National Day of Mourning March 1st

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Thanks to our colleagues at the Autistic Self Advocacy for their leadership in creating and annually organizing a National Day of Mourning in cities across the country on March 1st, in the honor and memory of people with disabilities killed by family members and caregivers. It is not to late to sign up as a site and use ASAN’s helpful toolkit to create a local event. Below is ASAN’s announcement.

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In the past five years, over four hundred people with disabilities have been murdered by their parents, relatives or caregivers.

On Wednesday, March 1st, the disability community will gather across the nation to remember these disabled victims of filicide – disabled people murdered by their family members or caregivers.

In the year since our last vigil, our community has lost 100 more people to filicide. These are just the cases that we are aware of – since we began monitoring this issue, we learn about more murders every week. We read the victims’ names, see their photographs, and gather what information we can about their lives. The criminal justice system has continued to give lighter sentences to parents and caregivers who murder disabled children. And we have seen both news and entertainment media continue to portray these murders in a sympathetic light.

We hold the Day of Mourning vigils to draw attention to these injustices, to commemorate the lives of victims, and demand justice and equal protection under the law for all people with disabilities. This would not be possible without the vital work of our volunteer site coordinators. Click here to learn about what site coordinators do, or to sign up to lead a vigil.

For the last six years, ASAN, ADAPT, Not Dead Yet, the National Council on Independent Living, the Disability Rights Education & Defense Fund, the American Association of People with Disabilities, and other disability rights organizations have come together to send a clear message that disability is not a justification for violence. We’ll be at our local vigils on Wednesday, March 1st – and we hope to see you there.

If you’re interested in leading a vigil in your area, please sign up to be a Day of Mourning vigil site coordinator.

Carrie Ann Lucas Public Radio Interview About Jerika Bolen – A Captioned Video

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[Thanks to John Kelly and Frankie Symonds for creating this video. Carrie is among those who received recognition from New Mobility for trying to save Jerika’s life.]

Last July, news broke that Appleton, Wisconsin 14-year-old Jerika Bolen had decided to die because of the extreme pain she was in, pain attributed to her genetic condition, spinal muscular atrophy (SMA) type II.

While the media celebrated her suicidality as “brave” and “inspirational” in the face of tragic, “wheelchair-bound” suffering, disability rights advocates with SMA and similar neurological conditions tried working behind the scenes to get Jerika the pain relief and mental health attention any suicidal teenager deserves.

Community and national attention helped the family raise $36,000 for a pre-suicide prom specifically for Jerika, who was crowned prom Queen.

Her pediatric palliative care specialist, Dr Kari Stampfli, violated a tenet of palliation (there are always new treatments to try) by publicly giving up on her .

On August 4, Not Dead Yet joined Disabled Parents Rights, the Autistic Self Advocacy Network and NMD United in sending a letter to the Wisconsin Department of Children and Families asking it to intervene in the case. The Wisconsin protection and advocacy organization Disability Rights Wisconsin sent a similar letter.

The letter questioned the quality of her medical care, evidenced by the 30-38 surgeries she had reportedly had, her extreme pain and improper pain management – pain does not typically accompany SMA. The groups wrote that the approval that greeted Jerika’s decision to die was based on Jerika’s use of a wheelchair and part time breathing assistance. Any other suicidal teenager would receive suicide prevention services.

Our intervention on behalf of a teenager’s right to effective pain management and mental health services was attacked in the press.

Jerika entered hospice as planned in early December, dying 18 days later, most likely by sedation coupled with starvation and dehydration.

We mourned her death, writing:

Our grief at the tragedy of her loss is exponentially magnified by the certainty that the story told in the press will inspire others with disabilities and their parents to repeat this tragedy.

Those of us with disabilities dream of equality and justice. Jerika Bolen deserved better quality health care and the same suicide prevention that a non-disabled teen would receive. We ask one last question: What might have happened if Jerika’s request for a “last dance” had been met with overwhelming public and media encouragement to live instead of a massive thumb on the scale in support of her death?

On October 6, disability rights lawyer and executive director of Disabled Parents Rights, Carrie Ann Lucas, went on the Joy Cardin show to discuss the Jerika Bolen case.

Carrie Ann mounts a comprehensive case on behalf of Jerika’s right to suicide prevention services and to quality medical care.

People with spinal muscular atrophy type II live into late adulthood. Some people live into their sixties and seventies and beyond, but most people live into at least late adulthood. So this is not something where she was imminently dying. This was not a child who was facing death.

Adults have the right to self-determination. The issue is, we don’t let other children die by suicide, any other child that did not have a disability. But, because of her disability, she was allowed to enter hospice to cause her death. We would not allow that to happen to any other child. But we should not be saying it’s okay for a disabled teenager to die, just because people who don’t have disabilities imagine what a poor quality of life she must have. Because they can’t imagine in their own heads what it would be like to live with a disability, even when in fact those of us living with a disability, those of us with the same disability, are telling you something very different. We are the experts in this, not an uninformed and biased public. There was something else going on in Jerika’s situation, but no one gave her the suicide prevention and other support she needed, and she’s gone.

We hope that people will listen to the disability community, and stop this tragedy from being repeated.

 

Disability Advocates Blast Intro of Another NY Assisted Suicide Bill

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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

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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

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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.]