She knows who she is, her reality is her own, but she is handicapped by her lack of voice in the research text. The question we need to ask ourselves before starting a research project is: are we representing the realities of the people we are researching, or are we appropriating the voices of others and creating new stories? We once believed that positivist methods allowed us to document an objective reality. Feminist critiques of the masculinist bias of positivism led to a rejection of quantitative methods throughout the 1980s and 1990s. Subsequent debate has highlighted the potential such methods offer in terms of allowing a wider range of research questions to be posed, ensuring women are involved in the construction of positivist knowledges, and providing statistical data (Dupuis & Neale 1998, Oakley 2000). Nonetheless, some of the loudest critics of positivism have been those who identified and experienced a dissonance between the positivist objective reality and their own lived reality, those who could not identify themselves in the research text (Fawcett, Featherstone, Fook & Rossiter 2000, Lunn 1997). Feminists and disability theorists argue that many research reports tell stories that are difficult for the research participants to recognize and that the diverse realities of the research participants are not represented (Stanley & Wise 1983, Barnes & Mercer 1997, Oliver 1999). Not only are they invisible from the research text, but they may have little involvement in determining how research processes are to be constructed (Munford & Sanders 2000).
Our intention in writing this article is to add to the growing body of literature aimed at promoting more representative ways of carrying out qualitative research and producing results that are of use to the participants (Haney 2002). We explore some of the philosophical and theoretical underpinnings of research in the disability field. The challenges that have been directed at researchers in this field have opened up new possibilities for carrying out research and have added another lens to social science enquiry. Consideration of issues of identity, power and the ownership of knowledge by researchers has led to critical reflection about research partnerships, participation and the purposes of research (Munford & Sanders 1999). Reason and Bradbury (2001:6) suggest that a participatory worldview is emerging:
The emergent worldview has been described as systematic, holistic, relational, feminine, experimental, but its defining feature is that it is participatory: our world does not consist of separate things but of relationships which we co-author.
Links between research relationships and participation, such as those described by Reason and Bradbury above, are particularly salient to disability research. Participation with its connotations of individual agency and independence is a fraught issue for people who require assistance in their everyday lives. They enable us to question exclusionary practices such as those based upon “deficit models of research”, which view inarticulate respondents in terms of their individual deficiencies rather than as a limitation of the method (Booth & Booth 1998).
Yeatman (2000:189) writing on disability-led insights into participation suggests “ … that no-one can participate in the conduct of their life except as they are invited by relevant others to participate”. To become an effective individual means that one is invited to be his or her own person (Yeatman 2000:189). The invitation to explore, analyse and express who he or she is and what he or she wants inherent in the principles of participative projects make this method particularly appropriate to disability research.
A study entitled, “‘What am I … for her?’: feminism and disability with/in the postmodern”, in which six disabled women and a non-disabled researcher set out to produce an account of life with a disability is used as an exemplar in this article (Lunn 1997). In the “What am I … for her?” study the method drew from feminist, post-modern and participative paradigms and owes a debt to both the legacy of positivism in social science research and the current debate over best practice in research. In asking, “What am I … for her?” the title of the study signifies a participatory worldview which questions the role of the researcher in the co-authoring of the research relationship and the production of particular research outcomes. “What am I … for her?” is a question about the research process, analysis and outcomes, where the central question becomes “does the research story make sense to the participants?”
Feminist Approaches to Research
Feminism has a long history of critique of mainstream or “malestream” scientific methods. It has been argued that feminist perspectives can be divided broadly into three categories: the feminist empiricists, standpoint epistemologists and post-modern feminisms (Harding 1991). The empiricists argue that women have a less biased and therefore more objective view. The standpoint feminists on the other hand critique the subjugation of women's knowledges and women's voices in science. They argue that in developing new epistemologies feminists have challenged the marginalization of certain kinds of knowledge and the privileging of others (Harding 1991). Post-modern feminisms approach the science question from another angle, offering an analysis of the way that power works to constitute particular subjects and knowledges. They suggest that particular discourses and subject positions attract relative amounts of power.
The feminism and science debates culminated in a privileging of women's multiple ways of knowing, critical analyses of quantitative methods, and the validation of qualitative research methods as preferable modes of enquiry (Reinharz 1992, Dupuis & Neale 1998, Alice 2003). Feminist participatory research strategies, designed to reduce the power differential between participant and researcher, evolved within the context of the epistemological debates and have continued to develop. Rigorous analyses of the micropolitics of power in the research relationship resulted in the critique of the ideal of power sharing inherent in participative strategies. Questions such as: In the interview process what happens when we build friendships and rapport? How do we capture the reflexive and analytical voice of the researcher and participant? and: Ultimately are we are actually doing what we seek to do in feminist research, shape the methodological terrain? (Appleby 1997, Cotteril 1992, Lyons & Chipperfield 2000). Power relations in the researcher/participant relationship continue to be an important aspect of participative feminist research projects, we return to this point in the discussion of identity and politics below.
Disabled Women and Research
Power relations, in terms of research outcomes, are topical issues in disability studies. A critique of research on disabled people, suggesting that it is mostly of little use for them, is ongoing. Barnes and Mercer (1997) assert that existing research, particularly that done by non-disabled people, has largely been a source of exploitation rather than liberation. Taking this one step further Oliver (1999) in a chapter entitled “Final accounts and the parasite people” defends his decision to withdraw from disability research on the grounds that disability researchers are parasitic on the bodies of disabled people. It is logical to suggest that feminism with its critical analysis of practices of marginalization and historical focus on liberation might be useful in the quest for more liberatory ways of carrying out research. However, some disabled women have argued that feminism ignores their needs and is fundamentally flawed by ablest biases (Lubelska & Matthews 1997). Matthews and Thompson (1993) suggest that, while the exclusion of disabled women from feminism is not a conscious decision, this exclusion means that the opportunity for exploring commonalities and differences is lost and as a consequence, women continue to be segregated from one another. Wendell (1996) notes with concern the absence of a disability perspective from much feminist debate. This separation of disabled and non-disabled women is evident in the research relationship. Morris (1995:264) suggests that:
This is because the researcher/theorist has not grounded herself as a non-disabled person holding certain cultural assumptions about disability; because the understanding and theorising have not been treated as taking place in the context of an unequal relationship between non-disabled people and disabled people; and because the “act of knowing”, which in this case is predicated on the social meaning of disability, has not been examined as the crucial determiner of “what is known”.
However, it is not only the unequal power relations between disabled and non-disabled people that are at issue here, disabled women have taken this critique one step further, raising the issue of their disillusionment with the disability movement. They claim that disability organizations do not address issues for disabled women, nor offer an analytical framework conducive to their needs (Hannaford in Hanson 1985, Lloyd 1992). Men and men's issues dominate disability organizations. Additionally, at the forefront of disability thinking are models that have largely been constructed by men (Lloyd 1992). Morris joins in this critique suggesting that “like other political movements, the disability movement both in Britain and throughout the world, has tended to be dominated by men as both theoreticians and holders of important organisational posts”. This gender analysis was supported in the “What am I … for her?” study. Speaking of her long involvement in disability organizations a participant made the following comment:
Jane: […] I have done things that, in my lifetime that, I think that a man with a disability has it easier than a woman. I've seen it happen time and time again. Um, I guess because he's a man he seems to at times be able to access things easier, especially if it's a woman who's doing the assessment … The male kind of thing. You know, “the male” kind of carry on. I guess it bugs me but, and we've all said; a lot of us will say that men with disabilities do have it easier. […] It's crazy.
It has been argued that even the development of new technologies for disabled people are directed towards the needs of men, suggesting that gender also relates to the process of resource allocation (Oliver 1990).
A political movement that directs its energies towards the needs of a particular group of people effectively marginalizes those outside the magic circle of inclusion. Disabled women emerge as a group who do not fare well in traditional feminist politics or within disability organizations. This inequity is reflected in research and research findings despite the fact that disability issues are becoming increasingly recognized. Power issues in the research setting and the related issue of whose voice is represented are issue common to epistemological analysis in both disability studies and feminism.
The “What Am I … For Her?” Study
The “What am I … for her?” study had its inception in an analysis of how research practices affect research outcomes. Questions about how power works in the research process, how we come to know, and what kinds of knowledges and identities are invested with authority, end in tangible outcomes. From such a perspective questioning a central role is accorded to the problem of who the research benefits. However, research practice is complex and does not involve a simple equation of who benefits and who is exploited. Who is represented by the research and how they are included in the research process is an important focus in identifying who can benefit from the research.
The method described in this article is one example of how the analysis of power and politics of research can influence research practice. The particular method used in the study in question needed to be responsive to issues of power in both the research process and the researcher/participant relationship. In this research the question of authorship, was particularly important in the application of the method. The method was grounded in a questioning of the division between the author/authority of a study, and the contribution of the research participants. This meant beginning the research with questions such as: Who owns the research? From whose perspective are questions derived? Is it actually telling stories about the people who are being asked the questions? Do those people recognize themselves and their own experiences in the stories? Destabilizing the power and control of the researcher also problematises the modernist notion of the neutral and unbiased researcher, suggesting that relations of power are involved in the objectification of research participants. The method was designed to acknowledge relations of power in the research process while simultaneously meditating those relations of power.
In order to achieve the aim of involving the participants more fully in the research process a multi-layered method was used. The method involved repeat interviews, in which the theoretical material and methodological processes of the study were shared with, and critiqued by, the participants. This member checking process, in which researcher and researched work together, contributes to confidence in the reliability of qualitative research findings and is an important part of the feminist argument for decreasing power differences between the researcher and the researched (Oakley 2000).
The research method was divided into two stages, beginning with life history interviews. In the life history component of the research the participants were encouraged to speak about their lives and to raise issues they considered to be important in terms of being a woman and having a disability. This was followed by in-depth interviews with all of the participants. The in-depth interviews included a discussion of the researcher's analysis of the life history research data. These discussions centred on themes, strongly stated single issues and a theoretical analysis of the issues that had surfaced in the life history interviews. Participants evaluated themes, added new material, and commented on and critiqued the researcher's analyses. Such engagements offer more open processes of negotiating alternative/transgressive, sometimes, conflictual, readings of materials produced in the engagement between researcher and researched (Armstrong & Plessis 1998). Given that a key goal of the research was to involve the participants as fully as possible, a number of avenues were pursued to achieve this goal. The participants were given many opportunities to provide feedback; these included: casual discussions, telephone calls, discussions over lunch, chance meetings in the street and informal meetings. They were also given opportunities to take a break from the research and to withdraw from contact with the researcher if they felt that the research was taking up too much of their time. The researcher also found opportunities to support the participants in activities outside the research. This was part of the giving back and reciprocity that should be an integral part of these kinds of research projects (Munford & Sanders 1999). These opportunities included: assistance with university assignments and accompanying participants to conferences and meetings in other cities.
Moral and ethical concerns about appropriation of the voice of the participants informed this study. The participants and the researcher worked together in the co-construction of the text and the participants’ ideas and analyses are quoted in the research findings. The concern to represent the voice of the participants was underpinned by post-modern analyses of the subject as an autonomous and knowing entity and the deconstruction of the certainties upon which the modernist doctrine of objective research is based. What we were seeking and continue to seek are research methods and practices that contribute towards outcomes in which “she can find herself”.1
Identity Politics or Identity and Politics
The preceding analysis demonstrates that in the politics of carrying out research into “who we are” is important. Identity is clearly a factor that needs to be taken into account in research practice. For disabled people popular stereotypes that marginalize disabled identities continue to be problematic. In the “What am I … for her?” study the participants suggested that non-disabled responses to, and assumptions about disability, often begin with inaccurate assumptions about disabled identities. Henrietta stated that people think someone with a severe communications disability hasn't “got anything to say on a particular, on any topic at all”, and Kelly commented that when people see someone “in a wheelchair they automatically think that you're dumb, deaf, and stupid”. Feminism and the disability movement each have their foundations in ideas of a shared identity. In both cases identity has been utilized as a founding principle to argue against marginalizing research practices. Despite the ways in which identity functions to mask the diversity of disability, the theoretical perspective forwarded in this study and the analyses of Henrietta and Kelly above, both suggest that it is necessary strategically to claim identity, in order to resist disablist assumptions.
While identity is a useful analytical tool it has its limitations. Using a post-modern feminist analysis of power relations in the research relationship, we briefly analyse those limitations and how identities might be used more productively. Identity is a complex category. Staking a claim on the basis of an oppressed identity has been and continues to be a powerful political strategy. The rise of “New Social Movements” organized around categories such as gender, ethnicity and sexuality since the 1970s demonstrates the power of such strategies. Radical feminism was one such movement. Radical feminists argued that women were oppressed by the mechanics of patriarchy, an institutionalized structure of male domination working to shore up men's superior status. In order to challenge women's inferior status in society, radical feminists sought to change the status quo by inverting existing hierarchies of power and authority. This was a politics based on identity. Personal experience became a basis for making claims, and theory and practice were one and the same (Chester 1981). Women's experiences of oppression became the privileged basis from which to speak and the words of the most oppressed the most privileged place from which to speak. Hierarchies of oppression thrived (Guy, Jones & Simpkin 1990) and those at the top of the hierarchy, those most silenced by the patriarchy, had the most authority accorded to them. Radical feminist logic can end in an epistemology based on an uncritical ontology where who we are becomes what we know.
Taken to its extreme, identity politics leads us back to a situation where there is a singular and privileged way to know. In the case of radical feminism it can be argued that they mirrored patriarchy by uncritically privileging the voice of one group of people. This type of identity politics still marginalizes those outside the magic circle. Where are the women in disability politics? Where is disability in feminist politics? How do we find a way to theorize identity in the research relationship without slipping into an uncritical politics of vilifying an amorphous oppressor?
The history of disability research and disabled people's critiques of the material realities of such research demonstrate that there is a need to question non-disabled people's place in disability research. However, if this critique of research practice slips into an uncritical politics of identity, there is the danger of excluding people with particular kinds of expertise who have the potential to contribute. It excludes, for example, non-disabled researchers’ knowledge of the literature and research practice and their ability to advance understandings within the academic field. Identity politics needs to be considered critically, it is not the only way to make political progress. At the same time, however, ideas around shared identities have proved powerful organizing principles for many marginalized groups in society. The insights gained from their experiences can be used to illuminate future research. Moving towards a more strategic understanding of identity has the potential to inform research practice and outcomes.
As we search for new methods the question that arises in the practice of carrying out research about people with whom we do not have a shared sense of identity is: When we destabilize identity how do we do research without slipping into marginalizing practices? We suggest that there is a need to use research methods that take into account the multiple subject positions of the players in the research process and enable ongoing analysis of the projects from practical and political perspectives. Disabled people should be involved in determining all aspects of the research process, including the questions that are asked, and the uses to which the research findings are put.
The “What am I … for her study” began from the subjective experiences of a group of disabled women and integrated their ideas throughout the study. This was achieved through the preciously described series of negotiated strategies, in which the researcher and the participants analysed and critiqued each other's perspectives and formulated an analysis of the ways in which disability is conceptualized and defined in society. For example, the feminist literature on caring has been critiqued for the fact that it focuses on the experiences of the caregiver in the caring relationship and not the disabled person (Lunn 1997). In the “What am I … for her?” study the carer issue translated into a discussion of privacy issues, while carers themselves were dismissed as a “necessary evil”. In contrast to the path of enquiry suggested in the literature, the participants were not interested in the caring relationship and instead focused on the material effects of having carers involved in daily life. As non-disabled researchers we had not considered the possibility that “the problem with carers”, rather than the “carer-disabled person relationship” would be the primary focus of the participants’ analyses. The re-orienting of our understanding of the caring relationship described above is just one example of the openness required when researching disabled women from the vantage point of a non-disabled person. Such understandings of our own embeddedness in the non-disabled world are an aspect of ongoing critical reflexive research practice that in our experience result in narratives, methods, analyses and theoretical perspectives changing over the course of a project.
Power and the Politics of Carrying out Disability Research
One of the aims of the method was to understand the discursive construction of disability, that is, how power relations work to produce disabled subjects. The analysis of power offered below draws from feminist theory and the work of Michel Foucault.2 Foucault argues that rather than being coercive or dominating, power can be regarded as something that occurs in all human relationships. In his analyses Foucault suggests that power should be understood not as a thing in itself but as a relation. Foucault's analyses are concerned with the relationships of power between human beings, occurring throughout every social field (Foucault 1988).
Relationships of power can be observed as they are played out through identity categories. Identities are imbued with relative social power and this translates into relationships of power in everyday life. Relationships of power serve to privilege some subject positions and marginalize others: men over women, non-disabled people over disabled people. In a research project the identity “researcher” may have more authority accorded to it than that of the participant. However, this is not to suggest that the research relationship is a simple matter of dominance of the researcher over the participant. Foucault (1978) suggests that, where there is power there is always resistance to that power and that liberation is achieved through a plurality of resistances. While Lather (1991a:150) reminds us that, “while anything short of full collaboration cannot avoid some degree of objectification and speaking for others, it can aim towards an introspection objectification balance”. In a research relationship that is not fully collaborative, it is important to make room for the participants to voice challenges to the researchers’ perspective.
Finding methods that do not disadvantage participants by obscuring their voices in research findings involves providing spaces for participants to articulate their own analyses and to resist the dominant discourses structuring our research methods. Henrietta, in the “What am I … for her?” study raised the issue of over-reliance on a small group of disabled people to speak on disability issues and how this falsely homogenizes the experience of disability. Most of the women in the study were high profile in terms of disability politics: the people who are often consulted. The decision to work with high-profile women was motivated by a concern to involve the participants in the analysis of the research findings, but at the same time it is collusion in the homogenization of the experience of disability. The participants’ comment highlighted this issue and can be regarded as an example of resistance.
“What Am I … For Her?” Flexibility and Reflexivity
Participative research provides a space to move away from researcher-directed processes towards more inclusive strategies, such as inviting participants’ comments on proposed theoretical analyses. Such comments may or may not result in changes to the research outputs. The key aspect of working in this participative way, however, is that participants’ responses to the theory are a critical component of the finished work. In the “What am I … for her?” study one of the participants, known by the pseudonym Margaret, declared during a discussion of feminist analyses, “I can tell right now I'm definitely not a feminist”. For this respondent, disability takes precedence over gender. She went on to say, “I don't think you should actually single people out [according to gender] like that … there's heaps of disabilities out there”. Researching participatively, opening up the research to scrutiny by the participants, means that even the parameters of the research may be challenged. In the “What am I … for her study?” the feminist aspect of the research was questioned and the disability focus also came in for critique. Morag wanted to know why we had concentrated on disability in her life history when there was more to her life than being disabled. Jane said: “I don't think of myself as being disabled” and Kelly said:
This is what I say to people, “I'm female, I'm a student, I have a disability, I'm doing a degree, I'm a producer, director, scriptwriter, I've been on a student exchange.”
Margaret's critique of the feminist perspective, and Morag, Jane and Kelly's challenge to the idea of a disabled identity are signals to be reflexive, to rethink the analytical framework. At the same time critical comments of this kind indicate that the methodological principles are working. Lather (1991, 1991a) suggests that if we are to facilitate participation there is a need to provide an environment that invites critical comment. Lather's emphasis on dialogic and reflexive research methods reflects an understanding of the way in which power works in the research relationship. Inviting critical comment from the participants and entering into dialogue destabilizes the authorial voice of the researcher. Dialogue between researcher and participant replaces the singular voice of the researcher. Researcher and participant enter into power-sensitive conversations constructing situated knowledges (Haraway 1988).
In the “What am I … for her?” study the participants had a key role in directing the research process. An example of this is the way that the methods were changed as the research progressed. Feminist participatory methods lend themselves to group interviews and a group interview was initially planned. However, after completing the first part of the study it became clear that the disability community is very small and that privacy is a precious commodity to people who have carers involved in their daily lives. The extent to which a group interview would compromise the participants’ privacy became clear, and the idea of a group interview was abandoned. The importance of privacy in disabled women's lives became a rationale for a change of method.
Researching participatively involves locating our perspectives, stating our biases, discussing our theories, opening up to criticism and critique and working in reflexive ways. Morag, Jane, and Kelly questioned the idea of being defined by a disabled identity while another participant expressed a wish to be asked for opinions on something other than disability, for a change. These comments stimulated discussions on identity in the follow-up interviews. The follow-up interviews revealed major resistance to non-disabled people's conceptualizations of what it means to be disabled. Identity was discussed with reference to Lorde's (1984) analysis of the problems associated with being constantly asked to pick one aspect of oneself and present it as a substitute for the whole person. From these discussions a consensus of opinion developed that disability is not the only issue that disabled people are interested in and wish to speak about. In this case a direct result or outcome of researching in a participative, reflexive, flexible way was a call to approach disability research in a more holistic fashion.
Questioning the role and authority of the researcher can be challenging. Ideas, methods, philosophies, worldviews may change over the course of the research and the review of the literature must be open to scrutiny. In this study, the literature suggested that the critique of the medical model would emerge as an important area for analysis (Oliver3 1990, Morris 1991). While it was important for the women in the study, these women were also able to broaden the analysis and show how they had overcome many of the marginalizing practices of the medical profession. They had challenged medical interpretations of their impairment and had critiqued the role of medical professionals. On the one hand the medicalization of disabled bodies was seen as a political problem, yet on the other, strategies for managing the effects of the medical model were firmly entrenched and had succeeded. Various strategies of resistance to doctors and the medical model were offered. Examples of these strategies ranged from analyses of the disabling physical layout of doctors’ premises to a politically motivated strategy to undermine a particular doctor's power. In the latter case Morag accessed her own medical records under the Privacy Act and kept them at her home. The negative attitude of doctors was a commonly cited example. Kelly spoke of her determination to find a supportive gynaecologist:
I've got a gynecologist who's wonderful … . But I have come across doctors in the early days who said, “oh no You can't do tha-at”. […] You do get doctors who are quite narrow minded and I've had them before … When I was growing up and a teenager, I told my GP I wanted to have a baby and he said, “Ohh … OK”.
For the researcher, as a non-disabled person, the critique of the medical model as a disabling social structure appeared as a potentially powerful analytical construct. However, as the research progressed it became clear that the critique of the medical model promised in the social model of disability can tell only part of the story. Analysing the interviews with the participants in the second set of interviews revealed that for them the mediatization of disabled women's bodies is both an everyday lived reality and something to be resisted on multiple of levels. The final write up of the research therefore required an analysis that moved beyond the social model of disability.
Experiences such as those around the medical model documented above demonstrate the necessity for reflexivity throughout the research process. Practices such as systematized self-reflexivity (Boyles 1993) and a reflective approach, which affirms interconnected ways of knowing the world (Fook 1996) can be utilized to achieve this aim.
Booth and Booth (1998) in their work with children of parents who have learning difficulties suggest that flexible methods are imperative if we are to move away from a “deficit model of research” which views inarticulate respondents in terms of their individual deficiencies rather than as a limitation of the method. Thinking critically about what we are doing, locating our work in a wider social context and calling into question our own ideas and beliefs encourages participation and a focus on new perspectives.
In this study we shifted the focus from a standardized and prescribed research process to the utilization of multiple ways of capturing the ideas and theories of the participants and responding to research findings throughout the research process. We have found that a commitment to reflective research practice in which we are prepared to open up our research practices for scrutiny has contributed to the generation of rich and exciting research findings. The women in this study had experience in being involved in research projects of this kind and were committed to fully participating in the project. However, this process can also work with those who are new to the research experience or who have less time to give to such enterprises. The research process can be adapted to meet the needs of these participants (Boyles 1993).
If we cannot cling to the certainties of the positivist tradition or base our ethics on identity or embodied reality then how do we construct our research practices? As we have suggested in this paper, we encourage researchers to look to the practical outcomes of their research practice. What are we trying to do and what are we actually doing? If even good intentions are in the service of some discursive regime (Yeatman 1994), what are the discourses that the research is supporting and disrupting? Are we disrupting the dominant discourses and replacing them with new voices of resistance and representation? Do research methods that take power relations into account produce outcomes that are relevant and can make a difference in the lives of those being researched? We encourage all researchers to stop and ask these questions before they begin their research journey. As the title of this article says: “She knows who she is! But can she find herself in the analysis?”