Letters To My Weird Sisters E-Book

Joanne Limburg

• Herausgeber: Atlantic Books
• Kategorie: Ratgeber
• Sprache: Englisch

Veröffentlichungsjahr: 2021

Beschreibung

'Limburg describes movingly her own struggles as a new mother and the pressure of society's expectations...Through such delicately intertwined experiences, Limburg quietly shouts for change.' Times Literary Supplement It seemed to me that many of the moments when my autism had caused problems, or at least marked me out as different, were those moments when I had come up against some unspoken law about how a girl or a woman should be, and failed to meet it. An autism diagnosis in midlife enabled Joanne Limburg to finally make sense of why her emotional expression, social discomfort and presentation had always marked her as an outsider. Eager to discover other women who had been misunderstood in their time, she writes a series of wide-ranging letters to four 'weird sisters' from history, addressing topics including autistic parenting, social isolation, feminism, the movement for disability rights and the appalling punishments that have been meted out over centuries to those deemed to fall short of the norm. This heartfelt, deeply compassionate and wholly original work humanises women who have so often been dismissed for their differences, and will be celebrated by 'weird sisters' everywhere.

Leseprobe

‘Letters to my Weird Sisters is a beautiful, poignant and urgent piece of writing. Through the medium of missives to her chosen weird women of history, Joanne Limburg goes on an academic, yet deeply personal and profoundly moving exploration of what it means to be an autistic woman struggling to meet society’s ideals of personhood and femininity. The book also tells stories of some of history’s forgotten women, giving them the place they deserve in the ages. Joanne’s writing made me feel heard, understood and seen. Everybody needs to read this book – yesterday, if not sooner!’ Sara Gibbs, author of Drama Queen

‘In these intimate and intelligent letters that carefully unpick what it means to be different – ostensibly autistic, though it becomes clear that any discriminating difference does the same damage – Joanne Limburg addresses a series of lost “mothers”. These are women who’ve been historically misunderstood, slighted, shamed and cast as outsiders. With the exception of Virginia Woolf, you may not recognise her subjects and yet Adelheid Bloch, Frau V and Katharina Kepler spring back to vivid life in her hands, their sufferings a salutary lesson in the dangers of othering people. Limburg trips lightly through difficult material, through mental illness, incarceration and witch hunts, her writing shining everywhere with empathy, humanity and wit.’ Marina Benjamin, author of Insomnia

‘A powerful and deeply personal tribute to the “weird” sisterhood. Limburg seamlessly weaves her own experiences as a “misfit” into the stories of women from history who today might be regarded as autistic. Her bold, unique exploration of autism reflects centuries of prejudice and more recent and shameful care scandals involving autistic people. Limburg forces the reader to reconsider who’s really weird; those whom society perceives as defective, or a society that constrains, alienates and dehumanises people just because they don’t conform to its norms?’ Saba Salman, editor of Made Possible

Also by Joanne Limburg

NONFICTION:

Small Pieces: A Book of Lamentations

The Woman Who Thought Too Much: A Memoir of Obsession and Compulsion

FICTION:

A Want of Kindness: a novel of Queen Anne

POETRY COLLECTIONS:

The Autistic Alice

Paraphernalia

Femenismo

Letters to My Weird Sisters

Joanne Limburg

First published in hardback in Great Britain in 2021 by Atlantic Books, an imprint of Atlantic Books Ltd.

This edition first published in paperback in Great Britain in 2022 by Atlantic Books, an imprint of Atlantic Books Ltd.

Copyright © Joanne Limburg, 2021

The moral right of Joanne Limburg to be identified as the author of this work has been asserted by her in accordance with the Copyright, Designs and Patents Act of 1988.

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior permission of both the copyright owner and the above publisher of this book.

Every effort has been made to trace or contact all copyright-holders. The publishers will be pleased to make good any omissions or rectify any mistakes brought to their attention at the earliest opportunity. Please see ‘A Note on Permissions’ on page 247 for full copyright details.

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A CIP catalogue record for this book is available from the British Library.

Paperback ISBN: 978 1 83895 007 1

Ebook ISBN: 978 1 83895 006 4

Printed in Great Britain

Atlantic Books

An imprint of Atlantic Books Ltd

Ormond House

26–27 Boswell Street

London WC1N 3JZ

www.atlantic-books.co.uk

i.m.

Caron Freeborn

1966–2020

Contents

Foreword: Letter to the Reader

Letter to Virginia Woolf

Letter to Adelheid Bloch

Letter to Frau V

Letter to Katharina Kepler

Afterword: Letter to Caron Freeborn

Appendix

Selected Further Reading

Acknowledgements

A Note on Permissions

Notes

Foreword:

Letter to the Reader, from Uncanny Valley

Dear Reader

You may have heard of Uncanny Valley. It’s the term game designers, animators and animatronic designers use to refer to the uncomfortable feeling you get when you encounter a representation of a human figure that isn’t quite human enough to convince, but is at the same time so very nearly human that the resemblance seems to call the lines between human/not-human and fake/real into question.

For some reason, human beings set a lot of store by the distinction between ourselves and everything else that exists, and it makes us uncomfortable when we can’t locate it clearly. We call that feeling of discomfort – of something’s being subtly, but indescribably ‘off’ – the feeling of uncanniness, from the German Unheimlichkeit, which literally means ‘unhomelike’, unsettled. We prefer a thing to be either familiar or strange, so that we know whether to welcome it or treat it with suspicion. When we’re faced with the strangely familiar, we don’t know how we’re supposed to react.

Freud didn’t formulate the concept of the uncanny – that was the German psychiatrist Ernst Jentsch – but he explored it in some detail in one of his best-known papers, where he defined it as an ‘aesthetic experience’, the subjective impression belonging to the person who encounters the unsettling object.1 You can read work on this experience of uncanniness in all kinds of journals on all kinds of subjects. You’ll probably have come across it, for example, in connection with ghost stories or horror films or photography. We know a lot about how it feels to encounter The Uncanny. We don’t talk so much about how it feels to embody it, but it does happen.

I’m pretty sure that everyone, at some time, has the experience of being uncanny. I’m also fairly sure that, for most people, their experiences are rare, fleeting one-offs: maybe you met a distant relative at a family event and they thought for a moment that they were looking at your parent at the same age; maybe you were drunk or otherwise intoxicated in a way that made other people uneasy around you; maybe you found yourself briefly among strangers who didn’t have a way of reading you; maybe you simply appeared for a moment at a time and in a place where the appearance of a person of your type was entirely unexpected. Think of the look you get from a room full of people when you open a door by mistake, and they’re in the middle of something – a meeting, a seminar, a formal do with speeches – that frozen look that’s a mixture of shock and blankness with a hint of hostility. When you encounter it, you freeze in turn. Your stomach drops. You mutter an apology and close the door. I know that look very well and I don’t even have to stumble into the wrong room to get it. I can elicit it just by walking down the street.

For my particular place and time, there’s nothing obviously other about me. I’m a middle-aged white woman in a majority-white country. I’m not tall and I’m only ordinarily short. I dress like you’d expect a middle-aged straight white cis-woman to dress. I’m on legs rather than wheels, and I can use them without a stick, or cane, or any other kind of mobility aid. I’m not unusually fat or thin. My person and face aren’t remarkable either for their conventional attractiveness or for their distance from it. I don’t have a guide dog or a white stick. I wear glasses, but so do a lot of people. If anything, I’m remarkably nondescript. (If you want more convincing, a journalist once wrote that I was small, slight, bespectacled, nervous-looking and mousy-haired. I am not, nor have I ever been, mousy-haired – I can only attribute this mistake to an overwhelming perception of general mousiness. You see – nondescript.)

I don’t startle people as much as I used to, partly because I’ve learned how to arrange my face for the outside world, and also partly because I’ve reached the age of female invisibility. It still happens sometimes, though, usually when I’m particularly tired or stressed or preoccupied, and it happens like this: I’ll be walking down the street, I’ll catch someone’s eye incidentally, and their facial expression will change, not in a good way. A smile will disappear, a neutral look turn to one of bewilderment or anxiety; if we’ve reached that point when two strangers approach each other on a pavement, and it’s time to do the avoidance dance, they’ll step aside a beat too soon; sometimes, for no reason that I can see, they’ll apologize.

‘Ah,’ you’re thinking, ‘Resting Bitch Face.’ It is that, but it’s more than that, and other people’s problematic reactions to my presence don’t begin and end on the street. All my life, in all kinds of contexts, I’ve watched people sense something other about me, and react accordingly: some people back away as soon as they can, or push me away; some people narrow their eyes and try to figure me out; some read it as vulnerability and become protective; others read it as vulnerability and become predatory; a few people are drawn to it. One of my infant school teachers ordered me to smile; one of my junior school teachers told me ‘not to look like that’. People tell me I look furious when I’m simply trying to concentrate. People start conversations I wasn’t expecting and then tell me not to look so scared. People have told me I’m too fidgety; other people have said that I’m so still it freaks them out. Oh, and apparently I have a ‘distinctive walk’. My voice is too quiet but also too loud. And what am I looking at all the way over there?

I unsettle people. I’m uncanny. Being around me doesn’t always feel like being around a fellow human being, and that discomfort rarely brings out the best in people. If you don’t register someone as a fellow human being, you are less inclined to treat them like one. They’re a threat or a nuisance or an instrument or an object or your work or your responsibility or an interesting spectacle, but not a person. It’s horrible being a not-person – people who know themselves to be people will stand right in front of you, and talk about you in the third person as if you weren’t even there. You’ll try and get their attention and they’ll act like no one spoke. It’s social death.

I’m not claiming that it’s a rare experience, being dehumanized; you don’t have to be uncanny for it to happen. On the contrary, I’m sure most of you will have been on the receiving end of it at some point. As a matter of routine, adults do it to children; men do it to women; bosses do it to subordinates; white people do it to people of colour; abled people do it to disabled people; high status people do it to the people who serve them and clean up after them; medical staff do it to patients; anyone who walks past a homeless person on the street and doesn’t acknowledge them has done it. If you’re a white, middle-class, heterosexual, able-bodied cis-male, it won’t have happened to you so much. If you’re a black, working-class, queer, disabled, trans-female, then I’m aware that it will have happened to you a great deal more than it’s happened to me.

But it has happened to me more than you might expect, and it’s happened mostly because I’m uncanny, or weird, or, since my very late diagnosis, autistic.

At this point, you’ll be expecting a definition of autism, and the usual way of meeting this expectation would be to look it up in a diagnostic manual – the DSM-5, say – or from some other official source: an institute, a research centre, the NHS, the National Autistic Society. I’m not going to do that. First of all, you can very easily do it yourselves, and if you’re interested enough to pick this book up, you probably already have. Secondly, I wouldn’t want to mislead you into thinking that there is any general agreement as to what autism is – there really, really isn’t. Thirdly, this is my account, written under my name, and I’m not going to describe myself in someone else’s terms; that is the very opposite of what I want to do.

What I will try to do instead is to convey my own understanding of autism and, as I tend to think in analogies, I will draw one for you now. I’ll start by asking you to picture an AA road map of Great Britain (if you’re under thirty-five, you might want to picture a Google map instead). This road map corresponds to the brain and nervous system of a non-autistic, or ‘neurotypical’, individual; there might be a few minor variations between individuals, but broadly speaking, most of the population is working with this sort of map. To make an autistic map, you first need to take out all the ‘A’ roads. Replace these with a selection of the other roads: motorways, ‘B’ roads, and the less well-travelled roads usually referred to as ‘unclassified’. Any ‘A’ road could be replaced with any other kind of road, and the proportions will be different for every individual. You might get mostly ‘B’ roads and a handful of extra motorways, in which case you will probably strike people as remarkably talented but at the same time a little off, a little odd. On the other hand, you might lose out on the motorways altogether and end up with a baroque network of narrow, winding unclassifieds, slowing down and complicating your processing to the point where you experience significant difficulties with sensory input, emotional regulation, initiating action and motor planning; you may be unable to use spoken language at all, may also struggle with basic self-care, and will require a high level of support from others.

Most of us will fall somewhere between these two extremes, and no two of us will have the same map. What we have in common is that absence of ‘A’ roads – the standard ways of thinking, feeling, speaking and doing which non-autistic people share and can use to understand each other and navigate the world they’ve built for themselves. A ‘B’ road might be a close enough approximation, and will allow us to ‘pass’ in the world, but never completely, and never without considerable effort, or pain. If we think in terms of the social rather than the medical model of disability, we can see that while the ‘unclassified’ roads may represent real impairments, it is the lack of fit between the individual autistic map and the world of majority A-roaders that makes autistic people disabled. Autistic sociologist Damian Milton identifies this disabling lack of fit as the ‘double empathy problem’, which locates autistic people’s social difficulties not in an inherent deficiency in social intelligence, but in the ‘mutual incomprehension’ which arises when people who think differently from each other try to communicate without adjusting for that difference.

It is this image of the variable map that I call to mind when I want to think about the wider autistic population, and why it might be that I feel so strongly that we are a distinct population, even though we vary so much among ourselves. Despite the variations between us, I find most autistic people easier to understand than most non-autistic people, just as Milton’s theory would predict. At the same time, I would never claim to speak for us all. Quite apart from anything else, autistic people don’t need me to. Ever since Temple Grandin and Donna Williams published the first ‘autiebiographies’ in the late eighties and early nineties, autistic people have been writing and sometimes also speaking for themselves. In the last few years, in the UK alone, we have seen the publication of autobiographies by Laura James, Katherine May, Chris Packham and Tom Cutler; Rhi Lloyd-Williams’s play The Duck; Lana Grant’s From Here to Maternity: Pregnancy and Motherhood on the Autism Spectrum; James McGrath’s Naming Adult Autism: Culture, Science, Identity, a critique of the cultural myth which equates autism with a talent for STEM subjects and a lack of interest or ability in writing; poetry, including work by Kate Fox, Peter Street and the late Caron Freeborn, and my own The Autistic Alice. As I write, an excellent anthology, Stim, has just come out, edited by Lizzie Huxley-Jones, Elle McNicoll’s children’s book A Kind of Spark has been promoted by Waterstones and Dara McAnulty’s Diary of a Young Naturalist has been winning both acclaim and prizes. (I’m sure I’ll have left people out. Apologies to them.)

What I’m trying to get at is that I’m not writing this letter to prove to you that autistic people can write: it’s very well established that we can. Being autistic is not the same as being ‘nonverbal’. That term – ‘nonverbal’ – is so vague as to be misleading. Receptive language skills are not the same as expressive ones (I find it hard to employ both at the same time, which makes conversing with more than one or two other people very difficult for me. Lecturing, appearing at book festivals etc. – please note: not a problem.) Reading is not the same activity as listening. Speaking requires a very different set of skills from writing: there is a sub-group of autistic people who can use spoken language very little or not at all, but can use alternative and augmentative communication (AAC) methods to communicate. Some simply need access to a keyboard; others, who have difficulties with motor planning, require assistance to access AAC technology. Some of the most influential and innovative autistic advocates, such as Amy Sequenzia and the late, much-mourned Mel Baggs, have come out of this sub-group. Sequenzia, along with Elizabeth J. Grace, edited the anthology Typed Words, Loud Voices, which gathers together writing by non-speaking autistic people, alongside work by non-autistic people whose own disabilities make it difficult for them to speak. I would encourage you to read it.

And take care that your reading includes accounts by Black autistic people: Anand Prahlad’s The Secret Life of a Black Aspie would be a good title to start with. You’ll have a very partial picture if you don’t. The classic image of the autistic person is someone like Joe from the BBC drama The ‘A’ Word: school age, male and white. For those of us who are either not male, not white, or neither male nor white, the persistence of this image stands in the way of diagnosis and support. For those of us who went to school in the fifties, sixties, seventies or eighties (or earlier) and did not fit the profile of ‘classic autistic’ with little or no speech and high support needs, no diagnosis existed. I was diagnosed at forty-two: that’s not unusual. For the families of Black, Asian and Minority Ethnic children, early diagnosis remains hard to obtain, partly because of cultural biases in the way that largely white professionals interpret those children’s behaviour. This same cultural bias means that the social consequences of autism, diagnosed or not, can be more serious for BAME children and adults. If I, a white middle-aged woman, behave oddly in public, people may avoid or laugh at me, but they are unlikely to call the police. If I were black and male as well as autistic, on the other hand, I would put myself in danger – real, physical danger – every time I left the house. It’s important to acknowledge this. As the black lesbian feminist Audre Lorde put it, ‘There is no such thing as a single-issue struggle, because we do not live single-issue lives.’2

I’ve taken that quote from Lorde’s talk ‘Learning from the 60s’, in which she reflected back on her life as an activist. It had in many ways proved a frustrating and disappointing time. Lorde had come to realize that, when she moved in feminist circles, her particular concerns and experiences as a black American woman were pushed to the bottom of the agenda; in the male-dominated anti-racist movements, women’s concerns were ignored. Both groups, in fact, were replicating at least some of the structural inequalities of the culture they claimed to want to change: white women decreed what feminism was, and black men decreed what was central to the struggle for civil rights.

This wasn’t a problem only for black women, but, ultimately, for anybody who sought to see the world for what it is and to make it better. What Lorde and other black feminists such as bell hooks, Alice Walker and Toni Morrison realized was that the more dehumanized groups a person belongs to, the more their experience forces them to understand about the way society is structured: what and who it takes for granted, the truths about itself it chooses to ignore, who is doing the truly essential work. They showed how the different strands of inequality and injustice are knotted together into a net that holds us all, and that there’s a limit to what you can accomplish if you focus only on the one string. Over the last few years, Lorde’s writings have become for me what the writer Sara Ahmed terms ‘feminist bricks’: the theoretical and methodological supports on which I’ve come to base my work. Sara Ahmed’s own writings, and especially her book Living a Feminist Life,3 are also feminist bricks for me. Lorde and Ahmed, more than anyone else, have enabled me to see the specificities of my own condition, and to be more aware of its limitations when it comes to understanding the conditions of others. They have also shown me how to think from my own condition as a member of a specific marginalized group – disabled women in general, autistic women in particular – to examine my experience for what it can tell me about how the world really is, and how I might communicate what I have learned. Reader, if you haven’t read Lorde and Ahmed yet, you really must. And everyone should read the paper in which Kimberle Crenshaw first set out the concept of ‘intersectionality’. Originally coined by Crenshaw to enable analysis of the multidimensional nature of discrimination faced by black women, it has come to be the word most commonly used to remind everyone that, where structural inequality is concerned, there are no single-issue problems.4

Before I finish recommending other people’s work, there are a couple more books I should mention, because, like the feminist brick writings, they were books that I needed to read before I could think of writing this one. The first will probably be very well known to you: it’s NeuroTribes by Steve Silberman. NeuroTribes is a detailed and fascinating medical, social and cultural history of autism. In the first chapter, ‘The Wizard of Clapham Common’, Silberman gestures towards autism’s possible pre-history, considering the life, work and character of the eighteenth-century ‘natural philosopher’ Henry Cavendish, and other famous figures such as Paul Dirac. Both Cavendish and Dirac were brilliant scientists who behaved very oddly, and each was ‘a walking riddle to everyone who crossed his path’.5 To be clear, Silberman is not diagnosing these men with autism – you cannot, and you should not, diagnose someone posthumously – but, if you are working on the assumption that the kind of people we now call autistic have always existed, then it is not unreasonable to wonder who these weird or uncanny individuals might have been, what sort of lives they led, and how the worlds they lived in responded to them.

I wanted to know who the weird women were – who were these weird sisters of mine? What sort of lives did they lead? How did the world respond to them? I was interested in the ways that autism – or weirdness, to give it a non-diagnostic term – might intersect with womanhood and with the norms of femininity. Since my diagnosis, I have been able to look back over my life from this new perspective, from this particular intersection, and it seemed to me that many of the moments when my autism had caused problems, or at least marked me out as different, were those moments when I had come up against some unspoken law about how a girl or a woman should be, and failed to meet it. I recently read an interview with the comedian Hannah Gadsby, and some of the experiences she shared were very familiar to me:

Women with autism are a really interesting demographic. Until I had the diagnosis, I thought, Yeah, I’m a butch lesbian. But everything that makes me butch are decisions I made because of sensitivities or logic that have to do with my autism. I don’t wear frills, because if I wear frills I think about it all day. I can’t grow my hair, because if I have my hair around my face I think about it all day. There’s a lot about me that people are like, ‘Ah, look, lesbian,’ and really it’s about me not wanting to think about my physical self so I can just get on with things.6

Women with autism are a varied demographic as well as an interesting one. Unlike Gadsby, I’m straight, and you wouldn’t call me butch. But I’ve also made decisions about my appearance which are based on my autism: I hardly ever wear make-up, because it feels claggy and it smells; I can cope with frills but not lace next to my skin (women’s underwear is a nightmare); I hate jewellery that shines too aggressively, or that moves in any way (charm bracelets make me gag); I don’t wear heels, because I hate that clickety-clackety noise they make. Bangles are out because they roll up and down the arm. Wrap skirts and dresses are out because I can never figure out how to tie them. And I cannot – I WILL not – wear anything with metal buttons. So when I read the interview, I thought: ‘Hello, Weird Sister.’

Autistic women are a minority demographic, and when you’re in a minority, it can get lonely – your people are scarce and hard to find. The internet has helped many of us to find each other, and allowed us to group together, and to begin to discover that collective voice which any group needs if it’s going to be heard. Some of these weird siblings, like Mel Baggs, have always spoken as autistic people; others, like Gadsby, had a public platform before diagnosis and have since used that platform to talk about their autism. Together, we can figure out what it means to be an autistic woman and communicate this to the world. There are two sides to this: on the one hand, we are explaining ourselves to the world; on the other hand, we are showing the world what it looks like to us. Here’s Hannah Gadsby again:

there’s still a lot of anxiety that comes with autism. I can be inadvertently rude, and that worries me. I don’t want to be. That’s why I study people. I know what people are going to do before they’re going to do it… I think autism gets easier in a sense as you get older because you have more information. You’re collecting the data.

At the time of writing, I have collected fifty years’ worth of data about the non-autistic world: its attitudes, its assumptions, its expectations; its unwritten, unspoken rules. I have had to figure out this world and explain it to myself in explicit terms, so that I can navigate it (the ‘A’ roads I don’t have) with the minimum number of accidents. It’s been a matter of bare survival, but it’s been enjoyable too: I like collecting data, finding patterns in it and drawing conclusions from the patterns. I draw reassurance from that, but also real joy.

There’s also much reassurance, and much joy, to be had from locating a weird sister. So it was only natural that, in search of data and sisters, I should go the library and start scanning through books for traces of historical weird women. It’s genealogy, but for my neurotype. I read about witches; I read about writers; I read about nuns, beguines and anchoresses; I read about women who had been shut up in institutions; I read about outcast girls and pathologized mothers. Sometimes I would read myself down a blind alley: anchoresses, for example, turned out not to be weird at all, but more akin to the medieval equivalent of the sort of modern woman who has raised her family and decided to retrain as a counsellor. I realized that the further back I went from my time, and the further away I went from my situation, the greater the chance of misinterpretation and misidentification. In the end, I identified four individuals who seemed to me to typify different aspects of life as a weird woman: Virginia Woolf, Adelheid Bloch, Frau V and Katharina Kepler. It was a very short list, and ultimately a very white and European list, but I hope that someone with a different perspective will be able to build on the work in this book, as I’ve been able to build on Silberman’s work in NeuroTribes, and begin to fill in the many lives I’ve missed. There’s a huge amount of work to do; this book is just one small part of it.

I have to say that I never meant to start this work by writing about Virginia Woolf. I had heard her spoken of as a candidate for weird womanhood, but I ruled her out. She is an exceptional figure, and I didn’t want to write about exceptional figures. There are all kinds of people with a great deal invested in Woolf, and I didn’t care to disturb them. I was aware of another writer, another deceased twentieth-century female writer, whose family had been greatly upset by suggestions that she might have been autistic. I could argue that there was no need for them to be upset, as there is nothing shameful about being autistic, but she was their relative, and they were upset. I would imagine that they were upset on two counts: firstly, because most people see autism as something that is wrong with a person, rather than different about them; secondly, because autism is seen as such a comprehensive explanation of a person that it threatens to reduce all their talent, effort and achievement to the status of a symptom, a kind of fortunate tic. I see things differently, but I know I’m in a minority, so I meant to stay away. But then I read Woolf’s autobiographical writings, about the social discomfort of girlhood, and her lifelong complicated relationship with clothes and grooming, and they resonated so powerfully with me that I felt compelled to give over.

There was another reason why I had intended to avoid exceptional figures. There are plenty of books of feminist heroes, and they have their place, but this was never meant to be one of them. I was less interested in women who chose to be difficult than I was in women who couldn’t help being weird. Weirdness is not the same as conscious rebellion or resistance, though it may come to inform it. I’m not doing that kind of feminism here. I’m also not doing the kind of autism advocacy based on the notion that we bring something special to the world. I don’t want to have to argue that I’m special in order to justify my existence. That’s not autism acceptance. Acceptance isn’t about being celebrated: it’s about being unremarked and unremarkable, the opposite of uncanny.

Exceptional status, like an autism diagnosis, is something that can obscure the ordinary in a person. Woolf had, for her time, very ordinary prejudices: she was a snob, she was racist, she was Anti-Semitic (I have no illusions about what she would have made of me) and she was an advocate of eugenics. She made it clear, in a horrific comment in her diary, that she thought people like my second weird woman, Adelheid Bloch, should be killed. Bloch was a German Jewish woman who had learning disabilities following a bout of childhood meningitis, and who had observable characteristics similar to those in people with autism diagnoses. Her life began in a comfortable household near Lake Constance, and ended in one of the prototype Nazi gas chambers, not because she was Jewish, but because she was disabled, the possessor of what her murderers termed ‘a life unworthy of life’.

When I discovered that Bloch’s difficulties arose as the result of brain damage, I had a moment of hesitation about whether she really belonged in this book, but then I realized that it was my hesitation, and not her precise status, that was causing problems. Remember how, at the beginning of this letter, I talked about human beings’ strange preoccupation with drawing lines between themselves and other groups? We’ll talk about ‘what makes us human’ and say it must be ‘language’ or ‘empathy’ or ‘culture’ or ‘the capacity for thought’ or ‘the need for stories’ – I could go on. The problem is that every single definition leaves some human beings out, and, as I’ve said again and again, when you are dehumanized, left outside the fold of the first person plural, then you are in danger – of social death, and also of the absolute, physical kind. So I kept Bloch with me. And with her, all the women who were non-speaking, who had high support needs, whose lives could not follow the usual prescribed pattern of women’s lives, the sort of women who may now be diagnosed with autism or learning disabilities or both, but the categories don’t matter as much as the women do. Too often a very hard line is drawn between autistic people like me, who are good at exams and IQ tests, and other autistic people who are not. It’s an arbitrary and damaging line. In the second part of this book, I do my best to show how that line came into being, and take an eraser to it.

I’ve talked a great deal about feminist theory and feminist activism, but disability history, theory and activism are every bit as central to the work in this book. Without them, I could not have understood Bloch’s story, or the story of the next woman, Frau V; I certainly could not have understood how their stories related to my own. When I write about erasing that arbitrary line, I am engaged in a ‘dishuman’ project. The concept of the dishuman was formulated by sociologists at the University of Sheffield,7 and, according to the manifesto I have stuck to my wall, it is a concept that ‘unpacks and troubles dominant notions of what it means to be human’, with a view to replacing them with ideas that do not exclude or marginalize disabled people. If you flip to the back of this book, you’ll find the full DisHuman Manifesto as an appendix. Katherine Runswick-Cole, one of the authors of the paper cited here, is the mother of an autistic person. So was Frau V: I came across her in the paper Hans Asperger wrote in Austria in the forties, and which many decades later would be translated into English and inform the creation of a new diagnosis, Asperger’s Syndrome. This diagnosis has been dropped from most manuals and has become very controversial, partly because it draws such a firm line between groups of autistic people, but also because Asperger was working in a child psychiatry clinic in Nazi-occupied Austria. Many of the children who passed through his clinic did not survive the war; how far Asperger colluded in this is a matter of much debate.8 It has been suggested that he stressed the gifts of the children (all boys) in his paper on ‘autistic psychopathy’ as a way of saving them from the verdict of ‘lives unworthy of life’ and the fate that would follow. One of the case studies in this paper concerns one ‘Franz V’. It offers a tantalizing glimpse of his mother, known only as ‘Frau V’, whose demeanour, appearance and habits suggest a very decided weirdness. Through Frau V, I was able to think about autistic mothering – mothering by autistic people – as well as autism mothering – the mothering of autistic people. Asperger, like many who came after him, saw autism as a largely male condition, but this did not stop him – or those who came after him – from pathologizing the mothers of autistic children. Then and now, mothers get blamed for everything. Both autistic mothers and autism mothers are particularly vulnerable to mother-blaming. And it is worth remembering that quite a few mothers belong to both groups.

The last of the four women, Katharina Kepler, who lived in early modern Germany, is also remembered because she was someone’s mother. Her eldest son was the mathematician and astronomer Johannes Kepler, and it fell to him to defend her in a witch trial.9 There is no evidence that Katharina practised witchcraft, but she lived in a time and a place where an accusation of witchcraft was a means of settling a score, and Katharina had an unfortunate habit of rubbing people up the wrong way. She did this by being assertive, forthright and persistent, by preferring rational argument to tears, and by refusing to bestow sympathy on someone just because they asked for it. I claim sisterhood with her on account of her resting bitch face (as described by Kepler), her habit of telling the truth as she saw it, and her failure to meet expectations with regard to eye contact. She reminds me a little of me, and a little of my mother. Even if you do not have a mother like Katharina, you have probably come across someone else who does. In a recent article in the Guardian, Patience Agbabi describes just such a mother:

But who was she? After leaving my father, my brother and me, my mother lived in Nigeria from when I was 10 to 35, rarely visiting the UK. As early as I can remember, my mother struggled to maintain relationships with family, friends and colleagues because, in her words, ‘They say I’m eccentric. And bossy.’ She was inflexible, seeing everything in black and white. Either she fell out with people, or they fell out with her.10

The thing about ‘bossy’ women is they get the work done. There are things in the world that need fixing, and you cannot fix them without pointing out that they are broken; the fact that both the pointing out and the fixing makes comfortable people less comfortable is no reason not to do what you know to be right.11