Disability Rights Groups: Sacrificing the Individual for the Agenda?
What constitutes an acceptable life to a disabled person? Why is this question important? The answer may provide an understanding and basis for the many very important and also seemingly trivial decisions which must be made by and for that person. The decisions could involve medical procedures and treatments, education, employment, self-care and independence, marriage and parenthood amongst many other issues including the relationship to society and the world around that disabled person. So, who should set the criteria for the individual’s quality of life except the disabled individuals themselves? If the individual cannot communicate because of age, alteration of consciousness or other brain disorder, how should a decision be made about what should be understood as an acceptable quality of life for this individual? Will what is acceptable in one case be identical to what is acceptable in another case? And who should make this decision? Should it be a guardian, other family members, doctors, lawyers or the courts or some consensus of society? One element of society which has an ongoing interest in the treatment and “rights” of the disabled, has researched the issues and who have actively supported and vigorously broadcast their views and conclusions and demands to the rest of society are the disability rights groups. Note that I put the words rights in what are called scare quotes since the meaning is unclear and there is debate, certainly encouraged and supported by these groups, as to what are the rights of the disabled. In view of the close relationship of these groups, whose membership includes the disabled, to the disability issues, should it be up to the disability rights groups to set the standards or criteria that would apply to all disabled persons?
In an article written for the Perspective section of the September-October 2007 Hastings Center Report, Anita J. Tarzian writes about this issue beginning with views of what is meant by the term disabled. She then quotes what Nancy Mairs, a disability rights advocate, wrote in Mairs’ book “Waist-High in the World: A Life Among the Nondisabled”: “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.”
So, I put to my visitors the following question: as they explain to us their propositions, should disability rights groups ever sacrifice the disabled individual to the group’s agenda? ..Maurice.
In an article written for the Perspective section of the September-October 2007 Hastings Center Report, Anita J. Tarzian writes about this issue beginning with views of what is meant by the term disabled. She then quotes what Nancy Mairs, a disability rights advocate, wrote in Mairs’ book “Waist-High in the World: A Life Among the Nondisabled”: “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.”
So, I put to my visitors the following question: as they explain to us their propositions, should disability rights groups ever sacrifice the disabled individual to the group’s agenda? ..Maurice.
posted by Maurice Bernstein, M.D. @ 8:54:00 PM
13 comments
13 Comments:
Maurice,
As someone who has published a "perspectives" piece in Hastings, I know how little they demand of the authors of such pieces.
Nevertheless, this article is a poor excuse for the discussion you want to have. Read the commentary and you'll find that Tarzian doesn't actually quote any disability advocate or activist in regard to the Ashley X case - the quote she uses as her example of "sacrificing the individual" is from a *pediatrician*. (The Mairs quote has nothing to do with Ashley X and was written many years ago)
As someone who watched and read the coverage of the "Ashley debate," I looked hard for evidence of an informed and nuanced debate. I didn't find it. Instead, I found a debate dominated by members of the ethics committee who okayed this procedure, transhumanists furthering their own unidentified agenda while talking about "matching mental age to body size" (paraphrasing here), with the occasional rejoinder from Art Caplan. Disability advocates and activists were all but absent from the public debate.
Maybe instead we should be having a discussion about what an "informed and nuanced" discussion would actually look like? Sure didn't see it with Ashley X. --Stephen
Stephen, of course your suggestion about a discussion (or debate) on this blog about the behavior of all sides in the Ashley affair is very reasonable and, though I already have a thread on Ashley which didn't develop into a debate, I can set up one to proceed in an "informed and nuanced" manner on that specific topic.
However this thread has nothing to do with Ashley specifically but a particularly disturbing comment by a disabled person herself, Nancy Mairs, “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.” That could apply to both sides in any Ashley debate (though I don't find any formal organization outside of the disability rights groups) and that is what I would like to see discussed here.
Do those in the disability rights groups who do not support and those ethicists and physicians who support the approaches to treat or manage that were carried out on Ashley or on other disabled patients consider that their pronouncements to the public really represent their adgendas which trumps what actually and personally constitutes an acceptable life for the disabled person. Or do either group deny any conflict of interest? ..Maurice.
Maurice,
I'll post more on this tomorrow - here and on the NDY blog. My copy of Mairs' book has gone missing and a new one should be here sometime tomorrow. If memory serves, this quote is being used in a curious way.
And no matter how it's being used, it doesn't change the fact that the piece in Tarzian sets up a straw man and knocks him down. We *were* talking about Ashley X. What person was sacrificed here? Even operating under the highly questionable assumption that the operation was for "Ashley's" good, she *had* the surgery. Who was sacrificed?
Is the complaint that the Washington P&A had the bad manners to point out that the hospital violated state law when it performed the surgery without a court order? There are reasons for involuntary sterilization statutes - involving one of the more shameful chapters of American medical history.
Why should I answer a question (an accusation, really) that doesn't have a factual instance as its basis? That's an honest question from me to you.
By tomorrow, I'll have the context in regard to exactly what Mairs was referring to in that quote of hers. I hope you would agree that's important information to have. --Stephen
Stephen, obviously I didn't take the quote of Mairs directly out of her book but from Tarzian's writng.
Therefore, I would very much appreciate your access to the book and to identify exactly in what context Mairs made her statement since that would be very important in this discussion. ..Maurice.
Maurice,
I know.
You're operating under the assumption that Tarzian has made a fair argument here. I think I already raised a couple of points that challenge that assumption.
Hastings and other publications have featured pieces that have targeted disability advocates and activists before. Some of them are arguments that are fairly presented (meaning they are fact-based, even if slanted). Others are not.
The Tarzian piece falls into the latter category. And my main question isn't about *her* motivations, but the motivations of the Hastings editors in publishing such a weak piece.
Not that it isn't compelling to bioethicists *looking* for a reason to dismiss disability activists and advocates - but maybe that *is* the point, rather than the quality of the argument itself.
One reading of the Mair's quote is as a critique, more generally of a tendency to take action and make decisions in a way that does not consider the individual's contextual particularities and specificities. For example one's "principles" are often invoked and applied to all situations, regardless of their appropriateness to the particularities of the case at hand. A better way of proceeding, it has been suggested, is to consider one case at a time. I think Mair's sentiments are particularly useful, as it opens us a discussion about not only how ethics committees make their decisions, but also, how activists, such as ndy, critique them. Both NDY, and activism more generally, and ethics committees base their actions and arguments on principles that may not necessarily have a universal application. In deed, they probably don't.
I am not familiar with Tarzian's article, but I think the accusation that disability rights groups sometimes sacrifice the rights of the individual to advance their own agenda is a legitimate one. I am thinking specifically of the case of voluntary euthanasia, which the majority of disability rights groups and advocates are opposed to largely on the grounds that it feeds into the idea that life as a disabled person is not worth living. These individuals and groups understandably want the public to perceive and treat disabled people as equal to non-disabled people in every way, and there has historically been a mindset among some that disabled people are an unnecessary burden and should be encouraged to end their own lives. Under the Nazi's so-called "euthanasia" program (which was really mass-murder, not euthanasia), the disabled and those with mental illnesses were described as "lebensunwertes leben leben." literally "life unworthy of life." It is perfectly understandable that disability rights advocates would seek to counter this kind of thinking with the idea that not only are the disabled worthy of life, but life as a disabled person is worth living.
But they take it a step too far when they oppose the right of disabled people to determine for themselves whether they consider their lives worth living or not. Like many opponents of euthanasia or physician-assisted suicide, they often use inflammatory rhetoric, conflating euthanasia with murder and accusing advocates of an individual's right to exit this world in the manner of their own choosing of devaluing the lives of disabled people. While I would agree that we need to do everything we can as a society to improve the lives and acceptance of people with disabilities, for many people, life as a disabled person is a living hell, and that is perhaps especially true for those with severe chronic pain. It may not be politically correct to say that, and it may indeed be true that many who consider their lives a living hell would not feel that way if they got proper treatment, but the fact remains that a lot of disabled people do feel that way, even those receiving proper treatment, and no one should have the right to dictate to them that they should have to continue to endure what they consider to be unendurable. For myself, the knowledge that I don't absolutely have to endure this forever is a small comfort, but having the right and the ability to end my life in a dignified, responsible and painless way rather than having to go into the woods and die like an animal with a gunshot to the head, would be an enormous comfort and would empower me to take more chances with my recovery and my life, knowing that there is always an escape hatch if something goes wrong. For similar reasons, I advocate unrestricted access to cheap pain medications for anyone suffering with pain.
To deny people this right and the comfort of knowing that they don't absolutely have to endure a tortured existence based on some abstract principle of "ethics" or because it's contrary to some group or another's agenda seems entirely unethical and indefensible to me. In a free society, it should be an individual's right to choose their own fate, and to force a life of torture on anyone is one of the cruelest forms of tyranny there is. So I would ask that disability advocates continue to work to improve the public perception of disability, afford access to proper medical care and employment for the disabled, and to help disabled people learn to cope with their limitations so they can live better lives. but please let us define for ourselves what being disabled means, and determine whether such a life is worth living or not.
Stephen Drake, I wonder if you are comfortable with the evaluation of the issue regarding the needs and desires of the disabled and the disability group's view of ending life as an autonomous decision of the disabled all as described above by Hertz. Hertz's posting points to the question presented in the title of this thread. ..Maurice.
Stephen Drake wrote me e-mail with the response below and he will follow it up with additional reply shortly. ..Maurice.
Short version of reply is: A. It's not what Tarzian was attacking. B. The description
of NDY's position is distorted. We oppose the "fiction" that assisted suicide is
about "autonomy" - if it was about autonomy, all serious requests for assistance
would be facilitated - not just those requests of old, ill and disabled people.
It's discriminatory public policy. If people want to commit suicide on their own,
there's abundant evidence of the ability of people with all kinds of conditions to
do that by all kinds of means.
Stephen, what evidence or report are you citing when you claim that all sorts of people, not only the ill, the old and the disabled, are seeking assistance to die. I would like to read it.
Also, some might construe it as reckless your suggestion that "if people want to commit suicide alone there's abundant evidence of the ability of people with all kinds of conditions to do that by all kinds of means."
But, isn't the point that people seeking assistance to die are doing so because they don't want to do it alone?
With regard to the "ability" of people with all kinds of conditions to suicide by all kinds of means, what do you suggest that those who do not have the "ability" do?
In a sense here, your argument is ableist, insofar as it implies that people with disabilities are able-bodied enough to find their own means to suicide.
But moreover, what evidence are you citing with regard to your argument that there are ample means available for people to suicide? Is is stats refering to people dying alone from a drug overdose; dying along from carbon monoxide poisoning? From self-inflicted mutilation?
As I understand you, there is a tacit understanding of a need, under certain cirmstances, for assistance with dying, but you are saying that we can't help you, nor support you in your decision to do so, because our job, our cause,is to argue against it, on principle.
I think you have a hard job ahead of you in convincing us that your position, at least on some ocassions, does not sacrifice the rights of the individual to your cause.
As Moderator, please let me remind everybody including the last Anonymous that if you post as Anonymous, please identify your posting with some pseudonym or initials. It is important so that responses can be specific to a certain visitor and that the discussion becomes more understandable. Thanks. ..Maurice.
An article in today's Boston Globe seems to me pertinent to the current discussion here. Michael Kranish of the Globe staff wrote:"Two and a half years after Terri Schiavo became a celebrated cause among Republican leaders, the party's leading presidential candidates have expressed opposition to the way Congress intervened in the case, a sharp departure from past Republican strategy."
"...John Green, a senior fellow with The Pew Forum on Religion & Public Life, said yesterday that the debate, the Schiavo case in particular, has proved far more divisive than abortion among religious conservatives.
'There was an enormous negative public reaction to what was seen as overreaching by the Congress and the president,' Green said. 'The sense of overreaching was very widespread, including among many Christian conservatives.'
Polls taken at the time [of the Schiavo publicity] indicated that 70 percent of those surveyed believed it was inappropriate for Congress to get involved in the case, and 67 percent thought elected officials became involved to gain political advantage."
Go to the link for the entire 2 page article. ..Maurice.
Stephen, I don't know if your remarks were directed at me or another poster, but I did mention I know nothing about the Tarzian article and I was unfamiliar with your organization until you mentioned it, so I am not attempting to distort your position. You might consider a statement on where your organization stands and why and then we can comment on that.
"If people want to commit suicide on their own,there's abundant evidence of the ability of people with all kinds of conditions to do that by all kinds of means."
Sorry, but that's a rather cavalier comment you might want to rethink. It suggests a lack of concern for those who have been driven to attempt suicide through less than ideal means. The whole idea behind physician-assisted suicide or euthanasia is that most people do not wish to commit suicide on their own, for the simple reason that most of the means available are not reliable (some 90 percent of attempted suicides fail), are extremely painful or terrifying, and often leave very gruesome results in their aftermath. Many disabled people lack the ability to suicide with those "available means." When people attempt suicide using these means, it is because they lack a better way of doing it. The safest and most reliable means of committing suicide is through the use of drugs such as are used in the Netherlands, all of which are illegal or near impossible to obtain. In addition, many people are unable to commit suicide because they have life insurance policies they would forfeit by doing so, and merely discussing a desire for suicide can get you involuntarily committed in most states. It is disingenuous to suggest that people already have ready access to the means to commit suicide; they do not. You may imagine that denying someone the right to die in a guaranteed and reliable way with as little pain as possible is somehow noble, but it most certainly is not when you force that person to attempt suicide by something as horrific as a gunshot to the head or jumping, or to live a life of excruciating pain.
Even in a civilized country where pain treatment was readily and plentifully available, there would still be people whose pain could not be properly controlled with the available technology. Additionally, the suffering of being disabled is not limited to just physical or even psychological pain. Sometimes, people just can't stand the whole lifestyle and everything else that goes along with being disabled. To rob people of this choice is to rob them of a large measure of their autonomy. This is an indesputable fact. This does not mean that granting people the right to assisted suicide therefore means they now have full autonomy, and I don't think that anyone who has thought these things through could make that argument. Certainly, many people with chronic pain often desire to commit suicide because they cannot get their pain treated properly, and in those circumstances it cannot be said that the decision to commit suicide is fully autonomous. But that doesn't alter the fact that denying them this option robs them of autonomy, or that is is therefore permissible to do so. The irony is that robbing people of the right to treat their pain by any means necessary as well as robbing them of the right to a dignified and painless death forces people into life situations they often find unbearable, and are really two sides of the same coin: the infliction of pain and distress on another humam being by outside forces exercising control in an area that should be left to the individual to decide. What we have is not a dichotomy betwen autonomy and no autonomy, but between partial autonomy and no autonomy.
No one should have the right to deny someone an easy exit from this world if that is what they desire. Your efforts should be focused on ensuring that the factors which would drive people to want to die, such as undertreated pain, are addressed and that people receive proper medical care. Denying people the right to die doesn't do a damn thing to improve their treatment, and may even make it worse. The criminalization of assisted suicide means that doctors are even more reluctant to treat pain properly due to fears of being prosecuted for "double effect" overdosing of a patient whose pain they would otherwise treat more aggressively. The result is that doctors will often undertreat pain to stay on the safe side, with the effect of increasing demands for assisted suicide. This leads to a greater likelihood of patients seeking death as a form of relief while simultaneously robbing them of that option. The simple fact is there are many disabled people like myself who want the option to die in the manner of our choosing, and I consider it an infringement on my liberties to be denied this by anyone, regardless of their motives.
Post a Comment
<< Home