An Auto/Biographical Approach to Learning Disability Research

Dorothy Atkinson

• Publisher: Taylor & Francis
• Year: 2018
• Print ISBN: 9781138320567
• eBook ISBN: 9780429841996
• Edition: 1
• Topic: Social Sciences
• Subtopic: Sociology
• Index: Social Sciences

First published in 1997, Dorothy Atkinson collects testimonies of the personal perspectives of people with learning disability in order to rediscover the histories of people with learning disabilities. Calling on the importance if auto/biographical research as mode to encourage social, historical awareness and potential understanding of the commonalities as well the differences between people with learning difficulties.

1 Introduction

The silence of centuries

Many things have been claimed on behalf of people with learning disabilities. One claim is that their voices have been ‘lost’ not just across the years of this century, but throughout all time. There is a sense in which theirs are the ‘ultimate lost voices’ in terms of autobiographical records (Atkinson and Walmsley, 1995). With little or no recourse to the written word, their voices were seldom if ever heard. Certainly there is, and has been, silence on the part of people with learning disabilities, a silence throughout the centuries.

The silence is pervasive. One consequence is that much lived history, in the form of the personal experiences of people with learning disabilities, has gone unrecorded. There are few individual accounts of people’s lives, and hardly any sense of a shared perspective on history. The history (or histories) of people with learning disabilities, from their point of view, remains largely unwritten. In that sense it is a hidden history. It is hidden not only from the people most centrally concerned but hidden from all of us.

The silence has been filled, of course, by other more influential and powerful voices. As Joanna Ryan observed, ‘What history they do have is not so much theirs as the history of others acting on their behalf or against them’ (1980, p. 85). Thus there is a history of sorts; a partial account, based on documented evidence. This is a history of landmarks, key events, Acts of Parliament, and the deeds of great men (and, in this case, of women). These accounts do not include the views of people whose lives were touched, changed or even shaped by the events and actions which feature in these formal accounts. These accounts are not, of course, accessible to people with learning disabilities. The formal history of learning disability, just as much as the lived histories of real people, remains hidden from those most centrally concerned.

This book looks at ways and means of recovering (or finding) at least some of those lost voices, and beginning to chart aspects of that hidden history. In so doing, it is hoped that people who are still largely ‘invisible’ in their local communities (Bornat, 1992) will become visible and known. This is where what I am calling auto/biographical research comes in. This is a convenient umbrella term which includes both biographical research, which seeks to draw out and compile individual biographies or life stories, and oral history, which involves individuals and groups in recounting their lives within an historical context.

Auto/biographical research can have an impact at both a personal and a social level. At a personal level, it provides the opportunity for people with learning disabilities to look at, and make sense of, their own lives. In enabling people to compile their autobiographies it involves them in the process of life review.

At a social level, the collecting of auto/biographical accounts can bring out the commonalities as well as the differences in people’s experiences – commonalities with other people with learning disabilities, as well as with the rest of society. This has the potential to encourage social and historical awareness, and understanding, of shared experiences, and their sources, for people with learning disabilities. And, just as importantly, auto/biographical research provides a means by which the understanding of others can be enriched – so we can begin to know what it means, and what it has meant, to be seen as a person with a learning disability in this society.

Revealing hidden history – or histories

People with learning disabilities have been silent, or perhaps it is more accurate to say silenced, for much of the century. They do speak now and, to an ever increasing degree, they are heard. But this is a late twentieth century phenomenon. They were until recently silent and, in their silence, other people spoke about them and spoke for – or against – them.

In the early years of this century people with learning disabilities were seen as a threat to society. This meant they were segregated from everyone else and were literally out of earshot. They were effectively silenced. As ‘deficit’ theories came into vogue, first in medicine and psychology, but later in education, then people were seen as cases to be treated (or specially trained). The voices of people themselves were replaced by their case histories, prepared by others on their behalf. As social theories came into fashion from the 1960s and 70s onwards, people with learning disabilities were represented not as the perpetrators of social ills but more the victims of social oppression. Now at the end of the century their own voices are increasingly being heard. Neither ‘villains’ nor ‘victims’, in their own accounts they are individuals with a personal history, a culture, a class, a gender, as well as an impairment (Atkinson and Williams, 1990, p. 8).

The silence, then, was never total. Voices have been heard throughout the century, but mostly these were not the voices of people with learning disabilities. Whose voices were they? And what were they saying? I will look, in turn, at the voices heard most clearly in the four key phases in the history of learning disability in this century: the phases of segregation, experts, normalization and self-advocacy.

1 Silence through segregation

At the turn of the century, and until the 1930s, many of the voices were those of the eugenicists, and those sympathetic to their cause. A link had been made, or at least claimed, between ‘mental deficiency’ (as it was then known) and all kinds of social problems. In 1896, the National Association for the Care and Control of the Feeble-Minded was set up, a pressure group which campaigned for the lifelong segregation of ‘mental defectives’ (the terminology of the time). Its aim was to prevent sexuality, and thus the reproduction of mental defectives – echoing, according to Joanna Ryan, wider middle class fears at the time regarding working class fertility (1980, p. 107).

Underlying the campaign was the belief that mental defectives were not only the cause of most social evils but were also an economic burden (Fido and Potts 1989). The National Association and the Eugenics Society joined forces in 1910 in order to campaign for mental deficiency legislation. Jointly the two organizations issued a pamphlet pressing for urgent action:

[…] BECAUSE in consequence of the neglect to recognize and treat their condition, the mentally defective become criminals and are sent to prison; they become drunkards and fill the reformatories; they become paupers, and pass into the workhouses.

BECAUSE they are frequently producing children, many of whom inherit their mental defect, and nearly all of whom become the paupers, criminals and unemployables of the next generation.

Fiona Williams (1993) sees this view of learning disability as a first attempt to place it within a wider social context. This analysis saw mental defectives essentially as the villains of the piece. The present bid to place learning disability within a wider social context has changed the emphasis – in current thinking the erstwhile villains have become the victims of oppression. But we shall come to this view later.

The ideas of the eugenics movement were influential at the turn of the century. These ideas dominated how people with learning disabilities were seen both as a social group and as individuals representative of that social group. Mental deficiency in this context was seen as a social problem associated with race degeneration and threatened deterioration of the national stock.

The 1913 Mental Deficiency Act established the basis of a separate and unified service which was intended to exclude mentally deficient people from other welfare and social agencies, and to bar them from the general educational system. This was the beginning of the policies of exclusion which have operated, one way and another, for much of this century. An energetic nationwide crusade for most, if not all, mental defectives to be institutionalized for life – ‘for their protection and the protection of others’ – had been influential in the passing of the Act. As a result, the Act required local authorities to certify all mental defectives and set up special certified institutions. The drive to institutionalization was based, according to Fido and Potts (1989), on the overriding fear that the feeble-minded would ‘repeat their type’, resulting in the ‘propagation of a degenerate stock’. There was a particular concern about young feeble-minded women, as they were presumed to be more immoral and fertile than other women (Digby, 1996; Atkinson and Walmsley, 1995).

This concern found expression in the 1913 Act, which created a whole new category of ‘unfit’ mothers – ‘feeble-minded women’. This was a socially constructed category, which led to the wholesale identification and categorization of women said to be feeble-minded. The classification feebleminded was equated with assumed immorality, fecundity, promiscuity and disease (Williams, 1993). The 1913 Act was a means of controlling the sexual threat seen to be posed by these women, not least because they could be targeted for institutional segregation (Digby, 1996; Thomson, 1992; Atkinson and Walmsley, 1995). The incarceration of thousands of women on this basis had a lasting and profound effect on the women concerned, and their families. Some of their life stories, which include their experiences of identification and incarceration, have subsequently been recorded and published (Potts and Fido, 1991).

The first step to detainment and institutionalization was certification, involving the assessment of people according to three levels of defect: ‘idiot’, ‘imbecile’ and ‘feeble-minded’, together with a catch-all category of ‘moral defective’. This latter category was used to detain many people, often adolescents, on account of minor offences, like petty thefts, or having an illegitimate baby.

This era generated its own set of stories. At the time, biographical accounts were used as part of the campaign preceding the Act for lifelong institutionalization. Now different sorts of life stories are emanating from this era. Some of those people who were certified, and institutionalized, under the terms of the Act are now contributing their autobiographical accounts of their admission and subsequent incarceration in long-stay institutions. The two sets of stories have little in common.

2 Experts speak

In the period 1930s–1980s the medical approach dominated the learning disability field. It did so to such an extent that Joanna Ryan suggests it provides a case study of the ‘medicalization of a social problem’ and is ‘indicative of the way our society deals with people it finds useless, dangerous or inconvenient’ (Ryan, 1980, p. 15). People come to be labelled as ‘different’ for all sorts of reasons. One explanation which has been dominant for much of this century is that people with learning disabilities are, on certain objective and measurable criteria, ‘deficient’ in cognitive and social skills (and, at times, seen as lesser beings in moral terms). The deficit model of learning disability has justified the kind of ‘treatment’ that people with learning disabilities have received throughout much of this century. It also helped fuel the rise and dominance of the ‘expert’.

There have been many experts in learning disability in this century. Doctors, especially psychiatrists, psychologists and educationalists have all identified deficits in the people who came their way. These deficits could be treated and ameliorated by various specialist programmes such as drugs regimes, behaviour programmes, skills training and special needs teaching. The dominant voice in the treatment era was the voice of the expert. The voices of people with learning disabilities, if heard at all, were submerged into the case histories written about them. People’s lives became ‘biographical fragments’ in the accounts of others (Walmsley, 1996).

This process reflects what Joanna Ryan has called ‘medical model’ thinking. This typically takes a narrow view of the people it is dealing with, seeing them in terms of what is wrong or abnormal about them, and focusing on the nature of ‘the defect’ (Ryan, 1980, p. 26). This view, however, is held without due regard for environmental factors, or the social context in which people were living. The view, and the explanation, were couched in terms of the shortcomings or problems of the person with learning disability. Treatment was on the basis of how to make good those shortcomings, or how to change or suppress the person’s ‘behaviour problems’. At the turn of the century, doctors came to see themselves as experts in mental deficiency, writing papers and books on, for example, feeble-mindedness as a physical condition (Digby, 1996; Jackson, 1996).

Medicine sanctioned the long-stay hospitals as places in which to treat people whom society had rejected. Patients were seen in pathological terms; admission and ‘care’ were deemed necessary on the basis of what was diagnosed as wrong with them. This process had both personal and social consequences. At a personal level, this approach masked or denied other aspects of people’s existence. At a social level, it continued and expanded the policy of exclusion of people with learning disabilities for much of this century.

There were flaws in the defect theories themselves. In stressing the pathological explanation of learning disability, the defect theories led to a medical approach which assessed and measured the differences between people with learning disabilities and ‘normal’ people. They focused on, for example, their slow reaction time, their inconsistent learning strategies, and their inadequate short-term memories (Ryan, 1980, p. 27). The defect theories emphasized how people were different and inferior; they did not look for commonalities between people (a point made by Bogdan and Taylor, 1982). Implicit in the terminology of mental deficiency was the notion of the mental defective as ‘the Other’ (Digby, 1996). And the scientific discourse of the time held that mental defectives were genetically different from the rest of ‘us’ (Barker, 1989).

This focus on difference had a dual effect. Not only did it deny any possibility that people with learning disabilities might have a valid perception of their own situation – and be able to articulate it – but it also served to protect the rest of us from having to confront their pain and act on it. Writing in 1980, before the current interest in oral history and auto/biographical research, Joanna Ryan suggested the need ‘to try and capture their experience of the world’ – only then, she concluded, would we reach those ‘points of identification [those] needs they share with others’ (1980, p. 27).

Medical domination began to give way to other forces and influences, particularly in the 1970s. Educational ideas about ‘special needs’ became important, especially in the wake of the 1971 Education Act which declared all children educable. A host of ideas followed on, although much educational provision was in segregated special schools. Educational ideas were introduced into an adult context too, with reports supporting Social and Educational Centres to replace the traditional Adult Training Centres. Education was, of course, a socially acceptable form of intervention – although many people now challenge the separatist nature of much of the provision.

Psychologists have also been influential in assessing and training people, to make up for their deficits or to improve their behaviour. As in medicine and education, psychology drew on classification techniques, measurement, aetiology and the treatment of ‘cases’ (Williams, 1993). The development of skills or the suppression of anti-social behaviour were their main targets.

The period of the experts was dominated by medicine, ‘special needs’ and psychology. The documentation of case histories, or case studies, according to Fiona Williams (1993) became all important. One source of stories is thus the medical (or educational or psychological) case history, the biographical account written by the professional at the time. Set against the medical case history are other sets of stories which have emerged only in recent years. The oral history accounts collected and compiled by Potts and Fido (1991) provide a rare and rich insight into daily life and deprivation in a colony in the north of England. And it is my hope that this book will provide another source of auto/biographical accounts to set alongside and against the case histories of the experts.

3 The ‘villain’ becomes the ‘victim’

The shift in perspective whereby the ‘villain’ of the early twentieth century came to be seen, in the later years of the century, as its ‘victim’, can be traced back to a set of sociological theories which came into prominence in the 1960s. These were the theories which sought to explain deviance, stigma and devaluation, and they were used to shed new light on how people with learning disabilities had been treated for much of this century.

The learning disability ‘problem’ was re-cast as being not so much in the person as in the social processes which placed that person in a ‘defective’ role in society. Thus learning disability came to be seen by some people as socially constructed. The focus, in this school of thought, switched from the diagnosed personal deficits to the very process which had categorized and labelled the person as ‘deficient’ in the first place. Labelling was seen to have its own consequences, not least that a label such as ‘mental defective’ could all too readily become all-encompassing. It becomes (or threatens to become) the identity of the person concerned. Other personal and social consequences were said to follow the labelling process. At a personal level, there was a stigma attached (Goffman, 1963; Khan, 1985), and at least the possibility of humiliation, segregation and discrimination (Khan, 1985, p. 60).

The label, whatever it was (and labels change over the years: ‘mental defective’, ‘subnormal’, ‘mentally handicapped’), carried with it a set of assumptions about the person concerned, based on stereotypical thinking about people with learning disabilities as a social group. On this basis, not only were people seen to be of low intelligence, but additional imperfections were attributed to them, such as incompetence, irrationality, unpredictability and dangerousness. In particular, people with learning disabilities were seen as unable to express their thoughts and ideas, and unable to analyse their lives and current situations (Bogdan and Taylor, 1982). Their silence was assured. Clearly they had nothing of value to say. This view has, of course, been challenged subsequently but it was a partial yet pervasive view of people with learning disabilities which held sway for many years.

A useful contribution to this debate was Wolfensberger’s identification of eight social ro...

Table of contents

• Cover
• Dedication Page
• Title Page
• Copyright Page
• Table of Contents
• Acknowledgements
• 1 Introduction
• 2 Research issues
• 3 The research
• 4 The process of life review
• 5 Compiling a collective account
• 6 Narratives of ordinary lives
• 7 Stories of segregated lives
• 8 An historical account
• 9 Meanings and messages
• 10 Reflections on practice
• Bibliography
• Index