This week is Multiple Sclerosis Awareness Week which runs from 25th April to 1st May. It provides an opportunity to highlight what is often an invisible and misunderstood condition, currently affecting around 130,000 people in the UK, according to The MS Trust Charity.
Assistant Professor of Literature and author of the upcoming memoir, Head Above Water, Shahd Alshammari narrates what it’s like living with Multiple Sclerosis, what it’s like to have a disabled body in a very able-bodied world and the barriers that stop her everyday tasks. When asked about this account, Dr. Nawar Al-Hassan Golley, author of Reading Arab Women’s Autobiographies, says “Shahd Al Shammari closes her eyes, gets closer to herself, and produces a breakthrough narrative on dealing with a chronic illness. Conversational in tone, yet candid and probing in nature, Head above Water fills a gap in disability narratives by Arab Women.” So it was only a pleasure to interview Alshammari and dive deeper into this non fiction narrative which is going to be published on World MS Day, May 30th 2022!
As a scholar of English Literature and Disability Studies, you have a specific interest in the representation of female protagonists in literary texts. Your upcoming memoir Head Above Water is also about your experiences with Multiple Sclerosis as an Arab-Kuwaiti woman. Why did you decide to write a memoir based on your own experiences?
Precisely because it was so difficult to find any texts that dealt with disability in a non-tragic light. My work is narrative nonfiction, rather than a full memoir. I wanted to expand the conversation on women’s bodies and de-stigmatize the idea of disability. I wanted people to read the text and want to understand more not just about their bodies but also how disability can happen to anyone. It is something we need to think about and we need more allies for disabled people from the abled-bodied community.
What is the relationship between gender and disability throughout Head Above Water?
Gender is always the first privilege – before we even begin talking about disability. Disabled women are doubly marginalized and othered. This is portrayed in Head Above Water and I won’t say more – no spoilers!
What are some major misconceptions and beliefs regarding disability that you find yourself debunking most often?
People tend to ignore invisible disabilities the most. Invisible disabilities go unnoticed and as such people can attack you for using the disabled parking, or seeing you use a wheelchair or a cane one day, and the next day get up and walk. You can be accused of lying, performing disability, asking for attention, etc. They also tend to fear neurodivergence. There are so many misconceptions that include “talking down” to neurodiverse people, thinking they are incompetent, when the problem is ableist assumptions of competence.
As well as writing about MS and disability you feature your own upbringing. You write about notions of identity and hybridity:
‘Mama taught me to read. The first sentence we constructed together was, “I can read.” Mama had placed flash cards with words and was teaching me how to construct a sentence in a language that wasn’t her own. She didn’t want me to fall behind in school, and I was struggling to balance two languages and two dialects. Hybridity was proving to be more about balancing the mixture than fusing it wholly together. There was no whole. Everything could easily fall apart. That’s also when I began to fall in love with language, cling to it, try to find a place in it. Language was a place I could create a new identity for myself, someone I could fashion the way that I wanted.’
What challenges did you find with the notions of identity and hybridity throughout the novel? How do you hope readers will relate to this?
Language is always complex and our identities are never “pure” or original. In that sense, we need to be more open to hybridity in language, identity, culture, ability/disability, sexuality, and existence. We cannot place emphasis on “purity” and “wholeness” (although both Eastern and Western cultures do this) because it is a false narrative that privileges specific experiences and identities. I hope readers will think more about hybridity, hybrid identities, and even narratives. Head Above Water is a hybrid narrative – it blends elements of fiction with nonfiction, and utilizes diary entries, poetic reflections, and other experimentations of genre.
Throughout Head Above Water, you emphasise the power of storytelling and the profound impact it can have. Would you mind expanding on this idea for readers?
Every story we read has an impact on us. Every story we tell and re-tell changes our perceptions, expands our thinking. Think about Disney and the stories we grew up reading and watching. Each story left us with so many misconceptions about disability. For example, most of the evil characters tend to be scarred, ugly, fat, old, and that is associated with lack. Storytelling is so powerful because it shapes our conceptions and misconceptions about everything. We tell stories all the time, too. We even tell ourselves stories “I am a failure, I have nothing to keep me going” or “I will never get over this” – tons of short narratives that have an impact even subconsciously. Lots of unpack there, but I will leave you what Head Above Water says about stories.
You previously mentioned how able-bodied people are very often not the great allies they think they are to disabled folk. What sort of allyship do you think is actually helpful? How can they do better?
Allyship starts with recognized your own internalized ableism and bias. We start with choosing the right language when speaking about disability or to disabled people. Ask for our pronouns. Ask what people want to be called. Don’t undermine the narrative of disability and pity it or find it inspiring. Be open to challenging your views and discussion. Listen, rather than jump to conclusions about disabled people’s lives. Allyship is also the type of publishing that is accessible to all readers. Audiobooks, ebooks, larger font. Publish more disabled writers’ work, offer more prizes for disabled writers, challenge ableism everywhere.
After reading this book, what do you hope your audience will reflect on?
On life, survival, and hope. The three key ideas in Head Above Water.
Head Above Water will be published by Neem Tree Press on 30th May 2022 (World MS Day)!