File photo: INLSA

Malume is Diepkloof, Soweto’s unsung hero who regularly throws parties for children with severe physical and mental disabilities when he is not spending time at Chris Hani Bara-gwanath Hospital giving “goodies” to children with terminal illnesses.
If there is one person who will get my vote, it is Malume.

In true Malume style, he threw a “bash” for children with cerebral palsy complete with music, balloons and food. Everything about this party blew my mind.

The entertainers and dancers were teenagers with albinism. Most of the party-goers were strapped to wheelchairs, couldn’t talk, didn’t run around and had to be fed by the guests. My charge was Thoko, whose disability wasn’t a huge problem for me, although I battled tears as I raised a spoon to her mouth.

What shook my core was that Thoko couldn’t stop wailing. She cried non-stop. Her minders couldn’t say whether she was in pain or not. I was told she is given a drug once in six months, which calms her down and stops the crying.

When the drug effect starts wearing off, the crying starts.

I felt a great sense of relief when it was time to wheel the party-goers back to their centre, Thoko among them. But for days on end, I wondered what it must be for her mother to listen to the never-ending cries. And what about this drug? Couldn’t she be injected more often? Are authorities trying to save costs and reducing the number of shots she gets?

The Life Esidimeni arbitration hearings have exposed our society for what it is: an uncaring one where people with disabilities are treated as if they are “children of a lesser God”.

From the testimonies it is evident they were left to their own devices.

These are people who couldn’t even say when they were hungry or thirsty. What’s worse they couldn’t say when they were in pain either and probably wailed and nobody cared.

They were deprived of love, food, water and care and they simply perished, all 143 of them.

For the NGOs they were just cash cows and those who colluded to remove them from Life Esidimeni did so for one thing: money.

Unlike the Marikana miners who died putting up a fight, those vulnerable people had no capacity to stand up for themselves.

They died a slow and horrible death. Gauteng Health Department officials didn’t want the truth to be known. Implicated officials had to be forced to come and account to the families, they didn’t do so voluntarily, we must always remember that.

But even then, South Africa didn’t at first respond the way it did when the 32 miners were massacred in Marikana. There was no outrage. Why? Because somehow deep in ourselves we treat people with severe mental and physical disabilities as not really worthy of being. We consider them an aberration.

If our immediate families are not affected, we would rather not know and we pretend they don’t exist.

In fact before the advent of democracy, people with disabilities were kept as a dark secret, locked indoors and never allowed to go out or even sit or play out in the sun.

In the township malicious rumours of one or two families harbouring “a tokoloshe” in their bedroom would spread like wildfire. These were not wild imaginations of naughty kids.

They were humans with severe disabilities hidden from the rest of society because of ignorance and superstition. And more often than not, to protect them because of their vulnerability. Also facilities such as Life Esidimeni didn’t exist.

No empathy was shown for the family who had to live with someone like Thoko.

But that was in our past. Democracy brought us facilities like Life Esidimeni and families were confident enough to allow their loved ones out of their sight. Now this tragedy happened and exposed society and health authorities who still regard those with disabilities as a lesser people. If that is not the case, why did the Life Esidimeni project happen the way it did?

Why were the concerns raised ignored and those patients bundled and strapped onto the back of bakkies as if they were not flesh and blood? Why were there no interventions timeously to avert the loss of lives?

It is not a fallacy to say a nation gets the government it deserves. Meaning we should all shoulder the blame for electing people and then allowing them to treat us like our lives don’t matter.

The Life Esidimeni tragedy has taught us that we should be extremely vigilant and keep up the fight for our human rights and especially for the rights of those most vulnerable among us.

The Sunday Independent