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Fighting for our Lives at the ACLU
by Lucy Gwin

We would have been lucky to win one convert.
Turns out, we got all but one.
Oh, they kicked and screamed.
But they got off the Right to Die bandwagon.

We tricked them into hearing a pitch about our right to stay alive, billing our presentation to a Kansas City ACLU conference as "A New Field Guide to Closet Bigotry."

They tipped to the trick right away of course, but damned if they didn't stay to hear us out and, finally, reconsider the ACLU position on Terri Schiavo.

They had supposed, I suppose, that the only disabled people who want to stay alive are dupes of the rabid-religious right wing. We thought we'd be lucky to make one convert. After ninety minutes, all 16 people in the room signed onto a resolution to "educate our constituents through forums and discussions" on the dangers to human life and human rights when Death with Dignity becomes law.

Our new converts converted 34 or so more when the full membership convened later that day. The vote for our resolution would have been unanimous, I'm told, but for one holdout who has been known to unleash her full fury when our best advocate raises the issue.

When I say "our best advocate," I refer to Kim Sternemann (disabled, ace disability rights lawyer at the Whole Person CIL in Kansas City). She's a member of the board of the K.C. ACLU. The third on our panel was the voice of reason in person, Lon Swearingen. Lon too is disabled and an active member of the K.C. ACLU affiliate - that's what the ACLU calls its chapters.

Lon and Kim barely got a word in, though, once I started the opening presentation. I'd asked the audience to interrupt when I said something they couldn't get behind. Well, they did and they did and they did until 86 of our 90 minutes were gone and we barely had time to vote on a resolution.

Since each workshop was supposed to end up with one of those, I started my spiel by offering this: "Resolved that if the Right to Die becomes law, the professionals empowered to assist in suicides shall be hangmen, not physicians."

Kim broke in with a more reasonable resolution, the first one shown here. When it came to a vote, the audience chose hers. It couldn't have gone better if we'd planned it. But this was no plan, it was good fortune - our good fortune to be among people who think and debate and then think harder. Sure, they'd scoff and they'd question and they'd argue, but none among them was willing to differ with us entirely until they'd heard us out.

I tried to raise issues they hadn't considered, primarily economic, offering real-life examples of how it plays out with health care cost containment top of mind and folks like us cheaper dead than alive. They got that one pretty quickly.

Then they had to hear that in Oregon, the only state where physicians can legally kill patients, the cost to state Medicaid for providing death is only $140 - a permanent solution to many otherwise cost-prohibitive ailments.

Harder for them to accept was the fact that the Right to Die is mis-named. Hey, I told them, you've got that right already. What's missing now, and what the Right to Die provides, is the right for physician to kill patients without criminal penalty.

Some in the group did a double-take when they heard that what their Do Not Resuscitate orders may save is a hospital, from a malpractice suit.

It was a bigger leap for them to see us as progressives disowned by our own, for instance by that well-known national socialist, Hitler. I listed other, more honored early progressives who favored euthanasia: Margaret Sanger, Oliver Wendell Holmes, the Ford and Carnegie foundations, the Harrimans, the Unitarians. Today the most diligent protector of our Right to Die is, looky here! Their own ACLU.

My alarms went off when one fellow interrupted, identifying himself as a psychiatrist. He spoke of people with suicidal intent, how docs lock them up to "save" them when they're able-bodied, but may be tempted to assist people like us. He knew his Nazi doctor history, too. He was the first to embrace our point. He was alone for a while.

It was Lon who turned the whole thing around with a story about an ACLU committeewoman. She'd asked someone to ask Lon to please not raise his hand in meetings. His arm is all buggered up and she "didn't want to have to deal with that, it turns my stomach."

Bigotry, outed. You could feel the earth pivot on its axis in the silence that followed.

They did question everything, though. "Piss on Pity?! You don't like Jerry Lewis?!? You don't want a cure !!?!!"

Lon spun the earth again with a follow-up question: "You don't accept us as we are?"

Then Kim showed some stark Tom Olin photos of Adapt actions. Suddenly the ACLU's guardians of civil rights met our warriors for civil rights. It was a shock, you could tell.

Even after the vote, I kept after one holdout, a man who'd voted for us but clearly had some reservations. Finally, he spoke. "It's my choice to plan not to live if any of those things happen and I... lose my... dignity." I asked his peers to show him, if they could, and they did, that his choice was closet bigotry. We invited him to study on "dignity" at an action, feed our activists with his fingers, empty their leg bags, lift them up when cops knocked them down. Damned if the man didn't duck his head down and crack a you-got-me smile. We got through.

What won the day for us may have been the same force that has defeated us: people's imaginings, as when they imagine a hard death. Now, suddenly, they imagined being disabled and proud but betrayed by the Right to Die.

Later, I pushed several new converts to help get us on the program at the ACLU national conference. No dice. They seem to want that job for themselves. Now they get it and we couldn't shut them up about it if we tried.

The good folks of the Kansas City ACLU converted me, too. Before I left their conference, I rejoined the organization. They've got themselves a democracy. And where there's democracy, policy can change - but only from the inside out.

Each ACLU affiliate has a biennial conference with workshops and resolutions, resolutions that go before the national conference. We might get on the bill at more of their conferences - Kim says, "Why not?!" A few friends have already signed on to try. One friend, Debby Yager, has signed on to keep track of us all. Care to join us?

Email her at or go ahead and get started. We've put our show on CD so that anybody with a computer can use it. Order it at

Together, we can do it. At least that's my hope.

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