Fatherhood, care, and disability - with Aaron Jackson
Episode 12 of Careful Thinking
The twelfth episode of the Careful Thinking podcast features my conversation with Aaron Jackson. Aaron is an anthropologist whose research focuses on best practice 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 explored the practical and emotional realities of intensive caregiving for fathers of children with profound physical and intellectual disabilities. It formed the basis of his ground-breaking book Worlds of Care: The Emotional Lives of Fathers Caring for Children with Disabilities, published in 2021, which uses an original combination of theoretical insight, narrative accounts and creative non-fiction, drawing both on ethnographic research with fathers and also Aaron’s personal experience of fathering a disabled child.
I first came across Aaron’s book a few years ago, when I was working, with my Open University colleagues Jonathan Rix and Alison Davies, on a scoping review of the literature on fathers’ relationships with their disabled children. The review resulted from a colloquium that Jonathan and I attended in Amsterdam in 2016, when we met with other researchers - from the Netherlands, Belgium and Iceland - who were interested in exploring this issue. Aaron’s book came along too late for us to include it in our review, but reading it made a deep impression on me. In addition to its focus on disability, the book also spoke to my broader research interests in fatherhood and men’s caregiving, which I explored in my book, Men, Masculinities and the Care of Children: Images, Ideas and Identities. So I was really pleased to have this opportunity to talk to Aaron about his research.
Aaron Jackson
We began our conversation by talking about Aaron’s academic and personal journey to researching the topic of fatherhood and disability, including the story of his relationship with his son Takoda, who was born with profound disabilities. This led into a discussion of Aaron’s doctoral research with fathers of children with disabilities in the United States. We then spoke about Aaron’s use of creative and narrative styles of writing in Worlds of Care, and the advantages and pitfalls of including reflection on one’s own personal experience in academic writing. Among the themes we touched on, in relation to Aaron’s research with fathers, were the disruption to biographical narratives caused by parenting a child with disabilities and the influence of past experiences on men’s caregiving in the present.
Our conversation also encompassed the relationship between masculinity and care, exploring the influences on men’s caregiving and the way patriarchal culture constrains men’s capacity to care. Turning from Aaron’s role as a caregiver to his experience as a receiver of care, we talked about the impact of contracting a serious illness on his caregiving, and about his critique of the paternalistic attitudes he experienced from medical professionals. Finally, we discussed the practical ways in which, on the basis of his research, Aaron believes that care for people with disabilities and support for their families might be improved.
There were many points of connection between my conversation with Aaron and previous episodes of Careful Thinking. Aaron cited Maurice Hamington’s (Episode 6) book on Embodied Care as a key influence on his thinking, and in common with Maurice and a number of other podcast guests, including Christine Leroy (Episode 7), Aaron’s work has been informed by the ideas of the French phenomenologist Maurice Merleau-Ponty. Aaron’s critique of paternalistic medical practice echoed my conversation with Carlo Leget (Episode 8), while his call for a greater emphasis on personal relationships in institutional care was reminiscent of Mary Larkin’s and Manik Deepak Gopinath’s work on relational care, which we discussed in the very first episode of the podcast. Finally, as I mention in the podcast, Aaron’s use of the term ‘cosmopolitan’, to describe communities of mutual help organised by parents and caregivers, reminded me of my discussion with Nigel Rapport, in Episode 3, of his theory of ‘cosmopolitan love’.
Here are a few quotes by Aaron from the episode:
I...realised that the more I read, there didn't seem to be any research literature that spoke to my experiences, at least not to their emotional immediacy. And there was very little on fatherhood in this context. And most of what I did come across was in the…stress and coping literature. And so my wife...she'd been reading blog posts written by other parents of disabled children, and she would sometimes tell me about what she'd read and recounted these stories. And I often found a lot of resonance in these accounts and they provided insights into the varied lives of caregivers. So I decided…that I would research fathers raising children under similar circumstances.
…
I've always been drawn to ethnographic narratives that use fictional and narrative techniques because they're so engaging and immersive. And so from the outset, I knew that I wanted to write something that I would have loved to have read early in my own life as a father and caregiver, when I was mired in confusion and searching for order and relief. And so I wanted it to be accessible to relevant readers beyond academic circles, given that my focus was on the body and care and fatherhood. And I also felt a responsibility to respectfully capture these stories about profound moments of connection and at times heartrending experiences, which I felt could be properly encountered through these techniques in the intimacy of reading, and so giving people stories they might connect with.
…
It was immediately clear to me from reading the online blogs that the experience of disruption was pretty common among parents of children with severe cognitive disabilities, which also aligned with my own experience...I found this experience of disruption holds the moral promise to unveil taken for granted ways of doing things and thinking about things, and can move caregivers beyond the various expectations that govern their lives...And so living this profoundly challenging moral transformation, it's complex and fraught with struggles and ambiguity, but I found that these challenges and demands and struggles are essential to how care is embodied and the moral wisdom of their actions as caregivers.
…
I believe [my research] helps untangle the complexities of fatherhood and masculinity in the context of extreme caregiving. It shows that fatherhood is a continuous process of embodied learning and identity formation, contextualises fatherhood within personal emotional histories shaped by dominant masculine ideals, and highlights the challenges that fathers face when their lives of care conflict with their traditional masculine roles and projects and desires and ambitions and...shows how lived histories and self-identifications and social expectations can entrench an understanding of masculinity that's grounded in personal autonomy and control and competition, which often clashes with their roles as caregivers.
…
This intervening period between getting sick and being diagnosed, that was a very dark time for me. And so I gained a first person insight into what it felt like to rely on others to survive...But...the most challenging times are often the most emotionally and spiritually demanding, and they can deepen us psychologically. And I came to intimately understand vulnerability and how dependent we are on each other, which are foundational to relating to others, because they shape the ways we connect and relate to one another.
You can listen to the whole episode here, or wherever you get your podcasts.
You can download a transcript of the episode here:
The header image is ‘Man and Child’ by Michael Pavão (2012)