[il-talk] With articles such as this, it's no wonder people fear and dred blindness.
Connie Davis
connie.davis at rcn.com
Tue Jul 31 23:25:46 UTC 2012
Jenny,
I don't think what you said is offensive at all.
Connie
---- Original message ----
Date: Tue, 31 Jul 2012 17:24:54 -0500
From: Jenny Keller <jlperdue3 at gmail.com>
Subject: Re: [il-talk] With articles such as this,
it's no wonder people fear and dred blindness.
To: NFB of Illinois Mailing List
<il-talk at nfbnet.org>
>OK, >>I usually don't post much on this list. but
have something to say now, and please pardon me if
it comes across offensive, cause that's not what
it's meant to do.>>My husband is a type one
diabetic. As a child, he tried to manage it as
best that could be done in the 70's and early
80's. >>When his parent's insurance ran out, so
did his ability to afford testing supplies and
sometimes, insulin. He always tried to have
insulin on hand, but he just couldn't afford all
that was required for him to test his sugar. >>He
worked and made too much for Medicaid to help him,
so he was on his own. He worked jobs that paid
minimum wage and when you're trying to afford the
staples of life, a roof over your head, food,
electricity, etc, insulin was all that he could
afford to control his brittle diabetes. >>In the
90's his kidneys could not hold out and eventually
his eyes went too. Because of rejection of a
kidney and pancreas transplant, he went back on
dialysis for four years and got another kidney,
which thank GOD is still going strong.>>The
attitude that people with diabetes can always
prevent blindness or complications such as kidney
failure and the like is offensive to me. >>I know
many diabetics that because of lack of insurance
and the types of jobs that don't provide it, and
lack of money, prevented them from taking care of
their needs. >>the insinuation or even the
judgement that it is their fault that they didn't
take care of their situation so that's why they
went blind is something that unless we are in
their shoes we have no right to make. >>I have
watched a dear friend die because of rejection of
a transplant and now I am married to a man who
would walk through fire for me, and I know, for an
absolute fact, that had he been able to afford
testing supplies to control his diabetes, he
would've. >>You have no idea what it is like to
watch this kind and gentle man stab his fingers
over and over and over again to get just enough
blood to get a test result, and to watch him
perform household tasks with those same fingers
that ache from those constant pricks from a needle
to at times, never get the opportunity to even
test because blood won't come due to cal-laces
from doing it all his life.>>Until you live the
life of these people, and walk in their shoes, you
have no right to judge whether they could've
prevented their blindness, or kidney failure.>>I'm
sorry if this sounds offensive to you and if it
does, there's nothing I can do about it. But I
live it every day with him, and know that he
didn't neglect his diabetes, and he sure didn't
ask for all the crap that he's gone through
because of it.>>Walk a mile in someone else's
shoes before you cast judgement. As it's been said
"Let those without sin cast the first
stone,">>Jennifer L. Keller >On Jul 29, 2012, at
9:07 PM, Kelly Pierce wrote:>>> Bill,>> >> Realize
that blindness from diabetes is completely
avoidable and type>> II diabetes is largely or
fully reversible. He likely didn't put much>>
energy or focus on obtaining good health and he is
likely similarly>> motivated at being an
independent blind person. As Federation leaders>>
speak of endlessly, attitude about blindness and
disability is the key>> factor for independence.
If he isn't putting out much energy into>> living
well, then the benefits of quality anything will
be limited.>> >> Kelly>> >> >> >> On 7/29/12, Bill
Reif <billreif at ameritech.net> wrote:>>> Today's
Chicago Tribune's news section actually has three
articles about>>> blindness. While two of them are
factual and harmless enough, the below>>> combines
all the worst stereotypes imaginable. It makes
those who lose sight>>> late in life seem fragile
emotional wrecks, the process of mobility a>>>
tortuous ordeal, and the effectiveness of programs
to help us only marginal.>>> The article includes
one interesting admission -- that most people
who>>> complete the training program must return
immediately before independence is>>> possible. My
heart goes out to this man, who must be
embarrassed by such a>>> description of him. I
hope he yet discovers that so much more is
possible>>> than to spend the rest of his life
warning people of the danger of becoming>>> who he
believes he is now. Meanwhile, Barbara Brotman and
the Tribune would>>> do the blind a tremendous
service if she would more accurately describe
the>>> possibility of a decent way forward, as
made more likely through>>> participation in a
training program with higher expectations -- one
that>>> does more in several months than teach
someone how to pour coffee and>>> complete a
two-block rehearsed walk.>>> >>> Bill>>> >>> >>>
>>> >>> >>> -------- Original Message -------->>>
Subject:>>> Article from Chicago Tribune News 2012
07 29>>> Date:>>> Sun, 29 Jul 2012 19:24:06 -0400
(EDT)>>> From:>>> NFB-NEWSLINE Online
<nfbnewsline at nfb.org>>>> To:>>> William B. Reif
<billreif at ameritech.net>>>> >>> >>> Learning to
live once again after late-in-life blindness.
Barbara Brotman,>>> Tribune reporter. Jim
Juchcinski stopped at the front desk. . You
heading>>> out, Mr. Juchcinski? the security guard
asked. Outside, where there were no>>> walls to
hold on to? Where there were cracked sidewalks,
cars swerving into>>> parking lots, harried
pedestrians rushing by? Outside, with no arm to
grasp,>>> no teacher's voice to follow, alone on a
walk for the first time in two>>> years? Yes," he
said. I'm going to take a stroll. Close your eyes.
Now take>>> a step forward. How far can you get
before fear and disorientation grind you>>> to a
halt? Ten steps? Fifteen, before you open your
eyes? Juchcinski doesn't>>> have that option. The
Oak Lawn man is among 29,000 adults in Illinois
who>>> are completely blind, and must walk -- and
cook, read, work and go about>>> life -- in the
dark. It is a learned process. And if you have
seen someone>>> with a long white cane walking
alongside a sighted person, you may have>>>
spotted a lesson in progress. Juchcinski never
thought about blindness. If>>> he had, he might
not have ignored his diabetes for more than 20
years.>>> Instead, the disease raged out of
control, and diabetic retinopathy began>>>
stalking his vision. Blood vessels in his eyes
hemorrhaged faster than>>> surgeries could stem
the damage. On May 25, 2010, Juchcinski awoke
from>>> surgery to darkness. He never saw again.
Juchcinski, 60, had worked for 35>>> years as a
pipe insulator. He worked under contract at all of
Commonwealth>>> Edison's nuclear power plants and
several fossil power plants, often as>>> general
foreman or superintendent. Now he needed his wife
to pour his>>> coffee. His mood darkened; his
world shrank. He went out rarely, and then>>> only
on the arm of his wife, Kathy. At least every
other day, I started my>>> day with a cry," he
said. Which gave him a lot in common with those
who come>>> to the Illinois Center for
Rehabilitation and Education, known as
ICRE-Wood,>>> to learn how to manage life without
sight. Everyone cries when they lose>>> their
sight, Derrick Phillips, the center's
superintendent, told students at>>> the first
meeting of the session Juchcinski would join.
Phillips is blind,>>> and he had cried too, he
told them. But one day at ICRE-Wood, a couple
of>>> other students led him out of the building
and down the street -- three>>> blind men, walking
on their own to a convenience store. Phillips
cried again>>> -- only this time, because he saw
the possibilities. ICRE-Wood is the only>>>
state-run vocational training program for blind
adults in Illinois. People>>> come from across the
state, some staying in its dormitory rooms, for
its>>> 13-week intensive program in computer
skills, Braille, cooking, cleaning and>>> mobility
-- how to travel independently using a cane. It is
a kind of boot>>> camp for the blind. We deal with
people in crisis, people who just lost>>> their
sight," Phillips said. They don't come right away.
It often takes>>> months or even years for people
to acknowledge that they are visually>>> impaired
enough to need help, or to learn that there is
help available at>>> ICRE-Wood or agencies like
the Chicago Lighthouse or Second Sense
(formerly>>> the Guild for the Blind). Two years
after he lost his sight, Juchcinski sat>>> in the
office of Mae Michels, his orientation and
mobility teacher, his>>> solid frame squeezed into
a chair. His T-shirt, which he had had made,>>>
hinted at the joker behind the dark glasses:
"Blind Man Walking," it read.>>> Michels, a
diminutive and sprightly 22-year veteran of
teaching mobility to>>> the blind, listened as
Juchcinski told her his goal. I want to walk down
the>>> street," he said. I want to walk my dog. He
wasn't sure how he was going to>>> do it. Just
walking around his Oak Lawn condo, he bumped into
walls so many>>> times that he knocked down some
of the framed art. He joked with Kathy that>>> she
didn't have to worry about him dying of diabetes;
he was going to die of>>> a head injury. But
Michels nodded. She would teach him to walk down
the>>> street. She would take him step by step,
starting with walks down the>>> hallways at
ICRE-Wood. The crucial tool would be his cane,
which he had been>>> given but never really taught
how to use. You really need to listen to the>>>
cane," she told him. The cane acts as a hand,
helping the user feel the>>> difference between
surfaces like tile floor, pavement and grass. It
delivers>>> audible clues, making a different
sound when it hits a brick wall instead of>>> a
wood door. He would also learn to use his senses
of hearing, smell and>>> touch. And his memory: He
would have to count doorways and remember how
many>>> he needed to pass before reaching, say,
the washroom. Two weeks into the>>> program, he
stood at the front desk in the main lobby. His
path to a walk>>> outside began with learning how
to find his way around the building.>>>
Hesitantly, under Michels' watchful eye, he walked
along the edge of the>>> desk toward the elevator,
his cane finding the edge where the desk met
the>>> floor. Scrape, tap. Scrape, tap. Scrape,
tap. He got stuck in the small>>> cubby with the
pay phone. He faced the wall for a few moments,
tapping,>>> before finding his way out. He
navigated the long halls by memory, counting>>>
doorways to locate classrooms, and by senses.
Every sound was a clue. The>>> echo of Michels'
voice outside the wide stairwell upstairs. The
change in>>> his own voice as he got closer to a
wall. The pounding music from the gym.>>> The
cane's metallic echo against a baseboard radiator.
Even the air held>>> information. Sighted people
might never notice, but in the space where one>>>
hallway intersects another, there is a slight
breeze. Afterward, back in>>> Michels' office,
Juchcinski was drained. It's like going back to
high>>> school," he said. It's a lot to absorb. A
few days later, he got lost in a>>> storeroom. The
door had been left open by mistake. For 25 minutes
he tried>>> to find his way out, bumping into
desks and chairs, searching for the door.>>> By
the time a maintenance man came in and found him,
he was sweating from>>> nerves and fear. He was so
angry he wanted to quit. But he didn't. Six
weeks>>> before the session's end, he ventured
outside for the first time with>>> Michels. She
taught him how to make his way through the front
entrance, with>>> its two automatic doors that had
to be activated by standing on a carpet>>> square.
He practiced repeatedly, at one point nearly
losing his balance on>>> the raised lip between
the foyer and the sidewalk. Whoa, that sure wakes
you>>> up," he muttered. On Chicago's Wood Street,
he took Michels' arm. She>>> described the route
as they walked it, in detail, down to the texture
of the>>> grass in the parkway. The week before
his classes were to end, Juchcinski>>> began a day
in a funk. I was having a bad morning," he told
Michels. I said,>>> 'I'm frickin' tired of being
blind.' " But the morning got better. With>>>
Michels at his side, Juchcinski walked the entire
route that would be his>>> solo -- this time,
heading north on Wood Street. He gripped a new
cane with>>> an easy-rolling ball for a tip to
"shoreline" the edge of the sidewalk,>>> using it
as his guide, as he walked to the parking lot up
the block. A quick>>> lesson in how to cross it --
listen for cars, check for the slant in the>>>
sidewalk down to the street -- and Juchcinski was
ready to take his first>>> solo walk. So ready, in
fact, that he decided to add another first. Not
only>>> would he walk outside by himself, but he
also would keep walking past the>>> route he had
practiced and go all the way to the intersection
with Taylor>>> Street. On a blazing hot morning in
mid-July, the last day of his session,>>>
Juchcinski stood at ICRE-Wood's front desk, three
months of training behind>>> him and his first
solo walk ahead of him. I'm ready to rock 'n'
roll," he>>> said. Happy trails," Michels said,
smiling. Take your time," the security>>> guard
called out. I have no choice," Juchcinski said. He
went out the door.>>> Down the edge of the
sidewalk. Down the ramp. North on Wood Street.
Early>>> morning commuters rushed past. The Pink
Line rumbled. Sirens wailed. And>>> then, halfway
to the parking lot along ICRE-Wood's chain-link
fence, tears>>> slipped out from behind his dark
glasses. He was crying with pride. He was>>>
walking by himself -- slowly, but with confidence.
After sniffling a few>>> times and murmuring,
"I'll man up," he kept walking. But he had lost>>>
concentration. He veered to the other side of the
walk. When his cane>>> touched grass, he knew
something was wrong. I think I went too far to
the>>> left," he murmured. He stepped into the
grass and nearly lost his balance.>>> He righted
himself, crossed back over the sidewalk again and
got to the>>> rubber domes marking the parking lot
entrance. He waited and listened. Then>>> he
started crossing the parking lot entrance. But he
veered right, and>>> walked into the lot. His cane
touched a parked car. He turned around, but>>> the
cane got stuck in the wrought-iron fence. Michels
tells students to ask>>> bystanders for help if
they need it. Juchcinski did and within a moment
was>>> out of the parking lot. It was time to
cross uncharted territory. He stepped>>> forward
on the unfamiliar sidewalk. Methodically, he swept
the cane from the>>> center of the sidewalk to
where it met dirt at its right edge. Step after>>>
step, he followed that shoreline until his cane
reached something that felt>>> different -- the
raised domes marking the end of the sidewalk. He
was at the>>> corner of Wood and Taylor streets,
and he was grinning. He kept grinning>>> even
after he collided with a fellow student while
walking back. And after>>> he stumbled into a tree
and landscaping rocks next to the front door. In
29>>> minutes, he had traveled 0.12 miles, and a
long way toward independence.>>> Like 80 percent
of students, Juchcinski will go on to a second
13-week>>> session at ICRE-Wood. He is learning
more than mobility; he has been pouring>>> his own
coffee for months. After graduation, he has
another goal: to become>>> a motivational speaker
for people with diabetes, offering his blindness
as a>>> powerful warning. He walked into the
lobby, where Michels was waiting with a>>> smile
and congratulations. Students are required to
check back in at the>>> front desk. Juchcinski
stood in front of the security guard. I'm just
coming>>> back," he said, "from a walk."
---------- blbbrotman at tribune.com>>>
chicagotribune.com/blindness See a video of Jim
Juchcinski learning to>>> become independent
again. ct12 0011 120729 N S 0000000000
00005490.>>> ILLUSTRATION: Photo(s) Graphic(s).
Photo: Jim Juchcinski, 60, of Oak Lawn,>>> with
mobility instructor Mae Michels, steps toward
independence outside a>>> Chicago center. HEATHER
CHARLES/TRIBUNE PHOTO Photo: Jim Juchcinski,
who>>> lost his sight in 2010 because of diabetic
retinopathy, learns to walk>>> independently
again, guided by mobility teacher Mae Michels.
HEATHER>>> CHARLES/TRIBUNE PHOTOS Photo: With
Michels' help, Juchcinski has learned to>>> use
his sense of touch and a cane to detect
differences in surfaces -- such>>> as tile floor,
pavement and grass -- while walking. Graphic:
Vision loss>>> from diabetes Diabetic retinopathy
is the leading cause of blindness in U.S.>>>
adults ages 20 to 74. The disease involves damage
to the blood vessels of>>> the retina. PREVALENCE
AMONG DIABETICS In the U.S. Diabetics with>>>
retinopathy: 28.5% Retinopathy occurs more often
in male diabetics Men:>>> 31.6% Women: 25.7%
899,000 Americans with vision threatening
diabetic>>> retinopathy SOURCE: Centers for
Disease Control and Prevention/TRIBUNE\ ->>> See
microfilm for complete graphic.>>> >>> >> >>
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