Conversations about Disability Design
Music Credit: “NY” composed and performed by Kosta T, from the cd Soul Sand, used courtesy of the Free Music Archive.
Josh Halstead: When you center accessibility, when you center disabled bodies and disability justice, and disability as a culture, you build new knowledge, and new knowledge springs forth new ideas. So that's one of the really wonderful and exciting things, and why I'm so engaged in this space because this really means rewriting a lot of what we know about design,
Jo Reed: That is designer and disability advocate Joshua Halstead talking about the promise of disability design and this is Art Works the weekly podcast from the National Endowment for the Arts—I’m Josephine Reed.
Today, the National Endowment for the Arts is publishing its Disability Design Report—Two years in the making—it’s a collaboration of the NEA’s Office of Accessibility and Design program. Simply put, disability design is the creation of spaces, objects, and garments designed by, with, and for people with disabilities. The purpose of the report is to get a better understanding of how designers in the U.S. are responding to the needs of people with disabilities. The report also wanted to see how people with disabilities are included in the design process as designers, leaders, and decision-makers. The NEA wanted to assess the current trends, challenges, needs and opportunities of the disability design field. Later on in the show, we speak to Grace Jun—a designer who has developed wearables for, and in process with, people with a variety of disabilities. But first a conversation with the researcher of the Disability Design Report Joshua Halstead. And yes, those are birds that you’ll hear in the background! I began by asking Josh to tell me a little more about what the NEA wanted him to explore.
Josh Halstead: They asked me to look at the design space at large, so everything from architecture to landscape architecture to graphic design, industrial design, fashion design, over the last five years, and look at how the space has been developing to meet the needs of disabled people.
Jo Reed: And before we go further than that, tell us a little bit about your background, and how you became interested and invested in this.
Josh Halstead: So I first and foremost was born with a disability, so how my body relates to environments has been ingrained in my lived experience since day one. I also went to design school, was and am a practicing designer and also a design professor. So I have the combined experience of living with a disability, and also being someone who is making and unmaking the world through design, whether it's through my own design or through the educational vector. So that kind of primed me for being a researcher on the project and knowing the space-- both spaces-- through and through.
Jo Reed: Before we begin with some of your findings, I think that we should talk about the two primary models of disability, there's the medical model and the social model, and I'd like you to talk about both and their significance.
Josh Halstead: So there are these two different models that I talk about in the report, the medical model and the social model. The medical model typically is positioning disability in the body, so looking at how bodies deviate one way or another from biophysical norms. The social model says that well actually disability isn't just created by bodies that move to the left or the right of maybe a standard deviation, but it's when bodies, again, meet space and environments that are designed without disabled body in mind where disability is produced. So social model is looking at that interaction between environments and bodies, and the medical model excludes environments in it's kind of proclaiming of disability.
Jo Reed: So you looked across the fields of design which are quite considerable. What were the key findings or trends that you really could see across all the design fields?
Josh Halstead: That's a big question. The first thing that I realize is that everyone is looking into it much more now than they were say five, ten years ago. So this idea of wanting to design with disabled people in mind is there. A big trend that I saw is folks adopting inclusive or universal design methodologies, so if someone in a design group says, "We need to build things with disabled people in mind, or accessibly," quote unquote, then the next question is how do we do that, and that's where the inclusive and universal design methodologies that have been around for years come in. So we see graphic design, industrial design, fashion design, taking in the lessons of universal and inclusive design, and rewiring so to speak the design process. So those are some big structural changes that are happening. And I could speak a little bit more granularly with respect to each different design discipline.
Jo Reed: Why don't we talk about public spaces and architecture and spatial design, and get a little granular about that. What are you seeing there?
Josh Halstead: Yeah. So one thing is that spatial design is following suit with considering the need to design things through this universal design lens, but the thing is that in the 80's Ronald Mayes who is a disabled architect himself started the universal design principle, so universal design and architecture has been linked for a while. So spatial design has moved forward fairly considerably and is one of the most visible so to speak spaces where disability is being seen not just as a physical reality but as a cultural phenomenon.so one example of that is DeafSpace which has been a project, again, since the early 2000's coming out of Gallaudet University architects have created new design principles around how to build public spaces specifically for the constituency of Gallaudet but they expandable across architecture writ large. DeafSpace is recognizing something like sign language as a cultural way of communicating and how design often is at odds with that language. Typically, for example, we have really narrow hallways and a classroom and a library and a laboratory, and DeafSpace widens those hallways to make sure that folks can both walk safely down a hallway but also look at one another and communicate. So it's making spaces not just safer, but it's kind of considering the cultural use of language within a disability constituency as a primary design consideration. So DeafSpace is continuing to be influential in public space, so a lot of really exciting things are brewing in the spatial design category.
Jo Reed: One thing that the report indicates is that a challenge and an opportunity, in fact, for designers is to stop thinking of disability as a design problem, and I'd like you to speak a little bit more to that and what the implications of that are and how to work through it.
Josh Halstead: So it gets back to the question of are we understanding disability through a medical or a social lens? Through the medical lens which is the most common if we're coming into disability without much exposure to disability communities or disability culture is to think about disabled bodies as problematic, bodies that are in need of fixing. So oftentimes with design groups that are thinking about disability-related design projects through a medical lens, the design projects seek to kind of remedy or fix someone's body, and that's not necessarily a good or bad thing, but it is a specific direction. It’s because the cultural understanding of disability has been highly and historically medicalized that folks-- even if they're well intentioned-- default to disabled bodies are themselves problematic. But moving away from that means that we're recognizing disabled bodies as just part of human diversity, and if disability isn't located in the body but is instead located at the intersection of bodies and spaces it really gives a lot of agency to designers to unmake and remake environments.
Jo Reed: Let me ask you, in your experience are designers or deign students being introduced to any kind of disability theory? Is part of their training to be introduced to this?
Josh Halstead: I'd say generally in this space, no. Generally it's we need to think about how to design more inclusively, and there's a really, really light introduction to disability but it's often something like okay, how would this product work for blind folks, how would this work for deaf folks, and the questions are how can we consider different ways of using products for bodies that have typically been excluded from our design processes or just our design imagination. There have, however, been a few, kind of a small group of scholars and designers mostly with disabilities and from a background in either disability studies or critical disability studies who have been slowly introducing disability theory into their work with their students, and into their work as consultants into that kind of professional landscape.
Jo Reed: What are the key recommendations does this report have to support disability design?
Josh Halstead: There are plenty of recommendations in the report, some that bubble to the surface for me in this moment are there is a big need after talking to a diverse set of folks involved in this space to have consistent spaces where they can meet. So whether that's a conference, that's a Zoom meeting now, right? Whether that's a Listserve, a place where we can all share ideas and then specifically share resources. So, having a space for folks to get together is a big takeaway. A second takeaway is really the need to consider disability from a cultural perspective, and also as a creatively generative force. So I go back to the example of DeafSpace just because it's I think a clear illustration of how thinking about disability and needs that exist within the people group can be cultural or are already cultural, and if we think about it as cultural it can be incredibly generative and the research supports this need to kind of shift into a cultural perspective to kind of mirror really the social justice landscape that's being talked about and experienced, frankly for all of us here in the States. So recognizing disability as a social justice thing as well.
Jo Reed: As I was reading the report, Josh, what I was wondering whether if this is an opportunity also and, again, I'm thinking about architecture and space-based design, whereas we have to factor in global warming and the environment, and really rethinking the way we use resources, it actually presents such a great opportunity to rethink everything with the way we approach space.
Josh Halstead: Right, right, yeah. I'll go back to something-- and I forget where I heard it but Sarah Hendren was giving a talk, where she says, "Well, we hear this popular thing around well every idea has been conceived already, so we're just copying." And she says that's frankly untrue because we really haven't considered historically what it means to design accessibly. So what you find when you center accessibility, when you center disabled bodies and disability justice, and disability as a culture, you build new knowledge, and new knowledge springs forth new ideas. So that's one of the really wonderful and exciting things, and why I'm so engaged in this space because this really means rewriting a lot of what we know about design, and just by virtue of centering bodies who have been historically marginalized if not excluded. So it's a really exciting space, and it has broad implications for everything that follows, in my opinion.
Jo Reed: And in putting this report together, what surprised you?
Josh Halstead: So what surprised me was actually the amount of disabled entrepreneurs out there, and I guess this should not have surprised me because in my lived experience, I always tell people I'm probably better suited to be a lawyer or an accountant because I see everything really rigidly in black and white so to speak, but I'm a designer because I was put into a world that wasn't necessarily planning on me being around. <laughs> So I've had to make and remake a bunch of environments, and I became a designer by virtue of my body, and so I saw a lot of disability entrepreneurship happening coming specifically from disabled designers and disabled business owners. So another big takeaway really is that there needs to be funding and more publicity really for disabled entrepreneurs who are making their own access, and by virtue are then making experiences much better for tons of people, disabled or not.
Jo Reed: Josh, any final thoughts about this? Anything you'd like to add?
Josh Halstead: Yeah. So my last note would be that if we want to change the issue of inaccessibility and really move the needle forward we need to take a hard look, frankly, at the spaces where design happens, and start making these places accessible, welcoming disabled people in, and inviting their lived experience as expertise into design processes. All of disability theory comes from the lived experience of disabled people, it's how disability studies started. So if we get disabled people in the door then over time the places that we experience will change because we have a more diverse constituency thinking about what it means for something to be "good" design.
Jo Reed: Okay. That's a good place to leave it Josh. Thank you.
Josh Halstead: Thank you so much.
Jo Reed: That was designer and disability advocate Joshua Halstead—he’s the researcher of the Disability Design Report commissioned by the National Endowment for the Arts. You can find the report at arts.gov This is Art Works, I’m Josephine Reed….Next up, we’ll take a look at disability design in action with Grace Jun. As a designer, professor and social entrepreneur, Grace Jun develops clothing and graphic interfaces for people with disabilities. And just as importantly, she’s also developed a collaborative interactive process of design that puts disabled people in the room and at the table. An assistant professor at the University of Georgia's Department of Graphic Design, Grace Jun is also the CEO of Open Style Lab an innovative design hub and that’s where we began our conversation.
Grace Jun: Open Style Lab started in 2014 at MIT as a public service project, and at the moment we incorporated as a 501c3, and being part of one out of three board members we really look at how to make style accessible through design and technology for people of all. So most of the last few years of research has been looking at how could design leverage more accessibility and have that conversation as a more equitable playing field.
Jo Reed: So accessible clothing is still a barrier for people with diverse abilities, and that also includes a rapidly aging population.
Grace Jun: Oh yes, absolutely. I think for the first four or three years we worked on bespoke clothing that we partnered with people with disabilities and collaborators with disabilities to make I would say adaptive but also accessible clothing just in general. It's almost like, you know, we're all becoming disabled at some point whether people like to admit that or not, and our surroundings especially even the clothes we wear are not designed to be more accessible for our needs. So it's just really starting that conversation in a tangible way and also in an educational way where we could be more I think mindful of the way we get dressed, but how that's so much impacting the quality of life and our way to have independence.
Jo Reed: There's the way to have independence, and that also goes into the issues that people with diverse abilities often have around employment, and we know the way you present yourself is crucially important, and how clothing when it actually can be helpful is wonderful when it's not constraining us.
Grace Jun: Yeah, absolutely. I mean I think just personally I've had a few injuries and experiences with temporary disability, and one of our board members has ALS, and so we talk about this a lot that whenever we have a client meeting or we're public speaking, the last thing you want is clothing that you won't have any difficulty wearing, right? So if it takes you an hour to button your cardigan and your dress shirt, and you're trying to fit in with the staples of professional looks or professionalism, it shouldn't be a barrier, it shouldn't be an issue at this point, but it is for many people. Same thing goes for employment for I think uniform wear, so if you have a certain dress code that you need to meet as a uniform whether you're in public service, or if you're in the medical field for example, there aren't many clothes that I think address a lot of the paralysis, dexterity, and of course invisible disabilities that are very personalized for each body.
Jo Reed: Now at Open Style Labs you work with designers, engineers, physical therapists, and people with disabilities, and you all work together on this. Explain this process and how it works.
Grace Jun: Oh. Oh my goodness, this process <laughs> has been a huge eye-opening experience for me just because I think to be out of your comfort zone outside of, for me, the design or artistic field, and working with someone who has experience in physical therapy or someone who's in material sciences is, so I think relieving and also insightful. So the last four years we've definitely had more programs that did partnerships with these various groups and people with various disciplines, and currently we employ at least half of our people who are parttime or freelancing have disabilities. So I think it's essential to even talk about accessible clothing or design from diverse perspectives because, for example, I remember we had a team project and we were learning about a rain jacket where we were thinking about having a seam on the back, and immediately I think one of the occupational therapists was like, "That's going to cause a pressure sore. You can't have the seam there, it's not going to be good for the person who's sitting who has this type of range of motion," and so we never thought of those factors when we were designing, and it influences of course the materials you use, the design choices you make, and of course I think considering that the body isn't static, that it's continually moving.
Jo Reed: <laughs> You’re a teacher as well as designer. Do you teach inclusive design?
Grace Jun: Yeah. So I had taught at the Department of Fashion at Parsons School of Design, and I just joined the University of Georgia's Department of Graphic Design, and it's because my research really centers on use cases for wearable experiences it's kind of like a bridge where fashion meets user experience, and the way we look at I think the clothing that's close to our bodies as like an extension of ourselves, and I hear this a lot because I talk to a lot of my friends who use assistive devices, or even like wheelchairs, prosthetics, and a lot of it is personalized. So it makes me imagine that it's no longer just about looking at a piece of clothing or cloth or material but how that experience is translated with meaning.
Jo Reed: I'm curious about the students you teach. Do you find that you have people with diverse abilities in your classroom? That's part A of the question, and part B is how much experience do these students have in thinking about people with diverse abilities, your students?
Grace Jun: Oh, that's great questions. First question is unfortunately I don't have too many students who have disabilities, and if I do many of them have invisible disabilities, cognitive disabilities, but mostly I think it's really a big change we've got to make in higher ed to have more accessible spaces and classrooms that are inviting, and also probably financially affordable <laughs>, but I won't get into that. The second I think is really many of them have not been exposed to working in such a collaborative, direct way around accessibility or disability, and I think it's because students, they're great, and a lot of the students I've had are really mindful, and this generation is quite aware <laughs> of a lot of social issues that I don't think I was aware of, and so they're mindful, they have the thoughtfulness, and they have the intent, but they haven't been exposed to working with, for example, someone who may be in a creative field but has spinal cord injury, and making those environments within the classroom as well as outside is something I have enjoyed doing.
Jo Reed: So when your students are exposed to this, it opens their minds up, they respond positively.
Grace Jun: Oh, of course. I think there are some struggles here and there. I think it's because you don't want to prescribe a certain ability as a main characteristic to a person, and so that's like the first thing I think they start learning is to see disability as a holistic human experience rather than just like a state that's predetermined, or a medical statistic. So I think just having that mindset itself definitely is a big change, but I wouldn't say it's easy. <laughs> It's almost taking apart a lot of I think preconceptions about what disability is without having experienced it.
Jo Reed: It seems to me also, Grace, that as we're thinking about inclusive design, taking that and as we think about where fabric comes from and who is creating that fabric it really fits into this piece of a large conversation, an important piece, but it's also perfect timing to be having this conversation.
Grace Jun: Yeah, and I think the first thing people think when they hear about Open Style it's fashion and clothes, and we make clothes, but we really kind of see fabric as one of the many components that we use through design, and the reason why is because we've been successful enough to manifest it as a team on like something that's visual, right? Like a beautiful bespoke clothing for someone who has spinal cord injury and someone who doesn't, and I think those factors are really coming to play in inclusive design, and making that more commonplace, is some of the challenges that I think we face.
Jo Reed: How can we increase people who have diverse abilities, how can we increase access to fashion and not just to accessible clothing but to the actual process of designing and creating it?
Grace Jun: I think definitely education, and that's why I've stayed in higher ed <laughs> with my mixed feelings about it because there's so much we can learn from each other rather than thinking about the end product always or solely something to sell and scale, there's still so much to be learned, and I see this also in industry when they approach us for special projects or consulting, these are big companies that are like, "Oh we want some sort of HR training, or a lecture on inclusive design," and learning doesn't stop at college, nor does it stop at a master's program or high school. So it's really clear to me that it's more like lifelong learning, and how we could incorporate that throughout beyond school is something that I'm thrilled and interested in.
Jo Reed: Can you give me an example of a design or two from Open Style Lab that you really think speaks to this?
Grace Jun: Yes. Since the pandemic, let's be real, we all had to stay inside and think about creative ways to bridge and merge all of our opinions, perspectives, and skillsets through something. So we created a series of journals this you're to interview every month a group of people with disabilities that we've gotten to know and be friends with, as well as creatives in various industries, and try to really just ask the question, “is it necessary to have style accessible?” What about personal expression is so important for people, and how does that manifest beyond just clothing but maybe the whole dressing experience, the shopping experience, or just I think the human rights factor that we don't really talk about and how that relates to design, and so finding that I think through research and just taking the time to talk to people and to document that and to share their stories this year was really something that I'm very proud of.
Jo Reed: I'm wondering with those journals if there were any answers to that question that really stuck with you?
Grace Jun: Oh yes. I think many of them correlated that style has a direct impact on self-esteem, and when I mean many, the people that we interviewed primarily this year were women identified. We're trying to bridge out to more male identified, queer, of course LGBTQ and nonbinary, but we started with a select group because we did have a heavy subscriber use for women identified people, disability and non-disability participants, but many of them had said that style really directly correlates to their self-esteem, and that it's essential for personal expression and therefore vital for the workplace and social place when, you know, say you go to a wedding like I just had <laughs> and you are a bridesmaid, and you don't have the right outfit to wear, do you either stand out or do you find something, and where do you find it, how do you get access to this? And so, instead of like thinking of it as products I've been trying to shift this mindset that it's about the skillsets that we're trying to transfer. So a good example of it you might have seen or I hope people have seen on Hulu, the Design for All documentary it was sponsored by Target, and it covered a 2019 summer program that Open Style Lab did in collaboration with NYU Langone's Initiative for Women with Disabilities. And so we really try to incorporate some of the skillsets of how to hack your own clothing, how to design and make and become a hacker yourself, because we realized the girls that we worked with at NYU who had various disabilities, you know, it wasn't about giving them a nice, adaptive dress, it was about empowering yourself, and being able to speak about your own body, and to express about yourself in a way that you wanted to, so that I think just really ties into education as a whole.
Jo Reed: And what are the challenges do you think with bringing this thinking of inclusivity, of thinking about all of us, what are the challenges to bringing that more into the general public, to the market certainly, but to simply our ways of thinking?
Grace Jun: Oh, it's a lot about just spreading the word and, you know, you're doing this for us quite well <laughs> today, and I'm so grateful for these opportunities because it really helps bring more attention, and I hope it empowers more people to either start their own businesses or have a class on adaptive fashion, you know, on their own if they're professors or educators or instructors, and so for me it's more about trying to spread as much as possible in scale this type of thinking and learning, and publishing, and one big thing I think I found difficult was really publishing this type of information. I've had some backlash on, you know, this isn't a good fit for something in design or I don't know if this really fits in this category or it's not academic enough, and to be honest it's something that is kind of lived, and the big difference with I think Open Style Lab is that we actually put inclusive design in action, and to capture that into writing or a podcast or imagery is so hard to explain at times, but it's so necessary.
Jo Reed: Mm-hmm. Yeah, I hear that, and people love their categories. <laughs> And Grace, finally, what have you learned by doing this work?
Grace Jun: Oh, I've learned a great deal. First I think just personally balancing work-life, <laughs> really not martyring myself over for exciting design projects or people, because it's a huge undertaking, and then second I think having learned a lot about intersectionality, that you can be identified as Asian-American but also someone who has a disability for example. You can be many things, and that complexity of being human is still something I'm learning to translate through design, and hopefully with Open Style Lab.
Jo Reed: Grace, thank you first of all for giving me your time, and thank you for this work that you're doing.
Grace Jun: Oh, thank you so much.
Jo Reed: That’s designer and CEO of Open Style Lab Grace Jun—you can find out more about their work at OpenStyleLab.org. And don’t forget, you can access the Disability Design Report at arts.gov. You’ve been listening to Art Works the weekly podcast from the National Endowment for the Arts. I’m Josephine Reed—Stay safe and thanks for listening
This week, we turn our attention to the newly published report Disability Design, commissioned by the National Endowment for the Arts. First, a conversation with the report’s researcher—designer, teacher, and disability advocate Joshua Halstead. He gives us an overview of report’s findings, the challenges disability design faces, the opportunities it presents for all of us, and some recommendations for moving forward. Then we take a look (or a listen) to disability design in action with Grace Jun. She’s a designer, professor, and CEO of Open Style Lab—an innovative hub committed to inclusive design and, just as importantly, an inclusive design process. Both are fascinating conversations about this exciting and promising design field.