07.16.18

The incivility of (too-) civil society in the tuberculosis response

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Anyone who knows the world of the global tuberculosis response knows, too, its refrain: “We must do for TB what we did for HIV!” It is less rallying cry than lament. 

Those of us who form part of “civil society” at the international level in the TB world attend the big TB conferences, but mostly we needn’t—we could close our eyes and conduct their movements from our desk chairs (for too many of us sit in desk chairs.) Our “advocacy” is scored in advance. We join “civil society advisory committees.” Fly to Geneva. Sit on panels in New York. Even our protests would better be called parades, sponsored as they often are by the very powers that make the policies against which we ought to fight. Ours is sound without fury signifying nothing.

Here are three observations as to why civil society in the global TB response is not that strength which in old days moved earth and heaven and what we must do now if we are to strive, to seek, to find, and not to yield.

Nobody knows what we are talking about

We who advocate for human rights in the global TB response owe a confession, even if only to ourselves: nobody knows what we are talking about. Indeed, many of us don’t even know what we are talking about.

The global TB response has adopted with glee the language of “human rights” but for too long that language has conveyed no meaning. The words have thus been commandeered to a cosmetic function to cover the inadequacies of the TB response rather than determine its content. We have allowed the words to become vacuous and so now must reclaim them and reload them with the freight they ought to carry.

One way we do this is to name and fight the trend in international spaces that seeks to divorce the language of “human rights” from legal rights and obligations sourced in international and domestic law—and critically, mechanisms for redress when those rights and obligations are not met.

Civil society can no longer campaign for sentiment. We must throw thunderbolts. We must articulate human rights in the concrete including by leveraging law and legal remedies. If human rights do not deliver the freight we need – pills, technology, human resources, due process – we would do better to ignore them than parade an empty concept.

We don’t know who we are

The term “civil society” is purposely nondescript. Organizations who fight for justice and accountability are not the same as those who provide direct medical services or conduct scientific research. All are necessary, but it is dangerous to fail to distinguish those who act essentially on behalf of the state and those who seek to hold the state accountable.

Organizations that receive millions in funding from domestic and international sources to provide services or conduct research rarely bite the hand that feeds them. Yet, too often in the global TB context they posture themselves as advocacy organizations—and their weight pulls down the message and efficacy of independent organizations who fight for accountability.

Service providers crowd community hearings and civil society panels. They report, as they must, on their successes yet fail to contextualize those successes in the overall failure of the institutions that fund them. It is not by accident that they feature so prominently in the “protests” turned parades that proclaim loudly demands for nothing at international TB conferences. 

We must work together but know that we are different and refuse to be treated as the same. Organizations that are primarily service providers have a role to play in advocacy. It is to lift up and support the leadership of organizations who have the requisite independence to fight for accountability. 

We are not organized and we are not local

The global TB response has thought globally yet failed to act locally. There is a whole field of “TB advocacy” comprised of little more than professional attendees of international conferences. Its practitioners travel the world to repeat the same presentations and panels for years on end. They are held out as community representatives yet have no community to which they account.

Some find themselves in this role because they are greedy or lazy or attracted to the shiny baubles of international life. But the field also traps once-great activists who because they come from poor communities cannot turn down a salary fed by the misdirected river of funding flowing to organizations who produce glossy publications and sharp PowerPoint presentations rather than those fighting for their lives on the ground.

These people cannot organize civil society. That work must begin in communities, for true organizing begins in personal relationships, and flow upward to coordination between those communities at the international level. One way we make this happen is to demand that funding go not to those organizations that are shiniest but to those that are grittiest. It is unconscionable that organizations like the Treatment Action Campaign, for example, fight every year to stay open whilst on any given day their annual budget flies first class to the next talk shop. 

May our dungeon shake and our chains fall off

I have identified three conditions that lock global TB advocacy into inefficacy. The apex condition from which these others flow is this: we are chained by comfort. We are not angry enough. We are too civil. And our overabundance of civility enables a world so uncivil as to be barbarous.

The United States military budget for 2018 is $700 billion. The whole world combined spent $6.9 billion in 2017 on TB care and prevention. 25,600 people died in terrorist attacks in 2016. TB killed 1.7 million people that year. Yet we plan to spend on the military in three and a half days what the entire world spent on TB prevention and care in all of last year.

The US spent $316 million in public funds on TB research and development in 2016. The US president illegally dropped over 100 missiles on Syria on April 14, 2018. The missiles alone cost at least $165 million. This is the world’s deadliest infectious disease for which almost no new treatments have been approved in over 50 years leading to the rise of drug-resistant strains against which we do not have tools to fight. There is nothing civil about this brutality.

There are organizations and communities that are not chained by comfort: so urgent is their need for change that they have organized to disrupt civility. They are not perfect, organizing for fundamental change is messy business. But they persist and we must learn from them and lift them up.

The rest of us have agreed to engage with civility. We have consented to not make things personal—but it is deeply personal when someone makes policy or takes action that everyone knows will kill the people we love. We beg for scraps when we need to demand rights. We must begin again to fight as if our lives depended on it. Because they do. Let us then be uncivil.

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