DISABILITY AND REHABILITATION, 1992; VOL. 14, NO. 4, 183-186
Clinical Commentary
Researching disability: the way forward SALLY FRENCH Accepted for publication: January 1992
Disabil Rehabil Downloaded from informahealthcare.com by York University Libraries on 12/28/14 For personal use only.
Keywords Impairment, social policy, empowerment
Summary This paper critically examines the individualistic and medicalized assumptions underlying much research on disability. The OPCS surveys of disability, in particular, are examined. Based on the perceptions of disabled people and their organizations, and drawing on a series of seminars on disability research which took place in 1991, an alternative social view of disability is presented and applied to research. It is concluded that the assumptions underlying much disability research, especially when they are translated into practice, are oppressive to disabled people, and that participatory and emancipatory research needs to be developed in order to assist disabled people in their struggle for empowerment.
1. Introduction
Collecting data on disabled people, and the extrapolation of information from that data, as exemplified in the Government’s recent are often considered both necessary and good. However, this type of research can distort the meaning of disability as well as oppressing disabled people themselves. The OPCS surveys estimated disabled people in Great Britain to number approximateiy 6 million, but of course the criteria used to define ‘disability’will dictate the number of disabled people found. Clearly the definition of disability which is used sets the tone of the research. The researcher can take, as was done in the OPCS survey, an individualistic, medicalized view of disability, suggesting that the impairment, and the impairment alone, creates the disability. However, it is possible to take a social view of disability where it is defined in terms of the barriers disabled people face - the library steps blocking the wheelchair user’s entry, or the attitudinal and physical obstacles barring access to employment, education and housing. If the first stance is taken then the questions posed by the researcher will be based on impairment and not on the measures which could be taken by society to alleviate Correspondence to: Ms Sally French, 4 Hamilton Road, Thornton Heath, Croydon, Surrey CR7 8NL, UK.
or eliminate lack of access. It is on these grounds that the OPCS reports have been criticized by the British Council of Organizations of Disabled People. It obviously makes an enormous difference whether the questions are posed in terms of ‘what people cannot do’ rather than in terms of how society can be changed to enable disabled people to participate fully. For example, in place of the OPCS question ‘What complaint causes your difficulty in holding, gripping and turning things?’, Oliver3 substitutes the question ‘What defects in the design of everyday equipment like jars, bottles and tins, causes your difficulty in holding, gripping and turning them?’, and in place of the question ‘Did you move here because of your health problem/disability?’ he writes ‘What inadequacies in your housing caused you to move here? ’ It is important to remember that a formalized mass of respectably funded and gathered information, laid out and printed meticulously, is not per se objective; we must not be fooled by such data, however impressive they look. In the OPCS 1988 surveys, for example, severity is conceptualized as the extent to which the performance of an individual’s everyday activities is limited by impairment. People were categorized according to the perceived severity of their disabilities, with 10 severity levels from which to choose, but these decisions were made with no regard to social context or individual circumstances. It is stated, for example, that ‘not being able to walk is clearly more limiting than being able to walk 50 yards’, and yet the reverse may be the case if the criterion for provision of mobility aids is the luck of ability to walk this distance. This has led to criticisms that any attempt to discriminate finely different levels of severity is nothing more than the subjective opinions of mainly able-bodied ‘experW.4 Oliver3 states: The very idea that experts divorced from the direct experience of disability, can set a research agenda for disability is, itself, fundamentally flawed. It is the product of a society which has a positivistic consciousness and a hierarchical social structure which accords experts an elite role. Agenda setting, whether it be in policies, policy making or service provision, is part of a process of struggle and this is equally true of agenda setting in disability research . . . the major issue on the
0963 - 8288192 $3.00 0 1992 Taylor & Francis Ltd.
S. FI?ench
research agenda for the 1990s should be: do researchers wish to join with disabled people and use their expertise and skills in their struggles against oppression, or do they wish to continue to use these skills and expertise in ways which disabled people find oppressive?
Disabil Rehabil Downloaded from informahealthcare.com by York University Libraries on 12/28/14 For personal use only.
KeithS draws our attention to the lessons we can learn from feminist research with regard to the underlying, and often erroneous, assumptions on which research is frequently based. She states: Feminist research has taught us about the ways in which our own experiences, and our everyday lived reality, colour and shape our interpretations of the social world. It also shapes what gets researched and written about. Keith also points out, with regard to research on carers, that only one version of a set of events has been studied (that of the carers) which has served to alienate disabled and elderly people by disregarding their experiences and viewing them as ‘the problem’. Morris6 believes that ‘They [able-bodiedresearchers] have few tools with which to understand our subjective reality because our own definitions of the experience of disability are missing from the general culture.’ Further problems arise in the OPCS surveys when the severity of one impairment is compared with that of another. Is it really more disabling not to be able to touch one’s knees and then straighten, than to fail to recognize a friend across a room, or twice as severe as the inability to hear a quiet voice across a room, as the OPCS survey suggests? As disabled people so frequently point out, disability has more to do with the organization of society, including the status and income of disabled individuals themselves, than their impairments. In part the OPCS acknowledge this by stating that ‘Some people with impairments may, as a result of aids and appliances, have only a very minor level of disability and, as such, fall below the threshold level.’ Examples are given of spectacles, pacemakers and medication eliminating disability, but these ideas are not expanded to more severe impairments. Many questions in the 1988 OPCS surveys are structured in such a way that presenting them to people with long-standing impairments, and requiring an answer, sets them an impossible task. Abberley’ suggests that ‘to ask someone if they have difficulty is to ask them to make a social comparison which a disabled person is in a particularly unsuitable position to do’. If I am asked, as a person who has been partially sighted from birth, how difficult I find it to read newsprint, how can I answer accurately without knowledge of how difficult those around me find the activity? A meaningful answer would 184
also be far more complex than a closed ‘Yesho’ answer could accommodate, for my ability has everything to do with which newspaper I am attempting to read, the quality and boldness of the print, the lighting conditions and whether or not my visual aids are to hand. Because many disabled people have never experienced ‘normality’ they are likely to under-report their difficulties.8 Anderson et aL9 demonstrate how important is the wording of questionnaire and interview items, and found that if people were asked ‘Are you able . . .?’ rather than ‘Do you have difficulty . . .?’ there was an under-reporting of difficulty of up to 20%. Researchers can choose, therefore, to pose questions suggesting that the disability is contained within the disabled individual or, in contrast, those which suggest that disability is a social phenomenon. Abberley’ states that ‘It is a political decision, conscious or otherwise, to employ questions of the first type rather than the second.’ If a social view of disability is taken, then disability becomes a political issue, an issue of civil rights and not of medical needs. Abberley expands his case further stating that ‘Attempts to depoliticise the unavoidably political, to examine the complex and subtle through crude and simplistic measures, indicates by negative example some of the things that good research in this area, and indeed any research, requires.’ Those then who engage in disability research, those able-bodied ‘experts’ of disability, in choosing to reflect a medicalized view of disabled people, can themselves become their oppressors, for disabled people perceive their situation in political terms rather than viewing themselves as victims of random personal tragedy. 2. Disability research and professional practice
Condie, in her keynote speech to the annual conference of the Chartered Society of Physiotherapy,Io and in a later article based on that speech,ll relied heavily on OPCS survey data. She advocated a broad view of disability encompassing a social perspective, impressing upon physiotherapists that they should ‘read around’ the subject of disability and consult colleagues, but never mentioned consulting disabled people or their organizations. It is unfortunate that the results of large-scale surveys, such as those conducted by OPCS, have been used to inform professional practice. Even though a widening of perspectives on disability is advocated by most professionals, and is generally welcomed, we must beware, for if this is in harness with narrow medicalized definitions, then more aspects of disabled people’s lives are likely to fall under medical control. Although service planning is often based on research
Researching disability: the way forward which is flawed, it must also be said that much professional practice is based on little or no research or sound theoretical underpinnings, a situation which is also undesirable. As Finkelstein’* states:
Disabil Rehabil Downloaded from informahealthcare.com by York University Libraries on 12/28/14 For personal use only.
none of the existing service approaches to disability were set up on the basis of an in-depth understanding of what disability is about . . . The body of knowledge which has been created by service provision which enables professionals in the field of disability to call themselves experts came into being without any real attempt to understand this subject. An example of this is ‘conductive education’ (the Pet0 technique). Despite the expansion, professionalization and general disruption this approach has created (the Government has put large sums of money into it, degrees and higher degrees are offered in it, and families are breaking u p under the strain of it) sound research and a firm theoretical basis are practically niI.I3 KinsmanI4 states that ‘The theoretical background is not well known, for Pet0 wrote little about conductive education, and there have been few publications from the institute and these mention little about the underlying theory.’ Although professional practice in the absence of sound theory and research is sometimes justifiable, professional practice based on little or no research can do serious harm. Examples of this are the practice of preventing deaf children from using sign language (which disrupts their language development) and the practice of preventing visually impaired children from using their sight (which prevents it developing its full potential) which was practised in schools for visually impaired children until the Second World War.” 3. What sort of disability research is needed?
It can be seen from the above account that a major problem regarding disability research is that, other than being ‘subjects’, disabled people are rarely involved in it - and that this situation leads to inappropriate questions being asked and inappropriate services being developed. There has been an underlying assumption that disability is the result of impairment, and that disabled people are dependent and in need of cure or care. Many disabled people and their organizations now believe that a more participatory style of research should be adopted where disabled people are consulted at every stage of the research process, and assisted and encouraged to carry out research into disability issues themselves. These ideas are not new; participatory/emancipatory research is an approach which has been advocated by people who work in underdeveloped countries and those who work with them. ChambersI6 refers to it as ‘a new
paradigm’, ‘a coherent and mutually supportive pattern of concepts, values, methods and actions amenable to wide application’. Morris6 believes that ‘If disability research is to be emancipatory research then it must be part of disabled people’s struggle to take over ownership of the definition of oppression . . .’. She believes that able-bodied researchers should be the allies of disabled people, that they should ask ‘where are the disabled researchers and academics?’, and that they should challenge discrimination and ensure that the research they conduct empowers disabled people. Zarb7 draws a distinction between ‘participatory research’ and ‘emancipatory research’, believing that research cannot be emancipatory unless it is empowering, but that empowerment cannot be given but rather must be taken. He believes that participatory research is a prerequisite to emancipatory research but is not the same thing. Partnership with disabled people and their organizations is only a first step. He states: Participatory research which involves disabled people in a meaningful way is perhaps a prerequisite 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 points out that neither researchers nor disabled people generally have much control over research funding (although guidelines can be devised to help decide which bodies to seek funding from) but that they can go some way to changing the social relations of research production, by changing their practice in ways which are relevant to the lives of disabled people. He believes that research can be categorized with regard to how far it is ‘participatory’ or ‘emancipatory’ by asking questions such as the following.
Participatory research 1. Who controls what the research is about and how it is done? 2. How far are disabled people involved in the research process? 3. Can disabled people influence future directions, and are there pathways by which disabled people can be critical of the research? Emancipatory research 1. How alienating is the research practice for researchers and disabled people participating in it? 185
S. French
2. What opportunities does the research create for selfreflection and mutual sharing of experience and understanding between researchers and disabled people? 3. What happens to the products of research? 4. Does the research have the potential to empower disabled people?
Disabil Rehabil Downloaded from informahealthcare.com by York University Libraries on 12/28/14 For personal use only.
4. Conclusion
Ways must be found of encouraging and enabling disabled people to carry out research into their own situation, and for research practice to be adapted to ensure their full participation. James and Pullen,’s a hearing and a deaf researcher, point out that ‘In the past deaf people have been denied the opportunity of making their opinions known because research has used written or spoken language. Our study has demonstrated the value of using interviewing techniques suited to the deaf person rather than the interviewer.’ Oliver,19talking of disability research, states: The late twentieth century has seen a crisis of these productions of disability because disabled people have penetrated the medical and individual ideologies underpinning them. What’s more, having done so, they are now engaged in a struggle to produce disability as social oppression. As this struggle continues and disabled people grow in strength, the crisis in disability production will deepen and researchers will be forced to ask the question Howard Becker asked thirty years ago: Whose side are you on? Disabled people are now being empowered by the disability movement; the question is, can research become part of that empowerment?
1988. 3 Oliver M. The Politics of Disablement. London: Macmillan, 1990. 4 Abberley P. Handicapped by numbers: a critique of the OPCS
5
6
7
8
9
10 11 12
13
14 15
16
17
References 1 OPCS Disability Survey of Disability in Great Britain. Report 1:
18
The prevalence of disability among adults. Office of Population Censuses and Surveys. London: Her Majesty’s Stationery Office, 1988. 2 OPCS Disability Survey of Disability in Great Britain. Report 2: The prevalence of disability among children. Office of Population Censuses and Surveys. London: Her Majesty’s Stationery Office,
19
186
disability surveys. Paper presented at the second of a series of Disability Research Seminars. Policy Studies Institute, London, 2 March 1991. Keith L. Some thoughts on the current debate on disabled and elderly people and carers. Paper presented at the fourth of a series of Disability Research Seminars. Policy Studies Institute, London, 5 June 1991. Morris J. Personal and political: a feminist perspective on researching physical disability. Paper presented at the fourth of a series of Disability Research Seminars. Policy Studies Institute, London, 5 June 1991. Abberley P. The significance of the OPCS disability survey. In: Oliver M (ed.) Social Work, Disabled People and Disabling Environments. London: Jessica Kingsley, 1991; 156- 176. Patrick DL (1989) Screening for disability. In: Patrick DL & Peach H (eds) Disublement in the Community. Oxford: Oxford University Press, 1989; 19- 38. Anderson J, Bush J, Berry C. Performance versus capacity: a conflict in classifying function for health status measurement. Cited in Patrick DL & Peach H (eds) Disablement in the Community. Oxford: Oxford University Press, 1989; 31. Condie E. Keynote lecture presented at the Annual Conference of the Chartered Society of Physiotherapy, 1990. Condie E. Therapeutic approach to physical disability. Physiotherapy, 1991; 77: 12-71. Finkelstein V. Disability: an administrative challenge. In: Oliver M (ed.) Social Work, Disabled People and Disabling Environments. London: Jessica Kingsley, 1991; 19 - 39. Oliver M. Conductive education: if it wasn’t so sad it would be funny. Disability, Handicap and Society, 1989; 4: 197 - 200. Kinsman R. A conductive education approach to stroke patients at Barnet General Hospital. Physiotherapy, 1989; 75: 418 -420. Corley G, Robinson D, Lockett S. Partially Sighted Children, London: NFER/Nelson, 1989. Chambers R. Normal professionalism, new paradigms and development. Discussion Paper 227. Institute of Development Studies, Brighton, 1986. Zarb G. On the road to Damascus: first steps towards changing the relations of disability research production. Paper presented at the fifth of a series of Disability Research Seminars. Policy Studies Institute, London, 26 September 1991. James L, Pullen G. Doing deaf research. Paper presented at the first of a series of Disability Research Seminars. Policy Studies Institute, London, 6 February 1991. Oliver M. Changing the social relation of research production. Paper presented at the first of a series of Disability Research Seminars. Policy Studies Institute. London, 6 February 1991.
Clinical Commentary
Researching disability: the way forward SALLY FRENCH Accepted for publication: January 1992
Disabil Rehabil Downloaded from informahealthcare.com by York University Libraries on 12/28/14 For personal use only.
Keywords Impairment, social policy, empowerment
Summary This paper critically examines the individualistic and medicalized assumptions underlying much research on disability. The OPCS surveys of disability, in particular, are examined. Based on the perceptions of disabled people and their organizations, and drawing on a series of seminars on disability research which took place in 1991, an alternative social view of disability is presented and applied to research. It is concluded that the assumptions underlying much disability research, especially when they are translated into practice, are oppressive to disabled people, and that participatory and emancipatory research needs to be developed in order to assist disabled people in their struggle for empowerment.
1. Introduction
Collecting data on disabled people, and the extrapolation of information from that data, as exemplified in the Government’s recent are often considered both necessary and good. However, this type of research can distort the meaning of disability as well as oppressing disabled people themselves. The OPCS surveys estimated disabled people in Great Britain to number approximateiy 6 million, but of course the criteria used to define ‘disability’will dictate the number of disabled people found. Clearly the definition of disability which is used sets the tone of the research. The researcher can take, as was done in the OPCS survey, an individualistic, medicalized view of disability, suggesting that the impairment, and the impairment alone, creates the disability. However, it is possible to take a social view of disability where it is defined in terms of the barriers disabled people face - the library steps blocking the wheelchair user’s entry, or the attitudinal and physical obstacles barring access to employment, education and housing. If the first stance is taken then the questions posed by the researcher will be based on impairment and not on the measures which could be taken by society to alleviate Correspondence to: Ms Sally French, 4 Hamilton Road, Thornton Heath, Croydon, Surrey CR7 8NL, UK.
or eliminate lack of access. It is on these grounds that the OPCS reports have been criticized by the British Council of Organizations of Disabled People. It obviously makes an enormous difference whether the questions are posed in terms of ‘what people cannot do’ rather than in terms of how society can be changed to enable disabled people to participate fully. For example, in place of the OPCS question ‘What complaint causes your difficulty in holding, gripping and turning things?’, Oliver3 substitutes the question ‘What defects in the design of everyday equipment like jars, bottles and tins, causes your difficulty in holding, gripping and turning them?’, and in place of the question ‘Did you move here because of your health problem/disability?’ he writes ‘What inadequacies in your housing caused you to move here? ’ It is important to remember that a formalized mass of respectably funded and gathered information, laid out and printed meticulously, is not per se objective; we must not be fooled by such data, however impressive they look. In the OPCS 1988 surveys, for example, severity is conceptualized as the extent to which the performance of an individual’s everyday activities is limited by impairment. People were categorized according to the perceived severity of their disabilities, with 10 severity levels from which to choose, but these decisions were made with no regard to social context or individual circumstances. It is stated, for example, that ‘not being able to walk is clearly more limiting than being able to walk 50 yards’, and yet the reverse may be the case if the criterion for provision of mobility aids is the luck of ability to walk this distance. This has led to criticisms that any attempt to discriminate finely different levels of severity is nothing more than the subjective opinions of mainly able-bodied ‘experW.4 Oliver3 states: The very idea that experts divorced from the direct experience of disability, can set a research agenda for disability is, itself, fundamentally flawed. It is the product of a society which has a positivistic consciousness and a hierarchical social structure which accords experts an elite role. Agenda setting, whether it be in policies, policy making or service provision, is part of a process of struggle and this is equally true of agenda setting in disability research . . . the major issue on the
0963 - 8288192 $3.00 0 1992 Taylor & Francis Ltd.
S. FI?ench
research agenda for the 1990s should be: do researchers wish to join with disabled people and use their expertise and skills in their struggles against oppression, or do they wish to continue to use these skills and expertise in ways which disabled people find oppressive?
Disabil Rehabil Downloaded from informahealthcare.com by York University Libraries on 12/28/14 For personal use only.
KeithS draws our attention to the lessons we can learn from feminist research with regard to the underlying, and often erroneous, assumptions on which research is frequently based. She states: Feminist research has taught us about the ways in which our own experiences, and our everyday lived reality, colour and shape our interpretations of the social world. It also shapes what gets researched and written about. Keith also points out, with regard to research on carers, that only one version of a set of events has been studied (that of the carers) which has served to alienate disabled and elderly people by disregarding their experiences and viewing them as ‘the problem’. Morris6 believes that ‘They [able-bodiedresearchers] have few tools with which to understand our subjective reality because our own definitions of the experience of disability are missing from the general culture.’ Further problems arise in the OPCS surveys when the severity of one impairment is compared with that of another. Is it really more disabling not to be able to touch one’s knees and then straighten, than to fail to recognize a friend across a room, or twice as severe as the inability to hear a quiet voice across a room, as the OPCS survey suggests? As disabled people so frequently point out, disability has more to do with the organization of society, including the status and income of disabled individuals themselves, than their impairments. In part the OPCS acknowledge this by stating that ‘Some people with impairments may, as a result of aids and appliances, have only a very minor level of disability and, as such, fall below the threshold level.’ Examples are given of spectacles, pacemakers and medication eliminating disability, but these ideas are not expanded to more severe impairments. Many questions in the 1988 OPCS surveys are structured in such a way that presenting them to people with long-standing impairments, and requiring an answer, sets them an impossible task. Abberley’ suggests that ‘to ask someone if they have difficulty is to ask them to make a social comparison which a disabled person is in a particularly unsuitable position to do’. If I am asked, as a person who has been partially sighted from birth, how difficult I find it to read newsprint, how can I answer accurately without knowledge of how difficult those around me find the activity? A meaningful answer would 184
also be far more complex than a closed ‘Yesho’ answer could accommodate, for my ability has everything to do with which newspaper I am attempting to read, the quality and boldness of the print, the lighting conditions and whether or not my visual aids are to hand. Because many disabled people have never experienced ‘normality’ they are likely to under-report their difficulties.8 Anderson et aL9 demonstrate how important is the wording of questionnaire and interview items, and found that if people were asked ‘Are you able . . .?’ rather than ‘Do you have difficulty . . .?’ there was an under-reporting of difficulty of up to 20%. Researchers can choose, therefore, to pose questions suggesting that the disability is contained within the disabled individual or, in contrast, those which suggest that disability is a social phenomenon. Abberley’ states that ‘It is a political decision, conscious or otherwise, to employ questions of the first type rather than the second.’ If a social view of disability is taken, then disability becomes a political issue, an issue of civil rights and not of medical needs. Abberley expands his case further stating that ‘Attempts to depoliticise the unavoidably political, to examine the complex and subtle through crude and simplistic measures, indicates by negative example some of the things that good research in this area, and indeed any research, requires.’ Those then who engage in disability research, those able-bodied ‘experts’ of disability, in choosing to reflect a medicalized view of disabled people, can themselves become their oppressors, for disabled people perceive their situation in political terms rather than viewing themselves as victims of random personal tragedy. 2. Disability research and professional practice
Condie, in her keynote speech to the annual conference of the Chartered Society of Physiotherapy,Io and in a later article based on that speech,ll relied heavily on OPCS survey data. She advocated a broad view of disability encompassing a social perspective, impressing upon physiotherapists that they should ‘read around’ the subject of disability and consult colleagues, but never mentioned consulting disabled people or their organizations. It is unfortunate that the results of large-scale surveys, such as those conducted by OPCS, have been used to inform professional practice. Even though a widening of perspectives on disability is advocated by most professionals, and is generally welcomed, we must beware, for if this is in harness with narrow medicalized definitions, then more aspects of disabled people’s lives are likely to fall under medical control. Although service planning is often based on research
Researching disability: the way forward which is flawed, it must also be said that much professional practice is based on little or no research or sound theoretical underpinnings, a situation which is also undesirable. As Finkelstein’* states:
Disabil Rehabil Downloaded from informahealthcare.com by York University Libraries on 12/28/14 For personal use only.
none of the existing service approaches to disability were set up on the basis of an in-depth understanding of what disability is about . . . The body of knowledge which has been created by service provision which enables professionals in the field of disability to call themselves experts came into being without any real attempt to understand this subject. An example of this is ‘conductive education’ (the Pet0 technique). Despite the expansion, professionalization and general disruption this approach has created (the Government has put large sums of money into it, degrees and higher degrees are offered in it, and families are breaking u p under the strain of it) sound research and a firm theoretical basis are practically niI.I3 KinsmanI4 states that ‘The theoretical background is not well known, for Pet0 wrote little about conductive education, and there have been few publications from the institute and these mention little about the underlying theory.’ Although professional practice in the absence of sound theory and research is sometimes justifiable, professional practice based on little or no research can do serious harm. Examples of this are the practice of preventing deaf children from using sign language (which disrupts their language development) and the practice of preventing visually impaired children from using their sight (which prevents it developing its full potential) which was practised in schools for visually impaired children until the Second World War.” 3. What sort of disability research is needed?
It can be seen from the above account that a major problem regarding disability research is that, other than being ‘subjects’, disabled people are rarely involved in it - and that this situation leads to inappropriate questions being asked and inappropriate services being developed. There has been an underlying assumption that disability is the result of impairment, and that disabled people are dependent and in need of cure or care. Many disabled people and their organizations now believe that a more participatory style of research should be adopted where disabled people are consulted at every stage of the research process, and assisted and encouraged to carry out research into disability issues themselves. These ideas are not new; participatory/emancipatory research is an approach which has been advocated by people who work in underdeveloped countries and those who work with them. ChambersI6 refers to it as ‘a new
paradigm’, ‘a coherent and mutually supportive pattern of concepts, values, methods and actions amenable to wide application’. Morris6 believes that ‘If disability research is to be emancipatory research then it must be part of disabled people’s struggle to take over ownership of the definition of oppression . . .’. She believes that able-bodied researchers should be the allies of disabled people, that they should ask ‘where are the disabled researchers and academics?’, and that they should challenge discrimination and ensure that the research they conduct empowers disabled people. Zarb7 draws a distinction between ‘participatory research’ and ‘emancipatory research’, believing that research cannot be emancipatory unless it is empowering, but that empowerment cannot be given but rather must be taken. He believes that participatory research is a prerequisite to emancipatory research but is not the same thing. Partnership with disabled people and their organizations is only a first step. He states: Participatory research which involves disabled people in a meaningful way is perhaps a prerequisite 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 points out that neither researchers nor disabled people generally have much control over research funding (although guidelines can be devised to help decide which bodies to seek funding from) but that they can go some way to changing the social relations of research production, by changing their practice in ways which are relevant to the lives of disabled people. He believes that research can be categorized with regard to how far it is ‘participatory’ or ‘emancipatory’ by asking questions such as the following.
Participatory research 1. Who controls what the research is about and how it is done? 2. How far are disabled people involved in the research process? 3. Can disabled people influence future directions, and are there pathways by which disabled people can be critical of the research? Emancipatory research 1. How alienating is the research practice for researchers and disabled people participating in it? 185
S. French
2. What opportunities does the research create for selfreflection and mutual sharing of experience and understanding between researchers and disabled people? 3. What happens to the products of research? 4. Does the research have the potential to empower disabled people?
Disabil Rehabil Downloaded from informahealthcare.com by York University Libraries on 12/28/14 For personal use only.
4. Conclusion
Ways must be found of encouraging and enabling disabled people to carry out research into their own situation, and for research practice to be adapted to ensure their full participation. James and Pullen,’s a hearing and a deaf researcher, point out that ‘In the past deaf people have been denied the opportunity of making their opinions known because research has used written or spoken language. Our study has demonstrated the value of using interviewing techniques suited to the deaf person rather than the interviewer.’ Oliver,19talking of disability research, states: The late twentieth century has seen a crisis of these productions of disability because disabled people have penetrated the medical and individual ideologies underpinning them. What’s more, having done so, they are now engaged in a struggle to produce disability as social oppression. As this struggle continues and disabled people grow in strength, the crisis in disability production will deepen and researchers will be forced to ask the question Howard Becker asked thirty years ago: Whose side are you on? Disabled people are now being empowered by the disability movement; the question is, can research become part of that empowerment?
1988. 3 Oliver M. The Politics of Disablement. London: Macmillan, 1990. 4 Abberley P. Handicapped by numbers: a critique of the OPCS
5
6
7
8
9
10 11 12
13
14 15
16
17
References 1 OPCS Disability Survey of Disability in Great Britain. Report 1:
18
The prevalence of disability among adults. Office of Population Censuses and Surveys. London: Her Majesty’s Stationery Office, 1988. 2 OPCS Disability Survey of Disability in Great Britain. Report 2: The prevalence of disability among children. Office of Population Censuses and Surveys. London: Her Majesty’s Stationery Office,
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