Disability and Ethics Conference This Weekend – Low Expectations Based on Past Performance

On July 13, 2006, about 40 disability activists protested a bioethics conference in Albany, NY.  The picture above shows 7 of the protesters (there were about 40 in total) who successfully invaded the conference, holding signs and chanting “Nothing About Us Without Us!”

Here’s an excerpt from our flyer for the protest:

Disability activists are calling the Alden March Bioethics Institute’s Conference on “Bioethics in a Divided Democracy” a sham and a further effort to make sure that other stakeholders get shut out of important public policy debates.  The conference brings together bioethicists from the “right” and “left”.  The protest has been organized by Not Dead Yet, a national disability rights group that organizes for the disability community to oppose legalized euthanasia, assisted suicide and other forms of medical killing.

“We’re calling this conference a sham for a number of reasons,” says Stephen Drake, research analyst for Not Dead Yet.  “First, an important agenda that all participants in this conference share is to keep other stakeholders out of policy debates and protect their roles as the sole ‘experts’ on public policies affecting people with disabilities and the rest of the American public.  Second, it’s clear that many of the players in this  conference are working to keep our democracy a ‘divided’ one.  Organizer Glenn McGee takes a blatantly partisan approach in his bioethics advocacy.  His definition of ‘progressive’ appears to be to marginalize, exclude and sling mud at minorities who disagree with him, rather than engage them in meaningful debate.  The ‘frame’ of this conference advances that agenda for him.”

Disability activists point out that they have plenty of grievances with both ends of the ideological spectrum.  Conservatives claiming to respect life have attempted to cut off Medicaid payments for feeding tubes in both Missouri and Florida.  So-called, “progressives” have been advancing “futile care” statutes, which hospitals use to deny care to patients who they think are “too disabled” to benefit, even when that treatment is demanded by the family or the individual herself.  Glenn McGee has found new allies in Compassion & Choices, whose main mission is to legalize assisted suicide in this country.  The group’s latest “victory” was to lobby successfully for a statute in Colorado that gives medical professionals blanket immunity from manslaughter charges as long as an individual who has died in their care consented to palliative care.

Imagine my reaction – four years later – when I saw the following conference announcement:

Disability and Ethics through the Life Cycle: Cases, Controversies, & Finding Common Ground, May 21-22, 2010, Union College, Schenectady, NY

Despite a common interest in facilitating good medical care, bioethicists and members of the disability rights community sometimes differ in their approach to issues arising in the bio-medical settings, especially on such polarizing issues as abortion and physician-assisted suicide. Focusing on these polarizing issues, however, distracts attention from other ethical issues that affect people with disabilities in biomedical contexts. This conference will offer a forum for bioethicists, disability-rights advocates, and other stakeholders with a different focus for discussing these issues by viewing disability from a life -cycle perspective. People confront disability through the life cycle: infancy, childhood, reproductive years, middle age, and old age. At each age they confront situations with ethical dimensions that present them, their families, and their caregivers and biomedical researchers with ethical challenges. This conference is designed to promote interdisciplinary conversations about these less frequently discussed ethical issues. (Emphasis added.)

Two other things about the announcement and paper solicitation.  It states that “no papers on prenatal issues or assisted suicide will be considered.”  The second item of note is that one of the main sponsors is the Albany Law School, which means many of the same players from the 2006 Albany bioethics conference are involved in the planning and framing of the event.

There were and are a number of disturbing aspects of this announcement.  The suggestion that abortion has been a divisive issue between the bioethics community and the disability community is a gross distortion at best.  To the extent that prenatal issues have been discussed by disability scholars (and NDY has never taken part in these discussions in any way), the focus has been on prenatal screening and selective abortion for reason of future disability.  The criticisms don’t generally translate into suggestions for radical public policy changes.

As to assisted suicide, one would think from the description that there’s been a rich dialog between bioethicists and disability advocates.  If there has been such a discussion, I sure missed it.  It also seems to imply a coherent position on the part of mainstream bioethicists in support of assisted suicide – something that always got vehemently denied when we suggested that was the case.

Overall, though, is the glaring sense of entitlement that assumes the right to set the parameters regarding what topics are acceptable to discuss – especially insulting when directed at a group of people generally excluded and derided in your profession.

A couple of weeks after this announcement came out, Diane Coleman, NDY’s founder and president, received an invitation to to be a plenary speaker at this conference that seeks – according to its title – to find “common ground.”

Give me a break.

First of all, there have been several single-shot events by different entities over the years that accomplished nothing – except perhaps for the bioethicists who sponsored the events to pat themselves on the back for their one-time exercise in inclusion.  And, having done that, return to exclusion as a matter of standard operating procedure.

Mark Kuczewski, one of the plenary speakers, organized one such event at the Neiswanger Institute for Bioethics and Public Policy.  Kuczewski organized a conference around the topic of ethics and disability in 2001.  How did it go?  Well, there’s been no communication between NDY or other disability activists with Kuczewski and the Institute since then, but he has continued to write about disability, in a way that seeks to carve out a space for himself as some kind of arbiter in determining what is reasonable in the criticism of disability activists and which points can be safely ignored.  This is more or less what he did in a 2003 article written with Kristi Kirschner in the journal Theoretical Medicine.  One especially telling aspect of that article is when they wrote that activists had “found a manifesto in Wesley Smith’s book, The Culture of Death.”  It’s a deliberate and marginalizing image to put activists in a wagon pulled by someone else’s horse.

Another prominent participant in this event is Alicia Ouellette.  If you check out the link, her publications and presentations show she had developed an aggressive “interest” in disability and “end of life” – the latter a term she uses frequently without ever really defining.  I first noticed Ouellette when she seemed to show precognitive ability when she wrote an entry on the bioethics blog titled “Important End-of-Life Case in Massachusetts Reaches Critical Point.” The entry was about Haleigh Poutre, an abused 11-year-old girl who was beaten so badly she went into a deep coma.  At the time of Ouellette’s blog entry, the MA Supreme Court hadn’t rendered a verdict to the challenge of treatment removal on the part of her adoptive stepfather, who no doubt sought to beat a murder rap.  Nevertheless, her situation was referred to as an “end of life” case by Ouellette.  And Ouellette didn’t find it worth revisiting the subject two months later – after the judge had sanctioned Haleigh’s right to die a “dignified” death, she began to come out of the coma and is alert and doing well at last report.

Writing in the Oregon Law Review in 2006, Ouellette wrote out her analysis on “Disability and the End of Life.”  In the paper, she accuses activists of conflating disability and terminal illness.  Leaving a debunking of this aside, I think it’s worth noting that neither Ouellette nor other mainstream bioethicists have attacked the Final Exit Network or Compassion & Choices for their very blatant – and successful – maneuvers to conflate terminal illness and disability (and voluntary vs. involuntary, for that matter).  This article is a goldmine of ad hominem attacks and selective storytelling.  She makes sure to tie disability activists to religious political groups in relation to Schiavo, but also fails to mention the twenty or so national disability groups that expressed concerns over Schiavo’s situation and what it meant about dismantled protections for people under guardianship.  She “tells the story” of Elizabeth Bouvia, but without relating the personal events in her life that might have led any young woman into a downward slump.  She talks briefly about Larry McAfee but fails to credit disability advocates as the ones who got him what he wanted in order to live – a place to live outside of an institution. (CORRECTION: I have reread the article in question and Ouellette does indeed relate several personal losses and setbacks in Bouvia’s life cited by disability activists.  Later, though, she apparently gives them short shrift by referring to the “power of choice” – implying giving Bouvia an opportunity to die with medical assistance empowered her to live.)

Ouellette gets to do a session with another bioethicist describing the “diverging perspectives” between her community and ours on “classical cases” – Bouvia among them.  Evidently, the nondisabled bioethicists get to give both their take on these stories as well as ours.  It’s a clear message of just whose perspectives and interpretations count – and whose don’t.  Who speaks matters.

Similarly, Ouellette, along with Robert Baker – provides a closing and commentary at the end of the conference.  That tells us in advance whose evaluation of the issues really matters.

I could go on for quite awhile with a “rogue’s gallery” in terms of this conference, but even I’m getting tired of reading this right now.

If you get the idea that I’m not really thrilled about going to this, you’d be right.  Aside from Neiswanger and this event, the Hasting Center, The Center for Practical Bioethics, and a couple of others have hosted little “events” mingling us common folks with the bioethicists.  They produced no results, no follow-up.  Zip.

Unfortunately, I have to be there.  Believe me, this is not my idea of a great or productive weekend by a longshot.

If the past is any good indicator of the future, that is what this will be.  One more entity that can pat itself on the back for a moment of inclusiveness – and go back to the real business of marginalizing disability advocates and activists.  They’ll co-opt those things that they approve of and attempt to understand how better to undermine us in the future.

The reality is that this “discourse” around bioethics is more than just an exchange of philosophies, ideas, and experiences.  At the core, this is a political struggle over public policy – a struggle between those who have power and seek to hold onto it and those directly affected by the policies who want to take power,

And no one knows it better than the bioethicists who are hosting this event.

Just to be clear – I don’t think that the real “goal” is to find “common ground” – the goal is to use this to further bolster the dominance of bioethicists in public policy discussions.  I don’t believe it – I’ve seen too much of this kind of stuff before.

Fool me once, shame on you.  Fool me 4 or 5 times — someone give me a swift kick in the head to remind me never to fall for it again.  –Stephen Drake