Reflections: The Society For Disability Studies Conference

The Society For Disability Studies (SDS) is an organization of academics and activists who are working to increase the quality, […]

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The Society For Disability Studies (SDS) is an organization of academics and activists who are working to increase the quality, amount, and variety of research done on disability issues. It has been in existence for approximately thirteen years. In June, the SDS Annual Conference was in Chicago. I was fortunate enough to attend and would like to share some of my reflections.

The theme of the conference was “Activism and the Academy.” The idea was to look at ways to integrate current research into activism and community organizing. The conference was broken into three tracks. I followed the main track on activism and the academy.

Over the years I have felt a divide between activists and researchers in the disability community. As an activist, I have felt the tension between advocacy and the need for research to support that advocacy. This was a topic I have long wanted to see developed. I came away from the conference with mixed reactions.

I was interested, being an activist who sees the value of working together with researchers and in using research to support public policy initiatives, in getting a sense of how this was being done in other parts of the United States and internationally. I came away somewhat disappointed. It did not appear to me that activists and academics are working very well together here in the States. The sessions given by Americans were flat and without direction.

However, I did come away with hope. There was a panel of men from England who spoke about the projects they are working on and how they have integrated the two disciplines. Each man had a different philosophy about how to do this work, yet they all agreed this partnership is critical for the disability rights movement to be advanced. It would seem we “Yanks,” have something to learn from the “Brits.”

The ironic part of this conference was that the most impressive sessions to me were not those focused on the theme. The sessions with the most impact for me were two of the plenary sessions, one on the Americans With Disabilities Act (ADA) and a breakout session on Peter Singer, Chair of the Philosophy Department at Princeton University.

The first plenary session was given by a woman who consulted on the most recent progress report on compliance and enforcement of the ADA for The National Council On Disability (NCD). The other speaker in this session was Paul Miller from The Equal Employment Opportunity Commission (EEOC).

NCD’s report is quite critical of the lack of collaboration and coordination exhibited by governmental agencies responsible for enforcement of the ADA. It also recognizes that a lack of resources have been directed to those agencies making it difficult to impossible for them to adequately enforce the provisions of the law. The report faults the Clinton administration for this lack of resources. The administration has been supportive in word, but not in deed.

Commissioner Miller, while defensive of his agency’s record, had possibly the most important insight of the conference. He described how the passage of the 1964 Civil Rights Act was different from the passage of the ADA. Before the passage of the ’64 Civil Rights Act there was much discussion and dialogue for years before the passage of the law about racism and its impact on people of color and our society. People came to understand, if not agree, with the reasons and the need for societal change to occur.

The ADA on the other hand was passed when the time was right politically. The type of public dialogue about disability issues had not happened to the same depth and breadth as had happen 30 years before. This means we are playing catch up and are now doing the education and dialoguing that happened for people of color before the ’64 Civil Rights Act was passed. It also accounts for some of the backlash currently being experienced by people with disabilities with respect to compliance with the ADA.

Then there was the breakout session on Peter Singer. Singer made his reputation in the ecology movement. Most recently, he has been an out-spoken advocate for the euthanasia of infants with disabilities. As drastic as that may sound, he bases his arguments on his definitions of self-awareness and quality of life. Singer argues that some animals such as domestic dogs and cats have more self-awareness than an infant with Downs Syndrome or spina-bifida. His theory is not limited to these diseases alone. As a result, he believes their quality of life can never reach that of a non-disabled child of the same age, nor does he believe that adults with disabilities can really be happy and experience a good quality of life.

He sites a study, which finds that over 60 percent of adults with disabilities express dissatisfaction with their lives because of their disabilities. He does not consider the societal effects of living with a lack of community supports such as adequate and affordable accessible housing, good transportation, access to home and community based care, etc.

Members of the panel who had spoken about their experiences of attempting to engage Singer in dialogue had one common theme. Up until now, many disability activists felt Singer was a “detached, somewhat cold theoretician.” Instead the conclusion of the panel is that Singer, in fact, is very calculating in the way he puts his views out to the public. He is clever, although some of the scholars found his scholarship to be “a little sloppy,” meaning that they found holes in his arguments. The panelists agreed that Singer is not the only philosopher saying these things about people with disabilities, and while that in itself is dangerous, he is the most mainstream and thus he warrants our attention.

My final reflection on this year’s SDS conference is that I went to listen for threads of what the next “model” of disability after the “Interactional” model might be. I came away with the conclusion that many people have good ideas, but nothing has come to the point of a community consensus yet. The only point of agreement is that we do need to be thinking and talking about what comes next. In future columns I will write more about this subject.

Lolly Lijewski is the Advocacy Manager at the Metropolitan Center For Independent Living. She can be reached at (651) 603-2022.

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