Ellie Simmonds: 'Doctors said kids like me were seen as "evil" and belonged in the circus'
Pondering parenthood has prompted all sorts of questions for me – and society – writes Ellie Simmonds.
This article first appeared in Radio Times magazine.
At ten days old I was given up for adoption by my birth mother. She’d been told I had achondroplasia, a form of dwarfism. A curt medical professional handed her a fact sheet stating that children like me were often perceived as "evil" and "stupid" and traditionally found work in the circus.
My mother was a young single parent and having just given birth, her hormones were all over the place. She couldn’t cope with the news, which stated that I’d be laughed at and came with images of how I might look later in life. She had no support and she was scared.
Thirty years on, we like to think that we live in a much more inclusive society. Perhaps my five Paralympic gold medals and sequinned twirl on Strictly Come Dancing are testament to the strides we’ve made.
But when it comes to attitudes towards disability during pregnancy, has anything really changed? What does the way parents respond to a diagnosis of disability for their unborn child tell us about our society? It’s a sensitive issue that has been swept under the carpet for too long.
As the title of my ITV documentary, Ellie Simmonds: Should I Have Children? suggests, it’s also a deeply personal question. Hitting 30 means I’ve started to think about my future.
While making my film, I learnt that if I became pregnant with a partner who also has dwarfism, there would be a one in four chance of our unborn child having a "double dose" – my children would have the possibility of inheriting two genes for skeletal dysplasias.
Sadly, it’s an almost impossible situation to comprehend. The doctors often have to advise termination as these babies, if they’re born, usually don’t survive the early stages of their life because of severe respiratory and cardiovascular problems caused by restricted bone growth. No parent should have to go through that.
If I were to go through genetic testing, the dwarfism gene stops with my children. But if we all did that, there would be no babies with dwarfism born to couples with dwarfism.
While I’m not at the stage of wanting a baby just yet – I’m busy enjoying the opportunities I’ve had since retiring from competitive swimming in 2021 – it’s something I will have to consider.
In my documentary, I talk to many wonderful parents who were brave enough to speak honestly about what it’s like to be told your unborn child has a disability. People might not realise they have a negative view about disability until their unborn child has a diagnosis.
And even today there can still be problems with the language used – one parent I spoke to was told it was “just bad luck” when her son was diagnosed with dwarfism at her 28-week scan.
Many told me they felt fearful about their child’s future. One parent was terrified his unborn child, who was diagnosed with Down's syndrome, would be bullied at school "because of their chromosomes". But when he cradled his gorgeous newborn in his arms, his fears ebbed away.
To feel fear is understandable, especially if the health outcomes for the child are unknown. But perhaps we’d feel less fear if we were a more inclusive society. We’ve made leaps forward but we’ve not gone far enough.
Twenty-four per cent of the UK population have a disability but there are still inequalities in terms of education, employment, housing and wellbeing.
My parents, who adopted five of us, instilled such positivity about who I am and my dwarfism – together with my siblings, many of whom also have disabilities. So, despite the obstacles, my dwarfism is the reason my life has been so incredible.
What makes it more difficult for expectant parents is not knowing how wonderful a disabled life can be. The information from medical professionals (who do amazing work) comes without that context – which is why visibility on screen and in society is so important.
Crucially, we need more support for parents whose children are diagnosed with a disability, whether that’s as a foetus or later in life. Just like my birth mother needed it 30 years ago.
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Ellie Simmonds: Should I Have Children? airs on Tuesday 27th May at 9pm on ITV1 and ITVX.
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