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Thursday, October 29, 2009

Democracy for All but the Crippled

I have the legal right to vote as does every other American. I do not vote in my town. Why? The polling place is not accessible. It never has been and I doubt it ever will be. Thus I vote a few towns away. This is no big deal for me. I own a car and am willing to drive a few extra miles. What's the harm? This is the harm: I am the only resident that cannot vote in my own town. This bothers me. It does not bother anyone else. I know this for a fact because people have told me this. The level of ignorance at voting time is stunning. In 30 years I have never seen an accessible voting booth--not once. Sure I see little blue wheelchair signs but they all point to booths that are 40 years old and are not modified in any way. Worse, I have been questioned by poll workers and voters as to whether "someone in my condition" has the right to vote. More than once, fellow voters have suggested I should not be allowed to vote as there must be some sort of "cognitive minimum requirement". I have had poll workers volunteer to pull the handle in the booth, a direct violation of the law. I have had poll workers offer to enter the booth with me. Another violation of the law. Suffice it to say, when I vote ignorance and architectural barriers are the norm. And this is in the wealthy suburbs. What I wonder happens in poor and rural areas where access surely is a greater challenge? The answer to this question appeared in a recent report published by the U.S. Government Accountability Office (GAO). It is obvious the barriers I encounter are the norm nationwide. 27% of polling places in the 20008 election were accessible. Let me put that in headline form:


This is a national disgrace. Did this report resonate with let's say the New York Times, Wall Street Journal or other major publications? No! Did the national television news media report about this? No! Did CNN use this story as a filler? No! Did news pundits on the radio mention it? No!

Are we living in 1954 or is the year 2009? Was the ADA not passed 19 years ago? No wonder I feel about as welcome voting as a black man did during the Jim Crow era. Imagine if you will we are not discussing wheelchair access but racial segregation.
Imagine if I were black and not disabled. Imagine a sign that stated "whites only" outside your local polling place. I bet a riot would ensue. Police would be called and the national and local media would be out in force. But we are not talking about racial segregation. We are talking about the purposeful segregation of some 54 million Americans with a disability of some sort and about one or two million people that use wheelchairs. These people, people like me, have the right to vote. More than this inalienable right I would hope we have the support of the vast majority of our fellow Americans. But this is not the case. Access and inclusion is not valued, well, it is valued as long as it does not cost anything. I know this because someone like Governor Paterson, a man with a disability, thinks access is important but only if it is not too costly. I wrote about this last September. The GAO report only emphasizes this fact. But don't trust me. Read the GAO report for yourself. You can find a really detailed 47 page report that every American should be ashamed of.

Voting, we are taught, is fundamental to our democratic system. Federal law requires polling places to be accessible to all voters with a disability. The federal government knew the lack of access was rampant and in 2002 Congress enacted the Help American Vote Act of 2002. This act required polling places to have at least one voting system accessible to people with disabilities. This law is great but will only take us as far as it is enforced and socially accepted. Based on my experience as a voter for the last 20 years there is no desire to enforce the law. What the law states and reality are diametrically opposed to one another. I only need to look to and thank Governor Paterson because he made it clear there is no social demand for access. Such access is too expensive. This makes me furious. I am ashamed of my fellow Americans. I am ashamed of my town. I am ashamed of public schools that teach one thing and do another. I feel very alone today and I know why. I do not share and have not ever shared the rights of those that are bipedal. Surely the most resistant to this sort of thinking cannot dispute the facts--only 27% of polling places are accessible. Millions of people's rights are being violated and the vast majority of Americans don't care.

Tuesday, October 27, 2009

Ten Years of Peter Singer

Thanks go to the Daily Princetonian and No Dead Yet for reminding me that Peter Singer, the self proclaimed "most important philosopher of our time" has been at Princeton University for ten years. Singer is one of the very few scholars that leaves me speechless, unable to express myself because I find his writing distasteful and grossly misleading. I do not respect Singer as a scholar though I understand his importance as it relates to issues such as animal rights. But outside of animal rights Singer has extreme views with regard to infanticide, abortion, assisted suicide, and the treatment of people with a disability. In the past I have refrained from engaging Singer as others have; here I refer to Harriet McBryde Johnson and her well-read New York Times article "Unspeakable Conversations" circa 2003. I simply do not want to dignify his work with a cogent reply that would give his views the credibility they do not deserve. Afterall, if it were up to Singer I along with many other people with a disability would be dead.

As expected from a school newspaper, the article in the Daily Princetonian, "Peter Singer Reflects on a Decade at Princeton" by Jason Jung is laudatory. I can accept this. Princeton has spent the last decade promoting Singer and I can hardly expect the university to question its hiring practices after the fact. Regradless, Stephen Drake, research analyst at Not Dead Yet has good reason to be outraged. The Daily Princetonian original article contained a terrible error that was quickly, though inadequately, corrected . Although corrected by an editorial note, this does not change the fact the original article stated Not Dead Yet protests were "violent" and further implied they were responsible for death threats that were levied when Singer was hired. I strongly suggest you read Drake's entry about Singer and the mischaracterization of Not Dead Yet at their blog. I need not repeat what Drake wrote for his words are powerful on their own. What I want to know is to what degree was Singer involved in this misdirection? Did Singer characterize Not Dead Yet Protests to the author as violent? Does he think Not Dead Yet was responsible for the deathe threats he received when he was hired in 1999? Perhaps the author simply made a mistake. I doubt these questions will ever be answered and they highlight a penchant Singer has--when he is criticized he falls back on the same response. Poor Singer is quickly and harshly judged because his views are taken out of context. Critics rely on short summaries of his work and do not understand or take the time to read the corpus of his writings on a particular subject. This approach has been wildly successful and derailed many harsh analyses. This is why I consider him to be an ill tempered polemicist rather than a scholar willing to exchange opposing ideas. Singer effectively diverts attention from the real issues at hand. For instance, when he was hired by Princeton the controversy surrounding his appointment overshadowed the fact he was to be the Ira W. DeCamp Professor of Bioethics in the University Center for Human Values. Singer was not a bioethicist in 1996. He is not a bioethicist in 2009. Singer's area of specialization is ethics, particularly applied ethics. His work is certainly is within the realm of bioethics as are most of his controversial and extreme views. This is not the place or time to delve into this aspect of his career. Instead, I will focus on the article in the Daily Princetonian and how it conflicts with other statements made by Singer. I am doing this so I am not accused of taking his words out of context.

In the Daily Princetonian Singer noted that when he "joined Princeton's faculty in the fall of 1999, he expected good students and good seminars, but he never anticipated the backlash: a large-scale protest against his appointment that included the arrest of 14 activists outside Nassau Hall on Sept. 21, 1999". Let me contrast this statement with the following from the text Peter Singer Under Fire published earlier this year. "I had an inkling my appointment at Princeton was not going to pass unnoticed when someone forwarded me a message that Margaret Tighe, a leader of the Australian anti-abortion movement, had sent to anti-abortion groups in the U.S. Tighe told her U.S. friends about my views, and suggested that they might like to give me a warm welcome. They did". Given the fact Singer had drawn protests in the past, particularly in Germany, he must have been aware that the "warm welcome" referred to was surely meant to be hostile if not vitriolic. And here I am not referring to Not Dead Yet but rather pro-life groups who Singer wrote believed were most likely responsible for the death threats he received. Singer noted that after Not Dead Yet protests made headlines in the New York Times he was inundated with media requests. In recalling this episode he wrote "The worst aspect of the publicity was that both Shapiro and I received death threats. Since American pro-life activists have murdered doctors who carried out abortions, the threats had to be taken seriously". There can be no question here: Singer believes pro-life groups were responsible for the death threats and Not Dead Yet responsible for headlines. He further argues that the Not Dead Yet protests had no support on campus. That may or may not be true but he drew the wrath of many others among them Steve Forbes, alumni of Princeton and trustee who withdrew all financial support as a result of Singer's appointment. The New York Times considered Singer's appointment controversial and compared it to Bertrand Russell's appointment to the City College of New York in 1940.

Surely any person with an ounce of common sense would conclude protests from a host of groups Singer had alienated would mount a significant protest. Simply put, Not Dead Yet did the best job of protesting. Singer recalled in Peter Singer Fires Back that "On my first day of classes, hundreds of protesters, some of whom came from as far away as Chicago descended on Nassau Hall, the center of the university's administration. Several members of Not Dead Yet chained their wheelchairs to the doors of the building, blocking the entrances for two hours before they were removed by police. (My own class was undisturbed, thanks to a security cordon around the building in which it was held.) The protest made good television and was widely covered." This is called civil disobedience, a particularly effective means of protesting. But in this case the protests backfired. The New York Times asked SInger to write an article and restated his well entrenched views in magazine section entitled "The Singer Solution to World Poverty". This caught the attention of the editors at Harper Collins who published Singer's Writings on an Ethical Life. This text cemented his reputation on American soil and he has been working at Princeton ever since.

I find Singer as frustrating as Christopher Reeve was in terms of disability rights. Singer is a gifted writer, well schooled at crafting convincing arguments that are often wrong in my opinion. Likewise, Reeve quest for cure, a laudable goal, obscured if not damaged the fight for disability rights. Thus I find statements by Harold Shapiro, university president when Singer was hired frustrating in the extreme. For example, in the Daily Princetonian Shapiro stated "A university is a place that is at all times questioning the values we have, not just committing to the views we have. One of the roles of a university is to question existing arrangements and maybe suggest better ways of going about things, thinking about things." Well said. And how about starting with questioning the equality of people with a disability, the same people Singer is willing to kill at birth. How about questioning why 19 years after the ADA was passed universities and colleges across the country remain hostile to the inclusion of students with disabilities. How about questioning why more disability studies programs do not exist at top flight schools like Princeton. How about including disability related texts into the curriculum. How about making Princeton the most accessible and open campus to students and faculty members with a disability. These are questions Princeton and other universities should be questioning. Instead we have a polemicist such as Singer pontificating about ten years at a university that should not have hired him in the first place. No wonder academic life frustrates me to no end.

Monday, October 26, 2009

The Law and the Ashley Treatment

Solidarity. Solidarity is something people with a disability lack. We people with a disability lack solidarity among ourselves. People with a disability have little or no support from the general population. Worse yet, those unfamiliar with disability too often think disability is about a medical condition or physical deficit alone. Rarely if ever does the average citizen connect disability rights and civil rights as one in the same. Thus when I state there is no difference between myself and all other people with a disability I am looked at as though I have two heads. Puzzlement is compounded when I maintain there is no difference between myself, a middle aged man with a PhD from Ashley X who is profoundly disabled physically and cognitively. I am often asked why I hold such a "radical viewpoint". My views are steeped in not just disability identity but a thorough understanding of past abuses. Think here of Eugenics, Euthanasia of people with disabilities, forced institutionalization, ugly laws at the turn of the century etc. These travesties of justice have been on my mind ever since I read a long and frightening article by Christine Ryan (Revisiting the Legal Standards that Govern Requests to Sterilize Profoundly Incompetent Children: In Light of the Ashley Treatment, Is a New Standard Appropriate"). Ryan's article is hard to read for a layman and I am not by any stretch of the imagination a legal scholar. In fact Ryan's article reminds me of a Popular Mechanics article circa 1945. There is an interesting introduction, a long highly technical body of the article, and a pithy conclusion with long lasting implications. The conclusion Ryan reached gave my crippled body the chills. She wrote:

The Constitution provides that no state shall “deprive any person of life, liberty, or property, without due process of law.” Who qualifies as a “person” has generated much debate, especially in the context of the profoundly disabled. Persons are entitled to full moral rights and legal status, while nonpersons are not. Depending on the definition of personhood, some profoundly incompetent individuals may not exhibit the necessary characteristics. (pp. 295-6)

Yikes, how many people can look at another human being and believe they are a non-person? This is what a Canadian mom at Life with a Severely Disabled Child questioned on her blog. This observation made me think long and hard about the legal aspects of the Ashley Treatment. In thinking back at what Ashley's parents wrote I recalled that they were required to obtain legal advice to insure the hysterectomy complied with Washington State law. The parents consulted Larry Jones, a Seattle based lawyer with experience advocating for parents of children with developmental disabilities. It has been noted Jones was inspired to enter into this specialization because he had a daughter with severe disabilities. In Jones' legal opinion a court order was not required because sterilization of Ashley was not the sole or primary purpose of the Ashley Treatment. Relying on this advice, the hospital and doctors went ahead with the surgery on Ashley.

In retrospect I simply concluded the parents got bad or at least incorrect legal advise. Lawyers are human, the law subject to a myriad of interpretations and I moved on and did not give the issue much thought--or at least until Ryan tried to describe "incompetent" people as "non-persons". This inspired me to look at the case law upon which it is illegal to sterilize people in the state of Washington. Washington case law on sterlization stems back to In re Guardianship of Hayes circa 1991. While the cognitive ability of Ashley and in the case law are different, the conclusions reached by the court are clear cut. The Hayes court described the way in which sterilization petitions must proceed: Here I quote from an article by Jillian Kornblatt from this year entitled "The Ashley Treatment: The Current Legal Framework Protects the Wrong Rights":

The decision must be made in a superior court proceeding in which, using a clear, cogent, and convincing standard, the court finds that: (1) a disinterested guardian ad litem represents the incompetent individual’s interests; (2) the court receives independent medical, psychological, and social evaluations; (3) the court hears and considers the individual’s views as much as
possible; (4) the individual is incapable of making her own decision about sterilization and is unlikely to be able to in the
foreseeable future; (5) the individual has a need for contraception, including findings that the individual is
physically capable of procreation, likely to engage in sexual activity that is likely to lead to pregnancy in the near future,
and is permanently incapable of caring for a child, even with reasonable assistance; and (6) that there are no alternatives to
sterilization, other contraceptive measures have proved unworkable, the proposed sterilization is the least invasive
option, a reversible or “less drastic” option will not be available soon, and there is not an impending advance in the treatment
of the individual’s disability.

Based on my reading of Hayes it seems obvious that Ashley's parents would not have been able to meet the above requirements given the bias against sterilization. Surely some criteria could have been met but certainly not all as required in points one through six quoted above. Again, I am not a legal scholar but it seems that common sense dictates that a court order was required. However, none was sought and I cannot help but wonder why. Did Jones know the court would have ruled against Ashley parents? Could he have been willing to take the blame after the fact? Jones has a daughter with severe disabilities and is possibly biased. Why did the doctors and hospital accept without question the opinion of a single lawyer? Given the extreme, irreversible and controversial nature of the procedures involved I would think more than one lawyer needed to be consulted. To me, this gets to the heart of the cultural issues involved. Did Ashley doctors, parents, and ethics committee all consider Ashley so different she was not considered to be fully human? I am sure no one articulated this but was this a hidden or unconsciously accepted viewpoint? Was Ashley so different, so impaired cognitively that she did not share the same rights as other children? No one would consider the Ashley Treatment a viable option for a "normal" child. If this is the case what does it say about the way we view children like Ashley and by extension adults like me with a physical disability? History shows us people with a disability have been subjected to abuses of all types. That history is replete with physical violations and civil rights abuses that are appalling. And this exactly why the Ashley Treatment, renamed in recent years as growth attenuation is nothing short of dangerous. In fact it reminded me of the olden days of rehab when I was paralyzed 30 years ago. It was assumed back then high level quads had no quality of life and were often permitted to die or as doctors put it let nature take its course. With the Ashley Treatment we have inverse reasoning. For Ashley nature, that is her body, is the enemy and what could be worse than an adult female with profound cognitive and physical disabilities. Well in this day and age where all sorts of body modification is possible doctors have the power and technology to change the human body and rendered Ashley small. Just because this is possible does not make it right or legally acceptable. There is no question Ashley was illegally sterilized but that is a small part of the larger cultural discourse, one that has implications to all people with a disability. People like Ashley, me and all those in-between.