Massification, Debility, and 40 Years of Crisis in Bhopal w/ Jiya Pandya (05/16/24)

Death Panel podcast hosts Beatrice Adler-Bolton and Jules Gill-Peterson speak with historian Jiya Pandya about how the Bhopal gas leak—often described as the worst industrial disaster in living memory—continues to be an unchecked crisis 40 years later, what it teaches us about how to respond to more recent crises, and how organizers here in the US can get in touch with Bhopal survivor activists who will be coming to the US later this fall.

As always, support Death Panel at www.patreon.com/deathpanelpod

Transcript by Kendra Kline. (Kendra is currently accepting freelance transcript work — email her if you need transcripts or visit her website)


Jiya Pandya 0:01

That long logic of debility gets elided in research because we only think of the sort of production of harm or production of violence as a unique moment of crisis. So the COVID pandemic, but also the genocide that is happening in Gaza right now. They are not unique moments of crisis. Things don't just happen out of nowhere. And the job of the historian, but also I think our job as people committed to a better world, is to resist that temporality and say, these things have been around for a long time and if we don't deal with the causes of them, they will continue to exist for a long time.

[ Intro music ]

Beatrice Adler-Bolton 1:02

Welcome to the Death Panel. This episode and every episode is brought to you by Death Panel patrons. To support the show and get access to our second weekly bonus episode, become a patron at patreon.com/deathpanelpod. If you'd like to help us out a little bit more, share the show with your friends, post about your favorite episodes, pick up copies of Health Communism and A Short History of Trans Misogyny at your local bookstore, or request them at your local library, and follow us @deathpanel_.

I'm Beatrice Adler-Bolton and I am here today with my co-host, Jules Gill-Peterson.

Jules Gill-Peterson 1:36

Hello.

Beatrice Adler-Bolton 1:37

And the two of us are joined by a wonderful guest whom we've been really looking forward to speaking with about their work on the historical and ongoing creation and perpetuation of disposability, precarity and debility in what has often been described as the world's worst industrial disaster, which is the 1984 gas leak in a US-run factory in Bhopal, India.

Our guest is Jiya Pandya. Jiya is an emerging scholar whose research focuses on the intersections of disability, race, gender, sexuality, caste and labor in the Global South. Their work traces histories of late colonial and postcolonial welfare systems in India, and the centrality of disability and welfare to imperialism and nationalism between the 1930s and the 1990s, as well as the hierarchies of access and care that are enforced by international aid regimes. Jiya is completing their PhD at Princeton University in the Department of History and Program in Gender and Sexuality Studies. And we asked them on today to talk about an article that they wrote for Disability Studies Quarterly, called Crip Life Amidst Debilitation: Medicalization, Survival, and the Bhopal Gas Leak.

Jiya, welcome to the Death Panel. So wonderful to have you on the show.

Jiya Pandya 2:48

Hi. Thank you so much for having me. I'm so excited.

Beatrice Adler-Bolton 2:50

Thank you so much for joining us, Jiya. I think you're doing really important decolonial disability studies work, and I'm really honored that we get to share some of that with our listeners today. So as I mentioned, we're talking about an article that Jiya wrote for Disability Studies Quarterly, called Crip Life Amidst Debilitation, which is about the infamous and still ongoing environmental disaster known as the Bhopal Gas Leak. In early December 1984, in the middle of the night, a US-run pesticide plant that for years had already been prone to safety failures and chemical leaks, had a catastrophic mechanical problem that resulted in the rapid release of over 40 tons of toxic gas into the nearby area, exposing hundreds of thousands of people. Thousands were dead by the next morning and thousands more have had their health shaped by this ongoing tragedy. And Jiya, the article that you wrote is really great.

This is a hard topic, but it's critically important. This coming December is the 40th anniversary of this deadly gas leak, which again, is often referred to as the worst environmental disaster in living memory. We'll get into this in more detail momentarily, I'm sure, but I just want to make sure that it's clear from the top that this "disaster" has never totally been cleaned up. Four generations of Bhopali people have been poisoned by this factory. Researchers, NGOs, doctors, liberal aid and human rights organizations like Amnesty International, etc., have all called the immediate urgent and ongoing exposure of half a million people to poisoned air, land and water, a "sacrifice zone."

And the abandoned factory, full of toxic waste still to this day, caught on fire last week on May 6th, which is just another infuriating reminder that this is not an event with a fixed beginning and end. Like many things that we talked about on this show, it's a much more complex and continuous disaster that's playing out in plain sight. So that's all to say that we have so much to talk about today. And I want to keep this setup short so that we can dive right in. Jiya, for listeners who are not familiar with your work or who haven't read your article, can you introduce your scholarship and talk about where this piece fits into it, and then set up what this piece argues and also hopes to offer readers as a takeaway, not just about the Bhopal Gas Leak itself, or the production and reproduction of debility in India specifically, but also about disability, capitalism, colonial extraction and empire writ large.

Jiya Pandya 5:25

Yeah, so this year, 2024, marks the 40th year, this December marks the 40th year of the Bhopal Gas Leak. I sort of came to this work and was thinking about -- my work in general looks at the way that disability as a concept is used in the "Global South," right, and I use that to sort of mark geopolitics and location rather than as a fetishized idea of Global North/Global South -- those words have history. But I came to Disability Studies because of my own experiences with disability and experiences of disability in my family, but people not really using those words, and really thinking about that gap. And it wasn't even just about translation.

I grew up speaking English as my first language and I was like, so what does this word mean if it doesn't translate across two contexts that are ostensibly connected by language, and therefore by empire. And I was thinking a lot about where disability shows up in contemporary Indian history -- India because it's where I'm from, not because I think the nation state is a sort of non-questionable entity. But I speak the languages and I'm from there. I was thinking a lot about my own experiences immigrating to the US, and about what work disability does or doesn't do.

And I was realizing that there's this strange impetus in Disability Studies to say disability is a framework, right, and this is something Jasbir Puar has talked about at length. Not everyone gets to be called disabled, because of the foreclosures of class and citizenship and race that shape who gets to be disabled when we think about it as liberal identity, yet the word disability kept showing up in Indian history. And Bhopal -- and the Bhopal Gas Leak was one of those examples where it was just everywhere. Survivors are described as disabled, and that's because they are. They have been maimed by the leak.

But I wanted to see what word disability was doing there, because it clearly wasn't being used in a sort of rights-based identitarian framework. And so that's how I came to this work to think about, well if the word disability is used, and we can't separate out histories of disability in the Global South by saying that language isn't available, when the language is being used, just to different ends, what can we make of that?

Beatrice Adler-Bolton 7:40

I so appreciated the way that you are also sort of setting up the standpoint that you're coming from and acknowledging the fact that part of what the "problem" is when we're talking about why the Bhopal Gas Leak is ongoing -- and perhaps this is a good way to sort of set up some historical context on the event for folks who especially might not have background on this -- but there's a regime of knowledge production that we talk about often in the show, sometimes we talk about it when we're talking about COVID, often we talk about it when we're talking to our co-host, Abby Cartus, about her own field of epidemiology and perinatal epidemiology, and the ways that the kind of practice and business of research and making intellectual knowledge production is itself part of these extractive regimes. And this is also very much a direct dynamic that feeds into, produces, and reproduces debilitation.

And in this specific circumstance, we're talking about a US factory that is in a different country. So you have the sort of two sovereign nations, right? You have international law, international public health. This is talked about as the worst disaster in living memory. It's talked about as something that has ended, that is not an ongoing problem. And it obviously ignores the prehistory of this site itself, the community it's located in. And you do a really good job in this piece, Jiya, just making sure to properly contextualize a moment that is framed as singular tragedy and often presented decontextualized. So I wonder if you wouldn't mind just sort of setting up for listeners who don't know a lot about this tragedy, what the sort of actual event is, and then what the larger context is when we're referring to the Bhopal Gas Leak as like a historical event or moment or tragedy or disaster.

Jiya Pandya 9:44

Yeah, well, so for a little bit of context, the Bhopal Gas Leak happened in December 1984 as an event, right, and you complicated what we mean by event here. But essentially, like just mentioned, in December 1984, there was a factory run by an American company called Union Carbide, which is now known as Dow Chemicals, which had been set up to create essentially a pesticide in India using basically raw materials which were not sanctioned in the US. They were not -- they were considered too toxic for production in the US. And India had a much more flexible regulatory regime. And so it was considered a fertile site for producing a pesticide with potentially dangerous raw materials.

And so this factory was set up in the 80s, and then a lot of local folks in sort of central India, where Bhopal is, were employed in the factory. A lot of them were already part of informal labor markets and already subject to injurious forms of labor. And they found employment at the factory, which felt really promising. It's a multinational corporation, had potential for better wages, stable income. And so a lot of people didn't really question what it was that they were doing, because it was money that they could use. And so the factory was set up near a slum on a lake. And the way the factory was set up was that these otherwise sanctioned and dangerous materials would be processed into this pesticide, and then any toxic waste would be dumped into the nearby lake, which was next to a slum where people were using the lake for drinking and cleaning water. So there's this spatial and demographic orientation to the factory to begin with, that premise, the idea that certain people in certain places, like India, were disposable.

And India as a nation state also has, of course, many hierarchies in it. And at the time, India was inviting foreign capital investments, because of this promise of developmental -- like agrarian development, agricultural development, India as a site for scientific research and progress, particularly in the agrarian sector. And between the 70s and 80s, India was opening itself up to foreign investment. India didn't fully open its economy to sort of neoliberal trade until the 90s. But limited foreign investment was allowed in the 70s and 80s. And Union Carbide came in, set up this factory in central India. Not in a big city, right? It's a smaller city in India. Employed lots of people who are already vulnerable, and then the system failed. You could argue that it's not really a failure of the system, it's the system operating as is.

But the logistical systems of the factory failed. There was a gas called methyl isocyanate, which is lethal in high doses -- actually, small doses -- was spewed, and it's a gas, so it travels. Just kind of descended upon the city because of the leak, and has polluted soil, water, people's bodies for many years since. So people died upon immediate exposure to MIC, but also have been dealing with the impacts of the gas for years. So children are being born with disabilities, with developmental disabilities, with physical impairments, basically up until today, because the gas has impacted crops that are grown in the region, water that is available to people to drink. And so there's the sort of immediate moment of vulnerability of people who are employed in the factory that experienced this tragedy, and then also the sort of lasting effects. And the people who bear the brunt of it are the people that live around the factory, and worked there. But lots of people in the city have been impacted since.

Jules Gill-Peterson 13:37

I really appreciate -- although that feels like sort of a word in bad taste talking about this, but, you know, intellectually, I appreciate the way that already you're just sort of helping us understand how to complicate the idea of this is a discrete event, versus something that both had a longer historical and material context before the leak itself. But obviously, that gives us a way to think about its ongoingness, the fact that this is an unfinished -- an unfinished event. And one reason that's really important, that you explain really well in the article, is that the leak and even just the name, Bhopal, is sort of like -- I think at one point you're sort of paraphrasing one point of view on it, that it's -- that it's rendered almost like a "dystopian allegory of globalization and capitalism," that like this is supposed to be shorthand for something.

But there's this kind of -- there's this sort of restriction, or this kind of confining, this kind of freezing of the gas leak into something that happened at a specific point in time with specific effects, that can be both understood and managed. But as we sort of move into the really wonderful, complex way that you analyze that in the article, and specifically, how you help us complicate even the concepts of disability and debility, I'd be curious if we could just sort of start with that distinction, and how based on even, for example, the account you just gave, right, like, how has the concept of disability been used, or not been used in relation to the people affected by the gas, but also what does that term then, debility, that you're working with, and in the field that you work in, like, how does that both start to bring in something important to make sense of what you were just talking about, but also, how does that begin to raise some new questions that I think you're kind of inviting us to complicate even further.

Jiya Pandya 15:36

Yeah, thanks for that. Very quickly, I think the distinction that I'm making between disability and debility draws on work by Julie Livingston, Nirmala Erevelles, and Jasbir Puar, in the field, who talk about the sort of distinction between a rights-based identitarian idea of disability or disability histories that rely on the social model of disability, which emerged in the 1960s, by a group of British Marxists and then traveled to the US, both in academic and activist circles. This idea of disability as something that is socially produced, so there is a person and their body has some sort of impairment, or they are in some way impaired, but that impairment doesn't necessitate disability. It's the fact that the built environment does not work for them that causes disabilities.

Disability exists in that relationship of someone's body and the world around them. And I think what the work that debility does, and general sort of calls to decolonize disability does is say, but what about people who are not obviously impaired or don't think of themselves as having an impairment, but experience disability in that sort of social relationship? And also, what about people who are slotted to be disposable and therefore will never be able to call themselves disabled, because their bodies are already seen as available to profit, or available to logics of capitalism and profit. And so that's the distinction that I'm relying on work by previous scholars to make there, but I think what is critical about debility as a concept and to keep thinking with it, is this temporality, right, is this idea of a long -- what Lauren Berlant has called slow death, what Rob Nixon called slow violence. This sort of never-ending temporality.

And I think what I'm -- part of what I'm arguing in this article is that in describing Bhopal in terms of disability, that long logic of debility gets elided in research, because we only think of the sort of production of harm, or production of violence as a sort of spectacular moment. And I was thinking a lot, as Beatrice was describing and as you were describing, Jules, the article about -- I think how a lot of things that we examine or think about as crisis, as a unique moment of crisis, so the COVID pandemic, but also the genocide that is happening in Gaza right now, they are not unique moments of crisis. Things don't just happen out of nowhere.

And the job of the historian, but also I think our job as people committed to a better world, is to resist that temporality and say, these things have been around for a long time. And if we don't deal with the causes of them, they will continue to exist for a long time. And so even if, you know, and I don't think this is going to happen soon, and it makes me really sad, even if the genocide ends because of sort of calls to ceasefire, that doesn't mean that the logics of settler colonialism end, like Rasha Abdulhadi said in the recent episodes you had with her.

And like with COVID, I mean, the US government has essentially declared it over and so has a lot of the world. But we don't even actually know what's going to happen with COVID. We don't even have the research to know how Long COVID is going to impact our bodies. And we don't even know how to think about what happens as our air gets less and less breathable, how these things are going to shape up, I mean -- and I do think part of the work of debility is to draw connections between these various crises" and see how we need to bring them together and think of them together.

Jules Gill-Peterson 19:06

Yeah, I love that. That's a really good way of putting it, like crisis has a certain -- I mean, it has this -- like it feels recognizable, but that's not necessarily because it's like a naturally -- it's not a natural form, right. It's a way of thinking or apprehending something that's happening. And it's partly that things are presented to us as discrete crises. And that's already like a political decision or in some cases, an epistemological or an intellectual decision on the part of people producing that knowledge. I mean, I wonder, yeah, like, it seems like part of -- part of then what debility really allows us to get into, in talking about Bhopal and the gas leak is then the relationship between, yeah, that kind of acute event, that actual -- the thing that "went wrong" and what was "going right," from the perspective of Union Carbide, or the perspective of the Indian federal state or bureaucracy.

Part of what you were just telling us that I think is really key is that the conditions in which something like this gas leak could happen are just as important, right? It's not that -- it's not only that something went horribly wrong, it's not -- right. It's also that there was like a -- that the entire purpose of building that plant in the first place in that location, right next to a lake, employing people who are already by axes of class and caste and religion already impoverished and marginalized. Like there's like a larger environment. And then there's like a more -- sort of just like a thicker set of problems for us to think about in terms of both what "caused" the disaster, but also what its impacts are and what it would mean to have a disability politics that was sort of sophisticated enough to take that on.

And it seemed like part of that is just this relationship between disabilities or debilities, like impacts from the actual gas leak. Like that we can only understand those in terms of a prior disposability logic that Union Carbide was taking advantage of, or it was sort of like the engine of the entire purpose of them being there. But that also has something to do with the post-colonial state signing that deal in the first place.

Jiya Pandya 21:21

You know, I think there's this -- there's this tension in Disability Studies, particularly when you're talking about -- and I don't know if this is going to answer your question, sort of map onto exactly what you're asking, but I think there's this way in Disability Studies in the field where we articulate logics of disability or disposability as only through the framework of empire, right, or only through the framework of the state, because the state is often the imperial state, right, the American state, the British state.

But what happens when empire is recalibrated or sort of repurposed through the post-colonial state? And I think that's a question that I'm asking in my dissertation and my work more broadly is, how do we square global hierarchies along with sort of state hierarchies that are internal, how do those two map onto each other, and then who gets harmed. And there's always a clear set of losers, right. And those clear -- that clear set of losers is often, almost always Black and brown folks, but particularly in India, right, brown folks who are Muslim and lower caste, right, that are already sort of subject to hierarchies within the nation state, that are poor, and are considered therefore available to capital. And I think what's the case of Bhopal points out, and this is not even something that I'm innovating, it's something that the survivors themselves have talked a lot about is, you see this in a lot of places.

So actually, given that this year is the 40th year of the Bhopal Gas Leak, the survivors, with support from the International Campaign for Justice in Bhopal, are coming to the US on tour. There's a group of survivors that are coming to the US on tour in September, and going to places like Baton Rouge, to build solidarities and work with communities that are also impacted by these sort of logics of disposability. They're invested in transnational solidarities that articulate how people like them are rendered disposable because of logics of capital that are both international and sort of tied to the nation state at once. And so, you know, their critiques are not only of the Indian government or of Union Carbide, but also these global regimes. And they're trying to internationalize their struggle by meeting other affected communities.

And I'm really hopeful that when the tour comes in September, we will also be able to bring them to universities. There used to be really strong movement as part of environmental justice organizing on US campuses, that included Bhopal. And I think part of the thing I was saying about crisis is it allows for this sort of cyclical consumption of empathy, pity, activism, that like phases out with time, right, we just sort of -- I'm not necessarily doing a great job describing this. But I think part of what the hope is to bring survivors to campus is to make connections with contemporary struggles or with other struggles, so that we think of these things as connected and not just new cycles, right. So our activism isn't just about what seems to be urgent, but what actually is urgent. Does that make sense?

Jules Gill-Peterson 24:38

Mhm.

Beatrice Adler-Bolton 24:39

Yeah, and I think you really point to that also in the way that folks in Bhopal have been connecting this also to the way that for example, COVID mapped on to the specific vulnerabilities that had resulted from exposure to gas. There is also a sort of deep connection here in many ways to the East Palestine, Ohio train derailment that happened. And I'm thinking back to the conversation we had on the show with Kim Garrett about that. And Kim Garrett is like an environmental scientist who studies toxins.

And Kim was talking about the kinds of risk assessments that are going on in the "mitigation efforts" and the decision to burn that and temporarily lock down the area. And in doing so, Kim talks about how one of the gases that was produced from that burn off is phosgene, which is also one of the gases that is involved in making MIC, which was the toxic leak in Bhopal. And one of the things about phosgene is that it hangs low. And it was used in World War One, specifically because it hangs low, which made it effective in trench warfare.

And I was reading some public health paper reflecting on the coming 20th anniversary of Bhopal, years ago now, and they were talking about the disproportionate impact on children and people who are of shorter height, because of the concentrations of gas being higher the lower you are to the ground. And so what we have in this kind of landscape of understanding crisis, event and disability and the kind of causal narratives that drive things like investment in care, infrastructure and treatment and research and "mitigation," right? You know, these kinds of discussions always redound down to the kinds of "hard choices" that have to be made in risk mitigation, or what is the kind of compensation that "victims" will receive? How is this going to go through the courts?

And what I think is evident in the case of Bhopal in particular is that every step along the way, the disposability is reinforced, right? This was a site that was chosen because it was predetermined as a place that was good for experimentation and risk, right? And that is a -- it ties into things like Ruthie Gilmore's description of racism that incorporates a kind of place based analysis, right? When we're talking about disability and care and preventative care and mitigation and environmental disaster and "accidents," what happened in Bhopal wasn't an accident. For years and years, there was -- there were leaks that were smaller. There were employees who were exposed to phosgene and died within three days. There were complaints from unions. There was a lot of indications, including multiple pieces of the system that supposedly failed or malfunctioned that night, had already not been working for months or offline for months, sensors were turned off, they didn't turn on the alarm in the city. So there was nothing warning people to stay inside.

So you know, it's one of those instances where I think it plays into the genre of tragedy. Every moment that there was an opportunity to sort of step up and support people who were exposed to not just this one event of environmental catastrophe, but who, by way of place and their location within society and their context, right, had been put in this sacrifice zone for years already at this point. Each moment that there's an opportunity to step up and "do right" by that or mitigate this tragedy, right, we have, again, yet another tragic outcome, whether that's the worst outcomes for folks who have gas exposure, who were born in the aftermath of that, to bad outcomes from COVID, right, mixed with the COVID response itself globally, vaccine apartheid, right.

So every kind of moment, whether it's a Supreme Court win in India for victims that's never realized, whether it's a promised pension that's never realized, promised treatment that's never realized, promised care that's never realized -- this is a story that plays into that kind of like constant cyclical tragedy. And I think what you draw attention to is just how that's happening not in spite of, but that's happening in opposition to what folks who were actually exposed to the gas are sort of demanding and organizing and agitating.

There's this kind of interesting demand around narrative and contextualizing what actually happened that seems to be a point that the state really is resisting, right? There is desire to sort of cover this up and put some sort of closure on this which, again, like ties back into so many other public health or health disasters or things like that, whether we're talking about Hurricane Katrina or COVID, where part of the production of it as tragedy and as event is also this kind of pre-foreclosure on any kind of resolution, justice, deliverance from the actual circumstances of slow death that have been imposed on people.

Jiya Pandya 30:23

Mhm. No, and what you were just saying there I think gets to an argument that I think is really important that activists from -- survivor activists from Bhopal are making, which is that these things are simultaneously specific and local, and also sort of global in scale, right? So there's this multi-scalar impetus to their activism that insists on specificity, but also is saying, look, this is a much bigger issue and therefore, justice will involve much bigger solutions, even as they're looking for housing, free healthcare, right, all those sorts of things.

And I think it's a strength of their activism that is multi-scalar. And I think what is produced in this continuous cycle of -- in this continuous rehashing, right, when they're not being able to access healthcare, when they not -- you know, when they're told that the stipends that they got were, -- you know, the pittance stipends they got were plenty enough for an Indian by spokespeople for the company. In articulating that their fight is against this company but also companies like it, they're articulating, I think, a much broader struggle that I don't think is being articulated -- I think it's being articulated abstractly within the bounds of the university, but I think that basically, that Disability Studies -- and Jasbir Puar are also mentioned this in the episode that she was on on Death Panel, we haven't really contended with what an anticolonial disability politics looks like. But those examples are there. And you don't have to look that hard, because they're making -- they're doing the work for you. They're making these connections.

And I think a big part of what you were talking about, with the sort of continuous rehashing, the cycle, is something that you and Artie talk about in your book about this, this idea of extractive abandonment. There is almost an industry around talking about Bhopal -- I'm talking about Bhopals, events or moments like this that quote unquote "happen," that don't actually address the broader scales that shape something like this, right. So they rely on specificities to elide the broader fight for justice that survivors are calling for.

Beatrice Adler-Bolton 32:39

Absolutely. Would you be interested in talking about that point you brought up right at the end, which I think is very important, of the kind of economy that has sprung up over both the study, narration, the aid and research and treatment, right, and the kind of industry of talking about Bhopal that has popped up, because I think this is a really important point and gets at the core of what you're arguing in this piece.

Jiya Pandya 33:07

Yeah. I mean, I -- so essentially, just to give a little bit of context, right after the leak in 1984, and well into the 90s, there was medical research, there were groups like Amnesty, like Western humanitarian groups, Indian humanitarian groups, researchers from universities, all coming into Bhopal, saying we need to figure out how that happened. We need to make sure it never happens again.

Amnesty actually just published, because of the 40th anniversary of the gas leak, a paper talking about what is going on. And these things are useful, strategic, in service of survivors. A lot of the medical research that happened right in the aftermath of the leak, which is what the article addresses, is about figuring out how MIC impacts the body and making sure that it gets cured or relieved in some way.

And that's not inherently bad. Like I'm not making a moral argument. But I think what I am saying is that kind of research and the proliferation of that kind of research often happens at the expense of what people are -- basically like research has to create priorities, or sort of humanitarian work has to create priorities, and in creating sequestered priorities, misses the broader connective forms of justice that are actually necessary in situations like this. So it's great that Amnesty has a report. It's great that medical researchers came in, but when you read the pages of the International Campaign for Justice in Bhopal, the women's union that works there, they're pushing for the things that are articulated in the Amnesty report and in the medical documents at the same time.

And so I think there's this impetus and I think this is something that we're really guilty of, I'm really guilty of as an academic, this like focus we have on mastery in the academy, and it is a imperial academy that has now become sort of hegemonic.

Our focus on mastery means that we have to create more sequestered forms of thought, and that also means more sequestered forms of justice. And I think that's part of the thing that I find provocative about debility in the way that Puar articulates it, but also I think I want to push a little further, which is, how are we compounding debility by pointing to debility, right? What would it mean for us to think with debility, and think with the people that are experiencing debility, without having to name things, respond to -- you know, what if -- what if we had to -- what if we could move past the academic moves that we have to make in research to actually address debility and think about people who live within it?

Like, I think we have to do more than just say, there is disposability, there is debilitation. Now what?

Jules Gill-Peterson 35:56

Right. Because that's already -- you know, there's already, as you're saying, a whole cohort of professional researchers who -- many of whom, yeah, are employed, or who are, let's say, charged with producing that knowledge, either by the state or by international NGO kind of organizations, and that that body of knowledge has really frustrating political effects. I mean, there -- I wanted to ask about a couple of the specific ways that the academic literature or just like scientific and state funded research has operated because there was just this moment where it really got me going, both as a historian, but also, obviously, as someone who works for a university.

You talk, for example, about the production of medical model disability sort of literature, out of studies, and one of the methodologies of those studies is that they're -- you know, you say they're very -- they massify, they sort of aggregate things. And so instead of individual people, or actually even like groups of people who have internal differences, right, of whatever -- it could be gender, income, caste, so on, you know, maybe where they live physically, geographically. Instead, you get like these long symptom lists, you get these statistical prevalence data points. These really sort of abstracted, but also kind of these conglomerates sort of like, I don't know, blobs of data.

And I'm curious if you could say, one, maybe sort of like, what is the objective of the state in acquiring that kind of information, or in like service delivery organizations, like, what are they doing with this kind of massified information, but then I think part of what's so disturbing about it is it -- it is this like post-colonial iteration of just such colonial kind of -- it's like the expression of a classic kind of colonial relationship that British colonialism in India prior to independence is often sort of like one of these examples.

I mean, I remember learning about this in my undergrad degree, you know, the kind of massification of the colonized population. And really, the way that that, especially for -- for the British, was this sort of deeply racialized kind of fear and terror of like the masses of Indian society as this sort of scale problem for the British, but then the way that academic sciences sort of tried to turn that racist fear and anxiety into a pretext for colonialism, through kind of like producing the power to understand the so-called mass, right, whether that's society or whether that's a group of people who get sort of turned into something totally dehumanized.

In this case, a set of symptoms, or a set of prevalences, or at one point, you talk about a series of different debilitated body parts that are kind of like cleaved from the people to whom they belong, and are sort of disaggregated. So I'm just sort of curious, like, yeah, I guess one, what's your sense of why that kind of massifying knowledge is produced according to the logic of the people producing it, or like for the -- for the state, for people involved in "managing" the ongoing effects of the gas leak, but also, yeah, how does that to you sort of reveal the central problem for academic knowledge production, the way that even if you're producing knowledge ostensibly, you know, to redress or ameliorate something, that doesn't mean it's free from this kind of literally just colonial power relationship.

Jiya Pandya 36:12

I think to the first question you were asking about why the Indian state, or why universities aren invested, and I think this is something about like the medical establishment more broadly, about like the role of health and the state, why they're invested in acquiring that sort of information. I think there's a very particular post-colonial phenomenon that I don't think is unique to India, but I'm not necessarily equipped to talk about.

I think a lot of parts of Africa, other parts of Asia that sort of emerged from colonialism into being nation states, sovereign nation states in their own right, and I think there's this impetus to say colonialism, right? Fanon talks a lot about this. Colonialism damaged us in some way. And so we have this impetus, as we forge an independent nation state, to create an able bodied nation. And that ableness is tied to sort of throwing off the yoke of empire. And so Eunjung Kim does a really good job talking about this in her book, Curative Violence.

But there is this sort of post-colonial impetus to say disability was colonial, and so the post-colonial state has this impetus towards cure and a healthful population. And, you know, I don't think -- I think we have a lot of really valid critiques of cure. But I do think in an instance like the Bhopal Gas Leak, survivors want to not be in pain, they want to not feel so hurt, they want their bodies not to be completely banged up, they want their kids to be able to survive and go to school. And, you know, those are -- those are valid asks. And so I do think there's this moment in post-colonial Indian history where an impetus to cure, an impetus to like social medicine that is community forward, that is driven by people, and their desire for health comes from a generative anti-colonial place.

Whether or not that is not also steeped in ableism is a separate question. But I do think that like impetus is because -- because we don't know how to imagine a world without -- like we don't know how to imagine a disabled world, even though we live in a disabled world. And so also, this ideal of health that post-colonial states are aspiring to is one that's prescribed by colonial states, right, like the model we have of the nation state is the colonial state, that post-colonial states are coming into. And so what would it mean to imagine differently?

And I think, you know, the central problem of academia is, we can ask that question, but I don't know that those of us that are lucky enough, that are privileged enough to make it in academia, know how to answer it. And I do think that's a central problem. I think there's also the problem of like, why do we do research, right? Like, is the goal of our research to render ourselves irrelevant? And I don't think it often is. I think it should be. But I think the sort of industry, the humanitarian industry research, medical research that happens after Bhopal, but I think also contemporary research in disability, I think a lot about this as a historian of the 70s and 80s, like you Jules, like what -- these things are so close in time to us, right? The AIDS crisis is -- it's so -- it's still here, in time. And so when we write about it, what are we doing? Are we just telling stories? Are we -- why are we telling these stories?

Are we -- you know, are we trying to get people to see what is going on so we don't make the same mistakes? Are we trying to understand the logics of where we are now? And if we are, what would it mean for us to make ourselves irrelevant, right? Like, what would it mean for the historian or the researcher of the humanities, the sociologists, the anthropologists to say, we don't need mastery, we don't need expertise, right? We need to be thinking differently about the university, we need to be thinking differently about mastery, we need to be thinking differently about research. And that comes from a very present frustration I have, a frustration I had for the two years that universities still cared about COVID.

It's a frustration I have now with students encamping across the country. I went to a conference a couple of years ago, the American Historical Association, I saw a panel where there were a bunch of historians talking about the role of the historian in the current political moment. And they went on and on and on. And finally someone got up and said, well, if historians want to be political, they should just be political, like go to protests.

Jules Gill-Peterson 41:50

Imagine!

Jiya Pandya 42:02

Like, do the work, you know? And I think that's where this article comes from, that's where I think a lot of this frustration comes from, is we can spend so much time thinking about how the research we do is complicit in all of these structures. But what are we then doing to dismantle them in our classrooms? What are we then doing to dismantle them beyond the university? Beyond our research? Yeah.

Beatrice Adler-Bolton 44:39

So well put.

Jules Gill-Peterson 44:39

And especially when the structure is research, right? That's like -- I think you really raised this dilemma so elegantly, but also so urgently and convincingly, right? Like there is this -- there are projects of research underway that are contributing to the slow violence in Bhopal and they're embedded certainly locally, or in particularly the post-colonial Indian state, but that doesn't mean that research going on elsewhere is disconnected. Not at all.

And especially when it has to -- when it's employing that similar method. Yeah, that kind of question of like, where does politics happen? Is it the thing about which one writes, or is it the thing that you're trying to do while you're researching and writing. And like, yeah, I appreciate that -- I really appreciate that you're drawing our attention to that really thoughtfully. You're giving us something to chew on. But you're not -- you're not precisely not pretending that there's a programmatic answer, but rather, that it's -- this is a problem worth dealing with much more directly.

And also, you do offer some concrete ways to do -- like, actually very concrete. It was very refreshing to read that in an academic piece, being like, wow -- I'm sure we'll get to that -- but this piece ends with suggestions for the reader, like things that the reader could actually do. That's, yeah, not something that happens a ton, and especially not from historians, because, you know, regardless of the period that we work on, the profession can always fantasize that history concerns the past and therefore, it's interesting to think about, but you don't really have to do anything about it. But that could really describe pretty much anyone in that class structure that is the academy. But anyways, I don't want to digress into that.

Jiya Pandya 46:28

You know, just going off that really quickly, I was thinking a lot of what you were saying about is the research to do the politics or is the politics the thing we're researching about. And I think in this piece, you know, I'm talking about medical research, it's easy to go at doctors, right, you know, as someone that is disabled, thinks with disability, we know how to make that critique. And I think it's an important critique to make.

But you know, what about going at ourselves and saying, what is the function of critique now? Like, what is the function of critique 40 years after the Bhopal Gas Leak, when survivors are going to be in the US in September? Is our job than to aid critique that's already taking place, or is our job to like rehash critique, right? Like I think those are -- and that's a very basic academic question, right? It's like basic, you know, should the self be included in anthropology research kind of, you know, we've talked about self reflexivity, that's not what I'm talking about. But I think like, what -- you know, as I do this critique, I wrote this piece in 2019, it's been five years.

Now this group of people that is articulating these things that I think are really prescient, are going to be in the same country as me. Like I think my job then is to make sure that they're getting airtime. But also like what happens with airtime, right? I think that's something also that I really struggled with while I was writing this piece, and something I struggle with in my research in general, as I think about all the ways that disability is being used by people, to all kinds of moral ends of their own.

Beatrice Adler-Bolton 48:00

Mhm.

Jiya Pandya 48:00

We can keep talking ourselves hoarse about this, but like who are we talking to? Why are we talking? You know, and I -- I think I sound really nihilistic when I say this.

Jules Gill-Peterson 48:11

No. I mean, it's like, yeah, I was just thinking when you said, sure, it's very basic, but I think often the things that are basic for scholars are things that scholars don't want to ever act on because of their ideological determination. And so they just become things to talk about forever, precisely to avoid -- I don't know, that's only slightly paranoid on my part. But I think you give a really concrete example too, about what the difference is between taking seriously what survivor activists are asking for, and that's, in part, not only, but in part because the broader scientific and medical literature, and also state policies and medical and aid organizations, kind of all have this sort of baseline assumption that survivors are, as you point out, like non-knowers, that they don't know things about their lives.

They don't know things about basic health practices. And that there are these tropes that you identify, tropes of untrustworthiness, of -- that verge on kind of caricatures of backwardness, often that afix specifically to poor and disabled or low caste and Muslim Bhopalis, you know, that the reason to do this research in the first place is precisely because the people whom it concerns can't or don't know anything. That, again, just like feels like a reiteration of the most colonial form of knowledge production possible.

But you know, here it is continuing. So it already is like a form of political warfare. It's a form of state warfare against this population, even as it's claiming to represent them. And if there's -- and maybe like the gentlest, most liberal version is that kind of vanguardist, like I've got to do this research to help -- you know, I'm helping these poor people who can't help themselves. And there's so much bound up in that, right?

And it's like very, very specific, I think, in this context to maybe like the post-colonial state and to Indian politics, particularly maybe in this moment in relation to Hindu nationalism, but also like because the academy is global, because of the history of colonialism and imperialism, like these are structural dynamics that confront scholars doing research as well.

So for you to make that choice, right, that I want to think of a relationship of solidarity to survivors and activists, rather than just doing research on them, or in sympathy or whatever the other model would be, right, like, that's a real tangible difference. I just really wanted to underline that because I feel like that's part of what -- I don't know, it's just part of what feels really clarifying, right, for all of the important work of complication and refusing simple answers and narratives, there actually is something pretty clarifying about being able to draw that contrast around, are you working towards a relationship of solidarity with the people with whom you're writing, you know, or are you -- yeah, and how that matters is so, so profound in this case, because of this broader prior -- or an ongoing literature that just like cashes in on the idea that the people who have endured and survived this devastation themselves know the least about it, which is just absurd, right, on its face.

It's just -- that's just absurd. But that has like calcified into a truth over a long time.

Jiya Pandya 51:40

Mhm. It's the same way that queer and trans folks are told that they know less about their bodies than the like hordes of doctors that descendupon our bodies, right, it's the same. But the thing you were saying about class warfare was really sharp. And I think to take it a step further, I think there's also an element of class warfare in even being like I -- you know, these people haven't been trusted, my job is to make sure -- to point out how they've been rendered untrustworthy, right, to like point to these dynamics of class warfare, but then also not take the next step, right? This is what I was saying, like debility is insufficient unless you're building a politics, kind of how you talk about, Beatrice, in Health Communism, build a politics out of that surplus, like build a politics of the surplus, a politics of the sick. Yeah. Just to -- sorry, just a quick -- yeah, just like I've been thinking a lot recently, and we don't even -- we don't need to include this, or if you want to, you can, but I've been thinking a lot about how many people write about colonialism, or you know, so many people I know in Disability Studies spaces, we're writing about disability, and then were confronted with COVID and didn't mask at events. And so many people are writing about empire, and then think the protests are just a little unruly, you know? And it's --

Jules Gill-Peterson 52:57

Mhm, mhm.

Jiya Pandya 52:58

It's this like abstraction that we have from our work, that I think like academics don't recognize that there is a class positionality to being in the academy, particularly in the West. I do think Indian academia is slightly different, but also really tricky right now, given that a lot of like independent academia is under attack from the Hindu right. And I think we're confronting that slowly in the US. But a lot of us in private universities haven't felt the brunt of that yet, the way that people in public universities across the country, both north and south, are feeling it.

Beatrice Adler-Bolton 53:30

Yes. There have been so many things that have been running through my mind throughout this conversation. And one of the reasons why, Jiya, I wanted to ask you on to talk about this piece, you know, this is published in Disability Studies Quarterly, it's open access disability studies journal. We'll link to it in the episode description. Please go and read the whole thing. There's so much in there that we're not even gonna get a chance to touch on today.

But it has a very specific lesson in the section on diagnosis and debility that we talked about and touched on briefly, sort of checklists and the massification of coalescing a biomedical boundary around who qualifies as a "gas leak victim," and who doesn't. And it reminded me, you know, you get into some of the arguments that ensue around how resources should be used towards research and treatment, and the kind of standardization of treatment and the harms that are produced, both in terms of restricting what becomes available for folks to use to mitigate their pain and literal suffering that comes from these experiences of these impairments, which while they're driven by the same toxin, are expressed completely differently across a variety of different people and different types of exposures, right?

So there's a kind of collapsing in the standardization and the creation of the sort of boundary category around who qualifies and how to treat that group and sort of an over collapsing of the treatment options that is very reminiscent of the early years of activism in the HIV/AIDS epidemic around treatment and data collection and around the investment of research, right, where you have AZT is killing people faster than people who are not on AZT who are in the same stage of disease progression. And activists are pushing researchers to research anything but just AZT.

And researchers at this point are protective over the NIH grants that they've gotten to research AZT and have a timeline, right, for continuing these AZT projects. And there's a sort of conflict of interest that's described that actually is a much bigger political economic force that ultimately is revealed in this moment. And so my thought was like this is such -- this is a very important conversation. And also folks currently in the Long COVID community, who are thinking a lot about research, treatment, demands, movement demands, who are trying to turn to various points in time where you've had large patient groups suddenly emerge after an event, that they're sort of looking to inform their own demands. And I felt like this was a fantastic resource for folks in that respect.

But then hearing that the Bhopal activists themselves are going to be in the United States, specifically trying to build these connections, you know, it's even more important and potentially useful for not just in the way of like shaping Long COVID demands, but those -- you know, sick folks, people who live with impairments, this is what we do for each other, right? Like, we share what we've been through to try to use our own embodied expertise and knowledge that has in many cases involved tremendous, protracted, endless pain and suffering, to help our fellow impaired and sick and disabled and whatever friends experiencing pain and suffering, shortcut their way back to baseline.

There's all these moments of sort of informal breaches of the boundary of diagnosis, where you have people coming together in communities like the Death Panel Discord, where you have a community that, yes, there are a lot of sick and disabled people in that community, but it's not exclusive. It's not just one diagnostic category. This is not a support group, right. And folks are sort of sharing their experiences and workarounds, and shortcuts, and ideas, and reactions, and tips, and all of this sort of across diagnostic category.

And it's a tremendously powerful sort of social force that is totally outside and beyond many of the kind of traditional networks and more formal networks that I think people think of when they think of advocacy or something, right. When you think of the disability movement, you think of the response to polio, where there was, in many cases, a very narrow expression of the disease in the people who were exposed, right?

Yes, there were different degrees of severity and different ways that people were affected, but not in the kind of way that we're seeing with Long COVID. Not in the way that we continue to see with Bhopal. And I think that there's just such a tremendous potentiality here for disabled people and impaired folks and sick folks and the surplus and subaltern to come together in the way that we often do to help each other sort of shortcut the suffering and the pain that we associate with the idea of cure or treatment, right, but which so often, for whatever reason, due to the limitations of scientific knowledge, research, access to care, the distribution and provisioning of resources, both pharmaceutical and otherwise, so few of us actually ever get the sort of explicit access to relief and find what we can through these relationships.

And so I think it's tremendously inspiring to think of the kinds of connections that can be built from this opportunity to build relationships between Bhopali activists and Long COVID activists, for example.

Jiya Pandya 59:40

Mhm. That's actually such a great idea. And we should talk more about, I think the tour potentially meeting with Local COVID groups, even if it's virtual. There'll be translation that needs to happen between Hindi and English, but that's a really interesting idea that I think we should pursue. Yeah, I think in general, like to listeners, if there's a group that you think would benefit from collaborating with, talking to the survivor tour when they're here in August and September 2024, feel free to send me an email. I will -- I can share it with you guys. And then we can see if we can make that happen. There's no itinerary yet. So I think that the ICJB would be really interested in that.

The other thing, the thing I was gonna say about, you know, the thing you were saying about AZT and Long COVID, and people not wanting to give up their NIH grants, you know, I get it. Like I understand wanting to have a job. I understand wanting to do the work you want to do, like I selfishly understand all those things. I've been thinking a lot about risk with the current protests. And I know that I've been assessing my risk based on whether I can actually put my body on the line, with like visa stuff and things like that, right.

And those are selfish decisions, but also like, what would it mean for us to recognize that that's a dynamic and then push that research, right, think with that, to make it useful? And I think that speaks to like a general crip ambivalence is what Alison Kafer describes it as, with -- and you know, something Dean Spade has talked a lot about with transitioning and gender affirming care, right? A lot of people who are caught in these structures have to navigate these structures strategically. It's a thing third world feminists talk about with sort of oppositional consciousness was the phrase used.

How do we think with -- ambivalently with diagnosis, ambivalently with law, ambivalently with research, while also pushing for something bigger? And I don't know the answer to that, but I do think that that'll come out of the conversations that you are suggesting, Bea.

Jules Gill-Peterson 1:01:49

I really, really love everything you just said. I mean, you've been really -- you've really helped us understand a critique of expertise, a critique of like -- yeah, like a liberal charity model, a state technocracy, bureaucracy, administration, or even a public health or a medical model, all these forms of expertise that make a very deliberate claim to their superiority and their -- the sort of righteousness of the form of government and control of people that comes about through them. But part of what's challenging, right, is that you can then make a political intervention to value, for example, the knowledge and the expertise of survivor activists, not because it's uniform, but precisely because it has a different vision of need and of healing, or of a better way of life.

But part of what remains that's really challenging, and this really does speak to the question of like how the state functions today, is about the unequal distribution of resources. There's expertise in terms of knowledge, but then there are also like the meaningful, literal material resources that people want and are demanding.

And that's what I was thinking, like those are lessons certainly from the first decade or two of the AIDS crisis, obviously, that like the successful -- in the United States, successful AIDS activism really changed, in part, the development of drugs, R&D, and clinical trials, which was both an incredible achievement and yet very ambivalent, because in some ways, the state and the private medical market and so many scholars with grants and careers entangled in that, made a real play of incorporation and folded those people in and it -- you know, I think a number of historians have kind of assessed that being partly why really radical AIDS politics and organizations kind of were successfully demobilized a bit by the state. It's not the only reason, right. But that's like one example.

And you know, in this case, right, talking about material demands for resources, which is so often how I think of medical care is just like a resource, like it's a material thing, that is very -- that is intentionally made scarce and unevenly distributed. And often political demands are for more resources to flow, but then this kind of question comes up about like, and also how do you -- like who gets -- what does even community control of those resources look like?

Jules Gill-Peterson 1:01:50

Well, and I appreciate the call to action at the end of the piece, the echoing of Jasbir Puar's words of creating conspiratorial affinities, right? And you end with this fantastic quote. I'm probably gonna butcher this name, so please let me know. I have a British voice on my screen reader, so it's like very racist [everyone laughing]. I like hear terrible pronunciations over and over, so I'm always like, oh my God. There's a quote from Hajira Bi that you end your piece with and I was wondering if you wouldn't mind contextualizing that quote, and who she is, for our listeners, and then reading that quote?,

Jiya Pandya 1:05:02

Yeah, so the quote is,

Do not refresh my wounds, do not treat my tears as water, do not consider this as a cassette that is playing and repeating . . . I give these interviews thinking that if our fight can gather strength and my voice goes far and if after watching this someone is being motivated, or has feelings of empathy in his heart, and he adds his strength to the fight, maybe Bhopal gets justice soon.

And so for context, Hajira Bi is a Bhopali activist and survivor of the 1984 leak and an activist with the International Campaign for Justice in Bhopal, which is also an amalgamation of multiple organizations within Bhopal. And she's been interviewed a bunch by groups like Amnesty and for a variety of documentaries, and has been protesting for justice in Bhopal for like at this point, you know, 30 odd years.

And her quote really comes from the place of the fact that I think the survivors of the Bhopal Leak have talked about it for a long, long time, and still haven't gotten a lot of what they're asking for. And so I think what you were -- I think that the tour that they're doing in the US this year, the 40th anniversary, you know, I think their goal is to not have a 50th anniversary where they're doing the same thing. And I think your suggestion about connecting with Long COVID groups is a really great one. I just want to reiterate that if folks are interested in connecting the tour to an activist group that they're a part of, or a campus, or anything else that I can't think of right now. I'm happy to connect the group to people that are interested in talking to them, working with them.

Beatrice Adler-Bolton 1:06:41

Hell yeah. I think this is such a good idea. So listeners, you can email us, we will put you in touch with Jiya. And I really appreciate, Jiya, the way that you have pushed it and the work that you've done on this piece. And I mean, it's -- I can't believe we didn't even get a chance to talk about the section where you get into crip modes of survival and things like that. There's so much more here. And I really, really enjoyed our conversation today, and I wish we had like two more hours to go.

Jules Gill-Peterson 1:07:07

For real.

Jiya Pandya 1:07:08

Yeah, I'm like really invested in coming back and talking to you guys, as the dissertation -- because I feel like you would both --

Beatrice Adler-Bolton 1:07:14

Hell yeah.

Jiya Pandya 1:07:13

I would love your thoughts on it. Like I'm literally writing -- I just finished a chapter on leprosy in like the 20s to 70s in India, and particularly on Gandhi and how nationalists describe people who practiced caste untouchability as moral lepers, who then also did lots of caste shit. Yeah. I mean, there's like -- it's wild. I don't know if you feel this, Jules, but I don't even have to look that deep in the archive to find this -- [everyone laughing]

Jiya Pandya 1:07:16

Right.

Jiya Pandya 1:07:21

To find their shit. It's like right there.

Jules Gill-Peterson 1:07:44

Oh yeah. It's always the thing that is the most -- the most prevalent in the archive. And therefore, scholars have conspired very carefully for decades to completely ignore.

Jiya Pandya 1:07:57

No, I know, it's like, you know, we have this whole like reading against the grain thing for writing subaltern studies, and a lot of -- and I think that that can be really useful. But the stuff that I'm looking at, the just sort of ableist vile-ism of the nation-state and international aid organizations, you really don't have to look very hard.

Jules Gill-Peterson 1:08:14

It's not even the grain. It's the macro, right? It's just like the entire -- I know, I know. No, I totally understand what you mean. Well, I'm so glad that you're doing that work and cannot wait to talk more about it. Wow.

Beatrice Adler-Bolton 1:08:26

Yes. Likewise, I think that's the perfect place to leave it for today. Jiya, thank you so much for coming on the show, and folks involved in community organizing, you heard your call to action, get in touch with us. We'll put you in touch with Jiya.

And patrons, thank you so much for supporting the show. We couldn't do any of this without you. To support the show and get access to our second weekly bonus episode, become a patron at patreon.com/deathpanelpod. And if you'd like to help us out a little bit more, share the show with your friends, post about your favorite episodes, pick up copies of Health Communism and A Short History of Trans Misogyny at your local bookstore, or request them at your local library, and follow us @deathpanel_. Patrons, we'll catch you Monday in the Patreon feed. For everyone else, we'll catch you later next week. As always, Medicare for All now. Solidarity forever. Stay alive another week.

[ Outro music ]


Transcript by Kendra Kline. (Kendra is currently accepting freelance transcript work — email her if you need transcripts or visit her website)

Previous
Previous

Water for Gaza (05/20/24)

Next
Next

Refusing to Forget w/ Vicky Osterweil (03/21/24)