Australia: ABC ‘Ramp-Up’ Editor Writes “The Case Against Peter Singer”

Australia, euthanasia, infanticide, media, op-ed, Our News & Commentary Blog, personhood, Peter Singer

“The Drum” – part of Australia’s ABC network – is featuring a response to a recent “Q & A” with Peter Singer on the network.

Readers of this blog can guess some of the territory he covered – infanticide, euthanasia, personhood, etc.  Anyone curious can check out the interview.

The responder to Singer is Stella Young, the editor of ABC’s disability-oriented “Ramp-Up” site.

Young’s response to Singer is also a familiar one – offering the example of her own life and stories of the lives of other disabled people as counters to Singer.

Here is the beginning of  “The Case Against Peter Singer“:

The appearance of Peter Singer on Q&A this week has rattled me in a way only the good philosopher can.

Singer, who is arguably better known for his views on animal rights, has views about disability that have been discussed far less here in Australia than they have in the US where he lives and works. I am open about not being a fan of Singer’s work, a statement that’s often met with confusion among friends and colleagues. “But he does such great things for animal liberation!” they exclaim.

While that may be true, animal liberation is not the only subject of Singer’s work. He also believes that parents should be given the choice to have their disabled babies killed after they are born. His argument is not about the right to terminate pregnancy based on the presence of a disabled foetus, although he does believe this as well, but the active killing of babies born with particular disabilities.

I was once one of these babies.

Let me be clear: Singer does not object to my life as it exists now. I am now what he considers to be a person with a right to life. But I, along with all other babies, was not born this way. All babies are born without the capacity to make conscious choices about their preference for life, and so Singer does not consider that they have a right to life in the same way as humans who are capable of this choice. This is especially true, he says, where the infant has a disability.

Young’s writing is excellent – she’s crystal clear, her stories ring true, and she doesn’t overstate Singer’s ethical positions.

Judging from the comments so far – over 200 – few people are swayed by the reality that Young and others with very real and significant disabilities enjoy life.  “Brilliant” and “brave” are two words used to describe him.

For what it’s worth, I put my two cents into the comment fray:

Peter Singer is not brilliant, brave, nor particularly truthful when talking about infanticide or euthanasia.

For one thing – he can be sloppy, finding out just enough about a topic without digging deeper. As an example, in his famous book “Rethinking Life and Death” he wrote a lot about the late (but not missed) Jack Kevorkian, America’s ‘serial mercy killer.’ It was clear from his writing he’d done little research on the man, knowing nothing of his advocacy to gain access to death row prisoners to use in lethal experiments, etc.

Shortly after Singer made it to the US, I was on a radio show with him. He referred to Kevorkian as having ‘helped” terminally ill people. I then informed him that roughly two-thirds of Kevorkian’s body count consisted of people with nonterminal disabilities and chronic conditions. He reply was that, well, maybe *some* of Kevorkian’s ‘patients’ weren’t terminal – I cut him off and restated that it was ‘over half of them.’ (there are studies that bear this out) His response then was to start to say ‘well, I’m sure that Kevorkian evaluated them carefully’ – at that point I cut him off, saying it was ludicrous for a man who didn’t know the health status of the people who died at Kevorkian’s hands would think he could hazard a guess as to how careful Kevorkian was.

The radio exchange ended shortly after that. He only seems ‘brilliant’ to people who are ignorant about disability and quality of life – he depends on that ignorance for support. And it means he doesn’t have to work very hard.

That’s right – contrary to popular opinion, Singer is often sloppy and even dishonest.  Exposing these aspects of his work  can do more to undermine his legitimacy in the eyes of those who defend him on the basis of his intellectual integrity.

Update on Amelia (Philadelphia Transplant Denial) With Welcome News

activism, advocacy, Children's Hospital of Philadelphia, medical discrimination, organ donation, organ transplants, Our News & Commentary Blog, update

I’m happy to share an update on a story we covered earlier this year – about a young girl – Amelia – who has Wolf-Hirschhorn syndrome.  Back in January, her mother wrote about an awful meeting at the Children’s Hospital of Philadelphia about Amelia’s failing kidneys.  They were told by the transplant surgeon that her ‘mental retardation’ made her unsuitable as a candidate for receiving a transplant organ.

The story spread via twitter, blogs and facebook and lead to an outpouring of outraged advocacy from across the country.

By the end of January, the situation changed dramatically.  The hospital strongly reaffirmed its commitment to nondiscriminatory treatment of disabled children and insisted that the original meeting was a series of misunderstandings.  (No one besides the people in that room really know what was said) The main point, though, was that the medical team and Amelia’s family were talking about the course of her treatment over the coming weeks, months and years.  That was good news in every way.

Here is the latest – and great – news from Chrissy Rivera, Amelia’s mom, in ‘Kidney Chronicles Part Three‘:

Our family received word about a month ago that Amelia is officially approved for the kidney transplant. All of her specialists, and some we have only just met, have agreed that there is no medical reason for her not to have the transplant. I will donate my kidney when Amelia’s kidney function falls to about ten percent. She is at about 14% right now. Amelia was at 15% last December when we first heard the news that she would need a kidney transplant.

Read the rest of the post here.

Of course, no one is celebrating the fact that Amelia needs a transplant.  But we can all celebrate the fact that now that she will need one in the near future, everything is set for her to receive a new kidney.

New Bill Peace-Related Response – ‘Who would want a child like that?’

bill peace, bioethics, bloggers, devaluation, Hastings Center, medical decisionmaking, medical discrimination, Our News & Commentary Blog

There’s an interesting new response to Bill Peace’s essay in the Hastings Center Report in which Bill described a very disturbing late-night visit by a physician while Bill was hospitalized for care and complications relating to a stage IV skin breakdown.  An excerpt has been posted as a comment on Bill’s response to invited reactions to his essay.

The new response is from Keith Barrington who blogs at Neonatal Research.

After describing Bill Peace’s essay, he continues with a disturbing (to me, anyway) admission.  From the post ‘A life worth living? Who would want a child like that?‘:

But in Pediatrics and Neonatology we make that assumption all the time. We assume that having a developmental delay as a result of an intracranial hemorrhage is worse than being dead, so withdrawing active care is justifiable. Even when we acknowledge that our predictions are very imperfect, and that many infants with very similar findings might have little impairment, we still offer limitation of care to parents with the goal that the infant will not survive.

This was stunning to me.

Back in 2005, I was invited to submit a Perspectives piece in the Hastings Center Report about the Netherlands and the country’s apparent readiness to embrace infancticide.  We don’t have a copy of the article up yet on the newly-revamped site, but I hope we’ll get that rectified in the next couple of weeks.  The only reason that I bring it up is that I used information from a Canadian study published in 2001 in the essay:

The sentiment for facilitating the deaths of infants with disabilities is evident in numerous research studies. For example, in 2001, Streiner and colleagues published a study in Pediatrics comparing the attitudes of parents and health care professionals in “quality of life” assessments of premature infants. The study found that neonatologists and neonatal nurses were both more pessimistic about pediatric outcomes, and also more likely to judge death to be the best outcome, than were the parents or siblings of the same children. This study, conducted in Canada, is consistent with earlier U.S. studies that have demonstrated a bias on the part of medical professionals in devaluing the lives of infants with severe disabilities. No one should mistake this bias for anything other than what it is ­ an over-valuation of physical and mental norms, which is bigotry.

The evidence that medical professionals are more pessimistic about the ‘quality of life’ of people with disabilities than parents, the individuals themselves, and other family members is not new information.

But it’s possible that Barrington gets that and he isn’t writing to promote the practices of recommending withholding of life-preserving medical treatment based on the assumptions and prejudices of medical professionals.  I’m also thankful he didn’t refer to those recommendations as ‘end of life’ decisions and used more honest terminology instead.

Barrington offers resources I want to share here as well (I’ve fixed the broken links in the original post).:

Annie Janvier was guest editor of an edition of ‘Current Problems in Pediatrics and Adolescent Health Care‘ last year she  asked several parents to write their stories. Many of these stories recount the positive impact of a baby with impairments on their families.

One brief essay was entitled who would want a child like that? (Roy C: Who Would Want a Child Like That? Current Problems in Pediatric and Adolescent Health Care 2011, 41(4):127-127). In response to the question from a doctor which became the title Claire Roy gives an answer which in part is this: ‘A parent wants a child like that …

One can hope that information – in the form of studies like the one I cited from 2001 or in the form of passionate and unequivocal narratives such as Claire Roy’s – can cause at least some medical professionals to modify their beliefs, attitudes and behaviors.

I’m not hopeful of a ‘sea change’ any time soon, though.  Medical professionals, like the rest of us, are most often more powerfully moved by their own experiences than they are by factual information and data.  Studies tell us that the majority of families who go home with children who had a rough start in life love and value their child, regardless of physical or cognitive ability.  But neonatal professionals don’t hear from those folks again and really have no idea how things turn out.  The ones they do hear from are the ones who have to keep coming back – due to repeated health crises, chronic treatment issues, etc.  Those are the families – especially at a moment when exhausted and discouraged – might express regrets about having pursued aggressive medical treatment.  So the fact that medical professionals form a biased outlook about the quality of the lives of disabled people isn’t really surprising.

The real problem isn’t that they form a skewed outlook based on some painful experiences; the real problem is that all too often they confuse their own subjective biases and fears as objective evaluations.  It’s that last bit that makes some of them dangerous – and impervious to contrary empirical data.

 

 

Boston, MA: Boston Mayor Proclaimed July 26, 2012 ‘John B. Kelly Day’

activism, advocacy, Americans with Disabilities Act, disability rights, john kelly, Our News & Commentary Blog, Second Thoughts

Sorry we’re a little late with this.  As most of the folks who read this blog know, last Thursday July 26 was the 22nd anniversary of the Americans with Disabilities Act, or “ADA Day”.

In Boston last week, the ADA shared the spotlight with our very good friend John Kelly – ally, activist, scholar and Director of Second Thoughts, our sister organization in Massachusetts.

Last Thursday, John went to the ADA celebration in Boston to man the ‘Second Thoughts’ booth, which was his main role in terms of participation for the day – or that’s what he thought.  That’s not exactly how it went down, as told on the blog Somerville Voices:

July 26, 2012.  Boston, MA:  John B. Kelly, friend to all Somervillians and especially BFF with Community Access Project Somerville and human rights defenders throughout Massachusetts, arrived at the Boston 22nd Anniversary Celebration of the signing of the ADA (Americans with DisAbilities Act) today- and immediately got to work.

He had a table to organize (Second-Thoughts.org); people waiting for his answers on a number of other projects; and, he was also getting ready to participate in Boston Mayor Menino’s ribbon-cutting for the brand new Boston City Hall Plaza Access Route- an idea that John envisioned, provided Design Expertise for, and generated conducive conditions for, due to his many years of expert access advocacy.

So when he saw a big envelope with the words “John B. Kelly Award” being held by his good friend and colleague, Boston ADA Commissioner Kristen McCosh, he just laughed and asked,  ”What’s that all about?” And was about to go back to work.

At which point John learned that Mayor Menino was about to read a Proclamation aloud, naming today, “JOHN B. KELLY DAY.”

Please read the rest of the story here.

Please visit this link to see and read the proclamation.

Congratulations and thanks to John Kelly – for all the years of hard work, advocacy, activism and leadership!

Assisted Suicide Laws Violate the ADA

ADAPT, Americans with Disabilities Act, amicus brief, assisted suicide, Compassion & Choices, Montana, national council on independent living, national spinal cord injury association, NSCIA, Our News & Commentary Blog, Steve Gold, suicide prevention, VSED

The 22nd Anniversary of the Americans with Disabilities Act (ADA) seems like the perfect opportunity to set the record straight about how theADA relates to assisted suicide.

There’s a rarely articulated idea that assisted suicide is a sort of ADA“reasonable accommodation” to enable people who have serious physical impairments to have equal access to suicide.  This is the rationale for legalizing assisted suicide set forth in the recent Carter case in British Columbia (see our recent blog about that case).

This “reasonable accommodation” theory doesn’t really hold up on closer examination.  For one thing, none of the assisted suicide laws require any type of claim or proof that the individual cannot commit suicide without assistance.  In fact, anyone can commit suicide by refusing food and water, a method of committing suicide that even Compassion and Choices advocates as peaceful.  Furthermore, healthy and able-bodied people are more likely to survive a suicide attempt than die, but assisted suicide bills have never included eligibility for them.

Not Dead Yet has always taken the position that assisted suicide laws violate the ADA by setting up a double standard for how society responds to a person who says they want to commit suicide – some people get suicide prevention and others get suicide assistance, and the difference is the person’s health and disability status.

Below is the ADA excerpt from the Amicus Brief written by disability rights attorney Steve Gold and filed in the case of Baxter v. Montana on behalf of Not Dead Yet, ADAPT, Disability Rights Education and Defense Fund, National Council on Independent Living and the National Spinal Cord Injury Association:

Denying People with Disabilities the State Benefit of Suicide Prevention and Enforcement of Homicide Laws Will Violate the ADA

Congress clearly understood this history when, in 1990, it enacted theADA, the basic civil rights statute for people with disabilities. After extensive hearings, Congress made several Findings, including:

historically, society has tended to isolate and segregate individuals with disabilities, and despite some improvements, such forms of discrimination continue to be a serious and pervasive social problem;  42 U.S.C. Sections 12101(a)(2).

To address and remedy this pervasive and relentless discrimination, Congress substantively required that “no qualified individual with a disability shall . . . be excluded from participation in or be denied the benefits of the services, programs, or activities of any public entity….” 42 U.S.C. § 12132. See 28 C.F.R. section 35.130(b)(discrimination includes denying or not affording an opportunity for people with disabilities to benefit from services either equal to or as effective as those afforded nondisabled persons).

Providing assisted suicide only for people with disabilities and denying them suicide prevention services, based on a doctor’s prediction of terminal status or other justification, violates the ADA because the presence or absence of disability determines whether state and local governments:

  • enforce laws requiring health professionals to protect individuals who pose a danger to themselves;
  • respond to expressions of suicidal intent in people with disabilities with the application of lethal measures that are never applied to people without disabilities;
  • investigate and enforce abuse and neglect and homicide statutes in cases reported as assisted suicides.

The doctor’s determination of someone’s eligibility for assisted suicide confers absolute legal immunity on the doctor, and all normal suicide-related procedures are set aside.  The existence of a disability should never be the basis for these distinctions.

***

So, Happy Anniversary to the ADA! – Diane Coleman