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 and 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.

Small amounts of chemicals and synthetic fragrances in household and personal care products, paint, construction materials, along with pesticides, cigarette smoke, carpets, plants, and more can spark a cascade of debilitating symptoms. 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 Sarah Marie Wiebe, PhD. Sarah is an assistant professor in the School of Public Administration at the University of Victoria in British Columbia, Canada, and an adjunct professor at the University of Hawaii, Manoa. Her research focuses on community development and environmental sustainability.

She's co-founder of the Feminist Environmental Research Network Collaborative. Her 2016 book “Everyday Exposure: Indigenous Mobilization and Environmental Justice” in Canada's Chemical Valley won the Charles Taylor Book Award and examines toxic chemical pollution and environmental health for the Aamjiwnaang First Nation in what's known as Canada's Chemical Valley. This is an area near Sarnia, Ontario, near the U.S. border in the state of Michigan. Roughly 40 percent of Canada's chemical industry is located in this region. It's become known as one of the most polluted places in Canada. You'll hear Sarah talk about how First Nations people's health is impacted by chemical pollution and what it's like for residents of this area on a daily basis.

She refers to the chemical pollution as a form of slow violence, and talks about how Indigenous people are measuring the toll that toxic chemical pollution has on their bodies as a means of resistance. 

Sarah, thank you so much for joining me on the podcast. 

[00:03:20] Sarah Marie Wiebe: I'm grateful to be here. I appreciate the invitation.

I know that we're here today to talk a little bit about my research in an area known as Canada's Chemical Valley and that research began for me back in 2010 when I was a PhD student. And at the time I was working for a professor doing some research about contested illnesses. And I came across a film called “The Disappearing Male” on CBC, our national broadcast network here.

And it featured a lot of women actually leading advocacy efforts to try to raise awareness about some of the concerns. And that, that drew me to a woman named Ada Lockridge, who's an Indigenous Anishinaabe woman from the Aamjiwnaang Nation, where I did my research. And so that was my initial entry point.

[00:04:07] Aaron Goodman: I'd really like to ask you more about how it is that Indigenous peoples in Canada have come to live in what you and others call sacrifice zones and are exposed to toxic chemicals on a daily basis. 

[00:04:24] Sarah Marie Wiebe: Yeah. So the Aamjiwnaang Nation is an Anishinaabe Nation located in the municipal boundary of Sarnia, Ontario, and that's just across the St. Clair River from Detroit, Michigan. So this Indigenous community and the reserve is surrounded by the densest concentration of petrochemical and polymer refining in Canada and maybe even the world. You can see some of the industries from people's porches, from their bedrooms, from the band office, from the baseball diamond.

It's a place where it's just affected day and night. So you can see the glow of the chemical refineries. You can feel the vibrations and I myself have had the unfortunate lived experience of being at a ceremony, a death ceremony and the flares were going off and there was a siren. It was loud. It just felt unworldly. There's a lot of need for more research about the exposure, about dealing with the exposure, how to prevent it. And the problem is a lot of the companies They're not regulated very strictly, and so there's a need for more regulation about their exposure. 

[00:05:41] Aaron Goodman: You mentioned petrochemicals. Do you want to talk a little bit about the other term? Yeah, what was the other term, please? 

[00:05:49] Sarah Marie Wiebe: Yeah, so one of the main concerns has been around benzene, actually. And one of the challenges is that it enters your system and it leaves it sometimes within two days. And there was a recent exposure. Actually, Aamjiwnaang has been under a state of emergency over the past few weeks.I think it's now been about two weeks. And my understanding from some people I keep in touch with is that they went to the hospital and were turned away because the staff didn't know what to do. Didn't really know how to do any testing. And the challenge is, if you don't get tested within a few days, it's hard to test. And so there's just a huge need for more, I think, medical expertise and awareness about how to do testing, about the timelines, about what you're looking for, about the symptoms. 

[00:06:40] Aaron Goodman: We know MCS impacts many different parts of the body, different body systems. Do people know about MCS or environmental illness there?

[00:06:50] Sarah Marie Wiebe: I think you really touched on what a big challenge is that there's not a lot of awareness and understanding of Multiple Chemical Sensitivity and one would think in a place like Chemical Valley, there should be awareness and discussion of what that looks like. The reality is there's just layer upon layer of health concerns of people with elevated rates of cancer, cardiovascular concerns, respiratory concerns, skin concerns, mental health concerns. And, it seems as though people are really struggling to have the right kind of diagnosis. And again, I really think this is where we need some more, like medical professional training and that the sort of thing. 

Physicians who are living in and adjacent to and serving these communities, they need better awareness of these illnesses as well. So I think there's a huge gap in understanding and awareness and treating people's experiences as credible. I think there's a lot of concern with people feeling discredited and just turned away - that the understanding I have from people that I checked in with for their recent exposures. For example, to benzene and other sort of releases that there are really significant concerns, but there's not a very clear channel of 1st of all, what have I been exposed to? Because there's such a mixture of chemicals and then what do I do about it? And then who can help me seek redress or a response or the appropriate kind of like medication and support that I need. So there's just so many challenges and so many barriers. I think it starts to become overwhelming for community members. 

[00:08:25] Aaron Goodman: Your book gives a very visceral sense of life there in the community for the first nation's people surrounded by smokestacks, frequent sirens going off, preschools impacted, people say the fish, you can taste toxins in the fish. One person you talked to said they feel like they can't wear a mask all the time and still want to go running. Another person talks about no place of escape from it. There's just no serenity in this community. So, the question I want to ask you is, yeah, given the conditions that people are living with, is this environmental racism? Maybe just also add, you talk about this as a form of slow violence that's out of sight and mind for most Canadians?

[00:09:14] Sarah Marie Wiebe: Yeah, I think all those topics that you mentioned, they all intersect in Canada's Chemical Valley. And you mentioned the word sacrifice zone earlier, and I think that's a really apt and poignant term that kind of captures the complexity of this circumstance.

And I noted that leaders from the community use that framing. They use the language of sacrifice zone. Sylvia Plain, who's an Anishinaabe leader in the community, has used that language of sacrifice zone to talk about the everyday reality of what it's like living in a place where there's such a mixture of chemicals in the atmosphere affecting people at all hours.

Similarly, Chief Chris Plain, during his testimony for Bill C 226, which is an act to develop a strategy to address environmental racism and promote environmental justice, in his opening testimony, he used that language of sacrifice zone to explain how he feels like, and many of his community members feel like they're living in a sacrifice zone. 

The reserve cemetery, for example, is like a donut hole in the middle of all of these refineries. So there's a cemetery and then it's completely surrounded by the refineries. I had the privilege of working on a film a number of years ago called “Indian Givers” and there's a five minute clip of the film that I sometimes share with others, where it has some footage of the cemetery, and you hear the sirens going off, which are tested every Monday. Sometimes they go off when there's a release, or sometimes they go off by accident. It's a really complex sensory place to live, and it's really challenging, I think, to rest in peace for those who are deceased, but for those who are still living there.

It's hard to feel that sense of peace, but then at the same time, it's very complex because this is their homeland. This is their traditional territory. They've been living there for hundreds, if not thousands of years, and they've signed treaties in the late 1800s and they have claim to this land. And so it's really challenging in terms of policy solutions.

So sometimes. Others might say, Oh, why don't they relocate? It seems like one solution or strategy and they do have a larger land base. So there are other regions that you can move to, but I will note that it takes time to relocate, to build communities. And it's also really disruptive to your kind of like, genealogy and your intergenerational connections to place. .

There are many cases in Canada and globally that show the mental health impacts of relocation, too. So it's not an easy solution. And it's also a colonial solution to say, oh, we came here and we encroached on your line. We expect you to move. So, it's one possible solution, but it's definitely not the most ideal solution and that it's hard in terms of what to do.

Certainly, the plants need to be way more accountable. There are so many releases and it's fortunate that the community has their own air monitor, but now the burden upon them to be doing the monitoring of these kinds of complex readings of the chemistry, and then it's often as a result of their data analysis that they're realizing their exposures and then that has led to this recent state of emergency to stop work, close your windows and get the authorities involved in terms of the Ministry of Environment and the federal government as well. So it is a really complex place to live and the jurisdictional aspects make it further challenging and the legacy of colonialism as well. 

So I do think sacrifice zone is an app descriptor, but then I also want to be cautious about using it because I don't want to imply that this land is derelict or that there's no hope or no agency or no ability to resist what's happening. And so I know, and others are very moved by, I think, by the advocacy that's happening there. 

And I think that's, I would say that's part of what needs to happen is more listening, like the government authorities need to listen to the life experience of people like Ada Lockridge and others, many of whom have gone to the media and shared their stories, and then policy solutions should be co-created with those who are living there with that direct experience. I think that's one strategy. 

[00:13:37] Aaron Goodman: Maybe we can just focus on something you mentioned, that the burden falls on people in the community itself to monitor the level of exposures, chemical exposures that they experience. And you write about biomapping. Could you talk a little bit about what is biomapping? Do you see it as a form of activism and citizen science?

[00:14:01] Sarah Marie Wiebe: Yeah, absolutely. The community has engaged in all these really incredible strategies to collect their own data. And so body mapping is one strategy that they've used. And so body mapping, for example, has involved community leaders like Ada Lockridge going door to door. And doing the survey of people's health concerns, taking that data and translating it onto these large scale body maps, representing different kinds of bodies within the community and visualizing them, these large body size charts with sticky notes that reflect the different ailments from mental health to cardiovascular to arthritis, to all kinds of illnesses and mapping them.

And. That's such powerful, visual, visceral knowledge and research. At the same time, it continuously gets discredited. So the only publication of that data has been in a nonprofit report by the environmental NGO Eco Justice, and I referred to it in some of my research, but court cases, for example, have thrown that out in their proceedings, noting that it's just kind of situated knowledge. It's not validated by external experts, for example. 

So I think there's a bias in our legal system against community-based research saying, you need this sort of external validation to document these concerns and to treat them as a kind of truth. And so, in a lot of the kind of policy advocacy that I do, I talk about more of a sensing policy approach where communities situated bodies of knowledge and expertise that should be treated as a kind of evidence.

And unfortunately, our court system and some of our other kind of organizational systems don't know how to recognize and acknowledge that kind of life experience or lived experience in many of our fields, especially the health field, there's an overemphasis on quantitative data that is cross reference, but lack of recognition about situated experiential knowledge and data.

I would argue that those living there are the experts of their own life experience. They know what's happening, what's affecting them. And our medical system, our regulatory system, our policy makers, we need to recognize that lived experience better and to treat that as evidence. And so that's the challenge here, is this contested form of evidence often in these court cases, and there's a real lack of kind of follow up and repercussion.

And so, in terms of my own sort of policy advocacy, I'm really trying to articulate for civil servants, perhaps, who are making regulatory changes, that they need to take life experience seriously and not just turn to numerical stats and externally validated data. 

[00:16:55] Aaron Goodman: Is it your understanding that other Indigenous communities and marginalized groups, Black people in Canada, the U.S., women, others, underrepresented communities are disproportionately impacted by toxic chemical pollution? 

[00:17:14] Sarah Marie Wiebe: Yeah, absolutely. And one of the leading scholars in an international and American context has been Dr. Robert Bullard and his work on environmental racism has really exposed the challenge of this across the U.S. And that in a Canadian context, there's a scholar named Dr. Ingrid Waldron, whose research also highlights this in various Canadian examples, and some of their sites of investigation have looked at race and exposure, including communities of color, Black communities, for example. 

And so I think there's a lot of need to look really seriously at that kind of socio-economic status and geographic location of who's living where and the power relations that unfold in terms of geography and proximity to some of these chemical refineries and toxic places. And I think that's the challenge of our society is that there's so much wealth and profit and prosperity in these industries that make particles that we need for our consumptive lifestyles and our habits and car parts and so on. We need these chemicals, but they have really serious consequences for people's lives. 

And there's such a power imbalance in the struggle for recognition of that for redress of that it takes a lot of lobbying and activism and political will. And that's where I see my role, as trying to be a translator or a bridge between these different knowledges and it's not always easy, but I come to terms with this sort of label of the academic activist, really wanted to support the stories and voices of those with lived experience and then try to intervene on policy processes.

But it is hard because so much power is linked to certain refineries and the capitalism and the wealth that comes out of that. And I do recall being at a meeting with representatives from The Aamjiwnaang Nation to meet with regulators. And I remember just in the waiting area, watching as a high level executive exited the premier's office, and we entered a room to talk with lower level staff. And in that moment, I realized this is about access to power, like certain groups just have more direct access to power and decision making, which relates to capitalism and material wealth. So this is a huge socio-economic challenge that we see in our society in Canada and the U.S. and globally as well.

[00:19:39] Aaron Goodman: It's really interesting to hear you frame it in terms of power relations. And if we could open it up a little bit, perhaps. I wonder if we could talk about chemical refineries and industry, if there's a thread to the daily exposures that all of us experience when it comes to exposure to household products and cleaning chemicals and perfume and car exhaust, et cetera. And sometimes I feel like we're all living in a sacrifice zone. For example, when I drop my children at school and smell the laundry detergents and air fresheners, wafting out of the building, the pesticides that are sprayed from the air that are on the food we eat, I know we try and avoid it, but is it your sense that power dynamics are at play and I've been waiting to talk to someone who perhaps could, and I won't impose, but maybe look at it this way. Are we all in sacrifice zones and are we all living in this dynamic where there's a real power imbalance happening? 

[00:20:41] Sarah Marie Wiebe: I think looking at power relations and power dynamics is a really pointed way of talking about this. And I think I self identified earlier as a political ecologist. And so these are the exact kinds of questions that we look at, the kind of power dynamics in relation to our environments and putting on that kind of political ecology lens. I would say that absolutely it's really important to look at the uneven distribution of material wealth and prosperity and the power that chemical refineries have and that example of watching the high level official exit the premier's office as we entered the building to meet on a lower floor with a lower level staff. That was just such a clear example of the hierarchy in our society of power relations and how it's related to material wealth and prosperity.

And so, this is a huge structural challenge. And, in terms of the word sacrifice zone, it's an interesting phrase that I think it's been used by the military in the past, for example, to talk about places that weren't seen as full of life, that you could just bomb.But every place is full of life. That might be animal life or plant life. And so I think the root of this is a sort of political ecology problem where we have such a hierarchy in our society of money and material wealth and humans and then plants below. And so I think this kind of hierarchy and way that we privilege certain forms of life and value certain aspects of our society in this kind of hierarchical way has detrimental effects on our health.

And so you're really touching on the heart of problems that political ecologists take up and I think someone that was on this podcast series before, Stacey Alaimo, I think talks about this as well. So I see a lot of connection with Stacey's work in terms of the uneven power relations in our society and the need to think differently about politics and ecological dynamics.

Yeah, I think, perhaps some communities feel acutely the effects of a sacrifice zone in more racialized ways than others, but to a certain degree, we are all affected by our exposures and that's sometimes so unknown and mysterious and hard to document. And so, that's where I really think there's a role for our medical schools. I think we need more training in taking these kinds of illnesses or diagnoses seriously, because to my knowledge, there is not a lot of good training right now in Canada and perhaps elsewhere. And so that could be another really important step in terms of more kind of credibility and awareness of Multiple Chemical Sensitivity of diverse exposures, whether it's our homes or in our atmospheres. I think as a society and in our training, professional lives, we need much more recognition about this.  

[00:23:43] Aaron Goodman: Do you think there's something that's particular about toxic chemical pollution that makes it easier for companies to get away with because it's often invisible? 

[00:23:54] Sarah Marie Wiebe: I think you just nailed it right there. It's how it's invisible and that's what's so scary about a place like Aamjiwnaang, for example, and I did live there for a few years while doing my PhD research, so I had this kind of first hand experience and account, and you were just affected on every register all the time. And I think people that live there, they almost forget how unusual it is, but you go to the Tim Hortons on the reserve and you can see the yellow kind of windsocks blowing and they're trying to indicate to you where to move in case there's an alert; move away from the wind direction. So there's a lot of onus placed upon residents and workers and individuals living there to be aware of their circumstances, which I think is really unfair.

It's very unfair to shift that burden to download the burden on to individuals and certainly there's the politics of visibility at play because at night, that's often when some of the refineries, they flare and they burn off their emissions and you can't see it because it's dark and it's nighttime.

There's a lot about the sensory visual aspects to this. And I think you really articulated that well, where it's sensory, but you, if you're not living there, as most policymakers aren't, they're not living there. They're far away. It's hard for them to understand the lived sensory effects of what's happening.

That's why I've been advocating so strongly for this kind of sensing policy approach. And it's really powerful when leaders like Ada Lockridge, her and other leaders in the community, they'll take high level officials from the UN, for example, on these toxic tours to try to give them a sense of place.And it's hard not to conclude that tour and tears and so deeply. Affecting and I certainly had that experience when I first went there and I felt compelled; oh, I need to work in solidarity with this community to raise awareness about this. It's very out of sight out of mind. 

And sometimes when I present about the research, I'll have students or others approach me and say, oh, I used to live in Sarnia and had no idea there was a reserve in the middle of the refineries and that's people that are from the area. So it's certainly an out of sight, out of mind place, that I think needs a lot more attention and I really hope to amplify the voices and perspectives of those who are advocating there and trying to create space within our formal sort of policy structures to see their voices count and be heard.

[00:26:25] Aaron Goodman: Has your research given you insights into the hazards that we all face, because we all don't live next to, or in the midst of, or in the middle of industry, but we're all exposed to chemicals on a certain level. Are you concerned about if we widen it up to how all of us are exposed to chemicals and is there a power imbalance at play when it comes to the products that we're inhaling or breathing and eating?

[00:26:56] Sarah Marie Wiebe: I think there's definitely a power imbalance at play because many of the companies that produce these toxins make a lot of money and they're profitable and I think this is a result of our capitalist consumerist society and that's often not for consideration of the health consequences.

And I know in Canada and the U.S., there are health regulatory bodies and their job is to look at the science and weigh the pros and cons. But I still feel like there is a gap there, in terms of citizen voices and resident voices and those with direct experience. And that's what I really want to advocate for is that our policy makers and our decision makers, our regulatory bodies and authorities that they start taking these sites, these stories, these life experiences more seriously and treat that as just a as form of knowledge as these scientific studies as well, because often scientific studies, they need large sample sizes.

But what about the small scale stories or experiences, the individual story or the community story? That's where there's a huge power imbalance. For example, the county of Lambton, which surrounds the city of Sarnia and Aamjiwnaang, that's over a hundred thousand people. And there's a small reserve in the middle.

So when you're doing any kind of study that scales out beyond that, you're diluting life and lived experience of those who live there. And I remember the powerful words of Christine Rogers, who said the ongoing health studies taking place, they're just evidence of the politics of dilution, and I think that's a really poignant way of putting it. And that's a real problem is that we're diluting the life experience of those who are living in these sacrifice zones. 

[00:28:38] Aaron Goodman: Thank you so much, Sarah, for taking the time. 

[00:28:41] Sarah Marie Wiebe: My pleasure. Thank you so much for the invitation and for all of your work raising awareness about these topics. So important. 

[00:28:47] 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. It's supported by the Marilyn Brockman Hoffman Foundation and listeners like you. If you wish to support the podcast, please visit ChemicalSensitivityPodcast dot com. Your support will help us continue making the podcast available and creating greater awareness about MCS.

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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. The 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.