Disability

In conversation with Victoria Williamson, author of War of the Wind 

Posted on September 15, 2022 by - Neem Tree Blog

From Victoria Williamson (award-winning Scottish author of the Fox and the White Gazelle and The Boy with the Butterfly Mind) comes a thrilling new adventure story with delightfully diverse disability representation.

Set on a remote Scottish island, War of the Wind introduces us to a cast of characters with additional support needs. It is simultaneously a page-turning eco-thriller about government testing gone wrong and a heart-warming celebration of our differences.  I spoke with Victoria about War of the Wind, read on to find out more!

Have you always wanted to be a writer? 

I’ve wanted to be a writer ever since I was five years old! My parents took my brothers and me to the library every week when we were young, and stories were a huge part of my childhood. My mother used to read to us every night, putting on voices for all of the characters, from Bilbo Baggins and Winnie the Pooh, to Mr Toad from Wind in the Willows and Miss Trunchbull from Matilda. It was like going to the theatre every night, and it made sure there were never any arguments about bedtime, as we were always keen to get to bed to hear the next chapter! Although my father wasn’t keen on reading aloud, he played another important role in my love of books, which was reading a huge amount himself, and talking to me about books all the time. I learned from him that books weren’t just for children, and that reading could be an adult hobby and a lifelong passion. 

Please tell us a little bit your journey as an author? 

I started writing almost as soon as I learned to hold a pencil, although my first attempts at stories were barely-legible scrawls in small booklets made of folded paper stapled together. I’ve kept a few of these early ‘books’, which are mostly fan fiction retellings of my favourite cartoons, novels and TV shows. I wrote for fun all the way through school, and started writing my first proper novel when I was eighteen. It took me five whole years to finish, and although it (along with some other early novels) will never see the light of day, it was an important milestone in my journey to becoming a published author years later. I think many people see a finished novel on a bookshop shelf and think ‘I could do that, I just need to find time to sit down and get the words out’, which is a bit funny, as they’d never think of playing in the Albert Hall after fiddling about with a violin for a few months! I made the mistake of thinking that a writing career would be easy and inevitable when I was younger because I wrote so much and had been told by teachers that I had a good imagination, but I didn’t anticipate the amount of hard work involved in developing narrative arcs, story pacing and plotting skills. I think if I could go back now and give my younger self some publishing advice, it would be to stop daydreaming and start writing, as ideas are the easy bit, it’s the putting words down on a page after day that requires a lot of effort! 

What inspired you to write War of the Wind? 

War of the Wind was actually my mother’s idea. I was having dinner with her one night, when she said out of the blue, “Oh, I came up with an idea for a book for you today – it’s about wind turbines sending out secret signals, and it’s called War of the Wind.” She hadn’t developed the idea any further than that, but I loved the concept, and it planted the seed grew into the final novel. Wind turbines had always seemed a little spooky to me, and reminded me of the TV show and film adaptations I’d seen of The Tripods and War of the Worlds when I was a child. Every time I saw wind turbines on the horizon after that, I thought about what they might be ‘whispering’ to us, and what those secrets signals might be used for. 

Please tell us a little bit about the story and the main protagonist Max? 

The story focuses first and foremost on the journey of acceptance that Max goes on after losing his hearing in a boating accident at the age of twelve. When we join him at the start of the story on Scragness Island, aged fourteen, he’s adjusting to his new life by learning sign language and getting help in school from the additional support needs class, but he’s still angry at his life changing, and the impact this has had on his relationships with his friends and family. He’s so preoccupied that at first he doesn’t notice that people on the island are starting to act strangely after a wind farm is build off the island’s coast. But when he meets a sinister scientist called Doctor Ashwood at the substation, he notices that it’s not ordinary workers who are moving about behind the high fence, but soldiers. As the behaviour of the people and animals on the island becomes more aggressive and dangerous, Max realises Doctor Ashwood is conducting an experiment on the islanders using the wind turbines, and that he’s immune to it due to his hearing loss. It’s only by working together with three of the teenagers in his additional support needs class that he’s able to piece together the puzzle, and come up with a way to stop the experiment before it has tragic consequences. In the process, he finds ways to rebuild his relationship with his parents and accept his new baby sister, as well as finding new friends and reconnecting with old ones.  

In what ways did your teaching experience impact on your writing and in particular your development of your main character Max and his friends, Erin, Beanie and David? 

The characters in my stories are often a mixture of some of the many children I’ve taught over the years, who face many difficult situations at home and in school. Because these real-life issues crop up time and again, it’s important to give children the opportunity to discuss these themes in a safe environment, and helping pupils engage with them through books is often one way to bring up difficult themes in the classroom. As a teacher, I’ve been fortunate to hear many children’s stories and discussions, and this has helped me to portray Max and the other characters’ voices in a way that hopefully comes across to readers as authentic. Friendships play a huge role in teenagers lives, and so it was important that Max’s relationship with his family and his friends (both old and new) took centre-stage in this story. 

Society has a lot of misconceptions about children with additional support needs and this features heavily in your story, and your viewpoint as a former SEN educator is extremely refreshing to read. I wondered if you could tell us about some of these misconceptions and why you chose to write about this? 

People often underestimate what children with various disabilities and additional support needs are capable of doing, and assume that because they need help in one or more areas, then they must need help with everything, or are limited in terms of what they can achieve. I wanted to give the four main characters in this story a chance to show exactly what they could do – which turned out to be saving the day! Even though Max gets annoyed by people making assumptions about him because he’s deaf, Max himself is guilty of underestimating the abilities of other pupils in his additional support needs class – in particular Beanie and David. He assumes that David is less intelligent because he can’t talk, uses a wheelchair, and struggles to control his limb movements, but then Max discovers that David is actually the smartest boy in the class. The novel is written in the first person from Max’s point of view, so the reader goes on a journey with him as he learns about his own misconceptions, and realises that he has underestimated Beanie and David in precisely the same way that people underestimate him. Hopefully this will help readers to examine their own misconceptions about children with additional support needs, and to be less quick to make assumptions. 

How can writers ensure the representation of characters with additional support needs e.g., cerebral palsy and Down’s syndrome are as authentic as possible? 

The starting point is talk to as many people as possible with the disability or additional support need you’re portraying in your book, to ensure you represent their lived experience accurately – these experiences will be diverse, even for people with the same disability or additional support need. Make sure you do plenty of research, and use sensitivity readers to check over your work to ensure your portrayals are accurate. Charities can be a very good place to get accurate information, and you can learn a lot from their resource pages, as well as from the staff and service users. 

There are lots of Scottish words and phrases used throughout the story, how important is it that the native dialect is used? How do you think readers will relate to this? 

Scottish slang can be regional, but I’ve tried to use some current Scottish words and phrases, as well as some I heard and used growing up, to give a more authentic flavour to Max’s narration. If you’re setting a story in a particular place, I think it’s important to use phrases that reflect how people there actually talk, as opposed to writing everything they say in ‘standard English’ – which can come across as a little bit stilted, especially when writing a story in the first person. Hopefully it will show readers a way to use their own regional dialects in stories and encourage them to experiment with their own writing. I know that many readers won’t be familiar with some of these words, but I think most teenagers will be able to work them out from the context. If not, the dictionary at the back of the book will come in handy! 

I love that you have used different fonts in War of the Wind to highlight the importance of different communication methods. Can you tell us a little bit more about this? 

As a teacher, I’ve seen children communicating in many different ways in the classroom – though oral methods, written methods, and by using other methods, such as Makaton, BSL and computer programmes. I wove these different communication methods into the book and highlighted them in different fonts to help make them stand out for the reader. Hopefully this will spark some discussion by readers of the different ways that people can get a message across, and show that characters don’t have to say things out loud in order to play a full part in a story. 

What is the key message you’d like readers to take away from War of the Wind? 

I’d like readers to come away with a better understanding of various disabilities, to examine and question their own assumptions about what teenagers with disabilities are capable of, and to recognise that everyone has important contributions they can make. 

Do you have any other works in progress that you can tell us about? 

My next project for Neem Tree Press involves issues that are unfortunately very familiar to families in the current cost-of-living crisis: food banks, homelessness, and financial difficulties. It’s a story of family, and about friendship overcoming the odds. Look out for more details in 2023! 

Finally, I wondered if you could suggest three top tips for aspiring middle grade / YA authors? 

  1. Don’t write in a vacuum. Writing can be a lonely business, but it doesn’t need to be. There are lots of other friendly writers out there who can be a great source of support on your writing journey. Join a writing group, and try to get into the habit of giving and receiving reviews and comments. This will help you hone your craft, and polish your work in progress before you submit it anywhere. 
  1. Write regularly. Try to get into the habit of writing a little bit every day, or every week. Writing is a skill that requires regular practice to perfect, so try to make time to add a little bit to your story on a regular basis, rather than saving everything up until ‘the holidays’ – when you’ll find that a novel will take longer than you think, and sustaining the motivation to complete a book is a lot harder than it looks!  
  1. Don’t give up. There’s a huge amount of rejection involved in a writing career, and it’s important not to take each ‘no’ too personally. What might not work for one publisher might just be the very thing that another is looking for. So use any feedback you get to help polish your work, and keep writing new work. The more you hone your craft, and the more stories you produce, the more likely it is you’ll get that ‘yes’ that you’re looking for. 

War of the Wind is publishing September 23rd and is available to pre-order now.

Click here to pre-order a copy!

Global Accessibility Awareness Day: Why It Matters

Posted on May 19, 2022 by - Neem Tree Blog

Global Accessibility Awareness Day (GAAD) takes place every year on the third Thursday of May. As the term clearly indicates, it is about making the web (and everything else) more accessible for all of us. People with different disabilities have the same right to access the web, digital media, social media, and the world we live in an easy and accessible way. What does this mean for content creators, digital media producers, and publishers?

As an individual living with disability, I am an author and scholar of literature and Disability Studies. I teach undergraduates and many of my students live with different disabilities. It is incredibly important and essential to their well-being to be able to access the material they read. Some of the largest publishers still don’t include audiobooks (especially for academic textbooks) and this is utterly baffling. Readers come in all shapes and forms.

Hardback copies are not the crème de la crème of books that they are made out to be. Yes, I know, it feels “so good.” It “smells so good” and “it’s a real book.”

Pause. Let’s try a quick exercise:

Head over to your favourite hardback copy (it can even be Head Above Water, if you pre-ordered a copy). Now clench your fists. Real hard, until you can feel heat in your hands. Do not unclench your hands. Now pick up the beautiful book. Flip through its heaviness, page by page.

Now try again. Close your eyes. Pick up the book and flip through the pages. They feel light and airy, don’t they? Now quote your favourite passage. Couldn’t catch anything?

Now let’s try the last exercise. Open the book to your favourite passage and step away from the book. Walk backwards until you are at least 1 meter away from the book. Can you still read without squinting?

Large fonts, braille, e-books, and audiobooks are a few of my favourite things in the world of books. Accessibility ought to be a global initiative, every day, something that comes naturally to policy-makers, web designers, publishers, teachers, and everyone else. We don’t think about what it means to have books and social media posts that are accessible. It’s not the default setting – unless you live with disability or are a good ally. Abled-bodied allies pay attention to access.

My book, Head Above Water, is out soon and we made sure the book is out in most forms and the audiobook is one initiative that Neem Tree Press believes in. We embarked on journey of accessible books together and it is my hope that other publishers and authors will make accessibility part of how they measure success. Readers read if you make sure they can. Reading shouldn’t be a privilege.

So happy Global Accessibility Day and here’s to better allyship!

 

Head Above Water will be published by Neem Tree Press on 30th May 2022 (World MS Day)!

 

Pre-Order your copy of Head Above Water here

 

About the Author

Shahd Alshammari is an author and academic, and lives with Multiple Sclerosis. She holds a PhD from the University of Kent, Canterbury and spent her graduate years in the United Kingdom. She returned to Kuwait to teach literature and pioneer disability narratives and voices. Her works center on disability, women’s studies, and Arab women’s narratives. 

You can find more about the author here:  www.shahdalshammari.com
Or on her blog here: www.drshahdalshammari.com 

Head Above Water: Shahd Alshammari Exploring the Disabled Body 

Posted on April 27, 2022 by - Neem Tree Blog

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)!

 

Pre-Order your copy of Head Above Water here

In Conversation with Shahd Alshammari, author of Head Above Water. 

Posted on April 19, 2022 by - Neem Tree Blog

From her research on illness narratives and disability studies comes a thoughtful reflection on a personal journey with Multiple Sclerosis. Kuwaiti-Palestinian author and academic, Dr Shahd Alshammari’s latest memoir, coming this May, is a moving, inspiring and multi-faceted look at her life as a woman in a patriarchal society, in academia, and with a chronic illness. It is therefore our extreme pleasure to share our interview with Alshammari regarding the novel’s origins and themes, starting with some background on the author herself.

Please tell us a little bit about yourself, what you do and your journey as an author? 

I teach literature with a focus on women and disability studies. I also teach a short story writing class which I especially love. I started writing ever since I can remember. My first was a small, self-published poetry collection called On love and loss. I later published Notes on the Flesh, a collection of stories about disability and love.  

What inspired you to write Head Above Water? 

I read lots of memoirs, narrative nonfiction and essays. My favourite was by Nancy Mairs’s called Waist-High in the World: A Life Among the Nondisabled” (1996). I realized there was nothing that dealt with hybridity and disability, or Arabness and disability. There was no representation whatsoever. I felt I had to correct that gap in the literature. 

What do you love about writing non-fiction?

Non-fiction allows you to reflect critically on life’s experiences. I especially like life-writing and illness narratives because I have studied the genre and feel it is usually well-researched but can also be quite personal. I believe non-fiction offers quite a lot of personal histories that we can refer to as human beings. Fiction does this too, of course, and I read and teach fiction. But I am drawn to non-fiction because of the platform it provides us for telling life narratives. 

Why did you choose to write a memoir about your experiences living with Multiple Sclerosis? 

Precisely because it’s an experience that is often misunderstood and there’s a lot of fear and myths around MS (and other disabilities). However the work deals with so much more than just my experience of MS. It is about the experience of pain – in whichever form that comes. 

Why did you name the book Head Above Water? What is the significance of the title?  

I feel that captures how we survive. I can’t say more – read to find out! 

You often refer to MS throughout Head Above Water as an invisible disability; you say ‘MS, then, almost seems non-existent. A ghost that attacks your body.’ Please can you explain what you mean by this, especially for those who have not heard of this illness before.   

With MS, sometimes you can’t see it. You can’t always see me (or others living with MS) with a wheelchair, walker, cane. You can’t see the numbness, the tingling body parts (and it’s not pleasurable!) and you certainly can’t see the pain. MS is like a heavy burden that the body carries. You can’t always see it which makes it harder to believe. Just like lots of illnesses go unnoticed (Chronic fatigue syndrome, fibromyalgia, etc) and this adds to the stigma towards people with invisible disabilities.  

You’ve previously published a poetry collection called On Love and Loss (2015), an academic monograph titled, Literary Madness in British, Postcolonial and Bedouin Women’s Writing (2016) and more recently, a collection of short stories called Notes on the Flesh (2017). At the heart of all of these narratives you place women: disabled heroines, classic authors/characters and even yourself. Coming from Kuwait, how important is it for you to see representation of females in literature and more so females who also have disabilities or long-term chronic illnesses, a subject which is still quite often taboo in many parts of the world.  

I feel it is my life’s goal – my only mission, really, to write about these experiences that have gone unheard of for so long, and are so hard to find in literature. Literature has to house all experiences because there isn’t one “universal” experience of being alive, of pain, and of survival. It was my life’s goal to write this book.  

After reading this book, what do you hope your audience will reflect on?

I hope my readers will reflect on what it means to be alive, living with others, living with disabled individuals and abled-bodied individuals, living with an awareness that we all navigate the world very differently and it’s important to be aware (and kind) to others, ourselves included.  

Did you experience any challenges writing Head Above Water, what were they?

Many, but mainly, writing about pain can be excruciating. It can be quite triggering, as in, the realization that I can still re-visit the pain, and it can feel very much like it’s happening all over again. It is hard to write with a certain distance from the narrator.  

If you had to give MS survivors a key message, what would it be?

MS makes life very challenging, but here we are. That, in itself, is a reminder that we are still trying. I hope many will share their experiences with friends, family, blogging, social media, etc.  

In Head Above Water, you look back on your younger years, when you had first been diagnosed with MS at eighteen-years-old, what is the one piece of advice you wish you could tell her?

Self-love. Have more of it, and find a tool-box to keep you going. Place all your favorite things in life there to keep using them later.  

 

An Excerpt from Head Above Water: 

 “We will all become ill one day. It’s part of the cycle of life, just like death, but we choose to avoid it, until it becomes a part of us. That is the hardest part. My younger self found it to be a betrayal of the body. I was young and invincible. Today, I accept illness and disability as part of who I am. The way I measure my life in moments of fatigue, energy spikes, and continuous losses, while I gain clarity in other areas.”

 

Praise for Head Above Water:

“Shahd Alshammari’s sensuous prose explores the manipulation of memory, the question of time, and gender politics. We are invited to reconsider the intricacies of love, the body, motherhood, the pervasive power of language, the power of women’s education, and the synergy between the Professor and the student.” – Jokha Alharthi Omani author of Celestial bodies, winner of the International Man Booker Prize (2019) 

 

“Reading Alshammari’s work, I thought continually of Yeats’s famous line, “a terrible beauty is born.” In this book, illness is that terrible beauty, always affecting but never determining the author’s life.” – Arthur W. Frank, Ph.D. Author of At the Will of the Body and The Wounded Storyteller  

 

“A necessary and beautiful account of life with a sometimes-invisible and unpredictable disability, complicated by both patriarchy and racism, as well as a professor’s love letter to the act of teaching and being taught.” – Marcia Lynx Qualey (@Arablit) 

Head Above Water will be published by Neem Tree Press on 30th May 2022 (World MS Day)!

 

Pre-Order your copy of Head Above Water here!

 

What is Multiple Sclerosis, an insight into Shahd Alshammari’s Head Above Water. 

Posted on March 18, 2022 by - Neem Tree Blog

Shahd Alshammari’s upcoming memoir, Head Above Water takes us into intimate conversations on illness and society’s stigmatization of disabled bodies. We are invited to ask the big questions about life, loss, and the place of the other. Alshammari’s narrative builds a bridge that reminds us of our common humanity and weaves the threads that tie us all together. Through conversations about women’s identities, bodies, and our journeys through life, we arrive at a politics of love, survival, and hope. 

Throughout this important and beautiful account Shahd reflects on her life as a young student and later as an Assistant Professor of English Literature in Kuwait. She shares many sensitive conversations with her students and about her own life. Having been diagnosed with Multiple Sclerosis, a sometimes-invisible and unpredictable disability, at the age of eighteen, she provides readers with an insight that is both provocative and insightful. Shahd is a pioneer in narrating chronic illness and her work often centres disability, women’s studies, and Arab women’s narratives. Her “new memoir is a sensitive and moving invitation to reconsider the stories that we are made of.” (Dr. Roxanne Douglas, University of Warwick.) 

 But what exactly is Multiple Sclerosis (or MS for short)?

‘MS, then, almost seems non-existent. A ghost that attacks your body. Because it is my body which has somehow decided to plot against my corporeal self, my ethereal self, and my self-image is shaken. This “self” of mine is called into question. How am I to come to terms with the fact that I must succumb to the will of the body, when culture has always suggested that the power of the mind is endless?’ – Shahd Alshammari, author of Head Above Water (2022).

Multiple Sclerosis (MS) is a condition which affects the central nervous system (the brain and spinal cord). In MS, the coating which protects the nerves, also known as the myelin sheath, is damaged. It is an auto-immune disease, where the immune system shuts down and attacks the nerves protecting this sheath. This process is called demyelination and this disrupts the ‘messages’ being transmitted around the body and to the brain, causing them to slow down, or stop entirely.  

The term ‘Sclerosis’ originates from Greece and means scarring. The demyelination process causes many scars or lesions in different places within the brain and spinal cord which results in a range of symptoms. Some of the most common are fatigue, unusual feelings in one’s skin (such as pins and needles, numbness or burning), problems with eyesight, memory and thinking problems, and walking difficulties. 

According to the MS Trust, it is estimated that more than 130,000 people in the UK have been diagnosed with MS. It is also nearly three times more common in women than in men. MS is a life-long condition but it is not a terminal illness and it isn’t infectious or contagious so it can’t be caught or passed on to other people. Those living with MS experience it differently, and symptoms vary from person to person and from day to day. This can make MS rather unpredictable. 

Find support for MS 

MS can be extremely hard to deal with. But whether you’ve had it for a while, are newly diagnosed, waiting for a diagnosis or care about someone living with MS, use the links below to find support. 

MS Society

Website: https://www.mssociety.org.uk/   

Freephone: 0808 800 8000 

MS Trust

Website: https://mstrust.org.uk/  

Freephone: 0800 032 3839 

Email us: ask@mstrust.org.uk 

MS UK

Website: http://ms-uk.org/  

Freephone: 0800 783 0518 

Praise for Head Above Water 

“The core of this book lies in its intimate questioning of loneliness and disability. The soul is held captive by the body, but the body is also the finding place, the freeing place. Shahd Alshammari’s sensuous prose explores the manipulation of memory, the question of time, and gender politics. We are invited to reconsider the intricacies of love, the body, motherhood, the pervasive power of language, the power of women’s education, and the synergy between the Professor and the student. It is a brave book.”  – Jokha Alharthi Omani author of Celestial Bodies, winner of the International Man Booker Prize (2019)    

 “Shahd Alshammari’s memoir of life with MS is one of the first distinctly 21st century illness narratives. She situates chronic illness at the intersection of issues that include gender, exile, medical experimentation, and the politics of the Middle East. Her memoir becomes truly a dialogue, as her story fills with the voices of other women and men she has known, and how illness disrupted their lives. Reading her, I thought continually of Yeats’s famous line, “a terrible beauty is born.” In this book, illness is that terrible beauty, always affecting but never determining the author’s life.”  - Arthur W. Frank, Ph.D. Author of At the Will of the Body and The Wounded Storyteller  

Click here to pre-order Head Above Water which will be published on May 30th 2022 (World MS Day). 

 

About the Author 

Shahd Alshammari is an author and academic, and lives with Multiple Sclerosis. She holds a PhD from the University of Kent, Canterbury and spent her graduate years in the United Kingdom. She returned to Kuwait to teach literature and pioneer disability narratives and voices. Her works center on disability, women’s studies, and Arab women’s narratives. 

You can find more about the author here:  www.shahdalshammari.com
Or on her blog here: www.drshahdalshammari.com 

Learn more about Head Above Water – Neem Tree Press 

 

This article is based on the information references below: