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Disability Studies Fieldwork_Jen Rinaldi

Disability Studies Fieldwork_Jen Rinaldi

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Published by yorku_anthro_conf
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 one’s identity and privacy?

Keywords: Disability, disability studies, fieldwork, self-disclosure, knowledge-production
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 one’s identity and privacy?

Keywords: Disability, disability studies, fieldwork, self-disclosure, knowledge-production

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Published by: yorku_anthro_conf on Aug 31, 2011
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08/31/2011

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Disability Studies Fieldwork: Does the NondisabledResearcher Belong?
Jen Rinaldi
PhD Candidate in Critical Disabilities Studies, York University, Toronto, ON
I
n this article I investigate the complications that arisewhen a researcher who does not identiy as having adisability engages in eldwork pertaining to disability.Disability studies is a discipline that has emerged inpart in response to mainstream eldwork that involvesthe study o disabled people but has not called ortheir active participation (e.g. education and psychology). Ipresent the epistemological and political implications totheir historical exclusion rom eldwork. I also bring to lightthe inequalities and power dynamics that a nondisabledresearcher might encounter when studying disabled people.Where then, I ask, does that leave me as a supposedlynondisabled researcher? What responsibilities does aresearcher have to sel-disclose, and at which point doesthe pressure to sel-disclose constitute a violation, inasmuchas disclosure in a context that still stigmatizes disabilitycould lead to loss o control over one’s identity and privacy? The category o disability itsel encompasses people withphysical disabilities, including wheelchair users and blindpersons; invisible disabilities such as learning disabilities andchemical sensitivities; linguistic minorities like Dea persons;and disabilities aecting mental state and intelligence. Whilethe category is broad and the disability community has itsown problematic internal hierarchies, all these sorts o peopleare subsumed under the title ‘disability’—a political categorydened by the exclusion and disadvantage they all experience. They are united in their experience o oppression, and in theirdierence, to the extent that they all deviate rom the physicaland mental states that are socially accepted as species-typical.Disability studies encourages the active participation o disabled people in scholastic research, in large part as aresponse to current and historical research about disability.According to James I. Charlton, the power o a popularslogan or disability activism ‘nothing about us without us’,“derives rom its location o the source o many types o (disability) oppression and its simultaneous opposition tosuch oppression in the context o control and voice” (1998:3).Disabled people have been systemically excluded rom ullparticipation in their communities due to physical barriersand social stigmas, and academia is no exception. Studieshave been conducted about disability, and have ocused onsubjects and populations who have disabilities. However,only recently, with the rise o disability studies, have we
 
Abstract
 This article investigates thecomplications that arise whena researcher who does notidentiy as having a disabilityengages in eldwork pertainingto disability. Disability studies isa discipline that has emerged inpart in response to mainstreameldwork that involves thestudy o disabled people buthas not called or their activeparticipation (e.g. educationand psychology). The authorpresents the epistemologicaland political implications totheir historical exclusion romeldwork. The author alsobrings to light the inequalitiesand power dynamics that anondisabled researcher mightencounter when studyingdisabled people. Where then,does that leave a supposedlynondisabled researcher?What responsibilities does aresearcher have to sel-disclose,and at which point doesthe pressure to sel-discloseconstitute a violation, inasmuchas disclosure in a context thatstill stigmatizes disability couldlead to loss o control over one’sidentity and privacy?
Keywords
Disability, disability studies,eldwork, sel-disclosure,knowledge-production
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particular meaning she attributed to it, isthe cornerstone o Barbara McClintock’sentire approach to science. For her, thesmallest details provided the keys tothe larger whole. It was her convictionthat the closer her ocus, the greaterher attention to individual detail, to theunique characteristics o a single plant, asingle kernel, o a single chromosome, themore she could learn about the generalprinciples by which the maize plant asa whole was organized, the better her‘eeling or the organism’ (1983:101).Keller describes McClintock’s relationship withmaize in a romantic way, which calls into questionthe ideal in science o the detached observer. Traditional methods o scientic inquiry mightnot have led to McClintock’s results. Longino(2002) and Keller (1983) hold that being a womanhelped McClintock nd this new method, sincewomen have been historically socialized to bemore empathetic and relationship-oriented. Thetwo scholars also argue that both being emale,and adopting an approach that incorporatesstrengths that are more traditionally associatedwith women, marginalized McClintock romthe scientic community until her discovery o transposition earned her recognition and prestige.Just as the ‘emale perspective’ McClintock developed might yield dierent kinds o scienticmethods and discoveries, disabled people candraw rom their own experiences in order toshape the direction o eldwork. The exclusiono disabled people rom research may have thusobstructed the production o relevant, valuableknowledge about disability. When nondisabledresearchers ail to take into account input romdisabled persons when studying disability, they risk basing and building their research on ignoranceand prejudice. Any assumption on the part o thenondisabled researcher that she/he knows betterthan the participant would be presumptuousand patronizing, but more than this, would beirresponsible insoar as the research producedmight be limited, inadequate, and even wrong.Furthermore, there are political implicationsto silencing the voices o disabled people romresearch in that academic research can be usedseen disabled people conducting, designing,or taking part in the research, and serving inany other capacity besides as objects o study. There are epistemological implications to theexclusion o disabled persons rom studiespertaining to disability. This minority groupmay have something new to oer that wouldurther research and produce dierent kinds o knowledge. To develop this argument, I will analyzethe implications to the exclusion o women romscientic inquiry, or women and disabled peopleshare (or have shared) common experiences o marginalization rom academic pursuits. MargaretAlic presents the history o emale scientists in
Hypatia’s Heritage: A History of Women in Sciencefrom Antiquity through the Nineteenth Century 
,arguing that their stories–that is, their collectivecontributions–have largely been overlooked:“Throughout history women scientists have beenignored, robbed o credit and orgotten” (1986:10).For eminist philosopher o science Helen E.Longino (2002), knowledge-productive processesare more social than we may realize, and weproduce new and dierent knowledge claimsonly by including the voices o all members o ourcommunity. In
The Fate of Knowledge
, she writes,“not only must potentially dissenting voices notbe discounted; they must be cultivated” (132). Sheargues that scientic inquiry has been stymiedinsoar as the voices o women have been silenced:their ndings have been ignored and they haveaced systemic barriers to ull participation inscientic inquiry. As a result, science, rom thisperspective, could only reect the ndings andinterests o a part o the community. I scienticpractice had incorporated people with dierentexperiences and perspectives in knowledgeproduction, it would have grown in new directions.For example, Barbara McClintock’s ndingsconcerning the genetic structure o maize wererevealed through an unorthodox method o investigation. She visualized chromosomalexchange via reproduction and discoveredtransposition—a discovery which would earn herthe title o the only woman to have received anunshared Nobel Prize or Physiology or Medicine.Says Evelyn Fox Keller on McClintock’s research: The word ‘understanding’ and the
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‘Playing the Field’ Conference Proceedings | Social Anthropology | York University 2009
 
‘Playing the Field’ Conference Proceedings | Social Anthropology | York University 2009
members o minority groups by scrutinizingthese individuals as objects o study. Theprocess o objectication can be demeaningand dehumanizing. When people being studiedare not given the opportunity to participate inthe shaping o eldwork conditions, such asinterview questions or data analysis, relevantquestions or themes might be disregarded,which can produce rustration, or no space ortalking about the real issues or the studied opensup. In this way, research can be silencing, or itmight not reect the experiences or opinionso those being studied. Moreover, researchparticipants might be aected when dealing witha nondisabled researcher who is not sensitiveto the needs and experiences that disabledpeople encounter. Even when a nondisabledresearcher is sensitive, her/his very presence as anondisabled body can be alienating. For instance,eldwork in critical atness studies or on topicsrelated to eating disorders might be conductedby a researcher who is thin and t, whichmight make it difcult or research participantsto share their experiences and eelings.Disabled people have in various ways beensubject to systemic historical discrimination anddisempowerment; it is thereore important that thenondisabled researcher be mindul o the powerimbalance that might occur when conductingeldwork. The nondisabled researcher alreadyhas more privilege in contrast with disabledpersons and while carrying out research serves asa cognitive authority, thus having power in theeld. Sensitivity to or awareness o this imbalancemight result in the nondisabled researcher beingmore aware o accommodation issues (physicallyaccessible spaces or physically disabled people,plain language or intellectually disabledpeople, oral tests or learning disabled people,as examples) and less likely to be charitable ordemeaning, silencing or inappropriate. Also,such an imbalance might be redressed byinvolving participants in the eldwork, givingthem the opportunity to help shape and directthe research by, or instance, participating inthe development o the study questions andtaking part in the interpretation o the data.I have outlined how nondisabled researchersshould conduct themselves in the disabilityto legitimize unjust practices and reinorcestereotypes. In
The Mismeasure of Man
, StephenJay Gould (1996) recounts the history o scienticinquiry, arguing like Longino (2002) that scienceis a social enterprise. That is, science is rootedin context and oten involves the justication o biases and the promotion o these justicationsas ‘capital T Truth’. Gould (1996) discusses thetests conducted in the 1800s to measure scullsin an eort to rank intelligence racially, basedon brain mass. This kind o research supportedand promoted racism, and served as justicationor public policy and social practices predicatedon the notion that racial ineriority existed (e.g.as cited in Gould (1996), the 1924
ImmigrationRestriction Act 
in the United States). As long asmarginalized groups are excluded rom academicresearch, they lack intellectual authority, andresearchers who seek to establish and legitimizetheir own biases have the intellectual authorityto inorm public policy, social institutions, andeven just common attitudes and perceptions.When disabled people are not given theopportunity to contribute to research aboutdisability, key issues that concern them might beoverlooked, and biases that should be redressedmight instead be given academic backing.John W. Cresswell (2003) discusses the value o emancipatory or participatory research, wherebymembers o marginalized groups take part inthe process and address research questionsthat are o interest to these groups: namely,questions about social justice and equality. Hischaracterization o the research method is relevantto the nondisabled researcher studying disability: This research...assumes that the inquirerwill proceed collaboratively so as to noturther marginalize the participants asa result o the inquiry. In this sense, theparticipants may help design questions,collect data, analyze inormation, or receiverewards or participating in the research. The ‘voice’ or the participants becomes aunited voice or reorm and change (10). The eldwork itsel might be disabling i thenondisabled researcher, even unintentionally,objecties and alienates the disabled peoplebeing studied. Research can urther marginalize
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