Summer Camp

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.

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20 thoughts on “Summer Camp

  1. As always, I have learned from your writing, and have been reminded of my own summer camp experiences. Summer camp was not necessarily positive for me, in part because of a lack of the camaraderie you describe. It was available, but I never felt it was in reach.

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    • I’m sorry you did not have the same camaraderie. It was such an important part of me learning who I was, and I can’t imagine life without the experience. Thank you for the comment, and for reading – even if your memories are not as nostalgic as mine.

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  2. You reminded me of all the fun of summer camp and made me appreciate how much richer the experience is when you are finding a community you don’t find at home. Beautifully written piece.

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  3. You have opened up a new world to me. I have been thinking of a new friend whose 37 year old son requires a wheelchair, around the clock care which his parents perform without assistance. I understand why their family doesn’t come to visit us (our house is not accessible to her son) and why she can’t visit on the spur of the moment.

    I am so glad you had the summer camp experience. Wouldn’t we all like to go back briefly to our more care-free times?

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    • Oh, those parents! I want to help them access services – because the advocate in me wants to make sure their son is set for the time when they can no longer provide the assistance he requires. I’m glad you are able to be a supportive friend to them.

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  4. I’m sure there is a picture of all of you somewhere? I was hoping to see it. We all cried a little, and cheered, too, to see you at the end of the week, knowing the importance of being away from home meant for fostering independence.

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    • I looked for a photo – but the ones I have are all blurry. There must be a one somewhere, but I’m sure it is packed away in a box and I couldn’t find it. I searched for the article which featured Jen and me, but couldn’t find it. I will keep looking!

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  5. I love this post–reading about your summer camp experience is heartwarming and reminds me of my own. I went to a camp for gifted kids (we affectionately referred to it as “nerd camp”) where being smart wasn’t just okay but cool. It wasn’t weird to use multisyllabic words or rattle off facts about our latest hobbies. We took classes on a variety of topics from Israeli film to censorship in rap music to improv acting. My fellow campers became some of my best friends, and seeing them every year was so comforting. I grew up so much there, and I learned to come out of my shell and be unapologetically myself. Summer camp is such a unique place, and I agree that adults need to have retreats like that as well.

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  6. My Nathan will be leaving for Rockaway Beach this Wednesday, where he will be a cabin host / game leader / group therapist at a camp for students who stutter. He is sincerely looking forward to bonding with guys he has yet to meet–he’s like that. Thank you, Denise, for the reminder that camp can be awesomely life changing. I will read your article to him. Er, when he comes out of his bedroom, that is. He’s in there writing reports and cramming to take an exam early because of camp.

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    • Did you know I’m a speech-language pathologist? I don’t practice any longer, but some of the work I most enjoyed was the time I spent with the Capital District Council of Fluency. The kids he gets to lead this week will bond with each other in ways that will change their lives. Thank you for sharing my blog with Nathan!

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      • You are? Nathan is loving this program (Pacific University), but it sounds like summer school for grad students is the worst. He has worked at two camps for the past two summers and yes, the bonding is life-changing. I’ll let him know. He’ll be excited to hear this.

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  7. Thanks for sharing this experience. It seems vitally important, even more so for kids with disabilities, to be able to find “their people,” if only for a summer.

    I never went to summer camp, but that’s why I wish I had gone; I still harbor a fantasy that some day I will find my “people.” I had friends in college who loved it and for whom it was a formative experience to be remembered all their lives. My husband, who grew up in Germany, says that it’s not very common in Germany to send kids to camp. We sent our kids to camp to learn German this summer 😉

    I didn’t go as a kid, but I’m hoping that in a few years I will be able to go to music camp as an adult. Better late than never!

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