Voices

If we keep leaving the vulnerable behind, ‘Esidimeni’ will happen again

2017-12-01 00:02

Details of the horrific events that unfolded in the transition of mentally ill people from Life Esidimeni to ill-equipped non-governmental organisations, without government support, emerge as the hearings continue.

We have heard justifications for ill-considered decisions and “passing the buck” from one health official to another. But how could we have allowed this “genocide” to occur under the watch of our own health department? Under our own un-watchfulness?

This year’s South African Child Gauge, following the theme of survive, thrive, transform, has as one of its central themes the inclusion of the most vulnerable children – those with disabilities. It echoes the sustainable development goals principle to “leave no one behind” by making a case for the imperative to focus on those on the margins of society.

The Esidimeni tragedy is an extreme but recent example of those so far left behind and left out of government focus (and civil society concern) that it resulted in their deaths. Many of them died from hunger, starvation and neglect.

What we need to understand is that this tragedy did not happen overnight. It didn’t arise from nowhere as an anomaly in our midst, and worst of all, it is not over but is continuing as long as we ignore the most marginalised. High levels of exclusion isolate individuals and families, removing them from visibility and allowing these unspeakable acts to occur. To change this, we need to invest in more inclusive families and societies from the earliest years.

The call to “leave no one behind” embodies a call to name injustice, apathy and inhumanity. It is a reminder of the need to embrace the right to dignity in our Constitution, and to refuse to turn away from suffering. To have compassion and stand in solidarity with those that bear the brunt of society’s intolerance of difference. To recognise diversity not as a reason to label and treat some as less worthy than others, but as an element of our humanity to celebrate. To begin with the most marginalised signals the hope that, when these too are included, then there is belonging for everyone.

Noting persistent inequities in the provision of health and education to children with disabilities, the South African Child Gauge 2017 enjoins us to increase awareness and visibility of their presence within our midst. We need to adopt an active choice in developing approaches and services that honour diversity. This year’s review of South Africa’s children stresses the importance of welcoming children with disabilities and their families into services geared for all children, and removing attitudinal, structural and other barriers that currently perpetuate their exclusion.

This cannot be a matter of rhetoric alone but requires detailed processes that level the playing grounds for children with disabilities by ensuring that their support needs are dealt with in a way that empowers families to allow their children to thrive. Ensuring that “no one is left behind” requires more than equal services – specific support that is tailored to the individual has to be provided. Integrated services for children and caregivers should be child-centred and not sector-centred, and address systemic barriers that perpetuate fragmentation and lack of coordination. What is required is a two-pronged approach of guaranteeing inclusion within systems provided for all, on the one hand; and providing additional support that enables children with disabilities to thrive, on the other.

Ultimately, inclusion is not about disability, it is about the kind of society we want to live in.

We have failed those persons with disabilities and their families who thought Esidimeni was a haven of safety and a place in which to thrive. We cannot change the past, but we can learn from it. On Sunday, as we affirm and celebrate our differences on the International Day of Persons with Disabilities, let us find the humanity in one another.

Sue Philpott is a post-doctoral candidate at the College of Education, University of KwaZulu-Natal; and Judith McKenzie the head of the disability studies division, University of Cape Town. They contributed to the South African Child Gauge 2017 which was released on Tuesday. The publication is available at www.ci.uct.ac.za.

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December 17 2017