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Take Risks, Ride the River
Take Risks, Ride the River
By Barbara Buswell / April 5, 2019
Note from the editor: Today's blog features a keynote address given by PEAK Parent Center's Executive Director, Barbara Buswell, at the 1991 TASH Conference in Washington D.C. It has been edited to fit parameters for the PEAK Parent Center Blog. While it is nearly 30 years old, it still holds relevance today. We, at PEAK, continue to push for inclusion in all aspects of life. As you make plans for spring break, or schedule summer vacations, or ride the river of life, keep this article in mind. With the right attitude and supports, anything is possible!
Last June, our family took a river trip to Utah for several days. Since we live in the West, a river trip isn't a very exceptional experience because a lot of families out here take rafting trips. But we had a few exceptional parts to our trip, and the most unusual part was that there were three grown-ups and nine teenagers on this trip down the Green River in Utah.
We planned this trip ourselves since my husband is an experienced rafter. As with all trips, this adventure was a lot of work from initial planning to getting to the river. Once there, one of the first challenges was getting everyone up in the morning and orchestrating the teenagers to help out with our day-to-day river living. Everyone had to learn to do the daily chores that happen in the wilderness which included everything from setting up tents, cooking for 12 people, setting up the latrine (toilet), and creating a community campfire. These were the daily jobs which were followed by packing everything back up the next morning and loading the rafts so we could set out again!
The goal the first day was to get on the river at 9:00 am. We actually "put in" at 1:00 pm because orchestrating the kids and gear proved to be a much lengthier endeavor than we had imagined. We proceeded down the river caravan style with our four rafts and two kayaks. We basked in the sun, had water fights, battled the wind, and supported kids' communications when anyone got too tired to paddle or when they were tired of sitting in the same raft with each other.
At day's end, we dragged everything back off the rafts to set up for dinner, learning to prepare all kinds of river delicacies. Other skills learned on the trip were bathing and hygiene in the wilderness, escaping from endless gnats, dealing with sunburn, and finding escapes from the group for a little solitude. The kids enjoyed the evenings exploring the canyon, finding snakes and other wildlife and creating some theater in which everyone acted. After dinner, everyone sat around the fire to reflect, build sandcastles, talk, and dream about the good life. As you can imagine, the adults savored these evenings after such intense days.
On the last day of our trip, we had a particularly notable experience. As we unloaded our boats, several other rafts floated up to the takeout point as well. The kids called to me that amazingly there was another raft on the river with a person who used a wheelchair. We soon noticed that actually there were three rafts who had people with disabilities in them. It was a "special" raft trip.
As everyone was unloading rafts, the leader from the other group came over and asked me, "Oh, you guys do trips for people with disabilities too?" I said, "Oh no, this is a family trip." She continued to ask a barrage of questions:
How long have you been on the river?
"We have been on seven days."
How did you feed your son with a disability?
"We pureed food with a food grinder, used Wilson's g-tube for feedings, and washed his syringes with the other dishes using boiled river water with a little Clorox."
(Since eating and preparing food was hard for their clients, she didn't see how feeding issues could be addressed.)
Where did your son sleep?
"Two of his tent mates, whoever were available, lifted Wilson in and out of the tent in whatever fashion they figured out that worked for them."
(Individuals in her group didn't spend the night on the river since some of their clients used wheelchairs and wouldn't be able to get in and out of tents easily.)
Who on this trip helped your son with his physical assistance needs?
"We all supported him. His dad and I did most of the feeding and medications, but the kids worked in work crews, and his team on a given day did most of his other physical assistance supports and helped him participate in whatever tasks their crew was assigned to." (Since their clients required at least one adult per client to meet their "intensive" needs, this wouldn't be possible she commented.)
How did you keep your son from getting too hot?
"Well, we all wilted from the heat in the middle of the day, but with squirt guns, swimming, water fights, and tossing Wilson in the river when he told us he was hot, heat didn't prove to be a problem." (Her group was very concerned about heat stroke and heat exhaustion for their clients.)
What about physical or occupational therapy while he was on the river?
"Well, we had no formal physical therapy, but we had swimming, floating in the river in a life jacket, stretching out on a hot raft tube, bumping through the rapids on a big cousin's lap, and if he wasn't too sunburned, he might get a lotion massage in the evening." (Her clients with physical disabilities needed "traditional" therapy to keep their bodies working.)
The woman ended the conversation by stating that her clients, because of their needs, couldn't tolerate such a long trip so they only took them on four-hour trips. She added that she "admired" us and was glad that our son "had the ability to participate" with us on this trip.
The leaders of this "special" four-hour trip were friendly, nice people, sincerely trying to do good things for their clients with disabilities. But, this group context felt wrong. Interestingly, as we were driving out from our week on the river, toward civilization and a hot shower, my niece remarked that she thought it was very strange that the individuals in the special group that we saw at takeout - many of whom could walk, talk, and do things that Wilson isn't physically able to do - looked so disabled. She added, "I think it's because there were so many grown-ups hovering around those people."
The points from this river trip story are simple. Wilson wasn't a client on our trip. It wasn't about him having an ability to participate on the trip. He was another kid, a member of the family, one of the nine cousins on this trip. We didn't have any adult support staff assigned or available to hover. Wilson didn't need that much adult support (though we adult leaders felt we could have used a bit more support)! The reality was that Wilson's needs definitely took extra thought and a little extra work just like every day in our lives. However, in the vast logistical processes of living in the wilderness for seven days with nine kids, assisting Wilson (whether by pureeing his food, offering a hand with physical assistance, or including him on a work crew) required only tiny extra steps. Besides, we pulled out Wilson's umbrellas for sun protection, used his food grinder to create guacamole and hummus for the group, and loaded up his wheelchair to lug gear to the campsite from the river, every day.
The big deal about our trip was the attitude and questions we experienced from other people, often professionals. When some learned that we were going to take our trip, they got real quiet and in a serious tone asked me questions like:
- "Why would you take Wilson on this trip on such a big river in another state?"
- "Don't you guys want to get away from your responsibilities and have a break?"
- "Won't it be too dangerous for him with the rapids and no people around if there were problems?"
- "Won't it be hard?"
- "Will it really be good for him?"
- "What if he has a seizure?"
- And many more.
Sometimes well-intending people who are part of the service systems perceive that people with disabilities can't "do seven days" because of heat, food preparation, adult assistant needs, or getting into tents. Those issues appear insurmountable to them.
Now in case anyone is whispering, "They're an exceptional family," I want you to know that we are just an average family that happened to have the rafting skills to do this trip! The river trip is parallel to many other situations in our lives and is a metaphor for Wilson being a part of whatever action is going on, whether it's being a counselor in-training at summer camp, adapting a bike so he can ride with his classmates, or volunteering at the soup kitchen to assist people who don't have a place to live or food to eat. Those are the action spots where Wilson wants to be with his friends and family. These places and activities should become the "programs" in the system, not other separate or special places. We don't want special programs or special models or more systems or special trips. Instead, we want Wilson to be offered access and support for things he needs in natural daily environments.
Navigating the river was much easier for us (at times) than navigating the school system; a system that asked why kids like our son should be in general education all day. They'd ask, "Don't you understand that he has intensive needs, that his needs are too great to be served in his neighborhood school with no other kids with disabilities, that the specialists aren't in every building in the district? Don't you understand that the school can't really do this or that? Don't you understand that because he has a disability, he probably should be going out for special community-based instruction?" Wilson wanted to be in the classroom with academics, rich curriculum, school rituals, AND friends from his neighborhood.
Well, it's just like pureeing dinner on the river. Wilson needs to be where the action is, and we can offer supports there. People with disabilities don't need special spray bottles to keep them cool; they need squirt guns, action, fun, cousins, and friends. Kids with disabilities can sleep on the lumpy sand in a tent, even if their cousins dragging them through the door gives them a bumpy ride. Wilson deserved to experience the challenge, stress, and joy of the river trip just like the rest of us. Surprisingly -- or maybe not -- every person except Wilson became frustrated and lost their cool at least once on the trip. But Wilson, in spite of the intense heat, having to be strapped into one position for long periods of time, being scraped and chaffed from his life jacket, not being able to get those bugs away from his mouth, didn't lose his emotional composure. Wilson deserved this opportunity to ride through the rapids, feel the rush of the icy water in his face, and celebrate river triumphs with his brother, sister, and cousins.
How does all of this relate to you, to your lives? My wish then and now is for all of us to work together to build a country where the river trips of life can happen easily and people don't ask questions like "WHY?". I suggest that we instead change the question to: "HOW can we make it work?". The system of support and services that we create must come to the individual and offer choices, resources, suggestions, and opportunities so that everybody can have rich lives filled with as much adventure as they choose. No one should tell our family, or any other family, or any person with a disability that they can't do something because of their disability!
I ask you to take risks, ride the river, and create opportunities for children and adults with disabilities as well as their families.