Monday, January 19, 2015

Conclusions



 I started writing this blog over a year ago.  I am not an expert on the subject of vision loss or disorders, but some people thought my 45 years of living with both with a positive attitude was worth sharing.  I really don’t have more to write except to say that anyone who lives with a chronic disease or disability has three options:  to be objective, to be objectified, or to be an object.

I was taught to be objective.  That is a good approach to take AFTER the first, instinctive responses to a negative diagnosis illicit normal, seemingly irrational feelings of fear.  These feelings are part of the grieving that comes with any loss.  Care must be taken, however, not to become so objective that you allow yourself to become objectified or an object.  I am guilty of doing both; therefore, what follows is written, like this blog, for people living with chronic illnesses and disabilities and not for professionals who work for or care for them.

There is a very special kitten in my life that has needed some medical procedures.  His instincts and experiences have taught him not to trust or warm up to veterinarians.  I have the same instincts and experiences.  I do not trust or warm up to medical and health care professionals unless they earn it.  Kittens don't get to read books like "The Gift of Fear" and "Safe without Sight” and are not expected to behave or think rationally, but we humans are--and we have to because there are people who try to make us believe that our instinctual fears are irrational.  If they were, we would not have been made to blink every time something comes near our eyes or back away when something gets too close. 

When a health care professional, family member or friend says things that are or seem to be unkind, it is often because they are grieving along with us.  While we might be in the shock stage, they might have moved ahead to the anger stage.  If you stick around, you will probably hear apologies.  If, after a reasonable length of time, however, you don't believe that everyone concerned has come to an accepting resolution , you will need to consider your options that include counseling or separating yourself from others until they treat you with respect.

As you progress through your medical procedures and rehabilitation if needed, you will work with a variety of professionals from psychologists to social workers.  Some specialize in occupational therapy, low vision or other skills, local and government resources, or counseling.  You might need one or all of these services.  If these people look at you and see that your glass is half full, you are in great shape.  If they look at the part that is half empty, beware.  These are the people who will either throw a pity party in your honor or explain to you in great detail why you are entitled to one.  Run!

I find that these downers either give you or write books that start with the word, "coping."  While researching for this post, I found two new titles in this genre, Coping with Vision Disorders (2001) and Coping with Vision Loss (2011).  Although I am close to breaking out in a rash when I even hear the word, "coping," my mind opened a crack as I tried to read these books.  It didn't take long to understand why my reaction to the word, "coping," and books whose title begins with that word is so strong.  It becomes clear from page one that some authors either do not intend for a patient to read the books or they are insensitive as they objectify the people about whom they write.

By giving one case study or excerpt from a diary of a grieving person, some writers project this information on all people with a similar diagnosis or any condition that falls under the same category such as eye diseases.  Such writing stereotypes and dehumanizes.  These books might tell you more than you ever wanted to know about your particular disease including the history of how people functioned with your condition since the beginning of time.  Sometimes the messages in these books are loud and clear:  Count your blessings and stop complaining.  Most of the time, they are more subtle.  The expectations are, however, very low:  Coping, or treading water for the rest of your life, rather than living it.  Even books with titles like Living with Vision Problems include sections on coping: therefore, read these books with caution.

I read Chapter Six, "Emotional Issues if You Have a Severe Vision Disorder," in Coping with Vision Disorders.  It was so refreshing seeing this title in the Table of Contents that I went right to it and then went back to read the book from the beginning.  There is so much in this book that I almost wanted to reread it.  BUT--the author decided to mention the titles of several movies with main characters that have lost sight throughout the book.  This is where the stereotyping, dehumanizing, and objectifying reared its ugly head.  Although no comments were made about these movies by the author, upon consideration I found they do not reflect the diversity among the population referred to as "blind.  In all of the movies except one, the main characters became blind because of accidents rather than from diseases of the eye.  None of them were blind from birth.  None were successful.  All were verbally abused or neglected by a family member, a friend, or a neighbor.  Maltreatment, in the majority of the stories, was justified by some personal flaw in the newly blind character such as promiscuity or alcoholism.  The only thing that I found uplifting in these well known movies is their outstanding soundtracks or theme songs.

 When books on coping are added to the views of misguided teachers, career counselors, and advocates, a person who has been objective and then objectified can slip into the nonstatus of being an object.  An object is a person whose real gifts, talents, and passions are ignored.  Objects are expected to put their dreams on a shelf and become rehabilitation teachers, social workers, advocates, or politicians who represent other people with chronic illnesses or disabilities.  This is a dehumanizing and almost out-of-body experience where you are watching your life rather than living it.  If you are wondering if you are saying "the right thing," doing “the right thing," wearing "the right thing,“ and looking for the camera as soon as you walk into a meeting, you have become an object.

Here is a light verse poem that I wrote after I began living with glaucoma:

Sociolo-gist
By Susan Bourrie

Educator.
Complicator.
Life was simple.
Now I hate her.
I was happy,
Filled with glee.
Til you said
I shouldn’t be.

For many years, the only books written by or about the blind or vision impaired or people with other chronic and disabling conditions had subjects who were anything but ordinary.  These people climbed the highest mountains, were musical superstars, or influenced world leaders.  These books rarely showed how these people achieved success other than through hard work, determination, and a strong support system.  I needed more information than these books were giving me, so I started searching for books about ordinary people who were diagnosed and trained before they became adults.  I hoped to find out what I have missed and was not getting from commissions, bureaus, and rehabilitation services.  Eventually, I located books written by men and women who had attended residential schools for the blind.  The major things that I found that I lacked were access to Braille and Talking Books, travel skills, and socialization with other people who were experiencing vision losses.  Many people who were diagnosed and educated while they were young seem more confident, trusting, and successful compared with people who experience vision losses later in life.  These people also seem to have superior networking skills that include computers, mobile devices, and online social media.  They are eager to try new things, not afraid to fail at new ventures, and trust themselves and others.  Their maturity and sophistication seems to come from their inner character and strength that they developed as youth and that they are eager to share with people who loss vision later in life.   Some of these people are writing for an online publication, The Consumer Vision Magazine, or appearing on a new call-in chat, the Branco Broadcast.  Participants include university professors, career coaches, and entrepreneurs with equal representation among men and women.  For more information, contact Robert T. Branco, author of My Home Away from Home and As I See It at branco182@verizon.net.

Loving what we have left means taking care of what we have left.  It means being who we are rather than who some objectifier says we should be.  It means being all that we can be and combining our work and our advocacy according to our own timetable.  I'll drink to that even if my glass is only half full.

Acknowledgements:  My appreciation goes out to those already mentioned throughout this blog as well as my family and friends who have loved and guided me.  Special thanks go out to Josie Parker and her staff at the Ann Arbor District Library and the Washtenaw County Library for the Blind and Physically Handicapped who provided technical support, Suzanne M. Wilson, Ph.D. who gave me wise educational and career advice and stood by me when I didn’t always follow it, Theresa Hofer and Sister Ann Shields from Ave Maria Radio who provided spiritual guidance, and Joyce Meyer who writes books that are as inspiring as her television broadcasts.  Most of all, I thank my blind and vision impaired students and friends who have given me hands-on help with everything from Braille to computer program challenges.  Your delightful enthusiasm made learning new ways of doing things a lot of fun.     

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.