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: http://www.notdeadyet.org/2012/10/ny-law-school-justice-action-centers-upcoming-annual-justice-symposium-not-fair-to-disability-advocates-let-alone-just.html

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 However, to use the terms "Special People, Special Issues" is so far out of date it boggles the mind.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.  
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Not Dead Yet Flyer

NOTHING ABOUT US WITHOUT US!

WE ARE DISABILITY RIGHTS ACTIVISTS WHO OBJECT TO A SYMPOSIUM THAT CLAIMS TO ADDRESS DISABILITY RIGHTS CONCERNS BUT INCLUDES NO PRESENTERS FROM THE DISABILITY RIGHTS MOVEMENT.

Today, Friday, November 16th, the Justice Action Center, part of New York Law School, is presenting a symposium entitled ” Freedom of Choice at the End of Life – Patients’ Rights in a Shifting Legal and Political Landscape.” 

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 www.notdeadyet.org.

NOTHING ABOUT US WITHOUT US (CONT.)

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:

New York Law School Law Review and the Diane Abbey Law Center for Children and Families, the American Bar Association Commission on Law and Aging; the National Academy of Elder Law Attorneys; the Elder Law Section of the New York State Bar Association; and Collaborative for Palliative Care, Westchester/NYS Southern Region.

For more information, contact www.notdeadyet.org.