Wanted: the Ryan White of Stem Cell Protests

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This is something that my colleagues and I have been puzzling over for the last couple of days: why didn’t the sick and the disabled march on Washington?

The question inevitably leads to a few really bad jokes, but let’s move on. Despite any inherent problems in mobilizing the population at hand, it could have been done, and maybe, were Christopher Reeves still alive, it would have been done.

But so far as I can tell, neither his foundation, nor any of the big disabled/disease groups did any real organizing in advance of the vote. Even ACT-UP was muted.

Which is a shame, since everybody knew there was vote coming and everybody knew it would likely pass and everybody knew the president would veto and everybody knew that there wouldn’t be enough votes to override the veto.

Some portion of that equation might have changed had the disabled, the sick, their friends and family (and, while we’re at it, the scientific community) filled the Mall and the Capitol steps.

So why didn’t they? I can think of a few reasons:

Funding. Disease organizations and/or non-profit foundations are afraid of losing their federal funding and/or donor support.

Fiefdoms. All these organizations compete with each other for public attention and money. They don’t have experience working together. Nor, too often, are they inclined to do so.

Lack of a point person/group. It’s not a pure party issue, the net roots community didn’t do much on this front, and with Reeves dead, there’s as yet been no one to step into his breach.

(Note to larger left: Does this sound familiar?)

There’s no doubt that the Republicans feared the notion of a huge protest—why do you think they held the override vote so quickly? Now maybe the Democratic Party is happy to have this issue for the fall elections. But it is an issue that transcends party lines and interests. If Bush is going to trot out the “snowflake babies” at every turn, I can only hope that somebody puts a real face on the millions of Americans that are hurt by impeding valid scientific inquiry. That’s the real way to “race for a cure.”

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And the truth is, going into the final 4 days of the year we still needed to raise $TK to hit our $350,000 goal and start 2021 on track. It's nerve-wracking, wondering if the big spike we normally see at the end of December is going to be another thing that doesn't go as planned in 2020, or worse, if, now that Donald Trump is set to leave the White House (for longer than a taxpayer-funded golf trip to a property he owns), folks might be pulling back from fighting for the truth and a democracy and think the hard work is done.

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