You might know it as assisted suicide. In Illinois, it’s called Medical Aid in Dying, or MAID. It allows adults with six or fewer months left to live to request and give themselves medication to end their own lives.
SEBASTIAN NALLS: This may provide relief for somebody at the end of their life, but it puts a substantial amount of people at risk.
That’s Sebastian Nalls. He’s a policy analyst for the disability rights organization Access Living. He and many others in the community say legalizing assisted suicide will systemically fail people with disabilities.
Imagine someone with chronic pain who has exhausted almost every treatment option. Then, they’re told by their palliative team that the next one may be more painful than it’s worth. Or that insurance won’t cover it. What would they do if presented with the choice to die?
NALLS: Is that really a choice? Or has that choice already been made for you?
Then, there’s the message this bill sends to people with disabilities. T.J. Gordon is the co-founder of the Chicagoland Disabled People of Color Coalition, or DPOCC. The group is especially vocal about those with disabilities who also face racial discrimination.
Gordon says the law would reinforce the ableist idea that a disabled life isn’t worth living. He says it tells disabled people that:
T.J. GORDON: Our lives suck. Our lives are nothing. To make your lives better for yourself and others, you now have the option to put yourself out of misery.
Gordon added that MAID diverts money and urgency away from providing adequate health care in the first place.
GORDON: Energy should be going towards ensuring that everyone has equity in their care. We should fight for that, not for the right to kill just because it’s too hard.
But over in Oak Park, Tiffany Johnson is comfortable with all things death. That’s why she advocated for the bill that she says would give people more control over the end of their lives. At first glance, you wouldn’t know her dining room is full of urns.
TIFFANY JOHNSON: So, in the corner, that circle is one of the urns I’ve designed. I have another — oh, in that Tupperware are some other urns that are discs.
But that’s typical for Johnson, who cares for dying individuals and their families.
JOHNSON: We’ve medicalized death, so we’re staying alive longer than our bodies, naturally as a whole, are really meant to. We have more choice and more power, that we don’t even know we have, because we’ve put our hands in medicine.
Johnson said that MAID will especially empower patients with terminal illnesses who don’t want to continue aggressive medical treatments. Instead of suffering for an indeterminate amount of time, they can choose to die on their own terms.
In response to the concerns from disability advocates, Johnson says coerced cases of MAID are the exception, not the rule. She referenced a statistic from the nonprofit group “Death with Dignity” that says a third of people who get the lethal medication don’t even end up taking it.
JOHNSON: I think my concern is to exclude individuals who are well informed and who have support and access and are dying from an extraordinarily painful condition.
But that’s not a good enough answer for Nalls of Access Living. He cited a 2021 study from the National Institute of Health.
NALLS: Even if we go and say that everyone has access to the highest quality of care that they can possibly have, we still have the underlying issue that 82% of physicians believe people with disabilities have a lower quality of life.
Right now, Acess Living is pushing a new bill that will add stricter protections to MAID. Safeguards like mandatory mental health evaluations and a referral to a neutral third party when a patient’s choice is influenced by money worries.
NALLS: All of that is to provide avenues of support for people, to make sure that, again, that we have the most safe bill possible, because this is, it’s a matter of life and death.
GORDON: We fighting against eugenics, in a nutshell. And that’s what MAID is, is a step closer to eugenics.
Gordon says his disability coalition will be fighting for the new bill, too.
For WNUR News, I’m Georgia Kerrigan.