By Nathalie Bonney @nathaliebonney
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Videographer / director: Travis Mays
Producer: Katie Mercer, Ruby Coote
Editor: Grant Hanson-Vaux
Scarlet Checkers has Ehlers-Danlos Syndrome (EDS) – a rare collagen disorder characterised by unusually stretchy skin and flexible joints – and could be confined to a wheelchair in the next 10 years.
But rather than let the condition get her down, the 23-year-old has used it to her advantage, performing as a contortionist for her local community and wowing crowds with her incredible body manipulations.
Scarlet, who was diagnosed with the condition just one year ago, told Barcroft Media: “I didn’t want to turn my diagnosis into a pity party.
“Of course there are lots of things that are not great about having Ehlers-Danlos Syndrome, but I didn’t want it to stop me from living my life.”
Although Scarlet was only diagnosed last year, she has always been able to manipulate her body in weird and wonderful ways, and started training as a contortionist at the age of 18.
She said: “Growing up I didn’t know that I had a genetic condition, I just thought I was naturally very flexible. I would stay in strange positions at the dinner table because it was what was most comfortable for me.
“My step mom would yell at me. But instead of like, ‘Elbows off the table'. It was more like, ‘Get your feet off the table’.”
Moving from Philadelphia to San Diego two years ago, Scarlet now performs her unique contortion comedy act alongside three other members of The Birthday Party variety show troupe.
In her younger years, Scarlet was fascinated by the circus, and has carried that passion forward by performing in clown make-up for her variety show appearances.
Dubbing herself a ‘clowntortionist’, her unique act also involves performing stunts like putting tarantulas in her mouth and driving needles through her skin.
She says part of her work is about raising awareness of EDS, as it is a difficult condition to diagnose and is often considered an 'invisible disease'.
But despite Scarlet’s positive approach to her condition, she still suffers from headaches, dizziness, and chronic pain – occasionally having to use a wheelchair to get around.
Scarlet knows that she could be wholly reliant on her wheelchair in the years to come, and is fully aware of the challenges she could face.
She said: “Just walking around town, like if I just step wrong, I could just snap my ankle out of place. My knees really give me a lot of trouble. Just pain-wise my knees hurt really bad. My knuckles and my fingers hurt. I’m like a grandma.
“Somedays I just can’t do anything with my body. That’s when my boyfriend pushes me up to the store to get a burrito.”
The specific type of EDS that Scarlet has is a type-3 hyper mobility collagen disorder that affects all her connective tissue, joints, ligaments, muscles, and skin.
There is currently no treatment or cure for the condition, as it manifests differently in every person.
But the ‘clowntortionist’ remains optimistic, adding: “I know my body and I know my limits. My goals are always short-term. I know that I might be permanently in a wheelchair in the next 10 years, so I don’t think about the future of my career much.
“I just know what I love doing now and that I’m not going to stop anytime soon.”
It’s an approach that works well for Scarlet, but which has drawn some criticism for others suffering with EDS, who say Scarlet’s career as a ‘clowntortionist’ isn’t the best way to deal with the condition.
She continued: “I tend to get some backslash from the EDS community sometimes because they are thinking I am setting a bad example for other people with EDS.
“There is a safe way to contort while also having EDS, and that really is just being aware of your own body and what your limits are and listening to your body when it tells you, ‘No that’s the thing that you can do’.
“I would really like the EDS community to appreciate that we all are different.”
And her friends certainly agree that Scarlet in on the right track. Fellow Birthday Party performer ‘Olive-It Thee Clowne' said: “I think Scarlett is really inspiring because she has got this crazy disease and uses it as an advantage which is really awesome. Super impressive.”
For now, Scarlet plans to continue performing and doing what she loves.
She said: “My goal is really to make people feel something – some sort of extreme intense emotion. [Being a contortionist} is pretty much my whole life.
"I really enjoy performing, I really enjoy contortion, and I really enjoy making people laugh.”