I’ve seen variations on this question come up on several disability-related Facebook groups recently, and I find everyone’s responses interesting. Although it seems like a simple question at first glance, it’s actually fairly complicated once fully analyzed.
I think it’s safe to say that most disabled people’s gut reaction when asked this is something along the lines of “No, of course not. I am NOT my disability, and there is so much more to me than my condition. That’s like saying you define yourself as a redhead or a short person. I don’t want people to think of me as the ‘disabled’ person in the room.”
And I completely agree with all of that. My wheelchair is certainly not the first thing I want people to think of when they think of me. I don’t want people to say, “Oh, Katherine, I remember her. The little blonde girl in the wheelchair that broke a bunch of bones.” I’d much prefer, “Oh Katherine, yes, she is a great artist and has become filthy rich off of her art and jewelry designs. She works with so many musicians on their design projects. I think she’s visiting Rod Stewart in London now.” (Hey, a girl can dream.)
However, the fact remains that Osteogenesis Imperfecta is a HUGE part of my life, and it DOES dictate much of my day to day activity. I had to learn to advocate for myself at a very young age, therefore it’s always been easier for me to talk to adults rather than kids. In some ways, I had to grow up a lot faster than my peers. I started a business and became a boss right out of college because of physical necessity. Most of my life has to be meticulously planned out so that I get the things I need, like the ability to go to the bathroom or to eat. I have to rely on everyone around me and work my schedule around theirs. It’s made me HAVE to be extremely organized, and I’m always thinking about the future, both near and distant.
So, does my disability define me?
Yes…and no.
Yes. There are certain personality traits of mine that are brought out and accentuated by my disability. Yes. My disability plays a huge part in my method to make money, my social calendar, and my general perspective on life. It’s true. There is not a single action I take every day that is not affected by my physical condition.
But…No. Receiving half of my genes from my father pretty much ensures that I will be anal retentive no matter what. I actually LIKE to know what is happening when, and I would never describe myself as a “go with the flow” kind of girl. I like to be on time and I like structure. I don’t think that would change if I didn’t have to rely on others for so much. I also think I would be an artist regardless of my physical state. I may not own my own business and I may be drawn to a different type of art, but I think my basic career choice would be much the same. Ditching the wheelchair would not affect my love of music, a good murder mystery, or a gourmet meal in a fancy restaurant. I would still love to go to concerts, movies, and on vacations with family and friends. I’d still be raised by the same people, so my moral structure and basic beliefs would be exactly the same (which, I think, is a good thing).
When you are physically different than most, it’s unrealistic to say that you have “overcome your disability completely” and that it doesn’t “define” you at ALL. No matter how much you deny it or how much you wish it wasn’t there, your physical state is still a big part of who you are. I think it’s more accurate to say that you take part in society and you live your life DESPITE or even WITH your disability, and to acknowledge that it does often dictate HOW you do everything you do. Most physical disabilities are certainly not death sentences, nor are they excuses to check out of life completely. But they ARE there and they DO make a big difference in how you live your life. Your physical disability doesn’t necessarily have to exclusively DEFINE you, but it will definitely INFLUENCE everything you do and who you become.