Former Perkins teacher wins Genius Grant

Alex Truesdell is honored for her work in adaptive design, which helps children with disabilities live more fulfilling lives

A woman demonstrating some designs to a group

Alex Truesdell (second from left) with her team at the Adaptive Design Association, which builds affordable custom devices for children with disabilities. Photo Credit: John D. & Catherine T. MacArthur Foundation.

November 17, 2015

For the last three decades, Alex Truesdell has changed the lives of thousands of children using corrugated cardboard and glue. Now, with the help of a prestigious MacArthur Fellowship, she can make that number grow.

A former teacher and founder of the Assistive Device Center at Perkins School for the Blind, Truesdell has made a career out of building simple, low-technology devices for children and adults with disabilities.

The Center constructs a variety of items, including chairs, desks, booster seats, book holders, sensory play tools and more. Devices are custom-designed to meet a child’s specific needs, and are built by volunteers using heavy-duty cardboard, which is lightweight, inexpensive and durable.

In 1998, Truesdell founded the Adaptive Design Association (ADA) in New York, where she and her team continue that mission.

“Our purpose is to make the items that make a big difference in a kid’s life,” she said. “If (a child is) playing with siblings on the floor, we would make an adaptation so they can sit more comfortably on the floor and not topple over. If they were in music class we would figure out (a device) to hold the instrument in a way they could use it and not be left out.”

Thanks to the MacArthur Foundation, Truesdell will have an extra $625,000 over the next five years to help more children. She was one of 24 individuals this fall to win a coveted “Genius Grant,” awarded annually to those who “show exceptional merit and promise for continued and enhanced creative work.”

“When I got the call from MacArthur it was the most shattering, stunning, memorable moment,” Truesdell said. “In one instant, life changed. It was like, ‘We made it!’”

When she heard the news, Truesdell was preparing for a trip to Peru, where she helped build an adaptive design center at a school for children with deafblindness in Lima. Part of the ADA mission is to expand the number of adaptive device centers around the world by sharing knowledge and resources in hopes that more communities will launch their own programs. 

“Anything we do (at ADA) we want to make sure can happen globally,” Truesdell said. “It’s so important that we open source and share what we do. We want to share curriculum, we want to share a pattern, a technique as broadly and widely as we possibly can.”

Truesdell became a pioneer of the assistive device movement while a teacher at Perkins in the 1980s. She was inspired by one of her students, an infant with multiple, severe disabilities, as well as her aunt, who suffered a spinal cord injury that paralyzed her hands. Watching them struggle to perform simple tasks, Truesdell remembers feeling an overwhelming urge to “fix things.”

With help from a relative, she built dozens of low-cost gadgets and adaptations and later pushed for funding to open an assistive device workshop at Perkins. Her legacy lives on in the Perkins Assistive Device Center, which serves students with disabilities at Perkins and in the community.

“She’s a person with a lot of vision and a lot of drive and determination to make things happen,” said Molly Campbell, the Center’s current director. “The concept is actually rather simple – that schools should have an area set aside where people can come together to build low-technology, affordable, functional creative materials that will help kids better access their education or participate in life. She did it with a lot of style and a lot of energy.”