Liz Jackson is the founder and chief advocacy officer of The Disabled List, a disability self-advocacy organization creating pathways for disabled people in design. Ahead of the inaugural World Interaction Design Day (IxDD) on September 25 — which this year highlights the theme of advancing diversity and inclusion in design — Adobe’s head of inclusive design, Matt May, sat down with Liz to learn about her new fellowship, WITH, and discuss how interaction designers can evolve their approach to inclusivity.
Liz, can you tell us your story & how you got to where you are today?
On March 30, 2012, I woke up, fell out of my bed, and landed in the hospital. When I left, I needed eyeglasses and a cane. That’s when it struck me: as a disabled consumer, why do I have so much choice when it comes to my eyeglasses, but not my cane?
At first, I wanted to make products. I thought, there’s a lack of choice when it comes to canes, so I’m going to make more canes. But this isn’t a simple problem with a simple solution — it’s a complex lack of infrastructure in the world.
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.
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 talked about how design thinking and empathy aren’t 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.
Empathy allows designers to assume that they have a certain level of expertise about our situation, and it’s a false presumption. They lack the true, gut knowledge that a disabled person has. Sometimes I wonder: has there ever been a design for disability that doesn’t aim to fix us or fix things for us, but simply to help us express ourselves? Why is there a constant pressure for us to improve?
What’s your advice for technology companies who are interested in bringing disabled design talent to their organization?
The first thing they should do is ask themselves: why are you doing this, and who is it aimed at? If you’re hiring disabled people because it feels good, you’re doing it for everybody else. If you’re doing it because you see the value in disabled people and understand the creativity and ingenuity they bring to the table as designers, you’re doing it for us.
Second, you need to start small and build the infrastructure. Hire one person, create a need, and grow it over time. The WITH fellowship is limited in that it’s three months long, and only for three days a week (and we don’t determine the length of the day). Both sides can decide at the end: was this useful? Should we do it again, or commit long-term to this person or role? I’m really excited to see what happens with these first few cohorts of WITH.
How can companies escape the trap of relying on disabled people only for user testing? How can they ensure they’re providing talent with opportunities to contribute at a higher level?
Companies need to shift their mindset and realize that the greatest thing they ever made might not have been created yet.
With the WITH fellowship, one of the most essential elements is downtime — time where the designers aren’t doing anything. For me personally, excess time forces me to build relationships with people that I might not have taken the time to interact with had I been busy. Allowing for downtime on the job leaves space for the unknown to take place, and allows someone to see the possibilities. That’s one step companies can take to fostering disabled creative talent far beyond user testing.