Why Living with Chronic Illness in a Capitalist Society is Dehumanizing
I’m not sure when the government will look at its disabled citizens and see us as people that deserve the same quality of life as everyone else.
By Jazmine Joyner
I have been disabled for nine years, and I have been unable to work a 9 to 5 job for four years. Like millions of people around the world, I live with invisible illnesses like ME (aka chronic fatigue syndrome), fibromyalgia, tactile allodynia, and osteoarthritis in my spine. All these illnesses make it difficult to do daily things able-bodied people take for granted like showering, dressing, making food and driving.
It wasn’t alway this way, as I get older my symptoms get progressively worse. When I was younger I could hop out of bed go for a run, shower, make myself breakfast and go to my part-time job. At times this routine would be difficult to maintain but even when it got difficult I was still able to go to work.
When I turned 23 I reached a tipping point — one day while prepping for the department Christmas party I sneezed and dislocated my spine. Yes, a sneeze sent me down this downward spiral. I couldn’t walk and the injury sent my fibromyalgia and ME into overdrive. I had to cut back on work, and eventually, I had to stop working altogether. I lived with my mother at the time, there was no way I could afford to live alone on the meager pay I received working part-time. I tried to live on my own at 21, I lived in Atlanta while I was going to school full-time. I had to find a way to pay my tuition, all while trying to maintain a sense of health, and I failed. I got sick from the stress of everything, and couldn’t work or go to school. So I couldn’t pay my tuition and I came home, deathly ill and with my tail between my legs.
I have never been able to financially take care of myself. With my limited mobility and health, the capitalist society we live in wasn’t built with people like me in mind. I applied for supplemental security income (SSI) four times to no avail. I was told my work experience was lacking, that I wasn’t disabled enough for government assistance. With every letter, it was another failure to acquire the independence to buy my own medicine and attempt to take care of my own basic living essentials. My self-confidence dwindled and I fell into a huge depression that I am still fighting today.
I am one of three children, my older sister went away to college and got a degree in physics and teaches at UCLA, while my younger brother is in school getting a degree in biochemical engineering. They both have paid their way through school, live on their own, and can hold down jobs. I can’t help but compare myself to their success. I lived with my mother until I was 25 and then I moved out with my partner. He has taken on the financial burden that is me. I feel guilt everyday that I can’t seem to help financially contribute to our life together.
In 2016 we opened a comic shop and I managed it, but even then I struggled to physically run the shop. In the end, I got so sick that we had to close the shop as we tried to dig ourselves out of the financial hole my illness put us in. My partner has never made me feel like I was a burden, that is all me. He understands my limitations and disabilities, and even with all this understanding I still feel like I don’t amount to anything because of the emptiness of my bank account.
Society regards disabled people in negative, ableist, and dangerous ways. People will dehumanize you if you say you can’t work or go to school and that you live with your family; you are viewed as lazy, and as someone who is trying to mooch off of those around you. If you accept government assistance and try to gain some type of independence they don’t see you as someone who needs the help, but as someone who refuses to work, someone who wants the world handed to you on a silver platter. That’s erasure, erasure of what disabled people go through everyday — being chronically ill or disabled feels like a full-time job. What’s wild is people think If I could go out and work a normal 9-5, go to school, and live a “normal’ life I wouldn’t choose that over the shame I feel not having a cent to my name?
There are people with disabilities who physically can’t work, and that doesn’t mean they deserve a lesser quality of life because of the hand that was dealt to them. Then there are disabled people who can work, but cannot do the labor intensive jobs that are available to those without access to higher education. So there is no other choice but to try and find a system that will help you put food on the table and make sure you can afford your meds. But that system is not one built to uplift those in need but to keep them destitute and without opportunities.
Related: 5 WAYS ABLEISM LOOKS IN QUEER SPACES
In the United States what you do is seen as who you are, what you’ve accomplished is marked up as your worth or value as a human being. Those of us who can’t keep up are subjected to live in abject poverty. That’s how capitalism works, what you can afford to have equals your worth.
My chronic illnesses and lack of funds have prevented me from continuing my education, getting a job and keeping a steady flow of income. If I followed the rules of capitalism my worth would equate to nothing, and for years my self confidence has been wrapped up in that toxic concept. The financial strain on my partner to take care of me isn’t fair to him. There are people around this country who are disabled but don’t have the same supportive system of family and friends I have around me. For those people and for me there are no systems in place to lift them out of poverty, and there should be. Like the safety nets built for rich corporations, there should be a net for the people in this country who become ill or disabled. In the U.S. it is still legal to pay disabled people far less than an able-bodied person doing the same exact job. Yep, that’s totally true, look it up. The systems in place now are not raising our quality of life but sustaining a lifestyle of poverty and sadness that could easily be rectified if our government listened to the people who use SSI and disability.
For me capitalism means imprisonment, constant worry, and ableism. I have yet to find my footing in this system and I don’t know if I ever will. I’m not sure when the government will look at its disabled citizens and see us as people that deserve the same quality of life as everyone else. Capitalism is rigged for us to fail and it is up to us to tell our stories and try to have our voices heard to try and effect a change in this country.
Author Bio: Jazmine Joyner is a black disabled femme writer who resides in Southern California. In her free time she likes to write, play video games, and read.