Learning Disability and Inclusion Phobia

Past, Present, Future

C. F. Goodey

• Publisher: Routledge
• Year: 2015
• ISBN:
  9781136772078
• Edition: 1
• Topic: Medicine
• Subtopic: Health Care Delivery

The social position of learning disabled people has shifted rapidly over the last 20 years, from long-stay institutions, first into community homes and day centres, and now to a currently emerging goal of "ordinary lives" for individuals using person-centred support and personal budgets. These approaches promise to replace a century and a half of "scientific" pathological models based on expert assessment, and of the accompanying segregated social administration which determined how and where people led their lives, and who they were.

This innovative volume explains how concepts of learning disability, intellectual disability and autism first came about, describes their more recent evolution in the formal disciplines of psychology, and shows the direct relevance of this historical knowledge to present and future policy, practice and research. Goodey argues that learning disability is not a historically stable category and different people are considered "learning disabled" as it changes over time. Using psychological and anthropological theory, he identifies the deeper lying pathology as "inclusion phobia", in which the tendency of human societies to establish an in-group and to assign out-groups reaches an extreme point. Thus the disability we call "intellectual" is a concept essential only to an era in which to be human is essentially to be deemed intelligent, autonomous and capable of rational choice.

Interweaving the author's historical scholarship with his practice-based experience in the field, Learning Disability and Inclusion Phobia challenges myths about the past as well as about present-day concepts, exposing both the historical continuities and the radical discontinuities in thinking about learning disability.

1   Introduction

What is learning disability? Any textbook will tell you. What is its place in the broader picture human beings have of each other? That is another question, and answers are needed. Doctors, psychologists, teachers, social workers, advocates, researchers, students, and last but first the people who currently carry the label, their families and friends: all of us need that bigger picture, and the longer view. We can understand practice, policy and research only in the context of time and place. Knowing where we all stand in that picture, where the idea of learning disability came from and where it may be going, is crucial to improving the lives of all of us. Without such an understanding, we operate in the dark.

Yet learning disability, as a concept, is usually spoken about as if what it is and what causes it can be taken for granted. Consider mental illness, by way of contrast. Currently its experts are in one of their periodic upheavals about what causes anomalies in the way people think and behave, and how to classify them. Genetic explanations, which have prevailed for a generation or more, are being challenged by a new wave of researchers who are once again doubting whether disorders such as neurosis, paranoia or bi-polar are something that is ‘wrong’ with people in a medical sense, rather than the result of what has happened to them over the course of their lives in society. Even so, those same experts would not dream of extending such doubts to Down’s syndrome, Fragile X, autism or any such label, which seem without question to be innate and largely unalterable identities. But could these conditions, too, be just something that has happened to people over the course of their lives?

The answer is obviously No – as long as we just squint at the question through the tiny chink of our present moment in history. On the one hand, although the environment in its broad sense (from epigenetic factors at the early cellular stage through to life chances and education) may play some part in how people turn out, and can alter their basic abilities for better or worse just as it can for the rest of us, present forms of social organization seriously complicate life for some. On the other hand, although learning disability seems pre-set in individuals rather than something that just happens to them along the way, this does not exclude the possibility that it is something that has happened along the way to human cultures. Indeed, an exploration of the past confirms this. Go back far enough and there were no such people, as we shall see later – at least, not in the historical record. So how do we know ‘they’ were there at all?

If this book deconstructs the concept of learning disability, that is only one of its aims, and a secondary one at that. Just being sceptical and leaving things at that is no good to anyone. Its chief aim, with the demolition work done, is to reconstruct the concept as something else entirely, and to draw some consequences from this for the future in terms of policy and of people’s lives. The past is relevant because reconstruction is the historian’s core task, and because working with written archives can sometimes be as exact a science as working in a genetics lab. The book proposes that learning disability, as we see it today, is root and branch the product of a more general social phobia; and it proposes that this phobia, rather than learning disability as such, should be the object of our anxiety and the primary target of social and political action.

To define learning disability, we must first realize that under its various names it has been an idea on the move, with a starting point at a certain historical conjuncture and perhaps a future finishing point too. And even more than that, it is a shape-shifter. Definitions are transitory, and the people thus defined do not constitute some fixed and separate subspecies of humanity. Let two or three generations pass, and the individuals thus classified, along with their typical characteristics, will have changed. The underlying category, under whatever label (there have been literally dozens), is not cross-historical, and its modern version gradually disappears the further back we investigate. Not only is it a category on the move, it is just one in a broader pattern of other, equally shifting ways of people putting each other into boxes that may at first sight bear no relation to learning disability. The one thing they do have in common is that they are status categories. Learning disability is a passing phase in the broader history of how human beings represent themselves to themselves, and to their fellows – a history that undergoes constant and almost total transformation in the long term.

History helps us to isolate learning disability and intelligence and hold them up for more thorough inspection. It enables us to compare and contrast. I cannot promise the reader a cosy chronological ride from the caveman to the computer. The category and the people it describes are not hard facts of nature; they are current but temporary manifestations of a more resilient and long-term pathological condition observable at times across history in the extreme urge to exclude. Each chapter has some chronological sections, their purpose being to describe the changes in character of the population subjected to the phobia; but they only make sense when set alongside that pathological urge, whose unchanging structural presence is visible at most points in past or present. My illustrations from history and from the present are therefore often interwoven.

This may induce whiplash, but that is preferable to the alternative. Describing things only in the order in which they happened leads us astray. It encourages fables: for example that everything is getting better and better (as many biologists or medical professionals might see it), or that everything is getting worse and worse (as many social theorists might). Since my aim is to make good the fragility of the concept of learning disability by reconstructing it as the outcome of a more fundamental and long-lasting social pathology, most of the chapters conclude with history rather than starting with it. The fragility of our basic concepts is laid bare first, before building work can be undertaken on sounder historical foundations. Today needs yesterday to prepare for tomorrow.

I have brought together the two strands of my own background, in qualitative research around policy and advocacy on the one hand and in the academic history of ideas on the other. The first of these will be familiar territory for many readers, unlike the second, which is under-researched and which I broached in detail in an earlier book.¹ (Readers interested in the primary sources behind my historical summaries here should refer to the original.) That book left two questions hanging. First, if learning disability is not a permanent fact of nature, is the urge to exclude? The present book goes some but not all of the way to answering that unanswerable question. The second question concerns how the history of ideas interacts with social history. The only way we can understand either is with the aid of the other. It was important in the first book to make good the lack of research into the conceptual frameworks of the distant past and to compare those ideas with our own. Nevertheless, ideas do not make history unless real people, dominated by material social forces, are making it with them; these feature in the present book.

As for the future, the one thing a historical approach does tell us is that if things were so completely different in the past, they can be different again in the future. Even my own experience, that of a single lifetime, spans segregated long-stay institutions, their closure, the development of personalized support, the slow but tangible subordination of professional assessment to person-centred planning, the government’s policy aim of ‘ordinary lives’ together with the backdoor reappearance of smaller-scale private institutions, and the introduction of and resistances to ordinary (mainstream) education. And even that one lifetime is no time at all in terms of the cultural changes we shall be looking at. Many of the people incarcerated in Western institutions even within the last century would not fit the learning disability category of today. Precursor categories such as the ‘feeble-minded’ contained unmarried mothers, their children, minor delinquents, misfits from chaotic families, waifs and strays, as well as some whom we would now label learning disabled.

And just as people who did, even then, fit our current category have emerged from their dungeons into daylight shared with everyone else, we are now creating a future in which there are new justifications for putting people away, by inventing categories, labels and institutions specifically for them. The autistic spectrum, non-existent two generations ago, and its associated system of special schools and private residential assessment and treatment centres, is an example. If the rapid turnover both in psychological categories and characteristics and in their corresponding social arrangements is visible to a living, still practising individual, how much more of a turnover can we expect from looking at the past or projecting into the future?

The point is to let this view of the link between past and future inform our thinking about the present. At various points in this book you may encounter some idea so bizarrely obsolete that you ask yourself, what has this got to do with me? Behind that thought is another, unexamined belief: that the only elements of the past that matter are the ones that look like the present. We have a huge investment in this assumption that present ideas are a modern improvement on primitive forebears. Why else work in the field? Nevertheless our present moment is ambiguous. On the one hand, there are oral historians like John Able, who tells us how he left his long-stay hospital for a place in the community,² or Mabel Cooper, who left the institution where for a quarter of a century she had slept in a locked sixty-bed dormitory with first-come-first-served clothes and toothbrushes to live an ordinary life in her own flat, shopping on her own, enjoying the company of children for the first time, and obtaining an honorary degree from the Open University.³ Barb Goode, from a similar starting-point, wound up at the United Nations, delivering a speech on self-advocacy.⁴ Yet while thousands of people like these have been liberated and found public attitudes more accepting than when they were first put away, we continue to hone the pre-natal diagnostic techniques whose aim is to prevent lives before they even begin.

The obvious question then arises: John, Mabel, Barb, do we want you around or don’t we? However, this book does not engage in ethical debate. The questions start further back. Who and what is it we are actually talking about? Arguing about values will not get us far if we do not answer this question first. It is usually bypassed, not only by teachers and social workers whose knowledge of people with learning difficulties comes from direct involvement in their lives, but equally by doctors and psychologists, i.e. by those from whom we might expect the sort of knowledge that is precise, scientific, stable, and value-free. Consequently, at present, the person just is the label or category – no questions asked.

Plenty of critical questions about the general concept of disability, usually omitting learning disability, have been raised over the past generation. Readers familiar with this work will be familiar with some of the questions I raise here too, though I am not particularly concerned with theory of the linguistic variety (Foucault, Deleuze, etc.) that dominates such discussions. Doubts have been raised as to whether theory of this kind, particularly when applied to learning disability as distinct from mental illness, is actually Foucauldian at all.⁵ Certainly its focus on language and its wariness of political action tend to inject a strong dose of pessimism about what can be achieved; and as someone whose motivation springs from close encounters with the professional opposition to person-centred service planning and desegregated schooling, I doubt whether discouragement is something I ever needed more of. Keen-eyed readers will no doubt detect a number of theoretical influences behind what I have written.

Chapter 2 states my starting hypothesis and does in fact discuss various ideas from psychiatry, anthropology and social psychology that might help to frame the rest of the discussion, while taking their limitations into account. Chapter 3 looks at the present fragility and past relativity of the concept of intelligence without which that of intellectual or learning disability could not exist. Chapter 4 examines the place of learning disability within the wider concept of difference, and the steps by which it came to occupy such a central position there. Chapter 5 discusses the role of biology and its relationship to the eugenic impulse in the modern construction of learning disability, noting how precarious is the very notion of a ‘cause’. Chapter 6 identifies cognitive development as a characteristically modern notion which the concept of learning disability reinforces and vice-versa, and probes its religious as well as socio-economic roots. Chapter 7 places assessment and measurement in the wider context of general forms of discrimination, and traces the historical path by which these cross-historical forms became embedded within the very concept of learning disability. Chapter 8 analyses the very recent arrival of autism, contrasts it sharply with previous usages of the term, and investigates its future prospects as a replacement paradigm for learning disability. Chapter 9 lays out the wider framework of social anxieties and moral panics, historical and current, from which autism has emerged. Chapter 10 sets out the prospects for future work.

The more sharply defined our concept of learning disability, the more inevitable the segregating practices that go with it. Both concept and practice, from their Western origins, have taken over much of the rest of the world. Alongside Canada, the UK now has probably the most emancipatory adult policy directives around, which in pockets are being translated into practice. Yet the resistance runs deeper than can be imagined, and the examples I provide of that excluding urge from the UK show how prevalent its highly disturbing symptoms are here too. They must be all the clearer to readers in places where closed and segregated institutions are still the unquestioned norm. The urge to exclude on grounds of intelligence thrives in the modern world. Yet the practical case has been made and proven for including people in the same kinds of educational, employment and friendship groups as everyone else, demonstrating in practical detail how it can be and is (occasionally) done, without leaving anyone in the lurch.⁶ We can close down all special schools, public segregated institutions and private care homes overnight, with the people in them becoming part of ordinary life. The problem is not doing it, but wanting it. This book says why.

Notes

1   C. Goodey (2011). A History of Intelligence and ‘Intellectual Disability’: The Shaping of Psychology in Early Modern Europe. Farnham: Ashgate.

2   J. Able (2008). Cold Stone Floors and Carbolic Soap. www.richmond.gov.uk/our_times_newsletter_march_09.pdf; and www.richmond.gov.uk/our_times_autumn_2008.pdf. Retrieved 14 April 2014.

3   M. Cooper (2012). I’d Like to Know Why. Ashill: Clover Press.

4   B. Goode (2011). The Goode Life: Memoirs of Disability Rights Activist Barb Goode. Vancouver: Spectrum.

5   M. Simpson (2013). Modernity and the Appearance of Idiocy: Intellectual Disability as a Regime of Truth. Lampeter: Mellen.

6   See for example J. O’Brien and C. Lyle O’Brien (2006). Implementing Person Centred Planning: Voices of Experience. Toronto: Inclusion Press; S. Taylor et al. (1987). The Nonrestrictive Environment: On Community Integration of Persons with the Most Severe Disabilities. Syracuse, NY: Human Policy Press. M. Falvey et al. (1997). All My Life’s a Circle. Using the Tools: Circles, Maps and Paths. Toronto: Inclusion Press; L. Jordan and C. Goodey (1996). Human Rights and School Change. Bristol: CSIE.

2 Exclusion

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