To better understand current trends in the disability design field, the NEA commissioned a field scan, which included a review of recent research and news articles as well as interviews with key subject matter experts. This report provides a summary of the field scan, sharing current trends and making recommendations for disability design in public spaces and for the human body and mind. October 2021, 48 pp.
And check out our podcast interview on disability design with Joshua Halstead, author of the NEA’s report Disability Design, and Grace Jun, CEO of Open Style Lab.
To better understand current trends in the disability design field, the NEA commissioned a field scan, which included a review of recent research and news articles as well as interviews with key subject matter experts. This report provides a summary of the field scan, sharing current trends and making recommendations for disability design in public spaces and for the human body and mind. October 2021, 48 pp.
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 a conversation with the author 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. 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 author 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 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: 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 , 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 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. 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 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 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 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. 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, 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
Emmy Award-winning actor Jimmy Smits will take viewers on a virtual trip across the country 2021 National Endowment for the Arts National Heritage Fellows live and work. The pre-recorded virtual presentation will be webcast free to the public at arts.gov/honors/heritage.
Read more about The Culture of America: A Cross-Country Visit with the 2021 National Endowment for the Arts National Heritage Fellows
Read more about the announcement of the 2021 NEA National Heritage Fellows
Washington, DC—The National Endowment for the Arts, in partnership with the National Council for the Traditional Arts, will present The Culture of America: A Cross-Country Visit with the 2021 National Endowment for the Arts National Heritage Fellows, on Wednesday, November 17, 2021 at 8:00 pm ET. Emmy Award-winning actor Jimmy Smits will host the film and take viewers on a virtual trip across the country where this year’s National Heritage Fellows live and work. The pre-recorded virtual presentation will be webcast free to the public at arts.gov.
Recognizing artistic excellence and contributions to our nation’s traditional arts heritage, the National Heritage Fellowship is our nation’s highest honor in the folk and traditional arts. “The traditions of these culture bearers are shared in this film as stories of community, of unity, and of individual pride for one’s heritage,” said Ann Eilers, acting chairman of the National Endowment for the Arts. “The diverse artforms of the National Heritage Fellows invite us to understand and appreciate the experiences of the past and allow us to see a bright future where culture grounds us and new ideas take hold.”
During the one-hour film, viewers will:
Hear the music of Cedric Burnside as the rhythm of Hill Country Blues pulses through the neighborhoods of North Mississippi. Burnside credits his family before him for the knowledge and encouragement to pursue performing and writing music as he passes the tradition on to the next generation through his daughter.
Join Tagumpay Mendoza De Leon and his Rondalla Club of Los Angeles to learn how the rondalla music of the Philippines connects the community of Filipino Americans to one another. “Uncle Pi” has been teaching rondalla for 20 years, helping his students learn about themselves and their Filipino culture.
Connect with the essence of the Osage people as Anita Fields (Osage/Muscogee) shares Osage ribbon work and how her creative works have contemporary influences while paying tribute to the ancestors.
Take a trip down memory lane with Los Lobos as members of the band reminisce about their beginnings in East Los Angeles, California, and the folkloric musical influences that are embedded in their music, which provide the roots for the band’s own sound today.
Meet Joanie Madden at her home in the Irish American neighborhood of Yonkers, New York, to learn about her lifetime love of music that was passed down through her family and that she continues to share through her group, Cherish the Ladies, which plays traditional Irish music for audiences all over the world.
Explore Chicago, Illinois, with Reginald “Reggio The Hoofer” McLaughlin as he taps his way through the park, in the subway, across bridges, and on the streets. McLaughlin’s infectious energy and love for dance convey a joy that will have viewers tapping along.
Connect with Nellie Vera Sánchez in Moca, Puerto Rico, where the intricate bobbin lace practice of sewing mundillo has a long history. Vera shares patterns and designs that were taught to her with love and how she continues to pass on the art form.
Learn about the Easter Rock ritual as Louisiana’s Winnsboro Easter Rock Ensemble maintains the African American tradition which combines music and food with Christian and West African influences.
Visit Tom Davenport at his home in Delaplane, Virginia, as he shares the importance of documenting history through filmmaking and how he created Folkstreams—a free independent film streaming platform—as a way to share American traditional cultures with the world. Davenport is the 2021 recipient of the Bess Lomax Hawes National Heritage Fellowship, presented in recognition of an individual who has made a significant contribution to the preservation and awareness of cultural heritage.
Jimmy Smits is known for his roles in the television dramas NYPD Blue and The West Wing and more recently, in the movie adaptation of Lin-Manuel Miranda’s musical In the Heights. Co-founder of the National Hispanic Foundation for the Arts, Smits is lauded for his impact as a Latinx actor and for advancing access for Latinx artists in the media.
Join the conversation on Twitter using the hashtag #NEAHeritage21. The Culture of America: A Cross-Country Visit with the 2021 NEA National Heritage Fellows will continue to be available to watch on arts.gov following the November 17th debut.
About the National Heritage FellowshipsThe National Heritage Fellowships are the nation’s highest honor in the folk and traditional arts. Including the 2021 class, the Arts Endowment has awarded 458 National Heritage Fellowships, recognizing artists working in more than 200 distinct art forms, including Japanese classical dancer Gertrude Yukie Tsutsumi, Tejano musician and singer Manuel “Cowboy” Donley, Passamaquoddy basketmaker Molly Neptune Parker, leatherworker James F. Jackson, oud player and composer Rahim AlHaj, and quilting community advocate Carolyn Mazloomi. More information about the National Heritage Fellows is available on the Arts Endowment’s website.
About the National Endowment for the ArtsEstablished by Congress in 1965, the National Endowment for the Arts is the independent federal agency whose funding and support gives Americans the opportunity to participate in the arts, exercise their imaginations, and develop their creative capacities. Through partnerships with state arts agencies, local leaders, other federal agencies, and the philanthropic sector, the Arts Endowment supports arts learning, affirms and celebrates America’s rich and diverse cultural heritage, and extends its work to promote equal access to the arts in every community across America. Visit arts.gov to learn more.
(counter-clockwise from bottom left) Treshelle Edmond, Ali Storker, Amelia Hensley, Lauren Luiz, Kathryn Gallagher, Krysta Rodriguez, and Alexandra Winter in the Deaf West Theater production of Spring Awakening. Photo by Joan Marcus, 2015.
The National Endowment for the Arts has played a key role in educating and investing in accessibility in the cultural sector and the work of disabled artists since the late 1970s. We continue this work today through technical assistance and grantmaking to arts organizations to expand capacity for accessibility, arts learning, and arts programming for people with disabilities and support for disabled artists. According to the CDC, people with disabilities comprise 25 percent of the population, and 30 percent of families have a person with a disability. The disability experience is part of the human experience.
The NEA is also looking inward at its own policies and practices for equity in response to White House executive orders that call on agencies to “pursue a comprehensive approach to advancing equity for all, including people of color and others who have been historically underserved, marginalized, and adversely affected by persistent poverty and inequality,” and to “strengthen the federal workforce by promoting diversity, equity, inclusion, and accessibility.” We are therefore centering disability and accessibility as a key part of this equity work.
The NEA is looking at equity in our grantmaking systemically. We are tracking ways to expand disability inclusion across our agency, with ongoing, continuous engagement. Internally we are seeking work beyond merely meeting hiring goals but building it into our culture and who we are as an organization.
As part of National Disability Employment Awareness Month, Beth Bienvenu, director of the NEA’s Office of Accessibility, and Darrell Bogan, director of the NEA’s Office of Civil Rights and Equal Opportunity, took a deeper dive into the NEA’s work around disability equity.
Q: How do disability and accessibility fit into the diversity and equity agenda at the NEA?
DARRELL BOGAN: When the current administration implemented the Executive Orders on racial equity, we knew that disability needed to have a seat at the table. We included Accessibility Director Beth Bienvenu in our working groups to ensure that disability was part of our response to the orders and of our strategic planning. We see the disability community as a vital part of diversity and equity.
BETH BIENVENU: We have always placed a priority on accessibility and support for disabled artists. We are the only cultural granting agency in the federal government that has an office specifically designed to provide technical assistance to the field around accessibility and address issues specific to disability in the arts. Internally, we conduct training for staff throughout the year and are continually evaluating how we can improve our grantmaking to be both equitable and responsive. Externally, we not only provide technical assistance to applicants and grantees, we also engage with the arts community through convenings, presentations, and training to service organizations and to local, state, and regional arts agencies. By joining with the agency’s greater equity work, we can elevate the attention to disability and accessibility both internally and externally, and align it with our overall equity agenda.
BOGAN: We’re also focusing on improving our disability hiring, using the Schedule A Hiring Authority to recruit persons with disabilities. We plan to expand our recruitment efforts by partnering with the Workforce Recruitment Program and Wounded Warriors. This is part of a long-term strategy to continually support hiring and retention of workers with disabilities.
Q: What approaches has the NEA taken in the cultural sector to advance disability equity?
BIENVENU: Since its earliest days, the NEA has served a key role in both educating the arts field on federal accessibility requirements and advancing disability equity through grantmaking. Starting in the 1970s, when the Rehabilitation Act of 1973 was implemented, we worked with the state arts agencies and regional arts organizations to train and educate arts organizations on their requirements. When the Americans with Disabilities Act was passed in 1990, many cultural organizations were ahead of the curve. We continue to educate the field because we recognize that there is still work to be done.
We also have supported many organizations that provide arts experiences and arts learning for people with disabilities, as well as professional opportunities for disabled artists, from arts companies such as Heidi Latsky Dance and Phamaly Theatre Company to artist residencies such as the Anderson Center’s Deaf Artist Residency and the 3Arts residency for disabled artists to arts education organizations like ArtMix Indiana and Arts For All Florida.
Q: What can arts organizations do to promote equity and be fully inclusive of people with disabilities?
BIENVENU: There are many things that arts organizations can do to make their programs inclusive and equitable for people with disabilities; some that can be easily implemented and some requiring more investment. The following are a few steps to take, though this is just the start of a full equity process:
Assess your physical space for accessibility, using a checklist such as the ADA Standards for Accessible Design.
Ensure that you are providing effective communication for your programs and exhibits, including captions, ASL interpretation, and audio description for videos and live or virtual events; Braille and large print materials; tactile experiences for people with vision disabilities; sensory friendly experiences and quiet spaces; and accessible websites.
Ensure that people with disabilities can participate in your programming and not be relegated to segregated programs. Extra activities such as quiet hours or touch tours can provide access, but visitors should be able to attend regular programming at any time and receive accommodations for those events.
Engage in targeted hiring to include people with disabilities in all levels of your staff and ensure they are part of your board and volunteers.
Look for disabled talent in your casting, curating, exhibiting, and presenting.
Consult with your local disability community when assessing your physical space and developing programming. Hire advisors and people with disabilities who can assess your facilities for physical accessibility and test your website.
Q: What is on the horizon for the NEA regarding disability equity?
BOGAN: Our goal is to ensure that disability is an integral part of our organization. We plan to be deliberate and intentional in our recruiting and retention efforts. Those retention efforts are centered on equipping our employees with the tools necessary to be successful in their jobs. In addition, we’re monitoring our progress in ensuring people with disabilities are represented in all levels of the organization, creating pathways to leadership positions.
From an external perspective, our long-term strategy in performing compliance reviews on organizations that have receive federal funds from the NEA is to ensure they comply with federal laws and regulations that govern accessibility in the arts. We’re going to be checking for that as part of our compliance reviews.
BIENVENU: And while compliance work is important, true equity goes above and beyond merely following the law. Arts organizations need to think deeply and broadly about their disability equity work, including employing people with disabilities as staff and as artists. That is the message we want arts organizations to take away from National Disability Employment Awareness Month.
Beth Bienvenu is the director of the Office of Accessibility at the National Endowment for the Arts, where she manages the NEA’s technical assistance and advocacy work devoted to making the arts accessible for people with disabilities, older adults, veterans, and people in institutional settings.
Darrell Bogan is the director of the Office of Civil Rights and Equal Opportunity Employment at the National Endowment for the Arts.
Josh Halstead: 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. So 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. 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.
I first met Alice Sheppard and Laurel Lawson in 2016 at the Future of Physically Integrated Dance convening organized by AXIS Dance Company in New York City. That same year, Sheppard founded Kinetic Light, a project-based ensemble of three disabled artists including Sheppard, Lawson, and Michael Maag. Since that time, Kinetic Light has put disability aesthetics center stage in works like Descent, a touring production that premiered in 2018 and features an architectural ramp installation designed by Sara Hendren, Yevgeniya Zastavker, and students of Olin College.
Sheppard and Lawson continue to elevate disability aesthetics and culture and call the field to join them. Their artistry infuses access into every element of their work from the development of specially designed wheelchairs for performing to the creation of Audimance, the company’s app for audio descriptions.
Following is an interview conducted with both artists while they were in a bubble residency developing work. They generously shared their experiences in dance, the reasons why they focus on equity and access rather than inclusion, and an invitation to join them in this work and the possibility the future holds.
This story first appeared on the blog in July 2021. Read the full interview here.
Sara Nash has been the National Endowment for the Arts Dance Director since August 2018.
Jo Reed: Welcome to “Quick Study,” the monthly podcast from the National Endowment for the Arts. This is where we’ll share stats and stories to help us better understand the value of art in everyday life. I’m co-piloting “Quick Study” with Sunil Iyengar. He’s the Director of Research and Analysis here at the Arts Endowment. Hey, Sunil.
Sunil Iyengar: Hi, Jo.
Jo Reed: Well, I know it’s Arts and Humanities Month and because of that you wanted to focus on the really critical importance of local arts agencies and the roles they play in their towns and neighborhoods and especially now as the arts are struggling to find its footing in the post-pandemic. But I really want to begin before you launch into that really interesting stuff–
Jo Reed: How do we define local arts agencies? What are they?
Sunil Iyengar: Sure. So local arts agencies are often hidden gems within the community. So just allow me, stick with me for this sparkly metaphor, Jo.
Sunil Iyengar: They’re like hundreds of points of light dotted across the landscape of arts funding in the U.S. Some of them are departments of local government, but others are standalone nonprofit organizations and there are even hybrid models out there. They’re big, small or mid-sized and they offer different programs and services. This was the gist of a blog post I did earlier this week, that local arts agencies are the connectors and intermediaries for artists, arts organizations, audiences and visitors in the community. Each local arts agency is unique but they all seem to have this galvanizing function for the arts in the towns and neighborhoods where they’re situated.
Jo Reed: Okay. And where do they typically get their funding?
Sunil Iyengar: Short answer, anywhere they can. Seriously, there’s some money from the federal government, notably the NEA, but also from state arts agencies, municipal budgets and private donations whether individual or corporate. Many of the larger local arts agencies are now funded through dedicated revenue stream like hotel or motel tax revenues but, you know, Jo, what’s particularly interesting is that they have many different funding models so they can really get out there into the community. Some service a single city, others multi-city, single county, multiple counties, cities and multiple states or what have you.
Jo Reed: Now that we have that out of the way, let’s talk about their importance and especially now in our post-pandemic world. Have there been research and studies that have looked at local arts agencies and recovery?
Sunil Iyengar: Yeah. I think to understand the outsize role of local arts agencies and why they’re expected to play a vital role in recovery, we have to kind of step back and understand some larger trends in the way the sector’s been operating during COVID. We did a report last year where we found that local community ties were going to matter more than ever for arts organizations to get back on their feet and to keep from shutting down. That’s because obviously so much travel and tourism has slowed down and arts organizations have had to look hard at their back yard to identify new audiences and visitors, partners and investors and also to align their programs more closely with local needs. Many arts groups are doing this brilliantly, but local arts agencies can accelerate this process because they’re in the business of fostering these community ties and helping local arts organizations thrive.
Jo Reed: Is there research then to support that local arts agencies really can be real catalysts for growth for different arts organizations?
Sunil Iyengar: Yes. There’s certainly local, you know, some studies at the local level. But I think, you know, I just spoke about looking at your own back yard, but it’s ironic that sometimes you get a wakeup call by reading about what’s happening internationally. So I came across a couple of reports lately. One was a write-up of lessons learned so far about COVID-19 in the global cultural and creative sector. It’s by David Sargent and the Center for Cultural Value based in the U.K. He cites in a quote here, enriched sense of localism and rootedness during the pandemic and that throughout this period the cultural and creative sectors have “enlarged their local professional networks and many have started consciously building stronger local practices and relationships since COVID.” Because of these factors, he predicts that “cities and regions will be able to see their cultural and creative sectors and cultural participation as powerful engines of social regeneration in their own right.” I have another study, if that’s okay.
Jo Reed: Yeah. No, please, tell me.
Sunil Iyengar: So similarly, in a World Bank Report issued earlier this year with UNESCO, the authors write that, “The transformative impact of cultural and creative industries will not be fully realized without policies and enabling environments at the local level, complemented by partnerships across levels of government and a range of stakeholders including the private sector, civil society and local communities.” To me, as someone in the U.S., that reads like a call for greater recognition than celebration of local arts agencies.
Jo Reed: It leads to my next question because I was going to say, so what do local arts agencies need to thrive and to help the arts to thrive?
Sunil Iyengar: Well, broadly speaking, more support. Fortunately, in administering the American Rescue Plan, the NEA is making awards to designated local arts agencies for the purpose of subgranting COVID relief dollars. This will allow those monies to go, you know, flow directly to local arts agencies and the arts organizations, artists and communities they serve. Also back in April, we awarded more than $52 million dollars to state and jurisdictional arts agencies and regional arts organizations also for regranting in those areas, which I’m sure is benefitting local arts agencies as well. Finally, I want to plug the fact that the NEA already has an annual funding opportunity for local arts agencies both for programming and subgranting. So if you’re a local arts agency out there, please go to arts.gov to check it out.
Jo Reed: Okay. And that’s a good place to leave it. Sunil, thank you.
Sunil Iyengar: Thank you, Jo.
Jo Reed: I’ll talk to you next month. That was Sunil Iyengar. He’s the Director of Research and Analysis here at the National Endowment for the Arts. You’ve been listening to “Quick Study.” The music is “We Are One” from Scott Holmes Music. It’s licensed through Creative Commons. Until next month, I’m Josephine Reed. Thanks for listening.
Join the Creative Forces®: NEA Military Healing Arts Network for a webinar exploring the unique experiences, challenges, and strengths of military-connected populations, and the role of creative arts programming in serving these individuals. Hear from the authors of two upcoming Creative Forces-associated publications on this topic as they discuss support strategies ranging from clinically-based therapy interventions that address physical, emotional, and social needs to community-based engagement activities designed to promote social connection, resilience, creative expression, independence, and successful adaptation to civilian life.