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meant she might not understand that I had written about someone with similarly severe and complex learning disabilities? How could I be sure I’d achieved authenticity if the people I was writing about could not answer back?Tentatively, I began to write my début novel, Owl Song at Dawn, about fiercely intelligent octogenarian Maeve who has spent a lifetime trying to understand her exuberant twin Edie, who has severe communication disabilities. Once again I searched for books about families like mine.By now The Curious Incident of the Dog in the Night- Time had become a bestseller, and though it had increased awareness of autism, it embodied certain stereotypes. My sister is autistic, but doesn’t have savant syndrome; nor does she hate to be touched. She is affectionate and sociable, and elicits such qualities in others. I wanted to find more nuanced portrayals of characters with communication disabilities.I found one in Grace Williams Says It Loud by Emma Henderson, whose own sister was institutionalised in 1957. Full of passion and verve, the novel is alove story set in a mental asylum that sweeps away stereotypes of disability. It is an experimentalyet immensely readable book; the eponymous heroine utters sentences of only two syllables,yet somehow conveys the richness of her life. Referring to the ethical minefield of drafting such a novel, Henderson says she navigated primarily through ‘faith that because I was doing what I was doing for the right reasons, what I was doing was therefore ethically sound’.Jill Dawson, author of the ambitious and complex novel Wild Boy, inspired by the real-life story of the 18th Century wild boy of Aveyron,took a rather different approach. In her first draft she did not include the boy’s point of view atall, a decision challenged by a friend working in disability rights. At first she defended that decision – ‘he’s mute, he thinks in pictures, not language’– but on reflection, she admits that she hesitated because she feared she couldn’t do it. But alive to the irony that ‘Wild Boy is about the limits of our imagination and empathy’, ultimately she knew she ‘had to be brave and give it a go’.While Henderson based her depiction of Grace on the contrast between her two-word utterances and the complex syntax of her thoughts, Dawson’s strategy involved flashes of narrative based on sensory responses: ‘things I felt sure Victor would notice, even if he didn’t have words for them’. The process ‘brought me closer to Victor. I feel the book was transformed because of it’.Both novelists agree that writing from the perspective of someone who cannot speakfor themselves poses a great challenge. But is that qualitatively different from writing about any character whose life experiences differ significantly from one’s own? If Dawson could write from the point of view of a hanged woman,a seahorse and Patricia Highsmith, why should a boy with mutism (and perhaps autism) be taboo? Presumptuous? Perhaps. But unethical? No.Like Dawson, I read many books by authors with autism to gain insight. Naoki Higashida, for instance, finds conversation almost impossibleand writes by pointing to letters on a grid.Despite the Herculean effort involved in writing his memoir The Reason I Jump, it reads effortlessly, and challenges the assumption that people with autism lack empathy, humour or imagination. My sister does not have Higashida’s access to language. Nonetheless, his insights into his communication issues offered me a strategy for portraying someone who, unlike him, could not write their own story.When I was awarded an Arts Council England residency at Sunnyside Rural Trust to workwith adults with learning disabilities, I beganto see an even clearer way ahead. Listening tothe participants, I realised I was hearing poetry: idiosyncratic turns of phrase (‘sometimes my brain just slurs’) and synaesthetic imagery (‘music that reminds me of snowflakes’). It was a kind of poetry I found half-familiar, because it shared some of the qualities of my sister’s language.I ended up collaborating with the participants to write poems using their words, descriptionsof their body language, and accounts of their experiences. Through repetition and careful placement, even a narrow range of phrases could take on diverse meaning. By listening with the heart, readers might feel they had understood something expressed through fracture and lacunae as well as through coherence.The poets at Sunnyside helped me find the voice I was struggling for in my novel. I began transcribing everything my sister said: her made- up phrases, lyrics from her favourite Irish folk songs, lines from the rhymes she recites by heart, questions she repeats on loop: ‘What’s your name? My name’s Louise Katherine Sweeney. Where’s Sarah? Sarah’s in Leeds. Where’s Seth? My nephew. Seth’s laughing at me! That’s not funny. What noise does a cow make? Moooo. Who do you love the best, Mum or Dad? I like owls. Twit-twoo, I love you true. More than words can say. Tiger, tiger burning bright, in the forest of the night. Night, night, sleep tight’.In my revised novel I have attempted to capture something of Lou’s language in the voice of Edie, adapting it for a character who was born in a different time and place, and whose life experiences differ radically from Lou’s.The redrafting process took me closer to an appreciation of the kinds of stories that Lou is already expressing through her movements and melodic turns of phrase. I no longer feel compelled to speak up on behalf of people with profound communication disabilities, instead I attempt to narrate with them. ■How could I be sure I’d achieved authenticity if the people I wrote about could not answer back?it was a poetryI found half- familiar, because it shared some of the qualities of my sister’s languageTRY THIS► List prevalent stereotypes about people with the typeof communication/learning disability you want to write about. Consider whetherand how your characters, settings, plot, narrative choices, challenge these stereotypes.► Seek experience in person by listening to the kinds of people you are writing about.► Seek insider accountson the page by readingbooks by people with milder communication disabilities. Be alert to anything that overturns your own assumptions.► Identify problematic previous literary representations as well as examples of good practice, actively avoiding the pitfalls and gleaning tips from those you admire.mslexia Mar/Apr/May 2017 37


































































































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