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Disability and disasters

So I did my little ten-minute presentation this morning, to help kick off the Pennsylvania Association of Rehabilitation Facilities conference here at Penn State—together with disability studies scholars Doug Biklen of Syracuse University and Michael Dorn of Temple University.  We were asked to speak very generally on the representation of people with disabilities; Michael offered a historical overview of institutions charged with “administering” disability in the Philadelphia area, and Doug spoke of the representation of mental retardation in films like There’s Something About Mary, The Eighth Day, and Rain Man.  And then I went on a rant about Hurricane Katrina and disability issues.  The next couple of paragraphs (up until the asterisk break) are part of that rant.

I’m sure you’re aware (I said to a breakfast audience in the Nittany Lion Inn ballroom) of the debate that erupted in the media in the days after the levees broke—first when it became clear that many of the individuals trapped in the Superdome and the New Orleans Convention Center were black, and then when it became clear that so few reporters knew what to make of this.  When the media did get around to noticing the obvious, the results were often embarrassing, as when, on September 1, Wolf Blitzer said, “You simply get chills every time you see these poor individuals . . . many of these people, almost all of them that we see are so poor and they are so black, and this is going to raise lots of questions for people who are watching this story unfold.” One wondered just how black these poor people would have to be to be “so black,” but yes, it did raise lots of questions for people who watched that story unfold.  Some of those people raised legitimate questions about race and poverty, and some simply associated black people with looting.  And once again, race became “visible” in American politics in the way it does every decade or so—which means, unfortunately, that lots of white people slapped their foreheads and said, “oh yeah!  we forgot about race!  dang!” while lots of other white people said, “we never forgot about race, and that’s why we keep our shotguns ready just in case those people want to escape New Orleans by walking into Gretna,” and still other white people said, “why are you making an issue out of race again?” You know, we had another one of those conversations about race.

But even as we watched the stunning spectacle of people dying of starvation and thirst in the streets of an American city that seemed to have been abandoned by every form of government, I was struck time and again at the fact that while race had become “visible,” disability had not—even though we were watching the deaths of so many people with disabilities.  Again, most of them were so poor and so black, but Wolf Blitzer did not go on to say that many of them were also so disabled.  It is not that their disabilities were invisible; paradoxically, it was quite the contrary.  Who among us can forget that iconic image of the dead woman in the wheelchair outside the Superdome, covered only in a blanket?  That might well have been the very symbol of Katrina’s devastation in New Orleans, the wheelchair—not the woman, who was not visible, but the wheelchair itself.  For if you used a wheelchair, and you lived in New Orleans in late August, you were very likely subject to something I will not hesitate to call terror.  From the Cox News Service:

SLIDELL, La.—Alone in her one bedroom house, confined to a wheelchair, Fluffy Sparks did the only thing she could think of when Hurricane Katrina’s flood waters rushed into her home: she prayed.

“I prayed like I’ve never prayed in all my life,” said the 46-year-old woman, who watched in terror as the waters rose to under her chin as she sat in her wheelchair. “I told God, ‘I can’t believe you’re ready for me now. Don’t let me die in this water here by myself.’”

Somehow Sparks managed to haul herself up onto her small, wooden-legged kitchen table. Miraculously, the water stopped rising just as it reached the table’s top.

“I’m breathing,” she said Tuesday morning, sweating in a mud-stained gown and watching a parade of people wading and passing in small fishing boats down Fremaux Street, which was still covered by thigh-deep, but thankfully receding waters. “It was horrible, and it’s still horrible, but I’m breathing.”

Sparks’ terrifying story is just one of hundreds, possibly thousands, that will be shared for generations in Katrina’s aftermath.

One more of those stories, from USA Today:

Mark Smith of the Louisiana office of Homeland Security and Emergency Preparedness said at midday that it was still “too severe for us to put people on the ground.” He had supplies and National Guard troops poised to go in to help those stranded.

“We’re not going to add to the list of victims by going in prematurely,” he said.

As he spoke, his Blackberry rang with a text message.

“Oh, this sucks,” he said. He held it up, showing the message: “Help!” It described an emergency call from a person who uses a wheelchair in Metairie, a New Orleans suburb.

Smith shook his head. “There’s nothing we can do for this person right now.”

That, I think, might well have been the motto of our Department of Homeland Security: there is nothing we can do for this person right now.

Now, of course, disability groups knew perfectly well what the hurricane meant for people with disabilities.  They knew also that in Biloxi, Mississippi, a city of about 50,000 people, 26 percent of residents are people with disabilities.  That in Mobile, Alabama, a city of 198,915 people, 24 percent of the residents are people with disabilities.  And that in New Orleans, a city of about 484,000 people, 23.2 percent of residents are people with disabilities.  But if you got your reports about Katrina from anyone other than groups organized to serve people with disabilities, disability simply not was mentioned as such.  What do I mean by “as such”?  We saw people in wheelchairs.  We saw patients on gurneys.  We read about people abandoned in nursing homes; we heard of people with cognitive disabilities trapped in houses with rising water.  We heard about the sick and the elderly and the dying . . . but nowhere in mainstream media was this rendered, or understood, under a more general heading of “disability.” And at no time did anyone say, my god, what does all this mean for people with disabilities?

And the consequences of that, I believe, were devastating.  First, of course, because it demonstrated that our government is so profoundly inadequate when it comes to disability preparedness in emergencies.  Second, because as the floodwaters rose, you could actually hear politicians and pundits blaming the people of New Orleans for failing to evacuate.  This was our very own senator, Rick Santorum, on September 4:

I mean, you have people who don’t heed those warnings and then put people at risk as a result of not heeding those warnings. There may be a need to look at tougher penalties on those who decide to ride it out and understand that there are consequences to not leaving.

You might object that Senator Santorum wasn’t thinking about people with disabilities when he made this remark.  And if that’s what you’re thinking, well, thanks—that’s precisely my point.

Now, it’s quite true that many politicians and pundits have no idea whatsoever what it is like for a poor person not to have the money on hand for an evacuation.  But it’s apparently even more true that many politicans and pundits never stopped to consider that one-quarter of the population of an American city might be made up of people who cannot, for physical or other developmental reasons, pick up and leave when they are told.  And that’s what I mean when I say that in the Gulf Coast, disability was invisible as such, even when we were looking right at it.  Individual persons with disabilities were depicted as objects of charity, or horror, or pity; but disability as a category of human identity, disability as a social and political fact, disability as a factor in public policy remained inconceivable.

*****

My point, of course, was that Katrina is not an aberration.  On the contrary, it is a horrific example of business as usual that no one is talking about Katrina or Rita in terms of its impact on people with disabilities except for that tiny handful of groups whose job it is to administer care for people with disabilities.  Think about this way: at no point in our national debates does an issue turn on the question of how policy X or policy Y will affect people with disabilities.  Here and there, an elected official might take to the floor for five minutes to say, “these proposed budget cuts will have a devastating effect on services for people with disabilities,” but once those five minutes are up, the country moves on to other things, like tax cuts.  Even worse: on the rare occasions when disability is acknowledged in the public sphere, people with disabilities appear as infantilized props for right-wing extremist crusades – as in the Terri Schiavo Media Circus of this spring, or Sam Brownback’s Opus Dei showcase last week.

And because my plenary panel at PARF was followed immediately by a panel on rights and responsibilities in disability law and policy in Pennsylvania, I quickly learned that I didn’t even know the half of it.  To wit: you may have already heard that the ghouls who infest (and govern!) our body politic are planning to pay for Katrina cleanup by lining the oily pockets of Cheney’s Halliburton kleptocrats and taking the money from public radio and other “liberal” causes.  And you may have heard that Medicaid is going to be slashed to the bone and beyond.  But unless you work with a disability organization, I bet you didn’t know that Medicaid is the major funding source for hundreds of disability-advocacy organizations, from residential to vocational to medical facilities across the nation.  In other words: hundreds of people with disabilities were killed in Katrina.  The health crisis associated with Katrina will have a disproportionate impact on—indeed, will produce—still more people with disabilities.  And the crony-capitalist kleptocrat kleanup of Katrina (with Karl Rove in charge of budgetary oversight) will be paid for by cuts in services to people with disabilities.  When I say people with disabilities are invisible even in their visibility, this is what I mean.

Two of the speakers in the followup panel explained why this is so in Pennsylvania.  One remarked that our state legislators are loath to increase “welfare spending,” and have to be “better educated” on the subject.  This means, as the speaker explained, that legislators have to be made to understand that increases in Pennsylvania’s “welfare spending” are in fact increases in local health care costs, and that—as one legislator advised him—“not welfare spending as you traditionally know it.”

What does that mean, you ask?  Good thing you asked!  Another speaker quoted a legislator who was still more explicit, though not so explicit as to say what he really meant: Medicaid, said this lawmaker, is seen by many of my colleagues as a program that allows poor single mothers to have more babies.

And there you have it, my fellow Americans.  We already knew that the United States has the worst health-and-human-services policies, for people in poverty, of any industrialized nation, and we already knew that this had everything to do with the fact that many Americans, and their elected representatives, think of the poor as so many shiftless Negroes.  But now we have another dynamic to consider: according to the logic of stigma and abjection by which American politics operates, disability advocacy groups will be funded under Medicaid to the extent to which they can rhetorically distinguish people with disabilities from African-Americans in poverty.  From single mothers and their innumerable babies.  From welfare spending as you traditionally know it.

Again, if you’re familiar with the issues and policies concerning disability in the U.S., you know that many people with disabilities are poor: the unemployment rate for people with disabilities is somewhere between 60 and 70 percent.  And you know that some people with disabilities are, in fact, African-American.  And so you’re probably wondering how disabled African-Americans in poverty—like many of the people who remained in New Orleans, who were so poor, so black, and so disabled—can possibly distinguish themselves from “welfare spending as you traditionally know it” and “poor single mothers,” since, of course, these are our elected officials’ traditional code terms for race.

I’m wondering that too.  I was kind of hoping that we could retool the entire national logic of stigma and abjection so that unbearable shame would accrue to any elected official who tried to blame people for not leaving New Orleans, or any elected official who tries to pay for the rebuilding of the Gulf Coast by cutting disability services, but, as always, I’m open to more practical suggestions.

Posted by on 09/28 at 09:39 PM
  1. For shizzle.

    Having a single payer heath care system would be a good start.  That would make it more difficult for them to slash funding for services that primarily benefit that poor and disabled—they’d have to cut funding for the entire system, which would invite a political backlash.

    Establishing a Basic Income Guarantee would be helpful for largely the same reasons.

    Posted by Nick  on  09/29  at  12:34 AM
  2. Ah, yes. The people in New Orleans who were just too stoopid to evacuate when told to do so. Michael, was it your Senator (I get the bast**ds confused) who said we needed to charge these people criminally for putting rescue workers needlessly at risk?

    Well, the disabled and the poor of New Orleans have already been repeatedly re-victimized several times over, post-Katrina. This is just yet another painful layer. Just how many times is it possible to keep re-victimizing the victims? There seems to be no bottom. I guess it just keeps going until the no-bid contract money runs out for Dubya’s friends.

    Oh, no need to pay attention to Black folks in wheelchairs. You know most of them are just faking it for the welfare money.

    Posted by  on  09/29  at  04:42 AM
  3. Oh, no need to pay attention to Black folks in wheelchairs. You know most of them are just faking it for the welfare money.

    I’d wondered about this, O.G., especially after I saw the first fifteen minutes of Trading Places.  And Nick, that’s why your gulag-esque “single payer” system wouldn’t work:  it would take away people’s incentive to become elected officials and get themselves some good, reliable government-run health care.

    Posted by Michael  on  09/29  at  06:52 AM
  4. I’ve got a basic, practical, nuts and bolts question.

    When are disabled people likely to be on Medicare and when on Medicaid?  I’ve known of lots of disabled psychiatric patients who were on Medicare--which wasn’t great, because it didn’t cover their prescription drugs.

    I don’t think you got treated much different in the Katrina aftermath based on the distinction--and anyone in custodial care was probably on medicaid--but I do wonder whether the Medicare disabled get thought of differently by legislators.

    Posted by  on  09/29  at  07:11 AM
  5. As I was reading about all the disabled that will be *created* from this disaster, I was thinking about all the disabled already created and still to be created by the war in Iraq.  There are thousands, and from what I understand, funding for even their medical treatment is under the knife.

    Posted by Laura  on  09/29  at  07:12 AM
  6. To be on Medicare you have to be receiving social security benefits. Some Social Security programs like SSI (which is for the disabled) are means tested, others are not (e.g., survivor benefits for those who were disabled as minors). Medicaid is means tested and separate from Social Security. It’s funded by states and the feds, and administered by states. Determination of eligibility for the disabled is usually handled by the same agency for Medicaid & SSI. The usual route is to start with SSI and then try for Medicaid.

    Some people can be eligible for Medicaid, but have too much income, so they have to “pay down” their benfits (essentially bring their income down to the Medicaid eligibility level or pay some fraction of it, depending on the state). There are ways to shelter some assets, including insurance settlements, through special needs trusts so that disabled people don’t have to be detitute to qualify for SSI or Medicaid.

    Posted by  on  09/29  at  10:04 AM
  7. Appropos of my last post---one needs competent advocacy to get (& maintain) any of the entitlements, let alone navigate the other sources of services for the disabled. In dealing with the needs of a family member, was helped greatly by a lawyer who was originally trained (and practiced) as a medical social worker, and by having a responsive ad hoc network of providers who have put together a system for helping people with TBI in NE Ohio, where he was resettled (the whole thing is a long story that began with his mother’s sudden death). I had moved this family member from California, where it was impossible to do anything and all I could get from social workers where he had been treated was “tea & sympathy”. I had even less success here in Atlanta, which I have dubbed “the city that doesn’t work” ( ditto its suburbs and state govt). Good advocacy varies geographically, but involves a lot of luck, in terms of getting a good point of entry into a service system.

    Posted by  on  09/29  at  10:10 AM
  8. We already knew that the United States has the worst health-and-human-services policies, for people in poverty, of any industrialized nation, and we already knew that this had everything to do with the fact that many Americans, and their elected representatives, think of the poor as so many shiftless Negroes.

    The shiftless Negro is fill material for an intricate system of emotional and ethical levees designed to shield us from our own better natures. These levees are engineered to withstand all known legal and responsible moral argument and have been known to survive near-total collapse of society, eg civil war United States of America.

    Rumors that pictures / stories from NOLA have in any way damaged these levees are just that - rumors. Now get back to work.

    Posted by  on  09/29  at  10:53 AM
  9. Michael,

    Thank you for showing me the error of my thinking—that must have been the soup kitchen Marxist in me talking again…

    If anyone finds himself or herself wondering what kind of mentality it takes to justify the cuts you highlighted, I suggest Charles “Bell Curve” Murray’s piece in the Wall Street Journal today: “The Hallmark of the Underclass” (sorry, no free link)—a perfect example of the intellectual side of the widely-predicted post-Katrina racist backlash.

    Posted by Nick  on  09/29  at  11:23 AM
  10. Let me apologize in advance for going all Buddhist on y’all. But there’s a wicked thread that runs through everything these morons touch.

    Posted by Roxanne  on  09/29  at  01:41 PM
  11. ...And this administration proclaims to anyone who will listen that it “values life.” Sure, if it’s something that indulges the right’s high-profile religio-political agenda, such as abortion or euthanasia. But just plain old, every day, bread-and-butter morality? So not sexy--I mean, where’s the rapture in that? Conservatives’ so called “moral values” are rotten to the core…

    Posted by  on  09/29  at  03:05 PM
  12. "To be on Medicare you have to be receiving social security benefits. Some Social Security programs like SSI (which is for the disabled) are means tested, others are not...”

    Almost completely accurate.  There are small programs whereby people recieve some medicaid benefits without being Soc. Sec. recipients, such as the “Autism waiver” program.

    Posted by  on  09/29  at  03:22 PM
  13. Right on the money, Michael. I guess Sen. Insanetorum and his ilk just feel those folks could have just rolled those wheel chairs right out of town, if they weren’t so shiftless.

    I’ve caught some recent wing-nut talk about rebuilding New Orleans in such a way to keep the “Negroes” out of town, leaving it for God fearing Republicans. These people do have NO shame!

    Posted by  on  09/29  at  04:04 PM
  14. Roughly one fifth to one quarter of the populations of Biloxi, Mobile and New Orleans are disabled?

    Sorry to come off sceptical here, but may we have the source for these statistics, and the definition of ‘disabled’ that they used?

    Posted by Doctor Memory  on  09/29  at  04:15 PM
  15. I never really recognized my own prejudice toward the mentally handicapped until my daughter showed signs of severe autism.  I had thought that I was an open-minded person, but I subconciously equated moral worth with intelligence.  Conciously, my thoughts on rights for the disabled were all the right ones, but mostly I just didn’t think about them.  I was the intellectual equivalent of a limousine liberal who votes the right way but can’t name a single minority who isn’t famous.  Ignorance is probably the larger part of bigotry.  It started sinking in very quickly just how much my daughter would be denied, despised and forgotten. 

    I’ve learned another lesson from this.  While none of us reading this blog would belittle or humiliate someone who was clinically diagnosed as mentally retarded, we might do it to those who are of modestly lower than average intelligence.  Why?  Someone with a 90 IQ is likely to present an argument with obvious non-sequiters, malapropisms and other mistakes.  Is this grounds for humiliation?  I realize there is some implied consent - step into the ring and you consent to be hit - but you don’t have to take brutal advantage of a less well-equipped opponent.  I suppose there is a danger of condescension too, but you can win an argument without glorying in your own intellectual superority.  No one has earned their IQ through good works for humanity.  The point I’m trying to make is, if you are not feeling empathy for the guy with the 90 IQ, you are probably not feeling it for the one with a 50 IQ either, you just don’t realize it.

    I hope I haven’t come across too preachy.  I feel like the recovering alcoholic denouncing the evils of demon rum.

    Posted by  on  09/29  at  04:31 PM
  16. While it would be so nice to go all satiric, there is too much here that merits serious consideration.  Bill Bennett (gambler extraordinaire) made a comment yesterday that reflects the current conservative slant on all things “welfare.” He suggested that if we aborted all of the “black” babies the national crime rate would go down.  I have to believe--given his own textual history--that he would just as easily say that ridding our society of people with disabilities would make the cost of health care go down.  There is a deeply ugly taint of eugenics among the wealthy elite who feel that “their” nation would be much better off without having to “pay” for all those who
    “prefer” to live off the government dole. 

    Laura mentions those returning from Iraq and Rich mentions TBI.  A recent study presented by Doctors without Borders(yes i know it is a commie pinko fascist proto-totalitarian group) shows that the number of TBI disabilities among the troops who have served in Iraq and Afghanistan will be astronomically high, sufficiently so to bankrupt most long term care funds in those states that have provided their disproportionate share of troops; and among those states: Louisiana and Mississippi.  Congress this week laughed, or better hiccupped, at increasing long term veterans care.  If these people can’t even see their way to taking care of those that they forced to sacrifice for them, we can never expect them to step forward in providing necessary funds for the unseen millions that they would just as prefer didn’t exist.

    Posted by  on  09/29  at  05:22 PM
  17. We’re already socially and economically invisible.  We were before Katrina and will remain so.

    Why? Because in their gut, the able bodied don’t want to imagine themselves with impairments. They all have, to a greater or lesser degree, the time wasting frisson of “I couldn’t imagine living like that.” That’s why their media doesn’t cover us, that’s why their legislature finds it easy to chop programs that are presently inadequate to hold off poverty and neglect.  We have to rely on cares that would as soon steal our wordboards, gut our CD collection and make off with our computers before actually assisting us with activities of daily life.  I mourn those patients at St. Ritas and elswhere that were left to drown or cook in the heat...But surprised?  Not one whit.

    What bothers me more is an obvious wake up call that the baby boom generation is ignoring.  They’d best become more adaptable, more comfortable with working around and through limitations, because they are facing their aging, which will give them some clues as to how the disabled have had to handle their entire lives.  Perhaps as more and more of that generation confronts aging, there will be enough moments of clarity to create a workeable healthcare system, to work for visitability in homes, to keep the disabled out of the more expensive prison of the nursing home. 

    Katrina won’t do it, nor will the next natural disaster.  But the boomers gaining a visceral understanding of the compromises necessary with advancing age that mirror some of the daily experience of the disabled just might do it.

    Even so, I’m not holding my breath.

    Posted by Jean  on  09/29  at  07:27 PM
  18. Figures I’d misspell a word when posting to a literary person’s blog (sigh) “caers” should read “carers.”

    Sorry

    Posted by Jean  on  09/29  at  07:32 PM
  19. Roughly one fifth to one quarter of the populations of Biloxi, Mobile and New Orleans are disabled?

    Sorry to come off sceptical here, but may we have the source for these statistics, and the definition of ‘disabled’ that they used?

    No problem, Doctor Memory.  My source is the National Council on Disability on Hurricane Katrina Affected Areas.  I know it sounds hard to believe at first.  But think of it this way:  when the ADA was passed in 1990, everyone—on all sides—agreed that the number of people in the United States with a physical or mental impairment that substantially limits one or more major life activities was roughly 49 million, or about 20 percent of the population at the time.  We’re not talking about things like high blood pressure or myopia here, folks—if we were, as a 1999 Supreme Court case pointed out, we’d be talking about more like 160 million Americans.  We’re talking about “substantial limitations,” and “impairments” that include things like mental retardation and mental illness.  Needless to say, you wind up with a higher percentage of people with disabilities in areas where there’s a higher percentage of the poor and the elderly.  So one-fifth to one-quarter sounds about right.  But I keep forgetting that the numbers sound impossibly high to people who aren’t familiar with them.  So a little skepticism is OK with me.

    And Jean, thank you for a most righteous comment.  I didn’t even notice the typo on “cares.”

    Posted by Michael  on  09/29  at  08:49 PM
  20. Njorl;

    Your comment was well put, if you ask me, which no one did.

    Someone with a 90 IQ is likely to present an argument with obvious non-sequiturs, malapropisms and other mistakes.

    Having started my intellectual career at a school for children at the putative other end of that spurious metric, I am here to tell you that the rate of non-sequiturs, malaprops and other mistakes in an argument is not at all inversely proportional to the arguer’s Stanford-Binet scores.

    My experience as an editor suggests to me that people of “higher intelligence” make such errors at a greater clip - like the old joke about the supercomputer making mistakes a thousand times faster than its predecessor - and with a much stronger sense of entitlement.

    I had thought that I was an open-minded person, but I subconciously equated moral worth with intelligence.

    Two words: Henry Kissinger.

    Posted by Chris Clarke  on  09/30  at  10:57 AM
  21. Michael, I have been in correspondence with the family of a quaraplegic and his 83 year-old mother who died in Chalmette, abandoned during the rescue efforts. Not people who could be rescued from their roofs, these. They were on priority lists to be evaculated and had been evacuated before past hurricanes 3 days in advance. This time, there was some SNAFU, and they were passsed over. No one authorized to go into the area went to check up on them until Friday the 23rd. If they hadn’t drowned, what would have become of them? How many layers of supposed security net had to fail for this to be possible? A lot.

    Posted by Kathryn Cramer  on  09/30  at  07:26 PM
  22. Thank you so much for ranting about something that my writers are constantly publishing at my site http://www.audacitymagazine.com .

    When is enough enough?

    I think it is a huge tragedy that the media has barely said anything about the physically disabled people trapped in homes or shelters or even the SUPERDOME and no one cares.

    Hey if you are ever in the mood to write an article for my magazine please let me know!

    You are definitely an audacious person!

    Posted by Nathasha Alvarez  on  10/01  at  01:58 PM
  23. I’m not getting at doctor memory, but his or her scepticism is, in itself, enlightening.

    The fact is that most people with disabilities, (myself included) don’t go around advertising the fact. Where the disability impairs us, we simply don’t do the thing that is impaired, or find a way around it.

    And hence, as Jean says so eloquently, we are invisible.

    I have a problem walking. I CAN walk, but do it slowly. It is also dangerous because I fall over easily. As an example of my invisibility, you don’t see me in public places, out shopping at peak shopping times, because I am not there. I am at home shopping online because crowds knock me over. When I am out shopping, it’s easier to get a parking space when everyone else is at home.

    We don’t see disabled people in the workplace, because they are often at home, impaired from working.

    I live in England and we have slightly different legislation and attitudes. On the one hand, Tanni Grey-Thompson, who is a wheelchair athlete, is a national hero with celebrity status. People stay in to watch her race in the Paralympics. On the other hand, when she won a major sporting award they forgot to build a ramp and she couldn’t get onto the stage. She probably couldn’t park outside either because disabled parking is a courtesy and not enshrined in law (and plenty of arrogant able bodied people believe it is simply a reserved space for their American Style SUV’s)

    I am not in a chair and to look at me it is only my walking stick that gives my condition away. I have spent many years not using the stick and not complaining about the pain. When I began use it at work kind, generous, decent friends found it hard to accept.Some even made horrendous inappropriate and ignorant comments or treated my impairment as a joke.  I am thinking that doctor memory is an honest, sympathetic, decent person, but has been caught by the trap that Njorl describes.

    Disability is not (dare I say fashionably, or pressingly)’political’ in the way that race is and that is why it is not on the list of tick box topics that politicians have to cover. America (and so it should) seems to be racked with guilt over race issues. But you can’t really feel collectively guilty over genetic chance or an accident. Also, it’s just not sexy. You don’t get disability riots or disability murders to report, you can’t enjoy or romanticise the culture of the disabled, our version of the blues is the squeaking of wheels and the creaking of joints. For the media the stories of overcoming disability are just so rare, given that many people die as a result of diabling disease, birth defects etc. And those disabled people who are successful, well, you just don’t put them on a magazine cover or the TV because, well, it makes us all a bit uncomfortable.  And...(unlike racism, mysogeny, homophobia, xenophobia) there isn’t even a word for prejudice against disabled people. Disability itself is a cultural contruct in the way that skin colour can never be. It’s too easy to not notice and too difficult to think about. Hence it’s not considered to the point of it being taboo. Hands up if you’ve ever dreamt of sex with a disabled person? Hmmm...thought not.

    Okay, enough of the describing; lets get down to the positing.

    How do you retool the national logic of stigma and abjection? Simple amswer. Don’t vote for a selfish, self-serving government. In fact, vote the bastards out. Give money to opposing political parties. Stand up for the disabled in your own sphere. Hand your tax rebate checks over to advocay groups. If you are an academic reading this blog, write a paper with some slant on disability. Talk about this blog at your next dinner party, after all, you’ll be discussing ‘Katrina’ anyway. Give disabled people jobs. I have met people who could easily give me a job but won’t because it means adjusting something about the workplace. Make a stand on such issues. If you like, treat the disabled like you treat the recycling. YOU know that if you drive a hybrid and recycle your wine bottles, then you are making a little contribution to a cause (global warming) that your government denies. If you build a building, put a ramp in it. Appoint someone at your workplace to oversee disability issues. Even better: do it yourself.

    Sorry, that’s all I could come up with, the old act-local-think-global thing. I guess my main point was my first. It’s worth repeating. Vote the bastards out.

    Posted by  on  10/01  at  07:34 PM
  24. I beleieve disability advocates have to frame the argument to accent the positive.  I started by calling myself alter-abled instead of disabled.  It may not be a big step but shifts the focus from being unabled to differently abled and create an intellectual mindshift.  What do ya think of supporting such a shift?

    Posted by annie  on  10/01  at  09:09 PM
  25. Kathryn, this sentence—“If they hadn’t drowned, what would have become of them? “—made me burst into tears. Please email me if the family, or anyone in a similar situation, needs some assistance.

    black dog barking, I know you meant the following passage satirically, and it’s a seemly trope on its own.

    “The shiftless Negro is fill material for an intricate system of emotional and ethical levees designed to shield us from our own better natures. These levees are engineered to withstand all known legal and responsible moral argument and have been known to survive near-total collapse of society, eg civil war United States of America.”

    I’m wondering if you’re playing off of an incident described in “Rising Tide,” an account of the 1927 Mississippi River flood (I’m cribbing--as you may be--from Remnick’s essay in the Oct. 3 New Yorker, since I haven’t reached this point in the [excellent, appalling] book):

    “John Barry [...] quotes a New York Times account of a levee breach in Washington County, Mississippi, in 1912. An engineer who had run out of sandbags ‘ordered . . . several hundred negroes . . . to lie on top of the levee and as close together as possible. The black men obeyed, and although the spray frequently dashed over them, they prevented the overflow that might have developed into an ugly crevasse. For an hour and a half this lasted, until the additional sandbags arrived.’ The Times called the idea ‘brilliant.’”

    Posted by  on  10/02  at  08:48 PM
  26. Whoops—I meant to add this on preview.

    Annie, I think alter-abled works much better than “differently abled,” which just has too many syllables. That clunkiness opened it up to stoopid anti-PC-language mockery--totally unwarranted but socially sticky nonetheless. Language in usage seems to gravitate toward simplicity; anything adding complification will always be a hard sell.

    More generally, the problem with “alter-abled” is that it declares that the people so labeled not only lack certain abilities but also possess abilities unavailable to the merely abled. Which is a proposition I (tutoring CP kids, aunt of an autistic child, clinically mood-disordered myself) have no problem accepting.

    However, few people would chose life as a paraplegic, or a schizophrenic. That’s where the “alter” falls down. Fairly or not, it implies a super-hero-style compensation—you can’t walk, but you can FLY, right? The “Rain Man"/"Beautiful Mind” construct applies to various neurological dysfunctions--it’s okay if you’re fucked up, if you’re also brilliant. (n.b., no one, under any circumstances, benefits from the acceptance of flamboyant fucked-up-ness).

    I know there can be real and blessed compensations, for those who choose to see them, but simply declaring that they exist won’t work. Not until a significant percentage of families (and I have no idea what that percentage is) has incorporated a member who’s dealing with autism, loss of a limb, partial or complete blindness, dementia, etc., etc., etc..

    Demographics indicate that the above “until” moment is not far away. The Glorious Haymaker for Freedom has further accelerated that date.

    In the meantime—“altabled”?

    Posted by  on  10/02  at  10:12 PM
  27. Michael,
    I appreciate this post.

    Posted by  on  10/03  at  04:42 PM
  28. Annie and Vetiver : I am unsure that playing with language and coining words is useful. I am more inclined to think that treating each ‘disabled’ people as an individual might be the way forward. I often tell people that I walk slowly, that I simply need a cane. Its thorny. I wonder if ‘she has autism’ or ‘she is blind’ might be the way to go. After all, these are merely aspects of people that donl;t have to define them totally, in the same way as hair colour or being good at soap opera trivia are aspects of appearance and character.

    Vetiver, I agree that the overcompensation model is not wholly satisfactory, even though I often declare that I might not be good at walking but am extremely good looking to make up for it!

    Posted by  on  10/03  at  07:54 PM
  29. Salty dog wrote, “You don’t get disability riots or disability murders to report....” Lots of murders, actually, usually reported as “understandable.” That’s when the disabled person is the victim, of course. See http://www.neurodiversity.com/murder.html

    Posted by Jane Meyerding  on  10/07  at  03:58 PM
  30. Jane, I was just looking back at my comments and in strict sense you are correct. But I didn’t mean to say that you don’t get disability murders per se, just that it is not fashionable to highlight them and give them a prioritised name and status. It is about invisibility. As there isn’t a word for being anti-disabled, there isn’t an easy way to report these things. I tend towards thinking that language is a kind of mirror of the soul of society and that the lack of positive synonyms for disablity and the total lack of a word to describe prejudice against disability reveals the general underlying attitudes. Discrimination against us doesn’t merit a verbal category of its own.

    In general, it seems to me that certain social issues are ‘sexy’ and worthy of reporting, others not. Abuse of children is widely reported, abuse of the elderly not. Extreme poverty is ‘sexy’ but general poverty is not. Attacks motivated by gender, race or sexuality are ‘sexy’, attacks due to disability seem not to be. People are only too happy to deal with and confront issues that are simple to understand, like the colour of a person’s skin, which genitals they possess or with whom they choose to share said genitals. Those categories are dead easy to understand. Disability is such a broad and nebulous concept. Your Aspergers and my club feet both fall into the definition but the only similarity is that we repectively, as you put it so perfectly, tire ourselves out ‘passing’.

    I agree with your point regarding ‘understandable’ murder. It appears to me that violence done to disabled people tends to be filed under the slightly less serious, or at least more general sounding, categories of abuse or neglect. In fact, even the very low level violence of the ‘joke’ about someone’s condition or denying us physical, economic or social access often doesn’t register on the scale of outrage the way a ‘joke’ about, for example, someone’s race or the denial of social access due to gender tends to.

    The weblink you posted was both interesting and horrifying. Some of those stories were almost unbearable to read. What does it say about society’s attitude to disability when so many parents seem pushed into believing that murder is the answer, or think their disabled children are in need of exorcism? And why are they still essentially locking people up for being disabled and treating them in such a suspicious and medieval way?

    Posted by  on  10/16  at  10:26 PM
  31. http://www.CrisisSearch.com is a disaster related niche portal (search engine) and blogs I set up after the Katrina hurricane (in hopes to help). Find links (or submit crisis sites) for information on natural disaster to terrorism or submit helpful crisis websites wink

    Posted by Ex-Homeless Guy  on  10/18  at  03:24 AM
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    Posted by jaiveer56  on  10/28  at  01:19 AM

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