Getting to know Steph: my sister-in-law with Down’s Syndrome

Published on: 12 Chwefror 2018 Author: Abi Elphinstone

Writer Abi Elphinstone has learnt so much from having a family member with Down's Syndrome. So much so, she's created a character based on her in her latest novel, Sky Song. 

One of the many things I have learned about Down’s Syndrome is that it is very easy to make assumptions about people, based on what we first see and what limited knowledge we may have about the condition.

Growing up, I didn’t know much about Down’s Syndrome. I knew the medical blurb – that it’s a genetic disorder caused by the presence of all or part of a third copy of chromosome 21 – and that it is typically associated with physical growth delays, characteristic facial features and mild to moderate intellectual disability. Beyond that, I knew very little.

It wasn’t until I started dating my now husband, 11 years ago, that I learnt more. His little sister, Steph, has Down’s Syndrome –  and as I got to know her, I realised how very much more there was to her than the medical conclusions listed above.

I was also to learn so much from her.

Energy and joy

When I first met Steph, I confess it was probably her physical appearance that struck me first. She was home for the weekend from the Camphill residence she currently lives in, which provides support for the education, employment and wellbeing of young adults with developmental disabilities, mental health problems or other needs. I remember thinking how small Steph was – both in regards to her height but also some of her features, most notably her tiny but adamant hands, which she thrust out to shake mine when introducing herself.

Her personality, however, quickly took over. I remember thinking how precious her bond was with her big brother; she never strayed far from his side and constantly told him how much she loved him (and he, her). I remember marveling at her energy and joy as she danced around the sitting room after supper. Above all, I remember being baffled at how quickly she trusted me; within hours, she was cuddling me, teasing me and offering friendship in such an unequivocally honest and open way. It was a refreshing change from the angst of our restless world.

In the first few years I spent getting to know Steph, I saw her in environments she was comfortable in – at home with her family, at Camphill with her friends, on holiday with her siblings.

Abi and Steph

I grew aware of her vulnerabilities: she struggles to express her emotions in words because she doesn’t have the language or the understanding to articulate her feelings; she gets confused by changes in routine; she becomes frustrated when she can’t physically do the things her brothers can... I began to see my role as an older sister to her; someone who could look after and help her.

'I am a braver person because of Steph'

Only now do I realise how patronising that view was of our relationship. Steph is like a younger sister to me because I love her with all the strength of such a bond, but I was not the only one doing the caring, helping and nurturing back then. Steph cared for, helped and nurtured me, too.

Over the years, I have realised that she has taught me an immeasurable amount about life, and how to tackle it – more so perhaps than anyone else. Steph finds joy in almost every situation: when it rains during picnics out on the moors, she laughs; when people around her are arguing, she moves in for the hug; when everyone else is tired and fed up, she dances; whenever I feel sad, she somehow knows the right words to use.

Indeed, her language fascinates me. She frequently mispronounces words and strings phrases together that don’t quite make sense (‘You give me happy,’ ‘You best brother,’ ‘Don’t be joking’) but there is a directness in her speech, and a wisdom, to rival the most impressive of orators.

In my books, I write a lot about courage and this is something Steph has in spades, whether it’s swimming in icy rivers in Scotland when everyone else is too chicken to jump in or skiing through blizzards in the highlands when most have opted for a hot chocolate in the nearest lunch hut.

Seeing photos and videos of Steph competing in the Special Olympics Ski Team, and her subsequent comments to the BBC on her performance with her big brother –  Speedy, speedy. I like fast’ – fills me with pride and motivates me to push myself harder in my writing career. I think I am a braver person because of Steph – and I am undoubtedly more compassionate because of her, too. Her unrelenting love for her family and friends continually inspires me to be more patient, more understanding and more loving.

I hope that in my latest book, Sky Song, I have a created a character in Blu who is as joyful, courageous and kind as my dear Steph.