It Started with a Desperate Situation and a Lot of Sweet Talk
By the time I was nineteen I had already gone through more than most adults. I was worn out and weary. I’d sacrificed “the best years of my life” to touring all the hospitals and doctor’s offices of New England only to be called a mystery. I had quit school, grieved the loss of a future STEM career, lost touch with all my friends, and was now staring at a bleak future of not being able to work.
Disability seemed to be the answer… the social safety net for people like me to make sure I wouldn’t die cold and hungry on the street for having the audacity of owning a body that routinely failed me. Disability gave a small stipend to live on, health insurance so I could continue to receive care, and food stamps so I wouldn’t starve.
Still a little voice in my head head was screaming I didn’t want to be on it. I didn’t want the stigma. I didn’t want to rely on society to take care of me. But what other choice did I really have? I knew any work I could try would only work for a short burst of time before I’d eventually be fired for randomly not showing up on bad days. On good days I had accused myself of being overdramatic and signed up for volunteer jobs to prove I could indeed work. None of them lasted long but I didn’t want to embrace that grim reality.
It went Quickly from Sweet Talk to Testing
Despite what hateful able-bodied people often spew getting on disability was not a cake walk or a hand out. And it definitely wasn’t the good life. In order to prove I had an issue worth being on disability for I had to gather an ungodly amount of proof, more so than most because my condition was still a mystery. This was all normal procedure as getting on disability is not an easy thing to do. It required not just evidence but a lawyer and two years of my time. All proof of my suffering. And through all this I was aware of my privelege. In the US the majority of disability recipients are white. This is not because there’s more of us than other races, it’s because we’re the ones most likely to be able to afford a lawyer and several years of our life. This means there’s tons of people out there who should be on it that aren’t because they just never could get the opportunity. I wonder about these people often – and how they do it – and how they survive. I realized immediately the cruelty of this system.
In order to get disability you have to go before a judge and plead your case. I was told not to expect a win because most people did not get through in the first round but on a series of appeals that could take years and I might be one of those people because I didn’t have a solid diagnosis. But my court date went well. The judge was sympathetic and seemed to see something in me I couldn’t see in myself at the time. He told me now I was on disability I’d be taken care of for life should I not improve. But I was also guided by my lawyer that if I improved I could get off the system and if I didn’t I’d be reviewed every five or ten years but almost no one gets thrown off… that was usually left to cases of proven fraud.
We all let out a collective sigh. Now I could have a meager stipend to live off of, health insurance to continue care, and food stamps to stave off starvation. It wasn’t life behind the white picket fence by any means but it was better than dying in the gutters. I wasn’t going to complain.
The Move from Caring to Punishing
I believe the people who started the disability program in the US had good intentions. I believe they really wanted to help people who could not help themselves. And I think it was in that spirit that system came into existence but I don’t think it took long before lawmakers and politicians turned it into something much more skewed. It got worse and worse over the years as things changed within the machine but basically it went from a program trying to help vulnerable individuals to a program focused on punishing anyone who might be on the system unjustly. The problem with this is it punishes the rest of us too. It’d take me years to realize how all these rules truly limited me.
I was not allowed savings over $2,000 but conversely I also wasn’t allowed to own anything in my own name over $2,000. I was allowed to own one residential property but it had to be inherited after a death and I couldn’t sell it without losing my benefits. Nor could I really keep it because what household can you run on $650-800 (the average stipend) a month?? Everyone I knew on the system who had a car did so under their parents or partner’s name which left them vulnerable to such a thing being taken away. Housing was also an issue. Since the housing crash Section 8 Housing which was made for people in these circumstances had an eight year waiting list, longer if you were single without kids like I was and the contracts to this and the low income housing were often for two years with forced payment even if you were evicted or moved. They were the most predatory things taking advantage of only the poorest of people.
I was still allowed to work – if I could find work that’d put up with my flippancy, as long as I didn’t earn more than 2 grand a month or go over what is normally considered part time hours. Anything above that and they’d start taking away benefits. They also limited what kind of work I could do… nothing with a lump sum would be a good idea because anything more than $2,000 would eat away at my benefits. This ruled out anything that I could get a $2,000+ commission for and definitely ruled out getting a book published by a traditional publisher because they first pay you a forward before getting your book out there. Supposing I got $25k to publish a book I would lose my benefits for as long as I had over $2,000 in my bank account and it this went on for more than a year I’d likely have all my benefits taken away from me permanently because they’d deem I was doing too well for myself. But the gap between what the benefits offer and what it takes to actually live a decent life is ENORMOUS and ever growing. The cost of living increase last year was about a buck a month. If I thought my budge was tight in the beginning, now a decade and a half later I was finding it suffocating.
The Ever Moving Goalposts…
If I thought the rules were unfair when I started I would watch in horror as the screws kept getting turned tighter and tighter. In the state I live in I was told the amount I could own and save first went down from $2,000 to $1,500, to its current rate of $1,200. Food stamps also got drastically cut. I went from nearly $200 a month to $16. And I knew from others that complaining or asking questions would likely end in my case’s termination or a lower pay. They don’t admit this publicly but I have seen it over and over again and now I had something new to worry about. Because of changes in the system from the Trump administration disability cases were filed as “permanent” or “likely to improve,” which changed it from being a social safety net to a business looking for people to throw off it to save themselves a few bucks. I witnesses this first hand when they suddenly decided I was capable of working (though did not explain their reasoning) and immediately cut me off all benefits with no warning what-so-ever. At that point I’d been on it for 16 years and had never had anyone challenge my claim even though now they were reviewing it every 2-3 years. It was unprecedented. And I appealed.
From November into January I was physically ill with stress wondering how I was going to deal with this mess. I thanked God I lived with my parents because if I didn’t I would have likely ended up on the streets. I had none of the new evidence they were asking for because doctors were 100% useless for any complaint I may have had in those 16 years… so I had stopped going.
I wondered if this had something to do with the three books I published on Amazon. Did they think I was capable of work just because during a few good stretches I’d accomplished something? They had my tax forms… they should know that I earned all of $23 on those books last year. That’s not a goddamn job, it’s a cute hobby. Horror. What if working at all doing anything, even hobbies, was now seen as being able to work full time?? I watched others lobbed off the system at the same time. Something had changed and none of us knew what.
It Controls Your Relationships with Other People
“Never get married,” I was told by one social worker helping with my case. “You’ll lose most your benefits and end up with maybe $200 a month. It’s not worth it.” Over the years I’d learn that in addition to being punished for being married I would also be punished for relying on anyone else at all while the state simultaneously seemed to try and pawn me off on anyone else who could take financial care for me. It was a mixed message and beyond fucked up.
And this whole system forces people on disability to rely on others because there’s literally no other way. This is dangerous because it encourages the weakest in society to “make due” with whoever will take them. Almost all of us end up in abusive relationships with romantic partners because of this – because we need a roof over our heads. And what about those who wish to live as singles? That seems to be something completely unaccounted for. And with no real financial independence or ability to save we’re further put in a precarious situation when we try to escape abusers.
If that all isn’t enough there’s society itself who are all the happier to tell you that you don’t look disabled and shouldn’t have any benefits. You’re just some lazy motherfucker that doesn’t want to work like the rest of us. And god forbid if you have children. Then you’re just a breeder.
When I meet new people I dread them asking what I do for a living. Now I smile and say I’m a writer but that’s only a half truth. $23 does not a career make.
It’s all a Game Tilted for Them to Win and You to Lose
It’s not surprising when paranoia seeps in. Did I say exactly the right things? Did I meet the right people in the process? Did I miss a step somewhere? I was caught in a trap many of us find ourselves in – told between the lines that we have to keep going to doctors – doctors who usually think we’re hypochondriacs because we have to be in there all the time to leave a written record of our struggles.
I noticed the forms that kept coming in were mostly the same questions but written in different wording. I got the distinct feeling they were trying to trick me into saying something to incriminate myself. And I was given no time at all to get them back in time to be filed. The first set of paperwork that started my woes in 2020 I got super late. The letter said if I didn’t send it back filled out within the ten days they think I received it then I’d immediately be thrown off and would not be able to appeal. I filled it out and drove straight to their offices, having no time to mail it, only to find their offices were closed due to Covid and they would not accept it at the door. I had to go to the library and fax it! And the second batch of paperwork got sent while my local PO was all but shut down due to the staff coming down with Covid. AGAIN I got it super late and literally had to immediately fill it out and drive it to a different town to send out the same day. There was no room for error.
After three months I won my appeal but they didn’t tell me that. A letter told me I’d need to see a judge to argue my appeal. They never scheduled a court appointment. With no explanation what-so-ever they just put me back on the system. I didn’t trust it but what else could I do?
Sure enough it’s been a month since things have gone back to normal and guess what I received on Friday? More paperwork asking about my condition that they are again trying to determine. A MONTH.
I’ve Done So Many Back Flips and Groveling I Don’t Feel Good About Myself Anymore
The worst part about being in a toxic relationship is being so dependent on your abuser that you are desperate to stay in their care. So desperate you find yourself pathetic and groveling, bending yourself to every new test. Gaslighting yourself all along the way (well maybe I have improved enough to work… maybe I am fine… maybe it is just in my head…) I don’t like who I have become. I would MUCH rather be healthy and working a normal job and having nothing to do with this train wreck. At least I’d have my dignity, my independence, my sanity. But if I have learned anything from this past year it’s that as ambitous and driven I am I am not truely functional. I learned this when I found myself visiting my boyfriend a few weeks ago. I have not let anyone see my true struggles and pain, not even my former romantic partner, but it’s progressed to the point I literally can’t hide it anymore. So instead I found myself on his couch, too sick to move, and in so much pain he was looking increasingly distressed at the situation knowing there was nothing he could do to help.
But I’m normal.
And capable of work.
Says the system.