01.09.2014 Feature Article

The #ALSicebucketchallenge and its ethical implications

The ALSicebucketchallenge and its ethical implications
01.09.2014 LISTEN

It's everywhere on the social media. People are talking about it, some are donating and others are having a good fun of it. It's the ALS ice bucket challenge. Many of us perhaps didn't know about this Motor Neuron Diseases (MND). What is it exactly? Why are people throwing cold water on themselves? Are there some ethical implications about the #icebucketchallenge?

Facts about the Amyotrophic Lateral Sclerosis (ALS)

Amyotrophic Lateral Sclerosis (ALS) is a neuromuscular illness. The disease affects the brain and begins to degenerate the nerve cells of the brain and the spinal cord. Patients begin to experience progressive weakness in the muscles since the motor neurons are degenerated to connect the muscles. As health professionals consider the disease as a variable disease, symptoms vary from patient to patient. From the Amyotrophic Lateral Sclerosis Association (ALSA) website, patients may generally experience:

• muscle weakness in one or more of the following: hands, arms, legs or the muscles of speech,

• swallowing or breathing
• twitching (fasciculation) and cramping of muscles, especially those in the hands and feet

• impairment of the use of the arms and legs
• "thick speech" and difficulty in projecting the voice

• in more advanced stages, shortness of breath, difficulty in breathing and swallowing

It's important to note that ALS is a rare illness without any specific cause. The Robert Packard Center for ALS Research at Johns Hopkins has estimated the incidence of ALS as relatively rare; which is roughly 2 people per 100,000 per year.

A report from The Blazeman Foundation for ALS indicated that since 1869 (when French doctor Jean-Martin Charcot first describes ALS symptoms in autopsy patients) the ALS disease death toll exceeds over 21 million with zero survivors. ALSA has estimated that in America, approximately 5,600 people in the U.S. are diagnosed with ALS each year and as many as 30,000 Americans may have the disease at any given time.

The global awareness of this disease is first of its kind and one of the most successful fundraising actions which has raised millions of dollars within a period of three months. But how was it done? What was the magic behind the wonder fundraising?

The ice bucket challenge

The ice bucket challenge is very simple. You need a bucket of ice water or cold water and just pour on your head. After that you have to nominate two or three person to take the challenge. They have 24hours to take the challenge or donate 100 USD to ALSA in place of the challenge. All one needs is someone to video your challenge and share it with your community on the social media.

Who started it?
Many people might not know him but it all started with Pat Quinn a patient of ALS who was raised in New York in Westchester County. He's also a graduate of both Iona Prep and Iona College. Quinn started the ALS ice bucket challenge in July 2014 to raise awareness of the disease. “Quinn for the Win”, a Facebook page for this cause posted on the 25th July:

Have you taken the Challenge??
Supporters of Quinn for the Win are taking the Ice Water Bucket Challenge to spread ALS Awareness!! Here's how it works:

You take the challenge then nominate others to do the same within 24 hours!! If they fail the challenge they must donate $100 to !

Within a month, the challenge gone viral on the social networks and it became unstoppable. The challenge got attention and acceleration when notable celebrities and diplomats like Mark Zuckerberg, Bill Gates and former US President George W. Bush accepted to take the challenge. What began in the USA has expanded throughout the entire world including the Middle East and Asia. Even though it has taken many forms, the ice bucket challenge continues to create awareness of the disease and thousands of dollars are received by the ALSA each blessed day. Currently, the association has raised 100 million USD to further future research on the ALS disease.

Ethical implications
Why ice water?
Obviously there is no connection between the ALS disease and ice water. The only connection that one can create is with its awareness. Since many social media maniacs have an inordinate thirst to do something crazy or dramatic to share with their followers, the social media becomes an effective instrument to keep the challenge trending. Undoubtedly, the ice bucket challenge has really hit its right target. Even now and then people queue in their minds to get nominated whiles each day brings the challenge closer to persons not yet nominated. Also the challenge to pour ice water on the head will definitely compel some people to donate rather since not everyone like cold water. So this blend of fun and solicitation give force to the purpose of the ALS ice bucket challenge. And I'll add that how can you fail to do it when you're surrounded with such a great cloud of fans? Perhaps this question is not for everyone.

Standing for a good cause
Should persons outside the United States take the ice bucket challenge? Zhou Hongyi, a Chinese billionaire, internet entrepreneur and the founder of search portal Qihoo, answers this challenging question. Zhou is among some of the many celebrities around the world who has taken the ice bucket challenge to raise awareness of the ALS disease. Zhou stated on the day of his challenge that “I hope that next time, we can start a similar campaign here in China, encouraging our citizens to donate to a cause. For now we'll participate in someone else's.” Zhou's comment reechoes the golden rule of Jesus Christ “Whatsoever you want men to do unto you, do likewise unto them.” Ones participation in the challenge is standing up for a good cause. Since the ALS disease is a human condition cutting across all continents, it's rewarding if one stands and creates the awareness for further research. You'll never know the next victim. It might be you or a closed by relative.

The ethical challenge
The ethical question that some concerned persons are asking is why water is wastefully thrown on the ground when others suffer good drinking water and scarcity of water?

A recent post on Instagram from Yvonne Nelson, a Ghanaian movie actress and film producer, seems to raise an ethical problem about the ice bucket challenge. She posted on her Instagram probably after she was nominated by someone. She wrote:

“Saysh*t and I'll block you if I see it. SIMPLE! You live in America and think Africa is America? People in my country don't have potable water to drink and you display your ignorance on my post? No one asked you to follow or check my page….. Ilovemyafrica! Ourpartoftheworld”

Another dissatisfaction came from the Korea Times which released a cartoon captioned “The Other Water Bucket Challenge” in protest against the wastage of water by the ice bucket challenge face-à-face with water challenged parts of the world. The cartoon portrays an African girl who is carrying well water drawn from a distance of 3km away. The cartoon further depicts the little girl standing in awe seeing a man taking selfie of his ice bucket challenge. Whoever made this cartoon is no doubt raising an ethical eyebrow about the unrighteousness of pouring water on the ground in the name of ALS disease.

It's true that many parts of the world experience droughts and some are even challenged with clean drinking water. In certain parts of Africa and Asia, the average distance to find water for household activities is six kilometers. Loughborough University reported in 2005 that about 1.1 billion people still do not have adequate access to safe water and 2.4 billion people are without appropriate sanitation. The 2011 and 2012 drought in Somalia, Kenya and Djibouti killed about 260,000 people. The East Africa and certain parts of India have been noted as drought zones. The nerves of persons living within such zones would definitely be sensitized to humiliation to see water being thrown on the ground. And since some have taken it as a fun game, it becomes difficult for others to decipher the truism of the whole action. So it's just like preaching becoming an entertainment.

What do we do then?
To avoid offense and to be sensitive to the plight of other sufferers of clean drinking water and scarcity of water, I've two main propositions to further the cause of the ALS challenge and future fundraising. First, the challenge has provided an option in place of throwing cold water on you; and that is to donate money. It's more blessing giving than receiving as the Bible says. Since it's a fundraising, one is not obliged to give 100 USD at his or her own expense. You can offer what is enough in your hand even if it's 1 USD; after all the purpose of the awareness is to raise money to discover a cure for the disease.

Second, if one still feels the itch to wet him or herself with water, I'll suggest the person throws himself into a swimming pool, the sea, river or lake. In Europe, people take similar challenge by dipping oneself into a river. This can also be a good means to challenge ourselves to stand for social causes.

A word
As we take solace in our technological advancement and in our experts, we gaze with confidence as though nothing is happening around us. Our little planet is rambling in spontaneous crisis. The fear of terrorism. Rise of insurgences in the Middle East, Africa and Eastern Europe. Plane crashes and etc are few stuffs swirling our Earth around. Toping the list is the fatal challenge of the ebola virus which is threatening to become a global menace. In fact our world is stired up with fear and that means we have more challenges to stand for or against. The ALS challenge and awareness campaign must give us a further outlook on the many challenges before and ahead of us. It's time we all learn to have a good conscience to stand for a good cause.

American ALS Association,

Loughborough University,

National Institute of Neurological Disorder and Stroke, “Amyotrophic Lateral Sclerosis (ALS) Fact Sheet.”

Rowland LP (March 2001). "How amyotrophic lateral sclerosis got its name: the clinical-pathologic genius of Jean-Martin Charcot." Arch. Neurol. 58 (3): 512–5.

The Robert Packard Center for ALS Research at Johns Hopkins, “ALS Facts and Statistics.”

Clifford Owusu-Gyamfi, University of Lausanne, Switzerland.