Reviewed by Michael Northen
When Shahd Alshammari’s Notes on the Flesh appeared in 2017, it offered a perspective not commonly found in disability literature: the first-person experience of a woman with multiple sclerosis living in an Islamic culture. In that book, Alshammari takes on such topics as patriarchal society, the male gaze, and the woman’s body viewed as a means of reproduction, as well as the internalization of those ideas. In a recent Wordgathering interview, Alshammari also pointed out the parallels between those attitudes toward women and the way that disabled bodies are seen by societies at large. Changes are needed and, as the author says, “I realized that in order for us to start, we have to write about it. To write about it meant documenting all of these stories” (Alsahammari).
The call for disabled people to tell their own stories has been around since at least as long as the now famous mantra, “Nothing about us without us,” but the actual constraints of the body itself can make such storytelling challenging. Shahd Alshammari’s latest book, Head Above Water, is a witness to that difficulty. Diagnosed with MS in her teens, Alshammari has gradually found even the attempt to follow the advice she gave in her first book problematic. She warns the reader that even as she begins to tell her story she is still searching for the way to shape it and the means to do it. She grapples with both the necessity for and the impossibility of narrative:
All I want is to wake up. I want to stay awake for this part of the story. If I manage to write, then I stayed awake. How to call upon my internal narrator to tell the story of a body, of a self that is trapped inside, yet completely convinced that there is no way out – except through the body? I am aware that time will have its say. I have perpetually sleepy eyes, and my eye muscles are closing in on me, bringing me disturbingly closer to myself. I have to close them. I have to look inside. What follows will be what comes through. (p. 11).
The book’s playful table of contents is more figurative than functional – at least in terms of serving as a guide to the reader. It reveals only that the book is divided into four parts in which the chapters are named according to the spelling of the number of that part so that, for example, Part One is composed of chapters named O, N, and E. Alshammari asks the reader to struggle with her as she wrestles with just what shape this book is to take and how she will tell her story.
The difficulty in finding a means of speaking is what occupies Part One of the book. It is a purposefully disorienting process that “oscillate[s] between the present and the past” but advises “as with the messiness of time and its illusions, one only needs to move along.” (p. 9) The frame story that emerges is that a former student and friend, Yasmeen, has stopped by to visit her and found all of Alshammari’s books and papers in disarray. Yasmeen volunteers to come in once a week to try to sort out all of her former professor’s work. As she sorts through the work, she urges Alshammari to try to write the second book that she always said she would. While Alshammari protests that she is unable to do so because of difficulty in concentrating, staying awake, and physically writing, Yasmeen turns the tables on her, giving Alshammari the advice that she had previously given her students about the importance of persistence and getting their stories down.
Yasmeen discovers an old pile of black notebooks that turn out to be Alshammari’s diaries. She proposes that they proceed by her forming a question that she wants to ask Alshammari from the diaries and then writing down the response that it provokes. Thus, by the end of part one of the book, they have formed a strategy that will guide the structure of the remaining three parts. Yasmeen will pull a quote that interests her from the diaries. They will discuss it and then Alshammari will use that as a prompt to discuss that part of her life and experiences. Since the diaries are more or less in chronological order, this gives a natural framework for talking about her life in the order that events occurred.
The core of Head Above Water takes us through the diagnosis of Alshammari’s MS, doctors’ attempts to treat her, her subsequent education in Kuwait and Great Britain, and her return as a professor of English in Kuwait. It is an engaging narrative, on its own, one in which the importance of education plays a central role. Periodically in her story, the author stops to address the reader directly:
At times, I will sound as though my experience is the only experience worth listening to, and when that happens, forgive me. I know only what I think I know and what I gather I have felt and what others have shared with me. Our shared experiences and our pain have become part of this narrative. If you can take anything from these narratives, then just consider what it’s like to listen, to share, to think about the body and ourselves. (p. 40)
Far from being disruptive, these intrusions and side bars contribute to making Head Above Water rewarding reading. As Alshammari introduces us to the cultural context in which her story takes place, she also provides readers with a broader perspective on disability. One moment we may be shaking our heads with disbelief at some of the attitudes and practices that continue to exist in Kuwait, then almost immediately recognizing that at their core, the experiences of disabled people in the United States are not a whole lot different.
An internalized sense of shame seems to pervade the entire air that the women in Alshammari’s world breathe. Because of a patriarchal culture’s twin views of a particular concept of feminine beauty and a woman’s major function being the production of male heirs, diagnosis with multiple sclerosis (or any other disability) as happened to Alshammari can be equivalent to banishment from society. Doctors do not want to acknowledge it, fathers of daughters do not want to hear it, and young women themselves do everything they can to cover up any symptoms of it. As a result, such concepts as passing and an ethos of overcoming prevail. The push to claim a disability identity, so prevalent in the United States, is not even on the backburner.
Alshammari relates the experience of trying to get accommodations for her college classes, something that will be familiar to many reading the book. At a certain point, there was no hiding the toll that MS was taking on her body. She used a cane and both walking and staying awake were exhausting. In Kuwait, however, women are not allowed to apply for accommodations; only a male relative can apply for accommodations. The Catch-22, though, is that male family members will not apply for a female relative because having such a relative is considered a public shame. Alshammari was fortunate to have a father who loved her and had an important position. At first, he too resisted helping her to get the accommodations, but Alshammari’s father was a Bedouin with a very martial ethos. She presented herself to him as a warrior who was fighting back against a disease that was trying to conquer her. In a fascinating paragraph, she writes:
Evidently, the only way he could come to terms with what was happening to me was to understand the disease as a metaphor for war. He hadn’t ever heard of illness as anything other than something to be quiet about. It was a war in the middle of the night, an invasion of the tribe, a raiding army that wants to conquer you while you’re asleep and defenceless. And if I was at war with illness, then I must be a warrior, regardless of gender. He would say, “This is just āstrāha Ť mharib.” “Mharib” was a noun reserved for men, but something about my fight with illness made me genderless. This made me triumphant, as though I had risen above being a girl (p. 74).
Head Above Water is full of such surprises. Unfortunately, most American readers do not have to go far from home to find parallels. How many “inspirational moments” have we seen on nightly news programs in which a disabled athlete is praised for fighting to overcome all obstacles and win?
Alshammari did not find acceptance much better when she traveled to the UK to do graduate work in English literature. Not only did her professors resist making any accommodations for her but she faced a further prejudice – that of being Muslim and from the Middle East. Her feelings of alienation were heightened by the fact that her best friend Hannah, also from the Middle East, was blond, light-skinned, green-eyed and not clearly Middle Eastern in appearance. When they were together, others would talk to and interact with Hannah as though she were simply another student but ignore or talk down to Alshammari. She was forever an outsider.
As all of these things were going on Alshammari increasingly came to realize that if attitudes toward disability and women were going to change, she would have to be part of it. She returned to Kuwait to teach English literature. It is almost impossible for readers to resist comparing Head Above Water to Reading Lolita in Tehran, when they come across the account of the author’s efforts to teach Shakespeare’s Othello to separate classes of male and female students, but Alshammari comes out favorably in the comparison because of the way that she is able to communicate the depth of the bias that she is trying to change.
Because her emphasis is on the need for others to tell their stories if change is to come about, Alshammari incorporates the accounts of the experiences of others who are disabled, women, or both into the telling of her own journey. In the process, she introduces readers to a wide variety of characters and (what for many readers will be) unfamiliar concepts such as Fana’a, Aib , and mahra, and takes on discussions of topics like polygamy, all the while punctuating her narrative with Italicized diary entries or questions from Yasmeen. All of these give the book a richly textured feel.
There is also a sense in which Head Above Water serves as a cautionary tale. It is too easy for westerners who approach writing from parts of the world that operate differently than our own to plunge in with judgmental eyes and our concepts of disability or feminist advocacy. Alshammari’s memoir reveals the depth of the issues facing other cultures and forces us to consider the difficulty, desirability, or wisdom of imposing our own ideas and solutions on others in their quest for change.
Title: Head Above Water
Author: Shahd Alshammari
Publisher: Neem Tree Press
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About the Reviewer
Michael Northen is a past editor of Wordgathering. He also participated in the anthology Beauty is a Verb: The New Poetry of Disability and the anthology of disability short fiction, The Right Way to Be Crippled and Naked (both from Cinco Puntos Press). He is currently working on editing a new anthology of disability poetry.