Paralympian and broadcaster Ellie Simmonds meets Editor Melissa Holmes to discuss her latest documentary, which asks: Should I Have Children?
When Ellie Simmonds was two days old, her mum gave her up for adoption. After being handed a hospital leaflet filled with outdated information and harmful stereotypes about achondroplasia (the form of dwarfism Ellie has), her mother chose to find a new family for her little girl, perhaps believing that raising a disabled child alone would be too challenging. While pregnant, Ellie’s mum hadn’t known she was carrying a child with dwarfism, which can be a genetic condition.
30 years on, and science and society have progressed. Women are offered routine scans to check for Down’s Syndrome, limb differences, spina bifida and other conditions. Women, couples and families are given support, genetic counselling and further testing to help them make difficult decisions about their pregnancies.
Things were so different when Ellie was born. She spoke to her birth mother during the documentary’s production, and explains: “I really sense that my mum was on her own through everything. Back then, people with dwarfism were perceived to be unintelligent, and society thought of us as being in the circus.”
EMOTIONAL JOURNEY
While making the programme, Ellie had the privilege of meeting many different people including surgeons, medical experts, and people planning for or having families. “I met David and Emily,” Ellie shares. “We follow them, talk to them and hear their fears. Their openness, their excitement, and the emotions they went through, getting the news their child would be born with Down’s Syndrome. It was amazing to follow them, to see Megan’s bump get bigger, then all of a sudden there’s a baby. And the joy that baby Carys brings to them – it’s amazing what the human body can do.”
The experience of David and Emily is a heartwarming, ‘good news’ story. But the documentary poses some tough questions, as Ellie describes: “There’s a big difference between what my mum went through compared to now and the amazing science we have access to. But is that science going too far?” Ellie describes a “fine line” due to the development of PGT-M testing (pre implantation genetic testing, which can be used by people who have a serious inherited disease in their family, to avoid passing it onto their children), and the abortion rates for Down’s Syndrome (around 90%), for example.
FUTURE FEARS
“We talk about that in the programme,” she says. “It’s not just about achondroplasia and my personal story. We delve into disability as a whole, and ask is it good that scans and tests are there to help and support people? But also, does it make people fear the future, in terms of what that can hold and if they can cope?” Ellie describes the testing, scanning and support available to expectant parents as “amazing.” But she also fears that: “It’s going to start to reduce the size of the disability community.”
Was there a moment during filming that challenged or shifted Ellie’s views around disability, genetics, or parenthood? “For me it was the sadness of disabilities or complications in birth that mean the babies just won’t survive. That touched me emotionally.”
“We talk about miscarriages and loss and termination,” reveals Ellie. “When you’re at school, you’re told that if you have sex, you’ll get pregnant. But it’s not as straightforward as that. Yes that does happen, but I really want to educate people that it doesn’t happen that way for everyone.”
CHOICE
Ellie also recognises how much the world has changed, saying: “Maybe 40 or 50 years ago, it was perceived that a woman finds a husband, gets married, has children, and is a mother. That’s incredible, but it’s nice to have more choice now. More people are deciding not to have children, or are choosing to have them later in life and focusing on their career. That’s so powerful – we should celebrate that.”
So has making the documentary influenced Ellie’s own thoughts around having a family? “At this present time I’m focused on myself, my career and travelling,” she reveals. “Lots of my best friends are having children, so I get to enjoy children through them. Although I don’t know how they do it,” she ponders. “They seem like they’re exhausted all the time!” Knowing she has options, like egg freezing and IVF, interests Ellie, but for now she’s “very much just enjoying every day as it comes.”
PROUD
Ellie hopes that, when disabled people watch the programme, it makes them feel proud to be disabled. “For me, I see what still needs to be done,” she shares. “And yes, the education is getting better, but the fear from some individuals of bringing a disabled person into the world is still there. But when they have that baby, that fear disappears.”
She feels people worry that raising a disabled child will be a negative, hard experience. “But, as individuals, we’re stronger than we think,” Ellie smiles, “and we can deal with things. I think we need to celebrate difference and not be fearful of bringing disabled children into the world – it’s the most incredible and powerful thing.”