Friday, September 20, 2013

An Open Letter to the Expectant Mother

Dear Expectant Mother,

I have a disability. I expect you’ve been told that I am the “news every mother to be dreads”. It’s not your fault you feel this way. The medical community has trained you to think that the worst has happened if your baby is born and found to be “like me”. Pregnancy message boards and magazines, instead of telling you that if your child does have a disability, he or she can still be happy, assuage this concern by telling you that “only one in thirty three babies is born with a birth defect”, according to the CDC. It’s not your fault that the doctors and nurses have presented the future as bleak by default should your baby be “like me”. They are merely repeating what our culture has told them for so many years. But before you lose sleep over the possibility of a life like mine, please listen to me, if you love your baby as deeply as you say you do. Do not be afraid. You have every right to be a little apprehensive should your child be disabled, because you will need to learn new things, and be prepared for the occasional unkind question. But please, do not be afraid. It pains me to know that my life, the life I love, is used as a scenario to scare you. I am good. I am happy. I am alive. And if any baby born to you has a disability, that baby can be the same. I dream of the day, when disability or not, the doctors will tell you, “Congratulations, you’re pregnant, and I know your baby will be beautiful”. I hope they will teach you to see someone like me as one of the trillions of enchanting human variations that may come to be as a result of you becoming a mom. I hope that they will acknowledge the extra wit, humor, and patience it requires to raise a disabled baby, but also acknowledge that if it happens, you will meet some amazing people. You will be exposed to a brilliant culture, and be able to know things so many of your “mommy friends” never will. I hope they will teach you to fear things like unkindness, selfishness, and lack of respect in your child, instead of disabilities. And if they don’t teach you, I hope you will teach them… because having a good heart is far more important than being able to walk.

If you have a baby that is so called “normal”, but knows nothing of treating others with love, you are in for a far more difficult life than another mother, whose baby will grow to be an exemplary being with a disability. Think hard about what you should truly be afraid of. Then, instead of wishing for a child who can walk, and talk, and see, and hear, and learn like all the others, wish for one who is kind, generous, compassionate, and alive… because any mother with a child like that is the luckiest mommy on earth. I wish you luck and thank you, because you have the most important job in the world. And I hope that if you see me pass by you on the street, you will notice my rattling, vibrantly decorated wheelchair, and then notice that I am a happy person.  I hope that you will close your eyes, and wish with every little piece of your heart, that the baby you’re expecting will be happy too. And then, you will realize that maybe; you want a child like me after all.

A “Grown-Up” with a Disability

Tuesday, September 3, 2013

If I'm Your Inspiration... Get a Hobby!

I do not look like a hero if you ask me. I don’t have any magical powers. A cape would get caught in my wheelchair. It takes me a half an hour to get the milk and pour it into a cup, and my attempts to get a comic book written about me have proven fruitless. However, in certain circles, it seems that people think me to be heroic. I was recently rolling on campus with some new friends who also use powerchairs when we were stopped by a nun who excitedly informed us that we were her heroes and it “was so cool to see us”. While I am glad to bring light to someone else’s day, I cannot understand what about a person in a wheelchair doing ordinary things is so inspiring. I was not out rescuing a cat from a tree, giving CPR to a dying person, or making an intellectual breakthrough. I was out getting ice cream… at 8:30. I can only imagine the legion of media coverage we would have attracted had we been getting ice cream in the dark.
I know that people mean well when they tell us we're inspiring. But intentions aside, putting people with disabilities on a pedestal for doing regular things indicates a serious problem of low expectations. Heroes are people who do something unexpected, extraordinary. I should not be considered a hero for doing ordinary things that everyone has the right to do. If society does not expect me to leave my house to get ice cream, then therein lies the problem. Just like those without disabilities, a girl going to the grocery store in a wheelchair should be just as unexciting as a girl going to the grocery store on her own two feet. Calling a person in a wheelchair a hero for getting up in the morning reinforces the stereotype that we as people with disabilities should be bitter, angry, couch-dwelling hermits. I have been known to sit on the couch and kill a bag of chips every now and again, but just like able-bodied people, my expectation is that yes, I will leave the house, go to school, hang out with my friends, or go shopping in a thoroughly uninteresting way. And I hope that one day the notion of any of this being inspiring will be laughable.
 I can't wait to have a deathday party for the piles of memes that applaud disabled people for existing. If we are given prizes for existing, the world is allowed to assume yet again that our quality of life must be terrible, when in reality I am very satisfied with things as they are. Furthermore, when society stops believing that disabled people doing things with their lives are the exception and not the rule, the proper supports will be there because we expect them to be and not be there as a special project for “special” people. Real, meaningful inclusion can exist only when society stops treating the success of a disabled person as though it happened by chance or exceptional courage. Success happens when people are given support and included without fanfare, and given the opportunity to join the ranks of ordinary successful people who go forward with their lives.
If I am to be inspiring, I want to be inspiring because of my skills or talents, because of the unique mark I leave on this world. Measure me by the same standard as my walking counterparts. If I go to school and get a job, raise a family, and have my own place, allow me to be just a person engaged in everyday life, if I create a masterpiece someday that would be inspiring by any (wo)man’s standard, then we can talk. Until that day, when I wake up in the morning and roll off to class, think to yourself, “how unoriginal. It’s like she does it everyday or something.” And don't think for a minute that the life I live is something you couldn't handle. If one day you found yourself in my seat, you would be amazed at how natural the choice to go forward felt… because going forward is what living people do.