The Passing of Marca Bristo Is A Disturbance In the Force

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A Memorial Service for Marca Bristo is being held today, October 17, 2019 at 4:00 p.m. Eastern Time at the Kellogg Conference Center at Gallaudet University, 800 Florida Avenue NE in Washington, D.C. The Memorial will reportedly be live-streamed via the website of Access Living, her center, one of the oldest and largest centers for independent living in the country.

Throughout Not Dead Yet’s more than two decades of work, Marca demonstrated knowledge and support on the issues at the heart of our mission.

In April 1996, I was invited to present testimony on assisted suicide to the Constitution Subcommittee of the U.S. House of Representatives, testimony I co-authored with Carol Gill. Marca invited me to a disability policy summit held in Dallas the weekend before the scheduled testimony, where I was able to personally ask national disability rights leaders to sign on to the testimony, gaining support from Justin Dart, Judy Heumann and many more. There in Dallas, Not Dead Yet began.

The following year, Marca, who chaired the presidentially appointed National Council on Disability (NCD) during the Clinton Administration, arranged a debate before the Council members between myself and Derek Humphry, co-founder of the Hemlock Society, resulting in a formal NCD position opposing legalization of assisted suicide. NCD reaffirmed this position in 2005, and again this month when it released it’s new report, The Danger of Assisted Suicide Laws.

In April 1999, Marca spoke at a protest held at Princeton University opposing the hiring of bioethicist Peter Singer. “Singer’s core vision, that the life of a person with a disability is worth less than the life of a person without a disability, and therefore it is OK to kill infants with disabilities if that is what the parent wants to do, amounts to a defense of genocide.”

Over the years, the disability rights advocates at Access Living participated in NDY direct actions as well, and were a major part of our 2014 protest in Chicago against the World Federation of Right To Die Societies. Marca’s advocacy staff generously handled advance logistics for the action, and Marca spoke movingly at our rally.

Insightful, strategic, influential, mission driven, irreplaceable. Her dedication touched and bettered the lives of countless people with disabilities across decades, across many struggles. With Marca, the phrase “Rest In Power” takes on new meaning.

Federal study finds assisted suicide laws rife with dangers to people with disabilities

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The National Council on Disability (NCD) has issued the second in a series of reports on Bioethics and Disability. NCD’s release on the report today focuses on “a federal examination of the country’s assisted suicide laws and their effect on people with disabilities, finding the laws’ safeguards are ineffective and oversight of abuses and mistakes is absent.”

The Disability Rights Education & Defense Fund (DREDF), which worked in partnership with NCD on the series of reports, summarizes this groundbreaking work:

Despite the growing consensus that disability is a normal part of the human experience, the lives of people with disabilities are routinely devalued in medical decision-making. Negative biases and inaccurate assumptions about disabled people persist. In medical situations, these biases can have serious and even deadly consequences.

Beginning on September 25, the National Council on Disability (NCD) is releasing a series of reports on bioethics and disability. The five reports were developed through a cooperative agreement with the Disability Rights Education & Defense Fund (DREDF), which appreciates and acknowledges the valued work of our partners, the Autistic Self Advocacy Network, the Bazelon Center for Mental Health Law and Not Dead Yet, in creating the series.

Each report examines the status and future of how a variety of key issue areas – including organ donation, assisted suicide laws, genetic testing, systems such as Quality Adjusted Life Years, and assumptions about medical futility – are developing due to technological and scientific advances as well as legal changes and healthcare delivery. A combination of original research, stakeholder and scholar interviews, literature reviews, reviews of media reports, and legal analysis is used to examine each topic. Each report includes findings and makes recommendations to lawmakers and policymakers that we hope will ensure that the lives of people with disabilities are valued on an equal and nondiscriminatory basis with all others.

Not Dead Yet specifically consulted on the topics of organ donation, assisted suicide and medical futility.

NCD’s release on today’s assisted suicide report includes the following details, and an example of a seriously mistaken cancer prognosis personally experienced by the NCD Chairman, Neil Romano:

Despite the belief that pain relief is the primary motivation for seeking assisted suicide, in Assisted Suicide Laws and their Danger to People with Disabilities, NCD found that the most prevalent reasons offered by someone requesting assisted suicide are directly related to unmet service and support needs, which NCD urges policy makers respond to through legislative changes and funding.

“Assisted suicide laws are premised on the notion of additional choice for people at the end of their lives, however in practice, they often remove choices when the low-cost option is ending one’s life versus providing treatments to lengthen it or services and supports to improve it,” said NCD Chairman Neil Romano.

Closely examining the experience in Oregon, where the practice has been legal for 20 years, NCD found that the list of conditions eligible for assisted suicide has expanded considerably over time, including many disabilities that, when properly treated, do not result in death, including arthritis, diabetes, and kidney failure.

Assisted Suicide Laws and their Danger to People with Disabilities also notes suicide contagion in states where assisted suicide is legal; as well as a loosening of existing safeguards both in states with legalized assisted suicide and states considering bills to legalize.

In the report, NCD details limitations of purported safeguards of assisted suicide laws, finding:

  • Insurers have denied expensive, life-sustaining medical treatment, but offered to subsidize lethal drugs, potentially leading patients to hasten their own deaths;
  • Misdiagnoses of terminal disease can cause frightened patients to hasten their deaths;
  • Though fear and depression often drive requests for assisted suicide, referral for psychological evaluation is extremely rare prior to doctors writing lethal prescriptions;
  • Financial and emotional pressures can distort patient choice;
  • Patients may “doctor shop” limitlessly to find a physician who will obtain a colleague’s concurrence and prescribe a lethal dose

“As someone who has battled cancer and been given weeks to live and am still thriving years later, I know firsthand that well-intending doctors are often wrong,” said Mr. Romano. “If assisted suicide is legal, lives will be lost due to mistakes, abuse, lack of information, or a lack of better options; no current or proposed safeguards can change that.”

NCD concludes its research with recommendations, including highlighting the need for:

  • Federal research on disability-related risk factors in suicide prevention, as well as on people with disabilities who request assisted suicide and euthanasia;
  • Federal regulation requiring non-discrimination in suicide prevention services; and
  • Greater federal investment in long-term services and supports.

The NCD report is online at The Danger of Assisted Suicide Laws. The release dates for the other reports in the series are here, with links to the full reports as they become available.

Minneapolis Star Tribune Publishes John Kelly’s Excellent Letter

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ASSISTED SUICIDE
What can seem like dignity can turn out to be anything but

I sympathize with Bobbi Jacobsen (“I have ALS, and I hope for a dignified death,” Opinion Exchange, Sept. 24). Like her, I became severely disabled as an adult. But I oppose assisted suicide: It’s too dangerous.

John Kelly, white man with short hair, plaid shirt, wire rim glasses, sip-and-puff switch to operate wheelchair.

Assisted suicide can look appealing from an individual’s perspective, but at the state level, it inevitably leads to the premature deaths of non-dying people. At least 12% to 15% of people judged terminal outlive their six-month prognosis, according to the Journal of Palliative Medicine, sometimes by years and decades. Actress Valerie Harper, who died last month, lived six years longer than predicted. Tragically, there are people who would be alive today but for their misplaced trust in a doctor’s prediction.

Jacobsen cites the absence of disability abuse reports from state protection and advocacy agencies, but abuse gets easily buried. For example, Oregonian Wendy Melcher’s death in 2007 at the hands of two nurses was suppressed by the state nursing board.

Elder abuse is rampant. Safeguards end after drugs get dispensed and, because no witness is required, heirs and abusers can engineer deaths without worry.

As the cheapest “treatment” for serious illness, assisted suicide fattens insurers’ profits and crowds out traditional, more expensive treatment.

Palliative care doctors know how to let people die gently, so it’s inexcusable that anyone die in uncontrolled pain. Everyone has the right to reject any treatment, including food and water, and palliative sedation is available as a last resort.

The Minnesota Legislature should demand excellent palliative care, not put everyone in danger of premature death due to mistakes, abuse and insurers’ bottom lines.

JOHN B. KELLY, BOSTON

The writer works for Not Dead Yet, an organization opposed to assisted suicide.

Announcing Webinar!: Disability Rights Opposition To Assisted Suicide Laws

Our News & Commentary Blog

Announcing!

Webinar: Disability Rights Opposition
To Assisted Suicide Laws

Wednesday, October 30, 2019, 3:00-4:30 pm Eastern

REGISTER HERE!

What Will You Gain By Attending:

  • Familiarity with the key issues, arguments and common questions
  • Materials that explain, detail, and document individual cases of assisted suicide problems and abuses
  • Understanding what disability has to do with assisted suicide

Speakers:

  • Anita Cameron, Director of Minority Outreach, Not Dead Yet
  • Diane Coleman, President/CEO, Not Dead Yet
  • Marilyn Golden, Senior Policy Analyst, Disability Rights Education & Defense Fund
  • John Kelly, Director, Second Thoughts Massachusetts

Topics Include:

  • What is Assisted Suicide?
  • What’s disability got to do with it?
  • Deadly mix between assisted suicide & pressures to cut healthcare costs
  • Elder and disability abuse; effects on other constituencies
  • Palliative care and palliative sedation can address pain
  • Failure of so-called “safeguards”
  • Minimal data and fatally flawed oversight, no investigation of abuse
  • Suicide contagion
  • What’s happening in Canada and other countries?
  • Take action!

REGISTER HERE

For More Information: mgolden@dredf.org

NDY Urges USCIS To Reverse Policies That Kill Ill and Disabled Immigrant Children

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Not Dead Yet, the Resistance

NDY Urges USCIS To Reverse Policies That Kill Ill and Disabled Immigrant Children

Last month, U.S. officials took another step against immigrant people by ending adjudication of “deferred action” requests. These requests temporarily prevent the deportation of vulnerable individuals and families who face compelling, and often life-threatening, circumstances. Many applicants for deferred action are children with severe medical conditions like cancer, cystic fibrosis, and epilepsy. These policies also especially target Black and Brown immigrant children.

U.S. Citizenship and Immigration Services (USCIS) is an agency of the U.S. Department of Homeland Security that administers the country’s naturalization and immigration system. As of August 7, 2019, USCIS is no longer accepting or addressing non-military deferred action requests received at field offices after that date.

As the American Immigration Lawyers Association has explained:

  • This change could result in many children’s deportation to countries in which they would lack access to essential medical treatment—treatment that makes the difference between life and death.
  • Other vulnerable individuals precluded from deferred action due to this change could face long-term or permanent separation from loved ones, making this measure a de facto family separation policy.
  • Indeed, USCIS’s shift in policy could compel families made up of noncitizen parents and sick U.S. citizen children to choose either: (1) family separation; or (2) family unity in countries lacking vital medical care— effectively, a choice between family separation and death.

Under public pressure, USCIS announced that it would re-open denied deferred action requests that were already pending as of August 7, but that is simply not enough to protect many of the lives at risk going forward. The only solution is to fully restore USICS’s deferred action adjudications.

USCIS changed its policy without any advance public notice, endangering terminally ill kids whose lives hang in the balance and other vulnerable individuals who must face the prospect of being separated from loved ones. This is worse than unacceptable – it is nothing short of horrific!

Not Dead Yet is a national disability rights group with sister organizations in Canada, the United Kingdom and New Zealand. We oppose the legalization of assisted suicide and euthanasia as deadly forms of discrimination against old, ill and disabled people. These USCIS policies show similar contempt for the value of our lives, and must be reversed.

[This Statement was submitted to the House Subcommittee on Civil Rights and Civil Liberties which  will hold a hearing entitled “The Administration’s Apparent Revocation of Medical Deferred Action for Critically Ill Children” at 12PM on Wednesday, September 11, 2019.]