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 I pore over story after story of people like Michael Hickson and Tinslee Lewis having treatment withdrawn, withheld, or threatened because of the pervasive view that it’s better to be dead than disabled.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.


Heather H. said...

This young woman has stated the truth, succinctly and bluntly. Let me add my own experiences as I live in Canada where MAID has been legal since 2016; the author is correct, with MAID legalized, it reinforces those who hold the belief that people with disabilities should end their lives and let the able-bodied have access to their healthcare dollars for treatment because the able-bodied person is a productive member of society and the disabled are nothing more than a drain on healthcare, taking up space as "useless eaters," a term George Orwell coined. Sadly, the dystopian nightmare that Canada is now is on par with the worlds in Animal Farm and 1984.

I know that sounds harsh, but I have been told that to my face by nurses and doctors trying to pressure me to take MAID. I have lived with Cerebral Palsy my entire 56 years and counting on this planet. It is taking a physical toll as I get older, and I have lost a lot of function and live at a constant 8-9/10 on the pain scale with chronic fatigue. Nurses have said to me "if I were in your place, I would take MAID as you aren't living, you are existing." When I refuse, I am told that I am being "selfish."

Let me tell you about my unproductive life where I am "just existing." I graduated from high school with honours in 1986, college with a diploma in 1990 and worked for 22+ years in healthcare as a unit clerk in community and outpatient clinics. I medically retired in 2012, and began to write. Last year I published my first novel, and I am currently working on a second novel and a book of poetry.

Do not tell me I am an unproductive member of society! I am a woman who happens to live with a disability... it DOES NOT define who I am. Neither does any doctor, nurse or heath care provider of any sort have the right to try and pressure me to sign a DNR or accept MAID because my disability makes them uncomfortable. I am a human being with the same feelings as anyone else. My life has worth.

God put me in this world and HE is the only One who decides when I return to Him. Anyone forcing MAID on me has committed murder (for future reference, should our society devolve any farther).

Madge Weber said...

Hello Heather. Thank you for sharing your story of courage and committment. I had a brother-in-law who lived with MS for more than fifty years. I cannot remember him ever being subjected to the ill attitudes of the health care culture we are living in today. He was an upbeat person who was so talented in music, choir, dance and so much more. I have fond memories of him, while being confined to a wheelchair already, we would have him on the dance floor too, with the rest of us who were freely moving about, so that we could hold his hands and all would sing together. Tears and hugs followed. Of course, there were times when he suffered greatly, in body, mind and spirit. He knew he was loved, respected, and valued. My God, what has happened?
Heather, I am happy to meet you, and I am so sorry to hear of the many discomforts you have to endure. May there be abundant days filled with sunshine for you, as you navigate on your journey with peace and love.