Ethical Dilemmas in Historical Research with People with Learning Difficulties

British Journal of Learning Disabilities Vol. 26 (1998) . 135

Ethical Dilemmas in Historical Research with People with

Learning Difficulties

S. Rolph, School of Health and Social Welfare, The Open University, Milton Keynes.

This paper discusses the ethics of historical research with people with learning difficulties, and in particular those issues which arise in both oral and archival history. Pioneers in the work of collecting the life stories of people with learning difficulties debated some of the issues around biographical and autobiographical methods (Bogdan & Taylor, 1982). The history of learning disability has, however, until comparatively recently been a neglected subject. The histories that have existed have been written predominantly from an official view- point, have not included the views of people with learning difficulties themselves, and have tended therefore to be partial accounts (Kanner, 1964). A new development of the 1980s and 9Os, however, has been the grow- ing interest by people with learning difficulties in reclaiming their histories (Cooper, 1997; Barron, 1996; Lewis, 1997). Historians who have been supporting them have suddenly been faced with new ethical dilemmas which are only just beginning to be discussed in the literature (Potts & Fido, 1991; Atkinson et al., 1997; Rolph, 1998). In the following sections, I will highlight some of the issues which occur in this new historical research, and which particularly concerned me in my own research. I then discuss the methods adopted in an attempt to solve them.

Ethical Issues It is easy to claim that all ethical issues can be solved if

the philosophy of the researcher and the philosophy on which the research is based is clear at the start. There are major limitations in allowing researchers to rely solely on their own values in determining how ethical dilemmas should be solved, because ’ethical values are related to both professional background and gender’, and also because individual values ‘may be no more than a reflec- tion of self-interest’ (Gallagher et al., 1995). If personal philosophy is not enough, we might then turn to the guidance of other bodies such as medical or university ethics committees (Higgs & Melling, 1997). There is often, however, a range of concerns which arises during fieldwork which are beyond the remit of such committees. Ristock & Pennell (1996) warn that permission from an ethics committee to proceed with the research is just the

beginning of a process of constant self-monitoring by the researcher, and John Swain et al . (1998) in a recent article concerning research in the field of learning difficulties, also highlight the limitations of the decisions of ethics committees. The article states that approaches to ethics committees ’fulfil the researcher’s obligations in principle while leaving the practice of fieldwork open to manipulation and the pursuit of the researcher’s vested interests . . . there is a danger that researchers see their responsibilities as fulfilled within an a priori approach’ (Swain et aI., 1998).

My research explores aspects of the history of community care for people with learning difficulties in Norfolk from 1930 to 1980. It is based on the life histories of ten people with learning difficulties who have experienced community care, as well as the oral evidence of some of the staff who have been involved professionally, and employers and friends who had a role in community care during this period. As there is a rich archive in Norwich relating to the activities of the Committee set up under the 1913 Mental Deficiency Act, I have also used archive material to examine official attitudes, and the way policies were implemented locally. In the initial stages of setting up the research, and as it has proceeded, the ethical issues of anonymity and confidentiality on the one hand, and ownership of the research on the other, have challenged both the archival and oral history research methods. These issues are well-known and much written about in oral history literature (Yow, 1994), but raise particular concerns in research in the field of learning difficulties (Fido & Potts, 1989; Walmsley, 1995). Two reasons are put forward for the need for anonymity. One is the perceived vulnerability of people with learning difficulties. In describing their history of a hospital, Fido and Potts say that ’with some very personal and possibly controversial material, we felt it important to protect the confidentiality and anonymity of the interviewees’ (Fido & Potts, 1989: 34). The second is the shame and stigma attached to having a learning disability, which has caused some families to deny or hide the fact as far as they can. As late as 1959, the Medical Superintendent of the Hos- pital for people with learning difficulties in Norfolk was making allowances for embarrassment or shame. He wrote: ’. . . where the degree of mental defect is obtrusive and likely to be an embarrassment to patients or parents

136 . British Journal of Learning Disabilities Vol. 26 ( I 998)

attending child guidance clinics, the patients are diverted to the special mental deficiency diagnostic clinics’ (Morris & Alford, 1959). This stigma still exists as part of the dis- course which sets up debates concerning anonymity and privacy for both families and co-researchers. When felt by families, it has the potential to deny acknowledgement and ownership to people with learning difficulties as historians.

Ethics and oral history There are two aspects of the issue of anonymity: one is

the importance of enabling people with learning difficulties who want to, to speak about their own history and be acknowledged, in order to break the silence of centuries (Atkinson, 1997); the other is the right of individuals to make their own decisions about what parts of their lives they want to be made public, and to have control over their own privacy or anonymity.

A family’s wish for privacy has to be balanced with the position of adults with learning difficulties who may need and want to regain an identity and build a sense of their past (Atkinson, 1993). If people with learning difficulties wish to be acknowledged as co-researchers or research participants, and to claim authorship for their work, their names will appear in the public domain. Ethics Committees have an important role in preventing exploitation and abuse of those who have difficulty in understanding research projects. In my own research experience, some members of the Committee were also concerned not so much with the right of the participants to speak up and be heard, as with the right of their families to anonymity. Other public bodies such as Hospital Trusts also have concerns about historical revelations, and request a degree of anonymity, sometimes asking that the name of the hospital or Trust be disguised (Potts & Fido, 1991). Strict anonymity demanded by committees or hospitals without discussion with the individuals involved could be seen, however, as in effect condemn- ing participants to remain as hidden as they have been in the past. As recent public revelations concerning enforced sterilisation and dental experiments in Scandi- navia and Austria continuing as late as the 1970s have highlighted, it is vital that historians reveal the past, with no more secret places or ’forgotten lives’ (Freedland, 1997; Leidig, 1997). The dilemma has been described as ’the rights of the individual to privacy, set against the public right to know’ (Swain et al., 1998).

Historians can only reveal effectively and ethically through an alliance with the individuals with learning difficulties themselves, who, together with their advocates if needed, will be the arbiters of their own confidentiality and privacy issues. In my research, some participants have wanted to remain anonymous, and others have wanted to be named. They have been clear as to the parts of their life stories that they want to be placed in the public domain, and those that they have edited out of the final account on the grounds of privacy. They have also recognised the importance of telling their stories, as is clear from the following:

It has let people know what I’ve been through. Some people don’t understand . . . I know what I put in my story is true ... that’ll shock some people who read that ... That is important. I mean people think when

you’ve been in them sort of places they think we’re stupid, they think we know nothing, but we’re not! I’ve been pushed from pillar to post. But people don’t understand, do they? I think it will help other people, won’t it . .. people like J. who wants to come out (of the Hospital). You know who I’d really like to read my story? That’s my old social worker. That would help him, help him to get people out ... same as I did ... (Andrews, forthcoming)

The Norwich District Ethics Committee, while voicing concerns over the fact that I intended to enable people to be named if they so wished, nevertheless left it to me in the end to treat the matter sensitively. I have found that several of the interviewees have become so interested in the research, that they have involved their families, and updated them with news of the progress of the work, as well as giving them excerpts of the life stories to read. In this way the interviewees themselves have disseminated the research, and have had reactions from their families to the idea of life stories being published in articles or chapters. Where interviewees are more wary of family reactions, their anonymity is respected. However, as I discuss in the next section, in historical research, particularly where archives are studied, anonymity is not altogether a straightforward decision, and is not always easy to maintain or guarantee (Swain et al., 1998).

Ethics and archives The type of archive I describe and which I have used

in my research excludes hospital files and patient records. It is instead the huge and mostly untapped public archive describing the official version of the development of leam- ing disability services in early 20th century Norfolk. This rich archive, dating from 1913-1948, is deposited in the Norfolk Record Office, and contains many volumes detailing the local response to the Mental Deficiency Acts, the growth of community care, as well as the establish- ment of new hospitals and hostels. One feature of the archive is the use of the full names of people with leam- ing difficulties, and often their home circumstances, and various sources and amounts of income. In fact, the initial recording process was itself an intrusion into the privacy of those in society least able to be aware of or object to this very public discussion of their lives. The nature of the type of community care which was set up by the 1913 and 1927 Acts, with its policy of surveillance and control, meant that many details of an individual’s home and family relationships were open to inspection and were then written up in the records (Walmsley, 1997). John Swain (Swain et aZ., 1998), in his discussion of ethical issues surrounding research into abuse, says that ‘there are limits to which people’s lives should be open to public scrutiny’. In fact, the existence of detailed archives means that historically, this has already happened.

The detailed material available immediately presents an ethical dilemma for the historian who, as research procedures are organised at present, inevitably has power and control over the material, simply through knowledge of its existence and whereabouts. On the one hand, as a historian, my instincts are that the material needs to be available; on the other hand, I am concerned at the display of lives when people themselves are unaware of the display and on the whole have no say in its use.

British Journal of Learning Disabilities Voi. 26 (1 998) . 137

There is easy access to the material for historians and scholars which could make irrelevant any careful screen- ing of names and places, and any attempts at anonymity. When analysing the archive, I use pseudonyms to protect individuals’ privacy, but I need to give the reference when using it as source material, because, as Valerie Yow says, ’One of the necessities in reviewing a historian’s conclusions is that others will have access to the same documents. If the source is anonymous and identified only by a pseudonym, how can the veracity of a statement be judged?’ (Yow, 1994: 94). If, without naming a research participant, I name the institution, and the source of the archive, I risk starting a process whereby others could find out confidential details about people’s lives. If I do not name the location of my research, my claim to be writing a history is, as Yow indicates, undermined. The ethical issue is two-fold: to protect the privacy of people with learning difficulties; and yet to use this rich archive to correct the imbalance in social history and the neglect shown by social historians in the past. The challenge is to ensure that people with learning difficulties have access to sources, and ownership of their history. Some are now taking up this challenge themselves, and with support are finding and reading their records (Cooper et al., forthcoming; Ferris ef al., forthcoming).

The nature of the archives means that it is not, however, just a question of accessibility. A further ethical dilemma that arises when people begin to research their own records, centres on the uncovering of material that is painful not only because of the often offensive language and terminology in which lives are described, but also because of what is revealed about lives and families. Sensitive issues are dealt with in the archives, and painful memories can be revived, or new and distressing facts learned about parents or families. Until the existence of accessible archives and records is more widely known, the historian is in the position of having the responsibility of that knowledge. If the concept of ’co-researchers’ is to be a meaningful one, then it could be argued that historians should enable research participants to explore archives as fully as possible. To conceal them is to retain the tradi- tional power. On the other hand, extreme care has to be taken when viewing the material, and support mechan- isms put in place. Consulting the archive must not be entered upon lightly.

The question of personal patient records and hospital files calls at present for careful self-policing on the part of the researcher. Each hospital has a different policy concerning private records, and if the researcher happens to be an ’insider’, there is sometimes easy access to personal files. In other hospitals these files are closed to researchers. The dilemma for the historian will cease to exist when power over their own records is given to the people with learning difficulties themselves. Historians have not always been aware of the ethical dilemmas surrounding patient files, and this is an urgent issue that needs to be addressed, possibly by means of guidelines issued to hospitals or those record libraries that now contain the patient files of hospitals that have closed (Higgs & Melling, 1997).

In the following section, I explore some ways in which these challenges might be taken up, and how people with learning difficulties could be more closely involved in historical research.

Methods: The ’Memories Group‘ I argue in this paper that one way of developing an

ethical approach to issues of anonymity and ownership in both oral history and archival research is the inclusion of people with learning difficulties in the research process, either as consultants and advisers, or as co-researchers, fellow historians and participants in as much of the research as is possible, so that those who are interested have a role in data collection and data analysis, and engage with the ethical issues as they arise. All these roles will not be immediately accessible to all people with learning difficulties who wish to be involved in research, either because of inexperience, or lack of confidence, but Paula Mitchell has argued that there is constant change and development in the field of research and self- advocacy, and that people with learning difficulties are already pushing at the boundaries of what was thought possible within participative research (Mitchell, 1998). Justine March, Betty Steingold and Susan Justice, members of Hackney’s People First, have written about their role as consultants in Paula Mitchell’s research:

We are research people . . . We can do a lot more than people think we can . . . Researchers should think hard how to help people take part in every bit of the research (March ef al., 1997).

Kirsten Stalker (1998) also argues for the expansion of the research role of people with learning difficulties, though recognising the challenges in this for researchers without learning difficulties. Some of these challenges relate to the fact that researchers themselves are still inexperienced in building in extra time, and devising communication methods to enable people with a num- ber of different and severe learning difficulties to be included, while funding bodies need to be able to respond with extra resources. Others relate to the issues of the accountability and status within the research of the researchers with learning difficulties.

There is, however, already a continuum of possibilities within oral history and archival research for people to access as their skills and confidence increase, and ways in which they can begin to take ownership of their history At a very early stage, the interviewees in the Norfolk research set themselves up as a ‘Memories Group’ and over three years have been developing skills as historians which have enabled them to steer various aspects of the research. This Group moved into uncharted territory. It was concerned with history and the writing of history rather than action research; new skills had to be learned. At first there was ambiguity about the Group’s sense of the distant past. As the meetings continued, a sense of history and a new vocabulary began to develop, culmi- nating in a request from the Group to revisit the hospital and hostels where they had all once lived. At the beginning of the research, some had never used the word ’community’. By the second year, the word had become part of their vocabulary, and they were using it and incorporating it into reflections on their lives.

The Group has now begun to take part in both types of data analysis, oral and archival. Jan Walmsley has discussed the difficulties of sharing research with a group of people who know one another (1991). Most of the Group members were also individual interviewees, so

138 . British Journal of Learning Disabilities Vol. 26 (1 998)

my dilemma was how to bring back confidential data to the group for analysis. Confidentiality of interview tran- scripts obviated their detailed analysis in the Group, but I added to the discussions some relevant but anonymous statements from them and from the other oral historians. Paula Mitchell has written about the time constraints of data analysis and described how she defined the themes, which her consultants and she together then sought to interpret (Mitchell, 1998). My research follows this pattern to a certain extent, though another model also developed in which the Group itself was very obviously drawing out and priortising some of the themes: some aspects of their lives assumed more importance than others and were constantly returned to in group discussions. When this became obvious, I suggested that certain sessions be devoted to analysing all the different opinions concerning one theme. Themes such as work, families, degrees of freedom and control in community care, which kept re-appearing, were discussed, argued over, and inter- preted. For example, the Group reflected on the different stages of transition to the community which added new insights into the processes of community care, the degrees of care and control:

[the research] has been interesting. It has made us think we‘re not, what can I say, not shut in any more . . . you understand what I mean? there’s no other way I can put it really . . . I feel as though I’m opened . . . I feel as though I’m out. I’m not in, I’m not shut in ... I didn’t realize then, what I do now. (Member of Mem- ories Group)

There were new insights into the role of work as a route out of institutions and through stages of community care:

Working was important cos it helped us to get out . , . doing a job, not doing anything wrong, I suppose, it helped, I suppose.. . . (Member of Memories Group)

The archival analysis undertaken by the ’Memories Group’ concerned the general archive material which covers the life-times of the members of the ’Memories Group’ and is in the form of Reports by Medical Super- intendents, newspaper reports, Visitor’s Reports, Admis- sions and Discharge Registers, and photographs. Fido & Potts (1989) also examined archives and used the material to corroborate memories and to clarify dates and eras, though they do not discuss how this was done, or the level of involvement of the interviewees in archival research. I brought copies of the records to the Group sessions, and read them out in short sections. Comments from the Group often contested the evidence represent- ing the official voice (Potts & Fido, 1991), and challenged the stereotypes, and the ’known’ history. The discussions that accompanied a reading of the archives were therefore vital in contributing to a new construction of the history.

The data analysis of archive material by the Group demonstrated both the importance and the possibility of analysing it with research participants in order to gain a fuller historical picture, but on the whole, because it was general rather than personal, it represented no ethical problems. These only arose when more recently I inadver- tently came across references to the life of one of the

members of the Group in the pre-1948 public archive. They described sensitive aspects of his life, and the dilemma is how to enable him to reclaim this part of his life story. The following discussion is a rehearsal of the difficulties and likely outcomes, and I present it as an example of an aspect of research participation and ownership that is critical, and needs careful consideration in advance, though I am still wrestling with the possible implications. The 1930s archives revealed details of his family, demonstrating the attitudes of the time when young women in particular who were poor, who enjoyed a social life, or who had children out of wedlock, were suspected of being, in the language of the time, ’feeble- minded’, and a threat and a menace to society. Several of the entries would probably make painful reading for him. Over the years he has constructed his own life story and provided his own explanations for his institutiona- lisation. This story would be changed by a reading of the archive, and he would need support to undertake this process. I would hope that careful explanation of language and past attitudes would alleviate the effect of these entries, and that, if he decides to consult the archives, he will find them important and meaningful additions to his memories. He will also learn more family names, dates, the name and place of his home village, and will therefore have a sense of being able to complete a family hstory that, apart from the large photograph of his mother that hangs on his wall, her name, and his memories of the last time he saw her, has many gaps.

Support during this type of personal archive research with people with learning difficulties will need to be infornzed support by somebody capable of explaining terminology, contextualising information, and explaining the legal language of certification which was tainted by class and gender attitudes. It is tempting to be over- protective, and this is an issue of adult status: as with all autobiographical work, there are risks involved. On the other hand, it would be unethical for the historian to gloss over these risks in the drive towards participatory research and ownership, and to base actions solely on a general stereotype of the natural resilience of co- researchers. There is a parallel danger in stirring painful memories of the past during interviews (Atkinson, 1997; Booth & Booth, 1994; Jones, 1998; Rolph, 1998). I have felt it is therefore important to raise these issues, so that the research can be managed well, with no damage done to confidence or self-esteem. Although the historian may be tentative about revealing the existence of archive material for fear of distressing people who have been the recipients of inhumane policies in the past, archival research is undoubtedly a movement that is gaining momentum, and it is the right of people with learning difficulties to explore it. Though caution is needed, guidance should be taken from the research participants themselves. It may be that when faced with this particular ethical dilemma, researchers can be encouraged and guided by Mabel Cooper’s conclusions after she had been through the painful process of looking at her records:

There’s so much I didn’t know that I am finding out now. I went to St. Lawrence’s and I went to the archives. Some of it, like the names they called you in them days, hurt a little bit, but otherwise I think it was great.

British Journal of Learning Disabilities Vol. 26 (1 998) . 139

It was something I needed to find ou t . . . I found out about my M u m from my records. She w a s labelled ’feeble-minded’ in the records. I found out from my records that my M u m was begging on the streets of London with me as a one-month baby ... I‘ve enjoyed finding out. Some of it’s a bit upsetting bu t I think, for me, it’s been great, now that I know most of it. I’d rather know than not know. I think if you don’t know then it isn’t fair, it’s no t the same as knowing. So, for me, I’d rather know (Cooper et al., forthcoming).

Conclusion There is an urgent need for debate. Despite the grow-

ing interest of the Self-Advocacy Movement in revisiting the past, there is still a very real danger that people who have for so long been excluded from society, are again to have a similar experience, remaining invisible or having only a faint voice during the telling of their stories and the writing of their history. Instead of participating fully, they a re in danger of being excluded by historians who, in the mids t of a new enthusiasm and a new field of research, a re unaware of current issues, and who are still locked into excluding historical practices (Borsay, 1997). It is not simply the research techniques which are being questioned, but the very role of the historian wi thou t learning difficulties (Aspis, 1997; Walmsley, 1997). I hope that by opening the debate, this paper will enable some of the ethical issues to be clarified, so that Mabel Cooper, Jean Andrews and others with learning difficulties who have an interest and a stake in history, will be able to take pa r t in the debate, be acknowledged as authors or co-authors and historians, participate in the reclaiming of history on more equal terms, and have an important role in the on-going wrestling wi th ethical issues which needs to take place.

Correspondence A n y correspondence should be addressed to Sheena

Rolph, School of Health and Social Welfare, The Open University, Walton Hall, Milton Keynes MK7 6AA.

References

Andrews, J. (forthcoming) Scrub, scrub, scrub . . . bad times and good times: Some of the jobs I’ve done in my life. In WILD Women (eds) ’Good Times: Bad Times’: Stories by Women with Learning Difjczilties. Kidderminster: BILD.

Aspis, S. (1997) Including people with learning difficulties in research. Paper given at Inclusion/Exclusion Conference of Open University’s Social History of Learning Difficulties Research Group. December.

Difficiilties Look Back on Their Lives. Milton Keynes: Open University.

Atkinson, D. (1997) A n Airto/Biographical Approach to Learning Disability Research. Aldershot: Ashgate.

Atkinson, D., Jackson, M. and Walmsley, J. (eds) (1997) Forgotten Lives. Exploring the History of Learning Disability. Kidderminster: BILD.

Atkinson, D. (ed.) (1993) Past Times. Older People with Learning

Barron, A. (1996) A Price fo be Born. Harrogate: Mencap. Bogdan, R. and Taylor, S. J. (1982) Inside Out. The Social

Meaning of Mental Retardation. Toronto: University of Toronto Press.

Booth, T. and Booth W. (1994) Parenting Under Pressure.

Mothers a n d Fathers with Learning Difficiilties. Buckingham: Open University Press.

Borsay, A. (1997) Language and context: Issues in the historiography o f mental impairments in America, c. 1800-1970. Disability arid Society 12 (l), 13341.

Cooper, M. (1997) Mabel Cooper’s life story. In D. Atkinson, M . Jackson and J. Walmsley (eds) Forgofteri Lizies. Exploring the History of Lcarning Disability. Kidderminster: BILD.

’Croydon lives’. In WILD Women (eds) Good Tirnes: Bnd Tinies: Stories by Women with Learning Difficulties. Kidderminster: BILD.

Ferris, G. et al. (forthcoming) ’Croydon lives‘. In WILD Women (eds) Good Times: Bad Tinies: Stories by Wonren zuith Lea rn ing Difficzd ties. Kidderminster: BILD.

down!’ Experiences o f life in a mental handicap institution. Oral History Autumn.

Cooper, M., Ferris, M. and Coventry, M. (forthcoming)

Fido, R. and Potts, M. (1989) ‘It’s not true what was written

Freedland, J. (1997) The Giiardian (The Week) 30th August, 2. Gallagher, B., Creighton, S. and Gibbons, J. (1995) Ethical

dilemmas in social research: No easy solutions. British Joiiriial of Social Work 25, 295-310.

Chasing the ambulance. The emerging crisis in the preservation of modern health records. Social History of Medicine jozirnal 10, 128.

Jones, G. (1998) Distressing histories and unhappy interviewing. joiirnal of the Oral History Society, Autumn.

Kanner, T. (1964) History of the Care and Study of the Mentally Retarded. Illinois: CCThomas.

Leidig, M. (1997) Sunday Telegraph, August 31, 19. Lewis, R. (1997) Living in Hospital and in the Comrniinity.

Brighton: Pavilion Publishing. March, J., Steingold, B. and Justice, S. (1997) Follow the Yellow

Brick Road! People with learning difficulties as co- researchers. British Joiiriral of Learning Disabilities 25, 77-82.

Mitchell, P. (1998) The impact of self-advocacy by adults with learning difficulties on families. Unpublished PhD thesis. Open University.

Morris, J. V. and Alford, K. F. (1959) A community service for mental defectives in a rural area. Public Health LXXIII (4), 1414.

Personal Accounts of Life in a Mental Deficiency Institution. Plymouth: Northcote House.

Empowernien t. Feminist Links, Postmodern Interruptions. Oxford: Oxford University Press.

Rolph, S. (1998) Ethical dilemmas: Oral history work with people with learning difficulties. joirrnal of the Oral History Society, Autumn.

Stalker, K. (1998) Some ethical and methodological issues in research with people with learning difficulties. Disability and Society 13 (l), 5-19.

Swain, J., Keyman, B. and Gillman, M. (1998) Public research, private concerns: Ethical issues in the use o f open-ended interviews with people who have learning difficulties. Disability and Society 13 (1) 21-36.

handicaps: Report of a research project. Mental Handicap Research 4, 2.

Walmsley, J. (1995) Life history interviews with people with learning difficulties. Oral History, Spring.

Walmsley, J. (1997) Including people with learning difficulties: Theory and practice. In L. Barton and M. Oliver (eds) Disability Studies: Past, Present and Fiitzire. Leeds: The Disability Press.

Yow, V. (1994) Recording Oral History. A Practical Guidefor Social Scientists. London: Sage.

Higgs, E. and Melling, J. (1997) Documents and sources:

Potts, M. and Fido, R. (1991) ’A Fit Person to be Removed’.

Ristock, J. and Pennell, J. (1996) Coninizinity Research as

Walmsley, J. (1991) Adulthood and people with mental