It's Nice to Be Noticed

Over at the Disability Studies blog, there's a recent post that takes note of a piece I wrote several years ago in MAINSTREAM magazine. The magazine is no longer published, but this piece on Tiny Tim lives on. By the way, it's also posted on this site down below from last Christmastime. Read and enjoy. And thanks much to Penny Richards for pointing out the piece.

Look Who's Against Us

You know that the ADA Restoration Act is moving though Congress with a ton of supporters in both houses. And yet, there's another ton of people opposed to fixing the ADA so that it clarifies the intent of the original law protecting the rights of all Americans against discrimination on the basis of disability.
Over at National Council of Independent Living, they've got a post and a link to the list of organizations opposing the Restoration Act. Check it out. Take a minute and tell one or more or all of them to straighten up and fly right.

Here's the list:
Opposed to The ADA Restoration Act:
Associated Builders & Contractors
Food Marketing Institute
HR Policy Association
International Foodservice Distributors Association
International Franchise Association
National Association of Convenience Stores
National Association of Manufacturers
National Council of Chain Restaurants
National Federation of Independent Business
National Restaurant Association
National Retail Federation
National Roofing Contractors Association
Retail Industry Leaders Association
Society for Human Resource Management
U.S. Chamber of Commerce

Jerry Lewis shows who matters

Labor Day again, and that clown Jerry Lewis staggers through a numbing day, rattling his tin cup for money for MDA. Crips have been complaining and protesting for years about Lewis's attitude and derogatory decriptions about people with disabilities. The mainstream media has taken little note. But this time, Jerry let fly a crude anti-gay remark -- and you can read about it, and hear about, just about everywhere. The gay community has media clout. Good on 'em.

The disability community has a long way to go to match that clout. We're working on it, and making headway. But it always seems to be somebody else's job.

We even have trouble getting other groups interested in our issues.

Last weekend, the National Lesbian and Gay Journalists Assocation held its annual meeting in San Diego. I was on a panel about disability and coverage of disability issues. There were five panelsts named; one was sick and could not come; two failed to show. Not that it mattered much; only three people turned up to hear the discussion.

So it goes at most such events. The panel almost always outnumbers the audience at disability sessions at journalism gatherings. Nobody wants to be disabled -- or think about it. If they have a disability, most journalists don't want to admit it. Journalists, like most people (I would say), think of disability as an individual medical issue, not as a social-political-economic issue encompassing a huge class or group of people.

It is ironic that on Labor Day many people with disabilities have to protest and demonstrate to claim our basic human rights instead of focussing attention on our epidemic unemployment and poverty.

I Hate Tiny Tim

It's nostalgia time. Again. The following is a piece I wrote several years ago for MAINSTREAM magazine (I was the editor). I trot it out every year or so. Enjoy.

I hate Tiny Tim.
TT is on the ropes in Charles Dickens' Christmas Carol. Sickly and dependent, TT is getting shakier and shakier on that homemade little crutch. But he is saved from death by old Ebeneezer Scrooge, who sees the light in the nick of time.
Now, before you go apoplectic at my assault on wee Tim, think about how he helps shape some of society's most cherished attitudes -- charity, pity (for poor little TT), for example. Tiny Tim, plucky, sweet and inspirational, tugs at the public heart.
TT has become Disabled Everyone in popular culture. TT is Jerry's Kid.
Society idealizes this sentimental image of disability as a pitiful child in desperate need of help. People feel better when they give a few bucks or a little toy for a kid with a disability.
As an enduring symbol of modern Christmas time, Tiny Tim resonates with a deeper, darker meaning for people with disabilities. The problem is that not all people with disabilities are children, but we all tend to be treated as if we are Tiny Tims.
When I'm in the stores and malls this time of year I get a lot of smiles meant for TT. How do I know? Well, I am a middle-aged bearded and balding adult in a power-driven wheelchair. People, mostly women but some men also, flash smiles at me. Not the kind of smiles most men would hope for from a woman, nor the neutral courtesy smile exchanged by strangers passing on the sidewalk, but that particular precious smile that mixes compassion, condescension and pity. It's withering to the person on the receiving end.
I hate it.
I hate it because this Tiny Tim sentimentality stereotypes people with disabilities and contributes to our oppression. When you think about a person with a disability as someone to feel sorry for, as someone to be taken care of and looked after, it is difficult to think about hiring them as a teacher, an architect or an accountant. That's part of the reason why the jobless rate among working age people with disabilities consistently hovers around 70 percent.
And because family, friends and reborn Scrooges nourish and protect Tiny Tim, the rest of society doesn't have to worry too much about making sure people with disabilities have equal access to education, adequate housing, transportation, and other public facilities.
What about the highly touted Americans with Disabilities Act, you ask? Good question -- and good law for the most part. But complaints about violations of the ADA are piling up faster than federal agencies such as the Justice Department and the Equal Employment Opportunity Commission can handle them.
Inadequate resources are available to enforce the law. And local authorities moan and groan about unfunded federal mandates that they can't afford to implement -- such as providing access to all citizens.
Every year this country spends more than $200 billion on programs that essentially keep persons with disabilities in a state of dependence, severely restricting us from getting a good education, going to work, or even getting married.
Not all of that money could be saved by removing the penalties on people with disabilities, but billions unquestionably could be saved. Not only would people with disabilities gain independence, but thousands of us would become taxpayers instead of tax users.
These are serious issues affecting people with disabilities and our struggle to be included fully in American life. Remember this the next time those facial muscles begin to activate that Tiny Tim reflex.
TT belongs to Christmas Past. And that's no humbug.

Jerry Lewis siding with us????

Jerry Lewis and MDA have join the disability rights movement campaign to get the government (in the guise of the Centers for Medicare and Medicaid Services) to back off draconian new rules on providing power chairs and scooters to people with disabilities. The new rules, set to take effect in two weeks, will make it even more difficult to get the equipment we need to live reasonably, let alone independently.

These new rules affect everybody who uses powered mobility equipment. It's not just people "confined" to their homes, as Medicare likes to think of it. It's all of us who work, go to school and otherwise participate in the life of our communities. That's because most if not all health insurance providers follow Medicare standards in supplying mobility equipment.

On the one hand, the Government talks loftily of promoting the independence of people with disabilities in education and employment, and access to everything the ADA promises.

But then at the same time they pull the rug out from under us with this kind of ruinous action. It is inside out and upside down.

The statement by Jerry Lewis and MDA gets it pretty much right:

"Under the new policy, applicants who can transfer from bed to wheelchair by standing and pivoting, with or without assistance, won't be eligible for power wheelchairs with more than basic features. This assessment doesn't account for disease progression and fatigue, crucial factors when determining the wheelchair needs of a person with neuromuscular disease, Lewis said.

More complex features such as tilt, recline, stronger motors, custom headrests, and ability to navigate uneven terrain provide wheelchair users with more independence and safety. For instance, tilt-and-recline features assist users with self-transfers, are safer on steep inclines and help prevent pressure sores.

If chairs have fewer features needed for independence, the result may be to force people out of their homes and into long- term care facilities.

In addition, the new fee schedule places a greater financial burden on low-income people with severe disabilities and the nonprofit organizations that serve them."

These new Medicare rules put crushing pressure on people with disabilities for no good reason but to save a buck. It's not medicare, it's mediterror.

We need to see more of this from DOJ

Accessible, affordable housing is a critical need for people with disabilities across this country. Today, your Department of Justice struck a blow for our side: Settling a suit against a group of developers, builders, architects and engineers who built two apartment complexes in Olathe, Kansas leaving out legally required access features. The Ridgeview and Indian Meadows apartment complexes will have to retrofit parking areas, paths and walkways, public and common-use areas, as well as interiors of ground-level units to enhance access -- at a cost of about $1.2 million. Plus these losers will cough up $200,000 for access features on request, $200,000 for damages to unidentified victims, and $50Gs in penalties. Oh, and they have to get training on the requirements of the Fair Housing Act and the ADA -- so they don't do this crap again. Good.

Murdering for purity

Given all that we have heard about life and dictatorship in North Korea, this should not be surprising. The report from the Times of London is chilling. I found the link from Andrew Sullivan.

THE North Korean regime’s obsession with racial purity has led to the killing of disabled infants and forced abortions for women suspected of conceiving their babies by Chinese fathers, according to a growing body of testimony from defectors.
The latest description of Kim Jong-il’s policy of state eugenics came from a North Korean doctor, Ri Kwang-chol, who escaped last year and told a forum in Seoul that babies with deformities were killed soon after birth.

“There are no people with physical defects in North Korea,” Ri said. Such babies were put to death by medical staff and buried quickly, he claimed. He denied ever committing the act himself.

Exiles in Seoul said Ri was now keeping a low profile, fearing retaliation by North Korean agents, who have assassinated foes in the South Korean capital before. But his account added to the evidence that the Kim family dictatorship is founded on mystical notions of Korean racial superiority rather than Marxism — a reality that explains its deepening estrangement from China.

Eugenics. Murder.

Carnival arrives in town

Check out the first Carnival of Disability Blogs by Penny Richards at Disability Studies, Temple U. There's a lot of terrific stuff out there. And let me add, as have others, that it's good to see Mary Johnson back.

Not-so-free speech cancelled

San Diego has long been known as a conservative town. Very conservative. Sizzling growth over the past decade or so may be reshaping the old image. One sign: Today's Union-Tribune (forever sneered at by many as a parrot for far-right-wingers and the local establishment) carries a small item about a "Speakers Series" biting the dust before a word was uttered. Poor ticket sales ($60 each) were blamed for the cancellation of the series, which was to be highlighted by former NY mayor Rudy Giuliani and political shouter Ann Coulter. Bob Dole and not-so-conservative James Carville and Wesley Clark were also on the bill. Maybe the conservatism is morphing into ennui.

Rough Ride: Segway bumps into total recall

I haven't seen much comment about the big recall of the much-ballyoo'd Segway this week. The company is calling back ALL 23,500 of the wheely toys that it has ever sold because of what's termed a software glitch that can cause the wheels to reverse course and maybe toss the driver off. What I find most interesting is that after all the hype only 23,500 Segways have been sold since 2002. That doesn't seem like very many worldwide. But then, they cost from $4,000 to $5,500 a pop. Even selling that few is a lot of money. A lot of money.

Gawker's bigotry is flaring

Height, or maybe depth, of criticism. Clever wordsmith Gawker is so quick with a smart remark today, commenting on Katie Couric's farewell to the Today show. Here's his smirk:

"Drooling Americans Say Bye-Bye to Katie"
It was hard to choose a clip from this morning’s Today show — so many montages, so many egregious and offensive instances of sap. But eventually we settled on a shame-inspiring reel of taped farewells from Couric’s fans across America, all of whom should be promptly given helmets and placed on a very short bus. If ever there were something to spark another terrorist attack…

Carrots, hammers, clout and even fun

Everyone talks about the 80-20 rule. You know, out of any group, 20 percent of any group will actually do something, while the other 80 percent won't do much, if anything at all. If there are 54 million people with disabilities in the U.S. (and that's not agreed by everyone), then you might think there are nearly 11 million active crips. What a glorious notion! It's not remotely true though. In my home state of California, the population is about 33 million. Taking a conservative track, let's say about 14 percent of those folks have a disability. Works out, um, to about 4,620,000 people with disabilities. Following the 80-20 rule, we should have nearly 650,000 active crips. Maybe we should consider a 95-5 rule. That would be 231,000. The other day I saw a newsletter from a statewide disability organization (that, granted, ain't what it used to be) reporting that its membership was about 650 -- 650, less than one frigging thousand. OK, full disclosure: I am a lapsed member of said organization. I have some issues with them. But I expect to re-up one of these days because its goals are worthwhile.

I worry about our ability to organize ourselves so that we can wield influence on legislators, policy makers and government entities. If the non-disabled world doesn't see us as a constituency with voting power or economic power, we won't be taken seriously. We've managed to put legislation on the books nationally and in many states, but getting implementation and enforcement is a different story. We need clout. We need number and activism to have clout.

Now we get a dribble of lawsuits that opponents used to create a hostile backlash against greedy lawyers and lawsuit happy crips, who often are portrayed as gullible dupes of those greed lawyers.

By and large we have failed to organize ourselves in sustainable action groups. Filing lawsuits has produced a mixed bag of results.

And that leads me to Mary Johnson's perceptive blog entry today, riffing on things we in the United States disability rights movement might learn from our peers in Britain. I like this particular approach the SCOPE group organized.

Make it a campaign.

Make it fun.

In my home town, the local ILC has been developing what they call "Blue Ribbon Week" during which staff and volunteers try to find businesses that are providing access, or making a real effort to do so. Such places are recognized publicly by the ILC. Businesses that fail to measure up, or which resist barrier removal, are given notice of what they have to do to get into compliance. They get follow-up visits. The ILC has not yet worked out an effective hammer to use on this miscreants, but that's developing. I like the carrot-and-hammer approach. It may not slake the thirst of some crusaders for blood, but it may advance the cause of access and inclusion.

Heaven knows, it's time to do something to ignite some excitement and momentum. And fun, too.

BADD, BADD, BADD -- Beautiful!

Wouldn't you know. Blogging Against Disablism Day sweeps the blog-ether, and most people (at least here in the Etats-Unis) are obsessing on the day without immigrants -- marches and one-day economic boycott mounted by mainly Mexican and Latin American immigrants, legal and illegal -- in protest of draconian immigration laws being proposed in Congress. Nonetheless, BADD is beautiful. Organized by Diary of a Goldfish, Blogging Against Disablism Day was embraced by more than 100 bloggers. Disablism is more often called Ableism in North America. But the meaning is the same: discrimination against persons with a disability. It is so pervasive as to be unrecognized even by many people with disabilities. It is like the water of the ocean to a fish, or the air we breathe. Many non-disabled people think they are being compassionate and caring, when in fact they are putting us in a box on a less-than shelf. Like most people with a disability, I have stories. Of learning that a supervisor thought I "could never hope" to rise above the entry level position I held out of college. Of learning later on in my career as a newspaperman, that a supervisor "thought I was not interested" in a certain promotion and so never asked me about it. At least I was never sentenced to life in a nursing home by somebody who couldn't see past his or her stereotypes. For more BADD, check out Ragged Edge Online , and the long list at Diary of a Goldfish. Let's not let this exercise be a one-time event. Be BADD everyday. BADD is beautiful.

Keep dying hard -- we're Not Dead Yet.

UPDATE: Well, I wrote too presumptively. In fact, this symposium does include at least one voice from the disability community. Adrienne Asch, a formidible scholar and student of disability issues, is included in the lineup. Still, it is difficult to see this event as negative from a disability perspective.

Talk about a stacked deck. Let’s get together to figure out ways to make it easier for people in America to die (read: kill off burdensome people, especially relatives who complicate our lives). So the University of Pennsylvania Center for Bioethics, run by the notorious and disability-phobic Dr. Arthur Caplan, having a symposium, oops, I mean a special symposium: The Legacy of the Terri Schiavo Case: Why is it so hard to die in America? From the Press Release: “The two-day symposium is designed to encourage a national dialogue about the future of end-of-life issues -- including lessons learned, challenges that remain, and ways these types of issues should be handled moving forward. Hosted by Dr. Arthur Caplan, chair of the Department of Medical Ethics and director of the Center for Bioethics, University of Pennsylvania. Symposium speakers include: Michael Schiavo, Terri Schiavo's former husband; Circuit Judge George W. Greer, Schiavo case judge; Julia Duane Quinlan, mother of Karen Ann Quinlan; Mary J. Labyak, program director, The Hospice of the Florida Suncoast, hospice where Terri Schiavo died; Jay Wolfson, Dr.P.H., J.D., Terri Schiavo's court-appointed guardian; Robert Bazell, chief science and health Correspondent, NBC News.” Not surprisingly, nobody from the disability rights side is included to present other perspectives.
The death-fest will be held from 8 a.m. to 5 p.m. this coming Sunday, April 30 at the University of Pennsylvania School of Medicine, Auditorium and Lobby, Biomedical Research Building II/III, 421 Curie Boulevard, Philadelphia, PA 19104.
The gig is to mark the 10th anniversary of the Center for Bioethics. I think I’d rather attend Not Dead Yet’s 10th anniversary fete (see item below).

Will 'Robotic Legs' knock the wheels off your chair?

Uh-oh! Better watch out Ibot. “Robotic legs” may be marching this way from Japan. Atsuo Takanishi, a researcher in Tokyo has created a two-legged robot that “can fully operate in a human environment – specifically, one with features such as stairs that they can climb as homo sapiens do.” See a photo here. The geeky-named WL-16RIII is operated using a pair of joysticks (maybe not the best for a lot of crips). But Takanishi says he hopes to develop models that more severely disabled folks can use. Look for one in a showroom near you in, maybe, five years. Well, I guess the Ibot has a bit of breathing room. Thanks to Rory at RH Online for the lead and to Slashdot for the links.

Rogue Garage Devours Party

It's seems like leading a horse to water...

When we see anything in the newspapers (or TV, or …) that purports to touch or reflect our lives, people with disabilities mostly see cartoonish stories of vapid inspiration or overcoming. This isn’t news. Today on a media center site, Susan LoTempio, assistant managing editor for readership at the Buffalo News and a person with a disability, writes about the lack of coverage of real life disability. And she offers some tips for reporters and editors to do it right.

“I'm a wheelchair user who has worked in newsrooms for 30 years,” LoTempio
writes. “And, not for lack of trying, I haven't had much success getting stories
written about the things that affect me -- and people like me -- every single
day. Things like:
Access to public places;
Subtle and not-so-subtle discrimination;
Poor medical care; and
Lack of recreational opportunities.”

I share LoTempio’s frustration. I too worked in big newspaper editorial departments and struggled not only to get good, solid coverage of disability issues, but to avoid those awful forays into sappy, patronizing stories that regularly bring groans of complaint from the disability community. It was a never-ending and largely unsuccessful effort.
If you know any reporters or editors, pass LoTempio’s column on to them. Hell, send it to your local newspapers editors and TV news editors even if you don’t know them.
“In-depth coverage of disability issues requires no more effort or skill than any other story. First, do your homework. Then report, ask, research and report some more.,” LoTempio writes. “One of the most degrading stereotypes is that we can't speak for ourselves. Journalists can certainly help change that misperception.”

Not Dead Yet -- 10 years and fighting on

Not Dead Yet is a national disability rights group that was founded on April 27th, 1996. A national leader in the fight against legalization of euthanasia, assisted suicide and other forms of medical killing, Not Dead Yet was founded on April 27, 1996.
Not Dead Yet (NDY) was a leader in the battle against the starvation and dehydration of Terri Schiavo, and for the protest and criticism of Clint Eastwood’s film "Million Dollar Baby." We’re admirers and supporters of NDY and its leaders, Diane Coleman and Steve Drake. They are true heroes.
To mark the anniversary Not Dead Yet has mounted a Disability History Exhibit in Chicago, its home base. If you’re anywhere near Chicago, check it out:Thursday, April 27, 2006, 1:00 - 2:30 p.m.National Vietnam Veterans Art Museum1801 S. Indiana Ave., Chicago, IL 60616

Blogging Against Disablism Day

In the U.S. it is usually called “ableism”. Elsewhere, it’s “disablism”. The meaning is the same: discrimination against people with disabilities. In the expanding blogiverse, many crips regularly tackle living the life with disability. Now, Diary of a Goldfish has launched an intriguing notion: “the idea is to see how powerful disabled people and the supporters of equality can be as a combined voice in the blogosphere. Are there as many people prepared to put their two pennies’ worth in on this subject as there are on sexier subjects such as Race and Gender?” Blogging Against Disablism Day is May 1, 2006 . You can sign up at Goldfish's site.

I wonder how we could do something creative around the anniversary of the ADA this July 26. Maybe a blogfest on A Day in the Life...... Any ideas?

Taking lunch yesterday under the gaze of the pandas.