On Friday, November 16th, the Justice Action Center, part of New York Law School, is presenting a symposium titled ” Freedom of Choice at the End of Life –Patients’ Rights in a Shifting Legal and Political Landscape.”
It would be understandable if you thought that this was actually an event planned and presented by Compassion and Choices, with the Justice Action Center merely playing the host. It would be clear because the presence of Compassion and Choices activists dominates this symposium. As nearly as I can determine, here is a list of C & C representatives at the Symposium in their respective sessions (in all but the ‘welcome’ session, there are additional participants/panelists as well):
- Peter J. Strauss, Symposium Chair, is listed as Adjunct Professor, New York Law School – he’s also on the Board of Directors of Compassion & Choices of New York;
- Kathryn L. Tucker, JD, Director of Legal Affairs, Compassion & Choices, Adjunct Professor of Law, Loyola Law School/Los Angeles;
Panel I: Taking Control and Preserving Autonomy
- Peter J. Strauss, Symposium Chair, Adjunct Professor, New York Law School (and C & C of NY Board Member) moderates the panel;
- David C. Leven, Executive Director, Compassion and Choices of New York as one of the panelists
Panel II: Real Time Critical Issues
- David Muller, M.D., Professor of Medicine and Dean for Medical Education, Mt. Sinai School of Medicine, New York; Director, Visiting Doctors Program (and, although it’s not mentioned, on the Board of Directors of Compassion and Choices)
That pretty much takes up the morning. In all fairness, it looks like the presenters at lunch and the concluding session have no direct connections to Compassion and Choices or the New York chapter.
However, there are multiple and major problems with the third panel of the Symposium. Here’s the title and description of that section:
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.
The title about “special” people should alert readers immediately that there will be no disability advocates or activists describing our conflict(s) with so-called “end of life” advocates. Most of us roll our eyes, make gagging noises or give other subtle cues that we detest the “special” label when someone uses it around us. This session, btw, is moderated by yet another board member of Compassion and Choices.
I would bet that the lion’s share of the load in terms of “discussing” the “issues of concern” that disability activists and advocates have will be the job of 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 can relate slanted, distorted and outright ‘straw man’ versions of disability critiques, concerns and strong objections to both bioethics and so-called ‘end of life’ advocates. (I’m not linking to her book – I hear it’s not selling well and it would be nice if it continued on that path.) Suffice it to say, Ouellette gets many things wrong about disability issues in her book – especially when it comes to NDY-related issues. Small wonder – she didn’t reach out to anyone we know of (in checking her preface) in disability advocacy who was actually involved in cases she talks about in her book – Elizabeth Bouvia, Larry McAfee and Terri Schiavo to name a few.
I am also guessing that the part of the session relating to “conservative theological values” will be dealt with by Ann Neumann who, aside from her role as “Editor, The Revealer, The Center for Religion and Media, New York University,” also writes on her blog ‘Otherspoon.’ Neumann is a ‘true believer’ in all things labeled ‘death with dignity’ and has a longstanding marked disdain for disability advocates who organize against pro euthanasia and assisted suicide groups. In her last post on ‘Otherspoon,’ she gave a good example of how she could drag disability activists into her discussion of ‘conservative’ religious activists. In a familiar move that privileged people make when they’re about to demean and dismiss members of a minority, she writes about her great ‘friendship’ with Bill Peace (Bad Cripple). That’s a conventional shield for what comes 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.”
In that second sentence, she manages to do two things – instead of giving a fair account of the concerns of disability advocates (including Bill) about these issues, she inserts extreme slogans from the Religious Right – and then implies that we are jumping on their bandwagon. But she doesn’t hate us – we’re just poor, scared little cripples who can easily be “recruited” by the right propaganda. She denies the agency of disabled people – those stands we take that she disagrees with can’t be our own – so we must have been slyly “recruited” (seduced or brainwashed are terms that are probably closer to what she’s actually implying).
That’s the kind of respect we “special” people can expect from this session.
What makes it all the more appalling is that this will happen under the auspices of the University’s Justice Action Center. The Center describes its goals, in part, this way:
… the Center seeks to instill in students a deeper intellectual understanding of the law regardless of their final career goals, and to present opportunities to maintain their ties to the social justice community beyond law school. Recognizing that students will pursue varied careers, the Center aims to provide a framework for analyzing the pervasive questions and contradictions relating to social justice in American society, irrespective of the context in which they may arise.
The main “contradiction” attendees will see at this symposium is the Justice Action Center’s failure to show even a modicum of respect in making sure the perspectives of disability advocates and activists are represented fairly and accurately. Do I have to add that ‘justice” would mean having disability activists themselves speaking for ourselves?
Shame on the Action Justice Center for showing everyone just how little respect and regard they have for people with disabilities.
Shame on the sponsors of this farce – the 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.
Shame on all these organizations for putting their collective stamp of approval on this farce. They should all know better. Most of them do know better.
If you’re thinking that I accidentally left Compassion & Choices of New York off of the list of sponsoring organizations that should be ashamed – it was intentional. I expect no better of any branch or chapter of Compassion & Choices. They have never failed to meet my low expectations of them.
It’s a shame to see so many organizations join them in their total disdain for disability activists and advocates.