In 2005, Robert Adams and his young daughter were both diagnosed with facioscapulohumeral dystrophy, or FSHD, which causes muscle weakness and wasting in the upper arms, shoulders, and face. In his daughter’s case, the early-onset condition affected her body in profound ways; and she now uses a power wheelchair. Adams’ FSHD was “not as robust,” he says, “but it’s a neuromuscular disease where it progresses, plateaus, and progresses. It never gets ‘better;’ in a medical sense, but I can’t imagine life without disability.”
For Adams, now an associate professor of architecture at Taubman College and director of the University of Michigan Initiative on Disability Studies, his and his daughter’s diagnoses would change how he experienced and thought about the built environment — leading him to organize his teaching and practice around the question of how to make urban and architectural spaces what he calls “radically inclusive.” It’s an idea that goes beyond mere accessibility, Adams explains, to whether people with disability feel welcome in our cities and buildings.
“I identify as disabled,” Adams says, stressing the politics of the word. “Disability is something that really animates my teaching, creative projects, and research. Like many architects, I’m interested in fabrication, computation, and complex geometries, but I’m also interested in the politics of space, who gets to participate, and who’s excluded.”
Abled people often experience spaces in very different ways, Adams says, offering as a case study the experience of seeing performing arts with his family. “Whenever we go to the theater there’s always this ritual of arriving, where people gather in the lobby to meet and socialize,” Adams says. “But we found right away that the protocol for disabled persons, especially somebody who’s visibly disabled in a wheelchair, is a staff member immediately sees that person, intercepts them in that social space, and then escorts them to the wheelchair seating.”
That can be dehumanizing, Adams says, not only because the disabled person is forced out on socializing, but because in many theaters the only accessible pathway to the main auditorium is through a route otherwise used for objects, not people. “So for us to get into the theater, you have to go through the alleyway, through the loading dock, past the dumpsters, through the back of house, through a freight elevator, and then eventually you get into the performance space,” he explains. “That just happened so many times, and I got infuriated and frustrated.”
Fury and frustration are not the most productive emotions, Adams admits. But Tobin Siebers, a longtime professor of English and a renowned disability studies scholar at U-M, changed his perspective.
“He got interested in the design work I was doing,” Adams says, “and I got really interested in the theoretical work that he was doing around disability aesthetics. He said, ‘Instead of being angry about your disability, why don’t you try to understand it as a form of creative practice?’ And that simple repositioning just flipped a switch in my mind.”
Adams credits Tobin, who died in 2015, with inspiring him to “use disability to hack architecture, to open up new channels in my own mind about how I think cities and architecture could be more inclusive of disability.”
That extends not only to how people who use wheelchairs are treated in public spaces but also how less obvious disabilities, including chronic fatigue and mental health conditions, can be aggravated or mitigated by design choices. Some of Adams’ current and recent projects have focused on student mental health and workplace stress, as well as the stress that can come with seeking healthcare. He and his partner, Taubman College lecturer Dawn Gilpin, are using LIDAR, a type of three-dimensional scanning, to map clinical spaces. “Going to the hospital is super-stressful, and that stress exacerbates negative health outcomes,” Adams says, explaining that the data, in conjunction with interviews with patients and providers, should help inform ways to improve these environments’ impact on mental health.
Adams, who teaches design studios as well as disability studies seminars, also works to center the politics of disability in the classroom so the next generation of architects, designers, and planners will be more likely to consider that “our intersectional identities demand a more intersectional architecture.” An important first step, he says, is realizing how ingrained ableism is even in the language we use to discuss disability — the phrase “seeing the world through the eyes” of a disabled person, for example, presumes that that person is sighted.
At heart, the message Adams hopes to impart — not only to his students but throughout architecture, urban planning, and related fields—is a simple one.
“I want people who are abled to be talking with and encountering disabled people,” Adams says. “Disability, like many allied minoritized groups, has a lot to offer in society, and coming together and talking is a really healthy activity. The more we have these conversations, the more we’ll come to understand each other.”