Archdiocese of Boston Newspaper Features Interview with ‘Second Thoughts’ Director John Kelly

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The online version of The Pilot – “the official newspaper of the Archdiocese of Boston” – published an article focusing on ‘Second Thoughts‘ and featuring a long interview with the organization’s director, John Kelly.

Disabilities group has ‘Second Thoughts’ on assisted suicide

By Christopher S. Pineo

 

BOSTON — A group of Massachusetts residents with disabilities opposing legalized assisted suicide are asking Massachusetts voters to have “second thoughts” when they vote on Question 2 in November.

Second Thoughts: People with Disabilities Opposing the Legalization of Assisted Suicide (www.second-thoughts.org) is a Boston based steering committee of disabled people from Massachusetts formed in 2011 to educate and organize the Massachusetts disability community to respond to the ballot initiative. The name “Second Thoughts” emphasizes that rather than offering individual choice, assisted suicide laws create a potentially discriminatory and dangerous practice.

According to the group’s website, Second Thoughts seeks to move the context of the assisted suicide debate beyond simplified political divisions, “between conservative ‘right to life’ and religious groups on one side, and ‘liberals’ who support individual choice on the other.”

Second Thoughts says it encourages voters “to look at assisted suicide in the real world” which it says is one “where insurance companies and other organizations try to limit spending on health care”; “where disabled people face discrimination through architectural barriers and unemployment while lacking in-home services to enable them to integrate into communities”; “where some people think it might be better to be dead than disabled”; and “where abuse and financial exploitation of elders and people with disabilities is at unacceptably high levels.”

John Kelly, director, said the idea of providing “dignity” through death holds dangerous implications for society, and particularly for people with disabilities.

“It is dangerous for people who are already disadvantaged in terms of getting adequate medical care and full social respect. It is very dangerous for a society with such great levels of inequality,” he said.

Kelly described the idea of someone restoring their dignity through death as holding a connotation directly opposed to living with a disability.

“This word ‘dignity,’ which is never defined, we know that it generally means someone who is autonomous in their self-care, someone who does not need someone else to care for them,” he said.

“When society makes a law based on one group of people’s notion of dignity it will discriminate against people in that society whose lives look like the lives that are being rejected under the bill.”

There’s a lot more.  John did an outstanding job of laying out many major arguments we and other disability activists have against legalization of assisted suicide.  The readership of this paper is  significantly large – and now will be exposed to some new reasons to vote against legalization – new, in that they’re unlikely to have encountered them before.

UK: ‘Locked-In’ Tony Nicklinson Loses Court Bid for Euthanasia; Second Thoughts and NDY in Coverage

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Yesterday – August 16th, Tony Nicklinson got an answer to his request to Britain’s High Court – to overturn the existing ban on euthanasia and allow his doctor to kill him with legal immunity when he requests it.  I wrote about Nicklinson a little over a month ago and little has changed regarding what I said then:

One sign of the skewed nature of media coverage and the times we live in is how little time and attention are given to the very real life-and-death situations facing people in the UK in the face of draconian shredding of the social safety net for disabled people.  Some of that shredding is already done and much more is to follow.  The majority of people with disabilities in the UK  are much more concerned with how they are going to survive in the face of these cuts rather than how they’re going to die – since these cuts are ensuring that death will come sooner and more painfully for many.  (If you think I’m exaggerating, check out this summary of the latest report gauging the effects of budget cuts to people in the UK.)

But of course that’s not getting that much coverage, especially considering the number of people who will be affected.  What does get coverage is when some selfish, self-absorbed disabled person makes loud public noises about wanting to kill himself – or, more accurately, wants to have someone else be able to legally kill him when he’s ‘ready.’  That’s not a hypothetical person, but describes Tony Nicklinson, who is getting worldwide coverage regarding his wish to have a doctor be able to kill him with a legal injection sometime in the future.

The public, of course, eats this up.  It’s so much easier to get behind the desire of a disabled person to kill himself than it is to support the needs of thousands of people who may require more of you – more support in the community and even a little more from your paycheck to support the services and supports needed for many disabled people to live decent lives.

It doesn’t cost a penny to support suicide for people with disabilities.  And it supports the notion that since our lives suck anyway, the best help we can receive is to make it easier for us to kill ourselves.

What has changed this time is that there is a little more outreach from some major media to disability activists and advocates than last time.   John Kelly, Director of  ‘Second Thoughts,’ appeared a second time on International CNN.  The video is below.  I apologize for the lack of closed captioning or transcript, but CNN isn’t very good about doing either of those for online content, at least in a consistent way.

Later today – Friday, August 17th – there will be a Huffington Post live video online chat about the Nicklinson case that Diane Coleman will be doing with (we think) 3 other people on Huffpost Live for 20 minutes or so, around 3 pm ET.  You can join the chat at this address:

http://live.huffingtonpost.com/r/segment/502cf96f78c90a1a3900020f

We might be able to get link to the chat after the fact, but the more NDY supporters who sign on for the live event, the better!

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

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“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

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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?’

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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.