Day 2: Social change. agency. leadership and power

Activity 4: Social Change, Power and Collective Agency

Day 2: Social change. agency. leadership and power

Activity 4: Social Change, Power and Collective Agency

3 hours 30 minutes


To help us to:

  • Reflect on South Africa’s complexity, in the period of the height of the HIV/Aids pandemic between 1992 and 2006
  • Deepen Fellows’ learning about, and understanding of the concept, experiences and practice of social change and its application to health equity
  • Look at strategies for social change, and consider ways to achieve it

Task 1
Group work: South Africa – The 7, 14 and 21 Up Videos

2 hours

The South Africa ‘Up’ series from the international news media house Aljazeera, follows the personal journeys of a diverse range of young South Africans, born in the apartheid era. This is a longitudinal series tracking their lives in the democratic South Africa. They were first filmed in 1992 when they were seven years old, again in 1999 when they were 14 years old, and then again in 2006 at 21 years old. Some are juggling work and others, unemployment, families, and or studies.

The life journey of these young South Africans, from different race, gender and class backgrounds shows the dynamics of South African society post 1994. What did political transfer of power bring about, and for who? How does this change manifest itself? 

Working in three groups, you will watch one video from the Up Series in your group. Each video is 47 minutes long. Before you watch, read through the questions that you will be expected to discuss in the second hour. Have your journals to hand, to take notes as you watch together:    

Group 1: 1992 7 years old 
Group 2: 1999 14 years old 
Group 3: 2006 21 years old 

After you have watched the video, you have 35 minutes to answer the following questions in your group:

  1. What are the social factors that contribute to good health that you see in the videos and who has those?
  2. What are the social factors that contribute to poor health that you see in the videos and who has those?
  3. What do you see as the social and political context in the film, at your seven-year mark?
  4. What kind of leadership and social mobilisation is needed to ensure health equity in this context?

In a 20-minute plenary discussion, the facilitator will lead a discussion that draws out the key arguments made on each of the questions, and what the similarities and differences are, and why. The discussion on the last question, will take us directly into the theme of the second part of this activity. 

Task 2
Group work: The Case of TAC

1 hour 30 minutes

The Treatment Action Campaign (TAC) is a South African HIV/AIDS activist organisation which was founded in 1998. TAC is rooted in the experiences, direct action tactics and anti-apartheid background of its founder.

This campaign provides an example of a social movement that mobilised for HIV and AIDS treatment during the period discussed in the videos you have just seen. It provides an example of a successful mobilisation against the state and pharmaceutical companies, pointing to the critical role of community action for social change.

Working in a new group that you are allocated to, read the case study on the TAC on the pages that follow. Then answer the following questions together, and be ready to share key features of your discussion in plenary:

  1. What lessons can we take from this example in relation to social change, agency and leadership?
  2. What would you have done differently, were you in the leadership of the TAC at this time?
  3. What other kinds of responses to HIV from other organisations or social actors are you aware of? Discuss at least five and place them on a continuum of change from responsive, ameliorative, adaptive to disruptive.
  4. What do you know about the TAC today and how it positions itself? 
  5. What does this say about the kind of action that we need to take as social change activists and leaders for health equity?

Each group will be asked to share a different answer in plenary. We will then consider together what the key leadership lessons are from this case study and our discussion, for working for social change.

A Case Study of the Treatment Action Campaign

Out and open in the streets: TAC as a post-apartheid, rights-based and patient-driven movement

An extract from a 2005 paper on the TAC, by Mandisa Mbali

In earlier sections of this paper I have tried to show how TAC shares historical continuities with late 1980s and early 1990s anti-apartheid gay rights activism such as the emphasis on universal human rights based discourse and early openness of such activists about their HIV status. However, it is important to note that despite its roots in early AIDS activism in the late apartheid and transition eras TAC is also fundamentally a post-apartheid political creature, which has used entirely new political and legal spaces created in post-apartheid South Africa. There are two main historical developments post 1994, which I wish to point to which have fundamentally contributed to TAC’s emergence, agenda and the strategies it adopted: the development of powerful combination antiretroviral drug therapy (HIV treatment) [71] and the adoption of South Africa’s democratic Constitution enshrining socio- economic rights.

As has been discussed above, TAC was formed in 1998 by Zackie Achmat, partially in response to the death of a stalwart of the gay liberation movement, Simon Nkoli.

Simultaneously, the stoning to death of openly HIV positive AIDS activist Gugu Dlamini for revealing her HIV status, mobilised HIV positive activists in the KwaZulu-Natal region, to begin lobbying for equal HIV treatment access, which in turn linked them with the Treatment Action Campaign simultaneously being formed by anti-apartheid, gay rights activists in Cape Town. [72]

TAC aimed to widen access to anti-retroviral drugs for prevention of mother to child transmission (MTCT), post-exposure prophylaxis following sexual assault and for use in combination drug therapy. TAC is not entirely historically unique, like the AIDS Consortium in the early 1990s, it is a broad-based network, which includes unions, churches, gay rights groups, health-workers and doctors. Also in common with the AIDS Consortium it frames its campaigns in terms of rights-based discourse. TAC has also used similar tactics, such as openness about HIV infection, litigation, and attracting media attention for its campaigns albeit, on a much grander scale involving mass-openness, the international media and the Constitutional Court. This demonstrates further the value of seeing recent events in the context of the history of AIDS activism in the first decade of the epidemic.

TAC’s post-apartheid campaign for wider access to HIV treatment was necessitated by two factors blocking access to HIV treatment: pharmaceutical industry profiteering through protection of patent monopolies and the rejection of the efficacy and safety of HIV treatment by several key figures in government, such as the President and Health Minister, due to their adherence to AIDS denialism.

The new, powerful, and very expensive HIV treatment worked by suppressing viral replication and allowing for immune system recovery. This scientific breakthrough, which was announced in 1996, changed HIV from an irrevocable terminal illness to a manageable chronic condition in the wealthy Northern countries. However, the pharmaceutical industry kept the price of these medicines unaffordable in developing countries in the South with a high HIV prevalence, such as South Africa, through abusing their patent monopolies.

In 2001, the Pharmaceutical Manufacturers Association representing 47 multinational pharmaceutical companies took the South African government to court to block the passing of the Medicines Act of 1997, which would have allowed for the production and importation of cheaper generic essential medicines, such as antiretroviral drugs in South Africa. TAC supported the government in the case acting as ‘friend of the court’ and helped to mobilise local and international activist support and global public opinion in favour of the government. Due to international public pressure and the negative perceptions the case generated about the pharmaceutical industry, the case was dropped. TAC subsequently successfully pursued action against industry abuse of patent monopolies to inflate prices at the Competition Commission against GlaxoSmithKline (which produces antiretrovirals such as AZT and 3TC) and Boehringer Ingelheim (which produces Nevirapine).

However, wider treatment access was also blocked by the bitter and drawn-out struggle between government and TAC activists over government denialism and HIV treatment access, which lasted from 1999 to 2003. As I have documented elsewhere, President Thabo Mbeki, supported by Health Minister Manto Tshabalala Msimang questioned HIV as the viral cause of AIDS, the accuracy of HIV tests, and the safety and efficacy of HIV treatment, a set of beliefs that AIDS activists referred to as denialism. [73] This denialism was driven by Mbeki’s belief that AIDS was a post-colonial, racist conspiracy to discredit African sexuality. [74] Government endorsement of AIDS denialism, due to its rejection of the safety and efficacy of combination anti-retroviral drug therapy, was in turn a crucial factor blocking equal access to combination anti-HIV drug therapy for people living with HIV. [75]

While TAC may not be the first instance of rights-based, patient-driven AIDS activism in South African history, it is certainly historically unique in terms of its militancy. On the back of its success in forcing the government to roll out Nevirapine for prevention of MTCT, at its 2002 Congress it decided to push government to adopt a National Treatment Plan to roll out anti-retroviral combination drug therapy in the public sector. Through its trade union federation ally, the Congress of South African Trade Unions (COSATU), it forced its Plan onto the negotiating table of National Economic Development and Labour Council (NEDLAC), a major socio-economic policy negotiating forum involving government, labour, business and civil society. When government withdrew from the negotiations in 2003, TAC embarked on a civil disobedience campaign, where its members volunteered to be arrested for non- violent protest. [76]

TAC’s militancy in the post-apartheid era, as expressed in its civil disobedience campaign can be partially explained by the fact that medical breakthroughs in treatment and prevention of HIV increased the stakes in fighting AIDS related discrimination. Whereas previous struggles were about confidentiality and equality, in the struggle for treatment life itself was at stake, which meant more radical strategies had to be adopted. In 1999, Edwin Cameron, by then a supreme court of appeals judge revealed his HIV positive status to protest at the fact that only a tiny minority of extremely wealthy people living with HIV, such as himself, could afford drugs: he had essentially bought something which he thought should be freely available to all, the right to live. [77]

For many TAC activists, fighting for the right to live through access to treatment made openness worth the risks it entailed. The brave openness of activists like Zackie Achmat and Justice Edwin Cameron put a ‘human face’ on the epidemic and made the arguments for treatment access as basic an appeal at an ethical level as “a person dying of starvation asking you for bread”. [78] But as Achmat argued from the outset, generation of compassion or pity has not been TAC’s number one goal, it is the realisation of the rights to life and health for HIV positive people, as equal citizens. [79] Similarly, TAC is unique in its ability to use the post-apartheid Constitution, enshrining as it does socio-economic rights, such as the right to access to healthcare, as a powerful legal and political tool. A tool which it successfully used in a 2001 Constitutional Court challenge which forced the government to roll-out Nevirapine to prevent mother-to-child-transmission. [80]

At the time of writing, in November 2004, TAC had successfully forced the government to relent on developing a National Treatment Plan to provide anti-retrovirals in the public sector. Critics such as TAC argue that the government appears to lack the political will to provide adequate infrastructure and human resource development required to rapidly roll- out the treatment and make the plan a success. TAC’s most recent Right to Know Campaign has also critiqued the government for not being transparent about its patient targets and the timetable for the roll-out. Despite the roll-out’s ongoing shortcomings, in forcing the government to develop a National Treatment Plan and the roll-out of HIV treatment, TAC has been one of the most successful post-apartheid social movements.

Concluding remarks

Placing TAC in the longer history of rights-based, patient-driven AIDS activism can help to explain its political nature in several crucial ways. Firstly, the fact that anti-apartheid, gay rights activists played such an important role in early patient driven AIDS activism helps to explain why the movement is led by a former anti-apartheid gay rights activist. TAC’s emphasis on universal human rights also mirrors the location of gay rights within universal human rights discourse by anti-apartheid gay rights activists in the late 1980s and early 1990s. Also, the emphasis of TAC activists such as Achmat on fighting for treatment ‘from within’ ANC structures mirrors Nkoli’s gay rights strategy in the 1980s and 1990s of pushing for gay rights from within UDF and later ANC structures. Similarly, Achmat’s call for TAC’s campaign to be based on openness was not the first time the strategy had been used. Anti- apartheid gay rights activists living with HIV had first begun to reveal their status at political forums such as NACOSA to push for AIDS policy to be rights-based in the early 1990s.

What is new and specifically post-apartheid about TAC are its demands for access to new drug therapies which did not exist until after 1996 and its use of South Africa’s new democratic constitution to forward its aims. Furthermore, it is far more militant than any earlier forms of rights-based, patient-driven activism and it has had far greater success in encouraging mass-openness.

As legally, philosophically and politically contingent as rights-based discourse may be, TAC has powerfully used it to push for policies that have literally saved lives. Human rights-based discourse has also been used differently by AIDS activists over time in South Africa: whereas it was initially invoked mainly to promote confidentiality, it’s now used by a movement led by openly HIV positive activists to push for access to HIV treatment. This shows that the invocation of human rights based discourse by civil society is contested, changing and context bound; which is not to discount its potential and a political strategy. This history of patient-driven, rights-based AIDS activism also demonstrates that in a Habermasian sense communication in civil society sustains and maintains the public sphere and gives meaning and substance to first generation political rights. Just as AIDS activists in the transition era tested the lobbying and advocacy potential of new transition-era negotiating spaces such as NACOSA, TAC has taken its fight to new democratic spaces such as the Constitutional Court.

It is unclear whether TAC’s success in invoking rights-based discourses in new democratic spaces will be replicated by other new social movements pushing for the realisation of socio-economic rights. For instance, will they be able to marshal the kind of funds and legal support TAC has used in its court challenges if they wish to pursue similar action? What sort of success could new social movements which contradict aspects of the Constitution, such as the Landless Peoples’ Movement, which argues for expropriation of land (which contradicts with the property clause) expect in such court action? Certainly, TAC reveals how socio-economic rights on paper can in certain instances be translated into rights in reality through civil society activism.

A comprehensive oral and archival history of TAC has yet to be written, however, as I have tried to show, there is a longer political history of rights-based, AIDS activism by anti- apartheid gay rights, HIV positive patients, a legacy which has formed the socio-political basis for TAC’s patient-driven, contemporary activism for the realization of the socio- economic right to access to health care. The history of rights-based, patient driven AIDS activism demonstrates that history can be made through the exercise of agency in struggle. However, it remains to be seen whether AIDS activists exercising their agency will continue in the epidemic’s future to successfully push for further rights-based AIDS policy gains and how successfully the roll-out of HIV treatment will proceed.

Last updated: May 2022