(Not) Getting Disability

I’ve been trying to get disability for a few years now. I cannot seem to hold down a job for more than a few months, and it all boils down to my autism. Anything remotely social, and everyone turns against me sooner or later. In addition, I have problems with my hips and feet that prevent me from doing physical labor.  So you would think I would be a shoo-in.

After being turned down, then contesting it and being turned down again, I went before a judge–and got turned down again. The good thing about going before a judge is that I was able to get details as to why I got turned down.

It turns out that you apparently cannot have pain caused by doing physical things, but can only have pain that is constant in order to get disability for pain. If you walk in without a walker, a wheelchair, or a cane, forget it.

It also turns out that my intelligence and Ph.D. count against me. While the judge did determine that I could not do any job that would require my education, that education still counted against me. Also, because I can apparently sit and read, or sit and watch T.V., or sit and play video games (I’m not sure where that came from, since I don’t play many video games, and I don’t play often, but it was listed), I’m capable of “paying attention.” Never mind the details of that. I have to read with a pen and paper nearby in order to write things down as they occur to me as I read. It’s not uninterrupted reading. To do the best reading, I have to go someplace with a little background noise to create enough of a distraction that I don’t distract myself. T.V. comes with commercials, during which time I’m up and doing something, or I’m reading.

The judge also did not take into consideration the fact that I was able to get a Ph.D. because I was focusing on my obsession at the time. Of course autistics do well with their obsessions. The problem is that people think, “If you can focus on your obsessions, you can focus on other things.” Unfortunately, that’s simply not at all how it works.

When I work, I get distracted all the time. I have to have paper and pen close by in order to write things down so that I can get it out of my head, or I obsess over it and can’t get my work done. The problem is that when people see that, they think I’m “goofing off.” But it’s a necessary part of my process.

There was also the issue of my memory. My exceptional long-term memory counted against me, and the judge had mixed information from the neurologist and two psychologists who diagnosed me, so he basically determined I don’t have issues with short term memory. Oddly, while the neurologist explicitly told us that I have short term memory amnesia, this didn’t end up in my official diagnosis. If you’re not autistic, having terrible short term memory and excellent long term memory makes no sense. People don’t really differentiate between the two. But having bad short term memory affects executive function and planning and how one learns.

Also, being married, having kids, helping take care of the kids, cooking, and shopping on my own all counted against me. Yes, my ability to spend a half hour shopping in a store, where I can ignore most of the people there while concentrating on finding the food I need, is apparently equivalent to spending 8 hours actively interacting with people. Also, feeding my kids when I eat and otherwise letting them play and watch T.V. when I’m at home is equally equivalent to working a full time job. Being married means I have someone who helps me–and yet, this somehow counts against me.

The judge also counted against me that I didn’t do any followup therapy or medical diagnoses, or get medication for my anxiety. Never mind that I have a hard time getting myself to make appointments, etc. precisely because of my anxiety. I hate going to the doctor, I hate taking medication, and it all makes me extremely anxious. But he didn’t ask me why I didn’t do any followup, so he doesn’t know these things. He just assumes that because he always has insurance, I can pay for everything all the time. And he just assumes that because he can make appointments, it’s easy for me to do so. It’s not. I went several years with a cataract in my left eye before I was able to get myself to make the appointment to get the surgery.

In the end, the judge’s conclusion was that I was capable of doing either assembly work or packaging. When I asked whether or not he would hire me for such a job given my resume, he said that wasn’t relevant. But of course, we all know what the answer to that is. The only places where I could theoretically work would never hire me with my resume. If I don’t put my full education on my application, I lied on my application, and they could fire me. If I do put my full education on my application, they won’t hire me in the first place. So I’m stuck between my autism and my education.

The good news is that I am currently working. It requires me to stand for at least 6 hours a day, and at least half the time I’m surrounded by a lot of people. And it doesn’t pay much, though it’s better than minimum wage, and they have great insurance. My feet are in constant pain, and severe pain periodically shoots through my hips, but I don’t have a choice, so I have to just suffer.

I suffer because nobody wants to believe me. They have no experience of my world, and so don’t really believe such a world exists. I’m not sure how to convince them it does.

The Uncanny Valley

There is a phenomenon familiar to those who make animated films and robots known as “the uncanny valley.” We are generally comfortable with animation that looks like the old Loony Toons cartoons, and we are comfortable with much of the extremely life-like animation we are starting to see in contemporary movies, but there is a place in between where people feel sort of creeped-out by the fact that the animation is almost realistic, but not quite. This in between place is the uncanny valley.

I have often wondered why people have such a negative reaction to me and many verbal autistics. With my education, I shouldn’t have such a hard time finding and keeping a job. In short interactions, I can appear non-autistic, I can be quite funny, maybe even a bit charming. But I seem to wear on people. I don’t suffer fools lightly, and my bluntness can certainly make people not like me. I generally try to avoid certain topics, especially at work, but even when I do my best to avoid topics that set me off on a rant, or on a lecture, and even when I’m doing my best to be funny and charming, I still find people become increasingly standoffish over time.

I believe what is happening is that people are feeling the uncanny valley when they experience my behaviors over the long term. That is what is making people uncomfortable and wanting to avoid me. There are days when I just can’t pretend, and I’m sure that on those days, the uncanny valley is being felt by others to a higher degree.

The problem, in other words, is that I’m human, but not quite human enough.

I suspect, too, that we autistics feel much the same way toward neurotypicals. In my case, though, while I felt that way much of my life, I stopped feeling that way once I realized I was autistic myself. Realizing that neurotypicals can’t help their behaviors, and no longer wishing I could fix them all and make them better, more rational, more creative thinkers, helped me realize that they were all simply different, not worse. It was a lesson in humility, to be sure.

In many ways, it’s easier for people to simply look to the non-verbal autistics and feel sorry for them and want to cure autism. They are foreign enough that it’s easy to not feel fully uncomfortable–or, perhaps, to feel sufficiently uncomfortable that wanting to get rid of them all is itself a comfortable way of thinking.

Autism is a different way of being in the world and a different way of thinking. In many people, it can be combined with other issues to become disabling. We all know that. But many of the issues people like my son and me (who are diagnosed with autism I and II, respectively) face involve the way we’re treated by neurotypicals, and the environments into which we are thrown. With the right environment, many of us aren’t disabled at all. I mean, we don’t call a fish on land disabled because it cannot walk. It’s simply not in the right environment. Even mudskippers cannot move around on land even as well as a snake. It would be absurd to call a mudskipper a disabled cheetah.

Image result for mudskipper

Perhaps if we understand that we are all feeling the uncanny valley when we are interacting with neurodivergent people, we can come to a better understanding of each other. We can come to respect those who experience the world in different ways, perhaps even come to appreciate the fact that there are people in the world who are different from ourselves, who think differently, who experience things differently, and therefore will necessarily make different kinds of contributions to the world than we could.