Sitting in a hall where a press conference had just ended, 54-year-old Wu tseng-chueh (吳曾卻) drew a house with her scaled hands. The house, composed of wriggly red crayon lines, had a forlorn touch.
The painting was meant as a present for James Hsueh (薛承泰), director of the Taipei City Government's Department of Social Welfare, who never showed up at an event Friday to raise awareness about ichthyosis -- commonly known as `fish-skin disease.' The house in the painting was also a call for society to open their hearts to these patients, who like everyone else want a `home' -- and want to be accepted.
PHOTO: SEAN CHAO, TAIPEI TIMES
"Sometimes I feel I have no place to go," A-chueh (阿卻), as Wu is known by, said. "People get scared when they see me."
Ichthyosis is a congenital disorder passed down through family inheritance or spontaneous gene mutation. There is no known cure, and few treatment options. The Association of Care for Ichthyosis, who held the press conference, estimates that there are around 1,000 patients in the country with severe forms of the disease.
One cannot "catch" ichthyosis -- it does not spread from person to person. But sadly, few know this. Because of that ignorance, people with the disease pay a heavy emotional price, often shunned by peers, classmates and strangers who discriminate against them because of their appearance.
Social pariahs
A passerby will notice A-chueh at once in a crowd. Her red, lidless eyes and visibly chapped skin set her apart. Unlike healthy people, whose skin renews itself once a fortnight, A-chueh's skin sheds off in flakes every day. Wu spends hours in her bedroom, scrubbing her skin to remove some of the scales, putting on a thick layer of Vaseline to moisturize skin all over her body, and sometimes wrapping her limbs and upper body in stretch film to prevent the Vaseline from drying up too soon.
Because of the disease, A-chueh is highly sensitive to temperature change. In summer, she cannot sweat -- heat is muffled inside the body and her skin reddens. Hot and smothered, A-chueh can barely perform her routine work in a sewing factory. In winter, A-chueh's skin becomes hardened and thick. A slight squat down or turn of the head might cause fissures in her skin. At the most extreme, blood dribbles from her cracked skin. For A-cheuh, physical suffering is so routine that it's become easier to bear. Wu inherited the disease and has grown used to the lifelong illness.
It is society's lack of understanding of ichthyosis that most harms people with the disease. Liu Ling-jang (劉寧江), a social worker at the association, recollected how A-cheuh came in one day to the association's office with tears trickling down her cheeks.
"She told me how shocked one guy was to see her on the bus, his eyes wide open and jaw dropping, backing away from her," Liu said. "She said she wanted to dig a hole and bury herself forever."
As a fundraiser, the association will give a performance in Taipei on Aug. 28 in a bid to erase the stigma attached to fish-skin disease. The play, titled Tear in the Milky Way, tells the true story of singer Chou Mei-feng (周美芳) who finally walks out of depression and sing the famous tune Unforgettable (憶難忘) again with her face and arms wrapped in bandages.
"Not all patients are willing to come out of the dark corner and confront the society like A-cheuh and Chun-wei." said Chen Lee-chin (陳麗琴), director of the association.
"We hope the public can understand the disease better through the play and open their arms to the patients," Chen said.
public apathy
The turnout at the press conference from city officials and the media was lower than expected. The weak response from legislators and Taipei City councilors is particularly frustrating for the Kaohsiung-based support group. Among petitions sent to 225 legislators and 52 Taipei City councilors, only Legislator Tuan Yi-kang (
"We need the public to accept them, and we need our government to care more for them," Ou said, in an impassioned plea at the press conference.
The association said they will use the play's revenue to finance a halfway home in Taipei, which will cost about NT$60 million.
According to the association's secretary-general Chang Wei-sheng (張瑋升), the halfway home will be a place where patients can chat, where they can play, where they can take care of each other.
A-chueh, after two years of unemployment, now finds a job at the association's office in Taipei. "I like sweeping the floor there. I have friends there," A-chueh said.
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