This Is the Real Barrier I Face Because of My Disability


Dear Spinal Muscular Atrophy,

Oh, what a tangled web you weave. I grew up hating you because that was what was expected of me, but truthfully, you’ve also provided a lot of good to my life. How can I find a balance between dealing with the issues you present and being proud of who I am as person with a disability?

Yes, SMA is progressive. Yes, my muscles have gotten much weaker in the 34 years we’ve lived together. SMA can and does kill babies, but thanks to medical advancements, we are seeing many living longer lives. And that is the operative word: “living.

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It seems to me, SMA, that the bigger issue is how others treat us because of you. The biggest barrier is the lack of accessibility of much needed services: equipment needs, access to healthcare and access to care. With those things, many of us living with SMA have the ability to achieve whatever goals we set for ourselves. I see advancements in equipment as forms of technology that put me on a level playing field. As it should be!

Attitudes others have toward you, SMA, are quite stifling. Yes, I believe we need treatment options to eradicate the negative effects on our bodies, like respiratory issues, muscle weakness and for some of us, constant pain due to lack of movement. However, must we talk about you like you’ve made us less than, suffering or broken? Must we speak about “fixing you” as if some part of us is missing because of you, SMA? Those sentiments lead society to figure those of us with you are broken and less than able-bodied people, making it even harder for us to get those much needed services.

Many of us have found success. We are mothers, fathers, sisters, brothers, teachers, lawyers, filmmakers, doctors, aunts, uncles, cousins, students, actors, technology gurus, athletes, artists, writers and more. We come from all walks of life — all genders, sexualities, races, religions, cultures and nationalities. SMA doesn’t have to have us. It doesn’t have many of us.

You’ve made me more compassionate. You’ve made me more understanding. You’ve made me a better person, SMA, and for that, I thank you. I’m proud to be a person with a disability. I’m proud to show the world that people with disabilities are just as equal, just as capable and just as worthwhile as anyone else. Sure, you frustrate me some days, SMA, but I don’t think I’d be as good a person if you weren’t in my life.

Having you in my life has certainly helped to shape my worldview. It’s made me the strong disability advocate I am today, and I wouldn’t change anything about having you in my life. So, thank you, SMA. Without you, I would probably be ordinary. Because of you I am so much more.

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For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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