The amyotrophic lateral sclerosis (ALS) Ice Bucket Challenge has made waves across the world; Taiwan has also caught on, and the public in the past few days has been treated to reports in media outlets of celebrities, athletes, politicians and big-shot billionaires getting doused with buckets of ice water “for a good cause,” raising awareness and funds for ALS, also known as Lou Gehrig’s disease.
While the challenge continues to attract the participation of more household names, the well-meant activity, of late, has seemingly descended into a circus, drifting away from the original purpose of boosting public understanding about this rare genetic illness.
Take, for example, the participation of people like Chinese Nationalist Party (KMT) Taipei mayoral candidate Sean Lien (連勝文), who, after finishing the challenge, shouted that “it felt freaking good,” an expression that totally defeats the purpose of the activity.
The idea is that one experiences a degree of physical discomfort and tingling numbness and is thereby able to empathize with the agony patients suffering from this progressive neurodegenerative disease go through. Then there are some who only appear eager to name others to take the challenge, seemingly treating the activity as a quick and cheap way to gain media exposure.
While the challenge of splashing ice water onto one’s head can be enjoyable, the fun should not steal all attention from the serious stuff, let alone making it a “showboating” activity.
As Taipei City councilor Rosalia Wu (吳思瑤) rightly put it: “When a charity campaign becomes a celebrity PR activity, those who benefit from it are not the disadvantaged.”
By all means, the ALS Ice Bucket challenge is a creative way to spread awareness of ALS, through the method in which people dunk ice water on their heads and then nominate others to accept the challenge within the next 24 hours and make a donation to ALS. Coupled with A-list celebrities who rose to the occasion and played their part for charity, the celebrity endorsement certainly has been helpful in enabling members of the public who have no prior knowledge about this disease to gain an understanding of the illness and the difficulties that ALS sufferers go through.
According to the ALS Association, there is no treatment or cure for ALS, which attacks the nerve cells controlling voluntary muscle movement. While ALS patients do not lose their mental facilities, the disease gradually robs its victims of their freedom to move, speak, swallow and eventually breathe.
For ALS patients and their families, the ALS Ice Bucket Challenge certainly helps provide a great morale boost, as they can take comfort in knowing that members of the public care about them, spread ALS awareness and raise funds, thereby allowing greater research into the disease.
According to the Taiwan Motor Neuron Disease Association, the Ice Bucket Challenge helped attract a total of 113 donations amounting to NT$336,220 (US$11,196) from Sunday through Tuesday, nearly three times the amount the association used to receive in three days before the challenge.
This type of fund-raising and the current Ice Bucket Challenge fad can be short-lived. Can the funds raised truly mitigate the financial burden of ALS sufferers? Does the nation currently have enough trained manpower to care for those suffering from ALS and other rare diseases? What are the plans for cultivating the necessary number of caregivers needed for a long-term care system? All these are serious issues that need long-term planning and well-conceived policies to be able to provide substantial assistance to families of ALS sufferers.
It is to be hoped that through the Ice Bucket Challenge, all those who take up the challenge, as well as the general public, can truly acquaint themselves with ALS awareness and provide genuine help and care to not just ALS sufferers, but all disadvantaged groups.
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