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.