A New Year – New Fights and a New Blog and Website

assisted suicide, Our News & Commentary Blog, Washington state

Obviously, this blog has been conspicuously quiet for far too long.

We’ve been dealing with some issues that have kept me away from the computer a lot of the time – and then I’ve had some trouble regaining my own energy and stamina after some illness.

The New Year – 2008 – promises to present multiple challenges regarding euthanasia, futility and assisted suicide.

Right now, the biggest battle is in Washington State. Assisted suicide activists, led by former governor Booth Gardner, have started the “It’s My Choice” campaign to legalize assisted suicide for people deemed terminally ill in Washington State.

As has happened in other states – California was the most recent – a broad-based coalition (Coalition Against Assisted Suicide) has formed to oppose the effort to legalize assisted suicide:

In Washington, the Coaliton Against Assisted Suicide has formed to combat the
assisted suicide initiative that is being promoted for the 2008 ballot.

The Coalition includes people with disabilities, doctors, nurses, hospice workers, minority persons, and religious groups.

The Washington State chapter of Not Dead Yet is playing a prominent role in the coalition. They’ve already established a blog which we expect to be linking to and quoting often.

Washington NDY has been at the forefront of opposition to the proposed legislation, as evidenced by this article in today’s issue of The Olympian:

Two activists in wheelchairs, Duane French of Lacey and Joelle Brouner of Olympia, spoke against the law in a news conference that followed the one featuring Gardner.

French and Brouner said the law could create a coercion for some disabled people who are faced with difficulty getting palliative, or non-curative, care. French said some could be pressured by family or by economic forces into taking their lives.

More tomorrow….

–Stephen Drake

“Public Education” about PWDs hits new low with “Ransom Notes” campaign

action alert, activism, advocacy, Our News & Commentary Blog

As I was busy digging my way through my accumulated email and phone messages this week, I got a call from Ari Ne’eman, president of the Autistic Self Advocacy Network (ASAN).

Ari was looking for sign-ons to a letter protesting a new “public education” effort launched by the N.Y.U. Child Study Center. The campaign is titled “Ransom Notes.” In billboards, magazine ads, and kiosks, The “Ransom Notes” campaign features pictures of hand-written notes, looking like a ransom note from some b-movie.

Here’s an example of the text of one of the “ransom notes”:

We have your son. We will make sure he will no longer be able to care for himself or interact socially as long as he lives. This is only the beginning…Autism.


There’s nothing especially new about this approach to dealing scaremongering and objectifying people with disabilities. The metaphor of the “stolen child” has a long and ugly history in autism literature.

BTW, the Child Study Center claims it wants to reduce stigma for children with various disabilities. They haven’t really explained how that goal meshes with this current ad campaign.

To make a long story short, we signed onto the letter (text below).

If you want to know more about the ad campaign, you can check it all out for yourself at this site. There are images and descriptions of each “ransom note.”

As I said, the letter from ASAN is below. If you agree with it, you can sign on as an individual – or organization- through this link to a petition.

Enough. Here’s the letter:

To: NYU Medical Center
Dr. Harold S. Koplewicz, M.D.
The NYU Child Study Center
577 First Avenue
New York, NY 10016

Dr. Robert Grossman, M.D.
NYU School of Medicine
IRM 229
560 First Avenue
New York NY 10016

John Osborn President and CEO of BBDO New York
BBDO New York
1285 Avenue of the Americas
New York, NY 10019

Richard Schaps, Chairman and Chief Executive Officer
Van Wagner Communications, LLC.
800 Third Ave 28th Floor
New York, NY 10022

To the NYU Child Study Center and the supporters of the “Ransom Notes” advertising campaign:

We, the undersigned organizations, are writing to you regarding your new ad campaign for the NYU Child Study Center: “Ransom Notes”. Our organizations represent people with a wide range of disabilities, including those portrayed in your campaign, as well as family members, professionals and others whose lives are affected by disabilities. As people who live and work with disability, we cannot help but be concerned by the way your campaign depicts individuals with disabilities. By choosing to portray people on the autism spectrum as well as those living with OCD, ADHD and other disabilities as kidnapped or possessed children, you have inadvertently reinforced many of the worst stereotypes that have prevented children and adults with disabilities from gaining inclusion, equality and full access to the services and supports they require.

While the “Ransom Notes” campaign was no doubt a well-intentioned effort to increase awareness and thus support for the disabilities it describes, the means through which it attempts this have the opposite effect. When a child with ADHD is described as “a detriment to himself and those around him,” it hurts the efforts of individuals, parents and families to ensure inclusion and equal access throughout society for people with disabilities. When individuals with diagnoses of autism and Asperger’s Syndrome are told that their capacities for social interaction and independent living are completely destroyed, it hurts their efforts for respect, inclusion, and necessary supports by spreading misleading and inaccurate information about these neurologies. While it is true that there are many difficulties associated with the disabilities you describe, individuals with those diagnostic categories do succeed – not necessarily by becoming indistinguishable from their non-disabled peers – but by finding ways to maximize their unique abilities and potential on their own terms.

The “Ransom Notes” campaign places a stigma on both parents and children, thus discouraging them from pursuing a diagnosis that might be helpful in gaining access to the appropriate services, supports, and educational tools. The autism spectrum should be recognized for what it is: a lifelong neurological condition – not a kidnapper that steals children in the dead of the night. The devaluation of the lives of people with disabilities has led to public policies and funding decisions that have forced thousands of people with disabilities into nursing homes and other institutions. The unintended consequences of ad campaigns like yours give legitimacy to the taking away of the civil and human rights of people with disabilities.

It is true that diagnoses of ADHD, autism, Asperger’s Syndrome, and OCD often accompany great hardships for families. It is true that depression and bulimia are terrible disorders that require treatment. Yet, the way you choose to convey those messages is inappropriate and counterproductive. Individuals with disabilities are not replacements for normal children that are stolen away by the disability in question. They are whole people, deserving of the same rights, respect, and dignity afforded their peers. Too often, the idea that children with disabilities are less than human lies at the heart of horrific crimes committed against them. The recent tragic instances of violence against children and adults on the autism spectrum and with other developmental disabilities are linked to the perception that these people are less than human. We – the adults, families, professionals and others affected by these conditions – assert that nothing could be further from the truth.

We are also concerned that the negative stereotypes the “Ransom Notes” campaign depicts could make it harder for the many people with disabilities and their family members who are working to ensure that students with disabilities have the right to be included in their home schools while still receiving all necessary services. Federal law mandates that students with disabilities have the right to a “free and appropriate public education” in the “least restrictive environment”. Your advertising campaign claims that children with disabilities could be a detriment to those around them and as a result hurts the efforts of parents working to secure the opportunity for their children to be included with their peers.

While we recognize and applaud the good intentions intended by this effort, we must urge you to withdraw this campaign immediately, as it threatens to harm the very people whom it seeks to benefit: people with disabilities, their families, and their supporters. In the press release announcing this campaign, the Center gave as one of its goals “eliminating the stigma of being or having a child with a psychiatric disorder”. We are in full agreement with the goal of eliminating stigma against people with disabilities and their families. Yet, this campaign serves to increase that stigma rather than lessen it. We hope that you will heed our concerns and those of many other people with disabilities, family members, professionals, and countless others and end the “Ransom Notes” advertising campaign.

Please do not to hesitate to contact any of the organizations listed as signatories to this letter in order to better solicit the opinions of the disability community prior to your next advertising campaign. We would be more than glad to help the Center to develop better strategies to achieve its excellent goals. The NYU Child Study Center has the potential to do enormous good for children and families affected by disability. By showing that the Center respects the views of people with disabilities, families, and professionals, you can make that aspiration a reality.

Sincerely,

Ari Ne’eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org

Bob Kafka
National Organizer ADAPT
http://www.adapt.org/

Diane Autin
Executive Co-Director
Statewide Parent Advocacy Network of New Jersey
http://www.spannj.org/

Jim Ward ADA and the National Coalition for Disability Rights
http://www.adawatch.org/

Janette R. Vance
The Family Alliance to Stop Abuse and Neglect
http://www.thefamilyalliance.net/

Estee Klar-Wolfond
The Autism Acceptance Project
http://www.taaproject.com/

Barbara Trader, MS
Executive Director
TASH
http://www.tash.org

Jim Sinclair
Autism Network International
http://ani.autistics.org/

Stephen Drake
Not Dead Yet
http://notdeadyet.org/

Stanley Soden
Director of Independent Living Services.
MOCEANS Center for Independent Living
http://www.moceanscil.org/

Ethan B. Ellis
Executive Director
Alliance for Disabled in Action, Inc.
http://www.adacil.org/
President Next Step, Inc.

Phil Schwarz
Vice President Asperger Association of New England
http://www.aane.org/
Member, Board of Directors
Autism National Committee
http://www.autcom.org/

Life keeps interrupting my plans

Our News & Commentary Blog

About a month ago, I posted a brief announcement that I was dealing with some family crises and we were hopefully in a period where the crisis was over and cautious optimism could prevail.

Turns out that “caution” was all too appropriate an adjective. For the past month, Diane and I have been travelling between Chicago and Michigan. Computer access has been limited. Time and energy even more limited.

Things seem to be pretty stable right now. Hopefully, I can start catching up with work and get my work rhythm going again.

Starting today.

–Stephen Drake

Kevorkian “dying” – again

Kevorkian, media coverage, Our News & Commentary Blog, reality check

I’ll admit I’ve been kind of surprised that Kevorkian hasn’t been out on the road doing speaking gigs. In fact, until the last week, the only one scheduled was at the University of Florida, which has been postponed due to the infamous “don’t taser me, bro” incident at an appearance by Senator John Kerry.

It could be that Kevorkian just isn’t someone who is a draw if he isn’t going out and amassing a body count. It could also be that at least some organizations have reviewed some of his speeches and writings and found that he’s pretty incoherent a lot of the time.

But just this week, the Criminal Justice Club of Wayne State University announced that Kevorkian would give a lecture on prison reform. The lead on the story at “Click on Detroit” gave me that old feeling of “deja vu all over again.”:

DETROIT — Jack Kevorkian, the former pathologist whose name is almost synonymous with physician-assisted suicide in the United States, is scheduled to make what could be one of his last public appearances in Detroit on Nov. 29.

Say what? Is he moving out of the country? I thought the terms of his parole prevented that.

Nope. According to the news story, it’s because Kevorkian doesn’t have long to live:

The WSU Criminal Justice Club, which is sponsoring the talk, said in a news release this might be a “rare educational opportunity that may never present itself again,” since Kevorkian is terminally ill with Hepatitis C.

Funny. When Kevorkian talked with Mike Wallace after his release, he referred to his Hepatitis C and other ailments as pretty much under control, describing his health as “fair.”

I emailed the contact listed on the website for the Criminal Justice Club, asking for a copy of their press release. I got a response and a copy of the release pretty quickly. It looks like the Club may have been duped:

Jack Kevorkian will be appearing as a guest speaker of the Criminal Justice Club on November 29, 2007 at 12:00 in Helen DeRoy Audiorium 049 (bottom level auditorium). This event is co-sponsored by the Criminal Justice Club, Student Council, and Department of Criminal Justice. As you may have heard, Dr. Kevorkian’s lawyer has stated that Kevorkian is terminally ill with Hepatitis C,
so this is a rare educational opportunity that may never present itself again.

Yep. I did hear that. I heard it in 2003. I heard it again in 2004. etc. etc.

Like the boy who cried “wolf,” Mayer Morganroth claimed – year after year – that Kevorkian had “less than a year to live” in his efforts to win an early release for his client. This was laid out and confirmed in an Associated Press story that appeared on December 14th of last year (link is no longer operational):

Some object to Kevorkian’s upcoming release from prison
12/14/2006, 5:34 p.m. ET
By KATHY BARKS HOFFMAN
The Associated Press

(excerpt)
Not Dead Yet, a national disability rights group based in Forest Park, Ill., also said it was disappointed that Kevorkian would be released in June.

“We won’t forget the struggling disabled people he preyed upon. And we won’t be silent,” the group said in a statement.

It added that it expected that the 78-year-old Kevorkian, after leaving prison, will show a “near-miraculous `recovery'” from his health problems, which include diabetes, hepatitis C, high blood pressure, hardening of the arteries in his brain and vertigo, according to his attorney.

“We were suspicious his health problems were greatly exaggerated when his lawyer filed appeals for four years in a row claiming Kevorkian was essentially on the brink of death,” the group said.

***

Granholm spokeswoman Liz Boyd said all requests to have sentences commuted for health reasons must first go to the Corrections Department and then to the parole board, which recommends to the governor whether the request should be honored.

Boyd said Morganroth already has made four such requests, in 2003, 2004, 2005 and earlier this year.”In each instance he indicated that Dr. Jack Kevorkian had less than a year to live,” she said.

“Miraculously,” as we predicted, Kevorkian seemed to be far from a frail and dying figure once he emerged from prison. He looked forward to talking to the media, writing books and doing lectures.

No one in the media questioned how someone who had been described as “dying” – for several years in a row – suddenly seemed to have transformed himself into an elderly man with serious but manageable health problems.

And the press probably won’t blink now that Morganroth and the Criminal Justice Club are back to describing Kevorkian as “terminally ill” now.

Morganroth has an advantage that the boy who cried “wolf” didn’t have. The villagers that dealt with the boy in the story had something resembling a long-term memory. There is little evidence of that in either the press or the public consciousness. –Stephen Drake

Swiss Group Dignitas Taking a Cue from Kevorkian Playbook?

assisted suicide, Kevorkian, Our News & Commentary Blog, Switzerland

There’s a new twist in the ongoing saga involving Dignitas, the Swiss group that caters to old, ill and disabled tourists wanting to kill themselves.

As we reported earlier, Dignitas has run into problems with the NIMBY (“not in my back yard) phenomenon. The group was kicked out of two apartments as a result of complaints by neighbors who apparently objected to the physical reality of corpses and body bags in their making regular appearances in their living space.

Well, the group’s troubles continue to mount. According to press reports (more below, with link), the Association of Zurich Hoteliers has officially barred the group from using hotels rooms for its “services.”

So they’ve worked out a new solution, which will be familiar to those of us who followed Jack Kevorkian’s killing career – “mobile suicide services.”

There are several stories running around about this latest development, but this one from the UK Telegraph is one of the most detailed:

A controversial Swiss suicide charity is now helping people to die in car parks after being forced out of its premises by local residents.

Two German men aged 50 and 65 have already used the “death on wheels” service of the Dignitas charity, which handed them a lethal cocktail of drugs in a car park near Zurich last week.

The deaths were only reported yesterday, with a local prosecutor confirming that both men drove to the woodland parking area in the Maur suburb and took an overdose of barbiturates in their cars.

This isn’t exactly a new idea. This was Jack Kevorkian’s way of doing business for quite some time. It’s interesting that a lot of people found the “esthetics” of what he was doing much more objectionable than his actual facilitation of people’s suicides (news articles such as the one linked above often made mention of the extreme age and poor condition of his van).

Looks like Dignitas is getting some of that same reaction:

Josef Hecken, the justice minister in the German region of Saarland, said Dignitas’s methods were “outrageous”, while the Swiss Social Democrat MP, Dieter Wiefelspütz, said: “We need to do everything we can to stop this group from operating. It is degrading.” (according to the article, over half of Dignitas clients come from Germany)

It’s clear that Dignitas has become a huge source of embarrassment to the Swiss. What is less clear is what – if anything – they are willing to do about it. –Stephen Drake