs dance. I have just completed my level two Dance Leadership qualification with DanceSyndrome and feel really positive that my dream will come true. My learning difficulties won’t hold me back.

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Peter Pamphlett Peter, from Salford, was one of 14 dancers who started DanceSyndrome and has been a member ever since. DanceSyndrome has helped me because I’m able to do things at my own pace; I’m never rushed. DanceSyndrome has made me more confident and I have learned lots of new things, but especially how to be a Dance Leader. I now have so much experience that I help to deliver the Dance By Example training courses and training for university students. I can see my friends learning and growing and now I know how to support them to achieve bigger things too, like leading workshops and special events. I’m always proud of the work we do. It’s inspiring to see people make progress and see the really good work that people do in our sessions. There are times when I feel very proud of myself too. When I was leading a training session in Nottingham a professional Dance Artist said to me that I had made the instructions so clear and explained it in a way she had never thought to do. It’s a great feeling to know that you can help people who have been professionally trained to learn new things and see a new way of doing things that includes everyone. Simon Rich I am the very proud father of DanceSyndrome Dance Leader and Ambassador, Becky Rich. She is a wonderful young lady who also happens to have Down’s syndrome. DanceSyndrome has answered all of Becky’s dreams and also those of so many others. As a consequence DanceSyndrome has an enormous positive impact on local families and communities. Becky and all those involved with DanceSyndrome now have real, meaningful purpose in their lives almost entirely due to their involvement with DanceSyndrome. Becky is now fully occupied throughout the week, not only with DanceSyndrome sessions but with voluntary work with other local organisations. This work led to her being nominated and ultimately winning the Lancashire County Council Award for ‘Volunteer of the Year 2016’. There is absolutely no doubt that all of this has only

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been possible due to the tremendous work of DanceSyndrome. Becky is not alone; this applies to many others involved with DanceSyndrome. DanceSyndrome’s success is undoubtedly due to the equal status of individuals with and without disabilities. The inclusion of people of varying abilities is wonderful for me as a father to enjoy and admire. A major concern for all parents of children with varying disabilities is their futures, most notably after school and college. There can be no greater satisfaction for a parent to see their son or daughter thrive. To see them happy, fulfilled, having fun and inspiring others is all we could wish for. In my case, and for so many others in our local communities, this has been due to the exceptional work and unfaltering dedication of all those involved with DanceSyndrome. Top Tips • Dream—follow your heart—it’s the nugget of gold inside you that’s important. • Believe—be true to yourself—people around you must believe in you and your right to a life of your choosing. • Achieve—if it needs doing, just do it—you may not know ‘how’, but others must be prepared to help you on your journey. • As a parent, I would say that the most important thing to do is to listen; listen to the words AND the body language, listen with your heart and your mind, listen intelligently. • At a time and a place that works for the person with learning disabilities. Check and double check your understanding many times over.

3.5 ‘Life wasn’t as easy. You grow up fast.’ Pauline Skehan Pauline Skehan is a member of the Clare Research Group in Ireland. She reflects here on her education and the particular course her life took when, as a young girl, she stayed home to support her family at a time of economic need. My name is Pauline Skehan. Education helps people. It’s important to get a good education. If you don’t get educated you won’t get a good

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paying job. I’ll tell you what happened to me now; I was one of five brothers and sisters, the middle one. I went to school with two of my sisters, to the Convent of Mercy, Kilkee. I was a kind of quiet withdrawn person. I didn’t talk much so they wouldn’t play much with me at school. They didn’t know what to make of me. I didn’t mix in with the crowd. I see now if you don’t mix in with the crowd you won’t fit in. I didn’t like to wear glasses so I couldn’t see the board so well for doing the sums. But I was good at everything else. You must converse, you must talk, you must meet halfway. I had that quiet stigma, a quiet person you know. I remember I was going to school and I had a green bonnet on and old Fr Grace, he was there long ago, he said to me ‘Pauline spell elephant’ e l e p h a n t; I was able to spell elephant. I was only very small and he was amazed that I could spell it. I was very good at spelling at school. I excelled. I used to be good at compositions at school. I would’ve done the primary and the leaving (cert) but my mother and my sister Irene went to England at the time (to look for work). And there was only my father, my little brother and sister at home. So I had to go home to take care of them at 14. The Sr A____ at the school said, ‘Wait for next year and you’ll do your leaving certificate’. But I couldn’t because they needed me at home. I remember there was a big tin bath and a scrubber board and I used to use the scrubber board on my sister’s sheets and my father’s clothes. I used the scrubbing brush and worked like a Trojan. There was nobody else to do it. Life wasn’t as easy as you think. You grow up fast. After a while I went to computer classes at the community centre and passed my intermediate class. I did three of those. I was about 35 at the time. When I lost my house in Kilkee I decided it would be cheap to move to Journeys End (privately rented Brothers of Charity supported accommodation). I didn’t know it was Brothers of Charity when I moved in with M____ who was being supported by West Clare services. I’ve vast experience now in advocacy. Its 14 years since I started. I also have my own radio program which I’ve been running for over 15 years. I’ve been with that radio station (RCB.ie community radio) since it got off the ground. I was there at the beginning, 25 years ago. I got good

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education from Clare FM through Paula Carrol who conducted workshops making radio programs when the radio station started. I did drama training on a group run by_the community (mental health) nurse … choreography and basic acting skills. We performed at the county theatre venue Glor several times. I did my Marilyn Monroe impression ‘Diamonds are a Girl’s Best Friend’ and the child star Shirley Temple. The audience roared the house down. We cut a disk, a CD and sold copies to friends and people out in the community. Drama is something interesting to get involved in. It helps bring people together in the community. When the West Clare poetry circle Sandwaves started, I began writing, but I didn’t know I had the gift for poetry dwelling within me until I started writing with Brendan (Clohessey, well known Kilkee poet). He was a good friend of mine and a gifted poet. He encouraged me to write my own poetry. And he used to type my poems in the early days. The novelist Jerry O’Neill came to the poetry circle. His books were famous in England and in our local library. The more I went to the poetry circle the more I learned. I learned about rhyme. I know some poems don’t rhyme but I get a kick out of making words rhyme. I have poetry books out to my acclaim and I have sold them in the local community. I’ve also done recordings of my poems on cassette and sold them door-to-­ door to my friends and people I know in the community. I got involved in the Inclusive Research. I interviewed people about medication. Sometimes people are given tablets secretly in honey or syrup and they don’t know what they’re taking. They don’t even know what effects the tablet has. We said that was wrong. Some people get too much medication and nothing is done about it. And some people said they had been forced to take medication. There can be too much medication and too much medication is bad. Doing research has helped us to explain that to organisations who run services. We also did research about people with disability and their experience of going to the doctors. I really enjoyed being involved in the dramas we did after that research. We showed people trying to stand up for themselves. The person with a disability was saying to the doctor in the drama, ‘You can talk to me. It’s about me. I need to be told.’

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People came up to us afterwards. They said doing the drama gave us a great idea about what people felt when they went to the doctor and were ignored. Talking about this research might help people if maybe they had a phobia about going to the doctors or if they had to decide whether they want to go to the doctor alone or with support. What the pitfalls might be. Some people said they would like to talk directly to the doctor. They said the supporter was given all the talk. People who had something wrong with them went to see the doctor and weren’t given the chance to talk, have their own independence, their own voice. I think mostly research is good. It brings things out into the forefront. If you can get a person to open up who’s in trouble, then they should be encouraged. There’s a lot of people who need help. They should be encouraged to stand up for themselves, stand out and not be ignored. We need advocacy. It needs to be there. You’ll cope if you know there is an advocacy group out there. If it looks like people won’t join in we have to convene meetings. Tell them what the research is going to be about. Get more people to support and to help you. I’m getting lots of emails from ResearchGate telling us about the citations of our manifesto for inclusive research. They’re saying things like, ‘We need your work’. People with disabilities long ago were treated differently, they were brought to different schools, there was a stigma attached. It’s a question of equality, people with disability with everyone else, educated together.

Pauline’s Top Tips If I had stayed on with my education I might have become a typist or done some other job but I would not have met the people I have met doing my work as an advocate for people with disability and friendship is more important than riches. Helping people with disabilities is more worthwhile.

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3.6 Emma James-Jenkinson: I Will I live in Bootle, Merseyside. I was born in 2003. I went to Cambridge Nursery School, then Bedford Primary School and then Hillside High School, pretty much like my sisters and brother who are older and younger than me. I have always loved to dance and perform. Dance is what I do. Dance is who I am. Dance is what I wear. Dance is my voice. Dance is where my friends are. Dance is what my friends love to do. Dance is where I am happiest. I am a student at Jelli Theatre Arts College in Liverpool. I started there in 2019.

There I achieved— • L1 Certificate in Performing Arts • L1 Diploma in Performing Arts. • BTEC L1 Certificate in Vocational Studies with the main focus on Performing Arts and BTEC L1 Diploma in Vocational Studies with the main focus on Performing Arts. • I have learnt a lot and had lots of chances to perform. • I have made lots of friends—even Covid could not stop us! • Watch me dance …. • https://youtu.be/Dz0Zr4eQ7Ls • In 2022 we danced on the main stage at MOVE IT at the EXCEL in London. • I was the only person with Down’s syndrome to perform on the main stage. • MOVE IT is the world’s biggest dance event. • We danced in front of 3000–4000 people.

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We represented England at the Dance World Cup in Spain in June 2022. I do not know of anyone else with Down’s syndrome who has performed at the Dance World Cup. I am proud to have had the chance to go to perform with 120,000 young people from 62 countries. We had a fabulous time dancing, going out at night for a drink and food. It was the best time. In 2022 I trained to be a Dance Leader with DanceSyndrome. I paid for this training myself. Being a dance leader means I am qualified to work with a dance artist/teacher to help other people enjoy moving and dance. I work with Misha, a qualified dance teacher. We get paid for teaching people dance (Fig. 3.2).

Fig. 3.2  Emma with her dance teacher

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Will my dreams come true? • Of course they will if I decide they will—with a little help from my friends and family. • Never doubt me—I WILL

3.7 As the Swan Glides, its Feet are ‘going like the clappers …’ Lynn James-Jenkinson Lynn, Emma’s mum, explains here what went on behind the scenes to enable Emma to live her best life. I am proud of my daughter Emma James-Jenkinson and she is proud of herself—rightly so. I am her (self-appointed) No.1 Cheerleader. I have 6 children. All have had ‘special needs’ at times, and for all of them, I will always be their back stop. Emma happens to have an extra chromosome and the support she has needed from me has been different. Not because of the chromosome, but because of the things our Health, Education and Social Care system does to people. Being the relative of someone who needs support from public services requires a different skill set, different energy levels and it is a ‘forever job’ because accessing the support is exhausting. We had battles from the beginning. We were determined that Emma would enjoy the benefit of mainstream education—being visible and known in her community. One day, when Dad and I are dead, if someone is being mean to her at the bus stop on Southport Road, the chances of someone walking by who knows her is much higher. She is a part of her community. The move from Nursery to Primary school saw us moving house, purposefully, to secure the support Emma needed in school delivered in a way that made sense. The first ‘engagement’ I recall was with a teacher. ‘We think Emma would benefit from an extra year in reception’. NO—‘don’t you want your child to be happy?’ We pointed out that Emma had Down’s syndrome and if they were waiting for her to catch up

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academically, she might be the only child in Reception with breasts. We added that we did not think she would be happy looking through the glass door at her friends she went to nursery with, wondering what she had done wrong. We were worried that if she was not with her year group the opportunity to have a ‘special’ conversation at Year 6 opened—Meerkat alert. We were determined she would go to Hillside like Kerry and Aidan (her brother and sister). I checked with the head teacher there. Her response was—don’t let them do it, keep her with her real year group, anything else causes us a nightmare. The LEA told us—‘[O]h when she is 11 there is a lovely little school down the road. A little girl with Downs was Deputy Head Girl there.’ I asked how many friends has she got that live on the same street? What makes you think that Emma wouldn’t be Deputy Head Girl at Hillside? So, Emma stayed with her Year Group. Later, at High School, Emma’s Maths teacher wrote to me and said that she had been terrified of Emma being in her class but she could see she had learnt as much as Emma. The letter thanked us and Emma for helping her be a better teacher. Personal Budget Emma got a personal budget when in Primary school. 5 hours per week which for many years paid for great stuff to do with her friends after school. A short break for us—and she had fun. And she had a positive reputation in school because she was making fun stuff happen for everyone. However, 2015 saw a change in personnel at the Local Authority (LA) and we were forced to stop using the Personal Budget and employ a Personal Assistant (PA). They said Emma could still go to the cinema—the fact that the change meant she went with an adult not her friends was lost. Her friends were starting to do things that Emma could not join in with without support. The Future During Year 10 we started to ask about options open to Emma. We were directed to ‘the Local Offer’ website, it was one of the most depressing evenings I have spent. Everything was either GCSE entry or segregated/

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special college. There were (and are) no vocational options on the Local Offer for young people who may not be GCSE level. At this point, the next stage of our journey began. Emma had started at Loretta Legge Theatre School age 5. Their attitude was let’s throw her in, assume she will manage but be ready to provide support if she needs it. She was able to build on the physical skills her physio had started. It helped Emma be part of a wider dance family. She is loved and valued as an equal member of the team. Dance is her passion. We asked how she might access this when she got to 16. The response was ‘[W]e (the LA) are willing to consider dance as a hobby Emma, but it will never be a job for you’.

This lit that fire of absolute determination that at 16, Emma James-­ Jenkinson would not be ‘settling’ for the easy option. I contacted Jellies Theatre School who were offering a free BTEC Level 3  in Performing Arts. They suggested Emma go along to an open audition with other young people and they would take it from there. What followed were many hours of homework for us, learning enough about the rules so that we would be able to fight all the way. I asked a friend who works as an Independent Advocate to support Emma to make sure her voice was heard above her family and above the LA, to make certain that we were doing what she really wanted. Emma flew through her audition and interview with the team at Jellies—people in the real world who see opportunities and how inclusion will help their organisation rather than a list of why not’s. It makes me mad—that our disabled young people are so limited by whats ‘on offer’ when it could be so different. None of the courses Emma is doing/has done have been written by BTEC especially for her. Why aren’t more colleges making such qualifications available in other vocational subjects that would be of interest to people? Why isn’t that part of the Local Offer? Why do we talk in shocked voices about the low numbers of disabled people in employment when we do nothing to address the skills that people may need to enter the world of work.

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Don’t mention the T(ransition) word. The ambition for Adult Social Care should be to send young people a card on their 18th to say ‘hi, happy birthday, here are some numbers you might need in future if you need support’. Individuals really shouldn’t have to notice the swapping of a file. They could do some training about rights with people and how your rights change when you are 18—all young people—and that should be it, there really is no need for anything but a party. My Gran always told me to have no regrets. This is my philosophy too. For me though I guess I will carry on being a Meerkat, forever watchful for opportunities and threats, feet ‘going like the clappers’ under the surface. Top Tips • My message to other parents and relatives is you know your child, believe in yourself and do not give up if you really think you are right. • If professionals speak to you on the phone always follow up with a ‘to confirm what we discussed’ email. • Keep people who live in the real world around you. It is so easy to get sucked into believing what you are told. People who are not part of the service world will say ‘that’s stupid, let’s challenge it?’ • If you have done something wrong apologise and move on but don’t have regrets for things you wish you had done.

In Conclusion Many of these stories indicate that in order for people to live their best lives, to be in control of what happens they need both support for those aspects of life they find hard, such as help with letters and online forms like Chrissie, and for frontline services to make person-centred reasonable adjustments. A lot goes on behind the scenes to make it possible for young women like Emma and Jen to live the lives they choose, lots of battles, lots of negative assumptions to be countered. It can be done, and it should not be so difficult, in spite of rather than with the services who should be making things happen. People need opportunities to be part of mainstream life, to contribute and be part of the life of the local community.

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References Broussine, E., & Scarborough, K. (2012). Supporting people with learning disabilities in health and social care. SAGE. Department of Health. (2001). Valuing people: A new strategy for learning disability for the 21st century. The Stationery Office. Duffy, S. (2006). Keys to citizenship; A guide to getting good support for people with learning disabilities. Paradigm. Goodley, D. (2000). Self-advocacy in the lives of people with learning difficulties: The politics of resilience. Open University. Welsh Government. (2018). Improving lives programme. Accessed May 8, 2023, from https://www.gov.wales/sites/default/files/publications/2019-­03/ learning-­disability-­improving-­lives-­programme-­june-­2018.pdf Williams, V. (2013). Learning disability policy and practice. Palgrave Macmillan.

4 Safety and Protection Liz Tilly

This chapter is about the right to be safe both in the community and in services set up to support people with a learning disability. The introduction is written by Liz Tilly and has contributions from Kevin and Building Bridges in the West Midlands, Isabelle Garnett and her son Matthew, and Orla and Lisa from the Clare Research Group in Ireland. The Articles relevant to this chapter are 14, 15 and 16.

Article 14—Right to liberty and security of the person. Article 15—Freedom from torture or cruel, inhuman or degrading treatment or punishment. Article 16—Freedom from exploitation, violence and abuse.

L. Tilly (*) Building Bridges, Halesowen, UK e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2023 L. Tilly, J. Walmsley (eds.), Rights in Practice for People with a Learning Disability, https://doi.org/10.1007/978-981-99-5563-3_4

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Introduction Key strategies over recent decades including O’Brien’s Five accomplishments (1992), Wolf Wolfensberger on the social theories of ‘Normalisation and Social Role Valorisation’ (Wolfensberger, 1972), ‘Wolfensberger’ (1989), ‘An Ordinary Life’ (King’s Fund Centre, 1980) and government policies for learning disability—‘Valuing People’ (England and Wales) (Department of Health, 2001, 2009) and ‘Same As You’ (Scottish Executive, 2000)—all recognise that people with learning disabilities should be full community members with opportunity to grow social networks with people other than paid staff and to build social capital. Such aspirations also require that people be safe and protected from harm. Sadly this is often not the case and many people with a learning disability experience abuse, harassment, cruelty and are taken advantage of. The different UK countries provide protection from harm and measures to safeguard adults through legislation; for example, the requirement to have local Safeguarding Adults Boards as outlined in the Care Act 2014 (England), Local Authorities’ duty to promote well-­being in Wales and naming disability as one of the protected characteristics in the UK wide Equality Act 2010. In s66 of the Sentencing Act 2020, disability hate crime has been highlighted as imperative for response by the police and Crown Prosecution Service, and it can now result in harsher sentencing when disability is found to be the motive. Disability Hate and Mate Crime Much has been written about the issues of people with a learning disability having a history of cumulative and frequently overlooked victimisation (Williams, 1995) including disability hate crime (Mencap, 1999; Inclusion North and Coast 2 Coast, 2008; Equality and Human Rights Commission, 2011). The report ‘Living in Fear’ (Beadle-Brown et  al., 2014) said there is an under reporting of people with a learning disability who experience hate crime and harassment even though 80% have experienced it, and even when reported, it rarely results in a prosecution. There is less written about the more subtle exploitation of people with a learning disability by people who befriend them and abuse them, often over a prolonged period, often referred to as ‘mate crime’ (ARC, 2012).

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Mate crime typically starts with a person initially making friends with a person with a disability, which then goes on to become an abusive relationship. The main group of people who become victims of ‘mate crime’ are people with a learning disability and other vulnerable people who live independently and outside of the support of services, enabling it to go unchecked and even escalate (ARC, 2012; Doherty, 2020). Kevin is such a person, living alone following the loss of his father and tells his story below (Sect. 4.1). Despite the scandal of Winterbourne View in 2011 where people with a learning disability and autistic people were found to have been abused by staff in a private hospital (Bubb, 2014), there continue to be regular accounts of people with a learning disability being victims of abuse in the very services which should be supporting them to have a full and safe life. Legislation in different parts of the UK, for example in England the Care Act 2014, which  mandates safeguarding. Local Authorities are obliged to have multi-agency Safeguarding Adults Boards. The language of ‘protection’ is now replaced with positive risk taking to enable people with care and support needs to have fulfilled lives in the community, by balancing choice, control and safety. This often includes having care and activities risk assessed and any highlighted risks to be managed. All organisations providing health and social care need to have a person designated as a safeguarding lead. There is an emphasis on prevention, information and advocacy, which the following stories demonstrate as essential features in living safe and fulfilled lives. However, only a minority of people with a learning disability are known to Social Services. Many lose their ‘learning disability’ label post school, when they are not eligible for learning disability provision. The Welsh Government suggested, based on 2011 data, that approximately 15,000 adults with a learning disability are known to social services in Wales. However there are potentially at least 60,000 people in Wales not known to social services (Welsh Government, 2018) and so do not get the support they need. Therefore many people like Kevin do not have a service. In his case, he has no family and the only people who support him is a local authority appointee and friends who also have a learning disability. He is one of

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many people are outside of the scope of local authority mandatory safeguarding protection. The stories and accounts from Isabelle, Matthew, Orla, Building Bridges and Kevin illustrate these issues and challenges further. They show the writer’s resilience and the practical things they have done so they and others can enjoy their right to be safe from harm as they go about their lives doing the things that are important to them.

4.1 Mate Crime Kevin, Building Bridges Kevin lives on his own and has recently been taken advantage of by local people, some of whom also have a learning disability, but all recognise that he is a ‘vulnerable person’. His stories of ‘mate crime’ are sadly experienced by many people with a learning disability who live alone and have minimal family or staff support. Kevin speaks with a strong Black Country accent, so the ‘correct’ English word is put after in brackets for those who aren’t familiar with the accent. His experiences were told to Liz Tilly and recorded, then later written up into his story. Kevin I don’t mind living on my own in the summer months, I just don’t like being stuck there in the dark nights in the winter. I have all my meals delivered and they go straight in the freezer. Or I go for a meal at the Wetherspoons. When my Dad died, I had to move, as the house was too big and they wanted to charge me bloomin’ bedroom tax! So I moved to a flat but then the problems started. The Borrower This person, well he got to know me over the years as his sister lived near me when I used to live with my Dad. I think she told him where I moved to.

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He started trying it on and he started getting money out of me in the finish. He said he was going to borrow it but I never seen it to this day. A couple of pounds here, a couple of pounds there. But after a while it all mounts up. I don’t know why I did it. It was the way I was I suppose, because of my disability. I was frightened I suppose. So they moved me in the finish. (This was social services and Kevin had an appointeeship set up.) They moved me to where I am now. But then he found out I was living here. It all started again when he saw me in the town. I think he followed me to find out where I go now. He only gets a bit, I won’t give him a lot, just £2.50. But it all mounts up dow (doesn’t) it. He come over a few weeks ago to the Wetherspoons looking for me. He wanted money day (didn’t) he. It’s to buy his fags and beer, he spends his own in the pubs then he comes to me for mine (money). He wouldn’t be very happy if I said no, as half the time he hasn’t got any money as he spends it all in the pubs. He did knock my door when I was in my old house. Then in my new flat he had some keys off me, he said if I got locked out he’d have a spare key for me. But I think it was just an excuse. I think it was so he could get in when I weren’t there. But now the social workers got my locks changed and had a key safe put in for me. The first time it happened the police got involved but not this time. This is because I gave him the money, he didn’t steal it so they cor (can’t) do nothing. The police just warned him this time, not to do it again. They couldn’t do any more as I gave him the money. But he hasn’t done it again since then. I’d tell him to pee off if he did it again. But I have new friends now from Jigsaw (a local charity that provides a social programme). The other day we were together at Wetherspoons, and he came in, he couldn’t even get near to me and so he just went away. The Thief Once a girl who hangs around the local town turned up at the door. She said she wanted to use my loo, so I let her in. But she stole my smart watch off the table. When I went in the kitchen for some’t (something)

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she must of took it! As when she went so did the watch! I day (didn’t) see her tek it (take it) it. Thankfully my wallet and phone were in my pocket. I told my appointee and she said if she wanted the loo bad enough then why didn’t she go to the one in Sainsburys. Her come (she came) to rob off you, not to use your loo! I’ve heard she was a druggie (drug user) and wanted some’t (something) she could sell. Money for more drugs. I reported her to my appointee and they told the police and they said they knew her. I’ve seen nothing of her since then. I have an alarm I can wear round my neck at home. I’d like some cameras but the Appointeeship said I’d have to pay for them and I won’t. If I could have them for free I would. The Scrounger Then another friend knew that I have a taxi account that the Appointeeship set up to get me from A to B. This friend spends all his money on drink in the pub. He drinks several pints and we can’t get him to leave the pub at night. One evening at 20 past 11 at night, and I was at home and he called me to get him a taxi to take him home from the pub so I’d pay for it! Every time he has a taxi from me, I have to pay for it! It comes out of my bank account every month. He comes in my taxis (when they go out with a mutual friend) and why should I pay for him? When we go out together sometimes and when he’s run out of his money, he comes to we (me). I did buy him a drink occasionally but now I just get him a glass of tap water instead! It dow (don’t) cost me anything does it! He was expecting a beer and he just got tap water!! It stopped him though! Kevin’s Top Tips • Don’t answer the door to them or if you don’t know who it is. • Tell them to bugger off. • Keep away from people like that. • Know who you can trust.

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4.2 Turning Our Problems into Solutions: What Safety and Protection Means to Us Building Bridges Building Bridges is a social enterprise based in the West Midlands. We are a group of people with a learning disability who work together to do training, research, produce easy read and make resources. We have been working together since 2008. We want people with a learning disability to have a safe active and healthy life. The things we do training and research about, and the resources we make come from the challenges we have in our own lives. So, we know what it can be like for other people with a learning disability. We do our work to make a difference to our lives and to the lives of other people with a learning disability. People with a learning disability have the same right to live in the community and have the same choices and opportunities as everyone else, Article 19. This means they can choose where they live and who they live with. No-one should make them live in a place they don’t want to live in. But we know for some people they don’t get to choose where they live. They have a right to the support each person needs to live a full live in the community. This also includes support to be part of the community so people are not lonely or separated from other people in their local area. It also means people with a learning disability have a right to use the same community services and facilities as everyone else. But to do this, people need to both be safe and feel safe, and this right is outlined in Article 16. What Are Our Challenges? When we meet together, we share our lives. Some people call this our ‘lived experiences’. We talk about all the challenges we have in living independently in the community. This is things in the home, getting out and about and using services. It also includes where we do and don’t feel safe. We also talk about local issues that affect us and other people, such as people driving too fast and not stopping at the zebra crossings for us. We also talk about bigger issues that affect us and other people like climate change.

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We often have shared problems; for example, we might have problems using public transport or worries about not feeling safe when we go out. We don’t think we are always treated fairly and we want to be treated the same as everyone else. We can get frustrated when we aren’t treated the same, as we know this isn’t fair. We want to change both our lives and the lives of other people with a learning disability. We want other people to understand us better. We don’t feel safe walking about in the dark, especially on our own, but nothing bad has ever happened to us. You just don’t feel safe. So it’s worse in the winter. We don’t feel safe crossing the road either. The cars in our area drive too fast. There is no safe crossing place at our local train station, so we emailed the local council. We have a meeting with them, but nothing ever changed. A research project done by the group in 2019 found that these fears of travelling and being in the wider community could prevent people from attending other community-based activities where they did feel safe and included. You can read more about this in Mooney et al. (2019)). We sometimes ask other groups if they want to make any suggestions for easy read information for us to make. Chrissie had the good idea to make the ‘just a moment cards’. Sometimes people who work in services like housing or the Drs aren’t patient with us if we can’t understand. You can use them with the police, using transport and in the bank (Fig. 4.1). What do we do to make sure people with a learning disability have their rights? We give each other lots of emotional support because we know how hard and difficult and frustrating these challenges can be. We do this when we talk in our group meeting and in our group chat using WhatsApp. But then we think about what can we do to change things. By meeting together and talking about things we come up with lots of ideas. The main actions we do are: 1. Sending emails. 2. Asking to have meeting with our MP.

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Fig. 4.1  ‘Just a moment’ cards designed by Building Bridges Training

3. Making easy read resources for people with a learning disability. 4. Making good practice information for staff. 5. Doing research projects and telling people what we found out at conferences. Now we will tell you about some examples of these things. 1. Sending emails When we catch the train at our local train station there is no pelican crossing to get over the busy road safely to catch the connecting bus service. We think it’s too risky to try and cross this busy road, and there should be a pelican crossing to make the cars stop. So we decided to write to the council to ask for a crossing. We had a meeting with their engineer but are still waiting for them to reply about what they will do.

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2. Asking to have meeting with our MP We are also very concerned about the busy roads, and especially about the number of cars that drive too fast. It makes us more scared to go out and about on our road. So we emailed our MP and asked if we can have a meeting with her to tell her what we are concerned about. 3. Making easy read resources for people with a learning disability We make easy read resources that other people with a learning disability can use. These are available for free on our website. We talk about our lives and from this we agree what we are stuck with, or are challenging. Then we decide if an easy read resource would help. If we think it would, we make the first version and first try it out on ourselves. One of our group members has a job to find the PhotoSymbols images to put on it. Then when we have got it right, we ask our designer to make it look even better. He has been working with us for many years and talks with us about what works best. We like lots of space, colour, clear images and no jargon. This is a list of all the easy read information we have made for people with a learning disability: • • • • • • • • • • • •

Managing My Money Quiz Moving House Checklist My Keep Safe Check List Tablet and Smartphone Icon Buster Important Phone Numbers Climate change easy read information Domestic abuse—How to get help Female Genital Mutilation—How to get help Bed Bugs and what to do How to use the microwave safely What to do in a Power cut Keep safe in a heatwave

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We have also made some dictionaries to help people understand jargon words. These include violence against women and girls, training words and money and banking words. Here is some more information about some of these resources: Moving in Checklist A couple of us moved to new flats, and some people didn’t know who they should give their new address to. They forgot to tell their GP, so, and the electoral register so they couldn’t vote. So we thought of all the people we should tell and made a moving in check list Keep Safe Checklist Going out and about in the community is frightening for some of us. This check list can help to remind people what things they can do to keep themselves safe. For example making sure your phone is charged up, and someone knows where you are going and what time you will be back. Financial Health Check This form can help a person with a learning disability work with a support worker to find out where they need help and support with everything to do with managing money and a bank account Just a Moment Cards These are our most popular resources. They are cards that say ‘Just a moment, I have a learning disability’. On the other side it says some reasonable adjustments people can make like say things slowly and don’t use jargon. We invented these as we felt often front-line services didn’t adapt how they talked or treated us to take into account we have a learning disability. We use them at places like the bank, housing offices or doctors. They are the size of a credit card so you can put them in your phone, purse or wallet. So you always have it with you when you need it. It is easier to get the card out and show people than try and interrupt them.

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Smart Phone Icons We have made a sheet of the typical icons you see on a tablet or smart phone, so we can understand what the common symbols and icons mean, like settings, more, on, play, stop etc. We soon learn what the icons mean, but the sheet is useful for people when it is a new phone. 4. Making good practice information for staff We got frustrated about how staff don’t always include us in meetings and how frontline staff don’t help and support us. So we made a couple of leaflets for paid staff in frontline jobs, so they know what things to do to make it easier and help us understand more. The one called ‘supporting people with a learning disability who use your service’ is for staff who work for housing services, Jobcentre Plus, health centres and sport and leisure centres. It says things about • What is hard for people like us, such as finding places we haven’t been to before and remembering personal information like  National Insurance Numbers. • How we like to be helped, such as explain things to us more than once. • Practical tips like write dates in full including with the day of the week, not just with numbers. Our Top Tips to Other People with a Learning Disability • Be strong and remember you have rights. • Make sure staff listen to you and give you more time. • Ask for easy read letters with no jargon! • Write to your MP and the Council about the things you aren’t happy about.

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4.3 If my Child had a Disability they Would be Better off in the Local School Orla is a true ‘country girl’, brought up on a farm in Ireland. She didn’t attend the same school as her siblings and felt bullied at the special school she attended. Through community-focused supports, advocacy and inclusive research she tells us how she has gained better control over the course of her life—and found a boyfriend. (Fig. 4.2) My name is Orla McMahon. I live with my mam and dad on our farm near Aylroe Kildyssert on the River Shannon. I hope to move into my own place soon in Kilrush (market town in West Clare). I went to A school when I was around 6 or 7 and before that I used to go to a little crèche out near Ennis. We used to play in there and draw things. There were just normal everyday people in the crèche. I was only a small girl at the time I didn’t really know what was going on.

Fig. 4.2  Orla McMahon

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My mum said A would be a good school for me to go to. I could meet new friends and teachers. We used to do a lot of cooking and baking with a woman called M____ who was the principal of the school, and lots of different things like drama. We did Oliver Twist the musical. We did home economics, sewing and knitting and craft. I still know some of the people I was at that school with. My boyfriend at the moment he was there too Barry O’Reagan who is here with me at the Brothers of Charity Hector Street (Community Hub) today. One of the teachers there was very strict and a small little bit aggressive. She would shout and roar. I was frightened of her. And some of the children in the class were nasty to me. They’d call me nasty names horrible things that made me feel bad. I was bullied at that school. I did have friends who used to look out for me but still this person was there every day, the bully. He was at me inside the bus. I remember one day they hit me with a big bar on the toe and it was really horrible. It made me cry. I was home at 3 o’clock in the afternoon every day and I told my mum and dad about this bullying. My mum knew the person at the school. They were from a local village. She was raging over it and went to see their parents. That put a stop to the bully. We used to go to PE and we used to go swimming in the Ennis swimming pool. There were too many children in the school I went to. They were all crowded in and when you went to do counting with sums you’d be brought to the front of the class and have to say it out in front of everybody while the teacher was standing over you. It wasn’t really fair to me to have to stand with the teacher and do all my sums and add up and takeaway for money in front of everyone. It was embarrassing, totally. But I was also lucky to have three brothers and a sister, I’m the youngest. They all went to the local national school. If I had children I wouldn’t bring them to A school. I had a tough time there. If my child had a disability they would be better off in the local school where my brothers and sister went, if they had a teaching assistant to help them.

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Sometimes I feel as though there is a big space over me when I think about what happened to me at school, the bullying and not being treated nicely. I know if I was to go into the school now I just couldn’t face it. I feel more confident now the bullying is in the past. I get on with people and people get on with me. I’m a good person. And I feel confident and good about myself. Very different from how I felt before. I feel I was outside of the community. I didn’t go to Killydysert School, the local school. My family all went there but I didn’t. I caught the same bus as the children from the local school and they all talked to me and were very nice to me. When they got on the bus, the one that came in from my school in Ennis, they’d say. ‘Oh that’s Orla, Eoin’s sister’. They knew me ‘cos I was part of the family. That was nice. I first realised I had an interest in nature because I had a budgie called Elvis Presley. I’ve still got funny pictures of him. He was lovely. I always wanted a bird for myself … something to keep me occupied. My grandad made a little cage out of twine and twigs and you could lift it up and open and shut the cage and Elvis would fly around the room. Sometimes he even landed on my head! I miss having him around. He used to sit on my shoulder and balance on my hat. He was adorable! On the farm I used to help my dad with cows and calves and everything. We’ve had horses and pigs and sheep and goats. So that taught me about nature too. And then I learnt with the Brothers of Charity to put my nature presentations together. I did presentations at the local school and the workshop and at the Inclusive Research Network when they came to Glor (the Ennis Art Centre). I’ve also been part of a thing called Project Me (Brothers of Charity community hub in Kilrush). We had our advocacy meetings there. Before that we did advocacy in Hector Street. Lots of things came from those meetings. Now I work at RCB (Radio Corca Baiscinn) community radio in Kilkee, two days a week. We make programs about local issues, road safety, wheelchair access. We interview people on the street, find out how they feel about the town. Last year I did a presentation of my own, a CD sound recording at RCB of my nature presentations. I was National Advocacy Council (Brothers of Charity) rep for Clare for four years and social secretary for Clare Advocacy Platform (the

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County advocacy group in BOC services). I’ve also been doing inclusive research with CIRG (BOC funded Clare Inclusive Research Group). The first research project I did was in 2019 called ‘Doctors and Us’. We went round the county interviewing people asking them about what it was like for them to go to the doctor. We made a drama about what people told us and presented it at the hotel in Limerick. It was very important doing this work. I like talking to people, finding out what they think. I’ve also helped organise Dates and Mates speed dating nights. It’s important to give people chances to meet up, maybe make a new friend, maybe start a relationship, why not? You don’t want to be on your own all the time. I met different boys through Dates and Mates. And now I have my own boyfriend. We ring each other every night. I’m mad about him! Going to Dates and Mates helped me to get confidence to be in a relationship. We’re kind of helping to educate ourselves now. Giving people chances to try different things. All that came from advocacy and doing the research. We get to know what we all like to do and then plan how to do it.

4.4 From Yeovil Town to Accrington Stanley: Matthew Garnett’s Story Isabelle Garnett, with Matthew Garnett This is the story of a young man, Matthew Garnett, as told by his mother Isabelle to Jan Walmsley in January 2023. We have included it because he was subject to a stay in a hospital due to his behaviour. It illustrates how easily people can become caught up in a system which fails to protect them from abuse, cruel, inhuman or degrading treatment or punishment in the name of safety. Matthew is only free because his family campaigned for him to enjoy life in the community. It’s an ongoing battle, victory is often short lived. But as Matthew’s contribution to the story shows, it is well worth the fight.

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Matthew There is never a dull moment with Matthew; he is a force of life, lives in the moment. He has a fantastic sense of humour; he is passionate about things and curious to understand the world. He gives us such funny memories, hair raising at the time. And he is honest. He says what he thinks. Sometimes, he can be quite blunt. At his Grandmother’s 60th birthday, he greeted her with ‘Happy birthday, you are 60, you’re going to die soon’. Happily she just laughed. School He was forced to go to mainstream school because that was the Local Authority policy at the time. It’s been a life of trauma for him. There were no reasonable adjustments even though he had a statement. He was hitting out because he was worried to go to Assembly. They tried to force him to fit. And so he ran away. Despite locks on doors, reinforced glass, etc. And then he was excluded. The school’s position was that he needs to be treated like everyone else. No, that is not equality. But when I argued they put me down as a difficult pushy middle-class parent. It took two tribunals to get him to a specialist school where he was understood. The school recognised his anxiety and we fought for psychological help for him there. After a year he developed unpredictable and violent behaviours and we struggled to know what it meant. In the past we had been able to tell when he was not feeling safe or happy, that changed, we could not work out what triggered violent outbursts. The psychologist suggested we approach the NHS for help from psychiatry. Into an ATU We rue the day we went to the National Health Service for support. The psychiatrist was appalling. Matthew was already showing symptoms of catatonia, freezing as he moved from one room to another, possible absence seizures. ‘I’m old school, I don’t believe in co-morbidities’, said the Psychiatrist. The consultant advised us that Matthew would be admitted as an inpatient during the school summer holidays. We now know that was never

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going to happen. His decisions, actions and lack of action had catastrophic consequences for Matthew. He was 15 then and we were told the best place was a specialist unit at St Andrews. We looked at the website and we were impressed. We did not know he would have to be sectioned to go to St Andrews, nor that it was a hell hole. But we were in crisis at home. My husband (Robin) gave up work to help; my dad came over so we could be 2 to 1. Still we got no support. St Andrews would not assess him at his school; they said he had to come home. That should have been a red flag because it disrupted his routine. I collected him from school. He was distressed and attacked me when I was driving along the M23. He loved school and I had taken him away. He’d so missed school over the summer. That night we called the police. We could not calm him. The police were brilliant. St Andrews assessment team arrived. Their first sight of him, he was in cuffs. But they said ‘yes we will take him’. However, no support was offered. Looking back alarm bells should have been ringing. We’d had NO help. Matthew was taken to A and E, where he was sectioned. However, St Andrews did not have a bed ready; they had to discharge someone first. No one was honest with us about what that meant. So he was sent to Cygnet at Woking, since closed by CQC, maybe one or two days they said. It turned into 6 months. He had no assessment, no treatment and his section was extended. When he finally got to St Andrews he was secluded; he was prone restrained routinely by 6 people to administer anti-psychotics. His catatonia was misinterpreted as demand avoidance. He thought he was in prison. And he was. Worse than prison because he was starved and there was no end to his sentence. The consultant he was under was a specialist in substance abuse, not autism. He was not able to eat his food so they just took it away, so he lost a third of his bodyweight in months. We saw him once a week. He was unkempt. He had poo in his shoes, I used wet wipes to clean him, I cut his hair. He was left with Vitamin D deficiency because he never left the ward. No one listened to our concerns about weight loss. I had to bring food in. And then we had to leave him. A parent’s worst nightmare.

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After discharge Matthew repeated to us what they had said to him. ‘You are going to your room. I don’t want to deal with you.’ Getting Out and a Better Life I wanted to bust him out of there and we tried for 6 months. Our MP Helen Hayes was fantastic. She came to a meeting with us and wrote a complaint. She put pressure on the National Health Service Executive. Meanwhile we went to the media and took part in Channel 4’s Under Lock and Key documentary. Other families contacted us to tell their stories. ‘Conduct disorder’ and ‘demand avoidance’ were St Andrews’ diagnoses. We demanded a second opinion. This was that he needed to be in a residential setting with a structured predictable day. We’d found out about Alderwood, and they had a place. They have been fantastic for Matthew. Within months he had recovered from catatonia, he was living a fantastic life, he was not on any medication, he was paddle boarding, he learnt to canoe initially in a swimming pool and then in open water. He had a voluntary role at Northampton Football Club, setting up activities for kids who came to the game. He was running a tuck shop once a week, he was having animal therapy with horses and dogs, and he would come home for visits. They took him to Anfield, Liverpool FC’s ground, and that set us off visiting all the grounds in the country, from Yeovil Town to Accrington Stanley and back again. Now another hurdle. He lives with 5 others. He can’t do his activities because since Covid he has become nocturnal. He needs to be physically active at night. So he needs his own space. We want shared ownership so he cannot be evicted. And so the fight goes on. Top Tips • Don’t do it alone. Get help from charities and speak with other families. • Become familiar with the law—so you know what could and should happen. • Trust your instincts. If you think something isn’t right—most likely it isn’t. • Try to take care of yourself too—so you can be resilient.

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4.5 Matthew’s Magical Tour One of Matthew’s hobbies is visiting football grounds. He has written about his hobby, and we have included an extract so that his voice is here too. You can read the whole article in Community Living Vol. 32. Issue 1, 2018, p. 18., where the spelling and grammar are correct. Hi im matthew garnett im 17 I have autism and I like football im liverpools best fan ever a like them the most my favorite player is torres and I hate arsesl there rubbish they always lose and I know all the teams I like lots and I need to see where they are so I got a msp that shows where they are im going round the country to see all of them I seen 49 so fr I also go to wales to see Cardiff and swanseas one and I will go to it in summer and then I need to see all the ones in Scotland and the wales ones that play in wales and Ireland and America Australia and the all countries in the world

4.6 Aiming to Educate the Broader Community Lisa Acheson emigrated to Ireland with her parents from South Africa in her early 20s. Here she reflects on her experience of segregated education and the challenges that lie ahead as people with disability break into the mainstream. She experienced bullying and shared the varying responses she got from those in roles that should ensure her right to safety and protection as she journeys through education. My name is Lisa Acheson, aged 32. I lived in South Africa for 20 years before I left for Ireland. I have experienced JR primary, SR primary and normal high school in South Africa. I don’t really remember so much in primary but I can remember nap time in the school room. There were 10 of us in the class aged from two to four years. They were mainly white children in the class, though in later years it was about half and half. Children with different disabilities examples physical, sensory  and learning disabilities and children with walking frames.

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The Brown school is preprimary to mid high school I was there up to ninth-grade about 18 years of age. There were mixed abilities in the school. At the Brown school classes I was happy to a point but there was bullying and name calling like ‘stupid, mute’ which didn’t help. In primary, a teacher wanted me to go to special-needs class and my mum wasn’t happy about it. I went to Pretoria University to be seen and discovered that I have Aphasia and Cerebrally as well. I was approved for a MACAW (an assisted speech device) which costed over R1000 (€500). I wasn’t very comfortable not having my own voice. I can remember at primary school the bad and good sides of it. For example, I was a prefect and I needed to see that every student was behaving in line. It was a good experience. I also learnt about how people live and cope with small things in Lesotho by going on school trips there with my school, The Browns. One teacher was brilliant. He understood what I was not doing right as I had been using short form of sign language. He gave me assignments to improve my grammar and I am thankful he did that. I noticed my grammar improved. But my favourite class was technology because we made our own DIY pulleys. I like to make things with my hands. With two fellow students we were put in a team to do some work. Because I was able to do the work the other two ran off and left me to it. Two other boys put a pin up through my chair to make me yell but I didn’t give them the satisfaction. Yes, I was bullied at both Browns and Open Air schools but through it, I found poetry in it was a way to cope when it felt like no one cared to listen because some teachers weren’t nice and some pupils as well. A boy hit me one time. He was angry for some reason. We both went to see the headmaster because I had hit him back. A prefect saw everything. The headmaster said well done for sticking up for myself! I was surprised I thought I’d be in trouble. Although in Open Air I was compared with a fellow classmate as an able pupil by a teacher, it showed in my grades that I wasn’t happy and lacked self-confidence. Looking back at it, a quote comes to mind … ‘if a student’s grades drop in the classroom, it would mean something is happening at home’ but in this case it was at school.

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There weren’t coping skills groups in both schools and I wasn’t coping well with exams even though some support was available. Looking back, I realise the mock and real exam questions were very different from each other In Ireland, I have experienced different disability services, for example National Learning Network and Brothers of Charity and a change of culture. It was culture shock living here. I became very unsettled within myself and everything else, in my bubble. In South Africa at the time, there wasn’t inclusive education for different disabilities. Aphasia was very rare years ago at both schools I went to in South Africa. In Ireland, no doctor had heard of Aphasia. It’s difficult to find a good communication tool to communicate with teachers, family, support staff and medical care professionals. There is still a gap in inclusive education. In my experience all my free and paid education experiences have been in segregated situations. Most recently I have experienced education with people without disabilities. I feel we have something to offer each other from different perspectives. At Wellness Recovery Action Plan mental health course, I was told that I brought a huge insight using my assisted technology to speak to the class. As a result, I’m using it more. This is an example of a person with a disability being encouraged to be involved and value more what they have to say. Although education might lead to work at the local employability support organisation, I was told that as a non-speaker they would not be able to find work for me. It made me feel discriminated against. I know a young woman with autism who has a podcast using assistive technology, who is also non-verbal too. I know it’s possible to make money as a person who is non-verbal. She does interviews in her podcast. Myself I am doing some paid training and interviewing work with my support organisation. My mental health workshop education, my medication and my psychology support have built me up and I have now developed the confidence to apply for and become a board member of the learning disability support organisation Inclusion Ireland on their disability subcommittee. We are aiming for someone with disabilities to be on the boards of every organisation providing service support to people.

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I can see myself being part of a team that provides education for people with disabilities and also in the broader community raising awareness about the potential people with disability have. Conclusion Whilst very different, these stories evidence how people with a learning disability can face a range of challenges to their safety and protection both in the services that should be there to protect them and in mainstream community life. It can be a struggle to achieve this right for many people and without support and advocacy in place, it can mean that people’s ability to have an independent life can be compromised. These stories of resilience and a creative response to producing resources show how people and their allies have and are enabling themselves and others to enjoy their right to a safe life, wherever they live. It is, however, a constant battle.

References ARC. (2012). Safety Net Project. Retrieved February 28, 2012, from http://www. arcsafety.net/. Beadle-Brown, J., Richardson, L., Guest, C., Malovic, A., Bradshaw, J., & Himmerich, J. (2014). Living in fear: Better outcomes for people with learning disabilities and autism. Tizard Centre, University of Kent. Bubb, S. (2014). Winterbourne view – Time for change (p. 46). NHS England, Transforming Care and Commissioning Steering Group. Department of Health. (2001). Valuing people: A new strategy for learning disability for the 21st century. The Stationery Office. Department of Health. (2009). Valuing people now: A new three- year strategy for people with learning disabilities. Executive summary. London. Doherty, G. (2020). Prejudice, friendship and the abuse of disabled people: An exploration into the concept of exploitative familiarity (‘mate crime’). Disability & Society, 35(9), 1457–1482. Equality and Human Rights Commission. (2011). Hidden in plain sight; Inquiry into disability related harassment (p.  267). Equality and Human Rights Commission.

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Inclusion North and Coast 2 Coast. (2008). Learning disability Hate Crime; Good practice guidance for crime and disorder reduction partnerships and learning disability partnerships. King’s Fund Centre. (1980). An ordinary life: Comprehensive locally based services for mentally handicapped people. King’s Fund. Mencap. (1999). Living in fear. Mencap. Mooney, F., Rafique, N., & Tilly, L. (2019). Getting involved in the community—What stops us? Findings from an inclusive research project. British Journal of Learning Disabilities, 47(4), 241–246. O’Brien, J. (1992). Developing high quality services for people with developmental disabilities. In V. J. Bradley and H. A. Bersani (Ed.), Quality assurance for individuals with developmental disabilities. Paul H. Brooks. Scottish Executive. (2000). The same as you? A review of services for people with learning disabilities. Scottish Executive. Welsh Government. (2018). Learning disability improving lives programme. Williams, C. (1995). Invisible victims; Crime and abuse against people with learning difficulties. Joseph Rowntree Foundation and Jessica Kingsley Publishers. Wolfensberger, W. (1972). The principle of normalization in human services. National Institute of Mental Retardation. Wolfensberger, W. (1989). Human service policies: The rhetoric versus reality. In L. Barton (Ed.), Disability and dependency (pp. 23–41). Falmer Press.

5 Independent Living Lindsey Allen

This chapter is written by Kate Brackley and Lindsey Allen, who work at BILD. Lindsey wrote the introduction and Kate interviewed people from Speak Easy Now about their experiences of independent living. This is followed by stories about the challenges experienced by Chrissie and Nazia from Building Bridges. The chapter relates to Articles 9, 19, 21 and 22 of the UNCRPD.

Article 9—Equal access to the physical environment, transportation, information and communications. Article 19—Right to live and participate in the community. Article 21—Freedom of expression and opinion, and equal access to information. Article 22—Respect for privacy regardless of place of residence or living arrangements. L. Allen (*) British Institute of Learning Disabilities (BILD), Birmingham, UK e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2023 L. Tilly, J. Walmsley (eds.), Rights in Practice for People with a Learning Disability, https://doi.org/10.1007/978-981-99-5563-3_5

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The Right to Live Independently and be Included in the Community Introduction Article 19 of the UN Convention on the Rights of Persons with Disabilities states the right for people to live independently and be included in the community. This article is of particular significance for people with learning disabilities in the UK who for many years were made to live away from family and friends in institutions and, later, in residential homes. Whilst residential care was a step forward from the old institutions, it still left most people lacking in independence and community inclusion (Towell, 2022). It wasn’t until the 2000s and the revolutionary ‘Valuing People’ White Paper that people with learning disabilities were given the opportunity to live truly independently with support in homes of their own choosing, with genuine choice and control over their individual circumstances (Department of Health, 2001, 2009). This shift was known as personalisation—with services led by what people chose—or that was the intention. The move towards personalisation brought opportunities for people to choose what support they receive and to employ their own personal assistants using personalised budgets or direct payments. Whilst developments in the twenty-first century in the UK increased the opportunities for people with learning disabilities to live independently, the stories we will hear from the contributors to this chapter show that there are challenges to ensure that this right is upheld. Andrew’s story shows reliance on family for support, whilst Ray’s story shows what happens when family are not able to provide support, and the challenges this can present. ‘Natural support’, support from family and friends, is important to ensure social inclusion. Lack of social inclusion can prevent the development of friendships and relationships that provide natural supports to people, so there is a vicious circle (Duggan & Linehan, 2013). People need a realistic amount of support to make connections, develop friendships and be included (Bond & Hurst, 2010). Andrew Power and colleagues at Southampton University refer to people ‘self-building’ their lives, with varying degrees of success, and argue that

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most people need sensible building blocks like information, brokerage and access to self-advocacy groups (Power et al., 2020). When we talk about ‘natural support’ we generally think of friends, family and neighbours. Yet the stories told here show that community organisations, which do not always have a formal role in people’s lives, provide a touchstone and raft of informal support to those living independently. Duggan and Linehan (2013) point to a lack of data regarding natural supports. Informal support which relies on small community organisations remains unstable and at risk from changed government and philanthropic funding priorities and wider societal pressures. There is insufficient recognition of the value of these ‘natural supports’. Whereas government initiatives have sought to recognise the role of unpaid carers (Care Act, 2014; Social Care White Paper, 2021), support to them is inadequate. While self-advocacy, user-led and other community organisations are left to fend for themselves (Rouse et al., 2022) Funding and finances are at the heart of living independently for many people with learning disabilities. The pressure of living on government benefits and difficulties in finding employment mean many people either are reliant on family support or must make compromises in their living environment (e.g., sharing spaces, living in places that are inaccessible or living a long distance from family and friends). People often have to make difficult choices in order to live independently; unable to afford privileges that others might take for granted as a reasonable quality of life (Conder & Mirfin-Veitch, 2020). Kate’s story shows the importance for her of Direct Payments to employ her own support and control her own life. Think Local Act Personal (TLAP) produced a report into the effectiveness of Direct Payments and point to the importance of clear and useful advice from services on how to manage and use a Direct Payment (TLAP April 22). They suggest that support from individuals already using a direct payment budget effectively can be one of the most powerful tools to support people to use their budgets well. Whilst the hard won battles for greater independence and control of personal budgets have advanced the cause for people with learning disabilities, there are also concerns that support is waning and with this a decrease in funding (Slasberg & Beresford, 2020).

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Some of the stories in this chapter highlight the ways in which they have had to take risks and make choices that go against their families and supporters. Both Kate and Morgan talk of needing to assert their independence to achieve a quality of life they are happy with. Being prevented from taking risks has been seen as a major barrier to independent living (Morris, 2004), particularly in the attitudes of social workers and decision-makers who may view the risks associated with living independently as outweighing the wishes of the individual. For people to be able to live independently good quality housing options are vital. Government policy (Department of Health and Social Care, 2021) is that improvements are needed in the availability of appropriate housing to suit people’s lives. Often assumptions are made about what type of housing qualifies as ‘independent’ living. Our stories show different ways of living independently. For people to live in homes of their choosing, a range of different options need to be open to people so that they can make decisions about their own lives. However, finding good quality and affordable housing is still a challenge for many, as it is for non-disabled citizens (Mencap, 2012; Department of Health and Social Care, 2021, 2022). What is clear from the stories we hear in this chapter is the richness that comes from enabling people with learning disabilities to take steps to greater independence and involvement in their communities. Whilst there are significant barriers in terms of attitudes, availability of housing and resourcing, the right to be independent must be protected. If 70% of people with learning disabilities living with family want a greater degree of independence (Mencap, 2012), then there is still more that needs to be done to support people with learning disabilities to be able to live, learn and thrive independently.

5.1 Kate’s Story My name is Kate Brackley and I work for BILD as a Learning Disability Advisor. I have a learning disability and I live on my own, I have a support worker that helps me to make my own choices and decisions to help me lead a happy life living independently.

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Being independent has really changed my life lots. As my parents are at an older age, I felt that I wanted to make my decision to take the next step in being independent and having my own life. My mum at first was shocked about my choice to do this, but after a while she supported me to find a suitable home of my own where I can be happy. Since then, I have come on leaps and bounds. Having that initial support to help really showed me that no matter what barriers you face you can conquer anything if you put your mind to it! Independent Living relates to Article 19. This article is about being included in the community and having the choice to live independently, making our own choices and decisions so we can live a happier life. It is a basic human right to have the option of being independent and being able to live as we choose; this is really important as it means we can be accepted in today’s society and to be included in our communities of where we live. A human right is a law and it’s the same for everyone; we all have the same rights. My rights mean that I have confidence and know I can speak up about what I am allowed to have and be. I am proud of this, and I like to speak up about learning disabilities and the issues people like me face. Simon Duffy (2006) says that the seven keys to citizenship are: • • • • • • •

Love Freedom Money Home Help Life Purpose

These are all the things that I need to have a proper life and I do have them because I love my life and I will continue to do so. I have my boyfriend, my family and my friends. I am free to do anything that I want to do, like go down the pub or perform in my local theatre. I work and I have a salary and I love being in control of my money. I have my own flat and a mortgage. I have a lovely support worker who works for me, who is a darling! I am very proud to be active and I do a lot of volunteering in

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my community; I have a lot of friends in my local area that know me very well. I am looking forward to going to Australia next year to see my brother, sister in law and nephew. In the future I want to write my own autobiography and I also want to set up an art business with my friend. I want to progress my career at BILD and become a manager as a next step; I’m working towards this at the minute. What Is Independent Living? Living independently means that people with learning disabilities can live on their own, but they also will need support. This is vital to them to be able to carry out duties in the house and the upkeep of living their own life. Having support means that there is someone there helping with things like reading and understanding mail or money and things that enable people to live and to be included in the local community. People with learning disabilities need to be included in the heart of their community. Many people would like a network of other people that they can find good friendships with, by going out to groups. This may lead to finding a potential girlfriend/boyfriend and by this their confidence could grow by a mile! Being independent is a basic human right and for people with learning disabilities they would like to be confident and to live a happier life on their own. But to live independently is a massive step and for this to happen for people with learning disabilities, it is vital that they have a good support network. It is important to look at someone’s circle of support: in the middle of the circle is the person, and each circle represents different people who are close to them, so maybe your family first, then friends and neighbours, people who are paid to help like doctor, dentist or social worker. From this you can create a support plan; it describes what support you need to live day to day and who will provide the support. Different Types of Independent Living There are many different types of places to live independently out there. It is up to people with learning disabilities to make their own choices and

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decisions. They might need support to help them grow their confidence and to build up the skills so they can learn to be independent. They will need support to help them to make sure whatever place they choose is a suitable place. Sometimes people call living independently ‘supported living’. This is the same thing where people live in their own home which they own or rent and then they have support that comes in separately to help them. Living independently doesn’t have to mean living on your own; it can be a mixture of different situations. Some people live with a family that isn’t their own. Some people have their own flat, and all their neighbours have learning disabilities; there are some shared spaces where people can interact with their neighbours and do activities. Some people have a home where they share the whole house or flat; they have their own room and live as flat mates. Some people like me buy or rent a place out in the community and get on with their lives as independently as they can (Fig. 5.1).

Fig. 5.1  Rachel Barrett (Garage Art Group, Worcestershire)

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History of People with Learning Disabilities In history people with learning disabilities were not part of society; instead people used to be locked away in institutions and long-stay hospitals and monitored around the clock. They were not nice places to be in, as people were often poorly treated. After this, they tried to move people out of the hospitals, and they moved them into group homes (residential care). Group homes are where you share a home with other people; you have your own room, but you don’t have any say over who supports you and it’s not your own place. When Valuing People started, people with learning disabilities started to have a voice. They wanted to do things like living independently, having their own homes and being included in their local community. They also wanted a say over who supported them. It is very important to me to choose who supports me, as I pay them and I don’t want someone I don’t like. The self-advocacy movement is about learning how to speak up for yourselves and it helps people with learning disabilities have more control over their lives. It gives people the chance to make their own choices and decisions for themselves. Yes, they will need support to guide and advise them, but they can be in full control over their own lives. Now people with learning disabilities are included in society but some people are very shy and we should encourage them to have the confidence. As history has shown people with learning disabilities did not have basic human rights met and independent living was not something they could hope for. But now there are changes and people with learning disabilities are living independently and this does show that we would like to be independent and live in a society like everybody else. There are still challenges and barriers for some people as we will see. What Are the Challenges and the Barriers? Here are some of my thoughts about the barriers we face: The lack of information we can understand, like having things in easy read or using pictures to communicate. People can get confused and worried about where to go to find the right information and how they can start the process of finding somewhere to live independently.

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Finding the right support to help people with learning disabilities to be able to make their own choices and decisions about living independently. Support can be people like family, friends, support workers and people that they turn to for emotional support. I think that people’s attitudes can be a barrier as this can be a lack of awareness and understanding. People don’t always understand how to ‘let go’ properly; for example my mum when I first decided to move out was really worried about how I would cope. But I wanted to take the risk and really show her that I could cope, as someone with a learning disability. Sometimes people can cause hate towards people with disabilities and this is a crime; all people with learning disabilities want is to live in communities and feel safe. Sometimes people can be too worried to live in the community because they are scared. It is harder for people with learning disabilities to live on their own away from their family, as there’s things like how to pay your rent and rent is expensive. Lots of people have low incomes, some people earn lower wages and others have to have a top up with benefits. Getting benefit payments can be tricky and sometimes they can be stopped for no reason (which happened to me). How Can People Overcome These Challenges and the Barriers? For people to overcome the challenges and the barriers is to be able to have support in place. We need to be able to get information that is in an easy accessible way for people to understand about living independently. Moving house is very stressful and it can get a lot of people worried and their anxiety can have a significant part to play. People need to learn new skills; the basics of living independently for example cooking, cleaning and learning what jobs that is essential to live independently. They could be learning these in their family home and in college, like I did. Support for this is vital as people with learning disabilities will need to have the help to know what to do with benefits, their financial paperwork and what to do with important information that affects them. Another way of breaking down the barrier is for people to have the right training: for example the Oliver McGowan Mandatory Training.

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This would mean that staff in the community like doctors, or even benefits staff have the right approach and the best awareness so everyone can do something more positive in their jobs within their organisations. How Does Living Independently Help People? Living independently helps people with learning disabilities to gain confidence. They gain valuable life skills to be able to live in their own communities. We can be included as well as people without disabilities; we can show how much talent we have and we need the chance to show it off! We want to be able to have the chance to really succeed in life. People without disabilities do see people with a learning disability in a different way when they live independently. Sometimes they get put off that people with learning disabilities are not the same as them and they feel a bit embarrassed. Now I live in the same block of flats as people they treat me the same as others. Cause I’m more approachable I’ve made friends. I recently made friends with the owners of my local pub. This helps people with a disability to be accepted more in the community as this is so important to us. Ok we will need support but we are people too and we want to lead our lives fully the same as everybody else. We are just as special as people without a disability. Telling Stories I have been speaking to people about their own personal stories about living independently and how they did overcome the challenges and the barriers to live independently.

5.2 My Story I was living with my parents for a long time; after a while I decided to approach my mum that I would like to move out from her house. It did take some time for mum to realise that I wanted to be able to do

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something myself. With the help of my mum I looked into renting and me and mum approached Our Way based in Kidderminster. I joined Both Ways the housing scheme and they matched me up with someone else that would like to move out of their family, so both of us found a suitable home through an estate agent. Unfortunately, that didn’t work out the way it was supposed to be as problems came apparent; I was bullied by my flat mate and I needed to get out. After that I moved out and tried to rent again with another friend of mine; unfortunately that fell through as she found a boyfriend and moved in with him. As I couldn’t pay the rent to the place on my own. I then went back to mum and said that I would like to live completely on my own. I didn’t want to share with anybody else and that it was my own choice and decision to do this. Luckily we knew a family friend who was going to sell up her flat in my hometown. My mum approached her friend and I brought this flat that I am currently living at now after 14 years of my life. I have a mortgage and it is very rare that someone with Down’s Syndrome to be in a position to have a flat with a mortgage and to live independently with a personal assistant. I fought hard to finally live on my own. I am lucky that I have a family that support me to try new things even when they don’t work out. I feel I am leading the way as a prime example for other people who have a learning disability to be able to encourage them to live independently, as this really does change people’s lives so much. My confidence has grown and I have learnt so much from moving out of the family home. I have learnt vital skills and I am still learning now as learning is part of life and I have developed so much over the 16 years of being on my own. I love my life now; I have support from a personal assistant which I pay myself and for me has been a wonderful experience. I have help in preparing and cooking healthy meals according to my diet, help with working out a regular pattern of keeping up the appearance of the flat and dealing with important mail which I do send to my mum. I also have support emotionally as I do struggle with my mental health at times. It is all working really well at the moment (Fig. 5.2).

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Fig. 5.2  Stuart Bullock (Garage Art Group, Worcestershire)

5.3 Morgan’s Story Morgan: I was living with my Mum. We had a major argument with the police getting involved. The police said it wasn’t safe for me to stay so I moved out. I spent one night with one sister and another night with my other sister. I went to the council and they paid for me to spend the night in a hotel. They told me about Nightstop. (Nightstop is an organisation that helps young homeless people facing a night on the streets or sleeping in an unsafe place.)

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My old youth worker was working for Nightstop. He had also been our family support worker. To start with I went from host-to-host for a couple of weeks. I then went to live in a care home in Bromsgrove for 4 months. The place where I live now became available for me in March 2020, just before the Covid lockdown. I finally moved into my new flat in July 2020. Kate: Tell me about where you live. Morgan: My place is supported living. There are 14 flats. Everyone has their own flat. There are staff onsite 24/7. Usually 3 or 4 staff during the day and 1 member of staff overnight. There are 18 full-time support workers. There’s a communal hub where everyone can meet and talk. We can also watch TV together. Kate: What do you like about where you live? Morgan: I like being able to do activities with friends. I am organising a trip to Harry Potter World next year. I need to check if enough support can come with us. I like the fact that I can plan trips and see who else wants to come. Support will come if it is possible. Kate: What don’t you like about where you live? Morgan: Arguments! When there are arguments, staff will sit down and help sort things out, once everyone has cooled off. If there are arguments everyone has their own flats. There are sometimes staffing issues—one-to-ones don’t always happen. Kate: How is life different? What support do you get? Morgan: I have finally got space to live my own life. My mum would question me about who I was with, where I was. I would say I was out with friends but she would call me and tell me I had to come home. I also would like to think I have more choice. Staff do give me good advice, but I get to make my own decisions. Kate: Did you have any barriers to living independently? Morgan: My Mum because she worries about me.

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5.4 Ray’s Story Kate: Hi Ray, thank you for coming along today. I’m going to ask you some questions about living independently. Ray: My bills are up-to-date. I enjoy living by myself. I used to live with Mum until she went into a care home. Our Way helped me quite a lot. Kate: Tell me about where you live. Ray: I live in a quiet area, it’s a nice area. I live in Worcester in a normal council flat through Citizen Housing. I’m getting a new kitchen in December or January. I’ve already chosen the colours. Kate: What do you like about where you live? Ray: Everything! I don’t see my neighbours very often. We keep ourselves to ourselves. It’s a nice area and it’s on a bus route. I can also walk into town. Kate: What support do you have to be independent? Ray: I don’t have support. I get help from Our Way now and again. I have people there and at SpeakEasy N.O.W. I can ask if I get a letter or have a benefits assessment. Kate: How is life different? Ray: It was strange to start off with. I’ve been living on my own now for 18 months so I’m used to it now. I can always ask people if I need any help, for example with letters. Kate: Did you have any barriers to living independently? Ray: I didn’t want supported living. I had looked after my Mum for lots of years, so I felt ok to look after myself. I love it. If I have any problems, I can ask Cat or Sarah. I stood my ground when I was asked if I wanted to live in a supported living service. I spoke up for myself. Our Way helped me get my flat through their Housing Project. They got some funding to help people. Cat helped me with the online housing form. Once my Mum moved, I moved about six weeks later. I didn’t look at the flat before I took it, I had to just take it. Cat helped me with the paperwork. She helped me swap to Universal Credit from Employment Support Allowance I still get PIP.  The hardest bit was waiting for my Mum to get a place in a care home so that I could look at moving.

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5.5 Andrew’s Story Andrew told Kate his story and she wrote it for him. Andrew learned to be independent from his mum and she taught him to do basic things like cooking basic meals, how to use a washing machine, how to shop on a budget and how to pay bills. With the help from a social worker he found a place to live at. Andrew has lived in his current flat ever since 10 years ago and he is happy living there. Andrew likes the place that he lives at because he is close to town for the shops like Sainsbury’s as well as others. He is not very far away from his parents either and it’s close to the park for beautiful walks along the canal as well. It is important that it is close to good transport links like the bus and the train station. Andrew mainly gets support from his mum and if he has any problems then he can speak to his mum. But he is very happy with his minimal support. Andrew thinks that this is important as he can go out and when he sees his friends including his girlfriend. It’s a lot different living independently than in the past when he lived with his parents, and he is very happy with the way things are. Andrew had no barriers as after he moved into his first flat, he had help from a disability support team called North Star Foundation who helped him if he had any problems. With the support of North Star they helped him with anything that he was worried about. Once he had his mum to help him after and they were happy their work was finished, it made him happier getting the support from his mum not just for now but for the future.

5.6 Speak Easy N.O.W. I invited Sarah Wilkinson from Speakeasy N.O.W to speak about organisations like theirs, about their work and how they help people move on to independent living.

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SpeakEasy N.O.W. is a self-advocacy charity for people with learning disabilities. We are based in Worcestershire and work across the county. We also have a Health Checkers’ team working in Herefordshire. SpeakEasy N.O.W. is user-led, with members making up the Management Committee and on the Board of Trustees. Members guide what the charity does and the members and staff help move it forward. SpeakEasy N.O.W. helps people with learning disabilities get their voices heard in various ways, including: • • • •

Health Checkers Project in Worcestershire and Herefordshire People’s Parliament Project Expert Members Group Self-Advocacy Groups

The charity works to support people with learning disabilities to improve services. We want everyone to live the fullest lives they can. We try to make sure that people with lived experience are involved when decisions are being made by the NHS and Worcestershire County Council. We coproduce work with partners and our Experts by Experience sit on the Learning Disability Partnership Board too. A member from SpeakEasy N.O.W. sits on the Learning Disability Board Sub Group called ‘Having a Place to Live’. The group is developing a new contract specification for supported living at the moment. Our member has also visited new supported living services to check them before people move in. As a follow-up, he has suggested going back to cluster flats to do reviews now that people are settled. This would involve chatting to people about their experiences of supported living. This work will be part of a review about Learning Disability flat schemes by Worcestershire County Council. SpeakEasy N.O.W.’s work is mainly about supporting people with learning disabilities to make changes. However, we are lucky that our members often turn to staff members for informal support with issues, including housing. Some of our members have support workers to help them with letters or other post. However, some don’t and we can help with queries about benefits, housing or bills. Recently we’ve helped members when they

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have had letters about claiming their energy rebates. We’ve also helped a member who was worried as they had a text about being in contact with someone with Covid-19. We were able to check the text and reassure them that it was a scam and they were right not to click on any link. This kind of informal support doesn’t take a great deal of time, but it can make a big difference to people who don’t get formal support. It enables people to be independent, even if they don’t have a close relative or support worker they can speak to. Some of the people we work with might find it hard to go to an unknown organisation to get this kind of support. The staff team at SpeakEasy N.O.W. see this informal support as a very important part of our roles.

5.7 Our Way Housing Project I invited Cat from ‘Our Way’ to talk about their housing project. What is the Housing Support Project? Housing support has always been a part of Our Way. Many years ago, the service was called ‘Both Ways’ and had a focus on matching people together so that they could find a house share. Over time the service has changed. There are now more ways for people to live independently—supported accommodation, shared lives, domiciliary care, shared houses or flats. People also now have more choice about how they get their support, through support agencies or their own PA. These days the service is more holistic. This means that it adapts to suit the needs of the person or people it is working with. The support is available to people with learning disabilities and/or autism in Worcestershire. How can the Housing Project help? For example, if someone decides they want to move out of the family home, they might go to see Cat for a chat. Cat will explain the different options that are available. Some people may want to live completely independently, whereas other people may want to try supported living or a shared lives placement.

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Different people have different needs. The housing project will only go as fast as someone wants. Sometimes it takes years for a person to be ready to move into their new home. Everyone is totally different. Why is the Housing Project needed? Finding somewhere to live can be difficult. There are lots of different options and it is hard to know which option might be best for someone. Cat also said that it is a sad fact that when someone with a learning disability has a supporter with them, especially a supporter wearing an ‘official’ badge, they often find that they get a different response from professionals. Cat can also sometimes get to speak to professionals more easily than a member of the public. How does Our Way support people with living independently? Some people that Our Way work with may not be eligible for support under the Care Act. It is very important that they think about how they will cope living independently. They may need help, for example: • learning new skills to become more independent; • getting more confident supporting themselves; • having some kind of formal support. Cat explained that people with learning disabilities and autistic people are already labelled, so they can be worried about taking a risk. If anything goes wrong, they may be worried that people think it’s because they are not capable or because they’ve got learning disabilities. This can make some people feel less confident. Our Way can provide practical support when someone moves into their own home. They have links with an excellent local removals firm who will always help when they can. Our Way has a good relationship with Kidderminster District Youth Trust and can borrow their van or minibus to help with removals too. When people move into a new home there are often costs that need to be paid at the start. Our Way can give people a loan for these costs. They can also help people to set up deposit arrangements with the council, for example. Cat often finds that people will get in touch and they may have some furniture they’d like to donate. This is really helpful as it means that

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people can have something when they move. They can replace these items as they get settled. Can you Tell Us a Success Story? In June the Housing Project helped move a couple into an extra care facility in Evesham. They were able to get their own flat. The Housing Project worked with the council to make this happen. Evesham was a great place for this couple to be as they knew people there, so could have support from people they know. The Housing Project also made sure that there were appointees in place for the couple. These are people who look after their money for them. When Does the Housing Project Stop Giving Support? When the Housing Project moves someone to their new home, Cat often finds that she spends a lot of time with the person to start with. They will phone her often too. Over a period of time, she tends to hear less from the person. She will still check in with them, but they don’t need her help as much. They are starting to become more independent. Our Way can provide informal care and support even once people are living independently. For example, if people get a letter in the post, they can bring it into Our Way and get some support around what to do. Top Tips • Support—this is vital, as some of the things about living independently are stressful. Support might be from a paid supporter, but also family and friends can give a lot of support too. • Get help and advice—citizens advice centres, their local authority, self-­ advocacy or other community groups like Our Way in their local area. • Making things understandable—people with learning disabilities always find information better when it’s written in a way that they can understand. This include things that are in easy read, which help them to break things down into manageable chunks so they know how to approach the subject of living independently. • People need to expect that there might be problems and not give up when things get tricky. • Be ready to take a few risks. Positive risk taking is all about learning from our mistakes and being able to do things as independently as possible. So, we can achieve our goals by doing things on our own, with the support of our families and others to help us learn.

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5.8 Chrissie’s Story About Living on her Own Chrissie is part of Building Bridges and lives in Sandwell. She shares a short story about her achievements and challenges of living independently. About Me I’ve had a learning disability all my life—since I was born. I live in a bungalow with Mini my tabby cat. She gets me up early in the morning. It’s like having an alarm clock! 5 or 6am! I don’t get up till 8 or 9! She wants food and meows at me. She can open the door by swinging on the handle. She learnt by watching me! I have good neighbours and they fed Mini when I went away last summer. I have 4 sisters. On Sundays we all go to my sister Samantha’s for lunch—it’s my one sister and her husband, Samantha and her son and me. We take it in turn to buy the meat and the pudding, like ice cream or apple crumble. But I can’t have things with sugar in as I am diabetic. I like doing crafts and making cards. I like to make my friends cards for Easter, Christmas and birthdays (Fig. 5.3). Things I Find Hard One thing I can’t do myself is the jobcentre and the forms online. I’ve got the job centre calling me again soon. And I get confused with the letters from the council rent team—they say the rent is going up.

Fig. 5.3  Original artwork by Chrissie (Building Bridges)

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And I can’t do shopping online but I can’t lift the heavy bags when I go food shopping. It’s hard for me. So I use my 4-wheeler trolley. It’s got white flowers on it. I get tired, the trolly is my legs. My Talk Talk has gone up from £38 to £44 its too much now. It’s hard managing my money. And some months my phone top up of £15 runs out. I would like to have a support worker again but I can’t get one now.

Chrissie’s Top Tips Are: • More easy read information. • Make the bills easier to understand. • Make more crossings so it is easier and safer to cross the road. • Have an Alexa—it can be an alarm to wake you up and remind you when to take your tablets. • Have a pet to keep you company. • Always make sure you have your phone charged up and keep it by you. • Always lock your front door when you come in.

5.9 Nazia and Being Home Alone Nazia shares a story where due to her family and cultural situation she hasn’t been able to enjoy her right to independent living like so many of her peers. Until last summer. … Read on! I live with my sister, brother-in-law and the children. They all went to Pakistan for the school summer holidays and I didn’t want to go. This time they said I could stay behind and look after the house and so I was independent at home for the first time in my life! I am 40 now and I have never been on my own before as I have always been living with my family. This summer I had 6 weeks on my own. I had lots of fun! And I did what I wanted and went out and met my friends. I had meals in Wetherspoons and I joined them at the snooker hall. I can’t usually do these things as I have to do the school run in term time. I wasn’t scared being in the house on my own. But I felt lonely when I came home and the house was empty, there was no one to have a cup of

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tea with. I can’t cook very well so I just had frozen meals to put in the microwave. Sometimes I had chicken and chips from the takeaway. I missed my sisters’ curries! But it was really nice not having anyone tell me what I had to do! My dream now is to have my own house! But my family said I can’t move out until I am 55. Nazia’s Top Tips • It’s your right to do what you want. • When you have control over your own life you can go where you want. • And you spend your money on what you want! But spend some and save some. • You can eat what you want but eat healthy

Summary As you can see from the research and the stories it does show that people with learning disabilities just want a life and to be given a choice to do something for themselves and to live independently and the feeling of being included in communities the same as everybody else. Organisations like Our Way and Speak Easy NOW are important because they can offer support when it is needed without taking over. Kate Brackley

References Bond, R. J., & Hurst, J. (2010). How adults with learning disabilities view living independently. British Journal of Learning Disabilities, 38(4), 286–292. Conder, J. A., & Mirfin-Veitch, B. F. (2020). “Getting by”: People with learning disability and the financial responsibility of independent living. British Journal of Learning Disabilities, 48(3), 251–257. Department of Health. (2001). Valuing people: A new strategy for learning disability for the 21st century. The Stationery Office. Department of Health. (2009). Valuing people now: A new three-year strategy for people with learning disabilities. Executive Summary.

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Department of Health and Social Care. (2021). People at the heart of care adult social care reform white paper. Department of Health and Social Care. (2022). Building the right support action plan policy paper. Duffy, S. (2006). Keys to citizenship; A guide to getting good support for people with learning disabilities. Paradigm. Duggan, C., & Linehan, C. (2013). The role of ‘natural supports’ in promoting independent living for people with disabilities; a review of existing literature. British Journal of Learning Disabilities, 41(3), 199–207. Mencap. (2012). Housing for people with a learning disability. Morris, J. (2004). Independent living and community care: A disempowering framework. Disability & Society, 19(5), 427–442. Power, A., Nind, M., Hall, E., Coverdale, A., Macpherson, H., Kaley, A., Croydon, A., & Elizabeth. (2020). Self-building our lives: Social care research report. University of Southampton. Rouse, L., Tilley, E., Walmsley, J., & Picken, S. (2022). Funding the gap: An investigation into the funding of self-advocacy groups. The Open University. Slasberg, C., & Beresford, P. (2020). Independent living: The real and present danger. Disability & Society, 35(2), 326–331. The Care Act, 2014 chapter 23 available at https://www.legislation.gov.uk/ ukpga/2014/23/enacted Towell, D. (2022). Towards an ordinary life: Insights from a British story of social transformation, 1980–2001. British Journal of Learning Disabilities, 50(2), 199–207.

6 Health and Wellbeing Rohhss Chapman

This chapter focuses on Article 25, the Right to Healthcare, and early identification and intervention without discrimination. The introduction and main story are by  Rohhss Chapman and Louise Townson  working with Sunderland People First. Rohhss and Lou have been colleagues and friends for thirty years. They have worked together on many inclusive projects and publications associated with rights and self-advocacy. They have wor collaborated with Sunderland People First over the years. Their accounts are followed by three short stories relating to health and using health services by members of CASBA and Building Bridges, both in the West Midlands.

Article 25—Right to health care and early identification and intervention without discrimination.

R. Chapman (*) Independent Consultant, UK e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2023 L. Tilly, J. Walmsley (eds.), Rights in Practice for People with a Learning Disability, https://doi.org/10.1007/978-981-99-5563-3_6

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6.1 The Right to Healthcare (Article 25 of the UNCRPD) Health issues are mentioned in Article 25 of the United Nations Convention on the Rights of Disabled People (2006). The article sets out that disabled people have the same Right to Healthcare as other people. It also says that information should be made available for people to be easily understood. This is clearly difficult in the light of enduring (lasting) health inequalities faced by people with learning disabilities and autistic people. The Article sets out that work needs to be done to make sure everyone gets the right help they need. It states that all doctors should get training around disability to inform and develop their practice (work). Sunderland People First are involved in many training projects. Article 9 of the Convention talks about Accessibility in all areas of service. Article 21 of the Convention also speaks about Freedom of Expression and Opinion (being able to say what you want and need to say), and Access to Information. Sunderland People First have developed projects around accessibility in their work with a company called Media Savvy. They have worked together to find ways of dealing with ‘digital poverty’ (where people don’t have access to technology, equipment and training). Technology is now really important in helping the health and wellbeing of people they work with. Sunderland People First’s health work cuts across other Articles in the Convention. For example, Article 10, The Right To Life. Some points here link to the early deaths of people with learning disabilities that could have been avoided. There is also discrimination in the use of ‘Do Not Attempt Cardiopulmonary Resuscitation’ (DNACPR) orders, where people may be denied help to keep supporting their life in emergencies, noted later. Sunderland also became involved in campaigning around the need for Covid vaccinations for people with learning disabilities. This priority was felt to be ignored in the early stages of Covid-19. Because of this unfairness, the ‘Beyond Urgent’ campaign was developed to give a voice to people. There was also a project developed across the region

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called ‘Be Cancer Aware’. This was run by peer trainers to help educate people about cancer risks and how to prevent cancer. Sunderland People First’s work also touches on the lives of people with learning disabilities and autistic people who have to live in secure hospitals called Assessment and Treatment Units. Projects are designed to help with people’s mental health and to make sure people don’t have to stay in hospital longer than they should. At a more general level Sunderland’s work links to Article 8: Awareness Raising. This is about ‘promoting awareness of the capabilities and contributions of persons with disabilities’ and ‘promoting recognition of the skills, merits and abilities of persons with disabilities’. In other words, the Convention sets out that people should be seen and appreciated in a positive light. It is about recognising the things that people can do and making sure the wider public know about it. These values are at the heart of Sunderland Peoples First’s work and run through each of their projects. Linking Sunderland’s work into where Sunderland is in the North of England and what the social issues are in that area is very important. Sunderland and the North East have a greater task in fighting inequalities than many other places in England and the UK. Sunderland is in the Northeast of England. This area has the second lowest employment rate in the UK after Northern Ireland (ONS, 2023a, 2023b). It also has the lowest healthy life expectancy rate (how old people live in a healthy way) in the UK. After 2019, the Conservative Government of the UK developed a range of policies aimed at giving more wealth, investment and devolved power to regions (where regions get to make decisions about their own area rather than decisions being made by Central Government). The point of this was to make life more equal across the whole of the UK. The Government called it the ‘Levelling Up’ agenda (Gov UK, 2021a, 2021b). Recent research from Northumberland University showed that local councils faced a 31% cut in staffing since these new policies. This resulted in there being a lack of support to even apply for government funding to bring money into the area (Forbes et  al., 2022). This research talked about the problems faced by Sunderland Council in applying for the funding. It said:

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The increasing inequity between the North-East and the rest of the UK is widening. The region is in danger of slipping further behind, as the economic and social positions continue to deteriorate at alarming rates. (Forbes et al., 2022:35)

Health Inequalities for People with Learning Disabilities and Autistic People There is an unfair spread of health and wealth in the local area for everyone in the population compared to other places in the UK. However, this is even greater for people with learning disabilities and autistic people. The LeDeR (Learning from Deaths Review) was introduced in 2015 (Heslop et al., 2018). It was in response to campaigns by organisations such as Mencap about the likelihood of people with learning disabilities suffering avoidable (the person could have been saved) and premature (early) deaths. The 2021 LeDeR report said that people with learning disabilities died 22 years younger than the general population (King’s College, 2021). It was found that half of the people with learning difficulties in that past year died an avoidable death compared to less than a quarter of the general population. The idea of the LeDeR review is to learn from these premature deaths and to use this knowledge to improve services so that people can ‘stop dying too young’. This is the name of the local group spoken about in the chapter. They work to bring the health inequalities to the notice of the public from people’s own projects and voices. Health issues that tend to affect people with learning disabilities have been found to include Cancer, Kidney Disease, Respiratory (lungs) problems, Epilepsy, Sepsis (blood poisoning) and Covid-19. The work of Sunderland People First around ‘Be Cancer Aware’ is an example of LeDeR work being transformed into peer projects. Covid had hit harder for people with learning disabilities. A report from Public Health England showed that people with learning disabilities died from Covid at 6.3 times the rate of the general population, from 21 March to 5 June. (Gov UK, 2021a)

As mentioned earlier in regard of the Convention, it also came to light that there was a lack of information and access to Covid vaccinations.

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This led to the ‘Beyond Urgent Campaign’, which set out to make Covid vaccinations a priority for people with learning disabilities and autistic people. Likewise, it was also noticed there was a misuse of Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) orders. Sometimes, frailty or learning disabilities were, inappropriately, given as a rationale for a DNACPR decision. … The decision-making process for DNACPR decisions had not adhered to the Mental Capacity Act (MCA), with no references to capacity assessments having been carried out in a number of cases. (Community Care, 2021)

The Covid-19 pandemic response is highlighted in the work Sunderland People First discuss. They mention how people with learning disabilities and autistic people found the flood of news and information at the start of the lockdown period both frightening and difficult to understand. Sunderland People First talk through a range of projects that set out to help people access and understand the information they needed. This was through paying attention to accessibility, the use of Zoom meetings and other ways of meeting together. They work with a company called ‘Media Savvy’ which helped people gain skills to get online in the first place. Getting everyone included in using digital equipment like tablets, phones and laptops was important. Even though organisations were offering to donate the equipment, it became clear that support was required to help people learn how to use it. This support needed to be ongoing for all the time people could not meet face to face. In using technology other issues arose such as keeping safe online. Through the chapter, Sunderland People First explain how they approached this work. To summarise, Sunderland People First are not only dealing with the inequalities facing citizens with learning disabilities and autistic people across the country. They are also dealing with a range of additional social inequalities because of where their work is based. This is important to understand. This ‘double challenge’ cuts across the range of campaigning and training that Sunderland offer in their health projects and campaigns, accessibility and promoting voice.

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How the Chapter Was Written The chapter was discussed by members of Sunderland People First as listed in the authorship. They agreed the topic of what was to be written about as explained below and organised Zoom calls around it. Some individuals expressed their own stories as noted in the chapter and others had more generalised discussion. People were assisted where required by the supporters (also listed). Rohhss and Louise had been to an editorial meeting in Birmingham where the shape of the book and the role of the academic authors were set out. They were matched with Sunderland because of their pre-existing relationship. After the first draft of the content was written up by Andy, the whole group got together with Rohhss and Louise to discuss how the chapter and introduction would shape up together. Rohhss and Louise discussed their introduction in face-to-face meetings. Rohhss wrote with Louise then adding comments for change. The introduction was sent to Sunderland to be read over and discussed by the group. The authorship group then met together again on Zoom to refine the whole chapter in detail. Many points were made around accessibility which resulted in further editing until the chapter was finally agreed and sent onto the editing team. In the content below, the main writer Andy refers to ‘we’, meaning the people from Sunderland People First listed in the authorship of the chapter. It has been important to be clear about the process and ‘who does what’. It is also important in the culture of People First to talk about ‘we’ rather than ‘I’. The support role in self-advocacy groups is complex. It is important for the group to concentrate on the collective.

6.2 The Work of Sunderland People First Sunderland People First is a self-advocacy group based in the North East of England. We support people with a learning disability and autistic people to lead full lives as citizens and all our work is aimed at supporting our community. We do this through consultation, co-production, promoting national and local campaigns and giving people a collective voice.

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We are also passionate about working with other self-advocacy groups across the country to support inclusion. Self-advocates from our team wanted to talk about how we support the health and wellbeing of people with a learning disability using personal stories and examples of projects that we have led on. Throughout this chapter we reference reports and studies that show how people with a learning disability have major health inequalities which can lead to early and preventable deaths. We started thinking about what we wanted to write in August 2022. Our early discussions were very much focused on the Covid pandemic and how difficult lockdown had been for individuals and families. One person simply said, ‘Coronavirus changed our lives forever’. In many ways, the Coronavirus pandemic made existing health inequalities worse for people with a learning disability and highlighted how we value people’s lives in decisions taken during this time. We believe that the stories of team members ‘shine a light’ on the strength and creativity of self-advocacy groups in supporting local communities. In September 2022, Sunderland People First were at a point where we are close to the full community engagement that was a normality for all of us before 2020. We can reflect on what we have achieved together as a team during these difficult and frightening times. How Diary Entries Tell a Story The week commencing 9 March 2020 was a regular, busy week for our team: • Monday 9—we delivered ‘Protect Yourself and Others’ safeguarding training to people with a learning disability. • Tuesday 10—we delivered Learning Disability Awareness training to social care staff. • Wednesday 11—we ran a pilot Domestic Abuse Training course for people with a learning disability. • Thursday 12—autism consultation with a student from the University of Durham. • Friday 13—we delivered Hate and Mate Crime Awareness with colleagues from Northumbria Police to people with a learning disability.

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One week later, all meetings and events had been cancelled and we were all working from home. Our team set up a WhatsApp group called ‘You’re not alone’; two weeks later we were supporting self-advocates to use something called ‘Zoom’. Self-advocate: ‘It all felt strange and very complicated talking to each other on the computer. It took a lot of getting used to.’

6.3 Keeping People Connected (‘You’re on mute!’) Coronavirus was new to everyone. We hope that we will never have to experience anything like this in our own or our children’s lifetimes again. Due to Covid restrictions (things that could not be done), self-­advocacy groups and other members of the voluntary and community sector had to close their offices and adapt to working in an entirely different way. Until April 2020 our offices were based in Leechmere Independent Living Centre. The centre was also home for a social care provider and various teams including occupational therapy, wheelchair services and community nursing outreach teams. In April we were asked to move our offices to allow front-line services to use our old offices and be able to socially distance. Our CEO spent an entire week organising storage for years of work whilst trying to find new offices for us to move to. This was an incredibly difficult and emotional time for every member of our team. Almost overnight we went from meeting in our office, planning and delivering community projects, to connecting up in an entirely new virtual world. Self-advocate: ‘I felt like a prisoner in my own home. It was horrible.’ At the very beginning of the pandemic, we all struggled to make sense of the news reports and government guidance. Sometimes these seemed to say very different things. This created a sense of anxiety for everyone as there was no clear message around what people could and couldn’t do. Self-advocacy groups and organisations like Photosymbols and Inclusion North responded to the lack of accessible information provided

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by the Government by creating daily and weekly easy-read bulletins. This information was important in enabling people with a learning disability and families to understand the signs and symptoms of coronavirus and the rules about social distancing, use of face masks and the Covid vaccination programme. Self-advocates described how stressful life was like in the early days of the pandemic. One person said, ‘[I]t brought out the best and the worst in people’. Whilst everyone will remember memes about people stockpiling toilet paper and pasta, the personal experiences that self-advocates experienced and shared were frightening. Self-advocate: ‘I found it difficult to understand social distancing and I remember being so panicked about doing food shopping as other shoppers could be so aggressive. I stopped going out.’ Our team had to take on an entirely new way of working which involved moving to virtual work whilst providing essential offline support. Although some of our members were familiar with using smartphones, most people had little or no previous experience of online meetings and had to learn new skills around using new technology. We worked together with a local organisation called Media Savvy to support people to get online, learn new digital skills and provide a range of accessible training programmes which were important and for many people provided a real lifeline of opportunity and hope. Media Savvy also secured funding to purchase new devices and refurbished donated devices which were given to people with a learning disability within our local community. The team supported people with a learning disability to get online by providing equipment, mentorship and support and were always on the other end of the phone to offer advice. This project played a major role in supporting people’s mental health and wellbeing throughout the pandemic by enabling people to stay socially connected. One person said that connecting with other people online ‘[g]ave me something to look forward to’. The Staying Connected and training sessions provided opportunities to stay busy and mentally active, giving people a sense of purpose, structure and routine. This also allowed members of the community to discuss the often-confusing messages from Government regarding changes throughout the pandemic.

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At the beginning of lockdown Sunderland People First worked together on a partnership ‘Keeping People Connected project’. The Keeping People Connected project was developed in response to the Coronavirus emergency, Government lockdown and instructions, where people were required to stay at home with no social face-to-face opportunities outside of the household and limited support networks. As such people were at great risk of loneliness, uncertainty, risky behaviour (including personal management of coronavirus) and isolation. In Sunderland we worked with our local CCG (Clinical Commissioning Group), our community nursing team and Autism in Mind to talk with people with a learning disability, autistic people and families by offering telephone and online support and guidance. We know that self-advocacy groups across the UK also took the initiative to support their local communities. The Sunderland team contacted 1484 people over 13 weeks to offer practical support and guidance and refer people onto other agencies and organisations. Much of this support provided was around anxiety, loneliness/isolation and mental health concerns. The project had several important recommendations around health and wellbeing. In the main, the project identified the need for Health and Social care systems to: • • • •

Better understand the needs of people on the edge of their services. Work in partnership with more local community organisations. Reduce barriers for people to access support. Address issues of loneliness now, help to build networks and connections.

Supporting People’s Mental Health During Lockdown Research suggests that more than 40% of people with learning disabilities have issues with their mental health. The sudden change from community activities to working from home, alongside the closure of health and social care services, had a detrimental effect on everyone’s mental health. Self-advocates responded to this by sharing ideas about how we could support each other and local communities using online meetings.

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Advocates took the lead in organising fun Zoom sessions which included online quizzes and sharing hobbies and interests with our team and other self-advocacy groups. We organised an ‘It’s a Knockout Quiz Challenge’ and invited other self-advocacy groups to join us. This idea really took off and other groups hosted their own sessions and we were invited to meet other groups. We all loved the opportunity of building relationships with other groups and having fun together. Some of the quizzes became very competitive and we did lose heavily many times to groups such as Dorset People First and Speak Up! We organised a regular ‘Nature Natter’ community Zoom session to talk about taking an interest in and discovering nature. We learned that many self-advocates were excellent photographers and people shared photos of wildlife and flowers from their local areas. We invited guest speakers to talk to the group about areas of interest.

6.4 Developing Accessible Mental Health Training In August 2020 Sunderland People First worked with other self-advocacy groups and David Mahon from the Foundation for People with Learning Disabilities to design and deliver mental health awareness training for people with a learning disability and autistic people. The workshop sessions looked at what mental health is, the five ways to wellbeing and making plans. They focus on all the practical things we can do to stay happy and healthy. The workshops were designed to be led by people with learning disabilities supported by a worker. The sessions brought people with learning disabilities, family members and organisations together to take this important work forward. I enjoyed being a trainer and I think more people with a learning disability should deliver mental health training. Everyone has mental health and I was able to share what has helped me during difficult times. Jodie Williams—Self Advocate

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Mental health is such a big issue made even bigger by the Coronavirus pandemic. So, the Pass It On training is for people with learning disabilities and autism to start to talk about these things and learn to cope better. David Mahon from The Foundation for People with Learning Disabilities

6.5 Who Gets the Covid-19 Vaccination?: Beyond Urgent Campaigning In January 2021, the Government announced a national Covid-19 Vaccination programme and identified people who would receive the Covid vaccination first. The priority list included: • Everyone in care homes for older people, everyone aged 75 and over, and health and care workers. • Everyone aged 70 and over, and people who are ‘Clinically Extremely Vulnerable’ (including people with Down’s syndrome). • Everyone aged 65 and over. • Adults under 65 with ‘underlying health conditions’ (including people with ‘severe and profound learning disability’). Professor Chris Hatton from Manchester Metropolitan University wrote a blog entitled ‘Beyond Urgent: Covid-19 Vaccination and People with Learning Disabilities’. This research post made an urgent case for why the entire adult population of people with learning disabilities in England (and those providing daily care and support for people, including family members and paid support workers) should be a top priority for Covid-19 vaccination at this time. Sunderland People First contacted Chris Hatton, organised and co-­ hosted an online workshop with self-advocates and families to talk about why people with a learning disability should be a priority for the Covid vaccinations. This was a great example of self-advocates working in partnership with allies. As a data analyst, Chris was able to support self-advocacy groups by making data accessible and suggesting practical ways that vaccinations could be given.

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At the beginning of 2021 people with learning disabilities were: • Twice as likely to get Covid-19. • Between three and four times more likely to die of Covid-19. • Younger people with learning disabilities (aged 35+) were more at risk of death than older people generally (aged 65+).

6.6 Stop People Dying Too Young People with a learning disability and autistic people experience health inequalities and discrimination within health and social care services. Research has shown that people with a learning disability can die up to 27 years earlier than other people and often these early deaths can be prevented. Self-advocates and allies are part of a team called Stop People Dying Too Young. Our work is around preventing people with a learning disability and autistic people dying too young. This is known as the LeDeR programme. We know that there are many reasons why people with a learning disability die younger than other people. This includes a lack of accessible information about health services, poor care and delays in diagnosis and treatment, diagnostic overshadowing and not valuing people’s lives. Throughout the pandemic the Stop People Dying Too Young team continued to meet virtually and campaign for change. The group have responded to four LeDeR reports and made recommendations for change. We have delivered training to health and social care professionals, worked with health services to develop accessible guidance around end-­ of-­life planning and worked tirelessly to raise awareness of societal health inequalities. The group have created a list of values when the group and other people work on the LeDeR programme. The lives of people with a learning disability and autistic people have the same value as everybody else. Suzie Forthergill—Self-advocate, Stop People Dying Too Young Group

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Health and Wellbeing Activities In August 2021, Sunderland People First worked in partnership with an organisation called Media Savvy CIC to host twice weekly health and wellbeing community sessions. We ran an outdoor ‘Eat Smart Get Active’ group at Roker seafront and a session at the University of Sunderland’s City Space Centre. The sessions were designed to be accessible to everyone and encourage people to get back into the community and have fun learning about health and wellbeing with other people. We included a range of activities including Human MOT’s. This involved having our weight and blood pressure monitored weekly and talking and thinking about how we can all monitor our fitness in different ways. We all supported each other’s personal goals about improving our health and wellbeing. Our sessions at the University of Sunderland really demonstrated community inclusion as everyone was using community facilities and we quickly developed positive relationships with students and staff at the University. We have been joined by students from local schools and colleges and students at the University who have helped us facilitate sessions and learned about the individual needs of team members. Almost all attendees had never used a gym before or had an opportunity to box. Over a few weeks people were able to use the gym equipment independently and we discovered how many skills and talents people had regarding sports activities. This was the ‘feel good’ factor in everyone’s week and supported both our physical and our mental health. Self-advocate: ‘I met lots of new people and had fun doing beach games, seeing dolphins along the pier and learning new things like boxing and using the gym.’

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‘Team Inclusion’ at the University of Sunderland’s City Space Sports Centre, 29.09.2022

6.7 Be Cancer Aware Cancer is a leading cause of death among people with learning disabilities but people with a learning disability are less likely to access screening programmes, check their bodies or share concerns with family members, support staff or health professionals. From the CIPOLD (Confidential inquiry into premature deaths of people with learning disability) (University of Bristol, 2013), inquiry and LeDeR reports we know: • For people with a learning disability, cancer is often diagnosed at a late stage, with concerns of diagnostic overshadowing and a lack of reasonable adjustments to support diagnosis and treatment. • There are lower uptake rates across all screening programmes.

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• Those with a diagnosis of cancer are less likely to be informed of their diagnosis and prognosis, be involved in decisions about their care, be given pain relief or receive palliative care. (Information provided by Northern Cancer Alliance (2023) Be Cancer Aware is a co-production project that works with experts by experience from across the North East and Cumbria. This free peer education training is designed to support people with learning disability, families and carers understand more about cancer. This is a great example of partnership working and gives people the opportunity to learn about cancer in a supportive environment. Information is accessible and gives people the opportunity to ask questions. Our Case Study: Sharon was involved in the design and delivery of the Be Cancer Aware training course and was able to share her experiences of the importance of accessible information. Sharon received an invitation for a routine mammogram appointment in easy read—a format which she needs to fully understand written information about her care. But when the results of the mammogram meant that Sharon had to be recalled for further tests, the additional letters she received were not in easy read, meaning she had difficulty following them and became distressed about what this meant and what would happen next. Sharon highlighted her experiences to local health and social care champion Healthwatch Sunderland, which raised the issue with national bodies NHS England and NHS Improvement. As a result, a series of template follow-up letters have now been translated into easy read, improving the experiences—and potentially the safety—of countless breast screening patients across the country. Sharon said: ‘When I received the letter to go to the hospital, I didn’t know what it said, as it wasn’t in easy read. This made me nervous, but I spoke to Healthwatch and now I feel really good that we have been able to help so many women across the country who need easy read letters.’

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Sharon Bell with Wendy Hadlington from Healthwatch Sunderland showing the easy-read breast screening recall letters that she led on

Speaking up is never easy, especially when you are talking about screening services. As a self-advocacy group, we have developed a brilliant relationship with our local Healthwatch team. Sharon was so brave to share her story about breast screening services and her anxiety about follow up appointment letters. Sharon was supported by Wendy and the team to follow-up her concerns and was supported at every stage. Sharon has now retired after 28 years at Sunderland People First. I love that Sharon’s last work as a self-advocate at Sunderland People First was being supported by Sunderland Healthwatch to make a difference to women with a learning disability across the country to make breast screening services accessible for everyone. (Andy Fox—Development Worker, Sunderland People First)

6.8 Reflections and Summary Groups such as Sunderland People First and hundreds of self-advocacy groups across the UK and indeed the world can be proud of how they provided support in different ways to members of the community during such difficult times. Covid was such an unknown and frightening event for the whole population. This was so much more complex for people struggling to understand what was happening, unable to read or process rules. The campaigning side that came to the fore was so important because people with learning disabilities and autistic people were not

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treated well or as equal citizens. The self-advocacy groups locally and across the UK were vital to providing this expert support and Sunderland are proud of their record in this respect. We would encourage people to read a report available on Learning Disability England’s website entitled ‘Filling in the Gaps: The Role of Self-Advocacy Groups in Supporting the Health and Wellbeing of People with Learning Disabilities Through the Pandemic’ (Rouse et al., 2021). This research looked at what self-­advocacy groups achieved during the pandemic and shares best practice. There are important messages in this work about how to set up projects and keep them going. Sunderland has many issues around poverty and inequalities. Even so the group, the self-advocates, have been able to make differences in supporting the health and wellbeing of people’s lives. There are challenges in the work we have described. Much of it is about finding funding for projects and keeping them going. It is also about knowing there is a secure base and making sure everyone can connect. Here is a list of Top Tips from the work of Sunderland People First to help other groups think about some of the things they could do well in their own area. Top Tips for Working Well • Always use personal stories and people’s own experiences. • Meeting face to face is the best way to work. • It is important to support people to use technology well. • Information needs to be made in easy read. • It is very important to keep connected to people who are stuck at home. • Training and workshops should be made and led by people themselves. • Good support is key to helping members take part in the best way. • Working in partnership makes everyone stronger. • Getting support to keep healthy and well stops people dying too young. • Peer education is powerful and helps save lives.

Smile Postcard At the beginning of 2020, Sunderland People First began sharing a collage of photos of things that had made people smile throughout the week. We have shared Smile postcards on social media each Friday and every

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week since this time. We have loved how other self-advocacy groups and people we work with have added their own ‘Smile photos’ to this thread on social media. We are hoping to create a book of every single smile postcard as they are each unique and show a story of how we have supported each other during the pandemic. ‘Sunderland People First have been a family to me’ (Phil Hughes—Self-advocate, Sunderland People First) ‘Thank you for all the work you do, including making me smile every Friday’ (Professor Katherine Runswick-Cole—Chair in Education, Director of Research, University of Sheffield)

6.9 Using Health Services: CASBA Members’ Stories The following health stories are from a member of CASBA, an advocacy group in Birmingham. Their main stories are in Chap. 3.  Here they share their experiences of knowing their rights but finding some frustration with using health services. We think health services in Birmingham are sometimes failing to take into account people’s disabilities and information is difficult for us to understand. Not enough is produced in easy read. People tend to use jargon so it’s not easy to understand things, especially letters from the NHS or doctors. Some doctors won’t give longer appointments; it all depends which surgery you go to. Some are good at giving more time. I’m Brian. I’m 54. I lost weight because of my bad breathing and health. When you lose weight, you don’t get so out of breath, like when you have to run for a bus. I went after I spoke to the advocate at CASBA and she took me to see the Busy Bees who ran weekly groups. They told you about the labels and what foods have loads of sugar and fat in them. I went for 8 weeks for one hour. I went with a friend. I lost four stone. I felt really great!

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It was hard to lose weight but I did it. Sometimes I get up and help put my neighbours’ bins back. I can now cycle and I walk a lot more, especially hills. People don’t take us seriously because they think we can’t do things. It is hard to access the courses we want because of the lack of support in the classroom. Sometimes when we do not feel well the doctor doesn’t seem to listen. It is hard to get an appointment to see the doctor. They want to talk to us over the phone. Some of us find it hard to communicate over the phone. We prefer to talk to them in person. Some of us don’t have phones or computers so it is difficult to make an appointment. Some of us need someone to support us when we see a doctor or go to the hospital, as the person supporting us will help us get our point across better. In the hospital they told me I needed to lose weight as this was giving me high blood pressure and I could go blind. I was very worried. I came back to CASBA and they helped me with a weight loss programme. The hospital gave me a website to go on which helped people lose weight. When I went on there it was too complicated to read. My experiences have led to others at CASBA want to lose weight and make healthier choices. The only issue is ongoing support after the 8 weeks. Keeping the weight off is hard. Chrissie’s Story About Using Health Services and Reasonable Adjustments Chrissie is from Building Bridges and has a number of health issues. Her story of working for over a decade in charity shops is in Chap. 3. Here she talks about how she has managed to have good healthcare support. I’ve told my GP I have a learning disability and she understands me. I have tablets for my diabetes. I won’t eat fruit on its own—it has to be with something like jelly, rice pudding or trifle. I don’t like yogurt. I get my toes nails done by the NHS as you’re not allowed to cut them yourself when you have diabetes. I have other tablets too so I have them in a box so I know what to have when. The cholesterol one stops you having a heart attack. The diabetes one stops you going low or high.

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I have shown my ‘just a moment card’ at the hospital so they can help me find the place where I should go to as I can’t read the signs. They need more arrows and information. We need more pictures to help us find where to go. Or put footsteps on the floor so people with a learning disability know where to go. I just had to go to hospital for a couple of nights. I wasn’t well and I had an ambulance. It was a long wait. Two paramedics came out and they were kind and gentle. They were worried my oxygen was low and my heart. Two doctors came to see me, and they wondered if I had kidney stones and they sent me to a Xray. They explained things to me slowly so I could understand. My sister came, but then she had to go as she had to have her nails done. So I was on my own most of the time, but the staff were kind to me. When I was in hospital I didn’t understand what the doctors were saying as they weren’t English. There should be a doctor that understands people with a learning disability. If they wear masks I can’t understand them. Another time they kept texting me to book at blood test so I had to ring them up and I was 44 in the queue, so I hanged up. Someone told me you can email them with your date of birth and your NHS number, but I don’t have an email account. So I had to ring again and this time there were 45 in the queue and it took 15 minutes before anyone answered the phone. Chrissie’s Top Tips • There should be pictures on the signs in hospitals, so you know where to go. • There should always be someone in the appointment who understands about people with a learning disability.

Kraig and Reasonable Adjustments Kraig who is also from Building Bridges shares his experiences of using health services and what works for him in getting the right to healthcare. The people at the health services haven’t always been helpful, both the doctors and the hospital. But when I went to the dentists recently I had

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to fill my information in on a screen, and the receptionist helped me. It was Ok as she helped me when I got stuck. I’ve got high blood pressure at the moment so I have got to reduce the salt I eat, and I need to have to check my vitamin D levels. To get the right to the same healthcare as others, I need the staff to be more helpful, and to be kind. Letters don’t work as you can lose them, a text on your phone is better. A text is quicker. But I had a text telling me the time of an appointment the other day, but it didn’t say where to go! So I had to phone them, then the next day the letter came! And I like easy read information, it’s easier to understand. I always go and see the same nurse and she knows me well, this is very important to see the same person each time. She talks to me properly (respectfully) and when I leave she has a joke and says ‘don’t play up!’. The hospital staff don’t always recognise that I have a learning disability and so I use the Building Bridges ‘just a moment card’ to show them and this can help. This card tells people I have a learning disability and they need to speak more slowly and explain things simply. This helps.

Kraig’s Top Tips • Do regular walks to keep fit and healthy. • Do more exercise. • Eat properly. • Ride a bike if you have one.

6.10 Conclusion The experience of Sunderland People First and these three short accounts above show us that despite the right to health care on an equal basis with others, this is not the experience for many people with a learning disability. And it also shows how many people often need to be proactive and assertive to ensure that reasonable adjustments are made for them. The Oliver McGowan Mandatory Training had just started to be rolled out in

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England to raise awareness of people with a learning disability and autistic people. It is mandatory training for all staff working in health and social care. We hope this will go a long way to improving the right healthcare and providing reasonable adjustments to those who need them.

References Community Care. (2021). People with learning disabilities face ‘discrimination’ as data shows Covid death rate six times the average. https://www.communitycare. co.uk/2021/02/12/people-­learning-­disabilities-­face-­discrimination-­data-­shows-­ covid-­death-­rate-­six-­times-­average/. Forbes, C., Liddle, J., & Shutt, J. (2022). The impact of COVID-19 on the UK economy. Northumberland University. Government UK. (2021a). COVID deaths of people with learning disabilities. https://www.gov.uk/government/publications/covid-­deaths-­of-­people-­with-­ learning-­disabilities/covid-­deaths-­of-­people-­with-­learning-­disabilities Government UK. (2021b). Levelling up the United Kingdom: Executive summary. https://www.gov.uk/government/publications/levelling-­u p-­t he-­u nited-­ kingdom/levelling-­up-­the-­united-­kingdom-­executive-­summary. Heslop, P., Blair, P., Fleming, P., Hoghton, M., Marriott, A., & Russ, L. (2018). Learning disabilities mortality review programme: Annual Report 2018. University of Bristol. King’s College London. (2021). LeDeR-2021-Easy-Read-Report.pdf. https:// www.kcl.ac.uk/sites/default/files/2021-­0 6/LeDeR-­2 021-­E asy-­R ead-­ Report.pdf. Northern Cancer Alliance. (2023. Home  - Northern Cancer Alliance. https:// northerncanceralliance.nhs.uk/ Office for National Statistics. (2023a). Labour market in the regions of the UK: January 2023. https://www.ons.gov.uk/employmentandlabourmarket/peopleinwork/employmentandemployeetypes/bulletins/labourmarketintheregionsoftheuk/january2023. Office for National Statistics. (2023b). Health state life expectancies, UK. https:// www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/ healthandlifeexpectancies/bulletins/healthstatelifeexpectanciesuk/ 2017to2019.

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Rouse, L., Tilley, L., Walmsley, J., Picken, S., Seale, J., & Wallace, L. (2021). Filling in the gaps: The role of self-advocacy groups in supporting the health and wellbeing of people with learning disabilities throughout the pandemic. The Open University. United Nations. (2006) Convention on the rights of persons with disabilities. https://www.un.org/disabilities/documents/convention/convoptprot-­e.pdf. University of Bristol. (2013). Confidential inquiry into premature deaths of people with learning disabilities (CIPOLD). Final Report.

7 Women and Family Liz Tilly

This chapter is about women’s rights, the right to marry and have a family. It brings stories which demonstrate a breadth of lived experiences, including marriage and parenthood. The introduction was written by Liz Tilly with contributions from Sal, a woman who ‘came out’, Nazia a first-time mother, followed by a long story from Karen, which covers a range of family relationships and her story of being an abuse survivor and to now living a better life and feeling empowered. The chapter finishes with Kraig’s story of being a father. The chapter covers Articles 6—Women’s rights; and Article 23—Respect for home and the family.

Article 6—Equal rights for women. Article 23—Right to non-discrimination in all matters relating to marriage, family, parenthood, relationships and fertility.

L. Tilly (*) Building Bridges, Halesowen, UK e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2023 L. Tilly, J. Walmsley (eds.), Rights in Practice for People with a Learning Disability, https://doi.org/10.1007/978-981-99-5563-3_7

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Introduction This chapter focusses on both the rights of women and the right to have the breadth of relationships that others typically have: family, partners and parenthood. Article 6 in the Convention on the rights of women and girls is due to it being recognised globally that women and girls can experience multiple discrimination in all areas of life. Due to this disparity, UN Sustainable Development Goal 5, adopted in 2015, is to ‘achieve gender equality and empower all women and girls’. Women with disabilities are known to experience more discrimination than men, and especially in relation to issues of sexuality and fertility, and more likely to experience exploitation and abuse (Atkinson et al., 2000; Scior, 2003). In recent years we have started to refer to the concept of intersectionality. It is a way to understand the layered forms of discrimination experienced due to multiple aspects of identity, such as gender, disability, sexual orientation, religion or age. Many women with a learning disability and parents with a learning disability typically experience this multi-layered discrimination, as the stories in this Chapter tell us. The Convention requires countries to ensure women are empowered to enjoy all the rights specified in it. The stories in this section outline some of the lived experience of women who have experienced abuse in the past, and yet fought their right for non-discrimination with resilience, determination and the support of friends, families and sometimes paid support. Article 23 focuses on non-discrimination in all matters relating to marriage, family, parenthood, relationships and fertility. Much of this Article is about the right to family life, respect for the home and the family. People with disabilities have equal rights to marriage, a family and personal relationships. Parenthood was an aspect of life specifically denied to the thousands of people with a learning disability sent to institutional care over many decades up to the 1980s. People were not only denied the opportunity to a typical family life, they were physically segregated from the ‘opposite sex’ (Atkinson et al., 2000) and denied an intimate relationship for fear of it resulting in pregnancy (Walmsley et al., 2015). The numbers of parents with a learning disability living in the UK and Ireland are hard to establish, as these parents typically have a mild learning disability and so may not self-identify as having a learning disability

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or this is undiagnosed so professionals may not be aware. However, it is known that many parents with a learning disability struggle due to additional factors such as lack of close family role models and support, and poverty. So whilst more people with a learning disability are becoming parents, a high percentage of children born to these parents in England are removed into the care of the local authority (Nicolle, 2023). The national survey ‘Adults with Learning Difficulties in England 2003/4’ (Emerson et al., 2005) found that almost 7% of those interviewed had children; however almost half of them were not living with their parents. Information from CHANGE suggests there is an estimated range between 23,000 and 250,000, with 1 out of 6 children assessed by social services have a parent with a learning disability (CHANGE, 2010). There are several policy references in recent decades in England and Wales that acknowledge that children are best placed with their parents wherever possible and that parents with a learning disability need appropriate support; Children Act (1989) and the Valuing People white paper recognised an increase in the number of parents with a learning disability, who are also from socially and economically disadvantaged groups. It stated that parents need proactive support, described as timely and appropriate, and that adult and children’s services should work closely together. However parents with learning disability are more likely than any other group of parents to have their children removed (IASSID Special Interest Research Group on Parents and Parenting with Intellectual Disabilities, 2008), with approximately half not having their children living with them (Booth et al., 2006; MacIntyre & Stewart, 2012). Valuing People Now Section 7.7 (Department of Health, 2007) confirmed the right of people with a learning disability to form relationships and have children, and recognised that often parents were not getting the support they needed, sometimes due to lack of recognition of their need. It again called for adults and children’s services to work closely together, and said that parents should be supported through mainstream children’s services and also have access to advocacy. It also referred to the good practice guidance and the need for this to be disseminated and for training so that staff working in the field can implement it. The Department of Health and Social Care, in collaboration with the Working together with Parents Network, University of Bristol, have produced several updated versions of this, the latest being 2021 (WTPN, 2021).

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The Good Practice Guidance states that good support for parents with a learning disability should include: • Accessible information and communication. • Clear and co-ordinated referral and assessment procedures and processes, eligibility criteria and care pathways. • Support designed to meet the needs of parents and children and based on assessments of their needs and strengths. • Long-term support where needed. • Access to independent advocacy and to support for self-advocacy. Nazia has a positive story to tell, unlike the other parents featured in this chapter. The UK Joint Parliamentary Committee on the Human Rights of Adults with a Learning Disability (Joint Committee on Human Rights, 2008) report entitled ‘A Life Like Any Other?’ reinforced that to remove a child from its parents unless the child was at significant risk was an infringement to the right of the child and their parents under Article 8 of the European Convention on Human Rights and the Human Rights Act 1998. The report stated that if the good practice guidance was implemented efficiently this would reduce the risk of children being removed from their parents. The articles which are the focus of this chapter also outline the right to have a relationship on an equal basis with others. Research shows that many gay and Lesbian people with a learning disability who want to pursue a relationship can face many challenges (Abbott & Burns, 2007) as Sal’s coming out story highlights. The stories which follow shed light on the struggles and accomplishments of people with a learning disability to enjoy their rights as women, to have an intimate relationship and also having a family.

7.1 Sal’s Journey to Acceptance Sal’s story was written by herself about how she came out and her courage and resilience to enjoy her right to non-discrimination (Fig. 7.1).

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Fig. 7.1  Illustration by Sal Lapsley The car is travelling along a road on its journey towards the flag which represents the LGBTQ+ community

About 6 years ago I had a crush on one of my bosses who was a woman. That made me start thinking that maybe I liked women. I did go through a phase when I was at school, but I think I shut it down because I didn’t know much about it, and I was scared. I was worried about people’s attitudes towards me and the only people I had to talk about it didn’t know much themselves. Gay people weren’t really on TV or Films back in the 80s and 90s. The woman I had a crush on was in a relationship with another woman and I thought, oh my god I want that! My support workers helped me understand my feelings and I decided I wanted to tell my Mum and Dad. By the time I realised I might prefer girls, it wasn’t such a taboo. I was

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worried about telling my parents, would they accept me? Well of course they did! Mum and Dad are legends, absolute legends! Where I used to live before I moved, it just wasn’t a nice place. It wasn’t a prison because I was able to come and go as I pleased but I didn’t feel as safe. My Support Workers would say, ‘[Y]ou can’t be gay’ and I would say ‘why’. I think they were frightened, and they didn’t have good training on how to speak to someone with a learning disability about sex and love. The thing is, you can look online but that’s people being paid to do that, it’s not in the real world. It took me a few years to have a relationship but in those few years I got to know myself and how I was sexually attracted to somebody. I started seeing a friend, but it didn’t work out. When Lockdown hit, like everyone I got really lonely. I started to talk to people online. I met a girl who messaged me. We got talking and she sent me pictures, she sounded really legit and I fell for her good and proper. She just brainwashed me, she had lots of clever excuses, and I believed her. She started saying she needed money and then she could come and see me. I ended up sending her £900 before I realised she was a catfish. My attitude changed. I went into my own little world. I wasn’t joining in anything. But then I got some really good help. I’m in a good relationship now. I wouldn’t recommend someone goes on a date or dates online without someone in the background supporting them, because you just never know. But just because there are risks, doesn’t mean to say that we shouldn’t be allowed to try. Everybody has the right to have love, even if it’s a friendship that leads on to more. Nobody should be scared to be who they are; we all need trusted friends to be able to explore our love and sex lives. There is a generation thing, and we need to understand that things were different in the 60s 70s 80s; being gay was taboo and it still is in some cultures. My ultimate dream is to give people with learning disabilities or people who have autism advice on if you are gay, lesbian or trans, to be able to express your thoughts and feelings. I want to give positive role models to young people in schools, so no one has to feel like I did back then. It is about having that support network. I would tell them, if they want to experiment— experiment by yourself. I worry about things like Only Fans; you don’t know if the person behind that camera is the person, they say they are.

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Everybody has the right to have a relationship no matter what; at the end of the day it doesn’t matter who they are. Let’s look at someone with a learning disability or a physical disability; yes there might be barriers along the way, but people are entitled to their relationship. Sometimes people need a bit of extra help to get there but we all deserve love, like a car journey. It is so frightening to talk about this, but is it rewarding to be yourself, be who you are. I always say to people to watch the Greatest Showman— that song ‘This is Me’—if you don’t have a dry eye after that, it’s opened up your heart, its opened up your soul. Sal’s Top Tips: • Be careful about using apps to chat to people you don’t know. • If people ask for your personal information, don’t give it to them. • Don’t give out your exact location. • If you are researching personal things on the internet, make sure you do it from a personal device. • Don’t be afraid to ‘come out’ and be proud of who you are!

7.2 Nazia: Becoming a Mom This short, powerful story from Nazia is about being a parent for the first time and the birth of her daughter in hospital. She was supported by her sister and hospital staff. It shows how important it was for her to have the ‘reasonable adjustment’ of the learning disability nurse in attendance at the birth of her child. For me it was a hard and emotional time. It was my first child and I didn’t know what to do. In hospital I got help from the learning disability nurse. She gave me step by step instructions and what’s going to happen next. My sister was there too, and if I didn’t understand anything the midwife said she would explain it to me. I was very emotional and happy when my daughter was born. Everyone at the hospital was helpful. When she was born I was crying and I was also laughing at the same time. And so was my sister! Laughing and crying at the same time. It was a very emotional time. I was nervous to hold her in my arms for the first time. My sister had to feed her as I was scared as she was so tiny. I was frightened I would

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drop her. I was scared that she might not be normal and have a learning disability like me as she has my genes. Now she is 6 years, she can read and she is a good swimmer. The good part was I had my daughter. It was a miracle; it’s hard to describe it.

7.3 ‘I like being different to everyone’ Karen’s story, told with support from her daughter. This story is about the experience of a woman with a learning disability remembering her childhood and having parents with a learning disability, having a long-term relationship, experiencing abuse and being both a mother and a grandmother. It covers several decades and demonstrates incredible resilience of the writer to survive abuse and loss, and how not being under the radar of services who can support enabled the years of abuse to continue. A women with a learning disability can enjoy her right to be a successful parent, as this story about a mother and daughter highlights. A Story About Self-Determination My name is Karen, I was born in 1967. I have 2 older sisters. I grew up in Rowley Regis and I had a happy family life. We all got along and we all had learning disabilities. My dad could drive and we went to the family caravan in Stourport every weekend. My dad couldn’t read very well. We were members of the Salvation Army and always went to church. My parents had the uniforms, but I didn’t. My father was good friends with one of the captains who ran it. That’s where my mum and dad met. I was a member between the ages of 10–17 years. I practiced 4x a week with the choir and I hoped to be a member one day. Everyone was very friendly and supportive. My father passed away when I was 18 and my mother passed when I was 24. Then I lost contact with my middle sister when I was 28 and my older sister when I was 37. This was due to them all having their own families and doing their own things.

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Being Different I felt I had a normal childhood, but local people used to call our family names although we didn’t pay any attention to it. I didn’t realise me and my family were different until I was a teenager. We got called scruffs. My father got called Catweazle and Wurzel Gummidge, as I guess he looked like these characters on TV. I can’t remember the other names and it was mainly kids who called us names but I think their parents probably told them to say it. My family wasn’t well off and we often wore stained clothing due to not being able to buy more. We often wore clothes that were passed down. I was in a pushchair until age 10 as I had a rupture in my thigh. So people often stared at us. Looking back people must have known we had special needs from how we were different to everyone else. My parents never told me that I had any disabilities; it was my aunt who told me. My aunt regularly helped my parents out and I asked her why she did this and that’s when she explained that they had disabilities and that they needed support. After hearing that, I felt very different to everyone else. School Years I went to mainstream primary until I was 7, then I went to a school for children with a mild learning disability until I was 12 when I moved to a school for children with a severe learning disability. I had to move schools as I couldn’t learn the same as the other children and I fell behind. The special needs schools was easier. It had a different learning style and I could play more but I also found it boring and too easy. Diana was my first friend who also had learning disabilities. I didn’t know any other people with additional needs, until I attended the special schools. I felt more happier meeting people like Diana. I dreamed of becoming a nurse and felt sad when I realised I couldn’t but I got over it. I just wanted to be like everyone else. I always wanted to be able to read and I tried to learn by going to lots of different college courses in my adult year but it hasn’t worked. I still can’t read. But I have not given up.

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Living with my Abusive Boyfriend I had my first serious relationship when I was 17 with a boy who also has learning difficulties. We met at the Gateway club. He originally was interested in my middle sister but she had a boyfriend at the time. So, he decided to go out with me. My parents and his parents who also had a learning disability were friends, so they knew each other growing up. He was 10 years older than me, and he had 10 brothers and sisters. Many of them also had a learning disability. Our relationship moved on quickly. My boyfriend encouraged me to leave school when I was 17 and he made me leave the Salvation Army cos he didn’t believe in it. At 18 I got a council flat, and my boyfriend stayed 3 nights a week. After my father passed my mother came to live with me. But my mother had lots of seizures which scared me and I couldn’t lift her so I had to rely on my boyfriend’s help. He used to get cross at my mother peeing when she had a fit and he used to throw cold water over her. Because he wasn’t nice to my mother she went to live with my other sister. At age 19 I moved again and my boyfriend began living with me. Over time the relationship got worse. He would lock me in and take the keys, so I couldn’t get out. He put locks on all the food cupboards. He’d be gone for most of the day. He used to visit his family. Most days I was locked in from 10 in the morning until 10 at night. One day a council worker came out to see me and I explained that I was locked in and couldn’t leave. The council person came back the next day to speak to my boyfriend about locking me in. They said if he did it again, they would change the locks and involve the police. This stopped him for a while but then he began doing it again. By the time he came home I was very hungry and tired. I often fell asleep I was so hungry. When he came back, he’d wake me up and demand that I cook him food. If I said no, he would get violent. Some days he would cook foods that he knew I didn’t like and make me eat everything, otherwise he’d punish me. He’d buy takeaways and make me eat them, which made me sick. In these years I put on lots of weight. He would abuse me, he’d shout at me, he’d hit me, he’d make me cry. He would get his older brother to threaten me. I was frightened as he used to be an army soldier.

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My boyfriend claimed my benefits. He’d give me £15 a fortnight but I still had to ask him before I could buy anything. He did the food shopping; I had no control of the household or the finances. I was trapped. Scared and depressed. He frequently forced himself on me. My partner’s sister had to explain what sex was because I didn’t know anything about it. If I didn’t do what he told me to do he would hit me or take advantage of me in my sleep. Having Children I had two children during that relationship. A boy at aged 25 and a daughter Jessie at age 28. My son had multiple learning difficulties and severe behavioural issues. I couldn’t cope with his needs, as well as having a 1-year-old. My son often shows aggression towards my daughter and those around him, due to lack of understanding. He was unable to verbally communicate, which made it harder to care for him. I started to have support at home from a local organisation and I felt relieved. But due to my son’s needs and the abuse, my son was taken away by social services when he was 4. He was put in foster care and I was heartbroken. I started to have very low moods, so a support worker took me to see the doctor and I found out I had bad depression. I didn’t know what depression was until the doctor explained. I just felt helpless, sad and lonely. It had got worse after my son went into care. My boyfriend became more aggressive towards me, as he blamed me for our son being put into foster care. After 12 years when I was age 29 our relationship ended. I had to leave my home and have a protection order. I moved into a woman’s refuge with my daughter. I used to visit my son at the local family centre, which I enjoyed. Life After my Boyfriend I moved into a flat with my daughter and I felt happier on my own. It got easier, with the help of my support worker who helped me be independent. Later we had our own house with a front garden and nice neighbours.

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I started going to church more, as it made me happy. People in church didn’t make me feel excluded due to my needs. They treated me the same as everyone else. I helped with the church’s mother and toddler groups. I was welcoming families, making hot drinks and toast. I felt happy looking after other people and being part of a team. My friends at church encouraged me to be independent and to help with the activities. They also helped me with things like how to use a cash machine. Over time me and my ex-partner developed a friendship for our daughter’s sake, but it was rocky at times. My daughter had contact with her father until she was 15. Being a Mom on my Own As my daughter got older, I felt sad that I couldn’t help her with her school work. My daughter doesn’t have learning difficulties and was achieving all her academic goals. But I found her parents’ evenings difficult as I could not understand the big words the teachers would say. I felt like I always had to keep explaining myself to others and it made me feel sad having to express my weaknesses for them to understand me. I had to ask my daughter’s teachers and my support staff to help my daughter with school work, because I couldn’t do it myself, as I could not understand it or read the words. I also had help of my support worker when Jessie asked questions that I couldn’t understand and didn’t know the answers to. I used to get frustrated with myself and Jessie, as I didn’t know the answers and I couldn’t help her myself. As she grew up, my daughter began to help me more and life got easier. She was able to do things that I couldn’t, such as reading letters. I am very proud of my daughter. She left college with qualifications in health/social care and pharmaceutics. Jessie planned on going to university to become a pharmacist but found out she was pregnant. She now has a healthy 6-year-old and plans to go to university in the upcoming years. In the meantime, she cares for myself, whilst doing online courses and looking after her son. She hopes to become a learning disability nurse, to help people like me to live fulfilling lives.

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Help and Support I found it difficult having to ask others for help for the things that I was unable to do. But over time I think that things got easier. With my daughter’s help at home, I became more confident and I feel happy in life. I was given the opportunity to volunteer with other people with learning disabilities at a day service. I loved volunteering, it made me happy, but unfortunately I had to stop due to arthritis. This made me feel sad. The doctor/hospital told me that I may be wheelchair bound but that was 14 years ago and I have persevered. I choose to use a walking frame despite the daily pain. The other day a lady saw that my shoelace was undone and she asked to tie it for me, I was surprised and I felt bad. I didn’t realise my lace was undone. But I wouldn’t have been able to bend down, as I don’t have very good balance and I might fall over. I can’t pick up one leg when I am standing, so I would have had to find somewhere to sit and had a struggle to try and do it. I felt bad having to rely on a stranger than being able to do it myself. Other Bad Experiences I still have some bad experiences. I have got on buses before when the drivers haven’t lowered the bus for me to get on, even after I’d asked them to and I have almost fell a few times. Other passengers on the bus tell me not to sit in the disabled area because I only have a walking frame and not a wheelchair. So, I don’t feel confident going out alone. When I explain I have learning disabilities people will often treat me like a child and they try to tell me what to do, which makes me feel small and angry. As I have my own thoughts, views, opinions and ideas on things. I have experienced people ignoring me, leaving me out of conversations and actually moving away from me during some clubs, so I no longer go to these groups. I have even had people whisper about me to other people in front of me. Shops often overcharge me or short change me if I go places on my own. I have been told to leave my walking frame outside of shops, meaning I couldn’t go in as I can’t walk around shops without it. I already have

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difficulty finding what I need from shops due to not being able to read and these things just make things harder for me. I don’t like confrontation, so I leave without getting what I need. I have experienced doctors ignoring my health complaints, due to me being unable to explain it sufficiently for them to understand. So, I have to have someone to go with me to explain what’s wrong. I often feel annoyed that people don’t take the time to listen or they aren’t willing to understand what I mean. I went to the doctors with stomach pain. They gave me constipation medicines; I ended up having to go to A&E and having an operation for gallstones. Some people try to overrule my choices, even though I have the capacity to make the choices myself. People don’t try to listen or understand my needs, they’ll assume my needs or they’ll immediately dismiss me. People often overestimate my abilities or they underestimate them. People often use complicated speech and my daughter has to ask them to simplify the words, so then I can understand. Instead, they’ll speak directly to my daughter and ignore me. So my daughter pauses the conversation and simplifies everything what they are saying, so I can understand. So then I’m included in the conversation and then I can reply by myself. Some people will talk down to me like I’m a child or they’ll talk really slowly but still use complicated speech, so I still can’t understand. Sometimes I get fed up of explaining that I don’t understand what they are saying, so I just sit there in silence. Being Strong and Determined I never give up and always try my best, despite any obstacles I may face. I push myself to do things, as I don’t want my disabilities to stop me. I feel as though if I didn’t have the support of others and the ability to voice my needs, that I wouldn’t be where I am now, life’s got easier as I got older and I take each day as it is, people treat me better now, than ever before. Making friends was hard when I was younger. It’s much easier now. I enjoy going to groups for people with additional needs and being able to socialise with others like me. I also attend weekly activities with people with all abilities. I attend these groups supported due to some

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people being unkind to me purely due to my disabilities. This is a daily occurrence that I face unfortunately. Throughout my life I have known people who have treated me unfairly or have took advantage of me, but still I choose to put myself out there and act with kindness and ignore the negativity. I view the world positively and enjoy the little things in life. I like being different to everyone. I agree with this statement—society treats people better now than previously, due to the awareness and understanding of individuals with additional needs. Today I have a community support worker, who supports me for 11 hours a week. They support me in attending activities within the community. Some of the others in the groups have learning disabilities, some have physical disabilities, some have hearing impairments and some don’t have any disabilities. It’s a mixture of all types of people and that’s what I like, everyone is really nice. I do Art club, knitting/crochet club, coffee club, bingo, over 50’s club, discos. I take part in clubs at different places. I spend a lot of time with my grandson. He is helping me learn to read and I’m teaching him how to knit a scarf. Now I am in full control on what I want to do, whilst feeling supported. The support workers help me to feel more confident when meeting new people. I need a lot of reassurance doing this, due to the bad past experiences. I dislike people taking away my independence and making decisions for me. I like being given advice but not people trying to control my choices and decisions. In the past year I have been in contact with my sisters and now see them regularly. They are unable to visit me due to having to care for their partners, both are wheelchair bound. So, it’s more challenging for them to go out. Jessie drives now, so it’s more easier for her to take me to visit them. My older sister has 4 children, 2 girls and 2 boys. But she no longer has contact with them. She also has 5 grandchildren. My middle sister has one daughter, who regularly visits her. She doesn’t have any grandchildren yet.

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More places are more user friendly; there’s more pictures with words and more ramps. My support workers help explain what I mean when I get my words mixed up, when talking with friends. More people are more understanding and willing to take the time to help me. I think it would be boring to be the same as everyone else. Happy and proud of myself to have my own home. It’s my safe space and like being able to independently do everyday life skills What I Like I Iike doing things differently, proving to myself that I can do it despite my disabilities. I Iike having the freedom and independence to do whatever I Iike. I Iike people to allow me to try to do things by myself, than having to rely on others. I Iike having the ability to choose what I wear and what I eat. I Iike being able to have full control of what I’d like to do each day. I Iike knowing that I don’t have to rely on the people. I Iike expressing my thoughts and opinions without being judged. I like going shopping and independently buying things. I Iike knowing that I have a voice and that people will listen to my wants and needs. I Iike feeling supported and empowered. I Iike helping others and teaching them to knit and crochet. I Iike having friends. I Iike being treated the same as everyone else. I Iike being treated with respect. I Iike being able to use services that cater to my needs. I Iike being able to say my dislikes and being able to say no. I Iike having the same freedoms as everyone else. I Iike making decisions. I Iike being able to vote. I Iike doing things I enjoys like knitting. I like sharing my skills and life experiences with others. I like being different.

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My Son My son is now living in Wales in a residential home by the beach. But I am still a big part of my son’s life; we have an amazing bond. He has lots of friends. We call one another 2 or 3 times a week and video calls at least once a week. I really look forward to it. He comes to visit me every 3 months and on special occasions like birthdays. We go to lots of different places together to do shopping and we go out for meals. Spending time together is very important for both of us. My son often calls me for advice on how to do daily things, like baking cakes and I enjoy talking him through it. Whenever my son has any issues he calls me and we talk about it. I think we have an understanding between us, as we both have disabilities. I try to encourage him to be independent and not to give up trying but I know how hard it is, as we face many setbacks with our disabilities. We both learn from each other, he’s recently taught me how to video call. So now we can see each other whenever we like. And Her Daughter Says … I stopped seeing my father when I was 15 years old. My father was always very critical towards me and favoured my brother. He seemed to think I was my Mom’s and my brother was his. He told me I wasn’t clever enough to go to university. He constantly commented on my physical appearance and encouraged my brother to call her mean names. Such as fatty and dumb. Eventually I had enough and stopped seeing my father and brother. My father could not understand why I no longer would to see him, even after I explained. He died when he was 62 with complications due to diabetes. In the past years I have started speaking to my brother again. I support my mother with most of her daily household things. Such as making sure bills have been paid, booking appointments, general upkeep of the home, guiding her to make good choices, safety in the kitchen, support getting dressed when required, reminders to eat, take medication and do daily hygiene practices. I also support her emotional needs. To make her feel seen, valued and listened to. I try to instil a regular routine for her, where she is independent, supported, empowered and advocated for at the same time.

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It’s difficult caring for a parent, especially when they have learning disabilities and are physically disabled. I try to get the caregiver and care receiver roles to switch back and forth between us, as it’s quite easy for me to get stuck in the care giver role otherwise. For example: I often ask my mother for support or advice, even when I do not need it. As I know in doing so it allows her to be in the caregiver/parent role, which I know is very important to her. I’m naturally a fixer, so when I see my mother struggling with an obstacle I want to help her. However, I know in doing so I will be stopping her from having the chance to figure it out for herself and unintentionally disempowering her. So I wait patiently until she asks for my help and then we go over it together. So then next time she faces it she feels confident in doing it herself. My mother taught me to never give up, no matter what obstacles I may face. It’s always better to try and fail, than to not try at all. She has always encouraged me academically and is very proud of my achievements but I couldn’t have achieved it without her ongoing support. I hope one day to support other individuals and families who have been in a situation similar to mine and my families.

7.4 Kraig’s Story This short story from Kraig tells of his enduring love for his daughter, despite her no longer living in the family home. It is an example of how the rights of a person to have a relationship and children can come into conflict with the needs and rights of the child. But through supervised contact sessions, the family relationship can continue to some extent. I love my daughter and I see her whenever I can, as she got put into care. We had her at home until she was four. She is 12 now. It was because my wife had the children from her previous relationship taken away off her before she met me. When she was born I was nearly crying I was. I was there all night. My wife was exhausted, she was in pain, in agony.

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She is my first child. It was nice and happy when we bought her home. At night when we put her to bed she went to sleep. Later when my wife had a small operation I had to look after myself for a couple of days. I had to change her and feed her. I enjoyed it. When the social workers came to take her away I thought I’d never see her again. We weren’t very happy about it. But there was nothing we could do about it. She is in foster care in another city. They are from Eastern Europe and they are teaching her their language. And they took her to Disneyworld and she saw Mickey Mouse. We see her for contact now in the school holidays and half terms. We don’t have any phone contact. It’s arranged through the social worker. I play her up and she plays me up! We give her presents and she gives us presents. She loves to see us as well. My Top Tip • Make sure you are there for them.

7.5 Conclusion The stories in this chapter are all powerful recollections of needing to be strong and resilient during challenging times, and that whilst having the right to have a relationship and a family, this right isn’t always enjoyed by people with a learning disability. It also demonstrates how personalised support is needed for this right to be upheld, especially in the role of parent.

References Abbott, D., & Burns, J. (2007). What’s love got to do with it?: Experiences of Lesbian, Gay, and bisexual people with intellectual disabilities in the United Kingdom and views of the staff who support them. Sexuality Research & Social Policy, 4(1), 27–39. Atkinson, D., McCarthy, M., Walmsley, J., Cooper, M., Rolph, S., Aspis, S., Barette, P., Coventry, M., & Ferris, G. (Eds.). (2000). Good times, bad times: Women with learning difficulties telling their stories. Bild Publications.

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Booth, T., McConnell, D., & Booth, W. (2006). Temporal discrimination and parents with learning difficulties in the child protection system. British Journal of Social Work, 36(6), 997–1015. CHANGE. (2010). Our lives; A DVD about the lives of parents with learning disabilities. Leeds. Children Act. (1989). c.41. The Stationery Office. Department of Health. (2007). Valuing people now; From progress to transformation. The Stationery Office. Emerson, E., Malam, S., Davies, I., & Spenser, K. (2005). Adults with learning disabilities in England 2003/4. Health and Social Care Information Centre. IASSID Special Interest Research Group on Parents and Parenting with Intellectual Disabilities. (2008). Parents labelled with intellectual disability: Position of the IASSID SIRG on parents and parenting with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 21(4), 296–307. Joint Committee on Human Rights. (2008). A life like any other? Human rights of adults with learning disabilities. TSO Ltd. MacIntyre, G., & Stewart, A. (2012). For the record: The lived experience of parents with a learning disability – a pilot study examining the Scottish perspective. British Journal of Learning Disabilities, 40(1), 5–14. Nicolle, L. (2023). Children of parents with a learning disability 54 times more likely to be taken into care. Retrieved June 6, 23, from https://www.learningdisabilitytoday.co.uk/children-­of-­parents-­with-­a-­learning-­disability-­54-­ times-­more-­likely-­to-­be-­taken-­into-­care#:~:text=The%20investigation%20 by%20Channel%205,as%20a%20factor%20of%20concern. Scior, K. (2003). Using discourse analysis to study the experiences of women with learning disabilities. Disability & Society, 18(6), 779–795. Walmsley, J., Ingham, N., Mee, S., Hamilton, C., & Harrison, S. (2015). Far more people were able to have sex lives: Sexual relationships and reproductive control in institutional care. In R. Chapman, S. Ledger, L. Townsend, & D. Docherty (Eds.), Sexuality and relationships in the lives of people with intellectual disabilities: Standing in my shoes. WTPN. (2021). Good practice guidance on working with parents with a learning disability.

8 Travel and Mobility Jan Walmsley and John Hersov

This chapter addresses Articles 9 and 20 of the UNCRPD, about access to transport and personal mobility. It starts with an introduction by Jan Walmsley followed by an account by John Hersov’s of how having access to public transport enabled students to attend regular Adult Education classes located in central London. The second section shows how an established self-advocacy organisation, My Life My Choice, developed a Travel Buddy scheme that over time has transformed the lives of many people with learning disabilities. Finally, two independent travellers from Building Bridges tell their experiences of travelling.

Article 9—Equal access to the physical environment, transportation, information and communications. Article 20—Right to personal mobility through provision of affordable aids equipment, assistive technology and personal support. J. Walmsley (*) Jan Walmsley Associates, Aylesbury, UK J. Hersov (*) Independent Facilitator/Consultant, London, UK © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2023 L. Tilly, J. Walmsley (eds.), Rights in Practice for People with a Learning Disability, https://doi.org/10.1007/978-981-99-5563-3_8

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Introduction The UNCRPD highlights the importance of individual autonomy including the freedom to make one’s own choices, to live independently and participate fully in all aspects of life in the wider community. For people with learning disabilities this has long been a battle, and indeed until recent times, more often than not they have been segregated, marginalised and treated as less than other people. When a group from London and the South East of England attended the 1st International Self Advocacy Leadership Conference in Tacoma, Washington, in July 1984, a couple of slogans resonated strongly: “Label Jars Not People” is self-explanatory and still widely quoted. On a more profound level, the view was expressed by some of the American representatives that self-advocacy was “the last civil rights movement”. This helped to concentrate the attention of UK staff in training sessions during the rest of that decade and beyond. Access to transportation on an equal basis with others is also cited in Articles 9 and 20 of the UNCRPD as well as “facilitating the personal mobility of persons with disabilities in the manner and at the time of their choice, and at affordable cost”. Technology, particularly apps on mobile phones, can transform people’s opportunities to travel. Maps at hand, help can be summoned, people can be tracked so that even if they believe they are lost they can be found. And the concessionary bus pass provided to disabled people in the UK through the Transport Act 2000 enables people with disabilities who are unable to drive, including a learning disability, to free or subsidised travel depending on the time of day and local area. In some areas the pass can also be used on local trains, metros and trams. It has proved a vital tool to independent travel, as these stories explain.

8.1 Mind the Gap! John Hersov with contributions from Dean Beach Here we describe how the personal mobility of people with learning disabilities in London has increased since the 1980s through better access to public

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transport services. This was the result of long-term liaison between self-­ advocates, supported by John, and Transport for London (TfL). As anyone who has used buses in London will know, the changes made to support disabled travellers—ramps, and audio and visual announcements about bus stops—benefit everyone. If you want to jump to freedom, mind the gap! So went the chorus of a song that the Music Workshop class at the City Lit Adult Education Institute wrote for the International Year of Disabled People celebrations in 1981. It refers to the public announcement on London Underground to “mind the gap” when boarding trains. Big developments have been possible in London since then because of the concentrated reach of its transport authority, Transport for London, different to the way services are organised around the rest of the UK. Transport for London (TfL) emerged in 1999 out of London Transport. Since 2007, people with learning disabilities have had their own forum within TfL—the Valuing People Network (VPN). This has provided self-advocates with regular opportunities to share their experiences of using public transport services with TfL managers and staff. In turn the TfL people have been able to tell the group about their latest plans to improve accessibility for everyone that uses these services. From my (John’s) experience of supporting self-advocacy work since the early 1980s, I chart the development of how people with learning disabilities in London have got their views across to the Transport authorities. The City Lit Adult Education Institute is located near Covent Garden in Central London and has been used by generations of Londoners. A programme of Creative Education workshops for adults with learning difficulties has been running (under different names) there since 1979, building on the original drive and vision of Janet Wyatt MBE. I taught “Speaking for Ourselves” classes on this programme from 1982 to 1998, which meant that I was able to get involved from the start in supporting the growth of the self-advocacy movement in the UK. Students at the City Lit were encouraged to choose their own classes (we didn’t register them until they had spent several weeks trying out a

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class that someone else may have signed them up to originally) and over time tutors negotiated the curriculum with the students. This meant that in my classes I asked them what they would like us to talk about and planned the sessions from this starting point. Some of our favourite subjects were: • What makes a good member of staff? • What do we think about social workers? • How we would like our GP to talk to us. I invited my own GP to come in and answer questions from the students which included “Have you ever made a mistake?” The principle of “enabling people to live independently in the community” was underlined by the students’ experiences of using public transport to get to the college from all across London. For many of our students, it was the first time they had ever travelled on their own. If they couldn’t read the signs, they took notice of the landmarks to plan out their journeys. It became a feature of the programme that when a student arrived on the day that they had made their first “solo” journey, the other students would applaud their achievement as they could all appreciate what a big deal it was. In fact, they were doing just what other citizens would do if they wanted to attend Adult Education classes of their choice. In the 1980s I also worked with the Mencap London Division Participation Forum—one of the first self-advocacy groups—which organised conferences in London and made videos of these events which were circulated around the country. Gary Bourlet, who was at the time I wrote this Membership and Engagement Lead for Learning Disability England (LDE), was one of the Forum’s members. Our London wide events drew people from Adult Training Centres (ATCs), Colleges, Hostels and other service providers.1  ATCs were where many people with learning disabilities spent their days in the later twentieth century, working for pocket money wages, learning independent living skills or just marking time. 1

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ATCs in London included Travel Training in their programmes. People with learning disabilities needed opportunities to travel independently with confidence wherever possible. Years later I spoke with the manager of a London Adult Training Centre who explained that some parents did not want their sons or daughters to learn to travel independently. They would rather still have them use Council Transport to come into the Centre and go home at the end of the day. The Participation Forum regularly discussed how well Public Transport services in London were working for people with learning disabilities. It also had meetings with managers from London Regional Transport (LRT)’s Unit for Disabled Passengers. At one of these meetings, in February 1985, a Forum member said that she did not like having the letter “H” for Handicapped on her Bus Pass. “We don’t like this, cos we get the mickey taken out on buses by schoolkids.” We talked about whether instead it could be a “D” for Disabled or “LD” for learning disabled, or a different colour to the passes for older people. The design of the Pass was eventually changed. Nowadays the pass is called the Disabled Person’s Freedom Pass. In the 1980s, people with learning disabilities could travel for free on the buses but only after 9.30am. The Disabled Person’s Freedom Pass can now be used 24/7 on all TfL services. In July 1985, the Forum also wrote to LRT’s Director of Press and Public Relations after a news item stated that LRT were planning to cut back staff on the Tube (London Underground). They made these points: We feel that this will prove very dangerous and may increase violence as there will be no one to turn to for help. It will stop a lot of people with disabilities, who sometimes need help with directions and getting on and off the trains, going out on their own especially in Central London. To put people’s lives at risk just to save money is wrong. We need more not less staff on the Underground.

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Looking back, I see a connection between these examples of the working relationship of the Participation Forum with LRT’s Unit for Disabled Passengers in the 1980s and the work Dean Beach and I have done with TfL since 2007, which started during the first stage of the Valuing People Team’s activities in London and in 2011 became part of TfL (Transport for London)’s work programme. The London Region’s Valuing People Team, set up after the 2001 White Paper Valuing People, organised regular Big Days for London for around 70 self-advocate members of local Partnership Boards, which I facilitated. At one of these events, self-advocates chose Transport as their main priority (after Hate Crime) to add to the Valuing People core principles of “Rights, Independent Living, Control and Inclusion”, [b]ecause without good transport we can’t go anywhere and do what we want to do.

We held a Big Day on Transport on 24 May 2005 and following this established links with TfL’s Equality & Inclusion Team. The first meeting of TfL’s Valuing People Big Day Network (VPN) was held in February 2007. I have been its co-ordinator since then. From the start, these meetings provided people with learning disabilities with the opportunity to talk directly to TfL managers and staff about their experiences of using public transport services. It also gave TfL staff the chance to explain their latest plans for making transport more accessible to all its customers. We discovered that lots of these staff were good at communicating ideas to our group and recommended that TfL build on this expertise within their workforce. By 2020, all London bus routes were served by low-floor vehicles, with a dedicated space for one wheelchair user and an access ramp. Buses could also be lowered to reduce the step-up from the pavement. By 2022, around 35% of Underground and Overground Train stations had Step Free access.

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This meant that they had lifts or ramps—or a combination of both— so that customers did not have to use escalators or stairs to move between the street and the platform. Because of costs, it has not been possible to convert all stations (some of which date back to the nineteenth century) to this way of travel, but it has meant that a wider group of people have been able to make their connections round London by train. The introduction of the modernised Elizabeth Line in 2022 also provided a big boost to all travellers (Fig. 8.1). The National Forum of People with Learning Disabilities was established in 2001 in England as part of the Government’s Valuing People strategy and funded by the Department of Health. It worked through until 2017 to enable the voices of people with learning disabilities in England to be heard by the Government. Dean Beach was involved in the VPN meetings from when they began in 2007. Originally, he represented the London Borough of Hillingdon at the Valuing People Big Days, after which he was elected as a London Regional Forum representative onto the National Forum for 3 years. Dean likes to go out and about and sees lots of things when he does so.

Fig. 8.1  Dean Beach and Belinda Powell wearing their “Please Offer Me a Seat” badges

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It keeps me alert to be able to go out in my local community. It gives me the confidence to carry on with my independence. I’m always out every day of the week (mostly) whatever the weather.

If he has to go somewhere new for a meeting, like many others, Dean likes to make a “dummy run” beforehand to check out the route. He is well aware of how hard it can be for some people to speak up in public meetings. It takes guts to speak up in a meeting if you are not used to it.

He underlines the success of the TfL VPN meetings over the last 15 years when he explains: The people with learning disabilities are actually involved because we are able to take part and influence the way TfL works. Without us, they would not know our views and experiences which enable them to shape the services they provide. I’m very proud to be involved.

He knows that he is doing all of this on behalf of others too. I’m fighting for their rights as well as what they are entitled to get.

VPN members, like many other Londoners, make most of their journeys on the buses. This topic has been a favourite for regular discussion at Network meetings and since 2012 the Network has developed stronger working links with the Bus Companies and bus drivers in particular. Bus Countdown screens which tell you what time the next buses will arrive at the stop were introduced across London in the 1990s and were positioned at over 2000 bus stops. As new technology has emerged, these displays use a liquid crystal format to provide fuller and clearer information. Audio messages were introduced on the buses from 2006 onwards. To start with, the announcements were mainly about the next stop. Then others were added: “Move Upstairs”, “No Smoking” etc.

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During the peak of the pandemic in 2020–2021, around 15 different messages were played, focussing on the precautions passengers should take in order to stay safe such as wearing masks and maintaining social distance. There are around 25,000 bus drivers in London working for 8 Bus Groups who have been contracted by TfL to service the bus routes in the capital. TfL provides regular training programmes for drivers and other Bus personnel. There was a turnover of around 7% of drivers during the pandemic, so the round of training that started in 2022 was especially important to influence these new recruits to adopt good working habits from the start. In their training TfL highlight the fact that a significant number of bus passengers might have invisible (or hidden) disabilities so that drivers should be careful not to make assumptions about them, e.g., he is shaking, so he must be drunk! In 2017, Steps Drama ran a training programme for TfL called “Hello London”, which got drivers to think about the different types of people who use bus services, and the extra need for support in travelling that some of them might have. The trainers used Forum Theatre techniques and role-played typical travel scenarios, e.g., the tensions that arise between wheelchair users and people with buggies as they compete for the use of the wheelchair space area on the bus. Dean Beach and I were invited to view some of this training after which Dean suggested that we invite the Trainers to present the wheelchair/buggy scenario at the next Network meeting. This proved one of the highlights of our sessions to date, as we spent the whole of the morning’s proceedings working through possible solutions/better actions by the driver with lots of suggestions from VPN members. VPN members returned to this subject with a list of recommendations for bus drivers which we have called Top Tips—find them at the end of this section. Another aspect of the Network’s contributions was to develop a programme of Awareness events in  local Bus Garages around London

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together with George Marcar MBE, Bus Driver Policy Implementation Manager at TfL. Saba Salman covered this work in The Guardian in the spring of 2018. https://www.theguardian.com/social-­c are-­n etwork/2018/apr/03/ big-­day-­network-­bus-­drivers-­accessible-­transport Between 2015 and 2020, we visited 15 garages. At these events members of the Network meet and talk with bus company managers and bus drivers “inside a bus”. In this setting, there is a real exchange of ideas and exploration of our respective roles as passengers and drivers. Both groups learn from each other. It has the practical advantage of being where things actually happen, rather than in a classroom. We can point to an item of the equipment on the bus and ask “Driver, when I press this button, what do you hear in your cab?”. This gives the driver the chance to say that they should be able to hear the noise it makes, but if it is broken they won’t be able to do this. They also may not realise it has stopped working, so it would then be helpful if the passenger went up and told the driver that they had been pressing the button. We emphasise that it is important to have this two-way communication in a respectful tone, so both people listen to one another rather than act in an aggressive manner. As Dean says, “It gives the drivers the experience from our point of view and puts them in our shoes”. I would add that we have gained a lot of knowledge about the driver’s own position as often they are on the receiving end of bad behaviour by some customers. During the pandemic, screens were put up round their cabs to keep them safe from the rest of us! VPN members have been given opportunities of sitting in the driver’s seat inside the cab, so that we can appreciate how sealed off they are from the rest of the bus. For some time now, TfL has been working hard with groups and individuals representing older and disabled Londoners, in order to keep on top of and improve accessibility to public transport services in the city.

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Sedley Wilson, the chairman of Disability Croydon, points out the great differences in bus travel nowadays. Before, there were loads of difficulties to get on the buses because they couldn’t drop the bus down for people like me that use a walker (never mind someone who is in a wheelchair!).

TFL’s Inclusive Transport Forum meets several times a year and provides opportunities for representatives speaking for these groups (e.g., Blind and Visually Impaired, Deaf and Hearing Impaired, Alzheimer’s, Parkinson’s) to talk directly to TfL managers about new Transport initiatives and introduce a sense of the reality for passengers to the discussions. The Valuing People Network is one of the groups that take part in these meetings which always provide new ideas for better access and communication from the perspectives of people with different sensory impairments. As with the experience of other forums over the years in different areas, it has been really important that TfL has committed to supporting a separate Network for people with learning disabilities to get their views heard. When TfL managers and staff come along to Network meetings to share their work, they are stepping on to the self-advocates’ turf. The tone of the meetings is set by the members who speak up with confidence and insight about their own experiences of travelling around London. As transport services in London emerged out of the shadow of the pandemic, TfL’s Valuing People Network will continue to play its part in building support for future accessible travel. As Dean says, There is space out there for ourselves mixing with the public. Beforehand, we used to go out with (support from) our carers, but when you live independently you’ve got to go out (on your own).

Since I started work in the 1980s, the opportunity to travel independently around the capital has meant that a large number of people with

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learning disabilities have been able to have more control over their lives than was possible before. We really are “bridging the gap”. Top Tips for Drivers • Pull up close to the pavement and lower the bus to pavement level—this helps passengers with mobility issues to get on and off the bus. • Allow us time to get on and off the bus. Keep the doors open longer & stop for longer. • Just wait for all people to sit down before you drive off, then you will get it right for everyone.

8.2 Travel Buddy Staff and members of My Life My Choice, Oxfordshire Travel Buddy is a travel training scheme that My Life My Choice started in 2010. Over 130 people with a learning disability have learnt how to do a journey on their own using the scheme. Adults with a learning disability, who can use the bus or train and travel on their own, can train to be a Travel Buddy Trainer. Once they are trained, they are paired with somebody who would like to learn a journey. They are paid to train them and they practice the journey together as many times as the trainee needs until they have learnt how to do the journey on their own safely. Trainees learn the route, how to cross roads safely and how to walk, get the bus or a train to a place they want to go. Research by Mencap has shown that many disabled people experience loneliness, as many as three-quarters aged between 18 and 34 report feeling lonely. Another study found some young people with a learning disability spend less than an hour outside their homes on Saturdays. Most people with a learning disability say they want paid work but research has shown that only 5.1% have a paid job. Travel Buddy helps people with learning disabilities to earn money and to travel independently which gives them more choice and control over their lives. When people can travel on their own they don’t have to spend money on taxis or ask other people to take them. It is also better for the environment when people walk or travel by bus or train.

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Travel Buddy Trainers like the scheme for lots of reasons. Dean says: I like getting out and about and meeting new people … teaching them the bus routes and railway routes. I feel proud. When I’ve done a good job, I feel like I’ve had a good day.

Pam says: It helps with my bills, I enjoy getting paid work … it makes me happy and glad.

In 2022, Marcia, who is 19 and had never travelled anywhere alone, learnt the journey from home to the town centre. She could get to the library by herself for the first time. Anup learnt how to use her local train to get to a Women’s group and Marianne learnt how to get the bus to her day centre so she doesn’t have to pay for taxis anymore. Two young people, Nick and Luke, learnt how to get to their work placements and 18-year-old Daniel is learning the bus route to his college. Keith had lost his confidence to travel on his own after the pandemic. He said: I hadn’t travelled for a long time. … I’d lost my confidence. I learnt to press the bell when I needed to stop and which number bus I need to get.

Keith can now get to meetings on his own and says it “feels fantastic!” Charlene (Fig.  8.2) had travel training and is now such a confident traveller that she has become a trainer herself. Charlene had wanted a paid job for a long time. For Charlene the best thing about the Travel Buddy Scheme is “helping people” and “getting paid!” Top Tips • Travel buddy proves that with time and application most people can learn to travel independently. • Often the barriers are the fears others have for a person’s safety. • Travel buddy is a great way for people with learning disabilities to contribute to other people’s wellbeing, and to earn money at the same time. • Travel buddy can save money for a self-advocacy organisation and its members—instead of paying for a taxi, a Travel buddy can help people to get to activities.

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Fig. 8.2  Travel buddy scheme—Andy and Charlene

8.3 Stories from Other Travellers Members of Building Bridges These stories are from two football supporters from Building Bridges who use public transport to attend home and away games of their teams. Satnam describes how his phone and apps help him to navigate and organise his journeys, whereas Trevor relies on remembering train times and meeting others. Satnam: Using Technology to Support Independent Travel I support 3 football teams: Tipton Town Team, Aston Villa and England. I go on my own to both away matches and home matches. I meet lots of people, and I see lots of other supporters who I have got to know; they are very friendly to me and sometimes buy me drinks and even meals. I don’t really get lost as I always have my phone with me. I use Google maps, even when I go to Europe. I have been to France, Germany 3 times, and Ireland. When I first went abroad on my own, I was really afraid as I didn’t know how to travel. No-one at the airport knew how I should to get to my hotel. If I got a train I could get off at the wrong stop and I can’t speak French. So I got a taxi and the taxi driver could speak English. But now I can use Google maps and I can use Google translate! So I used this when I went to Leipzig in Germany. I type where I want to go

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into Google translate. It took me ages to work out how my phone worked abroad, but when I clicked on data roaming then I could then use my phone. I can even get tickets on my phone now. I buy my tickets using my phone, and I pay with either my debit card or PayPal. Trevor’s Travels I am an Albion fan and a season ticket holder, I go to all the home and away matches. Recently I have been to Bristol and Luton. I meet the supporters coach at the local train station. I’ve made a friend who used to be an insurance man and we sit together on the coach. I can travel independently from my house on the metro, the trains and the bus. When I get back to the local station I usually go to the local pub and have a pint before I go home. I can’t read a timetable but I can remember the times of some of the trains. It means a lot to me to be able to go out and about by myself. Sometime I meet my friend Kraig and we go to the pub and watch a football game. I think all people should be independent like me. But if they don’t like travelling by themselves, those of us who are confident should meet them and we can travel together.

Satnam and Trevor’s Top Tips • Before you go out, make sure your phone is charged and learn how to use Google maps. • Google maps is the best for travelling as it knows where you are and takes you to the bus stop and tells you where to get off, and it tracks when the bus is coming. • Trainline tells you which are the cheapest tickets to get. • Have an Uber account in case it is raining or the buses aren’t running. It’s good as you don’t need cash; they take it out of your account at the end of the journey. • If you are nervous, try to find someone to meet up with to travel together.

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Conclusion These examples highlight the value of travelling independently to people like Trevor and Satnam. A partnership approach where those responsible for transport, like Transport for London, work with disabled people to improve services, combined with training programmes like Travel Buddy can be transformative. Satnam’s story points to the value of technology— how reassuring it is to have maps and directions on the phone. And rescue at the touch of a button if you do get lost.

9 Community and Culture Hazel Morgan and Nicola Grove

This chapter is edited by Hazel Morgan and Nicola Grove. It explores stories of people with learning disabilities being citizens within their community and having access to and influencing culture. The relevant Articles of the United Nations Convention on the Rights of Persons with Disabilities are 19, 22 and 30.

Article 19—Right to live and participate in the community. Article 22—Respect for privacy regardless of place of residence or living arrangements. Article 30—Right to participation in cultural life, recreation, leisure and sport.

H. Morgan (*) Trustee of People First Dorset, Dorchester, UK N. Grove (*) Independent Researcher, Horningsham, UK © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2023 L. Tilly, J. Walmsley (eds.), Rights in Practice for People with a Learning Disability, https://doi.org/10.1007/978-981-99-5563-3_9

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Introduction Since the 1980s inclusion of people with learning disabilities in mainstream life has been an ambition in many English-speaking countries. In the UK the King’s Fund publication, An Ordinary Life (1984), marked a major step in arguing for people with learning disabilities to be part of the community. The government paper (England and Wales) “Valuing People—A New Strategy for Learning Disability for the 21st Century” set out in 2001 the key principles of rights, independence, choice and inclusion, as did the Scottish white paper “Same As You” (2000). A group of self-advocates wrote a report at the same time, “Nothing About Us Without Us”. These policy pronouncements led to hope that lives would improve for everyone. The Mental Capacity Act (2005) provided a framework for people to make their own decisions as far as possible and the Equality Act (2010) which replaced the Disability Discrimination Act provided legal protection for people in the workplace and wider society. With this raft of progressive legislation and policy papers, for some life was improving. Then, following the austerity measures of 2010 the UK’s Coalition government, money for services was cut back. This meant reduced opportunities for many people with learning disabilities. For example, the National Forum of People with Learning Disabilities set up following Valuing People for people in England to speak directly to government had its funding withdrawn in 2017.1 Investigative journalism in 2011 and 2019 provided a reminder that some people with learning disabilities lived away from their communities. The scandals at Winterbourne View and later at Whorlton Hall, where people with learning disabilities in NHS funded assessment and treatment centres were being abused, shocked everyone. The fact that in England about 3000 people with learning disabilities were living away from home, often for long periods, prompted several initiatives. Building the Right Support asserted:

 In Wales and Scotland Governments continued to fund national bodies to represent people with learning disabilities at Government level—People First Wales and People First Scotland. 1

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We need to see people with a learning disability as citizens with rights who should expect to lead active lives in the community and live in their own homes just as other citizens expect to. (NHS England, 2015 1.3, page 5)

In 2015, the Green Paper, No Voice Unheard, No Right Ignored, stated, with reference to people with learning disabilities and autism: ‘They should have the same choices, freedoms and dignity as others’, which means ‘being members of their community, part of a family, having meaningful friendships and a social life, access to paid employment opportunities.’ (D of H, 2015 1.1, page 17)

A Building the Right Support Action Plan published in July 2022 (England) had a similar message. However, large numbers of people continue to live in hospitals or Assessment and Training Centres2 despite the recognition in policy for more than 50 years that all people with learning disabilities should be part of their local community. The Covid pandemic created further challenges. These are described in Sect. 9.1 “Surviving Through Stories”. Other external factors such as the war in Ukraine adversely affected the economy and wellbeing of citizens. Rising poverty levels disproportionately affect people with disabilities, something the United Nations pointed out in its Report of 2016, which condemned the UK Government for failing to protect disabled people (UN, 2016). The priorities and choices of Government impact on those who are vulnerable. Where there are cuts to public services people with learning disabilities are likely to become isolated within the communities where they have always lived; reductions to public transport, particularly in rural areas, make access to public spaces and culture problematic. People with learning disabilities from a range of different backgrounds and cultures may experience multiple discriminations, as highlighted by Paul Christian in Sect. 9.2.  In 2018 167 adults in Scotland lived in NHS facilities and 11 in independent hospitals (https:// www.scld.org.uk/wp-content/uploads/2019/12/Learning-Disability-Statistics-Scotland-2019.pdf accessed 8/5/23). In England in 2023 over 2000 people were resident in NHS or private hospitals (https://digital.nhs.uk/data-and-information/publications/statistical/learning-disability-services-­ statistics/at-february-2023-mhsds-december-2022-final# accessed 10/5/23) 2

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Surviving Through Stories comprises three sections: one virtual community who met online throughout the pandemic (Sect. 9.1), the work of Paul Christian to reclaim and share the stories of Black people, following the death of George Floyd (Sect. 9.2), and the work of advocacy group Brighton and Hove Speak Out to record people’s experiences of the Covid pandemic (Sect. 9.3). Section 9.4 describes the work of People First Dorset. Together these contributions show how people with learning disabilities can challenge the barriers they face and press for their rights as citizens to be upheld while contributing to local culture and their communities. There is a short contribution from Satnam Singh (Sect. 9.5) about his own culture and the choices he makes about where he belongs spiritually and culturally.  Finally Joe McGrath  (Sect. 9.6),  vice-chair of Ireland’s  National Platform of  Self Advocates,  reflects on his life and being part of the community. The projects we describe here show ways in which a sense of community can be maintained, local cultures influenced and challenges to discrimination made. These stories point to some ways forward to implement Articles 19, 22 and 30 of the UN Convention on the Rights of Persons with Disabilities.

9.1 Surviving Through Stories: Covid Experiences of Citizens with Learning Disabilities and Autism Vicky Green, Paul Christian and Danielle Garratt With Nicola Grove, Sue Ledger and Noelle McCormack. Background Covid-19 really hit the UK in March 2020, when lockdown started. In this section, Vicky Green, Paul Christian and Danielle Garratt, self-­ advocates from different organisations, describe their work during the pandemic. They worked with academic partners. They then agreed it with other people involved in Surviving Through Story.

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Surviving Through Story This online project started in April 2020 to help us be closer together. I (Vicky Green) joined at the beginning because I wanted to get the stories out there, whether they were good, bad, sad or funny. A big problem was that the voices of people with learning disabilities and autism were not being heard. We were seen as a “vulnerable” group, but our rights were affected. Some dark secrets were uncovered: • We were not prioritised for vaccines until there was a campaign in the media. • “Do not resuscitate notices” (DNACPR) were used in hospitals for many people with learning disabilities as though our lives were not worth anything. • Our mental health was affected. But we stayed strong. Some people with learning disabilities worked in front line jobs (like supermarkets and the post office) and volunteered to help neighbours and friends and take around food parcels. These stories never got on the media. Eight self-advocates and 5–6 regular supporters met each month to run Surviving Through Story. Without Zoom we couldn’t have done it. We supported each other and used our networks to include people who did not use technology. We were open to each other’s ideas. Our Stories We collected written, picture and film stories. Some people told their stories for others to write down. Sometimes families or carers sent stories. It was difficult to get stories from people with high support needs and from care homes. A very important page was Celebrate a Life. It was a place for expressing grief for those who sadly passed away. Two of our members lost their partners. We got a lot of interest. By December 2021 over 5000 people had visited our site. We gave conferences, provided training and talked to other organisations. This helped us develop our ideas.

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We have picked short extracts from three stories from the Surviving Through Story site that relate to UN Convention articles. You can see the longer versions on the website. (https://www.survivingthroughstory.com/ video-­stories) Article 19: Living Independently: Lee’s Lockdown Christmas Lee lives independently, and this time was tough—but his strength really shines through. Mostly I been self-isolating and shielding throughout Christmas, you know, and trying to enjoy Christmas where I can, finding it tough. Christmas Day I was opening one or two presents. … I didn’t get that much … but I did wear a Christmas jumper. … My mum came over and picked me up. Just for one day. And I felt better, and I enjoyed it, and I had a great Christmas.

Article 22: Expressing your Views: Why Are Our Voices Being Ignored? Terry spoke on behalf of us all, about the media ignoring our views and achievements. Many people with learning disabilities are being left out … why can’t someone like me put a question to the Prime Minister? Why aren’t the media talking to people like us? Why are our voices being ignored?

Article 30 Access to Information: Louise’s Story, Following the Rules Told with her parents, showed how a person with severe learning disabilities can understand and provide information. Louise’s words are in bold.  At first we were told to Stay. At. Home. But then you went back to college, and now you say ...Wash. Your. Hands. And you also say... Give. Me. Space. And wear a.. Mask (Louise puts on a mask).

Article 30: Participation in Culture, Sports and Leisure Pandemic Positivity: how arts and sports organisations kept connected and stimulated creativity.

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Rupert tells how he kept fit with support from his online sports group. When you are at home for a while you get very very miserable. … But I thought to myself, I’m not really housebound, I just need to get out. I was outside in the garden keeping my head occupied, strimming, mowing, cleaning the beach. It relaxes your mind. I did the Ben Nevis challenge, it’s going up the steps about thirty times. I thought—I’ve done something good for myself. Try new things.

Our Achievements We stepped into the gap when people with learning disabilities found themselves on their own. We kept people’s spirits up and did things we never thought we could do. We talked about who has power in our society. What happens when your rights as a citizen are taken away? This happened to many people, during lockdown and at other times. Member Susie Gentry says Our website gave a voice and helped other people to understand what it meant to be a person (a citizen) with learning disabilities.

We express our thanks and gratitude: • The Open University, which funded the site • Generate and the Rix Centre, University of London, for administrative support and site maintenance

9.2 Black Lives Matter Too Paul Christian (Photo 9.1) Paul Christian writes here about the need for leadership when it comes to the lives of Black people with learning disabilities. After the brutal killing of George Floyd in America in May 2020 all the team wanted to support the Black Lives Matter movement and do everything we could to tackle racism. We wanted to make sure that our

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Photo 9.1  Paul Christian—researching the life of John La Rose, my inspirational leader. Here I am standing in front of a statue commemorating his work

website included the experiences of Black people during the pandemic, coverage of what had happened in America and the protest that followed in the UK. As we are from a mix of Black and white backgrounds it was important we worked closely as a team to challenge racism. My leadership role with Surviving Through Story included writing new pieces for the site—e.g., I can’t breathe, my response to the killing of George Floyd. I made conference presentations, researched Black history and have now set up new projects in support of Black Lives Matter (Christian & Ledger, 2022). I am building networks with other Black activist and inspirational leaders. I think it is really important for younger citizens with learning disabilities to see people like themselves as leaders.

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9.3 Brighton and Hove Speak Out Covid Stories Speak Out with Danielle Garratt I was an outreach project worker for Brighton and Hove Speak Out when the Covid pandemic arrived, and everything changed. Overnight I found myself working from home. My outreach visits ended abruptly, and I had to find new ways of working. I began advertising Speak Out services online, on social media, and updating information on our website. I had to establish a new working routine. A colleague suggested that I interview people on video about their Covid experiences. That is what I did; I called it Speak Out with Danielle. I interviewed people with and without learning disabilities. I taught myself new skills— • • • •

deciding what questions to ask; how to write formal emails of invitation—some to people I didn’t know; how to use Zoom; presentation skills and video editing.

In no time, I went from outreach work with local people with learning disabilities to reaching people online as a video blogger. It was scary at first, but I had to get on with it, and gradually my confidence grew. I heard about the Surviving Through Story project from my personal assistant and she suggested I upload my Speak Out with Danielle films to the website. I watched the amazing stories other people had shared and it made me want to create more stories. Because of the skills and experience I had developed I joined a year-­ long project to record the Covid experiences of people with learning disabilities in Brighton and Hove. The aims included finding the stories of people who had been isolated, who had little or no access online, who had lost touch with Speak Out and people who may have never had contact with advocacy. We interviewed people who lived in care homes, in Supported Living, in Shared Lives, with families and on their own. We let

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people know that Speak Out was there to support them, to hear their stories and to encourage them to come back to face-to-face meetings. We recorded 25 people, about their lives before Covid, how their lives changed during lockdown, what a typical day was like, what helped them get through and what it was like going out again when lockdown eased. We heard stories about loneliness and anxiety. Being Alone Hannah’s Story Before Covid Hannah had been very active in Speak Out. She helped set up a political campaigning group “Being Heard in Government”, and was always the first to volunteer for a new project. During Covid she disappeared and no-one knew what was going on. When we interviewed her we found out that she had been stuck in her room alone. She let her phone go to voicemail so she could listen to another person’s voice over and over. She’d moved several times and the people supporting her didn’t know anything about her self-advocacy work. Hannah had tried to join meetings on Zoom, but didn’t have enough support, so she gave up. She let the weekly phone calls from Speak Out go to voicemail. Speak Out had thought she’d changed her phone number. After the interview Hannah was “buzzing” about being back and began campaigning again and coming to different groups. We were shocked and sad about what she had gone through on her own. Her story stayed with us for the rest of the project. Listen to her story here: https://www.bhspeakout.org.uk/covid-stories/ What We Learnt from Surviving Through Story Everyone missed seeing friends and family, especially people who lived on their own. Though many people had a tablet, they either couldn’t work out how to join Zoom meetings or just found meeting people online too difficult to deal with. People found it difficult to start going out again. Sarah felt she lost her independence and had to start from scratch to build up her confidence going out on her own.

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We heard about new routines to get through the day, like doing keep fit, cooking and going for walks. Matthew kept a journal. Hannah re-­ discovered activities she hadn’t done for years, like loom banding and knitting. It was sometimes upsetting hearing what a difficult time people have had, but it was also very moving to hear about how strong people were and how they had made it through. Our evaluation showed that project interviews were the first time people had been given the opportunity to do this kind of thing, and they want to do more, and not just about Covid, but life story work in general. Art Workshops After making the recordings we ran some art workshops for a small group of our interviewees. They were a way of bringing people back together and giving them an opportunity to explore their experiences of the Covid pandemic creatively. People made posters and boxes to represent their lockdown worlds. The boxes were time capsules to share what people had lost and gained and learned during that difficult time. The artwork was shown in an exhibition called “Lockdown the Lost Years” in the main library in Brighton in 2022. It invited members of the public to learn more about the experiences of people with learning disabilities and about Speak Out’s work. For me, the work has given me confidence in my ability to empower others. I want to support people to have the opportunities I have had. Conclusion Projects like these demonstrate just what can be achieved when people with learning disabilities take the lead. To celebrate our collaboration, the whole Surviving Through Story team headed down to see Brighton and Hove Speak Out’s wonderful exhibition. But our work is not done. We are looking for somewhere to save the stories, a permanent public record to make sure these experiences are never forgotten.

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• Visit Surviving Through Story at https://www.survivingthroughstory.com • Brighton and Hove Speak Out’s Covid Stories Project • https://www.bhspeakout.org.uk/covid-­stories/

9.4 Building Community People First Dorset: Richard Maxfield, Emily Burr, Ellie Crawford, William Parmiter, Kerry Martin, Chris Harvey, Tessa and Mike Hellin. Supported by Hazel Morgan and Laura Kerr. People First Dorset is a user-led charity. Our values link to three rights within the UN Convention: Living independently and being included in the community (Article 19); Freedom of expression and opinion, access to information (Article 21); Participation in cultural life, recreation, leisure and sport (Article 30). Making and sustaining friendships in community settings, enjoying local cultural life and recreation is one of our main activities, in line with Articles 19 and 30. We learn about rights and develop skills to speak up, enabling us to exercise our rights as citizens as set out in Article 21. People First Dorset is not a service provider. It means we are independent and open to everyone with a learning disability to join our activities, which are almost always free of charge. People First Dorset has different ways to make sure it is led by people with learning disabilities: • People with learning disabilities are employed in our staff team. • A member-led Management Committee sits alongside the trustees. • One of our six trustees has a learning disability. We have two main projects: Speaking Up, which started in 2004, and the Friendship Club, which began in 2008.

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The Friendship Club Beneficiaries of People First Dorset’s projects chose to be known as members. In line with being user-led, we members choose the Friendship Club activities, with quiz nights, skittles or bingo in a local pub being particularly popular. We also enjoy history and ghost walks; picnics and games in the park or on the beach; and we’ve even set up a fun choir group in a local church hall (Photo 9.2). One of our members’ favourite events is a bi-annual “Big Night Out” nightclubbing event in Bournemouth, where around 500 adults with learning disabilities meet and dance to music from DJs with a learning disability. When we took part in a local carnival, we got to make and carry a giant caterpillar through the town! Another fun project was working with poet

Photo 9.2  Tessa singing with friends in our People First Dorset Choir

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Johnny Fluffypunk to create our own poetry raps, which we performed in a Dorchester café, and at Bournemouth University. We like it when people with profound and multiple learning disabilities come along, and they most enjoy the discos and summer picnics. Going to Friendship Club means people in the local community get to know us. It feels good when they recognise us and say hello. In fact, it’s been life changing for many members. William explains: Take me, William, for example. I first came to the Friendship Club in 2008, soon after it first started. I had no friends before and used to go to the local bowling centre to drink beer and try to meet people, but just became lonelier because I didn’t know how to make friends. My community nurse suggested I try this new Friendship Club, and I have never looked back. I now have lots of friends and meet up with them outside People First Dorset activities. I really feel I am part of the community now, and people like me. Two years ago I joined the Management Committee, and since 2015 I’ve been writing a weekly column in the Dorset Echo, now with my friends Kerry and Emily. It’s great as we can write about anything and everything! We’ve covered everything from politics, Brexit, prison, accessible spaces, friendships during Covid, running the world and the environment to smelly jobs, kindness, lying, litter, losing things, designing a supermarket and sandwich fillings! I felt very proud to be nominated by People First Dorset to attend a Garden Party at Buckingham Palace. It was a special day, and I loved seeing the gardens even though it rained.

Environmental Projects Over the last few years we are all hearing more about global warming, and we wanted to understand it better. So, over a number of weeks, we were lucky enough to take part in our own project, led by an environmental community arts facilitator, who helped us do just that! Here’s some of the feedback from members: I can use art to express myself when words seem too much. I use art to express how I feel outside of the environment project now.

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I know more about recycling now than before, I re-use plastic bags when I go shopping and I check each packet before throwing it in the bin. I can use art to understand important topics. The project made me realise how much I didn’t think about the environment before and learn what I can do to help. It has changed the way I live my everyday life. I now recycle more, avoid single-use plastics and I think more about how us humans impact the world. I think more about switching off lights now.

Another great project was just after Covid ended, and we were asked to join in with a national community arts project called Green Space Dark Skies. People from all over the local community came together at dusk, creating magical moments at Maiden Castle, an enormous ancient hillfort on the outskirts of Dorchester. The following week we helped plant saplings for a new community orchard in town. Doing stuff like this are great opportunities to be truly part of our community. Speaking Up Groups We have 12 Speaking Up Groups across Dorset, where all the topics discussed are things which we often find difficult and need a bit of support with—like money, housing, health, employment, online safety, keeping safe, annual health checks. In 2016, with a grant from NHS England, we visited health settings (GP surgeries, local hospital) to assess how easy it was for people to access them. We wrote a big report and made a film about what we found, with recommendations for improvements. In 2017 we took part in a brilliant project with Weymouth College, Remix (a local inclusive youth performance company) and the Prince’s Trust to write a song and make a film about what it feels like not to be included. Do watch it on our YouTube page: https://www.youtube. com/@peoplefirstdorset623/videos.

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Other things we’ve done include workshops on how to manage money, with support from a local supermarket and bank. We’ve held women’s and men’s groups where members learn about things like why it’s important to have a cervical smear (for women) or check your prostate (for men). Being Heard at a Local Level It is a priority for us that the voice of people with learning disabilities is heard at a local level. Members have an annual meeting with the Chief Executive of Dorset Council, and some of us sit on the Local Authority Health Action Group, the Learning Disability Partnership Board and an Equality and Diversity Forum. In 2018 our MP came to a local café where many of us shared our worries—finding suitable housing, getting a paid job, healthcare and getting support. He invited us to London for a look around the Houses of Parliament. It was a great day, helping us deepen our understanding of politics and how the country is governed. Covid Covid brought challenges. Many of our members needed information, and fast, about what to do, how to understand the changes to rules and help with managing at home alone. The People First Dorset staff team contacted every member to find out what they needed, and they provided easy read information about Covid, vaccinations and social distancing; online groups which helped us keep in touch with friends; regular phone calls to people who preferred them to online. The staff team also created, and still send, a booklet called Connect, which is posted out every month. In it, there are games, puzzles, message boards, information, activities, jokes, news and more! Top Tips • If there is a group like ours in your area, then do join it! If there isn’t one, can you find people who might help to set one up? • If you work with people with learning disabilities, maybe think about what you can do to help people with learning disabilities make friends and truly feel part of their community.

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9.5 Sikh and Christian: My Experience of Going to Two Places of Worship Satnam shared his story with Liz Tilly about being part of two faith groups in his local community. For many, being part of a faith group is an important part of being an equal citizen, the right outlined in Article 19—the right to live and participate in the community. He shares how being part of these two communities is a positive experience for him on so many levels. Being a Sikh and attending temple is part of his heritage and identity as an Indian Sikh man. As a person with a learning disability he has acceptance and is included in local activities and organisations. They are both places of welcome and the temple and the free food is much appreciated. As Satnam lives alone he is able to enjoy home cooked curry, which he cannot make himself. In both places he has friends and connections. He enjoys the annual celebrations of his Sikh faith. He also shares how with rights comes responsibility—you need to “follow the rules” of any community group to be a member. And finally he talks about the role of prayer in his life, and how this has helped him to overcome anxiety of travelling to new places. It helps us to understand the importance of enabling people to participate and be an equal citizen in their local places of worship if this is their choice. And it explains the many benefits this can have. Satnam Singh My experience of going to two places of worship I was bought up as a Sikh and I wanted to continue as a Sikh. But I also go to the Christian church sometimes as I knew the people who went there so I started to also believe the Christian things. I got two religions. Going to Church It is a good thing to become a Christian. Nice people at the church where I have been. I have also been to other churches in other places, like Wolverhampton. Being a Christian is still a good thing whether you

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believe in it or not, and Jesus can still help you. He helped me a number of times from prayer. Even though I don’t go to church anymore I still pray to God I do. In the past I was scared to go to new places, but now before I go, I say my prayers to Jesus who keeps me safe and out of danger. Jesus also helped me in similar things but it’s too long to explain. Going to the Temple Sikhs all began with a man name Guru Nanak in the north of India where I am from. That’s why most of the Sikhs speak Punjabi as they are from the north of India too. There are about 10 Gurus who we usually worship. Sikhs go to the Gurdwara which in most places is open all day from 4am in the morning to 9pm where they can come in and have dinner, drink tea and chat. At the temple I have to take my shoes off, put them on the shelf and put a cloth on my head. Then I go to the kitchen and have a dinner. You don’t have to be a Sikh to have a dinner. There is no meat in the meals, just vegetable curry, cups of tea and soft drinks. I like talking to everyone. There, people there treat me like everyone else. As long as you behave yourself, you can go anywhere. It’s the same as at Aston Villa! Everywhere has their own rules. During the year we celebrate Vaisakhi, we celebrate the birthday of Khalsa—that’s in April when Sikhs have food and drink and shows all over the world. Diwali is also another celebration when we have fireworks at night and food and drinks each year in November and when we also light candles.

9.6 “It’s about contributing to society” Joe McGrath Joe was first chair of Ireland’s National Platform of Self Advocates. Here he reflects on his life. He praises teachers “who had a real interest in us”, describes how he has contributed to and felt part of different communities through music, through setting up a coffee shop and through his work with

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Universities: not to mention high-profile campaigning around Ireland’s Assisted Decision Making legislation. My name is Joseph McGrath. I’m 54 years of age. I’m vice-chair of the National Platform of Self Advocates. I’ve also worked part-time these past 21 years at SeedSavers, a horticultural company in Scarriff, my local town in Co. Clare. We sell and preserve native species of plants, vegetables and fruit trees. I was recently appointed their Disability Access Officer. I’m the second youngest in a family of five. I have a sister younger than me. My father died when I was three years of age. I went to the local school in Bodyke for a few weeks. My brother Paddy was there. I would go to Ennis to see a physiotherapist on account of my cerebral palsy. She recommended, A, a special school for slow learners. There are several people in my locality who went there. We travelled in and out together on the bus to Ennis. The journey took a long time. Getting up at 7 you mightn’t drive into school ’til 9:30. There were 15 or 16 of us in the class with all sorts of ability ranges. We did classes like woodwork and metal work. I didn’t do metalwork because of my eyesight. The flashes would not have been good. There were one or two teachers who got the better out of me. O___ was able to explain things to me to make them easy so I could understand. He gave time to each student and so did Mr W. There were a few people who knew I was interested in music. If I wasn’t in the classroom they’d find me over by the piano. I wasn’t much good at playing but I had good memories of going to that school because they knew I was interested in music. They sent me out cleaning up the grounds outside and paid me and that money bought me my first tape recorder so I could go out and buy tapes. And I learnt a lot from being with my family. My brother-in-law bought the pub Shortt’s Bar in Feakle in 1996 and Tommy Hayes, a member of famous Irish folk band Stockton’s Wing, one festival time had thirty bodhran players in there. Someone had a pair of spoons and I went to Custy’s music shop and I bought myself some. I self-taught myself with tapes I had at home. People often told me I had the rhythm and I have those rhythms to this day. The teachers had an instinct, that I loved

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music. We didn’t have many musical instruments when I was there but they encouraged music in that school. Some of those teachers had a real interest in us. I’ll give you a serious example. There was a Mr O’M he bought up the sad subject of death. I said I was put in an incubator at a very young age because of a lack of oxygen to the brain and I told him I was a half twin as well and my twin, named Dominic, died at birth. Maybe if that hadn’t happened and both my twin and I would be here today and I’d have had a more normal life. There was an older lad beside me and by the time I’d finished telling my story he was a ball of tears. The teachers didn’t sugarcoat it for us. They got us talking so we could cope with things. Like I was called names at school and the more they called me names the worse it would get, “Bandy legs, bandy legs” and that wasn’t the worst of it, but when we played soccer together we had some great times. I had some physical restriction in my movement but that was only a problem when people thought I couldn’t play. They thought I’d fall over. I’d be a strong tackler but all through my sporting career there was one thing I’m certain, I never broke a bone nor did I break anyone else’s. I played with the school team and later on I got involved in Cerebral Palsy sports competitions. I went to Nottingham and did discus, shot put and javelin and the 100 and 200 meter races. And later through the Brothers of Charity I represented my country in the Special Olympics and was captain of the Irish soccer team. At school there were no state qualifications. But that school taught me how to read and write. That school taught me how to do a lot of things. Special education had its place. If I was growing up today and I was going to mainstream school I wouldn’t be separated from my community, that’s where a lot of people now are different. I never went to a graduation dinner dance, nothing like that. If I was in the mainstream school now I probably would still feel a bit different because I was in maybe a special class. I do think, if right be right and we had the support back then they have now, we would be better educated. I’m lucky in that I can manage money and the teachers in the school knew me very well and got the best out of me. It was hard in there but I survived it and a lot of the children I know who were with me have turned out okay I think.

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Being able to read and write and do sums and that is good. I mightn’t be great to add up but I could use a calculator. And the music: I was lucky that all through my childhood I met up with some great musicians. My brothers and sisters would bring me out to places where they played music. We all got on together but we’d also fight like cats and dogs! I left school in June 1986 and I went to the Rehab training centre (for people with disability) in Limerick to learn upholstery. But when I got there they told me the upholstery tutor had left and asked would I go down to the canteen section. I stayed there till 16th of March 1990 when I moved to Ennis and the Brothers of Charity. What decided me to leave was the travelling up and down. Living out of a suitcase and being away from home. I was in digs in Limerick. My brother used to drive me to the bus at 6 o’clock in the morning and in the winter I used to stay in digs in Limerick. A landlady used to provide bed and breakfast for me. People from the local employment scheme also lived there. Not people with disability, ordinary people. The thing about inclusive education is that with everyone in the same class there’s a chance the slow ones will delay the development of the quick ones. If someone is putting the time into the slow ones then that’s delaying the time given to the brighter ones in the class. They will be delayed in getting the grades and moving on. But if you put in a special teacher (a Special Needs Assistant) in an ordinary class assigned to certain pupils to give them a helping hand they can tell the story of what help is needed to change things for the child with a disability. If a person has an interest in say music and the teacher is also interested in music then that would help get them comfortable. Then if I meet you socially outside of the school, I’d feel comfortable to play music alongside you, get to know you and understand you better. If I make that connection with somebody they may say “I can link you up with this or that person” and that way you get more involved in your local community. And then it’s left to that person to build up a rapport or a trust with people around you. Their awareness of you and your awareness of them will grow. Instead of focusing on what is wrong with you they’ll be focusing on what you’re able to do. It’s not about whether you have a disability or not it’s more

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about how well you’ve been educated to join in and what you can contribute to society. When I moved into the Brothers I was upstairs for a while doing the communion breads (sheltered work employment). Then I went to the woodwork section. I was set up on the machine drilling out bases for a cot. Another lad caught me one day there and pinned me up against the wall we were messing and I said something and he just wouldn’t let go of me. I couldn’t fight off his strength I was totally exhausted after it. I’ve seen a number of fights in school and in the Brothers and in Limerick. School could be a dangerous place. I remember a boy one day put a rock through a window from outside the school. I caught a lad next to me and we hit the ground together. The teacher was furious. Now it might be because there were so many people in the class altogether over a long period of time. Personally, I think, if it was organised more like a work scheme where people go in and get trained and then move on, that’s a better way. Because of the tension between individuals, because there was every level of disability we didn’t know how to stop fights being triggered off. More of us just got caught up in the middle of it. Parents and the service (support) people would get into a comfortable state with having people in these training centres. People got to know their staff, started feeling comfortable. Then when those support people left they’d get in a terrible state, feel abandoned like. I can’t for the life of me understand why we don’t support people to be in their own communities and put the supports in there in smaller groups and people would feel much more comfortable and get on better … feel more connected. Myself and Brian opened a coffee shop in Scarriff with support from the Brothers. It was Brian’s idea but because I had worked with my brother in the pub and had some bit of business sense behind me, doors started to open up. The advocacy work I did back then was making a film about my work that was brought to United Nations when they were looking for examples of people living meaningful lives to create the CRPD about disability rights. Then the service supported us to go on Inclusion Europe trips. I

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ended up going out to Paris and to Prague. I have great respect for everyone for putting the time and resources into individuals and getting us out to those things. It was later I came to do the research work at the University of Limerick and went on to mentor other students on that course. After that I worked with Martina Nealen at Limerick Institute of Technology. So I have graduated along the way and met people who have opened up my horizons. I’m linked with Emma Byrnes and Eleanor Flynn at Galway University co-tutoring service support staff about the Assisted Decision Making Capacity Act after I had been involved in debating it in the Seanad (advisory chamber of Irish legislature). My work helps to educate staff so that can tell people about their rights, support their access to education and will I hope bring people along as quickly as possible. I have become an outspoken leader, good at getting my point across. In fact I now quite often am sent clips of film where my name is quoted in Dáil Éireann (the main Irish legislation chamber). I feel very proud and thankful I’ve had these opportunities. So you see where ever I went whether it was doing music or advocacy or research, where someone had some patience with me to teach me something even though they might not have thought I was picking it up I learned with my eyes and my ears. I may not have always read it out of a book but if you taught me something and you took your time and explained it to me, I had it. At the end of the day I believe education is really a community thing. It’s all about having a broad range of experiences. If you’re out at work, if you have interests, you will meet different people from different walks of life. You get a better idea about what’s going on, what’s acceptable. I’ve been lucky I’ve been in the Brothers, I’ve been in Rehab in Limerick and then I was out at work and involved in the National Independent Advocacy Platform and the inclusive research thing and travelling abroad. I went to the bank yesterday and they said there’s music in Jacko’s tonight and I went in for a pint and I saw them setting up and I stayed around and I enjoyed the session and I joined in; played my spoons, sang a few songs.

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Conclusion These stories tell tales of inclusion and belonging, and the importance of being part of one’s local community. Involvement can be a positive and affirming experience, enabling people to have an identity other than being a “service user” or just a person with a learning disability. For some people it is important to be part of the community of people with a learning disability, for others being part of mainstream life. And some, like Joe, move fluidly between different communities, from the Dail Eirann to the music in Jacko’s. All the stories demonstrate the importance of reciprocal roles in community life.

References Department of Health. (2015). No voice unheard: No right ignored – A consultation for people with learning disabilities, autism and mental health conditions. https://assets.publishing.service.gov.uk/government/ Kings Fund. (1984). An ordinary life: Comprehensive locally- based services for mentally handicapped people. archive.kingsfund.org.uk The Local Government Association, Association of Directors of Social Services and NHS England. (2015). The National Plan Building the Right Support (1.3 p 5) ld-­nat-­imp-­plan-­oct15.pdf (england.nhs.uk) United Nations Convention on the Rights of Persons with Disabilities. (2016). Inquiry Concerning the United Kingdom of Great Britain and Northern Ireland carried out by the Committee under Article 6 of the Optional Protocol to the Convention: Report of the Committee. Geneva: United Nations. Available at: www.ohchr.org/EN/HRBodies/CRPD/Pages/InquiryProcedure.aspx [last accessed 21.2.2017]

Further Reading Bartlett, T., et al. (2022). Surviving through story: Experiences of people with learning disabilities in the Covid19 pandemic 2020–2021. British Journal of Learning Disabilities, 50(2), 270–286. https://doi.org/10.1111/bld.12463 Christian, P., & Ledger, S. (2022). Being part of history, being part of activism: Exploring the lives and experiences of Black people with learning disabilities.

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British Journal of Learning Disabilities, 50(2), 239–251. https://doi. org/10.1111/bld.12459 Cronin, P., et  al. (2020). Peter & friends talk about COVID-19 and having a learning disability and/or autism. Penge Publishers. Gentry, S. (2022). ‘Life after losing Ronnie’. Community Living 7.7.2022. https://www.cl-­initiatives.co.uk/life-­after-­losing-­ronnie/

10 Work and Money Jan Walmsley

This chapter is about the right to work on an equal basis as others in the same community, and so benefit from the income and opportunities that this enables. The introduction is written by Jan Walmsley and has contributions from Barod CIC, Cardiff People First, both from Wales and from George who is in paid employment.

Article 27—Right to work on an equal basis with others. Introduction This chapter includes strong examples of people with learning disabilities who are employed and paid a decent wage. This is rare. In England, figures showed that only 5.1% of people with learning disabilities had paid employment in 2020/21, a decrease from 6% in 2014/15, and that women are less likely to be in paid employment than men (4.4% in

J. Walmsley (*) Jan Walmsley Associates, Aylesbury, UK © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2023 L. Tilly, J. Walmsley (eds.), Rights in Practice for People with a Learning Disability, https://doi.org/10.1007/978-981-99-5563-3_10

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2020/21, Nuffield Trust, 2023). It is assumed that the situation in other parts of the UK is the same. So the people featured here are very much an elite. Survey after survey shows that getting a proper job, with a wage, is high in people’s aspirations. It has long been a policy aspiration too. Valuing People (Department of Health, 2001) the White Paper expressing policy for England and Wales stated: We believe that employment is an important route to social inclusion and that all who wish to work should have the opportunities and support to do so. (paragraph 7.50)

Low expectations, the benefit trap and difficulties progressing from supported employment schemes were blamed for the low numbers of people in work (para 7.52). Similar policies have been espoused in the devolved nations: for example the Learning Disability Improving Lives Programme (Welsh Government, 2018), Keys to Life: Improving quality of life for people with learning disabilities (Scottish Government, 2013) and Equal Lives: Review of Policy and Services For People with a Learning Disability in Northern Ireland (Department of Health, Social Services and Public Safety, 2005). Twenty years later, none of the barriers  mentioned above have vanished and the evidence in the contributions here shows that clearly. Work and employment have long been a vexed issue for people with learning disabilities. Being able to hold down a job and earn enough to keep him or herself did not prevent women like Mabel (pseudonym) from being institutionalised. Mabel was a London girl with a decently paid job in a brewery when, aged 18 (in 1938), she became pregnant. As a result, she was pronounced to be ‘feeble-minded’, to have a mental age of 7.7 years and to require care, control and supervision for her own benefit. Her family was indignant—notwithstanding this she was taken away from her home and placed in an institution in Hertfordshire.1 Being able to earn her own living counted for little.  Pieced together from case notes.

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In the 1930s ‘Stephen’ was a resident of a hospital in Bedfordshire. When the war came lots of residents were let out to make space for people wounded in the war. Stephen got a well-paid job in a local factory. These two examples illustrate the role that paid work plays—it is by no means straightforward. Within institutions patients were expected to work. In laundries, caring for younger and frequently more significantly disabled people, in sewing rooms, basket making, farm and wood work. Grace, former resident in a Yorkshire institution, described her work: We used to scrub those wooden floors with steel wool, used to get all in your hands … It’d come up beautiful after but it were hard work. … And we used to have to get coal and coke in until teatime. You had to put it on big shovels and shovel it into ‘hole’ where it used to go. (Potts & Fido, 1991 p. 74)

This was unpaid work. Grace’s colleague Elsie, remembered No, we didn’t get any money, not in them days. We got sweets. (Potts and Fido, 1991 p. 75)

Potts and Fido who conducted the research with former residents of this institution speculated that work was a version of atonement or, sometimes, punishment. More than one former resident remembered being made to scrub floors with a toothbrush as a punishment for a misdemeanour. There is also a sense that this is a way of defraying the costs of the ‘care’ people received. The decline of institutions in Britain coincided with the ending of unpaid patient labour. This arguably made them too expensive to sustain in anything like an acceptable state. As large institutions closed, community facilities called Training Centres opened, and many people with learning disabilities attended 5 days a week. From the 1960s to the 1980s (sometimes later) such places took on contracts for trainees to work. The work included simple assembly work, horticulture, laundry and sometimes wood or metal work. It was a 9 to 5 existence for those capable of doing such work, with very little—if any—remuneration. There is nevertheless evidence that some people appreciated this more than the training in independent living

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skills which replaced it. Paid work disappeared because it became viewed as exploitation (Walmsley, 2006). Now the call is for real jobs. It is a paradox that the modern version of work as a good thing remains so elusive. There are examples from other parts of the world which show that a different approach makes paid employment a more achievable goal, though at a cost. In Japan, 20% of people with a learning disability work in the regular labour market, compared to under 6% in the UK. This comes at a price. Long hours, mostly humble employment. Employment protection does not extend to the welfare employment sector, so no minimum wage or restriction on working hours. And the long hours leave people with little time or energy for other activities, like self-advocacy. Self-advocacy has to happen after work, if it happens at all. There has been some discussion in the UK of suspending minimum wage legislation for people with learning disabilities. In Japan minimum wage legislation does not apply. In 2020 people with learning disabilities in regular employment earned on average £10,600 per annum, compared to over £35k for employees without disabilities. In the welfare market wages range from as little as £1.54 per hour to a maximum of between £6 and £7. This does not look good, indeed is comparable to the ‘pocket money’ approach which characterised work in Training Centres in the late twentieth century in the UK. However, as our book shows graphically (see this chapter and also the contribution from the University of East London’s co-researchers in Chap. 12) there are plenty of people with learning disabilities here who work for nothing or very little, to escape benefit jeopardy or in the guise of work experience or internships. The difference is that Japan is open about it and counts who is doing what for what reward (Sunman, 2020). What is missing in Japan is those employment opportunities developed through self-advocacy well illustrated in the contributions from Cardiff People First and Barod CIC in this chapter. Such work includes creating easy read resources; training health professionals, police, social work students; experts by experience inspections of care settings; and inclusive research, all of which value the person for the insights their disability offers.

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There are opportunities in the UK to do things better. The three contributions in this chapter illustrate some of the reasons for employment being an elusive goal, but also some of the ways to make it happen.

10.1 Cardiff People First The first section is from Cardiff People First. Cardiff People First employ as many people with learning disabilities as they can. Ashlea, Director, comments: If we don’t employ people with a learning disability then how can we expect others to?

They have some inspiring employees, whom I have been privileged to meet on several occasions. We hear from some of them—Dawn, Zara and Joanna— about their experiences, how they got into paid work and what has helped them succeed. A few messages stand out. Flexibility about timing has been important to both Dawn and Joanna. Both worry about being late—even though they rarely are late—so being relaxed about it has helped build confidence. Being part of a supportive team is mentioned by all 3. And having Ashlea working in the background to negotiate Access to Work, make sure that benefit rules are not broken, employ personal assistants who do their job well and manage really practical things like setting up a bank account for people. Ashlea is modest about what she does—‘all I do is transferrable skills stuff ’— but her commitment, experience and skill are behind the remarkable success they have had in employing people and encouraging others—like NHS Wales—to employ people too. Government agencies are ostensibly there to help people get jobs, but in practice operate so inflexibly and unimaginatively as to present additional barriers. One of Ashlea’s main achievements has been to learn how to negotiate these barriers. But it should not have to be like that.

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Ashlea Harris: Cardiff People First Director I am employed to make sure that self-advocacy in Cardiff People First is embedded in our practice; that people with a learning disability are an essential part of every decision. One of the things highlighted in the UN Convention that is very important to our members is access to paid employment. Of course, like other self-advocacy organisations we are small and precariously funded, but if we don’t employ people with a learning disability then how can we expect others to? But there have been real barriers to doing that in a small organisation. When I started work with Cardiff People First, they employed a cleaner and an office assistant with a learning disability. This is the easy way forward and very positive when your lead staff don’t have a learning disability; it means you can give people a chance to work and give them small easy tasks and supervise while getting on with other things. Recruitment was ongoing for 2 people to do presentations and training for a couple of hours a week, and they were appointed. One of the issues to overcome was pay and benefits. If our staff were to do a presentation that took all day, they would then not work for the rest of the week. It was important for their budgeting and benefits that we give them a contract for the year and pay them the same amount each month then keep track of what hours they actually did. That meant guessing in advance how much work they would have over the year. It also meant there was a member of staff without a learning disability who was responsible for advertising and booking work, making arrangements, helping staff to plan what they would say and how they would do their presentations, supporting them during the presentations. When you already have staff without a learning disability who work hard to run the organisation, changing the way you work is much harder. Existing staff feel overworked, stressed and responsible for the continuation of the organisation, and in busy times can feel that responsibility for staff and members with a learning disability takes their attention away from the work that needs to be done. We had staff without a learning disability who were facilitating groups to find out their views. When this is done well, it works effectively, but it isn’t perfect. Staff without a learning disability are seen as being in charge,

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seen as having control over whether people were ‘allowed’ to take part in the groups, and it was clear from arguments between staff who had very different opinions on what members wanted, that our members were telling each person what they thought they wanted to hear rather than what they really thought. At the same time, I could see that during meetings it was other members who picked up on what their peers were saying and were drawing out more genuine opinions at times. It seemed as if we had people who could, with support, do an effective job of promoting self-advocacy. Yet we didn’t have funding to employ extra staff, so we created volunteer steering groups for projects, and the supporting staff for those projects were encouraged to give all responsibility to those volunteers. It was hard at first for them to let go, and it was hard for our members to understand how to take control, so we had to come up with tactics to deal with that. When a supporting staff member was in a room with a group, all group members were talking to that staff member, so the plan was to leave the room for a while for some reason. At first the group would sit in silence, until they came back, then start talking to them again. Eventually though, the group got frustrated enough with not getting any work done that they started to make decisions while they were on their own. One group planned a meeting, but hadn’t taken all the things required into account: the supporting staff member didn’t comment to the group. At the next group planning meeting, they took over independently, looked at the meeting and the problems, and planned the next one which ran perfectly. It was becoming clear that we had potential people who could be paid to run our projects effectively, but we still had barriers. The main barrier was benefits. We would need funding for long enough and the right amount for the individual who got the job so they could either keep their benefits and still do the job effectively or come off them with the confidence they wouldn’t have to go through the application process again in a hurry. Then they would need support because they would be likely not to have any work experience, maybe problems with reading, writing, planning or mobility. Luckily I found Comic Relief had a programme open that wanted to support service user-led groups, and we got 3 year funding for a person with a learning disability and for a supporting

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PA. The success of this way of working meant our Trustees put in a policy that we would aim to employ people with a learning disability in all our frontline roles. The issue we then faced was finding grant funders who would give out large enough grants, and were willing, to effectively employ 2 people for the one role. Access to Work was something we had tried before when employing staff, but had been turned down, as on first enquiry they said if we were going to employ the person anyway, they wouldn’t provide any support. But some information around it meant we thought it was worth trying again. We found that our staff could apply for costs of someone to work as a PA. It was a very difficult process to go through, and explaining what was needed and why took a very long time. Even now, when we have had a lot of experience at the paperwork involved, it takes time, and we are often getting monthly claims paid with 3 months delays so we are relying on our cashflow to keep paying staff. The biggest barrier we have at the moment is trying to recruit suitable people to be Workplace PAs. We have training in place, but finding anyone to apply is hard: it’s a unique role and hard to explain. Now we employ people directly and also second staff to NHS and Cardiff University. We have other organisations that would be keen to employ people if they had the money to do it. Others are always impressed by the skills and experience of our staff, and the results they get. We have easy to understand policies (some on film) and procedures. We appreciate the way people work and find ways round any problems in our systems—systems are meant to help not hinder! We recruit people who show their potential, not on a checklist of what jobs they have done in the past or what qualifications they have. Every step we took worked better and better. People with a learning disability taking on frontline leading roles gives great role models and gets them seen by other organisations and partners. Getting awards for their work is great too! What next? Some of the jobs to do with running an organisation are technical, for example dealing with finance and budgets, or legal obligations, so you do need some people in the background with skills and experience. But making sure that people work well together and making sure that our members get their opinions heard, would be the next step

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in employing people with a learning disability. To do that we would need more money and more time to give people to develop into a role like Director. Finding that money on a long term basis would be a great next step. Dawn Gullis: Cardiff People First Ambassador (Fig. 10.1) I have been working part time for over 20 years, with Cardiff People First now and with Mencap in the past, speaking up on behalf of people with learning disabilities.

Fig. 10.1  Dawn Gullis showing Mark Drakeford (First Minister of Wales) our Ely Hospital exhibition

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The difficult and challenging parts of working for me are reading and writing; how working can affect my DWP (Department for Work and Pensions) benefits; that I have no qualifications; and sometimes I worry about being late. I do have help with these things from Cardiff People First, like having flexible working hours; help with sorting out DWP benefits; and a Workplace PA to help with reading and writing as well as helping me to plan my time. Even though I don’t have paper qualifications I’ve got lots to offer. I understand people with learning disabilities; I know where they are coming from and they will talk to me. I understand people with learning disabilities’ problems and issues, as I have experienced lots of similar things myself. I feel as if I have compassion and understanding and enjoy helping people and standing up for people’s rights, and hope that I have helped in changing people’s attitudes and prejudices. I try to make a difference with women with learning disabilities and health issues: such as raising awareness of importance of Smear tests and Breast cancer within a group from Cardiff People First called Pink Ladies. The ladies wanted advice on number 2s, bowel screening. They didn’t know how to do it and they were scared of the results. I encouraged them to do it and it came back all clear. In 2017 I won the Chwarae Teg Womenspire Award in the Community Activist category, and in 2022 I was a finalist in the Community Connector category. These awards are for women with and without a disability all across Wales and the competition is fierce. The Paul Ridd Foundation, who campaign around healthcare, have appointed me as an Ambassador. Joanna Jones: Health Care Support Worker I have been working for Cardiff People First for a number of years now, since November 2018. It’s good to have a paid job. You’ve got your independence, a reason to get up in the morning. It’s making a difference to people’s lives. Before I was employed by Cardiff People First I had a paid job in 2012 and had to leave due to mental health challenges. Between 2014 and 2020 I volunteered weekly at a coffee shop in a church, until the global pandemic closed it down. Before Cardiff People

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First employed me in 2018, I was in the coffee shop volunteering for 3 to 4 days a week. I had some challenges for getting back into paid employment and thought I will just have to volunteer for the rest of my life and not do any paid employment. Cardiff People First were great and marvellous at helping me from day one. I have a fear of failure, as a person who is often hard on myself and also fear of letting others down too. I was worried about something awful happening and me getting the sack. I have a number of mental health challenges even to this day. And I’m on a strong medication for my mental health—this makes it hard to function sometimes, especially when under pressure or extra tired. I try to avoid too much stress because then I can cope better. Before Cardiff People First, I thought I didn’t want my mental health struggles to have a negative effect on my employment, so I thought I could not and should not do any paid work—it used to be hard to get on with my day back then, on my depression days and the other conditions linking together to make days sometimes challenging. I struggle with time, I am good at telling the time, for example 3:15 p.m. is a quarter past 3 in the afternoon, but the part I struggle with is knowing how much time has passed. This could make 5 minutes seem like 10 minutes, or the other way around. I only know how much time has passed by looking at my phone or watch or tech tablet, or a wall clock. I usually stick to my watch on my phone, and I think they are more accurate than a wall clock. I was worried I would always be late. Whereas my Workplace PA made me do a planning checklist to help me get ready in the mornings. Working for Cardiff People First has helped me overcome barriers. I have been accepted as a person and also as an individual. We are all unique. I was welcomed by all staff at Cardiff People First and welcomed as part of a team to work with other organisations. I’ve been encouraged by colleagues and members and signposted to other organisations and opportunities. Cardiff People First are flexible with timing and understood if I was ever running late and all the support has given me more confidence and well-being. When I need work related support I get it from my Workplace Personal Assistant. I’ve helped people during my time at Cardiff People First:

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• I was one of the Project Officers for the Come Together Project. The project was a 2 years project between 2018 and 2020, which helped people with learning disability to feel less lonely and less isolated in a local area. We worked in three areas of Cardiff. It was a lovely project and had much success in helping people get involved in local activities, meet new friends, socialise more, and practice social skills. • I was one of the Project Officers for the Our Health: Our Voice project. A 1-year project. The project was inspirational as we made ‘Once for Wales Health Profiles’ for approximately 70 people. It can be taken to all medical appointments. It could save a life. It is important. It is free. It has ‘no strings attached’. It belongs to a person with a learning disability. We worked with Public Health Wales and the local council. We also held meetings at Cardiff People First on Zoom about health and had guest speakers. • I have been seconded (that means ‘on loan’) to the NHS since October 2021. I have had wonderful opportunities. One of my favourites was doing a recorded voice over for an animation that Public Health Wales created. Another favourite has been designing a self-referral form so adults with a learning disability can self-refer to the learning disability health team service. I have been creating and designing other leaflets and documents, such as a document named a Journey Journal so pupils in special schools and their parents/care giver can be in charge of their own personal transition journey, and the document helps to navigate services and puts the person in the centre. I have also made videos about inclusive communication, soon I will be delivering training with some colleagues. We have also worked with cardiology department in a Cardiff hospital to help make accessible leaflets, and working with audiology department too. I’ve worked independently and with others, have had many a laugh and I am pleased to know that my work has been ‘making a difference’. That has been a highlight of my role knowing I can make a difference to people with a learning disability, helping shape and change the services for the future. Having a disability doesn’t have to be a barrier. I know from experience and observation that having a disability has some challenges and difficulties, yes, but if you look a little deeper, we are all the same deep down.

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Zarah Kaleem: Community Voices Leader I had finished my college studies in September 2004 and had been doing the occasional volunteer work. Life almost came to a standstill—routinely staying indoors watching television etc. I’ve always felt like an outcast and never understood why. In 2008 one of the staff of my local People First is my neighbour and we went to the same high school! The girl is then a staff member—of Newport People First! She told me about an organisation run for and by people with a learning disability called Newport People First, I never knew anything like it—my neighbour would take me to People First meetings and sit right next to me—before I realised it, I found the meetings and its participants less and less intimidating! It also made me realise I have a learning disability and have the power and right to change society and my community’s perception of myself and everyone else who have a learning disability. I gradually started attending a lot of meetings and discovered there are People First groups not only in Wales but all over the planet. We are all passionate about sharing disability awareness training; the positive feedback from our different audiences really help to motivate us to carry out this great venture! After finally calling it quits with volunteer work at a local bookshop and WH Smith I felt I was ready to be in paid work. Cardiff People First advertised 3 projects paid work for people with a learning disability—I applied for the events project and succeeded at the interview. I’ve been working with Cardiff People First since May 2016 on many other projects and I’m now a few months into my other job at Newport People First. Through my career I’ve overcome barriers such as travelling to another city, time keeping and a major confidence boost—not only that, 3 years ago I got the chance to go abroad to an international love life training with my work colleagues to Netherlands! We went for a week—got to know and work alongside other nations on how to train housing associations and families on equal rights to a love life for people with a learning disability. This training got me thinking about wanting to train cultural leaders in my community about disability awareness—I’m still trying to

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get that ball rolling as I’ve had experience of misunderstanding from my community. What I am most proud of is recognition. That is empowering me. There are not many people with learning disabilities from a cultural background in paid work. I’d like to believe I am an example. You have abilities even though society has negative perceptions of you, and you believe that. My job has given me self-belief. My support system—colleagues and family—encourage me to go the extra mile, to do more. There are things I still want to achieve. A massive percentage of people stay away from people with learning disabilities, they don’t have the knowledge. I want to approach leaders in my community to tweak their cultural rules to make people feel welcome. One of our service users, when he used to go to his mosque, they’d say ‘go sit with the kids’. It’s going to put people off their faith. I could get a meeting with them, a couple of my distant cousins are on the mosque committee, they could get me a meeting. It’s a confidence thing. I’m terrified of rejection. The let down is so intense. I am thinking I could ask my aunt to come with me. That would help me. What I enjoy most is being part of a team of likeminded people employed at Cardiff People First, and our supports, we are there to encourage each other, professionally and otherwise.

Top Tips • Give us a chance, ask us what reasonable adjustments we may need, allow us to be ourselves and watch us shine; we can be an asset and a valuable member of your team, look for our strengths, not our weakness. We may work a little different or be a bit different. Acceptance is important. • Treat everyone with kindness and do not just listen to stereotypes or have prejudices or discriminate against people with any disability. Water the seeds well, and watch us grow into a beautiful flower, so we can blossom, and give others joy and laughter and a reason to smile. Changing the atmosphere of someone’s day from sad to happy to joyful.

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• Get in touch with your local self-advocacy organisation. You will find people there who already have the confidence, skills and experience not only to do a good job, but to inspire you. • If you want people with a learning disability to use your service, you need to employ someone with a learning disability or you won’t have the results you need. Just take that first step. • Treat employees as individuals and give them a chance to get used to working: they may not have worked before so all those little things you take for granted they might not know. They will work it out, but you might need to be flexible at first. • Recognise achievements publicly and put people forward for awards. It is an inspiration to other employers and helps to inspire change.

10.2 Barod CIC, a Community Interest Company Barod CIC is a Community Interest Company employing people with and without learning disabilities—everyone is paid at the same hourly rate. Barod means ‘ready’ in Welsh. Here Barod workers explain how they got started, and some of the creative ways they have found to sustain the company—10 years after it started they had a turnover of £1 million pounds. Barod grew out of the self-advocacy movement in Wales and remains closely aligned with it. The knowledge and skills people learnt as self-advocates proved valuable as a bridge into paid work. And well before the explosion of online meetings due to the Covid lockdown, Barod were using Skype to run team meetings. What is striking about Barod’s story is how little support they received from Government agencies. Access to Work proved too inflexible. But small amounts of cash—like the startup grant of £5000 (€6000) from the National Lottery—and advice—from the Welsh Cooperative movement— went a long way. Barod is definitely unusual, could it be a model for others to follow?

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Ready for Work Bryan Collis, Claudia Magwood, Simon Rice, Simon Richards Barod formed as a workers cooperative in January 2013 with four worker-­ member-­directors: two had learning disabilities and one had experience of supporting people with learning disabilities. All four were involved in the People First movement in Wales. BAROD CIC’s founding directors—Anne Collis, Jonathan Richards and Mal Cansdale—met over a beer at the All Wales People First Conference along with some others, and discussed the gloom of reduction in funding for self-advocacy in Wales, the difficulty in getting real work with real pay and the way people (support workers, job coaches and others) kept on saying ‘You’re not quite ready for work yet, just do this course and we’ll see’. Some also felt that after a number of years working in self-advocacy at a Wales level they should move on—but to what? Stacking shelves in a supermarket, waitressing or kitchen work? As part of the self-advocacy movement in Wales they knew about making information accessible (so much of it was not!). They knew about finding out what people thought (civil servants paid their groups to do that). They also knew about representing the views of other people to local and national government and training nurses, social workers and the police. The idea formed that it would be possible to have a company where everyone was equal, paid the same, involved in decisions, and getting paid to do what they had skills to do. Not everyone was good at reading, but we could get support through Access to Work for that. Some would need to reduce what they did with their self-advocacy group. Some would need to check what would happen to their benefits as they would be working for 16 hours a week or more. One of them, Alan, put it this way: ‘We were fed up with being told that we were not ready for work. We were fed up with employers not being ready to give us jobs. So we decided to make our own jobs, and run our own company. We called our company Barod, which means “ready” in Welsh—a sort of [makes a sign with his hand] to those who put us down.’

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Fig. 10.2  The Founders of BAROD in 2013

The original group started with five people; hence the five speech bubbles in the globe logo (Fig. 10.2). However, when one of the group told his job coach he was going to be a company director, he got a ‘That’s not for you!’ response and he backed out. Barod got an Awards for All grant of £5000 to get started. The grant paid for some support for those who needed it and for the costs of meeting up to make plans. As the group wanted to form a cooperative, they got some support from the Wales Coop Centre, who paid for an advisor who led a nearby coop to lead them through the process. One of the group lived in North Wales and the others lived near Carmarthen in South Wales, so after some long train journeys, Barod invested in laptops with cameras and got used to video conferencing using Skype. Carmarthenshire People First, the self-advocacy group that two of the members belonged to, offered a small room at a small rent to start as the office. Barod had close links with All Wales People First: two of the four were on the Board of Directors. This meant learning about how to deal with conflicts of interest in decision making. Barod approached Photosymbols

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with their idea of doing easy reads as a way of making money. Photosymbols were very helpful, and an agreement for sharing new Photosymbols Barod developed, especially ones with a Welsh context, was made that saved a lot of money. One member of Barod had written a guide on how to tell if a document is accessible.2 This proved useful, as Barod started to do easy reads where people with learning disabilities were the ones designing the pictures to be used. This work continues to this day, with an expanded team including people from local self-advocacy organisations that get paid to produce easy read. Barod also started to get involved in research and training. It developed a way of working together that meant that the message was in words everyone could understand. There was always an element of fun, and Jaffa cakes! Barod still works in teams with people contributing their skills and experiences. This has meant a shared journey of learning for everyone. There were some bumps along the way. Helping members of the team to get bank accounts was interesting. One member applied for Access to work3 support and got it. It was helpful for the team, as the member had difficulty reading and writing. However, after a while, frustration with the way payments were organised and the restrictions about what the support worker could do meant that Barod decided to go it alone. It did pay for some dictation software that enables workers with low literacy to send emails. The members with learning difficulties had limited access to the internet at home. However, working for Barod meant they had laptops. These had to stay in the office to protect the people and the laptops from viruses and scams and the temptation to break Barod’s rules about internet use. All members were given a work mobile phone, as personal phone contracts varied about how many calls/minutes were available. This helped separate work and personal life but needed managing to make sure it was not misused. At one time all members had a company debit card. This was because members had different personal circumstances and not all could pay for things and wait for a refund. However,

 https://www.ldw.org.uk/er-resource/check-it/  Access to Work is a UK Government scheme that ‘can help you get or stay in work if you have a physical or mental health condition or disability’. https://www.gov.uk/access-to-work 2 3

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it needed careful monitoring and after a while, as some workers left and new ones joined it was phased out. Being company directors in a small membership cooperative was a big confidence boost but also a responsibility. The members with learning disabilities felt this particularly. It changed how they viewed themselves, how they related to their social groups and their aspirations. For one this led to him leaving Barod because his aspirations were not aligned with Barod’s values. For another it led to the risk of ‘mate crime’ when people got to know he was working and earning money. Everyone was paid the same and worked for more than 16 hours. A decision was made to start with the real living wage. For one member this represented a real leap of faith. Was he ready to leave some benefits behind, with their security? Was he ready to say goodbye to support with rent and reduced council tax? Reflecting later Alan said it gave him a sense of pride that he was not on benefits anymore. Supporting one another and holding each other to account was a real challenge. Initially Barod developed a peer review system with two people doing review meetings with one person. After 4 years, one worker-director had left and one had stepped back from being a director. A supporter was co-opted onto the board to give an independent view and it was clear something had to change. The result was that Barod transformed into being a community cooperative. This meant that there would be worker members and community members. This expansion would allow others to join in without the need to be employed. Then it was possible for all members to elect a board of directors, with the aim of having equal numbers of people with and without learning disabilities on the board. Also, workers did not have to join Barod, but could decide after working for 6 months. This change enabled Barod to grow. One worker did a research degree and developed some research and consultation tools that Barod is now selling. Barod was involved in a research programme called DRILL4 which championed research done by and with user-led organisations. The learning from leading research has resulted in the development of a  DRILL (Disability Research in Independent Living and Learning) was a 5-year programme of research and pilot projects run by, for and about disabled people in the UK between 2015 and 2020. https://www.drilluk.org.uk/ 4

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Research Team that develops its own research projects. Barod has championed inclusion by leading sessions at public sector conferences on ‘jargon busting’, trialling a whispering service and helping GovCamp and the NHS to include people with learning disabilities in their events and hack days. One hack day project has developed into an app called AssistMyLife,5 a tool to help people live independent lives. Barod has championed co-production of knowledge in research and is involved in reviewing academic papers before publication. Barod was looking to turn over its first million pounds in 2023, when it turned 10 years old. Barod has 25 members, of whom 6 do not have a learning disability. Members meet and decide the strategic direction of Barod together. After trying standard business development approaches Barod has developed its own. We have an 18-month business plan that is only in Easyread and the Directors use it to check on progress. Barod currently employs 15 people from 2 hrs a week to full time. Thirteen of these have a learning disability or autism. The growth in workers has meant bigger and bigger rooms at Carmarthenshire People First’s building. It has also meant the need for 3 teams led by people who are responsible to the directors. For some their work is a specific time each week. For others it is a certain number of hours a month. All workers fill in an online timesheet and everyone is paid monthly. This means that week to week differences in hours can be coped with and National Insurance or Universal Credit systems are satisfied. Because people with the attitudes and skills Barod requires are not all in one place, Barod has always worked virtually, using video conferencing, video calls and a shared drive in the cloud. Since the pandemic Barod’s Research Team has workers that have not met face to face ever. This has been a blessing for some who are anxious about being with others, whilst some have lamented the lack of fun. Barod has provided routers, laptops and headphones where required. Zoom meeting are our preferred format, and workers have taken turns to host, chair and take notes of meetings. The use of Zoom has meant a growth in skills for everyone, and there has been an unexpected benefit. The ability to mute yourself and turn your camera off means a worker in a support role can  http://assistmylife.wales/

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be available to help if required, but people are not checking out the perceived authority figure to see if what they said is approved or not. The many different platforms for communication mean that managing a team can be challenging. Adapting to the way people react quickly to messages on one platform but will not see an email means that a team message may have to be sent using a different medium to each member. For some teams, WhatsApp or Messenger groups have proved to be a great benefit. This is particularly true as voice recognition software has improved and is available on every smart phone. Early on Barod came up with the ‘right shoes’ idea. As workers we can be in different places at different times. If we choose the right shoes for where we are going to work that day, then it tells us what else to wear and how to behave. When we deliver training, we will wear smart shoes. When we are in the office, we might wear trainers. Being a business means things change. People come and people go. Some workers have moved on to other work because of changed circumstances and priorities. Some have left because the project finished. Some have left having tried working and deciding it is not for them. Most have stayed in touch and add to our growing network of people with lived experience out there to change things. Four Barod workers share their stories and thoughts. Samantha Hall I am a young lady with Down’s syndrome. On 19th August 2021 after I had the walk with the walk group I headed back to Carmarthen and also got my lunch before heading to Carmarthenshire People First office. They are based there, Chris and Mal and other work colleagues. I had my lunch and then talked about TikTok and Instagram. Earlier I talked about social media itself. They said to me would I like to start working I told them I was away that week with racing. I was on the way back from racing Mal sent me an application form for work to fill out. That night my mum and dad were happy about it. They were very pleased with me. On 7th September Mal sent me a private message and Barod directors are happy for you to work with us.

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That evening I went to club and I told my friends I got job I did they were so happy for me when I said I had got it. I was away that weekend. I started 9th Sept 2021. I was settled in with the team 24th. I have started to work on the presentation I have. When we started to travel around different areas we can use the presentation at events and workshops. We all have work emails we have, I am checking mine every day at work to keep everything up to date. We have guidelines for our social media and we have a spreadsheet on the drive. In October me and Mal went to Haverfordwest to do a presentation. I was very pleased about it. On 3rd Dec I had my first Christmas work do with work. We went to Cardiff for food and we went to the theatre to see a show. It was amazing. I enjoyed it I did. 17th Feb we did drop in so we can tell people about the app we made and how much we have done. We are proud of each other as a team. I have done food order for a couple of events and also for Barod AGM. I am good at food order I am. We have been signing businesses to our directory we have. 17th March we went to Haverfordwest I was work late I was with the team. I do enjoy work with the team. When I got home I had post wait for me. I had certificate of digital responsibility and collaboration level 1. I haven’t been on the train on my own before now. I got used to the train. I am more confident. Now [I] use the train at my work. Colleagues want me to travel more on the train and bus so that is my goal to travel more with work and I want to travel more with my friends and do more like that. I am learning more every day and I am improve my skills I am. I got my independence I have. We have done couple Zoom meetings and Teams we have. List of different places I have been with work: Haverfordwest (I have been to Haverfordwest a couple of times), Cardiff, Swansea, Pembrokeshire county show. Been to different place with work I have. I had a call 2nd Sept at 4.35pm; Mal said we are going to Animecon for work. I was so excited about it. On 25th Sept we went out for the day. I have treated Mum and Dad to lunch. I have bought them lunch I did. I was very pleased with myself.

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When I got paid, I saved up for Nintendo switch and I got some games as well for my switch. Bad things about work: there is nothing bad about it. Working is a paid job, volunteering is not paid. I done some volunteering work before. I was just helping out and work on the till. I did. It was not for me. I wanted to work with proper wages packet. I am meant to do one to one Zoom meetings or teams or anything, I prefer to do face to face meetings I do. We will attend Pembrokeshire college next week we will. In my spare time I do my own shopping I do. If I need anything in the week I can pop in the coop when I am in Carmarthen for work next I do. I have made so many friends I have with work and there will be more on journey too, am so pleased with the hard work I have done, there will be more too in the future. Keep put on my social media and my dream goals to achieve so much I have done. I am still learning new skills I have done so much I have with Barod and doing proves I am working with the team. Please come and follow us on our social media we are on Facebook, Twitter and Instagram we are also on TikTok too. We are greatest team in west Wales. I hope to have a book out about my story with work and also my story. I would like to go on TV and radio to talk about AssistMyLife app. My dream has come true, most of it. Get independence and confidence are my main points and the other main point is public speaking. Main point I enjoy: I wake up at 7.32 every Wednesday and Thursday morning. I don’t come into the office every Wednesday and Thursday. It’s been amazing job to have I really like it I do. Its great and we do a lot of fun to. We try to do some fun stuff at work. I really enjoy myself in the office. I do crack on with my work when I get to work. I set up at the desk and crack on with my work. When we have any events or workshops or something like that I put it in my diary. I am still learning on the way I am. I still achieve my goals and my future to be more independent and still grow my confidence. I have started to order my own lunch I have. I am very pleased with my hard work am very organised I am. I put all the dates and times in my diary. More to come in the future.

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Simon Rice Simon joined Barod as a co-researcher in 2016, working an average of 2 hrs a week. He had an interesting background: he had joined Carmarthenshire People First, got involved in training the Police, working with Liaison nurses in the Community Learning Disability Team, being the Chair of the board and representing the group at National meetings. Simon was interested in developing a self-employed career as a photographer. He used his skills in the research, recording meetings and helping to produce videos that told people what we had found out. He also developed a metaphor for coproduction involving pre-decimal currency—look out for the academic paper. But employment isn’t Simon’s goal. He has 4 big AIMs: • • • •

To come off benefits. To be self-employed. To become an employer. To give people with learning disabilities voluntary opportunities or paid work.

As part of a DRILL project, Simon investigated photography as a career. He learnt about selling online, what sort of things to sell, doing the finances, branding and business planning. Three years later, he reckons photography is a viable business (he still sells some things online) but it is crowded. So in the last year he has been developing a new idea: a neurodivergent friendly shop in Carmarthen. There are things you can buy to reduce social anxiety and things to help you concentrate or overcome sensory issues. However, these are only available online; Simon wants to set up a physical shop. He has a business plan, is doing the market research with people who are neurotypical and those who are neurodivergent. He even has a name for his shop ‘Cwtch’ (Hug in Welsh). There is funding available locally for new business start-ups and Simon intends to apply and start an adventure! Reflecting on the last 6 years Simon says that being employed by Barod gave him the motivation to get involved in the local Learning Disability charter, promoting the rights of all people. It also helped him to start to think about business. The research meant asking others about how they

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were going to develop business ideas, so he asked himself the same questions. He saw how a business worked, learnt about being self-employed and applied the lessons from the research to his own life. Simon is looking forward to developing his new business and reaching his goals. Simon Richards Simon lives in Cardiff in a shared house run by a supported housing agency. He has been there for a few years. Before that he lived with his parents. As he has become more independent. Simon has taken up roles in the self-advocacy movement in Wales. He joined Cardiff People First and is now the Chair of their directors board. He has represented them in All Wales People First and is Vice-chair of the National Council and is also a director of All Wales People First. Simon joined a drama group called Hijinx Odyssey and performs in their annual Christmas production. Odyssey has a mixture of people with and without learning disabilities. They co-produce the stories and perform the Millennium Centre in Cardiff. Simon has joined Stay up late and is an ambassador for them in Cardiff. Cardiff People First has organised a number of nightclub takeovers, with live music and a safe space for people with disabilities. Simon enjoys the open mic night in his local pub and helps out with running karaoke sessions once a week. He is an avid squirrel and train spotter— posting pictures on social media. During Covid lockdowns Simon’s ‘spot the squirrel’ pictures gave some light relief to many friends. Simon keeps in contact with his family, visiting his Dad every week and seeing his sister and her 4 children often. Simon’s first contact with Barod was in 2016 when he joined a team helping the Public Ombudsman make their website accessible. Unfortunately, Simon caught pneumonia and had to back out of that work. Later he was approached to help in a project in Torfaen, about 20 miles from Cardiff, called ‘A Good Day’. Simon says ‘I liked the sound of the project. There seemed to be the opportunity to help make a positive difference to people’s lives.’ Simon worked for 12 hrs a month, travelling to Torfaen independently. He learnt new bus routes and gained more confidence. The work involved observing day opportunity sessions and leading discussions about what a good day could look like. However, Covid came and the project went online. There was less work and after

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helping the local authority with its communications with people who used the services, the project ended. Then Barod started a Research Team, meeting online and learning to work independently on Zoom. Simon got involved in reviewing academic papers and worked on an evaluation of a social movement project in England. Simon likes working online. Hosting or chairing Research Team meetings is now everyday. Doing interviews and meeting face to face can make him anxious and this is reduced online. One frustration has been trying to work with some public bodies who insist on using Teams. This is much more difficult and reduces the number of people who can join in! Simon says that working is good! He likes being paid. The work is enjoyable, but it is also a responsibility because there is the chance to make people’s lives better. He likes the way Barod work is flexible. There are some regular commitments like team meetings, but the work can be on different days. He likes having a work laptop and fills in his timesheet online without support. He prefers to communicate by text or messenger that he picks up on his phone, rather than email where he has to use the laptop. Being confident on Zoom meant he joined in events in England during the pandemic and got to be a part of an internet song. There are some stresses with working. Once or twice there has been a clash between work and other things. Also, work sometimes means an early morning. Simon doesn’t like early mornings, or having to get to bed early to be sure to wake up on time. Claudia Magwood Hi, my name is Claudia. I am 28 and I live in southeast Wales. I was born in Northern Ireland and moved to Wales when I was nine years old. I grew up with my parents and my twin brother. One of my parents is French so I can speak fluent French. When I was 18 years old, I went to a residential College to finish my education as I was unwell for a few years. I did A-levels in English Language and French. After College, I came back home to live. I wanted to earn my own money, so I started to volunteer to get experience and the skills I needed to get a job. I don’t think I could do a full-time job because of my disability. I started volunteering with Bridges Community Centre and Building Bridges (a project based within Bridges Community Centre which helps

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young people with additional needs). I learned things like how to organise myself, how to do admin and how to communicate at work and with different people. Whilst I was volunteering, I got the bronze and silver Millennium Volunteers award. Once I thought I was ready to get a job, I started looking for work. Whilst I was looking for work, I did some volunteering in a charity shop to keep me busy. My first paid job was as a French teaching assistant in a School. I also got a job as a research assistant/peer researcher after working in the school. I enjoyed doing the research and CARP Collaborations trained me in how to do research. When that job finished, I looked for other jobs that used my skills. I did some work doing telephone calls and another job working for the Children’s Commissioner of Wales to write a report. For the last 2 years, I have been working for All Wales People First and for Barod Community Interest Company. The work has totalled 25 hours a month. Both jobs involve research, which I enjoy. The All Wales People First work has ended now, so I am just working for Barod. I have continued to learn things as I have worked. During the pandemic, I have learnt how to use Zoom and Microsoft Teams to do online meetings. In Barod, we take turns being the host and chairing the research team meetings. I have been developing a research project about employment after Covid. We have been reviewing papers for an academic journal. We have also joined some sessions run by the Open University. They have been about Big Ideas or theories that have an impact on the lives of people with learning disabilities. This has been very interesting and Barod has used what we have learnt when we do our research work. There are pros and cons with working. I like working because I get to earn my own money and it gives me a sense of achievement. I don’t like working because sometimes it can stress me because of my sensory issues. But overall, working is better. Looking Forward Barod is excited about the future and aware of the terrible situations of many people with learning disabilities. Barod is starting to sell services outside of the learning disability world, without compromising our values and working in teams. There are challenges. As the rate of inflation

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increases, the real living wage increases. However, the income thresholds for benefits are not rising in line with inflation. We have to do an impact audit to make sure that giving a person a pay rise does not mean they have less money overall. Top Tips • It can take a long time to get going. You have to agree what you want to achieve and how you will do things. This is important! Don’t give up! • When you don’t have money or don’t have independence then people don’t notice you. When you have money and independence people notice you and some ‘friends’ may try to take advantage of you. • It is great getting a job and feeling in control of your life and having some money to spend that you earned! • We all have strengths and weaknesses. Working in teams means that we can do more things better. • Always include some fun in any work. It makes it easier and you will tell your friends good things. • ‘Wear the right shoes’ from the start. Think about how you dress. Look after yourself and treat other people well. Work is work. • You need a plan. But a plan is a plan. It is not your boss. You are the boss. Things will change, so the plan will need to change.

10.3 George Burt’s Story The final section is by George. George tells us about his journey to a paid job he really loves. George has had lots of ups and downs on his journey. He has been helped a great deal by the investment in support for him to prepare his cv, practice interviews, build confidence in handling money. George was lucky to find a pub landlord willing to invest a little more time in a new employee, but rewarded with an excellent barman. As I write this in 2023 every conceivable catering outlet is looking desperately for staff—it makes that extra investment more than worthwhile. And well done to George who has shown admirable resilience in his search for a job he loves—and a willingness to get up really early. My name is George and I want to tell you about my journey to getting a paid job.

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First a little bit about me, I am 30 years old and a life long West Ham fan, I have a season ticket and go to as many home games as I can, I also have a learning disability. A couple of years ago I sat down with my family and some friends (my circle of support) and had a really good think about what I wanted to do in my life. One of the things I decided was I wanted a job, I didn’t know what I wanted to do but I knew I wanted to be busier and earn money, I was getting bored at home I wanted to get out and do something! I was referred to an organisation that was supposed to help me think about what a good job would be and help me to get to a place where I was ready for work. This didn’t work too well for me, they didn’t come up with any good ideas and although I said I didn’t think shop work was right for me, when they found me some voluntary work to try it was in a charity shop! They said they couldn’t support me to get used to it as they were only funded to do that if someone had a paid job. I decided that they were not right for me and I sacked them! At that point I didn’t feel very confident about trusting anyone else to help me. In March 2021 my mum told me about another organisation that were helping people to get work and she said they sounded good so I decided to give them a go! This organisation is called ECL and our local authority commission them to help people to get paid jobs. It’s good because you can refer yourself you don’t have to have a social worker and you don’t have to be getting support from social care. (Here is a link to info about their inclusive employment offer: Inclusive Employment | Essex | ECL.) I was given an inclusive employment consultant called Becky and the first time I met her was on Zoom and my mum was there too. This was just a chance to get to know each other, Becky was really nice and very positive about how she could help me in my goal to get a job. After that first meeting I didn’t need my mum to be there. Eventually Becky and I were able to meet up in person and we spent quite a long time working on my vocational profile, I told Becky about the things I liked doing and the things I thought I was good at and the things that I found difficult, this helped us to think about the kind of things which might make a good job for me.

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Becky helped me write a CV and we started looking at what jobs were available near where I lived. I told Becky I didn’t think I could work in a shop as I worried about doing the money, we talked about how tills work in shops and how it will tell you what change to give, Becky then bought a pot of money with her and we did lots of practice lots of times. In September of 2021 I decided I felt ready to apply for jobs, Becky helped me send in an application to McDonald’s and I got an interview. They sent me a list of the kind of questions they might ask me and I had the interview online with Becky sitting beside me. I was very nervous but I thought I did ok but I didn’t get the job. In October Becky told me that one of our local pubs had advertised a job and she had spoken to the boss who said he would give me work trial to see if I was right for the job. I was very nervous when I arrived but Dave the boss was great. Becky came with me and when Dave was explaining all the health and safety stuff Becky made sure I understood and explained some of it in easy words. Over the 4 shifts I learnt how to serve in the bar, pulling pints of beer and measuring spirits, filling up the shelves. I learnt how to use the till and card machine. I took food orders and delivered food to the tables and cleared away. My mum and dad couldn’t believe what I was doing! I was really enjoying it so when at the end of the work trial Dave said he wanted to take me on I was very happy. My mum said I didn’t stop smiling for the rest of the day! In November I started my first paid job in the pub working 3 shifts a total of 15½ hours per week. I worked a Monday afternoon, Thursday evening and Saturday afternoon. This meant I had to miss quite a few football matches, but I was okay with that as I had a job! Once I had been there a while I felt I had really settled in, sometimes I used to stay for a couple of pints after my shift finished. The locals got to know me and it was great when they came to the bar and said, ‘Hi George great to see you’. Sometimes I would see them when I was out and about and they always spoke to me. When it was the bosses birthday he invited me to join him and the team on a night out I jumped at the chance. When I got my first payslip I took my mum and dad out for dinner, in the pub where I worked of course! At the same time as my work trial and getting the job I was also part of a film which looked at people in Essex getting work (film clip of me here:

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Fig. 10.3  George Burt—working in the pub

https://youtu.be/33ZS48AdGrs). My boss Dave was in the film too one of the things he said was ‘You just have to have a little more patience in showing people the ropes and you will reap the rewards. The look on his face just made it all worthwhile. It’s great to give something back. We’ve got a great barman and I feel like I’ve done something for the local community.’ I was so pleased to hear he thinks I’m a great barman (film clip of Dave here: ECC LD/A Report—Dave—Giving back.mp4 (vimeo.com)). I felt like I had the best job in the world and was really happy, but that all changed in June 2022, my mum woke me up early to let me know that

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the pub was on fire. Sadly the pub and the cottages next to it burnt to the ground so my job came to an end. I felt really sad about this as I loved my job but I was glad no one was hurt. Becky called me on the day of the fire to see how I was and said when I was ready to start thinking about another job to give her a call. After a few weeks I felt ready to start looking for a new job, I felt more confident now that I knew I could do it. The first thing we did was update my CV then we started looking. I applied for a few jobs and didn’t get any interviews at first which made me a bit sad but we kept trying. In September 2022 I applied to the East of England Co-op for a customer service assistant position at their supermarket in another town to where I lived. If I got the job this would mean I would need to get back to using public transport, I hadn’t really done that since leaving college quite a few years ago. I was really pleased to hear I had been offered an interview, Becky had since changed jobs so it was another person who helped me prepare for the interview and came along to support me. This was an in person interview and I was really nervous, at the end of the interview I didn’t think it had gone well. I was really surprised to hear a week later that I had got the job! My old boss Dave said he gave me a glowing reference. The job didn’t start until the 31st October so I had a few weeks to make sure I felt confident on the bus and then the route once I got off the bus to the shop. I work 3 shifts a week from 7am-11am so that’s 12 hours each week. I have to get up at 5am so that I can get the bus at 6.10am, that was hard to start with but I make sure I go to bed earlier to get a good nights sleep. I love the shifts I do now as it means I never have to miss out on going to see West Ham play. My job now has me working in the dairy section of the supermarket, refilling shelves and rotating stock, it can get chilly but I have some fingerless gloves to keep my hands warm. They have given me a buddy to help me to learn the job and then once I’m more confident they will still be my buddy to ask anything I’m not sure about. This is great for me as I know who to speak to. My new inclusive employment consultant is called Wendy (very confusing as that’s my mums name too!) she is now handing me over to Jackie who will be my job coach, she will be with me for a bit longer until I remember where everything goes on the shelves, as I struggle with this bit. Once I don’t need Jackie anymore

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she has told me I can ring her if ever anything comes up that I feel worried about. I am really enjoying my new job and I think that in the future I would like to learn other roles in the shop, I might even give the tills a go although I think it will be very different to the pub! I am hoping that there will be a staff Christmas outing so that I can go out and have fun and meet new people. Having a job has made me much more confident, I don’t get so nervous meeting new people and I feel I can talk to people better. I have got to meet new people through work, and some of them are now my friends. It’s great having some extra money in my account too! By the way my old boss Dave got in touch with me to say he was reopening in a different place, although to start with he couldn’t give me my old job back, but he said if he got busier he would be in touch, so I may have a decision to make in the future, to stay at the Co-op or go back to working in the pub, or maybe I do both, who knows! Top Tips • Find out if there is support in your area to help people with a learning disability to find work. • Be brave—getting a job is nerve wracking. But once you have a job you like you will feel great. • Talk to people who know you well, ask them what they think you are good at. This will help you think about what a good job could be for you using the things that you are good at. • If the job doesn’t work out, don’t give up try something else.

Conclusion This chapter about work and money shows both the value of paid work to people, but also how to achieve it. Three different examples—a self-­ advocacy group, a Community Interest Company and a determined individual—with a strong message that this is achievable with the right approach and some flexibility. If only the institutions of the state—the benefits system, programmes like Access to Work—could get this message too.

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References Department of Health. (2001). Valuing people: A new strategy for learning disability for the 21st century. Cm 5806. SO. Department of Health, Social Services and Public Safety. (2005). Equal lives: Review of policy and services for people with a learning disability in Northern Ireland. Accessed May 12, 2023, from https://www.health-­ni.gov.uk/sites/ default/files/publications/dhssps/Equal%20Lives%20Report.pdf Nuffield Trust. (2023). Supporting people in employment (online). Accessed May 12, 2023, from https://www.nuffieldtrust.org.uk/resource/supportingpeople-in-employment#background Potts, M., & Fido, R. (1991). A fit person to be removed. Northcote House. Scottish Government. (2013). The keys to life: Improving quality of life for people with learning disabilities (online). Accessed May 12, 2023, from https://keystolife.info/wp-­content/uploads/2019/03/the-­keys-­to-­life-­full-­version.pdf Sunman, J. (2020). Our friends across the Pacific: Life for people with learning disabilities in Japan. Community Living, 33(4), 18–19. Walmsley, J. (2006). Ideology, ideas and care in the community. In J. Welshman & J. Walmsley (Eds.), Community care in perspective: Care control and citizenship (pp. 38–58). Macmillan. Welsh Government. (2018). Learning disability improving lives programme (Online). Accessed May 12, 2023, from https://gov.wales/sites/default/files/ publications/2019-03/learning-disability-improving-livesprogrammejune-­2018.pdf

11 Liberty and Justice Tracy Hammond

This chapter has been written by Tracy Hammond and the Working for Justice Group at KeyRing. Firstly, Tracy discusses the context to how legislation, rights, and the Criminal Justice System (CJS) work in the UK and the challenges this brings to people with a learning disability. She then outlines the excellent work KeyRing’s Working for Justice Group are doing to ensure people with a learning disability caught up in the Criminal Justice System are understood and are treated fairly.

Article 12—Right to equal recognition before the law and legal capacity on an equal basis with others. Article 13—Equal access to justice.

T. Hammond (*) Working for Justice Group, London, UK e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2023 L. Tilly, J. Walmsley (eds.), Rights in Practice for People with a Learning Disability, https://doi.org/10.1007/978-981-99-5563-3_11

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Introduction People with learning disabilities face major barriers in achieving the rights in UNCRPD Articles 12 and 13 which are the focus of this chapter. Article 12 addresses the right to equality before the law and the issue of legal capacity, which is the law’s recognition of the decisions a person makes. It lies at the heart of a human rights-based approach to disability and underpins the exercise of many other rights. Much of the focus on Article 12 in the academic literature has been about making choices. The UK’s 2005 Mental Capacity Act was widely welcomed. Its intention is well expressed in this judgement made by Justice Hedley in An NHS Trust vs P: Not to dress an incapacitous person in forensic cotton wool but to allow them as far as possible to make the same mistakes that all other human beings are at liberty to make and not infrequently do. (Alghrani et al., 2016, p. 317)

Although this quote uses some difficult words its meaning is clear. Let people make mistakes like anyone else. Some people say that the Act has not made much difference because workers are not confident to let people make their own decisions; they don’t trust them enough. The House of Lords (2014) thought that institutional mindsets were at the root of challenges: Our evidence suggests that capacity is not always assumed when it should be [and] … . The concept of unwise decision-making faces institutional obstruction due to prevailing cultures of risk-aversion and paternalism. (para 104)

Lucy Series (2015) explores this in her thesis, quoting Simon Duffy’s memorable phrase: We’d knocked down the walls … but we had taken the institution with us. (Series, 2015 p. 44)

She writes that power is always ‘on loan’ to people in social care settings. Workers can give it, and they can take it away. Unless people can complain and be heard, other people can make decisions for them and

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they can do nothing about it. It could happen in their own homes, in a Day Centre, or a supported living environment. That is why advocacy and a good complaints procedure are vital safeguards. Scott et al. (2020) think people working in social care need more training about the Mental Capacity Act (MCA). The fundamental principles of the MCA appear to be adhered to and embedded in practice. However, practitioners find mental capacity work remains challenging in its uncertainties. While calling for more training, they may also benefit from further MCA skills development and support to increase confidence and reduce apprehension. (p. 230)

What they are saying here is that people working with people with learning disabilities find it difficult to know when to allow people to make what they think are mistakes. I was struck recently when I was speaking with a woman I know to be a fierce advocate of people’s rights. She had taken a job as manager of a care home for adults. She had found that staff were telling people when to go to bed and get up, even though the company running it said they want people to have ‘choice and control’ at all times. She said she had taken steps to deal with this. But when I asked what would happen if someone wanted a partner to stay overnight she hesitated: In theory yes, of course, but I know there are some very vigilant parents out there which might make me think twice.

Many of the stories in this book are about being able to make choices and decisions. Kate Brackley (Chap. 5) talks about making the decision to become more independent by moving out of her family’s home. Karen (Chap. 4) tells us that she really likes being in control of things now her life is better: I Iike having the ability to choose what I wear and what I eat. I Iike being able to have full control of what I’d like to do each day. I Iike knowing that I doesn’t (sic) have to rely on the people. I Iike expressing my thoughts and opinions

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without being judged. I like going shopping and independently buying things. I Iike knowing that I have a voice and that people will listen to my wants and needs.

Karen says how important support from other people was, including her daughter, to get to this point. Article 12 is hard to achieve when people are surrounded by others who believe it is their right, even their duty, to make ‘wise’ decisions for them. Article 13 is about access to justice. We know that there are far more people with learning disabilities in the Criminal Justice System in the UK than there should be (Hyun et al., 2014). The Working for Justice Group convened by KeyRing have been doing brilliant, and much needed work, to get access to justice for people with learning disabilities. And there is a great deal that needs to be done. As they put it, language and processes are difficult and in a creaking system, getting support for those who need it is at best haphazard. It is all too easy for people to confess to things they did not do because they are confused or frightened. Research which asked people who have faced arrest and jail found similar things. This is what the researchers concluded: (i) study participants did not understand what was happening to them, or why, (ii) they felt alone, and they did not know where to turn, or to whom for support and (iii) they were uncertain about what to say or do. (Hyun et al., 2014 p. 308)

We know that sometimes police and others do the right thing. Isabelle (Chap. 4) said the police were brilliant when she called them to help her with Matthew when he was in crisis. But all too often as KeyRing’s work shows, this does not happen.

11.1 Working for Justice Group By Danny McDowell, Darron Heads, Grant Paton, Tracy Hammond from KeyRing.

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The Human Rights Act 1998 is clear that citizens have the right to legal challenge if their human rights are breached. In reality though, the UK’s legal system, particularly the Criminal Justice System, is part of the problem. Language and processes are difficult, and the system often fails people who have additional support needs. This is in contravention of Article 6 of the Human Rights Act 1998 which asserts the right to a fair trial. The Working for Justice Group is a group of people who are autistic or have a learning disability and who have experience of the UK’s Criminal Justice System. The group started in 2006 when the support provider KeyRing recognised that many people it supported had been in trouble with the Criminal Justice System and took part in a project led by the Prison Reform Trust. This project was called No One Knows; it aimed to understand how many people with a learning disability were in prison and the problems they faced. Whilst this project did a lot to raise awareness of the difficulties people encountered, the group recognised that the project was the beginning of a long journey towards the equality of experience enshrined within Article 14 of the Human Rights Act 1998, and Article 13 of the UNCRPD and decided to stay together when No One Knows finished. The aim of the group is to make things equal and fair for people who might have extra difficulty in the Criminal Justice System because of their autism or learning disability. Members do this by using their lived experience and expertise to talk about how things might be improved and made more accessible so that people with learning disabilities are not excluded or unfairly disadvantaged by the system and its processes. By doing this, members are exercising their rights as citizens to comment, challenge, and seek the improvement of public services. They meet regularly, usually four times a year in Birmingham. They act as a focus or reference group, often meeting with policymakers and speaking at important events. They look at ideas before they are put into practice and test out the accessibility of information and tools. They have also written and delivered a Learning Disability Awareness training day for people who work in the Criminal Justice System and helped to create

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easier to read information for people who find themselves going through the system. The group has worked with His Majesty’s Prison and Probation services, the Ministry of Justice and NHS England. They were involved in the Bradley Review which recommended the implementation of Liaison and Diversion services. Liaison and Diversion services are very important for this group because they aim to make sure that people get the right support and services if they get into trouble. They have fed into the work of others on the deprivation of liberty of people who remain for many years in long stay hospitals. This long-term hospitalisation is sometimes at risk of contravening Article 5 of the Human Rights Act and is discussed below. KeyRing supports the group by providing some staff time, and many activities undertaken by the group are made possible by grant funding or payment for the work that they deliver. It’s difficult to say how many people the Working for Justice Group have helped. We know that at one point they had trained key staff in every prison in England, but how many incidents the knowledge and empathy imparted saved, we’ll never know. However, staff move on, and training is an unending challenge. The group also spoke to Lord Bradley when he was preparing his report which recommended the implementation of Liaison and Diversion services across the country. How much they influenced the final report, and how many people this service will help over the coming years is difficult to know right now, but they can be assured that they have played their part. Likewise, there is currently an emphasis on neurodivergence in the Criminal Justice System. We know that the group contributed to the initial fact-finding but how this will play out remains to be seen. What we do know is that this group will continue calling for the rights of people with learning disabilities and autism to be upheld, and that they will do their best to ensure that the paths of people who come after them are smoother and better supported. The Human Rights Act People with learning disabilities who break the law can find themselves going down either a Criminal Justice or Mental Health route. The two systems interact with each other and even if someone is not given a hospital order from court, they can later be transferred if deemed necessary.

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Likewise, some people will be returned from hospital to prison if their condition is thought to have been effectively treated. Article 6 of the Human Rights Act protects the right to a fair trial. This includes: • The right to be told promptly of the reasons for their arrest and of any charge against them, in a language which they can understand. • The right to all relevant information, and representation and an interpreter where appropriate. However, in the UK the efficacy of this provision can leave a lot to be desired. We hear of people who don’t understand fully the charge against them or what is happening in court, and of people who have legal representation from professionals who don’t understand their support needs, or who don’t consider the impact of their disability on their plea or alleged offence. For example, people with polarised thinking patterns may admit to things because ‘they were there’, or ‘the laptop was their own’, rather than because they remember throwing the punch, or downloading the images. Whilst today, most people are correctly supported in the police station by an Appropriate Adult, few receive support with communication from a trained intermediary when it comes to giving evidence to the police or making a court appearance. We have known individuals who, when attending the police station as a victim of a suspected crime, have been provided with an intermediary, but who have received no such help when attending as a suspect. The Working for Justice Group argue that wherever people are in the Criminal Justice System, their support needs and ability to understand the process to which they are being subjected remain largely the same. This means that interpretation should extend to ensuring that people who struggle to understand the written word or legal jargon have the same right to interpretation services as people who struggle to understand these things due to English not being their first language. Another issue that potentially breaches the human rights of people with learning disabilities is the historical over-use of indeterminant sentences for public protection (IPPs). These sentences have now been discontinued but leave a legacy of people trapped in the system, sometimes unable to access the courses they need to prove to the Home Office that

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they are ready for release. Ruled against by the European Court of Human Rights, the idea was that people guilty of the worst crimes would not be released until they were considered safe to live in the community. However, they were used more freely than envisaged and now sit uncomfortably against the premise of people being innocent until proven guilty and get in the way of people enjoying full citizenship as they are essentially being locked up or released on licence in case they commit a further crime. People with learning disabilities may also find themselves placed in or sentenced to spend time in secure hospital settings. Whilst, for some people, these can be life-transforming, others have been detained for many years; in some cases, for far longer than they would have served if they had been given a custodial prison sentence. Following the Winterbourne View scandal in 2011, the Transforming Care agenda aimed to ensure that people were safely supported in the community. However, there have been significant challenges with the implementation of this programme. These have ranged from operational issues such as the availability of appropriate services, to legal concerns surrounding the deprivation of liberty of people receiving a conditional discharge from hospital. The failure of Transforming Care to meet its targets was the subject of a legal challenge from The Equality and Human Rights Commission in 2020. Whichever system people encounter, there remains significant work to ensure their Human Rights are upheld throughout. The Challenges that People with Learning Disabilities Face in the Criminal Justice System Equality law, the UNCRPD and the Human Rights Act should work hand in glove to ensure that people with learning disabilities are not discriminated against. This is especially important when consequences can have life changing implications such as the trauma of imprisonment. People with learning disabilities may end up in the Criminal Justice System as a result of being unable to follow processes imposed upon them by a society that sometimes fails to recognise their additional needs. Fixed penalty notices are an example of how quickly things can escalate and how disproportionate the results can be. Fixed penalty notices do not require attendance at a police station, and if the issuing Officer is unaware or unconcerned about someone’s

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Fig. 11.1  Example of a fixed penalty notice

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vulnerability there is no further opportunity to recognise a support need until criminal proceedings have been initiated (Fig. 11.1). Much is written about people taking responsibility for their actions, but at the same time, we do not always recognise that people also have rights to support, reasonable adjustments, and explanations. For example, people have the right to have accusations against them explained in detail and in language they understand (Article 6). The reality is that imperfect or partial understanding can make a big difference and possibly result in an unfair trial. I thought I had pleaded guilty to Actual Bodily Harm but then I found it was Grievous Bodily Harm which could have meant 18 years in prison. I didn’t understand that at the time. I didn’t know what aiding and abetting was when I was arrested.

The group that we most frequently see are people who not only have a learning disability but who may be described as having multiple disadvantages. Typically, people may also have a mental health problem, an addiction, or be struggling with insecure housing. It is not difficult to see how people might find themselves in this kind of complex situation. With eligibility for support services set so high and so much of life requiring high levels of digital and written literacy, people can easily get into a muddle with bills such as rent. The ensuing threats of eviction and insecurity of housing can cause anxiety which may then be self-medicated with drugs or alcohol. Members of the Working for Justice Group understand how rapidly and completely things can spiral out of control; several have been arrested for non-payment of bills and fines. At the time they were arrested some of those members would not have known how to make the payment or even been able to read the letter telling them that they owed money. I didn’t know where to go or how to pay my fine. I didn’t know I could go to prison for not paying a bill.

Other people get into trouble because they don’t understand how relationships work or because they are desperate for support.

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People with learning disabilities can fall prey to abuse, sometimes being coerced or tricked into committing crimes. Cuckooing is one such example, when people with hidden intent apparently befriend the individual, asking to stay a few nights and quickly taking control of their money, home, and life. When this happens the property is often used for illegal purposes and the wider community, sometimes unaware of the true nature of the relationship, becomes hostile to the individual who is in great need of help. I used to buy my friends; one day I bought myself a Drugs Lord.

Things can be very difficult once people are arrested. The Criminal Justice System is full of jargon, legal arguments, and long processes. Many people have entered the Criminal Justice System without having their learning disability or autism fully recognised or diagnosed. This means that people do not get the help they have the right to and this can result in being treated less fairly. The Police and Criminal Evidence Act 1984 has a lot to say about how vulnerable people should be treated by the Police. However, it is not always easy for an Officer to tell if someone has a support need and there are several reasons for someone not to disclose. For example, it may slow down the process whilst support from an Appropriate Adult is found meaning a longer stay in a claustrophobic cell, the individual may not know about their disability, they may not have sufficient trust in authority figures to tell anyone, or they may be so used to ‘cloaking’ their disability, that they don’t see the need to mention it. It is in an individual’s best interest to disclose as the Police should then ensure reasonable adjustments are put in place. These should include checking that the individual understands their rights and entitlements, receives support from an Appropriate Adult, and is referred to Liaison and Diversion if needed. The court system can be daunting for anybody. For someone who struggles to understand jargon and complicated processes it can be a truly frightening affair. Many autistic people or those with learning disabilities present a little differently to the general population. We have known cases where judges have attributed these differences to insolence or have

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believed a defendant when they have claimed not to be contrite, having never heard the word before. We have spoken to legal professionals who have not believed that someone in their 40s could have undiagnosed autism and we know of people who have been in and out of trouble for years without having their disability recognised. We know of people who have out of fear pleaded guilty to crimes they have later been found not guilty of, having already spent months in prison on remand. Prisons can be difficult for autistic people and people with learning disabilities. With bright lighting, clattering mealtimes, and noisy wings, sensory overload is a significant problem for many people. Then there are the rules, and a strict adherence to routine. Imagine living in a system governed by the clock when you can’t tell the time or being unable to see a loved one because you don’t know how to complete a Visiting Order request. We have also heard about people who have been placed on the Vulnerable Prisoners Unit. This can be problematic because this unit can also house some of the more predatory individuals in the prison. Additionally, we know of people who have suffered terrible bullying in prison, been coerced into relinquishing medical appointments and learnt prison rules through punishment because they couldn’t understand the written information they were given. I couldn’t read the prison rules, so I learnt them by breaking them!

Release once the custodial part of the sentence is over can also be fraught with difficulty. People are often released into areas a good distance from the prison making it difficult for prison and community services to liaise. With pressure on housing, people are often released into insecure accommodation, or even to no fixed abode, usually with signposting to attend the local housing department upon arrival. In prison people do not need everyday living skills such as the management of a tenancy, or cooking know-how; this means that skills may be lost, or support needs may not be recognised. Once back in the community, individuals are dependent upon the knowledge of professionals such

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as Probation Practitioners to gain a referral to Social Services for a Care Act assessment. Many people with learning disabilities speak well of their Probation Practitioners; however they also describe how at the end of their probation it feels a little bit like falling off a cliff as support suddenly ends. This group often struggle with signposting as it is difficult to make phone calls and remember appointments without support. Alongside the immediate and obvious unfairness experienced by individuals when referrals are lost or fail to happen, the legacy of mistrust of authority and feeling of hopelessness can have a lasting impact as a reluctance to engage with services becomes more entrenched with every apparent betrayal. The mainstream press also plays a part in disadvantaging people; portraying people in prison as frightening or different fuels discrimination and gets in the way of true and lasting rehabilitation. Once released, people face discrimination on multiple levels. Applying for a job if you have a learning disability is already daunting; if you also have to disclose a criminal record, this can be even more difficult. Prevention is written into almost every strategy or policy document. However, early intervention services are generally the first casualty of cutbacks, and the protective siloing of services that inevitably occurs during lean times compounds difficulties in finding the right support for people with complex lives. We frequently hear that there is an element of luck around receiving a diagnosis and how one eagle-eyed or determined professional can make a massive difference in someone’s life. Difficulties in managing relationships can be the cause of people getting entangled with the Criminal Justice System, as the following stories show. Fred’s Story During my childhood I went to a number of mainstream schools as I followed my father’s work commitments around the world. Throughout my time in education no one knew that I had a learning disability. My learning disability was eventually picked up aged 18 when I went for some support with my speech.

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When I got into trouble I was being supported by a housing provider. I misread a young lady’s signals and was accused of sexual harassment. I was given a stark choice; either to receive a caution, leave my supported accommodation, and start again in another town, or go through the Criminal Justice System. I chose to move although I didn’t believe I had done anything wrong because I thought the lady in question was consenting. I didn’t want to go through the trauma of a court appearance and all that was associated with that route.

Fred says that being in a mainstream school with a learning disability and without support was a disadvantage. He did not understand the sex education that he received, and issues around consent were especially hard for him at that time. It is sometimes difficult to read the intentions of another person if you have a learning disability. Fred maintains that early recognition of his disability, appropriate support, and the opportunity to learn more around issues such as consent at an early age would have prevented distress to the woman in question and the trauma of being uprooted from his community, voluntary work, and social network. Since getting into trouble Fred recognises that there are a host of difficult to recognise but important signals that he has never learnt about. For this reason, he avoids romantic encounters or relationships which, with proper support, could enrich his life. In some ways Fred has moved well beyond this incident but it had a long tail and appeared on enhanced DBS checks for several years meaning that he had to disclose when applying for work to support others with disabilities. Ben’s Experience Ben has been in trouble multiple times. He describes himself as someone who struggles to understand the intention of others, and says he has a tendency to buy his friends. The first time he was arrested was for aiding and abetting a burglary he didn’t know was happening. At this time, he was living independently with no support. Ben says that he didn’t know what aiding and abetting meant at the point of arrest. He found out when his social worker explained it to him later in the day. He had been befriended by a group a short while before the incident. When the offence occurred group members explained to him that they

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were just popping into a house to ‘get some stuff’. They asked him to stay outside and to let them know if anyone came. Ben fully believed they were going into a friend’s house and was extremely surprised when he received a tap on the shoulder from a Police Officer. On going to court, Ben’s learning disability was acknowledged but the judge reasoned that despite his disability, Ben knew right from wrong. He was consequently given a non-custodial sentence. The next time Ben got into trouble was following a move to a new town. Once again, he was receiving no support and was living in a Council flat. One day I met a man in the pub. This man started to drink with me and then explained that he needed somewhere to stay. I invited him to sofa-surf on my couch for a few days. Within a short while my flat was overrun by this man’s friends who were using my property as a base from which to sell drugs.

Ben found himself being coerced into making deliveries and was consequently arrested and charged with possession and intent to supply a Class A drug. At the time of the arrest Ben was too scared to ask for help and to explain to the Officer that he had lost control of his property and his life. This period of Ben’s life concluded when his property was raided in the early hours: I was arrested alongside the perpetrators, had my hands rip tied, and I was thrown into the back of a Police van.

Fortunately for Ben, at this time his vulnerability and the fact that he had been cuckooed was recognised and he did not face prosecution. He did however get evicted from his home as the Council were aware that under his tenancy the property had been used for drugs offences. After this incident, Ben received support and stayed out of trouble for many years. However, due to cutbacks to prevention services and Care Act 2014 eligibility criteria Ben’s support was reduced. At the time of writing Ben has recently finished a spell on probation for an offence which he says was precipitated by relationship misunderstandings, and

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unconnected to the above; he has been interviewed with no charges being made as both a suspect and a victim of financial abuse. How Unrecognised Support Needs Can Cause Difficulties Louis is a softly spoken gentleman who has served nearly 23 years in prison. Louis grew up in a large family, in Northern Ireland during the height of the Troubles. It’s true to say that his mother found it difficult to cope with the demands of so many children. His first prison sentence was for non-payment of a fine for being drunk and disorderly. When Louis was given the fine, no one checked whether he was able to read and write, budget or understand how and where to make payments. I learnt more about crime during that first short prison sentence than at any other point in my life.

It was in prison that he found out how to break into commercial properties and he used this knowledge for the next three decades, often getting caught in the process. He also discovered that in prison many of the difficulties that presented themselves on the outside were removed. At one point, without support and having been released with nowhere to live, I found life so difficult that I put a brick through my own solicitor’s window and called the Police myself.

Life in prison wasn’t a bed of roses; unable to read the regulations, Louis learnt prison rules by breaking them and being punished. He lived through two prison riots, at one point hiding in a kitchen hot-plate unit for three days. Prison did little to rehabilitate Louis; however shortly after his final release Louis met a concerned professional who took time to understand what was happening and supported him to seek assessment,

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Top Tips Since the publication of ‘No One Knows’ in 2006 much has happened and the emphasis on neurodivergent people in the Criminal Justice System is very welcome. However, there remains much to be done. • We need a definitive way of screening people for possible learning disabilities and autism as they enter or appear to be close to entering the Criminal Justice System. This needs to be backed up by full and prompt assessments for those indicated by the screening process, clear explanations for the individual and resources to support them. Current waiting times get in the way meaning that trials happen, pre-sentence reports are written, and sentences are served without people and decision-­ makers knowing they have a condition which affects the way they understand the world. Whilst not every appointment can be fast-tracked, those about whom life-changing decisions are being made should be prioritised. Health and criminal justice services need to work together to agree a pathway. • Recognition of neurodivergence is not enough; people need support. The Criminal Justice System, Housing and Social Care need to work together to ensure that people are well supported, and that prevention services are both available and effective. One of the difficulties we see is that agencies can look at the same individual through a different lens, for example, Social Care consider need, whilst Criminal Justice consider risk. In reality, risk increases when needs are not met and so we need to find common understanding to ensure we do the right things, in the right way at the right time. • All professionals need to have a working knowledge of the Care Act and to recognise the social vulnerability and complexity of need that is often experienced by people with a mild to moderate learning disability. We need to acknowledge that the presence of a learning disability in someone’s life is often not the primary reason for them to come into contact with services, but unless they receive support with their learning disability, other interventions are likely to fail. • The Human Rights Act gives everybody the same label; it recognises that we are all human. It is this approach that services need to take, performing equality impact assessments on processes such as fixed penalty notices so that people are not criminalised due to poor literacy or poverty. • Whilst we recognise that there is a place for specialist learning disability interventions, all mainstream services must be genuinely accessible for this group, as this will mean far fewer people slipping through the net or struggling with complex systems. This will inevitably require a highly personalised approach to supporting people, recognising that whilst tools such as easy read are useful, it is the staff’s ability to connect with someone and to help them understand fully what is happening that will reap the greatest rewards.

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confirmation of his learning disability and appropriate support. It was with a relatively small and inexpensive amount of housing-related, community-­based support that Louis turned his life around and focused his efforts on becoming the family man we see him as today.

References Alghrani, A., Case, P., & Fanning, J. (2016). Editorial: The mental capacity act 2005—Ten years on. Medical Law Review, 24(3), 311–317. https://doi. org/10.1093/medlaw/fww032 House of Lords (2014). Mental capacity act 2005: Post legislative scrutiny. London: The Stationary Office. Hyun, E., Hahn, H., & McConnell, D. (2014). Experiences of people with learning disabilities in the criminal justice system BJLD, 42(4), 308–314. Scott, J., Weatherhead, S., Daker-White, G., Manthorpe, J., & Mawson, M. (2020). Practitioners’ experiences of the mental capacity act: A systematic review. The Journal of Adult Protection, 22(4), 227–244. https://doi. org/10.1108/JAP-­02-­2020-­0005 Select Committee on the Mental Capacity Act. (2005). Mental Capacity Act 2005: Post-Legislative Scrutiny’ (2014) HL Paper 139. Accessed January 31, 2023, from http://www.publications.parliament.uk/pa/ld201314/ldselect/ ldmentalcap/139/139.pdf Series, L. (2005). The mental capacity act and the institutional domination of people with learning disabilities. Exeter: University of Exeter.

12 Equality and Recognition Jan Walmsley

This chapter is about equality, non-discrimination, and the right to participate in life as equals. It has contributions from Brighton and Hove Speak Out, the University of East London’s Inclusive Research team, Ger Minogue from the Clare Inclusive Research Group and Craig Hart. The introduction is written by Jan Walmsley and it features Articles 5 and 29.

Article 5—Equality before the law and non-discrimination. Article 29—Right to participate as equals in political and public life. Introduction This chapter is about some fundamentals of citizenship, the right not to be discriminated against (Article 5), and the right to take part in public and political life as a citizen (Article 29). It is also about ‘recognition’. Being recognised as someone who makes a contribution to their community, who is more than just a person with a disability and a user of J. Walmsley (*) Jan Walmsley Associates, Aylesbury, UK © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2023 L. Tilly, J. Walmsley (eds.), Rights in Practice for People with a Learning Disability, https://doi.org/10.1007/978-981-99-5563-3_12

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services. This is something the Convention does not directly address. But it is something that the people who contributed to the book told us really matters to them. In some senses the whole book addresses Article 5. The idea of human rights is that everyone can realise their potential. When you look at things with a human rights lens, disability does not make someone vulnerable by itself. It is the way we organise society that does that, as outlined in the social model of disability (Oliver, 1990). For example: • poor and inaccessible information, • lack of support, • a failure by services to make adjustments. All are examples of things which can lead to exclusion. In a rights-­ based perspective, everyone should have the same opportunity to access an event, a train, a shop, or the online environment. It’s just that some people need more support. There have been many examples of how this works in the book. The chapter on ‘Work and Employment’ shows that successful paid work for people is a two-way process. The individual has to have the drive, the willingness to do the job, the employer has to come part way by making what in the UK Equality Act 2010 are called ‘reasonable adjustments’. The Equality Act says there’s a duty to make reasonable adjustments if you’re placed at a substantial disadvantage because of your disability compared with non-disabled people or people who don’t share your disability.

https://www.citizensadvice.org.uk/law-­and-­courts/discrimination/ check-­what-­type-­of-­discrimination-­youve-­experienced/duty-­to-­make-­ reasonable-­adjustments-­for-­disabled-­people/ [accessed 15/3/2023] The Act makes it a duty of NHS and local councils to uphold and protect people’s rights. The British Institute of Human Rights produces a really valuable easy read guide to the Human Rights Act for UK audiences. https://www.bihr.org.uk/media/blajmbdx/easyreadhra.pdf Article 29 is about taking part in political and public life. For example being able to vote, to stand for election, to join or form organisations.

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There is, if you stop and think about it, a long way to go before that right is realised. There is some progress in that all UK political parties produce easy-to-­ read manifestos. But that does not extend to locally produced election materials. If you live in a residential home, you will need to rely on your paid carers to make sure you can vote. If you go to a political meeting, or a meeting of your local council, you need to understand the rules to be able to take part. The need for work on democratic rights is well illustrated in our first section, by Brighton and Hove Speak Out. Their Being Heard in Government Group (BHIG) works to make sure people can take part as equals in political life (Article 29 of the UNCRPD). They show that when it comes to the way democracy works, there is little understanding of the need for reasonable adjustments; for example to allow a person with learning disabilities time to prepare a response in a meeting. There is a long way to go before the vision of everyone having the same opportunity to take part in political life is realised. We’d love to see more groups like BHIG working on this. It is so important. This chapter, however, goes beyond the Convention in acknowledging the importance of recognition to people. Being seen by others beyond the disability really matters. As our stories from the University of East London and Ireland show. Finally, Craig Hart explains why it matters to him to raise money through running marathons.

12.1 Brighton and Hove Speak Out Being Heard in Government Group (BHIG) Dawn, Katie, Hannah, Rohan, Shannon Who We Are Brighton and Hove Speak Out is an independent advocacy charity that supports people with learning disabilities to speak up and take action about the things that matter to them. Speak Out offers a range of

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advocacy and community projects, including 1–1 case work and a network of self-advocacy groups. The Being Heard in Government Group (BHIG) is a user-led campaign group for people who want to be more involved in democracy and voting. The group campaigns on many issues including cuts to local services and welfare. Members have taken part in public events and demonstrations and can often be seen speaking at various different meetings. They have visited parliament and worked with local politicians to make election material accessible. The group have won two national awards for their work campaigning to make democracy and voting more accessible for people with learning disabilities. Dawn People with learning disabilities don’t have a democratic voice and need one. After Katie and Hannah read in the paper about proposed cuts to services, it got them really worried. They came to talk to me about it. We decided to go to a local Council Strategy Meeting to find out more about the cuts being proposed (me, Rohan, Sarah, Hannah, and Katie). We all trooped in and we were the only people there other than the Councillors. They said welcome and thanks for coming. They sat there and talked about the cuts. We realised that there was power in just being there as they discussed cutting learning disability services. We came away, we were not allowed to ask questions. The Councillors felt uncomfortable with us there watching and listening, you could see that. That was in December 2013. We came back to Speak Out and agreed to start a campaigning group. Our first name was Learning Disability Against the Cuts, but we changed it because Speak Out have been funded by the Lottery who were not comfortable with political campaigning. Calling it the Being Heard in Government group opened up what we could do. We saw that whole budget through; it took 2 weeks to pass and we went on demos early on. In that budget the cuts for people with learning disabilities were more severe than for others. That 2013 budget was horrific. It was a frightening time.

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One of the challenges when working with self-advocates with learning disabilities is that you need people to articulate the issues, but, as part of their disability, many people just are not articulate though they can speak very movingly from the heart. It is difficult to connect, there is no mass movement, we are not taken seriously. Our next step was to team up with Mencap’s election campaign working with Grace Eyre and St John’s1 to support people to get involved in the 2015 election to get a voice. The percentage of people with learning disabilities voting was low. In Brighton and Hove there are 6000 potential voters with learning disabilities, and our MP, Caroline Lucas, the only Green MP in the country, has a small majority. These votes could make a big difference. People were deterred from voting because dependent on support staff to even get to polling stations. Some people were being told who to vote for. We wanted to help people understand it is important to know their rights and get involved. At the general election we worked with all the main parties to create easy read leaflets. Labour and Greens did it, Conservatives and Lib Dems didn’t. The Being Heard in Government group is still going and has been looking at Brighton and Hove Council’s Five Year Plan. They produced it in easy read, but it still took a lot of time to work through it. The system is riddled with barriers. Rohan tabled a question 5 days in advance for a Council meeting; they read it out and gave a response, then Rohan was allowed to ask a follow up question. It was very difficult for him, doing it on the spot and there were no reasonable adjustments to give him more time. All the processes are difficult, without exception. We did training at the Labour Conference when it was here in Brighton, and the leader of Wimbledon Council came to see us to find out more. One of the things we are most proud of is accessible hustings. The first one in 2015, Council and General Election. In 2019 it was even on TV. ITV and BBC came. We’ve spoken at demos, public debates, also local and national press. This sort of thing needs to roll out more widely. It is so important.  Service providing organisations in Brighton.

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Rohan It started when I came for a job at Speak Out. I didn’t get it, but I was interested in politics, so they suggested I join BHIG. I had a young people focus originally (Fig. 12.1). Then I spoke at the Labour fringe in 2018. I was nervous. It went down very well. I was invited by Sam’s mum who is active in Wimbledon’s Labour Party. The Group has given people a voice. We had a big demo at the Town Hall against George Osborne’s austerity.

Fig. 12.1  Rohan (Being Heard in Government Group member) speaking at a general election hustings in Brighton in 2019

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Now I enjoy public speaking. Our incompetent Prime Minister2 can’t even answer questions. Katie I was thrilled to find Speak Out. I rang them in 2013. I asked What are you doing about Learning Disability week? I came in and it grew from there. The cuts came later in 2013. I did not want to speak my own words then. So Speak Out made up a speech which had some of my own words. Two years on, at the hustings for the election I speak for myself. Our key workers want us to shut up. ‘We’re not going to talk about that any more’, they say. Now I have got a place in politics. We are a hidden group, no one thinks about us. Too often we are right at the back and it makes you feel as if you are not important, you don’t matter. There are not enough of us, we are not part of the agenda. When I go to a Benefit Assessment I get scared every time I go. It’s horrible. They are condescending. Talk to us like children. It’s a waste of money anyway. You are not going to wake up one day to find you have not got a learning disability, are you? So why re-assess us constantly? Hannah We were at 3 debates where the leader of the Council at the time actively ignored us. We put our hands up to speak. He made it very clear. Ian had to trick them into giving us the mike. Me and Dawn had blue hair then. They looked at us, but they completely ignored us. The Chair looked at us the whole time. A lady came up to us in the toilet and she said how awful you were ignored, then one of the MPs came up to us and said the same thing. We were in the front row too, and we were waving our arms to say we wanted to speak. On the back of that, the Council ignoring us, the independent newspaper in Brighton and Hove invited us to a husting. They were always supportive, and they made time for me and Rohan to speak.

 At the time, Liz Truss.

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Fig. 12.2  Katie and Ian (Being Heard in Government Group members) campaigning about local cuts to Learning Disability services

The disability movement has been discriminatory too. Disability people do not represent us (people with a learning disability). Keep you in your place. Older people are also marginalised. I wanted to vote in the Euro elections. I was not supported to vote. Support staff are the gatekeepers. It should be part of their job to support us to understand politics and to vote.

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My proudest moment was when I was in the Brighton and Hove Independent front page and inside pages. Now we need to spread the word, get other groups to Be Heard in Government. Shannon I’m new to the group. Since Covid I got more interested in politics. When we got Covid it wasn’t clear how to deal with it. We got a bad deal. We were not listened to, forgotten about. The rules were different for us. Rules for one side and different for us. I just relied on my family which was quite difficult because we did not know all the facts. We felt cut off. It was all jargon. It’s really good to get our voice heard because there isn’t much opportunity, no one really speaks about it and with Covid you felt really trapped. Top Tips • Build relationships with your local MPs and Councillors and the local press. • Be ready to argue for reasonable adjustments to make it possible for people to participate. • Ask for accessible information about how to register and vote. • Ask for easy read manifestos from all the political parties, so people understand what they stand for. • Get support workers on side so they are willing to help people exercise their democratic rights.

12.2 Let’s Just Do It The second of our contributions to this chapter is by members of the University of East London’s Inclusive Research team. Members of this team explain how their earlier employment failed in various ways. It is particularly striking that two people got stuck in volunteering, until they started working in the research team. For others, their employment failed due to employers not making reasonable adjustments to enable

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them to work. I write this at a time when the UK Government is desperately seeking ways to tempt people back into the workforce. Forcing employers to comply with the Equalities Act might just be a useful first step to take. A standout for me in this contribution is the impact of digital inclusion. The pace was forced by the pandemic. And this team, already digitally savvy, found that ‘support’ was no longer needed to get online and take part in meetings. There is an interesting paradox, that we regard citizenship as dependent upon support—but being able to dispense with it is a liberation! Let’s Just Do it: Equality and Recognition, Why Does it Matter? Involving People with Learning Disabilities in Research Ajay Choksi, Baljit Kaur, Roselyn Weinberg, Satvinder Kaur Dhillon supported by Kanchan Kerai and Gosia Kwiatkowska, University of East London Introduction People with learning disabilities face many challenges to be recognised as equal citizens. These include a lack of understanding of their abilities, a lack of reasonable adjustments, and discrimination. In this chapter we discuss the rights of people with learning disabilities and outline ways to promote their successful employment as part of a research team. Firstly, we explain the background to the RIX Research and Media Centre and describe how our Inclusive Research team was formed. Secondly, we share our reflections on the Covid-19 pandemic and how this impacted on our Inclusive Research team. Next, we share the personal stories of employment from four of the authors with lived experience of learning disability. Then, we discuss our experiences in the context of rights to employment, equality, and recognition. We conclude with tips that can help other groups to support inclusive research and provide paid employment opportunities for people with learning disabilities. In sharing our work readers will see that people with lived experience can be involved in academic work. We hope our story will inspire others.

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Background RIX Research and Media (RIX) is a research and development centre based at the University of East London (rixresearchandmedia.org). The Centre was established by Prof. Andy Minnion in 2004 and was named in honour of Lord Brian Rix. Its purpose is to improve the lives of people with learning disabilities through the use of new media technologies. Covid-19 Pandemic and its Impact on Our Inclusive Research Team The Covid-19 pandemic of 2020/21 was a challenging time for everyone. For people with learning disabilities the pandemic meant restrictions on their usual activities and withdrawal of support. This presented an opportunity for Baljit, Kiran, and Ros to be involved in RIX projects as co-researchers without their support staff. Working online without their usual staff, they could work at their own pace. We met more often for shorter periods, which worked well for everyone. This greatly increased confidence, self-esteem, and sense of achievement. The pandemic provided opportunities for Kanchan, our administrator. Working remotely during the pandemic meant that Kanchan was much more involved in all the work of RIX as a research assistant and coordinator for our research projects. How We Wrote This When we found out that our proposal to write had been accepted, we were very excited. We met weekly, both in person and online. Gosia facilitated the discussions as we talked about how we first got together, what happened before the pandemic, and what happened during the pandemic. We also shared our stories; our experiences of employment, equality, accessibility, and inclusion; our feelings; and our rights. These sessions were recorded and transcribed by Kanchan. We talked about what we wanted to include. Kanchan organised all the transcriptions and worked together with the co-researchers on the first draft. Gosia wrote the introduction and conclusion and researched the references. As a group we discussed the content and top tips. Gosia and Kanchan combined all the discussions together to produce this chapter.

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Our Projects We try to ensure that our research projects, findings, and recommendations are relevant, useful, and accessible to people with a learning disability. Our approach is: • We look at the research question: what is it that we want to or need to find out? • We discuss what we already know about the topic. • We research the topic online to find out what other people have written. We use Google Scholar, using key words. We do this individually and in pairs. • We then meet together and look at what we have found—Gosia and Kanchan call this critiquing. We identify what is good, what could be improved, and what is missing from the current research. • We agree as a group what questions we are trying to answer. • We identify questions for surveys, interviews, and focus groups. • We often rehearse our approach with each other or other people with a learning disability within our networks. • We then carry out interviews and focus groups, transcribing and analysing our findings as we go along. • Finally, we work on the report for the funder. This will usually include an easy read version of the report and a RIX Wiki website. Discussion plays an important part in our research process. We share our thoughts before and after each session. For each research project, we have a project Wiki. Ajay documents each stage of the research process on a RIX Wiki website. Ros is responsible for jargon busting. That helps us all. Our Work One of our projects was Digital Unite, the Good Zoom guide. The timing was interesting as it started before the pandemic. When the pandemic hit, Ros was using the Good Zoom guide resources to train other self-­ advocates and staff from the day centre. Kiran and Baljit joined at this point and used the Good Zoom guide and the train the trainer resources

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to train people at the day centre as well as family members who lived locally, nationally, and internationally. Ajay, Ros, Kiran, and Baljit felt that everything they had learned on the Digital Unite project helped them survive the Covid pandemic. ‘We absolutely loved it.’ (Ros) ‘We were incredibly happy to receive our certificates in recognition of our work.’ (Kiran)

Our Rights: Equality and Recognition The UNCRPD asserts that people with learning disabilities should be treated with respect and dignity and they should be given the same opportunities as other citizens. But is this the reality? Our co-researchers share some of their early experiences. Ros’s Story Ros started her working career on a work placement with the fashion retailer C&A as part of the Youth Training Scheme (YTS). The YTS was introduced in 1983 at a time when youth unemployment in England was high. Its purpose was to provide on-the-job training for school leavers so they could find paid employment. Ros completed three YTS placements, the longest was 18 months. I did 18 months, I used to pack bags, I used to help with Christmas, I used to put up all the Christmas gifts and I worked very hard there, and I couldn’t understand why nobody would let me have a job there. … I then did a further 3 months in Boots, still no job.

The reality of the YTS was that although she could do the work and enjoyed doing it, the offer of a permanent paid job never came. Ros believes this is because [n]obody wanted to employ people with a learning disability, because they think we are not up to the job like everybody else.

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Ros believes that employers thought they could carry on offering unpaid voluntary work. If we are working, we should be paid for it. We should be paid like anybody else, we should be paid the minimum wage, we are as good as the next person, if not better. We might have a different way of doing things than everybody else. We should be able to be paid if we are working … it was when people with a learning disability were not really thought of as having jobs. … I didn’t feel happy, I felt that I should have been able to do what everybody else could do and I wasn’t given a chance.

Even after successfully completing three different YTS placements, she ended up without a paid job. The right to employment and equality promoted by legislation and the UNCRPD does not guarantee paid work for people, says Ros. I would probably say to all the employers, it doesn’t matter what organisation or whatever, but all employers they should give people with a learning disability a chance to have a job and to prove their worth.

Kiran’s Story After leaving college Kiran had better luck getting a job. But this did not last. I used to work, like doing the shelving, the cash, I found it fun, fun to do … but as my health deteriorated, I couldn’t use my legs and had to use a wheelchair … they were just like, get the job done. … I was like, I can’t do it. I don’t have the confidence to do it. So I quit the job. I didn’t want to work in Tesco no more. … I was like, I just want to retire now. I retired at age 24.

Kiran feels that what happened to her was wrong. She wanted to work and keep working, but the tasks she was expected to do were no longer suitable for her changing needs. In hindsight, she believes that her employer should have made reasonable adjustments as described in the UK’s Equality Act (2010), so that she could continue working. Her rights to employment were violated at this point.

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I’m like, my feet don’t work, my hands do work, hello. Any disabled person in a wheelchair can work. Let them try, give them a chance.

Baljit’s Story Baljit’s early work experiences started when she was still at school and she volunteered at the nurse’s office. Her role varied from organising files, updating records on the computer system to interpreting for parents who spoke Punjabi or Hindi. I had one year work experience when working with my school nurse, making sure all papers were all right with all the school children … because we had to use their own first names with the files and making sure it’s all up to date. Sometimes we were on the computer, depending on what she needed me to do … picking up the phone and answering the phone and if she needs help with speaking different languages, Punjabi, whether its Hindi or if they (parents— native speakers of other languages) needed help.

Unfortunately, there was no real prospect of her getting paid employment there. She went on to volunteer at a local charity shop to gain more experience. This employer did not make any reasonable adjustments for her, and unreasonable demands were made on her to do tasks that were beyond her physical capabilities. I was actually, working in a charity shop for free. … I had problems getting up the shelves and with my chair, it’s quite hard to do things like that like getting things up on shelves and down from shelves. … I wasn’t able to do what I was supposed to be doing because of my chair, because they told me to lift things up off the shelf, how do you expect me to do that?

Ajay’s Story Ajay can recall his earliest experience of looking for work after he finished college. He was not able to find a job himself, so he went to seek help and support from a Job Centre. So, I went to the employee services, went to the Job Centre. I asked them to help me out with getting ready for work skills. Doing the preparation, interview, making a CV and helping with job role skills. I went to the Job Centre Plus

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every day, I took a piece of paper, a card, signed the card and then looked for what my skill area is. I do like using the computer, using software, using MS Word, Excel and Paint. And then I found a different job in a different area and went on a work placement in London, doing customer service, till and typing in a clothing retail setting.

Ajay found the Job Centre support useful as it helped him to prepare for interviews, make his CV, look at his skills and knowledge, and think about his dream job. Ajay was able to identify his love of technology and computers and knew that this is what he wanted to do in the future. I don’t like writing, I prefer using the computer. I can do illustration and have other skills and I prefer using these skills.

However, the first work experience that Ajay was able to secure, in a factory doing manual work, he found unpleasant and difficult to do. What happened is a bad experience, I went to the manufacturing place, there is a huge factory, they are making a table, it’s huge and heavy, but you see my hands, struggling with my hands. I was trying to fix them, sometimes my hand is little bit shaky, my fingers, I couldn’t do this work easily. So it was a little bit of a bad experience for me.

Ajay was also concerned about the safety aspect of the role. No, it wasn’t for me, manufacturing is not right for me, some huge table, its heavy, about 10 or 11kg. I needed to look for safer work, and was struggling with this.

All the roles Ajay did at the beginning of his job search were voluntary. Eventually he did find paid employment doing something he enjoyed and wanted to do. They gave me experience in another job, as an Illustrator, in 2003–4. It was a transition project with Macintyre Care. There were two places, one in Hackney and one in Milton Keynes. I had a manager now and they gave me a job too and they gave me a pay slip.

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Discussions Recognition These stories show that although there may be a legal framework which champions the right to employment and promotes equality (the Equality Act, the United Nations Convention on the Rights of Persons with Disabilities), people with learning disabilities are not given the same chances and opportunities as those without disabilities. In 2022 the UN found that At every level of qualification, persons with disabilities are up to three times more likely than other citizens to be without a job yet wishing for work. We can work, there is nothing wrong with me; my legs don’t work but look my hands work. I can still work. (Kiran)

Why is it that people with learning disabilities are not offered paid employment? Why are their contributions not recognised, acknowledged, and respected? I would probably say the biggest thing about employers is that they think we can volunteer. They don’t think we should be paid … probably think that we can’t, that we’re not up to doing the job like everybody else … because they think we need time off if we’re not well … and we might need training, not like everybody else … we might need a bit more training than anybody else. (Ros)

The employment of people with learning disabilities should be based on their individual strengths, talents, and capabilities. People with learning disabilities should be given equal opportunities and respect, as well as support that can help them achieve their full potential. Recognition is very important to us because we should be paid for what we do. (Ros)

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Equality and Right to Paid Work We agreed that we have rights like everyone else, but the reality is that a lot of people with disabilities are not in paid employment, even though they want to be. We kept asking each other ‘why’? Because we have the right, it doesn’t mean we can all get paid employment. Some people with learning disabilities may not want to work and that is fine. But to have the option to work and earn your own wages is important, and is at the heart of the UN Convention. Anyone who can do something or make something can work. (Kiran) Everyone can do or make something. (Baljit) Paid employment is important to us because that means people value what we do; they value us. (Ros)

Employment offers a valued role; it offers independence, freedom, and choice, all essential for a meaningful life. To make this happen, employers must play their part. Employers are required by the Equalities Act to make reasonable adjustments to help people with learning disabilities have a job and stay in employment. Both Baljit and Kiran’s earlier experiences showed that employers did not make reasonable adjustments and this led to them leaving their jobs. Looking back the co-researchers realised that their families played a big part in helping them secure employment opportunities and provided them with the support they needed to do this. Ajay talked about his sister, how her support enabled him to find his permanent position at the RIX Centre. For Ros, it was an opportunity offered by her parents to work with them at the family store. For Kiran, it was her brothers who offered her paid work designing CD labels. Pay is not just about money, it is also about recognition, feeling proud, having independence and choice. Ajay remembers the day his first pay slip arrived in the post: When the post arrived in the morning, postman came with a letter, and it had a pay slip inside. When I opened it up, wow, I got my first pay. I was so relieved, pleased and happy now. And it was, yeah, that was exciting. … I didn’t spend the money.

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Kiran also remembers her first pay packet and what she did with it: I gave it to my dad, I was like, take the money, I don’t need it, you spend it. I gave it to my parents. I felt proud, at least I worked, and I gave them money. So, they can buy whatever they want.

Access to Technology One of the first things Baljit bought with the money she had earned was an iPad. Her tech skills and ability, and access to technology, are important. Without these she would not be able to work. I remember at start of Covid, and I was just lying about, because no one was going out and I was not being occupied to do stuff as there was nothing to do apart from staring at the TV. But this [being a co-researcher] keeps me busy.

Research during and after the pandemic highlighted a digital divide and digital exclusion of persons with learning disabilities (Seale 2022). Ros chose to use her income to purchase her own computer and had to be assertive in making this decision. For ages and ages, I wanted a laptop and [the manager from the day service that we attend] said to the three of us (Kiran, Baljit and Ros), you have earned X amount of money, what would you like? I said, I want a laptop. My mum, still to this day, questions why I have this laptop and I say to her, because I use it.

Access to technologies may not be seen as important by those who provide direct support to people with learning disabilities or those who help them manage their finances. Good self-advocacy skills are important for people to assert their wishes and preferences. Independent Travel Another skill that is important for employment is the ability to travel independently. With support from his family, Ajay is now able to use public transport alone. When he first started working, his dad helped him prepare.

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When I was doing preparation on my own, you see, my dad, the first time in the train, took me to an area and then I could go by myself. So now, I can go by myself, bus, train and now I move onto lifestyle and travelling. So now I am travelling by myself, independently.

Baljit and Kiran both travel independently using the mobility bus. Baljit explained: Just need to book a bus for me to go out, I’ll be out and about … makes me feel quite independent, just to be able to go out. (Baljit) My dad puts me on the bus, and I go myself. Someone helps to get me down. Which is good, I’m independent. … Makes me feel good, that I can do it myself. I love travelling. I told my parents, I was like, I’m going to Watford, I’m going there, I’m going Hayes, in Southall by myself. I wanna go fly by myself. They said okay, go. They gave me permission I was like, yay! So that is the fun bit. I can travel myself; I can see everything; I can see the world. (Kiran)

Ros’s parents prefer her only to travel by cab. Whilst Ros understands this worry, she also feels frustrated: I feel like its restricting as to what I can and can’t do. … I mean I’ve been offered to do things where I’ve had to turn it down, because they will not pay my cab, so I’ve had to … not just you guys, but other organisations, they will not pay my cab fare so I can’t go, so it’s restricting me. … I’d probably say, for me, my independence now depends on whether I can get a cab there and back, because of my travel situation. But I’ve learnt that, if I can’t get a cab there and back, that I can join in from home, if it’s feasible.

Having rights is not always enough, as people with learning disabilities often rely on support from parents and carers whose views can overshadow their own views and wishes. Baljit and Kiran use the mobility bus to come to the RIX Centre base. They have their own staff ID cards that allow them entry onto the campus. They are immensely proud of this: For me, being able to come down to the University is a big, big, big thing, cos that wouldn’t be happening otherwise. I didn’t know about it. … I’ve been going to college and back, but then I had friends with me. But this thing is a big thing, going on my own and getting to come down, that’s a big thing. (Baljit)

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Continuous Skills Development Continuous professional development allows employed people to grow and keep developing their existing skills or mastering new ones. The co-­ researchers recognised that their employment had enabled them to develop. Baljit reflected on her increased levels of confidence in communicating: You have given me a lot of skills, just to be able to Zoom in for meetings or anything like that, because I didn’t know how to do it before. … I’m talking a lot now, I’m not that shy, I don’t feel I can’t talk to anyone, even people that I don’t know too well; I was in my shell basically.

Confidence is one of the biggest barriers people identified. For me, I’d probably say self-confidence because this is me coming out of my comfort zone because I never dreamed that I would end up doing stuff like being a co-­researcher and all the other bits that I’ve been doing through the RIX Centre. The way it was, I used to go and ask for help. Now I’ve got this voice in the back of my head that says ‘I can do this’, ‘I’ve got this’. I can do things, I can do most things without having to ask for help. (Ros) Researching on things like, working for you guys was so good and you learn a lot from you guys, because you’re a teacher. And I learnt a lot from you [Gosia] researching on different projects. Like the Zoom one. That’s my favourite one … because you can teach your own family how to do it … that’s good, in your own language, and now they understand how to do it. (Kiran) [I]t’ll be not one project, not two projects, but all inclusive research. It’ll be Hospital Passports, Aspire Champions, Digital Unite, Zoom and many more. I look forward to these projects, with the same team of co-researchers, myself, Ros, Kiran and Baljit, and obviously you two. And now, the story of citizens and digital financial inclusion too which I find interesting. (Ajay)

Being a researcher has led to Baljit recognising herself as someone who gives as well as receives support: I’m finding out more things by helping others and getting help from people, but, in the same way, we’re learning at the same time. … We are changing ourselves, in a way, where we can stop doing what we used to and start changing ourselves.

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It has given Ros a sense of purpose, something to look forward to: I have to say, I have thoroughly enjoyed being a co-researcher, because, echoing what Baljit says, it’s an excuse to get out of bed in the morning.

Working in a team has created strong bonds of collegiate friendship, a network of help for each other that reduces the reliance on support staff. Ros put it like this: I would probably say that we have learnt that we can work as a team. That we do not need support from any of the staff, that we can support one another. … Yeah, as long as we can all work as a team, we don’t need to be supported because we can, us three, we can help one another.

Baljit commented: I know the staff is there, but sometimes they’re busy and we could chip in whenever they need help.

Baljit is spreading the word: Well, after the not getting paid for it, I was doing it for part of my, what’s the word for it, experience. I’m able to tell everyone else, that you can do it, if I can do it.

Ros is learning graphic design at Redbridge College I only have one philosophy ‘giving up is not an option’.

Ajay sums up why it is important for the voices of people with a learning disability to be heard in their own words: When we hear our voices, communication, story, life you’re experiencing and to hear, to share our story now, how do you feel about it, what did you remember about it in the past, what you like doing and what you don’t like doing. So that is important. Stories of Citizens.

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Conclusion People with learning disabilities in the UK have the technical right to work and be treated fairly in the workplace. They are protected by the Equality Act 2010. Under the Act, employers have a duty to make reasonable adjustments to ensure that people with learning disabilities can apply for and work in their roles. This includes making changes to the recruitment process, the physical environment, and the duties of the job. In addition, people with learning disabilities are entitled to the same rights as other employees in terms of pay, holidays, sick pay, and so on. Finally, employers must provide reasonable support and understanding to disabled employees and must comply with health and safety laws to ensure their employees’ safety. Top Tips • Understand the needs of employees with learning disabilities. –– Take the time to learn about the specific challenges and needs of employees with learning disabilities. • Provide accommodations. –– Consider reasonable adjustments that can help employees with learning disabilities perform their job duties more effectively. This may include things like changing roles, access to assistive technology, modified work schedules, or physical modifications to the workplace. • Offer support and training. –– Provide support and training to managers and co-workers to help them understand and support employees with learning disabilities. This can include training on disability awareness and how to communicate and work effectively with employees who have learning disabilities. • Create a positive work culture. –– Foster a work culture that values diversity and respects the needs of all employees. • Advocate for accessibility. –– Advocate for accessibility in the workplace and in the broader community. This may involve working with community organisations and policymakers to promote accessibility and inclusion for people with learning disabilities.

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There is a long way to go, but we have shown that investing in accessibility and inclusion helps to create an inclusive and welcoming environment for all, regardless of their ability. We hope that you find our stories of citizenship a source of hope and inspiration for people struggling to find their place in society. By understanding the stories of those who have gone before us, we can gain insight into how to create a better world for ourselves and for future generations.

12.3 Everything About Us … Without Us?? Ger Minogue Ger is a Founder member of the Clare Inclusive Research Group who have contributed to several different chapters. Ger is joint Communication Officer with IASSIDD Special Interest Research Group ‘Inclusive Research’. Here he talks about his education, the recognition he has achieved as an international researcher, and his campaign to have people like himself included in academic life—nothing about us without us. My name is Ger Minogue. I was born 19 March 1970  in Miltown Malbay Co Clare Republic of Ireland. I’m presently living in Glensheen Court, Brothers of Charity supported accommodation in Ennis. Most of my education has been segregated education. I was educated in a special school for children with learning disabilities called S___ in Ennis County Clare. It would’ve been more natural … to be educated in a school in my hometown. But when my mum and dad went to the Down Syndrome Association in Limerick, I was directed towards S___ special school. At the time this was seen to be the thing to do. As far as I know there was no special class at the local school but now there probably is. If we were all in the one class together maybe people with disabilities would hold people back. I did go to University College Dublin in later life and that was mighty. Still, we were all people with a disability in the one class. It was in 1974 I started school, when I was 5 and left in 1987, the year my sister got married. My two eldest brothers both went to St. Flannan’s

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College secondary school the same school as our President Michael D. Higgins after primary school in Miltown. They boarded there and my sister boarded in Kilrush. My youngest brother went to secondary school in Spanish Point, the local secondary school. I went into the children’s disability service. It was linking into my disability that I went to a special needs school. I was the only brother who did. The rest went on to school and then got jobs. I never had the notion of going to school with my brothers and sister. It was never mentioned. My dad was headmaster and rural science teacher at the tech school in my hometown Miltown. I was never taught by my dad but then none of my brothers or sister were either. In my way of thinking I think I was educated enough to go the way I did, to S___ and part of my disability again is because I’m a person with down syndrome that I needed special needs school. That’s the reason why I went there. Should Children with Disability be Educated Together with People Without Disability in General Education Services? That would be a big challenge and I know they are different kinds of challenges but I think it’s a good challenge for children with a disability going to the main school because you need to learn a lot more and know what’s going on. In terms of that if I can use dad again, he always gave me lots of hints about doing things like math’s. He taught me about math’s in a different way to the school I went to. He told me things that he thought would be useful for me. Through the Brothers of Charity I went for two years to University College Dublin. We did a Citizenship and Rights Course. We learned that all citizens have a right to education, but it didn’t say what education we had a right to get. That led to my doing vocational training and then also the inclusive research work we have done. Myself and my research colleague Joe McGrath told people about the research we did into the garden area (Minogue, 2007) and the coffee shop (Hogan, 2007). People came up to me afterwards after a presentation I did in Cape Town (at the IASSIDD World Congress 2008), people with a learning disability. They said, ‘You are an inspiration to us … telling us about the

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work you’ve done’. That is what education is all about, set people thinking. Presenting our research there was a highlight. The research work has affected my life because it’s all been worth it. I really enjoyed doing the research dramas. In one I was part of a couple wanting to leave home. That showed people that it was possible to get involved and think about doing dramas, doing research. It got people thinking about maybe having relationships themselves … and what might be standing in their way, like the law and what people might say like: ‘You’re not able’. But that’s wrong. It’s up to us. In 2010 we went to Rome (the IASSIDD European Congress). We presented research about travel, relationships and choosing your own home. We met delegates from all over the world … Russia, America, South America. In Zagreb we met a cranky old nun who got angry when we wouldn’t buy lace napkins from her market stall. We did our presentation about relationships there. They were delighted to see someone with a disability presenting but they looked a bit shocked when I started telling them about the relationships law in Ireland at the time. The 1993 Criminal Law Act which said we could not have sex. It turned out it wasn’t the Irish law that surprised them, it was they’d never heard people with disability talking about that sort of thing before. I think that was an education for them. We also did a presentation in Tel Aviv although my mum and dad … thought that something bad was going to happen there on account of the politics and that. But we did a very good presentation. And I brought a plaque back from there to thank them for allowing me to go. And it was there again I was asking, ‘Where are the people with learning disability? It’s meant to be a conference where we say “Nothing About Us Without Us” and here it’s more like its “Everything About Us Without Us!”’ Then we were in Finland and we met actors with a learning disability in the national soap opera there. That had me thinking there should be more actors like that in Irish soaps. The man who ran the restaurant we ate in didn’t like me singing there. He threw us out! Apparently they don’t sing in bars over there. Our hosts were really embarrassed. You can’t throw an Irishman out of a bar for singing! Still we had a good singsong when we left there! You have to

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enjoy yourself at these places and have the craic. It’s what it’s all about. The exchange was about transitions from home to school, school to work, home to independent living. I told them about school and then moving to the Brothers day services and then into my work as a researcher. In 2013 we got invited over to Perth in Scotland. The Scottish inclusive research networks was just starting up. They wanted to hear how we got going in Ireland. I tried a kilt on in Perth on account of my sister-inlaw’s children, they all came from there. I thought they might like to see me in a kilt. It was there we first heard about ‘Dates and Mates’ which was great because we brought that idea back to Ennis. We’ve had our own speed dating nights since. With Dates and Mates it takes the pressure off the idea of ‘looking for a girlfriend’. You might meet a date or they might be just a mate. That was a good idea and we’ve done a few ‘Dates and Mates’ here in Clare since then. By going on these trips you always pick something up and you probably leave something behind as well. It would set you thinking. In the last couple of years I’ve been doing a Vocational Training course. We did Self-Advocacy, Drama, Computers Awareness, Community Participation, Managing Personal Finance, Tourism Visitor Clare. All the people on the course were people with a disability. It was the same with my class at UCD in Dublin. Although in Dublin we were at the University and there were people with disability and people without disability there as students. It would have been better with other students doing other courses … combined together. Ger’s Top Tips • Don’t sing in bars in Finland. • We should all be educated together. • It’s great to be recognised for our work—for me that is research work.

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12.4 Craig Hart: The Great North Run Our final contribution to this chapter is by Craig Hart. Craig has long been an active self-advocate, and chair of the Open University’s Social History of Learning Disability Annual Conference. Here he explains why he has taken to half marathons in his more mature years. Hello everyone. I’d like to share my story of the marathons I do in Newcastle. A friend of mine does marathons and I decided to join him. He is with the Northampton Road Runners. I started training. Then I got in touch with Great Ormond Street Hospital and started to raise money for them. Now I have done 6 half marathons. 13.2 miles. Newcastle to South Shields. I’m hoping to keep on and do it every year. I like to do it in fancy dress. Hopefully I will be on TV again. This year (2023) I am doing one in Edinburgh. I want to raise money to support people to go to the Conference I chair at the Open University in July. If they need the money to get there or for a hotel for the night, they can just ask me. It makes me feel proud to do the half marathons. It is important to me to raise money for other people who need it. Craig’s Top Tip • Just Do It!

Conclusion This final chapter illustrates the importance of recognition to people, going beyond the UN Convention. Research has been featured in two of the contributions, but we need just to think back to Emma’s career as a dancer to remember that there are many ways for people to gain recognition as contributing citizens. I am minded here to think about social role valorisation, which was a dominant set of ideas in the 1980s in western countries (Wolfensberger & Tullman, 1989). Social role valorisation states the importance of

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‘valued social roles’, the sort of roles described by people contributing to this chapter. In this chapter people have highlighted their roles as students, researchers, campaigners, voters, all roles associated with citizenship. Wolf Wolfensberger who coined the idea of social role valorisation argued that valued social roles are necessary to counter devaluation of people because of their learning disability label. On the basis of this chapter, it is hard to disagree with him. SRV can encourage tokenism—giving people roles, like researcher, in order to enhance their social image. However, as the contributions to this chapter show, there is an interaction between having the role—researcher, campaigner—and learning how to perform it well. Confidence and having people believe in you is key. At times even more important than that ubiquitous word, support. And that paves the way to make citizenship feel real.

References Hogan, B. (2007). Joe’s coffee shop. Dublin: University of Dublin. Minogue, G. (2007). The garden story. Dublin: University of Dublin. Oliver, M. (1990). The politics of disablement. Macmillan. Seale, J. (2022). It’s not all doom and gloom: What the pandemic has taught us about digitally inclusive practices that support people with learning disabilities to access and use technologies. British Journal of Learning Disabilities, 51, 218–228. Wolfensberger, W., & Tullman, S. (1989). A brief outline of the principle of normalization. In A.  Brechin & J.  Walmsley (Eds.), Making connections: Reflecting on the lives and experiences of people with learning difficulties (pp. 211–219). Hodder and Stoughton.

13 Final Words from the Editors Liz Tilly and Jan Walmsley

It has been a wonderful experience to work with so many people with important tales to tell. When we started on this road, we had not expected such a straightforward task. Everyone has been so keen to contribute, to fill in forms, manage the bureaucratic challenges of publishing etc., so that our job has been easy. At the beginning we hadn’t envisaged there would be so many contributions from so many individuals and from selfadvocacy and user-led groups. Some stories are of ordinary lives which demonstrate resilience and some from people who have achieved special things. But all are valuable stories of citizenship. Our book includes contributions from over 100 authors; we feel a significant achievement and a celebration of citizenship.

L. Tilly (*) Building Bridges, Halesowen, UK e-mail: [email protected] J. Walmsley (*) Jan Walmsley Associates, Aylesbury, UK © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2023 L. Tilly, J. Walmsley (eds.), Rights in Practice for People with a Learning Disability, https://doi.org/10.1007/978-981-99-5563-3_13

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13.1 What Does the Book Teach Us? The most obvious thing is that it is possible for people with learning disabilities to enjoy a good life and benefit from the rights enshrined in the UNCRPD. It takes imagination, determination and energy, but it can be done. And the benefits are huge. And yet only one or two of the positive stories in the book come from conventional services. To achieve their dream of citizenship people have been supported by their families, by advocacy groups, by academics and researchers, not by the people paid to ‘care’ for them. This should not be a surprise, though it is unfortunate. The exceptions are interesting. The wonderful life stories from Ireland were collected by Rob Hopkins whose post is funded to do research by the Brothers of Clare, one of the major service providers in Ireland. The other is Emily whose teacher at school worked with her family and Nicola to tell her story, as far as possible in her own language. Nothing came from conventional adult social care services. It is not only in this respect that the odds are stacked against people. The institutions of the state, the benefit system, the way Universities are funded, even schemes like Access to Work which at first sight look helpful, are barriers to people achieving citizenship. Why does the UK have one of the lowest employment rates for people with learning disabilities? Maybe because of the rigidity of the benefit system which puts people off taking a job. This problem has been known for many decades, yet even at a time when there are many job vacancies in sectors like care, catering and farm work, all potentially suitable for people with mild learning disabilities, the barriers remain. Time and again, people are faced with low expectations. The education system in particular seems to give students a sense of failure, which can take years to overcome. This theme stands out in the Irish life stories threaded through the book. Without exception, these life stories tell a tale of being written off at an early age. It takes courage, resilience and not a bit of luck to win back a sense of confidence. An important message here is that people need access to learning for a life time.

13  Final Words from the Editors 

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Several contributors comment that people outside the service world are more receptive to inclusion than people inside it. A refreshing ‘why not?’ attitude characterises the dance academy in Emma’s story (Chap. 2) and the story of George getting not one but several different jobs (Chap. 10). Universities can foster positive citizenship. The University of Cork offers people with intellectual disabilities the opportunity to be a student in a mainstream setting. The University of East London provides highly valued paid work, and the status of holding a staff card. The top tips from people with a learning disability are especially encouraging, many reaching out to other people with a learning disability to have a go or to stick with it. Some offering practical tips about being safe and sharing what works for them. A large number also call for more accessible information, in the form of easy read, and better signage in public places. Many top tips from professionals call for change and better opportunities. We hope the book will be an inspiration to those who read it, to let people tell their stories and for us all to be more proactive in supporting people to enjoy their lives and live full and safe lives in the community. We end with our own top tips; • Make sure all colleagues and policymakers know about the UNCRPD! • Remember human rights are universal, and we all have a duty to make sure everyone’s rights are upheld. • Challenge any poor practice where services and supports are not enabling people to enjoy their human rights. • Celebrate stories of citizenship in your service and community.

Abbreviations

ATU Assessment and Treatment Unit A&E Accident and Emergency Department CQC Care Quality Commission DNACPR Do Not Attempt Cardiopulmonary Resuscitation DWP Department for Work and Pensions LeDeR Learning Disability Mortality Review Programme PA Personal assistant PMLD Profound and multiple learning disability UNCRPD  United Nations Convention on the Rights of Persons with Disabilities

© The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2023 L. Tilly, J. Walmsley (eds.), Rights in Practice for People with a Learning Disability, https://doi.org/10.1007/978-981-99-5563-3

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Appendix

Weblinks to the UNCRPD Main Version https://www.un.org/development/desa/disabilities/convention-­on-­the-­ rights-­of-­persons-­with-­disabilities/convention-­on-­the-­rights-­of-­persons-­ with-­disabilities-­2.html

E  asy Read Version https://www.equalityhumanrights.com/sites/default/files/uncrpd_ guide_easyread.pdf

© The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2023 L. Tilly, J. Walmsley (eds.), Rights in Practice for People with a Learning Disability, https://doi.org/10.1007/978-981-99-5563-3

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List of Contributors

Editors Dr Liz Tilly Prof Jan Walmsley

Individuals Dean Beach (Self-advocate representative, speaking on behalf of others from his own experience) George Burt (Self-advocate) Isabelle Garnett (Mother) Matthew Garnett (Son) Craig Hart (Self-advocate) John Hersov (Independent facilitator/consultant) Emma James-Jenkinson (Creative Director, Everyone Move CIC) Lynn James-Jenkinson (Emma’s Mum & Director for NWTDT & CEX for Pathways Associates) Prof Kelley Johnson (University of New South Wales)

© The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2023 L. Tilly, J. Walmsley (eds.), Rights in Practice for People with a Learning Disability, https://doi.org/10.1007/978-981-99-5563-3

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300 

List of Contributors

Sal Lapsley (BILD for the Future Member) Sarah Wilkinson (SpeakEasy NOW)

Groups Barod Bryan E Collis (Researcher, Barod CIC) Samantha Hall (AssistmyLife worker, Barod CIC) Claudia Magwood (Researcher, Barod CIC) Simon Rice (Researcher, Barod CIC) Simon Richards (Researcher, Barod CIC)

Brighton and Hove Speak Out Emily Barratt (Deputy CEO, Brighton & Hove Speak Out) Being Heard in Government group members:   Shannon Caldwell (Self-advocate)   Hannah Child (Self-advocate)   Katie Lord (Self-advocate)   Rohan Lowe (Self-advocate and Speak Out Trustee)   Dawn Thorpe (Self-advocacy Coordinator)

BILD Lindsey Allen (British Institute of Learning Disabilities (BILD)) Kate Brackley (British Institute of Learning Disabilities (BILD))

Building Bridges Training Kraig Bayliss (Self-advocate) Nazia Hussain (Self-advocate) Chrissie Timmins (Self-advocate)

  List of Contributors 

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Trevor Pallett (Self-advocate) ‘Karen’ (Self-advocate) Satnam Singh (Self-advocate) Kevin Southall (Self-advocate)

Cardiff People First Dawn Gullis (Ambassador Cardiff People First) Ashlea Harris (Director Cardiff People First) Joanna Jones (Health Care Assistant seconded from Cardiff People First to Cardiff & Vale University Health Board) Zarah Kaleem (Community Voices Development Officer Cardiff People First)

CASBA Brian Cole (CASBA Ambassador) Ann Cole (CASBA Ambassador) Mark Coppage (Ambassador) Pat Geobey (CASBA Ambassador) Becky Jones (CASBA Performance and Volunteer Coordinator) Janet Kane (CASBA Ambassador) Christine Spooner (CASBA Ambassador) Martin Spooner (CASBA Trustee and Chair of Ambassadors) Doris Tweede (CASBA Ambassador)

 lare Inclusive Research Group(Funded by Brothers of Charity C Services Ireland) Lisa Acheson (Advocate Researcher) Brian Hogan (Advocate Researcher) Rob Hopkins (Advocacy and Inclusive Research Officer) Joe McGrath (Advocate Researcher) Ger Minogue (Advocate Researcher)

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List of Contributors

Orla McMahon (Advocate Researcher) Pauline Skehan (Advocate Researcher)

Dance Syndrome Ellie Bamber (Dance Leader) Jen Blackwell (Founder Director of Dance Syndrome & Dance Leader) Sue Blackwell (Co-Founder & Chair) Sarah Calderbank (Project Coordinator) Peter Pamphlett (Dance Leader & Director) Becky Rich (Dance Leader) (told by Simon Rich) Dorothy Shepherd (Dance Leader) Donna Wheeldon (Dance Artist)

KeyRing Tracy Hammond With members of the Working for Justice Group (names withheld for privacy reasons)

People First Dorset Emily Burr (Management Committee, People First Dorset) Ellie Crawford (Management Committee, People First Dorset) Chris Harvey (Member of People First Dorset) Mike Hellin (Member of People First Dorset) Tessa Hellin (Member of People First Dorset) Laura Kerr (Manager, People First Dorset) Kerry Martin (Project Worker, People First Dorset) Richard Maxfield (Trustee, People First Dorset) Hazel Morgan (former Co- Director of The Foundation for People with Learning Disabilities and Trustee of People First Dorset) William Parmiter (Management Committee, People First Dorset)

  List of Contributors 

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RIX, University of East London Mr. Ajay Choksi (Technical Assistant, Wiki Master, co-researcher) Ms. Satvinder Kaur Dhillon (Self-advocate, co-researcher) Ms. Baljit Kaur (Self-advocate, co researcher) Mrs. Kanchan Kerai (Senior Administrator, Research Assistant) Ms. Gosia Kwiatkowska (FHEA, Director, Senior Lecturer, Lead Academic Researcher) Ms. Roselyn Weinberg (Self-advocate, co-researcher)

Sunderland People First Gavin Barr (Self-advocate) Lauren Baynes (Self-advocate) Dr Rohhss Chapman (Psychotherapist, UKCP, MBACP) Andrew Cowe (Self-advocate) Andrew Fox Karen Hughes (Family carer) Phil Hughes (Self-advocate) Samantha Jamieson (Development Worker) Ian Middleton (Self-advocate & Director) Matthew Moon (Self-advocate & Director) Stephen Patterson (Development worker) Matty Prothero (Self-advocate & Director) Toni Anne Wood (Self-advocate) Lou Townson (Self-advocate)

Surviving Through Story Paul Christian (Researcher, Writer, Self-advocate) Danielle Garratt (Speak Out Project Worker & Self-advocate) Vicky Green (Self-advocate) Nicola Grove (Independent Researcher) Sue Ledger (Visiting Research Fellow, The Open University, UK)

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List of Contributors

Noelle McCormack (Visiting Research Fellow, The Open University) Dr Liz Tilley (Senior Lecturer in Health and Social Care, Learning Disability)

Travel Buddy Scheme Pam Bebbington (Travel Buddy Trainer and MLMC Consultant) Keith Filleul (Travel Buddy Trainee) Rachael Fraser (Travel Buddy Coordinator at MLMC) Dean Gimigliano (Travel Buddy Trainer) Charlene Mileham (Travel Buddy Trainer)

University College Cork Alan Burke (Student) Brian Cull (Student) Ciara Dineen (Student) William O’Donovan (Student) Dr Nicola Maxwell (UCC) Kayleigh Twomey (Student) (Kayleigh was supported by Personal Assistants Sinéad Keane and Aisling Kelleher).

Walker Family Lucy Cook (PMLD Teacher) Nicola Grove (Independent Researcher) Theresa Stephenson (Carer and Teaching Assistant) Andy Walker (Father of Emily) Emily Walker Victoria Walker (Mother of Emily)

Index1

A

C

Advocacy, 3, 45, 51, 56, 64, 66 , 77, 87, 89, 90, 97, 141, 149, 150, 186, 191, 204, 205, 245, 263, 264, 292

Charity, 2, 18, 50–52, 56, 58, 79, 93, 114, 142, 194, 235, 237, 263, 275 Children, 4, 14, 15, 18, 19, 24, 26, 32, 51, 53, 61, 63, 69, 70, 72, 87–90, 94, 119, 130, 149, 150, 153, 155, 157, 159–161, 164, 165, 202, 203, 233, 258, 267, 275, 284–287 Choices, vii, viii, 2, 5, 20, 29, 35, 45–48, 51–56, 77, 81, 100–104, 106, 107, 109, 111, 115, 142, 160, 161, 163, 168, 170, 178, 184–186, 199, 244, 245, 256, 278

B

Benefits, 48, 53, 54, 56, 57, 69, 101, 107, 108, 114, 157, 169, 199, 209, 210, 212–215, 218, 224, 227–229, 232, 236, 241, 245, 267, 292 See also Welfare benefits

 Note: Page numbers followed by ‘n’ refer to notes.

1

© The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2023 L. Tilly, J. Walmsley (eds.), Rights in Practice for People with a Learning Disability, https://doi.org/10.1007/978-981-99-5563-3

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306 Index

Citizenship, vii, 2, 10, 15–17, 19–24, 26–28, 38, 41, 46–48, 103, 250, 261, 270, 284, 289, 291–293 Communication, 10, 21, 22, 27, 57, 61, 96, 99, 150, 167, 176, 177, 220, 229, 234, 249, 282 Community, vii, 14–16, 19, 22, 23, 27, 32, 40, 46, 47, 49, 55–57, 59–65, 69, 72, 75–77, 81, 82, 85, 87, 89, 90, 94–97, 99–108, 117, 128–133, 136, 139, 161, 168, 170, 174, 183–206, 209, 211, 221–236, 239, 250, 253, 254, 256, 260, 261, 264, 283, 293 Covid, 54, 67, 93, 111, 124, 126, 127, 129–131, 134, 139, 185–189, 191–194, 196–198, 223, 233, 235, 269, 273, 279 Crime, 107, 249, 250, 253, 254, 258 Criminal justice, 4, 248, 259 Culture, 18, 96, 128, 152, 184, 244, 283

Employment, 60, 71, 101, 125, 185, 197, 203, 204, 209, 210, 212–214, 219, 232, 235, 237, 240, 269–271, 273–279, 281, 292 Exercise, 15, 19, 48, 144, 194, 244, 269 F

Family, 3, 5, 14, 18, 21, 23–25, 27, 31, 38, 39, 47, 56, 60, 62, 63, 69, 71, 77, 78, 89, 90, 93, 96, 100–105, 107, 109, 111, 115, 117, 119, 120, 129, 131–134, 137, 138, 141, 147–165, 185, 187, 191, 192, 201, 210, 221, 222, 233, 237, 245, 258, 260, 269, 273, 278, 279, 281, 292, 304 Friendship, 23, 66, 100, 104, 152, 158, 185, 194, 196, 282 H

D

Dance, 3, 45, 48, 56–61, 67, 68, 71, 195, 202, 293 Democracy, 19, 20, 263, 264 E

Education, 4, 14–41, 63, 66, 69, 94, 96, 97, 138, 140, 202, 203, 205, 234, 255, 256, 284–287, 292

Hate crime, 76, 172 Health, 3, 4, 19, 40, 50, 52, 59, 61, 65, 69, 77, 85, 86, 96, 109, 123–145, 158, 160, 187, 197, 212, 218–220, 226n3, 238, 252, 259, 274, 283 Housing, 53, 82, 85, 86, 102, 109, 112, 114–120, 197, 198, 221, 233, 252, 254, 256, 260

 Index  I

Inclusive research, 6, 38, 65, 66, 87, 90, 205, 212, 270, 271, 281, 285, 287 Independence, 2, 15, 20, 32, 35, 46, 66, 100–102, 161, 162, 174, 184, 192, 218, 230, 231, 236, 278, 280

307

Profound and multiple learning disability (PMLD), 16, 18–20, 26, 27, 196, 304 Public transport, 36, 54, 82, 167–170, 172, 176, 180, 185, 240, 279 R

J

Justice, 10, 243–259 L

Law, 3, 19, 35, 41, 45, 93, 103, 243, 244, 248, 250, 261, 283, 286 Leisure, 86, 183, 188–189, 194 Lesbian, gay, bisexual, and transgender (LGBTQ), 26, 150–152 M

Mate crime, 76–80, 227 Mobility, 167, 168, 178, 215, 280 Money, 5, 27, 47, 48, 50–53, 60, 79, 80, 85, 88, 96, 103, 104, 117, 119, 120, 125, 152, 170n1, 171, 178, 179, 184, 197, 198, 201, 202, 209–241, 252, 253, 263, 267, 278, 279, 288 P

Parenthood, 147, 148 Police, 51, 76, 79, 80, 82, 92, 110, 156, 212, 224, 232, 246, 249, 250, 253, 257, 258

Relationships, 4, 5, 9, 41, 77, 90, 100, 116, 128, 133, 136, 139, 147–154, 156, 157, 164, 165, 172, 252, 253, 255–257, 269, 286 Religion, 148, 199 Rights, 1, 13, 45, 75, 99, 123, 147, 167, 172, 183, 209, 243, 261, 292 S

Safeguarding, 76–78, 129 Safety, 4, 76–97, 138, 163, 179, 197, 238, 276, 283 School, 9, 14–16, 18–21, 23, 26–29, 38–41, 50, 54, 57, 59, 63, 64, 66, 69, 70, 77, 87–92, 94–96, 119, 136, 151, 152, 155, 156, 158, 165, 201–204, 220, 235, 255, 256, 273, 275, 284, 285, 287, 292 Self-advocacy, 3, 46–48, 55, 56, 101, 106, 114, 117, 123, 128–130, 132–134, 139–141, 150, 167–170, 179, 192, 212, 214, 215, 223–226, 233, 241, 264, 279, 287, 291, 300 Social services, 77, 79, 149, 157, 210, 255

308 Index

Sport, 49, 86, 136, 183, 188–189, 194, 202 Student, 3, 15, 16, 28–36, 34n6, 38, 40, 41, 50, 62, 95, 129, 136, 167, 169, 170, 201, 205, 212, 287, 289, 292, 293 T

Training, 19, 40, 41, 55, 58, 59, 62, 65, 68, 72, 81, 83, 85, 96, 107, 124, 127, 129, 131, 133–135, 138, 140, 145, 149, 152, 168, 175, 178, 179, 182, 187, 203, 204, 211, 212, 214, 216, 220, 221, 224, 226, 229, 232, 245, 247, 248, 265, 273, 277, 283, 285, 288, 300–301

Transport, 34–36, 52, 60, 82, 113, 167, 169, 172, 177, 182 Travel, 23, 54, 58, 59, 230, 279–284, 286 V

Voice, 5–7, 10, 20, 25, 33, 40, 46, 57, 66, 71, 94, 95, 106, 114, 124, 126–128, 160, 162, 173, 187–189, 192, 198, 220–222, 229, 246, 264–266, 269, 281, 282 Voting, 264, 265 W

Wellbeing, 76, 123–145, 179, 185, 219 Work, 3, 14, 50, 81, 99, 123, 149, 169, 186, 243, 262, 291