Showing posts with label Jules Good. Show all posts
Showing posts with label Jules Good. Show all posts

Thursday, March 6, 2025

Illinois assisted suicide bill is dangerous for people with disabilities.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Jules Good
Sela Estille reported for 25newsnow.com on March 5, 2025 that  Illinois assisted suicide Bill SB 9 received strong push-back from the disability community. Estille reported:
In a press conference on Wednesday morning, disability advocates such as the nonprofit Access Living called this idea “dangerous” to people living with chronic illness.

“I cannot overstate how dangerous this is,” said Jules Good, a spokesperson with the Stop Assisted Suicide Coalition.

“When I was at my lowest, if a doctor told me I could end this all, I would have. It’s only through years, compassionate support, and therapy and support that I’m able to stand here today and say I’m in recovery,” Good continued.
Senate Bill 9, that is sponsored by Senator Linda Holmes of Aurora was pulled from Committee debate on March 5 to enable amendments to the bill.

Tuesday, February 27, 2024

People with disabilities need help to live not to die.

This opinion was published by the New Hampshire Union Leader on February 26, 2024

Jules Good
By Jules Good

As New Hampshire considers legalizing assisted suicide, also referred to as medical aid in dying (MAID), I would like to draw attention to the potential impacts this bill could have on disabled and other marginalized residents.

I was 19 years old the second time I attempted to die by suicide. I had just been diagnosed with a chronic but not life-threatening illness, I had rapidly lost about 70% of my hearing in the middle of completing a music degree, and I was struggling with untreated anorexia that was taking a serious toll on my health.

At my intake appointment with a new therapist a few days after my attempt, I explained my situation and the hopelessness I was feeling. She nodded along, then looked me in the eyes and said something I will never forget:

“I would probably kill myself if I were you.”
She wasn’t the first person to say this to me as I started becoming more noticeably disabled, but she was probably the last person I expected to do so. Now that I work in disability policy, nothing surprises me. I hear stories from other disabled people about doctors pressuring them to sign DNRs because they are assumed to have a low quality of life due to their disability. I get messages on social media from people asking me how to advocate for appropriate pain management when their doctors don’t believe the amount of pain they’re in. I pore over story after story of people like Michael Hickson and Tinslee Lewis having treatment withdrawn, withheld, or threatened because of the pervasive view that it’s better to be dead than disabled.

This is why I am critical of policies that are biased toward ending the lives of people with significant disabilities rather than toward preserving them — policies like legally-assisted suicide.

Assisted suicide and the discussion around terminal illness in general has historically been framed as an issue for older adults. Young people aren’t “supposed to” have to think about death, yet adulthood for twenty-somethings like me continues to be shaped by a deadly pandemic, mass shootings, and systemic violence. We’ve heard story after story of perfectly healthy young people who got infected with COVID and are now permanently and significantly disabled.

One of my neighbors, a man in his early 30s, was a victim in a shooting that claimed the life of his 8-year-old son. He sustained permanent physical disabilities from the gunshot wound. Now more than ever, young people need to be invested in equitable treatment for disabled people, not only because we are human beings who deserve care, but also because the odds of younger people becoming disabled or caring for a disabled person are continually rising.

While proponents claim that assisted suicide is only for “terminally ill people who are about to die anyway,” they ignore the fact that many disabilities can become terminal if left untreated. In our for-profit healthcare system, denying or merely delaying care can make an otherwise manageable disability terminal. Medical racism and transphobia increase barriers to care, resulting in BIPOC and trans people reporting postponing or avoiding medical care due to discrimination.

Up to a quarter of people with chronic illnesses have chosen not to fulfill a prescription to manage their condition because of cost. The more vulnerable a person is, the more likely they are to be “steered” toward assisted suicide. It doesn’t take direct coercion to make this happen; a system where death seems like the best or only option for the most marginalized patients is not a system that needs a legal avenue for doctors to help us die.

As my colleague and prominent disability justice activist Anita Cameron has written, disabled people need “supports to live, not tools to die.” A policy of assisted suicide is not an avenue for bodily autonomy or choice; it is yet another tool that can be used to deny care to those who need it most.

Newmarket’s Jules Good is a disability policy professional and activist.

Tuesday, August 30, 2022

Response: “Neurologic Diseases and MAiD” in The American Journal of Bioethics

This article was published by Not Dead Yet on August 30, 2022.

Jules Good writes in response to “Neurologic Diseases and MAiD: Aid-In-Dying Laws Create an Underclass of Patients Based on Disability” by Lonny Shavelson, Thaddeus M. Pope, Margaret Pabst Battin, Alicia Oulette & Benzi Kluger, published in The American Journal of Bioethics 16 August 2022:

Jules Good
Legal assisted suicide puts disabled people in danger of being killed on the basis of disability alone. This is especially true when assisted suicide laws allow someone other than the patient to administer the drug. The authors claim that denying someone euthanasia is an ADA violation. Their argument is that getting assistance in administering the lethal drug should be seen as a “reasonable accommodation” used to allow someone without the physical capacity to take the drug access to assisted suicide. The provision of the ADA cited in the article to support this claim states that “No qualified individual with a disability shall…be excluded from participation in or be denied the benefits of services, programs, or activities of a public entity, or be subjected to discrimination by any such entity” when reasonable accommodation can be provided.”

There is a much more compelling case for invoking the ADA here that focuses less on making it easier for disabled people to die and more on making it easier for us to live life on our own terms. In places where assisted suicide is legal, disabled people who wish to die (some actually terminal, some not) are given the tools to do so, while nondisabled people who wish to die are given access to mental health resources. Is being coerced toward “choosing” death really an example of disabled people accessing the “benefits of services, programs, or activities of a public entity”? Is being denied mental health treatment because our lives are seen as less valuable than the lives of nondisabled people not a more pressing example of the ADA being violated?

Thaddeus Pope, co-author of the article, has himself admitted that he sees having a disability, and not exclusively a “terminal” prognosis, as an acceptable reason for someone to be permitted to die by assisted suicide. We reject this notion. True healthcare includes treatment and resources that allow someone to live with as little pain and with as much independence as possible. Legal assisted suicide, which, on a systemic level, results in the premature and unnecessary deaths of our community members, is not a “service, program, or activity” that disabled people “benefit” from. This is a blatant misuse of the ADA.

It is clear that the authors of this article are out of touch with the core tenets of disability justice, which state in part that we have a responsibility to keep each other safe. Policies that champion the desires of individuals over the safety and vitality of the most marginalized disabled people are not grounded in a true disability justice framework. Disabled people do not need more help dying. Crisis standards of care in the face of COVID-19 that deprioritize us for treatment, our profit-driven healthcare system that regularly denies care to those who need it most, and a general societal attitude that people are “better off dead than disabled” make death more accessible to us than life. The ADA, while imperfect, was passed because the disabled community worked to ensure that the inherent value of our lives would be recognized in the eyes of the law. It should not be used to further jeopardize the safety of the most vulnerable members of our community.