How I’m making my voice heard as an NMOSD advocate

A columnist shares one way she educates others about disability

Jennifer van Amerom avatar

by Jennifer van Amerom |

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I never wanted to be a disability advocate. I don’t know anyone whose childhood dream involved advocacy of any sort, but something happens, or you witness an injustice you can’t turn away from, and a champion is born.

I was born an advocate, except I didn’t know it until that unforgettable day when my legs stopped working. And months later, when I was diagnosed with neuromyelitis optica spectrum disorder (NMOSD) in early 2010, my fate was sealed.

The first time I used a wheelchair I was mortified. Looking back, I’m sure part of my drive to reclaim my ability to walk stemmed from embarrassment. Many weeks and hours of physiotherapy later, both alone and with a trained professional, I had graduated from a walker to a cane.

It was then that my husband, Mike, and I attended his colleague’s house party, where servers were passing around champagne and hors d’oeuvres. Someone even took our coats as we entered her home. I knew we shouldn’t have gone, given my health status, but I needed to prove that our lives could go on.

I stood awkwardly in our friend’s living room, gripping my cane tightly and trying to ignore my knees as they buckled in my nylon stockings. I could feel everyone’s eyes on me as Mike said hello. Over and over I was told, “It’s so good to see you!”

It took a lot of energy to stand there with my fake smile trying to explain NMOSD, especially when I knew so little then. I finally saw my moment to escape to the kitchen and maybe grab a seat with the wait staff. My legs wobbled with each step. With one hand, I grasped the edge of the large dining table as I moved along it, while my other hand crushed my cane into the plush carpet.

It was the slowest movement of my life.

As I walked— no, struggled — away, I overheard someone behind me use the word “crippled” to describe my condition. Something about that term instantly filled me with rage. My embarrassment vanished; instead, I was bewildered by how quickly I’d been labeled, especially because I was still in recovery.

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Stepping out of my comfort zone despite NMOSD

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Moments like this build character and create advocates.

While “crippled” is historically a derogatory and offensive term, many within the disability community have started to reclaim it. Jules Sherred, author of “Crip Up the Kitchen: Tools, Tips and Recipes for the Disabled Cook,” defines “cripping” as “a term used by disability rights advocates and academia to signal taking back power, to lessen stigma, and to disrupt ableism as to ensure disabled voices are included in all aspects of life.”

Nowadays, I have no problem cripping conversations to ensure my disabled voice is heard. However, I don’t think many of the able-bodied people who use the term as slang realize how offensive it is. “Crippled” has become commonplace in dialogue, often used to tease someone who’s unable to do something. Unfortunately, I’ve been and still am that person who can’t do certain things because my body won’t allow it. The term carries immense weight now.

I used to get angry when people used this outdated language as slang, but I now see those moments as opportunities to educate others calmly and confidently. When I explain how inappropriate the term is, many get defensive, which is a natural response to embarrassment. Saying they “didn’t mean it” is a poor defense, but for an advocate like myself, it’s an admittance that the term shouldn’t have been used in the first place.

I never want to be an advocate who looks down on others. There’s no need for hostility. What I can do is tell people that I know they meant no harm, because they usually don’t. Then I ask them to consider the term and what it really means. If they have questions, I’m here. If they don’t, hopefully next time they’ll think twice before using the word, and maybe even think about me.

Note: Neuromyelitis 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 providers 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 Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).


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