Jules Good: Disabled need help living, not help dying

[Jules Good’s op-ed below was published Feb. 27th in the New Hampshire Union Leader.]

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

Disabled need help living, not help dying

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 I pore over story after story of people like Michael Hickson and Tinslee Lewis having treatment withdrawn, withheld, or threatened because of the pervasive view that it’s better to be dead than disabled.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

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