So many have forgotten

By Vuyiseka Dubula

I was just months away from knowing my own HIV status when, in the year 2000, the people took over the streets of Durban marking a revolution to come. Although I was not present in Durban for that year’s AIDS conference – I was already connected to the struggle.

This year I will be attending the 2016 AIDS conference. As I reflect on the last decade and a half, I wonder that if Durban was a person, what would I tell her?

I would tell Durban that after we left you we continued on a difficult path, one which many of us never thought would happen post-apartheid. I remember the year 2004, for which I have no reason to remind myself or you, but I will; because so many have forgotten what it used to be like to march next to someone and then in a few months they are bedridden and dying.

Twelve years ago Francoise Louis, an Médecins Sans Frontières (Doctor without Borders) doctor, called me Ntombi yam, not her “patient”, and I called her Magogo, not “doctor”. Then, this family grew as other comrades and brothers such as Gilles Van Cutsem, Eric Goemaere and Shaheed Mathee became my lifetime comrades and doctors. Today, I am seen by my nurses sister Nompumelelo Mantangana and sister Lindiwe Kotelana. We have become family. I didn’t know any of these hard working health activists before April 2001.

I remember Kebareng Moeketsi, Mandisa Magugwana, Zoliswa Magwentshu, Nomfundo Somana, Queen Qhiza, Vuyani Jacobs, Johanna Ncala, Mike Matyeni, Ronald Low, Jason Wassenaar and many of my comrades. I wish they were here to reflect with me.

I remember Edward Mabunda, who danced and sang in our national march called “Save our Lives” in 2003, not knowing he won’t be around like me to write a reflection to you in 2016. After the treatment march, we had to nurse comrade Nkosinathi, our branch organiser. His ill-health made me confront and visualise my own death. The deterioration in his health made me realise that death was no longer a distant matter, but that it was at my doorstep. I felt rage from fear of death and I felt anger at the moral bankruptcy of our government. Nkosinathi always had a smile. If only our leaders were not so busy with ideological debates, comrade Nko would be writing this reflection with me.

The pills I take twice a day are a reminder of how leaders can sell their people out – how they can commit genocide and go unpunished. It is a reminder of how building poor people’s power is the only weapon we have against the abuse of political power. The pills are a beautiful memory as well as a painful one.

One would have thought that we learn from the past not to repeat our mistakes. Yet, much as the lives of people living with HIV were disregarded under Mbeki’s leadership, poor people’s lives are still disregarded. the daily war on women’s bodies is still not being taken seriously by our leaders. The Marikana Massacre is only the tip of an iceberg. Between Durban 2000 and Durban 2016 our politics have become that of control, domination and NGO institutionalisation.

But, even as I reflect about my journey and my current life within the geographical and spatial segregations of Cape Town I take pride in still taking the same pills Francoise gave me on the 14th June 2004 (AZT, 3TC and NVP). These pills were fought for with blood and life. For 12 years my viral load has been undetectable. The progress is undeniable. Even so, I feel dislocated at times. My mental health is not seen by the healthcare system to be as important as my viral load. Too often I see old comrades who have been on treatment for years, relapsing.

As much as my life and the country has changed in the last 16 years, much has remained the same or gotten worse. I am still expected by the health system to fetch my treatment every two to three months – and if you go too late you are classified as a defaulter. I am lucky to have a village of support from Nombasa Krune Dumile, Sis Mpumi, Norute Nobola, Yandisa Dubula, Fanelwa Gwashu, Mandla Majola, and Lindiwe Kotelana – somehow someone is always there to pick up my medication.

Every night my nine-year-old daughter Nina reminds me that “ndikuphathele amanzi mama” (should I bring you water mom or have you taken your pills?). My three-year-old son Azania also feels compelled to help me with swallowing them by asking “mama khandiqhekezele ndiyakucela” (can you please give me a piece)? There are days when I take the six pills without even thinking what they are for – because HIV is not always present in my thoughts.

Twelve years ago I could name many people who lived openly with HIV – not because they wanted attention, but because people like me needed to know we are not alone. Today we hardly know – it’s the same old faces who are now in their late thirties or fourties. We barely talk openly. We are not visible enough to those who just learnt their status.

The world of HIV is moving very fast – we are now talking about controlling the epidemic and ending AIDS by 2030. But I wonder. Our public healthcare system remains the same – it is weak and falling apart. How will we end AIDS? Where is the long promised National Health Insurance? If the space for civil society and funding for civil society is shrinking, who will control AIDS? If NGO’s and social movements are not building from below who will end AIDS? If corruption becomes normalised who will hold those looting from the state accountable?

This is no longer Mbeki’s or apartheid’s fault but the fault of our current government. They too must account for their own misdeeds. Honest introspection, debate and action is urgently needed. I hope this will happen in Durban.

This year, I celebrate 15 years of knowing that the HIV test I took in 2001 was not a crazy idea – thanks to Nomandla Yako’s counselling and treatment literacy education that changed my life when I first walked into Ubuntu clinic. Without that strong initial contact I would have been a lost soul. Finding comfort and power in my comrades, sisters and brothers arms Nomfundo Dubula, Nonkosi Khumalo, Sipho Mthathi, Linda Mafu, Rukia Cornelius, Zackie Achmat, Mark Heywood, Noloyiso Ntamehlo and many more. Finding and joining the Treatment Action Campaign was the best thing I have ever done. The people I have walked this journey with will always hold the highest place in the revolution house. They know who they are. I thank you all.   

 

Vuyiseka Dubula is the former General Secretary of the Treatment Action Campaign and a member of the Board.

 

4 Replies to “So many have forgotten”

  1. you make me strong im a defaulter but now im ready and love my self more thanks dear i wish i can see you life

  2. This is amazing Vuyiseka we have come a long way . i can now sing Uzungakhali PWA with less emotion . when i was in the eastern Cape i could not finish that song without crying we have come a long way . Without the family networks and social movement we would not be where we are.

  3. Owu ngezontsuku when we used to prepare the comrades to start Arvz , others were saying “Sloyie uthi zofika ndisaphila ” zihle inyembezi kum ndizibe ecaleni but thanx God they are alive …whilst we were waiting for DOH Bisho to approve the facility based on the criteria ……sisuka kude Mavu!!!

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