The most striking scene in the Albany bioethics conference was a protest carried out by disabled activists and their supporters just before the beginning of the conference. (And the next interesting one was the ending of the last symposium.) A group of wheelchair disabled people came into the conference room ten minutes before the opening of the conference, and suddenly began shouting, “Nothing about us without us!” Their voices of protest continued for almost 20 minutes. They were the members of the disabled group, Not Dead Yet, and their supporters. The participants were just sitting and looking at their protest. Then two (four?) persons of the group came the rear part of the room and began talking with the organizers. They were talking just beside the chair I was sitting on. I couldn’t hear their voices clearly, but this was a thrilling experience. Their protest reminds me of the Japanese disabled group, Blue Grass Group (Aoi Shiba no Kai), whose radical protests and direct actions marked the beginning of the Japanese grass roots bioethics movement in the early 1970s.
Anyway, a person from Not Dead Yet was allowed to speak in front of the audience for some minutes. He criticized the framework of the conference. He stressed that speaker(s) from the community of disabled people must be included in this kind of conference. They write in their leaflet:
Bioethicists have continually and deliberately excluded disability advocates and activists from some of the most critical public policy debates of our time even though people with disabilities are critical stakeholders who are directly and personally affected by many bioethics issues. Organizers of the Alden March Bioethics Institute’s Conference on “Bioethics in a Divided Democracy” have brought together bioethicists from the “right” and “left”, but have failed to include the unique perspective of disability rights advocates, including Not Dead Yet........The disability community demands its own place at the table. We do not want public policy decisions about our lives to be made in private without involving us!”
After the person’s speech, the audience burst into applause. The most impressive actor in the conference was not the right or the left, but the disabled. This event made me think that the dichotomy of the conservative and the liberal might not be the adequate framework of the discussion about current bioethical issues. Invited speakers in the conference were professors, medical doctors, lawyers, priests, or politicians, and the majority of them were “non-disabled” Caucasian males in public positions. As Not Dead Yet pointed out, many marginalized people were not included in the speakers. What do you think about this?
A report on the protest by Not Dead Yet was published in timesunion.com. This is Not Dead Yet website. Comment appeared on Women's Bioethics Project. See my paper “Disability Movement and Inner Eugenic Thought: A Philosophical Aspect of Independent Living and Bioethics” concerning the Japanese disabled movement.
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Photo: Lichtenstein in Osaka, America mura
-- M.Morioka www.lifestudies.org