Esidimeni means “place of dignity” in Zulu. It was the name of a large psychiatric complex in South Africa’s Gauteng province where more than 2,000 people with psychosocial disabilities lived, largely isolated from society, some for more than 20 years.
But in October 2015, the Gauteng government terminated its contract with Esidimeni, citing financial reasons and the importance of deinstitutionalizing people with disabilities.
The announcement sparked an outcry among families and disability rights advocates: while they supported moving people out of institutions and into communities, they worried that the province lacked alternative care options.
Despite the protests, the provincial Department of Health proceeded to close the complex. Since May 2016, about 1,300 patients were transferred to smaller institutions while others were discharged – sometimes without their families being notified.
Between May and October this year, 37 patients died in institutions to which they were transferred from Esidimeni, according to media reports and Esidimeni itself. Some officials, believe the real death toll is closer to 60.
The provincial government has launched an internal investigation, but has yet to reveal why the patients died. Families claim that the new facilities did not provide adequate standards of care.
Local organisations for people with psychosocial disabilities, like Ubuntu Centre, have been pushing the government to release the names of those who died and the whereabouts of the others. They have also asked that December 3, the International Day of Persons with Disabilities, should be used to commemorate the victims.
Ending the placement of people with disabilities in institutions is a commendable aim, and in line with the UN Convention on the Rights of Persons with Disabilities, which this month marks its tenth anniversary. As Human Rights Watch has found, people abandoned to institutions may be forced to take medication, strapped to beds or even chained to trees, and stripped of their equal rights. Moving people with disabilities to community-based living is infinitely preferable and is what the treaty requires. But the process should be consultative and well-thought out.
The Gauteng government should now prevent further harm by monitoring conditions in facilities to which patients were moved, and completing its investigation into Esidimeni. And with more institutions set to close, South Africa should learn lessons from Esidimeni: that the road to deinstitutionalisation requires robust community-based services, with people with disabilities and their families involved at every step.
Because only if lessons are learned can true “dignity” for Esidimeni’s residents be restored.
