I am going to start sort of in the middle: the precipitating event. I’ll fill in the background later. This is going to be rather incoherent, but that’s the way the neurotypical world is, so I suppose it’s appropriate that my account of it be so as well.
My sister got denied in her appeal for Social Security Disability Insurance (SSDI).
And the judge’s decision was ludicrous to anyone who knows anything about Asperger syndrome. (Yeah, I know that name is controversial. I have my reasons for preferring it, and as an Aspie myself, I’m entitled to make the choice. I’ll cover the reasons when I get to the background.) Everything he (the judge) listed as evidence that my sister doesn’t have Asperger’s was in fact evidence that she did!
She held a job and then went to college? Sure she did: part time for both because she couldn’t cope with full time. She never did either full time at any point in her adult life. And when she held a job, it was as nonsocial as possible. For most of her working life, she telecommuted. She’s never done anything social since she gave up the anime club back in the early nineties. She once hid in a locked server room so that her co-workers couldn’t pressure her to join an office lunch. The key to the room was provided on a limited basis; as a techie, she qualified and they didn’t.
She clearly is capable of coherent thought? Sure she is. Coherence of thought isn’t a problem in Aspies. Social cues and interaction, nonverbal communication (including facial expressions, voice tones, body language), slowness of processing (particularly social and emotional stuff), inability to cope with a “fast-paced, dynamic environment,” that is the kind of stuff that indicates an Aspie in the neurotypical midst.
Her doctors say that she is (a) autistic and (b) depressed, but there is no evidence of either? As reputable physicians, their statements are evidence, as is the evidence they cite in their reports as a basis for those statements. And since he clearly doesn’t know what he’s looking for, he’d do better to take their word for it than rely on himself.
But her lawyers say it doesn’t matter that he doesn’t know a damn thing about the condition of which he’s judging the existence or nonexistence. The Social Security Administration has blessed him to make these decisions, so we’re not allowed to question his competence. It also doesn’t matter that my sister would not be able to make it through an interview at all, let alone successfully enough to get a job. It doesn’t matter that the whole process is biased against people who can’t show up to plead their case because—guess what?—we don’t function well at anything real time.
Everything that should matter doesn’t.
The case now will be passed to a bunch of lawyers who will judge if the law was correctly applied, not whether the judge was an ignorant loon who should’ve bothered to learn a few things before he started pontificating from on high. So long as the judge correctly applied the law, it doesn’t matter that his ruling is a sterling example of ignorance regarding autism and what it is and what it is not. We’ve got ten business days to submit more evidence (and we can’t get to an autism expert in that timeframe and we’re told that probably wouldn’t help even if we could), and then in a year the bunch of lawyers will almost certainly tell my sister that she’s out of luck until she’s sixty-seven. Like she will make it to sixty at this rate. The stress is unquestionably destroying her.
It’s her last shot. To apply again, she has to go back to work first. She hasn’t worked in over a decade now because she was going to school and then taking care of me and then falling apart while taking care of me. After the past seven and a half years, a period of at best low horror for both of us, there’s just no way. Absolutely none.
Attempting to function in the neurotypical world, a world made by and for people entirely not like us, is much more stressful than it is for neurotypicals, for whom it is made and by whom it is constantly re-made in manners that shut us out. I grant that there is no malice aforethought in the shutting us out, but that doesn’t change the effect. After holding part-time jobs while in school since I was fifteen and then full time for twenty-five years thereafter, I collapsed when I was forty-eight. That’s why my sister’s been taking care of me. And that’s why she cracked at a slightly earlier age than I did. She’s now fifty-one, but she hasn’t been really functional for years and it’s getting worse all the time.
Part of my collapse was physical issues, but I was almost relieved they happened. Going out and about is hard on autistics. Just going outside of our home is at best unpleasant: we get assaulted by all our neurotypical neighbors’ attempts to interact with us. Yes, we know they think they’re being friendly. They’re not. Assault is not too strong a word. If we try to make that clear to them, however, they all agree that we are the ones being bad neighbors.
So when I couldn’t walk far enough to do any errands (I’ve never been able to drive and we don’t have a car), my sister had to do it. People have been telling me for years that my sister is a leech on my SSDI benefits, but what they don’t get is that it’s the reverse. Even if you don’t agree with socialism—I do, but even if you don’t—I’m the one who is a parasite on her. I’m using her lack of income to force her to go out and do all the outside errands of our household.
Granted, I have no alternative, but’s so very hard on her. From infancy to her mid twenties, I never her saw her cry. One event then made her cry, and again I didn’t see her do it for nearly twenty-five years more. Then slowly but surely, she became less and less able to cope with the errands. First, she had to give up going to food pantries. I used to go to them, and really, folks, they’re an autistic’s vision of hell: loud, packed with humans, with those humans and various objects whizzing around unpredictably. And oh, yes, the humans use the line as a captive audience. There they are, shouting in her face about whatever they want an audience for, and she can’t escape because we need food. She came home in tears several times before we mutually called a halt.
Trips to the grocery store were rough, but she managed by going before 7 a.m. on a weekday. But with the COVID-19 lockdown, every open time at the grocery store was packed. It was the pantry all over again, only this time with distraught and frightened people fighting over a few supplies. And I’m sorry, but Instacart is awfully expensive as well as just plain awful. And she and I haven’t forgotten that Walmart nearly single-handedly destroyed the American economy, even if everyone else seems to have. We are certainly not going to shop through them! Poverty has forced us to give up a lot of our values, but that makes us all the more determined to hold onto the few we’ve managed to continue to live.
All she’s asking is that they essentially allow her to retire early. That’s it. I got that because I determined early in life that my desperation was never going to be quiet and so it never was. I am documented all the way back to the Bad Old Days (euphemistically known as “our childhood”). Suicide attempt; big scenes with our bio-mom, my teachers, my employers, authority figures of many and various sorts; psychoactives all the way back to the mid eighties—check, for all of ’em! My sister figured (and my example may have helped her reach this conclusion) it would be easier to just fly under the radar and try to pass unnoticed. If people didn’t notice her, they wouldn’t bother her.
And she had this thing about being labeled “disabled.” Me, I figured it is bogus at its basis—I’m only “dis” because I live in a world in which I am an aberration rather than the rule—and damn it, I’ve more than earned the few advantages it brings me. It’s not like they even compensate for the horror of sticking out among a herd species. (No, not pack species, herd species. We’ll get into that later, too!) But my sister felt differently and avoided getting so labeled.
And now that she can’t hide it anymore and has to own it and needs to ask the rest of the world to finally give her a little slack, and they won’t do it. They accuse her of being lazy and greedy (which is another angry laugh—she’s always lived very happily on the very little her part-time work brought her and I never understood how!). She has literally (and I do know the meaning of that word) tried every other option, and SSDI is all that is left.
As I write this, she’s hiding up in her room. She’s come down a couple times to eat, but she just keeps staying up there. Her room isn’t dog safe so her dogs can’t go in there, so they both are getting depressed themselves for lack of mommy time. I do what I can, but my own dog is a jealous creature who often will start yapping if I just speak to the others. And while her dogs both like me, the whole time I’m trying to give them a cuddle and get mine to be quiet, they’re letting me know that I am not Mommy and that they expect me to get Mommy to come out and cuddle them already.
I don’t know why I can’t believe all this but I can’t. I mean, it took me years to figure out that neurotypicals view the world very oddly and seem adverse to basic rationality, but I honestly can’t believe it’s been taken to this extreme. Judges making rulings on topics they have no knowledge of; systems made to exclude the very people who need them;dooming people to death by the slow tortures of hunger, stress, and illness . . .
It boggles the mind. Even the Nazis, who didn’t want our kind anymore than modern neurotypicals do, at least created gas chambers for us and put us out of their misery quickly. Yes, the gas chambers were created and used to wipe out of Germany psychological and developmental “inferiors” long before it occurred to the Nazis to use them for their “Final Solution to the Jewish Problem.” No, I’m not kidding. The mentally ill, which for them included those with developmental disabilities such as autism, went first. And only a few family members protested. Many of those people’s relatives were only too happy to be relieved of the responsibility.
Sorry for the digression, but I never thought I’d think of Nazis as merciful, but . . . now I really have to wonder. My sister and I were abused children. Our disability didn’t officially exist until we were in our mid-to-late twenties so we got none of the help and training that autistic kids get today. By the time we were diagnosed (late thirties for me and late forties for her), it was too late for us to learn such things. We worked hard all our lives in a system that just tried to pound us into their idea of what people should be, but we were contributing citizens and taxpayers for as long as we could manage it. And now it looks like my sister and I are doomed to further decompensate until we end up on the streets and dead.
What kind of basic decency is that?