Published by The New York Times
My mom and I had routines. We walked everywhere — to the grocery store, to the bus stop for doctor’s appointments and to visit family, and to my school each morning. My favorites were our walks through Lincoln Commons, commonly referred to as Lincoln Park, in our hometown, Malden, Mass., where we’d sit and tell stories underneath our favorite tree.
Before it became a park, Lincoln was the site of an elementary school. A tree had grown inside the school, and the city was planning to demolish the building along with the tree until environmental activists fought to save it. The school was torn down carefully to preserve the tree, and the park was built around it.
Our walks were short, often truncated by pauses, because my mom had Ehlers-Danlos syndrome, a connective tissue disorder that often causes breaks, dislocations and other injuries, and can also cause chronic pain and difficulty walking and standing. Our life was built around my mom’s disabilities; she also had a visual impairment, which was why she couldn’t drive and we walked everywhere.
It wasn’t long before we learned that I am also disabled, inheriting some of my conditions from my mom. When I couldn’t walk along a balance beam in preschool, my mom started getting medical professionals involved. She became my biggest disability advocate and champion, getting me set up with school support services, occupational and physical therapy, and a therapist I could talk to about the difficulties of being a disabled kid.