Category: Uncategorized

 

(ABC News)
February 6, 2013

INDIANAPOLIS, INDIANA– [Excerpt provided by Inclusion Daily Express] An Indiana couple is looking for answers from their daughter’s former elementary school after the 8-year-old came home from her special-needs program with her shoes duct-taped to her feet and ankles.

Nate and Elizabeth Searcy’s daughter, Shaylyn, who has Down syndrome, was in her first year at the Life Skills Program at Westlake Elementary in Indianapolis. But after what the parents saw when she returned from school Tuesday, they have re-enrolled her in Bridgeport Elementary, the school she attended last year.

“Shaylyn got home and the assistant on the bus said, ‘Where’s mama?’ I looked down at my daughter, and she said, ‘My feet hurt,'” Nate Searcy told ABCNews.com. “I noticed she had duct tape around her shoes, over and under the tops of her shoes, and up and around her ankles to keep them on.”

Shaylyn had to be wheeled to the bus because she couldn’t walk, Elizabeth Searcy said the assistant principal told her. Her dad carried her from the bus when she got home.

Entire article:
Parents ‘Stunned’ to See Disabled Daughter’s Feet Duct-Taped After School
http://tinyurl.com/ide0206134

There’s a poem by the great Swedish poet Tomas Transtromer entitled “Below Freezing” which begins: “We are at a party that doesn’t love us.” Almost all socialized people know the feeling–the disconnect between a formal occasion and the brutal realities of the subconscious. As a person with a disability I experience it all the time. I’m at the party on sufferance, provisional, accepted only in a guarded way. 

 

Years ago, (around twenty years ago, now that I think of it) I went to a faculty party at the small college where I was an adjunct professor. I entered only to realize that I was being surveyed, appraised, categorized, and dismissed by dozens of near strangers. “We are at a party that doesn’t love us” zinged into my mind. Because the first seconds of a cocktail party require the ability to make eye contact I’m an abject social failure.  My eyes wander, jump, drift, hop like birds. It’s next to impossible to mingle and enter the little circles of casual conversation. 

 

Transtromer’s poem is more interesting though, for he plumbs the depths of analytical psychiatry with astonishing clarity:

 

“Finally the party lets the mask fall and shows what it is: a shunting station for freight cars. In the fog cold giants stand on their tracks. A scribble of chalk on the car doors.”

 

In short, just beneath the veneer of the party stands the machinery of the holocaust. I submit if you’re a wheelchair user, a blind man, or a member of the LGTB community–just to name a few dis-normative body types–you will “get” Transtromer’s associative image immediately. Beneath the party is a history of cultural sanctions against people who “cripple” the normal. Then Transtromer says:

 

“One can’t say it aloud but there is a lot of repressed violence here.” 

 

I’ve been thinking of this poem quite a lot lately. The poem ends this way:

 

“I work the next morning in a different town. I drive there in a hum through the dawning hour that resembles a dark blue cylinder. Orion hangs over the frost. Children stand in a silent clump, waiting for the school bus, the children no one prays for. The light grows as gradually as our hair.”

 

Transtromer’s poems speak elegantly and cleanly about the social lying that is often committed in our names and that we easily shrug off because we want so desperately to belong at the party. 

 

 

 

By Andrea Scarpino

 

Some losses never leave you. Some losses never should. 

 

The nurse walked around me, hands constantly moving. She was talking about the Super Bowl, how her daughter’s boyfriend made ribs, how she felt like she spent the whole day eating. Then she touched my foot, my “clean water” tattoo. She didn’t ask what it means, just let her fingers linger on the words. 

 

Then she turned to me, began talking about her brother, how since his death she’s gained 6o pounds, how since his death she doesn’t feel the same. I didn’t tell her my tattoo is in memory of my father. She just touched it, turned, began to speak about her own loss. 

 

I told her German has a word for weight gained while grieving: kummerspeck. Literally, “grief bacon.” She smiled, said “That sounds about right.” 

 

I didn’t tell her that I think every day about my father, about the friends I have lost in the last several years. That I think every day about death, what it means to our living. What it means to leave and to leave behind. What it means to the project of being human, of being a writer. 

 

One of my students is Puerto Rican and explained to me once that in the culture of her youth, there was no separation between the living and the dead: “They’re just always here,” she said, “The dead are just always with us.” In her writing, characters who may be dead and may be alive eat and breathe and sleep together, speak to one another. Relationships don’t end just because one person dies. New relationships are forged just because one person dies. 

 

And while there is sadness there, sadness in the weight of the dead who never leave us, I think there is something else, too. I’m not sure what to call it.  Comfort, maybe? Connection? Relief? 

 

In that moment of the nurse touching my tattoo then speaking about her brother, a connection was forged. We understood one another. She told me about her brother and I carry him with me now. Because we come to one another in our loss. With our losses. We hold them up for one another to see, to share. And in so doing, we keep our dead alive. 

 

 

 

When you’re blind Vermeer is a mystery. His paintings are like the idea of magic or reflections in a department store window. Your friends, the sighted ones, talk of lace, a spark of sun on a girl’s lip. Their voices are like yellow flowers. It is always summer when they describe Vermeer. The words rise like balloons at the edge of a field.

My friend Bill Peace (“Bad Cripple”) takes up the issue of school sports programs which are now required to make modifications for students with disabilities following a ruling by the U.S. Department of Education’s Office of Civil Rights. 

Bill is a trenchant analyst of the odd, and often uncomfortable dynamics that accompany the issue of inclusion. He writes:

At a practical level, I cannot foresee schools being willing to spend money on adaptive sports equipment. For instance, many schools in Vermont have ski teams. Will a school be required to purchase a mono ski for students with disabilities that express a strong desire to join the ski team? A mono ski rig costs many thousands of dollars. Will a school be willing to rent a mono ski for the season? Will school districts pay to have its athletic teachers be trained in adaptive sports? The resounding answer to these questions is no. When my son attended public school I was stunned at the degree of hostility I encountered. Any request I made in terms of wheelchair access was met with a firm and not so polite no. Reasonable accommodations at the university level are equally problematic.

I too have wondered how this will be implemented since the ruling was issued. Like Bill and thousands of other people with disabilities I know first hand how little “inclusion” there really is in public schools and post-secondary institutions. People with disabilities are all too often included in classrooms or educational activities merely on sufferance. And sufferance is the polite word.

One may say it takes a constellation of nails to build a house. It takes a constellation of laws and active will to build accessibility. The former we have, the latter is still all too often in short supply.  

Technorati Tags: Bill Peace, Bad Cripple, Disability and Sports, Department of Education

There’s a blog post over at The Bark’s website by JoAnna Lou entitled “Revisiting Fake Service Dogs” which is a follow up to an earlier post by the same author. Ms. Lou’s issue is with non-disabled people passing off their dogs as service animals, largely to bring them aboard airplanes. Service dogs fly in the cabin and can’t be put in cargo. As a guide dog handler who has flown hundreds of thousands of miles over the past 18 years, I want to weigh in on some of the contentions in Ms. Lou’s posts.

One of her assertions is that dog show people routinely cheat by passing off their pets as service dogs while traveling to dog related competitions. I have no doubt that people do this. As Ms. Lou correctly points out, the Americans with Disabilities Act does not require people with disabilities to provide documentation for service animals when accessing public places. By way of analogy ask yourself what it would be like if, as a non-disabled individual, you had to produce your Passport every time you went into a grocery store or movie theater or restaurant, or wanted to board a bus. Clearly you’d find yourself without the documentation because you changed your handbag, left your briefcase on the desk, or forgot the Passport in the pocket of your other coat. The ADA is a Civil Rights law and not a “hall pass” to the bathroom in Junior High. 

I am getting ahead of myself. But the Civil Rights aspect of service dog travel is important. I was recently in Japan where I visited the Kansai Guide Dog training school. I learned there are not equivalent access guarantees for guide dog handlers in Japan. What this means is that blind people with professionally trained guide dogs can only travel to places that will admit them on sufferance. This is precisely what the ADA’s documentation clause is designed to avoid. Your disability doesn’t have to be “proved” if its invisible; you don’t need to show them a letter from your eye doctor proclaiming your vision loss; you don’t need to tell the professor how you got PTSD; you don’t need to show your service dog’s official license to get in the door. 

Not long ago I was denied access to a tony restaurant in New York City. The doorman and the night manager wanted me to “prove” that the yellow Labrador beside me, wearing a leather harness that says “Guiding Eyes” across the back strap, was really a service dog. We had a frank conversation and I told them they were violating the law. Later the owners apologized. They offered me a free dinner but I won’t go back. I did have an ID card from Guiding Eyes for the Blind in my wallet. But the doorman is not permitted to demand this and frankly he shouldn’t be permitted to demand this. Civll Rights are “rights” and they are not conditional on having the proper paper work. 

Ms. Lou believes that legions of people are cheating the system by pretending their tricked out pets are service dogs. But if you watch enough courtroom dramas on TV you will likely notice her evidence is what they call “heresay” on “Law & Order”–which means she’s getting her information second hand. Back in 2009 she wrote:

“The legitimacy and training of service dogs has come up a lot recently, and many of the cases do not have clear solutions. But what about when someone is consciously taking advantage of the privileges granted to service dogs?

With the USDAA Cynosport World Games coming up in Scottsdale, Ariz., I’ve been talking to many of the local competitors about how they’re traveling with their dogs. Some are caravanning in their RVs and others are reluctantly putting their pups in cargo. 

One of the more seasoned competitors mentioned that while she dutifully puts her dogs in cargo, she always sees fellow competitors passing their pups off as service dogs on the plane.”

I have no doubt that Ms. Lou’s source did in fact see dog show competitors bringing dogs on an airplane by asserting they were service dogs. But what I DO doubt, is the rhetorical device whereby a general truism is asserted based on limited evidence. Usually that limited evidence is framed as a leading question–one that’s designed to trigger strong emotions. One of the best ways to do this is by asserting that someone is cheating the rest of us honest folk. The device is almost always a fallacy. Ronald Reagan’s famous stump speech about “welfare queens” was entirely made up.   

Let’s slow down. Let’s breathe. 

Are non-disabled people passing themselves off as having disabilities. Yes. Just drive to your local pharmacy and try to find a handicapped parking space. Then hang around and watch the exceptionally fit college kid come out and hop in the car that’s hogging the reserved spot. This makes your blood boil. Mine too. One of my best friends is a wheelchair user. He struggles with this issue all the time. In general terms people like to cheat. They will use disability status as a means to an end just as they’ll pretend to be working for a charity or raising money for a youth group. As all veteran cheaters know, the best gambit involves stealing from kind people. Back in the very early days of American film making one of the most popular plots involved “fake” beggars who pretended to be blind. Those early movies were little morality plays and the villain always received his due. We know of course that even today there are beggars faking disabilities. What I mean to suggest is that this idea of falsifying disability is one that is both venerable and loaded with pathos–the Greek term for ungoverned emotion. Pathos will always cloud better judgment. Or as the great Israeli poet Yehuda Amichai once wrote: “People who live in houses in fog believe the whole world is covered in fog.” 

Once you imagine the world is filled with cheaters you will see cheaters everywhere. Still, emotions aside, is it possible that Ms. Lou’s “source” who saw people bringing dogs on a plane was actually seeing dog show competitors who had invisible disabilities? This is indeed possible. Ms. Lou’s source cannot know by default that the people she saw were cheaters. And perhaps they were. But its also possible some of them weren’t. In the arena of human rights I like to side with individual and collective dignity. I don’t  want people to be required to prove their disabilities just because there’s a lurking scofflaw around the corner. Let me be more specific: I fly at least twice a month. I am not seeing large numbers of dogs on planes. In fact, 99% of the time I’m the only one with a service dog on the flight.  The sheer numbers of flight attendants who tell me they’ve never seen a guide dog before is rather telling. In truth there are only about 10,000 active guide dog teams in the United States. Guide dog teams are a very very small minority group. 

While there are no requirements that a person with a disability must produce doggy documentation there is a subtext in the ADA which states rather clearly that a service dog can be denied access to a public space if its not under firm control. One needs to think about that. If a cheater did get on an airplane with a fake service dog, he or she could still be denied a seat if the dog wasn’t really a working dog. What I’m getting at here is that fakery or not, there are controls. Perhaps they are not perfect. A person pretending to have PTSD and pretending to have a trained service dog could indeed get on an airplane. But they wouldn’t stay long if the dog had no manners. And I for one wouldn’t want to humiliate a person who actually “has” PTSD. While I respect Ms. Lou’s umbrage that dog show people may be faking that they have disabilities I’m not at all convinced this is a real epidemic. Moreover, I believe that suspicions tendered toward people with invisible disabilities do a lot more harm than the occasional dog show cheater. I think perspective is crucial in all areas of public life. 

I also think that the Bark’s decision to use a photograph of a legitimate service dog alongside Ms. Lou’s latest post is unfortunate. 

I like “The Bark” and I have written for them on occasion. Still, when writing about disability and public access I expect more than pathos. Much more. 

 

 

 

 

 

 

 

 

 

I will make a joy of it:

coffee late afternoon

a few poems by a friend

unwearied the coo and choke of doves.

 

Light glitters 

from the winter branches.

I will make a joy of it, 

carrying the birds of others.