Networks of Care: Coming Together and Making Change with Dr Rachel Clarke and Camille Sapara Barton
by Rachel Hare
When nine-year-old Keira died in a car accident, her heart was transplanted into Max, who was exactly the same age. A few months later, Keira’s parents would see Max in the news and work out the connection; they contacted his family, travelled to meet them, and used a stethoscope to listen to their daughter’s heart beating in the chest of the boy they saved. These are the extraordinary real-life events at the heart of Dr Rachel Clarke’s brand new book, The Story of a Heart (2024). Although centring on two children, they could not have happened without the actions of innumerable other people: from the incredible kindness of Keira’s sister Katelyn who suggested donating her organs to the incredible skill of surgeon Asif Hassan who operated on Max; from the passersby who gave Keira chest compressions to the networks of doctors and researchers who made transplants possible. As Rachel explains in an interview with Chris Evans, the story does not end there: after years of campaigning, Max and Keira’s Law led to thousands more people being considered for organ donation: ‘there are people today whose lives are still being saved by Max and Keira’. Rachel hopes that her book will help ‘stimulate conversation on a national level’ and encourage us all to speak to our family and friends about what matters to them at the end of their lives. She will join Good Grief Festival Founding Director Professor Lucy Selman for a very special conversation at Front Room on Saturday, 12th October.
Writer, artist and somatic practitioner Camille Sapara Barton shares Rachel’s desire to open up discussions that we might sometimes avoid. On a Grief Out Loud podcast with Jana DeCristofaro, Camille explains that much of their work is inspired by the grief tending rituals of the Dagara people from West Africa, who regularly gather to grieve together, as they believe that unresolved emotions harm both individuals and their community. In this context, grief is conceived as ‘generative’, shifting our perspective in ways that are ‘supportive to the web of life’ and can, in the right circumstances, build networks of care. Camille’s book Tending Grief: Embodied Rituals for Holding Our Sorrow and Growing Cultures of Care in Community (2024) recognises all kinds of life experiences, especially those that predominately affect people from the Global Majority and/or the LGBTQ+ community: ‘The loss of displacement from homelands, from severed lineages and ancestral ways of knowing. The grief of colonization and theft. The deep heaviness that burrows into our bodies when society tells us our bodies are wrong’. Offering practical strategies for embodied ways to reconnect to loss rather than pushing it aside, they suggest that tending to our grief together engenders ‘power and agency’: ‘When we notice that others feel the same, we can ask: does it need to be this way?’
Camille will join us for two events on Sunday, 13th October: a movement workshop and an opportunity to make a water offering (inspired by Good Grief Weston Book Club Read, Wandering Souls).
We are looking forward to welcoming Rachel and Camille to Good Grief Weston next month. Find out more on the Super Culture website!
An Evening with Dr Rachel Clarke (Saturday, 12th October, 18.30–20.00) https://superculture.org.uk/listings/good-grief-weston-an-evening-with-dr-rachel-clarke
Tending Grief Through Movement with Camille Sapara Barton (Sunday, 13th October, 11.00–13.00) https://superculture.org.uk/listings/good-grief-weston-dance-double-bill-tending-grief-through-movement
Water Offering facilitated by Camille Sapara Barton (Sunday, 13th October, 14.00–16.00) https://superculture.org.uk/listings/good-grief-weston-water-offering