NDY Discussed at “Bisexuality Across Cultures Event” – the Message AND the Messenger Matter!

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I was at a conference last week and will be writing about that later today. In the meantime, I wanted to share a few excerpts from Indybay.org, about a “Bisexuality Across Cultures” event held on May 27th.

Assisted suicide, euthanasia and NDY came up in this event. Here’s the intro:

The Bisexual Forum of San Diego County hosted an event May 27 called “Bisexuality Across Cultures” that highlighted self-identified Bisexuals from Europe, Mexico and the community of people with disabilities. They compared notes and found that Americans have a much more rigid concept of “sexual orientation” than people in other countries, and Bisexuals with disabilities face the disinclination of many Americans to believe that people with disabilities have sex lives at all. The speaker representing people with disabilities spoke of a “hierarchy of discrimination” in which people of color are more privileged than Queer people, who in turn are more privileged than people with disabilities, and also attacked so-called “assisted suicide” laws for devaluing the lives of people with disabilities.

Incredible quote from Bisexual Forum board member Jennifer Wrestle at the end of this particular part of her discussion of the “hierarchy of discrimination.”:

Restle discussed her own situation as a blind Bisexual woman and said there’s what she called “a hierarchy of discrimination,” in which some groups victimized by discrimination are nonetheless more socially privileged than others. According to Restle, racial and ethnic minorities are at the top of the hierarchy of discrimination; Lesbian, Gay, Bisexual and Transgender people are in the middle and people with disabilities are at the bottom. To prove her point, she noted that people frequently say they’d “rather be dead” than have to live with being disabled, “so in a way we’re even below dead people.” (emphasis added.)

Finally, the end of the article is devoted to Restle’s comments on assisted suicide, euthanasia and NDY:

The conversation took an unusual turn when Restle was asked about the suicide rate among Queer disabled people — and her answer tapped into the whole controversy over euthanasia and assisted suicide. This debate is usually presented similarly to the contest over abortion — between support for people’s “right to choose” and opposition based on a “pro-life” religious or moral commitment — but, as Restle explained, many people with disabilities fear the legalization of assisted suicide because “a lot of people encourage us to kill ourselves.” She mentioned that within the disability community there’s an organization called Not Dead Yet, which mobilizes against laws allowing assisted suicide because they fear such laws will be used to pressure people with disabilities into believing they have, not a “right,” but a duty to die to spare taxpayers and society as a whole the costs of taking care of them.

I have no doubt that Restle was able to make a dent in the assumptions and biases in her audience that assisted suicide and euthanasia are thornier issues than simply matters of “choice” and “compassion.” To the extent that she reached people in her audience, it was because she was the right messenger. She is a member of the LGBT community talking to an audience from that same shared community. Who else would they listen to? A member of an organization that poured money into Proposition 8 to end the right for Gays and Lesbians to marry in California? A straight member of the disability community?

Nope. To the extent that Restle’s message reached people it was because she was the right messenger carrying this particular message to this particular audience.

And btw, I urge people to read the entire article. The panel participants had some interesting insights to share about cultural variations in how bisexuality is viewed. Restle had more comments about the hierarchy of discrimination in addition to what I’ve shared here.
–Stephen Drake

Catching up #2: Ari Ne’eman in HuffPo: Health Care Reform and the Disability Community

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Ari Ne’eman has a long essay on the Huffington Post on health care reform and the concerns of the disability community. Ari is the founding President of the Autistic Self-Advocacy Network (ASAN). He is also – full disclosure alert – a friend and colleague of mine – although we have yet to meet face-to-face.

The following are excerpts from his essay, “Health Care Reform and the Disability Community“:

As we speak, Congress is deliberating on vast and important changes to the system of health care in the United States. This issue is one of crucial importance to all Americans, but of particular interest to those Americans who interact with public health insurance more than almost any other group — people with disabilities. Ranging from veterans with disabilities who receive care through the Veteran’s Administration health care system to the many low-income disabled adults who are eligible for Medicaid, the disability community interacts with the public health care infrastructure in the United States in a wide variety of ways. As we consider how to reform, streamline and expand that infrastructure through any of a variety of means, it is incumbent upon us to remember the key issues for making sure that health care reform doesn’t leave disabled adults and youth behind.

He goes on to list four key issues in health care reform that relate to the disability community. Here is part of item 4:

Stop discrimination in the provision of care: Too often, people with disabilities are denied necessary — sometimes even life-saving — medical care because of assumptions that non-disabled people make about our quality of life. For many people, disability is still considered a fate worse than death instead of a part of the human experience. As a result, it has been disabled people who are pushed over the side first when resources become scarce. As recently as last year, a task force including doctors from the Centers for Disease Control and Prevention, the Department of Homeland Security and the Department of Health and Human Services issued guidelines stating that, in the event of a flu pandemic or similar emergency, people with intellectual disabilities as well as those with chronic health conditions may be excluded from care.

The eugenic impulse that views people with disabilities as “burdens on society” or “life unworthy of life” is still regrettably alive and well within our health care system. Just last week, Disability Rights Wisconsin, the state’s protection and advocacy system for people with disabilities, filed suit against the University of Wisconsin hospital as a result of their decision to withhold medication and basic nourishment from two patients with intellectual disabilities who had pneumonia. These individuals were not in a persistent vegetative state, were not dying and one even asked for food. The decision to refuse anti-biotics, nutrition and fluids for a treatable medical condition was made by hospital officials based on their determination of “quality of life” for the individuals in question. Health care reform must include non-discrimination protections that prevent these types of atrocities by health care providers.

You can read the rest of his analysis here. –Stephen Drake

Catching up #1: Chris Hilderbrant on Max Baucus and “Palatable” Health Care Reform

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After a few days away, I’m playing catch-up again. So I have a few blog entries to refer people to. There is some excellent writing happening in our community.

First up is a post by Chris Hilderbrant. In the interest of full disclosure, Chris is the Director of Advocacy at the Center for Disability Rights (CDR). CDR provides material support to NDY – by providing me with an office, phone, access to internet and other important things that are essential to NDY’s work.

The latest blog entry by Chris on the CDR blog is directly relevant to NDY and should cause concern about what things are – and aren’t – being targeted as priorities in the discussions on healthcare reform. Here are excerpts from “Chairman Baucus, what’s on your political palate?“:

For three hours Senate Finance Committee Chairman Max Baucus led discussions on how to reform health care and how to pay for that reform. Single-payer health insurance advocates stood and walked out in silent protest. Others shouted to interrupt the opening remarks of Chairman Baucus (some later re-entered the room in different clothes!). Chairman Baucus pleaded with the remaining audience members to allow the hearing on healthcare reform to proceed. He indicated that he’d meet with people personally rather than have further interruptions of the hearing. As an ADAPT members with a certain prowess for interrupting bureaucratic proceedings, I had been considering a one person protest for the Community Choice Act… but, now I’ll be contacting his office to set up the meeting he promised me.

For three hours, a variety of Senators and healthcare experts discussed options. And for three hours, not one person said anything about long term services and supports (long term care, by another name).

Sadly, the closest that the hearing came to a mention of long term services and supports (LTSS) was when they engaged in a discussion of “the high cost of dying.”

Yup, the Senate, in all its gentle wisdom, is showing more interest in how much it costs for seniors and others to stay alive at the very end than they have shown in how seniors and people with disabilities live for the DECADES before we get around to dying.

There’s more. All of it worth reading. –Stephen Drake

Disability Rights Wisconsin Sues Over Allegedly Illegal Withholding of Treatment at UW Hospital

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Disability Rights Wisconsin(DRW) is suing the UW Hospital for allegedly violating the law in pushing for withholding of life-sustaining treatment in the cases of two individuals with developmental disabilities.

The story about the case was published in the May 14th issue of the Wisconsin State Journal. Thanks to Tim Wheat (the first to send me the link) and others who alerted me to this. A more permanent copy of the story can be found at DRW’s website.

Excerpt:

In a case that could have broad legal implications for when some patients are allowed to die, an advocacy group is alleging that doctors at UW Hospital broke the law by withholding treatment from two developmentally disabled patients with apparent cases of pneumonia.

The guardian of one patient, who survived, at first went along with and then later disagreed with the decision to withhold care, the lawsuit by Disability Rights Wisconsin alleges. The parents of the other patient, who died, pushed for the withdrawal of treatment, according to the group’s complaint filed Thursday in Dane County Circuit Court.

One medical ethicist said the case could help to clarify a difficult question in state law: How much power do families and guardians have to make medical decisions for vulnerable patients such as children and the developmentally disabled?

Disability Rights contends state law prevents parents and guardians from withholding treatment from patients who can’t make that decision for themselves unless they are in a “persistent vegetative state,” a condition the group says did not apply to the two patients in the lawsuit.

But a spokeswoman for UW Hospital said the hospital acted in the best interests of both patients and tried to follow the wishes of their families.

“What is at stake in this case is no less than patients’, parents’ and families’ ability to make private health care decisions in the best interests of the patient,” spokeswoman Lisa Brunette said in a statement.

Disability Rights is suing to change hospital practices and to recover the $4,700 it spent investigating the cases, plus legal costs. Attorney Mitch Hagopian said he worried some UW Hospital doctors may be too quick to suggest withdrawing treatment from a developmentally disabled person they perceive to have a low quality of life.

“It’s a great medical institution. They provide great care to their patients,” Hagopian said. “All we want is for them to provide that same great care to developmentally disabled people who are not dying.”(emphasis added)

One has to wonder just how much of this is happening in hospitals across the country, under the radar. Just this last February, the Disability Rights Network of Pennsylvania announced a Superior Court decision clarifying protections for people with developmental disabilities and their right to life-sustaining treatment.

Considering these two cases, it is as good a time as any to invite people to acquaint – or reacquaint – themselves with the “STATEMENT OF COMMON PRINCIPLES ON LIFE-SUSTAINING CARE AND TREATMENT OF PEOPLE WITH DISABILITIES.”

Excerpt:

  • People with disabilities are entitled to exercise their rights to life-sustaining care and treatment and to self-determination and autonomy.
  • Absent clear and convincing evidence of the desires of people with disabilities to decline life-sustaining care or treatment, such care and treatment should not be withheld or withdrawn unless death is genuinely imminent and the care or treatment is objectively futile and would only prolong the dying process.
  • For the limited number of people who have lifelong cognitive disabilities and who have never had the ability to exercise self-determination regarding life-sustaining care and treatment, such care and treatment should not be withheld or withdrawn unless death is genuinely imminent and the care or treatment is objectively futile and would only prolong the dying process.
  • When doubt exists as to whether to provide life-sustaining care and treatment a presumption must always be made in favor of providing such care and treatment.

Please check out the entire statement – endorsements can still be made – both individual and organizational. And from the looks of things, the statement is more relevant than ever. –Stephen Drake


Breaking News: Four Final Exit Network Members Busted on “Conspiracy to Commit Murder” Charges in Arizona

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The Phoenix New Times, which was the only newspaper to cover the initial investigation into the death of Jana Van Voorhis, reports that four members of the Final Exit Network have been arrested. Van Voorhis had minor physical complaints, but had a long history of struggles with psychological and emotional issues.

From the article:

Maricopa County Attorney Andrew Thomas announced a few minutes ago that investigators from his office have busted four people on murder charges in the 2005 “assisted suicide” death of a seriously mentally ill Phoenix woman.

New Times broke the news of this unusual and tragic case in 2007 in an extensive piece we called “Death Wish.”

The four defendants — who include retired Scottsdale resident Frank Langsner, a retired college professor — have been charged with conspiracy to commit murder.

Langsner and Wye Hale-Rowe, another so-called “exit guide” from the Final Exit Network (a national assisted suicide outfit based in Georgia), also are facing manslaughter charges.

Phoenix police records (and reporting by New TImes) showed Langsner and Hale-Rowe, both in their 80s, were present when 58-year-old Jana Van Voorhis (seen in the photo in her younger days) killed herself by inhaling helium through a hose, with an oxygen-eliminating hood snugly over her head.

Langsner and Hale-Rowe (a retired family therapist and great-grandmother from Aurora, Colorado) then staged the scene at Van Voorhis’ Phoenix condo to make it look as if the woman had just gone to sleep in her bed and died of unknown causes.

In its literature, Final Exit calls itself “the only organization in the United States willing to help individuals who are not `terminally ill’–six months or less to live–hasten their deaths. No other organization in the U.S. has the courage to make this commitment.”

All of the evidence suggests that Jana Van Voorhis, however, was not suffering from a terminal illness when she died, but had suffered from chronic mental illness.

The New Times promises “more on this one soon.”

I look forward to it. So far, the coverage coming out of Arizona has been much more professional than the coverage coming out of Atlanta and Chicago. –Stephen Drake