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Narratives of disability and illness—especially from a non-Eurocentric perspective—are thin on the ground, especially if all is not happily ever after.
As an Arab Muslim woman writer, I often find myself having to consider ways that readers perceive my work. Many times, I am asked questions about my characters’ (and my own) cultural and religious beliefs. Many times, I have to explain that Islam does not have to feature in my fiction and narrative non-fiction. Muslim authors face the burden of having to challenge Islamophobia and also represent an entire nation. Muslim women, too, are doubly marginalised as authors, and often struggle to write anything outside the common narrative of “oppressed Muslim woman flees country”. Those are the sorts of stories that sell.
Enter disability.
Muslim. Arab. Disabled. Woman.
What if I am not interested in being confined to these strict boxes?
As a disabled writer, I am primarily preoccupied with how disability features in literature and media. I am a scholar of disability studies too, with an interest in how the subject has primarily been Eurocentric. My work attempts to rectify the many gaps in literature about disability and by disabled authors. To date, there are hardly any works dealing with disability and Arab and/or Muslim women.
My first collection of stories, Notes on the Flesh, was rejected by hundreds of publishers in North America and Europe. The work deals with disabled protagonists’ journeys, losses and complexities, and attempts to challenge non-disabled people’s stigmatisation of disability. The work was rejected on the basis of the following questions, summarised here, as they kept coming up from various publishers:
Eventually, the work found its way to the market, published by an independent Maltese press (Faraxa Press).
A couple of years later, I sought publication of my illness narrative Head Above Water: Reflections on Illness.
I approached numerous publishers in the UK and was met with comments such as, “This is too specific of an experience. I cannot relate.” The “I” here is interesting—who is this “I” that is in charge of what counts as universal and relatable? Is it really the case that non-disabled people cannot relate to even the mere possibility of disability being a part of their lives? How ironic, given that there are 14.6 million disabled people in the UK (according to Scope), not to mention their family, friends and colleagues. Which “I”, out of these millions, cannot relate?
One academic press responded with a slight interest in my work but was worried about sales, believing that as an academic residing abroad I may have a limited audience. Neem Tree Press in London was the only general trade A publisher to respond favourably. As a publisher with a medical background, founder Archna Sharma was keen on showcasing how disability and illness are the most universal human experiences. She was nervous about me being an Arab author residing outside the UK (harder to plan author events, fewer readers in the UK) but she wanted the book to reach a wide audience; her vision is to amplify voices that are often left struggling to be published.
If we allow disabled authors to tell the stories they want to tell, the ones they are uniquely qualified to tell, then we are letting stories breathe and be powerful as they are
After publishing Head Above Water, I find myself fascinated with readers’ positive reception of the book after agents’ and publishers’ initial rejections. Publishers claim to be seeking diversity and tweet about “looking for #ownnvoices to represent”, but there is still so much silencing of disabled authors’ own narratives. I am tired of the publishing industry’s demands and false promises. I have spoken to a number of agents, who explained that the industry wants to see illness narratives that are “success stories” and that give a sense of hope that all will be well. But not all disability stories have happy endings. Nor should they have to. These are real depictions of disability, ableism and its repercussions in everyday life, and like sexism and racism, they are not “feel-good” stories.
If we allow disabled authors to tell the stories they want to tell, the ones they are uniquely qualified to tell, then we are letting stories breathe and be powerful as they are. They must not be tainted and censored to fit a non-disabled perspective of health and wellness. When publishers allow these narratives to exist, they will broaden readers’ perspectives and infiltrate our subconscious biases. Stories have the power to stay with us, to change us, and it is my hope that publishers will see this and allow illness narratives to be what they are.
Shahd Alshammari has written numerous works to date, including Notes on the Flesh (Faraxa Press, 9789995748678, £11.99) and Head Above Water: Reflections on Illness (Neem Tree Press, 9781911107408, £10.99).