Rare Disease Day Reminds Me of the Importance of Community

For much of my life, I couldn’t imagine a better world for those of us with disabilities, rare diseases, and chronic conditions. I just wasn’t thinking about the disability rights movement. I didn’t feel like I fit into what I had perceived as “disabled,” and I didn’t really…

A Toast to the Good Things in a Difficult Year

I had a conversation with someone recently about the positive things we were grateful for in the past year. Perhaps it is a typical topic of discussion this season. However, this year hasn’t felt like a normal year for me, and I know many others feel the same.

If Lessons Are Gifts, CMT Handed Me a Few

I was looking at some Christmas decorations at a store the other day, a set of oversized, faux gift-wrapped boxes complete with bows and lights. And they reminded me of something I had heard before about disabilities, including Charcot-Marie-Tooth disease (CMT): For those of us affected by disability, we can…