[Fig. 01] Ice Cream, 2021.

Remembrance and the video testimonies of people living with HIV/AIDS

Mariah Nengeh Mensah

Vidéographe, and other video production and distribution organizations in Canada, the United States and Europe have preserved videos made by people living with HIV/AIDS from the 1980s to the present day. These archives testify to the global resistance of people who were HIV-positive and their remarkable contribution to the fight. This text is intended to highlight some elements of the documentation from this period.

[Fig.02] Comment vs dirais-je ?, 1995.


Gathering voices from the past

The videos in Vidéographe’s unique collection form what remains of an extraordinary and simultaneously painful and invigorating period in human history: the outbreak of HIV/AIDS.

In 1981, the publication of a medical report about the occurrence of a rare pneumonia among five men in Los Angeles was picked up by the New York Times, who announced the arrival of a new ‘gay cancer’.1 Public health experts proceeded to describe and categorize the affected individuals and we witnessed the construction of groups and populations at risk of contracting the disease. Homosexuals, haemophiliacs, Haitians, and heroin users – the ‘four Hs’ – were targeted.2 Due to a lack of understanding, HIV/AIDS came to be associated with marginalized men who were perceived as having an alternative lifestyle.

In North America, the modes of representation of AIDS in the 1980s played a determining role in the dominant response to the disease. It is important to understand that representation of HIV/AIDS as a highly contagious disease (which it isn’t) through discourse and images created a wave of panic about contamination. Simon Watney purports that the media contributed to a punitive societal reaction to AIDS by putting the general population, symbolized by the traditional family model, in opposition with menacing representations of gay men.3 This punitive discourse constructed three disconcerting images of ‘AIDS victims’: the innocent victim, abandoned by friends and family and ignorant of the realities of a life from which they were, and continued to be, excluded; the irresponsible victim, always seeking excitement but unable to answer for their acts; and the guilty victim, a pitiful man regretful of his sexual misdemeanours, who could now serve as an example not to be followed.  For women living with HIV/AIDS, the specificity of their victimization was associated with patriarchal architypes of the virgin and the whore. The virgin was seen as an innocent victim; the whore, on the other hand, was seen as a wilful carrier.

From the beginning, this repressive scenario was critiqued by men living with HIV/AIDS who wanted to shatter the stereotypes associated with gay men, and to explicitly render visible sexual desire and the cultural politics of the time. Through a meticulous process of selection and presentation of images, texts and personal stories, video allowed them to subvert the negative stereotypes and create new ways of seeing HIV-positive individuals. Women living with HIV/AIDS, although less numerous, were also able to use their voices in front of and behind the camera, to describe the misunderstood realities of, for example, mothers living with HIV/AIDS or informal carers of those living with the disease.

[Fig.03] Drawing on Life : The art of David Fincham, 1992.


Understanding the HIV-positive experience

At the current time, Vidéographe’s collection comprises eight films about HIV/AIDS, of which five are included in the body of works that I analysed in my doctoral thesis.4 I will return to the importance of these documents to the process of research and reflection but, first, I will present this rich corpus to anchor my position and understand that of the witnesses.

We can categorize the films as socially engaged, educational documentaries and personal and experimental works of fiction. There are four documentary videos published between 1989 and 1995:

  • Sehnsucht Nach Sodom [Yearning for Sodom] by Hanno Baethe (1989, Germany, 47 mins), a frank and powerful farewell tribute to actor Kurt Raab;
  • Le récit d'A (1990, Canada, 19:30), in which filmmaker Esther Valiquette tells her own story and that of her friend Andrew, confronted with various biomedical technologies and social exclusion;
  • Drawing on Life: The Art of David Fincham (1992, United States, 29 mins). Directed by Richard L. Harrison, this video paints a humorous portrait of the American artist living with AIDS, his still lives, and the impact of the disease on his life and artistic practice;
  • Comment vous dirais-je ? (1995, Canada, 32:05) by Louis Dionne, who filmed his parents’ reaction upon learning of his AIDS diagnosis.
[Fig.04] Le Récit d'A, 1990.

Far from the worrying representations of AIDS victims presented by media outlets, these works provide a dynamic and engaged image of individuals living with AIDS. They love, they work, they create, they inspire and they fight.

Then there are two experimental videos, which artist Dennis Day made during the first phase of the pandemic:

  • Got Away in the Dying Moments (1992, Canada, 5 mins) uses collage, editing and performance to explore bereavement, crisis and healing;
  • Heaven or Montréal: The Unfinished Video (1997, Canada, 5 mins) borrows the videoclip genre to illustrate the unfinished work of author Ian Middleton, who died after having lived with HIV/AIDS.
[Fig.05] Got Away in the Dying Moments, 1992.

While the revealing of a person’s HIV-positive status to others – friends, colleagues, parents, followers – is a common theme in documentaries, the main subject of works of fiction is the inevitable death that is to follow. It’s worth remembering that, between 1981 and 1998, there were no antiretroviral treatments available to fight infection and decrease the quantity of virus in the blood until it becomes indetectable, as there is today. Death often followed shortly behind a diagnosis of HIV or AIDS, as opportunistic illnesses could swiftly manifest.

Finally, there are two artistic productions made in 2021 by videomaker Mike Hoolboom:

  • The Guy on the Bed (2021, Canada, 03:50) addresses the current HIV/AIDS pandemic, which has been somewhat forgotten in the collective memory since COVID-19;
  • Ice Cream (2021, Canada, 08:10), a form of essay-documentary that articulates the critique of capitalism in reflections of AIDS, authenticity and complex identities today.

These two works encompass the thinking of other known artists and anthropologists. They encourage us to think about HIV/AIDS in the 21st century, people newly infected despite the new therapeutic options available, and the lessons learned (or not) in this humanitarian crisis. 

[Fig.06] The Guy on the Bed, 2021.


Contributions to the research process and to future development

While the battle against HIV/AIDS is no longer in the headlines, and we have ceased to talk about cultural or social representations that discriminate against those with the disease, the video testimonials live on. As Alexandra Juhasz states, when we are ready to talk about it again, they will still be there as tangible evidence of our story.5

Unlike memory or fantasy, which are personal and subjective, video is collective and objective in that it is unchanging while also being a mutually verifiable record of things that once were, are no longer […]. Video is what is left over of what visibly and audibly was in space and time. Video lasts even if we have stopped talking about what it records. When we are ready to talk about it again, it is still there even as we change and AIDS changes. (Juhasz, 2006 ; p. 323)

When I wanted to dive into these stories, the videos were there.

[Fig.07] Heaven or Montréal : The unfinished Video, 1997.

The body of my doctoral research was original. It comprised thousands of written and audiovisual documents that had publicly circulated in the Quebec media between 1981 and 1998, and addressed the subject of HIV-positive women or women living with AIDS. I grouped the media according to three types: conventional (mass) media, alternative media (grassroots associations) and scientific media (clinics). The documentation that I retained had to address the daily preoccupations of HIV-positive women through a documentary work, a dramatization, or a work of fiction. These included productions made by women living with HIV/AIDS themselves.

I employed a series of information-gathering techniques. I used key words to search databanks of Quebec newspapers, magazines and journals. I proceeded to create an inventory of documents produced by services, non-governmental organizations and community groups working with HIV-positive women, sources that were not part of the usual publication and distribution circuits. To this end, I also consulted the collections of various video documentation and dissemination centres, including the Vidéographe collection. Beyond offering free access to the collection and directing me towards the videomakers or their estates, Vidéographe was a fundamental help to me. The centre’s support facilitated my discoveries and gave me precious answers. Their generosity with time and the quality of their assistance enabled me to track down certain hard-to-find videos. Without them, a large part of my research would simply not have been possible. I thank them.

[Fig. 08] Ice Cream, 2021.

In summary, my communication thesis focused on the discourse around HIV-positive women in Quebec, and its impacts. I conclude that the visibility of women, such as in the experimental video art and documentary works made by women living with HIV/AIDS, is a means of understanding the HIV-positive experience from a female perspective. My analysis centred around the anxiety felt by women about revealing this aspect of their identity or keeping it a secret, and demonstrates the underlying power relations in the media. It portrays the momentum of HIV-positive affirmation among women and strategies for identity construction and for the creative and diverse discourses that they use.

23 years later, the videos are what remain. Vidéographe’s collection is just a part of this legacy, and it is available. It is important to return to it. It belongs to a history and a political will. Returning to the voices of the past and the re-signification of what living with HIV/AIDS represents helped me in my research. I hope it will be used by others. The video archives are necessary resources to the social justice movements that, rooted in our nostalgia for the 1980s and 1990s, can contribute to remembrance of the crisis and, ultimately, to guaranteeing that it doesn’t happen again, now or in the future.

  1.   Altman, Lawrence K., « Rare cancer seen in 41 homosexuals », The New York Times, 3 juillet 1981, section A, p. 20.
  2.   Grmek, Miko. Histoire du SIDA : début et origine d'une pandémie actuelle, Payot, Collection Médecine et sociétés, 1989, 393 p.
  3.   Watney, Simon, Policing Desire: AIDS. Pornography, and the Media, Minneapolis, University of Minnesota Press, 1989, 167 p.
  4.   Mensah, Maria Nengeh, L'anatomie du visible. Connaître les femmes séropositives au moyen des médias. Thèse présentée comme exigence partielle du doctorat en communication, 2000, Université Concordia.
  5. Juhasz, Alexandra, « Video Remains: Nostalgia, Technology, and Queer Archive Activism », GLQ: A Journal of Lesbian and Gay Studies, vol. 12, no 2, 2006, p. 319-328. 

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[Fig. 01] Musique d'intermission, 1970
Luc Bourdon