An Open Letter To U.S. Taxpayers
Everyone over the past several days has been lauding this McSweeney’s piece by Anaïs Godard, an open letter to Wormwood in defense of the author’s five-year-old autistic daughter. McSweeney’s primarily is a humor publication, which perhaps in part is why the piece has gotten so much traction. Its flaw is that Godard tries to have it both ways.
“Not all autistic people will redesign physics,” she writes “They don’t need to. Their worth isn’t tied to invention, it’s intrinsic.” This is, or rather should be, incontrovertible. However, she also spends a great deal of time suggesting that “the world you move through was built by people who thought sideways”, including a short list at the end of historical figures she’s deemed retroactively to be autistic who contributed things valued by the normative world.
She also makes sure to note, despite the aside about intrinsic worth, that her daughter exhibits empathy in situations where adults wouldn’t yet have even noticed something was awry. Her daughter, it’s understood, is actively contributing.
I need fewer pieces like this and more pieces by people saying, “You’ll have to pay for my kid forever, and that’s okay.”
I need these other pieces because I’m that kid, the one you’ll have to pay for forever. The one my parents spent decades paying for, the one that my sole remaining parent pays for, the one that Medicaid, and SNAP, and LIHEAP are paying for until Mine Furor’s hangers-on in Congress take them away. (Project 2025, as noted by The Twilight Zone, is a cookbook.) By the end of this year I might very well lose all of those last three, and they can’t be made up for by that sole remaining parent—who themselves, eventually, will be lost to inevitability.
Then the world will lose me.
Specifically at issue are the proposed changes to how being an Able-Bodied Adult Without Dependents (ABAWD). Currently, there are no ABAWD work requirements for Medicaid, but there are such requirements for SNAP—it’s just that you’re exempt once you turn fifty-five as I did last October. If the law changes as a result of the Project 2025 Cookbook, both programs will have ABAWD work requirements of twenty hours per week until you’re sixty-five.
The problem for me on this count is that my current (and new) primary care physician thinks my fatigue is a result of a lack of strength training, whereas I know from the lived experience of the past decade that I’ve had at least two fundamental shifts downward in my baseline capacity. Despite what the Cookbook’s aficionados would have you believe, despite my only confirmed disability of note being autism I cannot, in fact, push a broom four hours a day. I can’t even do data entry for four hours a day.
(I know that latter because there are aspects to my blog restoration project which amount to data entry or similar scutwork, and I cannot even do that, for a thing that matters to me personally, for four hours straight even for just one day. Not to mention I once tried to regularly take research surveys every day just to make a few extra dollars for things like coffee, and I couldn’t do that every single day, either.)
The only way for me to be exempt from work requirements would be to be deemed “medically unfit for work”. It’s unlikely that my doctor would deem me as such. My therapist likely would, but it’s equally unlikely that certification from a therapist is something for which the Cookbook’s aficionados will account or something they will accept.
(What about Social Security Disability Insurance and/or Supplemental Security Income? Funny you should ask.)
As it stands now, I’m engaged in catastrophic scripting for how I’ll need an appointment with my doctor just to write out a schedule of the safest way to wean myself off of all my medications. I don’t know who to make an appointment with in order to get a schedule for weaning myself off food.
Everyday life the past several weeks mostly has remained steadily along that middle path where I mark my State of Mind at the end of the day as Neutral, with the occasional Slightly Pleasant or Slightly Unpleasant. Any real deviation from this in either direction—yes, even to Pleasant or above—is dysregulatory, so being consistently mid in fact is right where I need to be.
That middle path, however, is entirely dependent upon the fact that I am now partially (and eventually entirely) dependent upon you to survive.
Somewhat against what Godard says, I am a burden, it’s just that Godard’s notion of intrinsic value is supposed to mean I’m one worth carrying.
I am entirely dependent upon you to survive.
That’s supposed to be okay. I need more people writing articles saying so.
You are all that stands between me and dissolution.
You are all I have.