Five minutes with… Paralympian Ellie Simmonds

When British Paralympic swimmer Ellie Simmonds’ mother was told that her daughter had dwarfism, she gave her up for adoption just a few days later.

And now that Simmonds is 30 – the age she believes most people start to think about having a family – she is curious to know why parents become fearful when they find out their child has a disability.

In her new ITV1 and ITVX documentary, Ellie Simmonds: Should I Have Children? Simmonds, who grew up in Aldridge, asks herself the very question, knowing what the potential outcome could be, as a woman living with a disability.

Simmonds, who won two gold medals for Great Britain at the Beijing 2008 Summer Paralympic Games, unpacks the hard decisions that expectant parents would need to make when faced with the news that their child could be born disabled.

Simmonds speaks with doctors, frontline counsellors, geneticists and expectant families about making the right decision that could impact their life, including those she meets at one of the UK’s leading fetal medicine units (FMUs).

She also addresses some of the misconceptions that expectant parents may have about life as a disabled person, and whether the growing representation of disabled people in the public eye has made a difference.

Following on from her BAFTA-winning documentary, Ellie Simmonds: Finding My Secret Family, the Paralympian also explores some of the choices around prenatal testing.

She also looks at how it can impact the decisions parents make, and whether the societal perception of disability has evolved over the last few decades.

Simmonds, who also hosted BBC One’s Ellie Simmonds: A World Without Dwarfism?, talks about what viewers can expect from the documentary, the key messaging she wants to convey, people’s biggest worries, and what has surprised her the most whilst embarking on this emotional journey.

What can you tell us about the documentary?

It’s about being a woman and the thoughts and feelings you have when considering whether you want to have children or not. Being my age, 30, a lot of my friends are now starting to have children, but I’m not ready just yet.

In the documentary, we have incredible access to a fetal unit and medical professionals and professors. The film shows what women, caregivers and couples go through when there may be some complications with a pregnancy, and the choices they face.

It looks at the language used to explain the situation by the medical professionals and if there has been a change from what my birth mum was told 30 years ago, when she found out I had a disability. I’m looking at how the medical professions support women and couples who might be in that position.

What information and key messages did you want to get across to the view in the documentary?

That support is crucial, and it’s not easy. I think when you are younger, you get told it’s easy to get pregnant, but the reality is it can be tough. There are couples who go through this joyful experience, pictures on social media and baby reveals, but also there are a lot of women and couples that go through the struggles, even if there aren’t any complications. Support is definitely a big factor when you are going through this emotive time; having people around you is crucial.

It’s really important to educate yourself and also to open up that conversation about the struggles that women and couples go through to have a child. After speaking to lots of people through this documentary, so many have difficulties. It’s hard, and you feel like you are on your own, and I don’t want people to feel like they are on their own.

What do you think is people's biggest worry?

I think it’s the fear of the unknown. If they find out that their unborn baby has a disability or an illness, it’s the fear of the unknown. It’s that fear of what is actually going to happen.

You see on social media what you envision as this picture-perfect pregnancy, and the baby at the end, so when they find out there are complications, they blame themselves. Then that fear creeps in and they think, ‘What have I done?’ and they blame themselves. It’s okay to have that fear and use that support system around you, you are not alone.

With all the couples I met, as I talked to them about when they were pregnant, the fear was of the future and the unknown. As soon as the baby was here, all that went out of the window.

Science is incredible, but when you get told something that is maybe a bit different, or your child has a disability, then you play out all these worst-case scenarios.

When they find out their child has a disability, their brain is on overload. That’s what I found out from my birth mum, she was vulnerable, your hormones and emotions are everywhere.

What specifically prompted you to explore this topic now?

I think being 30, but also seeing what my birth mum went through and the language that was used back then to tell parents, I wanted to see if that has improved. Society, as a whole, has got better with different disabilities, but I still think we have a long way to go.

What surprised you the most during this emotional journey?

The fear that people still have. It’s probably a fear we didn’t realise we had until it becomes a reality, but I want people to realise they are stronger than they think.

For example, David, one of the fathers in the documentary, had a fear of his child being bullied. That part is the bit that upset me the most. It makes me feel like I want to see what else I can do to help people, what more I can do to help disabled people.

Ellie Simmonds: Should I Have Children? Comes to ITV1 and ITVX on Tuesday, May 27.