There has never been a greater need to hear directly from chronically ill and disabled people. Even before COVID-19 changed the reality we live in for the short term, we were fighting off the ever-encroaching restrictions to minimize the benefits we meet the entitlement to collect, or worse, mark us fit-to-work, a qualification that is practically meaningless when you consider that most people’s designation is reversed when a third party assesses the same circumstances at tribunal. Disabled people are twice as likely to live in poverty as their able-bodied counterparts, and while COVID-19 turned the world upside down, disabled people are somehow still at the bottom of this world, with six out of ten COVID-19 deaths in the UK being disabled people.
Thankfully there are still publishers and arts organizations that realize we need to hear more about the reality of how people with conditions and impairments navigate the world. In 2020, the Michael Marks Award-winning Emma Press released their Anthology of Illness, edited by Amy Mackelden and Dr Dylan Jaggard. Both editors have vital experience in their area, with the former living with multiple sclerosis, PCOS, and anxiety, and the latter having experience with mental health, an important aspect of illness that is often omitted from classifications of illness and disability.
One of the strengths of this book is not only the quality of the thirty-three poems presented, but also how “illness” as the central tenet of the book gathers such a wide variety of conditions and experiences towards it. Whether it’s COPD, Crohn’s disease, or Ehlers-Danlos syndrome, a lot of the details of these impairments and conditions in the book are not yet fully sunk into the public consciousness, and while “invisible illness” is a misnomer I always feel a bit nauseas to write down, it is the fact that a lot of these experiences aren’t as immediately visible or understandable as other disabilities, that lends the anthology a particularly special character. Between our understanding of severe physical disability and complete abledness there is a wide and varied wedge of experience that we hear very little of. In this anthology that stigma is lifted, and while the poets feel like they are partly speaking to each other in an understanding about the medical gaze and the ambiguities that need to be balanced on a daily basis, it is a privilege for the reader to receive the understanding the poems bring forth.
I was delighted to speak with the editors of The Emma Press Anthology of Illness, Amy Mackelden and Dr. Dylan Jaggard, via email and video chat, to discuss why, now more than ever, we need accurate representations of disability and chronic illness.
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The Rumpus: First, can you tell us a bit about both of your backgrounds, in terms of what you’ve been involved with before the Anthology of Illness?
Amy Mackelden: Before I was diagnosed with multiple sclerosis in 2013, I was establishing a career as a performer, having made two spoken-word theater shows, and co-founded the poetry magazine Butcher’s Dog. My health changed my trajectory. I’m passionate about disability rights, and lifting up the voices of chronically ill people. Day-to-day, I’ve been a journalist for the past few years—I write about the Kardashians and the royals for money.
Dylan Jaggard: My background is in philosophy, but I’ve always had an interest in literature and aesthetics. I’m particularly interested in German philosophy and poetry. I have a history of mental health issues and have spent time in psychiatric care.
Rumpus: Why did you and The Emma Press feel a book like this is important to bring into the world? What did you want this book to achieve?
Mackelden: I pitched the book to Emma Dai’an Wright at The Emma Press several years ago. I’m a big fan of her aesthetic, and everything she publishes is beautifully illustrated. The initial pitch was about illness in general, but over time, we decided to focus on lived experience, disability, lifelong conditions, life-changing events. I live with anxiety, but when Dylan came on board as co-editor, he helped steer the collection to make sure it accurately represented mental health conditions, too. Essentially, we wanted the book to show what life is really like when you’re disabled or receive an unexpected diagnosis. Representations in the press and media usually lean into one of two narratives—desperately tragic or inspirational. We wanted to show the reality, and elevate the voices of a minority that’s rarely taken seriously in many industries.
Rumpus: Anyone who has ever given a call out for an anthology knows one of the most anxious parts of the process is waiting for work to come in, hoping you get enough quality to make the best book you can. What was this like for you, and how did it feel to get such a wide variety of experiences explored through the poems you received?
Jaggard: We had a fantastic response and, if anything, it wasn’t a problem to find good quality material. The main problem was narrowing down the selection. I think we managed to get a good balance and a variety of perspectives.
Mackelden: We wanted to make sure that each response was authentic, and coming from a place of experience, rather than telling other people’s stories. We were seriously overwhelmed with the submissions we got, and read close to a thousand poems, most of which were written by chronically ill and disabled people, or people with real-life experience of the situations they were writing about.
Rumpus: You mention that you wanted to make sure the responses were “authentic.” I’ve noticed that call-outs for work about disability can often result in abled people sending work in where they either “imagine” themselves to be disabled, or they talk for the disabled people they give care to. Did you receive any poems of that ilk, and why do you think this seems to happen with disability in particular?
Jaggard: Yes, we had a lot of perspective poems from carers, family members, writing about how they were affected by someone else’s condition. But one of the central tenets we had for this was that the poems should be written from the point of view of the person who has the condition. We wanted to give voice to people who are often spoken for.
Mackelden: Dylan and I have a lot of discussions about how the disability conversation feels miles behind other minorities. Representation on screen and in the media is still sorely lacking, and disabled people are often left out of the conversation altogether. Sia’s directorial debut Music, which has been widely recognized as an ableist depiction of autism, is still being defended by its stars. Until ableism is taken more seriously, and seen as one hundred percent unacceptable, we need to strive for authentic representation, and give chronically ill and disabled people the opportunity to tell their own stories. Otherwise, we run the risk of disability merely being an Oscar-baiting plot point, or an inspirational sob story for the benefit of able-bodied audience members.
Rumpus: When you talk about the Sia debacle and “authentic representation” you remind me of the simple but comprehensive tenet of disability rights, “nothing about us without us.” Is this why it was important that two people like you, with your own experiences of disability and illness, edited this project?
Mackelden: It seems as though that tenet is still so often forgotten in projects about disabled people. And yes, absolutely. I’d been writing about my own experiences with MS, and knew that I wanted to elevate disabled voices. And by asking poets to put their trust in us, we needed to make our own connections to the work, and the disability community, clear. When Dylan came on board, it was a unique opportunity to encourage a mental health discussion that included men. Per American Foundation for Suicide Prevention, in 2019, “men died by suicide 3.63x more often than women,” with the rate of suicide reported as being highest among middle-aged white men. It can be difficult to talk about illness of any kind, so between us, we hoped to encourage a wide and varied conversation.
Rumpus: As I work my way through the anthology I find poems about a breadth of experiences including mental health, COPD, Crohn’s disease, and eating disorders. I’m always surprised by how different they each are, but how so many common sites seem to be circled again and again in terms of stigma, accessibility, and the failures of the medical establishment. Were you surprised to find these shared threads running through such a variety of poems?
Jaggard: The interesting thing for me was the fact that a lot of the poems were about other people’s reactions to an individual’s condition. That could be family members, society in general, but also the medical profession. The “medical gaze” in particular was a theme that recurred, and this was very interesting.
Mackelden: I hadn’t really realized before Dylan flagged it that illness is often viewed through a medical lens, which is why it was so exciting to read poems that flipped the “medical gaze.” I didn’t expect so many of the poems to reclaim a patient’s power, and objectify the doctor or medical practitioner as a result.
Rumpus: While there thankfully seems to be more funding and enthusiasm for exploring racial inequality since the Black Lives Matter movement spread, disability issues seem to be something media outlets and funding bodies haven’t yet got behind in the same way. In an ideal world of unlimited funding, what are the kind of projects you both would love to kickstart and run with in regards to disability, illness, and mental health?
Jaggard: I particularly enjoyed being able to give a voice to a wide-range of health conditions, including mental health issues. In the future, I hope illness and disability is taken more seriously.
Mackelden: I’d love for there to be realistic representations of disability, and that means disabled people being offered roles that have nothing to do with disability. Why are we only involved when someone wants to tell a “health” story, or an inspirational tale? Why can’t we be the lead characters in sitcoms, for no reason other than that we’re people, too?
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Photographs of Amy Mackelden and Dr. Dylan Jaggard by Laura Hol.
