By Madhu Manivannan, Jia Wen Ho, Shaniah Shields and Leanne Francis
We interviewed Dr Shahd Alshammari about her book Head Above Water, which was published on World MS Day. In this interview, Shahd tells us about how it feels to give marginalised voices a platform, coming to terms with her early diagnosis of MS and how her writing is opening up conversations about disability.
Much of this memoir is framed around your mentoring relationship with a student, Yasmeen. Is there a particular reason for this?
Well, honestly, a lot of my life has been sort of framed around academia and mentorship and students and feminism. My personal definition of feminism has always been allowing this mutual vulnerability to exist between student and teacher. When I was in this position of vulnerability, I felt that I was allowed to actually show a different side of myself, rather than put on this kind of performance that so many women feel obligated to, of having everything under control. That seems to be the only way you get to be taken seriously, which I think is a myth and drives us away from forming friendships and connections. Yasmeen is one of my students who was there for me at a very difficult time in my life. That’s when I really began to think, “Okay, what do we do with feminism that actually wants to include friendship and sisterhood as part of our mission rather than these rigid boundaries between student and professor?”
I really like the way Head Above Water was written, like in a stream of consciousness. Is there a reason why you choose to write it in this way?
I have to admit I'm very heavily influenced by modernist writers, especially Virginia Woolf, one of the most important feminist writers who used stream of consciousness and interior monologue. For me, whenever I read a book that has an internal monologue, it breaks boundaries between writer and reader. And I felt really connected to the characters, like I was invited in. I didn't want the book to feel distant to you because I'm a reader more than anything. I wanted the same feeling transferred to the reader, so that you would also be swimming with me in the thought process. The technique is also playing on the title, Head Above Water. We are in water, swimming in these thoughts. Stream of consciousness is basically a river of thoughts, a process of figuring out. Where do we go from here? Are we going to have a clear destination and ending?
You represent the lives of disabled Arab women who have to navigate life, including discrimination, in the context of disability. How did it feel to give these marginalised voices a platform?
A lot of people are asking this question, you know, you're representing the lives of disabled women, but there's so much variety when it comes to different disabilities. What I was really trying to do was knock on the door of the publishing houses, of readers, and say there’s an experience here that we don’t see much of, we don’t see in the media. We barely see anything that has Brown or Arab disabled women. It’s so hard to see them anywhere. I really wanted this to be another perspective that opens up the conversation so that more publishers and writers start to think that maybe we do need to open it up a little bit. When it comes to Arab disability fiction or nonfiction, there isn’t much out there. It actually isn’t a genre on its own. You really struggle to find representations of illness and if you were to find them, they would be written by male authors. If there’s a disabled female character tossed in there, she’s usually disabled because of something bad she did. So disability seemed like a punishment for something she’s done, more like a metaphor and not these real lived experiences. I’m a literature scholar and I was trying to find any sort of representation not just for me, but also for my students. When we want to read about Arab women or Brown women, I want to make sure disability is there too. So I think a big part of it was just trying to get the conversation started, rather than represent them. I want more voices to come in. I think that was really important for me that other people who also live with any condition, whether it be autoimmune or a mental illness or physical disability, know that we’re out there and these voices are interesting to learn about rather than just being a metaphor.
Head Above Water deals with the stigma and shame associated with disability in Palestinian and Bedouin cultures. Do you feel that your writing is part of a shift in these attitudes?
I really would hope so. To a larger extent, in Arab communities, there is a lot of conversation about mental health now. But when it comes to invisible disabilities, or autoimmune conditions, and especially when it comes to women's bodies, it's still very hush hush. It is considered shameful to claim anything that is not considered a “perfect female body.” So I hope it changes at least some of the thoughts out there. I do it on a very small scale. I have a small space where I talk about it in class and my writing, which then reaches readers. Sometimes, they're struggling with an invisible disability, and they'll say, “You know, that made me feel like there's nothing to be ashamed about.” If at least one student or one reader says that, I feel a sense of relief, because I wish I had someone say that to me. I'm excited to see where this goes from now and I feel like it's so long overdue. It's 2022 and we're still struggling to talk about something that's a part of the human condition. One day, you might wake up disabled, or you might wake up suddenly ill. Yet disability is ignored by so many media outlets, even though we're more likely to experience it and have that in common than anything else.
I enjoy the way you explore coming to terms with your early diagnosis. If you could speak to your body as it has changed over the years, what would you say?
I think I'd say more self-care. Self-care has been tied to this culture of guilt and shame and I think, as nurturers, as women, we're always told to do more, care more, give more for others, but there's not a lot of self-care. Since I’m still teaching and always around students, I see a lot of this guilt and lack of self-love. I think the older generation, or teachers and family members, don't tell the younger generation that it's okay. There's more of a culture that the younger generation is ‘selfish’, too self-absorbed. But with all of the difficulties we face, especially in a very racist, sexist and ableist world, in order to survive, you really need an extra dose of self-care and self-love. Otherwise, it gets dark. So yeah, I think more self-care would definitely be it. I wish I had someone say that to me.
The world needs to hear more stories from disabled writers and to have more stories with disabled protagonists who are not existing on the margins. Do you have any advice for disabled writers?
It’s so hard to get an agent to look at your work as a disabled writer, or to get a publisher to consider it, especially if you’re disabled, Brown and a woman. I think the people who have that kind of power, policy makers, publishers, journalists, and people who can make a difference can listen more and writers can pitch more. I always say keep pitching, keep trying. For disabled writers, there are specific publishers who are interested in own voices and may be more open. Sometimes the big publishers are not open to these kinds of narratives, but the small independent publishers are open to them and from my experience, I think I got pretty lucky. These independent publishers want to make a difference and may have the same feminist agenda, they’re disability allies. It is my hope that there’s a bit more acceptance of these kinds of narratives and that agents are looking for these narratives.
Can you talk about your journey to publishing Head Above Water?
The whole journey to getting published was way harder than I thought. I tick the boxes of being a disabled woman, living outside of the UK and US, so I’m very much disconnected. I'd be harder to have over for events, which really makes me think about accessibility. With COVID-19 I had a twist of fate. There were a lot more virtual events open to authors situated abroad, but I did still have a long journey of rejections. A lot of times I was told that it seemed “too specific” of an experience which baffled me because with disability, it is something that can happen very randomly. I was quite disappointed with the publishing industry but when I got Neem Tree Press to consider it, I was shocked that there was someone willing to listen. Neem Tree Press is very much about international literature, about representation and diversity, and not just as a term but rather an actual activist and feminist way of looking out for these voices. I think that gave me hope – that there were people out there after a long, disappointing journey. The book finally found someone to pick it up. I still can’t believe it’s out there.
You can find out more about Dr Shahd Alshammari and her fascinating work on her Twitter account and website. More information about her memoir, Head Above Water, published by Neem Tree Press, can be found here.