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May 31, 2006

The Latest "Duh!" Study

Today over on Ragged Edge we feature the latest "Duh!" Study I've run across, courtesy of Dave Reynolds of Inclusion Daily: Study: In-Home Worker Traits Could Increase Dementia Symptoms. "People with dementia seemed more paranoid, 'combatitive' when the in-home worker was young, poorly-educated," the researchers learned.

This qualifies as a "Duh!" Study because the reaction one has to reading about it is, "Well, duh!"

As in -- did we need a study to figure this one out?

As in -- shouldn't this just be common sense?

But no; researchers had to study 6,000 people with dementia who were living at home with their families or "caregivers." And what they learned -- but you should read the article yourself -- was that "that caregiver characteristics, including their emotional state, could contribute to neuropsychiatric (behavioral) symptoms in dementia patients."

Well, duh!

It seems to me a sad indication of the state of affairs that such a belief isn't simply accepted as a given, but has to be "studied" to confirm.

"The researchers found that younger caregivers reported significantly more behavior problems than older caregivers did, suggesting that caregiver age alone may affect a patient's symptoms."

This is an interesting point. One would likely have to poke around in the study itself to unravel some of it. Were there actually more "behavior problems?" Or was it that the younger "caregivers" made more of behaviors that to them seemed like "problems"? Did the paranoia and restlessness, the "wandering and combativeness" disturb them more than it did older workers looking after someone with dementia? Did the younger folks interpret as paranoia something that a worker closer to the "patient's" age might have not viewed as such? Were older workers, in other words, simply more sanguine about these things? Or did the younger folks exacerbate the behaviors?

All of this is possibly -- likely -- revealed in the discussion in the actual study, but it is, alas, not revealed in the press materials.

When you read the press release on the study, you might also be struck, as I was, by the number of times the researchers made the point that they were not "blaming the caregivers."

So, were they blaming the victims -- the people with the dementia (almost certainly most of them elderly, although the press release doesn't mention that)?

"We are not trying to blame caregivers, but to better understand the complex puzzle," one of the researchers said. "If we focus only on the patient, we're not going to solve the problem. We need to develop better, non-drug treatments to handle these behaviors, and more tailored caregiver education may be one answer."

When I read that statement, I thought to myself, "this is an odd way, almost an apologetic way, of going about things."

It's high time -- actually, way past time -- for a lot of problems in disabled person/worker relationships to be examined with an eye to whether much of it isn't caused by the worker. (Do you notice how I keep avoiding the word "caregiver"? More on that in a moment.) But the press statement, at least as I read it, seems to be replete with a kind of bending over backwards to be very careful making this point. The researchers are indeed to be commended for trying to start to shift the examination of the "problems" caused by things like Alzheimers, to shift it away from the "Alzheimer's patient" and onto other things that quite likely do, if not cause, surely exacerbate things like paranoia. Other things -- such as the way they're being treated, perhaps? By the folks "caring" for them? Geez, what a clever idea! (Sarcasm intentional.)

I'm curious about the political climate in which this study was done and released. Was there something going on that occasioned the phrasing of all of this in a way not to blame "caregivers?"

Maybe I'm reading too much into it. Maybe it was entirely unintentional. That to me says even more about our lockstep tendency to blame the victim and see the "caregiver" as blameless in so many cases. Particularly when the "caregivers" are family.

A Diversionary Rant

OK; enough pussyfooting: I loathe the term "caregiver" and go out of my way to find every opportunity to avoid using it. Or I try to change it. With varying success: some of my alternate locutions seem odd even to me.

The words "caregiver" and "caregiving" have become so accepted in our culture that nobody even thinks of whether it's the best or most accurate way to phrase things. Most people couldn't care less, I'm sure.

At one time way back in the Dark Ages of the disability rights movement (for you newbies, this means the late 1970s and early '80s) there were lots of crip activists who hated the term and the concept, too, and insisted on a new phrase: "attendant services" or "personal assistance services." The term grew wihin the burgeoning disability rights movement -- or the part of it we then termed the new "independent living" movement. But, alas, it appears now that it was much like the proverbial tree that fell in the forest: nobody heard it, so it didn't exist, as far as the "real world" was concerned.

Nearly three decades later, nobody much anymore beyond us diehards use the term "personal assistance services" -- nobody outside the core of the "independent living" movement even knows what it means. (Ditto, by the way, for "independent living": in a truly Alice-in-Wonderland move, the nursing home industry simply appropriated the term to mean congregational housing run by agencies like nursing homes. So much for "independent living.")

I'm almost done with my Diversionary Rant here. I'll be done completely as soon as I ask you to watch your local news media for the next reference to "independent living." If, perchance (but not likely), the reference is to an independent living center, the reporter will be compelled to identify what that creature is, since, still, it's assumed (correctly, no doubt) that nobody knows what one is.

End of Diversionary Rant.

To understand more of my ire against the term "caregiver," read my article The Care Juggernaut.

And don't even get me started on the use of the word "patient."

Posted by mjohnson at 09:37 AM | Comments (6)

May 26, 2006

I goofed on Luciano

Yesterday I praised Phil Luciano of the Peoria Journal Star for his column "'This was not about autism' -- a column in which the grandfather of the murdered 3-year-old Katie McCarron said in no uncertain words what he thought: "I am positively revolted when I read quotes that would imply any degree of understanding or hint at condoning the taking of my granddaughter's life."

"It is a tribute to Luciano that he did this column," I wrote.

This morning, Steve Drake, research analyst for Not Dead Yet, posted a comment: "Don't be too quick to bestow thanks and congratulations on Phil Luciano," he wrote. "Prior to publishing the piece that consisted mainly of the grandfather's statements, Luciano was the main voice leading the sympathy party for the mother. No doubt that is exactly why the grandfather called Luciano."

I should have done my homework. There's no excuse. Luciano's earlier articles were even listed alongside the one I praised: Case doesn't make sense (05/17/2006) followed with Helping everyone but herself (05/18/2006). His first one begins "To me, Karen McCarron sounded like a great mom" and goes on from there; we get more of the same in his next-day followup, the thrust of which you can figure out from the headline: Helping everyone but herself. Drake believes it was outrage over these columns that prompted grandfather McCarron to call Luciano to argue that 'This was not about autism'.

In this column, Luciano reports McCarron's words -- "I am positively revolted when I read quotes that would imply any degree of understanding or hint at condoning the taking of my granddaughter's life" -- but never once mentions that it is he, Luciano, who wrote the pieces that outraged McCarron. Luciano "never apologized for any of it," Drake said, "-- just put the grandfather's statements out without comment our endorsement."

And so I am left realizing that what I said in yesterday's entry -- about how scarce Michael McCarron's points are in media coverage -- is even truer than I realized.

I wonder if his viewpoint will ever get a broader audience?

Other stories about the case from the Peoria paper include:

Autism 'difficult for parents' (05/17/2006)

What is autism? (05/17/2006)

Support key for dealing with autism (05/18/2006)

Slaying is Morton's second in two decades (05/18/2006)

Police: Mom admits to killing (05/18/2006)

McCarron attorneys ask for reduced bond (05/19/2006)


Posted by mjohnson at 10:29 AM | Comments (12)

May 25, 2006

Are murders by fire and suffocation "national news material"?

Today many autism blogs have declared a day of memorial for Katie McCarron, killed by her mother -- suffocated, according to reports -- for the "crime" of being autistic.

And police have charged an Oregon couple of killing their 19 year old autistic son, Christopher DeGroot, locking him in the apartment last Friday, then setting fire to it.

It almost boggles the mind.

Yes, the killings do. But what I'm talking about is reaction. Public reaction.

(Almost always when I talk about things, I talk about public reaction, as I was doing on my last entry, about the racehorse Barbados's recovery.)

Ask yourself how much news there'd be if two such crimes, racially-motivated, had happened in quick succession?

Ask yourself what kinds of news headlines you'd be seeing on CNN and elsewhere had there been two killings by parents of gay children within weeks of each other?

And then ask yourself about the news you've gotten about these two killings.

There's not much. Local stories, all of them. No national news at all that I was able to find.

Perhaps it's too soon yet to hear reaction -- although had the killings been racially or gay related, you can bet your booties there'd be reaction already. Reaction within hours, in today's fast-moving media world.

When reaction to the autism killings does come in the national media -- if it does come -- it will be surprising if much of it does not take the form of looking into the problems the parents faced in having to deal with an autistic child.

Let me be clear here: This blog entry is not about whether parents of autistic offspring do or do not have adequate "supports." I am not discussing whether or not those charged with murder faced "stress." A case can no doubt be made that anyone who murders is in some way "stressed," right? But the focus generally isn't on supporting the murderer, is it?

I find it curious, to put it mildly, that national news media have not picked up on these stories. Perhaps they can't find any group to condemn the murders of autistic people. Could that be the case? Or are they not trying very hard?

I'm sad to say that I was suprised to see Peoria Journal-Star columnist Phil Luciano's article 'This was not about autism' -- sad that I found it unusual. The headline is a quote from Katie McCarron's grandfather.

It's unusual to find a piece like this, a piece that doesn't say it's "understandable" that the parent "broke"; "snapped"; "couldn't take it any more." For that is the usual way cases like this play out in the media. It is a tribute to Luciano that he did this column. (Update: Actually, as Steve Drake points out in his comment below, what I didn't know when I wrote this sentence was that Luciano himself wrote earlier columns doing the very thing I'm condemning. See my next post about that.)

It is a sign of how far yet we have to go that Luciano, so far, seems to have the field all to himself.

Posted by mjohnson at 03:33 PM | Comments (3)

May 23, 2006

The 'won't recover' issue

In April, I blogged off and on about the "amazing supercrip" stories the media was dishing out about Dan Hendricks, trainer of Derby hopeful Brother Derek.

But those stories have now found their match in the ones pouring forth now on Derby winner Barbaro's leg fracture that cost him the Preakness.

There's a lesson here somewhere, about the need for us humans to produce this kind of narrative about injury and recovery. It seems it's bred in the bone.

I ran into my first one in yesterday's Courier-Journal sports section. By sports columnist Jerry Brewer, its headline -- Biggest fight of Barbaro's life just beginning -- got me to thinking about how much "athlete injured, recovering" stories were alike. Whether the athlete was human or horse didn't much seem to matter. Brewer's story was so much like the tear-jerker stories I've read over the years (and criticized) that I had to sit there and read it all.

There are hundreds of these kinds of stories being done now -- check out the google news hits on 'Barbaro'. Here's a headline: "Barbaro's Tough Road to Recovery." That's from the San Francisco Chronicle. Here's another: "A Tribute to a Champion." That's from the Boston Herald.

Some more: "Barbaro's Plight Stirs Deep Emotions" (San Jose Mercury News).

But here's the story to read:

ABC News: Barbaro's Injury Provokes Deep Empathy, but Why? And, if you're registered with the New York Times (it's free), take a look at Jane Schwartz's essay in yesterday's sports section -- We Care. But Why Do We Care So Much?. "Why do people care so much about the fate of an animal to which they have no personal connection?" she asks. Three people posed answers in today's NYT Letters Dept.

I'm not sure that these "why do we care" articles really get at all of the reason stories like this continue. Yes, partly it's about a horse that's a champion, but it's more about the interest -- fascination, I guess -- with recovery against the odds. Or what we think are the odds.

It's certainly a deep, atavistic emotion.

Not that there's anything wrong with it, as far as it goes.It's just that it often -- almost always -- goes too far.

The problem for people who live as disabled has always been that society has never seemed to know when to shut off the waterworks and get down to the business of letting someone who won't recover get about in society nonetheless.

That "won't recover" issue is the one that bothers folks. It's the one that's most often used to justify assisting in a "suicide." Turning off a breathing tube. Withdrawing food and water.

Or, even when not taken to such an extreme, the "won't recover" worry brings us language in articles of the "trapped in a lifeless body" or "future is behind him" variety. You know the ones. The ones that fixate on the moment of disablement and never seem to examine the access and discrimination problems individuals who "won't recover" continue to face.

That seems to be what society has so much trouble with. Any ideas as to why that is?

Posted by mjohnson at 09:27 AM | Comments (7)

May 18, 2006

"Deaf Ears" Dept.

Continuing the never-ending reporting on cluelessness:

So folks with albinism are upset about the way albinos get a bad rap in the blockbuster Da Vinci Code -- an AP story out yesterday and a piece on our site today by Andrew Leibs.

Fair enough. But in the AP story, we have this:

McGowan [Michael McGowan, an albino who heads the National Organization for Albinism] said his group asked Imagine Entertainment not to bleach Silas's hair or make his eyes red, but "that fell on deaf ears."


So crips can say "blind leading the blind" and blind folks can say "a lame excuse" and deaf folks can say "he's a retard" and people with albinism can say their requests "fell on deaf ears."

Ok. . . .

Posted by mjohnson at 07:31 AM | Comments (4)

May 12, 2006

The story they've all been waiting for

Do a Google News search on "Laura Lee Medley" and you get 2 hits -- but there are over 200 separate news outlets running those 2 stories. And that's just today. The number will multiply -- count on it. And we haven't even mentioned the blogosphere, which is having a field day with the story and will probably continue for some days to come.

Yes, Medley's the woman whose story of rising from her wheelchair and running from police after being arrested on a suing-for-injury scam is, even as you read this, settling into its permanent slot in the News Of the Weird Hall of Fame.

There are so many layers to this particular blip on the media radar screen that one blog entry's just not going to do justice to them all.

So let's just start with the lede and go on from there.

The lede to the much-republished AP short begins thus:

A paraplegic who repeatedly filed claims and lawsuits for noncompliance with the Americans with Disabilities Act. . .

There, in that first line, is the fodder that feeds theurban legend about disabled people. You know the one: Disabled people file access lawsuits not for any legitimate reasons but simply to make money.

California media outlets have been in the forefront of promoting this legend (See stories here and here.)

The Medley howler is about as good a piece of evidence as we're likely to run into that this spin on things has pretty much morphed into conventional wisdom. After all, even Laura Lee Medley figured it out. She figured out -- and it's not unlikely she did so from all the news stories about "serial suers" -- that she could make money suing over access.

Except the news stories about that particular urban legend are, of course, distorted, and often simply inaccurate.

And except Medley didn't really sue over access -- she really sued over injuries sustained by inaccessible curbs.

To find that out, though, you have to go back through the coverage, to find the news story that started it all.

That was from the Pasadena Star News:

Medley says in the Long Beach claim that on Sept. 3 she was forced to drive her wheelchair on the street because of an inaccessible sidewalk.

Due to an inadequately maintained street, the wheelchair toppled, the claim filed Sept. 19 said. Medley said she broke her right arm, costing her $5,200 in damages.

Belinda Mayes, deputy city attorney for Long Beach, said the claim was denied because the sidewalk is accessible in the area in question. (Read original story.)

Which is different.

Yes, in Medley's case, the entire thing seems to have been a scam. There were no injuries. There was no doctor. The hospital papers documenting her injury were fake. Her crime can be filed under "perpetrating a fraud"

But unfortunately this story won't stick in people's minds for that reason.

It will stick because it feeds into those two common beliefs most of the public holds:

And the reason the public holds those beliefs has to do with the way this story has been reported again and again.

This second point is particularly interesting when it's leveled against people who file suits in states in which there are no damages payments provided for access violations. And the federal Americans with Disabilities Act doesn't allow for damages. (In California, where Medley ran her scam, state law does allow for payment of monetary damages.)

But you almost never see that in any news story about people who file lawsuits over access under the Americans with Disabilities Act -- which, as you remember, is the fact that erroneously led the stories being circulated about Medley.

In fact, the vast majority of disabled people are scared to file lawsuits for legitimate reasons -- and press coverage is one of the reasons they're scared.

OK, let's go down another layer, in another direction: Had Medley truly been injured -- had the injuries been real -- would her case therefore have merit?

Continue down this path with me for a minute: Suppose if Medley didn't "need" a wheelchair, but was in one nonetheless. Suppose that

...she was forced to drive her wheelchair on the street because of an inaccessible sidewalk [and]

Due to an inadequately maintained street, the wheelchair toppled . . . [and] she broke her right arm, costing her $5,200 ...

We get here into the sticky sticky area of disability law, in which, unlike much other civil rights law, the burden is on the disabled person to prove they are really disabled and thus really truly have a right to use civil rights laws.

When we consider the numbers of people injured, even killed, because they must travel in the streets because cities have failed to install curb cuts, so they can't get up onto the curbs and are forced to travel in the street (see stories here and here and here) we can either condemn Medley for the grifter she apparently is, have a good laugh, and put the whole thing out of our minds -- or we can think about the deeper issue here, the one that's not getting any media play: what about all the people who really are disabled and use wheelchairs out of necessity, who have things like this happen to them?

Is it bad that they sue?

If you follow the California media coverage of access suits to any degree, you'll know that that's the prevailing story, virtually never countered by reporters finding disability rights groups making the point that the reason lawsuits get filed is because businesses and public agencies persist in illegally refusing to remove architectural barriers, despite state and federal law mandating that removal.

But this is not a discussion that the Laura Lee Medley anecdote is going to engender.

And you can bet your wheelchair cushion that no national disability group is going to bring it up, either.

On April 23, the Sunday edition of Columbia, SC's The State newspaper published a long story about Linda Van Deusen. "Woman files 31 lawsuits in 6 years," ran the headline.

A few sentences after the lede came the guts of the story:

[T]he Columbia woman, who uses a wheelchair, has filed 31 federal lawsuits in six years — turning a personal injury into a personal crusade for the rights of the disabled.

None of her lawsuits has gone to trial. Seventeen have been settled out of court. Fourteen are pending, including three lawsuits filed on the same day this month.

All the defendants who have settled agreed to make changes and pay Van Deusen’s attorney fees. In a few cases, they also paid small damages.

She says the cases have not made her rich.

Note that she was asked -- and reporter Adam Beam felt compelled to report fairly high up in the story -- whether filing the suits had "made her rich."

The conventional wisdom today about wheelchair users who file lawsuits for access is that they're lawsuit happy, in it only for the money, causing the business community untold hardship. You can find hundreds of news stories that follow this formula, mostly from California media outlets, many of whom label people like Van Deusen "serial suers." Van Deusen's story itself got picked up by over a dozen media outlets nationwide.

Such is the stigma and vitriol directed against wheelchair users who file suits that Van Deusen felt compelled to write an op-ed article defending herself after the article was published.

I always inform the manager on duty of what the problem is and how it could be fixed. Attempts are made to contact the owners. Letters are sent. Phone calls are made. Sometimes businesses make the changes after being educated. . . .

Only after she's done all this does she file suit, she wrote, and quickly goes on to point out that " Buildings are fixed, often for relatively little money."

"These suits are not moneymakers," she stressed, compelled to defend herself. "In South Carolina . . . there are no punitive damages." (Read Van Deusen's op-ed.)

Against the backdrop of the Medley story, whose play in the blogosphere has just started, it might be useful to reflect on Linda Van Deusen's story.

And to try to spend some time thinking about why people like Van Deusen are made to feel like the villain rather than the victim. In most of the news reporting about access lawsuits, particularly in California, the victim is the poor business owner who, after nearly 2 decades of failing to obey access laws, faces the lawsuit.

And then there is Laura Lee Medley's story. Which -- trust me -- is the one everyone will remember.

Posted by mjohnson at 07:28 PM | Comments (4)

May 11, 2006

Pigs, goats, wheelchairs, freedom

Kevin Gadsey continues his soul-searching look at the job independent living centers are doing -- or not doing:

Except for a few, the people CILs are serving currently want to be served - they are trying to get on Social Security rather than off, they are asking how to get things the easy way. Is it laziness or is it lack of knowledge? Even if we tell them they can be free and have a full life, will they want to put in the hard work to get there? I’m beginning to wonder ....

This is powerful and necessary thinking. Read it here:

Chaironwheels Blog » Of pigs and goats and wheelchairs

Then post a comment over there and start a discussion. Here's the comment link.

Posted by mjohnson at 05:47 AM

May 08, 2006

The elephant in the living room

A story in a special "jobs" section of the Atlanta Journal-Constitution on Sunday reports findings of a "recent study" by the Bobby Dodd Institute in Atlanta:

nearly half of the 200 human resources representatives surveyed in metro Atlanta said, "Disabled persons cannot adequately perform required work duties."

Nearly 90 percent of small companies and close to 75 percent of large companies don't employ any workers who have developmental disabilities. And nearly one-third of large companies and almost 60 percent of small companies don't employ any workers who have physical disabilities. . . . ( from Advocates work to boost employment of disabled)

I'd think any disability rights activist -- or anyone familiar with the concepts of disability rights -- or even just generic civil rights for that matter -- would see the prejudice leaping out at 'em in the "Disabled persons cannot adequately perform. . . . " statement.

Nowhere in the story, though, was there any mention of discrimination, or of any possible violation of laws like the Americans with Disabilities Act. The story by reporter David Hughes does say that the study "goes a long way toward explaining why the unemployment rate for people who have disabilities hovers at 70 percent overall -- and 40 percent for college graduates who have disabilities." But he never once mentions the "D" word.

This story is as good an example as I've come across lately of the elephant-in-the-living-room approach to covering disability issues: Whatever you write, don't notice the -- shhh! -- discrimination.

Hughes never quotes anyone who offers anything beyond the kind of "they need more training" blame-the-victim pabulum that's standard today in looking at disability problems. Even if it's not "blaming," exactly (although that's exactly what I think it is, really), it certainly does place the burden of the problem on either the disabled person -- who needs more "training" or more "motivation" -- or on "programs" that don't go far enough to "help" disabled people get jobs.

Hughes writes,

[T] hose who grapple with the issue cite several contributing factors:

  • Some receive Social Security benefits, which are lost if the recipient makes too much money.

  • Parents sometimes have low expectations, and the student underachieves.

  • Some students who have disabilities shy away from activities that look good on resumes, such as competing on the debate team or editing the school yearbook. . . .

Look at that last reason: students may "shy away from activities. . . "??? Any thought of Hughes reporting on why they might "shy away"?

Nope; that's the same elephant.

The disabled people referred to in the story (and, by the way, none are quoted; only professionals and job experts are allowed to offer reasons) face "stigma" or "challenges." Not bigotry. Not prejudice. Not discrimination.

No; the story's all about wondering what the problem is, and quoting folks from this or that jobs program who can "help."

Somebody ougtha help by catching that elephant and taking a good look at it.

Posted by mjohnson at 08:04 AM | Comments (2)

May 07, 2006

Using the 'Safety' Hook

A little 3-paragraph news story from TV station KAKE in Wichita, KS that I ran across awhile back tells of a lawsuit being filed against the town of Winfield, KS by the Kansas Disability Coalition over inaccessibility -- things the city's never bothered to do to comply with the now almost 16-year-old Americans with Disabilities Act.

But, judging from this April 7 news story, the suit's taking a novel approach: that an inaccessible city simply isn't "safe" for disabled residents.

Here's the story: Lawsuit Claims Town is Unsafe.

According to KAKE's report -- and that's the only news outlet I could find who had done a story on the suit -- Dee Winter and Rebecca McNeish, who have multiple sclerosis, say it's hard to live in Winfield because of its inaccessibility.

Now I don't know who dreamed up the "unsafe" angle -- could be it's just a hook the TV news reporter came up with on the spur of the moment.

But it seems to me it could have real possibilitiies. Sort of a "quality of life" angle. Cities that aren't accessible aren't safe. I'd agree with that -- they're not safe for anyone, disabled or not yet disabled.

Of course this approach could backfire, too, given the public's typical attitudes toward access: I could see nasties telling crips, as Jerry Lewis did, to "stay in your house!" if they think it's so "unsafe" out in the streets.

The story ends with this:

Attorneys for both sides say they don't want this case doesn't go to trial. They hope they can come to an agreement relatively soon and start making the town safe for everyone.

It will be interesting to see if this gets any more media coverage.

Posted by mjohnson at 10:56 AM | Comments (0)

May 05, 2006

Is the winner's circle wheelchair-accessible?

Tomorrow's the big day for Dan Hendricks and his horse Brother Derek, who by racetime will likely be the odds-on favorite to win the Kentucky Derby. Maybe after tomorrow Hendricks can get back to being a horse trainer first, not a free ride for reporters and editors who've pretty much had a field day these past weeks with the "overcoming adversity" and "triumph over tragedy" and "paralyzed trainer won't quit" cliches (see earlier blog entries here and here).

We should all be left with just one question: is the winner's circle wheelchair-accessible?

I'll be the first to admit that I haven't begun to skim the hundreds of "amazing!-trainer-in-a-wheelchair" stories about Hendricks, but I think it's a pretty good bet that few if any focused on the wheelchair-accessiblity of the Churchill Downs complex. They should have, of course; but reporters rarely bother to ask wheelchair users about the access problems they run into; they seem to be far more interested in focusing on the "inspiring overcomer" "true grit" angle.

A shame, too. The public could learn a lot more about what obstacles disabled people face that we as a society could be eradicating. Or which should have already, under law, been eradicated.


Actually, I'm laying odds (wow! horse-race handicapping metaphor! ) that Churchill Downs is fairly wheelchair accessible. I've noticed good access whenever I've been out there -- and I usually go to the races once or twice a year (I live in Louisville). I've been to Churchill Downs with wheelchair users and never encountered problems.

But what about the winner's circle, where the horse -- and trainer -- goes?

I'll bet all of that -- and the backside and the path to the starting gate -- the places the horses go -- is wheelchair accessible.

Because horses, I'll bet, don't like steps and stairwells. Animal behaviorist Dr. Temple Grandin in her latest book talks about how changes in the ground pattern, changes in level, can spook animals. And I'll bet owners and trainers (and thus, racetrack owners) want to make sure that nothing -- absolutely nothing -- is in the way which might cause high-strung racehorses to falter or spook as they're walked to the starting gate. They want to ensure the racehorses' way is as smooth as possible, literally and figuratively.

That'd be a good policy to use for people, too.

Posted by mjohnson at 05:28 PM | Comments (3)

May 04, 2006

'Campaigning' for access

Just opened up my new Ouch! e-mail newsletter and clicked a link to Ian Cook's latest:

Like new style 'lite' beers and lagers, there's a new brand of disability politics on the market. It is in many ways similar to the politics of old - it takes issue with the inaccessibility of buildings and facilities - but it does so in a more collaborative and less 'in your face' way. And it appeals to as many - if not more - non-disabled people.

I went on such an event - Scope North West's Big Night Out - in Manchester last week (Friday 28 April) to get a taste of this new flavour of lite rights campaigning.
Celebrity support for the Big Night Out came from Coronation Street stars Sally Lindsay & Anthony Cotton

The aim of the Big Night Out was to undertake an accessibility survey of pubs, clubs and leisure facilities around Manchester city centre, while performing a series of fun tasks, wearing fancy dress and raising money. A serious aim - part of the charity's Time to get Equal campaign - but one which was also fun. . . .

Cook's article made me wonder once again what's gone wrong with crip activism in the U.S. Or maybe, just plain ol' "where did it go?" Or even "did it ever exist?"

In Britain the big national groups -- groups akin to our groups like the Paralyzed Veterans of America -- seem actually interested in rights and do "campaiging" for rights as a main focus. Unlike here, as far as I can tell.

"Campaigning" is a British term that I guess has its closest U.S. analogy in "activism" or "protest." It's not exactly that; but it's close. It seems to mean pressing for change in a public way. Probably the group who does stuff here that most fits that term would be PETA.

No disability group in the U.S. does anything like that. The U.S. disability "movement" seems to have ceded all activism work to ADAPT. Not sure why that is. (Yes, there's Not Dead Yet, but they are truly a one-issue group -- as they should be.)

Yet ADAPT cherishes its grassroots bad-crip image so much that it really can't do this more middle-of-the-road stuff like Scope's doing. And they don't have the national recognition of, say, PETA.

What we need is a group that's both "professional" in the sense that it has decent resources, and staff -- and is also activist.

I think of all the individual crips who file access suits and get crucified in the press for doing so, and wonder, again, why big national organizations (or even state organizations, like those mostly do-nothing statewide independent living councils) don't get involved in access rights and take the heat off the lone wolves who get demonized.

Read Cook's report
-- and then wander around on the Scope site -- and ask yourself? Why aren't U.S. groups like the National Council on Independent Living doing it? Or the well-funded National Organization on Disability? Or even UCP -- the sister "charity" to Scope (which used to be called the Spastics Society. . . see here and here ).

This isn't the first time I've said that the U.S. disability rights movement could learn from the folks across the pond. And it likely won't be the last.

By the way: when you click on that Time to get Equal link above, you'll see it's all about fighting "disablism" -- and that may make you think about why it is that most of the effort behind BADD was organized by British crips.

Posted by mjohnson at 10:38 AM | Comments (9)

May 02, 2006

The Dan Hendricks stories

Back on April 10 I blogged about the Dan Hendricks stories.

Hendricks, trainer of hot Derby contender Brother Derek, now uses a wheelchair, the result of a spinal cord injury a few years back. There continue to be hundreds of the "inspiring overcomer" stories written about him -- latest Google count was over 150 current ones -- including A Trainer's Triumph, the fairly standard example of the genre which graced the top of the front page of Monday's Courier-Journal and made me remember I wanted to return to this theme.

I went back to trusty ol' Google News and in an instant was rewarded with The Washington Post's Hendricks's Spirit Remains Unbroken and the New York Daily News's There is crying in racing. You don't even need to read these stories to know what they're about, do you?

But the best thing I found there was this story from The Bloodhorse, the racing industry publication. The headline caught my attention, and pretty much said it all:
For Hendricks, Dealing With Media Hardest Part of Derby Experience

Not surprising, eh?

Hendricks is attracting a lot of attention at Churchill Downs because Brother Derek is a top Derby contender. But the trainer also is one of the race's most compelling stories because he is paralyzed from the waist because of a motocross accident. The questions about Hendricks' injury and the motorized wheelchair he uses to get around are inevitable. And he must answer them over and over again.

And then, of course, Bloodhorse reporter Dierdre B. Biles does the precise same thing to him. The rest of Biles's story is about -- yeah -- his accident and his "comeback."

"It gets a little monotonous, the same questions," Hendricks tells Biles, in one of those kind of mirror-looking-at-a-mirror reductio ad absurdums you get when reporters write stories about crips who say they don't like people writing stories about them.

Of course Hendricks, like all good sports stars, acts all agreeable when questioned by reporters about all this. To Biles, he says, " . . . but I understand where everybody is coming from. They've got their own paper to write for and their own way they want to put it. It's just part of it."

Yep. It'd be nice if they could get beyond the wheelchair, though.

Readers, help me out here: Click on this Google News link I've fixed up and read some of the stories that appear. Post a comment here on the ones that are particularly galling -- or the ones that manage to get out of the "triumph over adversity" mode and get on with the coverage of the trainer and the horse.

Posted by mjohnson at 02:23 PM | Comments (2)

May 01, 2006

Andrea Clark and Texas futile care

Update May 8 -- Andrea Clark has died. Read statement from her sister here.

Update May 2 -- St. Luke's hospital agrees to keep Clark on life-support -- for now. More from Wesley Smith here.

Most people today would not call the kind of thing that is happening to Andrea Clark "disablism." Most people have never even heard the word -- or if they have, they consider it only something made up by the PC crowd. In Britain, it seems, "disablism" is taken quite seriously. Perhaps not yet on a par with sexism or racism, but up there. In short, it means bigotry against disabled people.

Today many many disability bloggers, Yours Truly among them, will be "Blogging Against Disablism." I consider that what's happening to Clark -- and to others like her that don't generate even the small amount ofnews she has -- to be disablism in its ultimate form. We may return to that point later today. For now, take a look at this story from Sunday's Houston Chronicle:

. . . St. Luke's officials said that they will not carry out their previous plan to discontinue Andrea Clark's life-sustaining treatment on Sunday, which will be 10 days after the hospital notified her family it was invoking Texas' futile-care law.

The law allows hospitals to halt medical care in cases it deems hopeless.

Hospital officials would not say how they will proceed with the case, which has ignited passions on Internet message boards and drawn harsh criticism of the law and St. Luke's position.

"I'm so exhausted, I don't know what to think now," said Lanore Dixon, Clark's sister, who has led a campaign to stop the hospital. . . .

Bloggers have been covering the story of St. Luke's plan to take Clark off "life support" for over a week -- from the day Dixon posted an entry on the Democratic Underground blog: KILLING MY SISTER - WE ARE PROTESTING - HELP US. That certainly got bloggers' attention. In that initial post, Dixon wrote,

The hospital ethics committee met the day before yesterday and concluded that Andrea's treatment (respirator and dialysis) should be discontinued. We have ten days to move her from that hospital or they will "pull the plug" and let Andrea die. Andrea, until a few days ago, when the physicians decided to increase her pain medication and anesthetize her into unconsciousness, was fully able to make her own medical decisions and had decided that she wanted life saving treatment until she dies naturally. We have learned that this is part of the process, when hospitals decided to declare the "medical futility" of continueing treatment for a patient. But, this is not a Terry Schiavo case; not anything like it. Andrea, when she is not medicated into unconsciousness (and even when she is, and the medication has worn off to some degree) is aware and cognizant. She has suffered no brain damage to the parts of her brain responsible for thought and reason, or speech. She has only suffered loss of some motor control. The reason that the physician gave to medicate her so much is that she is suffering from intractable pain in the sacral region (in other words, she has a bedsore that causes her pain). This is not reason enough, in our books, and we are trying, as we speak, to get Andrea's medication lowered so that she can speak to us.

Since then there's been lots of discussion -- but mostly all in the blogosphere. Sunday's front-page Houston Chronicle story signals the first time the story has been "legitimized" by the mainstream print media.

People like Wesley Smith have been warning us about "futile care policies" for a long time.

This has come up before. Some of you may recall that back when Terri Schiavo was being starved, progressives were talking about the case of an infant boy at a Texas hospital -- Sun Hudson, who ultimately died; and a few months ago I blogged about Tirhas Hatbegiris, also in a Texas hospital, also "allowed to die" based on the "futile care policies" in place in Texas hospitals.

Besides Smith's explanations, a good overview of what goes on in these Texas cases can be found here on the HealthLaw Prof Blog, in a post by Thomas Mayo, an attorney and law professor whose profile tells us that "he is a member of the Texas Advance Directives Coalition, which was responsible for drafting the 1999 Advance Directives Act and its 2003 amendments. He currently serves on five hospital ethics committees. . . "

Dixon is telling folks that there will be a meeting Tuesday in which the doctor who wants to continue treating Clark will try to persuade the hospital to support that effort. Dixon believes that calls and letters to the hospital will help.

You can help:

Call 832-355-1000 -- the operator will transfer you to public relations, which is fine. Register your opinion.

And/or write: Dr. David Pate, Hospital Administrator St. Luke's Memorial Hospital 6720 Bertner Ave. Houston, TX 77030-2604.

Posted by mjohnson at 06:04 PM | Comments (3)

More on 'disablism'

I said I was going to write more about 'disablism' today and I have. It's here: Ragged Edge Online: 'Disablism': A Closer Look. Read it, please.

Posted by mjohnson at 05:35 PM | Comments (0)