Fatherhood, care and disability - with Aaron Jackson

Careful Thinking

How do parents of children with disabilities create meaningful lives? In what ways do past experiences shape fathers' caregiving in the present? And how is men's care for their disabled children influenced by social norms of masculinity?

These are some of the questions we explore in this episode, with Aaron Jackson. Aaron is an anthropologist whose research focuses primarily on best practices for supporting people with intellectual disabilities, with an emphasis on active support and supported decision-making. He was recently appointed as Course Coordinator and Head Lecturer of the Masters in Disability Practice at La Trobe University in Melbourne, Australia. Aaron’s academic interests include social worlds of disability and disability care, world-building, identity and memory, gender and masculinities, philosophy of self and other, disability politics of inclusion, emotional experience, and the phenomenology of bereavement.

Aaron’s doctoral research, which explored the practical and emotional realities of intensive caregiving for fathers of children with profound physical and intellectual disabilities, formed the basis of his book Worlds of Care: The Emotional Lives of Fathers Caring for Children with Disabilities, which was published in 2021.

We explore the following topics in this episode:

Aaron's personal and academic journey to researching fatherhood, care and disability (02:34)

Aaron's ethnographic research with fathers of children with disabilities in the United States (06:52)

The combination of narrative, creative and academic styles of writing in 'Worlds of Care' (09:55)

Aaron's inclusion of his personal experience of caregiving in his research and writing (13:26)

The influence of key theorists on Aaron's thinking (18:04)

How parenting a child with a disability disrupts personal life narratives (20:55)

The focus on emotions in Aaron's research (24:25)

The role of memory and past experiences on caregiving in the present (28:33)

Fathers reframing their identities as a result of parenting a child with a disability (32:10)

Men, masculinities and care (35:33)

The influences on men's caregiving (38:15)

Embodied caregiving as a form of moral education (41:46)

Parents' mutual support as 'moral cosmopolitan communities' (44:20)

Aaron's experience of serious illness and becoming a receiver of care (47:53)

Paternalistic relationships in medical practice (50:10)

Improving care for people with disabilities and support for their families (53:19)

Aaron's plans for future research (56:45)

Some of Aaron's other publications

'The social framing of diagnoses and empathetic listening'

'When Doctors Don't Listen'

'Embodied Spaces, Cosmopolitanism and Corporeal Diversity'

'Attuned Fathering and the Moral Dimensions of Caregiving'

'Between us: Facilitated decision-making in the relational experience of profound intellectual disability'

'Building Strong Foundations: Listening to and Learning from People with Intellectual Disabilities and Their Families'

Other publications mentioned in the episode

Maurice Hamington, Embodied Care: Jane Addams, Maurice Merleau-Ponty, and Feminist Ethics

Oliver Sacks, Awakenings

Alison Davies, 'Its a problem with the brain': A discursive analysis of parents' constructions of ADHD

Alison Davies, Jonathan Rix and Martin Robb ‘Fathers’ relationships with their disabled children: a literature review’

Martin Robb, Men, Masculinities and the Care of Children: Images, Ideas and Identities

Some of the thinkers and writers discussed in the episode

Pierre Bourdieu

Maurice Merleau-Ponty

Martin Heidegger

Eva Kittay

Sara Ahmed

For a transcript of the episode, follow this link to the Careful Thinking Substack.