I have just finished working on a novel called ‘The Matchbox Girl’ which is a fictional account of the life of the real Dr Asperger who worked in the pioneering Curative Education Ward at the Vienna Children’s Hospital in the 1930s and 1940s. The story is told in the first-person voice of a fictional young woman named Adelheid Brunner who is a patient at the Clinic.
I started to write the novel in 2018, and I always knew it would be challenging. In particular, I worried about finding the right voice for Adelheid. This question became especially troubling when lockdown arrived because writers became subject to vicious online attacks for allegedly representing certain groups in insensitive ways.
While I do not condone such attacks, I can understand the frustrations which motivate them. The publishing industry does exclude many groups and, even when trying to promote more diverse stories, it often falls into tokenism and commodification. How could I avoid these pitfalls while also maintaining the nuance essential to a good novel?
I had been attracted to writing about Dr Asperger due to a long-term interest in ‘autism’ but still I felt uncertain. I turned to a writer friend who told me to look at the list of the symptoms of ‘autism’ and ensure my character displayed all the behaviours mentioned. I followed my friend’s advice, but the process felt formulaic and the writing was dull.
That conversation did, however, push me to think deeply about two concepts which are central to the criticisms being made of writers: ‘representation’ and ‘identity.’ At its most basic, the word ‘represent’ means to ‘present again’ which is what novelists do. Recently, the types of different people being ‘re-presented’ on the page has widened and this can only be good.
However, the word ‘represent’ also means ‘to speak for someone else’. This wider meaning is more problematic: who is allowed to ‘represent’ a group? Is there really a ‘right way’ for a group to be represented? Might this approach not lead to stereotyping – and merely exchange one type of exclusion for another? Are any of us really defined by our ‘group’?
It seemed to me that no one person can claim to represent another person unless they have been mandated to do so. Also, leaving the politics aside, I knew that ‘representation’ (in the sense of merely speaking for a group) is likely to result in thin fiction. The novel should not be about social engineering but about the particulars of individuals and their situations.
Equally problematic is the word ‘identity’. In real life, of course, having a defined identity can be reassuring. But novelists work with character, not identity. The important difference being that character is fluid and malleable whereas identity can be seen as immutable. Novels (and indeed most stories) are about how character changes under pressure.
All this thinking was helpful – but still I was stuck with the problem of Adelheid. As often happens, the solution was provided from within the creative process itself. I know this sounds highly fanciful, but it was as though Dr Georg Frankl (who worked with Dr Asperger) turned up in my office, sat down and explained to me what I needed to do.
His point was that I was writing about the staff of the Curative Education Ward and they did not believe in diagnosis. At the time, this approach was radical and the subject of wide-spread interest not just in Vienna but across the world. Much of our knowledge of the Ward comes from a paper written by an American who was sent to assess this work.
Now the ghost of Dr Frankl was asking why I was trying to shoe-horn a fictional young woman into a diagnosis which did not even exist at that time. The Curative Education Ward believed that each child is absolutely unique. Their work simply involved deep and compassionate observation of personality. Maybe I should try the same approach?
A light clicked on. It was all so obvious. The spectral Dr Frankl was only suggesting that I should get back to what I always do – which is to research thoroughly but then, importantly, lay the research aside and work from deep within the character, understanding their history and their hopes, their contradictions and their ability to change and surprise.
This new approach not only felt creatively energising, it was also historically accurate. It is a common misconception that the staff of the Curative Education Ward were supporting children who might now be diagnosed with ‘ASD’. In reality, best estimates suggest that maybe 3–5% of the children in the Ward in the 1930s might now be diagnosed with ‘ASD’.
Of course, researchers can only make their assessment on the basis of case notes, not diagnoses. The staff of the Ward were interested in finding the right educational approach for each child and for identifying a role in life which might suit the child. They took as their guide the gloriously idealistic words of Erwin Lazar. ‘What gift is the child offering us?’
From the earliest days of my research, my instincts had told me that this question of diagnosis (or the rejection of it) was central to the novel. But I am not a person with any scientific or medical training, and I thought I might be the only person interested in these issues. Imagine then my delight when, a couple of years ago, I found Mad in the UK.
From this website, I was able to find books, podcasts and blogs which revealed to me that my apparently obscure question is now recognised as having immediate contemporary relevance. It was exciting to realise that novelists and scientists, although working in such different ways, can arrive at the same place.
Of course, my readers may well be less interested in questions of diagnosis and more interested in Dr Asperger’s history of Nazi collaboration. It was important to me that his crimes are fully explored in the novel. However, if our revulsion leads us to ignore other aspects of the Curative Education Ward then we lose much that remains of interest.
In particular, the supposedly minor characters in this story are, in fact, more interesting than the eponymous doctor himself. These forgotten colleagues were soon tugging at my sleeve, asking to have their stories told. Dr Georg Frankl, Anni Weiss-Frankl, Sister Viktorine Zak and Dr Josef Feldner were all key to the innovative work of the Curative Education Ward.
Georg Frankl (who probably should be credited with the discovery of autism) and Anni-Weiss Frankl, whose work was also crucial, were members of the Jewish community and had to flee Vienna. Although initially their ideas were well received in America, their approach was soon laid aside in favour of the ghastly ‘refrigerator mother’ theory.
Sister Viktorine was described by Dr Asperger as ‘a genius’ but information about her is scarce because she was a nurse. Detailed records were kept in relation to doctors but not nurses. As for Dr Josef Feldner, you need to read my novel if only to enjoy his extraordinarily contradictory nature and his brave, if highly eccentric, approach to opposing the Nazis.
For all these people one question was particularly important: where does the line fall between disease and difference? In the context of the 1930s this question was truly radical. Sadly, that debate was buried in the ruins of World War II but it is now rising from the ashes again and so it is important to understand the context in which it was first asked.
I hope my novel will contribute to an honest debate about ‘autism’ research in the 1930s and 40s. Adelheid tells us, in her own inimitable way, how these brave pioneers held true to their ideas and values, even as the net of fascism closed around them. Of course, an historical novel is always a lens through which we look at our own times.
The Matchbox Girl available from Bloomsbury Publishers
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Mad in the UK hosts blogs by a diverse group of writers. The opinions expressed are the writers’ own.