As human beings it is said that our life-long quest for identity begins with a single question–“Who am I?” It’s the question we struggle with all our lives as we try to figure out what makes us who we are and how that person fits in with the rest of the world. For people with disabilities however, the second question that often immediately follows is “Why me?” … Why do I have this body? Why was I made so differently? Why is it I must be so completely out of step with the world?
I have Osteogenesis Imperfecta–a rare genetic brittle-bone disorder that affects about 20,000-50,000 people in the US. I am 3’6″ tall, have thankfully not broken any bones in ten years but I still use a power wheelchair for speed and safety. There is no history of OI in my family so my particular case was caused by a random genetic mutation. Looking at how rare my condition is, you’d think I would be a perfect candidate for mulling over “Why me?” I mean, there are state lotteries with better odds than that!
Except I don’t. I won’t tell you that I’m wild about being disabled or that I don’t get frustrated at the various inconviences that it causes, but I have never found a need for the question of “Why me?” The reason for that is it is intricately wrapped in the first question–“Who am I?”
The person I am today is the result of a million different experiences, hobbies, habits, friends, family and so on. Now, imagine if I hadn’t been born disabled. Sure, I’d be able to walk, dance, skydive or whatever… but would I have had the same experiences growing up? Would I have developed my drawing skills if I could run around and play soccer? Would I have acquired a passion for learning and done as well academically? Would I have had the same friends? Lived in the same house? Had the same relationship with my family? Would I even recognize myself as the same person?
Should I trade who I am as a person and what I’ve experienced in 26 years for the ability to walk? Asking “Why am I disabled?” is no different from asking… why was I born to my parents instead of another couple? Why am I Canadian instead of Nigerian
? Why am I right-handed instead of left-handed? Disability is part of my identity. It is part of what has created me as a person and to try to cut it out of my life, would be to destroy everything I am and potentially every relationship I have ever known. Even at my most frustrated, I can’t fathom ever wanting to wish that upon myself.
Thus I leave “Why me?” behind and join the ranks of humanity in the eternal question of “Who am I?” It is, after all, a much more interesting question.