[Nfbmo] FW: [State-affiliate-leadership-list] Federation Action Needed: Challenging the Fear of Blindness
david hertweck
david.hertweck at sbcglobal.net
Sun Sep 25 01:58:26 UTC 2016
very nicely written
-----Original Message-----
From: Gary Wunder via Nfbmo
Sent: Saturday, September 24, 2016 4:58 PM
To: nfbmo list
Cc: Gary Wunder
Subject: [Nfbmo] FW: [State-affiliate-leadership-list] Federation Action
Needed: Challenging the Fear of Blindness
I got a note from the Today’s Show encouraging us to promote their segment.
Here is what I wrote to the producer whose name was on the email. Perhaps it
will help some of us in writing them and in encouraging us to do videos:
Dear Ms. Passer:
Thank you very much for sending me the note about Peter Alexander and his
sister. I have tremendous respect for both of them, but I have significant
questions about the campaign currently being conducted by the Foundation
Fighting Blindness. From what I can tell, the ice bucket challenge has no
relation whatsoever to what is being done here. What we are saying to the
public is that you can't know what it means to be blind simply by putting on
a blindfold. That experience will, in truth, only show what it is like to be
immediately deprived of sight without any of the alternative techniques that
blind people learn to use every day.
There are plenty of reasons to preserve vision, but describing blindness as
something that can be understood by living an hour under a blindfold does a
true disservice both to those who want to understand and to those of us who
live with blindness and must face the real challenges that it poses. The
real challenge is not being a blind parent-- it is taking your child to a
hospital and wondering whether or not the injury she has will be attributed
to the fact that you do not see. The real challenge of blindness is not how
difficult it is to eat but how difficult it is to get a job so that you can
earn the money to put the food on the table. The real challenge of blindness
is not how to tell one coin from another or one bill from another-- it is
getting the opportunity to earn the money that will put bills in your wallet
and let you afford the technology that reduces blindness to the level of a
nuisance and an inconvenience.
If one wants to fight blindness or preserve sight, I think that vision has
so much to recommend it that one does not have to resort to making the lack
of vision seem worse than it really is. I would like to see the stars in the
night's sky and marvel at how far the light that I am seeing has traveled. I
would like to see the expressions on the faces of accomplished actors, the
ones that win them great acclaim when delivered before a live audience or
on the big screen. I would like to see a lion chasing its prey, the flame
that launched rockets to the moon, and the beautiful colors that people try
to explain to me in words that are is in adequate as those I would use were
I to try to describe a symphony to a person who had never heard a note of
music.
I believe that people innately understand the value of the vision they have.
What they may not understand is the current state of research to preserve or
restore vision. These are efforts worth funding, and the National Federation
of the Blind has actively supported rehabilitation agencies and research
institutions whose mission is to enhance vision.
Perhaps it would be helpful if NBC were to do several segments showing blind
people performing everyday tasks. Perhaps viewers would be interested in
knowing about the real problems that face blind people: fighting to get a
quality education in institutions that purchase e-readers that will not talk
or interface with braille devices; taking on social service agencies that
take newborn children from blind parents on the grounds that it would be
unconscionable to send a beautiful little child home with two people who
will not have someone with vision around twenty-four seven; focusing on what
it is like to be a blind railroad worker who is dismissed from his job when
a change in supervisor results in a decision that it is unsafe to have a
blind man in an environment where heavy equipment is used. This termination
was upheld by a court despite a flawless work record and nothing to indicate
that the blind employee was a danger to himself or his fellow workers. The
testimony of a physician was enough because, of course, the physician could
testify to this man's level of vision.
The actions I am describing do not have to be mean-spirited in order to be
wrong. Discrimination does not have to involve ill will or despicable
motives; it only requires that an action be both unreasonable and
detrimental.
Thank you for reading what I have written. I hope you can see this as more
than a negative reaction to a fundraising campaign whose goals are worthy
but whose strategy for implementing them is detrimental to blind people. No
matter how good we do at preventing blindness, there will always be blind
people through accidents and through conditions we cannot today anticipate.
This means that at least some part of our societal effort must be helping
blind people to achieve all that we can and to be the most productive
citizens we can be.
I am copying the director of public relations for the National Federation of
the blind, who can probably do a far better job than I have in explaining
our support of research and our sadness at outreach efforts that increase
the difficulty we have in getting people to understand we can function
happily and competently in the world.
Sincerely,
Gary Wunder, Editor
The Braille Monitor
(573) 268-4245
The National Federation of the Blind knows that blindness is not the
characteristic that defines you or your future. Every day we raise the
expectations of blind people, because low expectations create obstacles
between blind people and our dreams. You can live the life you want;
blindness is not what holds you back.
Make a gift <https://nfb.org/make-gift> to the National Federation of the
Blind and help ensure all blind Americans live the lives they want.
How Eye See It challenge: Peter Alexander, driven by sister's fading sight,
dons blindfold <https://protect-us.mimecast.com/s/3RQ9BwFGzEmi8>
For years, NBC correspondent Peter Alexander watched his sister
<https://protect-us.mimecast.com/s/qO4JBlsv0bnsK> , Rebecca, battle an
illness that slowly robbed her of sight and hearing.
He watched her struggles but never truly experienced them until he spent a
recent lunch hour with her — blindfolded.
At his sister’s urging, Alexander took the How Eye See It challenge
<https://protect-us.mimecast.com/s/4Q5lBaIemYWHZ> to better understand the
experiences of more than 10 million Americans affected by retinal
degenerative diseases.
The Foundation Fighting Blindness
<https://protect-us.mimecast.com/s/dqKLBoH5n4gSR> is using the challenge to
raise awareness and $2.5 million by World Sight Day on October 13. The
organization hopes the experiment educates people about blindness similar to
the way the Ice Bucket Challenge increased awareness for ALS
<https://protect-us.mimecast.com/s/Dzq2BDCem2YHX> two years ago.
Usher Syndrome is robbing Rebecca Alexander of her hearing and sight,
although a cochlear implant has enabled her to hear again. Rebecca's sight
is nearly completely gone and only getting worse.
Yet she has overcome challenges that even people with sight have failed to
accomplish. She climbed Africa's Mt. Kilimanjaro last year and, more
recently, swam the choppy San Francisco Bay from Alcatraz prison to shore.
That's why her brother was certain he could make it blindfolded through just
one lunch at a nice restaurant. Easier said than done.
To learn more about the How Eye See It challenge and about the treatments
being developed for inherited retinal degenerative diseases, go to the
Foundation Fighting Blindness
<https://protect-us.mimecast.com/s/dqKLBoH5n4gSR> and #HowEyeSeeIt
<https://protect-us.mimecast.com/s/dqKLBoH5n4gSR> .
If you have any questions about TODAY’s #HowEyeSeeIt challenge with Peter
Alexander and this story, please contact Emily.Passer at nbcuni.com
MANDATORY CREDIT: NBC News, TODAY Show; TODAY.com
FULL LINK:
http://www.today.com/health/how-eye-see-it-challenge-peter-alexander-driven-sister-s-t103196
<https://protect-us.mimecast.com/s/3RQ9BwFGzEmi8>
EMBED CODE: <div style="position:relative; padding-bottom:63%;
padding-bottom:-webkit-calc(56.25% + 50px); padding-bottom:calc(56.25% +
50px); height: 0;"> <iframe style="position:absolute; width: 100%;
height: 100%;" src="http://www.today.com/offsite/today/56051319
<https://protect-us.mimecast.com/s/8J3mBbS80mGH6> " scrolling="no"
frameborder="0"></iframe> </div>
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