Samuel Gibson is so small he can't reach a kitchen bench unaided. Most of his bones have been fractured by a rare disease. Yet his life of adventure and creativity is a declaration that he is not disabled.
"I live in a world where nothing fits. I am 3 feet tall and wheelchair reliant but am anything but disabled," says the 39-year-old.
Samuel was born with a rare condition called osteogenesis imperfecta, a genetic disorder that makes for brittle bones that fracture easily. He says some with the disease do not survive beyond birth, others are largely unaffected. He estimates there are only a handful of New Zealanders with his type of the condition. There is no cure, although some surgical treatments are used to strengthen bones and some medications are being tried.
Samuel recalls the constant, painful bone fractures of his childhood and teenage years, which are now less frequent.
"One time I came off a motorbike as a teenage boy ... I broke my arm and all the ribs down one side and the femur and knee." Another time he was leaning forward across a seatbelt when his mother had to stop the car. "That was enough to break ribs, arms and both legs."
But Samuel has never let his condition define him. "The label 'disabled' is a very negative word. To define someone as disabled, that's pretty tough, especially for a kid. I don't think anyone who knows me that well would suggest that word really fits."
So how does Samuel define himself?
