A few months ago, I was sitting at a local coffee shop with my friend when I made a self-deprecating joke about my disability- something along the lines of: “Yeah, but people like me weren’t meant to do stuff like that… because of, you know, being disabled,” I paused for dramatic effect. For me, this was a typical joke, and all in good jest. I didn’t think anything of it.
It was a different story for my friend, who reacted with genuine shock to my sarcastic comment. “Why are you so negative all of the time?”
Now it was my turn to be taken aback. “What do you mean…?” I asked, the words pouring slowly out of my mouth.
“I don’t understand why you talk about your disability all of the time like that. I wish you were more positive.”
My first instinct was to alert my friend about their blatant ableism. How could they not understand how offensive their response was to something that I, a disabled person, was saying about myself. I couldn’t believe that they were really advocating for me to erase myself- had it not been clear that I was joking?
But as I continued to process, I stopped myself and thought, they have a point. Why am I always talking about my disability? And why does it matter to me?
Here’s my reasoning:
I was formally diagnosed with NVLD when I was 23 years old. What might be a site of shame, privacy, and concealment for neurotypical and able-bodied people was and is for me an answer, a relief, a sense of self. After my diagnosis, the reeling anxiety of being different and sticking out in all of the wrong ways was replaced with feelings of peace. Yes, my NVLD diagnosis meant that I was different and that I’d still come across struggles. All because of my brain’s different and unique wiring.
And that’s OKAY.
In the past year, I’ve noticed myself grow more confident. I have healthier relationships. By learning about the different symptoms and triggers, I have a keener sense of when to set boundaries for myself. I know when to ask for help, and I feel much less embarrassed than I used to be. Saying and claiming “disabled” and “disability” are shown to help youth and young adults alike embrace their disabled body-minds.
Learning to accept parts of yourself is not an easy process. It is not linear. You will feel disappointed. Some days, you will cry and a black hole will reopen over your heart. The feelings of wanting to conceal your disability at all costs will resurface. Know these moments are merely fleeting. But then I envision a world where disabled people are not viewed as negative burdens, as outsiders. Embracing my NVLD is a strong start.
Jessica Rauchberg (she/hers) is a Ph.D. student in the Faculty of Humanities at McMaster University. Connect with Jess on Instagram: @disabledphd.