Monday, December 14, 2015

Rays of Light and Rays of Hope



There is no organization like the American Cancer society for people who are living with potentially blinding diseases.  The book, Living with Low Vision: A Resource Guide for People with Sight Loss, discusses the importance of self-help support groups.  These are not the same as structured low vision support groups in medical centers where participants receive information but do not share personal experiences.  Peer support groups are more often found at independent living centers or online.

There are many books by or about people who have lived with sight loss and blindness.  I found three of these books when I wasn’t looking.  Singer and songwriter, Ray Charles’ life story was made into the movie, Ray, and was mentioned in the first chapter of Destiny by T. D. Jakes (2015).  The movie was based on Ray Charles’ autobiography, Brother Ray.  The Hadley School for the Blind announced last month that they will have a call-in interview with the blind mezzo soprano and business woman, Laurie Rubin about her book, Do You Dream in Color?  Fanny Crosby, a biography of the blind woman who wrote almost 9,000 poems and hymns such as “Blessed Assurance” more than 150 years ago was located after she was mentioned several times in Songs in the Night, Inspiring Stories behind 100 Hymns Born in Trial and Suffering.  All of these books as well as many other autobiographies and biographies are available from the National Library Service for the Blind and Physically Handicapped, but they are difficult to find if you don’t know the title or author.  Autobiographies and biographies written by people who are living with potentially blinding eye diseases or by doctors who have seen lives change because of modern surgical advances would be welcome sources of information.

 Brother Ray by Ray Charles shows a man who lost his sight slowly as a child from an eye disease that might have been a form of glaucoma.  After attending a school for the blind and losing his mother, Charles who learned Braille in 10 days and refused to use a white cane travelled by bus across the country to begin his music career.

In contrast, in Do You Dream in Color, Laurie Rubin’s autobiography, she shares her very privileged life where she lacked for nothing, had many doors opened for her, and learned how to open doors that many would have thought closed.  Rubin recalls the discrimination she encountered as she pursued a career as an opera singer.  Her book gives one of the best descriptions of how people train and live with guide dogs.

Fanny Crosby’s life is a paradox since she preached the Bible passage, “I can do all things through Christ who strengthens me” and set the bar and the philosophy that people living with blindness can do anything that sighted people can do even though she never learned Braille and dictated her hymns and poems just as Ray Charles had dictated the music he wrote to his musicians.  Crosby’s determination to do everything a sighted person could do was formed long before automobiles, airplanes, and computers were invented.  While she was able to ride a horse, she would not be able to pilot an airplane or drive a car.  She, like many of her peers today, would do some of her work using readers, scribes, shoppers, and drivers.

  All three books are rays of light and rays of hope for people who are living with blindness or low vision.  They teach readers about how real people live with the uncertainty, fears, and challenges that come with the diagnosis of a potentially blinding eye disease and its progression.  The resource that made the biggest difference in my life, however, did not come from any book about eye diseases but from the movie, The Theory of Everything, about Stephen Hawking.  His life shows that loving what is left while living with a disability sometimes means slowly losing more of what is left because of the chronic nature of the underlying disease.  This adjustment requires a lot of self love and a lot of love from others, including the love and dedication that comes from engineers and computer programmers who work to make the screen-readers and other adaptive technology people with disabilities use available.

In The Theory of Everything movie goers also see that it is very normal for a person to want to quit when medical procedures or daily life make living with a disability and a chronic illness overwhelming.  Hawking did not quit but continued his work in spite of the many transitions he experienced.

 T. D. Jakes says in Destiny, “You are a champion when you overcome adversity and go back to doing what you were doing before.”  Ray Charles, Laurie Rubin, Fanny Crosby, and Stephen Hawking are all champions who did not let adversity stop them from doing the work they loved.

If you are living with low vision or working with someone who is learning to love what is left, I hope you found this blog helpful and find a self-help support group where solutions to everyday problems are shared and friendships are formed in the community where you live.  Social media is wonderful, but it does not replace face-to-face meet-ups with your peers.  If there is no self-help support group where you live, you might want to start one at your library or church.  Instructions for starting a self-help support group are available online and at some organization for the blind websites.  As you are living with low vision and loving what is left, you can become a ray of light and ray of hope to someone else.    

Tuesday, December 8, 2015

O.O.P.S.: Optimizing the Options of the Partially Sighted



I have been reading several books about or by people who are or were blind.  I went back to the library descriptions on BARD for bibliographic information I need for my next blog post   and started noticing that all of the books were described as "Disability," so I went to the subject search drop down box and found a file named "Disabilities."  When I clicked on this link and it opened, it said that there were more than 1000 books as entries.  They are arranged in alphabetical order.  GROAN!

I started going down the alphabet and realized that this was getting me nowhere.  On a whim, once I got past all the “B” books with “Blind” as the first word in the title, I went to the “L”'s and found a book on living with low vision published in 1996.  At first I vented:  I've been reinventing the wheel for 20 years?  I did all that research for nothing?  My doctors could have given this book or at least the title to me!  You get the picture.  It was not pretty.

Now I will read the book that I should have read a very long time ago, Living with Low Vision: A Resource Guide for People with Sight Loss, to see if there is any information I need.  I will also search to see if this book has been revised and updated in the past 20 years.  I have no idea how long this book has been available in audio format.  BARD has been adding many books about blindness and low vision in the past year that were published years, decades, and even centuries ago, and these titles are most welcome.  

Meanwhile, I want to remind my Information Studies’ colleagues about the most important course we took in ALA accredited library schools:  Cataloging and Classification.  (No, it was not the course telling us that computers are the greatest things since air.)  The Dewey Decimal System and the Library of Congress Cataloging System were created so every book in a library or every subject heading would not be shelved alphabetically.  There are simply too many subheadings.  The same standards that are used in public and university libraries must be followed online by special libraries serving the blind and physically handicapped.

All current online library tools are not meeting the standards of their in house predecessors.  I have not found some books that are in BARD because the descriptors were not consistent.  For example, if you leave the period after “Dr. Seuss,” you will find just a few books.  If you leave the period off, you will find many books.  A professor with a Ph.D. in Business Information Systems who is currently teaching in a School of computing tells me that the problem with online cataloging is the result of online databases accepting information from publisher copyright information rather than the Library of congress classification.  Human error starts at the point where data is being entered.  If this is not being done by ALA accredited information specialists trained in cataloging and classification, errors will be made.

BARD also adds new books and magazines frequently.  Recently added books might appear in the “Recently Added” link for some time but not in the general database where people normally search for a book by title, author, or subject.

Several decades ago, I started a list of books on a particular subject dealing with children’s literature.  I used the card catalogues in public and university libraries and the hardcover copies of Children’s Books in Print.  My attempts to update this bibliography using the online version of the book have not been successful using any of the descriptors that were used in the past nor currently being tried by reference librarians and computer specialists.  While there are many benefits to using online systems, much important information is being lost or buried by the library standards that exist today.

If the options of the partially sighted, the blind, and people with other disabilities are to be optimized, the National Library Service for the Blind and Physically Handicapped must take a look at its computer programs and their links.  Perhaps additional links can be created or folders under existing links.  “Disabilities” could have sections for each medical condition rather than an alphabetical arrangement for all disabilities.  Until this is done, finding the information one needs will be more a case of luck than science.

Thursday, November 5, 2015

If You Don't Want to Be Trumped, Read Trump



The needs of unemployed men and women with disabilities, including veterans, are being trumped by issues as diverse as global warming and the price of prescription drugs.  If people living with disabilities want to make a comeback, they are going to have to fight back.  Trump:  The Art of the Comeback by Donald Trump opens up to two pages of "Trump's Top Ten Comeback Tips."  Whether you agree with him politically or not, the comeback tips of a man who went from being minus $900 million to running for the Presidency of the United States of America and funding his campaign by himself is worth reading.  With an unemployment rate of 70-75%, the blind and visually challenged, for example, have nothing to lose.

On page 11 of his book, Trump tells a story about the day he looked at a blind beggar and said, "...he's worth about $900 million more than me."  It was the early 1990s, and Trump had been hit hard by what he called a depression rather than a recession. .  During the early 1990s and the past twenty five years, the blind and visually challenged might not have lost $900 million, but many did lose their jobs, had to live in subsidized housing, lived below the poverty line on Social Security Disability or Social Security Retirement Benefits, were forced to remain single by the marriage penalty in the SSD and SSA Act, and sometimes went without medical or dental care when their SSD and SSA payments were above the poverty line (different for every state).  When they had to live in subsidized housing projects, they were often segregated into senior citizen buildings as people with other disabilities were required to do.  At the same time, many of them remained unemployed for more than three years and felt disgraced as their student loans were erased because the government now believed that no one would ever hire them.  Some had their relatives turn their backs on them and received lectures about how they should have taken better care of themselves.  Others listened to conservative radio talk show hosts who said that anyone on welfare should lose the right to vote.

Although the visually challenged have had many successes in higher education and the workforce, the blind beggar stereotype is still around, and the economy  has become so bad that now some homeless men are asking blind and visually challenged men and women if they can "borrow" their white cane, or stick as some call it.  Homeless men and women who are too young to know about the blind beggar stereotype are now begging from the visually challenged.  Blind men and women, many with college degrees, are volunteering at homeless shelters while they, themselves, are job hunting.  The Americans with Disabilities Act was passed in 1990.  Its mission was for people with disabilities to be treated as equals.  Equality might not have been fully achieved in the classroom or the board room yet, but it has been achieved on the street.

In all of the presidential debates, only one candidate has mentioned "the sick."  If some people with disabilities have gotten too comfortable in their discomfort zones and cannot even dream of making a comeback, this is the year to get involved and make some noise.  If they live in a state where libraries for the blind and physically handicapped were closed or services were cut during the past 10 years, they need to elect people who will once again make their needs a priority.  They must make their elected officials aware of the SSD and SSA marriage penalties and restore their right to marry and keep their benefits.

People who are living with disabilities can not only learn from Trump that there is an art to making a comeback, but can also learn from Hillary Clinton that It Takes a Village and from Carly Fiorina that it will require Tough Choices.  These books and many others that have been written by politicians are available in print, large print, Braille, and audio formats from the NLS Library for the Blind and Physically Handicapped as well as commercial sources such as book stores and online. 

Friday, October 30, 2015

An Apple a Day or Every Other Day



In a previous post, I mentioned that I was persuaded by an adaptive technology trainer at the Library for the Blind and Physically Handicapped to purchase an iPhone in order to buy and use the KNFB app.  The phone came with no instructions, including how to turn it on and off; but the trainer was showing me what to do until he moved out of town.  He assured me that I would be able to get any help I needed at the Apple store or from AT&T where I purchased the phone.  I have not been happy with the service I received from AT&T nor the Apple product, but I decided not to share my experience—until now.

I received the November issue of Consumer Vision, the online magazine (www.consumervisionmagazine.com).  A reader wrote the following:
“Recently, I got an IPhone 6 as a birthday present. I went online and tried to find a manual for it. There was a PDF version, but it’s imaged. So, when I tried to open it using Adobe, Jaws said “blank document.” Apple prides itself on having accessible equipment. Yet, when I called the Support Desk, the representative had no idea where I could find an accessible manual.”

First, Learning Ally (www.learningally.org) has an audio book, “iPhone, the Missing Manual.”  This book is for older versions of the iPhone, but its Table of Contents and content do teach the basics for most older and new models.
Second, when a PDF says “Blank Document,” it means that a document is there but cannot be read by the screen-reading software.  The item (manual) can be printed if it is not too long and scanned and read by a scanner or a sighted reader nearby.
Third, there is a Missing Manuals website online (www.missingmanuals.com).
Fourth, a PDF that says, "Blank Document," when opened can sometimes be read by a screen-reader if it is saved to "Downloads" rather than opened immediately.
Fifth, everything on your iPhone or Smart phone must be backed up, including a list of your apps and songs.  Smart phone and iPhone users have lost everything from photos to important documents during the transfer process when a phone was replaced or upgraded.

What follows is the reply I sent to an Apple survey after attending a Beginner’s Workshop at an Apple store.  My feedback was not acknowledged, and a computer savvy friend who volunteers at the Library for the Blind and Physically Handicapped says that feedback surveys are trashed.  I am sharing this today because I also received an email from NFB Newsline saying that the KNFB reader is now available for android phones.  Android phones are not sold at stores like the Apple store where “geniuses” at least try to teach customers who need to learn how to use the phone as well as accessibility features.  Please Note: If you decide to trade in your phone for an iPad or a newer model, it is only worth its parts.  In other words, the phone that cost over $500 with the KNFB app is only worth a bit more than $50.  You are expected to read ALL of the print, large and small, online BEFORE buying or learning how to use the product.

My Apple survey feedback after attending a Beginner’s Workshop:  

”Dear Apple Executives:

This survey is not accessible with screen-reading software.  The apple store was an inappropriate setting for a workshop.  The apple staff are not trained teachers and were not prepared to teach a subject as complicated as iPhone use.  The coffee bar stools were uncomfortable.  The loud music made the staff and participants yell, but they still had trouble understanding or communicating with each other.  The answer to most questions was, "Go online to learn about...."  No mention was made of the "iPhone, the Missing Manual" nor was it available for purchase in print or audio format.

The iPhone I purchased at an AT&T store did not come with a box or any instructions.  The phone was defective but was replaced last week at the Apple store.  The second iPhone came in a plain, white box that also had no basic instructions.  I was encouraged to buy the iPhone to use with a KNFB Reader.  The reader works just fine; the iPhone is so bad that I cancelled AT&T service and went back to Sprint to reactivate my cell phone.  I only use the iPhone with the KNFB Reader or YFI as I learn using the "iPhone, the Missing Manual" audio book from Learning Ally.

When I was an undergraduate in the 1960s, my university department chair quoted a character from a George Bernard Shaw play, "Those who can do; those who can't teach."  Then the professor looked wistfully out the window at the education building and said, "Those who can't teach teach others how to teach."  I never found his sarcasm to be true as I studied teacher education, but I certainly found it to be true at the Apple store.  Apple cannot teach.  Apple cannot teach its staff how to teach.  How do you recognize a person who cannot teach?  They cannot tell you what to do; they must take your iPhone and do it for you.

In the past a staff member and I have either had to go out to the Mall hallway or to a room in the back of the store to get away from the noise and hear the iPhone with voice-over on.  Staff members are constantly apologizing for the noise in the store, the uncomfortable chairs, etc.  At the same time, staff ridicule customers when they ask questions (something no trained teacher would ever do) because they are not as open to new things or as fearless as children.  EXCUSE ME!  Just because we adults are not stupid enough to touch something when we don't know what will happen does not mean we are afraid of technology.  Unlike children, most of us do not have parents or teachers nearby to undo our mistakes.  We, unfortunately, must go to the Apple store every other day because Apple cannot teach people with learning styles unlike their own.  Apple is singing to the choir, and I am not joining the choir.  Unless apple learns how to teach the rest of us who lack degrees in computing or engineering, I won't be buying another
Apple product.

Susan Bourrie, Ed.S.”

I want to thank Bob Branco, the publisher of Consumer Vision for giving his readers a platform upon which to communicate and seek answers as we live with low vision and blindness.  If you have not read this magazine, you are missing a real treat (No Halloween pun intended).