When I went out to pick up my printing today, I saw that I had mail from Health and Welfare. I opened it with the trepidation I’ve long since come to experience as normal.
Let me side-bar for a moment on that. I’ve been on benefits for 20 years now, minus a few years when I lost benefits over paperwork issues (How is it right to require a person to go to the bank to pay $300 to obtain paperwork required to keep their $500/month benefits? How is it right for the bank to refuse to give someone on government benefits that paperwork for free or reduced cost?)
One of the effects of being on benefits is that every letter from the government is viewed with dread. I’m not exaggerating when I use the word “dread.” Have you ever experienced true dread? Where it feels like your stomach has dropped to your feet and the world around you sinks into molasses as you can only focus on one pinpoint of reality? The first time I remember feeling that way about a piece of mail was the day I opened the letter that told me I had cancer. Since being on government benefits and having them taken away and re-instated, I get that same feeling about government mail . . . except I get to experience the sinking feeling of doom crushing in on me before I’ve even opened the envelope now.
So, back to today’s piece of mail. When I open these government pieces of mail, I either sink farther (as with the recent royalties mail) or my feeling of dread is neutralized (as with the majority of government mail I open) or my feeling is a little lighter after reading. Today’s mail was the last sort. It was sent to tell me that my food stamp amount is being raised by $30. What that means is that, ceterus paribus (all else being held equal — that is, if I lose this appeal (and if that happens, I will re-appeal or go before a judge or whatever it is I am supposed to do next to prove that I have earned what I have earned)), I am now breaking even on the book.
This is the nature of government benefits — think of it as water. The government has drawn a water line (somewhere a bit below the poverty threshold) and declared that this is the height to which the water should reach and no higher. I lose some social security, I gain some food stamps. I gain some food stamps, I lose some social security. It’s all an ongoing process of filtering the information over and over again to keep the water level at the same height. When something changes in my life situation, the government letters come flooding in. Because every time one agency tweaks something, the other agencies respond. And those responses keep echoing back and forth until the water settles.
Did you know that a person on SSI who applies for and receives federal benefits such as TANF (Temporary Assistance for Needy Families) loses all that money on their SSI? It’s part of the rules: get $200 of TANF, lose $200 on the SSI check two months later. So if a disabled person’s spouse loses their job, they have to be careful what assistance they apply for while trying to get back on their feet or they may cause more harm than good to the household income.
Whether intentional or not, this is a training ground for the disabled. The lesson they teach is: don’t ask for more help. If you get more help, we will take help away from you. The water level has to stay only this high, no matter what. People ask why those who live on government benefits lose initiative and become docile and content to just live on what they’re given and never try to make more of their life. This is the answer: the water level must be maintained.
When I first applied for disability, I had a hard time talking myself into it. I wasn’t sure I “deserved” it. But I was living on the street and eating out of the trash and had worked job after job after job but couldn’t keep hold of any of them. I decided I would apply and be impeccable about telling the truth and if the government decided I “deserved” it, I wouldn’t feel guilty about it. I was expecting to get turned down. “Everyone” gets turned down the first time they apply. I was shocked when I was accepted. And the decision only took a couple of months. My back-check (they start payments from the moment you apply, not the moment you are awarded) was tiny compared to everyone I knew who had gotten back checks representing months or even more than a year of benefits for all that time they had been appealing and fighting the system. I barely had enough back check to pay the deposit to get into an apartment.
Which was a mixed blessing. I no longer had to feel guilty about whether I “deserved” disability benefits or not. The government apparently considered me an open-and-shut case. But it really lowered my sights for a long time, getting that “USDA Approved” stamp on my inability to function in the society in which I live. Still, I told myself that disability was just to stabilize my life, get me off the streets, get me a new start on life. I called SSI a “stepping stone” because I believed it was just a better launch pad from which to finally build the life I always knew I could build.
And here I am, 20 years later. That stepping stone turned out to be more of a primrose path.
They say that they help people transition back to work. But the mechanisms are geared for certain kinds of people and certain kinds of work. Even considering the fact that they have misclassified my royalties as unearned income rather than earned as they are legally required to, I am not the right kind of person seeking the right kind of work.
I tried Vocational Rehabilitation back in 1996. They turned me away, said they couldn’t help me, told me to get five years of intensive psychiatric treatment and then come back and try again. I looked at it again in 2009 and got the same rejection, except this time my unsuitability for assistance was predicated on my hypernychthemeral syndrome making me incompatible with any job that requires being available at specific times of the day rather than their misunderstanding of the real meaning of the sorts of scores Autistic people get on tests like the MMPI.
I looked into a program called PASS. I had looked into it a couple of years ago and dismissed it, but I decided to look into it again because I could no longer remember why I had decided it was unsuitable for me. PASS stands for Plan to Achieve Self-Support. I’m automatically nervous about it, because it means a higher level of government scrutiny into my personal life (and I already feel infantilized and staked-out enough as it is), but if it makes my life better, that loss of privacy might be a fair price to pay.
PASS allows a person to set aside money for an employment goal that does not get counted against the person when Social Security is deciding how much of their benefits they get to keep. For example, someone who was mowing lawns for pocket change might apply for PASS so they could save money for a riding mower to increase their earnings without being penalized for having more than the allowed amount of savings.
Another example is someone going to university to train as a nurse. They could use a PASS account to pay for textbooks, transportation to classes, and a nurse’s uniform upon graduation. Or someone who needs a better wheelchair than the government will give them if they are to be able to work, can use PASS to save for a nicer wheelchair so they can take a particular job.
Here’s the thing about PASS: you have to create a business plan that the government approves. They have to approve your choice of business, the feasibility for you to succeed in it, whether the things you want to save for are valid and appropriate, and whether you will ever be able to afford those things. The goal must be specific and related to work. “Get a degree” is rejected. “Buy a car” is rejected. “Become a carpenter” is accepted. “Become a history teacher” is accepted. You must have specific dates and indicate milestones of progress. And you must have things that you are required to buy in order to achieve that goal.
With a little more digging, I found out the definition of success — you must prove to the government that your plan will result in an income of at least $1000/month within five years or less.
So PASS is great for some people. But for someone trying to support themselves by writing, it’s never going to be accepted. I have what I require: a computer to write on, format books, submit them. Saving for the next computer when this one breaks is not something PASS will accept – it is not a tool I need in order to achieve this job, it is saving for future risk. My milestones, I assume, would be number of books sold or amount of royalties collected per month. But how could I prove that I will make $1000/ month from my writing? Ever? I have hope that I will. I sometimes even have confidence that I will (though my confidence is far too easily shattered — I haven’t yet figured out if that’s an artifact of my individual Autistic nervous system or a psychological result of a lifetime of put-downs, disappointments, and broken dreams. In the end, it doesn’t matter *why* I am this way — I am, and I work hard to accommodate for it with positive self-talk and keeping negative people out of my life.) But to write a business plan showing how it will happen? I’m not sure I could do that.
So, no, PASS isn’t really designed to help someone whose primarily skill set is writing and who has not evidenced the ability to do a writing job in an office setting within traditional employment and who doesn’t need to buy more things before they can do the job they are best suited for doing. The government has nothing available to help someone like me . . . and they have done a really good job of training me out of asking for help. It’s all up to me.
And, honestly, I thought I was making a pretty good start of things. With a budget of $0, I got a book out there and hundreds of people bought copies! And I’ve only been doing this “published author thing” since September 2013.
I really could eventually support myself with my writing . . . if the government would let me alone to do it!
I want to get free of government benefits. I want to get free of that sinking feeling of dread upon seeing one of *those* letters in my mail — that sinking feeling that pretty much ruins my productivity for the rest of the day, even if the news inside was neutral or good. This blog post is probably all I will accomplish today — I am keyed up and weird after getting my print outs of government forms and my letter to them and then opening a letter from Health and Welfare. I want a life where I am keyed up and weird about simpler things, like a flat tire. Things that are more obviously fundamental to my quality of life and far easier to fix than drowning in bureaucratic paperwork.
I want to spend my days focusing on whether I have the right verb tense and whether that last sentence was powerful enough as written. I don’t want to spend my days focusing on regulations and forms and reductions and rules in an effort to keep my government water line as high as they will let it go.
Someone complimented me on the letter I wrote to the Social Security Agency and said it was a pity that I am currently being forced to use my writing talents to defend my writing talents. I thought about it and realized that letter is meta-writing: writing about writing to protect the labor status of writing. That is what living on government benefits leads to — a person becomes a dog chasing its own tail in endlessly tighter spirals until it puffs away into nothing but a growl and a hank of fur.
I’m about to turn 47 and every year it feels like my dreams are moving backward, becoming smaller and smaller, less and less. This is why I need to stop living on benefits. This is why I need to get off this 20-mile-wide stepping stone, so I can have some hope of ever moving forward with my life. There aren’t many things I can do in this world but there is one thing I can do quite well and that’s write. It is time to see where my writing is able to take me. This dog has chased its tail long enough. It’s time to break free and leap forward with the scent of open fields and prey to chase and, finally and before it’s too late for me, the scent of real freedom.