Thursday, July 13, 2006

Live from New York ! -- the ASBH Politics and Bioethics conference!

Listen to our podcasts (1 and 2) about the how the 'rumble' in Albany started off with a bang!

Fellow blogger Alison McCook had this to say about the conference:

The Bioethics & Politics conference hosted by the Albany Medical College got off to a bang today, not a whimper. As participants trickled in, networking and finding old friends, another, uninvited group calmly filed in, parked in front of the room, and started shouting at the tops of their lungs.

The protesters, around 30 or so, were from Not Dead Yet, a disability rights group that is against legalized euthanasia and other forms of "medical killing," as they call it. The meeting hall became quickly filled with cries of "nothing about us without us." Members quickly distributed fliers to participants that explained they were upset that conference organizers had gathered people from both sides of the political spectrum, but failed to include advocates of the disabled.

Huh? I’m all about pluralism, but the conference is about politics, and with only a day and a half at our disposal, it makes sense to focus the discussion. However, the director of the AMC’s Alden March Bioethics Institute, Glenn McGee, to his credit, took the microphone and said the organizers had decided to give Not Dead Yet a chance to speak. (Glenn even managed to open with a joke: "As you can see, everything is going according to plan.") Representative Stephen Drake spoke for 10 minutes about how politics is not important to people at the front lines of hot button issues ("We live in a world where partisan lines aren’t that important"), and received as much applause as any pre-planned speaker did the rest of the day. After his speech, he and his colleagues left, and it was all very civil.

The experience clued me in to the fact that bioethicists are, by the nature of their purview, adept at handling heated debates and, hopefully, finding a compromise many people can live with. If only other discussions had such a happy ending as this one.

4 comments:

Bruce Darling said...

As one of the people who participated in the action and a long-time Not Dead Yet activist, I very much appreciated the posting on your blog!

It has been almost impossible for the Disability Community to get anyone to recognize that we have any perspective at all on issues that are so critical to our community… much less a valid perspective that should be listened to and considered.

People with disabilities have also struggled against the “medical model” and medical professionals who have exerted an inordinate amount of control over our lives (and deaths). The paradigm is shifting. A civil rights consciousness is growing in the Disability Community, fostered by disability rights activists and advocates who no longer want to be treated as “helpless patients”. We are fighting for our independence and our rightful place in these discussions about our lives.

Complicating this fight is the fact that the “disability perspective” does not easily align with the prevailing views of either “the Left” or “the Right.” We find that “progressives” who want to “take care” of us, limit the control we can have over our bodies to the point of trying to override the decisions we make. Conservatives will support our right to live, as long as they don’t have to pay for it, and they continually cut back on critical services.

Consequently, we find our perspectives are pushed aside, minimized and dismissed by both sides of the “culture wars.” We are branded as “instruments of the religious right” or “poster children of the left” depending on the issue and with whom you are speaking.

The vast majority of the people who participated in the action got up at 4:00 AM to make the trip to Albany. They needed to make special arrangements with attendants. They had to set up special transportation. They had to take time away from their jobs.

They did all of this (and more) because they are personally affected by these issues. When he gave the impromptu "keynote," Stephen Drake spoke about Joe, a man from Rochester who had osteogenesis imperfecta. Joe had a series of strokes but got less than aggressive medical care because of his brittle bones. Joe was encouraged to "let the situtation run its course" by doctors who had never met hime before. Even his primary care physican refused to continue to serve him if he wanted to live and return to the community. Joe's wife, who lives with cerebral palsy and fought hard to save her husband, was thrilled that the story of their struggle was finally being told.

This situation was not isolated. The group had many of these stories that they shared with Stephen.

We came to the conference hoping to make a simple point. The disability perspective is unique in the bioethics dialogue, and it is a valid perspective that must be considered.

Your posting affirmed that at least some people heard us.

Thank you.

Arlene Wilson said...

The comments were insightful and appreciated. There is an old adage that there are three sides to any argument: his side, her side and the truth. The inclusion of this protest gorup provided that third perspective in the bioethics debate, the has been historically framed as a Liberal versus Conservative issue.

morioka said...

Hi! I was in Albany, too. I wrote about Not Dead Yet's protest in my blog http://www.lifestudies.org/weblog/2006/07/protest_by_disabled_people_not.html. It was a great pleasure that I could see Kathryn Hinsch at the conference.

Linda MacDonald Glenn said...

Bruce, I did attempt to interview Stephen Drake and would have loved to podcast his thoughts, but I think he was somewhat hesitant -- maybe next time he'll let us interview him.