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.