Reviews Profiles
(c) The Economist Newspaper Ltd, London, 2005
AIDS in South Africa
Taking a lead
Jul 21st 2005 | JOHANNESBURG
From The Economist print edition
AFRICANS have many names for AIDS. “Slim” and “the thinning disease” are blunt and descriptive. Some Batswana dub it the “radio disease” after years of public-health broadcasts there. Others who use life-prolonging anti-retroviral drugs (ARVs) talk of them as “airtime”, as if buying credit for a mobile phone. Some say “Henry the Fourth” or “Hello, I'm Victor” for HIV. Official discussion is rarely so forthright.
An estimated 6m South Africans are now infected, including many politicians. A few leaders, notably Nelson Mandela, have disclosed that a close relative died of AIDS. But who dares admit having the disease? Some two decades since the epidemic erupted, only one holder of a public office in South Africa has done so: a white, gay judge in the country's Supreme Court of Appeal.
Edwin Cameron went public in 1999 for many reasons. It lent him authority when speaking of ARVs, the drugs that keep him alive and healthy. In “Witness to AIDS” he describes how, as the virus first took a grip, he was a living corpse on which white fungal spores grew. With careful treatment he felt glorious: “Life forces were coursing through my body.” Thanks to the pills, seven weeks after being too weak to climb a flight of stairs he strolled up Table Mountain.
Open about having AIDS, he lent support to an activist campaign for international drug firms to scrap patent protection and cut their prices in Africa. And he challenged South Africa's government over its feeble response. President Thabo Mbeki disbelieves the orthodox science of AIDS and leads official scepticism about ARVs. But Mr Cameron's account shows how well the science actually works. By being honest he also hopes to persuade South Africans that AIDS is a normal disease.
Despite the jocular names, many people still consider AIDS to be shameful. In 1998 Mr Cameron heard of a young woman who was stoned and stabbed to death shortly after saying, on the radio, she had HIV. Horrified, he resolved that the powerful and relatively rich, like himself, should speak out. Mr Cameron expected others to follow his example. “AIDS is above all a remediable adversity,” he concludes; it can be beaten and many saved if enough join a fight against it. Sadly, six years on, few elected officials will even be seen taking an HIV test, let alone going public with the result. More should dare. Mr Cameron found nothing but encouragement after announcing he had AIDS and Mr Mandela's revelation that his son had succumbed to the disease was met only with compassion.
Alina Oswald - Arts Understanding - December 2005
Alina Oswald, a freelance writer and author of Poetry of the Soul, interviewed Edwin Cameron during his United States book tour in October 2005 for the December 2005 issue of AU (Arts Understanding). We publish Alina’s profile below with the author’s kind permission. Contact her by e-mail at This email address is being protected from spambots. You need JavaScript enabled to view it. , www.mediabistro.com/alinaoswald. For Alina’s article on the AU website, follow http://www.aumag.org/features/CameronDec05.html
Bearing Witness
During his U.S. book tour for Witness to AIDS, Justice Edwin Cameron talks with Alina Oswald about coming out as positive, fighting AIDS denialism in South Africa, and countering the stigma of HIV with hope AIDS is a disease. It is an infection, a syndrome, an illness, a disorder, a condition threatening to human life. It is an epidemic-a social crisis, an economic catastrophe, a political challenge, a human disaster," Justice Edwin Cameron states, reading from his new book, Witness to AIDS, at the Lesbian, Gay, Bisexual Transgender Community Center in New York City this past October. Called "a beacon of inspiration" and "a fighter" by some members of the audience, Edwin Cameron is an internationally recognized human-rights and AIDS activist, and a Judge of Appeal on the Supreme Court of Appeal in South Africa. After living with HIV for several years, he was diagnosed with full-blown AIDS in 1997. Two years later, Justice Cameron became the first public official to reveal his HIV-positive status in South Africa. Born in 1953, in Pretoria, South Africa, Edwin Cameron studied at Stellenbosch University, Oxford, and the University of South Africa, winning top academic awards at all three universities. In 1983, he joined the Johannesburg Bar; in 1986, he started practicing as a human-rights lawyer at the Centre for Applied Legal Studies (CALS) at the University of Witwatersrand. While at CALS, he codrafted the Charter of Rights on AIDS and HIV, cofounded the AIDS Consortium, and founded the AIDS Law Project, also serving as its first director (www.alp.org.za). A gay man, he also worked successfully to include sexual orientation protections in the South African Constitution. He became a High Court judge in 1995. Though he had become an AIDS expert over the years, Cameron did not disclose that he was positive until 1999; he believes he contracted HIV sometime in 1986. "Witness to AIDS is a story of hope," Cameron tells me when we get to talk, "because it recedes the stigma and the fear of this disease, because it shows people that AIDS is medically manageable. I'm living proof of it." Witness to AIDS stands as proof that miracles do happen-in this case, with a little help from HIV treatment and medication. It tells of the author's own "Lazarus" story of miraculous recovery and documents his journey from the brink of death to the normality that living with HIV/AIDS allows. The read is bold, offering a lesson in life for those brave enough to confront their struggles. Above all, Witness to AIDS documents accurate facts about AIDS in Africa and what Cameron calls "the most tragic part of how South Africa deals with AIDS"-the South African politics of AIDS and President Mbeki giving credence to South African dissident views regarding the origin of HIV. Cameron finds this beyond imagination. In essence, "[dissidents] compare themselves to Galileo," he explains. "But the truth is that Galileo did apply scientific methods [and] it was because of the application of scientific methods that Galileo proved himself right." In Africa, AIDS is sometimes thought to be part of a white-borne racist agenda, propagated by stigmatizing conceptions of African sexuality and Africa as the "origin" of AIDS. Talking about AIDS is yet another way to insult Africa. "Now, why would it be insulting to say that a virus originated anywhere?" Justice Cameron concludes his brief explanation. Viruses originated in China, or in Spain, or in South America, but none of them are linked to shame, stigma, or gender injustices. These factors still influence the pandemic's evolution in Africa where AIDS is not only a medical disease, but also a gender and social disease. Cameron believes that fighting poverty is central to the fight against AIDS. As he explains in Witness to AIDS, medical researcher and human-rights activist Jonathan Mann showed that poverty and subordination in society go together with the risk of AIDS. Mann believed that by remedying injustice and gender subordination, we remedy the struggle against AIDS. (Cameron gave the Jonathan Mann Memorial Lecture at 200o's XIIIth International AIDS Conference in Durban.) "Living with AIDS is almost like a second career," Cameron says, explaining his own struggle with the virus. Coming out as positive has helped him refocus his energy on living. He calls it "an investment in the rest of [his] life." But his action has not encouraged other prominent public figures to follow in his steps. The reason in part lies with the persisting stigma associated with an AIDS diagnosis. Justice Cameron is the first to acknowledge that silence about the disease is the biggest problem in Africa. Denial also fuels stigma. How can we fight stigma? Cameron points out that the real question is: How much of humanity has to perish for us to respond to AIDS? He emphasizes the importance of AIDS education: The more informed we are, the better we can defend ourselves. "We need to have acceptance of the facts," he says, because AIDS reveals a lot about the structures of the world-North and South, rich and poor, placing developed and developing worlds in close proximity, perhaps too close for comfort. "AIDS beckons us to the fullness and power of our own humanity," Justice Cameron writes at the end of Witness to AIDS. "It is not an invitation that we should avoid or refuse."
Angela Muvumba - University of Cape Town’s Centre for Conflict Resolution (Seminar on Witness to AIDS) - 7 February 2006
The University of Cape Town’s Centre for Conflict Resolution held a seminar on Witness to AIDS on Tuesday 7 February 2006. The author spoke about the book, and the discussant was the Centre’s Angela Muvumba. Here are her remarks:
I came upon Edwin Cameron’s remarkable book, Witness to AIDS just as our project on HIV/AIDS and security was beginning. Witness offers a coherent and enlightened view of the many debates about HIV and AIDS, but it also reminded me of something Toni Morrison, 1993 Nobel Literature Prize laureate, said in her Nobel lecture in 1993:
The vitality of language lies in its ability to limn the actual, imagined and possible lives of its speakers, readers, writers… Be it grand or slender, burrowing, blasting, or refusing to sanctify; whether it laughs out loud or is a cry without an alphabet, the choice word, the chosen silence, unmolested language surges toward knowledge…
Witness to AIDS, which is part memoir and partly an instruction in the recent history of HIV/AIDS in South Africa , indeed, surges toward knowledge. The book illuminates the many contradictions, tragedies and life-affirming experiences of living with and being affected by HIV/AIDS. Witness also raises troubling yet necessary questions about two interior cores of our fragile human consciousness: sex and death. Because it’s a disease, which is contracted through sexual intercourse, it is still a great and unfortunate source of shame. Our fears about sex, and our as yet underdeveloped capacity to live without shame influence the way we respond to HIV/AIDS. The desperate need to apportion blame is the very backbone of stigma.
I want to focus my comments on four issues presented in the book as critical for living with, and responding to HIV/AIDS. As Edwin Cameron put it in his public disclosure: the choice to speak out indeed the ‘freedom’ to live openly as an HIV positive person with its attendant liberation from secrecy was available to him for very particular reasons: 1) because he had a secure job; 2) support from loved ones, friends and colleagues; and 3) access to medical care and treatment.
Let me begin with the ‘supportive family and community’. In a ‘jovial, nearly festive atmosphere’, Edwin Cameron took his first ARV pills sitting with a group of close friends on a warm summer evening. This image is astonishing. It conjures up home, stability, certainty and companionship. It reminded me of Walt Whitman’s lines:
There is something in staying close to men and women and
Looking on them, and in the contact and odor of them, that
pleases the soul well,
All things please the soul, but these please the soul well.
However, for many people, taking ARVs remains enshrouded in secrecy and shame. How many people today are quietly taking their medicines in hiding from their husbands, wives, mothers, children, pastors, friends, co-workers, lest the knowledge of their HIV status leads to divorce, dismissal from work, moral condemnation, and a bleak exile from the circle of people that are home.
And yet, I don’t know of a single person on ARVs who has done it without the safety net provided by people who love them. How could they? Indeed, family and support is so important to survival that the vast majority of treatment programmes insist that patients have a ‘treatment’ buddy to walk the path with you.
And what of ‘work and income’? The author, like so many people, has had to worry about the cost of the drugs that will sustain him. Concerned about the exorbitant cost of AIDS treatment, and the fact that the medical scheme for judges and members of parliament limited AIDS benefits to R800 a year, especially since other chronic ailments such as high blood pressure had a cap of R10000, the author had approached a judicial colleague in Cape Town and expressed his concerns about the discriminatory policy. However, despite promises to review the AIDS cap, the limit stayed at R800. Eventually, when he was ill, but with the new ARVs coursing through him, Justice Cameron wrote an assertive letter noting the inherent discrimination in the AIDS cap, copied to the then judge-president and eventually, the AIDS cap was removed.
Later, when Edwin Cameron disclosed his HIV status, it was before a Constitutional Court commission, effectively in a job interview, it was with some trepidation – but resulted in liberation. The response has been largely positive, empowering, and supportive. Work has continued. Income has not been curtailed. The impression one has at first is that the right thing happened – a happy conclusion is possible.
However, upon further reflection, what stands out most profoundly is a simple fact: the author knew his rights. Well, one hope’s he would – he is a Judge after all. But the argument is there nonetheless. One of the 1998 International Guidelines on HIV/AIDS and Human Rights is that States should implement and support legal support services that will educate people affected by HIV/AIDS about their rights. Witness affirms this guideline; one comes away with the breathless and desperate need to see to it that more people know their rights, and are empowered to fight for those rights.
This brings me to ‘decent healthcare’. Governments have been slow to strengthen their own national health structures. The African Union Commission reported to the Heads of State in 2005 that only 3 in 10 Africans have regular access to essential medicines; and only 1.3 percent of the world’s health workforce while it suffers 25 percent of the world’s disease burden[1] – with underdeveloped African countries subsidizing the West by an estimated $500 million a year through the migration of health workers.[2] Condom supply is around 3 condoms per year per potential user. In its 2003 report on health services, the World Health Organization stated that:
“The ministry of health of Botswana estimated that achieving universal coverage of antiretroviral treatment alone would require doubling the current nurse workforce, tripling the number of physicians, and quintupling the number of pharmacists…Lesotho reported the public sector nurse vacancy rate at 48% in 1998, and Malawi at 50% in 2001.” [3]
It is no wonder that so few South Africans have access to ARVs through government health clinics and hospitals.[4] And this is not a tangential issue – weak or non-existent health infrastructure and social services, over nearly half a century, have fuelled the pandemic – and Africa’s overall poor health. As Tony Barnett and Alan Whiteside have noted, Africa has experienced a state of ‘abnormal normality’ that has fed the growth of HIV/AIDS. [5] A recent report from Christian Aid estimates that Africa has ‘lost $ 272 billion in the past 20 years from being forced to promote trade liberalisation as the price for receiving World Bank loans and debt relief’. [6] In terms of the apartheid regime, it undoubtedly had very little interest in the well-being of all South Africans. But it is still shocking that even today in most of the world’s developing countries, foreign aid covers over half of the costs of healthcare. [7] I wonder how we are able to live as ‘empowered citizens’ under these circumstances. Theories of behaviour change show that if people feel trapped in their socio-economic circumstances, they are less likely to feel a personal motivation or sense of efficacy for change. [8] This lack of social infrastructure is a unique vehicle for disease and ignorance.
But as with all things, HIV/AIDS, the explanations for its causes, the prescriptions for its cure, there are further contradictions. Witness presents a clear and precise final word which is part of the great contradiction: if everyone had food, housing, water, if gender relations were equal, if all the environmental and social forces were controlled to ‘prevent’ HIV transmission and keep people healthy after they contracted the virus, a medical approach would still be necessary and essential. Let us just imagine utopia – perfect peace and prosperity. But millions of people would still have sex – and without a protective barrier such as a condom they would contract HIV. Millions more would still get sick (the author did) and die without antiretroviral treatment. AIDS denialists refuse to recognise this. Without the help of medical microbiology, without evidence-based science, the pandemic cannot be contained.
However, socio-economic or cultural position does not predict adherence to an AIDS drug treatment regimen. Despite the difficulties inherent in resource-poor settings, where access to clean drinking water, food, transportation to health clinics (or the availability of health professionals and facilities) is poor, despite these constraints, people can and do take their medicines. Witness bears testimony to this. The racist and demeaning comment that Africans are too illiterate or primitive to adhere to treatment regimens is more denial. The evidence is around us in the work of Paul Farmer and Partners for Health in Haiti ; it is at the ‘Doctors without Borders/Medecin Sans Frontier’ ARV programme in Khayelitsha, and in the very lives of people throughout the continent who adhere to treatment regimens and like the Biblical Lazarus, rise from the bed of death. So, indeed at the centre of the book is this simple fact: that some people live because they have access to life-saving AIDS treatment, and others do not.
Before I finish, one last observation as a gesture of gratitude to the author, borrowed from Professor Morrison again, but relevant to the importance of writing about HIV/AIDS, and more importantly the importance of bringing forth more books like Edwin Cameron’s Witness to AIDS
[1] African Union Commission, Department of Social Affairs, “Consideration of an Interim Situational Report on HIV/AIDS, Tuberculosis, Malaria, and Polio: Framework on Action to Accelerate Health Improvement in Africa,” Fourth Ordinary Session of the Assembly of the African Union, Abuja, Nigeria, 30 –31 2005.
[2] Dugger, C. “Africa Needs a Million More Health Care Workers, Report Says,” The New York Times, New York, NY, 26 November 2004.
[3] MOH Botswana, McKinsey Co. Increasing Access to ARV Treatment, MOH: Gaborone , 2002 and Liese B, Blanchet N, Dussault G. The Human Resource Crisis in Health Services in Sub-Saharan Africa,
Washington : The World Bank, 2003, in World Health Organisation and World Bank, “Improving Health Workforce Performance, Issues for Discussion: Session 4,” High Level Forum on the Health Millennium Development Goals, Geneva and Washington : WHO/The World Bank, December 2003, pp.2.
[4] Henk Rossouw, “The Truth Needs Time,” The Ruth First Memorial Lecture, Mail and Guardian, Johannesburg, 26 August – 1 September 2005.
[5] Barnett, T., and Whiteside, A., AIDS in the Twenty-First Century: Disease and Globalization, Hampshire and New York : Palgrame MacMillan, 2002, p.129.
[6] Mark, C, “Commentary: How the G8 Lied to the World on Aid: The Truth about Gleneagles Puts a Cloud Over the New York Summit,”The Guardian, London, 24 August 2005.
[7] International Peace Academy (IPA), “Global Public Health and Biological Security: Complementary Approaches”, Meeting Note: Support for the Follow-up to the High-level Panel, IPA: New York , April 2005.
[8] For coverage of the debate on self-efficacy, see literature on the rates of success of the Love Life Campaign, for example, Harrison, D., “loveLife: Getting them young, keeping them alive,” Mail and Guardian, Johannesburg, 26 August – 1 September 2005.
Charles Leonard - Popmatters - 20 May 2005
Edwin Cameron is one of South Africa's new heroes and you can take Nelson Mandela's word for that. Cameron is one the country's most respected judges, and he has just published a truly compelling book, part frank autobiography, part incisive analysis, called Witness To AIDS (Tafelberg Publishers, 2005). Cameron is the only public representative to have openly declaring that he is living with AIDS. "AIDS and the stigma attached to it remain one of the greatest challenges for all of us wherever we live," Nelson Mandela wrote in the book's foreword, "and it's voices like Edwin's that will remind us, and keep reminding us, that no one should sleep easily until the disease is defeated."
When Cameron was diagnosed with AIDS in 1997, pharmaceutical companies charged excessive prices for ARV drugs. They also jealously protected their intellectual property rights, making it difficult for poor countries to use their acquired knowledge to produce and distribute the drugs. "Their commercial interests - and they claimed, their ability to carry out further expensive life-saving research -depended on the huge profits that patent exclusivity brought them," Cameron writes in his book, "And Western governments, especially the United States, supported them."
In wealthy countries, public health services could buy these expensive drugs for their patients. But in Africa these exorbitant prices were, as Cameron put it "a death-delivering obstacle". "In this setting my own position was one of exceptional privilege," he acknowledges about his 1997 pre-tax earnings of R6.14 (roughly $4,000 US) per month. "This put me in an income bracket beyond the dreams of most of Africa's 700 million people - and also of most of the continent's 30 million people living with AIDS and HIV."
The drugs were working for Cameron, but he still could not go public about his status because of the stigma attached. "For stigma - a social that marks disgrace, humiliation and rejection - remians the most ineluctable, indefinable, intractable problem in the epidemic. Stigma is perhaps the greatest dread of those who live with AIDS and HIV - greater to many even that the fear of a disfiguring, agonising and protracted death . . . What is perhaps most poignant and most inpenetrable about stigma is that some of its impact seems to originate from within. The external manifestations find an ally within the minds of many people with HIV or AIDS."
Around Christmas time 1998, a 36-year-old South African woman, Gugu Dhlamini (her real name), was stoned and stabbed to death in one of the townships of the coastal city of Durban. Shortly before her death Dhlamini told Zulu-language radio listeners that she was living with HIV. Three weeks later members of her own neighbourhood surrounded her house and accused her of shaming her community by announcing her HIV status. Dhlamini's death prompted Cameron to go public "She died in hospital - her body broken not by the HIV she faced with such conspicious courage, but by the injuries her neighbours inflicted on her." Her killers still walk free, because the prosecution had to drop charges for lack of evidence. But Gugu Dhlamini's name has been added to those who fell in South Africa's new struggle - the one against AIDS and stigma.
iThemba Newsletter - October 2006 edition
AN INSPIRATIONAL LEADER
Judge Edwin Cameron talks about hope, life and being HIV positive
South African Supreme Court of Appeal Judge Edwin Cameron is no stranger to the
issues of HIV and AIDS in South Africa, having been one of the earliest high profile figures
to go public and disclose his HIV positive status. His current standing as a moral and
intellectual leader in the fight against the epidemic led him to write his book, Witness to
AIDS, and takes him on lecture tours to various institutions, where he seeks to inform
government, the business world, civil society and the public at large about the HIV and
AIDS epidemic. His thoughts on stigmatisation and treatment have been described as
particularly frank and insightful, and Judge Cameron remains a creative contributor to the
civil discourse surrounding HIV and AIDS in South Africa and abroad.
The iThemba editing team managed to track him down for a feature article, and we are
proud to present in this issue an edited version of a lecture given by Judge Cameron in
August this year entitled “Leadership Lessons from Surviving an Epidemic”
Johannes de Villiers - Die Burger - 9 April 2005
NUWE INSIGTE
BELIG RAS, SEKS EN STIGMA
JOHANNES DE VILLIERS
WITNESS TO AIDS, deur Edwin Cameron, NB Uitgewers, Kaapstad, 2005. (Slapband, 240 bladsye, ISBN 0624041999, R125).
MEER as tien jaar het verloop sedert regter Edwin Cameron vasgestel het hy het MIV, en sedert hy bereid was om dit openbaar te maak.
Nou, jare ná sy erkenning, is hy steeds die enigste openbare ampsdraer in Suid-Afrika wat sy MIV-status bekend gemaak het, skryf Cameron in dié memoires oor sy betrokkenheid by die afgelope dekade se vigspolitiek.
Hoewel die mees aandoenlike dele (soos gewoonlik in memoires) seker gaan oor Cameron se persoonlike lewe -- sy jeugjare in 'n kindertehuis, sy verwarring nadat hy in die 1980's meegedeel is hy het MIV -- is die dele wat 'n mens bybly sy besinning oor die rol wat stigma, ras en seksualiteit in SuiderAfrika gespeel het.
Suider-Afrika is die enigste wêrelddeel waar die reuse heteroseksuele vigspandemie wat in die 1980's voorspel is, wel plaasgevind het. En die vrees dat dï t tot die onregverdige stigmatisering van Afrikane se seksualiteit sal lei, is een van die onderliggende redes vir die vigsontkenning wat 'n volwaardige respons tot die epidemie in dié gebied so lelik vertraag het.
Hoekom is die sienings van vigsafvalliges (wat onder meer die verband tussen MIV en vigs ontken) so gewild in Suid-Afrika dat dit beleid oor die pandemie so sterk beï nvloed het? vra Cameron. Die antwoord, meen hy, lê in die verband tussen ras, seks en stigma.
As dié seksueel oordraagbare siekte soveel erger in Afrika suid van die Sahara is, en as redes soos migrasie en oorloë en armoede nie voldoende verklaar hoekom dit hier soveel erger is nie, dan laat die erkenning van dié streek se vigspandemie by baie Suid-Afrikaners die vrees ontstaan dat dit die idee gaan skep dat daar iets "anders" aan Afrikane se seksuele gedrag is.
Cameron takel hierdie onderwerp in een van die middelste hoofstukke van sy boek, en hoewel hy uiteindelik nie juis 'n volwaardige verklaring gee vir Suider-Afrika se groot las nie, is dié ontleding van die ver band tussen private seksuele stigma en dit wat in die hoogste beleid hier skeefgeloop het, die interessantste aspek van hierdie boek.
Die stryd om goedkoop antiretrovirale medisyne in Suid-Afrika beskikbaar te kry en ander onderwerpe word ook breedvoerig, meestal in die eerste persoon, bespreek.
Dit is 'n boek wat nuwe insigte sal bied aan enigeen wat met die MIV/vigs-pandemie in Suider-Afrika (dalk ook elders) gemoeid is. . Johannes de Villiers is 'n gesondheidsverslaggewer by Die Burger.
Johnny Steinberg- Business Day - July 11 2005
IN HIS book, Witness to AIDS, Edwin Cameron tells a ghastly story about Botswana . Knowing that up to a third of its population had HIV or AIDS, and that about 100 000 people were in urgent need of drugs, in 2001 Botswana's government began to offer free anti-retroviral treatment to every citizen with AIDS. Yet, by late 2003, only 15 000 people had appeared at public health facilities for free medication. Why?
"Stigma," is Cameron's answer. "People are too scared — too ashamed — to come forward and claim what their government is now affording them: the right to stay alive."
Indeed, he says, "in some horrifically constrained sense, they are 'choosing' to die, rather than face the stigma of AIDS and find treatment".
Later in the book, Cameron tells of his gardener, to whom he gives the pseudonym Gladwell. Gladwell is chronically ill. He says he has tuberculosis, and is on prescribed medication, but his condition deteriorates.
Cameron asks him if he has had an HIV test. "I have," Gladwell replies. "It was clear." His health keeps declining, and Cameron keeps urging him to have a test: he still says he is "clear".
Gladwell knows that Cameron himself is HIV-positive, knows that antiretrovirals have saved Cameron's life. He returns to his family in Zimbabwe . Five weeks later he is dead.
In retrospect, Cameron chastises himself: "Although I thought that I
was offering him help, and thereby the choice of living, in Gladwell's mind he had no choice. The stigma associated with AIDS left him no choice...
"I should have made him an appointment with Dr Johnson," Cameron writes. "I should have told him I was leaving for Dr Johnson in 10 minutes. I should have told him he was free not to come. But I was going and I wanted him to come — I wanted him in the passenger seat of my car.
"I should have told him that my doctor would diagnose, and if necessary treat him, if it was AIDS. And that I would help him deal with his fears and loneliness if it was."
Cameron's identification with Gladwell, and the debt he feels he owes him, is striking. For Cameron tells us that he too might have died of stigma and fear; he too lived for a long time with secret shame.
There but for the grace of God, Cameron was Gladwell; his identification with his former employee is thick, complicated, and deeply personal.
Why do people die, not from a somatic disease, but from their relation to it? Why do people die of stigma and fear? It is a huge, perhaps impossible, question, and Cameron can be forgiven for taking only a gentle stab at it.
But Witness to AIDS is a book of advocacy, and Cameron does have a good deal to say about what this spectacle means for human agency and solidarity.
People dying of stigma, he suggests, are no longer autonomous agents invested with the freedom to choose (except "in some horrifically constrained sense"), for they have lost their connection to their most vital self-interest, that of staying alive.
But that self-interest still exists, even if its bearer has lost sight of it, and it is thus incumbent upon us to substitute for it, to steer the sufferer to the choices he would have made had he been free to choose.
Cameron is not suggesting that we force-feed drugs to the ill. He is suggesting that at the global level of public health policy, we do what Cameron, at the micro level, imagined he ought to have done for Gladwell; to lead him, quite assertively, to the conditions of his own survival.
Cameron's imagined relationship with Gladwell also seems to serve as a model for the sort of human solidarity he is talking about. He is suggesting that we lend our own capacity to live to those dying of stigma, that the capacity to live is, in a sense, a resource to be shared.
It is a strongly communitarian and, indeed, a moderately illiberal, position. And it is striking for being made in SA, in which the bonds of social solidarity, measured by such indicators as our rates of murder and incarceration, are alarmingly thin. Indeed, our national response to AIDS — ambivalent, anxious, wounded and aggressive — is another symptom of the frailty of the bonds that bind us.
Dealing as it does with life and death, Cameron's book is among the most substantial contributions to the concepts of national identity, community and solidarity we have had in 11 years.
Josef Talotta - Business Day - 29 April 2005
Supreme being
Supreme Court of Appeals judge, and author, Edwin Cameron may be ‘atypical’ but he is no contradiction.
The gravelly newscaster-ish voice confirms on the phone: “11am at Café, in Melville.I’ll cycle down from Brixton. See you then.”
I’m perched outside on the terrace, sneaking a cigarette when he arrives.
He’s punctual to the minute. But it turns out his bicycle has four tyres and says “Volvo” on it.“So, is that what you call a bike?” I exhale. He looks at me, with steel-blue eyes, getting a feel for the situation. He’s lightening quick. Maybe quicker. “It’s raining, in case you haven’t noticed,” he lets fly, pseudo-sarcastic — eyebrows arched and eyes twinkling. Point. And not only that, it’s also cold and grey.
“Edwin Cameron,” he says, extending a large, warm hand with a matching smile. We exchange pleasantries, and I suggest we move inside. “Oh no,” he says, “Go ahead, finish your cigarette. I also enjoy a Camel Light once in a while.”
It takes mere minutes to pass judgment. Guilty, as charged — the man’s got a wicked sense of humour, lobbing back Karoo-dry retort quick and hard whenever a facetious comment is thrown his way.
Time for silly stuff: “How do you unwind, Edwin?” I ask, “Do you enjoy the odd drink with your odd Camel Light?”
“Well, nothing odd about it, really,” he answers. “Yes, I’ll enjoy a glass of whisky once in a while. And maybe a half bottle of wine when I’m having dinner with friends. Nothing wild. And I might enjoy a glass of wine at night to relax.”
“You have a glass of wine every night?” I press, pen poised on the Moleskin notebook, “You’re saying you have a glass of wine … alone … every single night? So, what you’re really saying is that you’re an alcoholic?”
He immediately gets me. And laughs, “Listen, don’t put words in my mouth!” and calls me a few choice, unprintable names. “Mr Talotta, I can assure you I’m hardly the type to get drunk! An alcoholic, indeed!”
Cameron is fit and dressed in a blue Blake-cotton shirt, with a cardigan over it, giving the impression of a sporty, over-grown schoolboy. His consent to adulthood? An old “AIDSWalk New York 2001”baseball cap. “Yeah, I did the walk (an annual fund-raising walk) a few years back,” he says, removing the cap to double-check the date.
We settle in. “Hmmm, so where should we start?” I ask. He leans forward, repeating me, “‘Where do we start?’ What kind of question is that? You really want to make this difficult for me, don’t you?” He almost caught me — giving me a taste of my own medicine — before breaking into laughter.
Time for serious stuff: We discuss his new book, Witness to AIDS, which is enjoying rave reviews and brisk sales throughout the country. More importantly, we discuss its motivation, expectation and results. The sadness, of course, is that the book had to be written at all. With the dubious distinction of having the world’s largest population of people living with HIV/AIDS,SA has only one figure holding public office who’s “come out”as an HIV-positive person: Edwin Cameron. And it’s something aboutwhich Cameron is well aware. “I’m pretty atypical of the epidemic in Africa, being a gay white male who’s relatively affluent,” he says.
“But what I have in common with poorer people, and rural people, is fear. Of course, I’ve let it all out before, through speaking. But writing about it was probably the most difficult thing I have done, especially chapter two, which explores the stigma of HIV and AIDS.”
In it, he writes about his battle to “come out” with his HIV status to friends, family and colleagues: “One emotional evening in early 1987, shortly after returning from Harvard,” he writes, “I managed to confide in my friend and Wits law associate Carole Lewis, now a colleague in the Supreme Court of Appeals. I confided, after a time, in the person with whom I fell in love the next year. To a wise and patient private counsellor, and to a Wits doctor doing bravework in the field, Prof Ruben Sher, I spoke. But not to my family or troops of friends. I feared their reaction with a ghastly, sickening, isolating loneliness. For more than three years I lived with it solitarily.”
Ultimately, he told his mother. “I brought the conversation around and spoke gently to her. When I had finished there was a quiet pause. She continued looking calmly, almost abstractedly, at the flower beds. After a moment she glanced at me, and quietly murmured: ‘I thought as much, my boy.’ Later that week, when (sister) Jeanie discussed the implications with her, she became distressed. But she started wearing the red, furled ribbon of AIDS solidarity. And her friends splendidly followed suit. She died two years later, ten months after we had celebrated her 80th birthday.”
While gut-wrenchingly emotional at times, Witness to AIDS is hardly a boo-hoo-hoo diary. Rather, it’s what Cameron’s friend (Treatment Action Campaign activist) Zackie Achmat calls “an abiding commitment to social justice”.
Cameron provides a human face — even if it’s that of a “pale male” — to a disease which is arguably the most horrific catastrophe to challenge our country, continent and, indeed, the modern world. In that sense, his voice speaks for millions of infected South Africans. And it’s a responsibility Cameron doesn’t take lightly.
Witness to AIDS’s media coverage has been impressive, which is particularly important in a country where the disease remains an abstract concept for far too many. “It’s not only gratifying,” says Cameron of the book’s success, “it’s also affirming.” While grateful for coverage in the country’s “intellectual” publications, he’s particularly excited about his upcoming interviews with more “accessible” ones like Drum.
“It breaks stereotypes,” says Cameron, “and people need to be informed.”
While he might have expected the book to sell in academic, medical and AIDS-activist circles, Cameron was warned by his publisher not to expect too much from the greater market, “She said the serious book market moves 3000 to 4000 copies,” says Cameron, “so if we sold that number, it’s great. I’ve just heard there are only 580 copies left in the country and it’s going into a second, emergency printing two weeks after its launch.”
SAis known for being the world’s first country to protect the rights of its gay, lesbian and trans-gendered communities through its constitution (other progressive countries have protected these communities through supplementary laws and addendums), something for which Cameron occasionally takes flack.
“When people say the constitution is a document thatbenefits mostly white-and-wealthy gays and lesbians, they’re wrong. It’s also important to young people in the townships. They know they’re protected by the constitution and they’re proud of it.”
“Most importantly,” he stresses, “the constitution is a document that’s a contract between South Africans. We’re still a desperately unequal society and we need to fulfil its promises of equality to secure stability.”
A great source of Cameron’s stability is his friends and family. While Cameron misses his mother, he’s still very close to his remaining family, and to his legion of friends, who he sees as extended family.
“My friendships are very intense,” he says. “As a gay male without a partner, friends often become your family.”
In a country where people still keep multiple cellphones for multiple lives, Cameron has a thoroughly integrated life — mixing colleagues, family and friends. “Good observation,” he muses, “When I became an advocate in 1983, I came out and told my colleagues and clients I was gay. So, sure, I mix and match my friends who range from gays and lesbians, former Wits academic colleagues and young black queens to transvestites, the judiciary and my family.”
“But,” he notes, putting things into context, “we’re a country of 44-million people of diverse and divided backgrounds. It’s important to try to integrate one’s capacities in a society like ours.”
As a Supreme Court of Appeals judge, Cameron spends half the year in Bloemfontein. “It’s sometimes hard,” he says, “because it’s a commuter lifestyle.”
Not that he’s complaining: “Bloem has lots of good restaurants but I lead a fairly monastic life there. We work extremely hard. We (Supreme Court of Appeals judges) tend to work most evenings, and most Saturdays and Sundays. But Bloem has been good for me. It’s calmed down the pace of my life. In Jo’burg I can receive invitations to dinners five or six nights a week but, with my being in Bloem, it’s tapered off a bit because people don’t know where I am.”
That said, he knows exactly where he is, as he recently pointed out in the Sunday Times: “I feel a sense of purchased time. And it’s precisely that sense that gives me my passion about giving other people the same break.”
Ultimately, Cameron’s cool intellect and breezy humour are far out-weighed by his unwavering sense of ardent humanity. Balance is the key. He’s an out-and-proud, HIV-positive, gay, white, male, Supreme Court of Appeals judge serving a democratically elected African government. SA, ayi, you gotta love it.
(Oh, and for the record: Cameron drank tea — and didn’t smoke).
Witness to AIDS (Tafelberg), by Edwin Cameron, is available at bookstores nationwide.
Justice Carole Lewis – Bloemfontein launch – 10 May 2005
Edwin Cameron’s moving and powerful account of his life with AIDS is a story not just about being a survivor and a witness to an epidemic that engulfs this continent.
It is also a story about personal courage. It is about a man with a public profile who made the decision to reveal his medical status in the full knowledge that it would bare his personal life to South Africans and many others worldwide.
It is about a man who knew that he would attract opprobrium and the wrath of politicians.
Yet he did it because he thought it important, as a judge, to disclose his HIV/AIDS status: to tell the world that he, a person in an influential and responsible public position, was living with AIDS.
He has, I believe, been the only public figure in this country to reveal that he is living with the disease. In Witness to AIDS Edwin describes his decision to disclose his statement at an interview for a position on the Constitutional Court, and the emotional trauma that underlay his decision. The cost to him then must have seemed incalculable. But the reaction -- of admiration and respect for him -- was extraordinary too.
His courage then has had a significant impact on how many of us think about AIDS and what living with it means. It also tells us much about how those who die from it because they have not been afforded the treatment that they need. I have been a witness to Edwin’s courage for many years now. He told me that he had been infected with HIV very soon after his diagnosis.
I remember the early evening when he phoned me at home and asked if he could visit. He needed to talk, he said. Despite the fact that AIDS was still hardly known as an illness in South Africa, I feared instantly what it was he would tell me. But I could not comprehend the reality of the diagnosis and its implications. I was in denial, he said, when I suggested the test results might be wrong.
He, on the other hand, had the insight and the wisdom to face the reality, and face it he did, not only by dealing with his own illness, but by leading the AIDS activist movement. Edwin was at the forefront. He founded the AIDS law project, he spoke on public platforms; he addressed conferences; he brought to many the awareness of what a full-blown pandemic can do to a people. And all of that time he was fighting his own physical battle, and the fear of illness and death. But his courage did not wane.
Edwin has never wavered in the face of opposition, denialism, unscrupulous drug companies, an intransigent government. The publication of Witness is an act of enormous courage too. I read a draft of the first few chapters in June and July of last year. I had qualms about the book. ‘Are you ready and emotionally prepared to bare your soul and your emotions and your private life to the public not just on a lecture platform or in a media interview, but in a book that gathers it all together and puts you so vividly on display?’ I asked. ‘Are you prepared to withstand the disapproval of colleagues, not just on the bench, but in the legal world? Have you thought that there might be a view that it is inappropriate for a judge not just to express views on an issue but also to make known, while still in office, so much about his private life? The public might come to regard you not just as a judge but as a fallible, vulnerable person. By publishing the book, you choose to put your humanity on display. I believe it is a legitimate choice, but not one that others would necessarily make. Your reasons for doing so are powerful and valid, but I fear the reaction.’
Edwin clearly considered that his reasons for writing in such a personal and revealing way did outweigh the disadvantage of any possible perception that a judge should not bare his life. He was right. The narrative is powerful and the story is intensely moving. It should be told. And I have been proved wrong.
Witness to AIDS has been enormously well-received.
Today I saw a review in the Natal Witness which has said so eloquently what I would like to say tonight. The author writes, arguing that Edwin is heroic, that the book is superb: ‘ - a relentlessly honest, solidly-argued, meticulously referenced, perceptively illustrated, at times philosophical and frequently gripping narrative. The book interweaves Cameron's legal work with his personal experience of HIV and the wider story of a national epidemic and the government's response to it. Issues such as stigma, the perilous intersection of race, sex and death in Africa, President Thabo Mbeki's confounding flirtation with Aids denialism, the "hideous wavering" at critical times by the South African leadership on the issue of drug treatment, the Constitutional Court's role in securing treatment for HIV-positive pregnant women and the weighty matter of when a judge can speak out on contentious political issues - all of these complex and, at times, painful issues are pursued with sensitivity, reason and balance.’ Edwins account of his life, and particularly his life with AIDS, has evoked powerful emotions in people, many of whom thought they knew Edwin well. It has made some weep – weep over the sadness of parts of his life, weep over the story of his living first with HIV and then with AIDS. At the same time it speaks of a commitment to life, and tells us that with the help of drugs, and drug companies and governments, the epidemic can be managed. It tells us that AIDS can be controlled. It tells us of hope. And above all it tells us about a man who has had the courage not only to deal with the fears that once overwhelmed him, and the ill-health that for a time beset him. It bears witness not only to a scourge that threatens our continent. It tells us about the importance of having the courage to place on record, so that we do not forget, the history of the AIDS epidemic in South Africa, and of our government’s failure – largely through denialism – to deal with it properly. Witness is an important book. It is a beautifully written account of aspects of Edwin’s life and a powerful argument for the appropriate treatment of HIV/AIDS.
I shall read it again and again, and I shall look at the rather wistful picture of my dear friend on the cover. I shall be reminded of his courage.
Justice Kirby - (2005) 79 Australian Law Journal 795 - September 2005
To all appearances, Edwin Cameron is a conventionally successful lawyer. He grew up one of the privileged ‘whites’ in apartheid South Africa . He attended a top high school in Pretoria . From university he was elected a Rhodes Scholar and spent three years at Oxford . He returned to a successful commercial practice at the South African Bar. He was offended by things he saw and left the Bar to teach law at the famous Witwatersrand University in Johannesburg . He also practised public law. Like other leaders of the movement for freedom and equality in his country, he appeared in important court challenges against the regime. He was criticised by the Minister of Justice in 1987 for unprofessional conduct in questioning some judicial decisions. But in those days, that was a badge of honour.
When Nelson Mandela assumed office as President in April 1994, and a new Constitution was introduced, Cameron was quickly recognised. He was nominated to the High Court in December 1994. Later, he came under close consideration for a vacancy in the Constitutional Court . He was passed over on grounds (with which agreed) of assuring a better racial mix in the South African judiciary. Soon he was appointed to the Supreme Court of Appeals (formerly the Appellate Division), the judicial post he still holds. This is the final court for all non-constitutional appeals in South Africa . In the English speaking world it is a famous court. Justice Cameron is a leading member of it. His opinions are widely admired for their technical skill, mixed with a compassion learned from the apartheid experience.
Yet despite these externalities, Edwin Cameron is no conventional judge. This book, a mixture of memoir and action statement, is proof of his sharp intellect, searing honesty, sensitivity and passion for justice. That passion still burns more than a decade since apartheid was interred. Now Cameron has a new concern. It is AIDS. And for him, it is not just a matter of theory. It is a personal reality. Edwin Cameron is a judge living with HIV.
Justice Cameron would not be living today but for his access to the antiretroviral treatment that changed his life and gave him a “second chance”. His knowledge that this is so fires him up to be a witness to AIDS for the whole of Africa and, indeed, the world. In this role he is particularly important. As he points out, he is still the only senior public officer holder in his country to be open about his HIV status. Come to think of it, there are few others in Africa or elsewhere who have taken the same step: opening up about themselves. Being an example. This book takes us on his journey to that step. For anyone who wants to know what HIV/AIDS is really like, on a personal level, this book is compulsory reading.
Witness to AIDS does not follow the conventional form of an autobiography. It is like an Ingmar Bergmann film. It has a structure; but it is full of flashbacks and vivid stories as this distinguished judge explains how he learned of his condition and what it meant for him, his life and work.
The first chapter begins with the day in October 1997 when he found that he could no longer climb the stairs from the judges’ common room in the High Court in Johannesburg to his chambers two floors above. He knew that this was a bad sign. In fact, it was a sign that the human immunodeficiency virus (HIV) that he had acquired at Easter in 1985 had progressed to acquired immunodeficiency syndrome (AIDS). He also knew that, in Africa, the mean survival of people manifesting AIDS was between 30 and 36 months. It was a cause for panic.
Fortunately, Cameron had access to the best medical care. He scanned the literature and knew that in the United States , in July 1996, Dr David Ho had reported the remarkable capacity of a combination of three drugs to stop the virus in its tracks, at least in many patients. So the race began for him to get access to the new treatment. It cost him $US600 a month. This was a third of his after tax earnings as a judge. Most people in South Africa could only dream of such treatment. It was out of their reach - and the government did nothing to make it available.
Edwin Cameron tells the story of the routine cases he was hearing in court at the very time when he was struggling to survive. Poets might write movingly about impending death. But for him, “reality is less poetic. … It was fetid, frightening, intrusive, oppressive. Too often I had seen friends and comrades die of AIDS. Had seen how day by day, week by week, they would redefine wellness, adjusting it downwards each time but never losing its goal, no matter how wasted, disabled or physically dysfunctional they became. Getting better always seems to remain attainable, even when, from the outside, it was plain that it no longer was”. Unless he could get the new therapies, this was the journey ahead of Edwin Cameron.
But he did secure the new drugs. And when they came “there was only one word for it. It was glorious. The drugs were working. I could feel that I was getting healthy again. I knew that I would be well again. That, in turn, spurred my inner confidence. Psychological well being had a pronounced psychic effect. If the drugs were working, the virus was no longer multiplying within me”.
There are few better descriptions of what it is like to be living with AIDS and to gain access to the new drugs and to new hope. Andrew Sullivan’s essay “When Plagues End” in his book Love Undetectable (Vintage, 1999) is a rival. But Cameron tells it as it is. His story helps to explain the feelings evident in the chapters that follow.
The second chapter describes the way the author learned of his original diagnosis in 1986 and how HIV gradually took its toll on him:
“AIDS is smell and feel - of sweat and grime, disintegration, excrement, waste. Human waste. AIDS is feeling - painful sharp tingling burning heavy dull weakening wasting enervating … bereaving. AIDS is fear. It is breathless and nameless”.
Cameron describes the way he went about his daily work whilst the horrifying reality was always close. He does not spare himself:
“I was tainted, soiled, polluted. My blood and body were fouled with the most conspicuously vile infection known to recent human history”.
He tells of the funerals he attended and the violence reported in the African media against hapless victims in the townships. Fear was visited on the heads of victims as if removing them from sight would make AIDS go away. The stigma that stubbornly clings to HIV throughout Africa, and the world, are described through the author’s personal experience and the sad cases that he recounts from the lives of people who had no access to the therapies that, at that moment, were keeping him from death.
This leads Cameron to the third chapter addressed to “Race, sex and death in Africa”. He gives the statistics of sero-conversions throughout the continent, ironically peaking in the newly blessed South Africa with its fine infrastructure and independent courts. Between 4 and 5 million of his fellow citizens were in the same boat as he.
But what was different about South Africa was the grip that “dissident” scientists secured upon the mind of Thabo Mbeke - the brilliant young economist and freedom fighter who succeeded Nelson Mandela to the presidency. For many dissidents, the cause of AIDS was poverty and the environment. Talk of a virus was just an international conspiracy of bureaucrats, pharmaceutical companies and those who would denigrate Africans as “sex mad fiends”.
This introduction is a prelude to the fourth chapter on the “Tragedy of AIDS Denialism”. Here, Cameron tries to explain the apparent conversion of Mbeke to the views of a small coterie of “denialists” whose message the president was all too glad to hear. At about this time, Cameron was asked to give a lecture at the International Conference on AIDS held in Durban in 2000. The lecture honoured Jonathan Mann, the brilliant first Director of the United Nations response to AIDS. Cameron took the opportunity to express his grief and sense of bitter frustration that, in the new country for which he had fought, the leaders were not facing the reality of AIDS. He felt that he was living proof of the power of the new therapies. But because they depended on the hypothesis of HIV and were expensive, the denial meant that millions were bereft of drugs that could save lives and infuse the living with new quality of life.
So Edwin Cameron reaches his fifth chapter “A Judge is Called to Witness”. He begins this with a description of his attempts to see Mandela and de Klerk in the early days of the new government. Soon the denials took hold of the administration, particularly after President Mbeke was sworn into office.
At about this time, Edwin Cameron gave a lecture to the General Council of the Bar in London . His visit to England coincided with the trial of David Irving’s defamation action based on his holocaust denial. Cameron saw a parallel in the stubborn refusal of intelligent people to face evidence, reality and truth. He said so both in London and in South Africa . It was then that he suffered the second attack by a Minister of Justice in ten years. This time it was the Minister in the new South Africa . He was castigated for speaking out as a judge. Yet he felt a need to do so, drawing on his personal knowledge and experience. It was a very uncomfortable time for him. He outlines the reasons why judges should generally not become involved, beyond court necessities, in matters that put them at public odds with politicians. He holds the view that it should not be done except for “compelling justification”. Yet Cameron knew enough of the silence of the German judges during the Nazi Reich and the French judges during Vichy . People, including no doubt some lawyers, may be critical of his stand. But this book leaves one in no doubt that he agonised about his duty and felt obliged to speak in defence of the voiceless.
Meantime, in South Africa , important decisions had been delivered by the Constitutional Court . One concerned discrimination by the national air carrier on grounds of HIV status immaterial to work capacity. Another, of profound importance, concerned the right of new born babies and their mothers to access nevirapine, one of the antiretrovirals that, for less than a dollar, can radically reduce mother to child transmission of HIV if administered immediately before and following birth.
Eventually, even Mbeke seemed to buckle under the weight of world-wide scientific opinion. Five thousands of the world’s leading scientists criticised the dissidents and told the President that the established link between HIV and AIDS was “clear cut and unambiguous”. In 2004, Mbeke promised “treatment” for South Africans living with HIV/AIDS by 2005. As Cameron points out, the promise was not accompanied by recantation. Nor were “antiretrovirals” mentioned. Full delivery on the promise has still to be attained. For Cameron, this has been a most painful experience amidst the new found freedoms of the country he loves and serves as a judge.
There follow two excellent chapters, written by the author with Nathan Geffen on the technical, but important, questions of access to therapy in a world of patents that prop up the prices of essential drugs. Edwin Cameron asks how can the poor of Africa gain access to the drugs that offered him a glorious and virtually immediate relief from the downward spiral into the vortex of AIDS. Court decisions, international agreements and political action at home are offered as the solution. But for 20 million people living with HIV/AIDS in developing countries, especially Africa, change is happening too slowly and reluctantly to save many lives.
Cameron faces candidly the most acute policy problem now arising in HIV policy. It has a legal element. This is whether, in the context of available therapies, routine testing should be introduced to channel patients with HIV quickly to access to the new drugs. Many are critical of this strategy, fearful that the promise of drugs will be unfulfilled and the stigma of positive status all too real. On the other hand, proponents suggest that once HIV becomes a treatable condition, much of the stigma will disappear. Practical questions such as the assured provision of therapies and monitoring their effectiveness in countries of abject poverty fuel the fears of the cautious.
Edwin Cameron, knowing how the antiretrovirals can restore life, concludes, as I would, that a new strategy is needed. So long as this strategy delivers the lifesaving drugs to millions, a strategy of routine testing with counselling and the right to opt out, seem to be the way to go. Certainly, our world cannot continue to tolerate 3 million AIDS deaths a year. Contrast that figure with the deaths from global terrorism of which so much is written and said. Compare the energy and capital poured into that fight. Then it is realised that it is not just President Mbeke who has failed to give proper leadership to the world in the face of the most grievous human pandemic since the European plague of the fourteenth century.
The last chapter in the book begins with the shocking story of the death of the author’s sister Laura, killed in a cycling accident when she was eleven and he was seven. He recounts the funeral where his father was brought from prison to sit in the back row, a desolate man. This is typical of Edwin Cameron. Truly his is a book of warts and all. Everything is revealed. His parents’ separation. The sadness and isolation of his childhood in an institution for disadvantaged children. The “single and incautious episode” that led to his infection with HIV. The failure of a love affair. The imprisonment of his father. It is as if Edwin Cameron is crying out to Africa: ‘In the name of God, and in the face of AIDS, be honest. It is, after all, just a virus. It is an enemy of the whole human family. We will never overcome it if we are torn by shame, fear and stigma. Science will triumph. But we need to be honest to ourselves and to each other’.
Edwin Cameron’s honesty shines through every page of this book. When he was considered for the Constitutional Court of South Africa, he underwent an interview in a town hall, as is now the procedure for judicial appointment in that country. He disclosed not only his homosexuality (a matter of little import, expressly protected in the Constitution of South Africa). But he also told the selectors of his HIV status. It was a public declaration the like of which had not occurred before or since. He felt that total honesty was required for the judiciary - and for South Africa .
So far, Edwin Cameron’s example has not been copied elsewhere. But it sets the goal standard. It gives his words in this book a special integrity. Perhaps it is the reason why, even after Cameron criticised him at the Durban AIDS conference, Mbeke proceeded to confirm him as a judge of the Court of Appeal. Perhaps it is why Nelson Mandela, new convert to the struggle against HIV/AIDS in Africa, has called Edwin Cameron “one of South Africa ’s new heroes”.
This is an unusual book. It will be a long time before another judge writes a personal book on the HIV/AIDS experience. I doubt that I will live to read another such a book. Yet we must hope that, by Edwin Cameron’s experience, candidly told, the next such book will reveal how new drugs and therapies were developed which helped to conquer this latest epidemic. And how truth and political courage eventually secured action for the poorest of the poor, who are in the front line of death and suffering from AIDS, especially in the developing world, particularly in Africa.
Liz Gitonga - Sunday Nation, KENYA – 19 November 2006
Justice Edwin Cameron is perhaps better known in South Africa for fighting against HIV/Aids than judging cases in court.
A few years ago, he became the first high-ranking official to go public with his HIV-positive status in a country where the reality of Aids is still denied in some official circles.
Cameron is the author of an award-winning book, Witness to Aids, in which he recounts his individual struggles to cope with the illness.
"I hope that my public speaking, lectures and my book have helped people realise that HIV is not an unclean contamination, nor a moral judgement, nor a divine condemnation, but a simple viral infection — one that can now be fully medically managed. I hope, also, that my criticism of international drug companies (for extorting profits) will help in bringing down the prices of drugs and that my criticism of the government's denialism in the late 1990s led to a change in policy and opinion,'' . But the true credit in both these issues must go to activist organisations, to former President Nelson Mandela whose intervention on Aids after relinquishing the presidency made a huge difference." Justice Cameron told this writer during an editors' seminar on HIV/Aids in Johannesburg , South Africa, recently.
The seminar was organised by the International Institute for Journalism and attracted newspaper editors from various African countries.
But the turning point for the judge came with a shocking case of mob justice in 1998. Thirty-six-year-old Gugu Dlamini, heading home in KwaMacinza, a town north of Durban city, was waylaid by a mob and beaten senseless. Her crime? Three weeks earlier, she had gone public about her HIV-status. She eventually succumbed to her injuries. Four juveniles arrested and charged with the crime were later acquitted. Gugu Dlamini was survived by a daughter.
Three months after Gugu's death, Cameron, who had been taking a cocktail of drugs to manage the same disease from the privacy of his Johannesburg home, decided he could keep quiet no more.
"Gugu died in hospital — her body broken not by the HIV she faced with such conspicuous courage, but by the injuries her neighbours inflicted on her. I thought if this woman, without any protection, without the income of a judge, and who led a simple life in a township could declare she had Aids, why not I who enjoyed constitutional protection and lived in my middle-class suburb in Johannesburg?" recalls Justice Cameron, who was only 33 years old when his doctor told him he was infected.
"I was dealing with Aids within my body. I felt I needed to unite the public by breaking that paradox. At first, I thought the shame about my HIV diagnosis was because I'd got it as a gay, but I was wrong. I went into denial for many years until I fell sick and could no longer hide the fact from my friends, family, relatives and colleagues."
As one of the earliest reported/publicly declared cases of infection on the continent, the news was devastating for Cameron. "I felt too fearful to speak with anyone. I was ashamed of myself. I felt dirty, soiled, tainted, polluted and embarrassed. My blood and body were fouled with the most conspicuously vile infection known in recent human history. For the first time I knew what is meant to totally lose hope, to face death," he says.
After the shock of the diagnosis came the anger that his doctor had , without his consent, gone ahead to screen his blood for the HIV-virus. What also pained him was the crude manner in which the doctor broke the news to him - a casual telephone call one evening in December 1986. Now a judge at the supreme court of appeal, Justice Cameron has sat on a number of forums pushing to have laws enacted that would recognise the rights of people living with Aids. During forums for judges, he repeatedly and emphatically discusses Aids and the fact that he is living with HIV.
"I believe that every workplace in Africa needs people who are living with HIV to speak out clearly and forcefully to normalise this epidemic and to advance treatment and recovery and non-discrimination," he says.
The judge was part of a team that drafted proposals for a law put in to stop discrimination against HIV positive people by employers in the early 1990s. At that time, employers demanded HIV tests as a requirement to getting a job. He has campaigned for people suffering from Aids to receive medical allowances like as those suffering from other diseases such as diabetes, high blood pressure and cancer.
"I had so many other dependants who shared my salary and that's why I wanted Aids to be included in the medical scheme for judges," says Justice Cameron.
When he started taking Anti-RetroVirals in 1997, he was spending the equivalent of Sh36,000 a month. Today he spends Sh4,200 worth of drugs every month.
He says the denial by the South African government's denial of the existence of the disease is partly responsible for the delay in the distribution of the life-prolonging medicines to Aids victims.
Loren Anthony - Sunday Times Lifestyle - 1 May 2005
Force of the True
In his published memoir, Judge Edwin Cameron’s clear authoritative voice cuts a path between the silence and panic of the Aids pandemic, writes Loren Anthony
"‘I emphasised that I had been able to choose to make my statement because ‘I am not dying of Aids. I am living with Aids.’ The phrase caught on’"
THERE are ways of talking about this disease, Aids. Pieter-Dirk Uys, for instance, uses a humour that abrades, and there’s a truth in that. Local poets do it differently, wrenching out words about deadly love. Politicians in South Africa barely mention the Aids pandemic. Their silence speaks volumes, meaning nothing or anything at all. But Edwin Cameron, Justice of the Supreme Court of Appeal, has found his voice, and it is clear and principled, certain and reliable.
‘I very carefully calculated my own voice,’ says Cameron. ‘In this epidemic of so many millions, there are so few voices. In affluent North America and Western Europe, you have these loud, expressive voices. In Africa it’s different. Poverty, stigma and the inhibition of discrimination, have muted the response. But I deliberately set out to speak at a very personal level, to find the hearts of a wide range of people.’
There’s a relief in this. Cameron’s voice quickly negotiates the unturned terrain between the silence and the panic. It’s a compassionate voice that brings some balance to the shrill advocacy and insensate denial still raging around Aids.
And it’s a voice that is authenticated by one simple fact: Cameron has the virus in his body. It’s this one somatic fact that immediately links Cameron, the judge, to Gladwell, the gardener; that connects him to countless others ‘ unspeakably poor and socially marginalised ‘ who are living with HIV/Aids in South Africa , and dying unnecessarily from it.
You might, at this point, question that connection as tenuous and presumptuous. You might ask how a well-groomed, highly educated, gay, affluent white man can arrogate to himself the right of speaking for the destitute and the dying. But there’s a curious twist to Cameron’s story: he comes from a background of poverty and destitution. He grew up in a children’s home in the Eastern Cape .
Cameron was poor, yes, but he was also white. His white skin, so brutishly reified by the apartheid government, delivered him into the rarefied world of a top boys? school in Pretoria. This fact has never left him. ?It is the central part of my social and political consciousness. I certainly had talents, but I was able to express and build on those talents because I was white. A poor white kid could capitalise on his gifts in the 1960s and 1970s because of the privileges extended to whites.?
The word ?privilege? has lodged itself in Cameron?s psyche. It is a double-edged, sharp-bladed thing, cutting through the axis of having and not having, scoring both the included and the excluded.
In 1979, back from a Rhodes scholarship to Oxford, Cameron delivered a valedictory address to his former school. (At 26, he was the youngest ever speaker at a Pretoria Boys High School valedictory service.) Privilege, he said, meant ?learning something about compassion and tolerance and humility.?
Cameron spoke about the difficulty of learning these things on an empty stomach, with inadequate facilities or under-qualified teachers, or without a school to study in at all. Cameron spoke from both sides of the line, from the margins and the centre, and it is in this liminal position that his sense of social justice is rooted.
In 1970, while in matric, Cameron wrote a letter to anti-apartheid activist Peter Hain, inviting him to pen a story on the sports boycott for the school magazine Cameron edited. ?We published the story on the front page,? he recalls, ?but I must also say, after matric, when I went to Stellenbosch University, I dropped a lot of that angry commitment to justice, and became much more compliant.?
His compliance was short-lived. After graduation, Cameron quickly eschewed a private legal practice, and in 1988 he helped argue an appeal against the death sentences imposed on the Sharpeville Six. Although the legal challenge failed, the international outcry, partly fuelled by Cameron?s out-of-court advocacy, saved the six.
Cameron was poor, yes, but he was also white. His white skin, so brutishly reified by the apartheid government, delivered him into the rarefied world of a top boys’ school in Pretoria . This fact has never left him. ‘It is the central part of my social and political consciousness. I certainly had talents, but I was able to express and build on those talents because I was white. A poor white kid could capitalise on his gifts in the 1960s and 1970s because of the privileges extended to whites.’
The word ‘privilege’ has lodged itself in Cameron’s psyche. It is a double-edged, sharp-bladed thing, cutting through the axis of having and not having, scoring both the included and the excluded.
In 1979, back from a Rhodes scholarship to Oxford , Cameron delivered a valedictory address to his former school. (At 26, he was the youngest ever speaker at a Pretoria Boys High School valedictory service.) Privilege, he said, meant ‘learning something about compassion and tolerance and humility.’
Cameron spoke about the difficulty of learning these things on an empty stomach, with inadequate facilities or under-qualified teachers, or without a school to study in at all. Cameron spoke from both sides of the line, from the margins and the centre, and it is in this liminal position that his sense of social justice is rooted.
In 1970, while in matric, Cameron wrote a letter to anti-apartheid activist Peter Hain, inviting him to pen a story on the sports boycott for the school magazine Cameron edited. ‘We published the story on the front page,’ he recalls, ‘but I must also say, after matric, when I went to Stellenbosch University , I dropped a lot of that angry commitment to justice, and became much more compliant.’
His compliance was short-lived. After graduation, Cameron quickly eschewed a private legal practice, and in 1988 he helped argue an appeal against the death sentences imposed on the Sharpeville Six. Although the legal challenge failed, the international outcry, partly fuelled by Cameron’s out-of-court advocacy, saved the six.
Cameron is inordinately modest about his role as a human-rights lawyer, as a judge, as a patron of children?s homes and Aids shelters, and as an activist. (Nelson Mandela forewords the book and calls Cameron a hero.) ?I don?t deserve any glory. There is no straight line, no long-standing, honourable tradition of activism. Anyone who tries to look back and see a morally unblotted life, a morally unambiguous life, is attempting the impossible.?
And yet it?s hard not to create such a smooth linear narrative for Cameron. From his early Oxford days, Cameron?s political awareness was acute. ?Living in England in the mid-1970s under a Labour government, I realised how governmental power worked and that the way in which it was wielded made a huge difference in ordinary lives. That?s where my commitment began.?
From there, Cameron?s CV reads like a spin-doctor?s dream. But subtending the dream, subtending the politically cogent, ethically engaged activities of his professional life were the more tortuous peripeteia of his private life. In 1985, after a single unguarded sexual encounter, Cameron contracted the virus. As Cameron?s expertise and advocacy on Aids policy grew, his own inner silence thickened.
By 1997 Cameron realised he was dying of Aids and needed treatment. His salary enabled him to purchase life-saving anti-retrovirals for a staggering R4000 a month, almost half his salary at the time. Cameron knew that while he popped his pills twice daily, thousands of others couldn?t afford them. Here was the double-edge of privilege again, this time cutting along the differential of death and life. Cameron knew then that access to treatment lay at the dark heart of the Aids debate.
In the South African landscape, there were two rigid barriers to treatment: official government denialism around Aids, and the patent (intellectual property) laws and over-pricing of the pharmaceutical industry. Faced with this intransigence, Cameron decided that, as an individual and as a judge, it was no longer morally tenable to keep quiet. ?Surely,? he writes, ?if I started speaking as someone living with Aids, I would do so with greater moral force, more unchecked energy, better clarity about what had to be done.?
Cameron is inordinately modest about his role as a human-rights lawyer, as a judge, as a patron of children’s homes and Aids shelters, and as an activist. (Nelson Mandela forewords the book and calls Cameron a hero.) ‘I don’t deserve any glory. There is no straight line, no long-standing, honourable tradition of activism. Anyone who tries to look back and see a morally unblotted life, a morally unambiguous life, is attempting the impossible.’
And yet it’s hard not to create such a smooth linear narrative for Cameron. From his early Oxford days, Cameron’s political awareness was acute. ‘Living in England in the mid-1970s under a Labour government, I realised how governmental power worked and that the way in which it was wielded made a huge difference in ordinary lives. That’s where my commitment began.’
From there, Cameron’s CV reads like a spin-doctor’s dream. But subtending the dream, subtending the politically cogent, ethically engaged activities of his professional life were the more tortuous peripeteia of his private life. In 1985, after a single unguarded sexual encounter, Cameron contracted the virus. As Cameron’s expertise and advocacy on Aids policy grew, his own inner silence thickened.
By 1997 Cameron realised he was dying of Aids and needed treatment. His salary enabled him to purchase life-saving anti-retrovirals for a staggering R4000 a month, almost half his salary at the time. Cameron knew that while he popped his pills twice daily, thousands of others couldn’t afford them. Here was the double-edge of privilege again, this time cutting along the differential of death and life. Cameron knew then that access to treatment lay at the dark heart of the Aids debate.
In the South African landscape, there were two rigid barriers to treatment: official government denialism around Aids, and the patent (intellectual property) laws and over-pricing of the pharmaceutical industry. Faced with this intransigence, Cameron decided that, as an individual and as a judge, it was no longer morally tenable to keep quiet. ‘Surely,’ he writes, ‘if I started speaking as someone living with Aids, I would do so with greater moral force, more unchecked energy, better clarity about what had to be done.’
In 1999, at his public statement to the Judicial Service Commission of the Constitutional Court, Cameron announced his HIV status. He was unprepared for the response: ?They seemed to embrace me, respectfully, supportively, even ardently. I emphasised that I had been able to choose to make my statement because ?I am not dying of Aids. I am living with Aids?. The phrase caught on.?
What did not catch on, sadly, tragically, was disclosure from other African leaders. To date, Cameron is the only person in public office in Africa who has disclosed his HIV status. The silence, Cameron knows, is due to the suasive seal of stigma.
To de-mythologise and normalise the illness, to unfreeze the static thrall of stigma, Cameron began to write. And he writes in two ways: firstly, he makes the story personal, very personal ? so personal that there are painfully candid pictures of himself and his loved ones at the centre of the book.
It is a small and precious album, but it is entrusted to the reader because Cameron wants to offer proof of a life lived and a disease survived. That is what witnesses do ? they offer up themselves as evidence.
Cameron makes it personal by not only telling his own story, but by respectfully telling the stories of others. He rightly intuits the importance of individual narratives. It is through personal testimony that the debate takes on its flesh, its soul. Hazel Tau, Christopher and Nontsikelelo Moraka, Gugu Dlamini and Gladwell, through lack of access to treatment, have died or almost died of this disease. By telling their stories, Cameron connects the voices, hooking the reader into the real, culling empathy and helping to challenge indifference. What Cameron does is evoke compassion where none had existed before.
Secondly, in writing, Cameron makes it simple. He takes incredibly complex issues like epidemio-logy, patent laws and Aids denialism, and makes them accessible. ?I didn?t want to write for the Aids cognoscenti, for academics and highbrow preoccupations,? says Cameron. ?Since the launch of the book, I?m amazed at how many responses have been about how readable and understandable the book is, how complex issues have been explicated.? With immense clarity and honesty, he has written the book that needed to be written, that did not yet exist in the sluggish canon of healing, helpful, empowering Aids literature.
In 1999, at his public statement to the Judicial Service Commission of the Constitutional Court , Cameron announced his HIV status. He was unprepared for the response: ‘They seemed to embrace me, respectfully, supportively, even ardently. I emphasised that I had been able to choose to make my statement because ‘I am not dying of Aids. I am living with Aids’. The phrase caught on.’
What did not catch on, sadly, tragically, was disclosure from other African leaders. To date, Cameron is the only person in public office in Africa who has disclosed his HIV status. The silence, Cameron knows, is due to the suasive seal of stigma.
To de-mythologise and normalise the illness, to unfreeze the static thrall of stigma, Cameron began to write. And he writes in two ways: firstly, he makes the story personal, very personal ‘ so personal that there are painfully candid pictures of himself and his loved ones at the centre of the book.
It is a small and precious album, but it is entrusted to the reader because Cameron wants to offer proof of a life lived and a disease survived. That is what witnesses do ‘ they offer up themselves as evidence.
Cameron makes it personal by not only telling his own story, but by respectfully telling the stories of others. He rightly intuits the importance of individual narratives. It is through personal testimony that the debate takes on its flesh, its soul. Hazel Tau, Christopher and Nontsikelelo Moraka, Gugu Dlamini and Gladwell, through lack of access to treatment, have died or almost died of this disease. By telling their stories, Cameron connects the voices, hooking the reader into the real, culling empathy and helping to challenge indifference. What Cameron does is evoke compassion where none had existed before.
Secondly, in writing, Cameron makes it simple. He takes incredibly complex issues like epidemio-logy, patent laws and Aids denialism, and makes them accessible. ‘I didn’t want to write for the Aids cognoscenti, for academics and highbrow preoccupations,’ says Cameron. ‘Since the launch of the book, I’m amazed at how many responses have been about how readable and understandable the book is, how complex issues have been explicated.’ With immense clarity and honesty, he has written the book that needed to be written, that did not yet exist in the sluggish canon of healing, helpful, empowering Aids literature.
In the face of denialism and silence and absence, Cameron?s openness and transparency, his modulated, truthful evocations are joyous. In another context, Umberto Eco has spoken of the Force of the False ? those clear moments in history when groups of people tend to believe in false knowledge.
Sometimes this may be serendipitous, leading to good fortune but, most often, this is dangerous and self-limiting. In many ways, the government?s obdurate denialism is an example of this. In contrast, I like to think Cameron represents the Force of the True ? and this force is shiny and tolerant, bright and compassionate, and hopeful.
?Edwin Cameron: Witness to AIDS is published by Tafelberg, R125
Laurice Taitz
Editor
Sunday Times Lifestyle
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In the face of denialism and silence and absence, Cameron’s openness and transparency, his modulated, truthful evocations are joyous. In another context, Umberto Eco has spoken of the Force of the False ‘ those clear moments in history when groups of people tend to believe in false knowledge.
DIE media reduseer MIV/vigs dikwels tot blote statistieke - 'n gesiglose massa, onbekend aan baie van ons voel ons - en iets waardeur ons nie geraak word nie. Dit is menslik om empatie te hê met dit waarmee jy jouself kan vereenselwig. Wat appèlregter Edwin Cameron met Witness to Aids meesterlik regkry, is om dié van ons wat tot nou toe bloot toeskouers rakende vigs was, betrokke te kry. Hy kry dit reg om die leser te oorreed dat vigs alle Suid-Afrikaners na aan die hart móét lê. Cameron vertel sy lewensverhaal - van sy moeilike kinderdae en die jare wat hy in kinderhuise deurgebring tot wanneer hy 'n menseregte-prokureur word - en hoe hy MIV-positief getoets word. Op die oog af klink dit na 'n morbiede verhaal, maar die teendeel is waar. Dit is 'n eg Suid-Afrikaanse verhaal van hoop en menslikheid. Cameron vertel hoe hy op 'n dag in 1997 nie langer die 40 trappe in die hooggeregshofgebou sonder bomenslike inspanning kon klim nie, en hoe hy besef het dat hy nie langer net MIV-positief was nie, maar dat hy vigs het. Hy vertel van sy besluit om antiretrovirale middels te begin gebruik en hoe dié besluit sy lewe onherroeplik ten goede verander het. Soveel so dat hy sê "I am not dying of Aids, I am living with Aids" (p 63). Cameron verduidelik verder hoekom hy besluit het om sy vigsstatus bekend te maak, en hoe een van die moeilikste dinge wat hy moes doen, was om sy 78-jarige ma daarvan te vertel. Iets waaroor hy baie sterk voel, is sy verantwoordelikheid om te praat oor die siekte. Hy sê "To survive Aids is to feel the joy of escape, and the elation of continued life. It is also to bear the duty to speak, and the responsibility to bear witness" (p. 122). Witness to Aids is egter nie net 'n persoonlike verhaal nie. Dit is ook 'n kritiese oorsig oor die geskie denis van die siekte in Afrika. Die vraag oor hoekom vigs in Afrika meer gekonsentreerd, meer intens en meer wydverspreid as elders in die wêreld is, oftewel die kwessie van "race, sex and death in Africa", word ook indiepte bespreek. Iets wat hom duidelik na aan die hart lê, is die Suid-Afrikaanse regering se houding jeens die pandemie, met spesifieke verwysing na wat Cameron noem "Aids denialists". Hier word oudpresident Nelson Mandela en president Thabo Mbeki se uiteenlopende reaksie tot die vigskrisis onder die soeklig geplaas. Nog 'n onderwerp waaraan Cameron baie aandag skenk, is die rol van farmaseutiese maatskappye, met spesifieke verwysing na die groot wins wat gemaak word. Hy sê "The (facts) indicate that despite the alleged burden of research and development costs, pharmaceutical companies are quite phenomenally profitable. It is pofits of this order that makes the debate about illness and death in Africa so heart-rendering." (p 171) Waarin Witness to Aids veral slaag, is om 'n mens anders na vigs te laat kyk, waarskynlik omdat dit geskryf is deur iemand wat maklik jou buurman of swaer of kollega kon wees. Iemand wat dieselfde ideale, drome en vrese as jy deel. Edwin Cameron gee aan vigs 'n herkenbare gesig - 'n gesig waarmee jy jou maklik kan vereenselwig. En omdat hy so herkenbaar is, is sy oproep om aksie in die slotparagraaf soveel meer treffend. "Aids beckons us to the fullness and power of our own humanity. It is not an invitation that we should avoid or refuse" (p 215).
Michele Magwood - Sunday Times - 24 April 2005
"But the book that is creating the most buzz at the moment is Judge Edwin Cameron's/ Witness to Aids/ ...Anyone who has been lucky enough to hear Cameron speak wil be familiar with his elegant, lucid style, and this book, which is part-memoir and partly a study ot the many facets of the pandemic, is a moving, important work."
Professor Malegapuru William Makgoba – Johannesburg launch Thursday - 7 April 2005
Notes for the launch of Witness to AIDS
Johannesburg Thursday 7 April 2005
I started my journey at 6.30am, 240 kms from Durban at Mtubatuba, taking a day off from a busy international scientific review team of the Wellcome Trust to be here.
I am however not here to review Edwin’s book. I am here to give meaning and interpretation to the book and offer a picture of its significance to us in our struggle against HIV/AIDS. I am here and had to be here because it’s special!!
Distinguished guests and colleagues, may I take this opportunity to thank Edwin and the Publishers, Tafelberg for this opportunity to share a few words on this wonderful occasion---the launch of Edwin Cameron’s book -“Witness to AIDS”. It is both an honour and a privilege to speak on this occasion.
Firstly, like the title of the book, we are here to witness this launch and are therefore witnesses ourselves. But more importantly, we are here as friends, colleagues, admirers and people who care and love Edwin for the ways in which Edwin has touched, inspired, influenced, contributed and made the quality of our lives better.
Edwin has done all of this by being friend, colleague, teacher, academic, brother, advisor, legal expert and of-course judge. His person and personality have been special to most of us—he has multiple identities almost like kaleidoscope.
Edwin’s major contribution and ‘legacy’ to us has been through the clarity of his observations, the clarity of his articulation of these observations and more profoundly the clarity of the conclusions drawn from these. It is his ability and humility to open to us his personal struggles and the struggles of those he cares about that is so special.
He has brought this strength to bear in his story and successfully brought us together as a nation (reconciliation) in “Witness to AIDS”.
Many of us share a few things with Edwin---a history and experience of poverty and disadvantage, coming from a broken family and having to spend a part of his early life in children’s home in Queenstown away from the love and care of his parents.
We also share with him the passion for honesty, integrity and the belief in meritocracy. He epitomises all these.
We also share with him the pain of the national struggle against apartheid and HIV/AIDS.
Some of us share with him the background of having had the benefit of English education at that most of ancient Universities—Oxford. It is all these experiences in time, space and culture that have influenced and shaped Edwin just as it has shaped all of us.
Edwin has a special feature that we may not all have or share with him “he has not only a brilliant mind but also a beautiful mind too”. There is a huge difference to being brilliant as to being brilliant and having a beautiful mind.
Just like his dad, Edwin is also “handsome”, a feature not so common to many of us.
It is approximately 20 yrs now that Edwin has lived with HIV. Reading the book and reflecting on developments, it would be fair to conclude that Edwin himself at one stage must have many times thought he would never see a day like this—the launch of his book reflecting on a disease that continued to threaten his very existence. This day is therefore special because it is also a day of triumph; a day that reflects positively on human development and advances in medical sciences but more importantly on Edwin’s triumph.
As an 11 yr old in 1963, I had to witness my father’s life seeping and slipping away from us as family as a result of type 1 Diabetic keto-acidosis. At the time in South Africa and many parts of the world, insulin was not freely available and was just becoming available and no one was sure what it would do to an African teacher in rural South Africa. My father by chance and persuasion became one of the early subjects to try insulin in South Africa. He took his injections religiously at 7 am and changed his whole life-style. My father is today 83 and has never been to hospital and values each year as it passes often jokingly remembering that he could have been somewhere else 42 yrs ago. When one reads through Edwin’s book I could not escape this similarity separated by almost 20 yrs. In both situations a message of “meticulous adherence to details in terms of observations and how these observations are followed up and resolved is very crucial”. In both a total change in life styles underpins success. In both Edwin’s and my father’s case medical science has indeed made a difference to their lives and the lives of many others. However, in both their decisions
and taking responsibilities for their destinies has been important.
In medicine and I guess in many other fields there is a saying that “a comprehensive and meticulous study of one person about their experiences” usually provides the best lessons and ways to illuminate some of the dark shadows associated with a particular issue or problem.
Edwin used his own predicament, his own struggle, his own trials and tribulations and his own search for answers and search for the truth to fight the course of justice, equity, dignity and mount a struggle for many other disadvantaged HIV infected and affected persons. He turned adversity into success, turned despair into hope and is a symbol for that which is good about humanity. He used his privileged position as Edwin to advance the course of others. His story counts as a true example of how humanity advances from single, personal, profound and powerful experiences cf NR Mandela’s 27yrs imprisonment.
He particularly advanced the course of ART access in our country; he championed the arena to remove stigma, deal with the associated shame and the denialism that continue to plague our whole approach to HIV/AIDS. He fought the racialisation of the HIV/AIDS epidemic in his writings, speeches and activities. He brought dignity and human face to what appeared an irretrievable downward-spiralling situation. He did this with respect, compassion, clarity of articulation, building smart alliances eg with TAC and many important personalities here and abroad. He did all of this partly to understand his own situation but predominantly to advance dignity for all and ensuring that his compatriots enjoy and benefit from the new democracy and the way that he did from a position of privilege.
Denialism, Race, Stigma and the “associated shame” have been and are still some of the major obstacles in tackling HIV/AIDS in our country. As a nation, we have at times even denied whether HIV exists and consequently whether AIDS does exist at all. We have also denied that Africans like most species in biology practice homosexuality. Something so fundamentally biological became racialised. We have used such flimsy and unsubstantiated racialised reasoning to develop a false sense of belief that therefore HIV/AIDS is not there. We falsely thought that by believing it is not there, it will not be there or it will go away!!! How naïve!! Growing up in rural South Africa we knew and were often warned of and about some men. I have often said that in 1990 both South Africa and Thailand had an HIV prevalence of 0.7%.
Fifteen years later the prevalence in Thailand is 2% and ours is approximately 25%. We should ask “What choices did we make as a nation” as opposed to Thailand. Amongst others we chose to deny; we chose to vacillate and racialise reasons; we chose secrecy instead of openness about HIV/AIDS. We still continue to struggle with this “breaking of Silence”. Edwin has again leads the way for us all.
Witness to AIDS is a powerful and refreshing personal story which is written with clarity, eloquence, simplicity and understated humility and insight into one of humanity’s greatest challenge—HIV/AIDS. It appears to have been written by a pontiff with legal education or perhaps the other way round.
Its words illuminate the many dark shadows of this epidemic from an honest and detailed personal knowledge, analysis and reflection over 20 yrs of intimate experience with HIV/AIDS. It is unique and an intellectual treasure about this epidemic and this person—Edwin Cameron. It is a powerful story.
Of the many facets it addresses and confronts are the race, denial and the stigma that continue to plague rational thinking and delay progress.
This is for me a classic African Renaissance story of our time written as former State President Mandela said “One of South Africa’s new heroes”.
It is a major and landmark contribution that would assist individuals, public policymakers, educators and the nation to move forward in concert and with the sensitivity and compassion in confronting, understanding and addressing HIV/AIDS. The story is uplifting, insightful and gives us all hope for the future. It is the story of Edwin Cameron as an individual, Edwin as a human being, Edwin as a South African and Edwin as our friend. It is a human story of immense contributions.
“The plague or Black Death that preceded the European Renaissance reached Europe in 1347 and England by 1348, where it is said to have killed half its population. It was an episode of exceptional catastrophe. People said and believed, “This was the end of the world”. Does this not ring a familiar note with the current HIV/AIDS epidemic in our country? Today, the plague only exists in the sub-consciousness of the descendants of the Europeans; while HIV/AIDS boggles the consciousness of almost every African parent and child (Magubane in African Renaissance). Witness to AIDS by Edwin provides an answer to this common story, common fear and common dilemma.
“If truth is beauty, this relentlessly brilliant and hopeful book is beautiful” Nadine Godimer.
Edwin’s story is truly “A Witness to AIDS”.
Malegapuru William Makgoba
Vice-Chancellor and Principal
University of KwaZulu-Natal
Sharon Dell - Natal Witness - 10 May 2005
Reluctant hero
In October 1997, physically overcome by the four flights of stairs from the judges' common room to his chamber four floors above, Judge Edwin Cameron was forced to accept what he knew was inevitable - 12 years after being diagnosed HIV-positive, the virus had got the better of his immune system and he was desperately ill. He had Aids.
So begin the memoirs of a man described by Nelson Mandela on the cover of Cameron's recent book, Edwin Cameron: Witness to Aids, as "one of South Africa's new heroes".
The appellation does not sit easily with the author and judge of the Supreme Court of Appeal. "No, I'm not a hero," he tells me over the telephone from his home in Johannesburg. He has locked himself out of his house and our conversation is interrupted a number of times by his attempts to elicit help to retrieve the spare keys and his gracious apologies to me.
"How can I be a hero simply for having a certain health status?" he asks. "I was just a voice at the right time and I don't think that to speak the truth at the right time qualifies me as a hero. It was the absence of other voices at the time that make my conduct seem exceptional."
But if Cameron doesn't deserve this title, who does? My South African Pocket Oxford says a hero is "a person who is admired for his or her courage or outstanding achievements". For me, Cameron has displayed ample evidence of both.
And much of this evidence is set out in his superb book - a relentlessly honest, solidly-argued, meticulously referenced, perceptively illustrated, at times philosophical and frequently gripping narrative. The book interweaves Cameron's legal work with his personal experience of HIV and the wider story of a national epidemic and the government's response to it. Issues such as stigma, the perilous intersection of race, sex and death in Africa, President Thabo Mbeki's confounding flirtation with Aids denialism, the "hideous wavering" at critical times by the South African leadership on the issue of drug treatment, the Constitutional Court's role in securing treatment for HIV-positive pregnant women and the weighty matter of when a judge can speak out on contentious political issues - all of these complex and, at times, painful issues are pursued with sensitivity, reason and balance.
At the personal level, the book is a moving account of Cameron's life-saving introduction to antiretrovirals, which almost immediately gave him "a daily access of miraculous new energy", an energy which allowed him, after only four weeks of treatment, to climb not only his office stairs, but Table Mountain.
The book contains an inspiring account of Cameron's decision, supported by, among others, Chief Justice Arthur Chaskalson, to end the burden of secrecy by disclosing his HIV-status before the judges' commission convened to consider applications for the position of Constitutional Court judge.
Finally, the book is about the "burning" belief of a once-destitute child - who spent part of his life in an Eastern Cape children's home - that "actions can change social patterns and the lives they determine" and that "government and human institutions are duty-bound to address disadvantage and injustice where they occur". All said, Witness to Aids is powerful and inspiring stuff.
Cameron's commitment to truth, justice and action is reflected in his view that initiatives such as the Ladybrand Hospice, which cares for Aids orphans, show that "inaction and hopelessness are the least forgiveable choices".
I suggest to the judge that the book's strong emphasis on personal and political agency, positive choice-making and truth-telling embodies many of the qualities one would associate with heroism and I doggedly pursue this line until Cameron cuts me short. "That's really for you to decide " he says.
Persuaded by a publisher to put his story to paper, Cameron says that most of the book's content has already been expressed on some form of public platform. "But a book is different because it makes more of a public impact. It is a public record, a sustained personal telling. It was a story asking for a voice," he explains.
"As far as I know, I'm the only person in South Africa holding public office to have made an admission regarding my HIV-status," Cameron tells me, repeating the claim that appears on the back cover. When later I dig out and e-mail to him an article about the disclosure late last year by Pietermaritzburg's member of the provincial legislature, Anthony Grinker, Cameron replies immediately to thank me and declares it "good news".
When he made his public disclosure in April 1999, Cameron says he was confident that there would be people in public office who would follow. "But we were on the brink of a three-year denialist nightmare, which had the effect of chilling debate. It cast a deep freeze over the debate and I think this inhibited people from stepping forward," he says.
Cameron started his meticulously-
constructed book in mid-September 2003, finishing it just over one year later with two of the later chapters co-written by Nathan Geffen of the Treatment Action Campaign. "It was about the worst and hardest thing I've ever done," he says. "Writing is agony. I experienced daily paralysis." Coming from an erudite and experienced writer of legal judgments and co-author of books such as Defiant Desire - Gay and Lesbian Lives in South Africa, this confession seems disingenuous. But Cameron's new book involves a different kind of writing.
"I chose to use a personal voice; it was always going to be a personal book," he explains. "This carries risks and made it enormously difficult. Furthermore, the story is bound up with personal issues such as sexual transmission [of disease] and I had to traverse this territory with sensitivity and attention to detail."
Much of the book's power lies in its personal honesty. For example, despite its questionable relevance, Cameron does not shy away from explaining how he contracted HIV -despite leading "the generally cautious life of a hard-working lawyer", he contracted the virus during a single, incautious encounter in Easter 1985.
The final chapter also deals with the personal process of his coming to terms with his time in the children's home in Queenstown where he and his sisters were sent after his mother, unsupported by Cameron's alcoholic father, found that she simply couldn't cope.
The closing pages touch on the emotional process by which Cameron came to express, 30 years later, his suppressed grief over the accidental death of his sister, Laura, when Cameron was only seven.
There has been an extraordinarily positive response to this book. Cameron tells me that 4 000 copies were printed in the first print run, which sold in two weeks, and an emergency re-print was ordered the week before our conversation.
His greatest hope for the book is that it "helps to personalise and humanise the epidemic; that it helps to achieve a greater understanding of what people with HIV live through and that it helps to secure a greater normality for HIV as a medical condition".
Cameron attributes the success of his book to its timing and its readability. "The book has come at the right time. While it's aimed at the serious reading market, there's a respectful attempt to make it accessible."
Respectful is a word that frequently comes to mind in my conversation with this thoughtful man and it also characterises the approach he takes in his book. It is for this reason that Justice Minister Penuel Maduna's criticism of Cameron (albeit on a mistaken premise) for being among "some judges" who issue "controversial political statements from behind the skirts of their judicial robes" is taken up in the book in some detail. Defending his carefully-argued paper, which was published in the Mail Guardian in April 2003 under the headline "The dead hand of denialism", in which he compares the systematic denial of Aids as a virologically-caused disease with systematic denial of the Nazi Holocaust, Cameron agrees that without compelling justification, "the less judges say the better".
However, this principle is not inviolate. He goes on: "Judges may be compelled by their personal position, by high dictates of conscience or by the moral demands of a particular situation, to speak out clearly and forcefully on matters of current controversy. This exception applied, I believe, when I spoke out on dogmatic Aids denialism ."
A little later, he argues that the mere fact of his survival, in a country where so many were being deprived, because of their poverty, of the life-saving benefits of treatment, provided the "rare justification" for him to speak out.
While Cameron's criticism of the government's approach to the HIV/Aids issue is consistently direct, it is at all times judicious. "I deliberately set out not to be abrasive or confrontational," he tells me. "I am aware that dealing with this epidemic requires conciliation, unity and cohesiveness, not confrontation."
Therefore, while he will acknowledge that "one of the tragedies of the epidemic is the three-year nightmare period of denialism", he is encouraged by the present national treatment programme - the provision of ARVs to people at state hospitals started in April 2004 and Mbeki's announcement of a treatment target in his state of the nation address at the opening of Parliament last year. As a patron of Sparrow's Nest Hospice in Johannesburg, Cameron says he is now witness to the positive effect of the ARV rollout.
"I am optimistic - for myself and for others with HIV, and for our country. Treatment is becoming easier and research is producing more effective drugs. Perhaps the health minister is making ambivalent statements, but we must separate these statements from the genuine complexities and infrastructural challenges that exist in the rollout of ARVs."
Such reasonableness seems to go to the heart of the man described by Professor Malegapuru Makgoba at the book's launch in Johannesburg last month as having not only a brilliant mind, but a "beautiful mind" as well.
Tim Trengove Jones - Business Day - 11 May 2005
BY WORD count, Edwin Cameron’s aptly titled Witness to AIDS is a relatively small book. But in every significant respect, it is a big book indeed. It has been justly praised by two Nobel laureates, Nadine Gordimer and Nelson Mandela. Reviewers have lauded the judge’s intelligence, courage, and humanity.
Editors and scholars say SA has "AIDS fatigue", and that HIV/AIDS stories don’t sell. The burgeoning infection rates have presented us with figures that are truly unspeakable. Added to this, stigma has promoted evasion and repression, silence and shame. But here is a book that tackles these daunting details head-on, yet with great popular success.
The project of the new SA is one of re-examining identities and, where necessary, forging new ones. Nation-building is fuelled by a process of diligently re-examining selfhoods. Cameron’s text is a representative anecdote of just this.
He repeatedly stresses his own privilege. But the issue is more complex. As a gifted intellect, a white male in former apartheid SA, now a high judicial officer, he is indeed privileged. But his identity is not unambiguous. As a gay male with AIDS, he is potentially a target of opprobrium.
You cannot simply say that Cameron is "an AIDS activist" or a "gay white male living with AIDS", or an "internationally renowned jurist". He is all of these, and more. His narrative shows the varied colours of our self-hoods.
The text, too, is varied. Like a great deal of contemporary writing, it is a hybrid: part memoir, part apologia, pro vita sui, part jurisprudence, part polemic. This variety mirrors the complexity of the issues it addresses, indicating that no one form can claim to adequately represent the many-faceted reality the text addresses. It is democratic in bias and shows that the rainbow nation requires a "rainbow" book.
But while the book shows a diligent commitment to the "examined life", it is not locked in solipsism. It continually looks outward to larger issues and cultural patterns. This moving out to other lives is deeply ethical and political, a demonstration of the values our new social order requires.
Cameron’s text goes a long way to redeem that unpopular species: the public intellectual. Desperately needed, the species has been ignored or reviled. But this text shows that principled intelligence is needed, and need be neither malign nor impotent.
While I’m sure the judge would be properly sceptical of the cult of personality, this book suggests how much the fate of a nation might hang on the interventions of principled, thoughtful individuals.
Cameron has coined phrases that have the trenchancy of aphorism, and the political clout of slogans: "I am not dying of AIDS, I am living with AIDS", "a crisis of truth-telling". These coinages have neatly encapsulated whole debates, and focused attention.
The book is a classic rags-to-riches tale. But in its stress on principled citizenship, it counters the tendency to link liberation with mere upward mobility. What Cameron calls "second chances" should also be seen as a myth of recovery. Deeply embedded in our psyches, crucial to our understanding of SA’s miracle, this pattern talks to our contemporary aspirations in profound ways. The book shows a myth made real.
This slim book shows one man taking the lead in facing many of the spectres of the national mind, and trouncing them. It is an exemplary tale of our new nation, and Cameron, for all his distinctiveness, has a mind perfectly in keeping with the time and place in which he lives.
Trengove Jones is a senior lecturer at the School of Languages and Literature, Wits University, and has written widely on the politics of HIV/AIDS.
Tina van Rensburg - Die Beeld - 29 August 2005
Hoogdrawende getuie van vigs
Tina van Rensburg
Witness to aids deur Edwin Cameron . Tafelberg (sagteband, 238 pp.), R125. ISBN 0 624 04199 9
Die verskyning van dié nie-fiksieboek het heelwat publisiteit ontvang. Dit is te verstane. Edwin Cameron is 'n gesiene regter van die Hoë Hof wat in 1997 voor 'n regskommissie erken het dat hy 'n vigslyer is, die eerste mens in 'n amptelike pos om so iets te doen.
Cameron, wat homself as 'n vigsaktivis beskryf, het besluit om 'n boek te skryf oor waarom hy hom as 't ware as getuie geroepe voel om sy voortbestaan met vigs te verduidelik in 'n land waar groot getalle mense weens die gevolge van die virus doodgaan.
Dit doen hy in 'n boek wat hierdie resensent met die beste wil ter wêreld nie as 'n "relentlessly beautiful and hopeful book" (Nadine Gordimer op die agterblad aangehaal) kan beskryf nie.
'n Maklike lees was dit nie. Dis 'n meedoënloos presiese beskrywing van alles en almal binne en buite Cameron en vigs se dampkring, al sy toesprake woordeliks herhaal in die nimmereindigende geworstel met vraagstukke van "ras, seksuele oriëntasie, armoede en die stigma van MIV/vigs uit sy persoonlike perspektief" soos Zackie Achmat van die TAC dit (gelukkig) op die agterblad opsom.
Cameron se woorde is talryk en afgemete. Van onder meer die diagnose nadat hy soveel jare vermoed het dat hy met die siekte leef; sy geluk en voordeel om as vermoënde regter die anti-retrovirale middels te kan bekostig, tot sy beter gesondheid nadat hy die middels begin gebruik het . . . en dit alles in dié verskriklik armoedige land met die vreeslike verlede. Die politieke wandade van die verlede is binne die raamwerk van die land se geskiedenis relevant -- maar Cameron bied dit met venyn aan, dermate dat hierdie Afrikaanssprekende Suid-Afrikaner al hoe traer gelees het.
Hy erken dat die huidige regering tot sy groot teleurstelling nog nie die vigs-kwessie reg aanpak nie . . .
Uiteindelik wonder 'n mens wie werklik by die lees van hierdie boek kan baat vind.
Tot dusver kan jy sonder vrees vir die gereg wel sê Witness to aids sal vir lesers (met 'n belangstelling in die wet en met baie woordeboeke), navorsers, biblioteke en argiewe waardevol wees.
Die boek beskik oor 'n stewige bibliografie met aantekeninge en indeks.
Op die voorblad word Nelson Mandela aangehaal: "One of South Africa's new heroes".
Ja, wel. Seker. Maar Zackie Achmat met sy spontaneï teit en menslikheid het veel meer gedoen om die werklikheid van vigs by almal tuis te bring as wat dié hoogdrawende bombardement kan.
• Tina van Rensburg is 'n senior redaksielid van Beeld.
Werani Chirambo - Bonela Guardian, vol 2, issue 2 - June 2005
Witness to AIDS is an intrisic blend of memoirs and spellbinding analysis describing how a South African judge faces life with AIDS, how a country grapples with the disease and how Africa is trying to deal with the HIV virus and AIDS. It reads like a typical tale of a survival with a tinge of survivor's guilt well highlighted in the epigraph. The author, Edwin Cameron, is a judge in South Africa's highest court and a South African living with HIV/AIDS, a disease that is one of the major challenges the African continent is facing. He is trying to explain why he has been given a second chance, why he has survived an epidemic which is claiming so many lives not only in south Africa but the whole continent.
Cameron was born in Pretoria on the 15 February 1953. After completing his high school education he was awarded the Anglo-American Open Schoolarship to attend Stellenbosh University where he did his BA in Law and Latin. He later went to Oxford University where he obtained another BA in Jurisprudence. He later obtained his LLB from the University of South Africa and was awarded the medalion for best law student. Cameron started practicing law in 1983. He has been involved in HIV/AIDS policy formulation since the 1980s. He has co-authored books and has delivered several key note addresses including one at the XIII International Conference on HIV/AIDS in Durban, South Africa. Perhaps his biggest achievement so far is that he is the only public office bearer in South Africa to have chosen to go public with his HIV status.
The reason Cameron decided to write this book is well emphasised by Primo Privi in the epigraph; he is a survivor for whom remembering is a duty. He does not want to forget, and above all, he does not want the world to forget that stigma, access to care, race, sexual orientation and HIV/AIDS are still enormous challenges that need to be acknowledged and dealt with.
Witness to AIDS gives a face to HIV and AIDS and its implications not only in South Africa but the whole continent. For those living with AIDS especially those receiving ARV treatment, they might share with Cameron the survivor's guilt and ask themselves why they have survived. They will also share with him and others living with HIV/AIDS the inner terror, innner sense of contamination, external fear of stigma and the fact that they are all living with HIV/AIDS.
Cameron admits that he was able to publicly declare his HIV status because he is a Judge and has support from friends and relatives. Other people without support and his socio-economic position find it more difficult to publicly declare their status and often have no access to the life-giving drugs. Botswana is one of the countries in the world with a high HIV infection rate, political commitment to fighting HIV/AIDs and ARVs are provided in the public health sector. However no politician, judge, university lecturer or doctor has gone public with their HIV status. This book makes you wonder what it would take for Botswana to have her own witness to AIDS.
This is a must read. Nadine Gordimer actually said, "If truth is beauty then this relentlessly brilliant and hopeful book is beautiful. It is a text to live by..." Reading it is an experience that touches your soul, and after reading it your approach to HIV/AIDS will never be the same. It can be found at any Exclusive Books shop.
Willemien Brummer - Die Burger - 8 April 2005
DIE lang man met die geel das wag rééds by die tuinhek van die huis waar hy in Kampsbaai tuis gaan. Ek pyl vervaard op hom af en hy steek sy hand beleefd uit, my laatkommery en die geniepsige oggendlug ten spyt.
Dis skuins ná sewe. Netnou moet hy ‘n vliegtuig haal terug Johannesburg toe. Ons soek na ‘n restaurant in Kampsbaai se winkelstraat, en ons word keer op keer weggewys: Die koffie is nog nie gebrou nie; die tafels nog nie uitgedra nie.
Tog bly appèlregter Edwin Cameron beleefd, amper té nederig: As hy ‘n tweede kans gegun is, hoekom moet ander dit dan nie ook kry nie?
Sowat agt jaar gelede, in Oktober 1997, het hy vir die eerste keer besef hy het volwaardige vigs toe hy nie die 40 trappe kon klim van die regters se teekamer in die Johannesburgse hooggeregshof tot by sy eie kamers nie. Hy was tot die dood toe moeg en sy liggaam was oortrek met sproei. Hy kon nie meer kos verteer nie en hy het ál maerder geword.
Met sy besoek aan die dokter kort daarna was dit nie eens nodig om vir hom te sê hy het PCP nie—die gevreesde Pneumocystis carinii-pneumonie, ‘n seldsame soort longontsteking wat voor die tyd van vigs feitlik onbekend was. In die 1980’s, onder gay mans in Noord-Amerika, was dit die belangrikste oorsaak van vigssterftes.
Ná twee kursusse van die antibiotikum Bactrim en behandeling met die anti-swammiddel Diflucan het sy hart gesink. Die behandeling het nie die PCP oorwin nie. Sy liggaam, het hy gevrees, begin sy luike toemaak.
Tog was daar hoop: Wat hom van die meeste ander vigslyers in Afrika onderskei het, was dat hy vir antiretrovirale middels kon betaal. Al het die trippelterapie wat aan hom voorgeskryf is, in dié tyd meer as R4 000 gekos.
Op 13 November 1997 het hy sy eerste pille gedrink en skaars ‘n maand later—op Versoeningsdag—het hy Tafelberg uitgeklim. Hy het geweet hy is ‘n tweede kans gegun.
NOU, ten spyte van die bekendstelling van sy boek Witness to AIDS die vorige aand, lyk hy blakend gesond. Jonger as die meeste 52-jariges -- en fikser. Die viruslading in sy bloed is onnaspeurbaar en die aantal witbloedselle wat die virus moet beveg, bly reeds die afgelope vyf jaar konstant tussen 350 en 550.
As ek nie geweet het nie, sou ek nooit kon raai hy leef reeds 20 jaar met die MI-virus nie. Maar in 1999 het hy seker gemaak ek én die res van Suid-Afrika wéét. Hy het dit aan die Regterlike Dienskommissie gesê in sy aansoek om ‘n pos in die konstitusionele hof. Ses jaar later is hy steeds die enigste openbare ampsbekleër in Suid-Afrika wat erken hy is MIV-positief.
Geen wonder emeritus-aartsbiskop Desmond Tutu het hom by sy boekbekendstelling as " ‘n held vir ‘n nuwe geslag" bestempel "in ‘n land waar skynheiligheid ons almal ‘n bietjie leliker gemaak het" nie. Of dat oudpres. Nelson Mandela hom in die voorwoord van Witness to AIDS , wat reeds ná sy eerste week herdruk moes word, bestempel as ‘n
vigsaktivis "wat ‘n vlak van moed en menslikheid geopenbaar het wat baie ander tot aksie geï nspireer het" nie.
Tóg praat Cameron moeilik oor homself. En sy boek is nie ‘n te koop loop met eie prestasies of leed nie. Dit is eerder, presies soos wat hy sê, ‘n "instrumentalisering van die private". ‘n Poging om die "intens persoonlike as ‘n middel tot maatskaplike geregtigheid te gebruik".
AL is Engels sy eerste taal, praat die regter om m)375 ontwil in suiwer Afrikaans. "Ek wou skryf oor hartseer en verlies en heling, en die integrasie daarvan in ons bewussyn as inwoners van Afrika. Ek wou skryf oor probleme omhels eerder as wegskram daarvan. Daar is niks in die boek wat nie by daardie doelmatige beginsel inpas nie."
Dit is juis dáárom dat hy in die laaste hoofstuk skryf oor sy ervaring in ‘n kinderhuis op Queenstown, en oor sy pa se alkoholisme. Ons neem plaas aan die ontbyttafel van The Bay Hotel en hy praat met verbasende gemak oor ‘n tyd wat hy die grootste deel van sy lewe probeer vergeet het.
"Die kern van my politieke vorming lê daarin dat ek uit ‘n benadeelde omgewing kom. Ons was werklik armoedig en soms haweloos. Ons het in losieshuise gewoon, en moes dikwels trek omdat my pa nooit ‘n lang tyd ’n werk kon hou nie.
"Die groot deurbraak in my lewe was die feit dat my ma, ná my tyd in die kinderhuis, besluit het om my Pretoria Boys’ High toe te stuur. Dit het my hele lewe verander, en dit bly my elke dag by—die geleenthede wat die maatskappy vir jou skep."
Hy dink na. "Maar juis ómdat ek ‘n kans gegun is, is die kommerwekkende aan ons demokrasie dat ons ná 11 jaar stééds ‘n ongelyke maatskappy bly skep."
AS wit seun, ondanks ander agterstande, het die ongelykhede in die maatskappy hóm nooit juis geraak nie. Ná skool het Anglo American vir hom ‘n ope beurs gegee sodat hy Stellenbosch toe kon gaan, waar hy ‘n B.A.-graad in die regte en daarna ‘n honneursgraad in Latyn cum laude verwerf het. In 1976 is hy as Rhodes-beurshouer Oxford toe .
Terug in sy geboorteland, ná ‘n LL.B. van die Universiteit van Suid-Afrika, was sy opgang in die regte meteories. In 1983 is hy tot die Johannesburgse balie toegelaat, en drie jaar later het hy ‘n menseregtepraktyk aan die Universiteit van die Witwatersrand se sentrum vir toegepaste regstudie begin. In 1989 is hy tot professor bevorder.
In dié tyd, vóórdat Madiba hom in 1994 aangestel het as waarnemende regter in die hooggeregshof én as voorsitter van ‘n kommissie om onwettige wapentransaksies te ondersoek, het hy reeds as menseregte-aktivis naam gemaak. Hy was betrokke by die herverhoor van die Ses van Sharpeville , en in 1987 het hy die eerste keer ‘n minister
van justisie die josie in gemaak met sy kritiek op regters wat verdrukking onder die apartheidsbestel bevorder.
Tien jaar gelede is hy permanent as regter van die hooggeregshof aangestel. Vyf jaar gelede het hy regter in die appèlhof in Bloemfontein geword.
Die ander hoogtepunte in sy CV is op sigself genoeg vir ‘n boek: Hy was ’n stigterslid van Nacosa, wat onder meer ‘n handves met regte vir mense met MIV/vigs opgestel het. Hy het ook die Aids Law Project (ALP) by Wits gestig, wat baanbrekerswerk gedoen het om die regstelsel in te span om mense met MIV/vigs te verdedig.
Sedert 1996 was hy voorsitter van die Suid-Afrikaanse Regskommissie se vigskomitee. Daarbenewens is hy voorsitter van Wits se universiteitsraad, beskermheer van ‘n kinderhuis en ‘n hospitium , en mede-outeur van ‘n aantal boeke. Reeds van sy universiteitsdae af het hy toekennings ingeryg—te veel om hier op te noem.
JUIS dáárom—ómdat sy opgang so snel was -was sy herinneringe aan die kinderhuis in ‘n sin onversoenbaar met wat later gebeur het. Tot 1996, toe hy gevra is om op die Guild Cottagekinderhuis se jaarlikse geselligheid te praat en sy beskermheer te word. "Ek het besef dit sou vals wees om beskermheer te wees van ‘n kinderhuis en nie te erken ek was tussen die ouderdomme van 6 en 11 sélf in een nie. Dit sou my versterk in my begrip van die kinders se ervaring.
"Net so was dit aanvanklik ‘n tweespalt, ‘n ongerymdheid in myself, dat ek nie my vigsstatus bekend gemaak het nie. Ek het nie die geheelbeeld van my betrokkenheid by vigs beskryf nie."
Hy dink na. "Maar dis uiters belangrik om die openbare en die private te integreer. Toe ek uitgepraat het, was dit ‘n geweldige verligting. Dit het my nét tot voordeel gestrek."
Nét soos wat hy meen sy openlike stelling dat hy gay is, is nog nooit teen hom gehou nie. "Nadat my kortstondige huwelik misluk het, het ek in my laat twintigs die eerste keer uit die kas geklim. Ek hoor nie wat mense agter my rug sê nie, maar ek het nog nooit enige benadeling vermoed nie."
Hy giggel. "Die enigste keer dat daar dalk wenkbroue gelig is, was toe ek in 1995 ‘n manlike metgesel na ‘n regtersdinee geneem het. Die regters het met geweldige hoflikheid gereageer, maar dit het dúrf gekos."
MAAR, sê hy, hy het nog altyd ‘n punt daarvan gemaak om nie sy persoonlike menings te laat inmeng in sy regterseed nie. Wat hy wél nie kon verhelp nie, was dat sy persoonlike ervaring hom ‘n dieper insig in misdaad gegee het—én in vonnisoplegging.
Ek aarsel. Dit is nie elke dag dat ‘n mens ‘n regter moet uitvra oor sy eie pa wat in die gevangenis was nie. Wéér antwoord hy sonder skroom. "My pa se alkoholisme was een van die mees diepgaande invloede in my lewe. Sy verslawing en sy onvermoë om sy lewe te laat vlot, het baie skade gedoen. Dit was egter ook ‘n aansporing vir my en my suster. Ons was vasberade om nie in dieselfde ellende te verval nie."
’n Stilte; sy stem word sagter. "Tóg het ek deernis en meelewing met hom gehad. En ek kyk anders, en met groter deernis na ander wat by misdade betrokke raak."
Nóg ‘n stilte. "Nie dat ek ‘n sagte regter is met vonnisoplegging nie. Maar dis beslis die moeilikste deel van my werk."
WAT wél die grense van die toelaatbare op die regbank uitgedaag het, was Cameron se deelname aan die politieke debat oor MIV/vigs. Soseer dat hy ’n twééde keer op die vingers getik is deur ‘n minister van justisie (dié keer dr. Penuell Maduna), weens "snedige politieke aanvalle" op die uitvoerende gesag.
Dit was nadat hy die ontkenners van die Jodeslagting deur die Nazi’s vergelyk het met die soort vigsontkenning wat nog tot onlangs politieke besluitneming in Suid-Afrika gekenmerk het. Maduna het verkeerdelik beweer dat Cameron gesê het die regering se vigsbeleid is "Hitleragtig".
Die regter kies sy woorde versigtig. "Ek dink nie regters moet of kan op ’n opvallende wyse aan die politiek deelneem nie. Ek sou nooit aan ‘n politieke optog deelneem nie, en ek is nie ‘n lid van die Treatment Action Campaign (TAC) nie.
"Maar wanneer jy wél uitpraat, moet dit ‘n nederige en oorwoë mening wees. Jy moet ‘n grondige, selfs dwingende, regverdiging hê waarom jy die perke oorskry wat deur die konstitusionele hof aan jou as regter gestel is.
"Ek glo met die hantering van MIV/vigs in SuidAfrika het dié regverdiging bestaan. Ek hoop nie dit sal ooit weer nodig wees nie."
Of hy spyt is oor wat hy gesê het? Hy aarsel. "Jy kan nooit sonder spyt wees oor enigiets nie, en ek sal nooit honderd persent seker wees daarvan dat ek reg was nie. Waaroor ek egter verál spyt is, is oor vigs en die verwarrende standpunt wat die regering daaroor ingeneem het. Ek is ook spyt dat ek móés praat. Ek wou ‘n regter wees. Ek wóú nie betrokke raak by ‘n politieke debat nie."
Ek vra dit huiwerig: En nou? Voel hy steeds, soos destyds, daar bestaan ’n "krisis van optrede" wat MIV/vigs in Suid-Afrika betref? Hy herkou lank aan die vraag, en dan: "Die situasie het drasties verander sedert 9 Augustus 2003, toe die regering die eerste keer te kenne gegee het daar kom ‘n nasionale antiretrovirale behandelingsprogram."
’n Kug. "Maar ons het nog nie onomwonde en hartlike leiding oor vigs nie. Die minister van gesondheid gee nog haar ambivalensie te kenne en ons het nog nie die uitgesproke leierskap wat ons land nodig het nie."
Tog is dit verbasend hoedat hy van persoonlike aanvalle wegskram. En dï t terwyl die minister van gesondheid, dr. Manto Tshabalala-Msimang, blykbaar nie skroom om hóm te na te kom nie.
Die laaste keer was einde verlede jaar toe sy glo ‘n vigs-gids laat aanpas het—onder meer om alle verwysings na die TAC en gay mense uit te haal. Een van die eerste name wat moes waai, was dié van regter Cameron.
Hy lyk ongemaklik. "Al wat ek kan sê, is dat ons nog nie die ideaal van ’n nasionale beleid en leierskap oor vigs bereik het nie. Vigs is ‘n politieke issue , maar dit behoort nie ‘n partypolitieke kwessie te word nie. Hoe gouer ons die tweespalt kan beeindig, hoe beter."
MAAR vigs ïs nie bloot politiek nie. Dit is ook ‘n hoogs persoonlike kwessie - een wat die intiemste, die mees weerlose dele van die menslike psige blootlê. Ek dink aan een van die laaste sinne in sy boek: "Remembering is in me, like blood ."
Ek vra sag - amper bang dat hy my hoor: En die dood? Hoe het u diagnose u as mens verander? Hy kyk by die venster uit na die branders wat uitswel, dan wit skuimvlokkies word. "Sedert my diagnose het alles verander. Dit is ‘n skokkende, ‘n aardige ervaring om so met jou sterflikheid gekonfronteer te word. Dit beïnvloed alles, en dit beteken nie jy kan onmiddellik ‘n balans handhaaf nie."
Hy haal sy bril af. "Maar die publikasie van die boek het beteken ek kan op geestelike en op praktiese vlak iets opsy sit. Ek hoop dat ek oor tien jaar ‘n produktiewe lewe sal kan lei as ‘n regter in SuidAfrika met ’n epidemie waarvoor daar ‘n entstof en eenvoudige behandeling bestaan."
’n Glimlag. "En ek hoop dat ek in die tyd wat vir my oorbly as regter ‘n groter bydrae tot Suid-Afrika se regslewe kan lewer. Dat ek nie gedwing word om by ander omstredenhede betrokke te wees nie."
HY gee ons die hand en loop terug oor sy spantou tussen die private en die openbare. Kiertsregop, sonder om een keer te wankel.
William Saunderson-Meyer - Natal Witness - 21 May 2005
It's time to eat my words
No one likes to be wrong. Being a columnist affords one some protection in this regard, since one can choose in one's own writing simply not to acknowledge one's errors of judgment.
But sometimes one is so wrong that only a public climb-down will suffice. Reading Justice Edwin Cameron's recent book, Witness to Aids, it became apparent that this is such a time.
When Cameron appeared before the Judicial Service Commission (JSC) in 1999 and chose to publicly state that he was HIV positive and "living with Aids", as he put it, this columnist was sharply critical. I thought it entirely inappropriate for a jurist seeking elevation to the bench of the Constitutional Court to make his health a political issue in the selection process.
Interestingly, while the JSC lauded Cameron's candour and he was their first choice to be appointed, the Cabinet did not concur. He was passed over for the Constitutional Court bench, although he was later appointed to the Supreme Court of Appeal.
My reservations regarding Cameron did not stem from a social conservatism: over the years I have written literally dozens of columns on the topic of HIV/Aids and the perverse intransigence of President Thabo Mbeki and his supporting cast of African National Congress Aids denialists. And, in fact, at the time of Cameron's bombshell in front of the JSC, I defended him in print against a rabidly homophobic attack by Democratic Alliance MP Graham McIntosh.
Nevertheless, on reading Witness to Aids, I realised that I had misunderstood Cameron. What I had taken to be an attempt at lobbying, an attempt at using his affliction and sexual preference in order to exploit the political correctness of the JSC-appointment committee, was nothing of the kind.
The purpose of Cameron's public statements was twofold.
Firstly, it was to move beyond the shame - his own and that of society - of having a sexually-transmitted disease. As he puts it in the book, "the perception that having Aids was something unworthy, disgusting, unclean, improper".
Secondly, it was with the hope that others would follow his example and break their silence, thus stripping Aids of stigma and reducing it to being another disease. This did not happen. In our own Parliament, where the antiretrovirals denied the ordinary populace have long been available to MPs on medical aid, the silence is deafening. In the whole of Africa, the continent most blighted by the disease, not a single parliamentarian has stepped forward to admit to be living with HIV or Aids, Cameron writes.
The reason for this silence is Mbeki. There is some irony in the fact that when Cameron spoke out, Mbeki - who was deputy president at the time - was one of the first to welcome his announcement, saying that disclosure was necessary to help curb the spread of Aids. Mbeki's Internet epiphany must have happened soon afterwards, because just a few months later he first articulated his scepticism regarding the link between the virus and disease.
The rest is history: wasted years, wasted lives.
The Medical Research Council has just released statistics showing that more than 41% of the deaths in KwaZulu-Natal are from Aids. Nationally, HIV/Aids is the leading cause of death and premature mortality for all provinces, causing almost 30% of all deaths.
Minister of Health Manto Tshabalala-Msimang continues to insist, knowing it to be false, that antiretrovirals are poison and that a concoction of garlic, onions, olive oil and African potatoes is more efficacious than the drugs. One can only hope that the fundamentalist vision of hell exists and that as penance she will spend eternity in it, endlessly rereading Cameron's wonderfully lucid and honest book.