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- Herausgeber: John Wiley & Sons
- Kategorie: Geisteswissenschaft
- Serie: SWTP - Socail Work in Theory and Practise
- Sprache: Englisch
Social Work and Disability offers a contemporary and critical exploration of social work practice with people with physical and sensory impairments, an area that has previously been marginalized within both practice and academic literature. It explores how social work practice can, and indeed does, contribute to the promotion of disabled people's rights and the securing of positive outcomes in their lives. The book begins by exploring the ways in which disability is understood and how this informs policy and practice. Opening with a thought-provoking account of the lived experience of a disabled person using social work services, it goes on to critically analyse theory, policy and contemporary legislative change. Inequality, oppression and diversity are the focus of the second section of the book, while the remainder offers an in-depth exploration of the social work practice issues in disability settings, notably work with children, adults and safeguarding. Service-user and carer perspectives, case profiles, reflective activities and suggestions for further reading are included throughout. Social Work and Disability will be essential reading for social work students and practitioners. It will also be of interest to service users and carers, students on health and social care courses, third-sector practitioners and advocates.
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Veröffentlichungsjahr: 2016
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Contents
Cover
Title Page
Copyright
Introduction
Part I Perspectives: Understanding Disability
1 Lived Experience of Impairment, Disability and Social Work
Introduction
First encounters with social work
Encountering barriers
Models of disability, law and policy
Life as a disabled adult
Positive social work practice: my perspective
Concluding thoughts
2 Theories and Models of Disability
Introduction
The historical context
Social theory and disability
Critiques of the social model
Implications for social work
Towards a theory of disability?
3 Disability from a Life Course Perspective
Introduction
Pre-birth choices
Disability and childhood
Disability, youth and transitions to adulthood
Disability and adulthood
Disability and old age
The end of life: death and dying
Conclusion
4 The Legal and Policy Perspective
Introduction
The historical development of policy
Adult social care
Policy for disabled children
Conclusion
Part II Diversity, Inequality and Disability
5 Inequality, Oppression and Disability
Introduction
What is oppression?
Types of oppression
Conclusion
6 Disability and Diversity
Introduction
Diverse people, diverse experiences
Disability as a category of human diversity
Diversity, disability and social work practice
Conclusion
Part III Disability and Social Work Practice
7 Communication and Engagement
Introduction
Language, disability and social work
Psycho-social issues, communication and disability
Communication with families and social care staff
Social work practice: meeting communication needs
Conclusion
8 Working with Disabled Children
Introduction
Social work assessment and disabled children
Assessment and outcomes
Engaging with disabled children
Parents and siblings
Family and environmental issues
Transformation and resilience – ‘Welcome to Holland’
Short breaks
Personalization and disabled children
Transition
Disabled children who are ‘looked after’
Disabled children who are looked after and permanence
Conclusion
9 Working with Disabled Adults
Introduction
Assessment and self-assessment
Maximizing choice and control for disabled adults
Working with disabled parents
Direct work with disabled adults
Conclusion
10 Safeguarding, Social Work and Disability
Introduction
The scope of safeguarding
Disability hate crime
Domestic violence
The legal and policy context of safeguarding
Disability and vulnerability to abuse
The social work role in safeguarding: working with disabled children
The social work role in safeguarding: working with disabled adults
Conclusion
11 Collaborative Practice
Introduction
What is collaborative practice?
Working with disabled people’s organizations and the third sector
Working with health
Working with education
Working with housing
Working with carers
Conclusion
Conclusion
References
Index
End User License Agreement
Guide
Cover
Table of Contents
Begin Reading
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Social Work in Theory and Practice series
Nick Frost, Shaheen Abbott & Tracey Race, Family Support
Kate Karban, Social Work and Mental Health
Ann McDonald, Social Work with Older People
Peter Simcock & Rhoda Castle, Social Work and Disability
Roger Smith, Social Work with Young People
Skills for Contemporary Social Work series
Tony Evans & Mark Hardy, Evidence and Knowledge for Practice
Andrew Hill, Working in Statutory Contexts
Hazel Kemshall, Bernadette Wilkinson & Kerry Baker, Working with Risk
Also from Polity
Lorraine Green & Karen Clarke, Social Policy for Social Work
Anne Llewellyn, Lorraine Agu & David Mercer, Sociology for Social Workers, 2nd edition
Social Work and Disability
PETER SIMCOCK & RHODA CASTLE
polity
Copyright © Peter Simcock and Rhoda Castle 2016
The right of Peter Simcock and Rhoda Castle to be identified as Author of this Work has been asserted in accordance with the UK Copyright, Designs and Patents Act 1988.
First published in 2016 by Polity Press
Polity Press65 Bridge StreetCambridge CB2 1UR, UK
Polity Press350 Main StreetMalden, MA 02148, USA
All rights reserved. Except for the quotation of short passages for the purpose of criticism and review, no part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without the prior permission of the publisher.
ISBN-13: 978-1-5095-0830-3
Library of Congress Cataloging-in-Publication Data
Names: Simcock, Peter, author. | Castle, Rhoda, author.
Title: Social work and disability / Peter Simcock, Rhoda Castle.
Description: Malden, MA : Polity Press, 2016. | Series: Polity social work in theory and practise | Includes bibliographical references and index.
Identifiers: LCCN 2015031160| ISBN 9780745670195 (hardback) | ISBN 9780745670201 (paperback)
Subjects: LCSH: Social work with people with disabilities. | Social service--Practice. | BISAC: POLITICAL SCIENCE / Public Policy / Social Services & Welfare.
Classification: LCC HV1568 .S536 2016 | DDC 362.4/04532--dc23 LC record available at http://lccn.loc.gov/2015031160
The publisher has used its best endeavours to ensure that the URLs for external websites referred to in this book are correct and active at the time of going to press. However, the publisher has no responsibility for the websites and can make no guarantee that a site will remain live or that the content is or will remain appropriate.
Every effort has been made to trace all copyright holders, but if any have been inadvertently overlooked the publisher will be pleased to include any necessary credits in any subsequent reprint or edition.
For further information on Polity, visit our website: politybooks.com
Introduction
Social work with disabled people is an area of practice that has seen significant change. This change is the result of not only legislative reform and new policy initiatives but also the work of the disability movement in challenging our understanding of ‘disability’ and what it is that disables people. Undoubtedly, it is a complex yet rewarding specialism. However, while social work is part of many disabled people’s lives, it has received limited attention in practice and has been marginalized in academic and professional literature. Social work for disabled adults has been described as an underfunded ‘Cinderella service’, and practitioners have reported having limited experience of working with disabled young people. Disability activists, disabled people’s organizations, academics and commentators have all questioned the role of social workers in the lives of disabled people; this has been the case particularly in adult social care services as a result of increased personalization and self-directed care. Disabled people can now commission, coordinate and manage their own care and support directly.
Not all disabled people need social work intervention. Furthermore, as highlighted by many people with physical and sensory impairments, social work services and social work itself have been disabling barriers in their lives. However, this book explores how social work practice can, and indeed does, contribute to the promotion of disabled people’s rights and the securing of positive outcomes. We suggest that such positive practice requires the following: a focus on human rights; critical reflection on the disability movement’s critique of social work; a full understanding of the barriers that disable people with impairments; and working in partnership, as equal allies, with disabled people and their organizations.
Social workers spend considerable time supporting people with physical and sensory impairments, both older people and those of working age, yet the amount of attention given to these issues in the professional literature seems to lack balance. There are also significant numbers of disabled children, many of whom have physical impairments. As such, while other social work texts consider learning disability, in this book we focus on practice with people with physical and sensory impairments. We do not mean to suggest that social work intervention is needed solely because of such impairment; however, this focus could still be considered problematic. Most disability studies scholars would agree that disability is about more than the nature of a person’s impairments. If it is the barriers that disabled people face in the social and physical environment that are crucial in shaping their experience, why should demarcation between different types of impairment be relevant? While we are sympathetic to this argument, we still consider that there is room for consideration of disability associated with physical and sensory impairment. The nature of the barriers and restrictions that disabled people face results from the interaction between the environment and the individual. There is wide variation between the restrictions that people with different atypical physical attributes will face, and variation again between their experience and that of people with learning disabilities.
Although we have chosen to concentrate on what we consider to be a neglected area in the professional literature, a rigid dividing line between physical and intellectual impairment is untenable. People with learning disabilities may also have physical impairments, and some ‘syndromes’ and degenerative conditions have both physical and intellectual manifestations. This is particularly marked in the case of disabled children, many of whom have a learning disability; in fact this is the largest impairment-related group within social care services for disabled children. Children with complex health problems whose parents require support with day-to-day care may also have learning disabilities. Therefore, despite the primary focus of the book, we have attempted to take a holistic approach to the experience of disabled people. This is in keeping with the need for professionals to avoid compartmentalizing people’s lives in ways that are unhelpful and adds to the stress experienced by individuals and families. One of the potential strengths of social work is the capacity to take a holistic view of the barriers, difficulties and strengths of people’s situations.
The book is divided into three parts. Part I, ‘Perspectives: Understanding Disability’, covers chapters 1 to 4. Drawing on lived experience, theory and models, law and policy, this section examines how disability is, and continues to be, defined, explained and understood. We highlight the implications of these definitions and understandings for social work practice through a series of case profiles. Chapter 1 is co-written with a disabled woman who has experience of social work intervention as both a child and an adult. It offers personal reflections on a range of issues, which are then further explored throughout the book. Starting with a brief overview of the historical context of understandings of disability, including early sociological approaches, chapter 2 explores theoretical perspectives, with a particular focus on theory arising from the experiences of disabled people. In chapter 3 we consider the knowledge that can be gained from taking a life course perspective on disability and analyse the implications of this knowledge for social workers. The final chapter in this part, chapter 4, offers a critical analysis of the interface between law, policy and social work in relation to practice with disabled people. Starting with a brief overview of the historical development of law and policy in this area, we go on to consider contemporary legal frameworks, such as the Care Act 2014, the Social Services and Well-Being (Wales) Act 2014 and the Children and Families Act 2014, and highlight the importance of the UN Convention on the Rights of Persons with Disabilities.
Diversity, inequality and oppression are the focus of Part II, ‘Diversity, Inequality and Disability’, which consists of chapters 5 and 6. In chapter 5 we explore the research on inequalities and oppression experienced by disabled people, considering issues such as discrimination, employment, victimhood of crime, access to education, debt and poverty, and access to health and other public services. The place of social work in addressing and challenging discrimination and oppression in this context is outlined. Challenging assumptions of homogeneity among disabled people and acknowledging the need for social workers to consider the impact of characteristics such as race, gender and sexual orientation, chapter 6 considers the experience of disability across a range of diverse communities. It then turns to examine disability as a dimension of human diversity itself and highlights the implications of this knowledge for social work practice.
Part III, ‘Disability and Social Work Practice’, consists of chapters 7 to 11 and addresses social work functions, roles, processes and practice with disabled people. Each chapter here highlights strategies for best practice. Chapter 7 considers the importance of strong communication skills. In chapter 8 we focus on social work practice with disabled children, exploring core functions such as assessment and intervention and also practice with looked after disabled children, while in chapter 9 we look at the social work role with disabled adults in an increasingly personalized system of adult social care. Arguing that social work has a central role in safeguarding both children and adults, chapter 10 explores this function in the context of disability settings, with a particular spotlight on the concepts of risk and vulnerability. Chapter 11 concludes this section by examining collaborative practice in this field, before a final conclusion is offered at the end of the book.
The chapters contain case profiles, many of which have been drawn from our own practice experiences, to illustrate key points and practice implications. Additionally, the ‘voices’ of disabled people, social workers and carers are included throughout to encourage the reader to reflect on lived experiences. Links are made to relevant domains of the Professional Capabilities Framework (PCF) and sections of Professional Codes of Practice. We end each chapter with a summary of the key messages, activities for reflection and independent study, and suggested further reading.
The book is intended for use by qualifying students on social work degree programmes, students on post-qualifying courses seeking to develop specialist knowledge, and current social work practitioners involved with disabled people. Though the focus of the book is on social work, it may also be of interest to those on health and social care courses, third-sector practitioners, advocates, advice workers, and service users and carers.
PART IPERSPECTIVES: UNDERSTANDING DISABILITY
1Lived Experience of Impairment, Disability and Social Work
Co-written with Helen Burrell
Introduction
Now in my fifties, I have had physical impairments since the age of twelve, following a fall during cross-country running at school. Slipping on the wet grass, I did the ‘splits’ and dislocated my hip; however, this diagnosis didn’t come until some months later, as the ongoing pain in my hip was dismissed as growing pains. Since I was in pain and constantly falling over, my mother pushed the matter with the medical staff, and I got to see a consultant who diagnosed the dislocation. Surgery followed, and I was on crutches for six weeks. As I turned thirteen, I remember experiencing further pain in my hip. This was initially dismissed, and I was told I was simply seeking attention. After further falls and what can only be described as agonizing pain, my mother took me to casualty. An X-ray identified that the blood supply to the hip had been affected and the bones had disintegrated; the screws implanted during previous surgery were also poking out where they shouldn’t have been! I remember spending nine weeks in hospital, on an adult ward – a thirteen-year-old girl surrounded by older women having hip replacements.
I have had further surgery throughout my life, and ultimately, after a series of unsuccessful hip replacement operations, the hip joint was removed. I recall a conversation with the Benefits Agency, which advised me that I must have a hip joint as ‘hip replacement’ was the only option on the benefit application form on their system. I assured them I didn’t. I now mobilize with either elbow crutches or a wheelchair. As I have developed additional conditions over time, my consultant is insistent that I use the wheelchair far more than I have done previously; I have mixed feelings about this. I also have mixed feelings about and experiences of social work and social workers.
First encounters with social work
Having spent long periods of time in hospital as a child, I missed a lot of my schooling. My mother was concerned that I wasn’t having any teaching, but my old school would not take me back; because of my crutches I was described as ‘a liability’ and ‘a risk’ to myself and others. My mother was advised to make contact with social services with a view to my attending a special school. She visited a special school and was very concerned: ‘Helen will be bored to tears here.’ She wanted me to attend mainstream school and contacted the local authority, highlighting my need for appropriate schooling.
I remember a social worker visiting my home around this time. I recall her greeting me, but then being sent to bed while she and my mother discussed my situation. I believe she was completing some sort of assessment. I heard my mother take her to the kitchen, saying, ‘This is where Helen has to wash, in the sink.’ The bathroom upstairs at home was no longer accessible. Fortunately we had a downstairs toilet, but unfortunately, as I couldn’t bend my knees when I sat on the toilet, I couldn’t shut the door; imagine the impact on my dignity, a teenage girl with such limited privacy. I recall my mother putting up net curtains in the kitchen so I wouldn’t be seen as I washed. The visiting social worker advised that, as I couldn’t get up the stairs, this was acceptable. My mother explained her concerns about my lack of schooling and also my mobility, telling the social worker that I couldn’t walk far on the crutches. Following this visit, a wheelchair was arranged for me, and the social worker also facilitated arrangements for a home tutor, who visited three times a week. Though I hardly spoke to her, the social worker had made things happen that made life somewhat easier.
I recall my home tutor teaching me outside in the garden, as she was pregnant at the time and experienced bouts of morning sickness; she felt less nauseous outside in the fresh air. After a period of time, a place at a mainstream school was identified for me. It was a small school, just for girls, and the headmistress was very supportive. Once I was there I don’t recall any further involvement with social work as a child; my next encounters with social workers would be in my adult life.
Encountering barriers
My place at school was sorted, but getting me there proved quite a challenge. The school I attended was a long walk away, and my mother spent the spring and early summer months pushing me there in the wheelchair; with the bad weather coming, she believed this would no longer be possible and contacted social services to request support. The solution that was made available to me was a place on the bus that transported children to the special school, the school that my mother did not want me to attend. Its hours were shorter than those at my mainstream school, and the bus times reflected this; I was dropped off at my school at 10.00 a.m., thus missing early morning lessons, and collected for the home run at 2.30 p.m., missing another hour of schooling. I had already missed two years of my education because of time spent in hospital and now I was missing over a day a week. Fortunately, a chemistry and biology teacher saw my interest and potential in her subject areas and spent additional time with me over lunch breaks, helping me to catch up.
My curiosity in the sciences continued, and I developed an interest in pursuing a nursing career. This interest was quashed by the school careers advisor: ‘People like you don’t go into nursing.’ I didn’t challenge this advice and resigned myself to the fact that I wouldn’t be a nurse because I was disabled. Some time later, the local NHS organized an information event showcasing the range of career options available and offering opportunities to shadow different professionals. My curiosity and interest motivated me to attend, and I ended up spending time with the radiographer. My interest in nursing was replaced: I had discovered my vocation. After further study and training, I achieved my goal and became a qualified radiographer. It was a career I loved and one I continued in for some years. It gave me professional identity, purpose and financial independence. However, it wasn’t to last to a ‘normal’ retirement age. I had ongoing health problems and further physical impairments and ended up taking early retirement on health grounds. Looking back, it all seemed to be something of a fait accompli; I recall no appeal, no fight with the health authority – just a tacit agreement that I would take my money and retire.
While this was the end of my radiography career, it was certainly not the end of my working life. I have designed and delivered ‘disability awareness’ training, provided consultancy work, led expert patient programmes, and coordinated service-user involvement in public services and higher education institutions. I have also taught on a range of health and social care programmes at two universities. Securing employment has not always been easy, however, and I have often found myself on temporary contracts or short-term projects; while enjoyable, such work reduced my financial security and often complicated my welfare benefit entitlement. Learning to drive and having an adapted vehicle has facilitated my engagement in all kinds of activities, enabling me to travel independently with much greater ease. However, even a planned shopping trip to the supermarket becomes problematic when the ‘disabled’ parking bays are all taken (and not always by disabled parking permit holders!). What may appear to be nothing more than difficulty finding a parking space is actually a wasted journey, a period of stress, and a necessary rescheduling of the weekly shop.
Models of disability, law and policy
Following changes in the law relating to chronically ill and disabled people, I recall receiving a leaflet through the post that outlined health and care pathways. The diagrams showed a range of services and support through which people would ‘travel’; the end of the pathway was ‘being cured’. In tiny letters at the bottom of the leaflet were the words ‘Not all illnesses can be cured’, followed by a full stop. As I re-read the pathways, I thought, ‘Well, doesn’t that just sum it all up!’ Disabled people are put into the pathway machine and they come out cured or not cured. The ‘cured’ person carries on into education, training and employment; the ‘not cured’ person is given a full stop. The medical staff had been unable to fix me. I had not been cured and I had been given a full stop.
I started to volunteer at a DIAL (Disability Information and Advice Line) service and underwent a six-week training course to support my involvement. During the course I met a wheelchair user from the Greater Manchester Coalition of Disabled People (a woman with whom I am still great friends). She spoke about these ‘models of disability’ – the medical model and the social model. Hearing her speak, I suddenly started to put the pieces together. Up until that point, I saw my difficulties as entirely my fault: I must have done something wrong to end up this way. The hip replacements didn’t work and I couldn’t walk; doctors had tried to fix me but had not succeeded. This, I was told, reflected a medical model of disability. Hearing about the social model was a ‘Eureka moment’. I realized that the problems I had encountered (missing education, not being able to secure employment, being made redundant from the health authority with no appeal or fight, problems with housing adaptations) were not my fault; they were a result of society’s inability to accommodate me as a physically impaired wheelchair user. I felt as if I had fallen asleep in one world and woken up in another. The medical model glasses through which I viewed the world had been replaced by social model glasses. One life for me had stopped and this new life was opening up; just as if I was emigrating, I needed to do my research about this new world I had come into, this social model of disabled Helen. It was a new language, it was new values, it was a new world. I finally realized that my illness and impairments played only a small role in my daily challenges. It was the barriers imposed by society that truly disabled me, and, in the 1980s, the most challenging of all of these were other people’s attitudes.
It was suggested that I go on a disability awareness training course led by the Disability Coalition, and I revelled at the chance to learn more about this new world. Eight people were there, all training to become trainers for the coalition. The excitement of the new social model world, however, became complex and confusing. As the training programme developed and I heard the views and perspectives of others, for the first time ever in my life I was ashamed to tell people what job I had done. I realized that a lot of the people who were involved with the training didn’t see healthcare workers in the same light as I did. We had one or two lively discussions about healthcare and health professionals’ attitudes – but I had been a healthcare professional! It was then I realized that the social model carried with it a great deal of responsibility. I also realized that people with acquired impairments, especially people like me who acquired increasing impairment over a period of time through childhood and into adulthood, often had different experiences from those with impairments from birth or early childhood. I sometimes found it quite intimidating being around people with very strong views on the social model, and at the end of the training I didn’t sign up to be a trainer for the coalition. I didn’t feel comfortable. Life – my life – wasn’t black and white; there were and are many shades of grey.
Since that health and care pathways leaflet came through my door, there have been numerous legal and policy changes. For someone who doesn’t take a lot of notice of policy and law, I have to say I really started to notice changes after the Disability Discrimination Act came into force. People may think of parking and accessible toilets, but for me it was transport. I remember travelling on a train in the guard’s van. You couldn’t travel on a train in a wheelchair, so I was in the unheated guard’s van. I remember sitting near the window, waving out so I wasn’t forgotten and taken to the wrong place! Now I can sit in a train in a proper wheelchair space and travel comfortably.
Later in life I began delivering training on the Disability Discrimination Act. I had great hopes for the Act and thought it would help bring down barriers. I also thought it would help me find a job and receive realistic welfare benefits; however, it hasn’t done any of that. It is the cheap and the superficial that has been addressed, not the majority of barriers. As a wheelchair user, I still can’t get into half the shops in my town. I’m so disappointed, because I really had big hopes.
Life as a disabled adult
I was in my mid- to late twenties by the time I had undergone the unsuccessful hip replacements and my hip joint was removed. At this point I recall being visited by a social worker. He queried why, following the surgery, I wasn’t moving back ‘home’ to live with my parents, so that they could help me. I hadn’t lived at ‘home’ for some years at that time. Why would I want to sell my house now? I hadn’t considered this. The social worker felt it would be so much easier because my parents ‘could look after me’. I felt that I was being seen as the ‘perpetual child’ in being asked to consider such a move; throughout my life I have met other disabled adults who have been encouraged to stay at home with parents or return to live with them. I feared that I’d never get the chance to grow up (what I term ‘Peter Pan syndrome’) and that I’d have limited experience of good and bad things. Everyone thought that what I had gone through was bad enough – but we all have to go through bad things and difficult experiences. They make us who we are; they have made me who I am. They haven’t taken away from my life, they have added to my confidence. I’m far more self-assured about what I believe and what I stand for.
I remained living in my own home and the social worker facilitated access to what is now called a Disabled Facilities Grant (DFG). The outside toilet and coalhouse were converted into an accessible toilet and shower room. I was also issued with a raised toilet seat and a perching stool and advised to purchase two ‘helping hands’ to enable me to put my stockings on. No more sitting on the toilet with the door open, no more washing in the sink with just a net curtain between the outside world and me! But the equipment was all so clinical looking: white rails that didn’t go with the décor, halls cluttered with medical equipment and supplies. My home was important to me, as was its style. As a woman, it was important to me. But I’d discovered that DFG funding didn’t cover personal choices relating to décor when it came to equipment, which was to meet my professionally identified needs.
While I now associate my dissatisfaction with the equipment with gender issues, it was really only after I started going to the Greater Manchester Coalition for Disabled People (GMCDP) and met other disabled people that I became aware of unsettling issues around being a woman with a disability. Even deciding on a term for myself was confusing. Was I a disabled woman, a woman with a disability or, as before my disabling event, still a woman? I began to research the women’s movement and to feel that, because of my impairments, I wasn’t a woman anymore. Would my impairment prevent me carrying out my ‘womanly’ roles and functions (wife, mother and partner)? I began to feel that it meant that I should not have children; doing so might run the risk of their being removed by social services.
When I sought help from the local hospital for treatment for my endometriosis, I went in my wheelchair. The consultant told me that getting rid of that ‘monthly mess’ (my period) via a hysterectomy was the much better option and would give me a much improved quality of life. I was just thirty-five years old at the time, but the ‘expert’, the consultant, made me think this was the best idea. It was only afterwards that I discovered that a friend, with no physical impairment, also met with the same consultant for the same health problem. She was offered a raft of hormone treatments and, when she asked about having a hysterectomy, she was told that this was the very last resort for someone of her age; she was forty-two.
I remember talking to a disabled friend about these experiences, and she suggested I should read the work of Jenny Morris (cited in this book). Her work opened my eyes to so many issues and highlighted how certain models of disability had robbed me, and so many disabled women, of our status as women.
Positive social work practice: my perspective
For me, best practice has always been centred on positive relationships. Social workers who took the time to build positive and sustainable working relationships were those I valued the most; inevitably, they were also the ones who were able to secure positive outcomes with and for me. Social workers need to build relationships that are founded on genuine care and compassion, trust, professionalism, and excellent communication skills.
Genuine care and compassion I value social workers who create an atmosphere of care and empathy, not sympathy and superficial kindness. Social workers must recognize that I have knowledge, skills and expertise in my own situation and work in partnership with me on equal terms. In my experience, such approaches have not only secured positive outcomes but also built my confidence. I need to know the social worker will act as a strong advocate for me, or support me to advocate for myself, in order to promote and protect my human rights.
Trust During contact with social workers, particularly through assessment processes, I have needed to share private thoughts, very personal information, my fears, and my concerns. In order for a social worker to enable me to share this information, I need to know that they will protect my right to privacy and maintain confidentiality appropriately.
Professionalism I do not equate professionalism with unnecessary formality but, rather, with appropriate confidence in role, suitable appearance, and honesty. I always welcome positive eye contact, a pleasant demeanour, a smile. I want up-to-date information and social workers who are knowledgeable; it doesn’t matter to me if they have to check information on the computer or ring the office, provided what they tell me is the truth. Recognition that I am a source of knowledge and expertise on my own life must not lead to assumptions about what I know about social care systems: sharing and exchanging knowledge is key to an equal social worker–service user relationship.
Communication skills Social workers do not need good communication skills; they need outstanding ones! I recall one less than positive experience during a social work assessment in which I felt ‘talked at’. There was very little inclusion in the interaction, which involved questions of a personal and emotive nature. I needed time to think, reflect and consider my responses; however, while I was considering how to respond, the social worker was already writing something down, smiling, as she said, ‘I fill hundreds of these things in. I’ll read it back to you at the end.’ There was an immediate sense that ‘this is how it was going to be done’. I felt I had limited options to alter things once the assessment form was filled in and signed off; time was short and she needed to get back to the office. This approach led to some unhelpful and awkward exchanges. For example, following a question about my personal care needs, the social worker said, ‘I can see that you are on your own at the moment, but do you have a man friend who can help out?’ I responded, with some frustration, ‘I might well have a “man friend”, but I am not going to ask him to help me get washed and dressed!’ ‘Oh’, she replied, ‘I didn’t mean like that. I meant going out socializing.’ I reminded her that we had been talking about personal care, but she was already moving on with ‘her’ form. Assumptions have also been made that, because my impairment is physical (and visible), I have no particular communication needs; not once in all my years of having contact with social services and social workers has anyone asked about my dyslexia and the resulting difficulties it causes me with the written word.
Concluding thoughts
I am woman with physical impairments. These impairments result in some restrictions and sometimes cause me pain and discomfort. I am also a disabled woman; physical barriers, attitudinal barriers, social and economic barriers have all disabled me in the past and continue to do so. I am also a Christian, a niece, a carer, a qualified radiographer, a friend, a theatregoer, a home-owner. I value social workers that see me as this person, not just as a list of medical conditions and limitations. I value social workers who recognize that my need for their involvement is not always related to my physical impairment. And I value social workers who protect and promote my rights – not just my rights as a user of social work services but my fundamental human rights.
Activities
Make a note of your initial thoughts and feelings after reading this personal account. Revisit your notes as you read other chapters in the book and reflect on how they relate to Helen’s experiences.
What issues does the chapter raise that should be of concern to social work?
How do Helen’s views on positive social work practice relate to the domains of the Professional Capabilities Framework (PCF)?
Suggested further reading
Beresford, P., Croft, S., and Adshead, L. (2008) ‘We don’t see her as a social worker’: a service user case study of the importance of the social worker relationship and humanity, British Journal of Social Work, 38: 1388–407.
Evans, C. (2008) In practice from the viewpoint of disabled people’, in Swain, J., and French, S., eds, Disability on Equal Terms. London: Sage.
2Theories and Models of Disability
Issues considered in this chapter:
The way that disability has been conceptualized
The social model of disability and its critique of existing disability policy
Critiques and further developments of the social model of disability
The search for a theory of disability
The implications of theories and models for social work practice
Introduction
This chapter begins by exploring the way that understandings of disability have developed in their historical context and how these have influenced responses to disability. Social work practice with disabled people does not take place in isolation from the beliefs held in contemporary Western societies about disability, and these beliefs have inevitably been influenced by our history and culture. Having considered this, along with early sociological approaches to disability, the chapter will continue by describing the major reconceptualization of disability brought about by disabled activists and academics. The result was the social model of disability, which has been integral to the disability movement in Britain (Campbell and Oliver 1996). It is also of fundamental importance for social work, as it has been influential in the reform of a range of policies, including social care. However, the social model itself has been subject to critique. This has resulted in some spirited debates between the originators of the model and those who have argued that it needs to be developed (Thomas 1999) or even jettisoned (Shakespeare 2006).
The relevance of these theoretical debates for social work lies in their links with professional practice. The way that disability is defined and explained, and indeed the language and terminology adopted, can have a significant bearing on policy, the experience of disabled people, their interactions with professionals, and their relative status in wider society. This is further explored in chapters 4 and 5. Arguing that the social model of disability should inform social work practice, Oliver et al. (2012: 20) point to the dangers of current claims that theory should arise from practice: ‘… to rely on practice to inform theory when practitioners may have already internalised an inappropriate model is to perpetuate the problem, for it would merely result in the reinforcement of the individual model of disability.’
This chapter will focus particularly on theory arising from the experience of disabled people. As Ife (2012: 216) observes: ‘Because of [social work’s] grounding in the world of day-to-day practice, it cannot afford theoretical formulations that are not similarly grounded in lived reality.’ Also, reflection in social work involves examination of the (often unstated) assumptions that have influenced practice (Knott and Scragg 2007) (PCF 6.4). In order to make sense of the situations in which they practise, social workers sometimes draw explicitly on theory, but also often on ‘common-sense’ understandings, ubiquitous in our culture.
Case profile: Marion
Marion is fifty-five, lives alone and has severe arthritis. This has affected her mobility, and she uses a wheelchair outdoors. Her children have grown up and left home, and two years ago her marriage ended. This followed a period when friends and neighbours suspected that she was the victim of domestic violence. Marion has managed to earn her living as a clerical worker for the council. However, her arthritis has recently become worse and has affected her hands, which has made it very difficult for her to do her job. She has become exhausted and depressed and is at present on long-term sick leave. She feels socially isolated and misses the company of colleagues. Because of the arthritis in her hands she is struggling to cope at home, and she was recently seen at Accident and Emergency after scalding herself when trying to lift the kettle.
If you were the social worker asked to assess Marion, what would you identify as the main problems in her situation, and what do you consider has caused them? What do you think would be helpful in improving her situation? It would be very easy to assume that her difficulties all arise from her arthritis. If it was not for this she would be able to work and do everything for herself at home. Marion is indeed affected by severe arthritis and may be depressed because of the loss of physical function that it involves. As the social worker allocated to her, you might ask whether she is receiving all the medical treatment she needs, together with any necessary physiotherapy. This might improve her condition and enable her to carry out the ordinary tasks involved in everyday living. You might also assess whether she needs care workers to support her.
Neither of these responses is necessarily wrong. Marion may indeed benefit from further medical treatment and assistance in the home. However, both are based on the assumption that her problems arise from her medical condition and her inability to carry out the tasks of everyday living for herself. In other words, this is a problem concerning Marion as an individual. She is a disabled person, and her disability is the result of her arthritis. However, there are several indications in her story which suggest that her problems are also caused by extrinsic factors, or factors outside herself. Could her employer have made adjustments to her role and provided equipment? If so, her period of sick leave might have been avoided. If she has been the victim of domestic violence, how has this affected her sense of self-worth? Has this, along with her current difficulties in seeing friends and colleagues, played a role in her depression? How accessible is her home, and is there any specialist equipment that would make it easier for her to carry out domestic tasks? Does she have access to suitable transport to enable her to travel into town and participate more in community life?
This discussion has only begun to consider the issues that might be impacting on Marion’s situation. There are other issues that could be raised. However, it is sufficient to demonstrate that the same situation can be seen through more than one lens. These lenses are the assumptions, or implicit theories, that are held about disability.
The assumptions that people hold about the nature of disability are likely to have been influenced by the society around them. The views of family and friends, and sometimes personal experience, may play a part in this. The way that disabled people are represented in newspapers, literature, films and television programmes also exerts an influence. Disabled people have been portrayed as ‘pitiable and pathetic’ (Barnes 1992), unable to take control of their own lives and deserving of sympathy. The birth of a disabled child has been represented as a ‘tragedy’ for parents, involving many disappointments (Kandel and Merrick 2003), which relates to another of the stereotypes identified by Barnes (1992): ‘the disabled person as burden’. Oliver (1990) maintains that disabled people have been over-represented among the ‘villains’ of fiction or as ‘superheroes’ who achieve great things through exceptional determination, personality or talents. Examples would be the evil Dr No, in Ian Fleming’s novel of the same name, and Christie Brown in the film My Left Foot, who becomes a successful artist by ‘transcend[ing] pity through grit, will, and self-determination’ (Hayes and Black 2003: 115). As Barnes and Mercer (2010) point out, disabled people tend not to be portrayed as ‘ordinary members of society engaged in everyday activities’.
These examples portray disability as something to be avoided if at all possible and, if not, as something to be heroically ‘overcome’. However, the way that disability is defined and how the boundary is drawn between those whose need is legitimized in terms of eligibility for welfare services and benefits is clearly important in terms of policy and practice.
What the examples above have in common is the underlying assumption that disability is an attribute of the individual. Although recognition as a disabled person denotes a particular social position, in practice it is dependent on individual ‘deficits’ that are assessed by medical examination. Official responses to disability have included social work practice. It is pertinent that the social model of disability was associated with a radical critique of the community care system implemented by social workers and, eventually, with the introduction of new forms of policy and practice. However, the social model itself has been subject to challenge, and this indicates that understanding of disability continues to be ‘work in progress’.
The historical context
Historical comparisons need to be made with care, as what constitutes ‘ability’ and ‘disability’ can vary between cultures (Edwards 1997). For example, Depoy and Gilson (2008) suggest that, due to widespread poverty during the Middle Ages, only the most extreme deviations from the typical were regarded as exceptional. Conversely, in the late nineteenth century, the introduction of compulsory schooling is thought to have led to the categorization of those children who could not benefit from the standard approach to education. Children who might not have attracted official attention previously became classified as atypical, sometimes with the label of ‘feeble mindedness’. For example, when exploring the historical background to ‘special’ education, the Warnock Committee reported:
Mental disability was for many children no substantial handicap in coping with the simple demands of everyday life in a largely uneducated and relatively uncomplicated world … Their needs first became apparent after 1870 when large numbers of children of below average or poor intellectual ability entered public elementary schools. Many of them made scarcely any progress. (Department of Education and Science 1978: 12)
In addition, historical responses to disability have been linked to explanations for atypical bodies (Depoy and Gilson 2008). In ancient Greece, for example, those injured in war were treated more favourably than others with atypical bodies, while babies with the most severe and visible ‘deformities’ were left to die (Mallett and Runswick-Cole 2014). During the Middle Ages, atypical bodies were often associated with the supernatural. Many people put to death for witchcraft were likely to have been suffering from neurological or emotional disorders (Winzer 1997). Conversely, the presence of those with atypical bodies was also thought to be an opportunity from God to demonstrate charity – hence the beginning of faith-based care.
The trend from the seventeenth century onwards was towards institutionalization for the protection of the non-disabled population. By the nineteenth century this trend towards segregation had intensified, with an increase in institutionalization and the promotion of ‘freak shows’, which allowed the middle classes to view those with atypical bodies (Braddock and Parish 2001). However, this existed alongside responses motivated by Victorian notions of Christian charity.
Modern disability scholars have maintained that the rapid progress of industrial capitalism exacerbated the exclusion of disabled people. The growth of large residential institutions in Victorian Britain has been associated with the need to deal with those who either could not or would not conform to the new disciplines of wage labour and therefore were regarded as potentially disruptive. Whereas disabled people could make a contribution to production in an economy based on cooperative and communal approaches to agriculture and small-scale production, in a system based on individualized wage labour they were excluded (Finkelstein 1980). Also associated with institutionalization was the rise in status of the medical profession, with its developing capacity to classify ‘deviant’ groups. This offered opportunities to distinguish ‘scientifically’ between those whose incapacity was no fault of their own (for example, those who today would be regarded as ‘disabled’ or ‘mentally ill’) and those whose failure to support themselves was due to idleness and irresponsibility.
This medical approach, which interpreted diversity in terms of pathology, was linked to the concepts of ‘able-bodiedness’ and ‘able-mindedness’, which were criteria for inclusion in employment in Victorian Britain (Oliver 1990). Davis (1997) argues that the concept of normalcy, which gained currency in the mid-nineteenth century in England, has created the ‘problem’ of disability and has led to the pathologizing of atypical bodies. In explaining how disability became associated with ‘abnormality’ and exclusion, Davis describes the rise of statistics. The notion of ‘normality’ arose originally from the desire to eliminate error from observations in the physical sciences. However, the Belgian statistician Quetelet (1796–1847) identified that the same ‘law of error’ could be applied to human attributes. It was a short step from this to the formulation of the concept of the ‘average man’. The norm came to be seen as kind of ideal in itself and to be associated with progress and the perfectibility of the human population. For example, Quetelet is quoted as follows:
One of the principal acts of civilization is to compress more and more the limits within which the different elements relative to man oscillate. The more that enlightenment is propagated, the more will deviations from the mean diminish … The perfectibility of the human species is derived as a necessary consequence of all our investigations. Defects and monstrosities disappear more and more from the body. (Cited in Davis 1997: 12)
This is the context for the analogies that were drawn between the disease of individuals and that of the nation. Although this is a false analogy (Davis 1997), it found favour at a time when industrialization appeared to require uniform, fit and interchangeable workers.
Galton, the leading eugenicist, was in fact the originator of the statistical term ‘normal distribution’. In ‘normal distribution’, when measurements taken from a population are plotted on a graph, the majority fall within a symmetrical ‘bell curve’ that encloses the average measurement. Those whose measurements fall outside the bell curve are the extremities outside the ‘normal’ range. In terms of Darwin’s theory of natural selection, disabled people were evolutionary ‘defectives’, a belief which underpinned attempts to control their reproduction and promote their segregation in institutions. They were also grouped together with a range of other ‘defectives’ displaying ‘undesirable’ characteristics, including criminality, alcoholism and destitution. In this way, disability was conflated with ‘depravity’ (Davis 1997). This led to calls for the sterilization of people with a wide range of atypical attributes. To the eugenicists, heredity was thought to account for all variation in human beings, to the exclusion of any environmental influence. Therefore, ‘marks of physical difference became synonymous with the identity of the person’ (ibid.: 15).
The influence of eugenics and individualism can be seen in early modes of social work practice. For example, Mary Dendy (1855–1933), a member of the Charity Organization Society, described her motivation for setting up permanent institutional care for children who were ‘mentally deficient’.
I rather suddenly realized that nearly 2 per cent of our elementary school children would never be fit to undertake the direction of their own lives. I also realized that three-fourths of our charitable work must be absolutely wasted if we could not, by some means, take possession of these feeble lives, and make certain that they should not have the opportunity to reproduce themselves. (Dendy 1903)
The Charity Organization Society lobbied the government for the introduction of a legal framework for such segregation, resulting in the 1913 Mental Deficiency Act. While learning disability is not the focus of this book, physical and mental impairment was conflated in some nineteenth- and early twentieth-century policy and legislation, with epilepsy in particular often being dealt with in conjunction with ‘mental deficiency’ – for example in the report of the Departmental Committee on Defective and Epileptic Children in 1898. As described in chapter 4, ideologies supporting segregation continued to exert an influence well into the latter half of the twentieth century.
Social theory and disability
Abberley (1993) has identified that it is ‘abnormality’ which disabled people share with oppressed groups such as women, black people, older people, and LGBT people. He further remarks that these ‘abnormal’ groups may in fact constitute the majority of the population. This seems to indicate that the processes through which such groups come to be defined as ‘abnormal’ requires explanation in social rather than individual terms.
Disabled activists and academics have critiqued the way in which disability has been understood as an individual ‘personal tragedy’ (Oliver 1990). They have argued that many of the consequences for disabled people result not from their impairments but from the oppressive social relationship that is ‘disability’. This distinction between disability and impairment is crucial to the social model of disability, developed by disabled activists, and has been described as follows: ‘Disability is something imposed on top of our impairments, by the way we are unnecessarily isolated and excluded from full participation in society. Disabled people are therefore an oppressed group in society’ (UPIAS 1976: 14). The main premise of the ‘social model’ is that the restrictions experienced by people with impairments result from physical and social environments which take account only of the requirements of non-disabled people (Barnes 1991; Oliver 1996b).
However, the social model is not the only attempt to explain disability in terms of social processes and structures (Priestley 1998a). The social model, as described by Finkelstein (1980) and Oliver (1990), considers disability ‘as a product of the material conditions of life at a particular socio-historical juncture’ (Thomas 2007: 53), in particular the restructuring of working life that occurred with the industrial revolution. As such it has been described as materialist, while other idealist theories focus on the way that responses to impairment have been shaped by human values and beliefs. The following paragraphs explore these varying approaches in more detail.
It is possible to consider the theorization of disability as a chronological process which runs alongside, and is often integral to, disability politics and the experience of disabled people. It was life in residential care that informed the work of Paul Hunt (1966b), whose critique of the controlling ethos of much staff practice is described in chapter 4. Sociological study of disability before the development of the social model utilized a range of theoretical frameworks, but, as Thomas (2007) has maintained, the approach of the medical sociologists who carried out most of the theoretical and empirical work on disability and ‘chronic illness’ was, with few exceptions, informed by a deviance paradigm which did not distinguish between disability and impairment and sought to explain the deviance of disabled people rather than to challenge it.
For example, sociologists have explored the role of disabled people in society, taking a functionalist approach. This was influenced by work on the ‘sick role’ within society by Parsons (1951), who argued that the effective operation of the social system was dependent of individuals carrying out their social roles. Arguing that sickness was disruptive to the social system, and therefore deviant, Parsons defined a sick role that permitted those accepted as ‘sick’ to be relieved of ‘normal’ responsibilities. However, this was on condition that medical diagnosis was sought and professional advice followed, so that there would be a prompt return to health and productivity. As this fitted best with short-term acute illness, a more permanent ‘impaired role’ was later identified (Siegler and Osmond 1974). This was associated with the denial of full membership of society. Similarly, a ‘rehabilitation role’ (Safilios-Rothschild 1970) set out the social expectations of those undergoing rehabilitation. For example, they must maximize their remaining abilities, assume as ‘normal’ a function as possible, cooperate with professionals, and adapt to their new identity. This approach has had a continuing influence on policy and practice (PCF 5.1).
Levitas (1996) and Prideaux (2005) both linked ‘welfare to work’ policies introduced by New Labour (and subsequently intensified under the Conservative–Liberal Democrat coalition government) to functionalist sociology. This stresses social cohesion through integrating people into required roles. The moral aspect of such an integrationist discourse (Levitas 1996) includes attacks on irresponsibility and welfare dependency, both of which are perceived as ‘deviant’. The social exclusion of disabled people may once have been ‘functional’ in warning the general population of the consequences of failing to comply with ‘normal’ responsibilities. However, when the maintenance of economic competitiveness required a reduction in welfare dependency, government aimed to further restrict access to the ‘sick’ and ‘impaired’ roles.
Sociologists have also addressed the way individual identity is formed through social interaction. Those taking this symbolic interactionalist approach maintained that the ‘sick role’ was ‘deviant’ in a society grounded in individual responsibility. Disability, therefore, was also regarded as a form of social deviance. However, negative attitudes towards disabled bodies in an aesthetic sense also play a part in the creation of such deviance. The best-known exponent of symbolic interactionalism was Goffman (1964), whose identification of stigma
