Wednesday, September 28, 2005
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.