Last month, I laid out in some detail over the course of three posts the latest experience I was having of the Social Security Administration in the ongoing post-diagnosis process of trying to obtain disability benefits before my familial financial support eventually dies someday and my cat and I go live on a downtown St. Johns sidewalk somewhere.

The day I’d written that second post, I’d challenged myself to draft a version of events to submit as a commentary to The Oregonian, if I could hit their target or 500 to 600 words given that the version of the story I’d already written here, in total, was well beyond that.

Over the decades, I’ve had a pretty good track record getting both letters and commentaries into whatever was my local paper at the time. Alas, my streak ends here.

It’s been almost three weeks, and the paper generally informs people that if they’re going to use a submission you’ll hear from them within two. What follows, then, is my commentary to The Oregonian, which came in at precisely 600 words. I’ll come back after with the latest update.

Administrating Us To Death

In mid-September, I spent two days trying to find out from the Social Security Administration whatever happened with the Request for Reconsideration I’d filed back in March, responding to a non-medical denial of my disability application.

On that first day, I spent half an hour on the phone with the main SSA number only to be told at the end that I’d need to call the local office.

The next day, I spent half an hour on two different attempts because while the ancient automated system tells you that during busy times you might be on hold for up to fifteen minutes, what that actually means is that if it hasn’t connected you within fifteen minutes the system simply says goodbye and hangs up on you.

After taking a break to manage my own self-regulation, I tried a third time. Inspiringly, within ten minutes I was talking to an actual human being on the other side of the line.

Disastrously, the local agent confirmed the worst, and exactly what I’d been catastrophizing over for days: at some point very shortly after I filed that Request for Reconsideration, the agency simply dismissed it, without sending any notice or making any attempt at communication, depriving me of my right to appeal.

What’s more, the local agent couldn’t seem to find any record of my disability application at all. An earlier one from 2019 appeared to be right at her fingertips. This one? Gone.

There’s a term of art for how systems like Social Security are designed specifically to discourage and exhaust people to the point of giving up, thereby easing both staffing and financial demands upon that system: it’s called “administrative burden”. Ironically, the seminal work on this which takes the phrase as its title cites the Social Security Administration as an example of reducing this burden. Imagine.

The local agent laid much of the blame for the situation at the feet of their online filing system. It’s important here to note that literally the first two minutes of their telephone system is a recording explaining how much easier it would be to just go online to do what you needed to do. Again: ironic.

After we’d set up a telephone appointment for me in the coming weeks at which I’d have to start all over again from scratch, the local agent said that if I wasn’t feeling up to it I could cancel or simply not answer the phone—although they discourage the latter. Given that their own telephone system hangs up on people after fifteen minutes, I noted for her the irony (yes, again) of that position.

The work I put into the application itself, even before having to file the Request for Reconsideration, was difficult and draining, and that was despite doing my best to space it out over a week or so to make it easier on myself. All of that work was for nothing. I did everything right, and I’m being made to start over again from the beginning. Worse: to do that in a format that debilitates me and my autistic nervous system. I filed online specifically because I could take my time and be clear and concise and complete, all without degrading my own mental health.

I’d like everyone—especially you politicians, physicians, and psychologists—who wonder why so many autistic adults think about simply not living anymore, to understand that this is why. It’s not the autism. It’s the systems you’ve built.

It’s the making us feel like we are the administrative burden, to be disposed with as quickly, efficiently, and quietly as possible.

Here, then, is where things stand today.

After learning about the likely administrative tool used both to disapprove my unfinished application and to dispense with the Request for Reconsideration without notice, as detailed in my third post on the matter last month, I decided not to start all over from scratch with the scheduled October telephone appointment.

Instead, I sat down and wrote an eight-page letter detailing the timeline of the agency’s misuse of res judicata. Then, I called the local office to see if I could find out one thing I’d forgotten to ask in the prior discussions: the date on which they’d summarily but silently dispensed with my RFR.

What I was seeking to do was simple, yet also difficult. If I could get that date, I was going to act as if they’d sent me a Notice of Reconsideration with that date on it, and I was going to file to request a hearing.

That call last week yielded the answer: the agency summarily dispensed with my RFR on June 30, 2023. Three and a half months after I submitted it, which is right in the expected timeframe.

I’ve cancelled the October appointment, and I’ve submitted a request for a hearing before an administrative law judge. In it, I detailed the timeline and apparent misapplication of res judicata. During the documents upload step, I used the provided drop-down to label this document as being my “good cause for late filing”.

In the online form itself—which, I hasten to add to the record of continuing ironies, timed out on me several times, forcing me to start all over again—I made sure to note that I had not, in fact, received any such Notice of Reconsideration, lest they take my representations to the contrary to be lies rather than an attempt to correct their own missteps of February and March.

Once again, there’s nothing left to do but wait. It could be years, or even a decade, but this is a race of waitings—between our slow-moving apparatus of determining with fatal finality whether or not I am surplus and so not worth the effort, and the steady, encroaching inevitability of losing the only financial support I currently have.

Place your bets.