BOOK REVIEW

The missing voices of the Life Esidimeni tragedy

Sandra Ferreira

Global Mental Health Peer Network, Johannesburg, South Africa. Email: sandra.ferreira@gmhpn.org

Book Title: Life Esidimeni: Portraits of Lives Lost
Editors: Harriet Perlman and Mark Lewis
ISBN: 9781431435203 (paperback, 138 pp)
Publisher: Jacana Media, Johannesburg, ZAR320
Published: 2024

Life Esidimeni: Portraits of Lives Lost is a moving tribute to the 144 mental health patients who lost their lives from 2016 due to systemic neglect, abuse, and the failure of the Gauteng public health system. Harriet Perlman and Mark Lewis recount the tragedy that goes beyond being just a record of one of South Africa's darkest moments in mental health care; it is an urgent call for justice, accountability, and the reform of a system that has failed not only its most vulnerable citizens but also the families and caregivers who love them.

The tragedy of Life Esidimeni was not just about the 144 lives lost. It affected over 1700 patients and their families -human beings who were treated as mere numbers, shuffled from a place many called home to unregistered and ill-equipped NGOs with no regard for basic human life. The authors open the book by immediately confronting the reader with the grim reality of these events. In a country where mental health care is already underfunded and often misunderstood, the Life Esidimeni disaster was the culmination of years of mismanagement, corruption, and indifference towards mental healthcare users and ultimately, the community as a whole.

Perlman sheds light on the mammoth efforts made by various organisations, such as the South African Depression and Anxiety Group (SADAG), SECTION 27, and the South African Society of Psychiatrists (SASOP), to prevent this catastrophe. These groups, along with the Life Esidimeni Family Committee, fought tirelessly to raise alarms about the closure of the Life Esidimeni facility in Randfontein as early as June 2015. They warned of the devastating consequences of this decision, yet their pleas were ignored. The book painstakingly details the systemic failures that led to this mass tragedy, including failed litigation processes and the sheer disregard for human life by key players in positions of power.

As someone with lived experience of mental illness and who has been involuntarily institutionalised multiple times in South Africa, this tragedy resonates deeply with me. The Life Esidimeni tragedy exposes not just cracks, but wide, gaping chasms in the South African mental health care system. It highlights how easily those who are most vulnerable - those who are silenced by stigma or incapacitated by illness - can be mistreated and ultimately forgotten. It is difficult to move beyond the story of the first life lost, the story of Deborah Phetla, a well-loved daughter found with plastic and brown paper in her stomach after her death. Deborah's suffering is a brutal reminder of how dehumanising the mental healthcare system can be.

This book stands as a testimony to the families and loved ones of those who lost their lives in this tragedy. It honours the emotional and psychological toll that families continue to bear. These individuals were not just numbers; they were loved and cherished by their families. The photographs that fill the pages of this book give back a semblance of dignity to the lives lost. The beauty of these portraits lies in the humanity they capture - a stark contrast to the inhumanity they endured in their final days.

The Life Esidimeni tragedy also illuminates glaring deficiencies in South Africa's mental healthcare policies and legal frameworks. The Mental Health Care Act of 2002 (MHCA) has long been criticised as outdated. Although South Africa ratified the Convention on the Rights of Persons with Disabilities (CRPD) in 2007, there has been little progress in fully integrating these principles into national legislation and practice. The CRPD emphasises the right to health care, freedom from torture, and the right to dignity for persons with disabilities, including those with mental health conditions. This convention aligns with our Constitutional rights, but too often these are simply just words on a page.

This failure is systemic, but it is also deeply personal. It is about the everyday people - families, caregivers, and mental healthcare users - who are desperate for care, but it often ends in tragedy. And it is also about the imbalance of power, where a small group of decision-makers can have such devastating control over the lives of so many. In July 2024, nearly a decade after the tragedy began, Judge Teffo ruled that nine of the deaths were unnatural and attributed the responsibility to key figures such as the former MEC for Health Qedani Mahlangu and Dr Makgabo Manamela. However, for the families, and for those of us who are part of the mental health community, this is not enough. The compensation provided in June 2018 to some families who participated in the arbitration process does not equate to justice. True justice will only be realised when there are criminal convictions and when the entire mental healthcare system is reformed to ensure that this never happens again.

For those of us who have lived through mental illness and who continue to fight for the rights of mental healthcare users, this book is a sombre reminder that we cannot be voiceless. The brokenness of the system is not inevitable. There are people within the system - care workers, nurses, doctors, community workers, civil society, mental health advocates - who do their jobs with care and empathy, despite the challenges that are faced. But without systemic reform, these individual efforts are not enough to protect mental healthcare users from harm.

In its essence, Life Esidimeni: Portraits of Lives Lost is not just a memorial to those who lost their lives, but a manifesto for change. It calls upon every one of us to demand better. It reminds us that mental health care is not a medical issue but in fact a human rights issue.

We owe it to the victims of Life Esidimeni, their families, and future generations of mental healthcare users to ensure that their suffering was not in vain. We must demand the careful implementation of the CRPD, reforms to the MHCA, and a complete overhaul of the current mental healthcare system. Only then can we begin to restore dignity to those who have been stripped of it and ensure that such a tragedy never happens again.

To the authors and all who fought for these patients' rights, you inspire hope that, through unity and dedication, we can create transformative change and protect the dignity and lives of the vulnerable. We are deeply grateful for your courage.

Published: 7 March 2025