Letters To My Weird Sisters

On Autism and Feminism

Joanne Limburg

• Verlag: Atlantic Books
• Jahr: 2021
• ISBN:
  9781838950064
• Thema: Medicina
• Thema: Salute sessuale e sessualità

'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.

Adelheid Bloch

Adelheid Bloch (12 April 1908–25 June 1940) was born in Konstanz in the Baden-Württemberg region of Germany, the daughter of Moritz Bloch and his second wife, Ida. She was named in memory of her father’s first wife, Adele. The Bloch family were prominent members of the Jewish community in Konstanz. When Adelheid was three, she contracted meningitis (or ‘encephalitis’, depending on which version of her life you consult), which left her with permanent brain damage. In June 1927, when she was nineteen years old, she was taken to a psychiatric hospital at Wiesloch, where she lived for the rest of her short life. After the Nazis came to power, the focus of activities at Wiesloch changed, as it did at other facilities of its kind, from care to eugenic research. As a disabled person, Adelheid was now seen as a ‘useless eater’, a burden on the Reich, and a problem to be solved. The solution to the existence of people like Adelheid came with ‘Aktion T4’, a deliberately uninformative label for a programme of systematic mass murder, initially of disabled children, which was rolled out to include disabled adults. On 25 June 1940, Adelheid was taken to the new killing centre at Grafeneck, where she was gassed, and her body cremated. Disabled people were the first group to be subject to this treatment. There is a memorial to Adelheid, a Stolperstein or ‘stumbling stone’, set into the pavement outside what was the Bloch family home. One member of her family, Dr Erich Bloch, did return to Konstanz after the war, where he established a Jewish library. Some other members of the extended family also survived, and moved to Israel. One of their descendants is named as the ‘godfather’ of her Stolperstein.

Letter to Adelheid Bloch

Dear Adelheid

I have a confession to make – I almost didn’t write to you.

When I began trying to figure out where my weird sisters might have lived, the first places that came to mind were institutions: convents, reform schools, workhouses, prisons and, of course, lunatic asylums. So the first place I looked was the asylum nearest to home. I went to the local records office, and had a leaf through the admissions book of what was, in the nineteenth and early twentieth centuries, the Isle of Ely and Borough of Cambridge Asylum. Most entries had only one word in the column marked for diagnosis: ‘mania’ or ‘dementia’, the first meaning, roughly, ‘mood disorder’, and the second, ‘psychosis’. There were occasional notes about how the patients got to their unfortunate state: bereavement, a violent husband and in one case ‘political overexcitement’. I had imagined people were put away forever, but in fact most patients stayed only for a few months. The exceptions, the long-stayers who never got out, were usually distinguished by the presence of another word in the diagnosis column, that word being ‘imbecile’.

The difference was brutally stark: mad people could go home to their families, but imbeciles belonged to the institution. As did ‘idiots’, ‘morons’, the ‘feeble-minded’ and ‘mental defectives’ – as the nineteenth century turned into the twentieth, the terminology changed, but the tone remained: dismissive, detached and clinical. People with these labels – people like you – were not people, but problems for people to solve. The way the problem was framed, and the proposed solutions, changed as the terminology changed, but not in your favour.

I found you in an article by the sociologist Lutz Kaelber, entitled ‘Jewish Children with Disabilities and Nazi “Euthanasia” Crimes’. Naming you as ‘Adelheid B’, he cites your case as an instance of the way in which ‘more radical views toward Jews with disabilities and mental illnesses came to the fore [in Germany] at the same time.’⁵³ Female, mentally ill, disabled, Jewish – four shared boxes ticked. As a Jew brought up in the seventies and eighties, I was given to understand that I had a duty to bear witness to the Holocaust, to remember, to make sure that your memories and names would never be erased as your living bodies and minds had been. You and I have Jewishness in common, and for that reason alone, I would always place us together, I would always acknowledge us as us.

Sometimes I tell people that moving through society as a Jew for fifty years has been the perfect preparation for learning to move through society as a late-diagnosed autistic person: in both cases, you disclose the fact, and then the person you’ve disclosed it to gets to have fun deciding whether you look it or not. In both cases, it comes down to passing, and passing privilege. I don’t always have it. People who’ve grown up among Jews can clock me pretty quickly – although my features are not stereotypical, I share them with a lot of other European Jews; and then there’s my accent, which my non-Jewish husband once described as ‘North London Non-Specific Ethnic’.

The autism’s another matter. I’ve written elsewhere that people often sense something different about me, but they rarely identify the source of the difference, unless I disclose it. If I’m not like the autistic individuals they live with, or work with, or have seen on television, they struggle to see what it is that’s autistic about me. The assumption is, always, that there must be something to see – something that would signal my deficiency. I’m what people insist on calling ‘high-functioning’, which means that I can make my appearance conform to theirs when I have to, I can behave as they expect a woman to behave, I can use spoken language in a way they can understand – I can pass.

You could not. According to your records, you were diagnosed with ‘idiocy’ and your physician described you as ‘terribly difficult and disruptive’. Kaelber speculates that you had ‘a developmental disability – according to a local historian trained as a psychotherapist with access to her records, [Adelheid] may in fact have had autism, which did not exist as a diagnostic category at the time’.⁵⁴ I wrote to Kaelber to ask about his source, and he directed me to the historian Dr Frank Janzowski. Dr Janzowski told me that when you were three, you contracted meningitis (sometimes translated as ‘encephalitis’), which left you brain-damaged. Yes, you presented in a very similar way to the children Leo Kanner would name ‘autistic’ a few years later, but in your case, there was an identifiable organic cause. And it is also worth mentioning that, when you arrived at Wiesloch in the twenties, you were not a child.

Adelheid, it was at this point that I nearly abandoned you. I allowed myself to think for a moment that you fell outside the scope of this project. But then I realized that in judging you to be outside the scope of things, to be too unlike me to be claimed as one of mine, I was guilty of doing what others had done to you. Of being dismissive, detached and clinical, little better than the physician who described you as more like an animal than a person, and noted that, when ill, you showed no signs of feeling pain.

Maybe you did, though – maybe you did, and he just lacked the sensitivity and the imagination to read them. How the hell could he tell what pain you suffered? Nobody can really judge what goes on in another person’s head, nobody can know for sure how much another person understands, what they feel, how joyful or painful or rich their experience of being alive might be. I don’t know for sure whether you can understand this letter, but I’ll do you the courtesy of ‘assuming capacity’, and write to you as one person to another. Even if you cannot understand this letter, it is no less yours – a gift is still a gift, even if you can’t find a use for it. I would never claim to speak for you, but I can, and will, speak to you. And I still owe you an apology, whether you can understand the words or not.

There’s something else important we have in common, besides our Jewishness. I can pass now, but I wasn’t always able to, and, like you, I know what it is to be seen as a problem in need of a solution. When I was growing up, I kept being asked the same two questions, again and again:

What is the matter with you?

What are we going to do with you?

I used to wonder why people kept asking me these questions. They obviously didn’t want or expect me to answer.

What is the matter with you?

You can’t speak or you can’t speak properly.

From what I know of you, I assume that you had little or no speech – that your ‘expressive language skills’, as they are sometimes called, were non-existent or at best very limited. I’m guessing from the use of the word ‘idiocy’ that your difficulty in expressing thoughts in spoken language was taken as evidence of a lack of both language comprehension and of any thoughts worth expressing. People who regard themselves as normal often make these kinds of assumptions about people who struggle with speech, whatever the reason for their struggles might be.

Autism is routinely described as something a person can have ‘mildly’ or ‘severely’. Problems with expressive language are often cited as proof of ‘severity’, and this severity is assumed to include an element of intellectual disability. In this way, the mild/severe distinction is taken to indicate not only a difference in degree but a difference in kind: someone like me – so ‘eloquent’, so ‘articulate’ – can’t possibly ‘suffer’ from the same ‘condition’ as a non-speaker.

But it’s really not as simple as that. For a start, there are quite a few autistic people who can write but not speak, and it is not because they have no thoughts to express, but because, as Daniel McConnell puts it, ‘my mind moves like lightening and my body like a cement truck’;⁵⁵ autistic bodies can be very, very heavy steering, and this can affect the motor planning and physical coordination required for speech, or, in many cases, unassisted typing. And a couple more things to remember: first of all, not all thoughts are made of words; secondly, when you are autistic, and your experiences are so different from most people’s, you are often speaking in translation, even when the language is supposedly your own.

And sometimes you’re just too scared to speak.

When I was eight, and had recently moved from the Infants to the Juniors, it became apparent to my parents that there was something off-kilter about me. It was becoming apparent to the other children too. From time to time, one of my classmates would look at me, head on one side, eyes narrowed, and offer their version of a diagnosis: ‘You have a stammer, don’t you?’ One girl told me, with some excitement and a great deal of pride in her knowledge, that it was a sort of handicap. I can remember where we were standing when she said it, but I can’t remember what my response was. Only that I can’t have been looking her in the face, because my visual memory of the moment is filled entirely with the sky and the playing field and the fence that went all the way around it.

What are we going to do with you?

I was taken to a speech therapist, who noticed, among other things, this habit of not looking people in the face. I have a copy of the letter she sent to the paediatrician. It begins:

Joanne presents as an extremely bright particularly verbally, insightful and shy girl.

[We’ll come back to this – for now, note the word ‘shy’.]

At the first interview she was completely fluent. It was only in the middle of the second session, that Joanne demonstrated hesitancy, initial sound, and syllable repetitions, and very occasionally mild initial sound blocks. She severely lacked eye contact, and on a number of occasions turned her head to one side.

[I still do that sometimes, by the way; it’s not always easy to organize my thoughts and cope with the stimulus of an attentive human face at one and the same time, and clinicians tend to demonstrate higher than average attentiveness in their gaze.]

For a girl of Joanne’s age she is extremely aware in a precise way in which people and situations cause her stammer to develop from a very mild dysfluency to what she considers as a moderately severe dysfluency (that is, whole word repetition).

[The self-consciousness hasn’t gone away either. The surprise for me here is how early it kicked in.]

The dysfluency is very fluctuating. Neither her class teacher, nor her headmaster, with whom I have spoken at some length have ever detected even the mildest stammer.

[One-to-ones with adults – a teacher or a speech therapist – were never the hardest interactions for me. However, things did deteriorate with the headmaster. We’ll come back to that too.]

Joanne’s feelings towards her stammer include embarrassment and anger. Joanne is over-conscious of her speech, in general, and very aware when she makes a ‘slip of the tongue’. She responds by stumbling and the form the stammer takes will then depend on the person(s) or situation.

According to her the situations which cause most dysfluency are where a demand is made or giving an accurate verbal account before a group or reading orally in class.

[It depends on the situation and the group: an audience who’ve come to see me read are genuinely well disposed towards me and I’ve usually had some quiet time beforehand; when I’m in front of a class of restless late adolescents at three in the afternoon, with a dayful of interactions behind me, words will sometimes literally fail me. The wrong ones will come out, or the right ones in the wrong order, or they will cut out altogether. Sometimes I will have a picture of the thing I want to talk about, but not the word, and will have to resort to improvised sign language to prompt myself – unfortunately for me, I seem to look funny when I do that.

This makes teaching difficult – not impossible by any means, but difficult. I’ve learned to cope by keeping whole-class interactions down to a minimum, and always having visual prompts in front of me, so that I can cut down the amo...