Through the Looking Glass of Advocacy

        Educators have long documented that students with disabilities face disadvantages in the acquisition of critical thinking, writing, and oral communication skills. While non-disabled adolescents participate in numerous summer educational programs, students with disabilities are frequently isolated, leading to a lack of self-esteem and experience that can assure success in higher education.

 The Autistic Self Advocacy Network of Northern Virginia makes the case for easy to find information about access to higher education, health services, housing, and accommodations for people who are on the autism spectrum. Their recommendations are designed for legislators in Virginia yet the clarity of their recommendations speaks to best practices when it comes to including people with disabilities on the "map" of citizenship.

Their recommendations speak to a national problem, one that's replicated in all 50states. People with disabilities and their friends and families can't get access to information and networks that will assist them in their efforts to get an education, gain housing, or find a job.

Many people with disabilities who have managed to graduate from high school find its very difficult to locate transition programs designed to help you get a higher education.

They will discover all too often that applying to colleges and universities remains a crap shoot when it comes to accessing effective programs that really take disability seriously.

Here in Iowa City the local school system has seen a considerable influx of families who have moved here from Chicago, many of them looking for access to special education for their children. The Iowa City School District most likely would earn a C plus when it comes to adequately provisioning programs and services for students with learning disabilities. But that C plus is far better than the miserable climate for LD kids in Chicago.

President-elect Barack Obama's choice for Secretary of Education Arne Duncan has a dreadful record when it comes to special education. The Justice For All carries the discouraging history of budget cuts and legal obstacles that Mr. Duncan presented to the special needs children of Chicago during his tenure as CEO of the Chicago Public School System.

As we enter the second decade of the 21st century students with disabilities of all kinds are in peril. Only 15 per cent of students with disabilities graduate from four year colleges. 70 per cent of pwds remain unemployed in the U.S.

Why would the CEO of the Chicago public schools cut the budgets for special education and then resist the justifiable legal action calling for the restoration of that funding?

Arne Duncan wanted "top end" results. The American predilection for the quick fix is ingrained in every facet of our social lives from the auto companies in Detroit to Wall Street to your local school board.

Arne Duncan was able to improve reading and math scores in Chicago while slashing services for the children most in need.

When his selection as Secretary of Education was announced pundits on the TV networks sagely confirmed the wisdom of the choice. He got the reading scores up and he managed his budget.

The only trouble? He didn't manage all our children's futures.

People have migrated to Iowa City hoping desperately that they'll get a new deal.

Normalcy and Its Effects

My friend Lennard Davis who is one of the leading scholars in the area of Disability Studies has observed that the diversity minded folks in higher education are often opposed to including disability as a form of human diversity in academic culture. Lenny explains this peculiar circumstance in his book Bending Over Backwards, a collection of essays about disability and culture. Here's a quote:

"Indeed, in multicultural curriculum discussions, disability is often struck off the list of required alterities because it is seen as degrading or watering down the integrity of identities. While most faculty would vote for a requirement that African American or Latino or Asian American novels should be read in the university, few would mandate the reading of novels about people with disabilities. A cursory glance at books on diversity and identity shows an almost total absence of disability issues. The extent to which people with disabilities are excluded from the progressive academic agenda is sobering, and the use of ableist language on the part of critics and scholars who routinely turn a "deaf ear" or find a point "lame" or a political act "crippling" is shocking to anyone who is even vaguely aware of the way language is implicated in discrimination and exclusion."

If the issue of exclusion was merely a matter of being left off the reading lists in higher education one might argue that the extraordinary number of first rate memoirs and novels with disability themes that have been published in recent years will take care of the matter in due course. Books like Nancy Mairs Waist High in the World or The Diving Bell and the Butterfly are remarkable as much for their poetry as their embodied narratives and you can easily build your own lists of associated literary texts without too much difficulty.

The odd thing is how the diversity minded folks in higher education privilege essentialism and normalcy at the same time. By essentialism I mean the symbolic construction of ethnicity or sexual orientation as a de facto co-efficient of marginalization and exploitation. One is exploited and excluded because being black or Chinese-American or Latino or gay is to be trapped in a reductionist category of representational language that is subborned by the figuration of cultural privilege. "Talking back" to a hegemonic culture is to reframe the terms of the debate but not to alter the nature of identity. In social terms this process of debate strives for equal but seperate identification.

A different way to put this is to say: "I will be equal in my rhetorical place but insistent in my nurture of exclusion." I make no claim or argument for or against this position and merely aim to point out that this dualism of identity exists both inside and outside of higher education.

Disability troubles this dualism because people with disabilities want to claim rhetorical equality in much the same way that other historically marginalized groups have done while simultaneously rejecting the social construction of normalcy–that is they reject the static idea of the body as a marker of any kind of cultural identity. The scholar Rose Marie Garland-Thompson calls those who embrace the healthy body as their primary marker of identification "normates" –a term that carries something of the futility of their position for the human body remains "normal" for merely part of a life and even this is conditional as luck and circumstance will surely dictate.

But by rejecting the static symbolism of the body as having a significant cultural meaning people with disabilities scare the other alterities half to death. If disability is a social construction and nothing more then it follows that racial or gendered identities can also be collapsed. The utopian position that differences are devoid of meaning beyond their historical claims of oppression is a protean dialectic that bothers those who need a stable form of normalcy against which to position their claims for equality and their claims for exclusion.

The irony is that people with disabilities are more progressive than many in academia when it comes to deconstructing the relationship between the physical body and the cultural nausea of embodiment yet they are shut out of the diversity dialogue at their respective colleges and universities because the culture of embodied diversity is deeply troubled by their kind of difference.

Accordingly at all too many campuses disability is remanded like a habitual scofflaw to a purely reactive position–non-academic, rehabilitative, often poorly funded and directed, inchoate and driven by the threat of lawsuits rather than by any visionary ideas. IN turn "real" people with disabilities are not only shut out of the rich diversity cultures of their respective colleges but they are provided with grudging and ineffectual support services.

This isn't the case everywhere. Noted exceptions in the United States include Syracuse University, The Ohio State University, the University of California–most notably at Berkeley, and the University of Illinois at Chicago.

I have grown to believe that difference as weighed against normalcy, whether that's whiteness or physical prowess or heterosexuality (just to name a few of the usual suspects) is a quaintly 19th century position–a "hand me down" from the age of empire and industrial nation states. I am in no way unique for saying so but I point this out because I sense that the stability of normal bodies (whether literal or figurative) is rightly more a matter of celebration than distress. Unless you're a "normate". If that's the case then you have something that's poorly designed and which you will want to protect.

S.K.

Nira and Fala

The photo below was taken by Mr. Lance Mannion, "international blogger of mystery" and it depict my guide dog Nira seated alongside a facsimile of Fala, President Roosevelt's famous dog. There is a hand, mne, entering the frame and urging Nira to look at Fala but she's more interested at this moment in Mr. Mannion who was telling her about canine ad presidential history. She's a true student Miss nira.     

 

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Browsing with Mr. Mannion

I was visiting my inlaws with my wife Connie when my dear friend Mr. Lance Mannion asked me whether I thought that F.D.R. was a voracious reader or (as a new biography suggests) not much of a reader at all. "Aha!" I said for I am always talking like one of the Hardy boys (Frank I think) "Aha! I know Jeff Urbin, the educational director at the F.D.R. Presidential library. Let us call this good man and wish him all the season's felicities and beg of him the truth in this important matter." I actually said something like that because I am Frank Hardy.

Both Lance Mannion and yours truly are among other things ardent fans of President Franklin Delano Roosevelt and accordingly the question about our favorite president's reading habits had to be answered then and there. Of course I had to take time out for a piece of mince pie and a game of "pass the pigs" with my family but the next morning I gave Jeff a call. As luck would have it Dr. Urbin was in his office at Hyde Park and he was instantly able to answer our question and even better, he invited us to visit him at the library that very day.

And so it came to pass that Lance and my guide dog Nira and yours truly found themselves at Hyde Park where Nira was thrilled to see a stuffe replica of Franklin and Eleanor's famous dog Fala standing inside the main doors of the visitor's center.

If you click on the above link to Lance Mannion's blog you will hear of the decided results of our collective investigation into the mystery of F.D.R.'s literary avocations. Hint: he owned 20,000 books, a number that will exceedthe height of the Empire State building by twice should some compulsive actually stack them but let's hope no such plan emerges anytime soon.

Lance has a great photo of Nira and Fallah and I hope that he posts it on his blog.

If you are in the vicinity of Hyde Park anytime soon I urge you to visit the fascinating exhibit they are currently showing about F.D.R.'s first hundred days in office. The shiveringly apt comparisons with our present historical moment are obvious.

If I'm Frank Hardy then I think Lance is Joe. We are chums. It was good to take a turn in our runabout and investigate the mystery of the presidential library. We owe Jeff Urbin our collective debt of gratitude and here's hoping for the advancement of a ne New Deal for our nation.

By turns I was amused t hear last niht on the Rachel Maddow Show that the GOP is calling President Bush a socialist. They of course want the Old Deal e.g. "The Gilded Age" and I think it's safe to say that they've had it for the past decade and, as muy uncle used to say: "C'mon kids, the show's over and the monkey's dead."

                  

  

            

    

Affirmations

    

If the world is a verb as Heidegger once said it may be than the world is worlding without us. This isn't news if you're a Mayan priest or a Buddhist or a Labrador retriever but it "is" news for those who are caught in the trap of getting and spending or for those who are the victims of getting and spending like the children of Rawanda. The world will die on its own but we have the power to sustain life if we so choose.

I believe that in a season of associated holidays this pledge to take care of life is all encompassing and this principle offers the only antidote to cynicism.

If you are worn out with holiday treacle here are a few quotes I favor this time of year. Happy holidays to all.

Ralph Waldo Emerson:

What lies behind us and what lies ahead of us are tiny matters compared to what lives within us.

Albert Einstein:

"

The most important human endeavor is the striving for morality in our actions. Our inner balance and even our very existence depend on it. Only morality in our actions can give beauty and dignity to life.

"

Emma Goldman:

"The ultimate end of all revolutionary social change is to establish the sanctity of human life, the dignity of man, the right of every human being to liberty and well-being.

Stephen Kuusisto's dog:

"Dignity Shmignity. If you don't have health care–and that includes food,clothing and shelter along with medicine and the right to see a doctor, then dignity is a false pretense like those porcelain frogs you see in suburban gardens."

Sammy Davis Jr.:

"There's nothing that can match Broadway for stature and dignity."

Shopping Season

"I went to the store when they opened up the door

I said "please, please, give me some more."

–Frank Zappa

I went to the store and found that people who use wheelchairs or travel with a guide dog (and hence take up some extra space) couldn't get in.

I went to the store and found that people with disabilities could "get in" but they couldn't navigate the aisles.

I went to the store and found that the security personnel wouldn't let me in with my guide dog.

I went to the store and found that they didn't have any accessibility at all for wheelchairs.

I went to the store and was treated like crap . I remembered that I shouldn't feel special cuz that's the way it goes for everybody. Right-e-o?

I went home and lay down on the couch. I slept for awhile. I dreamt that a giant jade Rhinocerous was drinking absinthe from a Roman aquaduct in my bak yard. I felt good about this.

I will now dedicate this little arpeggio to Barnes & Noble, Macy's, CVS, and almost all the stores in Iowa City, Iowa.

I especially want to dedicate this to the Barnes and Noble in New York City on sixth avenue where once I gave a literary reading which, incidentally was filmed by NBC and when I came back to shop there I was prevented from entering the store because of my guide dog.

I should have filed a formal complaint with the Department of Justice but I was young and frivolous in those days.

Incidentally the only disability friendly store in downtown Iowa City is our fabulous "indie" bookstore Prairie Lights where my dog is treated like the soulful girl she really is. And you can use your wheelchair too.

SK

Feeling Sober at Year's End

    

I am ending 2008 with what the poet Norman Dubie has called "the green sickness of middle life" as I am ever mindful that the poor and people with disabilities and the elderly are far ahead of most Americans when it comes to suffering in our collapsed economy. The predations of nursing homes, and of state run institutions, half way houses, and schools for the mentally challenged are widely reported in the nation’s news although these stories tend to get little play in the national television newscasts. Instead we hear about the Illinois Governor’s corruption scandal as if petty thievery was something new to the political life of our nation. Meanwhile off camera the poor and defenseless are being herded into the streets or worse, they’re being placed in unconscionable institutions where the employees are without education and all too often without even the rudiments of compassion. The abandonment of our nation’s most defenseless citizens began in the Reagan administration and the problems have never been resolved insofar as the ruling classes have resisted national health care.

And so I am gloomy as the year ends. I see institutions of higher education all across this country that have still failed to adopt the minimum standards of disability compliance, their administrators imagining that disability isn’t really an intellectual matter but simply a question of plumbing in some building—and certainly such administrators happily imagine that people with disabilities are not a part of the cultural conversations of a university or college curriculum or diversity plan.

I’ve seen how my friend Howard has struggled to get cable television to imagine a channel that could be devoted to the real lives of over 54 million Americans with disabilities. Howard has found broad and authentic enthusiasm from disability rights activists, writers, scholars, journalists, and the arts community but no substantive interest from people who could invest in such an enterprise. When we have cable TV channels devoted to poker playing for god’s sake I think reluctantly that the issue is disability itself. America still isn’t ready to conceive of disability as a real part of daily life. We’re still hooked on sappy television about "overcoming" a disability by climbing a mountain or the sweet forbearance of contemporary Tiny Times who remind us all of our god given good luck. Real disability is of course far different and programming about people who live and work and play while managing their disabilities A cable channel devoted to real disabilities would of course do the whole country a lot of good. But we’re not ready for real people on TV unless they’re pitted against one another in a sorority house or fighting over the broiled tarantula legs on a desert island.

I remain optimistic because President-elect Obama is going to work like hell to get something like health care up and running. I remain optimistic because people with disabilities are not going to go away and their allies are diverse and strong and poised to make a real difference in the years ahead.

Still I believe that the smug media compartmentalization of stories about people with disabilities is a very sad contemporary reality and one that contributes to the peculiarly American Puritanical tradition that somehow those in need must deserve it. I’m experiencing a great deal of schadenfreude these days as I watch the corporate classes lining up for their bailouts—the very classes of our citizenry that have argued against programs to help the most destitute.

I think as the year ends that a good rule of thumb is to ask when debating the merits of our public officials or of those who would like to become the same "What have you done for the poor?" In this paradigmatic area Caroline Kennedy beats her rivals for the New York senate seat vacated by Hilary Clinton hands down.

S.K.

    

The Real Work

        Barack Obama’s selection of a certain (here to be unnamed) right wing preacher to lead the invocation at his inauguration is receiving all kinds of praise and blame and I don’t really know if I

 

care about the issue. In general terms I don’t think preachers mean a tinker’s tutu when it comes to life in the big world. I can’t get worked up about preachers anymore. They’re on my list of facts that exceed intellectual energy along with onion farming and hemp clothing. I just don’t have the time. It does strike me that no one should be surprised that Barack Obama has no taste in preachers. But I think we already knew that.

 

The thing that matters more to me than anything else at this juncture is the failure of the

United States

to champion universal human rights. Whether you’re gay or straight; abled or disabled; or whether you hail from historically marginalized and oppressed ethnic group we must address the use of prisons as warehouses for America’s poor; the horrific and life threatening conditions in facilities for people with mental disabilities; the desperate conditions of the elderly; the plight of poor women with children; I could go on and on.

 

I always liked John Lennon’s quote: “They keep you doped on religion and sex and TV…”

 

I hope the Democrats surprise me with a push toward human rights but I’m not holding my breath.

 

Last night I was momentarily uplifted by some discussions in the Senate about holding Donald Rumsfeld responsible for the

U.S.

adoption of torture. But I came to my senses. The Democrats always flirt with these things and then they go flat as ginger ale.

 

I’m slapping myself around and getting ready for post election disappointments from the Democratic Party.

 

In the meantime, while everyone is beating up on Bill Clinton for accepting 10 million dollars from the Saudis for his presidential library foundation I’d suggest that people stop to remember that that 10 million was American money in the first place. All Bubba did was bring it back home. Personally I say “more power to him.”

 

SK

        

How Many Fingers am I Holding Up, Part Two

 

 

 

My friend William Peace has alerted me to a tasteless portrayal of New York

 

        Governor Paterson on last Saturday’s NBC comedy show Saturday Night Live. Bill’s post can be read at his blog “Bad Cripple” and I urge you to see what he has to say about the affair. Here’s the link:

 

http://badcripple.blogspot.com/

I think blindness can be funny. For instance when traveling alone I sometimes walk into the Women’s Room. This is funny for about a dozen reasons but most obviously it’s what every fifth grade boy wants to do. Women, seeing a man with a guide dog stumbling into their midst are either amused or solicitously helpful or both. I don’t make this mistake very often and when I do I try to cover it with some of my own humor: “I said find the Grille, not the Girls!” I wag my finger at the dog.

 

But the SNL skit presented Governor Paterson as being severely unable to orient himself to public space; depicted him holding a script upside down; made crude use of his inability to focus his eyes. These are the old comic gags that rude French comedy used to employ back in the late middle ages. Starved for humor the locals would round up blind men and give them oversized fake spectacles and musical instruments that they couldn’t play as well as fake sheet music they couldn’t read.

 

I wonder if the folks at Saturday Night Live find “Step and Fetchit” funny? How about some buck toothed

China

men ruining your laundry? These are the stock figures of racist and able-ist culture and no one who owns anything like an education would judge this stuff worthy of a primetime television show or even in a frat house revue.

 

The terrible after effects are what most concern me. As I’ve said over and over on this blog and in public, people with disabilities remain disproportionately unemployed in the

U.S.

and caricatures like the stumbling and lost version of Governor Paterson do considerable harm out here in the world where real lives are in the balance.

 

NBC owes the good governor of

New York

an apology and they owe me one too.

 

Not ready for Prime Time indeed.

 

SK

The 12 Days of Xmas

So there I was yesterday morning awaiting a flight in the San Antonio, Texas airport when I became aware that very loud Xmas music was being piped all over the terminal—really loud; drop your suitcase loud; bug eyed loud; enough to drive you onto the runway.

Someone told me it was in preparation for the arrival of a flight carrying disabled war vets who were coming home from Iraq and Afghanistan.

Imagine coming into a terminal on your newly crafted prosthetic legs and hearing Jingle Bells or Rockin’ reindeer. It was a sobering sense I had: we don’t know how to welcome the wounded so we aim for Burl Ives singing have a Holly Jolly Xmas.

I think were I coming off that airplane I’d feel even sadder. Call me a gloomy and unseasonable fellow if you want. But Xmas music is commodified treacle under the best of circumstances. It would be better to have a brass band. It would be better to hear “The Stars and Stripes Forever” or Sousa’s “The Thunderer” than “Frosty the Snowman” and I am not in danger of taking this back.

So I’m a sour puss. I can only tell you that the sugar plum fairy better get out of my way.

On the first day of Xmas Uncle Sammy gave to me

My discharge papers and a phat colostomy.
Etc. etc.

SK