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After graduating high school, I took a summer job as a knife salesperson to earn some extra money for college. I sold high end kitchen cutlery with handles specifically designed to be perfectly ergonomic for every size of hand. I had a growing contingent of happy customers until one day I made my sales pitch to a very kind woman who smiled and thanked me, but said that the knives didn’t work for her hand and that if I had knives with very thin handles, the kinds she can safely grasp, she’d buy them immediately.
I admit that teenage me just shrugged off this incident and moved on to the next potential customer. But here is a little known fact I wish I’d known back then: nearly a fifth of the US population lives with some kind of disability. That means that almost one in five people cannot easily use all of the things designed to make our everyday lives easier: knife handles, chairs, hair clips, door knobs, light switches, and so much more. If you read my piece about TOM and the maker movement last month, you’ll recall that our current mass-manufacturing system provides no incentive for companies to develop items that are needed by a few thousand people, not even by a few hundreds of thousands of people. So what do we do when a fifth of the population lives in an environment not designed for them?
“We build for one, engage everyone, and change everything,” says Alex Truesdell, one of last year’s MacArthur Genius Award fellows, and the executive director and founder of Adaptive Design Association, Inc (ADA). She focuses on building assistive equipment for children with disabilities that is specifically designed for each child’s unique needs. But more than that, her philosophy is that “everyone who cares about the child has a hand in creating” the equipment. So in a process that is the opposite of mass-production, often an entire team of parents, therapists, engineers, doctors, and teachers comes together with ADA to solve one access barrier for one child. “We believe every part of the kid belongs. People will say, ‘but he’s here’, but that’s not enough,” Truesdell says. She then tells me the story of a little boy with whom she worked a couple of weekends ago whose assistive equipment was too bulky to allow him to be near enough the play table in order to play with the other children. “People need to contribute. We’ve gotta stop segregating and discriminating,” Truesdell says.
And this is precisely the message that she feels the MacArthur Foundation awarded. “I feel we all who care about this topic got the MacArthur. Not just me, but the topic got the award.” But long before the attention that comes with such a prize, the ADA did its work slowly and steadily by word of mouth. It was imperative to spread stories in order to build the kind of community needed to create such collaborative designs to suit the children in that community. Truesdell emphasized that it’s relationships they build as much as, if not even more than, assistive equipment. After all, for children who live in an environment that wasn’t designed with their bodies in mind, it’s absolutely necessary to have a support network of people who understand their needs and value their abilities.
ADA often uses corrugated cardboard to create custom devices for two reasons: 1) it is available all over the world, and 2) it is incredibly sturdy, able to hold up to 1000 pounds. It’s a wonderfully versatile material that is easy and quick to manipulate—the little boy who couldn’t get near the play table had new cardboard assistive equipment by the end of that one weekend—and Truesdell notes that “it’s not often celebrated as it should be, as people with disabilities are not celebrated as they should be.” When I ask Truesdell how long items made of it last, she says with a laugh that they made a sofa in their New York shop ten years ago.
So now that the Adaptive Design Association has built for one several thousand times and engaged everyone around children in New York City, they have a new challenge when it comes to changing everything going forward. “In the coming years we need to find effective ways to share everything we do,” Truesdell says. “How can there be many, many groups mightily skilled, diverse and inclusive, making user-inspired items.” After all, the key challenge and the key beauty of the issue Truesdell is tackling is that there is no one-size-fits-all option. Communities have to cultivate the skills and relationships that will allow them to meet the needs of all the children among them. So far seven high schools in New York City have adaptive design workshops. “The majority of students with disabilities graduate without a job prospect…” says Truesdell. “As tax payers,
we can say that’s outrageous. With shop classes though, that’s a career track. They can work in collaboration with others. As can retired people and US veterans. We have a program for women who’ve been in the criminal justice system.” Truesdell asks me to consider the 38 million people with documented, severe disabilities and the fact that each of them needs several custom adaptations. “That’s huge training and job creation,” she says. “There should be urgent planning for what to do and how to upload, disseminate and share” techniques, solutions and designs.
One thing becomes very clear listening to Truesdell’s journey and her work: this work is not about helping one group of children. This work is about helping whole communities one by one, and ultimately changing the world locally across the globe.