[00:00:00] Aaron Goodman: You are listening to the Chemical Sensitivity Podcast. I'm Aaron Goodman. We recently moved; my son's friend and his mom, their family friends, dropped by. I'd had a rough sleep; I'd breathed dryer sheets, one of my biggest kryptonites. The night before I made muffins. We cleaned the house and the guests came, but I was down.

My mind wasn't functioning. I was fatigued. I took some time with our guests in the living room to take care of myself. And a bit later I felt all right. Not completely, but just enough. I was back to making jokes, enjoying our visit, but there have been so many times when I didn't give myself that kind of permission to take care of myself.

I spent over 10 years teaching at university in the classroom, feeling ill most of the time, reacting to fragrance. I told myself I had to act like I was okay. I was scraping by; sometimes I struggled for words. I stuttered. I couldn't engage with students and colleagues in the way I wanted to. It took me a long time to begin asking students to not use fragrance in the class.

I recall a couple of times when students came into the room smelling really fragrant, causing me an instant reaction. I asked them why they were ignoring my request. Did they forget? I was starting to look out for myself in a tough situation. One time I was riding transit with a colleague. I hadn't fully come out to my workmates about the extent of my MCS.

We were on a commuter train. Of course there was fragrance in the air and I tried to make out as if I was okay. I felt shame to tell my colleague that I was ill. Where does this come from? The feeling that I need to present myself in a certain way. I think about what people will think of me. I doubt I'd feel that way if I had diabetes or broken leg, maybe a cracked tooth or sprained ankle.

But MCS is so misunderstood. This past week alone, I stumbled on two papers falsely repeating the claim that people with MCS are overreacting, dreading that something terrible will happen from exposure to fragrance or chemicals, and it's the dread. The fear these authors say that's the problem, not the physiological illness we have.

It's easy to make an argument like this. So many scholars have done it. I know a little bit about how research works and my sense is folks who do this have a conclusion in mind at the outset, and they seek sources—other papers—to back their case, but they neglect a whole lot of research. One of these papers I found looked only at sources written 20 years ago.

MCS research isn't widely funded. I've looked into it and there may be less than 200 researchers around the world actively looking at MCS today. That in itself feels like an inflated number, maybe more like a dozen or two. And when it comes to illnesses like cancer, Alzheimer's, and diabetes, for example, there are untold numbers of scholars dedicated to advancing knowledge about these illnesses and exploring new treatments. People with MCS not only have to deal with chronic, often debilitating symptoms—different parts of our bodies are affected. I get brain fog, difficulty concentrating, sometimes communicating clearly. My brain literally feels swollen inside my skull.

I get thirsty, my eyes get irritated, and my mood drops. My tongue swells. Others get migraines and rashes. Some feel agitated and anxious, and there are many other symptoms. I spoke with Daniel Slavia on the podcast a while back. He's a young man who identifies as a universal reactor and has spent years living in his vehicle because he can't tolerate most indoor environments.

I remember Daniel saying something like, sometimes I even have a hard time believing this is happening to me. I get it. How could I feel healthy, clearheaded, and content walking my dog in one moment and in the next, after breathing in neighbors’ scented laundry products flowing from their dryer vent, filling the air on the block, quickly beginning a descent into what I can only describe as terrible, knowing it will last 24 hours or longer.

When I was a kid, I didn't know enough about MCS and my triggers to tell people. In my family of origin, I was suffering. I didn't know the cleaning products my parents used in our home made me ill. I recently saw someone post online that when they were young, their mother paid close attention and learned
they had MCS—what a gift. I didn't have that, and many of us didn't get that kind of attention and awareness, and many of us have been dismissed; we're told it can't be that bad. How can a small amount of chemicals make such an impact? And we understand by people's expressions and silences, like some of the researchers putting out false arguments, that they likely suspect we're experiencing mental health issues.

That's why I don't say anything. That's why I didn't say anything to my colleague on the train, why I didn't bring it up with my students and peers. For years, my parents didn't pick up on it. They may not have been looking. I no longer turn away from my own illness. I surround myself with people who, although they may not fully understand MCS, they grant me the benefit of the doubt.

They ask questions about it; they're curious. They offer compassion. Like my friend Adrian—he runs at the nearby track and does exercise on the bars in the mornings; the air's fresh and it's a good workout. I try joining as much as I can. But when my sleep's compromised from a reaction, I text him. “Sorry to hear it.”
He writes back. What a guy, what a friend. And the next time, if I'm down from a reaction, I'll let him know again. 

You're listening to the Chemical Sensitivity Podcast. I'm Aaron Goodman. I'm a journalist, documentary maker, and researcher, and I'm also someone who's lived with Multiple Chemical Sensitivity or MCS for years.
MCS, also called chemical intolerance, Toxicant-Induced Loss of Tolerance, or TILT, and idiopathic environmental illness, affects millions around the world. It's a condition that makes everyday life extremely challenging and unpredictable. Fragrance, air fresheners, fresh paint, scented laundry products on someone's clothing, and a lot more trigger exhaustion, brain fog, muscle pain, rashes, and a wide range of symptoms. And yet, for all its impacts, MCS remains largely invisible. Doctors dismiss it. Employers rarely accommodate it. Even friends and family struggle to understand. This podcast aims to change that. We dive into the latest research, share real stories, and explore how people navigate life with an illness many refuse to see. 

In this episode, I'm speaking with Nicholas Shapiro, PhD. Nicholas is an environmental anthropologist and associate professor at the University of California, Los Angeles. I invited Nicholas to speak with me about his 2025 book “Homesick.” It's a disturbing, compelling exploration of the U.S. government's response to Hurricane Katrina, which devastated the country's Gulf Coast on August 29th, 2005. The disaster displaced tens of thousands of people
across the states of Louisiana, Mississippi, and Alabama. The Federal Emergency Management Agency, or FEMA, provided over 120,000 trailers and mobile homes for affected communities for but instead of giving folks safe shelter, tens of thousands of people were exposed to dangerous levels of formaldehyde. You'll hear Nicholas explore how families and children developed troubling health conditions, including chronic coughs, rashes, asthma, headaches, nosebleeds, and more. And while people didn't specifically report having Multiple Chemical Sensitivity, formaldehyde is a known trigger for people with illness, and it could be that people simply didn't know about MCS.

This isn't a story just about Hurricane Katrina and its aftermath because thousands of those trailers were resold and made their way far from the disaster zone, impacting untold numbers of others. 

Professor Shapiro, thank you so much for joining me. It's really an honor to talk with you. 

Nicholas Shapiro: So glad to be here.

Aaron Goodman: Yeah. For folks who aren't familiar with your work and your book, “Homesick,” which is a phenomenal book, so interesting—I think it'll be really interesting for folks with Multiple Chemical Sensitivity—do you want to talk a little bit about where you're coming from, who you are, and why you accepted this invitation to talk on this podcast?

[00:09:32] Nicholas Shapiro: Sure. I can start with
what the book is. So there's—the book is called “Homesick,” and it's really a book about how the contemporary North American home has become a seat of chemical exposure and then what can we do about it. So it really tries to put to the test the different dominant theories that we have about how to create change from these sort of inbuilt structural exposures.
Those big questions are rooted in FIC exposure within the FEMA trailers, which were these emergency housing units—150,000 of them—given out after Hurricane Katrina and then quasi-legally resold across the continent. And these trailers that were meant to be life-saving interventions into a post-disaster landscape ended up being the largest formaldehyde exposure in our species’ history.
And so through looking at formaldehyde and the FEMA trailers, we get to understand this really concentrated, highly publicized, domestic chemical exposure that then is an inroad into the less publicized, everyday, common, not-publicized kinds of exposure that I think your listeners are probably all too familiar with.

Aaron Goodman: Before you go on, FEMA—for folks who aren't familiar.

Nicholas Shapiro: Sure. Absolutely. So FEMA is the Federal Emergency Management Agency, and it's the federal agency in the United States that is—and maybe not for long—charged with disaster response. So from wildfires to floods to hurricanes. Yeah. So do

[00:11:13] Aaron Goodman: you want to take us back to that moment for—just to remind us or folks who are super familiar—what happened?
Where was it? How many people were affected roughly? And what was the response?

[00:11:25] Nicholas Shapiro: Yeah, absolutely. So there's a bit of this—this paradox is gonna echo again and again throughout our discussion today—of engineered systems designed to protect causing exposure. So that's also the story of Hurricane Katrina, where the levee system and a manmade shipping channel, which were supposed to protect human civilization and commerce, really magnified this storm surge from Hurricane Katrina. 'Cause Hurricane Katrina really missed New Orleans. It swung to the east and missed the city. But there's this giant, uh, storm swell—storm surge—careened down this concentrated shipping channel into the levee system, compromising it in over 50 places and resulting in the inundation of a major American city. In the disaster situation, usually for housing, the first course of action is to get people into actual housing meant for long and medium-term habitation—so like Section 8 housing, trying to get—use government vouchers to get people into the rental market—and people are just gonna be happier when you have more space. But that wasn't possible with the decimation of that scale. And so, uh, 150,000 trailers of different varieties—some were camper trailers. They're really not designed for anything longer than two weeks. But those were installed into people's houses, jacked up on cinder blocks. People lived in them for years, and some of the trailers were mobile homes. At the beginning, people were looking for a way to reinstate the spatial syntax of the city.
That's a complicated way of saying when your walls are destroyed, your laws are destroyed, your civilization is destroyed, and the walls of a home are the basics of rebuilding a society. So people wanted their homes; they wanted homes that they could get, and those were trailers. So they were pulled in on trucks and sent in on railways and, um,

[00:13:23] Aaron Goodman: 150,000 trailers into the city.
Mm-hmm.

[00:13:26] Nicholas Shapiro: Yeah. And, and more than one person living in each trailer. So it's at least 300,000 people living in this. No other time has so many people moved into basically the same.

[00:13:37] Aaron Goodman: And mostly are we talking about people of color, Black, racialized people in this particular—who were given these homes?

[00:13:45] Nicholas Shapiro: This—it's a good question.
And so I guess in Louisiana mostly, yes, it was more Black people than white people. In Mississippi, it was more white people than Black people. In Mississippi, sometimes the richer areas were flooded because they were along the coastline. And in Louisiana it was often the lower-income neighborhoods of color that were flooded.
Yeah. And so there—there are two different ways that they're often given to people. Yeah. If you had enough—if you had—if you're a homeowner or a renter with enough space, you would get the trailer put in your front yard. But in many of—in the urban New Orleans neighborhoods of color, they're row homes, basically shotgun homes, and there's no space for a trailer often. So many people were also pushed onto these trailer parks that were away from where they lived. And so sometimes you'd be up in Baton Rouge, but you lived in New Orleans. And this is also true of people that were living in public housing. And yeah, these—these campsites were—or these trailer parks were really, I think it was summarized by an urban planner as really the signature of everything that could go wrong in disaster response.
You had no access to food out there. You were very secluded. You couldn't get access to social services. There were no jobs. Unemployment was probably like the more fiscally responsible opportunity; rather than—you’re pulled out of your social circle, so you don't have family to do childcare. So walking down the highway for a couple hours to get to your job without childcare is actually irresponsible.
And so being unemployed is actually the most financially responsible way to navigate those situations. They were pretty bleak. And then on top of that, people were collectively coming to the understanding that the air in these homes was toxic. And so there was this way that the chemical exposure of these trailers would collectively choreograph days. Formaldehyde—its off-gassing is temperature- and humidity-dependent. So as the temperature rises during the day, the off-gassing also rises. And so everyone would just, during the hottest parts of the day, just couldn't be in their trailers.

[00:15:57] Aaron Goodman: So I take it that formaldehyde is a major source of chemical exposure in these trailers.
How did people start to notice? Did they smell it? Did they start to feel ill? What were they reporting at the start and what

[00:16:09] Nicholas Shapiro: did they do? It's a great question, and in order to get into what did they do and how did they perceive it, I will just also answer your first question about what it is. Formaldehyde is the major issue, and yes, formaldehyde is the most common domestic toxicant. Next to that, I would also place mold. These two issues go together in RVs—in RVs and in other homes too. So homes in general, but in this context particularly. And mold too. And mold and formaldehyde have some environmental reasons for them to occur together. Like I said earlier, with humidity and temperature, off-gassing increases. Water intrusion happens; there's gonna be more off-gassing of formaldehyde. You've probably seen like a bit of engineered wood left out in the rain and how it—like it delaminates and expands a bit, and that's the glue basically of the formaldehyde resin releasing.

[00:17:06] Aaron Goodman: Yeah. And I feel nauseous just thinking about it, right? Yeah. 'Cause we know the symptoms that come with it, the smells, the way it makes us feel. Right? So I can only imagine 150,000 plus people living on—in this condition, these conditions, on a daily basis, having to go outside of the homes to escape it. Pretty serious stuff, right? It didn't take long for this to start happening. I bet

[00:17:29] Nicholas Shapiro: it didn't take long for people to understand that there was an issue, and it did take a long time for the government to deal with the issue. But I guess just to finish—crossover between formaldehyde exposure and mold so that the water that really makes mold thrive is also the intruding element that makes formaldehyde also off-gas more. So there have been scientific studies in FEMA trailers that when there's over a certain amount of visible mold in the trailer, there's also more formaldehyde. So these two exposures—one is biological and the other is chemical—they're working together.

[00:18:09] Aaron Goodman: What was your entry point? Right. You mentioned that the disaster happened 20 years ago. Where were you at the time and at what point did you begin your field work as an

[00:18:18] Nicholas Shapiro: anthropologist, I happened to be in New Orleans helping friends from Texas drive their cars to college for our sophomore year of college, and I was in New Orleans as the hurricane hit.
I knew that I had to return. We exited over these roads called the Twin Spans that—that go over that manmade shipping channel where the surge—the storm surge I mentioned—occurred. Those bridges that we left in a pretty intense storm were soon thereafter destroyed by the storm surge. So I—I think for personal reasons, I knew I wanted to go back to New Orleans, and I had friends working in the reconstruction, and one of my friends after a number of years left construction and started working as a—a law clerk at a law firm that happened to be looking into the FEMA formaldehyde issue, and I'd heard of it in the news, and I first got acquainted with the issue more intensely through the tracking what was happening in the courtroom surrounding upwards of 90,000 people banding together to make this large collective litigation about their chemical injuries.

[00:19:26] Aaron Goodman: So how many years after the disaster did you begin this field work?

[00:19:30] Nicholas Shapiro: So I began the field work in 2009, so about four years after. And in 2010, the federal government decided to start selling the toxic trailers all across the world. As I started the work, I then had to go on multiple years of road trips, just finding the trailers as they were going to
fracking boom towns in North Dakota, the high desert here outside of LA, many in Canada, some shipped to Central America. And yeah, so I spent years just tracking them down, and I teamed up with an analytical chemistry lab to offer free formaldehyde testing. So people would get in touch with me. I would come test their home and talk to 'em about their experiences.
So my methods are always qualitative and quantitative—analytical chemistry, trying to understand people's lived experience and also trying to assess really
what their exposures are.

[00:20:30] Aaron Goodman: Yeah. And what we know about anthropology is that there's a lot of work in community, right? And working closely with people at an equal level. Are there a couple of people who have made an impression on you, a lasting impression—people who may have developed Multiple Chemical Sensitivity as a result of exposure? What were their lives like at that time, and how have they done since?

[00:20:52] Nicholas Shapiro: I think one story that comes to mind
for this audience in particular—and this is part of the story where it's not just the FEMA trailers, but it's just homes in general. There was a woman who was in—who lived in a modular home in Nebraska who contacted me, and you know, I think that she experienced the surreal warping of life that you and your listeners know all too well, where your experience of time and mundane objects is just so different than
people that don't have that same kind of sensitivity.
So she had many symptoms like chronic diarrhea, fatigue, dermatological issues, constant sinus infection, the brain fog. And the list goes on. I think nightmares is actually one of the more interesting symptoms that was pretty prevalent among people at the time of the disaster—having nightmares. Uh, not just at the time of the disaster—this is all people with chemical exposures in their homes all over the country and all over the world contacting me. And this is something—
I remember someone living in a resold FEMA trailer in Florida, and he had it in his grandparents' backyard, and he would have a nightmare when he slept 10 feet away from his grandparents' house in the trailer, and he'd spend one night back in the home and he wouldn't have a nightmare.

[00:22:16] Aaron Goodman: What do you
make of that, Nicholas? What do you think is going on?

[00:22:19] Nicholas Shapiro: I don't pretend to know, but there's clearly cascades of chemical reactions that happen when you have these kinds of exposure. This is something that all kinds of people were experiencing. And there's this one industrial hygienist named Linda Kincaid.
She would go and she would test the formaldehyde levels in high-end Silicon Valley homes during open houses. So she was going into these California homes—these mansions basically, or McMansions—and they were all being touted for their energy efficiency. And obviously there's a learning curve in the energy efficiency domestic market where initially a lot of these energy-efficient homes were just bottling up the chemical brew more intensely.
And so she would go and test these homes discreetly with an expensive formaldehyde meter in her purse with the tube sticking out. And this is an industrial hygienist that would also feel these nightmares, and she would sequence the onset of her symptoms—specifically nightmares—down to 10 parts per billion.
And so I think this is something that the listening community for this podcast will know well, is that the body is just such an uncannily powerful instrument for determining the chemical payload of atmospheres. And Linda was in a privileged position because she had multiple formaldehyde meters on her.
She could sequence with high precision her symptoms to her exposures. And anyway, so there's lots of stories, and I think one story I want to get to is this story of this woman living in a modular home in Nebraska who's trying to make sense of what was going on. She's trying to figure out where the chemicals were coming from that were making her
ill. She had tested for black mold. She tested the water. She tested the outdoor air. She tested for asbestos. That wasn't an issue. You know, she—she went through all of the motions. And so she actually invited someone that she had met who had MCS to come over and basically see what was affecting her. So this was a—a moment of like extreme collaboration with someone that had MCS who was willing to lend their bodily vulnerability to help decipher where the emissions were coming from. And when the woman laid her hands on the engineered wood cabinetry, she fell to the ground and collapsed. 

[00:24:39] Aaron Goodman: the—so this is a trailer that was originally provided by the U.S. government—no disaster. It's just a different kind of—it's just a modular trailer in a different context.

[00:24:49] Nicholas Shapiro: Just a modular home. Yeah. People—people in all kinds of homes I've tested, or I've been invited into—you know, mansions that are green, homes that need to have the door open at all times in order to have the ventilation actually make it healthy. And then I spend time in 250-square-foot trailers. So it's really the entire spectrum of the housing market.

Aaron Goodman: I see. 

Nicholas Shapiro: And there's a recent study put out right at the end of the Biden administration. There's two studies, and between them—one by HUD (Housing and Urban Development) and one by EPA (Environmental Protection Agency)—and between the two of them, you can understand that the average American house has enough formaldehyde to have negative respiratory impacts.
So this is like every home across the entire country. There are clearly continent-wide issues here.

[00:25:33] Aaron Goodman: Absolutely, absolutely. And for people with MCS, housing is often the number one challenge. The thing that's interesting and sad, if that's the right word, about your work is that a lot of people with MCS need to find alternative options. And often we resort to finding the safest RV—recreational vehicle—or any vehicle to live in and to take those out of cities. But knowing what you know about recreational vehicles—it's a trap, isn't it? It's—it can be very complicated.

[00:26:06] Nicholas Shapiro: It's—can be very complicated. Absolutely. So RVs, mobile homes, modular homes, manufactured homes—however you wanna refer to that general housing market in the U.S.—they're absolutely the number one unsubsidized form of low-income housing.
So they serve a dramatic need and unfortunately, part of their low cost is subsidized by the health impacts. You've got an increased amount of engineered woods. You've got reduced ventilation. And you have a small interior space for the off-gassing to dilute. And so those three factors combined can make the formaldehyde levels in RVs, modular homes, manufactured homes
pretty high. So ventilation with a heat exchanger is a really great way to—if you're in a place with good, clean outdoor air—that's a great way to energy efficiently ventilate and keep your indoor air clean.

[00:27:12] Aaron Goodman: You mentioned a lot of people with MCS get in touch with you.

[00:27:33] Nicholas Shapiro: Oh, absolutely.

[00:27:33] Aaron Goodman: They get in touch with you because of the knowledge that you have based on your work around Katrina, right? 150,000 contaminated mobile homes—and your ongoing work. What kind of questions do people have for you and what do you say to folks?

[00:27:33] Nicholas Shapiro: I think some of the hardest questions that I get revolve around testing. I have helped people—I'm sort of run out of funding for doing that right now—but I have been helping people get testing for their home to see what their exposures are, and I get hit with some questions that
the answers are not that simple. The questions are like, at what level do I rip the floors out? Though you might remember a few years ago, there was the Lumber Liquidators formaldehyde flooring issue where there's this massive flooring retailer in the United States that was basically lying to regulators that their floorboards—their engineered wood floorboards—met regulatory levels, and they didn't.
And as a result, they were getting a huge amount of profit. People with Lumber Liquidators flooring would—would say, test my home, and at what level do I rip the floors out? And it's just not that easy because people have different sensitivities. I don't know what their financial constraints are. The math is really complicated. It's not a one-size-fits-all model.
I think those are hours-long conversations. They are. I think those are the most heart-wrenching questions where we think that science is gonna pull a number out that's gonna make everything clear, but we really have to have a bespoke plan for each individual household.

[00:28:50] Aaron Goodman: In—in the last couple of minutes that we have together, Nicholas, is there anything you'd like to say to folks with MCS who may be in precarious housing?

[00:29:02] Nicholas Shapiro: I'm not sure. I think I—I would also like to hear from you and them about how this work can be useful. I think the thing that I
hope for—and I had worked for it for a little while, and then some funding got cut,
I really want an authoritative way of validating lived experience of chemical exposure. So epidemiological studies show that individuals are better at determining changes to their own health than a doctor, and that is one of the fundamental truths of having a chemical sensitivity—is being able to understand how a sequence of exposure and biological response is happening in our intimate encounters with chemicals. And so this is a site of tremendous knowledge production, and the medical establishment needs to create tools and processes for validating those experiences so that we can act on them to steward people's health. I think that's the thing that I want to work towards and want to see to fruition—is ways of aggregating those minute, intense moments of knowledge being produced through harm—to help authorities understand the reality of these problems.

[00:30:22] Aaron Goodman: You've said it so incredibly. There is a lot of knowledge that we each have. Nicholas, thank you so much. The book is phenomenal. Your work is super important, and thanks so much for taking time to talk with us. 

You've been listening to the Chemical Sensitivity Podcast. I'm the host and podcast creator, Aaron Goodman. And by the way, I'm planning a special episode of the Chemical Sensitivity Podcast focused on listeners’ questions.
Send in your questions about MCS and I’ll endeavor to get answers from experts and people with MCS and share these on the podcast. You can find the podcast’s new Facebook group online; just search for the Chemical Sensitivity
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Thanks for listening. 

The Chemical Sensitivity Podcast and associated website are the work of Aaron Goodman, made possible with funds from the Marilyn Brachman Hoffman Foundation, supporting efforts to educate and inform physicians, scientists, and the public about Multiple Chemical Sensitivity. Content, opinions, findings, statements, and recommendations expressed in this Chemical Sensitivity Podcast and associated website do not necessarily reflect the views and opinions of its sponsors.