The following post began its life as an article published elsewhere, years ago (my daughter is 23 now), but it’s a good introduction into Camp Attitude, the wonderful camp in Central Oregon dedicated to providing a place for families with children with disabilities. There have been some staff changes over the years, but if you have a child with a disability, it’s worth checking out.
I have a daughter with a disability. She’s 17 now, and her life has been pretty normal, all things considered. Her disability is called Osteogenesis Imperfecta (OI), and is commonly called brittle bones. She’s very tiny and very fragile. Over her lifetime, she’s broken almost every bone in her body. Many fractures have happened spontaneously, with little or no impact or stress on the bone. She has experienced some impacts—like falling off of a table while strapped into her car seat—and didn’t break a bone. There is no predictability to the fractures, but they all hurt, and they all set her back physically.
As a result of her disability, people are generally very fearful around her. No one has ever wanted to be responsible for fracturing her. No one even wanted to be around when she fractured. The elementary schools she attended did an excellent job providing her services, but the middle school took a cowardly stance on pretty much everything we asked for. The person in charge of middle school special education seemed to take great pleasure in telling us “no.” Our main request in middle school was for appropriate physical education, but she didn’t have a single PE class in middle school. High school presented different challenges, different personnel, but continued resistance to PE. Educationally, she had every accommodation she needed. Physically, no one would touch her.
Outside of school we faced similar problems. In church, the Sunday school teacher left her sitting in a corner in her stroller for the entire hour—facing a wall. Shortly after that, we stopped attending church. Finding childcare for her was nearly impossible. No nursing agency would staff the position, no daycare center would even consider taking her, and at-home babysitters wouldn’t take the chance. In nine years, I found one babysitter willing to do the job, and she was more than capable, but her university class schedule changed drastically one semester and she wasn’t available. That was the last babysitter we had. That was eight years ago.
We’ve heard a lot of “no”. Many variations have come across our path: “I’m not sure that’s our job” and “We’d better not” and “let’s look at it again next year” and “the school is not prepared to”. Would you be willing to send somebody out to talk to me about being a nurse for my daughter? No. Does your agency serve children with just physical disabilities? No. Can my daughter get a ride with you? No.
We’ve gotten used to it. I got to a point where I assumed any activity, at school or outside of school, would require at least a meeting in advance with everyone involved, a promise to provide all accessibility myself, and the assurance that no one will have to handle my daughter. I could have carried a copy of these terms around with me for handing out if the situation arose.
So when we heard about Camp Attitude’s OI Camp, my response was lukewarm. We knew we’d already be in Oregon the weekend before camp. My daughter had never been to camp before, and it was something she’d *always* wanted to do, but now she was 16 years old. Would she still enjoy this kind of thing? I saw a long week of a moping teenager that had to hang out with her mom because mom was providing all the accessibility. I could probably provide all these activities myself at home, since I was going to have to do all the work at camp anyway. I hesitated. I hemmed and hawed. And then I reluctantly signed her up, building a cross-country road trip into the plan so camp didn’t have to be the centerpiece of the summer, just in case camp was awful.
And yes, I tried to have a pre-camp meeting with the camp director, Louie Kazemier. I tried to explain how fragile my child was, and how she was a teenager, and how this was her first time at camp. His response was surprisingly casual. He didn’t seem at all concerned, which in turn made me concerned. Maybe he didn’t really grasp the gravity of my daughter’s condition. After I hung up, I shook my head, expecting an unpleasant week.
On July 11, we arrived at Camp Attitude for our first day at camp. We unloaded the car and wandered around a little, making contact with my daughter’s “buddies”, locating the dining hall, and wondering what would come next. Both my daughter and I were tense, pretty sure we’d have to essentially hold our breath the whole week and pretend to enjoy finger painting. We had dinner in the hall, listened to some lovely music, and then this guy got up to speak. He was introduced as Louie, and my first impression of him was that he reminded me of a better-looking Sammy Hagar, only less rough around the edges.
He told us the general rules, politely requested participation in dinner and the post-dinner entertainment, and spoke his awareness of the great fragility of our children. There would be a parents’ forum later on where all of us (understandably) over-protective OI parents could air our concerns.
And then he announced that we’d be doing laser tag that night. LASER TAG! Perfect! There is little chance for her to get hurt playing LASER TAG! My daughter found some people she already knew, some she just met, and they made a team. I watched. I took pictures. She started to relax, her smile becoming more genuine as she started picking off opponents. She laughed. I took more pictures. Then she went off with her buddies and I was left with nothing to do but play basketball with the guys.
Over the next few days, my daughter did crafts, stayed up late, played on the swings with her buddies and other campers and their buddies, played basketball, took long walks in the woods, and generally disappeared. All day. Occasionally she would come and find me for something (usually money) but most of the time I had *no* idea where she was. Kind of like when my older son went to camp years before.
Camp Attitude took a mid-week “lake day”, when we went down to Foster Lake for swimming and tubing. We plopped ourselves on the beach. She’d signed up for the boat ride and for “tubing”, which I figured would be a lazy ride in circles on a nicely-inflated-very-safely-and-gently-towed-tube. After baking in the sun for a few hours, we went to the dock for our turn on the boats.
And for the first time all week, I thought “Nuts, this isn’t going to work.” I couldn’t figure out how I was going to get my daughter into that boat. I’ve been on boats, but my husband has always helped me with the transfer. This was a choppy lake with a speedboat, not our little dinghy at the placid lake, and I didn’t see this ending well. I surveyed the dock, the boat, tried to get a handle on how to proceed, and then, with butterflies in my stomach, picked up my daughter. When I turned to the boat, I found Louie straddling the gap, one foot on the dock, one in the boat. Another man was holding the boat firm against the dock. Louie held out his arms and said “Here, give her to me.” After a moment’s hesitation, I turned over my tiny fragile girl to this man who was a complete stranger.
He didn’t hesitate or show any concern or fear. With great care and great strength, he turned and lifted my daughter safely into a seat on the boat. The man holding the boat didn’t let the shift in weight affect the position of the boat; it held firm. As if they had done this dozens of times with fragile tiny children, these men capably and simply placed my daughter in the boat. She was safe. For the better part of an hour, we charged around the lake, spray in our faces, towing an enormous tube holding four people urging us to go faster, screaming with glee. And then halfway into the lake, Louie stopped the engine, helped the tube riders onto the boat, and then it was our turn. Right there in the middle of the lake, we transferred my daughter from the boat onto the tube.
Like it was no big deal.
My daughter and two of her friends and I screamed and laughed and egged on the driver, going faster than I ever thought my daughter would get to go. I screamed with excitement, but also with the release of all the tension and worry and fear that I had held in reserve, just in case the camp staff’s attitude was false-confidence borne of ignorance. There was no ignorance, only a certainty that with a willing heart and a little effort and creative thinking, anything is possible.
I’d watched Louie and his staff all week interacting with the kids and with each other. With the relaxed demeanor of seasoned, experienced professionals, every single person at the camp did their job without a moment of panic, fear, anxiety, or wariness. The camp buddies were quickly just like family, the camp staff who were always preparing for *some* activity, the people hauling, cooking, serving, cleaning, driving, everyone was friendly and helpful and very matter-of-fact in everything they did. In the rest of my life, everyone we met was afraid of my child, and many stared in wonder at her mere existence. Here, we were in a sea of people with OI, and not a single non-OI person stared. The general attitude seemed to be “yes, we see you have a wheelchair. Now what would you like to do?”
And for the first time in my daughter’s life, we were greeted with an entire staff of people who simply said “yes”. Do you want to ride a horse? Yes, we’ll figure out how to make it safe for a little girl whose tiny short legs don’t reach to the side. Do you want to swim down the rapids in the river? Yes, we’ll figure out how to get down the muddy slope and over the slippery rocks so you can have some fun. Do you want to take a really fast ride on a tube? Yes, we’ll figure out how to get you from the boat into the tube—in mid-water, like everyone else—and then race around the lake. Do you want to ride on a swing? Yes, we’ll provide an accessible swing set so three kids in wheelchairs can swing at once. Do you want to ride in a hot-air balloon? Yes, we’ll bring in a fully-accessible hot-air balloon basket and experienced balloonist.
Yes. Every time we turned around, the answer was yes. My daughter was able to do almost every single typical camp activity we’ve heard of, WAY beyond crafts and macramé and leatherworking. She did the BIG ones, the scary ones, and she had a BLAST.
We’ve lived a whole life of “no.” Camp Attitude was the first place I’ve ever been where the first answer is always “Yes”, followed immediately by “I’ll show you how we’re going to make that happen.” And then, they do. Nothing is impossible at Camp Attitude. No one is too fragile or too severe or too medically involved. The staff at Camp Attitude, led fearlessly by the inimitable Louie Kazemier, lives their belief that everyone should have the chance to TRY, to DO, to ENJOY. Everyone should have a chance to turn away from the fear that hounds their everyday life and, with a little willing assistance, just be a kid.
This is more than a gift, more than just fun and excitement. She saw what was possible.
For a week, my daughter got to live in a world of “yes”.
She will never be the same.
This was so wonderful it made me cry with joy for Sophia! ❤