Research That Enhances Lives, Not Annihilates Them

Filed Under (Activism, Critical Disability Studies, Research) by Estee on 12-04-2009

I know that as a parent of an autistic child, I want to see much more research on what enhances the lives of autistic individuals, not research that seeks to annihilate autism. I want research that shows how autistic people learn and what they have already contributed to the world in order that an autistic way of doing and thinking is more valued in this society.

I believe with all my heart that there is a place for Adam —  many places among us all where he will contribute greatly. I believe it so much,  I joined the Critical Disability Studies Department at York University; to help make the dialogue as prominent, if not more so, than the research funded for cures. 

I am at a university which not only has such a department that questions all status quo notions about disability, but also talks fundamentally about social justice. It is so ironic because nearby work the to “fight this terrible disease,” and across the way, a behavioural department seeking to modify undesirable autistic behaviour. It’s an interesting mix, this microcosm of the world the UNIVERSE-CITY. (University was never as subdivided as it is today. The focus used to be on studying everything so one had a universal knowledge — sort of like a renaissance-man sort of body of knowledge where one area of study would inform the other. Scholars often note the dumbing-down of a university education with areas of specialty. This is what the Critical Disability Studies Department does not do. It culls from philosophy, history, sociology, law, culture, art and more to study disability).

If you are interested in this kind research (and there are more calls for social research out there everyday), you can start at the Interagency Committee on Disability Research to start. Check out the universities as well. The more we ask, the more we may receive:

 

The ICDR Seeks Your Recommendations on Emerging Disability Research Topics

Web site provides opportunity to vote and prioritize disability issues of greatest concern

This year for the first time, the federally mandated Interagency Committee on Disability Research (ICDR) is utilizing an innovative Web-based approach to collect online disability research comments to assist in developing a federal disability and rehabilitation 2010 research agenda. This technology-driven approach gives the public a three-week time frame from March 27th through April 17th to submit their recommendations.

Additionally, registered participants will be invited to review all comments submitted and vote on their top ten concerns in each topic area during the one-week period from April 22nd through April 29th. Public comments from stakeholders are the focal point of the disability research recommendations in the ICDR Annual Report to the President and Congress.

All disability-related research topics are welcomed, including discussion about concerns important to the veteran and military communities. The ICDR is seeking comments with special emphasis placed in the following areas:

  • Collaboration and coordination among federal agencies;
  • Health information technology and/or electronic health records;
  • Health disparities;
  • Health promotion in the workplace;
  • Employment and health; and
  • Other critical research issues.

Guidelines and Instructions:

  • To submit your comments and vote via the Web site you must create an account.
  • If you have problems submitting comments via the Web site please either:
    • e-mail your comments to ICDRevents@cessi.net,
    • fax them to 703-442-9015, or
    • mail them to: ICDR c/o CESSI, 6858 Old Dominion Drive, Suite 250, McLean, VA 22101.
  • Written comments must be:
    • No longer than 250 words or 1,500 characters
    • Single-spaced using 12-point font in Times New Roman
    • Received or postmarked by April 17, 2009 (3:00 P.M. EDT)
  • Online Public Voting: April 22–29, 2009 (11:59 P.M. EDT)

About the ICDR

The ICDR is authorized by the Rehabilitation Act of 1973 (as amended) to promote overarching coordination and cooperation among federal departments and agencies conducting rehabilitation research programs and activities. Major roles of the ICDR are to identify research duplication and gaps, secure public input and compile data to inform future research, promote communication and coordination, and facilitate interagency collaboration.

The ICDR brings together agency representatives, policy makers, advocates and people with disabilities through a Senior Oversight Committee (SOC) and subcommittees. The SOC is the ICDR administrative body that spearheads interagency collaboration and research coordination. The subcommittees represent specific areas of disability research including education, disability statistics, employment, medical rehabilitation, and technology. The ICDR facilitates the exchange of information on disability and rehabilitation research programs, activities and collaborative projects among ICDR member agencies and federal partners.

For more information about the ICDR, visit the Web site: www.icdr.us.

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.