Monday, June 15, 2015

Loving What Is Left and Loving Who Is Left



In a previous post, "Conclusions," that can be located in the compilation of posts from 2013-2014, I explained why I do not like the word, "coping," in the titles or content in books and articles about living with low vision or blindness because the writers tend to use the words, "coping" and "living," as if they were synonyms.  They aren't.  One writer who knows the difference and has the credentials to write about the subject is Alvin Roberts.  In his book, Coping with Blindness:  Personal Tales of Blindness Rehabilitation, this retired rehabilitation counselor and teacher from Illinois who served clients who were blind while living with the medical condition himself from 1950-1990, shares true stories that make the difference between "coping" and "living" abundantly clear.  The scenario that moved me the most was about a woman who lost her sight, learned independent and mobility skills, and became a proficient Braille reader.  All she wanted was a copy of The Bible  that she could read herself.  The day that her counselor delivered the enormous, nineteen volume book to her home, her husband, a farmer, came in from his fields and told the counselor that there was no room in the house for those volumes.  He not only made the counselor put the books back into his car, but he also closed his wife's case with the rehabilitation services organization.  As long as his wife had the independent living skills to cook his meals, do his laundry, and clean his house, SHE did not need anything else.  This woman was living with blindness but merely coping with her husband.

Low vision and blindness do not limit people living with these conditions as much as other people, politics, and prejudice do.  There are do-gooders who tell people who are living with disabilities what they should do or must do rather than ask them what they want to do.  There are policies created by politicians that guide unsuspecting and vulnerable people who are legally blind or living with disabilities into dependent welfare programs that promise an education, jobs, and independence that dry up when the economy is in trouble.  There are employers, especially in the area of education, who are interested in educating people with disabilities but not interested in hiring them.

When people are diagnosed with a potentially blinding disease or have lost sight,  they must learn not only to love what they have left but also to love who is left.  I was not taught this.  I had to learn it on my own.  When my glaucoma was diagnosed and I was told about the sight that I had started to lose before the disease was diagnosed and controlled, I was given a prescription that was relayed from my family doctor, a graduate of the Harvard Medical School through my mother, "Susan is just going to have to adjust."  It took decades before I decided that if I had to adjust, the rest of the world could adjust too.  On that day, I became an advocate.  I did not want other people to lose years and opportunities and skills as I had.  I became what is called a system's advocate.  I only learned recently when I attended an advocacy workshop at the Ann Arbor Center for Independent Living that there is another kind of advocacy, self advocacy.  We are being self advocates when we are not only loving what is left but also loving who we are and expecting the people who want to share our lives or work with us to respect our boundaries or get out of our way.  People living with disabilities in the 21st Century don’t just want to fit in; they want to belong.

Alvin Roberts wrote his book when the word, “enable,” was not considered synonymous with “codependence,” when asking people who are living with a disability if they needed help wasn’t considered an insult, and technology was not supposed to replace the need for human interaction.  Someone recently asked me why a person like me should need a sighted reader when everything is accessible with computers and scanners.  This person does not know that children’s picture books, one of my areas of expertise that I would like to keep updated, do not fit on scanners and often have illustrations that are not scanner friendly.  There are robot screeners on job websites that cannot be read easily either in print or audio options on a laptop computer.  All online forms are not 100% user friendly, and some must be filled out by a sighted reader online or in a print format.  This is just the tip of the iceberg.  I won’t even go into electronic phones, tablets, and instructions for items like talking watches, battery powered tooth brushes, and appliance knobs and buttons.

I was overjoyed when I started reading the California Handbook of Resources and Services for Persons Who Are Blind or Visually Impaired that includes sighted readers as essential parts of a rehabilitation plan.  This handbook as well as information online about the Braille Institute network of nonprofits found in many counties in California should be mandatory reading for anyone who wants to know about the best services, training, and recreational activities that could be made available nationally and globally.

Alvin Roberts wrote his true tales about living with blindness and coping with the rest of the world with a humorous and positive tone.  It is available in audio format from the National Library Service for the Blind and Physically Handicapped.  The print version can be located on loan if a local library does not have it on the shelves.  Two other excellent books recommended by one of my rehabilitation teachers are The Gifts of Imperfection and Daring Greatly by Brene Brown.  

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