...we all got sick

Descriptive Caption: View onto a room with beige-yellow walls, purple chairs in a row, a round clock on the wall, water cooler, trash can, two plants. There are magazine racks hanging on the room’s left and right walls filled with publications. A white column emerges out of the seat of one of the chairs.

A conversation with curator and educator Taraneh Fazeli about Canaries, a support group that has also operated as an art collective, with questions by Feminist Health Care Research Group.

In 2018, Taraneh Fazeli invited Feminist Health Care Research Group to produce its sixth zine in the frame of her traveling group art exhibition that deals with the politics of health and care, Sick Time, Sleepy Time, Crip Time: Against Capitalism’s Temporal Bullying¹. Zine #6 included a conversation between Fazeli and Inga Zimprich and Julia Bonn from FHCRG, in which they shared about their respective experiences as members of two collectives situated in the field of art and culture that deals with the politics of sickness and healthcare. They specifically addressed how difference figures into working dynamics of such care-focused groups. Portions from that original conversation from 2017 focusing specifically on Canaries were transcribed, excerpted and printed in Zine #6. What follows is a shortened and edited version for RTV magazine.

Taraneh Fazeli: We say Canaries is a network of art-adjacent women and gender non-conforming people living and working with auto-immune conditions and other chronic illnesses. We circled around this statement many times. The group’s identity seems particularly important because of how these diseases have been gendered by being wrapped in discourses of hysteria and hypochondria. Auto-immune diseases are talked about as the body literally attacking itself. There are different types: some effect the endocrine system (like Hashimoto’s), there are the gastrointestinal ones (like Crohn’s), and then there are the ones that effect the rheumatoid system (like Lupus).

The group’s name references the phrase “canaries in the coal mine”—referring to the birds that were sent into coal mines to check oxygen levels for the human laborers. So this title is shorthand for those whose sensitivities are early indicators of adverse conditions in the environment that affect us all. Canaries functions as a support group with a listserv of 150+ members for sharing confidential advice and support on surviving in and outside of medical institutions, and, previously, an art collective.

Taraneh Fazeli: Jesse Cohen, Carolyn Lazard, and Bonnie Swencionis are the main co-founders. There are different stories about how Canaries emerged, which differ depending on how the person telling them came to the group. I wish Jesse had been able to join us on this call, as she really was the originator and, in my mind, remains the keystone of the support group. I only joined a year or two after it got going, and I was mostly living out of NYC by then. But it was hugely important to me as I went through a flare to an extent I had not experienced since I was quite ill as a youth, and this changed the way I was living as a closeted chronically-ill person up until that point. The group allowed me to find community in my search for relief, and also politicized my experience with illness.

I think the group was really born out of the dire need of people who had friends in common, largely women, who were going through similar frustrating experiences of trying to negotiate their chronic mysterious health issues within the American bureaucratic health system. It was really informal and simply looked like friends saying to Jesse: “Oh, you should talk to so-and-so… You have these similar reactions going on and they don’t really know who to talk to or what exactly to do about it….“ So it started by Jesse having tea with different people and just talking. There were these moments of connection. You might not talk about this weird thing going on with people you aren’t sure will understand, allow yourself to be vulnerable like that. Particularly in the arts, which, in recent years, so emphasizes criticism and critical theory as a lens to understand personal experience. So, finally, there was space to share those things. Jesse started holding gatherings in New York City in her family’s kitchen. That’s how the monthly support group meetings started, in person. And a loose email listserv emerged. Canaries evolved into an art collective a little bit later. At its core was carving out spaces to talk about what was going on in each other’s lives and bodies that we didn’t have elsewhere. It was really about resource-sharing through telling personal stories. The motto at the start was: “First order of business, be together.” Very old-school, you know, a feminist processing space in the face of the patriarchal and exclusionary medical system.

Taraneh Fazeli: The support group meetings moved to Skype or phone as members gradually had to leave the city for various reasons. It had a lot to do with our conditions. We couldn’t do all the work that’s needed to live in New York City, which is quite expensive and requires you to work many jobs/hours. Due to some of the effects of these particular diseases—chronic fatigue, multiple chemical sensitivity, environmental allergies—an urban environment was particularly challenging for many. Increasingly more and more members who used to be in there left and, also, people we knew through our social networks that were not based in NYC wanted to join. Many times the in-person support group meetings would take place with half the people joining in through Skype, appearing as little heads on the screen.

Currently the listserv is the most active part of the group. At first the listserv functioned really organically and it wasn’t really moderated. There were different approaches to how people participated. Some people would just listen for a while, not really ever say anything until they had an urgent need. Others were frequent posters, asking questions but also chiming in with resources and their own stories. Some people would write an introductory email when they joined. A lot of times we have the same questions coming up again and again. Sometimes we recycle/re-circulate threads. One issue I’ve emailed about a number of times is chemical sensitivities: What do you do in a taxi when the driver is drenched in cologne? How do you handle the enclosed spaces in airplanes? What kind of masks work best and how do you handle the potential embarrassment of wearing one? So very functional things come up. One other example would be how you handle a particular medicine in conjunction with other medicines. Or there’s the request for the recommendation of doctors that handle certain issues and have a certain approach. Or advice on how to decipher what doctors are recommending as treatment. Like: “My doctor said this, what do you think based on your experience with similar conditions and meds?” One thing that comes up again and again, particularly in the US context now, is how to navigate the health care bureaucracy by asking, for instance, what doctors take a specific insurance or how to hack the system to get what you need.

There has recently been some tension and subsequent shifts in the group, which manifested partially on the listserv but mostly in the now defunt art collective. As I mentioned, early on the listserv had not been moderated, it was more run with the thinking that once someone was invited in they would just share resources and it was quite small at first. Relatedly, the collaborative art project, Refuge in the Means, which Canaries realized in Autumn of 2016, happened right after the summer that Black Lives Matter got mass attention and attendant conversations came up about the class and racial makeup of Canaries. We started to address whose health was being supported by group activities and how its reach might expand to those more vulnerable in US-American society without loosing the focus around certain ailments and our ability to support each other from our own positions. As I understand it, a majority of the people who showed up in the group early on were white cis-women (it is hard to tell on a semi-anonymous listserv though). So, as there was an awareness of questions of access and support more broadly in our society, increasingly these issues came up within the group. There were questions as to who felt included and, therefore, who would want to join. Sometimes people would write emails saying: “Hey ladies!” when not all of the people in the group identify as women. Or when people would make recommendations, it would be for the most expensive private health care in New York. That meant it was not addressing a lot of people in the group, say, like me, who didn’t have any insurance, or who had Medicaid (which is a quite limited form of public healthcare in the US). Therefore, the advice given was pre-figurative as to who could feel welcome in the group.

Descriptive Caption: A small brown wooden side table, next to a purple chair, covered with waiting room magazines, pamphlets, and brochures. A small plastic placard with black text on white paper instructs visitors on reading and returning publications.

Taraneh Fazeli: Alongside the meetings and listserv, an art collective was emerging. A bunch of Canaries members had done a group show comprised of individual works at Cleopatra’s in Brooklyn. Shortly after there had been an installation at Franklin Street Works created by Carolyn and Jesse with input from the larger group on an embodiment ‘zine. After that, we realized Refuge in the Means at Recess in New York. Recess is an art residency centered around public engagement. The idea is that, from the minute you get the keys to the storefront space, you’re supposed to do your work in dialogue with the public in some way. Refuge in the Meanstook the form of a care center. Seven Canaries—a core group at the time—did this project together. Working together as a collective on an art project was really different than previous collaborations. We found we were all so excited to have some resources, time, and space physically together that we over-programmed. We wanted to investigate all these topics with each other that we’d never been able to in such depth before, and also share our resources with a broader community beyond the core group of Canaries. This made us really ambitious. And, I might argue, it made us ignore the material conditions of working on crip time² and, more so, simply being together in it.

In the proposal for the care center we anticipated the very real possibility that many of us would fall ill while working together. It is just part of the terrain of living and working with chronic illness. So we suggested that when, for example, one member of the group would become unavailable because of a health-related issue, then another member would shift to fill in for that person, and, if/when that member became ill too, then another Canaries member would step in, and so on…. We even planned to map the structures of interaction that define our collective organizing in a drawing of some kind that would visualize the interdependence that shaped the basis of the group’s day-to-day labor. But, while we were doing the project, this did not happen. Because we all got sick.

I think that part of the difficulty we experienced is that the collective was more of a support group and not a working collective prior, so we did not have to negotiate structures for working together on a collective project in the ableist art world before at this scale. The systems of accountability that were at play in the listserv—where, if someone writes, people respond at will depending on if they can speak to the question from their own experience, if they have the spoons³ (unit of energy), etc.—did not translate to this structure.

Taraneh Fazeli: One art project we worked on together was the Notes for the Waiting Room publication during the first Sick Time, Sleepy Time, Crip Time show I curated. In some way probably text wasn’t the best form to choose for a Canaries project. Text can feel really overwhelming when you’re not well and having associated moments of brain fuzz. And also, that level of production was something that Canaries had not done together before. Furthermore, due to the ebb and flow of illness, the duration of this project expanded and it became hard to finish it. It isn’t always easy to renegotiate commitments made to work and each other while also practicing self-care, but obviously that is where the real work lies.

In Refuge in the Means, we realized that some people had affinities and worked really well together. But some of us didn’t work well together at all. For me, this brought up the question, when you are not jiving with collaborators, how do you determine when it is because you just don’t work well together or if the difficulties are a result of inter-subjective differences and important struggles to work through? This relates to the conversations I had with you on Mia Mingus’s idea of access intimacy⁴ and how care sometimes occurs across difference despite needs being intuited without a political understanding of disabilty or another’s experiences.

We haven’t quite worked through all those dynamics that surfaced. It raised questions as to what we were doing as a group—how we were good at supporting each other and where we still had a lot of work to do to figure it out. Then we came to the realization that we were not going to work together anymore as an art collective. For the time being at least. Instead we would privilege the care commons and, I at least, focused on trying to share that with a greater breadth of people. And there are, maybe, smaller art collaborations that are emerging now from Canaries. But it is primarily functioning as a mutual aid network at the moment. This is where we are at.

¹ The travelling group exhibition „Sick Time, Sleepy Time, Crip Time: Against Capitalism’s Temporal Bullying“  has taken place at arts organizations across the US including: Red Bull Arts Detroit in Detroit, Michigan (http://redbullarts.com/detroit/exhibition/sick-time-sleepy-time-crip-time-against-capitalisms-temporal-bullying/);  The Luminary in St. Louis, Missouri(https://theluminaryarts.com/exhibitions/sick-time); Bemis Center for Contemporary Arts in Omaha, Nebraska (https://www.bemiscenter.org/art/exhibitions/sick-time-sleepy-time-crip-time-against-capitalisms-temporal-bullying.html); The Elizabeth Foundation Project Space in New York (https://www.projectspace-efanyc.org/sick-time); and Lawndale Center and Project Row Houses in Houston, Texas, as well as numerous social service organizations.

² Crip is a political reclaiming of the derogatory label „cripple“ by disabilty acitivists.

³ The Spoon Theory has been developed by Christine Miserandino (https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/).

⁴ The concept of Access Initimacy developed by Mia Mingus: https://leavingevidence.wordpress.com/2011/05/05/access-intimacy-the-missing-link/.