- Notes on the Flesh by Shahd Alshammari
Readers of the Journal of Literary & Cultural Disability Studies may be familiar with Shahd Alshammari from her comment from the field in 2016 where she notes the lack of “scholarly attention focusing on Eastern perceptions and understandings of disability,” particularly when it comes to “lived experiences of women with disabilities” (Alshammari 361). Notes on the Flesh is a collection of stories that seeks to redress this phenomenon by exploring what it means to be a disabled “Eastern woman” using Alshammari’s experience with multiple sclerosis (MS) as a starting point. However, this is not a straightforward personal story. The prologue describes it as “part-memoir, part-illness narrative, part confused, part confusing, partially fabricated, partially the truth” (iii). Memoirs’ truths are often scrutinised but Alshammari clarifies that any fabrication is because “her memory fails her,” as her body has failed her (loss of memory is one of the symptoms of MS). The book consists of two parts: Mythography and Voices of Lovers. Alshammari calls her text “biomythography” (iv), a term Audre Lorde coined while writing Zami: A New Spelling of My Name, to refer to fiction built of many stories including biography, history, psychology, and myth (Hall 99). The title “Notes on the Flesh” also echoes Jeanette Winterson’s novel Written on the Body that equally explores the links between illness (leukaemia in that case) and love.
Notes on the Flesh starts as a coming-of-age narrative focusing on Sarah’s relationship with her family and friends throughout high school in Kuwait. There is a lot of emphasis in the early chapters on identity: on people, including the narrator, who are considered outsiders, foreigners or, in Alshammari’s term, “hybrid” (9) and the societal stigma that comes with that. Sarah’s mother is Palestinian and her father has a Bedouin background; as a result, and especially after the Iraqi invasion of Kuwait and the expulsion of thousands of Palestinians from Kuwait, she is not allowed to mix her parents’ dialects in public (8). Her feelings of not belonging are exacerbated when she is diagnosed with MS—Alshammari names intersectional oppression when she lists the different ways she is marginalised or othered in her community: “I am a [End Page 249] woman, a tribal woman, a hybrid, a disabled woman” (9). Challenging these “lacks,” she seeks to embrace “multiple identities” (9), a lesson her mother instils into her from a young age.
The first symptoms of MS—namely numbness and blurred vision leading to the nickname “Blind Girl” for wearing an eye patch (27)—come when Sarah is going through an emotionally difficult experience; her best friend Salma shuns her without any explanation (what turns out later in the book to be a misunderstanding) telling her, “Sarah, you are evil” (24). Susan Sontag has powerfully argued that myths and psychological theories about illness end up “placing the blame on the ill” (58). Sarah is made to feel as if she deserves her illness as a kind of “karma” (51). She spends “years hearing that verdict that I was evil” and searching for answers as to why she was diagnosed with the disease (51).
In her blog documenting her disability and other work, Alshammari has noted the importance of raising awareness about an “invisible” and misunderstood condition like MS. Illuminating lived experiences, Notes on the Flesh associates MS with the feeling of being “trapped in someone else’s body” (34), and compares some sensations to “walking on air, and no, that was not half as pretty as it sounds” (42). It takes us through interactions with doctors who make Sarah feel invisible or tell her that she should not bother pursuing an education (labelling the condition “degenerative”) and with others who persist that she is young and therefore cannot have MS (Sarah feels accused of lying in those cases; similarly, when she slurs her speech she is accused of being drunk). Having an MRI while verses from the Qur’an are playing to cover the machine’s loud noise in one...