Sunday, July 19, 2009

Singer plagiarizing Jerry Lewis? -- And links to other bloggers

On Friday, I wrote about a response to the long essay by Peter Singer in which he defends rationing in health care. Eventually, he engages in the most blatant and direct assault I've ever read from him on the value of life with a physical disability. One thing in particular struck me because it sounded vaguely familiar, but I couldn't pin it down. Here's the quote:

If most would prefer, say, 10 years as a quadriplegic to 4 years of nondisabled life, but would choose 6 years of nondisabled life over 10 with quadriplegia, but have difficulty deciding between 5 years of nondisabled life or 10 years with quadriplegia, then they are, in effect, assessing life with quadriplegia as half as good as nondisabled life. (These are hypothetical figures, chosen to keep the math simple, and not based on any actual surveys.) If that judgment represents a rough average across the population, we might conclude that restoring to nondisabled life two people who would otherwise be quadriplegics is equivalent in value to saving the life of one person, provided the life expectancies of all involved are similar. (emphasis added.)
I'm sure (tongue partway in cheek) that I found Peter Singer's inspiration for his "hypothetical figure." In 1992, Mary Johnson wrote about "Jerry Lewis, Jerry's Orphans and the Telethon."

I found the quote I was looking for in her conveniently placed sidebar - top of page on the right-hand side:
"I decided after 41 years of battling this curse that attacks children of all ages, I would put myself in that chair, that steel imprisonment that long has been deemed the dystrophic child's plight. . . . I realize my life is half, so I must learn to do things halfway. I just have to learn to try to be good at being half a person."
From "What if I had Muscular Dystrophy?" Parade magazine, Sept. 2, 1990
Should Jerry Lewis sue for plagiarism? Or is this just a case of (cough) great minds thinking alike?

Enough of me, though. Some other folks in our community have been writing and they're worth reading. I'll add more links to this post if more bloggers post critiques.

In the meantime, please check out:

WHEELIE CATHOLIC: Contingent on walking?

Pizza Diavalo: Shorter Peter Singer: Being Disabled Sucks, Or, How To Wallow In Ablism

Diary of a Goldfish
: Being a Wally About QALYs

Midlife and Treachery
: The 1/2 Compromise and Health Care

Gary Presley
: Peter Singer Applies Utilitarian Values to Your Life

Bad Cripple: Peter Singer and Health Care Reform

That's all that I could find - right now. Let me know of any more out there and I'll put up the links. --Stephen Drake

Friday, July 17, 2009

Peter Singer in the NY Times: Disabled Lives Worth Less, Hypothetically

The New York Times, which seems to be absolutely enthralled with Peter Singer, has a long essay written by him in its magazine section right now - and which will be in Sunday's edition.

Titled "Why We Must Ration Health Care," it's a complex discussion of public policy and health care drawing on a multitude of facts, statistics, surveys and studies.

Complex, that is, until he gets to a certain segment of the population. Then he relies solely on the "hypothetical." That segment of the population would be people with disabilities, of course:

Health care does more than save lives: it also reduces pain and suffering. How can we compare saving a person’s life with, say, making it possible for someone who was confined to bed to return to an active life? We can elicit people’s values on that too. One common method is to describe medical conditions to people — let’s say being a quadriplegic — and tell them that they can choose between 10 years in that condition or some smaller number of years without it. If most would prefer, say, 10 years as a quadriplegic to 4 years of nondisabled life, but would choose 6 years of nondisabled life over 10 with quadriplegia, but have difficulty deciding between 5 years of nondisabled life or 10 years with quadriplegia, then they are, in effect, assessing life with quadriplegia as half as good as nondisabled life. (These are hypothetical figures, chosen to keep the math simple, and not based on any actual surveys.) If that judgment represents a rough average across the population, we might conclude that restoring to nondisabled life two people who would otherwise be quadriplegics is equivalent in value to saving the life of one person, provided the life expectancies of all involved are similar.
For Singer, this is a typical maneuver when promoting the devaluation of people with disabilities. He doesn't bother to use any empirical base for his assertions, and he probably figures he won't need to. For one thing, he can pretty much count on the prejudices of the nondisabled readership of the paper to take what he's said here as objective. Second, since people have imperfect memories, many readers are likely to remember his "hypothetical figures" as facts - since so much of the analysis is based on using some sort of informational source (even individual stories are an information source and a source Singer favors).

After asserting that value-based formulas (or rather formulas that devalue PWDs) must form the basis for allocation of health care resources, Singer continues:
Some will object that this discriminates against people with disabilities. If we return to the hypothetical assumption that a year with quadriplegia is valued at only half as much as a year without it, then a treatment that extends the lives of people without disabilities will be seen as providing twice the value of one that extends, for a similar period, the lives of quadriplegics. That clashes with the idea that all human lives are of equal value. The problem, however, does not lie with the concept of the quality-adjusted life-year, but with the judgment that, if faced with 10 years as a quadriplegic, one would prefer a shorter lifespan without a disability. Disability advocates might argue that such judgments, made by people without disabilities, merely reflect the ignorance and prejudice of people without disabilities when they think about people with disabilities. We should, they will very reasonably say, ask quadriplegics themselves to evaluate life with quadriplegia. If we do that, and we find that quadriplegics would not give up even one year of life as a quadriplegic in order to have their disability cured, then the QALY method does not justify giving preference to procedures that extend the lives of people without disabilities over procedures that extend the lives of people with disabilities.
This alleged interest Singer puts forth in soliciting the evaluations of quadriplegics isn't something I take too seriously. He's spent enough time in the field to know that there are plenty of medical professionals who are operating on the assumption that life with a significant disability isn't worth living - and acting on those assumptions. Just ask Terrie Lincoln and Baroness Jane Campell.

Singer finishes his assault on people with disabilities with the following:
If life with quadriplegia is as good as life without it, there is no health benefit to be gained by curing it. That implication, no doubt, would have been vigorously rejected by someone like Christopher Reeve, who, after being paralyzed in an accident, campaigned for more research into ways of overcoming spinal-cord injuries. Disability advocates, it seems, are forced to choose between insisting that extending their lives is just as important as extending the lives of people without disabilities, and seeking public support for research into a cure for their condition.
This is nothing less than a deliberate dumbing-down of the issues surrounding medical research and disability. First, there are disability advocates who say they are concerned with the way "cure" research is pitched to the public - concerned with the way in which medical research is seen as more important than including and accommodating the people with disabilities that are trying to live their lives. There's no excuse for this misrepresentation - Singer made much of his assocation with Harriet Johnson, who was proud of her participation in Jerry's Orphans - a group of people with disabilities who regularly protest that cure-oriented fundraising event. Most recently, self-advocates who have autism have joined the list of people saying they aren't interested in a cure.

Most people with disabilities don't think too much about "cures," but many would approach any "cure" with some careful apprehension: What are the benefits? What are the risks?

Again, typically for Singer, what he's saying is this: If we're going to debate or discuss the positions of disability advocates, then these terms that I've laid out are the ones that we're going to use.

If that sounds like Pat Buchanan laying out the terms for a discussion of racial discrimination, you'd be right. As a white male, Buchanan is representative of the type of cultural conservative who demands to lay out the terms for discussing racial discrimination and injustices in this country. As a regular watcher of MSNBC in the morning before work, I get to see him do his schtick on a regular basis.

While Buchanan and Singer may not agree on other issues, their tactics for dealing with debate have some similarities. --Stephen Drake

Thursday, July 16, 2009

UK: New Swiss Suicide Tourist Case - Double Suicide

I'll say something that others are probably too polite to say:

Pro-euthanasia advocates in the UK have got to be very very grateful to the children of Sir Richard Downes and his wife Joan. Why? They went public with the story that they accompanied the couple to Switzerland for a double suicide - and chased the story of Jane Campbell's "near death" experience with doctors out of the media spotlight.

Notably, Jane Campbell's story was limited to coverage by the UK media. The story of Downes and his wife, though, is international news - as evidenced by coverage in the NY Times:

Attempting suicide has not been a criminal offense in Britain since 1961, but assisting others to kill themselves is. But since the Zurich clinic run by Dignitas was established in 1998 under Swiss laws that allow clinics to provide lethal drugs, British authorities have effectively turned a blind eye to Britons who go there to die.

None of the family members and friends who have accompanied the 117 people living in Britain who have traveled to the Zurich clinic for help in ending their lives have been charged with an offense. Legal experts said it was unlikely that that would change in the Downes case.

But British news reports about the Downeses’ suicides noted one factor that appeared to set the case apart from others involving the Dignitas clinic: Sir Edward appeared not to have been terminally ill. There have been at least three other cases similar to the Downeses’, in which a spouse who was not terminally ill chose to die with the other.
Note - the reporter has his facts hopelessly mangled here. There have been a significant number of people getting "assistance" to commit suicide in Switzerland. So there's really nothing that "sets this case apart."

Friend and colleague Gary Presley has posted his thoughts at the blog on his website and also at Seven Wheelchairs. This is a direct link to his post.

Excerpt:
And I understand the reaction of euthanasia advocates. Downes' choice takes the argument for assisted suicide to the ultimate, far past their dream that euthanasia be incorporated into the dynamic of medical treatment.
Read the rest here. --Stephen Drake

Wednesday, July 15, 2009

UK: Our Time To Die? A satirical look at media coverage of assisted suicide

Originally made for the Society for Disability Studies (SDS) Conference, 2009, this film by Liz Carr and Katherine Araniello, is a satirical look at the media coverage of assisted suicide in the UK. While folks in the UK or people who follow this topic will be able to identify the specific video clips most readily, the message is clear to anyone, I think.

Great video - features, among other things, excerpts of "Euthanasia Blues" by Norm Kunc and Emma Van der Klift.

Bad Cripple: William Peace on the Assisted Suicide Debate, Tom Shakespeare - and Me

Regular readers have probably come to expect periodic links to Bill Peace at his Bad Cripple Blog.

His latest entry, posted on Sunday, is titled "Assisted Suicide: A Necessary but Depressing Debate."

It should come as no surprise when I strongly recommend that people who are interested in these issues read what he has to say.

Part of his entry has to deal with Tom Shakespeare's recent published support of the Falconer bill in the UK - and my critique of his essay:

Like Drake, I found Shakespeare's position and arguments weak and misleading. I also agree with Drake that Shakespeare is simply wrong in advocating for effective assisted suicide legislation in Britain. However, I think Drake could temper his critique because writing that Shakespeare's editorial relies on "easy platitudes, fuzzy assertions and some pretty gross misrepresentations of euthanasia laws" only heightens an existing divide between the two men. In my estimation Drake is correct in his assertion about Shakespeare's editorial in the Guardian but neglects to point readers in the direction to Shakespeare's aforementioned book, especially chapter 8 on "Autonomy and the end of life". Instead of going for the jugular in his pointed critique of Shakespeare I wish Drake had stuck to the facts--they are not only in his favor but on the side of any reasoned argument against assisted. For instance, Shakespeare is clear on the fact he favors assisted suicide for only those who are terminally ill. Yet Shakespeare does not in any way define who is and is not terminally ill. This is not a matter of minor debate but a central issue that gets to the core of assisted suicide at a practical and theoretical level.
Believe it or not, I am not going to argue with Bill's critique of my critique. He makes intriguing points - and he's operating from a knowledge base I don't share. I have lots of "holes" in my own reading - in disability rights and in bioethics. Tom Shakespeare is one of those people whose work I probably should know - and don't.

So I get to think about how that knowledge would have affected what I wrote - and I'm still not sure how that would work out. I'm still going back and rereading Bill's piece for his thoughts - on Shakepeare and on the wider debate.

When Bill writes something about assisted suicide, euthanasia or related topics, I realize how much I've missed having a larger and richer discussion about these issues. Not so many years back, there seemed to be a flood of activists and scholars eager to write about their views on Terri Schiavo and "Million Dollar Baby."

These days, for reasons I am still trying to sort out, those same scholars and activists (more true of the former than the latter) are less visible and vocal on these issues.

But this week, anyway, I have Bill Peace's latest entry to read - and reread. Please do the same. --Stephen Drake

Tuesday, July 14, 2009

Video Link to July 7 Debate on Falconer Bill (Swiss Suicide Immunity)

There's good news and bad news. I can provide the link to the debate on Lord Falconer's bill on extending immunity to people who accompany family members to Switzerland to commit suicide at a Dignitas facility.

The bad news is this:

It's a continous videostream of the entire 7.5 hours of debate in the House of Lords that day and the connection and buffering can be erratic.

As I've mentioned before, I have terrible trouble doing transcripts myself. Unless someone else types a transcript, there won't be one available - as far as I know.

Having said that, the link to the debate is below.

The statements by Baroness Campbell opposing the bill start at about 3:45:45 in the 7.5 hour video stream. The bar that advances the video is at the bottom of the screen. That means - with luck and some fine motor coordination - you can advance the video to somewhere near the time that Baroness Campbell starts to speak.

Lords Chamber - Meeting started on Tuesday 7 July at 2.30pm - ended at 9.59pm

Sorry I couldn't provide something more accessible this time. --Stephen Drake

Monday, July 13, 2009

UK: More on Jane Campbell - Baroness of Surbiton

I hope to get a transcript and/or link to video up later, but it turns out that Baroness Campbell of Surbiton delivered a speech during debate of the Falconer bill that caught everyone's attention - and may have significantly affected the outcome of the vote.

Om July 7th, the Daily Mail ran an article about Campbell and her statement to the House of Lords:

Speaking from a wheelchair and needing help from a colleague to sip water, Baroness Campbell condemned the amendment for 'turning the traffic light from red to green on state-sanctioned assisted dying - albeit in another country'.

She said she had been told by doctors that her life was at an end - and said she could imagine that others would come under similar pressure from relatives.

'I tick every box of Lord Falconer's criteria to die. I could go tomorrow and, believe me, I would have no trouble in persuading two doctors. Three years ago two doctors persuaded me it was time for me to go on my way.'

She added: 'It takes extraordinary will to rise above these views, especially when such views are held by loved ones.'

Baroness Campbell, who needs a ventilator to breathe at night, added: 'Legalising premature death is a treatment option to plant the seeds of doubt about one's right to demand help to live with dignity and undermines the state's responsibility to ensure all citizens can live with dignity.

'If this amendment were to succeed I believe it will place a new and invidious pressure on disabled and terminally ill people to think they are closer to the end of their lives. Some will consider death is preferable to fighting for the support to live with dignity. It would be the cheapest, quickest, simplest option.'
That wasn't all there was to the story, either. On July 11th, The Telegraph ran another story on Campbell, with even more detail:
Baroness Campbell considers herself very, very lucky. Her husband was able to tell the medical staff what his wife could not: that she already spent every night on a ventilator. And yes, she did want to be resuscitated. Her condition may be degenerative. But she was a fighter, and she wanted to live. To the hospital's shame, he was forced to show doctors photographs of Lady Campbell receiving an honorary doctorate in law from Bristol university to ''prove'' the quality of her life.

''What frightens me about that night is that I knew these doctors were doing what they thought was best,'' she says. ''Doing what they thought I would have wanted. But if Roger hadn't been there, there would have been no one to tell them my wishes.

''What was even worse was the isolation I would have felt if I had been alone. Part of me began to think: 'would I have want to live on a ventilator? When you are in that situation it could be very easy to be persuaded that maybe you wouldn't. I knew they weren't right but I remember thinking: 'how much say have I got in this? If Roger wasn't here, would I have been allowed to die because the doctors believed it was kinder to end my life?''
Campbell's story is disturbing and stops short of where real horror lies.

What if Campbell had been a lower-middle class pensioner with no higher educational degree or notoriety of any sort?

Let's push it farther than that:

What is happening right now to disabled people with little education or income - and with no one to convince doctors that their lives are worth living?

Readers of this blog might note similarities between Campbell's story and the one posted last month about Terrie Lincoln and her family's fight to make sure she survived a spinal cord injury.

The recent vote in the UK, along with the attention given to Campbell's story in the press, indicates stories like those of Baroness Campbell and Terrie Lincoln are powerful advocacy tools. I strongly suspect that these stories are just the tip of the iceberg. We need more of these stories - and people willing to tell them. The trick is finding people who actually survived these kinds of situations. --Stephen Drake