During the current Covid-19 pandemic, much attention has focused on adult caregivers of young children. Flipping the focus, this episode focuses on children's responses and experiences during infectious disease outbreaks. How do children communicate care to sick family members?
Dr. Jean Hunleth and Dr. Chelsie Yount-André discuss Hunleth's research on children's caregiving amid Zambia's tuberculosis (TB) outbreak and trace parallels with today's Covid-19 pandemic. They look at the role of proximity, recognizing the different ways children offer care, how to discuss disease with children and problematize the idea of disclosure, and the moral valences that become attached to disease and the people who suffer from them—particularly around privilege and vulnerability.
Jean Hunleth is an assistant professor of surgery and anthropology in the Division of Public Health Sciences at Washington University School of Medicine in St. Louis, Missouri. Her book Children as Caregivers: The Global Fight against TB and HIV was chosen as the winner of the 2018 Elliott P. Skinner Book Award. She holds a PhD and an MPH from Northwestern University.
Chelsie Yount-André holds a PhD from Northwestern University and is currently a postdoc at the Université de Montpellier, France.
Chelsie Yount-André conceived this episode, and Beth Derderian produced it. Special thanks to Jean Hunleth.
Musical intro and outro: All the Colors in the World by Podington Bear.
Children's Laughter by OBXJohn.
Logo designed by Janita van Dyk.
Evans, Meredith, and Janita Van Dyk. 2019. "Drawing Care with Jean Hunleth." Supplementals, Fieldsights, August 22.
Hunleth, Jean. 2017. Children as Caregivers: The Global Fight against Tuberculosis and HIV in Zambia. New Brunswick, N.J.: Rutgers University Press.
Hunleth, Jean. 2019. "Zambian Children’s Imaginal Caring: On Fantasy, Play, and Anticipation in an Epidemic." Cultural Anthropology 34, no. 2: 155–86.
Kim, Jim Yong, Paul Farmer, and Michael E. Porter. 2013. "Redefining Global Health-Care Delivery." The Lancet 382, no. 9897: 1060–69.
Orellana, Marjorie Faulstich. 2009. Translating Childhoods: Immigrant Youth, Language, and Culture. New Brunswick, N.J.: Rutgers University Press.
Yount‐André, Chelsie. 2016. "Snack Sharing and the Moral Metalanguage of Exchange: Children's Reproduction of Rank‐Based Redistribution in Senegal." Journal of Linguistic Anthropology 26, no. 1: 41–61.
Yount-André, Chelsie. 2018. "Gifts, trips and Facebook families: children and the semiotics of kinship in transnational Senegal." Africa 88, no. 4: 683–701.
Lynda Barry's Six Minute Diary
St. Louis American article on Covid-19 in St. Louis
[AnthroPod theme music]
Chelsie Yount-André [00:13] Welcome to AnthroPod. I'm Chelsie Yount-André and I'll be your host today on this episode on children in the time of coronavirus. I'm speaking with Jean Hunleth, the author of Children as Caregivers, and a medical anthropologist at Washington University in St. Louis. Jean’s work on Zambia focuses on tuberculosis during the AIDS epidemic, foregrounding children and the care work that they provide for sick relatives. Emphasizing children's experience of illness, Jean not only draws attention to young people's agency and vulnerabilities when surrounded by infectious disease, but she also shows us how focusing on children's perspectives urges us to rethink illness the public health measures that are aimed at managing it and the social impact of the disease in our lives. [1:02] Rereading Children as Caregivers in what's now our fifth week of lockdown, Jean’s words took on new significance. In the past few weeks, the news has given us all a sort of crash course in epidemiology and we've picked up pieces of health care workers’ specialized vocabulary: concepts like incubation period and PPE are now shaping our visions of current events and the influence with the pandemic will have on our lives—and those of our research participants in the future. So much of what we read about this pandemic emphasizes all the ways in which this event is unprecedented. But in addition to making the familiar strange, as anthropologists we’re also skilled at finding continuity in contexts of change and vice versa. So in our conversation, I asked Jean how her work might help us think through the coronavirus: both the ways that the pandemic is impacting our field sites or what we know of them through WhatsApp check-ins and media reports, but also how can the perspective of children in Zambia help us to think about our own experiences of the pandemic? So now I want to ask you to tell us a little bit about your work on tuberculosis in Zambia.
Jean Hunleth [2:01] Yeah so I first went to Zambia in 1999 as a PeaceCorps volunteer, then stayed for a while after that to serve in a more supervisory role in the Peace Corps and in program management of the UN World Food program. But this time period that I was there in the late 90s and early 2000s, it was a very particular moment in Zambia's history when there was no widely available ARVS—antiretroviral—treatment for HIV, and when, because of the HIV epidemic, TB rights had grown exponentially from what they had been before the epidemic. And at the same time international policies had really gutted the health care system and it was hard to deal with the dual epidemics. Also in the late 90s, Zambia’s national TB and leprosy program had lost its external funding and the country ran out of TB medication. So that's all to say that I had gotten there at a time when I wasn't working on TB, but it was impossible not to witness the effects of TB on the health care system and on families, and including families that I lived with as a Peace Corps volunteer. And had also gotten close to during those years. So I was very attuned to the effects of tuberculosis in the country prior to actually studying it. [child vocalizations] My book Children as Caregivers picks up at a different point in Zambia's history—it's slightly later. I carried out the research for that between around 2004 to 2014, but really most intensively, as you see in the book, during 2007 and 2008. [3:38] During that time period—it was a very particular moment in the country. HIV and TB treatments were becoming a more regular presence throughout the country due to some pretty significant shifts: there was a large scale rollout of no cost antiretrovirals for HIV, which was happening around the world and in Zambia. And there was in Zambia a recommitment to TB treatment which was reshaping the way treatment was given, and the global health funding streams for tuberculosis were expanding and changing substantially. New people like the Gates Foundation were getting involved in TB prevention and control. [4:34] But what I’d say has really tied my interests through those years of Peace Corps and the writing of Children as Caregivers and even now is my interest in learning how children experience and manage health within specific sociopolitical contexts. And my concern with how children's actions and meaning making are largely ignored in health programming. So I think TB is a specifically interesting case for that, um, and as I try to show in Children as Caregivers there's a lot at stake and ignoring children even in epidemics where the largest number of sufferers are adults as in tuberculosis.
CYA [5:17] Mmmhmm. And Covid-19.
JH [5:19] And Covid-19. Right, exactly.
CYA [5:21] So from there I wanted to ask you if you can describe the TB outbreak you were watching in Zambia relative to what we’re seeing with the coronavirus. So they’re obviously very very different diseases but I'm wondering how this comparison might help us think through some of the social dimensions of the current pandemic.
JH [5:39] Right yes. They’re obviously different in many respects, clearly, but there are a lot of striking similarities. They're both spread through the air, most basically, and so the advice on limiting proximity to people who have active TB disease or Covid-19 have been very similar. The concerns with limiting proximity to people who may have active TB disease or Covid-19 are also similar. I think what also is similar to me and thinking about it for me, is the real need for widespread testing to limit the spread of both of them. That's very similar and we're hearing lots on the need for testing. And also a lot of the frustrations on the ability not to get tested and that was something certainly I was seeing the tuberculosis epidemic in Zambia. [6:22] The unavailability and inaccessibility of testing sites, even when a person assumes that they might have TB because other people in their family had TB, the inability to get tested for it . . . so that's very similar. And we're seeing a lack of widespread testing here, certainly in St. Louis, uhm, the testing sites had been skewed or had been skewed to particular neighborhoods as well. There's so many similarities, I guess I’d mention a couple more. [6:53] The, the early messaging of “anybody can get the disease, the disease doesn't discriminate,” has been very similar to, to TB and also HIV. And it's true that no one is immune, but this messaging really is erasing the social determinants of health and the injustices that shape exposure—that shape access to health care and how medical professionals treat particular persons once they are in the medical system . . . or once they come. Or the histories of how people have been treated. We’ve seen this bear out in St. Louis with the Covid-19 deaths here. [7:31] In relation to TB, you know, I think it's widely known that largest burdens of the disease [children’s vocalizing] are in high density neighborhoods, in low income areas, in particular countries . . . we don't see TB really here in the USA anymore, though it had been here. [7:57] And these are places where people do not have the means to adequately protect themselves from exposure, and where, as we say the staff, stuff, and systems to manage this disease aren't sufficient. So I see very similar discourses every morning around children, and we mentioned—you mentioned before, you know, Covid-19 and TB are affecting older age groups much more than children. [8:37] And so there's this other narrative of children as carriers or vectors but not as sufferers. I think that's, you know, that's a little harmful in many respects. One in that, it makes us not attuned to when children are sufferer—
CYA [8:55] Yeah—
JH [8:56] —of these diseases and how that's happening and their treatment. And then seeing children as carriers or vectors is just really disturbing to me because it's reductionistic and it takes attention away from how they are humans who experience the disease.
CYA [9:08] Your work foregrounds children's caregiving activities that are often overlooked in scholarship. But in the case of coronavirus, our vision of what kids' care work, what kind of care work they're doing is really difficult to access right now. But I'm wondering how this perspective has kind of shaped what you've been reading, what you've seen, and where are you seeing children's caregiving activities right now?
JH [9:30] Chelsie, I see children's caregiving everywhere, to be honest, not just in Covid-19. It’s all over the place. But I say this is also true of TB as well: children's care work is extremely hard to access because children are typically not giving care in hospitals or public spaces where we can see it, though that we know that they do. There's work on a children as language translators in hospitals and stuff for parents. But, but most of the care work, as all care work, happens in homes away from public view and so it's hard to access. But for children in particular, we have this view of how here happens or ought to happen that shapes our ability to see children's care giving, I believe. I would say that especially here in the US, although also in Zambia, the predominant assumption was that when children give care, they're not receiving it.
CYA [10:27] Hmm
JH [10:29] And so it's really, I find even proposing the idea of studying children's caregiving gets really dicey here, because children who give care are seen as, as victims and something that we need to stop . . . where I would argue that all children are giving care, and there are certain types of caregiving where they need much more support in those situations. But also there is, you know, care—I see care, my own son who's four giving me care in ways that I don't think are problematic at all.
CYA [11:15] Yeah so like, children giving care doesn't necessarily mean that parents are being negligent or that they're not being cared for, but that it can, they coexist.
JH [11:24] Yeah exactly, exactly and that's the problem too, you know. We feel very guilty as parents when we see children giving care. So parents are blamed for everything, right.
CYA [11:31] So as I was reading Children as Caregivers in the midst of this pandemic, it was almost eerie how many of your observations appear to directly relevant to the current context. So maybe the most striking was your emphasis on being closer. So you describe it as “one of the central paradoxes of infectious disease”—saying that transmissibility creates conditions in which proximity is desired and necessary but also feared. So can you speak a little bit about this theme of wanting to be closer—how it emerged in your work in Zambia, and can you talk about it as compared to this kind of desire and fear of being closer that we're seeing everywhere in the case of Covid-19, and the kind of global lockdowns relative to the disease?
JH [12:08] Yeah—being closer—I talk about that throughout the book but specifically in the introduction, and I was really struck during my research with the phrasing, of wanting to be closer . . . and the continual answer to my question about what had changed in the children's lives or in their, their family members’ lives because of illness in the household, or because of TB. At first, I really thought that I was being a bad ethnographer, really, like oh I'm asking bad questions, I keep getting these vague answers, I need to be more specific. But I think what I really learned was that well, one, I had assumptions going in about how people would answer that. And two, being closer was really at the heart of it. I, I use being closer to get into all kinds of things in the book.
CYA [12:53] So just to clarify, when you were asking what had changed about children's lives since there, when there was TB in their house, [children in background] what did they say about being closer?
JH [13:02] No, that was the answer.
CYA [13:03] The answer is—
JH [13:04] —I just wanted—I wanted—I want, I was always close, I wanted to be closer, I want to be closer. Or talking to parents like, how has your child's life changed? “Well she wants to be closer to me.” Physically but I think also emotionally and socially closer, as well. It was one of those recurrent themes in ethnographic fieldwork, that, it just vexes you and it's hard to understand, but then it becomes more evident longer you're there—and particularly through watching children trying to get close in many ways, including when they were separated running away from the house they were separated into. Or their attempts to get the attention or be able to remain in a household.
CYA [14:06] Mmhm, yeah. Trying to stay close to their parents despite the disease.
JH [14:10] I link that also to global discourses on childhood too, in the book, that had really come in to the area where I worked on, you know, children whose parents die or their social parents who die, become street children and then they become orphans. And the children were really aware of these discourses and they certainly, in my opinion, shaped their actions and how they attempted to remain socially relevant within their household.
CYA [14:50] Yeah so being closer is also just being seen.
JH [14:56] Yes, being seen, being loved.
CYA [14:57] And I was, I was struck by how that seems there seems to be a parallel in what we're hearing about the way that kids are responding to Covid-19, and how kids that—they're not separated from parents necessarily who have the disease, but just being in this lockdown condition, creates this . . . they're almost drawn to being with their parents. You hear about kids going into their parents’ beds at night and things like that. So I thought that that was a really interesting parallel between what you were hearing from kids in Zambia who wanted to be close to their parents, but also kids now in the lockdown.
JH [15:37] I see this in my own house, you know, my son who wants, who comes into our bed and who wants to be with me all the time and . . . And on social media, you hear parents saying that their, their children are spending more time with them. The lessons I would take from my work is that these are attempts one, to be seen because of the uncertainty, and also to be able to communicate about what's going on as well.
CYA [16:04] Yeah . . . and it can be hard for parents because we're with them more than ever before, in a lot of ways, since schools are closed. We’re with them, kind of, all day every day, and yet they really need some . . . some focused attention.
JH [16:13] Yes, oh my goodness yes. All the time. [both laughing]
CYA [16:17] So the second thing I wanted to ask about is just the title of your book: so Children as Caregivers. You speak a lot about the subtle actions that you characterize as care but that would go overlooked in most analyses of childrens’ role in managing illness. And I wanted you to speak a little bit about what you describe as care, and especially the concept of imaginal caring that you develop in your recent article in Cultural Anthropology.
JH [16:27] Right I see care much more broadly than, I think—especially children's care—much more broadly than I think it's been conceptualized in the, at least the child care, literature. And one of the aspects, to return to being closer, of children's care that I was really seeing was the watchfulness of being close, to know when to take care. So the flexibility of like, children's care and trying to identify what people need, but through proximity, through being close, and, and observing them very carefully.
CYA [17:05] And the worry that adults, and other doctors, wouldn't be doing it the way that they would be doing it, if they were with their parents, right?
JH [17:12] Absolutely, and, and children typically have more ability to do this than adult caregivers who are also going to work or, or going out to do certain things. Imaginal caring is something that took me a long time to get to . . . as is obvious in that I just published it this past year in my Cultural Anthropology article . . . and that was really my grappling with what children were doing with fantasy, and with image, and how that related to care. So, particularly during times of separation from people, or when times of—and I'm not talking just separation into the hospital, which certainly I saw a lot more caring through fantasy when childrens’ loved ones were hospitalized but also through other separations. [18:07] Like typically, the children in the area where I worked would sleep in the same bed with caregivers or guardians. And this was due both to need, because housing was very limited. But it also was really hard on the children when they were kicked out of beds because of the disease, and the loved one not wanting to spread it to them. And so there were other subtle separations within the household. And so children had to get creative, to find ways to show their love and their care for people when they couldn't do it in the typical ways. And I really talk in that article about how children were giving care through their drawings. I . . . drawing was one of, one of one of many methods that I used to understand how children were envisioning their lives. And I was really struck by what children were drawing for others, and how they were drawing this in the presence of others, in ways that were really meant [pause] to help those people recover [19:23]. So just to give a concrete example, like drawing something, an orange on a page, and the explicit desire and saying that you're, they were giving that orange to the person who was sick, to help them.
CYA [19:39] What were some other things that they drew to, as part of what you say is "imaginal caring"?
JH [19:44] I start that article with a young boy who I call Gift, drawing himself flying into the hospital to get his baby sister, and carrying her out on a balloon to bring her back so that he could be in close proximity to watch her, watch what she needed. And then he was fighting off a snake, envisioning of how he was going to care for her in the future. He drew this at a time when his sister was hospitalized for TB, but also when his grandmother, who was his primary caregiver, had just been diagnosed with, and was—and they had just, had just moved with her to my research site to get better care for her TB. [20:29] And he drew this in the presence of her, too, and so there was a lot that was going on in that communication . . . we were—when he was drawing this, I was talking with his grandmother about her trajectory of getting diagnosed and deciding that she needed to get care in the city, and coming to the city with Gift. So aspects like that. There is—I talk about the airplanes, [child vocalizing] that some boys in the study were—uhm I hear, I hear somebody in the background.
CYA [21:01] You hear my daughter in the background, so that's part of working in the times of coronavirus with children at home! [both laughing]
JH [21:09] Right! Right. My guy has been very quiet. But trying to get your attention, right, when your attention is on other things. This is, the image of the airplane is, is also one that I talk about in that article where, who I call Paul, he drew his, he drew an airplane that he was going to fly as he when he got older and part of his drawing about giving care. And he did this in the presence of his father and it really was in the end . . . this this airplane recurred in his drawings and his brother’s drawings. And I kind of analyze and interpret that it really was an attempt to give his father hope for the future. [21:55] His father was really losing hope. His father has died now. And TB, the TB was disease was really hard on his father and taking the medicine was really hard on his father. And they were doing all sorts of things to kind of keep up his hope for the future, and including, like insisting that he took his medicine. But also I really see these drawings as entering into that [22:22] effort to help him reimagine what a future could look like without TB. In a way that he was showing, I will care for you in the future, cause I’m going to get us out of poverty. I'm going to be a pilot for Zambia Airways and this is my airplane and these are my dreams, I still have them.
CYA [22:40] And we should say that you've made these drawings of chi- the children did for you available online.
JH [22:45] Yes, I have. In fact, I came to imaginal caring through that online project. I had been interested in fantasy, but I also didn't know how to talk about it . . . because we're still trying to, like, get our handle on children's caregiving. And in very, kind of, material ways, although I think that imaginal caring is a very material way—but in things like, you know, sweeping the house, cooking, nursing, and stuff like that. And it's really hard to figure out how those fantasies fit into that vision, how to write about them [23:23]. And so when I was, I had promised an online gallery in the book, so I had to do it, I put the link in the book as it was going to press and I immediately regretted it. No I didn't regret it. I'm, I'm very happy that I did it, but it was an extremely large amount of work. [23:41] So I had to go through all of the drawings. I didn't know how I was going to put them online, and I started noticing all the fantasies in there. And that's what led to the article. But the online gallery, how I decided to do it, was set it up as the story of the book through the children's drawings. So basically, I went through the book and I have page numbers associated with the drawings, even if they're not mentioned on the page (which most of the time they aren't), and so my hope is that you could read through that online gallery and get a sense of what the book is like through the children's drawings. A different sense, a very different sense . . . I’d be interested in those dual readings of it. But that's my hope for that gallery.
CYA [24:31] So I want to loop back to the theme that you mentioned earlier, talking about the ways that we interpret kids’ care and the kind of guilt that parents might be feeling, and I want to relate that to what you were just saying about imaginal caring. So you just mentioned how they're trying to kind of encourage their parents, they're trying to actually give care to their parents through a drawing, and so by redefining something that we might otherwise analyze in terms of fantasy or play, by redefining it as care, you're talking about how they're doing something for the parents. But you also develop how, what it's doing for the children. And so I'm wondering about if you could elaborate a little bit on that piece of your argument, and then relate that to the ways that we're seeing our kids worry, and the way that our kids are kind of anxiously watching us, and noticing our stress and how we might be able to gain a different perspective if we think about that in the terms of care that you’ve introduced. The first part just being, what does it do for kids, to be engaging in this type of care?
JH [25:31] Right, I think it’s really important for them to be helping in certain ways, to be caring in ways. And so in that article, I talk about the imaginal caring as I would say, any caring, is not selfless, you know it's aimed at another—but also it's for, it’s for the children in a way that, in many different respects. And I think those would vary depending on the situation. In terms of Zambia, it was really trying to remain socially relevant, and also working through what was going on.
CYA [26:08] So as kids are working through what's going on through these acts of care, how does that maybe help us think about when we see kids anxiously looking at us, when we’re talking about the coronavirus and talking about the kinds of, the way that lockdown has changed our lives and things like that?
JH [26:27] I think we need to release some of our guilt, you know, as well. Let me, let me give a story about some imaginal caring that my son gave to me, and maybe we can think through it through that story. I was talking about imaginal care with another class that had read my article a couple weeks ago, so we were already in the “stay at home,” courses were already online [26:52]. Cultural Anthropology developed a really nice resource for reading my paper, which is called “Drawing Care with Jean Hunleth” [see link below] and we had planned on, the instructor and I had planned on my coming to the class and doing these exercises. And I was really excited about something more interactive, and drawing-based, with the students, and I was trying to figure out how to move that on line and what I decided to do was Lynda Barry’s Six Minute Diary. [27:25] Have you heard of this, Chelsie? It’s six minutes, where you divide a piece of paper into four sections and you write, write and draw about what happened yesterday in the four sections: what happened, what did you see, what did you overhear being said, and then a picture of yesterday, drawing picture of yesterday. [27:47] And so I did this with them at the beginning of the class and I didn't know what I was going to write or draw, and I ended up drawing a picture of my parents’ house and me outside of it at my car. The day before I had bought some groceries, I'd gone grocery shopping and got groceries for my parents, who are eighty-seven and eighty-two and are not going out. And I was really kind of excited about seeing them through the window, and I wanted to see them through the window, and I dropped it off and I was peeking around. [28:19] And I couldn't see them and so the drawing I had made was me standing sad at my car, looking like, looking up at their house. And the next day, my son Max came into my office, and he saw that it was still on my desk. So he asked me about it, and I said, well this is when I went to Grandma and Grandpa's house, and I dropped off their groceries, and I was trying to look at the window, and I was kinda sad because I couldn't see them, and I couldn't go in. [28:45] He asked me to draw himself going in the front door of that other house, and so I did that. And he said draw, draw mommy and daddy going in the side door, which is the door we always go in there. He’s like, because you guys are too big, you’d break the front door. Which you know, clearly would. [29:02] And then he took it, and because it was like my work time, he took it down to my husband, and told him to put it on the refrigerator. And he returned throughout the day to that drawing, and to talk about it with me, and then at one point kind of out of the blue, he was like, can we draw ourselves going into Grandma and Grandpa's house, and can we draw Grandma and Grandpa inside of it [29:23]. There’s part of me as a parent that wants to be like, oh god, what are you doing but there's the other part that was like, oh he's actually I think he's giving me care, and I need to accept that care. And also this this visual became a really important thing in our household, for talking through what was going on, and our feelings of wanting to get close to people that we were separated from. It helped us move through it.
CYA [29:54] Yeah.
JH [29:55] At that moment. And I think that's what images can do for us, and between children and their parenting of family members.
CYA [30:07] Yeah in your article and in your book, you do a really good job of, you have a quote that says: “constraint and separation demand creativity.” You do a really great job of showing how kids have agency, of course, but they also have limited agency; and with this limited agency, it pushes them to use very creative ways to connect and creative ways to care for those around them.
JH [30:30] And if we’re attuned to that, I think we can see that all around us now. I think about our walks around our neighborhood and I've been obsessively taking pictures of all the chalk drawings. So yeah, that are throughout the chalk messages you know . . . I've seen such touching messages to people that, I don't know what they live in the house or, or what . . . but you know, “Happy anniversary,” or and . . . who knows if a child did it, an adult could have done it. But that's the thing about imaginal caring, I don’t think it’s limited to children. Or “I love you Grandma and Grandpa,” was one that I saw.
CYA [31:04] So that brings me to the question of how, and how much, we are or should be talking to children about the virus. So now there's tons of resources online guiding adults on how to talk to their children about the virus and these all kind of treat disclosure as a single act, like a discussion in which adults impart information on children. You argue that this kind of obscures the many ways of knowing and communicating about illness, so you advocate for an extreme broadening of definitions of disclosure. So could you elaborate a little bit on that, and I wanted to think about how that might apply to the ways that we're talking to kids about Covid-19 right now.
JH [31:43] Right I think we put so much emphasis on disclosure as an event, or disclosure as a person telling to another, when I really think that disclosure happens or communication about things like TB or Covid-19, really happen in small acts, in the daily ways that we communicate, rather than sitting down and saying, you know, there is this disease and it does this and this. [32:16] Now there's a place for that in certain respects, but in my work in Zambia I was really struck by, and I guess surprised but not surprised, when I started working the households and introducing my research. And the enthusiasm, interest in my research among adults, but also the wariness of what my presence would mean, in terms of me disclosing to the children that they were suffering from tuberculosis and by relation, really, HIV. Though not every—I didn't ask about HIV in my study, that wasn't part of it. [32:52] It's assumed often socially that a person who has TB has HIV, and people go to lengths to show that they don't, or to avoid discussing TB because the social assumption is that you have HIV. So these two were highly linked. So I was given the green light to talk to children and see if they were interested in a study, but told not to talk about it in terms of TB. So it, it already became a point of interest in how this commu—to me, how this communication was happening. Now—
CYA [33:26] Because the children, they hadn't told the children that their relatives had TB?
JH [33:31] It's very confusing, Chelsie, because, I took notes. At certain times people would say that they had disclosed, and then later said they had not disclosed, or said they had not disclosed, so it was really hard to know and I think that's the thing about disclosure too . . . because it's not necessarily a sitting down. And so you can disclose and not disclose all at the same time, and so it was, it was very confusing. And the children were not going to mention TB in the households and I remember it being kind of a point of, Oh my goodness I'm studying TB and I’m not talking about it, I have no idea what the children think about you know about TB . . . [34:13] But then you know, kind of paying attention to all the are there ways of communicating show that disclosure, non-disclosure, whatever we want to talk about it—disclosure doesn't mean communication is happening, and non-disclosure doesn't mean it's not. So I was really carefully looking to all the ways that children and adults were actually communicating about disease, which was through material objects, and talking through changes—
CYA [34:43] What do you mean by communicating through material objects?
JH [34:46] Oh, so like, yeah. Good point. Through medicines. I mean medicines weren't hidden for TB, they were a large part of the family's life because medicines had to be taken every day. They were a way of talking about illness without—in a way that was encouraging, rather than discouraging. Because saying someone has TB could be very discouraging to them, because it has connotations of death and social isolation. But taking medicine, on the other hand, has—is associated often, especially by the children with recovery and—
CYA [35:24] Positive action.
JH [35:26] Positive action, and kind of, control of what's going on. So through talking about the medicines, through talking about foods and special foods there's a lot of food talk in relation to illness.
CYA [35:41] So I thought what you said, about it being really discouraging for kids and for adults, is really interesting. And I liked the concept you were discussing about thinking too much, about how people in Zambia worried that both children and adults, if we speak too explicitly about this disease, it'll make them think too much about it and that can make them lose hope and feel isolated. And I thought that was really interesting relative to a struggle that I have in terms of Covid-19, and I think a lot of people share, in terms of how much to inform ourselves and when it becomes obsessing over the statistics, or the most recent articles, etc. So can you speak a little bit about this idea of thinking too much, and the ways that people understood disclosure relative to how people are thinking about the disease, and what's healthy and what's not going to be a helpful way to think about the disease?
JH [36:35] That's such a fascinating question. I too struggle with that. It seems to me that what you're asking is really, how do we communicate about hard things with one another and particularly across generations, in ways that help us move through the experience and not get stuck in it? Or get ourselves stuck in it, or get other people stuck in it, and particularly not our children, right? So, so, first thing that you mention was this whole thing has made many of us consider how to manage our information, how we're not managing our information, how we should manage our information. And I agree fully with you, that it's so hard to know when we are informing ourselves versus obsessing. [37:29] It's, you're right, the line is so blurry. The information changes so rapidly. Things that came out just a day or hours before can feel really out of date, so hard—I haven't figured that out why some days, I obsess over the information, just like, scroll through Twitter . . . other days I really ignore it. But the other part of your question, which I think is really interesting and related to my book and in my interests, and I think is really critical, is how do we incorporate the information we're receiving into our relationships? [37:53] And knowing that it has an effect on us, and that it will have an impact on others. Especially in terms of children, thinking about communicating with children, this gets even harder, because it's not always easy to identify what they already know or need. Children aren't going to say what they know or need all the time, you know. We have to look between the lines for that, and we often as adults assume that children know less than they do.
CYA [38:18] Yeah—
JH [38:20] —Um when they know a lot, or that what children need is different than what they actually do need.
CYA [38:26] Yeah [overlapping], where it makes me think of that great point you make about how kids are agents, but they're not super agents. We're wise to remember, you say, and then, but none of us are. And I think that that's a really beautiful line because kids, we don't know how much to tell them or how much to disclose but that's also partly because adults are also navigating these same questions right now and it's not obvious for anybody. So thinking about what kids know and need is that much more complex when we're trying to understand what we know and need to know.
JH [39:00] Absolutely. Right.
CYA [39:03] So then from these questions of disclosure and adult guilt, I wanted to ask you about the moral discourses and the ways that these are shaping our visions of illness, and where we place blame. So in my work I think about economic moralities in Senegalese families, so the ways that moral discourses are shaping intergenerational reciprocity, and how somewhat paradoxically, discourses of value can kind of increase exclusion and reinforce inequalities even within families. So then, these moral discourses, I saw in your work a kind of similar theme, especially when you're talking about the narratives that you encounter in Zambia of a breakdown of a moral order. And so I wondered if you could speak a little bit about that, and how this moral language shapes the way that we place disproportionate blame on certain people in society.
JH [39:52] I think if you look at the numbers, epidemiologically, the TB rates were pretty steady for decades, about 90 persons per 100,000 and then in the 80s, there's just this exponential rise, where in a place like George, where I did my research, where the book is based, there were no good estimates. So the estimate was, at the time that I was doing the work, was that it was 800 in 100,000. So that's way more than, than what was the official, Zambia-wide number. But that speaks to the inequities and injustices in the area. So people were really grappling with why, like why, has this rise in disease happened and why are people dying more? And that was the 80s, a time where HIV came in and HIV weakens the immune system, right? And so TB was really just having an even greater impact on people when they had it, and people are getting sicker and dying, and there was no medicine. [40:47] And so this lends itself to, kind of, trying to look at the past and what was different. And certainly there were people saying, well the government did a better job in the past, but there was a lot of blaming of particular groups. Like women and youth, in particular. “Women aren't following the rules.” “Youth aren't listening to their, their elders and their doings, and they’re drinking too much, having too much promiscuous sex, and they are exposing them and us to it.” [41:34] And what I'm really interested in, I mean, one, is what—we're seeing this in Covid-19 for sure, but how the notion of childhood figures into this blame, right. Where children as victims of women who did not follow the rules, or, how youth are doing things that are affecting our children, cause youth could be the parents, you know. And youth is a category that can extend quite long . . . I've been fascinated how childhood is used in these ways to cast blame—and then how that enters into relationships as well. [42:08] I talk in the book about one woman who was living with her, Munyongo, who was living with her young daughter Serafina and how she didn't want people to blame her, or think of her differently, and she knew that she was going to die. I mean obviously she didn't want to, but she was preparing to die and she was preparing her daughter for what would happen after that. And she saw in her family, her sister who had died and how the children were very much associated with her sister’s, kind of, they assumed the moral discourse about her sister and she wanted to protect her daughter from that. [42:52] And so she isolated herself and her child from care, from the family, because she didn't want them to have these ideas that she couldn't, she had done something to cause her death, she didn’t want those to map on to her, her daughter, who would be associated as like, an AIDS orphan. And so she did all kinds of things to counteract that.
CYA [43:18] Mmmhmm. So someone who's already vulnerable, kind of, taking an agentive act to try to separate herself—but which is also simultaneously cutting her off from sources of support that she may have otherwise been able to access. Yeah . . . I'm also wondering about how these insights about this kind of moral language, and how it's shaping the way that people are engaging with the illness, and with care for the illness, how that might relate to what we're seeing with the Covid-19. So some in some cases it's kind of explicit like you mentioned, the impact that it has on racial minorities and the high rates of infection . . . and we see a lot of moral language focused on, why do immigrants and black people get Covid-19 more often, etc. [44:03] But we also see more, kind of, subtle moral discourse is related to, just putting unequal pressure on people. So I'm thinking about like, these kind of motivational pressure, like “you didn't ever lack the time, you lacked the discipline” that are just completely overlooking the fact that lockdown is being experienced by people in drastically different ways. So, parents, clearly, are not bored staring at the walls, like some of the things that we're seeing on Facebook are saying. And you know the difference, we've also seen things about the differences between the way that men and women are forced to deal with this. So I don't know if you had any thoughts about the kind of moral language about disease, and how that shaping our experiences of the current pandemic.
JH [44:44] Yeah yeah, this idea of being bored. When can I be bored? And the writing your novel, yeah. I think we all expect ourselves to be super agents these days: we can get work done, teach our children, we can care from afar for our parents, and others, and and and and and and and . . . even in, even as like, we can react to these kind of “King Lear in quarantine, get the novel done”—we still put those pressures on ourselves. I think that's part of the reason why I, and others I know, love that genre of writing that’s coming out, like, against productivity and against doing a good job of putting our classes online, against doing a good job of homeschooling. [45:32] As much as that's the counter reaction . . . but it is so ingrained. As you said I talk a lot in my work about children's agency, but I also talk against the notion of children’s superagency. I really see this idea of a superagent person or child, as like this cartoon character in a superhero cape I see myself trying to enact these days. When we as researchers, as people, write about and think about agency in ways that assumes we’re able to overcome our constraints and vulnerabilities through our individual action. [46:03] I think there's a lot of pressure in the US really to do this, with the discourses and stuff. But I guess my argument for children extends to this context too. It's really an argument to attend to the broader social, political, and economic processes that structure our lives—like we really need to keep those in view, to help us release our guilt. But that's not enough. I think we also need to direct our anger not at individuals or in ourselves, but to systems and structures that have to, have to change. They have to change, and for those of us who have some power, whatever power that may be, to put pressures to systematic—system level changes, rather than focusing on, I don't know, individual level behavior changes as like the answer to this . . . of getting a more comfortable workspace or, kind of, here's an app that will help your child. I get really frustrated at those, and of course I want to retain some control, and [47:02] but I'm sick of the advice, because it’s just ignoring that this is an impossible situation for us to work through. And it's impossible for certain people more than others. And it, it gets back to the gender inequities and stuff that we're seeing in the racial disparities we're seeing too, where like some people have more control than others, and kind of the, moral discourses that are mapped onto people who don’t as lazy, or not being directed enough, not being disciplined enough, in their ability to overcome this.
CYA [47:39] Right. And calls for discipline are reinforcing those inequities.
JH [47:44] Absolutely. And erasing the inequities that need to change, for the good of all of us.
CYA [47:52] Mmhm. The last thing I wanted to ask you about, you mentioned earlier, and it's the place of food and eating in kids’ experiences of infectious disease. So my work focuses on foodsharing as this place where kids reckon with, and shape, economic moralities, and I was drawn to the way that you portray food is both a fruitful means of providing care, which you mentioned with the imaginal caring, but it’s also this fraught moment, especially with infectious disease, that can upend our sense of normalcy. [48:19] So I wondered both about Zambia and how this kind of played out, in terms of the ways that people are eating with, when you have a sick parent etc, and also how we can bring this to bear on the experiences that families are suddenly having of—being together so much of the time, preparing more meals, and the kinds of tensions that might be coming out at meal time.
JH [48:39] It's such a big question: food. Yeah! Food is big during illness, right, I mean we think of chicken soup and stuff like that—
CYA [48:47] Right—
JH [48:49] I had this other strand of my research that I never really followed through or published on, which was influenced by some of my biological anthropology mentors like Bill Leonard, where I was collecting data on changes in children's weight and body fat throughout the time that the person was sick with TB. And also I had other children in the study who were living in households where no one was sick with TB. But that really fell apart because TB was just so present in the area. But what that was showing on a very small scale was that children were actually faring better during the illness. And I would argue that that was because there was more food coming into the house. There was more money from the household being used on food—
CYA [49:44] So you say that like, their body weight in their nutritional level was better when there was someone in their house with disease?
JH [49:49] Yes.
CYA [49:49] OK, interesting.
JH [49:51] It's almost counterintuitive, and this sort of why—it's such a small scale, which is why I never really put it out there. But I think it's worth reckoning with, you know, people are spending more money on food. And as I think a way of giving care to children. Children were offered that food . . .
CYA [50:12] Yeah
JH [50:13] More . . . and, and so you know, I think about it, the food here is, I mean it's an interesting kind of research question, because the people who live in under one shelter don't always, aren't always equivalent of like, a household right? There's not always sharing.
CYA [50:28] Yeah.
JH [50:29] And participating in meals, there's exclusions, and I would say that a lot of stuff about the inequities now could be seen through food, in the lens of food, as well. Shopping, too, like who's, who's responsible for the shopping?
CYA [50:45] Well, that brings me to my final question. It’s, how is working in the context of infectious disease shaped the way that you're experiencing coronavirus, the way that you move through life and lockdown, and the ways that you try to protect yourself and your family?
JH [51:00] First, and thinking about that question and then having done the research I did, I would say that it makes me think about my enormous privilege. There are a few of us who can work from home, and can buy enough food, have running water . . . you know, it's just, there's so many things I'm able to do that are within my control. And I know that that's not the experience of even many people in my city: I've kept my job—
CYA [51:34] Yeah
JH [51:34] I don't have to go out and work in a grocery store to pay my bills, so I think one is it makes me think about my privilege. It also really, I mean, it makes me think about my—all of our vulnerability too. I was getting really panicky about what was going on before any of the stay at home orders, when we were still working, thinking, kind of just envisioning what was going to happen in a way that certainly, I think, was shaped by my experience of watching epidemics play out and watching people die and knowing that that's a real possibility of seeing it hitting so close to home . . . knowing that we're all vulnerable. Especially in the early days, before stay at home, I was really just like trying to micromanage my husband, asking my husband if he was washing his hands constantly, and making sure my son was washing his hands constantly and really trying to manage where we were going. That took a lot of energy. [52:41] I guess the other thing I'd say is, I keep looking at the systems and structures that are failing us, and trying to remind myself of that. Even as I feel I'm personally failing at everything I'm doing right now. And I imagine there's so many other ways that it's affected me that I can't even figure out in the moment—
CYA [53:01] Yeah
JH [53:02] -That I'm not, I won't even be aware of, perhaps until it's all over. This is such a weird time to be living!
CYA [53:09] Yeah absolutely [pause]. Well thank you so much, Jean, for being here and for sharing your thoughts with us.
JH [53:15] Thank you so much, this was wonderful
Beth Derderian [53:19] Thank you so much for listening to this episode of AnthroPod. If you go to our website at culanth.org, we have links to the articles mentioned in the episode as well as the drawings that Jean mentioned. Again thank you so much for listening and we're sending our best to you and your families at this incredibly difficult time.