Aaron Goodman [00:00:00] You're listening to The Chemical Sensitivity Podcast. I'm Aaron Goodman. Can public spaces ever truly be safe for people with multiple chemical sensitivity? Why are so many buildings, workplaces, schools, and public environments designed in ways that exclude people with environmental sensitivities? My guest today is Aimi Hamraie, Canada Research Chair in Technology, Society, and Disability, and Associate Professor at York University in Toronto.

Aimi's work explores disability justice, accessibility, architecture, and design, including how public spaces can include or exclude people with disabilities, including people with MCS. Together, we discuss [00:01:00] living with MCS, the hidden barriers many people face in classrooms, workplaces, and healthcare spaces, and why accessibility conversations often overlook air quality, fragrance exposure, and MCS.

We explore how barriers to safe public spaces have left many people with MCS feeling pushed out of urban environments, sometimes relocating to places like Snowflake, Arizona, where communities of people with MCS have settled in search of safer living conditions. We also discuss how people with MCS and chronic illness created online community spaces long before COVID, and what the pandemic revealed about remote access as a vital form of accessibility.

And we consider what truly MCS-inclusive design could look like in homes, schools, [00:02:00] workplaces, and public life. Please check out and share a link for the podcast's new webpage. It's listen.chemicalsensitivitypodcast.org. Please share the link with anyone in your life who may be interested in learning more about MCS, and please subscribe to the podcast wherever you get your podcasts.

To learn more, follow the Chemical Sensitivity Podcast on YouTube, Facebook, X, Instagram, BlueSky, and TikTok. And you can reach me at aaron@chemicalsensitivitypodcast.org. Thanks for listening.

Aimi, thanks so much for joining me on the podcast. Thanks so much for having me. Really grateful to you for taking the time. You mentioned before that you have some- Experience with MCS. If you're open to it, would you like to talk about any of that? 

Aimi Hamraie: Yeah, absolutely. Um, so I identify [00:03:00] as a disabled person, and I'm autistic.

I have chronic illnesses, I have chronic pain. Um, and I, uh, came to realize that I probably had MCS in my early 20s, um, when I met other disabled people who were having experiences that, um, were like the ones I'd been having for years but I didn't really have language for, um, that my doctors didn't really seem to, um, understand.

And, um, and so, you know, I'm really grateful that I found community when I did because I also learned about all these different accessibility practices, like the fact that you can actually ask people not to wear fragrances when they're around you or, um, you know, I remember having a whole conversation with my parents long after I'd moved out of their house about what laundry detergents and cleaning products and stuff they use.[00:04:00] 

It's something that's, you know, it's just been with me for a long time, and it's, it's improved my life quite a bit to be able to, uh, facilitate access around, um, and to kind of like create a home for myself where my exposures are more limited and I can kind of do things and, um, feel more alert and less sick than I did before.

It's really interesting you mentioned that, the time it can take to understand what's happening in one's body. Yeah. Yeah. Especially when you're a younger person, um, and, you know, I grew up in a world where, uh, disability wasn't really part of like the public discourse, and if it was, it was, uh, you know, uh, represented in really particular ways.

Something like environmental illness, um, which is already, like for so many people it fee- it seems kind of [00:05:00] vague or unknowable, um, it was really hard to pinpoint. Mm. Then I found people who helped me do that. Mm. And I also, um, you know, in my research, in the research that resulted from that kind of learned about histories of people organizing around MCS, and it was really powerful for me 'cause I was like, "Oh, okay. It doesn't have to be this experience of like an individual person on some kind of medical journey. It's actually something that people can come together around." And when I started my first academic job, I actually had this experience where Every time I would walk into the building where my office was I would get really sick. Like, my eyes would start watering, my nose would be running. People always thought I was crying- Mm ... 'cause it was, it was so extreme. And, um, and I started to [00:06:00] talk to my coworkers about it, and it was really interesting 'cause all the women were like, "Oh yeah, that happens to me too, but no one ever believes me."

And the women in that office were the ones who tended to work out of their offices more often, and the men tended to be doing other things and, and being outside of the office. And so we, you know, in talking to each other, we were able to, like, get the university's facilities department involved, and they came and did all these air quality tests.

And they, they figured out... Like, I was like the miner's canary in this situation. They figured out that because it was winter and the heat was on, they had stopped allowing any airflow into the building because it's more energy efficient to not let in fresh air. But there was a really high level of CO2 in the, in the building.

And that's why I was experiencing what I was, 'cause I already, like, am very [00:07:00] sensitive and I have asthma and, and these things. It was more extreme in presentation in my body, but other people were also having- Mm ... brain fog and, like, all kinds of other symptoms. And so we actually got them to change the policies around air.

It's kind of wild to think about, like, everyone's just in there breathing CO2. And then the people who are, you know, working in administrative positions and stuff, like, tend to, um, experience, like, day-to-day harm from it. And so- Mm. And I imagine fragrances too. Yes. People's, uh, personal care products that they're bringing in.

Oh, yeah. There's nothing being, um, washed out. Yeah, absolutely. I was masking long before the pandemic started because it was one of the only tools I had, um, especially at work or, like, places like the airport, on airplanes, like, you know, where you're just sharing air in such close proximity. Uh, and so it was really interesting kind of when the pandemic started to already have [00:08:00] all these tools in place, like have air purifiers that have the filters, to be able to help other people figure out how to access those things too.

Aaron Goodman: Yes. As you say, people with MCS have been masking and thinking about air filtration long before. Yeah. And in your day-to-day, Aimi, as an educator and researcher, do you wanna talk a little bit about some of the challenges that many others also experience going into work? I meant, you know, um, when you encounter these, um, triggers, fragrances, chemicals in the air, um, what's your day-to-day like these days?

Aimi Hamraie: Well, you know, these days, so now, um, where I work, there's actually, uh- Like in the buildings that I work in, there are signs everywhere that say, "This is a fragrance-free space," which is really interesting. I've never seen that in the US, but I've recently moved to Canada, and, um, this is something I appreciate as like it's just understood as part of...

You know, here disability rights are considered part of human rights, not [00:09:00] civil rights necessarily. It's like a different framework. And, um, so they're like, "Oh, yeah, as a matter of human rights, people shouldn't wear fragrances when they're in this building with other people." And- Mm ... so I- it's like, it's like a little bit better in some ways.

It's like really, it's interesting j- to be in a place where it seems normal to say, "Hey, I'm really sensitive to this thing. Could you not use it?" Because that was not really my experience previously. I spent a lot of my, you know, higher education years just being like really sick and not knowing why and, um, and, you know, missing school, um, just being like cognitively affected in different ways.

Aaron Goodman: And Aimi, do you want to talk about, um, how your experience with MCS has influenced your research? 

Aimi Hamraie: Yeah, for sure. [00:10:00] So one of the first books I ever read about MCS was, um, a scholar, a feminist Indigenous scholar, M. Murphy, wrote a book called Sick Building Syndrome and the Problem of Uncertainty. I'm not sure if you've read it, but it's like this amazing feminist history of science book kind of about the, um, invention of, uh, air conditioning and high-rises and then like how all these women office workers especially started to get really sick and organize around MCS.

And it was like such a transformative book for me to read when I was like 22 or 23, 'cause I was like having these experiences and meeting other disabled people and then learning about how it connects to this history of feminist organizing. That was also the time in which I started doing research at the intersections of architecture and the history of science on accessibility.

I started [00:11:00] to think about things like who is the world built for? And, um, the answer to that is not just like Some, like, vague idea of, like, a normal person. It's actually very scientific. The information, the evidence that architects and designers use to b- make buildings or design products or different systems, cars, airplanes, like, all of this, um, is really based on statistics of how much space bodies take up.

And then to a more limited extent at different points in history, also understandings of internal bodily systems. So in the '50s and '60s, the industrial design firm Henry Dreyfuss Associates was, um... They published this book called The Measure of Man, and then later it became The Measure of Man and Woman, and it was a lot of, like, anthropometric data about bodies.

But then it also included, because it was during the Cold War, it included things like, you know, you have to protect bodies [00:12:00] from exposures. It might be, um, chemical, uh, radiation, nuclear exposures, biological weapons. They were, like, encouraging people to build buildings that, like, kept the air clean and, um, you know, had proper filtration and things like that.

Um, and so, like, I became really interested in how, um, you know, at different times in history, the id- the idea of what human bodies need and do, um, really shifted. And then also as we get into the kind of disability civil rights era, what considerations of the body do and do not make it into, um, how architects are designing for accessibility.

I wrote a book about the history of the universal design movement, which, um, is really, like, interesting and capacious and at various times has really debated, like, what issues [00:13:00] are part of this. Historically- Mm-hmm ... you know, mobility access, wheelchair access, and then- Mm-hmm ... over time, um, you know, access for blind people, access for deaf people.

You know, there were, uh, MCS activists around in, in the '90s and even in the '80s who were trying to get universal design people to think about issues like air quality. Um, and no one Really knew what to do with it. Like, there was this kind of like, oh, you know, um, like this is so vague or unknowable. We don't know if it's real, or it's just so outside the realm of how we tend to practice inclusive design, which is to create more space. But when the issue isn't more space, um, then there's really a lot of pushback, and I've seen that also, like, in, you know, the work that I do, um, with like helping to kind of research [00:14:00] and create accessibility standards is on the one hand, there's a recognition that, uh, people with MCS exist, and then there's also like, okay, but how do you even create a standard for something like this?

One of the, um, conversations that we've had in that space, uh, has been, like, bringing in experts in, um, b- both in, like, air quality and ventilation and things like that, and disabled- Mm-hmm ... people who have lived experiences of MCS, of like other kind of like respiratory conditions or people who have long COVID.

There is so much scientific research about this actually that we could use to create standards. Um, but it's happening often... Like, it's like a conversation that happens not so much in the realm of accessibility, but in sustainability, I've found. Like, there are sustainability standards for architecture- Mm-hmm

that are [00:15:00] about basically not exposing construction workers to chemicals. Mm. So because there are known health consequences of that, um- Mm ... and then by extension, when a building follows those standards, they're, they're gonna have low VOCs. They're not gonna have, like, as much off-gassing and things like that.

Like, these things about, like, new buildings that make us sick, um, the sustainability people have really thought about. But for some reason, like, the disability access people don't wanna think about. Mm-hmm. So it's been, it's been kind of a, an ongoing conversation, and it's been interesting to, like, meet people, um, who identify with environmental illness and things like that, like through that process and to hear about how long they've been advocating for accessibility standards around this. If we think about it, what if the pandemic response, the response to the pandemic had been, like, dramatically improving air quality for everyone? Kids wouldn't [00:16:00] get sick at school 'cause they're, you know, all the viruses would get filtered and all these things.

It would be just so beneficial for so many people to have better air to breathe. But it's, it's like one of those things where it's, it's like if you have kind of an invisible or, or non-apparent condition, then it's easier to ignore, um, than to have to, you know- be responsible towards I wonder if you want to talk briefly about how people with MCS are, are not part of that discussion.

Aaron Goodman: I think of my own physical spaces at the university where I teach, the windows are very small. If you open them, you're opening to traffic. There isn't, and there isn't really any air filtration at all. So for someone with MCS, there really isn't anything in place to, to help protect them. And, and that is, in your view, whose oversight is that?

Aimi Hamraie: I think it's, um, a combination of, you know, codes, like building codes, uh, architectural design [00:17:00] practices, engineering practices, because, you know, air- airflow is an engineering issue. Um, and, uh, every aspect of airflow is engineered. And so when buildings don't think about ventilation, you really need to have redundant systems.

For a lot of accessibility, like, you don't wanna just have one elevator, 'cause what if it breaks? Like, similarly with air, it's like, sure, opening a window is great, but also, like, making sure that your HVAC system has, like, really, like, top-notch filtration is really important. Not having a buildup of CO2 and things like that, that I was talking about before.

In some places, these things are regulated by law, um, or by local building codes, and in some places they're not. And that's just, like, a tricky thing about the built environment in general. There's a building, the building that my office is currently in at school, which I don't really use a lot, um, but we're building a lab space in there, and it's, it's a [00:18:00] brutalist building from the 1960s.

It's really beautiful in some ways. Like, there's, like, floor-to-ceiling windows and stuff, but there's no way to open the windows. But because there's no ventilation, we can't do those things in that space- Mm-hmm ... and have it be safe for everyone who's there. You know, if, if there are any architects listening to this podcast, like, I think it's just worthwhile to think about why do we create such hermetically sealed spaces.

I think the standards have changed since the '60s, of course, 'cause we also know it's, like, not great for fire and other things. But, like, there is an opportunity, um, if we follow the lead of, like, the sustainability people and the standards that they're creating, there's an opportunity to really think about, like, exposures, airflow, the materials that we're using, like, all of these things, um, from the beginning so that, uh, we don't have a situation later where someone's like, "I can't even open my window 'cause there's so much smog [00:19:00] outside," you know?

And then there's the, you know, upstream. It's like, what are all the industries that are making us sick and, um, producing the things that are in the air and the water and that get added to the air that we breathe that, um- You know, we, we maybe, like, less often connect to those sources- Mm-hmm ... than to what is immediately around us, but I think it's really important to be able to do both.

Aaron Goodman: How much more work is there to go? And, I mean, it's such a huge issue, right? Maybe are there any, perhaps a couple of simple things that come to mind? What, what, what could be prioritized to ensure that people that's... 'Cause mostly we can't go in public spaces. Yeah. Right? Yeah. Mostly we're excluded. Right.

Aimi Hamraie: You know, we're, that's, we're not part of the design, so- Yeah ... what needs to be done to help us be able to access safe spaces? I mean, it, it is a big question, [00:20:00] and in part because s- there are people with very different needs, I think, and also, like, the source of their MCS might be different. But I think if we kind of, you know, I think a lot about, like, there's so many tens of thousands of people with long COVID now, and what would it mean to even build buildings for long COVID or build a society that uses that as kind of a baseline? And I think it's similar with us. Really prioritizing indoor air quality just seems actually incredibly simple to me.

Like, it's like in our homes we do this. It's scalable. Filtration technology exists. The technology exists. We could just, like, help people not get sick, and, but if you think about this, like, politically, like, there are all these barriers to it. Like, p- some people would have to admit that any of this is even real or that they [00:21:00] should care about it.

You know, it of- it seems like some sort of unfunded mandate or something, like, if you were to require it legally, and so people don't wanna do it. But, like, we really, like, literally everyone, even people without MCS, could just be, like, breathing better air, and I think that that- Yeah ... would be amazing. I think also just, like- You know, I don't know how to keep people from wearing fragrances and stuff like that on a mass scale, but it is really unfortunate that so many of us have to personally advocate around that constantly. Like, it's exhausting. It is. Um, and over a lifetime, maybe you find your people that you don't have to advocate for that around. But, you know, like, there's been really such great, like, work in the disability justice kind of world and community around, like, sharing resources and doing mutual aid around this.

Many years ago, the activist Leah Lakshmi Piepzna-Samarasinha wrote a guide that I remember reading as a young person that [00:22:00] was, like, basically, like, how to find fragrance-free products if you're a person of color and, like, you're, you know, you need, like, certain, like, curly hair products and stuff, which I fall into this category.

And I was like, oh, like, we can, we can share our knowledge with each other and then give it to other people, and they can use it. And it's actually amazing how that guide has traveled over time, and people have kind of created their own. And, um, so, you know, it's like I never wanna give up on that, like, people's infrastructure side of things.

At the same time that I really wish we didn't have to work so hard all the time. What stuns me, Aimi, is the lack of awareness that fragrance is actually really harmful for everyone. Do you think there needs to be more knowledge of the harms of fragrance? Yes. I mean, yeah, especially from the kind of industrial and, like, production side.

Like, yeah, I mean, there are fragrances that, like, can [00:23:00] cause endocrine disruption and things like that. Um, or they're often, like, chemical derivatives or, like, byproducts of other things. I grew up in a home where, like, people- People in my household really liked wearing fragrances, and I think that's, like, part of how I ended up feeling so sick, um, and then feeling better when I wasn't around them.

So there's, like, that part. There's also, like, the... You know, it's like institutions, which are the entities that buy products for masses of people, which is different than, like, when you go to your friend's house for dinner or something and you bring your own soap to wash your hands with. People aren't always aware that, like, these little consumer choices affect a lot of people, and that they can spill over and, like, affect people significantly across time.

But then with certain things, we do adapt. So, like, you know, for example, like, I have a severe peanut allergy. When I was a [00:24:00] kid in the '80s, nobody else had that, and so it was, like, this really annoying thing to have to navigate. Nowadays, from what I understand from my friends who have kids, like, they're...

Everyone's, like, on top of it. Like, "Nope, no." Mm-hmm. Like, everything has to be nut-free. And I know people complain about that sometimes, but it's, like, known that in order to protect people who have nut allergies, you need to have- Mm-hmm ... nut options. I think that, like, my nut allergy probably comes from the same place as my MCS.

It's like some sort of mast cell activation. And, and so, like, it's like for me, these forms of access feel really connected. There are other, there are other things like that that I think, um- Like smoking, for example. Yes, smoking. That's often one that's talked about, right? Oh, right. We have, in many places, made smoking indoors illegal, set parameters around smoking outside.

And sometimes in disability community, we talk about, like, you know, people can have really [00:25:00] different access needs. Like, some people need to smoke for their anxiety or something like that, and, like, you know, creating a space for that, right? Like, airports have smoking lounges and stuff, but then, like, not doing it on the airplane.

Um, you know, similarly, like, on the airplane, uh, they used to give out peanuts, but so many people- Mm-hmm ... complained that it was an ADA violation. They stopped doing that. So it really does feel like it should be possible to ask people not to wear fragrances, or at the very least not to spray them, like, when they're in the space right next to you.

It's, like, a very neoliberal thing where we end up having to advocate for ourselves or mask ourse- like, uh, wear masks ourselves, bring our own air purifiers. It'd be nice if the building design and the people who choose the products and the air filtration systems would be more on top of it. And do you think that's coming down the pipeline, you know, across the board?

Aaron Goodman: Do you think we can look forward to [00:26:00] a day when we won't have to worry about accessing public spaces? 

Aimi Hamraie: I really hope so, because the research is there, and the products are there. It's really about how do you get people to include them in their spaces. Someone might say we should do that through legal channels, which can be effective in certain ways to set a baseline.

Someone might say we need to create incentives. It's the same with other accessibility measures and products. There are ones that are required by law. There are ones that go beyond the code, but people kind of promote them to builders and designers and stuff. I'm very skeptical of any claim that something is universal, but, like, breathing is literally universal.

Every single person needs to breathe better air. If we were to design systems that reduce chemical exposures, reduce exposures to viruses and things like that, like, there would just be [00:27:00] so mu- so much, like, greater kind of wellness. People in general would feel better. Kids in elementary school wouldn't get sick all the time. Like, we could go into public space. 

Aaron Goodman: And cognitively, you talked about, on the one hand, the coming together and the c- the advocacy that, that Michelle Murphy has written about, right? You know, but we also experience on an individual basis that the need or the, the pressure to advocate for ourselves, and sometimes it often feels, it often feels like a me problem, and it can be very isolating. I wonder if you have any thoughts on that, that kind of dichotomy between the n- the coming together and the isolation we can experience?

Aimi Hamraie: I think it's really hard. It's something I experienced kind of in different parts of my life where you're, like, the only one that has this one particular experience.

Recently, my lab finished up a project called the Remote Access Archive, where we were studying, like, how did disabled people find [00:28:00] each other- Mm-hmm ... remotely, like, across long distances, and do things to address isolation. And there's so many examples in that archive of, like, many different disability communities, blind communities, deaf communities, and I really appreciated and resonated with this incredible set of materials that the s- the community of people with environmental illness in Snowflake, Arizona gave us. They include people who can't use the computer for more than, like, five minutes at a time. Mm-hmm. And yet they figured out through all these really interesting practices how to run a website, how to have, like, global newsletters, and really find people, and they don’t have to be in the same space, although sometimes people move to Snowflake, Arizona, because they know that there are other people who have similar access needs around them. And I think that that's, like- With so many things, what we have to do, and we're lucky to live in this highly connected time [00:29:00] where like, yeah, my immediate coworkers may not get this thing, but I can find someone else who gets it.

And it can kind of, you know, um, scale up from there. Sure. It's really about building power, I think. 

Aaron Goodman: That’s amazing. I'd like to hear more about that. And people you mentioned in Snowflake, Arizona sometimes can't use computers because of electromagnetic radiation, right? Yeah. Sensitivities to EMF. You write about during COVID, you know, this really compelling example of people having parties, dance parties online.

Aimi Hamraie: Yeah. Yeah. Yeah, so that was a project that we, um, we started doing in March of 2020 because so many people, like, in my lab and in my community, we had had to do things remotely for so long. And so we wanted to show, like, all the things we already know how to do that non-disabled people are sort of doing for the first time.

[00:30:00] We wanted to kind of make it, like, fun and festive and create a space for connection. And so we had these Zoom dance parties, and people would, um, show art. There'd be music. There was ASL. There was captioning, um, and like, all different kinds of, like, interactive activities and stuff. Um, and it was like, it was really great to just be able to say, like, "Yes, we have been isolated, but we know what to do," in this time when so many people did not know what to do and were, like, you know, feeling really lost.

So it's really kind of like testament to disabled wisdom, I think, that we were able to do that. Mm. Lots of other folks have since taken up that model and hosted other parties as well. And so online access, remote access is really critical for people with MC, as, as we know and as you've talked about, yet we have to, again, advocate for it.

It can be challenging to prove that we're [00:31:00] actually ill- Right ... to be able to, to get that access. Yeah. It's like a knowledge barrier and a communication barrier, and also a thing about being believed and taken seriously. And it's even worse for people, I think, who are, like, racialized or, like, have some aspect of their identity where, like, they are doubted in general- Mm

and, like, seen as, like, complaining too much or something like that. So many people become unemployed or experience homelessness because of accessibility barriers- 

Aaron Goodman: Yeah ... due to MCS, right? And, um- It takes a lot to advocate for oneself, and we need a lot. We need doctors to advocate on our behalf, right? It's very challenging.

And so why do you think MCS is often overlooked or left out of conversations around accessibility? [00:32:00] 

Aimi Hamraie: I think that, you know, one of the reasons that I was kind of alluding to before is that accessibility for so long had been in the realm of physical accessibility, and it was tied to specific knowledge bases, like anthropometric data about, like, body size or wheelchair size and stuff.

And so when something isn't about space in that way architects or access people perceive it, it's hard to even think about what kind of research they would draw on to create standards and stuff. But then I think the other thing is, like, you know, like MCS historically, um, was, like, considered to be very gendered in some ways, even though we know that's not true.

There are, like, the people who were, for example, like in M. Murphy's book, like organizing around, like, the workplace and stuff, it was like women who are secretaries. And we know there's so much documentation that, like, women and feminized [00:33:00] people are not believed- Mm-hmm ... when they, like, bring forward their health concerns.

And I think that's true of a lot of us who have chronic illnesses, too. It's really hard to pin down what it is, and so people don't think it's real. Sometimes people imply that we're making it up or that we're, like, hallucinating or... I mean, it's even worse for the people who have, like, electromagnetic, like, sensitivities and stuff like that.

There's just, like, all these, like, stereotypes about them and stuff. I think that's why it's like a lack of solidarity. I will say that there's this generation of people who were brought up within a disability justice framework, and I would say the majority of them are people who are chronically ill or have MCS or something like it, and who kind of shifted the framework and said, "We can't just think about access in terms of mobility."

It's not that we exclude mobility, but there's, there's so many more forms of access out there that we need to [00:34:00] explore. And some of the ways that we create access are not by appealing to the government or the state of- But by creating like the knowledge networks and practices amongst ourselves that we need to survive, and then from there to figure out how to scale it up, sharing information about what makes us sick helps the next person.

I can think of so many formative conversations I had with people who are like, don't use this cleaner. Like it says it's fragrance free, but it's really not. Do this instead. And then like that knowledge, you know, accumulates. What happens to us psychologically and socially when we cannot go to work, we cannot go to the hospital or the doctor's visit, we can't go to cultural spaces or social gatherings.

Many of us experience profound isolation because public spaces are harmful to our health as people with MCS. It's so, it is very painful and it's very [00:35:00] constant. There's, there's sort of this like broad constellation of disabled people who experience these forms of isolation. I would also include people who have like post-viral conditions like long COVID.

There's so much isolation and there's this kind of divide within that too of like who can find community through all these technologically mediated ways and who can't. So, you know, it's like someone who, someone like me or perhaps like you or someone who's younger than us and is very on social media may have a certain kind of social life.

I grew up with the internet was invented when I was like 10. So it was like part of my life. But I also think of older disabled people, like many of the people who moved to Snowflake, like the work that, that they have had to do to stay connected is just, it's like, it's very intense. One [00:36:00] thing is that a lot of people there have, have to limit their computer use.

So they actually develop these like kind of shields and different contraptions so that like the actual computer or the wifi is like really far away. And then like some, some part of it gets fed into like a screen like inside or something like that. And there are engineers amongst them who have like helped build this.

Some people are able to be more online. So there's like one interview that I did with someone that we did it over Zoom, but others aren't. And so to go back to the isolation thing, like the editor of the EI Wellspring website, he, we did our interview and this is how we did it. So he writes with pencil and paper.

He puts it in like an envelope or something. A mail courier comes and picks it up. Someone else scans it and emails it to me. I read the email. I respond. [00:37:00] It, the mail, it like gets sent back to that email address. Someone prints it. Then they have to let it off gas outside for like three weeks and then he goes and reads it.

His life, the speed of time is really slow. And if I don't respond right away, if I take three weeks to respond, suddenly it's six weeks before he even gets to read it, you know? And so it's hard to say, are we in community? Because there are all these conditions that worsen isolation in some ways. They have, nevertheless, there's this like insistence on getting their stories out.

And so they actually created this whole amazing archive that is digitized, um, and they will send it to you on like a USB and you can read, you know, thousands of pages of newsletters and their like, you know, architectural plans and different products and like legal things and congressional things. So that impulse to [00:38:00] connect is there, even though it's...

What it ends up being is imperfect. It's not the same thing as like, "Oh, let's have a potluck in the backyard." You know? Like, like everything is like in slow motion. It's probably very hard to, um, tr- truly feel connected in ways that would be satisfying. And nevertheless, they've figured out these ways to be really effective, I think.

What do you make of the fact that community, communities like Snowflake, Arizona exist and it's because we can't access safe housing- Uh- ... safe medical care, safe public spaces? I have a lot of different feelings about it, and my, my answer is kind of informed by also, like, as a queer person, there's a long history of queer people creating rural living arrangements.

So where I used to live [00:39:00] in Tennessee, there are about 300 people who live on off-grid farms, and they, um, kind of live outside of, like, the demands of society, but it's safer for them to do that in some ways than to be in cities. And I think, like, there are disability communities that are like this, where people go off-grid.

My friend Corbett O'Toole considers herself part of what is called the nomad community, which is people who kind of drive around in, like, vans and RVs and live in different places at different times. There are a lot of disabled people in that community. Um, it is true that if cities were more accessible Perhaps people would not have to create these communities.

And I think a lot of marginalized people have created sort of like isolated communities or communes or whatever we wanna call them because they've had to. And sometimes that's where culture forms. It's an interesting thing about the history of [00:40:00] disability is like, you know, if you've ever, like, read about, like, the history of institutions or, like, seen a documentary like Crip Camp, these places where disabled people are sent to kind of be away from the non-disabled people are sometimes places where they create shared languages, like thinking about the evolution of ASL, um, shared resources and practices and protocols of living…

Aaron Goodman: Maybe we should just take a quick rewind. You know, there are roughly how many people who've moved there over, over decades, and it's because of their, you know, they're unable to live in physical spaces in what are standard, correct?

Aimi Hamraiue: Right. I don't actually know how many people have lived there over ti- But I know that people seemed to start moving there in the '90s. Um, and this is also kind of when the idea of MCS was also, like, becoming s- something that people were talking about more. Um- Mm ... it was not that long after the Americans with Disabilities Act was [00:41:00] passed, and so there were like, you know, it's like disability rights was becoming this thing that people could, like- claim in certain ways.

Um, and yet, like, people with MCS were both, like, see- like, seeing that and being like, "Oh, that's us," but then also being excluded from it. There are some people who started to move there from, like, California, like from the San Francisco Bay Area, um, who tried really hard to live in the city or had lived in the city, and then something happened, and then they developed MCS, and then they moved to Snowflake.

And then I think, like, over time, from what I understand, um, people would hear about this, and then they would move there, too. And then of course there are all the people who just, like, live in that town anyhow. It's right by the Navajo Nation, which is very interesting to me to just kind of think about, like, also the histories of the way that indigenous people have been relegated to certain lands, and those lands have [00:42:00] sometimes had, like, different kinds of horrible environmental things happen to them, like, you know, the, the use of nuclear weapons in the desert and things like that.

So there's, there's this, like, really interesting convergence of people who have been, uh, you know, pushed out of certain spaces- Yes ... into others, and they're, like, in the desert together. 

Aaron Goodman: Yes. And I understand the impulse to want to, to flee, as someone who lived, has lived with MCS for a long time. When workplaces are impossible, when public spaces, because that's what we're talking about, right?When public spaces are no longer accessible, well, where else can one go? If one cannot be where you are, it makes sense to want to flee. And I've talked to people on this podcast from Snowflake and others who have lived in RVs and vehicles. I spoke with a woman in Japan who had MCS, has MCS, lived in her vehicle for five years because her family [00:43:00] disowned her before taking her in again. Yeah. So what do you make of the fact that public spaces can be so hostile to people with MCS that we have to sometimes take those extreme measures and segregate ourselves entirely or find community outside of urban environments? 

Aimi Hamraie: I mean, I think it's like, it's, it's a thing that people do for survival, not necessarily because they want to.

It's very interesting to me that people figured this out. You know, like, the, maybe this is like a, a, maybe MCS is something about, like, modern life that didn't exist before the Industrial Revolution. I don't really know. Um, but the fact that, like, people have figured out there are these, uh, environments that can extend our lives or be more accessible.

But access is always so, there's like this ambivalence around it. You know? It's like not actually Maybe what we [00:44:00] would want. Mm-hmm. Um, but it's what we do to reduce harm. It's like a stopgap. It's, like, horrible that someone would be disowned by their family or lose their home or have to, like, live in isolation.

That's maybe not what that person would want. Um, public spaces also, I would say, like, are, despite their name, inaccessible to so many people for, for, like, so many different reasons. And d- even though we know that, there's such a sense of betrayal about, like, the choices that are made that make public spaces inaccessible to us.

Aaron Goodman: Where should the research go next to help reduce the barriers to our access to public spaces? 

Aimi Hamraie: That’s such a good question. I think that, you know, if there are people who are listening to this or reading the transcript who search on air quality or, like, you know, HVAC engineering or [00:45:00] something like that, it would be very, very useful if you could do research that could be translated into standards that can be adopted even as voluntary standards.

Because right now there seems to be the impression that the research doesn't exist or that it's too inconclusive. And so I think it would be really great for people to do some, like, public education and translational research about how it's not inconclusive, but also to think about how would you set standards and maybe test some standards out in the research.

I think that that would just go a long way towards what kinds of products get manufactured. Also, whether accessibility standards organizations are willing to entertain, um, that this is a type of standard that we can have. I think it's the same with, like, all of the chemicals that we breathe and that are exposed to.

We talked about, like, fragrances being harmful to people, the [00:46:00] carriers of those fragrances, and, like, all of the ways that they get into our bodies. I know that the research exists about these things, but for some reason there's an impression that it doesn't. So it's an opportunity for those researchers to do kind of more, like, public facing, maybe advocacy or translational research.

Aaron Goodman: Thank you so much. Aimi, would you like to add anything else? 

Aimi Hamraei: I’m really glad that you're making this podcast. I think it's amazing, and you've had so many incredible guests over time, and I think it's, it's just such a good way to leave evidence that we exist. I think about, like, my friend Alice Wong, who ran the Disability Visibility Project.

Like, what, part of what her project did was it left evidence of us so that people in the future could know that we're here, we have all these ideas. I see what you're doing as operating similarly, so I'm really- glad to know that it is here. And thank you so much for [00:47:00] having me on your podcast. 

Aaron Goodman: I’m really moved to hear you say that. Thank you so much. And thank you for being part of this conversation, Aimi. I look forward to sharing it with folks. 

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 Brachman Hoffman Foundation and listeners like you.

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