I have to admit, when I first became aware of this thing via Tumblr, my reaction was not a positive one. I tend to be pretty skeptical when it comes to things that are strictly to “raise awareness” (as opposed to full fundraisers) mainly because – what good does it actually do the people suffering from it?
Now I admit that some of that skepticism towards the “raising awareness” stuff has developed under the influence of my close family members who are cancer survivors/patients – and I include the word patient here, because as I’m reminded routinely by them, once you HAVE cancer, you always have cancer – even when it’s not active.
But anyway – their attitude towards this kind of stuff, at least when it comes to their diseases, has always been one of skepticism bordering on annoyance. Because in reality, what does this kind of stuff DO? What practical purpose does running a 5k, wearing a rubber bracelet, or buying a pink notebook really serve?
My grandmother on my mother’s side is a two time breast cancer survivor, and she just doesn’t get it. When she was actively battling, the last thing she needed was for someone to run a 5k while wearing pink. She needed support – emotional and practical. Someone to hold her hand through her doctor’s appointments. Someone to show up with some prepared meals to take some of the burden off. Someone to help her around the house when her energy was down after a round of radiation. Someone to go grocery shopping for her while she was recovering from her mastectomy and my grandfather was busy tending to her. Someone to be there for not only her, but also for my grandfather and my mom, aunt, and uncle when watching their wife and mother literally fight for her life became too much.
And now that she’s been in remission for more than 10 years, she still doesn’t get it. She sees the immense amount of pink this, pink that, pink everything, and all she can say is that it’s the easy way out for people. It’s easy to buy a pink mug. It’s not easy to go volunteer directly for a cancer patient or center. And ultimately, particularly for these behemoth organizations like Susan G. Komen, very very little of the money generated from those sales actually goes back to cancer research or relief. Most of it goes to salaries or manufacturing more pink stuff (or at least last time I saw the numbers – which was admittedly a couple of years ago).
Now, all this said, I am not writing any of this to disparage those that do find value and support in that kind of thing. I’m just putting it out there, and letting you know where I’m coming from – because my attitudes have very much been shaped by this through the years. And after my experience over the last year as an adult who had to take on the role of a caregiver along with the rest of my immediate family (I was only about 7 and 14 when my grandmother fought – I was spared that role then because of my youth), I have to say I’m with my grandmother on this one more than ever.
But of course through all this I recognize that not everyone shares these opinions. Some find things like that immensely helpful and supportive. Everyone has their own experiences and backgrounds that shape the way they feel about these kind of things… and I get that and respect your opinion. More than ever now. And I certainly can’t make any sort of claim that all these efforts aren’t well meaning – and intention does matter. So as impractical as I feel some of these things are, I certainly cannot ignore that end of things – it is, at it’s core, people wanting to do good. And that certainly counts for something.
Now, here’s the part where I get to the ice bucket challenge thing.
As this phenomenon spread and proliferated – as I watched it move from people I don’t know on Tumblr to people I actually know on Facebook – I found myself very conflicted. Everything I believed about this stuff told me I should think this is pointless.
But I didn’t.
Because here’s the thing. My opinion on this stuff was all formulated around cancer awareness, where behemoths like Susan G. Komen dominate, and where simple awareness has been achieved long ago. Where as far as I’m concerned, there’s far more practical good to be done now that goes so far beyond just making people aware. Knit shawls or hats for chemo patients, crochet amigarumi stuffed animals for children who are battling, volunteer at a cancer center, have a fundraiser for a specific family, donate to a specific cancer fund, family, or support center… etc… etc…
But with ALS – it’s different. It’s an entirely different story. It’s a much rarer disease. One that I’d bet most people were only vaguely aware of because, “Oh, isn’t that what Stephen Hawking has?” And so as this spread, I had to admit to myself that a tremendous amount of good could come from this.
But still I told myself that ultimately it won’t. I used the “donate $100 OR dump the bucket” part as my justification – this is just people’s way of avoiding having to actually donate or get involved. Everyone’s doing the challenge because nobody actually wants to donate. See, people do suck. Dumping ice over your head sort of sucks – but it’s easy, and cheap. So that’s the route I was sure people would take – and that route alone.
But again, as it spread, I just couldn’t hold on to the cynicism. Humanity has proved me wrong. Because tremendous amounts of people ARE donating. They’re donating AND doing the challenge. Donations to the ALSA have nearly QUADRUPLED in amount from last year.
And that’s a pretty amazing thing.
Now, like Jenn from With Luck Blog (who is the one who challenged me to tackle this topic), I do have some reservations about it.
First, it is, after all, an internet fad. And internet fads fade. And so I very much hope that even as the ice bucket challenge dies out, that the donations won’t. I really do hope that a good chunk of the people who donated for the first time as a result of this challenge don’t stop.
My other issue is that the sweeping popularity of this may very much be draining some funds and attention away from other charities, because as the article Jenn linked to in her post points out, people’s donating power is limited. And so my hope is that there are a lot of first time donations coming out of this – not just to the ALSA, but to causes in general. But I suppose we won’t really ever know.
So anyway, my muddled feelings aside, I’ve been challenged to do it. And I’ve decided I’m not actually going to participate – but for reasons I’m surprised to admit. It’s not because I don’t think it’ll do anything. Because as this has grown in popularity I’ve been forced to admit that that’s simply not true in this instance.
I’m not participating mainly because the temperature dropped significantly here in NEPA and classes start soon. Honestly I just can’t risk getting sick. But I will be donating as soon as I start receiving paychecks again.
My challenge, however, to the blogosphere is: let’s talk about this thing. I challenge all who read this to write their own post either addressing the Ice Bucket Challenge, or talking about your favorite charity. And of course, if you can, donate!