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Constitutive inclusions

Rethinking disability and institutions from Uganda
Inclusions constituantes. Repenser le handicap et les institutions en Ouganda
Tyler Zoanni
p. 87-103

Résumés

Cet article remet en question les critiques conventionnelles des institutions dans le cadre des études sur le handicap et de l’activisme en s’appuyant sur un travail de terrain dans un foyer catholique et une école pentecôtiste pour les personnes ayant une déficience intellectuelle en Ouganda. Plutôt que de considérer les espaces institutionnels de ces organisations chrétiennes comme des exclusions ségrégatives de la vie sociale au sens large, cet article aborde le travail de ces institutions en termes d’inclusion – des inclusions constitutives, en référence à la manière dont ces organisations pennent en charge non seulement l’existence de base, mais aussi la personnalité de leurs résidents et de leurs étudiants. En retour, une telle analyse permet de repenser les conceptions conventionnelles des institutions dans les pays du Nord ainsi que les distinctions entre les institutions totales et les institutions sociales.

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Notes de l’auteur

Acknowledgments

I owe thanks to the European Society for Disability Research for the 2022 Young Author Prize for this article. For comments and insights on various versions of the text, my gratitude extends to audiences in Berlin, Brussels, and Leipzig, Sandra Calkins, Faye Ginsburg, Eva Feder Kittay, China Scherz, Bambi Schieffelin, Jean-François Trani, Isabelle Ville, Susan Reynolds Whyte, Angela Zito, two anonymous reviewers, and the patient editorial board of Alter. My first debt is to the people with whom I conducted this research.

Texte intégral

1. Introduction

  • 1 This article draws on 26 months of research, conducted between 2013 and 2023, the bulk of which was (...)
  • 2 Starting with the 1999 US Supreme Court decision Olmstead vs. L.C., sheltered workshops have come u (...)

1Early in my fieldwork, while I was attending a workshop with academics, policy-makers, and activists, a government official condemned “sheltered workshops” as unacceptable and segregating ways of caring for disabled people in Uganda.1 This kind of condemnation turned out to be a staple of disability rhetoric in Uganda, something that often came up at academic, activist, and policy events. Given my own background in North American disability activism, I nodded in agreement, almost by instinct. The term “sheltered workshop” refers to a set of arrangements that provide people with cognitive impairments with a separate, segregated workplace, doing low-skilled work for below-minimum wages. These arrangements have become widely decried as paternalistic and exploitative. Institutions for disabled people have a troubling history within Europe and North America, relying on narratives of charitable assistance, while receiving state and private funds, confining and warehousing individuals, and exploitatively extracting value from their labor with little or no compensation.2

2A number of months after that meeting, however, something dawned on me: rather than a situation where disabled people were pervasively confined to institutions, there were few institutional resources of any kind that focus on people with cognitive impairments in the country, and those were primarily organizations run by Catholics and Pentecostals. Such organizations were institutions where disabled people live and work and study in ways that involve a considerable degree of separation from wider community life. According to the scripts of the Global North disability rights movement, then, what these Christian organizations do is what should not be done: these organizations contribute to the project of institutionalization, while the telos of good disability politics should be de-institutionalization.

3While in no way questioning the importance of critiques of oppressive and exploitative so-called “caring” institutions, this article develops a more capacious understanding of what Christian institutions do for disabled people in Uganda. At the same time, it proposes a way of thinking about institutions that does more than simply condemn. This effort requires reckoning with disability outside the history and political-economy of the Global North, as well as moving beyond the teleologies and templates of Euro-American disability politics, which may hinder more than help in making sense of the stakes of these Ugandan organizations (e.g., Livingston, 2006; Staples & Mehrotra, 2016; Friedner & Zoanni, 2018).

  • 3 Inspired by these activist efforts, Snyder and Mitchell (2006) provide an important classical disab (...)

4This effort also involves something broader – namely, reckoning with some fundamental assumptions that underlie Global North critiques of institutions.3 For as important as these critiques are, they are deeply reliant on a liberal social imaginary that pictures the individual and the institution as fundamentally in opposition, while understanding the authority of institution to be a constraint on the freedom of the individual. Perhaps this is the twentieth-century bureaucratic version of state-of-nature, social-contract mythologies. Certainly this particular way of conceiving the individual-institution dyad is evident more widely within much social theory and activism around what Erving Goffman (1961) famously called “total institutions” – prisons, asylums, hospitals, and the like. Many contemporary academic and vernacular uses of institution follow Goffman and others in thinking about institutions as organizations that are discrete physical locations, and which contain, and often confine, a number of people around some purpose.

  • 4 Although it must be noted there is a critique of institutions present in Uganda, provoked by the pr (...)

5This article aims at understanding institutions, persons, and the relations between them in more robust way, both conceptually and empirically. If the logic of deinstitutionalization is powerful rhetorically, perhaps it is precisely so because it draws on a particular form of cultural common sense that pictures freedom as the absence of constraint. And if it has been politically expedient to construe institutions as anathema within Global North disability activism, this may not be the most useful analytic framework, and in the conclusion, I will suggest why it is politically limited as well. Finally, and empirically, if there are few institutional resources or social supports of any kind for most disabled people in Uganda, calls to abolish sheltered workshops are poor descriptions of the problems facing disabled people there.4

  • 5 A minor conversation in anthropological work connects place to personhood. Particularly compelling (...)

6For all these reasons, rather than thinking about Christian organizations’ institutions for disabled Ugandans as segregating spaces excluding disabled people from wider social life, this article investigates what these institutions do in terms of inclusion. Inclusion is understood here as constitutive inclusions, referring to the ways these organizations serve to underwrite not only the basic existence but also the personhood of their residents and students. This article, then, attends in the way that Christian organizations, as institutions, provide a spatial grounding for establishing the personhood of disabled people.5

  • 6 Through what linguists call interference, this locative bent is apparent even in the idioms of Ugan (...)

7Perhaps counter-intuitively, even as this line of argument runs against the conventions of disability studies conventions about institutions, it is nonetheless inspired by a critical disability studies conversation about what Mia Mingus (2011, 2017) calls the “myth of independence.” Mingus means that independence is a fiction while dependence is constitutive of being human, but some of the props or supports for some privileged kinds of person – generally able-bodied, often white and male – are never perceived as such. So too is this line of argument inspired by insights from African philosophers. Alexis Kagame, Kwasi Wiredu, and others have noted what Wiredu (2009: 14), calls the “locative conception of existence” in a variety of African languages. By speaking of “locative,” Wiredu means that the linguistic terms for existence are spatial in nature. To be is to be somewhere – here or there. This is certainly true for many languages in Uganda. In Luganda, the most widely spoken of these, “to be” is to be rooted somewhere, “to have” is to be with (-lina), and to persist is to endure in some location (-beera).6

  • 7 For an important fellow-traveling analysis of institutions as enabling “communities of difference” (...)

8Drawing on such insights, this article understands Christian organizations for disabled people as institutional settings of delimited space and regulated times that not only underwrite the existence of a range of manifestly unconventional beings, but also render these beings persons. The kind of enabling scaffolding that underwrites personhood is easily taken-for-granted in the case of conventional bodyminds, but it cannot be in the case of the people I write about here.7

2. The work of humanity

9Insofar as disabled labor and its exploitation is central to the sheltered-workshops rhetoric that I mentioned at the outset, it is worth beginning with labor. Both the Catholic home and the Pentecostal school involve disabled people living and studying removed from wider social life. Both organizations ask disabled participants to do various forms of labor without compensation – cooking and cleaning, farming, caregiving work, and making crafts. These crafts, including pots, baskets, jewelry, and candles, are sold in the organizations’ gift shops as a way to raise money for the institutions.

10This practice is similar to those observed in Euro-American sheltered workshops. But there are a number of reasons why the pejorative connotations of “sheltered workshops” does not apply to the Catholic home’s and the Pentecostal school’s approach. First, from a purely financial perspective, very little of that disabled labor results in an income or makes up much of the resources needed for both organizations to function. They remain largely dependent on donors and, in the case of the Pentecostal school, school fees. Only the Catholic home’s candle-making was significantly profitable as churches and monasteries generate a high demand for large candles around Christian holidays like Easter. Candle-making, moreover, was something that a mere two people usually worked on, a disabled resident and a non-disabled staff member.

11Second, although disabled labor was not profitable for the Catholic Home and the Pentecostal School, it remains valuable. It is a necessary part of both these organization’s daily operations, and it is generally not compensated. Most disabled workers are like Noah Lutalo. In his twenties, Noah lives at the Catholic home and is a key member of the group of staff, residents, and volunteers who tend to the organization’s flourishing “farm.” Noah spends a large portion of his day at the farm, which consists of a large garden plot. The farm generates much of the food that the Catholic home serves at its meals. This is how I always think of Noah: in gum boots, often caked with red mud, holding a heavy iron hoe, and wearing a bucket hat to protect him from the sun. Noah played a key role in keeping the farm going, raising chickens, goats, and pigs, and tending crops like plantains, potatoes, and greens.

12Noah was not paid in cash for his labor, but he did receive food, housing, and care in exchange for it. Rather than feel exploited, Noah was a proud farmer: he was proud of what he could do, which included skills he passed onto me (making mounds for sweet potatoes, for example), proud of his physical strength and vigor, and proud of how much responsibility he had. Of course, this does not mean all of the Catholic home’s residents were equally enthusiastic workers. Like workers everywhere, there were certainly other residents who were less enthusiastic, who required a lot of encouragement to garden or undertake other tasks. One can see much the same kind of thing across mopping floors, preparing lunch, cleaning toilets, weeding the lawn at both the Catholic home and the Pentecostal school: disabled people contributing to key activities of institutional life with varying degrees of enthusiasm. In general, older residents and students without physical impairments were expected to work, while young children and people with serious physical issues of any kind generally did not. Likewise, some of the residents and students who were judged capable of work but simply refused to do so were also let off the hook.

13Noah was able to convey his enthusiasm for farming because he could speak. Other people who did not speak or otherwise communicate in conventional ways nonetheless could also convey a commitment to their work. Julianne, a 14-year-old girl at the Pentecostal school, is one of them. Every late morning and late afternoon, Julianne has the responsibility of mopping away the dust from the cement floors of the school. I have vivid memories of Julianne drying off the floors by using both hands to push a towel across them, back and forth, day in and day out, with a look of intense concentration on her face. These examples of Noah and Julianne question the rhetoric around sheltered workshops as being exploitative of disabled labor. I suggest these various laboring activities are important insofar as they enable individuals’ personhood – as something legible or recognizable – by virtue of being a contributing member of a collective.

  • 8 In a US-focused discussion, historian Sarah Rose (2017) points out that impairments were often prod (...)

14Understandings of work, disability, and humanity are deeply entangled in often-fraught ways. In many Global North contexts, industrialization played a key role in connecting disability to non-economic productivity, while also rendering certain forms of impairment greater problems than before the introduction of hourly wage-labor and factory-style efficiency.8 Uganda is not, by and large, an industrialized society; the majority of its people rely on subsistence agriculture to survive. There is, nonetheless, a strong emphasis on various forms of productive and reproductive labor as the basis for being conventionally human. In central Uganda, agriculture in general, and the cultivation of bananas in particular, have been particularly important for centuries. Agricultural labor has provided the template for norms of productivity that enable personal and collective growth, and thus is central to the achievement of personal value and dignity (Calkins, 2019; Hanson, 2003: 28-36; Schoenbrun, 1998: 79-83). One’s laboring productivity enables growth, ensuring that one is reproductive in terms both biological (children) and social (ties of kinship and obligation). To violate or fall short of these expectations is to fall short of normative humanity, and to establish oneself as a problem, or even as a danger (Boyd, 2013; Zoanni, 2018).

  • 9 In contrast, as I went about my daily life in Kampala, I met a number of people working as drivers (...)

15This is precisely the predicament of the majority of the Catholic home’s residents and the Pentecostal school’s students.9 In turn, the people who end up in such places tend to embody fairly profound forms of difference that compromise their ability to become properly productive and reproductive, thus calling into question their status as persons in the first place. These forms of difference launch them on the itineraries that end in Christian settings. This emphasis on productive labor as the basis of personhood provides the backdrop for understanding these institutions’ emphasis on activities like agriculture, small-scale manufacturing, and care.

  • 10 This also suggests a way to think about the meaning and value of work beyond extraction or capitali (...)

16For such reasons, once more, when I think about people like Noah farming at the Catholic home or Julianne mopping at the Pentecostal school, I tend not simply to see exploitative labor, or at least not primarily. Rather, it seems that a key part of disabled labor here is less about the creation of surplus value for extraction and circulation, though there are elements of that, than it is a means of enacting and enabling the personhood of those who work, of providing a set of legible practical arenas within which disabled people’s personhood can be elaborated and recognized. On the face of it, this may not seem like a particularly radical project, but the stakes of this work are by no means small for a group of people whose humanity is precisely put into question by virtue of the forms of difference they embody.10

3. The limits of time and space

  • 11 See Whyte (1998) for a discussion of everyday attitudes towards unconventionally minded people in r (...)

17The labor of people like Noah occurs within the delimited times and spaces of the Catholic home and the Pentecostal school. These times and spaces are highly organized as well as marked. Ask any neighborhood motorcycle taxi (boda-boda) driver or shopkeeper or petrol-station attendant exactly where either organization is located, and they will give you directions quite readily. But you would not have the best luck getting this information by asking using either organization’s name. Though some people in the neighborhood do know the organizations by the name “Caritas House,” or “Hope Centre,” many identify each of them by the appellation of the “house” (ennyumba) or school (essomero) of “idiots” (kasiru), of the “deranged” (zolo), or “mad” (mulalu). People know these organizations by these names because they know that the people who are there embody profoundly unusual ways of speaking and interacting, and they think that these differences reflect problems that are somehow cognitive in nature. Such designations are by no means affirmative, but they are not exactly hostile, either. They express some kind of acceptance of the presence of the people at the Catholic home and the Pentecostal school as a fixture of neighborhood life.11

18At the same time, if both organizations are set apart in local geography by the ways that people outside talk about the people inside, they are otherwise unremarkably folded into their neighborhoods. The Catholic organization has a pair of compounds on the southwest edges of Kampala; the main building abuts a slum, near a major market for fish and vegetables, alongside a busy two-lane road carrying traffic out of the city and into western Uganda. Just up the hill behind the market, off a dirt road, is a second building, at the end of a tree-lined alley of residential compounds. The Pentecostal school, meanwhile, also has two compounds. The first is not far from the Catholic home, within a hilly, sedate, shady neighborhood behind royal buildings of the kingdom of Buganda. The second is in the north-central edge of Kampala, along yet another major highway running out of the city, this time towards northern Uganda. It is on the edges of a swampy area lined by a major ring-road circling the city.

19All of these places have brightly painted gates – red and blue for the Pentecostal school, blue and yellow for the Catholic home – as well as the tall brick fences that are common for domestic compounds in Kampala. The compounds resemble many domestic spaces in Uganda in other ways, too. Inside the gates are large grassy areas with a central house lined by shaded verandahs, as well as several smaller outlying buildings.

20What you see when you visit the Pentecostal school and the Catholic home depends on when you are visiting. Both organizations run on tightly regimented schedules. For the Pentecostal school, the day’s activities begin officially at 8 am. By that time, the cook is boiling water for tea and making a porridge of milk and corn flour over charcoal stoves. Therapists and teachers begin streaming in around 7 am, as do parents arriving with children to volunteer (if they cannot afford the monthly school fees) or leaving them as they go to work (if they can afford the fees). Before classes, students play in the yard, with toys, or just rest. At 8 am, the morning begins with prayers, following by a variety of tasks including basic counting or writing, making baskets or pottery for sale, or more focused therapeutic activities. Classes last until 10 am, when it is time for a midmorning break for tea and games, followed by the resumption of classes, then another break for singing and announcements. Then there is lunch, typically beans, rice or posho, a bit of greens, and occasionally some meat for staff and parents. The afternoon resumes with more classes and therapy sessions. The day ends around 3 pm, as parents start to leave with their children. The compounds are mostly empty by 5 pm.

21Because the Catholic home is residential, with the majority of its staff members and residents living on site, days there begin much earlier, around 5 am, when staff members and resident slowly arise, prompted out of bed by their alarms, roommates, or primary caregivers. There is a morning prayer session at 7 am, then breakfast at 7:30 am, usually porridge or bread and butter. At 8 or 8:30 am the day’s work begins: for those deemed able, work consists of making crafts or tending the garden, as described above; for those in “school,” their activities include counting, reading, games, and therapy. All of these activities run until midday, when lunch is served. Those assigned to clean-up duties take the lead with dishes, while the rest doze, watch television, listen to music, or work on personal chores like laundry. Afternoon work usually resumes around 1:30 pm till another break at around 4 pm, when people rest again or else take up washing or preparing for dinner. The evenings are free: after dinner, people usually end up watching television, listening to music, chatting, or just dozing off.

22This brief overview of daily life at the Catholic home and the Pentecostal school suggests how stable it is, an everyday steadiness achieved through routines, habits, and buildings that are both instituted (composed, defined, stabilized) and instituting (compelling life, time, space, social relations). Here, it bears emphasizing that even as these schools are rather unusual institutions in Uganda, at the level of the day’s unfolding they resemble fairly conventional schools and homes in Uganda. Once more, this is no small thing: even as they are known as places for highly unusual people, the physical spaces of the Catholic home and the Pentecostal school make a quiet but significant claim – that who they welcome are first and foremost persons.

4. Figures of the family

  • 12 Hierarchical interdependence is one of the enduring themes in the history of central Uganda (Scherz (...)

23The routines and rhythms of life in place at the Catholic home and the Pentecostal school represent a particular inflection of kinship idioms and practices, which provide a kind of template for social interactions in these settings. The idealized household in Uganda generally includes spouses, children, parents, and extended kin networks of grandparents, cousins, and more. It is also thoroughly constituted by interdependencies. However, unlike in some progressive-left Euro-American discourses, which assume that interdependence is emancipatory, many people in Uganda not only affirm the value of interdependence but see it as properly hierarchical.12 Gender and generation are key in normative understandings of kinship, with considerable deference and privileges in principle granted to elders and men. In practice, of course, contemporary households in Uganda reflect a variety of arrangements and memberships: single parents, young people living together, aunts and uncles or grandparents, cross-generational friendships and companionships. But a paternalistic and gerontocratic extended household remains idealized as the foundation of wider collective life.

  • 13 This section and the following draw on ethnography previously presented in Zoanni (2019) and used t (...)

24I mentioned that the Christian organizations are referred to as homes by neighbors; this idea of home is not just external to these organizations but internally constitutive of them. Interactions and daily life at these places unfold as hierarchical caring relations that characterize conventionalized family life. Most staff members are called as “uncle” or “aunt” – introduced, addressed, and referred to as such, and so too are regular visitors. Uncle became my own designation in both as well.13

25In turn, all of the residents and students of these organizations are referred to as “children” (abaana) by staff, parents, neighbors, and supporters. These so-called “children” range considerably in age, from toddlers to adults in late-middle age. There are a number of participants in their 20s and 30s and a handful in their early 40s. Conversations with caregivers revealed there wasn’t much reflection about why adults in their 40s were considered “children”; it was something that was simply obvious. For these caregivers, it seems, the status of “child” is less tied to biological age than perceived limitations in cognitive capacity and social competence, as well as the corresponding forms of dependency that such limitations may bring.

26Obviously, this boils down to a kind of infantilization. Treating disabled people like children on the basis of cognitive impairment – i.e. without full autonomy, in need of care and custodianship – is another canonical concern of disability activism in Europe and North America. The concern of this critique is the denial of full personhood. Yet things may not be so simple in the case at hand. Childhood extends a personhood category that is both readily meaningful and socially available in Uganda to people with cognitive impairments. By figuring disabled people as children, these Christian organizations define them as persons who deserve care and support.

5. Senses of childhood

27This configuration of institutional life and personhood at the Catholic home and the Pentecostal school in terms of the household has practical implications. A kind of lived paternalism defines the everyday activities by which disabled people at these organizations are defined as children, including classroom routines and disciplines, hierarchal distributions of authority and care, and, in the case of the Catholic home, dormitory-style sleeping arrangements. This making of disabled personhood-as-childhood occurs in ways that are material as well as social. It begins with the surface of the body. The Catholic home’s residents and the Pentecostal school’s students wear school uniforms, on the model of the apparel worn by other school children in Uganda more generally. For girls, this consists of either a knee-length dress, or a shirt or blouse with a knee-length skirt; for boys it is a shirt and a pair of shorts. Biological age once more does not matter when it comes to who wears these uniforms; they are worn even by the oldest disabled members of these Christian organizations in their 30s and 40s. Like all Ugandan school children, they wear these uniforms for everyday activities, like classes, community outings, and recreation.

28Hair is a second medium through which the childhood status of disabled people is produced in these organizations. Who wears short and long hair is not rigidly fixed in Uganda, but it does have some broad contours. Shaved heads are the norm for both boys and girls. In part, this is hygienic, as it helps control parasites like lice. In part, this is for reasons of economy, as braids and hair work can be expensive. And it is finally for reasons of comfort, as such hair may be heavy and hot. In contemporary Kampala, longer hair, especially as stylized or braided, serves adults and especially women as a means of social distinction and aesthetic cultivation. In this way, having longer hair is often a privilege if not a requirement of adulthood, while shaved hair functions as an obligatory mark of childhood. At the Catholic home and the Pentecostal school, relatively few of the female staff members had shaved heads, though it was more common for men. In contrast, all of the disabled men and nearly all of the disabled women had shaved heads.

29Once again, the fact that the status of “child” is inscribed on the bodies of disabled people clearly amounts to some kind of infantilization. Yet it remains important to understand that the extension of such childhood status presents people as deserving of and properly entitled to care and support. Alongside the importance of “family” as an institutional template, a second template at work is “school.” Having a school uniform in contemporary Uganda marks one as a “student” or “scholar,” as it would be said. Going somewhere to spend the day studying marks one as possessing a certain degree of privilege not available to those children who work in their families’ fields, homes, or businesses. Not only attending but also sleeping at school is an expensive and privileged position within social life in Uganda: it means one’s family is rather well-off and possibly extremely rich, or else one has considerable intellectual gifts. Participating in institutions featured not only as families but as schools is for this reason an aspiration for many in Uganda.

30Like everywhere, non-disabled children and youth in contemporary Uganda certainly do not understand and experience school in precisely these terms. Unsurprisingly, disabled people at the Catholic home and the Pentecostal school react to their status as children in various ways. Non-reaction is perhaps most common. Many of these “children” do not speak, and the majority of those who do speak don’t appear to give the term much reflection. They are too busy playing, learning, and exploring to have much time for reflection on categories or the politics of personhood.

31But a few have stronger reactions. Consider Lamula and Prossie, both of whom participate in the Catholic home. Lamula has a kind of honorary status as one of organization’s “founding members,” because she was one of its first two residents. Lamula’s exact age is unknown, but staff members guess she is in her 40s; her hair has turned completely grey. Lamula, however, insists she is a “child,” chiefly as a corrective to anyone who suggests otherwise, and she does so with a great deal of vehemence. This happens most often when someone greets Lamula in passing with the Luganda honorific nnyabo, a term that is roughly equivalent to “madam” or “ma’am,” and which for reasons of politeness is generally used in both casual and formal interactions. So routinized are invocations of nnyabo that even staff members who have known Lamula for years slip up; it is all the more common for visitors or the hapless anthropologist to do so. Addressing Lamula as nnyabo prompts a torrent of complaints on her part. She insists that she is not nnyabo but a child, and she enrolls anyone in earshot as a witness to the injustice of anything said to the contrary. Several caregivers find this funny, and they tease Lamula on this front, calling her a woman (omukyala or omukazi) much to her chagrin. Lamula, in response, is always tenacious in claiming her childhood status, and her increasingly urgent and distraught insistence typically drives even amused bystanders to join in collective efforts to make amends for the mistake and assure her they know that she is a child.

32In contrast to Lamula, Prossie is certain she is not a child. Prossie is a single mother in her late-30s who had been hired at the Catholic home after having been a resident for a couple of years. She had been first brought to live there by a family friend, but was soon “promoted” to the role of a paid staff-member when it became clear she needed little in the way of supervision to engage in cleaning, cooking, or crafts-making. Today Prossie rents a one-room house not far from the Catholic organization, and she lives there with her son. The organization’s director considered Prossie one of the success stories of the “children,” as she told me. Prossie had, after all, transitioned from being in the category of cared-for to being a caregiver, even as she was herself disabled, and she was in the exceptional situation of being a disabled member who was paid. It was known among other staff members that Prossie had a diagnosis of Down syndrome – she had received such a diagnosis when she first came to live in the Catholic home. They tended to talk about her as one of the “children,” and the director brought Prossie to my attention as a successful “child.” Yet, in our conversations, Prossie was very adamant that she was not one of the “children.” She pointedly distanced herself from “them.” In talking about her relationships with other people within the Catholic home, Prossie aligns herself exclusively with other staff members; she singles out several staff members as particular friends, while professing she does not feel as close to any of the “children” for whom she cared.

33Prossie thus resists being a “child.” Although she was still considered one by many staff members as a result of her impairment, she had to some extent transcended childhood by virtue of gainful employment, renting a house, and having a child. Lamula, meanwhile, fully embraced her status as a child and fervently resists even conversational formalities that position her as “woman” rather than “child.”

34These two women respectively mark the two outer poles on a continuum of possible reactions to being grouped in the class “child”; this is a continuum ranging from total identification to rejection. It also points to a continuum of the rights and responsibilities which people at the Pentecostal school and the Catholic home are given within the context of family-based hierarchies that define everyday life in these settings. Prossie is more an adult than a child in terms of her life, position, and treatment, though not all staff members recognize her in the same way as she understands herself. In contrast, Lamula is sufficiently old, respected, and conventionally articulate enough that she is often addressed as a “woman” or “ma’am” rather than merely treated as a “child,” even as she claims the status of the latter. In spite of the differences in Lamula’s and Prossie’s predicament, what they share is having their personhood defined in terms of childhood, which serves as the baseline in terms of which they negotiate their own self-understandings and social relations.

35Finally, the examples of Prossie and Lamula illustrate a contradiction between the ideological underpinnings and the concrete practices of everyday life at both Christian organizations. Despite the ways these institutions are organized around the template of kinship hierarchies, they espouse values of equality, as something to be realized either in present collective life or as a future aspiration. The Catholic home as a transnational organization is premised on an egalitarian theology that grounds a disability engagement in a vision of a fundamental equality insofar as all humans are broken, vulnerable, and dependent on each other as well as God in the ultimate instance. Meanwhile, the Pentecostal school is modeled on US and UK pedagogical norms of inclusive education and independent living. The basic idea is to provide a specialized education for “children” in a way not possible in Uganda’s “mainstream” schools, with the ultimate goal of producing adults whose lives are both relatively “normal” and “independent.” To this end, there were classes in math and literacy as well as practical skills like pottery and weaving.

36And yet everyday life and social interactions at both Christian organizations reflected enduring hierarchal kinship relations between adults and “children.” This was most obvious at the Catholic home, as a residential institution where people moved in but rarely out. There was also a “school component,” but it catered to the young children and focused mainly on games, music, and crafts like coloring; the aim was to pass an edifying day rather than produce an adult. Enduring hierarchies were also a de facto norm at the Pentecostal school. A handful of students successfully “graduated” each year, meaning they left to take up employment, but not more than the number of students who left either because their family moved, could no longer afford the school, or concluded it wasn’t worth the cost. The vast majority of students remained perpetual students and thus children.

6. Conclusion

37This article began with an overview of critiques of sheltered workshops in particular and institutionalization in general – critiques which are central to the disability rights movement in Europe and North America, but which also shape national disability conversations in Uganda. The Catholic home and the Pentecostal school I have discussed clearly resemble the targets of this critique in key respects, insofar as they embody relatively enduring and separate contexts for the disabled students and residents who participate in them. They qualify, in this sense, as “total institutions,” which is largely how contemporary social theory tends to currently understand institutions. It is part of the vernacular that an institution is some discrete, bounded place, like a home, a school, a hospital, a prison. Notably, though, before this notion of the total institution became common the 1960s, there was an older sense of social institution, inspired by Durkheim and pervasive in early social anthropology and in structural-functional analysis. The concept of “social institutions” refers to the organizing structures that shape social life – religion, kinship, markets, law (e.g., Durkheim, 2014; Radcliffe-Brown, 1958; Spiro, 1965). Thus, we find two very different understandings of institutions – total institutions and social institutions – apparent even within the short span of the twentieth-century human sciences.

38In thinking about the ethnographic material in this article, I want to suggest this ambiguity can be an opening rather than a problem, both for understanding the Catholic home and the Pentecostal school I have discussed and for understanding institutions more generally. The term institution comes from French and before that Latin, where it conveys the sense of setting-up, establishing, ordering. There is good reason to be skeptical about making an argument based on etymology alone, but the basic sense of the term calls attention to the ways that both total and social institutions constitute time, space, bodies, the life course, exchange and interactions, and the like. The ways that institutions institute, in other words, scaffolds person-making and enables collective life.

39Thinking along these lines, and in light of the institutional routines and rhythms of the Catholic home and the Pentecostal school, the difference between social institutions and total institutions has less to do with function or essence than with the marked and the unmarked, the bounded and unbounded, the foregrounded and the backgrounded. And what forms of institutionality scaffold one’s life – scaffold in the sense of both enabling and constraining – and whether this is relatively concrete and discrete, or diffuse and invisible, ultimately turns on privilege – which kinds of minds, bodies, and ways of being are privileged, and which are not. This, of course, is bound up in matters of race, class, gender, sexuality, and, in the case I am discussing, ability. Normative collective arrangements – so-called social institutions like family, work, religion – have historically not supported people with cognitive impairments in the Global North, hence the reliance on so-called total institutions, or spaces of confinement.

40In Uganda, where there is not an history of widespread institutionalization for people with cognitive impairments, we see a handful of Christian examples providing what little formal support does exist. They are, in a sense, total institutions that function for disabled people in confined times and spaces much like social institutions do for non-disabled people. They even work on the model of canonical social institutions, the family and the school. They are concentrated examples of the process of instituting persons more generally, a task which for non-disabled people is distributed rather than concentrated in time and space. However, in the case of people whose minds, bodies and ways of being profoundly transgress social expectations, this scaffolding of person-making unfolds within a handful of Christian institutions.

  • 14 Kulick and Rydström (2015) use the language of “facilitation” with respect to sex and sexuality, an (...)

41Making this argument puts me in wider feminist and disability studies conversations that understand dependence as constitutive of being human, even as it challenges some of the anti-institutional rhetoric that might seem self-evident within such conversations. In this view, we do not make ourselves in the first instance but we depend on others to begin the work of making us (Kittay & Feder, 2003). Disability studies scholars and activists have further rejected the assumptions that dependence is inherent to disability and that independence is fundamentally the baseline of being human, preferring instead to redefine independence as itself an unmarked form of dependence – that is, as “the vast networks of assistance and provision that make modern life possible” (Davis, 2007: 4). The point here is not that that people are all equally vulnerable, or vulnerable in the same ways or to the same extent. Rather, some kinds of minds, bodies, and ways of being are more or less readily scaffolded into personhood and thus normative social life, while others are banished from this project.14

42Thinking about institution and person in this way helps us understand what the Catholic home and the Pentecostal school do beyond kneejerk dismissals that a Global North disability politics would provide. It can also help us reframe Euro-American disability conversations. One of the bitter ironies of the project of de-institutionalization in Europe and North America is its complicity with neoliberal maneuvers. Calls to liberate institutionalized people accompanied the slashing of state services and support and the withdrawal of state responsibility from disability and mental health care in the 1970s and 1980s. This, in turn, pushed immense caregiving responsibilities onto families and entrenched a highly racialized and sexist economy of care-work. It also led to a wave of homelessness as people with psychiatric conditions and addiction were pushed onto the streets (e.g., Scallett, 1989; Lamb & Bachrach, 2001).

43Reframing this critique of the historical effects of de-institutionalization, we can say that critiques of institutions tout court rely on a kind of misplaced concreteness, by making institutions synonymous with total institutions and thus making them bad objects. Against this, the upshot of this article suggests that the more productive framing and more pressing concern is how broadly distributed and available institutional supports and resources are. Not incidentally, this framing better describes what was actually successful about some of the dimensions of so-called deinstitutionalization and the corresponding state of “independent living.” These efforts have redistributed care services, professional knowledge, and financial support outside the bounds of asylums and sheltered workshops and into group and individual homes, supporting people to make their own lives on their own terms, to extent that this is possible. This was not the abolition of institutions per se – it was making better institutional supports.

  • 15 Graeber (2016: 16-7) discusses a parallel example of how “deregulation” has come to be a self-evide (...)

44It should be clear by now that this effort to think institutions is not a defense or celebration of “carceral logics,” as Liat Ben-Moshe (2020) puts it. Though I have thought ethnographically alongside a pair of institutions for disabled people in Uganda, the analysis I have developed can help us estrange and displace a certain reflex or grammar of liberal politics that has shaped Euro-American disability activism and probably politics more generally, especially in progressive-left or radical contexts.15 My fieldwork with the Catholic home and the Pentecostal school brings into view what a particular set of total-esque institutions do in instituting personhood of profoundly non-normative people. Non-disabled people too relay on institutional supports of the kind anthropologists and sociologists used to call social institutions – that is, institutional supports that are broadly distributed in collective life and thus largely taken for granted. In the last instance, then, the intellectual and political question becomes not – to put it crudely – where are the institutions and how do we get rid of them or free people from them, but rather – how can we expand institutional supports to wider swathes of the condition we call human?

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Bibliographie

Akyeampong Emmanuel. 2015. A historical overview of psychiatry in Africa. In Emmanuel Akyeampong, Allan G. Hill & Arthur Kleinman (eds). The culture of mental illness and psychiatric practice in Africa: 24-49. Bloomington: Indiana University Press.

Ben-Moshe Liat. 2020. Decarcerating disability: Deinstitutionalization and prison abolition. Minneapolis: University Of Minnesota Press.

Biehl João. 2005. Vita: Life in a zone of social abandonment. Berkeley: University of California Press.

Bourdieu Pierre. 1970. The berber house or the world reversed. Information (International Social Science Council), 9(2): 151-70. Online: https://doi.org/10.1177/053901847000900213.

Boyd Lydia. 2013. The problem with freedom: Homosexuality and human rights in Uganda. Anthropological Quarterly, 86(3): 697-724. Online: https://doi.org/10.1353/anq.2013.0034.

Bredewold Femmianne H. & Simon van der Weele. 2022. Social inclusion revisited: Sheltered living institutions for people with intellectual disabilities as communities of difference. Medicine, Health Care and Philosophy, 26: 201-13. Online: https://doi.org/10.1007/s11019-022-10135-7.

Burch Susan. 2021. Committed: Remembering native kinship in and beyond institutions. Chapel Hill: University of North Carolina Press.

Calkins Sandra. 2019. Health as growth: Bananas, humanitarian biotech, and human-plant histories in Uganda. Medicine Anthropology Theory, 6(3): 29-53. Online: https://doi.org/10.17157/mat.6.3.658.

Davis Lennard J. 2007. Dependency and justice: A review of Martha Nussbaum’s frontiers of justice. Journal of Literary and Cultural Disability Studies, 1(2): 1-4.

Desjarlais Robert. 1997. Shelter blues: Sanity and selfhood among the homeless. Philadelphia: University of Pennsylvania Press.

Durkheim Emile. 2014. The rules of sociological method: And selected texts on sociology and its method. Ed. by S. Lukes; updated edition. New York: Free Press.

Ferguson James. 2015. Give a man a fish: Reflections on the new politics of distribution. Durham: Duke University Press.

Finzsch Norbert & Robert Jütte (eds). 1997. Institutions of confinement: Hospitals, asylums, and prisons in Western Europe and North America, 1500-1950. Cambridge: Cambridge University Press.

Friedner Michel & Tyler Zoanni. 2018. Disability from the south: Toward a lexicon. Somatosphere (”Disability from the South”). Online: http://somatosphere.net/2018/12/disability-from-the-south-toward-a-lexicon.html.

Garcia Angela. 2015. Serenity: Violence, inequality, and recovery on the edge of Mexico city. Medical Anthropology Quarterly, 29(4): 455-72. Online: https://doi.org/10.1111/maq.12208.

Goffman Erving. 1961. Asylums: Essays on the social situation of mental patients and other inmates. New York: Anchor Books.

Graeber David. 2016. The utopia of rules: On technology, stupidity, and the secret joys of bureaucracy. New York: Melville House.

Hanson Holly Elizabeth. 2003. Landed obligation: The practice of power in Uganda. Portsmouth: Heinemann.

Hyde Mark. 1998. Sheltered and supported employment in the 1990s: The experiences of disabled workers in the UK. Disability & Society, 13(2): 199-215. Online: https://doi.org/10.1080/09687599826786.

Jackson Lynette A. 2005. Surfacing up: Psychiatry and social order in colonial Zimbabwe, 1908-1968. Ithaca: Cornell University Press.

Kaufman Sharon. 2003. Hidden places, uncommon persons. Social Science & Medicine, 56(11): 2249-61. Online: https://doi.org/10.1016/S0277-9536(02)00225-3.

Kittay Feder Eva & Ellen K. Feder (eds). 2003. The Subject of care: Feminist perspectives on dependency. New York: Rowman & Littlefield.

Kulick Don & Jens Rydström. 2015. Loneliness and its opposite: Sex, disability, and the ethics of engagement. Durham: Duke University Press.

Lamb H. Richard & Leona L. Bachrach. 2001. Some perspectives on deinstitutionalization. Psychiatric Services, 52(8): 1039-45. Online: https://doi.org/10.1176/appi.ps.52.8.1039.

Livingston Julie. 2006. Insights from an african history of disability. Radical History Review, 94: 111-26. Online: https://doi.org/10.1215/01636545-2006-94-111.

McCulloch Jock. 1995. Colonial psychiatry and the african mind. Cambridge: Cambridge University Press.

Mingus Mia. 2011. Changing the framework: Disability justice. Leaving Evidence. Online: https://leavingevidence.wordpress.com/2011/02/12/changing-the-framework-disability-justice/.

Mingus Mia. 2017. Access intimacy, interdependence and disability justice. Leaving Evidence. Online: https://leavingevidence.wordpress.com/2017/04/12/access-intimacy-interdependence-and-disability-justice/.

Mitchell David & Susan Snyder. 2015. The biopolitics of disability: Neoliberalism, ablenationalism, and peripheral embodiment. Ann Arbor: University of Michigan Press.

Pringle Yolana. 2018. Psychiatry and decolonisation in Uganda. London: Palgrave Macmillan.

Radcliffe-Brown A. R. 1958. Method in social anthropology. Ed. by M. R. Srinivas. Chicago. The University of Chicago Press.

Rose Sarah. 2017. No right to be idle: The invention of disability, 1840s-1930s. Chapel Hill: University of North Carolina Press.

Rothman David J. (ed.). 2002a. Conscience and convenience: The asylum and its alternatives in progressive America (2nd edition). New York: Routledge.

Rothman David J. 2002b. The discovery of the asylum (2nd edition). New York: Routledge.

Rothman David J. 2004. The willowbrook wars: Bringing the mentally disabled into the community. Routledge.

Scherz China. 2014. Having people, having heart: Charity, sustainable development, and problems of dependence in central Uganda. Chicago: The University of Chicago Press.

Schoenbrun David Lee. 1998. A green place, a good place: Agrarian change and social identity in the great lakes region to the 15th century. Heinemann.

Sentumbwe Nayinda. 1995. Sighted lovers and blind husbands: Experiences of blind women in Uganda. In Benedicte Ingstad & Susan Reynolds Whyte (eds). Disability and culture: 159-73. Oakland: University of California Press.

Snyder Sharon & David Mitchell. 2006. Cultural locations of disability. Chicago: The University of Chicago Press.

Spiro Malford E. 1965. A typology of social structure and the patterning of social institutions: A cross-cultural study. American Anthropologist, 67(5): 1097-119.

Staples James & Nilika Mehrotra. 2016. Disability studies: Developments in anthropology. In Disability in the Global South: 35-49. Springer. Online: https://doi.org/10.1007/978-3-319-42488-0_3.

Szasz Thomas S. 1971. American association for the abolition of involuntary mental hospitalization. American Journal of Psychiatry, 127(12): 1698. Online: https://doi.org/10.1176/ajp.127.12.1698.

Taylor Sunaura. 2004. The right not to work: Power and disability. Monthly Review. Online: https://monthlyreview.org/2004/03/01/the-right-not-to-work-power-and-disability/.

Wiredu Kwasi. 2009. An oral philosophy of personhood: Comments on philosophy and orality. Research in African Literatures, 40(1): 8-18.

Whyte Susan Reynolds. 1998. Slow cookers and madmen: Competence of heart and head in rural Uganda. In Richard Jenkins (ed.). Questions of competence: Culture, classification and intellectual disability: 153-75. Cambridge: Cambridge University Press.

Wolf-Meyer Matthew. 2020. Facilitated personhood. Journal of the Royal Anthropological Institute, 26(1): 167-86.

Zoanni Tyler. 2018. The possibilities of failure: Personhood and cognitive disability in urban Uganda. The Cambridge Journal of Anthropology, 36(1): 61-79. Online: https://doi.org/10.3167/cja.2018.360105.

Zoanni Tyler. 2019. Appearances of disability and christianity in Uganda. Cultural Anthropology, 34(3): 444-70. Online: https://doi.org/10.14506/ca34.3.06.

Zoanni Tyler. 2021. The ecology of disabled minds in urban Uganda. Medical Anthropology, 40(2): 169-81. Online: https://doi.org/10.1080/01459740.2020.1755285.

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Notes

1 This article draws on 26 months of research, conducted between 2013 and 2023, the bulk of which was thirteen months spanning 2016 and 2017. My fieldwork ranged widely across Ugandan family life, secular NGOs, and government offices, but particularly focused on intensive participant-observation in the two Christian institutions I mention in the present article.

2 Starting with the 1999 US Supreme Court decision Olmstead vs. L.C., sheltered workshops have come under activist and legal fire, and in some contexts they have been phased out (Australia and the US) or replaced with more neoliberal “social enterprises” (in the UK). See, e.g., Hyde (1998) and Rose (2017).

3 Inspired by these activist efforts, Snyder and Mitchell (2006) provide an important classical disability studies critique of institutions as “various confining locations that restrain disabled people and prevent them from meaningful participation.” They understand institutions to be the dominant “cultural locations of disability” and as fundamentally “sites of violence, restriction, confinement and absence of liberty for people with disabilities.” This is in contrast to sites that enable “more authenticating cultural modes of disability knowledge, such as the disability rights movement, disability culture, the independent living movement, and other experientially based organizations of disabled people” (ibid.: 4). In subsequent work, however, Mitchell and Snyder (2015) also make the nuanced observation that even oppressive institutions have provided spaces for disability collectivity and solidarity to emerge. As they write, such settings “have sometimes transformed segregated experiences into sites for collective undertaking […] in spite of the organization of spaces commonly designed to thwart such goals.”

More generally, much as been written about institutions in the Global North. For an important historical statement of de-institutionalization politics in relation to psychiatry, see Szasz (1971). For a genealogy of institutions and of de-institutionalization that draws connections to prison abolition, see Ben-Moshe (2020). For a series of case studies in the history of confinement in Western Europe and North America, see Finzsch & Jütte (1997). On the history of institutions in North America, see Rothman (2002b, 2002a) and particularly Rothman (2004) on institutions for people with intellectual impairments. For a powerful, person-centered study of settler-colonialism and the institutionalization of Indigenous people in North America, see Burch (2021). There was never widespread institutionalization in most of Africa, but institutions were still bound up in colonial projects, as a number of studies of colonial psychiatry and asylums demonstrate (e.g., Akyeampong, 2015; Jackson, 2005; McCulloch, 1995; Pringle, 2018).

4 Although it must be noted there is a critique of institutions present in Uganda, provoked by the proliferation of orphanages in the country and the emergence of a kind of orphanage and adoption industry. The government has attempted to regulate this development, including with the 2013 legislation, the Children (Approved Homes) Rules, which implemented a number of requirements for residential institutions to operate. These government efforts did not particularly affect the organizations I discuss, insofar as the Pentecostal school is non-residential and the Catholic home was both long-established and well-respected within Uganda.

5 A minor conversation in anthropological work connects place to personhood. Particularly compelling is Sharon Kaufman’s (2003) seminal essay on the use of life extension technologies in “hidden places” in preserving the biological function of “brain-dead” US hospital patients as “uncommon persons.” Important work on institutions for addiction, madness, and homelessness is also part of this inquiry. See, e.g., Biehl (2005), Desjarlais (1997), Foucault (1995), Garcia (2015), and Goffman (1961).

6 Through what linguists call interference, this locative bent is apparent even in the idioms of Ugandan English. A typical way to response to efforts to find someone or something – whether a spirit or a person, a good or a service, someone’s home – is to say that she, he, or it is “there.”

7 For an important fellow-traveling analysis of institutions as enabling “communities of difference” for people with intellectual disabilities, see Bredewold & van der Weele (2022).

8 In a US-focused discussion, historian Sarah Rose (2017) points out that impairments were often produced by hazardous industrial workplaces at the same time as disabled people were increasingly marginalized through industrialized societies’ investment in the able-bodied worker as the benchmark for socially valorized personhood. This was the figure of the “breadwinner,” idealized as a male, independent, and self-sustaining laborer (Ferguson, 2015: 40-1). On disability in neoliberal capitalism, David Mitchell and Susan Snyder (2015: 28-9) observe that disabled people embody “nonproductive bodies” par excellence.

9 In contrast, as I went about my daily life in Kampala, I met a number of people working as drivers or vegetable sellers or petty traders, living and working outside institutional settings and without a diagnosis – people who, if living in Europe or North America, would receive diagnoses of conditions like Down syndrome and would likely not be working in ordinary jobs. It was not that people did not have various pejorative terms for such individuals: words like tayonneka (spoiled), kasiru (stupid), or mulalu (mad) were used by neighbors, relatives, and colleagues. But otherwise, these individuals went about life undiagnosed and relatively typically, as economically and socially productive and reproductive persons (Zoanni, 2021). Relatedly, disability activist organizations in Uganda are dominated by those with physical or sensory conditions like blindness and deafness. These are people who can find work and partners and start a family in ways that generally resemble the trajectories for normative personhood in Uganda. As one study of blind Ugandans suggests (Sentumbwe, 1995), this seems generally true for non-activist disabled Ugandans as well, albeit in ways cross-cut by gender inequalities that make it easier for economically viable disabled men to secure spouses than for disabled woman with similar degrees of economic self-sufficiency.

10 This also suggests a way to think about the meaning and value of work beyond extraction or capitalist-productivist ideologies. In a provocative reflection, disability studies scholar and artist Sunaura Taylor (2004) discusses what she calls “the right not to work.” Taylor notes that she will never be economically productive or have obvious economic value within a socioeconomic system that privileges able-bodied individuals and their labor capacities; she suggests that making productive work the basis of human dignity and value is inherently a form of ableist discrimination. Even so, however, Taylor opens her essay with a reflection about her love of painting, an activity she excludes from work because it is not something that is profitable. Yet it is not insignificant that Taylor invokes painting as a source of value, pleasure, engagement, and dignity. This may not be “work” in the narrow sense of compensated or profitable activity, but it is work in a broader sense of purposive activity that requires effort, intention, and skill in order to materialize things and create relationships, and for which she receives recognition as a producer. In a way, then, what Taylor identifies so compellingly is not simply the right not to work, in a strict sense, but rather the right to not have work reduced to the terms of monetized labor and capitalist extraction.

11 See Whyte (1998) for a discussion of everyday attitudes towards unconventionally minded people in rural eastern Uganda.

12 Hierarchical interdependence is one of the enduring themes in the history of central Uganda (Scherz, 2014; Hanson, 2003).

13 This section and the following draw on ethnography previously presented in Zoanni (2019) and used to make a different overarching argument.

14 Kulick and Rydström (2015) use the language of “facilitation” with respect to sex and sexuality, and Wolf-Meyer (2020) does so for thinking about personhood.

15 Graeber (2016: 16-7) discusses a parallel example of how “deregulation” has come to be a self-evident good within US and UK politics, even on the left.

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Tyler Zoanni, « Constitutive inclusions »Alter [En ligne], 18-3 | 2024, mis en ligne le 13 septembre 2024, consulté le 16 juillet 2025. URL : http://journals.openedition.org/alterjdr/6577 ; DOI : https://doi.org/10.4000/12aoq

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Tyler Zoanni

University of Bremen
zoanni[at]uni-bremen.de

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