A first look at the Museum of AIDS in Africa with founder Stephanie Nolen

While volunteering at the recent International AIDS Conference in Washington DC, I had the opportunity to talk with Stephanie Nolen, a foreign correspondent for The Globe and Mail in Canada and author of “28 Stories of AIDS in Africa,” about her most recent project, the Museum of AIDS in Africa. The Museum is currently an online memorial with the goal of building an actual physical museum in South Africa by 2016.

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Sarah: How did the Museum of AIDS in Africa come about?
Stephanie: From 2003 to 2008 I covered HIV in Africa for The Globe and Mail. As part of my work, I noticed two things. The first was that people, especially in rural parts of Africa, often had — or said they had — mistaken ideas about where HIV originated. They thought it was a curse from the ancestors, that it was witchcraft, that it was invented by the CIA to wipe out Africans and keep the continent under foreign control.

Photo caption: Sarah and Stephanie at the International AIDS Conference

There was amazing new science around that time showing exactly when and where the virus made its lethal jump from monkeys to humans, and tracing the combination of misfortune and historical events that caused it to spread, slowly at first, for 60 years until it erupted into an epidemic. But it’s the virology and epidemiology of it is hard to grasp, and I could understand why people with limited access to scientific education would find it hard to believe or follow. I think that when one’s community has been hit with a disease that has infected or killed one-third of the population, it is only natural to grasp at a larger explanation that helps one try to make sense of that. So those other theories had fertile ground.

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Sarah with Museum of AIDS in Africa volunteers at the International AIDS Conference

The second thing I noticed was that Africa’s museums were a disaster: I would often have time to kill in national capitals, from Kampala to Bamako, while waiting for permits or interviews, and I’d go to the national museum, and it would be empty or decrepit or both. Museums were largely seen as colonial institutions that held nothing of interest, or weren’t welcoming, to citizens.

I was living in Johannesburg, and my closest friend was a South African museum planner named Ngaire Blankenberg who had worked on that country’s great new museums such as Constitution Hill and the Kliptown Museum. I talked to her about this and we started to think about how it would be great to do a traveling exhibit that could go to all those empty museums and “pop up” and explain the origin of HIV in an accessible, innovative way — use that neglected museum space, and tell a story that made AIDS less mystifying and less scary. When you understand something, it’s way easier to fight it.

As we looked into the idea, we quickly realized the need for an actual museum as well as a traveling exhibit: we realized there was an urgent need to collect and preserve the material history of the epidemic — objects with a critical role in the story — and that what had been preserved to date, like so much else of importance from Africa, had been taken away from the continent. To give you one example, the world’s first-known sample of HIV, which came from Leopoldville in the Congo in 1959, is now in a lab in Europe. We want to see those items repatriated to a permanent home in Africa.

And the more we talked to people about the idea of the museum, the more we heard about the importance of memory -= of a memorial, a physical place that would acknowledge the size and scale of the loss.

All that was back in 2007. We received some funding from the Open Society Initiative of Southern Africa to do an early feasibility study, we enlisted some fantastic people across Africa to join our board, we’ve been quietly working on it ever since and this year we began our public programming, as we work towards opening in a permanent home in 2016.

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What do you hope to accomplish with the virtual memorial?
The museum’s permanent home will be in South Africa — in Johannesburg or Durban — but a huge part of our mandate is to be a pan-African institution that is accessible to people across the continent, to make sure that people who never have a chance to visit the permanent site have digital access to the archive, the collections and the exhibit, and can participate in our programming. The virtual memorial gives people a place to remember those who have been lost to HIV — the details of their lives, favorite stories, legacies — preserved in the public trust and accessible anywhere.

It wasn’t one of our overt goals, but something the Memorial is already doing is conveying the scale of the African AIDS epidemic: in our first few days, we had more than 100 contributions, and they came from 18 countries across Africa. The youngest person remembered was 13 months old, the oldest in their 60s. There are lovers, colleagues, pastors, friends and children remembered — when you scroll through the memorial, you get a stark and I think very moving picture of what AIDS has taken from Africa.

What has been the reaction to the project in Africa?
At our launch at the International AIDS Conference in Washington, which was the first time we had presented the idea to the general public, there was an incredibly warm reception. Person after person stopped at our booth and said, “I’m so glad you’re doing this. This is so important. We need this.” People stopped to read the memory cards that were collecting contributions for the Memorial, and many people sat down right away, saying, “I want to remember my sister, my son, my friend.” I think there will be a lot of challenges as we build the museum — really important critical questions such as, ‘How do you build a museum to something that is still happening? How do you avoid presenting the idea that the epidemic is “over?” Whose “version” of the story will it tell?’ We’re looking forward to starting those conversations.

How can people contribute?
So many ways! We’re looking for institutions and organizations that want to share programs, materials and research. We want people to donate items to the permanent collection and archive. We need donations, of course — to our operating costs, our capital campaign and our program funding. There’s a list of the ways people can help on our website, and we’d love for people to become Friends of the Museum, because the story of AIDS in Africa is an international story and this will be an international museum — we hope to have friends around the world.

Do you have a memory of someone who has passed away from HIV/AIDS that has touched you personally that you could share?
Quite recently I lost my friend Winstone Zulu, a Zambian activist who was a hero to me and many other people. His death shook me, because since HIV treatment became accessible in Africa we’ve had, I’ve had, a tendency to forget just what we’re dealing with HIV, and I’d come to think of Winstone, who’d come so close to dying so many times, as invincible. He was fierce in his fight, but so gentle as a person; he was funny, he had this marvelous deadpan wit, and he had so much to do. He was so busy and he had such an outsize impact on the world. Life feels diminished for me, without him in it.

Any plans for a follow up to your fantastic book “28 Stories of AIDS in Africa”?
Not in book form. “28″ captures a specific moment in the history of the African pandemic — the height of the death, and the moment when community organizations and activists began to have real success in their fight for treatment, the moment of change. The epidemic is a different story today — although still an enraging and heartbreaking one. I think the museum is in many ways an extension of the book for me — “28″ was a way to capture 28 lives, one for each million Africans who were then living with HIV — but the museum is an effort to preserve the stories of millions of people whose lives have been shaped by the epidemic.


Interviewing Ms. Nolen was literally a dream come true for me. Her book “28 Stories of AIDS in Africa” has had such a profound impact on me. I highly recommend her book and encourage ONE members to check out The Museum of AIDS in Africa to show their support and also to share their own memories of people they know who have been affected by HIV/AIDS.

The Museum of AIDS in Africa on Facebook and Twitter at @MofAA

-Sarah Stone, ONE Organizer for Waterloo, ON Canada
Follow her on Twitter @ONE_in_Canada and “LIKE” the ONE Canada Facebook Page

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Pictured at top: Sarah at the Museum of AIDS in Africa’s booth at the International AIDS Conference.