Hunted in East Africa for their body parts and portrayed as scoundrels by Hollywood, people with albinism are often deeply misunderstood around the world. A rare genetic disorder, albinism is the absence of pigment in the skin, hair and iris of the eyes. And with it comes a host of physical hurdles—low vision, rapid eye movement, highly sensitive skin, and depth perception issues. Add to this equation the psychological challenges of looking so markedly different, and you have a complicated existence. In China, for example, the disorder is considered bad luck, leaving people with albinism ostracized and excluded from mainstream society. There’s no schooling, no job prospects, and rarely marriage or family. It’s a lonely, isolated way of life, to say the least. Here, six stories open the door to the trials, tribulations and sometimes joys of their determination to lead a normal life.
Chen Guang, the 35-year-old director of the Chinese Organization for Albinism (COA), doesn’t mince words: “Most people like us are considered inferior in China. Even if we meet our true love, we may sit tight and do nothing, because we are afraid of being refused.”
He once met a healthy girl he liked very much. “We lived very near each other and we often hung out together. But I never had the courage to tell her that I liked her. In the end, she married someone else.”
At her wedding, Chen cried. He regretted not speaking out.
In fact, the biggest obstacle to an individual with albinism finding partners is parental opposition. Gong Zeyi is a famous singer among albinos.
He met Huang Jin, a non-albino, when he competed in the finals of a talent show in 2010. They fell instantly in love. Huang Jin sacrificed a lot to be with Gong Zeyi. She gave up her dream to sing with the Peking Opera in order to help him. “Gong Zeyi is not sociable,” she says. “He does not have a family to support him, so I need to accompany him and give him a hand when needed.”
However, their relationship did not receive the blessings of Huang Jin’s family. Her father did not approve of her marrying Gong because albinism is a genetic disorder, which he felt would harm any children they might have. Although the couple tried all sorts of ways to persuade her father, their efforts were in vain. They began to fight and quarrel over the issue.
Months later, they broke up.
Wen Jinsheng is also a singer from Guang Xi Province. Unlike other albinos, he firmly believes he will marry a girl one day. “I am not any different from others except for my hair and complexion. That’s all.”
Wen Jinsheng moved to Beijing because he could not find a job in Shenzhen, where he met his girlfriend Shen Wenjing, who had met the special looking stranger three times. The first time was outside of Beijing’s National Stadium. The second time was at a crossroads when Wen Jinsheng was lost in his singing and she gave him 20 yuan. The third time was in a subway food court. After a few words, Wenjing asked him: “Do you have a girlfriend?”
“No,” he replied.
“How about me?” she asked.
Wen Jinsheng rose to his feet and looked the girl up and down, then said: “Okay.”
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This story is part of a series of articles published as an exclusive editorial exchange between China Press for People with Disabilities & Spring Breeze and ABILITY Magazine.