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Calling HIV-related Stigma What It Is: Racism, Classism, Misogyny

The Robert Carr Memorial Lecture at the XIX International AIDS Conference, delivered by Stephen Lewis, Co-Director of AIDS-Free World, July 25, 2012, Washington, D.C.

Before I came to this session today—this morning in fact—I watched, again, Robert Carr’s now-famous “Bullshit” speech at the MSMGF meeting in Vienna in 2010. No matter how many viewings, it’s really memorable; quite astounding in fact.

It combines a glimpse of all those facets of Robert’s work and persona compressed into a brilliant fifteen minutes of rhetorical passion: his decade and more of struggle in Jamaica and the Caribbean; his pride in the work of J-FLAG and CVC—the Caribbean Vulnerable Communities coalition; his insensate rage over the way in which societies preach the mantra of human rights and exclude whole groups of people from access to those rights; his impatience with the United Nations, with institutions, government departments, parliamentarians; his scorn for the intellectual pretense of so-called religious values; his agitation over the nonsense that homosexuality is a western invention; his frustration with the paltry, demeaning resources provided to marginalized groups; and above all, his recognition that AIDS will never be subdued while this pattern of inequality continues to prevail.

Let me say that I feel intensely privileged to deliver this inaugural Robert Carr lecture. I can’t claim to have known Robert as well as many people in this room, but I was drawn to him, as all of us were drawn, by his resolute and principled presence, that calm, rooted sense of conviction that suffused his every waking moment. It’s no surprise that this conference should be honoring Robert is so many ways, honoring him for the reach of his global contributions, setting up the Robert Carr Networks Fund, enshrining his beliefs in what will be forever known as the Carr Doctrine.

He loved, and was loved. There was such charm, grace, integrity, wit, laughter, and above all, intelligence, that it made Robert everyone’s friend. You felt better in his presence; more secure, more confident that somehow the world’s perversities would come to a close.

I’d seen him, on different occasions, in Jamaica and Trinidad, meeting with small groups of LGBT activists … listening, encouraging, embracing, always reassuring.  I’d seen him at the Commonwealth Secretariat in London explaining, carefully, patiently, the cultural layers of stigma and discrimination to people of astonishingly limited comprehension; I saw him in Amsterdam joining with activists to solve an ongoing funding crisis, I sat with him and ICASO colleagues in New York talking anxiously of the situation at the United Nations, I watched him on a video screen at the Caribbean regional dialogue of the Commission on HIV and the Law, where his every word was absorbed as holy writ, in the best sense, by everyone assembled.

There was not a forum where Robert was uncomfortable. He was ever-persuasive. He was never intimidated by place, or rank or circumstance.

I’ve wondered to myself what he might think of this conference, and this moment in time. In the Vienna speech, he made much of the discrepancy between the real world and what would happen at the conference itself. That seems to me a good starting point. Interestingly, he was contemptuous of both the real world and the conference … hence the use of the word “Bullshit” to convey the full force of his feelings.

We’re at a climactic human rights moment in the battle against the pandemic. The struggle of the so-called marginalized or high risk groups … ‘key populations’ in the AIDS vocabulary … is fraught with enormous hypocrisy. The smooth ever-repetitive mantra of men who have sex with men, sex workers, injecting drug users, transgendered persons, prison populations, migrants, seems to suggest that if you say it often enough, somehow that’s sufficient. The endless refrain becomes the endless answer.

But the point surely is that you can’t keep invoking the phrase ‘human rights’ as a mask behind which to hide the world’s behavior. International figures and UN officials can’t keep going to African countries and complimenting the President or the government on their progress on HIV and AIDS, while the country maintains homophobic laws or has gay men in jail. You can’t go to a meeting of the African Union and congratulate them on the progress against the virus of AIDS when the virus of homophobia infects the room.

On one of the introductory pages of the just-tabled UNAIDS report, you have a full-page picture of the Chairperson of the African Union, who happens to be the President of Benin, a country with anti-gay laws on the books. The rationalization, as always, is that the laws aren’t applied … spare me the intellectual claptrap. Laws against homosexuality, whether applied or not, create an atmosphere of intolerance and fear, of stigma and discrimination that drive the pandemic.

What are we supposed to believe? That an AIDS-free generation is free for some but not for all? That we’ve found yet another phrase besotted with hypocrisy? It’s the kind of double standard that drove Robert Carr to distraction.

As with everyone else at this conference, I was much cheered by many of the words of Hillary Clinton. But I have to ask myself, how do you reconcile an AIDS-free generation with a terrifying pattern of criminalization of transmission across this country, visited significantly on gay men? How do you reconcile an AIDS-free generation with the treatment of injecting drug users in jail; indeed with the often pernicious and brutal treatment of injecting drug users writ large? How do you reconcile an AIDS-free generation when sex workers and injecting drug users are denied access to the conference?

It isn’t enough to applaud—reverentially and adoringly, with an almost groveling pastiche—treatment as prevention when it’s no prevention for many and treatment for few. You don’t let the principle of exclusion slide by without comment just because some dollars—relatively few, I might add—are thrown into the mix.

I’m of the naming and shaming school. I want to see President Museveni of Uganda excoriated at the Human Rights Council, excoriated in the General Assembly of the United Nations, excoriated by UNAIDS, excoriated by some brave country at the African Union … it’s great that he was phoned by Hillary Clinton and Gordon Brown when the vicious legislation was moving through the Ugandan parliament, but that’s never enough: David Kato is dead, and the potential legislation lives. President Museveni could put an end to it all with the snap of a finger, but that snap will only come with sustained embarrassment before the world community.

How would Robert Carr have felt about such an approach? Very comfortable: we were together at the Commonwealth Conference in Trinidad when these strategies were discussed.

And let me add that I’m not confining the argument to homophobia. I feel—I’m sure that Robert would have agreed—that President Putin is getting away with murder and the world seems to care not one whit. To be sure, Russia is condemned over Syria; that’s easy, and the High Commissioner for Human Rights has criticized the Russian Federation for suppression of dissent and of civil society. But there’s not a word about the ugly and unconscionable treatment of injecting drug users. It is well to remember that Russia has an exploding HIV epidemic; the fastest-growing in the world, and no one takes President Putin personally to task in a way which would at least put him on the defensive and possibly save lives.

What I’m about to say, I’ve said a hundred times before, but it remains germane. A similar silence, from the United Nations and the international community, surrounded Thabo Mbeki as he refused to roll out antiretroviral treatment, watched his people die, and in so doing, committed crimes against humanity. The international community is at it again. But this time, the targets are marginalized groups. And I repeat:  generalized abstractions about the human rights of vulnerable communities doesn’t cut it. Throwing in a few sonorous supplications at the end of a state visit doesn’t cut it.

We are drowning in statutes, criminal law, legislation, public statements that demonize whole swaths of humankind. What Robert Carr wanted is that informed condemnation, leading to change, would reverberate through the world community.

In the process of demonization, we give credence to other dimensions of stigma that are mentioned in the titular description of the lecture: racism and classism. It’s impossible to take a hard look at the state of HIV and AIDS in the United States—indeed, in Washington itself—without seeing race at its core. Just today, there was a press conference held to profile the terrifying increase in AIDS amongst black homosexual men. More, there is an indelible tie with poverty that is unmistakable. I know it is felt that the recently-announced Presidential plan to address HIV in the United States represents significant progress, but we’ve waited a very long time, and the lineups for treatment are still, in some states, unendurable.

I’ve always felt, bitterly felt, particularly in the days of my work as Envoy on AIDS in Africa, that subterranean racism played an odious role in the slow, halting response to the pandemic. It always felt—I feel it still today—that somehow Africans were seen to be expendable, somehow not worthy of the best possible interventions.

This vile double standard continues to persist. In the United States, in Canada, in Western Europe, we start treatment at very high CD4 counts … in some jurisdictions we start treatment the moment a person tests HIV-positive; in Africa we wait until the CD4 count declines to 350 or, in some jurisdictions, even less.

On the face of this earth, there is no argument about money that justifies creating a category of ‘lesser mortals.’ When Robert said “Bullshit,” everyone in the room said hear, hear: we’ve always had the haves and have-nots rooted in resources, and poverty, and conflict, and disease. But we’ve never had a disease that preys so opportunistically, and is fed so opportunistically by racism, sexism and classism.

The principle of exclusion leads me to an aspect of Robert’s work that is rarely mentioned. In biographic notes, it emerges that when he was Executive Director of Jamaican AIDS Support for Life, amongst the various communities with which he engaged, were the hearing-impaired. That’s extraordinary; there’s just nothing that escaped Robert’s attention.

I mention it because people with disabilities are another huge category of virtual exclusion from the world of HIV and AIDS. Even though people with disabilities, so often impoverished and isolated, are vulnerable to infection; even though they’re exceedingly at risk of sexual assault; even though there is now a Convention on the Rights of Persons with Disabilities, supposedly guaranteeing the highest attainable standard of health; even though the World Health Organization has now determined that 15% of the world’s population is disabled … that is to say, one billion people; and even though they predictably suffer stigma of unrelieved proportions … the intersection of HIV and Disabilities is almost never acknowledged. In fact, in the most recent report of UNAIDS, there is no section on Disability whatsoever … one of my colleagues was unable to find even a mention of the word.

Frankly, it’s outrageous. If I may be so direct as to mention the NGO with which I work, AIDS-Free World (and by the way, we collaborated with Robert Carr, particularly through Maurice Tomlinson, on a number of Jamaican initiatives together) … AIDS-Free World held a pre-conference Disability and HIV Leadership Forum on Saturday on Gallaudet campus, the University for the Deaf, here in Washington. We had twenty-three young disabled activists from twenty countries, people with vision, hearing, and mobility disabilities, accompanied in many instances by personal assistants (with a cosmic range of sign language interpreters in several languages), and they spent the entire day immersed in the study of techniques of advocacy to advance their cause in their respective countries.

As in every other instance of marginalization, they have to fight their way into an AIDS-free generation, but at least they emerged with a ten-point Declaration setting out their demands. That fits nicely with Robert Carr: throughout his speech he insisted, time and time again, that we make demands.

Now all that I’ve reconnoitered thus far, interesting though some of it might be, doesn’t touch on perhaps the most unusual dimension of Robert’s realm of work and advocacy. Robert was a feminist; an unremitting, unrepentant, unabashed feminist. It’s rare, you will admit, to have such a combination of traits and convictions embodied in one person, especially a man whom society has attempted to exclude. His soul was open to the world.

Given that misogyny is part of the title of this first Robert Carr lecture, it emboldens me to say that the situation of women in the pandemic remains appalling. It’s never easy to get past the monolith of male power. Lest you feel that I exaggerate, there was a fascinating example of that on Monday evening.

Cloistered in the confines of the World Bank, but available on the big screen in Mini Room 1, was a so-called Landmark Debate titled “Global Health Funding Allocations for HIV/AIDS,” sponsored by the World Bank, USAID and The Lancet. The participant speakers in the compendium of notables were as follows—I won’t provide their occupational credentials, but you’ll know many of them—Dr. Jim Kim; Dr. Rajiv Shaw; His Excellency Mr. Festus Mogae; Dr. Charles Holmes; Dr. Richard Horton; Dr. Roger England; Dr. Mead Over; Dr. Jeffrey Sachs; Mr. Michel Sidibe; Dr. David Serwadda, and Ambassador Eric Goosby.

Eleven speakers; eleven men.

Now I don’t for a moment diminish the formidable intellectual prowess of the males there assembled. But I do lament that there just aren’t any women up to equivalent standards. At least four of the participants were academics, so that’s understandable: there are obviously no women of scholarship from whom to choose. But even though the rest were a gaggle of CEO-types and senior bureaucrats, you would have thought it might be possible to find a female facsimile here or there. But apparently not. I can’t help but recall a conversation with a very, very, very senior member of the UN establishment, shortly after Kofi Annan had appointed a High-Level Panel on System-Wide UN Coherence with twelve men and three women. My colleague and I asked him why the gender imbalance was so stark. “Oh,” he said, “we asked Gro Brundtland, but she was busy, and frankly there are just not enough women around who know how to handle such a job.”

And in a nutshell, that’s the problem. It never changes. I could give you umpteen additional examples, chapter and verse—some, believe it or not, more extreme than Monday night—they all simply accentuate, not so much misogyny as an assumption of male authority that has no place in the modern world but is everywhere extant in the modern world.

Another example, rather more distressing because of what it reveals, is the global plan, launched at the High-Level meeting at the United Nations last year, “To Eliminate New HIV Infections Among Children by 2015 and Keeping Mothers Alive.” The people on the inside of this plan know—will never admit but know—that the Keeping Mothers Alive part was an eleventh hour insertion because women are always overlooked. As a matter of fact, if you take a look at the UNAIDS website today, it highlights the Global Plan to Eliminate new HIV Infections Among Children by 2015, giving only a subsidiary cut-line at the end for Keeping Mothers Alive.

This has been one of the scandals of the history of AIDS. Preventing vertical transmission of the virus from mother to child is perhaps the easiest preventive intervention there is, but we marked time between 2000 and 2005, losing five precious years, and it is only latterly that we’ve suddenly begun to emphasize the importance of the mother.

Whenever women come into play in the pandemic, it’s a colossal struggle to give them the primacy they must have. We’ve heard ad nauseam that the pandemic has a woman’s face, but we’ve heard hardly at all that the pandemic has a woman’s response. The disproportionate number of women who are infected, the absence of sexual autonomy and gender equality, the contagion of rape and sexual violence that continues to spread the virus … all of it will doom infected women to an ominous future unless there’s a revolution in attitude. And that revolution is not merely behavior change, primarily among men on the ground, it’s a revolution in urgency and commitment amongst those who call the shots in the citadels of power.

I’ve always believed in the use of the word femicide when describing rape in the Congo; it seems to me that misogyny is absolutely applicable when describing the course of the pandemic for women.

That’s why Robert Carr’s feminism was so important. He understood that every group that’s been consigned to the periphery of society is inevitably connected … connected through prejudice, through fear, through stigma.

I sometimes despair of getting rid of the stigma. It haunts every member of every marginalized group, and does so in a multiplicity of ways: in the family, in the schools, in the ownership of property, in the rights to inheritance, in the community, in the market, in the workplace. It’s a plague within a plague; it’s a plague that sustains a plague.

And as I stand here, the only way we’ll rid the world of stigma, and the relentless discrimination that attends to it, is by publicly confronting it at every turn … no quarter given, no apologia, no passivity, no capitulation. There are many obstacles in the path of an AIDS-free generation: stigma is the worst of them. It’s the most venomous, elusive and annihilating.

Over and over in his speech, Robert Carr said, “It’s Got To Stop.”

I must bring these remarks to an end. There remains, for me, but one other issue that brought Robert to near-apoplexy. The panel will doubtless have many more.

It’s the question of money. At the moment when treatment proliferates, when breakthroughs in prevention abound, when the end of AIDS is on everyone’s lips, when an AIDS-free generation has become a Pavlovian chorus, the most important marginalized groups have no money.

UNAIDS says that we’re $7.2 billion short of what we’ll need by 2015. Funds from the international community have flat-lined. The Global Fund is alive but not yet well. Yet we know that trillions of dollars traverse the globe every day, from wars and bank bailouts to stimulus packages and corporate bonuses. The NGO community and a few governments talk of the Robin Hood Tax on international financial transactions, but even if it ever comes into play, it will go more to climate change and paying down budgetary deficits than it will to global public health with HIV at the center. And if it serves, miraculously, to close the funding gap for AIDS, where are the guarantees that marginalized populations will be, in part, the beneficiaries?

As we sit at this session, the Global Fund is going through an internal transformation that seems destined to dismantle the gains made in addressing vulnerable communities.

What right do these governments have to decide, with such arrogant Olympian folly, who lives and who dies? What right does the UK development agency have—holding the chairpersonship of the Fund as it does—to attempt to dictate terms without meaningful participation of the NGO community? I tell you, if it’s alleged that money goes to the heads of some projects in the field, it positively hyper-ventilates the cerebrums of the people back at headquarters.

Somehow, the magnificent activism of civil society that propelled whatever positive response there’s been to the pandemic has to rise and fight again.

Robert would have loved to lead it, but he’s left that job to us. We can’t let him down.

Download a copy of this speech (PDF, 164KB)