In this article I will explore the implications to reflexivity in disability research. Feminisms have challenged positivistic research models by attributing epistemic weight to standpoint. This work has been of tremendous importance to disability research, aiding in the paradigmatic shift from research about, to research by and for, disabled people. 1 Disability studies calls for at least a reflexive (if not a disabled) researcher, one who considers how perspective and privilege affect knowledge. Since reflexivity has gained currency within feminist contexts, scholars have cautioned against too much of it in research, arguing that the call for reflexivity is often framed with the use of binary identity categories: oppressed or privileged, disabled or nondisabled. When researchers do not position themselves in their work, they may well be positioned anyway. I am interested in how researchers are read when they refuse to self-disclose. I intend to draw from my own personal experience to mount a modest challenge to the use of narrative in disability studies, specifically the pressure to provide one. I would like to do so in an effort to consider relations of power and respect within our communities and work.

Situating Myself

I have a confession to make: I have an eating disorder. EDs come with a checklist of sorts by which I might self-diagnose: at my worst, I measured my food, counted my calories, and burned off meals through hours of daily exercise. I could also check off my cognitive dissonance—feeling fat yet seeing all the vertebrae along my spinal cord, and the spidery veins on the back of my hand. All the requisite physiological markers were there, from the yellowed skin, to the coarse body hair, to the brittle nails—check, check, check. I withdrew socially, and I managed to interrupt puberty for years. I was by all accounts the textbook definition of an anorexic. 2 Even now my relationship with food still involves draconian control, punctuated with binging when I am not thinking, and fasting when stress gets the best of me.

The condition was for a long time not called by name. At first, I was applauded for much needed weight loss, especially when I began to see results. There was a point at which "thin" became "too thin," and it was at this point that praise turned to scorn, to condescension, and to unsolicited advice about seeking help for my problem. The first time I heard the term "eating disorder" came from a physician when I was admitted to the hospital for complications caused by undernourishment. Then, and for years since, I was in what was called recovery, until my protean condition was all but forgotten. Recovery because I no longer felt hunger, could only associate that emptiness in me with pleasure and accomplishment, and so I could only begin eating again if I did so according to a schedule; and, paradoxically, it is this very orderliness that renders my eating disordered. It has been in this way that I have slipped in and out of pathology for the past decade.

More broadly, but connected, I have obsessive-compulsive disorder. I have a preoccupation with schedules and a fondness for charts, so much so that deviations, be they tardiness, changes in plans, or typos, send me reeling. I have difficulties interacting with others, masked by both the academic rigour I apply to developing formulae for social engagement and the privacy I seek out when I have panic attacks preceding phone calls, conversations in transit, strangers in my home, and especially parties. When I see an insect in my building, I spend my night spraying Raid behind every piece of furniture and in every cupboard, to the point where I wonder whether I might die from inhalation of toxic fumes. My imagination is active, and gruesome: I envision a trip and fall every morning I step into the shower, and a car crash every time I get behind the wheel. I dig under nails and into my skin to the point of drawing blood, and I chew the insides of my mouth raw because the pain relieves stress; and I pummel my fists and open palms against my skull when I make mistakes. Chewing gum (on average two packs a day) keeps me from causing too much damage to my body, but this masochism has come to be daily ritual—more pronounced when I need to calm nerves, but mostly reflex now.

Most people just find me quirky, dismissing my frustrations as the idiosyncrasies of an intellectual. Many find me socially adept when I need to be, and when I identify my difficulties, my exhaustion, they dismiss it all, and tell me there is nothing extraordinary about being shy. The surprise over the amount of gum I consume throughout the day passes quickly and my nosebleeds and warped finger nails are taken to be the results of accidents. Those closest to me find me endearing: my mother laughs when I have an insect-induced full-scale meltdown; my friend is pleased when I tidy her home before we can begin studying; my partner rolls his eyes when I insist on sanitizing him between garbage disposal and hand-holding. If I am ever told that I have OCD, or that I am crazy, the statement is always followed with laughter to indicate the label is a jape, all in good fun. The term has become comfortable and colloquial: cleanliness is to OCD as arrogance is to narcissism, and sadness is to depression. We so often do not mean the terms we use, for colloquial nomenclature comes to us as though it has no history, no medical associations (Reaume, 2002).

And I laugh with them. Rarely do I tell people that I am not merely different, but diagnosable.

Why begin with such personal self-disclosure, a gesture that I can assure readers is painful and embarrassing to offer? The story recounted does not come easy for me, and indeed, has been walled up in that proverbial closet throughout my decade-long academic career. I have had to justify why I might belong in a disability studies program to a fellow student, with a methodology class serving as our audience. I have overheard newcomers to the program lament that no one here is disabled after a cursory glance, a wheelchair inventory. I have had nothing to say when colleagues praise my weight loss, complain about their weight gain, and call someone ugly, another fat, yet another beautiful. Perhaps self-identification in all those instances would have proven helpful to those who engaged in erroneous readings, would have furthered and complicated conversations around disability. Still, how much and how often must one share, why do opportunities to share so often present as teachable moments, and what guarantee is there that disclosure results in greater understanding?

Though I have struggled with this starting point, what I have done is familiar, if not banal, for disability research all too often begins with a confession. Through narrative, researchers in this field may indicate the position they take in and on their work. Our narratives tend to be used to situate us, and frame our identities; our narratives entail a sharing of self. And the use of stories as our entry points to research seems to signify our authenticity as disability studies scholars. I mean to reflect upon my discomfort, and a bit of theory, to consider the prominence of narrative in disability studies, and to suggest that we should not so eagerly seek out personal stories to ensure our disability scholars have the proper credentials.

The Value of Perspective 3

Narrative can function as a tool for revealing standpoint. Standpoint theory was developed within feminist discourses for the purpose of disrupting traditional research approaches, for it shifted epistemic value by supposing that there is no objective standard in research, only the standard accorded privilege. Harding (1995) describes the sorts of knowledge that have historically been apoliticized and therefore privileged as Truth:

The institutionalized, normalized politics of male supremacy, class exploitation, racism and Eurocentrism…depoliticize Western scientific institutions and practices, thereby shaping our images of the natural and social worlds and legitimating past and future exploitative public policies (p. 336).

Standpoint theory serves to counter the Archimedean point taken by the positivistic observer—the supposedly impartial vantage point from which a researcher might observe an object of inquiry. By granting that there are other vantage points in research, indeed by holding that the neutral vantage point was an illusion all along, we legitimize voices once overlooked, ignored, and even silenced.

Early proponents Harding (1986), Hartsock (2004), Huncileby (1998), and Jagger (1983) found their roots in Marxist materialism (a theory for the oppressed) and empiricism (a counter to setting rationalism as the standard). The theory was originally, and largely remains, a feminist device, gaining traction in the 1970s and 1980s by identifying not just the strikingly different material realities between oppressed women and privileged men, but also women's material realities and men's academic interpretations of those realities. Benston (1969), Dalla Costa (1972), Morton (1970), and most notably Smith (1974a, 1974b, 1978, 1989, 1995) focused on women's work, specifically domestic labour, as an entry point for experiential knowledge-building. The privileging of marginalized knowledge has the epistemic advantage of shedding light on problematic relations of power in the everyday world.

When marginalized groups are not regarded as authorities over their own experience, they encounter what Smith has called bifurcated consciousness, divided as they are between material reality and dominant normative interpretations. Says Smith: "a bifurcated consciousness is an effect of the actual social relations in which we participate as part of a daily work life. Entry as subject into the social relations of an objectified consciousness is itself an organization of actual everyday practices" (1995, p. 28). Paying heed to standpoint interrupts those standards deemed objective by forcing their confrontation with lived experiences.

Though a feminist tool, standpoint theory need not merely be used in the service of women, and as Smith (1989) would contend, does not seek to characterize a unified reality for all women. Collins (2004), among others (hooks, 2007; Minh-ha, 1997; Walker, 1995), writes on the standpoint of women of color: "Black feminist thought consists of ideas produced by Black women and clarify a standpoint of and for black women" (Collins, 2004, p. 105). Elliot (1991), Linton (1998), Michalko (1999), and Titchkosky (2007) each consider how the experiences of disabled persons also disrupt dominant discourses. Linton (1998), for example, claims that disability studies should be incorporated into educational curricula: "scholars of all stripes must recognize their moral and intellectual obligation to evaluate the gaps and faults in the knowledge base they disseminate to students that result from the missing voices of disabled people" (p. 142). In the same vein as Collins, recent disability scholars have mirrored the popular slogan for disability rights activism, "Nothing About Us Without Us," which is grounded in "(disability) oppression and…simultaneous opposition to such oppression in the context of control and voice" (Charlton, 1998, p. 3). We are the authorities of our own experience, and our experience has the power, at least by virtue of starkness of contrast, to disrupt normative accounts of disability.

As an example, only recently have historians begun to explore the history of madness through the perspective of those persons diagnosed with mental illness. Until the work of Dwyer (1987), Geller and Harris (1994), Ingram (1997), Peterson (1982), and Reaume (2000, 2004, 2006), this history has been depicted through the lens of physicians and psychiatrists. This is not to say that scholars have not spoken out against institutionalization; indeed, many notable intellectuals have, including Foucault (2005), Goffman (1961), and Scull (1984). Nonetheless, beginning with the perspective of those institutionalized provides a new, very authentic insight into the problematic of their everyday affairs. Reaume explains:

This [research] is an effort to understand [patients 4 ] as people first rather than as a diagnostic label. In so doing, this book…is intended to be a contribution to the history of mental institutions and their occupants by giving voice to those people who have been considered 'silent' (2000, p. 3).

Reaume not only investigates the perspectives of people who have been institutionalized, but also himself identifies as a person who has experienced institutionalization. This perspective enables him to be reflexive and to thus ensure that his research is not simply about, but is also by and for, disabled people.

We might extrapolate, then, that positionality functions as a sufficient condition for reflexive research. Reflexivity is a sociological concept attributed to Giddens (1991) and Habermas (1985), referring to an individual's identity being shaped by social structures. Giddens explains that self-identity is a reflexive project, or as Gauntlett interprets, "an endeavour that we continuously work and reflect on" (2002, p. 99). In Giddens's (1991) own words:

A person's identity is not to be found in behaviour, nor—important though it is—in the reactions of others, but in the capacity to keep a particular narrative going. The individual's biography, if she is to maintain regular interaction with others in the day-to-day world, cannot be wholly fictive. It must continually integrate events which occur in the external world, and sort them into the ongoing 'story' about the self (p. 54).

Reflexivity has come to be a tool used in feminist methodologies (Eisenberg, 1995; Reinharz, 1983, 2010). Defining the term broadly as "the careful monitoring of one's own subjectivity" (1993, p. 25), Wasserfall distinguishes between strong and weak versions of the concept. Strong reflexivity "contains certain assumptions or the deconstruction of the authority of the author and/or of the power difference in the field" (p. 25); she and others (Klein, 1983; Marcus & Fisher, 1986; Stanley & Wise, 1990) criticize this definition for overlooking the theoretical and political tensions built into knowledge production. A weak, or qualified, account of the concept is explained in the following way:

What may be called the 'weak' reading of reflexivity is a continued self-awareness about the ongoing relationship between a researcher and informants, which is certainly epistemologically useful: the researcher becomes more aware of constructing knowledge and of the influences of her beliefs, backgrounds and feelings in the process of researching. Reflexivity is a position of a certain kind of praxis where there is a continuous checking on the accomplishment of understanding (Wasserfall, 1993, pp. 24-25).

In other words, a reflexive researcher is aware of what she is bringing to the research, and how findings are affecting her own perceptions. She engages in the ongoing process of situating herself and acknowledging, even making use of, her own filters. She must be open to negotiation, for "defining a research role for oneself is not entirely in one's hands" (Reinharz, 2010, p. 33). All this is done in order to build a more careful representation of reality—one that is not assumed to be objective, positivistic Truth. The approach does not require that one, for example, identify as disabled while conducting research on disability; it only requires that there is some work being done to reflect on how the research is affecting oneself, and vice versa. Reflecting on perspective and privilege might better ensure that researchers are aware of and accounting for the power differentials between researcher and researched, and are thus avoiding normative interpretations of research findings.

Critique

The picture so far seems rosy. I nevertheless contend that we have another bifurcation on our hands, another cleaving of theory and reality. Despite reflexivity becoming the "New Orthodoxy" within feminist circles (Patai, 1991), Wasserfall (1993) and Watson (1987) argue that the meaning of reflexivity remains unclear, and is subject to disagreement and debate. Robertson (2000) discusses the implications to too much reflexivity in research. She recalls a reviewer of her second book asking her why she does not identify as an "academic, white, Westerner, woman" (p. 789) when she studies poor, racialized cultures. She writes in response:

These generic, fixed categories effectively efface the complexity of my personal and professional lives. By that same token, the reviewer also assumed that the people I was working and socializing with and I were mirror images (that is, opposites) of each other, and that our relationship could only have been defined by unequal power plays (p. 789).

The reviewer's allegation that Robertson's research was not reflexive is underscored by these fixed categories. And yet, Robertson understands her own position within her research, and indicates that she has reflected on how her narrative is built in relation to research subjects. She claims that there were identity slippages as she engaged the participants of her study throughout the decade she worked on the ethnography that this reviewer criticized. These slippages indicate that identities are not static, "ready to wear" (p. 788) packages, but they blend and bleed.

Positionality, then, errs in presupposing these stale, supposedly definitive identity markers that might be used to sort persons. Robertson's example and analysis relate more readily to colonialism than ableism, a common "—ism" in her field of anthropology after all, for she has this to say about postionality and stereotyping:

[Positionality] retains an asymmetrical relationship between 'the West' and 'the Third World.' Although neither 'the West' nor 'the Third World' exists as an internally coherent entity, there is a tendency to treat both as singular and homogeneous formations defined in terms of their experience of colonialism and imperialism (p. 789).

We might glean from this passage what the implications would be for disability theory, by replacing "the West" with "the Nondisabled" and "the Third World" with "the Disabled." The analogy applies well given that people can slip in and out of the disability category throughout their lives, and the category covers such a vast, heterogeneous range of bodies, mental states, and experiences.

Garland-Thomson (1992) contends that the presentation of standpoint has furthered disability theory: "standpoint theory and the feminist practice of explicitly situating oneself when speaking thus allow for complicating inflections such as disability…to enter into our considerations of identity and subjectivity" (p. 24). She is not alone in supposing reflexive research proves useful in grounding our claims, in challenging traditional research practices that may be accused of encountering crises of representation (Cameron & Swain, 1999; Denzin & Lincoln, 1994). Nevertheless, Brueggemann (1996) claims our new paradigms only perpetuate these crises by turning the focus back on the self:

I would suggest that such self-reflexivity, turning as it does on issues of representation, risks turning representation into a solipsistic, rhetorical position in which the researcher (the self)—as, once again—usurps the position of the subject (the other). For in being self-reflexive, we turn the lens back on ourselves, put ourselves at the center of representation (p. 19).

In other words, reflexivity continues to do a disservice to those who ought to be the center of disability research, continues to displace and draw attention away from them. Research is not about them, but about the researcher's reading of them.

Disability is often assumed to be a feature that can be read on the body. This can be done because, as Weiss (2003) describes, the body is "a narrative horizon for all texts" (p. 25). Embodiments situate our narratives, and as such may be inscribed upon, read and misread. Derrida (1992) calls this misreading doing violence to the Other, the Other being that which exceeds the oppressive boundaries of definitions. The Other will always have something to offer that swims beneath, bleeds through, and transcends beyond the definitions we impose upon her. To demand that "one give an account of everything, and only thematically" (Derrida, 1992, p. 25) is to shut down the possibility for alterity and singularity, to control through classification. Weiss is exploring this Derridean concept in reference to disability, for the body as text proves especially difficult for those bodies that are read as different, even defective. We do violence to the Other by reading her; by demanding her thematic, explanatory account; by forcing her narrative then using it as a sorting tool.

Consider staring as one way of reading the body, of doing violence to the Other. According to Garland-Thomson: "staring has an inherent narrative component that the staree must always address in some way" (2006, p. 180). The stare elicits a response, that is, prompts an explanation for being different. People who are disabled in easily identifiable ways—those who walk with an uneven gait, those whose palates are cleft, those whose limbs have been amputated—may deal with gawking in the street, hushed whispers, and invasive questions. Even when disability is not obvious at first glance, assistive devices, ranging from wheelchairs to seeing-eye dogs to voice recognition software, inscribe disability on the body, for they flag what is "wrong" with a person. They call for explanation, even justification lest someone be read as attempting a free pass. The less visible the disability is, the harder it becomes to justify flexible deadlines and handicap parking.

Garland-Thomson (1997) differentiates between the gaze to which women are subjected when regarded "favourably" and the stare that people experience when alterity may be read on their bodies, though she argues that both stem from an overarching social mandate to normalize bodies, to force bodies into binaries: "feminization prompts the gaze, while disability prompts the stare. Feminization alterations increase a woman's cultural capital, while disabilities reduce it" (p. 287).

These varied readings complicate the problematics of identifying as disabled. As Brueggemann and co-authors (2001) note, because disability is not always immediately visible, disabled persons engage in practices of passing: "many of us 'pass' for able-bodied—we appear before you unclearly marked, fuzzily apparent, our disabilities not hanging out all over the place" (p. 369). Samuels (2003) claims that the process of coming out, of putting an end to passing, especially in the case of invisible disabilities, is not a "static and singular event [nor] an over-the-rainbow shift that divides one's life before and after the event" (p. 237). Though the act has the potential to signify identification with a community and a particular political alignment, it also (or perhaps instead) often consists in the defense of accommodation needs (Gage, 1999; Montgomery, 2001; Siebers, 2004; Wendell, 1996).

Kleege (1999) and Montgomery (2001) remark especially that the sorts of stigmas attached to invisible disabilities differ from those associated with more readily visible disabilities, the former scholar arguing that it is simply easier not to self-identify so as to avoid suspicions of fraud, the latter demonstrating that so-called invisible disabilities are not impossible to perceive but invisibalized by the failure to recognize barriers. Titchkosky (2003), who identifies as learning disabled, discusses the need to render the invisible visible in the context of the supposed free pass:

Some of my colleagues say that 'learning disabilities' are just the latest way that students have to excuse themselves from work, and that 'dyslexia' is just a sophisticated word for lazy. It is important in the face of the general suspicion of those with 'invisible disabilities' to make disability visible…make different ways of learning acceptable, and offer a counterpoint to cultural renderings of invisible disabilities as simply a synonym for sloth (p. 36).

Like Titchkosky, Clark (2007) is an academic who writes on her identity as invisibly disabled, and the difficulties around self-identification and accommodation requests. She reveals her own disquiet over sharing her experiences of depression within academic contexts: "it seems to me…that no one thinks much about the subtle and not-so-subtle exclusions of mental illness from the academy, even while disability advocates are becoming increasingly vocal and politicized" (p. 128). She goes on:

When we identify ourselves, there is discomfort. If we were to request concessions (extra assistance with marking, for instance, or extra time to write papers) similar to those our disabled students apply for (Braille, note-takers, extra time to write exams), the reaction would undoubtedly be hostile, with the unspoken question, 'what are you doing in this job, then, if you can't cut it like the rest of us?' (p. 128).

Perhaps Titchkosky is correct in claiming that reflecting upon our narratives is an important way in which we render the invisible visible, one way in which we call attention to the ignored, but as Clark illustrates, the push-back is not easy to navigate. Perhaps it is an advantage not to be subject to the stare Garland-Thomson describes, that stare that other members of the community of disabled persons may experience, but even those who are more subtly disabled still encounter expectations of normalcy and must manage their bodies accordingly. Even they find interpretations of their narratives get away from them, such that self-identification loses that sense of political liberation and transformative potential it is heralded to possess.

In Defense of the Closeted 5

I have found that even when pathology is eclipsed, when it is between the lines of text, I have yet to escape the panoptic eye. Fifty or so pounds ago, people took notice of my body, for all its frailty, its jutting bones and sallow coloring. "What happened to you?" they would ask. "What have you eaten today?"; "How much do you weigh?"; "What are you doing to yourself?" These days, people do not stare, but some gaze. Some might say that this is a step in the right direction, to be treated as a woman rather than an anorexic. The gaze, though, I have found, is accompanied by its own set of complications: harassment in the workplace, assaults at nightclubs, and the expected sort of payment for "free lunches." There was once a time when people regarded me with disgust, when they could not imagine me as sexually desirable; now that I have what seems to be a different body entirely, I have long since evaded the stare, but have come to be alienated—even traumatized by—the gaze, so much so that I struggle to discern the difference when both can be so oppressive.

But these are merely the implications to approximating the normative standard. My situation is complicated by my secret aberrations—tiny hints that could be read on the body but are hidden away. When I stop eating during stressful times and my ribs press against my flesh, they are buried under layers of clothing. When a part of the nail to my index finger is cut down to the cuticle because that is a favourite place to dig into, the exposed flesh a favourite site to stimulate, my hands remain clasped in my lap while I am conversing with others.

I play the part of the pseudo-normate because my frustrations, as long as they are manageable and hidden away, are mixed in with my privileges. Mine is not an overcoming story, not only because I have clearly moved past nothing, am still very much in and under disability, but also because my successes are entangled in my disordered eating and my obsessive habits. I am thin enough, a socially desirable trait for embodiments these days; and vegan, which earns admiration. OCD has aided me tremendously in my schooling, and has enabled me to juggle extracurricular projects. Sometimes I fancy myself a Faust, a magician whose skill is not my own, or at least, is the work of forces that folk might fear or find distasteful. When pathologized, disability is so often associated with incompetence, inadequacy, and ugliness whereas I am only competent, successful, and maybe even pretty because of the daimons driving me. I could expose myself, I could work at overturning misconceptions about disability by sharing my experience, but doing so requires sustained, repeated effort, and is difficult every time.

Indeed, all those times I have been outed, there is rarely a revelatory moment where the listener sees the way in which my experience challenges normative standards. Instead I receive condolences and concern and advice, as though my strengths and weaknesses can be separated out, as though they are not one and the same. Even within communities that advocate for disability rights or further disability scholarship, it is not always okay to be fat, or to worry about being fat, or to worry to the point of being hospitalized. It would seem that for all our theory work accomplished in feminism and disability studies, I am still not an authority over my own experience, even and especially when that experience is laid bare.

Conclusion

Am I a coward for remaining silent for so long, doing a disservice to people who have had to, or have chosen to, come forward with their own narratives? Is this lament no better than a bout of "white whining," where I complain that I am misread as privileged, though the reading is not so wrong, since I have it so easy? Have I all along been missing out on the crucial work of community-building because I have identified (or remained silent when identified) as an outsider and ally only?

Disability scholarship seeks to challenge our ideologies and change our contexts, although there is still much work to be done. By engaging feminist methodologies, by approaching research with a reflexive attitude, we seek to challenge the illusive neutral standard in traditional research. Indeed, like Brueggemann (1996) and Clark (2007), I am caught up in a contradiction, exploring my own position to fetter out the limits to positionality, taking up the defense of other entry points into research all the while using the common point of entry. It is not my intention to argue that we need to do away with our methodologies, for even I find them valuable. My purpose has instead been to illustrate that there are complications to coming out, that at least my coming out comes with baggage, and that not all moments of coming out lead to a community embrace. Within the span of this paper, I meant not merely to self-identify, but to express the discomfort that accompanies my self-identification, so that I might further the discourses around the call to disclose.

I remain unconvinced that we have enough safe spaces, even and especially in our own field, for all of our stories. Until that day comes, I would like to think it is possible for a researcher to practice reflexivity without publicly taking a position, to conduct responsible research all the while working quietly. I would like to think that while narratives and standpoints have their use, they are not our only approach, and they should not be required.