Although they may not be the only artist with a disability at the Whitney Biennial, Emily Barker says "I’m the only artist in it that’s explicitly making work about disability."
At My Limit, 2019, 3-D-printed articulated hand, electrical wires, and miscellaneous hardware, 20 lb.weight, 29 × 13 × 12 inches. Images courtesy of the artist, unless otherwise noted.
When I teach disability studies, the first reading I often assign is a seminal essay by Lennard J. Davis called “Constructing Normalcy,” which intertwines how the fields of art history, statistics, literature, and Marxist economics created the relatively recent conception of “standards of conformity and deviation” in the mid-1800s. Alongside that reading, I show Emily Barker’s sculptures and installations, which invite viewers to physically consider—not merely think about—these intersections and what it is like to move through the world as a wheelchair-user. Barker’s work takes up how treacherous both the details in domestic space and larger structural systems in the medical industrial complex have been for them. Their work moves between many worlds and many scales to highlight the friction that’s omnipresent for individuals with disabilities when participating in communities, systems, universities, cities, companies, nations, or cultures.
I first met Barker amid the jumble of Manhattan’s financial district, where we had scheduled to meet for an interview at a coffee shop. That coffee shop turned out to be underground and not accessible by wheelchair. We scrambled to find nearby alternatives, and only three shops later we found one that had the essential quality of no stairs at the entryway. The second time we spoke was on the phone. Barker was fresh off a flight back to Los Angeles where they live and, once again, the reality of being a wheelchair-user was at the fore of our conversation because the airline had broken several components of their wheelchair. Never have the physical circumstances of an interview so deeply reiterated for me and connected to the content of our discussions. They point to the deeply unsettling fissures between the ways people who are able-bodied and those with disabilities access and experience the built environment. More often than not, these divides are invisible to or ignored by able-bodied individuals, yet Barker illuminates the omnipresent physical and organizational structures that shape all of our movements.
Installation view of Kitchen, 2019, in the Whitney Biennial 2022: Quiet as It’s Kept, thermoformed PETG plastic cabinets, rivets, and wooden base, dimensions variable. Collaboration with Tomasz Jan Groza. Photo by Ryan Lowry. Courtesy of the Whitney Museum of American Art.
Ayden LeRoux: While teaching, I usually show a video of a TED talk by Sinéad Burke, where she discusses, among other things, the obstacles of moving through the airport as a little person. Even just now, when you and I were looking for a place to have this conversation, when we finally found a café you could enter, it didn’t have a bathroom. Kitchen, your sculpture of a kitchen counter and closets, which is currently showing at the Whitney Biennial, speaks to similar experiences.
Emily Barker: That piece, which is from 2019, is built for someone who stands taller than a wheelchair-user and mimics the height at which I, sitting in a wheelchair, experience my kitchen counters: they come up to my chest. The scale becomes a forced perspective that I created so standing people can experience the conditions by which I experience the world. People have often been shocked when walking through it and recognizing the height at which I interact with built structures such as countertops. Our entire constructed environment serves only people who are taller and can walk, yet people in wheelchairs are paying the same amount in taxes for infrastructure. But we can’t even use the sidewalks.
I’ve made many works that show how difficult it is for us to interact with the built environment. I’ve created 3-D renderings for spaces, including bars, curb cuts, and other stuff. Visually, the kitchen was the most interesting. Countertops are something that can ruin someone’s daily life. I like cooking a lot, but when the countertop is not at the right height, things are incredibly difficult. I have to carry food to a table to cut and prepare it, and then carry it back in my wheelchair. Using a stovetop is another hurdle altogether. Our built environment is based on ideology and assumption that there’s a standard for everything, even a kitchen. Apparently, the only person who is considered “normal” is a tall white dude. The Kitchen makes that really click for viewers of my work.
AL: Tell me about the choice of material. The sculpture is so translucent and ethereal.
EB: The material is related to my body’s constraints. I cannot lift anything over twenty pounds due to spinal precautions. If I built it out of wood or glass, I wouldn’t be able to assemble it myself. The natural choice of material was vacuum-formed plastic. It’s lightweight and durable enough so that I can lift it up and assemble the pieces myself.
Tomasz Jan Groza assisted with the fabrication. He makes the forms and pulls the plastic over them. The translucent plastic is beautiful, and it looks different depending on the time of day; if it’s by a window, it gets more opaque or translucent depending on the light. Every time you see it, it’s a little bit different. For me, that temporality is very interesting.
Hierarchy of Needs, 2019, digital print on paper, 57 × 33 inches.
Artist talk by Emily Barker, Ideology, Ableism, and Capitalism, April 13, 2022 at the Whitney Museum of American Art, New York. Photo by Christine Butler. Courtesy the Whitney Museum of American Art.
AL: How do you conceive of time? A lot of my queer community talks about queer time as being nonlinear. Our perceptions are different when you don’t come from the position of hegemonic and heteronormative body standards. How does time play a role in your work?
EB: I don’t perceive time at all. I have to accept my condition and exist outside of time. Everything I do, to some degree, relies on other people helping me. It’s very hard to stay on time when getting out of the house requires the help of another person. I spent more than two years of my life in a hospital bed. If I’d had a clear conception of time during those two years, I’d have probably lost my shit. It’s been a protective mechanism to exist outside of time, because it would be so frustrating to see time as anything but the social construct it is. I’m just trying to exist in each moment as pleasantly as possible for my own mental well-being. I also have CRPS [complex regional pain syndrome], which is the worst pain disease in the world—it can kill you. I’ll get these episodes when it feels like my legs are being sawed off for multiple days. If I exist within that framework of time, my disease becomes a lot scarier to have.
AL: If you had to anticipate all the things you go through in a day and think forward in time, you wouldn’t be able to leave the house.
EB: Right. I would lose my mind. I have to stay very Zen because my autoimmune disease flares up with stress. For example, I’m going into a public bathroom with, say, six stalls and someone’s in the disability stall. If they had waited thirty seconds for one of the five other stalls to open up, I wouldn’t have to wait five or ten minutes. But they’re choosing to prioritize their needs. Disabled people don’t exist in the minds of others, so my day consists of waiting longer than everyone else to use bathrooms, accessible transportation, and so on. Often trains and elevators are out of service. I can’t think about time.
AL: When you talk about your accident, you describe it as a catastrophic act of randomness, utterly nonsensical. In contrast, your art practice communicates about disability and illness in a practical and sensical way. I found that my own encounters with bodily fragility and my mortality, like when I learned I have a genetic mutation that predisposes me to cancer, caused my writing to take on a similar frankness. How do you reconcile the two?
EB: If people recognized their own mortality more, we would live in such a better world. It’s what Thich Nhat Hanh talks about. Our cognitive dissonance with our own bodies and mortality is a big problem, and we all behave in a way that makes life harder for ourselves and everyone else. When you’ve been faced with death multiple times, there’s urgency. I don’t get to dillydally. I don’t have time to come up with a word salad to justify the decisions that I’m making in my art—everything has a meaning and a purpose. The amount of information I’m trying to get across is more than I can ever put in an artist talk or an interview. A lot of people go about life thinking that they have time and energy to waste when it comes to relationships with other people. Near-death experiences often change people’s value systems, and they start reassessing the decisions they make.
I want the world to be a better place for everyone who lives in it, because even able-bodied people are stressed out and traumatized and hurting badly. So many lack resources to survive and are struggling hard to afford food, rent, and gas. Given that context for the able-bodied, how are disabled people going to be taken care of? How are we going to have communities of care in this very individualistic and narcissistic society? It’s not how things were in the past; Paleolithic human beings took care of their disabled people and were feeding and housing them even if they couldn’t work, because they knew that all life was precious.
Ramp, 2019, thermoformed PETG plastic, rivets, wood, and broken wheelchair, 82 × 42 × 86 inches. Images courtesy of the artist, unless otherwise note
Grabber, 2019, iron oxide on casted plaster, 35 × 5 × 1 inches.
Death by 7865 Paper Cuts, 2019, Xeroxed medical bills and life care plan from 2012–2015, 7,865 sheets of paper, 11 × 8.5 × 25 inches.
AL: People with disabilities are often criticized for being brusque or complaining. You’ve listed all these reasons for all of us to be angry at the world.
EB: Part of the exhibition at the Whitney Museum is Death by 7865 Paper Cuts, a three-and-a-half-foot-tall stack of my medical bills—7,865 pages. It’s only a fraction of my entire medical billing; it’s difficult to get your medical history in PDF form. That stack is part of the initial billing from Northwestern Hospital, right after my accident. It’s absolutely brutal. That piece shows how we live in an entirely fucked healthcare system. I need to use curse words to describe it, because there isn’t another accurate way . . . it’s just so messed up.
AL: Yeah, profanity is the only way.
EB: I can’t even believe we call ourselves a developed country. People say weird things like, “It’s worse in other countries.” Well, by whose definition? I’ve been to other countries. Have you seen Skid Row in downtown Los Angeles? The sidewalks and bridges?
I think this stack of bills does a good job of bringing across realities people don’t want to face. For instance, why should it cost me twenty dollars to pee in a hospital?
AL: Why does it cost twenty dollars?
EB: They charged twenty dollars for the set up of a catheter bag. Then it was probably fifty dollars for someone to help me use it. They wouldn’t even let me do it myself, even though I could. I had no agency in the hospital. There’s so much artwork I can make about this.
I’m disappointed with a lot of artwork that talks about disability or chronic illness because it fetishizes medical aesthetics and doesn’t get to the heart of the issues that people are facing. It seeks to commodify the shock of medical trauma and disability without doing anything important for disabled people.
The best art asks questions and interrogates belief systems. It confronts you with a reality that you haven’t considered, or with the artist’s consciousness. It can be very subtle, like with Félix González-Torres trying to communicate the loss of his partner and his community during the AIDS crisis. He used something as simple as the weight of candy as a metaphor for the dying of his beloved. It’s like when Goya became deaf and his work was impacted by his isolation and struggle with dealing with an ableist society.
My interest is to communicate lived reality or an awareness of something that happens in the world that affects all of us and that no one is separate from. I’m tired of bland abstractions that are disconnected from the lived reality we’re currently experiencing in late-stage capitalism with impending climate catastrophe. It’s insensitive if privileged artists just continue making work that isn’t critiquing these urgent concerns.
AL: The Whitney Biennial is this iconic show that’s supposed to represent American art now. Do you feel there’s something particularly American in your work?
EB: One of my pieces, not featured in the Biennial, is called Land of the Free. It’s a single medical bill for $506,000, which I got when I was nineteen. My insurance had already paid out my premium and said I owed Northwestern Hospital that sum in twenty-one days. I really need autoimmune disease treatment for my CRPS, and I’ve gone without it for many, many years because I can’t afford it. A lot of other countries have universal health care. I think it’s quite embarrassing and horrible that we don’t.
A lot of my works are about our built environment and our healt care systems in America and how oppressive they are for large groups of people. Disabled people are the largest minority, and we are not even seen. We’re an invisible minority because we can’t participate in the built environment. I don’t know if I’m the only artist with a disability in the Whitney Biennial, but I’m the only artist in it that’s explicitly making work about disability.
AL: There are so many kinds of disabilities. When I taught disability studies, a lot of the freshmen would come in thinking they had no connection to it whatsoever. I would say, “Even if you don’t have a disability, I guarantee that every single one of you knows someone who does but you just don’t conceive of them with that word, capital-D disabled. Someone you know had cancer; statistically, thirty percent of you in this room have some sort of mental illness; some of you have been temporarily disabled by an athletic injury; some of you are neurodivergent or have learning disabilities.” One of the common refrains in the field is that we all eventually become disabled. Our bodies fall apart, and the likelihood of getting through life without any injury, illness, or impairment, and then dying suddenly in your sleep is slim to none.
EB: Disability affects everyone at some point. Yet this doesn’t seem to mobilize anyone into making the material realities livable for those with the most needs. Often my visible disability seems to be an invitation for someone to tell me about the six months they spent with a broken leg or their ADD. But they refuse to understand the segregation wheelchair-users face in the built environment, or how our healthcare needs are often not met because of the costs. I’ve noticed that some people with invisible disabilities, rather than caring about visibly disabled people, often use disability to put themselves in the center of the discussion. They don’t see how the system affects those with more urgent needs. They don’t see disability or chronic illness as a call to arms for access, or to allyship and solidarity. Instead, it becomes a means for people to elevate themselves personally and commodify their experience. Capitalism incentivizes and profits off this kind of individualism and lack of effort to change anything.
AL: Well, I will give my students some credit. They often were like, “That’s interesting, because then I am by some definition disabled, but I don’t identify that way.” I’d see their brains turning it over and trying it on for size and I would ask, “Do you have ADHD that is disabling you from some form of participation in the world? There are spectrums of intensity, so ask yourself if your access to the world is limited. Does your anxiety impair your ability to interact with the world?” These are the questions I ask.
EB: It’s funny, using a wheelchair I would never be able to not identify as disabled. It’s not an identity thing, it’s a material reality for the people who are most disadvantaged by the way the world is built, by the health care system, and by the lack of caregiving. Disabled girls are seven times more likely to get sexually abused or assaulted than able-bodied women.
AL: Which is ironic because they’re often desexualized.
EB: I’m pretty active and sex is a basic need for me. People think wheelchair-users must be desperate. So many ugly dudes will put a hand on me trying to push my chair and ask for my number. If you think you have a chance just because I use a wheelchair, you are out of your fucking mind.
Rug, 2019, plastic IV tubing, copper electrical wire, doggie bag, head-phones, and shoelace on steel mesh, 60 × 42 × 8 inches.
AL: On that note, and because you just mentioned caretaking and caregiving, where does intimacy come into your work, if at all? I love Park McArthur’s piece Carried and Held, which lists all the people who have carried or held her body in the course of caregiving. The way loved ones and strangers exist alongside each other in that work is very moving to me.
EB: I’m a fairly emotional person, but I wouldn’t say intimacy plays into my work—although maybe vulnerability does. I’m not interested in interpersonal dynamics other than ableism and caregiving structures. My work is focused on systemic and structural issues caused by ableist ideology. I’m over living on a planet that’s built like this. I’m over people building new cafés and new restaurants where I can’t get in or use the restroom. I’m tired of not being able to use public transit. I’m tired of having abusive caregivers and being in abusive relationships to be able to afford rent and to receive the care that I need.
There’s no incentive within our economic system to help or care about others, nor do people even get the opportunity if they want to. Many people wish they had more time outside of their regular work to do the work that they actually care about. But even activists and organizers are restricted because they need to survive. It’s wild to me that any sort of systemic issue is automatically put on the individual as a personality problem. I can’t talk about my lived experience in an unemotional way without being perceived as complaining. For example, I have paralyzed ankles and a paralyzed left hip, but I can kick my legs. I did an ad for Instagram recently and because I’m only partially paralyzed, thousands of comments under the ad said “She’s faking it,” or “She doesn’t need a wheelchair, she just wants attention.”
AL: Despite being the largest marginalized community in the US, it’s difficult to create representation and advocacy for people with disabilities because there is so much variation in bodies and their needs, right?
EB: Yeah, it’s not a monolith. If you’re Black and disabled, you’re dealing with a different set of interconnected fucked-up things. You’re dealing with racism on top of disability. Economically oppressive systems affect all areas of our lives. You could uncheck all the diversity boxes, and our economic system and the austerity of health care would still be treacherous for everyone. Most people don’t want to talk about how it’s a bad, unfeasible system. Why are they defending capitalism when it is bound for entropy, as we’ve seen when consumers can no longer afford to live or buy anything? With inflation considered, today people are paid a lower minimum wage than during the Great Depression. To own a home costs more than seven times the amount it did during the Great Depression as well. We are frogs in slowly boiling water.
AL: Speaking of survival, could you tell me about your RV?
EB: I’ve been in the process of building out and remodeling an RV for two years. This project started with Covid, when I couldn’t live with roommates. Disabled people have to pay more in rent because we need a place with an elevator, or a bungalow where we can get into the front door without steps. Neither one of my parents’ homes are wheelchair accessible at all. After my accident, I couldn’t shower because the shower was upstairs.
I started building the RV knowing I would be facing homelessness again at some point. I couldn’t find anything wheelchair accessible without roommates that was under my Social Security income amount, which is $830 a month to live off of. With grants I was able to buy a cheap, used RV from the early 2000s. I redid the insulation with the help and love of my friends. I don’t think it’s a good solution for everyone, but I need things to be right and I’m fine with a small environment. Because of the layout and how everything is designed, being in my RV is so much more enjoyable than being in my apartment.
It solves all the design problems that I face in built domestic spaces. I’d like to have the opportunity to present the RV in a museum to show that an accessible custom-built environment is aesthetically superior to an inaccessible built environment. Every material choice and all aspects of the space are based on my constraints and capacity to fix the environment: for example, there’s a lift in the back so that I can get to the roof and access the electrical system. The design is very minimal and based on Scandinavian and Japanese interior spaces. It’s modular and multipurpose. When you’re looking at the space, there’s no indication that someone with a particular disability lives there. Our society thinks of accessibility as an afterthought. We have this idea that accessible spaces are ugly and rely on expensive devices or medical aesthetics. I’m trying to get rid of these design stigmas and barriers.
AL: Are there any other details in the RV that you feel particularly excited about for the way they change our current attitude about our built environment?
EB: I’m using a much smaller space than most people live in, and it’s much more functional than any apartment I’ve had. For instance, I designed a five by eight foot bathroom with multiple sliding doors. When you open them, the bathroom looks like a small built-in cabinet and the toilet looks like a bench. I’m using 270 square feet in a better way than 2,000-square-foot apartments.
I’m trying to come up with creative solutions that are affordable for disabled people. We can’t save money to buy a house, we aren’t allowed to work, we can’t get jobs. How and where are we supposed to live? How are we supposed to afford modifications for places we’re living in? I have friends who are disabled and got married and their partners bought houses and they’re remodeling the entire home. They have to spend so much money putting in ramps and other stuff and redoing the bathroom. And that’s only available to people who have some form of financial security. It’s not a possibility for most wheelchair-users.
Accessible RV, interior designed by the artist
Accessible RV, interior designed by the artist.
Accessible RV, interior designed by the artist.
AL: People don’t want to blame the system because if they do, then they feel helpless. If you have autonomy, then you can change your reality and not be miserable.
EB: Even if you criticize capitalism, you’re still responsible for surviving it.
AL: You’ve done collaborations with designers and some modeling, so I imagine that a lot of people see the ways that you adorn your body and assume you’re wealthy simply because the fashion world is elite.
EB: Dressing well doesn’t cost me money. I have friends who are designers and I get to borrow their clothes for events—like the incredible Hardeman pants I wore to my artist talk at the Whitney Museum. I have these knockoff Bottega Veneta boots that I got on Alibaba for thirty dollars. And this leftist online account was trying to deplatform me by saying that I was wearing $800 boots. People assume I’m fine because I wear thrifted clothes that look expensive. But in reality, my wheelchair-assistive devices cost thousands. I’ve been without medical treatment for my CRPS for a decade because it costs $50,000. Even if I got paid $600 for modeling runway for twelve hours, that’s literally two prescriptions for me or one wheelchair repair. I haven’t paid an almost $2,000 electric bill because I can’t. I have $78 in my account currently because of cab costs in New York City. I’m on food stamps. I’m not allowed to work or earn money without losing my health insurance and caregiver. Disabled people deserve to look nice and live with dignity even in policy-enforced poverty.
AL: This connects to what we talked about earlier regarding the desexualization of folks with disabilities, while simultaneously being financially disempowered by the rules around Social Security income. There’s cognitive dissonance in the ways your body gets used to diversify brands but can’t be seen as sexual. If you’re not seen as sexual, how could you be a model?
EB: I call it the “infantilization of disabled people.” Most of the fashion gigs I’ve been in, they’ve tried to put something on me that wouldn’t work with my wheelchair or wouldn’t work with me sitting. Or was completely infantilizing. People make so many judgments about me based on how I look. People stare at me regardless of what I wear because I use a wheelchair. I used to care about staying under the radar. Before my accident, I didn’t dress so crazy. But now people are looking at me all the time, so I’m going to wear whatever is fun for me, like these knockoff Louis Vuitton bags from Canal Street.
My experience is not unique. I’m one of ten million people who uses a wheelchair in the world, and every year, six hundred thousand Americans become bankrupt and lose their homes and their cars because of medical debt. I really want people to become more curious about questioning and interrogating the world that they live in. I’m not “special” and “inspiring” for simply trying to survive.
Ayden LeRoux is an artist, writer, critic, and educator from New England. Her photography, performance, video, and installations have been shown widely. Her writing has appeared or is forthcoming in Bookforum, Catapult, Electric Lit, Entropy, Guernica, Lit Hub, and Los Angeles Review of Books, among others.
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BOMB Magazine has been publishing conversations between artists of all disciplines since 1981. BOMB’s founders—New York City artists and writers—decided to publish dialogues that reflected the way practitioners spoke about their work among themselves. Today, BOMB is a nonprofit, multi-platform publishing house that creates, disseminates, and preserves artist-generated content from interviews to artists’ essays to new literature. BOMB includes a quarterly print magazine, a daily online publication, and a digital archive of its previously published content from 1981 onward.
Annually, BOMB serves 1.5 million online readers––44% of whom are under 30 years of age––through its free and searchable archive and BOMB Daily, a virtual hub where a diverse cohort of artists and writers explore the creative process within a community of their peers and mentors. BOMB's Oral History Project is dedicated to collecting, documenting, and preserving the stories of distinguished visual artists of the African Diaspora.
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