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March 31, 2006

Terri and Haleigh

A year ago today, Terri Schiavo died, having been disconnected from the feeding tube that had kept the woman alive for years. By that time, of course, the bizarre media circus that had engulfed the country for weeks on end was no longer really about Terri Schiavo at all -- if, indeed, it ever had been.

Today marks the anniversary of her death, and the same media would now have it -- over 200 stories strong -- that the "message" or "legacy" of Terri Schiavo is "get a living will." Nothing more. Certainly nothing about disability rights. Despite activists' efforts this time last year. Not a blip of that effort seems to have enlightened anyone.

Late last week, the Massachusetts commission that had been hastily appointed in the wake of the Haleigh Poutre fiasco weighed in: they found mistakes had been made by state agencies and medical professionals. Geez, really? Their rather weak condemnation (yeah; I'd written "limp" condemnation -- me, of all people! -- but Evonne caught it) was restated by MA Gov. Mitt Romney: "Errors in human judgment occur." Oh, OK. The commission's report "isn't as comprehensive as it should be, but running through its recommendations is the message that the state needs to marshal medical expertise to help the Department of Social Services protect children from abuse," says the Boston Globe. Well, yes.

Haleigh Poutre was on the road to Terri Schiavo's fate when she -- gasp! -- woke up.

On March 23, the Associated Press reported that the reason Massachusetts' child welfare agency chief didn't bother to tell the state Supreme Court -- which was weighing removing her life support -- that Poutre might be getting better was "because doctors convinced him she would never recover from a vegetative state."

Department of Social Services Commissioner Harry Spence has been criticized for moving too quickly to try ending Haleigh Poutre's life support.

Spence said Haleigh was showing signs of responsiveness about a week before the Supreme Judicial Court granted permission to remove her life support. But he said Haleigh's doctors said her movements were not a sign she would recover....

"They absolutely affirmed that the chances of her recovery were absolutely zero. There was nothing for us to report to the [state Supreme Court]. There was nothing that had changed."

Only eight days after Haleigh was hospitalized, the MA Social Services Dept. sought permission from a Juvenile Court judge to remove her life support. "It was a quick move because the doctors believed that intrusive care was both inhumane and useless," Spence told the Associated Press's Adam Gorlick.

Dr. Loring Flint, Baystate's senior vice president for medical affairs, would not comment to Gorlick on the case. He cited federal privacy laws: "We cannot and will never comment publicly on the medical treatment received by patients at Baystate Medical Center."

There's been little major media about Poutre outside of Massachusetts, although some of the story has been on CNN and in the Washington Post. The New York Times has done no coverage at all since Haleigh awakened from her coma. (The blogosphere is another story.) An easy judgement would be to say that editors sought to avoid what was criticized as overkill (funny word, that) with Schiavo coverage. More troubling is the possibility that editors felt that any kind of focus on the Poutre reawakening would have "played into the hands of the right-to-lifers." The Boston Herald has pretty consistently been screaming about this case, but then again, the Herald is seen as a rag. The "respectable" media, I think, were so thoroughly embarrassed by even their own Schiavo coverage that they've vowed "never again."

Discussing the public media means, by extension, discussing public response -- the public hasn't gotten all that wound up about Poutre because mostly it hasn't known about Poutre. And I think part of it also has to do with the fact that she did wake up again. Focusing on that would, you know, sort of give credence to all the folks by now labeled as loonies who this time last year kept saying that the concept of a "vegetative state" is vague and in effect means nothing.

But enough already with discussing the public media, and the public. Let's discuss the disability rights movement.

No one would say that disability rights leaders and activists failed to speak out about Terri Schiavo. The opposite is the case. And that effort -- amazingly well executed in terms of sheer activism although perhaps not in terms of media savvy -- may now have backfired. Many in the movement were upset about the movement's public stance, believing it simply cemented in peoples' minds the erroneous connection between disability rights and right-wing causes.

So is seems that this time we were simply gun-shy. Not Dead Yet sent around a press release on Haleigh Poutre, but that was about it.

"Haleigh Poutre's case -- unlike the Schiavo case, where there were some ambiguities, was really made for us," Lisa Blumberg tells me. " It could have been our wedge case." She wonders why activists didn't run with it.

It seems it was almost a perfect case for proving how wrong doctors can be, how easily the "take her off life support" decision is often made. And this time the facts were precisely those that groups like Not Dead Yet could use to make the points the disability rights movement says it wants to make.

Why didn't it happen? I asked this question earlier, too. It was partly burnout, I think; but more than that -- activists were, simply, busy with other stuff. The ADAPT Nashville action was in the works. People had various medical crises, and for others, chronic pain kept them from acting. Those are the sad but true facts of organizing within the disability community. Nobody, it seems, had the energy this time.

Steve Drake of Not Dead Yet has a good statement he frequently trots out: That disabled people are simply "collateral damage" in the broader culture-war fight. That certainly seems to be true with Haleigh Poutre, whom the Rightie blogs have championed. Leftie bloggers then fight the Righties. The battle is then over the same old right-left insults, the issue forgotten altogether.

History has to be lived forwards but can only be understood backwards. Is that how you say that? In hindsight it seems clear that Haleigh Poutre's case, not Terri Schiavo's, was the one the movement should have used to light a fire under this country. But we got burned on the Schiavo case, and I think movement folks are still finding it almost impossible to dig out from under the ashes.

Posted by mjohnson at 10:07 AM | Comments (7)

March 29, 2006

Morgan Spurlock's Apology

Morgan Spurlock's exercise in free speech last week seems discouragingly similar in feel to the nastiness emanating from Tara McAvoy's death, which we wrote about in yesterday's World-O-Blogs entry.

The filmmaker who ate nothing but McDonald's meals for a month for his Oscar-nominated film "Super Size Me" gave what the Associated Press called "a profanity-laced, politically incorrect speech" at suburban Philadelphia's Hatboro-Horsham High School last week.

Spurlock joked about the intelligence of McDonald's employees, about "retarded kids in the back wearing helmets" ... The special education students in the back row were led by teachers out of the hourlong presentation. ( Read article.)

Hundreds of news outlets picked up the story -- and the subsequent one, in which he -- you guessed it -- apologized. Lot of that going around.

Initially he'd told reporters "he's never had a complaint after giving similar talks at other high schools and colleges." That's easy for him to say. Who's to know? His apology, it seems clear, was motivated by pressure more than any real change of heart.

The similarity to the Tara McAvoy fallout is found in the initial AP story:

Most of the 700 students laughed, gave him a standing ovation and mobbed him for autographs....

"The greatest lesson those kids learned today was the importance of free speech," Spurlock said.

Free speech is a good thing. It's also common shibboleth that rolls off the tongues of an awful lot of boorish reprobates, bullies who hide behind its high-toned meaning to cover up their own stunning lack of character.

I daresay this sophomoric stuff isn't what the Founding Father's had in mind. Nonetheless, I'm not advocating censorship. What I advocate is more free speech.

I think. Now, though, we get commentators who use words like "idiot" to castigate Spurlock for calling folks "retards."...

Posted by mjohnson at 09:14 AM | Comments (1)

March 24, 2006

Gone Blind

What do we have to look foward to this coming May? Publication of a book with the wonderful title A Nation Gone Blind.

Subtitled "America in an Age of Simplification and Deceit," author Eric Larsen's publisher, Shoemaker & Hoard, says this about the book:

novelist, critic, and teacher Eric Larsen describes an increasingly desperate situation. America’s citizens are plagued by despair and frustration....A blindness has set in, he argues, producing writers no longer able to write, professors more harmful than helpful...

And, although neither he nor his publisher seems to realize it, America's citizens are plagued with something else as well: an unthinking use of metaphor -- using "blindness" to mean "bad."

There's no other reason the word "blind" is in the title, or in the book: It's there simply and solely to signify "bad."

Why oh why doesn't this bother us? Why don't we speak out about it? I really don't understand it. And yes, I am on my soapbox again.

By the way, the words "Gone Blind" are in much larger type than anything else on the book's cover. Take a look for yourself here.

Posted by mjohnson at 12:20 PM | Comments (4)

March 20, 2006

Cure TV

Nearly three decades of disability rights activism, and ABC Television still sees nothing wrong with producing a TV series like Miracle Workers, which can only be described as a new low in reality shows.

PopMatters' Associate Film and TV Editor Todd Ramlow does as good a job of laying out the show's premise as I've found:

[T]he over-sentimentalization and pitying protocols of dominant culture towards disability frame the show. Each episode focuses on two "tragic" victims of various disabilities and the doctors who will "cure" them. The narrative structure is predictably manipulative: each person's disability, difficulties, and family are introduced. We meet the medical team, and hear about their "ground-breaking" procedure. We are shown the patient's apprehensions, some complications during surgery, and the emergence of an altered individual at the end.

The first two episodes featured Todd, "blind since childhood due to an allergic reaction to penicillin"; Vanessa, "who suffers from degenerative bone and joint disease"; Emily, a 19-year-old "with a severe form of Tourette Syndrome"; and Adrian, a toddler with Vater's Syndrome (born with five fused ribs on one side, which radically changed the shape of his spine). Through the "miracles" of modern medicine, Todd has stem cells and full corneal transplants that return his sight (though to what degree is never mentioned), Vanessa's spine is fused so she can move without chronic pain, Emily receives Deep Brain Stimulation treatment, and Adrian has an expandable titanium prosthesis attached to opposite top and lower ribs, which will afford the little boy "the chance to stand tall." It's not so much that the medical treatments for these disabilities are a problem, especially in the case of Vanessa, who experiences chronic pain. Certainly, helping individuals to live without ongoing and intense pain is a good thing. Rather, the problem has to do with the able-bodied presumptions that underlie Miracle Workers. Todd, for instance, is perfectly "normal" in every respect except one. He is married, has several children, and a full time job as a nurse's assistant. His "tragedy" is that he has never seen his wife or children. (Read Ramlow's article.)

I'm sorry to say the show's premise doesn't surprise me one bit. I think it's only to be expected in a culture that adulated Christopher Reeve, that couldn't see that his "walking by 50" cure-or-bust mantra was the opposite of disabiilty pride. A culture that still doesn't seem to have a clue that the quest for cure isn't the end-all of every disabled person's life.

There's plenty of blame to go around. Sure, blame the mass culture and the media. They deserve it.

But blame disability rights movement activists, too. We simply haven't made it clear enough that the problem is not "broken bodies" but broken policies and broken laws. That the problem is a denial of rights. We don't stay on message. We don't raise hell enough. We don't write enough letters to editors. We don't blog enough. We don't write enough op-eds.

Chicago ADAPT activist and freelancer Mike Ervin did an op-ed for the Progressive Media Project that so far -- as of the time I write this blog entry -- has been picked up by the Tallahassee Democrat and the Myrtle Beach Sun News Irvin calls the show "insulting to people with disabilities," but predicts it "will become a feel-good hit" -- simply because it "reinforces the comforting myth that if people with disabilities are on the fringes, it is up to us alone to try to fit in better by seizing every opportunity to change who we are. It relieves everyone else of the daunting obligation of doing the hard work of creating a culture that is more welcoming and just."

Ervin's op-ed is going to need to be picked up by more than a few papers if it's to make a real dent in consciousness.

In the kind of everybody-gets-linked-to-everybody-else villaging that is the blogosphere, John E. Smith wrote of precisely this thing in the Washington Post back in January. It's a Life, Not a Feel-Good Moment, he said, referring to media's penchant to turn a disabled person's reality into what might less charitably called news entertainment. (Earlier today Smith posted a comment on our MediaCircusBlog entry by Lawrence Carter-Long: he wants us to let him know if he got it right. Yes, he did. Exactly.)

Smith was referring to feature stories about his son, a wheelchair user who goes rock-climbing and kayaking, among other sports. Now we've got an entire reality show to contend with.

Ramlow also gets it exactly right when he writes,

Disability, then, is the individual's problem. The "cure" is out there, Miracle Workers suggests, and if you, person with disabilities, can't "overcome," "we" can't be bothered.

For confirmation of this we need look no further than California's North County Times, a San-Diego area online paper that's been carping about access for months now, carrying on an ongoing diatribe against crips who file lawsuits to gain access to inaccessible businesses. No matter that it is the businesses who have been breaking both federal and state law in refusing to modify their premises; the ongoing story line is that the problems are all being caused by the crips. A recent installment has William Louis complaining that wheelchair users are using the wrong kinds of wheelchairs. It's their own fault, in other words.

This kind of thinking is really all around us today. So Miracle Workers isn't all that surprising. It's an artifact of our reactionary times, a climate that no longer believes in re-making society along egalitarian lines -- not when we can get individuals to have themselves remade in our own likeness. Which is a lot of what "cure" is all about. Not all of it, but a lot of it.

And even those who rebel at the idea of other minorities remaking themselves to fit into society don't seem to "get it" when the "minority" is someone disabled. Even a feminist, we learn, can be a Step Nazi.

The bottom line? People love this kind of cure stuff. And there are millions of disabled folks out there who want to be cured, too. The disability rights sensibility just hasn't permeated very far into folks' consciousnesses. The Louisville Courier-Journal's TV critic likely got it right when he wrote that the show is "sure to bring a flood of mail from people pleading for the Miracle Workers team to take their cases." ABC told reporters that the show would "help people." But producers, wisely hedging their bets, were also sure to tell reporters that even if the show got lousy ratings, it would still be "helping people." Disabled people, after all, need "help." That's the conventional wisdom. And people who rain on that parade are seen as mean-spirited. But Miracle Workers seems headed for the basement in the ratings department nonetheless. Not, I'll wager, for the right reason, though.

I wonder what would happen if ABC decided to do a reality show on getting businesses to make themselves accessible? There could be on-air fighting and screaming as small business owners denounce wheelchair crips. The crips could file suit. Then we could have live courtroom drama, too...

Posted by mjohnson at 02:57 PM | Comments (5)

March 14, 2006

Attitudes? Discrimination!

An article published last Thursday on the New Standard news site last week has been sent to Ragged Edge by lots of folks with lots of agendas. New Standard's site says it's been their most-emailed article for awhile now.

In the article, Attitude, Not Cost, Barrier to Disabled Workers, reporter Catherine Komp quotes a number of disability regulars, including the American Association of People with Disabilities' Andy Imparato:

"Most disabled people would tell you that the bigger concerns they have around the workplace are not around physical accessibility," said Andrew Imparato, president of the American Association of People with Disabilities. "They’re more around attitudes. I think it’s easier to legislate and see change around bricks and mortar than it is around attitudes."

Well, uh, that may be true as it goes. But there's more to it.

We've heard from a number of folks irritated that spokespeople like Imparato always sing the praises of jobs jobs jobs as a panacea -- our emailers point out that not everybody with a disability actually can hold down a fulltime job, accommodation or no. Instead of suggesting that every disabled person can and should work, shouldn't disability spokespeople be trying to get society to understand that even a person who cannot work has a right to dignity and access?

A fair point, and one that doesn't get aired anywhere near enough.

Then there's this other side, which I think Komp's article tries to get at, with only middlng success: There's a heck of a lot of discrimination around. "Attitudes" has always struck me as a kind of Casper Milquetoast way of saying "discrimination." You know, prejudice. Bigotry.

Mean-spiritedness. Just don't want to hire disabled people because they just don't want to hire them. And they're going to find some way of avoiding hiring them, law or no law.

A long-accepted mantra from the civil rights movement tells us that while change in attitude can't be legislated, you can force behavior change through legislation -- if it's enforced. Civil rights activists back in the day knew that you couldn't change a white bigot's attitude -- racism, it was called, not "attitudinal barriers" -- but you could force the white bigot to let you sit at his lunch counter. Or ride at the front of his bus. Or go to his school alongside his lily-white kids. You could change behavior. The belief was that once behavior changed, attitude change might possibly follow.

That it didn't happen the other way around.

We seem to forget that a lot in the disability rights movement.

The article by Harlan Hahn which has just been posted on Ragged Edge reminds us that employers will try all sorts of things to get rid of disabled employees -- employers in this case being universities. And speaking of universities, as if we needed a reminder that they might not be all that keen about accommodating their disabled -- faculty or students -- Monday's Washington Post brings us the story of the suicidal teen whom Georget Washington University tried to get rid of lest he cause them problems:

For an excellent lesson in how not to respond to serious depression, consider George Washington University's handling of the case of former student Jordan Nott.

Mr. Nott, then a sophomore, checked himself into the hospital one night in 2004, saying he was considering suicide. Within days, as Post staff writer Susan Kinzie reports, the university informed him that he faced charges of "endangering behavior," which violated student rules and could lead to his suspension or even expulsion. In addition, pending adjudication of the "charges," the university notified him that he had been suspended on an interim basis. . . .

Here's the whole story from The Post. George Washington University's student paper has also covered it. (interesting stuff from the student reporter here as well). Read Hahn's article about "risk management" and "moral hazard," then read this, and see if you don't see sort of a pattern.

And good for the Washington Post for this editorial saying it like it is.

Posted by mjohnson at 07:12 AM | Comments (6)

March 08, 2006

"New" and "special" in Utah

What's "new"? That's the question a federal appeals court is taking up this week. The 10th Circuit Court of Appeals will decide the case filed by longtime disablity rights activist Barb Toomer in Salt Lake City against local cab companies for refusing to purchase wheelchair-accessible vehicles.

According to the three cab companies, "new" means just that -- a complelely "new" vehicle. Most of the cab companies purchase used vehicles, and, those, they argue, they aren't required under the Americans with Disabilities Act to be accessible. They aren't "new," you see.

Toomer's group, the Disabled Rights Action Committee, sees it differently.

The Americans with Disabilities Act, they say, requires cab companies to provide lift or ramp devices with every van they acquire for their fleet. "New," says DRAC, means "newly acquired" by the cab company. In other words, "new" to them.

"The issue comes down to the meaning of the word 'new,' " DRAC attorney Rick Armknecht said. "It's amazing that it comes down to that. Whether wheelchair users have access to taxi cabs will depend on the court's interpretation of 'new.' "

In another sense, though, the case is not so much about the word "new" -- angels-on-the-head-of-a-pin stuff -- as it is about the old bugaboo segregation. Oops, I mean "special." In fact, this appeal showcases that issue quite nicely.

To hear the cab companies tell it, they've done their bit by offering a "special" service, after a city ordinance required they do something.

From the Associated Press:

Since the filing of the taxi case, Salt Lake City enacted an ordinance requiring taxis to accommodate people in wheelchairs. That's when the three licensed cab companies arranged for the service to be provided by Gold Cross Services Inc., which takes calls for three specially equipped vans.

"We each donated a meter [a vehicle]," said Bruce Jackson, an owner with his brother of City Cab Co. ... (read story from Utah's Daily Herald newspaper.)

Jackson told reporters he figured that should settle things. "I don't see what the point is," he said, when told Toomer's group had filed an appeal when a lower court agreed with the cab companies that providing a special service was an adequate -- and legal -- solution.

From the Associated Press story, you get a flavor of how cases like these get framed publicly:

Cab drivers in Salt Lake City often refuse to pick up people in wheelchairs, who get referred by dispatchers to a private ambulance company, which has agreed to provide the service for no more than regular cab fare.

But advocates for the disabled want to force taxi companies to outfit vans that usually are part of their fleets with lifts or ramps and provide their own service. . ...

Posted by mjohnson at 06:48 AM | Comments (3)

March 06, 2006

LifeCare, lifeboats, murder -- and the Carlyle Group

The latest transgression to be laid at the door of the Carlyle Group? Hurricane Katrina murders.

Near the end of a news story Friday reporting that former LifeCare exec Donald Boucher will plead guilty to making $50,000 in illegal corporate campaign contributions, we find this:

LifeCare was acquired last summer by the Carlyle Group.

Twenty-four patients died at a LifeCare facility on the grounds of a Tenet Healthcare Corp. hospital in New Orleans that was cut off by floodwaters from Hurricane Katrina.

That's a discreet way of putting it. In fact, they were murdered. "The 'evacuation plan'," according to NPR on 2/16, "was to not leave any living patients behind." NPR reported that administrators "saw a doctor filling syringes with painkillers and heard plans to give patients lethal doses."

You know the Carlyle Group, right? You should if you watched Michael Moore's Fahreheit 9/11: "The Bin Laden and Bush families were both connected to the Carlyle Group, as were many of the Bush family’s friends and associates," Moore told us.

The British Journal the Economist reports that "among its partners are former secretary of state James A. Baker III, former defense secretary Frank C. Carlucci and former White House budget chief Richard Darman" ("secretive Carlyle Group gives capitalism a bad name"), adding that the group "also retains former president Bush as a top adviser...."

From Michael Moore again: "The Carlyle group is a multinational conglomerate that invests in heavily government-regulated industries like telecommunications, healthcare and, particularly, defense." ( You can see more of the background on the group that Moore used at his Fahrenheit 9/11 background website.)

Since last summer, LifeCare has been part of that mix.

"LifeCare": now there's a misnomer if I ever heard one. It goes way way beyond irony. It operates 21 hospitals including Memorial Medical Center in New Orleans where the folks were murdered. The Times Picayune described Memorial as a "long-term acute-care center" -- which I take to be a hybrid beween a hosital and a nursing home.

When, in its Feb. 16 report, NPR offered proof that officials there had killed patients they couldn't evacuate in the wake of Hurricane Katrina, I waited for the public outrage, the outrage that I was sure would come over what happened at LifeCare: murder, OKd by officials against helpless hurricane victims.

But the outrage didn't come. By now, much of the Katrina outrage has been simply used up, it seems.

Now that we know that LifeCare is part of the hated-by-us-lefties Carlyle Group, will the outrage revive?

Probably not. Even NPR, which reported the culpability of LifeCare administrators, called them "mercy killings."

So it's OK, the term seems to say.

Nobody seems to see how ridiculous that term "mercy killing" is. How it excuses officials, who should have heeded warnings to evacuate. Culpability rises to the highest corporate and government levels in our nation, now that it's clear federal officials -- and Bush -- knew of the danger to New Orleans days before levees broke.

Not Dead Yet's statement gets it right: "This was not about compassion or mercy. It was about throwing someone else over the side of the lifeboat in order to save themselves."

"So far the focus has been on the failures and abandonments of the poor, old and disabled by the government at local, state and national levels," Not Dead Yet's Steve Drake tells me. "But perhaps we need to look at corporate abandonment of these same people."

Right. And let's call it what it is: murder.

Posted by mjohnson at 10:32 AM | Comments (8)

March 03, 2006

Apologies all around

There's been a rash of news stories about people asking for apologies, people offering apologies, people saying apologies aren't enough. What is it with all the apologizing?

On Tuesday, Ragged Edge posted a story from Dave Reynolds' Inclusion Daily about San Diegan Joany Schlender wanting bowling alley staffers to apologize for their treatment of her daughter.

"Parkway Bowl manager Bill Rossman later told a reporter that his employees are sorry Tiffani did not get to bowl that day," Reynolds writes.

In that same edition of Inclusion Daily, Reynolds had another story that featured an apology. In this one, Charleston, SC Municipal Court Judge George Epps apologizes for remarks he's made earlier -- in court -- about a man's service dog. The man, Bob Godfrey, didn't accept the apology, though. (Here are two stories about the incident: "Judge apologizes for comments about dog in court" (Associated Press via Myrtle Beach Sun) and "Dander still up over dog" (Post and Courier))

The next day's Inclusion Daily also featured an apology story: An 11-year-old boy with CP in Wales has demanded an apology from police -- he says officers made him get off his motorized scooter to prove he couldn't walk and actually needed the scooter. (For more on this apology, read "Police 'made disabled boy walk'" (BBC News)

On Monday, we'd also posted an Inclusion Daily news story that featured an apology -- this one about DC's messed up paratransit system: "Last Thursday, Metro board Chair Gladys W. Mack publicly apologized for the poor service, and said that an ad hoc panel would be appointed to hear directly from riders," wrote Reynolds, who went on to report that Harold Snider, who heads the Montgomery County Commission for People With Disabilities, suggested that what was needed was better service, not an apology.

I suppose it's good to see that folks are at least apologizing for bad behavior. But I think Snider and Godfrey are onto something, frankly, and I'm glad to see it being reported. I think too often people, when caught and called on the carpet about discriminatory or bigoted treatment, think they need only apologize and everything will be fine. But an apology doesn't guarantee they'll change any of their behavior.

It seems to me that often the people apologized to are then prodded to accept the apology and go on, even if lasting change does not occur. I've certainly seen that many times in my own work with disability activists.

If the activist doesn't accept the apology; if the activist then insists that the behavior change, then they're labeled spoilsports.

I hope that doesn't happen with either Snider or Godfrey. Judge Epps should be held to account for his bigoted remarks. And it's way way past time for DC's paratransit system to be forced to obey the law.

Posted by mjohnson at 10:09 AM | Comments (3)