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Tuesday, January 12, 2010

Terri Schiavo and the Politics of Disability

Like most people, I followed the Terri Schiavo case when it was splashed across the national news. I was not impressed with anyone or any group that spoke out. I was even less impressed when legislators got involved. To me, the case was a family matter, one that should have been resolved by those that knew and loved Schiavo. If blame needed to be assessed, and we Americans love to play the blame game, it should have been pointed squarely at the family for their inability to put aside their differences. In short, I think the case never should have become a media and political circus.

I have been thinking about the Schiavo case for two reasons: first, I am struggling to get through the Montana Supreme Court decision in the Baxter case. I am not a lawyer and reading through the 68 page decision is an exercise in frustration. Second, a book has been published, The Case of Terri Schiavo: Ethics, Politics, and Death in the 21st Century edited by Kenneth W. Goodman. The book consists of ten chapters written by different scholars and includes a fascinating chapter by Schiavo's guardian ad litum and a particularly useful appendix that has a timeline of key events. The scope of the book is impressive and for those interested in first hand accounts of what took place I highly recommend the book with the proviso the entries all have a particular point to make. Politics and passion abound even after the passage of time. Of great interest to me was the Introduction by Kenneth W. Goodman and the chapter, Disability Rights and Wrongs in the Terri Schiavo Case, by Lawrence Nelson. Both Goodman and Nelson are severely critical of the disability rights activists involved in the Schiavo case, notably Not Dead Yet. Goodman decries the fact the the Schiavo case became the "cause celebre by the militant wing of the disability rights community". Goodman did not consider Schiavo to be disabled. He wrote that "to regard Schiavo disabled was a perverse disservice to the millions of people who need assistance with tasks involving moving, hearing, seeing, even thinking. With assistance, they can accomplish and experience many things". Gee thanks! I guess with assistance we crippled people can accomplish amazing things! Obviously Goodman perceives disability as being nothing more than a physical or cognitive deficit and those with a disability in need of assistance. He acknowledges and quickly dismisses the social dimensions of disability and disability based prejudice. A medical model of disability is accepted without question but what seems to annoy Goodman the most is the lack of rigor among disability activists. He considers the position of disability activists in the Schiavo case flawed on three grounds:

1. They had no coherent definition of disability.
2. Disability activists actions were politically motivated. Disability activists also made alliances with conservative groups that had expressed no prior interest in disability rights.
3. The actions of disability rights activists reduced the rights of people with a disability who wanted to refuse burdensome treatment.

Goodman is correct in maintaining that the Schiavo case created strange political alliances. These alliances, particularly between disability activists and conservative Christians, exist to this day and are highly problematic in my estimation. As I have already noted it is these alliances that prevent me from becoming more active in the movement against assisted suicide. But what bothers me is why Goodman cannot understand why the definition of disability must be precise or in his words coherent. Disability is an elastic term, its definition broad by design, and this has not changed legally in over 30 years. Like Goodman, in Nelson's chapter on disability and the Schiavo case he struggles with the idea she was disabled. He considered the position of disability rights activists inherently flawed because of this and based on ideology and their own convictions. Thus Nelson does not even begin to grasp the points made by Diane Coleman of Not Dead Yet for instance. While Nelson, like Goodman acknowledges prejudice exists against people with a disability and condemns such behavior but considers it to be apart from from individual cases like Schiavo. In his estimation it is not wrong to forego medical treatment in any individual case involving a disabled person. In a world free of bias I would agree with Nelson's position. However, we live in a world where people with a disability existence is not valued, they are likely to be poor, under or not insured, socially disadvantaged, and with far fewer options than a person without a disability. Accordingly, it is disingenuous to characterize Coleman's claim that some people want to kill the disabled behind closed doors as being "bizarre", "unsupported by evidence", and "irresponsible". The fact is people with a disability have often been subject to questionable medical treatment, forcibly sterilized during the Eugenics era, and considered "dogs" by contemporary insurance companies. A pattern of abuse is well established as is a long history of devaluation.

Nelson concluded his chapter by writing the disability activists involved in the Schiavo case were shrewdly practical and political. I agree the involvement of disability activists was political. This does not mean their ultimate aim, equality for people with a disability is wrong as I am all for creating a new and positive view of disability in American society. What Goodman and Nelson do not consider or want to write about is the shadowy history and tenuous place people with a disability have in American society. When the Schiavo case was in the news Iowa Sen. Tom Harkin, a Democrat and proponent of disability rights told reporters, "There are a lot of people in the shadows, all over this country, who are incapacitated because of a disability, and many times there is no one to speak for them, and it is hard to determine what their wishes really are or were. So I think there ought to be a broader type of a proceeding that would apply to people in similar circumstances who are incapacitated." I for one think this is not only a good idea but in the best interests of all people, those with and those without a disability at the present time.


Claire said...

This is excellent. I have never been able to make heads or tails of the Shiavo story. All the reporting was heavily biased in some way...some painting the husband as a cold-blooded killer, others pointing fingers at the parents...I had no idea, in fact, as to what the actual condition of Terri herself was. I agree wholeheartedly that this was a family matter that should have been addressed quietly.

If Terri wasn't disabled, what was she? I suppose "comatose" doesn't count for disabled, yet those with severe cognitive and physical challenges are often lumped in, legally, with comatose people. Hmmm.

A very good post. Some people will never understand how disability cannot bear a hard and fast definition...yet I see the connection between Terri's situation and the dangerous position of the disabled in the medical system very clearly.

william Peace said...

Claire, Thanks for the kind words. I am by no means an expert on the Schiavo case. See Not Dead Yet for their activism and views in this regard.
According neurologists Schiavo was in PVS and had no non-autonomic functions. In Goodman's opinion this separated her from all people with a disability--she was permanently unconscious. He wrote "by diagnostic definition, Ms. Schiavo could accomplish nothing, experience nothing, do nothing. Moreover and alas, she would never have been able to. This would be a direct insult if directed at someone with a bona fide disability". This may be an accurate assessment of her cognitive function but not address her status as a human being. Such quotes liter the text and makes me wonder how Goodman, the founding director of the bioethics program and professor of medicine at the University of Miami, can think this way. Your point out that some people will never understand why disability defies a simple concrete definition is a good one. Perhaps this is one good thing that could come out of a discussion of the Schiavo case years later--namely people will indeed see the dangerous position of people with a disability and the way they are treated in the the medical system. Perhaps then they will appreciate why disability as defined is an elastic concept.

Emerging Voice said...

Having a son that requires nutrition and hydration through a feeding tube, I find the Schiavo case upsetting because on the one hand, my son barely functions above Terri, so having a definition of disability might place my son outside an acceptable domain where infanticide or euthanasia is unacceptable since he is not in a PVS. But, if disability is defined in some way where my son and Terri fall into the same category, such issues as education and funding for services could ultimately be jeopardized.

As his mother, I would maybe like a definition as to how his condition/state is different than Terri's because it is different. What I find alarming is something that Harriet McBryde Johnson wrote about when she was automatically placed in a "handicapped" classroom, crips and droolers alike when she began school. So, if we start making definitions, people will be placed in inappropriate settings in both directions.

My point here is that I completely understand why the author wants to say that Terri is not disabled but in a PVS. If I didn't feel it so vehemently, I would find it hard to make an argument as to my son's deserving of treatment, care, and services. Of course, that goes both ways, too. And as far as a person of sound mind creating a medical directive in case he/she ends up in a PVS and wants to not be given life sustaining care, I believe that should be followed. Can we have it both ways? And if we can, could a definition be helpful?

Excellent post.

Laura(southernxyl) said...

"the founding director of the bioethics program"

I have come to view the word "bioethics" with deep suspicion.

The problem with Terri's family making decisions for her was that they did not agree. Her parents wanted her fed and hydrated, her husband wanted food and water withdrawn, and there is no middle ground there. In such a situation, the courts have to get involved. In my humble opinion, this was a case that needed to err (if error it was) on the side of life. Whose sunshine was Terri's continued existence blocking?

william Peace said...

Laura, Like you, I have been suspicious of bioethicsts and the work that comes out of the field. Smart people have a penchant for using their intellect to justify all sorts of behaviors and treatments that are questionable at best (think the Ashley Treatment). But as I write these words I am working at the Hastings Center, a bioethics think tank, and am impressed by the scholarship produced and diversity of opinion. Why they are even tolerating my presence so they must be open minded. As for Schiavo, the family had to find a way to work together and find a solution. In my estimation this is what 99% of families do.
Keeper, I cannot tell you how many times people have assumed because I am paralyzed my cognitive functions is similarly impaired. For example, at least once or twice a year a waiter or waitress will ask me if I can read. This is so wrong I wonder how a person can think such a thing. You can try to have it both ways so to speak. And I too understand why the author did not consider Schiavo disabled. But she was a human being and even if she was in a PVS deserved to be treated as directed by her family. The problem was not Schiavo but rather her family. Yet the issues raised are complex and make us think about life and the conditions under which we want to continue that life. This should be self directed but doctors play a huge role and they are as prejudiced and flawed as any other human. I for one consider people with a disability at great risk for being pushed into choosing death over life as our existence is not valued. This is something I cannot get past when I think of Schiavo, the end of my life, and all other people with a disability.

Anonymous said...
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Anonymous said...

Terry Shiavo's family members were offered a menu of what to think. Then their "positions" were published. If they had "thought" things not on the menu these things would not have been published.

The whole business amounted to smoke and mirrors in order to let in an unsure era surrounding euthanasia in hospitals. How else to get young doctors and interns acclimatized and desensitized? (I mean these are rather "thick" people). It was a timing i.e. political issue.

When there's a debate on something it's as good as doing it. The line has been crossed.

The Untoward Lady said...

As a transgender person, I have a lot of misgivings about the idea of my sovereignty over my own body being placed in the hands of my family members. The whole premise of placing control in the hands of family members rests on the assumption that the family is in the best position to know the wishes and needs of the individual and are inclined to act on these wishes, regardless.

They are not. I feel the history of my transgender brothers and sisters being forcibly detransitioned by family members after accident and disability have stripped them of their ability to defend themselves speaks for itself.

As much as I love and feel I can trust my own family, I would still feel much more comfortable with my future placed in the hands of a well constructed system of justice than at the whim of those who love me (or not, as the case might be for others).

The Untoward Lady

william Peace said...

Untoward Lady, Thank you so much for y our comment. The history of transgendered people is shocking to me. The medical establishment and society in general is ill equipped to handle those whose fender is not obviously male or female. As such, I think there is much for people with a disability to learn from this history. More to the point, I did not even think of people such as yourself and what happens when faced with end of life issues. I can completely understand why you would have more faith in the justice system. Excellent point and thanks for making me think in a different way.

Claire said...

I have to say I agree with Untoward Lady on this....but there has to be an emphasis on "well constructed" system of justice. The judicial system can be more open to various views...and is more likely to take many perspectives into consideration, whereas doctors think like doctors and family can act out of grief/stupidity/self-interest.