Liz Jackson Doesn't Want "Design for Disability"—She Wants Disabled People to Be Part of Designing Better Products

This interview is part of a series featuring the presenters participating in this year’s Core77 Conference, “The Third Wave”, a one-day event that will explore the future of the design industry and the role designers will play in it.

Liz Jackson perceives the world differently than many other designers. This outlook is in one part thanks to Jackson’s seemingly innate tendency to push back on outdated norms, in another part due to the ingenuity forced out of her after she woke up one day to find she was living with a neuromuscular condition. In fact, Jackson regularly gives credit to disabled people throughout history as “the original lifehackers“. With this knowledge, it would make sense that the disabled community must mesh quite seamlessly with the design world… right? Well, Jackson and many other disability activists say, not quite. Jackson formed her organization The Disabled List to rectify this, not only to get more disabled voices in on the design conversation, but also to illuminate what the design community lacks without their input. At the Disabled List, Jackson and her team work to partner design studios with disabled designers who can help steer any project in the right direction and ensure disabled ingenuity is comprehensively applied to a design from the get-go.

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We recently sat down with Jackson to learn more about how she entered the world of design and how she wants to spread the wisdom of the disabled community to improve the practice of design overall.

Core77: In your AIGA talk, you said you started your career in TV production. I was first off curious how you decided to go down that path and then what led you to going into design?

Liz: I grew up in Ohio. I watched a lot of TV, and I knew that Matt Lauer and [Yeardley Smith], the voice of Lisa Simpson, went to Ohio University, so I was like, “I’m going to go there.” I studied TV production and I was no different than I am now. I almost failed out multiple times, but I remember this is sort of the embodiment of my entire college career. There was always this way in which I was pushing back. Before I graduated, I got an internship at the Ellen DeGeneres show. At the time, it was a brand new show.

So, I went and it was just an exciting place to work. It was early on at the show, so it was a deeply moving time for everybody who was involved because, Telepictures and everybody involved with Telepictures didn’t know if audiences were going to accept Ellen; it was still at that point. So, when ratings would come in, everybody was just so blown away and couldn’t believe it. There were oftentimes tears of joy [for] that newfound success. So, I was there early on and then I came back.

Four days after I graduated, I just decided I wanted to keep doing it. I moved back out to LA and eventually got a job there. I was there for a handful of seasons. Then I met my ex, followed her out to New York. Decided while working at Ellen that, daytime talk was going be my thing. So, I was like, “Okay, well I’m gonna do more of that.” And for all the reasons that I succeeded at Ellen, I just totally failed at Martha [Stewart]. It was just awful and dramatic. And so, I decided I didn’t want to work in TV anymore.

So I took a job at a startup called Airbnb. I think I might’ve been one of the first 50 employees, it was super early on. And then, I woke up sick one day and was pushed out onto disability and that’s how this all started.

So how did that lead you to thinking about design?

When I got out of the hospital I needed eyeglasses and a cane. And for me the question was, why do I have so much choice with my eyeglasses when I don’t with my cane? When I actually got home [from the hospital] and googled canes, I saw that there was no choice. I lost my shit. It was painful, and that was my first realization that, oftentimes disability means an inability to choose your own identity. Your identity is sort of chosen for you.

Then suddenly in my email one day, these canes showed up. There was a purple one, an orange one and a turquoise one. I just looked at the color purple, and I was just like, “That’s it.” I thought there was something sort of neutral about it. So, I got my cane, and a whole series of things happened. One was that I got on the subway one day and I went to sit down. I saw this woman looking me up and down. At that point, I thought she was going to ask me what was wrong, but instead she asked me where I got my cane.

“Oftentimes disability means an inability to choose your own identity. Your identity is sort of chosen for you.”

So I had my new purple cane, and I had gone into the J.Crew in Columbus Circle. In there was just this table of eyeglasses. That was the first time it really struck me—why doesn’t J.Crew have a cane? It was especially striking to me because I realized, glasses are a two part process. You either wear the glasses without a prescription or you have to buy them at J.Crew and take them to your optometrist. It’s a total pain in the ass. Why are they the thing?

So I hauled ass home and wrote J.Crew customer service. I was like, “Will you sell a cane?” They wrote back and said, “No.” And then, that weekend I was watching The Girl with the Dragon Tattoo movies. That was when I realized I wanted a badass superhero alter ego. So, I created a blog called The Girl with the Purple Cane. And what I used it for initially was to harass J.Crew. I created this campaign called, “Yes J.Crew Cane”. Through this process I had begun to start to build out an argument, find my way into the disability community and really start to learn about disability.

I later happened to meet this other person [when I attended the Nantucket Project], his name is [former RISD interim provost] Pradeep Sharma, and this was the moment that design [came into focus] for me. He was on stage making a series of assumptions. I start writing down everything that I think he got wrong. I was like, “you can’t assume this. You can’t assume this,” right?

So, I chased him down afterwards and I said, “You’re wrong.” He was like, “Tell me.” I literally pulled a notebook and told him. He was like, “You’re right. What do you know about design?” and I said, “Nothing.” So he’s like, “Why don’t you start coming up? Stay with me and my family on weekends and we’ll start to kinda cobble together some design education.”

Tell me about your organization The Disabled List and the Critical Axis project.

The Disabled List is a disability-led design organization. We engage in disability as a creative practice. So, usually in design when people consider disability, typically the goal is to smooth things out or to fix a thing. But for me, it’s really about honoring the friction of disability. Really thinking about what sort of creative opportunity disability has to bring to design. And really about actually incorporating design into disability.

And Critical Axis is a project where we’re actively putting a critical lens on what’s lacking in design, marketing, branding and all these creative fields. So, what happens in [these fields] is if there’s any sort of disability material, whether it’s a product or campaign, it usually feels pretty good and people get caught up in their good feelings and it gets pushed through and it wins awards. It makes the paper.

Disability tropes as charted on Critical Axis

And what I wanted to do was take the tropes that we had studied within disability studies and the awards that these ads are being given, smash them together and see what happens. And, it’s just been horrifying. There are these things that I didn’t expect to bump into. One of the big ones is where companies will announce something, get the PR boost, and either the thing never happens or it stays up for a few months and then it just goes away. I didn’t realize how much this happens.

“Usually in design when people consider disability, typically the goal is to smooth things out or to fix a thing. But for me, it’s really about honoring the friction of disability. Really thinking about what sort of creative opportunity disability has to bring to design.”

It’s an overwhelming amount of examples. And again, I think it’s because when people endeavor in this space, they get caught up in their good intentions and they don’t realize the amount of work it takes. That there’s maintenance. I think that’s the thing that’s lacking, is maintenance.

So it’s about not only helping people be aware of these tropes and calling them out, but also keeping people accountable for what they’ve said they were going to do.

Yes. But the thing that I really struggle with is, this work is just so incredibly painful. It’s horrible because, what do I have? I have smiling faces approaching me telling me about this good thing they did, and then I burst their bubble, right? Every time. So, I think there is this element with Critical Axis where I hope that because it exists out in the world, if people will just use it as a resource, maybe I won’t have to do the work and it is able to do the work for me and my peers. 

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I imagine there are tons of disabled designers out there, but for whatever reason there’s low visibility around the work that they’re doing. Why is that?

So, when I started the WITH fellowship, somebody at SCAD reached out to me. And they said, “Do you want our disability numbers?” I was like, “Sure.” These numbers come from one specific place, which is that these are not students who identify as disabled, these are students that requested accommodations. So, these numbers don’t fully encompass the actual population of students that are disabled, but it’s already a high number. There is something I know, which is this: on average, any college population is about 11% disabled.

So, I’m actually in the process of talking to all the different New York design schools, because I think that these numbers across the board might be this high everywhere. I wrote this piece in the Times about it—disabled people were the original life hackers, we spend our lives cultivating intuitive creativity because we’re forced to navigate a world that’s not built for our bodies, right? I think that creativity continuity that we spend our lives building, it leads us to enter design fields.

You have to think about it this way though—say you know that disabled people are entering creative fields at education at a much higher rate. And then, just imagine to yourself what happens year after year. How these students probably graduate or drop out because they’re not getting their needs met. And then, imagine what happens post graduation. When’s the last time you worked with a disabled person? When’s the last time you saw a disabled person in design? Where are these people? They disappear after graduation. I don’t know the amount that’s graduated, this is literally all I have to go on so far. But this is what I struggle with.

There was a woman I talked to yesterday where she’s creating this course about designing for disability. I’m like, “Why are you designing for disability when 20, 30, 40% of your students are probably disabled?” So, there’s the disabled student who clearly is not doing so hot, even though they’re entering these fields at exponentially high rates. And then on the other side of this, you have the design student who has taken an interest in disability but doesn’t have any resources or critical cultivated knowledge to pull from.

I realized if you start to incorporate disability studies curriculum into design school, what happens is you create a way for both of these students to engage in this space, but also in the process find each other. I fundamentally believe if you get these students working together in college, when they graduate, they’re going to start their professional career actually seeing disabled people as their peers rather than recipients.

When you’re talking about disabled studies, in your opinion what is the right way of implementing this in design programs?

I could list off the people that I think are top tier disability studies practitioners in design right now—you have Ashley Shew at Virginia Tech. You have Aimi Hamraie at Vanderbilt. You have Bess Williamson Stiles at SAIC. Elizabeth Guffey at SUNY Purchase. You have these people who are doing the work and honestly, what I really want is for design schools to work collaboratively with these people who have already been doing it. And start to realize that the expertise and the know-how already exists, it’s just about applying it and making it accessible to whatever design school it is that you’re working in.

And the interest is there. I was approached by one New York City school, to teach a course on it, on Disability Studies and Design in the fall. I’m actually talking fairly comprehensively with another design school here in New York, about building a Disability Studies Minor.

When these design schools are looking to do this, a question I encounter a lot is, who is the right disabled person to work with? For me what it comes down to is, is this person a disability studies practitioner? Have they actually worked with the literature? If a person can articulate that, then I think that is a person I would trust.

Do you think the designer’s “problem solving” mentality can contribute to misguided solutions and the fact that disabled people are not included in the discussion?

I think for us at Disabled List, we actually think the problem is the defining of the problem. The actual problem-solution scenario is literally the problem, right? It’s like the problem becomes the problem.

“I think that some of what we’re teaching these younger designers is outdated. I think we need to kind of look for new models, ones that actually amplify people who are traditionally perceived as recipients. I think young designers are really looking for that.”

So, for us, in terms of our disability led design methodology, what Alex [Haagaard, Director of Communications at The Disabled List] has really come up with, is instead of defining a problem, how do you articulate a desire? And, how do you work from a framework of instead of defending the problem, what if the process is the problem and then just kind of going from there?

This happens so often with design students is where I’ll go on a stage and I’ll rambunctiously talk about my perspective. And, I didn’t realize early on that, in my doing that, I’m actually providing them with a sense of relief. Because I think, especially millennials as they start to enter design professions, they don’t feel good in the role of “savior”. It doesn’t feel authentic to them. They are very conscious of all of the ways in which that can increase biases and create new stigmas.

So, I do think that some of what we’re teaching these younger designers is outdated. I think we need to look for new models, ones that actually amplify people who are traditionally perceived as recipients. I think young designers are really looking for that. There’s just, nothing has been created in that area yet.

From your experience, what is the secret sauce to getting to people to let their guard down and actually listen? Because, that’s a hard thing, especially now, to get people to do.

Humor. I’ve also found, if I can acknowledge my mistakes … I could look back at the things that I was thinking early on, I presume they’re not different than what any designer right now would be thinking, right? It’s sort of that working through the process. I told a story [in my AIGA talk] about, I encountered these flowers in a trash can, I thought they were thrown away, but it was actually public art.

So, I think there is this way in which, if I can be self-deprecating about it, then I think it makes it easier for designers to take themselves a little less seriously. I think that within that scope of being neutral and being empathetic, I think we’re also talking about being serious. So, just finding humor in it, I think is probably the easiest thing.

What would your advice be to anyone who wants to take an idea and not just turn it into an academic fascination, but actually into action?

I’m going to reframe it a little bit—when a designer decides that they’re going to work with a disabled person or they’re going to design for a disabled person, they come in and the only interaction they have with the disabled person is simply around the solution the designer wants to create. What if instead you just began to find your way into a community and really start to understand the community without any sort of preconceived notions of what could be created, how you could benefit? But really, just simply out of a desire to understand.

So, I think for me, even before we can frame a different future, I think we need to understand the people who would be a part of it. And then, go from there.

Okay, my last question was, what can design publications like ours do better?

Say you’re a writer that doesn’t have a budget or isn’t making a lot of income right now. I would say, make friends with a disabled person that you can turn to, to ask just simple questions to. And, offer writers support in return and advocate internally whenever you can. If you’re a company, I would have a disabled editor on call at all times. I wish that every publication had a disabled editor. I understand it’s a tough thing to do given the state of media right now, there’s just no money anywhere. But, just building those relationships and having that person on call. We know before we even read the article, we know from the picture, we know from the headline, we know from the first read. And, when I say we know, I think anybody else at whatever publication it is, couldn’t even begin to consider the scope of all that we know.

And, I think this is the other thing too is, is writers really enjoy it. I think it’d be great if a publication supported relationships between disabled editors and writers, or hired disabled writers. Because we’re fascinating to work with. We upend assumptions, we are really creative with language. And, I don’t really ever think you’re ever going to get the thing that’s expected, so it keeps it fresh.

This interview has been edited and condensed for clarity.

Hear Liz Jackson and other design industry leaders speak at this years Core77 Conference, “The Third Wave”! Tickets are available now.

Source: core77

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