The shocking events that led to the deaths at Life Esidimeni calls for an investigation not only into the circumstances and individuals that allowed such a tragedy to happen, but also a broader conversation of the societal ills that have cultivated an attitude of “second class citizenry” for mentally ill individuals.
The Life Esidimeni saga has been the manifestation of a deep and festering social problem in South Africa. When 141 people died over a period of 9 months after the Gauteng Provincial Health Department decided to end its contract with the Life Healthcare Esidimeni group, the outcry came from all sectors of South African society. And while the quality of the conversation about this very important issue has been varied, for me it highlighted the lack of conversation around the treatment of persons with mental illness and physical disabilities in society at large.
People with mental and physical disabilities are treated as subhuman. This is because society, in general, has a tendency of defining people based on their usefulness. Usefulness is defined along the lines of ability to work and need minimum assistance. It is for this reason that even the elderly are treated appallingly; they too are seen to be unable to offer society anything anymore.
In my own pastoral engagements, I have seen first-hand how persons with disabilities are treated domestically. Some families hide their own relatives, locking them up indoors so that no one can know of their existence. There is a silent wish in some of them that these members of their families would be better-off dead.
I remember being told a story by the niece of a woman that I frequently took communion to. Her aunt was put in a care home at a very young age; she was deaf and didn’t speak. After her aunt’s siblings died, this niece took to visiting her aunt often. To her shock she discovered that her aunt was far more able than it was previously thought. She made the decision to take her aunt out of the care centre – somewhere she had been for more than 40 years.
Many families, out of no fault of their own, are faced with making such decisions because they just do not know how to take care of people with special needs. There is no support for these families. For this reason, they feel that the best place for to send a person with special needs is a care home. Sometimes this decision is done without even assessing how complex or deep the needs of the particular person.
Churches and many social places do not consider adequately those with mental and physical difficulties. Our pastoral initiatives could be better and far-reaching if they also considered persons with special needs. The public space has been made to belong exclusively to those who consider themselves normal. Public transport and public venues are not easily accessible and usable for persons with physical difficulties.
The former deputy chief justice, Dikgang Moseneke, who is head of the Esidimeni enquiry, queried those running care centres about the frequency of the visits by family members. It would seem, although not in all cases, that those who are mentally and physically challenged are dumped at these care centres and never visited again. By mid-October 2017 there were still 59 patients who were discharged from Life Esidimeni that were still unaccounted for. There are even patients who died that have not been identified and their families have not been traced. It can be summed that even though some families could not care about their relatives in these centres, they should be moved to enquire upon seeing and hearing of this tragic saga that has taken over national discourse. Do they simply not care, much like society seems to have a certain apathy?
What informed the impunity by which the MEC of health in Gauteng and the NGOs treatment of these patients is the way society has always treated physically and mentally challenged persons. They knew very well that very few people would notice or even care about whether these people are moved or discharged. The Life Esidimeni investigations should begin with a conversation about the primacy of human dignity by virtue of being alive and not by virtue of being socially useful. It should also reevaluate the question of support for families with physical and mental difficulties so that they do not feel like there is absolutely nothing they can do but to leave their loved ones to the care of institutions. SA.