Keeping the Conversation Going: Rendering Each Other Capable While Creating Zines

Lee

I had several motivations for pursuing the zine project. Most significantly, as a PhD student, I had spent considerable time engaged in Mad/disabled student organizing, and in that context of outreach and advocacy had come to take on a Mad/disabled student identity. Now as a postdoctoral fellow and course instructor, I was no longer a peer to disabled students. While in the institutional hierarchy I was still a trainee, my typical ways of relating were inadequate for my evolving positionality. For the first time I was also working full-time for the university—complicit in its forms of violence and harm without a student avenue of protest, and censored and constrained in new ways. Creating zines with disabled students was an opportunity to explore new responsibilities and ways of relating to students (see Mad Student Zine Team, 2022a).

I also hoped the zine might help demonstrate and document the abundance of critical Mad student initiatives (e.g., de Bie, Woolf, et al., 2022; Landry, 2023; Ostrow & Jones, 2013; Roberts, 2009) that offer an important response to the pathologizing mainstream medical discourses and risk-averse approaches to the “crisis” in student mental health (Aubrecht, 2012, 2016; Hawkes, 2019). Little has been written on Mad/disabled student contributions, with existing work often narrowly focusing on campaigns for mental health services (Jasen, 2011) or efforts to improve physical accessibility that gained national visibility, led to legislative change, and/or became embedded in the institution (Brown, 2008; Cory et al., 2010; Danforth, 2018; Patterson, 2012). Ephemeral, less institutionally affirmed moments of local contention, such as those initiated by Mad students, are relatively unknown.

Do It Yourself (DIY) self-publishing through zines may offer an important site for theorizing Mad world-making—the work to create alternative possibilities—because it enacts fewer constraints on self-expression than other platforms like official campus newspapers and may thereby encourage the crafting of Mad cultural practices (e.g., use of humor, irony, satire) (Brouwer, 2005; Byron, 2017; Reichard, 2016). Creative formats for communicating Mad knowledges (e.g., zines, visual art) may also evade some of the identified complexities and critiques of the prose-based genre of autobiographical recovery narrative that tends to dominate contemporary mainstream mental health discourses (Costa et al., 2012; Sapouna, 2021; Woods et al., 2022). Mad student DIY material may enable elaboration of entangled Mad ontologies/ epistemologies in new and productive ways, revealing, for example, how artifacts do not merely “reflect” existing knowledge through their content, but have agency and generate new knowledge through their creation, circulation, and form. I also wondered about ways in which distress caused by social alienation can be both articulated and eased through student organizing to create zines, archive histories in zines, and the zines themselves (Agarwal et al., 2014; Caswell et al., 2017; Eisenhauer, 2010; Moore et al., 2014).

Lieve

Not knowing what to expect, nor what was expected from me, I agreed to regularly meet and think with Lee about creating a Mad Zine and we kept in contact with Jill and Hel about the progress and questions we encountered. Serving as a motive to discuss, the intra-action in creating a zine challenged our co-constitutive perspective on using zines and insights from Mad Studies to transform educational settings. Intra-action is a concept from Karen Barad describing, that “we as ‘individuals’ only exist within phenomena (particular materialized/materializing relations) in our ongoing iteratively intra-active reconfiguring.” We realize that our intra-actions during our ongoing conversations go “to the question of the making of differences, of us as ‘individuals, rather than assuming—our—independent or prior existence. We did not exist prior to our encounters but are not individually determinate’” (Kleinman & Barad, 2012, p. 34).

My intention was to keep all possibilities open because I wanted to continue to hang-out with Lee and continue to exchange about similarities and differences in our educational contexts. Experiencing zine-creation and seeing if this could be a start for international and local exchange among students and scholars disclosing as neuroatypical attracted me as a visual thinker, looking for more acceptable creative approaches to include in my own work. Mad Zines materialized on paper seemed to create a possibility to keep connection with like-minded people and was used to explore mental health as community education, contesting the way mental health knowledge is traditionally constructed, exchanged and professionally implemented, and could be used in research as I had read in Paula Cameron’s conference paper (2011).

In thinking with Lee about form and contemporary ways of exchanging information among students, we wondered about the potential of zines to enable students to express and create awareness for their perspectives on accessing and flourishing in higher education, while sharing lived experiences about good practices that really made a difference to them.

The creative formats invited by the zine call for submissions, for me, opened infinite possibilities beyond the boundaries of academic genres to replace the tired and trite (Honan, 2017, p. 20) but at the same time made me wonder if these formats would be able and allowed to complement or even contest conventional academic pure text-based publications covering student support. The question was how creating Zines with students, expressing critical perspectives about studying in Higher Education and mental wellbeing, good practices or lack of support, could change educational approaches in supporting students and generate knowledge that would otherwise be overlooked (Cameron, 2011, p. 92). For example, collage making is a way of re-using old means of expression (e.g., scraps of magazines) to create new modes of representation. I was wondering about the connection between the static product of the zine in these kinds of formats as doing or not doing something while making a relational appeal when students engage in collaboratively contributing and exchanging on this topic.

Lee

My initial participation in zine creation in 2013 was part of the crazy fun of Mad community organizing, a way to build relationships in a new Mad student peer support group I had established on campus, and to stay engaged in life while on a disability-related leave from school. In 2014, I was able to get zine creation to count as an independent study course for my PhD. By 2017, arranging for supervision and support of a student’s paid work on a research-based illustrated story of campus disability advocacy to count within my part-time employment duties as a university accessibility specialist was a major step in efforts (advanced and encouraged by Kate!) to get paid for my institutional equity work (see Sayles with de Bie, 2018).

By the time I reconnected with Lieve in 2020 with the idea of creating a Mad student zine, I was getting better at integrating disability work with paid employment and reducing my exploitation by the university. I had figured out a way to pay students for their involvement, to argue for extension of my employment contract to match the end date of the zine project grant, and to position the work so that it could be recognized in performance review and future job applications as a scholarly contribution. The idea for creating Mad/disabled student zines was in many ways a highly pragmatic way to align my work with conventional expectations for academic productivity, and to mitigate ableist prejudice on the job market that I was a risky hire. The best-case scenario was finding a fun and meaningful way to “do my (current) job” (and gain access to future jobs once this one ended). Kate would also encourage me to see this as a win for the university’s disability community in terms of retaining me at the institution.

Lieve

For me, the journey to reconnect with Lee began as a “folieke”, ⁵ a whimsical venture or “ligne de fuite” as coined by Guattari (2011) and not as something I would immediately inscribe as an official assignment. I allocated specific time slots or “vacuoles” using Deleuze’s concept (1995, p. 175), for online meetings with Lee, considering them not as working hours but as intervals dedicated to rejuvenating leisure and experimenting with other ways of thinking.

To sidestep direct confrontations with my supervisors where I would need to justify my use of labor time through progress reports and to evade feeling constrained by workplace regulations, I opted to keep my conversations with Lee about the Zine separate from my actual employment. I was afraid if the attempt to create an international zine didn’t work out, this would be another lost opportunity to transform academia working with students disclosing as neuroatypical and would destroy my arguments to allow me, and look for resources, to open up creative spaces to work with those particular students. So, I wanted to be sufficiently prepared to explain what zine-making was about and what was essential for its successful execution before taking the leap in asking to introduce this within the curriculum. However, our conversations and thinking with the project intertwined with the theoretical and practical focus of my academic work, and the use of creative and art-based approaches already deeply ingrained in my research group.

This liminal space of collaboration beyond the constraints of paid work, also marked a fresh start for being in relation with my PhD-work and thinking, unveiling opportunities for inspiration and possible transformation. Still recovering from challenging and hurtful experiences I endured in a previous role at the university advocating for vulnerable students and staff members, I had just become accustomed to carefully examining every next move I made in order to not offend people, afraid to be denied the performance my job once more. Fear and consciously examining every step you take, demands a lot of energy. So, I opted to treat the zine making project with Lee in the margins of academia, in a friendly space, to avoid energy loss and create freedom to explore and experiment with other ways of doing. Like Harney and Moten (2013, p. 11) write, it was “a mode of thinking with others, separate from the thinking that the institution requires of you, preparing you to be embedded in “the with and for,” to allow you to spend less time antagonized and antagonizing.” As I was uncertain to disclose my ongoing anxieties about work precarity in my proper context, this enabled me to find this mode of thinking with others with Mad lived experience close by. Discussing with Lee helped me to deconstruct my previous experiences to find renewed motivation to persevere at work. For instance, hearing that in Canada Lee could activate a group of students to collaboratively work as an editing team collecting responses and creating an online version of the zine, made me realize you need to involve and motivate other people. The first step is to take action finding creative collaborators to reach out to and explain the plan and expectations to attract their interest in a shared common goal. My original intent to keep this separate from work gradually shifted and I started to look for opportunities to introduce zine-making and constructing shared knowledge into my work.

Lieve

Over time, our relationship evolved in different directions with different meanings. In the beginning, it took off as how our different perspectives could serve as complementing and challenging seemingly opposite ideas about student support. Connecting with Lee, I hoped to have found a “sparring partner.” When we met at the conference, I probably still felt like a knowledgeable other, feeling well trained in how to set up the needed support for students expressing neuroatypicality. Although, listening to students telling me the conventional approaches didn’t work for all of them and remarks like “that in my position, I was not able to talk about students with neuroatypicality” in Mad Studies environments, already created cracks in this belief. A second crack came from facing exhaustion because of illness and a sense of lack of support nearby and starting to question my own position and relating to the other, that is, the students, the supervisors, and colleagues. Having to take sick leave at work because I could no longer cope with figuring out what role to fulfill, how to be useful and what kind of care I could provide for others, raised questions for me about my own needs and support to be able to return to work. During our conversations, Lee generously shared their own encounters with similar situations and feelings from both the past and present, creating a space where understanding and support flowed freely, leaving me with a sense of not being alone and no obligation to articulate my own challenges of grappling with mental well-being and adapting to my new circumstances. These conversations helped me to imagine a future academic career without having to prove or desire full recovery and what students need to become successful. So, first and foremost this relationship affected my rather rigid beliefs about supporting mental health issues in Higher Education for both students and staff and what was necessary to provide that kind of support. Besides theoretical underpinnings derived from Mad and Disability Studies affecting my thinking, differences and similarities in how things were organized at both sides of the Atlantic, stimulated me to critically rethink how to transform conventional ways of supporting students in Higher Education while valuing and including lived experience of students.

Regularly meeting, we got to know each other better which helped in relating to each other and shedding more light to our vulnerable sides. I appreciated how we cared for each other and could share our thoughts without needing them to be “correct” as we had learned to respectfully challenge each other’s perspectives. I really value how Lee first carefully listened and rephrased what I was trying to convey in halting sentences and thoughts before asking questions such as, “could it also be like …?,” “who else was involved?,” and “do you know if others had different experiences?.” Later, when I was expressing personal opinions, I was challenged in building good argumentation and critically evaluating this in light of existing knowledge. This was the second way our exchanges affected me: to include multiperspectivism and more affirmative conversational skills more consciously. I felt in coaching students I already mastered some of these skills but shifting to a scholarly position seemed to lure me in the trap of looking for one best perspective exclusively ruling out alternative approaches.

Both Kate and Lee inspired me in what else was possible and how to build and involve student communities to become their own advocates. I felt I had become quite tame and cautious at work after changing jobs, where previously I paid little attention to the consequences of my actions for myself in advocating for students with special needs. In conversing with them, I felt my activist nature was slumbering, and I was avoiding getting tangled up in conflicts. I was looking for more reconciling and acceptable ways instead of making trouble. Recognizing that side of me still needed to be addressed instead of silenced, guided me to heal and rework the previous harmful experience as a catalyzer in attempting to establish new connections with supportive colleagues. The online meetings with Lee served as safe places which helped to better distinguish my personal needs in connecting with others. When writing this article, I mentioned to Lee, “relational access” reminded me of past conversations about “rendering each other capable” during my visit to South Africa (November 2019 till January 2020), continued in online reading group discussions during Covid-time (Bozalek et al., 2021; Bozalek & Zembylas, 2023, p. 63; V. Mitchell et al., 2023). The notion I grabbed from relational access is that it helps to claim space figuring out how to become capable in what you want to achieve with the support of a friend. Bozalek and Zembylas (2023, p.72) relate rendering each other capable with Tronto’s moral element “caregiving” underscoring its moral dimension of “competency” of caregiver and receiver. Through our caring relationship, I discovered an increased sense of competence in my role as I sought and received support according to my needs. Simultaneously, I was wondering about the impact of our conversations on both Lee and the Zine-team. In educational settings, a primary emphasis is placed on the competency of students. I took out of this relationship that it is important to involve students in rendering each other capable and while teaching and organizing support you can provide opportunities to do that. It is not just the response-ability of the teachers and staff, but they can play an important role in making this possible.

Lee

The zine offered me an opportunity to explore new responsibilities and ways of relating to students—both as I transitioned out of a peer/student/youth role and more permanently into a staff/instructor/adult one, but also as my relationship to disability and disability identification evolved. When Lieve and I first met in 2018 in the context of my conference presentation on Mad student loneliness (de Bie, 2019), I was there very much still positioning myself as a Mad student, while in her conference presentation she took on the role of an inside staff activist and ally for students seeking support (Carette, 2018).

In some of our conversations during the zine creation process, it felt like we were trading places in different ways as I explored with her how I felt I was losing or abandoning my madness. I was developing stronger boundaries around my privacy and had been gaining distance from roles coordinating Mad student and Mad Pride spaces (Mad Pride Hamilton, 2013, 2014) that had regularly necessitated a kind of public disclosure. As Kate reminds me, my wellbeing also improved significantly in the months after my PhD defense, contributing to a sense of distancing from madness. When I started a postdoctoral fellowship in an environment with little visible diversity or equity commitment, I began to keep disability aspects of my life and work quiet from most coworkers. Somehow disability just didn’t seem relevant anymore. That is, until the zine project. But even as disability became a big part of my life again, I focused more on facilitating access for student collaborators than recognizing or articulating my own access needs. It felt that with the increasing privileges I had recently gained from holding a PhD and middle-class employment, it was unethical to continue identifying with disability as a position of marginality.

Seeking Lieve’s emotional and intellectual support with the zine project, and continuing our conversations through this paper, has provided a space to reflect on my evolving positionality and accountabilities. As a person who came of age in peer spaces, my ways of knowing about myself and the world around me have and continue to be so fundamentally tied to engaging in community with others who share some similar experiences, particularly related to disability. I was increasingly needing disabled staff community as I misfit my disabled student one. Lieve’s process of moving toward disability identification offered a helpful foil for exploring my own.

These relational offerings are distinct and different from the ones Kate and I describe as relational access in our webinar presentation (de Bie & Brown, 2022b). At least in these most impactful examples, Lieve did not play a role of facilitating a practical form of accessibility for me, mitigating an environmental access barrier, or relieving the effects of ableism. But the unique reflective opportunity fostered by our relationship nonetheless supported my evolving sense of self, moral agency, and thoughts on the ethics and politics of disability identification. Because I had an adequate level of access in my life through other relationships, I was able to engage with Lieve in this emotional and intellectual work.

Lee

The zine project helped me process the Mad student part of my life. When Hel and Jill reviewed an early draft of the zine and offered suggestions for making it feel less formal and more zine-y (blank space, wider borders, starting with shorter pieces before the lengthy prose), the zine team got to thinking about how to rustle up more visuals. I eventually returned to a 3x3 foot unfinished and unglued collage that had been gathering dust on my kitchen floor for over a year. In the days after my PhD graduation ceremony, I had sat for hours cutting words and images out of a dear dead friend’s magazines, trying to make sense of how a 7-year struggle could conclude with such a simple, choreographed procession. The dissonance was jarring. I was undone. Without the relationships around the zine, that collage would either still be gathering dust, folded up and shelved in a box, or recycled. Instead, I was able to place those emotions and comleted collage pieces in the company of the other zine submissions. While all my academic diplomas are boxed in a closet, I have framed and hung some of those collages. They better honor that part of my life.

Through the zine project I was also able to renew my commitments to disabled solidarity with students, just from a different role, to better understand what my disability meant for me in the workplace, and to persist in (and reshape) this environment. While my unit encouraged a culture of “kindness” and “work-life balance,” both good things in theory, the team’s values were operationalized in a way I found disabling and incongruent with my own. For example, engaged, critical feedback risked being interpreted as “uncollegial” and adding to colleagues’ workloads (see Price, 2011); and I felt I needed to keep my self-accommodation strategies (like my atypical use of time) hidden because they contravened narrow notions of professionalism, wellbeing in the workplace, and good ways to live a life. These standards were exhausting, dampened my curiosity, and made me feel like I was a problem in need of a solution.

Working with students rather than coworkers enabled a revisioning of team norms to be more disability-friendly, and provided a platform for students (and me, as an anonymous zine contributor) to share a broader range of perspectives than what I felt I could publicly express in my staff role. The zine’s expansion from a “Mad” student zine to explicitly include a broader range of identifications with neurodiversity also became personally meaningful as an autistic friend helped me understand my workplace struggles through that framework. The zine project enabled me to work in a way that had more integrity with my values and commitments to the disability community, including to myself.

It’s interesting for me to think about how the zine itself may have facilitated relational access for me. The zine project, as a companion in my life, helped me do a kind of emotional work and healing from the academic ableism of my PhD journey, unleashed my critique and creativity in generative ways, and offered legitimacy and encouragement to engage differently (even if invisibly) in my neurotypical workplace.

Lieve

Looking back, participating in the zine heavily influenced my motivation to keep asserting and investing energy in a peer mentoring course and other supportive actions in my job at the university. Listening to Lee’s perspective on community building with Mad students and the use of zines, serves as an inspiration to create more visibility for existing peer support on my campus in Ghent. To empower students to openly express and learn to formulate what they need, to access and be able to thrive in higher education, we encourage regular encounters exchanging their small stories of becoming a student in Ghent as a valuable gift to peers to support each other and notice diversity in different ways (Carette et al., 2022). We don’t tell older peers how to start or keep those conversations going but create opportunities for these mentors to engage in group exchanges, rendering each other capable in supporting their peers. We are actively exploring avenues to enhance the visibility of how this course structurally fosters a sense of belonging for students with diverse characteristics. Considering zine making as a viable option could initiate meaningful conversations during the encounters between these students and provide increased visibility into the experiences of peer support in this course.

In navigating the zine process with Lee and engaging in related discussion I found valuable learning experiences. The conversations about the Zine and updates about the necessary steps Lee had to take with student partners in Canada on the zine, gave me an impression of what was necessary. At the same time my questions challenged Lee to make the zine-making-process transparent in terms of what was happening, needed to be planned and keep it manageable.

So, while talking about fostering little care communities that promote the flourishing of diverse students, my aspiration was to gain the capability to implement this zine-making with students in my own context when I got back to work. After receiving a finalized Outliers-zine and watching the webinar, I had the opportunity to experiment with zines in local educational contexts. It asked for preparation and rethinking the applicability in the local context, while allowing the process to go in unexpected ways. I ran the basics of zine-creating with a group of international students, using several prompts making sense of the concept “home” while presenting themselves.

The zine-making enabled me to stay connected with Jill online and in person when she came over and invited me to meet in Ghent at a conference in the Guislain Museum on “Culture and Mental Health” (November 2022), sharing Zines with attendees. Again, this created the opportunity to exchange about a lot more than zines alone and make new connections with other attendees on the importance of including lived experience in knowledge construction about mental health. Discussing various advantages of employing and crafting Mad Zines in a tangible format, such as small booklets for distribution and as conversation starters, presented challenges in terms of preservation and widespread dissemination and made me aware of what you need to deal with to make it sustainable.

Briefly talking about zines during a guest lecture about Mad Studies in a course on Disability Studies, is just a first step in introducing the zine as a method with potential for community building and raising awareness to the asset of including students’ lived experiences with neuroatypicality within the curriculum. Experimenting and collecting more examples to enable and explore the potential of using these zines in an educational and research context, feels like never completely ending and keeps the conversations going.

Lee

While Lieve and I started out as PhD peers, albeit with different clinical (Lieve) and community (me) relationships to Mad students, I moved on to a relatively autonomous postdoctoral role 7 months into our relationship. As we worked on the zine and wrote this article, we navigated different workplace environments, disability experiences, relationships with students and supervisors, and degrees of power and autonomy over the conditions of our work. This meant we valued the relationships and conversations we had with each other differently, had different aspirations and needs, and felt the labor, burdens, freedoms, and joy differently over time as our respective contexts changed. Changes to our individual needs and contexts necessitate changes to our relationship.

Notably, during the zine project, it seemed that Lieve was valuing the zine creation process much more than I was. I came to many of our conversations focused on action items and next steps as project coordinator responsible for budgets, grant reports, and expected deliverables. Lieve was eager for a different kind of conversation. So were the members of the student zine team. Midway through the project, for example, we needed to decide which of two conferences to submit to and how to frame a proposal. I was focused on the political purpose and aspiring impact of the zine and a conference audience of campus mental health staff, but the students chose instead to submit an abstract about building a zine team to an event in the disability community (McMaster Disability Zine Team, 2021).

My connection to Lieve aided my ability to facilitate access for the student zine team. I could be more attentive, follow their pace, and create space for the relationships they valued with each other, because Lieve regularly reflected with me on the value of the process, and because I could express my stress with her in a more appropriate way than bringing this into my relationships with students. It was Lieve who did the relational work of persistently reaching out to set up times to connect. Had she not valued our conversations in the way she did, it’s very likely following up with her on any regular basis would have never made it off my To Do List—not for lack of care, but defeat by the disability barriers I face with email.

Lieve

Trying to write up our reflections on the zine carries a distinct weight due to the fear of losing a friend and compromising access intimacy (Mingus, 2011) cultivated during our ongoing conversations and resisting closure. The elusive feeling that Lee gets my access needs and vice-versa, is a sentiment we haven’t explicitly discussed. For instance, I came to understand Lee’s occasional disappearance from email communication as necessary recesses that help sustain our relationship. These breaks allowed me to learn from my own need for occasional withdrawals. Trusting people will re-emerge when ready, I maintain a continuous but gentle connection, steering away from discussions about deadlines and expectations.

It is crucial to refrain from imposing our thoughts and experiences while creating zines and keeping our conversation going as deliverables or replicable interdisciplinary practices. The process has affected the experience in the making (Manning, 2020, p. 21). As such, efforts should be directed toward creating opportunities to elicit similar experiences, posing challenges in establishing clear expectations and assessing the value of our endeavors for future utility.

Building a relationship is a gradual process that requires time and mutual attunement. In my conversation with Lee there was also the need to slow down communication for language reasons which in turn offered opportunities to deepen our conversations when figuring out if we understood each other well. The need for translation slows down the expression of my thoughts, making it difficult to use language both politely and non-offensively, but on the other hand it helped to carefully think about what and how I wanted to express these thoughts. Collaborating with Lee involved active listening, patiently waiting, paraphrasing, confirming intended meanings, and sharing personal examples, all contributing to the development of mutual understanding. As for Black and colleagues (2017), rediscovering the joy of active listening during the conversations played a vital role in reclaiming pleasure and fostering resilience in our professional endeavors.

Lee

My most significant learning about the complexity of relational approaches comes from Kate, who had said,

Truly reciprocal relational access only works in peer relationships. As soon as there’s a power differential, such as when one partner is in a position where they are less able to reciprocate access, we risk an imbalance of one taking too much from and exhausting another. For example, my relationship with Lee has become more and more reciprocal as I’ve become less dependent on Lee for mentorship and career support. We need to continually reflect on the give and take, engaging in feedback loops and adjustments to each other’s needs and boundaries. (prior draft of this paper, adapted from de Bie & Brown, 2022b webinar)

We are back where it all began—a webinar of Lee and Kate, where Lieve responded to.