Activism and Civil society: what it is and what it’s not

By – Mark Heywood

2016 is a year of AIDS anniversaries.

It is the 20th anniversary of the International AIDS conference in Vancouver where the successful use of combination antiretroviral therapy for the treatment of HIV was first announced.

It is the sixteenth anniversary of the landmark International AIDS Conference in Durban where Nelson Mandela defied Thabo Mbeki noting that “in the face of the grave threat posed by HIV/ AIDS, we have to rise above our differences and combine our efforts to save our people” and calling for “large-scale actions to prevent mother-to-child transmission”.

It is the tenth anniversary of the Conference in Toronto which saw Stephen Lewis, then the UN Special Envoy on AIDS in Africa, denounce the South African governments deadly and denialist response to AIDS as “more worthy of a lunatic fringe than of a concerned and compassionate state” and as “wrong, immoral [and] indefensible”.

“Activism constitutes a global public good, deserving investment commensurate with the role it plays in improving health outcomes.
“Activism constitutes a global public good, deserving investment commensurate with the role it plays in improving health outcomes.

At each of these conferences civil society’s loud, unapologetic truth talking activism was crucial in breaking the log-jam, as it has been through the epidemic.

In the 1990s activists in the United States had organised angry and effective demonstrations to speed up research into treatment. They started the tradition of exposing pharmaceutical company profiteering from AIDS. When the treatment breakthrough was announced they refused to be pacified, immediately turning attention to the prohibitive cost of treatment for people with HIV in developing countries. One activist famously warned that “if AIDS treatment was a glass of clean water, 90% of people in developing countries who needed it would still not be able to access it.” On the back of this unpalatable truth AIDS activism went global.

Ten years later, in Toronto TAC activists trashed South Africa’s country exhibition to protest that our then Minister of Health, Manto Tshabalala-Msimang, had displayed beetroot and garlic cloves as treatments for people with HIV. We protested the death of a prisoner with AIDS and called on the world to show its rejection of AIDS denialism.

A few weeks later, back home in South Africa, talks began between TAC and the Presidency that led to the restructuring of the SA National AIDS Council (SANAC) and the 2007-2012 National Strategic Plan on HIV, TB and STIs that set a target of two and a half million people on ARV treatment by 2012.

These were examples of the uncompromising activism that has been the engine of the AIDS response for 30 years. Its importance is acknowledged in the UNAIDS-Lancet Commission report Defeating AIDS – Advancing Global Health * where it is stated:

“Activism constitutes a global public good, deserving investment commensurate with the role it plays in improving health outcomes. The independent, sometimes confrontational, legacy of activism should be revitalized and nurtured because it provides political incentives for attention and support to AIDS and health.” (my emphasis)

The report also recognises that:

“A global health movement can transform a lofty set of global goals into community realization. Civil society actors will need to find new ways to organise activism, while governments and international organisations must create conditions for activism – including direct investments, a free and open media, protection of rights to speech, and assembly to raise inconvenient truths – be they related to emerging pandemics or environmental health issues.”

But what is activism? And what is independent? In fact, what is this mysterious creature called civil society that everyone talks about? These questions need honest answers. They are also crucial in the context of a growing recognition by some donors, PEPFAR included, that activism must be funded.

They need honest answers because in recent years the smell of dollars and per diems has drawn a range of charlatans under the broad umbrella of civil society. Frequently these are people whose actions and motives cause division and confusion within communities as well as amongst governments and donors. They are also a waste of money.

So how to distinguish independent activism from its pretenders? I would argue that it has five intrinsic characteristics:

It is connected to impoverished and marginalized communities – the people still most at risk of HIV and AIDS. It does not usurp the voice of these communities but empowers and amplifies it. Activists come from and constantly return to their communities. They should be seen to be accountable, mandated and to share what they learn (and what they earn).

Activists are self-sacrificing rather than self-advancing. They do not use their positions to solicit jobs or cosy-up to power.

Activism is not a job. But it must be professional. Activists are thirsty for knowledge that can advance our cause, we follow evidence and base advocacy on facts.

Independence means not being beholden to or afraid of any power, public or private. It means independence from private companies and from governments, the willingness to speak out without fear or favour. Activists are not anti-government. In fact we try our best to build effective governments because governments have the power and the duty to save our lives and ensure our dignity. But democracy is our oxygen and we will protect or fight for it.

Activism is based on the continuous promotion of human rights, equality and social justice. This is not only something it does externally, but it must live its practice. It can’t tolerate racism, sexism or homophobia.

Put simply: Independent civil society activism is vital to the success of ending AIDS. It’s crucial to 90-90-90. Let’s put it another way: the world will not end AIDS or TB without activism.

In juxtaposition to activism there is slacktivism. Slacktivism is the opposite of almost all of these. In South Africa and elsewhere slacktivism has smuggled its way into the AIDS response by wearing camouflage. From my observations these are some of its features:

It likes proximity to political power. It seeks public stages and photo opportunities, mainly so it can advance its own self or organizational interests.

It creates organisations with rights sounding names, it talks about “our people”, and likes to claim to be the sole representative of people living with HIV.

But it is neither transparent or accountable to any community or constituency.

It loves to travel – by business class whenever possible. One South African ‘leader’ made 18 international trips in one year.

Finally, when it is challenged it claims that divisions are about territory or jealousy, giving the impression that petty-division is inherent to civil society organization. It is not. Genuine activism doesn’t need to fight over territory – the territory of need and human rights violations is bigger than us all.

As we consider the challenges that face the next phase of the AIDS epidemic we have to be honest with ourselves. Frank talk about these issues is not about causing division. It is about ensuring the legitimacy of NGOs and social movements, of Country Co-ordinating Mechanisms (CCMs) and civil society delegates to the important institutions that have been created to advance the response to AIDS and TB, in the eyes of the ordinary people. It is about ensuring that AIDS money is spent on AIDS.

Civil society must accept and embrace the same standards that we demand of others, particularly transparency and accountability. We call for an activist Code of Conduct, developed by ourselves, that donors can use as a basis of assessment.

TAC believes we have done our best for the last 17 years to hold ourselves to these standards. We are not without fault and we have not avoided mistakes. But when we have encountered corruption in our ranks we have expelled it. We have maintained openness. Our books have been audited every year. Our leaders remain elected and accountable to our members. Our organization is open for inspection. We call on all civil society organisations to embrace this standard.  

Mark Heywood is a co-founder TAC, Director SECTION27

*Lancet, Vol 386: 9989, July 11-17, 2o15, 171-218



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