Simon Jarrett meets Henny Beaumont, author of a forthcoming graphic novel A Hole in the Heart, which charts the life so far of her third child Beth born in 2001 with Down’s syndrome.
Lying in her hospital bed having just given birth to her third child, the first inkling for Henny Beaumont that all might not be well was when the midwife asked her what her other children looked like and whether the newly-born Beth looked like any of them. Clearly concerned, the midwife called in a doctor. He was very busy, but took the time to reel off the checklist he had learned at medical school … slanted eyes, a flat head, poor muscle tone … “Your baby appears to have Down’s syndrome”, he had time to announce to her, before he dashed off to the next thing.
And so it began. Tests confirmed the diagnosis and, as far as Henny Beaumont was concerned, life was over – not for Beth, but for Henny and the rest of the family.
Shock
That was in 2001. Beth is now a thriving 14 year old, a younger brother has arrived in the family (to whom she is exceptionally close) and she is the star of Henny Beaumont’s graphic novel, A Hole in the Heart, which will be published in March 2016. Meeting Henny in an east London café, it is difficult to reconcile this cool, calm, humorous, insightful and hugely talented illustrator/ author with the weeping, crushed, defeated woman, lying helpless in bed, portrayed in the opening frames of the novel. The birth of a child with Down’s syndrome was a complete shock to her and her own reaction was even more of a shock. This child coming into the world had, she believed, condemned her to a life of misery. “Up until then, as a Guardian-reading liberal person, I saw myself as fine with disability. It’s just that it had nothing to do with me – it was not my world“. It was her world now – and it wasn’t a world she wanted to be in.
Brutal medical profession
The medical profession did not help. After the brutal delivery of the diagnosis in the hospital, along came the GP. Known to the family for many years, and appreciated as a good GP, she told them her assessment. “She will never read and she will never write”, she informed them, adding: “You will be comforted to know that your daughter is likely to die before you”. This, we should take a moment to reflect, was in 2001, not 1951.
The early days were very hard. Henny started to hate everyone who did not have a child with Down’s syndrome, imagining hostility from every stranger she encountered, even when it was not there. She and her husband had doom-laden conversations – the childhood of Beth’s siblings would be ruined, Beth would only be able to relate to people like herself, schooling would be a nightmare and, as for their own lives, well…
Meanwhile Beth began being Beth. Her brother and sister loved her and welcomed her into their lives. This new person stamped her personality on the family and revealed a cavernous gap between expectation and reality. She changed them for sure – but not in the ways Henny and her husband had expected.
All of this, the first 13 years of Beth’s life and the changing family that she created, is the theme of Henny Beaumont’s novel. The title refers to both the real hole in the heart that Beth was born with (now corrected) and the metaphorical hole that she first opened up but then filled in her family.
Growing medium
Henny, already an artist and portraitist, had become interested in the growing medium of the graphic novel through the organisation Laydeez do comics. This group challenged the British notion that ‘comic books’ were somehow a lesser, non-adult art form (they have always been taken far more seriously in Europe – especially in France and Belgium) and also challenged the traditional male domination of the field.
Inspired by the graphic novelists she encountered and read, she realised the potential of bringing illustration and text together. She could show many different processes taking place at the same time, in particular the disparity between thoughts and spoken words, between fantasy and reality. This occurs consistently in the book. As she and her husband fret that their other children will never be able to love Beth, the children cuddle her and argue over who gets to hold her next. As they worry over how she will never be able to relate to people who are not like her, she plays happily with her siblings.
Life-affirming
Who is the novel aimed at? She wanted to write something that challenged people’s ideas about disability, not by attacking them but through humour and by examining her own changing responses. Henny hopes, of course, that parents of children with disabilities will read it but thinks that it could be enjoyed by a broader parental audience. It is often humorous but has a message about the powerlessness that all parents can feel when coming up against the entrenched bureaucracies of education or health. The experience of mainstream primary school was not, in her words, ‘so great’.
The book also captures how our own frailties and hidden doubts affect our capacity to deal with these repositories of authority.
A Hole in the Heart examines themes of shock, misery and struggle. Yet, in the end, it is a wise, funny, life-affirming account of one child with a syndrome and a big personality overcoming everyone’s expectations of her and of the family that took her into their hearts.
Look out for Community Living’s review of A Hole in the Heart, due to be published by Myriad Editions in March 2016
For more information about Henny Beaumont see www.hennybeaumont.com
Catch Henny Beaumont talking about her work at the Hay Festival in May 2016
