Disabled Lives, Personhood, and Politics in Uganda: An Interview with Tyler Zoanni

Photo by Tyler Zoanni.

This post builds on the research article “Appearances of Disability and Christianity in Uganda,” which was published in the August 2019 issue of the Society’s peer-reviewed journal, Cultural Anthropology.

In this interview, we sat down with Tyler Zoanni to discuss his article “Appearances of Disability and Christianity in Uganda” published in August 2019 in Cultural Anthropology. We approach this article from different scholarly perspectives, Sarah O’Sullivan, a PhD candidate working in Uganda on issues of post-conflict development politics and the sorts of “dependent” subjects imagined by NGOs and the state and Hannah Quinn, a PhD candidate working with cognitively disabled adults in Canada on the social construction of “capacity to consent,” particularly as it relates to sexual access and regulation. We appreciate Zoanni’s willingness to explore his article in more depth from a variety of angles, including a discussion of personhood as a useful analytic for exploring lived experiences of disability in Uganda and beyond, as well as pity and disability models, fieldwork ethics, and our commitments to our research participants.

Sarah O’Sullivan and Hannah Quinn: In this piece you provide a striking account of the lives of cognitively disabled people in Uganda that contributes to both disability studies and ethnography in the African context. Beyond that, this piece would no doubt be a generative addition to any anthropology of personhood course. For people who may not be familiar with your other published work, can you tell us more about how you understand this particular article—and your focus on the right to appear, childhood, and dependency—fitting in to questions of personhood in anthropology? How does your work with cognitively disabled people in Uganda speak to and challenge the genealogy of “personhood” as a category of study in anthropology from Mauss’s “notion of the person” (1979), Wagner’s “fractal person” (1991), to Strathern’s (1988) and Mosko’s (2015) theorization of the “dividual.”

Tyler Zoanni: Thank you for this question! It cuts to the heart of things, because the book I am working on is fundamentally about personhood. One thing to note at the outset is that personhood has a vaguely old-fashioned—can we say retro?—feel to it. In recent decades in anthropology, this notion has been partially displaced by other terms, first self and then more recently subject. But things may be turning again: the last few years, I’ve noticed personhood showing up with what seems to be increasing frequency in books and articles. Though I’m not sure: perhaps this observation simply reflects the fact that I’ve been on the lookout. In any case, I contend that “the notion of the person” is a generative and capacious analytic, something that can be good to think with when it comes to plants, AI, mountains, fetuses, corporations, Christians, and much more. I think it is useful because it carries a notable degree of precision, referring to the status of being a member of a collectivity, with claims and responsibilities; because this status seems pretty fundamental to the workings of any collectivity where humans are involved (was Mauss right to think personhood is a fundamental “category of the human mind”?); and finally because most places at most times seem to have had fairly sophisticated traditions of thinking about the person. There are also political stakes here. If anthropologists have sometimes been less interested in personhood, theologians and philosophers, churches and corporations, lawyers and all kinds of activists (e.g., environmental, abortion) have remained keenly interested in the category. I’ve heard colleagues joke about anthropologists’ strong desire for relevance and their equally strong talent for irrelevance, but anthropologists have an awful lot to say about fierce and ongoing struggles over matters of personhood, and we shouldn’t leave these matters to analytic philosophers or corporate lawyers.

I take enormous inspiration from the Mauss essay you mention, as well as the conversation that it has inspired within anthropology. Still, I think there are some well-worn grooves that define this conversation. A great deal of this work is concerned with normative visions of personhood that hold sway, apparently monolithically, in one or another cultural and social setting, and with the successful cultural construction and social achievement of those versions of personhood. There’s always the danger of this style of analysis getting rather essentializing and ahistorical, not to mention existentially misleading. People surely live in light of, and while trying to live up to, normative visions of personhood, but they are also vexed by such visions. Being a person is often a murky and messy business, and for me that’s the interesting part. In part, that’s also why I don’t myself do so much with sweeping contrasts like dividual/individual or egocentric/sociocentric or individualistic/collectivist. Instead, my thinking takes a somewhat different track, one which grows directly out of my fieldwork. There’s the impossibility of the people in my article ever being self-representing liberal individuals, but equally there’s the impossibility of their being good subjects of ostensibly more relational Ganda personhood. On this front, the book is an extended reflection on the question “what is a person?”: it explores this question alongside people who radically transgress expectations about personhood in Uganda, but probably everywhere in the world as well.

SO & HQ: The importance of Christianity, particularly Catholicism and Pentecostalism, in framing disability experiences is evident in your field site. You make the important assertion that you are exploring “the contours of a nonsecular, nonliberal politics of disability made possible by Ugandan Christian efforts” (447). While the focus on Christian institutions and practices might seem obvious given the Ugandan context, I am wondering how we might learn from your findings and perhaps expand this analysis beyond the Ugandan context. I am thinking here of how the charity model of disability, which finds its roots in Christianity, persists globally despite a turn toward rights-based disability politics. There is perhaps an assumption being made here that access to disability programs and resources “in the West” operates on a rights-based framework. However, once on the ground, we see that the charity model still operates in many places, such that programs and resources continue to be managed by religious organizations such as church communities. How might your findings actually complicate the notion of a homogeneous, nonsecular, and rights-based approach to disability politics in the West?

TZ: Perhaps it’s first worth taking a few steps back for readers who might not be familiar with disability studies and activism, which both rely on the language of “models”—the charity model, the medical model, the social model, and so on. I think the sociologist Michael Oliver coined the phrase “social model of disability” in the early 1980s (see Oliver 1990), but the basic idea was already evident in North Atlantic disability activism in the 1960s and 1970s (Oliver was part of this activism). The social model draws a distinction between conditions of minds and bodies, called impairments, and disability, understood as the stigmatizing and oppressive social construction of impairments. This social model is articulated in contrast with other models, like the medical model, where disability is understood as a biological problem to be treated medically, and the charity model, in which disability is merely a condition of misfortune deserving at best pity and help. The social model is an attempt to challenge these ways of understanding disability, while also politicizing disability, making it a marginalized identity that deserves rights and inclusion (the liberal version) or social justice and liberation (the radical version). Now, paralleling the interrogation of social and cultural construction (and ontological distinctions between nature and culture or society) that we’ve seen more generally in anthropology, disability studies scholars like Alison Kafer (2013), Tom Shakespeare (2013), and Christina Crosby (2017) have recently raised questions about the social model—for denying or downplaying real embodied experiences of limitation, pain, and difficulty, and for being insufficiently attentive to material and political-economic dynamics.

That said, the social model can be extremely useful, especially when it comes to pedagogy and politics. I’m all for what Gayatri Chakravorty Spivak (1988) called “strategic essentialism,” and you can see that in the article. But I don’t use the language of models. For me, alongside all the valuable recent critiques of the social model, there is another reason to hesitate, and that is just how schematic it is, and how it presumes stable, self-evident and clear-cut boundaries between different ways of understanding, experiencing, and engaging disability. On this front, the article is working against some of the tendencies of model thinking within disability studies. The efforts I describe could fit quite readily into the “charity model” label. To dub something charity model within contemporary disability studies is, however, to basically say “it’s cancelled” or “it’s dead to me.” Against that habit of thought, I’m trying to see what something “charitable” (and Christian, and paternalistic—the sins grow!) does in the world, what its material and social effects are—especially the fact that what or rather who it makes possible is foreclosed by a more palatable rhetoric of rights and self-representation.

As for the specifics of your question: I would never say that access to disability programs and resources in the West operates exclusively on a right-based framework. Nobody who’s had any dealings with disability services could say that in good conscience. Along the lines you suggest, I’d offer a modest plea for more analytic and political projects around disability that aren’t defined by the tidy contrasts of model thinking. I’d also call for resisting the assumption that the horizons of disability justice should simply be coterminous with individual autonomy and self-representation. One of the sites in my article, L’Arche, exists in North America and Europe (in fact, it was founded in France), and as you suggest, there are many religious projects around disability in the North Atlantic that mainstream disability activism would have problems with, but nonetheless these may be articulating ways of disabled being, belonging and flourishing that are worth taking seriously. As a committed fieldworker, I’m not able to say so much about what they’re up to elsewhere, but I think it’s high time we have more thick descriptions and theorizations of disability projects that are neither easily reducible to secular, rights-based efforts nor adequately characterized by one or another model of disability.

SO & HQ: This question stems from a curiosity with the politics of humanitarianism and dependency and the sorts of structures of feelings and ethics surrounding such terms. I found it interesting how you opened with a photo of Maimuna, challenging the “Euro-American critiques of inspiration and pity as problematic” (444) that you theorize in this piece. I draw my question from the act of appearing and the politics of representation that such acts allow. As we know, anthropology provides a number of genealogical routes for critiquing visual imagery and, more broadly speaking, the representation of others. In humanitarian literature, I am thinking of Lori Allen’s (2009) work on Palestinian politics of immediation, or Leslie Butt’s (2002) critique of the “suffering stranger” figure in anthropological texts. Similarly, feminist disability studies scholars such as Rosemarie Garland-Thomson (2009) have theorized staring, pity, and the disabled body. With these cannons in mind I wonder, what is the limit to this sort of radical (at least to the Western liberal) “right to appear” especially in a country that hosts countless white saviorist—and commonly Christian—nonprofit organizations and orphanages? Where I conduct my own research in northern Uganda, a rumor circulates about foreigners with cameras. People say that any foreigner found taking pictures of Ugandans does so for the purpose of selling the photos for profit in their own country (an allegation not entirely false, I might add). I ask then, what is the significance of one’s right to appear when the people taking, viewing, or using the photos do so for their own self-serving needs (which includes their need to “help” or “do good”) without enacting any real positive change to the lives of cognitively disabled Ugandans?

TZ: You hear those critiques of exploitative photography in central Uganda too, and as you note, the anxieties that foreign-run NGOs appropriate images of Ugandans for foreigners’ own benefit are rather on-the-nose. There is no question about the ethical and political ickyness (to use a technical term) of white saviorism. That said, what I found the most interesting, surprising, and provocative is Maimuna’s theory of the image, as well as her own efforts to co-opt me as a white person with a camera. Rosemarie Garland-Thomson’s (2009) book Staring, which you mention, is similarly provocative and even wonderfully perverse, since the whole book is a reversal of the dictum that your mother should have told you not to stare. Garland-Thomson’s book amounts to an injunction, “Stare!” Or rather, and less crudely, it theorizes staring and looking relations as means to encounter non-typical bodies and as the potential site of ethical and social transformation. Of course, I wouldn’t assume that either staring or appearing are inherently emancipatory; I’d rather think about particular cases and conditions.

There’s also a way in which this question turns its screws back on us all (to mix some metaphors here!), as anthropologists who make our careers, lives, and livelihoods representing others, even in the case of others who are “at home” or who exist in worlds where we are “insiders.” I think of that Joan Didion quip that writers are always selling someone out. How different are we from naïve or not-so-naïve do-gooders and their self-serving photos? Might we in fact be even worse because we ought to be self-aware given all we know about the politics of representation and political economy? Obviously, one rushes to start listing all the ways in which anthropology, or at least “our” particular anthropological endeavors, are in fact different and better. But I also think it is important that these questions should stick in the craw of anthropological self-righteousness—should remain abidingly alive and uncomfortable. At the same time, saying this in no way excuses us as anthropologists from thinking about obligations of solidarity and exchange and about what kinds material and social reciprocity we should cultivate in our fieldwork and writing.

SO & HQ: We’d like to link this piece to your previous work. How does this piece contribute to a “disability from the south” as you outlined so cogently in the Somatosphere article, “Disability from the South: Toward a Lexicon” (Friedner and Zoanni 2018)? More generally, how does this Cultural Anthropology piece fit into current attempts to contribute to a critical and decolonial epistemology?

TZ: A problem with much work in disability studies (and activism) is the fact that it often doesn’t acknowledge its cultural, historical, and political specificity—the ways that it is premised on a set of assumptions that simply don’t make sense for many people in the world. (And perhaps they don’t really even make sense to or for “us”—the idea of independence, for example.) Together with Michele Friedner I’ve used that phrase “disability from the south” to point to disability experiences and politics that unfold in ways irreducible to disability politics in the North Atlantic. I wouldn’t, however, want to substantialize “the south” bit, as if the south were some unified whole or essence, or some straightforward obverse of the north, or some space of radical alterity. (Never mind the maps: Uganda sits on the equator; shouldn’t it be the center?) More than anything, “disability from the south” is intended to be a placeholder and a provocation for disability engagements that arise from other “locations of disability,” to borrow and tweak a phrase from disability studies scholars Sharon L. Snyder and David T. Mitchell (2006).

Relatedly, this is also very much what is going on when, in the article, I write about the “nonsecular” and the “nonliberal”: I don’t mean anti-secular or anti-liberal; I mean something that needs to be understood on its own terms. Even the use of “non” is ultimately flawed and unsatisfying here, but conventions do have to signify—that is, be conventional. Further, this doesn’t require celebrating or romanticizing so-called nonsecular, nonliberal engagements with disability. It only requires reckoning with the real social and material work they do in underwriting disabled lives and worlds that wouldn’t otherwise exist in Uganda—lives and worlds which are actively foreclosed by the demands of the rights-bearing, self-representing individual, in the end the gold standard in mainstream Euro-American disability politics. Obviously, a big inspiration here is the work of feminist anthropologists like Marilyn Strathern (1988) and Saba Mahmood (2005), who worked to parochialize dominant assumptions about freedom and flourishing as imagined in feminist theory and activism.

On the question of critical and decolonial epistemologies, there are vibrant and important conversations now being had about the parochialism, and frankly whiteness and maleness, of what counts as theory (read: Theory) in books and syllabi and disciplines—about the hierarchies of knowledge and the exclusions that even supposedly critical scholarship reproduces. In the book I’m working on, an engagement with conversations about personhood within African philosophy is a major focus, including the important work of Kwame Gyekye (1992), Bernard Matolino (2008), Ifeanyi A. Menkiti (1984), Mostamai Molefe (2019), and Henry Odera Oruka (1988). And when it comes to the lives of people whose personhood is in question, I take particular inspiration from debates about ideas of humanity and humanism within contemporary African American studies, especially in the work of Sylvia Wynter (e.g., 1984, 2003) and the intellectual and political conversations that Wynter’s work has made possible (e.g., Weheliye 2008). Tracing, cultivating, and making manifest different kinds of canon is a pressing intellectual and political endeavor that still doesn’t define enough anthropological work.

And then in addition to the politics of the canon, it is perhaps just as important for us as anthropologists to signal what we learn with and from the people with whom we work. I tried to signal that in this particular article by foregrounding what I learned from someone, Maimuna, who demands to appear, thus providing the insights that catalyzed the analysis. The fiction of the virtuosic, isolated thinker is another pervasive yet pernicious individualism that we students of social life shouldn’t perpetuate. What’s often most interesting and challenging about anthropology is not what the ethnographer discovers or decodes, but rather the critical and imaginative capacities that are enacted and embodied by the people with whom we work. This extends to the level of cultural commonsense, and which regimes of commonsense do or don’t define our theory. Though I use Hannah Arendt (1981, 1998) to name some dynamics of social life in Uganda, what Arendt is putting forward as a challenge to Western metaphysics that devalue appearance is actually rather obvious in Uganda. And yet that commonsense remains challenging and generative for theorizing and activism around disability as it unfolds within Euro-American contexts. And here I should signal one last debt: noting that a seemingly radical move in North Atlantic social and political theory is actually cultural common sense elsewhere—this analytic move I learned from Julie Livingston’s (2008) wonderful discussion of affect theory and Tswana sensibilities.


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