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Beyond Reparation and Critique: Relational Encounters with Disability and Care
Artistic Research Into Care through Improvisation
Sem Bannenberg & Angelo Custódio
In this paper, we explore improvised encounters with disability and care through a day-to-day experience. By inquiring about what forms of care are needed, we ask what interdependent care could be from the perspective of listening to one's own body and needs. And how can Artistic Research focusing on contemporary Disability Art help generate new methodologies of care?
In our presentation, we look at notions of crip care and improvisational practices as alternatives to issues regarding stigma surrounding research and disability. We believe that improvisation is an intrinsic part of navigating the world for a body with a disability and from which emerges a shared embodied experience.
The presentation’s format will reflect the paper’s endeavours on improvised encounters with disability and notions of crip care by including its resonances while attuning the audience to practicing listening as care and towards fostering a reparative moment of aesthesis aligned with the movement of life-affirming practices.
References
Carel, H. (2016). Epistemic injustice in healthcare. In Phenomenology of illness (pp. 180-203). Oxford University Press.
Hamington, M. (2020). Care ethics and improvisation: Can performance care? In A. Stuart Fisher & J. Thompson (Eds), Performing care: New perspectives on socially engaged performance (pp. 21-35). Manchester University Press.
Sem Bannenberg, MA. As a museologist and art historian, Sem has been focussing on the Embodiment Model of Disability and its representation in Contemporary (Disability) Art. As a Disabled comedian, he focuses on Disability and social stigma. His podcasts, Crippled Crisp Review (ended 2020) and Aardappelbetweters (since 2022), and his two theatre shows, Guardians of Imperfection (2017) and Prophets of Imperfection (2018), are prime examples of this.
Angelo Custódio, MFA, is a research-based artist experimenting with voice and performance. He creates sonic based experiences from a crip~queer perspective, informed by critical theory and embodied knowledge. Trained as a classical singer, Angelo explores the relations between poetics and techno-somatic ways of voicing. Through listening, he develops sonic encounters with the vulnerable, opening “cracks” to wild(er) spaces that utterly invite freer ecologies of living. Angelo is currently a tutor at Sandberg Institute and facilitates processes that hold space for regenerative movement and relational understandings of the bodymindvoice, with a focus on the systemic failures towards alternative corporealities.
Reading and Repair: Disability’s Inconveniences in the “Again vs. Against” Paradigm
Andries Hiskes
In contemporary debates concerning method in literary and cultural studies, various scholars make the distinction between reparative and post-critical approaches and the language of critique. In this framing, reparative approaches posit affirmative aesthetic effects of art such as regeneration, reconstruction, and rejuvenation; they are sided with the re- prefix. Critique, meanwhile, is associated with the de- prefix: to demystify, denaturalize, or destabilize. In disability studies, these same prefixes are used to delineate the concept of disability, but in a different sense. Here, the re- prefix concerns the move of restoring the disabled body to normative health, and the de- prefix in dis/ability signifies the body that supposedly does not work.
This presentation inconveniences the presumptions of these dichotomous framings and their bifurcations they make between supposed “positive” and “negative” aesthetic effects in engaging with art. Rather than presupposing that a clear distinction between “affirmative” and “critical” effects can be made, disability asks how such experiences necessarily relate to the body undergoing those experiences, and its abilities to do so. By not taking the activity of reading and experiencing art for granted, disability plays a crucial role in allowing the scholar to pose a question that both reparative reading and critique omit altogether: what does it take to be able to read?
Instead of positing this question as a problematic, however, I delineate it as an affordance. To read for affordances means reading for the way in which previously unconceived relationships between bodies, art, words, and worlds allow for the study of their equally novel operation and effects. Such a practice of reading consequently favors questions like “how does it work?” or “what does it do?” and gives them precedence over supposedly ethically favorable positions as the framings above do. Disability-as-inconvenience thus becomes disability-as-imposition, as what imposes itself in asking to be considered in engagement with art.
Dr. Andries Hiskes is Principal Lecturer Inclusion & Participation at the Department of Nursing at The Hague University of Applied Sciences. He has a background in literary studies and cultural analysis, with a specific focus on aesthetics, affect theory, and disability studies. His dissertation research focused on how literary texts and cultural artefacts themselves construe ways of reading and aesthetically judging the disabled body as a form of relationality, and how reading practices and issues of legibility themselves becoming a matter of (dis)ability within literary texts. His current research focuses on the way in which bodily capacities may become socially and culturally translated and codified into (dis)abilities.
Responding to Otherness: The Potential of Experimental-Relational Spaces of Encounter
Gustaaf Bos
In this contribution, I propose how the notion of “experimental-relational spaces of encounter” (Bos & Abma, 2022) might inspire everyday care and research practices. Experimental-relational spaces of encounter emanate due to an explorative, open-minded perseverance towards people who appear strange to people in mainstream society – intertwined with a determination to resist any tendency to colonize or tame their confusing otherness with familiar words, frames of reference, and images. By means of Project WAVE, I will illustrate the promising potential of an explicit engagement in experimental-relational spaces of encounter.
Within Project WAVE (2019-2022), we positioned difference as the main ingredient for sustainable and fitting change in complex care practices that regularly came to a standstill. Dutch people with severe intellectual disabilities and challenging behaviours are almost exclusively encountered within a highly specialized professional care system context. This renders everyday responses to a person whose behaviours are seen as challenging largely dependent on the relatively narrow interpretative frameworks and actions of professionals, trained and socialized within the specialized care system. The lack of engaging people with alternative perspectives on challenging behaviour resembles novelist Ngozi Adichie’s portrayal of the “danger of a single story” (Van Goidsenhoven, 2021): a misunderstanding based on default and incomplete assumptions, conclusions, and decisions. Ultimately, approaching behaviour that challenges with a single story in mind, can keep us from a potentially helpful, multilayered perspective.
Therefore, in Project WAVE, we experimented with structurally embedding different perspectives in twelve cases around a protagonist whose behaviour challenged. We did this via twelve people with no experience or training within healthcare whatsoever: outsider-researchers (i.e. self-conscious and socially sensitive people, with potentially relevant backgrounds, which strongly influenced their approach to life and how they related to others). By facilitating an imminent clash of outsiders’ and professionals’ perspectives, we aimed to unsettle and enrich the logic, routines and structures of stagnant care situations, while introducing and strengthening a desire by the professionals to respond/act differently. The long-term engagement of outsider-researchers facilitated a collaborative navigating of frequent conflicts and disruptions between protagonists, professionals and relatives. Through this, silent (or: silenced) voices, destructive learning cycles, and parallel worlds within the stagnant care practices became apparent. On the case level, this eventually led to substantial and sustainable changes in the quality of care.
Dr. Gustaaf Bos (1982) is researcher and lecturer at the Care Ethics department of the University of Humanistic Studies (Netherlands). Gustaaf earned his PhD in 2016 for his participatory, ethnographic and phenomenological research about encounters between people with (severe) intellectual disabilities, their neighbours, care staff and relatives. He is currently involved in various collaborative and innovative research projects within complex care practices. These projects aim to create more space for interpersonal exchange and connectedness, in order to increase mutual understanding and the quality of life of everyone involved. Gustaaf is part of the Dutch research platform on Disability Studies, Inclusion & Belonging, and the International Collaboration for Participatory Health Research.
Location
23-25 January 2025
Kontakt der Kontinenten, Amersfoortsestraat 20
3769 AS Soesterberg
Online
23-25 January 2025
Kontakt der Kontinenten, Amersfoortsestraat 20
3769 AS Soesterberg
Online
30-31 January 2025 (Zoom links to be published later)
Contact info Louis van den Hengel
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