Summer is here in upstate New York. Many of my friends are sharing social media updates about their children and summer camp. Seeing their photos makes me nostalgic for my own summer camp experiences.
As a child, I attended a summer camp for kids with disabilities. For seven years, my parents drove me to and from Wagon Road Camp so I could spend two and a half weeks with my “camp friends” while they had a (well-deserved) respite from me.
I loved camp for many reasons. Camp had fun activities such as horseback riding, swimming and music. Camp gave me opportunities to explore my own unique abilities and taught me how to instruct other people to best help me. Most importantly, camp provided me with my first peer network of other kids with disabilities.
Growing up in a small town, I did not have interactions with other kids with disabilities. At camp, every camper had a disability. There were other kids with muscular dystrophy, cerebral palsy, cognitive disabilities, sensory disabilities and more. Some kids were more independent than me, and some needed more assistance.
I had two best friends at camp – Jen and Steph (not the same Steph who is my bestest best friend). The three of us met in Yellow Cabin our first summer at camp and instantly bonded. When we were together again the next year in Pioneer Cabin (we were moving up!) we asked the counselors to move our beds so we could all be in the same corner. We maintained this arrangement when we aged out of Pioneer and moved to Purple Cabin, home to all the cool chicks in chairs.
Each of us required different levels of personal care assistance. Steph and Jen required more help with dressing and bathing but were more independent with mobility than I was. I was still walking, but climbing hills was difficult and I fell at least once each session. Jen let me use her power wheelchair for support, slowing down so I never had to walk alone. Steph needed help eating and I often sat next to her at meals so I could feed her if a counselor got called away. The three of us always helped each other as we could without hesitation.
Because Jen and I had progressive neuromuscular disabilities, our functional ability changed each year. We weren’t the only campers to experience this. Everyone had to adjust to friends who had new equipment, or needed different levels of assistance. And every year we started camp wondering which of our friends would not be coming back for the summer.
This early recognition of the frailty of life made me more appreciative of the opportunity to develop a crucial peer network. At home, I was unique – the only student with a visible disability in my small school. However, at camp I was surrounded by kids who were just like me. They understood what it was like to always arrive through another entrance, to have the new kids stare and point at you when you entered a classroom, to know a cold could develop into pneumonia which could be a death sentence.
Quite simply, at camp I was with others who “got it.” I didn’t need to explain myself and my reaction to disability. If I spoke about frustration caused by lack of physical access at a friend’s house or school event, my camp friends all nodded in understanding because they had been excluded from full participation also. It wasn’t that we were upset at our friends for living where they lived. We just didn’t like our disabilities preventing us from having the social lives we wanted, on the terms we wanted.
Together we learned important lessons of acceptance. As a diverse group of mixed disability types and racial backgrounds, we learned respect and tolerance for others. Sure, we were having fun in the pool, in the music building, at arts and crafts. We were also building our self-advocacy skills, discovering our independence, and finding our identities.
I would love the opportunity to escape the adult world and return to summer camp for a week with my friends. How relaxing to have help just arrive whenever I need it instead of recruiting, training, scheduling and managing my personal assistant staff. What I wouldn’t give to spend another week with Jen, who passed away almost ten years ago. There are so many times I long for her wisdom and guidance, the advice she used to dole out so freely during conversations in front of a bathroom mirror while I stood brushing and styling her long blonde hair.
Children with disabilities still go to summer camps across the country. I am depending on this young group to join the disability movement and move us forward towards equality. But this summer, I hope they just enjoy the freedom of being a camper with their friends.