Say, What Unites the Disability Community as a Community, Anyway?

I can’t say I’ve always loved every moment of being Asian American, but I’ve always felt connected to Asian American culture. And I appreciate that.

I see myself in Asian American stories. The way we show love feels ingrained in me. The jokes are familiar. And so are the memes. The struggles and tears, too. I feel at home in Asian American culture. I love it. And although I never want to “gatekeep,” I do feel a bit protective of it.

However, I’m also part of another minority group in the United States. Because I have Charcot-Marie-Tooth (CMT), I feel like it is appropriate to call myself a disabled American. It’s a part of myself I’m continuing to learn about. And although I know not every CMTer feels the same way, I personally hope I can develop a deeper relationship with the larger disability community. It’s something I’ve tried to be more intentional about for the past few years.

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However, although I feel like I can naturally understand what it means to be Asian American, I find the experience of being part of a community of disabled people a little more difficult to describe and define. In particular, for the past few months, a few questions have been on my mind: “What exactly ties the disability community together? And is there such a thing as a disabled culture?”

I know having a uniform experience is impossible. After all, disability is an incredibly expansive umbrella. And the disability community is a group that encompasses members from diverse backgrounds. Anyone, at any age, from any race, religion, sex, or any other community can at some point in life become disabled. But what unites us?

I believe it’s problematic to say it’s purely struggle, pain, and frustration. That would not be reflective of my own experience. And I never find such things to be enough to make a good foundation for a community. Besides, it’s offensive to use only such things to define a culture. 

There must be love, joy, and celebration too.

And I guess that’s something I’ve been trying to probe and discuss with other members of the disability community for the past year or two. It’s a topic I find useful to explore and talk about. I think it helps inform our ideas about what we are and where we feel like we want to go.

Ultimately, my thoughts on this topic are still developing. However, I do believe that the simplest and purest thing that unites the disability community is simply our desire to be a community in the first place, to be active participants, and to be seen and treated by others as part of something bigger. Such a thing may indeed be simple, but I don’t think such a desire is trivial.

It’s a desire to see us all thrive as a collective. And although that desire may take different forms and is colored by our diverse experiences and our varying levels of ability, we are all working toward something similar.

Specifically, in the CMT community, I’ve seen that desire take a variety of forms. It’s in the way we show love through sharing our favorite “CMT life-hacks” or our favorite adaptive tool or piece of clothing. I see it in the way we prioritize honesty, care, and simply showing up. And I also see it in the way we strive to work together.

I’m happy to be a part of the CMT community. And I’m also happy to be part of the disability community. I’m excited to see all we can do and accomplish together.

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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, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.