mercredi 3 octobre 2018
Alexis Wineman: Being Called the R-Word by a Teacher Completely Changed the Course of My Life
To the Girl I Used to Be,
I'll admit that this isn't a letter I ever thought I would be writing, yet, here I am. I've been thinking about you quite a bit recently, and even though that might be self-centered (considering I'm you 12 years in the future), my mind can't help but wander back to you from time to time. I think of the awkward times in middle school and puberty in a different light than most people I know. Fellow peers of mine talk frequently about how they would love to go back to middle school and relive their preteen years. I think you can agree with me when I say I definitely don't feel that way.
This past year for you has been nothing but hell. Bullies have become crueler, and you're finding it impossible to keep up with school. The toughest challenge, though, is one new word that has come into your life and taken over everything: autism. It's a word that has brought your family so much relief but has caused you nothing but headaches and confusion. After all these years, your family finally has an answer and can now find ways to help, but to you, the doctor could have replaced the word "autism" with "burden" and it would have translated just the same. Still, through all the meltdowns, screaming, nightmares, and crying, you have one thing that has kept you going, that bright star that you keep running toward: your future as an astronaut.
Autism: After all these years, your family finally has an answer and can now find ways to help, but to you, the doctor could have replaced the word "autism" with "burden" and it would have translated just the same.
To this very day, I still have not met anyone who is as excited about the future as you are. I can still see the space posters you lazily hung up in your bedroom despite mom's protests of using Scotch tape on the walls. I can still quote the space documentaries you would watch as if they were major box office films, especially your favorite one, the Hubble telescope 15-year anniversary DVD (Hubble is still up there, by the way! It's now 28 years old!). I can recall the taste of the freeze-dried ice cream you would sit in our room and eat in order to "train yourself to like it" so you wouldn't complain when the time came for you to survive off it. I remember that one of the best gifts you ever received was the blue NASA jacket and hat your grandparents got you at the Kennedy s Space Center. They told you that if you were going to be a "hot shot space woman," you needed to dress the part! You wear that thing as much as you can and become paranoid about eating in it. It's so precious to you that you don't want to ruin it.
You have dreams, and you're willing to put up with the bullying, stress, lack of sleep, and agonizing pressure building in your skull. And every time the dam bursts and the tears and screams erupt, it still doesn't matter to you, just as long as you keep moving forward.
The future will be better, you chanted to yourself as that girl punched you in the stomach in the hallway.
The future will be better, you claimed as that boy broke your glasses with a kickball and laughed at your bleeding nose in gym class.
The future will be better, you promised as you sat through another IEP (Individualized Education Program) meeting where everyone said they cared about your best interests yet never acknowledged you were even there.
The future will be better, you whispered to yourself as you went into what seemed like the millionth meltdown that week.
But soon that optimism for the future is gone. You don't look up to the stars and see your goal. In fact, you don't look up at the stars at all, do you? The hope that you held only a little while ago has been ripped out, and the remaining void is rapidly filling with the negativity that you've been struggling to overcome. I remember the event that took your hope away so clearly that sometimes, I think of it as an eerie spirit haunting me rather than just a memory from my childhood.
Science class was once your favorite subject, however, the teacher we had certainly didn't care. Of all the people who would want to encourage you to expand your scientific potential and pursuits, it should have been a science teacher. But you learned the hard way that adults can be bullies, too. The only difference between her and the gallery of bullies you already had was that you actually valued what she had to say. But this woman seemed to get a high from your misfortune. She never followed the IEPs that were set, her excuse being that you didn't look disabled. She failed you on multiple assignments because of it, even though she later admitted that you could answer any question she threw at you. But you continued to press on, thinking that once the class reached the space unit in the textbook (which you had already read), your time to shine would arrive and finally win you this woman's respect. Until then, you would keep your head down and continue to absorb the hurt this was causing you.
You never suspected that the day the space unit began would become one of the worst days of your life. The teacher noticed your head was up, your hand eagerly raised, your voice loud and as clear, as your speech impediments didn't prevent you from answering question after question. She saw all of this, but instead of being excited that you were getting involved in class, she saw it as a problem. She held you behind after class and asked about your shift in attitude. You told her about your vision in grandiose detail, what you wanted more than anything. You were going to be an astronaut and be the first woman on Mars. You were going to be someone who would do things that made people proud.
She stayed quiet for a beat after your explanation. Then, she destroyed you with just five words: "Retards don't go to space."
Hope became extinct that day. I wish I could tell you that the impalement of those words eventually goes away, but I can't. You didn't tell your family what the teacher told you, although you knew they suspected something, considering all of your space and NASA memorabilia was soon shoved into the back of your closet. Your vision for the future changed to reflect what your bullies said rather than what you wanted. Instead of looking down on Earth through the INSS window, you were now accepting the idea that you're useless. The hopeful version of Alexis was murdered by those words, and the body was soon possessed by fear and self-hatred.
Your teacher was wrong. Your bullies were wrong. You are worth more than you could possibly know. And you do have a future.
You grow numb and quiet. You're tired, but your sleep consists of nothing but nightmares of being God's failed creation. After all, God has a plan for everyone but lied to you about yours. You not only take the bullying, but you start to see it as something you deserve. You see it as your punishment for being different, as if it's the only thing you're good for. You even welcome it with open arms, because no one hates you more than you hate yourself now. You don't eat much anymore. You see nothing worthwhile when you look in the mirror. You feel withered before you had the chance to bloom. Your grand plan now is to drop out of school and live with your parents forever.
You're wrong, though. Your teacher was wrong. Your bullies were wrong. You are worth more than you could possibly know. I'm writing to you because that moment in that classroom changes your life more than you can imagine right now. And you do have a future, Alexis. Granted, it's not one that you ever thought of or planned for, but that doesn't make it any less bright.
Thanks to your family's persistence, love, and support, you start to feel again. You get involved with things you thought you were not worthy of, like cheerleading and drama. You become cheer captain and a senior member of the cross-country team. You slowly find value in who you are, and though it confuses you at first, you find yourself smiling more and more. You start to make friends - real, true friends and you don't feel so alone anymore. The meltdowns aren't as frequent as they used to be, and you start to learn things about your autism and ways to cope with it instead of letting it define you. You learn to love yourself again.
Your plans change so many times in the coming years. Part of me doesn't want to tell you the unbelievable things your future holds. Nobody likes spoilers, after all! But I will say that you do graduate high school. You even earn a college degree. You live in an apartment that you pay for through a job that you love and work hard at. You have opened yourself up to amazing opportunities, and if there are times where those opportunities are few, you've learned to create your own.
The thing that still surprises me is that many people have found worth in what you have to say. You become a voice that people want to hear. You end up traveling across the country, sharing your story, and telling those who feel just as hopeless as you do that they are the ones who decide what their futures will be, that no one has the power or right to tell them that they're unworthy to dream. You become an advocate for people with special needs. Through the many speeches and talks I've given, I've found that there are people who, just like you, have been told not to dream, not to get their hopes up for a future they "can't achieve." I agree that living with special needs is very difficult and that reaching a goal is 100 times harder than it would be for those without special needs, but that doesn't mean they should be barred from trying.
Throughout everything - all the struggles, challenges, and pain to get to where I am today - I've realized that I've lost sight of something very important, and for that, I really need to apologize to you. For a while, I thought I'd left you firmly in the past. I wanted you to fade from existence because I emerged from the void stronger than before. But that's not true. You still exist within me. I haven't overcome you or outgrown you. You didn't stay in the past, because you were never supposed to stay there. There are still times when I become the scared girl I remember you being, but that's OK. You can't overcome fear or anger, and you certainly can't overcome autism, but you can't let them define you, either. You can, however, find ways to pick yourself back up and get back in whatever fight that got you down to begin with, because you'll find out that no matter the situation or obstacle in your way, you can and will rise to the challenge.
Word of warning, though: it will never be easy. People will continue to doubt your abilities, and that teacher is not going to be the last person to call you "retarded." But what happens in these coming years is for you to decide. No one has any power over you or what you do.
I love you, Alexis. I am proud of you. And I'll try to make more of an effort to remind you of that. It might sound conceited, but we've spent far too long hating ourselves. I refuse to hate myself anymore, not after seeing that I am capable of amazing things. I cannot wait until you see it, too!
Love,
The Woman You Are Now, Alexis Leigh Butterworth Wineman
Alexis Wineman is an autism advocate and author who was named Miss Montana in 2012. As the first contestant with autism in the Miss America pageant's history, she was honored with the "America's Choice" award at the pageant in 2013. She is also a motivational speaker at conferences around the US.
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