Aaron Goodman: Welcome to the Chemical Sensitivity Podcast. I'm Aaron Goodman, host and creator of the show. I'm a longtime 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 and toxicant intolerance, 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 can spark a cascade of debilitating symptoms. Finding accommodations can be very complicated. Dismissed by health care 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 Liza Grandia. Liza is an associate professor at the University of California Davis in the department of Native American Studies. She's an anthropologist whose research has involved living with Indigenous people in Guatemala and Belize, where she focused on the impacts of pesticides and toxins in everyday life.
We talk about Liza's experiences as someone with MCS, who has worked hard to create awareness about the illness and what it has taken to be out about it. We also talk about the lack of adequate regulations for toxic chemicals and how people impacted by toxins must be involved in science and research about the harms they cause.
[00:02:28] Aaron Goodman: Hi, Liza. Thanks so much for joining me on the podcast.
[00:02:32] Liza G.: It's great to be here.
[00:02:33] Aaron Goodman: I really appreciate it. You write, “I am thrice a canary in the coal mine.” Do you want to talk a little bit about what you mean by that?
[00:02:44] Liza G.: We know that the synthetic chemicals of the 20th century are affecting everybody, right? Cancer rates are rising. And many other strange illnesses that are difficult to diagnose and the general malaise, right? But those of us with chemical sensitivity, suffered those symptoms more acutely. So we're a warning to others. It's a metaphor that we've used I think, trying to give some validation to our suffering. I don't remember exactly when I first heard that metaphor. But I remember feeling profound relief of the idea that the suffering, that I could use this suffering, of smelling things that other people don't to, to warn folks.
I was diagnosed with Non-Hodgkin's lymphoma on the eve of my 35th birthday and Non-Hodgkin's lymphoma is one of those cancers that has no genetic predisposition, but it very well correlated with pesticide exposure and other environmental and occupational health exposures. From that experience of going through chemotherapy and working in a sick building, I began to become sensitized to chemicals that other people may not notice, right?
I became a canary, and it was in those years that I began to embrace that idea. Chemical sensitivity causes aphasia, difficulty in recalling words that for me, as an academic, I was ashamed to talk about the cognitive effects of chemicals on my brain. But I reached a point where I couldn't continue giving lectures, I couldn't keep coping with the heavy amounts of perfume and cologne that students wear to class. And so I began to come out of the closet and as students came to me in my office hours, with their own stories of suffering and silence, I began to realize that I needed to come out of the chemical closet, so to speak.
And it was at a conference down at UCLA organized by Rachel Lee, who I think has been on your show that I began to speak publicly about carpet, about sick buildings, about chemical sensitivity and then unfortunately in the pandemic, I ended up getting COVID in the first wave and then never got better. So. I had to speak out about long COVID to try to help others avoid a similar fate, right? And also to alleviate those who are suffering from chemical sensitivity in various degrees, right?
[00:05:22] Aaron Goodman: I think it's taken a lot of courage for you to be out about the chemical intolerance, multiple chemical sensitivity that you experience.Do you want to talk a little bit about, your thinking and what it was like to actually take that step and be open and come out as you say, was there any stigma that you face? Any pushback? How did that go?
[00:05:48] Liza G.: Sure. I mean, I had many difficult years with a very, aggressive university administrator who was doing everything in his power to make my life miserable for speaking out.
This was a situation that went on for many years and almost had me giving up my tenure job. But it was the students who kept coming to my office with their own testimonies that made me realize that I had, I needed to speak out for those who couldn't.
I think sometimes I would make an announcement, you know, please, not to wear fragrance and cologne. Let's keep neurotoxins out of the classroom, but that doesn't always work. So, I ended up just being very vulnerable and showing students a picture of myself, bald, going through chemotherapy. And so that was a way that I could begin to get people thinking about the issue and thinking about, you know, here's my professor who's very young, also had cancer. Maybe there's something there and she's not just a wacky, curly haired anthropologist. So I began to be more vulnerable in my announcements and students responded.
I mean, from one week to another, like the amount of perfume just palpably went down in my lecture halls after I would make this announcement. So this kid came to me and he said, you know, Professor Grandia, I stopped wearing cologne on the days I came to campus for your lectures out of respect for you.And then I realized I could concentrate better. And so I stopped wearing it every day and so, you know, stories like that, that made me realize I needed for every generation of students to continue to be open.
[00:07:26] Aaron Goodman: Yeah, it's very interesting. And, I'm also an educator and I face the challenges about being open with colleagues and some pushback. And I find it really daunting to talk about these issues with students because of the pervasive presence of synthetic chemicals in the laundry fragrances and the body sprays. So, this is a really powerful positive anecdote and I really commend you for your courage to be open about it. Just wanted to ask you, do you happen to know any others who are open about their chemical intolerance, multiple chemical sensitivity in the workplace?
[00:08:07] Liza G.: Sure. They write me, because, you know, I published about this. I do think that for many who are working in offices, it's a very difficult situation because there's often, you know, a person that just refuses to understand.
I mean, in many ways, it's a, it's parallel to the smoking epidemic. Right? Now, 50 years ago, you had doctors endorsing cigarettes. I mean, it took a really long time and a lot of science and a lot of corporate denial. To recognize that smoking not only was causing cancer for, for smokers, but that secondhand and even thirdhand smoke could affect others.
So I, I think it's that, it's a very similar situation with fragrances, right? These fragrances are designed to, to waft long distances and to stick around, natural fragrances evaporate in the wind, right? But these synthetic fragrances are heavy and they're, they're actually put on plastic molecules called phthalates, right? They're aggressive, and designed to deaden the senses to replace it with the synthetic smell.
Claudia Miller writes about this, an MD who was a pioneer in indoor air quality. And, who's brilliant theory of toxic induced lack of tolerance TILT - because often we are described as being sensitive. Like the problem is on us, but anybody can have their system overloaded, right? They can by having too many toxicants, whether it's pesticides, whether it's synthetic fragrances, whether it's carpet.
I mean, there are lots of things that can overload a system. And then after that, you can become hyper-reactive because the mass cells have been activated into inflammatory responses. And then talking to some of my colleagues here at UC Davis. I was amazed at how many of them were also sensitive. They wouldn't perhaps have used the same language that we do - of MCS - of multiple chemical sensitivity.
[00:10:12] Aaron Goodman: Can you take us back to your anthropology research, which, if I understand correctly, you began in the early nineties, in northern Guatemala, and you lived with indigenous families. What led you to take on that work? And do you want to talk a little bit about what you saw in some of these communities when it comes to the impacts of toxic chemical pollution? You write about so many really compelling and disturbing examples of how chemical waste that is exported to the global south really showed up in those communities.
[00:10:52] Liza G.: I grew up in the Deep South. After I was born, I came home to a trailer park in Alabama. So when I went to Yale, I was a little bit of a fish out of water. I didn't, you know, they're very wealthy people at Yale. And I often got made fun of for my Southern accent, which is why I got rid of it.
And I was taking classes about international relations and globalization. And I just, I thought I really wanted to understand how women in developing countries can make it on a dollar a day and how they get by. And I was thinking about a career in international development. So I took a year off of Yale and I wrote to a lot of nonprofits in Latin America and one wrote back and I ended up in Guatemala.
The project that I was supposed to work on didn't exist. I think the project manager got it mixed up with Costa Rica. So, they're like, if you come, we need you to go out, live in a village as a volunteer and do teaching in the elementary school about environmental issues.
This was a village inside a newly created national park in Northern Guatemala. And I was like, great, that's what I want to do. I didn't know what anthropology was at the time, but I started meeting a lot of really interesting anthropologists in Guatemala and I remained associated with that nonprofit.
I began to see that the underlying causes of poverty were geopolitical. I wanted to kind of understand how to more systematically address those. So I decided to go to graduate school and I just met so many interesting anthropologists that I picked anthropology, but it ended up being a very good fit. So I continue to do field work in villages.
I'm an activist, anthropologist. I've stopped pipelines. I've stopped World Bank projects, but it's out of like very grounded research. Cause I understand, I witness the effects of these global projects right on people's everyday lives. And I love that work.
I grew up around Earth Day 1990, I was an environmentalist in high school and in college, so I knew some basic things about the hazards of pesticides. So I took notes. Those early years, like, I didn't think it would affect me, right?
You're young. You think you're invulnerable. But I did carefully take field notes. And so when I was diagnosed with cancer with what then I discovered was a cancer associated with pesticides, I could go back to my my notes and I knew exactly what I had been exposed to and I began researching those things and discovered that chemical corporations can export pesticides that have been banned in the United States and in the European Union.
This is not just a problem of the US but the European Union does this as well. They export highly hazardous pesticides to Third World countries, where farmers have even fewer safety protections than here, right? In the region I worked you couldn't find a mask, even if you wanted to look for one.
And in the tropics, wearing long sleeve rubber clothing, overalls, it's simply not practical. And, you know, for farmers living in the huts with a family of eight or 10 in one room, where do you store those pesticides? I think back in my field work, they got stored next to my bed, right?
There is no safe storage. So, you know, in releasing these chemicals, I mean, this is, this is murder. This is environmental racism, plain and simple. Briefly Jimmy Carter stopped this practice through presidential decree, but Ronald Reagan overturned it. And still today, chemical companies export what's been banned here.
[00:14:37] Aaron Goodman: You mentioned pesticide and you also write about some really disturbing examples. For example, children chewing on batteries as teething toys, bleach bottles used as water containers, pesticide bottles used as water bottles again and more and you also talk about the synthetic toxic laundry products that are infiltrating the market in the Global South and impacting people's health yeah, so do you see it as a larger problem right the pesticide and also a multiplicity of toxic products, toxic chemicals that are being exported, being marketed in the global south?
[00:15:20] Liza G.: So, you know, I witnessed things like people reusing pesticide bottles for water bottles. But as an anthropologist, it's always important, what we do is cross cultural comparison, right? In order to understand humans better, we try to look at our own cultures.
Right. As an outsider, so if we shine the mirror back, right, people are doing all kinds of crazy things in their homes using consumer products and unintended ways. You know, you see these all the time now on Tik Tok, creative ways to cook your corn on the cob, wrap it in saran wrap and stick it in the microwave.
Oh my gosh. The amount of phthalates that would be released into the food. Suggestions that you should put fabric softener sheets into your vent system so that you can smell your laundry detergents, uh, 24/7 and we know that those fabric softener sheets are releasing chloroform and formaldehyde into indoor air.
So I think this goes back to a deeper failure of our regulatory systems. To not only protect us from the misuse of a consumer product, but the many ways in which those products break down over time and get reused in unpredictable ways. So in the United States, our chemical regulatory system was really stillborn to avoid corporate opposition.
In 1976, the Toxic Substances Control Act grandfathered in the 62,000 chemicals in commerce at the time and green lighted them with no further toxicological study. And since then, 95 percent have yet to be studied. And in general, only about one percent of the more or less 100,000 chemicals in commerce today have been studied for carcinogenicity, right?
If you inject them in rats, will they give them cancer? We know practically nothing about the long term effects on immune systems, on hormonal systems, on childhood developments, right? The thousand and one ways that chemicals can cause havoc in the body. But one of the reasons why I got interested in doing toxic research in Guatemala in part, I'm trying to make some lemonade out of life's lemons, but also here in the United States and in industrial products, we live in this chemical stew from birth until death, right?
In the womb, right, babies are born with some 300 or more chemicals in their cord blood, so it's very hard to disentangle the effects of, you know, one chemical or another on human health. But in the context I work in, right, these are fairly healthy communities growing their own food, and their main exposures are pesticides.
And so there is an opportunity if epidemiologists got interested to really do what I call canary science, right? Taking seriously the experiences of the most vulnerable and using those experiences to guide the science.
I mean, how are we ever going to weed through 100,000 chemicals, right? To do that kind of scientific study. We need to listen to those who are most afflicted and because we all can detail the symptoms that we feel, right? And sometimes they're different.
I had noticed there's something in unscented fabric softener, which is not unscented. They actually have fragrance on the label. This is a trick that the corporations have learned because they know that people are growing concerned about fragrances and so they will label a product as unscented, which might just mean that it has kind of like a fragrance that they put in other fragrances to cover up the chemical smells.
And for me, if I'm around somebody who wears it, I get like some kind of swelling in my lower back and I get sciatica pain and it'll go away as soon, you know, after a few days, if I can avoid exposure to that person. It took a lot of like scientific sleuthing to figure this out.
And then just recently I had to have some work done in my home. And one of the construction assistants was clearly wearing that fabric softener and I hadn't even thought about this for four years, but I woke up the next morning. I could barely walk. The sciatica pain was so bad. And I was like, wait, where did this come from?
And I was like, oh, yeah, yeah, yeah. It's that fabric softener. Anyway, what is it in unscented fabric softener that is causing me to have this nerve inflammation and a particular part of the body? I don't know, but it's an interesting scientific question, that we could start to piece together some of our suffering.It could guide the research.
I spent two years bedridden with chronic fatigue after getting COVID. But what was exciting about this early pandemic was the way in which patients were in fast, rapid time on Twitter using polls, piecing together symptoms because, you know, there were things like the COVID toes, like, I guess people call them chill blades where people were getting these purple toes.
I mean, how would you know that that was an effect of a virus? But we started to piece that together and then doctors started to validate it. And it became one of the official symptoms and a long list of, you know, 20, 30 other symptoms that it took patient struggle to get the CDC to recognize a lot of the diverse ways that COVID was affecting the body because it creates a systemic inflammatory response that manifests itself differently, in different patients with other preexisting, conditions.
So in, in many ways, patients made long COVID, we created our own diagnosis by sharing stories. And I think that if we can continue to do that around the issue of chemical toxicity, then perhaps we can make some headway.
[00:21:25] Aaron Goodman: The people you lived with and got to know over time in Guatemala, I imagine there were elevated rates of cancer. Did people report to you, uh, either likely undiagnosed or diagnosed chemical intolerance?
[00:21:46] Liza G.: Yeah, that's an interesting question. Cause I think for a long time there has been, or the chemical industry has wanted to paint this as a white women's disease limited to industrialized countries, psychosomatic, right? An affliction of the rich. When in fact, many of my friends in Guatemala have reported to me that they are irritated by synthetic fragrances and there's been a market shift in just the number of fragrance products available to be purchased in Guatemala with the Central America Free Trade Agreement that was passed in 2005. That's opened the door to a lot of new exports.
I took a trip to Guatemala last August and somebody had opened a new market for air fresheners and they were everywhere. Absolutely everywhere. And, you know, I started talking to people and they're like, oh yeah, I have asthma. You know, and other, other sinus infections, right. You know, they're beginning to face a lot of the kind of chronic illnesses that we have in the United States associated with these exposures. And yes, there are rising rates of cancer that may or may not be associated with pesticide exposure, but likely so. So I'm hoping, as I'm recovering my own strength, there's an opportunity. To work with the public health system to document that.
And I found a mechanism to do that, where we could actually change the intake forms in public health post to be able to ask the question when someone comes in. With a headache, diarrhea, stomach cramps, malaise, exhaustion, could be the flu, could be an infectious disease, could be dengue, or that person could have sprayed pesticides the day before.
So to at least ask the question, right? So that when people come in, whether they're diagnosed with cancer, or they're just coming in with an undefined general illness, like illness, have they had a pesticide exposure?
So I gave a series of lectures in 2019, right before the pandemic on Glyphosate - roundup is glyphosate - and the Land of Glyphs, because this is the Maya region of hieroglyphs, anyway, I love alliteration.
So I was, the talk was called Glyphosate in the Land of Glyphs. And so, you know, speaking about these, these pesticide exposures, because this information is not available, right? So anyway, I give this lecture; people from the chemical corporation showed up. It was a really interesting talk. And afterwards a teacher came up to me and she was like, you know, I had to call in sick this week. I thought it was the flu. But then I realized I sprayed glyphosate on Monday in flip flops and short sleeves. And it was the next day that I fell ill, you know, and it was like, she had just assumed it was an infectious disease. Maybe she thought she had dengue cause her bones hurt so badly and she was so inflamed. But you know, it could have been from the pesticide exposure. So I'm really, really hoping that, as my health Improves that I'm able to pick up this project after the pandemic.
[00:24:58] Aaron Goodman: You also write that in the Global North, North America, other industrialized countries, that black, brown, and indigenous peoples and women are disproportionately impacted by chemical pollution and experience higher rates of chemical intolerance. That's a question. Do these groups experience higher rates of chemical intolerance and have their voices and experiences largely been ignored?
[00:25:25] Liza G.: Right. This is a question of environmental justice. Like indisputably, people of color, the global poor have suffered disproportionately from environmental exposures. Their lands are now targeted by mining companies, by other extractive industries, as a cultural anthropologist, I'm located in the Department of Native American Studies, and in the United States, Native American cancer rates, they've grown about four percent in the general US population, but have grown about 10 percent amongst Native Americans, because on reservations, right, the federal government allowed mining, uranium mining.
I mean, and all of those, really genocidal state policy decisions are now coming to roost because we know that many of these chemicals not only affect the generation that was exposed to them, but have epigenetically changed the DNA of eggs, in women, and they can create heritable, diseases over time.
When I write about Multiple Chemical Sensitivity and canary science, particularly in this an article I wrote called Canary Science about the pandemic. Strategically, I think that we need to find ways to connect the environmental justice stories of people on the margins who are indisputably suffering disproportionately from environmental hazards, but we need to connect them back to the wealthy and the rich who are also getting cancer, right?
So when I give talks, you know, I want to talk to the white men in the audience. And make them realize that they are vulnerable too, because we have wonderful scholarship around environmental justice, so many important denunciatory pieces, uh, documenting, um, the wrongs that are happening to communities of colors, but still there is no action, right?
Why, why is nothing changing? It's because those in the halls of power feel comfortable. They think it won't happen to them. And COVID proof was, you know, a global phenomenon that affected, you didn't know who it was going to, to slay, right? You didn't know who was going to die and you didn't know it was going to become permanently disabled.
And I was really taken by Chris Cuomo, who so early in the pandemic, I mean, here's this guy, cisgender, handsome, famous, political family, ivy educated, right? I mean, he's like, so many layers of privilege. But he was sickened early in the pandemic and never recovered, right? And so he became an interesting voice and he continues to invite people into the show to talk about long COVID and raising awareness that I think then helps amplify and helps illuminate the suffering of communities, right, that don't have that kind of media access.
[00:28:33] Aaron Goodman: As we aim to wrap up, it's been really fascinating hearing you. Thank you again so much for taking time. It's not always, or it's never easy for anyone to come out with this illness. And yet for some, like Chris Cuomo, you mentioned with the layers of privilege, it may be a little bit easier or a lot easier. Any thoughts about, for people who may be considering coming out with having chemical intolerance, multiple chemical sensitivity, recognizing that it's fraught with challenge.
[00:29:14] Liza G.: Yeah, well, I mean, I'm from the South, so I can say it was really hard for me to do this, to, you know, ask people to change their behavior. But if you flip it and realize that you're helping others live healthier lives by sharing this information with them, by being vulnerable in the ways that affects you, but also showing a little bit of the science about the indications that these are affecting everybody, and that the consequences may take years to show up in the case of cancer, but they do show up.
You have to realize it's not about you. When you become an agent of change, you allow that message to flow through you. And it makes the vulnerability, I think, a little less, scary. It's not about me. It's about the way in which I can make something of the experiences I've had by sharing them with others.
[00:30:16] Aaron Goodman: Well, thank you very much for that. These are questions and issues that I personally grapple with on a daily basis. And, uh, I think a lot of people certainly do as well. So thank you again, for taking time.
[00:30:32] Liza G.: Thank you for organizing this wonderful initiative. I look forward to hearing, hearing the program over the years.
[00:30:39] Aaron Goodman: You've been listening to the Chemical Sensitivity Podcast. I'm host and creator Aaron Goodman. The Chemical Sensitivity Podcast is by and for the MCS community. The podcast is supported by the Marilyn Brachman Hoffman Foundation and listeners like you. If you wish to support the podcast, please visit ChemicalSensitivityPodcast dot org.
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