Blood Donation Policy, Activism and the Un/‘Official’ HIV/AIDS Record

Benjamin Weil explores the history of blood donor activism in the UK.

This article is part of a week-long takeover (23-27 March) of The Polyphony by HIV Humanities guest editors José Saleiro GomesLouisa Hann, and Stian Kristensen.

Since 1983, men who have sex with men (MSM) and other so-called ‘high risk’ groups have been prohibited from donating blood in the UK on the basis of purportedly elevated rated of HIV and other transfusion-transmissible infections. In the absence of a test for the virus suspected to cause AIDS, donor deferral policy, or donor selection criteria, first took the form of a leaflet circulated at blood donor centres across the UK, advising “homosexual men who have many different partners” and “drug addicts, male and female, using injections” to abstain from giving blood.[1] While these early policy responses to the emergence of HIV/AIDS in the blood supply have been well characterised within historical scholarship (e.g. Berridge 1996; Berridge and Strong 1991; Feldman and Bayer 1999), the early response from AIDS-affected communities to the emergence of blood donor deferral criteria in the UK has been less well characterised.

In part, I suggest, this is the product of an archival footprint skewed to the “official record” of emergent blood donation policy. For, while policy proceedings are well represented within the minutes and correspondence of the Expert Advisory Group on AIDS and the National Blood Transfusion Service Advisory Committee’s Working Group on AIDS, there is little available record of how communities affected by AIDS responded to the emergence of exclusionary blood donation policy; responses that might be considered the political and discursive underpinnings of contemporary blood donor activism (or the protest of the so-called “gay blood ban”).

Arguably, the absence of a pre-blood donor activist archive may be understood as a product of the structures of power implicated in the way archives themselves are constructed – namely, skewed to the “official” record. Put another way, archives are the record of the activities of credentialed officials. In contrast, as Mattilda Sycamore (2008, 268) notes, “activism disappears from the public record almost as quickly as activists burn out and disappear from struggle.” Given the nature of activism, as affective and emotional labour, reliant on activists’ free-time and capacities, and as, largely, counter-state, counter-hegemonic struggle, producing an archivable footprint of activities and ideas may scarcely ever be the priority of an activist campaign. In the case of building a genealogy of blood donor activism, the hopes of an activist archive are particularly fragile, since, as Ronald Bayer (1999, 25) notes the gay blood ban was, for many years, considered “too hot to handle” and thus, rather than activities and actions, we may necessarily be dealing with emotional responses, moods and attitudes, expressed in passing, or cast off for some other moment in time.

But, against all odds, it is crucial that we do invest in the unarchiving of hard-to-find activist practices and community responses, since the dominant forces that shape the archive work to suppress the inclusion of outsider activities within the narratives of expert proceedings. For example, as Gary Kinsman (1997) notes, in a 1994 investigation into the (mis)handling of infected blood products, the Canadian Red Cross took advantage of the processual nature of the inquiry – as history in the making – in order to obscure and demonise responses from the gay community and otherwise deny accountability for their part in medical disaster. The most nefarious contemporary forces that enable such a re-telling of AIDS history might be understood in terms of what Sarah Schulman (2013) has described as the gentrification of AIDS politics – involving a collective, deliberate forgetting of the radical, queer politics that changed the course of the AIDS crisis forever. To rely on ‘insider’ or expert testimony of AIDS history alone, rather than to root out the hard-to-find, is to participate in the advancement of AIDS gentrification and to propagate a version of history that regards state actors alone as the benevolent force behind reform, care, or intervention (Schulman, 1998, 102).

As such, we must also remain aware of broader sociological dynamics that structure entry into biomedical archives. Credentialed “experts” are overrepresented within the archive not simply because “officials” make up the “official” of the “official record” but because outsider influence within science policy or the spheres of public health is configured by the norms of legitimate participation established by a lay/expert divide (Epstein 1996). For instance, the perspectives of AIDS-affected communities are scarcely represented within the extensive records of the Expert Advisory Group on AIDS’ work on blood donation policy from 1983-1985. Where they are included, gay community leaders have been cited or enrolled by officials from the Department of Health and Social Security to corroborate the already held views of the advisory group. In March 1985, for instance, a paper by Julian Meldrum from the Gay Monitoring and Archive Project was forwarded to a sub-group of the Expert Advisory Group working on the introduction of an antibody test for HTLV-III (as HIV was known at the time).[2] Meldrum notes in his paper that some UK clinics had been offering HTLV-III antibody testing but had ceased to because the results “were making people extremely anxious.” Meldrum offers a cautionary tale: “As you may be aware, one reason why gay men in Australia would give blood was to get syphilis tests free of charge, when they’d cost $10 or so at an STD clinic. Open-access clinics offering free STD testing are therefore an important defence for the blood-transfusion service.” Meldrum’s inclusion in this public record, otherwise devoid of outsider participation, must be read against the knowledge that his words endorsed a view held by the working group from February 1985: that alternative testing sites for the HTLV-III antibody test be made available, lest gay men were to use blood donation as a way to find out their serostatus. Thus, Meldrum’s view would hardly have been considered heterodox by the experts that peopled these working groups and who otherwise engaged with community concerns simply by imagining how gay men might react to policy initiatives. It is essential, therefore, that as well as engaging in our own practices of recording, archiving and unarchiving, we remain cognisant of the forces – political, cultural, social, local, global etc. – that govern recorded and unrecorded AIDS and public health histories – that make entry into the archive (and the history books) more or less frictive.

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Benjamin Weil is a PhD candidate in the Science and Technology Studies Department at UCL, researching blood donor activism in the UK. Working at the intersections of queer and science and technology studies, he is particularly interested in work unpacking the ongoing co-construction of science and sexuality

References:

Berridge, V., 1996. AIDS in the UK: The Making of Policy, 1981-1994. Oxford University Press, Oxford.

Berridge, V., Strong, P., 1991. AIDS in the UK: contemporary history and the study of policy. 20 Century Br Hist 2, 150–174.

Epstein, S., 1996. Impure Science: AIDS, Activism, and the Politics of Knowledge. University of California Press, Berkeley.

Feldman, E.A., Bayer, R., 1999. Blood Feuds: AIDS, Blood, and the Politics of Medical Disaster. Oxford University Press.

Kinsman, G., 1997. Managing AIDS Organizing: “Consultation,” “Partnership,” and “Responsibility” as Strategies of Regulation, in: Carroll, W.K. (Ed.), Organizing Dissent: Contemporary Social Movements in Theory and Practice: Studies in the Politics of Counter-Hegemony. Garamond Press, Toronto, pp. 213–240.

Schulman, S., 2013. The Gentrification of the Mind: Witness to a Lost Imagination. University of California Press, Berkeley.

Schulman, S., 1998. Stagestruck: Theater, AIDS, and the Marketing of Gay America. Duke University Press.

Sycamore, M.B., 2008. Gay Shame: From Queer Autonomous Space to Direct Action Extravaganza, in: Sycamore, M.B. (Ed.), That’s Revolting! Queer Strategies for Resisting Assimilation. Soft Skull Press, Berkeley.

Other Sources:

“A.I.D.S: And how it concerns blood donors”, Leaflet, Department of Health and Social

Security, National Blood Transfusion Service, 1983, JA 398/57, National Archives, London.

Extract of a paper from Julian Meldrum of the Gay Monitoring and Archive Project, 11 March

1985, Diagnostic Tests for HTLV III (HIV) for Screening of Blood Donations (01/01/1984-31/12/1985), JA 398/62, National Archives, London.

[1] “A.I.D.S: And how it concerns blood donors”, Leaflet, Department of Health and Social Security, National Blood Transfusion Service, 1983, JA 398/57, National Archives, London

[2] Extract of a paper from Julian Meldrum of the Gay Monitoring and Archive Project, 11 March 1985, Diagnostic Tests for HTLV III (HIV) for Screening of Blood Donations (01/01/1984-31/12/1985), JA 398/62, National Archives, London

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