Disabled people want disability design—not disability dongles

People with disabilities want to be participants in design, not recipients of design

Practical solutions are important

People with disabilities want to be involved in designing ways to improve their lives. (Radio-Canada)

Originally published on Nov. 8, 2019.

Full Episode Transcript

At first glance, a high-tech stair climbing wheelchair might seem like a cool innovation. But for Liz Jackson, it's another example of what she refers to as "disability dongle." Liz Jackson is a disability advocate, design strategist, and the founder of The Disabled List

She defines a disability dongle as an elegant and well-intended, but ultimately useless solution to a problem people with disabilities never knew they had.

Liz Jackson (Ryan Lash)

The creators of disability dongles, like a stair climbing wheelchair, "are held up on a pedestal of this good deed that they did," Jackson told Spark host Nora Young 

"But," she added, "if you actually talk to disabled people they would tell you that it scares them, that it's too expensive, that they can't afford it, that they simply don't want it. What they want is access. They want ramps. They want elevators." 

Disability dongles also speak to the larger problem of seeing people with disabilities as the recipients of design instead of participants in design.

"As designers are spending more and more time trying to come up with a specific fix, that's time and resources that are not allocated to actually innovating access," Jackson said. 

That innovation can come by ensuring that people with disabilities involved in the design process from the outset. "Disabled people were the original lifehackers," said Jackson, "We spend our lives cultivating an intuitive creativity because we're forced to navigate a world that's not built for our bodies." 

Inventiveness brought about by necessity can often be overlooked. Bess Williamson is the author of Accessible America: A History of Disability and Design. The book takes a comprehensive look at the history and evolution of accessible design. 

Williamson found people with disabilities have always needed to take a creative approach to accessibility. "To make headway into the inaccessible environments of postwar America, disabled people took a "'do-it-yourself' approach to physical access," Williamson wrote. 
Bess Williamson (Helen Maria Nugent)

"These disabled tinkerers and inventors are part of a long history of consumers who have reconfigured modern technologies for their own needs." 

One example Williamson came across in her research was a magazine for polio survivors called the Toomey J Gazette. First published in the late 1950s, the publication was a forum for people with disabilities to share their innovations. 

"So there's this kind of alternative consumer conversation that's happening, among disabled people, by disabled people, for disabled people," Williamson told Young. 

"I see it as a really excellent document of the kind of direct engagement with technology that many disabled people had, and continue to have," she added, even though they don't "tend to be credited as great inventors or great designers in history." 

Drawing from the direct experience of people with disabilities helps avoid the problem that Liz Jackson often encounters of designers seeing disability "as a project."   

Avoiding that approach needs to go beyond just bringing empathy to design. Amelia Abreu is a design researcher and the founder of UX Night School. She's seen a trend towards using simulation to build empathy in the design process, which bothers her.

For example, when considering accessibility, these simulations might involve having design working groups "try on" the constraints of someone with a disability, like trying out a wheelchair, to invoke empathy. 
Amelia Abreu

For Abreu these sorts of well-intended simulations feel like "stunts" that end up excluding the people who navigate the world with differing abilities.

"Empathy isn't like a six-pack of beer you can bring to a party. It's something that you experience on a spectrum," Abreu said, "When you're not bringing the full range of human experience into your design process, you're going to overlook a lot." 

Liz Jackson says one way to ensure that the perspective of people with disabilities is not overlooked would be to incorporate a disability studies curriculum in design schools. "What happens is, is you have a space for those two groups of students to actually meet, and actually meet each other's needs," said Jackson.       

"Disability studies is a field of study, it requires rigour, it requires a commitment, and there's really, really exciting and good and interesting work being done in this space."

Amelia Abreu agrees that design needs to work on including a broader cross section of people. "I think there's a lot of work that designers have to do in not only listening to other people, but bringing those folks to the table." 

Beyond just design, Bess Williamson believes part of changing that perception is about seeing accessibility as a civil right. 

"I think it truly takes both a social commitment to equality and a technological commitment to finding things that work really well in order to really fulfill this," said Williamson. "It takes the commitment of going beyond just what's beautiful, or just what functions really well, toward really thinking, 'can we take on the more challenging parts of this?'"

Jackson sees one of those challenges as recognizing that we need to honour what she calls the "friction" of disability. "The world was not built for our bodies, and so that in and of itself creates a friction. In design we are so focused on smoothing out and fixing a thing that we never stop to consider what disabled people want."