New Mobility: NDY quoted in story on U.K. Airing of Ewert Suicide

Back in December, Roxanne Furlong called me. Roxanne is the Associate Editor of New Mobility, a magazine focused on the interests of wheelchair users. It covers the gamut of disability concerns – the arts, lifestyle, leisure, politics and advocacy.

Roxanne called me for comments on the airing of a documentary that featured the suicide and actual death of a “suicide tourist” – the name given to U.K. citizens who travel to Switzerland for the express purpose of killing themselves, using the somewhat expensive services of the organization Dignitas.

The short article, unavailable online, summarizes the situation concisely and also includes my own quotes on the issue. This is from the February 2009 issue of New Mobility, page 14:

Assisted Suicide Aired on Television

Britain’s Sky Real Lives broadcast station took reality TV to new lows by airing “Right to Die: The Suicide Tourist,” the assisted suicide of Craig Ewert, from England. The wife of the retired professor, who had ALS, told The Times that her husband wanted “to show that a terminal illness does not have to result in a painful death.”

“Only individuals who are old, ill and disabled get encouragement, affirmation, and ‘assistance’ in killing themselves when they express such feelings,” says Stephen Drake of Not Dead Yet. “If suicide is really about autonomy, then maybe we shouldn’t interfere with anyone who is serious about killing themselves. Coverage such as this establishes a double standard – in which the lives of old, ill and disabled people are held to be of less value than the lives of younger, healthier, nondisabled individuals. That’s not autonomy, but something somewhat uglier.”

My thanks to Roxanne and New Mobility for keeping readers of the magazine informed of the latest developments in the euthanasia/assisted suicide debates. –Stephen Drake

More on Brignell Column From William Peace at Bad Cripple

Just today, William Peace at Bad Cripple wrote his own thoughts in regard to Victoria Brignell’s column on assisted suicide, which I responded to yesterday.

Peace takes on a different part of the essay by Brignell and provides a long analysis of some issues that triggered his own thought processes. Here’s the introduction:

What I want to address is the questions Brignell posed with regard to assisted suicide and social change. Brignell points out that social practices evolve quickly and wonders “Could we reach a point where it is regarded as normal for a tetraplegic [quadriplegia] person to commit suicide? And as the population ages and pressure on social care services grow, could the authorities regard legalising assisted death for severely disabled people as a convenient means of reducing the demand on an increasingly tight care budget? It seems unlikely such a dystopian vision will turn into reality in the near future”. Brignell’s assessment may be correct in the UK but I think we have already arrived at this dystopian vision in the United States and elsewhere.

That’s just the intro. There’s a lot more and it’s well worth anyone’s time to read – anyone who cares about these topics. –Stephen Drake

U.K.: Brignell Column on Disability and Assisted Suicide Misses Several Points

Last week, New Statesman, a U.K. based magazine covering current affairs, published an essay by disability columnist Victoria Brignell. Unfortunately, “Assisted Death,” indicates she shares a lot of confusion with the very public she’s trying to educate about disability rights and “assisted death:”

In recent years the media spotlight has fallen on a number of disabled individuals who have expressed a wish for an assisted death – people like Diane Pretty, Debbie Purdy and Craig Ewart (whose death provoked controversy when it was shown on national television). What the Daniel James differs is that he was not terminally ill. He was only 23 and if he had not killed himself, he might have lived a normal lifespan.

Daniel chose to take that deadly concoction of chemicals not because he wanted to avoid a long, painful and distressing death but because he simply didn’t want to carry on living.

It’s vital, when discussing assisted death, that we distinguish between those disabled people who are terminally ill and those whose disability is not life-threatening. The ethics involved are very different.

Brignell seems to think there’s a clear bright line here that should be obvious to everyone and that no on is trying to erase, if it actually exists. Perhaps it would be clearer to her if she had the benefit of our experience with Jack Kevorkian in the U.S. Several studies have documented that only a minority of the people who died at his hands were terminally ill. In spite of that documentation, there is a new wave of surprise on the parts of the public and the press when the information surfaces in the news again. In fact, most of Kevorkian’s body count consisted of people with chronic conditions and disabilities – and the nonterminal “clients” were more likely to be women. The muted – to put it kindly – tone of public outrage in reaction to the facilitation of Daniel James’s suicide by his own parents means that there is no real cause for optimism for more accurate and thoughtful analyses across the pond.

As we’ve pointed out before, the worldwide euthanasia movement doesn’t have an interest in limiting “eligibility” for euthanasia or assisted suicide to people who are “terminally ill,” but typically introduce legislation as a “door-opening” strategy. In fact, here in the U.S. the latest move – in New Hampshire – is an attempt to redefine “terminal condition” to encompass any “incurable” condition that will result in “premature death.”

According to the Foundation for Spinal Cord Injury Prevention, Care & Cure, having any degree of tetraplegia does, in fact, reduce one’s life-expectancy (see chart below):

Life Expectancy for Persons who survive at least 1 year post-injury
Age at Injury No SCl Motor Functional at any Level Para Low Tetra (C5-C8) High Tetra (C1-C4) Ventilator Dependent
at any Level
20 yrs 58.4 53.3 46.3 41.7 37.9 23.3
40 yrs 39.5 34.8 28.6 24.7 21.6 11.1
60 yrs 22.2 18.3 13.5 10.8 8.8 3.1

Brignell’s biggest failure in analysis occurs here, IMO:

An able-bodied person can take their own life without anyone else’s assistance but it is almost physically impossible for someone who is completely paralysed to die by suicide. If a tetraplegic person wants to end their life and society denies that person an assisted death then society is forcing that disabled person to go on living against their will.

This seems to undermine a disabled person’s independence – their right to make choices for themselves. So according to this argument, the professionals who helped Daniel to die were correct in supporting his right to self-determination. As Daniel James’s mother wrote so movingly: “Our son could not have been more loved… This was his right as a human being. Nobody but nobody should judge him or anyone else.”

These two paragraphs buy into some of the biggest lies/myths perpetrated by the euthanasia movement and others who argue for a “right” for assistance in suicides for people with disabilities.

The claim that “it is almost physically impossible for someone who is completely paralysed to die by suicide” is false. Several disability activists with quadriplegia have told me they can come up with a long list of ways they can commit suicide without assistance – and have shared some of them.

I won’t share them here. This isn’t a “how to do it” site.

What supporters of the so-called “right” of Daniel James and others with physical disabilities are calling for is access to a specific means to commit suicide. In fact, the controlled substances used by Dignitas or used in other instances of euthanasia or assisted suicide aren’t available to the general public – except through a licensed medical professional.

So this isn’t about the right to commit suicide, but commit it in a certain way – a way that is unavailable to the vast majority of nondisabled people.

I’ll digress for a moment to talk about the choices of two people who committed suicide by different means. Gonzo journalist Hunter S. Thompson took his own life using a gun in 2005. Thompson was well-known for his ability to obtain drugs – without a doctor – that are generally unavailable to more law-abiding citizens. A gun, though, was what he chose as a means of suicide. Daniel F. Gunther, one of the “Ashley X” physicians, committed suicide by asphyxiation in his garage. As a physician, he could presumably have used controlled substances to end his life.

This points up the largely ignored importance of talking about what the debate about “assisted suicide” is really about. Is it about access to suicide or access to a certain means to that end? (no pun intended)

Suppose, for example, that a person with quadriplegia wanted to end her life by hanging. Does that mean she is entitled to have someone set up the rope and noose, put it around her neck, and then strangle her with it?

Suppose someone with tetraplegia wants to use a gun. Is he entitled to have a chosen “friend” hold a gun to his head and pull the trigger.

Sound absurd? Not if the assisted suicide debate is really about suicide itself.

But it’s not about suicide, is it? It’s not about autonomy, either. If it was about autonomy, it assistance would be offered to anyone who wanted to commit suicide by whatever means he or she chose.

Maybe we should all try to figure out exactly what this debate is about. It sure doesn’t look like autonomy from where I sit.

But the first step to figuring out the debate is to reject some of the absurd slogans, mantras, myths and outright lies coming out of the euthanasia proponents – and reframe these issues in our own way and on our own terms. –Stephen Drake

New Hampshire Poised to Redefine “Terminally Ill” – to PWDs and others for Assisted Suicide Eligibility

Well, advocates for assisted suicide in New Hampshire can say – with a straight face – that the bill they’ve introduced is limited to people with “terminal conditions.”

The trick, of course, is that they’ve come up with a new and expansive definition of “terminal condition.”

How expansive?

Here’s a link to HB 304 – AN ACT relative to death with dignity for certain persons suffering from a terminal condition.

Definition of “terminal condition”:

XIII. “Terminal condition” means an incurable and irreversible condition, for the end stage of which there is no known treatment which will alter its course to death, and which, in the opinion of the attending physician and consulting physician competent in that disease category, will result in premature death.

Read that definition carefully, terminality is defined as having a condition that is irreversible and will result in a premature death. My partner would fit that definition. Many people I work with also fit the definition.

None of them are dying.

Keep in mind that this definition is to be used only in terms of eligibility for assisted suicide. It doesn’t, for example, apply to hospice services which are limited by federal rules to those who are deemed as having six months or less to live.

So, no guarantee of palliative care for people with significant disabilities or conditions, unless they’re thought to be close to death. That would be expensive.

OTOH, this bill would offer help with easy and successful suicide for anyone with a serious, significant, potentially life-shortening condition/disability at any time at all.

So, no guarantee of medical support to make life easier, but a “hand out” to those who want to die, even if they’re not dying.

I don’t think this can be written off as just sloppy wording. The sponsors involved are legislators, and if we assume competence on their parts, then we can also assume that they are fully aware of the importance of the specific definitions used in a bill when it comes to applying it in the real world as law.

Make no mistake. This bill, if passed, will guarantee an easy suicide to just about any person with diagnoses of quadriplegia, spinal muscular atrophy, HIV/AIDS, and many other conditions disabilities. Nothing to help people who could have many happy years with the right supports – just an easy and cheap out. –Stephen Drake

We’ve heard that the judiciary committee is holding a hearing on the bill on February 4th. No sign of the hearing on the NH legislature website and no mention in the press. That indicates that the people who got the early notice and probably already signed up to testify are supporters of assisted suicide and euthanasia.


Great News: Minna Mettinen-Kekalainen’s Home Care to Resume Monday (Feb. 2, 2009)

Several news sources, including the Canadian Press and CTV.ca, are reporting that Minna Mettinen-Kekalainen’s home care will resume this coming Monday (February 2, 2009).

As I said, there are several reports, but it’s only fitting to highlight the Sudbury Star article by Carol Mulligan. Mulligan originally broke this story and continued to push it into the public consciousness.

From the story:

Starting Monday, a Sudbury woman suffering from Lou Gehrig’s disease will begin receiving the home nursing care she needs.

The North East Community Care Access Centre will resume providing nursing and personal support to Minna Mettinen-Kekalainen, 42.

Mettinen-Kekalainen has been involved in a public battle with the North East CCAC about her home care. The woman, who has an autism spectrum disorder called Asperger syndrome, has not received help at home from the agency for months after nurses caring for her complained about her behaviour.

Nickel Belt MPP France Gelinas said Tuesday nurses have been lined up to care for Mettinen-Kekalainen starting Feb. 2.

Like others with Asperger’s, Mettinen-Kekalainen experiences some difficulty with interpersonal communication, and her power of attorney, Jason Bushie, has said that can lead to misunderstandings with her caregivers and others.

Gelinas, the New Democrats’ Health critic, got involved in Mettinen- Kekalainen’s case last week. Sudbury MPP Rick Bartolucci’s constituency staff had been working on the case for weeks.

Gelinas said it was a case of “all hands on deck” being able to resolve the dispute between the woman and the agency.

“I’m not the Lone Ranger” riding in to the rescue, she said.

The MPP said the North East CCAC worked hard as well to come to an agreement with Mettinen-Kekalainen.

Although they’re not mentioned in the story, I am sure that the activists, bloggers and students that found many ways to focus attention on Minna’s situation helped grease the wheels of progress as well. That, and the resulting political pressure.

Note to Canadian activists. The CTV.ca article linked at the beginning of this post includes more comments from France Gelinas that bear careful attention. I don’t live in Canada and am unable to evaluate for myself her evaluation of home care in Ontario. But it looks like this person could be an important ally on the issues of community-based support and care.

This from the CTV.ca article:

Now that the matter is settled, Ontario needs to take a hard look at its home-care system, Gelinas said.

“In the short-term I wanted to get Minna some care,” she said.

“We’ve achieved that goal and that was the prime motivator, but you have to look back and learn from those tragic incidents as to how do you change things so it never happens again.”

Former Progressive Conservative premier Mike Harris brought in competitive bidding for home care in the 1990s in an effort to reduce the cost for taxpayers, Gelinas said.

Before that, the Victorian Order of Nurses and other charitable organizations had government funding and provided excellent home care, Gelinas said. Now, the for-profit companies Gelinas is aware of pay low wages and have no benefits or pension plans, which does little to attract top-quality nurses, she said.

“There has to be policy change in the way home-care services are delivered in this province,” Gelinas said.

“Otherwise there will be more and more Minnas out there, and this is not acceptable.”

Bottom line for today, though, is that we won one!

Take some time to savor that.

Maybe five minutes.

Then get back to work. (smile)

Hats off to everyone who worked so hard to get the word out and keep the pressure up. –Stephen Drake