Introduction Performing Consent: Case study Performing Working (draft-please scroll)

Performing Working is an ongoing doctoral research at the University of the Arts Utrecht, investigating the performativity of work with a particular focus on undervalued, hidden, and unwaged forms of labour. Grounded in performance as both artistic medium and research method, the project draws on traditions that view artistic practice as a mode of inquiry in which making, documenting, and reflecting are tightly interconnected. In this sense, performance is both a way of thinking through the body and a field with its own tools for generating and transmitting knowledge. One such tool is the score: a notational form for articulating gestures, tasks, and embodied knowledge. In Performing Working, scores become a method for rendering the tacit skills of unwaged labour communicable.

A central component of the project is Illness ⇔ Work, a long-term collaboration shaped by the recognition that living with illness involves continuous, often unacknowledged labour. In partnership with the University Medical Centre Utrecht, I invited members of patient focus groups who were interested in exploring this theme. The group expanded organically to include patients, informal carers, healthcare professionals, students, and artists—many of us moving between these roles in our daily lives. Participation is shaped by personal interest and by the fluctuating capacities that illness or care responsibilities bring. We meet monthly, either at HKU or online when needed.

Our collective practice includes drawing, writing, storytelling, movement, and discussion. These methods allow knowledge to emerge through doing, rather than through predefined procedures. Our first shared outcome, An Informal Guide to Illness (2023), maps the practical and embodied skills required in the day-to-day “work” of illness.

Over time, rigid categories such as “researcher” and “participant” began to dissolve. Many group members contribute both lived experience and professional expertise; similarly, my own position spans illness, care, and artistic-academic roles. This blurring of roles led the group toward a more horizontal structure in which questions, processes, and outcomes are co-formulated and co-authored. The shift has been imperfect and sometimes difficult, echoing challenges familiar in relational art practices and participatory healthcare, yet it has been necessary for our work.

Ethical questions accompany almost every step of this process. Fluctuating capacities, shifting roles, and the emotional labour of participation constantly raise questions about responsibility and care. Consent, especially, resurfaced repeatedly—not only as the formal agreement required by institutional structures, but as an ongoing negotiation within a living, changing collective. The formal ethical review required in the first year of the doctorate brought these questions into sharp focus. Standard research instruments—checklists, consent forms, data plans—assume clarity, stability, and individual authorship. Our project, by contrast, is shifting, collective, and relational. A single form could not capture this.

Searching for alternatives, I drew inspiration from performance, activism, and sex-positive/BDSM communities, where consent is treated not only as risk management but as a practice of communication, clarity, and shared intention. Influenced by these approaches, the collective began drafting a “pact”: an evolving agreement in which members articulate their needs, limitations, and desires, and define what we hope to achieve together.

Through Performing Working, what is emerging is not a fixed model but a sustained ethical experiment. The project has also revealed how institutional review systems rest on assumptions about what research is—linear, stable, individually produced—and how artistic research unsettles those assumptions. Instead of treating the review as an obstacle, we approached it as a dialogue with the ethics committee about how consent and responsibility take shape in co-creative contexts.

Guided by care ethics, I keep returning to a simple question: What do you want, what do I want, and how can we help each other realise that? Within our collective, this becomes a practice of attunement—one that requires listening, adjusting, and continual renegotiation. Consent, in this sense, is not a checkbox but a living practice, full of mistakes, learning, and return.

PRACTICES (Placeholder)

Different examples of practices developed in Performing Working to address Performing Consent.

From Theory to Practice: Creating Structures and Designing Processes (draft-please scroll)

Following theories of “authentic”—rather than symbolic or tokenistic—participation (Kelty, 2020), I began Performing Working by experimenting with how to arrive at a genuinely collective research question. Kelty suggests that authentic participation requires that participants can co- or re-formulate the research question itself. With this in mind, I initiated two collaborations, including one with a group of people experiencing homelessness who were interested in my proposition that homelessness involves forms of labour: the full-day work of physical survival, navigating shelters, negotiating bureaucratic structures, and managing appointments that often conflict or require unaffordable travel. These activities demand effort, skill, and constant adaptation—meeting any reasonable definition of work.

I met participants through an advocacy organisation in The Hague. The group’s composition shifted from session to session due to the precarious circumstances many were living in, though a core group remained steady. Meetings took place in the organisation’s building, supported by staff members, and participants received a small attendance fee. Together with artist Bo Stokkermans—who has lived experience of homelessness—we designed a process to collectively formulate a research question rooted in both our interests and the group’s own urgencies.

Very quickly we encountered the limitations of simply asking, “What do you want?” Answering this requires a structure capable of receiving and interpreting the response, at the same time offering clarity about scope, budget, timeline, and the possibilities and limits of the project. The structure must also be flexible enough to accommodate new desires or ideas: perhaps the group prefers to make a film rather than a text; perhaps additional funding could shift the project’s scale; perhaps more time is needed because the topic matters deeply to the community. Thus the framework must be both defined and porous, inviting curiosity while keeping its assumptions open to question.

In the early stages of the Homelessness as Work group, clarity turned out to be more important than flexibility. Participants needed to understand what would be asked of them and what would not be asked, to ensure they would not be pushed beyond their capacities or intentions. Providing this clarity felt, to us, like making decisions we wished could be made collectively—and the difficulty of asking “what do you want?” persisted.

A moment of methodological insight came in 2023 during The Body at Work: the Work of Being a Body, a workshop I co-led with artist, queer sex-positive practitioner and occasional facilitator Laura Oriol at the Dutch Design Week. Laura introduced an exercise she learned in such workshops called Adoration, in which two people sit together and ask one another: “How would you like me to touch you?” Although the touch is non-erotic, the question probes need and desire, and requires making a request. Yet when formulating a request, I caught myself mostly wondering about what the other person might "not mind" doing—shaping the response toward what is socially acceptable rather than what is truly wanted.

Two implications of this exercise struck me—obvious within consent-based workshop cultures, but often overlooked in participatory artistic and research contexts. First: asking people what they want requires a process, not a single moment. Group settings come with pressures, discomforts, and internal blockages that do not disappear simply by posing the question. Avgi Saketopoulou (2023) discusses such “opacity” as an ever-present aspect of subjectivity: we cannot fully know ourselves, and consent always involves encountering what is “irreducibly alien” within us (Glissant, 1990). Thus “wanting” cannot be assumed to be transparent.

Second: when asked abruptly, without time to build trust or attunement, desire itself may be socially undesirable or misaligned with the collective aims. Maggie Nelson (2021) reminds us that desire is “a field,” not inherently positive; it can be “cruel, self-harming, elusive, destructive.” She also notes that keeping desire amorphous can be pleasurable and protective—a “fissured sovereignty”—yet desire withheld under the guise of plausible deniability eventually carries a cost, both to oneself and to the relationships that emerge. As Nelson argues, the slow work of “unearthing and owning” one’s desires remains vital, even as we acknowledge their instability and contingency.

Applying these insights to participatory research means recognising that asking communities experiencing precarity, illness, or marginalisation to articulate what they want is complex. Desire may be constrained by social expectations, structural inequality, or by internalised limits on what feels possible. It may not align with the facilitator’s expectations or with institutional timelines. It may not yet be knowable—even to the person asked. And yet, as Nelson suggests, “we don’t yet know enough”: desire unfolds in time and through relation.

For the Performing Working collaborations, this means building structures that allow desire to surface gradually rather than demanding it on command. It means accepting that collective research questions emerge through processes of attunement, negotiation, and friction. And it means recognising that participation is not simply about inviting people in, but about creating conditions in which speaking, wanting, withholding, changing one’s mind, and not knowing are all possible.

PERFORMING CONSENT - RC under construction

Contents will consist of descriptions and analyses of practices, contributions by different collaborators in the project, reflections on sources and references, articulations of our own discourse etc. 

–––– Please regard this page as a sketch ––––

What is Consent? (Placeholder)

In this part we would like to collect and examine different discourses on consent, and attempt to articulate how we navigate them.

Analyses of PRACTICES (Placeholder)

Analyses of practices developed in Performing Working to address Performing Consent.

A Site of Work: What Is Good Work? (draft-please scroll)

Because this research examines the conditions of good work while also being a site of work itself, it requires developing ethical conditions for how we collaborate and participate within it. Drawing on care ethics as articulated by Carol Gilligan and expanded by Joan Tronto, I understand ethical practice as relational, inclusive, and non-extractive. This means acknowledging the labour of everyone involved, recognising vulnerability as an inherent condition of embodied life rather than an exception, and striving for forms of collaboration grounded in shared interest and collective knowledge rather than hierarchical researcher–subject dynamics.

Traditional research models separate the researcher, who poses the questions, from subjects who are expected to provide data. These models rarely consider that participants may have their own questions or expertise to which the researcher could contribute. Their labour and knowledge often accrue little recognition or authorship, and produce limited benefit for those who helped generate it. Increasingly, this division is being challenged as inherently extractive. Yet the model persists, embedded in institutional structures, expectations, and habits of practice.

To break this pattern requires not only revising our assumptions and working methods, but potentially rethinking the very architecture of research contexts—how roles, responsibilities, and forms of knowledge are imagined and valued.

Collaboration: Illness ⇔Work (draft-please scroll)

 Illness ⇔ Work, begins from a simple but often overlooked premise: living with illness is work. Being a patient, like being a doctor or nurse, is a role within the healthcare system, but it is uniquely demanding. The labour of illness—managing symptoms, appointments, medications, uncertainty, and the emotional weight of being unwell—is largely invisible, impossible to train for, and yet central to one’s own care. This raises broader questions: What counts as work? What happens when we apply the term to activities not typically recognised as labour? And how might those who live with illness, as well as informal carers, healthcare professionals, and students, learn from each other by recognising and sharing this labour?

Since early 2023, our group—recently evolving from a working group into a collective—has met monthly to explore these questions. Participants bring varied experiences of chronic illness, caregiving, and healthcare work. Our meetings focus on articulating the skills, gestures, and decisions that constitute the “work of illness.” To do this, we use scores, a performative notation tool that records actions or processes through instructions, sketches, lists, or single words. Scores help render tacit knowledge visible, readable, and usable by others. They also create a shared creative space in which experience can be externalised and understood collectively.

This method proved immediately generative. Working through drawing, writing, movement, and conversation, we produced an initial publication, An Informal Manual for Illness: Skills, Tips and Tricks for and by People Living with Sickness (2023). The book, co-authored by all contributors, gathers strategies for “doing” illness—practical, emotional, and relational. These outcomes exceed mere guidance for care: they offer tools for being.

Within Performing Working, the theme of illness allows me to address the social exclusion built into the primacy of waged labour. Many who have experienced prolonged illness know the stigma that comes with being unable to work in the normative sense. By investigating the labour embedded in illness and care—including its complex relation to the labour market—I aim to challenge the assumption that waged work is the primary condition for citizenship and social participation.

Although initially conceived as participatory research with me as facilitator, the Illness ⇔ Work collaboration quickly destabilised traditional research roles. Our co-creative methods blurred the boundaries between researcher, artist, and participant. Everyone contributed questions, insights, and material. Over time, the project shifted from participation to what we now call a connective practice—a shared inquiry rather than a researcher-led process.

We are currently developing a series of three magazines aimed at a broad audience, each addressing a different aspect of understanding illness as work. The first issue focuses on collaboration: how we create working structures together while living with physical and mental vulnerability. Early in the process, we began drafting a document we call the Pact. Inspired by the PAACT of the Belgian Post Collective—an autonomous platform for co-creation and activism among refugees, asylum seekers, and sans papiers—our Pact asks each member two questions: What do I want to do in this project? and What do I need in order to do that? Responses range from practical (“I need a warm space to work in”) to cognitive or communicative (“I can’t read long texts,” “I need several days to reply to emails”). The Pact is an evolving tool of mutual clarity and care, supporting a shared practice shaped by vulnerability, interdependence, and collective ambition.