On Wednesday, September 16, a public hearing was held by the Health Equity Task Force of the Massachusetts Public Health Committee. The legislative website stated that “[t]he virtual hearing is to receive testimony from the public on findings and recommendations that address health disparities for underserved or underrepresented populations during the COVID-19 pandemic, pursuant to the Health Equity Task Force established by section 2 of Chapter 93 of the Acts of 2020.”
John Kelly testified on behalf of Second Thoughts Massachusetts.
John’s oral testimony can be read at NotDeadYet.org.
John’s written, submitted testimony can be downloaded: John_Kelley_Health_Equity_Task_Force.docx, and is also copied in it’s entirety below.
Testimony Before MA Health Equity Task Force – Regarding Crisis Standards of Care and Suicide Prevention Services for Disabled People
Thank you. My name is John Kelly and I am the director of Second Thoughts MA: disability rights advocates against assisted suicide. We also oppose policies, actions, and media that demean the lives of disabled people, such as the state’s Crisis Standards of Care (CSC) and lack of attention to suicide prevention services for disabled people.
Under pressure from advocates, the Department of Public Health (DPH) has dropped from its CSC some of its discriminatory criteria for triage decision-making. But it continues to insist on using estimated five-year survival rates against disabled people, who are disproportionately Black and Brown. That’s discriminatory on grounds of both disability and race.
The Office of Civil Rights confirmed this discrimination in its recent settlement with Utah, writing that “Survivability is a factor that can be fraught with speculation, mistaken stereotypes, and assumptions about the quality of life and lifespan of people with disabilities.” In a triage situation, Utah, and thus Massachusetts, can only consider “short-term mortality.” Massachusetts must make an individualized assessment based on the most objective information available. I look forward to a state CSC that values all lives equally.
DPH must also affirm that disabled people are entitled to suicide prevention services. In May, I attended DPH’s annual suicide prevention conference, titled “Building and Sustaining Hope Virtually: Reshaping the Conversation to Reduce Suicide.” I was shocked to hear a presentation wholly centered on assisted suicide, including a timeline of Western thinking on suicide, from Socrates to the French sociologist Emile Durkheim to Jack Kevorkian! The presenter justified their presentation by saying that assisted suicide had been discussed before and “may come back again.”
When the New England Journal of Medicine examined 69 of Kevorkian’s 130 victims, it found that three quarters were not terminally ill, but disabled. Not terminally ill. Disabled, and almost certainly depressed. Some had no physical condition at all. The typical profile was of a woman with a chronic illness or disability who was depressed over a recent life upset.
In Oregon, the reported end-of-life concerns are all about existential distress regarding disability. People ashamed about depending on others, humiliated by feeling like an undignified burden, or traumatized by incontinence get only suicide completion services. So at a suicide prevention conference, the state entity tasked with protecting all of us from suicide promoted a rabid killer of disabled people.
In this state, suicide prevention organizations tacitly support assisted suicide by not taking a position against it. The State’s suicide prevention plan offers almost nothing to us.
DPH should adopt Connecticut’s commitment to preventing disabled people’s suicides. Its plan acknowledges that assisted suicide negatively impacts disabled people because of its operating principle that disability is a “fate worse than death.”
Connecticut’s plan states that: Until recently, the Connecticut Suicide Advisory Board (CTSAB) was considering assisted suicide of the terminally ill as a separate issue from suicide prevention. The active disability community in Connecticut, however, has been vocal on the need for suicide prevention services for people with disabilities. There may be unintended consequences of assisted suicide legislation on people with disabilities. Peace (2012) writes that “Many assume that disability is a fate worse than death. So we admire people with a disability who want to die, and we shake our collective heads in confusion when they want to live.” People with disabilities have a right to responsive suicide prevention services. The CTSAB intends to continue to explore the needs of the disability community for such services.
We disabled people demand responsive suicide prevention services.
To conclude, disabled people in this state, as much as anyone, deserve equal medical care and suicide prevention services. We disabled people are human beings who demand full respect from our state. Thank you.
John B. Kelly
OCR Resolves Complaint with Utah After it Revised Crisis Standards of Care to Protect Against Age and Disability Discrimination. https://www.hhs.gov/about/news/2020/08/20/ocr-resolves-complaint-with-utah-after-revised-crisis-standards-of-care-to-protect-against-age-disability-discrimination.html
Oregon end of life concerns, page 12 – https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year22.pdf
Letter to the New England Journal of Medicine, “Dr. Jack Kevorkian and Cases of Euthanasia in Oakland County, Michigan, 1990–1998,” N Engl J Med 2000; 343:1735-1736. DOI: 10.1056/NEJM200012073432315. Scroll down to pages 1735-36 for full text at https://www.researchgate.net/publication/12146490_Dr_Jack_Kevorkian_and_Cases_of_Euthanasia_in_Oakland_County_Michigan_1990-1998/link/576bbdd308aef2a864d4c598/download
Connecticut suicide prevention plan, page 44, at https://www.sprc.org/sites/default/files/Conn_Suicide-Prevention-Plan-2020.pdf
Thanks to Second Thoughts CT, especially leaders Cathy Ludlum and Stephen Mendelsohn, for your advocacy that made possible Connecticut’s disability-conscious suicide prevention plan!
