To Know It, You Must Live It

I make a meagre living as a reader for a Swedish publisher and right now I’ve got a pile of books waiting to be read, all of them critically acclaimed or otherwise recommended. I’m not complaining, for what could be better for a bookworm like me than getting paid to read?

But today I am not at all interested in any of the books awaiting me. Instead, I pull another book out of my bag. It’s one I found in the local bookshop earlier today and which I am itching to read.

You see, I’ve got a secret passion, a guilty pleasure: graphic novels.

Comics? Cartoons? Nah, graphic novels are more than just comics for adults. At their best, they are works of art, like the book I’ve just got my hands on.

6a010536de2b39970b01b7c87debf4970bHole in the Heart: Bringing Up Beth is a beautifully crafted and deeply engrossing graphic memoir by Henny Beaumont, a London-based artist and portrait painter.

And Beth is her daughter who has Down’s syndrome.

What initially drew me to this book when I spotted it in the bookshop was the title, for I too was born with a hole in the heart although it was only detected when I had a stroke in my early thirties.

Beth, like some children with Down’s, was born with a hole in her heart that required open-heart surgery when she was still a baby.

With heart-breaking honesty, Beaumont details the birth of her third child; the first few hours of not realising anything’s wrong with her baby until a doctor finally blurts it out, only to leave her alone to digest the earth-shattering news.img_3373

Eventually, Beaumont and her husband leave the hospital, confused, devastated and scared, along with their newborn baby and a few leaflets about Down’s syndrome.

The lack of sensitivity and empathy displayed by the doctors and nurses who examine Beth is startling, and it becomes painfully obvious from Beaumont’s graphics that there’s an acute need for more training around Down’s syndrome in the medical community.

This point was also articulated in Sally Phillips’ documentary on Down’s, which aired on BBC2 last week and about which I  blogged.img_3375

img_3376The emotional turmoil that follows as Beaumont is confronted by her ambiguous feelings towards the infant Beth, her fear that she’ll be unable to love her disabled daughter, her guilt and her ignorance and prejudice about Down’s syndrome are all presented in black and white drawings that practically explode on the page.

If Sally Phillips’s documentary focused largely on societal prejudice and ignorance around Down’s syndrome, Beaumont’s memoir explores the impact on such attitudes on herself as a mother to a child of Down’s.

In the end, both have a common message: it’s only when you live with something that you truly understand it.img_3389img_3387


2 thoughts on “To Know It, You Must Live It

  1. daphneradenhurst November 17, 2016 / 6:14 pm

    It is very sad that there is so much ignorance about Downs Syndrome. If only more people knew that these are very special people. Thank you for raising awareness on this subject.


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