Life Esidimeni: Portraits of Lives Lost tells personal stories and calls for mental health reform

Sasha Stevenson is a human rights lawyer and executive director of SECTION27. (Photo: Supplied)

By Takudzwa Pongweni

1 Aug 2024

Harriet Perlman and Mark Lewis’ upcoming book, Life Esidimeni: Portraits of Lives Lost, highlights the deep emotional impact on families and underscores the systemic failures that led to the deaths of 144 mental healthcare users.

“For me, what was most important was that we got to meet and know the people who had been left behind and suffered because they were starting to become numbers, the 144-plus, and actually their experiences and stories really are at the heart of what happened.”

This was said by author Harriet Perlman, who together with photographer Mark Lewis, documented the families’ loss and sorrow in a book to be released in mid-August.

Titled Life Esidimeni: Portraits of Lives Lost, it pays tribute to the people who had someone they loved cruelly taken from them in the tragedy and tells the story of those who fought back.

Perlman was speaking on Wednesday evening during a virtual conversation about the book and the ongoing struggle for better mental healthcare in South Africa.

The conversation featured Koketso Moeti, the Founding Executive Director – amandla.mobi, Christine Nxumalo, a mental health activist and member of the Life Esidimeni Family Committee, and Sasha Stevenson, the executive director of SECTION27, which represented many of the families of those who died, at the Life Esidimeni arbitration and inquest.

The background

The tragedy unfolded in 2016 when more than 1,400 mental healthcare users were moved from the Life Esidimeni health facility to unsuitable non-government organisations as part of a cost-saving measure.

Stevenson said SECTION27 became involved around October 2015, after the South African Depression and Anxiety Group (Sadag) informed them that families had contacted them about rumoured plans to close Life Esidimeni.

“Families were scared, because many people had lived with the loved ones who were in the Life Esidimeni facility and knew the care that was required and knew the care that they were receiving at the facility, and so they were saying, ‘We know that this isn’t feasible, please help.’

civil society Life Esidimeni Christine Nxumalo and her late sister Virginia Machpelah, a Life Esidimeni victim. (Photo: Mark Lewis)

“So, together with Sadag and the South African Society of Psychiatrists, and the families, we started engaging the Gauteng Department of Health, asking: What’s the plan? And we were systematically shut out.”

In November 2015, civil society organisations and families of patients unsuccessfully pleaded with the department to slow down in its plan to move the patients. Litigation was launched against the department in December 2015 and a settlement was reached that required the department to provide a safe plan for the transfer of the patients.

“They undertook to consult with families in the whole process and to ensure that if people were moved out of Life Esidimeni, they would receive care that was at the same level or better than people had received within Life Esidimeni,” said Stevenson.

“We all thought now that the government has made these undertakings, surely they’re not going to continue with the poorly thought through process. Unfortunately, we were wrong.”

A chaotic process

In March 2016, the majority of patients were moved from Life Esidimeni to NGOs.

“Lots of questions were being asked. We were asking how mental health users were being assessed to make sure the government knew exactly what their needs were, how NGOs were being assessed, what the financing was, how the mental healthcare in a community was strengthened, and we just weren’t getting any answers,” said Stevenson.

Nxumalo lost her sister, Virginia Machpelah, in the tragedy. Machpelah suffered from early-onset Alzheimer’s and had lived at Life Esidimeni Randfontein Care Centre for two years before being moved to the Precious Angels NGO. Nxumalo said the moving process was traumatic.

Koketso Moeti, the Founding Executive Director – amandla.mobi. (Photo: LinkedIn)

“I think … (for) two weeks we couldn’t get through to the NGO, and the Department of Health was not reaching out. We were not getting any information. We couldn’t find her for at least two weeks. I can’t explain that feeling, it feels like somebody is trying to cut your heart with a blunt knife and it was the most horrific feeling,” she said.

Stevenson said there was still no clear indication of how many people went missing during the moving process.

“The fact that we don’t know shows how chaotic this whole was and this is something that the South African Society of Psychiatrists had warned about when the issue first arose. They said when deinstitutionalisation is done badly, there are real risks to people, including homelessness,” she said.

Remembering the happy moments

Perlman said they had chosen to take portraits in people’s homes to better understand where people lived and who they were. She dismissed claims that relatives had dumped their loved ones in Life Esidimeni and didn’t care for them.

She said it was striking how far families lived from the Life Esidimeni facilities where their loved ones were patients and yet they would travel to see them.

“Most people were unemployed, had small piecework, and getting them to the facility was a huge, huge thing, and that was very striking for us,” she said.

She mentioned Patrick Mpiti, who lives in Magaliesberg. His mother, Sannah, was admitted to Life Esidimeni Randfontein.

Read more: Portraits of lives lost: Patrick Mpiti’s mother, Sannah, died a long way from home

“He was unemployed and to get to see her, he would take three different taxis and it would take a six-hour round trip. So to then say this is a man who didn’t care is just so completely outrageous,” said Perlman.

Perlman said that photographs trigger a range of memories, including painful memories of looking at someone you loved who has gone, but also happy memories of the people they lost.

She noted how another relative of one of the victims would bake for her aunt, who later died in the tragedy.

“I remember Sophie Mahlatsi telling us and describing this delicious pear cake she used to love to make because she knew that’s exactly what her aunt liked, and how they would bake it and take it and this made her aunt smile,” she said.

Read more: Life Esidimeni: Arbitration draws to close by remembering some of the victims of the catastrophe

The ongoing struggle for better mental healthcare

Nxumalo said she hoped the book would also help to address the larger societal stigma around mental illness.

“We’re doing this because we don’t want our loved ones’ deaths to be in vain, but we also want the rest of the system to shake up and do their part,” she said.

“The quality of service is not there, the stigma still remains. You would have thought that 144 people dying in horrific and horrendous ways would actually shake up the mental health sector. But it just seems to have gone on like normal; things are regressing rather than getting better.”

Read more: SA’s new mental health plan and the problem of stigma

Nxumalo said all the professionals involved in the tragedy belonged to professional bodies that had failed to step up and take action against them.

“Surely there must be consequences that come with that, and I must be honest with you: all the bodies that represent the people that were involved honestly let the families down. We were incredibly disappointed, and still are, because it means this is the norm,” she said.

Stevenson voiced similar sentiments, saying that the Health Professions Council of SA and the SA Nursing Council had failed to respond to complaints sent to them about this issue.

Sasha Stevenson is a human rights lawyer who’s been there, done that and earned the T-shirt. (Photo supplied)

“The other thing that strikes me is it’s clear from the evidence given at the inquest and also at the arbitration how difficult it is for health professionals when there is a blurring of the political and the administrative departments,” she said.

“I think that’s another lesson that we need to take for health professionals, but also for the structures of departments. There needs to be independence and the expertise of people within the system needs to be recognised.”

Perlman spoke about the need for a culture of service and care.

“We wanted to interview … health professionals and nurses about how they felt handing over patients who they’d loved and looked after for many, many years, without files — and not one was comfortable to speak to us. They were scared to; this culture of fear and impunity and arrogance has to change so that people feel able to talk, to speak up,” she said.

Stevenson said accountability would ensure a similar tragedy never occurred again.

“That’s why we’ve gone forward with the inquest. The judge has made findings. It’s up to the NPA [National Prosecuting Authority] now to decide whether to prosecute former MEC Qedani Mahlangu and mental health director Makgabo Manamela. Accountability is what can really contribute to preventing these kinds of tragedies from happening,” she said.

Nxumalo said: “We need everyone in this country to see and hear this story. We must put it out there so people understand what happened, how it happened and why. Or will we just forget and learn nothing?” DM

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South Africa

The background

A chaotic process

Remembering the happy moments

The ongoing struggle for better mental healthcare