Hello and welcome to the How Epidemics and project based at the University of Oxford.
My name is Erica Charters, and in these videos I discuss with experts how they research disease in a variety of ways,
as well as their investigations into how epidemics.
And today I'm here with Christiana Bastos, who's research professor of anthropology at the University of Lisbon.
So, Christiana, people might know that anthropologist studying humans,
human society and human culture, so how do you study disease as an anthropologist?
What kind of evidence do you use and your research? Hello, Eric.
Before we start, I would like to thank you and compliment you increasing for this wonderful journey that has been along these months and
during most of the period of COVID to have a team of and previously announced one another scholars of al-Sunna illness,
they'll along with one another around epidemics. I see those when they're sick and they should compliment you for that.
So what do we entomologists do when we study disease?
First thing to be said is there's a classic distinction between biologists say it's or well-known medical anthropology.
There's one thing that's disease and diagnosing this illness or the experience.
And so the disease is an entity that is defined in my medical terms.
It's something that is independent of the experience of it.
It exists in medical bags. It exists in scientific knowledge.
It can be described when you can prescribe things about it.
And one other reality, which has an overlapping with that of disease, is the experience of illness.
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.
So there's some lay knowledge about this amongst everyone, in a sense, because one thing is to feel symptoms or malaise or anything.
And the other thing is to be diagnosed by a scientific methods of something that is independent of your experience.
So this is the first thing we know as anthropologists and we address both things.
So there's something that is subject to add.
Acknowledgements, all sorts of reporting by people that are under the experience, and this at the same time,
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.
One sink may overlap very much with the other, but still the two go together but in different parts.
So we address both we know about. We tried to approach with the knowledge ment of what scientists and medical
doctors and other health personnel and historians officials say about disease.
But we pay a lot of attention to what people are experiencing and relating to that entity.
That may sound very abstract, but it is not so abstract when you get to see situations where intense cultural,
political and social determinants influence the way people think about what they are experiencing.
And that may even sometimes turn them against getting what would be prescribed and remedies the prescribed in the therapeutics for that.
Is that clear or is too abstract? No, that that that makes a lot of sense.
And I think that's the distinction between illness and disease and also thinking about the way in which
the experience also shapes our our understanding of diseases is very helpful and very insightful.
And I know you've worked on a range of diseases using this methodology.
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.
So can you give us some examples of how you researched HIV and AIDS and thinking about what it meant to experience moments?
Absolutely. I started with AIDS at the very early moment in my academic life.
I was a graduate student in New York, and the AIDS epidemic was so overwhelming to anyone who lived there.
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.
And this was before there were effective treatments. There were some.
There was a lot of denialism, too. There was a lot of fear and fear.
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
as a subject of study and trying to use the methods of research that we used for other things as well.
And the one thing that distinguishes anthropology from everything else is what we call it non-profit,
which is getting a close close up proximity to whatever we are discussing,
listening to people listening in multiple levels because it's not just about what people say in an articulate interview that matters,
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.
And that's always messy and complex.
It's not clear. It's not crystal clear, like it appears in scientific base.
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.
Some things were it seemed very bizarre like denial.
These were people having misbehaved with contradictory behaviours, escaping the logic of what they should be, the response to a disease.
And that's volume not just for AIDS, but for any epidemic outbursts you see in COVID.
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.
But that emerges from them a complexity and well of contradictions that these human behaviour and that we
anthropologists try to grasp a little bit more then when people are using the conventional methods of addressing the.
Documents and linear interviews or statements or everything,
so we tends to be more indulgent or more sympathetic or more embrace in a more complicated way,
we think we tend to think of the contradictions that are in people's perceptions and actions.
So this is one part of it looking at what is going on it know graphically.
So accounting for the content is not not trying to follow one truth that's behind that complexity only,
but accounting for that diversity and listening to all different.
Messages that come out of behaviour and expressions and the way I did it was too,
I had the interests at that time wanted and making of scientific knowledge.
The FTSE field was emerging and awful at the time,
and I was very interested in analysing how knowledge about dates had developed, both on the medical side,
which was happening on the say laboratory side,
which was happening to on the social sciences side epidemiology and on what
we in a very simplistic way can go lay knowledge on people's knowledge that.
Guides and emerges from their own behaviour in their own attitudes, so it's something everybody was trying to look at,
that there were all these enquiries or knowledge, attitudes and behaviours sort of thing, but it was poor.
It was short to capture the complexity that was going on, and ethnography seemed like a good tool.
But of course, it's slow, takes time and it doesn't give you immediate answers that are immediately good to transforming public recommendations.
It helps in many of my colleagues and classmates worked along those lines.
And what I aimed at at that time was a little bit more ambitious.
I was a graduate student, some that you're very ambitious. Theoretically, you wanted something new.
Are you supposed to do something new? Not just the feeling that's of something that is a prearranged.
So I wanted to look at how scientific knowledge was shaped in different social situations.
One thing was what I was seeing around me in the Old City, where, you know, all these resources were being pulled together.
And there's there were there were many different flows and feedbacks, but there was a way of describing it is,
you know, the best possible way of people interacting, bringing in all day, Neal,
all the resources they could do, trying to find a solution to something that was unexpected and expected in the sense that for many,
infectious diseases and epidemics was something of the past.
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.
This is infectious disease was all over was part of daily life for many, including many health services.
And I could have done that in different places.
But the one that I found more interesting to explore,
what I was looking after was that in Brazil have been civil war regional centres that
were equipped with both high-tech research on biomedical under my medical field,
with the good tradition of it, ideological research and also a long familiarity with the infectious disease and epidemic diseases.
You know, things like Chagas disease was there.
Leptospirosis was there and malaria was the nearby.
So there was the range of health care providers that were very familiar with infectious disease.
Still, that was not the way AIDS first came into being as a clinical entity or as a biomedical entity to be research.
First, it went to DSD to sexually transmitted diseases along with their mythology, which was the place of syphilis traditionally.
But then it went to the infectious disease speciality, which had a lot of experience.
I want to see how does it work? The, I think biomedical research and the long experience with infectious disease that is going on.
Maybe I expected too much. And now I think I think one of the things that's that you've written about,
and that's very fascinating for us to remember now, especially during COVID, is to remember that AIDS was once a new disease.
And as you say, it thought to be the return of threatening infectious disease that people weren't expecting.
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?
And as you've pointed out, some of it is about the transition to a chronic illness.
Like you've just outlined the changes in Brazil when AIDS becomes a different type of disease.
So how would you describe the ending of AIDS that ended?
What kind of ending it's going on with? That disease is the right.
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.
But there is something also very interesting about the Brazilian setting, which was because of the way it was acknowledged publicly.
It mobilised. And a sort of collaborative action.
I'm not saying it was a rosy picture of everything,
but there was a collaborative action to get solutions that allowed for it to become an issue of
public interest in ways that diverged from what they had seen in the late 80s in the United States,
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.
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.
So as soon as there were efficient treatments, it became.
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.
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,
by the special policies like energy that is put by society and activists and in the public sector.
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.
It seemed that it was running like a chronic condition, which in a way was the end of the first AIDS, which was the.
Epidemic that erupts not from nowhere, but not really from anywhere expects,
and it challenges and shook the foundations of what people thought it was there and there in Denver.
For those who are in the more sunny side of life in the worlds, you know,
that means being rid of infectious diseases and predicting like these epidemics was something of.
Less development or developing situations.
And for those who were in those cities circumstances,
AIDS seemed to be one more that maybe brought more attention to the world, so maybe brought in another set of resources.
But against some problems of creating other sorts of inequalities.
So when it became a treatable condition, there was a name to one of the.
Configurations of the epidemic. And it was reconfigured into something else.
What was no longer a. New epidemic, but a dry condition that could be treated and that seemed to be.
There was a stability, at least for some, for some. Again, it was very different in different parts of the world.
You know, it depends on who you are in society, what sort of resources you have.
What gender you have in some places. What access you have to treatment and so on and so on.
AIDS was shows that diversity and access to health and the multiple fractures within global health,
what seemed to be a stable situation which, you know,
if you would write about AIDS, say, four or five years ago, AIDS in Brazil,
four or five years ago, it's like, yeah, it's it turned into a chronic condition.
It's but guess resources, but there's something else.
Came along, too. So now it's another ending.
And it doesn't necessarily mean that it's a real bad situation to people affected by it.
And that was no longer part of my research. But from a student, the official who I supervised in Brazil at,
he followed home a stop being treated by infectious disease specialist to be treated by general practitioners in all centres.
So that meant another end to the epidemic, but it's not ended.
The disease is there, and the experience of the disease is still there for many people.
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.
And of end, it transitioned into something else,
but it didn't disappear from the face of the very few diseases disappeared from the face of the Earth.
Now the experience of this is the fear of something that comes with them.
Configuration of an epidemic that's appearing from nowhere and is killing and
making people suffer and at transmitting being transmitted from one to another,
which is like the experience of a new epidemic that changes into something else.
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.
And then again, in another way in the next phase.
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,
gives way to another phase, and that phase can end and go to another to another phase again.
I think it's a it's a wonderful summary,
and I think AIDS gives us such a clear example of this that people remember people that we had a different experience,
a different response to it at different times.
And as you say, there's the medical treatment or biomedical treatments, such as medications for other diseases such as vaccines.
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.
And Christiane, your work and especially the the method of anthropology, I think,
really helps us to understand all these different ways that we experience disease.
So, Cassandra, thank you very much for sharing your expertise with us.
And thank you also all of you out there for watching these videos.
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