Hearing Impairment and Hearing Disability: Towards a Paradigm Change in Hearing Services 1472453204, 9781472453204

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HEARING IMPAIRMENT AND HEARING DISABILITY

Except in rare instances, chronic hearing health conditions are almost always considered primarily from a medical, curative perspective. In their book, Hogan and Phillips challenge their readers to go beyond this traditional approach. Hearing disability is considered from a substantially broader perspective that encompasses social psychology, sociology and public health. The goal of their treatise is to bring the key stakeholders to recognize the important social manifestations and consequences of hearing loss and to adopt and provide intervention services that cater directly to these needs. Jean-Pierre Gagné, Université de Montréal, Canada

Copyright Permissions Joan Miró Landscape (The Hare) (Paysage [Le Lièvrel]), autumn 1927 Oil on Canvas 51x76 5/8 inches (129.6 x 194.6 cm) Solomon R. Guggenheim Museum, New York 57.1459. Parts of Chapter 1 originally appeared in Disability & Society (1997), vol. 12, no. 5, pp. 793–805 under the title of ‘Issues impacting on the governance of deafened adults’. It is reproduced with the permission of the publisher. Parts of Chapter 2 were originally published by the American Speech-Language-Hearing Association in its Perspectives on Aural Rehabilitation and Its Instrumentation, (2011) 18, pp. 13–22 under the title ‘Towards a social psychology of living with acquired hearing loss’. It is reproduced with permission. Parts of Chapter 5 originally appeared in the book Hearing Rehabilitation for Deafened Adults (Hogan 2001; Whurr Publications, London). The copyright over this text was reassigned to Anthony Hogan following the decision of Wiley Publishers to no longer publish in audiology.

This book is dedicated to the life and memory of the Rev. Associate Professor Christopher Newell PhD. Christopher was one of the founders of the Disability Movement in Australia. A disabled person himself, he knew first-hand the many struggles and challenges which this book seeks to address. He personally took on the challenges of medical dominance, the governance of disabled people and the inaccessibility of the social and built environments. Christopher’s doctoral studies addressed the social impacts of cochlear implants. Moreover, he was a great friend. We are the better for having known Chris and the worse that he is now gone!

Reverend Associate Professor Christopher Newell PhD AM FACE 1964–2008

Source: Photograph kindly supplied by and used with permission of Telstra Corporation Ltd

Hearing Impairment and Hearing Disability

Towards a Paradigm Change in Hearing Services

ANTHONY HOGaN aND REBECCa PHILLIpS both at the University of Canberra, Australia

First published 2015 by Ashgate Publishing Published 2016 by Routledge 2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN 711 Third Avenue, New York, NY 10017, USA Routledge is an imprint of the Taylor & Francis Group, an informa business Copyright © Anthony Hogan and Rebecca Phillips 2015 Anthony Hogan and Rebecca Phillips have asserted their right under the Copyright, Designs and Patents Act, 1988, to be identified as the editors of this work. 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. 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. The Library of Congress has cataloged the printed edition as follows: Hogan, Anthony. Hearing impairment and hearing disability : towards a paradigm change in hearing services / by Anthony Hogan and Rebecca Phillips. pages cm. – (Interdisciplinary disability studies) Includes bibliographical references and index. ISBN 978-1-4724-5320-4 (hardback) 1. Hearing impaired–Social conditions. 2. Hearing impaired–Services for. 3. Deaf–Social conditions. 4. Deaf–Services for. 5. Sociology of disability. I. Title. HV2380.H626 2015 362.4’2–dc23 ISBN 9781472453204 (hbk) ISBN 9781315586410 (ebk)

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Contents List of Figures and Tables vii List of Contributors ix Forewordxi Prefacexv Acknowledgementsxix List of Abbreviations xxi Introduction Anthony Hogan and Rebecca Phillips

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1

Hearing as a Social Issue Anthony Hogan and Rebecca Phillips

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2

Stigma and its Consequences for Social Identity Anthony Hogan, Katherine J. Reynolds, Isabel Latz and Léan O’Brien

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3

The Emergence of the Social Perspective in Hearing Services Anthony Hogan

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The Need for Paradigm Change Anthony Hogan and Isabel Latz

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5

Engaging in Change at a Personal Level – the Importance of Learning to be Affected Anthony Hogan

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Societal Change: Towards a More Comprehensive Re-structuring of Hearing Services Anthony Hogan

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References121 Appendix135 Index139 Series Information 145

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List of Figures and Tables Figures 1.1

Self-reported level of communication difficulty

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1.2

Impact of hearing devices on ability to hear

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4.1 4.2

The traditional model of governing hearing impairment Governing hearing within a citizenship model

70 79

5.1 5.2

The interface of hearing identity and the experience of difference Cluster groupings of people with hearing impairment by Montreal criteria of reduced social participation, reluctance and stigma

86 96

Tables

1.1 1.2 2.1 2.2 5.1 5.2

Estimates of hearing impairment amongst Australians aged over 15 years Estimates of hearing impairment amongst Indigenous Australians aged over 15 years Methods of studies investigating hearing impairment and mental health  Psychological factors and negative emotions due to hearing impairment based on findings from the literature review Cluster segments by degree of hearing impairment  Cluster groupings of people with hearing impairment by Montreal criteria of reduced social participation, reluctance and stigma

23 23 40 43 97 97

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List of Contributors

Anthony Hogan PhD Anthony is Professor of Regional Governance at the Institute for Governance and Policy Analysis, University of Canberra. He is also Adjunct Professor in the Research School of Psychology, The Australian National University, Canberra. He has 25 years’ experience investigating social aspects of living with hearing impairment and has led the international development of work in this field. This work has resulted in Anthony publishing several textbooks and many research articles on these issues. His work is particularly concerned with the reorientation of hearing services away from medically oriented input models to models centred on citizenship rights and social outcomes. Isabel Latz BSc MPhil Isabel is a social epidemiologist and works as a policy analyst at the Institute for Health and Social Policy at McGill University. She has contributed to research projects at the National Centre of Epidemiology and Population Health at the Australian National University and most recently, within the Research Unit for Schizophrenia Epidemiology at the University of New South Wales. Her research interests are concerned with the social determinants of health, global health inequities and the epidemiology of mental disorders. Léan O’Brien PhD Léan is a Fellow at the School of Psychological Sciences at the University of Melbourne. Her research interest are identity, social participation and wellbeing. Rebecca Phillips PhD Rebecca is a research consultant and a Visiting Fellow at the Institute for Governance and Policy Analysis, University of Canberra. She has a background in occupational therapy and has a strong interest in researching the wellbeing of people with health conditions and effective service delivery. Recently Rebecca has been involved in research looking at the social inclusion and psychosocial health of children with hearing impairment, as well as the evaluation of a program to improve the psychosocial outcomes of farmers with hearing impairment. Katherine Reynolds PhD Kate is an Associate Professor in the Department of Psychology, The Australian National University, Canberra. In her research she investigates the role of the social self or social identity (sense of self as a

HEARING IMPAIRMENT AND HEARING DISABIlITY

group member – “we”, “us”) in shaping people’s attitudes, affect and behaviour. The research is of interest to a range of policy makers in areas of social and behavioural change including educational leadership and school improvement, social norm change in dysfunctional communities, and building social cohesion in the face of ethnic and religious diversity.

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Foreword Not being able to hear well means not being able to communicate or participate in activities of choice. There is an important opportunity for services to be more effectively delivered to enable consumers to more effectively and positively contribute to the economy, for the benefit of all, through their work, study and community activities. A re-ablement focused approach to services that supports people through contemplation and action, in an evidenced based framework, will provide better use of resources and better hearing outcomes for all. The Australian Government’s National Disability Agreement (NDA)1 expressly states Australia’s commitment to the wellbeing of people with disability. Central to fulfilling this commitment the Australian community has undertaken to ensure that people with disability are able to take their rightful place in our society, be that place at school, paid employment or participating in the broader life of the community. In order to fulfill this commitment the Council of Australian Governments (COAG)2 has developed a performance framework which is designed to provide the evidence necessary to monitor the extent to which people with disabilities get a fairer go in Australia. A fairer go for Australians with disability will manifest itself in better employment and earning opportunities for all, as well as, people with disability being able to identify the kinds of services they need to equitably participate and having control over these services. Models of service delivery will be client centred, flexible and diverse in nature, such that the unique needs of individuals and their families can be addressed, irrespective of where they live in Australia. Better Hearing Australia (National) is a national consumer-based organization that is committed to progressing the social and economic participation of Australians who have a hearing-related condition. As evidenced in our joint publication with the University of Canberra (Hogan et al. 2014) we are concerned that members of our constituency are not able to take their proper place in either the economy or society and to this end we seek a fairer hearing for all with hearing-related conditions.

1 https://www.dss.gov.au/our-responsibilities/disability-and-carers/programservices/government-international/national-disability-agreement accessed 18 December, 2014. 2 https://ndoch.govspace.gov.au/resources/national-disability-agreement accessed 18 December, 2014.

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On a daily basis, across Australia, people present at BHA for support and rehabilitation. Our model is underpinned by the principles that support people through change and acceptance (Prochaska et al. 1984). This is as opposed to other service models that are restrictive by being device-centric approaches that do not work with individuals. In particular an individual’s need of contemplation and support before action. Such device-centric approaches ultimately lead to higher rates of device abandonment, which is costly for society. These approaches are emotionally taxing for a person who believes that nothing can be done for their hearing issues and is therefore at high risk of isolation and depression. Investing in individuals, and supporting them through the experience of loss and change in life circumstances to meet their individual needs through broader service models is good for all Australians, both socially and economically. Across the western world, little attention has been given to the kinds of services that deaf and hearing impaired people require. Australia’s models of service delivery were designed immediately after World War II and little has changed since these times. For better or for worse, a device-centric model has emerged as the dominant paradigm in hearing services. While we all love our technology we remain very aware of the fact that alone, a little piece of electronics, cannot change the social relations of disability. As the NDA makes evident, change is required across a variety of areas in service delivery, with the most important element being a shift from the provision of inputs (e.g. devices) to a focus on outcomes such as whether a device make a difference in enabling individuals to finish school, get a job, and contribute to country and community. To this end BHA (National) has endorsed a call for change. It is time that consumers of services and their advocates have a direct say over the design, funding and delivery of hearing services. This book – Hearing Impairment and Hearing Disability – Towards Paradigm Change in Hearing Services represents a watershed in the development of a new era in hearing services. First and foremost, it documents the institutional developments that have led to the construction of current services and social policy and identifies the pathways that have made many Australians dependent upon a less than ideal model of service delivery. Moreover, the book provides the kind of evidence base called for in the NDA and provides a benchmark against which progress in hearing services can be monitored. It reports in detail the confronting reality that at present our members do not enjoy equality of employment and life opportunities in Australia and that indeed our issues require a fairer hearing. It underscores the fact that those Australians who are deaf and hearing impaired and who are at a time in their life when they are most able to contribute to our economy (those of prime working age), are the only group excluded from access to publicly funded hearing services. xii

FOREWORD

The book introduces evidence from across the world that demonstrates the need for paradigm change in hearing services while giving due attention to the efficacy of the proposed service changes. Importantly it calls for changes in the kinds of people who are entitled to provide hearing services and calls for a diversification of the training of existing hearing and speech professionals. The book also makes it very evident that hearing services are not controlled or driven by deaf or hearing impaired people. Finally this book details a series of strategies for the advancement of disability policy in Australia, particularly with regards to hearing services. It also brings forth the need for corporate interests to rethink their understanding of corporate social responsibility in the 21st century. Sara Duncan National President Better Hearing Australia (National) Melbourne, July 2015 References

Prochaska, J.O. and DiClemente, C.C. The Transtheoretical Approach: Crossing Traditional Boundaries of Therapy. Homewood, IL: Dow Jones-Irwin; 1984. Hogan, A., Phillips, R., Barry, M. and Duncan, S. 2014, A Fairer Hearing: Enhancing the Social Inclusion of People with Hearing Loss. University of Canberra Institute for Governance and Policy Analysis and Better Hearing Australia (National), Canberra.

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Preface

My work in this social space grew out of what Saskia Sassen (2007) refers to as a sociological irritation. Years ago I was conducting a community consultation on hearing issues with people in a small country town on the north coast of New South Wales, Australia. At the time (1989) I was employed as the Manager of Community Services with the New South Wales Deaf Society. Technologies such as cochlear implants were just being developed and digital hearing aids were yet to hit the market. Community-based, social models of hearing services, although established in some parts of the world, were barely established in Australia and to date are still quite thin on the ground. The consultation was held on a Saturday afternoon, in a drafty room, at the back of an ex-servicemen’s club. At this meeting I was confronted by the stark reality of what it was like for people, not simply to lose much of their hearing, but with the realities of what it was like to live life in a hearing world when you had a hearing disability. By analogy it was as though women would today be expected to continue to live life by men’s rules. It was only years later, after having conducted substantial research, that I developed the necessary empirical insights that allowed me to more readily articulate what has underpinned my sociological irritation. It was evident to me from the start that people with hearing disability did not simply lack access to technology which adequately addressed their communication problems (for example, being able to hear in dark and noisy settings). They also lacked access to a conceptual framework for understanding and legitimating one’s self in a changing world; one which addressed the inaccessibility of many social settings and which in turn influenced how support networks operated. Only a handful of people turned up to the consultation, yet what they had to say changed my life forever. They were basically older people whose hearing had changed over time. They had sought out every form of help they could find, and spent all they had on expensive hearing aids, but to no avail. They had been left to fare as best they could in the world without adequate assistance or support. Illegitimated hearing disability had devastated their lives and left them on the margins of society as impoverished, isolated and broken people. I simply could not understand how these things had come to pass. Why did our society treat people like this? Why was there no adequate form of help available for them? How could it be that government perpetually funded a service delivery model where 40 per cent of people who receive the service are dissatisfied with

HEARING IMpAIRMENT AND HEARING DISABILITY

it and where 20–30 per cent of those who receive the service, reject what is provided to them? Why should hearing disability result in such marginalisation of people? How can it be that the service delivery model is focused on the inputs that service providers feel comfortable to provide and not be focused on the outcomes people need in order to be able to participate equitably in our society? What particularly irritated me was that I knew that this way not the way things had to be. As far as I was concerned, things needed to change. I knew many people with hearing disability who were living out meaningful, inclusive and empowered lives. But what I was to learn over time was that these people were in fact exceptions to the rule. They had somehow accessed sufficient support and resources to change the way they saw themselves in society and were able to carve out a reasonable life for themselves (Hogan 1998). And while these people had more advanced experiences of hearing disability than most, I soon learnt that people with less intense experiences of disability also encountered a wide variety of social problems, many of which were centred on several key issues. The rules of everyday communication are such that a person with hearing disability has to live in society as though they hear within a stereotypic taken-for-granted fashion. There is really no social accommodation for people with hearing disability. While there are well known and accepted sets of rules for how we include people with hearing disability in conversations (face people, speak slowly and clearly, turn down noise or turn up lights), they are mostly followed in the breach. People avoid asking for communicative accommodations for two reasons; first (as noted) to avoid marginalisation and second because most people, even if they agree to accommodate one’s needs, soon forget what they are supposed to do and revert to communicating in hearing ways. The critical research question though was why was this the case? Why would people with hearing disability put up with services which do not work very well for them and also tolerate people who will not support them? What was the critical barrier here? Since that initial community consultation occurred much has changed technologically while little has changed in terms of marginalisation. Cochlear implants and hearing aids have come into their own as technologies that provide useful auditory input for many people with hearing impairment. Yet despite the media attention surrounding this technology, most people with hearing disability will tell you that they still face very real challenges managing difficult communication settings in everyday life, particularly where background noise is present. As I write this preface I reflect on the experiences of a talented young man at a social function last Saturday night. While the young man had two cochlear implants, the noise was such that he could not communicate in the social context of a noisy restaurant. He caught my attention as he played games on his mobile telephone while everyone talked around him. Shortly after he and his partner went outside to talk in the car park, relegated as they were xvi

PREFACE

to the smokers’ corner of the event. So it is important that I restate that while technologically things have improved, socially much has stayed the same. Certainly it would be good if the world sat up and started to treat people with hearing disability with the respect and consideration due to them. But this is not going to occur without a generational process of social change where the social position of people living with hearing disability rapidly shifts and where their social participation needs are addressed within a framework centred on citizenship; a framework which goes well beyond current notions of social inclusion. The community consultative process noted earlier identified three priority issues for people with hearing disability – social legitimation, equitable social participation, and access to meaningful, equally paid employment – values and outcomes which are reinforced today within the National Disability Agreement. The detail provided in this book sets out to address these needs. This book is intended to be used by people who are concerned about the social wellbeing of people with hearing disability, be they people with hearing disability themselves, policymakers, students, academics or clinicians of some kind. It is concerned with consolidating work on a new conceptual framework for hearing services that has been in development for over 50 years. This framework enables people to make sense of the experiences of living as members of a large minority group which is systematically marginalised by taken-for-granted assumptions about communication; assumptions that have been underpinned and legitimated by material interests and ablest attitudes. It provides readers with a method for understanding and explaining how the structuring of the social relations has come about and the impacts it has on the economic, physical and psychological wellbeing of people with hearing disability. It is intended to provide people with a language to open up a discourse and movement for social change; a process of change which should radically impact on the structuring of social communication at the societal level along with the re-design of the basis for the provision of services for people with hearing disability in the future. There is a dearth of material available in this field so I hope that this text will begin to fill some of this knowledge gap while stimulating others to go on to do future research in this field, such that the world for people whose hearing changes may become fairer. This book is a significant development on my first book, which was published almost 15 years ago (Hogan 2001). At that time I was working closely with clinicians employed in cochlear implant programs. The book was one which clinicians needed at the time so that they could begin to shape and inform social approaches to implant services. The work was quite successful in that clinicians such as Claire Sheridan (Britain), Ellen Giles (New Zealand), Susan Binzer and Gitry Heydebrand (USA) and Karen Pedley (Australia) were able to lead teams to develop psychosocial approaches to hearing impairment. xvii

HEARING IMpAIRMENT AND HEARING DISABILITY

This book continues my earlier work which has been to inform social awareness and practice about issues impacting on people, particularly those with acquired hearing impairment, who wish to, or need to, undergo the odyssey of integrating experiences of difference within their social identity. This is the text I have wanted to write for quite some time now. Unlike my first book, this one is not constrained to being simply a resource for clinicians who work in a given space. A clear intent of this text is to challenge existing constructions of living with hearing disability and the service models which presently exist to address the needs of these people. Such models of service provision have not undergone a serious review since they were established immediately after World War II. Yet again, so much has changed since then while so little has changed. This is the problem that I seek to address. I am particularly grateful to Dr Rebecca Phillips for her continuing contributions to this project over the past three years as well as to the other researchers who have also contributed their efforts to making this book a success. Professor Anthony Hogan

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Acknowledgements We take the opportunity to thank the Series Editor, Associate Professor Mark Sherry, for his incredibly helpful suggestions to bring out the best that this book could offer to the field. We would also like to thank our colleagues at the University of Canberra, particularly, Paul Porteous (for equally helpful suggestions on structuring the contents of the book to make them more readily accessible to policy makers) and to Shaun Allen (for his proofing of the final text). We would also like to thank our respective partners for their continued encouragement, support love, patience and understanding in this mad existence we call academia. Anthony Hogan and Rebecca Phillips, July 2015.

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List of Abbreviations

AIADH ATDPA

The Amsterdam Inventory for Auditory Disability and Handicap Assistive Technology Device Predisposition Assessment

COAG CPHI CSS

Council of Australian Governments Communication Profile for the Hearing Impaired Communication Strategies Scale

HDHS HHIA HILDA HRQoL

Hearing Disabilities and Handicap Scale Hearing Handicap Inventory for Adults Household Income Labour Dynamics Australia survey Health-related quality of life

ICIDH

International Classification of Impairment, Disability and Handicap

NDIS NDA NDRDA

National Disability Insurance Scheme National Disability Agreement National Disability Research and Development Agenda

PGWB PHAP

Psychological General Well-being Scale Profile of Hearing Aid Performance

SDAC SF-36

Survey of Disability, Ageing and Carers Short Form 36

WHO

World Health Organization

Joan Miró Landscape (The Hare) (Paysage [Le Lièvrel]), autumn 1927 Oil on Canvas 51x76 5/8 inches (129.6 x 194.6 cm) Solomon R. Guggenheim Museum, New York 57.1459.

Introduction Anthony Hogan and Rebecca Phillips Government statistics, independent research projects and personal experience show that on nearly every indicator of participation in mainstream life disabled people come out extremely badly … . To deny the personal experience of disability is, in the end, to collude in our oppression (Finkelstein 1993, p. 11 and 19). Background

The ability to participate in community life at a level commensurate with others has been the comparative benchmark for quality of life across millennia. One of the key underlining principles of the United Nations Convention on the Rights of Persons with Disabilities1 is that people with disabilities enjoy full and effective participation and inclusion in society (Article 3). As we look into the future of disability policy and services it is necessary to ask whether people with hearing disability are prevented from enjoying full and effective participation and inclusion in society? If the answer to this question is in the affirmative, it is then necessary to determine the nature of such disadvantage and to identify the remedies needed to address the processes of disadvantage identified. In preparing this book it is our view that hearing disability is in fact ‘a big deal’ and that people with hearing impairment face significant, but not yet readily acknowledged barriers to full and effective participation in society. Twenty years ago David Wilson et al. (1992) described hearing impairment as an under-estimated public health problem. In this book we address impairment through a sociological lens and give consideration to the extent to which, and to what consequence, the social impacts of impairment have on the social position of people with hearing disability. In considering this social position, we in turn give particular consideration to the adequacy of services which are designed to enhance the social position of this cohort. In this book we want to present to you, the reader, our evidence as to why we think this cohort deserves a fairer hearing from policy makers, service providers and wider society. But before we progress to considering the current situation we wish to revisit the question as to how and on what basis, hearing disability emerged as an issue which would become the focus of governmental processes. To answer this question one has to push back the boundaries of the taken-forgranted and re-examine the social assumptions that underpin the governance of 1 http://www.un.org/disabilities/convention/conventionfull.shtml

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disability today. This has to be done through a lens which seeks to understand a particular social system from the perspective of the purpose it was designed to serve, with regards to the functioning of broader society (Luhmann 1995). Bourdieu (1977) was particularly concerned with the shaping of the habitus. In the broadest terms, habitus refers to ‘our overall orientation to, or way of being in the world; our predisposed way of thinking, acting and moving in and through the social environment that encompasses posture, demeanour, outlook, expectations, and tastes’ (Sweetman 2003, p. 532 cited in Akram 2010, p. 10–11). Akram (2010, p. 10–11) notes that people are born into and socialised within the habitus and their lives are shaped by it. It is for this reason that in Chapter 1 we give particular attention to the factors that have served to shape the habitus. Chapter 1 takes up this challenge, building as it does on early work Anthony undertook in this field (Hogan 1997). It documents the development of the ontological framework which underpins deafness and in turn, hearing disability. A key point that we wish to make here is that more refined notions of what is a disability, and a differentiation between kinds of disability, emerged in late modernity, particularly in relation to urbanisation and advanced westernised economies. Moreover, these techniques of differentiation emerged as part of a process which was concerned with categorising the body with regards to one’s capacity to work or to interact with others. Historically there was a clear differentiation between being deaf or hearing, but notions of being hard of hearing really only emerged, in a governmental and a clinical sense, in the 19th century. Importantly, the genealogy of hearing disability had its origins in a broader social construction of disability, which has changed and which will continue to change, over time. What is important to understand, through the lens of historical sociology (Dean 1994), is the moral and social context which framed the way in which people with hearing disability have been constructed in our society and the implications such constructions have both for these people in themselves as well as broader society. To this end Chapter 1 builds upon existing histories of culturally Deaf people but also extends this work by linking it with other major social processes that have occurred since the Reformation. It focuses in turn on how these values came to also be associated, at least in part, with hearing disability. From Deafness to Hearing Impairment

Just to be clear and up front, this is not a book about people who live in the Deaf Community, who use sign language and who enjoy a unique social identity and culture. The primary focus of the book is about the experiences of people whose hearing changes during the life course. Most people who acquire hearing disability are not interested in Deaf Culture and sign language because their culture is inherently ‘hearing’, but hearing with a difference. Moreover, sign language 2

INTRODUCTiON

is not relevant to their needs when access to communication may require little more than reducing background noise or removing glare, and perhaps a modest amount of amplification from an assistive listening device. At the same time much can be learnt from the Deaf Community about how they have focused on the integration of identity, difference and culture. Indeed, as we will argue within this text, identity and culture are central to wellbeing and social position. Similarly, the battle that has been led by the Deaf Community has been centred on their refusal to be subjugated to a form of governance which sought to extinguish much of their identity and citizenship, refusing to allow them to participate in mainstream society unless they remade themselves as some kind of pseudo-hearing person (Lane 1993).2 This text argues that it is in the journey into embracing some level of social identity (and one which is embraced by their family, friends and employers), that people with hearing disability are able to fully assert their rights as equal citizens and come to enjoy a more positive social position and quality of life. The Issue of Language

Central to the need for a paradigm change in hearing services is the need for a change in the language which is used to describe members of the cohort that we are writing with and about. For the sake of consistency, clarity and understanding, we have decided to stay with two basic phrases – people who have a hearing impairment (that is an audiologically measurable loss of hearing) and people with hearing disability (the social or interactional consequences or impacts of having a hearing impairment, often exacerbated by social settings which privilege phono-centricism). The language used to describe people is very important as it shapes identity and social position, especially in the presence of stigmatising social processes. While the current convention in some circles is to distinguish between impairment (functional limitations) and disability (the socially caused consequences of impairment) (see Goodley 2011 for a fuller discussion of these issues), we find ourselves inherently uncomfortable with such language because it skates over the social origins of impairment (Abberley 1987). For the majority of people who experience a hearing disability, communication can readily be accessed when people speak in well-lit settings, one at a time, and where background noise is controlled. As such, an argument for the social origins of barriers to communicative participation can be readily mounted around the social relations of hearing and that they need to be fairer. 2  We also wish to acknowledge the work of Lennard Davis (1995) at this point in the book. While Davis’ work focused more on the Deaf Community, his insights around the issue of ableism are present throughout this text. 3

HEARiNG IMPAiRMENT AND HEARiNG DiSABiLiTY

The Shorter Oxford English Dictionary on Historical Principles (Little et al. 1973, p. 1027) defines impairment in one sense as being ‘(i) unequal, unsuitable, inferior and less valuable while in another sense it defines it as (ii) being lessened, damaged through injury or deteriorating’. The first operationalisation of impairment sits well with arguments for a fairer hearing, if people are in fact treated poorly or seen to be inferior because their hearing changes. This use of the word impairment is problematic because it suggests that there is a selfevident reason that one can be justifiably treated poorly because one’s status is essentially inferior; it is essentially stigmatising. The second operationalisation of impairment would probably sit well with writers such as Shakespeare (2006) who would argue that impairment is the brute reality of existence facing those whose hearing changes. He would argue that it is a fact that one’s hearing has deteriorated. From the sociological perspective though, notions of impairment problematise the issue within the individual. And to the extent that it is an issue for individuals to adapt to, one might argue, well that is all fine and good. The issue though is that changes in hearing constitute far more than an issue for given individuals – hearing and the way we communicate with each other are social issues, particularly in an ageing society. This perspective raises several issues. First, when the way one hears and communicates changes for one in two people aged over 60 years of age, and that we accept that most of these people are someone’s parent, grandparent, sibling or friend, we have a social issue to contend with. Second, the vast majority of people whose hearing changes simply do not identify with the word impairment; it simply does not relate to how they see themselves. Indeed, most people in this situation first of all are not deaf. At best, people might use a phrase such as my hearing is not as good as it used to be or that it has dropped off a bit. Similarly, studies (for example, Hogan et al. 2001) have shown that people who rate their hearing as fair, rather than good, tend to have undergone more extensive changes to their hearing than others. Conventions exist for how people have been referred to in the past. The phrase Deaf people is typically used to refer to people who were born deaf or acquired their loss of hearing early in life and use sign language as their primary mode of communication. Notably, Deaf people have adopted a social or cultural model to describe who they are. The phrase people with hearing impairment is commonly used when referring to people whose hearing changes later in life due to physical changes as a result of changes in the auditory system within the body. Notably this phrase has developed out of a medical discourse which had its origins in a mode of governance whose first concern was not with the welfare of people who communicated in ways outside the norm. As such, in a text which is concerned with changing and improving the social position of people whose communicative ability is perceived to be different to the mainstream (even if it is in fact the mainstream itself), we are reluctant to refer to people 4

INTRODUCTiON

as having a hearing impairment and have been seeking a phrase that would particularly disrupt the dominant discourse and hopefully challenge people to move beyond the current situation where many are simply uncomfortable to identify with hearing disability in any manner at all. So what language might be used? The terms ‘loss’ or ‘lost’ may have similar problems. Losing one’s hearing suggests carelessness at best (with apologies to Oscar Wilde) and damnation at worst (in the biblical sense). A phrase such as people with pretty good hearing would work well, in the sense that people say that their hearing is good, but meaning that it is not great. But it is clumsy as are phrases like marginal and edgy. We spent quite some time exploring the utility of the phrase – people with fairer hearing to draw attention to the unequal social position of people living with hearing disability. The Shorter Oxford English Dictionary on Historical Principles (Little et al. 1973, p. 719) provides the basis for an exegesis of the word fair as it is used in this context. Fairness encompasses issues such as equity, legitimacy and a life which is free from discriminatory practice. It is also to do with the average and the normal and with something which on the first encounter is quite socially acceptable. The word fair also speaks to questions of beauty and promotes notions of tolerance, non-violence and peace. Fair speaks to continua such as in notions of light and darkness where neither is better nor worse, but simply different as one from the other. It also conjures up notions of vulnerability which is appropriate in the context of the marginality which people with hearing disability endure presently. A focus on equity is important because in our current cultural context fairness and social legitimacy are concerned with questions of social inclusion and participation and not with notions of deficits within the body. The word fairer also speaks to the outcomes which this group seeks, which is ‘a fair go’ in western society. The phrase may also encompass the needs of people with other experiences of hearing disability, taking into account issues with processing information primarily in an auditory format and people with Meniere’s Disease. We do not expect that our use of these phrases will be the last word on the issue. We do hope though that this book will stimulate critical thinking among people with hearing disability, that it will motivate people to think more critically about how we are positioned socially and in turn, that such a space will open up a dialogue from which a better language will emerge. Current Perspectives and Approaches to Hearing Disability

As we will demonstrate within this text, for the majority of people, hearing impairment is acquired. While for some the onset of hearing impairment can occur in childhood, for most it occurs in adult life. For this large group of people 5

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access to psychosocial support services and assistance that is not concerned with the provision of a device has always been thin on the ground. Our view is that while devices may be useful, if this is the only form of support or assistance offered to people with hearing disability, it is simply not sufficient. Three critical issues underscore this view; the medical model of disability (sometimes referred to as the deficit-tragedy model), citizenship and social position. The medical model of disability has its origins in 19th century England and Europe and we give this issue particular attention in Chapter 1. From the sociological perspective this model is problematic because it locates the issue of disability solely within the body. This approach suggests a deficit model of the body, a deficit that is readily solved in the shorter term, by the use of devices, and in the longer term by genetic work and/or the regrowth of hair cells or other parts of auditory system. Such a deficit model sits logically within Parsons’ (1951) model of the sick role, wherein a person with hearing disability is morally required to do their bit for society by taking on devices and making a ‘good fist’ of the difficulties they encounter in everyday life. The model is also consistent with the logic of phonocentricism, where the right thing to do is to seek out devices or modifications to the body to enhance participation in a society centred on hearing and speech. The rejection of devices as such would be beyond comprehension within a phonocentric value system. There is also a naivety in western culture about the efficacy of existing devices, as though they enable a person to hear normally. They simply do not. A local shop keeper, for example, has a cochlear implant. He tells us that on a one-to-one basis the device makes an enormous difference to his quality of life; but put him in a noisy group setting and he is unable to communicate; he may as well have stayed at home. Our society has little insight into the social nature of communicative interaction. The taken-for-granted response in our society is that it is the responsibility of the individual to overcome the day-to-day interactive problems that they encounter as individuals. Ironically, the very successful person with hearing disability is seen as one who plays music, dances in the ballet or sings in choirs and so forth; akin to the person in a wheelchair who goes mountain climbing. It is hardly surprising that people with disability generally reject this characterisation of disability and the unrealistic expectations it places on them. In the 1980s the world-wide movement towards the social model of disability arose. Increasingly, people with disabilities were becoming tired of being identified as ‘the ones with the problems’, particularly when the cause of such problems (for example, communication breakdown) is as much a social, as it is an individual, issue. Moreover, it was and remains clearly evident that from a collective point of view that overcoming did not work. For people with hearing disability we evidence this fact in detail in the next chapter. People with disability generally and people with hearing disability specifically are highly marginalised from western society and this marginalisation is evidenced in poverty, inequality and social exclusion. 6

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We have what Goggin and Newell (2005) referred to as a social apartheid. Towards the end of the 20th century we saw the emergence of a disability rights agenda, manifesting as it did in acts of parliament concerned with disability discrimination. But socially, the agenda has not progressed far from here and the issue of citizenship and disability has struggled to make it onto the political agenda. Writing at this time Anna Yeatman (1994, p. 73) shaped the issue of citizenship in the epigraph at the beginning of this chapter. Here Yeatman called attention to the conditions under which a person can be admitted to the status of citizen and therein enjoy the real benefits of participating in society. This text takes the position that people with hearing disability do not always get a fair go in our society; that their citizenship is compromised because they do not get to enjoy the benefits our societies have to offer and that to date the polity has had little regard for their concerns. Indeed, the policy agenda impacting on our cohort is predominantly controlled by people who are not the end users of the services designed to assist us and whose goals are increasingly oriented to generating profits rather than addressing the social wellbeing of people with hearing disability. In addition, a key issue in the hearing disability sector is that many people do not view that the participative ‘solution’ offered is inherently limited, if not centrally flawed. Even when services are focused on personal deficits and user compliance within a phono-centric culture, there is little if any pushback against government or providers that the system, as it were, is not working well enough to result in social equality. Moreover, many are, as Vic Finkelstein (1993) has pointed out, so marinated in phono-centricism that they participate in their own oppression. If people were not so thoroughly marinated in phono-centricism, if they did not think that the extent of disadvantage experienced by this cohort was acceptable, the outrage would be palpable and the call for change would ring out long, loud and hard until it was heard. Rather our society is ‘deaf ’ to the impact that hearing disability has in people’s lives; it attracts little if any attention in the media; it is a social silence. And wasn’t silence once described as consent? The Need for Change

There is indeed a palpable need for radical social change around hearing disability in western society and this book seeks to contribute to a call for such action – to end the silence about these silences. As such it is intended to challenge people to think about and to come to terms with how hearing disability has come to be an issue about citizenship in our society. It is our hope that in reading this book, the ‘scales will fall from people’s eyes’; and it will become apparent as to why hearing disability has to be on the policy agenda. To achieve 7

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this end, the first part of this book considers the wellbeing of people with hearing disability through the lens of sociology and social psychology while the second part addresses the scope of policy and practice change which needs to occur in order that attitudes and services come into line with, and then go well beyond, the National Disability Agreement (see Chapter 6). It provides for a practical approach to the development of a program of social change centred on improving the social position of people with hearing disability. As social scientists, theory and practice are inseparable. One cannot adequately deal with the social consequences of hearing disability if one does not understand, for example, how the social relations of disability were constructed or understand the social relations of stigma. Social theory helps us see how our understanding of a given group in the community has been constructed over time, noting the values and interests which lie behind constructing peoples’ identity and behaviour in one way over another. To conduct practice in the absence of such knowledge simply serves to legitimate a set of social relations which people with hearing disability find oppressive, evidenced by the fact that so many people avoid identifying as having hearing disability because of the stigma associated with it. Similarly, at the interface of theory and practice, pathways need to exist which people can use to navigate a change process, taking the insights from theory and using them to change their lives and the social relations which oppress them. Many sociologists are inherently uncomfortable about the individualising nature of community and clinical services while service providers question the relevance of social theory to the fitting of a hearing aid. For us, the two cannot be separated. Following Marx and Engels (1969) we support the tenet that the purpose of social research is not just to describe things but to contribute towards changing the social order. A socially informed approach to hearing services must engage with real people in real ways. Similarly service providers need to be aware of the value base which underpins the service design they are engaged in and which seeks to construct people and their behaviour in certain ways. Working within principles of citizenship, we also need to engage with people with hearing disability in an empowering dialogue which legitimates their experience of marginality and which seeks to enable a dialogue to emerge about the extent to which they consent to being remade in certain fashions by techno-clinical processes. And jointly, social researchers and people with hearing disability can in turn engage in dialogue with policy makers and the professions and call them to account for the work they do, for the values they promote through their work, the forms of social activity which their work valorises or marginalises and for the outcomes they achieve and those they fail to pursue. Moreover, the education of clinicians involved in hearing services needs to be informed by the social. To date this has not happened. Certainly, in the past 15 years audiology has realised that it has to be more client-focused, but this 8

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insight has only transformed into a more pleasant interface between provider and service user. The fundamental pedagogy of service design and provision have not been rethought or implemented; its focus remains on auditory inputs, not outcomes in peoples’ lives. While educators persist in keeping the social and the clinical separate, the very real limitations which exist in the structuring of hearing services will persist. We return to these issues in the closing chapters of this book where we discuss in greater detail the need for a restructuring of hearing services. The Structure of this Book

The need for a citizen-centric approach to hearing is developed in the first part of this book. Such an approach, while deeply informed by sociology, goes beyond the bounds of this discipline, engaging as it does with social theory, disability studies, community work, social psychology, occupational therapy, social epidemiology and the provision of community-based services. Our study is concerned with the critical question as to whether the social difficulties people encounter arise as a result of the poor choices made by individuals or whether such outcomes result from the systematic treatment of one group by others in our society – what Mills (1970) referred to as the question of individual problems or social ills. The medical model locates the problem within the individual while the United Nations Convention draws attention to the nature of social relations which underpin ableism. Bourdieu (1977) readily demonstrated that social values deeply influence peoples’ socialisation. Foucault (1988) showed how such values come to shape the design and implementation of services as well as the training of service providers. It is critical therefore to stand back and examine the development of social attitudes towards hearing, and to pose the question as to the extent to which such values continue to influence individuals and institutions today. Chapter 1 begins this process with a review of the development of such values. In turn it provides a profile of social position of people with hearing disability. This social profile makes it evident that on almost every social indicator available, people with hearing disability fare more poorly than the rest of society. These indicators draw attention to the poorer educational outcomes, employment opportunities, social relationships, physical health and social standing associated with hearing impairment. People with hearing disability have to participate in hearing society but they are far from being equally included. The work of the Surrealist artist, Joan Miró, captured much of this insight in his landscape – the Hare. The story behind the hare is one in which the central character lives in two worlds but is marginal to both – what Paul Jacobs (2007) referred to as the neither/nor experience. To this end we assert that the social relations of hearing 9

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impairment are inherently unfair and we bring forth the issue that stigma and marginalisation are key issues impacting on people with hearing disability. Chapter 2 then takes up the issues of stigma and marginalisation as it manifests itself in the lives of people with hearing disability, addressing as it does the social psychology of stigma. The chapter provides theoretical insights into the role that stigmatised social identity plays in creating barriers to the personal change and how it serves as a barrier to the effective delivery of hearing services. The stigma that surrounds acquired hearing impairment and loss (which has been present for centuries) means that those with hearing disability are more likely to deny their condition, even if this disadvantages their health and wellbeing. Stigma and identity concerns create psychological barriers that inhibit people from accepting help from which they may personally benefit. To remove these psychosocial barriers to assistance, new forms of hearing services are needed that address identity-related issues, as well as collective strategies that address stigma itself. From the perspective of social psychology and social identity theory, this chapter provides evidence for the need of an outreach strategy which more readily engages people in a change process. This chapter also provides a critical review of the literature on hearing and mental health. It reports that there is in fact very little evidence to sustain a discourse of people with hearing impairment exhibiting a high prevalence of mental illness. Yet at the same time, this cohort exhibits behaviours consistent with those who experience stress and conflict as a result of being stigmatised. Having established that the social relations of hearing are inherently unfair, Chapter 3 provides a documentation of efforts across the western world to address this inequality. Uniformly, the research community has focused on stigma (and its sequel) as the social issue of primary concern in hearing disability. However, it took the work of two Canadians – Raymond Hetu and Louise Getty, to consolidate this body of work into a coherent conceptual framework that could be used to drive social and practice change. This body of work came to be known as the Montreal Model. These first three chapters constitute the base case for a fairer hearing for people with hearing disability. Chapter 4 moves from these insights and puts forward an argument for genuine social paradigm change in hearing services. The case for paradigm change is based on well-developed and proven theories of social welfare services developed within the context of welfare capitalism. The chapter juxtaposes two quite distinct approaches to hearing services. The first approach embodies the literature from the previous chapters on an approach to hearing services which takes for granted the current form of social relations and governmental processes, based as they are on assumptions about how communication should be conducted and how people with hearing disability should adapt to communicate in a ‘hearing world’. The discussion notes the coherency of the taken-for-granted way of seeing people with 10

INTRODUCTiON

hearing disability, pathologising as it does, the social outcomes of both compliant and non-compliant behaviour. The second approach takes up the question of citizenship and considers how the structuring of social processes might look were the current historical influences of governance set aside and where the legitimacy and equity of social outcomes sat at the centre of social policy concerned with the wellbeing of people with disabilities. While such comparisons are intellectually interesting, it remains nonetheless important that people with hearing disability are able to progress their claims for change with policy makers. To this end the chapter, drawing from a raft of materials concerned with social policy within welfare capitalism, concludes by identifying the basis upon which people might legitimately be able to make claims for change on the state, in these neo-liberal times. We understand that this work will greatly challenge not just people with hearing disability, but many existing service providers. However the issuing of such challenges is necessary in order to bring about paradigm change. Chapter 5 works from the recognition that a lot of oppressive discourse has been internalised by people with hearing disability, and approaches these questions from the perspective of people with hearing disability. Historical approaches to hearing interventions have frequently been based on the assumption that the basic barrier to effective interventions is that some people are motivated to seek help (see for example Hull 1982, 2010) while some are not. By contrast, this chapter takes up Latour’s (2004) insight on the need to learn to be affected by changes in one’s life and in turn reflects on what being affected by hearing disability may mean. The chapter then proceeds to explain how people with hearing disability can participate in an empowering fashion, to learn to be affected and come to engage with having hearing disability as part of their social identity. Central to the theoretical underpinnings of the approach are assumptions that people with hearing disability understandably experience reluctance, stigma and misperception. The chapter empirically tests these concepts and finds that these dynamics are evident in people’s daily experience with hearing disability. Having reaffirmed the theoretical underpinnings of this approach, the chapter outlines the principles of a more effective engagement process, taking into account concerns from practitioners as to the cost-benefit of such a program design. This chapter also adds in a Foucauldian perspective, as we explain how the deeply negative social aspects about hearing impairment are written into our doxic, taken-for-granted perspectives (collective consciousness as Jung would suggest). In doing so we contend that many of these perspectives have not only been deeply written into the doxicity of disability and normalcy, but they have not been contested. And having not been consciously contested and discarded, they continue to shape, however subtly, both societal as well as individual attitudes to hearing impairment. Indeed, if it has been a multi-generational effort to weed out 11

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the social negativities of sexism and racism, why would one expect that the experience of ableism would be any different? Chapter 6 lays out a program of change in hearing services. It calls for a revaluation of attitudes towards hearing disability, for reform in the governance of hearing services, for the retraining of hearing service providers, and for a diversification in the kinds of models of hearing services available. It calls for the development of a code of conduct and social responsibility for manufacturers and sellers of hearing devices, such that hearing services shift to a focus on outcomes in peoples’ lives while moving away from commercial approaches that stigmatise hearing disability. Finally it argues for a re-orientation of hearing services policy such that it aligns with broader disability policy and that is focused on truly enabling people with hearing disability to take their place in the world. To this end, Chapter 6 brings forth a distinct set of principles and policy changes that are required so that hearing services may serve to better enhance the lived experience of people with hearing disability by addressing the social, health and economic barriers that they face. And that in keeping with international best practice in disability services that the rights of people with hearing disability, as stated under the International Convention for Persons with Disabilities,3 be respected and upheld. This would entail that 1. Services ensure that: –– people with a hearing disability achieve economic participation and

social inclusion –– people with a hearing disability enjoy choice, wellbeing and the opportunity to live as independently as possible –– families and carers of people with a hearing disability are well supported. 2. Services provided to address hearing disability are offered within a holistic context, taking into account a diversity of approaches to service delivery to include, but not be limited to: –– health promotion aimed at addressing preventable hearing disability –– community education redressing stigmatising attitudes and practices and promoting the social participatory needs of people seeking access to social and communicative inclusion, addressing but not being limited to people who experience difference in hearing and communication –– community-based delivery of psycho-social support programs tailored to meet the distinct needs of the respective community groups (i.e. a broad church of service delivery models and modules) including early intervention for children, and –– education and employment support services. 3 http://www.un.org/disabilities/convention/conventionfull.shtml 12

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3. the structure and delivery of hearing services should be reviewed so that

they more properly comply with outcomes oriented principles such as the Australian National Disability Agreement 4. that services be reoriented away from a device-centric focus and focus on peoples’ outcomes such that they ensure service users enjoy full and effective social participation in western society, and that 5. significant and enduring programs of community education are initiated to address and remove stigma associated with hearing disability. This book is intended to contribute to changing the social landscape in which people with hearing disability live. We have seen the ideas in this book put into practice and know their capacity to change people’s lives and society for the better. Systematically applied they have the potential to contribute to making the world a fairer place for people with hearing disability. We truly hope that you are able to become more of a part of this change process and that you too can contribute to making hearing disability a fairer experience for yourself and/ or the people you work with. One would like to think that within 10 years this book will be redundant; a quaint account of how things once were.

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Chapter 1

Hearing as a Social Issue Anthony Hogan and Rebecca Phillips

In the Introduction we presented the idea that the social landscape, in which people with hearing disability live, requires attention. This chapter delves into the depths of this issue in two ways, first by arguing that disability in general and deafness in particular, has been the focus of a negative form of governance for over 150 years and second by examining the extent to which (if at all) this form of governance has served to the detriment of people with hearing disability. To this end we recount, through the lens of historical sociology, the social construction of notions of disability, deafness and impairment. This work builds upon Hogan (1997) while also noting that quite recently more and more researchers (e.g. de Feu and Chovaz 2014) are recognising the antecedents of the values of disability that still problematise life for people today. In turn we provide a social profile of people with hearing disability to illustrate who these people are that we keep referring to and why their social position might be an issue. We draw primarily on Australian data and provide an overview of research literature on a range of issues including wellbeing. The aim of this chapter is to document as much as we know about the social position of this cohort in the one place. The Governance of Deafness

Prior to the industrial revolution, most people with disabilities in western societies were left to live freely (or at least as freely as anyone else) (Finkelstein 1980). But then something changed in the manner in which people with disabilities were treated. Attitudes as to how the person with a disability was expected to manage themselves also changed. In understanding the social standing of people with hearing disability today it is important to know what has changed, and why, because we consider that the essence of the values of yesterday still linger deeply within the design of hearing services today (we return to this issue in later chapters). We situate these changes within the context of broader 19th century-social movements which resulted in the:

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• further social marginalisation of notions of disability • devaluation of the notion of interdependency and the emergence of a

discourse of self-sufficiency • construction of the person with a disability as a moral menace, and • the birth of phono-centrism in the governance of deafness and hearing impairment. Social relationships have historical origins. An appreciation of the historical origins of a particular set of social arrangements must be gleaned from understanding how specific groups, interests and discursive practices came to be aligned at a particular moment in history (see Foucault 1991). For philosophers such as Foucault (1988), there is not simply ‘one set’ of social relations that require documentation – there are layers of relations made up of ideas, social forces, institutions and competing interests that interact with one another at any one time. Depending upon how these combine, and based on who comes to work with whom at a given time, an overall governmental process made up of ideas, beliefs technologies and behaviours (individual, social or instructional) result. These will not be the only ideas, beliefs and practices of the day, but will probably be the dominant ones at a given point in history. Depictions of Disability

It is fair to say from the outset, that the historical depiction of people with disability, including people who are deaf or hearing impaired, has not been a positive one. It is important to recognise these depictions and constructions but in doing so, the reader may wish to steel themselves for the experience. Moreover the social construction of notions of disability developed over time, particularly in regard to their place (or the lack of it) within rights to citizenship. The literature shows that throughout medieval times, communities did not differentiate between people who had various disabilities that impacted upon their spoken communication skills -they were essentially treated as fools (Kanner 1964; Neugebauer 1978). Overtime, deaf and more seriously hearing impaired people were caught up in the differing labels and groupings that emerged. These new groupings included notions of cretins (Kanner 1964), the feebleminded, idiots (Kanner 1964, p. 39 and 42), mental defectives (Trent 1994) and the mentally deranged (Rosen 1968). People with disabilities were also likened to Darwinist notions of urbanised savages. Lane (1993) cites one example of these attitudes from the French school, led by otologist Itard: ‘(Deafness) condemns the victim to moral isolation, impaired speech, and incomplete intellectual development. The deafmute appears like a civilised man, but inwardly there is a barbarity and ignorance of a savage’ (cited in Lane 1993, p. 73). 16

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Lane (1976) points out that at times children with disability were also associated with reports of ‘wild’ or abandoned children. The Wild Boy of Aveyron (Lane 1976) is a latter day example of many so-called feral children who survived by living off the land. This was not the only contribution Darwinists made. The society of the day was concerned about issues of difference such as those between humans and animals, and the so- called ‘savage’ and the ‘civilised’ person (Young 1985). Durant (1985, p. 288) observes that ‘[R]eason, will, consciousness, [and] morality … were regarded as the distinguishing marks of man’ from apes. The ability to use spoken language, to express verbally and understand logical thought, was seen as the factor which differentiated humans from animals. Sign language, presented as a collection of animal-like noises, gestures and primitive pantomime, could clearly be seen to be more ape-like than human. For Darwin, humans had passion that had ‘clearly discernible roots in the animal world’ (Durant 1985, p. 289). Apes, savages and man were but a series of changes over time, but they remained connected nonetheless (Durant 1985). Changing Perspectives on Interdependency and Citizenship – the Birth of Phono-centricism

The various texts cited above evidence the fact that attempts to govern deaf people are not new. These writers (and others noted below) have pointed out that deaf people were treated differently in various societies. Such interventions have included the killing of deaf children, the denial of property rights, the denial of citizenship and a denial of access to rites of social passage (for example, not being allowed to participate in church rituals). Such communities privileged a culture concerned with able-bodiment centred upon spoken communication (Edwards 1994). As such hearing and speech were constructed as being central to citizenship and as such phono-centricism was formalised into social policy. In medieval times, if people with disabilities survived, they did so either by working on the family farm or in village shops as dependents or they lived as beggars, paupers and social outcasts (Lane 1984). Under Elizabethan laws, families were responsible for the maintenance of the ‘poor, lame, blind, and impotent’ family members, and ‘those without labour’ (Corrigan and Corrigan cited in Dean 1991 p. 31). The Reformation saw the break-down of the parish welfare system and in consequence new ways were needed to address the needs of those deserving poor who were thought worthy of social support. However, unlike ‘traditional almsgiving the new system categorically excluded the vagrant, and especially the able-bodied, beggar’ (Von Greyerz 1994, p. 39). From the late 16th century, access to ‘selectively’ provided social support would depend on the applicant’s ability to comply with socially prescribed conditions of eligibility, based upon a judgement as to the extent to which a 17

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physical impairment prevented a person from undertaking work. In the coming centuries, extensive efforts were concentrated on the differentiation of people with disabilities into various administrative categories, each of which were concerned with the remaking of people with disabilities so that their behaviour might conform with that of the rest of the community (Kanner 1964; Rosen, Clark and Kivitz 1976). All these people, including the latter-day advocates of the various deafness movements, formed part of a general social movement of the 19th century that was concerned with the categorisation and administration of people with disabilities. The goal of such administration was to provide a form of governance which supported the moral and material economies of the day. More importantly still, these value systems laid down the terms under which the emancipation of people with disabilities could emerge for the first time in many centuries. Before examining this key issue in greater detail, it is important to discuss the socio-historical contest (that is, consider the archaeology of the governmental arrangements) which emerged through concurrent social movements of the 18th and 19th centuries. These movements provided the overarching moral framework in which the administration of disability came to be situated. During these times key principles of social policy emerged. These included the value that: • the care of people with disability was a public responsibility (Kanner

1964, p. 39)

• that this responsibility included the requirement to house and educate

people with disability(Howe cited in Kanner 1964, p. 42)

• such education and training would enable people with disability to

become productive members of society (Trent 1994, p. 35) and,

• the utilisation of people with disability in society would serve to prevent

crime, poverty and dependency on the state (Trent 1994, p. 84).

These principles manifested themselves in the development of a wide variety of institutions in America, Europe and the United Kingdom. However, their development was greatly aided by the social construction of disability as being part of the broader moral menace that was taking shape across the world. Constructing Disability as a Moral Menace Never let a serious crisis go to waste (Mirowski 2013).

The 19th century commenced in the shadow of the guillotine, symbolic of the overthrow of the French aristocracy. Weeks (1986) observed that a moral panic drove the 19th century: 18

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[T]he moral panic crystallises widespread fears and anxieties, and often deals with them not by seeking the real causes of the problems and conditions which they demonstrate but by displacing them on to ‘Folk Devils’ in an identified social group (often the ‘immoral’ or ‘degenerate’) (Weeks 1986, p. 14).

The values underpinning this panic were displaced and confused with other movements such as Social Darwinism (discussed below). Weeks suggests that the essence of the moral panic in Britain of the 1840s and onwards was based on the fear that the French Revolution resulted from a moral decline in the community of the day and that a similar fate awaited Britain unless this decline was halted. It is recalled that at this time Britain was the dominant world economy and as such (and in keeping with Marx), its social concerns were the concerns of many countries. Fears arising from the moral panic were expressed in a political movement to control sexual behaviour that attempted to shape people individually for the sake of the general well-being and prosperity of the whole population: ‘[T]he two are intimately connected because at the heart of both is the body and its potentialities’ (Weeks 1989, p. 34). Social control then focused on the morality of the family. However, unlike aspects of the deafness debate that likened control of communication systems to repression, Weeks (1989) argues that [T]he thrust of these discursive creations is control: control not through denial or prohibition, but through ‘production’, through imposing a grid of definition on the possibilities of the body (Weeks 1989, p. 7). Weeks concluded that a centralised morality resulted; that is, there was one form of acceptable moral behaviour, based as it was on the social values of the phono-centric upper classes. The use of the body subsequently became a moral concern not because of sex but also disability. Notably the presence of deafness in a family was also held to reflect upon the morality of the family: [T]he moral to be drawn from the existence of the individual idiot is this – he, or his parents have so far violated the natural laws, so far marred the beautiful organism of the body, that it is an unfit instrument for the manifestations of the powers of the soul (Howe 1848 cited in Rosen, Clark and Kivitz 1976, p. 34).

Thus the negative social consequences of modernity were generalised into a folk devil – a moral menace that was constituted by people who were sick, poor, criminal or had a disability. The categorisation of specific marginal stereotypes and behaviours followed. Deaf people were the target of many of these stereotypes: • ‘the deaf-mute is by nature fickle and improvident, subject to idleness,

drunkenness, and debauchery, easily duped and readily corrupted’ (Itard cited in Lane 1993, p. 118). 19

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• ‘deaf and hearing impaired people are by many accounts like children.

They have want of foresight and are ignorant. They easily allow themselves to be carried away. They need to be supported, retrained, directed; they need more than a benefactor, they need an instructor’ (Gerando cited in Lane 1984, p. 145). • deaf people were constructed as an evil or pagan identity or as in some way mentally incompetent (Bender 1970; De Saint-Loup 1993; Edwards 1994; Kanner 1964; Lane 1984) and as such in need of help. • the belief that people with disabilities that affected their social interaction could be left to their own devices unless they were ‘too dangerous to keep at home, or had no one to care for them, or who were socially disturbing’ (Rosen 1968, p. 139), and • the deaf person depicted as urban savage (discussed above). Taken together, a social construction emerged around people with disability which associated them with vagabonds, dependents, beggars and homeless people and as such they constituted urban savages who served as a threat to the viability of the emerging post-revolutionary social system. Just as wild animals could be tamed, people with disabilities were also to be the subjects of specific programs of moral and behavioural management that required all people to ‘achieve success, avoid idleness, temptation and luxury’ (Fusfeld 1994, p. 11). The governance of deaf people became relevant to broader society then when deaf people and others allotted to similar social categories posed a problem of social order and demands upon the state concerned with liberal individualism. Liberal individualism deemed the failure to provide for one’s self and family as evidence of a personal immorality and as a threat to ordered society. Even then, however, deafness was not considered to be a major issue. Bentham (1816) for example, only makes a passing reference to management of deaf people and does so only in the context of identifying the need to educate individuals in preparation for employment. In consequence, the State sought and continues to seek the minimisation and/or elimination of styles of living which might promote social and hence economic dependency. Importantly, the institutional responses of the day were not without their limitations. Trent (1994) notes that disability based-educational asylums were not achieving the expected results with people (i.e. people would learn skills and move into open employment) except in a few cases. Rather, even those who had been successfully skilled up tended to be retained to work in the institutions to maintain their financial viability (Trent 1994). Trent also reports that the focus of institutions also changed. Institutional training in the late 1800s was focused on enabling residents to work to support the institution, where they were destined to stay (Trent 1994). In turn the asylum movement worked to ensure that people with disabilities would not be independent; they would not 20

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work, but they would be held in custody, as icons of the stigmatised state of dependents in a society that also had no history of the feudal social relations of reciprocal dependency (Fraser and Gordon 1994; Pfeiffer 1994). Dependency and the Discourse of Self-sufficiency

Fraser and Gordon (1994) identify the notion of dependence as the focus of a social concern that underwent a radical transformation. Although this transformation commenced in the 16th century, the term found particular currency in the 19th century as differing interests struggled over the administration of paupers: [P]articular words and expressions often become focal in such struggles, functioning as keywords, sites at which the meaning of social experience is negotiated and contested (Williams cited in Fraser and Gordon 1994, p. 310).

Fraser and Gordon (1994) observe that in feudal times mutual dependency between land owners and the people who lived on and/or worked the land was integral to the fabric of the functioning ordered society. However, the influence of various revolutionary movements and the growth of the industrial state disrupted this system of social relations, particularly in Europe: [I]n the age of democratic revolutions, the developing new concept for citizenship rested on independence; dependency was deemed antithetical to citizenship (Fraser and Gordon 1994, p. 315).

Independence and citizenship came to be equated with wage labour. Dependency was individualised and understood to reflect the corrupt, flawed moral character of the individual (Fraser and Gordon 1994). Society, it was believed, needed to be protected from such people who elected to negate the implied social contract of personal sustainability. Gender politics also played a role in the governance of people with disabilities. Ryan (1981) demonstrates that much of the so-called charitable work associated with the management of dependency and poor people in America was undertaken by middle-class and elite women, who considered such work to be part of their missionary responsibility as Christians. The principal aim of women’s work was to bring about poor people’s ‘… religious and eternal salvation, but subordinate and tributary to this and highly important is the improvement of their present condition (The Benevolent Association cited in Ryan 1981, p. 211). Charitable work was undertaken as a private, secret activity, the Christian culture being such that merit in the eyes of God would not be won by those who 21

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paraded their good works before others. Nonetheless, this women’s movement became known for its ability to conduct large-scale charitable works (including schools and asylums), for nominal cost, with much of the labour consisting of altruistic, voluntary work – ‘a labor of love’ (Ryan 1981, p. 215). Ryan (1981, p. 216) points out that by the middle of the 19th century ‘women commanded through their charitable activities a vital post outside the home, one of crucial importance to the social order of the city’. Movements such as Oralism provided Christian women with an avenue through which they could undertake this charitable work. As Oralism was birthing in America, such women: … threw themselves into the work with all the zeal of religious fanatics. They were glad to become martyrs in such a cause; and I have no doubt that some of them would even have been willing to lay down their lives, if it need be, in order that the Deaf and Dumb should be taught to speak (Bell 1917, p. 20).

So then, these are the socio-historical origins of hearing services. But just exactly how successful was this vision in creating a group of people who would, as Alexander Graham Bell had envisaged, as a result of this work, be able to take their place in the modern world (Bruce 1990)? To answer this question we must consider the social position of people with hearing disability today. The Social Position of People with Hearing Disability

A social profile is one of the most basic tools that communities use to document their social position in relation to the broader community. Specifically it provides a profile of the key issues impacting on a group within the community and provides insight into who these people might be. Such data can be used by advocates, social planners and policy makers to assess the extent to which the available mix of advocacy and services fits the service demand needs of a specific cohort. In presenting this profile we readily acknowledge up front that some people with hearing disability want to focus on the positive; the good news story – one that tells the story as to what they are able to achieve. While we support this position we also hold the view that for many, the experience of hearing disability is not a positive one and that it does a disservice to them and their wellbeing if as a society we simply skip over the difficult bits; and there are unfortunately a lot of difficult bits to deal with. In the Introduction we asserted that people with a hearing disability are at risk of social inequality. It is time to put some evidence before you. To this end we commence with an overview of the available demographic and epidemiological data before proceeding to review the health and social research available for adults. 22

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Basic Demographics of Adults with Hearing Impairment in Australia Incidence

Wilson (1997) reports that 22.2 per cent of the population aged over 15 years in Australia have a hearing impairment (worst ear measure). Prior to the age of 50 years, hearing impairment is not particularly prevalent in the population. However, post 50 years of age, the prevalence of hearing impairment rapidly increases for both Indigenous and non-Indigenous populations (see Tables 1.1 and 1.2 below). Table 1.1 Age

Estimates of hearing impairment amongst Australians aged over 15 years Hearing impairment greater than 25 decibels

Population

Estimated population affected

15–49 years

5.2%

9,609,333

499,685

50–59 years

28.3%

2,578,204

729,632

60–69 years

58.7%

2,006,368

1,177,738

70 years +

73.5%

1,960,217

1,440,759

Total

3,899,127

Source: Data extrapolated from Wilson (1997) and the Australian Bureau of Statistics1

Table 1.2 Age

Estimates of hearing impairment amongst Indigenous Australians aged over 15 years Hearing impairment greater than 25 decibels

Indigenous population

Estimated population affected

15–49 years

16.6%

15,100

2,356

50–59 years

28.3%

41,703

11,802

60–69 years

58.7%

21,616

12,689

70 years +

73.5%

33,288

24,467

Total

51,313

Source: Data extrapolated from Wilson (1997) and the Australian Bureau of Statistics2

1 https://www.abs.gov.au/Ausstats/[email protected]/mf/3235.0 2 https://www.abs.gov.au/Ausstats/[email protected]/mf/3235.0 23

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Adjusting for age effects, the population estimate of hearing impairment in Australia is approximately 4 million people or just under 20 per cent of the population (see Table 1.1). This estimate would suggest that there were also approximately 51,000 Indigenous people with hearing impairment (Table 1.2 above). When compared with the estimate of Indigenous children with hearing impairment the adult estimate looks to be very low. The numbers of Indigenous people with probable hearing impairment is notable given that some 200,000 people, mainly pensioners, go through the Australian Government’s Hearing Service Program each year. If epidemiological studies validated the above estimate, it would suggest that Indigenous adults are seriously under-serviced, even by the above device-centric program. The Impact of Hearing Impairment on Communication

Importantly, not everyone who has a hearing impairment has specific communicative access needs. Based on national data from the Survey of Disability, Ageing and Carers (SDAC) we find that 72 per cent of respondents who identify having a hearing disability report that they have little or no difficulty communicating (see Figure 1.1). However, 28 per cent of people with hearing disability report at least moderate communicative difficulty. If we take

Figure 1.1

Self-reported level of communication difficulty

Source: Data sourced from the ABS Survey of Disability Ageing and Carers 2003

24

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this latter number (28 per cent) as the baseline for those in the community whose experience of hearing disability may definitely need to be accommodated socially, the population is approximately 1.1 million Australians.3 This smaller but more specific group are proportionately more likely to be male (60 per cent) than female (40 per cent) and more likely to be aged over 50 years. Importantly though, some two-thirds of people report non-age related causes for their hearing disability including being born with a hearing impairment (14 per cent) or having had a disease processes of the middle (10 per cent) or inner ear (2 per cent) or had excessive noise exposure (36 per cent) (ABS 2009). The Use of Technology to Assist Hearing

One third of respondents in the SDAC survey reported using hearing aids to assist with hearing while a further five per cent reported using some other form of assistive listening device. Results from another major national study, the Household Income Labour Dynamics Australia survey (HILDA) were somewhat similar with 22 per cent reporting using electronic communication aids (Hogan 2012). Figure 1.2 provides data on the extent to which respondents report hearing aids being beneficial to hearing. A large majority (85 per cent) of SDAC respondents report that the aids are of benefit to them. This contrasts significantly with data reported in Lancet (Smeeth et al. 2002) where more than 40 per cent of respondents report being dissatisfied with the hearing aids they have received.

Figure 1.2

Impact of hearing devices on ability to hear

Source: Data sourced from the ABS Survey of Disability Ageing and Carers 2003

3  http://abs.gov.au/ Population estimate accessed 15 May 2014 of approximately 23.5 million people. 25

HEARiNG IMPAiRMENT AND HEARiNG DisABiLiTY

It is important that this analysis takes into account both the level of device usage reported in the HILDA data, which is much higher than that found in other studies where the usage rate is around 16 per cent (see for example Wilson et al. 1992; Hogan et al. 2001), and the extent of satisfaction users have with the devices. Importantly, the data suggest that people identifying with having a hearing impairment in public surveys, such as the SDAC and HILDA, in fact have a greater degree of hearing impairment than the average person with hearing impairment in the community. We therefore must approach these results with some degree of caution and treat the findings as useful thematic insights rather than as definitive statistical outcomes. The Impact of Hearing Impairment and Disability on Adults

While there are a wide variety of issues impacting on people with hearing disability, first and foremost the issues stem from the stigmatisation of people because they breach the taken-for-granted rules as to how one ought to communicate in a phono-centric society. Anthony Giddens (1984) points out that negative judgments are made about people when they fail to conform to our most basic expectations as to how they should interact with us. Hearing disability disrupts the taken-for-granted, the privileging of phono-centricism. Properly acknowledged, fairly treated and appropriately included in social settings, hearing disability is not disruptive to the social. But because society has not taken an equity approach to hearing disability, phono-centric attitudes and behaviours persist and individuals can be marginalised and treated as socially incompetent (Jones et al. 1987) because they do not follow certain unquestioned rules about how we as a society should interact. The consequence of this ablest behaviour is the stigmatisation of the person who hears and communicates differently and this stigmatisation has cascading impacts on wellbeing, health, economic opportunities and social inclusion. The first change that is required is not more therapy for people with hearing disability, but a questioning of the privileging of phono-centric behaviours in our society. Stigma and Hearing Loss

We will present extensive arguments in later chapters in this book that justify the position that hearing disability has been stigmatised across millennia. If one accepts that people with hearing disability are stigmatised it would come as no surprise that they seek to avoid and manage this stigma by: • denying that their hearing is different • being reluctant/embarrassed to talk about difficulties 26

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• misperceiving the nature of the problem (accusing people of mumbling/

believing that others no longer speak as clearly as they once did)

• bluffing (pretending to understand, smiling, nodding, laughing when • • • • • •

others laugh) passing (pretending to ignore requests not understood) minimising problems experiencing social conflict due to misunderstandings withdrawing socially avoiding non-critical social activities expecting technology to do more than it can to help (Hetu 1996).

The re-enforcement of dominant stereotypes and values over time provides legitimation for the continuing stigmatisation of people with hearing disability. Such legitimation arises within a highly complex interplay of values and attitudes in the media as well as the behaviours and practices of key institutional, professional and economic interests. The media, as an example, frequently runs stories about the success of technology but appears to rarely run stories about what is really happening in this community. It is completely understandable that people with hearing disability would want to avoid being stigmatised, particularly by identifying as a member of the cohort. There is little if any criticism of the phono-centric nature of our society or the extent to which existing service models require people to identify with a negative social position and to engage in social behaviours which have not been socially legitimised (for example, asking people to speak slowly and clearly or to turn down the music) and to put onto the body devices, which highlight the presence of a hearing disability. Individuals with a hearing disability have to trade off the risks of further stigmatisation with any benefits that might arise from behaviourally identifying as having a hearing disability. Both options, it seems come at a high person cost. Let us look at the social and in turn health impacts of transacting hearing disability in a phono-centric world. Hearing Difference, Wellbeing and Health

Psychosocial effects of hearing disability are evident in the literature and noted in a report of the Australian Senate in 2010.4 From the literature we know that people with hearing disability report: • increased rates of affective mood disorders and poorer social relations

(Hetu et al. 1993)

4 http://www.aph.gov.au/Parliamentary_Business/Committees/Senate/ Community_Affairs/Completed_inquiries/2008–10/hearing_health/report/index 27

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• higher rate of overall psychiatric disorders (Hogan 2001) • persistently experiencing problems hearing in background noise – even

• •

• • •

when using hearing aids (Hetu and Getty 1991) –– the inconsistency of problems across social settings is confusing and de-legitimises the need to seek help (Hogan 2001) role breakdown leaving them feeling less confident about their ability to function socially (Hetu and Getty 1991; Monzani et al. 2008) trouble fulfilling critical social roles (e.g. grandparent, scout leader): –– breakdowns in critical social settings tend to occur when environmental demands exceed their physical abilities to hear; tried and proven strategies are ineffective and key helpers (such as spouses) are not available to assist –– this scenario of high demand, low control, and poor support is a near textbook definition of psychological stress (Hogan et al. 2015) it often takes up to 15 years to act on their hearing disability (Kochkin 1999) greater stress and social anxiety (Hogan et al. 2015) anomic symptoms resulting from a loss of social identity (Hogan 2001).

Partners and carers of people with hearing disability experience reduced self-esteem, a loss of intimacy, stress and tiredness due to communicationbased conflicts and a reduced social life because their partner no longer wishes to socialise. As a group, people with hearing disability experience poorer physical health than the rest of the community. The published literature shows people with hearing disability may report:5 • • • • • • • • •

elevated risk rates for diabetes and high blood pressure (Mitchell 2002) a higher incidence of stroke (Mitchell 2002) increased rates of heart attack (Hogan et al. 2001) higher mortality rates, especially among men (Appollonio et al. 1996) higher use of prescribed medications (Wilson et al. 1992) elevated rates of all cause morbidity (Appollonio et al. 1996) reduced function in activities of daily living (Wilson et al. 1992) greater reliance on home support services (Wilson et al. 1992) overall poorer physical and mental health-related quality of life, particularly among women (Wilson et al. 1992).

5  These findings do control for age effects. 28

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The literature (Hogan et al. 2009; Wilson et al. 1992) has also shown that: • people with severe impairment are three times more likely to see their

doctor than members of the general population

• people with moderate to severe hearing impairment are 15 times more

• • • •

•

likely to need assistance in activities of daily living and up to seven times more likely to require assistance in the home a relationship exists between self-reported hearing-related social participation difficulties and reduced health-related quality of life a threshold is present between increasing communication difficulties (due to under managed hearing) and health, even when using hearing aids a threshold effect exists with increasing communication difficulties (due to hearing disability) and health-related quality of life when compared with the population, people with hearing disability have three additional health conditions with 53 per cent reporting at least one health condition – the most prevalent health conditions were other long term conditions such as arthritis, asthma, heart disease, Alzheimer’s disease, dementia people with hearing disability rated the experience of difference as the most restrictive condition that they experience after chronic pain and restriction in physical activity.

Socio-economic Impacts6

In this section we report on the research on social and economic impacts of hearing disability. Education and Employment Outcomes

People with hearing disability have poorer educational outcomes. They are over-represented among those who leave school by year 8 or year 9 and underrepresented among those who have completed a year 12 education or a university degree. While they were over-represented in intermediate production and transport jobs they were underrepresented across a variety of skilled areas of employment including professional jobs such as in management and commence, food and hospitality, associate professionals, advanced clerical and services, intermediate clerical, sales and services and elementary clerical, sales and services (Hogan et al. 2012a). Overall, people with hearing disability were less likely to be found in highly-skilled jobs and were over-represented among low income-earners. 6  This section provides a summary of primary research undertaken by (Hogan 2012). 29

HEARiNG IMPAiRMENT AND HEARiNG DisABiLiTY

The data shows that even though this cohort is socially autonomous and wants to work, they are under-represented in both full and part-time work. Their experience at work is one of stress and isolation. Approximately 40 per cent reported that their hearing had no impact at all on the capacity to communicate at work. Nonetheless, compared to other Australians, the cohort reports that their jobs are less secure and they are more worried about future employment security than other Australians. The work they are assigned to tends to be less challenging work; people report that their skills are under-utilised and that they are often left to work alone. People with hearing disability experience difficulties achieving equity in the workplace, noting that their employers and co-workers repeatedly failing to accommodate reasonable communication needs. Unsurprisingly, people leave the workforce early because of a lack of support and in turn report an increased rate of non-participation rate in employment of between 11.3 per cent and 16.6 per cent (Hogan et al. 2012a). Having an additional illness or disability increases the likelihood that people with hearing disability will be outside the workforce. People with hearing disability and a second disability (e.g. mental illness) were 1.5 times were likely to not be in the work force than were other people with hearing disability (Hogan et al. 2012a). Access Economics (2006) reported that hearing disability costs the Australian community 1.4 per cent of gross national product each year in lost productivity with the bulk of these costs being caused by reduced participation in the workforce. A net impact of being outside the workforce is poverty, evidenced by people with hearing disability reporting greater troubles paying specific bills when compared with the broader population (Hogan et al. 2012a). Social Capital

A key aspect of social inclusion and wellbeing is social capital. Social capital is concerned with one’s access to support and connectivity in the community. The research shows that across a wide range of social indicators, people with hearing disability fare more poorly than other Australians. We review each of these indicators in turn. Personal Autonomy

Personal autonomy is concerned with one’s capacity to face challenges and solve problems. People with hearing disability report that compared to other Australians they: 30

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• have a reduced capacity to solve problems or change things which are of

concern to them

• more frequently experiencing feelings of helplessness • have a reduced capacity to take on challenges into the future • have less control over their lives (Hogan 2012a). Community Participation

Compared to other members of the population, people with hearing disability more commonly talk with their neighbours, attend church services and communicate with politicians. By contrast, they are less commonly involved in group events (for example, fetes, political activities, community activities) and more complex social interactions such as participating in complex discussions, or social activities with friends (Hogan 2012a). Social Cohesion

Compared to other members of the population, people with hearing disability report on average higher levels of trust and are more likely to find people to be reliable and honest. Nonetheless they are not naïve to the possibility that people may try and take advantage of them if the opportunity arose. They do however report poorer outcomes on all indicators of social cohesion. Reviewing the literature it can be see that two primary problems are experienced: • being more socially isolated • having less personal support (Hogan 2012a). A Need for Concerted Social Action

We note that there is nothing about changes to the functioning of the auditory process, in itself, that would cause these physical, psychosocial or socioeconomic changes in wellbeing of people with hearing disability. Conceptually we propose that it is the stressors related to a fear of being stigmatised and/or the stressors resulting from conflicts and disadvantage resulting from phonocentric communicative practices that contribute to poor health and psychosocial outcomes. That is, the health and wellbeing of people with hearing disability is socially determined. Moreover, similar to the women’s movement in the 1970s, we are concerned that the social conflict that arises because of a clash in communicative cultures is pathologised and that people with hearing disability are blamed for these outcomes; they are marginalised and expected to change. 31

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On the basis of the data summarised in this chapter, we would also contend that a process of (unconscious) bias is at play in society towards people with hearing disability. There is nothing inherent in hearing disability that prevents either learning or communication – it is simply a question of mode of communication. Yet despite this fact, this array of outcomes exists. As one looks back over almost 80 years of hearing services in western countries, policy makers, providers and health insurers have privileged one model of intervention – the provision of hearing aids and similar devices. On the basis of such as sustained approach to hearing services one has to conclude that a device-centric model is assumed to be necessary and sufficient to meet the participative needs of people with hearing disability. The evidence presented in this chapter provides support for a thesis which argues that this is not the case. Few readers could be happy with the social position of this cohort, as it is laid down in this social profile – the experience of inequality readily resonates with people concerned with the broader welfare of their citizens. And it is the place of social policy to take up such questions and concerns about the welfare of citizens within society and so it is to this question that we now turn. Notably this chapter highlights the fact that there is no single group of people who experience hearing disability. This profile enables the social position of people living with hearing disability to be seen and in consequence, it brings into stark reality the marginalisation of people with hearing disability and its impact on the wellbeing of people so affected. These impacts include poorer educational outcomes, employment opportunities, social relationships, physical health and social standing.

32

Chapter 2

Stigma and its Consequences for Social Identity1 Anthony Hogan, Katherine J. Reynolds, Isabel Latz and Léan O’Brien

Introduction

Humans are social beings and as such they do not experience hearing-related communication problems in a social vacuum (Hogan 2001). Notably, hearingrelated communication problems typically result in the stigmatisation of the person with hearing disability (Gagné et al. 2011; Hallberg and Carlsson 1991; Hetu 1996). As Giddens (1984) observes, stigma arises when the individual is deemed to be socially incompetent, in this case, because they cannot follow the very simple social rules of speaking, listening, and responding appropriately. People with hearing disability commonly seek to manage stigma by avoiding practices and behaviours that would marginalise or delegitimise them. With an ageing population, an increasing number of people have to navigate the transition from hearing to hearing disability. This transition has implications for people’s group membership, by either continuing to psychologically identify with the ‘hearing group’, or with the stigmatised and devalued group of ‘those with hearing disability’. As these two groups have different statuses in society, they raise questions about the physical and psychological implications of transitioning (or resisting transition) ‘downwards’ in the status hierarchy. For people with hearing disability, the choice often seems to be either to accept stigmatisation, or continue to ‘pass’ as hearing, thereby denying the problem and engaging in avoidance behaviours such as not seeking help for their hearing disability, and not using hearing aids or hearing tactics. Evidence increasingly suggests that identifying with the low status group, but re-imagining this identity in a positive way, fosters a sense of empowerment rather than stigmatisation. This process is particularly effective when joining with others in efforts to create a positive definition of who ‘we’ are, and 1  Parts of Chapter 3 were originally published by the American Speech-LanguageHearing Association in its Perspectives on Aural Rehabilitation and its Instrumentation, 18, 13–22, © 2011 under the title ‘Towards a social psychology of living with acquired hearing loss’. It is reproduced with permission.

HEARiNG IMPAiRMENT AND HEARiNG DisABiLiTY

challenging the ‘hearing’ group’s status position. Group-based re-definition and de-stigmatisation offers the path to a more positive social identity, social support, and opportunities for long-lasting change (Crabtree et al. 2010; Schmitt and Branscombe, 2002). Thus, with the support of one’s immediate network, using hearing aids and strategies to create better hearing environments can facilitate a strategy of ‘not just passing, but participating’ for people with hearing disability. Because much of the stigma surrounding hearing disability is connected to an inability to participate in social interaction, a proactive person with hearing disability can avoid the worst effects of stigma. Through elaborating these points, this chapter addresses three issues. Part I introduces some contextual material which demonstrates that people with hearing disability are stigmatised, and have been for a very long time. Part II takes up an unresolved question in the literature, that of hearing and mental health. We approach this by examining Rutman’s (1989) original thesis that indicators of mental ill-health commonly found in psychological instruments, when applied in the context of hearing disability, actually measure factors such as irritability, fatigue, and nervousness. Such experiences may reflect genuine and expected aspects of the experience of living with hearing disability rather than mental illness. We then review quantitative research on the prevalence of hearing and mental health. Notably our review of this literature supports Rutman’s (1989) original position. Taking into account the findings of this analysis, we proceed to first consider why the experience of living with hearing disability may be further marginalised by associating it with another, if not more, stigmatising condition. Part III then extends this contextualisation, by considering the implications of stigmatisation on wellbeing through the eyes of social psychology, and by using notions of social identity. Part I: Stigma, Marginalisation, and Stereotyping (T)he central feature of the stigmatised individual’s situation in life … is a question of what is often, if vaguely, called ‘acceptance’ (Goffman 1963, p. 19).

The experience of living with hearing disability has carried a social stigma across millennia. In ancient Greece, for example, deafness represented a curse, an absence of intelligence and an inability to participate in community life (Rose 2007). Throughout medieval times the inability to understand or express speech meant that an individual was not a person in law, and that one was not allowed to receive the sacraments of the Church, which constituted one of the primary elements of full participation in community life at that time (Lane 1984). The stigmatisation of hearing impairment and disability are not just unique to the history of Western cultures or religion. Miles (1984, p. 275) points out 34

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that in rural Asian communities ‘a family may conceal serious hearing loss in order to avoid the stigma of disability, which in many areas is regarded as a punishment for parental sins … [d]isability is associated with the sins of the disabled person in a previous incarnation’. Further, in Australia, Westbrook et al. (1994) undertook a study to investigate how people from different ethnic backgrounds explained the occurrence of a disability such as hearing. Importantly they found that sinfulness and loss of karma were still seen as significant contributing factors to hearing disability in some cultures. Goffman (1963, p. 12) argues that our expectations of social interaction are linked with notions of social status and that when a person does not behave according to expectations ‘(H)e is thus reduced in our minds from a whole and usual person to a tainted, discounted one’. It is this tainting or discounting of the individual that gives rise to the concept of stigma – ‘… a societal reaction that ‘spoils’ normal identity’ (Williams 1987, p. 139). The person living with hearing disability quickly becomes aware of the negative attitudes that can arise when they do not behave in line with community expectations. For example, a lip-reading class was asked to list some of the labels they were aware were used to describe people with hearing disability. Their responses included: deaf, heedless, snobbish, inattentive, stupid, idiot, not with it, dumb, ignorant, useless, retarded, boring, arrogant, stubborn, slow, vague, and psycho. A similar group at the same lip-reading club, twenty years later, reported the psychosocial consequences of these stereotypes: ‘I’m a nuisance, I’m hard to include, I don’t matter, I don’t fit in, I feel depressed, I feel isolated, I’m difficult, I feel less of a person, I am invisible, I feel left out’. Noticeably, many of these pejorative labels refer to an inability to participate in society, such that even tacit exclusion by fully hearing people may be experienced as stigmatising. The labels offered by respondents in the lip reading group may be extreme, and these respondents may have quite specific experiences of hearing disability than others on average. However, the sociology of the breach (Akram and Hogan 2015) takes the view that events that occur at the margins of society can be used to better understand events in the mainstream. Some people with hearing disability may more intensely experience the kinds of stigmatisation noted above, but we argue that all people with hearing disability experience such events, if only to a lesser degree. Moreover, the latter group is in a position to observe what happens to people with more intensive experiences of difference and can seek to avoid such outcomes for themselves. A fear of being stigmatised relates to the way a person may ‘fit in’ or adjust to society’s demands. As such, the concept of ‘fitting in’ needs to be seen as a structuring principle (Giddens 1984) that influences all relationships at an individual level, whilst also having a direct impact on the person’s general social position as a person who now has a physical impairment. The person’s ‘fit’ 35

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influences all other aspects of their lives in society, particularly with regard to the experiences of stress, coping, competence, self-direction, relatedness to others, and self-esteem. Stigma is associated with a fear of marginalisation (Hetu and Getty 1991) and this fear motivates the individual to be reluctant to acknowledge their hearing disability and to conceal or deny it. Thus, fear of marginalisation leads to high levels of stress as the person becomes evervigilant to hide their disability. Stigmatisation impacts on the predictability of social settings and therein destabilises one’s sense of social identity (Akram and Hogan 2015). It has a cascading effect on our everyday sense of security (our sense of OK-ness) (Giddens 1991) which stems from the taken-for-grantedness of routine daily interactions. This sense of security can be understood with regards to two pivotal factors associated with identity, these being coherency and continuity (Warren 1988). With regards to coherency Warren (1988) observes that: (I)ndividuals are situated in society insofar as the dominant form of social consciousness permits a self-identity corresponding to social experience. But where the dominant culture becomes illegitimate, and no longer provides a vicarious feeling of selfhood, individuals are thrown into a state of extreme and helpless isolation, losing their sense of direction and selfhood (Warren 1988, p. 45).

With regards to continuity Warren observes that ‘we learn to regard ourselves as originators of causal sequences. As such, experiences of agent unity reflect an underlying continuity of worldly practices and achievements that we learn to associate with “I”’ (1988, p. 115). In other words, (i) if there is resonance between lived experience and how one perceives life to be and (ii) I can maintain a continuity of my life story (past, present and looking into the future) the legitimacy of who I am does not come into question. People with hearing disability however, frequently experience a disconnect between how they have been used to living and current experience, such that future continuity within one’s existing social position seems at risk. Most people with hearing disability are born into and acculturated within a society where taken-for-granted interactions pivot off hearing and speech. Unproblematic hearing and speech underpin the routine of everyday social activity and permit the development of a social identity which is centred on this form of lived experience; it is part and parcel of how we see and understand ourselves in relation to others. Life makes sense and can be described as follows: I understand how I will go about interacting with others, now and in the future, and I do not need to think much, if anything about it. As such who I am makes sense to me as does what I do and who I do it with. My way of living out life 36

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fits in with my taken-for-granted assumptions about everyday life and I can see a future for myself.

These aspects of predictability are especially salient for people with hearing disability– feeling confident that they can manage themselves and others in on going social interactions in a positive and enduring manner. However, and for whatever reason, hearing begins to fail, typically slowly, with the experience of communication breakdown being situation specific and episodic. The rules of the taken-for-granted game of interactions centre on fluid hearing and speech. When these dynamics begin to become problematic, the extent to which one can have their participative needs spontaneously catered for, also becomes problematic. Typically, most people will have trouble participating in communication when the environment is full of background noise. Warren (1988) argues that in this kind of situation the individuals sense of self is ruptured to some extent. The taken-for-granted basis that underpins everyday interactions can no longer be taken-for-granted as much as it once was. It becomes difficult to make sense of why relations are going awry or as to why social settings that were once a source of pleasure, are now a source of stress because the predictability of the social has been jeopardised. For Giddens (1984) a: sense of trust in the continuity of the object-world and in the fabric of social activity … depends upon specific connections between the individual agent and the social contexts through which that agent moves in the course of day-to-day life … routine is integral both to the continuity of the personality of the agent, as he or she moves along the paths of daily activities (Giddens 1984, p. 60).

As such Giddens (1984) saw a link between the predictability of the social and the stability of identity. He saw the taken-for-granted being problematised for social identity when the ‘accustomed daily life are drastically undermined or shattered’ (Giddens 1984, p. 60). Extending Erickson’s work, Gidden’s (1984) argued that social predictability resulted in social autonomy and enhanced the capacity for social initiative. By contrast, a reduction in social predictability resulted in self-doubt, and in this case, the opening of the self to being embarrassed (ashamed of the self) when one (felt they) could not fulfil expectations about social interactions centred on hearing (see Akram and Hogan 2015 for further development of this discussion). In his later work Giddens (1991) argued that the loss of predictability arising from within problematised social situations resulted in a loss of self-confidence and a blurring of identity. No longer being sure how to behave (or that one’s body could behave in certain ways) led to a reduction in self-confidence. This destabilises identity since the sense of self often exists in the context of who one is in relation to others 37

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and idealised notions of who one is or ought to be (Jung 1983). Predictability is then inherently linked into a performative experience of trust in the social where social identity is based on a person being someone who does certain things, with certain groups of people, in particular ways, in particular settings to particular ends. When an individual is no longer able to fulfil these roles, their sense of self within such interactions is threatened. One becomes less sure of everything. As Jung remarked, once fear has taken hold, and avoidance behaviours set in, one engages in a negative and downward spiral that can only ever really be overcome by confronting the fears themselves: The moment of an outbreak of neurosis is not just a matter of chance; as a rule it is most critical. It is usually the moment when a new psychological adjustment, that is, a new adaptation, is demanded (Jung 1983, p. 49, emphasis in the original).

For Giddens (1991, pp. 56 and 66) ‘routine control of the body is integral to the very nature both of agency and of being accepted by others as competent’ resulting as it does in ‘confidence in the integrity and value of the narrative of self-identity’. Giddens further argues that social competence and resulting self-confidence sit in opposition to shame and its associated fear. Giddens (1991) and Goffman (1963) both hold that the threat of a problematised social encounter poses a crisis in identity because the person is confronted with a struggle between cultural pride or personalised shame. A change in one’s capacity to socially engage disrupts the narrative of personal identity centred on coherency and continuity. From the perspective of the social model of disability, coherency and continuity are problematised because the construction of identity is premised on able-bodied people’s notions of the limited ways in which a body can be used. Oliver (1990) aptly observes that physical difference becomes the basis on which oppressive discourses can be justified and which can be used to explain away issues of difference. The interpretation of outcomes in part centres on the lens through which the specific situations are interpreted such as the biomechanical model of the body versus the social model of disability. The bio-mechanical model of the body has been developed over several centuries and stemmed from pathology-based medicine that located disease processes within certain deficient organs or body systems (see Foucault 1976). The logic follows that disease, illness and/or disability could be managed by simply identifying and repairing or replacing the deficient organ. The biomechanical model of the body also became associated with the tragedy model of disability (Finklestien 1980). The tragedy model depicted the onset of disability as literally a terrible thing that had happened to a person. It was a state to be avoided and where possible, overcome or eliminated. 38

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The social model of disability (Finkelstein 1980; Oliver 1993) understands disability as a normal part of everyday life, not something to be overcome, but to be integrated into the flow of everyday activities. The difficulty identified under the social model of disability is that society has structured itself around assumptions of able-bodiment which encompasses certain assumptions about how people will participate in society. While the medical model seeks to fix up break downs in the body, the social model seeks to rectify breakdowns in the structuring of social arrangements. A significant amount of the discussion on hearing disability is interestingly enough caught up around the issue of hearing and mental health. There is a literature that proposes that degrees of psychological distress and reduced quality of life are associated with living with hearing disability (see for example Begg et al. 2008; Chia et al. 2007; Eriksson-Mangold and Carlsson 1991; Espmark et al. 2002; Hogan et al. 2009; Hogan, Reynolds and Byrne 2013; Tambs 2004; Thomas 1988). In addition, the literature notes that stress, anxiety, loss of security, depression, loneliness, low self-confidence, shame and anger are experiences commonly associated with living with hearing disability (see for example Andersson et al. 1995; Borg et al. 2002; Danermark and Gellerstedt 2004; Dye and Peak 1983; Eriksson-Mangold and Carlsson 1991; Hetu 1996; Hetu, Jones and Getty 1993; Kent 2003; Lindley and Lindley 2009; Monzani et al. 2008; Saunders and Griest 2009; Scherer and Frisina 1998). Indeed numerous studies reported adverse psychosocial effects of hearing disability, including communication difficulties (Borg, Danermar and Borg 2002; Dalton et al. 2003; Espmark et al. 2002; Hetu, Jones and Getty 1993; Hogan et al. 2009; Saunders and Griest 2009), stigmatisation (Dye and Peak 1983; Hetu 1996; Lindley and Lindley 2009) and a loss of confidence (Borg, Danermar and Borg 2002; Hetu, Jones and Getty 1993; Lindley and Lindley 2009; Saunders and Griest 2009; Wallhagen et al. 2004). Furthermore, hearing disability was frequently associated with a negative impact on individuals’ social life, such as a disruption of their social role/identity (Donaldson, Worrall and Hickson 2004; Hetu, Jones and Getty 1993) withdrawal from social activities (Donaldson, Worrall and Hickson 2004; Helvik, Jacobsen and Hallberg 2006; Hetu, Jones and Getty 1993) or perceived stress in social encounters (Eriksson-Mangold and Carlsson 1991; Hetu, Jones and Getty 1993). This genre of work fits well with themes raised by people with hearing disability in their submission to the Senate of the Australian Government (2010) which in turn released a report on its inquiry on Hearing and Health. The report identified psychological aspects of living with hearing disability as a key area of social concern. While numerous studies, such as those noted above, have focused on the emotional experiences of individuals with hearing disability, few studies have investigated the nature of these distressing emotions and whether a 39

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systemic association exists between hearing disability and mental health. As a consequence, information on what can be done to address the psychological impacts of hearing disability appears fragmentary in the literature, with flow-on consequences for models of community service delivery. To address this gap in the literature we critically examined the literature on hearing disability and mental health to test Rutman’s (1989) thesis. This examination commences with a review of the quantitative research papers which examine the prevalence of hearing and mental health. Part II: Further Marginalising Hearing by Linking it to Poor Mental Health Disciplinary practices create the divisions healthy/ill, sane/mad, legal/ delinquent, which, by virtue of their authoritative status, can be used as effective means of normalization and control. They may involve the literal dividing off of segments of the population through incarceration or institutionalisation. Usually the divisions are experienced in the society at large in more subtle ways, such as in the practice of labelling one another as different or abnormal (Sawicki 1991, p. 22).

Following a review of the literature we developed Table 2.1 which provides an overview of studies on hearing and mental health. To be included in this overview, such studies must have included quantitative or a combination of quantitative and qualitative measurement tools to reveal individuals’ mental health, such as the Short Form 36 (SF-36) or Hearing Handicap Inventory for Adults (HHIA). Literature reviews and opinion pieces were excluded from the analysis. Some studies have used a combination of instruments (Andersson et al. 1995), whereas some smallscale research projects have included qualitative methods (Dye and Peak 1983). Table 2.1

Methods of studies investigating hearing impairment and mental health

Author (year) Andersson et al. (1995)

Participant characteristics

Outcomes

Assessment of well-being/mental health

N=68 Mean age=69.9 years

Psychological problems of hearing disability and coping strategies

Hearing Coping Assessment, Life Orientation test, Beck Depression Inventory, Göteborg Quality of Life

40

STiGMA AND iTs cONsEQUENcEs FOR sOciAL iDENTiTY Andersson and Hägnebo (2003)

N=94 Age: 18–94 years

Hearing impairment, coping strategies and anxiety sensitivity

Ways of Coping Questionnaire, Anxiety Sensitivity Index

N=16 male veterans Age: 60–75 years

Association between personality type and perceived hearing aid benefits

Keirsey 4 type sorter

N=2431 Age: 49+ years

Hearing impairment and health-related quality of life

Short Form 36 (SF-36)

Dalton et al. (2003)

N=2688 Age: 53–97 years

The impact of hearing disability on quality of life in older adults

SF-36

Danermark and Gellerstedt (2004)

N=445 Age: 20–64 years

Psychosocial work environment, hearing impairment and health

SF-36

Dye and Peak (1983)

N=58 male veterans Age: 45–83 years

Psychological functioning in older adults with hearing impairment

Qualitative interviews

Eriksson-Mangold and Carlsson (1991)

N=60 Age: 55–74 years

Psychological and somatic distress in relation to perceived hearing disability

Hearing Measurement Scale, Global Severity Index, positive syndrome total, indepth interview by psychologist

Gomez and Madey (2001)

N=61 Age: 61–85 years

Coping with hearing impairment

Overall use of adaptive and maladaptive strategies from the Communication Profile for the Hearing Impaired (CPHI)

N=53 (all male) Mean age=54.8 years (SD=3.4)

Coping with noiseinduced hearing impairment

Hearing Disability and Handicap Scale (HDHS)

N=65 (all female) Age: 32–86 years

Quality of life among women with noise-induced hearing impairment

Communication Strategies Scale (CSS), the HDHS, Psychological General Well-being Scale (PGWB)

Barry and McCarthy (2001)

Chia et al. (2007)

Hallberg and Barrenäs (1995) Hallberg, Passe and Jansson (1999)

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Table 2.1

Concluded

Author (year)

Participant characteristics

Outcomes

Assessment of well-being/mental health

Hallberg, Hallberg and Kramer (2008)

N=79 Age: 48–92 years

Self-reported hearing difficulties, communication strategies and psychological general well-being

The Amsterdam Inventory for Auditory Disability and Handicap (AIADH)

Helvik, Jacobsen and Hallberg (2006)

N=343 Age: 20+ years

Psychological wellbeing of adults with hearing impairment

Sense of Humour Questionnaire, CSS, HDHS

Hogan et al. (2009)

N= 654,113 Age: 55+ years

Health effects (mental and physical) of hearing impairment

SF-12

Espmark et al. (2002)

N=154 Age: 70–91 years

Hearing impairment and psychosocial consequences

Interviews and selfreported measures

Mo, Lindbaek and Harris (2005)

N=27 Age: 28–82 years

Cochlear implants and quality of life

SF-36

N=169 (73 cases/96 controls), working adults Age: 18–65 years

Psychological profile and social behaviour of working adults with mild to moderate hearing impairment

SF-36

Tambs (2004)

N=50,398 Age: 20–101 years

Effects of hearing impairment on levels of anxiety, depression, self-esteem and subjective well-being

SF-36

Scherer and Frisina (1998)

N=40 Age: 61–81 years

Marginal hearing impairment and subjective well-being

Assistive Technology Device Predisposition Assessment (ATDPA), Profile of Hearing Aid Performance (PHAP)

Monzani et al. (2008)

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At a population level studies report an overall reduction in health-related quality of life (HRQoL) associated with hearing disability where the loss of HRQoL is attributable to the mental health domain (Chia et al. 2007; ErikssonMangold and Carlsson 1991; Espmark et al. 2002; Hogan et al. 2009; Tambs 2004). Typically such studies base their conclusions on data drawn from measures such as the SF-36 (Dalton et al. 2003; Monzani et al. 2008; Ware et al. 1993). The large amount of psychosocial and emotional factors reported to be associated with reduced wellbeing in people with hearing impairment are summarised in Table 2.2. Table 2.2

Psychological factors and negative emotions due to hearing impairment based on findings from the literature review

Psychosocial factors associated with lower wellbeing in adults with hearing disability

Negative emotions associated with hearing impairment

Communication difficulties

Fear/Nervousness/Stress

Stigmatisation

Depression/Powerlessness

Disruption of social role and social identity

Anger/Frustration

Withdrawal from social behaviour

Shame

Perceived stress in social encounters

Loneliness/socially isolated

Perceived lack of social support

Denial/minimisation of problem/avoidance

Reduction of interpersonal interaction

Fatigue

Loss of confidence/self-esteem

Discussion and Criticism of Existing Studies

From the findings of our critical review, we can conclude that several studies show links between living with hearing disability and adverse consequences on psychosocial wellbeing. In drawing this conclusion we note two distinct issues that add to understanding this conclusion. First, it is quite possible that conclusions about the mental wellbeing of people with hearing disability which draw on instruments such as the SF-36 may be misleading. The SF-36 uses items about fatigue, lacking energy and conflict in relationships as indicators of mental illness. However such outcomes are commonly experienced by people with hearing disability in problematic communication environments, such as where background noise is present, and are not necessarily indicative of mental health problems. Moreover, the way hearing disability is constructed in epidemiological studies of mental health, also influences the result. Wilson et al. (1992), for example, 43

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utilised an audiological (physically measured) approach to hearing disability and reported no significant differences in indicators of mental health between samples of people with and without measured hearing impairment. This was not surprising as the existing literature has already demonstrated that it is the experience of communication disability that is associated with interpersonal difficulties rather than measured hearing impairment (Lutman et al. 1987). In contrast, Hogan et al. (2009) used a model of self-reported communication difficulties and found significant differences between populations on their mental health scores. Notably, poorer HRQoL in the mental health domain was associated with increased difficulties communicating in social settings. Taking this outcome in the context of the first critique though, one could equally conclude that in difficult communication settings (where the needs of people with hearing disability are not accommodated) conflict may arise and the person with hearing disability may feel tired or fatigued as a result of having to concentrate for extended periods of time. Such a conclusion would be consistent with our second insight that there was a lack of any substantive literature consistently reporting an association between hearing and clinically defined mental health outcomes. What we did find however, was a majority of studies with a focus on the adverse socio-psychological consequences that are related to the experience of living with hearing disability, such as stigmatisation, communication difficulties, social withdrawal and so on. These critiques of the existing work are not to suggest that the interactive problems associated with living with hearing disability are not stressful or that the longer term effects of stress do not impact on psychosocial wellbeing. Rather, our concern is that much of the existing literature does not make a clear distinction between the experiences of negative emotions associated with hearing-related social communication difficulties and measurably diminished mental health outcomes. Moreover, by not contextualising the experience of distress within the broader context of the social relations which cause them, the experience of living with hearing disability is pathologised and the service models which result focus on overcoming hearing problems through therapy rather than social change. Branscombe et al. (2011) stress the link between perceived stigmatisation and adverse consequences on psychological wellbeing and subsequent attempts of the individual to avoid stigmatisation. The authors note that following individualistic coping strategies as opposed to collective coping strategies can have negative implications for individuals’ health in itself. Individualistic coping strategies involve hiding the trait that is associated with stigmatisation and deferral from the stigmatised group, which in turn increases a sense of social isolation, lowered self-esteem, or experiences of guilt and shame; all of which impair individuals’ psychological health. It seems that the wellbeing of individuals 44

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with hearing disability is affected through these pathways, resulting in fatigue, interpersonal conflict or emotional distress. We observe in the literature that stigma is consistently identified in research papers as a core social issue impacting on people living with hearing disability (Gagné et al. 2009; Hetu 1996; Hogan 2001). Stigma impacts on the individual’s social identity (Hogan et al. 2011) and their capacity to access services in the absence of further psychological harm. The literature notes that it is the fear of stigmatisation which results in the avoidance of recognising or accepting one’s hearing disability (Hallberg and Barrenäs 1995; Hetu 1996; Hogan et al. 2009; Kent 2003). A reluctance to acknowledge hearing disability is closely linked with a misperception of the effects of hearing impairment in everyday relationships and both are associated with a gradual decline in social activities (Hetu et al. 1993). In this section we have highlighted significant gaps in the existing literature on hearing disability and mental health, particularly with regards to the extent to which it adequately depicts the social drama of living with hearing disability. We found that the lived experience of hearing disability is pathologised; attributed to the individual. This is not to say that the contestation of lived experience as a person with hearing disability is not stressful or concerning. To this end, in the next part of this chapter, we will bring together several themes which to date have been handled separately. We commenced this section of the chapter with a critical review of the literature on hearing and mental health. We then drew out the fact that there is little empirical evidence which supports the idea that hearing is strongly associated with clinical definitions of mental illness. At the same time, there is much in the literature which suggests that negotiating oral communication from the disadvantaged position of having hearing disability is stressful and may be associated with social conflict. We noted earlier how social identity is related to group membership and a fear of losing one’s social connectivity in group membership. We now want to link this latter insight with Hogan’s (2001) early work on the psychosocial effects of living with hearing disability, giving particular emphasis as to how participation in problematic oral communication can result in the destabilisation of identity, with subsequent impacts on wellbeing. Summarising these issues we argue that the extent to which social life becomes or retains its predictability and where one can be clear about who s/he is and the roles to be played out, one can feel competent to interact with a sense of worth and that one can be a part of things. Then, as a person who is happy with his/her lot in life one can confidently go about his/her business, moving on with the goals s/he has established for their life with a sense of wholeness and wellbeing. 45

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And so a picture begins to emerge as to the parameters that may underpin the wellbeing of people with hearing disability. Confronted with carrying out everyday interactions as they think they should be able to, the individual experiences contested identity which results from a disconnect between how they think they ought to be able to interact in the social and how they actually do. These experiences of contestation involve, to differing degrees, feelings of fear, guilt, anxiety, worry, sadness, grief, anger, frustration, distrust and a loss of intimacy. These then are aspects of the psychosocial experience of coming to live with hearing disability as described by people with hearing disability themselves. Part III: Beyond Stigma: Social Identity and Wellbeing

Part I has identified that stigma is a significant problem for people with hearing disability, and introduced the idea that the fear people have of stigmatisation motivates them to avoid managing their hearing disability. Part III now considers the stigmatisation process through the lens of social psychology, and elaborates on how interventions for dealing with hearing disability must be designed. The association of stigmatisation with hearing disability-related behaviours provides evidence that hearing culture exists as a social reality or social fact (see defined in Chapter 1). Social facts often form the fabric of taken-for-granted daily cultural practices that are unique to specific groups at certain times and places. In the context of hearing society there is strong consensus that certain ways of interacting are regarded as normal. In this sense, the taken-forgranted rules and values of the hearing world constitute social facts. Haslam (2004) and Haslam et al. (1997, 2003) point out that group processes and associated consensus not only define social facts, but also shape perception and behaviour. A person’s sense of belonging to groups is defined at some level by their interaction practices. When a person has a hearing disability, the normal practices of the group are much more difficult to enact. This difficulty interferes with the expectations of interpersonal social interaction and places these group members at risk of being resisted, excluded, and marginalised. At present, it is not socially acceptable to disrupt interactions through the use of commonly supported hearing tactics that ask the communication partner to change their taken-for-granted way of speaking and listening. Thus the dominant social practice of hearing interactions marginalises people with a hearing disability. More than a simple external sense of coercion and censure, this marginalisation has flow-on effects for people’s group memberships in society and their social position. Flow-on effects occur because, at a basic psychological level, group members will be more marginal the less they embody the accepted norms and practices that define the group. Consequently those with hearing disability often struggle to maintain their position in social groups. 46

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The issues surrounding social position are perhaps more pronounced for those that have held full-fledged membership of the ‘hearing group’ and now find this group membership being threatened due to hearing disability. Hence, identity dynamics concerning how people see themselves become important when dealing with the onset of hearing disability, especially later in life. Haslam (2004) summarising work on social identity theory (Tajfel and Turner 1979) and self-categorisation theory (e.g., Turner et al. 1994) outlines the concept of social and personal identities: … social identity is the individual’s knowledge that he [or she] belongs to certain social groups together with some emotional and value significance to him [or her] of this group membership … social identity is part of a person’s sense of ‘who they are’, associated with any internalized group membership. This can be distinguished from the notion of personal identity, which refers to self-knowledge that derives from the individual’s unique attributes (concerning physical appearance, intellectual qualities and idiosyncratic tastes) (Haslam 2004, p. 20).

People who experience hearing disability and who have previously been members of the hearing group will have internalised (consciously or otherwise) a sense of group membership with the whole of hearing society. As a result their hearing disability leads them to experience identity threat. Their past behaviour as a member of the hearing group has involved taken-for-granted daily cultural practices that reinforced the centrality of hearing in their lives. Hearing has been a central part of how they and others have collectively interacted in all the intimate, professional, and casual subgroupings that exist within their hearing community, and these hearing-based interactions are part of how they have shown that they belong. Consequently, identification with the hearing group is positive in its emotion and strongly valued. Conversely, people with hearing impairment often strongly reject associations between themselves and some kind of ‘hearing disability group’. The hearing disability group is perceived to be a small stigmatised group who cannot participate in the taken-for-granted collective behaviours of ‘normal’ social life. Because such a group is readily devalued, identifying oneself in terms of a hearing disability group has emotionally negative connotations. The focus is instead on the hearing group as the former and desired ‘in-group’; it is the group they were in, and still want to be in. These insights thus provide a very strong conceptual and practical basis for understanding why people living with hearing disability strongly identify with hearing culture, and routinely refuse, within the clinical as well as the social setting, to implement behavioural changes that would identify themselves as having a hearing disability. While representing oneself as having a hearing 47

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disability may resolve the communication problems, it also presents the person as no longer sharing the group membership of the hearing community. It is understandable that people with hearing disability do not want others to reclassify them as belonging to a stigmatised group, and also that they do not want to internalise this stigmatised group as a social identity that defines who they are. The irony is that stigma attached to hearing disability is rooted in a diminished ease of communication, but communication can only be improved by acknowledging and managing hearing disability in collaboration with other people who are partners to the interaction. Moving to a state where hearing disability is encompassed in social interactions involves redefining and de-stigmatising what it means to have impaired hearing. Without negative connotations, the hearing disability group becomes one worth identifying with, because the technological and social strategies associated with this group support inclusive means of communication and therefore allow its members to participate in broader society, rather than simply ‘passing’. Realistically, the development of inclusive communicative environments will result from individuals forging a change process. At the individual level several identity change processes are necessary before such a positive transition can take place, including challenging the status-quo, reframing the taken-for-granted and securing adequate social support for change (see Crabtree et al. 2010; Haslam et al. 2005). This chapter has provided the reader with a theoretical background on the social psychology of living with hearing disability. This theory begins to provide the reader with insights as to why it is people respond to governance and stigma in the way that they do. It also provides a conceptual framework for understanding how it can be that the social outcomes of people with hearing disability turned out as they did and extends the initial theoretical insights on the potential negative effects of governance and stigma.

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Chapter 3

The Emergence of the Social Perspective in Hearing Services Anthony Hogan

Introduction

Despite the fact that people with hearing disability have been stigmatised across millennia, the implications of such a finding have not made their way into the design of many hearing services. Despite this systemic and well-resourced resistance to change, scholars, clinicians and community based service providers from across the western world continue to grapple with the psycho-social impacts of hearing disability. It is evident to many that there is a critical social element(s) to hearing disability. But exactly what is this element? How is it to be understood, explained and justified in academic, clinical, economic and human terms? In this chapter I want to document the key contributions that I am aware of that have contributed to the step-change in the way we think about hearing services. Writing through the lens of historical sociology (Dean 1994) I do not attempt to write a chronology of events, but rather look to the watershed moments that contributed to the development of what we might refer to as a social movement in the development of hearing services. The central argument of the first part of this chapter is that the differing pieces of the social puzzle were addressed by a variety of researchers over a period of 50 years. By the late 1980s this work culminated in a critical shift in thinking that manifested itself in the development of a new conceptual framework that would underpin the design of hearing services into the future. For me this conceptual shift manifested itself in what became known as the Montreal Program (Hetu and Getty 1991) (the program was named as such by William Noble). I will contend that the critical contribution that the Montreal Program brought to the field was its capacity to frame the issues within a coherent conceptual framework that was both informed by and anticipated developments in social psychology. Moreover, the insights arising from this framework were able to be translated into a costeffective service delivery framework centred on the wellbeing of the person with hearing disability as well as significant others (see Appendix 1 for details of program costings). So I will firstly address the contributions of key contributors

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to the social movement, commencing with the work of Mark Ross (United States), William Noble (Australia) and a group from the United Kingdom, whose work was led by Lesley Jones. Key Contributions to a Social Perspective in Hearing Services

Hearing services, as we now know them, were developed in Britain and the United States in response to the needs of veterans returning from World War II, particularly those who had been exposed to artillery noise (for a more detailed documentation of these developments see Hogan et al. 2010 and Hogan 2015). The service design was based on a medico-military program where returning servicemen were ordered to attend treatment programs (Gaeth 1979). As Mark Ross (based in the United States) pointed out, the program offered to servicemen was comprehensive – a kind of audiological Camelot (Ross 1987) if you will. The service design entailed the offering of a mixture of technology, communication training and psycho-social support services. In countries such as Australia, the consumer-centred Better Hearing Australia service delivery program emerged as a provider of lip-reading teaching and social support, particularly for people with severe to profound hearing loss. Elsewhere in the world programs developed such as the Association for Deafened Adults and the SHHH movement. Several key events took place in the ensuing years: • the crisis associated with the needs of Veterans subsided • there was a worldwide the rubella epidemic. The need for a substantive

clinical response to this need meant that there were less resources available for adult services and, • hearing aid manufacturers and suppliers presented the devices of the day as a comprehensive treatment of adult hearing impairment.

Conjointly, these factors contributed to the emergence of a culture shift in hearing services such that the competency of the audiologist who sought to provide services beyond assessments and devices, came to be questioned. As Ross (1987) observed, by the late 1960s a culture had emerged in western audiology that held that an effective audiologist could attend to all the needs of a person with hearing impairment by the proper fitting of the correct hearing aid. This world view, progressed by the efforts of hearing aid companies, put audiologists under considerable pressure to steer away from the provision of other kinds of services: The drift from aural rehabilitation has been so extensive that it represents a change in the basic direction of the field … . The audiologist who voluntarily 50

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chooses the role of rehabilitation worker must be truly dedicated, for he runs the danger of being considered in competent for other functions by his peers (Rosen, 1967, cited in Ross 1997).

At the time it did not seem to matter that device-centric programs were not supported by hearing consumer groups. These groups, and advocates working with them, made various attempts to put in place an alternate client centred service program (see for example Pengilley 1975; Plant 1977; Henoch 1979, Hetu and Getty 1991; Erdman, Wark and Monanto 1994; Hogan et al. 1994; Erber 1996). Most of these programs were poorly resourced and struggled to survive without access to public funding. Since this time aural rehabilitation, as it was known, has been the poor cousin of a device-centric program. The kinds of consumer-centric service programs that had emerged would in turn struggle to survive in the ensuing 50 years. As Jones et al. (1987) were to subsequently observe, the social implications of hearing impairment were left entirely to the voluntary sector. Moreover, their review of the literature (1987, p. 57ff) demonstrated that a device-centric program became so entrenched it defined the client as the embodiment of deficit, positioned against a corporate interest whose economic interests relied on a deficit construction of the individual with impaired hearing. In short, you are the problem and we are the cure! Conceptually, the next significant shift in thinking came from a psychologist, William (Bill) Noble. His book, Assessment of Hearing Impairment (1978) represented a watershed in that it conceptualised a then notion of hearing handicap which sought to depict the social impacts of impairment: Without direct inquiry into the lives and circumstances of the people who manifest sign of impairments on these (audiological) tests, little useful knowledge is gained about the disabilities (functional hearing incapacities in the everyday world) and none whatever about the handicaps (the disadvantages of everyday lived) experienced as a consequence of impairment (Noble 1991, p. 60)

Other key contributors of the time included Stephens (1980), and in time, Gatehouse (e.g. 1999). At about the same time, Adrian Davis (also out of the United Kingdom) published his classic study on the epidemiology of hearing impairment. In so doing he paved the way for hearing to be seen as a significant issue for public policy makers and service providers, noting as he did, the large proportion of the population that was affected by impairment (Davis 1989). In time David Wilson (Wilson et al. 1992) (originally from Glasgow) would replicate Davis’ study in Australia while also documenting how other health outcomes were also associated with hearing impairment (see later in this Chapter). In particular, Wilson brought onto the policy agenda the insight that the experience of hearing impairment could reduce health-related quality of life. 51

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Another significant contribution appeared in the British work Words Apart (Jones et al. 1987). This was another scholarly publication based on quality research with people with hearing impairment. Moreover, coming from social work and psychology, these scholars brought forward some of the foundational insights that in turn would serve as the basis for the emergence of a new way of conceptualising the lived experience of hearing disability. I recall here several of their key insights: • ‘social interaction can be dominated by a sense of stigma’ (Jones et al.

•

•

• •

1987, p. 29) and a sense of social exclusion (p. 30) and the tendency to withdraw (p. 31). the ‘perception of stigma … was strongest in those conditions which threatened the taken-for-granted world of everyday interaction (citing Baxter 1976, 1987, p. 15) ‘the most significant subjective response to hearing loss was loneliness coupled with a fear of social situations. People were anxious that the inability to communicate normally would be perceived by others as indicating stupidity’ (citing Knight 1948; 1987, p. 14–15) the stress effects of communicating under such pressures has psychological impacts (citing Thomas 1984; 1987, p. 27), and the response to the resulting anxiety is considered to be maladaptive (Jones et al. 1987, p. 28).

Central to their conclusion was the need for a process or intervention that would lead to a decrease in stress, stigma and marginalisation. The book stopped short, however, of progressing to a system of intervention for either individuals, or the community, that would adequately address these issues. For that, we must turn to the work of the Canadians who both confirmed the British experience and then built on it. This paradigm shift was consolidated and systemically conceptualised by researchers Raymond Hetu and Louise Getty. Their program brought forward a new way of seeing the social dynamics of living with hearing impairment and as a result of this different understanding, set in play a different way of working with people whose experience of hearing is different to others. Unfortunately Raymond was killed in a car accident in 1995, before one of his most influential papers on stigma was published (Hetu 1996). Academic, as well as family commitments, subsequently took up a lot of Louise’s time. Nonetheless she still found time to conduct the Montréal process with groups of workers and older people. However, the process of documentation and knowledge production stalled. Over time, two independent programs of research progressed the insights developed by Hetu and Getty. In Canada Jean-Pierre Gagne and colleagues pursued research on stigma and hearing. In Australia, I in turn led a series of 52

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studies that sought to extend the application of the program to other groups of people with hearing disability while also dealing with the institutional resistance to change that was becoming increasingly evident. Like many, I took the view that aids and devices were useful but, if offered in isolation to other services, did not constitute an intervention that was sufficiently comprehensive that it would address the wellbeing needs of people living with hearing disability. Working then from a perspective seeking effective social change, my work focused on documenting the limitations of current interventions when assessed against community benchmarks concerned with the social and health needs of people with hearing disability. The second part of this chapter now examines the gradual development and consolidation of the Montreal Program. I will begin with an overview and examination of the program before proceeding to address the subsequent contributions of the Canadian and Australian work and the subsequent impacts they have had on progressing paradigm change across the world. Overview of the Montreal Program

The Montreal Program consists of three distinct strategies: 1. a recruitment strategy concerned with overcoming the initial barrier of

reluctance 2. provision of a group based problem-solving process, and 3. provision of support for individual problem-solving beyond the group process, specifically referred to as follow-up. Each of these strategies is described in turn. Recruitment

The recruitment process is based on the use of a trusted-persons model. Within such a model, a person known to and trusted by a potential program user, suggests to the person that the program may be of benefit to them and asks if they would like to receive further information about it. Anyone who accepts this initial invitation then receives the following contacts: • an initial contact by telephone is made with the person one month before

the program commences • a visit to the person and their spouse, either at their place of work or a home visit and the completion of a readiness for hearing services questionnaire four to six weeks prior to commencing the program 53

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• posting/emailing a brochure about the program to participants over a

week prior to commencement, and

• a final telephone/reminder call several days just prior to program

commencement.1

Group-based Problem Solving Process

Details of the full Montreal Program can be found in Hogan (2001). A short version of the program can also be found in Hogan (2008). The program itself involves four weekly group sessions, each consisting of 2 hours of group work. The program seeks to: • enhance hearing sensitivity and reduce hearing impairment by providing

• • • • • • •

participants with access to auditory stimulation appropriate to their communication needs enhance participants’ ability to detect speech and environmental sounds enhance participants’ hearing and listening skills improve participants’ physical health by reducing the physical/ psychological demands of deafness on the body reduce the extent of hearing handicap/disability experienced by participants. improve the partner’s physical health by reducing the physical/ psychological demands of deafness on the body reduce the extent of shared disability experienced by partners, and enhance the participants’ socio-economic position by referring clients (on a needs basis) to appropriate employment and/or other social services.

The problem solving process has specific objectives. These are: • to offer psychosocial support to enable clients to better deal with the

effects of the hearing loss • to allow the clients to understand the nature and the consequences of the problems they experience, and • to enable clients to develop skills and attitudes that will facilitate enhanced communication outcomes (Getty and Hetu 1991).

Program objectives are achieved through the use of specific exercises. These exercises aim to enable participants to: 1  This must be a personal contact and not simply an email or text. The dynamic of reluctance is often at play here with people questioning the need for or benefit of the program for themselves. 54

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• recognise the problems they are experiencing • understand the nature and impact of these difficulties, and to • develop competencies (skills, knowledge, and attitudes) to manage these.

At the end of the program participants develop a personal action plan to design to improve their hearing and listening skills. The program is delivered by a multi-disciplinary team of professionals and peer educators, who work in close collaboration with the participants during the group-work program. Group Work Follow Up

A follow-up meeting occurs approximately three months after the program. It too consists of a two hour group work session. This session operates at multiple levels at the one time. A key component of any such program is to ascertain what value, if any, participants took from the program. It identifies the positive things participants enjoyed about the program and looks for participant suggestions as to how the program could be improved. Moreover, this follow-up meeting provides an opportunity for service providers to review the extent to which participants were able to implement their personal contract that was designed to improve their hearing and listening skills. Having delivered this program many times, I have found that by three months, many people are still just getting around to taking action to address their hearing and listening skills. This dynamic reflects in part the impacts of reluctance and misperception and also simply the mere business of peoples’ lives and the time it takes to organise for change at a personal level. At this point in the process, service providers work more closely, and on an individual basis, with people to implement their change plan. The Rationale Behind the Montreal Program

Hetu and Getty’s approach emerged out of their concern that obstacles existed that prevented people with hearing impairment from seeking help. In seeking to understand the nature of such obstacles they approached their research from a population health perspective rather than from a clinical perspective. Focusing their research on workers with industrial deafness, Getty and Hetu (1991, p. 42) found that: a. ‘the effects of hearing impairment are often misperceived by the affected

workers and significant others and that the b. hearing impaired workers are reluctant to acknowledge hearing difficulties’.

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Not only were these two psycho-social dynamics – misperception and reluctance – central to preventing help seeking, it needed to be understood that they interacted with each other. Since one’s hearing often changed slowly, it was difficult to detect whether problems that arose were due to hearing impairment or other factors. One in turn would be reluctant to identify as having a hearing impairment because the experience could be so inconsistent (being able to hear in some instances and not others). Moreover, the reluctance of individuals to acknowledge hearing difficulties was also driven by fears of being stigmatised. The consequence of this interplay of psycho-social dynamics was that people attributed interpersonal communication problems to causes other than hearing impairment … they (were) generally interpreted as changes in one’s own lifestyle; and as a result of the reluctance to acknowledge the hearing difficulties, the communication problems raised by (hearing impairment) are experienced as interpersonal frictions and conflicts (Getty and Hetu 1991, p. 41).

People were either unaware of, or unwilling, to acknowledge their hearing difficulties. For Hetu (1996) a fear of stigma was central to the effective management of hearing impairment, be that at a societal, clinical or individual level. In consequence, Hetu (1996) held that people with hearing disability needed to develop skills that would enable them to more effectively manage social interactions in a positive and image enhancing manner, rather than stigmatising one. Goffman (1963, p. 31) points out that social situations will not always go well for the stigmatised person, that others will be aware of ‘the difference’ ‘since the stigmatised person is likely to be more often faced with these situations than are we, he is more likely to become adept at managing them’. Central then to the Canadian work was not just the recognition of stigma as an issue but that hearing impairment had to be addressed as an issue concerned with difference rather than deficit. Here then, the Montreal Program aligned hearing disability with minority politics. Outside a context of recognising difference and minority politics, one is left with the negative cascade of pathologising disability and concealing difference. As Rutman (1989) readily observed, if interactions for people with hearing disability do not go well and resulted in feelings of marginalisation, then the person with hearing disability was more likely to try to conceal their hearing impairment, setting up a vicious cycle of vigilance, bluffing and concealment ‘which promote marginality, since privately they are all too acutely aware of their hearing impairment’ (Rutman 1989, p. 308). By contrast, Hetu and Getty’s program is centrally concerned with enabling the person with hearing impairment to develop their skills in managing social situations whilst trying to influence the way significant others relate to the person with hearing disability. This is a significant variation from Goffman’s program (see further discussion in 56

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the next Chapter) in which the responsibility for change was on the stigmatised person. Hetu and Getty took the view that managing relationships is a two way process and that both parties need to develop their relationship management skills. The onus for better communication therefore shifts from the individual to the interaction between the individual and society. Goffman’s thesis as noted holds that (i) opportunities for stigmatisation arise when the social routine is disrupted and that (ii) stigmatised individuals develop skills in managing potentially difficult situations. The Montreal Program encompasses a number of strategies to assist people to manage such situations. First, they provide an opportunity for people to ‘normalise’ their experiences by sharing them with people who have similar experience. Second, through role plays and assertiveness training, people are given the opportunity to develop skills in difficult interactions. Third, Hetu and Getty involve significant others in the change process so that others likely to be involved in the stigmatising process have their attitudes to the social routine changed. In time other researchers (e.g. Morgan-Jones 2001 in the United Kingdom) would write about the impact of hearing impairment on family life and social networks. Education strategies aimed at the general community are utilised to influence wider society about changes in the social routine that are intended to take disruptions out of interactions. Central to the Montreal Program was the fact that it was based on a ‘changeorientated’ public health program. From the outset, Hetu and Getty understood that they were developing an approach that was intended to disrupt the way audiology was currently practised. Conceptually they argued for change and practically they sought to shift the way audiology was practised. Moreover, they saw the solution to everyday hearing difficulties as not necessarily embodied in the individual with hearing impairment. Instead they viewed the solution as addressing, on the one hand, the socially constructed ableist attitudes that disadvantaged people with hearing disability in everyday interactions. On the other hand they sought to address communicative barriers ever present in the build environment – what in time would come to be known as acoustically inaccessible places. Importantly they also sought to move away from the traditional program of hearing services wherein an individual identifies themself with a hearing disability and takes themselves off for assessment and intervention. Rather in their initial approach they foresaw the need for both the person with the hearing impairment and their significant other to participate in a change process. The spouse was involved in the process because: they themselves bear the effects of the reduced listening and communication abilities of their husbands … the spouses are likely to react positively to an offer of professional help … the spouses do not understand the nature of the impairments, their spontaneous reactions to communication difficulties are very often a source of handicap for the worker … (and since) the major effects of 57

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(hearing impairment) appear to be experienced in the family’ (Getty and Hetu, 1991, p. 45).

As such, Getty and Hetu anticipated the insights that would in turn be developed by social identity theory (see Chapter 2 for a further discussion of this issue). Engaging People in Services Amidst the Fear of Stigmatisation

In seeking to move away from a clinically oriented intervention centred on assessment and treatment program, Hetu and Getty introduced a programed approach to this work. They took the view that if fear of stigmatisation, confusion, conflict and contradiction were associated with the lived experience of hearing disability then a staged-approach to personal change was required. In turn the management of stigma, misperception and reluctance became central to the logic that underpins the Montreal Program (see Chapter 2 for an explanation of this significance from a psycho-social perspective). Because of the personal impacts of these psycho-social dynamics, Hetu and Getty (1991) theorised that people with hearing impairment were not likely to seek assistance for their hearing impairment. To this end they contended that particular care needed to be taken to ensure that those who desired assistance could access it. For Hetu, the greatest threat to accessing help was an individual’s ‘fear of being discredited as a person’ (Hetu et al. 1990) due to their hearing impairment. Hetu et al. (1990) found this fear was very common among all workers who participated in their original study. To this end, Getty and Hetu (1991) used a trusted persons program to engage people in the change process. This program involved contact with a prospective client over a month prior to the intervention, with contacts involving home visits, as assessment of psycho-social impact and follow-up letters and telephone calls. The recruitment process they put in place is very similar to the now well respected Dillman (1978) method for researching hard to reach populations. Getty and Hetu (1991) report that this process resulted in 89 per cent of persons contacted attending the program. In studying the application of this program in Australia I similarly encountered the dynamics of reluctance and misperception across a variety of populations of people with hearing impairment. In our Australian evaluation of the program (Hogan et al. 1994) I followed the same recruitment method and secured a participation rate of 85 per cent. It needs to be appreciated that this very active method of engagement and enablement is conceptually and practically quite different to a traditional medical model approach to hearing services. It will come then as little surprise that clinicians across the world were extremely resistant to taking on such a program. When, for example, this program of recruitment was first presented 58

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to the Australian Audiological Community at a meeting of its scientific group at the National Acoustic Laboratory, Chatswood (Australia), it was widely rejected as being impractical to implement. However, some 25 years later, all of the major commercial hearing aid providers in Australia now have in place extensive recruitment programs. Nonetheless, their interventions remain focused on the delivery of hearing aids rather than a holistic program of health and wellbeing. As I note in subsequent chapters, this is an outcome driven in part by models of public funding and health insurance which privilege the provision of devices over health and social outcomes. However, without an intervention which enables people to navigate the often slow process of identity change and self-evaluation (e.g. recognising how one may participate in self-stigmatising behaviours) the benefits of using devices cannot be easily realised for many people. Managing Personal Change Amidst the Fear of Stigmatisation

Just as the process of engaging people in a change process had to be approached with regard to the personal impacts of stigma, so too did any intervention. To this end the Montreal Program was designed to first of all move people through and beyond the fear of being stigmatised. As Hogan (1992; et al. 1994; 2001) was to subsequently explain, the changes that occurred for individuals within the group process did not result from a straightforward rational process; change did not occur simply via a health professional passing on information. Personal change had to be facilitated within a supportive social environment in which it was safe to explore and in turn acknowledge hearing difficulties and to first of all just talk about such difficulties. Then and only when, such difficulties, fears and embarrassments were not simply acknowledged but openly recognised and supported by others, would a psychological space open up that would facilitate personal change. Within this space the threat of hearing impairment to valued group memberships, be such memberships family, social or work-related, could be put to rest through expressions of inter-personal support. It is acknowledged that this process of change is not followed by everyone. The exception to this process, as demonstrated in the literature, is that an individual comes to a point where they can no longer deny having a hearing problem, because of the negative events that have ensued in their lives because of it and/or because group membership is threatened in the absence of corrective action. What was proposed by Getty and Hetu then was not a course but a process wherein a person and their spouse would set out with others with similar needs, to identify what difficulties hearing impairment caused them and to investigate solutions which they found to satisfactorily address the needs which they identified. The process within the Montreal Program serves to enable 59

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individuals and their spouses to embark on a problem-solving process to identify interpersonal (rather than audiological) difficulties surrounding hearing impairment. Central to the program was the perspective that in the absence of the problem-solving process, it would be very difficult for behavioural/ attitudinal change to occur for either the individual or members of their collectives. And that without such change the social factors underpinning hearing disability could not be addressed. The program then centred on three basic steps (Hogan 2001): • problem identification pursued in the presence of psycho-social support

and affirmation of group members, • exploration about the nature and causes of such problems, and • the resolution of such problems through problem based training, underpinned by the principles of group work that are now readily evident in clinical approaches such as acceptance and commitment therapy. It is important to recall that at the time Hetu and Getty were developing their work, the Ottawa Charter for Health Promotion was gaining support and recognition across the western world. The Charter held that: health promotion is the process of enabling people to increase control over, and to improve, their health. To reach a state of complete physical, mental and social well-being an individual or group must be able to identify and realise aspirations, to satisfy needs and to change or cope with the environment (WHO, 1986).

These values were resonant in Hetu and Getty’s work that sought not simply to assess hearing impairment and dispense hearing aids, but to offer clients psychological support, information and skill development. In subsequent chapters I examine the concepts of reluctance and misperception more thoroughly. But if for now the reader is prepared to admit their validity and relevance, it follows that any intervention concerned to address hearing impairment for a social or psychological lens would have to take such dynamics seriously. And Hetu and Getty did just that; they held that where reluctance and misperception were at play, policy makers and practitioners needed to approach the engagement of potential clients in a sensitive and careful manner. In turn their process of intervention centred on individual empowerment coupled with a program of follow-up; for outside the supportive environment of the program, the dynamics of reluctance and misperception could readily come back into play in a person’s life.

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Contrasting Approaches

Given the need for a deeper understanding of these issues it is therefore important to note that there are distinct differences between Hetu and Getty’s process and approaches adopted by other rehabilitators. First, the Montreal Program places considerable emphasis on enabling the client to participate and remain engaged in the problem-solving process. Second, it is a problemsolving process that people engage in – not treatment as such. Consideration has already been given to the significance of the problem-solving approach and the significance of the reluctance phenomenon. Hetu and Getty’s approach to offering a service to people with hearing impairment is quite distinct from the approach of other practitioners. The nearest approach to the Hetu and Getty program is that of Pengilley (1975) who identified anxiety as a key phenomenon in the process but who failed to address the impact that such anxiety could have upon a person seeking assistance. There is a vast array of material available that address the provision of communication strategies for managing hearing disability at the individual level. These materials have been developed over many years and are widely available. Be it work in Denmark (Anderson 1991) or Australia (Della Vale 1988; Pengilley 1975; Plant 1976, 1977; Erber, 1996; Hickson and Worrall 2003) existing practitioners are well acquainted with how to didactically or interactively teach people to use communication tactics to improve communication. The limitation with all this work though has been that such programs are based on a false syllogism – they assume that hearing tactics are easy to teach; that all that people need to do is to grasp the tactics and then apply them. I trust that the insights offered above with regards to the Montreal Program make it apparent as to why such an approach is unlikely to succeed. For sure, clinicians can teach clients such tactics; however, if stigma is not addressed then service users will be unlikely to use them. Moreover, when stigma is not addressed in the context of using tactics, people face the very real possibility that the proposed solutions are in fact, stigmatising themselves and for this reason most people will not readily use them if they can avoid doing so. The other approaches noted above are also distinctly different from the Montreal Program. First, none of these other approaches identifies or attempts to assist the client to manage anxiety or the reluctance phenomena. Second, the approaches are based on the medical model which does not suit to the client’s problem solving needs particularly at this point in the process. The third point of variation is the locus of decision making. Getty and Hetu’s process supports the client to develop their own health assessment and decision-making skills as is supported by the Ottawa Charter whereas the medical model relies on the professional to assess health and prescribe treatment. The fourth significant difference is that in the other programs described, emphasis is given to hearing 61

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aid fitting as central to the rehabilitation process. In these approaches, hearing aid fitting is seen as the primary and focal point of rehabilitation. Taking the Program Beyond Canada

These important conceptual breakthroughs, which were made by the Canadians, were quickly recognised by leading Australian researchers on noise management and industrial deafness, Professor Bill Noble (then at the University of New England) and Mr Richard Waugh (then at Worksafe Australia). Noble and Waugh worked together to bring Hetu and Getty to Australia in the spring of 1991 for a national lecture tour. As part of the 1991 lecture tour I recruited a group of metal workers with industrial deafness to participate in a trial run of the Montreal Program that was run by Hetu and Getty at a neighbourhood centre in south-western Sydney. In the view of the Canadians, the program readily translated across cultures. In turn I subsequently commenced an evaluative study of the Montreal Program under the guidance of Bill Noble and Christine Ewan at the University of Wollongong. The Australian Work on Psycho-social Approaches to Hearing Impairment

Our work on the utility of the Montreal Program (Hogan et al. 1994) made it evident that people in Australia with industrial deafness had similar experiences to those in Canada. Moreover our work had independently evaluated the Montreal Program and found that it had the capacity to reduce peoples’ sense of stress in relation to their hearing impairment, improve their self-confidence and led to people taking appropriate steps to manage their hearing. So in my view, taking the program forward towards full implementation was the next logical step. However, following the death of Raymond Hetu and with Louise Getty’s time being increasingly consumed by leadership responsibilities at the University of Montreal, I lost close contact with developments with the Montreal research group. This left me feeling isolated and alone as I worked towards a systematic implementation of their service model. Convinced as I was as to both the conceptual as well as practical merits of the program, I began a series of collaborations that would see the program replicated across nations and across differing consumer groups. I first started working with the teams at the Mater Hospital Cochlear Implant Program (Brisbane, Australia) and the New Zealand Cochlear Implant program. These groups underwent training in the program and a series of studies (see Hogan et al. 2001; Hawthorne et al. 2004) ensued with these studies documenting the efficacy of the approach 62

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in these settings. The popularity of the program grew and it was not long before Claire Sheridan (Cochlear UK) invited me to train providers in the United Kingdom. In turn Claire became a champion of the process and continues to offer programs today. In the United States, the late Professor Margot Skinner was keen to see the program tested in the American setting. Margot arranged for me to meet a very talented clinical psychologist, Dr Gitry Heydebrand, in St Louis. Gitry came out to New Zealand and Australia to observe the program in action before returning to the United States to successfully implement the program in collaboration with Susan Binzer (Heydebrand et al. 2005). Following the success of the program with people with cochlear implants, Jessica Lissaman, the then leader of hearing therapists in New Zealand arranged for me to provide training in the program in New Zealand. Similarly training was provided in Australia to teachers in the consumer-centred organisation, Better Hearing Australia. Better Hearing Australia is presently working towards a systemic implementation of the program at a national level. Rebecca Tooher (2002) in turn conducted her ground-breaking study on the psycho-social experiences of young deafened people. This study found that young people experienced problems fitting in socially and that they were unable to manage the negative impact of hearing impairment, on social interactions. Tooher (2002) observed that social barriers existed which prevented young people with hearing disability from participating in routine activities of daily life, such as the school community. To address these issues she proposed the development of a program that was similar to the intent of the Montreal Program in that such a program would increase their resilience in the face of such marginalisation. Looking back there has been extensive, global engagement with the program, its ideas and tools over time. However, it was far from an easy process and each project was conducted on a budgetary shoestring, if a budget existed at all. While systemic pots of funds existed for the provision of the program in Australia (e.g. workers’ compensation rehabilitation programs and the national government’s Rehab Plus program2), procedural barriers have served to prevent 2 https://industr y.hearingser vices.gov.au/w ps/portal/hso/site/prof/ newsfeed/archived/cspns_2012/cspn_2012_17/!ut/p/a1/tVLLboMwEPyV5sA Ree0SIEeaVm0eqEr6Ai7IMQYcBUOwm1b9-pikaXtJ0xzqw2pWWo1ndhYlKEK JpBtRUC1qSVddn7jpdAQEEwfG_rODIRjORtd-OAEAjF5QghImdaNLFJeqvm C11FxqC5rXxUowC8q64qZy2gpZpE1b51ypHbuyQPI3lXOeWUBbVopNh5hq pEoJYLLHO5hir_upoQXPuBKF3HVMZCj2CeZsAcT2HEJsx-euPcCDgU25k_ uY437mgjESGyNw5AXwJ58_R-4vPQIjb_7kuv0bDDN8YmACnwO_aIiNSOoiluMHs50fYLQO5twfGpPZs-kDYdh0WWlS1vIvEbRIWYUHWJG0XfMe_ wVs6EQy_U6Ccxhdcf0rlH0z5fVVJW_zKfu_O7jMa-qNFRX_Tjo9bZF9LtE/dl5/ d5/L2dBISEvZ0FBIS9nQSEh/ 63

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the broader deployment of the program. To this end, in 2011 the Sydney Myer Foundation provided me with the resources to produce an on-line version of the program – the thought being that in the absence of funding, individuals may be able to access the program if they wished to. However, in the absence of a coherent engagement strategy, the website has had little take up to date. In 2012, working in collaboration with Dr Susan Brumby (National Centre for Farmers’ Health) and Dr Warwick Williams (National Acoustic Laboratories), we secured a grant from the National Health and Medical Research Council in Australia. Using these funds we successfully extended the application of the Montreal Program to Australian farmers and their families. At the time of writing the national youth program for deaf and hard of hearing adolescents, Hear for You, is also collaborating with me to extend the program to their members. In addition to extending the program to other groups and to other countries, our earlier research had opened up a series of research questions that needed to be addressed. First, no serious conceptual work had been undertaken on the psycho-social aspects of hearing since Rutman (1989). And following Raymond Hetu’s death a considerable gap had opened up in this work. Second, I encountered substantial institutional resistance to the provision of funding a program that was evidently effective, and that if offered early, would lead to a reduction in morbidity and mortality associated with the secondary effects of hearing disability. Conceptually there was no other coherent framework available that explained the psycho-dynamics of hearing impairment, the formation of the self and social identity. It would take another ten years after Hetu’s death before a renewed momentum would gather around the work he commenced. This change came in the development of a core group of Canadian and North American researchers (Jean-Pierre Gagne, Kenneth Southall, Mary Beth Jennings and Tony Leroux) who picked up where Hetu and Getty left off and in turn proceeded to extend this work with theoretical and applied studies. In addition, the focus of their work went beyond hearing disability amongst workers with noise-induced hearing impairment and addressed the needs of other significant groups such as older people. Third, there was no substantive body of evidence that brought together a compelling case as to the social and health consequences of hearing impairment. Below I will briefly summarise my contribution to the conceptualisation of a psycho-social theory of hearing and in turn note the subsequent and concurrent developments of this thinking in Canada and North America. But before doing so I will briefly recount how I approached the question of bringing together a body evidence that supported a case for funding and action on alternate service programs. I literally commenced this work with a smoking gun. We knew that people with hearing impairment had poorer health outcomes and quality of life, but we could not empirically explain why this was so. Moreover, it was not possible 64

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to secure research grants for such an embryonic idea, particularly when hearing aids were, and continue to be seen, as the gold standard ‘treatment’ for hearing disability. I did however, have access to a series of large national datasets which had important information in them concerning hearing and well-being. Commencing with the Melbourne older people’s study we produced our first paper in 2001 (Hogan et al. 2001), which demonstrated that hearing aids alone were not sufficient to address the health and quality of life issues for people with impaired hearing. We also showed that mental health and other health issues remained unaddressed in these populations, even when they had received hearing aids. These kinds of findings, which are summarised at the beginning of this book (and which are detailed in Hogan et al. 2014), would be found across all the existing and independently collected datasets. Even the national data on Australian children with hearing difficulties demonstrated the psychosocial and educational challenges that beset the group. Evidence alone, it seems, is not sufficient to create a coherent policy response. Theorising Psycho-social Aspects of Hearing Impairment

I commenced theorising the psycho-social aspects of hearing impairment in the years 1990–1994, during my study of the original Montreal Program. The focus of this study was workers with industrial deafness. I subsequently further developed this approach through my study of people with severe to profound hearing impairment. I have approached this work from the lens of the sociology of the breach (Akram and Hogan 2015) – that is by studying where things are more manifestly breaking down, one gains a sense of what the experience may be like for people whose experience is more average, if less obvious, than others. My work has brought forward a number of key insights that have contributed to the development of understanding the need for social and psychological as well as political approaches to gearing impairment. First, building on Corker’s work (1988) I demonstrated that phono-centricism can be deeply written into the values, structures and practices of our society which in turn serve to deeply influence the formation of the self, as evidenced in Foucualt’s (1988) work on the technologies of the self. This work in turn provided insights into how hearingness can be stigmatised and highlighted the need for forms of consciousness raising amongst, and by people, with hearing disability. This work brought forward important conceptual work which would serve to explain the importance of addressing stigma within the Montreal Program. Second, I have brought forward insight that hearing is an issue of personal and social identity and demonstrated how the Montreal Program can serve as a basis for addressing the negative impacts of phono-centricism and opened up possibilities for integrating the experience of impairment into personal 65

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identity and social networks. Third, I have conducted the necessary empirical work (see Chapter 5) which validates other key conceptual components that underpin the Montreal Program (e.g. reluctance and misperception). Fourth, I have developed a significant body of evidence that demonstrates the social, psychological, economic and health impacts of stigma and hearing identity (see a summary of this work in the Introduction and also Hogan et al. 2015). This body of work has served to build the case for the public support of funding for Montreal style hearing programs. And finally, I have undertaken the evaluation of the Montreal Program in a diversity of settings, countries, service groups and various providers, such that the program is ready for implementation as and when paradigm change is achieved. The Canadian Work on Stigma and Hearing Impairment

The first critical insight developed by the latter group of Canadian researchers (Jean-Pierre Gagne, Kenneth Southall, Mary Beth Jennings and Tony Leroux) arose in 2006 (Southall et al. 2006) when the researchers identified that stigma (or fear of stigmatisation) served as a significant barrier to older people seeking assistance for their hearing, especially with regards using hearing aids or similar devices. The paper also opened up, for the first time, the issue of the kinds of language that should be used in regards to describing technologies in ways that were not stigmatising. This discussion opened up the more general question, noted earlier in this book, about people moving to use collective descriptors about the group that were seeking to enable rather than marginalise. This paper also served as a link with thinking emerging in the broader field of social identity theory that was becoming increasingly cognizant of issues such as selfstigmatisation, the legitimacy of identity and the social nature of identity. Here they reaffirmed Hetu and Getty’s original insight on the important role played by significant others in enabling and facilitating change for and by the person who had a hearing impairment. However it would be a few more years before these Canadians published on the issue of stigma directly, particularly when they studied why it was that workers were reluctant to disclose their hearing impairment. And it is here that their work truly progressed insights into our understanding of stigma in relation to social identity. Progressing the work of Croker et al. (1988) they framed the stigmatisation of an individual in terms of that individual possessing an ‘attribute or characteristic that conveys a social identity that is devalued in a particular social context’ (Southall et al. 2010, p. 699). In turn they produced an excellent summary of the literature noting a variety of factors that served to stigmatise hearing impairment. These factors, which are consistent with the genealogy of hearing summarised in Chapter 1, included commonly held beliefs 66

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are that hearing impairment is associated with reduced intellect, undesirable behaviours, ageing and stereotypes about the capacity of people to participate in specific social activities. Moreover, this group brought forward the insight that individuals could internalise these notions of stigma, accepting or believing them to be true, even if such thoughts and beliefs existed at an unconscious or sub-conscious level. Self-stigmatisation in turn was linked conceptually to lower self-esteem and as a potential barrier to individual and social change. Central to their thinking was the issue of the capacity to bluff and pass (discussed in Chapter 2). They observed from their research and the literature that individuals, in their attempts to mask or hide an impairment, could consume such emotional energy or resources so as to reduce their health, wellbeing and quality of life. In turn they progressed their thinking to develop what they referred to as the stigma-induced identity threat program that was based on two premises: experiencing stigma can induce stress which manifests itself in a manner similar to any other stressful situation experienced by a person being stigmatized; and stigma threatens one’s identity. Individuals are thought to approach situations that are potentially stigmatizing by appraising collective representations, situational cues and relevant personal characteristics (Southall et al. 2010, p. 3).

The group’s current work is focused on developing and testing interventions that are designed to enable individuals to identify and manage (self)-stigmatisation related to hearing impairment. Other Important Institutions and People

In concluding this section I wanted to draw attention to a variety of other programs of intervention that have taken on or given value to a social perspective on hearing disability. These have included Jessica Lissaman (New Zealand Life Unlimited program for people with hearing impairment), Ms Ellen Giles (New Zealand Cochlear Implant Program), June Young, Karen Pedley and Emma Rushbrooke (Brisbane, Australia), Dr Lorraine Gailey (Link Centre for Deafened Adults; Eastbourne, United Kingdom), and Claire Sheridan (Cochlear Implant Program in the United Kingdom). In the USA, Professor Margot Skinner, Susan Binzer and Dr Gitry Heydebrand developed their approach in St Louis, Missouri. Throughout this time thinking, writing and program development about differing social aspects of service delivery were being developed by a variety of scholars and clinicians. Some of the well referenced work in this space not mentioned so far includes Andersson and Willebrand (2003); Dye and Peak (1983), Thomas (1988), Corker (1988), Rutman (1989), Erber (1996) and Hickson and Worrall (2003). Works such as these have contributed to the 67

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change process. In more recent years the emergence of the very well-resourced Ida Institute in Copenhagen, has meant that a venue now exists where the social agenda in hearing can be further progressed at a global level. With training and resources becoming available across the world, it would seem that paradigm change is imminent. However, while any such efforts fail to encompass the paradigm shifting insights of Hetu and Getty, they run the continued risk of producing great resources that fail to achieve social and lasting personal change.

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Chapter 4

The Need for Paradigm Change Anthony Hogan and Isabel Latz What is of interest is not that society ignores disabled people but how it takes them into account (Barton 1992, p. 5). The 1960s mantra ‘personal is political’ continues to this day to impact on social theory (Goodley 2014, p. 47). Introduction

This chapter seeks to bring further insight to bear on the way in which our society structures services related to the well-being of people with hearing disability. As the epigraphs above highlight, for people with disability, the political is deeply personal and as a collective, we are tired of being left outside the discussion on citizenship and participation. The chapter commences with a synopsis of the structuring of hearing services and social relations as they stand today, the status quo as it were. We then move on to consider what an alternate structuring of models of change and service provision might look like when disability is considered as a citizenship issue. And while positing a new way of doing things is well and good, it would be naïve at best, to propose a new way of doing things if, at the same time, we did not take into account the basis upon which this could be done. To this end we consider, within societies which privilege the ableist values of the neo-liberalist state, on what basis people (both individuals and their respective collectives) may legitimately make demands on the state to respect, protect and progress their wellbeing. The Status Quo

In Figure 4.1, we seek to make explicit the logic and prevailing tensions which underpin the current delivery of hearing services. The existing program logic suggests that as one comes to accept hearing impairment and adopts appropriate adaptive coping strategies (such as the wearing of hearing aids and the use of communication tactics), people adapt to their hearing impairment, with successful social participation and well-being resulting. Access to this audiological Camelot (Ross 1987) is stymied by a non-acceptance of hearing disability within society as well as amongst people with hearing impairment, with such non-acceptance exacerbated by the dynamics of stigma, misperception and

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reluctance. The literature supporting device-centric interventions frequently constructs reluctance to engage in activities that will stigmatise and the use of identity protective coping behaviours as maladaptive (Hogan et al. 2009; Helvik, Jacobsen Hallberg 2006; Kramer et al. 2005). Behaviours labelled maladaptive include passing and bluffing (pretending that one understood things when in fact one did not), minimising problems, denial and reluctance to talk about hearing problems and consequences, and avoiding specific social scenarios (Hetu 1996; Helvik et al. 2006; Kiessling et al. 2003; Thomas 1988).

Figure 4.1

The traditional model of governing hearing impairment 70

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Maladaptation, it is in turn argued, results in communication breakdown, problematised inter-personal relationships, poor health outcomes and reduced social participation. With such dire consequences at stake, it is difficult to believe that people with hearing disability do not present for help in larger numbers. But the thing is – they do not! The pivotal question then is concerned with why people do not seek help. The answer to this quandary lies in the fact that engagement in stigma management behaviours can be stigmatising in themselves. In addition, stigma management behaviours are associated with an increase in personal levels of distress (Andersson and Willebrand 2003; Andersson and Hägnebo 2003; Donaldson, Worrall and Hickson 2004; Dye and Peak 1983; Hallberg and Barrenäs 1995; Jansson et al. 2002). Inaction then is driven by a double bind – the experience can be stigmatising and the solutions can be stigmatising as well. Hearing impairment is regularly experienced as an individualising process which takes no account of the social context, the social construction of the concept and lived experience of disability and issues of social position and legitimacy. Earlier we saw that the limitation in the current device-centric model is that it primarily embodies the problem in the individual with hearing disability and does not take into account the very important insight that the support of others is needed to facilitate a sustained change in communicative practices (Thomas 1988). Strategies such as asking people to reduce background noise or make accommodations such that one can hear are useful tactics when the request is socially supported. However, since the restructuring of social communication has generally not occurred among family and the social network, such requests end up being made in the context of someone doing one a favour, a request for special help and the implicit creation of a social debt (one now owes the other person something) (Jost and Major 2001). Notably, where people living with hearing disability perceive that the social environment is open to receive requests for communicative participation, such requests are more likely to arise (Andersson and Willebrand 2003; Dye and Peak 1983; Thomas 1988). In fact there are several key limitations with the current model of intervention. To begin with, it is steeped in the values of a medical model of the body which does not adequately address the stigmatisation of people with hearing disability or the need for social change. Moreover, device based interventions have not routinely addressed the psychosocial components of living with hearing disability, such as providing individuals with skills to improve communication (Chia et al. 2007; Hetu et al. 1993; Kramer et al. 2005; Lindley and Lindley 2009; Weir 2009) or manage stigmatising social interactions. Similarly, the marketing of these services commonly, even if unintentionally, reinforces stigmatisation particularly through its emphasis on making hearing disability invisible. At the same time the available evidence suggests that an individual’s readiness to use hearing aids is lowered by psychosocial issues such as acceptance, fear of stigmatisation and social identity (Chia et al. 2007; Hogan et al. 2009; Smith et al. 2005). 71

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Without doubt there is an eloquence, if not deceptive acceptability, about the model proposed in Figure 4.1. At first glance it seems just fine. And so it should. It encapsulates, what we believe to be the taken-for-granted, the selflegitimating, the inevitable logic, which is central to a successful governance process. Within Foucault’s (1988) thesis on technologies of the self, people choose to form themselves in certain ways, as it seems to be the self-evident, socially responsible, moral thing to do within the ethical project of the self: Governmentality implies the ethical relation of self to self, and that it concerns strategies for the direction of conduct of free individuals (Dean 1994, p. 58).

Foucault’s project was about making this process explicit and elsewhere the efficacy of such a process on the formation of deafened people has been documented (Hogan 1996; Hogan 2001). In that context, those who lose all their hearing for example, seek to remake themselves as hearing people in order to avoid the worst sanctions administered, if ever so subtlety, by the stigmatising process central to the success of the governable project; a project which is ablest to its core. Chapter 2 made it evident that central to the ableist project is a morality which centres on the rightness of forming oneself to be able to use the body in one way over another, a morality which goes to heart of the insight that identity is performative (Moore 1994; Warren 1988). As Foucault pointed out, within such a process of self-formation: The individual delimits the part of himself that will form the precept he will follow, and decides on a certain mode of being that will serve as his moral goal. And this requires him to act upon himself, to monitor, test, improve and transform, himself. There is no specific moral action that does not refer to a unified moral conduct, no moral conduct that does not call for the forming of oneself as an ethical subject; and no forming of the ethical subject without ‘modes of subjectification’ and an ‘ascetics’ or ‘practices of self ’ that support them (Foucault 1990, p. 28).

A central feature of the existing model is that it has emerged from within a long-standing process of governance. This governance process had its origins in a specific ontological position that involved certain beliefs about what is normal, taken-for-granted and acceptable. Moreover this governance process, by the very fact that it legitimated some values over others, set up a legitimating framework which in turn was used by policy makers to deploy specific social strategies in the governance of difference. As Lukes (2005) and Foucault (1988) have shown, values inherent within policy and service delivery models can be deeply internalised by service providers and users as seemingly legitimate ways of being, even if such ways of being are not in their personal best interests. It is important therefore to recognise the nature and structuring of existing hearing 72

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services and how these foundations can serve as barriers to change. Before progressing with a discussion about the need for paradigm change in hearing services, we need to digress a moment and briefly recall how hearing services, as we know them today, developed. Device Based Interventions – Necessary but not Sufficient

Central to this model of governance is the ethical project of the self, a project that is concerned with acceptance of one’s lot in life and the adoption of compliance strategies. Inherent in the adoption of compliance strategies are the values which underpin Parsons’ sick role (1951). Within this role the expectation exists that one will do everything possible to effectively manage one’s condition, irrespective of its impact on the self. Having done so, and stoically bearing up to the stigma which Gaeth (1979) observed inevitably goes with complying with the medical model, one can expect to secure some level of additional support from society, to participate in society. As Foucault observes, participation in such processes permits: … individuals to effect by their own means or with the help of others a certain number of operations on their bodies and souls, thoughts, conduct and way of being, so as to transform themselves in order to attain a certain state of happiness, purity, wisdom, perfection or immorality (Foucault 1988, p. 18).

This text demonstrates, both in theory and empirically, the many flaws which are inherent to this model. With respect to the present topic, people with hearing disability are avoiding engagement with this model in droves while others delay engagement with it as long as possible (Kochkin 1999). Moreover, even for those who do engage with it, the model fails to deliver on many of the promises it makes. Research conducted by the market research company instinct and reason1 has yet again demonstrated that up to 40 per cent of people who receive hearing aids, rarely use them, if at all. These data present a picture of the problems with the device-centred model that has been evident in the literature for some time (e.g. Smeeth et al. 2002; Chisholm et al. 2007) Importantly, even among those who report satisfaction with the hearing devices they receive, our data suggests that 60–70 per cent of these people report being stigmatised. Indeed, the people who engage with this model in earnest are those whose hearing is such that it is difficult for them to participate at any level in society, without the help of such devices. But as the adage goes, while the devices might be useful in and of themselves, they are not sufficient to ensure the well-being of members of this group. Indeed, it is far from the case, 1  Survey of over 55s, September 2014. www.instinctandreason.com 73

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that people who have engaged in the medical model are somehow exempted from the interpersonal difficulties associated with hearing disability. Drawing on the data reported previously we found that one third of people with hearing impairment report that hearing disability directly impacts on their relationships and that it is difficult to interact with people who do not understand how to accommodate their communication needs. Similarly most (75 per cent) reported experiencing embarrassment (for example, being stigmatised) associated with breakdowns in communication, two out of three had trouble following group conversation and 15 per cent reported feeling distressed at the thought of participating in a routine social activity. It is hardly surprising that one in five of this group found it easier to simply stay home despite the fact that they have participated in the recommended process (see Hogan 2012). Finkelstein (1993) argues that implicit within the design of disability services is not the production of equitable social outcomes, but what Burchell (1991) referred to as the adherence to social processes which secure the existing nature of social relations. Finkelstein (1993, p. 35) argues that ‘as long as there is no medical ‘cure’ disabled people are inherently socially dead’ where being socially dead relegates one to the domain of maintenance oriented welfare services. Considered within such a framework, welfare services are not intended to improve the well-being of people, but rather are focused on maintaining them in some steady state of inequality. As Foucault (1991) observed, the form of governance which emerged in the 19th century, was central to the development of the governance of people with disability. It was first and foremost concerned with securing a given form of social relations which contained the threat posed by the emergence of a collective of people with disabilities in urbanising Britain. The governance process firstly contained the threat to the civil order, evidenced as it was in the French and American revolutions and it constructed a new moral order so that the emergent neo-liberalist state could maintain a given social order and relieve itself (as much as it could), of the economic burden of caring for people with disabilities through the construction of the discourse of self-sufficiency (Hogan 1997). Foucault remarks: The ensemble formed by the institutions, procedures, analyses and reflections, the calculations and tactics that allow the exercise of this very specific, albeit complex form of power, which has as its target population, as its principle form of knowledge political economy, and as its essential technical means apparatuses of security (Foucault 1991, p. 102).

Those who do not (or cannot) embrace this compliance come adherence model are marginalised as being inherently morally flawed (not motivated to help themselves), and at times positioned as being simply mad. Typically their social position is discounted because they lack the necessary motivation or commitment to take responsibility to properly manage their hearing disability 74

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in line with clinical expectations. By contrast with those who have participated in the deficit model, and in keeping with Parson’s (1951) sick role model, people who have not complied with the governance model find little sympathy when they encounter social participative difficulties. Notably, it is not as though those who have not participated in the compliance model are unaware of the social outcomes of those who have, as they socialise with them routinely at church, at clubs and in their neighbourhoods. As one engages with the compliance model a balancing act must be struck between the pain of avoiding stigma and the pain of accepting stigma. As this is far from an ideal outcome, we need to consider what alternatives are available to people with hearing disability. But before we can do this, we first of all need to consider the basis upon which people, such as those with hearing disability, might legitimately make demands for social change within a liberal democratic state. A Justification of the Need for Change

A central argument running through this text, evidenced in the literature and through the presentation of new data, is that people with hearing disability are a disadvantaged group in our society. The text has presented the argument, that such disadvantage has been underpinned by the structuring of communicative relations, centred as they are on historical forms of governance, established as they were with a view to controlling people with disability, to secure a given form of social relations. The service models which resulted from this base were set up to meet governmental ends rather than equity outcomes, and so in essence maintain people within their marginality. No doubt many hearing service providers will object to this representation of the design of the service system, concerned as they are to ensure the best outcomes for the people they serve. However, we stand with Lane (1993) who argued that such benevolence may in fact mask unexamined collective and individual assumptions, which underpin notions of how best to help. Specifically, most hearing services are based on a design which gives primacy to ensuring people hear and speak, such that they can, as Bell argued, take their place in the hearing world (Winefield 1987). However, it is a world in which the underlying mode of ableist governance is taken for granted. While services will strive to ensure the best outcomes for their clients, such outcomes are seen as logically flowing from the provision of hearing devices and speech therapy; implying a trickle-down effect ending in social inclusion. Further evidence of the social outcomes of people who use these services is required. One of the key successes of a governance process is its capacity to convince targeted individuals of the rightness of processes which may disadvantage them – the internalisation as it were, of self-oppression. And certainly within our work with people with hearing disability, there has been an enormous resistance 75

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to change which has been driven by two factors. First, is the already discussed fact, of the fear of being stigmatised, and in this instance, a fear of being further stigmatised. Second, despite wanting to benefit from changes in the structuring of ableist social relations, individuals find it difficult to see how a change targeted to benefit them, seemingly over others, can be justified. It is to this last issue that we now give our attention. Within welfare capitalism, the rights of people to make claims on the state can be based on a need to: eliminate abuse (Briggs 2006) remove risks which result in poorer health and disability (Briggs 2006) reduce inequality (Briggs 2006) secure a minimum income (Briggs 2006; Commission for Social Justice 2006), and • ensure a given level of social participation (Titmuss 2006; Commission for Social Justice 2006). • • • •

Societies such as Australia, address social needs through a form of welfare capitalism. The justification for a state response to addressing such needs can be found within several rationalities including: • remedying diswelfares arising from the structuring of social relations to

advance the interests of one group over another • international conventions and treaties, and • politically secured social rights such as the rights of citizenship.

According to Titmuss (2006) diswelfares encompass such things as: (T)he obsolescence of skills, redundancies, premature retirements, accidents, many categories of disease and handicap, urban blight and slum clearances, smoke pollution and a hundred and one other socially generated disservices. They are the socially caused diswelfares; the losses involved in aggregate welfare gains (Titmuss 2006, p. 44).

For Titmuss (2006, p. 41), the provision of services and social benefits represent ‘partial compensation for disservices, for social costs and social insecurity which are the product of a rapidly changing industrial-urban society. They are part of the price we pay to some people for bearing part of the costs of other peoples’ progress’. Notably Titmuss (2006, p. 44) argues that it is not acceptable to allow ‘the social costs or diswelfares of the economic system to lie where they fall’. In other words that the costs of being disadvantaged by societal decisions which benefits some over others, should not be borne by the ones who wear the down side of collective decisions. 76

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Taken within the context of the arguments already developed in this text, one can argue that if society is determined to base itself on an ableist design, and that the diswelfares associated with such a system are apparent, then those so affected are entitled to financial compensation and a guaranteed level of service provision. This combination of benefits may offset the cumulative disadvantage of being used in a certain way to enable the rest of society to do well. From a social justice perspective though, this is a bottom-of-the barrel argument, but it is an argument for some level of restitution nonetheless. The second possible justification for making a claim on the state arises when the state is a signatory to certain international conventions and treaties such as the United Nations Convention on the Rights of People with a Disability2, noted at the beginning of this book. Conventions such as these are a mixed blessing. On the one hand, they provide a point of leverage which advocacy groups can use to argue for rights services and benefits. However, because such statements tend to be aspirational rather than legislated as rights, the extent to which interest groups can argue for change is limited. As Goggin and Newell (2005) argue, the International Year of People with Disability came and went the best part of three decades ago. While it resulted in perhaps greater wheelchair access to specific places, the social position of people with disabilities did not noticeably improve. In the Australian context, the United Nations Convention on the Rights of People with a Disability has been endorsed by the Council of Australian Governments, but there has been little policy change put in place to ensure that barriers to social equity have been removed. In the employment domain, for example, Hogan et al. (2012a) argue that the person with a disability, who is most likely to get paid employment, is the person who is able to self-accommodate at work. That is, people with disabilities get jobs provided other people do not have to change to accommodate their needs. The third possible justification is that citizenship in a nation-state, by its very nature, gives political rights and offers a mechanism through which one can ensure equitable participation in society (Bellamy 2008). Aspects of citizenry take into account: accessing to the material preconditions of agency living in accordance with the societal standards of the day participating in the social decision-making process enjoying basic rights such as those defined in international laws, conventions and agreements • having humanitarian rights such as being protected from factors which meant one would not be able to live in accordance with the societal standards of the day, and • • • •

2  http://www.un.org/disabilities/convention/conventionfull.shtml 77

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• the notion of the public good.

Bellamy (2008, p. 1408) particularly noted that citizenship provides the ‘right to have rights’. Within this context, citizenship rights are understood as something which grow and emerge over time, that have to be secured and in turn protected, rather than taken as givens in absolute terms (Brooks and Manza 2007). We saw in the introductory chapters of this text that the rights of citizenship are indeed things which have emerged over time, and are things which for most people, had to be fought for, secured and maintained. Without rights, such as in the 19th century, one was a pauper (Marshall 2006). Within welfare capitalism, Brooks and Manza (2007) argue that the democratic processes can be used to focus the attention of policy makers on addressing the structuring of social relations in which people find themselves at a given time and place. Within the democratic state, individual and collective values drive social decision making, not rationalised economics. However, for change to occur Brooks and Manza (2007) argue that three factors must be fulfilled: • people are clear about what they want given the availability of competing

choices • the rationality underpinning the demand for change is be consistent and coherent • the rationality has to resonate with the public (Brooks and Manza 2007, p. 28). Any momentum for change must also be sufficient to counteract the inertia which develops within systems of public administration, due to path dependency. Brooks and Manza (2007, p. 24) argue that the ‘early developments in the history of social policy set nations on “paths” that, once adopted, are difficult to reverse’. The problems raised in part by path dependency support arguments for not trying to overhaul existing but underperforming models of hearing services, accepting that it is better to set them aside and replace them with a new service model. A Citizen-centric Model for Hearing Disability in Our Society

Figure 4.2 proposes an alternate way of considering the social position of people with hearing disability and the manner in which the issue of hearing and social participation might be approached from the perspective of a citizenship model informed by the social model of disability. Social and citizen-centric models of disability (Hetu and Getty 1991; Oliver 1993) understand ‘disability as a normal part of everyday life, not something to be overcome, but something to be integrated into the flow of everyday activities’ (Hogan 2001, p. 7). As almost one in five 78

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people have a hearing disability, it can readily be considered that one in every 2.5 conversations (at a population level) occur where at least one of the actors has hearing disability. Given this population impact, it is quite reasonable to expect that hearing disability be accommodated in everyday communication. However, the current literature on the well-being of people with hearing disability problematises the social aspects of communication problems within the person with hearing disability (for example, mental illness), rather than seeing such difficulties as a shared social responsibility. From the perspective of the social model of disability, practices associated with pathologising the experience of disability form a part of the techniques of governance which were highlighted in Chapter 3.

Figure 4.2

Governing hearing within a citizenship model 79

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The medical model of disability (sometimes referred to as the tragedy model, for example, Oliver 1993) seeks to fix the individual, whereas, the citizen oriented social model seeks to rectify breakdowns in social arrangements. The deficit centred service delivery model, as we have shown from the literature, is highly problematic within itself. The best the deficit/adaptive model can offer people with hearing disability is enhanced skills for coping with contested identity and stigmatising processes; a pathway we note most people only passively (and we would add understandably) pursue. In the absence of social legitimation, the deficit model sets up people for constant social conflict, marginalisation and distress. Such distress naturally can and does impact on physical and mental well-being. Ironically, the solution to such outcomes has been the promotion of, as in the Australian model, ill-thought through interventions which have been tacked onto the existing service model. A genuine paradigm shift is required. A shift which recognises that: • ‘the meaning of disability is determined by the way our society is

organised’ (Finkelstein 1993, p. 11)

• ‘fundamental to disability is prejudice and economic inequality’ •

•

•

•

(Finkelstein 1993, p. 8) the social position of people with disability is the ‘the result of social factors such as other peoples’ attitudes, poor access, non-existent job prospects and poverty’ (Finkelstein and French 1993, p. 31) and as such that the ‘problem’ sits within the structuring of social relations and the broader social system, not within the individual (Finkelstein 1993; French 1993; Oliver 1993) individuals respond to oppression in differing ways. ‘Some people avoid barriers only to become isolated and withdrawn, others attempt to accommodate themselves to the restrictions in their lives, while others fight for the barrier removal’ (Finkelstein and French 1993, p. 32). inequality is caused by the way our society is organised and not by the functional limitations of any individual (public policy needs to focus on social rather than individual change (Finkelstein 1993, p. 9), and people with disabilities must be at the policy table defining their own needs and determining the kinds of services they want (Finkelstein 1993).

A key question underpinning a call for a paradigm shift centres on how such a change process can be brought into action. We saw earlier in this chapter that change can be catalysed through the constitution of a crisis which draws to the public’s attention the serious failings of the existing process; to place its credibility under the social microscope. Such a process though needs to be driven by people with hearing disability themselves. For this to happen, a ground-up process of change, working at the level of individuals and social 80

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networks, also needs to occur. Most importantly, people with hearing disability would have to take control of the design and delivery of the services they require to meet their needs, which arguably, they would be best placed to define. The focus would shift from one of containment to empowerment. As such one could expect a shift in the alignment and practice of the institutional processes so that they ensure that people can in fact enjoy an equitable social position which is manifested evident in the extinguishment of stigma, and genuine social participation and inclusion evidenced in equitable socioeconomic outcomes and well-being (Oliver 1993). Structuring Change

While the extent of power exercised within and around hearing services can have the appearance of being monolithic and centralised, the capacity to act has been shown to be located within a variety of actors working in a very large number of independent centres across Australia and indeed across the western world. The common element linking all these actors has been the ongoing functioning of the liberal economy (Osborne 1996), supported by broader notions of governance concerned to promote economic self-sufficiency (Gordon 1991; Hogan 1997) and the adherence of people with disabilities within it. The synergistic activities arising from the collaborative efforts of interested parties have been focused within individualising medical processes (Oliver 1996), legitimated by systems of meaning and symbolism, concerned with the formation of deaf people and individuals with hearing impairment as people who hear and speak. Based on the above mentioned underlying principles of society, people with hearing disability and their advocates have the right to be in control of the decision-making processes and services associated with their experience of disability. These people are active in shaping their own lives and seek to make informed decisions. These decisions relate to people’s understanding of their identity and reflect their concerns to get on with their lives as ordinary citizens. Under the National Disability Agreement, Government departments, publicly funded institutions and community organisations are required to recognise such rights and to work with people with hearing disability to see that they are realised. However, on a practical level, a chasm tends to exist between enacted and actual rights. As such people with hearing disability need to exercise the right to self-determination by contesting the processes which subjugate them. This in turn requires people with hearing disability to identify with, and evaluate, their own social position. Then, based upon the outcomes of such a process and assuming that agreement could be reached as to what constitutes such a position, they may achieve a point from which they can systematically engage with the systems which shape the meaning and practice of their everyday living. 81

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We have shown that the existing model of hearing services was developed at a time of crisis. The service base on which it was established was itself premised on certain assumptions about disability and society, which were culturally dominant at the time. After more than 50 years of focusing on devices, and with the evidence continuing to show that devices alone are not enough to address peoples’ needs for social inclusion and equitable participation, it is time to put in place systems of intervention which more comprehensively address the needs of people with hearing disability to achieve equal economic participation and social inclusion and to enjoy choice, wellbeing and the opportunity to live as independently as possible. Similarly, social processes are required which enable communicative change to be achieved within families, social networks and the workplace. The nature of potential service models which can enable change at the level of individuals and their social networks was discussed in this chapter. We conclude this work by considering how change can occur at the societal level. Attitudinal and communicative practice changes are required at the community level. First and foremost, hearing disability needs to be destigmatised. Just as vast spaces in the United States have seen a change in language patterns in keeping with the growing presence of Hispanic peoples, as more and more people have hearing disability, changes are made to how we communicate simply because it is just and fair. Differences in hearing are just such a given part of our society that encompassing diversity within our communicative interactions naturally flows from this situation. Notably gender and race rights were not achieved through the articulation of niceties but via the social affirmation of what were, and what were not, socially acceptable practices. One of the important domains that influence daily living for people with hearing disability is the accessibility of the built environment. As such, improving the acoustic accessibility of such spaces is a priority. It would be taken as given that buildings would be treated with acoustic tiling, soft furnishings, glare reduction, and loop (and similar communication systems) systems. Furthermore, that such modes of access were the norm rather than the exception. Just as public spaces presently provide for smokers, similar spaces would be provided for people who want background noise versus those that do not. Arguably people want to be able to access restaurants and clubs to enjoy the social company of their friends and not to have to scream at each other at point blank range in the hope of having a conversation. Instead smart businesses within the hospitality sector are already adapting to this social trend. The changes are being driven by business owners responding to continuing complaints from patrons that they cannot hear in bars and restaurants. The net effect of both factors is that such business owners are beginning to see that having acoustically accessible venues is a cost of entry in the hospitality industry, especially those seeking to attract the more affluent, over 50 years of age, market. The capacity to hold a conversation is 82

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being designed into venues. If such change processes were also supported by community education programs, members of the broader community might be alerted to factors which create similar barriers to communicative social participation. Moreover, such programs would inform people as to how to improve the accessibility of shared spaces. We return to the question of how to progress with a change agenda at a societal level in the final chapter.

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Chapter 5

Engaging in Change at a Personal Level – the Importance of Learning to be Affected Anthony Hogan

Introduction

The material in the previous chapters has brought forward several key insights. Without doubt, applied clinical approaches to addressing some of the interactive social aspects of hearing services have been around for quite some time. But at the same time, the efficacy of these approaches has been limited because takenfor-granted assumptions about disability have not been examined and because key conceptual and practical insights arising in sociology and social psychology have not been integrated into service design. Chapter 2 brought forward the insight that hearing is related to social identity and that adaptation to living with hearing disability involves an identity change process for both individuals and members of their family and social network (Hogan et al. 2011). The journey to the place of experiencing hearing disability in a more positive manner is depicted in Figure 5.1. In this chapter I wish to introduce a further insight from sociology – that of Latour’s notion of being affected. I contend that it is only as a result of coming to terms with being affected by an event that one can engage in a process of change at a personal level. A central thesis underpinning the Montreal Program is that people with hearing disability have not recognised that they are affected by impaired hearing. The Montreal Program is then concerned with a process of recognising that one is affected and as to how one is affected. The Program takes the position that it is only when people have addressed these first two issues that they are really ready to begin to engage with notions of personal change (Hogan 2001). So this chapter is first concerned with better understanding the notion of being affected. In turn the chapter further and empirically examines the extent to which people are reluctant to acknowledge their hearing difficulties or report that they misperceive the effects of hearing impairment. For within the logic of the Montreal Program, where these dynamics are at play, in the context of a fear of stigmatisation, that an engagement process concerned with being affected is truly indicated.

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Figure 5.1

The interface of hearing identity and the experience of difference

Latour’s Work on Learning to be Affected

Latour (2004) wrote about the process of ‘learning to be affected’. It does not matter for Latour what is affecting someone. Rather he draws out the point that as things change in one’s life, one may or may not realise that one is affected by specific things or processes. Elsewhere I have written (Hogan et al. 2012b) of the need for farmers to come to see how they are affected by simultaneous economic, social and environmental processes which, while outside of their control, impact on the viability of their farm and social identity. Yet at the same time such farmers have constructed success as a farmer as being about what they do. Learning that they are affected by such externalities is critical to their wellbeing since a higher than expected number of farmers suicide in the face of what they wrongly perceive as a failure of the self. Latour (2004) also wrote insightfully on the notion of the social where the social is about being connected with others. This argument is developed further in Chapter 2, where social identity centres on who I connect with, on what basis and how. However I note that to admit a stigmatising factor into the construction of one’s identity places at risk the tenure of that connectivity. As Latour (2004, p. 5) remarks, ‘the existence of specific social ties reveals(s) the presence of some specific social forces’. Such social forces, Latour observes 86

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(2004, p. 21) are ‘something invisible that weighs on all of us that is more solid than steel and yet so incredibly labile’.1 Latour’s (2004) work offers a philosophical and conceptual bridge between existing audiological practice and the Montreal Program. Central to Latour’s concern is a problem that has beset audiology for decades – how to integrate into practice the gap that exists between the insights brought to the table by clinical audiology, the outputs of its various hearing impairment assessment protocols, and the lived experience of having hearing disability – the scientific versus the subjective. This bifurcation of nature, as Latour (2004, p. 208) puts it, pivots off views that where ‘either we have the world, the science, the things and no subject, or we have the subject and not the world, what things really are’. To build the necessary insight Latour observes that sensitisation training is required through which the individual learns to develop the necessary insight to understand and describe the social experience. To illustrate this process he focuses on what it means to learn to have a nose in terms of a nose sensitive to the subtle differences in perfumes: … the odour kit is made of (a) series of sharply distinct pure fragrances arranged in such a way that one can go from sharpest to the smallest contrasts. To register these contrasts one needs to be trained through a week-long session. Starting with a dumb nose unable to differentiate much more than ‘sweet’ and ‘fetid’ odours, one ends up rather quickly becoming a ‘nose (un nez), that is someone able to discriminate more and more subtle differences and able to tell them apart from one another, even when they are masked or mixed by others (Latour 2004, pp. 206–07).

This is an instance of the process of learning to be affected. In teaching people to discover being affected and to own being affected, Latour (2004) proposed a process which provided people not just with a language, but with a safe place in which to undergo a change process. The process provided people with a language which enabled them to more accurately articulate their needs and which in turn opened them up to new experiences. Latour remarks: … an inarticulate subject is someone who whatever the other says or acts, always feels, acts and says the same thing … in contrast, an articulate subject is someone who learns to be affected by others – not by itself … a subject only becomes interesting, deep, profound, worthwhile when it resonates with 1 I note here that Latour’s sense of the social force is highly consistent with Durkheim’s (1971) concept of the social fact (discussed earlier). I would suggest that a close reading of Durkheim makes it evident that he also saw such facts as culturally created and situationally specific. 87

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others, is effected, moved, put into motion by new entities whose differences are registered in new and unexpected ways. Articulation means … being affected by others (Latour 2004, p. 10).

Latour continues: The decisive difference of articulation over accuracy of reference is that there is no end of articulation whereas there is an end to accuracy. Once the correspondence between the statement and the state of affairs has been validated, it is the end of the story … there is no such trauma with articulation because it does not expect accounts to converge into one single version that will close the discussion with a statement that would be nothing but a mere replication of the original (Latour 2004, p. 210–11).

At first glance, getting a nose for perfume may seem somewhat removed from the stigma associated with living with hearing disability. But be it perfume, coffee, cheese or wine, status and therefore identity issues are on the table here. And hence the relevance of Latour to this discussion, not just with regards to good process, but with regards to social identity. Theoretical Underpinnings of the Montreal Program

Having drawn out some key insights from Latour, I now wish to consider and discuss the Montreal Program in the light of Latour’s insights. Again, I will use the language of the time, as this is the language which was used to develop the framework which underpins the Montreal Program, noting that the process facilitates people engaging with hearing impairment within the existing discourse, but in turn facilitates the emergence of a social identity (as discussed in Chapter 2) centred on a shared experience of living with hearing disability. The Montreal Program is a process which enables people to engage with being affected in the context of contested and stigmatised identity. Indeed, the Montreal group saw stigma as a central issue associated with hearing disability. Recall for a moment the key premises that underpin the Montreal Program: • hearing impairment is a highly stigmatised condition • the effects of hearing impairment are often misperceived by the affected

people and significant others as interpersonal conflicts

• people with hearing impairment are reluctant to acknowledge hearing

disability

• a disconnect emerges between how one acts and the outcomes of these

interactions, evidenced in the presence of relational conflict, and 88

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• as a result of these barriers, people with hearing impairment do not seek

professional help in order to improve their condition.

Using the example of changing hearing we have an experience which is typically slow in onset, where day-to-day changes in lived experience are barely perceivable, unnoticeable and non-dramatic and where the need for any personal or social change is not readily apparent. That is, one does not realise that one is affected. As a consequence, it is not apparent to the person that their social outcomes are affected by hearing disability, yet social engagements begin to be associated with conflict and misunderstanding. One misperceives what is going on. Moreover, when one begins to recognise in given moments that one may be affected by hearing disability, one is reluctant to engage with such an experience because the social position one would align with is highly stigmatised. Building on these implicit insights, Hetu and Getty (1991) proposed a multi-staged process of engagement and sensitisation which enabled people to recognise that they (and those close to them) have been affected by hearing disability. Moreover, the program enabled them to engage in a change process which would make room for hearing disability, as a social identity and way of being, within their lives. Consistently across these groups people had had the inherent fear of identifying themselves as a person with hearing disability. In the everyday transactions of social life (to differing degrees), they feared for the legitimacy, albeit the integrity, of their social identity. The theoretical perspective inherent in the work of Hetu and Getty (1991) (and developed further in this book) argues that reluctance and misperception interact with each other in a psycho-dynamic manner such that these dynamics set up barriers to change. At the personal level, the affected person does not realise, or is understandably reluctant to acknowledge, that the way they interact with others has changed. Such individuals need to be able to recognise how they are affected by changes in their hearing before they can negotiate new ways of interacting. In the face of stigmatisation, people need to go through a maieutic process (Evans 2009) wherein they find personal legitimacy in who they are and where they are situated in the world. Since substantive barriers exist to people taking ready action to seek hearing help, a traditional approach to hearing help centred on a medical model is not going to work for everyone. This is because such models of help do not enable the individual (or society, as a whole) to address stigma and its concurrent marginalising social processes. Similarly, people who do not see themselves as being affected by a specific social condition are not going to take action, or seek the support of others, to address it. Traditional approaches to hearing help were particularly insensitive to the unequal power relationships which are presented in everyday communicative interactions. They did not take into account what was really happening with regards to people’s social position in everyday social encounters, nor did they appreciate just how 89

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difficult it might be to do the various things hearing culture presently expects people to do. Interestingly, the theoretical assumptions which underpin Hetu and Getty’s approach have not been systematically tested. Hogan et al. (1994) successfully tested the Montreal Program’s approach to engaging people with hearing disability in a change process. However, beyond the initial papers outlining the theory (which stemmed from qualitative research), there are no studies which examine the concepts of reluctance and misperception per se. If people do not in fact experience reluctance and misperception, the Montreal Program as a conceptual model, falls over. It is important then, before proceeding to argue for the need for change to a social approach to hearing services, that the assumptions which are central to the proposed paradigm shift be tested (that is, that people experience reluctance [underpinned by a fear of stigmatisation] and misperception of being affected, which inherently impacts on the more effective management of hearing disability). Testing Reluctance and Misperception

In developing the Montreal Program, Hetu and Getty (1991) developed a profile of the needs of workers with noise-induced hearing impairment based on the results of consultations with a large sample of workers in a steel mill (N=965). This work in turn informed the development of their hearing and listening skills program, the English version of which can be found in Hogan (1992; 2001; 2008). Central to the development of their program was a recruitment strategy which was designed to enable the person with hearing disability and their partner to become open to the possibility that a problem with relationships and social participation, as a result to changes in hearing, might exist. The recruitment strategy was based on a series of questions which were designed to facilitate a discussion with the affected person and a significant other about the impact of hearing in their lives. The questions centred on the dynamics of reluctance and misperception. I have worked to refine these items over the past two decades. I propose that these questions can be grouped on three sub-scales: 1. social participation – the extent to which one is aware of the impact of

hearing impairment on social participation

2. stigma – the extent to which one is aware of feeling awkward or embarrassed

as a result of communication breakdown or other communication difficulties, and 3. reluctance to acknowledge hearing disability and related conflicts.

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In addition to these items, within the theory underpinning the Montreal Program, misperception (the extent to which the person links their communication difficulties to their hearing impairment) is a final factor. However, by the very nature of this variable, this outcome needs to be assessed in the light of personal insight about the extent to which one may be affected by changes in hearing status. Perspectives of People with Hearing Disability

As evidenced by the material cited in this book, I have applied the Montreal Program with a wide variety of groups of people with hearing disability. Uniformly, peoples’ reports on their experiences of hearing disability are consistent with that reported in the Montreal Program. I recount here peoples’ expressed experiences of reduced social participation, embarrassment arising because of hearing difficulties, its impact on their confidence and subsequent reluctance to want to identify as having a hearing disability. In reporting this work I draw on both qualitative and quantitative data to illustrate these points. In our original study (Hogan 1992; Hogan et al. 1994), workers with industrial deafness reported on their experiences. When asked about how they felt about participating in a program one worker reported that he ‘wanted to do the program but “held back”’ (Hogan 1992, p. 150); this kind of experience being an expression of reluctance and the fear of being discredited. Of the 33 workers participating in this original study, everyone identified that managing communication in difficult, noisy settings was problematic for them. In addition 16 (50 per cent) reported feeling a loss of confidence and a sense of social isolation while 14 (42 per cent) directly reported problems managing stigmatising situations (Hogan 1992, p. 125). Their partners (n=29) agreed that managing communication in difficult, noisy settings was problematic for them as well (as they sought to assist their partner to participate in communication). One third of the partners reported feelings of guilt and frustration, because of the communicative difficulties their partners experienced. Faced with the idea of participating in a social activity, such as a family birthday party, one third to a half of the people with hearing disability felt that they would have to endure communication problems and that the best they could hope for was to endure the experience with support. As one worker remarked: I didn’t want to rock the boat. It’s easier to walk away! My wife would ensure that I found a good place to sit for the night. Wife would repeat parts of the conversation for me so things would be OK. I’d have to give extra attention. (Hogan 1992, p. 144). 91

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The workers’ partners provide quite specific insights into the difficulties the workers faced in social settings. When asked how their partners would cope in a setting such as a birthday party they remarked: He would go off somewhere to find a quiet corner; attach themselves to someone; maybe he’d ask to leave if it’s too much; say he can’t hear, individually say he’s having trouble, change his position but wouldn’t try to change the situation. There would be embarrassment; he may miss out on conversations, we’d ask people to repeat things or leave early; I’d say “I’m sorry I missed that, could you repeat it for me”; He just wouldn’t go because he wouldn’t enjoy himself, he wouldn’t hear anything’ (Hogan 1992, p. 145ff).

When faced with the possibility of changing things, the partners reported that problems with embarrassment arose – they did not want to offend people by asking for inclusion. Having completed the Montreal Program 55 per cent reported feeling more at ease with their hearing difficulties and 52 per cent reported being able to acknowledge their problems to others. Reflecting on the change process workers commented that: I withdrew in a shell, but I changed all that, I can live in this world like everyone else … I know what the problem is now and I can handle it better. I feel more confident that I have a hearing loss because I know what to tell them. Now I know what it is I’m more aware of hearing loss and I know its not just me the “silly old bastard” (Hogan 1992, p. 157).

Half of the partners reported that they found the Montreal Program useful and informative and one third reported that communication had improved at home. Reflecting on the change process partners commented that: before it didn’t matter that he couldn’t hear – now it does – he says ‘forget about it’ less now. (He) listens more carefully, doesn’t ‘twist’ words around. they feel more at ease (with hearing loss). You gave (my husband) back to us and the human race (Hogan 1992, p. 158). 92

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It would be quite reasonable to accept these insights at face value as the findings of a one off evaluation study conducted 25 years ago and, in turn, set them aside for the same reason. However, we have seen these outcomes repeated in a series of applications of the project across differing groups of people with hearing disability, across time and across nations. In our most recently completed study of hearing disability among Australian farmers (see for example Hogan et al. 2015) the same group dynamics and experiences were observed. The preprogram assessment protocols similarly showed evidence of the experiences of reluctance, misperception and stigmatising experiences. The results are quite informative. On the one hand 22 per cent agreed that hearing disability reduced their confidence; 7 per cent said it left them feeling stressed and tired, 30 per cent reported interpersonal conflict and 29 per cent reported being socially excluded. On the other hand, 20 per cent were non-committal as to whether hearing disability reduced their confidence; 11 per cent with regards to feeling stressed and tired, 13 per cent with regards to interpersonal conflict and 29 per cent with regards to being socially excluded. Following the intervention the number of people noticing the stress effects of hearing doubled while the proportion of those who were unsure rose by 50 per cent. Importantly, after the intervention, more than two thirds of participants reported being more able to manage their hearing problems with only 10 per cent reporting not feeling more competent post-program. In a similar study in New Zealand 31 per cent agreed that hearing disability reduced their confidence; 22 per cent said hearing disability left them feeling self-conscious at least half the time, and 24 per cent said that hearing disability reduced the enjoyment they got out of social activities. In 1998 I published a paper on social identity and hearing (Hogan 1998). The paper reported on a qualitative study of people who acquired profound hearing impairment. The paper spoke at length about the personal experience of stigma related to living with hearing disability: • I was becoming very much an introvert, that I was isolating myself from

people. I didn’t want to go places because I knew I couldn’t talk to them and so forth. • You didn’t have to be embarrassed about having the hearing aid sticking [out of] your ear like this body aid, like this big ear piece here or cords showing and all that sort of thing. • But I would not call myself deaf or fully hearing mind – somewhere in between the two which gets a little bit awkward. It’s like sitting on a picket fence and it gets very uncomfortable. • The big problem with the hearing person (who) goes deaf is they have been brought up with the idea that the Deaf are weird and they’re frightened of moving over there. Frightened of going out on their own, 93

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frightened of having their own foundations torn up. There is still a need to bridge that gap – and it is important to still operate in the hearing world – but you are under stress … You’ve got to battle to bridge that gap yourself – so there’s a real need for the deaf, the hearing people to try to move towards the deaf world, for their own good. The more they can relax, the better they cope, plus you find yourself as a person of some worth. The stigma of hearing disability can be particularly manifest in the workplace. Take for example the insights we gathered from a group of workers with severe to profound hearing loss in New Zealand (Hogan et al. 2002). • I was judged for my hearing rather than the work that I was doing. • Without your hearing your confidence goes … Rather than pushing

• •

•

•

yourself forward and talking to people, you sit back and let them talk to you. If they don’t want to talk to you, you say tough bickies (After) I lost my hearing I was unemployed for 18 months, then I was given a job as a nurse aid because they didn’t want me to be a registered nurse I had to do everything that they gave me regardless of what sort of work it was. I would think, look nobody else would want to do because it was a dirty old job or something like that. So, “oh, give it to Alan he’ll do it, he won’t mind”. … . you were doing everything to hang on to a job. You had a job, and you were damn lucky to have a job and you did everything you could to keep that job. You knew if you lost that job, you would be very lucky to get anything else. You have to prove it. You have to work really hard. During the 20 years or so I have been working here I have found that I have simply had to work my butt off to prove that, while I couldn’t hear, I was better than anybody else in my job and it was just simply by sheer guts and hard work. You have nothing else that you can do … . you have just got to get into it and prove that you can do even if you can’t hear, this doesn’t stop you from doing the best at your job, better than anybody else. I feel that I simply had no alternative.

What is particularly important to take in, with regards to these personal experiences of hearing disability is how the dynamic of the sociology of the breach operates. This idea suggests that one can learn a great deal about what happens to the average person, by studying what happens to people at the extremes. Whereas some of the examples above directly concern people with more profound levels of disability, we must keep in mind that people with less severe experiences of disability, particularly those who hide their disability, 94

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observe what is happening to those who cannot hide their experiences. These observations enable others to make an assessment of how they may be treated if they too are identified as having a hearing impairment. A fear of stigmatisation can gain an enhanced legitimacy as one sees others being poorly treated. What is also evident from the data presented above is that there are a variety of experiences of reluctance, misperception and isolation – not everyone experiences exactly the same thing in the same way. There are matters of degree and intensity at play. For this reason, social scientists often find it useful to develop psycho-graphic profiles about groups of interest, so that insight can be gained into the varying ways social dynamics of interest are experienced. Cluster analysis is routinely used for such a study. I have already published work on the notion of peoples’ readiness for hearing services (Hogan 2009). Below I wish to extend this work by reporting on further analyses of these data which is based on a representative survey of 400 people, aged over 55 years, who identified as having a hearing disability. While there was evidence of social interactional difficulties, reluctance, stigma and misperception among the whole sample, for the sake of this exercise, and to be consistent with the Montreal Program, I focus here solely on those respondents who as yet had not taken action to manage their hearing disability (n=150). A cluster analysis groups together people who are similar on a number of attributes, in this case the attributes were social interactional difficulties, stigma and reluctance. Figure 5.2 is read by considering a score of zero as average. Scores above the zero mark show that members of that specific grouping on that variable scored highly or more positively on the attribute of interest. Similarly, scores below the zero mark show that members of that specific grouping, on that variable, scored negatively on the given attribute of interest. The analysis broke respondents into five groups; which, based on the themes arising from their results of the combination of attributes, I have named as follows: • Group 1: managing hearing problems is stigmatising • Group 2: misperceivers – identifies stigma but not its causes • Group 3: less likely to report or identify any hearing problems they might

have

• Group 4: reluctant to acknowledge difficulties but are not reporting

being stigmatised, and • Group 5: reluctant to acknowledge that social interactional problems they are experiencing are stigmatising.

Group 2 (Misperceivers) made up the largest group with 30 per cent of the respondents, followed by Group 1 (20 per cent), who face the challenges of being able to manage their hearing interaction difficulties but become stigmatised while doing so. 95

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Figure 5.2

Cluster groupings of people with hearing impairment by Montreal criteria of reduced social participation, reluctance and stigma

Table 5.1 below contrasts the segmented groups by self-reported degree of hearing disability. Interestingly, while all groups report stigma (between 47 and 91 per cent), increasing degrees of interactional difficulty are associated with a greater likelihood of being stigmatised. Misperception, as proposed within the Montreal Program is a key differentiating factor with between 35 and 55 per cent reporting experiences of misperception. One can see in the data that people can recognise that they are having difficulties, but they do not necessarily connect the social dynamics of hearing as being at the basis of their interactional problems. This dynamic was particularly apparent in my earlier work with people who identified as having a profound hearing impairment (Hogan 2001). By contrast, reluctance is more associated with lesser degrees of interactional difficulty. That is, it is more difficult not to acknowledge hearing disability when the interactional problems versus participatory needs are more pronounced. For those experiencing less severe interactional difficulties the nature of hearing-related participative difficulties can be confusing since one can typically hear in some circumstances, but not others.

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Table 5.1

Cluster segments by degree of hearing impairment Group 1: Managing hearing problems is stigmatising

Group 2: Misperceives – identifies stigma but not its causes

Group 3: Less likely to report problems

Group 4: Reluctant to acknowledge difficulties

Group 5: Reluctant to acknowledge that social problems are stigmatising

Mild

12 per cent

25 per cent

16 per cent

37 per cent

10 per cent

Moderate

30 per cent

20 per cent

15 per cent

25 per cent

10 per cent

Severe

36 per cent

46 per cent

0 per cent

9 per cent

9 per cent

Table 5.2 examines membership of cluster groupings by common hearing interactional problems identified within the Montreal Program. I examine this output mostly with a view to looking for content validity within the Montreal Program’s engagement items. One would expect to see an alignment between the themes of the cluster groupings and the associated individual problems.

Group 4: Reluctant to acknowledge difficulties

86

94

80

80

73

ns

Pretends to hear/avoids repeats

78

65

59

57

87

.03

People complain I don’t hear the doorbell

36

19

9

15

13

.05

People complain TV to loud

43

49

41

39

67

Ns

At times I feel left out

71

51

27

40

66

Ns

I notice my problems more these days

71

84

50

68

93

.02

97

P value

Group 3: Less likely to report problems

Difficult to hear in background noise

Group 5: Reluctant to acknowledge that social problems are stigmatising

Group 2: Misperceives – identifies stigma but not its causes

Cluster groupings of people with hearing impairment by Montreal criteria of reduced social participation, reluctance and stigma (agrees per cent)

Group 1: Managing hearing problems is stigmatising

Table 5.2

HeaRiNG IMpaiRMeNT aND HeaRiNG DiSaBiliTY Often come into conversation on wrong topic

43

22

0

15

40

.02

Hearing impacts on my relationships

50

16

5

9

46

.001

Difficulties coping in social settings

43

0

0

4

33

.001

Difficult coping with people who do not understand my problem

40

14

5

9

34

.001

Prefer to put up with problem than get hearing aids

11

5

14

30

67

.001

If can’t understand, ask for repeats

70

97

99

72

73

.03

People don’t know I have hearing problem

55

72

65

51

60

.001

Group 1: Managing Hearing Problems is Stigmatising

Group One reports that managing hearing disability is stigmatising. The issues which they most identified with, within the Montreal Program recruitment protocol, were: • • • • •

pretending to understand what was being said to them (78 per cent) avoiding asking people to repeat what was said (71 per cent) feeling left out (71 per cent) noticing problems more these days (71 per cent), and then asking for repeats (of what was said) when they are having trouble following conversations (70 per cent).

The first three reported problems are very consistent with the Montreal Program, noting that people fear being stigmatised and seek to avoid drawing attention to their hearing. The last point (asking for repeats), while at first contradictory, can be more easily understood with regards to the earlier attempt at stigma management in difficult communication settings. Perhaps the first option is to bluff or pass, pretend to understand and hope to get by, bearing the social consequences of one’s decision. This may at times mean finding oneself in awkward situations and experiencing embarrassment when communication breaks down.

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Group 2: Misperceivers – Identifies Stigma but not its Causes

Consistent with the Montreal Program, the profile of Group 2 suggests that members of this group misperceive the effects of managing hearing disability. The most consistent level of insight offered by members of this group is that they: ask for repeats if they do not understand something (97 per cent) notice having problems hearing in background noise (94 per cent) notice hearing problems more often these days (84 per cent) assume that people do not notice that they have hearing problems (72 per cent), and • pretend to understand what was being said to them (65 per cent). • • • •

Interestingly, misperceivers have the largest proportion (46 per cent) that reported more severe hearing difficulties. By contrast misperceivers rated interactional problems quite lowly with only 16 per cent identifying impacts on relationships while none reported having difficulties in social settings. There is an evident disconnect here, consistent with the concept of misperceiving one’s difficulties in social settings – having problems hearing, particularly in noisy social settings but having no problems hearing in social settings or with relatives or friends. Would not one spend a majority of their social life socialising with family and friends? Group 3: Less Likely to Report Problems

Consistent with the theme of being unlikely to report having any problems, members of Group 3 report few problems and are less likely to report participative difficulties: • asking for repeats if they do not understand something (99 per cent) • notice having problems hearing in background noise (80 per cent) • assumes that people do not notice that they have hearing problems (65

per cent), and

• pretending to understand what was being said to them (59 per cent).

There is an element of the dynamic of reluctance to acknowledge difficulties about this group, perhaps though at a less conscious level than members of the remaining groups. Unlike members of Groups 1 and 2 where one in four reported they would wear a hearing aid only if they absolutely had to, just under one in two of this group reported a strong resistance to accepting a hearing aid. The rationality of members of this group also validates the Montreal Program insight that the brunt of hearing interactional difficulties is 99

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often borne by partners and significant others. Members of this group appear to think that is it quite okay to simply and persistently ask for people to repeat what they say. Group 4: Reluctant to Acknowledges Difficulties

By contrast, members of Group 4 are evidently reluctant to acknowledge their hearing disability. While they report difficulties in background noise (80 per cent) and notice their problems more frequently (68 per cent), they are much less likely to actually identify any specific hearing difficulties. They were also the least likely group to report that others were aware of their hearing difficulties, despite one third of them reporting moderate or more severe hearing difficulties. Like members of Group 3, just under one in two of this group reported a strong resistance to accepting a hearing aid. Group 5: Reluctant to Acknowledge that Social Problems are Stigmatising

Members of Group 5 most fully embody the combination of difficulties identified under the Montreal Program – stigma, fear of it, reluctance and misperception. Common difficulties included: • asking for repeats if they do not understand something (97 per cent) • noticing hearing problems more often these days (93 per cent) • pretending to understand what was being said to them and avoids asking

for repeats (87 per cent)

• noticing having problems hearing in background noise (73 per cent) • then asking for repeats (72 per cent) • assuming that people do not notice that they have hearing problems (60

per cent).

While proportionately the smallest of all the groups, just under two thirds of this group reported a strong resistance to accepting a hearing aid, despite having almost equal membership in each of the three groups by rating of severity of hearing difficulties. An Action Based Process Centred on Problem Solving

Taken together, attributes of the key elements of the Montreal Program (stigma, fear of it, reluctance and misperception) are evident in the self-reported experience of people living with varying degrees of hearing impairment. As such this study and those I have previously conducted (for example, Hogan et al. 2009), provide 100

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empirical support for the assumptions which underpin the Montreal Program. This finding has significant implications for existing individualising models of hearing service delivery which assume that clients need to be motivated in order to address their hearing disability. By contrast, the Montreal Program, and the data reported here, and elsewhere, demonstrate that significant psychosocial barriers exist to the more effective engagement of people with hearing disability in a change process. The question of course (which has been an issue for people engaged in hearing services for decades) is exactly how one does this, particularly at a societal level? One thing is for sure, persisting with a service model that does not address these very real needs of people with hearing disability is not going to result in a better outcome. To date the only model that I have studied or used to date, that is able to overcome these barriers to change, is the Montreal Program. The Importance of Adopting the Principles of the Montreal Program

First and foremost, researchers and practitioners from across the globe are in agreement that stigma is a central barrier to the more effective management of hearing disability at the personal and family level. Second, my work has demonstrated the validity of the dynamics of reluctance, misperception and the proposed fear of stigmatisation. It has also demonstrated that the Montreal Program engagement process has the capacity to engage people in a manner that enables them to move through the barriers that prevent more effective action on hearing disability. Third, the Montreal Program (based as it is on a group process) facilitates a problem-solving interaction centred on a series of objectives such as sharing common experiences of living with hearing disability and the development of specific communication skills: About 50 per cent of the total meeting time is devoted to participants’ expressions. For this reason, the program is not a course, but rather a group process (Hetu and Getty 1991, p. 47).

In Latour’s (2004) view, this is a process of articulation, of opening up the subjective space, rather than closing the reflexive process via the use of positivistic language. Melding Latour’s insights with the objectives of the Montreal Program problem solving process (Getty and Hetu 1991, p. 47) we can see that this process is concerned with: 1. enabling people to realise that they have been affected by hearing

impairment by offering psychosocial support as they come to realise how hearing impacts in their daily lives 101

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2. enabling affected individuals and their spouses to better deal with the

effects of the hearing impairment, and

3. enabling participants to develop new skills that to cope with the social

impacts of the hearing impairment.

I add in a fourth step here: 4. enabling collective behaviour focused on social change.

In the original program the first three objectives are addressed. First participants are provided an opportunity to acknowledge and identify the difficulties caused by their hearing impairment – that is, how am I affected? Participants are asked ‘what’s the worst thing about having (or living with a person who has) a hearing loss?’ Support is given to participants as they describe the difficulties they experience. Since not all participants can readily express the difficulties they experience, the group process provides a vehicle for the group leader to assist such participants to compare and contrast their experiences with those of the more articulate group members. These themes of mutual support and problem identification are then continued throughout the rest of the program as participants explore issues about the nature of hearing impairment, its impact on their lives and options to manage the same. The second program objective of understanding the nature and consequences of hearing impairment is realised as participants and facilitator(s) share their knowledge of hearing impairment and some of its effects – such as stress related problems and reduced pleasure from social occasions. Information is not presented in a lecturing style: rather, as new topics are introduced, the facilitator draws on the experience and knowledge of participants to draw out the issues and to facilitate problem identification. For example, a party scene is presented, where participants are asked to suggest the types of difficulties a person with hearing impairment might experience. Participants are then encouraged to identify particular difficulties they might have in such a situation and to identify strategies as to how such difficulties might best be managed or overcome. If a participant gets stuck, other participants are encouraged to suggest ideas which might be of assistance. The third objective of problem solving or skill development is then realised in quite practical ways. To reinforce the learning process, participants have opportunities to role play effective communication strategies. As we saw in previous chapters, a lot of change needs to occur in terms of individual and social identity, as well as within family and social dynamics, as people begin to more fully realise how they have been affected by hearing impairment and how they, as individuals and collectively, are going to address such impacts. These changes do not necessarily happen quickly and at the end 102

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of the program – many people are just beginning to be ready to contemplate change. It follows then that the fourth step, of galvanising people into collective action will be a long and slow process. This step in the process brings forward an insight that can be readily overlooked. The Montreal Program was based on the insight that the provision of information about what one needs to do to manage hearing disability is insufficient in itself to facilitate identity and subsequent behavioural and social change. The intervention proposed that the therapist’s task was to enable the person to ‘acquire the ability to do what he or she knows should be done, … to actualise an ability the person already has’ (Evans 2009, p. 43). What was not readily understood about their intervention was that the process is not so much concerned with identifying a range of needs that require action. Rather, the intervention enables individuals and their social groups to recognise that they are affected and to make room for new behaviours within their existing patterns of interaction that affirm each person’s membership of the social network. This is the essence of the maieutic process – people move from a cognitive awareness of the issues towards actively engaging in a process that enables them to relate the need for change to themselves. This in turn addresses what being affected by hearing disability means for them as individuals, for family, and for friends. The process uses practical exercises centred on ‘I’ statements to facilitate identity change. It leads participants through the process of saying that ‘I’ have difficulties, of identifying available social support to address not just their communicative needs but their rights to social inclusion, and role playing requests where ‘I’ secure peoples’ support through shared changes in behaviour. In this way participants experientially learn that not only do their family and social networks want change to occur, but they will actively provide such support. The outcome is the development of shared strategies to ensure supported participation rather than passing within a ‘hearing’ group. These exercises help people to integrate hearing disability into their social and personal identities. To this end Hogan et al. (2011) proposed one further extension to the Montreal Program. After the program’s follow-up visit, they took the view that it would be beneficial for the service provider to facilitate a home-based discussion group. Within this group, other family members and key friends, may participate in a mini-program (for example, an ‘unfair hearing test’, as well as bar-b-que and dinner party exercises), so that they too can be sensitised to the issues impacting on the person, and learn how they can help to ensure participation (Hogan et al. 2010). This strategy serves two purposes. Beyond educating key people in a person’s social network about hearing disability, it also legitimises changes to how people will interact in the future. As such, this strategy incorporates hearing disability as part of the group’s shared social identity, facilitating greater inclusion and de-stigmatisation. The maieutic 103

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process once again comes into play. Not only do close friends and family gain knowledge about hearing disability, they also learn to change their assumed norms of communication and make room for hearing disability in the way they understand and act within their social group. A follow up strategy is put in place to provide continuing support as people work their way through the change process. Supports have included follow-up letters, telephone calls, and a further meeting some months later to monitor progress. In the 25 years or so since the Montreal Program was developed, we have witnessed significant technological change. Today, many readers could readily see how much of this program could be offered within an on-line forum, with various forms of support being provided through SMS and email. Given the personal responses associated with experiences of stigma, the e-learning environment has much to offer people as a tool which can support the change process.

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Chapter 6

Societal Change: Towards a More Comprehensive Re-structuring of Hearing Services Anthony Hogan

Review

Chapter 1 provided insightful documentation into the social position of people with hearing disability. It brought forward the issue that people who experience hearing disability are significantly disadvantaged and marginalised in our society. In Chapter 1 we also saw that a core element of this marginality is socially constructed and stems from unexamined historical notions of disability wherein difference, associated as it was with notions of a threat to civil order, was something to be feared and consequently stigmatised. Similarly, through a socio-historical lens we saw how people with disability were marginalised in employment as a result of 19th century processes of institutionalisation. These processes left people with disability segregated from society and left to work in sheltered employment. It was also evident that with the birth of neo-liberalism, the ideological position emerged that good citizens were those who were socioeconomically self-sufficient. In the ensuing 100 years such values were deeply written into the taken-for-granted, doxic nature (Bourdieu 1990) of everyday society. The design of disability services fell within the contradiction that these competing approaches to social participation set up. During these one hundred years, several systems of intervention for people with hearing impairment emerged in western society, with one model, a deficitbased, device-centric model, gaining prominence. This book has demonstrated how citizen-centric models concerned with the social wellbeing and citizenship rights of people with hearing disability have been largely marginalised by the dominance and success of the device-centric model supported as it is by ableist values, paternalism and corporate investment. Through a Foucauldian analysis of the systems of governance it was shown how beliefs were embodied and deployed through institutions and practices, and as a consequence of these socialising processes certain values became engrained in the habitus (or the collective conscious if you prefer) as these attitudes and practices became

HEArING ImPAIrmENt AND HEArING DIsABILItY

taken-for-granted within a phono-centric culture. In turn significant social pressure came to be focused upon a person with hearing impairment (both externally but also internally) to comply with the norms of a phono-centric society. The phono-centric nature of much disability policy has a focus on the participation of people with hearing disability within a so-called mainstream culture that makes little if any accommodation for people who participate in communicative interactions differently to others. Western society places a high value on economic self-sufficiency. Historically, deafness only became a social and moral problem when the social and economic system that provided support for deaf people prior to urbanisation and industrialisation dissolved (Hogan 1997). Various segments of the community, including deaf people found themselves without the skills required to participate equally in this new society. The modernist era required that citizens obtain competitive educational and work skills so that they could provide for themselves as members of an econo-centric society. It was demonstrated in Chapter 1 that significant problems exist with regards to the extent to which people with hearing disability have been able to take their place in the world as equal citizens. Just as women have faced a glass ceiling, people with hearing disability have faced glass walls. Skill-for-skill they are under-employed and underpaid – gender and ethnicity add further layers to the experience of disadvantage. Within a phono-centric culture, manifestations of hearing impairment forced an individual to work harder than others to retain their place in valued social and employment networks. Prior to the onset of impairment, participation in, and membership of, a hearing culture was taken for granted. However, the experience of disability contests the common-sense validity of daily practice. In consequence, a new sense of personal coherence and social continuity has to be worked out within a context that requires the person to ‘overcome’ their impairment (and its social consequences) by conforming with certain prescribed behaviours that are consistent with expected forms of phono-centric daily life, irrespective of the benefits resulting to given individuals. These behavioural accommodations of commonly accepted practices facilitate the ‘dissolution’ (Fulcher 1993) of the experience of hearing disability as difference by disintegrating the existence of hearing impairment by focusing on hearing and speech. An ongoing, coherent sense of self may be negotiated in a manner that enables the person to integrate themselves in networks that they value, utilising communication processes (such as aids, devices; communication tactics etc.), that when mutually supported, legitimate the lived experience of hearing disability. However, this does not frequently occur. Rather, people living with hearing disability are expected to remake themselves as hearing people. For the most part, people living with hearing disability are aware of, and defer to such, expectations and for about one third of this cohort, this deference has meant that they have embraced technology, irrespective of its costs and limitations. 106

SOcIEtAL ChANGE

As this book has developed over the past five years, no one who has read earlier drafts of it has denied the need for, or the rationality of, a change agenda. The demand for change is evident even if it is yet to manifest itself collectively in demands for social reform. In addition, as brought out in Chapter 4, this book has demonstrated that there is significant precedent and justification, in policy terms, for policy makers to make a ready case for progressing such change. Looking forward with the benefit of hindsight one can envisage at least four areas that a change agenda needs to focus on. These would be: • • • •

Completing Foucault’s process of change Enhanced governance of hearing services Consumer control of hearing services policy, and Structuring for change –– New approaches to service delivery that particularly address stigma and social identity –– Diversification of (i) the service model, (ii) of providers of hearing services and (iii) of the training of hearing health professionals. –– Greater public accountability of manufacturers and providers –– Bringing hearing services policy in line with broader disability social policy –– Improving the acoustic accessibility of public spaces –– Outcomes based program focus, and –– Financial support for social research into hearing disability.

The following sections give each of these issues further consideration. Completing Foucault’s Process of Change

Central to any change agenda is the emancipation of individuals from oppressive social processes. For Freire (1972) such emancipation came about as people came to realise how they had been indoctrinated into a reality that served to marginalise and oppress them. For me, Foucault’s project has been essential in bringing forward an approach which enables individuals, and in turn, their emergent collectivities to recognise the impact of productive approaches to the exercise of power (Sawicki 1991, p. 95ff), and in particular to begin to see the capacity that certain institutions and their practices, at a micro-level, have on how we and broader society approach the formation of the body in one fashion (e.g. a person with hearing impairment) rather than another (e.g. a signing Deaf person). This in particular, was the insight that I brought forward in 2001. Working within a Foucauldian approach, Sawicki (1991) contends that people may progress towards emancipation when they begin to recognise the impact 107

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of regulating regularities (or what Bourdieu referred to as the structuring structures) on the formation of the self: ‘our freedom consists in our ability to transform our relationship to tradition and not in being able to control the direction that the future will take’ (Sawicki 1991, p. 99). Resistance to oppression emerges in a context wherein individuals reject the fixing of identity and praxis that stems from institutionalised approaches to the formation of the self as individuals contest the self-evident justifications that exist within dominant discourses such as about the nature of disability. Freedom, Foucualt held, is realised in being ‘able to question and re-evaluate our inherited identities and values, and to challenge received interpretations of them’ (Sawicki 1991, p. 101). For change to occur, people with hearing disability will need to engage with the insights that this work has contributed to understanding the governance of hearing disability. If correct, the perspectives brought forward here (as with the recent publication of A Fairer Hearing; Hogan et al. 2014) will not only deeply resonate with lived experience but provide a framework from within which people can begin the process of remaking themselves with the legitimacy of uncontested personal practice. Approaches to service delivery and community education can greatly assist with this process. Yet at present, there are no social communication programs that legitimate the lived experience of hearing disability; access to personally emancipating processes, such as the Montreal Program, are few and far between. For change to be realised, these first steps must happen and arise as a priority in the change process. Western societies are in a period of transition as they move away from unexamined values of disability that have their origins in societies of days gone by, to a more contemporary understanding of disability in terms of difference and citizenship. And following Foucault’s model, we will in turn gradually see the emergence of institutions that embody these values and that seek to deploy them through new ways of organising the self and the social. But as insights from other social movements (e.g. gender, race, sexuality) show this is hardly a fast or linear process. And notably the process has to be led by those who find themselves affected. To this end, people with hearing disability will be at the forefront of identifying those notions, words, adages, labels and processes that stigmatise or marginalise them. They will no longer be content with half a social outcome provided by an expensive service provider who has little or no interest in them beyond the sale of a device. Importantly, they will move to take control not just of the services they wish to use, but to control the policy framework within which such services operate.

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SOcIEtAL ChANGE

Governing Governance

This book has disputed (i) the unexamined assumptions about the negativity of the experience of disability, (ii) the privileging of forms of communication which do not necessarily benefit the person with hearing disability, and (iii) the absence of any endeavours to change the social relations of impairment including the social structure of communication and the built environment in terms of its acoustic accessibility. Hearing services have been operating within a philosophical milieu that has considered it acceptable for professionals to determine the range and nature of services to be offered to, or provided for, people with disabilities. Things have to change. The social impact of various social movements over the past 30 years has seen patriarchy, science and medicine lose much of their privileged positions in broader society. The interests and legitimacy of oppressed groups, such as people of colour, or minority ethnic communities, women, and people who are gay, lesbian or transgender, have gradually received recognition as has the politics of difference in general and disability in particular. Throughout the world, disability groups are contesting the medicalisation of disability and the marginalisation of people with disability. Groups of people with hearing disability are also beginning to join such alliances. In the broader community, people with hearing disability are being recognised as competent and depicted in more positive roles. Consumer Control over Service Policy

Following on from participating in processes that enable people to move beyond the oppression of the self, by the self, as well as others, it follows that people with hearing disability will wish to participate in the co-design and management of hearing services. Yet at present there is still no citizen controlled or dominated process which directly controls service delivery policy development. In Australia, as an example, the sector is represented in policy circles by the Deafness Forum of Australia. This has several limitations. First, it is not a consumer controlled organisation. The Deafness Forum has its origins in the 1990s. At that time the then Commonwealth department responsible for disability services, decided it wished to streamline how it engaged with groups representing various disability sectors; moreover, that a sector such as deafness would have only one peak group and that government would only deal with one group. To this end they chose to fund the Deafness Forum as Australia’s peak group for the sector, pushing together all groups, including service providers, into one entity. This was a supreme act of autocracy that skated over the many cultural and social issues which exist within what we would refer 109

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to as sectors, not a sector. The ontological world view of the Deaf Community, its language, culture and service delivery needs are entirely different to people who acquire moderate to severe hearing impairment in middle to later life and who may benefit from devices, social support and better social inclusion. Second, service providers are entitled to sit on the Forum’s Board. This is problematic at several levels. In such a role, they are able to therefore influence the policy agenda that should come solely from the service user perspective. Moreover there are substantive differences in status, training and education between consumer groups and provider representatives, not to mention communication processes, which may serve to disadvantage people with hearing disability in decision-making processes. And notably, while being able to influence the consumer agenda, manufacturers and providers have established their own lobby group which operates outside the process put in place by government and makes its own representations to senior levels of government; promoting positions which the consumer movement has not been consulted about, nor endorsed. Third, when compared with other disability sector advocacy groups, the Deafness Forum is grossly under-resourced and therefore very limited in the scope of work it can take on. Fourth, while it has a representative who sits on the most influential hearing policy processes in Australia, for example, the ministerial level Hearing Services Consultative Committee (HSCC), this is a committee whose work is essentially closed to public participation and the interests of industry and professional interests are strongly represented on the committee (55 per cent of membership). Finally, as this book goes to press, we learn that the Australian Government has defunded the Deafness Forum. Structuring Change

It is time for paradigm change not simply with regard to what services are provided, but the basis on which they are provided. Central to international conventions is the undisputed right of people with hearing disability and their advocates to be in control of the decision-making processes and services associated with their experience of impairment. These people are active in shaping their own lives and seek to make informed decisions. These decisions relate to people’s understanding of their identity as people with hearing disability and reflect their concerns to get on with their lives as ordinary citizens. Government departments, publicly funded institutions and community organisations are required to recognise such rights and to work with people with hearing disability to see that they are realised. This section looks at some very practical measures that can be taken to put in place structures that will ensure that change occurs not just in the provision of services, but in the social position of people with hearing disability. 110

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New Approaches to Service Delivery

This book has documented the fact that there has been an international push for a paradigm change in hearing services, a push that is backed up by quality research across a wide variety of cultures and contexts. It has shown that when the design of services for people with hearing disability are considered within either a public health or disability policy framework, that significant evidence exists for a change in the way services are provided. So again I assert that first and foremost policymakers must consider, and address a social construction of hearing disability that results in stigma and marginalisation, or the threat of the same. Across western countries addressing stigma and marginalisation has been central to enhancing health outcomes for people with psycho-social disability. The same goes for hearing. In countries such as Australia, there has been no funding for community education programs concerned with living with hearing disability in society for some 30 years. Now, more than ever, when the number of people with hearing disability approaches its peak, community attitudes to and their engagement with hearing disability must be systemically addressed. The evidence presented in this book makes the case that a medico-centric assessment and treatment service model cannot be justified as the singular approach to hearing disability in western society. It is readily evident that adjustment to hearing disability is as much about identity and social networks as it is about audiograms and hearing aids. How can people possibly embrace such a program of personal change when they do not have the opportunity to (i) address these experience of and concerns about stigma and identity (ii) to secure the support and understanding of close family and friends in the change process (iii) to consider the consequences of pursuing devices as distinct from or in addition to hearing aids and the like and that such discussions are facilitated by a person who does not have a vested financial interest in the outcome (iv) to be able to talk through such processes with well-informed, non-tokenistic peer advocates who have already been through such processes, or (v) to negotiate this process with their family from an equal position of power. Diversify Providers of Hearing Services

A key challenge to change in any area of service delivery, is addressing the needs and interests of existing service providers, particularly those who may hold a privileged position or who financially benefit from certain designs of hearing services. I do not contest the skills that existing hearing service providers have in assessing hearing impairment and in the provision of hearing aids. I do strongly contest, however, their claim to be able to address all the psycho-social needs of people with hearing disability. As a cohort (as distinct from individuals with 111

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high levels of expertise), they simply have not had the professional development or training in psychology, the sociology of disability, adjustment to disability counselling and psychological aspects of rehabilitation. I would further contend that an ad hoc lecture on the same does not equate to professional training in these areas which I would regard as critical competencies for practice. Applicants for admission to the Masters in Clinical Audiology, as an example, at Australia’s Macquarie University could come from backgrounds as diverse as physiology, veterinary sciences and audio production.1 Similarly the Macquarie University course outline contains no specific subjects on psycho-social aspects of disability or specific courses in adjustment to disability counselling or client advocacy. Other major training institutions (e.g. The University of Melbourne2 and the University of Queensland)3 have similar entry requirements and programs of education and training. First and foremost new standards need to be set for the training of hearing health service providers so that they are truly equipped to address the support needs of people with hearing disability. Without doubt, this proposal will not be well received by the audiological community and an array of rebuttals will follow. These could include the fact that there is little or no room for additional material in their courses or that these proposals would add an additional year and significant cost to the training of audiologists. Several counter points may be made to these rebuttals. First, the ready alternative is that the audiological community focus on assessments and the provision of devices and that other professionals provide overall case management, counselling, support and advocacy services. In countries such as Australia, there is legislative provision for this to occur but the policy contains inherent contradictions (e.g. who gets to decide who accesses such services; and under funding of the cost of providing such services) that the services are essentially not provided. Various groups of professionals including mental health social workers and rehabilitation counsellors have the necessary skills and experience to provide a complimentary and diverse range of hearing services. Working in conjunction with a clinical audiologist, a very successful delivery of this kind of service model was run at the University of Sydney during the early 1990s and in a small number of community-based services before and since that time (e.g. Victorian Hearservice).

1 http://courses.mq.edu.au/postgraduate/master/master-of-clinical-audiology accessed 5 December 2014. 2  https://handbook.unimelb.edu.au/view/2014/305BB accessed 5 December 2014. 3 http://www.uq.edu.au/study/program.html?acad_prog=5145 112

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Diversify the Service Model through More Informed Outreach and Engagement

The evidence presented in this book has made the case for changes to the service delivery model at three core levels of program development. These services must address: 1. management of hearing disability at the individual level, including

enabling stigma management and identity integration

2. psycho-social aspects of hearing disability, and 3. community level interventions that address stigma management and social

identity and that enhance the acoustic accessibility of the community.

Taking into account the principles of social policy identified in Chapter 4, Hogan et al. (2014, p. 8) proposed a series of policy initiatives which would be needed in order to address the social, health and economic barriers faced by people with a hearing disability. These included: 1. Services provided be focused on ensuring that people with a hearing

disability enjoy: –– equitable economic participation and social inclusion –– choice, wellbeing and the opportunity to live as independently as possible, and that –– families and carers of people with a hearing disability are well supported. 2. Services which address hearing disability take a holistic perspective with the social service model to include, but not be limited to: –– health promotion campaigns aimed at addressing preventable hearing impairment –– community education about the social participatory needs of people seeking access to social and communicative inclusion, addressing but not being limited to people who experience difference in hearing and communication –– community-based delivery of psychosocial support programs tailored to meet the distinct needs of the respective community groups (that is, a broad church of service delivery models and modules) including early intervention for children, and –– education and employment support services. 3. Hearing services be evaluated with regards the actual outcomes they achieve in people’s lives. 4. That existing device-centric hearing services be re-oriented to follow international best practice in client-centred service provision, so that 113

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they ensure their consumers enjoy the fullest and most effective social participation in society that can be achieved. 5. That a strategic public sector community education campaign be launched to address hearing disability in the community. This campaign would address issues of stigma, social participation, the need for personal action and include an educational component targeting medical practitioners and allied health workers. 6. Resources be made available to enable community-based organisations to be funded to provide adequate psychosocial interventions using appropriately trained professional staff (such as social and welfare workers, psychologists and rehabilitation counsellors) 7. Priority be given to a funded program of research that addresses: –– The specific needs of Indigenous peoples, and –– Monitors and reports on the social impacts of hearing disability. Diversifying the Service Model through Information and Enablement Services

Beyond devices, there are any number of service models that could be deployed to support access to and the provision of these services. The structure of the Australian National Disability Service provides a framework for assessing the needs of people with hearing disability and provides funding for client controlled purchase of services. It is simply unfortunate that the construction of disability within the National Disability Insurance Scheme (NDIS) is so narrow that most people with hearing disability are excluded from the program. The existing service model offered by the Australian Government, to eligible clients, through the Office of Hearing Services, could also be reshaped from an inputs model to an outcomes focused program and in so doing once again provide clients with access to vouchers or cash to secure the services they need for themselves. It is just a pity that the group of people who could really make the most of those services, people of working age – are excluded from eligibility (because they are of working age) and thus access to the program. Greater Accountability of Manufacturers and Providers

I trust that it is evident by now that I have never disputed the benefits of hearing aids and devices – I simply take the view that they are not the panacea for all hearing difficulties, that the benefits are often overstated and without doubt, the profit margins on specific devices are offensive if not exploitative. Devices can contribute greatly to the enjoyment of family life and enhance 114

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the capacity of individuals to be more confident in their ability to manage the oppressive behaviour exhibited by a phono-centric society. Devices can reduce the efforts a person has to make to communicate in every-day settings, therein enabling the recipient to concentrate on the interaction rather than the words. However the use of devices can also be exhausting and physically uncomfortable to wear. As one colleague commented, it is like wearing the best looking yet most uncomfortable pair of shoes on the market – one can’t wait to get home and to take them off and just relax. The adage goes that hearing aids can be like microphones without a brain. They do not always amplify that which one wants to hear. The disability advocate Mike Oliver took the view that if meaningful outcomes are to be achieved in disability services, then providers need to work with rather than on people with disabilities (Oliver 1996). There is nothing to prevent service providers from embracing new methods of practice except for the lack of policy, pressure for change or good will. Moreover, current policy settings deployed by governments and health insurers support and legitimate a narrow approach to practice. Providers could readily move away from the negative aspects of the service delivery base that currently exist. Few providers today would say that a hearing impairment is an inherently negative thing. Yet a lot of hearing aid marketing reinforces the stigma associated with hearing impairment. Providers have a corporate social responsibility to destigmatise (rather than reinforce) negative stereotypes associated with hearing impairment. To date only one company that I am aware of, has made any serious attempt to address this corporate responsibility and that is Oticon, through their funding of the Ida Institute in Denmark. Improving the Acoustic Accessibility of Public Spaces

Unfortunately most places of social interaction are noisy and the idea of acoustic accessibility is far from the consciousness of everyday citizens. While we wouldn’t leave a person in a wheelchair outside or deliberately serve wheat to a person with gluten intolerance, somehow it appears to be socially acceptable to expect people with hearing disability to participate in environs that are acoustically hostile or inaccessible. Legislating for acoustic accessibility is a necessary but insufficient step in the change process. If there is no enforcement of such legislation then the passing of such laws merely represents more tokenism.

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Bringing Hearing Services Policy in Line with Broader Disability Social Policy

Over the past 40 years, commencing in part with social movements such as L’Arche and normalisation theory in the 1970s, western society has undergone a huge change in the way it approaches certain aspects of disability. It has intensified its support for notions of economic self-sufficiency while at the same time moved away from institutionalising people with disability. In 1981 the world celebrated the International Year of Disabled Persons4 and within 10 years governments were introducing disability anti-discrimination acts. Yet as Goggin and Newell (2005) observed, while policy on the one hand was promoting the social inclusion of people with disability, a form of social apartheid remained in place. Despite the hype, it still was not ‘cool’ to have a disability and for the most part, people with disability remained excluded from mainstream society. In countries such as Australia a new collection of policies and laws emerged to progress the social inclusion of people with disability. The Australian National Disability Agreement5 (NDA) for example, which is endorsed by the Council of Australian Governments (COAG), serves as Australia’s core policy strategy to address Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities.6 This policy strategy is concerned to see that people with disabilities, and their carers, have an enhanced quality of life and participate as valued members of the community. This policy framework is concerned with recognising the inequitable social position experienced by people with disabilities, and that resources are focused on ensuring that people with disabilities enjoy an equitable social position in our society. The policy framework, however, is inherently linked with a process rather than outcome focused service delivery model. The focus in reporting is on numbers of devices provided, not on the extent to which lives have been improved or the citizenship rights of individuals progressed. With regards to service delivery, the policy framework seeks to progress the citizenship rights of people with disability (Goggin and Newell 2005). However, for this to be achieved a shift is required in the pedagogy which underpins many services. This shift entails changes in the orientation (e.g. medical model versus the social model of disability), and purpose (from inputs to outputs) of services as well as a shift to the control of services by people with disability. It is the purpose of social policy to ensure that service delivery models are oriented 4 http://www.un.org/esa/socdev/enable/disiydp.htm 5   h t t p : / / w w w. c o a g. g ov. a u / c o a g _ m e e t i n g _ o u t c o m e s / 2 0 0 8 – 1 1 – 2 9 / docs/20081129_national_disability_agreement_factsheet.pdf 6 http://www.un.org/disabilities/convention/conventionfull.shtml 116

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towards enhancing the equitable social well-being of people with disability, rather than as is often the case, with a focus on narrowly constructed clinical processes and technical outcomes. The NDA is further supported by the National Disability Research and Development Agenda (NDRDA) developed by the Commonwealth Government’s Disability Policy and Research Working Group. The NDRDA calls for research that documents the social position of disabled people with a particular focus on social participation, well-being and inclusion. This research is to focus on the outcomes which people experience, which, can in turn, be used to secure practical outcomes for people in the sector. Research, they argue, should focus on the lived experience of people with disabilities, recognising that disability issues may be experienced differently (Disability Policy and Research Working Group 2011). In particular, such research should contribute to a reform agenda resulting in the continuous improvement of the design and delivery of disability services, including enabling access to specialist disability services. As they observe ‘substantial reform, robust research and development will be central to supporting and sustaining the reform process’ (Disability Policy and Research Working Group 2011, p. 33). The NDRDA also calls for the development of research methods that can be practically used in this sector to adequately reflect the social position of people with disabilities. Such research will encompass work that documents ‘the scale, causes and impacts of prejudice towards People with Disability including those stemming from stereotypes, assumptions and community attitudes’.7 Across these documents one finds a call for significant reform of the disability services sector. These documents call for the availability of early intervention services for people with disabilities, quality assurance, better trained service providers, consistent delivery of services, support for families and carers and closing of gaps in services. Most notably the NDA seeks to achieve an ‘effective, efficient and equitable disability services system with a focus on timely, person-centred approaches and lifelong planning’ (Disability Policy and Research Working Group 2011, p. 18). While all this policy discourse seems right and good, there is something inherently missing from it. Why would it be that having a disability, any disability, meant that by its very existence, that one would immediately be a target for discrimination or social disadvantage? And moreover, how could it be that such attributes could readily be redressed through policy reform or the more effective provision of a service delivery framework? There is in fact, something much bigger going on here. At issue is the social and historical process of governing the disability space and policy concerning the social position of people with disability, which requires reform 7   h t t p : / / w w w. c o a g. g ov. a u / c o a g _ m e e t i n g _ o u t c o m e s / 2 0 0 8 – 1 1 – 2 9 / docs/20081129_national_disability_agreement_factsheet.pdf 117

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just as much as the service delivery model does. Policy documents such as the NDA, tidily seek to step around these issues. However, the first three chapters of this book have put the issue of governance and the broader issue of the social relations of disability, and their very real consequences for people experiencing in hearing disability, on the table, for recognition, debate and action. In Chapter 3 we opened up the issue as to how existing hearing services have become agents through which the construction of a certain notion of able-bodiment (i.e. the hearing person) is deployed (see Hogan 1997 and 2001 for further detail on this issue). Our system, in common with many systems across the world, developed in a manner reactive to urgent demands of the day and has developed incrementally but unreflectively since. This form of service development has increasingly focused on the provision of devices that while needed, were not in themselves sufficient to address the social inclusion needs of people with hearing disability. In consequence through this book we sought to open up debate about the rationality of existing policy in hearing services. We seek to commence a change process that is concerned with the development and delivery of a service model focused on ensuring social inclusion rather than almost solely being focused on the provision of devices. This work entails bringing forth a vision about the future of hearing services while addressing both the internalisation of oppression by people who experience hearing disability and with regards to the impact such internalisations have had on our existing service providers and service provision models. Such work is consistent with the emergence of a broader policy agenda in disability services that recognises the issue of ableism and the need to advance the participation and social inclusion of people with disability in society. This agenda seeks the introduction of a new service paradigm, one that is derived from a service culture which is client and outcome driven rather than provider driven and focused. Within this approach, making decisions about the nature and extent of services provided reflects a social value – where clients are recognised as being competent, autonomous individuals who use services to enable them to rightly take their place in mainstream society (Oliver and Barnes 1993). Given the evidence we put forward in Chapter 1, we would argue that this has not been achieved by hearing services to date. Considering the Australian system one can see a collision of service models. On the one hand the functionality of the existing system is steeped in pathdependency where service design is strongly influenced by a history of medical dominance, ableism, business interests and resource constraints, which in net effect privileged the emergence of a device-centric model. On the other hand, society demands client control and a focus on outcomes that facilitate social equity and participation. At the centre of this process is the Australian Government which administers a variety of acts of Parliament including the Hearing Services Act and the enabling acts associated with the NDIS. It must be appreciated that long term policy advice on hearing services has stemmed from the National 118

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Acoustic Laboratories (Australian Hearing). It must also be appreciated that the service model deployed through the National Acoustic Laboratories and Australian Hearing is device focused. It is simply not possible for the Australian Government to bring forward a coherent national model of hearing services while it continues to take its primary advice from a small group of institutions whose practical interests are inherently in conflict with a change agenda. Similarly, it is only through these lenses that one can appreciate how it could be that hearing services has been and continues to be managed outside of all other disability policy in Australia. The Australian Government has to disentangle itself and others from the limits of the past. This can be achieved by (a) the proposed selling of Australian Hearing and its existing research arm, the National Acoustic Laboratories,8 and (b) the establishment of a hearing services policy unit within the National Disability Insurance Agency and (c) opening up the provision of all hearing services (including those for people whose needs are prioritised and protected under law [community service obligations]) to competitive tender. The need for such a significant change is reinforced by the insights that can be drawn from work in the political sciences which enables us to take a much more realistic stance with regards to policy and how the hold and influence of existing policy constrains any further action in this space. In policy terms a specific policy does not have to be launched to be effective. Indeed, if successive governments tacitly pursue a given policy over a long period of time, as they have with a device focus in hearing services, then realistically, the models as they are provided on the ground are in essence, the government’s policy on this issue (Stoker 2012). Jordan and Halpin (2006) add a further perspective here noting that in a given area, government really only has a single dominant policy strategy (for example, the provision of hearing aids) and all other approaches have to be considered with regards to the extent to which they fit with the dominant strategy. If a proposed policy strategy fits poorly with the dominant one (for example, the dominant strategy is focused on device inputs and alternate approaches require a focus on social outcomes) then in practice the dominant strategy wins out every time. As such, the insights from political science teach us that simply trying to append what amounts to a significant policy change to an existing dominant strategy does not work. To secure real change, the existing policy has to be deliberately superseded. Problematically, every time an opportunity arises for significant innovation in hearing services in Australia, such as with the development of the outcome-centric NDIS, hearing services are either excluded from such processes or the existing model is subsumed within the broader program without substantive changes occurring. As such one can say that despite the fact that the existing model is supported by interests that are keenly resilient, the model still must be transformed. 8  Keep in mind that a large proportion of the work it does is related to hearing device research that can readily be conducted by the market or within universities. 119

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Towards an Outcomes Based Program Focus, and Supporting Social Research – Beyond Medical Approaches to Hearing Disability.

In countries such as Australia, government authorities that oversee the provision of hearing services do not routinely collect, and therefore cannot report on the outcomes arising from those publically funded hearing services. Similarly, when such data collection processes do occur, there is little if any public consultation about the scope and nature of such research. By contrast, government authorities can report on the number of devices provided and on the costs of delivering hearing services. When considered in light of the goals of government’s own national disability strategy, a lack of focus on outcomes is inconsistent with its own policies. Funding for social research in hearing services is all but nonexistent. Like many disability services, the kinds of research that need to be undertaken fall outside the scope of the country’s National Health and Medical Research Council and are barely in scope for the country’s program of social research funding (managed by the Australian Research Council). Despite the establishment of the National Disability Insurance Agency, whose remit has included the support of outcomes research, such research funding has not, at the time of writing, been forthcoming. Moreover, given its mandate, any funding that comes forth is most likely to be narrowly focused on those people who access the NDIS. While there has been discussion for some time about the need to establish a program of funds for socially-focused disability research, I am not aware of any substantive progress on this issue. Australia is not unique in its lack of adequate focus on disability research, and it is difficult to imagine how the social position of people with disability can be benchmarked and monitored in the absence of such work. Closing Remarks

Over the past 50 years, the social aspects of hearing services have taken a back seat to an increased clinical focus on rapidly advancing technology. It is time for change. Although while clients have enjoyed specific benefits from technological change, many of the negative human elements of living with hearing disability remain. Most specifically we note poorer social and health outcomes impacting on this group generally (Hogan et al. 2009), as well as stigmatisation and subtle marginalisation. As such, it is timely that we review the overall needs of this client group, and work towards the provision of more comprehensive interventions that address the well-being of people living with hearing disability in broader society.

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Appendix Anthony Hogan

Consideration of Costs Associated with Deploying the Montreal Program

Now let us look at the costs of pursing the original Montreal Program recruitment strategy, from within commercially based hearing services, and consider whether there may in fact be a business case to support its use. In describing these costs, I assume that providers offer group-based interventions from within their own clinic, as cramped as this may be. I take this position because where providers have tried to offer programs off-site, it typically gets too hard and they stop running the intervention. Following this I assume that the running costs of providing the business space (rent, electricity, chairs) are sunk costs; that is, costs the business would pay for anyway, even if they did not offer a program. I also assume that the provision of assistive listening devices for demonstration purposes in the program are also a sunk cost, as a preferred provider of hearing services would have a demonstration set of such devices within their practice. The engagement or outreach recruitment aspect of the program, particularly the proposed home visit, is the most time intensive and therefore costly part of this proposed program. This typically involves one hour with the client. For this exercise I assume that travel takes two hours (one hour each way from the clinic). As such, the recruitment visit entails three hours of professional time. A field evaluation (Hogan et al. 1994) demonstrated that up to 300 kilometres may be travelled by the recruiter in conducting home visits. Travel is costed as per the Australian government travel allowance of $AUD 0.70 per kilometre. The subsequent follow up telephone calls required an additional one hour of clinical time per client. I note here that the recruiter does not have to be a speech pathologist or audiologist. Where this program is being run at the clinical level, with the outreach component, I would still argue that in order to be effective (that is, client actually attends, receives clinical benefit and is enabled to make the most of any devices offered), the majority of the engagement process (such as the telephone and mail contacts) must occur. Internet and email facilities are also assumed to be sunk costs. The costs of running the outreach program includes transport, printing, refreshments and telephone expenses. Assuming the staff involved in the

HEaRING IMPaIRMENT aND HEaRING DISaBILITY

outreach process are allied health professionals of some form, on an hourly rate of $AUD 55.00/hour (annual salary of $AUD 100,000 [equal to $AUD 55 @ 35 hours per week by 52.143 weeks]), a cost recovery rate of $AUD 220 per client will be required to cover recruitment costs. An additional 90 minutes can be allocated to follow up contacts (approximately $AU 85). The group work involves twelve hours of direct client work, allowing two hours per program for incidental preparation time. Materials for the intervention are costed at $AUD 8 each; the cost of the Easier Listening program handbook (Hogan 2008). This totals $AUD 610, or approximately $AUD 110 per client assuming six clients per group. Summarising costs for recruitment and provision of the base program the average cost per client service would be approximately $AUD 643 per client or $AUD 3,758 per group of six people. Recruitment $305 Client cost per program $110 Materials $8 Travel (300kms @$0.70/km) $210 Telephone $5 Postage $5 Total $AUD 643 per client If I re-cost this model with regards to the presentation of it within the clinical setting, the costs would be $AUD 273 per client detailed as follows: Engagement $145 Client cost per program $110 Materials $8 Telephone $5 Postage $5 Total $AUD 273 per client Benefits

In addressing benefits I primarily focus on direct economic benefits to service providers. While benefits to society are likely to be considerably greater than those reported here (see for example Access Economics 2006), the fact remains that in many countries hearing services are privately provided and therefore the cost of intervention falls to the business unit. In their clinical trial of the Montreal Program, Hogan et al. (1994) reported that following the intervention 41 per cent (12/29) of participants sought an evaluation for a hearing aid from the audiologist with thirteen devices being sold (seven people took one hearing 136

APPENDIX

aid each while three others took two hearing aids). I assume that clients recruited in this method will be customers that the business would not have otherwise secured and, as such, all sales to these clients constitute new business. The sale of 13 devices per 29 contacts provides a new revenue stream of one hearing aid sale per 2.2 new client contacts. I also assume an average commercial profit of $AUD 1500 per device sold.1 The economic benefit to providers within the clinical model is found within the extent to which the intervention increases the rate of sales per client and/or reduces the return rate. The benefit to third party providers such as insurers results from enhanced device usage rates and the secondary health benefits which ensue (for example, reduced psychological disease, reduced visits to medical practitioners). Studies detailing these followon benefits need to be undertaken.

1  I note that these kinds of margins are not covered by the government funded voucher system in Australia. However, the costs I have noted are conservative and reasonable and reflect the real costs of providing a comprehensive outreach process, consistent with better practice in public health. 137

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Index

ableism 9, 12, 57, 72, 75, 76, 77, 105, 109, 118 privileging 69 acceptance 34, 45, 60, 69, 71, 73 non- 69 acoustic accessibility 57, 82–83, 107, 109, 113, 115 affect 86–88 Montréal Program and 88–90 see also Montréal Program audiological Camelot 50, 69 audiology 8–9, 44, 50–51, 57, 112 Australian Audiological Community 59 Montréal Program and 87 Australian disability services 23–26, 110, 111 see also services Australian National Disability Agreement (NDA) 14, 116, 117, 118 bluffing 27, 56, 67, 70, 98 body, bio-mechanical model of 38 centralised morality 19, 20 citizenship 3, 6, 7, 8, 11, 17, 21 compromised 7 disability and 7, 69, 78–81, 108 interdependency and 17–18 see also interdependency phono-centrism and 17 see also phono-centrism rights 16, 76, 77–78, 105, 116 commitment therapy 60

communication 2–3, 6, 48, 113 breakdown 37, 56, 71, 74, 90 changes 46, 82 control 10, 19, 26 disability 24, 44, 48 hearing impairment and 24–25 see also hearing impairment management 48, 56–57, 61, 69, 71, 91–92 social issue, being 4, 6, 12, 26, 28–29, 30, 31–32, 33, 44, 52, 57, 79, 98, 106 spoken 17, 45 compliance 10–11, 75 historical 18–19 medical model, with 73 non- 10–11, 74–75 phono-centric culture, within 7, 106 see also phono-centrism strategies 73 coping strategies 44, 69 Deaf Community 2, 3, 4, 110 Deaf Culture 2 deafness 2–3, 4, 16, 54 see also hearing disability; hearing impairment governance of 15–16, 17, 20 see also governance historical perception of 16, 19–20, 34, 106 industrial 55–56, 62, 91 marginalisation of 106 stereotypes 19–20 Deafness Forum 109–110

HEARiNG IMPAiRMENT AND HEARiNG DiSABiLiTY

dependency 21–22 economic 18, 20 inter- 16, 17–18, 21 path 78, 118 reciprocal 21 self-sufficiency, and 21–22 de-stigmatisation 33–34, 48, 82, 103 see also stigma devices/technologies 6, 25–26, 51, 66, 105, 106, 111, 112, 114– 115, 118–119 acceptance of 99, 100 accountability for 114–115 cochlear implants 6 hearing aids 8, 25, 28, 32, 34, 50, 59, 61–62, 65, 73, 106, resisting 6, 71, 99, 100 disability 2, 11, 16, 77, 94–95, 108, 109 citizen-centric model 78–81 coping strategies 44–45 deficit-tragedy model of 6, 7 depictions of 16–17 discrimination 7 doxicity of 11, 105 hearing see deafness; hearing disability institutionalisation 105 psychosocial dynamics of 40–42, 44–45, 46, 58 governance of 4, 7, 15, 18, 74, 75, 106, 116 see also governance institutional training and 20–21 marginalisation, and 105 see also marginalisation medical model of 6, 9, 39, 80 bio-mechanical 38 moral menace, as 16, 18–21, 106 overcoming 6 pathologisation 56 policy 1, 7, 12, 106, 116 rights 7 140

segregation 105 services 12, 69, 105, 115, 116–119 see also services sick role model 6, 75 social model of 2, 6, 19–20, 38–39, 78–79, 106 social relations of 8 stigmatisation see stigma diswelfare 76, 77 empowerment 33–34, 60, 81 enablement 18, 54–55, 56, 58, 59–60, 61, 67, 87, 88, 89, 101–102, 103, 106 107, 114 fairer hearing 5, 43 fitting in 35, 36–37, 63 governance 4, 7, 15, 18, 75, 105–106, 109 ableist 69, 75 see also ableism citizen-centric model 78–81 compliance/conformity model 75, 106–107 deafness, of 15–16, 17, 20 see also deafness difference, of 72 disability, of 4, 7, 15, 18, 21, 74–75 see also disability gender politics and 21–22 hearing disability, of 15–16, 17, 20, 70, 108 see also hearing disability hearing impairment, of 70 see also hearing impairment habitus 2, 105 health related quality of life (HRQoL) 28–29, 43–44, 51 hearing 2, 9, 17, 51 see also deafness; hearing disability; hearing impairment

INDEX

aids see devices/technology changes 2, 4, 33, 37, 56, 89 culture 2, 6–7, 10–11, 35, 46, 47, 90 disability see hearing disability impairment see hearing impairment passing as 33 see also passing psychosocial aspects 3, 4, 9, 15, 40–43, 64 services 3, 10, 12, 57 116–119 see also services hearing disability 1, 3, 6, 46, 71 see also deafness; hearing impairment affect, and 85 see also affect approaches to 5–7, 10–11, 61–62, 105 audiological 43–44 citizen-centric 9, 11, 55, 118 see also Montréal Program historic 11, 26, 89 psycho-social 62–65, 119 definition 3 empowerment 33–34, 60, 81 epidemiological construction of 43–44, 51 genealogy of 2, 66–67 governance of 15–16, 20, 70, 108 see also governance maladaptation 71 hearing culture and 46–48 managing 48, 61, 95, 97, 98 mental health, and 40–42, 44–45 pathologisation 11, 31, 44, 45, 79 perspectives on 6–7 prevalence 79 psychosocial aspects of 27–29, 33, 35, 39–40, 43–44, 46, 49, 58, 64–65, 79 services 9, 12–13, 49, 69, 77, 81, 105 see also services social indicators, and 9 141

social position, and 22 socio-economic impact 29–31 autonomy, on 30–31 community participation, on 31 educational 29 employment, on 29–30 social capital, on 30 social cohesion, on 31 stereotyping 19–20 see also stereotyping stigmatisation of 8, 66–67, 69 see also stigma Hearing Handicap Inventory for Adults (HHIA) 40 hearing impairment 4, 88–89, 106 see also deafness; hearing disability acceptance 34, 45, 60, 69, 71, 73 adapting to 85, 86 see also identity affect, and 85 see also affect communication and 24–25 see also communication definition 3 empowerment 33–34, 60, 81 governance 70 see also governance incidence of, Australia, in 23–24 managing 89, 91 stigmatising, being 98 see also stigma mental health, and 40–42, 44–45 misperception 88, 89, 90–91, 95, 96, 99 psychosocial aspects of 27–29, 33, 35, 39–40, 43–44, 46, 49, 51, 58, 63, 64–66, 89 reduced social participation, and 96, 97–98 rehabilitation 50–51, 61–62, 63, 112 reluctance to acknowledge 88, 89, 90, 91, 96, 97–98, 99–100 services see services social relations of 9–10

HEARiNG IMPAiRMENT AND HEARiNG DiSABiLiTY

stigmatisation 26–27, 69, 88, 96, 97–98 see also stigma identity 3, 11, 39, 59, 65, 81 contested 46, 88 hearing 66, 80, 86 legitimacy 5, 7, 36, 66, 71, 89 managing change to 59–60, 102–103 self-formation 72 social 47–48, 86–87, 88, 93–94 identity theory 47, 58, 66 stigma and 33, 34, 35, 36–38, 66, 88 see also stigma wellbeing and 3, 46–48 see also wellbeing social isolation 31, 44, 91, 95 see also social isolation social position 6, 89–90 threat 38, 47, 58, 59, 67 inclusion 1, 26, 92, 104, 117 see also marginalisation; stigma communicative 12 social 5, 12, 26, 30, 75, 81, 82, 103, 110, 113, 116, 118 interdependency 16, 21 citizenship and 17–18 see also citizenship International Convention for Persons with Disabilities 12–13 International Year of Disabled Persons (1981) 77, 116 language 3–5, 66, 87, 88 patterns 82 sign 2–3, 4, 17 spoken 17 legitimacy 5, 7, 36, 66, 71, 89 liberal individualism 20 lip reading 35, 50 maieutic process 89, 103–104 142

maladaptation 52, 69–70, 71 marginalisation 6, 8, 16, 26, 32, 34, 40–46, 47, 56, 80, 105, 107 contesting 109 fear of 36 maintaining 75 non-compliance and 74–75 stigma and 10, 34, 89, 111, 120 see also stigma Meniere’s Disease 5 mental health 10, 39, 43–44, 65 hearing disability and 28, 34, 40– 42, 44–45, 79 see also hearing disability hearing impairment and 10, 40–42, 44–45 see also hearing impairment misperception 11, 45, 55, 56, 58, 60, 69, 85, 88, 89, 90–91, 93, 95, 96, 97, 99, 101 Montréal Model/Program 10, 49, 53–58, 61, 64, 85, 90, 91, affect, and 88–90 see also affect benefits 138–139 change oriented 57–58 communication management 56–57, 61 contrasting approaches 61–62 costs 137–138 education strategies 57 engagement with 58–59 home-based discussion groups in 103–104 importance of 101–104 international engagement with 63–65, 67–68 managing personal change 59–60, 92 –medical model dichotomy 58–59, 61 minority politics, and 56

INDEX

misperception 11, 45, 55, 56, 58, 60, 69, 85, 88, 89, 90–91, 93, 95, 96, 97, 99, 101, 102 objectives 54–55, 101–103 outcomes 92 problem-solving process 53, 54–55, 60, 61, 100–101, 103 rationale 55–58 recruitment strategy 53–54, 58, 90 reluctance 11, 45, 53, 55, 56, 58, 60, 61, 66, 69–70, 88, 89, 90, 91, 96, 97–98, 99–100 support 53, 55, 61 trusted persons model 53, 58 moral panic 18–19 National Disability Agreement 8, 13, 81, 116 National Disability Insurance Scheme (NDIS) 114, 119, 120 National Disability Research and Development Agenda (NDRDA) 117 neo-liberalism 69, 74, 105 oppression 8, 80, 107, 109, 115 oppressive discourse 11, 38 resistance to 108 self- 7, 75, 109, 118 Oralism 22 participation 1, 12–13, 34, 61, 75, 106 communicative 37, 45, 71, 83 denial of 17, 35, 47, 63, 69 device-centric model of 32 social 31, 34, 48, 73, 77, 78, 81, 82, 90, 96, 99, 103, 113–114, 117, 118 workforce, in 30 passing 27, 33, 34, 48, 67, 70, 98, 103 143

phono-centrism 6, 7, 16, 17–18, 27, 65–66, 105–106, 115 privileging 3, 26, 109 process of change 107–108 reluctance 11, 45, 53, 55, 56, 58, 60, 61, 66, 69–70, 88, 89, 90, 91, 96, 97–98, 99–100 self-sufficiency, discourse of 16, 21, 74, 81, 105, 106, 116 services 9, 12–13, 49, 69, 77, 81, 105 aural rehabilitation 50–51 changing 69, 75–78, 81–83, 107–108, 109, 110 accountability 114–115 models 113–114 policy 116–119 providers 111–112 citizen-centric 9, 51 deficit centred 80, 105 delivery 40, 111, 116–117 device-centric interventions 69–70, 71, 73–74, 75, 82 see also devices engaging with 58–59 hearing aids 50–51 see also devices maladaptation 71 medico-military 50 Montréal Program 49, 53 see also Montréal Model/Program paradigm change 10–11 policy 1, 7, 106, 109–110 reinforcing stigmatisation 71 see also stigma restructuring 105 social perspective 49, 50–53 social research in 120 status quo 69–73 traditional 57 user-led 80–81

HEARiNG IMPAiRMENT AND HEARiNG DiSABiLiTY

Short Form 36 (SF-36) 40, 43 sign language 2–3, 4, 17 social apartheid 7, 116 Social Darwinism 19 social identity theory 47, 58, 66 social isolation 30, 31, 35, 36, 44, 80, 91, 95 social participation 31, 34, 48, 73, 77, 78, 81, 82, 90, 96, 99, 103, 113–114, 117, 118 sociology of the breach 35, 65, 94–95 stereotyping 19–20, 27, 34, 35, 67, 115, 117 stigma 8, 10, 33, 34–35, 44–45, 46, 47, 52, 65, 89, 90, 101 acceptance of 7, 26–27, 33, 67, 75 de-stigmatisation 33–34, 48, 82 fear of 56, 58–60, 66, 85, 95, 101 hearing loss and 26–27, 94, 98 see also hearing impairment legitimation of 8, 27 management 33, 35–36, 71

marginalisation, and 10, 34, 89, 111, 120 see also marginalisation self-stigmatisation 59, 66, 67 social identity, and 33, 34, 35, 36–38, 66 see also identity United Nations Convention on the Rights of Persons with Disabilities 9, 77, 116 Article 3 1 valorisation 8 welfare capitalism 10, 11, 76, 78 wellbeing 22, 27, 31, 46–48, 82 health related quality of life (HRQoL) 43–44 hearing impairment and 43, 44–46 psychosocial 43, 44, 86 social capital and 30 social identity and 46–48 stigma and 10, 26, 34, 67

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Interdisciplinary Disability Studies Series Editor: Mark Sherry, The University of Toledo, USA Disability studies has made great strides in exploring power and the body. This series extends the interdisciplinary dialogue between disability studies and other fields by asking how disability studies can influence a particular field. It will show how a deep engagement with disability studies changes our understanding of the following fields: sociology, literary studies, gender studies, bioethics, social work, law, education, and history. This ground-breaking series identifies both the practical and theoretical implications of such an interdisciplinary dialogue and challenges people in disability studies as well as other disciplinary fields to critically reflect on their professional praxis in terms of theory, practice, and methods. Other titles in the series Disability, Human Rights and the Limits of Humanitarianism Edited by Michael Gill and Cathy J. Schlund-Vials Disability and Social Movements Australian Perspectives Rachel Carling-Jenkins Disability and Discourse Analysis Jan Grue Youth and Disability A Challenge to Mr Reasonable Jenny Slater Communication, Sport and Disability The Case of Power Soccer Michael S. Jeffress