Aaron Goodman: Welcome to the Chemical Sensitivity Podcast. I'm Aaron Goodman, host and creator of the show. I'm a long time journalist, documentary maker, university instructor, and communication studies researcher, and I've lived with Multiple Chemical Sensitivity or MCS for years. MCS is also known as chemical intolerance, toxicant induced loss of tolerance, or TILT.

The illness affects millions around the world, and the number of people with MCS is rising just about everywhere. Living with MCS means dealing with a range of overlapping symptoms, including fatigue, shortness of breath, difficulty concentrating, muscle and joint pain, headaches, eye irritation, confusion, memory loss, rashes, and more.

Trace amounts of chemicals and synthetic fragrances in household and personal care products, pesticides, paint, construction materials, cigarette smoke, and more can spark a cascade of debilitating symptoms. Finding accommodations can be very complicated. Dismissed by healthcare providers, employers, and even loved ones, many feel misunderstood, isolated, and invisible. This podcast aims to change that. We delve into the latest research and speak with all kinds of people impacted by MCS. You'll gain important knowledge, a sense of validation, and learn about navigating the realities of MCS. We also explore wider issues connected to toxic chemical pollution and how individuals and communities are pushing back against it and the harms it causes.

In this episode, I'm speaking with Noah Theriault, PhD. Noah is an associate professor of anthropology in the Department of History at Carnegie Mellon University in Pittsburgh, Pennsylvania in the U.S. He's author of a fascinating 2021 article titled "Toxic Research." It was co-written with Simi Kang, PhD, assistant professor of gender studies at the University of Victoria in British Columbia, Canada. In our conversation, Noah explores the paper, argues that collaborative research on toxicity and other structural forms of harm can and should contribute to collective action for social and environmental well-being.

Noah talks about how racialized communities are disproportionately affected by toxic chemical pollution and how many communities are used as toxic sinks for production and disposal of chemical waste, and how many are ignored by medical and legal professionals. Noah talks about how it's hard to escape toxins in capitalist culture, but how some communities are pushing back.

It was fascinating speaking with Noah. I'm excited to share the conversation with you and I'll share a link to the paper he co-wrote with Simi Kang on toxic research in the episode's show notes if you want to check it out. 

Aaron Goodman: Welcome Noah. Thanks for joining me on the podcast.

Noah T: Thanks so much for having me, Aaron.

Aaron Goodman: Noah, your work really focuses on environmental injustice. And I wonder if we could unpack that and talk a bit about environmental injustice when it comes to toxic chemical pollution. I often hear that racialized communities, people who are black and brown, and people who are economically disadvantaged are disproportionately impacted by toxic chemical pollution in a North American and also global context. Can you remind us a little bit about how this manifests and why, and maybe a couple of case studies to really make it clear for me?

[00:04:00] Noah T: Sure. So the concept of environmental justice really emerges out of the civil rights movement in the United States with Black activist communities, as well as Latinx activist communities in different parts of the country, often pushing for better protections for workers. And the environmental justice movement has grown from there to take on a variety of different issues. You can think about environmental justice from an analytical standpoint as having multiple different dimensions to it.

There's the question of distribution. So how does the distribution of things like toxics or good things like green space, how do those distributions track broader distributions of power and privilege in society along the lines of race, socioeconomic class, gender, right? There's an inverse relationship between wealth and power and exposure to toxics and the opposite is true or vice versa for environmental goods like green space.

There's also a representational dimension to environmental justice, who has a voice in policymaking, whose conception of what the environment is and why it matters is authoritative, who can shape those kinds of cultural conversations beyond just like the legislative or policymaking realm. So in my own work in the Philippines, for example, one of the concerns that I study is how indigenous peoples' conceptions of the environment, their intergenerational relationships with the landscapes that they live in, and the cosmology that underlies that, or the sort of understanding of the world that underlies that, is systematically excluded from the policymaking process.

So when those communities are asked to participate in conservation activities on their land, efforts by non-governmental organizations and the government to protect the forest, when they're asked to cooperate with those kinds of conservation activities, it's all premised on an understanding of the environment that is different from their own. And in order to participate, they have to communicate in a way that makes sense to these powerful institutions rather than on their own terms. And so that would be an example of a representational injustice in an environmental context.

[00:06:23] Aaron Goodman: You write about what's happened in Flint, Michigan with the water crisis. Can you talk a little bit about what happened there, how it is impacting racialized communities and some of the forces and dynamics that led that to become such a serious issue?

[00:06:38] Noah T: Yeah, so what happened in Flint was that part of the city's water system was outsourced and they made some changes to save money to the water system and that triggered the release of large amounts of lead into the water system from old lead pipes. And that affected the city's residents, particularly marginalized, black residents. This became sort of big national news because the people there were calling attention to the fact that they were being poisoned by their own water system as a result of this. It's both long-term neglect, disinvestment, but also this more recent decision to turn the city's water system over to a private entity.

That is a very clear example of environmental injustice because it reflects both how a harmful thing in the environment, in this case, lead in the water, is unevenly distributed, but how that investment in water systems, investment in housing, investment in communities, reflects racial inequality as well. So you can see how those two sides of the distribution coin relate to one another in that case.

[00:07:48] Aaron Goodman: A lot of people listening have experienced misdiagnosis and dismissal by medical professionals and sometimes legal professionals, lawyers, and you write about this. I'm wondering if you could maybe touch on it a little bit. Why do you think people who are impacted by toxic chemicals are frequently dismissed by doctors and lawyers and policy makers and corporations and others?

[00:08:16] Noah T: Yeah, that's a really good and important question. I think on the one hand, toxics are understood scientifically in isolation and using these sorts of standards of scientific research and evidence to decide whether a particular toxic has a certain effect on a body. Those bodies are also often treated without due attention to the social structures and the fact that differently positioned bodies will manifest the effects of an exposure differently. And so that leads to evidentiary standards that are very difficult to achieve in real-world conditions where you have so many different confounding factors and variables involved.

It's not just that it's difficult to prove a certain effect from a toxic. It's that it's inconvenient to do that for powerful interests. The fact that these evidentiary standards and research protocols and regulatory systems are the way they are isn't inherently a product of toxics themselves, but rather by design, because it helps to insulate those who benefit from the production, distribution of these toxics into society, it protects those interests from liability.

[00:09:40] Aaron Goodman: So on a practical level, for example, if we really break this down. I bring my children to school. We don't know what the floor cleaner might do with someone's hairspray, for example. How those two products may interact, right?

[00:09:58] Noah T: Absolutely, yeah. A school may use a substance that has been deemed non-toxic to clean the floors, but of course there's other substances coming in that interact with that. They may also use one that is known to be toxic, but that as long as you're not getting it on your hands, et cetera, you're okay. Of course, children would put their hands on the floor, touch other things, might cause some sort of an interaction there as well. And it's those kinds of complexities that typically do not get either researched scientifically or regulated in any kind of a direct way and that contribute to a great deal of uncertainty particularly on the part of folks who are concerned about exposure to toxics. How do you even know what the effect of a particular toxic will have on your body when you're thinking about it interacting with so many different things?

[00:10:51] Aaron Goodman: Yeah, and I think we could spend a long time talking about regulation, right? And how is it that so much of the chemicals that we're exposed to on a daily basis are available and sold when we know they're not safe? So just as an example, and I rarely talk about my own lived experience, but in my children's experience, they do an extracurricular activity and the floor cleaner is bright yellow and has a sharp smell and I certainly react to it and other people react to it and a lot of people don't want it there, but it's still there after a lot of advocacy. How is it that this can happen that a product we know is unsafe is so widely used and we're talking about thousands of products, how can it be?

[00:11:43] Noah T: It's about power, I would say it is, the United States compared to many of its sort of peer industrialized nations has relatively, I would say, lax regulations around the distribution of chemicals in the environment. There are tens of thousands of chemicals known to exist that have been produced at various points in time, very few of those have been studied in depth and very few of those that have been studied in depth are actually regulated in any kind of a way that restricts their distribution.

This reflects the sort of laissez-faire mentality that the United States tends to bring to these matters, both that the burden should be on those who are exposed to prove that something is harmful before it will be limited rather than some kind of a precautionary principle and also the burden on the society as a whole to react to the chemicals that are released and tested on us. In, in natural experiments without our consent, as far as I know, there's no requirement that new chemicals that are put on the market undergo rigorous testing. In most cases that comes rather as the result of scientific researchers and advocates and others taking up that task, putting all of that burden on society and on individuals rather than on both the government and the for-profit producers of these chemicals is part of my obsession.

So difficult oftentimes to know if a particular substance is toxic, but also to do something about that once it is known or suspected.

[00:13:19] Aaron Goodman: It's not lost on me that we're talking about, and you're referring in your research to marginalized people. And I am, I identify as a cisgender white male. I live with the chronic illness of chemical intolerance, Multiple Chemical Sensitivity, but I have privilege in other ways. And I thought we could maybe just touch on that for a moment, if you like.

[00:13:41] Noah T: Yeah, absolutely. There's the sort of famous quote that thinking a problem isn't a problem because it doesn't apply to you, you know, as a form of privilege. And I think living in a city like Pittsburgh, where there is pretty ubiquitous air pollution as a result of these legacy industries and the development of new ones now as well, particularly the buildout of petrochemical industries here related to the fracking boom. Everybody's exposed to that on some level, but not everyone is exposed to it in the same way. It's not enough to just try to protect myself even more than I already am protected from these sources of harm, but rather to work with others so that we get at the harm at its source so that everyone can be protected.

[00:14:26] Aaron Goodman: And so on a practical level, it means that, you know, you're speaking from an office. I'm guessing you may have air filters at home. You may live in an area that's further away from the source of toxic chemical pollution and have the opportunity to do that, whereas a lot of people don't have that opportunity.

[00:14:43] Noah T: Yes, absolutely. So if you look at the distribution of air pollution in Pittsburgh, it tends to be concentrated along lines of race and class, especially the communities, the frontline communities living right near the biggest sources of industrial pollution here tend to be marginalized along multiple different axes of race and class and oftentimes even gender as well. And then you think about not just where I live, but like you said, where I work and certainly the kinds of workplace protections that are in place at a university are going to go beyond what would be the case for many working-class people out in these exposed communities.

[00:15:28] Aaron Goodman: You talk about sacrifice zones in your paper, Noah, and you write, these are originally described bounded spaces, such as nuclear waste sites that are intentionally made uninhabitable in the name of national defense, development or the like, and you add polluters and policymakers knowingly burden marginalized populations with environmental harm. Do you want to talk about maybe one or two examples of communities who are living in sacrifice zones and what their experiences are?

[00:16:03] Noah T: Sure, so the concept of sacrifice zone I think helps us think about the fact that there are communities or spaces in the world that are deemed disposable. So one devastating example of this in the history of the United States comes from the extraction of uranium on Navajo or Diné lands in the Four Corners area of the U.S. Southwest. Tracy Lynn Voyles, among others, has written very powerfully about this and how this was explicitly a determination made by the U.S. settler colonial state and capitalist interests within it that this area, because it was quote-unquote empty except for Indians, was disposable in the interest of national security and energy. You can see the continuing consequences of that in that part of the country today. Other areas that I think are treated like sacrifice zones in quite different ways, we already mentioned Flint.

If you think about many marginalized urban contexts, particularly those inhabited by Black and other racialized communities in the United States, the amount of exclusion historically that those communities have faced from access to mortgages and affordable housing and food and green space and the other side of that coin, the disproportionate exposure that they've had to environmental harms, whether that's lead in the water pipes or the paint of their housing or pollution coming through the air, those communities are often treated as sacrifice zones, even if it's not discussed in as explicit a manner as it had been historically say in the case of the uranium mining in the U.S. Southwest. So I think sacrifice zones are all around us, unfortunately.

[00:17:56] Aaron Goodman: You write about how toxics are often weaponized and you talk about how U.S.-led chemical warfare in Southeast Asia and South America led to the mass marketing and distribution and selling of household products and personal care products. So there's a connection there, isn't there?

[00:18:18] Noah T: Absolutely. Yeah. A lot of the toxic chemicals that we interact with in our day-to-day lives were originally developed as chemical weapons by the military and the military-industrial complex, and what has happened historically is that something developed for that purpose would be used, then that conflict would end, and they would need a domestic peacetime market for it, so they'd rebrand it as a consumer product for killing insects, and create a need and a demand for it.

Paul Robbins' work on the history of lawns, right? This idea of a homogenous green lawn that everyone should have in U.S. history. There's a powerful connection to the chemical industry in that history as a way of finding markets for synthetic fertilizers and pesticides, both of which are required if you want to have that perfect green homogenous lawn. Ed Russell has written about this also in his book, War and Nature, about the development of chemical weapons, feeding into the increasing use of them, and the sort of spiraling, vicious cycle that develops once you start using them for agricultural applications. And I think you could find many more examples of this, but yes, there is a direct relationship between the explicit weaponization and development of chemical weapons and the expansion of consumer markets for different kinds of toxic chemicals.

[00:19:41] Aaron Goodman: Most of the people who are listening have Multiple Chemical Sensitivity, and I'm guessing people may be interested in pushing back. You talk about the advantages of coalition building. Do you think people with MCS can do this on our own?

[00:19:58] Noah T: So I think that people facing Multiple Chemical Sensitivity, their day-to-day survival is being threatened. And in that sense, they have a lot in common with other communities whose day-to-day survival and ability to thrive is being undermined and threatened in different ways. And so I would say there's that common threat, but then there's also the need for an analysis that can enable people to see those connections and to act on them in meaningful ways that don't reinforce preexisting inequalities. And I think this is part of what you were suggesting earlier, Aaron, when you brought up your own privileges that exist despite the challenges that you're dealing with. And similarly, in my case, so I think that it's one thing to recognize those common threats to social reproduction or survival, but then also to be able to analyze how they don't affect everyone the same and to position oneself within those differences so that one can act accountably.

[00:20:54] Aaron Goodman: When we talk about communities impacted by toxic chemical pollution pushing back, rising up. You write about the power structures that we inevitably come up against, right? It's not an easy fight or it's not going to be an easy fight, would you say? And are there any cases that you can point to?

[00:21:16] Noah T: We have many examples of people coming together and organizing in different ways, not always in ways that look like a social movement in the United States, but regardless, people organizing, coming together to challenge their disproportionate exposure to harm.

Part of what makes that happen, even if it isn't always successful, is people's ability both to, I think, recognize the threat that they're facing, but also their ability to develop a theory of change for how they're going to come together and address that. And this is why I think the work of organizing, the work of organizers out in communities is so very important because you can't socially engineer a movement, but people have to learn how to come together and take action in many cases, especially if that's not already part of existing sort of community histories and infrastructures.

[00:22:09] Aaron Goodman: It's often said that we need to start creating the change in our own lives first, but you also write about the challenges of doing that in capitalist culture.

[00:22:20] Noah T: So I think part of the problem of facing issues like this, or part of the challenge in a capitalist society, is that the default proposition, particularly for privileged individuals or communities, is to try to consume your way out of the problem.

In some ways, doubling down on the very thing that's causing the problem in the first place. It's no wonder though, because consumption is typically thought of as an apolitical activity or it's political insofar as you're creating incentives for change, but it's seen as a safer form of politics than more oppositional forms of organizing and resistance. And I think that the fact that consumption is the default so often should be a red flag, that it doesn't actually create any kind of major threat to the powerful interests that benefit from the status quo. So much of the discourse around toxicity in our country is about how do you purify your life from these toxics, whether that's by consuming organic foods, whether that's by buying non-toxic, whatever, all-natural products, not using substances that give off VOCs in your home on and on. It's not that those are bad things to do. I certainly try when I can to buy organic food and things like this, to limit myself and my family's exposure to toxics. The problem is though, not only are you chasing something that at this point is impossible, this idea of like purity from chemicals, you're also reducing this complex system that creates these toxins, patterns of exposure down to these individual transactions and sort of leaning into your own privilege, your ability to protect yourself selectively from some of them without taking actions that have larger impacts on society. And so I would say that although it can, it is necessary for some people to take extraordinary measures to protect themselves from chemicals and it's advisable for many others to do that as well.

To the extent that that comes at the expense of more basic civil rights organizing coalition building, that is a really unfortunate trade-off. So I would say it has to be a both-and if you want to take actions as a consumer or you must take actions as a consumer in your everyday life, then yeah, great. But that hopefully wouldn't prevent you then from becoming part of a larger movement that may or may not be exclusively about toxics, but that has a larger mission of challenging inequality.

[00:24:56] Aaron Goodman: You write about the challenge that we face in capitalist culture, even if we try to avoid toxic products. And there's a really interesting, disturbing example that I've been thinking about lately. Oftentimes people with chemical intolerance, Multiple Chemical Sensitivity, rely on masks that filter out toxic chemicals. And yet some of the companies that make these masks are well known to produce toxics that harm the environment and human health. I wonder how you see that.

[00:25:25] Noah T: Yeah, that's, I think that relates to the previous point that I was making about how using consumption as our primary tool for trying to address the problem of toxic exposure in some ways is amplifying the very problem that we are trying to address. And I think it's no surprise that the same companies that produce toxics are also producing devices or other kinds of commodities for protecting ourselves from those things.

I think it makes a lot of sense, actually, when you think about the economic incentives involved. I'm not sure exactly what the takeaway is from that, because I think people who are using, say, like a really powerful ventilator or filter in their day-to-day lives are doing it because they really need to, and there isn't really an alternative.

However, I would say that this points to the need for better regulation, better use of our public policy tools to put some kind of accountability mechanisms in place for the release of those toxics into society in the first place.

[00:26:36] Aaron Goodman: In your paper you talk about citizen science and communities impacted by toxins, measuring the harms that are done to their bodies. It's a really powerful way of communities rising up. Do you want to talk a little bit about that? And is that really what's required of us to measure or take our blood and measure the toxins in our bodies? Are we even equipped to do that? I wouldn't know where to start, really.

[00:27:03] Noah T: Yeah, it's a tricky thing because on the one hand, I think that there has been this long-standing, but I think increasingly sort of vibrant space of communities trying to gain access to and using themselves tools with which they can detect the presence of toxics in their environment or the presence of toxics in their own bodies and use that to try to bolster their arguments or their demands for restitution and protection.

On the other hand, romanticizing that, romanticizing the ideas that ordinary people themselves should be responsible for making these measurements and doing all of this work feeds into what sometimes is called like a neoliberal framework for society, right? Where the state is withered down to its very minimalist possible form. And everything is handled as much as possible by private interests and individual actors. The fact that in the United States, non-governmental organizations, nonprofits, advocacy groups and others take on such a burden of responsibility for tracking problems in society and trying to address those problems I think speaks to hollowing out of our public infrastructure, the state, the government that is supposed to do this job.

And so, although I think it can be very powerful for citizens to become directly involved in the work of monitoring, measuring, advocating, it should not come at the expense of building those capacities in the state and using the state to hold the polluters accountable.

[00:28:40] Aaron Goodman: People like yourself who've spent years, decades, studying these issues with impacted communities. What do you think the future of collaborative research could look like with people impacted by toxins, and particularly people who have Multiple Chemical Sensitivity, chemical intolerance, toxicant-induced loss of tolerance, or TILT?

[00:29:04] Noah T: So for me, this really is and must be the future of research on toxics. For one thing, there's the problem that research on toxics can be pathologizing. It can lead to a further stigmatization of already marginalized, stigmatized communities. And so the kind of in-and-out research where you're just there to document toxic harm, and that's the extent of your engagement with the community as a researcher, I think that's very limiting and isn't really the direction that I see a lot of this work headed in, precisely because of the additional harm that it can do, and also because if those, the findings of that research aren't actually changing anything, what is the purpose of it?

Why would communities even consent to be involved in research, gathers data from them, further pathologizes them, and then doesn't change anything? And so I think the model of research in this space that I advocate for that I think is becoming increasingly common is to have communities themselves, if not directly lead the research, certainly have a powerful voice in shaping the research design, the research questions, the research methods, and also how that research is communicated and disseminated so that it doesn't, on the one hand, simply come in, document a bunch of things, and then leave with no follow-up or accountability.

But also so that what it actually documents goes beyond simply documenting harm, documenting also, or enhancing capacities to address that harm, to achieve other kinds of. My colleague here at Carnegie Mellon, Neda Rehman, has done a lot of really impactful and interesting research with an organization called North Braddock Residents for Our Future, a community that is heavily exposed to toxics, particularly, but not exclusively in the air from the steel industry.

Their work, while definitely attending to those harms is really focused on bringing people together and using the skills of collaborative urban design to envision alternative futures for that community and other communities in the region. And where I see this field growing in ways that both address toxic harm as a reality. Go beyond that and think about how communities themselves can find a voice in these conversations beyond just being the repositories of harm.

[00:31:30] Aaron Goodman: Thank you very much, Noah, for taking time and sharing your insights and knowledge with me and listeners. Thank you so much.

[00:31:38] Noah T: It was a great pleasure, Aaron. Thank you for having me.

[00:31:41] Aaron Goodman: You've been listening to the Chemical Sensitivity Podcast. I'm the host and podcast creator, Aaron Goodman. The Chemical Sensitivity Podcast is by and for the MCS community. The podcast is generously supported by the Marilyn Brockman Hoffman Foundation and listeners like you. If you wish to support the podcast, please visit ChemicalSensitivityPodcast.org. Your support will help us continue making the podcast available and creating greater awareness about MCS. To keep up with the Chemical Sensitivity Podcast and learn more, please follow the podcast on YouTube, on Facebook, YouTube, Instagram, X, and TikTok. Thanks for listening. The Chemical Sensitivity Podcast and its associated website are the work of Aaron Goodman and made possible with funds from the Marilyn Brockman Hoffman Foundation, supporting efforts to educate and inform physicians, scientists, and the public about Multiple Chemical Sensitivity.

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