Ironically, Esidimeni means "place of dignity".
It now also refers to the care disaster in which people continue to die (143 at last count) and go missing after being transferred from Life Esidimeni into the care of NGOs.
Esidimeni is not only a medical maladministration scandal. It is a story about the sociopolitical abuse of people who only matter once they die.
Patients are not dead because they were mentally ill or simply medically mismanaged. They died because we are careless.
We do not care enough to be clear about the difference between people with a mental or psychiatric illness and people with an intellectual disability (PWID).
Countless Esidimenis are happening right now to people who are still alive, but the extent of neglectful and abusive care will only come to light again once they also die of starvation, dehydration, cold and infection.
It also says much about our nation.We profess to know about discrimination and resultant inequality, yet the PWID at the centre of the Esidimeni tragedy are of the single most disenfranchised and oppressed group in our society.
Despite the current national "Esidimeni deaths" discourse, it is not widely understood that at least half of the deceased lived with severe to profound intellectual disability (ID).
Most adults with ID in South Africa are treated like children. This disabling care practice translates into undignified and abusive treatment.
To justify giving NGOs for children licences to take adults, Gauteng's suspended head of mental health services, Dr Makgabo Manamela, repeated that "mentally ill adult patients have the mind of a child, so they could be classified as children".
Infantilising adults with ID is incredibly ironic because in South Africa they do not enjoy protections similar to children.
No law similar to the Children's Act intervenes on behalf of vulnerable adults at risk of abuse, neglect and death.
Esidimeni has been measured in deaths from the start, which is illogical. If the problem is only as large as the number of deaths, then there is no tragedy if one survives unthinkable abuse and neglect.If people died due to inhumane care, be sure of two things: 143 people suffered until they died, and many more still endure horrific trauma. It reflects South Africa's dehumanisation of PWID.
The NGOs are tasked with intellectually disabled patients' complex care and support needs in the absence of sufficient budgets.
The world over, dependency carers should be paid and trained better; we cannot create the perception that selfless carers are accepting the needs burdens of PWID out of love.
We are in a perpetual care crisis. The current tragedy is an outcome of sweeping, structurally embedded social injustices that will mark us in history if we continue to ignore them.
Rights violations against PWID are not going to stop after one arbitration. For lives of PWID to matter more than death, attitudinal changes must happen:
Specialist residential care is not inexpensive, but provides a service that the state is unable or unwilling to fulfil. The rapid withdrawal of support for PWID from such care is not to be repeated.
South African lawmakers should educate themselves on what "intellectual disabilities" actually mean, as gazetted.The dualist legal system that incorporates into domestic laws the United Nations Convention of the Rights of Persons with Disabilities, which we signed 10 years ago, must be actioned.
A Vulnerable Adults Act must be passed, legally obliging the state to perform universal safeguarding of adults with ID.
Well-regulated community-care requirements must be collaboratively introduced by the state, in consultation with self-advocates, to remedy the lack of public residential-care facilities for people with severe and profound ID and uphold the constitutional right PWID have to life.
Designated ID care facilities must be built for purpose. Care staff must be up-skilled.
Service initiatives must be investigated and international policies and guidelines on good clinical practice and organisational design adopted.
Justice Dikgang Moseneke should ensure the implementation of the draft South African policy framework for the provision of quality education and support for children with severe to profound intellectual disability.
The treatment of any PWID is integrated throughout the public healthcare system.
The remuneration and training of carers, nurses and other members of multidisciplinary teams must be overhauled and specialised.
Appropriate sociopolitical inclusion of PWID and their families should begin at birth, followed by lifelong monitoring...