When thinking about care, it is easy to assume an asymmetrical structure with two fixed two roles: the care-giver and the cared-for. It is likewise easy to assume that the former is active while the latter is passive (cf. Borneman 1997). In attending to the lives and worlds of Ugandans with cognitive disabilities, however, I learned that there is more to care than this. In Uganda, Christian institutions are major providers of care and advocacy for people with cognitive disabilities. On first glance, it would seem as if the asymmetrical structure defines care in these settings. It seems clear who the teachers, therapists, and other staff members are (the non-disabled), and who the students and residents are (the disabled). Underlining this distinction, all of these institutions rely on idioms of kinship: staff members and volunteers are called “Uncle” or “Auntie,” while disabled students and residents are referred to as “children” regardless of biological age.
Yet in lives that unfold in relation to disability over the long term (see Whyte, this collection), something else may take place, something that troubles tidy distinctions between active caregiver and passive cared-for. A story will make this clear.
It is just after 7 a.m. at Hope Centre, a “special needs” school run by born-again Christians (balokole). The sun is burning off the night’s fog in the school’s sleepy neighborhood. Robinah, in her early thirties, arrives by motorcycle taxi (boda boda) to start her work for the day. A Catholic who works for a born-again organization, Robinah first says a brief prayer, gripping the amulet of the Virgin Mary around her neck, and then puts on her apron and unlocks the storage shed. With an exacting concern for parallel lines and dust-free surfaces, Robinah begins arranging mats for the children who arrive from 8 a.m. onward. Robinah is a Jill-of-all-trades. As the day unfolds, she will do many things: disinfect the therapy mats, walk mothers through physiotherapy techniques, comfort crying children, bathe them, feed those who cannot feed themselves. Robinah finishes around 4 p.m., exhausted and sweaty, as she folds up the mats and puts them away for the next day. “I’m exhausted!” (Nkooye!), she invariably exclaims, wiping her face with a well-used handkerchief.
Robinah is known as Musawo Robinah at Hope Centre. Musawo is a Luganda honorific used for all medical professionals, regardless of whether they are biomedical or “traditional.” Robinah has been coming to Hope Centre since she was twenty-one, and she is known to have some form of cognitive impairment. She engages in basic conversation in both Luganda and English but is not given to extended discussions. When Robinah started coming to Hope Centre, she was an indifferent student of vocational education, unwilling to engage in tasks like weaving without constant prodding from teachers. Staff members did, however, notice that Robinah took a keen interest in children—playing with them, carrying them, interacting with them. As the years went on, Robinah was gradually given more and more caregiving responsibilities, and today she is a staff member at Hope Centre.
Robinah’s is a case of what I call care in the middle voice. I use this grammatical metaphor to name practices and experiences of care defined by a kind of “transitivity… in which the distinction between subject and object is obliterated” (White 2010, 261). It bears emphasizing that care in the middle voice is not simply care turned intransitive. Differences between caregiver and cared-for remain, but they are not fixed positions and instead vary in situationally specific ways. Thinking about care in the middle voice draws attention to relationships where seemingly clear and invariant lines between care’s subjects and its objects break down. From the outside, at least, all of the students at places like Hope Centre appear to fall soundly in the camp of the cared-for, as people with disabilities who depend on others in at times quite dramatic ways. As they go about their daily lives, however, these individuals are drawn into nested webs where they give as well as receive care. Robinah’s is only a particularly vivid illustration of this fact (see Zoanni 2018, 67-71).
I noticed these dynamics of care in the middle voice in my fieldwork, and that, in turn, led me to notice that others have noticed similar things. Botswana provides a particularly rich ethnographic archive of ways that elderly women, the dying, and cancer patients provide care “for and by” each other (Ingstad et al. 1992; Klaits 2010, ch. 5; Livingston 2012, 113-17). Part of what these ethnographies consider corresponds to situations where resources are scarce and caring professionals few, thus forcing “patients” to become “agents” of each other’s care. Yet there is also something quite general, and perhaps generally human, about people’s efforts to care as they are being cared for, including in relatively resource-rich contexts. Speaking of a North American setting, for example, Janelle Taylor (2008, 328)notes moments when her mother, who has dementia, takes the initiative in trying to provide care, even while requiring ever-deepening levels of care herself.
Robinah’s story reminds us that care can and does outstrip a straightforwardly asymmetrical structure. Attending to cases of care in the middle voice has implications for disability studies and activism, since it helps work against pervasive assumptions that reduce disabled lives and worlds to the category of the “cared-for.” But it has wider implications too, underscoring ethnography’s ability to challenge social expectations about who gives and who receives care in any circumstance.
Borneman, John. 1997. “Caring and Being Cared for: Displacing Marriage, Kinship, Gender and Sexuality.”International Social Science Journal49 (154): 573–84. https://doi.org/10.1111/j.1468-2451.1997.tb00046.x
Ingstad, Benedicte, Frank Bruun, Edwin Sandberg, and Sheila Tlou. 1992. “Care for the Elderly, Care by the Elderly: The Role of Elderly Women in a Changing Tswana Society.” Journal of Cross-Cultural Gerontology 7 (4): 379–98. https://doi.org/10.1007/BF01848700
Frederick, Klaits. 2010. Death in a Church of Life. Berkeley: University of California Press.
Livingston, Julie. 2012. Improvising Medicine: An African Oncology Ward in an Emerging Cancer Epidemic. Durham: Duke University Press.
Taylor, Janelle S. 2008. “On Recognition, Caring, and Dementia.” Medical Anthropology Quarterly22 (4): 313–35. https://doi.org/10.1111/j.1548-1387.2008.00036.x
White, Hayden. 2010. “Writing the Middle Voice.” In The Fiction of Narrative: Essays on History, Literature, and Theory, 1957-2007, 255–62. Baltimore: Johns Hopkins University Press.
Whyte, Susan Reynolds. 2019. Lifetimes. Somatosphere. http://somatosphere.net/2019/01/lifetimes.html (accessed February 3, 2019).
Zoanni, Tyler. 2018. “The Possibilities of Failure: Personhood and Cognitive Disability in Urban Uganda.” The Cambridge Journal of Anthropology36 (1): 61–79. https://doi.org/10.3167/cja.2018.360105
Tyler Zoanni is a PhD candidate in the Department of Anthropology at New York University. His dissertation explores the lives and worlds of people with cognitive disabilities in Uganda, where Christian institutions are central to disability care and advocacy. Tyler also recently guest-edited a special issue of the Cambridge Journal of Anthropology on the anthropology of cognitive disability.
“Disability from the South: Toward a Lexicon” is a series edited by Michele Friedner and Tyler Zoanni. Contributors in this series consider what changes in theorizations of disability when research is located in places marked “Southern” and offer reconfigurations of keywords and concepts typically utilized in the study of disability.