Episode 44: Contra* Environmental Illness and Remote Life with Susan Molloy

The podcast introductory segment is composed to evoke friction. It begins with the sound of an elevator crunching as it goes up. A robotic voice says “floor two.” Then music with a mysterious tone comes on. A series of voices define Contra. Layered voices say:

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Contra is friction… Contra is texture… Contra is questions…Nuanced…Collaborative…Contra* is world-changing…Contra is innovation, messy, solidarity, interdependence…Contra is thinking about design critically. Contra is a podcast.

 

Throughout, there are sounds of typing, texting and Zoom being opened. 

Then an electric guitar bass note fades into the sound of a digital call ringing and starting. The intro ends with the sound of a Facetime call ringing and then picked up.

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Susan Molloy:

If you’re a sick person, you just take your vitamins and go to bed. And give a lot of money to your doctors. And in my case, it just felt terrible. I don’t like to be a sick person. Being a disabled person made me feel a lot more ready for action.

Aimi Hamraie: 

Welcome back to the Contra* podcast. I’m your host, Aimi Hamraie. On this season of Contra* we’re drawing on the Remote Access Archive, a free online archive that documents how disabled people and communities have used technology for remote participation both during and before the ongoing COVID-19 pandemic. Today’s episode features an interview with Susan Molloy, environmental illness activist and a resident of Snowflake, Arizona, a rural, remote disability community. It was recorded by me, Aimi Hamraie, on March 21st 2023 via Zoom. Susan and I discuss how she came to live and engage in remote disability advocacy, the barriers that technologies presents and how her community invents new technologies to navigate these barriers in order to advocate for themselves and other people with environmental illness and chemical sensitivities. 

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Susan Molloy:

Sure. My name's Susan Molloy. I live in northeastern Arizona, just south of Navajo Nation. I’m 73 years old. And I'm white, I am female, and I usually say she/her, they/their.

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Aimi Hamraie:

And do you identify as a disabled person or a person with disabilities?

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Susan Molloy:

Yes.

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Aimi Hamraie:

Is there a particular terminology you prefer?

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Susan Molloy: 

Disabled person. I often specify what my barriers are, rather than my diagnosis, and that leads me to say I have chemical and electrical hypersensitivities. That means if I'm exposed to fill in the blank, your aftershave or your wheelchair battery charger, or your electric car, I won't be able to take care of myself, and I won't be able to help you either. 

So, if our relationship or our project is to move smoothly, this will be what I need. I’ll say I have asthma, which I do. I have a seizure disorder, which I do. I've celiac disease, which I do. And there are a whole lot of different things I can say other than saying “multiple chemical sensitivities.”

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Aimi Hamraie:

Yeah, that makes sense. Thank you for that. Do you consider yourself to be part of disability communities and disability culture?

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Susan Molloy:

Yes.

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Aimi Hamraie:

And would you say that you're part of communities of people who have similar or different access needs than you?

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Susan Molloy:

Similar, and different, and lots of people with whom my access needs overlap, where they might identify first as having a mobility impairment, but they also have terrific access problems with electronic and wifi equipment or fragrances or something like that. Also, there are quite a number of people who think of themselves as having environmental sensitivities of one kind or another, and then wind up with an orthopedic disability, needing mobility equipment, because they're given psychiatric drugs and they wind up with tardive dystonia and can't walk, can't speak. Or, they have environmental sensitivities, and they incur some other disability as a result.

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Aimi Hamraie:

And if I remember correctly, you live in community with other people who have similar access needs, right?

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Susan Molloy:

Yeah, I live outside Snowflake, Arizona, which is a small town along the eastern border by New Mexico. And a few years ago, in the late eighties, one person came here and built a house, and thought it wasn't too bad. And then I came –– I had no better idea. I was in the San Francisco Bay Area for a long time, and I couldn't do it anymore. So as soon as I got done with grad school and some projects on which I was working, I came down here just to see what it was like. And I was not interested in Arizona. I did not want to move to the Southwest. I wanted to stay in San Francisco, where I belonged, but when I got out of the car down here, I could stand up by myself. My speech cleared up a lot, and over the next few days I could take a few steps and think a little bit more clearly. I was dumbfounded.

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I thought, in San Francisco, I had been looking after environmental pollutants to the degree I could, and had been very careful, and done a lot with not much to make my environment accessible and safe. Once I got down here, I realized I hadn't scratched the surface. I was surprised, and I was very disappointed. Because I didn't want to move here, and since that time I've adjusted fairly well. There have been dozens of people who've come here either to buy land and build houses or camp for a few days. There are people who’ve come here, and they get out of their vehicle and take one look around and get right back in and get going again, because it's so different than any of the places that, well, certainly I and quite a number of other people have ever lived.

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Right now, I think, last time I counted, I think there were forty-one people who are disabled with diagnoses including chemical and/or electrical sensitivities living here, and there have been a lot of other people through here during the years. Some left because they got well, some left because they were tired of it.

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Aimi Hamraie:

It's quite a sizeable community, is there a name for your community, or is it Snowflake?

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Susan Molloy:

We just say our neighborhood is outside of Snowflake. I try to limit use of the word “community” in describing who we are and why we're here. I think community overstates the degree to which we have figured out how to be here. Community sounds as though there's coherent leadership and planning, and maybe zoning and home care and that we make meals together. And it isn't like that. We've moved as households to this area, or some individual people. We moved here, and we know where the other folks live, and we can call on them if they specialize in whatever endeavor, or if we need a ride, or if it's snowing too much, or if our power is out, or if there's some kind of pollutant coming this way. Some of the people are extremely isolated, and might not be able to get to the phone at all, or don't have computers –– I mean, they can't have any electronics. In that case, it takes driving a half mile from their house and running up with a note. But most of us know each other.

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Aimi Hamraie:

Wow, okay, that's a really helpful distinction. So you're more neighbors, like, you live nearby, but you're not trying to create a separate test society with its own government structure or anything like that. 

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Susan Molloy:

Yeah. Even though sometimes that's tempting, it's not what we're set up to do. We don’t have the right frame of mind to organize anything that thoroughly. And it takes a degree of cooperation we can’t come up with to figure out how to sucede from the town, how to get things zoned the way we need them, that’s for the next generation to do.

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Aimi Hamraie:

Yeah, that makes a lot of sense. 

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[Long, low twanging chords]

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So I want us to talk about, given your experiences, the period of time, however long, before the COVID-19 pandemic started in the US. So before March of 2020, what were some of your experiences with remote participation, and that can include all sorts of things: It could be Zoom, it could be telephone, letters; I don't know if you ever took a correspondence course, really anything like that. Given where you live, and navigating access needs, what are some of the types of remote access you have used?

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Susan Molloy:

In 1981, I was completely sickened and disabled with this illness. After a few months I realized there were a few more people kind of like me in the San Francisco Bay Area, and lo and behold, they had a small newsletter. So I subscribed to that, and was wildly encouraged for a year. And then I realized that in my case, anyway, this is not just a sickness. It's a disability and my primary interest was in getting access for us. I wanted us to see ourselves as disabled persons with access needs that we could work on rather than sick people. If you're sick person, you just take vitamins and go to bed, give a lot of money to your doctor. In my case, it just felt terrible. 

I don't like to be a sick person, being a disabled person makes me feel a lot more ready for action. So, that meant I had to start a newsletter myself, and reach out to people in the United States or Canada, or wherever who had this illness. It was all word of mouth, we just communicated with each other, some by telephone, or by pencil and paper letters. There was absolutely no capacity for computer work at that point. Some of the people couldn't get near a phone. So we did a lot of writing by hand on paper with pencils. I started a newsletter called The Reactor, and I edited that for twelve years in the Bay Area. I did that to get focused on disability laws and accessibility, like, what do we want to call what we need? It has elements of many kinds of access issues. But is there something separate we can call ourselves to get some headway here? 

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There were 200 people on the mailing list nationally, and we were so excited to meet each other, we were gleeful. Sick but gleeful, more hopeful. We worked as a support group for a long, long time. Eventually I was able to move back to the Bay Area from the country, and get to work with support group issues and political inroads and things like that. It provided so much strength to me that just because I didn't know how to do the project at hand, didn't mean I didn't have to go do it, anyway. I figure I've tried so many projects and so many efforts, in so many contexts, and fallen on my face so many times that, you know, sometimes I don't even take it personally anymore. I just expect these terrible odds, and my expectations usually come true. 

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But I do keep working on it. After I moved down here to the desert, I was able to take a more active role in some of the state agencies’ work here, and as of 2000, lots of websites and chat groups and Facebooks and things like that. So, people who were computer literate and could get near one, could have the opportunity to communicate without me and the newsletter in the middle. So I decided, “Wow, the parts that I can do in that regard are pretty much covered now,” because the next generation of people has absolutely nailed it in communications. And that was such a relief, to realize somebody could do it way better than I could. That was wonderful. I think that was maybe the most important remote communications effort that I got to help with was that newsletter, and we didn't talk about things in the newsletter, like, “where can you get organic carrots?” Or, “where can I get a blouse that doesn't smell like perfume,” or things like that. It was more like, “which state governments are doing anything to recognize us as deserving of civil rights and access,” or “what agency can you approach to get funding and guidelines for housing”. It just seems to me so much more worthwhile, and I think, pardon the expression, I think the capitalism had addressed quite a few of the needs for consumer goods by that point. And the medical profession had discovered “wellness,” which I’ve got to admit, I find that pretty irritating.

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Aimi Hamraie:

What's irritating about it?

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Susan Molloy:

Oh, “if I were really well, I wouldn't be thinking about medical assistance.” I think it's pretentious for medical professionals to not come to grips with sickness and illness and deficits and deficiencies and financial barriers, and all the things that can go wrong in the US medically. To try to change the focus to “wellness?” Who gets to go to a wellness practitioner anyway? People with smokin’ hot insurance or a lot of resources. That's not why we go to the doctor. We go because we absolutely can't think of another way, something gravely wrong has happened.

I was in grad school for five years in San Francisco, and not having computer access was really hard. Eventually, I learned how to type short assignments. I wasn't fluent at all. I couldn't do email, you know, it was like, run up to the computer and type in a few words and then get back and think some more. It was very inconvenient. The electrical sensitivities started in ‘81, same time as the chemical sensitivities and the food problems. I think I got sensitized to the whole thing at once. That was when life changed. We didn't have computers, most of us, until well after 2000. I think that impacted our growth as people with a disability in common. After that, things picked up a little bit, the newsletters really had a sharp focus. 

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[Low, twanging chords]

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Since I became a little bit more at ease using a computer because they didn't hurt so bad, I've been able to do an awful lot more work with other people more. And that happened because the person who I had moved in with, here outside of Snowflake was an engineer who was profoundly disabled, and had some savvy about shielding electronic things. Out of metals, he built a box to fit around my computer with glass for the screen that would protect me. It was a metal/glass combination, and it allowed me to get in the same room with a computer. The modem has been set up in a different room, and it has its own cubbyhole in in the laundry, and it's lined with metal. If we take the lid off that for someone to do an adjustment to the modem, I have to get out of the house. But with a lot of hassle and a few purchases at the hardware store, we’ve been able to keep me working on a computer. I’m very grateful. And as people have moved into the neighborhood here, he's helped quite a number of us be able to use telephones and computers, and a number of other devices, which, you know is a lifesaver.

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Aimi Hamraie:

Yeah, that's amazing.

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Susan Molloy:

Now that people have Zoom, there are some fabulous upsides to that, and some devastating downsides. The people who are just say, on the Housing Committee for National Council on Independent Living, use Zoom and sometimes phone to hook up to the meetings. And, of course, written work. But it means that people who can only use a pencil and paper some of the time, or hire clerical help to do it for them, have a real tough time taking part in that work. We have a protocol in NCIL that if you have someone who could not be around electronics or computers in your group, you will send them the minutes as soon as possible and phone numbers so they can ask people questions about “why did you do this, why don't we do that,” so we try. Sometimes we can try to fill in those blanks. It's not efficient. It's not effective. And I don't like it.

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And the only thing I know to do instead that works for me personally is to get there. I hate this remote participation stuff. I can't get anything across to people that we need on Zoom or a telephone, or by letter. I really wanna get there. And I want us to have a real talk.

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Aimi Hamraie:

And is it possible for you to get there, or accessible?

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Susan Molloy:

Yeah, yeah, I do when I can. But at some point during COVID there was no way to go join in to something, even if it was a 100 miles away, let alone the meetings in DC, or far away places where I needed to be. That really bothered me, and I'm so relieved now that we've gone back to sort of a half-and-half deal. So if it's appropriate to do something by Zoom, I can, and write a letter and, gosh darn it, get there in person if it is looking like we're not getting any movement. Because I know I can encourage people to see other ways of doing things in a personal meeting. 

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And for some people, Zoom makes all the difference between whether they can participate in a social and political life or not. They have to have it. I'm so grateful that there's some options, now. I'm terribly resentful of the companies that make the electronic technology, that they have not taken responsibility for shielding their products and their devices at the factory. To do what Bruce did for me, and customize the computer shielding. You know, nobody can afford to have that done. Nobody has an engineer as their next door neighbor, or their best friend. Probably a few people, but it’s not an answer. It would be so simple for any of the big companies, to say “Jeez, we sure have been hearing a lot about people with electrical hypersensitivities and wifi problems, and they can't have smart meters, and can’t be next to cell towers. Maybe we could stick something on our computers that would make them not hurt so bad.” Why they haven't done that… I can't think of any reason that they haven't done that, that wouldn't fall somewhere under the category of criminal negligence.

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Aimi Hamraie:

Interesting. And so, if they were to do that, what are some of the differences that it would make in your life in terms of your ability to get around and participate in things?

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Susan Molloy:

It would mean I could work in an office, or I might be able to have a job again and be able to go in and out of other people's workplaces and meetings, and things like that, if their stuff were shielded. As it is now there's always a discussion. When I go to the counseling center, my counselor can't meet with me outdoors, because she has to stay inside with her computer on. Likewise, with all government agencies and most private businesses. It’s just - my doctor. It's real hard to get people to step outside and leave their computer inside. So, I would like their computers to be shielded some way, so I can go in their darn offices and be a person with civil rights.

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I very definitely want fluorescent lights off. Nothing with a ballast, the EMFs are killing us, and for many of us with seizure disorders, the flicker is just murder. There are quite a number of instruments and technologies like that, that were they modified just a bit, would permit us access to our society. I absolutely want you, or any Zoom-dependent person, to be able to communicate with me, and I appreciate it so much. I can hardly tell you. It's really great. And, what would we do if I couldn't get in the same room with the computer? You'd miss hearing what that's like.

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Aimi Hamraie:

Yeah, that’s true. 

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[Long, low twanging chords]

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I wonder if you could say a little bit about the design of the spaces that you live in, and how that has enabled you to live accessibly, and also to participate remotely. Is there something specific about your home?

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Susan Molloy:

I think it’s interesting…cell phones are very hard for many of us to be around, and they could be fixed by whoever is making cell phones. That could be addressed and fixed; it wouldn't kill them, you know? They’d need a room full of grad students.

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Although, living way out here in the desert, quite a number of people don't have any possibility of hooking up to a landline, because landlines don’t exist. So one of the workarounds is that people will get a cell phone and put it in a container of some kind over the hill from where they live, where it's not going to affect them much if it's hundreds of feet away, and they'll run a fiber optic to their house, and wiring, so they can use the cell connection to the sky or the cell tower for that purpose, and then have plain old fashioned wiring go into their house. So they're protected that way.

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The kinds of houses that have been developed around here. Started small, like, for example, mine. Mine is about 700 square feet and a porch, and that includes the laundry room and the bathroom and the kitchen and living room and bedroom, which are all one room. Small houses are in use here primarily. And they’re all one storey. They’re are all flat, because I want wheelchair access to any of these houses. I don't want someone to move here with environmental sensitivities and break their legs skiing, or their MS gets worse, or whatever, and they can't use their house anymore. And if you're chemically sensitive, the last darn thing you want is home repair or renovation when you’re sick. 

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So we do wheelchair accessible places here, and grab bars. There are no smart meters in our neighborhood. We got an opt-out from the power company. We don't have smart features in our houses, like the smart devices so they can sit in an armchair and turn off and on their oven, for example, or turn on the water in the yard. We just don't do that.

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Aimi Hamraie:

Because it would require a wifi signal?

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Susan Molloy:

Yes. 

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Aimi Hamraie:

Gotcha.

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Susan Molloy:

If a person’s primary impediment to doing household chores is their mobility, then I would expect them to do something with smart features. But for us, if we keep out of the line of fire, we can usually operate those things the way they were done in the eighties, and that's how we prefer to get our houses organized.

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I have aluminum foil wallpaper, which makes the building department inspectors really curious. When they've come over, they've said, “when are you going to finish your house?” You know, not understanding that this is kind of like wallpaper for me, and we're not going to paint. So it's culturally odd and something to get used to. We have metal clad on most of our houses outside, that's for several reasons. The first one that we realized was, we don't want to paint our houses with exterior paint, in which case we might have to leave home for an extended period. So we found this kind of metal, propanel, and different exterior wall materials like that, that have their paint finished and baked on at the factory, so we can put it up, and we don't have to mess with it again, ever. That was a relief to find out. Also, the metal on the outside of the building, if you know how to use it properly, can be a shielding material for certain wifi. You can also just go yourself into a building with metal all over the outside, and injure yourself by being trapped with all the electromagnetic field-producing items. So you don't want to do that if you're going to be in a house shielded thoroughly that way, you want your stuff turned off.

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We have metal roofs, for the same reason. We didn't want to have to replace the roof with shingles. And then later, we realized that they can shield for certain purposes, EMFs, and I don't know, maybe satellites? All of our electrical wiring is twisted pairs in metal conduit. Most of the houses after mine –– actually all the houses after mine –– have used tile on the floors, gorgeous, just gorgeous tile work. And they have heat under the floor that's run either by a gas heater outside, in its own little house, downwind from their place, so they don't get impacted by the gas. So there's hot water running through their floor, and it makes the most lovely heat. I have a couple of electric heaters and lots of hiking boots and several sleeping bags and things and a small warm dog, so I have those for heat most of the time!  

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People have invented quite a number of different kinds of plasters to use over their foil, so they don't have to look at foil. I find kind of snobby actually. But if they can't live in foil, they can’t live in foil. I understand on one level. You hear people move here who are desperately ill. Nonetheless, they'll say, “I have to live in this house the rest of my life, so I'm gonna make it really big and really beautiful, and the colors I want. And it's gonna have this, that, and the other feature.” And, you know, makes me hold my head in my hands, thinking, “no, God willing, you're going to get better and get out of here, or you won't really get better, but you learn to like it here, and it's just to a different standard of living that is accessible. Or you can't sell your house for what you've put into it.” So I don't encourage people to build lavish houses. Nonetheless, despite me, there are quite a number of different kinds, plaster and wall coatings. Sometimes some people have tile on their floor, their walls, and their ceiling. 

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[Long, low twanging chords]

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We can still get sick if somebody is using, you know, fabric softeners, and drier sheets, and things like that, and the wind comes right at us. That usually doesn't happen.

There’s a commercial hog farm, maybe 25 miles from here. Once and a while, the fumes from the livestock can come this way. There are controlled burns in the mountains here on the reservations, and some national forests, that smoke comes at us. So we've all done what we can to keep the air as good as possible in our own houses, to be able to seal them up for those occasions. That makes for some interesting architectural features and developments.

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Aimi Hamraie:

It sounds like you have been doing social distancing since long before the pandemic started.

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Susan Molloy:

That’s a really good way to put it!

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Aimi Hamraie:

And air quality, sealing your homes like all of these things that you know, I remember in the Bay Area, when the fires and the pandemic were happening at the same time and people are using what they have learned from, you know, keeping out the smoke from the fires to also filter the air for COVID, for the vaccines and stuff. 

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Susan Molloy: 

That’s a really good way to put it! They’re complementary skills. Keeping the air out of your face is similar, regardless of the attack, at least to some degree. 

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Aimi Hamraie:

What are some of the ways that things have changed in your life since the pandemic has started, in terms of access needs? Have you had to change the way that you live? What's been going on for you on that?

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Susan Molloy:

I haven't been able to go to meetings in-person, and I always treasure that, even though I'd get beat up by the drive and being in the building, it always mattered to me to get there in person and be with the people I'm working with, so COVID made that no longer possible. Several friends took turns trying to teach me to use Zoom, and we finally got it. So there was a little bit of progress on communicating. That meant a lot more contact with people I otherwise wouldn't have gotten to meet, like people in far-flung parts of Europe and Mexico and all over to work with on things, and also quite a number of professional people I'd never have had contact with otherwise. They're just working in a strata that I didn't even know existed. It never would have occurred to them to call me and ask me, did I want to go learn from them? But I do, and you can do that a little bit with Zoom.

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Aimi Hamraie:

Like what kinds of people? In terms of your advocacy work?

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Susan Molloy:

Lawyers, Agency directors, hospital administrators, scientists, people who would have never given me a time of day, and I couldn't have gotten into their office, not with a crowbar. When they're having a big Zoom meeting and lots of people attend, I can see what they look like, and what they sound like, and a little bit about their office or what they’re reading and how they conduct themselves. Things like that. It gives me a little bit of insight about how to work with them if I need to. Or, how to not work with them if I can tell they're not friend material. So it's just changed a lot of things for me in terms of making relationships much more doable and much better, Zoom has.

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At the same time, I don't get to spend as much time on the computer as I want to, or need to, and since I got sick when I did, I never learned computer skills. I was too sick to go to community college and take a class or to hire a tutor, or to be, you know, anywhere around a computer for so many years. So I missed the whole deal, you know, it's like everybody that gets disabled misses the next ten years of movies and TV shows. It's like you took time out to try to learn simple things again. At any rate, I'm missing the 80s and a lot of the 90s in terms of learning, and I wish I could get that back.

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Aimi Hamraie:

That's so interesting. Part of what is interesting to me about this is that there's a lot of ambivalence, you know. It's like, computers enable us to do certain things. They also get a lot harder, sometimes more dangerous, to do other things. In the 80s in Berkeley, there was a whole group of disabled children, who, with their parents, worked with Microsoft, and developed a lot of computer technology, but it was kind of really based in education for children and stuff. That's part of disability history. And also, your story is part of disability history. You're having opposite experiences at the same time.

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Susan Molloy:

Sometimes I think, “oh, my God, if we were only grade school kid-aged people with parents who would go to bat for us,” or I don't know… just, the opportunist in me thinks of all kinds of reasons why, if we weren't us, if we weren't ourselves, we could get our needs met by sending in some parents! But it’s not an option once you reach your elderly years. In some ways I resent that the disability movement has had to use children to go in to do exercises. Using their youth and their innocence and their sweetness. It's unfortunate, and I also understand why attorneys have to do that. And lobbyists, you know, to sell whatever their position is. But it's something I think about a lot. 

Aimi Hamraie:

I want to just follow up a little bit. You said when you were in the San Francisco Bay area, it sounds like there was already a newsletter, possibly for people who had multiple chemical sensitivities. And then later, you also created a newsletter called The Reactor. Is that right?

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Susan Molloy:

Yes, there was one called the Environmental Illness Association in San Francisco, a support group that was a couple of years old, of people who met together in the hospital once a month and discussed personal things.

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Aimi Hamraie:

I see.

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Susan Molloy:

You know, food, clothing, whatever. And I was so glad to meet them, and then I was so disappointed that nobody else wanted to go to City Hall.

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Aimi Hamraie:

Gotcha, your newsletter was about advocacy, and theirs was more like everyday life things you were talking about.

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Susan Molloy:

Yeah, really critical lifestyle issues. It's just wasn't how I saw us getting ahead.

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Aimi Hamraie:

Do you by any chance still have copies of those newsletters?

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Susan Molloy:

Of course. Yeah, I have a substantial shed in the yard that is floor-to-ceiling Sterilite, weather-resistant boxes with newsletters in them from all over the country, and some from Europe and Canada, and so forth. I kept them all since 1980 or so. They've been so precious to me. They’re from when we were completely alone. Completely alone.

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Aimi Hamraie:

Wow.

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Susan Molloy:

I kept them all, because I thought “someday somebody's gonna give a dang about this stuff.” Most of us, once we've reached 58, early 60s, we realize “I could die any minute.” Your power can be taken away, and someone will clean up my stuff, and they're gonna burn all my documents, or take them all to the dump. Every one of us that lived through those years either had to get rid of all our stuff early on because of mold and not having a place to live, or those of us who kept them have these boxes that no one else in the world would ever appreciate. But I do! So, one of my neighbors and I decided a couple of years ago that we needed to do archives. We've scanned almost all of them now. 

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Aimi Hamraie:

Oh, wow.

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Susan Molloy:

I guess the early, early ones were maybe 1979, and they go up to the year 2000, and in some cases much farther than that. At any rate, there are hundreds and hundreds of these. And it's kind of like having pets. Even though it's nuts to have them all, you can't just burn them. They mean too much to me to do that, so we're archiving them. I’d like, somehow, before I get out of this body, I'd like them to have a good home, to do them in a modern way, so that if someone sends five bucks, we can send them a thumb drive with all this stuff on it. And if they're doing, say research on odd disabilities during the eighties, they can have them all and not have to search through more things.

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I have a lot of things from dead friends that I'm really honored to have: some of their papers and documents and things. We also wound up with several hundred, or thousands, thousands of pages of scientific documents, and some real hard campaigning literature that the tobacco industry did, and the carpet industry, for example, when they were saying that they can't possibly be hurting anybody. We got lots of article like that too. So many of the articles in our newsletters were written by friends who are dead. They reflect the parts of my life, and our lives, that matter to me the very most of all, like no one was, keep working anyway. It's really been kind of a group effort. 

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Aimi Hamraie:

Yeah, that makes sense. It's make sense to have all of those in there. And I'm guessing you also have The Reactor archived in there.

Susan Molloy:

Oh, yeah, sure, yeah, you bet. I thought of another thought. Everyone in the neighborhood here who goes out –– which is, of course, not everyone, but maybe half of us do leave home and go to stores, or something –– we used to feel a lot more conspicuous with our masks on and our hair tied back and clothes that cover our whole bodies and so forth. We were pretty conspicuous in our public presentation. After people got COVID, everybody's got a mask on, and it started to be okay to say, “no, I'm sorry, I can't go to the doctor's office, because I just don't want to get COVID. I live with an old person. I live with babies.” There's certain things for which we were given allowances because of COVID. We could hide, you know. We could blend in, and passed.

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Aimi Hamraie:

Yeah, so you were masking prior to COVID, too. 

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Susan Molloy:

Oh gosh, yes.

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Aimi Hamraie:

I'm really curious to hear about that, and how it let you go into different kinds of spaces like, were you buying N-95 masks or surgical masks, or making your own?

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Susan Molloy:

Some of each. So I use an industrial respirator if I have to go someplace treacherous. I don't know. I just thought of something. It’s just been interesting to watch the response to even masking and social distancing. Just simple things like that have become so much more acceptable now, and one of the things I find bizarre about it is that before COVID, if I wore a mask in public, people might look at me a little bit, you know, thinking, “gee, what's that about?” During COVID everybody's got a mask on. Nobody thought twice about it. Now, I'm starting to feel more conspicuous again, and given the way politics and COVID have all blended together, and you know, sort of take on a life of their own, it seems like now, if somebody here wears a mask, you're not suspected of being sick as much as you're suspected of being a Democrat. You know what I mean?

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Aimi Hamraie:

Right, yeah, I know what you mean. Similar experience here. It's almost like you're making a political statement. And the assumption is that COVID is over, and so you're wearing a mask for no reason. It’s very interesting. And you know, I remember, and I wonder if you have memories like this, too, of learning about high-quality masking from other people like me, who have fragrance sensitivities, before the pandemic. I had a stash of masks already when the pandemic started. I had ones that have removable filters, different things like that. And so it was one of those ways that disability knowledge like enabled us to navigate. Did you have any experience like that?

Susan Molloy:

Sure, sure! There were certain things that we knew and did, and took for granted. You know, you come home from the store from visiting a friend in the hospital, or something, and you wash right now. All those kinds of things. 

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[Long, low, twanging tones]

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Aimi Hamraie:

Well, is there anything that we haven't covered yet that you wanna make sure to share?

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Susan Molloy:

We could talk about having built the two housing projects.There's one in San Rafael, California, called Ecology House, and we started off with sort of a quiet bang. And then, many years later, the suburbs, and the freeway encroached upon it, and it's by no means as safe anymore as what people really need. We did the best we could in the beginning, but it's deteriorated due to management. 

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We have another housing project here outside Snowflake, that has four rental houses and a laundry room. It's managed by a nonprofit group that is not paying much attention, called Old Concho Community Assistance Center, and I don't know what their interest is in us. I don't think there is much, except maybe building their portfolio of properties. It was another situation where we had to get Federal and State money, and convince people with real jobs that “we need this so we are going to do it, so you want to help and make it happen?” So those are the only fifteen apartments for low-income rental units, for low-income people in the US that I know of, where we've gotten Federal and State support, and there are a lot of lessons there. A lot of things we could have done differently. But that's something that I think is an interesting part of our lives.

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Aimi Hamraie:

I want to thank you so much, Susan, for this conversation. This is amazing, and I'm so grateful for your time and everything that you're doing and everything that you shared.

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[rippling music and rhythmic pops underneath]

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Aimi Hamraie:

You’ve been listening to Contra*, a podcast about disability, design justice and the lifeworld. Contra* is a production of the Critical Design Lab. This season’s episodes draw on our recent project the Remote Access Archive, created by a team of disabled researchers collaborating remotely. Learn more about our projects, including the Remote Access Archive at www.criticaldesignlab.com. 

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If you enjoyed this episode, please subscribe on Spotify. Rate and leave a review. 

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This season of Contra* is edited by Ilana Nevins. Kelsie Acton and Aimi Hamraie developed the episodes.

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The Contra* podcast is licensed under a Creative Commons attribution, non-commercial, share alike international 3.0 license. That means you can remix, repost or recycle any of the content as long as you cite the original source, you aren’t making money, you don’t change the credits and you share it under the same license.

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[Music fades out]

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