The amyotrophic lateral sclerosis (ALS) ice bucket challenge that has been sweeping the nation’s entertainment, financial and political circles has attracted an outpouring of criticism in addition to donations, with some saying what was a well-meaning activity has lost its focus and descended into farce.
Lin Fei-fan (林飛帆), one of the leaders of the Sunflower movement and cofounder of Taiwan March, who is on a speaking tour of North America, yesterday on Facebook criticized some participants for turning the fund-raising activity into “ridiculous slapstick.”
“The original purpose of the challenge was to raise public awareness of ALS and the predicament of its sufferers and to raise money to help those with the progressive neurodegenerative disease... but ever since the activity arrived in Taiwan, it has been turned into a farce by pretentious politicians,” Lin wrote.
Photo: Tsai Shu-yuan, Taipei Times
Lin said none of the politicians who had a bucket of iced water dumped over their heads over the past few days seemed to have given serious thought to what kind of policies they should promote to ensure better care for ALS patients or other disadvantaged groups.
“After [Chinese Nationalist Party (KMT) Taipei mayoral candidate] Sean Lien (連勝文) finished the challenge, all he said was ‘that felt freaking good.’ As for [Minister of Culture] Lung Ying-tai (龍應台) and [New Taipei City Mayor] Eric Chu (朱立倫), they were just busy nominating others to take the challenge,” Lin wrote.
Even former premier Yu Shyi-kun, who recently challenged Lin to the ice-bucket treatment after doing it himself, only managed to utter the meaningless slogan: “Let’s spread the love,” Lin wrote.
Photo: Tsai Shu-yuan, Taipei Times
Lin also criticized Hon Hai chairman Terry Gou (郭台銘), who nominated supermodel Lin Chi-ling (林志玲) after he completed the task on Tuesday and asked her to “dress revealingly” when undertaking the challenge.
“Gou’s remarks are beyond the lowest of the low and have redefined vulgarity,” Lin wrote, urging the business tycoon to fulfill his corporate social responsibility rather than making “off-color remarks.”
Hsieh Fon-jou (謝豐舟), a former professor at National Taiwan University’s College of Medicine, also took to Facebook late on Tuesday to urge people to refrain from capitalizing on the rare disease.
“From [National Development Council Minister] Kuan Chung-ming (管中閔) and Lien to [Health Promotion Administration Director] Chiu Shu-ti (邱淑媞), everyone seems to be trying to use the challenge to get themselves into the limelight. Gou even asked Lin Chi-ling to do the challenge in a revealing dress,” Hsieh wrote. “It is self-evident that these people have turned a well-meant activity aimed at boosting public awareness of a rare illness into an outlet for their desires.”
Hsieh said patients with rare diseases and their families not only have to battle the illness, but also endure stigmas attached to their condition.
“In some families, there is more than one person suffering from the rare genetic illness due to their limited medical knowledge and resources. They are living in purgatory,” Hsieh wrote. “They deserve the public’s attention and assistance, not to be used for publicity purposes.”
Democratic Progressive Party Department of Women’s Development director Lin Ching-yi (林靜儀), an obstetrician-gynecologist, also deplored Gou’s remarks, which she said had sent a message that “a woman’s obligation in the activity is to expose her body to entertain the public.”
Independent Taipei Mayoral candidate and writer Neil Peng (馮光遠) expressed disappointment that the activity has drifted away from its core purpose and become entertainment-oriented.
“Sure, charity events like the ice bucket challenge can be fun and interesting, but letting the fun side steal all the attention away from the serious stuff is not what people should be doing,” Peng said.
When reached for comment, Taiwan Motor Neuron Disease Association president Liu Yen-chu (劉延鉅) said the association welcomes any event or activity that can help increase people’s understanding of the disease.
“The association has endeavored to increase public awareness of ALS over the past 17 years, but a survey we conducted a few years ago showed that only 2 to 3 percent of respondents were aware of the disease,” Liu said.
Liu said the ice bucket challenge had helped attract a total of 113 donations amounting to NT$336,220 from Sunday to Tuesday, nearly three times the amount the association used to receive in three days before the challenge.
“However, what really matters is not the money, but the fact that more people have an understanding of the illness and the difficulties that people with it go through,” Liu said.
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