A NATIONAL HERO WHO SAVED A GENERATION!
The fight against HIV and AIDS in Swaziland has been going on for some time now, as has been the case in most parts of the world, particularly in Sub-Saharan Africa where the situation has been comparatively rife. What is encouraging has been the success in the battle.
Among other programmes, the Prevention of Mother-to-Child Transmission (PMTCT) has saved numerous lives and all thanks to the government, NGOs, and other development partners that have worked diligently over the years to invest in this program, alongside others. Today, it is almost certain that a child will be born HIV-free, even when his/her parents have the virus. By the year 2020, the rate of mother-to-child HIV transmission had been reduced to 1.4%, down from 34% in 2004!
Another success story in the fight against HIV has been the significant reduction of stigma, in comparison to the time when we lost hundreds of people partly due to stigma and discrimination which restricted people from coming out in the open to get help and to help others. Now we know that HIV does not mean death; we are aware, we live, socialize, and do business with families and friends who have the virus without the limitations of myths and misconceptions, and we know how to help them when they need us. It took giant men and women to publicly declare their status and face the battle against AIDS head-on. These men and women stood up at a time when it seemed scary to declare your status; they came to our communities to give us knowledge that helped us rebut fear during a period when we were losing our loved ones due to AIDS conditions.
Among these national heroes and heroines is HIV activist Vusie Matsebula, who was the second person in Swaziland to publicly declare his HIV status in September 1996. Little is told about these patriots who risked everything to save a nation that was on the brink of collapse.
In commemoration of World AIDS Day (01 December) and the month of December, a period in which people around the world unite to show support for people living with HIV, and to remember those who have died from AIDS-related illnesses, The Bridge spoke to Vusie Matsebula about his life, the fight against HIV and his thoughts on the health sector, governance, and human rights. Throughout the interview, one could see the passion for life and the commitment to the battle against HIV through the eyes of Matsebula, who keeps saying, “Information is key.” We hope that our readers will find this interview to be as informative and helpful as it was to us.
The Bridge (TB): Vusie, it’s a beautiful day in Mbabane – welcome, and thank you for allowing us to have this interview on your special day (birthday). Happy birthday, national hero! Do you mind telling us your age?
Vusie Matsebula(VM): It is a pleasure to speak to The Bridge, a publication that I read every Sunday; thank you for your insightful Journalism. Well, today (Friday 09 December) I turn 52. God has been amazing; I am so grateful.
TB: Once again, happy birthday; we appreciate you. Do you mind taking us through your life journey: early childhood and education?
VM: I was born in Mbabane, at the government hospital, and raised in Bulembu where I stayed for the better part of my childhood and did my primary school. I then moved to Mzimnene near Ndzingeni, in the northern Hhohho region, towards the latter part of my primary school education, after which I went to Manzini for high school. HIV hindered me from getting access to tertiary education, but the virus afforded me another opportunity that has shaped my career as a community worker and social justice advocate. I have travelled across the length and breadth of Swaziland and other countries of the world, where I received short-term training in various fields, including Management and Administration, Advocacy, and Counselling. I have gained lots of experience in the health sector, working with the government, NGOs, and development partners over the years. It has been fulfilling to work in this area and to help other people.
TB: When and how did you discover your HIV status, and can you please tell us how you reacted to this?
VM: In July 1992 a woman deliberately infected me with the virus, after which she called to tell me about it. I survived a suicide attempt in 1992 after learning that I am HIV positive (during those days it was known as just AIDS). In the early 90s, testing HIV positive was like a death sentence, especially because medically there was no solution at hand, once it’s declared that you had it, man, you were on your own!
Looking back 30 years later, I owe the woman who deliberately infected me a long hug because she actually saved my life that Friday she decided to inform me that I had the virus. And I believe that it was God’s wisdom that I was able to accept her story even though I had not confirmed it through a blood test. I know of thousands of people in the country who succumbed to death largely because of denial. In the long run, I believe my acceptance of what she told me saved many people whom I could have infected without knowing. And that’s how HIV spread like wildfire in the 90s when casual sex was like fashion. Many people were terrified as soon as they learned of an old girlfriend or boyfriend who was sick and the signs and symptoms associated with HIV. I know many people who died painful, humiliating, and lonely deaths as a result of this silent killer as it was known back then.
I say painful death because they died first in their minds when they concluded that their former lover had been either visibly sick or had succumbed to death as a result of AIDS. And humiliating because they would actually visualize their own death before it actually came and they would give up on fighting for life and surrendering unto death even when they were physically healthy. And I say lonely death because of the stigma of HIV that came along with it. I know a few people in Mbabane who, when they suspected and concluded themselves to be infected with HIV, would start punishing themselves with self-stigma and push themselves away from their close friends and families, until they finally succumbed to death.
From the day that woman gave me the information that I had ‘AIDS’, I was paralyzed with the fear of death too as I was not aware when my immune system would start failing me. The very thought of living every day knowing that you are carrying a ‘monster’ that is eating you up a bit by bit was traumatizing enough. I was taking nothing that would delay the progression and multiplication of the virus within my body. I knew that each day was bringing me closer to death. There were days when I felt like just giving up and some days would feel brighter and I felt a sense of gratefulness that am still alive, at least for a moment. This went on until I traveled to my first international conference for people living with HIV which was in Cape Town in 1995.
TB: Talking about the international conference in Cape Town, we want to know when did you finally do your blood test and how you got involved in the fight against the virus at the national and global levels?
VM: I did my first HIV test in March 1993 and this led to the first counseling session since my infection in the previous year, 1992. Soon after, I co-established the first support group in 1993 which was subsequently registered as an NGO. In 2004 it was a fully functional community service provider, specifically for people living with HIV. From 1994 to date, I have been a community activist, working with ordinary people on HIV-related matters.
The year 1995 was a turn-around point because I attended the international conference for people living with HIV, where I met people living with HIV who inspired me to look beyond the infection and to begin using my condition to reach out to communities and advocate for a stigma-free society. I came back home ignited with so much energy which led to my disclosure in September 1996 and became the second Liswati to speak openly about my HIV status.
In 1997, I represented young people living with HIV as a ‘Young Positive Ambassador’ and was elected Secretary General. In 2000, we mobilized the entire nation to the first World AIDS Day campaign; this campaign led to the two major cities, Manzini and Mbabane, coming to a standstill as masses flooded the two roads leading from the cities to Somhlolo National Stadium in Lobamba. This was probably the greatest achievement ever, as it awoke the government to the reality that HIV was causing to the nation. We joined other people living with HIV worldwide in advocating and forcing world leaders and their governments to commit financial resources to the HIV and AIDS response, especially treatment. The United Nations General Assembly Special Session on HIV/AIDS was held on 25-27 June 2001, in New York. In 2002 we initiated a pilot project on HIV Treatment enrolment was initiated as a Swaziland AIDS Support Organization (SASO), National Emergency Response Council on HIV and AIDS (NERCHA), and Mbabane Clinic collaboration. I then became a freelance columnist with the Swaziland Observer under the title ‘It’s now or never’ which was followed by many people. I also co-established the first network of people living with HIV and served as a NERCHA Board member for three consecutive terms.
TB: Tell us more about your disclosure, the reaction from the public, and the work you did around this.
VM: (Sighs) Well, stigma was rife at the time, but I will come back to this later. So, after the 1995 conference, I decided that, as part of my advocacy work, I would come back and start a disclosure campaign, together with other activists. The vision was aligned with the government's cause of getting as many people tested for HIV as possible. My personal disclosure campaign was therefore crafted in three objectives: a) to focus on raising awareness to those who had not been infected yet were in denial of the realities of AIDS. b) to focus on those who were already infected but struggling to come to terms with their own condition and c) to focus on those who thought were untouchable and these were the most difficult ones as they felt that people infected with HIV deserved to be isolated from the rest of society.
Through the Swaziland AIDS Support Organization (SASO) which we established in 1993, we traveled across the country in partnership with the government through the Swaziland National AIDS Program (SNAP) during the “know your HIV campaign”. I would say that during the period between 1993 and 2000 we were in the mode of managing a crisis as HIV was rapidly spreading and there was a lot of vigorous work focusing on HIV prevention through raising awareness and getting people tested for HIV.
I must say our collective efforts with other stakeholders in the NGO sector did pay off eventually. However, before we could see the results of our efforts, people had to die in numbers to the extent that we had to do burials even during the week. It was during early 2000 when AIDS became lethal as many people started presenting all signs and symptoms. It was attitudinal behaviors that led to a large number of professionals being exposed to HIV infection such as the police, soldiers, teachers, journalists, nurses and doctors, and managers from the corporate place. The reason behind this was the general belief that HIV was a disease of the poor. And quite frankly, it was a fact, however, it was also the poor who were mingling with the have-it-all and this is where HIV penetrated every sector of society. While the poor were able to adhere to the safety precautions laid out, the professionals were left exposed by untouchable attitudes.
I believe that we are not here to bring light into the world, but we are here to be the light as the bible scriptures say “let us make man in our own image” and if God is light we ought to resemble him and be the light. My message to young people is that they should not get weary of doing well for humanity without expectations. That if you light a lamp for someone else it brightens even your own path. Youth must go out there a shine their light in this dark world and be counted amongst the stars who make a difference.
TB: Who was supportive during the early days of discovery? How was the level of stigma and how did people react to the news of the newfound virus?
VM: Stigma was rife in the country simply because there was very little information about the disease, and people reacted negatively to those living with HIV, which caused the problem to escalate because people would rather hide. This fueled it more and it became well known as a ‘silent disease’. My family, my mother and my sister Nobuhle in particular were very supportive. They stood with me throughout my journey with HIV. Nobuhle helped me to break the news to my mother, something that was very difficult to do. In 1995, after realizing the frustration of keeping it a secret from our mother, she helped to break the news on my behalf, and wow it was like a bird has been set free from its cage! This disclosure was very important to me because it opened the way for my public disclosure in September 1996.
When HIV was a social priority and not just a business venture as it is today, there are individuals that excelled beyond their profession and brought their humanity within themselves. These are the people who broke all protocols and procedures, just to reach out and address a problem at hand. They showed us that it is possible, in fact, they are the reason we stood firm believing in the vitality of hope and a possibility of a better future. Some of these people are:
- The SNAP department headed by Rudolph Maziya, Rejoice Nkambule, and Sibongile Mndzebele
- UNDP and CANGO-Alfred Mndzebele
- Hannie Dlamini- I think this tops them all if you know what I mean
- Federation of Swaziland Employers-Musa Hlophe, as director, provided leadership within the capitalist world of making money
- Journalists who respected their work and offered their service beyond their careers such as the late Sabelo Masuku, Martin Dlamini, Nomahlubi Matiwane, Veli Simelane, Sifiso Dlamini now with ESC, Lindelwa Mafa, just to mention a few
- Thembi Nkambule-former Swaziland National Network of People living with HIV (SWANNEPHA) Director provided a true feminist advocacy leadership and empowered so many women living with HIV.
- NERCHA- Derek von Wissell - always had an open door policy, not a fake one as some do today - in fact, this guy would override some procedures just to ensure that communities receive all the support.
- Dumsani Kunene-NERCHA Finance Director-trained us on project management, especially grant management
Beatrice Dlamini-former Swaziland National AIDS Program (SNAP) Director
- Dr. Mills - offered People Living with HIV (PLHIV) his time for free technical support, dispelling the myths that came with HIV treatment; he is still offering free consultation services even to this day if he is not already retired.
- Alfred Mndzebele, both at UNDP and with the Coordinating Assembly of Non-Governmental Organizations (CANGO)
- Gcinile Buthelezi donated for my first treatment for 12 months in her medical aid system
- Bonsile Mamba, Bhekie Ngobese
- Dr. Futhi-provide free services for PLHIV in their private clinic
- Dr. Magagula-provide free services for PLHIV in their private clinic
- Thandi Nhlentfwa- The AIDS Support Centre (TASC) Director
- Dr. Jonothan Dlamini
- Sibusiso Dlamini-Now Director of Light Home Care services-while with NERCHA, trained, nurtured, and mentored us on proposal development and reporting
TB: Which were the first NGOs that got involved in the fight against HIV and AIDS at that time?
VM: A few of the NGOs that held the bull by its horns then:
• The Family Life Association of Swaziland (FLAS)
• Swaziland Action Group Against Abuse (SWAGAA)
• Schools Health Population Education (SHAPE)
• Salvation Army
• The AIDS Support Centre (TASC)
• Swaziland AIDS Support Organization (SASO)
• Alliance of mayors initiative to Combat AIDS at Local Level (AMICAALL)
• Women Together
TB: Would you please take us through your personal life and what made you live longer?
VM: Basically, it’s positive living – always focusing your energy on the positive side of things, despite obvious challenges one may be facing at a given point in time. The state of one’s mind determines the quality of life one will have. And being positive is not pretending that everything is good, but is about seeing the good in everything. That attitude helps a lot, trust me. Many people in the current generation are grossly affected by fading material things and easy fame. You need to learn and master the ability to survive with yourself under the grace of God, the omnipresent. Seek respect, not attention, because respect lasts longer than being noticed.
The knowledge of herbs as food has immensely contributed to living longer as they say we are what we eat. I was introduced by HIV to the knowledge and benefits of natural herbs, and this was the time when there were no antiretrovirals (ARVS); the only thing that kept us hopeful was the importance of food in enhancing a strong immune system. The idea was to ‘let thy medicine be thy food’.
TB: Do you think the government has been supportive and responsive to the fight against HIV and AIDS?
VM: My memory is not so very good when it comes to the government’s responsive attitude towards the HIV response. It has always been reactive instead of responsive, unfortunately even today. The famous 90/90/90 targets are actually the fruits of the hard labour and selflessness of rare visionary leadership in the likes of the Rudolph-led SNAP team, Derek von Wissell-led NERCHA, Dr. Mark Mills, and Musa Hlophe for the private sector, and many others I have mentioned above. Oftentimes, they had to risk their careers just to save the nation. I also think we owe so much to our international friends who have always shown much-needed leadership and monetary commitment toward addressing the devastating impact of HIV in communities. It is unbearable to deal with stubborn leadership but even worse with corrupt leadership for that matter.
There are areas where the government has been supportive and responsive, such as in the prevention, especially mother-to-child transmission care, care support, and treatment. I applaud the recently launched parliament HIV and AIDS wellness strategic plan, never mind that it has taken more than three decades since the first case of HIV was reported in the country, but at least it’s here now.
I don’t think the government has been very supportive at all, instead, there are individuals within the government who strived and stretched themselves to the limits in order for the government machinery to work in favor of the people. The life-saving treatment was almost delayed to be enrolled simply because a minister of health had feared that people will not afford watches to monitor the time to take treatment was a serious joke in early 2000 when people were actually dying like flies. It took a strong civil society-led advocacy to force the government to enroll in this life-saving treatment.
We have not done well on human rights, we have heard in government at times even in Parliament leaders of high esteem declaring that PLHIV should be branded and excluded from the rest of society. The deliberate closure of SWANNEPHA is the most recent of human rights abuses I can remember, the voice of PLHIV was overrun and decisions about people living with HIV were taken without their involvement. The National HIV Policy launched around 2008 tells a lot about a government that is never in a hurry. This policy was intended to protect against the unfair abuse of PLHIV through stigmatization which was most prevalent within the private sector where a lot were forced to lose jobs due to an unbearable negative environment. It took a strong advocacy campaign by civil society and PLHIV to force the government to launch this important piece of guideline.
In the late 90s and early 2000, this country experienced a gruesome reality where there were mass burials. Dr. Derek von Wissell had earlier warned the cabinet that if proper strategy is not devised sooner, the country will plunge into devastation and be overwhelmed by HIV and AIDS. His warning came through years later and he had to be recalled from retirement to transform the then Crises Management Committee.
It took 14 years for the government to be forced to wake up from the slumber and denial to declare HIV a national disaster in the year 2000 and by then many people were already dying in numbers. The world opened its hands and reached out to assist the thousands of orphaned children through noble initiatives such as the King’s Trust music festival that saw the likes of international brands coming through. The government and individuals from the minority elite messed everything up through corruption. The international community saw this and turned its back on the poor Swazis.
TB: What’s your take on the system of government in Swaziland, do you think we can do better in the health sector and other sectors with a new system?
VM: While it is true that there is no perfect system in the world, however with the lack of clear leadership direction in our country at the entire government machinery, one has not many options but to look forward to the new Swaziland that will value human life and put people first before infrastructure.
TB: What are your current projects? And your family as well as social life in general?
VM: Inspired and motivated by Bob Marley’s song ‘pass it on’, my social life is in community service. I always receive a lasting inner reward for helping others. I was surprised recently to see myself featured in this publication and heard what people were saying in recognition of the contributions one has done to this nation. It was truly humbling to read what people were suggesting, however, given the opportunity to share what I’d prefer as recognition of my contribution to social work, I would say that I want to see justice done for the victims and survivors of the June/July 2021 political unrest in eSwatini. That to me would be the best and most satisfying honor.
Systemically, I would say our voices as advocates of Human rights and defenders of poor communities, have been suffocated by individuals leading institutions meant to assist people living with HIV, simply because of egoism. And it is very sad that this is happening at a time when resources are more available than they were in the early 90s. However, I believe that having worked without resources during our initial community engagement has prepared us for such times. We have always emerged stronger and more determined to make a difference even when resources were deliberately withheld, simply because our cause is not of man but of God. I mean the light is not us but the light is in us, you can take us into the deepest jungle, and the light will continue to shine.
Personally, I have a wonderful woman in my life, a pillar of strength, my very best friend who despite the stigma she had to endure for loving me (from her friends and some family members) chose to stand by me. Together we have a 9-year-old HIV-free beautiful daughter, thanks to the PMTCT government-launched program.
I am a vegetable, herbs, and corn farmer, helped establish a community vegetable association at Ekupheleni where I serve as a secretary and currently running with technical support from FINCLUDE.
Furthermore, I am part of a project named Bangani Forum, established in 2016, of which the current Minister for Sports and Culture is a member. This project was initiated as a response to poverty; it was meant to organize friends who would rise up and support one another despite the harsh challenges of lack of resources.
I went on to establish Turn it Around (TIA) which has a focus on addressing HIV issues but from the angle of addressing poverty amongst young people and the elderly living with HIV. The success story here was a self-funded initiative that successfully mobilized the Ekupheleni community to commemorate the first World AIDS (TIA) Day at Ekupheleni that was officiated by Chief Ndlovula who encouraged young people to start livelihood projects instead of migrating to the cities in search of work, which is scarce to come by.
In 2021, TIA, in partnership with the Foundation for Socio-Economic Justice (FSEJ), established the Swaziland Massacre Victims and Survivors (SWAVISA), a humanitarian, non-partisan, and non-profit and non-governmental organization whose mandate is to ensure accountability for all the victims, survivors and families of those injured and killed during the June/July 2021 political unrest in Swaziland.
TB: Vusie, thank you so much for your time; we appreciate you.
VM: It has been a pleasure.