Why My Journey With Disability Pride Isn’t Linear
Even though I’ve been disabled all my life, I had never heard of Disability Pride Month until I scrolled past someone’s Instagram post last July. I guess that’s the beauty of social media: For every detrimental effect it has on our well-being, it can also serve as a wonderful tool to educate and empower the masses.
After doing some research, I discovered this month-long event was established in New York City back in 2015 as a way to recognize the Americans with Disabilities Act, encourage progress toward a more inclusive world, and amplify disabled voices. What I love most about Disability Pride Month, though, is that people band together to celebrate their disabilities and showcase their personal stories with pride.
I have found my disability pride to ebb and flow over the years. If I’m being fully transparent and honest with myself, I’d say most of my life was spent desperately trying to find pride in living with SMA.
That’s a tough reality for me to face today as I’m so far removed from that mindset. In fact, a past column of mine explored the idea that my disease defines my life in which I find pride. At the same time, when I consider the stigmas toward disability, the ones that tell me I’m less-than because of my disability, I can’t blame the past versions of me for not feeling proud.
What I have come to learn is that having pride in my disability means having acceptance. But acceptance, in my personal opinion, is less of a destination and more of a journey, one filled with hills and valleys and winding roads with detour signs when you least expect them.
I explained this recently in an Instagram Live with SMA News Today: The journey of acceptance, or pride, is just that — an ongoing process that requires work and discipline. It’s something I have to work at every single day. While I am proud of the person I have worked so hard to become and while I accept who I am, there are times when this truth seems hazy.
It’s times when my body is too weak to carry out the simplest task, like typing a text message. It’s times when my vertigo is so intense that I can barely keep my eyes open or when my stomach has me in the fetal position and wincing in pain. It’s times when everything about my body feels out of my control that I find it exceptionally challenging to be proud of my disability.
But it is during these times that I also find the strength to face these challenges and learn how to coexist with them. And that, to me, is something to be proud of. That, to me, cultivates acceptance toward myself and my disability.
My journey with disability pride isn’t linear. It’s messy and complicated, beautiful and empowering, and everything in between. But at the end of the day, it is a life I’ve worked hard at, so I choose to celebrate Disability Pride Month. I aim to bring awareness to this movement. And I aspire to live with disability pride all year long.
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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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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