Peter Singer’s “Tribute” to Harriet Johnson – and Paul Longmore’s Response

euthanasia, Harriet McBryde Johnson, infanticide, media issues, Our News & Commentary Blog, Paul Longmore, Peter Singer

On December 28th, the NY Times Magazine published an edition titled “The Lives They Lived,” which consisted of 24 essays about notable people who passed away in 2008. One of the individuals selected for inclusion in the issue was disability rights lawyer/activist/writer/lecturer Harriet McBryde Johnson.

Not long after that, Paul Longmore, historian and Director of the Institute on Disability at San Francisco State University, wrote a message to a large number of people in his address book:

Colleagues and Friends:

This past Sunday, the New York Times Magazine carried obituaries on people who died during 2008. One of the obituaries was about Harriet McBryde Johnson, disability rights campaigner and challenger of philosopher Peter Singer. Yet the Times had Singer write that obituary. http://www.nytimes.com/2008/12/28/magazine/28mcbryde-t.html?ref=magazine. I sent the letter below to the editor a few minutes ago. I urge everyone who regarded Harriet as one of our most important leaders to register their outrage.

As I am sure others did, I waited for the NY Times Magazine to print Longmore’s letter. The wait was in vain. Last Sunday, two responses to Singer were published, and I don’t want to take away from the authors, who made some good points. But they weren’t the points made in the letter submitted by Longmore, whose critique is blunt and brutal. Here it is, published with permission:

Having Peter Singer write an obituary about Harriet McBryde Johnson seems so reassuring. We can have a calm, rational, even friendly discussion about “killing” people with disabilities. That’s Mr. Singer’s word and that’s his ethical and legal position. He thinks parents should have the right to have their disabled babies killed. And that’s what my comrade in disability rights activism Harriet fiercely opposed. In this short piece, Mr. Singer demonstrates that while he learned a couple of things about the real lives of people with disabilities from his encounters with Harriet, he still does not understand the meanings and values and imperatives of her life, or, for that matter, the lives of the rest of us who live with significant disabilities. If he did, he wouldn’t question surveys which find “that people living with disabilities show a level of satisfaction with their lives that is not very different from that of people who are not disabled.” And though the magazine’s editors published a couple of Harriet’s articles, you expose your failure to understand her and her message by offensively headlining this piece “Happy Nevertheless.” In the end, Mr. Singer still thinks that Harriet’s parents should have been able to prevent her from living her life, from having her life at all, a life that championed the dignity and value of all people’s’ lives. So the Times, which a long time ago editorialized in favor of a disabled person’s right to have a doctor help her commit suicide (“Condemned to Life,” April 24, 1986), gives Mr. Singer the last word in his debate with Harriet and enables him portray himself as open-minded, tolerant, and humane. Meanwhile, we who mourn the loss of our Harriet must regard this obituary as not just falsifying but obscene.

A few weeks ago, there was an article saying that the print version of the NY Times could actually come to an end within the next year. This produced a lot of warning calls from (big surprise) professional journalists that our society could suffer without the benefit of classically trained journalists.

Me, I’m not convinced. I don’t see where the NY Times or other big newspaper has really ever “gotten” disability. Maybe it’s time to try something new. –Stephen Drake

Emergency Workers Accused of Letting Man Die – And then the Media Engages in a Posthumous Assault

blog recommendations, crime and punishment, media coverage, neglect, Our News & Commentary Blog, professional accountability, wrongful death

U.K. — This news is making the rounds of blogs and newsgroups. Two ambulance workers in the U.K. have been suspended from work and booked on charges of “neglecting to perform a duty” in a case that initially caused shock. One of the earliest news stories about the incident came out on December 31, from The Press Association:

Two ambulance workers were arrested on suspicion of neglecting a dying man after detectives were passed a tape recording of them in which they were allegedly heard discussing whether they should bother to revive him, it has been reported.

The two men, who are both employees of South East Coast Ambulance Service NHS Trust, were sent to Barry Baker’s home in Brighton, East Sussex, on November 29, after he called 999 saying he thought he was having a heart attack.

It is understood the 59-year-old, who lived alone, collapsed while on the phone to ambulance controllers.

However, the line to the control centre was still open when the crew arrived at the scene and operators allegedly heard the ambulance men make derogatory comments about the state of Mr Baker’s house, The Daily Telegraph reported.

A police source told the newspaper the men were then overheard discussing Mr Baker and allegedly saying “words to the effect that he was not worth saving”.

The pair, aged 35 and 44, were arrested on December 5 on suspicion of neglecting to perform a duty in a public office contrary to common law.

No formal charges have been made against the two men.

Initially, the reaction of the journalists and the public seemed to be one of shock and horror. But then something happened. The company hired to clean up Mr. Baker’s house posted public pictures of the inside of his house on the web. (if you check out that link, you’ll find that SkyNews refers to Mr. Baker with scare quotes around the word “neglected” when referring to the circumstances of his death)

That site is only one of many news sites that posted the pictures and focused on the “squalid” condition of the home. In many of those sites, comments are dominated by people expressing disgust for Baker and not a little sympathy for the ambulance workers.

I’ll say right upfront that this angers and scares me. I have known people whose houses looked like this on the inside. At a few points in my life, my own living conditions have been close to the scenes pictured at that house. I wish I was exaggerating, but I’m not.

As far as the media goes, only Deborah Orr of The Independent seems disturbed by the latest turn in the press coverage of Mr. Baker, and thought it worth the effort to tell readers about the life that Barry Baker actually led:

Barry Baker did not lead a scrupulously conventional life. And his lack of convention was not, in anyone’s terms, rebellious, glamorous or bohemian. On the contrary, at 59, he still lived alone in the childhood home he had shared with his parents until they had died. Overweight, he’d had hip operations, and walked using sticks. His poor health, perhaps in combination with the years of dependency on his parents, contributed to the disordered messiness of his home.

Baker’s life may have had its limitations. But he did his best. He took a taxi to work every day, at a Job Centre in Brighton, and travelled by bus every Sunday to his favourite pub, where he had lunch with friends and played cards. All of his neighbours described him as a kind and gentle man.

As I’ve done before, I want to direct people to William Peace at Bad Cripple. Here’s a snippet:

However, my next thought was are these photographs relevant? What, if any, was the point of releasing these photos? Why did the company hired to clean Mr. Baker’s home after he died post the photos on their website?

The answer to the above questions is clear to me: the worth of Mr. Baker’s life is being called into question.

Read the rest of his excellent post here. –Stephen Drake

UK: Disability Campaigners Press For Law Enforcement on Assisted Suicides

advocacy, assisted suicide, crime and punishment, Our News & Commentary Blog, United Kingdom

As readers of this blog and others covering similar issues will know, there has been a lot of intense media attention and promotion on assisted suicide in the U.K. In spite of “right to die” advocates’ claims of a narrow agenda, the media circus hasn’t been limited to people in the last stages of a terminal illness.

Here are some excellent observations and analysis from disability campaigners, courtesy of communitycare.co.uk:

It is the James case that has raised the most moral issues. The DPP (director of public prosecutions) statement says that, despite “sufficient evidence” to prosecute James’s parents, based on the facts of the case it “would not be in the public interest” to do so.

James had been disabled for 18 months before his death and had made three attempts to kill himself. A psychiatrist found that James was both clear in his wish to die and understood that this was against everybody else’s wishes. His parents, along with health professionals, had repeatedly tried to talk him out of wanting to commit suicide at Dignitas, but to no avail, and so eventually decided to help him.

Jane Campbell, chair of the disability committee at the Equality and Human Rights Commission, believes the case sends out a dangerous signal. She says that while it may seem like a personal matter the drip, drip effect of letting such cases go has big implications for society.

“While I completely understand the family have to live with the consequences of their actions, [the Crown Prosecution Service] has got to start prosecuting otherwise it sends out a message that it’s OK to help people die,” she says.

Both Carr and Campbell express some healthy skepticism about the claims from “right to die” advocates that their agenda is limited to individuals with some sort of terminal illness, and more:

Dignity in Dying is campaigning for the law to be changed only for the terminally ill and doesn’t support such a move for disabled people. Hehir says the organisation sees the two groups as very separate.

Carr disagrees. She says the James case shows the debate is not just about terminal illness but also about disability and that society’s negative view of disabled people means any change in the law for the terminally ill would be in danger of being extended to this group.

“In a world that valued disabled people and their lives maybe the legislation could be safe for just terminal illness but it’s not,” she says.

For Campbell, assisted suicide is wrong in both instances: “While we continue to live in a world where disability or end-of-life care are seen as negative, we will never get to a situation where people can take their own lives in a non prejudicial way,” she says.

Like disability advocates all over the world (including the U.S.), advocates like Carr and Campbell already have their hands full advocating for resources that people with disabilities need to live. Not for the first time, they’re having to find more time and energy to advocate against policies that “compassionately” encourage people with disabilities to die. –Stephen Drake

Breaking News – Swiss Euthanasia Organization Being Investigated for Possible Profiteering

assisted suicide, crime and punishment, euthanasia, george exoo, Our News & Commentary Blog, Switzerland

This just coming out of Switzerland, by way of The Telegraph in the U.K.:

Dignitas, which is meant to be a non-profit organisation, is being forced to open its accounts to prosecutors in Switzerland and disclose how much money it is receiving from its controversial business of assisting suicide.

The founder of the group is reported to have become a millionaire by helping at least 870 terminally ill people – an estimated 100 of whom were British – die. It is said to have taken as much as £61,000 from one woman, 10 times its usual fee.

This isn’t the first time profit motive has been tied to the “compassionate” acts of serial “mercy killers.” Filmmaker Jon Ronson followed George Exoo for a documentary that aired in the U.K in the first part of 2008. Exoo had recently taken on a “helper” and taught her the ins and outs of connecting with people and helping them kill themselves.

In an article from The Guardian, Ronson relates some information Susan (the pseudonym Ronson gives here) tells him while they’re alone:

Exoo drove off to do some real estate business and I was left alone with Susan. We sat on her porch. And she said something extraordinary. She said that unbeknown to Exoo she had set up her own suicide business and was willing to help practically anyone if the price was right.

“I see this as a business,” she said. “George sees it as a calling. There’s a big difference there. For me it’s no cash, no help.” She said her price was approximately $7,000.

“You’re bound to get it wrong, aren’t you?” I said. “And help someone who shouldn’t be helped.”

Susan shrugged. “Probably, at some point, yes,” she said.

I guess that there are folks (Ronson was one of them) who are shocked to find such blatant bottomfeeders as “Susan” in the euthanasia movement. That’s just because they don’t know the movement well enough.

Back to Switzerland and the current story on Dignitas, there’s this “bring it on” tidbit from the head of the organization – Ludwig Minelli:

“If the state prosecution feels I’m making myself rich, they should start legal proceedings.”

Minelli probably doesn’t follow news in the U.S., or he might take a more cautious tone. The day before being hauled into court to face federal charges of corruption, Illinois Governor Rod Blagojevich invited anyone to listen in on his private conversations any time at all – he had nothing to hide.

Turns out the feds had been listening for quite awhile and the good Governor should have left some things he said unspoken.

I look forward to Ludwig Minelli facing the same consequences of Hubris in the near future. –Stephen Drake

Jury Acquits Transplant Surgeon in Ruben Navarro Death

crime and punishment, Our News & Commentary Blog, professional accountability, Ruben Navarro, safeguards

Readers of this blog will be familiar with the depressing and alarming story of Ruben Navarro, who died hours after a botched attempt and a “controlled death” and organ harvesting. This occurred under a protocol still not used widely, but on the increase – labeled “donation by cardiac death (DCD).” This appears to be a recent replacement for the term “non heart-beating donation.”

Hootan Roozrokh was charged with felony dependent adult abuse for his role in ordering the administration of massive doses of painkillers and sedatives when Ruben Navarro’s heart kept beating after being removed from a ventilator. As a transplant surgeon, Roozrokh shouldn’t have been in the same room with Navarro until after he’d been declared dead.

Here’s the first few paragraphs of a story on the trial by Leslie Parilla at Sanluisobispo.com:

A San Luis Obispo jury on Thursday acquitted a transplant surgeon of dependent adult abuse in the first criminal case of its kind in the nation.

A jury of nine men and three women decided Dr. Hootan Roozrokh was not guilty beyond a reasonable doubt of felony dependent adult abuse in connection with an attempted organ removal on Feb. 3, 2006, at Sierra Vista Regional Medical Center in San Luis Obispo. Roozrokh was accused of endangering the health of 25-year-old Ruben Navarro by attempting to hasten his death during the failed procedure by ordering large amounts of painkillers.

Navarro died, but not in time for his organs to be harvested; but his death was not in question. The issue was whether the man who suffered from a debilitating neurological condition was given drugs to speed up his death.

Never before has a transplant surgeon in the United States been criminally accused of trying to hasten a patient’s death in connection with an organ removal. Transplant experts across the nation feared the case would discourage potential organ donors and transplant surgeons. Roozrokh’s attorney, M. Gerald Schwartz-bach, said the case already has had that effect.

“It was bigger than me,” Roozrokh said after the court hearing. “And they recognized that.”

Hopefully, the jury decided this case on the basis of “reasonable doubt,” but there are other factors, hinted at in the paragraphs above, that give some cause for concern.

Was the jury worried about a “guilty” verdict on potential organ donations due to the negative publicity? This was certainly a major theme broadcast by transplant advocates and organizational reps over the course of the case.

In fact, it’s clear that the medical profession is relieved at hearing this verdict:

Dr. Brian Liang, a law professor at California Western Law School who specializes in health law and policy, said Thursday that many in the transplant community were relieved to learn of the verdict.

“It’s been a big deal,” Liang said about the case. “I think people, certainly in the medical community, are very happy this particular case is not being seen as the typical situation, and that medical providers are actually very sensitive to how ethically they’re suppose to behave with respect to procuring organs.”

Added Liang: “And people on the other side of things see we don’t have these physician vultures standing over somebody with their scalpels out waiting for the flat-line to happen.”

Liang said the case has already done what the jury wrote about, revising the way rare cardiac-death donations are done.

“The policies were not there and the policies were generally not well defined,” Liang said. “The jury really saw that.” The United Network for Organ Sharing and others have strengthened standards for the procedures since the case was filed, Liang said.

These are nice and vaguely reassuring words from Liang, but short on details. How have policies been defined or redefined? More importantly, what guarantees are there in regard to how policies will be implemented?

In the Navarro disaster, some longstanding policies were violated, with the acquiscence of a room full of medical professionals.

That brings me to another concern in regard to influence on the jury. It’s possible they thought Roozrokh was being unfairly singled out for prosecution. No other medical professionals – nurses who administered the questionable medications, the attending physician, etc. – was charged with a crime. In fact, according to earlier press accounts, they escaped professional sanctions of any kind.

In Barack Obama’s book “Dreams From My Father,” his aunt, warning him of the rush of relations in Kenya that might want something from him, says “if everyone is family, then no one is.”

Similarly, in a situation like the Ruben Navarro case, where every single person in the room shares a degree of guilt, the thinking might go something like this – “if everyone is guilty, then no one is.”

In an interesting article I came across while reading for this entry, I found this fascinating article by Laurel Fletcher and Harvey Weinstein in Human Rights Quarterly (pdf). Here’s an interesting excerpt on the “if everyone is guilty” topic:

Criminal prosecutions serve to highlight the moral claim that individuals and not groups are responsible foracts of violence. The stated claim is that holding individuals accountable for these acts alleviates collective guilt by differentiating between the perpetrators and innocent bystanders, thus promoting reconciliation. In the absence of individual accountability, the fear is that the entire group ofthose in whose name atrocities were committed will be deemed collectively accountable. Dwight MacDonald conceives of collective guilt as “a Hegelian statist approach in which individuals lack will, thought, and conscience except as these are united in the ‘organic totality’ of the state.” As a result, proponents of this view assert that since everyone is guilty then no one is. Consequently collective guilt absolves everyone of responsibility for past wrongdoing. (emphasis added.)

I plan to read this article more carefully when I get back to work next week, it has a lot of interesting information on the environmental and social factors that increase the risk that people will violate their own ethical standards and the law itself in ways they might not if acting on their own.

As far as I know, the research regarding obedience and group dynamics has never been applied to people in a medical setting. Maybe the Navarro case is an indicator that this is an area of research needs to be undertaken – to improve patient safety and quality of care.

That’s not to much to ask, is it? –Stephen Drake