Hannah Bent
Ultima Press
Otago Daily Times, September 11th 2021
Hong Kong-born journalist and documentarian Hannah Bent’s bibliography reveals three main preoccupations: the social, cultural and personal implications of living with a disability, entomology, and the relationship between her homeland and Mainland China. All three themes are explored in this heartfelt and moving novel.
Marlowe Xiǎ Qīng Eve is one month from defending her doctoral thesis on the parasitic Maculinea arion caterpillar when she is called back from London because her sister, Harper, is seriously ill. Born with a congenital heart defect, Harper’s health has slowly deteriorated over the years. Now, at twenty-one, the only solution is a complete heart-lung transplant but is being denied treatment because her Down syndrome “[severely limits] her physical and mental ability to cope with the treatment”, a death sentence to which her father has, apparently, capitulated.
Returning to her childhood home overwhelms Marlowe with memories of her mother’s death two decades earlier, all the more disturbing because the physical traces of her presence have vanished since her last visit. This erasure (for which she blames her father’s girlfriend, the ‘step-monster’) leaves her feeling as if she is losing more pieces of her mother every day. Determined to save her sister at any price, Marlowe takes Harper to Shanghai where a Chinese broker promises a transplant within days. Ignoring her suspicions about the source of the organs and Harper’s repeated requests to go home, she uses the money meant for her own education to pay for the surgery. However, as the procedure is repeatedly postponed and Harper’s health continues to deteriorate, she begins to wonder whether she has made the best choice for either of them.
Harper, meanwhile, has dreams of her own. She wants to marry her boyfriend, Louis, at sunset. To cook with her grandmother, read with her dad, chat and laugh with her friends. To be an author with an agent of her own. To live until she is old and all her dreams have come true. Despite this, the most important thing about her heart, made for her with love by her parents, is that can love in turn, and she does not want to exchange it for anyone else’s. But she also recognises that Marlowe’s own heart has been broken since their mother’s death, and she is prepared to sacrifice hers for her sister’s.
The novel’s first-person narrative alternates between siblings, a technique that highlights their differences psychologically, emotionally and stylistically. Marlow’s chapters are in the past tense, reflecting her need for control and inability to move forward in her life. Harper, meanwhile, relates events as they happen, either directly or in excerpts from her autobiography storybook. Disempowered by everyone – even her own sister – writing allows her to shape her own narrative and find meaning in events outside her control. And by demanding people acknowledge she has Up, not Down syndrome, it is Harper, rather than Marlowe, who truly challenges the social construct of (dis)ability.
Bent has spent years documenting the lives group of talented and successful Down syndrome artists and many aspects of Harper’s character, from her love of Shakespeare and her relationship with Louis to her dream of becoming an author in her own right are drawn from real life. As such it is a sad irony that her (their) voice must be channelled through a ‘normally-abled’ writer, but at least the author is coming from a place of empathy and understanding, if not first-hand knowledge.
Leave a Reply