Naomi Vides had just begun what would become a 20-year club swimming career when her sister Nadya was born. Nadya was diagnosed with Rett Syndrome, a genetic disorder which causes severe physical and mental disabilities, including impaired movement and communication. Naomi would go on to complete a solo Channel swim, while Nadya was never expected to be able to swim – until she was left to her own devices in the pool one day.
No one thought Nadya would ever be able to swim. Floating horizontally and being submerged in water are two things in a long list that my younger sister, who has a rare genetic disorder called Rett Syndrome, finds deeply uncomfortable. Years of ‘Learn To Swim’ lessons yielded little, if any, improvement. Nonetheless, Nadya enjoyed trips to the swimming pool, splashing around in the shallow end, so we’d take her almost every weekend. One day, when she was 11, she slowly made her way towards the deep end while we were chatting. We were not paying attention. She went deeper and deeper until her feet no longer touched the bottom of the pool. When we looked over, she was past the “no non-swimmers” sign and her face was barely above the surface. We panicked and rushed towards her, but she wasn’t sinking. In fact, she actually seemed quite pleased with herself.
That was the first time Nadya swam. She proved us all wrong, and she did it her own way. It wasn’t freestyle, or breaststroke, and I’m not sure it would even be right to call it doggy paddle, but it kept her head above the water and a smile on her face.
Today, Nadya is a kind, funny and wise 20-year-old woman. In some ways she is held back by her disability, but in many others it gives her a totally unique perspective on life. She is able to walk, and is reasonably mobile, but can’t talk, struggles to communicate consistently and requires 24/7 care. Although she knows what she wants, she is usually unable to communicate in the manner or time frame the world demands of her. On the flip side, she expresses both her pain and her joy with total authenticity. Either unaware or unbothered by the social conventions, she will happily scream for joy, whether she’s at home or in public.
Nadya and I have always loved water. She was born when we lived in Bermuda and I was just about to turn six. In Bermuda, where the beach is never more than 10 minutes away, and pretty much everyone’s house has a pool, she would happily splash around in her rubber ring – but would never put her face under the water. Meanwhile, I was starting what became almost 20 years of club swimming. I remember vividly the outdoor pool where my club trained; butterfly sets on Sunday afternoons, Friday evenings doing backstroke looking up at the stars, early mornings before school, weekends of racing, breaking Bermudian age group records.
Nadya was born when I was just about to turn six… she would happily splash around in her rubber ring – but would never put her face under the water. Meanwhile, I was starting what became almost 20 years of club swimming.
When we moved to Bournemouth when Nadya was five, she tried a range of different swimming lessons, but most teachers felt she could never progress because she wouldn’t put her head under the water. Meanwhile, I was progressing well, training before and after school and an early growth spurt led to me becoming national age group breaststroke champion when I was 11 and 12. Busy leisure centres were like a second home to me growing up, but for Nadya (and many other people with autism) they are sensory nightmares: bright lights, echoing noises, slippery surfaces, and strict timelines. Eventually we stopped taking her to swimming lessons and opted instead for the Saturday evening disabled swimming hours, where the empty changing rooms and quieter pool allowed her the time she needed to transition slowly.
I continued swimming throughout my teens and at university. I did the Brownsea Island swim with my dad every summer and swam the Channel solo aged 22. When I was training for the Channel, and spending a lot of time back at home, I made it my mission to get Nadya in the sea. It took a few stubborn attempts, and I did have to carry my then sixteen-year-old, fortunately sub-5ft sister on my hip, but we managed it. Like so many things in Nadya’s life, she is eminently capable, but limited by exterior influences. In contrast, my life has been barely limited at all. I’ve had a wealth of sporting success owing to a wealth of opportunities. For Nadya, apart from walking, swimming is the only way she can stay active – which is crucial just to keep her mobile and allow her to maintain the limited independence she does have.
When I was training for the Channel swim, I made it my mission to get Nadya in the sea. It took a few stubborn attempts, and I did have to carry my then 16-year-old, fortunately sub-5ft sister on my hip, but we managed it.
Access to sport and physical activity for disabled people has improved massively: the Paralympics and Invictus games have grown in popularity, amazing charities like Level Water provide specialist disability swimming lessons to children in the UK, and many sports, gyms and leisure centres have become aware of accessibility needs. I can only commend all these initiatives. Nonetheless, I feel that people like Nadya – people with more complex accessibility needs – are forgotten. For example, no sport in the Paralympics would be possible for Nadya, many disabled swim groups would not accept Nadya, and many leisure centres that have tried to be accessible have really only considered physical accessibility needs. Just because a wheelchair user can get into the pool or the sea doesn’t mean that space has been made accessible to all disabled people.
Despite these obstacles, Nadya has persevered with her swimming and achieved things no one thought she could. Living with her has been a constant reminder to me that whatever swimming challenges I take on, whatever my fears are, hers are greater and more justified, and her daily life is harder than anything I’ll experience as a non-disabled person. I am inspired by Nadya, but this story is not intended to be inspiration porn (a term coined to describe the portrayal of disabled people as solely inspirational). This story is intended to recognise Nadya as a multi-faceted adult, who loves swimming, like we all do, but for whom many more barriers to swimming exist.
Even now, every time a new school or department assesses Nadya’s physical ability, they assume she can’t swim. One by one, she proves them wrong. To the outside world it looks like she’s barely staying afloat, but actually she’s completely at peace – water is the space in which she feels most free.