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September 28, 2005

At the foot of the steps

This time next week, if all goes right, crips from across the country will be lined up across the front of the Supreme Court with signs, chanting "We're Not Dead Yet!" It first happened in January,1997, when the court took on assisted suicide -- the "right to die," its supporters call it.

This year, Not Dead Yet plans to be there again. The case is Gonzales v. Oregon, and the newly-constituted Court, with John Roberts leading it, will hear oral arguments in the case on Oct. 5.

The Scripps-Howard news story describes the case thus:

A right-to-die case confronts the court Oct. 5, when it hears the Bush administration's bid to prosecute doctors who participate in physician-assisted suicide allowed by Oregon's first-in-the-nation "death with dignity" law.

Then-Attorney General John Ashcroft issued a 2001 directive aimed at gutting Oregon's law and put doctors on notice that physician-assisted suicide violates the federal Controlled Substances Act on grounds that suicide is not a "legitimate medical purpose."

Lower courts sided with terminally ill Oregonians and medical professionals who challenged the directive, holding that Ashcroft overstepped his authority, ignored Congress' intent in enacting the controlled-substance law and intruded on traditional state regulation of medical practice.

We caught up with NDY head Diane Coleman yesterday and worried a bit with her about whether the turnout this time would be -- well -- skimpy. It's a realistic worry.

First off, because of former Chief Justice William Rehnquist's death, there was a time when nobody knew if the Court was going to stick to its schedule at all -- whether the first-Monday-in-October opening would be delayed, if they'd hold off on hearing the more controversial and high profile cases. Then when the word came down that the Oct. 5 date was going to stick, it left just a few weeks to get folks in gear. And that's not a lot of time for disability movement folks, as we know.

In 1997 hundreds turned out. It was the first year of NDY's official existence. The Supreme Court case (there were two, which were always listed in tandem: Vacco v. Quill and Washington v. Glucksberg) was one of the reasons NDY formed, and as with any newly formed enterprise, energy was high. "Kevorkian was still at large then, too -- and that year he'd assisted in I don't know how many suicides of people who had non-terminal disabilities," said Diane. "He was so popular then -- and people in the movement felt we needed to draw the line and it was very pressing that we do so.

"Plus we had incredible help in organizing from Mouth magazine and from Evan Kemp and Associates." (Evan died in August, 1997, months after the case had been heard in February ). NDY also had a logistics person, which they no longer have.

Not Dead Yet today faces the very thing so many disability groups face -- the thing that weakens (I almost want to use the word "cripples" here ) nearly all of them that are actually down in the grassroots fighting for rights. You know what it is. No money. No resources. No real way to get money.

The disability rights movement has never had the big bucks from well-heeled supporters that other movements seem to attract. The money in disability stuff almost exclusively comes from government grants and programs. The private money is poured into groups that seek cure or who don't rock the boat too much.

Not Dead Yet is one of those groups who wants to nearly overturn the boat, so it's not surprising they don't get funding. They had some from the Campaign for Human Development for awhile, but that was seed money, and nobody else jumped in to make the seeds grow. It's the story of the disability rights movement.

I could wander off into a riff about lack of funding for rights, but I think I'll try to stick to the important story here which is about what's at stake next week -- as NDY sees it -- and why people need to get their butts over to the Supreme Court steps next Wednesday.

Only I do want to take a teensy detour, because this is so significant regarding the larger problem. When Diane and I were talking, I mentioned having read something somewhere last spring -- something on the web, maybe another blog -- which purported to have "discovered" that NDY was being funded by deep-pocket right-to-lifers and that's why they protested over Terri Schiavo's death.

Of course the story wasn't true. No, they'd never gotten any such money, Diane assured me. But you know what stories like that do: they create a belief, and so it doesn't really make any difference whether they are true or not. They have done their work.

"We have never accepted a donation from a pro-life organization," said Diane.

Truth be known, NDY got very little money from anybody. There were a few individuals who kept them afloat, such as they were. No salaries like a regular job would offer, no office -- Diane working full-time as director of the Progress Center for Independent Living to make ends meet.

Most of the established grassroots crip groups have to do it this way. The leadership has other jobs, often from government money, and has to do this work in their spare time. A few groups' organizers do get benefits and can live on those, but that certainly doesn't go far. Others cobble together over the years some other streams of money like this. But nobody has much, and it shows

Now it's showing quite plainly as we are a week away from the Supreme Court steps and not much way to get folks there or to do much of anything except worry.

If you ever wonder why groups like NDY don't get a lot of press, remember this blog entry. In fact, the more I listened to Diane, the more amazed I became at the amount of attention they managed to get.

What does the lack of money mean, in terms larger than not having a logistics person who can help folks fly in from around the country to get to the Supreme Court next week? Not having someone who can call reporters and bend their ear about the issue? It means that you have to hold down a full-time job, which requires your thinking of it during the day. This means you don't contact the reporters to talk about the NDY side of the case. You can barely respond to calls from reporters that do come in. Diane had to hang up and take a reporter's call while we were talking. She called me back, but work was piling up on her desk while we talked -- work unrelated to the management of an ILC, not to the issue at stake in Gonzales v. Oregon.

And what is that issue?

The issue is about the role of the federal government in the affairs of the states -- an issue that often comes before the Court, for it is one that they like to rule on repeatedly. (In terms of disability rights, they did something like this in the Garrett case, but this one is different from that.)

In overly simplistic and non-legal language, it's about this: Can the federal government trump states' rights? And, if so, what reason is valid enough to allow this?

People are funny. They come down on different sides of the very same principle, depending on how the idea's been presented to them.

You could say -- and indeed, Not Dead Yet says this, although in better wording -- that it's like when the feds stepped into "states rights" in the civil rights era, to enforce people's rights (those of blacks) against laws that had been passed by states -- Jim Crow laws -- but which were in fact discriminatory to a minority.

Here's what is going on in this case.

Oregon passed a law called Death with Dignity. They did so twice, in fact. Their state law allows a doctor to prescribe drugs that will kill a person. Their state law says that's OK.

There's a federal law called the Controlled Substances Act. The Department of Justice (headed by Gonzales, which is why the case has his name in it) says that Oregon is breaking that law in allowing doctors to do what their state law allows them to do.

The Right to Die forces thus characterize the case as one of freedom (the right to die) against federal intervention.

A very liberal woman I interviewed recently, a scholar, someone who's worked for years in reforming the healthcare system, and who for a long time worked in AIDS education, told me her view about the case. She thought the feds should leave Oregon alone -- which, I might add, is the standard progressive response to this case.

She thought Oregon's Death with Dignity law was a good idea -- because, she said, of the process that had led to it:

You know, Oregon has that process about community town meetings about health care -- a very unusual process, which we should all think about adopting. It's very innovative. They discuss health issues through town meetings and then eventually bring the issues to their state legislature.

They have voted twice now on that law, and twice they have agreed ... and i certainly hope the Supreme Court is going to leave it alone because the process [by which they arrived at it] is so clean. It seems like a real democracy-in-action kind of process.

"One analogy -- one we should care about in the disability movement," Diane now tells me, is the analogy with the Title 2 ADA regulations and the Court's Olmstead decision.

"If the Dept. of Justice says that the ADA's Title 2 means that a state has to implement the Olmstead decision" -- that is, that it has to have a plan for letting people receiving Medicaid live in the "least restrictive environment" -- i. e., in their homes and not nursing homes -- and that its plan has to have reasonable timetables, can the state turn around and have its own state law that says otherwise? " If a state, for example, believes it best to keep people with serious disabilities in institutions -- even if the state had town meetings and everybody thought that best, and passed a law to that effect -- could -- should -- the Dept. of Justice come in and tell the state that their law violated the Americans with Disabilities Act?

This is the same kind of situation.

What Not Dead Yet -- and 10 other national disability groups which joined them -- argued in their friend-of-the-court brief filed in this case, was that this case was about discrimination.

We want the court to look at this question: is the use of "controlled substances" for the purpose of assisting a suicide a "legitimate medical purpose?" And if the federal government says it isn't, can the state say otherwise?

The disability groups say the Oregon law is inherently discriminatory. This is the crux of things. That state law "sets up a double standard, based on health status." If you are considered ill, or disabled, or "terminal," then you have a right to assisted suicide. If you're healthy, you don't. That's the double standard, and it's discriminatory, says NDY.

This is a very simple concept but it's way way off the radar screen for most folks, who simply do not understand it, or, if they do understand it, don't think it is a valid way of looking at the issue.

That double standard -- treating "ill and disabled" people differently than "healthy" folks -- is an ADA violation, plain and simple, says their brief.

"We think that is a very solid basis for a federal authority to conclude that the use of controlled substances for assisted suicide is illegal," she says again, lawyer-like words coming out of her mouth. "We thought the legal strategy used by the Dept. of Justice was not the cleverest," she adds, in an aside. "They could have gone in under the ADA -- some argue that the ADA can't be adequately applied in this, but it's obviously discrimination in setting up the two-tiered system."

It's de jure discrimination, she adds. Okay, I say.

Now she is warming to her topic:

Because a majority in a state votes to discriminate against a minority does not make it legal. Civil rights at their base are an interference with majority rule at the local level.

Yeah, that's what was going on when the feds back in the day moved George Wallace away from the schoolhouse door.

The problem, Diane concedes, is that virtually nobody outside the disability rights movement -- and even some inside it -- believes that people who are ill or disabled are an "oppressed minority."

"So they don't see that argument we make. They simply think we're interfering with their rights and freedoms to choose to have someone help them commit suicide when they become too disabled."

People seem to want to believe that NDY is "a pawn of the right to life," as it's been put to me more than once.

"Anyone who visits our website can see immediately how wrong that is," Diane points out.

Add this to the fact that those within the disability community who think NDY is not right about this one are speaking out -- and NDY by and large isn't -- and the need for folks to be in front of those steps next Wednesday takes on an added urgency.

"I sure don't know how many people will come next week. Some are coming, I know, from across the country. But what we deeply need are people within easy driving distance to make that effort to get there.

"I know people are overwhelmed with other things, but this is the opening of a new court, and as we could see even during the last few weeks, the coverage of the new court has been getting front page headlines, even despite the coverage of the hurricanes.

"The case is going to be a big story next week, whether we're there or not

"If we are there, we will be part of this story. We have a chance to deliver our side of things -- a chance we don't often get." It's always such a struggle to interest the media in our issues. But they are always interested in assisted suicide, because they see it not as a disability issue but as a public issue, she said.

"The media is going to be there. And if we can be there in enough numbers to not be ignored, then we can have an impact -- and we should not give up the chance to do that.

The groups who can drive in should help us take that day and that opportunity to deliver a message of numbers that show how much we care, that show we are a real consituency that must be reckoned with."

On Friday, I'll blog some more about the broader issues at stake for disabled people in the case.
COMMENT-AUTHOR:William Loughborough
COMMENT-BODY:The ruling in a similar case re California's attempt to "legalize" access to marijuana for medical use held that the very same controlled substance act of the Feds trumped the exception voted in and legislated by the state.


Posted by mjohnson at September 28, 2005 11:53 AM