The New York Times
By JANE E. BRODY, February 27, 2017
Stanley F. Wainapel, clinical director of physical medicine and rehabilitation at Montefiore Medical Center in the Bronx, admitted that “adapting to vision loss is a major challenge.” But he disputed Mr. Hoagland’s allusion to “enforced passivity,” pointing out that many advances in technology – from
screen-reading software for computers to portable devices that read menus or printed letters with a delay of only seconds” – can keep productivity, creativity and pleasure very much alive for people who can no longer see.
Rabbi Michael Levy, president of Yad HaChazakah, the Jewish Disability Empowerment Center, also acknowledged that “transition to a world without sight is far from easy.” But he insisted, “Blindness does not cut me off from the
world.” He cited skillful use of a cane, travel devices that tell him where he is and what is around him and periodicals available in real time by telephone among myriad other gadgets that “see” for him.
Annika Ariel, a blind student double-majoring in English and political science at Amherst College, wrote that her problems are not with her blindness but rather from people’s attitudes that depict the blind as helpless and dependent.
She said she travels independently, uses assistive technologies to complete her work as efficiently as others who can see, and excels academically and socially.
Equally inspiring was the response of Mark Riccobono, president of the National Federation of the Blind, who became legally blind at age 5 and lost all useful vision to glaucoma at 14.
“I once let blindness make me a passenger in my own life,” he wrote. “That changed when I encountered a vast network of other blind people who convinced me that blindness did not define me, who taught me nonvisual ways to handle everyday and not-so-everyday tasks, and encouraged me to expect more of myself.
“I am now a successful blind man married to a blind woman, living a rich, full life with her and our three children” while heading a membership organization that helps tens of thousands of blind people. He met his wife, who was born blind, when they were both students at the University of Wisconsin.
Mr. Riccobono, 40, said in an interview that he grew up trying to hide his blindness until he met people at the federation who taught him that “it was respectable to be blind” and that he could do things as effectively as sighted people do.
“I’ve taught many blind people to use a chain saw,” he told me, noting that many activities that we assume require vision really don’t. For example, I knew a blind professor at Cornell University who continued to build exquisite wooden canoes for decades after losing his sight. A blind man who lived in my neighborhood volunteered at a hospital, playing piano to entertain patients.
A screen-reading computer program called Jaws enables Mr. Riccobono to “read” what’s on the screen, type and send email using synthesized speech. With the KNFB Reader app on his smartphone, three clicks on the home button turns it into
a reading machine that takes pictures of text – a menu, label, whatever – and reads it out to you, he said.
He credited his federation with having “built the best news information source out there – the NFB Newsline, with access to hundreds of publications, breaking news, weather” that delivers information orally by telephone, on a mobile phone, on a computer via a screen reader or in Braille.
He navigates using a long white cane, which he described as “one of the most elegant pieces of technology for blind people. I find things with my cane and plunk the image into a mental map of my environment.” He also uses the same GPS system available to sighted people.
Mr. Riccobono emphasized the importance of being proactive before a progressive disorder destroys vision entirely. Two of his three young children have the same condition that rendered him blind, and while they can still see, they are learning to read both print and Braille.
He advised me to tell my three friends who have varying stages of age-related macular degeneration to start now to learn to use the tools they will need when they can no longer see clearly. “It will make their adjustment that much easier,” he said.
Of course, preparation is not possible for people who become blind suddenly through accident or disease. In a study of nine women blinded during military service, researchers from King’s College London reported that they struggled at
first to adjust to vision loss, experiencing low self-esteem, social withdrawal and depression.
The women were initially reluctant to ask others for help and struggled by themselves. But over time, although they occasionally felt frustrated, angry and depressed, they learned how to “cope with the challenges and limitations
associated with being visually impaired,” the researchers wrote in The Journal of the Royal Army Medical Corps.
The American Council for the Blind has an online list of all manner of products that can smooth the way for people with limited or no vision, including information on where to buy them. Products range from voice-activated television remotes and talking calculators to sewing and kitchen aids. There are also products for people with both vision and hearing loss.
Equally important is for sighted individuals to know how to interact effectively with people who are blind or visually impaired. First and foremost, be sure to identify yourself by name (and association, if your name may not immediately ring a bell). Don’t assume the person can recognize you by your voice.
Don’t channel your remarks through a third person, and speak naturally.
Don’t restrict your use of words like “see” or “look” when they are a logical component of a conversation. And don’t raise your voice, unless the person who can’t see also can’t hear well.
Don’t assume. Always ask first if the person needs help, whether that involves crossing a street, finding a building or carrying a package. When providing directions, be specific, using words like “on the left” or “on the next corner.”
This is the second of two columns on vision loss and blindness.
A version of this article appears in print on February 28, 2017, on Page D5 of the New York edition with the headline: Losing Vision, but Not Independence.