I was about six years old when the Americans with Disabilities Act passed twenty years ago. I was born with spina bifida and hydrocephalus, which means that I had an "open spine" and "water on the brain." The scientific realities and medical possibilities were much different back then.
With spina bifida, they told my mother that I'd probably be born dead. Then if I lived it'd only be for a few months. And as the years went by they weren't very comforting about my chances. I'm supposed to be extremely dead right now.
They told her that all patients with spina bifida are born paralyzed either from the waist down or neck down. I wasn't. Go me!
Once I was born I needed surgery immediately to close my spine and to place a shunt into my head to direct the fluid into my abdomen to be absorbed. You would not guess I was born with an overinflated head, what with my immense charm and unparalleled modesty, but I was.
Back then it was a trickier surgery, so I'm told. Nowadays they can do it in utero. That's an exciting advancement and it could lead to less potential paralysis in people with spina bifida, though I am not sure how many of the surgeries are actually done in utero yet.
Mom says she didn't even get to see me for awhile after I was born because of all the surgeries and recoveries. Even then she didn't know how long I'd actually be in her life.
She tells me that the doctors wanted her to have an abortion. She's a conservative Catholic and strongly anti-abortion so she rejected that. She's the kind of anti-abortion person who thinks women should die before they have an abortion to protect their own lives. Noble but completely insane. On the other hand I've spent my whole life dealing with doctors who are consistently wrong on everything, so who really knows what to think?
Physical therapy for my legs started at a very early age, and I only vaguely remember doing some of it when I was that young. Doctors and nurses convinced my mom to forego a wheelchair and get me into crutches since I wasn't born paralyzed - even though the spina bifida weakened the nerves in my lower extremities and I didn't have enough leg strength to walk without crutches. For awhile.
After those surgeries at birth and an eye surgery, at thirteen I had tendon surgery. It was awesome. I got to hallucinate on demerol for the first time and wear a full lower body cast. There was the pain and all but at that point in my life it wasn't like I hadn't experienced any of that.
Later, after I recovered from that, we set up therapy stuff at the house to try to help me build leg strength. I found that I could walk around short distances without crutches and I wanted to see if I could build on that and make it longer distances. We built a pulley type thing where I grabbed onto something that was attached to a rope and followed it down the hall. Totally makeshift but it worked.
I got to the point where I could walk a little further and then the scoliosis happened followed by paralysis from the waist down. Pretty good timing if you're making a black comedy.
The only thing that would make it darker was if my parents discovered I am gay at that exact point in my life.
Believe it or not, that is actually part of the point of this little antihero fairy (heh heh) tale.
You can't survive any of this stuff without humor and without screwing with people's heads for laughs. It was simply too much to take it all so seriously, as they say. I wasn't a particularly troublesome teenager or anything, but I was kind of abrasive.
I was already the guy in high school who didn't do homework but aced all my tests. I didn't even really participate in class out of shyness... until government class. Cue mischievous laughter. Note to the gods: don't put a liberal crippled faggot in the same room with a libertarian government teacher who has to read from outdated books.
This is a guy who taught us that people are poor because they choose to be and that the Americans with Disabilities Act is an awful law that leads people to find loopholes in it and game the system. I guess the same way that the new health care law is bad because insurers are already trying to find ways to keep sick and dying newborns from getting care.
I gotta hand it to him though, it was probably difficult to teach this stuff with a guy in a wheelchair sitting at the front of the class.
Sorry yo, were my "special needs" getting in your way? I didn't realize that accessibility into and out of buildings was such a burden on the American taxpayers. The world would be better if we only allowed stairs for buildings. Sure, lots of people would die in a fire but it would be cheaper for Americans.
As I've said elsewhere, I don't play. To combat this small-mindedness, I occasionally wear shirts that say "Keep staring I might do a trick" and other such jabs at my peers. Usually it gets red faces but, especially from the younger generation, it gets comments such as "DUDE! That is the most awesome thing I've ever seen!" I still don't understand why older people stare and why people my age stare but 13-17 year olds think I'm awesome for my big "Fuck You's" to everyone on my t-shirts.
Then of course there's the terrorism I inflict upon poor old people at Wal Mart, which is pretty much our only grocery store nearby. I go with my sister sometimes to get my groceries. When it's packed out with people and the number of those staring reaches critical mass, she'll slap me across the face and yell at me, "KEEP UP, RETARD!" to the stunned faces of the onlookers. Sometimes it's, "God, mom should have aborted you!" So fun.
People don't seem to want to ask why I'm in a chair in any serious way. They'll hint at it or shyly start to ask but people act like it's better to just pretend they know everything. In Catholic school in third and fourth grade, I was picked on by kids a lot for being handicapped and poor in a private school, and kids used to step on my feet and say "the teacher told me you couldn't feel it anyway."
Sometimes people stare, or ask me awkwardly what happened and I tell them, "It's just a flesh wound!"
I occasionally have my faith in humanity restored when someone says, "what're you gonna do? Bleed on me?"
Mocking others is an awesome coping mechanism.
Sometimes all you can really do is joke though.
Get a job? Not so much.
Have full access to buildings? Not so much.
Mock the stupid? Si.
I've actually had a few jobs but they were tough to get and, honestly, not the type of job I'd really strive to get. I don't want to be stuck tearing tickets or working as a cashier because nobody sees me as intelligent or useful enough to do anything else. People want to leave me with the smallest amount of work possible at those jobs and I feel like I am capable of doing more.
People aren't supposed to discriminate against handicapped people and they're supposed to have accessible workplaces because of the ADA and other laws and quaint things of that sort but it only works in theory. Just like we've seen with the new loopholes in the health care law, people find new and exciting ways to not hire capable handicapped people.
For me, there's either no way I can reach something I need to be able to reach to do a job, or the area behind the counter at wherever is too narrow for my chair to fit, or they're "not hiring" even if they have a "now hiring" sign, as if my wheelchair makes me incapable of deciphering the difference between the letter W and the letter T.
Even with accessibility, some places just say we can't have wheelchair ramps here because of safety reasons, or whatever. We can't have these narrow aisles in bookstores wider. I can't tell you how many times I've gone in a bookstore and I've had to pick up and move a display that was sitting right in front of the door because I couldn't get inside the store. So I had to awkwardly draw attention to myself.
This is if I can get inside at all. Now in 2010 there are still places here that have too many stairs or other things that block my entrance. I can't go some places without help and honestly it hurts my pride a little bit.
I've been through tons of surgeries, paralysis, depression, anxiety, serious issues with being gay and having a religious family. After all of that I managed to move out on my own when I was nineteen. I live in a low income apartment by myself and I don't need help of any kind whatsoever. I cook and clean (as much as any single 26 year old male does anyway) and I finally got my license when I was nineteen. Learning to drive with hand controls was difficult but I have my license and a truck now.
The idea that I'd need assistance to get inside buildings is sort of a punch in the face. It's like someone wants to knock me down a peg. And then the joblessness is another insult. Do I really deserve to have a hard time becoming a ticket-tearer at the movies? You take a ticket and rip it in the perforated middle and you hand the bar coded part to the customer.
I should be able to do more with my life, and I'm willing, so why aren't the laws enforced strongly enough to help me out, when they obviously work for the people who aren't disabled but only want to game the system? How is this fair?
I just want some semblance of normalcy and these laws ALREADY EXIST. It's been twenty years, let's start improving lives for people who could use it.