The Wariness That Comes With Disability

The Wariness That Comes With Disability
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Although there are many words to describe the disabled experience, I’ve been thinking a lot about the word “wariness” this week. Many of us in the disabled community are indeed wary of many things. We go through great lengths to anticipate pitfalls, challenges, and risks in our everyday lives.

We plan out our days carefully and prudently. We make accommodations for ourselves and come up with workarounds. We have our own kind of internal calculus to consider dangers, because our bodies aren’t always dependable, and the world isn’t as inclusive as it should be.

This constant wariness is something I’m trying to be mindful of in my own life because wariness can be good or bad, depending on the situation. It’s important to try to channel this feeling of wariness in a positive direction.

A wariness that leads to prior preparation

When my siblings and I were children, my father didn’t necessarily talk about wariness, but he impressed upon us the importance of anticipating problems and challenges. Whenever I undertook a new activity, he reminded me to anticipate. And whenever I failed at something, he suggested it may have been because I didn’t anticipate all the possible pitfalls.

As my siblings and I have gotten older, we’ve tried to take my father’s advice to heart. Thus, the word “anticipate” has, in some ways, become my family’s shorthand version of the widely used adage, “Prior preparation prevents piss-poor performance.” 

So, a manageable level of wariness can oftentimes be a good thing. It has helped me and others to be creative in making accommodations for our bodies while still pursuing the life we want to lead.

For those of us with Charcot-Marie-Tooth disease (CMT), this often means being creative and finding ways to make up for our weak hands and ankles or our unpredictable levels of energy. And because many in our community are always looking for solutions to our unreliable bodies, the kind of wariness that inspires ingenuity and flexibility is something worth celebrating, so we can come up with solutions together.

For example, I’m always on the lookout for different exercises that benefit a CMT body. Although I’m sometimes embarrassed by them in front of my able-bodied friends, I’m always appreciative when my father shares his latest adaptive tools such as bottle and jar openers.

A wariness that leads to acting in fear

On the other hand, it is easy to be overwhelmed when imagining all the ways a body can fail you. Many of my biggest regrets in life are marked by fear. 

From the fear of twisting my ankle and embarrassing myself in front of my tennis instructor to the fear of pity during summer church events and birthday parties at the local roller rink, I’ve too often allowed the thought of everything that could go wrong to prevent me from trying my best and possibly succeeding. Or, at the very least, fear may have prevented me from failing in a more spectacular and worthwhile manner.

A wariness that opens our eyes to injustice

Although making adaptations and compensating for an uncooperative body is one thing, making excuses for society when it should be better is another thing entirely. 

Encountering and overcoming problems and challenges abled-bodied folks don’t give a second thought to is nothing new for the disabled community. There was a time when disabled folks needed to plan around the fact that curb cuts weren’t common and handicapped parking was rare. Such was the situation as recently as 30 years ago — right before the Americans with Disabilities Act (ADA) became law in 1990. 

I can hardly imagine a world without the benefits the ADA has created for many disabled folks in the United States. In the past, I’ve wondered where the disability movement goes from here. Nowadays, whenever I think of opportunities to move the needle of progress forward, I think of all the challenges and risks that we in the disability community often account for. They exist not because of our disabilities, but because of how society is lacking.

These challenges include lack of enforcement of existing ADA rules, making room for disabled narratives, and being inclusive in our words and actions. 

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

Young Lee is a writer with CMT1A living in Cary, North Carolina. He graduated from NC State University in 2013 with degrees in Economics and International Studies. After working for a few years in finance, Lee decided to shift his attention toward writing and library studies. Although Lee first learned he had CMT at a very young age, he didn’t participate much in the CMT community until 2018, when his friend and fellow Bionews writer, Kevin Schaefer, encouraged him to explore and learn more about this very important aspect of his life.
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Young Lee is a writer with CMT1A living in Cary, North Carolina. He graduated from NC State University in 2013 with degrees in Economics and International Studies. After working for a few years in finance, Lee decided to shift his attention toward writing and library studies. Although Lee first learned he had CMT at a very young age, he didn’t participate much in the CMT community until 2018, when his friend and fellow Bionews writer, Kevin Schaefer, encouraged him to explore and learn more about this very important aspect of his life.
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2 comments

  1. evelyn r griswold says:

    So true. Your wariness and my weariness go hand in hand. Trying to anticipate obstacles and prepare ways around them makes me weary. Trying to have a positive attitude helps.

  2. AILEEN HARRISON says:

    I didn’t even know I had CMT until I was about 50 when it suddenly burst on the scene when very clever young scientists cracked the Genome sequencing. Til then I always just walked “funny”. Still danced, rode my pushbike, walked on the beach, and thoroughly enjoyed life. Luckily I only have CMT 1A, but as time marches on everything gets worse. At least Doctors now don’t say “CMT what???” Never heard of it must look it up. Both my brothers have it also, and as I am the eldest I am checked out every time we get together. I find BALANCE (or lack of it) is my biggest problem. Found out it came from a great uncle who lived in Canada and whose offspring were quite badly effected. Cheers all my fellow CMT’ers chin up – exercise as much as possible and don’t get over weight.

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