[il-talk] With articles such as this, it's no wonder people fear and dred blindness.
Jenny Keller
jlperdue3 at gmail.com
Wed Aug 1 01:04:32 UTC 2012
Thank you all for the supportive messages.
Jenny
On Jul 31, 2012, at 6:25 PM, Connie Davis wrote:
> 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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