KATE SIDLEY: Lay off the families of the Life Esidimeni victims
'That the rights and dignity of these patients are unrelated to how well or poorly their families supported them'
Throughout the Life Esidimeni hearings, commentators on social media have popped up to imply that the families of the victims were somehow to blame for this tragic situation, or at least complicit. They were negligent. They didn’t pay enough attention. They didn’t make enough of a fuss, early enough. Most recently, Helen Zille’s controversial Tweet asked: “What did they do, before these tragic deaths, to raise the alarm about their loved ones starving + living in profound neglect?”
This sort of questioning seems to ignore both the facts - that some families had been to the health department about the move since before the move in 2015 - and the families’ heart-rending testimony about their pain and loss. It seems a uniquely mean-spirited kind of victim-shaming.
But aside from that, what exactly is the point being made?
It seems entirely obvious, but let’s say it anyway, that the rights and dignity of these patients are unrelated to how well or poorly their families supported them. Implicit in these questions seems to be the assumption that these people do not have rights or value of their own - that they are only precious, or worthy of care and respect, in so far as some family member might love or fight for them. If anything, the opposite should be true.
A patient who is entirely unsupported, with no one to protect her or insist on her rights, is doubly vulnerable, and it is even more crucial that she is protected and cared for. The whole point of the social safety net is that it is there for people who are not able to take care of themselves. This system does not and should not rely on family members making sure that vulnerable people are not starved and neglected by the very people charged with their care. This is not to say that families and communities have no role to play, of course they do, but they are not responsible for ensuring that the system runs as it should.
This shaming of families seems like a failure of imagination and compassion. Anyone who has a beloved family member in a long term facility like Life Esidimeni has already been to hell and back, of that we can be sure.There’s been a lifetime of worry, looking for diagnoses, trying these meds or those. They’ve felt the pain of recognising that a treasured child is never going to be able to cope and thrive in the world. Or that their father is not able to be the father they need and hope for. Finding a facility for such a family member is a huge relief, but often comes with its own guilt at not taking care of them at home (there is still a lot of stigma around this). The emotional impact is immense.
And then there are the practical demands. I have a family member with special needs, who lives in a pleasant and caring residential facility, for which I am grateful every day. My brother and I are responsible for her - we drive an hour to visit, or to fetch her for weekends, we buy what she needs, and take her to medical specialists when necessary. Unlike many in this situation, I have a car, and flexible working hours, and enough money and a supportive family. Still, this is a far from negligible emotional and practical commitment. It’s time-consuming and demanding, and sometimes saddening and often lonely.
Anyone with a loved one with a need that requires them to be in any kind of special facility will experience a painful and complex mix of emotions, often including relief and guilt, worry and resentment, love and loss and regret. The Life Esidimeni families will have experienced this for many difficult years, and then they have suffered the traumatic loss of their family members in the most horrific circumstances.
These families deserve our compassion and support, not our shaming. If you can’t see that, it’s you who should be ashamed.