A Great Summer Evening

Last night Connie and I had the opportunity to attend the opening ceremonies of the Ohio Special Olympics as guests of speaker and songwriter Eric Gnezda who wrote the Special Olympics anthem "Everybody Wins".  The event is being hosted this weekend at the Jesse Owens Track and Field Stadium on the campus of The Ohio State University.

Now, truthfully, (ever Moi?) I don’t particularly like the term "special" whether it’s used for education, sports, or an advertising pitch for laundry detergent, and I long for the day when people who happen to be disabled are allowed their natural differences without sentimentality.  We need to go deeper with our descriptions of disabled people.  I can’t imagine an Ohio State football player doing what some of the Special Olympics athletes can do.  I mean, imagine that football player being asked to wear restraints and bags of bird shot around his ankles while running.  There has to be a better word than "special"?  How about "extra stamina" just for starters?

But I digress.

If you need to be reminded why America is a great country think about this:

We sat last night in a stadium named for an African-American athlete (and a "Buckeye") who showed up Hitler at the ’36 Olympics.  And the Olympic flame was carried across Ohio by relay teams of police officers and those same officers brought the torch into the ceremonies with a full motorcycle and helicopter escort. Those officers then handed the flame to the disabled athletes who in turn lit the cauldron.

Now that’s America.

Whenever you are weighed down by the daily news and your optimism index is drained, just remember that in the USA our police forces celebrate the physically challenged because they are truly our neighbors and friends.

I know we have lots of problems.

But as Senator Clinton might say, "when we think like a village, everybody wins."

I got all choked up last night.

Take that Hitler!

Thank you Eric for bringing us along.

Even my guide dog Vidal got a little choked up.  Perhaps in his case this had to do with the fact that I wouldn’t let him eat popcorn under the stadium seats?

S.K.

P.S.  Brian has posted a couple of great photos at Columbuser.com

Picnic with the Pops and Celebrate the ADA!

The following message was forwarded to us and we’d like to share it with you as written:

As quickly as possible–please share the attached flyer and announcement below with your widest distribution list. We look forward to seeing a crowd of disability advocates at this celebration!

Columbus Advisory Committee on Disability Issues invites you to celebrate the Americans with Disabilities Act 17th Anniversary at the Columbus Symphony Picnic with the Pops

Kick off your Fourth of July celebration with an evening
of star-spangled favorites and brilliant fireworks!

Saturday, June 30, 2007, 8:15 PM
On the lawn of Chemical Abstracts
2540 Olentangy River Rd., Columbus

Join in a special recognition of the ADA. Visit displays.
Enjoy the red, white and blue musical salute with friends and family.

General admission lawn tickets: $20 advance. $22 at the gate.
Discount lawn tickets: $18 at Giant Eagle stores, Fifth Third banks and
Wild Oats on Lane Ave.

Bring blankets or chairs for lawn seating. Onsite parking is free. Concert venue is fully accessible, including reserved seating area and handicapped parking area.

Gates open at 6 PM. Guests may bring food and beverages, or purchase food from concessionaires.

For more information, or to purchase tickets online visit
http://www.picnicwiththepops.com

Metro Madness: Riding the Metro through a Service Dog's Perspective

Speaking of guide dogs, I was looking around the web site for Leader Dogs for the Blind, a dog guide training school in Rochester, Michigan when I stumbled on the following:

"Metro Madness: Riding the Metro through a Service Dog’s Perspective,"
is an entertaining video educating Metro riders about proper etiquette
toward service dogs.  The video gives a glimpse, from a leader dog’s
perspective of the difficulties of riding Metrorail, followed by some
simple solutions for improving the ride for the dog.

The 3:27 minute film was developed and produced by Barbara Thomas, a
visually impaired intern who works at the Department of Veterans
Affairs Broadcast Center."

Barbara did a nice job with this I thought.  I was a a bit amused however by the *voice* of this female German Shepherd.  She sounded a bit like Minnie Mouse.  A German Shepherd aught to sound more like Kathleen Turner, or Vanessa Redgrave, minus the British accent of course.  Wouldn’t you agree?

Link to video here…

~ Connie

Hillary and I: Same Place. Different Time

What do Hillary and I have in common?  A few things actually.  Perhaps more than either of us knows.  But I do know this for sure: we’ve both patronized the Mt. Kisco Coach Diner in Mt. Kisco, NY where Hillary filmed this video announcing her campaign song as voted by we, (OK you) the American people.  I used to walk by this diner regularly as I trained guide dogs (and students on how to use them). 

Small world isn’t it? 

Thanks for the memories Hillary!

~ Connie

Petition for AMA Disability Advisory Committee

Are you from the Chicago area?  If so, what are you doing this weekend?  The following announcement is borrowed from a post found on F.R.I.D.A. (Feminist Response In
Disability Activism):

This weekend, the American Medical Association is in town at the
Chicago Hilton! Hundreds of doctors are meeting to conduct AMA
business.  Let’s go tell them why they need to hear from people with
disabilities!

It’s People with Disabilities Power Time!
Join FRIDA, ADAPT and Not Dead Yet in our AMA Rally!

Where: Chicago Hilton, 720 N. Michigan (meet us at the corner of Michigan and Balbo)
When: Sunday, June 24, 2007
Time: 11:30 am to 3:30 pm

What
We Want: We want to ask the AMA to form a Disability Advisory Committee
(DAC). We need to educate AMA members and the public about why we need
a DAC and ask them to partner with us to set one up.

For those of us who can’t attend this rally, we still have a voice.  We can sign this Petition for AMA Disability Advisory Committee

Description/History:
Presently,
the perspective of people with disabilities is not formally represented
in the structure of the AMA. This petition calls for the AMA to
demonstrate its commitment to the full inclusion of people with
disabilities in the ongoing work of the AMA by creating a Disability
Advisory Committee.

As the largest organization of medical doctors in the country, one of
the AMA’s primary purposes is to promote better public health for all,
including people with disabilities. In order to achieve this goal, it
is critical that the AMA regularly communicate with people with
disabilties about matters that specifically affect them.

Several recent medical cases underscore the necessity for creating a
formalized forum dedicated to a dialogue between the AMA organization
and staff and people with disabilities, not least the recent
controversial case involving the "growth attenuation" treatment that
was given to the young girl known to us as Ashley, which involved
procedures that violated state law.

This petition is part of an ongoing effort by advocates to seek AMA
engagement on the creation of a Disability Advisory Committee as
quickly as possible.         

Steve and I have signed it.  You can too.  Help us spread the word, won’t you?

Thanks,

Connie

 

Anne McDonald. Don't Call Her a Pillow Angel

Meet Anne McDonald, a writer and activist for people with disabilities.  As a recent guest columnist for the Seattle
Post-Intelligencer: June 15, 2007, in an article titled  The other story from a ‘Pillow Angel’ Been there. Done that. Preferred to grow she wrote this astonishing statement:

"At the time of the initial publicity about growth attenuation, Ashley’s parents wrote on their blog: ‘In our opinion only parents of special needs children are in a position to fully relate to this topic. Unless you are living the experience, you are speculating and you have no clue what it is like to be the bedridden child or their caregivers.’

I did live the experience. I lived it not as a parent or caregiver but as a bed-ridden growth-attenuated child. My life story is the reverse of Ashley’s."

Read Anne McDonald’s stunning article in its entirety but before you do, are you sitting down?  I sure would like to know what Ashley’s parents and doctors have to say in response to Anne’s very strong voice.  (This article can also be found here, in case the Seattle Post version is archived.)

~ Connie

Other Links:

Growth Attenuation: Say It Ain’t So
The Ashley Treatment: Is It Just Me?
Two Must Reads on the "Ashley Treatment"

of Comedy and Disability

When I was 17 a friend’s mother asked me if I had any heroes.  I named Groucho Marx.  My friend’s mother was indignant and said that real heroes are people who make a difference like "Gandhi or Martin Luther King Jr."   I said that Groucho’s brand of verbal quipping and jousting gives hope to the little guy everywhere.  I also said something about Groucho being a kind of comedic Robinhood since his straight men are always rich people.

Even in high school while undergoing a substantial bout of depression, I knew that comedy was a potent tool and that humor has a lot to do with self preservation.  Groucho was a rule breaker; an impostor as a college president; a farcical ruler of the mythic country of Freedonia; a stowaway; a fraudulent hotel manager in Florida; a phony impressario of the stage; on and on–he was the guy who was faking it in his every occupation and managing it by talking faster than everybody else.  He was the perfect hero for a teenager with a disability.  He remains firmly atop my private version of Mt. Rushmore along with Sojourner Truth, Bob Marley, and Phil Ochs.

It wouldn’t be long after my adolescent infatuation with Groucho that I discovered the associated joy of contemporary poetry.  I found the insouciance and subversiveness of the Marx Brothers in the works of Kenneth Rexroth, James Tate, Muriel Rukeyser, Charles Simic, and many others.   Poetry as practiced after two modern world wars was a medium where the self and its hidden components–the smaller selves we eschew for the appearance of public competence, can be seen and celebrated.  We are all like T.S. Eliot’s J. Alfred Prufrock who is frightened to eat a peach for fear that others will laugh at us. Modernity regulates human sensitivities until we are frozen in the speculative conception of what must be appropriate action.  After the triumph of what Eisenhower called "the military-industrial complex" we all live in perpetual alienation: we are all "sub-normal" and robbed of what the English department types like to call "agency".  You see, the problem is that after two world wars and with a third one never ending, no one knows how to be normal.  Consider these lines by Marvin Bell:

The Self and the Mulberry

I wanted to see the self, so I looked at the mulberry.
It had no trouble accepting its limits,
yet defining and redefining a small area
so that any shape was possible, any movement.
It stayed put, but was part of all the air.
I wanted to learn to be there and not there
like the continually changing, slightly moving
mulberry, wild cherry and particularly the willow.
Like the willow, I tried to weep without tears.
Like the cherry tree, I tried to be sturdy and productive.
Like the mulberry, I tried to keep moving.
I couldn’t cry right, couldn’t stay or go.
I kept losing parts of myself like a soft maple.
I fell ill like the elm. That was the end
of looking in nature to find a natural self.
Let nature think itself not manly enough!
Let nature wonder at the mystery of laughter.
Let nature hypothesize man’s indifference to it.
Let nature take a turn at saying what love is!

If you are at all like me you will laugh out loud with relief while reading this poem.  Maybe after you’ve known the poem for a couple of decades you will smile.  Perhaps the smile will be hidden by your leaves.  I for one just "crack up" over the line: "I kept losing parts of myself like a soft maple."  People who have disabilities know a good deal about emulating normalcy and the corresponding hopelessness of the enterprise.  PWDs are the jaywalkers, the ones who get stuck in elevators, we hold up traffic, our accommodations trouble the public’s nerves.  We can’t stay or go.  We can’t cry right.  And this very insupportable condition is the stuff both of comedy and of poetry.  People with disabilities are the part of nature that ruins the desperate wish for normalcy.  In fact our very stories turn normalcy into the silly search for a natural self.

So with this round of the disability blog carnival we are highlighting those stories that remind us of the improbable and impossible wit that goes with being merely para-normal.

Steve Kuusisto

If you have, or know someone who has a post to share for the next Disability Blog Carnival, the link is below.  The theme we’ve chosen is "Laughter, The Best Medicine" however, all contributions are welcome and appreciated.

A Date With My Father

Last Tuesday my father and I went out on a date.  I wish I could do this more often with him but he’s in New York and we’re in Ohio – for the moment.  I thought it was fun to pull a boat up dockside, climb out and go have lunch (a favorite thing to do in Wolfboro, NH) but pulling up to Rick’s Runway Cafe (in Orange County, NY) in a plane was way cooler!Ricks_runway_cafe 

This is a photo of Rick’s Runway Cafe from my seat in the plane.  I’m looking out from underneath the wing as we’re pulling up.  What a beautiful day it was.  The restaurant was a small ranch style building.  Nothing fancy but it’s clean, neat and the food was fine.

Captain_bill

Here’s a photo of Captain Bill at the controls.  Out the left front window is the Hudson River below.

In_case_of_emergency_2

 

Pre-flight instruction included a "cheat sheet" that said "in case of emergency try to move the pilot out of the way."  (Yeh right!   We had about as much room as we would have sitting side by side in a refridgerator.)  Instructions told you what frequency to switch to to call in the emergency.  Meanwhile do this to maintain altitude and do that to maintain direction…keep an eye on these gauges…oh, and DON’T PANIC! (Photo is that of the control panel with all it’s gauges, buttons and knobs.)

Dscn2022_2

 
Our flight is over and next we had to gas up.  (In this photo, my father, dressed in blue jeans and a white polo shirt, is standing in the doorway of the building – shack – looking out at me)

Just_in_time Back on the tarmac, Dad tied the plane down just in time.  The heavens opened up and it poured and thundered for the next 45 minutes.  He was stuck sitting in the plane and I had made it to the Honda.  (photo: orange and white Cessna…you can see my father climbing out after the rain finally stopped.)

Thanks for a wonderful day Dad.  Oh, and HAPPY FATHER’S DAY!

Love always,

Connie
(Pxx to you Dad!)

P.S.  Mom, wish you would have joined us!  🙂