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April 28, 2006

Mayor won't permit wheelchair ramps to mar sidewalk

This story should fall in the stranger-than-fiction category: The former mayor of Altoona, PA, Pat Stoner, is telling business owners they can't put "handicapped access" ramps on their buildings because the "streetscape’s purpose was to make downtown more pedestrian and cycling friendly."

I wish I were making this up.

The board unanimously agreed that Paul Mahoney, owner of Puff N Snuff at 978 Pennsylvania Ave., should not be allowed to build a wooden ramp to make his store compliant with the Americans With Disabilities Act. “I just think it’s wrong, and I’m going to push it to the limit,” Mahoney told the three-member board after it rejected his request for a variance to the borough setback ordinance. He told board members they were more interested in how the town looked than compliance with state and federal law, or allowing people with disabilities to have access to his store.

I'm not even going to make fun of reporter Greg Bock for using the tacky "handicapped accessible" phrase.

Sheesh.

The story's from the April 19 Altoona Mirror: Store owner loses his bid to add ramp

Posted by mjohnson at 03:09 PM | Comments (4)

April 25, 2006

Weeks and Months

West Virginia's just passed a law establishing the third week in October as “Disability History Week.”

 From Disability History Week Bill Becomes Law; Celebrated Third Week in October (Huntington News Net):

The legislation will: require instruction in public schools on disability history, people with disabilities, and the disability rights movement; encourage colleges and universities to conduct and promote activities that provide education, awareness and understanding of disability history; encourage the Legislature to provide recognition through an annual, joint proclamation; and provide resources for instruction and activities.

West Virginia Statewide Independent Living Council director Ann Meadows told the Huntington News that this was the first officially recognized "Disability History Week" in the nation.

I couldn't help but reflect: We have Black History Month, Women's History Month, and Disability History... Week.

Posted by mjohnson at 05:40 AM | Comments (4)

April 19, 2006

A soft story

There's something "soft" about the story Small curb a big barrier for wheelchairs, strollers from the April 19, 2006 Westchester, NY Journal-News:

The curb is just 6 inches high, but it might as well be a cliff to William Ferrer. He can't climb it in his electric wheelchair. So on a recent trip to a local drugstore, the 77-year-old was forced to maneuver around parked cars and two-way traffic.

and

The Americans With Disabilities Act has helped those in wheelchairs gain access to municipal, recreational and commercial districts. Yet there are many outdated residential intersections in the Lower Hudson Valley that make it difficult for wheelchair users to commune with their neighbors. And bringing the thousands of intersections up to code can be a tricky endeavor, advocates for the disabled say.

"This is one of the most difficult things to get enforced under the ADA," said Melvyn Tanzman, executive director of Westchester Disabled on the Move, an advocacy organization. "It's a really hard thing to track down, and the task overwhelming."

and

"Unless you're in the field or work in the disabled community or you have a family or friend in a wheelchair, it isn't something you would necessarily think about. People just don't really think about it all the time," said Evan Latainer, director of the Westchester County Office of the Disabled.
.

Posted by mjohnson at 06:00 PM | Comments (1)

April 17, 2006

Casualties of the war at home

We hear about the deaths in Iraq, deaths caused by our government's wrongheaded war. Plenty of people are up in arms about that.

Our government causes deaths at home, too -- but the outrage over that, when it even exists, is muted.

An Easter Sunday news story in Monticello NY's Times Herald-Record tells of Eddie Rosa who died because he couldn't afford the now-mandatory prescription drug payments for the 23 medications he was to take daily.

Reporter Tim Logan writes,

Until Jan. 1, Rosa got his drugs for free, because he was a "dual eligible" - poor enough for Medicaid and disabled enough for Medicare. Then Medicare Part D began. It's designed to help seniors pay for prescriptions, but it meant dual eligibles had to pay a little bit for theirs.

Just a little, a $1 to $3 co-pay per prescription, but it adds up. Irons figures Rosa would owe about $30 a month in co-pays.

Rosa didn't get his meds; he got sick; hospitalized; died. (Read Eddie died; was Medicare a part? )

The tone of the story is not one of outrage, however, but rather a kind of almost meek submission.

There's little help out there for people in Eddie Rosa's situation, Logan. writes.

But they shouldn't give up. That's what local pharmacists and senior advocates say.

"At this point, the only reliable resource is the kindness of friends and strangers," said Robert Hayes, president of the Medicare Rights Center.

So ask your doctor, pharmacist or hospital. They may be able to help.


Beyond the inexpressible sadness of an individual's death there is the sadness of a society and a national media that just seems to.... I don't know... seems to have given up.

The story's reported, but it's a kindly, soft story. No outrage. Outrage isn't permitted anymore about things like this. Oh, you can get outraged over a Bush-ism or about Cheney shooting a comrade on a duck hunting snafu.

But people dying because of our government's new drug law, passed by the pharmaceutical companies? No; outrage isn't proper, seems like.

Nor is outrage much seen in stories about people dying because of nursing homes.

A week ago Monday, the Miami Herald carried the story of a twentysomething who said he planned to die rather than move to a nursing home. The nursing home was the only option the state was offering.

His sentiment's not all that surprising. What's surprising is that it made news, of a sort.

Man battles state over at-home care is the story from Herald reporter Carol Marbin Miller. She reports that state officials won't let 23-year-old Marlon Barrera have in-home help. Or "home nursing," as Miller puts it.
Though the story is replete with the usual tear-jerker lede -- the young Barrera "in his mind... is Bruce Lee" -- and the typical "stricken with" and "his plight" yada yada yada (Barrera has Duchenne's muscular dystrophy), Miller's got a handle on the issue, alright -- she sees that the young man is planning to end his life rather than be forced into a nursing home. And to some extent she tries to put the blame where it belongs:

...[O]fficials with the state Department of Children & Families are refusing to pay the home nursing bills. They insist Barrera go instead to a nursing home at perhaps double the cost, while he becomes one of more than 3,000 Floridians on a waiting list for home-based healthcare.

Barrera says he will die instead.....

''I'm going to disconnect the [breathing] machine,'' Barrera said. ...

Added his mom: "I've already paid the funeral home. The doctors already have said if he gets sick, he's not coming back.''

She quotes State Sen. Walter G. ''Skip'' Campbell, a Tamarac Democrat who chairs the state Senate Children & Families Committee, who says the legislature has never been asked to increase funding for the state's homecare program ("Indeed, the state budget for the Aged and Disabled Adults program has remained flat in recent years," she writes) and calls the situation with Barrera "unconscionable".

What she doesn't do is get any official to explain to her why, if the state has no money to pay for in home services, they do seem to have money available to pay nursing home operators to provide him a bed in a nursing home, at twice the cost.

I've almost never seen any reporter ask that question.

Posted by mjohnson at 01:52 PM | Comments (2)

April 14, 2006

Not My Advocates

I got an email from Steve Drake the other day about an email he'd received from the Hydrocephalus Association looking for stories from people with hydrocephalus and their families. Drake, Research Analyst for Not Dead Yet, says says he's "in what is referred to as the 'first generation' of shunt recipients."

"The form is horrible in its wording," he said. "It's all about asking what 'obstacles' have been 'overcome.'" 

But the real icing on the cake is at the end of the form, where there's a chart provided. It says, "please provide a subjective assessment of development of the person with hydrocephalus at this time by putting a check in the appropriate box."

The categories are: "Cognitive", "Social/Emotional", "Physical" and "Other". The choices to check off are, in reverse order:

  • Severely Impaired

  • Delayed & Challenged

  • On Par w/ Age Peers

  • Over-Achiever

Drake noticed a funny thing right way, even leaving the many language issues aside: "If I care to rate myself 'above-average' or 'excelling' in an area," he said, there's no category for that: the only available category is for "Over-achiever."

"In other words," Drake said, "no matter how I see myself, I am pathologized -- seen as dysfunctional.

"I am bothered by just about every bit of the language in this form and the attitudes it conveys," he went on. "Sheesh. These are supposed to be advocates.

"Not mine, apparently."

I could add my 2 cents' worth, but don't really think I need to. Maybe I'll just offer an echo: "These are are supposed to be advocates?"

Drake's email and my subsequent exchanges with him about it put me in mind of a draft of a report I was given to read recently. It's not a final report yet, so I'm not going to say anything specific about it, except to say that it offered more evidence -- as if we needed more -- that "professionals" (the vast group of medical folks and researchers who "do" stuff to people with disabilities) are still firmly wedded to the medical model and steadfastly refuse to abandon it. Researchers continue to plod along as though the Americans with Disabilities Act were not in existence. They make no reference to it at all in their work. They look at "problems" people face and find not discriminatory policies and practices but deficiencies in the individual who is disabled. Much like the people responsible for creating the Hydrocephalus Association form, they try to determine if individuals have "adjusted" or "learned to overcome" obstacles.

You'd think, 16 years after Congress passed a law acknowledging that problems disabled people face are largely those of discrimination, some of these groups would wake up and smell the coffee.

Posted by mjohnson at 08:00 AM | Comments (7)

April 11, 2006

The Wreckage of 'Spaz'

Tiger Woods told CBS on Sunday: "As good as I hit it, that's as bad as I putted and it's frustrating, because I felt so in control of my ball from tee to green, and once I got on the green I was a spaz."

San Diego crip Cyndi Jones heard him say it on live TV; she was watching. Lots of other folks heard it, too.

Then some odd stuff happened.

The Los Angeles Times simply changed Woods' quote -- changing "spaz" to "wreck." Or so reports the London daily The Telegraph.

The British press has been all over the story. The U. S. media seemingly simply helped Woods out of a potentially embarrassing situation. And everything in the U.S. has been . . . real quiet.

Across the pond, it's a big story: Woods in the dock over 'spaz' comment (Times Online, UK ) | Tiger under fire (Manchester Evening News, UK ) | Fury over Tiger 'spaz' jibe (The Sun, UK ) | (Scotsman, United Kingdom ) | RESULT! - WOODS GOOF A FINE MESS (Mirror.co.uk, UK ). And Down Under, we got Woods taken to task for 'spastic' comment (Stuff.co.nz, New Zealand ).

We wouldn't even have known that U.S. news media changed Tiger's words had it not been for a more vigilant -- or less pandering -- international press: US media cover up Tiger's Augusta gaffe (Telegraph.co.uk, United Kingdom ) | Say what? Media erase Tiger's gaffe (Sydney Morning Herald, Australia ) | Tiger the 'spaz': not for print (The Age, Australia ) .

Lewine Mair writes in the Telegraph: "America's leading newspapers yesterday helped Tiger Woods evade controversy by ignoring his use of the word 'spaz' to describe his poor putting in the final round of the Masters at Augusta. The LA Times changed the word to 'wreck' while the New York Times, the Washington Post and the Boston Globe all expunged the word completely."

Amazing.

The howls came, not surprisingly, from our media-savvy crip counterparts. Leading the charge, ironically -- or perhaps fittingly -- was the nonprofit "charity" (the Brits' word) SCOPE, which in the past was named the Spastics Society -- a group somewhat akin to our United Cerebral Palsy group.

Ouch! has the story here . Yes, there should be controversy. Yes, Tiger should apologize . And he did: Woods says sorry for 'offensive' remark (Scotsman, United Kingdom ) | Woods apologises over remark (TVNZ, New Zealand ) | TIGER WOODS last night apologised for saying he putted like "a ... (Mirror.co.uk, UK ) | TIGER FOOD FOR THOUGHT (Mirror.co.uk, UK ) | Tiger: I'm so sorry (The Sun, UK ) | TIGER SORRY FOR 'SPAZ' COMMENT (Mirror.co.uk, UK ).

Over here in the U.S. it's as though none of it happened. Which, I suppose, is how the U. S. media wanted it.

The U.S. crip movement is not only last out of the gate again, it's not even at the gate, as far as I can tell.

Seems U.S. crips just don't care if folks use the word "spaz." (Or it's possible they don't know about it, given that the U.S. media were quick to cleanse Tiger's mouth for him.) The same dissonance occurred back in the fall with Colours' "Spazz" line of wheelchairs. It caused an uproar in Britain. Nary a peep here.

The single reference I could find to any of this in the U.S. media was a story this morning from the San Jose Mercury News with the coyly snippy headline Verbally challenged: WOODS' CHOICE OF WORDS UPSETS BRITISH : "Those blokes in London sure got their knickers in a twist off that cad Tiger," began Mercury News reporter John Ryan's story, going on to say only that "During his CBS interview Sunday at the Masters, Tiger Woods explained his downfall by saying, 'Once I got on the green, I was a spaz.' It went mostly without notice or comment stateside."

Well, yes.

The BBC disability website Ouch! would be right to wonder why U. S. crips seem to care so little about celebs using disability slurs.

Not a single U.S. crip group seems to have noticed anything, much less complained.

Bigoted? Not Woods!

I've made a which-is-worse? list, but I can't decide which one belongs in the No. 1 position:

Think about that last one for a minute.

As we leave this topic, try to picture the furor that we'd be reading about in the U.S. had the media expunged the "N" word from a bigot's mouth. Give it some thought. Then add a comment here, would ya?

Posted by mjohnson at 06:22 PM | Comments (8)

April 10, 2006

The Dan Hendricks stories

The Kentucky Derby's only a month away. Here in Louisville, where I blog from, the Derby's a big, big deal. And the news is full of everything and anything racehorsey.

I'm not one to read the sports section usually. But Friday morning my eye fell on the headline Call 'em training wheels in the Courier-Journal lying there on the breakfast table.

There was a photo of a man looking over a horse -- a man in a motorized chair. Looked like he knew what he was doing with that horse, too. Looked like a trainer.

So I read on, and thus made the acquaintance of Dan Hendricks, trainer of Derby hopeful Brother Derek.

"Well, this should be interesting," I thought. "A whole month for reporters to offer up versions of the horse- trainer-paralyzed-in-accident-makes-comeback feature story."

There's for sure a slew of stories out there already -- a quick Google News search gave me over a hundred -- many of them variations on the "Wheelchair-bound Hendricks oversees Kentucky Derby favorite" story by AP Sports Writer Beth Harris ( here it is in the San Jose Mercury News and again from ABC). Note the use of "wheelchair-bound." Nobody in the media seems to know there's anything wrong with the term.

The stories abound in cliches -- so many I'm not even going to bother listing them here. You know the ones, right? "Despite his..." "Overcomes his..." "Doesn't let handicap stop..." ? And so on?

Here's a project for you: I'd like to suggest that readers make their own Google alert using the keywords "Dan Hendricks" and "wheelchair" -- and watch the emails pour into your inbox. If you find any particularly awful -- or good -- stories, post a comment below, will ya?

I leave you with some quotes CJ sports writer Jennie Rees worked into Friday's story:

I don't think Dan wants anybody to feel sorry for him. Everybody has their own wheelchair in life; some people's you can see, some you can't. With Dan's, you can see his.

"Everybody terms a situation as being handicapped. Dan isn't handicapped. Dan is completely capable. He's just got to do things differently."

Oh -- and I didn't see any sports reporter writing anything about the inaccessibility of anything. Let me know if you find any who do.

Posted by mjohnson at 02:05 AM | Comments (2)

April 04, 2006

Suffering Sibs

In today's New York Times we have this story: Siblings of Disabled Have Their Own Troubles.

This turns out to be a better article than I'd anticipated.

The distinction is subtle, but there's a shift here from previous stories of this type. Stories like this seem to get trotted out periodically; typically their flavor has a heavy dose of how awful the lives of the "normal" kids are; what a burden it is to have a disabled sib -- they get all the attention; you're supposed to be grown up and not have any problems yourself, yada yada yada. Not to denigrate any of this -- because it surely is true that nondisabled sibs do have problems like these. But there always seems to be something about the tone of such pieces -- a not quite stated but implicit "blaming the victim" tone.

I was prepared for the worst when I started reading it -- reporter Gretchen Cook had to use the word "challenges" (which always makes me go "grrrr!") and she did trot out the usual litany --

Some children say they fear "catching" their siblings' disabilities. Others may wish that they, too, were disabled, so that they could get all the attention their siblings do. And many suffer embarrassment about their siblings' inappropriate behavior or abnormal appearance, and then feel guilty about it.

But then the story seems to take a kind of turn, and Cook gets at some of the reasons behind the problem, which I don't often see in stories like this. And then there's this:

Mr. Meyer [Don Meyer of The Arc's sibling support project] said that when asked about the most embarrassing moment of their lives, few of the children cited anything having to do with their disabled siblings. Instead, most recounted the usual teenage humiliations: problems in romantic relationships or dealing with parents.

And that, Mr. Meyer says, underscores an important point: "When I talk to parents about embarrassment (about disabled siblings), I ask them to keep in mind that it's an age-related condition," he said. "That's the good news, that a lot of that seems to be resolved by even their late teens."

Well, anyway... read it and let me know what you think. Are things changing?

Posted by mjohnson at 03:30 PM | Comments (6)