Designing for Disability Justice: On the need to take a variety of human bodies into account

Disability ought to be an exciting subject for architects: it’s about lived experience, problem solving, and designing a better built environment. While the topic engages with critical theory and aspirations for collective life, it’s often seen as a field that requires checking boxes and fulfilling requirements, or worse, a touchy subject strewn with outdated terms and outmoded habits of thought. The typical routines of design don’t always take the variety of human bodies into account. But I recently had the chance to talk to four practitioners who are changing minds and moving the field forward: Aimi Hamraie is associate professor of Medicine, Health, and Society and American Studies at Vanderbilt University; Sara Hendren (MDes ’13) is a professor at Olin College and the author of What Can a Body Do?; Sierra Bainbridge is senior principal and managing director at MASS Design Group; and Jeffrey Mansfield (MArch ’14) is a design director at MASS.

In our interview, Hamraie says that engaging the design disciplines with the subject of disability requires epistemic activism. “When disability activists entered the profession of architecture, they showed that architects do not just design buildings, they also design curricula, licensing requirements, research, and fields of discourse that give meaning to their work. To shift the treatment of disability in architecture required intervening in all these ways, in addition to lobbying Congress to pass the Americans With Disabilities Act.” This sort of epistemic activism is occurring at the GSD. In the fall, Bainbridge taught “Seeking Abundance,” a studio which aimed to reframe the topic of disability as a source of diversity and potential. The studio relied on the expertise of Mansfield , who recently received an award from the Ford and Mellon foundations for his research into schools for the Deaf.

While discussing how architects ought to think about disability, Mansfield, Bainbridge, Hamraie, and Hendren highlighted many examples that provide rich food for thought. Hendren points to De Hogeweyk, a “dementia village” in Weesp, the Netherlands. “It proceeded from the board of directors at a nursing home for memory care asking itself a simple but crucial question: Would the status quo for memory care be a kind of environment we’d want to live in, were we to acquire this condition? They created a list of values for promoting the kind of life they wanted for their residents, and their value of ‘favorable surroundings’ resulted in a cityscape structure for the redesigned site: a locked facility with streets and storefronts, a plaza, theater, grocery store—even bikes inside! And best of all: a restaurant that’s both publicly accessible to the town and internally, securely accessible to residents,” she says. “There’s an understanding among staff and customers that some of the residents will wander in from time to time, creating some unusual interactions. But the semi-porous structure is ingenious, lightening the barrier between public and private.” It sounds like a dream project for architects: reimagining public and private space while grappling with the nature of memory and human social interactions.

Meanwhile, Hamraie mentions several notable figures: Jen White Johnson, who does graphic design work centered on #BlackDisabledLivesMatter and “Autistic Joy,” and Corbett O’Toole, a queer disabled elder and author of Fading Scars: My Queer Disability History. Hamraie says, “O’Toole has been a lifelong designer and pushed me in so many amazing directions when I first started to think about crip technoscience and DIY disability design. She recently retrofitted a school bus as an accessible space for living and traveling, and it is beautiful.” Hamraie cites precedents in theory as well: “The person whose work I always come back to is the feminist science scholar and activist Michelle Murphy, who writes about built spaces and vernacular designed objects in the context of eugenic, colonial, and imperialist projects.” Hamraie suggested two books by Murphy to start with: Sick Building Syndrome and the Problem of Uncertainty and The Economization of Life.

No doubt the greatest wealth of insight comes from the disability community itself. While a student at the GSD, Mansfield, who has been deaf since birth, initiated historical research into the design activism that occurred at schools for the Deaf in the United States. This has now become a multi-year research project exploring how Deaf schools became a node of design activism. His historical recap is illuminating: “Deaf spaces were typically designed by state agencies under the idea of benevolence. These schools were built with significant state investment, and they were built as symbols of societal virtue. They were not really designed for their deaf users—their sensorial needs are not accommodated by the spaces. It doesn’t help that they were built far from home communities.” But this segregation had an unintended side effect: “Clustering together deaf people at these schools allowed them to develop their own culture, their own awareness, their own value system. When it came time to assimilate back into society, it felt like a deprivation of this culture. Self-determination became a form of resistance.” Mansfield emphasizes how working within this framework can be a productive challenge for designers: “How can we identify unique forms of sensory knowledge, amplify them, and support these various experiences to allow communities to decide for themselves how they relate to the world?”

I think the biggest barrier, of course, is the limited imagination that standards tend to create. Because it’s a checklist and a liability matter, the rhetorical framing of disability gets subsumed under that logic: a cloud over the excitement of a project, or a ‘don’t forget’ matter of inclusion.

Sara Hendrenon the barriers of standardization within the subject of disability in design

DeafSpace is one example of how a form of sensory knowledge has been systematized into concepts that are useful for designers—e.g., paying attention to lighting and color to reduce eye fatigue. Mansfield explains that “DeafSpace emerges from a set of Deaf-centric spatial considerations that are uniquely inherent to how deaf people navigate and claim space.” Hendren develops this concept in her book. “Problem-solving is a pattern of attention that gets pretty rote and rigid in design education, especially when it comes to matters like disability. DeafSpace is not a program for ‘inclusion’ in the flattened sense of ‘making room’ for deafness. Instead, DeafSpace is built on a very close observation of behaviors that are already happening among deaf folks: linguistic and social behaviors, spatial relationships, visual fields, and the way sound functions somatically, not just aurally,” she says. “All of these are evidence of the magnificently adaptive human being, doing its thing minute by minute. It’s a wonder just as it is! So architecture might proceed more like DeafSpace does—paying attention to and drawing up an envelope that formalizes the assets of a given population and its uses of space, and then, yes, adding the challenges and problems to that mix when they’re identified by that population itself. It’s a many-dimensional idea of human agency, which ‘inclusion’ doesn’t usually encompass.”

One reason that disability has not been more thoroughly integrated into design education is that it is not usually formulated as an exciting challenge. The need to adhere to standards and “check boxes” can instill a sense of somber rectitude that stifles creative thinking about how to provide meaningful access. Hendren gives an example: “A bathroom with a threshold at the right width measurement for a wheelchair user to get through, but not to turn around once inside; or no handles for transferring.” But mistakes and misapplications are not the most significant problem, Hendren says. “I think the biggest barrier, of course, is the limited imagination that standards tend to create. Because it’s a checklist and a liability matter, the rhetorical framing of disability gets subsumed under that logic: a cloud over the excitement of a project, or a ‘don’t forget’ matter of inclusion.”

Standards should not be dismissed, however. Hendren emphasizes that “standards are useful as a benchmark, and for creating legally actionable codes for compliance (that is, when they are in fact actionable, and not just recommendations!). I think the International Symbol of Access is a terrific example of standardization. It’s an isotype that creates an instantly recognizable sign that accessible architecture like ramps or automatic doors are close by. It can also function as a symbol that does something pretty profound: protecting parking spaces or seating for folks who need proximity to a building or a bathroom or a fire exit. Knowing what you can expect and knowing it’ll be the same internationally, recognizable at a distance and without relying on text of any kind—that’s what you want in a solid standard.” Even so, ubiquitous standards are not set in stone. Hendren co-founded the Accessible Icon project with Brian Glenney, a philosopher and graffiti artist, to update the accessibility icon in a way that, to me, hints at the thrill of racing around in a wheelchair.

The alternative to rote standardization is design—or, as Hamraie puts it, “the initiation of critical processes toward iterative world-building.” This is something architects are trained to do: questioning the assumptions that frame a project. “From my perspective, accessibility is an open-ended project because what we know or claim to know about who uses accessible design is always changing. Sixty years ago, it was barely thinkable to design with wheelchair users in mind, let alone people with chemical sensitivities or mental disabilities. The shifting landscape of legibility for disabled people always yields new approaches to design,” Hamraie says. “I would say that my work intervenes in these processes of knowing and making. This is a strategy that builds on my training in the tradition of feminist new materialism—which is concerned with the relationship between knowing, making, and ethical acting—and also the field of discourse around critical design. These help me understand that standards can be material and critical; they do not always have to be reductive.”

Bainbridge’s studio at the GSD also takes aim at reductivism. She notes: “We have been taught in the last 30 or 40 years to rely heavily on ecology and science-based research, which sometimes misses the point. It is important to understand that landscape architects design for unique cultural communities. Different communities have different relationships to the vegetal world; how do we uncover what those are?” She also asks, “How do we understand and create a sensory interface that is specific to the community we’re working with, rather than defaulting to something that is either aesthetic or ecological? Designers should be accounting for all of our sensory experiences, and yet we usually design quite visually. By designing for people with different abilities, we can understand how to design for all abilities, which creates a more abundant experience for everyone.”

What this means, first of all, is that Bainbridge’s students conduct a lot of research. When I ask her about the many pre-design phases in her course description, Bainbridge smiles and says, “Students asked: is this how we actually design? Do we come to a project and have a conversation with our partners without having a set idea about what the project actually is? ‘Seeking Abundance’ is reflective of how MASS works as a nonprofit organization. We start way upstream from where a typical architect would start. We seek out partners and amplify their mission. Often this means we’re working with partners who have not had access to design services and don’t have a budget yet. If we come to projects early, we can help understand what the mission of the project is and how something built would support their work.”

Because studios have been taught remotely to students located around the world, Bainbridge encouraged her students to seek out partners near where they were located. They came up with an eclectic list: “Perkins School for the Blind, a very well attended Deaf gathering space in Wuhan, China, more marginalized communities like the Abenaki in New Hampshire, and many others. Students talk with members of these communities to uncover aspects of their spatial sensory awarenesses. This engagement helps create a common language around sense between the students and their ‘clients.’” Adding depth to this investigation, students were asked to set up specific situations for their classmates to experience. “Each student is creating an experience with one aspect of sensory intake that they are inviting others to. Having them experience the world through that sense in that particular way has created an expanded vocabulary for design in the studio. Now the question is, how can it create a more abundant palette for creating landscapes?”

It is worth reflecting further on why the usual methods of design do not address the variety of human bodies. As a historian, Hamraie notes that “during the period in which the design disciplines have been professionalized, there have not been many efforts to enable disabled people to become designers or—until recently—to recognize disabled people as designers and inventors even when they have not had professional training. This is likely because of long histories of centering idealized bodies in disciplines such as architecture, and of more recent histories of measuring and standardizing bodies in fields such as industrial design.” Mansfield echoes Hamraie’s observations, commenting that “There have, of course, been many attempts to change this, starting in the 1970s with interventions in design curricula and professional licensing. But ableism is entrenched and takes more than a class or a continuing education credit to uproot.”

MASS has come to specialize in projects at the intersection of multiple complicating factors, disability included. They have been commissioned to design a symbolic Black Deaf space and memorial at Gallaudet University, which is the only university that is designed to be barrier-free for deaf and hard of hearing students. It will honor Louise B. Miller, the mother of a Black Deaf child who sued the Washington, DC, Board of Education in 1952. Her son could not attend the Kendall School for the Deaf at the time because Washington was segregated. Miller sued, and she won her case at the Supreme Court. Although the suit did not successfully desegregate the school itself, it represented an early blow to the Plessy v. Ferguson principle of “separate but equal” by ruling that the school district could not deny its Black Deaf students the right to free public education. As a result, the Kendall Division II School was created—a segregated school for Deaf children at Gallaudet University.

Despite its part in the larger fight against segregation, this story has been largely overlooked on campus, which propelled student and community activists to demand a memorial that could convey the significance of this historical moment and “honor the Black Deaf community’s fight for educational justice in America.” The parameters of the project have made for a productive challenge, Mansfield says. “If you look at the architecture of Gallaudet—the Olmsted landscape and the high Victorian neo-Gothic architecture—it’s very symbolic of this idea of abundance, in terms of public investment and grandiosity, which really stands in contrast with the hastily built utilitarian architecture of the Division II School, which was eventually demolished. The memorial will be on a challenging site, but it represents a unique opportunity to remap the cultural landscape of the university.” The hope is that the memorial will lead to racial reckoning and healing—an active, collaborative process that would have never happened if Black Deaf people did not demand it.

The long-term goal of cultivating a critical mass of designers—a design community—that maintains a shared interest in disability can begin as simply as listening to the same podcasts. Hamraie has been doing disability justice organizing for 10 years alongside work as a scholar. “It began with my participation in the Occupy movement. Since then, I have been very embedded in disability culture and community. My podcast, called Contra*, addresses design from a disability culture framework, which means that it highlights the knowledge and practices of disabled designers, artists, researchers, curators, and activists working toward a more accessible world. But it is not ‘Disability 101.’ You can think of it as a window onto a community that does not actually try to do translation work to bring others into that community so much as it notes its existence, without euphemism or apology.” Hamraie continues, “This work builds on many activist and scholarly podcasts I admire—Alice Wong’s Disability Visibility, Cathy Hannabach’s Imagine Otherwise, adrienne maree brown and Autumn Brown’s How to Survive the End of the World, and others. Podcasts have a way of building communities through their audience, and so I have been interested in them as sites of intervention. There are new ones being created every day, which expands our community and the conversations we can have.”

As a profession, architecture can do more to include designers with varying abilities in its ranks. Hendren says that she “would certainly like to see more kinds of expertise encouraged—more illuminated pathways for young people to get into architecture. Not just young folks who are interested in parts-and-systems, like engineering, and then want to do something vaguely aesthetic with that technical expertise. Some of the best designers are, at heart, generalists—by which I mean voraciously curious, wide readers, drawing from an interest in people and interactions and patterns of sociality, a commitment to public and civic spaces as a form of shared life.”

Hendren is cautiously optimistic about the future: “I’ve been heartened to see the emphasis on maintenance and care get more formalized design attention in recent years. It’s a matter of attention: drawing up and formalizing some of the labor, artifacts, and interactions that are already happening and using a rhetorical spotlight to say: ‘Look over here! This counts too!’ ‘This Counts Too’ is actually the title of an essay I wrote with an anthropologist colleague, Caitrin Lynch, on a digital archive of low-tech prosthetics called Engineering At Home. That’s a design project in that same spirit: drawing a frame around design that’s not usually recognized as such.” Hamraie emphasizes that “interventions can take place in all sorts of sites—the political process and in public spaces, but also in institutional spaces where knowledge is created and disseminated.” The global pandemic and the shift to remote learning may be just the right impetus for the GSD to bring underserved users and communities more systematically into design processes. Everyone is relying on technological augmentation; everyone is “remote” from centers of power. Let’s not miss this opportunity to continue asking ourselves how the design disciplines can be made more inclusive.

1. The National Disability Authority offers a helpful list of appropriate terms.