This line in yesterday's Washington Post story by Lauran Neergaard, Spot in Brain May Control Smoking Urge, caught my attention.
This morning I ran across it again, this time in today's New York Times story on the same news item. In the third paragraph of Benedict Carey's article In Clue to Addiction, a Brain Injury Halts Smoking (the same location, by the way, that I found it in Neergaard's piece) I came upon it in a slightly modified form:
While no one is suggesting brain injury as a solution for addiction, the finding suggests that therapies might focus on the insula . . .
What is this? I suspect, frankly, it was part of the press release/ news conference / announcement hoopla, and so reporters just stuck it in.
But it got me to thinking: Why not? Why not cut on the brain to remove the smoking urge?
The unquestioned rejection of such an idea got me to thinking again about Ashley X, the little girl whose parents OK'd that series of operations to keep her breasts small and her body from reaching its full growth, in order to make her easier to "care for."
The tabloid news craze that was Ashley has pretty much died down. But then parents-should-be-allowed-to-kill-disabled-newborns apologist Peter Singer has an op-ed article in today's New York Times about it.
The timing interests me: how come it wasn't published earlier, during the height of the Ashley controversy? Did Singer approach The Times about doing the piece, or did The Times contact Singer? I suspect the latter.
Frankly, the content of Singer's piece interests me less than the timing and the who-contacted-who. The argument is vintage Singer: "What matters in Ashley's life is that she should not suffer," he writes. "Beyond that, she is precious not so much for what she is, but because her parents and siblings love her and care about her. Lofty talk about human dignity should not stand in the way of children like her getting the treatment that is best both for them and their families."
I will leave it to those activists with disabilities who were immediately horrified upon learning of the Ashley Treatment to explain the fallacies in Singer's thinking, as they have so often done before.
What I am stuck with may be a much simpler problem -- although it continues to baffle me: Why is modifying the brain of "normal" people who have a smoking addiction so quickly called "brain damage" or "brain injury" as though it could in no circumstance be countenanced, and yet when the person is already disabled, like Ashley . . .
Well, you can finish the conundrum. It's beyond me right now. It will be interesting to see, though, if anything like a controversy emerges.
]]>As if to underscore the marginality of disabled people as to having any kind of stake in things that are done to them, the CNN Quick Poll appearing in the left-hand column of this web page asks, "Who should have the final say on allowing disabled people to have controversial surgeries?" Voters can select one of two choices: "Caregivers" [sic] -- or "Ethicists."
This speaks volumes.
]]>It's a troubling case from many directions. I suppose I gave the reporter more to think about than I should have, maybe. I talked about implications of the case, which is often not a good idea when there's a deadline looming. Nonetheless, I thought I did my best.
I have little patience with folks who are always yelling that the reporter misquoted them; people who refuse to talk to reporters with the excuse that they fear being misquoted. People who, because they want to maintain so much control over the story, end up ensuring that no story at all -- or the wrong one -- gets reported. I've railed about this before.
So I'm not one to yell about "misquoting" lightly.
But in this case it was pretty serious.
There, in The Guardian, the story told folks that I'd said, regarding "implications," that
What will now be said in the case of a child with spina bifida, who you could argue has the same physical challenges but whose brain is fully functioning?
No; I did NOT say "physical challenges."
I don't know exactly what I DID say -- probably "physical functioning," which is the way I'd normally make a point like this -- but I know I did not say "challenges." I would never refer to anyone with disabilities having "challenges." Never.
Breaking my usual rule not to challenge (ha ha! used correctly here) a reporter over an inadvertent change of wording (after all, it's not usually CRUCIAL that every word a source says be exactly as spoken), I have just emailed him about the problem.
Because my saying "physical challenges" is... well, it's like me telling a reporter that someone is "a retard". I just wouldn't do it. It would never come out of my mouth.
Already I've received some emails asking me, "Did you REALLY say that?" Because people who know me know how much I abhor the term "challenges" to refer to disabilities.
Rather than repeating myself further, I'll just paste in a Ragtime editorial I wrote back in July, 1985:
Ragtime: The problem with challengeThere. I heard it again.
"It's not our problem, it's his challenge," a young mother was saying about her disabled child.
"My child is the same as any child. His challenges are just greater. I guess you'd say he's physically challenged."
"Physically challenged." The new phrase.
We try to find ways to make our disability sound positive. The latest thing we've come up with is to refer to ourselves as "physically challenged."
I don't like it, though. It ignores a crucial fact: The reason we can't do lots of things is not because we're lazy, or because we won't accept a challenge (isn't it implied when you won't accept a challenge that you're a chicken?) but because many things are simply beyond our control. Like barriers. Like discrimination. That's not admitting failure to accept a challenge. That's admitting a political truth. And admitting a truth is the first step toward changing it.
Until you've tried to make it your responsibility to get a job--only to find you can't get in the company's front door because of their steps and your quadriplegia, (and the company isn't required to put in a ramp, so it doesn't)--you may not understand why "challenge" is no good as a description of what we face.
Until you've made it your responsibility to get downtown, and discover there are no buses you can get on, you may not realize that it isn't a challenge you face, but discrimination. But when you call your local paratransit service and they say, "Sorry, if it's not for a doctor's visit, we'll have to put you on the waiting list--maybe we can schedule you in 10 days or so" you should begin to realize it. A challenge is something you can solve by yourself. You can't solve the paratransit problem by yourself.
"Those of the handicapped constituency who choose to have others bear their burdens and eliminate their challenges are seeking to avoid the central issues of their lives."
That's from Eileen Marie Gardner's writings (see page 17).
Do we believe this? Evidently we do.
I'm afraid that many people would tell us that we are "challenged" by our disability to do the same things as people who aren't disabled. "And if we can't?" we might ask. The person who believes in "challenge" would say it's our failing: we haven't met our "challenge."
Isn't this just the same old crap we've been told all along, under a new title?
When are we ever going to believe, in our hearts--truly believe--that our problems are not things we are given by a God, to solve ourselves, but are things that we have a right to require our society to change--because the problem isn't our disabilities but the inaccessible environment which society built in the first place?
We say that, all the time. But we don't really believe it, do we? If we believed it, wouldn't we see that calling ourselves "physically challenged" is bad for disability rights?
This, by the way, is from the July 1985 issue of The Disability Rag.
(The Advocado Press has the complete digital archive of The Disability Rag, 1980-1996, all in searchable text format, on a CD-Rom, for $299. It's a great addition to any library or crip organization. Order it here.)
]]>What's a person to do when there are only so many hours in the day, and hours and hours of good blog surfing to be done?
What one does is make a very short list. Herewith, my list:
I have to admit that as time passes I find myself starting my blog surfing most days with a visit to two blogs: Disability Studies, Temple U and The Gimp Parade. Between the two, I learn a lot about what's going on in the disability blogging world.
There are many many very good blogs out there -- ones I try to visit often. Others, I'll admit, have only warranted a visit or two. Some focus too much on the medical aspects of disability to be of much interest to Ragged Edge. Others seem to change infrequently. But I know I'm almost sure of finding something new at Disability Studies, Temple U and The Gimp Parade. So I start with those.
And these two blogs seem to maintain nice, updated blogrolls, too -- so I can find out about new disability blogs there as well.
I also make it a point to visit Sam Bagenstos' Disability Law blog -- a really good source for breaking news about the latest in significant disability legal developments. It's timely, it's usually short -- and Sam makes legal stuff easy to understand even for us non-lawyer types.
]]>I was reading the blog of our local left-leaning free weekly The Stranger this morning and was shocked to read a post from one of their staff political writers. Erica Barnett was actually calling for banning wheelchairs from bus routes because the extra time necessary to load them was causing her to be late to work.The Stranger has earned a reputation as a fervent defender of progressive issues, particularly gay rights so it was a surprise and tremendous disappointment to see the posting. I didn't know where else to send this, but I hope you can start spreading the url and put some pressure on The Stranger.
Thank you.
"Should the Handicapped Be Banned From Express Buses?"
http://www.thestranger.com/blog/2006/11/should_the_handicapp.php
I followed the link and found this choice section, which pretty much gets to the heart of Barnett's snit:
I’m just putting this out there: Is it fair for one or two handicapped individuals’ right to public accomodation to trump the right of dozens or hundreds of others to have reliable transit service that gets them to work on time? Is it fair for two people in wheelchairs to make everyone else on the “express” bus late?
The tenor of this complaint is about the same as those of the Cato conservatives whose 1990s attacks against the ADA I wrote about in Make Them Go Away.
Conservatives, liberals, progressives, libertarians... makes no difference: they all yell that "they are hurting us." The same mantra, again and again: "make them go away," they say.
Not much to add to "Appalled in Seattle's" call to put pressure on Ms. Barnett. Readers, please have at it!!
]]>Charlotte has confounded medical opinion and is now three years old. However, she is severely disabled and needs constant medical care.
England's Royal College of Obstetricians and Gynecology has just come out with a proposal to begin discussing when "deliberate intervention to cause the death of an infant" should be legalized. The reasoning behind the doctors' effort, apparently, is that there's more at stake than just the child's disability -- there's the family's burden, economic concerns and all that. Problems not just for the kid but for society as a whole. And, they seem to be saying, if society is coming to accept things like assisted suicide and "hastening death for mortally sick adults and the dying elderly," then doesn't it just make sense?
This has certainly been Peter Singer's reasoning.
The Royal College's proposal has been kicking around in the British news all weekend; the lines I refer to come from the "This is London" website -- We must debate mercy killing of disabled babies, say top doctors -- and can be found in this section:
Any law allowing newborn babies to be killed would cover cases like that of Charlotte Wyatt, who was born three months prematurely, weighing just one pound and with severe brain and lung damage.Doctors wanted to switch off her life support machine but her parents - who have now separated - fought to keep her alive.
Charlotte has confounded medical opinion and is now three years old. However, she is severely disabled and needs constant medical care.
"Confounded medical opinion." Yeah, medical opinion is often "confounded." In every sense of the term.
How many disabled people do you know -- maybe you yourself, eh? -- who tell stories today of having escaped the predictions of the medical establishment? "The doctor told my parents I'd be a vegetable," says a doctoral candidate. "My family was told by doctors I'd be dead before I was four," says the head of a state agency.
You know the stories. We've all heard them; many of you may have your own personal versions.
But the stories don't seem to sink in to people like the members of the Royal College. Or maybe they do sink in, but they are somehow off the point.
Maybe the real truth is simply that lots of people don't care whether there's a possibility the disabled infant will go on to be a musician or a philosopher or a teacher. Maybe they just focus on how much that infant is going to cost everybody.
Because -- you know? -- if the lines like those actually convinced folks, it seems that Peter Singer wouldn't command such a . . . what? A following? A respect? An esteem??
What this is really about is recovery. Paul Longmore's "cure 'em or kill 'em" explanation is certainly accurate.
I could rant on and on but I think I'll stop and let you folks take up the rant.
The story in the London paper has a cute photo of Baby Charlotte. And it's got a nice section for comments. You might want to visit:
We must debate mercy killing of disabled babies, say top doctors
Yesterday SOFEDUP held what they called a "media availability" to raise hell about the continued inaccessibility of Brooklyn College and the City University of New York -- CUNY -- and show reporters around campus so they could see the barriers for themselves. SOFEDUP is thinking about suing if the colleges don't get accessible, they say -- and soon. They're so fed up!
According to their press release (which doesn't appear to be online) they have
many grievances, which include, but are certainly not limited to locked elevators, lifts that have been broken for five years, automatic door openers that don't work and most egregious of all, action taken by the college this week to lock students with mobility impairments out of the library. . .
About that last:
Beginning earlier this week gates and caution tape suddenly popped up in front of the library, blocking off the accessible entrance to the library. Tiny signs posted on the gates read, "FOR HANDICAP ACCESS PLEASE USE REAR DOOR," but it is not actually the rear entrance, but rather the freight entrance, which Brooklyn College keeps locked. . . .SOFEDUP says that the library incident is just another instance of widespread discrimination against students with disabilities. Locked elevators, steep ramps, broken lifts are just a few of the many grievances that they have with the College. In a letter dated October 11th, 2006 SOFEDUP aired some of their grievances to top Brooklyn College officials, including College President Christopher Kimmich and City University of New York Chancellor Matthew Goldstein demanding an immediate redress of grievances. The letter also presented them with an ultimatum - reply within seven days or the students will protest. Three weeks later no administrator has replied and plans for demonstrations are underway. . .
SOFEDUP doesn't have a website yet -- although you can see that sofedup.org is registered with godaddy.com -- but the group's been around since the early 70s. You can read a little bit of their history in this transcript of a talk by longtime NYC disability activist Pat Figueroa, archived at Berkeley's Bancroft Library here. (Or download the audio file here.) Pat took over SOFEDUP back in the early 70s, and met his wife through the group.
Back then, says Pat in the transcript, the college didn't seem to have a clue about access -- they planned to ramp two steps of a 4-step entrance, evidently -- read it to believe it! And it seems 30 years on, problems continue.
So it's no wonder they're So Fed Up!!
By the way, if you don't know about the Bancroft Library's collection of materials on The Disability Rights and Independent Living Movement, you're in for a real treat. Click on the link and start reading about disability rights history from the folks who made it!
TUCSON, Ariz., Nov. 1 /U.S. Newswire/ -- Jerry Lewis, national chairman of the Muscular Dystrophy Association (MDA), has asked U.S. Health and Human Services Secretary Michael Leavitt to postpone new Medicare pricing and coverage policies for power wheelchairs, citing the policies' negative impact on people with muscular dystrophy and other severe disabilities.
For once, I'm speechless. The man we love to rag on, the man who we've said never does anything other than hawk the cure...
Yeah, speechless. But happy.
Good for Jerry Lewis!
Bill Stothers isn't speechless, though. Read his blog about Lewis's action here (and you gotta love Stothers' newly-coined term, "mediterror").
Last week I blogged about this horrendous federal decision. Read about it here. Let's try to see if Jerry's speaking out will have any influence.
Read the full press release from Jerry here.
]]>Why am I not surprised?
From the story:
People with disabilities and their advocates, a state attorney general, and the Department of Justice have filed numerous lawsuits, including in California, New York, Arizona and Alabama, alleging violations of the disability access provisions of the 2002 Help America Vote Act (HAVA). The Act requires states to provide at least one voting machine accessible to voters with disabilities in each polling place by January 1, 2006 and provides funds to improve access at polling stations.
Right. And it's often just being ignored.
What's going on in Westchester County, NY, is a good example. Last week, the head of the Westchester Center for Independent Living criticized the Westchester County Board of Legislators for considering a resolution supporting the county's continued use of lever-style voting machines.
The resolution, introduced by Legislator Thomas Abinanti, D-Greenburgh, calls on Westchester to join Suffolk County in suing the state Board of Elections for the right to continue using the lever machines, described as "reliable, user-friendly and cost-effective." (Story is no longer available online.)
User-friendly? To everyone but people who are blind or who can't pull levers.
This kind of stuff is going on all over the country.
Because of the furor over fraud potentials of electronic voting (see our story written this time last year), what could have become an accessible, inclusive act of citizenship -- voting -- is shaping up to get stuck in that perennial solution of "special for the handicapped": Rather than communities updating their voting systems with electronic systems (yes, yes, with paper trails!!) they opt to stick with old-fashioned voting and one new machine -- special -- at each polling site. This piece from the Santa Cruz Sentinel tells a story that's being repeated in towns nationwide.
And Santa Cruz may even be better than most. A story out Monday from the Boston Globe reports that at least two-thirds of Massachusetts' 1,700 polling places "will not have voting machines to accommodate the disabled on Election Day, according to the secretary of state's office." (Read State Lags on Voting Machines for Disabled from the civilrights.org website.)
And do read
Politicizing Accessible -- uh, Electronic -- Voting. Comment there or here -- but do comment!
The governing board of Gallaudet University revoked the appointment of the school's incoming president yesterday, giving in to the demands of students, faculty and others whose protests have kept the nation's premier school for the deaf in turmoil for the past month. (Read the story.)
Read Board of Trustees' letter here.
Read Fernandes's statement here.
At Gallaudets, protesters celebrated (view quicktime video).
"Now that the protest is over, the work begins of evolving a new system," writes Diane Rez on her blog.
The partying will end and it is back to business as normal while the Board of Trustees get to the business of repairing Gallaudet.For the rest of us, we have a lot of self-examination to do.
What does it mean to authority and governance now that constituents have successfully proven that they can influence a board of trustees to reverse its decisions?
Many in the Gallaudet community are posting such musings now. Find them through DEAFREAD.
Officials say the California elections code requires people who are unable to write their signature to make a mark in front of a witness.But . . . members of People First of SLO, a self-advocacy organization for people with disabilities, say their stamps are their personal signatures.
A mark such as an X indicates they are illiterate, they say, and requiring a witness impairs their ability to vote privately and independently, as required by the Help America Vote Act of 2002.
So they are fighting at the state level to see the elections code changed to allow for their disabilities.
Amazing that in 2006 this kind of battle would have to be waged at all.
Read the entire story here.
]]>I mentally file this under the title "The revolution will be blogged." Things are changing rather exponentially, as William Loughborough likes to remind us, and the blogging of the Gallaudet protest is a good example. I'd made that point in an earlier post, but now, weeks later, it's even more obvious.
I recall a story of long long ago -- well, long long ago in cyberspace terms -- about the Tiananmen Square massacre, and the role email played in getting the word out to the larger world. Back then, email was in the heyday blogging's now in. The story, as I recall it, told about how young Chinese protesters and observers were sending messages and almost reporting in real time via email.
The story's sketchy now and I'd have no idea how to even find it. I think it was a New York Times story but actually I'm not sure.
Joe Shapiro's story on the blogging about Gallaudet made me think of that older story, and then I thought of something else:
I thought about how my local newspaper (a mere shadow of its former glory, back in the day when it was independent and not owned by the bottom-line driven Gannett chain), and about how it's not reported a word about the Gallaudet protest.
And then I go back to Google News a lot to see who's reporting what about the ongoing meltdown at Kendall Green. And I see that there's really not all that much reporting. It's going on in DC, but not too much is being picked up by outlets outside the Beltway.
In other words, it's not a national story.
Even though I suspect it's pretty historic to have an entire university arrayed against a new president -- the faculty, the students, the alumni.
Imagine the stories and discussion if this were Harvard!
Or a big state university.
Or -- I wonder? -- any university other than Gallaudet. Gallaudet, after all, is a "special" place -- for The Deaf. (And by capitalizing "Deaf" here I'm not merely conforming to the Deaf culture's preferred usage; no, I'm making a point that many people see this as another Them group -- you know -- The Blind or The Deaf or The Disabled. One of the "The's.")
I also find myself thinking about the 504 protest that lasted 28 days in San Francisco's federal building back in 1977. (Joe Shapiro did a good 25th anniversary piece on that one, too -- here.)
And I find myself sort of comparing the two, in the sense that they are major protests that seem to occur not exactly out of the public awareness, but on its fringes.
More to the point: it seems that the mainstream media don't see them as "important to society." The public -- and the mainstream media -- find them interesting, of course, and worth a story or two. But they seem to be about "them" and not "us" -- whereas such a protest at Ohio State or even Colby or Centre colleges -- small private colleges -- would seem to be about "us." You know, "our kids" at colleges -- not The Deaf.
Maybe none of this makes much sense. And I'm not sure that what I'm sensing is really correct. It's more of a feeling, and although there's probably some way to really determine if it's an accurate perception or not -- with news searches, etc -- I don't have time to do that right now.
I think that probably at the bottom of all this musing, though, is a kernel of something about "special."
A couple of weeks ago blogger Elisa Abenchuchan reported that the Gallaudet administration was "refusing to allow its interpreters to work at the protest sites."
That got me to thinking about the concept of free speech when the speakers are perceived as "disabled." I know there's this big debate about whether "Deaf" equals "disabled" and I'm not going to get into that now. But the point is this: free speech for someone who needs an interpreter because they're seen as ... well, let the gallaudet protests blog explain it:
From A Suggestion to the Media:
what strikes me about this issue is that the administration, and many of the protesters who are outraged at the denial of interpreters [seem to consider] interpreting services as something that deaf people need in order to accommodate a deficit. when deaf people accept this perspective as fact, it is internalized audism and linguicism, tacitly asserting or believeing that hearing/speaking people are normal, and deaf/signing people are impaired, and in need of special help. think about it who is handicapped when hearing news reporters want to interview students but don’t know sign langauge? the hearies!!why, in god’s name, don’t the news stations and newspapers hire their own interpreters? ADA, anyone? they certainly have the funds, and if they really want to get a story with actual content in it, they need to be able to communicate with protesters. therefore, they need to start bringing their own sign langauge interpreters. note that i do not refer to them as “interpreters for the deaf.” they are interpreters for EVERYONE who does not share the same language/modality as the person they want to talk to. hearing people, especially when arriving onsite where there are hundereds, thousands of sign language users, are the ones who are handicapped. i’d wager that, as hearing people, their communication skills - the ability to make themselves understood visually and find a way to understand and clarify what someone is saying - gravely pale in comparison to deaf people, who have spent their whole lives refining the art of communicating with people who have poor visual communication skills . . .
There's more to that entry and it's all very good stuff. Read it all.
I focused particularly, though, on this line:
"why, in god’s name, don’t the news stations and newspapers hire their own interpreters?"
Yep; that's the right question to be asking. I often think about this issue when the source is someone with CP, too.
And I always think it interesting that the way the interpreting is handled is often so different from when, for example, the reporter is interviewing a source from, say, an African nation. Usually the listener KNOWS an interpreter is speaking -- the convention has often been to have the source begin speaking in their own language, followed a few seconds later by the interpreter's voice.
And rarely, it seems, does the reporter note that "So-and-so talked to us through an interpreter." Or maybe they do that more now than they used to.
In my opinion, handling an interpreter should be the same whether the interpreter is for somebody speaking a "foreign language" or someone using ASL or a letterboard or with a CP accent. The treatment should be the same.
Here, the Gallaudet students are making the point that the hearing people need an interpreter so the Deaf folks can understand the reporters. A subtle but good distinction, which shifts the dynamic.
The blog entry continued,
get cracking, all you hearing media mavens! you owe it to your readers/viewers to make yourselves understood, and to understand what interviewees are telling you. when covering the events at gallaudet, bring a sign language interpreter with you.
I should find out whose interpreter NPR used.
NPR is better than any other U.S. media at covering disability issues. And they get another kudo for telling website visitors that the Shapiro story is a "full transcript" of the audio.
]]>The decision, says Mark Smith over at Wheelchair Junkie, is allegedly about saving costs. But it's "a strikingly poor socioeconomic decision":
The most fundamental purpose of a power wheelchair is that it preserves health and fosters independence - and the maintaining of one's mobility adds up to tremendous governmental cost savings. Studies show that over the past eight years, among Medicare recipients, power wheelchairs saved the government $10-billion in healthcare costs, showing that, on average, a power wheelchair user required $14,000 less annual healthcare than beneficiaries of comparable demographics and conditions who went without powered mobility. These statistics stem from the fact that power wheelchairs facilitate independent living by reducing physical injuries and foster enhanced mobility required for daily living, decreasing needed support services . . .
Read Smith's entry, When Less Costs More.
Take action here.
]]>And it's continuing, and disgusting. Kevin has the latest in his post from yesterday , And the battle rages on in Indiana . . .
He provides lots of links, too -- so you know it's not just his say-so.
The feds won't do anything about it, it seems. They seem not to care. But it's the disabled people of Indiana, across the river from us, who suffer.
]]>