[Ct-nfb] bionic eye

Mon Apr 28 00:20:58 UTC 2014

Here’s a few scents from me;

In my life I have heard surprisingly many (including those who lost their vision as adults or adolescents) who say they would not go through a procedure that would provide full vision. The explanation? They enjoy being blind. They learned about beauty, how to enjoy life, and how to function day to day as blind individuals. Blindness turned out to be an opportunity of sorts, and a source of strength for these particular people. I think part of the NFB’s mission is to get as many blind people into such a state of mind. Now perhaps Justin or myself would consider getting our full vision restored should the opportunity arise with no strings attached. It would be a matter of convenience I suppose. Like I sort of indicated yesterday, stuff like a bionic retina isn’t likely to come without physical pain or a hefty price tag. 

Throughout my life I’ve constantly heard about cures for blindness, ranging from faith healers to “scientific breakthroughs”. As an adult and high functioning blind guy (not to mention a Federationist), my first impression when I hear these things is the question, what’s the motivation behind this? It’s always such a negative view of blindness at the core. There wouldn’t be attempts to make blindness go away if there wasn’t demand. The demand comes from lack of information, misinformation, fear, pain and Dred regarding blindness, as well as perhaps simply wanting something other people have. I realize that in my life blindness is far from a big deal personally. What is a pretty big deal is how people in my environment view my blindness, my cane, etc. They view it as something scary or veritably undesirable, and something to be pitied and in need of intervention. As a blind guy that doesn’t think much about blindness otherwise, and who feels deserving of some level of dignity  and respect, I don’t really cotton to the gloomy messages hitchhiking in these miracle cure stories. I think you all deserve dignity, respect, and positive opportunity as well.

 Trevor

From: Ct-nfb [mailto:ct-nfb-bounces at nfbnet.org] On Behalf Of stanley torow
Sent: Sunday, April 27, 2014 1:31 PM
To: NFB of Connecticut Mailing List
Subject: Re: [Ct-nfb] bionic eye

Justin, some of us have adapted to no or low vision, but don't for a minute believe that if we could get sight, we would jump at the chance. since it's not  possible now, we use every thing we can do that is offered to us. we still live productive lives. and enjoy life..

eileen

ps just as hearing disability would like to get hearing. since i guess you have never had sight, you don't miss it., but for us that had sight, we do miss it, but we don't dwell on it. we get on with our lives & live it to the fullest

eileen

On Sun, Apr 27, 2014 at 03:21 PM, Justin Salisbury wrote:

Friends and Colleagues:

I have read the responses on this thread, and I see two distinct categories of responses, as well as two distinct categories of responders.  I will first define the categories of responders as follows.  Group 1 is those who have attended and graduated from structured discovery training centers.  Group 2 is those who have not.  I understand the messages from the center graduates to address the incorrect, dramatic depiction of blindness as hopelessness, and I understand the messages from the others to yearningly describe the merits of eyesight.

To explain my discontent with the depiction of blindness as hopelessness, I will walk us through the article and point out where the authors are in error.

Title: 'Bionic eye' offers hope to those with vision loss

I interrupt immediately to ask what kind of hope I need and what miserable situation I am enduring in order to need such hope.  Back to the article…

A "bionic eye" may now help blind patients regain at least a sense of vision <http://www.freep.com/article/20140423/FEATURES08/304230072/Bionic-eye-University-of-Michigan> .

Linda Schulte, the first patient with the implanted technology since it was approved by the Food and Drug Administration last year, couldn't be more thrilled.

Not long ago, her new "eye" homed in on the stripe on her grandson's T-shirt while he was outside on the driveway at her Ottawa, Ohio, home.

There were flashes of light and movement and — combined with the bounce of a basketball on pavement — the 66-year-old Schulte said she could "see" her grandson for the first time.

"To me, it was seeing him," she said. "I know I'll never see his face, but I could judge how tall he is and everything. I knew where he was moving."

Analysis: The author has chosen a deeply emotional reaction of someone regaining some sight.  This reaction can only occur in someone who fixates on the lack of eyesight as a problem.  The person who fixates on the vision loss itself as a problem in life is in a really rough place, and I’m truly grateful that the National Federation of the Blind has helped me escape from that place.  If I were still there, I would be fighting the wrong enemy and make no progress toward the fulfillment I now pursue.  I understand that reporters want to strike up emotions and usually harness common misperceptions in society in order to do it, but it inherently reinforces those misperceptions. Back to the article…

The Argus II Retinal Prosthesis System, offered at the University of Michigan's Kellogg Eye Center, was surgically implanted in Schulte's left eye in January.

It uses a pair of glasses with a small video camera that wirelessly transmits signals to Schulte's implant, converting them into a series of small electrical pulses that stimulate her retina's remaining cells.

The result: Flashes of light that signal great contrast – the outline of a window or the edges of a white plate against a black tablecloth, for example.

It takes some practice, but "by using those flashing lights as a cue, (patients) can trace the plate," said Dr. Thiran Jayasundera, a retina surgeon at Kellogg.

I interrupt to ask how on earth this is useful beyond the tools we now have.  Can I not find my plate with my hands?  Back to the article…

He is scheduled to talk about the procedure during a meeting of the American Society of Cataract and Refractive Surgery Friday in Boston.

The device is used for those who have retinitis pigmentosa, a degenerative disease in which patients experience a gradual loss of side vision and night vision, and later of central vision, which can result in near blindness.

Not all of the 100,000 or so people in the U.S. with retinitis pigmentosa can benefit from the bionic eye. An estimated 10,000 have vision low enough, said Dr. Brian Mech, an executive with Second Sight Medical Products Inc., the Sylmar, Calif.-based company that makes the device. Of those, about 7,500 are eligible for the surgery.

Schulte was 22 when sunlight began to hurt, she said. Over the next two decades, her visual world shrank. She began to lose peripheral vision. And at some point, her tunnel vision was so tight that, when she looked across the dinner table at her husband, she could see only one of his eyes at a time.

I interrupt to point out that this is exactly what I see when I look across the dinner table at my girlfriend.  While the author is hoping that this will pull at heartstrings again, I can assure you that I do not have any feelings of self-pity or frustration at the fact that I cannot see more of her at one time.  If I were to hold these thoughts, I would be stuck in quicksand and never be free to move on with my life.  Back to the article…

In earlier stages of the clinical trial with the prosthetic retina, many participants were able to locate lights and windows, follow lines in a crosswalk, and avoid running into things as they walked. About half were able to read letters that were about 9-inches high. Some could sort laundry or determine where other people were located in a room.

Roger Pontz, 55, received his new eye in January as well. He now moves around his Reed City, Mich., home without having to use his hands to avoid running into walls. He sees figures move in front of him. His wife asked whether he could see her empty oatmeal bowl the other day at a restaurant. He answered by immediately putting his fingers on it.

I interrupt a final time to ask how these tasks cannot be performed by a blind person, with the only exception being the reading of 9-inch letters, a skill of nominal practical use.  Is it really that widely believed that blind people inherently run into things as we walk?  Are there no other ways to find crosswalks?  Do totally blind people need someone else to sort laundry for them?  Are we really at risk of running into walls in our own home, and is using our hands or a cane inferior techniques?  It is obvious that this author believes that nonvisual techniques are indeed inferior to visual ones.  Let us finish the article…

Pontz, a dishwasher at a bowling alley, said he is convinced that his training exercises will continue to grow his visual abilities.

"But if it doesn't, I'm happy with what I've got so far," he said.

Excellent.  We conclude with a happy blind person who can smile despite all of the horrors to which blindness inherently subjects him.  He clearly has seen his life improve by acquiring just a little bit of sight.  Let us all feel like there is a glimmer of hope for the otherwise hopeless blind.

Does anyone really benefit from what little sight this product currently offers?  It encourages people to use visual techniques for tasks that are still completely possible nonvisually.  It encourages people to focus on regaining vision instead of acquiring the proper training for confidence and independence as a blind person.  This training will really free them.  Someone who functions visually with this small amount of vision is not going to have the fulfilling life of a center graduate.  This article goes back to the status quo where blind people are patients instead of people.  Patients have something wrong with them and must be cured.  We know that the real problem of blindness is not the lack of eyesight; it is the lack of understanding and misperceptions which exist in society.  This lies at the core of our movement, and it is vital that the leaders at the core of our movement understand this and not endorse these depictions.

Finally, I want to address the argument about seeing children’s faces.  We need to understand each other in order to work together.  I do not have children, but I do have basic human ability to reason.  If we cannot see our loved ones’ faces and no medical cure for our medical conditions causing blindness currently exist, it is not productive to wish that we will.  My Granddad died in 2003, and I would love to see him again, but I do not fixate on missing him.  I cherish the memories of him teaching me about old farm equipment and starting blueberry-throwing fights with all of my cousins, and my grandmother gave me his wallet when I graduated from college, still including his Blockbuster card and all.  I do not long to see him again, at least on this side, because doing so will not improve my quality of life.  There is a matter of closure in how some of us deal with blindness.  It is most unfortunate, but some of the low-end rehabilitation programs, such as the Carroll Center for the Blind, actually preach a loss model, where losing vision is a dying.  Before the Federation found me, I attended the Carroll Center, and I was taught to mourn my blindness.  Those of us who have fallen victim to these misperceptions suffer because they mourn blindness; they do not suffer from the blindness itself.  I remember the days when I mourned blindness and hope that we can all work toward the day when nobody does.

Sincerely yours,

Justin Salisbury

From: Ct-nfb [mailto:ct-nfb-bounces at nfbnet.org] On Behalf Of Blindhands at aol.com
Sent: Saturday, April 26, 2014 1:16 PM
To: ct-nfb at nfbnet.org
Subject: Re: [Ct-nfb] bionic eye

You want me to put a price on seing my Grand children that I have never seen?  or my children that I haven't seen in almost 17 years?  You can  not put a price on that, but it would be worth it for me.

I can live without sight and manage well enough.  I have traveled near and far[all the way to India], but to see my family once again, well maybe you don't have children or Grandchildren and can't understand.

Joyce Kane
www.KraftersKorner.org <http://www.krafterskorner.org/> 
Blindhands at AOL.com 

In a message dated 4/25/2014 10:54:17 P.M. Eastern Daylight Time, tattenberg at gmail.com writes:

What if they really hurt and were expensive?

T

From: Ct-nfb [mailto:ct-nfb-bounces at nfbnet.org] On Behalf Of Hamit Campos
Sent: Friday, April 25, 2014 7:51 PM
To: 'NFB of Connecticut Mailing List'
Subject: Re: [Ct-nfb] bionic eye

Yeah. Sure being blind isn’t the end of rthe world, but hell if I had a future chance at new retnas you best believe I’d take it Why not?

From: Ct-nfb [mailto:ct-nfb-bounces at nfbnet.org] On Behalf Of Blindhands at aol.com
Sent: Friday, April 25, 2014 10:45 PM
To: ct-nfb at nfbnet.org
Subject: Re: [Ct-nfb] bionic eye

    WowI have nothing wrong with my eyes and I have nothing wrong with my brain.  It is the optic nerve, so I need a new cable wire to connect to the eye and brain.  I would do anything almost to see my Grand children, kids and Mom.  It is too late to see John, but when I pass over that bridge I will see him and all my doxies and Seeing Eye dog, Corey.

Joyce Kane
www.KraftersKorner.org <http://www.krafterskorner.org/> 
Blindhands at AOL.com 

In a message dated 4/25/2014 6:52:07 P.M. Eastern Daylight Time, hamitcampos at gmail.com writes:

I’d say epic man, but it’s out lines again. Sigh. Oh well, at least they are trying. Man I need need new retnas man. Lol. No but seriously, if they could do that for some one like me who’s retnas are essentially walls, but for the parts that do work cause I can see lights, that would be just so epic man.

From: Ct-nfb [mailto:ct-nfb-bounces at nfbnet.org] On Behalf Of Elizabeth Rival
Sent: Friday, April 25, 2014 10:28 AM
To: 'NFB of Connecticut Mailing List'; info at crisradio.org
Subject: [Ct-nfb] bionic eye

Subject: 'Bionic eye' offers hope to those with vision loss

Check out this article from USA TODAY:

'Bionic eye' offers hope to those with vision loss

http://usat.ly/1igAgoi

Sent from my iPad

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