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:
By Susan Bourrie
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 firstname.lastname@example.org.
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.