A broken unity

A series of articles by guest writers for World AIDS Day Part of AVERT's World AIDS Day 2012 campaign, ‘Reflections on the Epidemic’ are a series of articles by guest writers. Our guest writers range from global leaders, writers, experts, activists, physicians and people personally affected by HIV and AIDS; and they represent various countries, experiences and backgrounds from all over the world. We are grateful to all our guest writers for their effort and the diverse and insightful viewpoints that they contributed to the world’s response to HIV and AIDS. We will be re-featuring these articles over the next few weeks on a weekly basis. Browse through this week’s featured articles, and see the full list below.

On this World AIDS Day, it will have been twenty years since I was diagnosed HIV-positive and less than twelve months since learning I had breast cancer.  I was preparing a memoir for publication when the cancer was spotted, enabling me to compare the two experiences:

“Among the smorgasbord of feelings that rolled in with the cancer, there was not a shred of shame.  Friends, family, loved ones, neighbours – people came rushing in to comfort and encourage me, and I let them.  They rallied to my support, rooted for my surgeons, prayed for my healing.  Never once did I experience the terror of being excluded, the shame of being judged, as I did after my diagnosis with HIV. 

…We’ve infused American AIDS with so much shame that women and men at risk are too afraid to be tested; they’d rather die than know.  And once you are diagnosed positive, you head for silence, not support. 

If you have cancer in America, you look for a great doctor.  If you have AIDS, you look for a place to hide.”

No matter where I meet or work with HIV-positive women – in the USA, in Zambia or elsewhere – the one constant is stigma.  Our fear of being discovered is rooted in the terror of being judged, hated, and excluded.  Judgmentalism and discrimination have met this plague at every turn and in every community.

We are now into the fourth decade with AIDS, the fourth decade in which people infected with a virus are treated as moral deviants.  We are told we are dirty; we are unappealing and unworthy.  As a result, although we have all the medical knowledge needed to keep people alive, tens of millions are dying, leaving something like 15 million orphans in our wake.  How is this possible?

It’s possible because we have no single global organisation that represents people with AIDS and speaks to the communities in which we live.  We may speak of a global “AIDS Movement” but it’s a myth, or an exaggeration.  We have agencies here and institutions there, hundreds of initiatives and thousands of groups.  We are a fractured people, unable to communicate effectively to one another or to the nations that contain us.  We are sadly ineffective at mounting real efforts at education, prevention and treatment.

What’s desperately needed is a single body that speaks for those with HIV/AIDS and has as its goal not only the end of stigma but the end of the epidemic: eradication of the virus.  We must address both issues simultaneously, or we will fail at both.

Around the globe, millions of wonderful, self-sacrificing people are hard at work in thousands of marvellous AIDS organisations ranging from tiny clinics to vast bureaucracies.  I’m grateful for all and critical of none.  What we lack is not more agencies or more groups.  We need but a single, coordinated body capable of speaking with a clear, convincing voice.

Is it possible? I believe it is because I see other causes with missions that have assembled global organisations.  Corporations do it.  Religions do it.  The Olympics provide a global organisation for sports and technology provides a global platform for communication.  What it will take, it seems to me, is the will to make it happen.

Individuals committed to change in the AIDS epidemic will need to be willing to throw their support to others, putting themselves in service to a broader cause.  Organisations now engaged within the epidemic may need to contribute their structure, their funds and their leadership to a broader group.  It will require personal and institutional humility infused with a spirit of self-sacrifice.

I don’t know which comes first, the organisation or the leader.  Perhaps we need a Martin Luther King for AIDS, a Desmond Tutu ready to lead the global cause.  Or perhaps if we build the organisation, the leadership will come.  I truly do not know.

But this I do know: So long as AIDS is a fatal disease for which shame is a dominant symptom, we cannot win the battle.  And so long as we are a chorus of small voices crying in the noisy global wilderness, the systems of power will not listen. 

On December 1st, I’m going to work for unity.  I’ll pray for leadership.  When we have both, only then will those newly diagnosed with AIDS look for a place to be healed rather than a place to be hidden.

Mary Fisher is an artist, author and activist living in the USA. 

One of Mary's speeches on HIV has been considered one of the most significant American speeches of the twentieth century. For more information see AVERT's history page.

Image copyright: 'Mary Fisher's 1992 Speech' and 'Mary Fisher' courtesy of Mary Fisher.