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

Maryland Disability Law Center Opposes HB 30

Yesterday, January 27, the Health & Governmental Operations Committee met in Maryland over the fate of HB 30, one of those innocuous-sounding bills with not-so-innocuous details buried within them. (apologies, but the link to the bill is to a pdf file) In this case, the bill is titled "AN ACT concerning Health – Terminal Condition – Counseling."

Who could possibly have problems with that?

A little more about the act from the introductory text:

FOR the purpose of requiring certain health care providers to provide certain information and counseling about terminal condition care options to certain patients with a terminal condition under certain circumstances; requiring certain terminal condition care counseling to include certain information; authorizing terminal condition care counseling to occur over a certain period of time; authorizing certain referrals for terminal condition care counseling under certain circumstances; requiring certain health care providers to make a certain referral and provide a patient with certain information under certain circumstances; defining certain terms; and generally relating to providing terminal condition care counseling to patients with a terminal condition.

If you're like me, you might tend to get a little cross-eyed and very restless when trying to burrow through this jargon and figure out what it actually means.

Fortunately, not everyone is like me. The Maryland Disability Law Center (MDLC) is working with the Disability Rights Education & Defense Fund (DREDF) and NDY in expressing objections and concerns related to this legislation. DREDF worked with the California Foundation of Independent Living Centers (CFILC) to oppose similar legislation in California. Below is the complete written testimony submitted by MDLC yesterday:

January 26, 2009


Honorable Peter A. Hammen, Chairman
Health & Governmental Operations Committee
House Office Building, Rm 241
Annapolis, MD 21401



Re: HB 30

Dear Chairman Hammen and Members of the Committee:

Maryland Disability Law Center (MDLC) wishes to express its concerns about provisions within HB 30, Health-Terminal Condition-Counseling. To the extent that the legislation is intended to provide information on advanced directives, palliative care and hospice care, we have no issue. We are in accord that such information and services should be more widely available. However, we have grave concerns about certain language, definitions and requirements of the bill. As drafted, we believe that persons with disabilities may be pressed to end their lives or have their lives ended in a way not intended by the legislation.

A. Inadequate definitions:

1. Lack of definition for organizations that offer counseling services. HB 30
provides that the care counseling identified in the bill is provided by a hospice provider, health care provider, or “other organization that specializes in end-of-life condition case management and consultation.” There is no oversight, licensing or professional requirement to support the definition of an “organization that specializes in end-of-life condition case management and consultation.” This is extremely problematic as the organization is to counsel people (and their proxies if amendments suggested by the Office of the Attorney General are accepted) about their options, including the right to refuse or withdraw from any life sustaining procedure and to make decisions about treatment. These decisions may have different legal ramifications if all “proxys” are included in the counseling service and the lack of regulation or even definition of the organizations to which medical personnel MUST provide a referral is extremely troubling. (If there are not sufficient hospice services, what organizations will receive referrals? will they be charging fees for their services? will they be qualified to give advice on the rights of a proxy? how are they staffed or trained to provide this critical service? Are they linked to certain religious or philosophical organizations?).

2. Lack of definition of counseling services. HB 30 provides that terminal care counseling may include discussions about outcomes for the patient and about the benefits and burdens of treatment options. As noted above, with no requirement for standards, qualifications or oversight of the organizations providing such services, MDLC is concerned about the ability of such “organizations” to provide accurate information about potential treatments. We are concerned that patients receive information about assistive technology, rehabilitation, and independent living programs that are available to people with disabilities. In addition, MDLC would like to see patients actively encouraged to consult with organizations familiar with assisting patients cope with specific diseases.

B. Reference in law to provide costs of treatment options. HB 30 requires the counseling service to provide referrals to appropriate entities for information on the costs of treatment options for persons facing end of life conditions. Not everyone has equal access to health care. For some, the challenges of payment for support services necessary to live full lives with disabilities are particularly challenging. As obtaining financial support can be a lengthy and complicated process, we are concerned about the focus on this information at a time when a person is being counseled about their end of life options. The bill requires that organizations that specialize in end of life consultation refer the person or their proxy to financial information about the costs of various treatment options. Because people have access to their costs of care at any point in time and because the counseling organizations do not provide this information directly, we would ask that this reference be stricken from the bill. It appears to suggest that people consider a cost benefit analysis to living. Advocates for persons with disabilities are acutely aware that the benefits of life for people with disabilities have been historically undervalued. In our view the reference of the costs of treatment is an issue that is best addressed without the legislation, which only provides a referral back to a health care provider or insurer who already has an obligation to provide this information. The inclusion of this portion of the bill is of strong concern for the subtle and unintended message it may promote. Fears of lost capacity and financial burden compound a scenario wherein people are making difficult decisions. Certainly they may have the financial information upon request without a legislative mandate with its questionable message.

C. Mandatory transfers. HB 30 generally appears to value a person’s ability to make choices about their lives by requiring that certain information be available to them. However, the legislation does not clearly to provide a person the right to remain with their current treatment provider if that provider does not wish to comply with the requirements of HB 30. As drafted, the health care provider who elects not to follow HB 30 “shall” “refer or transfer the patient to another health care provider”. MDLC requests that this language be modified to clarify that a patient is not required to transfer to another provider if they prefer to remain with their existing provider. Continuity of care is especially important for many persons with disabilities, and obtaining care from providers familiar with specific disabilities can be challenging. A person must retain the ability to remain with their provider, regardless of whether the provider chooses to comply with HB 30.

As a final comment, MDLC notes that it has reviewed potential amendments drafted by the Office of the Attorney General (OAG) and does not find the concerns expressed in this letter to be addressed. The amendments seek to expand HB 30. MDLC notes particular concern with two of the proposed amendments.

1. Addition of “end-stage-condition”. The proposed amendment raises great
alarm as applied to persons with disabilities. It simply lacks adequate safeguards. For many persons with disabilities, there is no medical treatment that will reverse their condition. Their disabilities may be progressive or may couple with other illnesses to render them less able or incompetent but those factors alone should not place them at the “end stage” of life. Consider the definition of “end-stage condition”:

“End-stage condition” means an advanced, progressive, irreversible condition caused by injury, disease, or illness:
(1) That has caused severe and permanent deterioration indicated by incompetency and complete physical dependency; and
(2) For which, to a reasonable decree of medical certainty, treatment of the irreversible condition would be medically ineffective.

This definition does NOT require that a person’s death be imminent. There are children, as well as adults, who are not fully competent and who are physically dependant with progressive, illnesses who may be subject to this law by proxy. The definition could include persons with physical disabilities who have dementia or persons with Alzheimer’s or Parkinson’s disease who are not facing imminent death. Given the stereotypes and prejudices that prevail about the poor quality of life for persons with disabilities, we are concerned that people with disabilities or their proxies may find that the required “counseling” is subtly directed towards ending life.

2. Addition of a “proxy”, which means “an individual authorized to make health care decisions for a patient”. Existing law provides certain rights to persons who may be guardians or surrogates or who have authority under a health care power of attorney or an advanced directive. The authority of these persons varies with the circumstances. The proposed amendments, however, state that a “proxy” shall be counseled on their rights to refuse or withdraw life sustaining procedures and to enter a do not resuscitate order. The proxy may also receive information on the costs of treatment options. Without any reference to existing laws, such as the Health Care Decisions Act and the Advance Directives article, it is not clear that those statutory provisions limit the powers of a person deemed to be a “proxy” under this new statute. Cross referencing existing law and clarifying language would be helpful.

In sum, this bill appears to be too broad to effectively accomplish goals that MDLC can endorse. At MDLC we continue to see death certificates that label the cause of death as a person’s disability, such as “Cerebral Palsy” or “Mental Retardation”. These disabilities do not, on their own, cause death and such conditions should not be viewed as terminal. Such references reflect a continued misunderstanding of causes of death for many people with disabilities. In the disability community it is common to share stories where a person with a disability has been told that they have a short time to live, yet the person gets the last laugh by greatly outliving their projected death. The nature of many disabilities and the uncertainty about when a person may be facing death present complicated issues. Compounding this situation is the fact that discrimination or lack of value for persons with disabilities is a significant unresolved social problem in our country. The history of health care for persons with disabilities is replete with examples of horrific treatment based on medical misapprehensions and assumptions about the lack of ability/capacity of persons with disabilities. For the reasons stated, MDLC opposes HB 30. MDLC would, however, endorse legislation to support hospice and palliative care and increased education and outreach for these services as well as increased education and opportunity for advanced directives.

MDLC thanks the Committee in advance for its consideration and deliberation of these important issues.

Respectfully submitted,


Lauren Young
Maryland Disability Law Center

Canada: MPP Gelinas Hopeful Help is on the Way for Minna Mettinen-Kekalainen (Sudbury Star)

The latest on Minna Mettinen-Kekalainen:

MPP hopeful help is on way

From the story:

For the last three weeks, Mettinen-Kekalainen has taken her fight with the CCAC public in media interviews -- even going as far as staging a brief hunger strike to protest the fact she has not been receiving home care.

The CCAC has been unable to say much about the case because of privacy and confidentiality laws, but Mettinen- Kekalainen has been vocal about being asked to sign an agreement with the agency not to threaten or harass home-care workers who visit her.

Mettinen-Kekalainen has said the CCAC interpreted her threat to report nurses for not following her doctor's orders to the Ontario College of Nurses as harassing and abusive behaviour.

When the woman refused to sign the agreement, services were withdrawn, she said, although the CCAC has said it does not deny services to anyone who needs them.

Gelinas became involved in Mettinen-Kekalainen's case after Sudbury Star stories about how the woman was living alone, being fed through a gastric tube inserted in her stomach and not being bathed regularly or having her adult diapers changed.

Mettinen-Kekalainen has been termed a palliative patient by her family physician and she is confined to a wheelchair and hospital bed in her home -- often on life-supporting oxygen.

The article notes that Gelinas is feeling optimistic after getting more involved:

Gelinas, the NDP's health critic, was heartened this week after speaking on the phone with North East CCAC executive director Richard Joly about Mettinen- Kekalainen's case.

While files such as this are confidential, Mettinen- Kekalainen authorized the MPP to have access to personal information to help resolve the dispute.

Gelinas said Tuesday she got involved in the woman's case, although she is not a constituent of her riding, because she didn't want her to go without care any longer.

The rookie MPP acknowledged that Sudbury MPP Rick Bartolucci had done "good work advocating for Minna," but she said her years of working in the health-care industry gave her an advantage in dealing with Mettinen- Kekalainen's case.

"I'm very optimistic we will have been successful."

The article also includes some interesting discussions of the criticisms Gelinas has leveled against the bidding system and bureaucracy in home care services - and the less than gracious reactions to her criticisms by others in government.

Finally, I want to provide clarification about something in a previous post. I referred to MP Judy Wasylycia-Leis as a "self-described NDP Health Critic."

In a comment to the post, I received the following clarification:

To clarify, Ms. Wasylycia-Leis is the MP appointed by her party, the NDP, to act as their official voice in criticising the health policies put forward by the Canadian government, which is currently controlled by the Conservative party.

Ms. Wasylycia-Leis and the official health critics chosen by the Liberal party and the Bloc Québecois are the opposition counterparts to the Minister of Health, who is a Conservative MP.

The person who left the comment also said that my original phrasing - with the use of "self-described" - sounded snide. Reading it again, I can see how it would be interpreted that way. It was not my intention. Rather, it was a combination of typing too hastily and my large amount of ignorance regarding Canadian government. I am sorry for any impression I gave of trying to discredit or disrespect Ms. Wasylycia-Leis. --Stephen Drake

Mike Ervin: Ruben Navarro and Rethinking Donation of My Organs

Most of the time when I find something online that's relevant to the NDY blog, I pull out an excerpt and point people back to the original article. First, because it's written by Mike Ervin, who has written pieces featured in our humor section. This piece isn't exactly humor, but it's something that fits with some concerns I and others have had for quite awhile - those of us who have significant doubts about what we should do about that "organ donor" section on our driver's licenses or ID cards.

And because the site that published this essay is operated by the National Spinal Cord Injury Association (NSCIA), I thought I might have a shot at getting permission to publish the piece in its entirety. In this, I was right. The permission was granted almost immediately, by NSCIA executive director K. Erik Larson. This isn't surprising. NSCIA is an organization that has long combined "traditional" advocacy with support for- and allying with - disability rights activists (like NDY and ADAPT) on cutting-edge issues affecting the disability community.

So, without further delay, here is the latest from our friends Mike Ervin and NSCIA:

Our Top Story: Doctor Acquitted of Hastening Man’s Death to Obtain Organs

By Mike Ervin

It was one of those rare moments in life when we are presented with a no-brainer moral decision. I recently had my state ID card renewed. The woman asked me if I wanted it designated on my card that I want to be an organ donor. I said sure. How selfish would I be to take perfectly recyclable organs to my grave?

But now I want to find out how to officially rescind that decision. In fact, I want to find out if on the back of my card I can write in big red letters KEEP YOUR STINKIN’ HANDS OFF MY ORGANS!!!

It’s all because of the recent acquittal by a California jury of Dr. Hootan C. Roozrokh. He was charged with abuse of a dependent adult and could have gone to prison for eight years in connection with the 2006 death of Ruben Navarro. Navarro’s disability was adrenal leukodystrophy (ALD), which was depicted in the movie “Lorenzo’s Oil.” He was a nursing home resident and one day he was rushed to the hospital because he wasn’t breathing. He was put on a respirator but doctors took him off after only a few days.

Navarro‘s mother agreed to donate his organs and Roozrokh came to harvest them. The goal was to take out Navarro’s organs within 30 minutes after his death, when they are considered to be most beneficial. But when the respirator was disconnected, Navarro didn’t die.

So, according to the case, Roozrokh gave Navarro lethal doses of narcotics. But when he still didn’t die after 30 minutes, Roozrokh gave up and never extracted an organ. Navarro lived for another eight hours.

A prosecutor said Roozrokh “tried to accelerate [Navarro's] death to facilitate the harvesting of his organs.” But a jury didn’t even think the single abuse charge brought against Roozrokh was worthy of any punishment at all.

Navarro’s mother, Rosa, reportedly said, “They mistreated him and they abused him and they took advantage of him and me. He didn’t die with dignity, and I didn’t have the chance to really say goodbye to him. I don’t think its right. These people need to pay for what they did to him.”

But it doesn’t look like anyone but Ruben and his loved ones will pay.

So now I’m wondering. I certainly don’t mind passing my organs on for others to enjoy. But I do want to make absolutely sure I’m absolutely finished using them first. That’s not too much to ask, is it?

But who’s going to watch out for my precious organs if I don’t? I sure wouldn’t count on any jury to do it. Apparently it’s not hard to find 12 people who can be convinced that trying to kill someone with a disability doesn’t even rise to the level of abuse.

Published: 2008-12-22

Republished from the NSCIA website with permission of the National Spinal Cord Injury Association (NSCIA). 1-800-962-9629 www.spinalcord.org

More on Minna Mettinen-Kekalainen

First, over the weekend, Minna's denial of in-home support went from a regional story to a national one in Canada. The Canadian Press picked up her story and it is now being disseminated all over Canada. This is a link to the story on Metronews.ca.

Encouragingly, this story focuses on the consequences of Minna's withdrawal of personal care, and on the determination of MPP France Gelinas, quoted in Friday's blog entry, to see this through and also to determine how many other people are being affected similarly:

She hopes for a speedy resolution so Mettinen-Kekalainen can live out her life in dignity, but Gelinas said Mettinen-Kekalainen's plight is symptomatic of a broken system.

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, 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, no benefits and no pension plans, which does not attract top quality nurses, she said.

"Our home care system is broken," Gelinas said. "And why is it broken? Because of the bidding system. This is not the way to provide care."

I received email this morning from Minna and it looks like she's reaching out to a disability rights lawyer who expressed interest in getting involved in some way.

And, oddly, I received email from Judy Wasylycia-Leis, and MP and self-described "NDP Health Critic." Odd, because she thanks me for contacting her when I cannot for the life of me figure out when or how I did so.

No matter. What's really important is the part of her email where she says that she has alerted others in government. Specifically, she writes that she has contacted Glenn Thibeualt, who she informs me, is Tudbury's MP.

At the risk of sounding uncharacteristacally optimistic, things are looking up and Minna (and maybe others) can get the support she needs and is currently doing without.

Please refer to past posts on ways to keep up vigilance and pressure. --Stephen Drake

Canada: Updates on Minna Mettinen- Kekalainen

Several new developments since yesterday - or some new aspects to ones already in the works.

First, as I'm writing this, students are staging a protest in Sudbury to raise awareness and keep the pressure up in regard to Minna Mettinen- Kekalainen and the total lack of care and support she is living with as she struggles with advanced ALS.

From yesterday's Sudbury Star, is the story "Community to protest patient's plight":

Laurentian University social work students will stage a day-long protest Friday to keep attention focused on the plight of a Sudbury woman with ALS who says she is being denied home-care services she desperately needs.

The students will demonstrate in front of Sudbury MPP Rick Bartolucci's office from 8 a. m. to noon, then march to the North East Community Care Access Centre in the Rainbow Centre for a demonstration until 4 p. m. to raise awareness about the case of Minna Mettinen- Kekalainen.

Bartolucci, mentioned in the article above, has responded in a way that has been less than satisfactory. Fortunately, another MPP (MPP = Member of Provincial Parliament) has decided that someone needs to step up to the plate:

New Democrat Health critic France Gelinas is determined to get to the bottom of a dispute between the North East Community Care Access Centre and a woman who says she is being denied home care.

Minna Mettinen-Kekalainen, 42, who has ALS, says the centre is refusing to provide her nursing and personal support care after she threatened to report nurses hired by a contract agency of the centre for failing to follow her doctor's orders.

Why did it take her this long to get involved? Simple. Minna is actually represented by a different MPP - that would be Mr. Bartolucci, mentioned above.

Gelinas, the Nickel Belt MPP, says she can't stand by and watch Mettinen-Kekalainen struggle on her own. She said she was reluctant to get involved at first because the woman lives in the Sudbury riding represented by Liberal MPP Rick Bartolucci.

The rookie MPP said she tread carefully when Mettinen- Kekalainen's story first appeared in The Star two weeks ago, but Thursday she said she has waited long enough for a resolution.

For an example of unimpressive representation, here are some quotes from Mr. Bartolucci's office:

When contacted in Toronto on Thursday, an aide to Bartolucci, who is also Community Safety and Correctional Services minister, said Bartolucci was not available for comment.

Laura Blondeau said while Bartolucci "cannot publicly discuss details of the case, Mr. Bartolucci is very confident that his constituency office staff has bent over backwards to help this individual. He has closely monitored the situation and is certain that everything that can be done by his office, is being done.

"This is consistent with the approach Mr. Bartolucci and his dedicated constituency staff demonstrate on a daily basis," said Blondeau in a written statement. (emphasis added)

Was the irony in this official statement intentional, or is it just me?

More here from MPP Gelinas:

Gelinas said she does not blame the centre for denying care to the Sudbury woman, but is angry at the private nursing agency that is refusing to provide care.

Private agencies "have refused care to a whole bunch of people and now they feel entitled to do that," said Gelinas, a harsh critic of for-profit nursing agencies being hired by community care access centres across the province.

"How can they do this? It feels like if a client is difficult, and if there is no money in it, they say, 'The heck with her.'

"If a woman as outspoken as Mettinen-Kekalainen is being denied home care, "how many frail seniors are being denied care?" asked Gelinas.

To me, this is the most promising development to date. Gelinas is not only advocating for Minna, but treating her as the visible tip of a large iceberg - a large group of neglected people who aren't prone to raise a fuss and just suffer in silence.

I'd also like to recommend this op-ed by Carol Mulligan, the reporter who has been writing the articles about Minna's situation and her struggles. Here's a sample:

ALS is eating away at Minna Mettinen-Kekalainen's body, but it would not surprise me if she died of a broken heart. As I lace up my boots and leave her home, I cannot imagine leaving a sick dog alone in conditions like those in which I am leaving Minna.

If she were an animal, I could call animal welfare authorities to rescue her. It's not that easy to find help for a desperately ill woman.

While I always get a little queasy when animal metaphors are used in relation to humans - especially old, ill and disabled humans - this is a refreshing change from the "we'd put a dog down if she were like this" that I am used to reading.

Not only that, but she's right. There seems to be an explosion in "no-kill" shelters for abandoned, neglected and abused animals. Be nice to see a similar move in that direction for humans. --Stephen Drake

Canada: Woman Goes on Hunger Strike After Being Denied Basic Care - Help Needed

Yesterday, I checked the blog ballastexistenz (which I do about once a week) and found an urgent plea from Amanda Baggs regarding a friend in dire straits.

The urgent plea dealt with a friend, living in Sudbury, Ontario. Minna Mettinen-Kekalainen is 42 years old. She has aspergers and ALS. She needs daily care and support for basic physical needs - such as bathing and getting her adult diapers changed. Minna isn't getting that care.

Driven by sheer despair and exhaustion over living without needed support, she went on a hunger strike, refusing to let friends give her the nutritional supplements she needs to live.

Her story was told - badly, in places - in the Sudbury Star.

Obviously, I didn't blog about this yesterday. Like many other individuals, I decided to heed Amanda's plea:

But I have a request for anyone with any power to do anything about this:

Don’t get bogged down in how sad you feel about what is happening. Don’t — if you can do anything more — just write about this. Don’t treat her death as the only inevitable conclusion in all this. Find a way to pressure the right people until Minna gets her services back, free of abuse/neglect and free of coercion to avoid reporting abuse/neglect.

You might not believe it can work, but it can — I’ve done it. This is someone’s life here and something can be done. I know because I’ve put pressure like this on agencies myself on behalf of others — and a hospital suddenly started providing appropriate care to one person, a home nursing agency started providing appropriate care to someone else. (This is a lot of what I do when I’m not on the Internet.) Often what they need to know is that you are watching and that the consequences for them of not providing appropriate care will be worse than the consequences of providing appropriate care. They won’t necessarily do this for any of the right reasons, but find a reason for them to do it and then put as much pressure on as you have to.

A lot has happened over in less than 24 hours. There has been increased pressure on the agencies involved to give Minna the support and care she needs and deserves. Some students have organized a protest on her behalf.

Importantly, for now, at least, Minna is encouraged enough to have ended her hunger strike. I have exchanged a few emails with her and so have others.

That doesn't mean we can let this rest, though. Unless she gets the support she needs, she'll surely be right back where she was. Some terrific folks have put together some tools and suggestions to help change this situation.

Andrea Shettle at ReunifyGally has put together a great list of suggestions and resources for helping in this effort. I am reproducing it here at her open invitation which is included at the end of her blog post:

We in the disability human rights community have an opportunity to save a life. A quick summary: a woman with disabilities in Sudsbury, Ontario, Canada (Minna Mettinen- Kekalainen) is SUPPOSED to be receiving home care services. The North East Community Care Access Center has been denying her these services. Minna says this is because she had complained about their nurses because they had failed to follow her doctor’s orders. Minna was on a prolonged hunger strike, starving herself to death in an attempt to pressure the CCAC to provide her the services she needs. She has started eating again, at least for now. But she is still being profoundly neglected. Please take a few minutes to support efforts among disability rights activists to save her life.

1. First, read more about the situation at the following two links. You will also want to read the comments that people have left, because people are using the comments area at this blog page to exchange more information and ideas on how people can help: http://ballastexistenz.autistics.org/?p=572 and http://ballastexistenz.autistics.org/?p=573

2. Send an email to the following people to urge them to intervene on Minna’s behalf so she can receive the home care services that she is asking for: Sudbury MPP Rick Bartolucci Constituency Office email: rbartolucci.mpp.co@liberal.ola.org

Ministry of Community Safety & Correctional Services email: rick.bartolucci@ontario.ca

Minister of Health & Long-Term Care David Caplan: ccu.moh@ontario.ca

Non-Canadians can use these email addresses, too. If enough individual people write to them, they may take notice.

3. Consider also communicating with the North East Community Care Access Center on Minna’s behalf. This is the center that is refusing care to Minna (unfortunately there seems to be no email contact for them):

North East Community Care Access Centre (the centre that is refusing care to Minna)
Head Office/Sudbury Branch
1760 Regent Street
Sudbury ON P3E 3Z8
(705) 522-3461 or 1 (800) 461-2919 (Sudbury

To access the Long-Term Care ACTION Line call: 1-866-876-7658 or TTY: 1-800-387-5559.

(More detail on their Complaints and Appeals Process at http://tinyurl.com/aeu6vt)

4. Also consider communicating with the Maison Vale Inco Hospice–this is a different place (NOT related to the North East Community Care Access Center), and Minna would like to be admitted there.

Maison Vale Inco Hospice (the place Minna hopes to gain admittance to)
(705) 674-9252
1028 South Bay Rd. Sudbury, ON P3E 6J7
Website: http://www.maisonsudburyhospice.org/
Resident Care Coordinator Elaine Klym: elaine@maisonsudburyhospice.org
Executive Director is Léo Therrie

5. If you will be in Ontario on January 23, consider joining a protest and march on Minna’s behalf.

6. Join the Facebook group, “Minna’s Hunger Strike–Call to Action for an ALS Patient Denied Care” to learn the latest news on what is happening with Minna’s case and what people are doing to help. If you are not already a member of Facebook, it only takes a few minutes to sign up for a free account.

7. Please circulate this text further via your network of contacts in the disability and human rights communities, Facebook page, blog site, etc.

Thank you for taking action.

Finally, if you would like to hear from Minna in her own words, she has put up a nicely accessible section on YouTube, with the transcript of what she says included in a sidebar on the left of the screen. You can find it at the Sudbury CCAC exposed channel.

With your help, this woman can get the help she needs to live her life.

Please come back for updates as they become available. --Stephen Drake

Request to remove life-support from 6-Month-Old in Texas Withdrawn for Now - Texas NDY

On Monday this week, NDY was contacted by Texas attorney Jerri Ward, who has worked extensively on behalf of families and patients in fighting the aggressive implementation of "futility" policies in Texas.

The subject of the call was an impending court hearing in Dallas County juvenile court to decide on a petition by a court-appointed guardian to allow withdrawal of life-support from six-month-old David Coronado. David was allegedly the victim of severe abuse at the hands of his parents.

Here's a summary of the rationale for removing life support from this infant from the January 17th edition of the Dallas Morning News:

On Monday, the infant's court-appointed guardian filed a motion in Dallas County juvenile court asking that doctors at Children's be permitted to remove David Jr. from life support.

The motion, noting that the parents "have not consented to withdrawal of support," argues it is in his best interest. Court records describe him as "neurologically devastated."

If this sounds familiar, it should. This is even milder language than that used by the Department of Human Services in Massachusetts to justify the removal of life-support from Haleigh Poutre, who was also apparently abused and written off as "virtually brain-dead." As anyone familiar with the case knows, the accused abuser challenged the removal of life-support, delaying the action long enough so that by the time Poutre was "granted" the "right" to die with "dignity" she had already shown signs of awareness and improvement.

(I wondered in the Poutre case - and in this one - if part of the dynamics relate to the desire to nail the accused abusers with murder charges. The only trouble with that is that you have to have the kid die to level a murder charge.)

Fortunately, in this case, we have a reprieve for David Coronado. Here's part of the story, as related in today's edition of the Dallas Morning News:

The fate of a brain-damaged 6-month-old Dallas boy is uncertain after his court-appointed attorney on Tuesday withdrew a motion to let doctors take the baby off life support.

But the fate of his parents, arrested last month on child abuse charges, may hinge on whether David Coronado Jr. survives his horrific injuries.

The baby's attorney ad litem, Holly Schreier, told a juvenile district court judge that doctors at Children's Medical Center Dallas had assessed a change in the baby's condition. She did not say what the change was, and she did not return a call for comment.

A doctor reported in December that he expected David to suffer severe disabilities if he survived. It is unclear if doctors now expect the baby to remain in a vegetative or minimally conscious state.

Meanwhile, word of the possible hearing on withdrawing the child's life support had spread over the weekend among right-to-life and disabilities-rights groups, at least one of which readied attorneys to intervene Tuesday morning.

"Brains are very resilient, and in a 6-month-old baby, to conclude that he's neurologically devastated and is going to stay permanently that way I think is irresponsible," said Jerri Lynn Ward, an attorney representing Not Dead Yet, a disabilities-rights group. (emphasis added)

Schreier's motion to allow support to be withdrawn did not explain her reasoning, other than to say that it was in the baby's best interest and that she had discussed the issue with doctors at Children's.

As the article shows, the result of that call was to arrange for Jerri Ward to represent the Texas chapter of NDY as intervenors in the case.

Here's the thing, though. The withdrawal of the motion by the attorney ad litem wasn't unexpected.

The day before the hearing (which was cancelled), Bob Kafka (national ADAPT organizer and organizer of Not Dead Yet of Texas) emailed the following to the Executive Commissioner of Texas HHS (and cc'd to several activists/advocates concerned with futility issues):

Though we are still getting information our understanding is that CPS is going to court tomorrow to have life supports withdrawn. If as we have been told this is occurring because of severe cognitive involvement it raises major red flags. I know you have confidentiality requirements would appreciate any info you can provide.

By late that evening, Kafka and other recipients of the email were informed that "additional information" had been received, the motion had been withdrawn and that CPS hadn't taken any action to remove life support.

Bob says there's no way to tell if his email had anything to do with the withdrawal of the motion. OTOH, I am sure it didn't hurt.

It also puts Child Protective Services and the hospital on notice - there are people who care very much how this child's life is handled. --Stephen Drake

Addendum: Reporter Steve Thompson (who reported on the Coronado case) writes on the Dallas Morning News' "Crime Blog" and he has a little more on the motion that was withdrawn - turns out that the phrase "for now" was well-advised:

The attorney/guardian ad litem told the judge that the baby, David Coronado Jr., had had a change of condition. She did not say what the change was.

"Withdrawing" a motion, I'm told, doesn't make it go away. It just means that it won't be heard right then. So, since it may come into play again, I thought people might be interested in reading it.

He's reproduced the motion from his notes on the blog, which you can read here.

Celebrating Benjamin Franklin's Contributions to PWDs - Technology and Satire

Benjamin Franklin was born on January 17th, 1706 (if you want to be picky, it was January 6, 1705 by the "Old Style" calendar system in effect when Franklin was born).

So this Saturday is the 303rd anniversary of his birth.

It's a good excuse to devote a little time and space to one of the most brilliant men ever born on this continent.

Franklin's accomplishments cover way too much territory to cover in a single blog entry - and I'm pretty sure that wouldn't be the kind of thing people come here to read, anyway.

So I'll share just a few things today that are pertinent to the lives of people with disabilities, illnesses and aging issues. After that, I'll share his contribution to NDY concerns.

In response to a request from his seriously ill older brother, Franklin designed the first flexible urinary catheter ever used in the Colonies. As Franklin got older and experienced age-related limitations, he invented more useful devices. As his eyesight weakened, Franklin developed a need for two separate pairs of glasses - and grew tired of switching between them. This frustration led to his invention of bifocal glasses, simply cutting the tops and bottoms of his lenses from each pair and joining them together.

Franklin loved to read and had a large library. As he got older, climbing a ladder to get books on high shelves was no longer something he could do easily - or at all at times. He invented a mechanical reaching device for grabbing books off high shelves he referred to as the "long arm."

Franklin was a talented and prolific writer. Much of what he wrote was published under pseudonyms for various reasons. In 1776, the Continental Congress sent Franklin to France as an ambassador - in an ultimately successful attempt to garner military and financial support for the war between the Colonies and England.

Franklin kept up his writing efforts while working in France. One of his most famous pieces, The Sale of the Hessians, was published in 1777. Here's Walter Isaacson's introduction to the piece in his book A Benjamin Franklin Reader (p.271):

Franklin also waged a propaganda campaign, and the device he often used, once again, was that of satire. Along the lines of his Edict from the King of Prussia, Franklin published anonymously what purported to be a letter to the commander of the Hessian troops in America from a German count who got paid a bounty for the death of each of the soldiers he sent over. Because Britain had decided not to pay for any wounded soldiers, only for those who died, the count encouraged his commander to make sure that as many died as possible.

Finally, at last, you might get an idea what Benjamin Franklin is doing here on the NDY blog. Below is the opening to Franklin's "Sale of the Hessians":

FROM THE COUNT DO SCHAUMBERGH TO THE BARON HOHENDORF,
COMMANDING THE HESSIAN TROUPS IN AMERICA

Rome, February 18, 1777
MONSIEUR LE BARON: -- On my return from Naples, I received at Rome your letter of the 27th December of last year. I have learned with unspeakable pleasure the courage our troops exhibited at Trenton, and you cannot imagine my joy on being told that of the 1,950 Hessians engaged in the fight, but 345 escaped. There were just 1,605 men killed, and I cannot sufficiently commend your prudence in sending an exact list of the dead to my minister in London. This precaution was the more necessary, as the report sent to the English ministry does not give but 1,455 dead. This would make 483,450 florins instead of 643,500 which I am entitled to demand under our convention. You will comprehend the prejudice which such an error would work in my finances, and I do not doubt you will take the necessary pains to prove that Lord North's list is false and yours correct.

The court of London objects that there were a hundred wounded who ought not to be included in the list, nor paid for as dead; but I trust you will not overlook my instructions to you on quitting Cassel, and that you will not have tried by human succor to recall the life of the unfortunates whose days could not be lengthened but by the loss of a leg or an arm. That would be making them a pernicious present, and I am sure they would rather die than live in a condition no longer fit for my service. I do not mean by this that you should assassinate them; we should be humane, my dear Baron, but you may insinuate to the surgeons with entire propriety that a crippled man is a reproach to their profession, and that there is no wiser course than to let every one of them die when he ceases to be fit to fight.

Anyone who is interested can read the rest of the letter here.

Franklin was a pragmatic man who was all too familiar with both the great potentials and equally great faults existing side by side within the human character. This piece worked because - even if no one believed the "Count" would actually write something like this - they could well believe that the letter could be an accurate reflection of his true sentiments. The idea that a person's value or worth was limited to their ability to serve their state or ruler wasn't exactly was probably more fact than fiction in Europe in those days.

Franklin was perhaps the only founding father with a well-developed sense of humor. A surprising amount of what he wrote is still readable, funny and relevant to our own world and changed language. Satire has been an important part of American cultural and political discourse. Any of us who use satire as an advocacy tool have a tie to Franklin and a debt of gratitude for showing us the way. --Stephen Drake

The Spoof: Euthanasia Man Wanted to Live

The Spoof is a web publication specializing in satire and humor. Quality-wise, I've found it to be kind of hit-and-miss, but that's not necessarily a bad thing. Edgy humor can sometimes miss the mark - or at least end up not hitting everyone who reads it as funny.

Spoof writer MonkeyInTheBath decided last year's seemingly never-ending stories about elderly, ill and disabled Brits going on one-way Swiss suicide trips were overdue for some satirical treatment:

Euthanasia man wanted to live

A man was killed by his family because they believed he wanted euthanasia to end his suffering.

Mr Dan Kilmeov was taken by his family to a clinic Switzerland where doctors administered life-ending medicine, more commonly known as poison.

It is thought that Mr Kilmeov's wife misinterpreted a comment he made, when he said "Oh, I could die for a curry right now". Mrs Kilmeov immediately booked flights to Switzerland and had her husband killed. She had help from the euthanasia promotions company, DignityMyAss.

There's more to the article, but you should go read the rest of it here.

This article was published in early December. I can't wait to see if MonkeyInTheBath or some other Spoof writer tackles the latest about the accusations of profiteering leveled against Dignitas (aka "DignityMyAss"). --Stephen Drake

Seattle Weekly - "Terminal Uncertainty"

Just out today, the Seattle Weekly has an in-depth article exploring the uncertainties surrounding a medical prognosis of having six-months to live and its implications for impending legislation for legalization of assisted suicide in Washington state.

From the article:

The law has deeply divided doctors, with some loath to help patients end their lives and others asserting it's the most humane thing to do. But there's one thing many on both sides can agree on. Dr. Stuart Farber, head of palliative care at the University of Washington Medical Center, puts it this way: "Our ability to predict what will happen to you in the next six months sucks."

Reporter Nina Shapiro shares the somewhat "arbitrary" selection of a "six months or less" to live for assisted suicide legislation following Medicare guidelines for hospice eligibility. Here are the hoops Shapiro says doctors have to jump through to justify hospice for their patients:

To do so, doctors fill out a detailed checklist derived from Medicare guidelines that are intended to ensure that patients truly are at death's door, and that the federal government won't be shelling out for hospice care indefinitely. The checklist covers a patient's ability to speak, walk, and smile, in addition to technical criteria specific to a person's medical condition, such as distant metastases in the case of cancer or a "CD4 count" of less than 25 cells in the case of AIDS.

OTOH, the process for OKing assisted suicide is a lot less complicated:

No such detailed checklist is likely to be required for patients looking to end their lives in Washington, however. The state Department of Health, currently drafting regulations to comply with the new law, has released a preliminary version of the form that will go to doctors. Virtually identical to the one used in Oregon, it simply asks doctors to check a box indicating they have determined that "the patient has six months or less to live" without any additional questions about how that determination was made.

According to studies described in this article, roughly 20 percent of patients in hospice die at about the time their doctors say they will. Between 13 and 20 percent die after the time predicted by their doctors - some months or years after the date. The majority die sooner than the prognoses given by their doctors indicated.

But that's just if you look at the population of hospice patients as a whole. Zeroing in on certain conditions yields some interesting data:

When a group of researchers looked specifically at patients with three chronic conditions—pulmonary disease, heart failure, and severe liver disease—they found that many more people outlived their prognosis than in the Christakis study. Fully 70 percent of the 900 patients eligible for hospice care lived longer than six months, according to a 1999 paper published in the Journal of the American Medical Association.

So, given all that uncertainty, what will doctors do? Some won't participate. Others will only prescribe lethal medications to patients with a prognosis of a month or two to live.

Alarmingly, other doctors have a different way to deal with the dilemma:

The UW's Farber leans toward a different approach. While he says he hasn't yet decided whether he himself will write fatal prescriptions, he plans at least to refer patients to others who will. Given that prognostic precision is impossible, he says, "I personally just let go of the six months." Instead, he says he would try to meet what he sees as the "spirit of the law" by assessing that someone is "near" the end of their life, so that he could say to them, "You're really sick and you're not going to get better."

Knowing exactly when someone is going to die, he continues, is not as important as knowing when someone "has reached the point where their life is filled with so much suffering that they don't want to be alive."

In other words, according to Farber, the letter of the law and the strict guidelines that were promised aren't important - or anything he's obliged to follow. It's probably not too big a leap to assume that some doctors in Oregon have already adopted that mindset (the article contains some good information the Oregon law makes it impossible to know how many people live long after getting a lethal prescription).

As I've noted elsewhere, "strict safeguards" are no better than posted speed limits on a highway. Farber and others of his profession know they don't have to worry about monitoring or enforcement on this particular "highway."

In the end, Farber is exposing what is already obvious to those of us who have watched and argued with the assisted suicide/euthanasia movement - this has nothing to do with medicine or a physician's duties. It's a value judgment, plain and simple. A lethal one. --Stephen Drake

Peter Singer's "Tribute" to Harriet Johnson - and Paul Longmore's Response

On December 28th, the NY Times Magazine published an edition titled "The Lives They Lived," which consisted of 24 essays about notable people who passed away in 2008. One of the individuals selected for inclusion in the issue was disability rights lawyer/activist/writer/lecturer Harriet McBryde Johnson.

Not long after that, Paul Longmore, historian and Director of the Institute on Disability at San Francisco State University, wrote a message to a large number of people in his address book:

Colleagues and Friends:

This past Sunday, the New York Times Magazine carried obituaries on people who died during 2008. One of the obituaries was about Harriet McBryde Johnson, disability rights campaigner and challenger of philosopher Peter Singer. Yet the Times had Singer write that obituary. http://www.nytimes.com/2008/12/28/magazine/28mcbryde-t.html?ref=magazine. I sent the letter below to the editor a few minutes ago. I urge everyone who regarded Harriet as one of our most important leaders to register their outrage.

As I am sure others did, I waited for the NY Times Magazine to print Longmore's letter. The wait was in vain. Last Sunday, two responses to Singer were published, and I don't want to take away from the authors, who made some good points. But they weren't the points made in the letter submitted by Longmore, whose critique is blunt and brutal. Here it is, published with permission:

Having Peter Singer write an obituary about Harriet McBryde Johnson seems so reassuring. We can have a calm, rational, even friendly discussion about "killing" people with disabilities. That's Mr. Singer's word and that's his ethical and legal position. He thinks parents should have the right to have their disabled babies killed. And that's what my comrade in disability rights activism Harriet fiercely opposed. In this short piece, Mr. Singer demonstrates that while he learned a couple of things about the real lives of people with disabilities from his encounters with Harriet, he still does not understand the meanings and values and imperatives of her life, or, for that matter, the lives of the rest of us who live with significant disabilities. If he did, he wouldn't question surveys which find "that people living with disabilities show a level of satisfaction with their lives that is not very different from that of people who are not disabled." And though the magazine's editors published a couple of Harriet's articles, you expose your failure to understand her and her message by offensively headlining this piece "Happy Nevertheless." In the end, Mr. Singer still thinks that Harriet's parents should have been able to prevent her from living her life, from having her life at all, a life that championed the dignity and value of all people's' lives. So the Times, which a long time ago editorialized in favor of a disabled person's right to have a doctor help her commit suicide ("Condemned to Life," April 24, 1986), gives Mr. Singer the last word in his debate with Harriet and enables him portray himself as open-minded, tolerant, and humane. Meanwhile, we who mourn the loss of our Harriet must regard this obituary as not just falsifying but obscene.

A few weeks ago, there was an article saying that the print version of the NY Times could actually come to an end within the next year. This produced a lot of warning calls from (big surprise) professional journalists that our society could suffer without the benefit of classically trained journalists.

Me, I'm not convinced. I don't see where the NY Times or other big newspaper has really ever "gotten" disability. Maybe it's time to try something new. --Stephen Drake

Emergency Workers Accused of Letting Man Die - And then the Media Engages in a Posthumous Assault

U.K. -- This news is making the rounds of blogs and newsgroups. Two ambulance workers in the U.K. have been suspended from work and booked on charges of "neglecting to perform a duty" in a case that initially caused shock. One of the earliest news stories about the incident came out on December 31, from The Press Association:

Two ambulance workers were arrested on suspicion of neglecting a dying man after detectives were passed a tape recording of them in which they were allegedly heard discussing whether they should bother to revive him, it has been reported.

The two men, who are both employees of South East Coast Ambulance Service NHS Trust, were sent to Barry Baker's home in Brighton, East Sussex, on November 29, after he called 999 saying he thought he was having a heart attack.

It is understood the 59-year-old, who lived alone, collapsed while on the phone to ambulance controllers.

However, the line to the control centre was still open when the crew arrived at the scene and operators allegedly heard the ambulance men make derogatory comments about the state of Mr Baker's house, The Daily Telegraph reported.

A police source told the newspaper the men were then overheard discussing Mr Baker and allegedly saying "words to the effect that he was not worth saving".

The pair, aged 35 and 44, were arrested on December 5 on suspicion of neglecting to perform a duty in a public office contrary to common law.

No formal charges have been made against the two men.

Initially, the reaction of the journalists and the public seemed to be one of shock and horror. But then something happened. The company hired to clean up Mr. Baker's house posted public pictures of the inside of his house on the web. (if you check out that link, you'll find that SkyNews refers to Mr. Baker with scare quotes around the word "neglected" when referring to the circumstances of his death)

That site is only one of many news sites that posted the pictures and focused on the "squalid" condition of the home. In many of those sites, comments are dominated by people expressing disgust for Baker and not a little sympathy for the ambulance workers.

I'll say right upfront that this angers and scares me. I have known people whose houses looked like this on the inside. At a few points in my life, my own living conditions have been close to the scenes pictured at that house. I wish I was exaggerating, but I'm not.

As far as the media goes, only Deborah Orr of The Independent seems disturbed by the latest turn in the press coverage of Mr. Baker, and thought it worth the effort to tell readers about the life that Barry Baker actually led:

Barry Baker did not lead a scrupulously conventional life. And his lack of convention was not, in anyone's terms, rebellious, glamorous or bohemian. On the contrary, at 59, he still lived alone in the childhood home he had shared with his parents until they had died. Overweight, he'd had hip operations, and walked using sticks. His poor health, perhaps in combination with the years of dependency on his parents, contributed to the disordered messiness of his home.

Baker's life may have had its limitations. But he did his best. He took a taxi to work every day, at a Job Centre in Brighton, and travelled by bus every Sunday to his favourite pub, where he had lunch with friends and played cards. All of his neighbours described him as a kind and gentle man.

As I've done before, I want to direct people to William Peace at Bad Cripple. Here's a snippet:

However, my next thought was are these photographs relevant? What, if any, was the point of releasing these photos? Why did the company hired to clean Mr. Baker's home after he died post the photos on their website?

The answer to the above questions is clear to me: the worth of Mr. Baker's life is being called into question.

Read the rest of his excellent post here. --Stephen Drake

UK: Disability Campaigners Press For Law Enforcement on Assisted Suicides

As readers of this blog and others covering similar issues will know, there has been a lot of intense media attention and promotion on assisted suicide in the U.K. In spite of "right to die" advocates' claims of a narrow agenda, the media circus hasn't been limited to people in the last stages of a terminal illness.

Here are some excellent observations and analysis from disability campaigners, courtesy of communitycare.co.uk:

It is the James case that has raised the most moral issues. The DPP (director of public prosecutions) statement says that, despite "sufficient evidence" to prosecute James's parents, based on the facts of the case it "would not be in the public interest" to do so.

James had been disabled for 18 months before his death and had made three attempts to kill himself. A psychiatrist found that James was both clear in his wish to die and understood that this was against everybody else's wishes. His parents, along with health professionals, had repeatedly tried to talk him out of wanting to commit suicide at Dignitas, but to no avail, and so eventually decided to help him.

Jane Campbell, chair of the disability committee at the Equality and Human Rights Commission, believes the case sends out a dangerous signal. She says that while it may seem like a personal matter the drip, drip effect of letting such cases go has big implications for society.

"While I completely understand the family have to live with the consequences of their actions, [the Crown Prosecution Service] has got to start prosecuting otherwise it sends out a message that it's OK to help people die," she says.

Both Carr and Campbell express some healthy skepticism about the claims from "right to die" advocates that their agenda is limited to individuals with some sort of terminal illness, and more:

Dignity in Dying is campaigning for the law to be changed only for the terminally ill and doesn't support such a move for disabled people. Hehir says the organisation sees the two groups as very separate.

Carr disagrees. She says the James case shows the debate is not just about terminal illness but also about disability and that society's negative view of disabled people means any change in the law for the terminally ill would be in danger of being extended to this group.

"In a world that valued disabled people and their lives maybe the legislation could be safe for just terminal illness but it's not," she says.

For Campbell, assisted suicide is wrong in both instances: "While we continue to live in a world where disability or end-of-life care are seen as negative, we will never get to a situation where people can take their own lives in a non prejudicial way," she says.

Like disability advocates all over the world (including the U.S.), advocates like Carr and Campbell already have their hands full advocating for resources that people with disabilities need to live. Not for the first time, they're having to find more time and energy to advocate against policies that "compassionately" encourage people with disabilities to die. --Stephen Drake

Breaking News - Swiss Euthanasia Organization Being Investigated for Possible Profiteering

This just coming out of Switzerland, by way of The Telegraph in the U.K.:

Dignitas, which is meant to be a non-profit organisation, is being forced to open its accounts to prosecutors in Switzerland and disclose how much money it is receiving from its controversial business of assisting suicide.

The founder of the group is reported to have become a millionaire by helping at least 870 terminally ill people – an estimated 100 of whom were British – die. It is said to have taken as much as £61,000 from one woman, 10 times its usual fee.

This isn't the first time profit motive has been tied to the "compassionate" acts of serial "mercy killers." Filmmaker Jon Ronson followed George Exoo for a documentary that aired in the U.K in the first part of 2008. Exoo had recently taken on a "helper" and taught her the ins and outs of connecting with people and helping them kill themselves.

In an article from The Guardian, Ronson relates some information Susan (the pseudonym Ronson gives here) tells him while they're alone:

Exoo drove off to do some real estate business and I was left alone with Susan. We sat on her porch. And she said something extraordinary. She said that unbeknown to Exoo she had set up her own suicide business and was willing to help practically anyone if the price was right.

"I see this as a business," she said. "George sees it as a calling. There's a big difference there. For me it's no cash, no help." She said her price was approximately $7,000.

"You're bound to get it wrong, aren't you?" I said. "And help someone who shouldn't be helped."

Susan shrugged. "Probably, at some point, yes," she said.

I guess that there are folks (Ronson was one of them) who are shocked to find such blatant bottomfeeders as "Susan" in the euthanasia movement. That's just because they don't know the movement well enough.

Back to Switzerland and the current story on Dignitas, there's this "bring it on" tidbit from the head of the organization - Ludwig Minelli:

"If the state prosecution feels I'm making myself rich, they should start legal proceedings."

Minelli probably doesn't follow news in the U.S., or he might take a more cautious tone. The day before being hauled into court to face federal charges of corruption, Illinois Governor Rod Blagojevich invited anyone to listen in on his private conversations any time at all - he had nothing to hide.

Turns out the feds had been listening for quite awhile and the good Governor should have left some things he said unspoken.

I look forward to Ludwig Minelli facing the same consequences of Hubris in the near future. --Stephen Drake