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January 30, 2006

Haleigh Poutre Goes to Rehab

Haleigh Poutre, whom Lisa Blumberg wrote about last week, was moved to a "special unit of a Brighton rehabilitation hospital " late last week.

The Boston Globe's Patricia Wen, who's covered the Poutre story since last fall, wrote that the girl was now "living with nearly 40 other patients like her who have neurological and other injuries that require round-the-clock care and extensive physical and speech therapy."

I'm just going to quote a few things from the story (entire story here -- Girl with damage to brain spends first day in rehab - The Boston Globe) -- things that caught my attention -- things that always catch my attention when they are in stories.

The first thing is in the paragraph above. Wen writes that the injuries require "round-the-clock care." That phrase "round the clock care" is one that is often used as a cliche, without thinking, by both reporters and I suppose the medical folks that they talk to. It nearly always could be found in descriptions of Christopher Reeve. In many cases no doubt it is true; I do not question its use in Wen's story. But I do believe it -- and the idea behind it -- is also found when people are thought to be too expensive to maintain. (Wen tells us that this "rehab" place costs $1,500 a day as compared to the $4,000 a day cost of the hospital she'd been in.) It's most often used as an explanation as to why someone is put into a nursing home, rather than living on their own with personal assistants. "Round the clock care," y'know. As though that should be explanation enough; an end of the matter. Few in society even question why needing "round the clock care" should mean "nursing home." That's the problem I have with the phrase.

Wen's story tells us that

The 11-year-old Westfield girl arrived at Franciscan Hospital for Children on Thursday, about a week after she surprised doctors by breathing on her own and showing increased responsiveness. On Tuesday, the state's top child-protection official ... said he noticed her picking up toys on command and tracking his movement with her eyes.

Nonetheless, I suspect that there are still folks who see this case as another in the Terri Schiavo genre -- who think the right-to-lifers are making all this up about "responsiveness." Later in the story, Wen reports that " Some neurologists who are not directly involved in her care say that it appears she might be moving from a vegetative state to a minimally conscious state." Gotta have diagnosis, y'know; a label. Bioethicists are also very skilled at assigning those labels.

At the Franciscan rehabilitation unit, patients typically stay for about two months and attempt to improve enough so they can return home, sometimes learning to do such basic things as swallowing. More than half of the patients are attached to feeding tubes, and roughly half breathe with the help of ventilators or tubes attached to their trachea.

Haleigh still breathes through a tube attached to her trachea and is fed through a tube.

Doctors said they generally know if a patient is going to make significant strides or will stagnate after six months. Of the patients who do not progress, many go to a nursing home.

The three paragraphs above sum up the entire case for the independent living movement -- the movement that still hasn't made much of a dent in people's thinking outside the confines of disability rights circles. If you can't "progress" then you go to a nursing home." And Wen didn't write -- but she could have -- "end of story:"

''To be here, you have to have some rehabilitation potential," said Dr. Virginia Kharasch, a pediatric pulmonary specialist.

It's also useful to note that none of the three people MA Gov. Mitch Rommey appointed to be on the panel to investigate how the state had handled the case since last fall has anything to do with either disability rights or independent lving. One is the president of a national children's advocacy group and the other two are doctors.

And certainly it would never have occurred to anyone to invite onto the panel anyone who had ever actually suffered brain damage or been before in a "vegetative state." That idea would be ludicrous.

Patricia Wen can be reached at wen@globe.com.  

Posted by mjohnson at 03:06 AM | Comments (3)

January 24, 2006

Amazingly naive, or...

Or what? I'm not sure I can come up with a word.

The American Association of People with Disabilities has sent what it calls a "final letter" to the Senate on the Alito nomination. It's really an embarrassment for disability rights: After expressing their "ongoing concerns regarding the Supreme Court's approach to Congressional power to protect individuals with disabilities and others against discrimination by states," they go on to say this:

Although we continue to have questions about whether replacing Justice O'Connor with Judge Alito will result in an improved understanding of the unique and proper role of Congress to make findings and craft remedies when the states are violating the civil rights of their own residents with disabilities, we note some hopeful signs from Judge Alito's response to questions from Senators Coburn, DeWine, Specter, and Biden at his confirmation hearings.

When asked by Senator Coburn to comment about what is important to him personally and how that influences his approach to cases, Judge Alito made several observations, including the following: "When I have a case involving someone who's been subjected to discrimination because of disability, I have to think of people who I've known and admire very greatly who've had disabilities, and I've watched them struggle to overcome the barriers that society puts up often just because it doesn't think of what it's doing ...

The word comes to me now: "Aaaaarrrrggggghhhh!"

"This statement gives us some hope that Judge Alito has a better appreciation of the nature of disability discrimination than some of the members of the current Court," they continue, and finally end with this:

We share many of the concerns that have been expressed by some of our colleagues in the disability community. For us, however, there are enough positives in Judge Alito's record and responses to give us hope that he will move the court in a positive direction for our community."

As humorist Dave Barry says: I am not making this up. Read it yourself here.

Whatever do they hope to accomplish with this piece of toadying? The only thing I can think of is to keep the Republican pro-Alito Senators pacified, so their future lobbying chances aren't hurt too badly.

Seems a pretty rotten approach for a national group concerned with disability rights, though.

I guess it's me who's naive.

Posted by mjohnson at 11:27 AM | Comments (3)

January 23, 2006

Shamed into silence?

We've posted a fine article by Lisa Blumberg in Ragged Edge's CloserLook dept. today on the strange and sad case of Haleigh Poutre, the abused western Massachusetts 11-year-old who lapsed into a coma last fall and is now evidently coming out of it -- just a day after the Massachusetts Supreme Court OK's cutting off "life support." Please read Blumberg's article. And please post a comment there as well.

We want to know what you think: Should national disability groups be doing something? What should they be doing ? Should they be speaking out on the Poutre case? Issuing public statements? Which groups should be doing this? And when?

Should the disability community be leading the country in discussing why Haleigh Poutre got the "right to die" and now evidently has the "right to live" again? Or, as Blumberg writes, should we just "let the bioethicists sort it all out"?

Blumberg is actually addressing that question, she says, to liberals in this country. I think the question's a good one for both liberals and the disability community. I want to think both groups share the same values. Maybe that's naive.

Blumberg told me, when we were editing her story, that columnist Ellen Goodman had made the point in a column about Terri Schiavo last spring that to call Schiavo "disabled" ("handicapped") "degrades the meaning of the term" -- this is Blumberg here recalling Goodman; it may not be Goodman's exact words. But there was, Blumberg reminded me, almost a consensus among liberal commentators that Schiavo was not "disabled." Not really. She was "a vegetable."

And because of all of the "see? she had no brain!" stuff that was said in the wake of the Schiavo autopsy, many of us feel shamed into silence.

OK, so now we have Poutre. She was a vegetable and now maybe -- she's not?

The conservatives -- the "right to lifers" -- have taken up the Poutre case. The conservative blogs are all over it.

From the progressive side of the blogosphere? Silence -- at least, as far as I've seen. The rest of us are being "sensible." Not saying the kinds of things we said about Terri Schiavo.

Leftie bloggers' combatant in the Life Support Shouting Wars was Tirhas Habtegiris. She was conscious.

If they're conscious, they should live? Is that what is coming to be said by default in this country? It's hard to tell. We've heard nothing yet from Ellen Goodman, who is a Globe columnist -- although the Poutre case has pretty much been the Globe's story (actually, reporter Patricia Wen's) since November.

It sort of seems to me that progressives have gotten themselves into a box with that mantra of the "right to die" being all about "privacy" and "choice" -- and little else. Now they really can't talk about Poutre without looking like right-to-lifers. To me, that bespeaks at a mimimum a failure of imagination on the part of us who want to call ourselves progressives. It also seems to me to signal an utter lack of awareness -- or disregard -- for things the disability rights movement has said in the past about cases like these.

Haleigh Poutre and Tirhras Habtegiris seem to me to function in the public mind not so much as real people as pawns in the culture wars. Steve Drake of Not Dead Yet has, I think, a good way of putting it: He says neither the left nor the right truly claims disability issues as their own. Both "are really just invested in their broader culture war -- with neither side seeing us as part of the culture they're defending. We're simply collateral damage."

On Dec. 6, The New York Times's Pam Belluck, in a 1,142-word story, reported on the Poutre case (Custody and Abuse Cases Swirl Around a Troubled Girl on Life Support ). On Jan. 18, the Times ran Belluck's550-word story on the MA Supreme Court's ruling OKing removal of life support (Boston Court Approves Ending Life Support for Girl in Coma ). News about reports that the Poutre girl was responding came in the 4th of five 100-word articles in the Times's Jan. 19 National Briefs column (MASSACHUSETTS: COMATOSE GIRL SHOWS RESPONSES): "...agency officials said the comatose girl's condition might have changed. 'She's having some responses,' a department spokeswoman, Denise Monteiro, said of the girl, Haleigh Poutre. Ms. Monteiro said doctors would perform more tests today 'to see what the movements mean.' "

Yesterday I was flipping through The Times and came upon the article about Sgt. Harold Gray. Because I knew Ragged Edge would have Blumberg's article online today, I realized I was reading the story with the Poutre case in mind. Here are some excerpts from that Jan. 22 story:

Even though he is alive, Harold Gray's relatives talk about him in the past tense.

On Dec. 26, 2004, Sgt. Gray, then 34, a member of the 133rd Engineer Battalion of the Maine Army National Guard, was driving in a convoy outside Mosul, Iraq, when a bomb blew up underneath his truck.

He has been in hospitals ever since. Blind and severely brain damaged, he cannot speak, move voluntarily or communicate. He is fed through a tube implanted in his stomach. Though he appears unaware of his surroundings, family members say they believe he hears their voices when they visit. But his medical records describe his condition as a "persistent neurovegetative state" from which he is unlikely to emerge.

"They don't think he has any chance for recovery," said [his wife] Laurie Gray....

"I've accepted this is the way it could be, but I also haven't given up hope," Ms. Gray said. "You never know, there could be a miracle."...

His former wife, Jessica, said: "He always used to say he wouldn't want to live not knowing anything. If he couldn't function, if he couldn't recognize his kids, he wouldn't want to live."

Laurie Gray said removing her husband's feeding tube was something she could never do. But she has signed a do-not-resuscitate order...

Posted by mjohnson at 10:59 AM | Comments (1)

January 20, 2006

The Big Bell

Over in Ragged Edge's News Dept. we've posted a story that shows the fight for access is just as overwhelming on the East Coast as out on the West Coast.

Seems the U.S. Department of Justice won't bother to investigate complaints Roanoke wheelchair user Robert Eggers filed last year. The businesses are inaccessible to wheelchair users. Their front entrances have what the newspaper called "ledges" -- steps. Some are 5 inches high.

That's the same kind of access barrier wheelchair users find here in Louisville. I was involved for awhile in a group here called MetroSweep, modeled on a project organized by a group in Harrisburg, PA. MetroSweep members were also trying to gain access to businesses that had this kind of a step at their front entrances. Putting these "ledges" at entrances to businesses was a common practice until the last few decades, of course.

The Roanoke businesses, instead of installing ramps, have installed "buzzers and signs for disabled people."

The same pattern we see on the West Coast in coverage of the issue is repeated in story from the Roanoke paper: businesses are doing the best they can; some disabled people, after all, don't mind; and after all Eggers hasn't really tried to get in, anyway...

From the Roanoke Times story:

Johnny Baublitz, a 28-year-old Northwest Roanoke resident who uses a wheelchair, said of the buzzers: "It's a slight improvement, but they could do a lot better, I think."

Several of the people named in the complaints have said they could not make extensive accessibility changes to building exteriors because doing so could compromise the building's historic nature.

Bill Kopcial, owner of Ernie's, said Eggers had not yet tried to come and eat at the restaurant since a buzzer and handicapped sign were installed....

"You can't rebuild downtown Roanoke because of him," Kopcial said. (Read the entire story.)

The story doesn't say so, but I just bet that the "buzzers" are really the "Big Bell" promoted by a group called Inclusion Solutions. That group is a whiz at marketing -- they seem especially good at finding and selling to businesses that have been targeted by activists.

The Big Bell solution was suggested in Louisville, too. The MetroSweep folks didn't like that at all. Read what they said about it on their website.

Posted by mjohnson at 10:41 AM | Comments (0)

January 18, 2006

Physician-assisted suicide is legal

Our CloserLook article on Ragged Edge gets at some of the many many issues that yesterday's Supreme Court ruling in the Gonzales v. Oregon assisted-suicide case raise.

Not Dead Yet issued a press release yesterday -- Diane Coleman has been on the news more this time, it seems, than before. That's good. Very good.

In the release, Diane says,

we continue our criticism of the Administration for not bringing the challenge to the Oregon law under the Americans With Disabilities Act. As Justice Kennedy points out, the law "only" applies to very sick people. Making suicide easy and socially approved for people who, according to the Oregon Reports, feel like burdens on their families, is discrimination against a socially devalued group. Assisted suicide is not a benefit, it's a threat....

If the values of liberty really dictate that society legalizes assisted suicide, then legalize it for everyone who asks for it, not just the devalued old, ill and disabled. Otherwise, what looks like freedom is really only discrimination.

I wonder if down the road we won't see cases filed by with people with severe spinal cord injuries or ALS, arguing that laws like Oregon's, which say that you must be judged -- by two physicians -- that you have less than 6 months to live -- are discriminatory in that they do not allow assisted suicide for non-terminal but severely disabled people who want to end their lives. Sort of like ADA cases are filed against public accommodations not open to disabled people. If assisted suicide is a right, the argument would go, why can't a severely disabled person who wants it be allowed to have it?


Our former prez Bill Clinton is credited with saying that abortion should be "legal and rare." Of course that was an excellent thought, albeit unrealistic. It goes directly to the nexus of law and culture.

My epigraph to Make Them Go Away reads, "A law cannot guarantee what a culture will not give."

I find myself coming back to that epigraph in the current situation. Nothing will really change in the assisted suicide debate until our culture's attitudes about life with disability change. Movies like Million Dollar Baby, which we were all het up over this time last year, won't stop being made because activist crips yell about them. They will continue to be made because they express what our culture actually believes. Laws don't change that.

Posted by mjohnson at 03:50 PM | Comments (2)

January 16, 2006

Time for a Truth Team

On the heels of Sacramento Bee columnist Marjie Lundstrom's Thursday article, Litigious crusaders for disabled strike at mom-and-pop shops (see my blog entry here) comes Saturday's Lundstrom column, Balancing act: Enforce disabilities law, prevent serial lawsuits.

Here's the bottom line: Do we in California really think the best way to enforce the federal Americans with Disabilities Act - and it must be enforced - is to let a handful of individuals and lawyers make lucrative livings by filing thousands of lawsuits?

On Friday afternoon, disability activists held a press conference to announce opposition to the anti-access-suit initiative being readied for voters. The press conference made news only on Sacramento's ABC TV affiliate. The report it aired seemed to be nothing so much as an opportunity for the reporter to get in lots of quotes from the business community about how awful crip lawsuits are, and how something must be done about them: in other words, it gave attention to the initiative more than to opposition to it.

This is how the news report begins (note that all of this is about the initiative and the good it will do, not about the problems the initiative's passage will cause disabled people):

The Opportunity to Repair Act of 2006, which is being backed by California homebuilders and restaurant owners, would give developers and business owners
greater opportunity to fix building defects that don't comply with federal and state disability access laws before lawsuits could be filed against them. Advocates of the measure said it's time for businesses and homebuilders to fight back against those manipulating the Americans with Disabilities Act. They said many small business owners receive threatening letters demanding they pay thousands of dollars or face lawsuits that are costly to defend.

Backers of the initiative say the threats are little more than extortion. They claim their proposed law would ensure fair treatment of businesses, while still achieving accessibility for the disabled.

Finally, near the end of the news report, we hear about the activists opposing it:

Disability rights proponents argue the initiative only helps ensure that builders and business owners won't be held accountable for safe housing and civil rights violations.

Not much, eh?

Well, they did air a quote from Californians for Disability Rights' Laura Williams:

"This initiative jeopardizes the proud history of California disability civil rights," Laura Williams with Californians For Disabled Rights said. "It would be heartbreaking if there were no laws protecting us. There are laws that require [buildings] be accessible and they have no right to continue to be thescofflaws that they are."

Besides not getting the name of CDR correct -- it's Californians for Disability (not Disabled) Rights -- it doesn't seem this quote has much substance about the problem with the initiative. Especially not after the start of the news report which detailed all the problems with crips filing suits.

You can read the full news report here.

On the heels of that news report came Lundstrom's Saturday column. It has all the by-now-familiar stuff:

What makes California so attractive to serial suers is that the state is one of only three in the nation that allow plaintiffs to collect monetary damages as well as attorneys' fees in ADA cases. As I described Thursday, California's fiscal "incentive" has opened the door to a cadre of professional plaintiffs, who haunt courthouse halls and go on hunting expeditions for businesses with even the slightest ADA infractions - some of which don't even involve access.

Whenever I read sentences like these -- and it seems I read them every time I'm sent a news article about access in California -- I wonder: why aren't the crips getting to these reporters and showing them that the disability rights side of the issue is the correct one?

Would it be all that complicated to do? Access activists could form a Truth Team -- you'd only need 6 or 8 activists to do this -- who would monitor the news and immediately contact the reporter by email or phone when a story appeared. They could have a "talking points" sheet that would deal with each issue that comes up over and over again.

Lundstrom writes that "serial suers" who "haunt courthouse halls and go on hunting expeditions for businesses with even the slightest ADA infractions - some of which don't even involve access."

This point -- that some "infractions" "don't even involve access" -- is one that crops up again and again.

Activists could refute it with a list, a breakdown of the kinds of "ADA infractions" that have prompted lawsuits -- and a clear explanation as to why these "infractions" are serious matters; why they actually do prevent access, and keep people away from that business altogether.

Most activists can rattle off the real facts: That a toilet with a door 1 inch too narrow means no toilet access at all. That a two-inch lip at an entrance ("minor," say opponents of access suits) can prevent a wheelchair user entering altogether -- unless they have "help".

Activists, tell those stories ! Explain what the measurements mean. Use examples. A business with a 2-inch lip at the entrance means a wheelchair user cannot get in -- not that she "has trouble" getting in, or "needs help" getting in -- no; it is truly a barrier. California and federal laws were passed specifically to remove these kinds of barriers. That point should be made, over and over.

Break it down. Open it up. Use examples. Search through the anti-access stories to find the common misconceptions, and list them, and then explain why they are, indeed, misconceptions -- that is, false.

Create a "talking points" sheet explaining exactly why a 2-inch step is in fact a real and serious access barrier. Explain that a door too narrow by an inch or two can completely block a wheelchair user's entry to a restroom. Show that a door one inch too narrow might as well be 10 inches too narrow -- that "can't get through" means just that. Explain just how a missing curb cut means no access.

Another often-repeated line is that only a few "disgruntled" wheelchair users file suits ("serial suers.") The Truth Team should tackle this head-on: The Team can talk among themselves about why it is that so few crips file suits (causing the few who are brave enough to sue to be labeled "serial suers"). Once the Team has made a list of clear reasons about why more disabled people don't sue, they can explain these reasons to reporters. They can talk about the emotional difficulties with suing, the embarrassment, the worries, the fears.

And -- I really hesitate to suggest this, but it can work if done correctly -- Team members can get a particularly difficult reporter to spend a day in a wheelchair and travel with the reporter to stores in places like Julian, CA. Ask the reporter what she/he would do when confronted with a door too narrow to pass through -- by an inch or two. Remember what Mary Burrell learned: any unbiased reporter will learn it as well.

For yes, even biased reporters can be educated. But the work has to be done.

The damage reporters do can be defused with facts.

Truth Team members have good place to start: Marjie Lundstrom.

Saturday's Lundstrom column in the Bee was aimed at educating the public about California Assemblyman Tim Leslie's bill. Ragged Edge has written about Tim Leslie's efforts before. Leslie seems to be one of the main folks behind the push to derail California's access law damages provision.

Lundstrom gives Leslie his quote -- modified a bit this year, it seems:

"The ADA should be implemented fully, but it should not be used by unscrupulous lawyers as a method to rip off small businesses over little technicalities," said Leslie.

A few paragraphs down, Lundstrom explains Leslie's latest plans, going on to show how the disability community has thwarted earlier efforts:

His new bill, AB 1847, would substantially increase tax credits for access-related business expenses. His more aggressive measures in years past, including one that would have precluded the awarding of damages where access wasn't significantly impeded, all went nowhere. The politics have been emotional and bruising for both sides, with disabled rights advocates appearing en masse in wheelchairs to protest measures they perceive would water down the ADA. Sen. Charles Poochigian, R-Fresno, took a pounding last year over his bill that would have allowed business owners time to fix alleged violations before being sued for damages. Poochigian said this week he still considers ADA abuse a "serious problem" and is weighing whether to return with another bill.

I continue to believe that part of the disability community's problem is that crips don't talk to reporters, don't work with them, don't try to educate them, showing them all the ins and outs of access -- and showing them, too, the real problems the lack of access causes in the lives of real people. I think the disability community is either too angry -- or maybe too afraid -- to do the work with reporters that is really necessary to turn the tide. Or maybe too lazy. But I don't think that's it. I really don't know what it is.

As for reporters and editors, I think it simply doesn't occur to them that a whole lot of people suffer from the lack of access. I don't believe they hear from enough articulate disabled people, and few have had the kind of experience yet that editor Mary Burrell had down in Seminole, FL.

Leslie and Sen. Charles Poochigian (R-Fresno) and their minions, on the other hand, seem to spend a great deal of time courting the press. It's no wonder news coverage is the way it is -- given the circumstances it could hardly be different.

Those of you who understand why people like Theodore Pinnock file suit should write to Lundstrom and explain it -- not to yell at her but to try to convince her of the issue. Those of you reading this you who can articulate why so many wheelchair users are afraid to sue -- meaning that the few who do sue are seen as vultures -- would do the disability community a great service by emailing Lundstrom with stories she can use.

Marjie Lundstrom's email is mlundstrom@sacbee.com .

Posted by mjohnson at 01:56 PM | Comments (1)

January 13, 2006

Yet another 'serial suer' story

Bill and Sam Wu of Elk Grove have joined the burgeoning rolls of California business and property owners under siege by serial suers.

The subject of this Jan. 12 Sacramento Bee story by reporter Marjie Lundstrom is "Scott N. Johnson, who is quadriplegic and drives a full-size van with hand controls and a wheelchair lift." Lundstron says Johnson is "a prolific Carmichael, Calif., attorney, who has filed more than 150 disability-access lawsuits since August 2003."

I haven't heard of Johnson; haven't seen any stories about him, haven't read about him on any disability email lists that generally keep up with this sort of thing. But it's clear that this reporter is using the tired old story model used to write about crips who sue for access. No new angle here!

Lundstrom writes,

California, as one of only a few states that allows for monetary damages and attorneys' fees in ADA cases, is seeing an explosion in disability-access lawsuits. And a huge chunk of those cases is coming from just a handful of plaintiffs and attorneys, people whose litigious track records have made many business owners -- big and small alike -- suspicious and wary of any disabled person who comes on their premises.

It really gets old after awhile. The story is always the same in this "suing for access" genre, as I wrote in my Dec. 19 blog entry. The themes touched on are always these:

* the attorney is just out for money.
* filing lawsuits is an evil act against small businesses.

This story also features the fairly common subtext that suits just end up hurting disabled people themselves. In this story, the form this takes is the "disabled people are hurting themselves because now businesses are wary of them" line.

I understand that activists associated with the group Californians for Disability Rights are getting ready to mount a campaign -- which I hope will be very very public -- against the proposed voter initiative being readied by CA business groups to gut state access laws and take away the damages provision.

As far as I'm concerned, a strong counter-offensive mounted by disability rights groups can't come a moment too soon. I continue to wonder why the CA disability community remains so relatively quiet in the media about this constant barrage of biased coverage. Some speak out; some write op-eds. But the output should be much much greater!

Read Lundstrom's
Litigious crusaders for disabled strike at mom-and-pop shops (Sacramento Bee).

Posted by mjohnson at 01:58 PM | Comments (2)

January 12, 2006

Gimp groups, Alito and 'deaf'

On Monday Ragged Edge reported that the American Association of People with Disabilities and the National Association of the Deaf had sent a letter to Senate Judiciary Committee Chair Arlen Specter (R.-PA) and ranking committee member Sen. Patrick Leahy (D-VT) urging them to ask Supreme Court nominee Samuel Alito some hard questions about his views on disability rights.

In late December, both the AAPD and the National Association of the Deaf issued statements expressing "concern" about the Alito nomination. While other disability groups have spoken out opposing the nomination , these two groups remain in the middle of the road. Seems sad.

After all the criticizing I did last summer about how groups didn't speak out on the Roberts nomination, the current statements from the groups opposing Alito are a good sign.

And I was glad to see that the website civilrights.org posted the NAD press release. I've been noticing that articles citing opposition to Alito often do now include the phrase "disability rights groups." That's progress -- and progress is occuring, despite misses like the one I discussed Monday.

I was searching to see what mass media news organizations might have written about the National Association of the Deaf and Samuel Alito (didn't find anything). But I did find these things:

Every American should shudder at the prospect of an ethically tone-deaf judge sitting on the one institution in Washington ... ( Baltimore Sun)

Russert, acting as if he were deaf, asked Schumer again about a filibuster against the Alito confirmation. (American Politics Journal, FL)

Alito ... also must avoid the brutally frank and politically tone-deaf answers... Newsday)

Anti-Alito Tour Is Drawing Small Crowds: "This was meant to inflame the grass roots, and it just seems to be falling on deaf ears. (New York Sun)

Okay. I discussed something like this awhile back. Then it was the word "blind" being used as a pejorative. Now it's "deaf."

I continue to think it's a big big problem. Even though, it seems, I'm pretty much a one-woman band on this one.

Posted by mjohnson at 05:56 AM | Comments (2)

January 10, 2006

Using Tirhas Habtegiris

Last Tuesday, Slate posted "Do the Poor Deserve Life Support? A woman who couldn't pay her bills is unplugged from her ventilator and dies. Is this wrong?" By Steven E. Landsburg. Economics prof Landsburg, who writes a regular economics column for Slate, has published several popular books on economics.

Tirhas Habtegiris, a 27-year-old terminal cancer patient at Baylor Regional Medical Center in Plano, Texas, was removed from her ventilator last month because she couldn't pay her medical bills. The hospital gave Ms. Habtegiris' family 10 days' notice, and then, with the bills still unpaid, withdrew her life support on the 11th day. It took Ms. Habtegiris about 15 minutes to die. (Read article.)

Note that this unplugging happened last month. Mid-December.

The blog entry on Daily Kos where Landsburg learned about Habtegiris was posted by "YucatanMan" on Dec. 14.

Until the Slate entry (sent to me by a reader), I'd heard nothing about this death. Nothing from any of the disability groups who keep up with this sort of thing. I've been away from Kos myself; although I've posted entries there, I haven't done so for several weeks.

My first thought: how can such a story have slipped by so many of us -- maybe all of us who write about disability rights? My second thought: did the story of Tirhas Habtegiris's death get any media attention beyond blogs in cyberspace? It couldn't have gotten too much, I figured, or we'd have heard of it.

Which always brings up for me the next thought: about how information comes and goes, and spreads, or is buried, or never comes out at all. But that's for another blog.

Turns out YucatanMan got his information from a TV news story on the Dallas-Forth Worth CBS affiliate. A search of Google News strongly suggests that even in Dallas the story wasn't that big. Dallas-area daily newspapers didn't cover it -- the search turned up 4 news items.

So we have here a death by turning-off-of-ventilator. And we have the political uses of that death.

The first thing that could be said about deaths like Habtegiris's is that they are not uncommon. The second thing that can be said is that they go mostly unreported in the media. They are the result of futile care policies which people like Wesley Smith and Not Dead Yet have been trying to tell us about for years.

Futile care policies are increasingly common in hospitals. Like virtually everything else, they are interpreted as good things by some people and bad things by others.

People who believe that healthcare rationing is sensible and crucial in our economy applaud futile care policies, saying that for people who are not going to recover and who have no quality of life, they make sense. People called "life advocates" ("right to lifers") see them as weapons for institutionalized murder. But in this case, it was folks at the other end of the ideological spectrum yelling "murder!"

Habtegiris's Leftie bloggers see racism and classism at the root of Baylor's decision to turn off the woman's respirator. They call the futile care policy that occasioned Habtegiris's death institutional murder as well.

Strange bedfellows, eh?

When you scratch just a little bit beneath the surface of almost any contentious social issue, more of than not you find strange bedfellows. It happens so often that if we weren't so keen on loving our categories, we might start to think that our "strange bedfellows" concept itself is flawed.

Perhaps what is strange is that we believe there are clear distinctions in our society: left/right, conservative/progressive, Republican/Democrat. And then when we find folks crossing those lines on issues, we say they make "strange bedfellows." Maybe what's actually strange is our conventional belief that people stick to one ideology down the line.

The other interesting thing is how quickly an individual's death turns into propaganda for whatever horse is being ridden at the moment.

Thus we have Slate's Landsburg and Kos's YucatanMan using the same woman for two arguments that seem opposed.

But below the top layer of duff, they seem more pointless than anything else.

From a Kos commenter:

The culture of life fights right to die legislation every chance it gets.  

If this woman had asked to have her respirator removed they probably would have arrested her doctor for assisting suicide.

Landsburg says the Daily Kossacks are "appalled because 'economic considerations,' as opposed to what the bloggers call "compassion," drove the decision to unplug Ms. Habtegiris." Here's what YucatanMan wrote on DailyKos:

No one here can forget the spectacle made over the death of Terri Schiavo, whose brain had died long, long ago.  But in Texas, the law George W. Bush signed as governor allows doctors to inform the family that further treatment is hopeless (and costly) and Pull the Plug.  Literally.

In the latest case to escape the Culture of Life warriors, Tirhas Habtegiris, a young woman and legal immigrant from Africa, was CONSCIOUS and responsive when removed from a respirator and allowed to die.
Let me rephrase that:  She was killed by doctors who removed the ventilator keeping her alive. And this action was fully legal .... Her body was ravaged by cancer, but she was alert. She was responsive. (Read entire blog entry.)

Landsburg thinks the Kossacks simply don't understand economics:

A policy of helping everyone who needs a ventilator is a policy of spending less to help the same class of people in other ways.

The dead Tirhas Habtegiris began to find a ghostly half-life in cyberspace, mostly on leftie blogs: from the Left Coaster 's blog entry:

When I first read this story, I was incredibly outraged. After all the weepy crap we heard from the so-called pro-lifers over Terri Schiavo, it becomes clear that these 'religious' types are pure hypocrisy on two feet - they are only interested in maintaining WHITE life.

Tirhas Habtegiris is clearly not white.

Where were all of your Good Christians who interrupted your lives to go protest in Florida on Terry Schiavo's behalf? Why weren't you in the streets of Plano, Texas demanding that Baylor Regional Medical Center keep this woman alive?

From Jeff on Babble:

"Tirhas Habtegiris, a 27-year-old terminal cancer patient at Baylor Regional Medical Center in Plano, Texas, was removed from her ventilator last month because she couldn't pay her medical bills. The hospital gave Ms. Habtegiris' family 10 days' notice, and then, with the bills still unpaid, withdrew her life support on the 11th day. It took Ms. Habtegiris about 15 minutes to die."

PS. She was black.

I am trying to get my mind around not only what happened to Habtegiris, but what these blog posts and comments -- mostly by people who support legalizing physician-assisted suicide -- reveal about the larger issue out here in society where people like Habtegiris are dying as a result of futile care policies every day, where their deaths are going unreported in the media, and where the movement for the right to die will heat up again as soon as the Supremes rule on the Gonzales v. Oregon case.

What I get from the Kos commenters, overall, is this sentiment: Habtegiris was murdered because she was poor and black. (A number seem surprised to learn, from fellow commenters, of the existence of "futile care policies" altogether. Not surprisingly, they don't like what they learn. ) Many seem to believe it significant that she was removed from her respirator in George Bush's state. The commenters note that Habtegiris wanted to live just a little bit longer, and wasn't allowed to.

I despise what George W. Bush and Co. are doing to this country, and make no bones about it. But much of the posturing about Habtegiris seems to me to be more than anything else a chance to yell about Republicans in general and right to lifers in specific -- and not much of anything else.

Is it too much to ask that our progressives go a bit deeper in their analyses?

Posted by mjohnson at 03:38 PM | Comments (3)

January 09, 2006

Missing in 'action'

See anything missing in this list from Orlando Patterson?

Identity politics took its modern form during the second half of the last century. It emerged as an emancipatory mode of political action and thinking based on the shared experience of injustice by particular groups - notably blacks, women, gays, Latinos and American Indians. It is a movement born in a double negation: the rejection of rejection, through the proud, self-conscious union of those who have been defined as belonging to an excluded group. (From "Being and Blackness," a review of 'We Who Are Dark,' by Tommie Shelby and 'Creating Black Americans,' by Nell Irvin Painter in the Jan. 8, 2006 New York Times Book Review.)

Patterson is identified in his bio line as the John Cowles professor of sociology at Harvard University.

Perhaps Prof. Patterson doesn't think disabled people are any kind of a group at all. Or perhaps he didn't think about them at all.

Posted by mjohnson at 05:42 AM | Comments (4)

January 06, 2006

Unanticipated access advocacy

I've been a fairly harsh critic of "day in a wheelchair" activities and "awareness days" -- but I have to admit that sometimes -- done right -- they can work wonders. Fresno, CA, activist Ed Eames wrote on Ragged Edge back in 2003 that he'd found that putting Fresno officials in wheelchairs -- and sending them out and about with a disabled companion -- got results.

Mary Burrell, an editor at the Beach Beacon and Seminole Beacon newspapers in Florida, wrote yesterday about her experience using a wheelchair off and on --- for a month! Interesting idea:

Recently, two family members and I decided to take one month of personal experience with wheelchairs and rate the local spots we frequented during that time. Our original thought was that we could recommend some of the finer businesses in this column - and give them a kudo.

Well, it was a good idea. Fortunately, Burrell minces no words about what she discovered -- the same thing virtually any wheelchair user might expect:

Almost without fail, any facility we visited provided minimum accessibility for wheelchairs....

Often, when wheelchair users say such things -- such as attorney Ted Pinnock who found this to be the case in Julian, CA -- they're vilified as whiners and complainers who want to punish businesses. When people like Burrell -- "credible" nondisabled observers who get into wheelchairs and discover the same thing -- they're not so easy to dismiss.

Seems to me that one of the things this reveals is prejudice: Disabled people can be dismissed or vilified; nondisabled people can't.

Chew on that for awhile. Remember the 1964 book Black Like Me? I'm being very glib here: it was by a white man who tried to "pass as black" for awhile to report on segregation. (Here you can read a little bit about how the book was received back then and what's thought about it today.) As now for disabled people, more credibility was thought to be attached to a report by someone "like us":

Griffin writes of the small but humiliating obstacles in everyday life. For example, he spends much of his time looking for "a place to eat, or somewhere to find a drink of water, a restroom, somewhere to wash my hands." At a rest stop in Mississippi, the white bus driver doesn't allow the black passengers to get off to use the restroom. Griffin writes: "I sat in the monochrome gloom of dusk, scarcely believing that in this year of freedom, any man could deprive another of anything so basic as the need to quench thirst or use the rest room." (Read essay.)

Today, people like Burrell give credibility to the claim made by wheelchair activists that despite the ADA, access in most communities is spotty at best and often so scattered and poor as to make people pretty much decide to throw in the towel altogether and forget about pushing for access.

More from Burrell:

Retail stores, for example, seem to put every obstacle possible in front of the disabled, from narrow aisles to doors that are difficult to open, to restrooms that are absolutely impossible to use when maneuvering in a wheelchair.


Every building with double doors - and without an automatic opener - should be retrofitted. How a person in a wheelchair is supposed to open one heavy door, I don't know. To have one door after another, like at fast food establishments, is just cruel. Yesterday, I found some poor lady just sitting outside in the cold waiting for someone to come open the door for her.

As I've noted before, no law, anywhere, requires automatic doors. Access advocates in the 1970s and 80s were counseled not to try to get such a provision into access codes; it would be asking for "too much." And such a law would never pass in today's anti-access climate. Yet the lack of automatic doors impedes as surely as steps.

I'm not going to quote Burrell's entire article -- read it yourself. The site appears to me to be fairly accessible.

Still, I can't resist quoting one paragraph more:

A fellow at the mall was riding his wheelchair in the middle of the lot last weekend because there was no lip in the curbing where he could get out of traffic. Handicapped spaces are often far away from the doors, the curbs are cut in an inconvenient spot down the walkway, or the lip in the curbing is at an odd angle to the door.

I wonder if Burrell is aware of the numbers of wheelchair users who have been injured or killed by having to ride in the street due to lack of curb cuts -- the nationwide problem that's never been the focus of any national news coverage?

In yesterday's blog entry, I wondered if the "aging of the baby boom" -- noted in Ragged Edge a few months ago by Frank Bowe -- was starting, here in the new year, to change the way reporters and editors saw these kinds of stories. Now I find myself with more evidence: At the end of her article, Burrell writes, "With 71.5 percent Baby Boomers being over the age of 65 by the year 2030, it seems to me it would be well worth it in a consumer-driven society to keep those wheels rolling -- as barrier free as possible."

Maybe it is starting to happen. The realizations, I mean.

Burrell's revelations remind me of a similar "day in a wheelchair" article written a number of years ago by another journalist: Reporter Lilla Zuill of the Bermuda Sun spent less than a day in a wheelchair in March, 2001, to find out how accessible facilities were around the city of Hamilton. Here's how her article began:

"I DON'T have any out there, this morning, honey." That was the response when I called the BIU taxi dispatch, looking for a taxi that could accommodate a wheelchair.

I had been in the wheelchair for just five minutes, and already I had a taste of what it must be like to be confined to one. Perhaps, I thought, disabled people are penalized more by the inadequacy of facilities in Bermuda, than by their physical limitations.

Zuill's day is just beginning. If she were truly in a chair, she'd have not ever gotten to town; she had to give up finally and take her own car, as she could find no accessible transportation at all. Stores had steps; heavy doors; she couldn't get in... and on and on...

Zuill's article remains for me one of the classics -- the kind of article reporters should be writing. Read her entire article here.

Over at the Ragged Edge website, we've just started what Cal Montgomery has named "Project Cleigh." Cal's going to collect stories -- if you will email them to her -- about incidents like this that happen to you. She says people encounter them so routinely, every hour or so, that it gets exhausting trying to recount them. And she's not just talking about access issues -- she's also talking about the people who treat you as though you're asking a favor to be out and about; who ignore you, or who insist on helping when you don't need it, or...

The interesting thing to me about all this at the moment, the thing I keep focusing on, is how prevalent it is. It's encountered constantly. If you think crips who say this are just whining, I refer you to Burrell and Zuill.

Posted by mjohnson at 11:35 AM | Comments (1)

January 05, 2006

Take that, Clark Critics! Maybe The Boomers Are Reacting.

Perhaps Dick Clark unleashed a floodgate. His appearance New Year's Eve started the tongues wagging and they haven't stopped. On Ragged Edge Online's MediaCircusBlog, blogger Lawrence Carter-Long takes a long hard look at the varieties of the prejudice that spilled forth from our nation's media celebs and pundits at seeing stroke survivor Clark looking "old" and -- gasp! -- slurring words.

But something interesting happened. People noticed the media folks dissing Clark -- and a lot of folks didn't like it. Not just us rabble-rousing crip activists who are always yelling about this stuff. Regular folks, evidently.

Maybe it's happening. Maybe the stuff Frank Bowe speculated would happen (read his Disability Meets The Boom article) is starting to happen.

UPI Health Correspondent Alex Cukan wrote an unusually hard-hitting column this week:

The fact that Clark recovered from a stroke, can communicate and go on network television should have been acclaimed as a stunning achievement -- because that's what it was. Being able to communicate was a big deal and Clark, knowing he wasn't perfect, was courageous to make the effort when he could have sat home eating popcorn....

"His stroke -- which cost him his timing, as well as his impeccable television elocution -- seemed especially sad," said the New York Times.

That's what it comes down to -- the disabled make some feel sad and uncomfortable. I suggest we get over it and start treating people, no matter how imperfect, with dignity and respect -- because 70 million baby boomers are only going to get older.

"It's ironic that some criticize Clark for slurred speech on a night that has been traditionally associated with an overindulgence of alcohol," she continued.

In 1976 I covered the campaign of Daniel Patrick Moynihan, who spoke at a rally and was clearly drunk, and yet there was no murmuring in the crowd or no whispering that he might have had a few too many. Everyone in the crowd and the media seemed to ignore that he could hardly stand or walk without assistance. They treated him like the senator he became; in fact, no one seemed uncomfortable.

Isn't it interesting that people can ignore slurred speech and unsteady movement -- if they want to?

Unusually hard-hitting.

Maybe her tone was due to, as she said, her recent two columns on "Clay Aiken and his efforts to help remove the stigma of disabilities," as she put it (here and here).

Cukan's recent columns have been headlined "Caregiving." Go figure. Google News tells me Cukan's Dick Clark column appeared in at least 300 different places, including major newspapers.

Maybe baby boomers -- those folks who brought us all the Sixties activism -- are actually going to notice when they start being dissed. Maybe they are. Lookee here:

"Super Bowl Wants Only Young Dancers," read the headline in the Associated Press story I ran across yesterday. (Here it is with another headline in the Chicago Sun-Times.)

Mick Jagger and his bandmates may be nearing senior citizenship, but Super Bowl planners only want people 45 and younger to take the field during the Rolling Stones' halftime show....

The NFL says the reason for the age cutoff is that the job is physically challenging. Volunteers must enter and exit the field quickly and be on their feet for long periods. They will not have seats and will wait in a tunnel under Ford Field for most of the first half.

Sounds like age discrimination, for sure, putting that age limit in there like that -- and maybe it will turn out to be disability discrimination as well. The two will start overlapping more and more, I think.

Wonder if we'll be hearing more about this one?

Posted by mjohnson at 04:07 PM | Comments (2)

January 02, 2006

Missing something, Carson?

Carson Kressley, fashion guru on Bravo's "Queer Eye for the Straight Guy," is the author of a new picture book for kids, just out from publishing behemoth Simon & Schuster. You're Different and That's Super is about.... well, let's hear from Carson himself:

"This is for anyone who is skinny, fat, black, white, gay, or straight -- anything that wreaks havoc with self-esteem," Kressley says. "Sometimes kids have parents they can talk to, sometimes not. I want kids to know they're not alone."

Now I know Carson meant disabled kids, too: he just forgot to mention them. Right?

But that "forgetting to mention them" happens a lot in lists. Wonder if that could affect anyone's self-esteem?

Wonder if they're in the book or not?

The story's been in lots of media. Here it is on The Advocate's website: New book and TV show for kids celebrate diversity.

Posted by mjohnson at 11:25 AM | Comments (1)