Disability Advocates Testify at Massachusetts Hearing on Assisted Suicide Bill

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Yesterday, in spite of short notice and a long delay in the start of the hearing, disability advocates testified in opposition to a bill that would legalize assisted suicide in Massachusetts. Testifying in the video link from NECN are Denise Karuth and Karen Schneidermann, both long time disability advocates. John Norton, diagnosed with ALS (erroneously, I would guess) at age 15, also testified against the bill. We hope to have written versions of testimony – including some that was sent via fax or email – and post it here in the near future.

Our deepest thanks and appreciation to everyone who did what they could to make their voices heard on this bill with so little notice. –Stephen Drake

Massachusetts: Assisted Suicide Bill Hearing Tomorrow – Interesting Quotes from Paul Spiers

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Last Friday, we got word that the Massachusetts legislature would be holding a hearing on an assisted suicide bill tomorrow – February 23.  Here’s the full info (received on Friday) with a link to the bill:

The Joint Committee on the Judiciary of the Massachusetts General Court (state legislature) has just announced that House Bill 1468, An Act Relative to Death with Dignity, will be on the docket for a hearing scheduled for Tuesday, February 23, 2010 (next week), to be held at 1 pm in Room B1 at the Massachusetts State House in Boston.

We contacted disability activists in the state.  Even with such short notice, we should have at least one activist offering testimony at the hearing tomorrow.  Hopefully, that can be shared here later this week.

Earlier today, the Boston Herald published a short article about the hearing.  We received a call from reporter Laurel Sweet yesterday afternoon and gave her contact info for a couple of disability activists – apparently she was unsuccessful in reaching one of them in time to make the deadline for her article.   She did get a couple of short quotes from a local pro-assisted suicide advocate and they make for interesting reading and interpretation:

Professor Paul Spiers of Danvers, who teaches forensic neuropsychology at Boston University, became an advocate of the right-to-die movement after a 1994 horseback riding accident left him paralyzed from the chest down.

Before we get to the quotes, I found it interesting that there were certain things that this article doesn’t say about Spiers. 

For example, Spiers isn’t described as “the president of the board of Autonomy, Inc.”  Autonomy, Inc. calls itself a disability rights group but limits its activities to signing briefs in assisted suicide cases.  I don’t know what position Spiers holds now or what the status of “Autonomy, Inc.” is – it has disappeared from the web.  The name of the group is featured on an amicus brief filed in the Baxter v. Montana case last year. But “Autonomy” itself has vanished.  Compassion and Choices includes him on their Speakers list, but they don’t mention “Autonomy, Inc. there, either.  I’m beginning to suspect that the “organization” exists only on paper for the sole purpose of enabling Compassion and Choices to file a “disability” amicus brief in court cases that come up.

FYI, NDY also filed a brief in that case.  The brief, available in rtf format here, was filed on behalf on Not Dead Yet, ADAPT, Disability Rights Education and Defense Fund, National Council on Independent Living, and the National Spinal Cord Injury Association.

You might recognize those organizations.  Unlike Autonomy, they are actual disability rights organizations.

Now, for the quotes from Spiers:

“It becomes important when you’re looking at life in a wheelchair, but it’s the one choice we don’t have,” Spiers said.

In spite of years of protestations to the contrary, Spiers’ statement strongly implies he is endorsing suicide assistance, not just for the “terminally ill,” but for people with non-terminal and relatively stable disabilities – such as spinal cord injury.  Maybe he feels the time is right to be more open about his personal agenda for legalization.

More from Spiers:

“We’re kinder to our pets than we are to people. You should be able to die peacefully in the company of your family and friends.”

It could be that Spiers is unfamiliar with the grim realities of pet euthanasia.  Or, like most people, he maintains a fantasy about why we end the lives of our beloved pets – even though many – maybe most – aren’t dying and in significant pain.  More likely, they are too much bother to take care of, they’re peeing on the carpet, or too expensive to treat medically.  It could be – like most people – he’s not applying critical thinking to why we actually kill our pets – reasons that have a lot to do with our own wants and needs rather than the animal’s.

For more on the less-than-romantic realities of pet euthanasia, read this article that I coauthored with Dick Sobsey.  –Stephen Drake

Alternet: Ann Neumann’s Disingenuous Complaints About the State of the Euthanasia Debate

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There’s a fresh piece from Ann Neumann on Alternet, bemoaning the way the euthanasia debate in the UK – and here in the US – has become another aspect of the “Culture Wars.” 

As mentioned in an earlier post, there has been a flood of pro-euthanasia coverage in the UK.  It’s even got Ann Neumann, who is pretty much a zealot on the subject, rolling her eyes a bit.

Here’s an excerpt from What Britain’s Assisted Suicide Should Teach Us:

All this attention on the issue of assisted suicide has made for some widely-read and sensational news.  But, as Peter Beresford blogs at the Guardian today, the war over assisted suicide has done little to address the practical, non-contentious issues surrounding assisted suicide.

What would those issues be and who would speak about them?  Well, Neumann has ideas on that – and read carefully to note just who she leaves out:

When you’re in a culture war, there is no DMZ.  And everybody is an “independent advocate.”  Who do you ask for that safe space?  The government?  The media?  The church?  The medical profession?  Because other end of life care issues have been framed into the assisted suicide debate, they can’t be addressed in a rational, meaningful way.  Is the solution increased public education?  A broader coalition for patients’ right?

(She also blames a lot of the discourse on well-funded “pro-life” groups, as though the membership of pro-euthanasia organizations consisted of poor people on public assistance instead of affluent members of society giving hefty cash donations.)

Anyway, if you’re here and you’re reading this – it’s obvious who she left out.  Disability advocates and activists – in the US and the UK – oppose legalization of euthanasia and assisted suicide.  The “practical” issues she and Beresford refer to are exactly the economic, social and support factors that disability advocates constantly bring up as being central to any discussion of assisted suicide and euthanasia.

And Neumann already knows this – or she should.  She found her way to Bill Peace’s Bad Cripple blog last month, but shied away from engaging from the critique of her initial attacks on what she termed “slippery slope” arguments on the blog.  Not long after that, she announced the news of the Disability and Health Journal Issue on Assisted Suicide on her own blog.

So she knows that disability activists and advocates are out there, talking about the “practical” things.  The trouble is, we think legalization of assisted suicide and euthanasia is bad policy. 

In other words, she’s fostering and promoting the very polarization that she bemoans.  Maybe it’s because she really isn’t sorry that assisted suicide is seen as a “culture wars” issue after all.

She’s wrong about that DMZ – we live in it.  And neither the pro-euthanasia activists nor the highly political “pro-life” organizations want to acknowledge our place in the debate, because we’d distract from their Culture War.  Neither side really sees people with disabilities as having a place in their respective cultures, so it’s easy to marginalize us – and both sides do it with abandon and ease.

I hate ending on a sour note like this.  If you want a solid reality check on what is going on in the UK, please check out the newest column from Disability Bitch.  DB’s column generally revolves around what and who she hates – just about everyone and everything (although with an admitted soft spot for fellow bitch Heather Mills).

Things are bad indeed in the UK – so bad that the DB’s column this week announces that “Disability Bitch Loves Life”:

(referring to her “no-legged friend”):

Yesterday, he told me I would have to wait until he’d finished reading about the new crippled actress in Coronation Street before he’d get me dinner.

That was enough. “I’m hurting here,” I told him. “Have some compassion.”

“OK,” he said. “Would you like me to smother you to death with a pillow?”

Goodness. It took a moment’s thought. “No,” I said, “but it would be great if you could pass me some ibuprofen.”

He looked surprised but, eventually, shuffled off to the kitchen to get my supplies, checking I only wanted two anti-inflammatory capsules and not, you know, two hundred.

It seems a good moment to reiterate that I LOVE LIFE. I don’t normally bother saying such things, but then, people have been stating the obvious a lot lately. Only a few days ago, I heard someone from a pro life campaign group telling ITV news, “Killing people is illegal.” It seems the world needs reminding of these simple things.

So, for the sake of clarity: I’m Disability Bitch, and I do hate the world and everything in it, but I don’t want to die anytime soon. It’s no surprise my No-Legged mate thinks I might want to glide off this mortal coil sooner rather than later. The thing is, I don’t. I quite like being here. 

 

If you examine the current British news agenda, you’d think this is a rare emotion for someone disabled and living in pain. See, every single major news story relating to disabled people in the last month or so has been on the subject of voluntary euthanasia, culminating in this week’s headline that, several years ago, veteran BBC journalist Ray Gosling admitted publicly to killing a lover who was dying of AIDS. We know because he announced as much on a BBC regional documentary filmed several months ago which was only broadcast this week.

Call me old fashioned, but I’d always assumed that if I mentioned to my employer that I once deliberately suffocated someone, they might, y’know, call the police and report the event. Instead, the so called mercy killings of terminally ill or disabled people have become humdrum with him talking openly about it in radio and TV slots the next day. At time of writing, Mr Gosling has been arrested on suspicion of murder. 

That’s just an excerpt.  Read the rest here.

I’d like to see the situation improve, but when you consider the combined efforts of the media, pro-euthanasia lobbyists, and the religious advocates – none of whom seem inclined to point to the relevance of disability advocates in this debate – I’m afraid the poor Bitch may have to remind people that she really loves life in the future.  –Stephen Drake

Presidential commission bodes ill for people with disabilities – Mike Ervin in “The Progressive”

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People who have read the selections in our humor section will already be familiar with Mike Ervin, who writes a bimonthly satire column in New Mobility.

Mike also writes serious pieces of policy, media and cultural analysis.  He’s written many of these as op-eds for the media project at The Progressive.

Mike’s latest piece looks at President Obama’s proposed bipartisan commission on entitlement problems.  He figures – no doubt correctly – that the “common ground” the parties will find entails cutting the supports for poor, disabled and elderly people. 

Here’s the intro for Mike’s op-ed, on the proposed bipartisan commission and what it could mean for people with disabilities:

President Obama’s decision to create a commission on how to cut so-called entitlement programs is ominous news for millions of people with disabilities.

In January, the Senate rejected legislation endorsed by Obama that would have created such a commission.
So in his State of the Union address, the president said he would create a similar “bipartisan fiscal commission” by executive order. Obama stated that his commission will be “modeled” on the one rejected by the Senate.

If his commission is anything like the one that was in the Senate bill, it would pose a serious threat to people with disabilities, seniors and others who rely on programs like Social Security, Medicare and Medicaid.

Maybe gridlock isn’t such a bad thing after all.

Read the rest of Mike’s essay here.

Resources: Two websites – one new, one updated

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I wanted to highlight two valuable resources for NDY readers.  I try to point out other sites and blogs containing material related to NDY issues.  They are valuable for me and I figure that readers of this blog will find them valuable as well.

First off is a brand-new website.  Better Off Alive is a creation of Pamela F. Hennessy, with Clair Lewis currently listed as the sole other contributor on the site.  The site covers a range of subjects – media, elder care, eugenics, euthanasia – to name a few.  Here’s a brief description of the of the site from the source:

Better Off Alive is a community for people who have been denied wanted health care or who have been encouraged to hasten their own deaths because they live with disabilities or chronic medical circumstances.

Our contributors are people whose lives have been directly touched by these issues, disability rights advocates, life advocates and those who seek a higher level of medical ethics and the restoration of personal liberty to people victimized by health care rationing.

Please check out Better Off Alive – better yet, bookmark it to check back for updates.

Next up is a newly-updated resource.  Disability Rights Education & Defense Fund (DREDF) has overhauled its section on assisted suicide with lots of resource material.  Here’s some info on DREDF from the site:

The Disability Rights Education and Defense Fund, founded in 1979, is a leading national civil rights law and policy center directed by individuals with disabilities and parents who have children with disabilities.

The mission of the Disability Rights Education and Defense Fund is to advance the civil and human rights of people with disabilities through legal advocacy, training, education, and public policy and legislative development.
The vision of the Disability Rights Education and Defense Fund is a just world where all people, with and without disabilities, live full and independent lives free of discrimination.

Check out DREDF’s Resource Page on Assisted Suicide here.