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."
--------

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.

"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?

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.

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-DATE:9/28/2005
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.

Love.
--------

"The EAC needs to hear from people with many different types of disabilities... tell them your story about voting inaccessibility using voting machines, inaccessible polling places or voting instructions." You can do it by email, to votingsystemguidelines@eac.gov -- got to be received by 5 pm E.S.T. this Friday (September 30, 2005). When you send the email, she says, please remember to include your name, address and phone number. AAPD would like a cc on your email too: aapdvote@earthlink.net.

There follows a long bit of background, including some testimony. The scary thing is that the EAC is getting this testimony because it's evaluating new standards for voting machines. "These standards are what will be used to design the next generation of voting equipment," she tells us. And... Uh oh...

[T]he proposed level of access is less than it was in the 2002 standards for people who have partial or low vision and for people who have manual dexterity and hand mobility/strength limitations.

"New access standards should always maintain or move the level of accessibility forward," she says. But the new regs don't have the word "shall" in them -- meaning the access isn't mandatory.

The Help America Vote Act, which Ms. K calls "a sweeping piece of civil rights legislation that requires that all eligible voters shall have access to the voting process without discrimination," is supposed to mean that "voter registration, absentee balloting, polling place access, adequate parking and signage, voting instructions, voting machine instructions... are accessible...."

Access is always so ... inconsequential... in the public's mind. I know, I blog about this constantly. I guess you get tired of it. But I can't help it. I found myself thinking about it again in connection with voting when I read a letter in today's New York Times commenting on their recent editorial inveighing against the proposed requirement being floated by the Commission on Federal Election Reform that voters be required to present at the polls a voter ID. That would be wrong, said The Times; bringing up civil rights. Similar editorials appeared in the Atlanta Journal-Constitution and the St. Petersburg Times.

If they're so hot to defend people's voting freedoms -- which they should be, of course -- why aren't they likewise hot to call for access to the polls for disabled people?

Why doesn't anyone hardly ever speak out for access? Why isn't that important to the public?

The Rag has run bunches of articles about voting access (here and here are just a couple) and we will no doubt run more. The story's always the same: access denied, access made incredibly difficult, and nobody seems to care. The same themes, always.

If you have a disability and you've tried to vote, you've had a problem. It's almost a given. So please, please, send that email before Friday. You've got two days. Hop to it.
--------

It will be awhile before he gets more up there, though, he tells me, as he and Henry's mother spend too much time struggling to get Henry what they "believe to be a free and appropriate education." Scott isn't too keen on what passes for "free and appropriate."

"At this very moment, Henry's school district is explaining ... why [they believe] Henry is receiving 'a free and appropriate education,' " Scott tells me.

Look at Henry's photo again, he suggests. I see a young child covered with cuts, scabs, bruises and blood.

Do I find what happened to Henry "appropriate?" Scott asks me.

Do you think Henry's resulting medical care was -- or will be -- free?

I've talked to advocacy organizations, parents and attorneys that had nothing, in my opinion, of substance to offer regarding this situation. Yes, they all mentioned similar stories and suggested different strategies for seeking resolution. ... A short segment regarding Henry's incident at school ran on a local news station as well as a brief article in a newspaper located some 60 miles or so north of Champaign where the injuries occurred.

The information came and went with hardly a notice, as expected.

As the parent of a disabled child, my experience leads me to believe the civil rights movement for disabled people has hardly begun. As extreme as it may sound, my stomach turns when I see a "handicapped" icon. It's as if the symbol screams, "Cripples served here." How very nice for them.

Imagine if it were the other way around. Imagine if these icons were removed and non-accessible facilities posted signs: "No cripples allowed." Oh, but I'm looking at it all wrong, I suppose. After all, there is a difference between bigotry and good intentions merely lacking funds, right?

Or am I simply looking at it the way disabled people always have?

Lapper is pregnant, nekkid and disabled -- you can tell that last because the statue has no arms. Just like Lapper herself.

But of course the overriding question is: Is it just there to be PC, or is it "good"? (Temple U.'s Penny Richards has a take on that you should read.) Like everybody else, judge for yourself. Also think about the politics that got it there in the first place.
COMMENT-AUTHOR:Anonymous
COMMENT-DATE:9/22/2005
COMMENT-BODY:I know the Venus de Milo was not originally designed to be without arms, but nevertheless it came to mind.

http://www.artchive.com/artchive/G/greek/venus_de_milo.jpg.html
COMMENT-AUTHOR:Anonymous
COMMENT-DATE:9/22/2005
COMMENT-BODY:This article is really disturbing...

http://www.timesonline.co.uk/article/0,,2088-1785269,00.html
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Wonkette's operatives evidently first spotted them hassling Bill Frist. The theme, which started then, was that nobody could figure out what they were protesting about, other than the fact that they were LOUD.

What I learned in Communications 101 way back when: If the people you're sending the message to don't get it, you've not done the job right. Is ADAPT trying to send its message to the public? Reporters? Bloggers? Guess it's not working.

I learned in C101 that it doesn't make any difference that you've prepared scads of press releases; no matter that you've been burning the fax machine lines; no matter you've been emailing out the wazoo. If the folks you're trying to reach don't know what the heck your message is, it's YOU who needs to take a look at what you've done wrong. Because, for sure, something has gone wrong.

I think ADAPT's goals and mission are focused exactly on the problem. I've always liked ADAPT -- I interviewed Wade Blank back in 1983 and never looked back. I was thrilled when they took on the nursing home industry. They saw the problem clearly -- ADAPT has always been excellent at cutting through the b.s. to see what the problem really is. And the problem with getting folks to be able to live in their own homes and not nursing homes is really very simple: the nursing home lobby has CMS by the short hairs and most of the money flows right into the institutions' pockets. We can talk about waivers, we can talk about MiCassa, we can talk about redirecting the money... but in the end the feds and the folks in Congress won't take it away from the nursing homes. That's the problem, and ADAPT knows it and has named it. (CMS, by the way, is the Federal Centers for Medicare/Medicaid.)

But enough of that. THAT is what the folks who hear the noisy chanting ought to be learning, too, as they hear and see the group. ADAPT's PR and organizing work should be directed at that. Too often, I fear, it isn't... and what we're getting from Wonkette is the result.

Well, they're clearly not experienced flacks, says Wonkette. Underneath all her snide coyness, she's hit on something troublesome -- and true.

Wonkette oughta be blogging about the issue, not the noisy messengers. Folks hearing the chants should be thinking, "Oh, these are the folks who are angry that our government gives all the money to nursing homes." Then that thought oughta be followed in short order by this one. "Yeah, I'm angry about that too, and I want it to change, too. I'm going to (call my elected officials) (write that story for my newspaper) (report on it for tonight's newscast) " -- you fill in the blank.

But they're not. And that's because they're not really getting the message in a way that makes them think it's important. That makes them think that Things Are Wrong And Need To Be Changed. They don't realize, I don't think, that what ADAPT is angry about is, after all, a Public Issue that affects somebody we know already, and may very well affect us in the future.

The message isn't getting out. It didn't get out when they did the Free Our People march, either -- to my mind one of the most tragic wasted media opportunities our movement has seen in a long time.

Today's Wonkette installation manages to report on ADAPT -- but seems to find that the only coverage they've gotten -- other than from her -- is on their own site. This jibes with what I was told the other day about their press conference: no one from the media showed up.

I'll be tarred and feathered for sure for this blogging I'm doing today. I have to say, though: If I didn't really want ADAPT's message to get out -- really really want that -- I'd probably not say anything. ADAPT's cause is too important -- to all of us -- to leave its coverage to Wonkette.
COMMENT-AUTHOR:William Loughborough
COMMENT-DATE:9/21/2005
COMMENT-BODY:We all suffer from the same "unnoticeability" you noted re ADAPT.

It's not so much that they "don't get it" as that they can't even get past the ugly PWD. "They" didn't hear that slaves should be free, they were slaves, after all. They didn't get it that women wanted equal rights, "we give them superior rights!". They didn't get it that gay people wanted safety/equality, after all they're just a bunch of queers.

The problem isn't with ADAPT's PR shortcomings, it's that they aren't considered human and since they (unlike everybody else on the planet) are "dependent" there couldn't possibly be any message there, no matter how it's presented.

To parpphrase McLuhan "the messenger is the message" and if it's couched in a wheelchair it can't possibly be of any importance/significance/merit.

When they get into direct contact with people like Bro. Frist they get head pats and pretend support but it's all wink/nod/nudge/ignore.

We tend to think that "they" are rational and perhaps caring and still make the mistake that if we speak slowly/clearly/rationally that they'll hear what we say. They won't.

The usual notion that because so many families have PWD in residence there might be "understanding" therein is so often proved erroneous that it's a wonder we still pretend that those close to PWD are supporters, even if they are friends.

It's not that "they" might become disabled at any moment, it's that they already are as evidenced by their arrogant stupidity/cruelty.

Like Mary Frances said "they're trying to incarcerate/murder us" and couching the message in other terms won't make it any better attended to.

Love.
COMMENT-AUTHOR:Mary Johnson
COMMENT-DATE:9/21/2005
COMMENT-BODY:You might have something here. It's as good an explanation as any.
COMMENT-AUTHOR:Anonymous
COMMENT-DATE:9/22/2005
COMMENT-BODY:You had it right the first time -- if you think you've communicated and the evidence is that you haven't, you haven't.

Blaming "them" for being dense is nothing more than the flip side of them blaming PWDs for having a disability. It's NOT just as good an explanation as any ... it's an explanation that leads nowhere.

The logical outcome of "they are just stupid, and cruel" (paraphrasing what WL wrote) is -- what? Might as well kill ourselves?

How do we establish any connection at all with people if we see them as stupid and cruel?

Why would those people care to listen to us? Once we accuse millions of people of suffering from intellectual (stupid) and moral (cruel) bankruptcy, should we be surprised if they tune us out?
COMMENT-AUTHOR:William Loughborough
COMMENT-DATE:9/26/2005
COMMENT-BODY:Bro. Anonymous sez: "...it's an explanation that leads nowhere."

Actually it leads to more taking it to the streets just as it did for Stanton/Anthony/King. For many years the aforementioned arrogance turned deaf ears and blind eyes (how's that for PC?) to the "movement de jour", be it suffrage or suffering.

My rant had to do with the notion that is widely voiced in movements that holds we must not ruffle things too much - instead we should reason softly rather than chaining our chairs to their obstacles.

There's nothing inherently "wrong" about being stupid, but there's not much wrong with pointing it out. In fact stupidity disbles them and ergo they're PWD even though not a part of the DRM! We have met the enemy and they are us.

Love.
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Why am I telling you all this, other than just trumpeting the new? Well, because... Edge-Centric, now that it's nicely established in this little spot of cyberspace, will likely be folded into this new Thang. Or maybe not. The debate has been going on for several weeks and there are pluses and minuses on both sides. But you, Dear Reader, need to be aware of the following:

1) IF we migrate, we'll warn you in advance. So try to keep reading to see.

2) IF you have a particular entry bookmarked and it disappears, fear not -- it does exist somewhere in cyberspace and our techies will no doubt know where. So email me and I can point you to it.

3) IF any of you has ever undertaken this great migration yourself, I'd like to hear about it so I know what to expect.

Thassall, folks! (as Porky P used to say) -- for now. Later I hope to post something sort of funny about ADAPT in DC. And tomorrow or Friday at the latest I have to do a nice blogroll of all the new blogs that are coming to my attention.

Wish me luck with The Migration.
COMMENT-AUTHOR:imfunnytoo
COMMENT-DATE:9/21/2005
COMMENT-BODY:Good Luck with it. I hope it turns out to be as function friendly from your end as it should.
COMMENT-AUTHOR:Katja
COMMENT-DATE:9/21/2005
COMMENT-BODY:Just want to let you know that I've used Movable Type (the content management system that Ragged Edge has switched to) on a number of websites, and I like it very much. It's very robust and it's got the potential for lots of customization.

Your existing Edge-Centric blog entries and comments can easily be imported into Movable Type.

Your web guy probably already knows about this, but with some care, you can make the blogger URLS redirect to the correct Movable Type entries, so everyone's bookmarks or links they've made to Edge-Centric entries will still work just fine. I'm happy to provide more detail if you or your web guy(s)/gal(s) would like it.
COMMENT-AUTHOR:Anonymous
COMMENT-DATE:9/21/2005
COMMENT-BODY:The transition has taken a couple months or so and because you're inside it, it acts tedious/buggy/recalcitrant from your view.

The efficiency is such that you are, after only a couple of years of doing things via modern magic, as powerful as a complete "major media" outfit!

One person can indeed make an enormous showing. As recently as five years ago you had no idea what HTML/HTTP/CSS/RSS/Blog/Wiki could possibly represent (some of them didn't even exist) and now you're knowlegeable (perhaps even authoritative) about them.

Because you persevere like the I Ching admonishes, you will further.

Keep on keeping on.

Love.
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There's been a lot of back and forth in emails and among email lists about the crip groups who are trying to have an impact, trying to find out something. Susan FitzMaurice has started the website http://www.katrinadisability.info and I'm told officials are visiting it daily to see what they can learn. I've heard of meetings and discussions, some with officials pretty high up in the feds... But you just don't see a word in the media.

There have been a lot of stories (with more I'm sure in the pipeline) about disabled peoples' fates: I've seen Katrina Displaces Thousands With HIV; I've seen Disabled evacuees languish: Advocates: Help for special-needs victims lacking from the Atlanta Journal-Constitution (a good one, but nothing about re-building with access built in). There was one in my local paper today, picked up from the AP. Somebody emailed me implying that The New Yorker had something about access in rebuilding, but I can't tell if it's what my email friend is saying or somebody writing in the New Yorker, and I haven't yet found it online (if anybody does, holler.)

The bottom line: there may be the isolated story out there somewhere that mentions this, but it's certainly not Big News.

I was appalled to open my New York Times last Saturday (Sept. 10) to find four -- count 'em: 4! -- op-ed articles by Folks With Authority (whom The Times had obviously solicited), pontificating about the rebuilding of New Orleans. Make It an Island, wrote Bruce Babbitt (who you may recall as the Sec. of the Interior in the Clinton administration). Raise the Ground, said Henry Petroski, a professor of engineering at Duke, the author of "Pushing the Limits: New Adventures in Engineering." Make it a Marsh, said Craig E. Colten, a professor of geography at Louisiana State University; Build Diversity, wrote Michael E. Crutcher, an assistant professor of geography at the University of Kentucky.

Not a word, of course, about ACCESS.

Amazing, really. What were the pictures we saw, over and over? People with one form of disability or another. What did we hear? That folks were trapped in homes. Do you wonder, as I do, why nobody publicly seems to be connecting the dots and saying "hey, these homes we're rebuilding better have an easier way for folks to get out!" Is that too much of a leap to make? Guess so.

Yours Truly fired off an email letter to the editor: "Make it wheelchair accessible!"

Of course, the letter never ran.

Scott Rains, on his blog, is asking the questions I want to know the answers to as well: Will FEMA-funded Post-Katrina Homes be Universally Designed? Visitable? he asks (and has an earlier post here. )

You can't rely on laws to get this job done. There's the Fair Housing Act, covering "multi-family" housing -- but who knows if anybody's going to follow it in the rush to re-build? And there's all this "temporary housing" going up... and it's got the inevitable STEPS. Why steps?

I was back and forth with Eleanor Smith of Concrete Change over the weekend about all this. "Inaccessible houses impede our lives," says Eleanor, who uses a wheelchair. "They keep us from entering or leaving on our own. It's totally illogical to be scrambling to retrofit existing homes for access -- and then have the government build new homes with gross barriers after the hurricane."

Three things (you probably know this list already):
-- a no-step entrance
-- wide-enough doorways (32 inches clear passage)
-- a bathroom you can get into in a wheelchair.

We're trying to hatch a plan. More here -- and elsewhere, I hope -- when it's hatched.
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BROWNBACK: .... And I want to take another point on that to tell you -- we talked a lot about the disability community, and well we should, and the protection needed for the disability community. And that's important, because I think it really helps people that need help, but it helps the rest of us to be much more human and caring.
Senator Kennedy is helping me with a bill because a number of children never get here that have disabilities. Unborn children prenatally diagnosed with Down's Syndrome and other disabilities -- I don't know if you know this, but there was a recent analysis, and 80 percent to 90 percent of children prenatally diagnosed with Down's Syndrome never get here -- never get here. They're aborted in the system.
And people just say: Look, this child's got difficulties. And we even have waiting lists in America of people, today, willing to adopt children with Down's Syndrome. And we will protect that child -- as well we should, under the Americans with Disabilities Act and other issues -- when they get here.
But so much of the time, and with our increased ability of genetic testing, they don't get here. Diagnosed in the womb, system that encourages this child to be destroyed at that stage -- and this is all in the records.
And we are the poorer for it as a society.
All the members of this body know a young man with Down's Syndrome named Jimmy. Maybe you've met him, even. He runs the elevator that takes the senators up and down on the Senate floors. His warm smile welcomes us every day. We're a better body for him.
He told me the other day -- he frequently gives me a hug in the elevator afterwards. I know he does Senator Hatch often, too, who kindly gives him ties, some of which I question the taste of, Orrin...
(LAUGHTER)
... but he kindly gives ties.
HATCH: It doesn't have to get personal...
(LAUGHTER)
BROWNBACK: And Jimmy said to me the other day after he hugged me; he said Shhh, don't tell my supervisor. They're telling me I'm hugging too many people.
(LAUGHTER)
BROWNBACK: And, yet, we're ennobled by him and what he does and how he lifts up our humanity and 80 to 90 percent of the kids in this country like Jimmy never get here.
What does that do to us? What does that say about us. And I would just ask you, Judge Roberts, to consider -- and probably you can't answer here today, whether the individuals with disabilities have the same constitutional rights that you and I share while they're in the womb.

Today Beverly Jones makes her statement to the Committee. You can read it here. Jones was one of the plaintiffs in the Tennessee v. Lane suit. When that decision came down, everybody seemed to understand how awful it is for a wheelchair user not to get into a courtroom. Let's see what Roberts might have to say about that. And let's see if Jones's testimony forces the media to finally write about disability issues in this Confirmation Circus.
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It seems to be a little of all three. I've blogged before about how the media hasn't paid much attention to the disability aspects of Roberts's record, and in fact I think that watching this week's process is very telling in this regard. We can watch the hearings on CourtTV, and we can read the transcripts. We can also watch the Justice For All Email Alerts website; they're putting out stuff that's either been reported in the news or is in transcripts. And ADAWatch is sending around emails of relevant material; yesterday they alerted us to this op-ed by Kim Moody of the Disability Rights Center of Maine.

We can also follow the news media, and we'll find out that they always focus on the hot-button issue of abortion -- Roe v. Wade -- almost to the exclusion of anything else. New York Times Supreme Court reporter Linda Greenhouse's Monday article is a classic in this regard -- she spells out all the "legal issues of the day" observers might want to pay attention to in the hearings -- and disability isn't one of them. I find this both amazing and very discouraging. About the only story I found about Monday's opening that even mentioned disability was the one by Knight-Ridder Washington Bureau reporters Stephen Henderson and James Kuhnhenn who reported that Judiciary Committee Chair Sen. Arlen Specter (R.-PA) said he wanted to find out Roberts's views on the Americans with Disabilities Act. Specter mentioned it in his opening statement but few news outlets reported it. You may recall that Specter had said this earlier as well.

So what are we learning from the hearings? Roberts is as closed-mouthed on his views about disability issues as he is on any other. Yesterday Sen. Mike Dewine (R-OH) got into questions about the Garrett decision, which has particularly rankled some members of Congress, because in that decision, the Court basically told Congress it hadn't done its job -- that it really didn't have real evidence of discrimination on the part of states against disabled people sufficient enough to warrant passing the kind of law the ADA is (was?) --a law that "abrogated the states' sovereign immunity" (to use some fancy legalese I learned; more about that here.) As you may recall, Congress had conducted a bunch of hearings before they passed the ADA; so telling them they didn't do their job -- which is essentially what the Supremes said -- sorta jerked their chain. At least it did for the members of Congress who were really into passing the ADA. This still rankles, and they really want to know if Roberts is likely to go along with pulling another stunt like that when he's on the Court.

As far as I can tell from my admittedly cursory reading of the transcript (this section kindly clipped out and provided by JFA), Roberts was as mealymouthed as ever. I frankly can't get a clue as to what Roberts thinks about this issue -- or if he thinks anything -- from reading this. But if this interests you, and especially if you know about all these cases he refers to, you should definitely read it.

In fact, if any of you legal minds out there would like to slog through the transcripts and pick out stuff that you think shows something or other about disability -- and comment for us about it -- I'd be delighted.

The hearings are revealing in a number of other ways, though. One of those ways concerns Judiciary Committee members' own sometimes startling views on disability. More about that tomorrow.
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received authorization to deploy four
rapid assessment teams consisting of nationally recognized special needs
emergency management practitioners into the Gulf region impacted by
Hurricane Katrina.

Surely they could have come up with a better acronym to identify people heading into storm-ravaged subtropical flooded swampy areas of our nation than ... S.N.A.K.E.. Or maybe not. Maybe they thought it appropriate. Or humorous. Or maybe they didn't think about it at all.

When you go to the NOD webpage their email directs you to, you find an ad sponsored by the Ad Council -- telling us that "September is National Preparedness Month."
No, I am not making this one up, either. I don't believe I could.
COMMENT-AUTHOR:Stephen Drake
COMMENT-DATE:9/12/2005
COMMENT-BODY:Mary,

I'll do you one better. The website of the Dept. of Homeland Security (www.ready.gov) is running the same ad on its site!

Do they really want to remind people they were focussing extra-hard on preparedness this month?
COMMENT-AUTHOR:Anonymous
COMMENT-DATE:9/13/2005
COMMENT-BODY:Well you could think of a SNAKE as a creature that may be able to travel into places that are considered difficult to access...
COMMENT-AUTHOR:Mary Johnson
COMMENT-DATE:9/14/2005
COMMENT-BODY:. . . yeah -- and bite people! Sorry, but the public image of The Snake, deservedly or not, hasn't yet been rehabbed to the point where folks will see the acronym S.N.A.K.E. and think anything but bad thoughts. I wish it were different. I like snakes myself. (And there's always Echidne.)
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Less than 24 hours before Hurricane Katrina began ravaging St. Bernard Parish with 140 mph winds and a 20-foot storm surge, Coroner Bryan Bertucci made an urgent call to the owner of St. Rita's Nursing Home near Poydras.

"I told her I had two buses and two drivers who could evacuate all 70 of her residents and take them anywhere she wanted to go," he said.

But Mabel Mangano refused the offer. "She told me, 'I have five nurses and a generator, and we're going to stay here,'" Bertucci said.

In light of the above, the email I received yesterday is even more interesting. It was sent by Julianne Haydel, RN, as a result of my long blog entry on the nursing home industry in Louisiana. Here it is:

As a healthcare consultant in Louisiana, I have many clients in the New Orleans area. One in particular has seven nursing homes in the area affected by Katrina. ALL of them were evacuated prior to the storm.

Your concern for the elderly is commendable and I share your passion. But, I think it is erroneous to assume that the tragedy of Saint Rita's is reflective of the nursing home industry at large.

First of all, consider the huge risk my client took by evacuating patients prior to a mandatory evacuation order. He went to a great expense to rent buses for patients and U-Hauls for mattresses. It was not feasible to bring beds. His only options for shelter were his existing nursing homes in Baton Rouge or shelters. He chose the former where his staff could care for his patients. But, the homes are in fact crowded. There are no vacant nursing homes available for evacuees here or anywhere else that I know of. Had anyone died without a mandatory order and had the storm veered away at the last minute, he would have been held accountable. He took the risk and evacuated as the vast majority of homes in the New Orleans area did. But make no mistake. Elderly people die during evacuations. They were not admitted to a nursing home because they were spry and fit!

I further agree that more money should be spent on care delivered in the home. Be advised that the waived programs do not provide skilled nursing care ? ¨  only sitters and unskilled aides. In order to receive skilled nursing care in the home, a medicare or Medicaid recipient must have intermittent needs ? ¨  chronic care is not covered. Furthermore, Medicaid in Louisiana only pays for fifty visits a year. Patients who require the judgment of a licensed professional for wound care, medication management, etc. are not helped by the waived programs. Anyone with a PEG tube for feeding or a urinary catheter cannot be cared for with our current systems. In other words, just because an elderly patient requires nursing care that could be easily delivered in the home does not qualify the patient for home health nursing care. This is a federal CMS guideline and has nothing to do with the state of Louisiana.

The fact that only one nursing home has been closed does seem upsetting on the surface. However, I deal with Jenny Caigle, who is program manager for nursing homes at the Louisiana department of health and hospitals regularly as well as the other program managers. I assure you that I could not bribe them, solicit a favor or in any way gain favor even though we have a very personable relationship. The program managers won't even have lunch with consultants. ¬When they are surveying, they rarely accept coffee. I had one client who tried to pull political strings with a small hospital and it backfired on him so badly he is still recovering from a year ago. What happens more frequently, in the interest of the patients, is that a nursing home owner will be told that he is no longer able to be licensed. In this case, the home owner may sell the home. By taking this approach, the nursing home residents are spared the trauma of having to move out and find another facility. Louisiana is a Certification of Need state and people are not free to simply open another home. With each change of ownership, there is scrutiny from local, state and federal regulatory bodies.

Is there room for improvement in Louisiana Nursing homes? Absolutely. But it must be paid for. I don't know who owns Saint Rita's and I suspect it is a single owner who didn't have an extra $25,000 to rent buses. It is a very low margin business. The guys you read about who make serious money do so because they own many, many homes. One home on it's own cannot support itself much less the owner. When the price cuts were reduced last year, the first thing that my clients did was hire additional staff.

And staff costs money -- especially in New Orleans where the nursing shortage has hit astronomical proportions. Nursing homes are competing with hospitals who are offering as much as $50.00 and hour for ICU shifts. Home health nurses are making between 25.00 and 50.00 per visit depending on the complexity of the visit. What ends up happening is the homes are left with two kinds of nurses. You have the nurses who are truly dedicated to taking care of the elderly and then you have the nurses who can't get a job anywhere else.

Again, I sincerely appreciate and share your passion about care of the elderly. But, often the problem is more complex that it appears on the surface.

As we now know from Rioux's posting, cost did not seem to enter into Mabel Mangano's decision not to evacuate St. Rita's.

Haydel's email is interesting and sheds more light on the kind of intractable situation that exists nationwide within the nursing home industry. The status quo is always easier to maintain than to let go of, and generally things can change radically only by forces imposed from outside. Louisiana has an opportunity -- no, an obligation, now -- to change its antiquated institutional system. We should all be involved in the public debate to see that it does.
COMMENT-AUTHOR:Carrie Ann Lucas
COMMENT-DATE:9/10/2005
COMMENT-BODY:This highlights the need for consumer directed attendant care. In Colorado people with severe disabilities can hire, train, set hours and wages, and if necessary fire PAs. We have near-complete freedom to hire who we wish, as long as we stay within our budget. I and my children need assistance with many "nursing" tasks, but I am perfectly capable of training non-medical personel to do them. I don't need a nurse, and I don't need to pay competetive nursing wages, but I can pay my PAs a living wage, and receive help with the "medical" and "non-medical" tasks I need to live my life independently, and all the while I save the State of Colorado around $8000 a year over what they would pay for a home health agency to provide substandard care that does not meet all my needs.
COMMENT-AUTHOR:Evonne
COMMENT-DATE:9/12/2005
COMMENT-BODY:The "Had anyone died without a mandatory order" section is going on my fridge.
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