Tuesday, September 30, 2014

Background

As I write this, I am terrified. I have not slept well in months. At the end of the year, unless we can find a solution, my wife and I are going to be evicted from the only home I can remember living in. I am fifty five, and I’ve lived here since I was two. That would be heartbreaking enough, but at the moment, we have no place to go. I am legally blind, and probably autistic. I do not have a formal diagnosis stating I am on the autism spectrum, but at the time I was growing up, autism was not well understood, and my vision problems helped mask any other issues. I only came to realise I was probably autistic in 2010, but I am not entirely “self-diagnosed”. I know a clinical pyschologist who has worked with people on the spectrum for thirty years, and although he was intially skeptical, we have discussed my reasons for believing this, and he is now convinced I am on the spectrum myself. At my age, it is very difficult if not impossible to get a diagnosis. I’m not sure it would help in this situation anyway. And we just found out earlier this month that my wife is in immediate, urgent need of knee replacement surgery.

How did we get here? The full story is far too long, but I always had struggles, even growing up. While I was considered a genius, and could read and comprehend college textbooks by the fourth grade (something my teacher verified), I still couldn’t tie my shoes. There were so many things I did not understand or couldn’t do, which left me even more confused than everyone else. To make matters worse, I was overprotected to a degree even most overprotective parents would find extreme. When I hit eighteen, I was legally an adult, and my father considered I was ready to go out and get a job, but I suspect most ten year olds would have been more prepared for adulthood. I went to college, tried to make that work, and failed. In the process, I met a girl, and we got married. We moved in with my parents. At the time, I hoped that would be temporary.

Since even people with vision issues and no other obstacles find it difficult to support themselves, I had no trouble getting on SSI. For four years, I struggled to start a printing business. That failed. By then, I was so baffled by the “invisible net” which engulfed me any time I tried to do anything, I had no idea what to do. Most people just called me a failure. I feared they were right. Confusion, depression, and isolation all took their toll, and although I often tried to figure out how to get myself out of the mess I was in, it was fifteen years before I reached the point where I even had something else in mind to try. In part, that was because SSI is a sort of death trap. Unless you can navigate the draconian rules in order to get off it, you have to be able to leap off. My wife inherited a small amount of money, which threw us off, freeing me from the need to figure out how to avoid making our situation worse.

When I became a professional genealogist, I was good at the work, but I still struggled. My skills in dealing with clients weren’t great, and although I had never heard the term “executive function” at the time, the shortcomings in my own executive function made the tasks of scheduling and running the business far more difficult than others might have found them. Since I was trying to run it on a shoestring, I had practical limits hemming me in as well. For various reasons, that business failed, too. Then I stumbled on an opportunity to work for a “Web 2.0” company. I’d never spent much time thinking about a “regular job” because even without knowing what was “wrong” with me, I knew I had trouble dealing with people. Human society made little sense to me, and I was always stumbling over things everyone else seemed to take for granted which tripped me up. But this seemed ideal. I could work from home, I liked the service and the person I would be dealing with, and I’d be writing, which is the one thing I do best.

However, there were still problems. Although I’m good at writing, I find creative writing much easier than the dry kind other people usually pay you to do. For that and various other reasons, none of which were the fault of the people I was working with, I began to feel as if my mind was struggling in a pool of cooling molasses. It became harder and harder even to write, took me longer and longer to produce a single sentence. I was fighting to pull each word from my brain, and I’d often find I’d tugged out the wrong word, so I spent a lot of time going back and editing. So that job didn’t actually work out, as much as I’d hoped it would and wanted to make it work.

In 2010, several things happened. We’d run out of money to the point where I had to go back on SSI, my father’s mind really began deteriorating, and he suddenly made a will leaving his house and everything else to my three kids. I’d been reading productivity advice for years, and trying to figure out why I had the difficulties I did. That was also the year I connected the dots and realised I had always been autistic, but no one had ever suspected it. Given what was known about autism when I was younger, and my parents’ aversion to psychology and psychiatry, that’s not surprising. Then my father died in 2012. My kids wanted to sell the house, but we are only able to afford subsidised housing. When we tried to find a place to live, we found out that since the financial problems of 2008, it takes years to obtain subsidised housing, because there are just too many people who need it. So we applied, and waited.

In 2014, my kids decided to evict us. Although I might have contested the will, I had decided not to do so, for various reasons. It may or may not be too late to do that now, but doing so would be acrimonius enough I still hesitate. Such is the autistic mind. At the end of the year, if we haven’t found a place we can afford, we will be out. We are actually much better off than many people in our shoes. Our church is trying to help us, and there are friends we can stay with at least for a while if no better choice emerges. But it is still terrifying.

As much as I am afraid for myself, my wife, and our two cats, the fact there are actually many other people in more dire situations, while the official ways of getting help fall far short, bothers me even more. So I decided to create this blog to chronicle part of our ordeal (we’ve already been through an agonising legal process) and seek help not just for ourselves, but also for anyone else stuck in such a horrible position.

I have thought, since the threat of being tossed out with no place to go first came up, of trying to raise money online. True, there is no one who owes me a thing. However, I don’t have the power to compel anyone, and if other people can seek money for far less serious reasons, I don’t feel it’s unfair to put my request out there. So what’s holding me back? First, the fact that I’m on SSI. If such an effort were wildly successful, and we raised a million dollars, that wouldn’t be an issue. I might be off SSI, but we’d have enough to live on for a while. But if we only raised $3,000.01 (actually less, since we usually keep at least a few dollars in the bank) I would also be off SSI. And the amount of time it would take to reapply and get back on is longer than we could survive on $3,000.00, which is exactly why I spoke of draconian rules earlier. We’d be worse off. I have heard of something called a “disability trust”, which might (if I understand it correctly) let us raise a certain amount of money without running into this problem. But only those with friends or family who have enough cash to hire expensive lawyers to set such a thing up can take advantage of it. The very worst off can’t even try asking for help online. There are other reasons I hesitate to try this, but that is the first and biggest hurdle. Unless I can find a way around it, I can’t go forward. And that’s the best idea I have, by far.

If anyone reading this has questions, as I say, I’m eager to help everyone understand how some of their fellow human beings can get themselves caught in impossible, possibly deadly, traps. And if anyone would like to make suggestions, I’m happy to discuss that, too. The way forward looks so impossible, if I didn’t have my wife and my cats to worry about, I’d probably wander off into the forest and wait to freeze or starve. At least that would be more peaceful than what’s likely to happen otherwise, and perhaps I’d be more successful surviving on my own in the woods than I’ve been at anything else. But since that isn’t an option, I’m desperately looking for a path forward. So far, posting this appeal is the only step forward I’ve been able to identify that I can actually take.