Thursday, August 21, 2014

On Being a Pariah On Facebook and the Ice-Bucket Challenge

At this point, if you don't know about the ice-bucket challenge that is circulating on social media, you are either living under the proverbial rock or you're just very, very lucky. I was "challenged" quite early on and declined to dump the water over my head, not because I'm afraid to get cold or because I'm a hater or a spoiler, but because there was something about the whole thing that got on my nerves. I wondered if it was my own ego getting in the way of having fun along with millions of other people, many of them my own friends and family, including my sons. I wondered if it was jealousy, because I've been trying to raise money and awareness for epilepsy causes for the last two decades and, most recently, for medical marijuana. I figured it might have to do with my general dislike and growing mistrust of the non-profit world, its ties to pharmaceutical companies, the vast amounts of money being exchanged with ever dwindling amounts directed toward real research and cure. I wondered if it was just my own crotchety contrariness. Maybe it was all of those things or none of them, just that weird instinctual feeling that I am hard-pressed to articulate.

In any case, I watched a few of the videos, pretended to enjoy a few more and then quit clicking. Then I read this, posted by a friend, a survivor of breast cancer and, evidently, a fellow ice-bucket challenge pariah. It's a statement by the Breast Cancer Action Group who has also admirably argued against the whole pink ribbon campaign, arguing that the vast marketing machine that these "campaigns" fuel works against research and cure.

We are approaching illness and healthcare assbackwards if we continue to determine which diseases get critical research and support dollars based on the appeal and fun factor of their fundraising campaigns! This is a mad way to confront illness and disease. In this new world of philanthropy by popularity contest, the future looks very scary. Only diseases lucky enough to be the beneficiary of a viral, “fun” campaign will capture public attention and funding. Savvy marketing, motivated self-starters, random acts of kindness will determine who gives a toss about people dying and the disease or illness they are dying from.This haphazard approach to healthcare and research funding isn’t the solution. No single life-threatening illness is more deserving than another. But all this wonderful generosity from a caring public willing to embrace the cause of the day serves as another nail in the coffin of a different kind of solution to illness, disease and ill-health—a solution that requires government funds, public money not private giving, that ensures people everywhere are able to access quality healthcare; that makes decisions about the allocation of research dollars based not on cyclical fads or randomly successful, social media campaigns but on evidence-based needs and outcomes.The #IceBucketChallenge is well-intentioned and has raised a lot of money for the ALS Association. But this disease-by-disease popularity contest approach to funding research is not a sustainable way to confront illness and disease and pushes responsibility for public health onto the private sector. This takes us in the wrong direction. We all deserve better.

Thank you, Yvonne, for turning me on to this, for helping me to figure out just why I couldn't do the "challenge" and for educating me about breast cancer and efforts to treat and cure it.

You know, some people are going to read this and think, at best, that I am a Debbie Downer and very short-sighted. At worst, they'll think I'm arrogant and just putting people down that choose to do the challenge. Even my sons gave me a hard time. But that's ok. I get it -- I get both points of view.

For the record, I made a donation to ALS, a horrific disease that has claimed the lives of several people I know and love. I sure hope they figure out how to cure it soon, and I hope we as a culture and a country can move toward more communal values -- maybe more lasting and comprehensive than filming ourselves dumping ice-water over our heads or buying pink Kitchen-Aid mixers.


  1. Amen, sister. Amen.
    Preach it.
    I feel the same damn way. And I haven't watched one of those challenges. Not one.
    (Although I will admit that the heat index here is about 108 right now and the thought of a bucket of ice water being poured over my head sounds pretty okay.)

  2. I had the same reaction! I actually posted about it yesterday. And I donated my money to pancreatic cancer research instead, because the whole thing just smacks too much of manipulation-via-social-media to me. Glad I'm not alone...

  3. I agree it's all too haphazard and unfair the way medical research is funded, but I'm sort of fascinated to discover what made this ALS campaign "stick"? Was it the college high jinks aspect of it? What did they tap into in the "group think," I wonder. It's all sort of bewildering and I'd be curious to know why this one? Why now? Maybe there'd be something usable in the answer.

  4. I have to disagree somewhat. While this is NOT the way research should be funded, I am thrilled to see ALS being discussed by people who may not have known much about it before. This disease claimed the life of my grandmother back in the 80s and very little has changed in terms of what we know about and how we treat this disease. I wish gimmicks were not necessary and I certainly see the downside but I am thrilled that it has been a conversation starter among many of my friends and co-workers.

  5. I don't know. I'm glad this one "took" and I don't care if people dump water on their heads or buy pink appliances or anything else as long as it keeps the money flowing. Yes there needs to be more government funding and its correct one disease is not more important to another, but awareness and involvement is the key. If this helps that, great. They tried something new and it worked. Good on them.

  6. I hear ya.
    I think giving quietly without fanfare is perfectly fine. Better than perfectly fine.
    I think illnesses in competition with one another is terrible. Lung cancer always loses. ( Oooh, did he/she smoke?)

  7. I read this post today on the subject:

    I agree that the public should not have to go 'begging' for funds for research and cures. I feel the same way about all those stupid school fundraisers like bake sales and Christmas wrap sales (oh, and magazines etc etc). I was always happy to donate to the school without the useless crap to purchase.

    Feel the same way about walks and runs to benefit causes...why not just give money to the cause and skip all the hoopla and money spent on organizing these fundraisers?

    At the same time, given the system we have, I think people are doing what they can and trying to help.

  8. I don't think you're being a hater, Elizabeth. I think that most of the folks doing the challenges haven't ever actually encountered someone with ALS. It's so tragic, so ugly and awful. I can't say I so much mind the trending #icebucketchallenges but to me it feels a bit dichotomous to me to dance and laugh over something so awful. Kind of like the equivalent of a #dancelikemichaeljackson challenge to raise money and awareness for. . .say. . . the American Foundation for Suicide Prevention.

    "Hey! Kimberly here and I have on my white glove and glitter socks challenging Elizabeth Aquino, Mary Moon, Mister Moon, Henry, Oliver and Angella to the Michael Jackson MOONWALK Challenge for SUiCIDE! Okay, hit the music!! Ha ha ha ha!!!"

    Uhhh, yeah. Just kind of odd-ish when you've actually been affected or have seen the disease. All of it too hypothetical, you know?

    Seems like you should have to answer four hard ass questions about ALS before you get to post the video. Or you should HAVE to also post a picture of someone with advanced ALS next to your video.

    I can't say I'm a pariah yet. . . but that's my two cents. Maybe I'm a mini-pariah. Ha ha ha.

  9. My god. I couldn't believe what I was reading. I decided a long time ago that if you weren't complaining you would have nothing to say. How you look at others who dare to complain about the struggles of ordinary life with complete disdain. How dare they complain. Only you can as you are the self proclaimed queen of the shitty life. Angry, bitter so self absorbed and somewhat narcissistic. All that being said, even my mouth dropped open on this one. You took something so sweet and innocent and funny and wonderful and you just pissed on it. It is all about you isn't it. May I remind you that Sophie is still alive. I lost a dear sweet soul to ALS. For nearly 12 yrs his wife lovingly took care of him. Most die within 4 yrs. she didn't complain or pander for money. She just loved him. His family loved him. His friends loved him. They did all the things you do for Sophie without complaint. We all loved him but he is dead and you just pissed on his memory. All of that money raised is just icing on the cake to whatever they do or don't get from the government. How could you be anything but happy. You are a miserable person but I hope one day you will wake up and realize how fortunate you are, how much more you have than most. Maybe then you can be happy for others and smile.. ..a nasty smile.

  10. "This haphazard approach to healthcare and research funding isn’t the solution. No single life-threatening illness is more deserving than another. But all this wonderful generosity from a caring public willing to embrace the cause of the day serves as another nail in the coffin of a different kind of solution to illness, disease and ill-health—a solution that requires government funds, public money not private giving, that ensures people everywhere are able to access quality healthcare; that makes decisions about the allocation of research dollars based not on cyclical fads or randomly successful, social media campaigns but on evidence-based needs and outcomes." YES. And to Anonymous...oy!!! Take it easy there dear and read the post again.

  11. Anonymous:

    Yikes. I clearly offended something in you or hit a nerve, and I imagine that there's not much I can say other than that you've succeeded in hurling the most personal insults I've had hurled at me in the fifty years I've been alive. And for the record, I posted something about the ice-bucket challenge that helped me to figure or begin to understand my own conflicted feelings about the way government and non-profit foundations interface in medicine. I didn't parse apart the argument that I quoted directly from and leave that to better minds than mine. As for being self-absorbed and a tad narcissistic, I imagine that I am, particularly as a writer. I try to be honest and tell my truth, but my entire life is not on this blog, as you can imagine. For every person from Ohio (ahem) that hurls insults at me, there have been countless others that are grateful for my big mouth, that shore me up, that I am connected to and owe deep, deep debts of gratitude. That's why I always use my name when I state my opinion.

  12. The sorry part is these campaigns don't encourage due diligence. Lots of people give to charities whose overhead is enormous compared to the money that is actually allocated to whatever cause they espouse. And even ranking sites like Charity Navigator aren't able to accurately assess how effective the work of an organization really is. For many diseases, private funding can support research that is much more risky and innovative than work NIH
    would underwrite (and as with all government agencies, there's substantial overhead there, too)
    and can sometimes advance a field
    much faster. If you really care about a cause, it's important to take a hard look at how funding is spent. There are certainly organizations worth supporting. As for FB, I mostly stay away from it, but re the present subject
    a friend forwarded me this link:

  13. My beloved brother-in-law died of ALS. It was horrible and heartbreaking. Still, Elizabeth, I agree with you. This has become NOT about ALS but about "Look at me on social media getting ice water on my head for a good cause!"
    It's absurd.
    And all that pink stuff for breast cancer awareness? I think that pink shit causes cancer.
    So that's my other two cents.

  14. Heavy duty. I don't know what my opinion is. As usual...I am a bit on the fence. But I guess I have a 'To each thine own' when it comes to charity and the like. How it is marketed and sold, how one decides to give.

    As for the gubment's role? I don't know enough about that to have an opinion. I am ashamed to admit that I don't even know what they provide or don't provide as far as funding for anything. From the Arts to scientific research.

    I've only got so much room in here. Bad excuse, but it's all I got.

  15. Elizabeth, I love you and you are a good person and please don't let any cowardly troll take one ounce of your time or energy. You are entitled to your opinion on this and anything else.

    I personally have a hard time with large organizations that raise $ and "awareness" because I've seen in the autism community how the money is raised, oh yes....tons of it, but how little goes to actually looking for a real cause. I prefer to give at a much more personal local level.

    Again, Elizabeth = good
    Trolls = bad
    Trolls = very very much hurting

    Not one fucking thing to do with you.

  16. I was challenged by a friend as well, and I declined because I AM JUST NOT GOING TO DUMP A BUCKET OF ICE ON MY HEAD. Call me crazy. I did pledge to donate some money, though.

    Like 37Paddington, I am curious about how this particular campaign managed to go viral. Funny how some things take and others don't.

    My boss died of ALS after a protracted illness (more than ten years, very long for an ALS patient). I'll donate in his memory. I get your point about the weirdness of fundraising campaigns like this, but you know, whatever works! As long as we don't lose sight of the disease and the misery it causes.

    Anonymous is entitled to his/her opinion, but why he/she would feel the need to attack you for yours is another question entirely.

  17. Ouch, at the dig on anon commenters, which if I remember right I think I've noticed on here before as well (but could be mistaken). It feels odd to have anon comments offered as an option on the blog but then to have those who utilize this option that you yourself provide dismissed for using it.

    I do also think those who use and appreciate the anon option on blog comments probably prefer and expect not to be identified in some manner by the blogger, such as posting where they're writing from. The assumption being that a blogger who offers this option does so because they intend to honor and respect the preference for anonymity some commenters may have.

    Many bloggers don't offer anonymous comments as an option at all and that allows a commenter who prefers anonymity to decide in advance whether to skip commenting there altogether if they strongly prefer anonymity or to give up anonymity and proceed anyway using use their name or established online identify.

  18. Thanks for this. I'd been defending the ice-bucket challenge when people complained about the waste of water (yes, I'm sure we're all so pure about turning off our showers to soap up?) or the weirdness of the bucket-dump being presented as a way to dodge making a donation (who cares when so much donation is happening?) But the critique about funding disease-research by popularity and shifting what should be a public responsibility into private pockets... that one resonates. THANK YOU.

    So sorry about the trolls. The urge to lash out anonymously is very close to the surface for some people.

  19. Elizabeth--all I will say is this: Even if the person who wrote those angry words truly felt that way, the fact that they said with such venom, such vitriol tells me that this had far more to do with them and their own feelings than you. Extremes of emotion are reserved for those things you care for deeply. That person doesn't know you. This means that that had to do with that person raging against something else that perhaps even they don't understand.

    I hope who ever anonymous is feels better. And I hope you know who you are. My sense is that you do. And you know what? We do, too.

  20. The anonymous comment reminds me of an email my nephew sent me, not about ALS but the same sort of anger/spewing.

    I don't have a problem with donating to charities, in fact I support donate a fair bit of money each year to charities. What I have a problem with is the public, look at me, I'm so great, method of donating. It reminds me of people who want to publicly flog their religion, look at me, I'm so good. That's why I dislike the ice bucket challenge, it's a good cause, just don't care for the "look at me" aspect of it.

  21. Elizabeth, dear,
    You are a beautiful woman, inside and out. You are a dedicated advocate for your own daughter's health and that of others. You are a devoted mother, willing to home-school your son in the midst of a demanding care-giving role and who-knows-what-else, as we all know that we don't put our entire lives on our blogs.
    You are a gifted writer and your self-expression deserves - yea, needs - to be heard. Do not let vitriolic anonymous comments - or named ones - silence you. I did that for over a year after being attacked, and it did not serve me or the greater good. Let it go to the best of your ability, and rest in the love of all of those around you, here and elsewhere. There are many more of us than there are angry "anonymouses" (or should that be "anonymice?")

    As to the ice bucket challenge, I hear you and your friend, but (as a cancer research advocate) my opinion is slightly different. I say, Do your homework about the charity; make sure that a healthy majority of their funds go exactly where you want them to go. Raise awareness and support in ways that are appropriate for you; if money is short, you can donate items for auction or give your time. There is always SOMEthing that we can do to move things forward, if we look for it. xoxo

  22. Thought I was the only one to feel like this so I have been keeping my mouth shut and ignoring the challenge! I resent the "mandatory" donation as well as the 24 hour turnaround time! I care--a LOT--but I do feel like this is treating it like the "disease of the day" and not an illness worthy of real research, time, attention, etc. This feels like gimicky PR that everyone will forget as soon as they tire of the posted videos. SO SO SO many need help, perhaps just a campaign of just giving period would be more palatable?

  23. Incredibly late to this party, but I appreciate your candor and willingness to reflect on your own thoughts regarding this issue. When I was challenged and subsequently heard how much money ALSA had raised thus far, I chose to issue my own "challenge" to folks in our community to support a local cause that is near to my heart. I was afraid at first that people would be angry that I had co-opted ALS's gimmick, but given that we were asking for minimal amounts of money to help homeless kids buy back-to-school supplies, I figured I didn't give a rat's ass. As for the personal attacks, I am so sorry. I know how awful it feels to have someone say such hateful things about you and how difficult it is to let those feelings subside without taking them personally. I can only hope that one day "Anonymous" will be as willing to look at his/her own thought processes and challenges as you are. Love you!



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