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Sat 19 October 2019
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Salena Godden with an excerpt from the new book Others, published by Unbound, about her sister Jo-Ann who has Williams Syndrome.

Others is published this week. This tremendous anthology celebrates how words can take us out of the selves we inhabit and show us the world as others see it.

Fiction writers and poets make us look out through other pairs of eyes; essayists will probe the mental blocks that can make it hard to see the realities beyond the media bubbles. The contributors will do nothing they don’t already do – make the homely strange and the exotic familiar – but they’ll do it with an unflinching eye on today’s social inequalities and the thirst for political change.

This book contains a spectacular line up and includes work from Leila Aboulela, Gillian Allnutt, Damian Barr, Noam Chomsky, Rishi Dastidar, Peter Ho Davies, Louise Doughty, Salena Godden, Colin Grant, Sam Guglani, Matt Haig, Aamer Hussein, Anjali Joseph, AL Kennedy, Joanne Limburg, Rachel Mann, Tiffany Murray, Sara Nović, Edward Platt, Alex Preston, Tom Shakespeare, Kamila Shamsie, Will Storr, Preti Taneja and Marina Warner. It is edited by writer and psychologist, Charles Fernyhough. 

There are so many highlights in here – In ‘Sounds of Blackness’ Colin Grant writes about being black but not sounding it, and what it means for his own sense of identity. ‘Excuse Me, but Your Otherness Is Showing’ by Joanne Limburg tackles a late diagnosis of Asperger’s. In Sara Novic’s story ‘Things Unspoken’ she explores society’s attitude to deafness. Tom Shakespeare’s ‘A Short Story’ is an account of growing up with achondroplasia. And Noam Chomsky writes on the refugee crisis. ‘The shame is deep and persistent. The time has surely come to put it to an end…’ 

Others is launching this week, July 2019. Others was successfully crowdfunded with people power and published with Unbound. All net profits of this book are going to Anti-Hate UK and Refugee Action charity, so please  order your copies today!

The essay I contributed to this book is titled ‘We Are The Champions’  I wrote about my sister Jo who was born with Williams Syndrome, a rare developmental disorder. This week I would like to share a short extract from that with my friends at Byline Times.

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EXCERPT: We are the Champions

My sister Jo-Ann is the most other-Other I know. 

She was born with Williams Syndrome. It is a relatively rare developmental disorder which means she has moderate learning difficulties. Jo was born with a number of missing genes on chromosome 7. There is more to her than this. There is more to her than a diagnosis, and I can never hope to fully capture her energy and joy, but here I hope to try. Jo is dual or mixed heritage, Jamaican-Irish and born in the UK. She lives for the big fun, colour and music, to laugh and party, dance and sing. She is like a magpie to shiny things, gold rings, pearls and glitter. She will happily sit for many hours with a pen and a jewellery catalogue ticking her favourite photographs of diamonds and pearls. Just like a child she loves sugar and ice cream, cakes and sweets – her favourites are chocolate caramels and sticky toffee pudding. My sister Jo cannot read or write. I have asked her if she minds me writing about her and she says she’s excited about it. She wants us to have a party and to meet you all. She wants you to know about Williams Syndrome. She told me she has some things she wants to tell you all about her life, about being ‘special needs’ and about her experience of being Other. She believes that people like her have so much they can teach ‘normal’ children and regular adults too. 

Jo needs a routine, structure, without this she has great anxiety and is likely to have panic attacks. Jo suffers from seizures and spasms. I will be talking to her and having an ice-cream and then suddenly it is as though she leaves me. At first it looks like she has stopped breathing properly. Then she shakes and vibrates and her eyes roll and go out of focus, she leaves for a few minutes, fitting, convulsing, shaking, spasming, rigid, gasping for breath, then she goes limp and needs a cuddle and she falls asleep for one or two minutes. Just as suddenly she returns, she sits upright again and smiles and she is back in the room as though nothing happened and she picks up her spoon and finishes her ice cream. These spasms hurt her, she says, inside her muscles, where she has clenched up. She can have any number of fits during a day, sometimes none, sometimes five during a Sunday lunch. We still don’t really know what triggers them, they seem to come out of nowhere. Is it emotional, anxiety or over-excitement? Or is is connected to diet, like a sugar rush after a Coca Cola? Presently we still don’t know and we are on a waiting list for her to have more neurology tests and the results of a brain scan. 

I remember now that I once saw pictures of brain scans, colourful alien images, showing the brain activity of a person with Williams Syndrome as very active and lit up compared to a ‘normal’ brain, which was mostly grey with the odd flicker of colour. The Williams Syndrome brain was almost identical to that of someone who had been administered LSD. The LSD brain and the Williams Syndrome brain were vibrant, colourful as a sky on fireworks night, a blaze of colour and lights and connections compared to the dull grey picture of the ‘normal’ brain. It wouldn’t surprise me if all that brain activity is what causes my sister such high emotional euphoria and also chronic emotional exhaustion. 

Everyone who meets Jo loves her, she’s the life and soul of every occasion. But as child-like, pixie-like as she may seem, she is a 36-year-old woman now and is justified in being frustrated and angry sometimes. Jo will speak her mind. She will let you know clearly when she feels patronised and how she feels about things she won’t eat or sounds or smells that upset her. All of her senses are sharper and more finely tuned than mine. In public her abrupt sudden comments or outbursts, her fits, her rocking back and forth, her anxious rubbing of her hands, her need for cuddles and connection, her petting of dogs and her displays of affection, vocal and physical, can be strange for strangers. She cannot suppress herself or her impulses in the same way we can. When she was a little kid it looked ‘normal’ for her to run across a restaurant to pet a puppy but it looks odd now to some. In clothes shops she runs up to dresses and touches them and cries out with pleasure stroking them because the fabric is soft and silky. When I invite her to my poetry gigs, she has such confidence, and has leapt up on stage and belted out ‘We Are the Champions’ by Queen. The crowd join in and everyone applauds her. ‘We Are the Champions’ has become Jo’s theme tune in London poetry circles. However, some ‘normal’ people just see the surface, they see someone making a noise and a fuss, they see a blatant show of emotion, a loud expression of love and joy, so often I see my sister frowned upon, stared or tutted at, or seen as anti-social by the miserable and the judgemental and the ‘normal’ in society. 

My empathy and solidarity with my sister and with others is part of my life. I will continue to speak up and march for others, for all of our human rights. I believe strongly that once an idea or a notion is heard it cannot be unheard. So please keep going and never give up, keep talking, keep marching, keep organising, keep writing and keep sharing. Speak up for the people who perhaps cannot vote, who cannot march, the people who need our NHS more than we do. The people who need our assistance, support, funding, care and our humanity. We are all more connected than we realise, and more similar. Now more than ever, now in this era of performative cruelty, it is our differences that unite us. And our actions of kindness and tolerance are more vital than ever. We must all stand up and speak up, take room and make room for all other others. 

Others is out now, published at www.unbound.com

This book is in aid of refugee-action.org.uk & stophateuk.org

NEW this week: ‘Telling Tales’ with Salena Godden on Radio 4Extra find it on the BBC iPlayer and BBC Sounds  – https://www.bbc.co.uk
Salena Godden is the poet laureate for Byline Festival  ‘Pessimism Is For Lightweights, 13 pieces of courage and resistance’  is published by Rough Trade Books roughtradebooks.com

Come meet Salena at the Byline Festival this summer

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