Alex Truesdell can tell stories of countless children who, given the right adaptive support, blossom beyond all expectations and “defy everything in their paperwork.”
“We classify kids too quickly. A lot of the problem is in the assumptions around disability, and kids learn it right away and we act on it right away,” she says. “The assumption of capacity can set the bar way up.”
Alex’s now-famous adaptations—whether they're a set of Spiderman-themed cardboard stairs that help a child access and sit in a school auditorium chair, or an adaptation to get from a wheelchair to the floor for classroom circle time—utilize common, affordable materials.
“Mostly our phone does not ring off the hook, and that’s a tragic thing,” Alex says, noting the great need for adaptations, and the “untold numbers of people who would love to make this stuff,” an undertaking she describes as an enjoyable and rewarding experience.
“The No. 1 thing that makes people happiest is doing something for other people,” she says. “Making things is very very healthy.”
The MacArthur Foundation recognized her work with one of the most prestigious honors in the United States, a fellowship that carries an unrestricted $625,000 award. She was among only 24 people nationwide selected for the 2015 fellowships, which are bestowed on people who demonstrate exceptional creativity and who show promise for future creative endeavors.
Alex Truesdell shows Austin Kellenberger the features of his custom-made chair, tray and easel.
“Wherever kids are, they need to have every possible opportunity,” she says. “Somehow our society continues to function at the expectation of much less [from children with disabilities], and as soon as that label exists, it’s hard to kick.”
Alex earned her bachelor’s degree in special education at Lesley in 1979 and taught during her senior year practicum at the Perkins School for the Blind. This placement led to a permanent position at Perkins, where she worked for 19 years and founded the school’s Assistive Device Center, which launched the innovative work for which she would eventually earn MacArthur acclaim.
At the Perkins School “I learned to treat them like kids first, and kids need to play,” she says, recalling simple things she created such as a tray rim so a child’s toys wouldn’t fall off. “I became consumed by the idea that we could do something. The babies needed adaptations; well, how do you make them?” That was the beginning of her "cardboard carpentry" work with infants and toddlers.
She returned to Lesley and earned a master’s degree in 1998 in curriculum and instruction with a specialization in conflict resolution and peaceable schools, and she won a small start-up grant to take the idea of what she was doing at Perkins and expand on it. She went on to found the Adaptive Design Association (ADA), which has helped thousands of teachers, therapists and parents create child-specific alterations to furniture, equipment and spaces that make them more useable, including inserts, trays, stairs and much more.
“We each need a more custom fit in an off-the-rack world,” she says.
Truesdell adds that her life has changed since the MacArthur honor. The Adaptive Design Association was featured on PBS NewsHour, after which she received 600 emails in three days.
“I hope that more and more people learn about this,” she says, as she works toward the goal of a future when all people with disabilities across the globe are fully educated, employed and valued. She says involving everyone in the solution creates jobs and experiences for “hands-on learning, collective problem solving and ingenuity.”
She calls on educators to question children’s diagnoses and education plans.
“Here’s the paperwork; respect who wrote it, [but] don’t believe every word of it,” she cautions. “Be careful to not swallow the doubt about that child’s expectations. I hope that Lesley teachers can be an example of that—that you want any of these children in your classrooms, and you expect them to be there.”