Ideology and Professionalism in Research Concerning Disabled People
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Speech given at ‘The Practical Application of Ethical Guidelines for Participative Research’ Workshop held at Middlesex University, London, UK on Monday 23rd January 2006
Date: 09/01/2006
Venue: Middlesex University, London, UK
Article
Context is everything. In a pantomime we dress up an ugly male in blousy female attire to play the dame but Dior doesn't haul blokes off a building site to model its latest womens collection; professional football is accompanied by constant, often obscene, chanting but this would not be appropriate during the death of King Lear; and, to bring the matter closer to our topic, you might want athletic teenagers to test sports bikes but you would not use them to test special bikes for disabled people; Or would you?
The question might be put ethically but its immediate impact is surely practical, to do with effective market research, establishing brand values and achieving sales.
I start here because we must be clear what we mean by ethics. What we don't mean is the assertion of a theoretical right. Disabled people don't have a right to test equipment designed for them; but manufacturers do have an obligation to test their goods in certain ways if they are to make ethical claims about them, i.e. this product will meet the needs of this kind of person. What we don't want to do is to reduce ethics to a strangulated set of assertions with the same force as a set of United Nations resolutions on disability.
Ethics are the product of honest engagement in a social context. In the case of research on disabled people that social context is the production of information for the public domain which purports to say something about disabled people which can be valued for itself and re-used in integrative intellectual processes; in that sense, research is viral; so if the initial findings are skewed this affects countless downstream applications.
These introductory remarks are important because too often ethics are conflated with the assertion of theoretical rights. Even the content of rights change over time but ethics are much more fluid; they are negotiated more quickly and therefore set aside more quickly.
So, having got that off my chest, let me turn to the given topic. What is it like to be the token disabled person in a piece of research? Well, the first thing that is obvious is that I'm not all disabled people; I don't have any eyes but I have a very fine pair of legs. In short, the notion of a single person to represent all disabled people is preposterous.
Secondly, the kind of people who make this fundamental mistake fall into one or all of the following categories:
- The Eccentric who really knows what disabled people need and has made just the gadget to solve my problem
- The NGO intermediary who is a little more cautious in assuming she knows what disabled people want but who automatically assumes that because she thinks an idea is virtuous everybody else will
- The wild idealist who wants to include a few of everything.
Thirdly, the area of disability research is one which, more than most, is based on an ideological paradigm which is the exact opposite of the paradigm implied in the question put to me about being a sole disabled person representing the whole demographic segment. The current ideology is that to research disability you have to acquire a globally representative sample.
Now you will be relieved to know that I am not going to get into an entanglement about medical and social models of disability; its the kind of cursedly dichotomic debate which misleads the sector and bores outsiders: not all congenitally, totally blind people are the same but they will never get close to understanding the smile of the Mona Lisa; so although they will, like seeing people, vary in their grasp of the significance of the picture, all things being equal they will, as a set, be less likely to appreciate the picture as much as seeing people. So they are both similar enough to be put into a set but they are all different, epidemiologically, demographically, educationally and, above all, psychologically.
Further, to pretend that disabled people are not really disabled at all but are simply handicapped through adverse socio-cultural conditions is to indulge in a preposterous, ideologically-driven delusion which damages those we are trying to protect even more than it will damage our professional reputation.
Let me, then, start with some basics that I have to carry with me into research on disability:
- It is handy to know some demographics and epidemiology of disability; to know the gradations of incapacity; and to know where the etiology is important and where not; for example a person who has reading difficulties because of chromosomal damage presents a different challenge from someone who has never had the correct reading aid
- Secondly, it is handy to know about basic statistics so that you can acquire a robust, representational sample; this should give you an optimum number from which to extrapolate; in general people think that the bigger the sample the better; this, of course, is not true
- Thirdly, it is handy to know a little about different syndromes within a cluster of disability such as visual or physical impairment; for example, it is helpful to separate congenital learning difficulties from mental illness; one serious problem in the sector is the way that the needs of congenitally disabled people define services for the adventitiously disabled
- Finally, it is of overwhelming importance that the sample is appropriate for the research task.
All this seems obvious when it is put down in simple terms but a surprisingly large quantity of research starts out without a firm grasp of these principles.
Let me now say just a little about the final criterion, that the sample should match the task. I mentioned this in a rather light-hearted way at the beginning of this presentation, using the maxim that context is all. As I said then, to make an error about the suitability of a bike for disabled people may bring about a personal misfortune for the buyer and a market failure for the producer; but research is viral. If you produce poor research it may still get past a peer reviewer and then it will infect first its own sector and then other sectors.
I know I keep wandering off the topic but you will gather from all of this that my personal experience of being a token disabled person is frankly bewildering. I don't want to be the only person who understands the basics; and, anyway, I don't want to be an ambassador for all disabled people, not only because this is a useless concept but because it's boring. In any case, in these situations I will almost certainly be classified as disabled and therefore typecast as having nothing to say that's worth listening to. Even people who have had all the disability awareness training that the most enthusiastic London borough requires still assume that my work is in access technology for blind people; I'm blind, so it must be.
Conversely, there are areas where the size of a body and the diversity it requires means that there has to be a single disabled person to represent disabled people in general. This is precisely my de facto, though not de jure, position on the Content Board of the Office of Communication (Ofcom); so, to make this effective, in addition to the factors mentioned above, you have to:
- Be honest in the level of representation you can offer
- Be clear about the steps to be taken where your personal competence falls short
- Help colleagues to discard their false assumptions and help them not to be taken in by the self-serving distortions of the disability sector.
In other words, to be effective I have to be honest about what I know, honest about the way the sector should be understood and honest about the weaknesses of the sector's position. On this last point, let me give you a simple example. There is a vociferous campaign on the part of some deaf people to increase the amount of signing on television; there is also a campaign by blind people to increase the amount of audio description on television; but both groups are extremely coy in providing data for what has to be an evidence-based regulatory framework. To force signing and audio description on companies is both to re-allocate their accessibility budget and to deprive executives of their autonomous responsibility to provide customer satisfaction and shareholder value.
I have to say, and it has very little to do with me, that Ofcom is an exemplary public sector body in the field of diversity and the commissioning and interpretation of research; here is the structure:
- Disabled person on Content Board which has responsibility not only for broadcasting content standards but also for accessibility and media literacy
- Advisory Committee on Older and Disabled People which monitors and advises Ofcom on all matters including research
- Disability Research programme through an upwardly weighted sample in general longitudinal research plus specific pieces of disability related research.
I turn now to the question of the inclusion of all kinds of disabled people in research. Of course it is always easier to work with the articulate and the self confident than with the withdrawn and the vulnerable (well, seeing as how we are disabled, not too articulate and not too self-confident, thank you!). The first thing I want to say about this should be obvious but it isn't. If you undertake research on the autonomous use of a product or service using a sample of people who will not behave autonomously, you've got the wrong sample. So, for example, if you want to undertake research on services in museums for disabled people you have to start with an assessment of who is likely to want autonomous access: people with power driven wheelchairs probably do; people who are totally blind probably don't. You could, of course, undertake this research first, to establish the range of autonomies required; you might not have enough budget for this and therefore you would have to make assumptions; but the assumption of functional autonomy is another piece of ideological distortion.
So where you must include the more vulnerable, less vocal people is where those very attributes are an important factor in tandem with their disability; it might well be that this social orientation is more important than the classifiable disability itself. On that basis, you have to stop classifying all disabled people in the same demographic range with the same epidemiological classification as identical. This is tough stuff; but don't over-complicate it. Think carefully about what you are trying to find out, what puzzles you, and the sampling will become simpler. The real problem isn't getting what you want, it's knowing what you want to know. Of course, that isn't the same thing as knowing what answer you want.
There is, then, a need to include vulnerable and less articulate people where the sample requires them but don't make an ideology of it. On the other hand, there is a strong case for making a special effort to include those who are isolated or difficult to access. There are two good reasons for this:
- First, the NGO secto invariably over-represents the articulate, middle class disabled demographic; it particularly favours the tiny minority of paediatrically disabled people over adventitiously disabled people. In other words, it favours those who have grown up in the disability silo
- Secondly, most disability is linked with age and associated with low income. Figures vary but disabled people are much more likely to be isolated and socially deprived than their able bodied peers.
However, again, don't ideologise; if you're researching the uptake of a wine tasting holiday in France with braille notes and guides, don't include those in the research who are poor and have grown out of socialising in their own territory.
Now a few thoughts on the way to involve disabled people in research design and implementation:
- Observe the separation principle; separate design and implementation advisory functions from research subjects; too often subjects warp research and non disabled people, as a matter of principle, dislike over-ruling disabled people
- Be professional this means combining the empathy of the mentor with the toughness of the researcher; this is extremely difficult and you may want to consider these as functions for separate people so that research subjects have their own mentor and advocate
- Explain the benefits; if people are giving their time, even if they are paid, they are entitled to know why they are being asked to do what they are doing
- Pay the going rate. In universities the going rate may be expenses and a nominal fee only but that should not apply to major corporates whose research is conducted in pursuit of profit. Commercial companies should NEVER demand subsidies from disabled people.
As usual, the final plea in all these presentations is to ask me what I would do about training. The answer, simply, is in what I have said; we need to teach the basics about the relationship between sampling and purpose. That is a rather crisp formulation but it's only a slightly elegant way of saying, do what I've told you to do. Some of my remarks are very disability specific but most of them apply to all good research. The problem with disability is that the laudable attempt to treat people well has led us into some unhelpful ideological positions, so we must be careful.
To return, then, to my opening remarks. Sampling on the basis of a rights theory, ensuring that all manner of disabled people are included, whether they are relevant to the research or not, is as much of a danger as not taking disabled people fully into account where they are relevant in a sample. In an observation which relates to where I began; although he can read a score, don't ask a deaf person to comment on an interpretation of Mahler; and although he can enjoy the ride, don't ask a blind man to test drive a Ferrari!