27 August 2014

Throwing Cold Water on Things

By now, we are probably almost as tired of the critiques of the ALS Ice Bucket Challenge as we are of the videos of people dumping ice water on their heads or the videos of people failing to do so in hilarious ways. Well, I have never shied away from going where others have already been, so I’m going to wade into the fray, head held high and dry.

As someone who has worked in charities and continues to be associated with an identifiable health cause, I’m terribly jealous of what the ALS organization that started this has managed to achieve. Not only have they succeeded in mobilizing a whole lot of people, many of them famous (more about this later), but they really managed to translate their internet phenomenon into actual donations. Watching the countless videos and the one live version I saw while waiting for a bus the other day, it is not really clear that the challengers and the challenged actually understand anything about the disease or that they are particularly attached to charitable giving. After all, the challenge is to do this OR give to the ALS cause in the next 24 hours. To go from that to tens of millions of dollars in donations over the course of the summer is phenomenal.

The critiques are as predictable as they are valid. The waste of potable water in a context in which large portions of humanity have no access to it, and even in the US there are serious water issues like drought in California and heartlessness toward the poor in Detroit. There is also no apparent link to anything relating to ALS in the action or in most of the words spoken in the videos.

I’ll add one more objection: name-dropping. I roll my eyes every time a minor star “nominates” three (sometimes more) people in that casual way that suggests they hang out on weekends. I doubt it. When that happens, the whole exercise becomes something more about promoting one’s own brand than actually helping with support and research.

The HIV/AIDS movement has challenges in fundraising, especially at the grassroots level, and especially since things got better on the treatment front. Oh, there are some big headline events that raise significant amounts of money, but the big stars seem to have moved on to other issues, some not even stooping to acknowledge the cause when they win major awards for depicting stories from our bad old days, right, Matthew McConaughey?

Our challenge now is to try not to undo our work with our fundraising messages (and to not undermine our prevention messages as we work to make a place in society for people living with HIV). No more death messages, no pity messages…we try to do actions that raise awareness of HIV and familiarize people in order to reduce stigma, but these have not proven to be very lucrative.

Maybe it’s because the organization I work for now is actually not a charity (non-profit, but we kept away from charitable status to avoid restrictions on our advocacy activities), but I prefer to spend time and effort encouraging people to get a better understanding of the realities of HIV today. How is and — more importantly — isn’t HIV transmitted? What might HIV stigma feel like from the receiving end? What can I do to prevent transmission of HIV and what can I do to help improve the quality of life of people living in my community with HIV?

So, ALS, you won this summer’s internet and you managed to translate that into cash for your cause, too. But very few people who have been literally or figuratively swamped by your challenge have any better understanding of the realities of your disease. And let me tell you that living with HIV today, with all of the advanced treatments that have made our physical health better, can still be like getting a bucket of cold water dumped on you when you run headlong into the stigma and discrimination that many in our society reserve for us.

With a nod to people living with ALS (hey — do they call themselves PALS?), here is the ice bucket challenge of someone living with the disease, and then the video of an astute Australian newsreader who has some pertinent advice for us all.