By Kimberly Parsley
Disability is rarely ever straightforward. Disability caused by and in combination with chronic illness never is. A rare disease called Von Hippel-Lindau led to my blindness when I was 14 years old. When I was 20 years old, I had the first of what would become many brain surgeries. I bounced back from all the surgeries like a champ.
Until I didn’t.
When I was 40 years old, I had a spinal cord surgery that left me without the use of my left hand. I had to relearn how to walk, feed myself, everything. I thought I knew disability pretty well, but it turns out, that recovery had a lot to teach me.
And just when I was getting my life back in order from that surgery, I had to have a tumor removed from my brainstem. Doctors have to tell you everything that could go wrong in an operation, so my neurosurgeon told me that one possible outcome was that I would need a tracheotomy to help me breathe after the surgery.
Wait a minute! A tracheotomy! Would I be able to talk after a tracheotomy?
The answer was… Eventually.
And that, Dear Reeder, is when I realized just how important to me my voice was.
I only had a vague idea of what I look like these days, but that didn’t matter because who I was, the essence of who I considered myself to be, was tied up with my voice. My voice was how I expressed myself. For me, my voice was the way I walked through the world. I mean sure, self expression does not have to be through one’s voice. We know many of our disabled sisters and brothers who manage just fine without a voice. They are killing it every day, and they are awesome. They express themselves fully, eloquently, and with style.
For me though, I had already had one mode of self expression taken away from me. I used to be a writer. I could type upwards of 120 words a minute, which was good because my brain tends to move very fast. But that spinal cord surgery when I was 40, yeah, I never got The use of my left hand back. No more typing. And I was someone who typically thought through my fingertips. But I had learned to use dictation. And now, this disease, this horrible disease, was threatening to take my voice away from me too. And there was nothing I could do about it. Not having the surgery was not an option. My kids were still young, and I wanted to be there for them.
Fast forward to 2022. I began hosting a podcast, so it’s not a spoiler to tell you that the brain stem surgery did not require a tracheotomy. I came through that surgery with profound balance problems, but with my ability to speak intact. That’s when I decided that I was going to do something with this voice I had been so Worried about losing. When Dave Matheis, former editor of the **Disability Rag,**_ brought up the idea of doing a podcast about disability advocacy, I could not volunteer fast enough.
Demand and Disrupt as a podcast for people with disabilities created and produced by people with disabilities. The guests on the show are all people who have a disability themselves, who have a close family member with a disability, or who work in the field of disability advocacy in Some form. I am proud of the podcast. It is both fun and challenging. It has given me the opportunity to meet incredible new people, reconnect with other incredible people with whom I had lost touch, and explore in depth the idea of disability pride.
Would I like to be able to type again? Sure. Would I like to be able to walk without feeling like I’m on the deck of a ship during a hurricane? Absolutely. Am I proud of myself, my accomplishments, and this awesome community of creative, resourceful, and adaptable people that my disability has given me the chance to be a part of? You better believe I am!
I’d love it if you’d give the podcast to listen.
https://demand-and-disrupt.pinecast.co
Kimberly Parsley is a writer, Podcaster, and disability rights advocate. She lives in Bowling Green, Kentucky with her husband and two kids. When she isn’t working, she’s either reading, trying to figure out what the dog has in its mouth, or playing with AI in the hope that it will tell her what is in the photo she just took.
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