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

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

  1. I would just like to say, thank you for posting your insightful and poignant thoughts, and for creating this excellent blog in the first place. I have often thought of a need for people in the disability rights movement to announce “we’re not dead yet”, in so many words, but had not known that it had actually been done in those exact words by people working in this movement. I am playing catch-up here, but am grateful that you are supplying this information. I have a disability – actually a couple of them – and in the past I resorted to suicide attempts because of the psychiatric problems I was having. Today, I am lucky and glad that I survived and do not think fondly of the people who gave me tips on how to kill myself “successfully” five years ago. I hope some such people come across your blog.
    Thank you.

  2. Thank you, Stephen, Diane Coleman and NDY, and ADAPT – I can’t go. Am 98% homebound and it’s too far away for me (due to ME/CFS). I was so delighted by the photo of our “peeps” with protest signs at the 2006 conference.

    I am proud to support NDY. I am pro-choice/pro-abortion.

    Policy makers/discussions will have to recognize us. It’s not
    “common ground” for me: the people who insist on their right to make decisions for me, are not sitting in my wheelchair, nor in my bed. I am. My body is mine. I have common problems with all other people with disabilities, severe
    disabling illnesses, conditions.

    It’s the same old same old, that I’ve observed since I became disabled in the 1980s: refusing to accept us as adults, autonomous beings who know what we need/want.
    Perhaps a desire by those with power to hold on to it…It’s 2010 and the patronizing, dissing, dismissing of us, the disabled, won’t “fly” any more.

  3. In terms of practical and concrete input, you should seek to get a disability rights representative onto the (as of June 1) required ethics committees in New York.

    This is not built into the statute. But significant guidance indicates that such an implementation would be best practice. — Thaddeus Pope

  4. Jennifer,

    Thank you. I wish I could be writing longer replies today, but I am exhausted and still not finished helping with the preparations for Diane Coleman’s part in this conference.

    sanda,

    thanks as always. More later.

    TMP,

    Interesting suggestion, although I tend to be cynical when it comes to response an appeal to “best practices” will receive.

  5. Stephen, I know it took awhile, but the conference the Center for Practical Bioethics hosted in 2006 attended by NDY and a number of other disability advocates did result in a report to Congress in 2008: http://aspe.hhs.gov/daltcp/reports/2008/adcongrpt.htm

    Disabiity issues are presented in Section V of the report and three recommendations specifically dealing with disability issues are included in the final recommendations. In addition, I would commend to your readers Appendix D (a commissioned report on disability) and appendix G (comments by Adrienne Asch). Also you may not be aware that Gary Stein (Yeshiva Univeristy professor and author of the commissioned paper) has had his article accepted for journal pulication in the near future.
    Recently I had the opportunity to visit with Leigh Ann Kingsbury and requested that she review some web based advance care planning tools being developed by some physicians at Penn State. I apologize for not communicating directly with NDY about these follow-up activities.

    We have also kept in correpsondence with Lex Frieden, regarding his own writing and hope to invite him to an event the center is hosting this fall in memory of Nancy Cruzan.

    Finally, I am the son of a man who lived for 26 years disabled by a stroke and I served as his healthcare co-agent for that entire time (with my devoted mother who served as his caregiver). I can assure you that there are those of us who work in the bioethics field who “get it”. We may not be as vocal as those of you representing the activist element, but we are not sitting idly by doing nothing. Your work is important, and your message must at times be loud, but our efforts, though certainly more mainstream, may bear fruit someday as well.

    We hear you and we continue, in our way, to build better understanding for those living with disability and healthcare providers. We have a long long way to go, but we will not give up on the journey any more than my father did.

    John G. Carney
    Vice President
    Center for Practical Bioethics

  6. A few things come to mind.

    First, it always grates on me to see how much both “sides” of this issue buy in to the dichotomy of the disability activist community VERSUS the bioethics community. Setting up this grand tension virtually erases me (and others like me) who themselves have disabilities (or are somehow connected to crip town) and who study and teach bioethics for a living. Mine is not a hyphenated identity. Whether I am getting in line at 5am at an ADAPT action or rolling to teach class at 8am, I am the same me with the same values and the same commitments. I may be the exception rather than the rule, but I do think there are others who would feel quite alienated by this dichotomy that has been set up both by the conference CFP and by your blog post. No doubt, you have every right to object to how the disability community and our perspective has been dismissed by some of these particular bioethicists. That fills me with rage all day long! But, at the same time, I can’t help but object to the sweeping terms you use to characterize the profession as a whole. This approach itself marginalizes people from the discussion by completely erasing them (there are about 4 or 5 disabled/allied bioethicists who do really good work that has helped somewhat and another bunch that are in training).

    My other thought is that, maybe I am too much of an idealist (if I am it’s because of my activist disposition), but I do think the profession can be changed and non-disabled mainstream bioethicists (and medical doctors) can understand the disability community’s critiques. It’ll be a slow and grueling process but in the long run, the only way to win on these issues will be to change how doctors (and new bioethicists) are educated. I don’t think this is a hopeless cause and I do think that there are SOME bioethicists who want to engage the disability community in a more authentic way (especially the younger generation of bioethicists).

    I think it would be great if you and I sat down and tried to do better. I think our skills and experiences compliment each other and that we can trust that we are both fighting on the same side. Could we work together at some point (probably after I finish school and have a job with some institutional backing) to create REAL dialogue on these issues? Let’s talk about what such a meeting/conference would look like. How could we make it accessible to everyone (I’m not talking about shower chairs and ASL terps, but accessible to the grassroots of our community)? How can we have follow up and what would that follow up look like? Would it be a series of discussions? Would some kind of action be the aim of it or will talk itself produce the kind of change we need to see? These are just some of my questions and I do think they have answers.

    Looking forward to meeting you in person.

    –Joe Stramondo

  7. I’m hoping people awaiting publication of their comments will read this.

    It’s about 5:30 am and I’m getting ready for a long drive for a longer day.

    There are two long comments awaiting posting. They both deserve detailed responses – and I will post both – along with any others – by Monday sometime.

    I will not have email or internet access while at this event.

    Sunday I’ll be busy doing the things at home it usually takes me two days to do. –Stephen Drake

  8. To Joe – I am sorry for the delay on posting your comment. I haven’t returned to the blog since the conference.

    The good news is that we had some time to talk there – it would be nice to have more of it and at a different place. I am not at my best when I’m exhausted and actively avoiding many of the people in the surrounding environment.

    I agree that some people in bioethics may be educable – but public policy is racing at an ever-increasing pace. There really isn’t time to patiently educate some folks while public health policy makes our concerns moot – since established public policy is very hard to reverse.

    I’m not sure if I pointed this out, but Ouellette had the relationship between disability scholars and activists very wrong – at the beginning of the movement, many of the activists (especially around Berkeley) were scholars – and most of the scholars were activists.

    Currently, disability scholarship is almost totally divorced from disability activism. A handful of us working as activists have academic backgrounds and use those talents as tools for our own activism, but mostly don’t have time, money or energy for scholarly publications, conferences, etc.

    –Stephen

  9. To John Carney:

    Again, I apologize for the delay in posting and replying.

    I hope you take this in honesty, but as far as I can see, you and yours only “hear us” when we shout. If you really paid attention, I’d have expected to hear from you before now – at least in relation to the guardianship cases being handled by protection & advocacy in several states. These organizations – already understaffed and overworked – are having to work more and more to fight attempts to prematurely end the lives of people with intellectual disabilities. These attempts weren’t made until successful campaigning by “eol” groups changed guardianship statutes in most states.

    I check your site regularly and I see absolutely no sign of any recognition of disability issues or their relevance to bioethics. Your latest hire isn’t exactly encouraging either – one of the nastiest partisans during the Schiavo tragedy – and who used the fact that he was the father of a kid with autism to defuse criticism on an email list when confronted with his primary tactic of villainizing the disability groups (not just NDY) who had a different position in that debate than he did.

    But please give a call the next time you have a special event focusing on the special needs of special people.

    –Stephen

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