Interview with Dr. Kalindi Vora: Discussing Chronic Illnesses & their ties to Gender and Race

I had the opportunity to interview Dr. Kalindi Vora, a Professor of Ethnicity, Race, and Migration, and Women’s, Gender, and Sexuality Studies at Yale University. She is currently researching chronic illness while continuing to study critical race and gender theory.

Her bio reads:

“Kalindi Vora is a Professor of Ethnicity, Race, and Migration, and Women’s Gender and Sexuality Studies at Yale University. Her first book, Life Support: Biocapital and the New History of Outsourced Labor (Rachel Carson Book Prize 2018), takes up questions of technology, colonialism and raced and gendered labor under globalization. Her second book is Surrogate Humanity: Race Robotics and the Politics of Technological Futures (Duke 2019), co-authored with Neda Atanasoski, a project on the racial and gendered politics of robotics and artificial intelligence. With the Precarity Lab, she is co-author of Technoprecarious (2020), which tracks the role of digital technologies in multiplying precarity. A book of her collected work on transnational gestational surrogacy in India is forthcoming under the title, Reimagining Reproduction: Surrogacy, Labour and Technologies of Human Reproduction. Her past research has included STS and ethnographic study of information and communications technology, assisted reproductive technology, and robotics and machine learning, about which she has published in journals such as: Ethnos: Journal of Anthropology, Current Anthropology, Social Identities, The South Atlantic Quarterly, Postmodern Culture, and Catalyst: Feminism, Theory, Technoscience. She currently sits on the editorial board of Catalyst: Feminism, Theory, Technoscience and The Anthropology of Work” (bio and photo from Yale Directory)

Could you talk about how you personally got involved in the fields of technology, science, migration, and women’s studies? What interests you about these topics and/or their intersectionalities?

The first project I did on these topics started in the early 2000s when I was in graduate school. At that time, I was focusing my research on South Asia. One of the most important things that were going on in South Asia was the growth of what they called an India Business Process Outsourcing. In the US, they just called this outsourcing. In the US, Time Magazine, Wired Magazine, and The New York Times were all covering stories about US jobs moving overseas. There was a backlash in the US — a kind of sentiment that we were losing employment for “Americans” because these jobs were going overseas. It ended up resulting in anti-Asian sentiment and anti-South Asian sentiment. This caught my attention.

What was interesting is that we’ve seen this in history before. We’ve seen changes in the US economy. For example, when automotive manufacturing seemed like it was shifting to Japan from the US, there was anti-Asian sentiment, again. So this is not new. What was new was that technology, specifically internet and communication technologies, were the things that were enabling this change in the structure of global labor. I was interested in how technology was making migration, especially around labor, really different. People’s work could be sold overseas. I wanted to see how this affected the lives of workers in India, and also how it was changing how India was perceived in the US. What I ended up discovering is that there was a very long history to this. What’s interesting is that we might wonder: Why customer service call centers? Why cleaning programming code? Why gestational surrogacy? Why are these specific markets the ones that get picked up by Indian workers? These are the three sites in my first book, I thought it seemed kind of intriguing like it couldn’t be random, right? So I did some work in researching histories of labor in South Asia and part of my training is actually not just in gender and race, but also in post-colonial studies. Looking at the earliest days of what we might think of as globalization or outsourcing in the British Empire where governments were sending Indian workers to other countries, Fiji, the Caribbean, South Africa, East Africa, there was already a kind of mindset of what Indian workers were good for: it was service. There was this idea that Indian workers were there to reproduce life for other people. That’s where I got the title of my book: “Life Support.” The other thing I realized in that research was that this wasn’t just any work; it was gendered work and racialized. That history that I just gave you imagines Indian workers as most fit to do what feminists would call reproductive labor. In other words, that’s not making a “valuable product” but instead making it possible for life to keep going for other people. So, my focus started out thinking about actual gendered people to thinking about gendered and raced labor. Technology does change it in some ways, because then you get what’s called virtual migration (rather than physical migration). But, on the other hand, there’s this longer history that the technology is kind of picking up and lifting and moving forward.

What were your motivations for starting to write “Sensitive Subjects: How vulnerability may be a key to unlocking mysteries in health and chronic illness”? Why do you think it’s important to discuss contemporary narratives and the history of the concept of autoimmunity at the same time?

The motivations were that especially after the advent of long COVID there were many complications from COVID infections. We’re seeing very high numbers of people with chronic illness in the US going up and actually even pediatric chronic illness numbers are going up. There’s a lot happening. The book wants to focus on what people who have lived with chronic conditions know from their experience: what they know about health, medicine, and medical care. These are things that physicians may not actually know. So the book shines light on what feminists and people in ethnic studies call the “expertise of experience.” It doesn’t mean I’m saying people who are sick or scientists but they are observing their own conditions. The reason I’m looking at sensitivity is that in the US, not everywhere, we think of sensitivity as almost a kind of weakness or a vulnerability. At the same time, we have examples of how sensitivity can actually be a form of special knowledge. I use the example of the canary in the coal mine. People who are getting sick, because of either biological or psychological sensitivity, but also people in communities that have experienced structural injustice, have the highest rates of chronic illness and have the highest rates of mortality from preventable illness. I’m thinking of all of this and also considering people who are being forced into early illness and mortality because of their conditions as “sensitive subjects.” It includes people who are on a timeline that’s just accelerated. We’re all facing the same threats, but they have knowledge that can actually help us, as a society, get out of this mess. That’s the hypothesis of the book.

To address your question about why it’s important to address narratives, it’s because this is a growing area of research and medicine. I’m a social scientist of science. I study scientists right from an anthropology perspective. But, there’s this new long COVID study at Yale called the “Listen Project.” It’s based on the fact that most of what we know about lung COVID is from patients with lung COVID. They’ve formed online advocacy groups, collected data on themselves, etc. The idea is that you have to listen to patient stories to get the kind of information you need to treat chronic illness. Chronic illness is special in that we have to understand the patient’s full life to understand what the illness even is. Those two things and most of the PhD researchers I’m working with are also people with chronic conditions. I think about how important online patient communities are and sharing our stories, not just to have a sense of belonging and support, but also to become a source of information, especially for people who don’t have good access to medical care. I’m not trying to say that patients know more than doctors, but that it is complementary.

Since your book is composed of individual narratives, I wanted to ask you how you encounter these narratives. Is it through first-hand discussions/experiences? Is there any specific narrative that you are able to share that was particularly striking to you?

There are so many. I’m doing interviews and also sending out a survey to get a bigger data set. There are a lot of stories that are worth sharing, but the one that’s really on my mind right now is that of a young professional interviewed with long COVID who I interviewed. She got COVID and right away, within the third day, started having pain she described as the feeling of something stabbing her through the heart at night. She went to the doctor and at first people took her very seriously. They tested her and she got a cardiologist. They thought it was myocarditis, which is inflammation in the heart. They told her to be very careful and basically put her on bed rest. After giving her medication, she started feeling a little bit better. But three months later, she went on a work trip, and she had another sensation that she described as her heart “making the sound of windshield wipers.” Her co-workers were worried that she was losing blood in her heart, so they rushed her home to the doctor to the cardiologist. It turned out that’s not what it was but they didn’t know what it was. And then problem after problem kept piling up and they couldn’t figure it out. And she said after about six months, her cardiologist stopped returning her messages. He just ghosted her and she thinks he was just getting really frustrated because he couldn’t get any answers. And this was before there wasn’t even a name for a long COVID. Eventually, he sent her to another cardiologist. This cardiologist actually believed that people could have extended cases of COVID. At that time, there was no scientific evidence that was possible, but this cardiologist believed. And so my interviewee started getting more care, and better treatment. But even two years later, she’s having new symptoms. It’s not going away. She’s not better.

The part that no one talks about when they talk about lung COVID is the fear; it’s the feeling that you’re going to die that maybe no one can help you and that you’re never going to get better. A lot of people I’ve interviewed with other conditions talk about this: it’s a cycle where something will seem promising but then you don’t get all the way better, and gradually move back towards the feeling of hopelessness until you find a potential other treatment, and then again the cycle repeats.

How do you see your current book project working in conjunction with your other studies/research on critical race and gender studies?

I study medicine and technology from a social science perspective. So, in my writing, what I try to do with my research is tell stories about how people, whether they be professionals or just everyday people, reimagine the possibilities for science and technology to achieve social change. Like I mentioned about the first book, I wrote about outsourcing. I often start with historical examples.

I’m really interested in moments in history where you look at the imagination of scientists or engineers, and think that things could have taken a different turn. For example, I co-wrote a book about artificial intelligence. In the 1970s, the first person to try to conceive of emotion and artificial intelligence was certain that emotions can be boiled down to six basic functions. That’s how they designed the first AI-driven robot. I’m wondering, why? So, I looked into that, and it turns out, it actually has to do with Charles Darwin.

Another example is that I wrote an article about when I was researching surrogacy in the 1990s. There were two labs, one in Japan and one in the US, and both were completely obsessed with designing an artificial human uterus. This was at a time when the global population was exploding.

If you look at these moments when science or technology is doing something weird, you can see how it’s part of culture invested in reproducing power and privilege, even if that’s unconscious. The places where power and privilege are most carefully understood are in critical race and gender studies. This new book is thinking about the patients with chronic illness, the patients who don’t get better as having a special kind of knowledge of medicine and how it works. Medicine as an institution. That’s the link.

You already touched on this a bit earlier, but can you please share some of the preliminary findings of your current research on chronic illness? What are some of the highlights?

I mentioned the survey. The survey is interesting because it’s based on some of the interviews we’ve done. Out of those interviews, we created a set of questions that are meant to explore how the race, gender, and sexuality of people with chronic conditions affect their experience getting a diagnosis or treatment. Based on our interviews, those things do affect the way that people experience their care. We’ve tried to build the survey to be really sensitive to people’s expressions.

Is the survey open-ended or multiple-choice?

We’re trying to count some things but we’re also just trying to get a sense of experience. So we’re doing both. The survey response collection will hopefully be done within the year and we’ll publish that.

On a slightly different note, I am currently researching the female self-help movement in the late 1900s as part of my year-long paper for school. Given that your research discusses healthcare self-monitoring, can you discuss why you think this practice is important and how it has developed over time?

Starting in the 1940s and 50s in the US, people started using biofeedback which is essentially the foremother of self-monitoring devices. The basic, new idea was that there are certain physical reactions that we have — accelerated heart rate, body temperature, electric signals from the brain or the heart — that indicate our physiological state. We could correlate these with subjective experiences, like stress, fear, or anxiety. The idea that there was a big correlation between stress and health was getting bigger and bigger.

I wrote an article about a smart ring, and thought a little bit about the history of Eugenics and the idea of fitness as coming out of that history. On the one hand, we have the idea that stress is either unhealthy or can be healthy but should be monitored. On the other hand, we have this idea that there’s some perfect kind of health. That idea of fitness comes from a history of Eugenics, where fitness indicates both health but also a ‘fitness’ to be in society. Eugenics indicated that physical fitness correlated with moral fitness, as if it were a judge of your character.

I see some of that in wellness culture today. It’s the idea that if you’re a really self-disciplined person, you will be healthy and fit. It’s ableist, so we have to be very careful. That’s my main concern about self-monitoring. That, as well as the fact that there’s this excitement about people doing a lot of their sort of general health monitoring at home (ex: we have wearable devices, meaning we won’t have to go into clinics.) But, there are so many people who can’t even go and get basic medical care, that I’m worried that the idea that people can just do it at home is going to make that worse.

More generally, what has been the biggest challenge/obstacle you’ve faced when researching chronic illness?

One challenge is that there are so many people who are interested in having their stories heard, which is great, but there’s only one of me! So many people are not well and want to share their stories, because they know what’s important, but this is a difficulty for me unless I train someone else to do the interviews.

Also, in disability justice circles people talk about “crip time.” It’s the idea that being disabled changes the temporality and pace at which you can do things in the world. For example, if you have a wheelchair, and there’s no wheelchair ramp, it’s gonna take you longer to get into the classroom. However, there is a similar idea that comes out of that called “sick time.” It’s the idea that when you have a chronic condition (and some days you’re well and some days you’re not as functional), you’re also going to experience the world differently. We are all trained to think of capitalist time and being able to perform as the norm; but, in disability justice circles, “sick time” and “crip time” mean that you’re not going to hurt yourself to show up for a meeting. People talk about working in their beds because they’re too sick to get up. I don’t want to make someone do an interview with me if they’re having to do it from their bed.

With the idea of disability justice, we talk about access. We talk about how we can give people equal access to conversation, education, and medicine. So, accommodating people’s different timelines and temporalities can be a challenge. But I also think it’s really important to re-educate ourselves about how to be in the world in a way that doesn’t exclude people who just can’t go at the speed of capitalism.

What are your goals for how you hope to see your research on chronic illness develop, specifically within the next few months or during the summer?

For my book, which is a little bit of a quieter project, people have asked me to post stuff on social media, so I will. I have a personal Instagram, Facebook, and Twitter for the project.

I’m also part of a sibling project with a collaborator at UC Davis. His name is Ryan Cartwright. We’re trying to bring together disability studies and what I’m doing, which is studying chronic illness. A journalist in The Washington Post called long COVID a “mass disabling event,” so when you have that kind of scale, we’re talking about a change in society. Evidently, we need to bring together chronic illness and disability knowledge. This project is called “Enduring Conditions” and there’s going to be a large public part of it. We’re going to be sharing a lot of our teaching and our events and we’re working with artists and writers. We’re going to be putting it up online. I hope we’ll have a website, but we’ll definitely have social media.

What advice do you have for those interested in fields similar to your areas of interest? Do you have blogs, podcasts, or summer opportunities that you recommend students explore?

There’s a lot. If they’re interested in medical justice spaces, there’s a magazine Sick Magazine. There’s a New York-based artist collective called Lutte. I really like the work of Joanna Hedva, another chronically ill artist.

In terms of blogs and podcasts, it depends on what they’d be interested in. I listen to a lot of complementary medicine podcasts because complementary medicine tends to be better with chronicity. Conventional medicine tends to be better with emergent care, trauma, and other things that have to be dealt with right away.