Autistic Self Advocacy Network (ASAN) Condemns Exclusion of Disabled People at NJ Hearing on Assisted Suicide Bill

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The Autistic Self Advocacy Network  (ASAN) has issued a statement condemning the exclusion of disabled people from testifying at yesterday’s (Dec.7) hearing on a proposed assisted suicide bill in front of the New Jersey Senate Health, Human Services and Senior Citizens Committee:

(Excerpt)

The Autistic Self Advocacy Network is deeply concerned about the omission of disabled people and representatives from disability rights organizations at yesterday’s hearing. Given that more than half of the groups in the New Jersey coalition opposing the bill are disability rights organizations and centers for independent living, it is unconscionable that the committee deliberately excluded witnesses from the disability community. Even after our community submitted a formal request for inclusion among the witnesses, the committee declined to invite a disability community representative.

Read the entire statement here.

New Jersey Senate Committee Shuts Out Disability Rights Community from Assisted Suicide Hearing

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On the website of the New Jersey coalition opposing the state’s assisted suicide bill, more than half of the New Jersey state groups listed are disability groups.  Specifically, they are centers for independent living run by people with disabilities, and the statewide independent living council mandated by federal law to plan the state’s independent living services for people with disabilities of all ages.

Nevertheless, in a move that has outraged both national and state disability rights advocates, the New Jersey Senate Health, Human Services and Senior Citizens Committee last week announced that there will be a hearing on the assisted suicide bill (S 382), with witnesses by invitation only and no disability witness invited.

The New Jersey Alliance Against Doctor-Prescribed Suicide is issuing a press release expressing outrage at this exclusion of the voice of disability rights advocates, as follows:

For Immediate Release Contact: Tim Rosales 929.244.3297

New Jersey Senate Committee Shuts Out Disability Rights Community from Assisted Suicide Hearing

Health Committee Chair Joseph F. Vitale Refuses Testimony Request from Disability Rights Organizations

(Trenton, NJ) – In a breathtaking turn of events, the committee scheduled to hear arguments today on assisted suicide bill S382 declined to invite the bill’s most vocal opponents, the disability rights community. When in June the Assembly bill was temporarily pulled for lack of votes, the Star-Ledger reported, “Disability advocates, fearing the legislation could be manipulated to prematurely end patients’ lives, turned out in force to testify against the bill.”

“We have been opposing assisted suicide for a generation,” said Diane Coleman of the national grassroots group “Not Dead Yet.” “Every major national disability rights organization that has taken a position on assisted suicide, opposes it.”

The Senate Health, Human Services and Seniors Committee posted an invitee list that included proponent group Compassion & Choices (the rebranded Hemlock Society), but left out opposing disability organizations. A formal request to the committee for inclusion was rejected.

“We have been excluded too long to allow this outrage to pass,” said John B. Kelly, New Jersey native and Executive Director of Second-Thoughts. “What is the Committee afraid of?”

Written testimony will be submitted to the Senate committee from a number of leading disability rights organizations, some of the statements will continue to be posted on our website and can be accessed by clicking here.

The New Jersey Alliance Against Doctor-Prescribed Suicide is a coalition of disability rights, healthcare, civil rights, faith-based and patient advocacy organizations opposed to doctor- prescribed suicide in New Jersey.

www.NoAssistedSuicideNJ.com

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The uninvited have, however, submitted written testimony, some of which John Kelly has posted on bluejersey.com.  One of these is very strongly worded testimony by the former executive director of the NJ Council on Developmental Disabilities, Ethan Ellis.  Here’s an excerpt:

I’m now  81 years old and I’ve come out of retirement to speak out against this well-meaning but murderous piece of legislation – at my age, I’ve earned the right to speak candidly and I will.

This bill is a matter of dollars and cents, not sense. Behind the scenes, it’s major supporters are those who will benefit financially from ending the lives of people rendered helpless by needless pain, rather than allowing us to live out our natural lives with dignity by paying for the palliative care that will relieve that pain. They’re easy to identify: health insurance companies, hospitals and, in some states, those officials who control or influence their budgets.

If you doubt it, look behind the experience they often cite as successful in Oregon. After the bill on which S 382 is based passed there with the sub rosa support of state officials, those same state officials removed the strongest, most effective painkillers from the list of drugs eligible for CMS reimbursement, encouraging those in unbearable pain to kill themselves because otherwise reliable relief was beyond their reach.

Mr. Ellis’ full testimony is online here.

Another New Jersey advocate to submit written testimony is Norman Smith, Board President of the Progressive Center for Independent Living, also representing two other organizations, Resources for Independent Living and Alliance Center for Independence.  Among other things, he wrote about disturbing personal encounters with emergency room doctors that are all too familiar to many of us (myself included):

A personal story that may explain my fear: I have had the unfortunate experience of dealing with doctors in emergency rooms. Often I can see the look in their eyes: their cold look of indifference as they deal with my medical situation and my Cerebral Palsy. My life has no value to them because they see my disability first. “Better off dead than like that” is in their eyes.

But then I can see their attitude change as they learn that I’m married, that I have a six-year old son, and that I have a job with responsibilities. They discover that I have a life that they put value on.

Mr. Smith’s full testimony is here.

Meanwhile, John Kelly has been coordinating with disability community advocates from national and out-of-state organizations who are adding their weight to the urgent message that the NJ Senate committee must hear from the group most negatively impacted by assisted suicide legislation, people with disabilities.  Their testimonies have been posted online:

The Committee is not expected to vote tomorrow, but whatever develops, we’ll try to keep you up to date.

All of our readers should be alert to the possibility of assisted suicide legislation in each of our home states.  Assisted suicide proponents are hoping to capitalize on the media storm that arose around the tragedy of Brittany Maynard’s death.  We will need to remind legislators that the people they need to be thinking about are the countless thousands of old, ill and disabled people whose lives are too often dismissed as worth-less.  We cannot let them forget who this is really about, and whose lives are at stake.

 

Colorado ADAPT, NDY Tell Assisted Suicide Advocates They Will Resist Legalization – NDY Board Member Anita Cameron Interviewed on Local News

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Last month, we shared a press release issued by Colorado activists from Not Dead Yet and ADAPT protesting an appearance by Compassion and Choices CEO Barbara Coombs Lee in Boulder, Colorado.

Since then, it’s become apparent that Colorado is indeed one of the states being targeted for legalization of assisted suicide. KUSA Channel 9 broadcast a story about proposed legislation that featured parts of an interview with NDY board member Anita Cameron.

Unfortunately, the video isn’t captioned, but there’s a print story underneath the video on this link.

Here’s an excerpt covering Anita’s part in the story:

But it’s not just religious groups who want to keep doctors from having the ability to end a life. Disability advocacy groups across the country worry about the implications of these laws. They fear those with disabilities will be coerced into using the law to end their lives early.

Anita Cameron is nearly blind, has multiple sclerosis and suffers from a condition called cerebellar ataxia. She sits on the board of a national disability organization called “Not Dead Yet.”

“This right to die is going to turn into the duty to die because people will be coerced,” Cameron said.

It’s a concern often voiced by groups like “Not Dead Yet.” They fear that people with disabilities and the elderly, with worsening conditions, may be pressured into seeking life-ending medication even if they do not really want to die.

“As your condition progresses, you require more care or more services, you are more apt to feel, I don’t want to be a burden to my family,” Cameron said.

These are excellent comments. Like many of us who have gone through interviews in which only a statement or two get broadcast or printed, Anita reported in a Facebook post that she felt other points she made were stronger ones.  That’s one of the tricky things about edited interviews – you have to make sure you stick to strong and valid points since anything that seems fuzzy or weak will be the one the reporter most often uses. Obviously, if Anita thought the above remarks weren’t her strongest points, she succeeded (and better than I have in many instances) in making only strong points and statements.

Disability perspective aired in Brittany Maynard media coverage

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This is a quick sharing from our “In the News” section of our website, with excerpts from articles that included the disability perspective in the last two days of coverage of the assisted suicide issue spurred by media attention to the Brittany Maynard story.  Marilyn Golden, John Kelly and I have also had op-eds published very recently, and links to those have been posted under “Op eds.”  I apologize for the lack of analysis of the coverage, but I’m sure that our regular readers are very aware of how one-sided the majority of coverage has been.

Brittany Maynard’s Storybook Ending (Townhall.com, 11/4/14)

Marilyn Golden of the Disability Rights Education and Defense Fund fears that Maynard’s storyline will create “suicide contagion” as other young people, even those who are not terminally ill, see her as a model. According to the National Institute of Mental Health, “more than 50 research studies worldwide have found that certain types of news coverage can increase the likelihood of suicide in vulnerable individuals. The magnitude of the increase is related to the amount, duration and prominence of coverage.”

Aid-in-dying local conversation (WHAM Cha. 13, 11/4/14)

“It’s not about people taking their own lives it’s setting up a system where medical providers and everyone involved are guaranteed immunity in assisting someone with suicide, the doctor acts as gate keeper,” said Stephen Drake of the “Not Dead Yet” advocacy group. “That’s kind of dangerous public policy in terms of making that significant difference because the suicide prevention statues are based on the idea lives are valuable.” The group “Not Dead Yet” is a disability rights group who believes aid-in-dying laws discriminate against old, ill and disabled. Drake explains doctors can be wrong and sometimes people who are once called terminal end up living much longer.

Brittany Maynard’s death could spur action on assisted suicide in California (Sacramento Bee, 11/3/14)

“The number of people who are at risk of significant harm (is) so much larger than the people who would be helped,” said Marilyn Golden, a policy analyst for the Disability Rights Education & Defense Fund. “If assisted suicide is legal, some people’s lives will be ended without their consent through mistakes and abuse.”

Offering death as an option would influence not just patients, Golden said, but also doctors and insurance companies who help guide end-of-life decisions.

“There is a deadly mix between our broken profit-driven health system and the option of assisted suicide, which will become the cheapest so-called treatment,” Golden said. “Will insurers do the right thing or the cheap thing?”

More attention to right-to-death debate after Maynard’s death (USA Today, 11/3/14)

At the time of death, the laws don’t require an independent witness to verify it’s the patient who is administering the drugs themselves or not being pressured to take the drugs, said Diane Coleman, president of Not Dead Yet, a disability rights organization that opposes legalizing assisted suicide.

“You don’t really know what’s going on behind closed doors,” Coleman said.

The Future of the Right-to-Die Movement (U.S. News & World Report, 11/3/14)

Marilyn Golden, senior policy analyst at the Disability Rights Education and Defense Fund, says Maynard’s case may present a compelling argument on an individual level, “but we must look more broadly at society, at all the people who stand to be harmed.”

She says the Oregon law does not do enough to protect vulnerable people from being pressured by abusive care workers, family members or even their insurance companies. Furthermore, she says, diagnoses of how long a patient has to live can be wrong, and there is not enough being done to screen for mental depression or other psychiatric issues.

“When people read the fine print, assisted suicide bills are defeated in legislatures,” she says, noting there are other legal forms of care, known as palliative care, that can relieve the suffering of the terminally ill.

Boulder, CO: Disability Rights Activists Protest Compassion and Choices President Visit

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For Immediate Release:  October 26, 2014

Contact:

Anita Cameron, 720-369-6983
Dawn Russell, 303-884-1471

Disability Rights Activists Protest Compassion and Choices President Visit

Boulder, CO – Disability rights activists from Not Dead Yet and ADAPT are protesting the visit to the West Boulder Senior Center of Compassion and Choices President, Barbara Coombs Lee. Coombs Lee is in town to give a presentation called, Death with Dignity: Colorado Next? as part of a national push to legalize assisted suicide.

“The legalization of assisted suicide puts me and others with disabilities at risk”, said Anita Cameron, one of the organizers of the protest, and a member of Not Dead Yet. “Due to our flawed health care system, it costs much less to kill me than to care for me. I’m at higher risk of abuse and coercion, so my ‘right’ to die evolves into my duty to die.”

The group says that there are no real safeguards in assisted suicide laws; all a doctor must do to achieve criminal and civil immunity is to state that he or she was acting in good faith that a patient was terminally ill and voluntarily sought assisted suicide. They also say that assisted suicide laws violate the Americans with Disabilities Act because people receive or don’t receive suicide prevention based solely on the status of their health, creating a double standard.

“We are not here to disrespect anybody”, said Dawn Russell, of ADAPT. “We just want to let Compassion and Choices know that we, along with a number of national disability groups oppose legalizing assisted suicide. It doesn’t give us choices. It devalues our lives. I don’t want to be pressured into killing myself, which is what this will come down to. I want to live!”

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