Why it Took Me So Long to Realize I Was Disabled

Dear friends,

I am not a young woman, but in some ways I feel very, very, green. I can pretend like the rest of them - rounding up all of my accomplishments and parading them on social media, somehow hoping if the photo is bright and shiny enough, it will erase the pain and struggle of being a human. But this year, I found I didn’t want to participate. Because the thing I am most proud of is still so new and fragile to me that I have not wanted to share it. I haven’t wanted to have to explain myself, or defend myself, or have my identity questioned while I was still puzzling over what felt right for me.

Through reading “Disability Visibility” edited by activist Alice Wong or About Us: Essays from the Disability Series of the New York Times and finding a support group of people with facial differences, I have found a piece of myself that I hadn’t yet fully accepted. This past year has been mostly quiet on the creative front as I learned how to integrate a part of myself back into my life that I had been taught to pretend didn’t exist. With it has come immense pain. Medical trauma is a thing. Learning about the models of disability made me realize I have been stuck in the medical model for years. It’s lonely and confusing to divide yourself into these parts and painful and joyful work to put yourself back together.

I didn’t meet someone else with neurofibromatosis until I was 30. Isn’t that strange? It’s not that rare of a condition. But here we are. When I asked myself why that was, I came up with quite a few reasons. Some of it was my own ableism. I clung to being an anomaly. I didn’t have NF as badly as the others. I was different. I “passed” because I had musical talent. Or I was a very smart problem solver and valuable in the workplace. I needed no accommodations. Except when I did. There are seasons with my NF. Sometimes you need to go to a ton of specialists. Sometimes you need surgery. More recently with the advent of MEK inhibitors, sometimes you need to take targeted chemo. It’s your choice whether you want to disclose that, no matter how terrible you might feel.

But it’s important to share it with somebody. I have begun that work, and in doing so I have found immense power in saying that I am disabled. I am part of a rich community, and most importantly, I don’t feel so lonely anymore. I have words now, shared through countless stories similar but different from my own.

I didn’t think I was disabled because I didn’t know it was an option. I didn’t think I was allowed into a group experiencing different physical impairments than my own. With the social model of disability I know now that we are all trying to work within a system that doesn’t support us. Some of us might feel this more acutely than others. But our power comes in our collective understanding and compassion. That is what has been the most healing part of this “undoing.” I am not alone. And when I share, I give the opportunity for someone else to not feel so alone, either.