I wanted to hide my disability
When I was a teenager I wanted to hide my disability. I didn’t want to not be disabled. I loved how my wheelchair moved me. I liked my body just the way it was. I just didn’t like how other people looked at me. I didn’t like how other people treated me. I wanted to keep myself exactly the way I was, but be able to hide the disability part from other people, like it was a treasure.
Society's expectations when you have a disability
I wanted to be able to treasure my disability, which is not on the list of options for how to feel about being disabled. Society prescribes a lot of things when you’re born with a disability. You are an inspiration, from birth (no accomplishment required). You are a burden (no actual burdening required). You are a pity (no actual sadness required). You will not have success, love or general life fulfillment. It turns out that no one actually knows what those things are even comprised of, but they are very sure that, as a disabled person, you will not have them. And the entirety of society is very vocal about this viewpoint. You can’t have or do anything, but you should believe and represent that anything is possible. I didn’t want any of that on me. I wanted space to figure my life out for myself. I wanted to hide my disability so they couldn’t ruin it.
I write my own story
I figured it out eventually - that I was disabled. That I could treasure it however I wanted to. Right around the time that I figured that out, I also figured out I was an artist. I celebrate myself in the form of a million selfies taken while travelling all over the world, while on the greatest and wildest adventures I could manage, loving the greatest loves while doing it. I discovered that I could shape the story of what my life meant with writing. When I commanded the words, I could write how I actually felt, what I actually wanted, how much of a treasure my body is to me - it wasn't up to anyone else. I had the power to evaporate the narrative dumped on me at birth.
I am free to treasure myself exactly as I please
I still hear the sentiment: "good for you! If it was me, I’d rather die.’ on a fairly regular basis. I live in Spain, I am a paraglding pilot, I have an incredible and growing audience of intelligent and talented readers, I make my own magazine, I have been all over the world. But, still, my body makes my life so inexplicable to others that they can’t imagine joy or ease there. That's a limitation I don't suffer.
Now I am not a teenager. I don't worry that my private experience doesn't match other's perceptions. I know that the outside world's lack of imagination can not ruin it.