love & disability
I am a disabled person in love with disabled people. And it's amazing to me no matter how many times we move through the cycle of "ugh, why am I broken, I hate myself" to "Ugh, why is the world broken, I hate it" I'm always surprised when I'm gently guided off that miserable merry-go-round by crip love.
Today my migraines have been bad. Looking at screens aggravates them and I work in tech as a designer. I have to plan around my meetings and deadlines, take frequent eyeball breaks, take medicine, and just power-through to get my work done. In addition to the pain, I now experience dread whenever I know computer time is approaching. I am experiencing a sense of profound loss since computer screens were the first places I tasted any freedom in my life, and they have held so much promise for me ever since. I'm glad my body has started to be sanctuary for me in the last few years, so I'm not losing my ONLY resource for comfort, despite feeling like I'm losing a significant one. I'm grateful for audiobooks and screenreaders for their role in giving me access to the love of words that's so fundamental to my well-being and growth.
Earlier today my friend who has non-24, a sleep disorder which means that her circadian rhythms are irregular and thus makes her biologically anti-capitalist, was struggling with the same heartache that comes with butting up against the expectations of a time-based urgent culture, where when and how we show up is often used to create narratives about how much you care, how much you respect the people who may have been waiting on you, etc.
There's finally a medication for this rare disorder, but it's only just been FDA approved and it's $1800 bucks a month. She's already been denied coverage by insurance once.
The thing about her disability is that she's able to live & grow if she can just sleep when her body is tired. But after 4 years of loving her and seeing up close how much she has to power through to have a basic level of overlap with the expectations the world has of her, it becomes pretty evident what oppression looks like in somatic terms.
Today she said this to me, and I really, really needed to hear it:
"It's clearly how their system is designed, and how the players are programmed to behave, but with a gentle reminder that I am a person, I have different constraints to accessibility than most, and that I really am trying my hardest, things seem to tend to work out"
Every place I visit I look for the ramps. I look for the cracks in the sidewalk. I look for the restrooms, I look for the AC. I look for the electrical outlets. I look for the distance from public transit. I look for hours of operation.. In those little gestures of access or lack thereof I can see the faces of my family that can or can't share them with me. Accessibility in spaces is access to love. Access is love.