Susan, part one

Susan

__________

It was so long ago, I can’t even remember where the conversation took place, or who was involved. The classroom maybe, at my Catholic high school.

We were learning about the Old Testament, all its arbitrary-seeming rules and regulations. Someone must have questioned, or laughed perhaps. These rules weren’t arbitrary at all, we were told in response: they were important and clever adaptations, necessary for survival. Take the prohibitions on certain foods, for instance. Logic. If Moses had got poisoning from shellfish when he was wandering the desert, he would have been in trouble.

These white folk of the Bible, although they were not white at all, were the farsighted forefathers of scientific thought, that thing that would come to set us apart. I learned this early.

It was different from superstition. That is something other cultures do.

Earlier this week, I made a post starting “I am not Māori, and not a scientist”. (Forty-eight hours on, neither status has changed, to be fair.) I was writing about a Listener letter, penned by seven academics, criticising the teaching of mātauranga Māori in NCEA. Since I posted, other academics have signed a counter letter, in their hundreds.

Almost without exception – the exception being TERFs – people leave thoughtful comments on my blog. This week was no different. One commenter questioned.

I want to be clear, the commenter was neither ill-intentioned nor ill-informed. As best I can tell, he is reasoned, articulate and kind. He certainly knows more about te ao Māori than I do. I’m not having a go at him, and I won’t allow comments that do: I have simply taken up his invitation to think a little further.

The commenter acknowledged the value of certain elements of mātauranga Māori, the extraordinariness of centuries-old navigation expertise. But he criticised other aspects, including traditional ideas about disability – in particular, the idea that children born with a disability are the result of a mākatu.

I don’t know enough about te ao Māori to give any sort of informed view. I can’t, of course, condone any dehumanising belief about disabled people, or anyone at all. I guess I can offer my reaction, my ambivalence and my pain, from my head and my heart and my own culture – about what we call science, and who gets to own it.

A little girl was born in 1955.

She was the second of a family that would swell to five children. I believe that she was loved, deeply, through all the pain that followed; across the hours-long journey from central Otago, where her family lived, to the Christchurch institution where she was interned.

She was born in Dunedin. She was born – and for a moment, I imagine, everything seemed fine. But it was not fine; catastrophically, it wasn’t. She had a vitamin K deficiency. Nowadays, thanks to science, hospital staff know exactly what to do. In 1955, they did not.

The baby girl was only minutes from death, in her small cot on the ward, when the nurse found her. The haemorrhage had damaged her brain as extensively as a brain can be damaged, yet continue to live.

It was the fifties. I don’t know much more about that time than I’ve read in books. Perhaps I am unfair. I imagine grey-haired men in white coats who knew best, about the little girl who could not speak or move.

The men who knew best decreed that the little girl – now something between an embarrassment and an encumbrance – should live in an institution, in Templeton. You must remember, at the time the little girl was born, wartime eugenics was far from a distant memory. The original name of the place she lived was the Templeton Farm Mental Deficiency Colony. It was established under the 1928 Mental Defectives Amendment Act.

We don’t really know the story: no one does.

I want to believe that the adults around her held her, in the white-tiled wards, sang to her and smiled – told her they loved her, at her end, and in the years before.

She was six years old when she died. Six: about number of hours it would have taken for her family to drive to her, if only they’d had a car. Six years old, enclosed for most of those years in the white-tiled walls of an institution.

Six.

The little girl’s mother and father had listened to the men who knew best. A young couple from a small provincial town, it was not their place to argue with the experts. They wanted the best for the little girl.

But the agony of the separation from her child, for all that the men told her they knew best, lodged in the soul of her mother, for forty-one years. The death of her daughter was so profound, it could not be spoken: instead, it ruptured silently the depths of her, her wairua, so that she could not speak about it ever; not for all the crude interventions of old school anti-depressants or stunted small town niceties; not even to the day she died.

My children have an aunt, although they never met her. Nor did their dad: he was born after the death of his own sister. She lived from 1955 to 1962.

We can say, the problem wasn’t science – it was science done imperfectly. We know today that children must be held and loved if they are to thrive. We know their parents, if they are to thrive, must hold their children and love them. Science has shown it, and science is right. It’s just that for centuries before, in every culture that says it takes a village to raise a child, this thing was already known, in every mother’s bones.

If imperfect science was the problem, better science should have fixed it – and no doubt, science has played its part. But the difference was the fight. In the 1970s, disabled people rose up. They were tired. They demanded the fullness of their humanity, all that life has to offer. They were uncompromising. They still fight now.

When science met wisdom, ignited by people power, that’s when the change began. The little girl did not live to see it. Her mother did, with a devastating ambivalence of sweetness and pain.

If Susan were with us today, science would make her life different. The COVID jab would be her greatest hope – but it would be nothing without the will, the passion, the aroha of the team of five million, who know that if Susan is to thrive, then all of us must do our bit.

She is not with us. As I wrote this I realised, I don’t even know where she is buried. Neither did her brother, when I asked.

Science is one kind of human endeavour. Human endeavour is about being human. There are three parts to being human: you f*** it up, you learn, you get better. The first part is inevitable. The second and third are a choice. It is our cultures, our values, that help us choose.

This post is for Susan.

I don’t know sometimes what I believe, about science or anything else. I just hope there is a place somewhere, little one, where your mother holds you.