Finding a Voice of Their Own: Exploring Disability Identity and the Articulation of Disability Rights

through the Narratives of Young Adults with Physical Disabilities

Keynote #1Minnesota Symposium in Disability

StudiesJanuary 27, 2011

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Marginalization of People with Physical Disabilities

• Diminished labour market participation• Higher Poverty rates.• Lower educational levels.• Results in what Dianne Pothier and Richard

Devlin have referred to as “dis-citizenship”.

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Narrative Methodology

• Originates in Law and Society research.• Captures lived experience to suggest possibilities of

legal strategies or political reforms by giving voice to marginalized groups.

• Attempts to give participants in study a voice in knowledge creation.

• Increasingly used in feminist theory, critical race theory and queer theory scholarship.

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Sample Profile

• In-depth qualitative 1-2 hour interviews with mostly young adult post-secondary students with mobility impairments, aged 18-24.

• Conducted by myself and my Research Assistants.• Replicates landmark study done by Frank Munger

and David Engel called Rights of Inclusion: Law and Identity in the Life Stories of Americans with Disabilities.

• Uses Life Narrative Methodology and open-ended question structure.

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Feedback by Participants

• Munger and Engel gave participants the opportunity to comment on their analysis.

• Attempt to cede power to the participants of the study.

• Can be seen as analogous to Participatory Action Research (PAR) that seeks to allow participants to direct research and which has been endorsed by NIDRR.

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Findings of Rights of Inclusion

• Study of Americans with mobility and learning disabilities who never filed a human rights complaint.

• Recursive relationship between rights and identity.• Identity and rights are mutually constitutive and

contingent: acquisition of a disability identity can facilitate contexts in which rights become active but the emergence of rights can also facilitate the growth of a disability identity.

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Rights and Identity

• Enactment of disability rights laws can transform individuals’ self-perception as private troubles become public problems and individuals learn to reject stigma.

• Enactment of disability rights laws spawn cultural shifts that transform how others regard people with disabilities.

• Rights may generate institutional transformations.

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My Study Methodology

• Dozen men and women from three post-secondary institutions.

• Primarily used the access services office at the institution to facilitate recruitment.

• Participants interviewed at a campus office or at their residence.

• Opportunity to comment on analysis.• Conducted Focus Groups for men and women.• Fifty percent of original participants took part in focus groups.

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Methodology II

• Small number of students over 24 (all women) were recruited from Institution C.

• Seven men and five women.• Diagnostic conditions included cerebral palsy, spina bifida,

and injuries acquired in motor vehicle accidents.• Several participants disclosed they also had learning

disabilities and/or psychiatric disabilities.• Did not interview full time workers nor long term social

assistance recipients.

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Detailed Profile Data

• All nine of the participants under age 24 were born with disabilities: five had cerebral palsy and two had spina bifida.

• Five of the twelve participants use attendant services for activities of daily living.

• Majority of sample use a wheelchair some or all of the time.

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Topics Addressed

• childhood experiences and friendships• barriers in driving and in using public transit• integration in the public school setting • relationships with siblings• work and/or volunteer experiences• post-secondary education experiences

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Topics Addressed #2

• accessing the social assistance program for people with disabilities in Ontario known as ODSP

• experiences at summer camps for children with disabilities

• Formation of an identity as a disabled person.

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Social Model of Disablement

• Research grounded in idea that structural barriers are the primary cause of marginalization of people with disabilities.

• Seeks to critically examine narratives through the lens of disability equality and disability discrimination.

• Raises questions of how appropriate social model is for life experiences of students with disabilities

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Integration in School Settings

• Despite Charter values, some parents had to fight for integration of their children.

• Anecdotally, children who grew up in rural areas seem to be more integrated than urban children.

• Parental attitudes and resources seemed to play a role in integration as higher income parents could more easily fight for it.

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Presence vs. Substantive Equality

• EAs were often given tasks apart from accommodating students with disabilities.

• One participant reported the principal refused to hire an EA to discourage him from attending resulting in mother acting as EA.

• Reflection of neo-liberal cutbacks in educational system.

• Men’s focus group identified continuity of EAs as one policy solution.

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Harassment by Pupils

• Female participant (Lisa) reported verbal abuse and/or being spat on by both female and male students.

• One participant reported physical violence by neo-Nazi gang.

• Tendency of school administrators to attempt to mediate bullying on the basis of disability.

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Physical Barriers

• Elevators constantly broken in Lisa’s case.• School teachers prohibited from carrying her up

and down the stairs.• Pupils such as Lisa were discouraged from using

elevator was working because it might stop working while she was upstairs.

• Lisa was required to demonstrate her ability to climb stairs in front of school PT and principal.

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Transportation Barriers

• Only one of nine of the younger participants possessed a driver’s license and drove even though many physically could drive.

• Financial barriers to obtaining a vehicle and paying for parking and gas.

• Difficult for students away from home to find hand controlled vehicles to practice yet lack of attendant services at home.

• Lack of time for teenager with physical, learning and psychiatric disabilities to drive.

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Various Transportation Barriers

• Graduated Licensing System creates new barriers by requiring additional driver.

• Cost of adaptive equipment was also a barrier.• Chronically late paratransit systems.• Must be booked long in advance.• Harassment and insensitivity by both bus

drivers and fellow passengers on regular bus system.

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Taxi Barriers

• Illegal price gouging by wheelchair accessible taxi cabs.

• Shortage of accessible taxis.• Insensitive cab drivers.

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Solutions

• Encourage EA Continuity: legislative amendment to regulations or potential Charter challenge to regulations regarding Individual Education Plans.

• Encourage teenagers to learn driving while in high school.

• Mandatory sensitivity and human rights training for public transportation workers.

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