In South Africa, the average post-rehabilitation life expectancy for someone who survives a traumatic spinal cord injury is 2 years. That means that, in this country, if you break your neck, and live with a severe disability as a result, chances are you will die within 2 years of your injury. The injury itself won’t kill you, but here’s what might: if you are amongst the majority of South Africans living with a disability, you will be discharged into a world that is designed to exclude you. You will find that you need a staggering amount of money (by South African standards), just to get out of bed every morning, never mind leave the house. And if you can’t get out of bed or leave the house, you won’t be able to earn that staggering amount of money, leaving you dependent on what meagre assistance the state can give you, and what your loved ones can and will do for you. The effects of this may leave you despairing and drained. What may finally kill you, however, will come in the form of what those of us who occupy non-disabled bodies may consider relatively minor. A chesty cough. A bladder infection. A bed sore that becomes a pressure sore.
These are brutal truths to face. I acknowledge that I write about them with the relative remove of someone who has not lived them up close. But I write with some authority, based on what I have learnt in the 10 years I have been partnered with a man living with quadriplegia. We are incredibly privileged and many of the demons I draw above do not bay as loudly at our door. But they still bay. Our relative access and leverage affords us a variety of strategies to make sure my husband lives a fulfilled life and can be the man, father, son, brother, friend and partner he is to his loved ones. This doesn’t mean he is free of the daily indignities of living in world that tells you in countless ways, both minor and major, that it does not want you, it is not for you. He is relatively well-protected against the physical ailments that deal the final blow to many TSCI survivors, but he is by no stretch of the imagination protected from the disabling social and physical world all South Africans living with a disability face.
When the ruling in the Life Esidimeni hearings was handed down, acknowledging the callousness that led to the appalling deaths of over 100 people living with mental disabilities, Western Cape Premier Helen Zille thought it prudent to respond thusly:
She was resoundingly and rightly called out for the tweet. However, the attitude underlying her missive is a commonly held one. The assumption that disabilities are, first and foremost, a personal responsibility is one that runs through our society. Take the State’s paltry disability grant, for example. That’s just what it is – an amount of money, a sum, given to individuals on a monthly basis. What we are effectively saying is that it is up to the disabled to decide how to care for themselves. The best we can do as a society is give them a bit (and I do mean a very little bit) of cash towards that. If you’re relatively lucky and don’t rely on the State, you can expect a tax break for your troubles. That is, cash after the fact of whatever resources you might need to live an enabled life. Our approach is to throw money at the matter and hope for the best. And in many cases, what we mean by ‘the best’ are the families of those living with disabilities. We are banking on the emotional, economic and physical availability of families to fulfil what we effectively feel are personal, individual needs. If you’re relatively lucky, your family is willing and able to do this. If, like the majority of South Africans living with disabilities, you are not, your family cannot avail themselves to you in the ways you need them to. In many of those cases, families then rely on institutional support. Loved ones are committed to the care of places like Life Esidimeni. And they are committed precisely because they are loved. Because their families realise that they cannot fulfil complex needs and cannot meet the myriad demands, and therefore find a place, a community that can. Except that’s not what those places are, as the Life Esidimeni case showed. They’re not communities of care, but merely outcrops of our broader, careless society, masquerading as community. That is how, in 2018, people can starve to death.
And that is how, knowing all we know about these shocking deaths, we can still look to grieving families and demand answers. We don’t really believe that disability is our problem. We believe it is a responsibility, rather than a symptom of a disabling society. Instead of looking at Life Esidimeni as an extreme, but expected outcome of our violent disregard and deep contempt for people with disabilities, we blame the families. We gave them money didn’t we? What did they do to ensure their loved ones didn’t die by drowning in their own blood?
The answer, Premier Zille, and dear reader, is that the families trusted society. Even as they suspected they could not, they had few other options, so they trusted. Through this act of trust, the giving over of loved ones to Life Esidimeni for care, we, as a society, had an opportunity to claim collective responsibility for people living with disabilities. Instead, we continued to shirk responsibility, violently so.
Those who died as a result of the brutal bureaucracy of the Gauteng provincial administration owe us nothing. Their families owe us nothing. What we owe them – what we owe each other – is to claim responsibility for those who are most vulnerable and to take that responsibility seriously.