Why I Don’t View Myself as Disabled
We form our identity from the world around us. That includes factors like our relationships with parents, siblings, and friends, what we look like, our sexual orientation, and our religious beliefs, among others.
For me, one unspoken taboo is my disability. I use a wheelchair because I can barely walk, I need more time to rest, and I must keep track of countless medical appointments and medications, to name a few things.
On the outside, people can see that I have a disability, Duchenne muscular dystrophy. I’m not offended by that fact at all, and others can think what they want. It’s simply the reality of the situation.
But as I thought about my own identity, I came to the realization that I’ve never seen myself as disabled. This very thought pattern has allowed me to accomplish the goals I’ve set, make lifelong friends, and enjoy life.
I think this way partially because of the progressive nature of the disease. For the first decade or so of my life, I could still participate in sports by playing goalie in soccer and punching an inflatable handball. I could also play catch with my dad and my friends.
Yes, the things I did were different when compared with other people, but they were normal to me. I obviously couldn’t run a mile in gym class. And for our physical assessment, I would see how far I could stretch my legs out, but I couldn’t do situps, pullups, or sprinting.
It was still easy for me to fit in with my peers. I owe that to being surrounded by very mature and understanding kids, but also my ability to adapt to a situation. I did what I could physically without straining myself.
And as I matured, I didn’t see myself as needing to set different standards for myself just because I have Duchenne muscular dystrophy or because I was disabled. Reaching the rank of Eagle Scout wasn’t an “if,” but a “when.” So, too, was graduating from the University of Southern California with honors and interning at The Washington Post.
Not seeing myself as disabled has been an interesting way for me to cope with Duchenne. I’m less focused inwardly on what I can’t do because of my disability, and more outward-facing, understanding the abilities I do have and making use of them.
I don’t feel as bad for myself when I take the view that I’m not disabled, but rather different from the person next to me, like every human is. If I seek my identity in my disability, which happens from time to time because we’re all imperfect, I begin to spiral and lose track of who I am apart from Duchenne.
I am first and foremost a child of God. Secondly, I am the son of my mom and dad. I have a good sense of humor. Making people laugh, even at my own expense, is one of my specialties. I embrace my weirdness. I’m a thinker, observer, and doer.
This is who I am. My disability is not who I am. Duchenne is not who I am.
Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
Mary Ann Huisken
You are an exceptional guy....and so is your ability to express. Thanks for sharing! Much love