By T. Jayani, JadeTimes News
In an effort to preempt awkward questions and stares, Jono Lancaster always greets everyone he meets with a smile and a hello. "I'm creating a positive interaction before they even see me, or say anything, or think anything. I'm taking ownership of it," he explained.
Jono has Treacher Collins syndrome, a genetic condition affecting the development of the facial skeleton, cheekbones, jaws, palate, and mouth. He is one of several individuals with visible differences featured in the "Rarely Reframed" project by Welsh photographer Ceridwen Hughes. The portraits, inspired by Dutch Master paintings, aim to tell the stories of those rarely positively depicted in art and challenge our biases toward supposed perfection.
Jono, 39, from Normanton in West Yorkshire, accepts that people, especially children, will always be curious. He recalled a recent school visit where a child bluntly remarked on his appearance. "I was born like this," he responded, to which the child nonchalantly replied and moved on to show him the playground. Jono anticipates similar encounters during his upcoming travel to the US, particularly at airports.
Despite the constant need for proactive engagement, Jono finds respite in solitude. "One of my self care routines is sitting at home without a smile on my face," he laughed. He understands the importance of recharging after continual social interactions.
When advising parents on how to react to their child's curiosity about visible differences, Jono suggests turning it into a positive experience. "Once they have a bit of knowledge or an answer, kids usually move on," he said, warning against shushing them, which only heightens curiosity.
Amba Smith, another participant in the exhibition, has a birthmark that extends from her head to her toes and affects her internal organs. The 23 year old from Sleaford, Lincolnshire, recounted an early experience where a parent beautifully handled a child's curiosity about her birthmark, describing it as "pretty," which the child readily accepted.
Amba, who has Sturge Weber Syndrome, described her journey of self acceptance as ongoing, with progress often feeling like "one step forward and three steps back." From a young age, she used camouflage makeup and covered her birthmark with clothing. Now, while she still sometimes covers up on bad days, she also enjoys using makeup creatively. Films like "Wonder" and "The Greatest Showman" were turning points in her self perception, as was meeting others with visible differences striving to redefine beauty standards.
Katja Taits, 23, from St Albans, Hertfordshire, has Moebius Syndrome, causing facial paralysis. She shared that although she wasn't bullied, she faced misconceptions about her abilities, such as being given oversized printouts despite being able to read normal text. This singling out frustrated her. Now more self accepting, she still finds herself engaging with strangers to manage interactions. "It would be nice if we didn't have to make such an effort just to exist in public spaces," she said.
Photographer Ceridwen Hughes, from Mold in Flintshire, whose son shares Katja's condition, runs the non profit group Same But Different. Her exhibition is featured in the latest edition of the online magazine "Rarity Life," but she hopes to see such images become commonplace in exhibitions and galleries. "It would be nice if these projects weren't needed, but we still need to give a stronger voice to those not seen every day," she stated.
Jono remains optimistic about the future of representation. "This generation in 2024 is loving themselves and celebrating their uniqueness," he said. "Our unique features, personalities, and characters need to be celebrated, not hidden."
