Imagining Patient Zero: Sexuality, Blame, and Patient's View History in the Early North American AIDS Epidemic
Lead Research Organisation:
King's College London
Department Name: History
Abstract
Abstracts are not currently available in GtR for all funded research. This is normally because the abstract was not required at the time of proposal submission, but may be because it included sensitive information such as personal details.
People |
ORCID iD |
| Richard McKay (Principal Investigator / Fellow) |
Publications
Barr J
(2021)
The Dangers of "Us Versus Them": Epidemics Then and Now.
in Journal of general internal medicine
McKay R
(2017)
Patient Zero and the Making of the AIDS Epidemic
McKay R
(2011)
Jennifer Brier, Infectious Ideas: U.S. Political Responses to the AIDS Crisis
in Social History of Medicine
McKay RA
(2014)
"Patient Zero": the absence of a patient's view of the early North American AIDS epidemic.
in Bulletin of the history of medicine
McKay Richard A
(2017)
Patient Zero and the Making of the AIDS Epidemic
McKay, R. A.
(2013)
A Medical History of Skin: Scratching the Surface
Worobey M
(2016)
1970s and 'Patient 0' HIV-1 genomes illuminate early HIV/AIDS history in North America.
in Nature
| Title | AIDS Folies |
| Description | Recordings of McKay's interviews with key actors in the 'patient zero' story were used as the basis for monologues and oratorio lyrics in AIDS Folies, an avant-garde stage production. Johannes Müller, its Berlin-based stage director, reported that Gaétan Dugas, the so-called 'patient zero', was the inspiration for his project. Although Müller had known of this individual previously, he explained that it was the 2016 news coverage surrounding the Nature publication that prompted him to move forward with the production as a whole. Müller described AIDS Folies as a song cycle production, developed in collaboration with composer Genoel von Lilienstern, that explores myths, scientific discoveries, and activism relating to the history of the AIDS epidemic. Müller read McKay's book and learned that he had deposited his oral history interviews at the British Library (C1491: Imagining Patient Zero: Interviews about the History of the North American HIV/AIDS Epidemic). Müller travelled to London, listened to the recordings, and reproduced direct quotations from McKay's interviewees in the work (which McKay subsequently double-checked against the transcripts for accuracy). Müller interspersed a series of verbatim monologues, in German, based on these reminiscences throughout the production. He also drew short quotations across a breadth of the interviews to create the libretto of an oratorio about Dugas sung in English (at the 1 hour 35 minute mark of the performance). As the actors sing this oratorio, the producers also projected a slightly manipulated version of an image McKay uncovered in his research and published in his book. The Sophiensaele performing arts centre in Berlin hosted four performances beginning in May 2018. Six additional performances have been scheduled to take place in Vienna (three at brut Wien) and Stuttgart (three at Theater Rampe) between May 2018 and February 2019. The work was supported by a public grant, with entrance fees between €5 to 18. The producers anticipated that the work would be seen by approximately 600 audience members in Berlin, and 240 each in Vienna and Stuttgart, for an estimated total of 1,080. |
| Type Of Art | Performance (Music, Dance, Drama, etc) |
| Year Produced | 2018 |
| Impact | Too soon to report. |
| URL | https://philinerinnert.de/en/project/aids-follies-2/ |
| Title | C1491 Imagining Patient Zero: Interviews About the History of the North American HIV/AIDS Epidemic |
| Description | 50 recorded interviews were deposited at the British Library. The collection includes audiocassette tapes, digitised files, and verbatim transcripts. |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2012 |
| Impact | It is too soon to describe any notable impacts resulting from this collection. |
| URL | http://cadensa.bl.uk/uhtbin/cgisirsi/?ps=Kpo0JokB8i/WORKS-FILE/103270042/9 |
| Title | Killing Patient Zero |
| Description | Killing Patient Zero is a documentary feature film based on my monograph, Patient Zero and the Making of the AIDS Epidemic (Chicago: University of Chicago Press, 2017). In 2017, Fadoo Productions purchased the film rights; the film received its world premiere in April 2017 at the Hot Docs film festival in Toronto. The film won the Audience Award for Best Documentary Feature at Sydney's Queer Screen Film Fest 2019. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2019 |
| Impact | The film has been been available for streaming on Crave TV in Canada (over 2.5 million subscribers) since December 2019, and in February 2020 broadcast on NITV in Australia (over two million unique viewers a month). A viewer at a screening of the film at Cambridge, UK, in February 2020 described it on Twitter as 'balanced, complex, illuminating, and incredibly moving. Highly recommended.' |
| URL | https://www.fadoo.com/killingpatientzero |
| Description | My key findings suggest that a combination of accidental and deliberate modifications of the features of the 'Patient Zero' concept combined with a historically fraught subject - sexually transmitted disease - to produce and promote a powerfully stigmatising concept. First, my thesis demonstrates that the CDC's early modification of the term, from 'patient 57' to 'patient O' to 'patient 0', unwittingly misled other epidemiologists and members of the media, and later the public, into thinking this case might be the source of the outbreak. Second, my work establishes a biographical frame for Randy Shilts that permits a far greater understanding of the history book he wrote, one which has been described as among the most influential books of the late twentieth century. Shilts set out to write a popular history of the epidemic, replete with heroes and villains, and intended to cast the virus itself as a villainous character. In the course of his research he discovered the identity of the man whom the CDC had labelled as 'patient 0'. I demonstrate that when Shilts overlaid his professionally motivated reconstruction of Dugas's life upon the original virus character, this deliberate combination of deadly virus with alleged intentional transmission made a powerful impression on the popular consciousness. This was particularly true since the 'Patient Zero' story was disseminated as a news story to promote the release of the book, and was eagerly taken up by a sensation-seeking media. Third, I demonstrate that Gaétan Dugas's role as a 'sociopath' circulated widely in the North American media. More importantly, stories about Dugas entered legal journals as part of an emerging discourse about criminalising HIV transmission, at a time when several states in the U.S. were contemplating legislation to respond to the perceived threat of a generalised epidemic. Finally, by adopting an approach influenced by the literature that gives weight to the patient's perspective, I argue that Dugas's alleged 'sociopathic' behaviour can be more fruitfully discussed in terms of the decisions made by a sceptical patient who was attempting to fit often intrusive and contradictory medical advice into his own bodily experience of disease. |
| Exploitation Route | Policymakers making decisions in the ongoing debate surrounding the criminalisation of HIV transmission will benefit from a historical analysis of the development of the debate itself. In particular, they will be interested in learning how the development of the idea of the dangerous sexual psychopath, a figure whose spectre led to demands for HIV-specific laws to protect the public, can be linked to Shilts's dramatic representation of Dugas in the media. Some authors have called for more research to understand this process and how the media's conflation of HIV and criminality can affect public perception and stigma. My work will also benefit policymakers working in the fields of community health who are interested in issues of patient non-compliance and risk reduction. Journalists use individuals as a way of simplifying and illustrating elaborate stories for their readers. This reductionism is often present in discussions of epidemic origins. The media focus on a young Mexican boy as the 'Patient Zero' of the H1N1 outbreak strongly suggests that a template for reporting on emerging epidemics now exists, a key part of which is to locate 'the first patient'. Such reporting risks not only a significant oversimplification of the structural factors that influence an epidemic but also the suggestion to the public that a public health response can be reduced to eliminating the threat posed by the earliest case. I intend to engage with the above groups by writing a paper for the History and Policy website (www.historyandpolicy.org) within the next 12 months. People living with HIV and AIDS (PHAs) have often had to deal with self stigma and enacted stigma as a result of their diagnosis, and have had to cope with negative media representations of individuals transmitting the virus. My research not only demonstrates the difficulties encountered by an early person living with AIDS, but also how he coped with such problems and made sense of his diagnosis. I will continue to engage with PHAs by delivering public lectures in joint partnership with the gay archives and AIDS organisations based in the cities where I conducted my research. |
| Sectors | Communities and Social Services/Policy Creative Economy Education Healthcare Government Democracy and Justice Culture Heritage Museums and Collections Other |
| Description | As the submission process for this year's researchfish entry closed, publicity was beginning for the world premiere of Killing Patient Zero, the documentary feature film based on my monograph, Patient Zero and the Making of the AIDS Epidemic (Chicago: University of Chicago Press, 2017). I will be able to provide a fuller update in next year's submission. |
| First Year Of Impact | 2019 |
| Sector | Creative Economy,Other |
| Impact Types | Cultural Societal |
| Description | Article in The Conversation |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | On 1 April 2020 I published an article in The Conversation (https://theconversation.com/patient-zero-why-its-such-a-toxic-term-134721) to illustrate the damaging ways in which the phrase 'patient zero' was being deployed in reporting on COVID-19. At the time of this report (10 March 2021), the article had been read over 32,000 times, and was cited by The Journalist's Resource (by Harvard Kennedy School's Shorenstein Center and the Carnegie-Knight Initiative) as evidence to educate journalists on the importance of appropriate wording when reporting on disease outbreaks. |
| URL | https://journalistsresource.org/economics/patient-zero-party-coronavirus/ |
| Description | AIDS @ 30 : three decades of responding to HIV/AIDS |
| Amount | £2,810 (GBP) |
| Funding ID | 097426/Z/11/Z |
| Organisation | Wellcome Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 09/2011 |
| End | 12/2013 |
| Description | AIDS @ 30 : three decades of responding to HIV/AIDS |
| Organisation | King's College London |
| Department | Queer @ King's |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | This 8-week lecture series was organised to mark 30 years since the initial recognition of HIV/AIDS. |
| Collaborator Contribution | KCL provided funding for the lecture series, as did the Wellcome Trust. |
| Impact | There was a sequel to the lecture series, in which leftover funding went to support an open day for the Leicestershire AIDS Support Services in July 2013. LASS was able to celebrate the creation of its 25-year-anniversary oral history, and I was able to share highlights from the AIDS@30 lecture series and provide information about other HIV/AIDS oral history projects. The AIDS@30 recordings and transcripts, poster, and speaker photographs were deposited at the King's College London Archives. |
| Start Year | 2011 |
| Description | National Library of Medicine Higher Education Teaching Module |
| Organisation | National Institutes of Health (NIH) |
| Department | National Library of Medicine |
| Country | United States |
| Sector | Public |
| PI Contribution | I designed and wrote a higher education teaching module made up of six one-hour classes, based on my doctoral and ESRC-funded research. |
| Collaborator Contribution | The National Library of Medicine commissioned and paid for me to produce a higher education teaching module based on my research on 'patient zero', to tie in with an online exhibition they produced, to which I also contributed, entitled: 'Surviving & Thriving: AIDS, Politics, and Culture'. |
| Impact | The output is the higher education teaching module entitled: 'Patient Zero and the Early North American HIV/AIDS Epidemic'. |
| Start Year | 2013 |
| Description | 'Patient zero' : the legacy of a powerful origin story |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | This presentation, part of the AIDS @ 30 lecture series, provided an overview of my research into the origins, dissemination, and social consequences of the concept of 'Patient Zero' in the context of the early HIV/AIDS epidemic in North America. This lecture drew a wide audience and I subsequently learned that researchers in other countries listened to the podcast. |
| Year(s) Of Engagement Activity | 2011 |
| URL | http://www.kcl.ac.uk/artshums/ahri/centres/q@k/eventsarchive/aids@30.aspx |
| Description | AIDS @ 30 : three decades of responding to HIV/AIDS |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Type Of Presentation | workshop facilitator |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | A lecture series organised to mark 30 years since the initial recognition of the HIV/AIDS Epidemic. Podcasts of the lecture series drew attention from around the world, and within King's College London it served as a focal point to draw together individuals working on AIDS in diverse fields |
| Year(s) Of Engagement Activity | 2011 |
| URL | http://www.kcl.ac.uk/artshums/ahri/centres/q@k/eventsarchive/aids@30.aspx |
| Description | Featured interview on The Current on CBC, 1 November 2016 |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | I was invited to discuss the Nature study on The Current, a nationally broadcast current affairs radio programme on the Canadian Broadcasting Corporation (CBC), which reaches several million listeners. The CBC linked its programme webpage to my 2014 article in the Bulletin of the History of Medicine. |
| Year(s) Of Engagement Activity | 2016 |
| URL | http://www.cbc.ca/radio/thecurrent/the-current-for-november-1-2016-1.3829419/new-research-clears-gaé... |
| Description | Humanising the epidemic? : Randy Shilts and the creation of 'patient zero' |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Public lecture outlining the key factors leading to the development and dissemination of the concept of 'Patient Zero' This talk stimulated discussion in one of the communities where I had undertaken research, with some of my research participants able to hear my findings. |
| Year(s) Of Engagement Activity | 2011 |
| Description | Imagining 'patient zero' : sexuality, blame, and the origins of the North American AIDS epidemic |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | This presentation provided an overview of my research relating to the origins, dissemination, and social consequences of the concept of 'Patient Zero' in the context of the early North American AIDS epidemic. The most notable impact was to my own theorizing of subjectivity. |
| Year(s) Of Engagement Activity | 2011 |
| Description | KDocs 2020 Film Festival Keynote Presentation |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | I was invited to deliver a keynote lecture to introduce a screening of KILLING PATIENT ZERO at the KDocs social justice film festival in Vancouver in February 2020. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://static1.squarespace.com/static/55a6e522e4b0ac197c196fd7/t/5e506db15b06bd56a96360cb/158232928... |
| Description | Photographs of 'patient zero' |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | This presentation, part of the 'Images, Publics and Health: Historical and Contemporary Perpsectives' symposium, outlined the visual representations of Gaétan Dugas following the publication of And the Band Played On. Preparing the presentation and listening to others help me to develop my argument regarding visual sources in my book. |
| Year(s) Of Engagement Activity | 2011 |
| Description | Positive awareness of and attitudes to HIV |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | Yes |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | This video project - produced by Film Education, International Planned Parenthood Federation, and The People Living With HIV Stigma Index - was filmed to provide historical and contemporary perspectives on living with HIV. Section not completed |
| Year(s) Of Engagement Activity | 2011 |
| URL | http://www.learningpositive.com/resources/credits.html |
| Description | Press conference for Nature article |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | I was one of two speakers (the other was the study's lead author) presenting introductory remarks about our study and answering journalists' questions on 25 October 2016. The result of the press conference was that the journalists in attendance helped to disseminate the story globally to millions of readers and listeners, which resulted in more requests for information and interviews. |
| Year(s) Of Engagement Activity | 2016 |