This particular entry is difficult to write, since I’ll be referring to an article that is generally unavailable to the public. But it’s important enough to take a crack at it. I suspect that a number of readers of this blog will find a way to get the article one way or another. (smile)
For awhile now, the Hastings Center has been making a quiet outreach to the disability community. A few players from the Center are involved in an event that will take me away from my computer over the weekend. I’m dubious about the value of the event. Part of that is based on past experience. I’ve been involved in two such events before, involving “dialog” between bioethicists and disability advocates. Both were dead ends – no followup or follow-through. And some of the same people in this event were involved in those events.
Anyway, at the same time I’m preparing to have a polite exchange of ideas (or something like that) with some bioethicists, a colleague alerted me to a particularly nasty attack on the “disability rights agenda” published in the current issue of the Hastings Center Report. It makes me wonder if the author was inspired by social conservatives’ attack on the “Homosexual Agenda.” It certainly reads like it could be. (note: in my circles, that “agenda” is generally referred to as “gay rights” or simply “human rights.”)
The article in question, “Disability and Slippery Slopes” is the “perspective” piece in the current (Sep/Oct 2007) issue of the Hastings Center Report. I can’t share much of it or link to it. The journal editors have wisely left this piece unavailable as an online offering to the general public.
Anita J. Tarzian, the author of the piece, does some “interesting” things in the course of her essay. Focussing on the “Ashley X” debate, she challenges the question of the surgical alterations to the young girl in question as a “disability rights” issue. She selectively defines “disability rights” issues through the social model often applied to people with physical disabilities. She also refers to the Illinois People First website and makes the claim that the statements made about what people with disabilities need and want exclude people with the assumed intellectual impairments of “Ashley X.”
She pretty much suggests that the “Ashley X’s” of the world should be culled from the “disability herd.” It’s the old – “you can’t speak for them because they’re too disabled to be disabled” gambit. Guess she should tell organizations like The Arc and TASH that they’re wasting their time.
Never in this article does she actually quote actual activists in regard to “Ashley X” – she instead quotes a pediatrician from an excellent Salon article on the issue, although she disregards the questions raised about the ethics committee process in the same article.
Incredibly, she quotes Nancy Mairs, a writer and disability rights advocate to make a point:
People who act on principle are likely to sacrifice the individual for the agenda, which is frequently shaped by their own, often deeply buried, presuppositions about what constitutes an acceptable life.
Tarzian left out some important context. Mairs was referring to Jack Kevorkian in that quote – a person willing to sacrifice individuals to his agenda. It’s part of an even broader discussion about the interplay between personal beliefs about choice and the consequences of certain types of public policy – and how they can come into conflict.
Tarzian follows up the Mairs quote by saying that objecting to the ‘Ashley Treatment’ “sacrifices Ashley for the disability rights agenda.”
Say what? How was Ashley “sacrificed”? By the time anyone knew about this, she’d had the surgeries. If, like Tarzian, you thought the surgical alterations were ethical and acceptable, there is no reason to whine here. Is Tarzian complaining because Washington Protection & Advocacy had the bad manners to investigate and announce the hospital had broken the law?
Finally, Tarzian calls for “an informed and nuanced public debate about disability, quality of life, and health care resource allocation.” The implication, of course, is that somehow the “disability agenda” interfered with that.
Let’s get real. The public discussion was dominated by members of the ethics committee who sanctioned these surgeries, transhumanists (unidentified as such) talking about the esthetics of matching “mental age” to body size, and a host of ethicists supporting the so-called “Ashley Treatment.” Art Caplan stood out as the one ethicist with real time allotted in the media who criticized the procedures and the ethics committee.
Tarzian got one thing right. There wasn’t anything resembling an informed or nuanced debate in public about the so-called “Ashley treatment.” But disability rights advocates were barely present in the public discussion. Lay the blame where it belongs – at the feet of the ethics committee members, transhumanists and other talking heads who tried to make the issue as simple as possible for public consumption.
This also doesn’t exactly enhance my expectations for the upcoming meeting. This article is far below the standards one usually expects from the Hastings Center Report, even in the “perspectives” section. Disability rights activists and advocates can deal with criticism – but it’s reasonable to expect criticisms to be fairly constructed, based in reality, or at least rational. Tarzian’s article is none of those. –Stephen Drake
Sunday, Oct. 21 – Addendum: Wesley Smith has more to say about Tarzian’s article. Read it here.
There won’t be any posts on the blog for a few days due to a combination of professional and personal obligations. I’ll be on the road for the next couple of days. Look for new entries by (hopefully) Thursday, October 25th. I also beg the patience of those who post comments as they wait a few days for them to appear.
I forwarded that critter to Wesley J. Smith to see if he wants to comment on it.
James Watson could have written that piece of tripe.
And, as it turns out, Wesley does indeed have more to say about this. I’m putting an addendum and link on the blog entry.
I’m not sure how your representation of ethics committees as less than credible, in general, is useful or productive. Its seems very divisive to me, and rather than foster transformation, it works against it. Isn’t it the case that ethics committees and disability rights organizations are mutually dependent upon each other for change and transformation in the treatment of people with disabilities? And in any case, there are a number of ethicists at the Hastings Center whose work fabulous. Alice Dreger is but one amongst a host of others. Hinde Lindemann, is another, and also Nancy Berlinger. But also, your suggestion, in closing your post, that this article is not “based in reality, or at least rational,” and your charge in your email of this morning that the article is a “vicious and incoherent rant,” is, in a sense, itself a form of ableism, as it asserts that work, in order to be good and credible must be reflect the masculine and ableist values of rationality and coherence. It is one thing to be critical, but must criticism be accompanied by contempt in order to be effective?
Stephen, when you get the chance and if you know, I’d be interested in knowing where or when Nancy Mairs said that about Kevorkian. I’d like to read it in full context.
Thanks.
Thanks Not Dead Yet for unpacking the often contorted positionings of those who refuse to accept that Ashley X was a person with full rights that some “committee” abrogated.
Dear “anonymous,”
The critique of the ethics committee was the work of Washington Protection & Advocacy. As for the mutual dependency between ethics committees and disability advocates/activists, there is no sign of real movement for wanting change on the part of the many institutions that have ethics committees. Historically, hospitals and the medical profession respond to public pressure.
I understand that Dreger has done some very good work with transgendered folks and with some other groups. I hear good things about Lindemann as well. I’m much less impressed with Berlinger. Nevertheless, they represent a small part of the bioethics world.
As for being “ableist” – it was Tarzian who was attempting to carve out a part of the population as being – to put it simply – too disabled to be disabled.
As for rationality and coherence – I expect, especially in a journal, to see charges made with *some* basis in fact. This read more as a sloppily constructed excuse to attack disability activists and advocates – which the Hastings Center decided to publish.
I wasn’t aware that it’s sexist to expect those things from a journal. As for coherence, I don’t see the ableist part – I know many people with cognitive disabilities who have difficulty with spelling, sentence construction, etc. It doesn’t prevent them from articulating very powerful arguments. –Stephen Drake
Kay,
I sent you email. For anyone else who is interested in looking it up, it’s from Mairs’ “Waist-High in the World,” published in 1996. The specific essay is “Freeing Choices.” –Stephen
Stephen, I’ve returned a couple of times to the bioethics discussion blog to read your reply to the last two posts – but you haven’t yet. I’d like to read a response from you.
Amanda
Amanda,
I’ll try to get back to Maurice Bernstein’s blog when I can, but it’s difficult to do so right now. Maurice actually has an idea of some of the issues taking my attention right now.
To make it short – I spent part of this last week at a bioethics event. Other parts were spent travelling back and forth between Chicago and Kalamazoo, MI – my partner’s mother had open heart surgery yesterday.
My computer access is limited. I am wiped out by schedule disruptions and *driving* – which is a real energy zapper. When I do get access, my first priority is to get to my email and also to keep this blog up to date.
On top of that, I have about four days to get ready for my very first presentation as a self-identified and diagnosed person with nonverbal learning disabilities at the NLDA conference.
I’ll get back to that blog, but there are other things higher on the priority list demanding my limited energy right now. –Stephen