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 However, to use the terms "Special People, Special Issues" is so far out of date it boggles the mind.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.”
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.
16 comments:
Bill this is downright frightening!
Bill: I am a clinical ethicist and a reader of your excellent blog. Two thoughts re your post about this conference (which I also did not attend).
1. Your self-professed "naive hope" is anything but. Such an inclusive and constructive dialogue regarding disabilities, quality of life, and the right to die is LONG overdue. There is indeed common ground to be found and balances to be struck. But not without openhearted, openhanded conversation. I welcome this. Alas, I am a 'working stiff' ethicist and not an academic so my own opportunities have been limited.
2. While still a regrettable title, Thad Pope clarifies the rationale behind the use of the word 'special'at his Medical Futility blog. (Pope) "The potentially questionable session title “special people” is readily explained by the fact that the panel discussed not only the disabled but also another vulnerable populations, prisoners."
Agree or disagree, I always appreciate your intelligence and passion with regard to the experience of disability. I have learned a great deal and it continues to inform my practice.
Bill, I think that many organizations would better involve a disability rights perspective if they could readily identify a (1) circumspect and (2) informed representative.
Suppose you have a room of M.D.s. Where would they go to identify and locate potential representatives?
If it is not now easy, perhaps a preparing a web, PDF, Linked-Ib, etc, resource might be in order.
Thaddeus, Perhaps I am misunderstanding you. Are you stating on point two that there are no informed representatives within the disability rights movement? On point one, circumspect, does this mean polite or perhaps professional? I would suggest there are many people with a disability that work squarely in disability rights that could be considered informed and circumspect. I thought when I gave my talk at the ASBH I was polite and professional. I find it hard to fathom I am not singularly unusual. As to where a room full of MDs would find a person they could contact the AABH, the Hastings Center, ADPT, Not Dead Yes, the Disability Rights and Education Defense Fund, and many other organizations.
Ron, I agree a dialogue regarding disability end of life, quality of life etc. is long over due. The hard part is find common ground as you put it. I find Pope's reasoning weak at best. Anyone tangentially associated with disability rights would have objected to such a title. Does it really take a leap in logic to title such a session "Vulnerable Populations: Issues and Concerns"
(Bill Peace) "I agree a dialogue regarding disability end of life, quality of life etc. is long over due. The hard part is find common ground as you put it."
One suggestion: disability rights advocates volunteering to serve as community representatives on hospital ethics committees and perhaps even assist with case consultations.
HECs need increased transparency and would benefit greatly from having direct access to someone with expertise on living with disability. Conversely, disability rights advocates might similarly benefit by having some of their more negative beliefs about bioethics softened and perhaps even changed. Collaboration usually beats the hell out of philosophical debate - at least when it comes to bioethics at the bedside.
Just a thought.
Ronn, I have tried to do this, volunteer to be on hospital ethics committee. Been turned down cold three times. Apparently my presence would be unsettling to others and my focus too narrow. Your point about the collaboration is spot on. Wish I could put this on action.
"I think that many organizations would better involve a disability rights perspective if they could readily identify a (1) circumspect and (2) informed representative."
I've been trying to re-frame my reading of this statement, but I keep coming back to my first impression, which is that it paints the majority of disability rights advocates as 1) intellectually out of their depth in a milieu such as "a room full of MD's" and 2) insufficiently deferential to these presumed intellectual betters.
As a health care professional who isn't disabled, I think I'm fairly well-positioned not to take such a statement personally; yet, I can't shake the sense that this whole line of reasoning is driven by a respect imbalance. Of course, it isn't unusual for activists who have a personal and emotional investment in a cause to be seen as less informed and reasoned than the cooler heads who have less at stake. I would hope, though, that professionals in a field like bioethics, where teasing out objectivity from bias is the proverbial bread and butter of the endeavor, would be able to see past this way of discounting perspectives that are, in fact, crucial to the conversation. It would seem like a reasonable rule of thumb that if there's nobody in the room whose perspective makes others uncomfortable (otherwise identified as not being sufficiently "circumspect"), then somebody important is missing. In terms of locating potential contributors with the desired depth and breadth of intellectual background, even my limited exposure to the world of disability advocacy suggests that such individuals are not in short supply. Putting the onus on them to present themselves humbly with resumes in hand, rather than recognizing the importance of seeking them out, comes off as a little disingenuous.
Oh, and "Special People, Special Issues"... seriously?? Ummm... PBS called... they want their 1970's Mr. Rogers episode title back...
Lynn: You make several excellent points, especially regarding meta-bioethics. Let me only add that having worked with Thaddeus Pope on multiple occasions and being familiar much of his writing, I can say that he has been a vocal and articulate critic of the insularity and 'group think' tendencies of ethics committees and has championed external review for intractable end-of-life conflicts.
Bill: RE your unsuccessful endeavors to join a hospital ethics committee, allow me to reverse Groucho Marx's famous line: I don’t want to be hospitalized at any facility that wouldn't have you as a member of their ethics committee. You're a professor of cultural anthropology and a writer, plus you've been recently published (and lauded) in the Hastings Center Report and presented for the ASBH. You are hilariously overqualified to serve as a community representative on any hospital ethics committee in the U.S. That a hospital might have some initial reservations about your disability advocacy work is perhaps understandable, but given what you have to offer beyond your personal and professional experience with disability, this concern would seem a trifling one and easily quelled by a simple conversation.
I think that I must clarify what I meant by "circumspect."
I think the concern of many groups, who would like to invite but do not invite disability rights participation, is that the disability rights representative will be categorically opposed to much of the status quo (e.g. advance directives). This would be far too disruptive for the day-to-day work of entities like hospital ethics committees.
I am not saying that this would necessarily happen. Bu this is the perception. What entities like hospital ethics committees seem to be looking for is someone who understands and even accepts 95% of dominant bioethics principles, but can identify and express caution in some specific cases and applications.
Thaddeus, I hope you take the time to read Lynn's comment. At a fundamental level there is the power imbalance between disability activists and bioethicists. In refusing or choosing to include disability activists bioethicists are acting as a gate keeper. An argument could be made bioethicists are elitist. The presence of disability activists might be uncomfortable initially but I have no doubt over time a balance could be established. You will never know until you or someone else tries.
Lynn, As always your comment gets to the heart of the matter. Cannot thank you enough.
Ronn, In my estimation hospital ethics committees are loathe to include an outsider such as myself. The fact I have a disability makes me even more unwanted. I suspect people with a disability are thought to be a one trick pony--narcissists who only care about themselves. Of course this is not true. Your Groucho Marx connection was apt and gave me a chuckle.
Thanks, Bill. I appreciate the chance to come here and process ideas about such interesting and important issues. Dr. Pope's comment made we wonder - is it true that many disability advocates object to advance directives? I hadn't heard that before.
Lynn, Yes, many people have reservations about advance directives--it is not just people with a disability. I am torn on the issue. I think advance directives can be useful if the person writing them puts some serious thought into what their wishes are. I also think people need to discuss the advance directive at length with family members. In my experience precious few do this.
Thanks, Bill.
Absolutely, I've seen how big the disconnect can be between the intent of an Advance Directive and the ability to apply it to an unfolding reality in any useful way. (I'm seeing this play out with my 100-year-old stepfather right now, in fact.) I just wasn't clear whether there was a disability-specific issue with Advance Directives.
I wonder if anyone has done a study comparing the generalizations that individuals are willing to make on these documents with the interventions they would choose when presented with very detailed case-study type situations. (It seems as if this must have been done, no?) I'd suspect that the deductive and inductive approaches would not necessarily converge upon the same decisions. As you say, that's why the proxy portion of the directive is really the most important, and why it needs to be supported by thorough discussion with those who are given that responsibility. But all of that seems more-or-less orthogonal to disability issues, to me, unless I'm missing something. (Always very possible :-)
If I had a few hours, I could summarize some of the disability opposition to advance directives.
But let me make a slightly different points. Disability advocates are very actively and visibly opposed to aid-in-dying. But the risks of coercion, manipulation, etc. are far bigger in the passive (withhold, withdraw, forgo) context.
Many Catholic theologians are opposed to POLST for this reason. It seems that disability advocates should be too -- to the extent they are not now already opposed to advance directives and POLST.
It is my understanding that the central concern with advance directives (living will/POLST in particular) is about the how 'quality of life' is determined - a concern that also extends beyond the disability rights community.
With directives, quality of life is assessed prospectively (and thus potentially erroneously) by individuals and subjectively by physicians. My understanding of the disability perspective on AD's is that while it may be okay for informed individuals to limit their own medical treatment, the cumulative effect of advance directives has been to skew the medical culture's understanding of what living with a disability (even an extremely severe one and/or multiple ones)can be. It is extremely difficult for anyone to determine whether or not he/she would want to live with XYZ condition unless they have access to individuals (and especially) resources to present a viable choice.
Closely related to this issue is the challenge of determining a terminal prognosis for individuals with ALS/Parkinson's/Alzheimers/CHF/COPD... That is, when do these conditions cease to be medical disabilities and actually become terminal events? This issue needs more attention and discussion IMO.
I am neither disabled nor am I affiliated with any disability rights organization, and I am obviously generalizing here. Bill and other readers, please feel free to correct or augment my interpretation.
Ronn, I see advance directives as the start of an on going discussion over end of life issues we Americans are unwilling to enter into. This is a much larger cultural problem than simply an advance directive. As best as one can in a comments section you hit the salient points.
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