More on "Not Dead Yet" protest at Bioethics and Politics

Yesterday, I posted a real-time report on the half hour delay of the Bioethics and Politics Conference in Albany by Stephen Drake and members of "Not Dead Yet." I held off on publishing an extended report, hoping that there would be more coverage. Unfortunately, a search on Google News shows that none of the mainstream media picked up the story. There's not even a note on the Not Dead Yet website. (Okay, I'll admit it: The lazy side of me was hoping that the press release would be online for ease of copy-and-paste. I would also like to read more about the communications between the organization and Glenn McGee, et. al.)The Scientist has a report on the incident at their blog.

Just before the (planned) 1:30 start time (as Richard Doerflinger, who was to be the first speaker, was setting up his PowerPoint presentation) a large group of wheel-chair bound and obviously disabled people walked in the front of the room. Then, they all started shouting "Nothing about us, without us." A few held hand-lettered posters with the slogan and some handed out two flyers. The chanting went on and on, as the registered conference attendees began to figure out that we were being picketted because there were no invited speakers who were identified as disabled or advocates for the disabled! (That was when I started typing my report.)

Finally, everyone around me began to question why the program leaders didn't come into the room and interfer.

After nearly half an hour, the powers that be announced that Mr. Drake would be allowed to address us. I was ready to give a standing ovation to the man who had won a forum to make a stand for those whom I agree are too often used and abused in the political and policy wings as well as in research.

Until Mr. Drake offended even me.

Unfortunately, Mr. Drake "cussed" (as we say in Texas) a couple of times, used the "F" word, and attacked doctors, caregivers, as well as the bioethicists. He accused us all of pushing the disabled out of the way in favor of our culture war. The flyer even attacked Wesley Smith for his review of "The Party of Death," because Mr. Smith hasn't protested against cuts in Medicaid.

He talked about the slant of conversation on disability issues and cases such as the recent killing of a 3 year old who had severe autism. There was a discussion about the Terri Schiavo case and his belief that the advocates for the disabled were shoved aside in favor of the more "sexy" polar debates and debators. However, there are many of us who feel that we are trying to restrain those who would harm our brothers and sisters.

One man in the back of the room shouted that we didn't need "that" (the language and attacks on individuals.)

He talked about the Terri Schiavo case and his belief that the advocates for the disabled were shoved aside in favor of the more "sexy" polar debates and debators. However, there are many of us who feel that we are trying to restrain those who would harm our brothers and sisters.

There was no mention of any - if any - efforts to work with the Conference administration. No acknowledgement of the 3 or 4 papers to be presented on the activism of the disabled community and/or Terri Schiavo's death and the events that led up to it.


I agree that the discussion of bioethics policy seems too often to be a bunch of people "making a living at it." Even Dr. Edmund Pelligrino commented (in his speech at dinner, last night) that too many bioethicists have become "personalities." However, while demanding respect, we must show respect.

Today's actions were not in the urgent defense of any life or against clear dangers - they were a "sexy" bid for attention that has not paid off in public attention and probably won few advocates, and turned off a few of us. Mr. Drake won, but he did not show grace in victory.

Any of the protesters could have registered and attended as I did. They could have asked questions and made comments at the sessions, as many did (although our time was shortened by the time taken up by the protesters.) I'm not sure whether any of the protestors submitted papers at all, but I would have liked to hear from Mr. Drake whether he had a paper that was rejected, rather than hearing that he wasn't invited to speak.

In the end, (again, unfortunately) the protesters actually gave us a mini-lesson of the politics that too often permeate bioethics discussions: the appeal to emotion and varied weight given to those who can wield power by force, public opinion, or claims to being more equal than others.