“Fellow sufferers…they helped me tremendously.” With these words, Johan C., one of 19 historical witnesses in my research, indicated the importance of informal information exchange during the AIDS epidemic alongside official and medical communication such as government campaigns and doctor consultations. Yet both in Johan’s testimony and in the other historical testimonies, it did not remain just peer contact, but appeared to involve a much wider informal information circuit from family and friends to buddy systems and other initiatives. But what were the concrete options in Flanders and Brussels, how were they experienced, what information circulated within these informal networks and was there also a circulation of ignorance?

Ellen Van Laer

Not only official and medical networks proved important in the circulation of information during the AIDS epidemic. The historical witnesses Ellen Van Laer interacted with as part of her thesis also emphasised the importance of more informal networks such as family, friends and peers. These networks, their history, experiences with them and memories of them are the subject of this article.

The forgotten voices of AIDS in Belgium

1 December 2021: HIV ‘celebrates’ its 40th birthday. With over 40 million victims to its name, the human immunodeficiency virus is the world’s deadliest virus. Even today, more than 38 million people, including more than 17,000 Belgians, are living with the disease. But why this writer’s doom-and-gloom tone? Surely, with medication that makes the viral load undetectable and Prep that protects against infection, the disease is no longer deadly? Yes indeed, from a medical perspective, except for a cure, the disease is pretty much resolved. However, a survey of HIV-positive Belgians showed that the stigma lives on. This survey is therefore of a social nature.

Recent series like “It’s a sin” and “Pose” successfully introduced the history of the global AIDS crisis to a wider audience. At the same time, they made it clear how little we know about the Belgian AIDS crisis and what it means to live with HIV and AIDS in Belgium. Qualitative research from the bottom up can change this. Using 16 in-depth interviews, Viktor Flamand investigated how gay men, both HIV-positive and negative, experienced the AIDS crisis in Belgium. Following this, he analysed how these same people structure and build their memories.

The result was not an unequivocal statement about living with HIV, but a diverse, layered story of 16 people with their own loss, pain and unique memories.

In semi-structured interviews lasting about two hours, intersex people share their experiences. Key topics include the influence of doctors, parents’ decisions, and the impact of “coming out” as an intersex person. At this time, 17 interviews have been transcribed and metadata provided. The original recordings, transcriptions and metadata, along with the consent form, will be archived for future scientific research.

Based on a number of conversations, volunteers take the time to write down their story in book form – supplemented with photos and other memorabilia – together with the homosexual older person.

In the end, the narrators themselves decide what will be in their book of life. Of course the narrator will receive a copy, as will IHLIA and De Rietvinck, which will add the book to its collection.

Special stories

The aim of the collection, however, is not only that current and future generations can get to know these extraordinary stories, but also that the storyteller can tell her or his life story – often for the first time – and get recognition for it. That is why the books were officially presented and handed over in several rounds.

With the help of various grants and many volunteers, IHLIA has now been able to turn 43 stories into a beautiful book.