The Disability Rag

"It’s so elegant, so intelligent" the disability rag and have I mentioned that its relentless? People who don’t have a disability tend to imagine that people with disabilities receive accommodations and then their lives go smoothly. Sometimes even those of us who are veteran disabled people allow ourselves to imagine this.

But "the disability rag" (hereafter referred to as the DR) is capricious like a boy’s unconscious. One moment you are using your fancy shmantzy talking computer and the next moment and without warning your computer has busted a transducer and not only that, but your white cane has snapped and you can’t find your cell phone. This is the DR.

In general the DR always happens when I’m having one of those ill advised moments of optimism because things are working so well. By God, my wonderful talking computer is making my work day into a form of temporal nobility. I feel almost classically adept at my negotiations. What an amazing world! I’m "working it" like those sighted people. It’s going so well.

DR.

The guide dog gets sick. The taxi doesn’t come. You miss an important meeting. The wings fall off. DR

Sometimes the unforeseen obstacle isn’t technical at all. It can be a human problem. I was once invited to appear on "The Oprah Winfrey Show" and as I was getting ready to board the plane to Chicago the airline announced that the flight was canceled. But there was no problem they assured us because they had a bus lined up to take us to an airport about 45 minutes away and they had rebooked all our tickets on a flight that would leave from there. Okay.

As I was attempting to board the bus with my guide dog, the driver, a surly fellow indeed, told me with far too much passion that I couldn’t get on the bus with the dog.

DR.

It didn’t matter that it was a guide dog. It didn’t matter that state and federal law guaranteed us the right to get on the bus. This driver couldn’t have cared less. He was unmovable.

My wife went and found a policeman. The policeman, who was around 14 years old didn’t know a thing about the Americans with Disabilities Act or the so-called "white cane laws" that guarantee access to public transportation by blind people with certified guide dogs. He sort of shrugged.

DR.

And while the driver and the cop were discussing their respective cluelessness I simply got on the bus.

(Once you’re "on the bus" they will have to forcibly remove you. I figured this would look bad in court if things ever went that far.)

The driver got on the bus. He was silent. He drove to LaGuardia airport in New York.

After about twenty five minutes he said: "I’ve got a disability."

DR.

It turned out he was a Viet Nam veteran.

He said he was sorry.

He told me about the shrapnel in his legs.

I told him that disability rights in the United States have been secured with the passage of the Americans with Disabilities Act and that the Viet Nam veterans played a major role in pushing for the legislation.

DR.

This Disability Rag contains circles within circles. And they’ll roll over you when you least expect it.

S.K.

Why Won't They Tell You?

Is it just me?  Have you sensed that a shift is occurring underneath America?


One is tempted to use the recent senseless mining disaster in Utah as a form of metaphorical realpolitik—certain assumptions about the indifference of Americans to the plight of laborers (an indifference exploited by the “trickle down economics” crowd and their descendents among the neo-cons) is coming to an end.


If the term “stewardship” has a slang sister it might be “get her done”.  Americans are tired of insufficient government and corporate profiteering and the evidence is everywhere.  Perhaps the most significant proof is that the silly “on again off again on again” presidential   candidacy of Fred Thompson aint sparking the tinder grass of  middle America.


I believe that despite the GOP’s collective veneration of Ronald Reagan that even “the great communicator” would have trouble selling his economic ideas to the current electorate.

While Republican senators and representatives look for ways to distance themselves from the war in Iraq they might also think about the very real need for investment in the nation’s social and physical infrastructure.

The candidate who is best able to articulate this vision of an optimistic American renewal of the middle classes will be the winner. The war should be a factor but I don’t currently believe this is the issue that’s moving below ground and in the collective unconscious of the body politic.


Still, someone on the stump has to be brave enough to say that the nation is tired of third class government. Not all of the New Deal was bad Mr. Reagan.


Please don’t get me started on the subject of public transportation.

SK

Protesting Pity

It’s Labor Day which to many people with disabilities has a meaning all it’s own, as was mentioned in this post.

Join Kara and friends as they "Protest Pity" and examine each other’s reactions to the annual Jerry Lewis MDA Telethon.  Kara writes:

"Welcome to the first annual Anti-Telethon Blogswarm (online gathering
of bloggers to bring attention to an important issue). By stopping by,
you’ve joined our protest against pity."

Cross-posted on [with]tv

Chautauqua Podcast: Stephen Kuusisto

If you’ve stopped by this blog before you know Steve was a guest speaker at The Chautauqua Institution recently.  You can read about his impressions of Chautauqua in this post: Chautauqua Mystique.

Better yet you can listen to his interview with host Paul Burkhart, Chautauquan and retired professor of Speech, Shippensburg University. 

Enjoy!

Connie

Sauna Talk

So I went to the local health club and had a long swim and then I went and sat in the sauna.  A woman there asked me if I "could see anything at all" and when I said "colors and shapes" then she just went on and on.  "Can you tell that I’m female?" "Do you see my shape?"

Godfrey Daniel!  I wanted this woman to shut up.  I was wrapped in my own private endorphin Eden and I didn’t need this miscreant to ask me about my blindness and for God’s Sake I thought she was going to grab my hand and put it to her face and say: "Can you tell what I look like?"

So because she wouldn’t stop talking I just got up and walked out.  It was easy.

She probably thought: "What a miracle, the blind man walking away, all by himself."

People with disabilities seldom get a break.  Some days you just feel like Hester with the scarlet "A" on your chest.

Shut up!  You!  You Out There!  Read a book about eye disease.  And do it in the privacy of your own home or apartment.  Promise yourself that you won’t spoil other people’s hard earned moments of bliss.

Of course the real problem in this sauna was that it wasn’t the authentic Finnish variety.  In Finland if there’s a jerk in the sauna you just throw more water on the stones and drive the fool away with hot steam.

This was one of those pale imitation American saunas which is just a hot little room without the all important bucket of water and ladle.

I think from now on when people do this intrusive "do you know what I look like" thing, I’m going to say, "Yeah, you look just like Sponge Bob."

SK

Emotional Appeals, Corresponding Anguish

Labor Day is upon us and this means that it is time for the annual MD “telethon” and as many already know, corresponding anguish will be felt by people with disabilities in perfect accord with the emotional appeals that are used by the telethon industry.

I don’t want to persuade people to give up on charity—especially where real cures can be found for illnesses that can alter lives.  I do wish that the fund raisers in all areas of disability related work would wean themselves of the old fashioned Victorian language which is dependent on words like “courage” and “inspiring” and “heroic” and the like.

As a person with a disability all I want today is to be a regular citizen.  I don’t want to be any more inspiring than the person next door.

Can’t we have medical advancements and good rehabilitative services without patronizing lingo?

The problem is that the treacle of “old charity” really gets folks to open their wallets.  Rational discourse doesn’t seem to “do it” and isn’t that kind of interesting?

But we can cure muscular dystrophy and champion the dignity of people who have MD.  We really can do both of these things.  Why are charitable organizations so afraid to try new and dignifying approaches?  Ah, we’re back to the wallet.

Here’s an idea: the donors can bid for a chance to be on a reality TV show in which they must survive by living with the challenges of people with disabilities.

This scenario would provide both charity and comedy.

You may say that I’m a dreamer, but I’m not the only one…

SK

Read Connie’s thoughts in her post on the [with]tv blog: Same Old, same old

MDA Telethon: Wrong Message Overshadows Original Good Intentions.

Mdabanner_8The following text comes from a blog I just discovered: Miss Crip Chick’s Weblog…thanks to a recent comment from Kara:

"Jerry Lewis is the host of the Muscular Dystrophy Association’s Annual
Telethon, a telethon that occurs every Labor Day to raise funds for
cures by using disabled people as posterchildren. Disabled people
protest the telethon because of its outdated, negative portrayal of
disabilities. These images that the telethon promotes sticks in
people’s minds and continually serve as a barrier for disabled people.
Disability is not the problem, but rather the attitudes and barriers
that society places on us."

"What can we do? Protest. Write a Letter to the Editor. Tell people
about the charity, medical, and social model of disability. Blog. Kara
and I, along with the Disability Activist Collective (website coming
soon) are organizing a campaign against the telethon and the charity
model of disability. We need bloggers (not only
disability bloggers but all! feminist, queer, woc, environmentalist,
activists, great time to build alliances) who will agree to write about
this! The campaign will work much like a blog carnival and will be
heavily publicized in listservs and other sources of media. We
encourage you to participate! To participate, please a comment or email
us a consciouslycrip@gmail.com
We will be announcing the campaign on Thursday via media and will tell
them to check the website postings on Monday. The campaign will be
posted on Kara’s site."Mdatelethon1

Visit this link for more information, including "A template letter the Disability Activist Collective wrote for you to use…"

Walking Catfish

Alright, I admit it: I talk a lot. I wake up talking. I talk like a man who has had a gallon of Turkish coffee. (Note: when you’re in Greece don’t call it "Turkish coffee").

I woke this morning and said "bean sprout and Buddha" though I don’t know why. Then I said "winged chestnuts and garland of daisies".

I do not know why I say such things. I do not have Tourette’s and I can control my impulses to sing and dance for the most part, unless I have had too much of the grape.

The troubling thing is that I tend to wake up in a state of advanced good cheer. This is very annoying to the people who must share the kitchen with me. I’m talking right away about the kings of France and about the swell shoes they used to wear at Versailles.

I am, in short, full of exquisite dung. I am a minor character in Finnegan’s Wake.

Tuesday; walnut; hardware; ballet; ars moriendi; blow fish; spoon dropped in the snow…

I wake this way.

And sometimes I wish it might be otherwise.

On the bright side: I don’t have to fawn after the news for good cheer. I am glad that Alberto Gonzalez has resigned from the Justice Department. I am glad that the New York Mets are in first place in the National League East. I’m very glad that the Chicago Cubs are making a run for the Central Division.

I’m glad that genetic research is becoming a branch of linguistics.

I’m glad that autumn is coming and that college football will be returning this weekend.

I’m grateful to live on the same planet as Bishop Tutu.

But like Paul Simon, sometimes I feel like the only living boy in New York. I can get all the news I need from the weather report. I wake up saying "cake walk; la vie en rose; big bang; photo synthesis siblings…"

"Goodbye, Alberto. Goodbye grimy soap. Goodbye propeller hat. Goodbye walking catfish."