Additional Reporting by Emily Chazen.
As the class of 2018 arrived on Haverford’s campus in late August, so did the news that President Daniel Weiss would be participating in the ALS ice bucket challenge. The goal of this national campaign, which went viral in July, is to spread awareness of the neurodegenerative disease Amyotrophic Lateral Sclerosis (ALS) and to fundraise for ALS charities.
ALS, a disease characterized by rapid atrophy of the muscles, has a history far deeper than its recent ascension into the public sphere. With no known cause or cure, ALS causes individuals great difficulty in speaking, swallowing, and breathing. Most people who contract the disease die within a couple years, with fewer than 5% living with it for more than ten years.
The ALS ice bucket challenge is straightforward: if nominated, one must dump a bucket of ice-cold water on his or her head and post a video of it on the internet, or donate money to support ALS research within 24 hours of being nominated. The participant must then nominate others to do the challenge.
The campaign has attracted countless celebrities, politicians, and individuals from around the world. According to a recent Huffington Post article, the challenge had raised $111.6 million for ALS research as of September 10.
Seeing the momentum that the ice bucket challenge had gained on the internet, Maggie Perkoff ‘15 took advantage of the challenge to nominate Weiss. In accepting the challenge, Weiss encouraged students to take a step further: the president pledged to donate $500 and complete the challenge on Founder’s Green if the student body could also raise $500. The student body surpassed this to raise a total of $1,213 in 25 days.
“I consider this [fundraising] a success, but I think that it would be great to continue to raise more funds over time,” said Perkoff, who has been raising money for ALS research for the past two years through cookies sales.
“I do not think that the ALS ice bucket challenge is necessarily educating the American population on the disease itself,” Perkoff added. “However, I do not think that that was the goal. In my opinion, this sort of fundraising is meant to raise money quickly and raise money from people who would not ordinarily go out of their way to donate.”
Perkoff is not the only one who questions how much longer the challenge will last, and what public discourse will be like after it fades. Some believe the hype surrounding the ice bucket challenge to be insensitive due to the grim nature of the disease, while others resist it on the grounds that it is “slacktivism”. (The Online Oxford Dictionary defines slacktivism as “actions performed via the internet in support of a political or social cause but regarded as requiring little time or involvement.”) However, others view it as an opportunity not only to raise money, but to educate others about ALS, the knowledge from which hopefully outlasts the trendiness of the challenge.
Elliott Schwartz ‘14, whose father contracted ALS at the age of 34, is of the latter opinion. His father, Joe Schwartz ‘83, died from ALS in 2008 after battling it for 13 years. The Joe Schwartz Memorial ‘83 3k Run/Walk has taken place annually on campus since his death to both honor the former Haverford cross country and track runner, and to raise money for ALS research. This past spring, the race attracted 255 participants and amassed over $10,000, both of which were event records.
In response to its widespread news presence as of late, Elliott agreed to share his experience living with someone with ALS, as well as his general views on “slacktivism” with The Clerk. The following is an excerpt from his interview:
I was 3 years old when my dad got diagnosed with ALS. Most of the degeneration happens within the first year, so I have very few memories of when he was healthy. He could mumble out words, but it was really difficult to understand anything. He did most of his communication through a computer by blinking to select letters.
All of that sounds horrible and morbid, and it is. But since I never really knew my dad any other way, I’ve rarely thought about his disease in terms of the absence of his former physical abilities. Instead, I knew him through his intellect and his love. That’s not a bad way at all to get to know someone, although it does leave out certain parts of the typical American father role that had to be filled by my mom and other people in my life.
Growing up while my dad fought ALS was also inspirational, in a way. I’ve always been told by my mom and his college friends that he was a really tough runner, and my mom was certain that his toughness as a runner (and his general stubbornness) is the reason he survived with ALS for 13 years instead of 2. I don’t know how true that is, and I don’t know the science of why some people with ALS live longer than others. But it’s been a nice story to tell myself growing up, and now that my dad’s not around anymore, stories are all I have to go on.
I’m tremendously grateful that ALS left his mind intact. He was a wonderful father, and thanks to a bit of cobbled together technology, he was able to share his thoughts with me for 16 years. I struggled with understanding disability while I was growing up, but I think I’ve gotten over that. I wish there were a cure for ALS, but at the very least, it would be nice to find a medication to stop the progression so that people could live, albeit without as much physical ability, as long as the rest of us.
When asked directly about his views on the ice bucket challenge, Schwartz noted that he supported the amount of media attention ALS has received because of it. The challenge has brought in an incredible amount of money through a medium which is both accessible and appealing to people of all ages, he added, even if they are ignorant about the disease itself. While the challenge “should not replace more meaningful contributions to charity”, Schwartz said, it has shed light on the disease, and through its publicity has given those who may not have known much about it a reason to wonder, research, and learn more about it.
As shown by Schwartz, the rise of the ice bucket challenge has also given those familiar with ALS a platform through which to impart their wisdom, share their stories, and filter the influx of videos with relevant information. As research stands now, this enigmatic illness inevitably strips away one’s mobility until there is none. Yet, for every bucket of ice dumped, one more step is taken towards finding a cure.