Monday, September 1, 2014

Of Ice Buckets and Telethons: Chapter Excerpt, Message of Love

Unless you've been completely offline for months, you've seen dozens of Ice Bucket challenge video clips; your friends, celebrities, everyone.

Some criticism arose over the waste of water, and other snarky truths, only to be countered by the point of the millions raised for ALS (Lou Gehrig's Disease), as well as awareness; and that's true, too.

But as my coverage of the original AIDS Rides proved, it's tough but needed to ask where the money's going. Sometimes, how much is being spent on a cure is questionable, if not absent.

Treatment, sure, and that keeps the pharmaceutical companies happy.

In the controversy over HIV prevention, the AIDS Healthcare Foundation has come under deserved scrutiny for dismissing Gilead's AIDS treatment pill Truvada, an HIV prevention pill, as "reckless." AIDS activists who critique testing requirements and its stance are calling for the resignation of Executive Director Michael Weinstein. 

This is a case of those most effected by a nonprofit openly critiquing its focus, and its sweeping dismissal of the way people effected by a disease have diversified their approach to it. The fact that AHS is one of the largest AIDS nonprofits makes its other campaigns like lobbying for the failed California bill mandating condom usage on porn shoots– more than questionable for many.

For other diseases and disabilities, and their multitude of money-seeking nonprofits, one can hope that the supposed recipients have a dissenting voice as well. How many disability charities advocate for things their clients disagree with?

More often these days, that's not the big problem. Your donations pay for money-grubbing bureaucracies, or at least with America's 50 Worst Charities.

"Every year, Kids Wish Network raises millions of dollars in donations in the name of dying children and their families. Every year, it spends less than 3 cents on the dollar helping kids. Most of the rest gets diverted to enrich the charity's operators and the for-profit companies Kids Wish hires to drum up donations. In the past decade alone, Kids Wish has channeled nearly $110 million donated for sick children to its corporate solicitors. An additional $4.8 million has gone to pay the charity's founder and his own consulting firms."

And what of the (shhh! It's gay) Human Rights Campign's finances? What exactly is it that makes Executive Director Chad Griffin worth $507, 000 a year?

As for Muscular Dystrophy, the sheer torture of imagining reviewing one of Jerry Lewis' epic breakdowns seems unthinkable. The talent was amazing and tawdry (I seem to recall Robert Goulet at three in the morning), and is still a popular view, as reported this week, although not the marathon broadcast of yesteryear.

But the fact is, for some big charities, most of the money goes to fundraising and "awareness," not a cure, which there isn't, still.

Back in the early 1980s, when my two novels Every Time I Think of You and its sequel, Message of Love are set, such scrutiny or even questioning of a disability telethon was unthinkable, except perhaps when questioned by the supposed disabled recipient.

So I'll let Everett tell it in his words. This being Labor Day Weekend, here are Reid, Everett, and Reid's parents, with Ev's sister Holly, at dinner on a Labor Day weekend in Greensburg, Pennsylvania:

Chapter 21
September 1981

“Ugh; Jerry’s pity-fest.”
My father nearly dropped a tray of uncooked burgers on his way out to the back yard. Everett’s comment had obviously confused him.
“Don’t care for it?” Dad asked, trying to keep things light. “Gimme a minute. I’ll turn it off.”
“That’s okay.”
“No, it’s fine. Reid, can you get the buns?”
He set the tray of meat down on the brick edge of our fireplace, shut off the television, then fiddled with the stereo, settling on one of his old Brazilian samba albums. It was hardly Labor Day-appropriate, but the melody calmed us.
“Much better,” Everett said as he gave me a concerned glance, then smirked, “Nice buns.”
We joined my mother and Holly, who were sitting at a table and chair of patio furniture on our back yard, sipping colorful drinks with a good portion of rum probably mixed in. They too raised an eyebrow as Dad and Everett continued their discussion. Everett bumped down the one step off the porch, settling his chair on the lawn.
“What is it about that telethon that upsets you, son?”
“Dad,” I said, feeling defensive.
“No, it’s okay,” Everett said, waving me to silence. “It’s just… it creates an industry of pity, not empowerment.”
“I see.”
The burgers sizzled as Dad slapped them onto the grill. I stood, unsure where to place the tray of buns. The nearby table was full of speared vegetables mom had arranged, each of them proudly plucked from her nearby back yard garden.
“Are you going to offer a lecture again, brother dear?” Holly said. She wasn’t exactly soused, but working on it. While I was glad that she had made the time to visit with my parents for the holiday, I didn’t appreciate the sibling friction she and Everett seemed to share.
Having finished her job as the costume designer for a summer theatre company in upstate New York, over appetizers and a first round of drinks –we ‘men’ had stuck with beers­– Holly had regaled us with the gossip of the various philandering theatre professionals’ not-so professional behavior.
“I’m not lecturing,” Everett said, although he did seem prepared to wait for our attention. “Sister, dear,” he added with a light tone of sarcasm. He turned to my dad, who listened, standing sideways at the grill so his back wasn’t turned. “I just think it’s a kind of pageant of condescension that doesn’t really help disabled people.”
“But they raise millions of dollars,” Mom said.
“Sure, but for what? Administrative costs for nonprofits that spend most of their budget on advertising and more fundraising. How much of it goes to research? A cure? Or even job placement, skills training? They just parade these kids out for a has-been comic to make you cry. It’s a self-perpetuating industry.”
“They are kind of pathetic,” Holly muttered. “No offense,” she hoisted her glass toward Everett.
These were the kind of almost cruel comments Holly seemed allowed to make, knowing Everett understood, and even appreciated her caustic wit. I never joked about such things with him, except when we fumbled in bed, where things often became a bit comic.
Everett offered a bemused scowl at his sister, who pretended to ignore him as she sat under the shade of the lawn furniture umbrella.

The scene continues, and other points are made, but you'll have to read the book for more.

My point is, when you make your next donation to one cause or another, as we should, ask how much goes directly to the lives of those our donations are supposed to help.

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