Years ago, when I was a biomedical engineering major and I thought I was going to be employable, I lived in an apartment and had a car and did all those things non-disabled people do. And I was stressed out, really stressed out, living on the edge of independence and just teetering, trying to keep my balance.
Eventually I switched majors from BME to psychology–an easier program, and one that interested me.
The car didn’t last long, totaled thanks to my poor reflexes and lack of the sort of short-notice judgment that makes me a dangerous driver. My driver’s license ran out; now I just have a state ID. I moved closer to WSU, but my executive function was still bad, and it was hard for me to get to class. They sent a van across the street to pick me up. I forgot to study; they provided one of their testing rooms, distraction-free, so I would have somewhere away from the temptations of my apartment to study. They interceded with professors and got me extra time.
I was taking classes part-time, with intensive help from the department of disability services; I couldn’t sustain full-time work. If Wright State hadn’t been willing to go out of its way for me, I’d never have gotten a degree at all. I was diagnosed with dysthymia as well as episodic major depression, which explained why I never seemed to get my energy back after an episode.
I graduated. GPA 3.5, respectable. Dreaming of graduate school. Blew the practice GRE out of the water.
I tried to get a job. I worked with my job coach for more than a year. I wanted a graduate assistantship, but nobody wanted me. We looked at jobs that would let me use my education, but nobody was hiring. Eventually we branched out into more low-level work–hospital receptionist, dog kennel attendant, pharmacy technician. They were all part-time; by that point I knew better than to assume I could stick it out for a 40-hour work week.
The pharmacy tech job almost succeeded, but the boss couldn’t work with the assisted transport service that could only deliver me between the hours of 9 and 3–plus, they’d assured me it was part time, only to schedule me for 35 hours. I can only assume they hired “part-time” workers to avoid paying them benefits.
I signed up with Varsity Tutors to teach math, science, writing, and statistics. I enjoyed the work, especially when I got to use my writing ability to help someone communicate clearly, or made statistics understandable to someone unused to thinking about math. But it wasn’t steady work; you were competing with all the other tutors. You had to accept a new assignment within seconds, even before you knew what it was or whether you could teach that topic, because if you didn’t someone else would click on it first. Students paid a huge fee–$50 an hour or thereabouts–of which we only got about $10. Sometimes, when I grabbed a job that involved teaching something I myself hadn’t learned yet, I had to spend hours preparing for a one-hour session–and no, preparation hours aren’t paid.
I grew tired of cheating the customers; I’m not worth a $50-an-hour tutoring fee, and practically all of the money went to the company for doing nothing more than maintaining a Web service to match tutors and clients. And since I’d paid, out of my own pocket, for a tablet, Web cam, and internet connection, I hadn’t actually made any money anyway. I suppose I would have, if I’d stuck with it, but I just don’t like feeling so dishonest. It’s been more than a year since I last had contact with them, so I can say that. No more non-disclosure agreement. I’m sure they haven’t changed, though.
I was running out of money. My disability payments couldn’t pay for my rent. Eventually, a friend who was remodeling a house in a Cincinnati suburb offered me a rented room, within my means, and I accepted.
For a year, I lived in a room of a house undergoing remodeling. Eventually, I moved downstairs, into a finished basement room. College loan companies bombarded me with mail, demanding money I didn’t have. With the US government becoming increasingly unstable, I worried that if I even tried to work, I might lose Medicaid, and without a Medicaid buy-in available, I would have to choose between working and taking my medication (note: I cannot work if I am not taking my meds; in fact, I am in deadly danger if I do not take my meds). It didn’t help that my area has no particularly good public transport service, and the assisted transport service is–as always–unreliable and cannot be used to get to work.
Eventually I gave in. I applied for permanent disability discharge of my student loans, and was granted it. I feel dishonest–again–for not being able to predict, when I got my degree, that it wouldn’t make me employable. But there it is. The world doesn’t like to hire people who are different, or who need accommodations, or who can’t fit into the machinery of society.
But a person can’t just sit around. I do a lot of volunteer work now. I’m the primary researcher for ASAN’s disability day of mourning web site; I spend an hour or more every day monitoring the news, keeping records, and writing bios of disabled people murdered by their families and caregivers. I’ve kept up with my own Autism Memorial site, too, and the list is nearly 500 names long now. Seems like a lot, but my spreadsheet of disabled homicide victims in general is approaching five thousand.
Two days a week, I volunteer at the library. I put away books, straighten shelves, help patrons find things. The board of directors of the library fired all the pages years ago as a cost-cutting measure, so it’s volunteers like me that keep the books on the shelves while the employees are stuck manning the checkout desk or the book return. I find the work very meaningful, especially in the current political climate; libraries are wonderful, subversive places that teach a person to think on their own.
In the backyard of the house, I’m growing a garden. Gardening is new to me, but last year I had an overabundance of cherry tomatoes, and this year I’m growing tomatoes, eppers, cucumbers, carrots, sunflowers, and various herbs. I keep the lawn mowed and the bushes trimmed. The garden is a good thing, because lately my food stamps have been cut and I can’t really afford produce anymore.
My housemate’s girlfriend moved in with him last summer. She’s a sweet teacher with two guinea pigs and a love of stories. On Fridays, we drive for an hour to go play D&D with friends, and I bake cookies. I’ve learned to bake cookies over the last few years; at first it was just frozen cookie dough, then from scratch. I’ve gotten pretty good at it.
After my cat Tiny died of kidney failure, Christy got more vocal and demanding. She yells at me now when she wants attention, and climbs up on my bed to snuggle with me. She seems to think she needs to do the job of two cats. She’s getting older now, less able to climb to the top of the furniture or snatch a fly out of the air with her paws; but she still gets the kitty crazies, running around and skating on the rag rugs I made to keep the concrete floor from being quite so chilly.
I’m still myself–idealistic, protective, with a deep need to be useful. Living now is easier than it used to be when I had college loans; I just don’t buy anything I don’t absolutely need, help where I can, and let the rest go. I still have to deal with depression and with the executive dysfunction and weird brain of autism, but that’s a part of me, and I see no sense in looking down on myself just because I’m disabled.
I worry about the future. Just when it’s becoming crucial, our country’s dropping the ball on climate change. Our president is erratic, untrustworthy, and unethical. Authoritarianism looms large on the horizon. I do my best as a private citizen to help change things–with a focus on preserving democracy–but it’s still frightening, because disabled people are always the ones who get hurt first, right along with the poor and the minorities. I have quite a few deaths in ICE detainment in that database of mine, all of disabled immigrants. Why do people have to hate each other so much? Life is not a zero-sum game; if we help others, we ourselves benefit. We have so much to give; why are we refusing to share?
I find meaning in life from all the little things I do do make the world a little better, even if it’s just making cookies or showing a kid where to find the “Harry Potter” books. I used to think I might do something grand with my life, but now I don’t really think so. I think maybe a better world is made up of a lot of little people, all doing little things, all pushing in the right direction, until the sheer weight of numbers can move mountains.