Keynote 1 minnesota symposium in disability studies january 27 2011
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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 #1 Minnesota Symposium in Disability Studies January 27, 2011. Marginalization of People with Physical Disabilities.

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Keynote #1 Minnesota Symposium in Disability Studies January 27, 2011

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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 #1

Minnesota Symposium in Disability Studies

January 27, 2011


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”.


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.


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.


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.


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.


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.


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.


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.


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.


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


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.


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


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.


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.


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.


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.


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.


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.


Taxi Barriers

  • Illegal price gouging by wheelchair accessible taxi cabs.

  • Shortage of accessible taxis.

  • Insensitive cab drivers.


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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