Tuesday, August 19, 2014

your position is pivotal

For the past week and a half, I've been trying to figure out why the ALS ice bucket challenge is bothering me. Initially, I thought it annoyed me because it was one of those typical online activism deals that lull people into thinking they're doing something when they're really not. But that's not the case- the challenge asks people to donate and raises awareness and has significantly increased research funding for ALS.

And we live in very exciting times for ALS and other neurologic conditions. It's a field in its germinal phase, with so much to be discovered, so there is very real hope that with proper funding and devotion of research efforts, there could be better treatments to these very debilitating conditions.

So raising funding and awareness for ALS should not upset me.

Yet it has been upsetting me. All of this week and last, it has been upsetting me. Then I recollected something.

This was in the late 90s, and I was working on the east coast, and I had this coworker MM who was Serbian. At that time, I'll be quite honest, I didn't even know that. I thought I was a real hotshot for knowing she was Yugoslavian. So it was coming on the weekend, and somehow I was always the person trying to goad us bridge & tunnel crowds into Manhattan to do something, and that weekend was no exception. Friday night, we were young, I sent out an email to a bunch of my friends and coworkers asking them to go out dancing. Everyone wrote back except for MM.

Finally, the day before we were going to go out, I'll never forget, MM wrote back a short, but positively scathing reply, and I'm paraphrasing here, but she wrote something very close to the effect of 'how can you expect me to go out dancing when NATO is bombing my home town?'

I still remember this very short, very sharp email to this day because I recall that I felt sucker punched by it when I received it. At first, I felt certain I was the victim. I was just trying to get some friends together. I wasn't in charge of those bombs being dropped. Not like they asked for my vote. Not like I would have voted for it if they had. My, she was sensitive, it seemed. And given that there was nothing any of us could do, what would be the harm in going out and having a good time?

Well. Wasn't I an idiot in my youth?

There was nothing wrong with sending out an email to go out dancing, or wanting to go out dancing, even in the context of bad things happening elsewhere. If we all froze every time something bad happened in this world, something truly horrifying even, we really would mostly be homebound and petrified.

But, there was also nothing wrong with MM's outburst. In fact, it was a 100% justified reaction, and it was borne of anxiety and heartbreak and horror. And her outburst was an opportunity. To understand. To reflect. To learn. Not that she was supposed to be the great Serbian educator, spreading her knowledge of the situation there to all her little disciples. In fact, MM and I never talked about it except that I wrote back a short apology, which she accepted just as briefly, and never did we speak of it again.

It was my job to figure out why the whole situation was so upsetting to her, my job to get it. From her vantage point, it was so obvious that even questions about it revealed my ignorance and unmasked her frustration further.

I know it's quite a leap to make. But for me, when I see those ice bucket challenges on Facebook, I want to write back to all of them with a similar terse rage-filled reply of "how can you ask me to throw an ice bucket over my head and raise awareness for ALS when an entire subset of our population is being mistreated systematically?!?" And I sort of don't feel like explaining myself any further. I suspect my rage pales in comparison to that of others. But it's the job, our job, to acknowledge that rage, to get to its roots. Ignored, it just grows exponentially.


Here are some statistics. Something to mull over.

- The reported incidence of new diagnoses of ALS yearly is 5,600 in the USA.
- It is the cause of death in ~2 of every 100,000 deaths in the US
- Who predominantly develops ALS? White men.
- In New York, just New York, in 2013, thanks to stop-and-frisk and other major problems with the alleged protect-and-serve police force, New Yorkers were stopped by police 191,558 times.
- Of those, 88% of them were totally innocent.
- Of the total, 104,958 were black. 20,877 were white.
- According to census data, in 2011, the death rate for non-Hispanic white men from ages 25-34 was 147.5 per 100,000. For black men ages 25-34, the death rate was 212 per 100,000. I repeat: 147.5 vs 212. Make that non-Hispanic black men and that rate goes up even further to 226.7
- By the way, you know how ALS is the cause of death in ~2 of every 100,000 deaths in the US. Guess what causes ~10 of every 100,000 deaths in the US? Injury by firearms.
- A baby less than a month old - 3.45 white babies of every 100,000 die. 7.45 black babies of the same amount die.

So you know. You tell me what needs more awareness. You know... it's not a zero sum game, sure, but then again, it kind of is. That's how things work. That's how our current media environment and our current social environment works. The most popular, the most sensational thing, it bubbles to the top and everything else fades. It's not wrong- to raise awareness for ALS, to engage others in the same attempt.  You're entitled to your celebrations about the money you've raised. But so am I entitled to my rage about the tradeoff, about the things that are ignored in preference.

But I really just wonder. There are plaguing questions that irk. Like mainly-- why isn't every single person who is raising awareness for ALS raising awareness for the inequities that are simply unacceptable in this country, in these allegedly modern days?

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