Tinyletter 19: Forget usefulness. Being human is enough.


When I was a little girl, my gran used to take me to see my great aunt Betty once a week. I loved those visits: her house was like a time capsule of the 1930s, and Betty had a certain wicked glint in her eye that made everything seem like an adventure. But best of all, I got to sit with her son, Colin.

Colin had been born with what was once called ‘water on the brain’, and Betty had carefully tended to him in that house since she brought him home, having been told he couldn’t possibly survive to adulthood. Well, he did, and grew up to be a wonderful, giggling mountain of a man. He was confined mainly to one chair in the living room, with his Dansette player next to him, and he would alternate between playing old big band records, chewing his knuckles and demanding ‘plain chips’. He always knew my name (‘K! K!’) and had never got out of the habit of calling my mother ‘fat Sue’ (a relic of her childhood), and then cackling at her ruffled feathers. Betty’s care of Colin was legendary: his white hair was always neatly clipped, he was amply fed and, possibly as a result, his clothes were made especially for him. He was never hidden away, or resented. He was adored.

I’ve told this story many times before, but I’m telling it again because, over the last couple of weeks, I’ve been watching closely as the debate rages around a book called ‘To Siri With Love’. It’s a memoir written by Judith Newman, the mother of an autistic teenage boy, and, amongst other things, she wonders whether he’s capable of thought, discusses his most intimate habits (openly acknowledging that it’s without his consent) and discloses that she’s retained Medical Power of Attorney so that she can possibly sterilise him when he turns 18.

I’m not going to bother reviewing this book – others have already done a great job. But I will say this: when people start discussing eugenics in the same breath as autism, we must become very, very concerned indeed, because this isn’t exactly a new idea. In Nazi Germany, autistic children were put down like dogs in hospital wards, and their ‘mentally feeble’ adult counterparts were sent to die in concentration camps*. This threat of sterilisation is not a joke: it’s a gesture towards obliterating a set of traits that are divergent from a very narrowly-defined range of normal.

And yet check the celebrity endorsements of this book (from people like Nigella Lawson and Jon Stewart who should know better): ‘moving’ they say; ‘heartwarming’. It’s like they see an entirely different text to me. Or rather, a different subtext, because I see a child being dehumanised and humiliated. But for so many people, still, autism is otherness, blankness, and strangeness. It’s defined, for them, by the autistic person being weird. It makes them uncomfortable, and that’s all that matters.

It astonishes me that Judith Newman can spend so many years raising an autistic child, and still not fully see his humanity. But it astonishes me far less that some sectors of the public have so rapturously received her book, because it reflects the version of autism that we’re fed over and over again: strange, mechanical boys, with no emotion or empathy. This kind of myth is only perpetuated by common consent. Could it be that society prefers this version of autism, because it allows them to imagine human automata, devoid of any of the soft feelings they find so admirable in themselves? Could we be inventing a convenient straw dog that allows us to praise the contrasting depths of our own profound feeling?

I can only hope that more diverse autistic voices begin to break through, and to tell their own stories. I can’t wait to be a part of that next year. But for that to have any effect, everyone – even those who think they know all about autism – needs to be willing to listen, and to hear something new.

So, apologies for a long letter today, and to repeat a story I know I’ve shared before. But Colin and Betty are a touchstone for me; they are where my values were formed, and where my family showed me that we love everyone equally, regardless of any brutal reckoning of worth or usefulness. I initially thought about arguing in this letter that autistic people are far more valuable to society that people like Judith Newman believe; that society would collapse pretty quickly without our contribution to the gene pool. But I now realise I want to say something different. Societies should be judged by their care of the most vulnerable, and their ability to respect people who can’t take care of themselves. It doesn’t matter what you can do for society. It doesn’t matter whether you’re useful. It only matters that you are a human being. That is more than enough.

See you soon,

*See Steve Silberman’s Neurotribes or Donvan & Zucker’s In A Different Key. 

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