Rochester Disability Community Remembers Disabled Victims of Domestic Violence, Deaf Victims of Euthanasia as Part of National Disability Mourning Day

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Rochester Disability Community Remembers Disabled Victims of
Domestic Violence, Deaf Victims of Euthanasia as Part of National Mourning Day

As part of a nation-wide Day of Mourning, local disability rights advocates will be holding a memorial service this Friday called “Remembering Lives Taken” to honor the lives of disabled people murdered by their families and caretakers.  Rochester activists will also call attention to the recent euthanasia of two deaf men in Belgium.

Domestic violence against people with disabilities has been a pressing issue for local disability rights activists following recent deaths in New York State. In 2006, Ulysses Stable, a twelve-year-old autistic boy, was stabbed to death by his father in their Bronx home. In 2010, Laura Cummings, a 23-year-old North Collins woman with an intellectual disability, was tortured to death after years of physical abuse by her mother and brother. Later that year, pharmaceutical millionaire Gigi Jordan killed her eight-year-old autistic son, Jude Mirra, with an overdose of prescription medications in Manhattan. Also in 2010, Kenneth Holmes, a twelve-year-old autistic boy from the Bronx, was shot by his mother in a murder-suicide. In 2011,  Julie Cirella, a Long Island eight-year-old with cerebral palsy, was killed by her mother, who fed her peanut M&Ms to induce anaphylactic shock due to Cirella’s severe allergy.

The Autistic Self-Advocacy Network, Not Dead Yet, and the National Council on Independent Living held the first Day of Mourning in 2012 as a response to the murder of George Hodgins, a 22-year-old autistic man from California.

30 cases occurring in the US, in which a disabled person was killed by a family member, have been reported by the media in the last five years. The number of actual murders that occurred in that time is likely higher than the cases which received press coverage.

Little public attention is paid to the murders of people with disabilities. Media coverage and public discourse about such killings frequently justifies them as “understandable” and sometimes “merciful,” rather than appropriately condemning these crimes and those who commit them. The national Day of Mourning is a time for the disability community to commemorate the many lives cut short. By honoring disabled victims of murder and celebrating the lives that they lived, these vigils send a message that disability is not a justification for violence.

The Remembering Lives Taken Memorial Service will be held this Friday at 11:00 AM at the Center for Disability Rights, 497 State Street, Rochester.

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Autistic Self-Advocacy Network (ASAN) is an inclusive international non-profit organization run by and for autistic people.  ASAN seeks to advance the vision of the disability rights movement in the world of autism. Drawing on the principles of the cross-disability community on issues such as inclusive education and community living, ASAN focuses on organizing the community of autistic adults and youth to have our voices heard in the national conversation about us. In addition, ASAN works to advance the idea of neurological diversity by furthering the view that the goal of autism advocacy should not be to create a world without autistic people. Instead, it should be to create a world in which autistic people enjoy the same access, rights, and opportunities as all other citizens.

Not Dead Yet is a national, grassroots disability rights group that opposes legalization of assisted suicide and euthanasia as deadly forms of discrimination against old, ill and disabled people. Not Dead Yet helps organize and articulate opposition to these practices based on secular social justice arguments. Not Dead Yet demands the equal protection of the law for the targets of so called “mercy killing” whose lives are seen as worthless.

The National Council on Independent Living is the longest-running national cross-disability, grassroots organization run by and for people with disabilities. Founded in 1982, NCIL represents thousands of organizations and individuals including: Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), individuals with disabilities, and other organizations that advocate for the human and civil rights of people with disabilities throughout the United States.

Amy Hasbrouck – ‘Amour’ and Fear: Assisted Suicide/Mercy Killing at the Oscars

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AMOUR AND FEAR: ASSISTED SUICIDE AT THE OSCARS

By Amy E. Hasbrouck

Once again, a film about “euthanasia” has won an Oscar.  Back in the ‘70s the tear-jerker movies were about people dying of cancer.  In the ‘80s and ‘90s, it was people dying of AIDS.  For the 21st century, the new chic is euthanasia/assisted suicide/”mercy killing” movies.  Million Dollar Baby, The Diving Bell and the Butterfly, The English Patient, The Sea Inside, Un Dimanche à Kigali, Le Temps qui Reste, The Barbarian Invasion (Les Invasions Barbares), Magnus – all have taken on euthanasia/assisted suicide/”mercy killing” from the point of view of non-disabled white people and come to the same conclusion; great idea!

Now we have the film Amour, directed by Michael Haneke, whose leading actors took the Palm d’Or at Cannes in 2012.  The story concerns Anna and George, an elderly couple, former music teachers who live in a nice apartment in Paris.  After a series of strokes, Anna is partially paralyzed and her memory begins to fail.  The couple withdraws, refusing contact and the help of friends, relatives and neighbours, while George cares for Anna as her mental and physical abilities decline.  In the end he suffocates her.

Given the film industry’s adoration of movies that end with a man “lovingly” killing a spouse, it was no surprise when Amour was awarded an Oscar for Best Foreign Picture.

In the real world, many studies have shown that in cases of “assisted suicide”/euthanasia/”mercy killing in elderly couples, the woman is generally an unwilling victim, and there is often a history of domestic violence.  This fact is rarely reflected in the superficial media coverage in the immediate aftermath of such gruesome crimes.  By the time the truth of the matter has been uncovered, the media spotlight has moved on, and the public is left with the same false impression; “he did it for love.”

There has been almost no discussion in the francophone media of the disability and human rights problems with the narrative of Amour, and little in the Anglophone press either.  No critics questioned the film’s seemingly inevitable ending, or George’s motives for killing his wife.  Not surprising, but disappointing anyway.

It’s troubling that films like this come out so often, but fail to educate the public about the real issues in assisted suicide and euthanasia.  In the case of Clint Eastwood’s film, his consistent and vocal opposition to the Americans with Disabilities Act suggests a possible motive for killing off his disabled protagonist.  For other writers and filmmakers, the examination of the issue generally arises more from fear of disability, unresolved grief, or other feelings common to non-disabled people.

Like other media portrayals, these films usually show people with disability either as sad, tragic and incapable victims, or as inspirational over-achievers, but never as ordinary human beings.  Nor do the filmmakers focus on their struggles against the external barriers and discrimination that limit their life options, focusing instead on the physical changes that are natural to the human experience.

The message is clear; the lives of those of us with disabilities are not worth living.  We are better off dead, and the sooner the better.  These attitudes only perpetuate fear of and discrimination against disabled people, and the more often this lie is spoken, the deeper entrenched the fear becomes.  Through that discrimination, the lie becomes the truth, and pressure grows to allow assisted suicide and euthanasia for old, ill and disabled people.

Amy E. Hasbrouck is the director of Toujours Vivant-Not Dead Yet, a project of the Council of Canadians with Disabilities that unites people with disabilities who oppose assisted suicide, euthanasia and other discriminatory end-of-life practices.

BBC – Liz Carr Presents ‘When Assisted Death is Legal” (Euthanasia Road Trip) Part 2

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Liz Carr, wearing a tshirt with the label Euthanasia Road Trip, outside Dignitas, in SwitzerlandCorrecting an oversight in yesterday’s blog post, to the left is a picture of Liz Carr, shared with her permission, that was taken as she arrived at the “Holy Grail of assisted suicide tourism, the Little Blue House aka Dignitas” (taken from her description of the photo on Facebook).

In Part 2 of her Euthanasia Road Trip, Carr visits the Netherlands and then goes to the US states of Oregon and Washington, which both have legalized assisted suicide for a relatively narrow range of people.

In the Netherlands, Carr spends most of her time with NVVE – both with representatives and at a conference they hosted. NVVE is a “right to die” advocacy group in the Netherlands.  Carr notes how the practice of euthanasia has expanded over time in the Netherlands and where it seems to be going now:

About 3000 people died through euthanasia last year. About 3 percent of total deaths, a number which increases each year. They’re mainly cancer patients, but the latest discussion in the Netherlands is about extending the law to another group of people – the over 70s, who may not be ill or dying but are simply tired of life or as NVVE call it, people who have reached a “completed life.” (Quotation marks around term “completed life” added by editor)

After further discussion eligibility of those who have reached a “completed life” with an NVVE member, Carr tells us:

Completed life is going to be the next major debate in relation to assisted suicide and euthanasia in the Netherlands.

Once in the US, Carr interviews both proponents and opponents of assisted suicide – they’re informative and revealing.  Among others, she interviews Barbara Coombs Lee of Compassion, and Choices, Kenneth Stevens of Physicians for Compassionate Care and disability activist/advocate Marilyn Golden.  These are interviews you should listen to, even if you think you’ve heard it all from players in Oregon and Washington state.  You’ll definitely hear some different slants and/or new info – I did.

While even proponents can’t point to any kind of hard evidence that the law has applied to a broader range of people than the law allows, the system in both states makes actual practices hard to verify.  What will the future look like?  Here’s Carr again:

So is it the case that once you introduce assisted suicide and euthanasia for one group that it’s naturally extended to others and that the numbers increase? People talk about a slippery slope in relation to assisted suicide and euthanasia and I’m worried that that’s what it actually means – that once a law’s in, it’s much easier to extend it.

As it turns out, there’s plenty of reason to expect that to happen here in the United States, once the assisted suicide advocates feel that they’ve reached some kind of “critical mass” both in terms of the number of states legalizing assisted suicide and the amount of public support for it.

And that’s where we revisit the concept of “slippery slopes.”  Carr has given us a brilliant and useful definition for one aspect – or definition – for the slope.  As long-time readers of this blog might remember, “right to die” advocate Margaret Battin and colleagues published an article looking at the same countries Liz Carr did – and declared no evidence of a “slippery slope,” because their definition of the slope didn’t include “expansion of eligibility and practice.”

In the past, I’ve talked about another aspect or definition of the slippery slope – the “slippery slope” can be a political strategy, better known as an incrementalist strategy.

If you listen to Carr’s interviews and commentary, it’s clear that expansion of practices in the European countries didn’t just happen – there were – and are – groups that laid groundwork for the expansion.

There’s good evidence the same groundwork is being laid here.  For example, Compassion and Choices has an active campaign to promote VSED – Voluntarily Stopping Eating and Drinking – for people who aren’t terminally ill but want to die.  So far, that means people who are elderly and “tired of living.”  They have also gotten hospice professionals on board to facilitate the process for elderly people who choose to end their lives this way.

It doesn’t take a lot of imagination to predict that – within a few years – Compassion and Choices will switch gears.  They’ll point out that more and more doctors are cooperating with nonterminally ill patients who want to die through VSED.  They’ll add that – unfortunately – dying through VSED isn’t acceptable to a number of people.  The punchline will be this – “If these people who are “tired of life” have the right to starve themselves to death, shouldn’t they have the right to assisted suicide?”

For clarity’s sake, I’m not holding my formulation of slippery slope as better than the one Liz Carr ended up being concerned with.  I think they’re both valid and they’re both useful.  Carr backs up her definition with instances of how things have worked in other countries – that’s both new and extremely useful for us all.

Having listened to both parts of the “Euthanasia Road Trip” documentary at least 3 time through, I appreciate Carr’s work more than every.  She had barely 50 minutes to work with – 50 minutes in which she covered 3 European countries and 2 American states.  All that and she managed to make it engaging and informative – I don’t think there’s a wasted minute.  It’s a fantastic piece and can’t recommend it enough.

Links:

BBC World Service – Liz Carr Presents Part 1 of “Euthanasia Road Trip” Documentary

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Unlike most people, who manage to be good at one or two things, Liz Carr is a broadcaster, actor, international disability rights activist, stand-up comedian and writer. Her latest acting gig is as forensic examiner Clarissa Mullery on the popular BBC One show Silent Witness.

We can now add documentarian to the list.

Carr is presenting a 2-part documentary on BBC World Service titled “Euthanasia Road Trip.”  Part 1 has aired and is available to listen to on the BBC World Service site.  Here’s how the site describes the documentary:

The debate over assisted suicide and euthanasia is a passionate one. But as the discussions continue to rage around the world, there are a few places where assisted death is already legal. Switzerland, Belgium, Luxembourg, the Netherlands, and Oregon and Washington States in the US all have laws permitting assisted suicide or euthanasia in some form.

In this two-part documentary for the BBC World Service, actress and broadcaster Liz Carr goes on a personal journey to all six places to see how it works. As a long-standing campaigner against assisted suicide legislation in the UK, she wants to find out what assisted death means in practice – and whether she’s right to be concerned.

In part one, Carr travels to Switzerland, where she visits the rooms where volunteers help people die, and finds out why the Swiss law on assisted suicide goes back to the 19th Century. In Belgium she meets a doctor who admits to performing euthanasia before it was legal; and in Luxembourg, she finds out why the law on assisted suicide nearly caused a constitutional crisis. Carr questions whether it is possible to balance the right of the individual who wants to die with the responsibility of society to protect those who don’t.

I’ve listened to it twice through – and it’s excellent so far.  Carr talks to family members of people who have died through assisted suicide or euthanasia, promoters of the legislation, physicians and disability activists.  It’s far more even-handed than the pro-euthanasia documentary makers have produced.  You’ll also learn more about the history of legislation and practice than you’ll ever read in a mainstream press article.

Carr’s interviews are great, and often revealing.  Most interesting, so far, are her own reflections about her own opposition to assisted suicide and euthanasia even as she engages with people who are completely comfortable with the practice(s).

After talking to two main advocates of euthanasia in Luxembourg who are obviously dissatisfied with the current parameters of the law (they would like to expand them), Liz Carr shares this  this terrific articulation of the slippery slope:

To me, this is what’s alarming about assisted death legislation; how easily a law can be changed once it’s introduced. The Luxembourg campaigners pushed for a law with strict limits and safeguards, which seems reasonable to most. But then the next step is to extend it to less straightforward groups like under-eighteens or people with dementia. Campaigners against assisted suicide like me often talk about the slippery slope. And I think this is what it means; Once a law’s in it’s unlikely ever to go away and when it gets extended it’s without all the debate and discussion that we have when it first goes through. It hasn’t happened in Luxembourg yet, they’ve only had five cases so far. But the way the people who pushed it through talk about the law makes me worried about the future.

Please tune in and listen to Part 1 of “Euthanasia Road Trip” here.  (click the ‘listen now’ button’)

Bill Peace in Hastings Center Bioethics Forum: “Euthanasia in Belgium: The Untold Story”

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Bill Peace, who writes the Bad Cripple blog and is one of our new board members at Not Dead Yet, has a new commentary out in the Bioethics Forum at the Hastings Center website.

Here’s an excerpt from the article:

Belgian twins, Eddie and Marc Verbessem, were euthanized by lethal injection at Brussels University Hospital in Jette in December. The Verbessem brothers, deaf since birth, were cobblers by trade who lived and worked together their entire lives. Several years ago they were diagnosed with a genetic form of glaucoma that would render them blind. The brothers feared dependency and believed being deaf-blind would cause them to experience “unbearable suffering.”

Under Belgian law euthanasia is permitted if a person is able to make his or her intensions clear to others and a physician determines that the person is experiencing “unbearable pain.” The Verbessem case has generated controversy worldwide. Multiple news reports characterized the deaths as a mercy killing. The message was clear: death is a logical and reasonable option if a person will become deaf-blind. By logical extension there are some disabilities that are a fate worse than death. One does not need to be terminally ill to be euthanized.

Careful readers might notice that the use of terminology is a little confusing here.  But that is probably just a reflection of the press coverage of this incident, as well as coverage of euthanasia in Europe in general.  “Unbearable pain” and “unbearable suffering” aren’t really interchangeable terms, but both – or variants – have been used to describe the reason for the double deaths of Eddie and Marc Verbessem.  (Bill points out problems with this issue later on in the article)
The reason people were “shocked” by this story (I wasn’t one of them) is probably due to the widespread misreporting of the criteria for euthanasia eligibility in the Netherlands, Belgium and Luxembourg.  Reuters and the AP regularly misstate euthanasia guidelines in those countries as applying to the “terminally ill” in “unbearable pain.”  Euthanasia eligibility in both countries always involved wider “eligibility” standards than “terminality” and “pain.”  Unfortunately, when I call to ask for corrections – giving links to government sources that define the eligibility criteria – I just get blown off.  Mostly, I think, it’s because I’m the only one who’s complained.  Which means, of course, that bioethicists – guardians of public ethical discourse – don’t see this as misinformation worth correcting.  Without naming specific individuals, there are several American bioethicists who could probably get a correction from news organizations if they called.  But they don’t – and they don’t write media columns or journal article complaining about it.
This is nothing new.  About eight years ago, I wrote a “Perspectives” essay that appeared in the Hastings Center Report, concerned with the news that doctors in the Netherlands were pushing for acceptance of euthanasia of babies with spina bifida.  Here’s an excerpt from that essay:

…the Associated Press story on the Groningen protocol misinformed readers that the protocol applied to “euthanizing terminally ill newborns.” This is a gross distortion: Verhagen and Sauer made no attempt to hide that they were talking about newborns with “serious medical conditions.”It’s both puzzling and disturbing that this misinformation was met with total silence from the bioethics community. You would think that bioethicists, eager to claim expertise and promising to bring clarity to public debates, would have jumped all over the Associated Press report. This silence reinforces the cynical view that the righteous anger bioethicists express at outspoken disability advocates has less to do with providing clarity than protecting turf.

I’m more cynical than I used to be – I think that the reason bioethicists are silent on the rampant misinformation about euthanasia in Europe is that they’re OK with misinformation that makes euthanasia acceptable to more people.

In case  I have to repeat myself, please go and read the rest of Bill Peace’s article at the Bioethics Forum.