This is a very personal review, because when you have a disability it’s impossible to read a collection of stories about bodily difference and it not feel personal. I was diagnosed with Multiple Sclerosis in 1995, but originally broke my back at 11 years old and after years of pain developed Myofascial Pain Syndrome and disc degeneration. Disability and difference have been part of my life for so long but yet I never feel fully part of that world. That’s because my disabilities are usually invisible and I don’t really belong in either world. I even read this while struggling with my health and finally catching COVID. I’m typing up my review while in bed after a radio frequency denervation, where a heated needle is guided towards the compressed nerves and burns them to disrupt the pain messages that refer nerve pain to my legs and lower abdomen. All this goes on behind closed doors because I’m simply unable to get up and out. Then when I can go out, I appear to have very little wrong with me unless I’m using my stick or a crutch. I’m doing what’s called ‘passing’ – able to look like everyone else while having disabilities. So it’s hard to put across how moved I was by this collection portraying ‘otherness’ and how able-bodied people respond to it. Using mythology, fairy tales and a touch of Shakespeare, Lottie Mills has managed to put across so much about life with a disability and what happens when it brushes up against an able-bodied society that’s considered the norm. However, in her world these disabilities become abilities, sometimes magical ones.
The first story in the collection introduces us to a magical island where Cal and his daughter have a beautiful life of warm sand, sea and a night sky glittering with stars. He tells her stories about bear people and she asks him if they are bear people? Yes they are he says, although her mother wasn’t. She was from a human world that’s about to clash disastrously with theirs. In the human world, there’s so much that Cal can’t do because it isn’t set up like their island. In the human world Cal becomes disabled. We then see what happens when human agencies come up against their little family with disastrous consequences. Instead of concentrating on what he can do, they look at him through the prism of their own abilities and only the things he can’t do. How can he possibly look after his daughter properly when he’s so disadvantaged? Mills takes disability theory here and applied it to her character’s lives, which judging by the name Cal (Caliban) come from the type of magical island Shakespeare describes in The Tempest. Caliban has been more recently portrayed in productions of the play as a black man, a slave, or an asylum seeker rather than a monster. Mills makes the point that Caliban is only a monster when we make him one. The original model of disability is a medical one that assumes there is one ideal healthy body and anything that differs from that is wrong and needs to be fixed. When used in a social context it tells you that the things you can’t do in the world are down to your difference from the norm. However, the social model tells us that it is the way the world is set up that creates the disability. For example if all buildings eradicated stairs, creating ramps and lifts within the normal building model, the environment becomes accessible to all. If Cal is viewed in his own environment, he is capable of looking after his daughter. I was desperate for them to be reunited and I also felt a personal yearning to be part of Cal’s world. This fairy tale explains that while agencies like social services and the NHS might think they are doing the right thing for someone, there is often a better solution. That solution champions individuality and concentrates on what the person can do, rather than what they can’t.
In another story we meet a young disabled woman who craves the perfect pain- free body, something I could definitely identify with right now. However, when her wish is granted she finds it difficult to let go of her disabled identity. This was a fascinating exploration of how disability affects the person psychologically. If a disability is innate then it’s the only body that person has ever known. They know the world’s expectations of that body, their own perception of what they might achieve within that body and how able-bodied people perceive them. If the disability is acquired it can be a long and painful process to come to an acceptance of your new body. You must grieve the body you have lost, as well as all the things you expected to do with that body. I have heard many friends tell me that while they’d happily give up chronic pain or a particular aspect of their disability, they wouldn’t want to go through a reverse change and be able-bodied again. There is even a fear of becoming able-bodied again, with all the expectations that places on a person. This story perfectly encapsulates that fight within the self and how far our disabilities are assimilated into our idea of who we are. I loved Lottie’s use of horror and settings where disability has often found a home such as the circus or fairground. Freak shows were popular in the 19th Century, in both the UK and USA, with different bodies placed on show for entertainment and wonder. In fact Coney Island in New York was a hugely successful venue for such shows, where businessmen and entertainers like Barnum were making money from the display of people with differences and disabilities. It certainly wasn’t the wonderful musical extravaganza portrayed in The Greatest Showman. However, it was a place where someone with a disability could make their own money, live in a community where difference was appreciated and accommodated and achieve a level of fame. She lets us know that these issues are complex and look very different from person to person.
There is a beauty in this world of ‘otherness’ and it’s a world made up of an incredible mix of ingredients. Every person with a disability is different so the variety of experience is endless and hybrid bodies, unusual pairings/families and queer love thrives here. Lottie has found a way of balancing how the world sees us and how we see ourselves. She has used magic realism and alternative communities to show the strength there is in accepting disability and making a life with it, rather than constantly fighting to change yourself and remain in the able-bodied world. What was the most interesting thing to me was her understanding of how these issues affect the world of writing and how there are accepted narrative tropes around disability. I studied for a PhD, sadly never completed, where I was looking at how disability is portrayed in autobiography and memoir and whether this was driven by an author’s internalisation of society’s expectations or whether the publishing industry is biased towards narratives that are acceptable to able-bodied readers and they know will sell widely. The public like people who battle against their disability and illness, preferring words like ‘fight’, ‘overcome’ and ‘survive’. The accepted narrative trope is that of a journey from the dark days of diagnosis towards the rehabilitation and a triumphant ending of cure or a successful life, despite the disability. Often people with disabilities read these narratives and feel inadequate for struggling, for not achieving a similar level of ability and success. Mainly they don’t feel represented. Here Lottie shows us these stereotypes and gives us something different – individuality, community and love. Her narratives don’t follow the accepted tropes, instead focusing on acceptance, owning a disability and living with it in a way that works for the character rather than an able-bodied reader. Lottie’s writing manages to latch onto the reader and not let go, but for me it was her refusal to conform and instead confront people’s perceptions of disability. I’m hopeful for much more from this talented writer and that publishers are starting to see the value of individual and adventurous disability narratives that truly represent such a vibrant and varied community.
Published by Oneworld Publications May 2024.
Meet the Author
Lottie Mills was born in Hampshire and grew up in West Sussex, Hertfordshire, and Essex. She studied English at Newnham College, Cambridge, and contributed to Varsity and The Mays during her time there. In 2020, she won the BBC Young Writers’ Award for her short story ‘The Changeling’, having been previously shortlisted in 2018. Her work has been broadcast on BBC Radio 1 and BBC Radio 4, and she has appeared on programmes including Look East, Life Hacks, and Woman’s Hour to discuss her writing. Monstrum is her debut book.
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