At the start of 2019, I knew little about Charcot-Marie-Tooth (CMT). My lack of knowledge about the disease meant that I had gaps in understanding of myself, a person with CMT, and a beneficiary of a wider disability rights movement.
I owe much of my growth this year to lessons I learned through my friendship with Kevin Schaefer, a college friend, and columnist for SMA News Today. I believe that I learned more about CMT and what it means to be a member of the disability community because of our differences — Kevin has spinal muscular atrophy (SMA), and I have CMT — rather than our shared experiences.
We first met as student reporters on North Carolina State University’s newspaper; I was a features editor, he a writer. We quickly became fast friends, bonding over the comic books that covered every surface of my office.
We stayed in touch after graduation, something that was easy to do as we had both begun our professional lives in Raleigh, North Carolina. A few years later, when I decided to abruptly change careers and find ways to be more creative, Kevin suggested that I explore my disability and my identity as someone with CMT through writing and reaching out to the CMT community.
And that’s how I became a columnist. Since then, I’ve met other members of the CMT community, read up on CMT facts, and honed my thoughts on my identity as a CMTer through my writing.
I call or message Kevin when I’m trying to think of issues that affect the CMT community. Though I have several CMTer friends, I value his opinion as someone with different disability challenges and separate experiences of ableism. I know that I can count on him to check my biases and prejudices.
I believe that, as members of the disability community, we owe it to ourselves to develop relationships with others within our community with divergent experiences, as well as folks from other disease communities.
I realize that I’m fortunate in this regard. You might already know that Charcot-Marie-Tooth News has sister sites dedicated to other rare diseases. I’m lucky to have co-workers from various communities to chat with and keep me grounded. Being part of this group also helps me counter some of the misinformation and oversimplified narratives that exist.
Many of us CMTers encounter frustrating misconceptions about the disease from the public. “Is it a muscle problem? Is it a problem with the tendons? Oh, isn’t CMT always fairly mild? Why do you need a scooter when you can stand? You don’t look ‘disabled.’” However, we can also hold mistaken beliefs about the experiences of our fellow CMTers and of others with different diseases and disabilities.
It often feels as if corporations and the government treat the disability community as a monolith. We shouldn’t do the same to one another. The CMT community is diverse; so too is the broader disability community. We are all unique and should strive to lift one another and celebrate our differences.
To borrow a line from the “High School Musical” soundtrack, “We’re All in This Together.” It’s worth keeping in mind. Whether we have CMT or SMA, ALS or cystic fibrosis — or any of the many other conditions that society often refers to using the catch-all term “disabled” — we win and lose together. We aren’t competing with one another, and we should value everyone’s experiences and feelings.
Many of us may struggle with even getting out of bed every morning, but when we stick together and seek to understand one another, we can move the world.
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.
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