Reflections From Both Sides of the Fence

Introduction

This paper is a reflection on the experiences of having been a researcher and also an object of research. The questions thrown up by such experiences include: the power relations between those who do research and those who provide the material; insider outsider perspectives and the question of objectivity; issues of consent; consultation; the nature of research knowledge.

My experience as a researchee came first and arose from having a child with profound and quite rare disabilities. In some cases I was a surrogate researchee as my daughter’s likes and dislikes were not readily discoverable by someone meeting her casually for an hour; in other cases the researchers were interested in me as a parent, how I was or wasn’t coping, what non-PC attitudes I might be harbouring etc. Family members occupy a kind of middle ground between disability and able-bodiedness and can be theorised into the oppressed class or into the oppressors.

Being Researched

Normally the interviews themselves were pleasant experiences. Insofar as I had a problem, it was with their agenda or supporting hypothesis. Because my daughter’s disabilities were fairly untypical, these often seemed inappropriate to her and me, but the researchers were unable or unwilling to change them. I got asked an awful lot of questions, which seemed designed to demonstrate to me that I was hampering my daughter’s independence (do questionnaire designers realise how transparent they are?), which, in her case, was almost non-existent. I found some of the psychological instruments, which were administered to me, patronising and slanted; my feelings were similar to those of Barbara Ehrenreich in Nickeled and Dimed who had to take similar tests in order to sell burgers in a restaurant. I feel researchers tend to accept such tests as some kind of psychological Holy Writ because they have been validated at a particular institute.

In retrospect, the research I objected to most was a type of action programme, which involved group meetings observed by the researcher whose agenda was that parents whose children had severe disabilities were over-attached to these children and needed to be weaned off this attachment. Whether or not this was actually the case didn’t seem to matter – he ploughed on regardless. Although today’s crop of researchers distinguish between social model participative research and the medical model type, this distinction may not be clear to the target population.

How did I get involved in such projects? Well I would have had a general belief that research was a good thing. Some of the research projects were undertaken by frontline staff I knew in their pursuit of qualifications; sometimes I was recruited by my daughter’s Head of Unit; later I was contacted by people with whom I was involved in research myself. I don’t think I was ever contacted “cold”. In all cases it was difficult to refuse. In the early days of insecure day services I was unwilling to offend the provider; in other cases I wanted to help staff who were friends; and finally when I got involved in research myself, awareness of the difficulties of bagging your respondents led me to agree – even when I groaned inwardly. No one mentioned to me that I had a perfect right to refuse; and on the occasions that I did refuse, I did it in typically Irish fashion by failing to reply in time.

What did I get out of being a researchee? Not a great deal – though I now think that the introduction of respite services – from which I benefited - had a connection with research into parents’ views. However my experiences took place before the days of feedback. I remember coming across a report of a project I had been involved in and trying to work out which of the aliases applied to myself. One project which I took part in was based on feedback at several stages – but it was really aimed at people working in disability services and I was recruited through researcher desperation. Feedback is the most democratic way to do research; it does make considerable demands on the research subject – I used to groan when the envelopes came through the door.

No one offered me money for taking part in research even where I was young and poor and had babysitting expenses. The main benefit was being able to put my point of view; in the cases where the researchers knew me and my daughter I think our lived experience made some impression on them and their fixed ideas.

Changing Sides

At first it felt strange doing research myself especially in the disability area. I of course resolved that I was going to do better than those I had met on the other side of the fence, but I soon came to understand the constraints on the research side. Young researchers – indeed most researchers - seldom have a free choice of topic. Priorities are set by others; there is never enough time and seldom enough money to do things properly and the priority tends to be producing an outcome that will satisfy the funders and enhance – or at least not harm – the researcher’s career prospects. It is not easy to find the correct respondents and in some areas the temptation to cut consent corners is almost irresistible. Where the failings in a research question become apparent in the course of research, it is difficult to change this without the sort of consultation, which will damage your time frame.

Power Relations

My experiences threw up a number of issues which have been explored elsewhere. The first is power relations, which Michael Oliver and Colin Barnes and Kathleen Lynch and Alice Feldman in an Irish context have looked at. Research is something the relatively powerful do to the relatively powerless ostensibly for the latter’s own good. Studying problem people is a recognised field; studying the researchers or the helping industry is much less common; what was the last study of psychologists, politicians, lecturers you came across? The cynical may say that tribunals investigate the powerful because short of a judicial subpoena they can easily resist the researcher; they don’t need anything and generally prefer to maintain their invisibility. The marginalized person on the other hand probably needs something; and the researcher can present the research as possibly contributing to satisfying that need. He/she may well be outside the labour market so time and payment may not be seen as an issue. The research community may argue that payment might be seen as influencing the type of respondent and the type of response though this view is changing judging by the NDA protocols. Many social researchers will contend that their studies are aimed at achieving social change for the disempowered, but such change is slow and if it fails to materialise, marginalized groups may come to see such research as parasitic. However the power relations of research are not that simple. Often the researcher in the field is only slightly more empowered than those he/she is studying. The terms and funding for the study are almost always set somewhere else. Oliver writes of the influence of market forces on research and the increased competition for research contracts.

In such a climate, the economics of the research process play an ever increasing role in determining…. what kinds of disability research is funded (Oliver, 1992).

In many cases the researcher who interfaces with the target population is employed on a short contract and may not even write the conclusions. By the time the reporting back stage arrives, he or she may have moved on and thus may not feel able, or responsible for the feedback stage.

Researching One’s Own Group – Viewpoint and Skills

Is it possible for a disadvantaged group to research themselves? This question was extensively discussed in Disability and Society in 1992 and on a number of occasions since. Oliver and Barnes have pointed out the practical barriers to disabled researchers taking part in the mainstream research project (Oliver and Barnes, 1997). As research becomes more standardised, and, paradoxically, as more protocols are introduced, it becomes more difficult for individuals and groups with a non-standard background to take part.

In the 1992 debate Oliver and others held that the only possible place to do research was from a clear-cut position within the disabled community with the researcher sharing the agenda of the group and refusing involvement with any work that could lead to further oppression. This is the emancipatory model – which has been refined a bit since, with some of the problems identified by people like Bury and Shakespeare. Although studies of specific small groups and their experiences and Action Research can usefully be done from the inside, there is a need for some large scale and data-collection type projects where particular skills and experience loom larger if the results are to have general credibility. As an insider you can only legitimately research a very small area as Colin Barnes has acknowledged. Also it is not easy to wear the hat of researcher and activist at the one time and, whatever your skills, there may be difficulties in getting to the higher reaches of research if you are an activist. “being on the side of” presupposes that you know what your findings will be. But what happens if your research turns up uncomfortable or unpalatable facts – for instance that your group is not as keen on emancipatory methods as you would like, or that they keep falling back into the medical model? Do you keep redoing the questionnaire until you get the answer that fits with your hypothesis? Do you suppress the results? Or do you simply publish, drawing attention to the small nature of the study and the fact that with a different population etc. The researcher needs to “be confident that findings that do not please specific interest groups or funders will not be dismissed or suppressed” (Bury, 1996).

The optimum research outcome for many disabled groups is that the situation, which they know, will be persuasively documented and that well thought-out recommendations will be produced. The 1992 debate (in Disability Handicap and Society) was scathing about supposed “expertise” and certainly the move to mystify and accredit all knowledge can be quite exclusionary; but the quality of a research study relies on the level of training, insight and experience of the chief researcher, and having your heart in the right place is not a substitute for skill. In a reply to Colin Barnes, Bury has written:

Poorly conducted research helps neither the researchers or those wishing to use it. Good research needs people (whether disabled or able bodied) who are trained properly to do it (Bury, 1996:11-113)

Tom Shakespeare has pointed out that to be accepted by government and media progressive disability research needs to meet the general benchmarks set for research (Shakespeare, 1996). Research from the inside often has great depth and richness; its lacks may lie in the areas of analysis and conclusion. When I did my own research into mothers with adult children with severe handicaps in 1991 I found it hard to work up sufficient detachment to write clear conclusions - because I was so close to the subject I was wary of imposing my judgements - or my framework - on the experiences of the women I had interviewed. The frameworks I had, of equality of opportunity and carers as an oppressed class, certain relevance but they did no justice to the complexity of the women’s situation.

Objectivity and/or Detachment?

Although Comte’s idea of objectivity can hardly be defended any more, some degree of detachment is necessary when conducting an analysis. Some commentators believe that training in the research process – capacity building if you like - allows insiders to achieve a degree of objectivity and it is certainly true that the experience of writing something up in (quasi) scientific form will change how you see it.

Feminist and disability researchers wrote the critique of positivist objectivity in the 1980’s – all social research takes place within a context and within a set of social relations and cannot be objective in the scientific sense. Nevertheless Tom Shakespeare’s gloss that “a notional independence and balance is still seen as critical to the academic endeavour” is important (Shakespeare, 1996). It is not easy to measure what the effect of a study will be; the researcher may start with the best of intentions but the whole point is to find out something that is unknown or undocumented. And when research is published it can be used for other purposes and “unintended effects” are common. Research undertaken to prove disabled people’s competence for example, could be used by the State to deny them support funding. Tom Shakespeare is “cynical about the possibility of research achieving major change”(Shakespeare, 1996).

What Sort of Knowledge?

Because research is about knowledge and understanding and a dialogue of shared meanings it should push out boundaries and find new insights rather than stating the obvious over and over again. Recently I went to a seminar, which reported on parents of children with my daughter’s disability. It found that such parents were more than usually stressed and it linked stress to factors like the child’s sleeping patterns. And that’s as far as it went. No recommendations for support schemes. Well so what I asked myself? There are many more useful things the parents in question could have done with the funds available. This concentration on small easily framable studies is a problem. The old question of who decides rears its head again: who decides whose needs are greatest: single parents for example, older or disabled people? Whose needs are greatest within the area of disability itself? How do all these small individual projects link up? Government departments and agencies will fund much research, they may see research as a good thing, but their brief may not include spreading available resources across a number of areas. There are fashions in research topics as in other things

Consent and Feedback

The ethics of consent is another queasy area for the researcher. Ideally consent should be totally free – but if you never used any friendly persuasion whole tranches of respondents would leave no trace. Some people think marginalized groups should be protected from researchers – but that may be patronising and disempowering in its own way. Moore et al have written:

When professionals make decisions about who to protect from research, this has the effect of diminishing other people’s rights, excluding people who could have made the decision for themselves.

Disabled people have the same right to be approached as others but they also have a perfect right to say no, and this should always be made clear. The question of sensitive material is more difficult. Where should the line be drawn and what should the researcher do if his/her questions prove distressing for the interviewee? A lot of research can be done from the inside; many organisations have valuable records, a full and anonymous analysis of these might make some questionnaires unnecessary. However a good qualitative study does have persuasive weight that desktop research will lack but sufficient time for set-up and wind-down needs to be built into the methodology - as the NDA document on protocols emphasises. Sadly, accountability often boils down to the researcher accounting to the funder within the time limit. Making punctuality the only virtue in research is dangerous and having a limited timeframe limits outcomes.

The need to report back to the group being researched has to have higher priority in research and may change the way some research reports are written – just as the FOI Act has changed the way records are kept. Mandatory reporting back should lead to more participative research and greater respect for participants. Oliver and Barnes have pointed to the paradox that in the research world the place to publish is the academic journal – but that such work may not be accessible to the disabled person in the street (Oliver and Barnes, 1997). As Barnes puts it:

The university system …compels academics and researchers to write primarily for other academics and researchers rather than for the general public (1996: 107).

Time constraints may then mean that the popular version never gets written, leading to further alienation of the target group. This leads to the question of consultation. The rhetoric, if not the reality, of participation has come in and advisory groups to research projects are now usual. But this can be a cosmetic exercise designed to give an acceptable face to the conclusions, which the research organisers can point to any time the question of participation arises; and the advisory group may be sealed off from the real decision-making body, or may simply have a token presence there. Consultation can lead to an overuse of articulate individuals – in that they are the easiest way of allowing the researcher fulfil his/her obligations, whereas novice participants may need some training. It is vitally important for everyone that the targeted group has input into the research design – yet in many studies out for tender the parameters are set before even the research team gets its hands on it.

What Sort of Research?

There is also a tendency to standardisation in research. Accountability can be a two-edged sword here. It does ensure value for money in the sense that something gets done but it restricts that something to the easily measurable and not everything in life is measurable. It may pass over entire areas because they cannot be sliced into research parcels. There is a dearth of long-term research in disability; and considering the changes that have taken place in services this is a major deficit. A study of long-term outcomes for children in different educational settings seems long overdue, as does a major study of employment options. Where is the overview of how the employment policies of the last twenty years have/haven’t worked? Conroy’s study on the famous 3% quota found that there was not even a single understanding across the public service of who counted as a disabled person (Conroy and Fanagan, 2001:15, 68). In Ireland a certain amount of data collection research is necessary to set one of those lines in the sand that will allow future measurement. Data may appear dull at first sight but some of the survey research commissioned by the National Disability Agency in the US was instrumental in creating the changed climate that allowed the passage of the Americans with Disabilities Act (1990). Yet even the collection of data leads back to theoretical research and the question of what is disability, where the fault line between disabled and apparently able-bodied lies. There is a need for research into the concept of disability, how it varies across and is related to different cultural settings and life stages, how the models of disability are constructed. Shakespeare, writing in 1997, describes the field as “under-theorised” and Bury in a British context writes “universities provide one of the few spaces within capitalist societies where issues can still be addressed with a degree of independence. (Bury, 1996) Although such studies are not immediately serviceable they often have major impact.

Conclusions

I think the discomfort that I have felt undertaking research as a former researchee is a necessary tension – I hope it has kept me aware of the contradictory pulls of pure knowledge and the consequences for people’s real lives – which at the end of the day are more important than any study. The experience of being researched can be disempowering – but it can also be a channel for marginalized experience to enter the realms of knowledge. Where consultation takes place at all stages, where researchers are committed and accountable the research process may serve the cause of disabled people – but not always. Because research is primarily a road into the unknown rather than a campaign, you can make an informed guess as to the likely destination but unless you have travelled it before you can’t be sure where it will lead.

References

Barnes, Colin. (1996). ‘Disability and the Myth of the Independent Researcher’ in Disability & Society, 11 (1).

Bury, M. (1996). ‘Disability and the Myth of the Independent Researcher: a reply’ in Disability & Society, 11 (1).

Conroy, Pauline & Sarah Fanagan, (2001). Research Project on the Effective Recruitment of People with Disabilities into the Public Service 2000’. The Equality Authority and the Department of Justice Equality and Law Reform: Dublin.

Feldman, Alice. (2002). Unpublished paper on Protocols for Research with Refugees and Asylum Seekers. Social Science Research Centre, UCD.

Fersh and Thomas. (1992). Complying with the Americans with Disabilities Act Quorum Books: Connecticut.

Harris, Louis and Associates, Inc. (1991). Public Attitudes Toward People with Disabilities. New York.

National Disability Authority. (2002), Guidelines for Including People with Disabilities in Research. National Disability Authority: Dublin.

Oliver, M and C. Barnes. (1997). ‘All we are Saying is Give Disabled Researchers a Chance’. Disability & Society, 12 (5).

Oliver, M. (1992). ‘Changing the Social Relations of Research Production?’ Disability Handicap and Society, 7 (2).

Shakespeare, Tom. (1996). ‘Rules of Engagement’. Disability & Society.

Woods, Máiríde. (1996). ‘Costing the Halo’ Occasional Paper: NRB: Dublin.

Zarb, Gerry. (1992). ‘On the road to Damascus: first steps towards changing the social relations of research production’. Disability Handicap and Society, 7(2).