Whose Time Is It, Anyway? On Dying and Autonomy

My PCP's exact words were "Go live your life as much as you can, for as long as you can." Not a prescription. Not a program with an intake form and a caseworker checking whether I'm complying. A sentence handed to me, once, by a person whose job was to tell me the truth about my lungs, and then get out of the way and let me decide what to do with what's left of them. I've thought about that sentence more than almost anything else anyone has ever said to me, because underneath the plain words is a premise most systems refuse to grant a disabled or dying person: that the time remaining is mine to spend.

That premise is currently up for a public comment period that ends July 31. The Centers for Medicare and Medicaid Services is finalizing a rule that narrows who qualifies as "medically frail" — the exemption category that has, until now, protected people with terminal illness and chronic conditions from Medicaid work-reporting requirements. Disability advocates estimate the rule could strip something on the order of $880 billion in federal Medicaid spending over the next decade and put coverage at risk for more than 40 million people with disabilities. Litigation was filed June 29. The comment period keeps getting extended, which either means the government is listening, or means the government needed more time to figure out how to defend a rule this hard to defend. I don't know which. I suspect neither is really the point.

Here's the thing about a work requirement built around a narrowing definition of "medically frail": it doesn't ask whether you're sick. It asks whether you're sick in a way the form recognizes. Ambiguous exemptions are not a drafting oversight — ambiguity is a feature when the goal is to make the burden of proof someone else's problem. Every person who has ever had to fight an insurance denial, a disability determination, a special-education evaluation, knows exactly how this works: the system doesn't have to say no. It just has to make yes expensive enough, in time and paperwork and appeals, that a percentage of the people who qualify give up before they get there. That percentage is the actual policy. Everything else is the cover story.

I am autistic. I am dying. Both of those facts have, at different points in my life, been treated by some institution or another as evidence that I should be managed rather than trusted — that someone else, credentialed and well-meaning or not, should decide how I spend my capacity. The through-line in disability advocacy that actually means something to me isn't "we deserve sympathy." It's narrower and harder than that: we deserve to be the ones who decide. Not because we're inspirational. Because it's our life, our lungs, our nervous system, our clock, and a work-reporting rule that can't tell the difference between "too disabled to comply with paperwork" and "not disabled enough to be exempted from it" isn't rigor. It's a filter built to produce a number, and the number is the point.

My PCP handed me a sentence with no compliance requirement attached to it: go live your life as much as you can, for as long as you can. Forty million people are currently waiting to find out whether the federal government is willing to extend them the same courtesy, or whether "as much as you can" is about to come with a work log attached.