A Closer Look at the "ALS Challenge" Phenomenon

I have watched, and read, with familiar eyes, over the last 48 hours, as a questioning of the latest viral element of pop culture, the “ALS Challenge,” took form.  Familiar, because it was inevitable – the challenge has become so publicized, so wide-spread, that it has taken on a life of its own.  And, in our internet world, it is only a matter of time before social criticism catches up to our behavior, and those with questions – legitimate and sometime otherwise –  become comfortable expressing an alternate viewpoint.

I, too, have some concerns about this phenomenon, but mine go in different directions, as you may have seen that I did follow suit and accept the challenge myself. The following is going to be somewhat long, but it represents my continuing evolution of thought on something that has clearly become the latest cultural phenomenon.  It may also at times come across as critical of positions other than my own.

Let me make clear at the start that I respect virtually every position naturally expressed in this discussion (including, btw, the deliberate denial of some, because the reality of this disease IS horrible -- beyond what some are capable of confronting -- and the road to a possible cure still seems an enormous distance away!) -- and even more, the dear friends who have expressed these thoughtful concerns. Sadly, in our day, we are dangerously close to losing the ability to have significant public discussions and debates on important issues when there is legitimate disagreement, even more when deeply held emotional positions are involved.  And therefore, simply engaging in this discussion in a thoughtful way is important for all of us -- whether it changes a mind, or convinces someone to contribute a penny.

We DO need to do better than dumping ice water over our own, or a friend's or loved one's head, and video recording it to share with others on social media.  We DO need to do better than using a high tech chain letter to put pressure on our friends and neighbors (and, thanks to the reach of the modern technology, people we have never (and will never) met or gotten to know.

But we also needed to do better in working to find a cure for ALS BEFORE this idea went viral, and part of that is raising awareness about the disease, and its impact on its sufferers, even before it leads (directly or indirectly) to raising needed funds.

And yes, a fair amount of money that has gone to ALS this year is money that went to equally deserving causes last year, and now will not go to those other causes this year.  This is sad for those other needs, and unfortunate, and a real and unavoidable consequence of living in an open marketplace society… and let me affirm, those other causes deserve our attention, awareness and support as well!

When the maker of a consumable product captures an increased market share, either by improving their product or (more often) by a glitzy, eye-catching PR move, we call that a success story in our consumerist, capitalist society.  I am confused why it should be any different here, ESPECIALLY when the origins of the challenge were with an ALS patient, who was searching only for a way to raise awareness about his reality (and maybe some extra dollars for research!).

Yes, there is something that needs to be addressed when the needed, and too-long delayed, increase in awareness about ALS comes about specifically because the disease was connected to a catchy and attractive exercise.  The ice water challenge was, as I understand it (and I could be wrong here), hit upon as an (admittedly weak by comparison to the disease's hideous reality) effort to provide healthy folks with a small and temporary approximation of the shock to the system, and creeping loss of feeling that ALS sufferers cannot escape, as a way of tangibly raising awareness by sharing (however small an approximation of) their reality.  Because, as the campaign went viral, and the videos became ubiquitous, THAT understanding was lost in the growing cultural phenomenon!  Once again, sad, but a virtually unavoidable response to the viral success in spreading the word!

Maybe the real issues here are NOT with that honest desire and effort to raise awareness or even in our all-too-human positive response to his suffering and reality once we are forced to confront it.  Maybe it begins with the equally human tendency to remain in ostrich-like denial until a disease like this strikes close enough that we can no longer bury our collective and individual head in the sand.

But maybe it is grossly exacerbated by the toxic and malignant growth on our society's capitalist system, which has led too many of those who are fortunate enough to create that product or that market plan, capture that market share, and convert it into huge profits, to care far more about maintaining and growing those profits for themselves than they do about what good they can do by using those profits to improve the human condition for people beyond themselves and their inner circle.

Because part of the ugly truth that requires us to change here are the huge profits pocketed by many at the top of our economic food chain, while too large a percentage of the philanthropic and charitable givers in America and the world today are those with far more limited funds, requiring us who do give to necessarily triage between competing worthy causes, sometimes under supporting  or ignoring completely causes we wish we could support (even though the sheer size of the occasional gifts from the top of the earning ladder usually control the decision making process for how our smaller contributions are spent!).

Sadly, any meaningful discussion of our concerns about what is wrong with the current reality MUST deal with these economic realities, even as we seek to improve our own awareness and behaviors.  And, given the role that the internet and social media played in the explosion of this phenomenon, the discussion must go there as well.  Both of these truths make it far more difficult for us to bring meaningful and necessary change to real human behaviors and profound needs.

But we cannot allow it to stop us.  This past Shabbat, we read the words in Deuteronomy that serve as both the motivation to create the prayer we Jews call Birqat Hamazon -- the "grace after the meal" -- and its essential core.  Sadly, most translations into English have made a subtle, but incredibly significant (at least to this discussion) mistranslation of a key word, when they read: "…when you have eaten, AND BEEN SATISFIED, you shall bless the Eternal, your God, for the good earth with which you have been graced…" (Dt. 8:10)

By translating the Hebrew word "v'savata" as "satisfied," rather than the more accurate (and appropriate) "and had your fill" (that is, enough to satisfy your hunger needs), what is intended as a statement of awareness that once we have done what we have to do for our own survival (and even allowed ourselves a little bit of enjoyment in the process, hopefully), we must remember to bless the Source of our life, all too often becomes an excuse to delay even more (or ignore completely) our acknowledging of God's role in our survival and well-being!

After all, how many of us have been raised, in our highly competitive, success-driven society, to "never be satisfied," even by our own success?  As usually translated, the verse seems to allow us to hold off on praising the Eternal until we (finally) ARE satisfied!  Which may very well be a significant contributor to the unfortunate economic reality we have already acknowledged, and bewailed!

One other Jewish note -- several of my well-educated, deeply socially conscious friends have invoked Maimonides "ladder of tzedakkah” (the technical Hebrew term is best understood as far more than mere "charity," but as righteous, charitable giving from our bounty to help others).  I appreciate their doing so, as we can always stand a little more Jewish knowledge and awareness in our social consciousness.

However, most of them (however accurately) refer exclusively to the highest level of giving when they do so, and, in the process, unintentionally, imho, sacrifice one of the brilliant teachings of the medieval master to another one.

Maimonides posits 8 levels of giving, each one a little more virtuous, a little more desirable, a little more valuable to the giver, to the recipient, and to society as a whole.  The “lowest” level is described as “when donations are given grudgingly.”  Some translations also include the phrase “only after the donor is specifically requested to give.”  The “highest” level is understood as “to help sustain a person before they become impoverished by offering a substantial gift in a dignified manner, or by extending a suitable loan, or by helping them find employment or establish themselves in business so as to make it unnecessary for them to become dependent on others.”

The truth is that the fact that Maimonides chose to express this understanding in the form of a ladder is significant.  Yes, he clearly wants us to understand what the optimal form of giving should be, and encourages us to reach for that top rung of the ladder and achieve it.  However, the ladder matters, too, in this teaching.  BUT, by focusing on the highest rung only, we lose sight of the journey to that goal, which, at least for me, has always been an integral part of the lesson as well.

Some of us need to start the climb at the lowest rung – in real life with a real ladder, because we may have shorter legs, or be afraid or a little unstable standing on the ladder.  We progress slowly, cautiously, step by step.

Others, perhaps with longer legs, and more experience on ladders, might put that first step on the second rung (or even more visually obvious, in climbing DOWN the ladder, be willing to jump down to the ground from even higher!), or choose to progress by skipping steps.

Either way, the goal is the same – to reach the height we seek to reach.  Sometimes, we only have a long ladder for a short climb, and our short-term goal is a height well below the top rung.

However, when it comes to tzedakah, to helping others (to help themselves), Maimonides (and those who have been invoking him in this discussion) correctly assumes that we are all striving to reach the top rung.  It does not matter where we hop on the ladder, does not matter how fast or slow, how steady or halting our progress is.  To apply the mistranslation from Deuteronomy here, we should not be satisfied until our giving reaches, and pulls us up, to the uppermost rung.

However, and this is the key point (to me) that I fear is missing in this discussion (at least so far) – few of us are so good at giving, that we can automatically jump to the top rung!  Indeed, if we all were, the odds would be greatly enhanced that research to cure diseases like ALS would already have so profited from our much greater human generosity, that challenges like the ice-water challenge would not even be necessary!

And since we are not there yet, we must not only allow, but encourage, in every way possible, those who are not yet at the top rung, or not even on the ladder yet, to be comfortable starting or continuing the climb from wherever they are currently at, wherever they are able and comfortable.  If that means, in the short term, that we need a “gimmick” like the ice water challenge to raise awareness and willingness to contribute, to get more people onto the ladder, more people moving up it, then so be it.  AS LONG AS WE DO NOT ALLOW THE GIMMICK TO BECOME AN END UNTO ITSELF!

And making progress up the ladder DOES require us to do all that we can to make sure that our giving to this cause is an “and,” and not an “or.”  To the greatest degree of our ability to do so, our giving to this cause cannot come at the expense of giving to other causes.  To fully honor those we seek to honor by our giving to ALS research, we can not allow it to come at the expense of those other donations we make to support equally worthy causes.  Because, if we fail at this, then our efforts to elevate humanity, and to bring help and healing to others, instead becomes a hideous cousin of the “Survivor” experience – that there can only be one winner, who succeeds only by voting everyone else off the island.

I, like many of the critics of the challenge, DO prefer to do tzedakah privately… because it IS a higher level of giving.  BUT, I am also a Rabbi -- a public figure, a teacher, hopefully a role model.  I live a large part of my life in the public eye.  And therefore, even as I respect and affirm my friends’ accurate desire to keep their giving private, to aspire to higher levels, I also realize that, at least for me, there are times when going public CAN serve a bigger good.  And therefore, I CHOSE to share that I was not only taking the plunge with the ice water, but ALSO making a contribution – to encourage others, who might be tempted to see this as an either/or NOT to make that mistake – but rather, to contribute money yes, but also to contribute to the cause by raising awareness through accurately and properly passing forward the intended message.  I did not, and will not, share publicly how much I am donating to this (or any) cause – that is between me, ALSA, and God.  But, I also hope that my decision to take a step DOWN the ladder for myself allows and encourages others to take a step forward UP the ladder, and helps bridge the gap between what I CAN give to this cause, and what I wish I could!

I, like many of the critics, am concerned about the element of appearing to shame people into giving, that is inherent in a social media version of the old fashioned chain letter.  Those letters, generally consigned to the scrapheap of human experimentation, attempted to guilt people into keeping a chain alive by playing on their fears, and emphasizing, in urban legend form, the terrible things that (may or may not have actually) happened to others who made the mistake of “breaking the chain.”

I was incredibly intentional in my selection of whom to challenge.  And yes, I freely admit, one of my factors was challenging people whom I wanted to see doused in cold water!! HOWEVER, it was far from the ONLY factor.  I deliberately chose people from disparate areas of my friends list, both in time and space; deliberately chose people who I thought, for a variety of reasons, would make good “messengers” for the cause – their vocations, their locations and ability to spread the message to areas that might not yet be over-fertilized (like my newsfeed has become), their possible connections to people who have experienced the disease, their ability and willingness to give to a good cause like this, their personalities – the willingness to risk a little public embarrassment for a good cause, their desire to be part of educating the masses.

There was never an intent to shame anyone into anything – indeed, not all of those I challenged have (at least so far), posted video.  I hope (but do not know, and am fine with not knowing) that they are all making contributions of some form… but then again, I hope that of all 1400+ of my Facebook “friends” – whether I challenged them or not.  The possibility that I might be “shaming” any of them never entered my mind – perhaps it needed to, and is yet another “catch-up” we must make to living in the social media age!  But it never did.

However, the “art of the ask” – the centerpiece of successful fundraising – necessarily involves an element of putting pressure on potential donors – at least until their awareness and experience of the need or cause reaches the level when they need not be convinced to give (but still may need to be “encouraged” to give “more”).  So, I can only apologize if my actions put UNDUE pressure on any of my friends.  And question whether any such unnecessary, unwarranted, and undesired pressure outweighs the benefits of using social media to reach a far greater audience for what I consider to be a good cause.  I believe it still does, despite the blow-back discussions now underway.  I hope I am accurate in that assessment!

I thank my friends who have not walked in lockstep to follow this latest fad, for forcing me, and others, to think more clearly about my actions and my motivations, and the value of my efforts.  I especially thank them for the thoughtful ways they have chosen to do so – ways that allowed the message of greater awareness and support to still move forward!  I respect their right to question – encourage it.  I agree with the critics – the ALS challenge is an imperfect undertaking.  However, for me, by definition, it MUST be so – it is a human undertaking!  Whether it is a better effort than other similar efforts, I cannot judge, and have no need to.  I will say, however, it was effective with me, and apparently with many others.

Can we do better?  Yes, because until we are perfect, we CAN always do better next time!  And next time we will hopefully learn from this effort and do even better.  Because, when it comes to helping others, to working to eliminate pain and suffering, then the mistranslation of Deuteronomy we mentioned before really does apply – we should never be fully satisfied until ALL pain and suffering are gone from human experience!