I grew up with a disabled mom. It meant that we didn’t have a car, because my mom was visually impaired and couldn’t drive. We walked to the grocery store weekly, took the bus to doctor’s appointments and the mall, and occasionally took the train into Boston.
I didn’t think much about my mom’s disabilities until physicians started to suspect that I was disabled, too. I failed balance beam day at school—I couldn’t walk in a straight line, one foot in front of the other, on a raised wooden beam a few inches above the floor—and my doctors noticed I had low muscle tone, poor coordination, and difficulty balancing and walking up and down stairs.
Almost immediately, my mom became my biggest advocate, fighting for me and teaching me to fight for myself. Having a disabled mom not only taught me how to advocate, but also helped me build a sense of identity from a young age.
She was one of the only disabled people I knew as a kid – my first exposure to what my life might look like as a disabled adult. Even though my mom and I rarely talked explicitly about what it meant to be disabled when I was growing up, there were moments that I felt it. I inherited my severe Raynaud’s syndrome from her, and in the winter, we’d bundle up head-to-toe in snow gear, go outside for a few minutes at a time, and then rush back inside to warm our hands. Since I was younger, I could usually last through a few more rounds of snowman building than she could, and she’d be waiting when I came back inside, with a cup of hot chocolate and her warm stomach for me to put my purple, swollen fingers on.
My mom showed me, early on, that she was a great role model and a strong, independent person even though she navigated the world differently than able-bodied people, and had different access needs. She was one of the people who never tried to cure me or fix me. She was happy with me as I am.
She didn’t push me to ride a bicycle when I was the age that everyone in the neighborhood could ride circles around me. And because I’m also autistic as well as physically disabled, my mom pushed against physicians who recommended behavioral therapy to stop me from stimming while I was telling her about my day at school. Unlike others, she never asked me…