Lets Keep it Real: The ALS Bucket Challenge is an Embarrassment
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I can’t drink the Kool-Aid and get on the ALS Bucket Challenge train when all I really want to do is dump ice on my soul to cool the rage.
Yesterday, I scrolled through my Instagram feed and instead of the usual IG fare of selfies, food, weekend scenery, art, and fashion, I spied a plethora of videos in which people dumped ice water on their heads to raise money for ALS. Now if you don’t know about the ice water bucket challenge, it has gripped social media like crazy, garnering popularity and 15.6 million in donations in less than a month, all in the name of ALS research and awareness. Celebrities have really taken to this challenge, with powerhouses like LeBron James, Oprah, and even Joseline Hernandez and Stevie J participating.
This is a nice effort. But to be completely honest – it is a rare disease. One-to-two out of 100,000 people develop it. Likely, you don’t know anyone who has it. And frankly, I am confused and disappointed in the public’s fervent upsweep, reflected in donated dollars, of a comparatively needless health campaign. When there is a current health emergency – the 2014 Ebola outbreak – and folks are dealing with more urgent and relevant issues at hand, why has this challenge gotten so popular in the past few weeks?
I don’t have a problem with funding for ALS (amyotrophic lateral sclerosis), popularly known as Lou Gehrigs’s disease. It is terrible and more research should be done to eradicate it and increase the quality of life for those who have it. However, it ain’t going nowhere. It’s not about to bring the United States down to its proverbial knees. Even more, rates are higher in Caucasian populations striking mostly middle-aged men. So statistically speaking, it is a rare old white man’s disease.
All the while, we have some urgent states of domestic and global affairs. People are talking about Ferguson, and the multiple victims of police brutality: Michael Brown, Ferguson, Eric Garner, John Crawford III, Ezell Ford, and Donte Parker. People are talking about Israel and Palestine, as Israel continues to pummel Gaza. People are talking about mental illness and suicide, at the news of my childhood favorite, Robin Williams. Earlier this summer, people were talking about the epic child refugee crisis at the U.S – Mexico border. Despite the fact that the news is heavy on the heart, we are having some critical conversations.
People are talking about the long-standing deep structural issues that give rise to big stories, which are often the tips of the iceberg. To illustrate, scholar Merlin Chowkwanyun frames the Ferguson protests within the history of civil protests in the 1960s in reaction to American’s explicit racial exclusion policies and practices. Ferguson, and other incidents of civil unrests in major cities, is not only about Michael Brown’s murder at the hands of police, it reflects the frustrations of those without access to hear their voice heard. “A riot is the language of the unheard,” said Dr. Martin Luther King, Jr. Others have pointed out the gross militarization of the police and the disparity media’s representation of Black victims and white suspects.
People are engaged. They are talking and mobilizing. Some people may say talk is cheap, but dialogue is essential to organizing and a precursor to dramatic change. No social change happens without a critical mass voice – when lots of people get together to say, “FUCK IT. Not anymore.” Collective voice, collective action, collective compassion, and collective consciousness are revolutionary. But when the mind is distracted, it is not engaged.
What is even more bothersome of the upsweep of this campaign is what it reflects. Ferguson was put on the map by social media. Now social media is inundated with people throwing ice water on themselves in name of a disease that really isn’t a priority anyway you slice it. ALS is safe and apolitical – essentially due to its randomness and whiteness – unlike other social challenges that are systematic and based in social stratification. People can participate in this fun feel-good challenge without getting too serious, politically, and socially charged. Meanwhile, several West African countries are in a state of emergency due to the inadequacy of their health infrastructure to handle an epidemic, while water is a scarcity in many of those countries and here at home. Goodness, what about all of the celebrities who claim California as their home but dump clean ice water on their heads in the middle of a drought?
In the global village, we look like fools. And it is embarrassing.
What the fuck is wrong with us?
This country is a big immature child who refuses to expand its emotional capacity to process pain, injustice, and trauma. Privileged folks have a nasty habit denying injustices and distracting themselves from serious issues, mainly because they can. And as a privileged country, we do the same. We refuse to keep it all the way real and instead just sweep shit under the rug, which only perpetuates our inner pathology. We don’t do the emotional work. We reach for the shiny new toy to self-soothe our tantrums. We cover it up, deny it, and dust our hands, all the while saying, “Everything is fine! Ferguson, what? I just donated money to ALS!”
And the privileged few among us are especially guilty. No wonder the participation in the ALS Bucket Challenge is highly racialized and classed.
It’s time to fucking grow up, America, and cut the bullshit.
This is what’s real. The United States has one of the most embarrassing maternal death rates among other developed nations – 18.5 women die per 100,000 births and the rates are rising. Meanwhile, 4,347 non-Hispanic Black men are incarcerated per 100,000 US residents. While celebrities and social media whores dump ice water in an effort to raise now15 million dollars for ALS, these issues are simply unaddressed. In keeping in all-the-way-public-health real, a disease like ALS is a non-motherfucking factor. So I urge you to think about what it is that has made this campaign a 15 million dollar factor and how we can keep this country on track with the right conversations at the right time.
Yesterday, I scrolled through my Instagram feed and instead of the usual IG fare of selfies, food, weekend scenery, art, and fashion, I spied a plethora of videos in which people dumped ice water on their heads to raise money for ALS. Now if you don’t know about the ice water bucket challenge, it has gripped social media like crazy, garnering popularity and 15.6 million in donations in less than a month, all in the name of ALS research and awareness. Celebrities have really taken to this challenge, with powerhouses like LeBron James, Oprah, and even Joseline Hernandez and Stevie J participating.
This is a nice effort. But to be completely honest – it is a rare disease. One-to-two out of 100,000 people develop it. Likely, you don’t know anyone who has it. And frankly, I am confused and disappointed in the public’s fervent upsweep, reflected in donated dollars, of a comparatively needless health campaign. When there is a current health emergency – the 2014 Ebola outbreak – and folks are dealing with more urgent and relevant issues at hand, why has this challenge gotten so popular in the past few weeks?
I don’t have a problem with funding for ALS (amyotrophic lateral sclerosis), popularly known as Lou Gehrigs’s disease. It is terrible and more research should be done to eradicate it and increase the quality of life for those who have it. However, it ain’t going nowhere. It’s not about to bring the United States down to its proverbial knees. Even more, rates are higher in Caucasian populations striking mostly middle-aged men. So statistically speaking, it is a rare old white man’s disease.
All the while, we have some urgent states of domestic and global affairs. People are talking about Ferguson, and the multiple victims of police brutality: Michael Brown, Ferguson, Eric Garner, John Crawford III, Ezell Ford, and Donte Parker. People are talking about Israel and Palestine, as Israel continues to pummel Gaza. People are talking about mental illness and suicide, at the news of my childhood favorite, Robin Williams. Earlier this summer, people were talking about the epic child refugee crisis at the U.S – Mexico border. Despite the fact that the news is heavy on the heart, we are having some critical conversations.
People are talking about the long-standing deep structural issues that give rise to big stories, which are often the tips of the iceberg. To illustrate, scholar Merlin Chowkwanyun frames the Ferguson protests within the history of civil protests in the 1960s in reaction to American’s explicit racial exclusion policies and practices. Ferguson, and other incidents of civil unrests in major cities, is not only about Michael Brown’s murder at the hands of police, it reflects the frustrations of those without access to hear their voice heard. “A riot is the language of the unheard,” said Dr. Martin Luther King, Jr. Others have pointed out the gross militarization of the police and the disparity media’s representation of Black victims and white suspects.People are engaged. They are talking and mobilizing. Some people may say talk is cheap, but dialogue is essential to organizing and a precursor to dramatic change. No social change happens without a critical mass voice – when lots of people get together to say, “FUCK IT. Not anymore.” Collective voice, collective action, collective compassion, and collective consciousness are revolutionary. But when the mind is distracted, it is not engaged.
What is even more bothersome of the upsweep of this campaign is what it reflects. Ferguson was put on the map by social media. Now social media is inundated with people throwing ice water on themselves in name of a disease that really isn’t a priority anyway you slice it. ALS is safe and apolitical – essentially due to its randomness and whiteness – unlike other social challenges that are systematic and based in social stratification. People can participate in this fun feel-good challenge without getting too serious, politically, and socially charged. Meanwhile, several West African countries are in a state of emergency due to the inadequacy of their health infrastructure to handle an epidemic, while water is a scarcity in many of those countries and here at home. Goodness, what about all of the celebrities who claim California as their home but dump clean ice water on their heads in the middle of a drought?
In the global village, we look like fools. And it is embarrassing.
What the fuck is wrong with us?
This country is a big immature child who refuses to expand its emotional capacity to process pain, injustice, and trauma. Privileged folks have a nasty habit denying injustices and distracting themselves from serious issues, mainly because they can. And as a privileged country, we do the same. We refuse to keep it all the way real and instead just sweep shit under the rug, which only perpetuates our inner pathology. We don’t do the emotional work. We reach for the shiny new toy to self-soothe our tantrums. We cover it up, deny it, and dust our hands, all the while saying, “Everything is fine! Ferguson, what? I just donated money to ALS!”
And the privileged few among us are especially guilty. No wonder the participation in the ALS Bucket Challenge is highly racialized and classed.
It’s time to fucking grow up, America, and cut the bullshit.
This is what’s real. The United States has one of the most embarrassing maternal death rates among other developed nations – 18.5 women die per 100,000 births and the rates are rising. Meanwhile, 4,347 non-Hispanic Black men are incarcerated per 100,000 US residents. While celebrities and social media whores dump ice water in an effort to raise now15 million dollars for ALS, these issues are simply unaddressed. In keeping in all-the-way-public-health real, a disease like ALS is a non-motherfucking factor. So I urge you to think about what it is that has made this campaign a 15 million dollar factor and how we can keep this country on track with the right conversations at the right time.
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KJ
08/22/2014 at 4:22 pm
Your voice very much matters and your opinion is shared by many. As a black woman in my late 20’s who never met her grandmother who passed away from ALS my heart weapt, however. Maybe I would have met her if people deemed her life “a mutherfucking factor.” I do. Her life matters to me. As do all lives that are taken.
Nikke
08/23/2014 at 5:58 pm
Amen! I’m a BLACK woman and my aunt suffered & died terribly as a result of ALS. Maybe SHE also, was a “non MF factor” as you so ignorantly put it. What a heartless article!
This guy
08/23/2014 at 9:38 pm
Your a racist idiot!
Nancy
08/25/2014 at 2:57 pm
Thanks KJ for sharing! I lost my father to ALS. It broke me heart to see him wither away with this horrible disease. I’m glad that ALS is getting it’s share of publicity and people are more aware.
Jason
08/25/2014 at 5:45 pm
While I disagree with the offensive tone of the article, the author has a point. In terms of international health priorities and social issues ALS (luckily) impacts few people. Specifically, during 2013 0.3% of deaths in the US were attributed to ALS. Additionally, as a cause ALS already attracts much more funding than many other causes of death (for example ALS received $3,382 in research funds per death in 2013, vs $90 per death for heart disease).
Further, the ALS Foundation itself isn’t run very efficiently. In 2013 they spent 19% of their funds on salaries for their directors and putting on fundraising events. When I was nominated for the challenge I took it as an opportunity to explore the different charities out there (www.charitynavigator.com) and chose to donate to a food pantry that spends 99.6% of its contributions on direct aid to impoverished families in the Midwest and victims of disaster internationally. I encourage others to explore the different charities out there and support one that appeals to them.
Cristina
08/27/2014 at 12:30 pm
But what IS the author’s point exactly? That the money should go elsewhere? Who’s to say that people aren’t donating to ALS AND to something else? This is where I’m confused. I live in St. Louis, and I both donated to ALSA AND attending a rally in Ferguson supporting the community there. I also attend lectures on Gaza. Why can’t we have the capacity to support many causes? I suppose it’s the “viral” nature of the challenge that the author is irritated at, that some other issue should get more attention, but it’s not really a great point to me.
jon
08/27/2014 at 10:14 am
Glad i didn’t have to read too deep to see how fucking ignorant this author is.
RanDomino
08/30/2014 at 11:37 am
You’re being selfish. You think your grandmother’s life is more important than that of ten strangers?
Kate Doyle
08/23/2014 at 2:50 pm
You spelled “Gehrig’s” wrong.
Jennifer E
08/23/2014 at 5:31 pm
I felt the same way you did, until I saw this. So I hope you watch it and some of your “rage” dissipates. https://www.youtube.com/watch?v=cK7UUYt_vRI
Nancy
08/25/2014 at 3:00 pm
I was crying 2 minutes into this video. Imagine the guy losing his grandmother from ALS and now caring for his mother dying with it. It’s like watching a preview of his own death. Tragic!
Jenny
08/23/2014 at 9:19 pm
My Aunt died of ALS. She wasn’t white. She wasn’t male. She was middle aged, I suppose. Just. She seemed young to me.
Basically – screw you. I can actually focus on two issues at once. And her death was horrible and prolonged.
BarBQ
08/23/2014 at 3:58 pm
The real elephant in the room is that ebola, Gaza, and police brutality don’t effect nearly as many white Americans as ALS. If white men were being killed by police or at the same rate (even half that rate) as black men, there would be more than ice bucket challenges displayed. If white American families or even just one white American family was killed in Gaza, there would be talk of sanctions and conflict with Israel. If ebola was threatening predominantly white US cities, everything else in the US would stop. The same concept applies to kidnapped children of color, hundreds can go missing or be killed and non poc people will never know; it will not make the news, but a white American child’s kidnapping is a media frenzy.
Instead of saying these watered down phrases of my heart is big enough for more than one cause, tell the truth, “I’m not every trying to be racist, but my culture has made it almost impossible for me to empathize with people of color. I see them not as victims, but as part of the problem. Their problems cannot be a priority to me. ”
Because honestly as serious as ALS is, if all these other issues were impacting white Americans as much as they impact other groups- people would not be dumping ice buckets over their heads.
PollyK
08/25/2014 at 7:04 pm
Really? Every day, people do ridiculous things on the Internet for basically no reason at all. I would bet that half of the people who did the ice bucket challenge would have done it if it were simply a dare based on nothing – just for fun. If you’re so full of rage for another cause, start a campaign. No one is stopping you. Don’t begrudge a cause that is important to someone else just because they came up with a strategy that worked and you didn’t.
kymmiethewriter
08/23/2014 at 4:28 pm
Many thoughts…many. But…I am going to break them down by number so I don’t sound like I am rambling.
Before I begin…I want to say that I don’t think that Lou Gehrig’s isn’t important. It is. I imagine it is very difficult to live with. I work in the medical industry (primarily diabetes) and I sympathize…I really do. But, regarding the ice bucket challenge…
1. I believe that the initial thought itself is nice. To grow “awareness” about a neurological disease that most probably wouldn’t know a lick about by challenging them to throw ice cold water on themselves is a great marketing tactic.
2. I think that the most disappointing part of it all is…people are doing this and have very little idea of what the disease even is. I am not going to lie…I had to research it myself. But…I took the time to do that and others don’t. That says that a lot of folks will do things -simply- because others are doing it. That includes being “outraged” about police brutality, wrongful convictions, global catastrophes, wars, the banter behind sexual identity hatred, and e.t.c.
3. It makes me hate social media. It exposes the fact that our generation seems to know everything about nothing. Meaning, you can log into facebook or instagram and learn that something happened, be outraged by it, but have NO IDEA what the backstory is behind it. No one has to read anymore, no one researches…they just develop opinions based on what others post. That’s sad to me.
This article embodies EXACTLY what I think every time I see “OMG, Oprah did the bucket challenge!!!! ” I think…”You know nothing about ALS, probably know NO ONE affected by the disease, yet you can dedicate your time to be enthralled by people posting stuff online and their chance to raise over 1 million dollars in its name, but can’t hope for and demand the same attention for the things that DO AFFECT US ALL…which is how we are policed…in our policed states. Or, how we aren’t really paying attention to the high number of murders happening both BY our youth and TO our youth…
They can give two shits, about anything…but entertainment. And that is what it all is, entertainment.
WOW…Sorry, I try to be a little *less* opinionated in my old age but I got a new laptop and my fingers are on fire! HA
Nancy
08/25/2014 at 3:10 pm
Thanks Kym. Well written. Although I haven’t done the challenge myself (but probably still will), thank my friends that have and have posted on FB. I thank them for honoring the memory of my father that died of ALS several years ago. It is a horrible disease and I’m glad the public has a better awareness of it!
Nicole
08/26/2014 at 6:08 am
Marketing at its best! However, I do believe that if the author would have left the profanity out, it would have been less offensive. The idea is to get people to hear your message, not get offended, and to open their minds and think. The ALS challenge was creative and it worked so all we have to do is to come up with other creative ways to get other big issues dealt with. Thanks to social media and this sort of challenge, we may be able to come up with ways to raise money for Diabetes, AIDS, Cancer, homelessness and jobs.
Richard
08/27/2014 at 6:24 am
Your point #2 is the best reason for the ALS Ice Bucket Challenge. It got people to start thinking about and researching what ALS is, and what it can do to a person and a family.
cheryle
09/03/2014 at 9:14 am
Wow, how arrogant. “I took the time to do that (research ALS) and others don’t.” Kind of a sweeping statement, don’t you think? I’m white, old (67), and had a friend – white, old, female – die of this disease several years ago. It’s heartbreaking to watch, and must be excruciating to experience.
I haven’t dumped ice on myself, but I guarantee you that I can care about more than one thing at a time. I care about Juvenile Diabetes research, I care about post-polio syndrome, I care about Ferguson, I care that the GOP is taking this country down, I care about young people dying in war, and I care about journalists being beheaded. Some of these things I can do something about; others, not so much. I”m sorry that there are people who see this as an either/or issue – hmmm, if I dump ice on my head I won’t have time to worry about black youth being shot by police – but I don’t think most of us work that way.
And, you know, with all the deep issues we have going on, why begrudge people some fun along the way – while they’re doing a good thing.
Jose
09/29/2014 at 11:07 pm
The author of this article is a complete moron. Calling ALS a “white man’s disease”. My father died of ALS 3 years ago and he was a 50 year old hispanic man, 47 at the time of his diagnosis. I was 15 years old when he past away and It affected our entire family. ALS doesn’t only affect old white people, it can affect any ethnicity. Yes it’s more common among Caucasian men but that doesn’t mean only Caucasians can get ALS. I’m sure if you had ALS you would want more research being done. That comment you made about ALS being a “white man’s disease” was very racist.
JJZ
08/23/2014 at 4:46 pm
You need to seriously check your fucking privilege. I’m not sure if you’ve ever considered yourself an ally of those who fight against an ableist society, but this is one of the most blatantly ableist things I’ve read in a long, long time. Your attempts to marginalize ALS as a “white man’s disease” are insulting, transparent and inaccurate. Incidence of ALS generally fall into two categories: familial (runs in the family) and sporadic (no explanation, it just…happens.) And do you know who it affects? Black, white, Latino, Asian, young, old, male, female, transgender, gay, straight, bisexual, asexual and so on.
Is there a higher incidence among white populations? In this country, yes, but not much disproportionately based on the demographics, either. But it also has a higher incidence among soldiers and athletes, two groups in this country that are highly represented by people of color.
But really–do you honestly want to determine what’s a “motherfucking factor” in this country based on incidence per 100,000? Is that how you want conversations to go? “Oh, an unarmed kid was murdered by police? Well how many kids per 100,000 get murdered by police…let’s talk about pool safety instead.”
In the U.S. alone, 15 people are diagnosed with ALS a day. Do their lives not matter? 30,000 are within a few years of slowly suffering to their death by one of the cruelest diseases humanity has ever seen. Lives cut short through a slow, painful and torturous fashion. Are their lives not a motherfucking factor?
I agree with a lot of what you said about Ferguson, and the conversation about race and oppression this country needs to have. You acknowledge that we can discuss and advocate for more than one issue at a time, correct? So why can’t we talk about police brutality, depression, suicide, war in Gaza and ALS research? Why do you have to take your annoyance with a positive trend and decide to make the disabled the “other” here who aren’t worthy of your time or attention?
You can take issue with dumping a bucket of water out instead of just donating to help those who need the money, but I doubt that person who can’t afford an apparatus to hold their head up gives a fuck. How many social media trends have honestly helped the lives of people who need help? This one has, and this is the one you choose to shit on. Because people living with a disability aren’t worth your time, your money or space on your precious Facebook feed.
I think your on point with some of the things you have to say, but I have to seriously question the judgement of someone whose able-bodied privilege make them so blind to the world that they can’t even hide their disdain for people who are dying from ALS.
A “white man’s disease.” You spit in the face of everyone with the disease, including my friend–a Latina woman–who died from it. Go fuck yourself.
Amy
08/24/2014 at 5:10 pm
JJZ – I love what you wrote. I was going to comment myself on the appalling article. But you said everything I wanted to say. I’m not even sure that the author of this article – Jorie Ella – deserves a response. The immaturity and small-mindedness and lack of empathy he displays is truly disheartening.
As with every single thing in life, there will always be something better and worse, someone faring better and someone faring worse, money spent in a ridiculous way and money spent in a valuable way. We could say that movies shouldn’t be made because of the billions of dollars spent to make movies – when they could be poured into Africa to help with their water supply!
It’s not an either or matter. It’s not an us or them problem. We should be caring about all of these disastrous things Ella discusses in his article. And we should also be talking about ALS and how to help people who are suffering from an absolutely terrifying disease. I can guarantee that if Ella was the person with ALS, he would not have written this article.
Put yourself in another person’s shoes and walk a mile. Or a few feet. To show such contempt and disdain for money raised to help people with such a frightening diagnosis and sure death displays the lack of intelligence, kindness, balance, and humanity that Ella believes he is fighting for in his article. Ella, you are the immature child you mention. Grow up. And when you do, grow a heart too.
billsmith
08/25/2014 at 3:37 pm
Ableist? Privledge?
You’re joking right?
You need to check YOUR privledge at the door. As a blind man typing on an assisted computer, your clearly “sight-biased” post infuriates me. Go spout your bigoted, pretentious, constant-outrage nonsense elsewhere.
BillSmith Fuck Yourself
08/25/2014 at 11:29 pm
Hey BillSmith, go fuck yourself.
bjack
08/30/2014 at 2:31 am
ALS is not a priority in the black community so why are all these neutral do nothing black stars and athletes pouring buckets of ice water on there heads to raise millions of $$$ so big pharma come out with a new drug to make billions of $$$$.
Person
08/23/2014 at 4:56 pm
This “article” is what’s embarrassing. Yikes…
dawn
08/23/2014 at 5:16 pm
I am appalled at this article. Honestly I couldn’t even get through the first few paragraphs. How dare you bring race into this. I’m black (not that it matters) I don’t know anyone personally with ALS and I won’t be doing the Ice Bucket Challenge. I have donated because it is important but I donate to a lot of causes. There is nothing wrong with having fun, or creating hope or showing that you care especially when it’s something that may not affect you. I wish everyone would support people fighting for racial equality, stopping homelessness, the lack of care for the mentally ill. But it’s up to the individual. What kind of world do you live in where you can condemn charity of any kind. That’s the very same mind set we are fighting against.
Bosoye
08/23/2014 at 7:58 pm
ummmmmm…..
The person who started the ALS challenge felt it was important to them to raise money for research towards the disease. Yes there are other important health care issues, but no one’s attention is diverted from them. Someone took the initiative to raise money for ALS and I don’t think it’s right to bash their efforts. If this ice bucket challenge started as an EBOLA ice bucket challenge, people would do the same to raise money for it. It’s not about the disease, or lack of people’s attention towards it, but it is about the individual deciding to take the initiative to start the fundraising.
For that amount of money to be raised in such a short period of time is amazing. Far from an embarrassment.
Mahalia
08/23/2014 at 9:38 pm
Brilliant article re perspective & proportionality, but not sure where you got your stats re race & ALS. It is very rare overall, but while there’s good evidence from Cuban demographic study that black folks with it live longer, black & brown Cubans get it & black americans do too.”Caucasians have the highest incidence of amyotrophic lateral sclerosis (ALS), according to data presented at the 66th Annual Meeting of the American Academy of Neurology. The incidence of ALS is 1.80 per 100,000 person years among Caucasians, 0.80 among African Americans, 0.76 among Asians, and 0.58 among Hispanics. These data are consistent with previously published reports, said Lindsay Rechtman, MPH….The mean duration of time from symptom onset to diagnosis was 16.8 months. The shortest mean time, 15.6 months, occurred
among African Americans. The longest mean time, 20.4 months, occurred among Asians. The median time
from symptom onset to diagnosis was 11 months for Caucasians, African Americans, and non-Hispanics. Hispanics and Asians had a median time from symptom onset to diagnosis of 12 months.” It’s been taught that very few cases have a genetic component, so environmental factors could be in play, as turned out to be with asthma. IMO most white people doing the challenge couldn’t tell ALS from Huntington’s disease and have never known anyone who had it except Stephen Hawkings, because it’s so rare and so rare for people with it to live more than a few years with the loss of speech, ability to eat, gesture, etc. Unlike MS, there are no remissions;it just gets worse & the person can do less & less. I worked with adapting /trying to get funds for communication systems for a few hospitalized people with ALS. They were brown, from Mexico.
Tanya
08/25/2014 at 6:06 pm
Stephen Hawking doesn’t have ALS, he has a disease that’s similar to it. If he had ALS he would have died decades ago. And I don’t think that it’s just white people that wouldn’t be able to tell the difference between the three either…
Rebecca
08/26/2014 at 8:25 am
Stephen Hawking does have ALS. There are several variants of ALS… but it is still ALS. His is a slow progressive variant. While most people will pass from the motor neurons of swallowing and respiration failing, there are different kinds of motor neurons, and not everyone is effected in the exact same way. Basically, it can first effect Upper Motor Neurons, Lower Motor Neurons, or both in tandem. That makes a big difference in how long it takes the disease to progress. Just like other diseases, it will be slightly different from person to person.
Dean
09/08/2014 at 11:01 pm
Exactly what the author meant, much you know about nothing. Race and Stats you asked? Here’s a link http://www.alsa.org/about-als/who-gets-als.html. Hope your short attention span can last through 3 sentences. ALS is horrible but, we have more pressing issues at hand especially for blacks.
tupac amaru
08/24/2014 at 1:24 am
Ms. Ella,
Why so much hate? WHAT THE FUCK ARE YOU DOING? instead of hatred, help those who are struggling
CC
08/24/2014 at 3:45 am
Ignorant and sophomoric!! I lost my grandfather to ALS- his life mattered more than anyone else you so lovingly mentioned.
RanDomino
08/30/2014 at 11:41 am
How much more? If I gave you a button that would kill ten strangers to bring him back, would you push it? What if it cost a thousand strangers? Or even just one?
Pat
08/24/2014 at 5:55 am
Where can I go to donate to stop people from looting in Ferguson?
RanDomino
08/30/2014 at 11:42 am
https://secure.piryx.com/donate/mS25KFCe/MORE/mikebrown
Gra Sea
08/24/2014 at 7:16 am
As an AS woman who lost an aunt to ALS I have to say that this hurt. I’m not arguing that this could be used as a distraction,I’m just saying that we can focus on more than one thing. We can get angry and mobilize for more than one thing. ALS isn’t a diease. It’s a death sentence, and a disgustingly painful one at that. My aunt was young and Black – not old and white.
My son is young and Black. I can fight for him and in remembrance of her.
Much love to you!
Grant
08/24/2014 at 8:49 am
By saying that Ebola is going to “bring America to it’s knees” than ALS is ignorant of several facts: 1.) ALS is more fatal than Ebola. 2.) More people have ALS than Ebola… By these two facts alone, ALS is more of a “muthafuckin factor” in the US and the rest of the world than Ebola is.
You could’ve written your entire post about Ferguson, without mentioning ALS or the ice bucket challenge, but instead you decided, for whatever reason, to take down an inherent good of research donation.
Nancy
08/25/2014 at 3:17 pm
Thanks for speaking for a lot of us!
Nicole
08/26/2014 at 6:00 am
LOL- Ebola… What about AIDs and Cancer?
alana
08/24/2014 at 12:11 pm
“People are talking about Israel and Palestine, as Israel continues to pummel Gaza” Wtf? Nice antisemitic stance asshole
George
08/26/2014 at 5:40 am
How is that antisemitic? She said Israel, not Jews.
Shielding C
08/26/2014 at 12:21 pm
The Israeli military isn’t the representative body of Jewish people everywhere. You get that, don’t you?
J
08/24/2014 at 1:08 pm
Wow, you actually implied to people with ALS their lives don’t matter. And apparently we are all incapable of handing more than one issue at a time but not this oh-so-enlightened author. I’d ask ‘what the fuck is wrong’ with you.
There are valid points in this, but they’re buried in the absolutely disgusting way those with ALS are disregarded and the author’s elitism regarding the general public.
On a public health ‘keeping it real’ level, ALS research is incredibly useful in Parkinson’s and Alzheimer’s research AND the plight of ALS sufferers is a great showcase for the problems with healthcare in this country, particularly the reach and control of big pharmaceutical companies.
JH
08/25/2014 at 9:45 am
Agreed J. I think the author got it all the way wrong here. Participating in one fundraiser or challenge doesn’t mean you don’t care about anything else going on. That’s ludicrous. And statements like this “So statistically speaking, it is a rare old white man’s disease.” are part of the problem in getting anyone to care about any illness that they believe doesn’t affect them. How would it look if a mainstream media outlet, or some random blogger, wrote something to the effect of “So, statistically speaking, ebola is a rare, poor African’s disease.” or “So, statistically speaking, sickle cell disease is a rare, poor black kid’s disease.”? I seriously doubt the author would rally around such a thing. For the record, I am black and my husband has SCD. I don’t know anyone with ALS, I don’t get the ice bucket challenge, but it’s huge news because it worked! It’s a case study in engaging people through nontraditional media in an issue that, as the author seems to think, most people wouldn’t know about or care about. I find this article incredibly, well, naive and a little silly.
Jackie
08/24/2014 at 3:18 pm
I think this article has some great main points. People are flocking to the ice bucket challenge and they feel comfortable doing so bc they see it as apolitical and they believe they are doing a good deed. You raise strong points about our decision to donate so much to ALS a disease that doesn’t disproportionately affect historically oppressed groups over the Ebola crisis. Despite the article’s strong points there are several places that lack both tact and sensitivity for the families and people the live with ALS. I understand your rage. Hell I have some of it myself but to dismiss the struggles of people with this disease is uncouth. We must fight for black life because black life matters, but so do the lives of people with disabilities. On twitter you said you didn’t mean to insult, but there is nothing more insulting than being told your life doesn’t matter or that because there are so many other tragedies, yours is a non factor. We should be enraged that people across the country are wasting water and giving themselves a pat on the back and then turning their back on w Africa and ferguson. Like I said you made some great points and you have every right to be enraged and surely don’t need me to tell you that but I can see how hurtful this article may be to some
Nicole
08/26/2014 at 6:01 am
I think the article would have had more meaning if it was reworded and without the cursing.
Jonathan Rivera
08/24/2014 at 3:49 pm
While, I will agree that there may be more relevant issues that The country is tackling. ALS is one of the many orphan diseases that have far less funding that the major killers of mankind. The Ice Bucket challenging is bringing this disease and diseases like it to light. It takes small social movements like this to spur an conscious movement. Your cynicism is detrimental to social progression my friend. Take this time to reflect on that.
Cam
08/24/2014 at 7:20 pm
There have been a lot more campaigns and dollars raised for hiv/aids than for ALS, and that certainly is by-and-large “non-factor” for the demographic you apparently resent. Do you really think this challenge has taken away time that ppl would otherwise spend chatting about global affairs? The challenge is an opportunity for people to be creative, have fun, and do their little part for someone else.. And when undermine the humanity in that, you promote the same brutal inability to relate to individuals as that cop in Ferguson.
Mimmie
08/24/2014 at 11:36 pm
Oh, where to begin on this one. Ebola has killed 1,300 people. Nevertheless, it is a crisis and should take priority, but let’s not kid ourselves: the average person knows more about Ebola than ALS. Now, malaria kills over 1 million people a year, overwhelmingly children under 5. Did you know that? Not many people do — and that’s an outrage. I know that. Bill Gates sure as hell does. He took the ice-bucket challenge, and just to be sure, I double checked that his priorities with his foundation (have you heard of it?) are still infectious diseases like malaria and maternal health. Get your facts straight. You need a cold bucket of reality in your face. You are way too angry. And, right now, so am I. The ice-bucket challenge is a fun, engaging campaign that took off like wild-fire. Good on ALS. Now go fund malaria prevention and instead of writing such a stupid, hateful rant.
Deidre Harris
08/25/2014 at 7:01 am
I would suggest if all of the things you mentioned above are more important to you than the funding of ALS research.. and the thought of someone coming up with a smart and successful fundraising campaign to raise awareness and money for a little known but killer of a disease embarrasses you….maybe you should put your time, money and energy towards creating a positive fundraising event for one of those more “important” causes instead of bashing the success of this one. What this ALS campaign has taught me is that Americans can be giving and will rally together for a cause…take that information and run with it. Do something positive with your soap box and stop being disrespectful to the thousands of people who have died from and are suffering from this disease.
Stansen
08/25/2014 at 7:40 am
You are a disgusting “human being”.
Karyl
08/25/2014 at 9:09 am
OK, sorry, but this pisses me off. How on earth can someone coming up with a simple idea that goes viral and raises money for an otherwise ignored disease be a bad thing? More over, how the hell does this good thing get piggy backed onto everything else that’s bad in the world? When I sold wheelchair vans I had the good fortune to meet some amazing people that had the misfortune of having this ugly, nasty, “non-motherfucking factor” disease. The author of this article is right about one thing “ALS aint going nowhere” without private funds being raised because there is no profit in researching or developing a cure. How sad he seems to think that makes it a “needless healthcare campaign”. Don’t watch the videos, don’t make a donation, but do come up with a simple idea that goes viral and helps Ferguson, and Ebola, and the thirsty people in 3rd world countries or anything else this whinny ass, do nothing but bitch, instigating author mentions just because he saw those issues raise emotions in mainstream media. I will be posting my video tonight and have already made a donation.
Nicole
08/26/2014 at 6:02 am
Marketing at its best! I love social media.
V
08/25/2014 at 2:34 pm
I actually had a long conversation about police brutality with my blonde haired middle class friend at work. We almost exclusively talk about cat videos and other Facebook related items and our families. Never do we talk about politics, social justice, or religion. We had this conversation about Police Brutality, because we first started talking about the ice bucket challenge. The conversation quickly turned from Facebook items to items of greater importance (including Ferguson, Ebola, and income inequality).
Shielding C
08/26/2014 at 12:27 pm
*Like* *Like* *Like*
Sierra
08/25/2014 at 2:49 pm
I see ignorance on the internet everyday but this is beyond being ignorant. Just because the disease isn’t very common does not mean we should not make it a huge factor. The Ebola virus is also not very common!!!!! So what’s your point? I’ve donated as well as dump the ice over my head! I feel great about my decision. Maybe you should expand your mind a little more than what you’re claiming. Because in my opinion you sound racist, retarded and ridiculous
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Josh
08/25/2014 at 5:51 pm
Dear Jorie Ella. I was just reading the blurp about you at the end of your nice article. I think you have a typo in need of repair. “I’m a writer and think way too much about pop culture and life through a sociological lenses. And I like wine.”
Since you use the plural form of lens, you either need to drop the article “a” or change “lenses” to its singular form.
Bill
08/26/2014 at 8:22 pm
Well written and well said but that doesnt stop people from doing something fun and donating…at first I thought it was pointless with no reason but I was proven wrong with the amount raised and it is addressing a need while people have fun..I agree there are more pressing issues and we need to address them. This country is in dire need of a Superman..a leader who is intelligent and a non conformist to the system that greed has created..we all need to stand up and be that Superman, combines together for whats right and just…but the Ice Bucket challenge has nothing to do with this and is a fun event for people to donate some cash to help…peace
pmw
08/27/2014 at 4:56 pm
You lost me after you said “ain’t”… Are you like 15 year old High School student?
Quiche
08/27/2014 at 7:43 pm
Wow…no words..just no words how wrong all of this is.
Benhameen
08/28/2014 at 8:21 am
He lost me when he said you probably don’t know anyone with it. My father has ALS and while I fully understand people raging over the loss of water im tired of people acting like this is any more of a distraction than anything else that distracts us daily. At least they raised over 40 million dollars for a horrible disease.
Nick
09/02/2014 at 11:12 am
8% of that goes to actual research just you know.
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Chris
08/28/2014 at 10:02 pm
Ohi guess the Bill and Melinda gates foundation which has raised billions of dollars for AIDs researcher. Which is mainly a disease that is in the Sub Saharan African region is dumb too since its a middle age white man donating to a disease which is mostly transmitted through black people in Africa you racist bitch.
Jeff
08/29/2014 at 7:01 am
This author should stick to arguing that we should be paying attention to donating to lots of good causes.
ALS still hasn’t raised as much as several elite athletes’ personal contracts. The US consumer spends lots of money. This kind of money get spent in malls and shopping across America all the time. Maybe the author should write about that kind of spending, instead of vitriolic ranting against ALS donations.
My uncle (who is white since it seems to be a factor for this author) is dieing in an excruciating way. It is a disease that takes away all human function until it usually ends in respiratory failure. In summary, as the ALS disease progresses muscles atrophy to the point you can’t eat or speak, let alone lift a hand or foot, finger or toe.
So if you donated to ALS, don’t feel bad about it. Maybe just don’t take the ALS money donation money out of other worthwhile causes part of the budget.
Matt
08/29/2014 at 11:01 am
This is the most ignorant fucking I have ever wrote. I hope you get hit by a car you fucking piece of shit.
Jackie
08/29/2014 at 1:02 pm
I don’t understand why people need to ruin a good thing because it’s not a perfect thing. The challenge was never meant to solve all the world’s problems, just to raise money and awareness. Mission accomplished! But writing something you KNOW is going to hurt people, criticizing those who are trying to participate in something that is for a good cause (misguided or not), and assuming everyone who supports one cause can’t possibly also support others…. I’m not sure the READERS of this post are the ones who need to “grow up.”
D'Arcy Cooper
08/31/2014 at 4:19 am
For those who are black and are saying their relative was black and had it. 93% of patients in the database are Caucasian! 60% are men. Yes, it is a disease that affects mainly white people, 33% more men than women. 100 million dollars is more than 1% of many African countries GDP, 10% of Somalia even. We could have given every Somalian a 10% raise in their income. It also represents 3000$ per person with ALS in America. Can we not solve other problems rather than some rare disease that affects mainly white men?
Stop pretending you care BTW. Humans are always going on about compassion and whatnot. You’re destroying the earth for gadgets and travel. You only think you care but reality is: You’re all assholes. Just as bad as this writer. Own up to it!
m a cummings
09/01/2014 at 6:40 am
Hard truth here D’Arcy
steph
08/31/2014 at 6:05 pm
Facts are facts.
Nick
09/02/2014 at 11:07 am
When will you people finally understand. This “ASL Ice Bucket Challenge” that so many people are doing is a distraction. Notice how when this Ferguson shooting happened so did this huge viral challenge. The government wants to stay in control. This challenge was talked about more than double that of the Ferguson story. To me the Ferguson story is more important than a disease that has been around a long time. And just so you all know 8% of your money that you donate to ASl goes to research. Only 8 fucking percent.
Nick
09/02/2014 at 11:10 am
ALS*
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