2005 Iditarod broadens the definition of "challenge..."

from The Baltimore Sun
Saturday, March 05, 2005
An extra climb in the Iditarod
By Candus Thomson

As a youngster, Rachael Scdoris turned to her dogs for comfort when
cruel
classmates taunted her. And it will be her dogs that the 20-year-old
musher
calls on today as she lines up to compete in her first Iditarod.

Each day, before she dips into her snack bag along the 1,150-mile
trail,
she'll feed her team. Before she massages her own weary feet, she will
knead
the soreness from 64 paws.

When both they and she are digging down for that last bit of energy,
the
Iditarod rookie will raise her voice in song - gospel and spiritual
tunes
she has known forever.

There is no place she would rather be.

"Running a team of dogs is the fun part. There is an electricity
between
us," she says.

On top of the hardships each of the other 78 Iditarod mushers will
face,
Scdoris has one more challenge. She is blind.

Congenital achromatopsia, a deficiency of the photoreceptors called
cones
and rods in her retinas, affects her depth perception, light
sensitivity and
ability to determine color. From the back of her sled, she can make out
the
fuzzy forms of her lead dogs, but little else.

Bright, white conditions along a snowy route are particularly difficult
for
her. Low-hanging tree branches or open water or wild animals are
potentially
life threatening.

In other races, she has been guided by a "visual interpreter," a scout
on a
snowmobile who radioed back warnings about when to duck and turn, much
the
way blind climber Erik Weihenmayer took directions from sighted
teammates
when he reached the summit of Mount Everest.

But the Iditarod Trail Committee initially rejected her application to
compete because the idea of a gasoline machine running with the sleds
was
anathema. The committee relented in 2003, but attached a stipulation:
her
eyes would have to be a musher on a sled, not a snowmobile driver.

The ruling opened one door and closed another. Paying for an additional
musher and dog team was financially impossible, and Scdoris was forced
to
withdraw from the 2004 race.


This year, she has corporate sponsors and an experienced shadow. With
her
every step of the way will be "Precious" Paul Ellering, 51, a bear of a
man
with a huge mustache and shaved head who made his reputation as a
tough-guy
wrestler and coach in the World Wrestling Federation before he
completed the
2001 Iditarod.

Naturally, there's grumbling.

The outdoors writer for the Anchorage Daily News predicted, "Once the
race
starts, she'll be no more than a well-financed, sled-riding spectator
on the
trail."

An opinion piece in the same newspaper complained about the "hype," and
hinted that the Iditarod Trail Committee altered the rules to avoid a
discrimination lawsuit.

If she manages to complete the race and collect prize money, the writer
wondered whether Scdoris would deserve an asterisk next to her name to
signify the help she got that other mushers did not.

Scdoris says that like her dogs, she will pull her own weight.

"I worked hard to get here, but so did everyone else. There are some
things
I can't do, like fly a plane and drive," she says. "The rest is fair
game."

While Ellering can be her vision, he cannot be her muscle. Care of the
dogs
and managing the three tons of supplies dropped along the trail are
Scdoris's responsibility. The dogs will be a lifeline she must sustain.

John Balzar, who completed Alaska's other distance race, the 1,023-mile
Yukon Quest International Sled Dog Race, recalled in his book, Yukon
Alone:

"There is no choice but to hang on to the sled and give yourself over
to the
dogs. They drive themselves by instincts that are impossible for humans
to
decipher.

"Their trail sense and determination is all a person has. Without them,
these mushers would be as helpless as babies out of a crib ...

"Tired, sore, cold and scared, a musher feels sobbing spasms of
gratitude
and admiration for these small, hard-muscled animals. You have led them
here, and now they must lead you out."

To qualify for the Iditarod, Scdoris placed 11th in Montana's 350-mile
"Race
to the Sky," and sixth in the 430-mile John Beargrease Sled Dog
Marathon in
Minnesota last year.

"The Iditarod is just like those races; it's just a lot longer," she
jokes.

The record, set in 2002, is 8 days, 22 hours, 46 minutes and 2 seconds.
Scdoris believes she will need about two weeks to get from Anchorage to
Nome.

There were early signs Scdoris was going to be a musher. At age 8, she
announced her intentions to run in the Iditarod.

She soloed at 11

"I thought it was really cute and that it was wonderful that she had
such a
rich fantasy," recalls her father, Jerry Scdoris, who raises sled dogs
and
helps organize a 300-mile sled race each year near the family's home in
Bend, Ore.

Rachael Scdoris took her first solo ride at 11 and completed her first
race
the next year. As she's grown older, she's taken up rock climbing and
participated on her high school's track and field team.

The taunting by elementary school classmates only made her tougher, her
father believes.

"I just see her as a great overachiever," Jerry Scdoris says. "It's
easy for
us as parents to do it ourselves. I think that's what I've learned from
her,
to step back and be supportive.

"It's been a whole lifetime of letting go, and now I don't have any
choice."

Rachael doesn't understand what the fuss is about.

"I'm not anything special. I'm just out here running my dogs," she
says.

Others say Scdoris is a role model, especially for blind children and
adults.

"We all need somebody else to push the boundaries for us," says Barbara
Pierce, director of public education for the Baltimore-based National
Federation of the Blind.

"People like Rachael and Erik do that for us. They refuse to agree to
live
by the limitations. They give the rest of us permission to dream our
dream
and climb our own Everest."

Danger by Association

I've been thinking about the semantics of civil rights movements and how harsh the language is on young ears like mine, and not just for youngish people in the disability rights community but for those feminists, GLTB and people of color who sometimes grow a little weary of the linguistic autopsies going on all around us.

Cause of death? Unruly Prefix. Excessive Hyphenation. Misuse of the Acronym.

Take the story I posted a few days ago, "From 'Passing' to 'Coming Out.' " I love the idea that a disabled woman might come clean about her disability as a result of embarking on motherhood, but I've always found the use of the term, "coming out" a little odd for people with physical disabilities. Particularly if the disability is plainly visible, it would seem that what happens here has more to do with reconceptualizing or renaming one's body as a social rather than a medicalized self. Not that I'm opposed to clever cross- references, but it would be nice if there were some reciprocation once in awhile. As yet, only a handful of Punks and Anarchists have come anywhere close: there's that Ramones song with the chant from Freaks in the chorus, the novel Geek Love, and... and...

Of course, the truth is that many of the same prejudices that effect disabled people today once plagued (and plague) other minorities. Their bodies were and are medicalized/ violated, their communities segregated, their access to information and public space limited. Now, it's like, "We got what we wanted. You kids are on your own." But more on this later.

Enter at Your Own Risk

This article by Monty Anderson appears in the Fall - Winter 2003 issue of the Student Slate, a newsletter produced and distributed by blind students through the National Association of Blind Students:

"How ya doing bud?" he asked as he walked by, patting me on the arm. From the deep resonance of his voice, he appeared to be a big guy.


"All right," I replied and waited for his instructions.


I was sitting in a group of seven people waiting to enter the haunted house at the Waikiki Shell. My friend Tasha and I had been talking about it for days. We hadn't been to a haunted house since we were kids, and on the drive over, we were laughing and shivering like high school kids.


The man started telling the group what to expect. There would be a lot of large stairs and a lot of low places where we would have to duck. He pointed the flashlight at me, the light bouncing off my cane, and said, "Especially you." I smiled and nodded. For one thing, I'm six foot eight, so I'm used to ducking through doorways and dodging ceiling fans. For another, I'm blind. I still have some sight at the periphery of my vision, but I carry a cane and borrow an occasional shoulder when walking through unfamiliar territory...

Walking Distance

Don't worry- sooner or later I will run out of cutesy double entendres for this blog. How many can there be after all? I wonder if in future our speech will be peppered with car- and- driver allusions, causing the average American to sound like one of the guys on Car Talk.

A recurring theme throughout many of my dreams involves an impossible design feature like something taken from a Robert Heinlen (sp?) story. I'll be strolling through a house, a mall, or some other space and instead of coming to a threshold, magically, the walls will shift to make way for a new wing or hallway. Never do I pass under an Exit sign. Nothing is recycled. I rarely double- back. I can only move forward through an exquisitely detailed maze, which might sound overwhelming or surreal at best, but just as often I recall a sense of exhilieration. It's the urban pioneer in me, though I had these dreams growing up in a very small rural community. I walked and rode the same short distances every day of those first eighteen years, and I knew the paths intimately, down to the potholes and lazy transitions from tar to gravel and then dirt. You could plot the growth of the neighborhoods by the attendant layers of earth laid upon them. Logging roads were the most sinister, as they indicated either a new development was in the works or that the shady tree cutters had been in need of some fast cash.

Alabama weather being what it was, I did far more exploring back then. I moved into this apartment in April of last year and only took time to walk the north- and eastern corridors of my new neighborhood before a bitter winter set in. I was elated this week to learn that on top of tons of great Mexican cuisine, my zip code boasts a second Little Italy directly south of here. Insulated from the single digits by the promise of a more diverse diet, my friend and I struck out on Wednesday night to find the place recommended to us, La Fortunelli's on Oakley. The still, cold air, our journey felt just like one of my old familiar dreams with one neighborhood opening directly on to another, except that in this one there was a bottle of Extra Virgin olive oil waiting for me.

From 'Passing' to 'Coming Out"

Another selection from the Ragged Edge Magazine. Here, Candace M. Lee describes her decision to proudly "out" herself as a person with a disability at the time of her first pregnancy. Way to go Candace!!!

I confess: I've been passing.

I'm a 32-year-old woman, disabled since birth, and until recently I have been firmly in the closet.

I have been living in the non-disabled world all my life. I was part of early attempts at "mainstreaming" children with disabilities into regular classrooms (I received special services at recess). Once I passed adolescence, my health stabilized to the point that ongoing medical care is not required, other than regular check-up visits with various specialists. I completed college, then graduate school. I am a full time professional. I have been married eight years to a non-disabled person.

In most of the situations I encounter, I am the only person present with a disability. All the key disability rights issues -- work, housing, medical care -- have left me unscathed, because of my fortunate ability to work full time, to put a roof over my own head, to purchase health insurance.

And yet, here are these braces. This limp. This ostomy appliance. These stares in the supermarket. All remind me that, while I live among the non-disabled, I remain on the margins. I remain Other...

From the Ragged Edge, an article by Steven Kuusisto

Click on the above link for the complete essay. I'm opting for the title "Life without Mozart," on this one. A poetic examination of some of the more humbling aspects of carlessness:

NOW AND THEN, WALKING the shoulder of a road, moving slowly with a cane, I feel like Robert Louis Stevenson's "Blind Pew" -- I'm the blind man who talks to himself as he makes his way to the supermarket, a two-mile round trip jaunt. I wear a backpack and I think of a cartoon I once saw entitled "Life Without Mozart" -- it showed a patch of desolate landscape, a desert, where only a cactus grew, and beside it lay a flat tire and a rusted can.


I'm walking the edge of a road where everywhere in the tall grass are the tokens of "life without Mozart" -- the McDonald's trash and the shattered beer bottles. I'm walking here -- that is, in a place not fit for recreation. This is walking in earnest and I'm thinking of Nanao Sakaki, a Japanese poet who as a boy was the radar operator on the day they dropped the bomb on Nagasaki. A survivor, he has spent his life walking across North America from one nuclear installation to another, writing poems, many of which are ecstatic. He describes how to eat from the ditch along the road. He pan fries grasshoppers, which he soaks in tamari: they taste like garlic. The thoughts of the non-driver. . .

Blind Couple Denied Day Care License

All rights reserved.
http://www.thedenverchannel.com/news/4159677/detail.html
There's even an on- line poll that allows you to vote on the debate. Last time I checked, 26% of voters believe that the couple should be allowed to open a day care, 62% feel they should not, and 12% aren't sure.

A Grand Junction, Colo. couple is at the center of a developing controversy over disabilities
that could become a national issue.
Tom and Christine Hutchinson wanted to open a day-care operation in
their home, so they took CPR and first-aid courses required by the state
of Colorado.
They also submitted to background and medical checks and provided
references. Their home was inspected and the submitted to in-home interviews
about their
backgrounds, college degrees, and child and family studies.
The state spent six months going through their qualifications before
denying their license because of their disability.

some dis-quieting news & what to do about it

This was sent to me by way of the National Federation of the Blind's Director of Governmental Affairs

Immediate Action Needed To Save Vocational
Rehabilitation

Fellow Federationists,

H.R. 27, the bill to reauthorize the Workforce Investment Act comes
before
the House Committee on Education and the Workforce on February 16.
Indications are that this legislation will include a provision allowing
governors to seek permission to consolidate several employment and
training
programs including the Vocational Rehabilitation program. Every one of
us
must express opposition to this provision because its passage likely
means
the end of separate and identifiable services for the blind in those
states
that choose this option.

We all know there are significant costs necessary for good training
prior to
employment. We all know the rehabilitation program including funding
and
services must remain separate from other programs in order to preserve
accountability for the spending of those funds. The blind are a low
incidence disability and would suffer in the fierce competition for
services
and funds expected under consolidation.

So what shall we do? Each of you with members from your state on the
House
Committee on Education and the Workforce must call your Washington
office
and urge your representatives to exclude the Vocational Rehabilitation
program from any consolidation plan. At this time, I do not have an
amendment sponsor, but I continue to aggressively pursue leads to find
a
Republican committee member who will introduce an amendment. Let me
know
immediately if you have a lead for me. An announcement will be
promptly
posted when someone is found.

This provision is among the most serious threats ever faced by the
Vocational Rehabilitation program. While many of us have our share of
bad
rehabilitation experiences, we are much better off with the program we
have
than the one that would result if this provision becomes law. We have
much
educating to do. Please spread the word widely seeking calls from all
who
can do so. This threat to rehabilitation services is real and it
demands
our very best efforts if we hope to prevail. I trust that we will.
Below
you will find a list of members of the House Education and the
Workforce
Committee with phone number included. For states without members,
contact
either the office of John Boehner or the office of Buck McKeon to show
your
concern about this provision.

James McCarthy
Director of Governmental Affairs
NATIONAL FEDERATION OF THE BLIND
1800 Johnson Street
Baltimore, Maryland 21230
(410) 659-9314, ext. 2240
jmccarthy@nfb.org

COMMITTEE MEMBERS: House Committee on Education and
the
Workforce

MEMBER
PHONE FAX
Rep. John A. Boehner (R-OH) (Chair) 202-225-6205
202-225-0704
Rep. Thomas E. Petri (R-WI) (Vice Chair) 202-225-2476
202-225-2356
Rep. George Miller (D-CA) (Ranking Minority Member) 202-225-2095
202-225-5609
Rep. Howard P. McKeon (R-CA) 202-225-1956
202-226-0683
Rep. Michael N. Castle
(R-DE) 202-225-4165 202-225-2291
Rep. Sam Johnson
(R-TX) 202-225-4201
202-225-1485
Rep. Charlie Norwood
(R-GA) 202-225-4101 202-225-0279
Rep. Vernon J. Ehlers (R-MI) 202-225-3831
202-225-5144
Rep. Judy Biggert
(R-IL) 202-225-3515 202-225-9420
Rep. Todd Platts
(R-PA) 202-225-5836
202-226-1000
Rep. Pat Tiberi
(R-OH) 202-225-5355
202-226-4527
Rep. Richard Anthony Keller (R-FL) 202-225-2176
202-225-0999
Rep. Tom Osborne
(R-NE) 202-225-6435
202-226-1385
Rep. Joe Wilson
(R-SC) 202-225-2452
202-225-2455
Rep. Jon Porter
(R-NV) 202-225-3252
202-225-2185
Rep. John Kline
(R-MN) 202-225-2271
202-225-2595
Rep. Marilyn Musgrave (R-CO) 202-225-4676
202-225-5870
Rep. Bob Inglis
(R-SC) 202-225-6030
202-225-1177
Rep. Cathy McMorris
(R-WA) 202-225-2006 202-225-3392
Rep. Kenny Marchant
(R-TX) 202-225-6605 202-225-0074
Rep. Tom Price
(R-GA) 202-225-4501
202-225-4656
Luis Fortuno
(R-PR) 202-225-2615
202-225-2154
Rep. Bobby Jindal
(R-LA) 202-225-3015 202-225-3015
Rep. Charles Boustany (R-LA) 202-225-2031
202-225-5724
Rep. Virginia Foxx
(R-NC) 202-225-2071 202-225-2995
Rep. Thelma Drake
(R-VA) 202-225-4215 202-225-4218
Rep. John (Randy) Kuhl
(R-NY) 202-225-3161 202-226-6599
Rep. Mark Edward Souder
(R-IN) 202-225-4436 202-225-3479
Rep. Dale E. Kildee
(D-MI) 202-225-3611 202-225-6393
Rep. Major R. Owens
(D-NY) 202-225-6231 202-226-0112
Rep. Donald M. Payne (D-NJ) 202-225-3436
202-225-4160
Rep. Robert E. Andrews
(D-NJ) 202-225-6501 202-225-6583
Rep. Bobby C. Scott
(D-VA) 202-225-8351 202-225-8354
Rep. Lynn C. Woolsey (D-CA) 202-225-5161
202-225-5163
Rep. Ruben Hinojosa
(D-TX) 202-225-2531 202-225-5688
Rep. Carolyn McCarthy (D-NY) 202-225-5516
202-225-5758
Rep. John Tierney
(D-MA) 202-225-8020 202-225-5915
Rep. Ron Kind
(D-WI) 202-225-5506
202-225-5739
Rep. Dennis J. Kucinich
(D-OH) 202-225-5871 202-225-5745
Rep. Rush Holt
(D-NJ) 202-225-5801
202-225-6025
Rep. David Wu
(D-OR) 202-225-0855
202-225-9497
Rep. Susan Davis
(D-CA) 202-225-2040
202-225-2948
Rep. Betty McCollum
(D-MN) 202-225-6631 202-225-1968
Rep. Danny Davis
(D-IL) 202-225-5006
202-225-5641
Rep. Raul Grijalva
(D-AZ) 202-225-2435 202-225-1541
Rep. Chris Van Hollen (D-MD) 202-225-5341
202-225-0375
Rep. Timothy J. Ryan (D-OH) 202-225-5261
202-225-3719
Rep. Timothy Bishop
(D-NY) 202-225-3826 202-225-3143
Rep. John Barrow
(D-GA) 202-225-2823
202-225-3377