Head Above Water: When illness exiles the mind from the body

Few, if any, illness narratives written by Arab women exist in the world of literature. Women of colour continue to face racial bias when it comes to being believed by medical professionals, and barriers when it comes to pain assessment and pain management.

This makes Kuwaiti academic and writer Dr Shahd Alshammari’s newly released book Head Above Water, a reflection on her life with MS (multiple sclerosis), a welcome addition to the genre of illness narratives written by women of colour.

"I have read so many illness narratives but I haven’t read anything that is Arab or written by an Arab woman"

Dr Alshammari is only in her mid-thirties, so you may wonder why she has chosen to reflect on her life so early on.

Speaking to The New Arab Dr Alshammari says, “Because of my early diagnosis with MS, I felt it was the right time to reflect on the past almost twenty years or so of living with the illness.

"I have read so many illness narratives but I haven’t read anything that is Arab or written by an Arab woman. I’ve always been very aware of time living with MS and I was given a sort of expiry date from many neurologists saying with MS you might not live past thirty. I have also been told things as you might actually not be able to write later on, you might not be able to teach, it is a progressive disease, so with that kind of sense of impending doom, or the clock ticking, I felt it was better now than never.”

Adamant that her book is not a memoir but rather a reflection on illness, Head Above Water draws the reader in with its poetical and soothing prose that addresses the reader as if they are a confidante.

Each chapter begins with an excerpt from Dr Alshammari’s past journals as she speaks to her ex-student and close friend Yasmine about disabled bodies, relationships, love, language, and identity.

"In Arab societies, a woman writing and sharing what is personal is still considered a bold move by many, particularly a woman writing about her disability and illness so openly"

In this way, the reader feels as if they are being invited to listen to a narrative that is deeply personal. In Arab societies, a woman writing and sharing what is personal is still considered a bold move by many, particularly a woman writing about her disability and illness so openly.

However, Dr Alshammari views it as an individual effort to provoke a conversation that many in the region are still hesitant to have.

Stigma still exists in Arab societies regarding how people with disabilities and chronic illnesses are perceived and spoken about.

Those with disabilities are still looked upon as incomplete humans. Negative attitudes toward disabled people prevail in Kuwaiti media and are even illustrated in Kuwaiti musalsalaat or soap dramas, something that Dr Alshammari has researched.

In Head Above Water Dr Alshammari delves into Kuwaiti society’s prevailing perceptions of people with disabilities and chronic illnesses according to her first-hand experience and goes further to explore how disability relates to the concept of shame.

“In a lot of Gulf countries, and in tribal culture, they really place a lot of value on the reproductive value that women have, so when a woman cannot have babies or cannot actually function as completely abled bodies, there’s this sense that you’ve failed as a woman, there’s a sense of ideal femininity and because you’ve failed, shame then comes hand in hand with that,” explains Dr Alshammari.

“I realised it’s not just my father or just Kuwait, but it’s everywhere, this idea that if you have a failed body as a woman then there’s shame and stigma that comes with that too, and I felt that was something that not only that I wanted to mention but I wanted people to come and reflect on this idea of shame, and how it actually expands beyond just sexuality and virginity, but also on ability and disability.”

"I realised it’s not just Kuwait, but it’s everywhere, this idea that if you have a failed body as a woman then there’s shame and stigma that comes with that too"

As a woman of Kuwaiti-Palestinian ethnicity, Dr Alshammari draws important parallels between the hybridity of her identity as a mixed-race woman and the hybridity of her illness.

“For me, hybridity is about this mixture, even with MS I feel like it’s a hybrid disease. So that sense of wanting to balance it is really to be in harmony and kind of gracefully accept all these different parts that make up my identity so to speak. It’s about allowing myself to live in a state of hybridity,” says Dr Alshammari. “It’s the same with MS, allowing myself to live with what sometimes looks like an invisible disability and sometimes to be using the cane.”

Another way Dr Alshammari finds similarities in her experience with being of part-Palestinian heritage and her illness is in the experience of exile. In her book, she reflects on the physical exile of her Palestinian relatives from their home and the mental state of the exile of her mind from her body as a result of her illness.

“I started thinking yes, the body itself can be something that I feel exiled from; it’s supposed to be the place I feel most at home, the place I feel safe, but what happens when I feel disconnected – the mind is disconnected from the body, the body is doing its own thing, and the mind is trying to communicate with the body but there’s a breakdown in communication,” she explains.

“There is a horrible sense of loneliness and isolation in exile and I’ve witnessed that first hand, especially with the Palestinian diaspora, so I feel like exile is a term we constantly tie to the diaspora, but not to the disabled body. I feel like there’s a lot that can be expanded on when it comes to illness and disability as being so sudden – you are kicked out of your home. To be exiled from it is a very complicated state, a very hybrid state of being.”

Kuwait and the wider Gulf region have made great strides to make sure that its citizens with disabilities and chronic illnesses are financially and practically cared for – disabled citizens get free state healthcare and access to disability pay is relatively easy. Quotas now exist to ensure that companies employ people with disabilities, and increasingly buildings have accessible facilities.

"I feel like there’s a lot that can be expanded on when it comes to illness and disability as being so sudden – you are kicked out of your home. To be exiled from it is a very complicated state, a very hybrid state of being"

But when it comes to understanding invisible disabilities and illnesses Dr Alshammari says this is a concept that is relatively new to the society. In her book she goes as far as to say she felt a sense of imposter syndrome at times, dealing with a condition which on the face of it at times was invisible as she did not always require a walking aid.

“I feel like this is something that needs to be addressed in the media, I still get a lot of attacks, not just for using the disabled toilets but when I park in the disability parking – I get a lot of looks, sometimes comments, sometimes questions from random strangers, so it is a sense of constantly being on guard, especially if you are living with an invisible disability. I feel like this is a blind spot for them [society] which is super interesting.”

The introduction of women's studies to the Gulf in recent years has been greatly welcomed by academics in the region including Dr Alshammari who is well known for her work in women's studies as an area of study. One discipline that has yet to be introduced to universities in the Gulf and which she stresses is greatly needed in disability studies.

While Dr Alshammari admits she has tried to incorporate it into her own syllabuses in the women's studies and literature courses she teaches at university, students are yet to have the option of taking a disability studies course or specialising in it as a degree.

“Disability studies as a course needs to be included in all different disciplines. I feel like it is as basic as saying you need a course in human rights. There is some sort of change when it comes to classes in women’s studies, you see that now, but the area of disability studies is still not there at all, which I am struggling to understand especially when it comes to the sciences,” says Dr Alshammari.

“Everything starts within the classroom, then it moves onto political campaigns, the media and so on. The individual effort could make a huge difference, and colleges and universities if they start adopting that framework then it becomes normalised and then it becomes something that you learn about and you actually help advocate for change outside of the classroom.”

Head Above Water is out on 30 May 2022, World MS Day, and is published by Neem Tree Press

Yousra Samir Imran is a British Egyptian writer and author who is based in Yorkshire. She is the author of Hijab and Red Lipstick, being published by Hashtag Press in the UK in October 2020

Follow her on Twitter: @UNDERYOURABAYA