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Saturday, November 17, 2012

Conference Controversy

It is my understanding that the below flyer was handed out at Justice Action Center conference yesterday. I read about this conference weeks ago. I thought about attending despite the fact the scholars speaking are virtually all associated with Compassion and Choices. I know three of the speakers and two on the panel "Special People Special Issues". I am also in the midst of writing a long review essay on bioethics and disability. Alicia Quellette's Bioethics and Disability is one of the texts I am reviewing. After some thought I decided not to attend. Unbalanced one day conferences are not unusual. But something struck me as inherently wrong about the conference. Simply reading about the conference made me wary. I suspect others shared my discomfort and chose not to attend. By far the strongest critic was Stephen Drake. He was severely critical of the conference. See:

I think Drake is too harsh but one cannot dismiss the validity of his concerns. The preponderance of scholars associated with Compassion and Choices should have been acknowledged. The utter lack of any person associated with the disability rights movement is puzzling at best. Ignoring the lack of disability representation, I was troubled for three reasons. First, if I attended I would have been the lone opposition voice and person with a disability. While I embrace the moniker Bad Cripple had I been present and dissented it would be all too easy to dismiss my views. I would be a stereotype of the angry, bitter and, yes, a bad cripple. I did not want to be the straw man. Second, I am stunned by the panel title: "Special People Special Issues". I am not one to engage in polemical battles over the use of words--such debates are largely fruitless in my estimation. However, to use the terms "Special People, Special Issues" is so far out of date it boggles the mind. I am equally stunned the presenters, Alicia Quellette and Ann Neumann, did not vigorously object. Perhaps they did, I do not know. But I can state without question I would not have made a presentation unless the conference organizers changed the session name. This is 2012 not 1952. The language used demonstrates an utter disregard for the last 20 years of political activism on the part of people with a disability. Third, the tension between those in bioethics and disability rights is widely known. I have bemoaned this divide for quite some time. I will readily acknowledge my early work in opposition to the Ashley X Case and severely critical comments about Christopher Reeve contributed to the divide.  Efforts at a reconciliation between bioethicists and disability rights activists have all been unsuccessful. This conference demonstrates why disability activists and disability studies scholars object to bioethics. There is no representation, none. Quellette's presence is not as an activist or disability studies scholar but as a bioethicist and lawyer. The agenda set is hopelessly skewed, the imbalance of power grossly unbalanced. From the start disability activists and disability studies scholars are on the defensive. For instance, Ann Neumann notes below my autonomy is threatened by hypothetical others. Bigotry and ignorance abound, it is not hypothetical. Disability based bias is very real and has lethal implications. Does this really need to demonstrated? A vast literature exists that details a long history of disability based bigotry.

Here is my naive hope. We need to get people from Compassion and Choices and Not Dead Yet, lock them in a room and not let them out until they learn to show mutual respect for each other. We need to do the same with bioethicists like Peter Singer and Jeff McMahan and disability studies scholars such as Anita Silvers and Eva Kittay. I have always felt one can learn more from others who you strenuously disagree with. Such an encounter can force one to hone their views and writing.  
Not Dead Yet Flyer



There are multiple and major problems with the third panel which the Symposium materials describe as follows:

“Panel III: Special People, Special Issues
This panel will discuss the issues of concern for people with disabilities and the conflict between organizations dedicated to protecting their rights and end-of-life advocates. The panel will discuss the views of some of the major religion (sic) and whether conservative theological values can co-exist with patient choice. Finally, the panel will conclude with a discussion of the quality of medical care provided to prisoners and how their end of life choices are treated.”

It is likely that “issues of concern” to disability rights activists will be discussed by panelist Alicia Ouellette.  Ouellette recently published a text on bioethics and disability – apparently becoming the newest bioethicist who wants to become known as the “disability-conscious” bioethicist – someone who relates slanted, distorted and outright “straw man” versions of disability critiques, concerns and strong objections to both bioethics and so-called “end of life” advocates.  Ouellette gets many things wrong about disability issues in her book.  

For more information, contact


It appears likely that panelist Ann Neumann will focus on religious issues, but her blog “Otherspoon” has demonstrated her longstanding marked disdain for disability advocates who organize against pro-euthanasia and assisted suicide groups.  In her July 2012 post on “Otherspoon,” she used a familiar move that privileged people make when they’re about to demean and dismiss members of a minority, writing about her great “friendship” with disability studies academic Bill Peace (Bad Cripple blogger), a conventional shield for what came next in her post:

I would never take him to task for how he feels.  Or over not seizing his autonomy from hypothetical others, including “pro-life” organizations that have worked very hard to recruit disabled individuals and groups to “their side”–with scary threats of a “culture of death” just waiting around to kill off the “abnormal.”

Instead of giving a fair account of the concerns of disability advocates about these issues, she inserts extreme slogans from the Religious Right – and then implies that we are jumping on their bandwagon because we’re just poor, scared little cripples who can easily be “recruited” by the right propaganda.  She denies the agency of disabled people, asserting that those stands we take that she disagrees with can’t be our own.

What makes this all the more appalling is that this Symposium will happen under the auspices of the University’s Justice Action Center.  Sadly, the Justice Action Center fails to show even a modicum of respect in making sure the perspectives of disability rights advocates and activists are represented fairly and accurately, and by disability rights activists ourselves, as other minority groups and women would have a right to expect.  

On November 12, we wrote to the following Symposium co-sponsors, urging them to withdraw their sponsorship:

For more information, contact

Friday, November 16, 2012

A Reset Button for People with a Disability

A few days ago, November 12 to be precise, Stephen Kuusisto wrote a brief but fascinating post, Dusting Your Brains: A Disability Rant, on his blog Planet of the Blind. He wondered if there is a control, alt, delete reset for the human brain when confronted with inane social interactions. Kuusisto related a story about being at an airport and being told he had to use a wheelchair because "it is the rule". Ask any person with a disability and they can regale you with a host of entertaining stories. Airports are great fodder for ignorance and illogical so called rules. For instance, once in a while I am asked by airline personnel "can't you walk just a little bit". Ignorance and inappropriate social interaction is not limited to the airport. I have been accosted in just about every social setting one can imagine. Once I was screamed at for block after block in New York City by a homeless man who was convinced I was the "Anti-Christ". Health care professionals also have a penchant for saying remarkably inappropriate things. When my son was a little boy a physician told me "people like you should not have children". He said this in an emergency room while he was stitching up a cut on my son's finger. Gee, thanks for sharing.

Kuusisto wrote that people in disability land need to have a good relationship with their reset button. On this point, I could not agree more. When confronted and disrespected by the hordes of bipedal people that surround me daily I get angry. My anger burns a whole in my gut. I cannot let things go and replay in my mind over and over a negative interaction. I wonder could I have done something to avoid the person that demeaned me. But one sensation more than any other burns bright-- anger. Here I sit 34 years post paralysis and  22 years post ADA and yet ignorance abounds. Social and needless architectural barriers remain common place. Worse yet, my reset button is not working well. I have been avoiding social interaction. I have been going out at odd times when I know few people will be milling about. In part I am hesitant to go out because we are the verge of the holiday season. All that supposed good cheer is freely shared. I saw the Salvation Army guy last night ringing his bell. I hate those fucking bells and pushy Salvation Army bell ringers. What sticks in my craw though is the false good cheer and panic to buy stuff. Black Friday is gross, materialism at its worst. In terms of disability the holiday season is oppressive. A charity model of disability springs to the forefront of the minds of people that know nothing about disability. All of a sudden everyone wants to help me. Everyone smiles at me. Old ladies pat the top of my head and tell me I am a good boy. When I get gas people want to help me put my wheelchair back in the car.  The offers of assistance come fast and furious. None of them are sincere. Well, actually that is incorrect. Many years ago I was with my son a few days before Christmas. We were driving into New York City to see an all too rare afternoon NY Rangers hockey game at Madison Square Garden. On the drive into the city I got a flat tire. Amazingly I got the flat next to a highway gas station. I pulled into the small parking lot thankful I was not on the side of the road. I open the trunk, pull out the jack and the spare tire. I am about to work on loosening the lug nuts when a young man taps me on the shoulder and asks me if I need help. I am indecisive, unsure to say yes until the man's girlfriend says he is a mechanic. Cool. The young man helps me out and changed the tire in world record time. I reach into my wallet to give him some cash. He says no thanks. I tell him come on buy your girlfriend some flowers. I get a more emphatic no. My son suddenly chimes in "Dad you don't need to give him money. Santa is watching and he is going to be way impressed. They are going to make out like bandits on Christmas for helping us". When I am ready to give up on humanity I think of this story, take a deep breathe and hope my reset button will work better tomorrow.