Margeaux Feldman, an activist, writer, and a PhD student at the University of Toronto, and Lauren Fournier, a writer, curator, and artist, organized the conference Sick Theories, which will explore intersections between sickness and sexuality. Sick Theories will consist of workshops, panels, a keynote address, an art exhibition, and an artist roundtable. The conference will take place at the University of Toronto on November 8 and 9.
The interview that follows discusses the Sick Theories conference, the need to make space for discussions surrounding illness, and the importance of accessibility.
Julia Metraux: Margeaux, how did your own experience with fibromyalgia help inspire you to create the conference Sick Theories?
Margeaux Feldman: It came about through the process of trying to self-diagnose. I’m sure that most people who are trying to figure out what is going on with them know, it’s a very long process of waiting for test results and specialist appointments and that includes the period of time that you need to recover from going to a doctor’s appointment. During that time, I tried to find any book that I could on chronic illness and autoimmune diseases. In part to self-diagnose and in part because I felt very isolated. I did all of this reading, and I had so many thoughts that I wanted to explore and I thought to myself “How could I create a space where a bunch of humans with similar experiences could get in a room and have a conversation?” I wanted to do something that wasn’t a traditional conference, and I wanted to collaborate with Lauren. That’s the Sick Theories’s story.
JM: How did you two meet each other and decide to do the conference together?
Lauren Fournier: Back in 2014, I put up this open call for a zine called Self Care for Skeptics. I was wrestling with some questions around mental health struggles and what it means to care for yourself in the context of a feminist politics that might trouble the very idea of self-care as kind of a neoliberal imperative. Margeaux reached out to me to get a copy of the zine, we met, and became friends.
MF: When I had the idea for Sick Theories, I asked Lauren if we could have coffee, and we chatted about whether this would be something we could collaborate on, and she was into it.
JM: There was an open call for submissions for participants. How did you ensure that there was a diversity of participants?
LF: I think as far as representation, this is always something that I come back to with open calls to see who submits, who has the capacity, and who comes across the call. I drew on my knowledge of artists working in the community in Toronto around sickness, and reached out to them to submit.
MF: Lauren and I are both critical of the university as a structure and thought about who feels welcome in that space and who has been excluded. Even though we really stressed that we wanted a conference that included folks who weren’t academics, and many participating aren’t, we also realized that we might have to do to do more work on our part in making people feel welcome.
JM: How do you plan on making people who are marginalized even in conversations which discuss access to treatment? An example would be how conversations are often around how cis women struggle to get access to medical care, but they do not recognize the lengths that trans and gender nonconforming people have to go to get similar care.
MF: For us, the first step is to really say in our open call that we want to prioritize folks who are trans and are of colour. But when you receive the submissions it can be hard because some people will self-identify and some people won’t.
LF: The language for Sick Theorieshas been welcome to all genders and wanting to prioritize the voices of people who are trans or gender-nonconforming. When I think about the constitution of Sick Theoriesand the artists that are part of it, we’re happy to see a range of gender identities and expressions. It’s a good question, though, about how to continue to make sure that conversations had around gendered issues are non-exclusionary.
JM: Accessibility remains a major and important for issue for people who have illnesses or disabilities. How was your experience finding an accessible space for this conference?
MF: I was really shocked about how few buildings at U of T are accessible in the ways that we need them to be. For example, places that people can access without steps. There are many buildings that are under construction and are no longer accessible. Administrators are all over-worked, but there really wasn’t any administrative support in finding a space. Eventually, we had to get a space in Jackman Humanities Building, which is accessible but can only fit a hundred people. And when you have a waitlist of 100+ people, that’s a problem.
JM: Can you tell me of other issues or barriers that you faced for this conference?
LF: I think another point which comes with the politics of working within an academic context and wanting to include those outside of academia is money. In academia, as graduate students and adjuncts, we are so accustomed to doing unpaid work. We made the conference free to the public and presenters because money is an accessibility issue. But if we’re including folks from outside academia, expecting that they’ll do this unpaid work as well is a problem–an accessibility problem too! Artists, rightly so, expect a fee to screen their work—and we wanted to honour their labour. We are raising funds and paying all the artists honoraria, but it still isn’t a professional fee.
JM: A GoFundMe campaignwas launched to improve accessibility. What’s your response to the success of the GoFundMe so far?
LF: The response from the community has been amazing in terms of people wanting to contribute to making the event more accessible.
MF: In terms of the response to the GoFundMe, my anxious-person self was afraid that we weren’t going to get anything. As someone who spends a lot of time thinking about online culture for my research, seeing so many people wanting to support Sick Theoriesis just magic. It’s like we’ve created this “care web” to borrow Leah Lakshmi Piepzna-Samarasinha’s words.
JM: Is there anything that you would like to add about this conference?
LF: It’s good to reflect on what conferences can do as a gathering space, even as I’m aware of their limitations. This is one stepping stone toward accessibility justice, greater accessibility within institutions, and greater understanding and solidarity for people who are sick. We are happy to have a space where people are gathering to have conversations and learn from each others’ experiences across different disciplines and practices.
Sick Theories will be livestreamed on YouTube, and a link will be put on the event’s website at 9 a.m. on Thursday. This livestream will have Communication Access Real-time, which is made possible from the funds raised by community.
