Introducing NDY’s New Assistant Director/Policy Analyst: Jules Good

May 18, 2022Jules Good, New Hampshire, Our News & Commentary BlogJules GoodDiane Coleman

NDY is thrilled to announce that Jules Good is joining our team as Assistant Director and Policy Analyst. This is a new position at NDY established to help implement NDY’s policy priorities at the state and national levels as they affect legislation, regulations, legal cases, and activities of government and health care providers in the areas of assisted suicide and euthanasia, withholding and withdrawal of life-sustaining treatment, futile care policies and more.

Jules Good, a white person with very short red-brown hair, pictured from the chest up, smiling. — Jules Good (they/them)

Jules Good (they/them) is a disability justice activist and policy analyst. They are late-Deaf and multiply-disabled. Jules holds a Master in Public Policy from the University of New Hampshire, and formerly worked as the Relay and Assistive Technology Outreach Specialist with Northeast Deaf and Hard of Hearing Services. They also founded their own organization, Neighborhood Access, which works with communities to help them make their presence and practices more accessible to disabled people. Jules serves as a member of the White House Office of Public Engagement Disability Advisory Council, as well as a member of the Fair Fight Action Disability Council. Jules has worked with nonprofits, state agencies, and private businesses to aid in making their practices and processes more accessible to the disabled community. They are deeply involved in disability justice work both locally in their current home state of New Hampshire, and nationally.

Please join us in welcoming Jules to the NDY staff!

“Jules brings a broad set of skills to NDY’s efforts, including strong social media experience and a crucial ability to communicate with and engage younger disabled people in these life and death issues.” – Diane Coleman, President/CEO, Not Dead Yet

“Our board is thrilled to welcome Jules into this important position where their passion for disability justice issues and nuanced communication skills will help expand the reach of our mission and work.” – Emily Wolinsky, NDY Board Chair

“I am thrilled and honored to be stepping into this role. I have admired NDY’s work for years and look forward to the opportunity to apply my skills and passion in this crucial area of disability policy. I am eager to engage with NDY’s partners and collaborate in building a world where disabled people can not only survive, but thrive.” – Jules Good, Assistant Director/Policy Analyst

Diane Coleman Interviewed Re Disability Opposition To NY Assisted Suicide Bill

May 13, 2022"death with dignity", aid in dying, assisted suicide, diane coleman, end-of-life options bills, media coverage, New York, Our News & Commentary Blogassisted suicide, end of life options, MAID, media, videoDiane Coleman

A recent news story on the New York assisted suicide bill included a one-minute interview with NDY’s founder and President/CEO, though the full story began and ended with a much longer video provided by the national organization that supports these bills.

Diane Coleman with breathing mask

Here are the NDY quotes:

“These policies are especially a danger to people with disabilities of all ages,” explained Diane Coleman of the disability advocacy group, Not Dead Yet.

Coleman said she’s studied other states where medical aid in dying is already in place.

“I think a lot of people assume it’s pain (why people choose to die) but that isn’t the case, the top five reasons are disability-related things like not being able to do the same things you used to do, feeling like a burden on others, feeling like you’ve lost your dignity,” she tells News10NBC.

All issues, Coleman says can be eased with access to proper home care.

“We also know that doctors aren’t that great at predicting the 6 months, I mean I’ve certainly experienced that and many disabled people have been told, well you’re on your last legs here,” she said.

Coleman also has concerns about the safety of the medication being in a home after it is prescribed and filled.

For the whole local news story and video, go HERE.

[Note: The title of the story – “Should terminally ill patients have the right to end their lives?” – is misleading because no one needs permission to end their own life. The purpose of assisted suicide laws is to grant broad legal immunities to 3^rd parties who assist the suicide.]

Video: NDY’s John Kelly Debates C&C’s Dan Diaz on Greater Boston

May 6, 2022"death with dignity", aid in dying, assisted suicide, better dead than disabled, debate, end-of-life options bills, john kelly, media, Our News & Commentary Blog, Second Thoughtsassisted suicide, John Kelly, Massachusetts, media, medical aid in dying, videoDiane Coleman

From WGBH, Boston’s PBS station: “Proponents of medical aid in dying, also known as physician-assisted suicide, say it can offer a peaceful death to those who are terminally ill. Critics say the process is unfairly stacked against people with disabilities. The two sides debated with Liz Neisloss on Greater Boston.”

An article samples quotes from the 15 minute TV broadcast (video below):

John Kelly, director of Second Thoughts Massachusetts, is opposed to the bill. An accident left Kelly paralyzed from the neck down at the age of 25. He said many people who have chosen physician-assisted suicide did so not because of pain, but because of a loss of abilities and feeling like a burden on others. He said those are the same issues disabled people face.

“My own father wished that I had died in the accident,” he said. “And people have told me they would rather be dead than be like me.”

He added that there’s a lack of proper home care, which can be expensive when available.

“People are faced with the choice of going to a nursing home or living at home with resentful helpers, not getting their needs met,” he said.

Disability Activists Crash Pro-Assisted Suicide Press Conference

May 2, 2022"death with dignity", aid in dying, assisted suicide, end-of-life options bills, New York, Our News & Commentary Blog, press release, protestsassisted suicide, Center for Disability Rights, disability protests, end of life options, ILC of Hudson Valley, NY Assn on Independent LivingDiane Coleman

Last Wednesday, five disability rights advocates surprised assisted suicide proponents with some direct action in Albany, NY. They were Alex Thompson from the NY Assn. On Independent Living, Zach Garafalo from Center for Disability Rights (CDR), and Julie Farrar, Cliff Perez and Aaron Baier from the Independent Living Center of the Hudson Valley.

The disability activists had received short notice of a pro-assisted suicide “rally” and press conference being held in the Capital and Legislative Office Building, so they made signs, grabbed NDY t-shirts and headed over. CDR also issued a press release (see below).

If there was a rally at the planned location, the activists must have missed it, but they muscled their way into the press conference room of about 20 people. When proponents spoke, claiming that the majority of disabled people support assisted suicide, one intrepid protester yelled “Bullsh*t!”.

In the flurry of activity, we only got one photo, featuring Aaron Baier with his sign (photo credit to Julie Farrar).

White man with strawberry blond hair wearing a Not Dead Yet t-shirt with black pants, holding a white cane, with a sign saying "Disabled Lives Are Worth Living", near a tripod sign saying "Compassion and Choices event is in Room 711A at 11:00 am". — Aaron Baier with NDY T-shirt and Protest Sign

CDR also issued the press release below, which resulted in an interview, but we’ve seen no article or coverage. Thanks to all involved in this direct action to make our voices heard!

FOR IMMEDIATE RELEASE: April 27, 2022

CONTACT: Zach Garafalo, Manager of Government Affairs, Center for Disability Rights, Albany, New York 12203 518-362-7916 or zgarafalo@cdrnys.org

CENTER FOR DISABILITY RIGHTS WARNS LEGISLATORS THAT PHYSICIAN ASSISTED SUICIDE IS A DEADLY PROPOSITION THAT PUTS DISABLED PEOPLE AT RISK

Albany: Although it is portrayed as a progressive rights bill, Disability Rights advocates urge state legislators to recognize that the Medical Aid in Dying Act (A4321/S6471) is an existential threat to Disabled New Yorkers. If passed and signed into law, the government will have abdicated its responsibility to ensure Disabled New Yorkers have equal protection under the law related to suicide prevention services. “Instead of being referred for suicide prevention services, Disabled people will be given the tools to end their lives,” said Rebecca Payton, CDR’s Senior Director of Independent Living Services.

This legislation endangers Disabled people who are at grave risk of coercion and abuse while creating an opportunity for insurance companies to enhance their bottom line. “Legislators can’t ignore that insurance companies and family members may financially benefit from the untimely deaths of Disabled New Yorkers,” said Bruce Darling, President/CEO of the Center for Disability Rights. “It’s awful, but abuse of elderly and Disabled individuals is a fact of our lives. This bill opens throws open the doors for the worst of that.”

Additionally, advocates warn that medical determinations about how long a person has to live are just guesswork. “My mother was diagnosed with small cell lung cancer which appeared unresponsive to treatment. She was given palliative treatments intended to alleviate her symptoms, but lived well beyond anyone’s expectations. In fact, she took us out to dinner to celebrate the five-year mark when she ‘beat’ her cancer”, said Darling. “I treasure those unexpected years which could have been lost if policies in our state were different.”

Disability rights advocates are particularly concerned about the impact on marginalized communities, particularly Black, Indigenous People of Color. “BIPOC Disabled people are at greater risk from assisted suicide laws because of racial disparities in health care,” said Ayishetu Salifu Mamudu, Deaf Systems Advocate at the Regional Center for Independent Living. “Although privileged white people present this as a rights issue, the reality is that BIPOC are in the cross hairs of this bad policy. I urge policy makers to recognize that and understand that in establishing this rights for some people, BIPOC individuals – and others – will die before their time. That is unacceptable.”

Although the bill is presented as helping people die peacefully, that argument is disingenuous because solutions already exist. “There is an alternative,” said Zach Garafalo, Manager of Government Affairs at the Center for Disability Rights. “Anyone dying in discomfort that is not otherwise relievable, already may legally receive palliative sedation, wherein the patient is sedated to the point that the discomfort is relieved while the dying process takes place. We already have a legal solution to any uncomfortable deaths that does not endanger others the way an assisted suicide law does.”

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NDY, DREDF and United Spinal Discuss Shavelson Euthanasia Case at Press Briefing

April 15, 2022"death with dignity", aid in dying, Anita Cameron, assisted suicide, court cases, diane coleman, dredf, euthanasia, media, Our News & Commentary Blog, Patients Rights Action Fund, press release, United Spinal Assn.assisted suicide, Dredf, euthanasia, Patients Rights Action Fund, Press conference, Shavelson case, United Spinal AssnDiane Coleman

Disability advocacy organizations NDY, DREDF and United Spinal partnered with the Patients Rights Action Fund (PRAF) to hold a press briefing on the Shavelson v. CA Department of Health Care Services case heard on April 14 in the federal District Court of Northern California. Video of the press briefing is available on PRAF’s Facebook page HERE. PRAF’s Press Advisory regarding the briefing is below.

San Francisco, CA – Thursday, April 14th, 2 PM PDT, the Patients’ Rights Action Fund partnered with local attorneys and disability rights activists to host a virtual news conference discussing the Shavelson v. CA Department of Health Care Services case (Shavelson). Shavelson challenges the requirement in California’s “End of Life Options Act” that patients who choose assisted suicide self-administer the lethal drugs.

The U.S. District Court for the Northern District of California (The Court) held a hearing on Thursday, April 14th at 10 am PDT on a motion to dismiss. The virtual press conference features legal and professional opinions, as well as personal testimonies from those whose lives have been or would be endangered by assisted suicide legislation.

WHO:

Diane Coleman: President, CEO, Not Dead Yet, a national disability rights group which she founded in 1996 to give voice to disability rights opposition to legalization of assisted suicide and euthanasia.

Jim Weisman: President, CEP, United Spinal Association is a dedicated advocate for over 38 years who helped expand disability rights and ensure access to transportation for wheelchair users in New York City and across the country.

Claudia Center: Legal Director, Disability Rights Education and Defense Fund (DREDF), a national, nonprofit law and policy center led by people with disabilities dedicated to advancing and protecting the civil and human rights of disabled people.

Anita Cameron: Director of Minority Outreach, Not Dead Yet, disability rights activist for nearly 40 years. Member ADAPT.

Matt Vallière: Executive Director of Patients’ Rights Action Fund hosts.

WHAT:

News conference discussing Shavelson “End of Life Options Act.”

By ending the self-administration requirement in the Act, the Courts would establish, for the first time in the U.S., legal euthanasia, a practice that even most groups who support assisted suicide oppose.