Survivor's Guilt
For a person with a disability, I have been extraordinarily lucky. When I was without a home, a friend took me in. My school is extremely disability-friendly. I was accepted for SSI without even an appeal. Despite two years of misdiagnosis, the possibility that I had autism was taken seriously. Professors and advisors continually make exceptions for me to allow me to do group projects on my own or make up missed work. One professor even told me explicitly that he would not mind my being late to class, as long as I was there, because I had explained that I sometimes would not go if I knew I'd have to walk in late. Ever since I've had food stamps I've had enough to eat. My landlord had no trouble with my cats' status as emotional support animals. People keep helping me.
Lately I have been working with a psychologist at the school counseling center. She has a lot of experience with getting services for disabled people. We're trying to get help from MRDD (short for "mental retardation, developmental disabilities") to get me some kind of case manager or aide, because I keep on missing appointments, getting disorganized, mixing up bills and paperwork, mixing up my schoolwork, and occasionally disappearing from the face of the earth as I nest in my apartment, incommunicado. I was sitting in her office, with her flipping through this stack of paperwork maybe three inches thick--the medical records we had been able to obtain on my history. There wasn't nearly enough information there, thanks to a childhood spent being raised by someone who didn't believe that an intelligent person could have a developmental disability, and she had to fight with MRDD to even consider my case. In the end we got a marginal "yes", which means we're going to have to work on even more paperwork to get closer to the remote possibility of actually getting any assistance. And yet, I feel optimistic. In my life, somehow things always seem to have worked out. I always seem to find a way to survive and keep learning. For somebody who has "major depression, recurrent, severe" (according to my records), that kind of optimism is pretty impressive.
And at the same time I'm always so painfully aware of how much better I have it than so many other people. Six days previous to that meeting, a twelve-year-old girl named Tamiyah Audain had been found dead, neglected and starved, covered in bedsores and bruises. Tamiyah was autistic, like me.
I keep the memorial pages partly because it's easier to deal with the reality of the ablist prejudice we face if I don't try to ignore it. I want to say, "This person was a real person, an individual, someone we might have gotten to know and now will never get the chance to meet." It's easier that way than to try to ignore it, knowing how easily people like Tamiyah are forgotten.
I'm not in Tamiyah's situation, but it's mostly luck that I'm not. I was born with academic talents and the potential to learn how to speak fluently (most of the time), which means that people can't pretend as easily that I have nothing to say. I had a mother who, if she didn't get me the assistance I needed, at least didn't starve me; and unlike Tamiyah's mother, mine is still alive. Tamiyah also had a physical disability caused by tuberous sclerosis. She couldn't ask for help or try to escape.
When I was sitting in that meeting, talking to the psychologist and trying to hash out an agreement with MRDD, I made the statement, "I don't want to take away resources from somebody who needs it more than me." The psychologist basically told me to stop being silly--that I deserved the help we were asking for. (Yeah, can you tell she's into disability advocacy?)
But it really does bug me sometimes. I'm sitting here in my little apartment, with my cat lounging on the carpet. I'm not late on my medication. There's plenty of food in my cupboards. I can go to the doctor and I can go to counseling. I even got a flu shot the other day. I take my tests in a quiet room where I can think out loud or pace or even sit on the floor and rock if I need to. My professors don't mind if I go to their offices and ask questions. People keep helping me.
And at the same time, Tamiyah Audain is starving, sick, alone. And then, dead.
It just feels so unfair.
I don't think that I shouldn't be getting the help that I'm getting. It just gets difficult to live with the fact that other people get much less help, are much less valued, than I am. I want everybody to have what I have, and more. It feels like I'm eating a seven-course dinner in the middle of a famine.
I guess I could lose what I have. It's always been precarious. I've lost food stamps, Medicaid, SSI, mostly because I couldn't keep up with the paperwork. I always got back on them, but mostly because people at my school kept helping me with the paperwork when I needed it. What if I were alone? What if I didn't have anybody to do that? I'd be homeless. Literally.
I hate unfairness of any sort. I feel guilty for accepting help when other people don't get it. And yet I know, rationally, that there's no way my refusing help would make it easier for anybody else to get it. If anything, every time a disabled person gets the support they need and is able to live in and contribute to their community, we learn that it's possible. It gets easier for other people to get what they need, too.
As is so often the case, it's hard to make my emotions listen to reason. I can tell myself that it's okay to get help even if other people aren't getting it, but I can't make myself listen.
Lately I have been working with a psychologist at the school counseling center. She has a lot of experience with getting services for disabled people. We're trying to get help from MRDD (short for "mental retardation, developmental disabilities") to get me some kind of case manager or aide, because I keep on missing appointments, getting disorganized, mixing up bills and paperwork, mixing up my schoolwork, and occasionally disappearing from the face of the earth as I nest in my apartment, incommunicado. I was sitting in her office, with her flipping through this stack of paperwork maybe three inches thick--the medical records we had been able to obtain on my history. There wasn't nearly enough information there, thanks to a childhood spent being raised by someone who didn't believe that an intelligent person could have a developmental disability, and she had to fight with MRDD to even consider my case. In the end we got a marginal "yes", which means we're going to have to work on even more paperwork to get closer to the remote possibility of actually getting any assistance. And yet, I feel optimistic. In my life, somehow things always seem to have worked out. I always seem to find a way to survive and keep learning. For somebody who has "major depression, recurrent, severe" (according to my records), that kind of optimism is pretty impressive.
And at the same time I'm always so painfully aware of how much better I have it than so many other people. Six days previous to that meeting, a twelve-year-old girl named Tamiyah Audain had been found dead, neglected and starved, covered in bedsores and bruises. Tamiyah was autistic, like me.
I keep the memorial pages partly because it's easier to deal with the reality of the ablist prejudice we face if I don't try to ignore it. I want to say, "This person was a real person, an individual, someone we might have gotten to know and now will never get the chance to meet." It's easier that way than to try to ignore it, knowing how easily people like Tamiyah are forgotten.
I'm not in Tamiyah's situation, but it's mostly luck that I'm not. I was born with academic talents and the potential to learn how to speak fluently (most of the time), which means that people can't pretend as easily that I have nothing to say. I had a mother who, if she didn't get me the assistance I needed, at least didn't starve me; and unlike Tamiyah's mother, mine is still alive. Tamiyah also had a physical disability caused by tuberous sclerosis. She couldn't ask for help or try to escape.
When I was sitting in that meeting, talking to the psychologist and trying to hash out an agreement with MRDD, I made the statement, "I don't want to take away resources from somebody who needs it more than me." The psychologist basically told me to stop being silly--that I deserved the help we were asking for. (Yeah, can you tell she's into disability advocacy?)
But it really does bug me sometimes. I'm sitting here in my little apartment, with my cat lounging on the carpet. I'm not late on my medication. There's plenty of food in my cupboards. I can go to the doctor and I can go to counseling. I even got a flu shot the other day. I take my tests in a quiet room where I can think out loud or pace or even sit on the floor and rock if I need to. My professors don't mind if I go to their offices and ask questions. People keep helping me.
And at the same time, Tamiyah Audain is starving, sick, alone. And then, dead.
It just feels so unfair.
I don't think that I shouldn't be getting the help that I'm getting. It just gets difficult to live with the fact that other people get much less help, are much less valued, than I am. I want everybody to have what I have, and more. It feels like I'm eating a seven-course dinner in the middle of a famine.
I guess I could lose what I have. It's always been precarious. I've lost food stamps, Medicaid, SSI, mostly because I couldn't keep up with the paperwork. I always got back on them, but mostly because people at my school kept helping me with the paperwork when I needed it. What if I were alone? What if I didn't have anybody to do that? I'd be homeless. Literally.
I hate unfairness of any sort. I feel guilty for accepting help when other people don't get it. And yet I know, rationally, that there's no way my refusing help would make it easier for anybody else to get it. If anything, every time a disabled person gets the support they need and is able to live in and contribute to their community, we learn that it's possible. It gets easier for other people to get what they need, too.
As is so often the case, it's hard to make my emotions listen to reason. I can tell myself that it's okay to get help even if other people aren't getting it, but I can't make myself listen.