OPINION: Fear, guilt and shame play havoc with the choices we make. Fear is the reason a man who feels unwell opts not to visit a clinic despite displaying symptoms while continuing to reject condom use.
by Judi Nwokedi
Despite South Africa having the world’s largest anti-retroviral therapy (ART) programme, despite the scientific developments and research, despite the bold commitments and good intentions, one fact is brutally clear. The virus is winning.
We have made a mistake in treating HIV as yet another chronic condition, like diabetes, high blood pressure or heart conditions; all major killers in South Africa. The difference is this: HIV travels with a whole lot of excess baggage – guilt and shame in the infected; coupled with judgement and ridicule from the community.
No other disease carries this level of burden. No other disease challenges the infected with both external and internal stigma. We have the testing kits. We have the drugs. Stigma is the lingering threat to eradicating HIV infections. The best scientific interventions are doomed to fail for as long as stigma prevails amongst us.
Only HIV carries the heavy price of ridicule and rejection when the infected dare to disclose their status.
Stigma is the reason HIV is still being associated with promiscuity, immorality and bewitchment. We may hide behind these stereotypes but not for much longer.
HIV does not ask if we are male, female, transgender, young, old, black, white, gay, straight, good or evil? HIV does not ask if we deserve to receive this virus? HIV only requires us to be human. No one is spared. If you think you are safe from HIV, then you are most definitely in danger.
In the battle to contain HIV infections we cannot embrace the medicines while ignoring prejudice.
We cannot continue to bury our loved ones when we cannot speak the word AIDS. We can no longer allow those infected to marinate in shame while we give others permission to judge, belittle and wound. We can no longer weep silently and grieve alone.
Fear, guilt and shame play havoc with the choices we make. Fear is the reason a man who feels unwell opts not to visit a clinic despite displaying symptoms while continuing to reject condom use.
Dis-empowerment is the reason a woman will not insist on condom use out of fear of being labelled “loose”. Shame is what prevents us from not realising that those who reject us because of our infection are not worthy of our love or our time. Guilt is what eats us inside and leads us to self-harm when we think contracting HIV is our fault and punishment.
To the Clinic and the Church, I say this. There are some healthcare and spiritual providers that are brilliant and empathetic, but it is regrettable that these pillars of our communities tasked with the care of the body and care of the soul are still too often the sites of severe discrimination and stigma.
The 11 principles of the Batho Pele ("People First“) concept, introduced by the Mandela administration in 1997, are only visible on yellowed posters in waiting rooms, and often not put into practice. This is the major reason why marginalised population groups avoid seeking medical help.
To our national leaders, my message is this. History and hindsight are our teachers. it is time to act as swiftly as we speak and for you to stand with us, and not in front of us.
Political denialism
Ignorance and poor service delivery have killed us in the millions. Over the last decade we have focused more on clinical treatment, and placed prevention and education on the backburner.
Perhaps, most important of all, is the call to action to ourselves, the people. Nothing accelerates HIV faster than hateful words, spiteful actions and ignorant thought. The myths and the madness have got to stop. Ignorance gives power to suffering and injustice.
Our words have power. There was a time when the term “gay” was used as an acronym for “Got AIDS Yet?”.
When we stop referring to those suspected to be living with HIV as Z3’s or Trackers, stigma loses its spread. When we use the phrase “HIV-infected woman/man” we strip the person of their humanity.
When we stop referring to “AIDS orphans”, we will enable our children to grow and develop less burdened by the trauma of their birth circumstances. When we receive condolences following a cancer bereavement, yet deny the AIDS-related death of a loved one, we block the freedom of disclosure for those living with HIV.
Without language, stigma is stopped completely in its tracks.
But as the saying goes, “Talk is cheap”. In the response to HIV stigma and discrimination, this sentiment has never been truer. The latest figures from Statistics SA estimate that 7.8 million people are living with HIV in South Africa (June 2020), and HIV prevalence among adults aged 15 – 49 years stands at 18.7% of the total population. With the decline in testing levels since the onset of COVID-19, these figures significantly under-represent the reality on the ground.
These figures attest to what we already know. There is no community, no household, no organisation in South Africa unaffected by HIV. Everyone has a story, and every story has value.
Someone just has to hear it. The next time we look for a face to represent the face of HIV, we need not seek out a neighbour, a colleague, a fellow churchgoer or even a stranger. We need only to look in the mirror.
* Nwokedi is the chairperson of the AIDS Consortium in South Africa
** The views expressed here may not necessarily be that of IOL.