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FEATUREresponse to that boy at the swimming pool was funnelled into a creative process that allowed me to speak on behalf of people like Lou, who lackthe language or comprehension to tell their own stories. So when I was set my first creative writing assignment, I wrote about a girl trying to decipher a phrase that her sister kept repeating indistinctly. Even back then I suspected that misconceptions about learning disability were rife, and hoped that fiction and poetry could help challenge them.To this day, when I mention my sister’s profound and complex learning disabilities, I tend to be offered sympathy on the assumption thather life must be miserable, that my childhood must have been tough. Such assumptions are not surprising given that, as recently as 1983 whenLou was diagnosed with cerebral palsy, the doctor advised my parents to put her in an institution and focus their love on her twin sister, Sarah, and their eldest daughter, me.Decades later, Lou gained an additional diagnosis of autism. But her attitude to life defies so many stereotypes about both conditions. If only that doctor could see us now: Lou leading the way onto the dance floor, throwing back her head in laughter, singing along to the lyrics; Sarah andme following in her wake, looking on – half in apology, half in admiration – as she elbows her way between couples, getting the men to dance with her.Eager to find portrayals of learning disability that explored such joy as well as the inevitable pain, I scoured the library for books about families like mine. In the 1990s there was very little, most of it unremittingly bleak.William Faulkner’s modernist classic The Sound and the Fury at first impressed me with its ingenious first-person narration from the perspective of Benjy, an emotionally complex character with profound learning disabilities. But Benjy is portrayed as a source of resentment – his younger brother refers to him as ‘that damn looney’ and arranges for his castration. And Faulkner himself later disowned the wonderful nuance of the narration, claiming that, ‘You can’t feel anything for Benjy because he doesn’t feel anything’.I never doubted that I would one day turn to this subject so close to my heart, but throughout my 20s, perhaps daunted by this lofty forebearand keenly aware that I was in the early days of studying my craft, I wrote about other things. When I returned to the subject in my 30s, I began to feel uneasy about my early notions of speaking up on behalf of someone else – ‘Nothing AboutUs Without Us’ had become the slogan of the disability rights movement. Yet I still believed that the stories of those most ignored by history should be told.So I held back, my fictional voice stifled by ethical questions. Did I have the right to write about people like my sister, whose difficultiesGIVING VOICEEmma Claire Sweeney on the challenge of writing from the viewpoint of someone who can’t speak for herselfEMMA CLAIRE SWEENEY is the author of Owl Song at Dawn (Legend). Her next book A Secret Sisterhood: the hidden friendships of Austen, Eliot, Brontë and Woolf (Aurum) is co-written with Emily Midorikawa, with whomshe runs SomethingRhymed.com, a site that celebratesfemale literaryfriendship.Some of my most prominent memories of schooldays relate to my sister, Lou, even though she attended a special schoolon the other side of Birkenhead. Aftera swimming lesson, for example, a boy referred to her as a ‘spaz’. I still remember my sudden strength as I pinned him against the wall, seeing it as my role to speak up on her behalf.Soon after this I complained to my English teacher Mrs Nuttall about the use of the term ‘idiot’ in Nina Bawden’s Carrie’s War. She responded by asking the class to debate the subject. In doing so, she legitimised my fierce (and, in hindsight, somewhat misplaced) sense of injustice at the inadequacy of literary representations of learning disability.With the help of Mrs Nuttall, my angry36 Mar/Apr/May 2017 mslexiaPHOTO: PATRIZIA TILLY / SHUTTERSTOCK


































































































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