I wake up in the morning and there it is, reverberating around the inside of my skull: “It never gets any easier, does it?” The words spoken to me yesterday by a man with a big Labrador dog lying across his feet. He’s an important and successful man, and he’s been blind since birth. The corporate entity for which he has recently started working sought him and brought him here, and then ensconced him in the prestigious corner office with all the windows through which he cannot see, but they have not yet produced the talking computer necessary to his work. After repeated inquiries to his superior, said superior sent him a nasty message centering on “Haven’t we done enough for you already?” The director went over his superior’s head to the top of the corporation and got both his computer and an apology, but the question still echoes: It never gets any easier, does it?
I am across from this man, sitting in my wheelchair and trying not to cry. “Look,” I want to yell at the world, “I’m smart and I’m experienced! I’ve got a lot to offer and I want to work—let me! I’m valuable and I want to be productive, too!” And you don’t even have to pay me; I’ve got all my “entitlements”—Social Security Disability, Medicare, Medicaid, HUD subsidy, Food Stamps, HEAP. I even have two computers, one for when I’m bedridden and another one in the living room for better times.
This man’s corporation won’t hire me because I’m not credentialed. I’m not credentialed because I have a minor learning disability that makes me unable to learn from textbooks, so I learn from people. I ask good questions and then listen while people tell me things they didn’t intend to. Then I file federal complaints and multimillion-dollar government agencies find themselves under investigation, prosecution and perpetual oversight. And the people are served—the citizens who are supposed to be getting services finally do get them at the level required by law. It’s called being an activist, which—according to my friendly local politician—politicians hate.
But this man’s office is in a large office building in a large office park. I wheeled in the front door and found myself confronted by a large flight of stairs that went up and a small wheelchair lift that went down. I needed to go up, so what the hell was I supposed to do? The lobby was between floors so there was nowhere I could go to ask. I went outside and wheeled around the building. It has entrances on all four sides; only the front door is wheelchair accessible, i.e., has no threshold. So I go back in the front door and sit and wait until an able person comes in. (If you’re going to survive as a disabled person then you have to learn patience; it involves a lot of sitting and waiting.) When an able person arrived, I asked for her assistance. (If you’re going to be disabled then you jolly well better be able to talk to strangers.) She went in search of a solution and came back to tell me to take the lift down to the basement and then transfer to the elevator to go up. They couldn’t have put a freaking sign on the lift?
Three blocks away, the HSBC bank has a concrete ramp that invites wheelchair customers, but there’s no automatic door opener. Trying to exit the building, the massive handle on the door struck my upper arm, leaving me cut, bruised, swollen and in need of $300 worth of physical therapy that the bank wouldn’t pay for unless I submitted more paper-work than it was worth. And my insistence that they install a door opener has been ignored. “It never gets any easier, does it?”
It’s different people and different places every day but, no, it never gets any easier. I live in a society that doesn’t want me. I am smart and insightful and wise and occasionally funny, and I am unwanted. God and I think I’m really valuable, have a lot to offer, and should be served. That is not an opinion shared by my sisters, my church or my neighbors. My sisters, at first, found that our parents gave me more attention than they got and, at last, that I couldn’t go with them to “shop till we drop,” so why bother with me? My church’s mission of social justice did not include offering to drive me and my wheelchair to church, or visit me at home when I was too sick to get to church. My neighbors? HAH! Because I am on Social Security Disability I am so poor that I have to live in a HUD-subsidized high-rise apartment building that is federally segregated to only include people who are old and/or sick. There’s a thrill for you.
It never gets any easier but what does change is that I am getting older and sicker and too tired to fight back. And if I stop fighting then how will you know that we are here? I keep thinking about Horton and all the little Whos in Whoville. You have segregated people who are disabled, denied us transportation to locations, and denied accessible locations were we can gather, consequently we can’t get enough of us together to yell loudly enough so that you can hear us.
Yesterday I wheeled downtown to the “Occupy Syracuse” site (see also, “Occupy Wall Street”) and on the way home my wheelchair almost ran out of power. I had to keep turning the speed down to conserve power until I was creeping across intersections at a barely perceptible rate. I didn’t know if I would make it home, and there was no one to call for help. All I want to do is live, but it never gets any easier.
Some days it hurts more than I can bear.