Every project we do here at ADA begins with a fitting. Each time, we take the same tools and measurement sheets and usually, we have an idea of what we may come up with. That is where the routine ends. I often say that there is no such thing as a “typical fitting”- not because things go wrong or they’re hard to plan for or anything of that sort. The reason why is simple- no two people are the same. This may seem like an obvious statement and I think most would agree with that ideology- but all too frequently, children’s abilities are dictated for them. Just because they have a particular “disability”, lots of people assume that they must fit that textbook mold of a child with that diagnosis.
Fortunately, there are also many individuals out there who understand that those “limitations” are not set in stone. We always feel very fortunate to work with these types of individuals because although we all come from different walks of life, we have one common objective in mind- improving a child’s life in any way possible. It’s this unifying goal that makes the collaborative process work so well when creating an adaptation. While we have been fortunate to experience many very successful collaborative efforts, one in particular has really stood out simply because it proved that it doesn’t take a trip to ADA to realize everything stated above. What we do here can (and should) happen anywhere and everywhere- it just takes the right people to come together.
At the beginning of June, I was told that we would be going to Chicago for a few days to meet with folks from a couple of other organizations and we would also be spending a day at the Museum of Science and Industry teaching a workshop on cardboard carpentry. This seemed like a great opportunity as it was but we later found out we would also have the chance to visit a couple of schools to meet with therapists, teachers and their students to work on a project together. This was especially exciting as these types of “accelerated” building projects require everyone involved to immediately begin working together. There is no acclimation period or time to get to know each other before starting. This may seem unsettling to some but as stated before, if everyone is focused on the common goal of helping the child with that specific project, it’s really amazing to see how well complete strangers can work together effectively. The group we met in Chicago exemplified this dynamic beautifully.
One of our first stops on the trip was to the Courtenay School where we met with Sam Koentopp from Kitchen Communities and Kerry Martin, one of the teachers involved in that program at the school. We had a chance to meet several of the students and gardened with them, which was a really enjoyable way to kick off our trip. We then had the opportunity to sit down with the teachers/therapists, a couple other members of the Kitchen Communities team, and brainstorm about potential adaptation ideas to improve the kids’ experience in the garden.
At this point, we were introduced to a young man named Nate by his physical therapist, Emily. We discussed several adaptation options for him to use both at the gardens and in class. Nate was diagnosed with cerebral palsy and has trouble controlling his extremities but Emily showed us a very neat “trick” that helped Nate relax and gain a good amount of control over his movements. She simply picked him up, brought his knees up towards his chest, and all at once, you could see him just completely relax. This was our sort of “ah ha!” moment for the day as we realized that if we could just figure out a seat to support him in this position, he would be able to participate in various activities outside of his wheelchair. After talking with Nate for a bit and showing him some other adaptations we’ve made, he was in love with the idea of using something that would allow him to sit on his own. He has a particular passion for sports and we wanted to make the seat low enough that he could play catch or push a ball around with his friends. Luckily, we would be hosting a building workshop at the Museum of Science and Industry in just a couple days and we decided that if Nate could make it, we would try to make the seat we talked about a reality.
Fast forwarding to the day at the Museum, we arrived bright and early to set up in the “Fab Lab” with the staff there. We would have several groups coming through that day to learn the basics of cardboard carpentry while figuring out an adaptation to allow “Bailey” (a child-sized doll) to use a Ukulele while in a pre-made prone stander. While that was going on throughout the day, Myself and Tom Daniel, a Chicago set builder who took a course with us in NY (and graciously offered to drive us around), worked on designing (along with Nate, Emily, and the entire Courtenay group mentioned earlier) and building a seat for Nate who showed up with his entire family, eager to get started on the process.
Once we had all of our measurements and feedback from Nate, we began building. Nate provided some very valuable insight in regards to the measurements of his chair and how they would work best for him. For example, he said the sides should be a bit wide as to not restrict his arms from moving. Additionally, he asked if the seat padding could extend over the front edge a bit so that as he would reach, the edge wouldn’t be uncomfortable. Normally, the building process is collaborative to an extent in that one or two people may build, another will edge, and others will paint. This time however, it was that process accelerated and expanded. Tom and I were building for the most part but Nate’s entire family gave their feedback throughout and even got their hands on building for a while. We started by creating the side profiles of the seat. Originally, we had planned for the seat to sit directly on the ground but then Emily and Nate suggested that it could be a bit higher to give Nate some room to extend his arms but still low enough that he would be able to reach the floor comfortably. The back of the chair was angled forward in order to help keep Nate in the slightly-tucked position that helps his muscles stay relaxed. Along the way, Nate would constantly ask how it was going, what we were doing and how he could help.
It really was amazing seeing such a willingness to be involved from everyone participating but it was especially enjoyable having Nate there to work alongside us. Not only were we able to build something very meaningful on its own but we were able to connect with Nate and show him ways that he can participate whether it be holding hot glue sticks or buckles until we needed them or holding one end of a strap while we attached the other side. No matter what the task, it really made him happy to be participating and helping himself when many children just like him are always taught that they NEED the help of others. Nate’s attitude was completely the opposite and proof of how a sense of collaboration and partnership can really make someone feel included, just as much, if not more than the very adaptation you are building to promote inclusion.
At the end of the day, we had completed Nate’s new floor seat and he was ecstatic about it! He immediately wanted to try it out and once he was settled in, he stayed there until the very last minute when we had to leave as the museum was closing. The whole time he kept saying how cool it was and how glad he was to be out of his wheelchair and he began naming all the different activities he could use it for- like playing catch, using sidewalk chalk, playing board games with his friends and more. Seeing someone react so positively to an adaptation is just one of those things that will never get old but as I stood there looking at the scene around me, it was especially memorable. We had a room full of people from different states, of all different ages, occupations, levels of experience etc. who were complete strangers just two days prior- yet all of that didn’t matter. There was no hierarchy, no ego, no disconnect between everyone involved. We were able to come together with one common goal in mind- to help improve someone’s life.