Siblings, Disability and Care: Anthropological and Co-Created Perspectives

Co-Creation During Times of Transition

This presentation builds an understanding of the impact of major life transitions on sibling relationships – particularly the emotional, social and caregiving dynamics involved. We will look at mutual care relationships as a form of access intimacy, activist affordances, and worldmaking between disabled and non-disabled siblings. We will discuss possible directions for future research as well as recommendations for service providers, decision makers, parents and others to contribute to building sustainable, inclusive support systems and better overall outcomes. This project is supported in part by funding from the Social Sciences and Humanities Research Council.

Our Speakers include:

Prof. Pamela Block

Pamela Block is a Disability Anthropologist and Professor at Western University. Her research interests include disability culture, cultural perceptions of disability and the scholarly intersections of disability, anthropology and sociology. Her particular interest is in the intersections of gender, race, economic status, sexuality and disability movements for disability liberation (justice and rights) and disability oppression (eugenics, sterilization, mass-incarceration and killing) in Brazil, the United States and Canada. She is also interested in the emergence of disability studies scholarship around the globe.

Pamela has ADHD and anxiety and has an autistic older sister name Hope, with whom she has co-authored with about Hope's experiences as a family member, activist, and service recipient in the United States.

Helen Knoll Ries

Helen is the co-founder of Siblings Canada, an initiative of the Azrieli Foundation’s Canadian Centre for Caregiving Excellence. Siblings Canada raises awareness of the critical role siblings play in creating robust and responsive systems of care for people with disabilities.

Helen is a sibling of a person with a disability.

Dima Kassem

Dima Kassem is an Anthropology Ph.D. student at Western University focusing her research on people living with a rare disease (PLWRD) and their social support networks, the experiences they have within healthcare systems, and their transition from pediatric to adult care. She is also a graduate research assistant at Western University.

Dima's research interests were sparked from her lived experience of having a sibling with a rare medical condition and being part of a social support network.
 

This event will be chaired by: 

Dr Nikita Hayden

Nikita Hayden is a post-doctoral researcher at the University of Sheffield on the Humanising Healthcare project. Her sibling research focuses on siblings of disabled children and adults. Nikita is a voluntary research associate for Sibs, the UK charity for siblings of disabled people and is a co-founder and committee member of the Sibling Studies Network.

Tom Ryan

Tom Ryan is a PhD student based at the University of Sheffield interested in sibling relationships and learning disabilities. Tom’s thesis explores the experiences of siblings of people with learning disabilities, with the aim to gather counter-narratives that challenge dominant deficit narratives that are commonplace in the area.

Please send queries to Dr Nikita Hayden – n.hayden@sheffield.ac.uk