Alex Truesdell: Maker. Adaptive designer. Advocate for children with special needs.

Alex Truesdell has a vision for the maker movement. TechRepublic talks to her about adaptive design, why the maker movement is critical for special needs children, and banning the word 'disabled.'

Image: John D. & Catherine T. MacArthur Foundation

Alex Truesdell was just seven years old when she began seeing firsthand what it looked like to have special needs. Her younger sister Mary Ann couldn't sit still, kept getting in trouble. "She could learn anything," said Truesdell, "but not just by paying close attention while she was seated. I learned early on to be nice to learners, to make learning interesting for them."

The early experience sparked a lifelong interest in special ed. Truesdell, MacArthur Fellow and founder of a nonprofit company called the Adaptive Design Association (ADA), has devoted her life to making lives better for people with unique needs.

"Much of what ADA does is find kids who are in special ed where it has nothing to do with a cognitive problem. Special ed is full of people with no cognitive problem at all," Truesdell said. "They're experientially deprived, but it's because the system was stupid. That's how I felt when I was seven. Teaching Mary Ann numbers seated at a table made no sense."

Mary Ann was born in '62, and labeled hyperactive at age two. In kindergarten, she was expelled for being bouncy and "for not wanting to leave the gerbils alone. For crying when she came in from the playground," said Truesdell. "She was distraught about sitting and not running around."

But, back then, options for special needs students were limited. "To sit and be tested was the standard of how you'd prove you were obedient. But it also meant that we destroyed kids' spirit and cognitive capacity."

Truesdell made it her mission to help children like her sister who needed extra support. She began her work in education in high school, when she worked in a daycare with a "specialty in naughty kids." After college, she took an internship to work with infants at Perkins School for the Blind.

And then, everything came to a halt. Truesdell's aunt, Lynn, was having a medical exam when she suffered a seizure--it led to a spinal cord injury, which paralyzed her hands. It changed, forever, the way she moved around in the world.

Her aunt couldn't make a fist, or hold a pen or fork. "She was devastated, livid," said Truesdell. "She wanted to be dead."

Truesdell, then 25, worked with her aunt and uncle to figure out solutions.

It was the early '80s, and, according to Truesdell, "the tail end of the early human world of making. At that point, fast food wasn't quite as fast as it became, catalogues weren't quite as available. We weren't quite as consumer-driven." Her family, she said, still had sewing machines and knew how to make soup from scratch, pies from scratch. Truesdell learned from her grandparents, who were makers--they did everything themselves, from cooking to carpentry to gardening. "They wouldn't throw something away," she said, "they'd sew it or repair it."

She used what she'd learned from her family to tackle the problems together. "Whether it was doing the laundry or cooking or self-care, she would be able to look at all the problems," said Truesdell. "How would she open packaging? How would she open the mail? How would she water plants? How would she dress? Everything was an issue."

They came up with solutions for opening dresser drawers, kitchen cabinets, for using the typewriter. "What would be the way that she could continue to live, essentially with two flippers at the end of her wrists as opposed to two normal hands?"

The issue of the dresser drawer was particularly difficult. "How would she open a dresser drawer if she couldn't put her fingers around the knob?" said Truesdell. "I was losing sleep to solve that problem."

But the trio eventually figured it out--they bought small collars at the pet store and hooked them around the handles so that Lynn could stick her hands through and pull with her wrists.

Even that kind of basic solution, said Truesdell, has been working now for 34 years.

It was this kind of adaptation that caused Truesdell to realize how important the maker movement can be for people with special needs. She started a nonprofit, Adaptive Design Association, based out of New York City, in an effort to come up with ways to bring life-changing adaptive equipment to children with special needs.

So what is adaptive design? It's about making the environment fit the person, rather than the person fitting to the environment. For example, Truesdell said, "my aunt didn't want a robotic arm. She wanted to be able to make an omelette with a modified spatula."

"But we rarely think about custom fit," she said. "It's a standard world." Look at standard chairs, for example. "If you're uncomfortable in your chair, it would be easy to say, something's wrong with you. Well, maybe your chair stinks. And the table height isn't right for you."

And while she works with children who have special needs and can greatly benefit from custom-fit furniture, it's critical, said Truesdell, to get away from the narrative around 'disabilities.' "Disability is like saying 'all tall people play basketball.' It's an ignorant remark," she said. Instead, Truesdell prefers 'unique needs.' Whether it's a vision thing or a mobility thing, or a not-sitting thing, the word disability sounds like a marginalized group. It should be banned."

With a MacArthur Foundation grant, Alex will continue her work sharing and spreading techniques around the world so that every child can get the equipment he or she needs to engage fully with the world around them. She has inspired and guided the creation of adaptive design centers in Nicaragua, Holland, Brazil, Montreal, San Diego, and other locations around the world.

"Humans have variability, that's everybody," said Truesdell. "But how are we different? That would be a far healthier conversation."

In her own words...

Do you have any advice for the younger Alex?

Strive to become fluent in a second language (Spanish or French) and make the most of piano and violin lessons. Practice even when time pressures make it seem impossible!

What's the best thing you've read lately?

A Path Appears by Nicholas Kristof and Sheryl WuDunn, and Healing the Heart of Democracy by Parker Palmer. Both books affirm the potential for widespread social change and the imperative of mobilizing individual and community engagement to make those changes happen now.

Are there any other professions you would love to try?

I would love to be a preschool, kindergarten, or first grade teacher. Also a botanist specializing in old growth forests.

Also see