July is recognized as Disability Pride Month, as it coincides with the anniversary of the signing of the Americans with Disabilities Act of 1990. Whereas this law secures basic rights for those of us with disabilities, disability pride is a phrase that encourages society to fully embrace us as productive and equal citizens.
In my column about the Netflix documentary “Crip Camp,” I referenced this quote from Denise Jacobson, one of the film’s main subjects: “The ADA was a wonderful achievement. But it was only a tiny tip of the iceberg. You can pass a law, but until you change society’s attitudes, that law won’t mean much.”
I’ve been encouraged by the number of social media posts I’ve seen with the hashtag #DisabilityPrideMonth, and the overall positivity on display. I too shared my thoughts in an Instagram post (plug, plug, follow me).
I wanted to take a moment to expand on this excerpt from my post: “I do aquatic therapy and work with my healthcare team to continually improve my energy levels and physical capabilities. That doesn’t mean I’m ‘waging war’ on my disability. It’s very much a part of me, and I have a great quality of life.”
Having lived with spinal muscular atrophy my entire life, I have a complicated relationship with my disability. There was a time when it didn’t affect me as much as it does today, and I had more physical independence back then. Then there was a time when SMA was my greatest adversary. I hated how it constantly robbed me of abilities I once had, and how it seemed to be the source of all my problems. It left me in a paralyzing state of hopelessness.
At a certain point though, I realized that this mentality was more harmful than anything else. I could continue to dwell on my own frustrations, or I could accept the things that I couldn’t control and still live my life.
Even now, with two treatments on the market and others in development, SMA will continue to be my reality for a long time. Instead of wishing for it to go away, choosing to confront it and to accept it has liberated me.
Yes, I have days that are absolutely miserable. Sometimes, SMA takes such a heavy toll on me that I lose all motivation and sense of fulfillment. Some days, all I want is to be “normal.”
Yet, for every one of those bad days, there are a thousand more when I’m reminded of the resiliency, compassion, and strength of the SMA community. I am a part of something a lot bigger than myself, and I’m proud to be a part of it.
My disability comes with numerous challenges, but it’s also given me a unique perspective on life. Whereas I used to dodge questions about SMA, I’m now happy to talk about it with one of my many one-liners. If you compliment my driving ability, I’ll commend you on your walking skills.
There are numerous misconceptions about those of us who live with disabilities and rare diseases. People overthink how to approach us or ask us questions, when the reality is that we’re just people. I still work, travel, and engage in an active social life. I am blessed, and I’m happy to answer questions about life with SMA. Just be prepared for my snarky humor.
I can’t speak for everyone with disabilities, and I welcome different perspectives. I am grateful for Disability Pride Month, and I hope that it fosters an atmosphere of positivity and acceptance for people like me.
Note: SMA News Today 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 other 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 SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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