Tài liệu Disability and Social Change ppt

change

social

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disability

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a south african agenda

edited by brian watermeyer,

leslie swartz, theresa lorenzo,

marguerite schneider and

mark priestley

disability

and

social

change

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Compiled within the Child, Youth, Family and Social Development Research Programme

of the Human Sciences Research Council

Published by HSRC Press

Private Bag X9182, Cape Town, 8000, South Africa

www.hsrcpress.ac.za

© 2006 Human Sciences Research Council

First published 2006

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, including photocopying

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in writing from the publishers.

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Contents

List of tables and figures viii

Foreword ix

Acknowledgements x

Acronyms and abbreviations xi

1 Introduction and overview 1

Brian Watermeyer and Leslie Swartz

Section I Theoretical approaches to disability 7

2 Disability and the environment 8

Marguerite Schneider

3 Developing disability studies programmes: the international context 19

Mark Priestley

4 Disability and psychoanalysis 31

Brian Watermeyer

Section II Government and societal responses to disability 45

5 A history of the disability rights movement in South Africa 46

Colleen Howell, Schuaib Chalklen and Thomas Alberts

6 Integrating disability within government:

the Office on the Status of Disabled Persons 85

Sebenzile Matsebula, Marguerite Schneider and Brian Watermeyer

7 Establishing the Secretariat for the African Decade

of Persons with Disabilities 93

Shuaib Chalklen, Leslie Swartz and Brian Watermeyer

8 Disability and human rights: the South African

Human Rights Commission 99

Charlotte Mcclain Nhlapo, Brian Watermeyer and Marguerite Schneider

9 HIV/AIDS and disability: new challenges 108

Leslie Swartz, Marguerite Schneider, and Poul Rohleder

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10 ‘How could she possibly manage in court?’ An intervention programme

assisting complainants with intellectual disabilities in sexual assault cases

in the Western Cape. 116

Beverley Dickman, Amanda Roux, Susan Manson, Gillian Douglas

and Nokuthula Shabalala

11 Language policy and SASL: interpreters in the public service 134

Marion Heap and Helen Morgans

Section III Disability and education 148

12 Disability and schooling in South Africa 149

Crain Soudien and Jean Baxen

13 Disabled students and higher education in South Africa 164

Colleen Howell

14 Developing a Disability Studies programme: engaging activism and academia

for social change 179

Theresa Lorenzo, Mzolisi ka Toni and Mark Priestley

15 Developing literacy with Deaf adults 192

Meryl Glaser and Theresa Lorenzo

Section IV Disability, poverty, and social security 206

16 Disability, poverty, gender and race 207

Tony Emmett

17 Tough choices: disability and social security in South Africa 234

Leslie Swartz and Marguerite Schneider

18 Issues in disability assessment 245

Ruth Watson, Marion Fourie and Joan Andrews

Section V Disability and service provision 260

19 Physically disabled women and discrimination in reproductive health care:

psychoanalytic reflections 261

Nokwanele Mgwili and Brian Watermeyer

20 Community-based rehabilitation: new challenges 273

Sarah Rule, Theresa Lorenzo and Milani Wolmarans

21 Psychiatric disability and social change: an insider perspective 291

Siyabulela K and Madeleine Duncan

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22 Parents and therapists: dilemmas in partnership 311

Judy Mckenzie and Bronwen Müller

Section VI Disability and human spaces 324

23 Disability and universal access: observations on housing from the spatial and

social periphery 325

Justine Coulson, Mark Napier and Gertrude Matsebe Justine Coulson, Mark Napier and Gertrude Matsebe Mark Napier and Gertrude Matsebe

24 Disability and homelessness: a personal journey from the margins

to the centre and back 350

Gubela Mji

25 Entrepreneurship, employment and skills: Ari Seirlis in conversation 361

Ari Seirlis and Leslie Swartz

26 Media and disability 373

Jane Stadler

27 ‘Ag shame’ and superheroes: stereotype and the signification of disability 387

Kathleen McDougall

List of contributors 401

Index 404

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DISABILITY AND SOCIAL CHANGE: A SOUTH AFRICAN AGENDA

viii

List of tables and figures

Tables

11.1 SASL interpreters in South Africa, by category, number and by ratio of

interpreters to SASL users 140

12.1 Distribution of disabled persons per category, per province 150

12.2 Distribution of special schools and learners in special schools,

per province 151

16.1 Estimates of national disability prevalence rates 1995–1999 209

16.2 Percentages of people with and without disabilities receiving grants 223

16.3 Distribution of disability among the major population groups 225

17.1 Number of beneficiaries of disability grants, by province 237

17.2 Annual growth in disability grant beneficiary numbers, by percentage 238

18.1 Categories of productivity 257

22.1 The public/private divide in South African health, mid-1999 312

23.1 Case study characteristics: communities at a glance 329

23.2 Types of first impairment compared to national average

(2001 Census) 330

23.3 Dwelling types occupied by sample 342

Figures

16.1 Monthly income of people with and without disabilities, 1996 222

16.2 Personal incomes of disabled people, by gender 224

16.3 Percentages of population with and without disabilities,

by level of education 226

20.1 CBR partnership programme: an implementation model 285

23.1 Settlements around Tshwane 328

23.2 Inaccessible toilets in RDP houses 332

23.3 RDP and ESCAP toilet plans 333

23.4 Lack of privacy: a toilet in a small house 333

23.5 Drawing by Elias Mahoro showing informal squat toilets –

the only option 334

23.6 Poor roads are a barrier 337

23.7 Drawing by Amos Baloyi showing how muddy uneven paths

prevent independent movement 338

23.8 Saulsville Railway Station: no access 339

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ix

Foreword

In the world today, disabled people are lobbying the United Nations to advance the

rights of disabled people by adopting the Disability Convention. In Africa, disabled

people and their governments are implementing the African Decade of Disabled

People (2000–2009) to ensure improvement in, and equalisation of, opportunities

for disabled people. In South Africa, in 2006 we celebrate the tenth anniversary

of the adoption of our Constitution, a document we can all be proud of and that

promotes the rights of all South Africans. Unlike many other such documents, our

Constitution specifically mentions the right of disabled people to equality.

As we advance our struggle on all these fronts, it is therefore fitting that this book,

Disability and social change: A South African agenda, should appear, representing

one more step towards the realisation of rights for all South Africans.

In 1997, the then Deputy President of South Africa, Thabo Mbeki signed the White

Paper on the Integrated National Disability Strategy – the INDS. The INDS placed

the issue of disability firmly in the centre of concerns around what it takes to make

a society that is accessible and provides equal opportunities for all. The INDS called

for research to promote the rights and participation of disabled people in our

society. This major book, supported by the Disability Movement in South Africa,

and with its many authors and wide range of topics, answers that call. It also asks

all South Africans to continue thinking about and researching the rights of disabled

people, to continue to build a more inclusive society, and to take on board the

slogan of Disabled People South Africa, ‘Nothing about us, without us!’. The book

makes it clear how far we have come since the INDS – it is very unlikely that such a

document would have been published even ten years ago. It also makes it clear that

we still have a long way to go, in relation to the challenges of unemployment, and in

making transport and social services truly accessible.

The editors and authors of this book come from a variety of sectors in South Africa,

and are diverse with respect to disability, gender, race, and class. Collectively they

issue us with a powerful challenge – to intensify our efforts to make the provisions

of our Constitution real for all South Africans. Read this book – it may well spur

you on to make your own best efforts to address the disability agenda. The best

compliment you could pay to the authors of this remarkable volume would be to

make your own contribution to enhancing the rights and opportunities of disabled

people in South Africa. I call on all members of the Disability Movement to engage

in this disability and social agenda.

Lewis Nzimande, MP and National Chairperson, Disabled People South Africa

1999 to 2006

FOREWORD

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DISABILITY AND SOCIAL CHANGE: A SOUTH AFRICAN AGENDA

x

Acknowledgements

The contributors to this volume are drawn from a broad cross-section of the

diverse and complex nation that is South Africa. As editors, we have attempted to

bring together a range of voices within our country’s disability movement, and we

owe a great debt of gratitude to all the authors, for enriching our work with their

experiences, insights and images. This has been a long process and a difficult one;

we thank all the authors for both their generosity and their patience.

The Human Sciences Research Council (HSRC) has, over the past four years, shown

substantial commitment to researching disability. The publication of this book, thus,

is but one of a range of disability research initiatives in which the HSRC is engaged,

and for which the organisation deserves our recognition and thanks. From all at the

HSRC Press we have had particular support. In the broader HSRC, Professor Linda

Richter made possible the establishment of a research focus that has lead to this

book and to a number of other outputs in the field of disability research.

Stellenbosch University generously allowed Leslie Swartz a secondment to the HSRC

very soon after he had arrived at the university, and this provided him with the

opportunity formally to establish disability work at the HSRC.

The Disability Studies Programme at the University of Cape Town, in which a number

of the editors and contributors have been involved, has two important relationships,

both of which are reflected in this publication. The British Council facilitated and

funded a link between the Disability Studies Programme and the Centre for Disability

Studies at Leeds University. This link has done much to develop disability work in

South Africa. The linkage has been supported by the participation of Disabled People

South Africa (DPSA) and particularly by the consistent and helpful support of Mzolisi

ka Toni, who is not only a contributor to this book, but also a key person in ensuring

that it has come into being.

Through the arduous process of writing and editing, Brian Watermeyer and the editorial

team were ably assisted by Ann Turner. Hayley MacGregor was a great help and support

early on in the process. Thomas Alberts deserves very special mention – without his

considerable editing skills, and his rare mix of commitment, enthusiasm, hard work,

and great humour under pressure, this book would have been of far less value.

Many of the chapters in this book refer to the daily lives and the ongoing struggles

for equality, dignity, and access for many disabled South Africans. This book is

neither comprehensive nor the last word. We hope, though, that what we have

done provides some recognition, from the research and academic sectors, of the

importance of your lives – not only in terms of disability but also for all who are

serious about democracy in South Africa.

The editors

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xi

Acronyms and abbreviations

AFUB African Union of the Blind

AIDS Acquired Immunodeficiency Syndrome

AIHW Australian Institute of Health and Welfare

ARI African Rehabilitation Institute

BCM black consciousness movement

CBR community-based rehabilitation

CEDAW Convention on the Elimination of Discrimination Against Women

CMH Cape Mental Health Society (SA)

CRC Convention on the Rights of the Child

CREATE Community-based Rehabilitation Education and Training for

Empowerment

CRF community rehabilitation facilitator

CSIR Council for Scientific and Industrial Research

DeafSA Deaf Federation of South Africa

DEC Disability Employment Concerns

DICAG Disabled Children’s Action Group

DoE Department of Education

DoH Department of Health

DoL Department of Labour

DoSD Department of Social Development

DPI Disabled Peoples International

DPO disabled peoples organisation

DPSA Disabled People South Africa

DSFSA Down Syndrome Forum of South Africa

DSI Danish Council of Organisations of Disabled People

DSM Diagnostic and Statistical Manual of Mental Disorders

EEFP Economic Empowerment Framework Programme

ESCAP UN Economic and Social Commission for Asia and the Pacific

EWP6 Education White Paper 6 on Special Needs Education

GAF Scale Global Assesment of Fuctional Scale

HIV Human Immunodeficiency Virus

HSRC Human Sciences Research Council

ICCD Interdepartmental Co-ordinating Committee on Disability

ICF International Classification of Fuctioning, Disability and Health

ICIDH International Classification of Impairment, Disability and Handicap

ID intellectual disability

INDS White Paper on an Integrated National Disability Stategy

ACRONYMS AND ABBREVIATIONS

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DISABILITY AND SOCIAL CHANGE: A SOUTH AFRICAN AGENDA

xii

ISGSA Individual Scale for General Scholistic Aptitude

IUPHC Institute of Urban Primary Health-Care

LHR Lawyers for Human Rights

MPDP Membership and Policy Development Programme

MRC Medical Research Council

NCCD National Co-ordinating Committee on Disability

NCPPDSA National Council for Persons with Physical Disabilities South Africa

Nedlac National Economic Development abd Labour Council

Nepad New Economic Partnership for African Development

NF National Forum

NPHE National Plan for Higher Education

NWC National Working Committee

OSDP Office on the Status of Disabled Persons

OT occupational therapy

PAFOD Pan African Federation of the Disabled

PANSALB Pan South African Language Board

QASA QuadPara Association South Africa

RURACT Rural Disability Action Group

SABC South African Broadcasting Corporation

SADI South African Disability Institute

SAFCD South African Federal Council on Disability

SAFMH South African Federation for Mental Health

SAFOD South African Federation of Organisations of the Disabled

SAHRC South African Human Rights Commission

SANCA South African National Council for the Aged

SANCB South African National Council for the Blind

SANEL South African National Epilepsy League

SAPS South African Police Services

SASL South African Sign Language

SASO South African Students Organisation

SAVE Sexual Assault Victim Empowerment Programme

SDS Society for Disability Studies

SHAP Self-Help Association of Paraplegics

Stats SA Statistics South Africa

UDF United Democratic Front

UPIAS Union of Physically Impaired Against Segregation

VABS Vineland Adaptive Behaviour Scales

WHO World Health Organization

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1

Introduction and overview

Leslie Swartz and Brian Watermeyer

If one approached a South African in the streets of Cape Town, Soweto or

Polokwane, and asked him or her to provide associations to the notion of ‘race’, the

answers one would gather would be rich, layered and heavily imbued with personal

and political signification. The painful legacy of institutional racial discrimination

shared by all South Africans, and the remarkable emergence of our nation from

decades of conflict, have left an awareness of the oppressive appropriation of the

race paradigm indelibly etched on the national psyche. Similarly, though more

latterly, an awareness of gender as a potentially oppressive marker of differentness

has grown amongst the South African populace, not least as a result of anti-sexist

legislation being enshrined in the new constitution of 1996. A history tainted by the

systematic and brutal marginalising of the majority of South Africans has left us

aware of what it means to have one’s identity, one’s self devalued or excluded.

It is in the wake of this sweeping imperative towards recognition of our racist past

that we, as South Africans, begin to explore and interrogate further markers of

difference, which carry their own weight of discrimination. The idea of ‘oppression’

is firmly attached within South African colloquial culture to the idea of race;

however, the marker of disability has yet to achieve this status. When confronted

with the notion of ‘disability’, our minds do not turn instinctually to an exploration

of possible modes of systematic discrimination and disadvantage. Rather, we remain

strongly attached to modes of attribution which prize the explanatory system of the

body, in accounting for the inequalities we see. In short, the story of disability – in

our country as well as any other – is a story of social oppression.

This book aims to firmly establish this attributive link, within a uniquely South

African context. Disabled South Africans are, collectively, amongst the nation’s

poorest, even within a country characterised broadly by atrocious levels of economic

inequality. By exploring the predicaments of a range of disabled citizens, this book

attempts to make an initial step in the forging of attributive links between modes

of discrimination and unnecessary, systematic exclusion, and the economically

and socially marginal destinies of the majority of disabled South Africans. As will

be familiar to readers acquainted with the politics of disability, it is often deeply

striking how, when one first begins to comprehend the reality that (for the most

part), our society has been designed and constructed with only the interests of a

portion of South Africans – the so-called nondisabled – in mind, overwhelming

evidence of discrimination seems to begin bursting forth from one’s surroundings.

This is because this evidence of discrimination – the stairs, the printed word, the

1

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DISABILITY AND SOCIAL CHANGE: A SOUTH AFRICAN AGENDA

2

buses and trains, the inaccessible toilets, and the hostile or patronising attitudes,

to name a very small few – remains invisible to those socialised within a disablist

environment, until an awareness begins to be actively created. Similarly, our internal

assumptions regarding what disability means, with their attendant ideas regarding

what disabled people ‘need’, or ‘should strive for’, typically remain invisible and

unquestioned within us until we are required to acknowledge and examine them.

With Disability and social change: A South African agenda, the editors have aimed to

begin – in the printed form – a dialogue, and a growing exploration, regarding what

it means to be a disabled South African. This investigation necessarily involves not

only an examination of the experience of disabled citizens, but, more importantly,

an investigation of the ways in which physical environments, policies, practices,

conventions, laws, beliefs and all other cultural artefacts serve to reproduce the

disadvantage of those individuals designated as disabled.

As in many other parts of the world, the common-sense understanding of disability

which predominates amongst South Africans could be described as falling within an

individual model. In other words, the social and economic destiny of disabled people

tends to be understood as the logical – and politically sanitised – consequence of

impairment of the body. Such an understanding obviates any interrogation of the

positioning or treatment of disabled persons by society, as it is at the level of the

individual that the ‘disability problem’ is engaged with. Across the world, as the

disability movement has gained momentum, such an individualising understanding

of disability has come under damning criticism. Proponents of a new, social

model approach to disability argue vociferously for the central consideration of

discrimination and systematic exclusion as the definitive factors in shaping the

social destinies of disabled people.

Beginning in the United Kingdom in the 1970s, the social model movement

embarked upon a vigorous and ever-burgeoning critique of social responses

to disabled people, thus also creating and developing Disability Studies as a

coherent and discrete discipline. This approach viewed more traditional, individual

understandings of disability as oppressive, in that the origin of disadvantage

tended to be located within bodily difference. By identifying such bodily difference

conceptually as impairment, and distinguishing this from the social and ideological

notion of disability, early social model theorists underscored their contention

that it is the social and political aspects of disability, not the bodily aspects, which

afford the profound levels of disadvantage under which disabled people struggle.

Instead of rehabilitation (the core business of what is termed the ‘medical model’ of

disability), the call was for political emancipation, and the recognition of the myriad

of forms of disablism which permeate our societies as the insults to human rights

and human dignity which they are.

Social model theorists critically termed earlier individual accounts of disability

– notably that traditionally propounded within biomedicine – as ‘personal tragedy

theory’. This was to point out the manner in which such accounts constructed

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INTRODUCTION AND OVERVIEW

3

disability as a random tragedy – as something which simply ‘happens’, by chance,

to individuals, who thus are, and remain, exclusively responsible for their hapless

situation of limited or non-existent participation in the production of culture

within society. Instead, the social model theorists argued that disability is not

random or natural, but a social accomplishment – disability is created by a disablist

society, through the perpetuation of barriers to the participation of persons with

impairments. It is with these barriers, and the disablist ideology which serves to

reconstruct, perpetuate and obscure them, that the discipline of Disability Studies

is concerned. Likewise, it is with the disabling aspects of South African society that

the contributors to this book have turned their attention, in order to co-create one

small step in the journey towards the creation of a barrier-free society.

Whilst this book may be viewed as a pioneering one, in the sense that it brings

the South African disability arena into the realm of academic debate and critical

examination, the disability movement in our country is a well-established one.

Rooted within a close alliance with the now ruling African National Congress

during the struggle against apartheid, Disabled People South Africa (DPSA) is a

broad-based and vibrant political organisation of disabled citizens, which continues

its efforts in mobilising change. Whilst South Africa is fortunate to have amongst

its disabled population leaders, activists and campaigners who carry immense

experience and knowledge of the nature of disability politics, a distinctly South

African Disability Studies literature is yet to emerge and develop. This publication,

thus, aims to provide a forum for South African researchers to be identified with,

and contribute to, this literature, whilst also aiming to provide an opportunity for

perhaps hitherto unpublished writers – disabled and nondisabled – to develop into

contributors to the voice of disabled South Africa. The development of a vibrant

culture of research discourse within the disability arena in our country will, in our

opinion, form the essential basis for the driving of change within civil society. It is

imperative, if change is to be fostered, that the predicaments of disabled people in

our country be explored and documented, such that the very substantial human

rights provisions of our constitution be elaborated and implemented via the

securing of state accountability for the provision of citizenship rights.

Overview of chapters

Section 1 opens the debates by examining theoretical approaches to, and

representations of, disability in South Africa – from formal theory to popular

and colloquial culture. In Chapter 2, Schneider introduces the reader to the

complex difficulties surrounding systems of defining and circumscribing disability,

whereafter, (in Chapter 3), Priestley sketches both the theoretical and social roots of

Disability Studies, as well as critically examining questions of the cross-hemisphere

application and adoption of theory. Watermeyer (in Chapter 4) presents an

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