Friday, November 7, 2014

The Obstacles

There are various obstacles standing in the way of doing anything to help myself. A careful reader might even notice one, in the fact that more than a month passed between my first post and my second. In part, that is due to poor executive function. Just doing the basic things I have to get done each day can be a struggle, and fitting in anything new or difficult is even harder. As I already mentioned, writing on a topic like this is difficult, and more so when no one is reading what I’ve written. And I worry about what to say, how to phrase it so that I’m truthful - and not just factual - and a thousand other details. All those things hold me back, even when I am this desperate.

In addition, various forms of public assistance have their own rules, and most of those rules make it difficult or impossible for anyone who does not pursue an entirely normal path to even imagine getting off that assistance without running into worse trouble. I would be overjoyed to escape the need for such assistance - but it is horribly easy to do something which means I no longer qualify for help while gaining so little that I’m much worse off than when I started. So any attempt to make money is frozen unless I can be sure it will make enough to keep from landing me in an even worse position.

I did have one idea, where I thought instead of just asking for help, I could publish some of my writing and ask for donations from those who thought I had given them something worthwhile. Why haven’t I gone through with that? Aside from my fear of making my situation worse, I can’t make such an appeal. My PayPal account is frozen. They wanted me to verify my identity, which was difficult since I am not in any driver’s license database (I am, after all, legally blind) and have never had credit. So instead they wanted me to submit a number of documents - and the name on each had to be exactly the same. Now, I was for a time a professional genealogist, even if I never made much money at it, and if I had ever found too many records for one person that agreed so exactly, I’d have concluded that identity was faked. A real person just does not have records that match up perfectly. They have exactly the opposite. So to prove I am not a fake, they want me to behave like one. For most of you, that might not be a problem. For an autistic person... my account has been frozen for about four years now.

In addition, I don’t have the knowledge to put together an e-book quickly, or the funds to produce a self published printed book (since Adobe has an absolute monopoly on the software required to produce the file for printing). And with all the stress and anxiety, I would struggle to put anything together. I might barely manage a collection of poems or short stories, but even that might take me longer than I have.

Years of living with furniture designed for people who can see normally, which forces me to bend further over to see things, has left me with a neck which often pains me, making working on anything in too much of a hurry even more difficult. And all the stress and anxiety I am under doesn’t help, either. There may even be other obstacles to getting out of this trap, but those are the biggest and most obvious ones.

Thursday, November 6, 2014

My Plea

This seems like such a hopeless effort. I do not expect anyone to do anything for me. Those people who might owe me something aren’t the ones who would pay their debts, and those who might be willing to help owe me nothing. But if you are willing to help a stranger, I ask first that you read these posts. Comment if you have the time and can think of something to say. It is very hard to write and post in a void, when no one is reading, or at least there is no sign of it. Any encouragement at all will make my task easier. And share the link with anyone you can think of who might be interested. There is no point to this is only a handful of people read it.

The most important thing I want to accomplish is to start a discussion on all those people who need help and have no way of getting it. There are many of us, people who fall through the cracks. Even if no one is able to - or chooses to - help me, or even if I do find help, all those other, silent people need help, too. I am uncomfortable talking about who “deserves” help. Do I deserve it? Perhaps not. But there are at least some people who do, and they should be able to get it without so much misery and stress and suffering. The solution is not political. Neither party has ever shown any sign of doing anything which will do anything other than slap a bandaid over the wound to hide it from sight. Or perhaps it is partly political, but that is not the whole answer. It can’t be. I’ll discuss how I came to be in this position, the obstacles in my way, and some of the reasons I am convinced the solution must be more than political in later posts. Your questions will be helpful to me in deciding what you most need to know to carry on the discussion.

In spite of my own terror and misery, I am serious about the discussion being the most important part of this struggle. It is so important that I’m about to ask you something which terrifies me even more than my own situation. If you know of a journalist who might be interested in covering my plight as a story, send this on to them. I am a private person - I’m autistic. But more people need to understand how many people suffer silently, right in our own country, while “the government” is assumed to be preventing such things. Do we suffer as much as the people in some of the most poverty or war stricken areas? Probably not. But every person matters.

Since I am human, I am also hoping that someone might have an idea to help me, a solution that is not a complete disaster. If you have suggestions, those are welcome, too. Even if they’re something I have already tried which has failed, or if there is a reason they will not work, all my readers will be able to see more of the process and how it works, or doesn’t work. In a discussion, nothing is wasted. And with enough attention, someone may read this who does have an answer. If that doesn’t happen, it will serve as one more illustration of how hard it can be to get help.

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.