Sunday, January 18, 2015

The Name Game



When people are told that they have a potentially blinding disease, they immediately think about total blindness.  This is because most references to blindness in literature and films portray blindness as total.  Webster’s Dictionary more accurately defines “blind” as ”lacking or quite deficient in ability to see.”  The deficiencies are so hard to define that one medical doctor and researcher referred to them as “the gray area between sight and blindness.”

I have spent 67 years with various degrees of partial sight, impaired vision, low vision, or whatever you want to call it.  It is not gray.  It is just different, and it is different for every person and every potentially blinding disease.  There are visual simulations that attempt to share with caregivers and practitioners an understanding about what a person with impaired vision sees.  While these representations might make the viewer more sensitive, they do not give the full picture.  Only the individual can give that.  On rare occasions, an opthhalmologist will ask, “What do you see when you look at me?”  People wanting to steal your money at a bus stop or on the sidewalk will always ask for this information because they want to know if they can be identified.  While some people see nothing, others see with only their central vision or only with their peripheral vision in one or both eyes.

The brain tries to fill in what the eye is not seeing.  This brings on the ignorant bliss that is seen in Mr. Magoo cartoons.  In the real world, however, crashing into a fire hydrant because you have lost a bit of vision just under your central vision leaves a bruised leg and ego.  Color vision impairments leave you crashing into people who are wearing dark colors when the carpet in the room is also dark.

Numerous organizations for the blind, agencies for the blind, and linguists have embraced and welcomed those people who still have some remaining sight.  The price of this inclusion is a loss of identity as those with some vision are expected to refer to themselves as “blind.”  Patients who do not know how to play “The Name Game” are in danger of losing more than just vision.  They might lose services, training, benefits, and opportunities.

Forty five years ago, I learned that glaucoma had robbed me of sight around central vision in both eyes and through central vision in one eye.  I could still read normal print, but my reading speed was very slow.  All anyone cared about is what I saw on the eye chart.  About fifteen years later, I was hired to lecture two composition classes at Saginaw Valley State University.  On the first day of classes, a young, black, male student in a wheel chair was introduced to me by his rehabilitation counselor.  They young man was blind and would be recording all of my lectures.  When I told the rehabilitation counselor about my eye disease, he said that I needed talking Books and other adaptive resources.  He gave me the contact information for the Michigan Commission for the Blind.  A debate then ensued between the Commission for the Blind and Rehabilitation Services.  All “blind” cases are supposed to be handled by the Commission, and a client must be “legally blind.”  Since I was not “legally blind,” according to the eye chart, I did not qualify.  Rehabilitation Services does not work with people who are living with sight loss, so they did not want to work with me either.  A compromise was made.  The Commission for the Blind would tell Rehabilitation Services what I needed, and Rehabilitation Services would purchase the items out of their budget and get me signed up for other resources that I needed such as access to the National Library Services for the Blind and Physically Handicapped and RFB&D (Recordings for the Blind and Dyslexics) that has since changed its name to Learning Ally.  I did not receive any training.  When I almost fell down a flight of stairs because the sight loss below central vision made curbs and stairways treacherous, I asked for cane and mobility training.  That was denied until I told the Commission that if I sprained my ankle, I would not be denied a crutch because I had not broken the leg.  Cane and mobility training soon followed.  With the tools I was given, I went on to earn two masters degrees and began work on a Ph.D. before another eye disease, cataracts, slowly covered the central vision in both eyes.  After almost thirty years of living with impaired vision, I was “legally blind” according to the eye chart and could receive services from the Commission for the Blind and spend one month at the training center.  At that time, it did not have a computer training facility or access to full-time Braille classes.  I only had four hours of Braille lessons during one month of training.  I was expected to contact the Hadley School for the blind for distance learning classes in Braille.  In 2005, when the State of Michigan experienced severe budget problems, it closed the cases of all people who were blind and unemployed as well as the Washtenaw County Library for the Blind and Physically Handicapped.  Fortunately, a group of public, special, and school librarians had already formed a committee to bring services for people with disabilities into public libraries, and the Washtenaw County Library for the Blind and Physically Handicapped was moved into the main branch of the Ann Arbor District Library.

Anyone who assumes that people who are blind always have a rehabilitation counselor are mistaken.  Services are different in every state as are the quality of the services.  I believe that more people who are living with partial sight would seek and accept services and aids that are available to them if the word “blind” that they interpret as total blindness was removed.  This is not going to happen.  The Perkins School for the Blind, the American Printing House for the Blind, The American Council of the Blind, the National Federation of the Blind, and the Hadley school for the Blind are not going to change their names, but they are all welcoming to people who are living in that gray area between sight and total blindness.  They always have been welcoming.  That is why both Helen Keller and her teacher, Anne Sullivan, attended the Perkins School for the Blind.

Shakespeare asked, “What’s in a name?”  According to him, a rose by any other name would still smell just as sweet; but when it comes to rehabilitation, Shakespeare’s theory stinks.  Most patients, and some of their health care professionals, do not have a clue what vision impaired, sight impaired, low vision, legal blindness, and other terms that are bounced around mean.  The name game now includes words for their diseases too.  Are they diseases, disorders, losses, problems?  You’ll find all of these words used by authors writing books on the subject.  There seems to be one agreement.  A Low vision Support Group will welcome members no matter how low their vision goes and their family members, friends, and drivers too.  Unfortunately, since most eye diseases are age related, low vision support groups often meet on weekdays during business hours when employed or job seeking participants cannot attend.  For this reason, people diagnosed with potentially blinding diseases between the ages of 18 and 62 can get lost in a dysfunctional system, just as I did for many years.  Much of my graduate work that led to this blog was devoted to building a bridge over that gray area between sight and total blindness.

How do you play The Name game?  Be realistic.  Be creative.  Be a problem solver.  Be tenacious.  Be proactive.  Be an advocate.  Be involved with your blind and vision impaired peers locally and nationally.  You will make loving what is left much easier, get the help you need, and learn about the latest gadgets as they become available.

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