Warning: this post does not feature any discussion or images of the house, the child, or the dog (with one exception of a passing mention of Lucy). If you are looking for those things, you might just want to skip this post.
The news has been hitting a bit close to home lately. Jim Foley, the journalist who was working to tell the world about Syria (and whose murder is now the news story), was in the MFA program at UMass Amherst at the same time that I was in the PhD program. I can't say that I knew him, but he was friends with my friends, and we were in the same orbit so to speak. I can't even process what's happened to him, a man my age, who lost his life doing work for the world, work for humanity and justice. I keep having to turn off the radio, especially when Lucy is around.
I'm also feeling a bit reluctant to engage in any news or social media right now, because it seems that the ice bucket challenge is everywhere. If you've been deprived of the Facebooks, Twitter, or all major news networks, you perhaps don't know that a lot of people are dumping buckets of ice water over their heads in order to raise money for ALS. I know I should be glad about it. But I have a really hard time watching this meme take over the internets, even when my friends are doing it, and I know that they mean well.
If you're reading this, you probably know me, and if you know me, you probably know that my father died as a result of ALS. In fact, it was ten years ago this past July that he died. My awareness of ALS could not possibly be made more aware. And I just don't know what to do with all the giddy, gleeful ice-dumping that's happening right now. I *know* that it's something that was started by someone who is personally dealing with ALS, and I can definitely imagine that among his family and friends, this activity was a way to have fun, a way to seek out and make some kind of meaning in a disease that robs a person and their family of everything. Lord knows there's a lot less fun-having happening when you're dealing with ALS.
But there's something about all the videos (and now the various incarnations including people who have stupid accidents while attempting the ice bucket, and all sorts of celebrities getting in on the game) that makes me really uncomfortable. While my Dad was sick, we were involved with the ALS Association, and they do indeed do a lot to promote research and advocate for people with ALS. It is good that they are getting more money to do this work. I am grateful to those who donate and those who are working on research and support for people with this disease. When my Dad was alive, a member of my parents' group of friends organized a team for the local version of the "Walk to Defeat ALS" in Harrisburg. I came home for that walk, and we all wore team T-shirts and walked as a group, and I suppose that was a good thing. But what I really remember about that day was that my Dad was miserable. It was a warm day, he was uncomfortable in his chair, and had to ride in the rather uncomfortable van we had acquired (at considerable cost and continual frustration) in order to provide occasional transportation for him at a point when he was pretty much constantly house-bound. Out in the world, especially at an event like this, he felt like a spectacle, like everyone was looking at him with either pity or something else he didn't want. That day at the walk, he did not want to be doing this thing that was being done for/with him. And I was torn between feeling that we had to be the dutiful family and thank everyone for putting us through this, and agreeing with my Dad that this whole thing was pretty shitty: the fact that he had this disease, the fact that this disease was definitely going to kill him, and the fact that we apparently needed to raise money to (hopefully someday) stop this disease. Surely, this was too much.
I guess what really bothers me is that we have to resort to this kind of thing -- walk-a-thons, ice buckets, whatever -- to raise money for research that will save someone's life someday. I am reminded of the fact that a few years after my Dad died, I was
visiting at home with my Mom and we went to the local CVS to pick up
some things she needed. At the checkout, the cashier asked, "would you like
to make a donation to ALS?" We were both sort of flabbergasted, as we were not used to hearing anyone talk about ALS in public, and we certainly weren't expecting a solicitation at the moment when we were paying for a prescription. My
knee jerk (cranky) reaction was to say "no thanks, we already gave at
home" because it certainly felt like we gave enough to that damn disease.
Also, the whole wording of "donate to ALS" makes me a bit crazy. Lord
knows ALS doesn't need any help doing what it does. Again, I don't want to quibble with CVS's plan to donate money to an organization that does good work. But what struck me then, and strikes me again right now is that CVS, a corporation that makes its money by selling health care supplies to people who have health care needs, was asking that we donate to deal with insufficient funding of health care. We were being asked to donate to help fund ALS research at the checkout in the very drugstore where we had regularly (and recently) purchased supplies (quite expensive supplies!) for my father's ALS: prescriptions for drugs that would not cure him, devices that were intended to help feed, bathe, or otherwise care for him, pads and tools and liquids and sundry unmentionables that become the everyday reality of life with ALS. CVS, in fact, had actually profited from my father's illness. In the moment, I tried to imagine how others would respond to this request. What if you didn't know what ALS was -- would you ask the clerk at the CVS? Would he or she explain it? What would he/she say? Why is this conversation even happening at the checkout of the CVS at all? Why can't I just buy my [insert embarrassing personal care product here] anonymously and leave? Please?
Once something like the ice bucket challenge has virtually taken over social media, it's hard to push back on it without seeming like a killjoy or just someone who's trying to be contrarian. We do get news -- good and bad -- from our social media network, and it *is* helpful (or at the very least, interesting) to see what friends (and friends of friends) are saying about the day's news. But it seems like with things like the ice bucket challenge, there's not a lot of real responding to the problem. People are "challenging" their friends to do the challenge (and their friends are then doing the challenge) but there seems to be a real disconnect about what the challenge is. For one thing, I am baffled by the fact that you are supposed to *either* dump the bucket on your head *or* make a donation to ALS research. Why set it up that way at all? I realize a lot of people are doing both, but it just doesn't make sense: if you want to raise money, why would you give people the option to do the silly/fun thing to get OUT of making the donation? I also don't see how the ice bucket raises awareness of anything other than the ice bucket. Is there some metaphorical meaning in here that I am missing? Perhaps having the bucket of ice dumped on your head gives you that jolt of being awake and somehow you.....what? Understand what is to have ALS? Because I'm pretty sure it doesn't do that. At all.
I was actually spurred to write something about my own relation to ALS and feelings about the bucket challenge after I read an article that came to me through Twitter (yes, thank you social media). I got to M. J. Dinius's article, "
On the ALS Ice Bucket Challenge and Ferguson" through a tweet from Alison. You should read it: http://avidly.lareviewofbooks.org/2014/08/21/on-the-als-ice-bucket-challenge-and-ferguson/
It's far more eloquent than I can be, and makes many more connections than I'm capable of developing right now. I think you should read it. In fact, if I were going to re-make the ice bucket challenge, I would challenge my network to read that article. And if I were going even further, I'd challenge them to do something after reading it. That something might be to donate to ALS research, or it might be to donate to students and librarians in Ferguson. Or maybe you want to help journalists like Jim Foley do their work. Or maybe you want to go read a bit more about how disability, or race, or class affects people -- real people -- in the real world and start thinking about (and working towards) fixing the inequalities in our world. ALS is only one of the problems. Scientists (with a lot of money) might actually be able to fix that one someday. But there's a lot of other kinds of thinking and working that needs to be done to fix the other problems.
I don't know how dumping a bucket of ice on anyone's head
is a way of raising awareness about anything. If you are aware of a
disease, it is likely because someone you know has or had it. Maybe
that someone you know is someone you
really know, like your
parent or your child. Maybe that someone you know is just someone
everyone "knows" like Michael J. Fox. But I wish that the fact that you
know or "know" someone with a disease didn't have to be the reason you
wanted there to be a cure for it. I would like to think that if there
was someone in front of you who needed help, you wouldn't stop to ask if
you knew that person. Maybe you could just help. And then maybe you
could get to know that person.
It is clear that the ice bucket challenge is successfully raising a lot
of money, but the giddiness, the gleeful videos, they just leave me,
well, cold.
