Through my writing I have become emboldened to be 100% myself but even so I have avoided certain topics because the stigma attached to them stinks so fiercely I don’t have the energy to deal with the backlash. But I’m tired of hiding big important pieces of my life, especially if it means helping others understand. So today I am going to start this article with a huge admission: My name is Theophanes Avery. I’m a blogger, author of a book about my life, artist, photographer, and generally quirky human being. And I live on disability. This is not by my choosing. If life were perfect I’d have my health, I’d be working some regular job, and you wouldn’t be reading this entry. But alas, I suffer from frequent debilitating migraines and stomach pains and my general health is so flaky that working a regular job just isn’t a possibility. So I swallowed my pride and now live quietly with a little assistance. That is what I’d like to talk about today – about how this simple act has so drastically thrown my life into a state of constant chaos and why this needs to change. I write this for myself but also to stand up for everyone else out there who are choosing to remain silent. Below is a description of what this life really entails, not what political pundits want you to believe.
1. Stigma
Stigma is bad here in the US. Most of us actively hide being on disability because the reactions we get from people are so hostile and judgemental that it is exhausting to constantly have to defend ourselves. It seems most of the public believes that no one deserves to get any sort of benefit unless they’re two winks away from being in a permanent coma! And disability in and of itself is a vast issue. People can be disabled for all sorts of reasons – chronic illness, gratuitous injury, unrelenting pain disorders, or even mental illness. Many of these things can’t be immediately identified and people need to realize it is not the average citizen’s job to determine if someone else has severe enough disability to need help. That is the job of the people working the system and believe me, it takes more than signing a few papers to get on disability! Are there cases of fraud? Yes, I’m sure there are. There’s fraud in EVERY system throughout the government. Some people will always suck. Does that mean we should punish the far more populous needy because of a handful of bad apples?
2. Dependency
Dependency is a big one. People on disability desperately need every last penny and additional benefit because it’s not very much. Depending on what type of disability you’re receiving in most circumstances you get as little as $400 or as much as $800 a month. In addition to this you may or may not also receive health insurance, food stamps, and housing or heating assistance. To put this in perspective I live in the middle of nowhere and if I wanted to rent the cheapest apartment in my area I would likely be spending at least $800 to do so and that would not include things like utilities and heating. It definitely wouldn’t include a car, car insurance, internet, you know luxuries. This is why I’m in my thirties and still living with my parents. It’s either that are be put on a waiting list to live in a human beehive – which can take up to seven years to be approved in cases of Section 8 housing. Subsidized housing is also an option – I could get a very small one bedroom apartment surrounded by others living on disability or Social Security for a third of my “income.” Mostly these places are where we store single retirees not yet feeble enough to lock up in a home. Although I am happy this is still an option I know it’s not where I belong at this point in my life. I haven’t given up yet. Most people my age with these problems are either living with family or perpetually in a romantic relationship so they can have any sort of security. I’ll get back to that later.
For as little as disability pays for they also make you beg for it and it comes with a TON of rules. One of those rules is that if by some miracle you are able to save up some money, anything over $1,500 you have to claim it. Claiming it will reduce your stipend the next month because how dare you have savings?! Clearly the government is paying you too much if you do! This also means you cannot own anything over $2,000 in your own name. Even the shittiest of used cars generally are over that meaning reliable transportation is an iffy prospect at best – even if you’re using it to get to a job!
Finally we cannot own our own property unless we inherit a singular property after the death of someone who has willed it to us. That sounds nice, doesn’t it? This is until you realize we generally do not get enough money to keep any average property running and we have to accept it as is. I’m living with my parents in a house that made me sick in the first place. If they die and will it to me I do not have the option of selling it (without claiming the money from the sale – most of which I will lose back to the government) and I definitely don’t have the option of selling it and using the money to buy a smaller house (er, hunting cabin in the woods) that I can actually afford to keep. I realize that this is to prevent abuses of the system but in doing so it makes honest people second class citizens and shoots us in the foot in the process. For me, I once lived on a farm which I helped to run, learning how to do so with my disabilities. However everything was in my boyfriend’s name and when he decided he’d rather have another woman I was left to go back to my parents home in a little livestock free neighborhood. At the time I was breeding chickens and earning a reputation and a name to sell eggs and chicks. That following spring I was going to start hosting classes on various farming subjects during the summer when I am usually feeling up to it. I lost everything. In one fell swoop I lost my home, my potential income, my way off of disability, and to much lesser extent a shitty boyfriend I did better without. I don’t know any better way of showing I’m a second class citizen than that. This is how my great-grandmother lived. At the mercy of men. It’s not right.
3. Lack of Ability to Become Independent
At this point I am probably sounding like a skipping record but really, if I cannot have access to a reliable vehicle how am I supposed to get a job if I do feel well enough? And if I cannot secure myself housing that I can run my own little business out of then how am I supposed to “work from home”? And if my security is dependent on even having housing in the first place how am I even supposed to have any resources left for such lofty goals to begin with? If you ask the people who work the system they tell you they want you to work! In fact they’ll allow you to earn up to $2000 a month before they’ll start chipping away at your stipend. Also it can’t be full time, only part time, because too many hours will make them think you’re well and they’ll kick you off the system. This also applies if you work somewhere consecutively for more than nine months. Yes, you read that right. They punish you for working too much or too long and yet they are basically forcing you to work if you want to…. live. So lets just say you are doing well enough, not great, but well enough, and you do succeed in working part time for nine months – then what? Whatever progress you made will be shattered because you’ll either have to quit to “prove” you’re still disabled or give up disability altogether and take a devastating blow to your finances and continued stability. This is extremely problematic for people who could be OK with the right support or might be OK under the right circumstances. Again, we’re being shot in the foot. Without being able to build up a career where we can be paid better we still remain horrifically dependent on that meager stipend. It locks us into dire poverty.
4. The Profound Prevalence for Abuse
Now I’d like to talk about how all this puts us, but probably more so women, into a super precarious predicament. As I stated before I live with my parents. I am doing so for several reasons but mostly because I’m single, they’re alive, and I think my options are more hopeful here. However with that being said, if I didn’t have my family to fall back on, which many people don’t, I’d be up Shit Creek without a paddle. Most of us on disability find ourselves in constant relationships whether we want to be or not and because speed is of importance often our choices in partner are… not the best. To add strain to this situation there’s already a MASSIVE power imbalance when entering a relationship with someone who is independent. This doesn’t have to be a problem but very frequently it is. Abusive men LOVE finding women who are vulnerable. How many of us put up with less than optimal circumstances because we had stability and a roof over our heads?! I admit I did! I was 25 when I got into my first relationship. I waited that long because I knew all this and was searching for someone who was perfect. They never came along. Instead I ended up with someone who did not respect me, who pushed me constantly WAY past my boundaries both physically and mentally, who used me to make himself look like some sort of saint for taking me in, and I put up with all of this while doing 100% of the domestic chores and denying my own most basic needs and identity – because if it’s not broken don’t fix it! And of course I was willing to sacrifice and do what was best. Of course I did all the domestic chores this is what society has repeatedly told me my entire worth as a disabled woman is based on. I should just be grateful to have found someone who gave me my dreams, right? At the time I felt so.
After the break up I spent a long time thinking about everything I’d gone through during the relationship and just how much I put up with without ever fighting for myself. Why had I done that? I always prided myself on being articulate, opinionated, and capable… and yet, I lost all of that in that relationship. When I finally found out why my reasoning made my own stomach churn. I did it because he never beat me. And he had financial stability. That’s all. That’s the extent of it. I put up with years of emotional torture because to me that wasn’t abuse. Or if it was it was just the price I had to pay for being disabled. But here’s the thing, I shouldn’t have to do penance for being disabled! That is not something I did to myself nor is it something I can control! And suddenly I find myself seething with rage. And fear. Because I don’t like living with my parents in my thirties. I want to be on my own. I want to be earning my own way. I want to be independent and I am terrified of getting into another relationship because if I ever move in with them I will never be able to say with absolute certainty that I didn’t get to that place just to get out of this place – the same thing that led me to being in such a bad situation before. How much of my soul can I sell off? What if the answer is none?
And so here we are. Here I am. Trying to hack it as a writer – “monetizing” all my blogs, trying to sell my book, hoping above all hope that someday these things will rescue me from this situation because I’m not lazy, I’m not afraid of work. I’m not looking for “the easy life” or “hand outs.” I’m looking for a meaningful existence – and rumor has it so are a lot of other people in the same situation who for the most part don’t wish their situation on healthy individuals. So please, have some compassion, learn the facts, and be kind.
Final Note: All photos have been taken by myself and converted to black and white. Living life in the slow lane has trained my eye to see the beauty that surrounds me at all times and I hope in some small way to share this with you through my photography.