The Widely-Criticized ALS Ice Bucket Challenge Funded Discovery Of Significant Gene

Two years ago, our Instagram and Facebook feeds were dominated by our coworkers, weird uncles, and old friends posting videos of full buckets of icey water being dumped on their heads. You may have thought the challenge was silly, but the money raised from the ALS Ice Bucket Challenge, a global social media campaign, just helped fund the discovery of a significant gene, NEK1. This is one of the most common genes that contributes to the disease, and is associated with 3% of ALS cases.

The Ice Bucket Challenge wasn’t your average social media trend, however. It aimed to spread awareness of Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease, which affects the function of nerves and muscles. Many people had never even heard of the disease before the Challenge.

The premise was simple: if your friend “nominated” you via Facebook or Instagram video, you either had to donate to the ALS Association or post a video of yourself getting the frigid water dumped on your head. Many people did both.

More than 2.4 million tagged videos circulated on Facebook, and the efforts raised $115 million for the ALS Association.

Here’s a breakdown of where the funds from the Ice Bucket Challenge went:

  • $77 million (67%) to Research

  • $23 million (20%) to Patient and Community Services

  • $23 million (9%) to Public and Professional Education

  • $3 million (2%) to Fundraising

  • $2 million (about 2%) to External Processing Fees

Project MinE, a research initiative devoted to finding information linked to ALS, is credited with discovering the gene.

People mocked the Challenge when it gained traction, calling it “slacktivism,” the notion of attempting to feel good about helping out without actually doing anything meaningful. Many criticized the Ice Bucket Challenge for being a waste of water, and believed that monetary contributions could better go toward a larger, less niche cause.

And yet, this breakthrough shows that even when our philanthropic efforts are criticized, some good can come out of it. Whether you got ice dumped on your head, donated to the ALS foundation, or watched it all go by and spread awareness via word of mouth, these contribution efforts paid off.

Maybe sometimes “slacktivism” is effective after all.

What ‘Master Of None’ Can Teach You About Social Justice

It’s no surprise that the TV industry doesn’t fairly represent the diverse American population. All too often, Hispanic and Latino men are portrayed as criminals or immigrants, black men and women are given a “token” role, or women represent sidekicks and secretaries.

Parks and Recreation actor Aziz Ansari wrote in a New York Times article in November, “Even at a time when minorities account for almost 40 percent of the American population, when Hollywood wants an ‘everyman,’ what it really wants is a straight white guy. But a straight white guy is not every man. The ‘everyman’ is everybody.”

That notion is what inspired Ansari and his co-director, Alan Yang, to put together Master of None, a 10-episode comedic series that makes an intentional, dedicated effort to cast a diverse array of characters and paint issues that aren’t often talked about in entertainment television. Ansari and Yang, a former Parks and Recreation actor and writer, crafted the TV show in a way that shows real issues in a multi-dimensional yet unglorified way. For example, the series depicts real struggles of relationships that aren’t so often portrayed on TV: taking Plan B after an awkward one-night-stand, questioning if you’re ready to marry your long-term partner, and arguing over whether you can handle doing long-distance if you take that promotion at work.

But beyond relationships, the show tackles some difficult social justice issues. Here are 3 social justice issues beautifully illustrated in ‘Master of None’:

1. Immigration. In Master of None, Ansari plays Dev, a character similar to himself who pursues acting, primarily in commercials. In the show’s second episode, Parents, Dev and his friend Brian, who is Asian, discuss how different their lives would have been if their parents hadn’t sacrificed everything to immigrate to the United States in hope for a better life for them. They realize that they don’t know, and haven’t asked, many details about the immigration process. All they really know about their parents’ immigration is the same, generalized statement: that “it was hard.”

Brian and Dev decide to take both of their parents out to dinner together to thank them for being great parents, and they learn a lot about what it was like for their immigrant parents to raise children in the US--things they took for granted, like how their moms were scared to answer the phone for weeks, and how much of their parents’ lives were devoted solely to work. Dev and Brian realize that the things they get upset at their parents for, like being forced to take time out of their busy schedules to see a movie with their parents, or having to help them figure out how to work the latest technology, are trivial.

The addition of Brian and his parents in this episode adds to the complexity of immigration. No one immigration experience is the same, and although each the sets of parents had some similar struggles, their experiences were vastly different. Additionally, Brian and Dev both realize that as much as they can learn about their parents, they still grew up in contrasting cultures. A lot of what will make the parents smile is simply learning about and appreciating their dedication to giving their children a better life in the United States.

Social Justice Action: Race Forward launched the Drop the I-Word Campaign. Take a moment to watch their video and pledge to drop the I-word. 

2. Racial bias in entertainment. In Episode 4, Indians on TV, Dev runs into his friend Ravi at an audition for a small role as “unnamed cab driver,” and the two discuss how almost all of the roles they audition for seem to be stereotypical Indian roles with thick accents. Dev auditions, but doesn’t get the role because he refuses to fake an accent.

In Episode 4, Indians on TV, Dev runs into his friend Ravi at an audition for a small role as “unnamed cab driver,” and the two discuss how almost all of the roles they audition for seem to be stereotypical Indian roles with thick accents. Dev auditions, but doesn’t get the role because he refuses to fake an accent.

After the audition, Dev accidentally gets hold of an email thread where he sees the producer of the show saying that they can only cast one Indian, and the thread includes racist remarks.

This episode speaks to the lack of diversity that many shows have when it comes to race; according to a 2014 study, of the characters coded for race/ethnicity across 100 top films of 2014,

  • 73.1% were White

  • 12.5% were Black

  • 5.3% were Asian

  • 4.9% were Hispanic/Latino

  • 2.9% were Middle Eastern

  • less than 1% were American Indian/Alaskan Native or Native Hawaiian/Pacific Islander

  • 1.2% were from “other” racial and/or ethnic groupings.

This isn’t anything new if you think about it; when Indian or Asian men are portrayed on TV, they’re often there for “foreign” comic relief and aren’t much more than that. Women of color are usually portrayed as “exotic” but don’t have much dimension besides that. Master of None combats this racism in the episode. In addition to speaking out about entertainment diversity throughout the plot line, Master of None walks the talk, as they have a diverse cast: one key character, Denise, was not originally intended to be black or gay, but they rewrote the part to reflect the personality of the actress, Lena Waithe, who is black and gay herself.

Social Justice Action: Apply the Bechdel Test to shows and movies that you watch. Here are the criteria for entertainment to pass the test: 1. It has to have at least two [named] women in it… 2. Who talk to each other… 3. About something besides a man. And now try inserting race into the parameters. What do you notice?

3. Women’s Safety. In Episode 7, Ladies and Gentlemen, Dev walks home from a bar in New York City with his friend at night. “Don’t Worry Be Happy” plays in the background as they stroll down the sidewalk, and Dev steps in a pile of dog poop. In an alternate scene, an unnamed woman is also walking home at night by herself, and pre-dials 911 as she heads to her apartment. Suspenseful music accompanies the scene, and a man starts to follow her all the way to her apartment, where he bangs on her door and demands that she “give the nice guy a chance for once.”

In the next scene, the unnamed woman, a fellow actor, and Dev are at dinner. Dev tells their table about his unfortunate night in which he stepped in dog feces and ruined his “favorite sneakies.” The woman is quiet about her obviously much worse night. When Dev later learns that two women in his life have been stalked, he’s surprised. He decides that these are bad guys. But later in the episode, when a man introduces himself and shakes hands only with the men sitting at the table, choosing to ignore the two women, Dev jumps to the defense of the man, not understanding the subtle sexism that he’d just seen.

The cool part about this episode is that it portrays many aspects of sexism. Many men know that women get harassed, but cannot comprehend the sheer volume of it. Oftentimes, men also don’t pick up on every day, covert sexism; this episode illustrates a few instances of the various dimensions of women’s experiences with sexism and harassment. Women--try watching this episode with a man. You might chuckle at the truth of it. Take note on whether he’s taken aback - if he is, what kind of conversation might this spark?

Social Justice Action: End Rape on Campus is an organization dedicated to ending sexual violence against women. They have a list of actions you can take to end violence and oppression. Make an effort to do these on a regular basis.

Master of None is a stepping stone toward a more inclusive entertainment industry. As race relations and sexual assault conversations in the U.S. become more and more publicly visible, tuning into Netflix and giving this show a try is just one way you can educate yourself on some of these issues. Of course, being an ally goes much further than watching this show. Maybe it will be a catalyst for starting difficult conversations with friends, family, or partners.

And keep an eye out for season 2, which is set to come out later this year.