About 10 years ago, I found myself walking down a busy side street near one of the larger night markets in Taipei, Taiwan. No direct family members lived there, and although I am ethnically Chinese, my Mandarin is extremely limited. In short, I’m what those in the Asian American community would consider “a pretty Americanized Asian.” Although many Asian Americans consider Taiwan part of the “homeland,” it was a pretty alien place for me.
That’s why I found it funny when a young girl bumped into me and said “I’m sorry” in Mandarin. Before I could butcher a response, she hurried past me to join her friends. Then I saw a logo I recognized on the back of her T-shirt. It was from one of the larger annual conferences on Asian American interests. Next, I heard her chatting excitedly with her friends — in distinct American English.
Apparently, on some occasions, two Asian Americans who find themselves on the other side of the world can’t recognize each other for who they are. I wonder if it’s the same way with those of us with invisible disabilities, such as Charcot-Marie-Tooth disease (CMT).
CMT affects approximately one person in every 3,300 worldwide. The university I attended has a student population of more than 33,000. I had always wondered whether there were other students like me who had CMT. Statistics would deem it likely, after all.
I think I would have liked to have found someone like me in college — a comrade with whom I could exchange stories of falling on our faces during gym or talk about ankle pain. Thoughts such as these make me wish I had sought out my local Charcot-Marie-Tooth Association chapter a little earlier.
But even now, I wonder how many people affected by CMT I may have passed. Would we be able to recognize each other, perhaps by the way we walk or by our ankle-foot orthoses? Sometimes, I find myself watching intently as people walk by, wondering if someone’s gait might indicate some level of experience I share with a stranger.
If many others with CMT share my fears about being open about it, however, such a serendipitous meetup becomes less likely. How can I hope to connect with others over my CMT if I never bring it up in real life?
Because there is still a lot of stigma in our society regarding disabilities, it is easier to just never bring up CMT to friends, acquaintances, and employers. It’s easier to try to reduce any barriers that keep people from seeing me the way I want to be seen. And I don’t want to fall victim to someone else’s label or prejudice.
I think we all treasure genuine connections with other people. We like it when people understand us, respect us, and see us for who we are.
Writing this, I feel like I’ve stumbled backward into an unexpected conclusion that reaffirms a message a friend much wiser than me sent. It was an image, probably from Tumblr, referring to a statement made by Tim Kreider in one of his essays: “if we want the rewards of being loved we have to submit to the mortifying ordeal of being known.”
Admittedly, upon receipt, I was probably a bit dismissive. “I don’t want to be loved, I want to be understood,” I thought. Disabilities aren’t character flaws that we should have to just accept in order to appreciate someone. If I say it’s part of my identity, then people should appreciate me because of CMT — not in spite of it.
However, if that’s the case, then I wonder, “Is not being more open about CMT treating it like it is one of my character flaws?”
I have conflicting thoughts on the matter, but the needle regarding the stigmatization of disability needs to move forward. And before I expect to see it moved in society, perhaps I need to change my own thinking.
Regardless, in the meantime, I will still wonder how many folks around us are affected by invisible diseases and how many stories and narratives I have yet to hear and learn from.
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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