My Life As A Disabled Teenage Girl
Tensions obviously still exist between the majority and minority groups. Between whites and blacks. Between men and women, straights and gays, rich and poor. Discrimination, though diminished over past centuries, still exists, and people experience it daily. I know this firsthand by simply being a member of society but also by being a member the group most quietly discriminated against of all time: the handicapped.
And I really hate to admit it because it seems so overly dramatic. “I am an oppressed and suppressed member of society!!!!” It just feels silly to say. But as I’ve gotten older I have to believe that to some extent it is true, mostly because people like me are just not thought about.
I am 18 years old. When I was born, I looked like some sort of strange species of Amazonian frog from various orthopedic deformities. My joints were temporarily remedied with casts and surgeries and metalwork. These issues and others to arise later were discovered to be caused by some rare form of muscular dystrophy whose main symptom is significant muscle weakness.
Elementary school was really a happy time for me. I knew I had a disease, but for the most part it just caused me to receive special attention, like getting to sit in a chair in class instead of on the floor or getting wagon rides down the long hallways instead of walking. All the other kids were super jealous; I was an elementary school superstar. I knew I was a little weaker, but I thought I walked fine until one day a kid told me I walked like a penguin.
As life went along, I became more aware of myself, more self-conscious, and more afraid of a future that seemed dim at best. At twelve I had surgery for severe scoliosis that finally took away my already fleeing ability to walk. Three months later I had surgery on both my feet to try and get myself back to walking, followed by years of physical therapy. But it never happened; I never walked again. The back surgery caused hip pain that progressed until I had to get one replaced just a few weeks ago.
Throughout this whole process, though, I have become a fighter. It has made me perceptive and focused and brave and insanely stubborn unlike anything else could have, and for that I’m thankful. Without three and a half feet of surgical scars, I wouldn’t have the sheer force needed to fight “the man” like I have to do on a seemingly daily basis.
During grade school, whenever I wanted to go on a field trip, it was always a huge ordeal. All it took was getting a bus with a lift, but many times the teachers in charge didn’t want to put in the extra effort it took to request one. And practically every single time they finally did get appropriate transportation, the lift would be broken or the bus driver wouldn’t know how to work it. I’ve had to become my own expert on bus lifts so I could tell them what to do.
Public transportation in Knoxville where I live and go to school isn’t better. The University of Tennessee campus has a bus set aside for people with disabilities to call when they need transportation, which is great. But they won’t let me on the regular bus because of this other bus set aside. Once it was raining, and as I was passing a bus stop on my way to the complete other side of campus, a regular bus pulled up. I couldn’t believe my luck. I tried to get on, and they told me, “No.” People like me had to call the Access Bus even though this regular bus had a perfectly fine lift. Calling the Access Bus often leads to a 45-minute wait in the rain as I watch the same bus for regular people pass by over and over.
Whenever I need anything – tickets to a concert, a hotel room, accommodations at work, accessible housing at my college, permission to have a roommate like everyone else – it’s a fight. It involves countless phone calls, meetings with higher-ups, and my serious persona. People usually give in because I think they just don’t want to hear from me anymore.
When I complain about having to make phone calls, for a minute it sounds silly. But you have to understand how it makes people like me feel to have to fight constantly for basic accommodations. There is a “special” way to go about everything for us, and it’s hugely segregating. The intention is accessibility; it’s all to make sure that the handicapped get what they need. But usually what really ends up happening is that the resources simply aren’t there to make something happen, or “accessible” policies are formed by people who don’t understand what we need or that we have the same desire for human interaction as everyone else. “I’m sorry, the doorway isn’t wide enough.” “I’m sorry, our only handicap seats are in the very back.” “I’m sorry, there is no way for you to sit with your friends at the football game.” “I’m sorry, our policy is for the handicapped to live alone.”
I’m sorry, but I don’t want to live alone. I don’t want to be separated. I am just a normal girl. I love getting dressed up and going out with my friends. I love sitting in my pajamas listening to music and watching TV all day. I’m addicted to Facebook. I’m slightly obsessed with cute animals. The only thing that makes me different is my physical ability, and because of that society makes me feel marginalized, like a second-class citizen not worth the effort. Like a burden.
I shouldn’t have to feel guilty for my disability.
But really I don’t blame people. Society just isn’t used to thinking about the handicapped as human beings with capabilities and feelings. In the media, there have only been a handful of round, dynamic wheelchair-bound characters (Most of which are male, but that’s a whole separate discussion). Out of sight, out of mind. It’s time for us to get more exposure. I feel like race relations are generally pretty good right now, and this country is finally starting to view the LGBT community as a set of legitimate human beings. So now it’s our turn to be heard and experience a little bit more justice.
All I’m asking is for people to think. Please don’t park in the handicap spots or in front of curb cuts, because they’re there for a reason. Please don’t use the handicap bathroom stall unless it’s the last one left. Please support cheaper healthcare. If you’re in a full elevator, and someone else really needs to use it, please take the stairs. Please don’t stare. If you meet a handicapped stranger, please don’t ask about their disability if they don’t bring it up first. Please don’t demand to help someone when they don’t want it. And if you are lucky enough to be a person in a position to make some serious change to accessibility policies in situations anywhere, please be aware of what real disabled people really need and really feel; don’t just do the least possible amount of work to make it all legal. The Americans with Disabilities Act is great and all, but it’s not the whole story. Please think.
Most of all, I ask that you be grateful. Most of you reading this are likely young, able-bodied, generally pain-free individuals, and I ask that you thank your lucky stars. Just think about all the things you couldn’t do if you couldn’t walk. Think about all the help you’d have to ask for and all the pride you’d have to swallow. Your life is not so bad, and neither is mine. Things could always be so much worse. But please, I’m begging you, try to think about others around you and help make their difficult lives a little bit easier.
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Home is a place that you’ll spend a lifetime wanting to leave until you do for the first time. Then returning and leaving again will feel impossible.
1. Never, ever, ever, ever over analyze someone’s message to you.
And then he was gone. He couldn’t handle the secret I had forced him to keep anymore.
2. Your middle school French teacher.