This exhibition is the result of long, in-depth work carried out by the Mucem for several years on the theme of HIV/Aids. Why choose to talk to us about Aids today?

The exhibition “HIV/Aids, the epidemic is not over” is in fact the culmination of a story that began nearly thirty years ago at the Musée national des Arts et Traditions Populaires (ATP), with which a CNRS laboratory, the Centre d’ethnologie française, was associated. As early as 1994, debates were organised between researchers, carers, people living with HIV and NGOs, and in 2002 the first collection began. This was a possible role for the museum, that of bringing the memory of the excluded, in this case Aids patients, into the national consciousness. In this respect, it was a question of continuing to put into practice the wish of Georges Henri Rivière, founder of the ATP museum (of which the Mucem is its heir): “Give a voice to those who do not have one”.

In 2015, the project for an exhibition on this theme began to take shape. A steering committee was formed whose members are now the curators. In 2017, we opened up this group to all those interested in taking part in the exhibition design project. A monitoring committee, a collective with a loose outline, made up of people affected by the epidemic in different ways joined us – in particular people living with HIV, carers, activists and NGOs. We also organised a series of six study days between 2017 and 2019 to enable us to build a common base of shared knowledge.
Today, as the whole world looks at the trends of the Covid-19 epidemic, it is important to remember that the HIV epidemic is not over. It continues to affect marginalised populations and the fight to end Aids continues.

How can a virus be spoken about in a museum setting?

The exhibition is not about the virus as such, but about the social upheaval caused by its emergence in the early 1980s. We will show that the virus has actually been present in humans since the 1920s and that it spread throughout the world before belatedly attracting media attention because it was spreading in a particular community – that of gay men in the United States.

Because of its modes of transmission, from the outset HIV spread among previously stigmatised minorities. Stigma was concentrated in gay men, drug users, sex workers, migrants, and others in addition to the burden of the disease. But the response was swift. This is perhaps what marks out Aids the most: affected people and groups organised themselves to defend themselves and to engage in a struggle that made it a “political epidemic”.
Finally, the exhibition poses several questions to examine these upheavals: do hospitals have a better capacity to receive patients? Have doctor-patient relations improved on an interpersonal level? Has comprehensive care really become the norm? Have care until death and mourning rituals really been transformed? Has therapeutic research changed? Is the concept of “health democracy” valid? Do patients really take part today in decisions that concern them? Are state benefits such as disabled adult allowance properly allocated? Is support for the most vulnerable the norm?

Looking back at the social history of the disease and the social mobilisations that were organised against Aids serves as a reminder that the fight is far from over.

Which objects in the exhibition do you see as particularly important?

Personally, I have a lot of admiration for the Names Project panel donated in 2018 to the Mucem by the “Dutch Names Project” foundation, the Dutch offshoot of the Aids Memorial Quilt, created in the United States in 1987. The Aids Memorial Quilt is a community monument made up of textile panels that name and commemorate those who died of Aids. Each patchwork is a combination of 8 individual coffin-sized panels, individually created and sewn together to form a square. Each panel honours a person who has died of Aids. Volunteers from communities affected by the epidemic are involved in making the panels and displaying the patchworks as part of a mourning ritual.

During the preparation of the exhibition, we also collected notebooks containing “confidential letters” written by prostitutes on the Champs-Elysées and the Parisian ring roads at the beginning of the 1990s to testify to the conditions in which they worked and to call on public authorities to take responsibility for their working conditions and health. It is a rare archive and a very powerful cry.

Finally, I could stop at a sign, collected in 2002 and produced by the NGO Migrants against AIDS, on which is written: “We survived slavery. We survived colonisation. We survived forced migration. We will survive Aids.” The message is very powerful and places Aids within the context of a long history of post-colonial domination.

This exhibition brought together a large number of players, particularly NGOs, involved in the fight against the epidemic...

We worked with many people concerned by the disease, grouped together in a collective that we called the “monitoring committee”. We also mobilised many players through a series of study days. All these people contributed to the project. The objects, works and photographs that we show along the visit route were chosen in relation to the monitoring committee, which took part in the various stages of the project’s design. The testimony of some of them can be found in the exhibition thanks to the texts they wrote, but also in the catalogue where we wanted to give a voice to affected persons with the aim of prioritising first-person accounts of this very special story.

The strap of the exhibition title warns that “the epidemic is not over”. Where exactly are we in the fight against Aids?

Today, there is an infection every 19 seconds and a death every 46 seconds in a world where 38 million people live with HIV.
While the fight against Aids has led to undeniable progress, such as the 100% reimbursement of medical expenses for people living with HIV, the regularisation of foreigners suffering from serious illnesses, and more recently the lifting of the ban on funeral care for people who have died of Aids, there are still battles that remain to be won. Also, has the situation of drug users, migrants, sex workers, transgender people and prisoners really improved in the last ten, twenty or thirty years?