This is a topic I’ve discussed before, but it keeps coming up. In my life, I’m constantly advocating for myself as a person with a disability. The social safety net and the HR departments are set up in such a way that I have to paint myself in the most pathetic possible light in order to get any help or accommodation. I’m not able to get disability income because I try too hard. I’m able to make SEA, “Substantial Economic Activity,” therefore the Social Security Administration deems me fully able to work. Mind you, the SEA threshold is about a fifth of what I used to make, and a third of what I need to stay in my home. The SEA threshold is not enough for anyone to live independently. It is assumed that if you can’t do a conventional job, you can’t take care of yourself either. They do not think I have the right to expect to keep my own place. I’m supposed to settle for a reduced standard of living—so reduced that privacy and autonomy aren’t part of the picture.
When I was working with the Department of Vocational Rehabilitation, I tried to explain that I could do their proposed jobs for 3 hours a day, an hour at a time, but not 8 in a single shift, and that is the nature of my problem. It’s hard to flunk a work assessment; there is almost no task I can’t do one time. It’s keeping it up all day that won’t happen. My lather function is great, there’s just no rinse and repeat. The DVR case worker said she thought I didn’t really want a job. She was blind; her limitation was obvious and consistent. She couldn’t appreciate my issues. It would be like her waking up some days able to recognize faces, others just light and dark, and some days completely dark. It was just too far outside her own experience to relate to. If she had actually tried, she’d have realized that no conventional job was going to work for me and she was going to have think outside the box—that smacked of effort and Lord knows we can’t have that, not in a windowless brick state office building with a beige lobby. You won’t find any inspiring disabled people they make movies about there.
I want to be someone they make a movie about. I would rather focus on what I can do, not what I can’t do. Rather than complain about how hard it is to hold a pen, I want to show them the art I made with my ravaged hand. Never mind that it took me 3 times as long as it used to, isn’t it beautiful? Doesn’t the way it was made make it more so? Is it really the best use of my gifts to stuff me in a cubicle in Accounts Payable? Is there any triumph in that?
A few years ago I was working a booth at a local festival, selling the beaded jewelry I made. A woman approached my booth in a wheelchair pushed by her teenage daughter. The woman gushed over my pieces and said she used to make similar things before (she gestured to the chair) “this happened.” She had severed her spinal cord in a car accident about 10 years before.
I looked at her, confused. “Are your arms affected?” I asked. No, it was just too hard; everything was harder and took longer from the chair. Getting supplies was a hassle, and she couldn’t stick with the craft work for any length of time. I gestured to the table and said, “I made all this with a reattached hand.” I showed her the gnarly scar where my entire wrist was plowed up and looked like chewed gum. No neat ligature mark, I had a “degloving” injury. It was classified as a full amputation because the radial and ulnar nerves were both severed along with the radial artery. Mine was not a clean reattachment; it took hours of surgery and I lost nerve tissue where the ulnar nerve shredded and there was no flat attachment site. I don’t have full feeling in my hand, though thanks to excellent therapy, I do have full movement.
I explained to the woman that I work in 20-minute increments and use a bead tray to keep my work portable and easy to come back to. The woman sat in silence for a minute, picking up bracelets and necklaces and examining the fine bead weaving, then she said to her daughter, “Take me to Michael’s Crafts. NOW.” The girl pushed her mom across the grassy field and left me grinning. A few minutes later, the girl came running back alone and unhooked a beaded bracelet from her own ankle. She handed it to me and said breathlessly, “I made this. I want you to have it. For being nice to my mom.” She ran back across the field and I put on the anklet with tears in my eyes. I still cherish that anklet.
This is what I want to do, to share my triumphs with the world and do what I can do well, in the time it damn well takes me to do it. I can’t fit into your box, but I shouldn’t have to. I should be able to live life on my own terms, be useful to society, and receive an appropriate income that gives me a decent living standard. In Michele Lent Hirsch’s book that I’ve discussed in my last two posts, she says “Disability is about society’s failure to make a place for you.” Society has tried, but they lack imagination. They need everyone to be the same because Heaven forbid they should have to think creatively. This leaves me to think creatively for myself and make my own place in the world. It’s hard, and people like me should get a stipend while we are reinventing ourselves so we don’t lose our homes and savings in the process.
If I made enough money to not worry all the time, if I could just go to the dentist or take my cats to the vet when I need to, like I did before this happened, I would be happier now than I’ve ever been. I like working from home, I love my low-cost bicycle vacations, and I like being the one in my condo complex who the older people call when they need a ride to the doctor, because I’m home and can put my work aside long enough to do that for them. I even often like the therapeutic exercise I have to do every day to keep in my best condition. Even with the pain, even with the bad days, my life is good if you take money out of the equation. The constant worry about money is exhausting, though. I don’t even ask for the high salary I made when I worked full time, I just want a livable income. Our disability agencies should be about making up the shortfall until we can do that ourselves, not making us feel completely worthless before we get our pittance.
This is, to me, disability non-binary: fully able within my own unique set of gifts. I may not be able to live your way, but I can live my way, and that’s all I ask.
Chime in, dear readers! What do you do well that you’re proud of?