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October 31, 2005

Alito and his 'disturbing disability-related cases'

Nov. 5 update: I've now posted Claudia Center's descriptions of 20+ Alito disablity-reiated rulings here.

Following this morning's announcement that George W. Bush had nominated Third Circuit Court of Appeals Judge Samuel A. Alito to the U.S. Supreme Court after the Harriet Miers debacle, ADA Watch sent out an email. The email led with a quote from Wade Henderson of the Leadership Conference on Civil Rights:

Caving to the will of the radical right, President Bush has nominated a judicial activist with a record hostile to civil rights, individual rights, and the rights of women. If confirmed, Judge Samuel Alito -- affectionately called "Scalito" by conservatives -- would destroy the delicate balance Sandra Day O'Connor has brought to the Supreme Court and swing the Court far to the right.

OK. No mention of disability rights there, though -- as usual, we might add.

ADAWatch's email continues,

In addition to a number of disturbing disability-related cases, Alito is being described as a leader of the radical right-wing legal movement to prevent the federal government from enforcing civil rights protections. He has also claimed that the federal government cannot fully apply the Family and Medical Leave Act to state employees. If confirmed, many believe that Alito could be a threat to the rights and liberties of Americans for a generation or more.

ADA Watch's email -- unfortunately not on its website and able to be linked to -- has information from attorney Claudia Center about disability-related rulings Alito has participated in. It's too much legalese for me to understand so I can't really explain much here. I hope someone -- ADA Watch, ideally, but hopefully other groups as well -- will quickly post on websites some plain-language information about this judge.

Here are a few of the things from Center's material that do seem clear to non-lawyers:

In 1996, in the case Kelly v. Drexel Univ. Judge Alito joined in a unanimous opinion that basically said Kelly -- who had moderate difficulty walking and climbing stairs due to hip injury -- had no right to file a suit under the Americans with Disabilities Act: "While we are not unfeeling with respect to Kelly’s condition, still we simply cannot regard it as a disability under the ADA as it does not substantially limit him in the relevant major life activity, walking."

This reminds me of the kind of stuff Sandra Day O'Connor ruled.

From Claudia Center:

An unpublished case called Katekovich v. Team Rent-a-Car [decided by the Third Circuit Court of Appeals in 2002] is perhaps the worst disability rights decision associated with Judge Alito. ... The employee had sleep disorders and depression, informed her supervisors, and entered the hospital. Three weeks after she began her leave of absence, and one week after her release from the hospital, the plaintiff was terminated.

The Third Circuit dismissed the case saying the woman had no right to sue as she wasn't "disabled."

There's also a case where Temple University evidently refused to provide a "handicapped parking space" and Alito said the University's action was not a "failure to accommodate" under the ADA.

There are a lot more cases Alito ruled on -- one of the good things about this nominee -- if "good" is the right word -- is that there's lots to look at in his record.

We hope ADA Watch and other groups are doing just that.

Some good news from Penny Richards, who tells us that the blog Think Progress actually mentioned Alito's position on disability rights issues. Read it here. Thanks to Penny for alerting us! We'll be watching, as usual, to see how much of the public discussion about Alito includes his ideas about disability rights.

Posted by mjohnson at 12:02 PM | Comments (3)

October 28, 2005

The right to die and disability rights: an interview with Lennard Davis

On Oct. 5, the Supreme Court heard arguments in the case Gonzales v. Oregon, a case brought by the Bush administration that seeks to invalidate Oregon's first-in-the-nation "Death with Dignity" Law. The Administration argues that physician-assisted suicide violates the federal Controlled Substances Act on grounds that suicide is not a "legitimate medical purpose."

The case has split the disability studies movement, just as the right to die, like the Terri Schiavo debacle, continues to split the disability rights movement.

Arguments have raged fast and furious on the academic listservs over the past month.

Today begins the first of a series of blog entries I'll return to in coming months about the right to die and the disability rights movement.

At the end of September I interviewed Diane Coleman, head of Not Dead Yet, the activist disability rights group that has spearheaded disability rights opposition to right-to-die laws. Not Dead Yet filed a friend-of-the-court brief siding with the Bush Administration. Although a bunch of other national disability rights groups signed onto the brief, one group who had signed on decided to remove itself from the brief. That group was the Society for Disability Studies, and although the reasons they removed themselves are complex, one of the reasons was Lennard Davis.

Davis is a proponent of physician-assisted suicide, and he's a biggie in disability studies circles. A Professor of English at the University of Illinois at Chicago, he's also Professor of Disability and Human Development in the School of Applied Health Sciences and a Professor of Medical Education in the Medical School

I don't think it's overstating things to say that Lennard Davis is personally horrified that the disability rights movement appears to be aligned in the public's mind with, as he says, the "Right to Life." Those reasons, it seems to me when I talked to him, are based as much in a gut reaction against "The Right" as anything -- although he has his arguments lined up as well. He firmly believes that physician assisted suicide -- as espoused in the Oregon law -- is not the same as the "euthanasia" that many disability rights activists fear. And he thinks there's insufficient documentation to support the fears that make groups like Not Dead Yet align with the Bushites on this one.

Shortly after I'd posted my interviews with Diane Coleman (here and here), Lenny Davis suggested I interview him for another side of things. Fair enough, I said.

What follows is, I think, a fairly faithful rendition of the things he told me. I had him check the quotes I was going to use. I was interested in interviewing him partly because Lenny Davis is one of the few disability studies scholars who has begun to use the media -- in fact it was his commentary on NPR -- saying that "disability activists and scholars have come to see physician-assisted suicide as an assault on the disabled. The fundamental error they've made is that they have equated disability with dying" -- that got lots of folks in the disability movement in a tizzy. And it didn't help that he also talked to the folks at Inside Higher Ed and expounded even more about what those editors chose to call a "rift" in disability studies circles over the issue.

I was also interested in interviewing him because I didn't believe that a truly rational, disability-rights-based case could be made for supporting physician-assisted suicide, and I wanted to see if his arguments could convince me.

"I'm a lifelong Leftist," Davis told me. "I've happily described myself as a Marxist in the past -- that's my orientation; from a working-class family, first-generation educated -- a family of Deaf people.

"The transition I made from Leftist academic to disability studies scholar has felt good in the same way.

"I don't want to be associated with something that feels so regressive about all the things that are part of the Leftist tradition," he went on, moving now into the reasons he was upset disability rights activists siding with the Administration against Oregon. "It makes me feel bad. I don't want disability studies to be like this."

It seemed to me that he was extremely concerned about the public appearance of what the disability rights leadership appeared to have done. "I don't think that being in disability studies means you have to be for the same kinds of things as [the nation's] rightwing agenda," he went on. But he questioned the view of some in the movement that temporary alliances with the Right made sense in this case -- something he characterized as "I don't agree with The Right, but I'm just temporarily making an alliance."

That simply didn't work for Davis. "Substitute 'Nazi' for 'Right,'" as he put it.

"Not Dead Yet is willing to do whatever it takes to stop any physician-assisted suicide law in the U.S.," Davis continued. "I think Stephen Drake and Diane Coleman [the main players in Not Dead Yet] are very aware of Left-Right politics, and they feel in their minds that they have made a clear distinction between the Right to Life and the Not Dead Yet position. But the rest of the world is not going to notice the distinction.

The producer at National Public Radio who worked with Davis on his commentary "thinks that Not Dead Yet is aligned with Right to Life. It's like trying to make the distinction between the Anarchists and the Communists in the Spanish Civil War. Or like CORE and SNCC during the civil-rights days: who's gonna know the distinction?"

It was painful for me to hear him say this -- for it was a feeling I'd often had myself. No matter how much effort Not Dead Yet and others put into distinguishing the disability rights position from that of The Right, the distinction simply got lost in the public's mind, it seemed to me.

I had, however, felt that in the coverage of the Gonzales v. Oregon case, which had occured at the time of the oral arguments before the Court on Oct. 5, there had finally begun to be some glimmer in the news about the disability rights position. Not Dead Yet had more interviews. The media seemed to sense that the players in the case were Not Dead Yet and Compassion and Choice -- rather than simply the right-to-die group and some Christian Right to Life group or other. But that was my take on it. And I also knew that part of the reason reporters had sought out Not Dead Yet this time was because they were appearing to take the Administration's position. A curiously unexpected move is always of interest to the media.


Davis went on: "Let us say that everyone is aware that disability rights activists are progressives. Let's say the public 'got that.' The problem is still," he said, "that the action of Not Dead Yet supports the action taken by [DOJ Sec.] Gonzales, where a single federal official has countermanded a law passed by the people of Oregon."

The position Not Dead Yet took, in other words, supports a right-wing Adminstration, who is taking its action for right-wing reasons. At least that's how I took Davis to mean it.

"There's a short-term / long-term problem with this alignment: The Not Dead Yet position is that 'it's OK; we can make alliances with the Right.' But in fact the agenda of the Right is to erode the right to privacy.

"Every time you encourage one form -- any form -- of judicial action on the right to privacy, you're weakening it, and we have to be very careful when we choose short-term alliances and strategies. One of the key issues of the right to privacy for people with disabilities is that you don't want your medical records available to employers, insurance companies and so on."

"Most disability activists support a liberal agenda; support a right to choice," Davis said. And it seemed to me that he was frustrated -- more than frustrated, I guess, angry. People who took the position that Not Dead Yet had taken on Gonzales v. Oregon, he said, had to recognize "which laws actually will end up getting strengthened: you are supporting a conservative impulse on the part of Gonzales to overturn a liberal agenda by fiat. You are feeding the beast.

"The very people you are giving strength and support to -- you are giving them strength to overturn Roe v. Wade -- which is not about abortion, but the right to privacy."

So. It seemed to me that Davis saw the fight against physician-assisted suicide as part of a much broader rightwing agenda to weaken or destroy the right to privacy -- and that any position taken in support of Gonzales over Oregon was playing right into that agenda.

"The downside to taking the strong stance that Not Dead Yet takes is that it associates people with disabilities with a rightwing agenda. Are they going to be marching again tomorrow with people against gay marriage? Against abortion? Against the right to privacy?"

Something else concerned him, he said: Assuming other laws get passed -- and other laws will get passed, he believed -- the problem with simply being "against" physician-assisted suicide laws was that "the people with disabilities won't be involved in making the laws, because they're against them."

This got back to the age-old question: Do you refuse to participate in compromise, or do you take a tactical position that trying to make something you hate into something you can tolerate is better than nothing?

But, I thought, the people who saw things differently than Lennard Davis would say that this was entirely the wrong question.

It was clear to me that Davis, like many liberals and lefties, personally supported the idea of a "right to die."

"I have a total terror of death," he told me. "The last thing I'd choose is assisted suicide. My advance directive says, 'keep in the feeding tube!' I've been this way since childhood. But I know that if -- when -- that time comes, I know that, emotionally, it would really help me if I could have that pill in my pocket -- just knowing that it's there would help me get through. I probably wouldn't even take it, but if the pain got bad... I've seen people die peacefully, but we all know that's not always true, and I'd like to know that in a reasonable civil society that this option was available, rather than having my friend having to put a plastic bag over my head or shoot me. And I think most people feel that."

There were reasons for having assisted suicide legalized, he said. "One reason is to make you feel part of an ethical and civic society. Killing yourself with drugs is what assisted suicide means. And the only legal way to get drugs is through doctors, so doctors have to be involved.

"The other ways of committing suicide are horrible."

He describes to me a friend who witnessed his father's self-inflicted death, and the memory of that stays with him. "What a traumatic thing! If you crash your car, if you put a plastic bag over your head, you can't really be with your friends and depart -- the only way you can do that is if you have a drug that will let you do that. Yes, you can still get the drug illegally, but then you or your friends are doing something illegal.

"It's bad enough to help somebody end their life without having the guilt of doing something illegal. And the other thing that nobody talks about is that there's no insurance benefit in the case of suicide. The Oregon law provides for having the insurance go to the heirs, because nobody is doing anything illegal. In other states they could be arrested. But in Oregon the surviving spouse can get the insurance money."

One could argue that Lennard Davis was simply espousing the liberal party line on assisted suicide. But his "rift" with other disability studies scholars has other components. It seems he simply doesn't believe the arguments that the disability activists opposed to assisted suicide present. And the basis of his skepticism, it seemed to me, was that he feels they have provided insufficient (or even inaccurate) documentation for the position they hold.

To scholars, bad documentation is a big deal.

For him to change his mind on the Oregon law, he told me, "you'd have to be able to prove and document that this law is definitely killing people with disabilities. Then, yeah, I'd change my opinion.

"But what I feel is that the arguments being made on the side of those against physician-assisted suicide are coming out of fear. I can't say that the fear is invalid -- the emotion is valid -- but those making it are making it on the basis of fear rather than on the basis of documentation. How much of it is verifiable, and how much of it is based on the 'oh, I fear it will...'?

"The documentation I've seen doesn't tell us a lot. It says that there are problems with the enforcement and reporting end of the Oregon law. I'd agree with that. But there is absolutely no clear and overwhelming documentation that people with disabilities are being killed because of the law."

"I've tried to go through the documentation on the Not Dead Yet website with an open mind. I've tried to check the sources. And you know and I know that you can cite an article out of context. But if you look at the articles that are out there, the picture is not clear" -- not in the way that Not Dead Yet members suggest it is, he said.

Lacking convincing documentation, he said, he felt that the damage was as great to the disability rights movement by their stance on the topic as was the danger of people with disabilities actually being killed as a result of right-to-die laws. Because he just didn't see that happening, he said.

One of the points made by disability rights activists opposed to physician-assisted suicide is that there's no way to distinguish between "terminally ill" people and people with disabilities -- or, more precisely, that no definition works to prevent people with disabilities from being encouraged to kill themselves. "The law won't stop at terminally ill people," is the way this is most often put.

But Davis doesn't buy that argument.

"It's a red herring," he said. "The Oregon law is for dying people. The timeline is not important. It's a quibble; an obfuscation. The law is for people who are about to die."

It's Davis's belief those in disability studies who oppose physician-assisted suicide had their consciousness of the issue formed in the 1980s around some very well-publicized "right to die" cases that involved severely disabled people -- Elizabeth Bouvia was one. "Their foundational consciousness was formed around this very basic fight -- that euthanasia will in some cases lead to disabled people wanting to kill themselves or wanting to be killed But those people with disabilities had no supports, no accommodations, no independent living."

Because of that history, he says, disability rights opponents of Oregon's law say "it's clear to us that this is tied up with society's attitudes toward people with disabilities [and] we never want that to happen again."

"It's hard for people to say, 'wait a minute: Assisted suicide is actually different from this.'"

The Oregon law, he stresses, is about "people with less than 6 months to live.

"I think it's important for people to know what the law says: that you have to make a request [for lethal medication] in writing to a doctor, and have the request witnessed by two people, one of whom can't benefit from your death. Then two doctors have to OK it. You have to wait 15 days, then apply again. The doctor then has to screen you for depression and to treat you if in fact you do have depression. Then the doctor has to write a prescription and send it to a pharmacy that's not part of the hospital [where the doctor practices]. Then somebody else has to go and get the prescription.

"The doctor is no longer in the picture.

"You can do with the drug whatever you want. People think 'physician-assisted' means the doctor is giving you the drug -- administering it to you right there. In fact, the doctor under the law cannot administer the drug."

He comes back to stress once again that "I am only for assisted suicide for people diagnosed with a certain amount of time to live -- 6, 9, 12 months -- whatever. Just dying people."

"The fear is that these laws are are going to get rid of people with disabilities -- the most fragile, the most helpless -- a eugenics argument. But if you look at who's choosing assisted suicide, it turns out to be not that group of people..

"So, assuming the law kind of works, my position is: what's the best position for people with disabilities to take? To oppose the law at all costs? Or isn't it wiser to work to build in better safeguards? I know the argument is that you can't do that. But even if the Supreme Court rules against the Oregon law, there will be other laws. It would be best to make the law have safeguards, and work so that the people who become disabled will have some way to deal with their fears of being disabled."

"Assuming the law kind of works, isn't it wiser to work to build in safeguards?" That's what sticks in my mind as I hang up the phone from my talk with Lenny Davis. And, "If the Supreme Court rules against the Oregon law, there will be other laws...."

He's right about that one, for sure. We are just starting our national dance with the right to die.

I did not check Lennard Davis's description of what the Oregon law says against the law itself. I took him at his word. In that sense I am as bad as those he criticizes for not checking facts, not being firm about documentation. But this interview isn't the end of things for me. I've been trolling around and heard other folks; I also have my own thoughts. But rather than exhaust you all at once, I'll exhaust you in little pieces: I'm going to keep returning to this issue. I hope I'll get down most of what I want to say before the Supreme Court rules on Gonzales v. Oregon. That should be in early 2006, say court-watchers. Of course the Supremes could rule any day.

On the other hand, what they rule is not going to make this issue go away. Physician-assisted suicide promises to become as heated and unresolvable a debate in this nation as abortion. Maybe moreso, as our nation ages.

Today, it seems rather simple, when I listen to Professor Davis: disability rights opponents are sincere but wrong about the Oregon law.

But next I'll be asking: what is it that they are wrong about? Are they simply afraid, with nothing more than wisps to base those fears on?

Posted by mjohnson at 12:43 PM | Comments (2)

'And so it begins'

On the heels of the leaked Wal-Mart internal memo outlining ways the company could "discourage unhealthy job applicants" and make sure current employees are "healthy" comes The New York Times's editorial today praising the behemoth retailer:

In their drive for a healthier and therefore cheaper work force, the drafters recommend adding physical activity, like rounding up shopping carts, for all employees, simply to discourage the weak and the sick from seeking jobs there. But it can also be surprisingly forward-thinking...We cannot blindly throw out the good along with the bad as we sift through the retailer's dirty laundry.

Read the editorial here if you can get onto the NYT website.

"And so it begins," says Ingrid Tischer in an email to Ragged Edge. On Tuesday, Tischer had speculated, in response to the news of the memo, that "Some people, even progressives, may react by citing the memo's 'bold steps' language about providing better coverage and choices for 'healthy' employees. Don't fall for it. Allowing one community to benefit through discrimination against another is unacceptable."

Yep. And so it begins, indeed: The enlightened New York Times, taking the side of Wal-Mart against "the unhealthy." Seems this kind of thing used to be called "blaming the victim." When it comes to disability, the Times is good at that.

I have to say I'm not surprised about the Times. Their editorial board seems singularly disinterested in anything that smacks of disability rights -- they have generally taken the line that people who are "handicapped" (they still like to use the term) are in some way to blame for it and in any case need to suck it up and get on with their lives without bothering society with their whining. Today's editorial fits nicely into that track.

And how do you like their "We cannot blindly throw out the good along with the bad..."?

Using "blind" to mean "bad": someday I'm going to blog about that.

Posted by mjohnson at 06:36 AM | Comments (2)

October 26, 2005

Ah yes: 'hire the handicapped" month...

We put this up in our News Department but I wanted to note it here as well, and add a comment:

An internal Wal-Mart memo suggests that the company "discourage unhealthy job applicant" in order to hold down insurance costs. The presence of the memo has been reported by CNN, the New York Times and in other news outlets.

From the New York Times:

In the memorandum, M. Susan Chambers, Wal-Mart's executive vice president for benefits, also recommends reducing 401(k) contributions and wooing younger, and presumably healthier, workers by offering education benefits. The memo voices concern that workers with seven years' seniority earn more than workers with one year's seniority, but are no more productive.

To discourage unhealthy job applicants, Ms. Chambers suggests that Wal-Mart arrange for "all jobs to include some physical activity (e.g., all cashiers do some cart-gathering)."

Well, I suppose this is a fitting close to the traditional "hire the handicapped" month of October. Or, "hire the handicapped - NOT." For another sobering view of what's happening on the employment front for disabled people, read our CloserLook story on the two federal laws passed years ago to help disabled people with jobs. The programs are helping, a Senate committee learned last week: they're helping the program's executives get rich. For disabled people, though, it's sheltered workshop time. That story's here.

View the PDF of the memo at WalMartWatch.

A 10/28 New York Times editorial praises Wal-Mart's thinking. More here.

Posted by mjohnson at 04:19 PM | Comments (2)

October 25, 2005

Rosa Parks and access to buses: a little-known piece of the story

Rosa Parks, icon of the civil rights movement, has died. The news is full of her passing. Ms. Parks, 92 when she died yesterday, is known far and wide as the African-American woman who refused to give up her seat to move to the "colored" section in the back of a Montgomery, Alabama public bus. She was arrested, sparking the Montgomery bus boycott, which many see as the first time the civil rights movement for African Americans (who we then called "Negroes") really took hold in the public consciousness. Oddly enough, I mentioned the Montgomery bus boycott in my blog entry yesterday.

The civil rights movement was not new then -- it was just then that it began to gain real national attention and got fixed in folks' minds.

Rosa Parks' act too got fixed in people's minds. Less well known is the fact that Mrs. Parks did not just "happen" to be tired that day -- her act of civil disobedience had been carefully planned. She was seen as the ideal person to be arrested for the desegregation case that civil rights legal organizers had wanted to bring for a while. Parks was an organizer herself.

You'll be hearing all about this, I'm sure, in the many accounts that will now come in the wake of her passing. Go to google news if you want to find out more about this aspect of Mrs. Parks's action.

I recall a different Rosa Parks. This Rosa Parks, in Detroit where she lived in the later years of her life, was contacted by ADAPT when they were in full flush of their national fight to ride the public's buses. It was 1986 and ADAPT, as was the group's practice, had come to Detroit to hassle the American Public Transit Association, which was holding its big trade convention there.

ADAPT had asked Rosa Parks to lead their parade through downtown Detroit. For years ADAPT activists had been using Rosa Parks as their icon as well -- often appearing at protests with name tags reading "My name is Rosa Parks" -- trying to make the public connect their protest with the civil rights movement. "A civil rights movement was born when people refused to ride at the back of the bus. We can't even get on the bus," was an often-quoted soundbite from ADAPT in those days.

Rosa Parks failed to appear at ADAPT's press conference and march October 5.

In a letter to ADAPT two days before the march, Parks cited "the traumatic manner in which you choose to dramatize disabled Americans' lack of access to public transit" as her reason for backing out. She didn't want to "embarrass the city's guest and cripple the city's present transportation system," she said. (From the Advocado Press book To Ride The Public's Buses.)

CBS News's Ed Bradley disputed that Mrs. Parks had ever promised to appear.

The whole thing was peculiar. But it has stuck with me all these years, and when I think of Rosa Parks, that, mostly, is what I remember.

Posted by mjohnson at 12:22 PM | Comments (4)

October 24, 2005

Jarek Molski's problem -- and I don't mean access

I've been sent a link to a story which ran in The Los Angeles Times magazine several Sundays ago -- and it surprises and saddens me, now that I see it, that more people didn't alert me to it. Probably I should have found it myself.

The article is -- once again -- about Jarek Molski, the man who has sued hundreds of California businesses for failing to obey state access laws and the Americans with Disability Act's requirements for access. Molski has become a legend -- and not a good one. He is uniformly despised by business, which of course isn't surprising. Media accounts paint him as less interested in access than in lining his pockets with damage awards, which are allowed by California law. But he's also despised by a good number of crips, who think his tactics are hurting the image of disabled people.

Note that so far I haven't provided any links yet to this or other stories. I will -- in a minute. I want to get my two cents' worth in first.

I've written a couple of long stories (here and here) about the access fight in California, and Molski has figured in both. He's a lightning-rod figure. But I've never interviewed him.

Molski doesn't give interviews, his attorney tells me.

It took me forever to get hold of the attorney -- at the time Thomas Frankovich (Molski's had -- and has -- several attorneys). I got my shot at talking to Frankovich exactly once. He came across as gruff and disinterested in really giving me the time of day, although I did get some very good stuff from him when we finally connected. When I called him back to check facts, to check quotes, he never returned my calls.

The Molski Problem to me points up one of the biggest problems we have with our movement -- and it's a theme I return to again and again like a Johnny One Note: We have a big -- humongous -- problem in dealing with media. With public relations. With whatever you want to call it.

I have always thought -- and this L. A. Times story simply confirms it -- that most of the bad press access activists get in California is due to their reluctance to talk to reporters. Molski leads the pack in being media-shy. Which is odd, because in not talking to the media he ends up with a far worse reputation than if he'd talk to them. At least that's how I see it.

If Molski and Frankovich treat other reporters the way they treated me there's no wonder they don't get good press.

Yet one of the things Frankovich said to me the day I interviewed him has remained lodged in my mind as perhaps the most cogent thing anyone has ever said to me, anywhere, about the public-relations problem crips have with access. The quote pops up in my mind whenever I think of the fight over access.

"If every person who's run into an access problem filed a suit, we wouldn't have this problem (with people picking on Molski)," he told me. It would be like the Montgomery bus boycott. There'd be thousands of people, little people, filing suits every day. It would be a national movement.

"There isn't a single disabled person who hasn't had the problems" Jarek Molski has had with access, Frankovich continued. "But most of them do nothing. They don't sue; they don't even complain. So when someone like my client files all these suits, naturally he's a lightning rod."

I can't remember when I ever had someone so neatly sum up the problem.

"If every disabled person who had an access problem sued...."

Can you imagine what it would be like in this country? The story wouldn't be on the numbers of suits filed but on the numbers -- the sheer astonishing numbers -- of ordinary citizens who were doing exactly what the federal Americans with Disabilities Act forced them to do when confronted with a lack of access: file a suit.

Better minds than mine have noted that one of the reasons the ADA's Title 3 (the title related to nondiscrimination in commercial entities -- ie access to businesses) has that "file a suit" enforcement language is because those in Congress figured that most crips wouldn't in fact be brave enough to file suits, and so businesses wouldn't have too much to worry about. They were astute. The results have been very sad.

And Molski's vilification is part of that.

Not too long ago a local quad and I were talking about one of the topics that I return to again and again: why more crips don't sue over the lack of access. "Mary," he told me, "if I sued -- or filed a complaint, or even if I made a fuss -- about every access problem I run into, I'd be doing absolutely nothing else with my life. And I have a job to go do, and a life to live. I can't -- I simply can't -- focus on the problems or I'd get nothing else done."

What did he do when he came up against a place he couldn't get into, a business that had no place for him to park his van and open up the lift?"I just go elsewhere." He pretty much knew his routes in the community; the places he could get into and the places he couldn't -- of those places he was even interested in frequenting. He did a lot in the suburbs -- he lived in the suburbs after all -- newer chain restaurants were generally accessible. He knew places to park. He didn't explore all that much.

That was the life of most crips.

"After consulting with Frankovich, [Molski] declined to be interviewed for this article," wrote freelancer Matthew Heller in the L. A. Times magazine story of Oct. 2. If I'd been the L. A. Times's magazine editor, I don't think I'd have run a story about a man without interviewing him. The L. A. Times is a big paper, unlike the Ragged Edge -- we're expected to cut corners. And we can also expect our readers to have a bit more knowledge of the facts than the average Times reader, our readers being mostly disability rights activists (at least it appears that they are).

But Heller's story did run. I found nothing new in it. It was more of the spy-vs-spy kind of story that this Molski vs. business story always devolves to. Read it (yes, now I will give you the link) and if you see anything new, please leave a comment about that.

A letter in response to the L. A. Times story appeared yesterday. The letter is online, but I thought I'd just quote it -- because, for me, what the letterwriter says -- along with Frankovich's quote -- sum up the entirety of the "Molski problem."

Ms. A. Rey wrote,

Jarek Molski certainly must be annoying to businesses as his intent seems to be to make money rather than make it easier for the disabled (Rolling Thunder," by Matthew Heller, Oct. 2). However, I can understand his anger. I just spent the last three years pushing my husband around in a wheelchair, and I noticed that there are far too many businesses that don't comply with the Americans With Disabilities Act.

Can those businesses understand how degrading it is to a man or woman who can't use the bathroom when they absolutely have to? Not only because the bathroom isn't accessible, but also because the door is so heavy that they can't push it open or they can't make it around the corners to the handicap stall. For every heavy breath and anxiety-ridden minute it took to get my husband into a medical appointment, store or restaurant, I cursed those responsible. I say sue them all! You lost our business.

Note: Ms Rey did not say that she and her husband are themselves filing any suits. But they ought to.

Posted by mjohnson at 11:13 AM | Comments (7)

October 20, 2005

The key in the lock of the lift

One of those seemingly tiny things comes into my email box, and I find myself thinking more than I should, perhaps, about it:

Activists in California have been dealing with a business owner who apparently is reluctant to leave a key inserted into the lock of a wheelchair lift. The lift is evidently the way one accesses this business -- those facts are unclear. The issue, for this business owner, evidently, is that he worries someone is going to steal the key in the lock of the lift.

A wheelchair user writes, "we are ready to sue, in small claims court, a business owner who refuses to put [the] key in the key slot, turn it on, and leave it in the key slot during business hours, as mandated by California law."

That was interesting to us. A law requires the key be left in the slot?

"Title 24 specifies that lifts must be self operating and open at all times during business hours," writes activist Ruthee Goldkorn.

Noel Neudeck, whose mass emails on disability issues in California are well known to advocates there,sends the citation: California Code of Regulations, Sub Chapter 6. Elevator Safety Orders. Rule Number 3094.2 (r). Sure enough.

(r) The vertical platform (wheelchair) lift may be locked for security reasons but shall remain unlocked during normal business hours.

I think about all this in relation to a blog entry I made last summer, about a friend, a wheelchair user being inducted into the Kentucky Civil Rights Hall of Fame, who found, when she got to the induction ceremony that the lift was locked, turned off, and the key who-knows-where. She'd felt humiliated, angered, embarrassed.

Goldkorn writes from California that lifts

are to be on during business hours. We do not care about his phobia of the key being stolen!!!!! We care we cannot access the business. Period.

Reading the actual regulation reminds one about the old adage about making laws and sausages -- it's a messy business.

On the one hand the regulation does say -- at the very bottom (as though it were an amendment, which maybe it was) -- that

(r) The vertical platform (wheelchair) lift may be locked for security reasons but shall remain unlocked during normal business hours.

But that comes at the very end. Way up above, at (g), there's a discussion about how the lifts have to also have a "manual lowering device":

The lowering device is for use by others to lower the lift to the lower landing should the lift downward motion become impaired.

This device -- I'll spare you the legalese -- can have a "lockable cover" and that cover must be "kept locked" although "the key shall be available on the premises during normal business hours under the control of an authorized person."

You can see how people become confused by these things.

I wonder what kind of a lift was used at the auditorium in Kentucky? I wonder if Kentucky has such a regulation? I wonder if anybody's ever bothered to check?

One thing you gotta say about those CA access activists: they're generally on top of things.

Posted by mjohnson at 10:48 AM | Comments (2)

October 18, 2005

Everybody's fav whipping boy

It is so tiring to come upon Thomas Sowell's screed against disability rights. Doesn't anything ever change?

Sowell, the African-American arch-conservative pundit from Stanford University's Hoover Institution, let loose with a string of venom against everything from ... let's see... disabled golfers insisting on accessible golf carts, to Sue LoTempio's New York Times op-ed on Madison Square Gardens' failure to provide wheelchair seating that allowed a view of the performers... since Ragged Edge had a bead on both those stories, we figured we'd see what Sowell was up to.

What he's up to is just more of the same old same old:

There was a time when people would have said that the hotel is not responsible for these golfers being in wheelchairs and therefore it has no obligation to supply special carts to help their scores on the links. But that was before the Americans with Disabilities Act, under which the hotel is being sued.

If the government wanted to help the disabled, it could have spent its own tax money to do so. Instead, it passed the ADA, which created a right to sue private institutions, to force them to spend money to solve the problems of those with special problems, whether serious or frivolous. (The Politics of Spoiled Brats, Oct. 14 Contra-Costa Times)

Yeah yeah.

What amazes me is that this kind of crap continues to be published with so very little -- so very very little -- rebuttal.

I've said it before and I will say it again and again and again: I understand that there are folks (like Sowell) who hate disability rights. And I know they have a right to spew their poison under the First Amendment's protection of free expression.

What I don't understand is why there is so very very little rebuttal?

Recall the kind of outrage William Bennett met with for his recent remark about aborting African-American fetuses and you'll get an idea of the kind of outrage that can follow in the wake of offensive bigoted free expression. At last count, Google News was serving up almost 2,000 stories about it. Even yesterday's very good Washington Post op-ed about aborting disabled fetuses (and it deserves a blog entry of its own) took as its lede the Bennett controversy.

But rarely does disability bigotry in print get a comeback.

When the Sept. 24 New York Times Magazine published Gabrielle Hamilton's arch put-down of the blind would-be chef last month, I read plenty of outrage -- within the disability community, on the email listservs, mainly. The Times printed exactly one letter in rebuttal, a rather halfhearted one, of the "Hamilton wasn't being nice, but blind people do need to be qualified" ilk. And that was that.

When I wrote about the anti-disability rights pundits in my book Make Them Go Away, I naively thought they were quieting down after they'd gotten much of the Americans with Disabilities Act gutted.

As I say, I was naive.

Posted by mjohnson at 03:31 PM | Comments (2)

October 17, 2005

The "S" Word

The "S" word is Spazz. Like the "N" word which we are not supposed to use, it is in turns hated and used with pride.

British tabloids last week were gleefully reporting the "outrage" of UK disability rights groups ("campaigners," they're called) over the introduction of the Colours wheelchair model

From the ever-outrageous tabloid The Sun:

The chair’s US manufacturers chose the name without realising it was a tasteless term for spastic....Makers Colours In Motion insist the word means "wild" or "crazy" in California, where the firm is based.
Well, not quite. I don't think that any gimp in CA or anywhere else thinks spazz means "wild" -- and as for "crazy," here we go again with offensive words that nobody means to offend with. As for Colours not knowing the "implications" -- well, read on.

Not to be outdone, Glasgow's Daily Record jumped into the fray as well.

The controversy's in fact not new -- it's just that the 'bloids have finally noticed. Back in July BBC4 talked with Colours president John Box (read the transcript here) and some folks in Britain's disability scene.

Crip activist Mik Scarlett told BBC4's Peter White,

I've been involved in the media and Disability Now for like nearly 15 years and in that time we have changed our name from disabled people, to people with disabilities, to people that are less able, differently able, back to people with disabilities and now we're disabled people again. In that time nothing's changed but we've had a good 10-15 years arguing over what to call ourselves.... We spend so much time worrying about whether we're called spazz or crip or mong or whatever and no time at all pointing out to society -- call me what you like, but give me an equal rights law that works, give me a job, give me an access to the building - and I don't care.
Scarlett keeps telling White that names aren't that important, and that, after all, Colours is run by a disabled fellow.

Margie Woodward, with SCOPE (the group that ironically used to be called the Spastics Society before it got disability-rights religion) , keeps insisting against Mik S's protests that words do matter.

"Language underpins people's attitudes," Woodward insists, "and if we still reinforce at this present time negative words, especially for children, especially in the playground, especially for wheelchairs and equipment that manufacturers are exploiting on the back of disabled people enforcing discrimination and disability issues...." Well, you know how talking on the air is; not too coherent. Read the transcript.

During all this, Peter White slips in this point: "It's quite a subtle argument in a way isn't it?"

We have the crips defending Spazz and the nondisabled being outraged by it... and who is right?

And what about the show I'm Spazticus? That's part of this same "reclaiming" thing, isn't it?

The question for me is this: Can crips reclaim words like "spazz" in a culture and an environment that doesn't have a clue that this is what's going on?

Let's face it: when Ns reclaimed the "N" word, it was big news.

Is this big news? Does anybody even know this is going on? If a tree falls in a forest and nobody hears it, does it make a sound?

And has anyone in the U.S. let out a peep one way or the other about the Wheelchair Spazz?

A later-in-the-day update from Yours Truly: The redoubtable Lady Bracknell takes on the Spazz controversy today as well (great minds and all, y'know) on Ouch. Read her here. .

Posted by mjohnson at 02:06 PM | Comments (4)

October 14, 2005

Make it happen in Biloxi!

From the Biloxi Sun Herald:

As part of this week's Renewal Forum ... experts from around the nation are [now in] South Mississippi to offer suggestions about ways to rebuild neighborhoods and cities that retain the Coast's character. .... Steve Mouzon, a Miami-based architect, will lead the architectural team. ...
"If we do our job well, then what is going to happen is Mississippi will be the standard-bearer and the example to the whole nation how to build things well," Mouzon said.

This doesn't include housing you can get in and out of if you're in a wheelchair. I blogged about this yesterday, but there's no time to lose, so I'm pressing you again. Please email the folks who are covering all this for the Biloxi paper. Here's the list. Please, please send that email.

Posted by mjohnson at 11:09 AM | Comments (1)

October 13, 2005

Five minutes for a more accessible rebuilt Biloxi

Update: check out the comments at my Friday post -- folks have been writing the Sun Herald and getting some attention!

The idea of making new housing in the Gulf area "visitable" is such a good, sensible and profoundlly right idea... and so ignored. We must -- we simply must -- turn up the heat publicly on this issue.

Note that I use the word "publicly." The National Council on Disability sent a letter to Pres. Bush recently; and there have been other behind-the-scenes initiatives. A few weeks ago, shortly after my first rant on this topic, a number of national disability groups put together a press release (and yes, yours truly was involved) -- it went out over PR Newswire, but as far as I can tell was never picked up by any news outlet.

Yours truly also sent around an op-ed submission to dozens of papers. The Bradenton, FL Herald Tribune ran it in mid-September ("This is an important topic, especially so in our area, which has a high proportion of older retirees," opinion editor Carrie Gentile wrote back to me) but the Herald Tribune doesn't have it online, and as far as I can tell nobody else ran it.

This past weekend, On A Roll's Greg Smith had a commentary on NPR's Weekend Edition -- it was fun to listen to, as most of Greg's stuff is, but I think listeners likely came away with the thought that building homes Greg could get into would be a nice idea to help out folks like Greg... but I am not sure folks came away with the full enormity of the failure to rebuild with the no-step entrance, wider-halls, usable-bathroom features that are the keystones for truly livable housing.

The fact is, the issue of rebuilding homes with basic access features has not yet risen into the public debate on the matter. And that's what's desperately needed. And soon.

The housing-accessibility universal-design crowd has been upset in recent weeks -- and rightly so -- over what they seem to see as an end-run by the New Urbanists to colonize the Gulf Coast area with their style of community. And it appears, to hear them speak of it, that the big mucketymucks in the New Urbanism movement are actively hostile to the idea of access. Wrongheaded, obtuse, and tragic. According to figures provided by the National Council on Disability last month, up to a quarter of the residents of the Gulf Coast regions devastated by the hurricanes are considered by Census figures to have disabilities. According to NCD's information,

In Biloxi, Mississippi, a city of about 50,000 people, 26 percent of residents are people with disabilities. This means that there are 10,700 people with disabilities 5 years of age and older who live in Biloxi.

Scott Rains over at Rolling Rains Report has been taking up the cudgel recently. "New Urbanism is the wrong response to Hurrican Katrina," he says. And he's right. His immediate concern -- and he is right to be concerned -- is the pow-wow going today and tomorrow in Biloxi convened for the New Urbanists to come in and convince the powers-that-be to rebuild their way.:

Yes, Biloxi could be the center of the future. Or, it might just settle for being the showcase for New Urbanist nostalgia for exclusionary architecture. (Rains's blog entry: If Not Biloxi, Where? If Not Now, When?)

From yesterday's (Oct. 12) Biloxi Sun-Herald:

Scores of urban designers from across the nation begin a series of brainstorming sessions today to help South Mississippi cities rebuild after Hurricane Katrina wiped out much of the Coast. ... about 300 local leaders and new urbanist planners come up with ideas for 11 area cities severely damaged or wiped out by Katrina.

It is being called the largest community planning effort ever undertaken by new urbanists, advocates of city designs that emphasize green space and walkable neighborhoods.

Uh-oh. And hostility to access is part of the package? I don't think so! Not if Edge-Centric readers get involved.

Here's what to do -- and it should take only about 5 minutes: Here's a list of the emails of a number of columnists at the Biloxi SunHerald. Write to them -- right away. Point them to information on visitability -- here's a story on visitability to get you started; it has other links, and you can always use

The idea here is not to write a long, detailed email. The goal is to send a brief and concise email quickly, urging the paper to begin questioning a re-building effort that will keep people trapped in their homes when the next hurricane hits (and it will.) Please pass along these emails to as many folks as you can. The key dates are today -- Thursday -- and tomorrow, Friday -- but next Monday will be good, too. After that, it might be old news.

This issue needs to start being discussed publicly. Let's make sure that happens in Biloxi!

Here's the stuff to get you going:

Stan Tiner (, executive editor of The Sun Herald, maybe should be your first choice. He's written a number of columns on Katrina. Kate Magandy (, the city editor for the Sun Herald, would be the one to assign stories about visitability -- and she also writes her own columns. She can be reached at 228-896-2344. Gary Holland ( is the Jackson County editor of The Sun Herald. He can be reached at 228-762-0741.

You can read about all these newspaper columnists and editors here to learn what they write about -- and there are links to some of their earlier columns.

The newspaper also has letters to the editor -- you can submit one online ; but the more interesting feature is something called Sound Off -- you send an email ( and it appears on the website. It has to be 70 words or less, though. More about it here.

Of course, once you do this, you should post a comment here to let us know what you did.

Posted by mjohnson at 10:34 AM | Comments (5)

October 12, 2005

It's feed time again.

OK, all you RSS devotees, we're moved! If you've come here from the old Edge-Centric on Blogger, please change your bookmark: Our new and hopefully permanent home is here, at
You folks who get this: Would you please drop us an email letting us know you're getting it? Thanks! In a few days we should have all the old archives indexed here. If not, go back over to Blogger... we think they're still there! The xml feed option to sign up for this feed is over in the righthand column on the webpage.

Posted by mjohnson at 09:46 AM | Comments (2)

October 11, 2005

Uglydolls and us

Wonder what kind of a rock I have been living under to have missed out on the Uglydoll craze? I can't figure out whether to be excited or ... what? photo of Uglydoll Ox

They seem to be little stuffed... uh, things, I guess, "dolls". They have different names like WedgeHead, and Babo and -- the one here is OX.

You go to the site -- and first you can't get on unless you have the latest Shock or something or other... then you find out they've had all sorts of press, but i didn't find much online. Funny. They've been around for a couple of years. The article from Business Week Online -- no date; it's on the uglydolls site -- calls them "so hideous they're adorable." They've been written up in Time, the Boston Globe... at least says their website.

OK; so they've been around a couple of years. And it seems to me anyway that they speak volumes about, well, difference. But I haven't heard a word about them from the disability culture watch squad.

Here's what I read about OX at one of the site that sells them:

What kind of name is OX? No, not like the animal OX, as in HUG and KISS! How can he hug you with such short arms? OX uses his ears! He's not a very good listener, but he puts his ears to good use ...

What they have in common is... what we might want to call "disability" or at least "deviance from the norm. Either one eye or three ....

This about WedgeHead, who has one eye:

Wedgehead has his eye on you. and he likes what he sees! Finally, someone who understands him! He is very handsome too...can't you tell? What do you mean he looks pitiful? Look at that charismatic posture! Wedgehead understands you too. He sees things the way you see them OK, so he has to stand on his head to do so, but still! He understands exactly what you mean.

Are they disability cool? Has anyone given any thought to that? Or are they its opposite?

This about Tray, who has three eyes:

Tray has three brains! One for each eye, or one per lump. She also sees everything in 3D so you will have plenty to talk about with her. Tray may look a little confused...that may be from each brain ...

What's the scoop on these things, anyway?

Oops, I was wrong. Babo has two eyes. The word on Babo? "What Babo lacks in mind power, he makes up for in love. He's everybody's best friend. ..."

Surely they must be of some use to the disability culture crowd, no?

Posted by mjohnson at 06:33 AM | Comments (3)