About the Author: Lisa Walters is a chronic illness blogger living with Ehlers-Danlos Syndrome. She writes amazing and humorous personal essays about her journey over on her blog,Â Damsel in a Dress. You can also learn more about Lisa on her instagram (@damselinadress.blog).
Photo Credit: @alexstead
I am a disabled woman. It has taken me a few years to get truly comfortable saying that and celebrating it, even though it has been my reality for a long time and a term I never should have shied away from. I am thirty-one years old and I live with hypermobile Ehlers-Danlos Syndrome. It’s a genetic condition, but I only started noticing symptoms in junior high, and only in the last five years have those symptoms become progressively worse.
Embracing disability as an identity has certainly taken me years. A big reason for that is probably because I slowly became disabled over time. When I first started noticing that my particular type of illness was actually disabling me, I didn’t feel like that word fit me. I felt like I was in a weird in-between where I definitely couldn’t call myself healthy or able-bodied but the word disabled felt too permanent and too heavy for the me that I was at the time. I thought I had to wait until I reached some arbitrary threshold before I could claim the word as my own. I thought I was too much of some things and not enough of others.
I also had a limited relationship with that word for most of my life. It never felt like a bad word to me. It wasn’t a word I whispered or said with a taste of pity on my tongue. It was just a word that did not belong to me.
I’m so glad I made it to this place in my life where I realize that disability is so many different things and it is a word that I can have and hold, too. A word that can help explain the frame in which I see and interact with the world around me. I’m glad that I took it in and let it shape me. It’s not a heavy word at all. In fact, it’s made me feel so much lighter.
My disability is a part of me. It is there in everything I do and everything I feel. Sometimes it’s really hard. Sometimes I feel defeated. Sometimes I do feel heavy. But the word is still light on my tongue, still warm in my heart. Because it is me and it is why I am who I am today.
Some people say they would never change their disability. Due to my own particular circumstances, I’m not quite there. I would definitely change the pain and I would change how closed off I can feel from the rest of the world, two things that are very entangled with my disability. But there’s so very much of my experience as a disabled woman that I would never want to give up. The determination, the strength, the empathy, the resourcefulness and the resilience that I have slowly learned through these last few years are so important to me.
I’m so glad I found myself in this word, a word that I can add to all the other lovely words that knit together to make me.
I am a proud disabled woman.