Disability Advocates Blast Intro of Another NY Assisted Suicide Bill

Disability advocates in Albany and Rochester led reactions to the reintroduction of assisted suicide bills in New York on Monday, January 23rd.

Terminal patients ask New York to legalize help with dying (WHAM Cha 13) included footage from Not Dead Yet’s 1997 U.S. Supreme Court rally against assisted suicide in the case brought by Rochester’s Dr. Tim Quill. Many of us were there, including NDY’s new Director of Minority Outreach, Anita Cameron, shown in video and quoted in Monday’s story.

As the US Supreme Court took up the life and death issue, busloads of disabled people from Rochester were among the hundreds protesting outside. “We were all there for one purpose. To speak out against it,” said Anita Cameron, who was there.

Cameron has MS and suffers a degenerative brain disorder that is stealing away her motor functions. She also works with a group called “Not Dead Yet.” “Society almost teaches that you’re being brave and unselfish if you choose to kill yourself,” she told 13WHAM’s Jane Flasch. . . .

Some people who are disabled see it as promoting a “better dead than disabled” mindset. “These laws are inherently discriminatory against people with disabilities. But I can live a great life as a person with a disability without being a burden,” said Cameron.

Lawmakers in Albany revisit ‘aid in dying’ bill (WROC Cha 8) included both video and an article:

Advocates were in Albany on Monday to reintroduce a bill that would allow mentally competent, terminally ill adults to end their own lives – a bill that’s not sitting well with some local disability rights advocates.

“Our concern is that people who are already in a depressed state because of the cancer or other experiences they’re having, instead of receiving help to live, they’re being given help to die,” said Stephanie Woodward, of the Center for Disability Rights..

The bill would only apply to those who are expected to live fewer than 6 months, but Woodward says she fears the bill leaves room for issues to arise.

“Another fear is that people will be coerced or abused into assisted suicides,” she said.

Woodward says she believes the argument of preventing pain in the terminally ill is not a valid one.

“It’s not necessary, because we have enough pain treatment that no one should have to die in pain,” Woodward said.

Advocates for aid in dying reintroduce bill (Albany Times Union) stated:

But a few opponents of the legislation said Monday that no modification could make physician-assisted suicide safe enough to win their support. They fear patients may be pressured to choose aid in dying or fall prey to heirs seeking speedier access to their inheritance.

Insurance companies might encourage policyholders to take advantage of such a law to reduce medical expenses, they said.

“There’s no way to open this door just enough,” said Adam Prizio, government affairs manager for the Center for Disability Rights. “No matter where you open it, some number of people with disabilities will be killed through coercion, through abuse, or through insurance companies trying to save money.”

Finally, NY again considers doctor-assisted suicide (Journal News) reported:

Julie Farrar, a policy fellow for the Center for Disability Rights Inc., which has offices across upstate, contended the bill doesn’t have enough protections in place to prevent wrongdoing, especially when it comes to families who may be financially incentivized to end a family member’s life due to rising medical costs.

“I’m very wary of physicians being give the legal immunity and right to prescribe a drug or mixture of drugs to end a patient’s life,” she said.

Some assisted suicide bill proponents try to make it seem that disability advocates are fighting against terminally ill people. Actually, we are fighting for everyone. Think of us as the canaries in the coal mine – we live on the front lines of a health care system that is too often focused more on money than care. We know how easy it is for protections to fail, for mistakes to be made, for pressures to be felt. But, unlike the proverbial canaries, we are not expendable, and neither is anyone.

Meet NDY’s New Director of Minority Outreach, Anita Cameron

Hello, I’m Anita Cameron, Director of Minority Outreach. Though I’m a new employee, I’m no stranger to Not Dead Yet. I’ve been a member almost since its inception and served on the Board of Directors for two years.

I live at the intersection of a number of communities. As a Black disabled lesbian, the work of Not Dead Yet resonates with me and I am honored to serve in this position. My 36 years of work for social justice and change, including 31 years of disability advocacy and activism, will be a great asset in my new position.

The position of Director of Minority Outreach was created because Not Dead Yet recognizes that minority/marginalized communities of people with disabilities are more vulnerable to ableist, racist, homophobic, transphobic and ageist practices inherent in our healthcare system, which places us at a greater risk of coercion into physician assisted suicide.

My job is to reach out to, and organize disabled people within communities of color, the LGBT community and other minority communities, primarily in New York State, to educate them about the dangers of assisted suicide legislation from the perspective of the disability community. I will also work with state legislators, making them aware of any such legislation and urging them to vote no when it comes to the floor of the Assembly or the Senate.

I’ll be working closely with the Advocacy and Policy teams at the Center for Disability Rights in Rochester and Albany, and will be conducting research and writing blogs, op-eds, media pieces and webinars. Look for those in the very near future!

I’ll also participate in national conference calls and multi-state outreach related to the work of Not Dead Yet.

Finally, I will represent Not Dead Yet on the Task Force on Racism convened by the National Disability Leadership Alliance.

With the introduction of new assisted suicide legislation in both the New York State Assembly and Senate, my arrival could not have come at a more important time. I am looking forward to rolling up my sleeves and beginning the hard, yet vitally important work to combat the “better dead than disabled” mindset and rhetoric that is prevalent in our society.

Urge Your Congress Members to Attend Assisted Suicide Briefing Jan. 12th

Two of the speakers at a January 12th Congressional Briefing on assisted suicide will be disability rights advocates: Anne Sommers, Board Chair of Not Dead Yet, and Lindsay Baran, Policy Analyst of the National Council on Independent Living. Please urge your members of Congress to attend this important bipartisan briefing on Thursday, January 12, in room 2361 of the Rayburn House Office Building from 2:30-3:30 p.m.

Below is NCIL’s Action Alert concerning the Briefing:

Action Alert: Tell Your Members of Congress to Attend Physician Assisted Suicide Briefing on January 12
Along with many other disability organizations and activists, NCIL has long opposed the legalization of physician assisted suicide. Last year, the disability community fought dangerous bills that popped up all around the country, and this year we expect to have to fight just as hard. The list of concerns the disability community has about these bills is long. From the weak safeguards, to the risk of abuse and coercion, to the negative impact on access to healthcare, these bills are dangerous for people with disabilities. 
Next week, Congressman Wenstrup (R-OH) will be hosting a briefing entitled “Physician Assisted Suicide: Dangers for U.S. Health Care.” NCIL’s Policy Analyst, Lindsay Baran, will be providing remarks along with Anne Sommers from Not Dead Yet and Dr. G. Kevin Donovan from the Pelligrino Center for Clinical Bioethics and the Georgetown University Medical Center. The briefing will be held next Thursday, January 12, in room 2361 of the Rayburn House Office Building from 2:30-3:30 p.m.
It is very uncommon for Congress to address this issue, and it is an exciting opportunity for the disability community’s concerns to be heard. In order to get the biggest turnout possible, we need NCIL members from around the country to encourage your Representatives and Senators to send their staff to this briefing! Please contact your members of Congress and ask them to make sure their offices are represented at this important briefing next week. We need to continue to work together to remind legislators that people with disabilities should not have to die to have dignity.

[Editor’s Note: For a listing of national disability organizations that oppose legalizing assisted suicide, go here.]

New Mobility Highlights “2016 People of the Year: The Resisters”

Few in the disability community would argue about 2016 being a hard year – assaults on the Americans with Disabilities Act, assaults on our access to education, assaults on safety nets many of us rely on – and of course – assaults on our right to dignified lives in the form of policies and rhetoric that suggest the only “dignity” old, ill and disabled people can find is through our voluntary suicides.

New Mobility‘s article “2016 People of the Year: The Resisters” by Josie Byzek highlights the activivists/organizers who took on some of the high-profile “better dead than disabled” issues last year. Here’s the opening paragraph:

Activists with Disabilities Fight Back Against the Forces of ‘Better Dead than Disabled’

From the movie Me Before You to the untimely deaths of 5-year-old Julianna Snow and 14-year-old Jerika Bolen, our society’s message of “Better Dead than Disabled” is as insidious as ever. Those disabled activists who resist this message are often met with scorn, even death threats, yet they stay strong in their fight to defend the lives that are so often devalued by others. This year, we are breaking from our tradition of naming one Person of the Year to instead honor the activists who we are collectively calling The Resisters: Carrie Ann Lucas, TK Small, Emily Wolinsky, Diane Coleman, Dominick Evans, Tari Hartman Squire, Ellen Stohl and so many more. Lead on!

Please go to New Mobility and read the entire story.

(Editor’s note: New Mobility is an important asset to the disability community. If you like what you read, consider taking advantage of one of the magazine’s subscription options.

 

Not Dead Yet and Respecting Choices Announce Successful Collaboration

Not Dead Yet and other disability advocates and rehabilitation physicians have worked with Respecting Choices, a national leader in the field of advance care planning, to develop fact sheets on feeding tubes and breathing supports. Today, they announce the results of an over two year collaborative effort.

The project began following an open letter from disability advocates dated December 2013. According to the letter, previous versions of the documents expressed a strong bias against long-term use of feeding tubes, BiPAPs and ventilators, potentially discouraging health care consumers and medical professionals from using these life-sustaining devices except for short-term recovery and not as part of a viable disability lifestyle. The Not Dead Yet open letter was signed by over thirty disability organizations as well as twenty-five individuals who have successfully used one or more of these devices for years, and in some cases for decades.

In response to the letter, Respecting Choices began a dialogue with disability advocates, which led to a productive exchange and, ultimately, to substantially revised fact sheets on feeding tubes and breathing supports. These documents are intended to provide consumers, as well as legal and medical advisors, important information for health care decision-making and advance directives.

A formal joint announcement is below and can also be viewed online on the Respecting Choices website, and the revised fact sheets are online (feeding tubes, breathing supports) and available for purchase from Respecting Choices.

Dear Colleagues:

In December 2013, a number of disability organizations and individuals jointly expressed their concerns about two healthcare decision-aids created by the Respecting Choices® program. One of these decision aids focused on the use of medical nutritional support for those with serious illness and the other focused on breathing support for those with serious illness. The concerns expressed were that these decision aids were incomplete and biased or misleading, and could result in uninformed decisions and harm to people with disabilities, including loss of life.

Once these concerns were expressed, the leaders of Respecting Choices recommended that representatives from Respecting Choices and these disability advocates work together to consider improvements to these two decision aids. This work was complicated and required an over two-year effort to form a balanced committee and exchange information and perspectives, as well as considerable back and forth dialogue concerning language to ensure effective communication.

The result of this work and collaboration, however, has been the development of two revised decision aids that address the concerns of both the disability advocates involved and the person-centered standards of the Respecting Choices program. We hope that these revised and improved decision aids will help all patients make better informed decisions about when medical nutritional and breathing support will and will not be helpful depending on the individual’s medical condition and goals.

We also hope that this process of collaboration will serve as a model of cooperation between healthcare professionals and disability or other diverse groups when they have differences, especially in the field of healthcare decision-making and advance care planning.

We want to express our thanks and appreciation to all those who contributed to this effort including Linda Briggs, MS, MA, RN, Dr. Carol Gill, Ph.D., Dr. Kristi Kirschner, M.D., Cathy Ludlum, Stephen Mendelsohn, Sandra E. Schellinger, MSN NP-C, and Dr. Lisa Wolfe, M.D.

Sincerely,

Diane Coleman Bernard “Bud” Hammes
President
Not Dead Yet
Director
Respecting Choices