Life is more sparkly having a sister with Down’s syndrome

Sisters Emily and Sophie Potter share why they have created their play SOPHIE, a heart-warming, hilarious and deeply personal celebration of growing up with a sister who has Down’s syndrome.

SOPHIE is a one-woman, autobiographical rollercoaster that takes you on a journey with Emily, as she invites you to Sophie’s 35th birthday party – her big sister who just happens to have that extra sparkly chromosome called Down’s syndrome. 

We’re whisked back to Hull in the 90s and noughties, reliving teenage bust-ups, mother-daughter breakdowns over vodka Red Bull and thongs. Expect throwback bangers, questionable fashion, nostalgia, and cake. You’ll leave with your heart a little fuller.

Sophie and Emily featured in Big Issue’s Learning Disabilities Week special in 2024and were Big Issue Changemakers for their work founding organisation Down the Lens in 2025. Here, they share their journey to creating SOPHIE, which was awarded the Phoebe Waller-Bridge ‘Keep it Fringe’ fund in 2023.

Emily

When growing up with a sibling who has a learning disability or any vulnerability, you naturally take on the role of a carer from such a young age. You become hyper-aware of the world’s cruelties, of how ignorant or dismissive people can be. You’re trying to navigate your own identity and figure out who you want to become, but you’re also tethered to someone else. You begin to think for them and sometimes speak for them. 

Internally, you feel like an identical twin. Your protective instincts puncture you so early on but you often don’t always have the skill set or confidence to stand up for them in society. This is a lot of pressure for a child, to have a burning desire to defend their sibling if need be, but also that comes with a tremendous amount of fear. What do I say? What will happen if I do? 

I experienced the stigma a lot growing up in the 2000s because of the programmes and films which were huge cultural mainstays at the time – Bo Selecta, Family Guy, American Pie. I find these films incredibly sexist and misogynistic, but also hugely ableist. The ‘R’ word was spat out like chewing gum. And that’s why we’ve created our show SOPHIE.

We officially began creating the show around seven years ago. The process began with us collecting stories over our entire lifespan – using photographs and VHS clips to restore our memories. This was a lot of fun for both of us but inevitably, it was also slightly therapeutic. Once the final stories were selected, we created a timeline with the events, naturally structured in chronological order from our early years, through to present day. We realised the birth of Sophie was a significant story in itself, so we indulged in numerous conversations with our mum and grandma (before she sadly passed away).

With the structure in place, I was then able to begin writing the chapters, each from a different perspective of a different age – five-year-old Emily, nine-year- old Emily, 13-year-old Emily and so on. I personally found this a very helpful approach to writing the play. To my surprise, the dialogue flowed like a river. Writing forced me to confront how selective my memory had been, especially regarding my behaviour and emotions towards Sophie growing up. I realised I had been carrying around feelings of shame, guilt, and embarrassment throughout much of my teenage years.

Read more:

• Even though I have Down’s syndrome, I know how to party. I’m the first and last on the dance floor
• This afternoon tea is made and served by people with learning disabilities: ‘A wonderful celebration’
• We may have learning disabilities – but we still want the same opportunities as everyone else

And when I spoke to other siblings of people with Down’s syndrome or other learning disabilities, they echoed many of the same feelings. Over the years, we’ve performed many different versions of the play, and the feedback has been moving. Many people tell us how much the story resonates with them as siblings, regardless of whether a disability is involved. 

Others have highlighted how important it is that the siblings’ voices are heard, especially younger children and teenagers because they are often pushed aside. This is unintentional but often necessary as the child with a disability requires more focus.

Young people need to understand that growing up with a learning-disabled sibling, doesn’t just shape your childhood, it shapes the kind of adult you become. It will inevitably make you a more patient, compassionate and fiercely loyal human as you grow older and integrate into the world.

Sophie

I have enjoyed every bit of the play. I have loved thinking about and choosing all of the different songs that are used in the play. I love remembering our childhood and all of the things we did together as siblings. I like doing the play because it is a nice gift to our grandma and grandad who are not with us anymore.

I also think it is very important for other people with Down’s syndrome to see the play and feel like they can do something like this too. I really wish more people could see the play and would really like to be on a stage again. We would like to put the play on for a run at a theatre in London and get more help with the show because we have done everything ourselves and it is really, really hard. 

My dream is to do the play at a theatre with a team of people who all love 90s and noughties music and we can have lots of fun together. My favourite part in the play is when I say: “I want to look sexy.” We want to keep sharing our stories and hope people learn a little something along the way but most importantly, we hope our work injects a little more sparkle and joy into people’s lives.

SOPHIE will show on Tuesday 1 July at 7:30 at Walthamstow Trades Hall, E174RQ. Get your tickets here.

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