panel 18 & 22Access is Care & Care is Complicated
Drawing inspiration from the disability access-focused art exhibition ACCESS IS LOVE and LOVE IS COMPLICATED (Critical Distance Centre for Curators, 2019), these two interconnected panels offer a disability studies and disability justice intervention into critical neomaterial, decolonial, and post-humanist discussions of care encounters, practices, ethics, and aesthetics. Papers speak to and build on the conference theme of “care ethics, repair, and disability justice,” while simultaneously challenging the absence within care literatures and praxis writ large of an understanding of care as interdependence, access as care, and the urgent need to recognize the agency of those positioned as “cared for.” The first panel, Access is Care, mobilizes the disability studies concept of “critical access.” Guided by a critical framework that challenges assumptions that access/inclusion unquestionably advances social justice for all disabled people, papers interrogate how power, oppression, and privilege inevitably shape access and barriers to access. Panelists consider how a critical access lens can transform our understanding of the politics and practices of care. The second panel, Care is Complicated, opens discussions of access frictions in care, or the ways that the needs, desires, and agencies of diverse life confound, intrasect, and diffract, and considers what the resulting relationalities mean for justice.
References
Critical Distance Centre for Curators (2019). Exhibition: Access is Love and Love is Complicated. https://criticaldistance.ca/program/access-is-love-and-love-is-complicated/
Panel 18: Access is Care
Chair: Jennifer Poole
Discussant: Chelsea Temple Jones
The Worlding Difference Knowledge Platform: Access as Crip Care Praxis in a Digital Space
Elisabeth Harrison & Carla Rice
In this presentation, we explore the care-full process of creating the Worlding Difference Knowledge Platform, our digital space for the transnational sharing of crip/disability and non-normative arts and culture. With form and content at the nexus of aesthetics and access, the platform features artful audio, visual, and textual artifacts by Indigenous, Black, Brown, crip, queer, and white settler artists, activists, and scholars. The platform will showcase publicly available, rhizomatic digital making, exhibition, and pedagogy spaces for creating, presenting, teaching, and learning, and incorporate a suite of applications and assets supporting these activities.
Like standards-based approaches to disability access more broadly, existing web accessibility standards do not recognize or address the vast and nuanced diversity of access needs. Through the development process of the Worlding Difference Knowledge Platform, we have come to understand how undertaking digital design through a critical access approach (Hamraie, 2017) can also be understood as a praxis of crip care (Douglas et al., 2017). Holding disability and non-normativity at the centre of our work enables us to imagine and build material infrastructures of access that facilitate the growth of access-oriented relational infrastructures: Through our platform, we aim to shift the affective atmospheres surrounding non-normativity, reshaping how people perceive and feel difference to transform relations between the non-normative and normative worlds. As disability and non-normative arts coalesce as a field and as accessibility grows as a priority, our platform seeks to allow it to flourish, both as a crucial intervention against and counterpoint to resurgent eugenics-informed ideas about human value, and as an expression of the vitality, creativity, and joy of disability and difference.
References
Douglas, P., Rice, C. & Kelly, C. (2017). Cripping care: Care pedagogies and practices. Review of Disability Studies, 13(4), 1–10.
Hamraie, A. (2017). Building access: Universal design and the politics of disability. University of Minnesota Press.
Access is Care: Racialized Queer Survivor Intimacies
Nealob Kakar
Mutual aid is a form of prefigurative politics and a decentralized method of meeting people’s survival and access needs while also challenging injustices, overturning government intrusion (Kenworthy, Hops & Hagopian, 2023), and building more liberatory ways of being in the world to “seed new futures” (Finch, 2022). It is a longstanding caring practice amongst racialized, queer, disabled, and survivor communities as a means to be “less dependent on centralized power that has a historical tendency to abandon and exploit” them (Wood, 2022, p. 145). These communities continue to build and sustain solidarity in the margins of failing colonial systems and white Western imaginaries by turning towards collective care-full/based interventions that prefigure futures and disrupt cultures of disposability and undesirability (Erickson, 2020). Mutual aid posits care as radical, collective, and generative, and locates it outside the neoliberal capitalist marketplace, which inspires a reimagining of social relations, access, and in turn care (Spade, 2020; Nadasen, 2021).
This presentation argues that the mutual aid efforts of racialized queer survivor communities build access intimacies (Mingus, 2011) in ways that social policy interventions cannot. This presentation will creatively explore racialized queer survivor care ethics and aesthetics in times of precarity amidst democracy in crisis. Specifically, it will reflect on access as care through the leveraging of meaningful relation-based caring and loving connections rather than institution-based carceral caging, reclaiming the commons for community creativity, and embodying love as life praxis as per Black Feminist Love Politics.
References
Erickson, L. (2020). Thinking about and with Collective Care. Cultivating Collective Care. https://www.cultivatingcollectivecare.com/post/thinking-about-and-with-collective-care
Finch, A. K. (2022). Introduction: Black feminism and the practice of care. Palimpsest: A Journal on Women, Gender, and the Black International, 11(1), 1–41.
Kenworthy, N., Hops, E. & Hagopian, A. (2023). Mutual aid praxis aligns principles and practice in grassroots COVID-19 responses across the US. Kennedy Institute of Ethics Journal, 33(2), 115–144.
Mingus, M. (2011, May 5). Access intimacy: The missing link. Leaving Evidence. https://leavingevidence.wordpress.com/2011/05/05/access-intimacy-the-missing-link/
Nadasen, P. (2021). Rethinking care work: (Dis) affection and the politics of caring. Feminist Formations, 33(1), 165–188.
Spade, D. (2020). Solidarity not charity: Mutual aid for mobilization and survival. Social Text, 38(1), 131–151.
Wood, L. (2022). Social movements as essential services in Toronto. In B. Bringel & G. Pleyers (Eds), Social movements and politics during COVID-19: Crisis, solidarity and change in a global pandemic (pp. 141–147). Bristol University Press.
Neuroqueer Access Intimacies and/as Care in Autistic-Led Research
Elizabeth Straus
In this presentation, we explore access and/as care in the context of autistic-led research. In academic research, team formation, recruitment, data generation, analysis, and knowledge mobilization tend to assume that people move, think, communicate, sense, and engage with the world in similar ways that are often understood as “species typical” (Rice et al., 2021). Access, in research contexts, so often receives little attention. If not excluding non-normative people from research altogether, attention tends to focus on accommodations that seek to mitigate difference or standardizing access, which often fails to meet diverse access needs (Croft et al., 2024).
In Beyond the Normative Knot, an autistic-led multimedia storymaking and interview project exploring experiences across diverse embodiments of gender, sexuality, and autistic identities, we seek to contribute to (re)making research methodologies through critical access approaches (Hamraie, 2017) that place access and/as care at the fore. This presentation will offer reflections on our team’s experience vis-à-vis access, aesthetics, and care as neuroqueer praxis in this project, in which we consider the role of aesthetics in (re)making access in research, relations of bodyminds and worlds that produce care relations that contribute to creating what Mia Mingus (2011) has called “access intimacies”, and the implications for the worldmaking potentialities of autistic research centering access as care.
References
Croft, L., Harrison, E., Grant-Young, J., McGillvray, K., Sebring, J. C. H. & Rice, C. (2024). Toward access justice in the academy. International Journal of Qualitative Methods, 23. https://doi.org/10.1177/16094069241227075
Hamraie, A. (2017). Building access: Universal design and the politics of disability. University of Minnesota Press.
Mingus, M. (2011, May 5). Access intimacies: The missing link. Leaving Evidence. https://leavingevidence.wordpress.com/2011/05/05/access-intimacy-the-missing-link/
Rice, C., Riley, S., LaMarre, A., & Bailey, K. A. (2021). What a body can do: Rethinking body functionality through a feminist materialist disability lens. Body Image, 38, 95–105.
Panel 22: Care is Complicated
Chair: Elisabeth Harrison
Discussant: Carla Rice
Following Care: Navigating Webs of Care in More-Than-Human Kin Networks
Julia Linares-Roake
Care is complicated, spanning across traditional dyadic conceptions of care-giver/receiver into multi-faceted and often tension-filled embodied experiences (Linares-Roake et al., 2024). In this presentation, I focus on my reflections through my own autoethnographic journal and visual records of my life with three dogs, a cat, and human kin; as well as working and researching-with dog-human assemblages within multispecies families with the FIDO Lab at the University of Guelph. Guided by a critical feminist posthumanist lens and an affirmative and caring ethics (Braidotti, 2022), my reflections (both visual and written) have been focused on the exploration of multispecies caring, in ways that decentre human-centric norms of care, while also following the complexity of care within and across bodies and institutions.
This presentation dwells on the issue of consent within multispecies care webs, especially when care “receivers” are unable or unavailable to communicate within the research; as well as possibilities around decentring the Western Human through focusing on other senses (e.g., olfactory, touch, etc.). Through exploring my own reflections, I consider the ways in which care can be both oppressive (e.g., Kelly, 2017) and conditional, and also a space for more-than-human flourishing; in ways that are reciprocal and can often go unnoticed when outside of “normative” expressions of care (e.g., Cudworth, 2022). I end by considering the ways in which (lack of) access to space, institutions, and norms impact the multispecies household, juggling multiple tensions and webs of caring relations.
References
Braidotti, R. (2022). Posthuman feminism. Polity.
Cudworth, E. (2022). Labors of love: Work, labor and care in dog-human relations. Gender, Work & Organization, 1–15. https://doi.org/10.1111/gwao.12814
Kelly, C. (2017). Care and violence through the lens of personal support workers. International Journal of Care and Caring, 1(1), 97–113. https://doi.org/10.1332/239788217X14866305589260
Linares-Roake, J., Breen, A. V., Martin, S. & Chalmers, H. (in press). Young carers and Covid-19: A care-full approach through (post)qualitative enquiry. International Journal of Care and Caring.
Care Is Complicated: Queer, Crip, and Abolition Feminist Fumbling Towards Transformative Justice
Naty Tremblay
“Abolition feminism does not shy away from contradictions, which are often the spark for change. Holding onto this both/and, we can and do support our collective immediate and everyday needs for safety, support, and resources while simultaneously working to dismantle carceral systems” (Davis et al., 2022). In this presentation, I will think and feel alongside the art and scholarship of several contemporary queer, POC, crip, and feminist abolitionists from Turtle Island, who have advanced key concepts for “fumbling towards Transformative Justice (TJ)” through their praxis with marginalized communities.
I will speak through a TJ framework of inquiry, considering the questions, “Who is prepared to move with and care for people who have caused harm?” “What if accountability wasn’t scary? … What if we welcomed the quickening of our pulse and the beating of our heart as signals of caring?” (Mingus, 2019). “What does it take to build capacity for being with inevitable messiness, nuance, and complexity as we navigate healing through violence and trauma together?” (Haines, n.d.).
I will forward that “fumbling”, as a queer and crip methodology, reminds us that care in the context of transformative justice is complicated, and must resist the temptations of binaries, normativity, and standardization. I will also share how my scholarship in TJ praxis moves alongside these frontline abolition-feminist scholars, inspecting the complex care work of uprooting our internalized carceral logics, our tendencies to “criminalize others,” and deconstruct our individual and collective “disposability practices” as forms of justice. Lastly, I will explore how these abolitionist strategies from the margins support what Donna Haraway calls “staying with the trouble” (Haraway, 2016), as theoretical and practical world-making strategies.
References
Davis, A. Y., Dent, G., Meiners, E. R., & Richie, B. (2022). Abolition. Feminism. Now. Haymarket Books.
Haraway, D. J. (2016). Staying with the trouble: Making kin in the Chthulucene. Duke University Press. https://doi.org/10.1215/9780822373780
Mingus, M. (2019, May 5). Dreaming accountability. Leaving Evidence. https://leavingevidence.wordpress.com/2019/05/05/dreaming-accountability-dreaming-a-returning-to-ourselves-and-each-other/
Haines, S. K. (n.d.). What is social justice somatics? Staci K Haines. https://www.stacihaines.com/context
Grieving Care: Understandings of Grief, Loss, Care, and Its Complications
Hannah Fowlie, Jennifer Poole, Chelsea Temple Jones, Kim Collins & Rebekah Ann Norman
This paper discusses the ways in which grief contributes to our understanding of care ethics and aesthetics emerging in times of precarity. Grief influences how care is imagined and enacted. Grief and care intersect; both are mechanisms entangled in the political economy and the well-being of care recipients and workers (Nishida, 2022). Grief occupies a central role in Western societies, and is both emotion and a politicized construction, arriving in our bodyminds as a felt shift in how we move through the world and as an affect mediated by contemporary understandings of loss (Head, 2016; Poole & Galvan, 2021; Kumar, 2021; Fowlie, 2024; Frantzen, 2022). To grieve care is to bring all of this to notions and practices of care. It is to embrace the felt shift and complicate care and to acknowledge the losses that always accompany colonial and capitalist care. It also invites dreams of how care could be. Thus, in this paper we describe four ways in which we grieve care to elevate and expand its possibilities: exploring disenfranchised grief through story making; re-Search (Absolon, 2023) as grief intimacy work (Poole et al, 2024); through the crip wisdom of young carers who are entangled with loss; and the ethos of care that emerges in a post-secondary classroom during discussions that feature death and loss as pivotal to disability justice. By sharing our practices, we seek to bring grief and care into conversation, creating more possibilities for caring futurities.
References
Absolon, K. E. (2022). Kaandossiwin: How we come to know: Indigenous re-Search methodologies (2nd edition.). Fernwood Publishing.
Head, L. (2016). Hope and grief in the Anthropocene: Re-conceptualising human–nature relations. Routledge. https://doi.org/10.4324/9781315739335
Fowlie, H. (2024). Grief refracted: Digital storytelling as liberatory praxis. [Unpublished doctoral dissertation]. University of Guelph.
Frantzen, M. K. (2021). “A grief more deep than me”: On ecological grief. In A. Køster & E. H. Kofod (Eds), Cultural, Existential and Phenomenological Dimensions of Grief Experience (pp. 214–228). Routledge.
Kumar, R. M. (2021). The many faces of grief: A systematic literature review of grief during the COVID-19 Pandemic. Illness, Crisis & Loss, 31(1), 100–119. https://doi.org/10.1177/10541373211038084
Nishida, A. (2022). Just care: Messy entanglements of disability, dependency, and desire. Temple University Press.
Poole, J. & Galvan, C. (2021). Grief supremacy: On grievability, whiteness and not being #allinthistogether. In N. Brooks and S. Blanchette (Eds), Narrative art and the politics of health (pp. 63–84). Anthem.
Poole, J., Zerafa, S., Galvan, C., Meerai, S. & Friedman, M. (2024, June 26). Towards grief intimacy: Story sharing as restorative methodology [Conference session]. 40th Qualitative Analysis Conference, Wilfred Laurier University, Brantford, ON, Canada.
Dr. Carla Rice (she/they) is Tier I Canada Research Chair in Feminist Studies and Social Practice at the University of Guelph. She specializes in embodiment theory, feminist of colour/intersectionality studies, post-philosophical theories, and activist arts-based research methods. At Guelph, Rice founded Re•Vision: The Centre for Art and Social Justice, a cutting-edge research creation centre and state-of-the-art traveling media-lab that explore how communities can use arts-informed research methods to advance community wellbeing and social justice more broadly.
Dr. Elisabeth Harrison (she/they) is a Research Associate at Re•Vision: The Centre for Art and Social Justice at the University of Guelph, where they contribute to projects including From InVisibility to Inclusion, which seeks to advance access to livelihoods for people with episodic disabilities, and Bodies in Translation, a project aiming to cultivate and research disability and non-normative activist art. They hold a PhD in Critical Disability Studies from York University.
Nealob Kakar (she/her) is a Social Practice and Transformational Change PhD student at the University of Guelph, a digital storytelling facilitator at Re•Vision: The Centre for Art & Social Justice, and a Research Assistant at the Community Research Ethics Office. Nealob is deeply moved by the ways racialized 2SLGBTQ+ Survivors practice care and mutual aid for one another in ways that colonial bodies of policy have not been and will never be able to. Her research aims to contribute to a body of knowledge that reconceptualizes the discipline of policy through critical community-based perspectives that rethink difference and radically re-imagine transformative futures of care.
Dr. Elizabeth Straus (she/they) is an autistic and disabled nurse scholar and Postdoctoral Fellow at Re•Vision: The Centre for Art and Social Justice at the University of Guelph. Their research involves critical and intersectional scholarship with disabled, autistic, and 2SLGBTQIA+ communities toward difference-affirming and anti-oppressive structures and practices in health care, education, and communities. They are the principal investigator of the SSHRC-funded study Beyond the Normative Knot: Life and Praxis at the Gender-Sexuality-Autism Nexus.
Julia Linares-Roake (she/they) is a PhD Candidate at the University of Guelph, in the Department of Family Relations and Applied Nutrition, as well as a Research Coordinator for a SSHRC-Funded study, “Family Care Work in Interspecies Homes.” Their research interests include critical feminist posthumanism, more-than-human care relationships, and interspecies play. Julia also works as a Research Shop Project Manager at the Community Engaged Scholarship Institute (CESI), working with the University of Guelph and community partners to engage in critical, creative, and community-based praxis.
Naty Tremblay is a PhD candidate in the Social Practice and Transformational Change program at the University of Guelph. Naty’s scholarship explores the intersections of art for social change and transformative justice praxis. Naty is also a Graduate Research Assistant at Re•Vision: The Centre for Art and Social Justice, facilitating digital storytelling programs with diverse communities. Naty also founded the Switch Collective, which produces queer interdisciplinary roving street performances to uplift stories of resilience in liminal spaces.
Hannah Fowlie is the Manager of Storytelling and Equity at the Re•Vision: The Centre for Art & Social Justice, University of Guelph, and has facilitated a multitude of digital storytelling workshops with the centre. She was a practicing social worker for ten years and is now a PhD candidate in the Social Practice and Transformational Change program at the University of Guelph. Hannah also has a lifetime love and involvement in the arts, as an actor, director, and aspiring filmmaker.
Dr. Chelsea Temple Jones is an Associate Professor in the Department of Child and Youth Studies at Brock University in St. Catharines, Canada. With a background in journalism and communication, Jones’ research focuses on collaborative story making that centres bodymind difference and, increasingly, crip theory. She is a research affiliate at Re•Vision: The Centre for Art and Social Justice.
Kimberlee (Kim) Collins (she/her) is a PhD candidate at the Dalla Lana School of Public Health at the University of Toronto in Toronto, Canada. Her research explores emotional and affective responses to climate change, particularly ecological grief, framed through crip theory and posthumanism. She is a research assistant with Re•Vision: The Centre for Art and Social Justice.
Jennifer (Jen) Poole (she/her) is a white settler from England living on the land covered by Treaty 13 (Toronto, Canada). Jen is a long-time community peer supporter and an Associate Professor in the School of Social Work at Toronto Metropolitan University. With a love of teaching/learning and a life shaped by madness and grief, Jen’s work is concerned with sanism(s), loss, pedagogy and interrupting colonialism and white supremacy.
Rebekah Ann Norman is a PhD candidate in the Department of Child and Youth Studies at Brock University. Rebekah’s research centres around young carers, with an increased focus on crip theory, critical disability studies, and mad studies. Her background is in participatory and arts-based methods of collaboration with young carers, including research exploring the relationship between leisure and care. Rebekah is also a Research Assistant at the Young Caregivers Association, where she established the Young Caregiver Council of Canada, which is designed to represent and support young carers across Canada.
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
Contact info Louis van den Hengel
Images homepage: Merel Visse, Christine Leroy
design website: Johanne de Heus and Marielle Schuurman