Learning to appreciate diversity in the disability community
I'm better able to see how sex, income, and culture affect our CMT experience
There’s no road map of what to expect with a disability or chronic condition such as my disease, Charcot-Marie-Tooth (CMT).
Sure, I have typical symptoms to consider: weak hands and ankles, foot drop, fatigue, and chronic pain. But I have my own unique life with my disease, just as each of us with CMT is different, for a range of reasons. A man with CMT has a different experience from a woman with the disease. The experience of a wealthy person managing CMT symptoms can be different from that of someone with limited income. And culture can have a profound effect as well.
Over the past several years, I’ve often thought about the importance of highlighting disability narratives in popular media. I’d found it unnerving that while some statistics suggest that up to 1 in 4 Americans are disabled, I still found it difficult to find disabled representation in films and other forums. But I admit that I hadn’t given as much thought to the diversity — or rather, the lack of diversity — within the representation that we do have.
This recognition, perhaps, should propel an important self-examination by many of us within the disability community — not to shame ourselves or push forward diverse voices in a contrived or performative way, but simply to ensure that we’re fully embracing one another in ways that matter to those we seek to love.
I’m not only my disability
For me, this examination comes with the realization that in some conversations with folks in disability spaces, I haven’t been very intentional in recognizing or appreciating the other aspects of people’s lives, instead choosing to focus only on the identities we have in common because that’s often what feels safe and comfortable.
But if others focus only on my CMT diagnosis and my particular symptoms, perhaps ironically, I don’t think it’s possible to fully understand how CMT management manifests in my life. I’m still an Asian guy who grew up in North Carolina, regardless of whether I’m talking or writing about disability or just hanging out with friends. And those aspects of myself influence the way I experience many things, including CMT.
For example, many Asian Americans take their shoes off when they enter someone’s house. That can be frustrating for me because I’m not incredibly quick to tie my shoes in the first place, let alone put on and take off ankle-foot orthoses (AFOs). This practice may not matter much to CMTers who don’t live in a culture where it’s a norm.
This set of considerations is also important for folks outside disability spaces — especially caregivers, physicians, and policymakers who want to improve their services to disabled folks. It’s difficult to appreciate the profound effect disability can have on a person’s life without considering the way it intersects with other aspects of a person’s life.
And even if, ultimately, such information may not lead to a difference in policy, diagnoses, or treatment suggestions, I do believe it affects some of the more intangible aspects of care. I know I feel safer in the hands of my healthcare provider because he’s known me for so long, and not just as a patient. He knows more of the ways I’m unique.
Ultimately, there are as many paths for living with a disability as there are disabled people in the world. All people in the disability community are living their own lives and can offer their unique perspectives and viewpoints. And all of us ought to aspire to appreciate this kind of diversity within the disability community because it can help improve our understanding of our conditions and allow us to more fully embrace and uplift one another.
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.