IDSA and the Society's Diversity, Equity, and Inclusion Council present the fifth installment in our Disability in Design interview series, below, with Deborah Lalush (she/her).
Deborah Lalush is a UX Researcher and Designer located in Raleigh, NC. Learn more about Deborah and her work at www.deblalush.com
"While my formal training has been in design, I am also disabled and passionate about disability rights, access, and inclusion. Therefore, my passion within design lies in giving voice to users who don’t fit the model of the typical abled consumer. Watch my TEDx talk from Feb 2020 on the importance of an inclusive design process on the TED site here, or above.
I found a love for UX in one of my final semesters of Industrial Design at NC State. My logical, puzzle-solving design skills thrive in a UX environment, and it allows me to dig into the depth and breadth of user research that I value so much."
Tell us about your education background.
I went to NC State University and majored in Industrial Design. I minored in Cognitive Science as well, which has been huge for my understanding of human factors. I graduated in 2020, right as the pandemic hit, having taken an extra year because of the not-so-great intersection of design studios and my physical health.
How did you become interested in design, particularly industrial design?
When I was in fourth grade, a professor from NCSU came in to speak to my class about ID. Sharon Joines told us about how her studio of students were working on products to help hotel housekeepers sustain fewer injuries and health problems from the cleaning they do, and little me took off sketching a rotating toilet brush on my worksheet. I declared for years that I wanted to be an inventor, since I’ve always liked solving problems, making things, logic puzzles, and mechanisms. I rediscovered the name for ID when I started thinking about college. Then Sharon, the same professor from my fourth grade class, wound up becoming my mentor, design mom (I’ve never called her that to her face, but it’s true), and advocate who helped get me through school.
How has disability impacted your life?
The easiest thing to tell you is that I’m in pain 24/7. I have both an autoimmune arthritis that attacks my joints and a hypermobility spectrum disorder that means my collagen is too weak and joints are too loose to a fault. It compounds to constant joint pain, which as you can imagine makes things difficult. And honestly, keeping up with all the medical stuff is like a full-time job. I take 12 different meds I have to keep refilled, there are specialist appointments on top of standard doctors’ appointments, and you can’t even imagine the time it feels like I waste on explaining myself to people, whether it’s coworkers, friends, or strangers who have decided that my mobility aid in public means they deserve to know my whole medical history. It’s exhausting, but it’s also brought me to an incredible community of creatives online that I wouldn’t have met otherwise.
The innovation and creativity that it takes to function as a disabled person in our society is crazy, and everyone I’ve met is an expert at living their particular disabled life. Online disability communities rock.
I’ve also had to learn to pace myself in a way I never did previously. I have ADHD as well, so it’s really easy for me to hyperfocus on something and put all my energy into it. But with joint pain and fatigue, like I have, that can burn me out for days if I’m not careful. I’ve had to learn to take breaks, take stock of how I’m doing physically and mentally, and take things a little slower sometimes, so that I don’t knock myself out of commission for days.
How has disability inspired and affected your pursuit of design?
The doctor who told me at 18 that nobody would ever know why I was in pain, and that a second opinion would be a waste of my time and money, made me mad, stubborn, and a fierce advocate for anyone without one. I can’t neglect the user because I know so constantly what it’s like to be neglected in that way, which has annoyed teams focused on MVP without full user consideration.
The decoration and customizations that I’ve done to my mobility aids and braces remind me constantly of the lack of beauty and dignity in design for disability. The rigidity of design school studios, the lack of flexibility and access in their practice and curriculum, and the harsh mindsets and hazing of the 'expected suffering' of design school forced me out of ID and into UX instead, though I don’t regret that change either.
What challenges have you faced through school and in your career? What resolutions have you found helpful in school and work environments, and what still needs to change?
Design school affected my ability to even do design, physically and mentally. Unforgiving, inaccessible studios left me in pain longer and pushing myself past my limits regularly. I neglected sleep, mental health, and physical pain signals to continue working on projects well past the point that I should. My sketching never properly improved because I was pushing myself to keep working past a point of severe shoulder and wrist pain nightly, since we were judged first on quantity, then quality. I went through mental and emotional strain doing all of that to get minimal to no feedback from professors who decided I simply wasn’t trying enough. And all of that compounds to educational trauma that makes it really hard to do design at all some days. I know I’m not alone in that educational trauma, and it’s not isolated to a disabled experience in design school, either. It’s just exacerbated by it.
The solutions that I found came near the end of my design school career, and due to the inflexibility of design school, mostly involved separating myself completely from the standard experience. I wound up substituting two independent studies for each studio credit I needed for my senior year to reach a credit hour equivalence. But those independent studies saved both my degree and my desire to do design at all. I was able to explore what it meant to be a disabled designer. It actually let me build and strengthen the skills I have naturally as a designer. I think this could have easily happened within a studio environment, but that flexibility was not something our curriculum could tolerate at the time. With those changes I was given the flexibility of workspace and medium, utilizing a lot more virtual resources, learning a lot more programs, and the ability to do more of my work from home. I also finally learned to advocate for myself at this point, which was the skill I’d probably needed all along. If every design student took a course on standing up for themself and advocating for their own needs, design school would be a radically different place in the best way possible.
In the workplace, I never found the oppositions that I did in school. The projects I was given had the freedom of approach that I needed to be able to use the programs I was comfortable with. I felt like I was working with my team instead of working against the designers around me. I felt like I had the space to learn what I was missing, while exercising the skills I already had. And I know I had a dreamlike team of designers around me, but I primarily found that the workplace was a much more flexible, kinder place, as long as I got the work done.
Photo caption: Deborah Lalush stands at the podium while presenting during IDSA's Women In Design Deep Dive event on March 31, 2022. She wears a dark coat over a white and orange striped shirt and black pants.
What are some of your favorite examples of successes and failures in universal design?
My favorite failure is the 'stramp.' They’ve been included in outdoor architectural features since the 60s, combining stairs with a ramp that runs diagonally through them. They look cool, but they’re so dangerous, not only for the wheelchairs on the narrow ramps that drop off to stairs but for any walkers on the stairs that have to cross the ramp on the way, and anyone with balance issues. And blind/low-vision walkers can easily fall or injure themselves where the stairs drop off to a ramp. It’s a clear example of an attempt at universal, inclusive design that didn’t bother to include a single disabled perspective in the design.
In terms of successes, I love to reference the Xbox adaptive controller—but specifically its packaging! Every piece of that controller could be opened by pulling a single tab at a time, requiring the user only have one way to pinch and pull. It could even be opened with the teeth if necessary. A lot more technology is starting to follow this example, and it’s wonderful. Not only is it a super intuitive process, with one clear tab to pull at each step (that’s good UX!), but it gives the user the dignity of opening the packaging themself, regardless of ability, where so often the dignity of a disabled user is thrown aside.
What are your tips for designers with disabilities, and for those who collaborate with them?
Include disabled designers in everything. Make them the experts on products for disability, because they are, but remember: disabled people use regular products too. We’re not just experts on disability; we’re experts on everything we touch. We’re experts on making things work to make our own lives possible, so we’re problem solvers in a way pre-disabled designers just aren’t.
Your users are designers. Just because they don’t have your training doesn’t mean they don’t know what they may need. They are the primary designer; you are simply helping to find and facilitate the solution with the training and expertise they lack.
If you don’t think of yourself as disabled, someday, in all likelihood, you will be. Design for aging and design for disability overlap because aging often brings on disability. So it will be design for you someday.
Address your internal biases against accommodations now, because the day you need them, if you still think of them as special treatment, you’re in for a hell of an ego loss. And don’t be afraid to ask for what you need.
For the disabled designers, the young ones, and the designers who feel trodden upon: YOU DESERVE TO TAKE UP SPACE. Your voice matters, your ideas are crucial, and you already have everything you need to be an important part of a team.
Let disabled designers take up space, and make noise, and be heard, and consider every user to be a designer for as long as you work