Jarred McGinnis: “You don’t have to be disabled to write about disability, but you better get it right” | fiction


AAs an author with a visible and physical disability, it was inevitable that I would be asked to write about disability in the literature – I am a paraplegic and a full-time manual wheelchair user, for those who count the points . When I had my spinal cord injury over 20 years ago, I didn’t wake up with a doctorate in disability studies, but was introduced to a menagerie of troubles and prejudices from from people and architecture, which has certainly been an education. It should also be noted that Disability is a Catholic Church, of which we will all be a member at some point in our lives.

One of the most difficult and surprising lessons I have learned is that as a person with a disability you do not have the final say on who you are. It depends on those around you. It’s maddening to deal with on a daily basis and much more difficult than the lack of accessible toilets. This is one of the themes of my novel The coward, in which the life of a young man is turned upside down by a car accident. How do you resolve the dissonance between how you are seen and how you see yourself? This is something that 2016 See red by Chilean writer Lina Meruane, about a woman losing her sight, is doing incredibly well.

The poet Raymond Antrobus explores themes similar to my work – masculinity, disability, family – in his 2018 collection, Perseverance, but achieves its impact without all the extra and narrative details that a prose writer is forced to include.

I don’t choose to read a book because it has a disabled nature: at best, it doesn’t tell me anything about the story and at worst, I know exactly what kind of story I’m going to read. However, I understand that representation is important, and one of the elk for The coward came to see nothing that resembles my understanding of the disabled experience in fiction. In writing it, I sought to undermine the mundane trope of “triumph over adversity” with humor and honesty.

I grew up in Florida and Texas, and the southern literary tradition is full of stories of the marginalized. In a 1960 essay, “Some Aspects of the Grotesque in Southern Fiction”, Flannery O’Connor explained this was because literary orthodoxy relied heavily on stories of “men in gray flannel suits,” when the Southern writer knows these men are the real grotesques. In the 1955 O’Connor story “Good people from the country, Hulga lost her leg in a hunting accident when she was 10 years old. I don’t see a problem with Hulga’s vulnerability to the hands of a preacher ripping off prostheses; the struggle between power and family dynamics in history has never made me question O’Connor’s portrayal of disability. Hulga is a fully realized character drawn by the hand of a 20th century master.

I also love the 1940 Carson McCullers novel The heart is a lonely hunter. Its protagonist John Singer is the deaf mute on whom the other characters project what they need – if there is a perfect metaphor for disability in the able, this is it. This novel captures the sadness and isolation of marginalization like nothing else I have read.

“Perfect Metaphor”: Alan Arkin and Sondra Locke in The Heart is a Lonely Hunter, 1968 Photograph: Everett Collection Inc / Alamy

While not a Southern writer, and not exactly on disability, Katherine Dunn Geek love (1983), presents main characters whose rejection of normality as desirable resonated before and after my life in a wheelchair. There are certainly no “men in gray flannel suits” at the heart of this book. This is the story of Oly, a hunchbacked albino dwarf, who tries to outsmart the devious Arturo, a boy with flippers for his hands and feet, who initiates a cult where the faithful amputate their own limbs. At one point Arturo reportedly said, “I have a glimpse of the horror of normalcy. Each of these innocent people in the street is engulfed in the terror of their own banality. They would do anything to be unique.

Life literally threw me under the bus, but I got up and prospered. Those who do not have a disability seem to me to be children, innocent but inexperienced. They’re worrying. They fear life with a disability and don’t know if they have the strength. I don’t doubt it anymore and it gave me the courage to do things that I might not have done if I hadn’t faced life in a wheelchair. I’ve always been surprised at the vehemence of the response every time I say this, and I think it goes to the heart of people’s insecurity. They take it for granted that they are better than the disabled, and it comes to mind when you suggest otherwise.

For example, our family recently moved from the UK to Marseille. Why not move with your wife and two young children to a country where you don’t speak the language during a pandemic? Well, Brexit, the rise of teleworking, real estate prices, the sun and the sea, to name just a few reasons, but above all, because it didn’t scare me. Compared to a traumatic spinal cord injury, it was going to be easy. After our move, I came across a cultural city tour that included works by Claude McKay, the Harlem Renaissance writer. His novel Romance in Marseille was written in the early 1930s and left unfinished. It was only published recently. It is an African, Lafala, who obtained a settlement because of the negligence of a shipping company which resulted in the amputation of his legs. The fact that her disability is less of a hindrance than her darkness indicates a more nuanced and intersectional understanding of disability, race, class, gender, and sexuality than many recent books openly linked by their identity politics.

My family is limited by my disability. There are still a shocking number of places I cannot go. Two contemporary books which give an honest portrait of a family with a disabled member are Owl song at dawn (2015) by Emma Claire Sweeney, who examines how the perception and care of individuals has changed over time while telling a great story about sisters, and The old king in his exile (2017) by Arno Geiger, which is a dissertation on the author’s father developing Alzheimer’s disease. As I said, at some point we will all have to deal with disability. The truth that emerges from these novels is – and it seems ludicrous to have to write this down – that most families will do anything to make sure their loved ones are well and included.

pillow (2008), the first book in an Adam Mars-Jones trilogy, follows in exquisite richness of detail a young boy, John Cromer, with Still’s disease, a severe form of juvenile arthritis. For the first third of the book, he is in bed and dependent on his parents. Yet it is full of agency. Mars-Jones did a masterful job creating a classic coming-of-age story using the sheer force of voice alone. There is a point in the book where he describes a banana so perfectly that I realized I didn’t have really noticed a banana before. It’s also full of wicked humor – especially one scene, where the young boy, who is gay, hears the facts of his mother’s life and is horrified by what he’s told.

You don’t have to be disabled to write about disability, but you had better get it right. As far as I know, Mars-Jones is valid, but through his art he created a living character full of ideas about himself and possessing a disabled body in a world openly hostile to such bodies. The same goes for non-fiction works such as the 2005s The life of the dwarves by Betty M Adelson, a tender and comprehensive social history of the subject, or the most recent Tell me the planets by Ben Platts-Mills, in which a valid author describes sensitively the challenges faced by people with brain damage during the UK’s austerity program, which appears to be designed to harm the most vulnerable in society.

When I was in the hospital, David Foster Wallace’s 1,000-page tome, Infinite joke, which had just come out in paperback, appeared one morning on my bedside table. Someone had very thoughtfully understood that I would often be in bed. The book’s contiguity between melancholy and humor still resonates with me, as does its understanding of the complexity of depression and addiction. I suspect Foster Wallace had a less nuanced understanding of physical disability, but I appreciated his Quebec radicals, the Assassins of the Rolling Armchairs or the Wheelchair Assassins, who terrorized the main characters. In the hospital, completely dependent on others, he was hopeful to envision an all-powerful obscure cabal of wheelchair-bound men.

Characters with disabilities can be angry, pitiful, depressed, a problem for someone else, or wanting a cure. The problem comes when it is all they are. It is essential to have access to stories where characters with disabilities reflect the experiences we have rather than the experiences we are supposed to be limited to.

Jarred McGinnis Coward is published by Canongate (£ 16.99). To support the Guardian and Observer, purchase a copy at guardianbookshop.com. Delivery charges may apply.



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