« At the foot of the steps | Ragged Edge Home | The ECBloggerArchives Home

September 30, 2005

'We are the canary in the coal mine."

"Every day, more and more people are being denied the health care they need. . Now is certainly not the time to legalize assisted suicide, which is, of course, the cheapest way for our healthcare system to handle serious and expensive health conditions. "

If this statement from Not Dead Yet's Diane Coleman sounds like fear-mongering, there are reports and statistics to back it up. Some of that material is before the Supreme Court now.

This coming Wednesday, Oct. 5, the Court will hear oral arguments defending and opposing Oregon's Death with Dignity Act. The argument before the court will focus on the federalism question. The issue before the Supreme Court is this: is the Department of Justice's interpretation of the Federal Controlled Substances Act correct? It's a regulatory issue, Diane says.

On Wednesday we talked to Diane about the issues in the case and NDY's plan to protest at the Supreme Court on Oct. 5. But the issues, and NDY's concerns, go well beyond next week's Court date.

No matter what the Supremes decide, their ruling one way or the other will do little to quell public debate and confusion about the "right to die."

The assisted-suicide issue is going to be bigger than abortion, as the baby boom moves into its senior years -- and moves into disability along with it -- a condition most people are ill-prepared to face, because their fears have kept them from paying attention to and understanding the disability experience. They'd rather die, they say. And they may very well get their wish -- with assistance.

Few people who follow the "right to die" debate in this country have even heard of Not Dead Yet. If they have, it's a good chance they don't really understand why it and ten other national groups oppose Oregon's Death with Dignity law.

"If people really want to commit suicide, they need to be responsible for doing it themselves and not empower our healthcare system to help them with it," says Diane Coleman. That is really the simplest way of putting the issue, from Not Dead Yet's perspective.

The problem, says NDY, is not the right to suicide per se, the problem is empowering doctors to help you do it. Because you can never, no matter how clever you think you are, set up safeguards that will protect those people who others feel would be better off dead.

A number of years ago, Barry Corbet, one-time editor of New Mobility who died last year, wrote one of the best explanations of this I've ever read, and you should read it too. He shows quite clearly, I think, how simple it is for the right to die to become a duty to die, despite everyone's best intentions. And the people behind Oregon's law have good intentions. I really believe that.

But today's healthcare system is a monster and good intentions will get you only so far with monsters. No matter how white and middle-class you think you are.

Disabled people are the canaries in the coal mines. Another way of saying it is that they have had to deal with the monster, and have come away bruised and hardly breathing.

People think disabled people in general are selfish, says Diane. "That we are only wanting what's best for us. That's the whole blaming-the-victim thing our culture does. The line about disabled people is that we take your resources and suck you dry."

But no, that's not true, says Diane. The line is not distinct. We are the public. We are you.

"Disability and illness are part of the natural human experience," Diane goes on, "and we need to construct a society that doesn't dump you when you're not profitable to the bottom line of the healthcare industry, that is, when your healthcare costs exceed your premium payments.

"When you become an economic loss to the system, that's when the system would like to lose you. And assisted suicide becomes an attractive option."

"We are reaching some major decision points in our society," she adds.

Oregon today, perhaps not surprisingly, has the nation's highest rate of suicide among seniors. What might surprise the public (although it certainly doesn't surprise Not Dead Yet, whose members have been making this point for years) is that the reasons doctors list for assisting in suicides, when they're interviewed, have ittle to do with "pain."

Everybody always thought pain was the reason people wanted to kill themselves. But no. Turns out it's "loss of autonomy," "loss of dignity" and "feelings of being a burden." (Read the report.)

"I was talking to a reporter and they said they didn't know what 'loss of autonomy' meant," Diane told me.

What it means, she went on, is that you need help with things like dressing, bathing -- things that in the jargon have come to be called "activities of daily living" or ADLs.

"People have been told to think that losing the ability to dress oneself is a 'loss of autonomy,'" she said, and so that's how people think of it. But severely disabled activists don't consider needing help with dressing, or bathing, or anything else a "loss of autonomy." Their self-image isn't dependent on whether they can bathe or dress themselves, or if they need help using the bathroom. "The media still don't understand that one can be autonomous and still need assistance," said Diane. That's the kind of thing it would be good if the media, and the public, were picking up from the disability movement.

I thought about that. It was not just the media, but our entire culture that didn't understand.

This lauded "autonomy": it's such a peculiarly modern concept -- maybe post-modern. Right now I've got my nose in one of those mystery books I'm always reading -- this one a Sherlock-Holmes pastiche, actually, and last week it was a mystery set in Edwardian England. In the books, the people are always being dressed for dinner by their valets, and having their maids comb their hair ... Servants did that kind of thing for upper-class folks, as a matter of course; it was their job. Those are exactly the kinds of things that disabled people need assistants to do> Now of course, everybody has come to call them "caregivers." Which I've always felt really messed up the dynamic -- you can't be in control when the person doing your stuff is a "caregiver." The words are wrong. But call them a "valet" or "maid" and the dynamic changes.

Of course today we're not supposed to want valets and maids -- classeless society, you understand. Except where that seems to have gotten us is to the belief that if you need help with stuff you're not upper-class; you're headed for the assisted-suicide wing.

What is this all about?

We sure haven't begun to figure it out.

"Think of what we are saying to our elder population; to people with increasing impairments. Is that really the message we want to be delivering to people -- that they should be wanting the 'right to die' when they can no longer bathe or dress themselves?"

Diane is talking again. "There's a tremendous tie-in between the issues that Not Dead Yet addresses and the healthcare system crisis." She finds herself wondering if there is any way -- any way -- to get media -- or anyone -- to pay attention.

"Think about what's happened in Tennessee. People sat in at the governor's office for over 60 days protesting those deadly Medicaid cuts, and yet it never made more than a blip on the national news." I think about the protests of the civil rights era and the nightly news where I learned about firehoses and police dogs. But today's protests pack no wallop because nobody hates poor disabled people who get cut off from Medicaid. Do they?

"What is wrong with this country?" Diane asks. "People are dying -- people are being killed by this brutal annihilation which masquerades as our poverty healthcare infrastructure -- and now they are talking about pouring billions into the physical infrastructure in the wake of Katrina and Rita, and taking even more money away from Medicare and Medicaid to fund it.

"And I haven't seen a single question in the mass media about this."

What news reports say about Not Dead Yet is shaped by what Diane calls the "culture-war approach to reporting" -- "and by the desire of our opponents to fit us within that culture-war dialectic." Both sides like that "culture-war" track, she said. "But we think it's very dangerous for old, ill and disabled people."

"Because we don't fit that script -- that script of 'progressive compassionates against the Right to Lifers' -- it's hard for reporters to find a way to work our message in. Because it deviates from what they've learned to expect.

"Ten years later and I'm still hearing 'I never heard anyone say anything like that before!' from reporters."

Posted by mjohnson at September 30, 2005 01:26 PM