When I was a sophomore in college, my university hosted the AIDS quilt during the first week of December. Back then, in 1993, we were still crawling out of the culturally conservative 80s, and the quilt display felt like a radical event. I didn't personally know anyone who was sick with AIDS, much less died from it. And I was still a little immortal. Seeing the quilt made AIDS real to me, gave the disease names and ages and--in some cases--even a face.
In the years that followed, both in LA and back in New Jersey, I met people who later died of the disease, one of them just this past year; still, in his last days, he was more isolated than you'd expect (though people from our fellowship occasionally visited him and brought him food), and his obituary mentioned only that he'd died after a "long illness." Which might as well have been cancer, except you'd probably say cancer, but we stumble over the word AIDS, because there is still so much judgment attached to it: how did this person contract it, why weren't they protecting themselves, were they an IV drug user, etc. etc.
Now, AIDS is about Africa, it's like the "We Are The World" all-star appeal to end hunger, it's an app fundraiser, or something to make you feel good about buying your coffee. It's not that I don't support these philanthropic efforts; without them, we wouldn't be able to make the kind of progress we've been making over the past decade. Now, here at least, people don't die from AIDS, because they live with it, instead. And that's a significant improvement.
But part of me is still uncomfortable about what I'd call thoughtless philanthropy--like the ALS ice bucket challenge. Do our intentions matter? Or is the giving enough? Maybe I apply the same litmus test to this kind of giving as I apply to giving gifts at Christmas. For me, the thought matters more than the gift, but a thoughtless gift makes me feel worse than no gift at all. Am I a gift snob?
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Giving Tuesday started through a partnership between the technology site Mashable and the 92nd Street Y. And knowing what I know about peer influence, that's the way forward in philanthropy: figuring out how to get the message out using the social media tools available to us. But I hope it doesn't happen at the expense of remembering the human beings, the people who are memorialized in the AIDS quilt, or the people who are actually living with ALS. Because I don't want giving to be an easy way to dispense with our real responsibility.
Do you participate in Giving Tuesday? Do you feel like intentions are important in giving, or is it more important just to make sure that our philanthropic priorities are met?
I have similar thoughts.
ReplyDeleteGrey use to work down the hall from an HIV research facility. Before he left, he noted that this beautiful lab space was basically empty due to lack of funding. It is hard for me to see the ribbons and quilts as I don't know if any of that money actually goes to funding the research. Similar to what I see with that ALS bucket challenge.
I think people WANT to help. They want to do something. But often we go to what is easiest. Yes, awareness is important. There are people in this country who are living with AIDS and HIV is still an issue. But most don't know about the vaccine trials or how to support the research. Most assume that it's above their heads and they can't have an impact on that level. So maybe it's time we have a shift in the conversation.
Really interesting set of questions.
ReplyDeleteI also remember AIDS quilts when I was in college and then at my first job. They made an impact.
I don't participate in giving tuesday, or cyber monday, or black friday for that matter... but I am grateful for the reminder when I open up my twitter feed that there are places I can donate that I don't regularly think of. And I'll do that on another day soon :)
There's something about the imperative of giving holiday gifts or doing such and such on a specific date that I rebel against. And yeah, I'm with you, I'd rather NOT have a gift (or give a gift) if it's not really something that matters (and of course I don't mean that in terms of $$).