Giving Voice to Profound Disability

Dignity, dependence and human capabilities

John Vorhaus

• Publisher: Routledge
• Year: 2015
• Print ISBN: 9780415731638
• eBook ISBN: 9781317437314
• Topic: Education
• Subtopic: Education General

Giving Voice to Profound Disability is devoted to exploring the lives of people with profound and multiple learning difficulties and disabilities, and brings together the voices of those best placed to speak about the rewards and challenges of living with, supporting and teaching this group of vulnerable and dependent people – including parents, carers and teachers. Along with their personal insights the book offers philosophical reflections on the status, role and treatment of profoundly disabled people, and the subjects discussed include:

• Respect and human dignity
• Dependency
• Freedom and human capabilities
• Rights, equality and citizenship
• Valuing people
• Caring for others

The experience and reflections presented in this book illustrate the progress and achievements in supporting and teaching people with profound disabilities, but they also reveal the challenges involved in enabling them to develop their full potential. It is suggested, also, that these challenges apply not only to this group, but also to people who, through sickness, accident and old age, face equivalent levels of dependency and disability.

Giving Voice to Profound Disability will be of interest to all those involved in the lives of severely and profoundly disabled people, including parents, carers, teachers, nurses, therapists, academics, researchers, students and policymakers.

1 INTRODUCTION

DOI: 10.4324/9781315693712-1

This is a book about people with profound and multiple learning difficulties and disabilities (PMLD) – people who, in the main, cannot write or speak much for themselves – and those who are best able to speak up on their behalf – their parents, carers and teachers. Books on disability would fill many libraries; books on profound and multiple disabilities a few shelves; and books devoted to exploring the lives of profoundly disabled people, and the experience of those who care for and work with them, rather less than that. It is the last of these that this book is given over to.

It is not so long ago that any such exercise would have been regarded as eccentric. Times are changing: in recent years we have witnessed the growth of disability rights movements, the emergence of disability studies as a multi-disciplinary activity in its own right, and such legislative landmarks as the 1995 UK Disability Discrimination Act (DDA), as amended by the Special Educational Needs and Disability Act 2001, and the Americans with Disabilities Act Amendments Act 2008. Notable recent policy initiatives in England include Healthcare for All (2008), an inquiry into access to healthcare for people with learning disabilities, and the Children and Families Act (2014), which includes legislation to support children and families with special educational needs. A significant review, more closely focused on the people discussed here, is the Salt Review (2010) into the supply of teachers for pupils with severe, profound and multiple learning difficulties. I will be returning to this review in due course.

In writing this book, I had two principal aims: to provide some insight into the lives of people with profound learning difficulties and disabilities, and of those who are closest to them, and to offer introductory thoughts on some of the broad philosophical issues that arise from reflection on profound disability. I say ‘philosophical’ issues, and they are that, but they also number among the basic questions and conundrums that any person who lives and works with profound disability will come up against at one time or another: questions about love and care, dignity and respect, dependence and independence, human capabilities and the value of human beings.

I am not aware of other work having aims that precisely match these; but I have learned much from writers who have sought to include the experiences of people with profound and other cognitive disabilities in their own theoretical research on disability (Disability and Society 1999; Knox et al. 2000; Chappell 2000; Brett 2002).

Giving voice to profound disability

It is easy to state these aims, more difficult to do justice to them. Though I have sought to ‘give voice to profound disability’, it has not been possible to include the voices of profoundly disabled people themselves. It is certainly possible to communicate with people with profound disabilities, and to elicit their thoughts on many matters that affect them, including their needs, wants and preferences. It is a challenge of a different order, however, when what is wanted is reflection on one's status, value and capabilities. There is a pressing question, one which developments in technology and pedagogy should assist with, as to what more can be done to utilise and develop forms of augmentative and alternative communication,¹ so as to enable profoundly disabled people to communicate, and, among other things, to contribute to a research exercise of this kind. The absence of testimony from profoundly disabled people is, it must be said, a conspicuous omission; nevertheless, I have sought to give ample space to those who are closest to people with PMLD, and, as far as possible, I have allowed the people I interviewed to speak for themselves, both when describing their own experience and when offering thoughts on the questions this book is designed to look into.

This is not a work of social science. It would even be misleading to say that the experiences presented here are drawn from a ‘sample’ of carers and professionals, since the group of people I interviewed was not identified in accordance with sampling methodology. The process of finding respondents was largely opportunistic; most interviewees live and work in south-east England, which is also where the five schools I have spent time in are located. The testimony is collected from interviews undertaken over five years with 102 people who parent, live with, care for, teach or otherwise work closely with people with profound disabilities: parents, grandparents, (extended) family members, support workers, head teachers, teachers, learning support assistants and interpreters, along with miscellaneous others, including neurologists, musicologists, theatre directors and religious leaders. Particularly with respect to carers and teachers, I sought out voices representing numerous ethnicities, and people of varying ages and socioeconomic backgrounds. Most interviewees are women, in keeping with the profile of primary carers and teachers of people with profound disabilities. And most of the profoundly disabled people discussed here are either children or young people, aged between 3 and 25 years.² The interviews tended to last between 1 and 2 hours: they had a common structure but they also allowed respondents to explore any of those aspects of living with profound disability that were of greatest interest or were otherwise pre-occupying.

I encouraged respondents to speak at length, and candidly, about their experience. But, owing to personality, or culture, or both, not everyone is able or willing to disclose their innermost thoughts, some of which may be painful or embarrassing, or relate to something which it would be easier not to face head on. In any case, it is a big ‘ask’ to invite someone to talk openly about their love for or their life with a person with profound disabilities. Profound disabilities present daunting challenges: some people were understandably reluctant to disclose what they might consider as intimate details of their private lives, or to discuss some of the feelings that go along with a demanding relationship – anger, for example, or envy of others’ good fortune. One respondent, Cheryl Arvidson-Keating, an eloquent and outspoken mother of a profoundly disabled girl, is well aware of the sensitivities and complications. Shortly after our interview she posted the following thoughts on a blog:

My experience … is that there is an Inner and an Outer world. The ‘Inner World’ [includes] people who understand how you are living … people with similar lives that you meet at the hospice or the disabled parent support group; in the Consultant's waiting room or at the Wheelchair Skills Training Course … You may also have a few close friends that are also in your ‘inner world’, who you can vent to, who get it. Your child's professionals may or may not get it, it depends on their experience, their empathy and how closely you work with them.

And then, there is everyone else. They are in the ‘Outer World’. They are the people who you keep a smile in your pocket for. When they ask how you are doing, you don't tell them that you were awake four times turning N in the night and then spent twenty minutes scrubbing feed off the carpet and had to bath and change her before you went out because she tried to help you hold the bolus and her co-ordination was so poor this morning that it went everywhere, so you were late taking L to school again and she was unsettled and didn't want to go and you were late getting back to pick N up to take her to her short-notice Orthotics appointment you got because her splints are so painful that she can't walk in them – and therefore at all – and so you didn't have time to park at the hospital and you fumbled getting N from the car seat to the wheelchair and ricked your back and she was grumpy and wouldn't let the Orthoticist look at her feet without you holding her whilst she screamed and … so on.

You just get the smile out, paste it on and say ‘Oh, we're fine! How about you?’ Because you know that if you do start talking, you'll start crying with exhaustion; and they aren't close enough to you to have to deal with that.

I have to trust you a very great deal to let you in to my inner world in real life. So I say, to you ‘Outer World’ people … parent-carers of disabled children do talk about … grief … anger and desperation. We just don't talk about it with you. And it's not because we are deliberately excluding you – at least, that's not my reason. It's just that it's such a huge thing to explain that it's simpler to paste on the smile and talk about other stuff.

(Arvidson-Keating 2014)

Some parent-carers will experience less grief and anger than others; but anyone should be able to understand the principal point that Cheryl is expressing. I, being neither close friend nor confidant, represent the ‘Outer World’, with all that that implies for the ability and preparedness of respondents to open up to me.

Regardless of candour or inhibition, it should be no surprise if parental reflections turn out to be partial, or sanguine, or based more on hope than expectation. The perspective of a neuro-disability specialist is helpful here. Michelle is a consultant paediatric neurologist who has worked with profoundly disabled children and their families for many years. She is the first to admit that in the process of arriving at judgements about treatment, including life-saving treatment, the knowledge and experience of patients and their families is indispensable; as it is for making judgements about someone's existing and anticipated quality of life, a judgement that will feature in any decision about whether to resuscitate a child, or to keep her alive. Michelle remarks that ‘intensivists’ – specialists providing care and treatment to patients in intensive care – may only gain first-hand knowledge of patients and their families in that one context. They cannot see for themselves how patients and families adjust to their lives and constraints over time. The intensivist may see grief and despair when the diagnosis is first disclosed, but not how strong and resilient people can be; how, one year later, two years later, the child who was struggling to live, and the parents who were struggling to keep themselves from falling apart, may all have adapted to the point that they are now well, and coping well, with their new lives.

On the other hand, Michelle can see that parents are not always the best judges of their children's prospects, or what their children are likely to be capable of. It is always her intention to learn as much from the parents and children as time allows, and she is the first to acknowledge that parents are often a good judge of their child's capabilities; but there are also examples of parents with inflated expectations of their child, or whose beliefs and expectations are at odds with testimony from other sources – reports from schools and physiotherapists for example. If a parent is saying one thing, whilst all the evidence is suggesting another, there is inevitably a question about the extent to which the parent has hold of the whole truth.

Of course it is the most natural thing in the world for a parent to hope against hope, or to believe that her child will walk unaided or communicate with words when all the evidence suggests that this will not be possible. And sometimes, against (almost) all expectation, a parent turns out to have been closer to the truth about her children than anyone else. At the very least, hopes and aspirations should be treated with care, even if they are destined to be disappointed. Whilst, therefore, it is necessary to consider whether a feeling or a hope has a basis in fact, it is also important to show sensitivity to what carers believe and yearn for, even if the facts remain obstinately set against them. In any case, it is sometimes hard to ascertain what the ‘facts’ are, or where the line between ‘fact’ and ‘aspiration’ lies exactly; moreover, believing that something is so, and willing it to be so – ‘my daughter will learn to walk, no matter what it takes!’ – can make it more likely that it becomes so one day. The pursuit of dreams and sheer determination can make a difference to how things turn out – to what is, after all, possible. This is taking us into the realm of philosophy.

Philosophical reflections

The second of the book's aims is to provide some philosophical reflection on the experiences described here. It is closely related to the first, since I intend to illustrate the importance of human testimony for philosophical thinking about disability, as provided by those closest to people with profound disabilities. Their experience has weight, both because it is their experience and because of the illumination it casts on some of the more abstract questions that philosophy deals with.

The discussions to follow are intended as an introduction to a few of the many philosophical questions raised by reflection on profound disability – about dignity, respect, care, dependency, human capabilities and the value of human beings. My intention is to introduce these subjects (no more than that), to show how they are related to each other, and how each is pertinent not only to the lives of profoundly disabled people but also to all of us at some stages in our lives. There are numerous other questions barely mentioned here – about personhood, identity, power, oppression, freedom and justice – which I could equally well have chosen to concentrate on, and about which philosophers of disability have written extensively (Kittay 1999; Francis and Silvers 2000; Carlson 2010).

The philosophical questions that are discussed go to the heart of what many of us value and care about. But it is not always easy to articulate and explain basic values, nor what they imply for how we should behave. Consider how we think about respecting people and their dignity: that we should show respect for people and not violate their human dignity are among our most basic precepts, and they are included in regulations specifying standards of conduct in educational and other institutional settings. However, whilst there is a consensus that these precepts should inform the ethos and pedagogy found in special schools, it is much less clear what their practical and theoretical implications are or should be. Ought we always to judge, to take a practical example, that we are failing to show respect for a pupil if we choose to talk over her head, if she cannot understand what we are saying, or even appreciate that we are indeed talking over her head? Or, to take a theoretical example, does respect for persons imply that a principal pedagogic goal is the promotion of pupil's autonomy, even as this applies to a child with a life-limiting condition who is in a lot of pain, and for whom any new routine will induce considerable distress?

I will seek to show how the experiences described here illuminate philosophical questions such as these. To do that it is necessary to have an eye to the philosopher's perennial concerns with truth and argument; to claim no more on behalf of someone's testimony than their testimony warrants; to notice any inconsistencies; and to be aware of any evidence that might either support or detract from the truth or plausibility of what has been said.

A great deal has been written about ‘truth’ and ‘interpretation’ in the context of disability, but I shall not offer much discussion here.³ I aim to show respect for truth and consistency, but I also seek to allow ample room for people's interpretations of experience; and not only their interpretations, but also their hopes and aspirations, for these too play a sustaining role in the lives of those who care for and teach profoundly disabled people.

The question, ‘Is it true that this child is and always will be profoundly disabled?’ misleadingly suggests a simple answer. It might be true that she is p...

Table of contents

• Cover Page
• Half-Title Page
• Title Page
• Copyright Page
• Dedication
• Table of Contents
• Acknowledgements
• 1 Introduction
• 2 Human capabilities: in practice
• 3 Human capabilities: in theory
• 4 Dependency and reciprocity
• 5 Valuing profoundly disabled people: in practice
• 6 Valuing profoundly disabled people: in theory
• 7 Respect and human dignity
• 8 Caring for profoundly disabled people: in practice
• 9 Caring for profoundly disabled people: reflection and theory
• 10 Looking ahead
• Further philosophical reading
• References
• Index