Columns

What Ableism Looks Like to a Person with CMT

Ableism is discrimination or prejudice against people with disabilities. It can occur in many ways — some ways subtle and others overt. A person with a disability may experience ableism as unwelcome stares or a building or event being inaccessible. Though I have encountered ableism for ages,…

Maintaining a Positive Body Image

The Center for Eating Disorders defines body image as the “subjective picture or mental image of one’s own body.” It is how one feels about their body, and can be positive or negative. Having a positive body image is difficult enough without having a disability. In today’s…

Pondering Questions of CMT and Identity

A friend and I surprised each other recently. I casually mentioned that I have Charcot-Marie-Tooth (CMT). And she revealed that I had never previously brought up the subject. We have been friends for almost 10 years. In college, we spent many late nights together working on articles for the…

What Accommodations Are Available to Help My Son in School?

At my son’s Individualized Education Program meeting, the team asked what accommodations he requires due to Charcot-Marie-Tooth disease. He has little impact from CMT, with the biggest issue being motor dysgraphia. This is a learning disability that affects handwriting and fine motor skills. Our doctor…

Leaning on Friends

I don’t particularly like hiking. Steep inclines and unpaved pathways make me nervous. And sometimes it feels like I have pogo sticks instead of feet. I don’t always know which direction my body will propel me. Nevertheless, the hiking trails along the Blue Ridge Parkway are gorgeous. And whenever…

What I Miss the Most

Someone asked me what I miss the most since being diagnosed with Charcot-Marie-Tooth disease (CMT). I had to think hard about it, as I’ve had CMT for as long as I can remember. Has it always been this bad? No, it has definitely progressed more than I…

A Thank You to My Old AFOs

In grade school, I used to launch my ankle-foot orthoses (AFOs) from my foot and into the air by twisting my toes as I kicked as high and as hard as I could. I would watch my AFOs spin in the sky before they fell to the ground. The…