Disabled people are rarely considered experts on disability. We’re rarely asked by brands to collaborate on product design or development for products that are targeting consumers who identify as disabled — even though we have spent our lives cultivating an intuitive creativity by navigating a world that isn’t built for our bodies.
We require a new baseline that presumes we, disabled people, are beings of value and recognizes the innovative value of our skill sets. Now, I’m focused on building that infrastructure.
Speaking of that new infrastructure, tell us about The Disabled List and WITH, the new fellowship you created.
I’ve heard companies say, “We don’t know how to find disabled designers.” So I started The Disabled List, originally as a list of creative disabled people available to consult. I wanted to shed light on the expertise of my friends, but I also wanted to create value.
The response was really positive, so I realized I needed to take it further and actually facilitate the process of bringing disabled designers into organizations. That’s why I founded WITH.
WITH is a program that places creative disabled talent into top design studios in New York City for three-month fellowships, and our goal is to create new pathways into design for disabled people. In 2019, we’re expanding to San Francisco.
There are many reasons why disabled people aren’t entering design fields, but one of the biggest reasons is the narrative that exists today. I wanted to create a program that partnered disabled designers with top design companies in a way that makes disability attractive to someone.
I can give you an example: one designer I found was adamant that she was not disabled, and she didn’t identify as such. But when I told her there was a job opportunity for her because she was disabled, she quickly switched gears. Suddenly, being disabled was something she wanted to identify as because it was an asset.
We’ve talked before about narrative and how you identify as a disabled person vs. a person with disabilities — can you talk about why the distinction is important, and what the takeaway is for designers?
I didn’t identify as disabled or fully grasp the experience I was having until I realized I could no longer choose my identity. The lack of choice available to disabled people took that option away from me. By adopting identity-first language, I’m creating value for myself as a disabled person and joining a larger community that puts disability first.
There’s a medical model of disability and a social model. The medical model links a disability diagnosis to an individual’s physical body. On the other hand, the social model says we’re disabled not by our bodies, but by the world around us — it puts the pressure on designers and product manufacturers to create things that are accessible.
We can’t change our bodies, but disabled people can change the world. And to do that, we need to be included in the design process instead of positioned only as the recipients of inclusive design.
You’ve previously talked about how design thinking and empathy aren’t always the most effective tools when designing for disabled people, and you touched on this in your talk at 99U last year. Can you tell us more about that?
For me, what it comes down to is that we’ve historically failed to credit disabled people for their contributions. Instead of being co-creators, they’re considered “inspiration” for products that they actually had the conceptual ideas for. I talked about many of these stories in a piece I wrote for The New York Times called “We Are the Original Lifehackers.”
This is why empathy can be fairly oppressive for disabled consumers. As they practice empathy, designers glean our “life hacks,” ingenuity, and ideas, and rebrand them as “do good” and charitable efforts to help us. In “defining the problem,” a critical step in design thinking, our disability is often defined as the problem. And then, we’re not always included in the processes of iteration, prototyping, and testing.