World Health Day: A World without Dwarfism?
Two girls. One planet. Different worlds.
On this World Health Day, I want to highlight the fact that although we may all live on planet Earth, many of us live in different worlds. Eleanor ‘Ellie’ Simmonds and I live in different worlds. Recently, Ellie and I sat together for hours, giving each other glimpses of our own worlds.
I prefer coffee, and Ellie prefers tea.
We were both raised by parents who loved us unconditionally and who made sure we were around peers who shared the same condition, achondroplasia.
We’re both the youngest of our siblings.
We both have a competitive streak.
At age 2, we both discovered what it meant to be passionate about something. Ellie’s passion was swimming; mine was dancing.
Since she was 12, Ellie has been swimming in a glass fishbowl with all eyes on her as she represented the United Kingdom in the Paralympics. At 16, I went from “break a leg!” to breaking legs, literally, and sharing each break and mend on a different stage, under different lights, and in front of a much larger audience than an auditorium.
It was the hardest but most thought-provoking conversation I have ever had. By the end, we concluded that how we live our lives in our own worlds will always be different from someone else’s, regardless of similarities.
We can always do our best to try to understand someone else’s world, but we are only ever going to be the experts of our own lived experience, which, by nature, comes from the waters or stage that our parents provide us. But there will be times when we won’t be able to understand someone else’s world, and that’s okay.
If you’re in the UK, you will hear my and Ellie’s conversation and more on Tuesday, April 5, at 9 PM during the 1-hour BBC One special “Ellie Simmonds: A World Without Dwarfism?” produced by Flicker Productions.
To conclude, do I think there will ever be a world without dwarfism? No, I don’t.
Do [I think] we need to be more accepting and understanding of people’s decisions that they feel are best for their lives? Including parents making decisions for their children, regardless of their stature? Yes, I do. As I’ve said before – parents are the ultimate decision-makers for their children, and 80% of children with achondroplasia are born to parents without the condition. Regardless of whether the parents or caregivers of a child with achondroplasia have the condition themselves or not, it is irrelevant. As the child’s sole caretaker, they decide what they feel is best for the child.
We’re living in the middle of scientific breakthroughs. We have the privilege to educate ourselves and try to understand best how and why some are making this terrifying but exciting decision not to create a world without dwarfism but to care for and raise a child with dwarfism in a world that’s already tough as shit to live through.