LA DES-­‐REALIZACIÓN DE LA REALIDAD Y EL GIRO PERFORMATIVO 130

In carrying out life history interviews with people with learning disabilities I struggled to adapt mainstream research methods advocated by oral historians and life history researchers to make it possible for them to relate their own life stories. In this article I focus on four main aspects: explaining the research; power and involvement in the interview; the interview process and negotiating meanings.

None of these issues are new to life history or oral historians, though working with people with learning disabilities presented them in quite a stark way.

Explaining the research

Actually finding people to interview and telling them about the project was a taxing process. Surprisingly little is written about this in standard texts. The advice is often confined to construction of sampling frames and the virtues of insider or outsider status for the researcher. Advice also includes sending an introductory letter, or making a preliminary phone call.

People with learning disabilities often are not on the phone, and may be unable to read letters and notices. I am based in a university and do not have direct access to service users. Making contact was not straightforward. On the whole, people taking part were contacted and briefed through intermediaries (MENCAP, Adult Training Centre workers, friends, social workers, adult education tutors). This meant that I was not fully in control of the circumstances in which people were approached, with problematic results. For example, I planned to interview people in their forties, but eventually extended my sampling frame to include thirty to seventy year olds because intermediaries either forgot the age bracket, or were not sure of people’s ages.

Working through intermediaries extended the chain of communication about the research. In one instance the project had to be explained to five people before I got to speak to Eileen, the interviewee. The original contact

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was an adult education tutor who referred me to the Adult Training Centre where I spoke to the receptionist, the key worker, the deputy manager who in turn consulted with the woman’s family. Only then was Eileen herself asked, by her key worker.

After some pilot interviews I decided that an information sheet was needed as the process of explaining to intermediaries was both time consuming and somewhat erratic. Using some data obtained in pilot interviews I drew up an illustrated information sheet. This sheet gave intermediaries information about the research which they could show to potential interviewees and provided a starting point for discussion in the interview itself. It also found another unexpected use as participants showed it to other people to explain what they were doing. One interviewee, Gary, took it away to show his mother.

The information sheet also had limitations. It may have constrained the research, giving people a set of fairly concrete ideas to respond to which may not correspond with their experiences. In one instance it appeared patronising. Alison, for example, was critical of the way she had been approached and argued that she would have preferred to respond in writing to a set of pre-set questions, rather than in a face to face interview where she had felt exposed and vulnerable. This throws an interesting light on the school of thought, associated with feminist research, which advocates free ranging interviews where the interviewee sets the research agenda.26

There was a tension between allowing interviewees free rein, and at the same time informing them about the research to the extent that they could make an informed choice about consent. This tension was made more acute when the approach was made through others. Alison (see above) in reflecting on why she had agreed to be interviewed said, ‘I didn’t want to let Hazel (tutor) down.’ In using Hazel to make contact with Alison I had unwittingly compromised her. When Alison subsequently became distressed about our initial interview it was Hazel who bore the brunt of her distress, not I.

It was not always clear that the person involved was actually consenting to be interviewed, so much as feeling she had no choice. It is a pitfall in research with people with learning disabilities that interviews for assessment and other purposes are fairly commonplace. Bercovici observes: ‘It took many months to convince “natives” of this system that the researcher was not part of the collaborative network they saw as an immutable part of life…they had no social type in their classification system that corresponded to the identity the researcher wanted them to perceive and understand’.27 _Atkinson,

describing her research interviews, furnishes some insights into her interviewees’ perceptions of her: one said to his social worker, ‘She must be very important, asking us all these questions’.28 _{After I had consulted five}

people about interviewing Eileen it might have been hard for her to refuse. The information sheet was no guarantee of avoiding the researcher being viewed as a professional service provider. It did serve to differentiate the research from other interview situations, and to set out a contract specifying

Life history interviews 131 how many meetings, the choice of confidentiality, and the type of feedback people could expect.

However, consent issues remained problematic, especially where, as was often the case, people had little idea of what research is, and what use it may be put to. Of the twenty-two people I interviewed only Alison challenged me beyond the polite, ‘you doing a project?’ level of query.

The practicalities of working with many people with learning disabilities are currently such that far from undertaking ‘emancipatory research’,29 _the

researcher must police her own ethical stance. To achieve a level of understanding of research to the extent that people could challenge the researcher directly was beyond the scope of a small scale research project such as this, though might be a worthy enterprise in its own right.

Except for a few cases I am certain that people were very hazy about my intentions in interviewing them, though this may not be unique to adults with learning difficulties. As McCall and Simmonds observed, ‘What motives, what alien causes, would lead a man to turn on his brethren with an analytic eye?’30 _{How many people invited to take part in any research}

really know what is going on? Perhaps it is not just people with learning disabilities who are confused by this esoteric activity.

Involvement and power in the interview relationship

The importance of developing rapport with informants has been well documented both in research relating to learning disability and in qualitative research more generally.31 _{In this research some strategies were}

particularly helpful with people with learning disabilities.

Like others, I found that it took time to build trust. The first time I met Anna, a woman in her fifties, I obtained little information as it was the first time she had been tape recorded and she asked me to play back our taped conversation seven times within fifty minutes. The interview ended with my promising to let her have a copy of the tape, and she insisted that I name the time I would return with it, despite some reluctance on my part. When I returned as agreed she was ready to show me her photos, and she rewarded me with as much information as she could recall.

On one occasion I felt I may have been too successful in establishing rapport. Janet Finch recounts how easy it was for her to gain the confidence of the clergy wives she interviewed. They were lonely, and welcomed the chance to talk.32 _{Alison confided more in me than she subsequently felt was good for}

her, and became quite distressed. Why this happened I can only guess, but one reason may be that as an experienced counsellor I knew how to establish rapport quickly, and to persist with subjects that appear to be sensitive. And Alison herself was an experienced counsellee; she knew the role well.

Most texts on interviewing recommend that the interviewee is seen alone: ‘Nearly always it is best to be alone with an informant’.33 _{I found that this}

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the request of the interviewee. The first person I interviewed, Isobel, had been briefed by her adult education tutor in advance, but was very nervous when we met, and made an excuse to end the interview after thirty minutes. However, after I’d switched off the tape, she hinted that she’d like her boyfriend there next time. I duly collected Barry before our next interview and the conversation flowed, they were reluctant to end the interview, and Barry subsequently became an interviewee in his own right. He commented on his importance: ‘she might feel better when I’m here, more confident’ and Isobel added, ‘keep me company’.

Involvement of a third person undoubtedly adds a new dimension to the interview. The researcher can observe a social relationship which casts light on the interviewee’s situation. Beryl sat in on two interviews with her friend Eileen. Eventually I realised that Beryl, no less than staff and family, was determined that Eileen stay in the Adult Training Centre she had attended for twenty-five years. When Eileen and I discussed the possibility of her doing some voluntary work with children Beryl intervened with a series of good reasons why she should not: ‘children can be horrible, hit you’, ‘your dad would be upset’, ‘you’re better off in the Centre’. I realised how hard it was for Eileen to make any changes in her life when her friend joined the chorus of voices keeping her where she was.

It is important that the choice of companion is made by the interviewee. Jacqueline, a woman in her forties living with her widowed mother, was contacted through her mother who was present at both interviews. I could not persuade Mrs M to allow me to speak to her daughter alone, and Mrs M’s voice was the only one I heard.

The social relations of research have been a preoccupation in feminist research for many years. Mies argues that when people from ‘underprivileged groups are being interviewed by people from a socially higher stratum it has been observed that the data thus gathered often reflect “expected behaviour” rather than “real behaviour”’.34 _{More recently}

disabled people have begun to challenge traditional research into disability as being oppressive rather than enlightening.35

I belong to a higher social stratum than the interviewees, and I am not disabled. I was aware that this could influence the research, and that the relative powerlessness of the interviewees could distort their perception of me. It is hard to document this. One instance, however, is indicative. Lynne lived with her father, and emphasised in our interviews how much she wanted to move into her own place. This was such a strong theme that I am convinced she perceived me as someone who could help her achieve such a move. It was so powerful a message that after our second interview I contacted an acquaintance in the Social Services Department to ask whether Lynne could get any help. In a sense Lynne was right; I was powerful enough to pick up the phone to someone who could help her.

Ethics aside, I am uncertain how problematic such misunderstandings are. Dean and Foot Whyte argue that there is no such thing as truth telling

Life history interviews 133 in interviews; whatever the interviewee tells you is informative.36 _Stimson37

proposes that ‘life histories will be influenced by the social situation in which they are told’. The problem lies more in not always knowing what social situation people think they are in, in an interview; what kind of impression are they trying to convey; and why.

Within limits interviewees did exercise power. Anna had me switching the tape recorder on and off for her which was not behaviour I had chosen. Isobel arranged for me to collect Barry and take him to her house for an interview. When we arrived she was having a personal review meeting with her social worker. Barry was ushered in to join her and I was left sitting outside the house. I was told later that she had probably used me as a means of getting Barry to the review! In that situation she had exercised power, and I was thwarted. These instances correspond with Stimson and Webb’s findings38 _{that in doctor-patient interactions the patient exercises}

power: to ignore the doctor’s advice, to recast the story in a light favourable to them, to withhold information. The doctor, like the researcher, apparently is the one with the power; but it is not as straightforward as it appears. The interview process

In order to ensure that people were aware of the research focus and its purpose I tried to support the process throughout with concrete information. With a fairly abstract research question it is not as straightforward as it was for George Ewart Evans who used to take along a work tool to stimulate memory.39

My starting point was the illustrated information sheet. The first interview was loosely structured, using prompts from the information sheet. After this I transcribed the tape and developed two diagrams, a ‘life map’ (Figure 1) and a ‘network diagram’ (Figure 2). The life map illustrates key points in the individual’s biography, for example date of birth, schooling, changes of residence. The network diagram contains information about the people currently in the participant’s social networks, with an indication of the degree of reciprocity. If a relationship is primarily one in which the participant receives care an arrow points towards the participant, and vice versa. Two way arrows indicate a reciprocal relationship.

These ‘life maps’ and ‘network diagrams’ provided a basis for the follow- up interview. I talked through the diagrams with the interviewees and pursued any omissions, ambiguities or contradictions. The advantage of diagrams was that they could be shown to participants to see what information has been derived from their words. I saw them as research tools, forcing me to summarise data, and to try to make sense of it in a way people could understand.

In this way I was able to clarify points which were unclear in the first interview, and to make corrections. People’s inability to read once more put the onus on me to be painstaking in checking understanding; yet it was valuable because it gave the opportunity to elaborate on points touched on

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Figure 1 Life map

in the first interview. For example, Gary had glossed over the reasons for his going into hospital in our first interview, but it appeared on the ‘life map’. As we went over this he explained further:

I stayed at home for quite a long time and then I went on there (the ATC), and then I went to Bromham (hospital) for me fits. It’s a long story really because where me fits are, with all the tablets I used to take, I used to take more tablets than I do now and I used to get very bad tempered and shout and swear and turn nasty so they sent me to Bromham for me medication and me tempers. I was only supposed to be there for seven weeks but I was there for quite a long time.

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Figure 2 Eileen’s network

Photographs were a good support. If we met in people’s own homes they showed me the photos on the walls, and talked about them. If we were in another setting I encouraged people to bring photos to our second meeting, and to talk about who was in them, where they were when they were taken, and what was going on. Anna was vague about her past life, but the photos helped establish some kind of chronology, and introduced new people, like her neighbour’s daughter. They also corroborated some of the things she had told me, for example the importance of her friend Helen whom she sees infrequently. There were photos of Anna and Helen smiling as they exchanged Christmas gifts, and Helen was present at Anna’s birthday celebration.

Concreteness was also expressed verbally. ‘Care’ and ‘caring’ are jargon words. People did not ever use them in describing relationships. Instead they used the terms ‘helping’ or, less often, ‘looking after’. I tried to reflect this in the information sheet, following the pilot interviews. This practice, of using people’s own terms rather than imposing language from an academic culture, is based on Glaser and Strauss’s concept, ‘grounded theory’.40

A final prompt was the ‘story’. To end the relationship I compiled a brief life story based on the interview data using, as far as possible, the informant’s own words. Once more, this was usually delivered face to face. The utility of the ‘story’ as a means of checking accuracy varied. Eileen, for example, used the opportunity to correct one or two names, and the date when she left school. By contrast, Alanna used the opportunity to say what she wanted for the future:

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Jan: What about the ending? I didn’t know how to end it, what about the future?

Alanna: I’d like mum if she lives that long to get to know me better…I don’t know, I think other mothers let their daughters do what they want to do and I think I’m a bit left behind if you know what I mean. I’m doing what my mum wants me to do…

In effect, Alanna was saying something very important about herself and her wish to assert her adult status to her mother, providing an important insight with which to end our relationship.

Research interviews with people with learning disabilities throw up similar issues to other research relationships. All interviewers have to develop rapport, to ponder how they are perceived by the interviewee, and to check accuracy. The relative powerlessness of many people with learning disabilities and their inability to read forced me to tackle those issues in a slightly different way. These lessons may have wider implications.