Curating the History of HIV in Uganda exhibition - January to December 2018

The Genesis......

The journey for this project began in January 2017 while I was doing some short term assignments for The AIDS Support Organisation (TASO). I was assigned to set up a TASO museum. In addition to that assignment, I requested to re-organise the now TASO College of Health Sciences library and to set up an information archive. My idea was that the old library material would be archived and the information in storage used to set up the historical museum.

While doing this, I was informed by the TASO Executive Director - Dr. Michael Etukoit, to contact the Ugandan Academy for Health Innovation and Impact, based at the Infectious Diseases Institute (IDI). We were to write a joint proposal to organise an exhibition on old Information Education and Communication/Behavior Change Communication material developed in Uganda or for Uganda during the 1980s and 1990s. As a member of their advisory board, he had mentioned that TASO was going to set up a museum. The other members, had suggested that an exhibition would be a great prelude to the museum.

I contacted the Ugandan Academy and was asked several questions as to why TASO wanted to set up a museum. Top on my list, as an information scientist, was to share information from TASO that has never been made public or that has been forgotten by the public. Information I felt  could enable people and organisations to learn more from TASO. It would provide a great educational place for all things TASO and HIV-related. Dr. Etukoit’s public health and managerial point of view was that, if HIV was expected to end as a health epidemic in 2030, then TASO was the right organisation to showcase what it has been done over the last 31 years of its existence. These answers and many more ideas shared during the subsequent meetings, were the foundation upon which this exhibition was built. Our first proposal was not successful but the second one, submitted to the Embassy of Ireland, came through. For this amazing journey so far, I say thank you to the Irish Embassy for this great opportunity.

What made my work easy?

Several things.

While we were re-organising the TASO Library, we had put aside several items that could be used for the museum. Therefore, by the time I had to identify material for the exhibition, nearly all of the old material had already been identified and put aside.

I thought back to the AIDS sensitization I received while in primary and secondary school; the drama competitions for "The Riddle" and "The Hydra", the posters, the sounding of the drum on radio and plays like Gampisi and Ndiwulira. I knew that for the generation younger than me, these were myths.

My parents have both supported the fight against HIV in different capacities. However, it is because of my Father, a former politician who began this work in the 80s as a Resistance Committee Chairperson that I remembered the handbooks, manuals and posters he had to carry around for community sensitization. I looked for and found copies of these at the ministries of Health and Education libraries. My father had also worked with the Uganda Virus Research Institute in Entebbe and as a biologist, health is his interest. I asked him to tell me specifically about the setting up of the parliamentary committee on HIV and establishment of Uganda AIDS Commission.

I had also had a chance earlier, while doing my post graduate in Wales, UK, to visit the Wellcome Library in London.. Our host used examples of posters on HIV from Uganda. Imagine my joy when I saw that someone had kept what I thought could be added to the TASO collection.

My 14 years of service with TASO meant I knew most of the people, organisations and the material that was used for communication on HIV and AIDS. As a health librarian, I used my network of other health librarians to search for possible sources and contacts. One of those people is Ms. Susan Candiru who is in charge of information and knowledge management at the Uganda AIDS Commission. The other was Ms. Sylivia Nabakka at the TASO College of Health Sciences in Kanyanya.

A lot of the information was also drawn out during the two stakeholders' meetings, visits to veteran media personnel such as Bart Kakooza (MediaPlus) and David Mutu (Uganda AIDS Commission) as well as informal talks with people who preferred to be interviewed off-the-record .

What was it like putting together all this material?

In no particular order it was fun, hectic, exasperating, inspiring and generally worth it. I never thought I would have reason to collect old material. I did not think that I would be excited over an old records book showing people who tested for HIV in 1989 regardless of their sero status. Neither did I think I would have to interview my parents' contemporaries and my former bosses. But there we are. Video interviews with them gave us invaluable insights into the challenges and lessons they learnt when HIV/AIDS, which would quickly spread like a wild fire, had just been discovered in Uganda. They also gave us the historical background of many of the lead organisations in Uganda in the field of HIV.

Working with the team

On the team of organisers are some of the best "databanks" in Uganda as regards to HI/AIDS. They have names, contacts, networks, history, background, ideas, motivation and skills.

We started out only three people doing the brainstorming and leg work. We had only one gentleman, Dr Ronnie Kasirye, who sadly left before the project was completed. He was replaced by Mr. Ivan Katwesigye who came in as a volunteer for records management. This still left a team of about ten (10) womento organise what you see today.

Along the way, I have witnessed some really fancy ideas, some of which have evolved to what is in the exhibition. Our only limitation thus far has been practicability in terms of resources, time, accessibility to material and individuals with stories to allow us present what we have on display today. Rather than trace the history of HIV in Uganda, we collected as much material as possible and let it guide us on what to do.

How many people have listened to the personal stories of the doctors who treated HIV patients when they did not know what they were treating and that the patient had no hope of survival? We tend to look at the professional side and forget that as human beings, they too are affected.

We have been to organisations, met people, collected material, listened to some really personal stories that might never had been shared and hopefully what we have put together compels you to go take an HIV test or encourage others to ensure that Uganda is not among the countries still reporting HIV-related deaths.

Appreciation

First and foremost  appreciation goes to all the past and present Librarians of TASO who collected and kept the material, and all those who have contributed to the TASO collection for the last 31 years. 

A big thank you to all our donors, the people we interviewed or planned to interview, those who emailed, those we visited, those who sent material and those who called or made a verbal contribution. Every bit contributed to the final picture.

To the team I have worked with on this, thank you for letting me be part of such a creative, dynamic and all round inspirational team.  The curation team including Ms. Kara Blackmore, Ms. Susan Candiru, Ms. Carol Nansumba and Mr. Ivan Katwesigye. The "lone ranger" on the communication team, Ms. Tracy Ahumuza. The research team, Dr. Phoebe Kajubi and Dr. Rachel King. The monitoring and evaluation team with Ms. Flavia Lubega. The Grants team - Ms. Immaculate Namutebi. The Administrative team manning the command post; Mrs. Ruth Nalunga Segawa, Mrs. Diana Asiimwe Bena and Ms. Lauren Kahunde. And finally the energy behind this all, Dr. Rosalind Parkes-Ratanshi. Ms. Ruth Nalunga and Ms. Diana Assimwe Bena from the Ugandan Academy, your effort at stirring this ship is monumental.  

To the TASO family, thank you for enduring my constant requests for information. We have made huge strides towards our museum. We are not there yet, so donot relax, more work is coming to us.

To you dear reader or visitor to the exhibition, thank you. Neither the war nor the victory belong to an individual or single organization; They both belong to all of us as Ugandans and people of the world. Let us continue this conversation and action until we are free of HIV and AIDS.

Sylvia Matovu - TASO representative on the curation team.