panel 21Materialities of Pain, Grief, and Survival
Of Pain and Skirts: Exploring the Aesthetics of Pain and Care in Assistive Technology
Alfiya Battalova
The presentation will include an analysis of the video created as part of a storytelling workshop (https://revisionstorymaking.ca/). The purpose of engaging in digital storytelling was to explore the aesthetics of embodied care while facing the materiality of pain. The aesthetics of the textures of assistive devices create tension, an ambiguous relationship that characterizes care and its manifestation. The presentation will explore the role of assistive technology in both caring for the body and contributing to pain. Using digital tools, the presentation will engage with critical disability studies and health humanities scholarship.
Below is an excerpt of the transcript accompanying the video.
What would it feel like being “found out” for me? I have a handful of pants that are my accomplices in this task of concealment. A soft foam rubber covering my leg is pliable, and over time it shapes into something that I am comfortable with, although I don’t like touching it. It feels… too chemical, too grotesque. The stocking covering the foam hides its natural decay, the yellow color, the small pieces that start falling off, and that suggests it is time to replace the foam, to go and sit in front of a prosthetist while he (it is usually he) like a sculptor recreates what will become a semblance of my leg. He will try, and it will be enough to continue fooling people. I don’t have that cover anymore. My current one is hard and plastic and has no intentions of pretending to be what it is not. And yet the longing to hide creeps in once in a while.
Alfiya Battalova holds a PhD in Disability Studies from the University of Illinois at Chicago. Alfiya's research interests include community engagement, disability and health humanities, disability and social policies, health equity, advocacy, human rights, and disability in non-Western contexts. Her recent work focuses on the experiences of people with disabilities in the municipal advisory committees and their impact on the policymaking process. Alfiya views disability not just as an important area of research but also as a lens for understanding the issues of social justice. Her work was published in Disability & Society, Social Science and Medicine, and Disability Studies Quarterly.
Grieving Communities: Co-creating Cultures of Care Among System-Impacted Families
Katherine Maldonado Fabela
While social scientists and neurobiological studies have developed models of grief that link social ties to physical and mental health impacts, such as physiological stress, poor health, mortality risks, depression, and increased drug use, Western culture often overlooks the everyday significance of grief. For system-involved families, grief is a persistent part of their social reality due to the ever-present risk of losing loved ones to incarceration, foster care, violence, substance abuse, and border separations. To move beyond the medical model that classifies grief as an individual disorder, I base my analysis on 25 photo-elicitation life histories with Latina mothers in Southern California, who are involved with Child Protective Services (CPS) and have either lost custody of their children or faced the threat of such loss. Building on feminist theories of Carework and Motherwork, I propose the concept of materialized grief. This process involves forging cultures of care amidst carceral conditions created through grieving communities. The visual narratives illustrate how social grief and care coexist amidst punishment and loss, highlighting how the capacity to hold grief fosters a culture of interdependence and care. There are two aspects of materialized grief that are common for mothers who temporarily or permanently lose custody of their children: 1) acknowledging the critique against the state and 2) creating safe healing spaces to process this grief. For system-involved families, I argue that restoring a meaningful life requires relating to each other and materializing the grief with love, care, and compassion.
Katherine Maldonado Fabela is a mother scholar from South Central Los Angeles, and a PhD candidate in the Department of Sociology at the University of California, Santa Barbara. She is an incoming professor at the University of Utah and her research interests include critical criminology, health, inequalities, and visual methodology. Her research previously examined the experiences of gang-affiliated mothers and the health effects of criminalization and violence, what she conceptualized as life-course criminalization. Currently, her research examines the experiences of Latina/Chicana mothers with the carceral system, specifically the child welfare system. The investigation centers the on institutional violence that mothers navigate via child welfare, how it affects their mental health, and the ways they resist and heal from multiple forms of criminalization through motherwork strategies. Katherine is a Pre-Doctoral Ford Foundation Fellow, American Sociology Association Minority Fellow, and American Association of University Women Fellow, among others. Her research has been funded and recognized by grants including NSF, Abolitionist Teaching Network grant, Women’s Health, Gender and Empowerment grant, among others. Katherine’s research has been published in the Journal of Critical Criminology, Aztlan Journal of Chicana/o Studies, Criminal Justice Education, and multiple book chapters. Her work on care has been included in policymaking toolkits at the United Nations and she has served as an expert witness in immigration asylum cases.
Honouring Voices: Aesthetics of Care in Exploring the Lived Experiences of Young Asian Sexual Violence Survivors in New Zealand
Ying (Ingrid) Wang
This presentation showcases innovative arts-based research focusing on the understanding of the lived experiences of young Asian sexual violence survivors in New Zealand. Through reflective thematic analysis and an arts-based analytic process, the researcher delved into the insightful narratives of these survivors who participated in the research, utilising a diverse array of artistic mediums, including collage, found poetry, painting, and moving images.
Central to this exploration was the concept of aesthetic care, which sought not only to honour the voices and stories of the research participants but also to uphold the integrity of the research endeavour itself. By intertwining aesthetic sensibilities with the rigours of academic inquiry, the researcher navigated the delicate terrain of conducting legitimate health research while remaining deeply attuned to the ethical imperative of compassionate and creative engagement.
Through the lens of arts-based methods, this presentation illuminates the transformative power of arts in research, offering insights into how the expressive capabilities of art can serve as a conduit for understanding and empowerment. By foregrounding the voices of marginalised communities and foregrounding their agency through artistic representation, this study exemplifies a paradigmatic shift towards more inclusive and ethical research methodologies. The presentation advocates an engagement with the multifaceted dimensions of aesthetic care in research, fostering dialogue on the intersectionality of art, ethics, and cultural inclusivity. By amplifying the voices of vulnerable young survivors, this research seeks an alternative and innovative way to understand and represent research data with care aesthetics.
Dr Ying (Ingrid) Wang is a research fellow at the Centre for Arts and Social Transformation at the University of Auckland. Before assuming her current position at the University of Auckland, Ying worked as a compassionate and dedicated creative arts therapist, gaining extensive experience working with immigrant clients and trauma survivors of sexual abuse. Ying is passionate about integrating culturally diverse perspectives into clinical work and academic research. She brings a unique cultural sensitivity to her work. She has published a wide range of research through books, articles, and book chapters. Recently, Ying published a book exploring the intersection of arts-based research and Chinese cultural perspectives. Her research interests encompass arts-based research on well-being, health, education, and social transformation.
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