Jono Lancaster, a man with Treacher Collins syndrome, a condition that affects facial development, has posed for the Rarely Reframed exhibition. The project, by photographer Ceridwen Hughes, is inspired by Dutch Masters paintings and aims to highlight the positive stories of those living with visible differences in society. Lancaster, who lives in West Yorkshire, has taken to proactively smiling and interacting with people, particularly children, as a way to combat awkward stares and questions about his appearance.
Amba Smith, from Sleaford, Lincolnshire, also features in the exhibition, which seeks to question societal biases towards supposed perfection. Smith has Sturge-Weber Syndrome, a condition which causes a large visible birthmark. The 23-year-old believes that self-acceptance is an ongoing journey and reveals that films such as The Greatest Showman and Wonder were turning points in making her feel positive about herself.
Avril Coelho, who has Parry-Romberg Syndrome, a rare condition affecting the face and skin, and Katja Taits, who has Moebius Syndrome, a condition causing facial paralysis, also took part in the project. Taits revealed how she struggled with people’s misconceptions of her competency, while Coelho recounted how she used camouflage make-up as a child to hide her condition.
Photographer Ceridwen Hughes wants to see images from the exhibition sitting alongside those of people without visible differences. She believes that such projects still need to happen until people with visible differences are as commonly accepted in our society as those without.
Lancaster is optimistic about future generations celebrating themselves and their unique differences, stating that everyone should be celebrated and not hidden, and that everyone has unique stamps on their bodies, faces, personalities, and characters
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