changing disability research: participating and emancipatory research with disabled people

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SCHOLARLY PAPER

Changing Disability Research: Participating and Emancipatory Research with Disabled People

Sally French John Swain

Key Words

Participatory research, emancipatory research, disabled people, empowerment.

Summary

This article aims to explain the essential characteristics of participatory and emancipatory research in the field of disability and to explore the similarities and differences between these two approaches. Participatory research has its social and historical roots in qualitative research methodologies whereas emancipatory research has its roots (in disability research at least) in the growth of the Disability Movement.

It is argued that traditional research in the field of disability has been oppressive to disabled people and has failed to assist them in their struggle for civil rights and full participative citizenship.

Broad guidelines are offered to physiotherapists wishing to use participatory and emancipatory approaches in their research with disabled people although it is suggested that a fundamental shift in the way disabled people are viewed, both in professional education and clinical practice, is necessary before any substantial progress can be made.

Introduction Recent developments in disability research have taken two distinct directions; participatory (interpretive) research and emancipatory research. Although these two approaches sometimes overlap and do share certain characteristics, including fundamental critiques of traditional research in the disability field, they have very distinct social and historical roots. In this paper we will explore the different characteristics of participatory and emancipatory research. We believe that if crucial debates are not to flounder purely on conceptual grounds, it is necessary to explore these differences and relate them to current arguments surrounding disability research and the social model of disability.

On the basis of this analysis we shall point, tenta- tively, to key principles for future development which draw on the strengths of both participatory and emancipatory research. We hope that this analysis will help physiotherapists who wish to use the principles of participatory and emancipatory research in large- or small-scale research projects with disabled people.

Participatory Research Participatory approaches have developed from qualitative research methodologies. These methodologies have generally been developed by non-disabled researchers who want to break down traditional hierarchical relationships between researchers and research participants; this can be seen in the change of terminology from ‘research subjects’ to ‘research participants’ and ‘co- researchers’. In research with people who have learning difficulties, for example, there has been a changing orientation to qualitative approaches, with a move away from medical and behavioural research towards a focus on listening to and docu- menting what people with learning difficulties have to say about their lives and experiences. Participatory research thus aims to reflect, explore and disseminate the views, feelings and experiences of research participants from their own perspectives.

I t can be argued that the shift in paradigm towards participatory research is, at least in part, a reflection of broader changes in policy, services and professional practice. It is no coincidence, for instance, that the growth of participatory approaches with people who have learning difficulties accompanied moves towards policies of normalisation and community care. This trend, towards the participation of disabled people in research, is linked more generally with wider changes in society including the development of user-involvement (for example in the Health Service), citizenship and consumer participation (Zarb, 1995).

Participatory research does, however, go further than merely gathering data from research participants about their lives and experiences. Zarb (1992) believes that if participatory research is

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to be genuine, disabled people must be involved in the design, conduct and evaluation of the research and that researchers should be directly account- able to disabled people rather than merely allowing them to take part in the research process. A crucial tenet of participatory research is that it is with people rather than on people (Reason and Heron 1986). The research process is viewed as a potential source of change and empowerment for the research participants as well as a process for influencing professional policy and practice by reflecting the views and opinions of service users. Reason and Heron (1986) believe that participatory research invites people to ‘participate in the co-creation of knowledge about themselves’.

It is important to understand that participatory research is part of the qualitative research tradition and is based upon various assumptions of social reality which are philosophical and ideo- logical in nature (Bryman, 1988). The view that all knowledge is socially constructed and is a product of a particular cultural and historical context has given rise to the qualitative paradigm. Qualitative research arises from phenomeno- logical philosophy which is a doctrine character- ised by the belief that people create their own social world rather than merely being shaped by external social processes. Many qualitative research methods have a long-standing history in sociology and anthropology; symbolic interac- tionism, for example, is a theoretical framework which focuses on people’s meanings and inter- pretations in the construction of social reality (Cuff et al, 1984).

Qualitative research developed, in part, as a reac- tion against quantitative research which arises from positivist philosophy. This doctrine is char- acterised by an insistence that the social world can be studied in the same way as the natural world and that science can only deal with observ- able entities which can be tested directly and quantified and analysed statistically - this stance precludes, of course, the very knowledge that qualitative researchers hope to capture. Social order is viewed as external to research participants and as value-free - the researcher is thus required to play the role of detached ‘objective’ observer. There is a belief that the knowledge produced is independent of the method used and the assumptions underpinning it and that the relationship between research findings and policy change is non-problematic.

Qualitative research, on the other hand, is primarily concerned with meaning, interpretation and giving research participants ‘a right of voice’. There is a commitment to seeing things ‘through the eyes’ of the people being researched and a

belief that social behaviour cannot be grasped until the researcher has understood the symbolic world of the research participants. Researchers in the qualitative tradition accept that the research in which they are engaged cannot be independent of their own values and perspectives.

This is not to imply that qualitative approaches are free of conflict, difficulties and ethical dilemmas when it comes to researching disabled people. I t can, for example, be difficult to find justifications for undertaking research into intimate, personal matters such as sexual behaviour or feelings of vulnerability following impairment or illness. The very process of creating a psychologically safe environment for research participants, during an interview for example, is also potentially exploitative. Self-disclosure by the researcher, for example (which in the context of personal relationships and counselling can foster trust and encourage people to ‘make themselves known’) (Nelson-Jones, 1990; Swain, 1995a), may induce research participants to disclose information which they may later come to regret.

I t is clear that participatory research methodologies have arisen from qualitative research approaches and philosophical arguments about the nature of social reality. Participatory research has been applied to disability but unlike emancipatory research it does not have its roots in a different understanding of disability.

Emancipatory Research Emancipatory research, in the area of disability at least, has its roots in the growth of the Disability Movement and the development of the social model of disability. Disabled people have rejected the notion that their difficulties arise primarily from individual impairment but believe instead that disability is socially created by the many physical and social barriers which exist within society. This is articulated in the social model of disability where disability is viewed, not as a medical entity or an individual problem, but as a civil rights issue. I t can be argued that emancipatory research, unlike participatory research, is not a research methodology as such, but rather part of the struggle of disabled people to control the decision-making processes that shape their lives.

A major characteristic of emancipatory research is the insistence that disabled people should control (rather than merely participate in) the entire research process from the formulation of the research question to the dissemination of the findings. Traditionally, the researcher has been considered the ‘expert’, with specialist knowledge


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and skills, and has had the power to formulate the research process at every stage. This has led to a great deal of research, generally underpinned by the individual model of disability, which disabled people regard, not only as useless in their struggle for full citizenship, but as oppressive in itself. Oliver explains:

‘As people have increasingly analysed their segregation, inequality and poverty in terms of discrimination and oppression, research has been seen as part of the problem rather than as part of the solution. Disabled people have come to see research as a violation of their experience, as irrelevant to their needs and as failing to improve their material circumstances and quality of life’ (Oliver, 1996, page 114).

Abberley (1992) contends that most research in the disability field is oppressive as it imposes upon isolated individuals the view that the problems they experience spring from their own inadequacies. He criticises the Government’s Office of Population Censuses and Surveys (OPCS) reports for their ‘spurious objectivity’, for attempting to ‘depoliticise the unavoidably political’ and for asking disabled people impossible questions such as how difficult they find various tasks when they have no ‘non-disabled’ experience to serve as a comparison.

Similar criticisms have been levelled against research among many other oppressed groups of people. Emancipatory research has, for example, arisen among poor communities in developing countries as a challenge to traditional research approaches which have proved counter-productive (Chambers, 1986).

Emancipatory research goes further than participatory research by aiming to change the social relations of research production (that is the power relationship between researchers and researched) by giving disabled people complete control of the research process. Two key elements of emancipatory research are thus empowerment and reciprocity. Barnes explains:

‘Emancipatory research is about the systematic demystification of the structures and processes which create disability and the establishment of a workable ’dialogue’ between the research community and disabled people in order to facil- itate the latter’s empowerment. To do this researchers mus t learn how to put their knowledge and skills at the disposal of disabled people’ (Barnes, 1992, page 122).

Empowerment is a process whereby people are enabled to take control of their lives. Emancipa- tion, on the other hand, refers to a liberation from restrictions which is brought about by social change. Emancipation of a group of people can further the empowerment of individuals just as

empowerment of individuals can further the emancipation of a group. People who are empow- ered are likely to be conscious of the oppression they face, become assertive about their needs and rights, and come together as a group. This can gradually lead to emancipation through social change which, in turn, increases individual empowerment.

In emancipatory research an agenda set by disabled people is the starting point and the research is formulated and directed by disabled people, in collaboration with researchers, at every stage. Researchers are thus at the service and under the direction of disabled people who are no longer ‘the researched‘ but rather co-researchers and managers of the research. It can be argued that disabled people who play a large role in disability research should be active members of the Disability Movement so that they are in a position to represent democratically the collective voice of disabled people.

Emancipatory research espouses a social model of disability where the foci for research are the physical and social barriers within society which prevent disabled people leading full and active lives. Although participatory research may give support to the social model of disability, it is not inherently associated with it. In emancipatory research the research processes themselves and the outcomes of research are part of the liberation of disabled people - that is part of the process of changing society to ensure their full participation and citizenship. This is not just a process of empowerment as in participatory research, where research participants may be given opportunities t o tell their stories and analyse their situation, but in terms of disabled people taking control of the research processes which shape their lives. The processes and products of emancipatory research are used by disabled people as tools towards the achievement of their liberation. Emancipatory research is thus a form of education and political action.

Although certain features of participatory research and emancipatory research may overlap, one major confusion is the placing of emancipatory research entirely within the qualitative paradigm. There is no reason inherent within emancipatory research to suggest that it should always adopt a qualitative methodology. Indeed it could be argued that a quantitative approach is more likely, given the focus on external barriers rather than the feelings or behaviour of people. Emancipatory research into the accessibility of housing, for example, is likely to take the form of a quantitative survey to produce statistics to influence housing policy. This is not to deny that


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a great deal of consultation with disabled people regarding the barriers they experience with housing will be necessary which is, indeed, qualitative research. The research currently being undertaken at the Policy Studies Institute Measuring Barriers within Society, for example, aims to make a systematic analysis of the physical, social, economic and political barriers within society using both qualitative and quantitative measures (Zarb, 1995). Oliver states:

’If the category disability is to be produced in ways different from the individualised, patholog- ical way it is currently produced, then what should be researched is not the disabled people of the positivist and interpretive research paradigms but the disablement ingrained in the individualistic consciousness and institutionalised practices of what is, ultimately, a disablist society’ (Oliver, 1996, page 143).

Zarb sums up the fundamental difference between participatory and emancipatory research:

‘Participatory research which involves disabled people in a meaningful way is perhaps a pre- requisite to emancipatory research in the sense that researchers can learn from disabled people and vice versa, and that it paves the way for researchers to make themselves “available” to disabled people - but it is no more than that. Simply increasing participation and involvement will never by itself constitute emancipatory research unless and until it is disabled people themselves who are controlling the research and deciding who should be involved and how’ (Zarb, 1992, page 128).

Participatory and emancipatory research are, therefore, two distinct, but perhaps complemen- tary, ways in which researchers can attempt to advance meaningful social change in the lives of disabled people.

The Barriers to Change The changing direction of disability research, towards participation and control by disabled people, confronts numerous barriers. These include the dominant ideology of the individual model of disability; the inaccessibility of research methods; and the structures of control of research production. Our focus now turns to these barriers and the critiques of traditional disability research which have in part laid the foundations for change.

The Dominant Individual Model Large-scale surveys about disability, sponsored by Government and big institutions, invariably take an individualistic definition of disability and are usually quantitative in orientation.

Examples are the Government’s OPCS surveys (Martin et al, 1988) and the Royal National Insti- tute for the Blind’s surveys (Bruce et al , 1991; Walker et al , 1992).

Questionnaires which assess people for benefits, for example the Disability Living Allowance, also have an individualistic orientation focus- ing on people’s limitations which are assumed to be caused by impairment. Rioux (1994) states that most disability research ‘looks a great deal like the research into measles’.

Most research about disability has been in the positivist tradition and has aimed to be objective and apolitical. It is important not to be fooled by ‘objectivity’ and impressive looking statistics; disabled people have been abused and removed from society into institutions on the basis of this so-called ‘scientific’ research (Lawrence and Swain, 1997). Oliver states:

‘Industrial societies have produced disability first as a medical problem requiring medical interven- tion and second as a social problem requiring social provision. Research on the whole has operated within these frameworks and sought to classify, clarify, map and measure their dimensions’ (Oliver, 1992, page 101).

Almost no research about disability has concerned itself with the disabling environment or involved disabled people in the process of research in a meaningful way. Few researchers or institutions have taken the social model of disability or a civil rights perspective as the starting point for their research. This criticism applies to qualitative as well as quantitative research. Ward and Flynn explain:

‘Despite the liberal trappings of the qualitative paradigm, the “social relations of research production” have not changed. Hence there was a need for an emancipatory research paradigm; one which places people with disabilities and their concerns centre stage at every point in the research process aimed at facilitating their empowerment’ (Ward and Flynn, 1994, page 32).

Barriers to Access Disabled people are often barred from the research process because research tools and methods do not take into account their specific needs. It is not unusual, for example, for visually impaired people to be offered questionnaires in tiny print on issues which are particularly rele- vant to them, like public transport. Similarly, people with communication difficulties, such as those with aphasia or learning difficulties, are frequently excluded from the research process altogether. Ramcharam and Grant (1994) state that ‘for persons with profound disability and

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communication problems in particular, there has been an almost systematic and institutionalised exclusion of their views’. These problems are usually attributed to disabled people themselves rather than to inaccessible research methods. Booth and Booth explain:

‘Too often the problems of interviewing inarticulate subjects are seen in terms of their deficits rather than the limitations of our methods. Such a deficit model of informant response is rooted in a view of disability as a problem of the individual. It serves to legitimate the exclusion of, for example, people with learning difficulties from a participatory role in narrative research in ways that mirror their exclusion from the wider society’ (Booth and Booth, 1996, page 67).

There are also many potential causes of conflict in research with deaf people which may arise, not only because the researchers are unfamiliar with sign language, but because they do not understand deaf culture. Jones, a hearing researcher, who undertook research with deaf people with Pullen, a deaf researcher, found that deaf people tended to be far more open and frank than hearing people and that ‘time and punctuality seemed to have a very different meaning’ with deaf people being far less concerned about it than hearing people. The meaning of touch was also different, as Jones explains ‘I was never sure who to kiss and hug and who not to’. I t can be seen that research with deaf people, at least with those who identify themselves with the deaf community, is truly cross-cultural in nature (Jones and Pullen, 1992).

Very often the tests used and the questions posed in research, especially when standard instru- ments are used, are not suitable for disabled people. Yet there are few standardised research tools for people with specific impairments. This problem was experienced by French in 1989 when giving the Eysenck Personality Questionnaire to visually impaired physiotherapists. The question ‘Can you get a party going?’ for example is designed to test extroversion -but getting a party going is, for a visually impaired person, difficult for all sorts of reasons unrelated to personality, such as not knowing who is present and being unable to circulate freely.

The interpretation of research results when researching disabled people also needs to be made in the light of disability. French (1994) found that the job satisfaction of visually impaired physiotherapists was good but not quite as good- as that of sighted physiotherapists. Their scores were influenced positively, however, by the knowledge that most visually impaired people are unem- ployed and by their limited choice of occupation. Bauman suggests that the interpretation of test

results for visually impaired people should always be undertaken with the impact of visual disability in mind. She states:

‘Because of the many ways in which the background of the visually handicapped adult may be very different from the typical history, the psychol- ogist must, in the interpretation of test scores for visually handicapped subjects, be especially concerned that he understands the background and that he makes his interpretation in the light of it’ (Bauman, 1971, page 51).

Disabling Power Structures It is not always easy for researchers to adopt either a participatory or an emancipatory paradigm in their research. This is because of constraints imposed by funding bodies who may have their own research agenda. I t is often the case, therefore, that neither researchers nor disabled people have much control over the ‘material relations of research production’. Disability research is usually funded by health authorities, social services departments, charities and government departments who adhere to an individualistic model of disability. These are powerful bodies which may be reluctant to fund research which challenges their own influence and power. They often insist on quantitative data, are unlikely t o view extensive ongoing consultation with research participants as part of the research process, and may insist that the research findings are disseminated only in academic publications. Even if funding is secured, research may be blocked if it challenges existing institutional philosophies, systems or practices (Swain, 1995b).

Towards Participation and Control We have argued in this paper that participatory research and emancipatory research, though often confused, are distinct in their social and historical roots. We believe that both approaches are useful in the field of disability research. Participatory research, with its roots in qualitative approaches, focuses on individual experience which may, at first glance, seem the antithesis of emancipatory research with its emphasis on external barriers and collective empowerment. Recent debates in the Disability Movement, however (particularly among disabled women) have attempted to extend the social model of disability to encompass individual experiences including those of loss, grief, depression, illness and pain (see French, 1993; Keith, 1994; Crow, 1996).

These debates have been influenced by feminist. research. Feminist researchers focus on the personal experience of research participants and view their work in terms of broad emancipatory


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goals (Banister et al, 1994). One of the guiding principles of feminist research is that ‘the personal is political’ - that personal experiences can lie at the root of political awareness and political action. Feminist researchers have identified oppressive power relationships within research and have found that even the most ‘scientific’ research has been shaped by the perceptions and perspectives of men.

Feminist researchers believe that they must become involved and identify with the, research participants and that the research they undertake must be strongly linked to the struggle of women for full citizenship as articulated by the Women’s Movement (Mies, 1993). Morris (1996) contends, however, that the voice of disabled women is absent from feminist research and that this has led to conflict over issues such as abortion and community care where the views of disabled people have not been considered.

Research by Thomas and Parry (1996) on users’ views about stroke services went, as they admit, some way to being participatory research rather than emancipatory research. They provided the users of these services with the opportunity to express their views, to be critical of the services they had received and to have their voices heard by a professional audience. As well as the possi- bility that this might, in some small way, affect policy or the behaviour of those who read the article, it may also have had an empowering effect on those who were interviewed. It is well known that research does not usually bring about policy change (that is the province of political action) and Shakespeare (1996) is sceptical that emancipatory research will be any more successful in this regard, but research is one important factor which influences the climate of opinion.

Qualitative research with eight visually impaired women (French, 1996) about the experiences and effects of a residential school, also had participatory features. The interviews were open-ended and the women were invited to comment on an early written draft. This led some of the women to reveal cathartic feelings of relief, solidarity with others, and pride at having survived the experience. The research led to a great deal of discussion between the women and the researcher which led to new insights among them concerning the causes and effects of institutional abuse. One of the women was motivated by the research to undergo formal counselling to help resolve some problems which she believed stemmed from that time. The chapter that resulted from the research helped some of the women to share their experiences with others; indeed for some it was the first time anyone had believed their story.

But despite the potential power of participatory research it must not be confused with emancipatory research. In neither Thomas and Parry’s nor French’s research did the research participants set the agenda, plan the research, write it up, or decide where it should be published or to whom it should be disseminated. The disabled people were not in control and the social relations of research production, therefore, remained unchal- lenged.

Conclusion We believe that all research about disability (whether it is conceived as participatory or emancipatory) needs to address and be evaluated against a number of principles which can be stated as questions:

1. Does the research promote disabled people’s control over the decision-making processes which shape their lives?

2. Does the research address the concerns of disabled people themselves?

3. Does the research support disabled people in their struggle against oppression and the removal of barriers to equal opportunities and a full participatory democracy for all?

Researchers, including physiotherapists, have a choice about what to research and how the products of research will be used. They can choose how much disabled people are involved in carrying out the research and shaping the research agenda. Oliver (1992) believes that researchers must interact with disabled people and their represen- tative organisations on a regular basis and must learn to put their knowledge and skills at the disposal of disabled people for them to use in whatever ways they choose.

The way physiotherapists carry out disability research will, however, reflect their education and physiotherapy practice. Disability research is unlikely to undergo any substantial change without more fundamental changes in the way disability and disabled people are viewed within the profession. Disabled people are being empow- ered by the Disability Movement. The question is, can physiotherapy researchers become part of that empowerment?

Authors sally French BSc MSc(Psych) MSc(Soc) MCSP DipTPis a senior lecturer in physiotherapy in the Department of Health Studies at Brunel University College, Isleworth. John Swain PhD is a reader in disability studies in the Faculty of Health, Social Work and Education at the University of Northum- bria, Newcastle upon Tyne. This article was received on June 18, 1996, and accepted on September 9, 1996.


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Address for Correspondence Sally French, 4 Hamilton Road, Thornton Heath, Surrey CR7 8NL.

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