Monday, March 29, 2010

Interview with Debbie Purdy.

Scotland on Sunday has a lengthy profile/interview with Debbie Purdy, the British MS sufferer who won a case last summer that allows her husband Omar to travel to Switzerland with her - and not face prosecution - should she choose to end her life. Here's a clip from the article:

It's the irony of Purdy. The multiple sclerosis sufferer is associated with the right to die campaign but displays a vitality that epitomises the best of living. Last year, she successfully challenged the 1961 law on assisted suicide in the House of Lords. The Scottish Parliament is currently considering a bill to legalise assisted suicide but such moves have been resisted in England. Attempting suicide is not illegal, but helping someone to take their own life is. A blind eye has often been turned to those assisting the terminally ill, but Purdy wanted concrete clarification. Her victory resulted in the director of public prosecutions in England and Wales laying out the conditions under which prosecution would and would not be likely to happen. In Scotland the Lord Advocate has declined to do the same.

The new guidelines make Purdy confident that her husband, musician Omar Puente, would not be prosecuted if he helped her travel to the Dignitas clinic in Switzerland, where patients are helped to die. MS is not terminal, but it is progressively debilitating. Purdy had argued that, without legal clarification, she would have to terminate her life prematurely when she could still travel unaided.

More than 100 people have travelled to Dignitas from Britain without any prosecutions. So was this part of the intellectual argument – and a bit of emotional blackmail – rather than the reality of Purdy's situation? Absolutely not, she insists. There is no guarantee about prosecution. The only person ever charged, though the case was dropped, had a Polish surname. "That was a worry." Puente is not white and middle-class. He's black and Cuban. "In 2008 I joined Dignitas because I was losing the ability to travel by myself, and that was terrifying. If we hadn't won in the House of Lords, I'm not sure I would have got to the European Court, which would have been the next stage, because I probably would have gone to Dignitas. I thought I was losing physical ability more quickly than has actually been the case. And that would have been a terrible mistake."

Purdy has become synonymous with an issue. We know what she stands for but not who she is. Now, she has written a book, It's Not Because I Want to Die. The title sums her up. "I don't think anyone should be in favour of assisted dying. But neither should they be against it. It's not the right choice for everybody, but it should be a choice to explore." It's an important distinction. To understand Purdy's attitude to dying, you first have to grasp her attitude to living.

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Must Read: Stephen's Post at Not Dead Yet.

What is this term disability? And how does it's flippant, inaccurate or egregious use affect the rights of the disabled?

Read Stephen's post at Not Dead Yet. I'm delighted to find that he and I have much more in common than our escalated and un-nuanced online spats have yet determined.

Here are two good clips. He's writing about the call by the Terri Schindler Schiavo Foundation for disability groups to rise up in support of their boycott of The Family Guy show on Fox for its disrespectful and tasteless skit about Terri Schiavo (on the eve of the 5th anniversary of her death, March 31):

Predictably, the Schindler family reacted. I guess I don't blame them. But in a press release they included this:

The Foundation is calling on all disability rights organizations and pro-life organizations to join us in admonishing the producers and writers of The Family Guy.

To my knowledge, no disability rights organization, including NDY, has chosen to join them.

This hasn't gone unnoticed by June Maxam at
North Country Gazette. In her article "Where Are They Now?" Maxam lists the national disability groups that were involved in fighting the removal of Terri Schiavo's feeding tube. She then suggests that the "silence" from the disability community on "Family Guy" is "condoning and advancing the prejudice, bigotry and hatred of the disabled."

The fact is, we're busy with real
crises - and the "Family Guy" skit doesn't come close to being a "crisis." NDY is directly involved with coalitions opposing assisted suicide and euthanasia in 4 states, active in a major "futile care" case in one other, involved with a developing court challenge over guardianship limits in another state, providing technical assistance to disability advocates on state legislation, and monitoring the media for grossly inaccurate reporting on the Final Exit Network and individual homicides of people with disabilities. On top of that, we are working with other national disability groups on other disability rights issues through a national network of advocacy organizations that are run by people with disabilities. The majority of our work isn't that visible -we're seeking change, not headlines.
Speaking of disability advocacy, tomorrow the Family Research Council is hosting a panel on Terri Schiavo's death. Bobby Schindler is on the program, which describes him as follows:
Robert Schindler, brother of Terri; full-time pro-life and disability rights advocate

I'm sure the Family Research Council loves the conflation of disability rights and "pro-life." That's one thing they have in common with prominent "lefty" bioethicists. No one in the actual disability rights community appreciates it, though. And we don't appreciate the description of Bobby Schindler as a disability rights advocate.

During the fight to prevent the removal of Terri Schiavo's feeding tube, the Schindlers showed little understanding of disability rights - or of the potential importance of the involvement of national disability rights organizations in the debate. Surrounded by their prominent prolife supporters, they almost never mentioned the disability rights organizations supporting the struggle to save her life. If they'd made a habit of mentioning that, it would have been harder for news organizations - Fox, MSNBC, CNN, the networks, etc. to pretend this was all just one more battle in the "culture wars." Unfortunately, framing the fight in terms of the culture wars suited "handlers" like Father Frank Pavone and Randall Terry just fine.

I wish I could say that I have any evidence that the Schindlers have any better understanding of the disability rights community and disability rights issues today than they did back then. I don't. They are not involved in any of the battles mentioned above - and play almost exclusively to Christian Conservative audiences.

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Time to Retire the Word Euthanasia

The entire post from LA Times blogs:

People disagree vehemently on issues surrounding death and dying, such as what palliative and medical measures can be appropriately taken at the end of life. But use of the term "euthanasia" doesn't advance the intelligent discussion of end-of-life care, say editors of the Canadian Medical Assn. Journal.

In a commentary published Monday, Dr. Paul C. Hébert and Dr. Ken Flegel argue that the meaning of euthanasia "has become frayed and torn. It mixes ideas and values that confound the debate about dying. It is time to discard it."

Euthanasia originally conveyed the idea of a gentle death. The term eventually evolved and took on another meaning: actions that bring about a gentle death. According to the authors, however, the meaning of the term has broadened further -- and has become clouded -- to encompass actions that involve providing relief to dying people. For example, a survey of doctors in Quebec last year found that 81% said they had practiced euthanasia, and that 48% said palliative sedation -- in which medication is given to provide comfort but which may hasten death -- can be likened to euthanasia.

That's the wrong interpretation, Hebert and Flegel write, saying that "...administering enough narcotics to relieve pain in patients with cancer and adding enough sedation to enable comfort and minimize agitation is appropriate and compassionate care, even when the amounts required increase the probability of death."

Instead of calling such an action euthanasia, health professionals should avoid terms that mean different things to different people, the editorial states. Instead, it advises, doctors should describe their proposed action and its intention and avoid loaded words.

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