By Tugrul Mende
In her recently released memoir, Head Above Water, which explores ways of living with one’s body and of dealing with illness and disability, Shahd Alshammari reflects on her personal experience of Multiple Sclerosis. In a region where such issues remain under-discussed, Alshammari takes us “into a space of intimate conversations on illness and society’s stigmatization of disabled bodies”.
ArabLit contributor Tugrul Mende asked Alshammari about the process of writing Head Above Water, and the way illness and disabilities are presented in Arabic literature.
When and why did you start writing Head Above Water?
I started my journey writing poetry—I published a collection of poems, then I wrote Notes of the Flesh, a collection of stories dealing with disability and illness. Finally, I came to Head above Water, which I started writing in 2018. I came to it following a journey through different genres. I wanted to produce a non-fiction narrative. I wanted to include these experiences, not only my own, but also of people who were close to me—like students, people who were trying to understand what it would be like to discuss these issues, not only disability but also patriarchy or sexism in academia. It isn’t just about disability in society, but how it is treated in academia itself. These were some of the issues I wanted to tackle.
I am a Disability Studies scholar and I’ve conducted a lot of research about the topic of disability in the media and in literature. I didn’t find any representation of disabled Arab woman narratives—specifically in relation to Gulf woman narratives—in literature or in the media. I wrote Head Above Water with a mission to include the part of a narrative that did not exist. I was hoping to make a difference for students, readers, and academics. The disabled body is absent from literature, not only from creative fiction but also from non-fiction. It is really staggering. As a scholar, I needed to change this, and I hope to see more of this genre in the future.
It felt really isolating and confusing as to why there wasn’t anything around that dealt with these issues; was it because of the publishers or the writers? For me, it became a mission to change that lack of narrative. What better way than to include your own narrative?
Was there any other book or writer who motivated you to write about this issue?
There is one book that really influenced me, by Radwa Ashour, called Heavier than Radwa. In this book she talks about her experience with cancer. It has not been translated into English. She deals with the issue of cancer to the backdrop of the Egyptian revolution and her role in it. Her body becomes also political. I look up to her work. For her to write about cancer was really inspiring for me and eye opening. I wanted to follow in her footsteps. I wanted to bridge that gap and all I had was Radwa Ashour’s book.
What is interesting is that cancer is more common as a narrative. I haven’t seen any other form of disability or illness [as experienced by women]. To me it’s strange, because there are so many illnesses we can live with. One day you are completely fine and the next day you wake up ill, or you get a diagnosis out of nowhere. The common theme was always cancer; literature referencing cancer is often selected by publishers and there is a wide readership for those sorts of narratives. Even in fiction, we don’t often see illness or disability represented. It is there in some works, like in Taha Hussein’s memoir, which relates his experience with his blindness, as a man. This is different because you don’t see women’s bodies. You don’t see women’s experiences.
Could you give some reasons why this is such a case with this genre?
I think there are many reasons. There is silence around women’s voices in the Arab world, and in the Gulf even more so. Women’s bodies are still a no-go and a taboo. The ill body is even more hidden, more concealed. If disabled bodies are written about, even in Arabic literature, you will see them written about as a form of metaphor. You will see them in the form of a character who suddenly becomes blind because she was bad, or as a form of punishment.
It is because in general the memoir form was dominated by male authors. A few female authors like Latifa Sayyad wrote about their journeys. These were mainly writers writing about exile, about their journeys leaving their home nation, but not really reflecting on living in the body you have. We didn’t see much of that because I think in general there is a tendency to conceal the female body in Arabic literature, and to a large extent in memoir and non-fiction. Or it will be written about, as I said, more by male writers writing about illness, rather than by women expressing their own experience.
There was recently a novel that got a lot of attention called The Critical Case of a Man Called K [by Aziz Mohammed and translated into English by the late Humphrey Davies]. It is a beautiful book about a man diagnosed with cancer. The author didn’t say if it was based on his experience or someone else’s. I still search for these real-life experiences and I don’t see as much of them in Arabic literature as in western literature. There is a whole field of illness narratives and memoirs and the west has really worked with disability within the different genres of literature and media. It still seems that disability issues are left behind [in the Middle East]. We are now discussing women’s issues, we are talking about sexism, feminism, but ableism is something that it is still left behind.
What does the title Head Above Water mean for you?
The idea behind the title Head Above Water is that, is to do with illness and disability and that it’s not always sink or swim. You aren’t always going to be incredibly lucky or incredibly devastated. It is not black or white. I wanted there to be a space for randomness. “Head Above Water” really means that you are surviving, without necessarily knowing if you will get out of the water and survive. I wanted to embrace that randomness. It is a constant journey of surviving or keeping you head above water. Often, with illness narratives, we are searching for a happy ending, or a triumphant ending, or for the sick person to recover. I didn’t want to do that because I felt it wasn’t an authentic, or real, ending or understanding of illness—in this case with MS. It can be quite random. I wanted to capture it even in the title.
What were the most challenging aspects of writing Head Above Water and how did it help you to reflect on MS?
Head Above Water wasn’t just about me. The main mission wasn’t only to be therapeutic to me. Of course, it was a bonus. It was mainly to give voice to this experience we don’t otherwise see. I feel privileged to write both academically and creatively; I want to use that privilege wisely. I want to use my voice but the experiences of others who have been silenced because of society, and to somehow lend my voice to these stories. Books like these will gain a lot from different audiences. For me, that was the mission—to speak to all these different people. It is specifically about MS but universally about what it means to live in a body that is ill and stigmatized by society.
The difficulties involved revisiting painful and dramatic memories. As with any life writing, or genre of life writing, this difficulty crops up. One needs to get some distance. I would leave some chapters and revisit them later. It is not an easy journey. With autoethnography you are writing about yourself within your culture and it is less safe. My mission as an academic is for vulnerability to form a part of our experience of being human, and we need to write and speak about it. I think that it was my acceptance of vulnerability that allowed me to continue to write.
Did writing this book change something about yourself?
I think with Head above Water, I felt that sense of relief that I had done the hard job of writing and that I had found a publisher. I really struggled to find a publisher. The manuscript was rejected many, many times. The reason was always that it was too specific in all aspects. For me, this was missing the main point. It is not about me, but the experience of ableism, of discrimination that continues to happen to different age groups, to different people all over the world. My current feeling is that I am incredibly relieved to see the book out. I should have said to my younger self to write it earlier because there is a sense of joy to see it out there and to see it picked up by random people. I feel that everybody who reads it is able to recognize that illness is as big a part of our life as health. For me, I would definitely say, looking back, I am feeling very proud of it. It has been my life’s mission.
Why did you choose to write it in English and not in Arabic, what is the difference for you to navigate between those two languages?
I grew up in American curriculum schools and that’s the main reason. People speak a lot of English. For me it wasn’t a conscious choice, it was my only choice, I don’t feel equipped to write in Arabic as a writer. Maybe this was a reason why it didn’t find a publisher immediately. Most publishers would like to see it in Arabic and later translate it into English. Being written from a person who is living in the Arab world, they wanted to see it in Arabic. Arab publishers over here wanted to see it in Arabic too. It is incredibly hard to write it in English and then to find a publisher who is international and willing to publish an Arab narrative written in English at the same time. It is really hard for a publisher to just pick it up in English. I have had some publishers who asked if this is my native language. This is really complicated because it is not my native language but it feels like my first language, but I can’t claim it as my native language. I feel as if English is something like my stepmother and it’s a big part of my life. There is always this need to explain why.
You divided the book into four parts and named the chapters after the first letter of the chapter’s number (i.e. ‘O’, ‘N’ and ‘E’) Could you explain why you divided the book this way?
The chapters headings are meant to be fragmented and also not to be too fragmented. I wanted to use numbers for some sort of clarity. I wanted to break the chapters into parts of themselves, like MS—it breaks parts of yourself, but it is still the same you, with certain losses. I wanted to break the words in the chapter.
How did you choose the diary entries?
The original idea was to use diary entries and blog entries. I kept a blog for a very long time. I believe in documentation. I wanted this to be part of the book. The most important documentations are the diary entries and the conversations that happened and inspired the rest of the book. Diary entries are a really important part of the book, because it’s part of life writing. The narrative part uses the literary elements. I had to choose specific themes and ideas in order to explore the decisive items in such a short book. I wanted it to be compact and really address the themes of illness, sexism, patriarchy and academia, but also the love for teaching. I had to choose a select number of diary entries from a lot that I already have. I know there is still a lot that is left out and maybe there will be a second book at some point.
Do you have an advice for other writers who want to tackle similar issues?
In general, it would be hard to advise. For me, reading and writing were always very therapeutic. They saved my life. It sounds very cliché, but it is really true. Stories have been the place where I managed to understand life and other people’s description of life and their experiences. It made me more of a humble person. It gives you a world view. For me, reading and writing means learning to exist in the world with all its difficulties. Literature is one way where we can find a sense of home or belonging.
What are your next projects?
I think maybe I will write something similar like Head Above Water because I think that it is a genre that needs to be expanded. I will do the work for it but I hope to see more authors exploring it, whether in fiction or in non-fiction.
Shahd Alshammari is Assistant Professor of Literature and author of Head Above Water: Reflections on Illness (Neem Tree Press, London, 2022). She blogs at www.drshahdalshammari.com and is interested in disability studies, women’s studies, and Arab women’s literature.
Tugrul Mende is a regular contributor to ArabLit.