On Friday, I presented the developing ideas around patients’ appeal work that I’ve been writing about and that will soon be submitted for peer review.
The title for the paper was Whose Load To Bear?: Racially Minoritised Stem Cell Campaigners And The Individuated Fight For Equity. It formed part of one of the 4S panels entitled ‘load-bearing bodies’. The abstract is reproduced below.
Who carries the burden in the drive for health equity? Healthcare institutions? Policymakers? Those experiencing the effects of that inequity? Bone marrow stem cell transplant, a well-established blood disorder treatment, offers insights here. Whilst many people find a match on donor registries, others don’t. Often, it is minority ethnicity patients who end up without donors. In the UK and beyond, such individuals increasingly use social/traditional media to encourage people to register as stem cell donors. They aim to locate their own donor, whilst also diversifying the stem cell registries for future minoritised patients, demonstrating – as Ruha Benjamin notes – how individual and collective care is entangled.
Here, I centre the ambivalence of this caring work, undertaken by some of the most vulnerable amongst us. Such campaigners expose their personal illness narratives to unknown publics with the hope of ameliorating the health inequity experienced by many minoritised people who need, but cannot access, life-extending treatment. Via analysis of interviews with campaigners and related social/traditional media data collected for a Wellcome Trust Fellowship, I explore the costs of carrying this burden for an unknown and expansive racialised public – from a loss of privacy to the exacerbation of illness.
I argue for the importance of surfacing the vital work these individuals undertake on behalf of themselves and others, and question why those who bear the load to contest structural inequity are often the very people most affected by that inequity, and most in need of respite from the burden to fight it.