
Notes on Stitching our [HIV] Stories: Activist Quilts
The project titled Stitching our [HIV] Stories: Activist Quilts by Sisonke Sex Workers is an arts-based project which was conducted in 2016 in a collaboration between The MoVE Project at the African Centre for Migration & Society (ACMS), and the Sisonke Sex Worker Movement. The participants in this project created a series of mixed media artworks, referred to as quilts within the project, that were part of the South African National AIDS Council (SANAC) AIDS Quilt project. The quilts were conceptualised, designed and produced by the Sisonke participants, in partnership with MoVE facilitators. In this post I reflect on the project’s origins, the workshop process, and the exhibition of the work.
Origins of the project
The SANAC created the AIDS Quilt Project to aggregate personal stories of people who have been affected by HIV/AIDS in South Africa. The SANAC asked Sisonke offices across South Africa to create some quilts for this project. The quilts were commissioned for the 21st International AIDS Conference (AIDS 2016) which took place in Durban in July 2016. The following is from the conference website, and describes the SANAC’s thinking behind the quilts:
Inspired by the Memorial Quilts, which were 300 three by six foot panels of cloth commemorating the life of someone who has died of AIDS displayed at AIDS 2000, SANAC’s Quilt Project will display new story panels at AIDS 2016. Tapping into South Africa’s rich creative culture, the Quilt Project will visually tell the stories of people living with or affected by HIV across the country. The AIDS Quilt Project is more than simply using art as a creative outlet; every quilt shows a personal story of a South African living with or affected by HIV, AIDS and tuberculosis. The quilt speaks in a way that words cannot fully express – representing many South Africans, regardless of their gender, race, age or sexual orientation. The Project gives a human face to the epidemic, giving valuable insight into the people behind the statistic and the communities on the frontlines of the response.
The quilts were intended to show the turbulent history of HIV and AIDS in South Africa, through the eyes of people who have been affected by HIV and AIDS since the last International AIDS Conference to be held in South Africa, back in 2000. Kanya Ndaki (2017), from the South African AIDS Council, described the quilt project as being about a journey towards a more equitable and humane way of interacting with HIV and AIDS as a society:
The quilt project is about South Africa’s journey. When the International AIDS Conference came to Durban in 2000 it was a bleak time in South Africa’s history: anti-retrovirals were not available and stigma and discrimination were widespread. But also the Department of Health at that time decided to introduce an AIDS Memorial Quilt project which celebrated and commemorated the lives of those who had lost families due to HIV. AIDS 2016 would tell this journey to how we came from a time of loss and death and stigma and discrimination to where we are now where we can actually talk about treatment we can talk about stigma we can talk about HIV and we’re much more open. So what the quilts do is visually tell this story this is one.
The quilts that Sisonke Gauteng submitted for the AIDS Quilt Project tell this story from the eyes of people who sell sex for an income.
Workshop process
The Sisonke National Advocacy and Media Liaison, Katlego Rasebitse, asked MoVE collaborators to assist with the facilitation of the quilt-making process. With the help of Katlego and Greta Schuler, Elsa Oliveira and I facilitated an arts-based, activist-style workshop with ten Sisonke Gauteng members.
The workshop took place over the course of two days. It was held at the Yeoville Community Centre in inner city Johannesburg. We had access to a medium sized room. This room had just enough floor space to lay down onto the floor two, two-and-a-half meter long quilts, while still being able to walk around the room and work at tables.
We started the workshop with a facilitated discussion with the Sisonke team. In this discussion, we talked about lived experiences, ideas and knowledge linked to HIV and AIDS related to sex work in Gauteng and South Africa. While this discussion served as a general introduction and framing mechanism for the workshop, the workshop had a very short timeframe, and we had four quilts to make. That means we had to find a way to drive forward idea generation through the quilt making working process. We had to trust the art-making process as a thinking process.
We decided to finish each quilt before continuing with the next. Focusing on single quilts would provide participants enough encouragement not to become overwhelmed by the amount of work that had to be done in a short amount of time. This would ensure a momentum that would push the workshop forward. We started each quilt with a short brainstorming session. Each participant was tasked to come up with a few subject-matter ideas for that quilt, write down those ideas, and then present them to the group. We, as facilitators, guided participants in collating the important ideas arising in these presentations, helped participants brainstorm symbols and images to visualise the ideas, and assisted in designing the basic layout of the quilts. We also help participants choose what they thought the main ideas or themes for each quilt had to be. This main idea would then be transformed into a slogan, and be fabricated as a large, bold and highly readable element of the quilt. Much thought was placed in the symbolism of the images that were chosen, and of the text that would accompany those images – participants had novel ideas when it came to the imagery and language they wanted to use. As soon as the basic design for the quilt that was being worked on was decided upon, the participants would break up into smaller, somewhat informal teams, each team working on specific aspects of the quilt: cutting shapes; drawing images; pasting down material; and so forth. This workshop structure worked out well, because it gave participants focussed objectives and clear deliverables based on specific time constrains.
At the end of the second day, without anyone quite knowing how we had pulled it off, we had four quilts telling a story about HIV and AIDS in South Africa through the eyes of ten participants who sell sex for an income.
The quilts and their symbols
The quilts were designed to tell a story through images and text. They had to share sex workers’ experiences, specifically in relation to HIV and AIDS; from before the year 2000 up to the year 2016. The quilts feature four periods, and the important concerns, topics, achievements and sensibilities connected to those periods. The quilt time periods were (1) before 2000; (2) 2000 – 2006; (3) 2006 – current; and, (4) moving forward.

The times before 2000 are characterised by a lack of knowledge. Participants felt that there was much stigma, superstition, and discrimination against people with HIV and AIDS, but also particularly towards homosexual people, as well as people who sell sex. There was little support through public healthcare, and death rates were high. Participants used a lightning bolt, butterflies, prison cells, and tombstones to visualise their message.

In the years between 2000 and 2006 there was an increase in HIV and AIDS awareness and solidarity, and a general improvement in the lives of sex workers in South Africa: the 13th International AIDS Conference was held in Durban in 2000 and Sisonke was formed in 2003. During this time, however, sex workers still experienced stigma and discrimination, and although anti-retroviral drugs were available, they were not promoted by government health agencies. The participants chose symbols such as a beetroot and carrots, office tables and hospital beds, patients and nurses, marching Sisonke members, and condoms.

Participants saw the decade between 2006 and 2016 as having improved access to health care, and of having access to organisational support structures. There were many initiatives and clinics with a focus on HIV and AIDS, and information became easily accessible. Sex worker organisation also intensified with the formation of Asijiki, a coalition of organisations working towards the decriminalisation of sex work in South Africa. A tree, the sun, mobile clinics, sex worker ribbons, anti-retroviral drugs, and a road were used by participants to show growth, hope, and healthcare.

Looking forward from 2016, the participants felt that although there has been great progress with the way society works with HIV and AIDS, there still remains much work ahead. The most important issues for the participants are the decriminalisation of the sale of sex, increased sensitisation of issues relating to sex workers, and the curtailing of police harassment. Participants chose the symbol of the scales of justice, and balanced the call for decriminalisation with various issues sex workers experience. The phrase “sex work is essentially work” is stitched in gold at the bottom of the quilt. These were words spoken by Deputy President Cyril Ramaphosa at the launch of the National Sex Work Sector Plan that was held in Johannesburg in March 2016.
If you would like to read a participants’ reflection on the project, and on the messaging of individual quilts, read Clara’s article, AIDS Conference Quilt in Issue 11 of Izwi Lethu. This article makes the strong visual-narrative storytelling element of the quilts clear.
Clara (2016) AIDS Conference Quilt, Izwi Lethu Issue 11, p.7 | The full Izwi Lethu Issue 13 can be downloaded at Issuu.
In summary, the quilts made for AIDS 2016 tell a story about HIV and AIDS over the last two decades: this story starts from a place where there was a lack of knowledge, goes to building awareness in society about HIV and AIDS and in to improving access to healthcare, and ends with a statement regarding future advocacy objectives for sex workers.
What can be learnt through exhibition
The four quilts were first exhibited at the 21st International AIDS Conference in Durban, South Africa in July 2016. These quilts were part of a much larger exhibition with quilts coming from across South Africa, and from different organisations. The quilts were placed in general public areas so that a wide variety of people would have access to their messages. The UNAIDS website reported on the AIDS Quilt Project during the conference proceedings, and wrote the following:
Quilts of various sizes, colours and shapes ripple like waves by the various entrances to the Durban International Conference Centre, hosting the 21st International AIDS Conference. Laid out or hung up, inscriptions vary from “Empower together we shall win” to “Positive link.” The AIDS Quilt Project is back in South Africa telling the story of the journey from Durban 2000—the last time the AIDS conference took place in the city—to Durban 2016.
Although the four Sisonke Gauteng quilts were made for the AIDS 2016 conference, we knew that we wanted to exhibit them in Johannesburg, at the Workers Museum. We wanted to bring the quilts back to where they were made.
The Workers Museum is focussed on a range of issues linked to migration, labour, and equitable access to services. We believe that exhibiting the quilts at the Workers Museum provided important contemporary, and historical, context and resonance with the work and ideas that we aim to share and discuss within the MoVE Project, and within Sisonke. Exhibiting the quilts at the Workers Museum, therefore, was a deliberate decision:
A few months after AIDS 2016, in November 2016, the MoVE Project held the exhibition and a symposium at the Workers Museum. The exhibition was titled the HIV/AIDS Quilt Timeline.
Similarly to AIDS 2016, the MoVE Project employed the quilts as a visual component of a conference. This exhibition coincided with an arts methods conference: the third meeting series focused on arts based research a partnership between the ACMS and Coventry University, UK (#artsmethods). The symposium had an academic audience, and would provide conference members opportunities to discuss ideas related to arts-based methods, and its links to advocacy in social research. The exhibition, however, also had to stand on its own, apart from the symposium. We wanted a broader public to be able to engage with the messaging of the work.
We designed the exhibition as an advocacy exhibition: it had a strong, clear message which could support the work done by Sisonke, and it was educational in tone as much as a celebratory. Although the exhibition was focussed on the quilts, we also had a range of other relevant information sources to supplement and extend the messages of the quilts: we used relevant zines from the Sex Worker Zine Project, a newsletter from Izwi Lethu Project which reported on the AIDS 2016 conference, and informational pamphlets from various health organisations and clinics. The exhibition was designed to contribute to increasing awareness on issues relating to migration, labour, gender, health, and sexuality, but specifically in terms HIV and AIDS, and sex work.
The HIV/AIDS Quilt Timeline exhibition offered exhibition visitors opportunities to learn about migration, sex work, HIV and AIDS, the law, activism, and people’s lived stories. We conducted a small anonymous survey with exhibition visitors. People seemed to have enjoyed the artwork, the learning materials, and the personal stories. The exhibition also produced a range of sometimes conflicting emotions in people: people were inspired and thoughtful, sad and angry, thankful and happy, upset and excited. While exhibition visitors responded in a variety of ways, I have learnt that people, for the most part, appreciated the information, and the personal stories, delivered through the artworks and the educational materials. One surveyee, however, suggested more detailed and in depth educational materials, and details about the projects conducted with sex workers.
The quilts, furthermore, have been used various events such as marches and protests, but also meetings. These events could be seen as exhibition in a broader sense: as showing; displaying; presenting; showcasing; and so forth. The details of these events, organised by Sisonke, are currently unknown to me, but were related to Sisonke’s ongoing advocacy work in the fight for the decriminalisation of sex work. These quilts, as banners, are highly visible, and interesting to people. People can interpret a story regarding HIV and AIDS by reading the banners, but the banners can also start conversations between people around issues.
A particular characteristic of the exhibitions that employed the quilts, when the idea of exhibition is considered in its broader sense, was that the exhibitions were not focussed on an academic audience, and that the quilts were used as an element within a larger advocacy movement. While the quilts were focussed on personalised advocacy messages, and on specific educational materials, they functioned within an advocacy orientated assemblage produced by a range of organisations, people and places. While advocacy style exhibitions may not be the only type of exhibition of interest for researchers, this focus made the work accessible, and interesting, to a broader public.
Arts-based methods, and the artifacts/performances created through these methods, allow for emergent interaction and exploration. They create moments between people in the world. It is not possible at the beginning of projects, however, to predict what the all the outcomes of projects may be. It can also be impossible to list all of its outcomes after the project is completed. Many outcomes occur through the interaction of the participants-facilitators, or in an interaction between a viewer-participant with an artwork or event. While some outcomes can be measured, some may always remain quite ephemeral. In this project, for instance, we knew that we would have quilts, but we had no idea what stories would be told through the quilts, or to which events Sisonke members would take them, and what conversations they may have sparked. I am convinced that arts-based methods can help to deliver powerful messages to public audiences when these methods, and the artifacts and events they produce, are employed in well-considered, and rigorous ways.
Bibliography
AIDS 2016. (2017). The AIDS Quilt Project: A celebration of South Africans. [online] Available at: http://www.aids2016.org/Media-Centre/The-Latest/Blog/ArticleID/45/The-AIDS-Quilt-Project-A-celebration-of-South-Africans [Accessed 20 Aug. 2017].
Clara (2016). AIDS Conference Quilt. Izwi Lethu, [online] p.7. Available at: https://issuu.com/move.methods.visual.explore/docs/izwi_lethu_issue_11_final__interact [Accessed 21 Aug. 2017].
Ndaki, K. (2017). Quilts celebrate South Africa’s journey. [online] YouTube. Available at: https://www.youtube.com/watch?v=vxiUTr2WJ_Q&feature=youtu.be [Accessed 20 Aug. 2017].
Unaids.org. (2017). Quilts celebrate South Africa’s journey | UNAIDS. [online] Available at: http://www.unaids.org/en/resources/presscentre/featurestories/2016/july/20160722_quilt [Accessed 20 Aug. 2017].