My CAMP "Why"
By Michael Maffei
CAMP’s mission means so much to me. This is not by virtue of my position or the fact that I earn my paycheck from CAMP, but it is something I care about because it has had such an impact on my life. I came to CAMP in 2003 as a camper, and honestly, I didn’t believe for a second that I needed to be here. My mom had signed me up and told me that it was a camp for children like me – with disabilities – but I never saw myself as “disabled enough” to need to go to a CAMP. I thought I kind of flew under the radar if you will, which is a silly thing to think. Call it imposter syndrome, call it whatever, but I didn’t know then how badly I really needed to be at CAMP.
Naturally, as a headstrong young person, I didn’t agree with my mom’s instance that I needed and would be coming to CAMP. So I hatched a scheme. My brother would be going with me, and the night before we were set to leave, I pulled him aside, and we conspired to be on our absolute worst behavior. We would do whatever it took to get kicked out of CAMP. When we arrived at CAMP, it had just rained, and my mom left us on the playground when she had to go to her med staff orientation. We took this as an opportunity to use the mud to disguise rocks inside the mud balls and build a rather large arsenal of projectiles we planned to throw at anyone who tried to make us get off the playground. Our thought was simple, come out causing problems on day one, and there would be no day two. With that stand-off supply of soon-to-be projectiles, we hunkered down on the highest level of the old playground and waited.
Some time went by, and before too long, this unassuming person came up to Kevin (my brother) and me and started making conversation. She wasn’t asking us to leave, and she wasn’t trying to get us to get rid of the mud balls. So our primitive thinking went, and there was no need to throw anything at her. She was talking to us about whatever we were interested in, and before long, a second person joined us, and the conversation continued. The first individual kept up the conversation seamlessly, and the second, a young man, joined us. After about an hour, they asked us if we wanted to get juice. And at that point, having been hunkered down on a playground for several hours, we agreed to get juice. This first person turned out to be my very first counselor, and the second was Kevin’s counselor.
After juice, there was a constant stream of distractions – putt-putt, playing basketball, and playing cards on the dining hall porch. Our little plan was quickly fading to the back burner. As Sunday went on, I forgot all about my plans of getting kicked out. Instead, I was focused on the carnival we were scheduled for that evening and this prize box my counselor kept telling me I could get to if I won enough tickets. I was really into baseball, and I asked her if there was anything baseball-related in the prize box. It turns out there was a reusable cup with a bendy straw with a red bottom and a baseball top. I forgot all about getting kicked out and was now just determined to win a trip to the prize box and claim that cup.
Something I was unaware of at the time and vehemently denied was how much I needed to actually be at CAMP. In my daily life at the time, I was the only person I saw or knew of who was dealing with all the added challenges of having a disability. In fact, looking back on it, I can say that I felt like I was the only person in the world dealing with these problems. I was alone. Neither my brother and sister nor my friends had to travel to places like New York, Saint Luis, or San Francisco to undergo operations from specialists. They were not constantly pulled from class to attend a long list of doctors’ appointments where they would be poked and prodded. Where they would be made to feel like a science experiment on display for whatever resident or intern doctors were working that day. They didn’t have to give up Summer, Winter, or Spring breaks to have surgeries with longer recovery times to ensure they wouldn’t fall behind in school. These were experiences that I felt like I was enduring alone. Let alone the daily challenges of having a very apparent disability – the stares in grocery stores, children pointing or asking far too pointed questions about why I looked different.
Again, this is not something I realized at the time, but when you feel alone in an experience, it tends to turn your heart cold to the world. To make you angry and bitter. And this was happening. I didn’t know it at the time, but it was. It coincidentally was something that my grandfather was very afraid would happen to me.
When I was born, I was the first of what would turn out to be three of the Ryan grandchildren who would be born with a disability. Being the first and being obviously very different than my siblings or cousins, my grandfather was concerned about what the future would look like for me. My grandfather was a mountain of a man, born as the first of thirteen children in a house in Ireland that had neither running water nor electricity. He was someone who had a deep passion for education but had to give it up after the 6th grade to help earn money for the family. After the Second World War, he moved to the US and got a job as a gardener. He would get married, raise five girls with my grandmother, and build a life. Two of his daughters would become doctors, one a nurse practitioner, all would get the educational advantages he never had. By virtue of his size, if he had allowed the lost opportunities of his life to make him bitter or angry, he would have been able to make everyone in his life feel it. But he never did. He celebrated the opportunities that his daughters got that he did not; he never allowed what made him different to be something that turned him against anyone. He was kind, always gentle, and selfless. He hoped I would respond to the adversity in my own life in kind but was concerned that these challenges would be too much. Before coming to CAMP, this was, unfortunately, the path I was on.
Flashback to CAMP; the week is moving right along. Despite myself, I’m enjoying the activities – especially Archery and Swimming. My counselor and I are really bonding. She’s asking me about all of my interests and letting me talk about them as much as I like. Pokémon, baseball, and video games, to name a few. In turn, I’m asking about her life. I can still tell you twenty years later that she went to Saint Mary’s Hall, that her favorite subject was Japanese, and that she aspired to become a doctor. The bond she created with me has cemented all these details in my memory.
I had my real “ah-ha” moment on Tuesday afternoon at CAMP. We were getting ready to get in the pool, and as someone who has had over 30 operations, I have always been self-conscious about being in swim attire. My torso looks different than most; my scars are on full display; it always made me feel like an insect under a microscope when the other children would take notice. So I developed this ritual, if you will, shirt off at the last moment, with my arms strategically placed over the largest scars until I got in the water. I was doing just this, waiting for the lifeguard to finish the rules, when it hit me. No one was staring. For the first time in my life, I wasn’t the unfortunate center of attention in this setting. I was just another kid, just another face in the crowd. Another excited camper waiting to enjoy the activity.
This realization made me feel like I belonged. For the first time, I wasn’t alone in this experience. The bond with my tribe really increased after this. I talked with the other boys in my tribe about their challenges with scoliosis, spina bifida, and their disabilities. I continued having fun. When the week ended and it was time to pack up and go home, my brother and I were both in tears. We didn’t want to leave our counselors; we didn’t want to leave CAMP. We’d found something very special.
Kevin and I would return as campers every year until we were old enough to volunteer. We then became part of the seasonal staff. The longer we spent around CAMP, the more of a profound impact it had on our lives. For me, this manifested most evidently in a diminishing feeling of isolation. I now knew that there were other kids like me in the world and that I was not alone in this experience. There were people going through things just like it. What it also taught me was that even though I was different, there were people in the world who would see me for me – not my disability. This helped me let go of a lot of the anger and bitterness I felt toward the world. In short, it helped avert my grandfather’s greatest fear.
CAMP’s impact on my brother, in the scorpion tribe, was also profound. It put him on a path to becoming a special education teacher. It made CAMP’s mission an integral part of who he is.
CAMP has had a profound impact on my life. It was a catalyst for my personal growth as a young man. It taught me lessons about friendship, loyalty, grit, resilience, positivity, and love. As an adult, I feel its mission very deeply. I feel, in many ways, it's my responsibility to contribute to its continuing mission. No one should ever feel alone in the world. When the next generation of children with disabilities come along and wonder where their place in the world is, if anyone will ever see them for who they are, CAMP will be here to show them they have a place. That CAMP will be there to show them there are people in the world who will see them.
I see my cousins and my own younger self in our campers. I see my brother in our staff and volunteers. All searching for something, belonging, purpose, a path. And each time, CAMP is there to provide them with maybe not what they were expecting, but certainly what they need. CAMP has such a positive impact on the world. We often say that it’s a shame the rest of the world is not like CAMP. That the world is not a place where dignity, respect, and belonging are as valued as they are here. But the longer CAMP goes on, the greater its transformative impact will be on the world. There is a future for children and adults with disabilities because of places like CAMP.