Rare Disease Day Reminds Me of the Importance of Community

For much of my life, I couldn’t imagine a better world for those of us with disabilities, rare diseases, and chronic conditions. I just wasn’t thinking about the disability rights movement. I didn’t feel like I fit into what I had perceived as “disabled,” and I didn’t really want to. 

When I look back on my younger self, I can tell that I believed some problematic things. And I bought into some false narratives and practices that can be destructive for someone trying to manage a condition like Charcot-Marie-Tooth (CMT) disease. 

I think a lot of that was possible because for so long, I excluded myself from the CMT community and the rare disease community as a whole.

One false narrative I bought into was that it was appropriate and logical to be embarrassed for having weak hands and clumsy feet due to CMT. After all, I rarely saw people celebrated or rewarded for talking about disability. And there wasn’t much shown in mass media to convince me otherwise. 

Another narrative I believed was that many of my struggles were unique to me, so to wish for better treatment would be a tad selfish. Alone and detached from the CMT community, I thought my desires for wider shoes and my memories of childhood leg cramps that had me screaming into the night were just my own particular quirks that I’d have to get used to.

And so, I never thought to question the societal structures that make it difficult to manage a disability. I also never thought to question my own internalized ableism and ignorance regarding the disability rights movement.

I’m glad I don’t buy into these narratives any longer. And I’m happy that I’ve grown in my understanding.

But I think many elements of these harmful narratives still dominate what I see in media and society.

I can only speak to my experience in the United States, but I don’t think American society has ever given sufficient thought to creating a space for those of us with disabilities. And although social media has made it easier for us to connect with one another, there’s still a lot of room for progress when it comes to having our voices heard.

Too often, the message we hear is that those of us with disabled bodies should be ashamed of them. We hear that some consider our deaths to be acceptable losses and that others may be better fit to speak on our behalf. In business, we learn that our disabled identities are only fit to either erase or exploit.

This is why I believe creating our own disabled spaces, connecting, and chatting — simple stuff — can be what helps move the needle of progress forward. Indeed, for those of us in the disabled community and for those of us with chronic conditions, simply being out, being open, and raising our voices can be radical.

And it’s why I’m happy to see initiatives such as Rare Disease Day, which is coming up on Feb. 28. Because although the events for the occasion are all virtual this year due to the pandemic, I know it will remind many of us of the importance of reaching out to one another, sharing our ideas, and affirming our worth. I treasure every event like this, and I’m happy to see more to come.

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Note: Charcot-Marie-Tooth 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 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 Charcot-Marie-Tooth News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.