Good Friday. Stigma – “a mark of disgrace associated with a particular circumstance, quality, or person” … but often better viewed in the Christian tradition: the marks corresponding to those left on Christ’s body by the Crucifixion, said to have been impressed by divine favour on the bodies of St Francis of Assisi and others. Regardless of anyone’s faith, a timely moment to consider the work of Love Disfigure and the creation of a swimming club that is raising awareness and providing support for those with disfigurements. Happy Easter to all our readers
It was the 1980s and in East London a young girl called Sylvia Mac was rising through the swimming ranks, 1980 Olympic 400IM silver medallist Sharron Davies her inspiration as she toiled up and down following the black line.
A backstroke and breaststroke specialist, Sylvia competed at league and county meets and a fine swimming career appeared to beckon.
But it was not to be as the consequences – physical and mental – of a childhood accident stopped her in her tracks.
When Sylvia was three she fell into a bowl of boiling water at her home and suffered third and fourth-degree burns over her back and body.
She learned to swim at eight and the water became a refuge but on poolside it was a different matter with her scars exposed, an intense lack of confidence compounded by the cruel whispers of others who would call her ‘snakeskin’ and ‘witch’.
So lacking in self-esteem was she that she would talk herself out of finishing in the medals because she would have to stand on the podium in her costume. She says:
“I waited in the changing room until everyone had climbed into the pool so was always late and in trouble with the coach. I would then stay in the pool until everyone had left to get changed. When the coach pulled us out of the pool, I would pretend to have cramp or stitch and hide in the water. I even walked sideways so the parents couldn’t laugh at me or see my burns.
“My mental health was affected and all the wonderful low back costumes didn’t help me with my confidence, I hated them. I don’t remember winning any medals because of low self-esteem, anxiety and lacking confidence.”
There were years of struggle for Sylvia, marked by depression, anxiety and post-traumatic stress disorder and a descent into alcoholism.
But a determination no-one else should suffer what she has endured led her to set up Love Disfigure in September 2016, an initiative to bring awareness and provide support to those with disfigurements.
She set up swimming groups for burns survivors at Highbury Pool, Islington with help from local operators Better Leisure.
“This isn’t rocket science and for years we as swimmers, coaches and teachers have spoken about water confidence but in the real world we should be dealing with body confidence from reception to the changing room and into the pool.”
Armed with no financial assistance, the 49-year-old has become a formidable campaigner with former idol Davies a vocal supporter.
She has just unveiled the Love Disfigure photo campaign featuring men, women and children with a variety of conditions and disfigurements including facial palsy, scars, alopecia, vitiligo, eczema, birthmarks, psoriasis and acne.
All in swimwear with the double-pronged aim of challenging the fashion industry to become more inclusive of people with disfigurement/differences and to encourage leisure centres to use the images and support everybody to participate in swimming.
Sylvia’s story is one of darkness and light, despair and hope with water and swimming running through it.
Following her accident, Sylvia was twice given the Last Rites and spent three months in a dark, pre-war hospital on a mixed ward with people of all ages and all swathed in bandages, any sleep punctuated by nightmares.
She would return for surgery and skin grafts, at times a case study for student nurses and asked to stand naked on a bed.
Shy and stripped of any confidence, Sylvia missed a lot of her early school years and was detached from her peers, her family and fiercely-protective sister Sheila her sanctuary.
Her father was adamant she should learn to swim, something she dreaded, but the kindness and enthusiasm of her teacher Brenda Humphreys at the YWCA on Tottenham Court Road, central London, led to her finding refuge in the water.
It was like therapy.
“I knew I could talk to people in the water and they wouldn’t look at me and go ‘oh, you’re burnt’. I knew it was a friendly place to be.”
She joined the Bethnal Green Sharks Swimming Club, finding happiness in the pool but her lack of self-esteem, as well as the cruelty of others, brought her competitive career to an end.
Every aspect of her life was affected. She would walk away from exams and job interviews, convincing herself she was a failure, and was certain no man would ever find her attractive.
That changed when she was 17 when she met Leon with whom she would go on to have three children – daughters Naomi – herself a mum to little boy Avery – and Tajuana as well as son Elisha.
But she would walk away from exams and job interviews, convincing herself she was a failure, finding she was happy when drinking only for the after-effects to add another layer of self-loathing, a cycle of self-destruction that ended in 2002 when 10-year-old Naomi pleaded with her to stop.
Sylvia became a swimming teacher and coach but that was curtailed after a year when she got pain in her back and was unable to bend down to pick up the floats because of her burns.
Time moved on but 2016 was a watershed. On holiday with her mother, Sylvia donned a bikini but at the hotel pool she was followed by a man who filmed her burns on his phone.
It was not the first time that had happened but it proved to be a pivotal moment.
There were still a lot of tears and she would lock herself away, crying non-stop, but she had hit rock-bottom, her lowest point cementing her resolve.
And so she set about launching Love Disfigure. She completed a challenge to swim 25 lengths of 25 different pools around London in 25 days, finishing at the Aquatics Centre in the Olympic Park and raising £735 in the process for charity.
Her swimming group continues apace, the benefits clear to see.
She says: “One of my ladies couldn’t even get past the front entrance of the leisure centre and I had to go out in my costume in the winter months to encourage her to walk with me on poolside. I still continue my swims but I want to work around helping people that lack body confidence to become more accepting of their bodies
“I believe families together should experience swimming and having fun. My swimmers know that once they’re in the water they are happy, no one is staring and they are having fun.
“I have experienced first-hand hating my body to loving my body.
“Nowadays you will find me wearing bikinis and open back costumes swimming in my ex swimming club where I was bullied years ago.
“I now swim with the Masters and feel great. On my social media sites I now have people that dislike their bodies becoming inspired by me and sharing their swim pool pics in their costumes.
“It’s great to know that I am inspiring more than one group of people.
“Mental health is a huge issue and swimming can certainly help in combating some of these problems.”
Where you can learn more and lend your support:
- Lovedisfigure: the website
- Twitter: @LoveDisfigure