Vindication of the Rights of People with Mental Illnesses to be People

“Ms Mahlangu, Dr Selebano and Dr Manamela … refused to stop the mass transfer of mental health care users to non-governmental organisations not fit for purpose. They chose, knowing all the facts and risks, not to be responsive to the reasonable and lawful request and demands of the claimants. Their attitude was perhaps summarized by Ms Mahlangu who on one occasion retorted that: “If I were a prophet Justice, I would have had foresight.”

Life Esidimeni Arbitration Judgment of Justice D Moseneke, para 199.

On Monday, March 19 2018 in hours immediately after Justice Dikgang Moseneke read out the last lines of his judgment in the Life Esidimeni Arbitration, there was a media scrum the likes of which I have not experienced before. Microphones and cameras demanded immediate comment and response. I obliged. But as I shuffled from interview to interview, my brain was silently roaring in protest. It hadn’t yet had time to makes sense of what had just been said. I felt disoriented, not only by the dense layers of the judgment, but by the whole drama of the Life Esidimeni carnage.

My brain wanted to short-circuit. There was too much to process, too many layers, too much emotion, too much answered. Too much still unanswered.

The sudden demand to offer soundbytes was a shock to the senses, a sharp juxtaposition to the quiet of the preceding hours.

Justice Moseneke had read out his findings in the Pavillion Room of the Emoyeni Conference Centre, once the living room for generations of Randlords hoarding an elite’s-eye view over the Johannesburg forest. There was near silence. In a room of several hundred people, there was a palpable sense of pain and expectation.

At times, it felt like the ghosts of the 144 dead were also present.

I sat jammed between two people whose family members had been “tortured” – Moseneke’s word not mine – and then died. On my left was 80-year-old Rev Joseph Maboe, whose oldest child Billy had been transferred to Bophelong, a fake NGO in Hammanskraal despite the Reverend’s explicit resistance. Rev Maboe was not contacted when Billy was moved, or told to where he had been moved. Billy was only located after he called his father on his birthday.

When the Reverend next met Billy he was “dehydrated; he was hungry; he was filthy; he was smelly”; Rev Maboe could see “death in his (son’s) face”. Billy was so hungry that he ate the plastic packet the chips had come in. Billy died on 22 July 2016, six days after reuniting with his father.

Apart from Justice Moseneke’s voice, is all I could hear was the hum of the translation being fed into my neighbour’s ear. And the occasional stifled sob. As the now familiar story was unraveled one more time there was rapt attention. This time though, the story of pain was not told through the mouth of a poor “nobody”, but through the “legitimate and authoritative” mouth of a judge. A distinguished man had picked up the scattered pieces of a jigsaw and made them into a picture.

The picture told a tale

The tale was a terrifying one. In his opening paragraph Justice Moseneke summarised it as “a harrowing account of the death, torture and disappearance of utterly vulnerable mental health care users in the care of an admittedly delinquent provincial government … a story of the searing anguish of the affected mental health care users and of the collective shock and pain of many other caring people in our land and elsewhere in the world.”

Listening to Justice Moseneke for three hours felt like a form of water torture. I wanted to put a pause on the words that described the multiple and serial human rights violations and assaults. Or perhaps just fast forward through the thickets of ugliness and sorrow to get to the end. But this was real time. No such numbing facility existed.

That partly helps explain why the end, when it came, was such a relief. Families wept and hugged lawyers. Lawyers wept and hugged families. Politicians like Gauteng Premier David Makhura looked gobsmacked. The lightening bolt had missed them, but only narrowly. Such scenes of joy and sorrow have not been seen inside a court room (except it was not really a court room) since the great political trials of yesteryear.

Somewhere, far out of sight, Qedani Mahlangu, Barney Selebano and Makgoba Manamela – must have turned off their TVs and wondered what to do next. All though not a criminal trial they had been fingered, their testimony described as “plainly untrue” “patently untrue” “fabricated” “convenient”; their conduct “irrational, inexplicable and highly reckless” in Mahlangu’s case “with an ulterior motive that remains concealed”; their actions and inactions directly connecting them to forseeable deaths and torture.

Their years of their impunity and no accountability were about to be over.

In that context I did my best to sound sensible in front of the media. But, we must all admit, there’s something much deeper going on here.

After one night’s rest, whatever it is that the sub-conscious mind does during sleep to try and order and organise experience, had begun to make some sense and draw some conclusions.

First of all, I made up my mind that the outcome of the Life Esidimeni Arbitration cannot be called a “victory”. How can you call something a victory, when what started the process was something so murderous and degrading, so inhumane.  The constitutional damages are ground-breaking, and will bring unknown material relief to these many poverty stricken families, but a million rand cannot erase the stain.

Instead, what Justice Moseneke gave us was a vindication of rights. Most importantly it was a vindication of the rights to dignity of people that many sub-consciously consider to be lesser beings, children of a lesser God, people with mental illnesses. Moseneke refuted this by insisting that people with mental illness are rights-bearers, people with as much inherent dignity and capacity to love, to suffer, to dream, to feel joy, as the rest of us.

Lawyers and scholars will dissect and write about this judgment much more intelligently than I can. However in this one particular respect Justice Moseneke bent the legal stick in an important direction towards incorporating values of equality and Ubuntu. Generally, the law calculates the quantum of damages according to a crude assessment of the economic value of the injured or deceased person. Thus, a Michael Komape is worth next to nothing, because he was a child of a poor family. People hospitalised with mental illnesses, wards of the state, even less. But Justice Moseneke’s approach in awarding constitutional damages of R1-million per tortured person – dead or alive – begins to change this line of legal thinking – if not yet the jurisprudence. Moseneke seems to be say ‘measure life by the dignity and capability that inheres in each of us’. Not by our money-making potential.

What price, what value, a poor life? There’s the rub

In the hours immediately after the judgment I described the Life Esidimeni mass removals as the greatest loss of life due to state and political failure that has taken place in our democracy. It’s number one on the podium. Even the Marikana massacre pales in comparison. Death by Listeriosis might now be in contention.

But my rested brain reminded me that I’m wrong. Less than 20 years ago hundreds of thousands of poor people died needlessly when then President Thabo Mbeki, Heath Minister Dr Manto Tshabalala-Msimang and their parasitic supporters, chose to deny them life saving anti-retroviral medicines as they became sick with AIDS, made some of them doubt the efficacy of these drugs and take quack remedies instead. After several years Mbeki’s comrades found the courage to over-rule him. But there was no Inquest or Arbitration into the denial of access to or questioning of AIDS treatment.

Judge Moseneke has ordered the construction of “a monument at an appropriate and prominent location”. Yet for the victims of AIDs denialism there is still no official, constitutionally sanctioned place, for the families of the dead to tell their stories. There was no sanction. Indeed, some leaders are in the process of re-cycling Mbeki as a worthy elder statesman.  They seem already to have chosen forgetting over memory.

So measured against AIDS impunity, the judgment in the Life Esidimeni arbitration was a vindication of an accountability that would not have happened 15 years ago.

Our democracy is striking back against impunity. Let’s hope it continues along this road.

The judgment was also vindication of the families who struggled for Justice. People like Christine Nxumalo – one of the leaders of the family committee – endured not just the loss of her sister, but her niece as well. Despite pain and poverty, despite coming from different backgrounds and communities, the families came together. Steadfastly, mostly out of sight, they told their stories. Each affidavit and testimony put before Justice Moseneke became a jigsaw piece, a refusal to forget.

One thread of the Life Esidimeni story is about fake NGOs, of which there are many, many more than those that occupied the Esidimeni stage. But it took real NGOs, like the South African Depression and Anxiety Group (SADAG) and SECTION27 to vindicate people’s rights.

Another thread of the story was of fake health professionals, men and women who have turned their backs on their duty of care to protect “handsome monthly salaries” or in pursuit of “ulterior motives”. But it was real health professionals like Dr Mvuyiso Talatala, a psychiatrist who builds on the traditions of those doctors who took risks to challenge apartheid medicine, whose testimony showed that there remains much good in our system.

If only we recognized and rewarded it.

Finally, by the next morning, I understood how although Qedani Mahlangu and her crew had dragged the Constitution into the mud, for one of the first times they were not able to do so with impunity. Ultimately, Justice Moseneke’s judgment and order was a vindication of the Constitution. It was proof that even in a Constitutional order good and evil will be in contest. Perhaps especially so. But where good organizes and fights back, justice may triumph.

On Human Rights Day 2018 that, perhaps, is a green-shoot for the beginning of a new accountability and respect for human rights in our democracy. Whether that shoot takes hold though depends on all of us.

The madness and evil of Manto and Thabo meets the madness and evil of Bathabile and Jacob

By Anso Thom

Having reported with many journalist colleagues on the darkest days on former President Thabo Mbeki and his health minister Dr Manto Tshabalala-Msimang’s distressing, fatal and quite mad HIV-denialism, the latest saga around social grants did bring back a sense of déjà vu. The denialism of the very real crisis and potentially devastating impact on the poor, spearheaded by President Zuma and his Social Development Minister Bathabile Dlamini, brought back some painful memories.

Once you start joining the dots and making the links, the similarities in some instances are remarkable.

Under Mbeki and Tshabalala-Msimang we had the following:

  • A President in denial and gone rogue on science, medicine, the Constitution and human rights.
  • A morally corrupt Minister who for various reasons allowed herself to become the President’s henchwoman
  • A President who not only denied that lifesaving drugs needed to be made available, but also denied that these medicines were actually efficacious.
  • A Minister who with great zeal not only became the President’s denialist spokesperson, but took his denialist rambling to the next level, by adding garlic, lemon, beetroot and olive oil to the mix.
  • Bewildering press conferences where the health minster even resorted to speaking Russian and chastised the media when she did not feel like dealing with tough questions.
  • Corrupt individuals and companies circling like salivating hyenas, desperate to make a quick buck with all kinds of untested quack potions as a replacement for anti-retrovirals. Some unethical like Virodene, others shady charlatans like Matthias Rath.
  • A Cabinet who failed to hold either the President or the Minister accountable, or not until many had died or suffered.
  • A President happy to sit in the shadows and let the Minister take the body blows.
  • Showing a middle-finger to the Constitution by failing to honour the Right to Healthcare.
  • Tacit support of views that harmed mostly poor people.

We ended up with a poisonous concoction which not only made us the laughing stock of the world (a quick google of the 2006 Toronto AIDS conference will offer enough evidence), but also spread terror, confusion and heartache among poor people who could not afford the lifesaving medicine. These vulnerable people were on the receiving end of so many conflicting messages from their leaders, people who they looked up to for guidance.

Fast forward a couple of years to 2017 and again we have a similar recipe albeit with slightly different ingredients.

  • A President in denial and gone rogue on administrative procedure, social good, the Constitution, his responsibilities as a custodian and human rights.
  • A morally corrupt Minister who becomes the President’s henchwoman.
  • A President who denied there was a crisis (no crisis until there is a crisis, he told Parliament).
  • A Minister who with great zeal spread the message of confusion and stubborn denial with no thought for the poor who deal with the uncertainty of not knowing whether or not their grants will come.
  • Bewildering press conferences where the Minister and her spokesperson at times refused to speak English, take legitimate questions from the media, opting to rather chastise them for doing their jobs.
  • Corrupt individuals circling like hyenas, knowing that the social grants contract in this country is worth Billions.
  • A Cabinet who failed to hold either the President or the Minister accountable.
  • A President happy to sit in the shadows and let the Minister take the body blows.
  • Showing a middle-finger to the Constitution by failing to implement a Constitutional Court order to stop Cash Paymaster’s contract.

But perhaps that is where the similarities end. Many have tried to understand how Mbeki, by all accounts an intelligent man, became so swayed by the denialist theories that he was willing to risk his legacy, to reject science, science that actually saves people’s lives. Tshabalala-Msimang, a medical doctor by training, went from a poster child of good health to a pariah who did not miss an opportunity to promote her vegetable remedies. Whatever motivated their deadly denialism, it seems unlikely that corruption had much to do with it.

In this regard Jacob Zuma and and Bathabile Dlamini are not quite the same as their earlier Comrades in that one cannot but think that the absolute chaotic handling of the social grants matter, has a stench of corruption. A stink of lining the pockets of friends and ensuring that money, lots of it, ends up in the right or wrong places, depending on which team you back.

But corrupt or not, the past and present again converge when both the Mbeki and the Zuma teams, chose then and again choose now, to turn their backs on the cries of the poor. To block their ears and continue to operate in a “lala-land” where there is “no crisis” and we live in a “funny” democracy.

But now, as then, there is nothing funny when a President turns his back on the poor. There is nothing funny when Ministers, heading up Departments which  exists to serve the poor, are prepared to laugh off legitimate concerns and play silly buggers with semantics.

How galling it was to receive a graphic on Whatsapp last week, Minister Dlamini grinning in the one corner. A massive hashtag in bold, red letters #SASSACARES screaming at the receiver.

A line which reads” All social grants will be paid out from the 01 April 2017 as promised by our caring Government”.

“Caring” Government? Not then, not now. Now as then, government has lost touch with the reality faced by poor people in South Africa. For this, Zuma and Dlamini will pay the price as Mbeki and Tshabalala-Msimang did – only this time, another decade further into ANC rule, they will also likely drag the party down with them.

Return of the quacks

By Anso Thom

For a long time, South Africa has been a country where charlatans are able to flourish and peddle dangerous remedies for all kinds of ailments.

Take a trip on a public train or a walk down a road in our city centres and you will easily find pamphlets marketing remedies for anything, from enlarging penises to bringing back lost lovers. Even more seriously, the city lamp poles are plastered in posters offering cheap pregnancy termination services. Poor people stand on street corners for hours offering pamphlets and directions to the closest ‛doctor’. All illegal, all dangerous, but almost all operating with impunity.

The reasons these quacks proliferate are many. Not so long ago we had a president and health minister who created an enabling environment for them. President Thabo Mbeki questioned the efficacy of lifesaving anti-AIDS medication, told people they were toxic, and dragged his feet when it came to signing into policy the rollout of these medicines for the thousands who were suffering and dying.

His Health Minister, a medical doctor, Dr Manto Tshabalala-Msimang spoke often and passionately about the so-called healing properties of beetroot, garlic, lemon and olive oil. People sniggered, referred to her as Dr Beetroot and shook their heads.

Take a trip on a public train or a walk down a road in our city centres and you will easily find pamphlets marketing remedies for anything, from enlarging penises to bringing back lost lovers. Photo:Wikipedia

But what Mbeki and Tshabalala-Msimang had done successfully, was to sow seeds of doubt. Many, many people living with HIV, desperate for a remedy not only to control the virus, but to exorcise it from their battered bodies, turned to the quacks, who promised to do so. What was criminal was that these ‛doctors’ were operating with the tacit support of the leaders who had the power to close them down.

They included the likes of German multi-vitamin peddler Matthias Rath, KwaZulu-Natal truck driver and seller of a concoction called uBhejane (the recipe of which he said was revealed to him in a dream by his ancestors) Zeblon Gwala, the likes of Tine van der Maas a barefoot Dutch nurse who pushed lemon, garlic, beetroot and olive oil concoctions at the behest of the health minister, or Belgian eccentric Kim Cools who continues to claim that he had injected himself with the HI virus but remains negative due to his remedies (see previous Spotlight).

Activists told stories and journalists wrote articles of the heartache these people had caused – the undignified deaths of mothers who left families orphaned as they dumped their antiretrovirals for Rath vitamins, the fatal and excruciating suffering of the much-loved DJ Khabzela after the health minister sent Van der Maas to heal him, or the illegal Rath clinical trials conducted on poor people, made to strip, have their photographs taken and give their blood.

And then there was Virodene – a powerful chemical detergent peddled by a bunch of crazy scientists as a cure for AIDS, which had as its cheerleader President Mbeki.

Mbeki and Tshabalala-Msimang were not alone in the rejection of proven treatments. Tshabalala-Msimang’s MECs either turned a blind eye to the fact that people were being used as guinea pigs, or did everything in their power to deny poor people access to lifesaving drugs.

Sibongile Manana was the MEC of Health in Mpumalanga at the height of the denialism years from 1999 to 2003. Now she is a Member of Parliament. As MEC she gave the Greater Rape Intervention Project (GRIP) in Nelspruit hell. She bullied Rob Ferreira Hospital’s Dr Thys von Mollendorff, a gentle caring doctor whose only crime was to try and help rape survivors. He offered them a dignified, safe space in his hospital where they were given the option of accessing legal, tested antiretrovirals to prevent infection. But Manana hounded Von Mollendorff and GRIP out of the hospital and treated them like criminals, dragging them to court and evicting them from the hospital.

Penny Nkonyeni, MEC for Health in KwaZulu-Natal during the Manto years, often rolled out the red carpet for her Minister. She printed quack pamphlets for distribution, hounded doctors who dared to offer pregnant mothers the option of treatment to prevent transmission of HIV to their babies, and she was a willing partner in finding crooked NGOs prepared to run illegal clinical trials using quack concoctions. Nkonyeni was later the speaker in the provincial parliament and Education MEC before being removed in a Cabinet reshuffle earlier this year. She indicated she was joining the private sector.

The examples are many and for those who were there, these memories are painful. Those who were there made a pact saying, never again.

Fast forward to 2016.

Dr Benny Malakoane is a medical doctor and was until recently Health MEC in the Free State. Over a three-and-a-half year period he oversaw the collapse of the public health-care system in the province, and turned the state machinery on elderly community health workers who were asking inconvenient questions, while facing multiple charges of fraud and corruption (these cases are still ongoing due to continued delays).

It now appears that, much like Manana and Nkonyeni, Malakoane has enabled a quack to operate with impunity in a state hospital, using unsuspecting state patients as guinea pigs in an illegal stem cell trial. In fact, this operation had been signed and sealed in a three-year contract which was due to further impoverish the Free State health system and enrich the shareholders of ReGenesis Health with millions of rands.

Questions must be asked over the enthusiasm of the MEC in signing this contract and personally overseeing its implementation. One has to ask how the MEC could be so enthusiastic in rolling out an untested stem cell intervention in the Pelonomi hospital’s orthopaedic department while his health system is collapsing and failing to get basic medicines to clinics and hospitals.

The Medicines Control Council led by Professor Helen Rees intervened within days of health minster Dr Aaron Motsoaledi becoming aware of this contract. It is refreshing and heartening to know and see in action the difference an ethical, incorruptible and no nonsense health minister and medical doctor can make. If only we had someone like Dr Motsoaledi in the early 2000s.

The MCC swiftly closed the ReGenesis operations at Pelonomi and have made it clear that according to the information they have, an illegal trial was being conducted, using an untested intervention.

For now, the operations have been brought to a halt and the Free State Department of Health has cancelled the contract. The MCC has sent ReGenesis a comprehensive list of questions, and Free State Premier Ace Magashule has been left with the task of holding his MEC accountable. Don’t get your hopes up.

Within a day of the information being revealed by Spotlight and the investigative television show, Carte Blanche, Free State premier Ace Magashule shifted his Health MEC to Economic and Small Business Development, Tourism and Environmental Affairs, and installed his former Police, Roads and Transport MEC Butana Kompela as the health custodian.

However, we cannot allow another quack enabler to get away without being held accountable.

The Free State Department of Health and Premier Magashule have to provide answers to some very serious questions. For instance, why did the Free State Department of Health publish a tender for stem cell therapy in the first place? On what basis was ReGenesis appointed in June? Why was Malakoane so closely involved with the project, chairing the board that would provide oversight of the work and research done by ReGenesis?

Simply shifting Malakoane to another post doesn’t make these questions go away. For there to be any accountability we need answers to these questions. The people of the Free State are not guinea pigs. They are not pawns in an alleged scam to enrich charlatans.

Not on our watch. The ball is in your court Premier Magashule