Disability Studies Quarterly
Spring 2004, Volume 24, No. 2
<www.dsq-sds.org>
Copyright 2004 by the Society
for Disability Studies


Meeting the Abled? /Disabled? Self When Researching the Lives of Disabled Women

Leslie Broun and Lous Heshusius
York University, Toronto, Canada
fljj@rogers.com, LHeshus@edu.yorku.ca

Abstract: Offered is a reprocessing of the methodological decisions made in a graduate student's (first author) thesis, tracing her slowly evolving journey through qualitative possibilities in methodology, coming to understand that a choice for a particular methodology is actually a choice for a particular other/self relation. At a still deeper level, this process led to the sudden and painful realization that the needs, fears, and desires of the (often conflicting and shifting) self informs the contours of the other/self relation and thus limits what dares to be gained from the research process. This journey played itself out within a focus on the educational and career achievements of disabled women with the first author including herself as a participant. While the inclusion of herself seemed a natural thing to do, it forged in the end a major, painful and unforeseen confrontation between her imagined 'normal' self she had habituated herself to believe in, and her limping disabled self as she appeared to the world (and at a 'realistic' level through the world's eyes also to herself). Questions are raised about the ongoing upset that occurs when a researcher/participant honestly confronts the configuration of the self in the research process.


Introduction

This article offers a reprocessing of the methodological journey of a study conducted by the first author (Broun, 1996), who herself is a disabled woman. Here we reflect on theunanticipated journey that can occur when taking seriously the contemporary epistemological (and therefore methodological) insights that fact and value, "researcher" and "subject", self and other can no longer be neatly separated as was assumed under conventional research frames. More specifically, we reflect on how one's choice of method constitutes an entering into a particular kind of self/other relation, the nature and consequences of which cannot be known beforehand. As this journey towards an appropriate research methodology unfolded, it became clear that one of the most demanding requirements of participatory research for both researcher and participant is the willingness to enter into an unpredictable research relationship that can dramatically affect one's life. Accepting this, it follows that there must be a willingness to be changed by the research engagement in ways that can be neither anticipated nor controlled.

While the original study set out to "find findings," a reflective conduct of the methodological journey problematized the very notion of "findings." It became clear that participatory research constitutes a choice (however much such a choice may play itself out at an unaware level) about the sort of relationship a researcher enters into with the participants, and about the kind of self that is going to be involved, a process that gives rise to certain outcomes and not to others. We use the phrase 'participatory research' as signaling the intimate and intricate levels at which the self (however unaware one may be of this) is involved in the other-self construction, evenwhen we tell ourselves that we are "finding findings." In reprocessing the original study, we use the first person plural (both of us speaking) in this introductory statement and in the final section. First person singular is used (Broun speaking) when discussing the project's methodological journey.

The Methodological Journey

I initially conceptualized the study as an interview project in which I would collect the narratives of eight visibly disabled women (including myself) of different generations to tell the stories of their education and achievements. The theoretical intent of the study constituted a weaving together of feminist and disability concerns to point out that the voices of disabled women are rarely included in feminist theorizing,

At the time, what was different from most other interview projects was my decision, as a disabled woman, to include myself as a research participant. It seemed a natural, straightforward and common sense decision. As the account of the methodological journey below shows however, this decision resulted in an unanticipated and very difficult confrontation with my "self," an outcome I did not at all welcome.

As the study progressed in these unanticipated ways, the focus of the research question was maintained, but the conception of what the results would look like changed considerably. While I did render stories about the education and achievements of a group of disabled women, the journey of the changing research methodology and the final confrontation with my "self" gained in prominence and took on a life of findings of its own, offering shifting insights into the epistemological grounding of participatory research. This illustrates the inadequacy and impossibility of trying to separate "purpose" from "methodology" from "findings" when engaged in participatory research. Such separations are the habits of positivist heritages where believing one can, in fact, do so, is a necessity if the desire for what is seen as objectivity, neutrality and control (implying fact/value, self/method, and knower/known separations) is to be fulfilled (or so one believes).

In this article, we will report exclusively on this methodological journey and self-confrontation, which surfaced strongly as 'findings' in a deep sense of the word: even their contours could in no conceivable manner have been as much as hypothesized at the start of the project.

The Evolution of the Methodological Choices

As the study evolved, I witnessed my conceptualization of methodology evolve from a simple, traditional qualitative approach (gathering data, coding the data, developing categories, etc.) to what I thought of as feminist oral history. This path ofdevelopment was precipitated by many questions and doubts about the relevance of particular methods that initially seemed to lend themselves to my research focus. My goal was to evolve a methodology that elicited and presented data with the integrity and respect that I felt was due my participants and myself.

One of the goals of qualitative research is to strive for a collaborative relationship between the researcher and the participant. However, it usually leaves the researcher in charge of the agenda and of the knowledge that is to be constructed. In my quest for an appropriate methodology, I searched through various approaches to qualitative research, each one seeming more germane than the previous one. The following diagram represents the flow of research methods that I considered:

Qualitative
Feminist Values
Participatory
Emancipatory
Feminist Oral History

The development of this progression was extremely important for me, because I found that the choice of methodology directly influenced my perception and the attitude toward both my research participants and myself. With each step of this development in my choice of methodology, I came increasingly to realize that my attitude toward the research participants simultaneously constituted a particular conception of myself as "the researcher" and the entire interactive research process. This realization led me to the final decision to embrace feminist oral history. Below follows a brief elaboration of each step in this process.

Traditional Qualitative Methodology: Initially, I planned to follow a traditional qualitative interview approach by which I would follow the standard separations of "purpose," "method," and "findings." I planned to gather and analyze the data, develop codes, generate categories, discuss my material and formulate conclusions. However, this basic methodology did not adequately honor the intricate and complex relationship that evolved between myself, as both researcher and participant, and the other participants. The traditional approach to qualitative research continues to separate the roles of "researcher" and "participants" whereas I came to see that they are inextricably intertwined. I wanted to strive for an explicitly reciprocal relationship with my participants.

Feminist Values: As the theoretical intent of the study was to further the inclusion of the experience of women with disabilities in the discourse of feminism, it was a logical step to study the principles of feminist research. One of the basic tenets of feminist research that attracted me was that women's personal and social lives are important both from an individual perspective and as a social category (e.g. Reinharz, 1992, p. 241). Crucial tofeminist research is the exploration of the relationship between the researcher and participant. While in quantitative and, often, still to a large extent, traditional qualitative research, the power in the researcher/participant relationship lies with the researcher (see also Fine, 1994), feminist research stresses collaboration and the mutual construction of knowledge through shared perceptions, experiences and concerns (Oakley, 1981, Reinharz, 1992, Rose, 1994). Strong connections can develop during the course of the study which sometimes last after the study has been completed. The research relationship is characterized by a blurring of the distinction between formal and personal relations. I saw feminist research as a perspective on existing methodology, or a viewpoint that can be used to develop an innovative method that honors feminist principles. This feminist stance became crucial to the development of the research relationship.

Emancipatory Research/Empowerment: The next step in my search for a methodology was an exploration of the principles of participatory/emancipatory research. At the time I relied on Griffin (1992, p. 169) who notes the following principles: (a) it is essential to acknowledge and address power imbalances among different social groups, (b) research is political, (c) research should move beyond description to facilitate social change, (d) research should enlighten and empower the participants to develop a critical understanding of their situation and should provide the means for them to take collective action to gain greater control over the lives, and (e) this action should begin with dialogue and reflection among participants about their personal experiences (p. 169).

Reflecting on these tenets as principles for my own study, I thought: There are power imbalances within feminism in that the voices of disabled women are largely absent from the literature and the formation of feminist philosophy; the research would be political in terms of putting a particular group forward for attention; and, the research might contribute to social change resulting in women with disabilities being included as a category for voice in feminist literature as are women of color, lesbians and poor, uneducated or immigrant women. I felt that this research procedure would, indeed, enlighten and empower my participants and give them (and me) greater insight into our situations.

Speaking as a major voice in the disability rights movement, Oliver (1992, p. 105, 112) contended that emancipatory research is the only appropriate method for the study of disability, as persons with disabilities have come to see research as a violation of their experience and as irrelevant to their needs. Oliver felt that empowerment through self-understanding is a process in which emancipatory research has a role to play. Emancipatory research expects, and even demands, praxis or action through empowerment reached as a result of the research process. In one of her often quoted publications, Lather (1986) similarly emphasized that for researchers with emancipatory aspirations, doing empirical research offers powerful opportunity for praxis to the extent that the research process enables people to be able to change by encouraging self- reflection and a deeper understanding of their particular situations. For emancipation to be possible, says Lather (1986, p. 262), knowledge construction must be premised on a deeprespect for the intellectual and political capacities of the dispossessed. In other words, once the participants are empowered by the research process to have self-knowledge and insight into their human condition, we must trust their capacity to act on these revelations in a socio-political way in order to change and/or improve their social condition.

It was at this point that I began to have somepersonal difficulty with the notion emancipatory research, difficulties that intensified as I came to knowmy research participants. In the first conversation with my first participant, I felt immediate and deep respect and realized that she already understood her particular situation in great depth. I could not imagine empowering her in any way through the research process. On meeting my participants, I could not reconcile a position that entailed "providing the means for them to take collective action to gain greater control of their lives" (Griffin, 1992, p. 169). I respected their intellectual and political capacities from the beginning. These women were by no means dispossessed of self-knowledge, or of political knowledge for that matter, because of their disabilities. I could not place myself in an authoritative or expert location from which I, as researcher, could provide them with the means for self-reflection and empowerment. Recently, others have likewise called into question and explicitly objected to the notion that researchers can set out to "empower" the researched (see e.g. Bishop, 1998, in relation to the advocacy of empowerment research for New Zealand's indigenous peoples).

Thus, it gradually occurred to me that there was a certain arrogance, even smugness, inherent in its underlying philosophy. By the very act of choosing to research a minority group in order to "empower" them, using emancipatory methodology with its philosophical/political intent, essentially one is saying to the group: you need to be told about the social/political oppression that shapes your life (because you don't know). You need to change (and you don't know how).You need to be empowered, you need to be transformed, you need to be emancipated from the fetters of your dispossession—and I can help you. "You need..." - might this not be the most judgmental of statements implying that the researcher has privileged insights into the others' lives (others, whose social status the researcher her/himself typically does not share), implying a lack of insight into the social/political dimensions on the part of the participants about their own lives. Epistemologically and methodologically speaking, it seemed to me one thing for a researcher to discuss with participants the hurdles society and its members and institutions place in their paths, including planning social and political action together, but quite another thing to say or imply, "You don't really understand your position in life, but not to worry, I do, and I can empower you with that knowledge."

In emancipatory research then, the researcher positions her/himself as the catalyst for transformation, the instrument by which the participants become empowered to change. I became wary, however, of a process that expects, even demands, a transformative process of the participants. Also, participants may, or may not, wish to undergo a transformative process. Moreover, in the researcher's expectation of praxis as a result of the research process, there is the danger that the degree of praxis, action or transformation could become the measure of the success of the research. The degree of transformation becomes quantifiable in the sense of change being externalized, materialized and rendered in some way measurable and observable. It would seem that the researcher is put in the position of expecting and demanding change in order to experience success for her/himself. Might it be the implication of emancipatory research that if the researched do not change, then the researcher and the research has failed? And what might that say about the politics of research regarding the use of participants (I invoke the word "use" here deliberately)?

Lather (p. 263, p. 10), for instance, extolled the notion of reciprocity as "an excellent data gathering technique," because "the researcher moves from the status of stranger to friend and thus is able to gather personal knowledge from subjects more easily." This seemed to me an exploitation of friendship for the purpose of gathering deeper, more personal data. This did not seem to be an appropriate or particularly ethical approach to research. Simply put then, what privileged status do I have as researcher to determine who deserves/needs emancipation through my efforts, assuming for the sake of argument only, that I were able to do so? If anything, the participants ended up empowering me by sharing their experiences and insights into their lives.

Having thus passed through the empowerment phase of the journey, I found myself returning to Reinharz' (1992) interpretation of collaborative methodology which affords a research framework that allows a respectful researcher/participant relationship while not diminishing or taking away the voices of the participants. According to Reinharz (1992, p. 181), in feminist collaborative research, the distinction between the researcher and the participants disappears. Information is shared through the approach of openness, reciprocity and mutual disclosure. Participants contribute to and share in the decision-making process with regard to the content, the format and analysis of the data. I decided that my evolving relationship with my participants, the ways in which they shared their thoughts and the ways in which we talked with each other, fit the principles of collaborative research closely.

Feminist Oral History: I then encountered feminist oral history. Rather than explicitly demanding collaboration, feminist oral history implies it. It is premised upon respect for the listener, the writer and the reader. Oral history has traditionally been considered a means of recording folklore, local myth or biography of often older or illiterate persons less able or lessliable to record the substance of their lives in writing. The discovery of this approach was exciting for me, as it would be possible to retain the best of collaborative research methodology and use it in the context of creating feminist oral history with my participants. As Anderson, Armitage, Jack and Wittner (1987, p. 104) also note, feminist oral history is a basic tool that we may use in our efforts to incorporate the previously overlooked lives, activities and feelings of women into our understanding of the past and of the present.

Within the framework of feminist oral history, I became more content to listen to my participants. I was more relaxed. I trusted the process more implicitly. I no longer worried whether my research process would empower the participants or whether we were collaborating. My participants understood the focus of the study and I trusted them to share what they considered to be relevant. Our relationship became more open when I was able to abandon the transformative agenda of emancipatory research.

In my study, I included my own narrative in which I engaged in self-disclosure as a disabled person, just as I also had done in discussions with my participants. Talking about disability as a crucial, yet often stifled and denied aspect of my identity was sometimes difficult, and yet, at other times, exciting, particularly when we discovered commonalities in our experience. Discussing our disabilities was generally not a regular occurrence in our lives, and to do so openly and freely, felt somewhat self-indulgent. One of the older participants commented that participation in this study was the first time in her life that she had ever discussed her disability in any depth. Women's experience of disability is certainly one of society's "hidden" stories, and I must admit here, so it was for me. Feminist oral history provided a respectful and appropriate approach by which these stories could be shared. My intent then was to incorporate the previously overlooked lives of my participants and myself as we reflect much of the narratives of women with disabilities. By speaking for ourselves, I had no doubt that we would challenge traditional feminist assumptions about strength, competence, autonomy and the concept of independence.

The terms of my own role in this process, being the researcher and having a visible physical disability myself, changed the dynamics considerably from the traditional understanding of the relationship between researcher and researched. Identification was obvious and immediate. The significance of this was that, to greater and lesser degrees, I understood many of the physical, as well as social and emotional, challenges experienced by the women. These included surgeries, rehabilitation, fatigue, pain, weakness, exclusion, accommodations, and attitudes towards our bodies, both those of other people and our own.

Being a member of the discourse of disability also allowed me to bypass some of the preliminaries in establishing the research relationships, such as tentativeness toward broaching the topic or establishment of a comfort level that might not have existed with a non-disabled researcher. From the beginning there was a level of comfort in discussing the experience of disability because it was something that we shared. Rather than disclosure, there was an "unfolding" as we each revealed our histories. We were able to indulge in conversation about one of the most important aspects of our lives and we did not need to concern ourselves with the almost subconscious self-directive to adjust our words, stories and thoughts to accommodate the sensitivities of the non-disabled, as is so typically the case. We had all, to varying degrees, been through the same experiences and there was, as one participant described "a common, silent understanding." Areas of discussion which might be embarrassing with a non-disabled researcher could be freely discussed—or so I thought. It didn't quite turn out that way, but I will return to that part of my journey later,

Thus, I believed that being a member of my research discourse enabled me to approach my participants as an insider and receive their stories with an understanding and cognizant ear. One might argue that, because of my identification with my participants, my own personal agenda might influence the work. This is undoubtedly so, but the same holds true for any research as others have also noted.

As researcher, my first concern was with the nature of "talk". I knew that I wanted to avoid the traditional question and answer format and wanted the conversation to evolve naturally while eliciting specific information from the participants. I found that by explaining my goals for the study quite thoroughly before we began, they were immediately ready to talk. By having set out the goals before the tape recorder was turned on, we were able to delve into the subjectmatter with direction and purpose. My participants were all willing to talk about their experience, perhaps feeling thatthey were being given the opportunity to indulge in one of our social taboos: talking about oneself. I felt that it was very important for me, on one hand, to act as "the listening ear" (Ribbens, 1989, p. 586), and on the other, to share my own experience. After the first meetings, I realized that this was a balance unique to each situation. While some participants asked me questions about my experience of polio, others, although polite listeners, were not particularly interested in my story. This was possibly because their disabilities were far more extensive than my own, but they were also familiar with the research process, having beenparticipants in other studies, and were perhaps simply just getting down to business.

It is perhaps somewhat difficult to define my relationships with the participants. I could not say that we became friends, as I define friendship, but we were certainly friendly. Although we shared deeply personal information, it was understood that we were doing so in a professional context, which was separate and removed from the usual discourse of friendship. In my experience, in the development of a friendship, information of this nature probably would not be shared immediately; it would be revealed over time. Therefore, both my participants and I realized the uniqueness of the research situation. I find myself in agreement with Wise (in Ribbens, 1989, p. 585) when she suggests that "real friendship is only possible once the research relationship has stopped." Outside of the research relationship, I would not presume intimacy. Actual friendship would have to follow on its own accord, if it did, through mutually understood patterns of development. This contrasts with the above-mentioned emancipatory approach of using friendship as a means of extracting deeper, more personal data.

In the conceptualization of this study, I had been critical of traditionally conceived notions of disability in scholarship ranging from Goffman's (1963) paternalistic and often offensive tone when describing the "stigmatized" to traditional feminist views as illustrated in a debate in which one feminist academic was quoted as saying: "Why study women with disabilities? They reinforce traditional stereotypes of women being dependent, passive and needy" (in Fine & Asch, 1988, pp. 3-4). It was my intent to show that women with disabilities may indeed be assertive, strong and autonomous. While limitations of the body may have limited the scope of action in our lives, within the parameters of individual ability, the disabled women in this study have been able to attain their own unique configurations of autonomy, strength and independence. I suspect that, had I not been disabled and a participant in this study, I might not have continued to search for a methodology I considered appropriate. Had I not been disabled, I might possibly have remained with a safe and comfortable traditional qualitative approach where my researcher distance could be maintained. But equally possible, I might have been seduced by the power bestowed by emancipatory research as this "population" seemed to so exactly fit the emancipatory mandate.

Meeting the Self

I will now turn to the major methodological surprise that emerged as an important finding. This surprise occurred when all conversations had been transcribed, the narratives had been put together, and the organization of my analytic and interpretive notes to draft a conclusion had been completed. The latter proved to be a much more difficult exercise than I had anticipated for reasons that I could not have foreseen. After two unsuccessful attempts at analysis and after much soul-searching, I began to discern an internal evolution of perspective: I came to realize that I did not want to engage in this task because I did not want to look analytically and interpretively at myself. My initial efforts were, I realized, exercises in avoidance. It was with effort and self-reminders that I wrote "we" instead of "they." Although including myself as a participant had seemed such a natural thing to do at the beginning of the study, I started to see that it had been a methodological strategy—a strategy others had used, and in which it seemed interesting to engage. As I sat down to interpret and comment on our narratives, however, I came to realize that I had thought of my participants as other and had not identified myself with them nearly as deeply as I assumed I had. By continuing to avoid the interpretive task ahead, I did not have to confront the issue of my own disability in all its depth. I did not want to fully confront my identity of being a disabled person, because it would mean admitting to myself that I am part of a group that, while always glaringly visible on an individual basis, is socially invisible as a group. It would force me to understand that because of the configuration of my body I am forever "other," along with my participants and all people with visible physical disabilities. Engagement in this study then had a profound effect on my life, one that I did not anticipate.

I had been attempting to research a group to which I often felt I belonged only as a pretender and it has been with reluctance that I have embraced my co-identity with my participants as a visibly disabled woman. In my own chapter, I explained that I had always pictured myself in my mind as walking without a limp. While I knew that it was not true, it was easier for me to get on with my life when imagining myself as walking normally. I don't know exactly when the change occurred, but it occurred during the research process. And now, in the video in my mind, I would walk with a limp and I couldn't get back my limpless self. I didn't like it. Some might say that my reaction was immature and unrealistic, but I wasn't ready. I wanted to choose the time when I would allow myself to make the switch. I didn't want it to come unbidden. I had anticipated that I would make the shift to my limping self when I was older and felt that it was time to put away self-consciousness and vanity. Actually I had planned that this shift would occur at the time of menopause, having found Greer's (1991) description of the freedom of the invisibility of later middle age quite enticing.

Beauty is important to me. I had always been able to nurture an image of myself as having some degree of beauty, but that did not include the limp. As a result of my deep engagement with my research participants, the limp was there and I was no longer beautiful to myself. I realized that I thought about myself much less because I did not want to have to entertain that picture of myself walking with a limp. Because I became more than ever aware of how I must appear to others, I found that I did not want to go out in public anymore than I had to. I was reluctant to enter new places and new situations and that I needed to steel myself to walk into rooms or buildings where there were strangers, being more than ever aware of people staring at me. This was not the case before I started the study. I had no idea that through the study, I would be forced to see myself in the mirror of reality.

For me, this research has resulted in praxis; however, it has been unwelcome and involuntary. It has, indeed, liberated the 'accuracy' of my appearance in my mind, but I have not yet found this to be emancipating. It helps me to realize that this is part of the evolution of the study and it is part of my own evolution as a person. It is painful to relinquish the comfort of my idealized self, although it is more truthful. Despite my uneasiness with the previously repressed picture of my limping self, I trust that it will eventually find its place in my consciousness and that I will accept it. I hope that I will emerge more at peace with myself at the end of the assimilation process and will no longer have to struggle to keep the image of the false, limpless me at the forefront of my imagination.

In discussing a woman's passage through menopause, Greer comments that a woman may "at last transcend the body that was what other people principally valued her for, and be set free from their expectations and her own capitulation to them" (1991, p. 378). For me, the difficulty was overcoming the desire to capitulate to my perception of those qualities of physical beauty for which I have considered myself to be valued. I know that I have placed much significance on the superficialities of appearance, yet I have also known that this has been important for my survival and success. It has been part of assuaging the anxieties of others, helping them deal with their own anxiety about my aesthetic qualities, i.e. my limp. In our culture, as in most, an attractive appearance contributes to success and desirability. My own perceptions of my appearance, however, created a duality within myself. Who I am is to a great extent determined by my disability. Yet, to be (I thought) who I wanted to be, I negated the disability both in my self-image and my self-perceived public image. I found myself at the crossroads where the two selves, the disabled and the non-disabled, have finally met. For me, without realizing this possibility at the outset, this study actually became "a type of scholarship that begins with an insight about women's condition that requires further elaboration so as to solve the puzzle of one's own life (Reinharz, 1992, p. 127)." It became an exercise through which I might possibly reconcile my actual and idealized selves.

While praxis has occurred for me, my own complex, internal process in reaching this new self-image reinforces for me the notion that praxis and emancipation are intensely personal processes. Emancipatory research may be a perspective for enacting social change, but when that change involves the fabric of a person's being, which it invariably does, transformative processes can't be willed. I can see this form of research as important if the emancipatory goal is focused on the self and issues pertinent to one's own situation. But even that cannot be the goal of research for change/emancipation cannot be forcefully enacted. Moreover, transformative change may or may not be either what was anticipated or what was wanted, as transformation by definition implies a new state or stage of which the characteristics cannot be known beforehand.

As observed by one of my participants, there is a common, silent understanding among persons with disabilities. This understanding allows the sharing of information to flow, but there is also a keen sensitivity as to where to draw the line in asking questions in those areas where we know too much and hide it from ourselves. The non-disabled researcher may ask the hard questions out of ignorance of where the "line" should be drawn. Researchers must be attentive to this moral dimension and are confronted by the dilemma of how deeply they can probe in order to receive "richer" data before this probing becomes voyeurism. That is, before they try to enter realms, for any given participant, that are private to that person.

I was not able to ask the hard questions: The questions that might hurt if asked of me. I now realize that I could not compel myself to ask my other participants, for instance, how they felt when they were excluded or mocked or publicly ridiculed. I could not ask them what it felt like not to be able to have a child because they were disabled. I could not ask what it felt like to be considered unattractive because they were disabled. I could not ask what they thought other people were seeing or thinking when they walked or wheeled into a room. I knew the substance of the answers and how much these questions could hurt so I deliberately did not ask them. I designed the study so that I would not have to, yet was not aware of this. It was not a goal of the study that the private sorrows and humiliations of the participants be shared. The goal of the study was, rather, to focus on strength, independence and achievements valued within a feminist perspective. In fact, some of the participants, on discussing their inclusion in the study, stipulated that they did not wish to discuss intensely personal disability issues.

Often, there can be a validation or confirmation of one's own status of normalcy through witnessing the distress of others. Too many of the writings by and about disabled women are personal accounts of pain andhardship, both physical and emotional. And although they, too, must be told, as a disabled reader with my own particular "baggage," I often find these accounts to be uncomfortable and embarrassing. My participants did not share many of the more unpleasant aspects of their particular disabilities, and as became obvious when trying to write the final chapter, I had not asked about them because I did not want to share these things in my own story or be reminded of them. I had wanted the reader to connect with the participants, not through emotionalism or sympathy, but rather as an interested acquaintance able to identify with the positive and work-a-day aspects of our lives.

Taking on the dual role as researcher and participant then has presented a far greater challenge than I ever would have envisioned at the beginning of the study. While it afforded me the confidence of my participants and insights into their situations, it also caused me to confront intensely difficult personal issues for a prolonged period of time. Continual immersion in a difficult area in one's life can lead to an aversion to confronting the questions inherent in the study. I realized that I had rushed through my earlier efforts at analysis because I simply did not want to have to think about my identity as a person with a disability.

It was, in fact, necessary for my supervisor (the second author of this article) to tell me that she somehow knew there was much more to the narratives than I had written in my first halfhearted attempts. I abandoned the study for approximately two months before I could go back to it with fresh impetus and vision. I needed time for the new images and changes evoked by the research process to be realized and then articulated. Thus, there are strong implications for the researcher/participant to be vigilant as to the nature and limits of the particular dimensions of her/his own life that he/she can actually bear to discover and to know, It is not a role to be assumed lightly.

Implications for Research

When one assumes the task of undertaking research, one is confronted by a myriad of choices—what to study, whom to study, where to study, etc. There is also the question of why does one choose a particular topic? What drove me to pursue the topic of the experience of disabled women when so many other topics were available? Why did I make that choice? Was there some subconscious notion that it was time to reconcile this issue for myself? Did I simply think that I would be wise to write about what I thought I knew? I remember thinking that I would be able to offer a more "accurate" and "insightful" perspective than a non-disabled person could. I also remember thinking that I would, indeed, have a more equal relationship with my participants, that they would trust me more than they would a non-disabled researcher. In making these assumptions, however, I was more bound by the traditional qualitative paradigm than I realized. In my naïveté, it never occurred to me that, in my role of researcher, I would be the one to be transformed and would never have predicted the changes that took place in my integration of conflicting images of self—the dark, secret one and the publicly beautiful.

While it is not within the parameters of this article to examine the origins of the notion of self-image, for the sake of argument I will postulate that it lives both in the conscious realm as well as deep within the subconscious, arising from many forces. It is not something that we deliberately construct at each bidding. Towards the end of my study, I had slowly come to the realization that my self-image had changed: No matter what I did, the image that now presented itself was that of my disabled, limping self. I couldn't shake it, I couldn't get my other normally walking self back, and "I" was gone to be replaced by an ugly usurper. I was angry and sad that I no longer had the option (or luxury) of living in an imagined state of normalcy. Suddenly my house of cards had to be rebuilt and they wouldn't go back to the way they were before. While some might say that I did experience praxis in becoming more realistic and honest about the dichotomy of my self-images, this confrontation and "reconciliation of my selves" still awaited a revelation of its benefits.

Now, six years later, my struggle to find a comfortable, yet 'realistic' self-image continues to evolve. I am finally able to acknowledge my disabled self. In fact, I now use a cane, for as well as the physical benefits it confers, it is a publicly understood symbol that answers many of the questions of the onlooker and lends a measure of dignity, particularly if the cane is elegant (I also acknowledge that the appearance of my public self continues to be important). Growing older, along with using the cane, has relegated me to a particular social category and I am finally able to have the anonymity I have craved; I can now visualize myself walking with a limp and no longer find the image to be so repugnant, although I confess that I still tend to avoid it. Also, I am now less patient with the curious. While I was taught to assume the role of 'patient teacher' when others, including strangers, asked me what was "wrong" with me, I generally no longer share my disability information. This, of course, depends upon my perceptions of the intentionality behind the question -- the innocence of a child's wanting to know vs. the curiosity of a stranger/acquaintance where there may be issues of hierarchy involved and the "validation" of the other's "normalcy". lt is also my perception of the "tone" in which the question is asked, because a question can also be an insult, depending on the way it is posed. I no longer wish to appease the insulter and refuse to try to make others feel comfortable about the issue of difference.

As I reflect on this evolution, I continue to see its roots in the research process—the dramatic confrontation of selves and the relinquishment of my carefully constructed and precious self-image. It has been said that we learn who we are by how we are met in the gaze of others. How frightening and powerful this gaze is in shaping the perceptions and images that we build for ourselves. Perhaps only by ignoring the "gaze" can one reconcile the selves. For me, this has been the journey.

The implication of all this is that when we choose a research topic, it is probably important to us at a deeper level than we are aware of, and in ways we don't and cannot even know. This takes us back to the process of deciding on a research methodology. We need to ask: Why am I doing this? Is there anything in this topic that worries or frightens me? Am I perhaps addressing my own fears? How would I feel in the participant's situation? What if it were me? Why am I choosing this particular methodological approach? How would it be for me if I were to consider other ways of thinking about what it means to do research? What might I understand better about the nature of the relationship I am going to enter into with participants if I seriously think myself through several other methodological alternatives? While answers to these questions cannot be fully known beforehand or afterwards, posing them is likely to facilitate greater sensitivity to the nature of the involvement of the self in the research process.

In my particular situation, while I was a member of the discourse of disability along with my participants, at the subconscious levels of my identity I chose not to acknowledge this. I did not anticipate praxis or change within myself. For the researcher who is not part of the discourse, an equally difficult confrontation with self-knowledge might just as easily have occurred. In my case, had the participants, for instance, had AIDS, or have been amongst the aged, I might have learned things I had never imagined or wanted to know: an unbidden, unwanted and previously unperceived possibility of praxis. A major implication then, is the need for any study to examine closely how the research question, the research processes involved, the construction of the "findings," and the formulation of the conclusions may be driven by our subconscious or previously unconsidered investment in the topic.

On Self and Other, Ethics and Equality in Qualitative Research

We see the unsettling experience Broun went through as illustrating the difficulty of moving from the traditional alienated (and alienating) mode of consciousness to a participatory mode of consciousness toward which qualitative research approaches are slowly moving (Heshusius, 1994, 2004; Bishop, 1998). Broun's struggles with the difficulties in experiencing the knower and the known as one movement and in experiencing the self and the other as mutually constituted illustrate, we believe, one of today's major epistemological stories. In contemporary discussions of the question of how knowledge is made, the mutually constituting process of knowing self through other, and other through self takes center stage. "[T]he self constructs as the Other is invented," says HaIl (in Fine, 1994, p. 72). In contrast, an alienating mode of consciousness (within which positivist thinking arose) gave rise to a concept of self that is separative, distancing, and controlling. This separate self perceives itself to have control over the distance between itself and that which it claims as knowledge. Within traditional forms of research it has been this separative, distancing and controlling concept of self that has been the quintessential self of the researcher.

Toni Morrison (1992), in her book of literary criticism, Playing in the Dark, offers an analogy of how this mutually self-other defining process works within the context of Black-White relations. She traces for the reader how constructing blackness as "other" made "the invention of whiteness" (p.9) possible. She shows how the Hemingways and Edgar Allan Poes could not have written their stories of free, independent, autonomous White males who had power over others and control over their destinies, but for the background existence of the Black slave other. In a similar vein, someone said, when Columbus discovered America, the Native Indian discovered Columbus and all that he stood for. Neither could maintain the same sense of self, no matter how they tried. "Self" and "other" are inherently unstable constructs. We are sure that the reader can think of many other examples of these mutually defining processes. We are saying here that research relationships are not exempted from them, self-other defining processes are involved in the making of any knowledge claim. The self is defined, in an underlying way, by how it defines other.

By explicitly including herself as a research participant then, Broun came to confront the utter consequences of self-other constitutive processes. The processes play themselves out in allresearch, but, as a profession, we have developed myriad ways in which to deny them, methodologize them away, and act as if the researcher is an isolated self that is able to stay separate from the other. Broun encountered what might be seen as the pain of paradigm shifting: She was caught between a traditional, alienating epistemology shaped by Cartesian fact/value, mind/body, and knower/known separations, and a more participatory epistemology that acknowledges the mutually constituted nature of self and other. By including herself in the study while still thinking she could keep herself out of the analysis, her study, we believe, provides a striking example of a researcher caught between these two stories, between the stories of alienating modes of consciousness and participatory modes of consciousness. She was caught between positivist traditions that purport to be able to separate self from other by various methodological dictates, and participatory apprehensions of research where such separations are seen to be denials of relatedness and connectedness,

This is not to say, however, that all qualitative and narrative research acknowledges the self-other mutually constructing processes. As Fine (1994) and Schreurich and Young (1997), for example, discuss, much if not most qualitative research (including in its action research and emancipatory research forms) continues to be predicated on the need, however unconscious, to keep the separation between the self and other intact. Moreover, this separation almost always reflects the perceived superiority of the knower, the researcher. "Domination lingers in these qualitative texts," says Fine (1994).

An insistence on democracy and equality is now characteristic of many qualitative forms of research. The meanings of democracy and equality are explored in epistemological and methodological terms, but few studies are accepting the ultimate questions to be raised. Whose questions and concerns are actually addressed, who is the "self" and who is "other," who discloses to whom, who does the interpreting, who gets to tell the story, what happens to the stories, who benefits from the stories: These and more are the questions that arise once one takes seriously that the knower and the known cannot be separated and that privileged ways of knowing an other do not exist.

To see the construction of knowledge as an expression of an engagement in equality is also to acknowledge its ethical nature. Questions of ethics permeate qualitative research from start to end. In positivist research ethics became a concern after the supposedly objective results had been obtained by execution of what were thought of as neutral methods. The ethical question then becomes what one does with the findings. Within qualitative inquiry, the entire process of research, from formulating the question to the act of publishing is an ethical process, as the other-self relation is itself a living process. In the movement toward a participatory mode of consciousness, research methodology is increasingly seen as a set of beliefs, attitudes, behaviors, and understandings of self-other relationships that act in the world as distinct from a set of methodological practices that act on the world. To borrow Toni Morrison's (1992) words, we wish to enter into that from which, for many reasons, the self has become estranged.

While one of us (Heshusius) has focused on the struggling self within the other-self relation in the context of disability, referring to the supposedly 'able,' 'normal,' 'independent,' and 'competent' self (see particularly Heshusius, 2004) Broun's conflicts with the other-self/disabled-abled relations within her own person moves the focus on the self to an ever more complex level. It shows, we believe, that notions of material reality and desired reality, of external and internal "reality" do not let themselves be so easily separated and defined. Always well aware of the various realities she engaged in, Broun's perceptions were not disordered nor necessarily dysfunctional. Rather, identities are forged by many forces. Contradictory ones exist within one person and over time, private and public ones change places as the need is perceived. It is the nature of that perception that is the most significant: What and who informs it, what experiences shape it, whose social norms and political expectations determine it?

What participatory modes of research also bear as imprints, then, are the tensions and conflicts that emerge when choosing a research mode that acknowledges that the researcher her/himself is involved as a fully fledged human being in the very act of coming to know something. We believe we are still scratching the surface of what it means to move from research traditions that tell us that we have privileged ways by which to separate ourselves, insert research devices between us and whom we study and have methods available that protect the distance thus created, to modes of research that no longer believe these strategies of separation and distancing are possible.

The work described here illuminates some of these tensions and conflicts: entering into the process and then trying to stay away from it, the difficulty of partaking in a process in which one is not in charge, and the pain that can be involved when one sees that there is no more escaping from the acknowledgement that the 'self' and 'other' are intimately entwined. James Baldwin's (1961) words come to mind: "The question which one asks ones self begins, at last, to illuminate the world, and becomes one's key to the experience of others. One can only face in others what one can face in oneself. On this confrontation depends the measure of our wisdom and compassion." (p.13)

As genres are blurring and the dividing lines between the humanities and science, between literature and research, between the personal and the formal are being redrawn with gentler, softer and vaguer strokes than has been the case in the past, Baldwin's words would seem uniquely suited to end the tale told here, a tale that illustrates the complexity of other-self configurations.

References

Anderson, K., S. Armitage, D. Jack, & J. Wittner. Spring, 1987. Beginning where we are:

feminist methodology in oral history. Oral History Review. 103 -127. Baldwin, TJ. 1961. Nobody knows my name. New York: Dell.

Bishop , Russell, 1998. Freeing ourselves from neo-colonial domination in research: A Maori approach to creating knowledge. Qualitative Studies in Education, Vol. 11, No, 2, 199-219.

Bogdan, Robert. & Sarah BikIen. 1992. Qualitative research for education: An introduction totheory and methods. Boston: Allyn and Bacon.

Broun, Leslie. 1996. Inclusion of disabled women's voices: Towards a complete feminism. Unpublished master's thesis, York University, North York, Ontario, Canada

Fine, Michelle. 1994. Working the hyphens: Reinventing self and other in qualitative research. In N.K. Denzin & Y.S. Lincoln (Eds.), Handbook of qualitative research. (361-376). Newbury Park, CA: Sage.

Fine, Michelle. & Adrienne Asch. (Eds.). 1988. Women with disabilities: Essays in psychology, culture, and politics. Philadelphia: Temple University Press.

Greer, Germaine. 1991. The change: women, ageing and the menopause. New York: Fawcett Columbine.

Griffin, P. 1992. From hiding out to coming out: Empowering gay and lesbian educators. In K. Harbeck (Ed.), Coming out of the classroom closet: Gay and lesbian students, teachers and curricula, (167-1 95). Binghamton, N.Y.: Harrington Park Press.

Heshusius, Lous, 1994. Freeing ourselves from objectivity: Managing subjectivity, or turning toward a participatory mode of consciousness? Educational Researcher, 23(3), 15-22.

Heshusius, Lous. 1997. Democratizing educational research: Problems of supervision. Paper presented at the International Conference on Qualitative Research in Education, University of Georgia, Athens, Georgia.

Heshusius, Lous.(2004) . Special education knowledges: The inevitable struggle with the "self." In Gallagher, D. (Ed.). Altemative voices in special education,' What they mean for the past, present, and future of special education. Denver: Love Publishing.

Lather, Patti. 1986. Research as praxis. Harvard Educational Review, 56~ (3), 257-277.

Martindale, K. 1992. Theorizing autobiography and materialist feminist pedagogy. Canadian Journal of Education, 17~ (3), 321-339.

Morrison, Toni, 1992. Playing in the dark: Whiteness and the literary imagination. Cambridge, MA: Harvard Univeristy Press.

Oakley, A. 1981. Interviewing women: a contradiction in terms, In H. Roberts (Ed.), Doing feminist research (30-61). London: Routledge & Kegan Paul.

Oliver, Michael. 1992. Changing the social relations of research production. Disability, Handicap and Society, 7, (2), 101-111.

Reinharz, Shulamit. 1992. Feminist methods in social research, New York: Oxford University Press.

Ribbens, J. 1989. Interviewing—an "unnatural situation"? Women's Studies International Forum, 12, (6), 579-592.

Rose, Hillary. 1994. Love, power and knowledge: Toward a feminist transformation of the sciences. Bloomington, IN: Indiana University Press.

Schreurich, James & Michelle D.Young 1997. Coloring epistemologies: Are our research epistemologies racially biased? Educational Researcher, 26(4), 4-16.






Copyright (c) 2004 Leslie Broun, Lous Heshusius



Beginning with Volume 36, Issue No. 4 (2016), Disability Studies Quarterly is published under a Creative Commons Attribution-NonCommercial-NoDerivatives license unless otherwise indicated. 

Disability Studies Quarterly is published by The Ohio State University Libraries in partnership with the Society for Disability Studies.

If you encounter problems with the site or have comments to offer, including any access difficulty due to incompatibility with adaptive technology, please contact the web manager, Terri Fizer.

ISSN: 2159-8371 (Online); 1041-5718 (Print)