[Nfbmo] FW: [State-affiliate-leadership-list] Federation Action Needed: Challenging the Fear of Blindness

Gary Wunder gwunder at earthlink.net
Sat Sep 24 21:58:20 UTC 2016


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>  

 

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