The federal Department of Health and Human Services (HHS) is proposing important and beneficial new regulations under Section 504 to clarify how the law prohibits healthcare discrimination based on disability. The notice of proposed regulations from the federal government is full of examples of disability discrimination by healthcare providers. For example, based on a report from the National Council on Disability, the notice states:
In its report, Medical Futility and Disability Bias, NCD discusses the example of Terrie Lincoln who, at age 19, was in an automobile accident that severed her spinal cord and caused her to become quadriplegic. The report describes that when Terrie “was in the hospital just following her accident, Terrie’s doctors repeatedly tried to influence her family to `pull the plug,’ stating that Terrie was a `vegetable’ and, even if she were to regain consciousness, would have no quality of life.” When Terrie did regain consciousness, she was pressured by her doctors to forego additional medical treatment that would extend her life due to judgments that life with the disability of quadriplegia was not worth living. This would be a violation of the proposed regulation….Terrie persisted, later coming off the ventilator, earning degrees in social work and public administration, and becoming a disability rights advocate and mother.
The notice requests public comments on the proposed regulations and includes specific questions concerning examples of healthcare discrimination. Public comments can be submitted HERE.
One of the topic areas and questions is:
84.56(c)(1) Professional Judgment in Treatment…
Medical Treatment Question 3: The Department seeks comment, including from health care professionals and people with disabilities, on the examples described in this section, whether additional examples are needed, and on the appropriate balance between prohibiting discriminatory conduct and ensuring legitimate professional judgments.
A very helpful explanation of the proposed rule and how to submit a public comment or personal story of healthcare discrimination is provided by the Autistic Self Advocacy Network HERE.
(10/20/23, Boston, MA) Nationally renowned disability activist Anita Cameron testified at a hearing this morning before the Joint Committee on Public Health of the Massachusetts legislature in opposition to a proposed bill to legalize assisted suicide. Witnesses were given only two minutes each. This is her testimony:
Testimony against H. 2246/S. 1331 End of Life Options Act
I’m Anita Cameron, Director of Minority Outreach for Not Dead Yet, a national disability rights organization opposed to medical discrimination, healthcare rationing, euthanasia and assisted suicide.
I am here in opposition to H. 2246/S. 1331, the End of Life Options Act
I live with intractable pain. I have multiple disabilities. Two are degenerative. One will take my life. One of my conditions, though chronic, can become terminal if I lose access to treatment.
These laws are dangerous because though they are supposed to be for people with six months or less to live, doctors are often wrong about a terminal diagnosis. My mother, while living in Washington state, was determined to terminal and was placed in hospice. She didn’t die, but lived almost 12 years!
This law will put sick people, seniors and disabled people, especially, at risk due to the view of doctors that we have a lower quality of life, therefore leading them to devalue our lives. Now add race and racial disparities in healthcare to this. Blacks, in particular, receive inferior health care compared to whites in the areas of cardiac care, diabetes, cancer and pain management.
What’s especially dangerous is that in states where it’s legal, if you lose access to healthcare, turning your chronic condition into a terminal one, you can request assisted suicide. It’ll be cheaper to kill you than to care for you.
As long as disability discrimination and racial disparities in healthcare exist, assisted suicide laws have no place in Massachusetts.
Lonnie VanHook is also one of the plaintiffs in this case which was brought under the Americans with Disabilities Act to overturn this law as a deadly form of discrimination. Everyone who dies by assisted suicide is disabled, even if they don’t think of their impairments that way. Moreover, data shows that disability issues are their reasons for requesting assisted suicide. Making assisted suicide part of the healthcare system is a danger to us all.
Please watch Lonnie tell his story and consider signing the petition supporting his case.
A letter to the editor from Diane Coleman was published in the New York Times recently. Published September 25th, it was sandwiched between two letters in favor of legalizing assisted suicide. All three lettersreacted to A Lawsuit Aims to Expand Aid in Dying by Paula Span which first appeared in the NYTimes and later in “The New Old Age” column, Science Times, Sept. 19. Here is Coleman’s letter:
To the Editor:
This article assumes that physician-assisted suicide is acceptable health policy. However, there are two significant questions that states should address when considering its legalization: Should it be a medical treatment, and what are the harms of legalizing it?
On the first, many in the medical profession oppose physician-assisted suicide, including the American Medical Association, which holds that it “is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks.”
On the second question, major disability rights organizations oppose physician-assisted suicide because it increases the risks that people with disabilities face in receiving medical care, as they are already too often subject to unequal treatment.
Adding physician-assisted suicide as a medical treatment exposes people with disabilities to systemic pressures to end their lives in the context of life-threatening illnesses. Before adopting physician-assisted suicide, or any extension of it, we need to ask, answer and understand the implications of such a step.
Diane Coleman Rochester, N.Y. The writer is president and C.E.O. of Not Dead Yet, a disability rights group that opposes legalization of assisted suicide.
It’s very rare to see even lengthy articles about assisted suicide include more than relatively brief acknowledgement of opposing voices from the disability community and rarer still from other progressives. Therefore, we were impressed to see the Yale University student newspaper, The New Journal, publish an extensive pro/con article by Anouk Yeh featuring substantial discussion with Connecticut leaders Joan Cavanagh and Cathy Ludlum representing Progressives Against Medical Assisted Suicide and Second Thoughts CT, respectively. Short excerpts from The Debate for Dignity‘s segments opposing assisted suicide laws are below and the whole article can be read HERE.
Progressive Opposition
When I meet Joan Cavanagh, she makes two things very clear. First, her concerns about aid in dying aren’t religious. Second, while she has always been opposed to aid in dying, or assisted suicide, as opponents of the procedure call it, she only started “militantly fighting” against its legalization after her mother’s passing.
Long silver hair and a pair of black, rectangular glasses frame Joan’s face. The first time we meet, I’m intimidated by her incisive, no-frills demeanor—she’s terrifyingly articulate and emails without exclamation points. Throughout our meeting, though, I find myself warming up to her vulnerability and occasional jokes.
Joan is one of the founding members of Progressives Against Medical Assisted Suicide (PAMAS), a Connecticut-based grassroots organization fighting SB 1076 and variations of the bill that have come before it. PAMAS opposes aid in dying on the basis that its legalization would inevitably lead to its weaponization against economically, socially, and racially marginalized individuals.
It, along with other organizations, has been fighting to “provide a path for leftists and progressives who have social justice concerns” about aid in dying and to disrupt the notion that the opposition is exclusively religious and conservative….
***
Disability Rights Opposition
According to Cathy Ludlum, a disability rights activist, there is a long history of the medical industrial complex turning to assisted suicide to avoid accountability for bettering palliative care for terminally ill and disabled individuals. Cathy, a longtime Manchester, CT resident, founded Second Thoughts Connecticut, a disability rights organization fighting against the state legalization of aid in dying.
After a few back and forth emails, the two of us finally hop on a video call together. Cathy uses a wheelchair and joins our conversation clad in thin-rimmed glasses and a toothy grin. In the middle of exchanging introductions, Cathy turns from the Zoom camera and directs her voice towards her computer.
“Computer, wake up. Mouse click. Mouse 5…674.”
Refined by years of practice, Cathy navigates her computer exclusively using voice commands. When I ask Cathy how she started organizing against medical aid in dying, she jumps in and asks me to use the term “assisted suicide” instead.
“Medical aid in dying as a term, really, is misleading,” Cathy says. “If someone is assisting someone in their transition [to death], that would be hospice—assisting the person to be comfortable in their health, alleviating anxiety, existential concerns, and clinical concerns.”
…I look at Cathy, who’s sitting in her wheelchair, and her implicit argument becomes clear: If assisted suicide is legalized, my life and right to live become at risk.
