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February 28, 2006

Feeding tubes: and now, for something completely different

Kentucky gov. Ernie Fletcher has been in the hospital for gallbladder surgery. Last week he was put on a feeding tube.

But don't start counting the days until the guv is removed from life support and shuffles off this mortal coil. Instead, take a look at the stories (here and here).

Yes, they have a completely different tone from the many who report on people who are considered "better off dead," don't they? Yes, indeedy. In this case, they're using the same kind of language that -- gasp! -- disability rights activists used back when Terri Schiavo was on a feeding tube. Fletcher's doctor matter-of-factly referred to it simply as an "alternative method of [delivering] nourishment."

"Bypassing the pancreas with a feeding tube .... allows a patient to receive needed nutrition," the guv's doctor told reporters.

Imagine that.

The use of a feeding tube is not considered a setback, officials said.

In fact, it's a common measure in situations like these, said Dr. Richard A. Wright, chief of gastroenterology at the University of Louisville.

"It's standard procedure," said Wright....

When a patient has pancreatitis, Wright said, it can be painful and difficult to eat certain things, such as fatty foods and those containing protein. ...

"You want to rest the pancreas as it's recovering," he said.

He added that this usually shortens rather than lengthens a hospital stay, and that patients can continue to receive tube feeding at home if necessary. ( Read story from the Courier-Journal.)

What are we to make of all this? That Terri Schiavo's and Haleigh Poutre's feeding tubes were different from the guv's? Or does it have something to do with the kind of person using it -- the guv is a normal person with a pancreatic problem, whereas the other two are "vegetables" (or Terri was a vegetable, and the jury's still out on Haleigh)?

It also has to do with the fact that Fletcher will recover, a.k.a. return to normal. In fact, his feeding tube was removed on Monday.

So it's OK.

Still, I'm going to save this story for the next time one of those "take her off the feeding tube and let her die" stories crops up. And maybe send it to the reporter. Along with a link to this press release.

Posted by mjohnson at 02:09 AM | Comments (5)

February 22, 2006

Myths about disability

Back in the fall an academic email list had an interesting exchange that I've saved all these months, intending someday to do a blog entry on it. Here goes:

"In class the other day my students and I were talking about how  discriminatory treatment relates to large structural ideas in society  such as ideology or myths," a professor wrote -- the name of the prof does not matter to this discussion, which is, after all, quite universal. "As an exercise, we discussed popular  discriminatory myths about women and people of color. The students  had much to say.

"Then we turned to [a discussion of] disabled people, and it was clear that people had fewer ideas."

Right off, I was interested, and was curious to see what others might say. I've noticed this as well: introduce "disability discrimination" into any discussion of current societal issues -- sitting around after dinner, jawing during a break in a workshop; at a coffee shop -- and suddenly the animated discussion about, say, racism or homophobia will just.... stop; people will flounder around a bit and then it will be as though the issue had never been mentioned in polite society.

The prof started things off by mentioning two "myths about disability" that he thought were fairly common:

1. "Disabled" is "disabled" all the way down: if you have one disability,  people think you have a lot more. If you are in a chair, you are  probably deaf and cognitively disabled, too! [MJ note: decades ago Beatrice Wright called this "the spread effect."]

2. The angry or selfish cripple syndrome: disabled people are angry at the world; they are selfish, too, wanting more than their fair  share of everything.

Others on the list offered up quite a few. They included:

My suspicion is that most non-disabled people don't consider these myths; that is, they regard them as perfectly logical; true.

Posted by mjohnson at 07:48 AM | Comments (7)

February 14, 2006

What IS it about "special"?

There's "special" -- as in "out of the ordinary" -- and then there's "special" as in "for the disabled."

Today in Louisville there's a special (term used correctly) election to fill a vacant state legislative seat. Yesterday's Courier-Journal took the occasion to write about new "special" (term used incorrectly) voting machines.

Repeat after me, reporters: "Accessible." Not "special."

Except, in this case, they are -- given that they were bought "special for the disabled." (As in the minimum they had to do under the Help America Vote Act. At least they did it, you say. Unlike other places. Well, yeah, but... ) If all the voting machines were accessible ones, there'd be nothing "special" about things. Which is what we should be aiming for. But as long as we like the concept of "special," we won't see anything wrong with having two sets -- regular ones for us and "special" ones for them. An article in The Disability Rag about 23 years ago made the point that "special" is just a pretty word for "segregated."

The story I'm whinging about, headlined Special voting machines ready to go, starts out like this:

The two special legislative elections tomorrow may provide the first real workout for special voting machines designed to allow blind and physically disabled people to vote without assistance.

Guess C-J reporter Sheldon Shafer liked linking the two meanings of "special" in one lede. Or maybe he didn't think about it at all.

He gives "special" a workout again a few sentences later:

The Jefferson County Board of Elections has 400 of the new specially equipped voting machines. The county is required to have one at every voting location under the Help America Vote Act....

Read the full story here.

Two other area media outlets who reported on the accessible machines were able to manage without the "special" headline.

Posted by mjohnson at 01:58 PM | Comments (6)

February 10, 2006

Lame, lame, lame

A Ragged Edge reader asks us a question:

Is the word "lame" considered offensive to people with disabilities? Does the fact that the word "ineffectual" is a synonym for "lame" have any connection or reference to disability?

The Merriam-Webster dictionary on the web gives these definitions for "lame":


1 a : having a body part and especially a limb so disabled as to impair freedom of movement. b : marked by stiffness and soreness: a lame shoulder

2 : lacking needful or desirable substance : weak, ineffectual: a lame excuse.

3 slang : not being in the know; "square".

This kind reader has given me another opportunity to hop upon my hobby-horse -- disability words used as metaphors to mean "bad" -- and pontificate.

The definitions offered by the dictionary -- and as we all probably know from hearing the word "lame" used so much to mean something derogative -- show that the word has migrated, as have most older or "archaic" words about disability, into a second, metaphorical meaning: ineffective, bad, incompetent, etc. I've written about this happening with blind and also with deaf. And now I'm blogging about "lame."

Because "lame" has been "taken over," if you will, by others using it to mean "weak, ineffectual," it now seems like a slur even when used in its original sense. In this way it functions like the "N" word in racial discourse, the Ur 'Word We Cannot Use' -- only in the case of the "N" word, African-Americans -- as a group and as individuals -- are highly outraged if it gets used (and rightly so, I say).

When disability words get used badly, disabled people mostly just grin and bear it. Doesn't mean it's the correct thing to do, though.

Reporters sometimes, trying to be too clever by half (now what does THAT expression come from?), will sometimes refer to people with disabilities en masse as "the halt, the lame and the blind." We can talk about PC and get all the PC watchdogs riled up, the ones who like to complain that the crip movement is too PC. Given the lack of outrage most of us show over these terms, though, I'd say we're no way too PC; that we're in fact afraid of being PC, that the PC watchdogs have chewed us into submission.

I think a little more complaining -- or at least discussion -- is called for.

Posted by mjohnson at 11:08 AM | Comments (6)

February 07, 2006

The New Supremes, The Future ADA

Law prof Samuel Bagenstos last week posted an entry on his Disability Law blog that I hope a lot of folks will read. He was looking at what the confirmation of Justice Samuel Alito might mean for disability rights. And all this week, he and Ruth O'Brien are debating the future of the Americans with Disabilities Act.

Enough with all the yelling about how awful Alito will be, Bagenstos seems to be saying. We've got Alito now.

And that's true -- while you want to do what you can to influence whether somebody gets onto the Court -- and to make a public statement -- now we've moved into a different mode.

Bagenstos reminds us that it's

hard to extrapolate from a judge's conduct on a lower court to project that judge's conduct on the Supreme Court. Justice Alito now has a degree of freedom that he did not have when he was a judge on the Third Circuit. The question is how he will use it.

Yes, that's the question.

Bagenstos also reminds us that Justice Sandra Day O'Connor, whom Alito replaces, was no great friend of disability rights. I found his views a useful tool for thinking about the future. Read his entry here.

Speaking of thoughts about the future, on Monday Legal Affairs Magazine's website launched a debate between Bagenstos and Ruth O'Brien, Professor of Government at John Jay College of Criminal Justice and author of "Voices From The Edge: Narratives about the Americans with Disabilities Act." Read the opening volleys in their debate, Is The ADA Expanding? It's pretty interesting stuff -- not dry at all. I think the thing's going to keep on all week. Click on the link later on and find out.

Posted by mjohnson at 06:12 AM | Comments (0)

February 06, 2006

'Lucky Leg' Brings Steelers Win

Continuing our saga of William Gray's lucky leg coverage in the Louisville Courier-Journal -- this from today's paper -- front page of the Metro Section:

About 30 minutes before kickoff, the chanting began inside the smoky, crowded, Steeler-crazed R Place Pub in Lyndon.

"Lucky Leg! Lucky Leg! Lucky Leg!"

William Gray, 40, hoisted his prosthetic limb covered with Pittsburgh Steelers logos, gave it a kiss, as a champion would greet a trophy, and then passed it around for fellow fans to bless with kisses.

Gray, the vice president of Louisville's Steelers fan club, explained that he wore his spare plain prosthetic limb yesterday because he knew Lucky Leg would be in demand at R Place.

Lucky Leg has been credited by some members of the Louisville chapter of the Gold and Black Brigade with sparking the team to the Super Bowl....( Read rest of story, Waving towels, limb, Steelers fans elated from the Louisville Courier-Journal.)

See last week's blog entry about the Lucky Leg..

Nothing like a lucky prosthetic leg for a little disability cool, I guess.

Posted by mjohnson at 07:51 AM | Comments (0)

February 03, 2006

Superbowl Disability Cool

UPDATE: Sure enough, the Steelers won: More on the Lucky Leg's 15-minutes of fame here.

One of the cleanest examples of Disability Cool we've seen in a long time comes from this morning's C-J Extra:

Steeler Nation flies a flag called the Terrible Towel, born in the days when Pittsburgh dominated the National Football League....

So move over, towel. There's a new talisman in town.....

A new Steelers legend was born in Louisville last month. It's called the Lucky Leg,...

Four weeks ago, in the first round of the playoffs, Pittsburgh trailed Cincinnati 17-7 in the second quarter. Gray decided to kick-start the Steelers with his prosthetic leg -- the one with the Steelers helmet on the shin.

"I just popped it off and started banging on the table with it," Gray said. "Everybody was like, 'What is that?' I said, That's my lucky leg!'

"Then everybody started chanting, 'Lucky leg! Lucky leg!' "

..."I was thinking about getting a Steelers tattoo," Gray said, "but I was like, I need a new leg anyway, so why not get a Steeler leg? That'll kill two birds. I'll have a tattoo and a leg -- and I won't have to worry about the pain of the tattoo."

Read 'Lucky Leg' : Louisville fan's prosthetic limb boots Steelers to victories, by Mark Coomes, The Courier-Journal.

Posted by mjohnson at 07:35 AM | Comments (0)

February 01, 2006

Principles on Alito

Now that Samuel A. Alito has become the 110th Justice of the U.S. Supreme Court, I guess we settle in for the long haul. What next will come before the Court on the disability rights scene? I find a good place to do my "what's up next" cruising is the disability law blog. I really am not sure what's up next; mainly because I haven't been paying close enough attention.

Last week I criticized the American Association of People with Disabilities for what I considered its wanting-to-have-it-both-ways stance on Alito. Today I want to praise two groups who took a principled position publicly, making the case that Alito is going to likely be quite bad for disability rights: Yesterday the Justice For All Listserv posted National Council on Independent Living director John Lancaster's op-ed article: "Persons with disabilities cannot afford another judge on the Supreme Court that cares more about the so-called 'dignity' of the states than about equal opportunity for persons with disabilities to live in the community, obtain an education and pursue a career." Lancaster wrote that it was the first time in NCIL's 24-year history that the group had ever opposed a Supreme Court nomination.

As far as I can tell, no news outlet ran this op-ed. Perhaps it wasn't even sent to newspapers; I'm not sure. In any case, it was too late to expect it to be published. Once the media saw the handwriting on the Senate wall there was no point in trying to get published with any more politicking about Alito. ADAWatch had also sent around an op-ed -- to over 100 newspapers, I understand -- but it too had no takers.

Yesterday, soon as Alito was confirmed, ADAWatch issued a statement: "Core legal rights of people with disabilities - and all Americans - are now in jeopardy as Justice Alito joins a majority that has routinely ruled to undermine Congressional efforts to provide 'justice for all.'"

That seems to be all we can do at this point -- make the statement. And I'm glad that there are some groups doing it.

Posted by mjohnson at 04:41 AM | Comments (0)