The Body Speaks, but Who Listens?

One of the few Arab Anglophone texts on disability, charting the literary territory of the body with disability, is Kuwaiti-Palestinian author and academic Shahd Alshammari’s mesmerising memoir, Head Above Water (Feminist Press, 2023). Alshammari’s memoir is an Arab, Kuwaiti, illness narrative that meticulously touches upon the overwhelming, overlapping themes of love, identity, and disability.

According to the Economic and Social Commission for Western Asia (ESCWA):
'Globally, at least 446 million people – or 6 percent of the world population – are estimated to be living with disability. By contrast, only 2 percent of the Arab population is reported to be living with disability. This data varies significantly for different countries in the region from 0.2 percent and 1 percent in Qatar and Mauritania to 4.8 percent and 5.1 percent in Sudan and Morocco'. Additionally, people with disability, in the Arab world, confront challenges to employment and education.

Everywhere, particularly in patriarchal societies, disability poses additional challenges for women. Women with disability are double-marginalised, because having a disability compounds gender-based prejudice. Most people in the Arab world consider men to be invincible. When men in the Arab world become disabled, they still retain some type of dignity as they can fit their stereotypical image, regardless of the type of their disability; women with disability do not. Diana Alghoul argues:

Marriage for women with disability, therefore, becomes ‘problematic’. Their marriage chances are profoundly affected by their disability, particularly when there are doubts about the ‘genetic’ cause for a disease such as muscular atrophy. While, in general, most men with disability do not consider that their ability to become husbands is affected by their disability. Statistics in Jordan, for example, show that 62% of women with disability are single.

Furthermore, according to official statistics in Bahrain and Syria, the percentage of women with disability who completed higher education was only one-third of the equivalent rate of men with disability. In Lebanon, for example, a son with disability is treated differently from a daughter with disability within the same family; he is sent to school while she is not. Families also secure a wheelchair for their sons, considering such efforts unnecessary for their daughters.

Reflections on Disability

Aged 18, Shahd Alshammari woke to find her body completely numbed by Multiple Sclerosis (MS), her life was then transformed into that of a young person living with chronic pain. “Writing has been my antidote to pain,” says Alshammari in a recent interview. Alshammari’s Head Above Water is a reflection on disability and illness as well as the stories of other women whose lives have been similarly afflicted, highlighting how these women have not only had to fight against the illness, but also for acceptance by a society that rejects anything and anyone that is different. The text, de facto, departs from conventional narratives of disability. As Alshammari recounts her harrowing experience, the text also conveys subtle and rich discourses on the subjective experiences and on the normalisation of disability, which paradoxically triggers empowerment, while not being fully empowering. Alshammari’s writing style, which frequently oscillates between tenses and points of view, creates a flowing intimacy that fully immerses readers in both her low points and her triumphs.

While most scholars agree on the difficulty of defining disability 'as a coherent condition or category of identity,' 'the central tenet of disability studies [is] that disability is produced as much by environmental and social factors as it is by bodily conditions'. In Alshammari’s Head Above Water, it becomes evident that there is a pervasive and ingrained stereotype concerning disability within Arab society. This stereotype portrays disability as the antithesis of normalcy or perfection, resulting in individuals with disability being seen as incapable of fully participating in a society characterised by rigid gender expectations.

Critical disability studies aim to explore how disability functions in different cultures and within multiple disciplines. “Feminist disability studies,” argues Kim Q. Hall, “makes the body, bodily variety, and normalisation central to analyses of all forms of oppression.” Therefore, Head Above Water is a timely intervention to feminist disability studies, as it offers a space to an Arab woman with disability to speak against social discrimination. Similarly, Professor G.T. Couser calls Head Above Water “a welcome addition to the growing body of illness narratives.”

Furthermore, the text calls for destigmatisation of disability by positioning Alshammari’s reflection on her illness/disability against the framework of ‘social stigma’ as defined by Erving Goffman. If the narrative voice openly and unambiguously represents Alshammari as an Arab academic woman with disability, disability is not exclusively depicted as a personal disaster. Throughout the memoir, Alshammari reflects on familial and societal expectations. She demonstrates a deep understanding of the multifaceted roles she assumes in her daily life. Alshammari writes:

Lost in Arabic Literature? Narratives on Disability

While disability is a common theme in literature, life narratives authored by people with disability are relatively scarce in the Arab world, leaving Arab women with disability without literary or cultural precedents to represent their lives. This absence is both surprising and understandable when taking into account both the sociological and historical context. Scholar Abir Hamdar, contends:

Characters with disability tend to remain in the shadows, in the margins of the chapters, always tragically succumbing to their fate as both ‘ill’ and women. Arab women authors had done so much with gender oppression and gender politics, but disability politics remained an unchartered territory.

In the same vein, modern Arabic Literature, like other literatures of the Global South, often portrays women with disability as a burden on society and relegates them to the fringes. This representation of people with disability, particularly women, is common in modern Arabic culture, leading to a need for self-representation in the form of life narrative. Alshammari has chosen the memoir genre, since she wanted a form that would allow the story of her personal and professional lives to be informed by the conditions of her disability.

The Body as Container of Trauma

In the Arab world, particularly in the Gulf region, voices of women with disability are not heard and their bodies remain a taboo subject. Discussions around disability in Arabic Literature are often reflected in metaphorical terms rather than as an authentic experience, and as such the body with disability is far too unpalatable. Additionally, there has been little reflection on living in one’s own body. The tendency to conceal the female body in Arabic Literature, including life narratives, has contributed to this lack of representation.

“We experience the world through our bodies,” writes Alshammari, “and what we see, touch, hear – think of all your senses. I’ve always thought of the body as a vehicle.” She also considers her body “as the container that (she has placed her trauma) in.”

Alshammari’s words have been written on the body, from the body, from the very point of resistance and simultaneous vulnerability of a woman who loves, a woman who struggles with disability, and a society that excludes and marginalises her voice. Alshammari is at war with tradition, modernity, and disability. Hence, she invites her readers to consider the undiscovered country of illness and invalidity in literary writing. “There is no record,” Woolf lamented, “of the daily drama of the body.” However, this is precisely what Alshammari’s memoir sets out to do, because it scrutinises not only chronic pain but also her subjective experience of disability, along with the isolation it entails.

Conclusion

On a final note, the human body is never neutral, and Head Above Water gives meaning to a body with disability through the power of language. Encompassing acts of memory and recording, Head Above Water has been crafted in a manner that echoes MS’s multiple symptoms.

Alshammari’s frequent shifts between tenses and points of view mirror MS’s randomness and fragmentation. Likewise, the chapters’ headings are meant to be fragmented; they are broken into parts of themselves (O, N and E, for instance) to be similar to MS that breaks its victim, “but it is still the same [person], with certain losses”. Alshammari’s text is a precious piece of literature which is also a feminist act.

It says I’m here; I exist; I won’t be silenced by society. It gives comfort and solidarity to the ones who experience the same bodily and emotional sensations of living with MS.

Caption: Shahd Alshammari, author of 'Head Above Water'

About the author

Ibrahim Fawzy is an assistant lecturer and PhD candidate at Fayoum University in Egypt. He holds an MA in Comparative Literature. His research interests include Modern Arabic Literature, Geocriticism, Culture Studies, Postcolonial Studies, and Disability Studies.

His articles, translations, reviews, and interviews have appeared or are forthcoming in ArabLit Quarterly, Words Without Borders, The Markaz Review, Modern Poetry in Translation, Poetry Birmingham Literary Journal and elsewhere.

He is currently an editorial assistant at Rowayat, and podcasts at New Books Network. His debut monograph Belonging to Prison will be published by Cambridge Scholars this summer. Pronouns: He/him/his

Social Media Handles:

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Hero & thumbnail image credit: © Hakim Alakel