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. TC mark

image – taberandrew

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My Life As A Disabled Teenage Girl is cataloged in , , , , , , ,
  • Aelya

    This puts every other article about the woes of TC writers to shame
    Chin up, soldier. This was excellent.

  • Chloe

    This is wonderful and well-written. It was a privilege to read. Thank you. Keep writing and keep fighting.

  • Ryan O'Connell

    this was so amazing

  • Anonymous

    My estranged mother parks in the handicap spots everywhere. At the gym, even. This article makes me want to print it off and drop it in her mailbox. People don't care enough to see the other side of things, and it's maddening.

  • http://twitter.com/elyseholladay elyse holladay

    Well said :)

  • http://twitter.com/simbelsim simbel

    Beautifully written. People who try share their woes on TC should learn from you how not to be a whiny little bitch, even though you'd have the most right to be one of them all.

    Thank you for this article and hopefully someday you'll have to fight less!

    • skittle!

      I agree that it's nice that she's not whiney, but it wasn't very well written at all.

      • Guest

        Even though this is article might not have been well written, the content and the message was strong enough to make up for it.

  • Rans

    wwwwaaait. it wasn't well written, it wasn't beautiful. isn't this what her whole article was about-special treatment?

    • Guest

      so?

  • La_ghiga

    Thanks for your words. I agree with you, and I will keep fighting on your side… Even if I'm in Italy, the same tings occurs. I brought a friend of mine at a concert in front of the stage, holding her between the crowd, not in a separate place but in the middle of a mess. I will never forget her eyes.

    Keep on fighting! I will! Always!

  • kristinjames

    i really liked this. i got a small taste of what it's like to be disabled when i broke my hip last year. the break was in a way where i couldn't have a cast and before i could use crutches, i had to use a walker. i was blown away by the amount of people staring, people averting my gaze and random people asking me what was wrong with me. it completely changed my viewpoint on life and i can't imagine having to go through it every day for the rest of my life. i think it's awesome that you wrote this and  i wish people with disabilities could just be treated like regular people.

  • HotDogHotline

    I'm just a random nobody, but I'm glad you're here on earth. Without you, the world wouldn't be as good of a place. Thank you so much for being who you are. The world will never be able to thank you enough.

  • Guest

    Thank you for posting this. I'm going to be sharing it with many people.

  • Eli_Ash

    Thank you for this– your voice is solid and charming and I hope this opens a lot of eyes and hearts.  Your closing sentiment really hits: graciousness. You're right.

    Loved this :)

  • Ummm

    just because I'm CAPABLE of taking the stairs doesn't mean i should be required to.

    • Guest

      dick

    • http://twitter.com/sophiakiona Sophia Anderson

      Shut up, god.

      • Ummm

        No but really. I would obviously wait for the next elevator if a handicapped individual was waiting for it there wasn't enough room, but really? Commanding me to take the stairs simply because I can use my legs? Even if I can use the stairs, the elevator is still for everyone.

    • http://thefirstchurchofmutterhals.blogspot.com/ mutterhals

      Just take the stairs, it's good for everyone. EVERYONE TAKE THE STAIRS AT ALL TIMES. IF YOU CAN WALK, TAKE THE STAIRS.

  • http://www.facebook.com/profile.php?id=1363230138 Michael Koh

    Can we meet? I'd love to have a cup of coffee with you and talk about life

  • 1x

    damn well you look pretty good to me

  • Vikki Vance

    Thank you so much for writing this.  I am a 26 year old disabled lady, chock full of surgeries (feet, hip replacements, metal bars, neurological disease, oh my!) and you speak the truth. 

    And you're right.  As frustrating as everything you named (and so much more) is, people just don't understand.  They don't have chronic pain and don't have to deal with stuff we do, they can't even fathom it.

    We are soldiers, and we kick ass everyday that we have a smile on our faces :)

    • DisabilitiesCanBeUnseen

      Great article and some excellent points; but I see a major issue that i think you have overlooked;

      It's important to remember those of us with hidden disabilities; Just because we aren't in a wheelchair doesn't mean we don't need to take the elevator, use the disabled stall in the bathroom or park in a handicapped spot.

  • deb

    My bro-in-law has been in a wheelchair his entire life, and while I'm sure “easier” is relative – I do think he has an easier time living here in California than in other places.  There seems to be a mentality that wants to be accommodating. And since knowing him and witnessing his struggles has made me more aware to others in similar circumstances and I always try to help.

  • cnlaird

    beautiful, well-rendered. thank you.

  • NennerZ

    i'm glad someone like you wrote this. i'm not as bad off as you, but i've had operations on my knees from ages 3 to 11 just about twice a year. i had blounts disease. it's sickening to remember how “grown adults” would watch me with scorn as a child because my legs bent every time i grew and would talk about me as though i can't hear them. right now i'm still going through surgery and therapy but this time on my hands. my legs aren't 100%, but it's better than nothing. if there was anything i could do to help, i would. <3

  • jt

    This is seriously gorgeous writing.

     I work at Disneyland (my glorious post-grad job) and I'm an usher for one of the park's nighttime shows.  We have sections reserved throughout the viewing area for guests with disabilities and wheelchairs but almost always they become overcrowded and are by far one of biggest problem areas for various reasons and I always bitch and moan if I have to oversee one of these sections.  Last night, there was a girl in a wheelchair who got put in the back because space was extremely limited.  I watched her wheel around in the back trying to find a spot where she could actually see something through the tower of people in front of her throughout the duration of the show.  I did nothing.  I could have easily taken her around and helped her find a better spot.  I could have written her a pass for another attraction.  I could have given her tickets to the next show.  I could have done anything and I did nothing because I didn't feel like dealing with it.  After reading this article, I have gained empathy for the people in my disabilities section and feel moved by this article to alter my approach.  I will definitely remember reading this piece the next time someone with a disability gives me grief about not being able to see and will definitely work to make it a little easier for them.

  • Duke Holland of Gishmale

    Arghhh! Seriously?! But I fucking love parking in the handicapped spaces! Sure, I can park further out and use my legs more, but uggghhhhhhhhhh. Using your legs sucks-such a burden.

    • Marianela D'Aprile

      this was unnecessary.

    • QueenofIndie

      Wow. I actually had some respect for the people like you of the internet while I was reading the comments for a moment. This was one of those times when it's slightly unnecessary, don't you think?

      • Duke Holland of Gishmale

        You know, I also almost had respect for people of the internet as well. Then your dumb ass came in here and ruined my day. I was being sarcastic, you fool.

  • QueenofIndie

    This might just be the most beautiful piece I have read on ThoughtCatalog. Elegantly written and with the perfect amount of push, you've just made me- and a lot of other readers- really rethink the way we live.

  • Catherine

    I agree with your message completely about disabled people and the difficulties they suffer. I commend your strength in the face of adversities and speaking out to raise awareness. The only issue I take, however, is with your one very small sentence: “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.”

    Please do not undermine the struggles of other people just because on the surface it may appear to you that things are “improving” for them. Just because Obama is the president doesn't mean racial discrimination has largely resolved itself. Just because Ellen is a celebrated TV personality doesn't mean gay people have triumphed and no longer face oppression and marginalization. In the same way it frustrates you and other disabled people to see the authorities doing the bare minimum to meet legal requirements for disabled access, it frustrates every minority group when the public assume that they have now “done enough” and therefore you no longer have a right to whine about your problems.

    I'm not accusing you of intentionally talking down the struggles of others to place emphasis on your own. The validity of your article's message is not overturned by this one small point that I do not agree on. But I just wanted to draw attention to the fact that pain and suffering is subjective and for that reason, it is not a persuasive way to argue your point by deeming one person's suffering less worthy or justifiable than another's. It is hurtful to read and clouds the very positive and important message that you are seeking to convey.

    • Lindsay Lee

      I know exactly what you mean, and I'm very sorry I came across that way. I debated keeping that sentence in there. I only meant to say that other people who are usually thought of as members of minority groups have made serious, real successes, and most people are aware of the issues. But of course their struggles aren't over, and probably won't be for a long time. And of course they still experience discrimination and prejudice. The main point I'm trying to make here is that when people think of minority groups with issues to be solved, they don't think of the disabled; they think of blacks and Hispanics and gays. We've had lots of successes, but people still aren't aware of us, and we as a nation and world are a long ways away from having the option of a semi-normal life available for most disabled people. If the black community and the LGBT community can create legitimate change for themselves, why can't we?

      I probably should have changed the wording. It sounds like I'm saying all this social change has to happen independently of each other: “first blacks, then gays, now it's our turn!!” But it all happens at the same time, as it should, and no one's struggle is more or less important than anyone else's.Side note to everyone else: thank you so much for the incredible comments! You have no idea what they all mean to me. Seriously.

  • humblecore

    Ugh, I love this so much.

    I've been a wheelchair user my whole life, and I agree that it's mindblowing how much your outlook and personality can change from childhood to adulthood. People with physical disabilities basically hide in plain sight – we look so different that people can't help but notice us, but that difference also keeps us isolated and constantly having to prove that we deserve to be treated like equals. We're just people, y'all. We eat, drink, smoke, fuck just like everybody else, only sometimes we need a wider doorway to get to the toilet to puke.

    Anywayz, it's so refreshing to see a piece like this in a mainstream place like TC (yeah, I called it mainstream! and what?) Maybe a recurring feature? Or at the very least, more contributions from this author. I'd be into it.

  • JM

    My thoughts are with you. I know young individuals that are wheelchair bound and it's so saddening but their spirit is never damaged which amazes me. They have good days and bad days but they still keep rollin. Nothing in my life compares to yours, I am not wheelchair bound, but there are days where I have to use a cane and for other reasons and I'm not 30  yet.. I feel the aches and pains of a 40-50 and 60 year old… I feel it daily. I have been discriminated against and get the “you're too young to feel this…” which aggravates the LIFE out of me. My heart goes out to you and all the struggles you have faced but I commend you for being able to write this and to keep going, no matter what life throws at you. Thank you!

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