Update: (NYS) Chemung County Attorney Withdraws Request to Remove Gary Harvey's Feeding Tube

Earlier this month, I shared the story of the fight to save the life of Gary E. Harvey. His wife, Sara, has been in a battle with the Chemung County Attorney over guardianship and an imminent threat to have her husband's feeding tube removed.

There is some good news to report, although the fight is hardly over. From the Corning Leader:

Elmira, N.Y. - A comatose Chemung County man at the center of a legal battle over his medical condition will not have his feeding tube removed.

A request by the Chemung County Attorney’s Office to remove Gary Harvey’s total-parenteral-nutrition (TPN) tube was formally dismissed Monday.

The county Attorney’s Office filed the motion to remove the feeding tube in early June but informed state Supreme Court Judge Judith O’Shea late last month it was withdrawing the request, according to a letter from Assistant County Attorney Donald Thomson.

In early June, the St. Joseph’s Hospital Ethics Committee recommended the removal of Harvey’s feeding tube because it was no longer a viable source of nutrition and was causing fungal septicemia, according to an affidavit completed by Rita Gould, the supervisor of Adult Services for the Chemung County Department of Social Services.

Fungal septicemia is an infection that in Harvey was located where the feeding tube was inserted.

Later in June, however, the infection began responding to treatment, and the county withdrew its application to remove the feeding tube.

Harvey’s case is still far from over, said his wife, Sara Harvey, who called Monday “a big victory.”

Remaining open is the issue of a do-not-resuscitate (DNR) order. According to Thomson’s letter, a DNR order has been issued in the case.

As the article indicates, this doesn't end the struggle. Ultimately, Sara wants to have her husband home where he can be supported and cared for.

There's more to the article - Sara invites people to leave comments on the article on the newspaper site. --Stephen Drake

Time Magazine: Nancy Gibbs Voices Concerns Over Assisted Suicide

(note: for a variety of reasons, the comments have backed up in the moderation queue. I plan on posting backlogged comments tomorrow, with replies.)

The new issue of Time Magazine has an interesting essay by Nancy Gibbs, who is a pretty mainstream journalist. What makes this interesting is that she has taken a look at recent developments on the assisted suicide front, and she's uneasy with what she sees and what more may be coming.

Here is an excerpt from "Going Too Far with Assisted Suicide?":

We allow for the removal of feeding tubes, the withdrawal of respirators, the replacement of aggressive treatment with palliative care; these can all be wise and merciful choices. But each step forward gets a little more slippery. Is there some point, visible in the cloudy moral distance, where the right to die becomes a duty to die? We don't need to set Grandma adrift on her ice floe; the pressures would be subtle, wrapped in the language of reason and romance — the bereaved widower who sees no reason to try to start over, the quadriplegic rugby player whose memories paralyze his hopes, the chronically ill mother who wants to set her children free. Already in Oregon, one-third of those who chose assisted suicide last year cited the burden on their families and caregivers as a reason. A study in the Netherlands found that one in four doctors said they had killed patients without an explicit request--including one doctor who believed that a dying Dutch nun was prevented from requesting euthanasia because of her religion, so he felt the just and merciful thing to do was to decide for her.

There are problems with her analysis. For one thing, she is simply wrong when she implies the Netherlands eligibility for euthanasia is to be "suffering intolerable pain." In fact, the key term in the Netherlands has always been the fuzzy and expansive term "suffering," which has enabled expansion of eligibility for euthanasia over the years.

She might have been even more concerned about recent developments if her own magazine hadn't completely mangled and misreported the basic facts surrounding the Final Exit Network.

Forbes: Article on "end of life" provisions in House health care bill quotes Diane Coleman and Marilyn Golden

Today, Forbes.com published an article by David Whelan entitled "ObamaCare Dives Into End-Of-Life Debate."

Lead sentence:

Buried halfway through the current version of "America's Affordable Health Choices Act," the House version of ObamaCare, is a set of proposals pertaining to end-of-life care.

What follows is a pretty balanced and nonhysterical look at what is in the bill and what people are saying about it. The whole article is worth reading, but I want to share the closing paragraphs, devoted to comments from Marilyn Golden of DREDF and Diane Coleman of NDY:

Still, some activist groups that are not necessarily opposed to ObamaCare are concerned about the end-of-life proposals in the bill. Marilyn Golden, of the Disability Rights Education and Defense Fund in Berkeley, Calif., has been active in opposing physician-assisted suicide at the state level. Many disabled people worry legalizing suicide would lead to euthanasia.

Golden points out that many doctors, when counseling patients, push for do-not-resuscitate orders or have them sign boilerplate documents that can lead to the premature denial of lifesaving medical care. "I don't want to say we're opposed to the language in the bill," she says. "But there are legitimate concerns about how advanced directives are administered."

"There is reason to be concerned," says Diane Coleman, of Not Dead Yet, a group in Rochester, N.Y., that opposes physician-assisted suicide and what it calls medical killing. "The disability community," she says, "often experiences pressure to sign treatment-withholding orders."

She cites a case of a woman who works in her building who became a quadriplegic 11 years ago. Her physicians encouraged her family to remove life support while she was on a ventilator for five months, even though she was improving and eventually recovered to the point where she could live independently with a wheelchair.

Those concerned about unwittingly getting the plug pulled are advised to make it very clear to all their medical providers that they do not have a "DNR," and that if they stop breathing or their heart stops they want to be revived.

"Society does devalue older and disabled people," Coleman says. "And the medical profession is not always very accountable."

There is a "comments" section for the article, so please check out the whole article and leave a comment. --Stephen Drake

It's TIME to pass the Community Choice Act

For more information, visit www.ADAPT.org/takeaction

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

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

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

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

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

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

NY Case on Feeding Tube Withdrawal - Gary Harvey

Unfortunately, there's an all-too-familiar scene playing that's been playing out in Chemung County in New York. In January 2006, Gary E. Harvey had a heart attack and fell down a flight of stairs. The injuries left him permanently and severely disabled.

Gary Harvey was placed in Chemung County Nursing Facility - and a familiar battle began. Sara, Gary's wife, started complaining about the quality of care - or lack thereof. After pushing their own allegations, the facility was successful in having Sara removed as her husband's guardian, severely limiting contact and removing any right to make decisions on her husband's behalf.

Sara Harvey is the best person to tell her story - and she's done so at the National Association to Stop Guardian Abuse.

Here is an excerpt from her entry on May 18th on their blog:

Jan. 2006, my husband Gary E. Harvey, age 55, suffered a tragic accident leaving him severely brain injured. As his wife and sole advocate, I’m fighting to ensure he gets the best possible care and quality of life. We’ve been abused and taken advantage of by Chemung County, CCNF, APS, DSS, Attorneys, and Supreme Court.

I pray that Gary has a full recovery. A man who served his country should not be treated this way! No matter what, I want him home where he’ll be loved, safe, and properly cared for.

The County is divorcing me from my husband and holding him prisoner.

All they care about is money. I only count when it comes to keeping health insurance on Gary and paying the bills; an obligation - not a WIFE. We are not rich and don’t want to see our home and all we worked our entire lives for, taken by the county.

For more information, please check out the link (bizarrely named) "Dying with Dignity" for a televised report on the situation.

Next up is a hearing in Chemung County on July 27th. Sara hopes to prevent impending orders to implement both "DNR" orders for Gary and removal of his feeding tube. She also wants to regain guardianship.

What, ultimately does she want? Again, she says it best herself:

I want my husband home where he belongs and where he will be safe and taken care of – and where he will be allowed to interact with not only his family, but his friends and his priest. Socialization is vital to his well-being as it is for anyone. I fear if he is not rescued from CCNF soon, he will lose his will to live, his spirit will diminish and I will lose him forever. I see him losing his spirit a little more each day. Time is an enemy here. The longer he remains in CCNF, the more his will suffers.

I also fear if he is forced to remain incarcerated in CCNF, he will die of a neglectful action resulting from ongoing, documented inadequate care. Gary trusts me; he cannot speak for or defend himself. He has no one to advocate for him at CCNF because the court has rendered me helpless to protect him.

More on this situation in the next week, as we get more information. --Stephen Drake

More on Falconer Bill: Open Letter from Leaders of Disabled People’s Movement in UK and USA

Over the weekend, a letter opposing the Falconer bill was circulated among disability advocates/activists in the US and the UK. Diane Coleman and I both signed on to the letter on behalf of NDY. But the majority of the endorsers are disability advocates and activists from the UK.

The letter was submitted to a couple of newspapers in the UK, but was never published. It did get circulated by other means, though, and was probably seen by people who needed to read it.

The letter is up now - on Crippen's blog. Dave Lupton is a disability activist and a funny and talented cartoonist, whose works are posted on his blog. Best of all, Dave takes accessibility seriously - all of his cartoons are provided with alternate format rich text descriptions of their content. Dave's blog is just one of several hosted on the site "Disability Arts Online," which is a site well worth checking out to find out what the more artistically talented members of our community are doing.

As mentioned at the top of this post, Dave Lupton has posted the Open Letter on his own blog and is titled "Final Solution."

Here is an excerpt:

As leaders of the disabled people’s movement in the UK and the USA, we are extremely concerned about how the proposed amendment to the Coroners and Justice Bill will impact onthe lives of disabled people.

If Lord Falconer’s amendment succeeds in the House of Lords on Tuesday 7 July then those who assist ‘terminally ill’ people to go abroad to end their lives in ‘suicide clinics’ would be immune from prosecution.

The phrase ‘terminally ill’ is not defined in the amendment, and could apply to people with a very wide range of chronic progressive illnesses some with life expectancy stretching to decades. Disabled people who experience progressive conditions understand far more than non-disabled people about what it is live with these pressures. We know what is acceptable as disease or disability progresses, and for the huge number of us who say no to assisted suicide, it is because we fear the changing culture such an amendment would bring. People without experience of disability, including our friends and families cannot predict what each stage of our personal journey will mean. Furthermore, financial and emotional conflicts of interest will always present an added burden to the situation. A law decriminalising assisted suicide would undoubtedly place disabled people under pressure to end their lives early to relieve the burden on relatives, carers or the state.

Read the rest, with the list of endorsers, at Crippen's Blog. --Stephen Drake

Tom Shakespeare Makes a Less Than Honest Case For Assisted Suicide

Tom Shakespeare is well-known in the disability community in the UK. In the US, it's mostly the disability studies community that is familiar with him. Shakespeare has his feet planted in the realms of disability rights, bioethics and disability studies.

Over the past couple of years, Shakespeare has taken a strong position favoring legalization of assisted suicide for the "terminally ill" (although he generally doesn't define "terminal") and has harshly criticized disability activists and organizations that oppose such policies.

Therefore, it didn't come as a surprise when Shakespeare published an essay in The Guardian yesterday, reiterating his support for legalization and his lack of respect for disability advocates and activists who oppose those efforts.

His essay is titled "A chance for dignity in dying" and carries a partial subtitle of "Jane Campbell is wrong" (referring to Campbell's essay in the same paper).

Let me say it plainly: Tom Shakespeare is wrong. His essay relies on some rather easy platitudes, fuzzy assertions and some pretty gross misrepresentations of euthanasia laws.

After first relating that over 100 people from the UK have gone to Dignitas in Switzerland, Shakespeare writes:

This is not a progressive or humane state of affairs. First, because partners or friends who travel to support dying people are at risk of prosecution once they return, a problem that Debbie Purdy's campaign has highlighted. Second, because organisations like Dignitas appear indiscriminate about whom they help to die. Available information suggests that at least five of the British people whom Dignitas has assisted did not have a terminal illness, but conditions such as spinal injury and diabetes.

Lord Falconer's amendment is a temporary solution to the first problem, and one that is rightly backed by disabled peer Colin Low. The director of public prosecutions has indicated that the current practice of not prosecuting relatives is out of step with the law, which makes assisting suicide illegal in all circumstances.

First of all, it should come as no surprise to Shakespeare about the nonterminality of many of the "clients" accepted by Dignitas. Having a terminal illness or being close to death has never been a requirement for "eligibility" for their "services" - although having the right amount of cash is important.

Second, laws should address real problems. Shakespeare doesn't point to any prosecutions of relatives accompanying family members to Dignitas, because there haven't been any. That would include the families of people like Daniel James, a young man with tetraplegia. Does Shakespeare think that somehow granting immunity to the "terminal" cases will mean that cases involving nonterminally ill people will now be prosecuted? What does "terminal" mean, anyway? For the people with MS or age-related chronic conditions, which are terminal and which aren't? Shakespeare seems unconcerned with such details.

But Shakespeare really goes beyond some familiar-sounding polemics when he offers gross distortions of euthanasia laws outside of the UK:

But the real answer is to bring in effective assisted dying legislation in Britain, designed for mentally competent adults in the later stages of terminal illness, and with suitable safeguards to protect vulnerable people from abuse. Across Europe, laws are being introduced to give access to assisted dying in terminal illness: the Netherlands led the way, but Belgium and Luxemburg have now introduced similar legislation, while Spain and France are now actively contemplating legal measures to help people at the end of life.

Bullshit alert: Holland, Belgium and Luxembourg don't limit "eligibility" for assisted suicide and euthanasia to "terminal illness." Either Shakespeare hasn't bothered to research this or he is deliberately misleading readers. If it's the former, it's inexcusable from a scholar and if it's the latter, it's intellectually dishonest.

And, if Shakespeare had delved into the Netherlands a little more closely, he'd find too much to support disability rights activists he ridicules, as in the recent decriminalization of the euthanasia of disabled infants in that country.

Shakespeare, like all of us, is entitled to his opinion. And we should all be entitled to factual honesty and integrity when we debate these issues. --Stephen Drake

Breaking News (UK): Falconer Swiss Suicide Tourist Immunity Voted Down!

This just in: The House of Lords has voted down the Falconer amendment to extend legal immunity from prosecution to families who take disabled and ill people to Switzerland to commit suicide with the "help" of Dignitas.

From the BBC:

The House of Lords has defeated a motion to change the law that makes it a crime for loved ones to help the terminally ill to travel abroad to die.

In introducing the proposal, Lord Falconer said there exists a legal "no-man's land" that requires clarity.

The Lords voted to defeat the amendment to the Coroners and Justice Bill by 194 to 141.

At least 115 people from the UK have gone to Swiss clinic Dignitas to die, but as yet no-one has been prosecuted.

The debate in the Lords thrust the issue of assisted suicide back into the spotlight and drew sharp criticism from church leaders and advocates for the disabled.

More on this later. --Stephen Drake

UK: Jane Campbell - "Assisted dying: not in our name"

The latest move by euthanasia activists in the U.K. is a proposal to extend immunity from prosecution to family members taking terminally ill or disabled people to Switzerland for assistance in committing suicide. Jane Campbell (Baroness Campbell of Surbiton) has written a concise attack on the rationale for granting such immunity in today's edition of The Guardian:

Today I and hundreds of other disabled and terminally ill people want you to know, we do not want assisted dying to be legalised for "people like us". I will speak in the House of Lords against proposed amendments to the coroners and criminal justice bill that seek to set this country on the road to legalising assisted dying and, ultimately, euthanasia for people with terminal conditions.

Two distinguished peers, the former lord chancellor, Lord Falconer, and Lord Alderdice, want to remove the threat of prosecution from anyone who assists a disabled or terminally ill person to travel abroad for the purpose of being assisted to die.

She makes an excellent point in spelling out just who has not endorsed these amendments:

We are at odds with the supporters of today's amendments, who say they only want to help disabled and terminally ill people. Not one organisation of or for disabled and terminally ill people has campaigned for the changes proposed. This includes organisations that advocate on behalf of people with multiple sclerosis and motor neurone disease; two disabling conditions that are often referred to when describing who would benefit most from this legislation.

If you're interested in how this battle is playing out in the U.K., you should read the rest of Jane Campbell's commentary.

I only have one thing to add. The amendments are probably an initial step in a "slippery slope" political strategy. It is meant to act as a door opener that paves the way for eventual adoption of broader policies. For example, I would guess that within 1-2 years of this "immunity" granted to people travelling to Switzerland, there would be a very predictable follow-up:

Some people don't have the money or don't have the physical ability to travel to Switzerland. If we've provided comfort and cover for those with the wherewithal to travel to Switzerland, don't we have to provide the same protections for those who want to help family members kill themselves at home?

Of course we do. That's the plan. Don't think of it as a "slippery slope" so much as a well-constructed roadway. --Stephen Drake

Another child dead - authorities taking it seriously, if belatedly

Kristen LaBrie, mother of nine-year-old Jeremy Fraser, has been charged with attempted murder in connection with the child's death in March.

Kristina Chew at Change.org has the story:

Yesterday LaBrie pleaded "not guilty" to a charge of attempted murder; she had earlier been charged with child endangerment. The July 6th Associated Press vis WBUR reports that Jeremy was diagnosed with a "severe form of autism" while young. He was diagnosed with non-Hodgkin’s lymphoma in October of 2006 and given an 85 percent to 90 percent chance of recovery. He received "large doses of chemotherapy" and his cancer went into remission. LeBrie was given prescriptions for medications for Jeremy to take at home and this is when the story turns more than puzzling.

According to press accounts that Kristina shares on her blog, LaBrie apparently failed to fill prescriptions for followup medication to treat Jeremy's condition. By the time the failure was discovered, Jeremy's cancer had returned - and in an untreatable form.

I urge people to read the blog entry. There is also the confusing issue of a custody battle between LaBrie and Jeremy's father. Some hard questions need to be asked - Kristina reports that both parents had been subjected to complaints of abuse and neglect numerous times. Where were the authorities who are supposed to monitor families that are the subjects of complaints?

It's not the first time that the Massachusetts DSS has come under scrutiny - they failed to exercise their duties in safeguarding Haleigh Poutre - until she was beaten into a coma. Then they sued to have life-support withdrawn. --Stephen Drake