I had the pleasure of delivering a talk from Mix & Match to the Black Health and the Humanities network today. The network, comprising a group of PhD and early-career scholars working within the humanities and in adjacent disciplinary fields, acts as a training programme of workshops. It is led by PI Dr Josie Gill and Research Associate Dr Amber Lascelles.
Like this project, the network is funded by The Wellcome Trust. who’ve shown a continued to commitment to funding methodologically diverse work to forward its ambition to “improve health for everyone”.
Previous workshops for the network have included talks from historians, legal scholars and sociologists, with today’s workshop focusing on the intersection between racism and illness.
I was pleased to be able to give an extended presentation of the article I’ve been working on, based on findings that I raised as evidence to the recent APPG inquiry into inequalities in experience of stem cell transplant provision.
I haven’t reproduced all of the slides here, but have generated a slideshow of the literature review portion of the presentation for those who are interested.
The abstract for the talk is reproduced below.
“Everything to Gain and Nothing to Lose?”: Patient campaigners, racialised inequity, and stem cell donor recruitment
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. Alongside existing institutional recruitment initiatives 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 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, a common practice in recruiting (often minoritised) people to biomedical projects like tissue donation. They do so 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 Wellcome Trust project Mix & Match, 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. So too do I consider how this is entangled with a sense of concern for the future beneficiaries of their work.
The paper argues for the importance of surfacing the vital work these individuals undertake on behalf of themselves and others. More broadly, it questions 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.Abstract for the network workshop