NDY Press Release: Disability rights advocates are having a busy week opposing legalization of assisted suicide

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[Editor’s note:  The PRWeb version of this press release including a photo of NDY Board Chair Anne Sommers is available in pdf format here.]

Not Dead Yet leaders as well as advocates from several national and local disability rights groups are having a busy week opposing assisted suicide laws being considered by legislatures in California and the District of Columbia as well as a Tennessee court this week.

The California Assembly Health Committee was scheduled to hear testimony on that state’s assisted suicide bill, the End of Life Options Act (SB 128), until proponents of the law withdrew it from a scheduled hearing earlier this week.

In a statement issued by the coalition Californians Against Assisted Suicide, Marilyn Golden of the Disability Rights Education and Defense Fund was quoted stating, “Those of us advocating on behalf of disability rights organizations understand that choice is a myth in the context of our health care reality. End-of-life treatment options are already limited for millions of people—constrained by poverty, disability discrimination, and other obstacles. Adding this so-called ‘choice’ into our dysfunctional healthcare system will push people into cheaper lethal options. There is no assurance everyone will be able to choose treatment over suicide; no material assistance for families of limited means who are struggling to care for loved ones; no meaningful protection from abusive family members or caregivers.”

Meanwhile, the District of Columbia is holding the first public hearing hearing on its assisted suicide bill, B21-38, on Friday, July 10. Not Dead Yet’s board chairperson, Anne Sommers, will be testifying, as well as board member Samantha Crane. Crane will testify on behalf of the Autistic Self Advocacy Network, where she works as director of public policy. Lindsay Baran, policy analyst with the National Council on Independent Living, and Shira Wakschlag, staff attorney and special assistant to the CEO of The Arc of the United States, will also be testifying.

Baran expressed concerns about the interaction of pressures to cut health care costs with assisted suicide legislation. “Over and over we see insurance providers override physician recommendations due to cost,” Baran said. “As someone with a physical disability who has undergone many treatments and surgeries throughout my life, this is something I’ve experienced personally. I’ve had coverage for expensive medications and treatments denied and important procedures delayed.”

Sommers addressed the problem of societal attitudes about dignity implicit in the bill’s title, Death With Dignity, and the reasons that Oregon doctors report as underlying requests for assisted suicide. “Legalizing assisted suicide sends the wrong message to anyone who depends on caregivers – the message that feeling like a burden is not only an acceptable reason for suicide,” said Sommers, “but a justification for our health care system to provide you the lethal means.”

Also on Friday, the Davidson County Chancery Court in Nashville, Tennessee will hold a hearing on the government defendants’ motion for judgment on the pleadings in a case brought by John Jay Hooker to legalize assisted suicide (Case No. 15-0615-II). Disability advocates from Tennessee Not Dead Yet as well as the Tennessee Disability Coalition plan to attend the proceeding. Tennessee Not Dead Yet leader Josue Rodriguez testified passionately at the June 9th Health and Welfare Committee hearing on Tennessee’s assisted suicide bill, describing the suicidal despair that disability discrimination drove him to at an earlier point

NDY Press Release: Disability Activists Urge Princeton University to Denounce Professor Peter Singer’s Comments, Call for His Resignation

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[Editor’s Note: For a PDF formatted version of this press release, go here.]

Princeton, NJ (PRWEB) June 09, 2015

Disability rights activists from Pennsylvania Not Dead Yet and New Jersey centers for independent living, as well as groups representing parents of people with disabilities, will be marching to Princeton University and holding a protest on June 10, 2015. Activists want Princeton to publicly denounce recent statements by Professor Peter Singer, promoting ending the lives of disabled infants through denial of health care, and for Princeton to take other steps to address what the activists describe as Singer’s “hate speech” toward disabled people.

“Since about 1980, Singer has promoted public policy that would legalize the killing of disabled infants in the first month of life,” said Stephen Drake, Not Dead Yet’s research analyst and expert on Singer. “More recently, he has expanded his position in the context of health care rationing.”

In 2009, the New York Times Magazine published an article by Singer titled ‘Why We Must Ration Health Care.’ In the article Singer spoke hypothetically of assigning a life with quadriplegia as roughly half that of a life without any disability at all. On this basis, Singer laid out a case for denying health care to people with significant disabilities on the basis that these lives have less value than the lives of nondisabled people. A response signed by 20 disability rights organizations was submitted to the magazine, criticizing the decision to seek out Singer as an analyst of healthcare and for the specific content of the article.

“This was probably Peter Singer’s most direct assault on the value of the lives of people with physical disabilities past the age of infancy,” said Drake.

On April 26, 2015 on “Aaron Klein Investigative Radio,” Singer again rationalized the killing of disabled infants. Three days later, the National Council on Disability, a council appointed by the U.S. President to provide advice on disability policy, issued a press statement on Singer’s comments during the show. According to the NCD release:

Singer told Klein that health care rationing is already happening, and surmised that hospitals routinely make decisions not based on need, but rather on cost. He then used the presumed practice to rationalize the killing of disabled infants by arguing in support of “non-voluntary euthanasia” for human beings who Singer contends are not capable of understanding the choice between life and death, including “severely disabled infants, and people who through accident, illness, or old age have permanently lost the capacity to understand the issue involved.”

In addition, Not Dead Yet issued a petition to Princeton through change.org.

“We understand the importance of academic freedom,” said Alan Holdsworth of Not Dead Yet Pennsylvania. “But Princeton has a policy on ‘Respect for Others’ which ‘deplores expressions of hatred directed against any individual or group.’ If Singer’s comments about killing disabled babies don’t qualify as hatred toward a group, then I don’t know what does.”

Protesters are demanding that Princeton take four actions to address Singer’s comments:

  • Call for Singer’s resignation.
  • Publicly denounce Singer’s comments.
  • Hire a bioethicist from the disability community in a comparable position to provide a platform for views that contrast with his.
  • Create a disability policy program at Princeton to educate future leaders on an inclusive community.

Coleman Op-Ed: Why disability rights advocates oppose assisted suicide

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This past Monday, the Syracuse Post Standard published an op-ed I wrote that gives a bit of the history behind the position that so many national disability groups have taken in opposing assisted suicide laws.  Our position often surprises people because we are also such strong supporters of self-determination by people with disabilities, but we also oppose discrimination, especially medical discrimination.  Here’s part of the discussion:

Those of us with serious disabilities have good reasons to be skeptical about the mantra of choice being used to market assisted suicide in our profit-driven health care system. Anyone could ask for assisted suicide, but the law gives doctors the authority to decide who is eligible.

Doctors used to exercise near-total control over the lives of people like me with significant disabilities, discouraging parents from raising such children at home, sentencing us to institutions, and imposing their own ideas about what medical procedures would improve our lives.

Disability groups started paying attention to the problem of doctors making life and death determinations in the 1980s in high-profile court cases involving the right to refuse treatment. One involved Elizabeth Bouvia, a 26-year-old woman with cerebral palsy who had a miscarriage and marriage breakup and wanted a hospital to make her comfortable while she starved herself to death. Other cases involved men on ventilators stuck in nursing facilities like Larry McAfee, who wanted the right to live in apartments or real homes, or else “pull the plug.” The doctors, courts, media and public all viewed these severely disabled individuals as the equivalent of terminally ill. They did not get suicide prevention equal to that offered nondisabled people, nor the right to live in real homes instead of facilities, but courts uniformly granted them a “right to die.”

Then the 1990s brought Dr. Jack Kevorkian, conducting assisted suicides using lethal drugs, with two thirds of his body count being people who were not terminally ill. As before, the difference between being disabled and dying was not recognized or considered relevant. As before, the difficulties disabled individuals faced in living – community access, getting a job, getting married – were not considered, or worse, accepted as rationales for ending their lives.

To read the whole op-ed, go here.  We were told that the piece would also appear in the print edition sometime this past week.  And there are a number of comments, including two from me and two from Stephen Drake in response to others.

Disability Advocates Demand Seat At the HHS Table In Design of Value-Based Healthcare Payment Systems

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Last Thursday, Not Dead Yet was one of “over 70 individual patients and patient organizations” that joined the Partnership to Improve Patient Care (PIPC) in a letter to the Department of Health and Human Services (HHS), calling for recognition of us as stakeholders in the Better, Smarter, Healthier initiative and in the Health Care Payment Learning and Action Network.  In fact, NDY was concerned enough to send our own letter as well.

PIPC issued a statement describing the need for the letter, in part, as follows:

While most patient stakeholders agree that paying for “value” rather than “volume” will result in better outcomes for patients, the shift to value-based payment holds significant implications for the patient-centeredness movement and the related issues of patient access and the physician-patient relationship. That’s why it’s important that patients have a seat at the table in determining how these new payment models are implemented.

The PIPC letter to Secretary Burwell hints that the initial invitations may not have included appropriate “patient” groups:

The pivotal shift to value-based payment holds significant implications for the patient-centeredness movement and the related issues of patient access and the physician-patient relationship. Patients’ voices need to be a part of this discussion. Therefore, we urge you to recognize patients as key stakeholders in this discussion, beginning with including patients within the Health Care Payment Learning and Action Network that will accelerate the transition to alternative payment models. Organizations representing patients and people with disabilities could provide a unique and valuable voice, in addition to the voices of state representatives, insurers, providers, business leaders and consumers whose participation has already been solicited.  (Emphasis added.)

The next day, Not Dead Yet sent our own letter to Secretary Burwell, emphasizing three points:

1)  Including “patients” among the stakeholders requires more than a token representation of the broad and diverse population of health care consumers. We are specifically concerned that people with disabilities and chronic health conditions are adequately represented in the process. While family members and disability-related professionals should also be included, such individuals and related organizations do not substitute for people with disabilities and the organizations that are run by us.

2)  It is essential that the initiative develop approaches that put individual patient self-determination as the top priority in establishing the value of health care treatments. PIPC rightly points out that a risk in alternative payment models based on “value” is that “value” may be defined in a “one size fits all” manner that does not recognize differences among patients . . ..   The urgency of avoiding this error cannot be overstated. If the bottom line is a system that determines value based on “majority rule”, that system will fail to meet the needs of individuals and will violate the core principles of self-determination.

3)  There is a risk that definitions of value that have previously been posited by self-appointed “bioethicists” will be foisted upon the stakeholders. Concepts such as “quality adjusted life years” and “disability adjusted life years” inherently devalue people with disabilities and chronic conditions and should not be used as a basis for the work of the initiative.

The full NDY letter is available here.

Additional Letters to Princeton Regarding Peter Singer – Bob Kafka (ADAPT) and Kathy Brill (Parent to Parent USA)

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Yesterday, we launched our Change.org petition “Denounce Lethal Anti-Disability Healthcare Policy Advocated by Peter Singer.” We presently have over 300 people who have signed on to the petition. Please add your own name by clicking here and following the directions.

In addition to the statement we shared and quoted from the National Council on Disability, there are two other important reactions to Singer’s latest assault on the lives and value of disabled people.

Long-time ADAPT leader Bob Kafka disseminated the following letter to fellow disability activists yesterday:

Dear Trustees of Princeton:

Peter Singer has the right to say anything he wants but a prestigious university is under no obligation to give him a platform to promote the killing of people with disabilities.

Would you have him head of a department if he justified the Nazi “final solution” by coming up with an inferiority equation on who lives and who dies?

What about the extermination of Transgender people because they didn’t conform to his equation of normalcy?

How about if he advocated the sterilization of all mothers on welfare if they have more than one child?

Peter Singer is an embarrassment to Princeton and a danger to people with disabilities and families with children with disabilities.

Please ask him to resign.

Bob Kafka

ADAPT of Texas

Kathy Brill, Executive Director of Parent to Parent USA, is circulating a letter she’s written to Princeton Trustees:

April 27, 2015

Dear Princeton University Board of Trustees,

As a national organization representing hundreds of thousands of families who have children with disabilities and special healthcare needs of all ages, Parent to Parent USA is appalled at Dr. Peter Singer’s position of infanticide for babies and children born with significant disabilities and health care needs, and join the movement demanding his resignation from Princeton University.

Recognizing our history as a disability movement, we acknowledge the difficulties previous families have faced with their children being born with certain severe health and disability conditions. Many of us have been told by health care professionals that our children would not be capable of living fulfilling lives and that their impact on our lives and our family’s would be detrimental. Yet, overwhelming numbers of families have stories that prove doctors and other professionals to be wrong in this prognosis. Our children have defied the professional’s predictions and have gone on to have productive lives. And, science and technology move forward with exponential leaps and bounds, assisting our children to meet high expectations and quality of life.

Parent to Parent USA provides access to quality parent to parent support across the country; providing emotional, informational and systems navigational support to families of children and young adults with disabilities and special health care needs. Parent to parent support helps families realize the full potential of their children – focusing on their abilities, rather than their disabilities; connects families to their community; and promotes the importance of raising all of our children to be contributing members of society. Does this sound familiar? It should, since it is Princeton University’s mission to inspire students to realize their full potential through self-discovery, connection to community, meaningful work, a love of learning, and a life of purpose.

In summary, Dr. Peter Singer’s position lacks reality, scientific insight, and any forethought regarding the impact his position would have on the uniqueness for freedom, democracy, and civil rights enjoyed by the members of our nation. Parents feel certain that Dr. Singer would better understand the lack of logic involved within his position if he had personal life experiences in this field.

Sincerely,

Kathy Brill

Executive Director