When I lived in Spain, I learned to paraglide. One day while waiting on the wind at take off, another pilot said to me, "I have this sense of awe seeing you. I have this idea —I think we all do— that, well, you're in a wheelchair, so you wouldn't be here flying."
A flying wheelchair is extremely cool. It is visually ridiculous and magnificent to see a wheelchair floating alone in the sky. But we were both sitting at the edge of a mountain in Andalucia, some 600m above sea level, waiting to run off the edge into blue nothing. Why were any of us there? It wasn’t especially unlikely to me that I would be there.
I’ve written, “All paragliding pilots are basically disabled vultures. They don't become more bird-like the more they fly. They are never any less dependent on their glider to access the sky. They don't gain whatever sense the vulture has to detect thermal air. They invent technology to augment the limits of their abilities.” What is the true difference between my wheels and his harness? His need for augmentation is intrinsic to the sport. My need for augmentation is intrinsic to my life. Perhaps, to him, that meant more of my life was on the line. Or, maybe it was that, requiring augmentation-for-life meant I had less life to gamble and so it was a greater risk.
I was born disabled, and as often is the case, my story starts with my family crying over me, for the future I would never have. Doctors, focused on medical interventions, tried to limit expectations with dire predictions. And with scant other templates outside the medical world, those predictions and interventions acted as the framework for my entire becoming. All while everyone else was either offering condolences for the misfortune of my life or declaring me a hero for existing.
In the past I have said, ‘Growing up, I didn’t have examples of people like me being successful, being in relationships, pursuing their dreams, being in authority, being equal to nondisabled people, or being fulfilled in ways that were meaningful to them.’ These days I would add that no one with authority or influence over my life had any examples either. And that might have been just as, if not more, important. Because people don’t just imagine the limits of my life in the privacy of their own minds. They often have the ability to enforce those imagined limits. They can make them real. And then I have to live with them.
I have written, "Ableism is a story being told about disability by people who are not disabled. it leads to a lack of accessibility, which leads to the impossibility of inclusion. Inclusion is accessibility treated as a process based on a wide range of stories about disability told by disabled people. Accessibility is emotional, interpersonal, narrative. It's not just ramps. It's the imagination of the entire society shifting to include you. It's the experience of feeling welcome, of being expected, of having a role to play and your contribution acknowledged and valued. You, speaking for yourself. Acting for yourself.”
I am now in my 40s, and find that alongside progress (and growing examples of disabled people living all kinds of lives more publically than ever before), we also have highly influential public figures stating that the deaths of disabled people is expected, acceptable —”encouraging”. Not to any real shock or concern. Instead, the public openly echoes, ‘of course this is encouraging.’
…I have this idea —I think we all do— that you wouldn’t be here …you’re not supposed to be here …you’re supposed to be …dead.
I didn’t have positive examples of disabled life growing up, but I did have myself as a guide. I had my thoughts, my desires, my physical sense of my body as I lived in it. Which is a lot more than nothing. And nothing, it seems, is what everyone else has. In the absence of proof otherwise, it is assumed the sentiment is true: disabled lives are so limited, they might not be worth living.
And in the presence of proof otherwise, we get ‘awe’.
“That sense of awe you have is the feeling of your mind opening. My takeoff isn’t fundamentally more meaningful than your own.” I told the pilot. Meaning: that’s not awe, you were just wrong.
If you’ve read my book, If You Really Love Me, Throw Me Off the Mountain, you’ll recognize pieces of this story. I was asked to contribute to Inclusion Canada’s This is Ableism campaign and I couldn’t have said it better (than) myself, so I adapted the story for the campaign. Tell me, If you had the chance to share how ableism affects you, to be heard by people in different sectors of society (like medicine or transportation), what would you want them to know?