¶ 1 Leave a comment on paragraph 1 0 Welcome. Please read the instructions for reviewing before commenting. We ask contributors to be generous when thinking along with our pieces and to keep in mind that the final chapters are intended to be short essays. Visit matteringpress.org for more information on its other books. Readers might also want to have a look at this resource created by one of the book’s editors, Emily Yates-Doerr, which catalogues key Open Access anthropology publications.
¶ 3 Leave a comment on paragraph 3 0 The case that follows illustrates an ethnographic flashpoint in my work on disability. Here, I offer an account of a single morning during my first research trip in Central America. The day marked my only visit to a particularly well-known institution (or shelter) for children and adults with disabilities. The following summer, I would learn that the scenes depicted below were not necessarily representative of other shelters in the country.
¶ 4 Leave a comment on paragraph 4 0 Still, several years later, this particular case – this single morning – continues to shape my thinking on the making and unmaking of disability personhood in everyday life. I use it not to highlight the plight of an individual or probe the lived experience of disability in certain economic and sociopolitical contexts. Rather, I approach it as the first of several encounters that prompted me to examine my preconceptions of disability outliers – cases that originally struck me as so extreme they couldn’t possibly happen closer to home, back in the U.S. People kept in closets? Surely not. Children abandoned to live in nursing homes? Impossible. A suspicion that disability was contagious? Come on. Having spent my entire life immersed in the disability community, whether personally, as an ally, or through my research, I naively assumed that I knew better.
¶ 5 Leave a comment on paragraph 5 0 Yet I heard such stories again and again as I moved forward with my work on family experiences with rare and undiagnosed disabilities, those confusing puzzles of sensory, physical, and intellectual difference that do not correspond to a clear label – the bodies that fall outside of diagnostic common sense. The themes persisted long after I transitioned to fieldwork in the U.S. They weren’t discussed as openly, yet simmered below the surface in many of my ethnographic encounters.
¶ 6 Leave a comment on paragraph 6 0 I have continuously revisited this case as a cautionary reminder of the materiality of bodily difference and enclosure, and of an ethnographic caution about attributing exceptionalism to an encounter. Each case tells a story, and this one is no different. But the story of a single morning has continued to reverberate through multiple years of a single project, despite my efforts to leave it behind.
¶ 9 Leave a comment on paragraph 9 0 The Centro was a clumsily crowded institution housing people of all ages with disabilities. Locals spoke of the kindness and generosity of the Church-run facility, noting its constantly changing international cadre of mission groups and gap-year volunteers. After all, where else could the Centro’s abandoned disabled residents live and who would care for them otherwise? The building’s facade stood in typical colonial splendor, layers of sharply flowing lines doused in cheerful hues overlooking food vendors in the adjacent plaza. Anyone who has been to this well-traveled city has most likely passed by.
¶ 10 Leave a comment on paragraph 10 0 I met my local contact, V., a physical therapist based in the capital, outside of the facility. She worked there twice weekly through an innovative program developed by a well-connected national disability nonprofit (with significant international backing). The program brought experts from the capital city to other areas within a day’s travel that lacked specialized disability service providers. Her formal job was to provide basic therapies to a handful of the residents, but there was more to her work – the simple act of attention, sitting with a person and communicating with them however possible, whether using sign language, speech, gesture, or touch. In this space, where residents far outnumbered staff and volunteers, such encounters were a luxury.
¶ 11 Leave a comment on paragraph 11 0 Leading me through the maze of partially locked gates, V. narrated the space as we walked. Hundreds of people lived between these walls, hidden from the humming city life outside. The Centro’s residents appeared to have a dizzying array of disabilities, and according to V., many did not have a concrete diagnosis – an under-examined, yet quite common, occurrence in global disability. I saw wheelchairs, straightjackets, the whole bit. The children’s quarters stretched around a standard open-air courtyard, a deceptively beautiful by-product of the architecture. There were flowers, grass, and a small jungle gym. A swing designed for kids in wheelchairs sat vacant and a collection of multicolored beach balls rested under a small tree.
¶ 12 Leave a comment on paragraph 12 0 V. and I stopped to greet clients as we walked, shaking hands and patting arms along the way. Almost all were in wheelchairs. She said this was a requirement for residents, including those without mobility challenges. We walked toward a structure the size of a walk-in closet, a small wooden shed in yet another courtyard. My companion knocked. Tok. Tok. Tok. Without waiting for a response, she opened the door. A woman in her early-twenties was curled on a wooden plank bed lined with a foam mattress. I will call her Maria. She had cropped black hair that stood straight up. V. had told me that she was blind, presumably since birth. I believe her eyes were closed when we arrived.
¶ 13 Leave a comment on paragraph 13 0 Maria had lived at the Centro since she was 15. She had quite a reputation and was widely feared by staff. She was said to be uncontrollable, unhinged, and full of rage. She was violent, I was told, and took her wrath out quite physically on anyone who dared to come too close, especially when she was younger. Having heard all of this, I struggled to make sense of her small frame resting silently in this darkened closet. V. told me that Maria spent most of her days in this position.
¶ 14 Leave a comment on paragraph 14 0 Maria’s room had no windows, but light slipped in through the uneven cracks where the rough wooden walls reached up toward the flat ceiling. The heat wasn’t as oppressive as I expected. I noticed a small latch on the outside of the door. With force, Maria could have pushed her way out. The room was almost empty. A single light bulb hung from the ceiling and the bed sat next to a toilet with no lid or seat
¶ 15 Leave a comment on paragraph 15 0 V. first met Maria the previous year, and had visited her weekly ever since, following her brief therapy sessions in the children’s wing. Her other clients were primarily young kids with multiple disabilities – mostly combined sensory, intellectual, and physical impairments – but Maria was different. First, she was a young adult. Second, she lacked the diagnostic ambiguity of V’s other patients. On paper, Maria sounded misleadingly clear cut: she was blind. As with the other Centro residents, however, Maria’s impairment was enmeshed in a personal history of neglect and isolation that could not be separated from her lived experience with disability. Blindness, as a diagnosis, flattened her everyday. Maria’s disability had become inextricably linked to life in the closet, rumors (or truths) about aggressive behaviors, and an inability to communicate verbally.
¶ 16 Leave a comment on paragraph 16 0 As V. had learned from the staff at the Centro, Maria had been abandoned by her parents as a small child. She somehow made her way from town to town, and ended up in the main market of a small city. From there, she was sent to the Centro, where she had lived since she was around five. I had heard similar stories elsewhere – the disabled child found in a market stall or public bathroom. V. hadn’t heard Maria speak and she didn’t utter a sound during our visit that day. V. had been told she spoke a Mayan language when she arrived at the Centro as a girl, but never learned to speak Spanish. Again, I do not know. With us, she communicated through gesture, bodily movements, and facial expression. And, yet, I could see that she listened to every word we said.
¶ 17 Leave a comment on paragraph 17 0 After sitting in her room for a while, Maria stood up. She and I walked outside, slowly making our way across the courtyard. V. trailed behind. The nurses stared openly. When V. started to visit Maria, Centro staff uniformly warned her to be careful. “She’ll hurt you,” they said. “She’s like an animal, biting and clawing.” Behaviors were individualized as nameless and decontextualized, yet fixed. Maria was just like that, the logic held, and we were all to be careful.
¶ 18 Leave a comment on paragraph 18 0 I sat with Maria on the concrete patio. The sun snuck out from rainy season clouds for a few moments. I recall Maria breathing slowly, in and out, always silent. I did the same, not wanting to make additional noise. One of her hands rested softly on my arm, physically keeping tabs on my presence in the space.
¶ 19 Leave a comment on paragraph 19 0 I met a man several weeks after this visit, a physical therapy student who interned previously at the Centro. He immediately asked if I’d met Maria. He snickered as he spoke, recalling the stories of the notoriously wild and uncontrollable patient – this grown man with children of his own. He told me that everyone was afraid of Maria, that she was capable of anything. I asked if he’d ever seen one of her rumored explosions. He said no.
¶ 20 Leave a comment on paragraph 20 0 Maria and I moved to the grass as she relished the rare moments of sunlight. When she was ready, she stood to return to her room. V. and I accompanied her, and we sat on her bed. Maria lowered herself down onto one side, curling into the same position in which I sometimes sleep. V. took out her cell phone and began to play music. I recognized the song instantly, a South American band with soft compositions full of emotion and weight, lots of lost loves and what if’s. The singer pondered the smells that linger once someone departs – of perfume, cigarette smoke, coffee breath, skin. Maria rested motionless, just breathing slowly and rhythmically with the music.
¶ 21 Leave a comment on paragraph 21 0 The three of us stayed like this for five minutes, maybe more, sitting there in stillness as the songs wrapped themselves around the small, dark space. Maria’s open door caught any breeze it could find and the air shifted slightly. Maria rested her head on my companion’s lap and her hand on my arm. After a few songs, she shifted her weight away from us, creeping closer to the edge of her bed to signal that she was ready to be alone. V. asked softly if she wanted us to leave, telling me that Maria’s lack of acknowledgment indicated that it was time. We stood and walked slowly from the space.
¶ 22 Leave a comment on paragraph 22 0 “This is always the most difficult part,” V. said to me, looking down. I watched as she slowly closed and latched the door, and we left Maria inside of her closet.
¶ 26 Leave a comment on paragraph 26 0 While it was only a single morning in a multi-year project, my encounter with Maria continues to loom large in my thinking. In my work in Latin America and later in the U.S., including extensive digital ethnography, such outlying or seemingly extreme cases edged closer and closer to the center of my analysis.
¶ 27 Leave a comment on paragraph 27 0 The similarities between this case and my subsequent work in the U.S. were uncanny, most visibly in the convergence of spatial isolation in the crafting of difference in personhood. I returned to these themes repeatedly during later iterations of my fieldwork in Texas, which houses more citizens in large state institutions than any other state, despite a 1999 Supreme Court ruling in favor of community-supported living for people with disabilities. Texas is currently the only state with an institutionalized population higher than 3,000 and it consistently ranks as having the some of the worst disability services in the country. The situation has grown so dire, including widespread reports of abuse and neglect, that the state was required by the Department of Justice in 2009 to monitor compliance violations. If the state was going to resist federal pressure to close institutions, at the very least it had to improve the treatment of people living inside.
¶ 28 Leave a comment on paragraph 28 0 And yet local (and typically left-leaning) news outlets staunchly protested the proposed closure last year of one local institution, even in the wake of years of well-known problems with the facility. The logic was familiar: “Where else will these people go? Who will care for them?” The media coverage curiously left out any significant discussion of legal precedent, the ongoing federal involvement, the Americans with Disabilities Act, or the simple fact that many other states had already phased out institutions in favor of community-based alternatives. I recalled my morning with Maria as I struggled to make sense of these renewed calls in favor of disability segregation. I began to think about disability through the lens of Elizabeth Povinelli’s (2011) writings on the ordinariness of abandonment and isolation, and Kathleen Stewart’s (2010) work on worlding and the everyday. Abandonment not as a jolt, but as the nagging hum of that single bulb in a darkened room, the murmurs of others told to keep away, or the lulling song we played from V.’s cell phone on the day of our visit.
¶ 29 Leave a comment on paragraph 29 0 I now approach disability segregation as an ongoing process of bodies and moments, an everyday experience of life in the closet. The slow burn of almost but not quite forgetting a woman made to live apart, and a collective public denial that such cases are not necessarily extreme or, if they are, might somehow be justified. Here, isolation becomes a work in progress, always unfinished, available to the ethnographic lens in snapshots. It is both a process and an act, highlighting disability worlds that are both singular and widely shared, frozen in scenes yet necessarily ongoing.
¶ 30 Leave a comment on paragraph 30 0 Elizabeth Lewis, PhD is an applied medical anthropologist based at the Texas Center for Disability Studies in Austin, Texas. Her research examines the social life of complex disability diagnoses, and she is engaged in multiple applied disability projects on health and family experiences in the United States. Additional information on her work, research, and writing is available at lizlewisphd.com.
¶ 34 Leave a comment on paragraph 34 0 _____, 2010. “Afterword: Worlding Refrains.” In The Affect Theory Reader, edited by Melissa Gregg and Gregory J. Seigworth, pp. 339-354. Durham: Duke University Press.