Author: stevekuusisto

Poet, Essayist, Blogger, Journalist, Memoirist, Disability Rights Advocate, Public Speaker, Professor, Syracuse University

Thank you Laura Hershey of BeyondChron: San Francisco's Alternative Online Daily News

And thank you to Kay Olson of The Gimp Parade for pointing us to this article:

The Dilemma for Disabled Authors, by Laura Hershey‚ Jul. 26‚ 2007 at BeyondChron: San Francisco’s Alternative Online Daily News.  Here is an excerpt:

"Three recent books by disabled authors take entirely fresh approaches to the subject of disability, presenting it as a phenomenon both intensely personal and culturally significant.  Elegy for a Disease: A Personal and Cultural History of Polio by Anne Finger, Eavesdropping: A Life by Ear by Stephen Kuusisto, and Blind Rage: Letters to Helen Keller by Georgina Kleege all follow their own logic; they do not exist in order to answer the same old questions.

They pose new questions — about history and violence and voice, about sound and sensuality, about education and self-determination. None of these books offer tragedy, platitudes, or easy inspiration. They all tell honest, compelling stories without skirting either individual hardship or social injustice. All three deserve to be widely read for the depth of their exploration, and for the beauty of their language."

http://rcm.amazon.com/e/cm?t=wwwstephenkuu-20&o=1&p=40&l=ur1&category=books&banner=1QX5S3SEEFM6BE9P4VG2&f=ifr

The Fastest Man on No Legs

My friend Kenny Fries, author of The History of My Shoes, among other wonderful books, has recently published an op-ed piece in The Washington Post.  The editorial, entitled "Running Outside the Lines" is about Oscar Pistorius, the sprinter from South Africa who runs on two prosthetic legs.  He refers to himself as "the fastest man on no legs" and as you may already know, he has successfully petitioned the Czars of the running world to compete alongside able-bodied runners.  Whether Oscar Pistorius will be allowed to continue competing against "the normates" remains to be seen and the debate over the pros and cons of engaging in sports with the aid of prosthetics is raging.  Kenny Fries brings his unique perspective to this story: he is a disabled walker and a student of the history of physical difference.  Ultimately the issues involved are more philosophical than utilitarian: baseball players use ever bigger gloves, but in the early days they wore no gloves at all.  The Boston Celtics wear sneakers that grow larger and more technologically advanced with every season.  In the end, one has to ask, what’s a prosthesis?  Who in the world of sports wants to be normal?  No one wants to be normal.  Athletes get paid to be post-normative, or supra-normal.  Many of them will cheat and use illegal steroids to achieve a competitive and super-natural edge over their competitors.  As technology changes so does the nature of human sport.  Heck, even the sports change.  No one ever thought about snowboarding when I was a kid.  Now its an Olympic event.

I believe that competitive sports will be more interesting when we abandon the cult of the perfect body and imagine new paradigms of competition.  If the able-bodied runners believe that Oscar Pistorius has an unfair advantage with his high tech prosthetic legs, then they could wear stiff splints and learn to run the way he does.  Why not?  Personally, I know some darned good blind golfers.  Maybe everyone on the PGA should wear occluders that limit eyesight.  I think this would make golf much more interesting.

SK

More….

Kenny Fries on Oscar Pistorius at Disability Studies, Temple U

Oscar Pistorius – Lucky Or Unlucky? at The King SPEAKS

Oscar Pistorius – Science and Engineering vs Training.  The first and only evaluation of ALL the evidence at The Science of Sport

Oscar Pistorius: Able or Disabled? at Run Bulldog Run

What Do Wresting and Autism Have in Common You Ask?

14-year old Alex "Big Al" Moshenko, of course! 

Article: Taking Autism to the Airwaves, Maryalice Demler,
Anchor/Reporter

What also makes his show, Al’s Wrestling Talk, unique is that while Alex talks about
wrestling superstars, he also talks about how he’s spent most of his
young life wrestling autism. And he hopes to inspire others to overcome
their limitations.

"That’s what I want, to help a lot of other kids
who have autism, too.  Because I found my talent, I’m sticking to it,
and I’m not going to stop," says Alex.

Alex celebrated his 14th birthday not too long ago.  I meant to post a Happy Birthday wish to him but somehow missed the opportunity.  But it’s never too late to post a "Happy Belated Birthday" now is it?

Happy Belated Birthday Alex!

One Caveman Defending Another

Who DO they think they’re fooling? 

"The Patriarch" called?

I know exactly who called in a feeble attempt to defend my Caveman of a husband and if you stop to think
about it, you do too.  I’m not naming names, but trust me, if you read this blog, you do.

I’m crushed. 

There is no Defending the Caveman in this instance.  My clumsy Caveman knows his "slip" was anything but "iddy biddy".  It was an "Uh-Oh" moment and he knows it! 

So now I’m dealing with two cavemen.  Thank goodness they are miles apart at the moment (thank goodness we’re ALL miles apart!) otherwise they’d be pounding their chests, hoisting their spears, giving each other the old "high five" with one hand while crushing beer cans with the other in some macho display of perceived dominance.

Clearly this "Patriarch" doesn’t recall our conversation a few years ago in which he called me a saint.  When I asked why he said, and I quote, "my wife wouldn’t let me leave for a week at a time, let alone two months!" Caveman_2

Oh how quickly these mighty hunters band together the moment they sense danger lurking in the form of
"women beating up" on them on their blogs.

~ Connie

(Image above is that of a caveman, a cartoon character sitting on the ground in front of his laptop.  He’s scratching his head with his right hand, as if to say "Duh" while poking at the keyboard with one finger of his left hand.)

An Actual Phone Call, Unsolicited

The phone rang just the other day and I was surprised.  No one ever calls the lake house.  I figured it was someone looking for a donation to the Patrolmen’s Benevolence Fund which got me to thinking about that phrase, I mean, I know the PBF is supposed to assist the widows and children of wounded or dead policemen, but the title also suggests that if you give to the fund the police will be benevolent to you, and of course you get a little sticker you can put on your windshield and this implies that the police are perfectly aware of the general drift of symbolic language, which in turn got me to wondering if someone far back in time was reading the philosophical work of Ernst Cassirer at the police station, and I was in danger then of not making it to the phone in time to answer it.

The voice that came out of the phone was absolutely stunning.  It was deep, masculine, the kind of voice one associates with the great Russian "basso profundo" Chaliapin.  It was antediluvian.  It was the voice of Moses.  Maybe this was the Policemen’s Benevolence Fund?

"Stephen Kuusisto?"

Yes?"  I said.  "If this isn’t Chaliapin it must be Charlton Heston,"  I thought.

"Stephen Kuusisto.  This is The Patriarchy!"

"Wow!  Really?   You mean like the big "Patriarchy?"  I said.

"Yes, Stephen.   We are the line of great men who go back through the ages.   We’re calling to tell you that we stand behind you, one hundred per cent!"

"Wow!" I said.   You have to understand that I didn’t know who this was on the line–and what else do you say to the unsolicited benevolence of the Patriarchy?   I was a little bit scared.

"Yes, Stephen.   We of the Patriarchy have observed that women are beating up on you on your blog.   We Men don’t think you did anything wrong when you said in your post that you "have the privilege" of going to your lake house to write without anyone but your dog for company.   These women seem to think that men should spend all their time extolling the extraordinary joys of marriage.   But mark our words: when men hang around and extol the joys of marriage, women go nuts.   And furthermore, Stephen, these women are being disingenuous.   Every one of them would be delirious with joy if they could get away from their husbands and go alone to the lake house."

Mr. Patriarchy had to hang up just then because he said he had to skip down to the local seven-eleven for some marshmallow Fluff.

I’m not really sure who that was on the other end of the line.   But he sure sounded authoritative.

I knew I should have gotten an unlisted number…

Oh, and lest you wonder about the veracity of this post, I really did receive this call.   I swear with my right hand on "The Book of Common Prayer" and all I can add is that I can’t help it if the Patriarchy has a phone book…

Disability Carnival #19: Sex and Disability

Pregnant_womanI am borrowing this graphic from the last carnival by Retired Waif who, by the way, hasn’t been heard from in a few days.  Perhaps she’s celebrating the birth of her baby?!  Let’s hope so!  The wait can be so endless.  My first child was 17 days late in coming which gave her time to "bulk up" to a hefty 9lbs. 7 oz.  But I digress…

This photo is of a statue of a naked woman sitting with her right leg
outstretched.  She has no arms, appears to have only one leg, a
deformed foot, and she’s (I’m assuming) very pregnant.  I would love to know more about this statue.  Where is it?  Who is it?  What "story" is it representing?  Anyone know?

What better way to introduce the newest edition to the Disability Blog Carnival by Zephyr at Arthritic Young Thing.  Her theme: "Let’s Talk  About Sex, Babee"  and according to Zephyr, "boy, did you bloggers ever talk about sex!"

*Blush*

Just kidding.  This is anything but "a Carnival ‘O Smut" as she put it.  Zephyr has worked hard to pull together a carnival discussing a genuinely important topic and laced with posts by smart, thoughtful bloggers, many of whom we do know and some we’re looking forward to *meeting* and getting to know.

I must say, generally speaking, Arthritic Young Thing is an uninhibited young thing.  More power to her!  She has strong convictions and a strong voice and I admire that.  I could say that reading many of Zephyr’s other posts on her blog makes me feel old and stodgy but I’m reminded of the famous Eleanor Roosevelt quote: "No one can make you feel inferior with out your consent."  So instead I’ll simply say "I’m stodgy and proud of it"! 

I am not old, however.

~ Connie

Act NOW to Restore ADA Rights

The following message was forwarded to us by Scott Lissner, ADA Coordinator, The Ohio State University.  Here it is in its entirety:

—–Original Message—–
From: Bazelon Center for Mental Health Law Sent: Monday, July 23, 2007 4:09 PM
To: Grossman, Paul
Subject: Urgent Action Alert: Sponsors Needed for the ADA Restoration Act

Support Needed Now to Restore ADA Rights

July 23, 2007–This Thursday, July 26, on the 17th anniversary of enactment of the Americans with Disabilities Act, House Majority Leader Steny Hoyer (D-MD) and Congressman James Sensenbrenner (R-WI) will introduce the ADA Restoration Act of 2007.

Court decisions have seriously eroded the rights of people with disabilities under the ADA, creating a Catch-22 that allows employers to say a person is "too disabled" to do the job but "not disabled enough" to be protected by the law.

People with conditions like mental illness, epilepsy, diabetes, HIV, cancer and hearing loss who manage their disabilities with medication, prosthetics, hearing aids, etc. – or "mitigating measures" – are viewed as "too functional" to have a disability and are denied the ADA’s protection from employment discrimination.

People who are turned down for a job or fired because an employer mistakenly believes they cannot perform the job – or because the employer does not want "people like that" in the workplace – are also denied the ADA’s protection from employment discrimination.

This Is Wrong!

Congress should correct this to ensure that the courts will interpret the ADA fairly, and as Congress intended.   Many voices are needed now to help Congressmen Hoyer and Sensenbrenner gather as many original co-sponsors as possible to show strength and support for this effort.

Please Act Now!

Call your Representative immediately at 202-224-3121 and ask him or her to become an original co-sponsor of the ADA Restoration Act of 2007. (You can also get a direct phone number at http://www.congress.org.) Ask your Representative (or the staff member you speak to) to contact Representative Hoyer’s (ext. 5-3130) or Sensenbrenner’s (ext. 5-5101) office today to sign on as an original co-sponsor.

Forward this Action Alert to your network to get as many people as possible people to call their House member immediately with the same message.

What if you miss Thursday’s deadline? Not to worry! Co-sponsors will still be needed after July 27th, so do call your Representative’s office.

Here are talking points on the ADA Restoration Act and, below, a sample telephone message for seeking original cosponsors:

"Hi. My name is_______ and I live in ________. I would like Representative______ to be an original cosponsor of the ADA Restoration Act of 2007. A Dear Colleague letter was just sent to you on Friday, July 20 from Representatives Hoyer and Sensenbrenner to let you know that they will be introducing the ADA Restoration Act this Thursday, July 26, the 17th anniversary of the original enactment of the ADA.
"People with disabilities are still too often treated unfairly in the workplace. When they go to court with a claim of discrimination, they are treated unfairly again, often by a court that says they do not even have disability and are not eligible for coverage under the Americans with Disabilities Act – even when they have been fired or refused employment because of their disability! The ADA needs to cover the people the U.S. Congress originally intended it to cover when it was passed in 1990, people with mental illnesses, epilepsy, diabetes, multiple sclerosis, intellectual and developmental disabilities or cancer. But that is not what is happening now. 

"Please solve this problem by becoming an original cosponsor of the ADA Restoration Act of 2007."

* * *
If you find our Action Alerts and Reporters useful, please consider making a contribution in support of the Bazelon Center’s advocacy for people with mental disabilities. You can donate safely online at http://www.bazelon.org/support.

The Grinch Who Stole Democracy

Early this morning I was treated to the happy sounds of a family as they taught the art of water skiing to their youngish children. Oh how happy they were! The kiddies squealed and chirped; daddy-o barked his good natured encouragement; mommy-o offered sensible suggestions regarding matters of posture–the moment was Jeffersonian in its mimesis. The pursuit of happiness was right there before me.

I know I should champion this very principle: attendant and collective happiness is the "stuff" of democracy.

But I felt like the Grinch of democracy. I shut the windows and doors of the cabin and went about my business with a sneer.

How is it that I can be offended by the joys of others? If I lie to myself, this is simply a matter of intellectual inconvenience–you know, the artist interrupted at his desk by the happiness of neighborly tots. Oh but when I try that explanation on for size I remember that Einstein used to work on his calculations while his children played all around him. No honest desk jockey can use the distant cries of the neighbors as grist for the mill of melancholy.

Okay, I thought, what about this: I had an unhappy childhood. I have difficulty hearing the casual joys of others.

Nah. This won’t work. Surely if this kind of cheap reaction formation was the crux of the biscuit, then it would follow logically that I also take pleasure in the unhappiness of others. "Aw, too bad little Johnny got his water-ski stuck and fell sidelong into that water buoy and therefore has to wear that intricate nay, even Rococo body cast for months."

No, I don’t get any pleasure from the pain of others. I know that W.C.Fields said that the pain of others was an essential element of comedy. But he was W.C. Fields and the man died friendless and yes, his kids hated him.

Maybe I’m the Grinch of Democracy because while I must favor the happiness of others I don’t want to know about it. This gets closer to the truth.

This is why democracy is such a challenge.

This is why the rich don’t have to think about democracy very much.

This is why the poor and the middle classes must reaffirm and reeducate themselves about the history and nature of American representative government.

Not long ago I was asked to speak at a city council meeting in Worthington, Ohio. Some local blind folks were asking the town to put some talking street signs at a handful of busy street crossings.

The city of Worthington voted to put in the talking street signs but the debate leading up to the decision was really interesting. One citizen showed up and talked at great length about how a talking street sign would keep his children awake.

When it was explained that the sign would be discreet and that it wouldn’t really affect his household, this fellow began whining about the cost to the general public of putting in such a street sign.

I didn’t argue with the fellow. My role in the affair was to simply outline how the signs could be purchased and to help the city council remember that under the ADA the request for safe street crossings was in fact a "reasonable accommodation" and everyone agreed.

I didn’t have time on that particular evening to provide an informal civics lesson to this angry citizen who felt that helping the blind was both a personal and a pecuniary inconvenience.

But this morning I remembered that moment standing before the Worthington city council. The happiness of others is critical to our collective success.

It doesn’t really matter why I’m an occasional grinch.

What matters is that in a democracy the grinch can put it all in perspective.

S.K.

Ambassador David

David, from Growing Up With a Disability, has put up an amazing post chronicaling his trip to Costa Rica as an ambassador for Mobility
International’s 2007 US/Costa Rica: Youth Leadership and Cross-Cultural
Perspectives on Disability Rights Exchange Program.

His post is a wonderfully organized slide show actually.  The photos are beautiful and the "show" is enhanced with David’s comments and reflections, and music – it’s a "must see" really if you ask me. 

Come to think of it, I think this is must see [with]tv material!  David, I hope you don’t mind if I pass this along to Howard Renensland and Hal Rosengarten.  I have a feeling they’ll be equally impressed.

~ Connie