1Shahd Al Shammari is a Professor of English Literature at the Gulf University for Science and Technology of Kuwait specializing in women and disability studies, all themes she addresses in several novels, as is the case of her new book Head Above Water: Reflections on Illness (2022). The publication of her book and the signing were an opportunity to meet the author in Kuwait in June 2022. Shahd Al Shammari has already published several works of fiction and academic works in the field of disability studies and gender studies. However, Head Above Water is distinctive from the previous publications, especially because of its methodological approach, which could be compared to autoethnography.

2In this interview, the scholar discusses her experience of writing intimacy through autoethnography from a feminist perspective. The intimacy discussed in Head Above Water is thus her own: by tracing the evolution of multiple sclerosis from which she suffers since the age of 18, the narration has as its centrality the problematic of the sick body. In the hands of doctors, through medical discourses, between the four walls of hospitals, Shahd Al Shammari explores the transformations of her adolescent body and experiences her first love stories while entering the academic world. The intimate, through the body, thus becomes the vehicle of her personal construction and her gender identity.

3Shahd Al Shammari highlights the tension between the realms of intimacy and the public through the act of writing. This tension is all the more acute because, in Kuwait, the act of writing can undermine local authors who write in English when they are perceived as a threat to the country’s cultural and linguistic identity. In such a context, writing the intimate becomes a political act. It can also become a politics of love when the expression of pain and anger is less important than awareness and solidarity. As a professor, the classroom is the place where such efforts can be undertaken, according to Shahd Al Shammari, even if it has its inevitable challenges.

4The interview revisits the experience of writing in the context of the Covid-19 pandemic and how the health crisis has “disempowered” academics. It has also allowed them to reinvent themselves, as is the case for S. Al Shammari, for whom this period was an opportunity to transform her writing. The interview discusses the different stages of construction of the book’s narrative and then its reception by the Kuwaiti public. The author addresses her choice of writing in English as well as her theoretical positions, strongly anchored in a literary feminist perspective. This approach finds echoes in the choice of the autoethnographic style, given its humanist foundation. The interview then addresses the issues that the status of academic may entail in the face of the difficulty of self-writing, pointing to a form of patriarchal academic ableism, and difficulty in recognizing disability studies on the academic scene. This critique, valid for both Kuwait and overseas contexts, finally serves to highlight the role of teaching for academics. It is through classroom exchanges, and the practice of transmission, that what could be rage becomes a tool for cohesion and enlightenment, in a context where equal opportunity is impacted by gender roles and where “non-visible” disability is underestimated. Ultimately, the publishing scene and the academic environment become the receptacles for the construction of intimacy through the very experience of putting it into words. Although the book was published in Kuwait, it is nonetheless a shared testimony, a point of honor that the author insists on, conscious of the orientalist gaze to which her work is subjected.

Marion Breteau: Your book follows the path of your diary entries. For how long have you been writing your diary, on which you based your book?

Marion: There’s a progression in the style, throughout the pages. The first chapter is very biographical, it’s about the past. Many times, when reading the book, I was wondering how tiring it can be to dig into the past and put all the pieces of the puzzle together, right?

Shahd: Yes, it’s tiring because you’re revisiting, and you’re revisiting very personal, subjective traumas and memories, and you also need to rely on some blog entries, some diary entries and your memory while asking yourself: “How did it go, how did it really happen?”. It was a lot of hesitancy to revisit that, that’s why there were a lot of pauses and returns again. And then, back to academic writing, which is less personal and more research-based, not about me, so I would go back and forth between the two different modes of writing, it was like academic writing was a break!

Marion: In your previous book, Notes on the Flesh, you gather different real-life stories with alias names to build a common narrative. After reading your new book, it is apparent that these stories are related to yours. In Notes on the Flesh, I had the impression that you were talking about yourself but anonymously, between the lines. In Head Above Water, you speak about yourself unveiled. Why did you decide to speak about yourself on such heavy matters, without hiding?

Shahd: With Notes on the Flesh, there were many characters, and there’s a completely fictional part, which is the second part. These were people whom I had met, women with illnesses, and yes, the names were changed for anonymity purposes. But there was an alter ego there, and that was Sarah. It was an alter ego and I used Sarah as a way to navigate, being an academic but also wanting to write openly about illness, and about trauma, and so on. But fast forward, a few years later, with Head Above Water, I realized that a step had to be larger, it had to be a bigger step into writing, into the canon. There was nothing about illness as a narrative, in the Arab world and specifically in the Gulf region. There was only one book that I had read about an academic, it was in Arabic, by Radwa ‘Ashour, she’s an Egyptian academic, she wrote a book called Heavier than Radwa in which she talks about cancer and how it is to be an academic living with cancer, the kind of stigma and the judgment she has to go through, but also it coincides with the Egyptian revolution. The book is political, and the body is seen as a political vessel. That book really influenced my thinking, in the way I looked at writing. Radwa also had a book previously which was also fiction but with an alter ego. So, similar path, I think. And so, I realized that was the next thing I wanted to do.

Marion: In the very first lines of the book, you call it “creative nonfiction”, what was the purpose behind it?

Shahd: I’m an academic so I have a lot of scholarly insights, and I’ve read a lot about illness narratives and disability studies. I wanted to put that in nonfiction to make it accessible to the general public who likes to read noncreative fiction or fiction, for people who don’t like to read heavy academic texts. I’ve also put in some works and insights, I’ve referenced them, but I thought it would make sense for it to be creative nonfiction where I can use some of the creative methods of writing like plot characterization and imagery. So, not writing in a very dry academic way, but also tell stories as they happen. A lot of people keep saying it’s a memoir, but it would be unfair to call it that. It is an illness narrative, which is a narrative that revolves around illness more than the life of a person. With autobiography, you go through an entire life. With memoir, you go through a set of events. And with illness narrative, you really go through the illness as a story, as a progression of events, and that’s what I was aiming for.

Marion: That’s a good point. Actually, I really liked the way you insert these academic references sometimes. You employ them to rationalize your experience, but you also recall in the text that it’s not the most important, instead what matters is how one is living the thing. The term “autoethnography” is also important to you. Would you say you recognize this book as such?

Shahd: I think with autoethnography what’s fascinating is that it’s a growing field putting the researchers as we always talk about, into the text. We’ve always been told to stay out of the text, we even tell our students: “Don’t say ‘I’, don’t personalize”. It’s so deeply ingrained in us that we always want to be distant and objective. This text was influenced by a lot of autoethnography readings, like Caroline Ellis, all of the authors we’ve both read, I think that changed my perspective. Before the book, I published a few autoethnography pieces, like in the Journal of Autoethnography (Al Shammari, 2020), and that really made a difference to me when I realized there was an audience for it. But it was also interesting to reflect on culture while placing your body as vessel, and at the same time there is a lot to undercover while using the ethnographic methods. I think it becomes more powerful because stories really have that effect on an audience, even more powerful than, you know, reporting the facts, which is not to dismiss of course quantitative studies or ethnographies, but autoethnography for me felt more like a feminist approach, but also very fitting for studying the body. I also realized there are no autoethnographies about Gulf women’s body or Arab bodies, very rare, I found one from a Saudi Arabian author, but that was it. There’s another scholar, Haneen Ghabra, she writes a lot of these, she writes about identity and race and academia through that, but that’s it. You don’t see that, we haven’t caught up yet with autoethnographies here. So in the book, even though I didn’t label it as autoethnography, you can see it is really the tool that’s being used without calling it that.

Marion: I do remember you saying that it was enabling you to take a feminist stance. Knowing that deconstructing stereotypes is also at the core of the autoethnographic approach, did you use that to denounce certain trends or certain practices related to women in society?

Shahd: Yes, because there’s always this idea of women’s voices as taboo, as ‘awra [subject to modesty], you know, as: “You shouldn’t speak”. From a feminist perspective, I’m also heavily influenced by Hélène Cixous, by that idea of writing the woman, writing the woman through her body, when you’re being always asked to be silent, you’re always asked to remain hidden, and in the private sphere. I felt that I had that privilege at this point of my life of being listened to, and I didn’t have it before. As an academic now, people actually want to listen to me, not all the time…! But I think there is a larger audience than before, so it was that idea that: “Now, what do I do with that voice, if that voice is there, can I write these stories?”. And it started with Notes on the Flesh. The book is the voices of women who didn’t have access to writing or didn’t have access to academia, they were just friends who haven’t ever thought about writing, haven’t ever thought about speaking in any sort of public setting. I felt I had that privilege, I wanted to carry these stories with me and I think I did it better in Head Above Water, because there are so many women in this narrative, all these circles of friendship, of support. The students and professors would have always told: “Keep the distance between you, the hierarchy”, but if you look at women’s studies or gender studies, you can always put them in a circle, you can break that boundary to establish trust and safe space. That was where I was coming from. That’s why I use Yasmeen in the book, my student, she was meant to stand in for that philosophy, that it is supposed to be about a safe space where you’re heard, so she listens to me in the narrative, but we also listen to other voices throughout. That’s a feminist perspective I think, the politics of active listening, so really listening, not dismissing, which was always, almost always dismissed… Even in academia you publish an autoethnography it’s not considered respectable, it’s not an actual article! I’ve heard these comments from colleagues, people I love and respect: “What are you doing publishing autoethnography? What are you thinking you’ll get promoted based on autoethnography?”. We’re always dismissed, really. The book is trying to not be dismissive, and I think that was also there, this feminist politics. I don’t call it that, but it is that, it is definitely a feminist politics of listening, which we don’t have.

Marion: Yes, and what is very fascinating, is that there is no anger in your book; it actually feels good to read it although it’s all about pain, and I guess it stems from this perspective you’re describing. The consequences of writing about pain in an autoethnographic style, is compiled in an excerpt from the third chapter, in which you say that literature is about telling stories, not necessarily our own, but that in any case, literature enables us to “repeat the trauma with a little more distance”. This is what the ethnographic experience allows, in one way or another, reporting the life of others to take a distance from our own. But this is not what you propose here, you actually experience “repeating the trauma” with little distance, and many times when I was reading the parts where you describe the time spent in the hospital, the treatments, the look of others, or for example when you write that it is more acceptable to think that you have hurt yourself than explain your disease to not go to sports class, I was wondering: how painful was it to write this… Was it?

Shahd: You feel safer in autoethnography. But it was incredibly painful and difficult. That’s where, if I wasn’t really committed to autoethnography and to a feminist politics of writing, I don’t think I would have done it. I see the safety in ethnography, and I respect it. I see a lot of academics, I know why it can feel safer, I’ve had conversations with ethnographers who say: “I’m not ready to be in the text, my life is not that interesting”. All these statements that they tend, I feel, to hide behind, while the truth is that it’s just safer, and safety is of course important but when you’re talking about something that is already an unsafe territory, you have to put yourself on the line. It’s a journey. I wasn’t ready for it when I was younger, and when I hadn’t approached it from an autoethnographic lens. Writing it was painful, I needed some distance, I stopped for nearly a year and I decided to pick it up again during the pandemic, because it was a painful time for everyone. It also allowed us to sit with ourselves, we don’t necessarily do it as academics, we never have time to sit with our thoughts! And we don’t sit with anyone except our students’ thoughts, and what academia demands from us. So, sitting with my pain of being outside academia at the time, made me realize that it is OK, that we have to sit with the pain to produce something better than just going through the pain. I stopped a few times but then I returned to it with a stronger determination to continue the text, if not for me, but for Yasmeen, for my mother, for my friends, for students. I feel like they need to see that in writing, which is what I felt as an undergrad, I didn’t see that anywhere in writing, it was so isolating. And I didn’t have a mentor to look up to or a professor who talked openly about her life, or about pain as a topic. We’re always told to refrain from talking about ourselves. Vulnerability is a “no go” in academia, I think, and in society in general. That also was really embraced during the pandemic, people were talking about vulnerability, academics began talking about vulnerable students, they started talking about auto-immune diseases, and how to go back to campus if we have auto-immune diseases, and how to keep the students safe, how to keep myself safe, it became a welcomed topic. To talk about pain and to talk about vulnerability really became popular even, during the pandemic! All of these calls for papers, these issues, everybody was talking about pain, and it was very much celebrated even. The pandemic made people want to publish about mortality, how the body is actually weak, the Covid can hit you, how healthy you are. So even though it was incredibly difficult for me, I also realized that there was a willingness to listen from the general public, people wanted to talk about it. I was going to go with an academic press initially. They were interested in the book, and it was hard to make that choice between an academic press or an independent press that was interested in creative writing. So I ended up really debating the pros and cons for quite a while and the conclusion was if you give it to an academic press it might be priced very differently, and marketed very differently, read by a completely different audience. I talked to so many people about it, and most academics of course said: “Go with an academic press!”.

Marion: You recently presented your book in one of the most frequented libraries in Kuwait. Such events are not that usual in Kuwait, and particularly for books that are written in English by a local writer. Could you tell me more about this linguistic choice?

Shahd: Most writers here write in Arabic, and there a few that are anglophones, some names include May al-Nakib, an academic, Laila al-Ammar, also an academic, Nada Fares, who writes young adult literature and poetry in English, and then there is… me! Most publishers here will publish only in Arabic. I recently wrote a research paper about the publishing industry in Kuwait (Kaposi and Al Shammari, 2021), and what I saw was that Arabic is more for business, what is marketable, and so what is marketable has to be in Arabic, that’s the majority of the readers over here. For me, English was the language I grew up with because of the education, because of the schools that I went to, they were American schools, everything was in English. Home was for Arabic and schools were where we spoke and wrote in English. I also grew up reading English authors mainly, which I think had a huge influence on my writing style, on me, understanding what tools to use to write. And I think English became the tool I became the most comfortable with and even more so with graduate school, being in the United Kingdom, everything was just in English. There are many attacks to write in English in Kuwait. I had heard about these attacks before, I just thought it was a myth… until it happened to me! It was at the beginning of the book signing, a very random stranger, that was just a passerby, he wasn’t even there for the book signing. He overheard me speaking, I was using the microphone and reading extracts from the book. He heard my name (hence assuming I was Kuwaiti), and he just came to say (in Arabic): “I have a comment, and I would like you to take it. You know, I’m incredibly disappointed to be seeing an academic who’s Arab, who’s Kuwaiti, speaking in English, writing in English! And the entire event is being held at a local bookstore… How is the bookstore even OK with this?”. He was incredibly angry at the bookstore and at me. Because there were about a hundred people there, I didn’t engage with him. I simply said: “OK, thank you for your comment”, to maintain the peace. I didn’t want any aggression at the event, and a lot of people were uncomfortable, I was uncomfortable, so I simply thanked him for the comment, and he insisted that it wasn’t a comment but constructive criticism, and that he was very disappointed to see this happen amongst the youth, what kind of influence would it have, as it is a betrayal of the Arabic language. Again, I only said: “Thank you, thank you Sir, now we would like to start our signing”, and I added to him: “look, there are about a hundred people waiting for their books to be signed!”. They were standing in line, and he was basically taking up space and occupying the entire event, with his anger. So, I said: “Please, people are waiting in line, thank you”. He shook in head and left, he was incredibly disappointed and upset. That was very shocking, really. It’s sad, because when you write in a language that is not your own, people expect you to represent your entire nation, your entire race, your entire tribe. It’s not true, I’m only representing one individual experience, and you don’t see this happen with a lot of white authors. They’re not representing all of America, they’re not representing all of France or all of Europe! It’s just one woman’s story, that’s all what it is. But with us, it becomes incredibly political… Even if it’s not! My language choice was not a political choice, it was for ease and comfort, it was like a first language to me, it was just very easy to access. But it was misread by a lot of people, wondering: “Why are you doing this?”. Even foreign publishers are more likely to publish works in translation from Arabic to English, but not written in English. Again, because the idea is as an Arab author, you should write in Arabic, which is a very outdated idea and it’s still very orientalist, it’s taking up most publishers’ mindset, the audience’s mindset, even people who don’t read. That day, this man was not of my readers. He just walked into the bookstore because he saw hundreds of people lining up, so he wondered what this was about, and he said: “You know, I can speak English, but I will not speak it, because it’s a betrayal of the language”. People use English differently and if it is a global language then it should be accessible to all; there shouldn’t be a sense of shame in using it. But we’re always shamed for using it. I posted a Tweet on this to describe what happened at the book signing, if you go on Twitter, you can see people arguing about this.

Marion: What about the audience? Writing in English may attract a certain type of audience, did you think about that when writing?

Shahd: Yes, I think especially with the youths now, most of them are capable of reading in English. Because I teach English literature, I see hundreds and hundreds of students majoring in English every year. And they read more than me, they read young adult literature and fantasy in English, which is a genre that is still catching up in the Arab world, that’s what they read. In the Arab world, we have children’s literature and adult literature; there seems to be still a gap between both, but they’re already there. So, I knew it would fall in the hands of someone who would be binding it for sure, and they would read it in English.

Marion: During the book signing, you received an impressive number of visitors, and a massive number of women, right? Would you say that the struggles you describe, aside from the illness aspect, are commonly shared and known by women in Kuwait?

Shahd: In the study I mentioned about the publishing industry in Kuwait, we looked at what we called “the serial readers” in Kuwait, and the majority are women. That’s something that even publishers know, it’s interesting that generally speaking, the readership tends to be mainly women. They are more likely to come to book signings, even at book fairs, you see a lot more women. The book has topics that relate clearly to patriarchy and to women’s bodies, to perfection, to wanting to achieve the perfect look, to all this heavy burden that I see my students carry for example. People are more likely to do plastic surgery in their twenties rather than older now, some are even pushed into plastic surgery by the parents, by the mother figure even if they don’t want it. There are all these stories that will shock you, of course you can’t forget social media being really part of this heavy influence of making sure that the body is perfect, the ideal female body. I think that they have all of these thoughts really, but they haven’t put them into words. There’s also awareness amongst the youth, it’s very clear. They all know something about mental health but they don’t really reflect on how it affects women differently, or how sexism is a huge part of why women are struggling with mental health, and the patriarchy is part of it too. They are part of the equation, mental health, self-care, but people, the youth can’t unravel why or where it comes from, so I think the readership, especially the women who read my book, can see themselves in it. I’m around a lot of women, I teach a lot of female students, and the majority studying English literature are women. There are a few men there, but this minority has to fight the patriarchy to study English literature. A lot of them actually go through a long journey to arrive at our department. They start with business, or something scientific and then they come back to what they actually wanted to do. I don’t think that women were my target audience only, but also male students, who read, because I see some of them do read, and they’re always shocked to see the amount of pain that women have to go through! They always say: “I didn’t know that this existed!”, or “I didn’t imagine it would be this painful! That’s not real, that can’t be!”. I think that’s their blind spot. It’s very subjective, very personal, but it doesn’t mean it’s not there. That’s the point the book is trying to do. When my publisher read it, she didn’t think it was about women, or for women, she read it as if it was a universal story, it’s for everyone, which wasn’t my intention either.

Marion: In the book, you go back to your family’s Bedouin and Palestinian origins, mentioning beauty standards through women’s hair, among other things. You explain that an ill woman is not desirable; that she would “poison the healthy bloodline”, and that “disease defies order” (p. 48). It’s also as if the female body, the female figure was subject to a nostalgic relation to the past, and as if it was embodying commonly accepted regrets that society is evolving. Would you say there’s been a shift in people’s minds on these matters nowadays?

Shahd: I don’t think there is a change. I have some students who have diseases. One told me she had epilepsy, and she was incredibly ashamed to tell me. I said: “you know you should say it because if anything happens in class I would need to know what to do!”, and she answered that she didn’t want the other male students to know, not even the female students, the male ones. The issue was that she didn’t want to be seen, or be deemed undesirable, maybe it would affect marriage prospects. And it completely does, but again when you reflect on it culturally, it’s not separate. Her gender and her body, they are not separate from the culture, she can’t just say that she doesn’t care about what men think, because it will affect her access to marriage or other opportunities. This student wasn’t Bedouin herself, but from a very privileged, upper-class part of society. So even though it seems like it’s about the tribe in what I wrote in the book, it’s not just about that. It’s the idea of family and kinship more than the idea of the tribe. During Victorian’s nineteen century in Britain, they looked at mental illness and women who struggled with any form of depression as if they would tint the social class they were in. You see it in the research, even the terminology that is used, “breed”, that’s so common and that’s interesting because that’s also here, that’s there and here.

Marion: Do you think that your society is ready to hear, let’s say, a certain percentage of the criticism you address towards it?

Shahd: I don’t think so. The book is in English, for a certain segment that’s ready to hear it. Of course it’s a big assumption, people might read it, and they might take something from it, but maybe it’s my subjective and very biased opinion that it won’t be the case. Maybe there will be some people who pick it up and take something from it. When I started doing disability studies, as a researcher, I didn’t think there would be an interest from any readers, and then I found that there was, even from students. My general assumption, and it was wrong, was that they wouldn’t be ready to talk about disability. But then I found that people started talking to me about it, and some even asked me for advice: “What if I want to study disability? What can I do, where do I go?”. They started asking me, I would be the first one they would go to. That was something unexpected, and the research is also for a certain audience but these students were picking up the articles, and someone actually told me they wanted to include this in their field of analysis. And the thing is, Head Above Water is not just a criticism of this society, for me it was an actual criticism of a very ableist society, that is ableism and academic ableism, patriarchal ableism. Not just sexism and patriarchy, for me the big thing is, and that was the aim for me: it’s a universal criticism! Something that’s really about how we look at the body in general, and more specifically the female body of course, and then the Arab body, the Gulf body. It starts from a very general criticism, and then it moves into smaller ones.

Marion: Your book seems like a declaration of love to the thaumaturgical nature of literature, its therapeutic nature. In the last parts of the book, you address the academic field. You experience all sorts of injustice, but it also seems that finding a new role, that of “professor”, and teaching to make a change in new generations’ minds, through literature, hence fiction, can be a solution for resilience (p. 101). But isn’t academia, which resonates as you write, with discipline and the capacity to produce, similarly unwelcoming for disabled people, nor women?

Shahd: Academic environments are a big part of the book. I hadn’t seen anything kind of criticizing academia for not allowing these voices and all this sense of productivity we’re constantly forced to do, constantly produce more work, and work that is fitting to the standard. You’re always feeling like you’re out of breath with academia! It is part of what really inspired me to start thinking about it: how do we define productivity, and what is a good career, a good academic career.

Marion: You mentioned at the end of the book, when addressing your teaching experience, that it taught you what you call a politics of love. It is about your friends, your circle of support, those who surrounded you in academia, about how you lived the fact of being disabled while being a figure of authority, which again is to understand in very tight relation to the fact of being a woman. You face disagreements, cultural misunderstandings from many students, and discontent from students for having a young, female professor who cannot stand up properly. But you also receive positive comments from your students. You describe how their encouragement and how the debates that you have in class, bring you love, that you consider necessary to combat hatred, to be liberated or healed. Does all that correspond to what you exactly meant by “politics of love”? This expression is fascinating, because “politics” is generally rather a world of hatred.