Hemophilia in Fiction: Where Is It?

Ann Kendall avatar

by Ann Kendall |

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Last week, I read Gill Paul’s latest novel, “The Lost Daughter.” The book is a historical fiction account of Russia’s Romanov family.

It is well-known that the Romanovs and hemophilia are connected, but I had no expectation that bleeding would play into the plot. Near the beginning of the story, I read quickly past the word “hemophilia” — and had to return to re-read it. It was surprising to see it in fictional text.

Hemophilia popped up several times in the novel, playing a role in detailing the family’s last days of captivity, and in the death of Maria’s fictional child. I was shocked more than surprised as I read the passages. Truthfully, I was uncomfortable.

I’ve never read about a fictional character with hemophilia. It was awkward to read about bleeding in the fictional sense because it was just so … new.

A few years ago, playwright and author Susan Nussbaum wrote in HuffPost, “On the whole, I do my best to avoid books and movies with disabled characters in them. … Disabled characters are written into stories for one reason: the disability.”

She asks, “Can’t there ever be a disabled character in a book or film just because?”

Paul may have met Nussbaum’s challenge. The characters in “The Lost Daughter” have hemophilia as a matter of background to the family story — not to provide a lesson, secure redemption, or serve a greater purpose.

But Paul’s work stands nearly solo in the massive field of fiction. A quick search of Barnes & Noble reveals 52 books in its catalog with the keyword hemophilia. All are nonfiction. I found similar results at our local library.

The Bellwether Prize for socially engaged fiction – created and funded by writer Barbara Kingsolver — is awarded biennially by PEN America. Readers, teachers, and librarians need and want inclusive, diverse fiction. Why? Because when we see ourselves reflected in the characters, we find strength and empathy for ourselves and others.

The struggle to navigate the most difficult of plot lines is one we all identify with — particularly those with bleeding disorders. Our literature, ourselves.

The dearth of literary characters with hemophilia could easily be corrected. In doing so, authors would broaden our community beyond its current borders. At the end of the day, that is the highest and best achievement of literature.

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Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.

Comments

Paul Clement avatar

Paul Clement

Hi Ann,

Richard J. Atwood can help you find nonfiction books involving hemophilia. He is a columnist for LA Kelley Communication's Parent Empowerment Newsletter (PEN) and an expert at finding literature involving people with hemophilia. He periodically reviews books in his column: check out the August and November 2018 editions of PEN for a review of 34 nonfiction books involving hemophilia for younger readers https://www.kelleycom.com/our-newsletters/newsletter-archives/2018-pen-archives/

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Sean Phillips avatar

Sean Phillips

I have a story with a hemophiliac character I've been trying to publish for years, but I haven't been able to get it quite right. Until now.

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Sean Phillips avatar

Sean Phillips

I have a definite non-fiction book about a character with hemophilia. I have to admit the reason is the hemophilia itself. I need someone to take a look at it, though.

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Sean Phillips avatar

Sean Phillips

I have a fiction story about a character with hemophilia A. But I have very much trouble getting my story to work! Please help.

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