THERE’S only one thing that 4ft tall Ellie Simmonds has ever wanted to change – the size of her feet.
While she loved her body, when it came to shopping for shoes, the only styles in Ellie’s size were made for children.
Ellie is fronting a new BBC documentary, Ellie Simmonds: A World Without Dwarfism?Credit: ITV
The 27-year-old Paralympic swimmer was born with Achondroplasia, a type of dwarfism that results in short limbsCredit: PA
In the BBC documentary, Ellie meets families with children aged five to 18 who have Achondroplasia and are trialling a new drug that promises to increase their growth rateCredit: Instagram
She says: “As a teenager, I always wanted bigger feet.
“I am a size two to three and there’s not much choice for shoes this small. They were made for kids with butterflies or fairy lights.
“I wanted shoes that looked suitable for adults.
“It never got me upset though, I never cried, it was just part of growing up, we all wish for something different — better hair or clear skin.”
The athlete is fronting a BBC documentary, Ellie Simmonds: A World Without Dwarfism?, where she meets families with children aged five to 18 who have Achondroplasia and are trialling a drug that promises to increase growth rate.
Vosoritide is made by US company BioMarin, and is in phase three of its UK trials, though it is not known how long the process will take to complete.
But not everyone is pleased with the revolutionary medicine.
Both Ellie and members of the dwarfism community fear it could eradicate their identity.
Ellie says: “Vosoritide is still very new, so we don’t know what it may do. Though I was very against it in the beginning, creating this documentary changed my perception.
“But saying that, if I had to choose for my child to take the drug, I would probably say no — and the same goes for whether I would have chosen it for myself.
“If it was around then, my parents would not have chosen it for me either.
“I remember as a kid, around the age of seven, I had to go to the hospital for check-ups and measurements every year.
“At the time, they suggested limb-lengthening, a procedure which many with dwarfism have. We discussed it and in the end we realised I was happy as I am — I can swim, I can run, why would I want to change?”
Ellie explains that, like 80 per cent of those with dwarfism, many kids trialling the drug have average-height parents who may not know how best to deal with the condition.
She says: “I almost feel as though, for them, it’s out of their control. They’re scared of the unknown, they don’t know anybody out there living with dwarfism.
“And that must be weird for the kid — they know that their parents love them, but also they know that they want them to change.
“I grew up with average-height parents and they always had a positive outlook for me. They are happy with who I am and didn’t want to change me.
“From the age of two I was in the dwarfism community, surrounding myself with people like me. This made me feel included rather than different.”
But this (bullying) happening shouldn’t be a reason for someone with dwarfism to change, it’s evidence that society needs to change
Ellie began swimming at the age of two and by eight years old, she was competing against average-height children. She won her first Paralympic medal aged 13 at the 2008 Beijing games.
A year later Ellie became the youngest recipient of an MBE — elevated to an OBE in 2012.
She went on to win nine titles and 15 more medals, then retired after the 2020 Tokyo games.
And while it is nothing to do with her height, Ellie isn’t immune from being self-conscious about her body while wearing a swimming costume.
She says: “As a woman, there’s often this pressure with weight.
“I think it’s heightened even more as an athlete, especially having to wear a swimming costume all the time. It does make you pay closer attention.
“Weight is definitely a big thing and you might put it on and then have to see thin women on social media. But I think that’s a natural thing and has nothing to do with being a dwarf — I think everyone feels that.”
She adds: “Clothing has improved massively in recent years. I normally go to high street shops like Zara and H&M, as they tend to have fantastic kids’ ranges.
“Getting the right size can be a challenge, but I’ve found over time these ranges can be perfect.” Around 7,000 people in the UK are affected by dwarfism, of which there are more than 200 types.
While Ellie has friends who have been ridiculed in public for their size, she confesses she has had an easy ride in comparison.
She says: “I think a lot of individuals in the dwarfism community are not really bullied or pointed out because they have a happy outlook on life. People can sense if you are self-aware.
Society has to change
“I have been lucky that I’ve had such a positive outlook on life and positive responses.
“But this (bullying) happening shouldn’t be a reason for someone with dwarfism to change, it’s evidence that society needs to change.
“There should be much more acceptance and awareness of being different.
“We are seeing more disability on TV which is great, individuals with Down Syndrome, who are blind or deaf.
“Rose Ayling-Ellis did an amazing job at representing the deaf community (on Strictly Come Dancing) and now British Sign Language is taught in schools.
“But representation on TV should be a natural thing.
“We shouldn’t be thinking ‘oh, wow, great’ at a disabled person in an advert. It should go unnoticed as it’s a normal thing.
“This helps children to realise disability is just a part of normal society.
“We have to target the children and make them more accepting, as older generations are harder to change, they’re sticklers.”
Penny Dean co-founded the Dwarf Sports Association with husband Arthur, and Ellie credits her with helping her develop her own sense of inner strength. She is now a patron of the charity.
She says: “Penny is very confident, passionate and proud about who she is and that radiates.” In fact, their relationship has gone from friendship to family, as Ellie is in a relationship with Penny’s son Matt, who also has dwarfism.
Ellie says: “We’ve been together a couple of years and just bought a house in South Manchester.
“We lived together during lockdown in London, so have become very used to living with each other.
“He also hopes that the documentary brings a positive light on disability and being different.
“I wouldn’t be where I am today if I didn’t have a disability.
“If I didn’t have dwarfism, I wouldn’t have been able to go to the Paralympics and have the opportunity to represent my country.”
- Ellie Simmonds: A World Without Dwarfism? is on BBC One on Tuesday, April 5, at 9pm.
Vosoritide, made by American pharmaceutical company BioMarin, is injected nightly, but not everyone is pleased with the revolutionary medicine
Ellie taking part in ballet at the age of 6Credit: Mirrorpix
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