1 00:00:11,620 --> 00:00:16,600 Hello and welcome to the How Epidemics and project based at the University of Oxford. 2 00:00:16,600 --> 00:00:23,590 My name is Erica Charters, and in these videos I discuss with experts how they research disease in a variety of ways, 3 00:00:23,590 --> 00:00:26,710 as well as their investigations into how epidemics. 4 00:00:26,710 --> 00:00:35,110 And today I'm here with Christiana Bastos, who's research professor of anthropology at the University of Lisbon. 5 00:00:35,110 --> 00:00:40,150 So, Christiana, people might know that anthropologist studying humans, 6 00:00:40,150 --> 00:00:45,370 human society and human culture, so how do you study disease as an anthropologist? 7 00:00:45,370 --> 00:00:50,560 What kind of evidence do you use and your research? Hello, Eric. 8 00:00:50,560 --> 00:00:58,150 Before we start, I would like to thank you and compliment you increasing for this wonderful journey that has been along these months and 9 00:00:58,150 --> 00:01:09,340 during most of the period of COVID to have a team of and previously announced one another scholars of al-Sunna illness, 10 00:01:09,340 --> 00:01:15,760 they'll along with one another around epidemics. I see those when they're sick and they should compliment you for that. 11 00:01:15,760 --> 00:01:19,330 So what do we entomologists do when we study disease? 12 00:01:19,330 --> 00:01:30,220 First thing to be said is there's a classic distinction between biologists say it's or well-known medical anthropology. 13 00:01:30,220 --> 00:01:35,160 There's one thing that's disease and diagnosing this illness or the experience. 14 00:01:35,160 --> 00:01:40,600 And so the disease is an entity that is defined in my medical terms. 15 00:01:40,600 --> 00:01:44,290 It's something that is independent of the experience of it. 16 00:01:44,290 --> 00:01:48,370 It exists in medical bags. It exists in scientific knowledge. 17 00:01:48,370 --> 00:01:54,460 It can be described when you can prescribe things about it. 18 00:01:54,460 --> 00:02:01,810 And one other reality, which has an overlapping with that of disease, is the experience of illness. 19 00:02:01,810 --> 00:02:13,630 And when you're experiencing some ill health, it may be because you are with the exact thing that is a disease or for other reasons. 20 00:02:13,630 --> 00:02:27,700 So there's some lay knowledge about this amongst everyone, in a sense, because one thing is to feel symptoms or malaise or anything. 21 00:02:27,700 --> 00:02:39,310 And the other thing is to be diagnosed by a scientific methods of something that is independent of your experience. 22 00:02:39,310 --> 00:02:47,380 So this is the first thing we know as anthropologists and we address both things. 23 00:02:47,380 --> 00:02:55,890 So there's something that is subject to add. 24 00:02:55,890 --> 00:03:07,970 Acknowledgements, all sorts of reporting by people that are under the experience, and this at the same time, 25 00:03:07,970 --> 00:03:19,140 an entity of knowledge that defines maybe not exactly in the terms that the people are experienced then, but it's identifiable in scientific terms. 26 00:03:19,140 --> 00:03:27,960 One sink may overlap very much with the other, but still the two go together but in different parts. 27 00:03:27,960 --> 00:03:38,250 So we address both we know about. We tried to approach with the knowledge ment of what scientists and medical 28 00:03:38,250 --> 00:03:43,680 doctors and other health personnel and historians officials say about disease. 29 00:03:43,680 --> 00:03:49,590 But we pay a lot of attention to what people are experiencing and relating to that entity. 30 00:03:49,590 --> 00:04:04,590 That may sound very abstract, but it is not so abstract when you get to see situations where intense cultural, 31 00:04:04,590 --> 00:04:13,470 political and social determinants influence the way people think about what they are experiencing. 32 00:04:13,470 --> 00:04:29,730 And that may even sometimes turn them against getting what would be prescribed and remedies the prescribed in the therapeutics for that. 33 00:04:29,730 --> 00:04:34,260 Is that clear or is too abstract? No, that that that makes a lot of sense. 34 00:04:34,260 --> 00:04:41,460 And I think that's the distinction between illness and disease and also thinking about the way in which 35 00:04:41,460 --> 00:04:47,400 the experience also shapes our our understanding of diseases is very helpful and very insightful. 36 00:04:47,400 --> 00:04:51,930 And I know you've worked on a range of diseases using this methodology. 37 00:04:51,930 --> 00:05:00,310 I know that you right now are working on measles. You've worked on syphilis, but you also started really your research career working on AIDS and HIV. 38 00:05:00,310 --> 00:05:09,330 So can you give us some examples of how you researched HIV and AIDS and thinking about what it meant to experience moments? 39 00:05:09,330 --> 00:05:17,650 Absolutely. I started with AIDS at the very early moment in my academic life. 40 00:05:17,650 --> 00:05:24,360 I was a graduate student in New York, and the AIDS epidemic was so overwhelming to anyone who lived there. 41 00:05:24,360 --> 00:05:33,540 Whether you had aids or not or you knew people, hardly anyone did not know somebody with AIDS or affected by AIDS in many different ways. 42 00:05:33,540 --> 00:05:38,130 And this was before there were effective treatments. There were some. 43 00:05:38,130 --> 00:05:42,090 There was a lot of denialism, too. There was a lot of fear and fear. 44 00:05:42,090 --> 00:05:55,080 There was a lot of community responses too. And we raised students interested in medical anthropology and responded to the crisis also by embracing it 45 00:05:55,080 --> 00:06:02,670 as a subject of study and trying to use the methods of research that we used for other things as well. 46 00:06:02,670 --> 00:06:09,210 And the one thing that distinguishes anthropology from everything else is what we call it non-profit, 47 00:06:09,210 --> 00:06:17,100 which is getting a close close up proximity to whatever we are discussing, 48 00:06:17,100 --> 00:06:26,640 listening to people listening in multiple levels because it's not just about what people say in an articulate interview that matters, 49 00:06:26,640 --> 00:06:39,300 but what they see in indirect ways, or do not say what they're about to say or have hardly formed and shapes, behaviour, shapes, beliefs. 50 00:06:39,300 --> 00:06:43,350 And that's always messy and complex. 51 00:06:43,350 --> 00:06:49,200 It's not clear. It's not crystal clear, like it appears in scientific base. 52 00:06:49,200 --> 00:07:07,080 Thinks so, and it was an earthquake, a chaotic situation for everyone, and for many of those who were used to be on the side of the aisle share. 53 00:07:07,080 --> 00:07:10,170 Some things were it seemed very bizarre like denial. 54 00:07:10,170 --> 00:07:19,230 These were people having misbehaved with contradictory behaviours, escaping the logic of what they should be, the response to a disease. 55 00:07:19,230 --> 00:07:24,820 And that's volume not just for AIDS, but for any epidemic outbursts you see in COVID. 56 00:07:24,820 --> 00:07:35,190 There's so much denialism that is so bizarre for those of us who are in the side of public health and the caretakers and everything. 57 00:07:35,190 --> 00:07:44,400 But that emerges from them a complexity and well of contradictions that these human behaviour and that we 58 00:07:44,400 --> 00:07:54,950 anthropologists try to grasp a little bit more then when people are using the conventional methods of addressing the. 59 00:07:54,950 --> 00:08:00,800 Documents and linear interviews or statements or everything, 60 00:08:00,800 --> 00:08:13,760 so we tends to be more indulgent or more sympathetic or more embrace in a more complicated way, 61 00:08:13,760 --> 00:08:21,110 we think we tend to think of the contradictions that are in people's perceptions and actions. 62 00:08:21,110 --> 00:08:27,530 So this is one part of it looking at what is going on it know graphically. 63 00:08:27,530 --> 00:08:35,420 So accounting for the content is not not trying to follow one truth that's behind that complexity only, 64 00:08:35,420 --> 00:08:43,080 but accounting for that diversity and listening to all different. 65 00:08:43,080 --> 00:08:50,490 Messages that come out of behaviour and expressions and the way I did it was too, 66 00:08:50,490 --> 00:08:57,510 I had the interests at that time wanted and making of scientific knowledge. 67 00:08:57,510 --> 00:09:02,640 The FTSE field was emerging and awful at the time, 68 00:09:02,640 --> 00:09:13,620 and I was very interested in analysing how knowledge about dates had developed, both on the medical side, 69 00:09:13,620 --> 00:09:18,750 which was happening on the say laboratory side, 70 00:09:18,750 --> 00:09:26,100 which was happening to on the social sciences side epidemiology and on what 71 00:09:26,100 --> 00:09:36,450 we in a very simplistic way can go lay knowledge on people's knowledge that. 72 00:09:36,450 --> 00:09:46,570 Guides and emerges from their own behaviour in their own attitudes, so it's something everybody was trying to look at, 73 00:09:46,570 --> 00:09:55,920 that there were all these enquiries or knowledge, attitudes and behaviours sort of thing, but it was poor. 74 00:09:55,920 --> 00:10:02,670 It was short to capture the complexity that was going on, and ethnography seemed like a good tool. 75 00:10:02,670 --> 00:10:16,020 But of course, it's slow, takes time and it doesn't give you immediate answers that are immediately good to transforming public recommendations. 76 00:10:16,020 --> 00:10:21,450 It helps in many of my colleagues and classmates worked along those lines. 77 00:10:21,450 --> 00:10:28,380 And what I aimed at at that time was a little bit more ambitious. 78 00:10:28,380 --> 00:10:33,450 I was a graduate student, some that you're very ambitious. Theoretically, you wanted something new. 79 00:10:33,450 --> 00:10:40,080 Are you supposed to do something new? Not just the feeling that's of something that is a prearranged. 80 00:10:40,080 --> 00:10:49,860 So I wanted to look at how scientific knowledge was shaped in different social situations. 81 00:10:49,860 --> 00:10:57,870 One thing was what I was seeing around me in the Old City, where, you know, all these resources were being pulled together. 82 00:10:57,870 --> 00:11:09,000 And there's there were there were many different flows and feedbacks, but there was a way of describing it is, 83 00:11:09,000 --> 00:11:16,350 you know, the best possible way of people interacting, bringing in all day, Neal, 84 00:11:16,350 --> 00:11:25,470 all the resources they could do, trying to find a solution to something that was unexpected and expected in the sense that for many, 85 00:11:25,470 --> 00:11:29,400 infectious diseases and epidemics was something of the past. 86 00:11:29,400 --> 00:11:40,370 It's not the case for everybody else in the world outside New York City and even in New York City is that you end up seeing epidemics and pandemics. 87 00:11:40,370 --> 00:11:48,000 This is infectious disease was all over was part of daily life for many, including many health services. 88 00:11:48,000 --> 00:11:52,350 And I could have done that in different places. 89 00:11:52,350 --> 00:11:56,880 But the one that I found more interesting to explore, 90 00:11:56,880 --> 00:12:03,090 what I was looking after was that in Brazil have been civil war regional centres that 91 00:12:03,090 --> 00:12:12,540 were equipped with both high-tech research on biomedical under my medical field, 92 00:12:12,540 --> 00:12:26,490 with the good tradition of it, ideological research and also a long familiarity with the infectious disease and epidemic diseases. 93 00:12:26,490 --> 00:12:31,260 You know, things like Chagas disease was there. 94 00:12:31,260 --> 00:12:36,570 Leptospirosis was there and malaria was the nearby. 95 00:12:36,570 --> 00:12:45,150 So there was the range of health care providers that were very familiar with infectious disease. 96 00:12:45,150 --> 00:12:57,780 Still, that was not the way AIDS first came into being as a clinical entity or as a biomedical entity to be research. 97 00:12:57,780 --> 00:13:07,170 First, it went to DSD to sexually transmitted diseases along with their mythology, which was the place of syphilis traditionally. 98 00:13:07,170 --> 00:13:12,750 But then it went to the infectious disease speciality, which had a lot of experience. 99 00:13:12,750 --> 00:13:24,000 I want to see how does it work? The, I think biomedical research and the long experience with infectious disease that is going on. 100 00:13:24,000 --> 00:13:29,910 Maybe I expected too much. And now I think I think one of the things that's that you've written about, 101 00:13:29,910 --> 00:13:36,930 and that's very fascinating for us to remember now, especially during COVID, is to remember that AIDS was once a new disease. 102 00:13:36,930 --> 00:13:43,320 And as you say, it thought to be the return of threatening infectious disease that people weren't expecting. 103 00:13:43,320 --> 00:13:51,550 But also, I think what you've written about is this transition in some ways because we might want to think about, you know, how how has AIDS ended? 104 00:13:51,550 --> 00:13:56,250 And as you've pointed out, some of it is about the transition to a chronic illness. 105 00:13:56,250 --> 00:14:02,660 Like you've just outlined the changes in Brazil when AIDS becomes a different type of disease. 106 00:14:02,660 --> 00:14:08,490 So how would you describe the ending of AIDS that ended? 107 00:14:08,490 --> 00:14:12,540 What kind of ending it's going on with? That disease is the right. 108 00:14:12,540 --> 00:14:22,950 I'm sorry, I got to hold on to what had been my research, which was the beginning of AIDS, and it's been a long time. 109 00:14:22,950 --> 00:14:34,290 But there is something also very interesting about the Brazilian setting, which was because of the way it was acknowledged publicly. 110 00:14:34,290 --> 00:14:41,320 It mobilised. And a sort of collaborative action. 111 00:14:41,320 --> 00:14:44,740 I'm not saying it was a rosy picture of everything, 112 00:14:44,740 --> 00:14:54,880 but there was a collaborative action to get solutions that allowed for it to become an issue of 113 00:14:54,880 --> 00:15:02,920 public interest in ways that diverged from what they had seen in the late 80s in the United States, 114 00:15:02,920 --> 00:15:13,990 where a lot of them had denial from the government, from the media and so on, as one was generating a lot of anger by the communities. 115 00:15:13,990 --> 00:15:25,780 It's not that it was rosy, but that the creation of a public sphere allowed for it to become endorsed treaties in the public system. 116 00:15:25,780 --> 00:15:32,610 So as soon as there were efficient treatments, it became. 117 00:15:32,610 --> 00:15:49,720 And what I would say, normalised with treaties, with a sort of attention that was no longer the exceptional different disease, so from year to end. 118 00:15:49,720 --> 00:15:59,140 You can't talk about an ending, it's there's a moving from a sort of attention to a different sort of attention by the media, 119 00:15:59,140 --> 00:16:09,130 by the special policies like energy that is put by society and activists and in the public sector. 120 00:16:09,130 --> 00:16:25,330 And once it became and knowledge is a priority by the government, by the federal government, treatments are and provided still to people with AIDS. 121 00:16:25,330 --> 00:16:38,550 It seemed that it was running like a chronic condition, which in a way was the end of the first AIDS, which was the. 122 00:16:38,550 --> 00:16:46,230 Epidemic that erupts not from nowhere, but not really from anywhere expects, 123 00:16:46,230 --> 00:16:56,250 and it challenges and shook the foundations of what people thought it was there and there in Denver. 124 00:16:56,250 --> 00:17:01,440 For those who are in the more sunny side of life in the worlds, you know, 125 00:17:01,440 --> 00:17:09,160 that means being rid of infectious diseases and predicting like these epidemics was something of. 126 00:17:09,160 --> 00:17:13,480 Less development or developing situations. 127 00:17:13,480 --> 00:17:16,750 And for those who were in those cities circumstances, 128 00:17:16,750 --> 00:17:24,550 AIDS seemed to be one more that maybe brought more attention to the world, so maybe brought in another set of resources. 129 00:17:24,550 --> 00:17:31,540 But against some problems of creating other sorts of inequalities. 130 00:17:31,540 --> 00:17:40,560 So when it became a treatable condition, there was a name to one of the. 131 00:17:40,560 --> 00:17:46,650 Configurations of the epidemic. And it was reconfigured into something else. 132 00:17:46,650 --> 00:17:57,460 What was no longer a. New epidemic, but a dry condition that could be treated and that seemed to be. 133 00:17:57,460 --> 00:18:03,970 There was a stability, at least for some, for some. Again, it was very different in different parts of the world. 134 00:18:03,970 --> 00:18:09,580 You know, it depends on who you are in society, what sort of resources you have. 135 00:18:09,580 --> 00:18:16,720 What gender you have in some places. What access you have to treatment and so on and so on. 136 00:18:16,720 --> 00:18:29,110 AIDS was shows that diversity and access to health and the multiple fractures within global health, 137 00:18:29,110 --> 00:18:35,020 what seemed to be a stable situation which, you know, 138 00:18:35,020 --> 00:18:39,880 if you would write about AIDS, say, four or five years ago, AIDS in Brazil, 139 00:18:39,880 --> 00:18:44,350 four or five years ago, it's like, yeah, it's it turned into a chronic condition. 140 00:18:44,350 --> 00:18:48,850 It's but guess resources, but there's something else. 141 00:18:48,850 --> 00:18:53,890 Came along, too. So now it's another ending. 142 00:18:53,890 --> 00:19:04,390 And it doesn't necessarily mean that it's a real bad situation to people affected by it. 143 00:19:04,390 --> 00:19:13,720 And that was no longer part of my research. But from a student, the official who I supervised in Brazil at, 144 00:19:13,720 --> 00:19:25,330 he followed home a stop being treated by infectious disease specialist to be treated by general practitioners in all centres. 145 00:19:25,330 --> 00:19:29,680 So that meant another end to the epidemic, but it's not ended. 146 00:19:29,680 --> 00:19:36,010 The disease is there, and the experience of the disease is still there for many people. 147 00:19:36,010 --> 00:19:46,800 And it's like syphilis. Again, you know, it's not that I'm going to talk along on syphilis, but you know, with penicillin, it kind of. 148 00:19:46,800 --> 00:19:50,370 And of end, it transitioned into something else, 149 00:19:50,370 --> 00:19:57,120 but it didn't disappear from the face of the very few diseases disappeared from the face of the Earth. 150 00:19:57,120 --> 00:20:06,680 Now the experience of this is the fear of something that comes with them. 151 00:20:06,680 --> 00:20:12,650 Configuration of an epidemic that's appearing from nowhere and is killing and 152 00:20:12,650 --> 00:20:18,860 making people suffer and at transmitting being transmitted from one to another, 153 00:20:18,860 --> 00:20:23,670 which is like the experience of a new epidemic that changes into something else. 154 00:20:23,670 --> 00:20:34,010 So it's fading from one scene to another, being experienced in one way at some level and then in another way in the next phase. 155 00:20:34,010 --> 00:20:37,220 And then again, in another way in the next phase. 156 00:20:37,220 --> 00:20:46,910 So if and of transforms from one thing to another, it doesn't really in ends, but it ends as we know it in one sense, 157 00:20:46,910 --> 00:20:56,320 gives way to another phase, and that phase can end and go to another to another phase again. 158 00:20:56,320 --> 00:20:58,360 I think it's a it's a wonderful summary, 159 00:20:58,360 --> 00:21:04,990 and I think AIDS gives us such a clear example of this that people remember people that we had a different experience, 160 00:21:04,990 --> 00:21:06,700 a different response to it at different times. 161 00:21:06,700 --> 00:21:14,470 And as you say, there's the medical treatment or biomedical treatments, such as medications for other diseases such as vaccines. 162 00:21:14,470 --> 00:21:23,110 But how that can change our experience of it, but also, as you point out, it's very different in different places and for different parts of society. 163 00:21:23,110 --> 00:21:28,090 And Christiane, your work and especially the the method of anthropology, I think, 164 00:21:28,090 --> 00:21:32,920 really helps us to understand all these different ways that we experience disease. 165 00:21:32,920 --> 00:21:36,970 So, Cassandra, thank you very much for sharing your expertise with us. 166 00:21:36,970 --> 00:21:40,780 And thank you also all of you out there for watching these videos. 167 00:21:40,780 --> 00:21:46,870 Please do fill out a feedback form. 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