Month: May 2010

This morning on Good Morning America, Rand Paul opined that the “flap” over his views concerning the role of government in protecting the civil rights of Americans has been a product of the 24 hour news cycle and that he’s not opposed to civil rights, thank you very much, end of story. He also whined “Where was my honeymoon?” –apparently believing that having been nominated to run for national office, he should be free from having to answer questions about his beliefs. What Dr. Paul should be learning in this instance is that there is no honeymoon for civil rights. People who hail from historically marginalized groups understand all too well that every day, every hour, they must continue to fight for their inclusion in America’s public square. In my own case I recall how, in 1998 I had a triumphant “book launch” event at the flagship Barnes & Noble store in New York City. The event was filmed by NBC’s “Dateline” which was doing a story on the book. What a heady moment this was for me. Like most writers I’d worked in seclusion, sometimes without a job, often insecure about my efforts. Now I was standing before TV cameras and a large audience in New York.

I wonder Dr. Paul if you can imagine what it then felt like for me when I returned to that same book store only 8 months later. I returned in the company of a friend who is also blind and who, like me, travels with a guide dog. We were detained by security as we attempted to enter the store and were told we had to leave. Dogs weren’t allowed. We asked to see the manager who arrived after some delay and who grudgingly admitted us to the store but only after we made it clear that the right to travel with a guide dog is protected by both federal and state laws and that this right pertains to private businesses as well as the subway system. The store’s manager was mean spirited and he offered us no apology. He simply walked away.

I wonder Dr. Paul if you can imagine what it felt like to be so thoroughly humiliated in a store. People watched as we conversed politely with the security guard and the manager, but they were looking for drama, as if the proscenium arch of the sixth avenue Barnes & Noble was just another diversion. Dr. Paul have you ever had your rights questioned in public? Where was MY honeymoon? The Americans with Disabilities Act was passed in 1990 and I can assure you that every day, every single day, there is someone with a disability (a war veteran, a child with autism, a person blind from birth who travels with a dog) who must file a grievance with the Equal Employment Opportunity Commission or the Department of Justice because he or she has been told to go away.

There is no honeymoon for civil rights. The fight for equality and dignity cannot yet be consigned to a quaint museum where laws are unnecessary.

In your world view Dr. Paul, I surely have the right to go to another book store, one that’s more enlightened as it were. In your world view the book seller should also have the “a priori” right to sell books or to not sell books depending on the nature of the customer.

Imagine what it would feel like to travel all day and not know which door will admit you. Can you imagine that, Dr. Paul?

S.K.

A handful of kooks with religious and political beliefs that were worse than retrograde in the 18th Century and would have appalled the Founders they claim to revere are about to sabotage the educations of a generation of Texas schoolchildren and possibly the educations of children in many other states that buy these Texas approved Right Wing manifestos. Lance Mannion

The Texas School Board story is in the news and those who care about intellectual balance, fairness, and yes, about scholarship should be forewarned: the right wingers in the Lone Star state are about to decimate the teaching of accurate American history in the service of ideology.  As Lance Mannion points out, letting right wing ideologues teach history without knowledge is no different than letting them practice medicine without a degree or build bridges without an engineering license.

God created America; God wants you to watch Fox TV; God never reads Mark Twain…

S.K.

By now millions in these United States have seen Rand Paul’s interview on The Rachel Maddow Show in which the self-professed “Tea Party” candidate for a senate seat from Kentucky performed a revisionist’s assessment of both the Civil Rights Act of 1964 and the Americans With Disabilities Act of 1990. The Right Wing in America hates legislation that tells private business owners what to do. Those of us in the disabilities advocacy community know all too well of this backlash to civil rights legislation. We recommend Mary Johnson’s book Make Them Go Away to anyone who wants to know where Rand Paul’s willful double talk about civil rights laws comes from.

My own suspicion of the Tea Party movement is that their supporters are less concerned about national deficits than with the embrace of equality and human rights that the Obama administration has tried to facilitate with health care reform. Rand Paul has opened the door for serious scrutiny of the TP’s membership. Disdain for civil rights under the guise of a “business first” mantra of local governance doesn’t sound much different than the speeches of Lester Maddox. It’s hard to imagine that Rand Paul made his way through medical school given his cavalier treatment of history. When Dr. Paul opined on The Maddow Show that the ADA unfairly forces private businesses to install elevators he was spouting nonsense. But it was an assertion that tells us more about his lack of preparation to be a legislator than anything else.

Back when Ronald Reagan was in the White House and he showed an unusual incapacity to endorse facts I said to some friends that we should demand that anyone who hopes to serve in national office should have to pass the same civil service test that postal workers must take. Rand Paul would not pass that test.

As for the rest of the GOP and the other Tea Party fabulists, it will be interesting to see what their positions are in the coming weeks both on human rights and the associated laws designed to protect equality in our country.

S.K.

That’s what’s happening in New Jersey where governor Chris Christie’s new budget calls for the elimination of the state’s regional “talking books” program for blind and physically handicapped citizens. One wonders what’s next for the good governor? Maybe they can “unplug Grandma” while they’re at it. I shall have more to say about this disgraceful matter in the coming weeks but suffice it to say that if Governor Christie wants to be remembered by history as the man who stole books from blind people then he’s certainly well on the way to ignominy. Shame on the governor and on all who advise his office.

S.K.    

If Chelsea Handler can do it so can I. Look at me! I’m full of myself! Heck, I’m so full of myself I worry half the night about the tens upon tens of thousands of working age people in the United States who have disabilities and cannot find work. I’m so full of myself! I’m wearing a new suit and waving a book aloft–one that I’ve pulled at random from a shelf. Oh Jesus! The book is Les Fleurs de Mal. Look! Its Charlie Baudelaire Bang Bang! He seems to be saying that bourgeois conformity and comfort are antithetical to living fully. Bang Bang! Baudelaire didn’t have a job. He gave up and wrote beautiful, tempestuous, carnal verse. Maybe that’s what all those unemployed people with disabilities should do! Bang Bang! Write carnal verse!

Dear employer, here’s the deal:

Your bathroom won’t admit my wheels.

I think you are a rotten jerk

To prohibit me from getting work.

How’s that?

Oh I’ve got a zillion of them.

S.K.   

I don’t always write about blindness or disabilities on this blog. Heck, once I even wrote a short piece about the birthday of the bikini–which also happens to be the birthday of former Prez George W. Bush. I argued that the bikini was aging better than “W”–an opinion that resulted in a firm rebuke from a right wing newspaper publisher in New Hampshire, but I digress. (In that post I also argued that people with disabilities might not be aging as well as the Prez, what with cuts in social programs, but there I go again–obviously I can’t get away from disability themes for long.)

But this isn’t about disability at all. It’s about the perfervid and nutty soap opera that American sports fans have been subjected to over the past 48 hours. The LeBron James “will-he-or-won’t-he-stay-in-Cleveland-story” got mixed up with the real game known as professional basketball. Why you’d have never known that Mr. James and his team (the Cleveland Cavaliers) were actually playing the 17 time world champion Boston Celtics who are arguably one of the best professional sports franchises in all of pro sports. The way the LeBron story was pitched–whether the medium was TV or newspapers or the digital feeds–was that LeBron James was a strangely ailing medieval king, a man bewitched by dark forces, evil wizards from the underworld. Moreover, the story of the NBA playoff series between the Boston Celtics and the Cavaliers was discussed in the media as if the real sport of basketball was immaterial.   

Now I’m just a visually impaired university professor in Iowa, you betcha. But I grew up in New England in the 60’s and I listened to the Celtics on radio during the golden years of Bill Russell and Red Auerbach. I’ve been a Celtics fan ever since. (I still dream of Johnny Most on the radio.) Okay, so my bona fides to talk about the NBA are no better than the average Joe’s and I’ll stake no claim to being a candidate for the sports punditocracy. Yet I knew all along that the Celtics would beat the Cavs. I understood this because I actually pay attention to the NBA. I understood that the Celtics’ Rajon Rondo was a point guard who had finally come of age and by turns would give the already deep Boston starting lineup extra assurance and breadth. And realistically no one could say that Cleveland had breadth. And this was borne out in a series that underscored that the Celtics still have the hearts of a championship team.

But you’d never have guessed that Boston was really “in the house” given the nonsense that emanated from all corners of the media this past week.

The LeBron James and the Cavaliers story was as unreal as the monastery of St. Catherine in the Sinai desert. Wait. Check that. The monastery is real.

S.K.

If you’re a person with any kind of disability you’re always aware of two different worlds: there’s the one for people who are physically normal and one for folks who need to negotiate in alternative ways. And of course saying this is like announcing there’s a crow in the poplar: the observation is so customary it scarcely calls for reflection. But sometimes, even if you’ve had a disability for years, the inequality of worldly environments comes over you, you see that 20 years after the passage of the ADA your local university still doesn’t have accessible restrooms in its major academic buildings. Or you see how in the digital era software and hardware devices for blind and visually impaired people are lousy compared to the “out of the box” technologies that everyone else can buy at their local cell phone store. And the whole thing sticks in your throat. A world of true access and equality still seems far off.

The idea of full inclusion for people who have disabilities still feels like a fitful illumination. The notion is conjectural. We can imagine it all we want.

However one way to think of imagination is to say that it is “want” raised to a power. Imagination is not passive. The man or woman who possesses imagination doesn’t wait to be rescued. Imagination is the answer to a question that hasn’t been properly asked.

“When will you get there?” becomes, through imagination, “How will you feel when you get there?” Imagination is the anodyne to despair since it doesn’t admit of the passive conditions of subdued citizenship. Another way to look at this is to say: “When the world is finally equal will you still have your soul?”

Most days I find myself engaged in nearly unintelligible quarrels. But the last question is the true one. It takes some strength to stay hopeful, but hope has its own rewards.

S.K.  

I remember the hate mail like it was just yesterday. Like hundreds, perhaps thousands of other bloggers in the dis-a-sphere we at POTB protested the treatment of “Ashley” the “Pillow Angel” in no uncertain terms. (See “Growth Attenuation: Say it Ain’t So”) Today’s post at Inclusion Daily Express revisiting the findings of the Washington Protection and Advocacy System, findings which underscore precisely what disability rights advocates were saying all along, is a stark reminder of how steep the way can still be for people with disabilities.

S.K.     

“Ashley Treatment” Was Illegal, Watchdog Group Says
By Dave Reynolds, Inclusion Daily Express
May 9, 2007
SEATTLE, WASHINGTON–The civil rights of a 6-year-old girl with an intellectual disability were violated when doctors failed to get a court order before performing a hysterectomy on her as part of the “Ashley Treatment”, a disability rights watchdog group announced Tuesday.

In its 38-page report, the Washington Protection and Advocacy System concluded that an ethics committee at Children’s Hospital and Regional Medical Center in Seattle followed bad advice from the attorney representing the parents of “Ashley X”. That attorney said a court did not need to weigh in on the sterilization procedure because the surgery was not intended to keep her from getting pregnant, but was a byproduct of a set of treatments — along with massive doses of estrogen and surgical removal of her breast buds — designed to keep the girl physically small and avoid puberty.

Under federal and Washington state law, a child or adult with a developmental disability cannot be surgically sterilized at the parents’ request until a court has approved the procedure and after the child’s interests have been ‘zealously’ represented by an uninvolved third party, usually a court-appointed guardian ad litem.

By side-stepping a court’s review, Ashley’s 14th Amendment rights to due process were violated, WPAS concluded, along with state sterilization laws. Other anti-discrimination laws might also have been violated because the treatment would not even have been requested if Ashley did not have a disability. WPAS attorneys reasoned that the hormone treatments and mastectomy might have required a court review because they were very intrusive and could not have been reversed.

News of the “growth attenuation” treatment, which was performed on Ashley in 2004, was made public last October in the journal Archives of Pediatrics and Adolescent Medicine. It did not receive much attention until Ashley’s parents published their own website on January 2 of this year, to defend the treatment and to promote the procedure for parents of other “Pillow Children” — those with severe disabilities.

Many disability groups and individual advocates issued public statements expressing outrage, disgust and fear over the treatment, the medical ethics board’s refusal to stop the treatment, and the public’s general acceptance of the idea of that altering the size of a child with disabilities would be good for the child, the family, and society at large. Some called for federal and state investigations to determine whether the treatment was ethical and legal. The WPAS investigation started as a result of complaints from disability rights advocates.

The WPAS report focused on the legal aspects of the Ashley Treatment, but noted that a further ethical debate needs to take place over the rights of people with disabilities, along with more emphasis on supports for people with disabilities, their parents and families.

Curt Decker, executive director of the National Disability Rights Network, of which WPAS is a member, said: “We believe this is not acceptable treatment for a child with disabilities, despite the rationalization of the family,”

While WPAS blamed a series of “systemic” failures, the hospital called it a “communication breakdown”.

In response to the report, Children’s Hospital admitted that the surgery was performed illegally, and agreed to a number of steps to make sure that a child’s due process rights will be respected in the future, including placing a disability rights advocate on its ethics committee.

Douglas Diekema, the Seattle pediatrician that brought Ashley’s case to the ethics committee, told reporters that what is legal may not be the same as what is ethical.

Ashley’s parents defended the treatment performed on their daughter, and added that requiring families in their situation to go through a court review would place “an onerous burden on already over-burdened families of children with medical conditions as serious as Ashley’s.”

Related:
“Investigative Report Regarding the ‘Ashley Treatment'” (Washington Protection and Advocacy)
http://www.inclusiondaily.com/news/07/red/0509a.htm
“Statement from Children’s Hospital Medical Director, Dr. David Fisher” (Children’s Hospital and Regional Medical Center)
http://www.inclusiondaily.com/news/07/red/0509b.htm
The Ashley Treatment Weblog
http://ashleytreatment.spaces.live.com/
A Disability Community’s Response to Ashley’s Treatment
http://www.katrinadisability.info/ashley.html
A Statement of Solidarity for the Dignity of People With Disabilities: A Reaction to the “Ashley Treatment”
http://pub6.bravenet.com/guestbook/501900445
“Disability Advocates Respond To “Ashley Treatment” Designed To Keep Girl Small” (Inclusion Daily Express Archives)
http://www.inclusiondaily.com/news/families/ashleyx.htm

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It is hard to make fun of Easter unless you are temperamentally challenged–by this I mean true Easter, the resurrection of Jesus Christ. Forget the Roman and Greek and Egyptian antecedents to the holiday; forget the happy Gnostics with their spring plantings. Let’s be honest, if you plan on coming back from the dead spring is a good time to do it. Jesus knew perfectly well what he was doing.

But let’s say that the commercialization of Easter with its chocolate bunnies is absurd to you–that it was always absurd–that even as a child you saw there was bunk about this. You “knew” though you still ate the candy. So anyway, about a month ago I was in St. Louis where I gave a reading at Merrimec Community College and I had a splendid time talking with students about writing. My host for this occasion was hospitable enough to put me up at her lovely home where her house mate who is a sculptor had artfully arranged the following display on the kitchen table. For those of you who are visually impaired let me simply say that the photograph below shows a stuffed toy rabbit (quite fuzzy) with very long ears. The rabbit has been nailed to a cross by way of its ears–that is, the ears are spread out along the transverse arms of the cross. The Easter Bunny will of course rise again. We will go to the tomb and find an enormous egg where the stone had been. Everything makes sense. Let us proclaim the mysteries of faith!

S.K.

“When you talk with Americans about Americans you’re forced to admit their shit doesn’t stink.”

(Anonymous Helsinki drunk, in Cosmos, circa 1980)

“By what right do we despise the admission of our nation’s mistakes?”

(My own father, circa 1980)

S.K.