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Monday, October 20, 2008

Life Worth Living for Second Class Citizens

Over the weekend I carefully followed news reports about Dan James. I doubt readers in America know who Dan James was or the circumstances that surround his death. Mr. James, 23 years old, was by all accounts a gifted British rugby prospect who expected to become a professional player. Mr. James' ambition to become a professional rugby player ended last March when he was paralyzed during a training session with the Nuneaton Rugby Club. Mr. James struggled to cope with his paralysis and attempted to commit suicide several times. Last month Mr. James persuaded his parents to bring him to Dignitas, a Swiss clinic founded by Ludwig Minelli. Dignitas is a non-profit clinic that takes advantage of "liberal" Swiss law to assist those that want to end their life. Mr. James died at Dignitas last month. His parents were the subject of an investigation. The results of the investigation have not been released.

Mr. James death is a social tragedy, a dark statement on how the life of those who are disabled are perceived. The media coverage in Britain is about what I would expect. The beginning point of every article emphasized two points: first, life is exceptionally difficult for paralyzed people. Second, over 100 Briton have sought to end their life at the Swiss clinic and this facts highlights the debate over the ethics of assisted suicide.

As for the difficulty associated with a life and disability, it is indeed hard. But what all the articles I read in British newspapers failed to acknowledge was the problems disabled people face are largely social. The overwhelming negative view of disability was simply a given, the starting point for a debate about how do you choose whose life is worth living. For instance, Mr James' parents only statement about the death of their son was that "it was an extremely sad loss for his family, friends and all those that care for him but no doubt a welcome relief from the prison he felt his body had become and the day-to-day fear and loathing of his living existence". They went on to state that their son "was not prepared to live a second class existence". Where, I want to know, did this self hatred emerge? I also want to know why is it a given that people with disabilities are "second class citizens"? While no one wants to be paralyzed, myself included, I find it hard to fathom why Mr. James could not move on with life. Perhaps he took to heart the notion that paralysis leads to a grim life, one that does not include a family, sex, and athletic achievement. Perhaps he accepted the views of Libby Purves who wants to place the blame on the disability rights movement. In an article entitled "Its Time for a Clear Policy on Euthanasia" (Timesonline, October 20) Ms. Purves suggested a "side effect" of disability rights vocabulary was that "It may blind us to the utter visceral awfulness of confronting a major disability, especially when young. As civilized people we do not allow ourselves to flinch at a half-wrecked body in a wheelchair, yet the flinch and the fear are still there inside". Ms. Purves may be right, perhaps simple minded people will indeed flinch but civilized beings will reject such a primal or thoughtless response. But enlightenment is not within Ms. Purves realm as she goes on to write "we should not prattle about fulfilling lives. Paralympians, Stephen Hawking and the rest if it makes us belittle the terror and self-disgust of a fit young person, paralyzed. No amount of pious writing about the Disability Community should blind us to that". Yikes, these words are sobering to me. If this is an indication of what people think the disability rights community has made little if any progress.

As for the debate about assisted suicide, I do not want to enter that discussion on the defensive nor do I want to see Mr. James death used by those who support or oppose assisted suicide. This sort of debate misses the point and enables people such as Edward Turner, an advocate for "assisted dying" whose mother ended her life at Dignitas, to argue Mr. James death "breaks new ground". From my viewpoint, the only new ground broken was at Mr. James grave. Disability based bigotry has been present for decades and has crushed the lives, hopes, dreams, and ambitions of an unknown number of people. If Mr. James is to be made out to be a victim it is a victimhood that is directly related to the innate prejudice against disabled people. I for one do not want to listen to Mr. Turner's distinction between "assisted dying" and "assisted suicide". That debate has nothing to do with Mr. James, the difference between depression and terminal illness or end of life issues. The fact is Mr. James would be alive today if the stigma associated with disability was forcefully rejected by all people instead of accepted as a societal norm. Thus the assisted suicide debate in this case is a smoke screen for the real problem Mr, James, myself, and other disabled people encounter. Sadly, the issue of disability rights will most likely be totally ignored in Britain and headlines will focus on the sensational aspects of Mr. James death. This is particularly unfortunate as I thought great progress in disability rights has taken place in Britain.