South Africa celebrates Human Rights Day on 21 March to commemorate the sacrifices that were made during the struggle for democracy. More than two decades into democracy, the country experienced a horrific human rights failure which claimed the lives of some 100 of South Africa's most vulnerable citizens. Prof Gubela Mji of the Centre for Rehabilitation Studies analyses the human rights violations that played out in the Life Esidimeni debacle.
The death of at least 94 former Life Esidimeni mentally ill patients not only flies in the face of the Bill of Rights entrenched in our Constitution, but violates the spirit of ubuntu which characterises the African way of life and several national and international acts, policies and conventions regarding rehabilitation and disability.
The Centre for Rehabilitation Studies (CRS) at the Faculty of Medicine and Health Sciences of Stellenbosch University is joining hands with other disability rights activists and advocates in expressing deep sadness and shock about these events.
The late President Nelson Mandela and other human rights activists emphasise that we shouldn't keep silent in the face of suffering and evil, as this creates fertile ground for such instances to replicate themselves. We can only lay claim to an equitable society once our democracy becomes responsive to the most vulnerable groups.
The outpouring of grief, shock and outrage in response to this tragedy raises questions about whether those who facilitated the planning for the relocation of the patients from Life Esidimeni centres to community care NGOs consulted widely enough and were inclusive in the process of organisational change.
Human dignity cannot be fully valued or respected unless individuals, especially those in a position of power, are in touch with their "humanness". Within an African cosmology and way of life this humanness is located within ubuntu. Ubuntu is a way of being which locates people not as independent individuals striving for self-enhancement (in this case saving money by leaving Esidimeni patients to fend for themselves in hostile environments of NGOs that appear to have not been properly assessed), but as interdependent beings who are part of a collective. This interconnected social system determines how we relate to each other as a community. The concept that "a person is a person through other persons" encapsulates the essence of ubuntu and appears to have been completely disregarded.
The Esidimeni patients where shunted from left to right and the picture emerging from Health Ombudsman Professor Malegapuru Makgoba's investigation is alarming. According to his report 94+ and not 36 mentally ill patients (as initially reported) died between 23 March and 19 December 2016 in Gauteng. Of these 75 died in 5 NGO/hospital complexes and rehabilitation centres. The report further states that the total of 94 should be seen as a provisional number. Chaos characterised the transfer process. The Gauteng Mental Health Marathon Project, as it became known, was executed in a "rush"; in "chaotic" fashion; in an environment with no developed tradition or culture of a primary mental health care community-based service framework and infrastructure. Gross human rights violations occurred.
The obligations, content and intention of the UN Convention on the Rights of Persons with Disabilities (UN General Assembly, 2006) and the Continental Plan of Action for the African Decade of Persons with Disabilities (both of which South Africa has signed), seem to have been disregarded. There is alarming prima facie evidence that the Constitution, the National Health Act and the Mental Health Care Act (2002) were violated and contravened. In some instances the rights of the patients and their families were totally disregarded, including the right to human dignity; to life; to freedom and security of person; to privacy, to protection from an environment that is harmful to health or well-being; to access to quality health care services, sufficient food and water; and to lawful, reasonable and procedurally fair administrative actions.
The fact that the relevant NGOs were poorly resourced, conditions were unsuitable and there was a lack of competence in some areas is closely linked to the observed "higher or excess" deaths of the patients and will remain a reminder of how far South Africa has transgressed from its constitutional obligation to protect its citizens.
The Integrated National Disability Strategy (1997) reminds us all that the only yardstick of our society's respect for human rights, the level of its maturity and its generosity of spirit, is the status accorded to its most vulnerable members – the disabled, the senior citizens and the children.
The CRS is also concerned to hear that some of the individuals met their deaths at rehabilitation centres. The National Rehabilitation Policy (2001) emphasises the need for projects to be supported by principles and concepts of community-based rehabilitation (CBR). CBR is implemented through the combined efforts of persons with disabilities themselves, their families, organisations, communities and relevant governmental and non-governmental health, education, vocational, social and other services. At the core of CBR is the protection of human rights and dignity of persons with disabilities. The policy further emphasises it is not WHAT we do, but HOW we do it. How did 94 deaths occur at the rehabilitation centres and other units to which the patients were transferred? That is the question which these establishments need to ask themselves.
The Primary Health Care (PHC) approach in South Africa advocates appropriate, contextually relevant, patient-centred care. This has not been evident in the manner in which these patients were relocated. The issue of contextualisation becomes especially relevant in the process of decentralisation of mental health institutions. What happened at Esidimeni has demonstrated the failure of contextualisation in the process of decentralisation. At the core of our practices should be the notion that when working with human beings, "borrowed" models must be adapted continuously in order to ensure that we do not compromise on human dignity.
The CRS and the Faculty of Medicine and Health Sciences support the Ombudsman's recommendation that appropriate legal proceedings should be instituted or administrative action taken against the NGOs that were found to have been operating unlawfully and where Esidimeni patients died. We further support the notion that in light of the findings in the report, the national Department of Health must review all 27 NGOs involved in this project. Those that do not meet healthcare standards should be deregistered, closed down and their licenses revoked in compliance with the law.
The Esidimeni patients deserved better.
The staff of the Centre for Rehabilitation Studies
Faculty of Medicine and Health Sciences