Disability Studies Fieldwork: Does the Nondisabled Researcher Belong?

Jen Rinaldi
PhD Candidate in Critical Disabilities Studies, York University, Toronto, ON

Abstract This article investigates the complications that arise when a researcher who does not identify as having a disability engages in fieldwork pertaining to disability. Disability studies is a discipline that has emerged in part in response to mainstream fieldwork that involves the study of disabled people but has not called for their active participation (e.g. education and psychology). The author presents the epistemological and political implications to their historical exclusion from fieldwork. The author also brings to light the inequalities and power dynamics that a nondisabled researcher might encounter when studying disabled people. Where then, does that leave a supposedly nondisabled researcher? What responsibilities does a researcher have to self-disclose, and at which point does the pressure to self-disclose constitute a violation, inasmuch as disclosure in a context that still stigmatizes disability could lead to loss of control over ones identity and privacy? Keywords Disability, disability studies, fieldwork, self-disclosure, knowledge-production

n this article I investigate the complications that arise when a researcher who does not identify as having a disability engages in fieldwork pertaining to disability. Disability studies is a discipline that has emerged in part in response to mainstream fieldwork that involves the study of disabled people but has not called for their active participation (e.g. education and psychology). I present the epistemological and political implications to their historical exclusion from fieldwork. I also bring to light the inequalities and power dynamics that a nondisabled researcher might encounter when studying disabled people. Where then, I ask, does that leave me as a supposedly nondisabled researcher? What responsibilities does a researcher have to self-disclose, and at which point does the pressure to self-disclose constitute a violation, inasmuch as disclosure in a context that still stigmatizes disability could lead to loss of control over ones identity and privacy? The category of disability itself encompasses people with physical disabilities, including wheelchair users and blind persons; invisible disabilities such as learning disabilities and chemical sensitivities; linguistic minorities like Deaf persons; and disabilities affecting mental state and intelligence. While the category is broad and the disability community has its own problematic internal hierarchies, all these sorts of people are subsumed under the title disabilitya political category defined by the exclusion and disadvantage they all experience. They are united in their experience of oppression, and in their difference, to the extent that they all deviate from the physical and mental states that are socially accepted as species-typical. Disability studies encourages the active participation of disabled people in scholastic research, in large part as a response to current and historical research about disability. According to James I. Charlton, the power of a popular slogan for disability activism nothing about us without us, derives from its location of the source of many types of (disability) oppression and its simultaneous opposition to such oppression in the context of control and voice (1998:3). Disabled people have been systemically excluded from full participation in their communities due to physical barriers and social stigmas, and academia is no exception. Studies have been conducted about disability, and have focused on subjects and populations who have disabilities. However, only recently, with the rise of disability studies, have we

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Playing the Field Conference Proceedings | Social Anthropology | York University 2009 seen disabled people conducting, designing, or taking part in the research, and serving in any other capacity besides as objects of study. There are epistemological implications to the exclusion of disabled persons from studies pertaining to disability. This minority group may have something new to offer that would further research and produce different kinds of knowledge. To develop this argument, I will analyze the implications to the exclusion of women from scientific inquiry, for women and disabled people share (or have shared) common experiences of marginalization from academic pursuits. Margaret Alic presents the history of female scientists in Hypatias Heritage: A History of Women in Science from Antiquity through the Nineteenth Century, arguing that their storiesthat is, their collective contributionshave largely been overlooked: Throughout history women scientists have been ignored, robbed of credit and forgotten (1986:10). For feminist philosopher of science Helen E. Longino (2002), knowledge-productive processes are more social than we may realize, and we produce new and different knowledge claims only by including the voices of all members of our community. In The Fate of Knowledge, she writes, not only must potentially dissenting voices not be discounted; they must be cultivated (132). She argues that scientific inquiry has been stymied insofar as the voices of women have been silenced: their findings have been ignored and they have faced systemic barriers to full participation in scientific inquiry. As a result, science, from this perspective, could only reflect the findings and interests of a part of the community. If scientific practice had incorporated people with different experiences and perspectives in knowledge production, it would have grown in new directions. For example, Barbara McClintocks findings concerning the genetic structure of maize were revealed through an unorthodox method of investigation. She visualized chromosomal exchange via reproduction and discovered transpositiona discovery which would earn her the title of the only woman to have received an unshared Nobel Prize for Physiology or Medicine. Says Evelyn Fox Keller on McClintocks research: The word understanding and the particular meaning she attributed to it, is the cornerstone of Barbara McClintocks entire approach to science. For her, the smallest details provided the keys to the larger whole. It was her conviction that the closer her focus, the greater her attention to individual detail, to the unique characteristics of a single plant, a single kernel, of a single chromosome, the more she could learn about the general principles by which the maize plant as a whole was organized, the better her feeling for the organism (1983:101). Keller describes McClintocks relationship with maize in a romantic way, which calls into question the ideal in science of the detached observer. Traditional methods of scientific inquiry might not have led to McClintocks results. Longino (2002) and Keller (1983) hold that being a woman helped McClintock find this new method, since women have been historically socialized to be more empathetic and relationship-oriented. The two scholars also argue that both being female, and adopting an approach that incorporates strengths that are more traditionally associated with women, marginalized McClintock from the scientific community until her discovery of transposition earned her recognition and prestige. Just as the female perspective McClintock developed might yield different kinds of scientific methods and discoveries, disabled people can draw from their own experiences in order to shape the direction of fieldwork. The exclusion of disabled people from research may have thus obstructed the production of relevant, valuable knowledge about disability. When nondisabled researchers fail to take into account input from disabled persons when studying disability, they risk basing and building their research on ignorance and prejudice. Any assumption on the part of the nondisabled researcher that she/he knows better than the participant would be presumptuous and patronizing, but more than this, would be irresponsible insofar as the research produced might be limited, inadequate, and even wrong. Furthermore, there are political implications to silencing the voices of disabled people from research in that academic research can be used

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Playing the Field Conference Proceedings | Social Anthropology | York University 2009 to legitimize unjust practices and reinforce stereotypes. In The Mismeasure of Man, Stephen Jay Gould (1996) recounts the history of scientific inquiry, arguing like Longino (2002) that science is a social enterprise. That is, science is rooted in context and often involves the justification of biases and the promotion of these justifications as capital T Truth. Gould (1996) discusses the tests conducted in the 1800s to measure sculls in an effort to rank intelligence racially, based on brain mass. This kind of research supported and promoted racism, and served as justification for public policy and social practices predicated on the notion that racial inferiority existed (e.g. as cited in Gould (1996), the 1924 Immigration Restriction Act in the United States). As long as marginalized groups are excluded from academic research, they lack intellectual authority, and researchers who seek to establish and legitimize their own biases have the intellectual authority to inform public policy, social institutions, and even just common attitudes and perceptions. When disabled people are not given the opportunity to contribute to research about disability, key issues that concern them might be overlooked, and biases that should be redressed might instead be given academic backing. John W. Cresswell (2003) discusses the value of emancipatory or participatory research, whereby members of marginalized groups take part in the process and address research questions that are of interest to these groups: namely, questions about social justice and equality. His characterization of the research method is relevant to the nondisabled researcher studying disability: This research...assumes that the inquirer will proceed collaboratively so as to not further marginalize the participants as a result of the inquiry. In this sense, the participants may help design questions, collect data, analyze information, or receive rewards for participating in the research. The voice for the participants becomes a united voice for reform and change (10). The fieldwork itself might be disabling if the nondisabled researcher, even unintentionally, objectifies and alienates the disabled people being studied. Research can further marginalize members of minority groups by scrutinizing these individuals as objects of study. The process of objectification can be demeaning and dehumanizing. When people being studied are not given the opportunity to participate in the shaping of fieldwork conditions, such as interview questions or data analysis, relevant questions or themes might be disregarded, which can produce frustration, for no space for talking about the real issues for the studied opens up. In this way, research can be silencing, for it might not reflect the experiences or opinions of those being studied. Moreover, research participants might be affected when dealing with a nondisabled researcher who is not sensitive to the needs and experiences that disabled people encounter. Even when a nondisabled researcher is sensitive, her/his very presence as a nondisabled body can be alienating. For instance, fieldwork in critical fatness studies or on topics related to eating disorders might be conducted by a researcher who is thin and fit, which might make it difficult for research participants to share their experiences and feelings. Disabled people have in various ways been subject to systemic historical discrimination and disempowerment; it is therefore important that the nondisabled researcher be mindful of the power imbalance that might occur when conducting fieldwork. The nondisabled researcher already has more privilege in contrast with disabled persons and while carrying out research serves as a cognitive authority, thus having power in the field. Sensitivity to or awareness of this imbalance might result in the nondisabled researcher being more aware of accommodation issues (physically accessible spaces for physically disabled people, plain language for intellectually disabled people, oral tests for learning disabled people, as examples) and less likely to be charitable or demeaning, silencing or inappropriate. Also, such an imbalance might be redressed by involving participants in the fieldwork, giving them the opportunity to help shape and direct the research by, for instance, participating in the development of the study questions and taking part in the interpretation of the data. I have outlined how nondisabled researchers should conduct themselves in the disability

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Playing the Field Conference Proceedings | Social Anthropology | York University 2009 studies field. Perhaps I should be asking, though, whether the nondisabled researcher even belongs in this field. Given the intensity of the power imbalance between nondisabled researchers and disabled research participants, perhaps it would be ideal if research pertaining to disability only be conducted by disabled people. Furthermore, disabled people have actual stakes in the research results, vested interests in seeing the research carried to its conclusions. What might the nondisabled researchers interest in disability-related issues even be? Is it enough to be interested in social justice and equality? Is there space in the field for a nondisabled researcher, just as there might be space in feminism for men? Or, is speaking on behalf of a marginalized group always in some way patronizing, despite the best intentions of being empowering? It is perhaps the case that instead of treading lightly, the nondisabled researcher should find another field of study altogether because by default, her/his experiences and interest are not enough to justify being part of the field. Questions like this are not new in the field of anthropology, which has become increasingly self-reflective with respect to studies of those who are culturally different from the researcher. As a woman, I relate to disability studies, for I too am a member of an historically disadvantaged and marginalized group whose bodies have been subject to surveillance and control. However, by identifying with disability studies insofar as I am a woman, I risk co-opting the stories of disabled persons, then understanding those stories according to my own paradigm rather than being open and reflexive to them. There might be a point at which I cannot relate because I have not shared in the same kind of experience, not completely, only by analogy. Perhaps it is not enough that feminized bodies and disabled bodies share commonalities, for assuming the two sets of experiences are identical might be silencing. Jennifer Robertson (2002) cautions against taking positionality as a condition of researcher reflexivity too far. In reaction to a reviewer asking her why she does not position herself in her writing as academic, white, Westerner, woman (789), Robertson argues the following: 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. (789). When researchers choose not to position themselves in their research, they may be positioned without their consent. Her reviewer made assumptions about her identity without actually knowing Robertson, and Robertson would hold that identity slippages transpired as she engaged the participants of her ethnographic research. Identities are not ready to wear (788) packages; that is, they are not essentialist, static categories, nor are they always readily apparent. Reading the body without someones consent involves stereotyping. Beyond this, when falsely read as being privileged, a person may be pressed into admitting to identity characteristics that have been grounds for stigma and disadvantageidentity characteristics which may better serve a person hidden in exclusionary environments. When a researcher chooses not to self-identify, it may be that the assumption that the researcher is privileged misrepresents the researcher and pushes the boundaries of the researchers right to privacy. In the case of disability, a person may be disabled in a way that cannot be read on the body. Examples of invisible disabilities include learning disabilities, chronic pain, chemical sensitivities, and madness. It is possible a researcher might not publicly self-identify as having a disability, but nevertheless has one. I, for instance, have never been formally diagnosed, but I can claim to have a number of identity characteristics that have been or can be pathologized as indicators of mental health problems. I do not typically identify my reasons for relating to the disability community for fear of peoples perceptions of meof who I am, of even my strengths becoming disrupted, coloured, and simplified according to ableist stereotypes. Veganism ceases to be an impressive feat of self-discipline and will power when my history with eating disorders is

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Playing the Field Conference Proceedings | Social Anthropology | York University 2009 exposed. Dedication to my studies becomes less meaningful when people discover that I have obsessive tendencies that drive me to finish my work early and in a meticulous fashion, or anxiety about being around people that keeps me locked in my home and strapped to my computer for days. What have I managed to accomplish here, though, besides exposing myself and making readers uncomfortable? Is there value to this kind of self-disclosure? Do I not belong to the disability community until and unless I am outed? Am I not fully entitled to be a researcher in the field of disability studies until I situate myself, publicly make sense of my commitments and my interests relative to my identity, my experiences, my impairments? There is pressure in disability studies to self-identify; might this constitute an injustice, this push to expose and diagnose? Is there a place in the field of disability studies for a researcher who chooses not to situate her- or himself, chooses not to self-identify as having a disability? Or, does one only earn a place at that table now, and avoid the problems outlined above that the researcher faces in the field, by self-identifying?
Princeton University Press. Keller, Evelyn Fox 1983 A Feeling for the Organism: The Life and Work of Barbara McClintock. San Francisco: W. H. Freeman. Robertson, Jennifer 2002 Reflexivity Redux: A Pithy Polemic on Positionality. Anthropological Quarterly,75(4): 785-792.

Jen Rinaldi is a doctoral candidate entering

her fourth year in the Critical Disability Studies Program at York University.

References Alic, Margaret 1986 Hypatias Heritage: A History of Women in Science from Antiquity through the Nineteenth Century. Boston: Beacon Press Charlton, James I. 1998 Nothing About Us Without Us: Disability Oppression and Empowerment. Berkeley: University of California Press. Cresswell, John W. 2003 Research Design: Qualitative, Quantitative, and Mixed Methods Approaches, Second Edition. Thousand Oaks: Sage Publications, Inc. Gould, Stephan Jay 1996 The Mismeasure of Man. New York: W. W. Norton & Company, Inc. Longino, Helen E. 2002 The Fate of Knowledge. New Jersey:

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