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December 30, 2005

Another columnist sings Julian's woes

Not much comment needed from me on this one:

Some excerpts from the San Diego Union Tribune's Logan Jenkins' Dec. 29 column Laws meant to help disabled are hurting towns like Julian show the predictable pattern these columns usually take.

I... spent time with my father, who was blind for several years before his death. Most of us have watched family members become disabled by age, disease or accident....

If I were disabled, maybe I'd cheer on enforcers – some call them litigious predators – who profit from disabled-access law, no matter how inoffensive the offense. But able-bodied as I am, I can't cheer.


.... disabled watchdogs, many of them working with attorneys, have threatened businesses, large and small, with lawsuits over ADA infractions. In most cases, the small businesses settle to make the hassles go away.

There's no lack of targets. It's estimated that 98 percent of the nation's public buildings violate some provision of the ADA. Even if a business knocks itself out to make way for wheelchair customers, there's always something, ....

Jenkins goes on to describe Pinnock's suits, and finally his article comes around to this point--which is the constant point raised by businesses in Californial:

Change the law.....AB 20, authored by Assemblyman Tim Leslie, R-Roseville, which takes the profit motive out of ADA lawsuits involving minor infractions. ...

A humane filter would be applied to California's law...

Last May, I reported on efforts in California to pass this and similar laws. Read "Business Strikes Back".

Email Jenkins at

Posted by mjohnson at 07:28 AM | Comments (1)

December 29, 2005

Yeah, that's what we've been saying....

No surprise here for disability rights activists, but seems now a researcher out in San Diego -- a psychiatrist -- has discovered that -- surprise! -- "physical health" is not a good indicator of "successful aging."

"For most people, worries about their future aging involve fear of physical infirmity, disease or disability," said the press release about Dilip Jeste's study, but said that the "findings appear to contradict the widespread belief that successful aging is solely dependent on physical condition and health."

From Forbes:

The 500 study participants were between 60 to 98 years of age and lived independently, outside of any nursing home or assisted living center. Each of them were asked to rate their personal degree of successful aging on a 10-point scale, with 10 being the most successful. Their average rating was 8.4.

According to the researchers, the majority of respondents who gave themselves a high rating would not meet the criteria for successful aging as assessed by traditional physical health measures, such as the absence of disease or disability.

"People who think they are aging well are not necessarily the most healthy individuals," Jeste said. "In fact, optimism and effective coping styles were found to be more important to aging successfully than traditional measures of health and wellness.

And not having to live in a nursing home might have something to do with it as well. But none of the articles we read about this study seemed to pick up on that point. They all noted that Jeste credited the study subjects' "attitude."

Activist crips alwasy say that disability is no indicator of happiness. But of course doctors and health professionals always think it is.

This goes along with the finding in other studies (I don't have the citations but maybe someone can send them to me, and later I'll put them here) that show that severely disabled people's own perceptions of their "quality of life" are consistently higher than what "medical professionals" think they should be.

This study was released a few weeks ago and had a flurry of news items, but nothing too huge. Fox News reported on it. Other stories about the study can be found at WebMD and SeniorJournal.

Interesting that the study credited "attitude" as the cause of "successful aging." I wonder whether researchers have thought to look at why "attitudes" among this population are good. That is, if it isn't a chicken-and-egg thing: if you get to stay in your home, if you are allowed to be independent, and around friends, then your "attitude" stays fairly good. Hmmm....

There's an interview with Jeste at MedScape -- it's not the study itself, but it gives more detail than the links above. When I read it, though, I was struck with how often the theme of "health" kept coming up, despite the finding that "health" is not the key factor. Another hmmm.

Posted by mjohnson at 07:32 AM | Comments (1)

December 27, 2005

Speaking out in Julian

Kudos to disability access activist HolLynn D'Lil for submitting an opinion piece to the North County Times giving some much-needed perspective to the Julian, CA lawsuits. It isn't surprising that the paper published it. D'Lil is just the kind of "expert" newspapers look for in selecting opinion articles to run opposite their editorial pages.

In her article, Julian can make history with access, D'Lil writes,

I served on the California State Historical Building Safety Board and chaired the committee charged with bringing the California State Historical Building Code into compliance with the requirements of the Americans with Disabilities Act.... In law, there is no conflict between preserving our history and stopping architectural discrimination against persons with disabilities.

D'Lil's opinion article follows on the heels of columnist Mark Mush's Turning ADA into an ATM, which ran three days earlier.

It would be great if Edge-Centric readers took advantage of the North County Times's comment feature to post comments. Do it here.

The San Diego Union-Tribune took up the Julian access story over the Christmas weekend. Read J. Harry Jones' Disability warrior swoops on Julian.

Posted by mjohnson at 05:17 PM | Comments (1)

December 23, 2005

Football games and automatic doors

I've tried and tried to get over my frustration -- maybe even sadness -- at the story I read a few days ago in Dave Reynolds' Inclusion Daily Express email. But the feelings remain.

The story he reports on comes from the Portland Oregonian, and Dave has headlined his story "Student Sells Bracelets To Buy School Automatic Door Opener," which is more informative than the Oregonian's headline, ""Putnam teen draws a bead on opportunity." It also has a completely different flavor.

And that gets at part of my frustration, maybe. The story is about.... well, here are the few paragraphs Dave quoted, and they tell the tale:

Emily Lang has to throw her entire body into pushing open the heavy front doors at Rex Putnam High School, and some students in wheelchairs can't open them at all.

The 18-year-old senior, who has limited use of her arms and hands because of congenital deformities, thinks all students, staff and visitors should have easy access to Putnam through the front door. So Lang is trying to raise $1,700 for an automatic door opener by making and selling bracelets for $2.

Last Wednesday, she zipped around Putnam in a limping jog, setting up two small Christmas trees covered in bracelets to sell during lunch. She played Christmas music and did a little jig after one boy bought seven bracelets. (Read the entire Oregonian article.)

This can be seen as an extraordinary case of pulling oneself up by own's bootstraps, I suppose. Cheer on the determined teen who's solving her own problem through entrepreneurship! And today this kind of story is all the rage. The rest of the story focuses on her "inspirational personality" -- she's been able to "rise above" her disability, one source tells the reporter -- and the fact that the fundraiser is her own personal senior project, which she must do to graduate.

But... but... but...

I am left a bit at a loss: Shouldn't the school take some responsibility? I know, I know -- not legally -- automatic doors are never a legal requirement. (And yet their lack makes so many many places inaccessible! You must sit and wait at the door, like a dog or cat begging to be let in. Nobody, other than crips, seems to see anything wrong with that.) They did install some $100 closers, says the article, which make it easier to open -- if you can pull a door at all. But if she wants an automatic door, it's up to her.

Which gets me onto social obligation, which is where I think I've been headed all along with this piece. I think that is the source of my sadness: that people don't seem to see any kind of social obligation to provide automatic doors. Where is the parents' organization? Maybe the school is poor -- maybe it really can't afford the $1,700 outlay that the article says the doors cost -- but why aren't all the kids involved? Why only her? Yes, it is her senior project, but that in itself speaks volumes. Something she had to take on by herself.

Here's a thought: Let the football players take on the job of raising money to run the football program. Seem absurd? School fund drives for athletic programs are common, but it might be useful for us to ask: How come the players don't shoulder the responsibility for raising money for their program themselves, like Emily is doing for "her" automatic door? "

Apples and oranges? Seems to me it's all a matter of perspective. And expectation. Not to mention what it teaches the other kids about whose responsibility access is.

And while we're at it: If you don't know the wonderful news service that is Inclusion Daily, please wander over to the website and take a look. While you're there, take out a subscription. It's money well spent.

Posted by mjohnson at 10:49 AM | Comments (0)

December 19, 2005

The Julian jeremiad

(Updates on Julian
here and here.)

A couple of readers have let us know that the Ted Pinnock saga is far from over. In my Dec. 7 blog entry, I reported that the North County Times, a San Diego suburban paper, had taken up the cudgel against San Diego attorney Ted Pinnock for threatening to file Americans with Disabilities Act lawsuits against businesses in the small California town of Julian.

The Times seems to have found itself an easy -- and popular -- news topic, and has been continuing the coverage and editorializing. The themes are the typical ones:
* the attorney is out for money
* filing lawsuits is an evil act against small businesses
* it will cost too much

and on and on. The North County Times coverage of the issue is a classic of what I've come to realize is the suing-for-access genre. Crips are the bad guys; small business is the beleaguered victim, the attorney is out for money. In these sagas, there's always a story about other crips who think the ones suing are wrong; and the story about other wheelchair users who have patronized the establishment without complaining -- sometimes it mentions that they're lifted in; sometimes it doesn't. Larger causes are invoked: a lawsuit-happy nation run amok is a typical theme. I almost never see a story about the problems lack of access cause wheelchair users. I'm not sure, actually, that I've ever seen one -- at least not as part of this genre.

One of the things that has interested me about the Julian situation is that Pinnock has, in effect, done exactly what Clint Eastwood and pals have yelled for: he's provided advance notification. He hasn't sued -- although you might be forgiven for not noticing that, given all the furor. Instead of suing, he's written letters -- or, in other words, provided "notification."

And they're still not happy. Sort of gives you a glimpse as to what life would be like if a Notification Act were law: even when crips only say they intend to sue, they're castigated.

Below are some snips from the current saga, with links:

In a Dec. 3 story, "Businesses threatened with disability access lawsuits," reporter Teri Figureoa

Pinnock said the experience at Julian ruined his weekend. He wants each of the 67 businesses both to make the fixes and to hand over money ---- the minimum demand is $2,500 per business.

If the businesses decline to do either, he said, he will sue them in federal court. If he wins, he said, each business will not only have to make the changes, but also pay his attorneys fees ---- to the tune of $125,000 per lawsuit, he said. ...

"This ... predatory lawsuit is a tremendous threat," said Andy Kotner, the president of the San Diego-based Citizens Against Lawsuit Abuse. "It's a law and we honor it, and we want businesses to be compliant with it. We are opposed to the lawyers' tactics." (Read the full story.)

In a Dec. 9 letter to the editor, Elizabeth Nienhaus wrote that she was "surprised that the attorney general's office hasn't taken notice of that and done something to protect people from his methods. He could very easily destroy the whole town of Julian." (Read the full letter.)

A Dec. 14 editorial told readers that "Julian can help disabled and fight lawyer if they would "fix access problems, then resist cash grab by attorney who exposed deficiencies." Among other things, the editorial says that

society simply must stay engaged in the struggle against creeping legal liability for just about everything. While small-business owners should know about ADA requirements, nobody can keep track of the ever-expanding universe of government regulations....(Read the editorial -- and comments from readers.)

Yesterday -- Dec. 18 -- Figueroa was back with another article: "Disability-rights advocates split on support of lawyer." The headline says it all. Read the full story here.

I have long thought that a lot of the problem with such "sweeps" is that the gimp contingent usually hasn't been very media-savvy. They don't contact media in advance and explain the issue; they don't respond to critics in the media. They don't make the lack of access a public issue that people can identify with. The business faction has its sound bites; but the disability community rarely seems to know how to diffuse them or to make pre-emptive strikes. (Here's a story about a group who did know how to handle media.)

All of the North County Times stories and editorials have an accompanying comment function, much like a blog. It would be great if some folks commented. You might even want to email reporter Figureoa.

And speaking of commenting, we're emailing attorney Pinnock, asking him to post a comment on this blog about what he's doing.

Posted by mjohnson at 04:18 PM | Comments (11)

December 15, 2005


What is it with all these new institutions being built? I thought the move was to get rid of institutions.

Evidently not. In my Dec. 7 blog entry, I told you about San Francisco's bullheaded plan to rebuild the aging Laguna Honda city institution to the tune of nearly $750 million. That's million. ( Read the story from San Francisco Business Journal.)

On the heels of that outrage came news on Tuesday that not only was Kentucky committed to keeping open its Oakwood institution, despite repeated citations for abuse of residents (Ragged Edge news items here and here and here) -- but that it was going to spend "up to $1 million a month" to do so -- at least for the next several months. Amazing. ( Read more about that one here.)

Not to be left behind by the re-institutionalization bandwagon, tomorrow VA Gov. Mark Warner plans to unveil a new budget that includes "$290 million to fully replace two aging psychiatric hospitals and two institutions that house people with intellectual disabilities." (Read the Inclusion Daily story about that.)

What's behind it? Jobs, frankly.

The San Francisco Business Journal has this telling paragraph:

... the Service Employees International Union has provided the political juice. The facility has nearly 1,600 full-time-equivalent employees, and 1,357 -- 85 percent of them -- are affiliated with SEIU, one of the city's biggest political players. The union denies that its motive is protecting jobs, but says the city can find the money to both rebuild Laguna Honda and improve care in the community.

Sources close to the Oakwood circus lay the blame very nearly at the same spot.

Oakwood is the largest employer in the small Kentucky town of Somerset. Over a thousand folks have jobs at Oakwood. And they like those jobs. They pay well, and they want to keep them. The state wants them to keep them, too. Good employment for a small Kentucky town.

There are only about 300 residents, so this translates to close to 4 staffers per resident.

If I had a household staff of 4, my home would be on the cover of Architectural Digest. Not to mention that my clothes would be ironed (and the missing buttons sewn back on!), my gardens the envy of BHG readers, my parties constant and to-die-for. Sorta makes you wonder what all those staff are doing at that institution. Oops! Now I remember: they're abusing the residents.

Something is very very curious, and very very wrong, about this picture. Nobody seems to know the true story, and the institution goes on.

My source tells me that very few folks other than the state's Protection and Advocacy agency are calling for the closure of Oakwood. There are hardly any disability rights groups in Kentucky. There are some parent organizations, and frankly, it seems, they get money from the state themselves and don't want to jeopardize it by saying anything. And then, a lot of the folks in those groups are "professionals" -- as in "mental health professionals," you know -- and they work for the state. So their lips are sealed, even if they believe in their hearts that Oakwood should be closed. Which maybe they don't. I don't know, since they don't talk about it.

I believe that many of the Oakwood employees, like the Laguna Honda employees (and no doubt the Virginia institution employees) are members of SEIU. SEIU is a big national union.

Unions have certainly been known to fight for what are reactionary social practices in order to protect jobs, but in most cases they've lost. While I would generally like to be supportive of the labor movement, these people pressing to keep institutions open so they can have jobs are taking a position I simply cannot stomach. I know that with SEIU that disability activists have worked with them, and so I know that SEIU can "talk the talk and walk the walk" -- except they don't. (Ragged Edge has run stories on SEIU in the past -- here and here.) Or they do so selectively. Very selectively. They want it both ways -- jobs in "the community" and jobs in institutions, and most people see nothing wrong with that. Which is why stuff doesn't change.

The big problem, as with most stuff when it comes to disability, seems to me, is lack of public outrage. The public by and large doesn't really care whether institutions exist or not. They don't know the indignity -- hell, the horror (let's be exact here ) -- of institutional life. They seem not to believe it when it's told to them, or they figure that the real horror is just the disability and that no life is ever going to be good for Those People, so what difference does it make whether they are in an institution or a group home (which also abuses them -- see my blog entry on that )?

The SF Business Journal article gives a good example of this kind of thinking, in a way. Reporter Chris Rauber's coverage begins with the story of Gerald Scott:

Gerald Scott has been a resident at Laguna Honda Hospital for roughly half his life, ever since he was jumped and severely beaten as a young man 25 years ago. Now he hopes to leave.

Scott's attorneys say he's significantly disabled, with both cognitive and physical impairments, but would be capable of living in an apartment as long as he had an attendant to help with things like cooking, managing money and getting to doctor's appointments. ...

Note that Scott is a "patient" -- but also credit Rauber for referring to the man in subsequent references by his last name, which is standard for news journalism, rather than calling him by his first name only, as do so many news stories when reporting about disabled people. (This is a very small point and it doesn't really belong in this blog entry, but it's such a telling thing that I wanted to alert you to it as you watch and read the news.)

But then here comes the next sentence from Rauber:

Scott has had a sad life, and there's not much Laguna Honda or any other institution could have done to deal with much of his pain since Friday, June 13, 1980, when he was assaulted on a Tenderloin street, on the way to pick up his daughter.

There you have it: the pain of the disability is so great as to make other issues -- such as where and under what conditions one lives -- simply pale into insignificance. You'll see this all the time, too, in coverage of disabled people if you watch for it.

For most people, the idea of Those People living in their own homes with things under their own control is simply too much to even fathom.Granted, not every person with a severe disability also has the cognitive and emotional ability to control their lives but you can bet your sweet patootie that far more of them can do it than are believed to be able to do it. And almost none of them (we're speaking statistically here) get that chance. That is to say the powers of society are arrayed against that. Including the SEIU, which could be the solution, if they put on a big national drive themselves to close the institutions where they worked and pressed for in-home services, where they could work as well.

Maybe you readers are too young to remember the hippy-dippy sentiment that "if you're not part of the solution, you're part of the problem." But it's apt here.

Somebody oughta call up some SEIU bigwigs -- again -- and clue 'em in.

Posted by mjohnson at 09:37 AM | Comments (5)

December 13, 2005

More on "The Ringer"

An update to my Friday blog about "The Ringer":

Sunday's New York Times Arts Section had a long article about the making of "The Ringer" which goes into quite a bit of detail about the Farrelly Bros and their use of disability in their filmmaking career. I am almost persuaded:

But Peter Farrelly argues that America needs to understand the inherent humanity of people with intellectual disabilities, and that includes seeing them make jokes, engage in hijinks and dance close to "Full Monty"-style in the shower. "My whole point in making this movie is to make people with mental disabilities accessible, make people know who they are and feel comfortable with them," he said during a recent interview in the brothers' office here.

"If you don't know someone who's mentally challenged, and you meet them, you're afraid of them because you don't know what to expect," he said. "It's not bad. It's just normal. But if you do know them, you're very comfortable."

Patricia E. Bauer, who wrote the piece, has a child with Down syndrome, it says. At one point she quotes Kathleen LeBesco, who chairs the department of communication arts at Marymount Manhattan College, who "published a paper on the Farrellys' "contradictions of freakery" in Disability Studies Quarterly." So I've hotlinked that because you will find it interesting. Especially interesting to me was this paragraph:

A comparative examination of the box office receipts of all seven Farrelly brothers films reveals that their most offensive films -- those that continue to make jokes at the expense of people with disabilities -- were their most profitable ventures, with Dumb and Dumber earning over $127 million in 1994, and There's Something About Mary raking in nearly $177 million in 1998 (www.boxofficeguru.com). In contrast, their attempts to make "message" pictures that sometimes tackle difficult terrain and intervene in politically charged issues -- most notably Shallow Hal and Stuck on You -- produced significantly less revenue (with Hal performing at only the $71 million level in 2001, and the complete numbers on Stuck not yet calculated, but estimated to be in a similar place). Read LeBesco's There's Something About Disabled People: The Contradictions of Freakery in the Films of the Farrelly Brothers.

Finally, this paragraph from the New York Times story should give us pause:

A national survey of 6,000 middle school students found that young people consistently underestimate the abilities of peers who have intellectual disabilities. In addition, the survey found that 67 percent of young people surveyed would not spend time with a student with an intellectual disability if given a choice, and almost 50 percent would not sit next to one on a school bus.

Sometimes New York Times stories can't be viewed without registration. The story is also available here, from the Arizona Republic.

Posted by mjohnson at 04:16 PM | Comments (0)

December 09, 2005

Can movies dispel stereotypes?

I saw "Murderball" -- several times. I haven't seen either "The Ringer" or "39 Pounds of Love," though. Both of those films have just opened in time for the holidays.

If you don't know what the films are about, or what kind of reviews they're getting, go to google news and type in the name of the movie.

"Murderball," loved by the critics, did abysmally at the box office (although producers have hopes it will do better in its DVD version, which was released Nov. 29).

"The Ringer" will definitely do better, but not, I think, for disability reasons. Made by the Farrelly Brothers of non-p.c. "There's Something About Mary" fame, it stars "Jackass" star Johnny Knoxville, which alone will endear it to a certain large moviegoing public.
Producers of disability flicks seem to find themselves on the horns of a dilemma: talk a new game ("Murderball") and achieve little box-office success, or play directly to stereotypes in the hopes of garnering a large audience. That's the route the Special Olympics took when it signed on to be part of "The Ringer."

Back last summer I learned of the Special Olympics' organization's involvement with the film. But I put off writing about it, waiting for the uproar from disability groups. None came that I could hear. Or if it did, it was a very muted roar.

An Associated Press story published yesterday gives the details for all to read:

"The Ringer" sounds like a politically incorrect disaster - but the Special Olympics couldn't be happier....

"Come on, a normal guy against a bunch of feebs? You'll look like Carl freakin' Lewis out there," says the uncle...
[T]he Special Olympics decided "The Ringer" could humanize their athletes and add a new cachet of cool to their organization.

"The risk was that it would further the stereotypes of people with intellectual disabilities as the brunt of jokes rather than the teller of jokes," said Special Olympics Chairman Tim Shriver. "But the payoff was even more valuable."

Oookaayy... the "payoff." And what is that payoff?

The Special Olympics website says that "The Ringer"

tells the Special Olympics story in a new way, challenging destructive stereotypes and negative thinking – especially prevalent among young people – about people with intellectual disabilities. Says Special Olympics Chairman Tim Shriver: "Beyond improving the lives of our athletes on the playing field, a key goal of Special Olympics is to change attitudes of nondisabled young people about people with intellectual disabilities, dispelling negative stereotypes. Humor can be a very effective way to reach young people and the Farrellys are masters of both."

The payoff, then, is that people will go to the movie -- because, after all, the Farrellys are big hits -- and voila! once there, the "stereotypes" will be "dispelled."

The Special O folks are no greats rights activists in my book. To me they've always looked a lot more like smarmy do-gooders than anything else. After all, their bedrock is segregatio.. oops! "special," I mean. They don't rock the boat. So you can see how the Farrellys' pitch might appeal. But if Shriver really thinks that bringing people into a better understanding of "special" people can be achieved through a movie that starts out poking fun at them -- even if the "special" folks in the movie end up having the last laugh -- he's truly naive. Or gullible.

Maybe the group was just suckered into it. (Maybe they're making the big bucks from the movie.)

It's not surprising that Special O execs would be swayed by the Farrellys' promise of 15 minutes of fame -- or maybe even an hour of fame -- and were able to be convinced that the movie would "dispel stereotypes," to use the popular catchphrase. What Shriver & Company see as goals for their clients is not in any sense rights- or equality-oriented. It's more like a kind of warm fuzzy caring feeling, I think. Or, as I say, maybe they're just naive.

What I suspect will happen, though, is that folks who like Farrelly movies will also like this one, but they'll walk away with their stereotypes and un-pc slurs very intact. Oh, it might occur to them if they actually see a "feeb" bagging groceries at their local Kroger that maybe there IS something going on upstairs. But they'll still use "retard" as a slur and think nothing of it.

The kind of change that's needed won't be brought about by a Farrelly Bros. movie, I'm pretty sure.

Some people believe in "public education" or "awareness" as the way to a nondiscriminatory society. They are horrified by lawsuits or protest of any but the meekest, mildest sort. These folks are in ascendency in disability circles nowadays. I think probably Special O's getting in bed with the Farrellys is just a manifestation of that. But it doesn't mean I have to think it's a good idea.

Since last summer when I first heard of the movie "39 Pounds of Love" -- and went to look at its website -- I pigeonholed it in my mind with this issue about "The Ringer" and the Shriver folks. For a long time it wasn't clear to me why I kept doing this. I intended to write about them together all along, and now I'm doing that.

Both, I've beem told, will likley be up for Oscars -- although I'm not sure what that says.

Last summer, I came away from the "39 Pounds" website feeling that although its intentions were probably the best, it came across as a little sappy. Make that a lot sappy.

I know I have trouble today with a lot of the kind of positive-thinking inspirational schlock that seems to pass for mass-market entertainment in all areas, not just disability. So I can put off at least some of the sappiness to the general tenor of the times.

But I think now that it's this quality -- the opposite of what might be termed "tough-minded" -- that has kept the two movies linked in my mind. It seems to me that both the producer/director of "39 Pounds" and the Special O folks are trying very hard to get large numbers of people to become "aware" -- and using the only means they think will work.

But I'm not convinced that the approach will succeed. Even if these movies "succeed" in the "disability awareness" realm, I think the success will not be one that will translate into less discrimination and more access and equality. It might create a warm feeling for awhile, or a "gee-whiz!" jolt of inspiration as the moviegoer realizes that "wow! They are real people!"

But will it do anything to change the fact that parents continue to be hauled before courts and then given reduced sentences for murdering their disabled child? Will it make people want to accommodate a jobseeker whose body may remind them of "39 Pounds" star Ami Ankilewitz or whose actions may remind them of the Special Olympics stars in "The Ringer?" Will it make folks more willing to make their businesses accessible?

I know: that's asking an awful lot of the movies. But I think the issue ought at least to be raised.

Posted by mjohnson at 11:04 AM | Comments (4)

December 07, 2005

California creamin'

Back in the 1970s and 1980s California was considered well ahead of the nation in disability rights. But they seem to be simply wrongheaded on disability stuff a lot of the time nowadays. The backlash against access -- with crips who sue painted as evil lawsuit-hungry terrors -- is just one area in which the anti-disability rights crowd seems to have the upper hand. San Francisco, that alleged bastion of enlightened citizenry, is also spending over half a million dollars to create a new institution for its gimps.

Today seems to be "cream the cripples" day at Voice of San Diego, an alternative nonprofit news site that appears to be rather establishment-driven. Two pieces posted today bash the Americans with Disabilities Act and castigate activists seeking access.

The first Voice story today was sent to me by a reader. Stairway to Trouble is about attorney Ted Pinnock ("Theodore," in the story) who's filing ADA access suits in the small California town of Julian. Wait -- no; he's just "threatening to sue."

The attorney, who has cerebral palsy and uses a wheelchair, recently sent 67 businesses in Julian a letter threatening to sue for their non-compliance with the Americans with Disabilities Act. The act required businesses to offer adequate access to people with disabilities by 1992.

Uh, yeah. 1992. That's coming up on 14 years now, right? You'd think that would be enough time, right?

I love this added bit of information reporter Will Carless gives us: "Pinnock researched each business and wrote all the letters himself."

Does that last sound to you just a teensy weensy bit, uh, paternalistic?

Carless's entire story is about the townspeople's assessment of Pinnock's action:

The San Diego attorney who has become the talk of this small town of apple pies and mom-and-pop stores is referred to by the townspeople at once as a crook, a fraud and other monikers too rude for publication.

Read the rest of the story to learn all the excuses Julian bigwigs give Carless to explain why they're upset: seems they've done a lot already and it's going to cost a lot and two fires around the town have already hurt it so much and ....

In California, "access" has been turned on its head by the likes of Clint Eastwood and cronies, so that it means not access at all. They can't imagine that people who sue for access actually want access. Or, surely it must be an afterthought, after all that money they're going to make:

Pinnock's letters suggest that the businesses contact an attorney and that they start mediation proceedings with his firm, Pinnock & Wakefield APC. The letter offers business owners another option: bring their buildings up to compliance and compensate Pinnock.

See that last? Read the story.

The Voice went the extra mile today, with not one but two anti-ADA pices. The second is an opinion column by "IT consultant and dog lover" David Lynn, who writes about a community group who wants to create a park for dogs to have a place to run.

Of course it was too good to be true. We promptly hit our first roadblock: the city's parks and recreation department returned all of our donation checks informing us that some legislation had come down requiring that any upgrades to city property include compliance with the Americans with Disabilities Act, ADA.

That means wheelchair accessible sidewalks and handicapped parking. We weren't the only group to get hit with this dilemma, as museums had had similar problems.

It's yet another law created with good intentions yet distorted and misapplied...

Earlier in the piece, Lynn notes that the city requires lighting and fencing for the park, but all that evidently makes sense. Access doesn't. Read the full story here.

San Diego's alternative paper isn't the only source of crip creamin' this week in California. This past weekend MSNBC's website posted a piece by San Francisco Business Times reporter Chris Rauber about San Francisco's bizarre (to me, anyhow) push to rebuild its city-run nursing home, Laguna Honda. This time the creaming isn't coming from the reporter, but the SF establishment. Rather than spend money letting Laguna Honda "patients" live on their own, they're rebuilding them a nice new institution. .

Why, one might ask. Rauber offers up a nice quote from an unnamed source -- wonder why they're unnamed? -- that puts it quite succinctly:

"Other cities aren't building nursing homes, they're closing them," said a health-care consultant familiar with the niche, who contends the Laguna Honda rebuild is primarily motivated by a desire to preserve relatively high-paying union positions. "It's not about care. It's about jobs."
Read the whole story: The $600M question: Will S.F. waste its money on Laguna Honda?

Posted by mjohnson at 04:07 PM | Comments (8)

December 06, 2005

No Change in DC Deaths

Six years ago today, Washington Post reporter Katherine Boo, whose investigative piece "Invisible Deaths: The Fatal Neglect of D.C.'s Retarded," had just run the day before, took part in an online chat with Post readers. In March, she'd written the series "Invisible Lives: D.C.'s Troubled System for the Retarded," and it, along with her December story, would win her a Pulitzer Prize.

"When I read your article last spring, I assumed that it meant things would start to change," said one of her readers. "It is heartbreaking and shameful to read 8 months later that almost nothing has happened yet."

Eight months? Try six years. Even a Pulitzer Prize has not forced change.

Last week, the Post's Karlyn Barker reported that 4 deaths had occurred just last year, citing a new quarterly review in a nearly decades-old lawsuit against DC over its "care" of developmentally disabled residents in group homes. "

That was what Boo's series had been about -- 350 "documented cases of abuse and neglect, as well as profiteering, in the city's group homes," and 116 deaths.

Wrote Barker,

The series found that none of the 116 deaths that had occurred in the homes since 1993 had been investigated.

District officials said they have since overhauled the mental retardation agency's services,... In April, the head of mental retardation services and two top aides were replaced in what officials said was a departmental restructuring aimed at speeding efforts to change.

Six years ago, Boo responded to one of her online readers:

Why didn't anything happen? that's a question I ask myself. As for Mayor Williams, he has said he will fully cooperate with the Justice Department probe. He's also said that, as someone misdiagnosed as developmentally disabled in his early years, he's personally committed to fixing the system. We'll see what happens.

I guess six years is long enough to "see."

I keep coming back to one comment from a reader, who wrote, "Sounds like it's all about MONEY for many of these facility owners."

To which Boo responded, "Yes, I think you're talking about a time-honored tradition in programs that serve the poor."

I think about the Sex Slave Group Home in Kansas. It's all the same, I think. It's about money, and people who have so little power that news exposés, even those that win Pulitzer Prizes, don't end up having much effect.

Another reader wrote,

Where is the collective outrage from the "Civil Rights Community" about this National Disgrace? Your paper has aired these startling investigative details since March, and I've not seen nor heard nor read a reaction from civil rights leaders.

"That's a good question," Boo responded, "and I don't know the answer."

Of course, that's a question we've asked at The Rag again and again: why is there so little outrage from traditional rights movements about injustice against disabled people?

And you gotta call neglect that ends in death "injustice." But we don't call it that. As a society, we don't. Why, I don't know. But we don't.

We have movements against the war, but nothing of that sort against the kinds of outrages committed against disabled people -- including, if not outright killing them, certainly doing nothing to stop their deaths.

The answer to why we don't, I always think, has to do with the covert nature of the evil done to disabled people. Because it appears the injuries and deaths are not the result of overt hate, people do not rise up in outrage.

Is that it? I wonder. Whether it happens to you because of hate or because of neglect, though, in the end you're just as dead. Dead is dead. Or are some deaths more important for us to be upset about than others?

I think we know the answer to that, and it's not a nice answer.

Where deaths can be seen to be the result of hate -- as with lynchings -- it can eventually stir people to force change.

But no one hates the poor disabled people in the group homes, right?

Posted by mjohnson at 10:01 AM | Comments (1)

December 02, 2005

The 4Ws

Soon the Supremes will rule on Gonzales v. Oregon, the case about Oregon's right-to-die law.

And so I'm back to blogging about the issue, as I threatened to do a month or so ago.

Disability rights groups who oppose Oregon's "Death with Dignity" law-- and who have as a result sided with the decided anti-rights Bush Administration (Gonzales) because the Administration opposes the law -- have come under fire from others in the movement. And the rancor became public late last summer.

It's rare that disagreements within disability rights circles ever draw the attention of the larger society, so it was interesting that this one did.

Awhile back I talked to Professor Lennard Davis, the UIC disability studies scholar who'd gone on NPR with his frustration at the movement's anti assisted suicide wing.

But for me the issue hasn't ended with listing Prof. Davis's concerns.

And so I've been thinking about the issue, thinking about what Lenny Davis says, and about what Prof. Paul Longmore says on the other side of the debate. I'll devote a full blog entry to Prof Longmore's thinking in a little bit.

But today I want to blog a little bit about a way in, a way of understanding this issue in a larger context than simply the facts about Oregon's law (about which more in a later blog, also).

Any minute the Supremes could rule. Or they could put it off till late next spring, as they sometimes do with big controversial decisions.

I have my thoughts as to how they will rule, as does everyone, but this isn't a blog about point spreads, so I'll leave that alone.

The safe thing to say is that no matter how they rule the issue isn't going away, any more than the abortion "debate" would go away if the Supremes overturned Roe v. Wade.

Both abortion and assisted suicide are similar in that they are issues that have to do with our culture rather than our laws. And so legal maneuverings one way or another simply form the field upon which the skirmishes occur. At least that's how it seems to me.

In looking for a way in, the thing I find myself returning to is something I heard first from Diane Coleman, head of Not Dead Yet. Nearly a decade ago, I heard her refer to the people driving the right-to-die movement as the "4Ws": the "white, worried, well-off well." I don't know if she coined the term but it's stuck with me all this time because it's so apt.

The demographic which continues to drive the right-to-die movement is made up of people who are largely white middle class, certainly liberal ("progressive," as we call them in progressive circles -- go figure!). The people behind the laws are for the most part -- no, not entirely, but for the most part -- people who as yet are healthy, without disabilities, and nowhere near death.

But they worry. That's the 4th "W." The worry about an "undignified end." They worry they'll get cancer and "the pain will be unbearable." They say they worry about being "hooked to machines" in a big impersonal hospital, all but dead but with the medical rules not allowing them to be unhooked. They worry.

OK, you say -- but so what? Why does the fact that 4Ws are behind this issue seem so significant? The significance, for me, is that the breakdown seems fairly stark: they're for it, and other groups are against it.

The disability rights movement has railed publicly and privately about how this issue is framed by the media as the right to die vs the "right to life" groups, leaving out disability rights opposition as its own distinct voice. But the public framing of this debate leaves out a bunch of other group, too. Surveys show that African-Americans tend to oppose legalization of assisted suicide. So do Hispanic groups. So to people in lower income levels.

Taken together, that's an awful lot of different kinds of demographics. It's really simplistic to say that these folks are all driven by conservative and/or religious values.

I think there's something different driving them: a lack of trust in the U.S. healthcare establishment. Even more broadly: I think it's driven by a fear that legalization of assisted suicide will mean it could somehow be used against them. Somehow. Even if not through this particular law, or that one. Even if it can't be proven. Just because it's an inchoate fear doesn't mean it's not a valid one.

Or maybe it's not valid. But to me that's not really the point. That their fears may be unrealistic -- as people like Prof. Davis have suggested -- does not mean that they're not real fears. Another way of saying this: reassurances that x or y will not happen, or that the laws have safeguards, does nothing to mollify such fears. The fear is really about a lack of trust in the establishment, a real -- and valid -- knowledge that they are for the most part powerless against "the establishment." Minorities and the poor tend to view things this way. And it seems a brief look at history is more than enough to show us why.

But the 4Ws on the other side are also driven by fear. They fear, they say, the end of life "tethered to a machine." They fear loss of autonomy, they say.

That both sides are operating out of fear interests me a lot. It makes me start thinking about the role of the fear itself.

More later.

Posted by mjohnson at 09:09 AM | Comments (12)