Cultural Heritage, Ageing, Disability, and Identity: Practice, and the Development of Inclusive Capital 9781138555372, 9781315149462

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Cultural Heritage, Ageing, Disability, and Identity

Cultural Heritage, Ageing, Disability, and Identity examines the effects of disability and ageing on engagement with cultural heritage and associated cultural identity formation processes. Combining theory with detailed case study research, it unpicks both the current state of play and future directions. The book is based upon detailed case example research on both the selfreported individual experiences of people with disabilities engaging with cultural heritage, and the accessibility approaches of cultural heritage institutions themselves. Hayhoe grounds the analysis in a theoretical and historical overview of disability and inclusion. He interrogates the various ways in which identity is formed through interaction with cultural heritage, and considers the differences in engagement with cultural heritage amongst those who develop disabilities early in life compared to those who acquire disabilities later in life. His conclusions offer insights that can help improve the provision of cultural heritage engagement to all people, but particularly those with disabilities. Cultural Heritage, Ageing, Disability, and Identity is key reading for students and scholars of cultural heritage, visitor studies, and disability studies, and will also be of interest to other subject areas engaging with issues of accessibility. It should also be read by institutions looking to improve their accessibility strategy to engage broader audiences. Simon Hayhoe is a reader in the Department of Education at the University of Bath, UK, and a center research associate in the Centre for the Philosophy of Natural and Social Science, London School of Economics and Political Science, UK.

Routledge Studies in Heritage

Conserving Cultural Heritage Challenges and New Directions Edited by Ken Taylor, Archer St Clair, and Nora Mitchell The Making of Heritage Seduction and Disenchantment Edited by Camila del Mármol, Marc Morell, and Jasper Chalcraft Heritage and Memory of War Responses from Small Islands Edited by Gilly Carr and Keir Reeves Marie Antoinette at Petit Trianon Heritage Interpretation and Visitor Perceptions Denise Major-Barron Heritage after Conflict Northern Ireland Edited by Elizabeth Crooke and Tom Maguire Historicizing Heritage and Emotions The Affective Histories of Blood, Stone, and Land Edited by Alicia Marchant Underwater Cultural Heritage Key Concepts and Ethical Challenges Elena Perez-Alvaro Cultural Heritage, Ageing, Disability, and Identity Practice, and the Development of Inclusive Capital Simon Hayhoe For a full list of titles in this series, please visit www.routledge.com/ Routledge-Studies-in-Heritage/book-series/RSIHER

Cultural Heritage, Ageing, Disability, and Identity Practice, and the Development of Inclusive Capital Simon Hayhoe

First published 2019 by Routledge 2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN and by Routledge 52 Vanderbilt Avenue, New York, NY 10017 Routledge is an imprint of the Taylor & Francis Group, an informa business © 2019 Simon Hayhoe The right of Simon Hayhoe to be identified as author of this work has been asserted by him in accordance with sections 77 and 78 of the Copyright, Designs and Patents Act 1988. All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. Trademark notice: Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe. British Library Cataloguing-in-Publication Data A catalogue record for this book is available from the British Library Library of Congress Cataloging-in-Publication Data A catalog record for this book has been requested ISBN: 978-1-138-55537-2 (hbk) ISBN: 978-1-315-14946-2 (ebk) Typeset in Sabon by Apex CoVantage, LLC

In memory of Anthony Hayhoe, and to Margaret, Mark and Charles Hayhoe

Contents

About the authorix Acknowledgmentsx  1 Introduction

1

PART I

The study’s theoretical background15   2 The enlightenment and disability

17

  3 Two worlds of disability

32

  4 Inclusive capital and human value

49

PART II

Cases of ageing and disability in cultural heritage69   5 Younger children and cultural heritage

71

  6 Diego and Phoebe at California School for the Blind, San Francisco Bay

86

  7 Ruth in New York and Pierre in southern England

104

  8 Experiences of late disability – Tallulah and Don in western England

127

PART III

Cases of access and inclusion at cultural institutions149   9 Yosemite National Park, California

153

viii  Contents

10 The Statue of Liberty, New York, US

167

11 The Museum of Fine Arts, Boston, Massachusetts

179

12 The original two questions

193

Index199

About the author

Simon Hayhoe is a reader in education at the University of Bath and center research associate in the Centre for the Philosophy of Natural and Social Science, London School of Economics. Before moving to Bath he taught for almost two decades in secondary and higher education in the UK and the United Arab Emirates. Between 2001 and 2004, Simon was also a research officer at the University of London and a research associate at the University of Toronto. Simon’s PhD is from Birmingham University and his MEd is from Leicester University – he received university scholarships for both postgraduate degrees. Simon also won a number of post-doctoral academic awards, including a Fulbright All-Disciplines Scholar’s Award and fellowships of the British Computer Society, Royal Society of Arts, and the Metropolitan Museum of Art – Simon remains the first teacher to win an All-­Disciplines Scholar’s Award from the US-UK Fulbright Commission. Simon is currently working as part of a research team investigating and developing museum apps for people with disabilities in Spain, the United Kingdom, and Austria. This project is funded by a Horizon 2020 grant from the European Union. Simon’s work on blindness and disability is recognized internationally, and as a school teacher he delivered guest lectures and presentations at Harvard University, the London School of Economics, MIT, Berkeley, and the Free University in Brussels, amongst others. As a full-time researcher or academic Simon also delivered guest lectures and keynote addresses for Great Ormond Street Hospital, University of Toronto, Central St Martins School of Art and the Royal National Institute for the Blind. In addition, his writing was featured on BBC Radio 4, syndicated internet radio in the US, the Atlantic Magazine, The Conversation, Yahoo! and the Metro, amongst others. Simon’s first book also became part of a theatrical installation project at Battersea Arts Centre in London by Extant.

Acknowledgments

Acknowledgment must first and foremost go to Vanessa who helped with the manuscript, Rebecca McGinnis, John M Kennedy, Elisabeth Axel, Nina Levent, Stuart Wittenstein, Rom Harre, Roman Frigg, and the numerous participants in the research. Thanks must go to the Metropolitan Museum of Art for providing a fellowship to conduct the research for the school and Ruth’s case studies; the US-UK Fulbright Commission for providing a Fulbright All-Disciplines Scholar Award to fund the research for Chapters 5 and 6 and the research with Ruth for Chapter 7; Leicester University for providing a scholarship to fund the research with Pierre in Chapter 7. The development of theory in Chapters 3 and 4 received funding from the European Union’s Horizon 2020 research and innovation program under grant agreement No 693229 – Appendix A. Thanks must also go to the Centre for the Philosophy of Natural and Social Science at the London School of Economics, the Department of Education at the University of Bath and numerous staff at Leicester Grammar School for their support during this research and its original proposal; and all at Routledge/Taylor and Francis for supporting my proposal. Importantly, many thanks also go to our friends from New York: Rebeca Maginnis and Tim Barringer, Natasha and Christian, Maggie and Ray.

1 Introduction

Does the way we experience cultural heritage differ as we age or acquire an impairment?

Aims and context of the study In Cultural Heritage, Ageing, Disability, and Identity I investigate this core question, the transitions people experience through ageing, and the process of forming or refusing what I call a disabled identity.1 In doing so, I show how attitudes to cultural institutions such as museums and monuments can develop, and how people with disabilities can interact with cultural institutions in diverse ways. Cultural Heritage, Ageing, Disability, and Identity also examines how cultural life changes from being young and growing up with impairments, to being older and frailer and developing impairments. Although these changes are rarely seen as a disability in the traditional sense, this book shows how they are affected by the learning opportunities, information and spaces and places we interact with. Cultural Heritage, Ageing, Disability, and Identity also explores possible categories of identity, and introduces a model of inclusive capital that explores what I refer to as a sense of inclusion in cultural institutions – this model is also designed to reflect the experience of becoming disabled or being born with a disability, the process of ageing with a disability and the transitions to a disabled identity. Whilst describing this model of inclusive capital, I explore access to technology, information, historical objects, spaces and places by older and disabled people. In Ageing, Disability, Identity, and Cultural Heritage, I narrate cases of institutional strategy and policy development, and the cultural practice of older people and people with disabilities who visit these institutions – these cases are based in the states of California, Massachusetts, and New York in the US, and the south of England in the UK. The lives of the people I narrate in Cultural Heritage, Ageing, Disability, and Identity show different experiences of cultural heritage, developed through different educational and life chances. These cases are also a

2  Introduction mixture of gender and age and were designed to tell the story of different stages of ageing as a person with an impairment. Similarly, the institutional cases in Cultural Heritage, Ageing, Disability, and Identity represent different models of practice in the field of cultural heritage. These institutions also have to provide for different access needs, as per their environment, resourcing, size, and form. However, as I show in these pages, these cases shared the same basic principles of access to a sense of inclusion. The aims of Cultural Heritage, Ageing, Disability, and Identity Cultural Heritage, Ageing, Disability, and Identity has two aims. The first aim of the book is to address the role of the following two influences on the development of cultural identity: 1) the role of cultural heritage as a human desire; 2) the roles of bonding, learning, information, space and place on a sense of inclusion. The second aim of this book is to start a debate on how we understand access to cultural objects, cultural institutions, and cultural heritage through changing identities. These institutions can include, but are not restricted to, museums, national parks, and public buildings.2 Through this debate, Cultural Heritage, Ageing, Disability, and Identity also asks whether inclusion is important to their comprehension. The narrative on the museum and national parks in Cultural Heritage, Ageing, Disability, and Identity is designed to act as a guide for those who would like to develop or improve access to similar institutions. I develop this focus through an examination of learning, information, technology, networking, spaces and places of cultural institutions – this analysis includes digital environments, which I found were an increasing area of importance. As important, Cultural Heritage, Ageing, Disability, and Identity also shows how older people and people with disabilities’ inclusive practice is developed through engagement with cultural heritage. Understanding these identities not only helps us understand how disabled and elderly people learn through cultural heritage, it also shows us how identities are formed through relationships with others. In Cultural Heritage, Ageing, Disability, and Identity, I also make the case that understanding cultural identity is important in the development of accessible and inclusive environments. This understanding is important because cultural inclusion is formed in large part through access to and inclusion in the cultural spaces and places we all use and enjoy, and through learning, information, and bonding in these environments. Subsequently, Cultural Heritage, Ageing, Disability, and Identity aims to develop a new paradigm of inclusion and cultural heritage, by theorizing that cultural heritage develops and maintains identity. Moreover, the book examines an individualistic approach to inclusion and access to cultural heritage, arguing that disabled and elderly people cannot simply be regarded as having a single identity.

Introduction 3 The background of cultural communities in Ageing, Disability, Identity, and Cultural Heritage The study for Cultural Heritage, Ageing, Disability, and Identity represents a change of focus from my previous research and practice of cultural heritage and the arts. This previous research focused on access to visual culture by people with visual impairment, although like this research it examined visual impairment as a cultural rather than physical identity – I discuss this form of identity more in Chapter 3. This research suggested that cultural identity, education, physical proximity to cultural artifacts and the process of ageing determined how research participants engaged with cultural heritage.3 This problematizing of exclusion was also based on an examination of literature on disability, exclusion, and institutional access, showing exclusion tended to fall on an axis between two poles. In my previous books, Philosophy as Disability and Exclusion4 and Blind Visitor Experiences at Art Museums,5 these poles of exclusion were called the poles of active exclusion and passive exclusion.6 The theory of active exclusion comes from the political theory of disability as a direct consequence of what can be referred to as an ableist agenda.7 In the ableist agenda, people with disabilities are said to be made to fit in with an able-bodied society, one in which they are seen to be at an immediate disadvantage. What I called active exclusion was also based on a more general sociological theory of conscious exclusion, which has been prominent in sociological writing for several decades. In this interpretation of exclusion, the deliberate oppression of disabled people is said by authors to be likened to oppression based on race or gender. Writing in this genre can also refer to disability leading to oppression and an object of difference by people who do not have a disability or who think of themselves as a higher social class.8 An example of what I refer to as active exclusion is described by the disability theorist Pfeiffer.9 Pfeiffer found instances of legalized and violent acts of discrimination, such as enforced sterilization of people with disabilities in numerous US states, Canada, and several Northern European countries. Pfeiffer also found that there was openly expressed prejudice by politicians and institutional administrators against people with disabilities. These laws came despite Western countries’ rhetoric about the horrors of people with disabilities slaughtered and used in medical torture under Nazi rule during World War II. A growing number of academics see that there is also active exclusion in cultural institutions. These writers feel that, as supposedly elite institutions, museums can be guilty of excluding people who do not fit their intellectual stereotype. As an alternative culture, the disability arts movement, as a separation from mainstream arts by disabled people, can redress this inequality in museums and galleries.10

4  Introduction However, the disability theorist Darke feels disabled art is often hijacked by non-disabled people in access and education departments in mainstream museums. Darke feels inclusion can suppress disability culture, and often removes political and intellectual content from new artworks. This results in a more sterile form of art that is less political, without reflecting the experience of being disabled. Writing towards the passive exclusion pole finds that attitudes towards individual disabilities such as blindness, deafness, or learning difficulties, have largely evolved for arbitrary social and cultural reasons. These reasons often include ignorance and financial hardship. In my early search of historical literature, I observed these struggles were rarely about a hatred of people’s impairments but were often the result of parallel cultural, social, and political tensions – this can include financial cuts to services because of financial hardship or tax cuts, or our need to simplify arguments or categorize people.11 Consequently, the intellectual identity of disability and ageing varies according to physical, cultural, and historical environments, and affects services and the lives of disabled and older people. Passive exclusion can lead to over-simplified classifications that lead to mythologies about disabled people. For instance, scientifically we classify people with a range of types and strengths of impairment under the single category, “the blind” – this is opposed to the individual needs of people who have visual impairments based on their individual circumstances, as the educationalist Warren has previously suggested. As I argue in the books Arts Culture and Blindness12 and Blind Visitor Experiences at Art Museums, this miss-categorizing of blindness often led to exclusion in the arts and cultural heritage. Similarly, in my other recent book Philosophy as Disability & Exclusion I also argue that naïve scientific beliefs about visual impairment change over time, and yet our mythologized beliefs about people who are visually impaired does not. In these earlier books, I also wrote about the nature of our mythologies of disability leading to the exclusion of students who acquire disabilities early on. These mythologized beliefs often lead people with early disabilities to believe they are incapable of participating in cultural heritage or other forms of education in later life. Therefore, it’s very important as students, academics, and professional that we believe in the potential ability of people with disabilities when they are younger, and particularly in their mainstream schools. It further shows that the development of inclusive cultural practice is vital if children with disabilities are to feel included. This led to the two questions that now inform my analysis in Cultural Heritage, Ageing, Disability, and Identity: 1 How do people with disabilities develop cultural practices? 2 How do cultural institutions engage with people with disabilities?

Introduction 5

The rationale, methodology, and findings of the study Rationale for constructing the study Cultural Heritage, Ageing, Disability, and Identity was planned to address these two questions as a cultural anthropology of various miss-apprehensions and myths about people with physical and learning impairments. The research included observations and interviews with older people, people with impairments, visits to sites, document searches, and interviews in cultural institutions. The study saw its participants as a part of two cultural communities. These two communities were “cultural heritage visitors,” and “cultural institutions providing access” – I write about these features in more detail in the following three chapters. In my research, I also saw these two communities as being part of broader cultures, such as language groups (speaking English as a first language) and interlacing cultural heritage groups (such as American, Californian American, Latino American, African American, British English, British Welsh, and Jewish American) and sampled the cases of these communities accordingly. On studying cultural institutions, I also examined the spaces and places of their environments and the objects they preserved and exhibited, which I argue formed part of their greater identity as institutions. This said, although Cultural Heritage, Ageing, Disability, and Identity represents a cultural anthropology of disability and cultural institutions, the study did not assume people who have an impairment think of themselves as disabled. This assumption, as I argue in the cases later in the book, is a mistake that the social or medical models of disability have made.13 Furthermore, I also argue people with disabilities face a unique form of exclusion, and this exclusion should not be examined as social models of ethnicity or gender are. In this way, Cultural Heritage, Ageing, Disability, and Identity builds on my previous criticisms of social and medical models of disability and builds on an epistemological model of disability. This epistemological model of disability sees people’s experience of disability, and their identity as a person with a disability, as being shaped by the academic ideas that have formed their identities.14 The grounded methodology and ethical practice involved in the study The methodology used to develop this study was grounded methodology,15 which is an adapted form of grounded theory.16 As with grounded theory, grounded methodology has three phases of analyzing data: the open, axial, and selective phases. Also, like grounded theory, during grounded

6  Introduction methodology studies data is analyzed in a progressively focused way during its three phases. Grounded methodology is specifically designed without inducing testable theories, as the traditional form of grounded theory proposed.17 Instead, grounded methodology encourages the evolution of culturally deduced theories in the style of Geertz, and these theories evolve through interpretive, cultural narratives in unique cultural settings. As with grounded theory, in planning this study I refined its data analysis and regarded all forms of data as equally important, valuable, and usable. In this research, I also planned to use data and theoretical approaches that had been stored from earlier research studies, where I found they could be applicable in a different context. My design of this grounded methodology study also relied less on computerized formal coding, and more on cultural narratives developed by the researcher to critically appraise an original problem. This study was designed in accordance with the British Educational Research Association’s ethical guidelines.18 Of these guidelines, I specifically focused on three parts that had particular significance in this study: anonymity of participants, informed consent, and safeguarding of participants. In my study, anonymity went beyond simply changing the names of the participants with disabilities, and included blurring names of streets, town districts and small villages that could identify them. Descriptions of participants with disabilities also left out personal records and details about relatives, workmates, workplaces, and friends. The blurring of details was difficult in the case of those who provided information for the study of institutions, as I had to name the cultural institutions to make their information meaningful. Consequently, in these cases I decided to highlight information about the institutions and the professional role of the personnel. My voice recording of the cases in Chapters 5 to 8 were also designed to preserve anonymity. All but one of the cases in Chapters 5 to 7 were recorded on my pocket sound recorder, which recorded MP3 files which I could download to my computer. The cases in Chapter 7 were recorded on my iPad. Although I electronically copied these sound files to a single laptop, they were locked behind passwords and a firewall, and they were also under physical lock and key in my house and office. Importantly, I gave informed consent both verbally and in writing, based on the practicality of the situation, as some participants had little means of reading research texts before I approached them – although in some circumstances this approach was made easier as some participants asked for questions beforehand. Safeguarding vulnerable participants was difficult, as I first had to define vulnerability in the context of disability. I felt school children and adults with learning disabilities may have been particularly vulnerable to misunderstand what I asked them about their backgrounds or the purpose of the research or may misconstrue the research design.

Introduction 7 Consequently, to provide safeguarding for children, I didn’t talk to children separately, I only observed or talked to whole classes. I also made sure I had informed consent from school administrators, individual teachers and children during the fieldwork. Similarly, parents were informed of the study, leaving the possibility of withdrawing their children if they felt this was appropriate. Eventually, I also made sure that I didn’t involve young children or participants with profound learning disabilities, as I felt they may not be able to give informed consent. Unlike the conversations I carried out with adult participants, I made sure I was always in a group with children. I also made sure that another “responsible adult” was always with me and the group as they were vulnerable to harmful adult relationships, and it was important to make sure the children felt comfortable around me. As I reflected later, it turned out that this added presence of familiar adults had the added advantage of making me more relaxed around the children when I came to work in schools. Even as a teacher who was used to groups of children, I felt it was important to feel that there were potential burdens my actions could have on vulnerable children. Subsequently, the other adults in class during my visits regulated any questions and censored any moments when the observation became too personal. Initial considerations in the data collection As my native tongue is English and I have little confidence in my use in other languages, I decided to limit the study to English speaking communities. Subsequently, I searched for cases from the US and UK alone – what some may call a significant portion of the “Anglo-sphere.” Perhaps because of our shared heritage and language, I previously found significant similarities in practices and information sharing between American and British cultural institutions. As I show in the following chapter, there are also links in the development of institutions for people with disabilities that give the US and UK a shared special educational heritage.19 This meant I was able to develop cases of comparable disabled and older people in the cases in Chapters 5 to 8. There were also further practical reasons for focusing on cultural heritage in the US and UK, as these were countries that I knew well and have strong connections with. Importantly, through previous work I developed relationships with special schools, artists working with older people, people with disabilities, and museums throughout the US and UK. This gave my eventual analysis more focus, but also gave the study an international flavor, as there are significant differences between the US and UK. In this first phase, I didn’t develop a self-contained study as I did in previous research. Instead, I started by re-examining case studies I created from previous research but that did not fit previous analyses. In this first phase, I also looked at interviews with disabled teachers and other participants

8  Introduction who had different forms of disability, and resurrected and looked at their cases anew. In this first phase, I also re-read case studies through the lens of experience, regardless of type or strength of impairment. Importantly, although I focused on visual impairment in previous research, I also reviewed previous observations of classes where participants had mixed disabilities. One early observation I made after re-reading these cases was that many of the participants had multiple disabilities. Although I often analyzed the nature of their impairments in this previous research, the cultural nature of disability became the sole focus of interest in my new investigation – even students in schools for the blind increasingly had multiple disabilities, with their visual impairment sometimes becoming unrepresentative of their most significant disability. Examples of these cases from earlier studies were Pierre, who I interviewed for my earliest research from 1994 to 1995, and whose data I did not analyze in this early study. Other cases came from studies of special education and classes for a US museum study I conducted in 2011, but whose status did not fit my then focus on the nature of their impairment, and fresh studies of older people and cultural heritage sites in 2017. From these cases I made four observations that could be taken forward to the second phase of the study. The first observation was, adults who had more years of education and who were supported by families and friends, were more likely to visit cultural institutions. Most importantly, when people had family experiences of culture they tended to want more experiences later and saw value in their practice. Similarly, the more education beyond the age of sixteen participants had, the more they saw their education and cultural heritage as being part of their identity. The second observation was, whether cultural institutions had accessible policies, strategies or not, participants with education beyond the age of sixteen often found ways of accessing the institutions. However, although experienced participants visited less-accessible institutions they were less likely to feel connected to these institutions or revisit them. Consequently, even for these more determined participants, being given an accessible sense of inclusion by an institution provided a sense of belonging, loyalty, and even well-being. The third observation was that, whether disabled at a young age or not, the participants who engaged with cultural institutions when young were more likely to continue this interest when older. Often, and paradoxically, this interest increased when participants became more physically and mentally tired. Notably, cultural engagement was not necessarily physical engagement; for younger participants especially, the web was an increasingly important part of their engagement with cultural heritage. Fourthly, participants’ disabilities did not physically affect the type of cultural heritage they engaged in – people with hearing impairments and

Introduction 9 educated in music were as likely to listen to music as people without hearing impairments were; people with visual impairments and educated in fine art were as likely to be interested in visual arts as sighted people were; people with learning disabilities who had access to cultural heritage were as keen on learning about cultural heritage as people without learning disabilities were. Importantly, therefore, it was not the physical fact of a disability that led to self-exclusion, but the attitude of the person with the impairment given a particular upbringing and education. Developing a hypothesis and model of analysis In the second phase of study, I categorized the experiences of cultural heritage in these previous human cases. I then surveyed a range of policies of institutions, including museums, national parks, monuments, and religious buildings, to develop categories of inclusive policies and strategies. The examination of human cases led me to understand that certain categories of inclusion were important to motivate and develop an overall sense of inclusion: firstly, access to the environment of cultural heritage; secondly, being part of the “story” of the cultural heritage; thirdly, having proximity to and a sense of ownership of cultural heritage; fourthly, a feeling of belonging to a network of other people, whether family, friends or other students, that cultural engagement gives. In these cases, I also noticed a sense of inclusion also led to sustainable inclusion and an increase of inclusive practice. This sustainability came about when participants developed this sense of ownership and the practice of developing their own knowledge, habits, and skills as cultural heritage practice; this knowledge and these habits and skills led to the participants’ sense of independence; this independence also meant that participants could strike out on their own and develop their own knowledge, habits, and practice. Now I had observed what my participants needed to feel this sense of inclusion, I looked for the means that led them to develop this sense of inclusion. After looking at my cases in greater depth, the following means recurred over and over in the following order: firstly, participants needed to be part of a network like a family, a group of friends or a class; secondly, being part of a network led to the learning of skills, habits, and knowledge; thirdly, this learning enabled access to information and technologies; fourthly, this enabled physical access to environments of cultural heritage, such as monuments, nature reserves or museums; fifthly, all these practices required some form of mobility, from meeting in institutions to navigating hyperspace. This process subsequently became my tentative hypothesis, and later a model of cultural institutions that provides a sense of inclusion. To develop this hypothesis, I surveyed literature on human values, and saw reference points in Adam Smith, Karl Marx, Pierre Bourdieu, and Sarita Yardi’s descriptions of capital and inclusion – these theorists hypothesized

10  Introduction through learnt knowledge, beliefs, skills, emotions, ethics, and habits that can be said to develop a productive form of practice. More particularly, like Bourdieu and Yardi’s intangible capitals, I hypothesized that my participants learnt a form of inclusive knowledge, beliefs, skills, emotions, ethics, and habits that led to inclusive practice. Consequently, I called what was learnt and practiced inclusive capital. Consequently, inclusive knowledge, beliefs, skills, emotions, ethics, habits, and practices were developed and supported by institutions that understood this need for independence and a sense of inclusion. This led me to gather more cases of people with disabilities and cultural heritage, and a survey of cultural institutions to test my tentative hypothesis. In the third phase of research, I interviewed older participants who developed disabilities in later life from southern England. My previous studies showed these participants were more likely to develop knowledge, habits, and practices early in life that could be understood as inclusive capital. In this third stage, I also conducted a survey of institutions in the areas where I gathered my human cases, based on how accessible previous research participants felt these institutions were – these institutions ranged from those that participants felt they could not visit, to those they felt comfortable visiting. These institutions were then measured against the networking opportunities, learning, physical access, information, and technology they provided. Institutions with more positive inclusive practice were then studied in greater depth. Unfortunately, in common with many of the cultural institutions and laws that I previously studied, less-accessible institutions didn’t always take any categories of access into account. In other inaccessible institutions, I found access emphasized one category at the expense of another, or simply got it wrong. Often, and in common with early access laws and guidelines, these institutions emphasized physical access without understanding the previous stages leading to a sense of inclusion. For instance, in the US and UK some institutions famously installed wheelchair ramps as a very visible symbol that they were trying to be inclusive, without encouraging networks or learning, or providing information or technology. I have previously referred to these ramps as an example of symbolic inclusion, as it is more important to be seen to be inclusive rather than doing something inclusive.20 Equally, in the third stage I found that the participants saw cultural heritage as an important part of life. In addition, the participants would go out of their way to find new cultural experiences, often more than they did before developing a disability. This was largely because they wanted to see themselves as able to achieve inclusion, and wanted to remain part of their existing networks or create new networks of like-minded people. Importantly, the participants felt their sense of inclusion was important for their emotional well-being. Similarly, cultural institutions where participants felt comfortable were more likely to support and create networks, provide learning opportunities,

Introduction 11 information, technology, and accessible environments. This analysis was reinforced with interviews with personnel from some of these institutions, who could provide figures and examples of visits by people with disabilities. However, I also found that cultural institutions felt tensions, such as funding, curatorial practice and the inability to change historical environments, all of which hampered inclusion. This research was then sorted and laid out as the sections and chapters of this book.

The outline of the book This book is laid out over three sections, following on from this introduction. The first section is the study’s theoretical background and includes three chapters that outline the philosophy and mode of analysis underpinning the study. Chapter 2 discusses the nature and origins of institutions for people with disabilities, and the terminology and definitions included in the cases. Chapter 3 investigates the difference between people with early impairments, people who gain later impairments and how their identities reflect these different cultural experiences and identities. Chapter 4 introduces the results of a survey of literature on human value, and introduces the model of inclusive capital, which guides the analysis of cases in this book. The second section is Cases of ageing and disability in cultural heritage, and has four chapters, each of which outlines the cases of people with disabilities and their cultural practices. Chapter 5 examines the cultural heritage experiences and practices of a group of three young students in their early teens, two of which are boarders, in a special school in Massachusetts. Chapter 6 examines the cultural heritage experiences and practices of two nineteen-year-old students in their final year at California School for the Blind, both of which boarded at the school and were preparing to leave. Chapter 7 examines the cultural experiences and practices of two people past the age of retirement who had been impaired early in life, one case being from New Jersey and the other from southern England. Chapter 8 examines the cultural experiences and practices of an older woman and man from southern England who developed their impairments after the age of retirement. The third section is Cases of access and inclusion at cultural institutions and has three chapters. Each of these chapters outlines the cases of three different types of cultural heritage sites in the US, and their policies and strategies of inclusion and access. Chapter 9 examines access and inclusion strategies at Yosemite National Park, which is located on the eastern border of California, and also the national policies of the National Park Service. Chapter 10 examines access and inclusion strategies at the Statue of Liberty, which is also based in a national park, and is located in New York City harbor. Chapter 11 examines access and inclusion strategies at the Museum of

12  Introduction Fine Arts, Boston, a large and independent regional museum, with a number of important collections, which is located in a suburb of the city. Chapter 12 concludes the study by examining the two questions that represent the focus of this study, and I make three recommendations for further theory development, research, and practice.

Notes 1 A disabled identity is defined as a person’s belief they are incapable of or need to undertake alternative cultural tasks because they have a physical impairment or an impairment to learning; conversely, impairment is defined as a physical or psychological trait that makes everyday cultural tasks harder, such as issues with reading or listening, movement or interacting with others. 2 These buildings include places such as cathedrals, churches, mosques, synagogues, temples, palaces, castles, preserved ancient monuments. 3 See, for example, Hayhoe (2000, 2008, 2013, 2017). 4 Hayhoe (2015). 5 Hayhoe (2017). 6 This discussion is based on the description in these previous two books. 7 See, for example, Hehir (2002). 8 Hayhoe (2015). 9 Pfeiffer (1994). 10 See, for example, Sandell and Dodds (2010). 11 Popper (1999). 12 Hayhoe (2008). 13 Hayhoe (2012, 2016). 14 Hayhoe (2015, 2016). 15 Hayhoe (2012). 16 Glaser and Strauss (1967); Strauss and Corbin (1998). 17 Glaser (1998, 2001). 18 BERA (2004). 19 Hayhoe (2015). 20 See, for example, Hayhoe (2008).

References BERA (2004). Revised ethical guide- lines for ethical research. Southwell, Nottinghamshire: British Educational Research Association. Glaser, B. G. (1998). Doing grounded theory: Issues and discussions. Mill Valley, CA: The Sociology Press. Glaser, B. G. (2001). The grounded theory perspective: Conceptualization contrasted with description. Mill Valley, CA: Sociology Press. Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. Chicago, IL: Aldine Publishing Company. Hayhoe, S. (2000). The effects of late arts education on adults with early visual disabilities. Educational Research & Evaluation, 6(3), 229–249. Hayhoe, S. (2008). Arts, culture and blindness: Studies of blind students in the visual arts. Youngstown, NY: Cambria Press. Hayhoe, S. (2012). Grounded theory and disability studies: Researching legacies of blindness. Amherst, NY: Cambria Press.

Introduction 13 Hayhoe, S. (2013). Expanding our vision of museum education & perception: An analysis of three case studies of independent, blind, arts learners. Harvard Educational Review, 83(1), 67–86. Hayhoe, S. (2015). Philosophy as disability & exclusion: The development of theories on blindness, touch and the arts in England, 1688–2010. Charlotte, NC: Information Age Publishing. Hayhoe, S. (2016). The epistemological model of disability, and its role in understanding passive exclusion in eighteenth & nineteenth century protestant educational asylums. International Journal of Christianity and Education, 20(1), 49–66. Hayhoe, S. (2017). Blind visitor experiences at art museums. New York: Rowman & Littlefield. Hehir, T. (2002). Eliminating ableism in education. Harvard Educational Review, 72(1), 1–32. Pfeiffer, D. (1994). Eugenics and disability discrimination. Disability & Society, 9(4), 481–499. Popper, K. (1999). The open society and its enemies: Volume 1, Plato. Abingdon, Oxfordshire: Routledge. Sandell, R., & Dodds, J. (2010). Re-presenting disability: Activism and agency in the museum. London: Routledge. Strauss, A., & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory (2nd ed.). Thousand Oaks, CA: Sage.

Part I

The study’s theoretical background

2 The enlightenment and disability

Introduction In an ideal world, I wouldn’t describe a study on inclusion by writing about exclusion. However, as anyone studying disability and culture soon discovers, it’s impossible to write about why inclusion is necessary without also describing how exclusion is a pervasive part of being disabled. It could be said the way that people with disabilities are seen by our wider community is similar to what Paulo Freire described as the dehumanized person, as a personal identity robbed of humanity. Dehumanization, which marks not only those whose humanity has been stolen, but also (though in a different way) those who have stolen it, is a distortion of the vocation of becoming more fully human.1 Consequently, to begin this study of inclusion and cultural heritage, I need to clarify what we mean by disability, and the relationship of exclusion to institutions and their philosophies. I start this chapter by examining the early years of an institutional disability culture, how our ideas about disability were invented and why we need to develop a new philosophy of disability. I also examine the roots of institutional exclusion of people with disabilities. These roots are based in the institutions and philosophies of the Enlightenment in Western Europe and North America. This description of the enlightenment sets my position for the next two chapters, where I describe how these enlightened attitudes still effect our modern state of mind and institutionalization. A description of disability and the Enlightenment is also important for introducing the reader to an important idea that will reoccur throughout this book. In previous work on disability, I described this as an epistemological model of understanding disability, as to understand disability you should be familiar with ideas about disability. The idea behind this epistemological model is disability is not a natural invention or even largely a biological occurrence, but a cultural, philosophical, and institutional invention. As I argue later in this book, it is also not

18  The study’s theoretical background wholly a social creation, as many critical disability theorists still argue to this day.2 Disability is, instead, a cultural phenomenon, and it is created by a knowledge culture. Consequently, in the rest of this chapter I explain how our modern ideas and knowledge about disability began. What’s more, I also describe how the creation of disability as we know it today wasn’t wholly guided by a clear logic of natural, medical or social science. Instead, this invention highlights the problems and inaccuracies of the logic of science, and its influences from religion and politics.

The roots of institutions and disability Despite its roots in the latter years of the Renaissance, the Enlightenment was the name given to a period of philosophy that ran from the seventeenth to the nineteenth century. Importantly, the Enlightenment was the period of philosophy when our current scientific methods and our understanding of the connection between the body and mind began.3 Consequently, understanding the Enlightenment is vital to the study of disability and ageing, as it had a substantial impact on the way we now think about impairments and human ability. What’s more, the Enlightenment was the period when modern institutions, such as museums, special schools, publicly commissioned artworks, and national parks were invented. Which is why, as I argue throughout this book, like disability, the invention of these institutions also lacks a clear logic, and often follows a path of self-interest. As this book is not a book on philosophy per se but an introduction to ideas about disability – for readers who want to know more about this topic in relation to blindness in particular, please see my previous book, Philosophy as Disability and Exclusion – this narrative begins after a hundred years of Enlightenment, when the need for institutions for disabled people was first mooted. The moral foundation of enlightened institutions In his influential essay, Lettre sur les aveugles à l’usage de ceux qui voient (Letter on the Blind for the Use of Those Who See), published in 1749, Denis Diderot4 founded a liberal philosophy on the moral condition of deafness and blindness. This philosophy promoted the equality of people with sensory impairment, and doubted our senses control intellectual and moral development, a radical thought in this period. The moral equality of people with disabilities had previously been greatly doubted in the early years of the Enlightenment, and people with learning disabilities, mental health issues, blind and deaf people were especially thought of as morally uneducable.5 These negative attitudes towards people with disabilities were made worse because people with disabilities were

The enlightenment and disability 19 often seen in public as an underclass of beggar.6 As Denis Diderot wrote in his essay, Our virtues depend so much on the sensations we receive, and the degree by which we are affected by external things . . . [Yet,] Madam how different is the morality of the blind man from ours? And how different would that of a deaf man from his? And how to one with an extra sense, how deficient would our morality appear – to say nothing more? Our metaphysics and theirs agree no better.7 Denis Diderot’s Letter on the Blind not only inspired writing on the nature of morality throughout society, later in the eighteenth century, it also influenced the first published proposals of separate educational systems for people with sensory impairments. This was the first form of special education as we think of it today. For example, the first free-school for the deaf was founded slightly more than a decade after Letter on the Blind by the Catholic preacher, Abbe Charles Michel de l’Epee, in the 1760s – as records at the time are sketchy, and there was no specific foundation, it’s difficult to pinpoint this school’s exact beginning to a single year. Charles Michel de l’Epee’s new school was followed in 1776 by the first book of instruction on students who were deaf using sign language by de l’Epee.8 This trend of creating a system of teaching, publishing its method, and founding a school – or vice versa – was repeated throughout the Enlightenment, as the following history of these institutions shows. The first essay proposing public education for the blind was published in one of the most influential liberal journals of the Enlightenment, the Edinburgh Magazine and Review. This essay, published in 1774 and entitled, On the Education of the Blind, was radical, as it was written by the blind poet, Calvinist cleric and philosopher, Thomas Blacklock.9 To reinforce these radical credentials, Thomas Blacklock wrote under the pseudonym, Demodocus, a reference to the fictional blind bard and poet in Homer’s Odyssey.10 Thomas Blacklock’s model of educating blind students was based largely on the liberal philosophy of Denis Diderot and David Hume – although David Hume had only partially appreciated the abilities of blind people.11 The essay also cited cases of the genius of people who were blind, as examples of the possibility of learning with what were regarded as moral and intellectual disabilities. Thomas Blacklock’s most famous case in the essay was the mathematician, Professor Nicholas Sanderson, who lost his sight in infancy. Nicholas Sanderson succeeded Isaac Newtown as Lucasian Professor of Math at Cambridge University, after teaching himself math as a child, and using his own pin-prick language to do so. Nicholas Sanderson was also admired outside Britain and Ireland in the eighteenth century. Consequently, he was cited by another liberal admirer

20  The study’s theoretical background of Denis Diderot’s work, the French translator and sometime philosopher, Valentin Hauy.12 In Paris in 1785, Valentin Hauy founded what is now regarded as the first separate institution of educational enlightenment for blind children. Protestant ideology, and the foundation of Protestant moral education and treatment Arguably, the first private tuition for students who were deaf was developed in Edinburgh by Thomas Braidwood, also a math teacher, who had a private school for math tuition. In 1760, Thomas Braidwood was asked to privately tutor a young boy with a serious hearing impairment, who was unable to gain admission to mainstream schools in the area. Thomas Braidwood tutored his first student individually for several years, developing his own method of tuition, which favored visual arts, literature, and sign language – the first boy Braidwood taught subsequently became a well-known painter of miniatures. Later, Braidwood specialized less in teaching math, and took in other students with hearing impairments, renaming his private fee-paying school, Braidwood Academy for the Deaf and Dumb. The first asylum for the blind was an institution for working and underclass children and young adults, and was founded in Liverpool in 1791, and the second asylum was in Edinburgh in 1793. Inspired by the writing of Thomas Blacklock and the work of Valentin Hauy, the Liverpool asylum was founded by a consortium led by a blind philanthropist named Edward Rushton. Like Thomas Blacklock, Edward Rushton was a Calvinist whose liberal views advocated the abolition of slavery, as well as support for the French Revolution. The Edinburgh asylum was founded by Thomas Blacklock himself.13 Similarly, in 1796, William Tuke, a liberal Quaker, founded what he called York Retreat for the Care of the Insane – what we now call people with mental health problems – as a form of asylum to help his fellow Quakers. William Tuke’s support for his inmates was provided through a system of what he called Christian moral treatment14: not an education, but a rehabilitation of moral consciousness. Despite their rhetoric the purpose of all the asylum projects was the training of people with disabilities, a type of training that was peculiar to the majority of Protestant countries. Moreover, asylums also had similar attitudes to exclusion, and were largely based on a belief in the moral condition of impairments. This ideology was reinforced through the founding of these institutions by overtly Protestant charities. For example, the Quaker foundation of the Bristol Asylum for the Blind, also founded in 1793, believed that people with visual impairments from working and underclass families had become immoral. This immorality was based on a belief that a lack of sight, hearing or the ability to learn meant a lack of access to “God’s works,” or the Bible.15

The enlightenment and disability 21 According to the founders of the Bristol Asylum, its inmates could only achieve religious salvation through reciting passages from the Bible as they performed hard manual labor. Recital and labor subsequently formed a vocational path to moral enlightenment, as it provided salvation from indolence, which they defined as a form of immoral work such as begging. Similar statements were written by the founders of asylums for working and underclass students who were deaf, at the end of the eighteenth century. For instance, the founders of London’s Asylum for the Support and Education of Indigent Deaf and Dumb Children of the Poor described its education as a type of moral management.16 This moral management was designed to teach its inmates to speak normally, or at least communicate in a way that was comprehensible to a morally superior class of hearing people. Thus they were, according to their various capacities, conversable and intelligence, able to receive and express ideas; to furnish them with moral and religious information; and to lay open to them, in a considerable degree, the sources of intellectual enjoyment, common to rational and cultivated minds; by teaching them to understand the power and use of language; not a language of signs peculiar to themselves; but the common language of the country to which they belong, and which is spoken and written by those around them.17 Like the Braidwood Academy a century before, in the nineteenth century the moral exclusion of disabled people was mostly limited to working and underclass people. The system of ethics and the understanding of disability was very different for middle-class children with disabilities, and this was reflected in their education. For instance, an elite private special school for middle-class children, Worcester College for the Blind Sons of Gentlemen, taught music and academic subjects to prepare students for university. Worcester College was founded by an Anglican cleric, the Reverend Robert Blair, as a high-feepaying boarding school for students whose families wanted them to gain university entry. Robert Blair was already a math master at an old and exclusive private school, the King’s School, and developed Worcester College after teaching the visually impaired son of a fellow Anglican cleric. The cleric trusted Robert Blair, as he was impressed with Blair’s academic abilities and skills as a student at Trinity College, Dublin. Worcester College was the first institution for the blind to overlook charitable, non-conformist Protestant philosophies. Instead, Worcester College focused on education as the maintenance of conservative political values, and the education of the children of wealthy people who needed to maintain their social position. Worcester College consequently stood in opposition to its non-conformist peers, who were more concerned with educating children from working and underclass families.

22  The study’s theoretical background Descriptions of the King’s School also show that it had previously included students who were disabled into its mainstream school.18 This wasn’t unheard of in private schools throughout history, and it was felt that to be middle-class and disabled was to be less disabled. These middle-class students were the sons of wealthy, fee-paying parents who had no regard for asylums, as they were designed for working and underclass families. As a matter of fact, students without visual impairments were educated at Worcester College and it subsequently became a selective school such was the success of its curriculum. However, it is noticeable that even these middle-class students with disabilities were excluded from a cultural heritage they thought they were incapable of: Worcester College only taught music and literature, and Braidwood only taught literature, math, and visual arts to its middle-class students. Subsequently, even middle-class students with disabilities were judged to be as incapable of moral aesthetics as their poorer counterparts. It wasn’t until more than sixty years later that a further cultural shift created a new form of education, and museums and then schools made cultural heritage more accessible.19 And yet, despite this exclusion at Worcester College, Robert Blair’s connection with Worcester cathedral allowed the Kings School to supply students to the cathedral choir, as it still does today. Later, the cathedral’s organist and renowned composer, Edward Elgar, was an occasional music teacher at Worcester College,20 and reflected social elitism in Victorian society. To summarize, the common aim shared by these institutions for people with disabilities, whether they were for medical or educational treatment, was to improve the moral landscape of their inmates. In doing so, these institutions also reinforced social class division, by splitting disabled populations into those who were sent to asylums, and those who attended schools and retreats. However, all these institutions felt that increasing moral worth through occupational therapy, knowledge, and honest dignity would improve their inmates’ life chances through labor. The exclusion of disabled people from the earliest cultural institutions for people with disabilities developed as part of a progressive, supposedly liberal agenda. This agenda was based at least in part on the potential moral equivalence of people with certain forms of impairment.

Protestant fundamentalism and scientific morality in the US Samuel Howe, phrenology and US asylums In Massachusetts, the first institutions for people who were disabled were founded in the 1830s on Protestant liberal and moral principles. The policies of these institutions were based on the understanding that moral and deviant behavior had roots in the body, and could best be interpreted through

The enlightenment and disability 23 the Austrian science of phrenology. Phrenology was originally a liberal science developed in the late eighteenth century, and founded on the belief that the shape of a person’s brain was related to behaviors and personality.21 In the US, phrenology was used to inform a rationalization of moral, vocational, and scholastic philosophies of ability, largely by non-conformist Protestant philanthropists.22 The most important of these phrenological studies in this period was established by the liberal, anti-slavery campaigner and Greek independence fighter, Samuel Gridley Howe. According to Samuel Gridley Howe, three impairments, blindness, deafness, and learning difficulties, were to be important as a focus for the earliest asylums. These asylums he helped found in the Boston area.23 Of these categories of impairment, Samuel Gridley Howe also believed there was a hierarchy of “natural” ability, with blind people being thought of as the most intellectually able.24 However, in common with his earlier Protestant counterparts, Samuel Howe supposed that blindness, deafness or learning disabilities “naturally” reduced the moral ability of disabled people equally.25 Samuel Howe’s phrenological theories led to two important ideas about disability and deviance, which would color the education of disabled people in the twentieth century. Samuel Howe’s first idea was that immorality and deviance could be diagnosed in the behavior of people with disabilities, as medical doctors diagnose illness through symptoms. This behavior could also be passed on through the generations, and deviant behavior could be seen in the children of their disabled parents. Interestingly, the immorality and deviance that Samuel Howe described as “natural” were often related to Protestant ethics in Massachusetts. This system of ethics was historically informed by the Protestant fundamentalism of the Puritans who landed in the state on the Mayflower.26 For instance, in the 1830s the Temperance Society of Massachusetts published a pamphlet, based on Howe’s writing, stating their belief that the behavior of drunks could be inherited by several generations of children. This view was based on the observation by many of its members that children with what we can assume from their description to be learning and neurological impairments – called idiots in those days – moved as if they were drunk. The movement of these children, the Temperance Society’s pamphlet stated, was a trait that can only be assumed to be passed on from parents who drank alcohol – of course, although statistics did not exist at the time, it could be the case that most parents in Massachusetts in the 1830s drank alcohol, most of whom did not have children with disabilities. Intemperance – Dr Howe, of Boston, commissioned to prepare a system of education of idiots estimates their number in Massachusetts are over 1200, and that three fourths of them are born to intemperate parents.

24  The study’s theoretical background Many under his care, children of such people, have the air, gait and appearance of drunken men. (Temperance Society Notices, 1836, sourced from the Research Library, Perkins School for the Blind, Watertown, MA, US) In the centuries prior to Massachusetts’ first asylums, Protestant philanthropists believed children’s disability caused by parents’ lack of hygiene and promiscuity, made children more vulnerable to their parents’ “immoral” behavior.27 Samuel Howe also believed that deviant, immoral behavior could be inherited through future generations and, pre-dating the earliest genetic theories of Mendel in Switzerland, not just parents could pass on deviance and immorality. For example, in his essay, Discourse on the Social Relations of Man, presented to the Boston Phrenological Society in 1837, Samuel Howe suggested that disability increased immorality in the families who had them.28 This theory was based on a belief that disabled men and women had strayed from the path of God in being disabled, and that their immorality could become inherited. That God has given to the human race, collectively, the capacity of perceiving, and the power of executing those conditions on which the development and improvement of the immortal spirit is dependent; that observances or neglect of these conditions is visited upon the race to the third and fourth generation . . . That when the original formation of these organs is according to the general laws of nature, the individual is a free moral agent, and responsible for his actions according to the degree of his intelligence; that when the original organization is un-natural, or when it becomes diseased, or when the organs sleep, the individual is not a moral free agent.29 Samuel Howe’s second idea was the scientific link between immorality across whole communities, and to families with disabilities in these communities. This idea reinforced the philosophical prejudice that immorality and poor behavior could be inherited. Samuel Howe’s second idea meant that immorality was infectious, and a whole society could catch and pass on immorality from disabled people; this is to say, Samuel Howe thought disability was an immoral epidemic. Consequently, for Samuel Howe, immorality and deviance were also a sociological issue. This idea also meant that disability needed a whole community response to effectively cure this epidemic of poor behavior through religious work. For example, in his 1837 lecture to the Boston Phrenological Society, Samuel Howe went as far as proposing that the immorality and deviance of a community could be measured by the number of disabled people who

The enlightenment and disability 25 lived in it. To conclude this new idea, Howe also proposed to reduce deviance by banning people with disabilities from having children, an idea taken up in later years by eugenic policies. I take it for granted that the existence of blindness, like every other physical infirmity, is the consequence of departure from the natural laws of God; that the proportion of blind persons in every community is dependent upon the comparative degree of the violation of natural laws; and the scientific observations can in almost every case point to the kind and degree of violation.30 In the manner of their Protestant British counterparts, US institutions believed that deviant behavior could at least in part be treated through vocational education. Thus, Howe’s institutions also adopted an asylum model. This belief was largely influenced by the principle of blending a work ethic with scholastic education. This work ethic was motivated by a Protestant moral mind-set,31 and scholasticism was informed by the phrenological theory that behavior could be changed through exercising the brain. Samuel Howe believed that his educational method would improve elements of intelligence and performance, and reduce deviance and immorality.32 Samuel Howe’s need to prevent deviance and immorality also led him to design a method of controlling the education of children without disabilities, in partnership with the educator Herman Mann.33 Samuel Howe and Herman Mann’s new educational method was designed to prevent disability in future generations, and the epidemic social degradation of the broader society. Samuel Howe and Herman Mann’s educational method was based on what they considered to be two inter-connected phrenological principles of education: the first principle was that the environment of education affected the body of the student, and the second principle was that the posture of the body physically affected their senses and intellect. Samuel Howe’s drawing of his classroom, found in Herman Mann’s scholarly article, Report of the Secretary of the Board of Education on the Subject of School Houses, 1839, illustrates this method well.34 The initial plan of the class was relatively unspectacular, as it was a rectangular schoolroom with the desks facing forward in neat geometrical rows. At the front of the class, was a raised platform with a board for writing exercises. At the side of each wall of the schoolroom, other than where the teacher sat, were windows to deliver ample sunlight. The most interesting and phrenological component of Samuel Howe’s design, however, was his design of desks and chairs. As I described above, the back of a student’s chair acting as the front on the student behind’s desk, making the back of each chair a ninety-degree angle against the front of the desk. The desk itself, was tilted towards the student by around thirtydegrees, giving a small well underneath the desk top for equipment, and meaning students had to sit straight to write.

26  The study’s theoretical background Designing schoolrooms based on this principle, Samuel Howe supposed in an appendix to the article, would change the students’ blood flow and subsequently the shape of their brains. Through this method, Samuel Howe suggested, the spread of disability and subsequently immorality throughout the wider population of Massachusetts could be suppressed. We should never read but in the erect posture; we should never read but when the arterial system is in a state of high action . . . I believe an attention to the physiology and laws of vision, by parents and instructors, would be of great benefit to children, and diminish the number of opticians; for as surely as a stone thrown up will come down, so surely the exposure to causes of evil, bring evil, at some time, in some way, upon somebody.35 For over a century, Herman Mann’s system of education, largely influenced by Samuel Howe, influenced the public school system throughout the US and its cultural consciousness.36 Subsequently, Samuel Howe’s design could also be said to influence public education and classroom design to this day. Anyone familiar with the modern layout of many Western schoolrooms and lecture theaters will recognize Samuel Howe’s as soon as you walk in. Scientific influences on late nineteenth century US education Moral treatment as an educational method of teaching people with disabilities evolved in a more reasonable fashion in the decades following the opening of Samuel Howe’s asylums. However, Samuel Howe’s belief that disability was a cause of immorality and deviance unfortunately did not disappear from the institutional consciousness in the US. The belief in a scientific basis of this link to immorality and deviance continued, and led to the passive and active exclusion of people with disabilities.37 As the philosopher and co-signatory to the Communist Manifesto, Fredrich Engels, observed on the development of scientific thinking in the middle of the nineteenth century, “It is precisely the alteration of nature by men, not nature as such, which is the most essential and immediate basis for human thought.”38 This alteration of “nature” that Fredrich Engels wrote about, led Western science to develop increasingly common categories of people, based on beliefs about different forms of impairment. The development of these categories was affected by the changing understanding of what “nature,” the new industrial society, scholastic and physical ability, and morality and emotions were. These new categories of people showed complex ideas of cultural opinions about ability and disability, based on an assumption of “natural” human perfection. These ideas subsequently influenced government policies in the US later in the century, particularly educational policies.

The enlightenment and disability 27 For example, following the publication of explorer Charles Darwin’s law of natural selection in Origin of the Species, 1859, Massachusetts’ Governor Ben Butler suggested the need to educate people with learning disabilities was of lesser necessity than previously thought. Given Darwin’s principle of the survival of the fittest, it was felt that moral treatment of learning disabilities would best be served by aiming education at those who were thought to be the intellectually able. Subsequently, those who were felt to be the least mentally able in this respect would not infect society’s morals, as Samuel Howe suggested, and intellectually fall by the wayside. Ben Butler’s idea borrowed greatly from Charles Darwin’s on the extinction of plants and animals, whose characteristics could not evolve to survive their environment: When the State shall have sufficiently educated every bright child within its borders, it will be time enough to undertake the education of the idiotic and feeble-minded. I submit that this attempt to reverse the irrevocable decree as to “the survival of the fittest” is not even kindness to the poor creatures who are at this school. Give them an asylum with good and kind treatment; but not a school. The report from that school shows that none of its pupils have been made self-supporting by its teachings. The report further shows that those in whom some spark of intelligence has been awakened, have become so ashamed of their school that when they write to their parents they beg for paper and envelopes which have not its card upon it. That is they have been educated simply enough to know of their deficiencies and be ashamed of themselves and their surroundings. We do not contribute to their happiness by giving them that degree of knowledge. A well-fed, well-cared for idiot, is a happy creature. An idiot awakened to his condition is a miserable one.39

Discussion It’s without doubt that philosophies and social movements have informed inclusion for people who are disabled, and helped us develop an understanding of exclusion. These philosophies have helped us understand what disabled people must tolerate in their daily lives. These philosophies have especially improved education and training since the Enlightenment; the primitiveness of beliefs about “nature,” disability and morality; brought our attention to the oppression of disabled and older people by their nondisabled peers. However, the promise of the philosophies written since the Enlightenment has been unable to move beyond the problems that characterize the mind – body problem.40 Before we can achieve inclusion, therefore, all ideas about disability and ageing must contend with this problem. Although the examples in this chapter are a snapshot of the Enlightenment, their part in the foundation of institutions for disabled people has at

28  The study’s theoretical background least in part been affected by the faults in our way of thinking. These ideas are also still being influenced by our immediate cultural and intellectual environment. As a result, writers and policy makers continue to miss-understand that impairment of a body part or a learning process has no effect on other, parallel but unrelated processes, such as intellect and morality. This lack of understanding includes the link between perceptual and cognitive impairments with lack of academic potential, or the link between a lack of academic ability and immorality. Theories on the body and mind have also been manipulated by our personal biases and stereotypes, to address larger philosophical ideas about human sciences of, such as how we think, see or hear. Subsequently, to develop a model of inclusion we must understand the human history of impairment to highlight how stereotyping has affected the cultural treatment and exclusion of disabled people. Given these circumstances, what should our way forward in developing new philosophical processes of understanding impairments and disability be? The answer to this question informs the rest of this book. The first course of action is to understand our current ideas about disability, and what I describe as an ethic of disability that arises from this understanding.41 Although the methodological model discussed in this chapter attempts to start this process, there is a great deal further to go in this regard. For instance, our study of knowledge of ideas about disability has yet to understand more subtle power structures of competition between different scientific theories of impairments. These power structures include those used to devise some categories of impairment without relying heavily on old ideals and beliefs about intellectual ability. A second course of action is to understand the belief systems that inform institutional policies, and the national and international laws that inform how people with disabilities are treated by society. These belief systems are traditionally over-simplified, as they need to streamline services and the administration of institutions. Yet over-simplification can often also be at fault for providing improper and poorly thought through policies that passively exclude people from many aspects of social and cultural life. The third course of action is to analyze and work on new models of philosophy that can treat individuals as autonomous from their disabilities, with unique characteristics. Above all, people with disabilities are unique humans who have unique cultural identities, based on their personal histories, their families and friends, and their education and careers. Until writing on disability can overcome its fundamental need to simplify highly complex issues and develop simple theories, then its process and methodology is not fit for purpose and leads to disabling practices. The fourth and final course of action is to heed the warning of the past, and its treatment of people with disabilities. As I showed above, institutional

The enlightenment and disability 29 approaches that led to both active and passive exclusion were evident in what were thought of as “natural” moral beliefs. This then led to the setup of separate schools and asylums. This is a salutary example of why we need to think about and publicly debate what we mean by inclusion before coming-up with theories and models of inclusion. These themes are now discussed in the next chapter, which looks at what I call the two worlds of disability: the practical world and the social world of disability and ageing.

Notes 1 Freire (1996, p. 26) 2 For instance, the work of social model theorists such as Michael Oliver and Colin Barnes discusses this work in detail. 3 Hayhoe (2015) 4 Diderot (2001) 5 See, for example, Hayhoe (2015) and Foucault (2001) 6 Hayhoe (2015) 7 Diderot (2001, p. 156) 8 de l’Epee (2014) 9 Demodocus (1774) 10 Weygand (2009) 11 Hayhoe (2015) 12 Hauy (1889) 13 Hunter (2002) 14 Schwab (2013) 15 Bristol Asylum for the Blind (1799, 1838, 1887) and Bristol School of Industry for the Blind (1908) 16 Padden (2005) 17 Asylum for the Support and Education of Indigent Deaf and Dumb Children of the Poor (1807, p. 5) 18 Craze (1972) 19 Hayhoe (2013) 20 Fletcher (1984) 21 Smith (2013) 22 Modern (2011) 23 Howe, Howe Richards, and Sanborn (1909) 24 Howe (1833, 1836) 25 Howe (1837) 26 McGiffert (1994) 27 Hayhoe (2015) 28 Howe (1837) 29 Howe (1837) 30 Howe (1837) 31 Weber (2001) 32 Howe et al. (1909) 33 Mann (1839) 34 Mann (1839) 35 Mann (1839, p. 300) 36 Boyd (1928) 37 Hayhoe (2015)

30  The study’s theoretical background 8 Engels (1940, p. 40) 3 39 Rogers (1898, pp. 152–153) 40 Nagel (2012) 41 Hayhoe (2016)

References Asylum for the Support and Education of Indigent Deaf and Dumb Children of the Poor (1807). Plan of the asylum for the support and education of the deaf and dumb children of the poor, including purposes of instruction; rules of the society; and list of the officers and governors. London: Shackwell. Boyd, W. (1928). The history of western education. London: A & C Black Ltd. Bristol Asylum (1799). The state of the Bristol Asylum for the blind from the 31st December 1798 to the 31st December 1799. Bristol, UK: Bristol Asylum. Bristol Asylum (1838). Appeal to the public by the Bristol Asylum, or the school of industry for the blind. Bristol, UK: Bristol Asylum. Bristol Asylum (1887). Annual report of the Bristol Asylum. Bristol, UK: Bristol Asylum. Bristol School of Industry for the Blind (1908). Exhibition and sale of work. Bristol, UK: Bristol School of Industry for the Blind. Craze, M. (1972). King’s School, Worcester. Worcester, UK: Ebenezer Baylis and Son Ltd. de l’Epee, C. M. (2014). Institution des sourds et muets, par la voie des signes methodiques. Charleston, NC: Nabu Press. Demodocus (1774). On the education of the blind (open letter, dated September 10th 1774). The Edinburgh Magazine and Review, 2, 673–686. Diderot, D. (2001). Thoughts on the interpretation of nature and other philosophical works. Manchester, UK: Clinamen Press. Engels, F. (1940). Dialectics of nature. New York: International Publishing House. Fletcher, R. C. (1984). The college on the ridge. Worcester, UK: The Trinity Press. Foucault, M. (2001). Madness and civilization. Abingdon, Oxfordshire: Routledge Classics. Freire, P. (1996). Pedagogy of the oppressed. London: Penguin. Hauy, V. (1889). An essay on the education of the blind (re-printed from the original from Paris, 1786). Leicester, UK: Tompkin & Shardlow, St Martins. Hayhoe, S. (2013). The philosophical, political and religious roots of touch exhibitions in 20th century British museums. Disability Studies Quarterly, 33(3), 7–25. Hayhoe, S. (2015). Philosophy as disability & exclusion: The development of theories on blindness, touch and the arts in England, 1688–2010. Charlotte, NC: Information Age Publishing. Hayhoe, S. (2016). The epistemological model of disability, and its role in understanding passive exclusion in eighteenth & nineteenth century Protestant educational asylums. International Journal of Christianity and Education, 20(1), 49–66. Howe, S. G. (1833). Address of the trustees of the New England institution for the education of the blind to the public. Boston, MA: Carter, Hendee and Co. Howe, S. G. (1836). Art. VIII: Education of the blind. The Literary and Theological Review, 3. Howe, S. G. (1837). Discourse on the social relations of man: Lecture to the Boston phrenological society. Boston, MA: Marsh, Capen & Lyon.

The enlightenment and disability 31 Howe, S. G., Howe Richards, L. E., & Sanborn, F. B. (1909). Letters and journals of Samuel Gridley Howe. Boston, MA: Dana Estes Publishing. Hunter, R. (2002). Forgotten hero: The life and times of Edward Rushton, Liverpool’s blind poet, evolutionary republican and anti-slavery fighter. Liverpool, UK: Living History Library. Mann, H. (1839). Report of the secretary of the board of education on the subject of school houses, supplementary to his first annual report. The Common School Journal, 1(19), 289–304. McGiffert, M. (1994). God’s plot: Puritan spirituality in Thomas Shepard’s Cambridge. Amherst, MA: University of Massachusetts Press. Modern, J. L. (2011). Secularism in antebellum America. Chicago, IL: Chicago University Press. Nagel, T. (2012). Mind and cosmos: Why the materialist neo-Darwinian conception of nature is almost certainly false. Oxford, UK: Oxford University Press. Padden, C. A. (2005). Talking culture: Deaf people and disability studies. PMLA, 120(2), 508–513. Rogers, A. C. (1898). Editorial: Does the education of the feeble-minded pay. Journal of Psycho-Asthenics, 2(1), 152–154. Schwab, J. (2013). Sociocultural roots of mental illness: An epidemiologic survey. New York: Springer. Smith, L. (2013). Sex on the brain. Journal of Family Planning and Reproductive Health Care, 39, 142–143. Weber, M. (2001). The Protestant ethic and the spirit of capitalism. Abingdon, Oxfordshire: Routledge Classics. Weygand, Z. (2009). The blind in French society from the middle ages to the century of Louis Braille. Stanford, CA: Stanford University Press.

3 Two worlds of disability

Introduction The last chapter showed how our current beliefs about disability and institutions come from the Enlightenment. In this chapter, I show how two important legacies emerging out of these beliefs still influence our ideas about disability, and how these legacies are an example of passive exclusion. The first legacy is that disability is a powerful cultural issue, which is manipulated, cured, and managed through education. Although in Western societies the term moral management finds less favor nowadays, we still believe that imperfection and disability need to be controlled through education. There is also still shame in being a person with certain forms of disability, and our culture of education is part of this process. For instance, although Enlightenment philosophy restricted disability to physical impairments and learning disabilities, in the late twentieth century disability expanded to include morally “bad” behavior. Consequently, what we now often refer to as behavioral difficulties are categorized, researched, diagnosed, and even treated as quasi-medical conditions rather than conditions that hamper learning. Attention Deficit Hypertension Disorder (ADHD) is one such behavioral condition and is increasingly being diagnosed as a quasi-medical condition in Western countries. So, children with ADHD are now regularly being treated with the medicine Ritalin to pacify them in cultural settings, even though the medicine restricts their intellectual ability.1 This causes passive exclusion of people from all forms of practice, such as education, and a disruption to the development of a non-disabled identity. The second of these legacies is the belief that children with disabilities should be educated separately from people without disabilities, as their deficit can be managed more easily through separation. Consequently, even though children with disabilities are increasingly included in mainstream schools, they often receive their education in separate classes, and through adapted tasks. Disabled people are also often taught using separate, parallel technologies, tools we traditionally call assistive technologies.

Two worlds of disability 33 These separate lessons, technologies and tasks are amongst the last forms of cultural and social exclusion that are acceptable by Western societies,2 and can be considered to be a form of passive exclusion. Subsequently, this acceptance of passive exclusion as regular “common sense” in practice reinforces the idea that disability is a “real” problem, and disabled people are a “natural” community. These issues present problems for people providing access to cultural heritage because our categorization and “treatment” of disability is often based on negative attitudes to disability. Importantly, these attitudes lead to different disabled identities, based on the institutional settings people with disabilities are raised in, and whether people are raised as a disabled person or not. This chapter now explores the experiences of these different identities, the tensions and issues these identities produce, and my attempt to rationalize these cultural identities.

The two worlds of disability The practical world and the world of beliefs As a person with a disability nowadays, you live in two parallel worlds that cause a disabled identity and the acceptance of passive exclusion as a part of this identity. The first world you live in is a practical world. It is a world of navigating objects and environments with impaired and worsening hearing, sight, movement, calculation, memory or learning. Your impairments will likely become stronger the older you are and may mean feeling more isolated from doing things you once enjoyed, such as working or visiting museums or theaters. Impairments and ageing makes some activities harder, or for some, without technology or support, impracticable, and this observation reinforces a belief in the “common sense” of passive exclusion. The second world you live in is a world of yours’ and others’ beliefs in your capability or incapability. This world is also demarcated by what cultural institutions, such as schools, colleges or museums, think you’re physically and intellectually capable of doing. This world of beliefs is a place where you may find yourself prevented from visiting historical buildings or national parks or getting to see or play sports because of your disability. It may also be a world where you need more support from others, and from the places and spaces that you enjoy visiting. However, even if you have a supporter, this supporter may not know your needs, treat you without knowing your true capabilities or may treat you with less dignity. This need for extra support for people with disabilities is well-known. For instance, the World Health Organization (WHO) defines disability according to everyday practice, the impairment to tasks that make up our

34  The study’s theoretical background daily lives, and the barriers that are put in place that lead to disability. This will affect most people during their life course and leave the person who is labeled as having a disability vulnerable to passive exclusion. Consequently, as well as the physical and intellectual impairments that can slow us physically and intellectually, the WHO suggests there are also powerful cultural restrictions that result from being disabled. Disability is part of the human condition. Almost everyone will be temporarily or permanently impaired at some point in life, and those who survive to old age will experience increasing difficulties in functioning [. . .] Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.3 Of these two worlds, the latter world of beliefs and barriers is the most dangerous for disabled people, as it is the one most likely to lead to passive exclusion. For instance, if you’re visually impaired you may have a problem with reading a book or seeing a piece of art. These books and artworks are cultural and social objects, often written, painted or manufactured on the expectation of a sighted reader or viewer. If you have some remaining sight, it will be difficult to see the text or images if this text or image is standard sized or standard colored. This problem will likely deteriorate with age. If you have no sight, you will not be able to get the most out of a high-street bookstore, gallery or library, choose a book or exhibition, or read your book or view your artwork as many others do. Examining books and reading especially are chiefly seen as sighted activities, and book stores are largely designed for sighted people. This may cause you tensions as a person with a non-disabled identity, as you try to come to terms with your new impairment and considering yourself as disabled. Similarly, if you’ve impaired senses or impaired limbs, mobility will be a problem. You will have to move around in a world where it’s assumed you have good sight and hearing, and the use of your arms and legs. You may also have a problem getting information that people with fuller sight do from signs, designed with good sight in mind, and again this can cause tensions to your sense of identity as a non-disabled person. Consequently, you’ll also find it difficult to get around your surroundings without bumping into or moving over objects, and as you get older your limbs become more tired, and less able to adjust. Buildings’ interiors are largely designed with free movement and vision in mind, and so the person struggling to get around such buildings are at risk of passive exclusion.

Two worlds of disability 35 For people with many different impairments, driving also becomes improbable, and as you age and become more infirm you’ll be banned from driving by law anyway, leading to legalized passive exclusion. Walking a route to school, work or the local shops may also mean you need to find assistance, at least at first, or practice weeks of walking routes with a friend or colleague or a wheelchair. Pavements and roads have been designed with the ability to walk, hear and see freely in mind, and so not fitting in with these publically “accessible” environments leads to passive exclusion too. Walking with an impairment may also mean practicing your turns and paces or training a guide dog to remember the way for you. Again, this practice and training becomes harder in old age, and developing this disability as an old person makes this transition harder, therefore making you more vulnerable to being excluded from tasks you once enjoyed. As a person with a learning difficulty you may also have had a different issue. Although as capable of learning as others, you may need to adapt your learning and communication techniques, as thinking is assumed to be an activity done by “the intelligent.” Some schools and all universities are designed as intellectually exclusive institutions, even though many of them are financially subsidized by the public with this “exclusivity” developing an elite graduate identity. As a person with a learning difficulty, you may also need to develop ideas through speech and pictures, rather than through writing. Your learning difficulty may also be thought of as inappropriate because people assume writing is the way you should communicate your ideas, emotions or academic ability. Therefore, not learning as you are expected to do, usually through the written word in a single language, can lead to passive exclusion and a belief in your disabled identity. As you age, your ability to learn will also become harder, because your once “normal” learning skills and methods become harder, and your shortterm memory lessens. This again causes tensions, and a form of passive exclusion from intellectual tasks you once found fulfilling. Education is largely designed around an understanding that students will have good sight, hearing and be able to process information easily and any impairment to this process reinforces a disabled identity. If you’re more dyslexic or dyspraxic than most – and everyone is both to a certain extent, as these traits are now seen as “spectrum disorders”4 – you may need audio books, or you may need to try harder to organize yourself, your thoughts and your life. You may also need to take notes of details and tasks to stay in control of them. If you have more dyspraxia especially, organization and coordination at work and in education becomes increasingly more difficult. These extra forms of support reinforce your disabled identity, as having a deficit and in need of extra support caused by a deficit. You may also need to check your spelling through technologies or peers, or you may need to get others to read over what you’ve written and give constant feedback. Tasks are largely designed with the assumption that the

36  The study’s theoretical background participant in the task can organize themselves autonomously, which again means needing support can reinforce the notion of a disabled identity. If you have any form of learning impairment, you may need more time in exams or tests at school or college, as it’s expected people with certain “levels of intelligence” can do exams more quickly. Similarly, as a student with a learning impairment, you may need to spend more time using technologies or studying in a library. As you age, your opportunities to learn, and your energy to concentrate, also deteriorate further, making this learning harder to cope with, causing tensions in your previous non-disabled identity. Similarly, if you have a hearing impairment, you’ll find it difficult to hear a conversation. If you have hearing left or distorted hearing, this problem remains difficult in many situations, especially if you’ve got tinnitus,5 which disrupts your thought processes with a constant tone. Sometimes, you may find this tinnitus becomes too much, and the constant tone it makes, causes anxiety or becomes painful. As you age, you also become less tolerant of being unable to hear or being in pain from tinnitus. Subsequently, as well as causing physical pain, it can disrupt a sense of wellness and reinforce a disabled identity. Social and cultural experiences of impairment As a teacher with distorted hearing myself, I sometimes find it difficult to function in classes or meetings as groups of people often talk amongst themselves. This background noise is often the case in a world designed largely on speech as our main means of communicating. This can challenge the non-disabled identity I was raised with and have worked hard to conserve. In class, I often ask students or colleagues to quieten down, talk one at a time or face me when they talk to me, and they’re always obliging when I ask. However, background noise is always going to be a problem for me at work, and can challenge my ability to teach – this leads to an unusual issue of passive exclusion where the teacher is seen as at a disadvantage. However, small adjustments to normalize classroom practice can help. Seeing the faces of the people I’m talking to helps a great deal, even if they wear a full niqab, as was the case when I taught in the Middle East. Seeing faces helps me to see face-muscles, especially those around the eyes, which helps me get visual clues about what people are saying and helps reinforce my identity as a capable teacher. However, without my hearing aid, life becomes harder, and I struggle to adjust to “normalized” teaching practices. Having to explain my hearing problem can be especially difficult, and in some cases, it can be embarrassing. Explaining my situation can also mean I’ve got to exist in a different world. This situation can change people’s reactions to me, the way they see me, or the way they think I should be treated afterwards, as my students can assume I have a disabled identity. I’ve never had a real problem with this, but there are quirks.

Two worlds of disability 37 Three examples of these quirks come from my time as a school teacher nearly ten years ago. The first example was a girl I taught at high school who had a hearing impairment herself but refused a disabled identity vehemently, rejecting anyone who she assumed had this identity. I didn’t know about her impairment at first, but I was aware she didn’t like me when I met her. I had to go through months of her worsening behavior, resentment, and even her refusal to talk to me before a colleague explained it was probably because I wore a hearing aid. The student didn’t want to wear a hearing aid herself because, as an emotionally vulnerable teenager, she thought of it as a piece of jewelry that made her look imperfect. The second example was of passive exclusion by a student I taught who didn’t believe I had a problem hearing at all, as I didn’t fit his image of a person with a disabled identity. This student, a pleasant boy in every other way, thought I especially didn’t need a hearing aid. My voice was too normal for his liking, I functioned too well and in his opinion I couldn’t qualify as a teacher with a hearing problem – although admittedly, he also didn’t know I didn’t get my hearing aid until after I qualified as a teacher. When I explained to the boy that I needed to see his face when he spoke, he thought it would be interesting to test me. At first, this boy would often try to mouth words without saying them when we were talking. Of course, this is ridiculous because unless you’re a trained signer and lip reader – I’m neither – you don’t know how to mouth or read lips properly. What’s more, people trying to mouth words without knowing how to do it properly just end up looking as if they’re giving their face a workout or miming badly without music. I pointed this out to my student, and told him to just speak normally, and in the end, we got on just fine. The third example was an over-enthusiastic colleague, whose assumption about my inability formed a different form of passive exclusion to the boy in the second example. Unlike this boy mouthing words, my colleague wanted to help too much, feeling I needed help all the time and would want this help because I must have a disabled identity. At first, when I was talking one-to-one, she would face me very obviously, speak louder – for people with distorted hearing this can be painful – and she talked in a highly exaggerated way. When I was on break duty, she once appeared behind me, tapped me on the shoulder and made me turn to face her. This tapping on my shoulder and insistence on being talked to like this could be a little un-nerving. I appreciated this teacher trying to be supportive at first, even though I found it embarrassing, but finally it almost became a recital that she wanted to be seen to perform. It was as if this performance was for the children and other staff to follow and appreciate, more than it was for me to hear her. In the end, this teacher also became like the boy in the second example, and she doubted my hearing problem when I appeared to hear other teachers and children who didn’t perform.

38  The study’s theoretical background It’s not the place of this book to discuss the technicalities of sensory impairment, but when you have a sensory impairment, you have different levels of hearing or vision in different environments. Some people with sensory impairments also find different points in a conversation harder or easier, often depending on whether they’re feeling alert, or whether they’re tired or stressed. Fluctuations in hearing or seeing may also mean you hear better or worse at different times. There are no hard-and-fast rules to any form of impairment, or the effect it has on your body or mind. However, like the dubious school boy, I didn’t behave in a way this teacher expected or wanted me to, and I didn’t have the disabled identity she wanted me to have: I wasn’t the classic deaf person she thought I should be. I don’t know if she had deaf, or deafer, friends, family or colleagues, or it was just an image of what she thought I should be. I never got to discuss this issue with her. Either way, I didn’t fit, I wasn’t deaf enough for her, and consequently she ended up ignoring me. The experience of passive exclusion from people not believing in your impairment isn’t uncommon for people with disabilities who appear to functionally “normally” and don’t have a disabled identity. My PhD supervisor and academic mentor, for instance, the theologian and educator, John Hull, also described this experience in his autobiography, Touching the Rock, which was on transition to blindness.6 Being an independent and highly capable man, in his book John described navigating his way to Birmingham University from his nearby home using a white cane. He eventually walked this route so successfully, knew the pathway so well, and navigated so smoothly, that one person shouted at him, “You’re not blind,” thinking his cane was affectation. Unfortunately, this harassment became an all too common experience for John as a highly professional and well-regarded university professor with a sense his impairment didn’t cause a disability. Paradoxically, the more determined he became to remain a functioning professional teacher and writer, and the more able he became through adaptation, the less people believed in his disability. In my previous research on arts education and disability, I have also seen how social and cultural issues can alter people’s identities, causing a tension in the acceptance of a disabled identity. This became apparent in my earliest research on human relationships within the arts and cultural heritage. For example, when I began researching art education in 1993, I attended a continuing studies studio at Leicester University, UK, which held arts classes for people who identified themselves as disabled. The days I attended were reserved for arts classes for adult students with disabilities, courses that I have previously discussed in my book, Arts Culture and Blindness,7 and in the preface to my book, Philosophy as Disability & Exclusion.8 Most of the students in the studio I studied were recruited from a local society for the blind, and a large part of the studio was populated by its

Two worlds of disability 39 members, who were county-wide. As there was a sizable number of visually impaired students in the studio, this community often filled whole tables, whereas other tables remained filled with students with mixed impairments. What was particularly noticeable about this seating arrangement was that the table filled entirely with students who had their visual impairment when they had become disabled as young children. They had also attended schools for the blind, and some were from the same school. By contrast, the other tables were often filled by people with later disabilities, usually developed in old age, or who had another disability and had been to another type of special school. A more nuanced examination of this observation highlighted two similar issues related to passive exclusion and the acceptance or refusal of a disabled identity. The first issue was that none of the visually impaired students in the studio wanted to be segregated, and they particularly didn’t want to be segregated from students with other disabilities. However, these visually impaired students were the largest community in the studio. Most of this group of students sat with those whom they felt most comfortable, and they needed other students whose level of understanding and experience of art they could understand most. Subsequently, it seemed they not only had a disabled identity, they thought of themselves as a specialized disabled community, one where their identity was secure and normalized. The second issue was that people who lost their sight in later life were more likely to sit and mix with people with other disabilities in the studio, or work with those who developed disabilities in old age. These students all attended mainstream schools when they were children, or these students had a mixture of mainstream and special education, and most of them had highly successful careers. Subsequently, they seemed to reject the specialized disabled identity of their early blind fellow students, relating more to the members of the class with alternative disabled identities. The students who mixed on their tables were also more likely to have mixed with other non-disabled people in their early years. These students were also more likely to have non-disabled friends, or a husband or wife. They were less likely to accept passive exclusion, and were finding it difficult to accept a disabled identity, even though they had accepted this mantle to enter the class. It is true that students who had other disabilities early in life mixed on tables too. However, these students rarely had other peers who had been to similar special schools. For instance, one student sat on a table with other students, and was also the only person who used sign language in class. The students who also sat on tables alone were more likely to be younger, in their thirties in the main, whilst the older students sat together. Consequently, it seemed that each of these people’s identities had been influenced by a different form of passive exclusion and had formed a different form

40  The study’s theoretical background of disabled identity; the only thing that connected these students was an acceptance of their passive exclusion. So, how do people develop disabled identities according to their early cultural and social experiences of impairment and passive exclusion?

Issues with the social understanding of disability Disability as a political, cultural, and social issue One of the biggest dangers of the world of passive exclusion and the acceptance of a disabled identity is, this world can over-emphasize disability as a political and social issue, rather than a practical and individual issue. This issue also emphasizes an artificial category of “the disabled” or “the aged” through passive exclusion, which conveys an image of a deficient community in the social and cultural consciousness. Although there are certainly elements of social class and economic disadvantage to the social exclusion of disabled and older people – these issues were of course highlighted in the previous chapter, when I discussed the history of private special schools – my previous research found disabled people’s cultural identities were also often as important. For many writers on disability, social exclusion is always thought to be direct or deliberate – what I call active exclusion – rather than indirect or due to the nature of an activity or institution, or through inadequate ­knowledge – what I call passive exclusion.9 For instance, the UK government’s guidance to its judiciary on social exclusion focuses on the outcomes of social deficit, such as lacking economic and educational attainment. Therefore, as a person with a disability you often have your social and economic status judged and “treated” more than the practical issues you face within institutional settings. Therefore, your provision for support is often designed less to equalize these deficits and more to rectify a simple understanding of your ability to socialize and blend in with others. The term “social exclusion” refers to a situation of economic or social disadvantage. It incorporates, but is broader than, concepts like poverty or deprivation, and includes disadvantage which arises from discrimination, ill health or lack of education, as well as that which arises from a lack of material resources.10 Similar problems of disability and socialization were written about in the early twentieth century by the Russian psychologist, educator, and what the Soviets referred to as “defectologist,” Lev Vygotsky – the term “defectologist” would now roughly equate to a special educator. As a “defectologist” working mostly with children with hearing and visual impairments, Lev Vygotsky found these children’s education was assumed to be part of an active cultural deficit.

Two worlds of disability 41 This assumption of deficit shouldn’t normally be thought of as the teacher’s fault, Lev Vygotsky argued. Teachers were trained and raised using techniques, instruments, and tools that restricted their relationships with their students. Teachers often had a different cultural upbringing that was felt to be superior, and that led to a negative belief in the abilities or inabilities of the children they were asked to teach. Teachers and their students were also placed in schools that reinforced this sense of difference, deficit, their place in society, and even their status as “defective humans.” Being a communist society, this functionality was reduced to an industrial analogy, like Protestant asylums a century before; although Lev Vygotsky was often guilty of this reduction himself, as he promoted structured IQ testing, which often associated low social and economic status with a deficit of intelligence. When Soviet students with disabilities left their separate schools, Vygotsky wrote, they had to face a world that they found difficult to relate to. This was a world that had been developed for people with a privileged mainstream education, a different type of vocational training, and consequently a different social and cultural life. Consequently, Lev Vygotsky felt students with perceptual impairments needed social and cultural as well as academic and vocational training in their schools, which would help them survive after leaving. As he wrote in 1925, Every physical defect, be it blindness or deafness, alters the child’s attitude towards the universe and, primarily towards its fellow beings. Let us take, for instance, the geometrical place of a human being in the social sphere, his part and his fate as a partaker of life and all functions of social existence, and we shall all come to the conclusion that everything is to be entirely altered in the case of the human being with any defect. Any physical defect provokes a social sprain, with unavoidable consequences It goes without saying that blindness and deafness are biological facts and not at all of a social nature, but the teacher has to deal not so much with these facts as with the social consequences of these facts. When we have a blind child as an object of education before us, we are compelled to deal not so much with the blindness itself, as with the conflicts which arise therefrom within the child when it enters life . . . Blindness or deafness, as a psychological fact, is not at all misfortune, but, as a social fact, it becomes such.11 Two outcomes emerge from this social exclusion. The first outcome is the artificial development of social and cultural groups – the analysis of which was referred to by the sociologist Charles Wright Mills12 as a sociological imagination. The second outcome is the struggle between knowledge and power that is a part of exclusion, and its effect on the social and cultural identity of a person with a disability.

42  The study’s theoretical background For example, in the early study of the art studio at Leicester University I described above, I felt these groups reflected a splitting of identities of people with disabilities. Subsequently, what is called the social model of disability, which is a theory that believes there is a uniform disabled community built on Mills’ sociological imagination, seemed incomplete to me. For example, the theory of the sociological consciousness and the social model examines disability as if it were any other community, such as an ethnic group or a gender.13 However, this assumption missed a serious point as, gender reconfiguration aside, most people with disabilities have life experiences as a non-disabled person, whereas most people’s genders and ethnicities are theirs for life. In addition, what we now call disability culture does not have an equivalent “other” community, where people think of themselves as part of this opposite community. For example, female communities see themselves as the opposite of male communities. African American communities are crudely seen as the opposite to European American communities – and as I write, this oppositeness is causing a great deal of friction in the US. However, there is no non-disabled community that thinks of itself as opposite to disabled communities. Disability also can’t be compared to class or religion, as changing social class or religion is largely a conscious decision, whereas disability is almost always involuntary. Gender, ethnicity, social class, and religion as social and cultural communities also aren’t defined by physical or natural barriers to their daily lives, such as impaired movement or perception. Admittedly, there are significant issues that are common to people with disabilities, which are common to people from other social and cultural groups. As John Hull discovered, disabled people can suffer bigotry and intimidation based on what people assume that they “are,” as other social and cultural communities do. However, even the causes of the bigotry and intimidation of people with disabilities are based on different forms of mythology to those from other social and cultural groups – as I discussed in the previous chapter. People with disabilities can also still face attitudes and beliefs about their morals that can hamper their social and cultural progression. Most particularly, poorer people with disabilities certainly find it more difficult to access vital support services and education. Furthermore, the social model of disability also ignores the unique and complex identities, and often transitions of identity, that disabled people live through in their daily lives and as they age. Consequently, to see people with disabilities as just another community as the social model does is a one-dimensional understanding of disability and the disabled community. Having rejected a social model of disability, I tried to develop an understanding of people with disabilities as having complex conscious, subconscious, and cultural identities. As identities are formed from early experiences

Two worlds of disability 43 and memories, I hypothesized that the earliest experiences disabled People had later influenced the experiences and behavior I observed. Categorizing identities according to self-belief Traditional models of categorizing people with disabilities in education and the support they receive by social services are based on the perceived physical strength of impairment. This strength of impairment, as I recently wrote in Philosophy as Disability & Exclusion, is based on medical and psychological testing – although testing not necessarily carried out by physicians – on the bodies or minds of people with disabilities.14 However, as I did with the social model of disability, I problematized two significant issues with the traditional categorization of disability. The first problem was, the individual development of people’s personalities is assumed to be based on their most disabling impairment, such as dyslexia, Downs syndrome or hearing impairment. On the other hand, I also found there were so many different forms and degrees of disability – not to mention cultural, social, and psychological experiences of disability – that a single category of disability was unworkable. The second problem was there were scientific and cultural myths constructed around the notion of certain impairments in institutional education. Furthermore, as I observed in later research, the categorization and educational policies of different countries are based on issues, such as religion, academia, and politics.15 For example, I found most academic studies on education and disability largely concerned themselves with understanding people with profound disabilities and people born with disabilities.16 However, people who are born with certain disabilities only represent a minority of people with disabilities. In contrast, the great majority of people who have disabilities become disabled in old age.17 Another common myth is the understanding that impairment in education or cultural heritage, even in its most extreme forms, should be considered a health issue. Subsequently, methods of educating, training, and supporting people with disabilities are still being referred to as therapy, such as occupational therapy or art therapy. These therapies don’t help people overcome an understanding of support as aspirational, but instead see support, education, and training as merely developing the survival of disabled people. Disability is admittedly often the result of an illness or accident, aging or other form of physiological or psychological impairment. However, support for disabled people is essentially practical. For instance, in education, the use of customized technologies and pedagogies is sometimes needed to help develop academic and cultural learning rather than defining learning as therapy as an end itself. My early research on disability suggested that student experiences and the attitudes towards students with different disabilities varied a great deal.18

44  The study’s theoretical background This variation was not only caused by differences in impairment, such as whether the students had a visual or hearing impairment, but also by their experience of people and cultural places they knew well. During observations, I also noticed that past experiences of family, friends, and peers were especially powerful; they were often even more powerful than the type or level of impairment in forming students’ identities. These observations suggested a simple model of understanding people’s identities according to cultural identity, one that needed to feature an understanding of personal histories. Importantly, and as my observations suggested, these new categories specifically had to reflect identities formed by school experiences. It was largely at school, I found, that disabled people came across pervasive attitudes about their ability, their potential, and the restricted ambitions they faced. These negative attitudes were hard to escape for the former students of special schools I met. Since many who attended traditional special schools were boarding students, they were in an autonomous community, and rarely had friends without disabilities. This unvarying community also often led to tightly knit, autonomous communities later in life, with friendships and an alternative culture that would last beyond leaving school. These categories informed the model of inclusive capital I describe in the following chapter. The categories I eventually developed were like those I’d used purely in research on visual impairment in my earlier research, and were inspired by the work of the Austrian psychologist Berthold Lowenfeld.19 This led to the following three categories of identity: 1 Born with an Impairment, or Impaired Prior to School – disabled from birth or very early in life, 0–4 years. In previous studies, I observed these people often had few friends without impairments, or knew few people without impairments outside their families. These people also often had their own language and dialect – for example, older blind people I met called themselves “blinders,” and the deaf people I met were much more likely to only use sign language. Case studies of people with similar identities can be found in my book, Arts Culture and Blindness at the universities of Leicester and Bristol.20 2

Impairment in Late Childhood or Early Adulthood – impaired from mid to late childhood, 4–18 years. In previous studies, I observed these people were often educated in special schools after first attending a mainstream school, and subsequently had numerous peers and friends without disabilities. Furthermore, these people were more likely to be familiar with mainstream

Two worlds of disability 45 culture, and often resented being sent to special school, often striving for inclusive further and higher education. These people also sought out “normal” careers, and sometimes wanted careers that challenged their impairment – an example of one such person is Michael, an illustrator who was registered blind, whom I describe in chapter one of Blind Visitor Experiences at Art Museums. 3 Impaired in Older Age – impaired in adulthood, 18+ years. These people had attended mainstream school, and had few disabled friends often. These people also tried to preserve the habits they had before they became disabled. Many of the people in my studies who were disabled in adulthood also refused to refer to themselves as disabled, or even believe they had a disability. This was particularly noticeable in older age, where people I talked to could feel a sense of shame at having a disability, and tried to do activities they once did to preserve their identity. Of course, this is not to say that these categories are hard-and-fast, and those that I have studied always fall neatly into these categories. For instance, I have worked with people who were born with disabilities, but whose parents refused to send them to a special school, or refused them special education. I have also worked with people from highly educated backgrounds, whose families educated them culturally at home whilst allowing them special education at school. There are also quirks of disability when, during life course, a person can have a moderate disability that becomes a profound disability. Or, more commonly, as people age with a disability they are born with, they develop newer, more debilitating disabilities separately in old age. An example of the last experience is Joni, a case I wrote about in Blind Visitor Experiences at Art Museums.21 Joni was not born with a disability, but developed a form of disability as a child and received special classes in her mainstream school. As she came from a highly educated family, Joni did not let her disability hamper her education or her love of museums and artworks. However, as she became older, Joni became less physically able and mobile. This became a new disability that she had to come to terms with, but one she did not identify herself as having. Consequently, although I saw these categories as being a practical guide to identities for cultural access, I didn’t see them as scientific categories or as categories of experimental identity.

Discussion Disability is the most miss-understood of modern issues. Perhaps of all ideas, disability is also the least black and white philosophy we have constructed, policy makers have defined or institutions have

46  The study’s theoretical background “treated.” Unlike ethnicity, class or gender, disability has no obvious opposite community, as non-disabled people are thought to be “the norm” rather than the opposite. Consequently, disability has no women in opposition to men, working class in opposition to middle and upper classes, or African American in opposition to European American. This means that traditional sociological analyses by theorists, such as Mills’ sociological imagination or social models of disability, do little to explain the disabled identities I identify above. They particularly have little grasp on the complex and unique experiences that people with disabilities, some of which I have outlined in this chapter, must face daily. Even traditional theories of oppression are not viable when describing disability, because disability as an idea has been used to suppress other communities who have been subjugated – for instance, women, workingclass people, gay people, and people from various ethnic groups have been accused of being morally, emotionally or intellectually disabled in different eras. Disability is therefore perhaps the last prejudice that is still seen as “natural” and normal. It is also an issue we still largely regard as justifying separation of people with disabilities from mainstream society through technology, education, institutionalization, and support. And yet realistically we can all be said to be disabled in something at some time on a scale of ability. In practical terms especially, we can also find that disability is something we have all experienced on a daily basis to some degree: from not being able to run as fast as we’d like to not being able to walk; from having to wear a pair of glasses for reading to not being able to see ink-type at all; from not being able to reach a high or low shelf, to not being able to stand, control your limbs or reach forward at all; to having to walk with a limp or flat feet, to having to use a wheelchair or crutches for personal transport; from not being able to hear with clarity, to only able to communicate through sign language. Disability can also be the outcome of making ourselves more able in another field of life. For instance, I can be a good runner but a terrible “thinker.” I therefore concentrate on training as a runner rather than developing my intellect. I can also find I am good at running long distances but terrible at running short distances, and vice versa. Consequently, I concentrate on training my body or mind to be good at one activity, but lessen its ability to be good at another. This push-pull of abilities is a restriction we impose on ourselves, and yet socially and culturally we don’t think of this as a disability, but as sensible and practical practice. Subsequently, when we do not call ourselves disabled, we focus on an aspect of our ability rather than the disability we have, or the possible ability we’ve neglected. Consequently, the identity of thinking of ourselves as disabled or having a disabled identity becomes as important as the practical issues that “having” a disability causes.

Two worlds of disability 47 This is not to say that having a bodily impairment can’t cause a disability. There are, of course, people with such impaired bodies for whom any movement, sensing or intellectual development is extremely difficult. Yet, to call them or ourselves, or to be called, disabled by others and society at large, immediately focuses on a complex deficit that we should live with, to justify the image of what we should be. This state of thinking of ourselves as, or being told we are, a deficit consequently becomes our disabled identity. So, how can we find a solution to the categories of a disabled identity, which I identified in the chapter above, without destroying our ability to develop practical solutions to our disabilities? To address this question, we need to attack philosophies that have created social and cultural categories of disability, and see disability as a complex practical issue rather than an identity. To develop an alternative to this understanding of disability, in the next chapter I introduce a model of inclusive capital. This model, I argue, can help reduce the disabled identity, and focus on practice that develops inclusion in cultural activities, which I will then focus on in the remainder of this book.

Notes 1 Singh (2004) and Chan, Dennis, and Macleod (2016) 2 Hayhoe (2014) 3 WHO (2011, pp. 1–2) 4 WHO (2011) 5 I write about this issue in greater detail in a recent essay (Hayhoe, 2017) 6 Hull (1990) 7 Hayhoe (2008) 8 Hayhoe (2015) 9 Hayhoe (2016) 10 HM Government (2013, pp. 1–2) 11 Vygotsky (1994, pp. 19–20) 12 Mills (2000) 13 Cole (2006) 14 Hayhoe (2015) 15 For example, see Hayhoe (2015) 16 For an example of this research in relation to blindness, see Hayhoe (2015) 17 WHO (2011) 18 Hayhoe (2000, 2008) 19 Lowenfeld (1981) 20 Hayhoe (2008) 21 Hayhoe (2017)

References Chan, J. Y., Dennis, T. A., & Macleod, M. A. (2016). The over-prescription of Ritalin for suspected cases of ADHD – revue interdisciplinaire des sciences de la santéinterdisciplinary. Journal of Health Sciences, 2(2), 35–40. Cole, M. (2006). Education, equality and human rights: Issues of gender, ‘race’, sexuality, disability and social class. London: Routledge.

48  The study’s theoretical background Hayhoe, S. (2000). The effects of late arts education on adults with early visual disabilities. Educational Research & Evaluation, 6(3), 229–249. Hayhoe, S. (2008). Arts, culture and blindness: Studies of blind students in the visual arts. Youngstown, NY: Teneo Press. Hayhoe, S. (2014). The need for inclusive accessible technologies for students with disabilities and learning difficulties. In L. Burke (Ed.), Research, reflections & arguments on teaching & learning in a digital age. Melton, UK: John Catt Educational Publishing. Hayhoe, S. (2015). Philosophy as disability & exclusion: The development of theories on blindness, touch and the arts in England, 1688–2010. Charlotte, NC: IAP. Hayhoe, S. (2016). The epistemological model of disability, and its role in understanding passive exclusion in eighteenth & nineteenth century protestant educational asylums. International Journal of Christianity and Education, 20(1), 49–66. Hayhoe, S. (2017). Blind visitor experiences at art museums. New York: Rowman & Littlefield. HM Government (2013). Equal treatment bench book. London: Judicial College. Hull, J. (1990). Touching the rock: An experience of blindness. London: SPCK. Lowenfeld, B. (1981). Berthold Lowenfeld on blindness and blind people. New York: AFB Press. Mills, C. W. (2000). The sociological imagination. New York: Oxford University Press. Singh, I. (2004). Doing their jobs: Mothering with Ritalin in a culture of motherblame. Social Science & Medicine, 59(6), 1193–1205. Vygotsky, L. S. (1994). The Vygotsky reader. Oxford: Blackwell Publishers. WHO (2011). World report on disability. Geneva: World Health Organization.

4 Inclusive capital and human value

Introduction Building on my last two chapters, this chapter describes how we learn inclusive capital, and how inclusive capital forms our identities. This description of inclusive capital is formulated to develop an analysis of the cases in the following two sections of this book. My observation that we develop inclusive capital evolved out of a survey of previous philosophies of human value, the ideas they shared and their description of the value of capital. In common with these previous philosophies, I was interested in the way human value influenced identity and behavior, and its ways of thinking about motives and desires. Human value also seemed to be an effective way of understanding our personal knowledge, activity, and skills, and how these elements shape our personality, memory, and character traits. For instance, in the study of education, knowledge of books and their contents can hold inclusive value; study skills we are taught in class, or that we learn through practicing these study skills can hold inclusive value; what we call the “good” or “bad” behavior and habits that we learn, which are thought to make us productive members of society, such as queuing and being polite can hold inclusive value; the way that we learn to dress or the way we talk to others can hold inclusive value to us and those around us. Moreover, the informal knowledge we learn outside formal classes also derives value for us as individuals. This value can be informal knowledge and skills we learn in the school yard, such as who is popular, or who should be avoided and why; what clothes we need to wear to make ourselves accepted by our peers. Alternatively, we can value when to use certain types of language, such as slang and swearing, and with whom this language is socially acceptable. Our moral and immoral knowledge, such as the rules of bullying, and how to exclude others who don’t fit our rules of social acceptability can also hold a more negative value; and hierarchies of power in the schoolroom or school yard, or the development of sexual and romantic relationships can be said to hold value, as they are valued.

50  The study’s theoretical background What’s more, even moral values we often don’t align ourselves with can be said to hold value to those who hold those moral beliefs. For instance, a knowledge of how to steal, what is acceptable to steal, and who the most vulnerable members of society are can be said to have pernicious value. In common with the topic of this book, knowledge of our interactions in museums and national parks can be valued and hold value. These values can be the measurement of our knowledge and our motivation for visiting museums and national parks that for us hold cultural value. Value can also be said to be in the subconscious habits that dictate the way we learn to gain access to museums. Value is also in the understanding or lack of understanding of the importance of museums and national parks. The outcome of this knowledge and practice can also be a sense of inclusion and a feeling of well-being that visiting cultural institutions brings, as it makes us feel valued. Consequently, and as I illustrated above, value does not have good or bad qualities, as morals themselves are valued according to our own, individual values. In the previous two chapters, I talked about the creation of different institutions for people with disabilities, and the practical and the social worlds that people with disabilities live in. I also argued that the social world of disability is the most dangerous of these two worlds. I finished this argument by arguing that disabled people’s identities can be roughly categorized in three ways: people who have early disabilities, and whose peers are mostly disabled; people who acquire a disability in childhood, and so must go through the transition from mainstream institutions to institutions for people with disabilities; people who become disabled in later life, but who only know mainstream institutions as children. In this chapter, I develop this idea by arguing that all three identities, as well as the practical skills needed for inclusion, are developed by different forms of values of non-economic capital. What’s more, I also argue that these disabled identities demand different forms of access strategies, from technical and educational access, to access based on spaces and places alone. This is what the widest used models of disability, such as those described as the medical and the social models of disability, have done little to emphasize in the past. I start this discussion by outlining a survey of philosophy on human values that evolved into theories of non-economic capital, and by describing how the philosophical history of human capital as value evolved.

The evolution of ideas on capital Adam Smith and Karl Marx on human labor and human value The observation that human skills and knowledge had value was first understood in the eighteenth century, and became a driving force of the

Inclusive capital and human value 51 Enlightenment and the British industrial revolution. Arguably, the first method of valuing knowledge and behavior was first discussed in 1776 by the Scottish philosopher and founder of Capitalism, Adam Smith, in the first edition of his book, The Wealth of Nations, as one of three classes of economic capital.1 In The Wealth of Nations, Smith also suggested that capital should be measured through quantifiable human labors, such as how many of a certain product a human made. This distinction between human labors and the work people do, rather than the human body as capital, was an important distinction to make. As Smith observed, before the industrial revolution human capital had mostly been thought of as a “thing,” like gold, money, land or tools. These systems had mostly existed in slave-based or feudal societies, and Smith himself wrote in the last full century of legalized Western slavery. Consequently, in Western societies, humans from “lower” social strata were merely valued as possessions or chattels, which could be bought, sold, owned, and treated as commodities. In the feudal and semi-feudal systems that still existed at the time of Smith, workers were also tithed to their land and homes, with little chance of social or cultural development. During the industrial revolution, Smith felt, humans were valued as transferrable machines or tools, which could be used to make products for sale, or to make more tools or machinery. Consequently, money could be used to buy commodities like land, which could be worked by human labor for temporary wages, and supported mechanized tools to make further profits. For Smith, this cycle was virtuous and made the capitalist system a selfsupporting and quantifiable cycle of capital value. Subsequently, the capital value humans possessed was, the acquired and useful abilities of all the inhabitants or members of the society. The acquisition of such talents, by the maintenance of the acquirer during his (sic.) education, study, or apprenticeship, always costs a real expense, which is a capital fixed and realized, as it were, in his person. Those talents, as they make a part of his fortune, so do they likewise of that of the society to which he (sic.) belongs. The improved dexterity of a workman may be considered in the same light as a machine or instrument of trade which facilitates and abridges labor, and which, though it costs a certain expense, repays that expense with a profit.2 Smith’s belief that labor was a quantifiable, valuable commodity later inspired the writing of the German philosopher and economist Karl Marx in his book, Das Kapital (Capital), first published in 1867.3 Following the British and US abolition of legalized slavery in the nineteenth century, Marx observed the mistreatment of human labor and its value continued to be exploited by the capitalist system. This exploitation was the result of the misappropriation of the value of labor embedded in the commodity it

52  The study’s theoretical background reproduced, or as an abstract value of capital. Subsequently, writing from the standpoint of economic human labor, Marx felt that the industrial revolution in Britain & Ireland in particular fundamentally changed the value of human labor as capital. Prior to the industrial revolution, Marx wrote, human labor – which can be seen as akin to Smith’s value of human labor – had a different social and psychological value to physical capital. This quality was due to the intergenerational loss of skills that surfs and peasants previously had as craftspeople, despite their oppression by their feudal landlords – that is to say, these surfs and peasants had taught themselves values and passed on this value through learning and skills to their families. Marx argued that a consequence of the industrial revolution was that it changed the nature of human labor value psychologically. Subsequently, human labor value in the nineteenth century had subsequently been deprived of the relative freedom of thought that existed in the feudal economy through industrial and agricultural products. Along with the useful qualities of . . . products themselves, we put out of sight both the useful character of the various kinds of labor embodied in them, and the concrete forms of that labor; there is nothing left but what is common to them all; all are reduced to one and the same sort of labor, human labor in the abstract. Let us now consider the residue of each of these products; it consists of the same unsubstantial reality in each, a mere congelation of homogeneous human labor, of labor power expended without regard to the mode of its expenditure. All that these things now tell us is, that human labor power has been expended in their production, that human labor is embodied in them. When looked at as crystals of this social substance, common to them all, they are – Values.4 Importantly, Marx argued that by de-skilling the industrial workforce the industrial revolution substantially decreased the generational value of individual human labor. This de-skilling of the workforce, Marx continued, would lead to a more collective consciousness, and provoke a revolution that would change the nature of society’s self-awareness and self-valuation. Although partly inspired by Smith’s quantification of human behavior and thought, Capital represented a departure from Smith’s ideas on the capital value of human labor. Importantly, although Smith referred to human labor as a valuable moral activity, he had not seen human behavior as exploitable, or thought of humans in terms of individual consciousness. Marx did. Arguably, Smith also didn’t write about all labor as having equal value, or as the value of sentient beings in control of their minds, as to Smith labor was moral and not political. Contrariwise, Marx argued labor was highly political, and morals were not part of our motivation but used a tool of capitalist exploitation of value.

Inclusive capital and human value 53 Marx’s interpretation of capital was also importantly the first development of ideas on capital value through a social and economic endeavor, which affected the psychological value of a community. This was an important step because, although writers such as Samuel Howe, whom I wrote about in the last chapter, discussed community behaviors in this era, he believed that behavior was dependent on God-given morals. Marx was subsequently amongst the first philosophers to discuss human learning and behavior as having communitarian value without recourse to traditional moral judgments. Pierre Bourdieu on human capital as qualitative division For over a hundred years, Marx’s theory that human labor had essential quantifiable and economic value was dominant in the writing of Western social and economic philosophy. However, in 1979 the French social philosopher Pierre Bourdieu published Distinction, which featured the results of a different type of survey of human capital value in 1960s French culture.5 Instead of providing distinctive quantitative economic value between social classes, Bourdieu described two new forms of capital value: social capital, such as the value of knowledge and habits that affected people’s employment status, where they lived, and what their title was; and cultural capital, which was the value of knowledge and habits that affected people’s level of education, intellectual skills, and aesthetic tastes. Social and cultural capital values, Bourdieu felt, were acquired from birth through observational as well formal learning, and it was these values that provided social and cultural distinction. This meant that a person’s immediate environment, formal education and workplace played as much of a role in developing value as they did in forming industrial skills through learning to labor. Consequently, according to Bourdieu social class was not just restricted to accumulating material wealth, as Marx had argued. Instead, Bourdieu believed that behavior, religious and political beliefs, and other notional human characteristics, which simply exist as a state of mind, could quantify value as social status. Importantly, Bourdieu believed it was the value of social and cultural capitals that also provided distinctions of knowledge and habits by societies as a whole. Subsequently, it was also the value of these social and cultural capitals that divided access to education, institutional memberships, and accepted accents and language. What’s more, Bourdieu argued this division of capital affected social and cultural standing, and created a valued identity that attempted to back-up what was felt to be a social and cultural superiority. Like Marx, Bourdieu also suggested that social and cultural capitals created complex and subtle differences in value between communities, which informed different ways of thinking.

54  The study’s theoretical background However, despite their belief in communities with similar psychologies, there are significant differences between Marx and Bourdieu’s understanding of capital value. Most particularly, Bourdieu felt that, given the correct notional capital values, having little money could raise social status rather than diminish it. For example, Bourdieu wrote that people could have high social and cultural value but lack money if they were highly educated, led a Bohemian lifestyle or had avant-garde tastes in written or visual art. Furthermore, Bourdieu felt that, if people were relatively poor, but had a high level of education and “developed tastes,” it improved their social and cultural value. In these circumstances, wealth was thought to be “showy” and “affected.” There are criticisms of Bourdieu’s descriptions of social and cultural capitals. For example, critics observed that Bourdieu’s theory was full of generalizations about what was thought of as social status.6 Others argued that Bourdieu’s writing was culturally biased, and that his observations as to what constitutes a social and cultural capital was Franco-centric.7 Likewise, some critics felt that Bourdieu’s belief in a rigid social and cultural community that had no fluidity was naïve, and had little consideration of social evolution.8 These critics also observed that social mobility blurred the lines as to what a working-class or middle-class person was, and that Bourdieu overlooked the way working-class behaviors had cache and value. However, despite his critics Bourdieu’s theory of capital value provided a framework that allowed for analysis of social exclusion as a form of distinction, and the hidden values of social exclusion within communities. Moreover, many academics felt Bourdieu’s description of social and cultural capitals could be applied to loosely defined categories of socially excluded people, such as disabled people.9 This application allowed these categories of people to be imagined as a community that was bounded by a partial social exclusion. More importantly, and as a professional educator, Bourdieu explained how the values of knowledge and habits that could lead to social and cultural inclusion were taught.10 In this way, Bourdieu wrote that to develop social and cultural capitals was to learn what could also be valuable social and cultural behaviors and beliefs. For instance, Bourdieu argued that capital was primarily acquired through what he referred to as agencies, such as the family, peer groups, schools, universities, clubs or societies. Furthermore, social and cultural capitals fed their way into the human subconscious, making capital values a part of human identity. On this, Bourdieu described capital values as “habitus,” as they developed “principles which generate and organize practices.”11 Habitus and the development of capitals Bourdieu’s idea of social and cultural capital values were not just useful to the sociologists and social philosophers that subsequently used it to discuss social divisions by like groups. Bourdieu’s capitals also inspired a later generation of

Inclusive capital and human value 55 writers who examined people wrestling with their own identities and experiences that had helped shape these identities. In the context of distinctions in learning, for example, contemporary social and cultural psychologists argued that habitus can also be thought of as internalized traditions. For example, cultural capital has been linked to the development of knowledge of symbolic and ritualistic behavior that is a powerful part of belonging to a cultural community.12 Habitus has also been linked to disruptive behavior, the interruptions and denial of values that can lead to threats to our well-being and a sense of belonging in institutional spaces and places.13 What’s more, in my previous studies I observed that in being restricted to traditional assistive technologies, people born with a disability rarely had a chance to try mainstream technologies.14 More importantly, in many cases I found this different experience of the value of technology meant students lacked the capital to use or want mainstream computers, even if they had successful careers in computing. Unfortunately, lacking cultural capital value can also mean lacking knowledge of one’s own culture, including knowledge of prevailing technologies that can enhance, deepen or further learning. For example, knowledge of mainstream technology can allow students to develop the habitus of accessing information from online academic sources. Subsequently, this habitus can allow students with disabilities to develop different cultural capital value, such as knowledge from the contents of a book.15 Consequently, the process of developing capital value can lead to new and further knowledge and habits, and support a confident, educated, “successful” and included identity. This new identity preserves cultural capital through higher and further learning, reinforcing a valuable cultural identity, so that different forms of learning become a habit. As this process continues, mainstream learning, and the use of mainstream technologies becomes more habitualized and a significant part of an individual’s identity.16 It is through this cycle of habituation that the practice of knowing a field of study – such as a subject learnt at school or university, a trade or profession, or a genre or artistic specialism – is key to the development of the value of cultural practice. Bourdieu felt that it was through this development that people could distinguish those with certain qualities of capital values from those without. This evolution of practice he expressed through the following formula: [(habitus)(capital)] + field = practice17 Technical capital as a form of cultural capital value Many derivatives of Bourdieu’s writing on social and cultural capital values have been written to explain learning in the modern era. Perhaps the most relevant interpretation of the study I developed for this book is Sarita Yardi’s notion of the existence of technical capital.18

56  The study’s theoretical background Yardi defined technical capital as, “the availability of technical resources in a network, and the mobilization of these resources in ways that can positively impact access to information and upward mobility.”19 Consequently, Yardi problematized technical capital as a form of cultural capital, as it was principally associated with education and similar cultural practices – in Distinction, Bourdieu had himself mentioned the use of technology as part of valuable cultural development. In this study, technical capital value was also found to be a useful foundation for a notion of the value of inclusion, as it imagined the development of cultural capital as inclusion in cultural activities for a specific purpose. What’s more, and as I show later in this book, these cultural activities could be seen as explaining issues of more formal institutional education. What’s more, in my earlier studies of cultural heritage I also found that technical capital was associated with developing forms of value, such as capitals associated with employment or human relationships. Consequently, soft-skills could equate to a part of technical capital in the study of access to broader forms of cultural institutions. For instance, although ubiquitous for many sighted people, I discovered the ability to zoom in on digital images on the web enabled soft-skills that enabled access to other graphics. Furthermore, being able to interpret graphics could be seen as improving inclusion in other forms of visual education and training. This reasoning led me to ask, could the knowledge and skills used to value our basic human need, the need to feel included, be its own form of capital? To address this central question, I referred to this idea as inclusive capital, and defined it as the sense of inclusion we all need to feel. What follows is a description of a model of inclusive capital.

Inclusive capital Capital as a sense of inclusion The previous studies of human value have, I would argue, a common theme. This theme is, they value a sense of inclusion and a sense of loyalty to a category of people as part of our human condition to feel included and to feel part of a network – for instance, few value family, friends, social class, religion, ethnicity, or a sense of being part of a disabled or non-disabled community. Subsequently, these philosophies agree it is important, if not instinctive, for people to network and to learn through others. To put it another way: although there are better and worse ways of networking and learning, and we can be encouraged to use one way over another, because we don’t learn to network and learn, we simply network and learn. Networking and learning is therefore arguably part of our human, perhaps even mammalian, condition.

Inclusive capital and human value 57 Technical capital also shows us that it is important to get information and to use it to feel included, and it is a large part of our human history to develop and use technology; just as it can also be said to be part of our history to seek out our heritage and the heritage of others. It could also be said that it is part of our human character to seek out inclusion as a value to feel our sense of inclusion; and it can be said that throughout history, people have fought wars, crossed continents hidden or fled from oppressors to form new communities, to feel secure and to feel a sense of inclusion. Consequently, to develop inclusive capital can also then be central to our human history. Later in this book, I argue that acquiring inclusive capital is especially important if you are a disabled or an older person. This difficulty is caused because people with disabilities are more likely to find it harder to access the first steps of inclusive capital. This leads to a lessening of their sense of inclusion in mainstream society, and to a growing sense of social exclusion and isolation. For instance, disabled people often find it harder to access technologies they can interact with, or to access the environments of cultural institutions. They are less likely to have their needs understood, or be thought of as needing access to the learning of non-disabled people. They are often thought to want separate cultural institutions, such as schools or classes, or separate museum entrances or exhibitions in museums. They are consequently more likely to feel a sense of passive exclusion. The physical nature of some disabilities or infirmities caused by old age can also lessen our access to the cycle of acquiring inclusive capital. For instance, acquiring deafness and blindness may make it harder to join group discussions that were once normal and are an essential part of networking, for gaining information or using technology. Physical disabilities may also make it harder to find transport or access cultural institutions or physical networks. Late acquired learning disabilities can similarly be thought to restrict access to mainstream learning, and the spaces and places of cultural institutions that people once enjoyed. Therefore, it is another task of this book to develop an argument that cultural institutions and teachers need to recognize the need for inclusive capital, to foster a sense of inclusion. Cultural institutions and teachers do not just need to understand this sense of inclusion intellectually and academically, they need to feel empathy with this sense of inclusion. Practically, cultural institutions and teachers must also understand and study ways in which they can adapt their spaces and places – both their physical and virtual environments. These institutions and teachers also need to adapt their own behavior to develop habits and practices that recognizes a sense of inclusion in others. To develop this argument and to understand the evidence for cultural inclusion in the cases in the later chapters, I start by developing the academic

58  The study’s theoretical background background of inclusive capital from human values. The process of developing this background will structure the model of inclusive capital as a framework of different stages of development, which can be used in the later chapters. Five stages of developing inclusive capital As with other forms of capital, inclusive capital is not born in us, it is acquired. In common with all previous descriptions of capital, it can be said that a single cycle of acquiring inclusive capital is in five stages. The first stage in this cycle is connecting and bonding with a network of people – that is to say, to acquire bonds from our human necessity to bond. These groups are largely seen as a family or a group of friends, classmates or workmates or, as Yardi observed, connecting and bonding with a group developed through social media. Without connecting and bonding to this social or cultural network, there is no sense of inclusion. Consequently, our sense of inclusion is premised on a social and cultural process of feeling valued in these bonds and connections. The second stage in this cycle is learning inclusive capital through our networks – that is to say, we use our human condition to learn to develop and acquire human capital. Consequently, learning inclusive capital consists of acquiring habits, knowledge, and practices that can lead to a sense of inclusion. In common with the writing of Marx, part of this learning of inclusive capital is also seeing ourselves as being as equally included as others are in order to humanize our skills. However, unlike Marx’s understanding of morals, this is also where we develop a further sense, this is the moral sense of justice, which can also be described as a form of moral knowledge. In this respect, justice is also connected to a process of bonding, connecting and feeling included, and being included could be said to be an important part of our moral understanding. The third stage in this cycle is collecting information that points to or later leads to knowledge. This collection of information can include finding out about our surroundings, making judgments about their worth or planning to travel within our surroundings. For example, this information could be directions from maps. According to Yardi and Bourdieu, this third stage in the cycle can also be acquired through the use of technology, or gaining information to update inclusive capital. In the modern era, this third stage can also mean accessing digital networks or learning, and access to these networks and this learning can help develop a sense of inclusion. Information is consequently a vital part of planning and designing inclusive capital, and its subsequent habits and practice. It can be described as the raw material or the atomic level of inclusive capital. The fourth stage in this cycle is physical or virtual access to spaces and places, such as visiting or attending cultural institutions or reading about

Inclusive capital and human value 59 their collections and history – these institutions can include schools, parks, universities, museums, cinemas, theaters, shops, workplaces, or as Yardi argues surfing websites. The fifth stage in this cycle is a form of capital that weaves its way through all other forms of capital, and subsequently must be seen as a thread within rather than separate to other capitals. This capital is physical and virtual mobility, and is a capital that allows a person to navigate around their spaces and places, networks, and sources of information and learning – this can include surfing the Web for information, moving to make your way around an institutional environment or between environments, or even making contact with family through technologies such as telephones. Moreover, lacking mobility can lead to exclusion; to being unable to attend the institution as a place, to being unable to find information, or to being unable to move between networks of friends and family. As these previous philosophies observe, although our networks do not have to be in a single place, we need an area – either physical or virtual – where we can access them. This access is important for connecting and bonding within our networks, or communicating with them. We also need access to cultural environments, or cultural objects or performances, that connect and bond us to our networks, or allow us to see our networks in relation to others’ networks. These five stages are represented in Figure 4.1 below. So, how can these four stages of developing inclusive capital be implemented in cultural institutions? In this book, it is also important to define how cultural institutions can support the development of inclusive capital and access to their information, spaces and places. This definition is designed to help the reader understand the nature of the evidence I discuss in the following chapters. This process now follows. What are inclusive cultural institutions? In this study, inclusive cultural institutions are not just institutions in the traditional sense of the word. For example, when we normally talk about institutions, particularly cultural institutions, we usually imagine a museum, monument or gallery; perhaps we also imagine a church, a synagogue, a mosque or a temple, or perhaps a school or university. However, in this book I am going beyond this mental image. The inclusive cultural institutions I write about in this book have two functions: the first function is to support people, and to provide some form of inclusion; the second function is to provide access to culture and learning, this culture being a part of someone’s heritage. Cultural institutions can be said to have three basic elements: they must have some form of human creator; they must have a form of administration; they must have a founding philosophy or reason, even if it has become

60  The study’s theoretical background

Mobility Spaces and Places Informaon

Learning

Bonding

Figure 4.1  The development of inclusive capital and a sense of inclusion

distorted or invisible with time, to justify their existence. To make institutions cultural, they must also provide a sense of belonging, and often they must also be public and offer a sense of well-being and fascination to outsiders too. This casts my net a little wider than simply museums, religious buildings, and schools. For example, the town I live in can be said to be an inclusive cultural institution in many respects. This town in rural Wiltshire, in the UK, and it is a place and space that attracts and is made open to tourists, Christian pilgrims, and locals from the town alike. From the streets, you can see beautiful houses, an Anglo-Saxon church, a stone bridge with a chapel, a medieval tithe barn, a pilgrim route, a canal and tow path, an ancient river and ford, and rows of shops and tea houses. We also have public farmland donated over a hundred years ago to the

Inclusive capital and human value 61 people of the town, with paths, coppices, fields and nature areas, which, like the town, is administered by the town council. In common with the first stage of developing inclusive capital through networks, locals, tourists, and pilgrims climb the hills in groups, and we have organized tours and a walking club. The pilgrims also visit the chapels and pray in the churches where they meet fellow pilgrims. Tourists and locals can come together in buses, and the council provides areas where these buses can park. My town also has cafes, pubs, and restaurants where all people can mingle, talk, and network. Locals also network in town clubs, societies, and churches. Families are also provided for through family and children’s clubs, schools and nurseries, and a local café has a play area upstairs where children and parents meet over a coffee and their children play. In common with the second stage of developing inclusive capital, locals and people from further afield can also feel a sense of belonging through learning. These communities learn something about the architecture and history of the town when they visit, through leaflets from the tourist office, from books and from the town website. The pilgrims who visit the town gain something from their faith through information from the churches, websites, and books about the tourist routes. Maps also provide information about accessing the route to different sites. Tourists also get information and develop knowledge from the town through the signposts and the plaques describing the area. They can also read books about the town, and understand a place that is different from their usual network or discover a history of their network they rarely get a chance to see. In common with the third stage of gaining inclusive capital, my town’s website gives information about the town’s history and geography, and how to get to it, stay and leave it. There are also many individual websites for shops, hotels, our music center and other smaller spaces and places that make up the town. There are also many town Facebook and Twitter groups, and images on town Instagram accounts. Our town library has computers that can be booked and used by the public. There are also public Wi-Fi and telephone networks for wireless technologies, and plugs available in pubs, cafes, and libraries where people can charge their laptops, tablets, and telephones. The council, through its community centers and libraries, also provide computing courses that develop skills, and allow people to do everyday tasks, such as shopping on the Web. In common with the fourth stage of developing inclusive capital, my local streets are administered by the town and county council, who try to be sensitive to and include our visitors. The councils put up signposts, pave and tar the streets, and even run a small tourist office in the town center, with maps and brochures to educate its customers. Our local councils also light and clean our streets, our river, our canal and our tow paths to make them feel safe; they cut back foliage when it gets

62  The study’s theoretical background out of hand; and they protect the local ducks and swans. The council also thinks of transport into and out of our town, and paints lines and provides parking for cars, shelters for buses and paths to our train station. All this activity makes our town more accessible, and most visitors find visiting our town a good experience. Consequently, tourists get to see a type of stone in the buildings that perhaps they wouldn’t see where they live. They see art that is different and interesting. Their children get to play in the river at the ford. So, many of those who visit my town get something from their visits, and feel a sense of inclusion from their visit to the space and place. As the art historian Ernst Gombrich said of museums, my town’s aim can be said to give, “profit and delight”20 to those who visit it. Similarly, inclusive cultural institutions don’t have to have, or just have, a physical space for the public to visit. They also don’t have to be local in the modern age of information and technology. Cultural institutions can also be a state of mind or a theoretical space, with a physical though not geographical “center” or “centers,” and cultural objects scattered throughout other spaces. The physical impression of the institution in that space and place also gives visitors a sense of place within their imaginative space and imaginative bonds, what I will call an imagined institution. Three very different examples of these imagined institutions illustrate their character and structure as a place and space. The first example of an imagined institution is a digital social network. What we call digital communities have arguably changed the way we think and write about culture in our modern era. They are so young, in effect, as they only really started to exist around forty years after Bourdieu conducted his survey of French culture. Subsequently, we can suggest that Bourdieu’s description of his original survey of French cultural capital would look very different nowadays. For example, as a member of Facebook and LinkedIn, I am socially connected with people worldwide, many of whom I have never met in person or am unlikely to ever meet. This makes the notion of cultural capital different to the local or national cultures that Bourdieu described, much as Bourdieu redefined Marx and Smith’s ideas when he wrote. I am also a member of societies, clubs, and associations that only exist on the Web, such as arts discussion groups, philosophy societies, and technology discussion “rooms.” I have no or little physical image of the people I meet or have discussions with in these groups, associations or societies. As a technologist, I know there are servers that hold, control, and monitor my discussions and networking – maybe these servers are in California, perhaps in India. However, there is no physical space or place of these conversations, especially as my telephone and tablet are physically mobile. During my online discussions, I also have no mental image of my discussants’ clothes, or any knowledge of their social class. What’s more, many of my discussants write in English as a second language, and I have no idea

Inclusive capital and human value 63 whether their accent is of one social class or another. This changes our idea of distinction of social class, ethnicity, level of education or artistic stature. The second example of an imagined institution is national affiliation. For example, this type of imagined institution was illustrated powerfully on Sunday 23rd April 2017, when the French presidential election was being reported by BBC news. As I watched the report from Paris at home, France was said by reporters to be in a state of “cultural crisis.” Media pundits and political scientists suggested that the French didn’t understand their own identity anymore. Given the problems in the economy and mass immigration, it was argued, who knows what a French person is supposed to be, or what they are supposed to think of themselves. Supposedly, this crisis was causing an upheaval in the political process, both by native French people, and those who had recently moved to France. On that night in Paris, the media reported the old guard had been rejected with embarrassing shares of the vote. The two political parties who had regularly swapped power for decades, had been usurped in a straight fight between what was described as a hard-right candidate and a “new” centrist candidate. As if this cultural shift wasn’t enough, it was reported that the hard-right candidate was a woman and the centrist was under forty. In the history of France, this was unheard of – as a matter of fact, the centrist was a former cabinet member of the then ruling party; and the woman candidate was the daughter of the previous leader of her party, and her father had been similarly successful a decade ago. And yet, this was still recognizably France. Membership of an imagined national institution is far more complex and robust than these reporters gave French nationals credit for. This form of imagined institutional identity is made up of many, often disparate, elements. Most particularly, French people don’t need to be resident in their homeland to be members of their imagined institution, and members of other nationalities often live easily in France. French nationals don’t even need to have two French parents nowadays, or even to speak French. It is true that some of the characteristics of our imagined institutions can be broadly defined according to our nationality. However, these elements of our national identities, which are compulsory in the modern Western world, are more likely to be imposed on us rather than are chosen or born into us. Subsequently, imagined institutional membership can’t be imagined according to single issues or single concepts, which are often external to people’s personalities. Most importantly, as nationals and members of similarly imagined institutions, we are not clones of our neighbors, or those whose external characteristics we are said to possess. Each nationality has its own unique identity that imposes itself onto our identities. The third example of an imagined institution is a sports team or club. As a type of institution, a sports team or club engenders a strong feeling of loyalty and belonging, which itself forms a sense of inclusion. For

64  The study’s theoretical background instance, I chose to be a Liverpool soccer fan as a child. As a fan, my social rules, engagement and language of soccer are now the same as a Manchester United fan, but yet I’m insulted to be compared to a Manchester United fan – and I’d imagine Manchester United fans feel the same. Liverpool, more than any other sports team provide me with a distinct culture, and as a younger single man I was also a proud member of its fan club. This, I would argue, makes me culturally a Liverpool FC fan. I have a Liverpool shirt, bag, mug, badges, old tickets and programs from matches, and the knowledge of current and past teams tucked in my memory. Steven Gerard, Kenny Dalglish, Kevin Keegan, Bill Shankly, Bob Paisley, and now Jurgen Klopp – to mention only a few – are my sporting icons. They represent the state of mind and the modes of play that are Liverpool FC. Another loyalty is my baseball team, the New York Mets, honed by my short time living in New York with my family. In 2011, we lived in Queens, New York, and the Mets’ stadium in Flushing Meadows was near our apartment, and so this became our team. Consequently, my family and I supposedly had the wrong nationalities for our household – British and Italian – but the right baseball team. Being Mets fans, we also resented the Yankees, the larger baseball team based in the Bronx. What’s more, like Manchester City fans back in England, my family and I shared a homely and common dislike of the Yankees with Boston Red Sox fans. Even years after leaving New York City, I still feel this sense of loyalty to the Mets, wear my Mets cap and feel a bond when I see another Mets cap wearer. I even watch the team on television when I’m back in the US. I don’t live near the center of the institution, or even on the same continent, but I still feel included in the institution.

Discussion Philosophies of human value, an imagined form of knowledge, habits, and behavior, has evolved over the two and a half centuries since Smith wrote The Wealth of Nations. Prior to the twentieth century, these philosophies moved from the ownership of human bodies to the control of human labor. This vision of value as being more mind than the body led Marx to call for social justice for human value, and its ownership to be passed to those who created it. Subsequently, value became a part of human well-being and a sense of feeling valued, and having your humanity appropriately valued. However, like Smith, this social justice was based on an understanding that human behavior still had a financial capital value that should be bought and sold on through the market. In the modern era, this philosophical link between financial value and human labor has been challenged. With this challenge, value has also come to be seen as a non-economic commodity, or a non-economic capital, and

Inclusive capital and human value 65 viewed more as a psychological and social difference learnt through the codes we are raised with. These codes can include habits we observe around us daily, the formal and informal knowledge we are taught by friends, family, and education, or the street-smarts we pick up as young people. What’s more, these codes can’t be easily bought and sold, or bought at all. They have a very different sense of value as an artisanal commodity, much as Marx argued production existed prior to the industrial revolution. This new image of value allows us to see how capital can be a type of noneconomic commodity, a non-academic knowledge – including knowledge about how to use our academic knowledge – or an informal skill that we can apply to our daily lives. Subsequently, philosophers such as Bourdieu and Yardi’s ideas provide a further use for notions of value: the notion that capital can also be our motivation, our morals, our ethics, our well-being, and our dignity; and that inclusion, the sense of inclusion I wrote about earlier in this chapter, is itself a capital, and the means of getting it can also be a capital with a very real human value. By developing an image of capital as these other types of non-economic, psychological, and cultural commodities do, we immediately broaden the ways we can develop inclusion. Inclusion is no longer merely the opposite of exclusion, and particularly the opposite of social exclusion, it is also a human value. Seeing inclusion as a form of capital allows us to go about developing it as an active process, one in which the person with a disability controls its development according to their needs. It also allows people from different backgrounds to develop their own capitals according to their needs, their backgrounds and their own cultural heritage. Seeing inclusion as a capital also allows us to develop institutional strategies targeted at not just overcoming social injustice and singling out institutions who do not provide inclusive spaces and places. It also allows us to emphasize inclusion as a practical means of education that needs different practical learning strategies, and as a process of partnership with people deserving access. In this respect, inclusive capital is a particularly powerful tool for people with disabilities in inclusive cultural institutions. Perhaps of all cultural communities, people with disabilities need more practical support to access and feel a sense of inclusion. This is largely because people with disabilities are also more vulnerable to changing identities, or having to develop a new identity when developing a disability or an impairment. This process causes tensions in our sense of inclusion. So, how can inclusive capital become useful to people with disabilities? Moreover, how does inclusive capital affect disabled people’s identities as they age, and develop different ways of accessing cultural heritage? In the next section, I describe the development of inclusive capital through cases of learning about cultural heritage according to the different identities

66  The study’s theoretical background of disability I described in Chapter 2. I start this description with cases of developing inclusive capital as school students in Chapters 5 and 6. These students were either born with disabilities or developed disabilities at an early age. Chapters 7 and 8 describe the transition of inclusive capital whilst having a disability in old age. Chapter 5 looks at ageing as a person who was born with a disability or who developed a disability at a young age and whose disabilities have become stronger in old age. Chapter 8 describes cases of people who have developed their disabilities in later life, and are adjusting their inclusive capital to maintain their well-being, and adjust their identities.

Notes 1 Smith (2005) 2 Smith (2005, p. 282) 3 Marx (1986) 4 Marx (1986, p. 28) 5 Bourdieu (2010) 6 Lamont (1992) 7 Fowler (1999) 8 Chaney (1996) and Alexander (1995) 9 See, for example, Riddell and Watson (2010) 10 Bourdieu (1990) 11 Bourdieu (1990, p. 53) 12 Lizardo (2004) and Swartz (2002) 13 See, for example, Hayhoe (2012) and Swartz (2002) 14 Hayhoe (2012b) 15 See, for example, Hayhoe, Roger, Eldritch-Boersen, and Kelland (2015) 16 Hayhoe (2015) 17 Bourdieu (2010, p. 95) 18 Yardi (2009, 2010) 19 Yardi (2010, p. 1). 20 Gombrich (1977, p. 450)

References Alexander, J. C. (1995). Fin de siècle social theory: Relativism, reduction and the problem of reason. New York: Verso. Bourdieu, P. (1990). The logic of practice. Stanford, CA: Stanford University Press. Bourdieu, P. (2010). Distinction. Abingdon, Oxfordshire: Routledge Classics. Chaney, D. (1996). Lifestyles. Abingdon, Oxfordshire: Routledge. Fowler, B. (1999). The sociology of habit: The perspective of Pierre Bourdieu. Variant, 2(8), 1–4. Gombrich, E. H. (1977). The museum: Past, present and future. Critical Inquiry, 3(3), 449–470. Hayhoe, S. (2012a). Grounded theory and disability studies: Researching legacies of blindness. Amherst, NY: Cambria Press. Hayhoe, S. (2012b). Using an iPad with a blind student: A case study at Sharjah Women’s College. In S. Dowling, C. Gunn, & H. Donaghue (Eds.), eLearning in action (Vol. 1): Opening up learning. Abu Dhabi: HCT Press.

Inclusive capital and human value 67 Hayhoe, S. (2015). Utilising mobile technologies for students with disabilities. In A. Robertson & R. Jones Parry (Eds.), Commonwealth education partnerships – 2015 (Vol. 16). Cambridge: Commonwealth Secretariat & Nexus Strategic Partnerships. Hayhoe, S., Roger, K., Eldritch-Boersen, S., & Kelland, L. (2015). Developing inclusive technical capital beyond the disabled students’ allowance in England. Social Inclusion, 3(6), 29–41. Lamont, M. (1992). Money, morals and manners: The culture of French and American upper-middle class. Chicago, IL: Chicago University Press. Lizardo, O. (2004). The cognitive origins of Bourdieu’s habitus. Journal for the Theory of Social Behavior, 34(4), 375–401. Marx, K. (1986). Capital – a critique of political economy: The process of production of capital (Vol. 1). Moscow, Russia: Progress. Riddell, S., & Watson, N. (2010). Disability, culture and identity. London: Pearson. Smith, A. (2005). Wealth of nations. Chicago, IL: University of Chicago Press. Swartz, D. L. (2002). The sociology of habit: The perspective of Pierre Bourdieu. The Occupational Therapy Journal of Research, 22, 615–695. Yardi, S. (2009). Social learning and technical capital on the social web. ACM Crossroads, 16(2), 9–11. Yardi, S. (2010, February 11–12). A theory of technical capital. Paper delivered to the TMSP Workshop, Georgia Institute of Technology, Georgia, US.

Part II

Cases of ageing and disability in cultural heritage

5 Younger children and cultural heritage

Introduction As I wrote previously, the experiences we have in our earliest years are often the most influential in shaping our identities. In these early years, we develop bonds with our peers and family, we learn about objects around us, we get to know where information is, and we discover the spaces and places we live in.1 Culturally, the institutions that provide our most memorable early experiences are ones that allow us to bond with our friends, our schools, and most particularly our families. This provision is especially important for children with disabilities, who are more likely to be dependent on institutions – certainly more than most children without disabilities. For instance, in previous research I found children with disabilities were more likely than not to be dependent on families for their mobility, or for being aware of or handling objects. Similarly, I found boarders in special schools were especially dependent on their schools for their welfare as well as for their education.2 In his book, Asylums, the social anthropologist Erving Goffman made similar observations in traditional special schools and other boarding institutions, such as hospitals and prisons.3 Goffman referred to these types of institutions as total institutions, as they seemed to take over almost every aspect of their residents’ lives. Consequently, it’s important to start studying case studies of inclusive capital by looking at modern childhood experiences of cultural development in institutions. In this chapter, I start this process by describing the experiences of three early-teenage children learning about the arts and cultural heritage in a special education (special ed.) class – ethically, I chose this as my youngest age group, as I didn’t feel it was right to study primary children, who couldn’t reasonably consent to the research process. The study for this chapter was in Fall, 2011, in the special ed. class of a teacher I named Mrs. Waterford, in a school I called Red Leaf School. The class had three children who participated in the study, two boys and a

72  Ageing and disability in cultural heritage girl, whom I called David, Sally, and Ben. These three children were aged between twelve and thirteen years. Before the study, I informed all three children about the nature of my research. Red Leaf School also informed the children’s parents about my study, with the caveat that if they didn’t want to participate they could withdraw. None did. Red Leaf School and Paisleyton Red Leaf School has a charitable foundation dating back to the nineteenth century, with a long running history of supporting children with disabilities pedagogically and pastorally. The school’s children are a mixture of dayattenders and boarders, and its academic staff have considerable expertise in supporting teachers of children with disabilities in other schools, too. Red Leaf School takes children from four years of age, where children enter its kindergarten, to eighteen plus years, where children and young adults are prepared for college and work. However, many children enter the school at different periods of their school career, when they are identified as having additional needs that other mainstream schools can’t provide. Red Leaf School’s curriculum, like many mainstream schools, is largely academic with some vocational opportunities included for older children. Although, unlike most mainstream schools, Red Leaf School also has facilities for supporting children with specific disabilities’ communication, sensory-motor, mobility, and learning needs. Geographically, Red Leaf School has a large, accessible concrete-and-steel and brick-built campus, with facilities such as soft play areas, which are surrounded by wide lawns and wooded areas. The different levels of schooling have their own sites on campus, and support services often have their own buildings, too. The main building on campus, the largest of the original buildings, also houses the assembly hall, the school’s main administration and a school museum, with a range of exhibits. Red Leaf School’s campus is in a town I called Paisleyton. Paisleyton is a mid-sized town in central-eastern Massachusetts, and is home to commuters to nearby cities, and to numerous businesses and institutions around its borders. Geographically, Paisleyton is largely comprised of neat Victorian and early twentieth century clapboard houses, based around a town center with local shops, surgeries, diners, and bars. The town is split by a wide river, which is home to birds and other wildlife on its wide, grassy and tree-lined banks. For transport, the town has busy main roads spoking from its center, which slope down to the town’s public center, its river, and its narrow, traditional-looking road bridge. These main roads also lead up to surrounding towns and the nearby city, and connect with larger highways to the rest of the US.

Younger children and cultural heritage 73 Although it has no railroad track or station, Paisleyton is also on several mainline bus routes to surrounding towns and cities. Paisleyton also has Greyhound stops for buses to the rest of the state and the country. Despite its busy roads, the small streets that lead from Paisleyton’s town center are quiet and the air is clean. The houses on these streets are largely detached and have generous yards on all sides. Many of the local streets also have parks, with sports pitches for team practice and little league games. As with many other mid-sized towns in the US, several of the roads leading into Paisleyton center are lined with small shops and restaurants. These roads provide a vibrant local community life, especially in the evening. On its borders, Paisleyton also has large superstores and marts that are fed by its arterial roads, and which are livelier by day. One of the roads to the west of Paisleyton is also home to shops and community centers of a Near-East Asian community, most of whose diaspora moved to the US some time ago. It is on this wide road, and near this community, that Red Leaf School has its campus. Ben and Sally were resident in the school at the time of my visit, whereas David lived at home and traveled to the school every day on an accessible school bus. This transportation arrangement was not guided by the children’s disabilities, but on how far they lived from Red Leaf School. On the days I visited the school, all three children were working on an art project, a subject that was popular with all year groups. What now follows in this chapter is a description of these children’s cultural development of inclusive capital through its four stages.

Sally, Ben, and David in Mrs. Waterford’s class Bonding – family, friends, and schools Like my previous observations of older people who attended special schools as children, David, Sally, and Ben’s early memories of cultural heritage was mostly with family and friends. This bonding, often through shared cultural experiences, led to an emphasis on learning embryonic habits and soft-skills from their families, and to sharing these habits and skills with friends. The children’s shared experiences were the strongest and most abiding memories of their early museum visits, especially the visits they had outside of, or before attending, special ed. Although I show later in this chapter that Ben, Sally and David did not always remember important historical information from museums, they always remembered the family they went with. What’s more, Ben, Sally and David could often recall the activities they took part in with members of their family in more intimate detail than they could their earliest school visits to museums. For instance, in a conversation with David, he told me he visited several science museums and centers in Massachusetts six years before, something

74  Ageing and disability in cultural heritage he seemed to enjoy a great deal. Of all these museum experiences, though, the most vivid memories were of a giant staircase keyboard he could walk up, and of seeing many of his extended family during this visit. DAVID:  One

time, back in, well actually it was February 2005, I went to the science museum [in Boston]. I haven’t done that for years. SIMON:  And what did you enjoy about the science museum? DAVID:  Well, they had these musical stairs, which were cool. SIMON:  What was musical about them. Did you walk up them and they played music? DAVID:  Yeah. Basically. When you went up, they played, they entertained you . . . I don’t really remember it too, too much, because that was back in 2005. SIMON:  Right, but what was the most memorable thing apart from the musical stairs? DAVID:  Other than the musical steps, I remember meeting a bunch of my family there. Similarly, during our conversation Ben also made a special point of recalling his early museum experiences with his family, whom he saw regularly despite being a boarder at school. The excerpt below is the first of these recollections, in which Ben asked if he could speak first, and during our conversation emphasized making the most of his time with his extended family. SIMON [TO BEN]:  Go ahead, young man. BEN:  My name is Ben, and I want to tell you about the museums I go to with

my family. I also go to ones with my school, but I want to tell you about the ones I’ve been too with my family. SIMON:  Go ahead, please, go ahead Ben . . . Which museums have you been to with your family? You’re on! BEN:  I’ve been to a variety of museums, but what I really wanted to tell you about is when I was little, and I went to the Children’s Museum with my grandma . . . I think I went to the one in Mashpee [Cape Cod Children’s Museum], but I was little, I was really little. Similarly, during our conversation I discovered Ben and David were close friends and, despite David’s ability to go home after school, the boys often spoke on the phone at night. This relationship between the boys was amplified by their physical difficulty in going out after school, and their need to bond and form relationships in their family or immediate environment. Ben and David were also familiar with each other’s families, and they empathized with each other about family issues that were important to both of them, such as siblings they found irritating. For instance, Ben was familiar with David’s difficulty with his younger sister and their sibling rivalry,

Younger children and cultural heritage 75 and broke off from our topic of conversation to discuss it on more than one occasion. BEN [ON DAVID]:  Because

his four-year-old sister, Tabitha, is like wicked mean to him. DAVID:  Oh, God, she like bangs on the bedroom door when I’m on the phone. BEN:  Yeah, like when he’s on the phone with me he’s like, “Tabitha, get outa my room, I’m on the phone!” BANG, BANG, BANG, and I’m like, “Come on, put your phone on speaker,” and I turn the fan on in my [dorm room] . . . Do you know what I don’t enjoy a lot? When my brother comes to play with me. [Ben imitates his brother’s voice in a sarcastic tone] “Play with Lego with me, play with Lego with me.” I just ignore him. Even the children’s more recent experiences with their families provoked their most passionate, meaningful and enjoyable memories of cultural visits. For instance, in conversations I had with the boarders, Sally and Ben, about their recent stays at home, their trips with families during these stays were especially memorable. For instance, Sally talked about a recent trip to the Empire State Building, New York City, with her mom. During this visit, she couldn’t remember the history or architecture of the building, but recalled the way her mom rung ahead to cut in line beforehand, and what her mom told her about the top. For Sally, the priority of her visit was the shared experience of getting into the elevator before others and the weather. SIMON [TO SALLY]:  So,

you went to New York, and you went up the Empire State Building? SALLY:  Yeah, you have to wait in lines. But my mom called, and she said is there a way that we can see the Empire State Building, and seeing as I was [disabled], we didn’t have to wait in long lines . . . We got to cut all the lines, and it was really fun. SIMON:  So, you enjoyed that experience? SALLY:  Yeah, we went up in the elevator, the 86th [floor]. DAVID:  Oh, I’ve always wanted to do that, to go from floor one to the 86th floor. SIMON:  And, what did you enjoy about being on top? SALLY:  Well, it was fun. You could, like, look out into the city. Like, you could actually see the whole entire city of New York . . . My mom said that when it’s hot there are lots of people there, but [when I went] it was rainy and cold, and there were still a lot of people there. Learning – play and objects After experiences of friends and family, Sally, Ben and David’s next most memorable cultural experiences were of cultural learning through objects

76  Ageing and disability in cultural heritage in interactive museums and parks. All three children’s memories were both associated with the children’s families and school visits, and during our conversations they seemed to remember even the earliest visits made years before. For instance, Ben was keen to tell me again about his early visits to the children’s museums with his family, especially with his grandma, and his interaction with the toys there. He particularly remembered the themes of object collections, such as whether they were based on the home environment or pirates. He now felt that his early experiences of these museums were childish, but he still remembered them in some detail, particularly when they were connected to fond times with his grandma. SIMON:  And what was in the Children’s Museum? BEN:  Well, there was little kids stuff, so there was like

a play kitchen, a play home, there was a climbing thing. There was like a pirate boat, where you could climb on. SIMON:  Interesting. Were there old toys and things? BEN:  Oh, if you wanted to go in the baby room you could. There were tons of toys in the baby room. SIMON:  Right, and what do you remember particularly about that, just the old pirate ships and things like that? BEN:  Hmmm, I remember, I remember a lot of the stuff, like I could climb on, because I did love to climb when I was a baby. And, umm, grandma used to take me to the home [in the museum] and I used to ring the doorbell, “ding!” Then she took me in there. She made me pretend to be asleep on the little bed they had, and then she made me feed the baby, which is a doll, and then it was old. It was fun when I was a baby. Another aspect of learning in museums that Ben, Sally and David enjoyed and regularly brought up in conversation was the making projects they were involved in at museums. Having these activities appeared to give all three children a sense of ownership of their visit, and allowed them a tangible memory of the objects they encountered. For instance, during one conversation all three children told me that the favorite part of their numerous visits to the Boston Museum of Fine Art (MFA) was molding in clay the objects they’d seen. This exercise wasn’t highly structured – that’s to say, Ben, David and Sally weren’t told they had to make a piece from the museum – the piece they made just had to be a memory of an experience or object from their visit. BEN:  Well,

at the [Boston Museum of Fine Art] I enjoy the making part . . . My favorite was the clay we did at the end. SIMON:  Ahhh . . . so you did the clay [work] in the museum? SALLY:  We did clay, we did . . . SIMON:  And, what did you make with the clay?

Younger children and cultural heritage 77 SALLY:  Well, I made, ummm . . . for the music one, I made a tune. SIMON:  A tune? SALLY:  Yeah. And then I think for the room one, I made a snake . . . DAVID:  I made a snake, [too]! SIMON:  And that was from different periods you were taught about. SALLY:  Yeah. SIMON:  And, boys, what did you make for your clay pieces? BEN:   . . . I think for my relief statue, I made, like, an animal. SIMON:  An animal? BEN:  Like, an animal I saw [in the museum]. Another one I made, I don’t

really know what I made . . . but it was acceptable, because it was something from the MFA. I think one time, I tried to make, like, the flat sculpture of a lion . . . and then we got to make these building pieces out of cardboard. SIMON:  Right, and why were you making building pieces out of cardboard? BEN:  Cos, because on our last visit, we were supposed to look at the architecture of the furniture in the building. These making exercises appeared to have a significant impact on Sally, David and Ben’s recognition of objects they saw in the museum. During our conversations, when they came to explain objects they’d made, the children recalled more details about the objects they’d seen than when I asked them to describe visits without making exercises. Consequently, it appeared the soft-skill of reproduction helped all three children reinforce their memories of objects, and invited them to examine the pieces in detail in their minds. For example, during one visit to the MFA, Ben, Sally and David had visited complete Roman and Ancient Egyptian exhibits. Unlike other exhibits I’d asked them to describe before, Sally, David and Ben became more animated and able to describe several details of sculptures they’d reproduced in clay. However, when it came to describe the details of the pieces’ historical eras, the children couldn’t pinpoint an era or its significance. SIMON:  So,

you were making things afterwards? So, does that help you remember things? SALLY:  I imitated some pieces I touched, if that’s what you mean. It felt like a statue. It’s, like, a snake on the person. SIMON:  Right, so a person with a snake with it? SALLY:  Yeah . . . SIMON:  So, all the stuff you saw, was it all Roman . . . or Egyptian? SALLY:  Yeah, Roman and Egyptian. Well there were some . . . There was Roman and Egyptian. So, we felt, like, a statue with a snake on a person. SIMON:  Right, so you felt a statue with a snake on it? . . . And was all the stuff you saw Roman and Egyptian? SALLY:  Yeah, Roman and Egyptian.

78  Ageing and disability in cultural heritage BEN:  There

was one example where we saw this statue of a family, and it was like all their noses were broken off? SIMON:  Interesting. And you were still allowed to [get close to] the statue? BEN:  We were allowed. It was funny. It was kind of funny. Like the real people, they still had noses. DAVID:  Yeah, but they were dead. BEN:  I know, the statue did not have noses because they were stone statues, and the stone can break . . . I think it’s funny . . . looking at statues with broken parts. It wasn’t just making exercises that made the children’s visits memorable during our conversations. It was also the quirks in each student’s personality, their hobbies and the topics that sparked their imagination. Sally, Ben and David were interested in the same things other children were, like dead animals and gooey textures, and so when they got to experience them in museums it brought their subject to life. For example, although the three children didn’t have a great recollection of the science behind the exhibits, Sally, David and Ben liked the dead animals that were kept in the school’s museum. It wasn’t just the fact that these animals were dead that fascinated them, it was the way they could borrow these objects for class. The way these objects appeared in their class was something the MFA couldn’t reproduce. DAVID:  I just like technology. MRS. WATERFORD:  . . . We can

also order things from the school museum, [such as the museum’s bear]. BEN:  Yeah, she got a model of a brain once from there. SALLY:  Ohhh, it was sooo cool! DAVID:  And it was like rubber. It was like rubber stuff. SALLY:  It felt so like a real brain, but it wasn’t. SIMON:  How about the bear? Obviously, it wasn’t a real bear? SALLY:  It was, actually. SIMON:  It was? SALLY:  Yeah, it died of natural causes and then they stuffed it. SIMON:  My goodness me, how fantastic is that! BEN:  That was cool! Similarly, David had a quirky interest in elevators. During our conversation, from Sally’s description of the Empire State Building, to the children’s visit to the school, David would often interject stories about museum elevators he liked. For instance, in the excerpt of our conversation below, David said that his favorite part of many museum visits was an elevator he used, which he went on to recall in detail. SIMON [TO DAVID]:  And what was the most enjoyable part of the day for you? DAVID:  I don’t know why, but it was the time we used the elevator.

Younger children and cultural heritage 79 SIMON:  The elevator?! BEN:  I hate elevators! SIMON:  So, [David], why

did you particularly enjoy the elevator? Was it because it was the elevator in the museum, or was it a new type of elevator? DAVID:  I don’t know, I just like elevators. SALLY:  Well, it was a lot bigger than our one. DAVID:  Well, do you remember in the Summer we went again, and they had that new elevator in that new exhibit? And it talked, but we missed it, because we were all yakking! Information – labels, books and the web As I mention above, in their visits to museums, Ben, Sally and David didn’t remember much abstract information during our conversations, such as periods or historical details. They were more focused on individual pieces, and particularly the quirks that made them memorable, such as broken noses and the texture of model brains. However, this didn’t mean that sources of information weren’t important to the three children in more formal learning situations, and they knew where to find information about museums and objects. For example, in conversation Sally and David remembered being given information about exhibits they saw in the Ancient Egyptian collection, during one of their visits to the MFA. Although they mainly recalled information about the composition of pieces through getting close to them or even holding them, they also remembered there were cards containing information. Despite the sketchiness of their memories about ­information on the cards, they remembered where each card was, how to access these cards, and the details of materials they touched being on the cards. Importantly, during one of our conversations the children also remembered a teacher or guide at the MFA that took them around the exhibition. This person was also called Ben, and David and Sally could remember what he told them in more detail, particularly about the objects he allowed them to touch or not to touch. SALLY:  David,

do you remember? I like, ohhh, I went this one time and they told us about this guy who made like a stone, a thing out of stone, and you couldn’t touch it, because it was like old I guess. They didn’t want anyone touching it . . . SIMON:  And were there some [descriptions] as well? SALLY:  Yeah. They had [descriptions] for people who needed them on cards. SIMON:  And did they have a special teacher for you there? SALLY:  Yeah, and he was called Ben. SIMON:  Right, like our Ben? SALLY:  Yeah.

80  Ageing and disability in cultural heritage SIMON:  And . . .

what did Ben talk to you about? Did he give you a tour of the museum? SALLY:  Yeah, we like went through, like, I remember it we saw the . . . Egypt one. And we saw like, we saw a real tomb, and we saw like the bottles that they used to put the organs in, like they used to do. Like the bird . . . Well, . . . it had, like, a card that said how old it was. SIMON:  Right, interesting, so it had a postcard as well? SALLY:  Yeah. SIMON:  And did they describe its history, as well? SALLY:  Umm, not that I remember. It wasn’t just written information that Sally, David and Ben were familiar with, during our conversations they also remembered audio and multimedia information they’d been given. Again, although all three children were sketchy in remembering the information they provided in informal contexts, they would often find the information providing technology in museums fascinating. For instance, as I observed when talking about their bonding experiences at school, David and Ben often spoke on the telephone after school. During one such conversation it also came to light that what all three children liked was the way their school’s museum also had telephones that provided information next to each exhibit. BEN:  They

have phones, and as soon as you pick them up they start talking [explaining the objects in the museum]. SIMON:  . . . And you enjoy that? ALL:  Yeah! Information communicated through technology also provided an effective link between the museums and class during my study at the school. Lessons were the most effective way of providing knowledge for the children, and information in formal classes – perhaps unsurprisingly – were recalled in more detail. However, when multi-media was used to provide a link between museum visits and class-based learning, children seemed to recall the information provided in these lessons in greater depth. For example, in conversation with the children, I found they remembered how the Parthenon was built. A model of the Parthenon was in the museum, and a teacher they were also taught by, Mrs. Wexford, had shown them a video of the building process on her interactive whiteboard during class. This link between class and the school museum seemed to spark the children’s imagination, and brought their topics to life. SALLY:  Sometimes,

we watch videos [of pieces at the museum], like how it was founded, like, how old the bones were. SIMON:  Were the videos in the museum, or did you have them in class?

Younger children and cultural heritage 81 SALLY:  We

had them in class. Yeah, like Mrs. Wexford got that huge screen thing in her room – the [interactive whiteboard], I think. And we found out how, like, the Parthenon, in Greece, like the building, was built. BEN:  We found out, and we watched a video on that. The web also provided an opportunity for developing an interest in museums and cultural heritage. During our conversations, and finding out earlier that they were keen users of the computers at school, I asked the students about searching for museum objects and exhibits online. Although the children didn’t show an especial interest in special objects or exhibits themselves, they seemed to be curious about discovering information about museums’ back stories. For example, Ben was interested in researching the MFA both before his initial visit to discover what it was, its history and what his visit might be about. After, he also visited the website, as he hadn’t been well behaved during his visit, and again this had made him curious about the institution itself. Although he found out some information about the museum, he seemed to find the page visits themselves uninspiring. BEN:  I Googled

the MFA once, [but] I only came up with three results, it was not a good page. SIMON:  Did you go on the MFA page? BEN:  I Googled MFA, and I looked for information on it. SIMON:  And what were you looking at on it? BEN:  I was just Googling the MFA to see what people did there. SIMON:  So, you were more interested in what the MFA was? BEN:  Yeah, and how it was founded and stuff. SIMON:  Was that around the time you visited the MFA, Ben? BEN:  Ummm, that was actually before, and it was after the time [too] . . . I was rude to the tour guides [during my visit]. SIMON:  So, you’d been to the MFA before you Googled it? BEN:  I was like twelve, and now I’m thirteen, and I didn’t know what it was, and now I know what it was. However, as much as it provided a tool of curiosity, the internet also highlighted inequalities and a passive exclusion that boarding students can feel. For example, during one conversation it came to light that Sally’s computer was at home, and so she was largely dependent on her supporter at school for her online information. This provided Sally with the challenge of lacking freedom to search for information in her own time or, on the spur of the moment, for satisfying her curiosity and developing soft-skills. SIMON:  Do

you get set homework or after school tasks [in the museum] to look for pictures on the Internet? Do you ever look for pieces on the Web?

82  Ageing and disability in cultural heritage SALLY:  I can’t,

I can’t at school, because my computer’s at home. But my [supporter] can go on the Internet, you know my [supporter], you know we all have one. We need a card to go on the Internet . . . I read, but I don’t go on the Internet.

Spaces and places – schools, museums and parklands Of the four stages of developing inclusive capital, the role of spaces and places seemed to be least important to Ben, David and Sally during our conversations. However, as with Sally’s visit to the Empire State Building with her mom, the thought of a visit to a familiar or exciting place that could spark the imagination, provided a sense of anticipation. This sense of anticipation was amplified if the students felt some connection with the place, as it seemed these strong memories engendered a sense of loyalty. For example, during my study Mrs. Waterford’s class were about to go on a trip to Plymouth Plantation. This plantation was a large parkland where actors and Native Americans reenacted the relationship between early European settlers and First Nations people. This reenactment took place in a series of villages on the site of the first European settlements, a topic that Mrs. Waterford had talked about in class, and a topic that had local resonance. David and Ben had been to Plymouth Plantation before with Red Leaf School, and the class itself was excited by the thought of going there again. David especially looked forward to visiting the plantation because it was a pretty place. SALLY:  We’re going to Plymouth Plantation . . . It’s another museum. SIMON:  As in, where the Plymouth Rock is? SALLY:  Yeah.   [Mrs. Waterford describes this is a series of model villages, with

actors and First Nations people performing the role of settlers from the 1620s and First Nations people.] SIMON [TO ALL THE CHILDREN]:  And, are you excited about that? SALLY:  Yeah! DAVID:  Yeah, this will be my third time. SIMON:  Oh, so you’ve been there before, twice? DAVID:  Yeah, but [Sally] wasn’t in my class. She didn’t come here then. SIMON:  But you Enjoyed it there, David? What did you particularly enjoy about it? DAVID:  The design of the place was nice . . . SIMON:  And did you like talking to the actors? DAVID:  I think so. I think that was pretty cool. It’s just pretty there. In another example of early loyalties to cultural spaces and places, during a conversation on the school museum I also asked Sally, David

Younger children and cultural heritage 83 and Ben which museum they liked best. Each student had an individual opinion about which they liked: Ben based on his experience with family, David on the technology and elevators that they had, and Sally on the exhibits she could get close to. However, whatever their reason, each child found they had a genuine emotional attachment, which they liked to discuss. SIMON:  So, which is your favorite museum of all of them? BEN:  Well, I like that MFA better, or the museums I went with my family. SALLY:  I like going to the school museum, because I get to [get close to] stuff,

like the bear, the swan, the fox. Whatever their preference for museums, David, Ben and Sally all associated visiting a museum or a parkland as a treat, which gave a sense of enjoyment in its anticipation. Although, as I wrote above, they seemed to have varying recollections of the exhibits and the information they were given, in conversation they never sounded reluctant to go on a visit. For example, even in her previous school, Sally always regarded museum visits as a pleasure, as it meant that she didn’t have to do what she felt was schoolwork – presumably learning through classroom activities, such as reading and writing. This was telling as, although the museum visits she described all had an educational purpose and were a form of schoolwork, and Sally had learnt from them, she didn’t see it that way. SALLY:  Like,

when I was at my old school I got to go to, like, this museum with my class, and like we were in groups. SIMON:  What was the most fun thing about that, when you visited those museums? Did you enjoy just being at the museum? SALLY:  Yes, I did. It was better than doing work. This perception of a lack of educational purpose at museums and parkland came in spite of making exercises set by their teachers at the end of visits. For instance, as well as molding the objects at the end of their tours of museums, their teachers also taught the children about the museum itself, seeing an important aesthetic place and space as part of their cultural education. SIMON:  Ahhh, so you did the architecture of the building itself at the MFA? ALL:  Yeah! SIMON:  And you made an MFA [in clay]. BEN:  No, I made a school. SIMON:  So, you made a school? BEN:  Yeah, it was called, Weird . . . I don’t know what . . . it was called . . .

I can’t remember what it was called. I can send you a picture of it if you want?

84  Ageing and disability in cultural heritage

Discussion In their early teens, cultural education was important for Sally, David and Ben. However, historical knowledge of exhibits and objects seemed to be of less relevance than developing exciting experiences during their visits and bonding with their families. Bonding experiences became particularly important for Sally and Ben, because their boarding status at Red Leaf School meant they saw their families less. Museum and park visits subsequently became super-bonding experiences for these two children, and were a time they could develop affectionate memories. Of their most important learning experiences, all three children’s most memorable visits included activities that sparked their imaginations and linked them to objects or institutions. For example, the interactive making exercises at the MFA meant they remembered quirks in sculptures, such as whether the figures had broken noses or snakes added. What’s more, Sally’s experience of cutting the line and Ben’s memory of playing with toys with grandma, were particularly powerful memories that had stuck with them for years. As I found in my research of adults at the Met,4 museums also weren’t simply objects, exhibitions and experiences as individual memories. Even in their young years, all three children had developed a fledgling loyalty to an institution based on what these memories provided. For instance, Sally said she liked the school museum because she liked the stuffed animals, and Ben had liked the MFA and other museums he had seen with his family. What’s more, Ben’s curiosity of what the museum was, and his experience of naughty behavior – and presumably being chided for this behavior – had led him to search for the MFA on Google before and after his visits. It was these memories of cultural development they were carrying with them would give these institutions a conscious depth and a sense of inclusion. This sense of inclusion was a type of understanding that the learning of cultural knowledge alone couldn’t do. So, how do experiences impact on older students’ lives? What’s more, what happens when children aren’t exposed to these experiences of visiting museums and parklands with their families? In the next chapter, I examine these questions through the experiences of older school students, aged eighteen and over, and studying at California School for the Blind.

Notes 1 Sroufe (1979) 2 Hayhoe (2008, 2017) 3 Goffman (1991) 4 Hayhoe (2017)

Younger children and cultural heritage 85

References Goffman, E. (1991). Asylums. London: Penguin. Hayhoe, S. (2008). Arts, culture and blindness: Studies of blind students in the visual arts. Youngstown, NY: Cambria Press. Hayhoe, S. (2017). Blind visitor experiences at art museums. New York: Rowman & Littlefield. Sroufe, L. A. (1979). The coherence of individual development: Early care, attachment, and subsequent developmental issues. American Psychologist, 34(10), 834.

6 Diego and Phoebe at California School for the Blind, San Francisco Bay

Introduction As I observed in the last chapter, experiences in schools with special classes often differ from what we term public schooling – that is to say, schooling for children who are not considered to be disabled. This difference is not simply from experiences of teaching styles, they are also caused by the institutional nature of providing an education for students with disabilities. Culturally, many children in special schools live on campus, far away from home, and see their families less than most children without disabilities do. Many children in special schools will also socialize with other children with disabilities, and these become their main peer group. Children in special schools are also more dependent on their schools for their welfare, for their nutrition and for their security. Consequently, in previous work with disabled children in special schools I noticed these children will be less likely to ride around neighborhoods or pick fights with each other. They are less likely to understand the social and cultural rules they develop from squabbles, or when situations in the outer world are friendly or dangerous. Children who attend special schools are also less likely to play spontaneous games with their friends in fields near their houses, and often understand different social rules of communication. These children are also unlikely to climb trees in their gardens with their friends, or their sisters and brothers, and evaluate physically dangerous situations and their own limits. In this chapter, I look at the effects of these separate experiences on the cultural heritage of older students with disabilities at the end of their special school careers.1 These experiences are discussed through the experiences of two final year students at California School for the Blind, whom I called Phoebe and Diego. Both students were young adults when I conducted the study at the school, and were making choices about what they wanted to do when they finished school. Although California School for the Blind is, as its title suggests, primarily for students with visual impairments, in common with similar schools it also educates students with other disabilities too. Subsequently, and in common with

California School for the Blind 87 the focus of rest of this book, this chapter features students with more than one disability. What’s more, the identities of these students are anonymous, which is also in common with the other cases in the previous and following chapters. As these were older students, and were adjudged less vulnerable than the students I interviewed at Red Leaf School, I talked with these students oneto-one – at the beginning of each conversation, I also explained my study to the students and got their consent to discuss the topic with them. The students taking part in the study were recommended by senior members of staff, who I had been put in touch with by the school’s superintendent. I had worked with the school on previous studies, and had what I felt was a good relationship with several members of staff, including the superintendent. The superintendent also gave permission to use the name of the school in subsequent reports of the study. During my study at California School for the Blind, I attended arts classes and met key members of staff, including teachers and senior managers. I also took images of artworks around the school, educational tools used for work in the present and past – the past tools were also displayed in the library as exhibits – and the environment. This information helped me understand the nature of artwork at California School for the Blind, the environment the students worked in, and the kind of work the students did in class. During this early fieldwork, I also managed to find literature and websites documenting California School for the Blind. This provided a sketch of the environment I worked in, and a context for my conversations with the students and teachers.

California School for the Blind and Fremont The charitable foundation of California School for the Blind dates to March 1860, and was originally formed as a school for students with hearing and visual impairments. The school’s charitable foundation was originally called Society for the Instruction and Maintenance of the Indigent Deaf and Dumb, and the Blind in California2 – as I wrote in the first chapter, the term indigent was often used to describe people with disabilities, as it was felt disabled children should learn moral work. The first school building was in central San Francisco, central California, and was organized by a group of women from local wealthy families. In common with many special schools I wrote about in Chapter 1, the curriculum at the time was based on vocational training to provide a skill, and to prevent students begging. The school changed physically, socially and academically since these early years, and is barely recognizable against its history. In 1867, California School for the Blind relocated to a purpose-built campus in what is now the town of Berkley, near the city of Oakland and still in the San Francisco Bay. Unfortunately, these new buildings didn’t last long, and it was destroyed by a combination of earthquakes and fires in the late 1870s.3

88  Ageing and disability in cultural heritage After being housed in temporary accommodation from 1877 until 1890, the school moved into its last campus in Berkley, built in traditional university style on the side of a hill. This red-brick school campus is now part of University of California, Berkley. In 1980, California School for the Blind moved to Fremont, in Almeda county, and further around the San Francisco Bay, where its campus is today. The school is in the north of this small city, near Fremont’s Central Park, and is surrounded by detached modern houses with sizable yards, all of which are overlooked by dry mountains. The school is also close to the wide main road that passes through Fremont, from north-west to south-east, and it is not far from a local strip mall, medical facilities and frequent bus-stops. Fremont City itself is on a large alluvial plain, which has an area of protected wildlife, fauna and flora running along the entire length of its bay coast. The city itself is directly to the east of Palo Alto and Silicon Valley across a narrow stretch of the bay. This all means it is not directly on the Pacific Ocean, and it is largely protected from its most extreme winds. As it is squeezed between the bay to the west and mountains to the east, Fremont’s air smells fresh and dry, and it has a temperate micro-climate almost all year round. The housing in Freemont is largely well-maintained, and its houses are mostly painted or rendered in light colors. It buildings are also mostly far apart, and it has many schools, parks, a community college and sports pitches, and you often see the city’s children and teenagers playing out after school. Like Paisleyton, Fremont has a sector of old clapboard housing dating from the nineteenth century; although, unlike Paisleyton, these older buildings are only a small area of the city, and largely historically preserved. This older part of the city has a traditional railroad that serves points to the east of Fremont but doesn’t go beyond central California, and its station is preserved for its historical value. Fremont is also served by a light monorail station, the Bay Area Rapid Transit – called the BART by locals – that circumnavigates the bay, and serves Oakland, Berkley, San Francisco and beyond. The rest of Fremont is modern, dating largely from California’s migration boom in the 1950s. Many more new chipboard and concrete houses and apartment blocks have come along since, and serve professionals in Silicon Valley’s tech industry and San Francisco’s financial industries. These professionals now make up an important part of Fremont’s population of slightly less than a quarter of a million people. California School for the Blind is to the north of the city. It has a large, spaced out campus, with a main building at its center, and many smaller buildings spread out around. These buildings are rectangular and geometric with narrow and long rectangular windows, much in the style of contemporary 1980s West Coast architecture, and are rendered a sandy color. There are plenty of lawns, trees, accessible concrete paths and soft play areas

California School for the Blind 89 around and between its buildings, and there is no fence around, allowing it to blend into its local community. In 2011, the school had around eighty students from all over California, most of whom boarded – although the number fluctuated throughout the year, making it hard to pinpoint the exact roll – and thirty-five specialist fulltime teaching staff. The school also had numerous support staff, boarding staff and volunteers – some of whom were parents, who were encouraged to participate in its boarding houses.4 The single largest cultural group in the school were Hispanic students, who made up almost half the student body. The school itself had a full academic curriculum, and had purpose-built classes and labs for subjects such as art and science, a large library and many computing facilities. The art department also had an outside kiln and workspaces for the students. Older students also attended the local community college, to improve their academic skills and take their high school diplomas, in readiness for further study and work. What now follows in this chapter is Diego and Phoebe’s cultural development of inclusive capital in its four stages.

Diego Diego was a twenty-year-old man and in his final year at California School for the Blind when I met him. He was born and raised in Santa Rosa, northern California, but had been resident at California School for the Blind for around two years prior to our meeting. Diego’s first language was English, although the household he came from was largely Hispanic speaking, and he seemed comfortable in both languages. Bonding: Diego’s early years at home Diego’s earliest experiences of bonding were at home, and in the immediate vicinity of his family. He didn’t remember going to school until he was seven, or getting any extra support from California State when he was at home. Consequently, Diego was only educated formally and only came across state institutions in his day-to-day life after a prolonged period of developing inclusive knowledge, habits and skills at home. Diego was disabled from birth, and during our conversation he told me that his disability was much the same throughout his life, and so he had not had to get used to many changes. This lack of change seemed important in providing stability, and Diego told me that he felt fortunate his condition hadn’t worsened. SIMON:  How long have you had your [disability]? DIEGO:  I’m essentially born [disabled], it’s genetic . . . SIMON:  And, has your [disability] got worse over the

about the same?

years, or has it been

90  Ageing and disability in cultural heritage DIEGO:  Luckily,

[my disability’s] been just about the same; it’s been just about the same.

After attending public schools in California until high school, Diego transferred to California School for the Blind aged eighteen. This meant he was closer and more reliant on family members for help as he had little support at school, which increased his family bonds. This also meant that, apart from other family members with the same disability, Diego knew few other people his own age with disabilities. SIMON:  Before

you came to California School for the Blind, were you at another school before that? DIEGO:  Yes, I was at a public school. SIMON:  Right, and what age were you there from? DIEGO:  I was in public schools from third grade up to two years ago. This is my third year at California School for the Blind. As he spent many of his earliest years at home, Diego also became close to family friends. As a small child, Diego’s closest friends were also largely from his local Hispanic community in Santa Rosa, and were people who knew his family. These family friends reinforced his sense of being part of a close community, provided a strong cultural identity, and during our conversation he often told me about his Hispanic background. Diego also got most of his early experiences of play and the arts from his family and friends, even when he got to school. He especially relied on family members for physical help, early education, speech and emotional support, and his family encouraged him to draw and paint at home. During our conversation, it also seemed that Diego’s family and his community were still his main cultural life during visits home. Which seemed to be why he enjoyed artwork later in childhood and saw museums as an important cultural experience. For instance, during our conversation, Diego told me he’d visited a museum in San Francisco once, to view the King Tutt exhibition, when he was an adult at California School for the Blind. Consequently, he saw this visit as an important step, and later he also enjoyed searching for museum images on the web. SIMON:  Have you come across fine art paintings . . . DIEGO:  Not too much, but we did get taken to the museum once. SIMON:  Was that with California School for the Blind, or was that

with another school? DIEGO:  California School for the Blind. SIMON:  Which museum was it? DIEGO:  It was a museum in San Francisco. It was the King Tutt exhibit. SIMON:  And, did you enjoy that? DIEGO:  I enjoyed it a lot!

California School for the Blind 91 Learning – cultural learning and ambitions for learning In several key respects, Diego’s most important experience of learning was the passive exclusion he experienced as a child at public school. It’s this experience that held him back, it’s this experience that helped develop a love of art, and it’s this experience that cemented cultural bonds with his family and his home community. For example, during our conversation, Diego told me he didn’t have much access to specialist support workers in his early public schooling – even when he had access to specialized materials, the size or appearance of these technologies and materials often singled him out for his disability in class. These supporters and materials were something that he’d only recently been provided, and something he seemed acerbic about in his reflections on these experiences. DIEGO:  No, they didn’t teach me [with specialized reading techniques]. They

helped me with screen readers as far as CCTV goes, but that’s about it . . . I had enlarged books, so I had really big books. After receiving little support at public school, Diego didn’t graduate. As he told me during our conversation, “I’m actually currently working on that . . . Right now, I’m taking an English class [at community college]. So, I’m working towards my high school diploma.” Diego experienced an even deeper sense of passive exclusion after not graduating, feeling an almost tangible divide between himself and others he’d been in class with. Consequently, Diego still had little faith in his academic ability, and this affected the nature of the inclusive capital he learnt. This lack of faith was a feeling that he still carried with him in his later academic tasks, and a feeling that made him think of himself as incapable of academia when he left public school. Which seemed to be why, and almost paradoxically, Diego was more included in an exclusive environment like California School for the Blind than he was at public school. At least in this latter school, he could experience a form of inclusion, and develop a more useful form of inclusive capital that would make him more independent. DIEGO:  Back

in public schools they didn’t provide me with the best services, and so, they provided me with CCTV and large print at first, but that’s about it. SIMON:  So, you didn’t have access to [computers]? DIEGO:  No. I didn’t have the adapted technology. So, I actually didn’t learn to type until I got her to California School for the Blind . . . SIMON:  So, they didn’t provide that [technology at public] school? DIEGO:  No, that’s why I didn’t do so well. Despite having little access to cultural heritage in childhood, at California School for the Blind Diego continued his love of art, and an alternative

92  Ageing and disability in cultural heritage understanding of viewing art. This love of art meant he respected the exhibition more when he visited a museum in San Francisco with the school, and consequently linked this experience of art with visiting the museum. For example, Diego told me that on their tour of the museum he and the other students were accompanied by a museum guide who provided descriptions of objects and historical periods. Diego found this gave him an interest in his visit, and provided a sense of enjoyment of the objects’ histories. DIEGO:  One of the staff was doing SIMON:  Did you enjoy that? DIEGO:  Yes, it was really good.

audio describing for us.

Despite enjoying the descriptions, however, Diego was frustrated by the lack of access to exhibits, especially the inappropriate lighting and his inability to touch many of the exhibits. These presented a barrier to learning, one that he felt affected his experience of accessing the museum for the first time. DIEGO:  I enjoyed

the exhibition a lot, except for in the museums sometimes, like, sculptures under glass. SIMON:  But did they let you touch the exhibits. DIEGO:  Some, yes, they did allow us to. But some, for example the ones under the glass, they didn’t. SIMON:  Allow you to? DIEGO:  Yeah, Yeah. It was difficult to see, just because it’s dim, and it’s under the glass. SIMON:  So, the lighting wasn’t good either? DIEGO:  Yeah. But for the most part it was very good. Importantly, Diego’s earliest experiences of learning art came from home, and were associated with his earliest relationships. Which seemed to be why, even though Diego’s formal art education was limited to simple drawings at public school, he remained committed to this habit as a child. For example, during our conversation Diego told me he remembered being encouraged to draw with a range of art materials at home, providing a sense of normalcy. He also told me he came from a background where doing art was important. Subsequently, this love of doing art was replicated informally at public school, and he said that he liked finding paper to make doodles whenever he could. Through practice, drawing became a habit that gave him a sense of self-worth, and made him feel included. Largely because of his early bonding experiences, Diego felt he had positive experiences of the visual arts. However, it was at California School for the Blind that he’d developed an understanding of doing art as an academic activity, that also gave him an academic sense of inclusion.

California School for the Blind 93 For example, during our conversation Diego told me he now enjoyed visual art as a creative subject, and particularly enjoyed using colors as free form artistic activity at California School for the Blind. This new understanding of his practice as a form of inclusive capital was also a skill he found allowed him to use materials he used at school, but had previously been wary of. DIEGO:  I like

to draw a lot. I always drew on papers . . . But here, I do take an art class here. It was working with clay a lot, and we also did, like, shades. SIMON:  So, you used colored pencils? DIEGO:  Yes. SIMON:  And did you enjoy it? DIEGO:  Yes, very much, especially the clay part, because its more hands on. This new experience of art seemed to be why Diego now thought of artwork as an academic type of inclusive capital. In these classes, Diego had also been able to formally develop drawing techniques and get feedback from teachers. At California School for the Blind, Diego also said he now saw art as a practice that favored his disability, as he worked with substances that he could reshape. Diego also told me this approach made him feel more comfortable, as clay especially had more tactile qualities and his instruction was designed for students who found traditional fine art difficult. DIEGO:  [At

California School for the Blind] I draw more and I make a lot of stuff out of clay. I enjoy it more basically, because of the teachers who are trained to work with [disabled] students, unlike the other teachers at public schools. They’re good teachers [at public school], but they don’t have much experience of working with [disabled] people before . . . So, it was a little more difficult sometimes to understand what they were explaining in front of the class, but here it works really good.

Information – sourcing and using cultural information At California School for the Blind, and although he still had a limited sense of his self-worth, Diego was an ambitious learner and actively sought out information. This ambition allowed him to envisage a future that made him feel a sense of inclusion in the broader society, and make him more socially and culturally independent. For example, after graduating California School for the Blind, Diego said he hoped to study the Hadley Centre’s course for assisted living, a course he had researched himself and discussed with his tutors. The Hadley Centre’s course is a distance education diploma for students from special education, and designed for people whose most significant

94  Ageing and disability in cultural heritage disability is visual impairment. Importantly, the course would eventually allow him to live and socialize by himself. During our conversation, Diego also told me he now wanted to work independently, and said he hoped to become a forensic or ear nose and throat technician. To qualify as a technician, he recently discovered he needed to develop more computing and literacy skills and gain a high school diploma, something that gave him a target to work towards at college. It was not certain he would get this certificate, but his aim seemed to be important for his self-confidence and self-worth. DIEGO:  I learnt

how to type and then I started getting into the internet. I started researching stuff. SIMON:  And, you use them for researching? DIEGO:  A lot more than I used to, that’s for sure. But I’m still working on my computer skills. Diego’s loyalty to museums, developed through his visit whilst at California School for the Blind, encouraged him to independently search the Web for images of artworks. In doing so, he recognized the institutional presence of the museum on the Web was an extension of the physical museum building. What’s more, Diego’s intellectual understanding of artworks was also developed through reading about images via the web, which he said he used “quite a bit.” Importantly, Diego also realized that the information he sought about images was intellectually useful. DIEGO:  For

images, sometimes I find I often run into trouble seeing images on screen, because they’re not very light and not very clear . . . Sometimes it describes what it is. SIMON:  Are these labels helpful? DIEGO:  Yes, very much. However, Diego was often frustrated by the lack of accessibility that websites had, and the lack of thought that went into developing these websites. Most particularly, during our conversation he often lamented on his difficulties with reading images, as well as foraging for their descriptions. For instance, Diego’s difficulty with images often seemed to be related to a problem he had with understanding light and dark colors. This problem was partly rectified by software that reversed his colors on screen, making Diego’s text more accessible. However, this software also made images mostly unreadable – this lack of access to images was an issue not normally considered in accessible software standards. “I like to read with a black background with white writing, but when it comes to pictures it makes them look funny.” His access to artworks on the Web aside, Diego found that his new technologies and classes at California School for the Blind gave him confidence to search for information by himself. The combination of his enjoyment of art

California School for the Blind 95 and these new technological skills also gave him a new sense of independence to hunt for different types of information to find a sense of inclusion. DIEGO:  I learnt

how to type and then I started getting into the internet. I started researching stuff. SIMON:  And you use them for researching? DIEGO:  A lot more than I used to, that’s for sure. But I’m still working on my computer skills. Places and spaces – experiences of and loyalty to institutions Diego’s late start at public school, and his passive exclusion in class as a child, was something he’d fought hard to adjust to throughout childhood. This exclusion at school also had a deep and long-lasting effect on his loyalty to spaces and places, and led to adjustments in inclusive capital. Consequently, despite his stable experiences of disability, Diego often felt set aside by institutions that should have been part of his life, such as his public school. What’s more, despite being an adult and increasingly socially independent, the legacy of Diego’s late entry to school and his lack of early support were still the biggest issues he faced. More particularly, these experiences left him feeling a sense of exclusion of place and space in mainstream settings in childhood, and this seemed to affect his sense of self-worth. However, during our conversation it seemed Diego’s attitude to institutions had changed. In his time there, he developed a sense of loyalty to California School for the Blind, an association he made after positive experiences. This loyalty was developed after public school when, rather than being put back a year, Diego transferred to the school where he became a boarder. At the time of my study, Diego also said he felt a sense of inclusion in the local community college he now also attended in Fremont. This dual membership of schools, also meant Diego remained a part of spaces and places that were a combination of disabled and non-disabled environments, and differentiated inclusive capital. Diego’s new sense of inclusion also seemed to extend to his cultural experiences. During our conversation, Diego told me he didn’t just enjoy his experience of visiting the museum in San Francisco as an opportunity to see the King Tutt exhibition. His visit also helped him develop a bond to the museum as an institution, and made him feel a sense of inclusion in a space and place he hadn’t considered previously. Even though this museum visit was some while before my study, he still remembered the museum fondly and held it in high regard – it became a sense of fulfilment. DIEGO:  I enjoyed more the museum, just actually being there. SIMON:  So, you enjoyed the experience of being in the museum? DIEGO:  Yes.

96  Ageing and disability in cultural heritage

Phoebe Phoebe was also twenty years old and in her final year at California School for the Blind, where she had spent most of her childhood as a boarding student. This made her the longest attending boarder at California School for the Blind. “I’ve been here pretty much thirteen years. I’m the oldest student who’s been here the longest. This is my last year.” Bonding – early school and family experiences During our conversation, Phoebe told me she’d attended two public schools until the age of about five or six years of age, although she also said she couldn’t be too sure how long she’d been at each. She left these public schools after short spells in each, and she’d attended California School for the Blind uninterrupted ever since. Phoebe said she felt comfortable at her school, and seemed to have close relationships with most of the staff, both teaching and support staff, many of whom she’d known for many years. Phoebe was originally from an island with a small community in Alameda, which was only accessible by boat being just off the coast of Oakland in the San Francisco Bay – the island also wasn’t far from Fremont, which meant she could visit home regularly. Phoebe’s family were English speaking, and this was the language of her home and school life. It seemed that family life was Phoebe’s first and most important bonding experiences. From our conversation, it seemed that Phoebe had a close relationship with her family, and she often talked about her experiences of playing and socializing with them. What’s more, even though she was a boarder at the school during the week, she told me she saw this family often at weekends and during vacations. Consequently, and as with Ben and Sally at Red Leaf School, and although she was a boarder, even in 2011 Phoebe’s bond with her family was stronger than her bond to the institution. What’s more, many of her early learning experiences with family members helped to shape her later loyalties to topics and subjects during her education. For example, although she spent most of her time at school, her experience of being taught drawing by her sister affected her deeply, and she subsequently felt a deep connection to this skill. This love of drawing later translated itself as a bonding the subject of art, and a loyalty to art classes later at California School for the Blind. During our conversation, Phoebe constantly told me how much she loved doing art so much that she’d like to study it at a higher level later. She also told me how she’d adapted her drawing skills to minimize the effects of her disability during art class. PHOEBE:  My

sister, she taught me how to draw and stuff when I was a kid. And I just continued drawing . . . I like really anything in my art class. My favorite thing, if I was, if I was going to go into art, which I am

California School for the Blind 97 going to, I would probably do clay. I think I like it more than anything else: the feel, the texture, the way that if I messed up, I can just squish it instead of throwing away a piece of paper and getting a new one. Phoebe told me her first disabilities had been identified when she was three months old, although it’s probable she’d had them since birth. Her other disabilities had been progressively recognized after her development was monitored by health services. Like Diego, Phoebe’s disabilities had been relatively stable throughout childhood. Which seemed to be why, also like Diego, Phoebe felt this stability made it easier to form profitable relationships with teachers, her surroundings and educational opportunities. This sense of stability also made it easier to form bonds with her family and school workers, as she still relied on them for physical, emotional and learning support outside school. Learning – cultural learning and ambitions for learning Phoebe’s experiences of learning inclusive capital appeared to be defined by two important experiences at California School for the Blind. The first experience was the stability from staying in a single school throughout her education, as well as the stability she felt from having an unchanging disability. The second experience was developing academic ambitions through California School for the Blind. For example, during our conversation Phoebe told me that in future she’d like to go to college at some point, a rare ambition for a student at special school. Her ideal later studies, she told me, would include some form of expressive art and craft diploma, even though she’s had to adapt her drawing skills to negotiate round her disabilities. PHOEBE:  When

I draw it’s like something that I’ve seen more than once. So, I’ve got a clear picture of it and I don’t mess it up that much. SIMON:  And this is not to do with the fact that you can’t see drawings so well? PHOEBE:  No, it’s because of the fact that I’ve just got to pay attention to them. However, Phoebe recognized that to get into college, she’d need to get her high school diploma from a local community college, and take the Hadley diploma. These diplomas were something she aspired to, despite the difficulties she felt she faced achieving them. “I don’t know how, because I would need a high school diploma. And I would like to, eventually, maybe.” As she had been at California School for the Blind for many years, Phoebe developed advanced technological skills with specialist computer equipment,

98  Ageing and disability in cultural heritage which seemed to be why she felt comfortable using technology for schoolwork. These skills also meant that Phoebe could access artworks in her own study time that she couldn’t normally access in other ways. For example, Phoebe had never been to a museum or gallery at the time of our conversation. Despite this lack of opportunity, she told me she’d been on the websites of several museums and followed “a virtual tour, because it’s easier than going there and figuring them out.” Phoebe’s virtual tours hadn’t increased her understanding of the museum. Consequently, she couldn’t remember the museums she’d toured, and didn’t appear to be aware of the location or structure of the museums she was viewing. “They’re pretty cool . . . but I’ve no idea. They’re just on the internet and I just went through a bunch of them.” This use of the Web as an information source showed that Phoebe’s disability didn’t have the greatest influence on her ability to source information. More particularly, the technological skills she learnt at California School for the Blind encouraged her to find new sources of information, new lines of study, and become critical. For example, despite her disability Phoebe’s love of art gave her the freedom to explore the descriptions of images of artworks on the Web. These descriptions were provided by their captions and the tags that were picked up by her, but became frustrating for her when virtual tours of museums lacked verbal content about artworks. PHOEBE:  What

I couldn’t figure out was if a blind person were to go on the computer and do a virtual tour, they don’t tell you what the picture looks like. They won’t describe it, because on the websites now they sort of tell you what is going on in the picture. And the ones I’ve looked at before they would just skip the picture altogether and just go on and tell you who made it, and then, like, when it was made and stuff. SIMON:  What did you like about the description? PHOEBE:  They told me more. Because I could, like, see it but it sort of told me more that I was not noticing . . . they like described the background, what was in the picture and then I could get an idea of what it was supposed to look like. What’s more, these virtual tours gave Phoebe an understanding of the nature and structure of the museum as an institution, something she could relate to her family bonds. Subsequently, given the opportunity, Phoebe wanted to visit real museums, as she wanted to know more about her own cultural heritage and her preference for old artworks and objects. PHOEBE:  No

one’s ever taken me to one . . . Like I said, I like old stuff, because I grew up with everything that was really, like, old and stuff . . . My grandmother grew up in the Philippines, which I found really

California School for the Blind 99 interesting, which is really cool too, and so I like just like really old stories, old books. I don’t really like anything new, like I mean I do but I don’t. I like older stuff. Information – sourcing and using cultural information Phoebe had developed skills and habits of accessing information via the Web for some time at California School for the Blind. This allowed her to develop her own research interests and provided her with a sense of independence and inclusion beyond the school. For example, in conversation Phoebe told me she’d been using the Web since her early teens, primarily for emailing and personal research. She’d accessed her interface through JAWs – a screen reader which provided aural representation of the text on screen or read alternative tags for images – but she found accessing many images frustrating as there were few with descriptions. Subsequently, Phoebe told me she enjoyed practicing art more than studying the art of others. As well as developing research skills, Phoebe’s knowledge and use of technology also allowed her to develop a sophisticated understanding of where to find information and its use to her. Through screen readers, she’d also been able to get over her reading problems, as the text was largely spoken. For example, Phoebe’s love of art, “old things” and discussions of mythology with her family was reflected in private research on antiquity and artworks in Greek mythology. As this research was in her own time in class, and didn’t carry academic credit, it was purely from a passion for the subject and to satisfy her curiosity. This information also seemed to help maintain a bond with her family when she went home. PHOEBE:  In

the past, I’ve looked up stuff about Greek mythology . . . California School for the Blind doesn’t really study it, but I do it on my own. Like, I just look it up on my own if I have a spare moment in class. When I look up a certain person, there’s like a sculpture of what they think they would look like, and then they’d tell you it’s a picture of so and so.

What’s more, although she’d developed a knowledge of virtual institutions, and this knowledge made her ambitious about visiting museums, Phoebe also managed to refine her research skills. Subsequently, she didn’t just see the Web as a source of schoolwork or emailing, but as a tool for producing information about artworks and their purpose. Phoebe particularly liked listening to the descriptions of artworks, particularly their history and their composition. As an extension of this skill, and as an addition to her inclusive capital, Phoebe also developed a taste for

100  Ageing and disability in cultural heritage these descriptions themselves. What’s more, she also related these opinions to her own understanding of the design of websites themselves, and developed a sophisticated critical faculty towards their design. SIMON:  Would you really appreciate a longer description? PHOEBE:  Well not long, not really, like, really super long.

That gets really boring. But just, like, a thing about what is this picture. If I was to make my own website, I would put a short little detail under the picture and if you wanted to know more about this one little thing I’d have a link just under that . . . Sometimes it tells you there’s an image here but it won’t tell you what it is . . . It tells you the picture’s there, but if there’s nothing describing the picture, then it won’t read it to you.

Places and spaces – experiences of, and loyalty to, institutions Although Phoebe was emotionally attached to activities, such as doing art, and talked about experiences with her family often, her loyalty to her environments was complex. Firstly, as she had been a boarder at her school for decades, Phoebe’s loyalty to what she felt was her home as a place and space was mixed. For instance, Phoebe talked passionately about her home community in Almeda, but when she did so, she mentioned her family as much as she mentioned Almeda as a space and place. However, when she discussed California School for the Blind, Phoebe mentioned its environment more than its staff. Subsequently, it seemed she related to the space as a home space over the years, and somewhere she was loyal too. Secondly, Phoebe seemed to have loyalty to spaces she could only imagine, and had never actually visited. For instance, Phoebe seemed never to have visited a museum at the time of our conversation, and as such she was the first participant in any of my studies never to have done so – it was unclear whether this lack of experience was due to passive exclusion, as I confirmed with the school that students had been on museum visits previously; I was also told by other students at the school, such as Diego, they’d been on at least one school visit to a museum in San Francisco. However, although Phoebe lacked experience of visiting museums, her desire to visit museums seemed to be linked to her bonds with her family and her love of art. Consequently, Phoebe showed a loyalty to the museum as a place for the arts and a historical institution, somewhere she felt she could learn a sense of place in relation to her family. For instance, and as I wrote earlier, in conversation Phoebe told me she’d wanted to see things from the Philippines, where her grandmother was brought up. Phoebe’s curiosity about physical museums had also been piqued by her visits to museum websites and virtual tours. These websites provided Phoebe an alternative form of access to the museum’s

California School for the Blind 101 physical space, and one that provided a different form of inclusion based on imagination. PHOEBE:  [I’ve

done] a virtual tour, because it’s easier than going there and figuring them out. They’re pretty cool . . . [but] I have no idea. They’re just on the internet and I just went through a bunch of them

Despite her lack of experience of the physical institution, her experiences with art on the web, her love of art, her love of knowledge and her heritage still made her want to visit a real museum. Which seemed to be why, given the opportunity, Phoebe told me she’d like to visit real museums, know more about the culture of her family and see older artworks and exhibitions. This desire seemed to indicate Phoebe’s strong emotional connection to heritage built on her earlier bonds with family and school. PHOEBE:  No

one’s ever taken me to one, [but] like I said, I like old stuff, because I grew up with everything that was really like old and stuff. [My grandmother] grew up in the Philippines, which I found really interesting, which is really cool too, and so I like just like really old stories, old books. I don’t really like anything new, like I mean I do but I don’t, [but] I like older stuff.

Discussion There were four distinct similarities between Diego and Phoebe’s experiences of their cultural heritage when they were children. Firstly, their love of art was developed at home through doing art with their family. Secondly, they also seemed to have similarly strong bonds and loyalty to their family. Thirdly, Phoebe and Diego had limited access to physical places and spaces of cultural heritage, and particularly no access to museums. Fourthly, because Phoebe and Diego’s disabilities remained stable, neither had to change their habits much, and their upbringing in this respect was relatively stable. Their love of art and their strong bonds with their families also encouraged Diego and Phoebe to do art later at school. This developed a habit that maintained a strong emotional connection with their families and their heritage. Subsequently, their development of inclusive capital in this respect appeared to be similar, and they developed similar habits and skills in the arts. However, this seemed to be where many of Diego and Phoebe’s experiences of cultural heritage diverged. Importantly, because he was passively excluded at public school, Diego’s experiences of learning at school became tainted, whereas Phoebe’s experience fostered a sense of trust. More particularly, during his early education Diego used doing art, drawing, as a means of escape from his passive exclusion from academic subjects,

102  Ageing and disability in cultural heritage which he struggled with. On the other hand, Phoebe, surrounded by peers and others who could support her disability, learnt that art was an academic subject she could enjoy. Subsequently, she learnt research skills, independence in her environment and sought out information herself: on art, on museums and on topics that she learnt at home, such as Greek mythology. However, despite these different experiences of, and lessons in, inclusive capital, there was another converging of opinion. This was the opinion that cultural places and spaces like museums could give a different sense of inclusion. For Phoebe, this sense of inclusion was formed through using technology to research cultural heritage, fueling a desire for visiting museums. For Diego, this sense of inclusion was the experience of doing art academically and visiting a museum. Which is why, alongside a new experience of learning that technology could be useful, he used new information gathering skills to develop a sense of independence through the Web. Consequently, Diego and Phoebe’s experiences can teach us something new about the development of human inclusive capital: the Web, and technologies that channels the Web, have changed our understanding of learning human capital and gathering inclusive information. More particularly, in this instance the Web has allowed students to develop a taste for places and spaces that are often beyond their reach, if they have only visited museums once or not at all. The Web also provides a link between early bonding experiences, a love of art and cultural heritage and the institutions whose role it is to preserve, curate and educate cultural histories. What’s more, this observation questions our understanding of traditional human capital. Although, as Bourdieu suggests, we develop habits that can be interpreted as forms of human capital, this capital is not necessarily stratified, as both Marx and Bourdieu suggest – that is to say, there isn’t necessarily a feeling that you are a higher person for having habits and knowledge that others don’t. In the cases of Diego and Phoebe, the development of habits, skills and knowledge was more a development of a sense of inclusion in their different spaces and places. It was also a maintenance of their bonds with their most important friends and family, people they felt a unique connection with and whose memory they wanted to keep a hold of. So, if the Web has changed the way we developed a sense of inclusion, how did people who attended special schools before the Web develop inclusive capital of cultural heritage? In the next chapter, I address this question through three case studies of older people with an interest in cultural heritage, who boarded at special schools when they were younger.

Notes 1 Hayhoe (2014) 2 California School for the Blind (2017a, para 1)

California School for the Blind 103 California School for the Blind (2017b, paras 3–4) 3 4 California School for the Blind (2012)

References California School for the Blind (2012). School accountability report card (2011– 2012). Fremont, CA: California School for the Blind. California School for the Blind (2017a). CSB history 1860–1950. Retrieved October 5, 2017, from www.csb-cde.ca.gov/csb_history.html California School for the Blind (2017b). CSB history: 1980–2010. Retrieved October 5, 2017, from www.csb-cde.ca.gov/csb_history.html Hayhoe, S. (2014). An enquiry into passive and active exclusion from sensory aesthetics in museums and on the web: Two case studies of final year students at California school for the blind studying art works through galleries and on the web. British Journal of Visual Impairment, 32(1), 44–58.

7 Ruth in New York and Pierre in southern England

Introduction As the students featured in the last two chapters show, experiences of being at special school in the twenty first century still often leads to a disjointed cultural sense of inclusion. Some students are passively excluded from learning, either through lack of support or lack of access to appropriate technologies, and this effects their ability to seek information independently. Other students feel socially excluded, and find themselves graduating separately from their peers, experiencing isolation or simply missing their families. As well as the difficulties of developing a sustainable sense of inclusion, transitions from one environment to another can also effect the reliable learning of inclusive capital. For example, people with disabilities can experience difficult transitions when moving between family environments, boarding institution environments and the adult world. Children with disabilities form bonds and learn different forms of inclusive capital in each of these spaces and places, but then have to relinquish at least part of this capital in each new situation. However, unlike children in public schools who are more likely to see an overlap between their school and family community, disabled children have fewer such overlaps. These transitions not only make moving from one space and place difficult, they can also mean that inclusive bonds are broken. For instance, the experience of not graduating from school with the people you grew up with affects your emotional outlook. Not keeping up with the level of learning of your peers affects your self-esteem, and creates an identity of a person who is incapable of inclusion. Which is why, not visiting museums or other cultural sites, or being excluded from cultural activities because of the perceived nature of disability, can also affect people’s cultural outlooks. This passive exclusion, the covert exclusion that society accepts as logical – blind people can’t paint and draw, deaf people can’t hear music, people who are paralyzed can’t dance, people with learning difficulties have no need of books or paper – doesn’t just affect ubiquitous spaces and places, it becomes a lifetime of disavowal that’s hard to reverse.

Ruth in New York and Pierre in southern England 105 Nowadays, this passive exclusion can be somewhat softened by technologies, which aren’t only efficient at supporting people with disabilities, but also allow access to inclusive information. As became apparent in Phoebe and Diego’s cases in the last chapter, the most efficient assistive technology we have in the modern world for them is the Web. The Web not only allows us to search for information, it provides communication with the outside world, for social networking and maintaining friendships. The Web not only allows us to find out times museums open, it also allows us to browse their artworks, join in museum activities and take virtual tours. This provides a sense, albeit an imperfect sense, of inclusion in museum sites, and motivates people with disabilities to visit museums in person. So, how did people with disabilities develop a sustainable inclusive capital and an understanding of their cultural heritage before the Web? Pierre’s and Ruth’s cases in this chapter address this question. Although they were recorded seventeen years apart, and in two different countries, I chose these cases for this book because they represent five mixed experiences of early disabilities. Firstly, although Pierre and Ruth were born with disabilities, Pierre’s disability was more pronounced when he was younger, whereas Ruth’s became expressed later. Secondly, although Ruth and Pierre had early experiences of public schools, Ruth didn’t attend a special school whereas Pierre did.1 Thirdly, although both Pierre and Ruth lived in rural areas as young children, Ruth lived close to New York City, whereas Pierre lived far from any city before being sent to special school. Fourthly, and most importantly in this book, both Ruth and Pierre had a love of arts in old age, although only Ruth visited galleries in childhood. Fifthly, both participants became further infirm and developed extra although less severe disabilities in older age, and were similarly aged at the time of my studies. Reviewing the study of Pierre and Ruth When I met him, Pierre was studying art in the Richard Attenborough Centre for Disability and the Arts, Leicester University, in 1994 – Leicester is almost exactly in the middle of England, in the East Midlands, in what is considered to be the border of its northern and southern halves. The Richard Attenborough Centre, named after the film star who founded it, ran short courses for people with a range of disabilities, in subjects such as sculpture, paintings and music. Students at the Richard Attenborough Centre also visited museums and attended concerts as part of their studies. From the Fall of 1993 to the Summer of 1994, I spent a year working in the studio: doing observations, recording exercises and talking to participants and teachers who also worked there. This activity was all part of an evaluation at the studio, in order to understand its students’ motivation to learn about the arts, and the teaching the students received.

106  Ageing and disability in cultural heritage As part of my study, I also worked as an assistant in the studio. My work there ranged from making tea, to preparing clay, helping to clean tools and tables, and walking dogs, and this helped me become close to students – a fuller description of this fieldwork was written as the book, Grounded Theory and Disability Studies.2 My conversations with Pierre in the studio were mostly recorded with pen and paper notes, although sometimes I used a small, personal Dictaphone with normal cassette tapes – in 1994 MP3 recorders weren’t available. During our conversations, I talked to Pierre about his earliest artistic and cultural experiences, and the influences of his later experiences from early childhood on his then present life. Another, subsidiary aim of these questions was to discover the foundations of the cultural experiences he felt affected his cultural practices in later life. During my study, and as well as Pierre’s earliest arts experiences, I wanted to discover other aspects of his early life, including childhood experiences he may have previously thought irrelevant. For instance, I wanted to know his understanding of his environment, his development of individuality, and his attitudes towards and the arts experiences of his friends and family. I felt these more personal issues were important after reviewing theories in the literature on student motivation,3 and analyzing my prior conversations with other students in the studio. For example, people born with disabilities tended to feel their passive exclusion from academic studies at school led to a lack of understanding of their cultural environment and cultural heritage.4 I also found the lives of students in traditional special schools were especially regimented and formal, which often repressed creative activity outside class. During the study, my initial questions during structured conversations with Pierre were broad and open. These questions were meant to encourage protracted answers, and large quotes. This often led Pierre to raise important points without any prompting. Even though this made the interview slightly diffuse, it also made his answers and linked ideas more interesting. In later conversations with Pierre, although I started out by interviewing with a script I also wanted to encourage his views on issues he felt were important to him and which I hadn’t considered. Subsequently, I also improvised smaller, subsidiary questions during the interviews when I felt they were appropriate. My conversation with Ruth was very different to that of my time with Pierre. I met Ruth during a tour for visitors with disabilities I had been invited to participate in at a large arts museum in midtown Manhattan, New York City – this was not the Metropolitan Museum of Art, where my study was based at the time, and I attended several such tours during the study. This tour was a part of the study that took in the research I was doing at the two schools in the previous two chapters. The tour was a regular access event at the museum, and provided descriptions and contact with chosen pieces. There were around fifteen people who

Ruth in New York and Pierre in southern England 107 were disabled or their supporters – who were largely friends or family members – on the day I attended the tour. The tour took part during an afternoon when the museum was closed to the public, lasted around an hour and was led by a trained guide. The tour group were mainly regular visitors, as is common practice with many access and education departments I visited. Subsequently, the tours were advertised directly by email, and participants organized their participation by return email or by telephone. The tours were also advertised on the Web, and participants could contact the museum directly to book the tour. Before I attended the tour, I was told about Ruth and another participant who would be willing to talk to me as part of my research. Both participants were told about my research and my study in brief before I attended, and I was introduced to both participants before the tour and arranged where we’d meet afterwards. I agreed to meet Ruth in a coffee shop opposite the museum after our tour, and bought us both coffees. I started our conversation with informed consent, and told her what I was hoping to achieve over the course of our conversation. I also told Ruth I’d be using an MP3 recorder to record our conversation, and some of what may be said might be included in future books and papers. Ruth told me she had no problem with this. I felt that recording our conversation in a coffee shop wasn’t ideal. Ideally, we should have found a private room for our conversation, although we did manage to find a space away from other customers. What’s more, I made sure nothing we discussed seemed too embarrassing and Ruth seemed happy to talk in the coffee shop. I start these two cases with Pierre.

Pierre Pierre was sixty-seven years old at the time of our conversation. He came from a sheep farming family that lived near a small village in North Wales. All his family were Welsh, and subsequently Pierre spoke Welsh as a first language at home, although his language at school was English. During our conversation, Pierre also told me it had been many years since he’d had whole conversations in Welsh. Bonding – experiences with family, friends and colleagues Pierre’s most powerful experiences of bonding were largely divided into two phases: the first phase was at home in early childhood, and the second phase was creating his own family as an adult. In the first phase, Pierre’s earliest experiences of bonding were with his family before he was sent to special school, and these experiences remained his most powerful memories in old age. He often told me that many of his

108  Ageing and disability in cultural heritage later learning experiences related to these early memories, and much of his later motivation and behavior were guided by the games he played at home. Because Pierre was disabled, he rarely left his family farm. This semiisolation meant he socialized with fewer friends his own age than older members of his extended family. However, during our conversation he also told me this isolation didn’t leave him feeling left out, as his family members were great companions and, consequently, these were the happiest years of his life. PIERRE:  I remember

having the normal kids’ liking for building things. I’d find any old bits lying around. There were plenty of things on the farm I could make some sort of a wall with.

Pierre remembered the early experiences of bonding in his family led to his first personal creative experience at around the age of three or four. At the time, he loved playing games to do with the community he grew up in, and these games often emulated the normal life of the farm he felt a large part of. For instance, Pierre remembered sheep-dipping was a major event in the year, as it symbolized the summer when the grubs in the sheep’s fleeces were at their most dangerous. What’s more, Pierre remembered he liked to build things. He particularly enjoyed creating walls out of bricks lying around his family’s barn yard. Pierre especially remembered a game in which he arranged the chairs in his living room in a square, the design of which represented the farm’s sheep-dipping bath. To Pierre, this game imitated the activities and structures his family members used, the behavior he was used to, and the work that represented home and livelihood. As well as his family, Pierre’s isolation meant he bonded with the animals around his home, and these animals almost became substitutes for close friends he missed at the time. For instance, in his sheep-dipping game Pierre often took a farm cat and dipped it into his makeshift bath. He also got an old, lame sheep dog, kept for his company, to stand guard as a policeman next to it as he did so. During Pierre’s second phase of bonding, he developed an independent life and then a family in early adulthood. After leaving university early, something he said he regretted but wasn’t ready for at the time, Pierre found a job as a telephonist in the Ministry of Labour in Nottingham, England. Working in this role was the first period he remembered making a set of friends on his own. He was then in his early twenties, and kept his job for over twenty more years. Pierre told me that it was during his earliest years at the Ministry of Labor that he also met his wife, something that became a focus for the rest of his career. Which is why, even though it felt like unfinished business, Pierre wasn’t able to take his degree until a decade later, when he began a correspondence law degree.

Ruth in New York and Pierre in southern England 109 Pierre graduated with his law degree when he was forty-two, and by this time he’d been married for over ten years and had three children. After graduating, Pierre re-trained and began a second career as a systems programmer in the computer department at Nottingham University, the job he retired from only two years before I met him. Learning – cultural learning and ambitions for learning In common with his experiences of bonding, Pierre’s experiences of learning inclusive capital were largely divided into two distinct phases: his early years at home and school, and his new life after university when he was developing his career and he met his wife. In common with the children in previous chapters, Pierre was largely taught cultural practices by his family, although this was his only creative education as a child. For instance, at around five or six years old, Pierre’s elder brother described several of Shakespeare’s plays to him, and sang pieces from these plays. Pierre especially remembered the play, As You Like It, and was very fond of the wrestler, Orlando. He also remembered Macbeth. Consequently, learning cultural forms of inclusive capital in Pierre’s household were based largely on music and poetry. For instance, Pierre talked often about his grandfather, who was a music teacher and an accomplished local poet. He also remembered his family often took part in choral works in the community, which gave Pierre a strong feeling of being part of his local village community. Music also had a strong influence on Pierre’s Welsh culture, and during our conversation he often talked about Welsh composers and musicians, which he appeared to have studied closely. Pierre seemed to see this love of music as an expression of his Welshness, a form of inclusive capital that he appeared to take pride in. PIERRE:  I had

a brother who was very keen on music and literature. And I don’t really remember a time when he wasn’t both singing to me and also telling me the plots of Shakespeare’s plays . . . My grandfather was very musical. He used to ride around teaching music.

Despite his literary and musical influences from family and community, Pierre was little influenced by the fine arts, as he wasn’t aware that Welsh local culture involved painting or sculpture – although at one point in our conversation he discussed the work of Stafford Johns, a well-known Welsh painter Pierre had studied in late adulthood. Subsequently, despite his family’s love of the arts, he didn’t remember drawing or painting as a child, and he didn’t remember attending exhibitions or public artworks. PIERRE:  Well

music, I mean people sang at home. I did hear music . . . As for painting, that wasn’t in those days, with the exception of one or

110  Ageing and disability in cultural heritage two people like Augustus John. That really wasn’t part of the Welsh culture. It has become so since: painting and sculpture. It has become very much so part of the arts scene in Wales now . . . I was never made to do anything. Pierre experienced a disruption to these cultural experiences at the age of eight when, despite his health visitor’s advice, he was sent to a special school in Birmingham – Birmingham is an industrial city in the center of England, and the UK’s second largest city. At special school, Pierre wasn’t encouraged in any of the arts, and had very little access to music, theater or poetry. Instead, he was only allowed to practice simple, mechanical crafts, rarely remembered playing or participating in creative play, and only played his creative games when he returned home to Wales. PIERRE:  Oh

no, I wasn’t taught any art [as a child at school]. I mean, the only thing I remember was doing some, some craft work with raffia. I remember that. But I can remember there were some flowers around the classrooms, which I noticed sometimes, but one of the funny things, and the sad things about going to school were, whereas I remember strongly the look of things back home on the farm, like the look of sunshine on flowers, my visual memories of school were very, you know, very dim indeed.

The way Pierre was taught at special school was very rigid and disciplined, and the environment was heavy and squalid in comparison to his home in Wales. Subsequently, although Pierre still loved learning, perhaps more so because of his experiences, he didn’t enjoy the experience of being at school. Nevertheless, although he was not allowed outward expression at school, Pierre developed a different inclusive capital, one which allowed him to find alternative ways to express himself creatively. More particularly, Pierre felt the most memorable experiences of his early education were what he described as emotional memories of kindness and cruelty. For instance, on his experiences of cruelty, he vividly remembered children standing around teasing him in English, which being a native Welsh speaker he thought at the time was a strange language. In another instance, Pierre described his experience of going to his local primary school when he was very young, and he was told about a ferocious school teacher from his village. The teacher was known for caning his pupils. When Pierre first went to his special school in Birmingham, he sat next to what felt like a stick. He later realized this was his teacher’s walking stick, as he had a very bad limp. However, at the time he remembered feeling it with trepidation. Pierre also didn’t feel any specific creative outlet through play at primary school, as he had done when he was at home on the farm, which made his

Ruth in New York and Pierre in southern England 111 experience of school “inauthentic.” Although he didn’t have a school uniform, he could not choose his clothes. This was not unusual at the time, he told me, as his era was not as child centered as it is now. What’s more, Pierre told me that he found that this experience made it difficult to be self-analytical. For instance, Pierre told me he felt he expressed individuality through an excellence in his studies, and he did particularly well in modern languages, history and literature. This success helped him maintain his self-esteem Even many years later, Pierre remembered being the best in his class at French language. Likewise, he told me that he was so successful in French language classes that his fellow pupils used to count the number of mistakes he made in a term because they were so rare – although Pierre also told me he didn’t like this, as he felt the other children were mocking him. After his first special school, aged about eleven, Pierre was sent to his first upper special school in Birmingham, which specialized in vocational education and was boarding. Then, after only a year at this boarding school, he was sent to a second upper special school also in the center of England, but closer to the border with Wales. This school was on the edge of a small historic city, and was run by a national charity. The school’s campus was surrounded by fields and hills. It was here that Pierre excelled academically. Like Pierre’s first special school, the regime at this new school was very structured and extremely strict, both academically and pastorally, but he took this for granted. This structure and strictness seems to be the way things were done in those days. Nevertheless, at his new school Pierre was given more freedom to be mobile, a greater degree of social independence and he didn’t have to walk in crocodile formation as he did when younger. At his new school, Pierre was also allowed to roam around within the school freely. After successfully graduating school, Pierre won a place at the University of Wales, which allowed him to move closer to home. He found this new university experience very exciting, and he felt a new adult freedom he had never experienced before. This also began a new phase in his learning experiences, based on a new phase of bonding. Importantly, university was the first time for many years that Pierre had peers without disabilities, and he had to live wholly independently. Unfortunately, as he’d developed a form of inclusive capital to survive in a special school and small village community, he found it difficult to negotiate, or work and socialize in this environment. Paradoxically, during our conversation he also told me that this experience was also a little too exciting for him, when he had spent so much time being raised in such a strict environment. Subsequently, he left university before he finished his degree, and applied for and gained his post in Nottingham. This move to Nottingham and his new job began his second phase of learning, one that was related to his experiences of bonding. At the Ministry

112  Ageing and disability in cultural heritage of Labor, he developed a strong circle of friends, amongst them the woman who became his fiancée. His fiancée most particularly provided new experiences, such as different environments he hadn’t experienced before. She also introduced him to fine art, something he had almost no experience of. Consequently, as his fiancée became his wife, and as he had a family and developed further confidence as an adult, Pierre developed new experiences and a new form of inclusive capital. More particularly, he sought out new learning experiences, and tried different learning situations he’d never tried before, including his first experience of sculpture, in his late thirties. PIERRE:  No,

I didn’t think about sculpture or painting at all [when I was younger] . . . As far as sculpture went, I, my first experience of sculpture was going to, was going to an exhibition in Nottingham about thirty years ago, and seeing some work there, and seeing a couple of pieces by Henry Moore. That was my first experience of sculpture.

Information – sourcing and using cultural information Pierre’s earlier education was important for him not only for the information it provided, but also as it taught him how to source information that could develop inclusion. The skill of sourcing information was particularly important when he left school and became independent of the institutions that provided welfare and a strict but secure social environment. University seemed to be a particularly sobering experience for Pierre, but it taught him he had to adapt socially, and it emphasized the importance of information in his new environment. As he was keen on intellectual activities, at which he excelled, Pierre actively felt he had to seek out information that provided new learning experiences, and develop a new sense of inclusion. This habit allowed him to adapt to new environments and social settings, an aspect of his inclusive capital that allowed him to thrive in his Nottingham social circle. For example, as Pierre recalled, on his wedding day, thirty-five years or so prior, he experienced his first memorable description of fine art. This experience came about because one of the bridesmaids at his wedding had a record of flamenco music, which had a painting by Goya on its front cover. On his prompting, his new wife described the painting to him in detail, and he questioned her about what it meant. PIERRE:  The

first experience I can remember coming across painting for instance was about thirty-five years ago, you know, when I’d just got married, and one of the, one of my bridesmaids had a record of flamenco music and, and there was a picture by, there was a reproduction of a painting by Goya on this thing. And I wanted to know what it was like. I think, I think until then I used to go to my in-law’s garden, and they had a very large garden, and [my fiancée] used to try and show

Ruth in New York and Pierre in southern England 113 me the, the shapes of leafs and stuff. I wasn’t really terribly interested at that time. But somehow this Goya painting seemed to interest me. Whether it was because the flamenco was exciting, possibly. Using his wife as a guide had become normal for Pierre, and he continued to use her help to develop inclusive capital. Years later, Pierre analyzed this painting by Goya as an intellectual exercise, relating his previous e­ xperiences to the information in the artwork, to help him understand his wife’s description. Below is an edited excerpt from my later report on Pierre’s description of the painting, from March 2004: The painting was set in Spain at the turn of the eighteenth century, and featured two courtesans. Pierre could relate to the colours and tones Goya used, as Goya portrayed shadows in semi-light, and when he was younger Pierre remembered being afraid of shadows – although Pierre felt this fear was irrational. As he and his wife discussed the painting, Pierre found Goya often used shadows and contrasting dark and light tones in his artworks, which caught his imagination. This sense of fear that Goya portrayed was mirrored in the painting’s subject, as there were French soldiers in the shadows that were about to attack the courtesans. Despite his emotional connection with the painting, Pierre also analyzed the image logically. Historically, the painting was set in the time of Napoleon’s invasion of Spain, and he felt the soldiers would be full of revolutionary zeal, with the courtesans being easy prey. Set in its time, Pierre also imagined that the painting represented the crushing of infamy and an indoctrination into a corrupt regime. In the painting, the courtesans were represented as being plump, which Pierre felt was appropriate to the period and the subject being portrayed, and it would be inappropriate to be thin. Pierre also felt it was appropriate the courtesans were not swathed in heavy clothes and had flamenco music as a backdrop. This image of the clothes and music complimented the heat of Spain. The story of the painting interested Pierre, as he felt it was an encapsulation of everything at once. The painting triggered experiences from sight, sounds, touch and history, which he found highly exciting. When I asked Pierre if he analyzed why he found these experiences exciting, he told me only that he felt that the painting was appropriate to his own intellectual studies. Places and spaces – experiences of, and loyalty to, institutions Pierre’s development of inclusive capital in places and spaces largely mirrored his experiences of inclusion and exclusion from bonding. Most importantly, although he rarely lived in Wales after leaving home for his

114  Ageing and disability in cultural heritage first boarding school, it was important for Pierre to keep the memory of his home environment in mind. During our conversation, Pierre told me his earliest memories were of growing up in a colorful environment. He remembered his mother encouraging him to look at the color of flowers close to, and becoming able to recognize the names of all the local flowers. This gave Pierre a passion for nature, particularly botany, in later life. As Pierre told me, “Leaving home, my strongest color memory is of having been got by my mother in particular to be interested in flowers.” This memory of a natural environment meant there was a schism and a sense of passive exclusion between the world he grew up in early on and his experience of his school environment. For instance, Pierre told me that he distinctly remembered that his first experiences of arriving in Birmingham were the smell of smoke and the sound of its transport and industry. Consequently, when Pierre arrived at primary school aged eight, he felt he had been “thrust into a completely new world.” Everything about his new school was alien to his past experiences and, looking back, he realized this was the time he found his home meant so much to him. PIERRE:  I think

that my strongest memory was the day that I was sent away to school, which I dreaded, of kneeling down and looking at the bluebells, and smelling them. To me that sort of symbolized, that was, symbolized the, you know, leaving what I sometimes thought of later as the earthly paradise. It wasn’t really, it was just a big step.

At his final special school, Pierre remembered being allowed to go to “the village,” which was a collection of shops near the school, although he was always escorted when he did so. During these visits, he remembered he could also go to the local post office and buy bottled drinks he enjoyed, his favorite of which was tangerine juice. Looking back, Pierre told me that he thought his feeling of freedom was a general lack of choice in that era, and few people felt they had control over the spaces they lived in. Schools were generally less child centered, and institutions influenced many of the decisions people made. In our conversation, Pierre also told me that he felt it inappropriate to put modern interpretations on old experiences; this was the way things were at the time and nothing could have changed it. One consequence of Pierre’s passive exclusion from creative activity was that it also wasn’t until he had a family that he felt a sense of inclusion in cultural spaces and places. It wasn’t until shortly after his marriage that he visited the sculpture exhibition in Nottingham. This featured many pieces, but, as I wrote above, he specifically remembered enjoying Henry Moore. After feeling a part of an arts space, Pierre developed enough confidence to regain a sense of inclusion in the arts he learnt as a young boy. For instance,

Ruth in New York and Pierre in southern England 115 during our conversation he told me it was after visiting museums for the first time that he wrote short stories, although these remained unpublished. Even at the time of our conversation, Pierre still enjoyed singing, especially in harmony with others, and he’d recently taken an Open University foundation arts course.

Ruth Ruth was sixty-six years old at the time of our conversation. She was originally from a small town in New Jersey, not far from New York City, although her family moved to Maryland when she was a child, as her father’s job moved. Ruth was born with a mild disability that affected her little, although her condition started becoming gradually more debilitating from the age of thirteen to the age of seventeen. As an adult, Ruth worked as a teacher and educational advisor in the US and internationally, and at the time of our conversation she lived in New Jersey, not far from where she was raised. Bonding – experiences of family and friends, and a disabled identity As with all the cases featured previously in this book, Ruth’s earliest bonding experiences were at home with her family, where she grew up in what can be described as a professional household. However, as her disability wasn’t considerable in her youth, Ruth didn’t have to leave home, and she didn’t attend a special school. Ruth was also the only member of her family with a disability. This meant that her experiences of bonding were settled, her early inclusive capital was that of a person without an impairment, and her experiences were relatively mainstream. SIMON:  And, did no one in your family RUTH:  No, no, no. Not even today.

have a disability?

Ruth’s social experiences at home were also fairly “normal” for a child from a middle-class family growing up in New Jersey: she played outside, she wasn’t protected too much because of her early impairment, and her impairment wasn’t strong enough to get in the way of socializing with others of her own age. Subsequently, Ruth also developed a circle of friends who had no disabilities. As she lived near New York City, she was occasionally taken into Manhattan by her family to visit museums or take part in other arts activities, such as concerts or plays. However, this wasn’t regular, and Ruth didn’t remember these visits being routinized. At school, Ruth also did art, music and literature in her normal course of study, but again these weren’t particularly subjects she valued over others.

116  Ageing and disability in cultural heritage During our conversation, Ruth told me that perhaps the hardest experience of her childhood was going through the transition of becoming what she felt was a disabled person. It wasn’t simply the physical process of becoming increasingly impaired that made her life difficult, however. Her more immediate problem was her changing social and cultural world, and the damaging of her existing bonds. For instance, at around fifteen years old, and as her impairment grew stronger, Ruth moved with her family to Washington DC, meaning she also had to change her school and circle of friends. Subsequently, she not only had to contend with her impairment, she also had to develop a new set of friends as a person with a disability, something she hadn’t experienced in New Jersey. This development made bonding harder, and Ruth felt socially stigmatized by this experience. Although Ruth did well academically at school in Washington, she still found it difficult to form an identity as a person with a disability, and therefore difficult to feel a sense of inclusion. Ruth’s difficulty was largely caused by a lack of knowing what it meant to be a person with a disability. It was only when she graduated high school and was preparing to enter college that Ruth was sent away to a rehabilitation center, and learnt she could feel comfortable as a disabled person. The catalyst for this new sense of inclusion was Ruth’s counselor at the center, whom she met early on, and with whom she seemed to bond quickly. RUTH:  I actually

spent June, July, August, I guess four months in a rehab center, in Alabama of all crazy places. Well, because it was, well Maryland at that time didn’t have a rehab programme, so it was between going to Philadelphia or going to Alabama, and the cost in Alabama for a month was what it cost in Philadelphia for a week.

Ruth’s counselor appeared to live what she felt was a “normal” life: he had a large family, he had a higher university degree, he spoke to her in a strict but civil manner and he didn’t patronize her. It was through this close and stable relationship that Ruth became confident about living a “normal” life as a disabled person. Subsequently, she kept in touch with the counselor for many years afterwards, and when she left university they became lifelong friends. RUTH:  I was

sent to a rehabilitation center after my senior year in high school, in the summer, and my counselor, and this was really profound for me, he was also disabled, he was educated, he had a master’s degree in rehabilitation. He was married. He had five kids. You know, and it said to me, I didn’t know any other disabled people. And, it said to me, “You can do stuff” . . . But he [the counselor] was a great role model. And I remember when I graduated from college, and I called him, and I said, “how are you,” and he said, “Oh, I’m having a terrible day, and

Ruth in New York and Pierre in southern England 117 ‘blah, blah, blah.’ ” And I said, “Oh my God, you’ve never talked to me like that before.” And he said, “Now, you’re a professional. Before you were a consumer.” [RUTH LAUGHS]. And we maintained contact for, you know, a really long time, till he passed away. Not only was Ruth’s counselor a good role model, providing her with a form of inclusive capital that allowed her a sense of confidence in her new identity as a disabled person. Her counselor also persuaded her to try college at the age her friends started, something that normalized her new life. At college, Ruth then met more students with disabilities, something that made her feel more confident that she wasn’t alone in her experience of education. RUTH:  But

then, you know, I started meeting disabled people, and I realized, you know, there are all types. And then, you know, my counselor said, “Look, it’s going to be tough, but I hate to see you waste a year of school.”

Ruth’s growing confidence in her ability to succeed academically also helped her develop new friends both with and without disabilities away from her secure home environment. This confidence grew further as she passed through university, where Ruth started to travel more independently as well as live away from her family. It was during this time that Ruth experimented with new experiences, including visiting museums with friends. For example, during our conversation Ruth told me one of her first experiences of independence happened during a visit to the Boston area to see friends who were studying there. When one of her friends wasn’t in her dorm when she and her other friend called, they called on two men in the opposite room to leave a note with their friend instead. On talking to these men more, the two men ended up taking them to the local Fogg Museum, an experience so exciting and enjoyable that it started Ruth attending museums more regularly. RUTH:  We went to the Fogg Museum with them, in Boston . . . And whoever

was in charge of the museum, he was taking the glass off sculptures, and I was freaking out, but I was so excited. Because, I was afraid I was going to knock something over. But I think that was my first experience as a disabled person interacting with art. And they had a very lovely Rodin exhibit, with his hands, which I just went crazy over. And it’s that kind of stuff that just really [made me interested]. Unlike Pierre, Ruth’s experience of bonding was more settled at university, and her family life after her experience at the Fogg Museum wasn’t so much a revelation. After graduating, Ruth trained as a teacher, studied for a master’s degree and developed her career teaching children with disabilities. Not long afterwards, Ruth moved to Israel to continue her career there.

118  Ageing and disability in cultural heritage It was in Israel that Ruth met what is now her ex-husband. However, she appeared not to talk much about this marriage during our conversation, and so it was unclear how this marriage affected her adult life. At this time, her important bonding experiences seemed to also revolve around her career as a school teacher, and her work with disabled children. At this point in her life, museums didn’t feature so much in Ruth’s plans. It was working towards what she felt was a greater good, and developing a more equitable system for people with disabilities that became important. At this point, Ruth felt museums were more of a place to visit rather than a place to develop inclusion. It wasn’t until much later that her bonding experiences in the museum became a reflection of her professional identity. RUTH:  Then,

I don’t know, for a while after that, I didn’t go to museums, I was eager to get my education completed. You know, I started teaching and I moved to Israel, and I set up programs for disabled kids, preschool kids, to help prepare them for integrated programs, or inclusive programs, in the public schools there. And I worked in a rehab center there, also, I trained teachers to teach kids who were disabled, and adults who were disabled. So, I really had a busy time. And I taught at the university level in Israel.     Then I married, and we came back here [to New Jersey] . . . I was asked to come into a museum actually, the [New River Museum]. They were planning an exhibit, and they asked me if I would be a consultant on the team. And that was because I was known by students who were part of that group. And they [the museum] thought it was important that someone with a disability, well it’s difficult for many people with disabilities, depending on the disability. Learning – cultural learning and ambitions for learning Ruth’s experiences of learning cultural capital can be broadly split into two periods: her early experiences of education, from home, school and college; and her learning experiences after formal education, when she herself became a teacher and worked with students with disabilities. As previously stated, Ruth went to public school throughout her school career, although received little support in class, even when her disability became much stronger. This wasn’t a big disadvantage when she was at school in New Jersey, as she had a close circle of friends and teachers who saw her disability progress, so could make adjustments. However, at fifteen years of age, Ruth told me her move to Maryland became “problematic.” For instance, in New Jersey, even though her school had 600 students, she knew almost everyone, whereas in Maryland she knew no one, and found it difficult to make new friends. What’s more, although her new school’s administrators had been told she had a disability, there was little physical or sophisticated support for her in

Ruth in New York and Pierre in southern England 119 class. Subsequently, Ruth felt more isolated and embarrassed about her disability. It was as if she stood out from her new peers, leading to a sense of awkwardness in her lessons. SIMON:  And,

did they know about your disability when you got to the school [in Maryland]. RUTH:  Yes . . . What they made me do, was take a desk and table from the back, and push it all the way to the front way over on one side. Sensing her difficulty in class and despite moving Ruth nearer her, her teacher allowed her to take study periods in the nurse’s office, away from the other students. Although this led to social isolation, Ruth found that the nurse recognized this wasn’t a good situation, “and that started a lot more help.” After interventions from the nurse, Ruth received extra support for her disability, especially during after school clubs. After this, her school enlisted help to teach Ruth to support herself, and they also arranged support to get Ruth so she could move freely from class to class. However, there was still little help for her in class, and Ruth still felt socially isolated. “So, it was not a great deal.” Ruth experience at college was little better than at school, and in some way worse. Although Ruth fitted in more socially at university and seemed to enjoy her experience more, she still found there were barriers to learning. For instance, although Ruth was taught science in school, she was banned from taking science subjects or entering labs at college – although it wasn’t clear whether this was because her college thought Ruth couldn’t do these subjects, or would present a danger to herself. RUTH:  So . . .

then I went to undergrad, and there were a couple of disabled people who had been to that school. So, there was some familiarity. But at that time, we didn’t have an Americans with Disabilities Act. SIMON:  Of course, no ADA. RUTH:  Ahh-ha. And so, I was barred from taking science courses, they didn’t let me take biology. SIMON:  So, this is an interesting one, so you took no lab courses? RUTH:  No! SIMON:  Did you take any arts classes at all. RUTH:  No! SIMON:  You’d had experience of art classes though, back in public school, when you were younger? RUTH:  Yeah! Yeah. SIMON:  Painting and drawing, and clay work? RUTH:  Right. Exactly. SIMON:  But not when you were older, in any way? RUTH:  No, not at all. And to be honest, that wasn’t my direction, so much.

120  Ageing and disability in cultural heritage Despite being passively excluded at school and college, Ruth’s early experiences of art and creativity at home and school meant that she enjoyed creative activity as an adult – she felt this was largely due to her positive experiences of creative activity as a child. Consequently, although she rarely practiced what are considered to be the fine arts after school, she enjoyed what could be described as folk arts, especially knitting and weaving. SIMON:  And do you enjoy art at RUTH:  Oh yeah. And I’ve done

all? art, a lot. I’ve knit some amazing things. And, I’ve crotched, and I’ve done weaving, I’ve done sculpting. You know, I’ve done a lot more hands on kind of art. SIMON:  Right, I understand. But, you wouldn’t describe yourself in anyway as a fine artist. RUTH:  No, no. I mean I do it for pleasure. I do it because I enjoy it. I find it interesting . . . [You get] a lot of interesting ideas when you get to the kids young. Ruth’s early educational success and the achievements this brought developed a habit for learning, and a new form of inclusive capital. This habit, Ruth told me, was a significant factor in her decision to become a teacher when she graduated. What’s more, Ruth’s relationship with her counselor also developed a further form of inclusive capital, that of a desire to work with students with disabilities. In this way, Ruth gained a sense of fulfillment through her identity as a person with a disability. Building on these earlier positive experiences, she realized that more children with disabilities needed positive role models in their schools, and more positive experiences of learning. Ruth’s experiences meant she became more committed to the inclusion of students with disabilities. At first this was working with what is termed “high-functioning” children with disabilities – that is to say, children with a disability that provides an impairment to some physical tasks, but can be helped with some support, and can succeed in line with peers without disabilities – but then also children with more profound disabilities. From this point on, Ruth worked practically to develop policies and strategies of inclusion. RUTH:  I taught

in Israel, I taught in the rehab center . . . And then, when I came back to the US, I worked with the babies with all kinds of disabilities . . . SIMON:  Was that peripatetically? Or in a school? RUTH:  No, it was a program for infants. We have an early intervention program. And these are kids, you know, some of them are not very functional at all. I would hold their little arm and it would just flop down. And some of them were much more ambulatory and so forth. But, you

Ruth in New York and Pierre in southern England 121 know, I did that for a while. And, where did I go from there. Oh, I guess I did go back to writing curriculum, and doing training for teachers to talk about disability in a way that was positive, to create libraries with books which depicted children and/or adults with disabilities. And this was, you know, very on the minds of people at that time . . .     I mean, I’ve always worked, and I’ve done a lot of work around women’s issues in general, and of course women with disability in particular, and across disability. Ruth’s work in education also included developing policies to make museums more inclusive, helping them make their teaching provision and exhibits more accessible. Ruth told me she enjoyed this activity, as it brought her back in contact with institutions like the Fogg. Having become more known locally around New York for this work, Ruth was invited by larger museums to work with them and sit in on committees and panels engaging with accessibility. During our conversation, Ruth seemed to take her role of encouraging access importantly. She not only relished working professionally in this field, she also tried to encourage other people with disabilities to visit museums. For example, Ruth told me about one friend who was reluctant to go to a museum because of previous bad experiences with her family. Subsequently, Ruth took it on herself to take the student to a museum she was working with, and show her around herself. RUTH:  Well,

in 1999, I was doing a presentation for the [Large Museum], and my colleague and I were sitting and laughing. My friend came from a very big family, and she said “the worst torture is for me to go to a museum, because they just drag me around.” And, of course, that had not been my experience, and so we went around.

Information – sourcing and using cultural information Ruth’s early use of information as a means of developing inclusive capital was largely related to her schooling. As she attended museums with friends and family, she had no reason to look for information to attend museums or schools. Subsequently, and in common with most of the participants I talked to, Ruth rarely became an active consumer of information as a child. However, after graduating and moving into the field of policy, Ruth found herself having to find a new skill of inclusive capital, that of producer and developer of information. For instance, Ruth told me that about ten years previously she had been invited to take part in a delegation to Uzbekistan. The purpose of the visit was to develop inclusion for women in the country. However, Ruth found that her role also became to develop inclusion for women with

122  Ageing and disability in cultural heritage disabilities, as they were concerned these women were becoming left out of their debate. RUTH:  But

they were not terribly organized, so this colleague [who also had a disability] and I, we went, and we spent three weeks there. And, we just had this amazing, amazing experience. Probably one of the most incredible experiences of my life. Because young people, we helped them figure out what their issues were, what were the most important things.

During her visit to Uzbekistan, Ruth also managed to discuss and promote public services that the local women with disabilities thought were important. These issues included education, healthcare, transportation, and laws amongst many. Ruth believed that addressing these topics would provide the women with opportunities for employment and social inclusion. Ruth told me that, based on her own previous experiences of being a passive receiver of support and information, she wanted the women to discuss what they felt was most important. From their long list of general topics, Ruth encouraged the women to pick five of the most important that they could address, and then groups formed around the topics they wanted to discuss. RUTH:  And,

I have to tell you, at the end we did a presentation for funders of all these amazing people, and the women did it themselves, we didn’t do anything – we prepared them, but we didn’t do anything – and they were fabulous . . . So, it was really amazing.

This trip seemed to have a profound influence on Ruth, and she talked about it a great deal during our interview. Ruth also told me it forced her to believe just how powerful discussing and explaining her own experiences could be. For example, Ruth explained the case of an eighteen-year-old Uzbek woman who was deaf and who didn’t want to participate in the group. The young woman’s refusal to participate was most intense when the women with disabilities were discussing how important it was for them to work together, to help make their lives more accessible. The young woman called out to Ruth and explained that she didn’t feel comfortable talking with nondeaf women, as she’d always spoken through a sign language interpreter. After the session, Ruth told me she called the woman over and explained that she was speaking to her through two translators, one Russian and one Uzbek, which also made it difficult for her. However, Ruth explained the issues they were discussing were too important to ignore, and they both had to make an effort to explain their points. After this conversation, Ruth noticed that the young woman’s disposition to her changed, something that she had gone through with her own counselor many years before. RUTH:  So,

after that I noticed that if I was looking for a chair, she’d be right there pushing it under my butt. And, at the very end, we always do

Ruth in New York and Pierre in southern England 123 this really, to me it’s a bit schmaltzy, what we do is we take a big ball of yarn, and I would hold it, and I would start it as a group leader, and I would say, “I’m going to throw this to so and so, because she helped me understand ‘blah, blah, blah.’ ” And then it goes zig zagging around, and in the end, it’s like a string, and it’s like a web in the middle. But, as this young deaf woman received the yarn, she threw it to me, and she said, “I am throwing this to Ruth because she taught me I can work with women with other kinds of disabilities beside my own.” Ruth also told me that developing her own strategies of using information in museums also helped her to soften a great many of the access issues she faced. More particularly, as she found it physically difficult to follow tours, she often altered her habits to find autonomous information she could enjoy in the galleries at her own pace. For example, Ruth told me about her first visit to the Louvre, Paris, with her husband during their marriage. Ruth’s husband did not have a disability and often wanted to follow full tours of museums they had previously visited, whereas she could only manage a limited number of galleries. In these circumstances, Ruth thought it only fair that he was able to do continue with the tour alone and she stay in the last exhibition they visited. As she was left alone, Ruth took the opportunity to take out an audio guide of the gallery, and sat and enjoyed the information from her tour again. RUTH:  In

the Louvre in particular, it’s just awesome, you learn about it, you hear about it, and it’s like amazing to be in this institution that has such prominence in the art world. So, you know, it’s like a really good experience, and my ex-husband had more time, and I had time to review this again.

Places and spaces – experiences of, and loyalty to, institutions Ruth seemed to be rooted to her home during our conversation, and had particularly enjoyed growing up in a safe and comfortable environment in New Jersey. However, when she moved to Washington DC as a teenager, she felt up-rooted, and this affected her sense of inclusion in her new space and place. This was largely why, after many years of traveling, Ruth returned to New Jersey, where she felt most comfortable, at first with her husband and then by herself after years of working. This situation changed after college, and largely because of her early experiences of traveling with her family, Ruth developed a sense of confidence about working in new places. This led her first to move to Israel, where she knew people and which she’d known before she moved there, and then temporarily to wholly new parts of the US after her marriage finished. For instance, Ruth told me although she’d never lived alone in an unfamiliar place, she was offered the opportunity to work temporarily for an organization she’d known of previously on the Pacific coast. Ruth particularly

124  Ageing and disability in cultural heritage admired the organization as it supported children from a number of different countries, training them to become leaders of disability movements in their own countries. After traveling to different countries for previous roles, Ruth found this a challenge, but decided to take a risk and spend time in the West by herself for a while. RUTH:  Well

I was working for an organization that was doing curriculum development and teacher training. But, they had some budgetary crisis, and I managed to land this fabulous job out in Ocean City. I led two groups, and had a great time . . . I was a group leader there for various summers. And it was really to teach some of these folks to become leaders in their countries for disability rights, to talk about the disability rights movement, and leadership, and laws, and all that . . . I also did some travelling with them. I went on a professional exchange to Japan.

Ruth’s sense of confidence and maturing inclusive capital as she grew into adulthood also affected the way she engaged with cultural heritage, museums in particular. What’s more, Ruth told me her earlier experience at the Fogg Museum when she visited Harvard changed the way she saw museums. Instead of a passive visitor, she actively sought out different museums for herself; instead of following tours because this was what she was offered, she chose the exhibits she felt were interesting and relevant to her. Although when she first became disabled she told me she saw such places as somewhere she’d not go to alone, this new experience made her think of going to new museum spaces as an adventure. SIMON:  So, when you first became disabled, did you go to museums? RUTH:  Not really. I don’t know whether I was completely disinterested

but, you know, it was a really difficult adjustment. And I just think at that time, it would have been over-whelming, as a disappointment not to participate. And so, when I had this experience at the Fogg Museum, in my twenties, it was just wonderful. And, it was like this whole world just opened up . . . And, I mean, I’ve had some really interesting experiences, just when museums were beginning to accommodate folks with disabilities.

Discussion Although Pierre and Ruth were both born with impairments, because Pierre’s was more significant earlier on, their historical and cultural experiences were different. What’s more, the environment and setting of their upbringing also gave them radically different experiences of the arts, which affected their preferences as adults. This led both cases to develop different forms of inclusive capital.

Ruth in New York and Pierre in southern England 125 For instance, Pierre celebrated the literary and musical arts at home as part of his early bonding experiences. Pierre didn’t only practice these arts with his family through communal singing and listening to members of his family performing. He also studied them academically, by listening to his brother discussing the plays of Shakespeare. At his own admission, Pierre didn’t have much interaction with the visual arts, as Welsh culture wasn’t strong in this field at the time – this is a national tradition dating back millennia. What’s more, Pierre also didn’t have access to the fine arts when he went to his special schools in England. For this reason, as he came into adulthood he had no experiences of institutions such as museums, and they did not figure in his sense of inclusion. Consequently, the cultural form of inclusive capital Pierre developed remained in the performance of poetry and other forms of literature, and the understanding of fine art academically. It also meant Pierre associated academic achievement with a sense of achievement, and this achievement with a sense of inclusion. Subsequently, when he eventually came across paintings he transferred his academic habits to interact with fine arts as an academic activity, both through viewing and performing. By contrast, Ruth had a relatively “normal” suburban upbringing until her mid-teens: she grew up in a family without disabilities, and was largely treated as any other member of the family; she grew up in New Jersey surrounded by cultural opportunities and close to New York City, and visited museums occasionally; and she attended and academically succeeded at public school, where she knew most of the other students, who were without disabilities. These experiences provided Ruth with what can be considered to be a “normalized” form of inclusive capital, and subsequently she associated her home in New Jersey with a sense of inclusion. The schism in Ruth’s inclusive capital only came when she moved from New Jersey to Washington DC, when she had to change her identity and struggled to feel included. Socially, Ruth found herself in a school where she initially knew no one, and when she started making friends these students only knew her as a girl with a disability. What’s more, the school’s staff saw and treated her as a student with a disability, and treated her as a different form of student: first they moved her close to the front and to the side of the class, isolating her physically; then she was allowed to spend study periods with the nurse, yet again moving her away from her peers and making socializing harder. Despite her developing impairment, Ruth’s identity was still ambiguous: she realized she had an increasing disability, but didn’t know how that left her in terms of what she could achieve. This issue of identity was something she struggled with, until she finished school in Washington DC. It was only after school that she attended a rehabilitation center and met a role model, which could provide the inclusive capital of a reference point that showed her what she could achieve. However, after developing this inclusive capital it was as if a new identity, one that had been suppressed before, was unleashed. With this new

126  Ageing and disability in cultural heritage personality, Ruth believed she could achieve at college, become a teacher and most importantly become a role model herself. This led Ruth to take risks, leave home and travel to different countries to work with children and women with disabilities. It also led her to take risks by visiting new places in the US and meeting with people she didn’t know. It was one such experience with new people at the Fogg Museum independently for the first time that led Ruth to become excited and find a sense of inclusion in museums again. In time, this also led Ruth to work with museums, to encourage other people she knew with disabilities to attend museums and to help develop policies with museums to make them inclusive. Subsequently, Ruth developed a different inclusive capital, one that problematized academic action, one that could form a political, positive and inclusive disabled identity. This being said, there are inclusive capitals that Ruth and Pierre shared as people who were born and aged with strengthening disabilities on a deeper, meta level. Most importantly, both Ruth and Pierre had a need to fit in with the broader society that they had bonded with as younger people. Most importantly, these earliest bonds brought them back to what made them secure in childhood: Ruth made it back to New Jersey, and Pierre wrote short stories and created paintings based on Welsh poetry. So, how do these experiences differ from people who acquire their disabilities later in life? More importantly, did their life-long experiences of not being disabled cause a schism in their identity? In the next chapter, I again examine these questions through the experiences of two older people from southern England who developed their disabilities in late adulthood.

Notes 1 I use the phrase public school in the American context in this book, as public schools in the UK refer to elite private schools. 2 Hayhoe (2012) 3 See discussions of these theories in Hayhoe (2008, 2017) 4 Hayhoe (2008)

References Hayhoe, S. (2008). Arts, culture and blindness: Studies of blind students in the visual arts. Youngstown, NY: Cambria Press. Hayhoe, S. (2012). Grounded theory and disability studies: Researching legacies of blindness. Amherst, NY: Cambria Press. Hayhoe, S. (2017). Initial analysis from a grounded methodology study of risk taking and avoidance by students with visual impairments during visual art projects. MuseumEdu, 5, 135–154.

8 Experiences of late disability – Tallulah and Don in western England

Introduction As the previous three chapters show, growing up with a disability can have a profound impact on a sense of inclusion in cultural heritage. The cases in these three chapters exemplified the difficulties experienced during transitions from family environments to those separated from friends and what they were brought up to believe was normality. Most importantly, this transition can affect the value put on participating in cultural activities and attending cultural heritage sites. When a person with a disability has issues with mobility, traveling to a museum isn’t just a treat it’s a rare occasion where they can enjoy the existence that others take for granted. Equally, if you live in a residential school, a trip to a museum, National Park or monument can be a rare chance to see, bond and have fun with family and friends. As I argue in this book, the transition from security and firmity is arguably not the only problematic transition people with disabilities must undergo. Perhaps the most dramatic and important transition is a transition from a non-disabled identity to a disabled one. If this transition is early enough, it’s possible to understand oneself as having to adapt, and if this transition happens at school, it’s possible to build a life that adapts to a new sense of inclusion: a career can be built, a spouse married and children can be raised as a person with a disability. There is evidence in the literature to suggest that it is not the physical fact of the disability that is the most significant issue in this transition, but the transition from the non-disabled or disabled identity itself. There is also evidence to suggest that the later transitions of identity happen, the harder it is for people with impairments to adapt to a new identity – perhaps choosing to keep their older identity as a person without a disability and attempting to remain active in cultural practice. For example, in Philosophy as Disability and Exclusion I discuss two cases of males given sight for the first time in their fifties:1 the first case was by the psychologist Richard Gregory2 and the other by the neurologist Oliver Sacks.3 Gregory’s participant in his case was given the name SB and

128  Ageing and disability in cultural heritage Sack’s participant was named Virgil. The main focus of the participants in both Gregory and Sacks’ studies was their ability to adjust to vision, when they had only previously touched objects and had a minimal understanding of vision. However, although the greatest change to the immediate understanding of SB and Virgil’s sensations was their perceptual change, what was more important to their sense of inclusion was their change of identity and character. This change of identity became so important that both SB and Virgil decided to reject their new visual world, deciding instead to keep on touching objects around them and sitting in darkened rooms whenever they could. For both Virgil and SB, this inability to cope with their sudden change turned quickly into depression: for SB, this depression was tragic and fatal, and he died not long after gaining his sight; for Virgil, this depression was equally substantial until he developed a further eye condition, lost his sight again, and recovered his previous non-visual identity. Such schisms, tensions and changes of identity as that of SB and Virgil, are not simply restricted to transitions from non-sighted identities to sighted ones. Similar case studies are found with other sudden forms of disability involving so-called phantom limbs. For example, in his book Phenomenology of Perception, Maurice Merleau-Ponty4 describes an instance of a man who loses his leg, and whilst lying in his hospital bed feels the need to scratch the space where his leg once was. So, does this change from being a non-disabled person to a person with a disability produce a change in the way a person interacts with their cultural heritage? The following two cases of Tallulah and Don address this question. Reviewing the study of Don and Tallulah My conversations with Don and Tallulah were recorded in the west of England, and I asked them to participate because they represented the profile of many older people with disabilities: they were past the age of retirement; they had lived most their lives, had careers and raised families without disabilities; and their impairments were largely forms of impairments associated with older age. However, despite their similarities there were four significant differences between both participants. Firstly, Tallulah and Don had different social and cultural experiences of gaining their impairments, and of becoming impaired at different ages. Secondly, both their lives took different paths during adulthood, with Don traveling widely for work and Tallulah staying close to where she grew up, which affected many of their cultural experiences. Thirdly, both Tallulah and Don had different exposures to museums as children, and different experiences of what we would describe as heritage. Fourthly, although both Don and Tallulah started higher education in middle age, their motivations and courses were guided by different cultural life choices.

Experiences of late disability 129 I knew Tallulah and Don before asking them to take part in this study, and asked them to volunteer specifically for this book, as I knew they both had a passion for cultural heritage: I knew Don was a collector and Tallulah studied art history. At the time of asking Don and Tallulah to participate, I was wary that this knowledge of their background may affect my conversation with them – in previous studies of more contentious issues I considered the issue of going native, where I could become an advocate or become influenced emotionally, and therefore too sympathetic to the plights of my participants.5 However, as I was investigating self-directed cultural activities, I felt that my writing would not be influenced by any political issues or personal beliefs through their answers or my writing – at least, not more so than any other participant would. Subsequently, I was confident I could be objective about our conversations, and how I reported them, and any empathy I felt could be taken into account by the reader. I recorded my conversation with Don in May 2017 in a local hall on a morning when it was not being used for community activities – Don was one of the patrons of the hall, and suggested the venue – and with Tallulah at the home of her son in June 2017. As with the other cases, I told Tallulah and Don about the study and provided informed consent for the study and for the use of their cases. As they were my last cases, and I was partly into writing this book at the time, I also explained the topic and background of my writing and how their chapter would fit the study as a whole. As with the previous cases, I again used a similar set of open questions as conversational prompts for both Tallulah and Don, as I had for the cases in the previous chapters. I also allowed Don and Tallulah to provide their own examples of engaging with cultural heritage, and encouraged them to give only as much information about their backgrounds as they felt comfortable providing. My conversations with Don and Tallulah were both recorded on my university tablet computer using diary-recording software, which allowed me to type notes and keep the voice files secured in the same file – the tablet was kept securely at home or in my office and had passcode protection. To make the recordings more secure, I then copied the notes and MP3 files to my university laptop where I could store the recordings on a more secure system and destroyed the originals. As with the other cases, all the notes on Don and Tallulah were created and stored using their pseudonyms, in order to decrease the chance of accidental identification. I start these two cases with Tallulah.

Tallulah Tallulah was eighty-four years old during our conversation, and lives in a quiet, rural area of southern Somerset, not far from its border with Devon – Somerset is a county to the south-east of Wales where it meets England, and

130  Ageing and disability in cultural heritage is bordered by the Bristol Channel and Atlantic Ocean on its western coast. Tallulah is a widow, and has three adult sons and numerous grandchildren aged from adulthood to toddler, all of whom live in southern England and the English Midlands. Tallulah is from southern Gloucestershire and is the youngest of four children – Gloucestershire is a county in western England, which borders the south-eastern corner of Wales and the Bristol Channel. When she was growing up, her father ran two shops and her mother occasionally worked in the shops and was a full-time home-maker. Tallulah didn’t move far from her parents when they were alive, and has lived in either Gloucestershire or Somerset all her life. Tallulah developed her first impairment when she was fifty-two years old, immediately after her husband died – she remembered it started on her left side, and it was quite startling. As she explained, “It was almost as though it was the shock.” Then, over the course of the next decade or so, the impairment gradually became apparent on her right-hand side too. After an initial reluctance, Tallulah saw her local doctor about her impairment and was eventually referred to a nearby hospital. Although these feelings about her impairment left her uncomfortable, she didn’t feel worried about seeing her doctor, and eventually found it quite a relief when she was referred to the hospital. After her first appointment, she was prescribed an aid for her worsening left side to suppress its impairment. Eventually, and after many years of monitoring its deterioration, her doctor also prescribed a second aid for her right side too. Significant to her story, Tallulah’s mother had a similar impairment, as did her two brothers and her sister. Tallulah thought her mother’s impairment had also shown itself in middle age too, although it became severe and then profound in old age, as did her brother’s and sister’s impairments. Although Tallulah came to terms with her impairment, and had aids fitted to help her – as her brothers and sister did – Tallulah’s mother never came to terms with hers, and had refused all forms of treatment or support. As she aged, Tallulah also developed other impairments that restricted movement, and meant she found shopping, general movement, and standing for long periods difficult. Given both her impairments, however, Tallulah still refused to acknowledge either impairment as a disability, and she refused to identify herself as a disabled person. SIMON:  Did you ever think of yourself as a disabled person? TALLULAH:  No, no! I’ve never thought of myself as a disabled person . . . SIMON:  Do you think of yourself now as a disabled person? TALLULAH:  No [laughs], not in the slightest. In fact, can I say, someone the

other day I was talking to [a friend], they were saying they had to have an [aid], and I said “oh,” and she was very worried about it, and I said “oh, there’s nothing to be worried about, I’ve got two [aids].” And she was absolutely shocked. She said, “I had no idea.”

Experiences of late disability 131 SIMON:  Do you think of [both impairments] as a form of disability? TALLULAH:  No, I don’t. SIMON:  So, what do you think of these things as? TALLULAH:  [Laughs] Just a nuisance. In fact, no I don’t think it’s a problem

at all, I think it’s something that’s got to be put right, quite honestly. Bonding – early school and family experiences Tallulah’s approach to the fine arts, historical houses and gardens as an older person seems to be largely guided by her experiences of childhood and her family, particularly those with her parents. This experience of artworks was later important as a form of bonding when she suffered a threat to her well-being and confidence after her husband died and her children left home. It was at this point that she reached back to what she knew when she was younger, to make her feel a sense of belonging. For instance, some of Tallulah’s strongest early memories of home were being surrounded by paintings and ceramics in almost every room, and of talking about works of art, particularly paintings. What’s more, Tallulah often remembered being taken to public art galleries and houses in Bristol, which was the nearest big city to her home, by her parents from about the age of four. During these visits Tallulah remembered her father was particularly taken by the paintings he saw. Tallulah was especially close to her father. TALLULAH:  We always had paintings at home. SIMON:  Did you ever talk about art. TALLULAH:  Yes, we used to talk about paintings.

Father was very interested in art. SIMON:  What kind of art do you remember? TALLULAH:  Well, mother had a beautiful painting of a convent in her sitting room. That was a lovely one . . . But we used to go to the art gallery in Bristol quite a lot. And, of course, they changed their art quite often, and so we used to go to various exhibitions. Later on, Tallulah’s eldest brother Andrew also took her to public galleries, gardens and historical houses in Bristol and Bath, when he was around twenty-five years old and she was around fourteen. These visits were also special for Tallulah, as Andrew was in the army at the time and fighting in the Second World War, and she rarely got chance to spend time with him. Although Tallulah visited museums, old houses and gardens as an adult too, often taking her boys to galleries and houses in Bristol that she was taken as a child, these visits became more important after retirement. Importantly, these memories of her early visits became an essential means of bonding later on. After retirement, Tallulah stayed in her family home until the early millennium, when she found the size of the house and land too much, and the area

132  Ageing and disability in cultural heritage too busy for her liking. She eventually moved to her current, smaller home with a smaller back-yard in a quiet village in the new millennium. On moving to her new home in Somerset, the only other people Tallulah knew in the area were a couple who were long-term friends, a childhood friend and her older brother, who were all within half-an-hour’s drive. Consequently, she went about joining all the societies she’d previously known, such as the local gardening club and the Women’s Institute – the Women’s Institute is a society for women in the UK dating back around a century, and is designed to give women support in their local community. Her local gardening club was particularly useful as a way to bond with people, as she got to visit gardens as well as attend meetings. TALLULAH:  Oh

yes, we have lovely times visiting gardens. And we go to old gardens in Cornwall. Well, all over actually. And we even have holidays . . . It would be nice to go with the family, but I enjoy going with the people I go with, because it’s very friendly and I suppose a way of making more friends for me. I’ve got lots of friends in Somerset.

Tallulah enjoyed participating in activities she’d early experiences of, particularly those indulging her interest in the fine arts developed early on within her family. Subsequently, through friends she made in her early days of attending the gardening club, Tallulah was also told about the National Association of Decorative and Fine Art Societies (NADFAS), and immediately joined. NADFAS became a significant part of Tallulah’s life, one that didn’t just allow her to meet new friends and mix with existing friends or visit lectures or attend visits. NADFAS afforded Tallulah the opportunity to feel part of a world that she’d had when she was younger, one that gave her a link with her family and friends and the sense of belonging that provided. SIMON:  And what do you like about NADFAS? TALLULAH:  Well, it’s very interesting lectures and

being with like-minded

people. Learning – cultural learning and ambitions for learning Tallulah was brought up by her parents to believe that education was important, either as a student or as a teacher. Consequently, although she often took jobs for financial reasons at both ends of her working life, formal learning, education and teaching always seemed to be an important measure of Tallulah’s cultural as well as emotional development. Learning also seemed to have three more uses for Tallulah: firstly, it allowed her to indulge in her passion for the arts; secondly, it allowed her to fulfill her ambition of working with children; thirdly, it provided essential

Experiences of late disability 133 human contact after her husband died, her sons left home and she was coming to terms with her impairments. Subsequently, Tallulah came to see education as a way of life. Tallulah attended regular schools until the age of eighteen, graduating well in 1951 from a combination of language, math, humanities and natural science exams. Tallulah then attended and successfully graduated from secretarial college, and was a secretary until her first child was born when she was twenty-nine years old. Tallulah’s last secretarial job was in a small rural primary school – a school teaching students from four to eleven years of age – a post she took not long after getting married to an insurance underwriter in the early 1960s. This last job allowed her to fulfill her ambition of working with children, and Tallulah found she was sometimes asked to teach when the school needed cover. TALLULAH:  I used

to stand in if one of the teachers was away. There were only two teachers in the school, and if one was ill I used to stand in and be a teacher.

In the next decade, and following changes to her husband’s job, Tallulah moved twice more: once more in northern Gloucestershire and then to northern Somerset, her latter home being closer to her mother. In this decade, Tallulah also had her second and third sons, and became a home-maker to raise her growing family. Shortly after moving to northern Somerset, and when her youngest son was three years old, Tallulah fulfilled another ambition and began working in a local pre-school playgroup. Her youngest son attended this playgroup before reaching school age, and Tallulah was able to study child psychology at a local college. A few years on, Tallulah and a friend were able to start their own pre-school playgroup, renting rooms in a local sports club for their business. From the early 1970s, Tallulah’s husband had a series of illnesses and physical and sensory impairments, until his death in the mid-1980s. After her husband’s death, and to earn enough money to support her household, Tallulah went on to work as an administrator in a local office. She eventually finished this job when she could afford to retire and she had less expenditure – her three sons had their own jobs by this time and had left home. It was at this stage in her life, that inclusive capital became particularly important to Tallulah, and it was at this time that she turned back to education to study the arts. After retiring, Tallulah took a part-time degree in the Philosophy and History of Art, which she studied at the Open University partly through correspondence and partly through lectures – the Open University is a national government-sponsored university with local branches

134  Ageing and disability in cultural heritage throughout the United Kingdom. She eventually graduated at the age of sixty-three in 1996. SIMON:  What made you want to study TALLULAH:  I just wanted something to

  

art? think about: I enjoyed going to galleries, and I used to enjoy art, all sorts of art, not just modern art, art from beginnings really. And, I just thought it would be rather nice to study the subject. And it was the time I’d given up my job, and I was on my own because [my youngest son] had gone to university. And, I just felt that I just needed something positive in my life.

After graduating, Tallulah continued to work for the Open University: as an exam invigilator; and as a teacher on a starter course, whose curriculum was based on study and writing skills for those students who left school with few qualifications. These posts lasted until Tallulah was in her mid-seventies, and became more than a way of earning money. These posts allowed Tallulah to stay in touch with the Open University, an institution that by now gave her a sense of inclusion. TALLULAH:  I used

to sit with people being examined, and I also used to do starter courses. I used to sit in, in Bristol. I used to go before they started, or at least before I started as well, but Open University before they do the actual starting of their course, they have what they call a starter course. Which is someone who’s going to tell them all they’re going to learn. I taught that!

Information – sourcing and using cultural information During our conversation, it seemed that the personal nature of information and discovering information first-hand seemed to be important to Tallulah. Most importantly, she often found the search for information would involve bonding activities that grew to become part of her sense of belonging. In this way, practical information, such as routes or locations of entrances, were of little importance to Tallulah, it was gaining information for its cultural exclusivity that gave it value. Consequently, Tallulah often felt information held an increased value if she obtained it directly from those who were planning events or exhibitions, or she had to work hard to find it. What’s more, Tallulah became uninhibited and gained confidence from searching for sources of information from new friends, often traveling by herself to join existing networks and earn information. For example, Tallulah joined the Royal Academy (the Academy) in 1987 as a member, not long after her husband died – the Academy is a preeminent British fine arts institution founded in London in 1768, to exhibit and

Experiences of late disability 135 encourage artists. Tallulah often used to travel to London to visit the Academy alone when she was first a member, or she used to go with a long-time friend of hers who also had an interest in the arts. Through membership of the Academy, Tallulah was frequently sent regular magazines and allowed to attend a members’ room, somewhere she could also read about special exhibitions and events. Based on her membership and attendance, the Academy also sent Tallulah invitations for exhibitions, such as private viewings and lectures. More importantly, Tallulah also described how she found value in gaining information about the fine arts from her visits. TALLULAH:  I enjoy

going to the Royal Academy. I enjoy the art, and the changing exhibitions. I didn’t always like all the exhibitions. They weren’t always to my liking, but I always chose the ones that I liked.

Significantly, Tallulah’s impairments haven’t restricted her desire for information, even though it initially made it harder to come by. As she told me during our conversation, if anything her impairments made her more determined to attend events such as lectures and meetings, suggesting that her cultural desire to be part of events outweighed her physical condition. Nevertheless, Tallulah’s later physical impairment now restricts her mobility, and frustrates her attempts to attend London events in person. Subsequently, Tallulah has had to adapt her habits to stay in touch with the art world she loves so much, and her membership of groups such as NADFAS has taken on a greater importance. SIMON:  And, do you wish you could go [to London] more? TALLULAH:  Yes, I do. And because of my [physical impairment]

now, I don’t have the confidence I used to have travelling alone to London. SIMON:  So, the groups you’re a part of in Somerset, are they more important now [you can’t get to London]? TALLULAH:  Yes! SIMON:  And, would you ever think of going to a place by yourself anymore? TALLULAH:  Oh yes, I do frequently outside London. As important to Tallulah as her membership of NADFAS, is her adaptation of practice as she learns to reduce the worst effects of her impairments. This adaptation is important, as the attendance and pleasure she gets from these events reduces the threat to her sense of inclusion since she stopped attending the Academy. For instance, although she doesn’t like sitting in the first row at these events, she has moved further forward to make it easier to take part in the lectures. TALLULAH:  My

aids are extremely good and I’ve never had a problem. But I do sit about three rows back . . .

136  Ageing and disability in cultural heritage SIMON:  And what do you get out of these lectures? TALLULAH:  I get great pleasure out of them. I learn things

that I didn’t know before about various artists. I enjoy learning, I suppose you could say. And most of the people I’m there with are my friends.

This being said, Tallulah’s loyalty to the Academy means she still feels that it’s important to remain a member, even though she hasn’t physically been there for more than five years. Apart from this sense of belonging, Tallulah also receives the invitations and the magazines with news from the art world she enjoys reading – although she still feels some regret about not being able to visit in person. TALLULAH:  I get

their magazine every so many months. Three months, it is. And when there is a really nice exhibition on I miss not going.

Places and spaces – experiences of, and loyalty to, institutions As with her search for information, Tallulah’s loyalty to places is an important part of her sense of inclusion, and to the maintenance of her confidence since retirement. What’s more, as with her attitude to information, she also showed great loyalty to the spaces and places of institutions she bonded with, a loyalty that provided a sense of belonging and self-confidence. For instance, almost immediately after moving to her new home in southern Somerset, Tallulah came to volunteer for a nearby stately home, Earl Field,6 owned and run by the National Trust – the National Trust is an important charity in the UK, which owns and looks after important historical buildings, monuments and sites. After working for the Open University, and as she was developing new friendships such as Mercedes, who’d go on to become a close friend, Tallulah used her voluntary position to cultivate a sense of belonging. TALLULAH:  [I

started working at Earl Field] immediately after I moved to Somerset. I went to coffee with Mercedes, and Mercedes told me she went to Earl Field, and she told me they needed volunteers. And she said, “Would you be interested?”

As she’d been a visitor to many National Trust houses and gardens as a younger woman, Tallulah had respect for what the institution represented. Subsequently, she saw the chance of working in one of its houses, continue learning and meeting others with similar interests as an opportunity to improve her confidence and feel included. However, unlike her post at the Open University, Tallulah was granted a greater degree of intellectual autonomy and her own space, whose artworks she was tasked to describe to visitors. TALLULAH:  Well

we had to go down, and we had to go into a special room and were told all about it, and we were given a book that told us all

Experiences of late disability 137 about the history. But then you were just sort of let out and you were on your own. Tallulah told me she’d initially hoped to work with the artworks at Earl Field, with the hope of discovering stimulating pieces similar to those she’s studied during her degree. However, after learning more about the artworks, she decided that apart from some interesting and rare ceramics, and artworks she described as “way out,” Tallulah felt the remaining pieces were historically unimportant. Despite her initial disappointment, Tallulah eventually became interested in the house itself, finding that she enjoyed explaining the rooms and the history of the building and land more than the artworks. More particularly, Earl Field’s architecture reminded Tallulah of the house she’d owned with her husband and raised their three boys in, a place she’d not long left at the time and one that represented her family – although Earl Field is on a much larger scale. Since this time, Tallulah told me she now likes being tested by visitors’ questions, and the pride in feeling a part of the house’s culture and history. TALLULAH:  The

house is more interesting than the art. It started out being the artworks were the most important thing, but I think now the house is more important, because it’s so interesting and bits of it are so unusual. SIMON:  Do you feel emotionally attached to the house. TALLULAH:  Yes, I do, because I’ve been going there so long. And I enjoy telling people the history of the house. SIMON:  Do you feel you’re part of the house? TALLULAH:  Yes! Very much so. Yes.

Don Don was seventy-eight at the time of our conversation, and lives on the edge of a rural town in eastern Wiltshire, a place he settled with his wife after retirement – Wiltshire is the largest county in the west of England, bordering six counties, from Somerset in the west to Berkshire in the east, and is the home of Stonehenge and Salisbury. Don and his wife have two adult daughters, an adult son and a number of grandchildren of various ages, although none of Don’s children live at home: one daughter lives in the US, whilst the other two children are still in England. Don was born and brought up in a small rural village near the East Sussex coast, just months before the beginning of the Second World War – East Sussex is a rural county in south-east England, due south of London. Since childhood, Don lived mostly in the south and south-west of England, although he’s also traveled to different countries for work. Don noticed his main impairment around ten years before our conversation, when he was a warden for his local parish church. As with Tallulah, he was referred to a local hospital by his doctor, and had an aid fitted to help

138  Ageing and disability in cultural heritage support him physically. Also like Tallulah, since his first impairment Don also developed other minor physical impairments, although didn’t regard any of these as disabilities. DON:  And it doesn’t embarrass me at all . . . I was church warden and they’d

put a new sound system in, and everyone was complaining they couldn’t hear it. And I thought to myself, “What are you complaining about, I couldn’t hear anyway.”

Bonding – early school and family experiences In common with my other cases, Don’s earliest cultural experiences came from his childhood, and of these experiences his family in Sussex during the Second World War played the most important role. On reflecting on his early life, Don told me two influences from that time inspired a love of travel, and a longing to discover his own history through different cultures. Don’s first influence was his family home’s closeness to the southern English coastline, where Spitfires frequently flew overhead on their way to northern Europe or the English Channel. As a child, this had an impact on his school friends, for whom these flights were a source of excited conversation and storytelling. Don also told me that seeing his father’s unit of the Home Guard training with their imagined guns over their shoulders had a profound effect on him later – the Home Guard were a voluntary army of citizens in Britain during the Second World War, who initially supported the regular army, although they were only supplied with real weapons later on in the War and were affectionately known as Dad’s Army. Don’s second influence was the tales of army-life, war and battle by one of his grandfathers and his uncles, who’d all enlisted in the British army as younger men. Don particularly remembered his grandfather’s stories of army-life in the Somme, a famous river valley in northern France that was the place of a famous battle in the First World War. On reflection, Don still thought his experiences of cultural heritage were largely guided by these earliest experiences at home, particularly his memories of family and local community life. It was in this community that Don developed an interest in the military, food – from agriculture to baking – and sport, something that followed him into adult life. As he told me, “The things you do find in museums are the things you were brought up with.” As a child, Don’s family were in the farming industry, and his father managed the largest market garden in the area, growing fruit and vegetables mostly under glass. In 1940, his father’s market garden had one of the first German bombs, which was unaffectionately known as a Doodle Bug, land on its plentiful greenhouses, though fortunately there was no one there at the time.

Experiences of late disability 139 As the German bombing became more frequent and dangerous in southeast England during the early course of the war, Don, his sisters and mother were evacuated to an isolated part of southern Somerset. However, they only stayed there for a short while. DON:  I went

to school for the first time down there. I didn’t like it down there, my sisters didn’t like it, my mother didn’t like it, so we quickly got back on the train and came home. We didn’t have tickets or anything, we just got on the train and came back home, and never heard another thing about it, I don’t think.

Another reason the family were reluctant to stay in Somerset was that Don’s father had decided to stay in East Sussex, as he was still working the land and serving in the Home Guard. Consequently, and although it was difficult to return back to his home village during the bombing, Don still feels in hindsight it was the right thing to do, as they really wanted to stay together as a family. Don’s connection with agriculture became stronger after the war, as he helped supplement his family income as a child by doing a series of jobs working with food and drink. One job he remembers well was picking hops, a key ingredient for beer, in the adjoining county of Kent. Don told me he remembered this experience vividly: the village, the name of the family his family picked for, the way he was transported in an old van, his memories of sitting in the back of the van, he even remembered there was rather a nice smell of petrol as they drove along. DON:  It

was one of those things . . . people were generally not very well off. So, something we did as kids [as well] was picking peas. And, I was quite good at catching moles, and I would dry the mole skins on boards and sell them.

Don’s next job was working for a local baker when he was ten years old. He also remembered working a milk round early in the morning before he went to school in Lewes, at around the age of eleven. At school, Don told me he was also a keen cricketer and played for a succession of local teams; he even trained with famous Sussex County cricketers, who helped develop his game and his enthusiasm for the sport. Don was also surrounded by other local people who were sporting heroes, such as the world boxing champion, Don Cockle, who could always be seen around the area. As Don explained of himself, “I was always active.” Don’s early jobs eventually led him to earn his living as a sales representative, and his first job after leaving school at eighteen was working for an auctioneer, organizing farm and house contents sales. Don said he really loved this job, and felt it drove his sense of commerce – all his family were

140  Ageing and disability in cultural heritage entrepreneurial, he explained. It also led him to search out exhibitions and cultural events later on, which centered on food production. SIMON:  So, you’re interested in going DON:  Yes, definitely. I go to market

to agricultural places still? gardens and centers; and when I go around to museums where there are ploughs and spades and stuff people used in the kitchens in Victorian times, I think to myself “I sat in a galvanized bath.” So, those kinds of things do shape you as well, I guess.

Learning – cultural learning and ambitions for learning Although Don’s early education seemed fairly regular, the nature of his studies and community had a profound effect on his later cultural practices and his development of inclusive capital. It particularly had an effect on his habit of collecting, and his love of travel – mainly where he traveled to. As I noted above, Don started his education at an infants’ school in Somerset, although he quickly transferred back to an infants and primary school in East Sussex. Aged eleven, Don took and passed the eleven-plus exam – this was an exam taken in the final year of primary school to determine what upper school you attended. Having succeeded in the eleven-plus, Don attended his grammar school in Lewes. In the years immediately after the Second World War, Don told me his education was very much about what was called the three-“Rs,” which he was particularly good at – the three-“Rs” stood for Reading, Writing and Arithmetic, and was the standard curriculum for all children at the time. Alongside his work experience and living alongside food production, Don looked for opportunities to combine his schoolwork with food, which eventually led to his love of collecting cheese labels. DON:  Well, I collected cheese labels and built up a wonderful collection with

different cheese labels from all over the world. What I began to find was they usually sent me a sample of cheese as well . . .     So, I remember Brooke Bond Tea having a competition, a handwriting competition. And I actually won a national competition for handwriting. Now, you wouldn’t think so if you saw my handwriting now. But writing to me, and writing a letter, became very important. And so, I was quite capable of writing a letter to the “Dear Sir or Madam” at the companies. I’ve got hundreds of different of labels. Another experience that had a profound effect on Don, particularly his self-guided learning in adult life and older age, was his National Service in the army when he was in his early twenties – National Service was a compulsory period in one of the British Armed services that existed until the early 1960s. Importantly, these experiences rekindled his memories of watching his father in the Home Guard and his grandfather’s stories of the First World War.

Experiences of late disability 141 Don told me his passion for the re-telling of stories by his family was also reflected in his academic success, particularly in history. At school, Don was always good at history, although he was always disappointed because his school only studied social and economic facts from selected eras. As Don explained, if you asked him about kings and queens of England he really couldn’t tell you about them. But ask him about the first crossing of the Atlantic or the first steam engine, those kinds of things he remembered and found interesting. DON:  History

for me was a lovely subject, and it still remains that for me, and it gives you conversation with people . . . It’s probably people that interest me most.

Don’s love of history was realized whilst he was in the army, and he was stationed near the sites of battles from the Second World War he’d heard of as child, particularly those in northern France. These sites later became an intellectual fascination, which constantly drew Don back over the years to study their histories and confrontations. DON:  I was

interested to see their operations in France [in the Second World War]. And there are places where gliders landed at Pegasus Bridge. So, those kinds of things are very attractive to me. But I guess, it’s part of my life experience that you read about it, and you see an opportunity to actually see what happened.

Having discovered his passion for travel, history and culture, Don’s next interest in learning about culture came through his jobs in engineering and sales after leaving the army. These new vocations took him far beyond the fields and battlefields he had experienced before, as they were in countries such as Columbia, Russia and South Africa. On reflection, Don told me it was this experience of travel and working with people of different faiths and cultures that got him interested in the food production of other countries and other cultures. Eventually Don found what he described as a perfect job at fifty years old, which allowed him to go to university and take a postgraduate certificate in International Marketing. This new career also made vacations beyond Europe important to Don, his wife and his family too, something he told me that still holds true today irrespective of his impairment. Don explained this fascination with different cultures largely came from working with others of different faiths and nationalities over the years, which gave him a different perspective on the world. DON: 

My last business, which we grew from nothing, there were four directors there: two Muslims, one Jew, and one Christian. And we worked together for twelve years. And, we never, ever had a problem. We never

142  Ageing and disability in cultural heritage discussed religion. And we always supported each other. So, the Muslims during Ramadan, we helped them out. So, my distributors around the world, I wasn’t interested if they spoke English, or if they were Anglican [Protestant Christian]. So, I had a mixture of Muslims in Iran, Buddhists in Sri Lanka, Hindus in India, and we got on great! And I wanted them specifically to do a job for me . . .      It gave me opportunities to actually visit places. So, to go to a Hindu temple in Madras and actually have it explained to me, and then to go to Thailand and to go into a Buddhist temple, and having that properly explained to me.

Information – sourcing and using cultural information Don’s experience of information and technology also seemed to be influenced by the habits he developed during his early education, reading, collecting and career, and the time he spent with his family growing up. These experiences permeated not only his family’s visits to museums, but also how he and his wife chose the destinations they visited. DON:  And

we always find ourselves studying the brochures, the holiday, the beaches of the Dunkirk landings, and things like that . . . My international travel really, and it must have been there since I was a lad I think that I wanted to travel, probably comes back to the days when I spoke to my grandfather and my uncles, who actually had to fight for the country.

What’s more, as computing had been a significant part of his job since the 1980s, Don was technically literate and tried to keep abreast of the latest hardware and software on the market. As he explained, “And when technology got going, I was going with it . . . I’ve always been interested in technology.” Don felt his need to research experiences before visiting museums or vacation destinations came from his time working in marketing, where research was important. This early experience of work also motivated him to buy the latest smartphones, which also allowed him to search for information on the move. DON:  It’s

really my computer nowadays. I’m good at using it, and I’ve kept up to speed with that. And I can use social media, and Facebook and all that kind of stuff.

Don’s use of digital technology and his need for information seemed largely unaffected by his impairments, and allowed him to maintain the practices he’d lived with all his life – particularly his working life. Important

Experiences of late disability 143 to his life story, Don’s previous technical literacy motivated him to keep, maintain and update his digital literacy after retirement, and he remained an active user of information technology for research and pleasure. For instance, Don told me about a recent experience of visiting London’s national Science Museum with his family. During the visit, he was happy to pay extra to try a space shuttle simulation, an experience he found particularly stimulating as he got to experience travel he’d only seen on the news before – albeit through a simulator. This experience he related to his childhood reading of comics, funny papers and stories, which had characters that fascinated him as a young lad: SIMON:  Do you like science museums? DON:  As a child, The Eagle was a comic all us boys read, and there was Dan

Dare, I think, and “Journey into Space.” So, space travel is interesting to me because you were there when they landed on the moon and things like that. But it would have to be something moving and dynamic [to get me into a museum] . . . And, something I can relate to personally. Nowadays, Don also used his home computer to research visits to local attractions or days-out he took part in on his international vacations. As he explained, this research was largely a habit formed by his “marketing brain,” which became used to research. Don explained that he tended to analyze most things he did in his leisure time rather than just jumping into decisions, as this helped to minimize the risk of disappointment and boredom during visits. As he explained during our conversation, “I get bored quite quickly.” For instance, as they both like to go on cruises and package vacations with groups of friends or as a family, Don told me he and his wife choose their destination in terms of the day-trips available to them. And, of these activities, they will always choose the experiences that closely fit their historical or cultural interests. DON:  So,

we’ve been around the brochures. And, when you see the days trips we’ve had on cruises. And we think, “where are we going to go today, or where are we going to go in three months’ time?” And we tend to pick out these experiential centers, something like Gettysburg would appeal to me.

Places and spaces – experiences of, and loyalty to, institutions Like his habits of researching and analyzing information, Don’s loyalty and sense of inclusion in places and spaces was largely influenced by his early experiences whilst bonding and learning. As he and his wife were fond of overseas travel, their choice of destination was often guided by the strongest memories they had from childhood.

144  Ageing and disability in cultural heritage For instance, as Don fondly remembered discussions of the First World War with his grandfather, his choice of destination was often based on destinations from the two world wars. Don explained the first trip he, his wife and young family took overseas was a week in Ostend, north-west Belgium, in their car. From Ostend, they’d traveled up the canals in Amsterdam, and visited the Dutch water gardens. As Don remembered of this visit, “I’d never been there, but they were absolutely fantastic.” On their second visit, Don and his family again started their holiday in Ostend. However, this time they also visited Ypres, Belgium, the scene of some of the fiercest battles of the Second World War, and then the Somme, the battlefield his grandfather served on in the First World War. Their travel to these sites became an annual event and, Don told me, by the time his three children went to university they’d all been overseas on a regular basis, something they then continued to do as adults. DON:  So,

little bits can be filled in and I’ve never thought of tracking it, but it does tend to track back to those days . . . So, it wasn’t surprising I guess when I saw an opportunity to go to Ypres and the battleground of the Second World War.

Nowadays, with fewer family expenses, Don and his wife choose to go further afield, again unburdened by Don’s impairments, to more tropical climates. For instance, as his wife enjoys growing orchids, they recently visited Barbados where these flowers can be found growing wild. DON:  And

to actually go to Barbados and actually see the Orchids growing [naturally]. And they could be hanging there from the ceiling with nothing there at all . . . If you’ve worked hard all your life, that’s what’s inspired us.

Don and his wife also get to travel to places that reflect their faith, to feel closer to the sites they learnt about in the Bible when they were younger. For instance, in recent years they traveled to Israel, to places where the disciple Paul traveled, and to the house where the Virgin Mary lived when she was young. From there, Don and his wife visited Jerusalem and went across Lake Galilee, although they also took the chance to visit a Palestinian refugee camp and, as Don recalled, experience what he’d read about in the papers. DON:  You

do experience it yourself in a way. So, I guess what all our trips do is bring reality to what you read about . . .     We did a marvelous thing, being a Christian it was marvelous how enjoyable it was. And now you hear the readings at Easter, they come back so much to you. You can picture them. And any time you sing a hymn, like “By Lake Galilee,” and you can picture it.

Experiences of late disability 145 As with his cheese labels, Don and his wife also collected keepsakes from their visits, and in their dining room they now display plates from the places they’ve visited. As Don explained, these weren’t simply pieces he’d collected casually, these plates were mementos of the experiences his family had. In this way, it was as if they acted as symbols of a time he wanted to keep in mind. As well as his trips abroad, Don and his wife were also active in their local community places after retirement, mainly through their local church, and Don through the Free Masons. Don also volunteered regularly and, as part of his activities, regularly raised money for local charities and volunteered as a driver, a mentor and as a helper at a local children’s group – he’d taken part in the latter role with his wife. Don was also active in the church, and still attended regular Sunday services. In this way, he gained a greater sense of inclusion as part of his local spaces.

Discussion In many ways, Tallulah’s and Don’s experiences were similar to the participants in the previous cases. The practice of both participants was heavily influenced by their families and again their early communities and inclusive cultural practices. This meant that although their cultural preferences were different, their experiences of visiting places related to cultural passions were similar. Consequently, the cases featured in this section were motivated to develop cultural habits and practices independent of their impairments or disabilities. For example, artworks were an important part of Tallulah’s childhood and her relationship with her family, particularly her relationship with her mother and father, who she was close to her. This meant her early experiences of cultural bonding were focused on experiencing paintings at home, and local public artworks and historical houses as a young girl. What’s more, her visits to galleries with her big brother as a young teenager allowed her a rare chance to bond on his return from the Second World War. This practice affected Tallulah’s bonding with her own children years later, and affected her later practice of learning about the fine arts through her Open University course. What’s more, these earlier habits meant Tallulah sought out information from the art institutions she revered when she was older, and worked hard to interact with places where artworks were exhibited. This practice not only made Tallulah feel included and allowed her to bond with others when she needed friends most, it also meant she developed self-confidence when she needed it most of all. Similarly, Don first learnt about military history through his family, an experience that would have a profound effect on his cultural practice later on. Don learnt his father’s military practice through watching him drill with an imagined gun, and he learnt his grandfather’s practice through his narrative of battles he took part in. What’s more, Don also went on to experience

146  Ageing and disability in cultural heritage battles and war first-hand through the bombing his community experienced when he was still a small child. These experiences were to have a profound effect on his cultural memory. These early experiences of bonding, alongside his own experience of serving in the army during national service, stimulated Don’s interest in history and the places he visited in adulthood. Consequently, his first overseas vacations with his family were to include visits to the sites of important battles from the two world wars. What’s more, Don’s experiences of history at school were shaped by his memories of his grandfather’s stories. As importantly, Don’s early experience of growing up around food production, agriculture, and horticulture had an effect on his later career and his need to gather information as an older child. What’s more, these memories affected his cultural practice, what he chose to collect and even the way he went about gathering information to choose which places to visit. So, when Don started developing a serious collection as a child, his choice was to collect cheese labels, an object that required thorough research and was connected to a space and place of production. However, both Don and Tallulah found that interacting with cultural heritage became particularly important as a way of feeling included as they went through important transitions in their life. Although these periods weren’t necessarily related to the development of their impairments, their adaptation of cultural practice as they aged and found they could do less than they used to, became more important. For example, Tallulah felt that studying the Philosophy and History of Art was particularly important after her husband died and she found herself alone after her boys left home. This experience not only linked to her previous experiences of bonding as a young girl and as a younger woman, it also meant she developed new friendships and bonds, and new practices of gathering information. What’s more, although Tallulah found it difficult to make the sudden move to her new village in southern Somerset, this transition was made easier by her interest in the arts and visiting gardens. Her membership of NADFAS and her gardening club meant she could bond with like-minded friends, and it meant she could connect with places through visits and voluntary work, which boosted her self-confidence. Similarly, after retirement Don and his wife became involved in local community activities and visited places overseas together more frequently than they had done previously. Although this was due in part to their increased leisure time and the resources they had available after their family left home, the habits and practice of these visits and volunteering was affected by previous experiences. For instance, much of their volunteering and at least one of their vacations was reflected in their Christian faith, the places they learnt about through church and the Bible. So how do the experiences of all these case studies, from young to old, early onset of impairment to late onset of impairment, compare to the

Experiences of late disability 147 practices of institutions providing access to cultural heritage? As important, do institutions take account of the different cultural needs of their visitors with disabilities? In the next section of this book, I examine these two questions through the cases of three sites of cultural heritage in the US: Yosemite National Park in California, the Statue of Liberty in New York and Museum of Fine Arts, Boston in Massachusetts.

Notes 1 Hayhoe (2015) Gregory (1974) 2 Sacks (1993) 3 Merleau-Ponty (2002) 4 Hayhoe (2012) 5 6 This is a pseudonym.

References Gregory, R. L. (1974). Concepts and mechanisms of perception. London: Duckworth. Hayhoe, S. (2012). Grounded theory and disability studies: Researching legacies of blindness. Amherst, NY: Cambria Press. Hayhoe, S. (2015). Philosophy as disability & exclusion: The development of theories on blindness, touch and the arts in England, 1688–2010. Charlotte, NC: Information Age Publishing. Merleau-Ponty, M. (2002). Phenomenology of perception. London: Routledge Classics. Sacks, O. (1993, May). A neurologist’s notebook: To see and not to see. New Yorker. Retrieved from http://www.newyorker.com/printables/archive/060619fr_ar

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Part III

Cases of access and inclusion at cultural institutions The chapters in this section discuss three cases of cultural institutions in the US and their policies and strategies that foster inclusive capital. These cases are: Yosemite National Park, a mostly natural wilderness in California that is famous for mountains and Sequoia trees; the Statue of Liberty, a monument on Liberty Island, New York, which along with Ellis Island is designated as a National Park; Museum of Fine Arts, Boston, a large art museum with an extensive collection of modern and ancient pieces. This case study comes from a broader study of museums and national parks in the US and UK, which started in 2011. This study started through consultation with nine professionals in access to cultural heritage and education, and twelve people with disabilities who participated in cultural heritage activities in London, Boston, New York and San Francisco Bay. The sampling of these participants was mostly through personal contacts, and as it was qualitative and a pilot, it took little account of factors such as age, gender or ethnicity. My consultations were all based on discussions of between half an hour and an hour, and all started with a simple question: What makes a cultural space accessible? These discussions then developed into what the participants considered to be examples of good practice – the professionals worked for institutions such as national museums, small and large regional museums, and schools for students with disabilities; the participants with disabilities had many years’ experience of visiting museums, monuments, and national parks. This consultation led to the following list of six criteria that were felt to provide effective accessibility: 1) access was more successful when spaces were easy to find out about and book into; 2) spaces were more accessible when they could be reached and entered easily by car, bus, subway or rail; 3) spaces were more accessible when they made cultural objects accessible, preferably gave physical proximity, and provided accessible information about these objects; 4) spaces were more accessible when they provided other accessible services, such as bathrooms, cafes, classrooms, and shops; 5) spaces were more accessible when they had classes and activities for all; 6) access was at its best when the space was open and mobility was easy.

150  Access and inclusion at cultural institutions After drawing up these criteria, I began searching for institutions that fit them through searches of documents describing their history, buildings and restoration and access service through the web – in several cases, I also researched their locations for ease of accessibility through Google Maps/ Street View and their collection of objects through their online databases. This search left a list of twenty-three national parks and museums. A further search was then conducted through these institutions’ websites for accessible information, information about transport, education and policies, and any other information that participants with disabilities told me was useful. From this list of twenty-three cultural heritage sites, data was analyzed to choose suitable institutions that could provide useful case studies, using the following four criteria: 1) whether their location was in the same state as the locations of the human cases studies I was developing; 2) the diversity of the sites, with a blend of physically large sites and small sites, large visitor numbers and relatively small visitor numbers; 3) the diversity of access issues at the sites, from sites displaying untouchable art, to sites with natural barriers, to monuments where the building was the attraction and couldn’t be changed; 4) the sites had personnel who agreed to participate in the study. This second search left me with six sites to choose from: four in the US and two in the UK. Eventually, I only chose cases from the US, and emphasized the National Park Service for two practical reasons: 1) the National Park Service had a national policy of accessibility; 2) all US sites adhered to the same laws defining inclusion for people with disabilities, most particularly: a) the Architectural Barriers Act, which governs the actions of the Federal government, b) the Americans with Disabilities Act directs non-governmental actions. This preference for the US meant I could make direct comparisons between the variety of cultural heritage sites the country had – although the UK has its own legislation, the 2010 Equalities Act, it’s legal philosophy is different, as disability is a protected characteristic amongst others, such as gender and ethnicity. Consequently, I arranged discussions and online questions with the professionals responsible for inclusion and access at the three chosen sites. Each officer was sent the same set of questions and informed consent ahead of time by email, and I requested they either sent their answers by emails or post or arranged a telephone discussion. I carried out the last of these interviews in late Fall 2017, and in some cases, participants sent me additional policies, which we discussed after our sessions or email answers. During my analysis of the answers and policies, I interpreted strategies of inclusion and access through four of the five stages of developing inclusive capital: bonding, learning, information, and space and place – mobility was embedded in all the previous stages. The diagram below is copied again below as a reminder of the image I introduced in Chapter 3. These strategies of developing inclusive capital were subsequently found to be implemented proactively – that is, strategies that are planned in advance – and reactive – that is, strategies that are developed based on the given, often unforeseen, situations. The following three chapters are the results of this study.

Mobility Spaces and Places Informaon

Learning

Bonding

Figure III.1  The development of inclusive capital and a sense of inclusion

9 Yosemite National Park, California

Introduction About Yosemite National Park On the eastern border of California where it meets Nevada, and in the middle of the state as it runs north to south, Yosemite National Park (Yosemite) is what can perhaps be called a traditional US National Park. Yosemite spans three counties, is a UNESCO World Heritage Site and is a part of the Sierra Nevada mountain range; the latter mountains separate the dry and dusty desert region to the east of the Nevada state border with the mostly lusher, greener environment of central California. Yosemite is over 1,100 square miles (more than 3,000 square kilometers), full of angular igneous mountains, luscious meadows, torrential rivers, soaring glaciers, and thick forests of Sequoia trees. Around 95 percent of the park is designated wilderness by the US government, and its place in the Sierra Nevada also provide it and parts of central California with a unique temperate climate. At just over five square miles (around fifteen square kilometers), the cultural heart of the National Park is Yosemite Valley, which gave Yosemite its name. This relatively small valley was incorporated as a National Park by Abraham Lincoln in 1864, and was the first part of Yosemite to be designated as National Park. The rest of Yosemite was later designated a National Park in sections, after it was observed that its natural heritage was under threat from those using its natural resources without respecting its unique environment. In the present era and being so vast, Yosemite has a range of natural and cultural heritage unique to anywhere on the planet; although accessibility to this habitat for all human visitors differs greatly according to snowfall, rainfall, land and river movement or forest fire, and you often see warnings of these natural events on Yosemite’s website. Yosemite is also far from large cities and sprawling urban areas. San Francisco is more than 165 miles by road (around 265 kilometers, or estimated to be almost three and a quarter hours’ drive), Los Angeles is almost

154  Access and inclusion at cultural institutions 280 miles by road (around 450 kilometers, or estimated to be around four hours twenty minutes’ drive) and Las Vegas, Nevada, is over 455 miles by road (around 730 kilometers, or estimated to be over six and three quarters hours’ drive); the latter journey takes in a route that circles the mountains and the National Park, as there are no interconnecting highways, although by a straight line on a map it is much closer. Despite the remoteness of much of Yosemite, the land making up the National Park contributed significantly to the early industrial wealth of California. The peaks and valleys that make up part of the mountains in Yosemite contained minerals and precious metals that were prospected and mined during the early nineteenth century; there is even a famous children’s cartoon character, Yosemite Sam, the friend of Bugs Bunny, who was drawn and painted to represent a prospector from this era. To highlight all the natural and cultural features of Yosemite would be way beyond a single chapter on this National Park. However, there can be said to be four different types of environment that highlight the National Park’s facilities and its natural and cultural attractions. These four are: the trails and highway routes through the National Park; the mountains that are its defining vistas; the meadows that carpet the valleys and the lower regions; traditional buildings and cultural monuments like the visitor centers and museums; and the frozen and liquid waters from the top of the mountains to the flood plains at its lowest points. In Yosemite, Yosemite Valley itself has what can perhaps be called the most famous and certainly most visited landmarks. These landmarks include: Tunnel View, the view of Yosemite Valley from its opening, encompassing its winding meadow floor against its gray mountain sides; El Capitan, the tallest sheer granite cliff in the valley that towers above the rest of the mountains; and Yosemite Falls, which is in three parts and reported to be the tallest waterfall in the US, which is at full flow in the Spring when the ice and snow atop the mountains melt. Depicting its natural and human histories, the National Park’s cultural centers include, but are by no means restricted to: Yosemite Conservation Heritage Center, which has an exhibit hall that educates visitors about the natural development of Yosemite National Park; Yosemite Museum, which also features the history of the local Native American peoples, such as the Miwok and Paiute peoples; Yosemite Cemetery, a graveyard where visitors who want to make the valley their final resting place, local Native Americans and locals are buried. All these attractions are located close to each other, and are easily visited by many. Yosemite also has an Ansel Adams Gallery, featuring photographs of perhaps the most well-known American photographer of his age, whose work often featured the natural vistas of Yosemite. These buildings are largely developed from renovated early structures or built in a traditional western logging style – this is known as National Park Service Rustic or ­“parkitecture” – and have traditional wooden façades of logs or layered planks.

Yosemite National Park, California 155 Inclusion and access at Yosemite National Park I started my survey of Yosemite through its website and the website of the National Park Service in California – that latter includes numerous other national parks in California. After analyzing its public policies and other information open to the public, I contacted personnel at the National Park Service and was put in touch with their relevant officers in Yosemite and their offices. My contact at Yosemite was an assistant superintendent I called Rosamunde, and my contact at the National Park Service central office was an officer whom I called Alfred. Before questioning Rosamunde and Alfred, I sent them an informed consent letter and my list of questions via email. Both Alfred and Rosamunde provided extended answers back via email, and numerous links to management and access policies, as well as laws that informed their policy and practice in late 2017. After writing the case study of Yosemite, I sent the case that follows to Rosamunde at Yosemite for verification. So, what difficulties and advantages does Yosemite have when providing access to visitors with disabilities? Four access disadvantages at Yosemite are: 1) as the park is around 95 percent wilderness, it’s not possible to develop many regular tarmac or asphalt highways or flat trails that would make mobility easier for visitors with physical impairments; 2) the sheer vastness of Yosemite makes it difficult to deploy accessible resources throughout the National Park, or to judge where resources are best deployed at particular times; 3) the most spectacular monuments of Yosemite, such as its mountains, glaciers, and rivers, are its least accessible features and particularly dangerous for nondisabled visitors and visitors without disabilities alike – it could be said that its inaccessibility is part of Yosemite’s charm; 4) Yosemite has National Park and UNESCO World Heritage Site status, meaning that even where changes can be made the legality of doing so is highly restricted. However, four access advantages at Yosemite are: 1) Yosemite draws from the resources of the National Park Service, the management policies, its economies of scale and the national officers devoted to access and inclusion; 2) although the whole of Yosemite is vast, its main landmarks are concentrated in the relatively easily managed area within the Yosemite Valley, where most of its four to five million annual visitors stay; 3) as it is a traditional national park with a number of other peer national parks, it can draw on other models of access and learn from other protected areas throughout the National Park Service and the history of access it has been developing in such spaces; 4) as Yosemite is such an important landmark people are willing to take greater risks to visit and be part of its experience. Historically, national parks in the US considered individual visitors with disabilities informally until the early 1970s. After this, Alfred and Rosamunde explained, the National Park Service first considered accessibility as a national issue following the passing of Section 504 of the Rehabilitation Act

156  Access and inclusion at cultural institutions in 1973. This law required federal agencies to ensure their programs and facilities were accessible to individuals with disabilities: No otherwise qualified individual with a disability in the United States . . . shall, solely by reason of his or her disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance or under any program or activity conducted by any Executive agency or by the United States Postal Service.1 In common with other government funded institutions, the Rehabilitation Act applied to the environments of national parks. Later in the twentieth century, the Americans with Disabilities Act (ADA) of 1990 affected the management of private concessions within national parks – it was noted by Rosamunde that in practice the ADA did not directly change the Rehabilitation Act, although in practice they work in tandem: the ADA, which is much more detailed, is used to understand and provide examples for the Rehabilitation Act’s intent. ALFRED:  Between

the two laws, all government funded programs are covered. Of course, there are many programs, such as school districts which receive federal, state and local funds, and are therefore covered by both laws at the same time.

The National Park Service tackles its access issues proactively through the National Accessibility Branch (NAB), a separate national office with responsibility for inclusion. As Alfred explained, operationally NAB sits within the Parks Facilities Management Division, under the Associate Director for Parks Planning, Facilities, and Land, as physical access is a key issue. NAB is currently staffed by a Branch Chief and two accessibility specialists, and this team of three collaborates with seven part-time Regional Accessibility Coordinators; the Regional Coordinators do not report to or work for NAB, but NAB provides advice and consults on good practice. Subsequently, the Regional Coordinators also collaborate with the accessibility coordinators at each park, although likewise the park coordinators do not report to the Regional Coordinators. As Alfred explained, NAB’s role is primarily to collaborate with others across the National Park Service, such as the in-house specialists on accessible media, and exhibits. In addition, NAB also leads a National Park Service Accessibility Coordinating Committee (ACC) to discuss broader issues and policy. All of NAB’s activities are designed to bring together stakeholders in accessibility from across the nation’s national parks on a regular basis. This network of expertise provides something akin to a community-of-practice model of cooperation and practice sharing.2

Yosemite National Park, California 157 What’s more, to incentivize good practice across the national parks, every year NAB presents awards to individual parks that complete outstanding projects related to accessibility. As Alfred explained, these awards are for National Park teams who “have shown sustained commitment to accessibility over a long time.” The administrative infrastructure under NAB’s control seems to be important for two primary reasons: 1) access across all national parks can develop similar procedures for dealing with visitors with disabilities, meaning visitors can expect similar levels of service across all national parks; 2) having a single body overseeing access means good practice can be shared amongst the national parks with similar access issues, and models of practice can be coordinated by the National Park Service as a whole. The original system of accessibility was set out in an order by the director of the National Park Service in November 2000, and crystalized the looser system that had been in place since 1979 – the director is the highest ranked administrative officer in the National Park Service, and defines issues such as policy and visitor support. The original order was written as follows: In 1979, the National Park Service (NPS) decided to approach the issue of accessibility in a comprehensive, organized way, rather than on a project-by-project basis. The primary goal of the program was to develop and coordinate a System-wide, comprehensive approach to achieving the highest level of accessibility that is reasonable, while ensuring consistency with the other legal mandates of conservation and protection of the resources we manage.3 During my correspondence with Alfred and Rosamunde in ­September 2017, the National Park Service was also finishing the third year of a five-year strategic plan to introduce an updated system of accessibility. This plan was to take into account contemporary issues such as new legal mandates, technological development and updates in practice by other services. Yet, it would also incorporate the original five objectives of its Director’s Orders: 1 Incorporate the long-range goal of providing the highest level of accessibility that is reasonable for people of all abilities in all facilities, programs, and services, instead of providing “separate” or “special” programs. 2 Implement this goal within the daily operation of the NPS, its policies, organizational relationships, and implementation strategies; 3 Provide further guidance and direction regarding the NPS interpretation of laws and policies; 4 Establish a framework for the effective implementation of actions necessary to achieve the highest level of accessibility that is reasonable; and, 5 Ensure the implementation of “universal design” principles within the National Park system.4

158  Access and inclusion at cultural institutions So how do these National Park Service policies develop practice and inclusive capital at Yosemite?

Inclusive capital at Yosemite National Park Bonding Yosemite has no specific strategy for encouraging bonding, but as a vacation destination it does encourage close relationships with family and friends at campsites and lodges. For example, for families or friendship groups with disabled members, Yosemite provides accessible language services, and physically accessible physical spaces and places in its accommodation. In this respect, Yosemite can be said to be proactive about facilitating bonding, and this task is most often associated with the Accessibility Coordinator. Although, Rosamunde explained, Yosemite doesn’t have a coordinator with responsibility for what she referred to as “programmatic accessibility,” there is someone in the planning division who has the collateral duty of “accessibility coordinator.” This coordinator is technically responsible for all types of accessibility but has expertise in physical accessibility. ROSAMUNDE:  Accessibility

Coordinator is usually a collateral duty in the NPS. There is also a regional Accessibility Coordinator, as well as someone at the national level. In Yosemite, there has been someone in the role for at least 20 years – there has [also] been someone doing Deaf Services since 1979.

Both Rosamunde and Alfred explained it’s very rare national parks in general offer tours specifically for people with disabilities, preferring instead to include all visitors in regular tours. This being said, Yosemite can accommodate an advance request from groups of individuals with disabilities traveling together who need bespoke tours. These bespoke tours are particularly important, as schools, associations or simply people living independently but identifying themselves as having a disability can make provision for a specific visit according to their particular needs. ALFRED:  For

example, if a large group of individuals who are Deaf wanted a tour with a sign language interpreter, a unit [an individual National Park] would arrange it. In other cases, there are park units that have areas that have been designed to be more accessible than others and tours are offered accordingly. For example, we have a number of caves where only a portion is accessible for wheelchair users, so the unit would arrange for visitors in wheelchairs to experience that portion of the cave.

Importantly, and in common with other national parks, Yosemite is not allowed to provide costed services that charge people with disabilities extra

Yosemite National Park, California 159 because their services cost more to provide. This equal charging also goes for concessions and businesses that run within Yosemite, although if this extra cost makes a business loss-making the National Park Service makes up the difference. For instance, Yosemite provides visitors who are Deaf or hard of hearing with free services prior to arrival and during visits, such as trip planning and assisted listening devices. What’s more, Yosemite has also installed a public videophone at Yosemite Lodge for signing and lip-reading visitors; it also offers a free Access Pass to the park, although this Access Pass is common to all national parks – including the Statue of Liberty, which is discussed in the next chapter.5 Yosemite’s regular tours can also include an American Sign Language (ASL) interpreter on request at no extra cost, meaning that ASL signers can join in tours with hearing groups. According to its Deaf Service documentation, ASL signers can also be made available at visitor centers, Yosemite’s hotels and medical services.6 Learning In common with its other services, Yosemite is proactive in making its regular learning environments inclusive. Learning at Yosemite includes physical activities as well as academic or cultural learning, such as theater programs and art classes, skiing, horse-back-riding, guided backpacking and hiking lessons, bus tours and photo walks. In keeping with this policy of inclusion, Rosamunde described several of its accessible services, which are related to learning, are managed by what might be described as its regular services. For instance, Yosemite’s Deaf Services is an example of proactive and inclusive provision, as it resides within general interpretation rather than Access services – importantly, its coordinator reports to the Chief of Interpretation, as a means of most easily coordinating with all interpretive branches and other divisions. Importantly in this process, Yosemite does not employ language interpreters, although this is a skill sometimes held by park staff. As Rosamunde stated, the hiring of a permanent ASL interpreter was largely for four reasons: 1) to comply with the Rehabilitation Act; 2) to support the large number of Deaf visitors, due to Yosemite’s close access to large cities and the popular nature of the park; 3) Yosemite’s history of having a Deaf Services program; 4) Yosemite’s commitment to being a leader in the National Park Service in this field. What’s more, Yosemite’s physical accessibility service is within the Division of Project Management, and its Accessibility Phone Line is answered by staff in Project Management. ROSAMUNDE:  Programmatic

accessibility is managed by a variety of staff, for example, the web manager is knowledgeable about web accessibility. The sign designer is aware of accessibility for non-personal interpretation.

160  Access and inclusion at cultural institutions In complying with the Director’s Orders of the National Park Service, and given advanced notice, Yosemite’s inclusive learning is usually developed through technologies and support workers. These services are centered on physical and sensory needs, although materials can also be developed for people with learning difficulties – this being said, because of the nature of physical learning activities most information and guidance is verbal during periods of instruction. As previously stated, Yosemite also has the capacity to develop bespoke specialist classes for people with specific disabilities on request. For instance, Yosemite’s permanent Deaf Services department can develop lessons and learning tours for groups of people who are Deaf, if contacted by the group in advance – as Deaf Services are based in Yosemite Valley, this can be arranged relatively quickly. The same educational tours and services can be developed for groups of people with other disabilities on a seasonal basis, where specialists can be arranged, although this takes longer to arrange. ROSAMUNDE:  We

do not have publicly advertised classes for people with disabilities, although we will lead walks for groups who have disabled members by request. This has been occurring for at least 20 years. Deaf Services frequently offers specialty talks or walks for large Deaf groups . . . Occasionally the park will hire a seasonal with special training (for example, working with students on the Autism spectrum) and that will be utilized during their season, but there is no hiring specifically for these skills . . . We wouldn’t normally hire outside contractors. Our staff can provide this service upon request. The autism example is to show that occasionally staff have additional and specialized skills which can be utilized, but otherwise, any interpretive staff can craft their program to be inclusive at any time.

Of all its services, Yosemite is perhaps best known for its Deaf Services, and this service is no more apparent in its policy of support for inclusive learning and information – I write about this latter element more below. This access provision is largely made up of ASL interpreters, and has been provided in Yosemite through its in-house facility for almost forty years; the history of this service is so important it has become significant to the story of the National Park itself. ROSAMUNDE:  Our

Deaf Services program began with a summer seasonal position in 1979 and that position became permanent and year-round in 2016. Yosemite has the first year-round, permanent Deaf Services Coordinator/ASL interpreter-ranger in the NPS . . . [And] Yosemite won the US Department of the Interior National Park Service Park Planning, Facilities and Lands 2008 National Programmatic Accessibility Achievement Award for the Deaf Services Program.

Yosemite National Park, California 161 The Deaf Service was first established through the agreement of the head of Interpreting Services, the Disabled Access Coordinator and the Valley District Interpreter. This led to Maureen Fitzgerald, a local ASL interpreter, being sponsored by Yosemite Natural History Association to be based in Yosemite Valley in 1979, where the service is still based. According to Jennifer Jacob’s 1990 article for Courier – the journal of the National Park Service – Fitzgerald was first noticed when she attended a tour of Yosemite with an ASL signing friend given by the head of interpreting service in 1978.7 By coincidence, Fitzgerald then attended Yosemite with the Berkeley Outreach Recreation Program to participate in disability awareness training. About this time, she was approached by the Disabled Access Coordinator to discuss the embryonic Deaf Service, something the coordinator had considered previously. Information The National Park Service as a whole is largely proactive in developing information for visitors, and as part of this process adapts most information for visitors with disabilities. These adaptations are designed through three main strategies: 1) technologies in Yosemite, which provide alternative forms of real-time communication and information; 2) information provided by human interpretation, again largely through Deaf Services; 3) the website, which is becoming an increasingly important access tool at Yosemite, as it’s promoted by the National Park Service as a whole. Often these three modes of service overlap. According to Alfred, the technologies that are provided by each of the national parks varies, either because of the type of national park they are, or their individual management policies. However, there is a core theme to all the access services provided by the parks, centering on information of physical access to environments, general information about the parks and information for learning. Like most national parks, Yosemite also delivers access through audiodescribed tours, tactile maps, and exhibits, and Brailed materials such as brochures for visitors with visual impairments. Yosemite also provides captioned and audio-described videos, and captioned and audio-described interactive technologies, such as computerized guides for visitors with mixed sensory impairments. There’s also an app that is advancing accessibility in the National Park Service as a whole as part of the University of Hawaii’s UniDescription project, although not all the parks have chosen to use it; a review of this project was published in a recent issue of Access World, by the American Federation of the Blind, and outlines the roll-out of the stages of this project: The Nondescription project (UniD) from the University of Hawaii aims to bring audio description to [cultural heritage pieces] by providing audio

162  Access and inclusion at cultural institutions description for National Park Service brochures and other visual media. In addition, they have produced an open source tool that allows others to produce audio description in a variety of formats. The UniD project also has an app containing audio-described National Park Service brochures available on the iOS App Store and the Google Play Store.8 In terms of its own information provision, Rosamunde explained Yosemite proactively developed its own information services, such as: its accessibility webpage, with accessible information for visitors with travel, accommodation and other information;9 its downloadable Accessibility Guide, with more detailed information about access needs and what visitors can expect to be legally provided;10 its specialist Deaf Services webpage;11 its social media presence, such as the Deaf Service’s Facebook page; its Visitor Center Museum descriptive audio tour for many of its displays. Other examples cited were: ROSAMUNDE:  The bronze view shed displays throughout the park, as well as

the touch display of Yosemite Valley in the visitor center are particularly popular with visitors who are blind . . . [Furthermore,] in late 2017, Yosemite published an audio-described version of its park brochure through the website UniD. Furthermore, at the time of this study Yosemite’s Deaf Service were reviewing and developing a new suite of documentation for visitors. This review is regular, and the service’s provision was guided by updates to the Rehabilitation Act, the ADA,12 and the US Department of Interior’s Accessibility Statement.13 These government guidelines are developed as well as the National Park Service’s constantly evolving internal guidelines, such as those provided by its Accessibility page14 and its Accessibility Task Force Directive.15 At the time of writing this book, the first statistics were also being compiled about the take up of the Deaf Service, although as Rosamunde pointed out it’s notoriously difficult to gather accurate user figures. ROSAMUNDE: 

Yosemite does not [normally] track visitors with disabilities . . . Summer, 2017, brought 3–5 Deaf groups through the Deaf Services program per week. December, 2017, Yosemite will compile the first yearround statistics on the Deaf Services program, but those statistics will not represent all of Deaf visitorship. There are probably still more visitors who are Deaf who do not contact Deaf Services than those that do.

Space and place In common with other similarly large national parks that are known for their natural features and whose primary purpose is conservation, Yosemite

Yosemite National Park, California 163 has two significant issues with its space and place: 1) as previously stated, over 95 percent of Yosemite is designated wilderness, and so the National Park finds it hard to build new roads or paths that make physical access easier; 2) because of the dispersed nature of the National Park, providing physical access to the whole park would mean committing vast resources to access services throughout the park. Despite these difficulties, there are three primary ways that Yosemite provides physical access to its human constructions: 1) by making its physical buildings, including accommodation, visitor centers, and museums physically accessible; 2) by making the wilderness of the park accessible through physical communications, such as trails and highways into and out of Yosemite Valley; 3) by making its website space and place physically accessible to visitors with sensory impairments or who can’t make it to Yosemite, by using accessible standards. The first two of these services are provided by a landscape architect serving as coordinator for physical accessibility at Yosemite. ALFRED:  When

it comes to addressing mobility needs, our buildings offer ramps, elevators, accessible restrooms, accessible parking, lowered counter space at desks, and other “features common to buildings.”

For the National Park Service as a whole, proactive physical accessibility to national parks is a priority, and this is outlined in its Director’s Orders. Although little can be done to these wilderness areas in Yosemite for cultural, conservation, and legal reasons, policies subsequently focus on what is described as Architectural Accessibility. This inclusion concept refers to the architectural design plans, building, updating or changing of all human constructions. Typically, accessible spaces and places in Yosemite are legally mandated as part of a general accessibility program. Again, this development of physical accessibility is typically aimed at Yosemite’s lodges, visitor centers, and museums, but can also refer to its monuments, like its cemetery, which is harder to change. As the Director’s Orders state on this issue, Because of the creation of the official design standards for accessibility, this term carries a legal definition. Buildings or facilities that are not in compliance with official standards are not considered to be “accessible.” This term is used in concert with the concept of “program accessibility.”16 Most importantly, and in common with other national parks in the system, the accessibility of spaces at Yosemite, physical accessibility is developed with help from the National Park Service itself. Logistically, Yosemite’s most accessible space and place is the Yosemite Valley, and in this provision the most significant changes are made to publically accessible buildings.

164  Access and inclusion at cultural institutions However, as Rosamunde pointed out Yosemite also attempts to provide autonomous mobility for people with physical disabilities in other traditionally more inaccessible wilderness areas. Examples of this accessible transport include the park’s bike rental stands that have hand crank bikes for visitors who have impaired legs, and their tandem bikes for visitors who are impaired visually.

Discussion Although it’s a uniquely beautiful national park, Yosemite’s vastness and its many isolated natural features make its physical access difficult to develop. This issue seems to be common in traditional national parks in the US, forcing the National Park Service to develop an evolving strategy of access and inclusion. Consequently, the more general legal implications of being designated a US National Park can both enhance and complicate strategies of inclusion, with no one policy covering all eventualities. For instance, as it’s largely wilderness Yosemite can’t be changed or adapted, and yet its lodges, visitor centers, and museums have to be fully accessible. Subsequently, Yosemite’s superintendents and wardens often have to walk a fine line between developing creative solutions to lack of access and managing visitors’ expectations. Yet, Yosemite’s wilderness is also its main attraction for visitors who are disabled and non-disabled alike, as to conquer many of Yosemite’s trials is to develop inclusive capital. Paradoxically then, it’s possible to reduce inclusion by making the trial of conquering Yosemite’s peaks, glaciers or white waters, more accessible. This paradox also means access to Yosemite’s various environments has to be differentiated, and access to its human environments needs to be managed differently from its natural environments. Consequently, much of Yosemite’s access strategies leading to inclusive capital are centered on the Yosemite Valley, where the greater majority of its visitors stay, and where the activities are less dangerous. And of these strategies, Yosemite particularly relies on two specific methods of implementing access: physical access to its human environments, and accessible communication through guided tours and information technology to guide people around all its environments. For example, as I’ve noted above, Yosemite has accessible physical transportation for its roads and trails; lodges in Yosemite Valley have videophone; visitor centers have audio guides and close captioning; Yosemite’s website has accessible information and educational material guiding visitors; Yosemite’s websites also point out hazards and points the way to access facilities. What’s more, because it has a partially devolved approach to managing access, Yosemite has been able to develop specialisms in particular areas of access and inclusion. This access has itself been designed using proactive strategies, which are themselves originally inspired by creative approaches to reactive situations.

Yosemite National Park, California 165 For instance, Yosemite’s Deaf Services came about when the Head of Interpretation observed the needs of visitors using ASL in the late 1970s. Yosemite then reacted to this new situation by housing Deaf Services in Interpretation, and this provision evolved into an alternative language provision as well as an access need. This redefinition of ASL users as a language group means such services are seen as a pragmatic issue of communication and education needs, as well as an issue of social justice in the round. More importantly, this practical redefinition of ASL also allows Yosemite to employ a full-time ASL interpreter, developing a further layer of inclusion. Consequently, the development of inclusive capital in Yosemite has not always followed a simple pattern of policy development through the National Park Service. Instead, access has evolved organically to serve the needs of visitors as and when they arise. The case of Yosemite can be seen as typical of a traditional National Park. However, how do unique national parks, with very different access needs, develop services that provide inclusive capital. In the next chapter, I discuss access and inclusion strategies at the Statue of Liberty, New York, which can be seen as one such case.

Notes 1 US Department of Labor (1973: Promulgation of Rules and Regulations) 2 Wenger and Snyder (2000) 3 National Park Service (2000, para 1) 4 National Park Service (2000: Goals and Objectives) 5 National Park Service (2006) 6 Yosemite Deaf Service (2017) 7 Jacobs (1990) 8 Preece (2018: online) 9 Yosemite National Park (2015) 10 Yosemite National Park (2018a) 11 Yosemite National Park (2018b) 12 US Department of Justice (2009b) 13 US Department of the Interior (2018) 14 National Park Service (2018) 15 National Park Service (2014) 16 National Park Service (2000)

References Jacobs, J. (1990). Deaf services program prospers in Yosemite. Courier, 35(3), 20–21. National Park Service (2000). Order #42: Accessibility for visitors with disabilities in national park service programs and services. Retrieved January 18, 2018, from www.nps.gov/policy/DOrders/DOrder42.html National Park Service (2006). Management policy. Washington, DC: Department of State.

166  Access and inclusion at cultural institutions National Park Service (2014). ALL IN! 2015–2020 accessibility in the national park service. Washington, DC: US Department of the Interior. National Park Service (2018). Accessibility for visitors. Retrieved May 7, 2018, from www.nps.gov/aboutus/accessibilityforvisitors.htm Preece, A. (2018). The UniDescription project: Seeking to bring unity to the world of audio description. Access World, 19(3), Retrieved March 22, 2018, from www. afb.org/afbpress/pubnew.asp?DocID=aw190303 on the US Department of Justice (2009a). A guide to disability rights laws. Washington, DC: US Department of Justice, Civil Rights Division – Disability Rights Section. US Department of Justice (2009b). Americans with disabilities act amendments. Washington, DC: US Government. US Department of Labor (1973, para 1). Section 504, Rehabilitation Act of 1973 (29 U.S.C. § 701): Section 794. Nondiscrimination under Federal grants and programs; promulgation of rules and regulations. Washington, DC: US Department of Labor. US Department of the Interior (2018). Accessibility. Retrieved May 7, 2018, from www.doi.gov/accessibility Wenger, E. C., & Snyder, W. M. (2000). Communities of practice: The organizational frontier. Harvard Business Review, 78(1), 139–146. Yosemite Deaf Service (2017, March 3). Deaf service. Yosemite, CA: Yosemite Deaf Services Bulletin. Yosemite National Park (2015). Yosemite accessibility guide. Yosemite, CA: Yosemite National Park. Yosemite National Park (2018a). Accessibility. Retrieved May 7, 2018, from www. nps.gov/yose/planyourvisit/accessibility.htm Yosemite National Park (2018b). Yosemite deaf service. Retrieved May 7, 2018, from www.nps.gov/yose/planyourvisit/deafservices.htm

10 The Statue of Liberty, New York, US

Introduction About the Statue of Liberty Liberty is on a US National Monument, including the nearby Ellis Island, the National Museum of Immigration. Together they comprise one National Park. Liberty is also a UNESCO World Heritage Site – a World Heritage nomination for Ellis Island is now pending and is expected to be accepted. Consequently, Liberty has great significance as a site of cultural heritage in the US and beyond.1 Perhaps of all US icons, Liberty is the most recognizable and most embedded in the American psyche, as it’s said to stand for the values of liberty, freedom, and opportunity. Liberty is also an architectural image representing the US to the rest of the world, as the Taj Mahal does in India, the Eiffel Tower does in France, or the Kremlin does in Russia. Consequently, Liberty contains great international significance. Liberty itself is an attractive adult woman, who is of average build and of European appearance. Although it’s in New York, Liberty lies not far off the shoreline of Jersey City, in the exposed Lower New York Harbor. This stretch of sea-water has much the same harsh conditions as the open ocean. On her body, Liberty wears a long, flowing robe with multiple folds, which hangs in two layers, and her whole image is of a classical Greek appearance: the first layer comes from just under Liberty’s long neck to just below her knees; the second layer falls below the first layer, and appears from the Liberty’s knees to her feet – the feet, the front of which are protruding, look as if they are partly invisible beneath the robe. At the feet of Lady Liberty are broken chains, representing “broken shackles of oppression and tyranny.” The robe also covers the upper arms of Liberty to her elbows. Liberty stands in a proud pose, with her head facing up and her stare gazing out to the dark, cold sea-water of the Atlantic Ocean and beyond. The left arm of Lady Liberty is crooked and holds a large rectangular tablet, representing the constitution and laws of the US – the tablet is inscribed with “JULY IV MDCCLXXVI,” the date of US independence, and the

168  Access and inclusion at cultural institutions signing of its constitution. Liberty’s right arm is held straight up at about 70 degrees, and holds a lit torch nursing a tall flame, which is designed to represent enlightenment, and represents Liberty’s official name, “Liberty Enlightening the World.” On the head of Liberty is medium-length, slightly wavy hair, and atop of this hair is a crown in two layers: the first layer has a single row of vertical bars; the second layer is seven spikes pointing out at angles on top of the first layer, facing up and outwards, Liberty is hollow and is built around a heavy nineteenth century wrought-iron frame, or armature, which is covered by a copper skin 3/32 of an inch thick – this skin is the thickness of just two penny coins. As the copper is weathered by the moist wind and salty sea-air, the oxidized outer layer gives Liberty a distinctive light green-blue color. Liberty stands on a pedestal taller than herself. The pedestal is a tall building in classical turn-of-the-century US architectural style, which has a broad bottom, and a slightly narrower top holding Liberty securely in place. Inside the pedestal, there are six stages of stairs, which take up most of the insides of this building. The upper half of the pedestal also has, at the fourth level, porches on all four elevations behind tall three-bay colonnades, and level six has doors to an observation deck. This observation deck provides harbor, city, and open sea views. The pedestal itself sits atop historic Fort Wood, which, seen from high above, has the shape of an eleven-pointed star. The US Army continued to occupy the island and managed Liberty until that responsibility was turned over to the National Park Service in 1933. The building and base on which Liberty sits has a steel-and-concrete inner frame, a concrete foundation and a thick Deer Isle Granite skin – the same granite used to build Rockerfeller Plaza in midtown Manhattan. Outside the plinth, the rest of Liberty Island is landscaped with grass, trees, and paths leading to Liberty, and a pier for the ferry landings. The ferries carrying staff and visitors to Liberty, land to the south-west of the island, and Liberty is on the east of the island. Liberty can only be approached by pathways from the ferry pier to the pedestal. Inclusion and access at the Statue of Liberty I gathered information from personal contact at the Statue of Liberty (Liberty) and through communication with relevant personnel. My contact at Liberty was a deputy superintendent, John, who allowed me to use his real first name, and who had responsibility for disability access in his portfolio of responsibilities. I emailed John and sent him my regular letter for the project that provided informed consent and the set of questions I was going to ask him.

The Statue of Liberty, New York 169 By agreement, I interviewed John via telephone, and he also later sent me policies relating to the management of Liberty. After writing up this chapter, I also sent John the original, pre-copy-edited manuscript and asked him to check the report for accuracy. John came back with several changes, which enhanced the writing. So, what difficulties and advantages does Liberty have when providing access to visitors with disabilities? Four access disadvantages at Liberty are: 1) although Liberty is tall, it is unusually shaped and has an intricate framework that makes it difficult to enter and climb for even the most able-bodied person; 2) the building itself, being a UNESCO World Heritage Site, can only be altered only slightly and only under the strictest conditions; 3) being on an island, Liberty can only be accessed by public ferry boat and private landing piers, and when weather is bad this may have to be closed; 4) entrance to Liberty is via a pathway that runs across the island that hosts it, leaving the visitor exposed and having to travel without private transport to its plinth and museum. However, four access advantages at Liberty are: 1) Liberty has a strong story, world-famous image that makes it a place where people, disabled and non-disabled, want to visit no matter how difficult the conditions; 2) as it’s a National Park under the US Department of Interior – a government department – it’s accessibility is supported by the National Park Service; 3) Liberty is well resourced, and can draw on public funds, concessions and private sponsorship for help for financing access; 4) like Yosemite in the previous chapter, it draws on policies and access standards from the National Park Service. In line with other monument-type national parks, John told me during our interview, all accessibility policies must conform with the Architectural Barriers Act, which contains the Uniform Accessibility Standards. Although largely based on developing an accessible environment, the NPS Management Policy states: 1.9.3 Accessibility for Persons with Disabilities All practicable efforts will be made to make NPS facilities, programs, services, employment, and meaningful work opportunities accessible and usable by all people, including those with disabilities. This policy reflects the commitment to provide access to the widest cross section of the public.2 So, how does Liberty and Liberty Island use this policy to develop inclusive capital in visitors to its site?

Inclusive capital at the Statue of Liberty Bonding In common with other national parks, superintendents at Liberty Island and Liberty don’t have special strategies that encourage bonding between family

170  Access and inclusion at cultural institutions and friends who are disabled. What’s more, Liberty’s administration doesn’t yet run formal tours for people with disabilities, although it offers American Sign Language (ASL) interpreters for visitors who need them – these guides need to be booked-in in advance, as they’re provided by an outside agency and follow the regular tours with the signing visitors. As it’s still developing its visitor strategies, the office running access to Liberty has previously had to be reactive to situations it’s found itself in. This means it’s had to develop creative strategies for visitors with disabilities as and when visitors with disabilities arrive to comply with its management policy. Despite a lack of formal strategy of developing bonding, Liberty’s entry policy has two advantages that make its current reliance on bringing families and groups of friends easier. Firstly, its crown tickets are limited to four per credit card and can only be purchased on the official website to be fair to the greatest number of visitors, and was done to prevent illegal reselling of tickets. Movement of groups through the monument is also managed by timed ticketing. Secondly, Liberty’s popularity and its limited space makes booking visitor tickets ahead advisable, and people often plan to come weeks if not months in advance. Consequently, visits encourage small family and friendship groups coming together, meaning visitors with additional needs have longer to research and arrange support at Liberty. What’s more, Liberty’s website has information about the facilties available for people with disabilities, and also contact details to arrange support – this is discussed more below under the sub-heading Information. For example, Liberty’s website recommends that small groups reserve their tickets as far in advance as possible, with tours only allowable through the authorized concessioner; this is a ticket agent. Once on the National Park, all tickets give general entrance to the island but not the building on which Liberty stands, or Liberty itself. Fewer tickets are available for the main building and Statue of Liberty Museum inside the pedestal, and even fewer are allowed to visit Liberty or its crown. However, despite these contact details, people with disabilities are still able to arrange their own visits to Liberty through regular bookings, and ask for access facilities once there. Although there are protocols arranged for a range of non-regular visits, the superintendents at Liberty sometimes find themselves in unconsidered situations. For example, in his interview John described a recent visit by a couple who were blind, something they’d never encountered before. As Liberty allowed limited visitors to the crown because of its emergency evacuation procedures, it could not help both visitors access the crown at the same time. As John explained: JOHN:  The

helical stairways, the double helix, in from the level seven up to the crown itself is very tight and the steps are wedge shaped. So, they’re going to be difficult to negotiate to begin with, and probably we were

The Statue of Liberty, New York 171 afraid it was impossible for a guide dog. And coming down would probably be a whole lot more difficult. So, what we did in that case, we gave them two rangers and took them up one at a time. One in the couple stayed behind with the dog when we took the other one up, led by one ranger behind and another range to assist to place their hands. And then they switched over and the other half of the couple went up. They had a wonderful time, they really loved it. After the couple’s unexpected visit, superintendents at Liberty felt they should be more proactive in developing a standard policy for similar visits in future. To begin with, they consulted the compliance officer at the National Park Service central offices, who had advised them on previous access policies. Following internal consultation, Liberty’s administration contacted an organization called the Seeing Eye; a private, non-profit organization that was established to train and provide seeing eye dogs to the blind and now run advocacy programs as well. The Seeing Eye staff member was extremely interested in the park’s problem. They sent along two representatives, one of whom, named Ginger, was herself blind, to consult with the staff and experience for themselves the challenges that a blind person would face in visiting Liberty. Ginger both carried a white cane and had a labrador retriever guide dog, similar to the couple that visited, and so could pinpoint issues arising from the way administrators handled this previous visit. The superintendents at Liberty particularly wanted to know what constraints and communication issues they needed to manage, which could then be written into management policy. JOHN:  So

Ginger with the dog went about a third of the way up, and her dog was very small for its breed, only about fourty five pounds mature, and they’re breeding them that way because they’re more flexible. While Ginger believed that her dog could make the entire climb she felt she only needed to go a short distance to understand the physical constraints. Ginger said she wouldn’t recommend allowing a guide dog to make the climb for a number of reasons.

During the visit, the Seeing Eye advisor also made several other access recommendations, and provided a little training for some park staff on proper techniquers and etiquette for assisting blind persons. Seeing Eye then followed up with a written report with recommendations on working with people with sensory impairments, and communicating the needs of people with disabilities in national parks. John explained in our interview that new guide training would be the first in a series of sessions they planned, as the superintendents at Liberty developed a more robust access strategy. This strategy would also include

172  Access and inclusion at cultural institutions making staff available to accompany people with mobility needs getting into the crown of Liberty. Learning At the time of my interview with John, learning strategies for developing inclusive capital at Liberty were at a more developed stage than its approaches to bonding. Some of Liberty’s learning strategies were historical, although John explained they were also in the process of being re-invented and strengthened. However, as with its bonding strategies and limited staff resources, Liberty will not be able to provide specialized courses and tours for people with disabilities. Apart from the ASL tours of Liberty Island – which are simply the regular tours signed and have mixed hearing and signing visitors – there is currently no bespoke provision. Although they aren’t planning formal separate courses for visitors with disabilities, the superintendents at Liberty are adapting existing tours to make them inclusive. In our interview, John told me that a disability coordinator for the National Park Service was consulted on educational provision, and this inclusive provision will rely more on technologies. For instance, John explained they were in the process of developing a new audio tour, with both an audio-described tour and a visually signed (American Sign Language) tour for visitors with sensory impairments. These tours are mostly to be based on mobile technologies. JOHN:  And

the tours are very extensive, and we’re going to have them in fourteen languages at some point. So, that’s in process right now [since my study, these tours have started].

John also told me these tours would be funded and managed by the park’s non-profit partner – Ellis Island Foundation (SOLEIF), an organization that was founded to fundraise for the restoration of Liberty in the 1980s. Since its inception, SOLEIF raised nearly US$7.5 billion for the benefit of the park. SOLEIF contracted with a professional audio tour developer to produce the new tours and provide on-site distribution services. In addition, the National Park Service has employee specialists with disabilities who would provide advice and give feedback about what will be the finished tours. JOHN:  We

have this one guy who’s stationed out, he’s totally blind. He’s been doing a lot of work for us, and he’s coming out to help us with the audio-described tour.

In addition to its audio tour, Liberty has sub-titled and captioned its orientation film, which is run on a large television on Liberty Island for visitors.

The Statue of Liberty, New York 173 For people who can’t visit, who have yet to visit or who have visited and want to relive their experiences, Liberty also has an app. In the past, John told me, the app wasn’t too successful, because there was a high turnover of staff directing the design of the app, meaning it became somewhat of a mish-mash. John also told me the app’s accessibility is limited, and it’s something they also plan on improving. The design of the audio tour is more successful, John felt. SIMON:  How long has the Audio Tours been available at the moment? JOHN:  This will be the third one. After 9/11 [a terror attack on the twin tow-

ers of New York City, on September 11th 2001], our two consessioners got together and did a kind of down-and-dirty that was kind of OK. In 2007, SOLEIF took the initiative to develop a more professional audio tour which was quite good compared to the previous version, but had become problematic in a number of ways. The contract for that tour provider would expire at the end of 2017, so in 2015, SOLEIF, recognizing that significant time would be needed to produce a replacement tour, issued a Request for Proposals. Three vendors submitted proposals, including the incumbent, and Acoustiguide was selected. The park and SOLEIF worked closely with Acoustiguide to create the new product. The Audio Tours, are about 45 minutes. And you can take longer if you want; there’s a kind of drill down, for the person who wants to learn more. As well as its electronic technologies, Liberty also has older technologies that are enjoyed by people with disabilities, as they’re found to be inherently accessible. These technologies weren’t specifically designed with accessibility in mind, but they are enjoyed by a wide range of visitors. For instance, at the bottom of Liberty’s pedestal, there’s a museum describing its history, and the history of what is now Liberty Island. In this museum, there are also two full-size fully accurate copper replicas of parts of the monument itself: there is a reproduction of Liberty’s face, which is around seven feet high from its chin to the bottom of the crown; and there’s a reproduction of one of the feet, with a sandal and the enormous toes. These replicas were meant to give a sense of the scale of Liberty to all visitors. As they’re so robust, both of these replicas have been touched, climbed on and used as sensory pieces over the years, during many visits. As John explained, “They are really, really popular with the blind and with people with limited vision. They really, really love these things.” In addition, there is also a bronzed three foot tall (approximately a meter tall) replica of Liberty in the museum. The quality of this replica Statue of Liberty was described after my interview with John by Barry Ginley, of the Victoria & Albert Museum, London, who himself has no light perception: BARRY:  Museum

– [The] Bronze [scale model of the] Statue of Liberty: This is one of the best models I have been able to touch, as the detail and size

174  Access and inclusion at cultural institutions of the model is ideal for interpretation. The model allows the visitor to interpret small details such as the torch, as well as understand the folds of the gown. Despite its mainstream approach to educating for inclusive capital, there have been times when Liberty has reached out to children with special needs. Before Liberty Island closed for Hurricane Sandy in Fall 2012 – a hurricane that caused significant damage to New York and New Jersey – each Summer Liberty’s administration worked with Lexington School for the Deaf, New Jersey. This relationship engaged the children by bringing them to Ellis Island to work on the natural landscape and gardens, to engage them with the island and allow them a sense of inclusion. JOHN: And

we would take them on tours of Liberty, of other parks, we would take them to the beach, and do stuff like that. And that’s the only thing we’ve done quite like that. I’d like to be able to resurrect that. SIMON:  And did the children really enjoy coming along? JOHN:  Yes, they did. Information Liberty is largely proactive when providing information. As with all national parks in the US, Liberty’s information provision is a key strategy for developing inclusive capital. The provision of information for visitors with disabilities is largely based on two strategies: 1) the translation or adaptation of information that is available to all on the island, or on the way to the island; 2) providing information available before booking, to allow the visitor to assess the risks they take and to plan for access services according to their needs. On Liberty Island, and as previously stated, Liberty can arrange contracted Sign Language signers, for visitors who provide enough notice to its administration – in extreme cases, this notice can be as short as a day, although John told me ideally they need at least a week’s notice. The park also has a small number of permanent staff who are capable of signing American Sign Language, although they’re unable to do tours as they aren’t fully trained. As John also told me during our discussion, after their consultation with Seeing Eye, Liberty will also have several Park Rangers trained in the assisting the blind; although, at the moment there’s nothing formal arranged and they have to speak to most visitors who can’t access print information, or provide print and graphic information for those needing it. However, Liberty is considerably more proactive with other forms of access to information contributing towards inclusive capital. For instance, Liberty’s pedestal and base have induction loops fitted, allowing narrations from tours to be transmitted directly to some (although not all) digital hearing aids.

The Statue of Liberty, New York 175 What’s more, Liberty Island now has a bronze scale model of the island that was specifically designed as an aid for people who are blind; there is a counterpart model on Ellis Island, which provides graphic information on the island for all visitors. As my colleague, Barry Ginley, pointed out about these maps after his visit to Liberty Island: BARRY:  Maps –

Both of the maps on Liberty and Ellis islands provide the visitor with a good understanding of the layout of each island. The scale of the maps are generous, the detail of the buildings and their locations highlight that a long walk may be necessary, and showing the tree-lined routes gives an added perspective to someone who’s unable to see.

Importantly, and in common with other national parks in the US, Liberty has accessible and inclusive information for visitors with disabilities on their webpage. Liberty’s main website is accessible to people with sensory impairments, through screen readers such as JAWS – which reads text labels of images for people who cannot access printed type. The information on this website is of three types. The first type is motivational statements, encouraging visitors with disabilities to visit Liberty, welcoming inclusion at Liberty Island. This type of information also lets visitors know the health and safety risks at Liberty, something that is important as the unchangeable nature of the monument holds perils for everyone. Subsequently, the visitor is prompted to bear in mind logistical issues that need to be considered before visiting. The second type of information is more practical, and divided according to need. These needs are: transport to and from Liberty by ferry, around the island and public transport to the ferry terminals in New York City and Jersey City; accessible arrangements for security screening – this is particularly important since the terrorist attack on the twin towers in 2001; accessible support and accessible areas around Liberty, building and museum. The third type of information is contact points for the staff and policies relating to disability access at Liberty. This last form of information is vital for booking accessible services at Liberty, and is part of a protocol that is advertised at Liberty, although the numbers are not monitored or evaluated: SIMON:  And

if I was going to book a tour, what would be the process? Say, I had friends who were all ASL signers, how would I go about approaching booking a tour? JOHN:  To our website first of all, and the ticketing website should have information like that, about the availability of sign tours. SIMON:  How many ASL tours are asked for every year? JOHN:  A handful. Maybe two a month . . . SIMON:  Do you know how many visitors, even approximately, a year have a disability?

176  Access and inclusion at cultural institutions JOHN:  We

would never know unless we stood around and counted people, because of course we don’t ticket them that way, they just buy tickets for the boat, so we wouldn’t know.

Space and place The most proactive form of inclusive capital development at Liberty has been to make the spaces and places in and around Liberty Island physically accessible. This strategy has required a great deal of money, and taken time to implement, as accessibility was a part of an extensive rehabilitation of the pedestal of the Statue of Liberty in 2011–12 for life and safety code requirements. What’s more, efforts have been made to develop physical accessibility to the spaces and places of transport, itself a highly important experience when visiting Liberty. JOHN:  I had

an organization, the Access Board, they visited here in 2013, with very high level people, they are really big people in their professions, and many of them have some kind of disability. And I toured them around the park, and they were very pleased with what we do. Including the architect, Michael Graves, who was in a wheelchair and had a twenty-four hour attendant with him. He was quite pleased.

And there have been ongoing efforts to improve accessibility at Liberty ever since. Importantly, the upgrading of the pedestal from 2011 to 2012 was the first time, through a combination of two elevators and a wheelchair lift, that people with impaired mobility could get from the ground floor to the sixth level of the pedestal. As John told me during our interview, “which is quite a ways up.” This made it possible, for the first time, for people with mobility problems to make it to the top of the pedestal, and at that level, it’s just below Liberty itself. As John described it: JOHN:  If

 

you have the right wheelchair and the right assistance, you can get right out onto the observation deck, and we’re pretty proud of that, to get a person right out, which is something close to the full experience. It’s absolutely impossible to carry a person up [into the Statue of Liberty], although that’s not a word I should be using . . .    Now you can see through openings, there are big glass openings in the ceiling of the sixth level that look up into the structure of Liberty, which is very instructive.

It’s important, John told me, these accessible features should constantly evolve. Consequently, SOLEIF is now building a new museum on Liberty Island that will be fully accessible as well, including a roof deck, a roof observation deck, which will have another elevator to get inside. However, there are some issues that remain intractible. Due to the nature of the island, which was chosen for its remote location, there are still

The Statue of Liberty, New York 177 problems that need to be solved to make the island, and therefore Liberty, more accessible. John told me that because of the tides the gangways can be very steep between the landings and the boats. Although these ramps are wide enough for visitors with wheelchairs they can’t always independently access the boat or the shore because of the extreme angle of the gangways, and need to be assisted by an employee of the ferry company. As John explained, this “mostly works out fine. The facilities onboard the ferries are accessible.” But the issue of the tides is very common throughout the transportation industry and is not addressed by any regulation or law. Accessibility on land and on the vessels is well regulated, but the transition between the two is not. Importantly, inside Liberty itself you can see Liberty’s iron frame from the sixth floor of the pedestal, which is the view many non-disabled visitors have when they visit Liberty. However, there are very few places where you can actually touch it if you are a person with impaired vision. As John pointed out, one of the problems that makes Liberty inaccessible through touch is graffiti. To prevent people writing graffiti, Liberty has to be covered on the inside with transparent panels protecting the structure from access in vulnerable locations. Subsequently, only facsimiles of the inside are available in the museum, not in situ. JOHN:  So,

what we have in the museum, is you can touch the elements of the structure, and you can understand how the armature is connected to the actual copper Statue of Liberty itself, and how these armature bars hold the whole thing together. So you can’t do it inside, but you can do it in the museum. In the stairways between the ground level and level six a lot of the structure is accessible. And it seems the tie rods and these enormous nuts, these conical nuts that are about 20 inches long, and the tops are about 20 inches wide, you can touch those things. We don’t mind you touching them.

Discussion Liberty, like many high-profile monuments, has unique problems that many other monuments don’t. Firstly, it’s only accessible via ferry. Secondly, Liberty has an irregular shape and a historical iron frame inside that can’t be changed because of its iconic status, largely because it has little space for an education center. These issues make it harder to develop physical access that develops the inclusive capital of its visitors. It also has limited sites with similar issues and a mature access strategy that it can copy as a model or frame of reference. This means superintendents at Liberty on at least two occasions had to be reactive to situations they’ve never come across before, although this has led to proactive strategies afterwards. As John told me, “The blind couple with crown tickets was something we hadn’t anticipated. The induction loops came about because of a deaf advocate over ten years ago.”

178  Access and inclusion at cultural institutions Nevertheless, Liberty also has three significant advantages that allow its access and inclusion strategies to develop quickly, and make it an interesting case of inclusive capital. Firstly, as it’s a national icon, Liberty’s motivated to develop inclusion for its visitors and hold itself up by the standards it was created to uphold. This means it’s reached out to others to improve its accessibility over a period of thirty years, before the Americans with Disabilities Act was passed. Secondly, and most significantly, being a National Park it can get advice and resources from its national offices, and draw on staff and resources from other sites. Although these problems won’t be exactly the same as these other sites, they have the same management strategy and the same national access policies that drive forward access and inclusion. This National Park Service status has also allowed superintendents at Liberty to place emphasis on being proactive in developing its information and its space and place. For instance, its accessible website is modeled on other national parks, and it links to national policies on the National Park Service’s main website. What’s more, although its building is relatively restricted and can’t be changed easily and without considerable planning and resources, it has taken advantage of rehabilitation projects to develop accessibility. Thirdly, the timed visits at Liberty mean tickets have to be bought for the statue sometime in advance, and visitors with disabilities contact superintendents some while in advance to arrange access. This forward planning results in families and friendship groups feeling more minded to book ahead, giving children and younger adults the chance to bond, and Liberty staff more time to plan for their visit. As previously stated, Liberty is a unique example of access and, subsequently, often staff have to be reactive in providing access and inclusion. The next case is of Boston Museum of Fine Art, a more traditional museum with more space and the possibilitiy of developing bespoke access services. However, being larger and having more capacity to change its physical access also means it has to be creative to develop inclusive capital.

Notes 1 Reynolds (2016) 2 National Park Service (2006, p. 17)

References National Park Service (2006). Management policy. Washington, DC: Department of State. Reynolds, C. (2016, June 27). Think you know the statue of liberty? Think again. LA Times.

11 The Museum of Fine Arts, Boston, Massachusetts

Introduction About Museum of Fine Arts, Boston Museum of Fine Arts, Boston (MFA, Boston) is at 465 Huntington Avenue in Boston,1 and welcomes over a million visitors a year. The Museum is comprehensive and arguably the most important art museum in the US to the north of New York and to the east of Chicago, and one of the five most important in the US. Its collection is of international importance, and the Museum also has great significance as a place of US art education. The Museum’s current twelve-acre complex of buildings and gardens is in Boston’s historic Fenway suburb, in the city’s former marshland, which borders the Back-Bay Fens – the rear of the Museum itself is bound by the wide Fenway road splitting the complex from the Fens. As the crow flies, MFA, Boston lies between downtown Boston and the town of Brookline, the latter of which also serves as a suburb for workers in the city. MFA, Boston is at the center of one of the city’s cultural quarters and a popular residential neighborhood, with bars, cafes, and restaurants; its neighbors include Harvard Medical School, Northeastern University, Huntington Theater, Jordan Hall of the Northeastern Conservancy, Boston Symphony Hall, and the Isabelle Stewart Gardener Museum. For transport, MFA, Boston is well-served by sidewalk, road and rail, sitting between wide highways and having an overground station on the Green Line of the T – the T is the under-and-over-ground metro rail network of light trains and trams that serves an area in and around Boston. This transport network has built up around the MFA, Boston since its foundation, with its presence making the area as popular as the attractions that now surround it. The main structure of the current MFA, Boston has a cream-colored neoclassical façade in the Palladian style on its Huntington Avenue side, and has galleries, offices, and classrooms over four floors. The main doorway to the Museum is at the top of external stone steps, and the building is framed by a portico roof supported by Doric columns, ornate carvings, flag poles, and ramps on either side.

180  Access and inclusion at cultural institutions The Museum’s collection is almost a half-million pieces strong, although in common with many similar museums, many of these pieces are in storage and rotated. MFA, Boston’s comprehensive collection includes pieces from Nubia, a significant archaeological compendium from Giza, Egypt, Paul Revere’s silver, sets of rare New England furniture, and a significant Asian and European collection – the latter of which has a newly expanded Dutch collection. MFA, Boston also shares more than 22,000 photographs with the public, and has a renowned selection of paintings from America’s foundation to its present day. What’s more, at the time of writing 13,000 images of pieces from its collection are featured on the well-known online repository, Artstor. The history of MFA, Boston is unusual, in that it began with a collection looking for an institution to house it, rather than an institution looking to build a collection within it. Subsequently, the need for a museum was developed out of Massachusetts’ place as the intellectual and educational heartland of the US. In 1869, a number of institutions and individuals appealed to the city and Massachusetts state to house several smaller art collections that had no exhibition space. These collections included: a bequest of armor from Boston Athenaeum; a collection of plaster reproductions from the Social Science Association; a collection of engravings from Harvard College and architectural casts from The Massachusetts Institute of Technology. In 1870 the city legislature granted MFA, Boston its original charter, although the only support either administrations provided was the public gift of a plot of land on Copley Square. The foundations for the first museum were dug in the square shortly afterward, and the first museum building was opened to the public on Independence Day, 1876. This building was a four-story red-brick, neo-Gothic structure, and remained MFA, Boston’s home until the first decade of the twentieth century. The first incarnation of the MFA, Boston had around 5,600 pieces from its combined smaller collections, although this number expanded rapidly in its early years. In its first year, the Museum also founded the School of the Museum of Fine Arts, which still exists today and is now one of the oldest art schools in the US. Following a vote of the Board of MFA, Boston in December 1899, it was decided to move the Museum to a bigger site, to house its rapidly expanding collection more comfortably. Following this vote, its current twelve-acre site between Huntington Avenue and the Fenway was bought, and a Building Committee was formed for the new ambitious project. In April 1902, foundations were dug for the new MFA, Boston and a smaller, temporary construction was made for testing. In November 1909, the new building was completed and opened to the public at a total cost of around 2,900,000 dollars: 1,600,000 dollars were spent on the Museum’s buildings; 1,200,000 dollars were spent on land and improvements; and 100,000 dollars was spent on moving and installations. This money

The Museum of Fine Arts, Boston 181 was raised from the 1,750,000 dollars from the sale of the original Copley Square building, 600,000 from donations, and a 500,000 dollars from an endowment fund. In the century that followed, numerous other wings and additions were made to the Huntington Avenue complex: the Evans Wing for Paintings was opened in 1915; between 1921 and 1925 John Singer completed a mural in the Museum’s Rotunda and Colonnade – these are now the Ruth and Carl J. Shapiro Rotunda and Colonnade murals, and were restored in 1999; in 1928 the Decorative Arts Wing housing European and American pieces was opened; in 1970 the George Robert White Wing was completed, adding research, education and dining facilities; and in 1981 the West Wing was opened adding more facilities, including an auditorium. In 1999, a contemporary architectural practice was commissioned to reimagine, extend, and renovate much of MFA, Boston’s complex of buildings and its landscape. This new plan was the biggest building project since the original Huntington Avenue site was conceived, took over ten years to complete and mostly included glass-and-steel extensions. The result of this commission appeared in several phases: The Art of the Americas Wing and the Ruth and Carl J. Shapiro Family Courtyard opened in 2010; the reconstruction of the West Wing – now the Linde Family Wing for Contemporary Art – was opened in 2011; and upgraded galleries of European, Asian, and African art opened in 2013. During construction of the Art of the Americas Wing, both the Fenway and Huntington entrances were reconstructed with ramps on either side of the stairs. The interior lobby and the area right outside this main entrance were also changed to eliminate stairs at the same time – the Huntington lobby had previously been the only non-wheelchair accessible space in the building. This new project radically extended the floor-space of the MFA, Boston from just under 485,000 square feet to over 615,000 square feet; this new design of the upgraded Museum was recognized in 2011 by a Royal Institute of British Architects international award for architectural excellence. During MFA, Boston’s cultural evolution, the School of the Museum of Fine Arts continued to develop its art education remit, and evolved to promote a more academic role. In 1927, the School was also given its own building nearby and, in 1945, although it remained part of the institution of MFA, Boston, it became affiliated with Tufts University. The School eventually became a full part of Tufts in 2016 yet still remains connected to MFA, Boston – it’s unique in the US in this respect. Inclusion and access at Museum of Fine Arts, Boston My relationship with MFA, Boston is longer than that held with the other two cultural heritage sites featured in this book. I was first made aware of access and inclusion at the Museum through American colleagues in 2004

182  Access and inclusion at cultural institutions in my early research trips to the US, prior to gathering many of the human case studies. After emailing and being introduced to those working on accessibility at MFA, Boston, I became familiar with a number of initiatives, particularly relating to its use of technology. Then, in Fall 2011, I was offered a guided tour using apps based on a mobile device for people with access needs. In Fall 2017, I was again put in touch with the officer in charge of access at the Museum through a colleague in London and emailed her a list of questions and an informed consent letter – in the rest of this book, I call this officer Cornelia. Like Rosamunde at Yosemite National Park, Cornelia replied with answers via email, and provided other relevant policy documents and web links from MFA, Boston, which she felt would help. That Fall, I also reviewed information about the MFA, Boston’s access policies and provision on their website through an extra search of webbased information, and built my case using both sources of information. As with the other two cases, I then sent the chapter back to Cornelia for comments and fact checking. So, what difficulties and advantages does MFA, Boston have when providing access to visitors with disabilities? Three access disadvantages at MFA, Boston are: 1) being attractive and historically important to the architectural history of Boston, its buildings can’t be physically altered without going through rigorous planning consent; 2) although it has modern wings, its evolution means that physical accessibility differs throughout the Museum, with the older part of the building being more difficult to move around – the older building does have power assisted doors throughout, though the corridors and elevators are smaller; 3) like many large regional art museums throughout the world, its pieces are preserved behind barriers, glass screens, cases and alarm systems, and the general public rarely get chance to get close to its exhibits. However, four access advantages at MFA, Boston are: 1) it has funding from both private and public sources for access, which means it can financially resource regular access and inclusion initiatives, and research access and inclusion issues; 2) external initiatives like Artstor can make images of its pieces accessible to people beyond the Museum, and its website provides information that make pieces inclusive to some visitors who cannot physically visit; 3) although its historical buildings are more difficult to maneuver in, its modern building phases allowed its modern galleries to be more manageable and pieces to be exhibited using a more sensitive method; 4) although it has a unique collection, it had proactive models of access and inclusion from other large regional art museums with similar issues as a point of reference.2 Cornelia explained that MFA, Boston started to proactively design services for visitors with disabilities in 1978 through its Education Department (Education). Although there was no proactive development of policy at the

The Museum of Fine Arts, Boston 183 time, Access Services (Access) began with a grant for a temporary position to improve inclusion of children with disabilities in school tours. From this beginning, further funding allowed the access role to become a permanent part-time position. This position subsequently remained in Education, and provided learning, information and inclusion throughout the Museum. Since these early initiatives, this provision grew and there are now two staff positions that have responsibility for providing access and inclusion: Cornelia is the Manager of Accessibility, and has been full-time and permanent since September 2014 (for two and a half years); and Martha is the Accessibility Coordinator, and has a permanent but part-time position. Both these positions were originally formed for Education, but moved to Member and Visitor Services (Member Services) in 2008. Nowadays, access and inclusion at MFA, Boston is shaped by a policy document called the Access Strategic Plan (the Plan), which effectively guides Cornelia and Martha’s working practices. Most important amongst these roles is Cornelia’s position as manager, which is governed by three wide ranging roles. Firstly, Cornelia’s position has three main responsibilities with regard to the Plan: 1) she has overall responsibility for accessibility at MFA, Boston, and she works with all departments across the Museum to implement the Plan; 2) Cornelia has responsibility for ongoing developments of the Museum’s Plan with a cross-departmental team and input from a wider staff circle and the Access Advisory Board; 3) during the time of my study Cornelia also had oversight for implementation of the Plan – it’s important to note, the MFA, Boston is now developing a whole-museum strategic plan called MFA 2020, and part of the role of this new plan will be to support integrated Museum-wide inclusive practice. Secondly, Cornelia works proactively to integrate access and inclusion throughout MFA, Boston by leading two important bodies, which gather intelligence as a part of this process: 1) the long-serving Access Advisory Board, which is made up of individuals with disabilities and advocates; 2) the Access Team, which is an internal team started in 2017 and has representatives from all public-facing departments across the Museum. Thirdly, Cornelia and Martha also trains general staff and volunteers who work across the MFA, Boston to be able to support people with disabilities during regular visits to the galleries if needed. In addition, Cornelia and Martha also train and supervise specialist volunteers who lead three specialist initiatives: A Feeling for Form (designed especially for people with visual access needs), A Hands Reach to Art (a program delivered and interpreted in American Sign Language), and Access to Art tours (designed for visitors with a range of disabilities). These three initiatives are discussed in more detail below. Cornelia and Martha’s training regime allows members of staff and volunteers to cover much of the day-to-day provision in MFA, Boston’s galleries,

184  Access and inclusion at cultural institutions whilst Access staff can focus on more targeted provision and policy development. Subsequently, access and inclusion policies at MFA, Boston have largely evolved to become a combined proactive and reactive delivery-based system, and Access now has a number of carefully targeted services alongside gallery support. Training mirrors need. Both access staff will step in and lead tours, etc. as needed . . . [the] goal is to have a foundation of accessibility to make MFA as inclusive and accessible as possible, while recognizing that having separate or additional programs and opportunities are important both short and long-term for some individuals. In her part-time role, Martha also has two more focused roles. Firstly, Martha coordinates Feeling for Form and Access to Art tours, and corresponds with program partners. Within this remit, she also guides, tracks, maintains and trains staff and volunteers in the use of accessible listening devices and similar technologies for these programs. The Assistive Listening Devices may be used for any type of program, talk or event in the galleries, led by anyone from curators to studio instructors to volunteers leading drop in tours, etc. Secondly, Martha steps into tours and other forms of training and, like Cornelia, she trouble-shoots and steps into tours when the situation dictates; these secondary roles depend on time and her work commitments in Member and Visitor Services. So how does MFA, Boston’s Plan develop practice and inclusive capital?

Inclusive capital at Yosemite National Park Bonding In common with Yosemite and Liberty, MFA, Boston has no specific strategy for encouraging bonding, although like the National Park Service it encourages independent visits in groups of friends and families. What’s more, MFA, Boston has chosen to specialize in targeted forms of access, a strategy founded on removing barriers to inclusion and access, including: power assisted doors, assisted listening, staff training on basic accessibility and communication, and specific programming of inclusive initiatives. For instance, Cornelia explained she was proud of the way MFA, Boston expanded access to what’s regarded as a visual institution for people with low or no vision. Although she accepted that the service in the Museum still needs improvement, it’s created a great deal of flexibility for visitors who drop in without notice. In such circumstances, visitors get a sighted guide to

The Museum of Fine Arts, Boston 185 help them navigate the Museum, and can use MFA, Boston’s mobile guide based on a mobile device. For a guided tour with someone who is trained in all the tools and approaches to making our collection accessible, we can turn requests around within a day (unless the request comes on the weekend, and then is dependent on who is here). MFA, Boston also provides audio describers for members of the Museum who go to events such as lectures and artists’ demonstrations. Access also supports other programs as well as more mainstream activities, which Cornelia explained “could be a school group tour, or a gallery talk or something else.” What’s more, MFA, Boston also holds a series of mainstream open houses intended to be welcoming and inclusive of everyone. During these events, visitors with little or no sight may go on a supported mainstream tour and are guided to a concert, for example, or participate in an accessible artmaking activity designed for all. The Museum also has a monthly tour with different themes, and sometime-tours with set times people with disabilities can sign up for. According to Cornelia, these tours are popular with visitors who don’t want to schedule something on their own, or who like to come regularly to the Museum. Sometimes people have a hard time believing they can request a tour at any time for any part of the Museum. Generally, they get quite excited when they realize that more is possible . . . We have had several people decide to become members, even though the Feeling for Form tours are free, after going on tours . . . I am also quite pleased with the approach we took to the mobile guide. Learning As plans for inclusion at MFA, Boston began in Education, the Museum’s structured teaching strategy remains the most proactive form of access and inclusion, and each of these initiatives remains free to visitors. What’s more, unlike the National Park Service, there is a concentration in the Museum on programs that emphasize separate access provision based on individual physical and psychological needs. In these programs, there is also a proactive emphasis on providing support for visitors with visual impairments, as it’s felt the visual arts are least accessible to this community. Strategically, MFA, Boston mostly promotes education through alternative communications and sensory access to pieces through a variety of means. This access includes: direct touch, tactile materials, audio description, and multi-sensory instruction – the latter is largely based on touch in concert with sound, poetry, scent, movement, and so forth. Members of staff also develop educational and school tours, which are primarily accessible to people with extra sensory impairments. The design

186  Access and inclusion at cultural institutions of these initiatives seems to differ for adults and children: adult initiatives emphasize separate tours and programs, whilst children’s initiatives are more likely to emphasize an adapted mainstream curriculum. Although, as Cornelia explained, “the goal is choice.” For adults, Cornelia described several long running initiatives that were the result of its Plan, each of which included a range of access strategies. For instance, MFA, Boston started Access to Art unofficially in 2001 and officially in 2002, and it was judged to be so successful it is now sponsored by a major US bank. This visitor centered program serves groups of teens and adults with a wide range of disabilities, whose needs are judged to be best served by multi-sensory interaction with selected pieces at the Museum. Cornelia estimated about 75 percent of the groups for Access to Art come in regularly, mostly monthly, but others are at least bi-monthly or quarterly. Some of the groups [who come along] include Veterans, Assisted Living facilities, memory loss and dementia facilities and support organizations, people with psychological or emotional disabilities, people on the Autism spectrum, people with multiple sclerosis, people with cognitive disabilities, to name some. A further refinement of Access to Art, called Second Saturdays, started in 2013 and was developed for people with memory loss, dementia and their caregivers. This refined program focuses on educational connections between the visitors, tour guides, and artworks as well-being. A stimulation of memory then occurs through a more specialized Access to Art tour followed by social and creative time. As Cornelia explained, “Education would be a by-product of looking, engaging, discussing, sharing ideas.” Alongside its stimulation of memory, this specialized tour also addresses the issue that so many visitors are unsupported at home, or not affiliated with an organization that might bring them to the Museum. Subsequently, in Spring 2016 MFA, Boston expanded this program further by adding a Fourth Saturdays program as an alternative, because the Second Saturdays group was getting too big. MFA, Boston’s A Feeling for Form is a tour that promotes object handling by and verbal imaging for visitors with visual access needs. A Feeling for Form started a little under forty years ago as a touch tour, with limited hours and an approximately yearly program focused on a special exhibition at the Museum. However, in the last fifteen years A Feeling for Form has steadily expanded to include access to all MFA, Boston’s collections and special exhibitions, and people can request the tour during opening hours. Alternatively, the separate initiative, A Hands Reach to Art, which began in the Museum around twenty-five years ago, is what Cornelia calls an umbrella initiative, providing ASL translation during tours and events. A Hands Reach to Art is . . . an Umbrella for everything related to American Sign Language, both tours and programming in American

The Museum of Fine Arts, Boston 187 Sign Language (ASL) only by Deaf guides and presenters, and things interpreted into ASL by ASL interpreters. By contrast, Artful Adventures, a proactively designed program for all children from pre-school through to teens, is based on an inclusive strategy of teaching that follows gallery time with artmaking in MFA, Boston’s Education studios. Geared towards community groups and alternative education of all kinds, Cornelia told me this program has also been going for at least twenty-five years. This initiative had been particularly successful in bringing in new families with disabled children who didn’t want to be separated from their mainstream communities. Artful Adventures was not developed by Access staff, but Access and Artful Adventures partner [with each other]. I, in my role, do a fair amount of training with this group, and also sometimes our Access Guides and the Artful Adventures instructors team up As with the adult initiatives, two further initiatives evolved as an outgrowth of Artful Adventures. The first of these programs, Artful Healing, started in 2014 and goes into hospitals to focus on teaching art to children undergoing intensive medical treatment, who otherwise couldn’t get to MFA, Boston. In this program, art and art activities are shared and offered both bedside and in waiting room areas of local hospitals. The second of these initiatives is a tour called Beyond the Spectrum, which has the same structure as Artful Adventures, but is set up for children on the Autistic Spectrum aged eight to twelve. This program comprises pre-visit stories and information about the tour that smooths the transition into MFA, Boston and reduces the children’s potential stress during their visits. In her notes, Cornelia described how these children’s initiatives weren’t just designed to provide real-time education. In many ways, these initiatives are a bridge program, an opportunity for young people to get to know the Museum and possibly feel comfortable enough to come back with their family, or take an art class or something that makes them feel included. There have been visitors who have done just that, and also still come to this program . . . We also consider Access to Art as a bridge program for many of our groups and visitors. Information MFA, Boston’s approach to providing information for visitors with disabilities is largely proactive and mostly achieved by two methods: 1) the Museum provides information about itself and its educational initiatives, allowing visitors to plan ahead before their visits and contact the Museum to book onto programs or arrange access; 2) the Museum makes its existing

188  Access and inclusion at cultural institutions mainstream information accessible through different formats, encouraging independent visits whilst at the same time supporting educational initiatives. Again, in common with Yosemite and Liberty, MFA, Boston has proactively developed their website to be both an accessible source of mainstream information and provide access information to guide visitors. For instance, in accordance with its Website Accessibility Statement (WAS) MFA, Boston’s pages are designed according to the World Wide Web Consortium’s Web Content Accessibility Guidelines 2.0 Level AA (WCAG 2.0 AA), and Section 5–8 of the Web Accessibility Standards, developed by the United States Access Board. In practice, the design of MFA, Boston’s website allows adaptations to elements of its interface, such as its page colors, its tags added to images to describe their contents, and its text formatting to make contents accessible to screen-reading software. MFA, Boston also proactively solicits feedback from users to highlight any access issues and to evaluate this service. Despite this evolution of the Museum’s website, however, Cornelia recognized its further potential and would like to use it a great deal more. We have a website that has basic access information, but we haven’t used it the way we dream of sometimes! We would love to have the ASL videos on it, for example. Aside from its website, MFA, Boston also proactively relies on other modern technologies to make information on pieces and exhibitions accessible to visitors. For example, for visitors with hearing impairments the Museum has neck loops – which transmit content from the mobile handheld guides directly to the wearer’s hearing aid – captions and scripts in text on video presentations, and an ASL choice – this last option is on the same mobile device. However, this provision has been inconsistent throughout MFA, Boston’s history of access. For instance, despite the development of MFA, Boston’s Plan, Cornelia explained the consistency of video captioning created by MFA, Boston has come and gone over the years. More particularly, videos in galleries and special exhibits have been a sometimes presence for more than sixteen years, although it’s only in the past six years they’ve been consistently captioned. “They were always supposed to be captioned, but there have been periods when it would still fall through the cracks.” The inconsistency of in-gallery captioning was largely alleviated when MFA, Boston switched from an audio guide to a multi-media guide in 2010, and discovered its access features could be used throughout its galleries. As much as possible, the Museum didn’t want to choose for visitors but to have visitors choose themselves so, for example, rather than describing 10 percent of their stops, they decided to have description for all of them. CORNELIA:  There

is a lot of Audio description . . . We started with the new ones being developed for the art of the America’s wing, and then moved

The Museum of Fine Arts, Boston 189 on to playing catch up with the rest of the collection. We have about 600 stops that have audio description now; [but] not all objects are on view all the time. We also always describe the audio tour for the special exhibition, so people can count on that . . . One of the reasons we were able to do so much is we pulled the work in-house and with some outside contractors (like narrators and such). As with Yosemite, MFA, Boston also thinks of ASL as an additional language – such as Spanish or French – as well as an access need, and provides this service for mainstream lectures as well as tours. As Cornelia explained, this is “mostly on request except for during open houses when more is interpreted.” What’s more, gallery technologies, such as fixed screens, are generally captioned, and often have no sound; although as Cornelia pointed out this makes most of this information inaccessible to people who are visually impaired unless they have someone with them. What’s more, MFA, Boston has a mobile, multi-media guide on an iPod touch, which is designed to work for as many people as possible – not just those with defined disabilities. It has American Sign Language as one of the language choices. This means that a group of highlights in the Museum, as indicated by a star, can be accessed in 8 languages, including ASL. There are about 200 stops. The ASL videos are signed by two of our Deaf guides. For ASL we also added some additional stops so that our mini-tours have videos throughout . . . There is text-transcript of the general stops in English. As Cornelia explained, MFA, Boston also keeps maps with large type, and Assistive Listening Devices (ALD) that provide audio description for tours and lectures for visitors with visual access needs. Cornelia and Martha also loan-out tablet computers to support visitors with low vision, to bring music and sound into interactive tours for all kinds of visitors, and sometimes to use as communication devices. Space and place In common with other large museums I visited,3 access to spaces and places at MFA, Boston is designed according to three strategies: 1) access to the Museum from the outside, either making it into the Museum or getting to the site; 2) movement between spaces and places in the Museum, including transport within the Museum and freedom to move in the Museum; 3) comfort in the Museum, including feeling able to be in exhibitions as well as providing adapted services others take for granted. However, and like the Museum’s history of captioning, Cornelia explained this provision has reactively evolved unevenly over the years rather than been designed according to a single policy. For instance, in-off-the-street-access wheelchairs that can be borrowed for mobility between spaces were introduced in 2000, with significantly

190  Access and inclusion at cultural institutions increased numbers in 2010. Similarly, Rollators – walking frames with wheels and a seat to rest on – were introduced into MFA, Boston in 2010. For comfort, some Assistive Listening Devices were in some spaces before 2001, but were only installed throughout MFA, Boston alongside a touring system for the galleries in 2001. Similarly, the Museum’s Beyond the Screen bag was introduced around 1999, but according to Cornelia has evolved further since. [Assistive Listening Devices (ALD)] were added to the auditoriums in 2000 or earlier -2000 may have been an upgrade. The touring system was added in 2001, with one transmitter and two receivers. We have built it over the years and now have something like thirteen transmitters, in three different locations, with many more recievers. When the other auditorium was built as part of the Art of the Americas wing, that of course also got a built in ALD transmitter and receivers with choice of headset or neck loop. Nowadays, physical access has evolved considerably, although parts of this provision still remain unevenly offered. For instance, there are numerous drop off points on Huntington Avenue and The Fenway close to MFA, Boston’s entrances. These entrances to the Museum have ramps left and right of the main stairs to the Museum, and have automatic doors. There’s also a dedicated entrance to MFA, Boston Linde Family Wing on Museum Road, which is designated for scheduled groups and visitors with disabilities. In addition to access parking spaces near its Museum Road entrance, MFA, Boston offers valet parking for cars with designated plates or placards that show the driver or passenger has a disability – MFA, Boston waives the valet fee, but people still pay for parking. What’s more, support workers and care assistants are admitted to the Museum without charge if they are supporting a person with a disability. Consequently, like the National Park Service, the Museum makes sure to offer services to people with disabilities without adding extra costs. MFA, Boston’s Wheelchairs and Rollators are also without charge, although aren’t bookable. The Museum’s website also states its events, such as lectures and special exhibitions, are wheelchair accessible, although not all doors open automatically, which can restrict mobility. For long-wait-comfort, many of MFA, Boston’s galleries have permanent seating, and portable, lightweight seats can be borrowed without charge near the entrance for visitors with disabilities. The stools are sometimes restricted in the special exhibitions, although they aren’t normally allowed in special exhibitions unless permission is given. In addition to providing comfort-stops in its galleries and learning spaces, MFA, Boston also makes its less formal spaces accessible, too. At present, MFA, Boston has accessible toilet stalls in all but two of its restrooms, and two specialist stand-alone accessible restrooms in its visitor center near the

The Museum of Fine Arts, Boston 191 level disability entrance. Similarly, the Museum’s dining areas are designed to be wholly accessible to visitors using wheelchairs.

Summary In common with Liberty in the previous chapter, MFA, Boston has three main issues with its status as a regional institution, which makes it difficult to adapt the Museum for people with disabilities. Firstly, the historical parts of the Museum’s buildings can’t be modified easily, as they’re largely preserved for their beauty and historical importance. Secondly, as many of its artworks are national and cultural icons, they’re preserved for posterity or are too delicate to be exposed for any period. This iconic status makes getting close to these pieces difficult and direct contact with them restricted to only a few highly structured tours and courses. Thirdly, as it is an independent museum it can’t share information with partners easily, and has to raise its own funding to provide access to its buildings and pieces, and implement inclusive strategies. This often means there’s little consistency to its history of access and inclusion, or the implementation of a cohesive policy. However, MFA, Boston has five significant advantages when it comes to both access and inclusion. Firstly, and in common with the national parks in the previous chapters, the Museum and many of its pieces have iconic status in the region. This status often means local people in particular will make an extra effort to visit the Museum even if access can be difficult in places. Secondly, as it has space and is not restricted by either UNESCO or National Park Service status, MFA, Boston has the ability to develop its buildings and introduce accessible features in renovated or new wings. The Museum’s place within such a wealthy, culturally developed city also means it can raise funds for initiatives through special campaigns. Thirdly, as it’s a settled institution with a long and distinguished history, MFA, Boston already has a mature education department that was the home for its access and inclusion strategies – in this respect, Visitor Services and Education still have close ties. This means the Museum’s been able to develop access and inclusion through its learning infrastructure, and develop a mature proactive Plan with an initial point of reference. Fourthly, neither being in the oldest part of the city nor too far from the city center, MFA, Boston’s position makes it relatively easy to access and travel around: it’s surrounded by wide roads; it has open areas around it; and being on a drained fen, it’s on a mobility-friendly flat piece of ground. What’s more, as Fenway is a cultural and academic hub, it’s been served by nearby and reliable overground public transport for many years, most notably the local “T” light railway. Fifthly, its local iconic status and fund-raising infrastructure means it can attract a stream of commercial support for specific access and inclusion

192  Access and inclusion at cultural institutions initiatives – such as its Artful Adventures and Beyond the Spectrum programs. Consequently, MFA, Boston has been creative in developing a proactive approach to access and inclusion, even though this means its approach remains uneven. Subsequently, MFA, Boston’s proactive access and inclusion strategies lean heavily on education, information, and language, where its previous experiences lie. By contrast, the development of spaces and places within the Museum has often come about opportunistically when the Museum is refurbished, or when funds are raised for a new wing. What’s more, as it has no sister institutions as national parks do, it has no single initial frame of reference or guiding principle that covers inclusion throughout the whole Museum – even though there are similar regional museums, all have their own issues of funding, building development, collection development, exhibition area, and so forth, which it can always compare itself with. However, as Cornelia states “With the Access Strategic Plan and MFA 2020 the goal is very much to bake inclusion throughout the fabric of the MFA.” What’s more, it has two further advantages: being part of a wider museums community and being a stable and established institution means that MFA, Boston can plan for the future looking to its mistakes and those of others; and, its history of proactive access and inclusion means the strategies it’s evolved through academic comparison to these other museums can be intrinsic to its plans. So, how does this discussion of MFA, Boston and the previous two cases develop our understanding of access and inclusion in cultural heritage environments? In the next and final chapter, I look back on these three institutions and the human cases in the previous section, to examine issues and highlight possible future directions for access and inclusion.

Notes Huntingdon Avenue is otherwise known as The Avenue of the Arts 1 2 See, for example, Hayhoe (2017). 3 Hayhoe (2017)

Reference Hayhoe, S. (2017). Blind visitor experiences at art museums. New York: Rowman & Littlefield.

12 The original two questions

In this final chapter, I answer the two significant questions I posed in the introduction to this book, which provided a focus for the investigation.

How do people with disabilities develop cultural practices? In this study, all the participants’ cultural practices were heavily influenced by their earliest experiences with families, their closest friends and their community. What’s more, they were influenced less by the physical or psychological impairments that were supposed to disable them and influenced more by the cultural preferences and practices they’d experienced as children. For instance, Ruth (Chapter 7) developed her love of fine art like Tallulah (Chapter 8), as their parents valued fine art when they were younger. Similarly, Pierre’s experiences of literature influenced his later fine art practice (Chapter 7), and Don’s early experience of the war and commerce affected his later travels and his approach to travel (Chapter 8). This demonstrates that bonding was a significant part of developing these participants’ early inclusive capital and subsequent practice in all four cases, no matter what their age or experience of impairment. However, despite a shared experience of bonding there was a significant difference between the cultural experiences participants had, caused by the earliness of their impairments and their passive exclusion. This difference was largely caused by the inclusive capital they developed through the regularity of their education and bonding, and the identities they formed and the cultural transitions they underwent. For example, Tallulah and Don continued to identify themselves as nondisabled and used their cultural practice to stay in touch with their earlier, un-impaired selves, despite their different cultural preferences. In this respect, understanding these participants’ lives illustrates how identities can be formed through language and practice, and by engaging with cultural heritage, body and memory. There were also two significant issues which changed the participants’ experiences whether or not they had impairments early on, which were influenced by the indirect consequences of their impairments.

194  Access and inclusion at cultural institutions The first theme was the way institutions in their early life and the people around them treated the participants as people with disabilities, and the exclusion they faced from regular inclusive capitals. This exclusion was largely driven by whether participants were exposed to particular types of cultural heritage in early life or not, and whether they’d developed capitals before experiencing exclusion. What’s more, this exclusion appeared to lead to a change of identity, defined how the participants felt about themselves and directed the means with which they engaged with cultural heritage. For instance, because the students at Red Leaf School (Chapter 5) were taught in museums from early childhood with family and school, they valued their practice of visiting physical cultural institutions. This experience was shared with Ruth (Chapter 7) and Tallulah (Chapter 8), whose experience of being an active part of a public fine arts community as a child meant they actively sought out fine art later on. The early experiences and visits that stimulated these participants’ practice and valuing of museums contrasted greatly with the earlier experiences of Diego and Phoebe (Chapter 6), who rarely if ever experienced museums. Subsequently, my conversations with Phoebe and Diego showed a longingfor but a lesser interest in real-life museums, and a greater preference for searching art on the web or concentrating on arts practice at school. Similarly, Pierre also showed an early antipathy to fine art (Chapter 7), and a limited enthusiasm for visiting places and spaces with public art collections in older age. Like Diego and Phoebe, Pierre also preferred to practice fine art or the appreciation of literature or music, and when he painted his references were largely from literature or music. The second theme was the need for cultural heritage as a practice of feeling secure when the participants underwent a sudden transition, which became a major cause of stress or dislocation in their lives. Given these sudden changes, the participants’ identities appeared to undergo a schism and displacement, after which they looked to cling to an element of the past they found comforting as a means of providing a sense of belonging. For instance, when Tallulah’s husband died (Chapter 8), she developed a sudden impairment, leaving her with a loss of belonging. Then, when her youngest son left home and her identity as a full-time wife and mother underwent a displacement and left her needing to look for an altered sense of inclusion, Tallulah turned back to her earliest cultural practices. To re-value this early sense of inclusion, Tallulah looked to know fine art and visit museums, a habit she’d developed when she was young and secure with her parents and her eldest brother. Subsequently, she studied the history and philosophy of fine arts, became a member of the Royal Academy and then, on undergoing a further displacement of place, joined numerous cultural societies. This crisis of identity and the need for a sense of belonging was also apparent when participants first recognized their impairments. For example, when Ruth (Chapter 7), Tallulah and Don (Chapter 8) first developed

The original two questions 195 their impairments, none of them identified themselves as a disabled person. What’s more, only Ruth, who recognized her impairment as a teenager and found older role models who were themselves disabled, developed an identity of a disabled person as she came to accept her impairment. Even the younger students at Red Leaf School who were born with an impairment felt a dislocation of their inclusive capital after leaving home to board at school (Chapter 5). However, cultural heritage often helped to alleviate this dislocation, and provided the bonding experiences they were unable to get at home. For example, Sally and Ben, who were resident at the school didn’t just enjoy visits to museums and other cultural institutions as an opportunity to learn and have a day away from schoolwork. Outside school, Sally and Ben found excursions to museums with their families at weekends or during vacations provided an exciting opportunity to bond and feel a sense of inclusion. What’s more, Ben’s memories of visits to the Museum of Childhood, Massachusetts, particularly the visits with his grandma where she treated him with affection, provided solace during times of dislocation from his family.

How do cultural institutions engage people with disabilities? In this study, it appeared the models of good practice in cultural institutions previously followed a largely practical, material model of providing quantifiable support for visitors with disabilities. These services were often based on the existing facilities and departments in the institutions I surveyed, and so there had rarely been a revolution of thinking about the institution as a whole in relation to access and inclusion: Yosemite’s Deaf Service was based in its interpretation service; Boston Museum of Fine Art’s Access service was based in its Education Department – although as my extra note shows, this is to be changed in its comprehensive 2020 plan; and the superintendent in charge of access at the Statue of Liberty was in charge of looking after the building itself. What’s more, these institutional models appeared to evolve organically over a number of years. This more sporadic, sometimes unforeseen evolution meant institutions often provided facilities which turned from reactive into proactive models of inclusion, which were effectively guided by wider access policies. For instance, Yosemite developed its Deaf Service in response to members of its interpretation department noticing a Deaf visitor having a signed tour with a signing-companion (Chapter 9). Realizing this need, Interpretation started by hiring the signer, and an increase in the number of Deaf visitors followed. Since this early period of development, Yosemite’s Deaf Service has evolved to become one of the most important services for people with hearing impairments in the National Park Service – both Deaf and hearing impaired, although its emphasis was on American Sign Language that is traditionally associated with deafness.

196  Access and inclusion at cultural institutions The visit by a couple who were blind and who ventured into the armature and up to the crown of the Statue of Liberty (Chapter 10), also led to a reappraisal of its access strategies. This unforeseen, reactive event stimulated a more proactive investigation into possible future strategies for visitors with similar access needs, and a consultant with her own dog was drafted in to help. This also helped to change the attitudes of the staff at the Statue of Liberty to consider the needs of all visitors with disabilities more widely, lifting the need for inclusion to a new level of consciousness. The Architectural Barriers Act and the American with Disabilities Act have also had a significant impact on the development of institutional policies and practice of the institutions’ access and inclusion in the US. In their cases, Yosemite, the Statue of Liberty and Boston Museum of Fine Arts (Chapter 11) all concentrated on technologies, education, interpretation, information, and spaces and places in reaction to these laws. Consequently, all three institutions were given an imperative to develop coherent strategies to support people with disabilities. As yet, even though there have been significant shifts in attitude to access and inclusion for visitors with disabilities over the past forty years, a significant issue of an over-concentration on material, quantifiable access still remains. For instance, at the time of writing the Architectural Barriers Act led to an over-concentration on physical, material access to the spaces and places of the institution at Yosemite, the Statue of Liberty and Boston Museum of Fine Art. Similarly, the Americans with Disabilities Act led to a ­concentration on policies designed to develop social inclusion for visitors to institutions, whilst not addressing the more deeply rooted issues of cultural exclusion. This issue led to an unevenness of access and inclusion strategies in these three cultural heritage sites. So, what caused this unevenness? It would seem these laws themselves provoked institutional policies that were as much about avoiding litigation as they were about developing deep-seated inclusion. Furthermore, the reactive nature of access led to certain issues being emphasized more than others. Subsequently, although there was good will by those who sought to drive inclusion, customized material access was too often emphasized by institutions’ management in the development of policy plans. Subsequently, the development of a single approach to inclusion which sees material access as the outcome of human emotional need was compromised. This compromise occasionally mistook inclusion for access, and for management to make policies that could be seen as “doing the right thing.” Consequently, little desire was shown by the senior management of cultural institutions, the guardians of cultural heritage, to drive an inclusion agenda and develop their own coherent inclusion narrative. This lack of a coherent narrative has led to the individual reactive situations all these institutions described, and a relatively piecemeal and uneven inclusive evolution over the course of the past forty years.

The original two questions 197 In some situations, this emphasis on material access has also led to what I have previously referred to as symbolic inclusion,1 that is installation of stereotypical symbols of access in order to show that people with disabilities have been considered. In this way, inclusion strategies have been dominated by private resourcing for individual education programs, by visible changes to the structures of buildings during periodic restoration or upgrading or accessible information on websites.

So, what about the future? In studies with such small case numbers of people and institutions, it’s difficult to generalize about all cultural contexts, experiences and practices of access and inclusion. However, the findings in this book point to three issues that need further investigation and consideration in philosophy, law, policy, and strategy development. Firstly, we must ensure children with impairments are introduced to cultural heritage at a very early stage, and where possible institutions should do more to work with families to develop bonding – even in the highly developed models in my three cases, no formal consideration was given to bonding in policies. Bonding with family in cultural institutions will develop inclusive capital, motivate people with disabilities to come back later in life, and also gain a sense of inclusion when people are at greater risk of exclusion. What’s more, cultural institutions need to establish links with people with disabilities who don’t normally attend such places, either because of mobility issues, age, or diminishing confidence. Sites must also do more to reach out to children with disabilities from communities that aren’t traditionally engaged in exploring sites of cultural heritage, who consequently have little incentive to engage with cultural institutions. Secondly, cultural institutions need to do more to recognize the many different identities of people with disabilities – many of whom may not think of themselves as people with disabilities at all. Current inclusion and access policies are often premised on social models of disability, which too often see people with disabilities as a homogenous community, with similar needs and similar outlooks. As I have shown in the cases in the second section of this book, people’s cultural practice is often guided by their upbringing more than their impairment or perceived disability. What’s more, in all the cases no two people with disabilities had the same physical need, even if they were considered to have the same impairment. Subsequently, their needs when visiting cultural heritages sites were largely driven by their highly diverse backgrounds. Thirdly and most importantly, although cultural institutions are beginning to put inclusion at the heart of their remit, they need to realize they’re drivers of inclusion rather than the people who have to be included. It’s only when more institutions develop their own philosophy, and see inclusion to

198  Access and inclusion at cultural institutions cultural heritage as much a part of their responsibility as its preservation is, will cultural heritage be open to everyone.

Note 1 Hayhoe (2008)

Reference Hayhoe, S. (2008). Arts, culture and blindness: Studies of blind students in the visual arts. Youngstown, NY: Cambria Press.

Index

Alexander, J.C. 66 Americans with Disability Act (ADA) 119, 150, 156, 166, 178 art education 38, 92, 179, 181 ASL (American Sign Language) 159 – 161, 165, 183, 186 – 187, 189, 195 asylum 13, 20 – 26, 29, 41, 71 Asylum for the Support and Education of Indigent Deaf and Dumb Children of the Poor (London) 21, 29, 30 Austria 44 Barnes, Colin 29 Bath (UK) 131 Birmingham (UK) 38, 110 – 111, 114 Blacklock, Thomas 19 – 20 bonding 2, 59 – 60, 73, 80, 84, 89, 92, 96, 102, 107 – 109, 111, 113, 115 – 118, 125, 131, 134, 143, 145 – 146, 150 – 151, 158, 169 – 170, 172, 184, 193, 195, 197 Boston (US) 64, 74, 76, 117, 147, 149, 178 – 192, 195 – 196 Bourdieu, Pierre 9 – 10, 53 – 56, 58, 62, 65 Bristol (UK) 44, 130 – 131, 134 Bristol Asylum (for the blind)/Bristol School of Industry for the Blind 20 – 21 British Educational Research Association (BERA) 6 bus 61 – 62, 73, 88, 149, 159 California (UK) 1, 11, 62, 87 – 90 California School for the Blind 11, 84, 86 – 100 capital 89, 91, 93, 95, 97, 99, 101 – 102, 104 – 105, 109 – 110, 112 – 113, 115,

117 – 118, 120 – 121, 124 – 126, 133, 140, 149, 151, 158, 164 – 165, 169, 172, 174, 176 – 178, 184 – 185, 193 – 194, 196 – 197 castle 12 cathedral 12, 22 Chan, J. Y. 47 Chaney, D. 66 Children’s Museum, Mashpee (Mass., US) 74, 76 Christian (protestant) 142 Church 12, 59 – 61, 145 – 146, 137 – 138 Cole, M. 47 continuing education 38 Corbin, J. 12 Craze, M. 29 cultural capital 53 – 56, 62, 118 Deaf Service, Yosemite National Park 158 – 162, 165, 195 dehumanization 17 de l’Epee, C.M. 19, 29 Demodocus 19, 29 Dennis, T. A. 47 Diderot, Denis 18 – 20, 29 disability: in adulthood/old age 39, 43 – 45, 57, 126; early onset 44; medical model of 5; social model of 42 – 43, 50, 197 Dodds, J. 12 Edinburgh 20 Edinburgh Asylum for the Blind 20 Eldritch-Boersen, S. 66 Engels, F. 26, 30 epistemological model of disability 5, 17 Equalities Act (UK) 150 ethics: disability 21; research 10, 65

200 Index evolution 6, 54 – 55, 181 – 182, 188, 195 exclusion: active 3, 26, 29, 40, 103; passive 4, 29, 32 – 41, 57, 81, 91, 95, 100, 104 – 106, 114, 193 farm 108, 110 Fletcher, R.C. 29 Foucault, M. 29 Fowler, B. 66 Freemont (US) 88 Freire, P. 17, 29 Glaser, B.G. 12 Goffman, E. 71, 84 Gombrich, E.H. 62, 66 Gregory, R.L. 127 – 128, 147 grounded methodology 5 – 6 grounded theory 5 – 6, 106 guide dog 35, 106, 171 Hauy, Valentin 20, 29 Hayhoe, S. 1, 9, 12, 29 – 30, 47, 66, 84, 102, 126, 147, 192, 198 hearing impairment 8 – 9, 20, 36 – 44, 188, 195 Hehir, T. 12 Howe, Samuel Gridley 22 – 27, 29, 53 Hull, John M. 38, 42, 47 human value 11, 49, 50, 56, 58, 64 – 65 Hunter, R. 29 Huntingdon Avenue/The Avenue of the Arts 192 idiots 23 inclusive capital 1, 10 – 11, 44, 47, 49, 56 – 61, 66, 71, 73, 82, 89, 91, 93, 95, 97, 99, 101 – 102, 104 – 105, 109, 112 – 113, 115, 117, 120 – 121, 124 – 126, 133, 140, 149 – 151, 158, 164 – 165, 169, 172, 174, 176 – 178, 184, 193 – 195, 197 information 79, 93, 99, 121, 151, 161, 187 Israel 117 – 118, 120, 123, 144 Jacobs, J. 165 Kelland, L. 66 Lamont, M. 66 learning 49, 67 learning difficulty 35, 48 Leicester 38, 44, 105

Liberty Island, National Park 149, 168, 172 – 176 Liverpool Asylum (for the blind) 20 Lizardo, O. 66 London (UK) 21, 134 – 135, 137, 143, 149, 173, 182 Lowenfeld, Berthold 44, 47 Macleod, M. A. 47 Mann, Herman 25 – 26 Marx, Karl 9, 50 – 54, 58, 62, 64 – 66, 102 Massachusetts (US) 1, 11, 22 – 24, 26 – 27, 72 – 73, 147, 179 – 180, 195 McGiffert, M. 29 mental health 18, 20 Merleau-Ponty, M. 128, 147 Mills, C.W. 41 – 42, 46 – 47 mobility 54, 56, 59 – 60, 71 – 72, 127, 135, 150 – 197 modern 17 – 18, 26, 45, 55, 58, 62 – 64, 71, 88, 111, 114, 134, 149, 182, 188 monument 1, 9, 12, 59, 127, 136, 149 – 150, 154 – 155, 163, 167, 169 – 170, 173, 175, 177 moral/morals/morality 18 – 29, 32, 42, 46, 49, 50, 52 – 53, 58, 65, 87 mosque 59, 12 museum 179 – 192 Nagel, T. 30 National Park Service (US) 150, 154 – 165, 168 – 169, 171 – 172, 178, 184 – 185, 190 – 191, 195 New Jersey (US) 11, 115 – 116, 118, 123, 125 – 126, 174 New York (city, US) 11, 64, 75, 104 – 106, 115, 121, 125, 147, 149, 165, 167, 173 – 175, 179 Nottingham (UK) 108, 111 – 112, 114 Oliver, Michael 29 Padden, C.A. 29 palace 12 Pfeiffer, D. 3, 12 Phrenological Society (Boston) 24 phrenology 22, 23 physical trait 12, 35, 49 pilgrim 60, 61 play 33, 61 – 62, 64, 72, 75 – 76, 86, 88, 90, 109 – 110 Popper, K. 12 Preece, A. 165

Index  201 Rehabilitation Act (US) 155 – 156, 159, 162 retreat (for people with issues of mental health) 20, 22 Reynolds, C. 178 Riddell, S. 66 Roger, K. 66 Rogers, A.C. 30 Russia 141, 167 Sacks, Oliver 127 – 128, 147 Sandell, R. 12 Sanderson, Nicholas 19 San Francisco (US) 86, 88, 90, 92, 95 – 96, 100, 149, 153 School for the Blind 11, 24, 86 – 102 School for the Deaf 19, 174 Schwab, J. 29 signing/sign language 19 – 20, 39, 44, 46, 122, 158 – 159, 161, 172, 174, 183, 186, 187, 189, 195 Singh, I. 47 Smith, Adam 9, 29, 50 – 52, 62, 64, 66 Snyder, W.M. 165 social exclusion 33, 40, 54, 57, 65 South coast (of England) 129 Sroufe, L.A. 84 Strauss, A.L. 12 Sussex 137 – 140 Swartz, D.L. 66 synagogue 12, 59

technical capital 55 – 56 Temperance Society (Boston) 23 – 24 temple 12, 59, 142 train 62, 139, 171, 179 UK Government/HM Government 40, 47 US Department of Justice 165 US Department of Labor 165 US Department of the Interior 160, 165 US Government 153 visual impairment 4, 8 – 9, 20, 22, 39 – 40, 44, 86 – 87, 94, 161, 185 Vygotsky, L.S. 40 – 41, 47 Wales 107, 110 – 111, 113, 129 – 130 Watson, N. 66 Weber, M. 29 Wenger, E.C. 165 West of England 128, 137 Weygand, Z. 29 Wiltshire (UK) 60, 137 Worcester (UK) 21 – 22 Worcester College for the Blind Sons of Gentlemen 21 World Health Organisation (WHO) 33 Yardi, S. 9, 10, 55 – 56, 58 – 59, 65 – 66 Yosemite (US) 153 – 165