Future Reflections Winter 2014 IDEAS AND PERSPECTIVES
by Carlton Anne Cook Walker
Reprinted from Braille Monitor, Volume 56, No. 11, December 2013
From the Editor: Carlton Anne Cook Walker serves as president of the National Organization of Parents of Blind Children (NOPBC). She is a teacher of the visually impaired, an attorney, and the mother of a blind daughter, Anna Catherine. The following article is based on a speech she delivered last October at a luncheon for parents of blind children in Iowa.
It is indeed an honor to be in this Hawkeye State that holds so much history of the blind, and to be with individuals like you who represent the future. I serve as the president of the National Organization of Parents of Blind Children. This is my fifth year working as an itinerant teacher of blind students in south central Pennsylvania, and I continue to operate my law practice on a part-time basis. But to explain better where I want to go, I need to let you know where I have been.
I am a native North Carolinian, so, if you ask me where I'm from, the answer is Raleigh, North Carolina. However, in 1995 I met an incredible gentleman. He was a widower and the father of two lovely children, Kenny and Stephanie. Despite the fact that he was also a Yankee, we got married, and I moved up to Pennsylvania, where we all now live.
In March of 2001 our family grew with the birth of Anna Catherine. She was a healthy, full-term baby, weighing eight pounds, twelve ounces--but health problems soon developed. Like many first-time mothers, I had heavily researched the benefits of breastfeeding. Unfortunately, Anna could not latch on well, and after our first hospitalization I ended up feeding her my milk from a bottle. This worked well for a couple of months--then she developed severe reflux.
Our next three hospitalizations ended with surgery to treat the reflux and the placement of a feeding tube. Again we muddled through, as a two-pump family--my breast pump and her feeding pump.
Just after Thanksgiving, when we returned from our first family vacation, Anna's lips started turning various shades of blue. Another two weeks in the hospital, and we came home with two oxygen tanks and an overnight monitor. We were told that this first Christmas with Anna Catherine might well be our last.
In February Anna started vomiting blood. We again rushed to the emergency room, but this time we went to a different hospital, Children's Hospital in Pittsburgh. Everything was different. In Pittsburgh Anna was not treated as a pulmonary case or a neurology case. Anna was a sick little girl who needed to get better. Anna Catherine was sicker than she had ever been before, but these doctors believed that she could and would improve. They learned that she could no longer tolerate any protein, so she could no longer have my milk. Instead she needed a very elemental formula, made in England, that contained only amino acids, which her body then would form into proteins.
I had to throw out my preconception of the superiority of breast milk. No matter how I changed my diet, I could no longer provide what Anna needed. I had to give up what I wanted in order to give my little girl what she needed to survive.
Anna's early health issues hampered the development of both her macula (used for central vision) and her retina (used for peripheral vision). Nevertheless, early educators steered us toward large print--after all, three-year-old Anna could read seventy-two-point font at four inches.
Through an improbable series of events, I found the National Federation of the Blind. We attended the first Beginnings and Blueprints conference in Baltimore in 2005, we attended the 2006 NFB convention in Dallas, and we fell in love. We realized that our new NFB family could provide Anna Catherine with the skills, tools, and mentoring that we, as her sighted parents, could not.
As I reflect on the first fifteen months of Anna's life, I am struck by the parallels between my journey and those of parents of blind children--especially blind children who have some functional vision. I had researched the benefits of breast milk, and I did everything in my power to ensure that Anna got it. Parents of children with low vision are bombarded with information about maximizing sight. Just as I did with breast milk, parents and professionals bend over backward to maximize the use of vision--even when the child is harmed in the process. I remember vividly how hard it was for me to give up nursing and move to formula--you can probably hear in my voice what an emotional decision it was. Thus, it should not surprise us that sighted parents and professionals cling steadfastly to their misconceptions about the superiority of vision in all circumstances. It takes time to change attitudes and transform belief systems, but our support and patience are vital. We know the utility of nonvisual techniques. Parents' minds will be changed when they witness the increased capabilities and independence of blind children who use these techniques more efficiently and effectively than vision-maximizing methods.
Anna Catherine is now a healthy twelve-year-old seventh grader. She describes herself as blind with some functional vision. She reads Braille and uses a long white cane for travel. In truth, she has several long canes, none of which is white. Each of her canes is decorated in different colors and with different patterns--a preteen girl needs to match her cane to her outfits, you know!
Anna has always been a "math girl." We had the pleasure of meeting the late Dr. Abraham Nemeth on several occasions at NFB conventions and at the Louis Braille Coin launch in 2009. We mourn his passing this week.
I truly shudder to think of where Anna would be had we not found the Federation. Anna would not be able to keep up with her studies if she were reading print, and she would be restricted to using mental math. Instead of walking home from school and walking to the grocery store (sometimes without my knowledge), she would be fearful of moving around independently. Thanks to the skills, tools, and mentoring of our Federation family, my Anna Catherine is a headstrong, math-loving, fashionista--just as she should be!
When your state NFB president, Mr. Michael Barber, invited me to come to Iowa, I was excited. I have never been here before, but I know my NFB history. I know that our past president, Dr. Kenneth Jernigan, molded many past and current Federation leaders, including our current president, Dr. Marc Maurer, here in Iowa. I was also excited to come to the home of Meredith Willson, the site of his beautiful love letter to his home state, The Music Man. This incredible musical is one of my favorites, and my family watches it often--in both live local performances and the movie versions.
Life being what it is, I soon had my own Music Man experience. I had the opportunity to lead two summer programs: one for deaf and blind students and one for blind students only. In both programs we had staff with and without experience in working with blind children. I explained that we needed to teach nonvisual skills under sleepshades, and that we, as sighted individuals, must practice those skills under sleepshades before we attempt to teach them. My viewpoint was a revelation to the other staff members. Some of the sighted people with experience teaching blind children had never used sleepshades before--either for themselves or for their students. Some argued that sleepshades are not really necessary; they were convinced that one can learn and teach nonvisual skills while using vision.
This notion struck me as a modern-day implementation of the "Think System." In The Music Man, a traveling salesman, Professor Harold Hill, holds himself out as an expert in forming boys' bands. He sells townsfolk the instruments, instruction books, and uniforms, with promises of forming their young children into the River City Boys' Band to entertain the community at the upcoming Fourth of July celebration. Unfortunately, Professor Hill does not know how to teach or even play the band instruments he sells. He cannot even read music. Professor Hill does not let this stop him. He develops the Think System, a process by which the children do not touch their expensive instruments; instead, they "think" the music.
Isn't this very much like teaching nonvisual skills through the use of vision? Just as one cannot learn to play an instrument without touching the instrument, one cannot learn the efficient and effective use of nonvisual skills while employing vision. Just as Professor Hill hid his incompetence in music instruction by teaching his Think System, too many teachers of blind students avoid instruction in blindness skills such as Braille reading and cane travel by substituting instruction in techniques that maximize vision but do not maximize students' performance and independence. Just as Professor Hill's ineffective methods failed to produce competent musicians, overreliance on vision in the instruction of blind students fails to produce competent or confident blind adults.
We know the risks of overreliance on vision. While I do not suggest that we tar and feather vision-centric instructors, I do believe that we, as Federationists, can help them improve. We can educate parents and professionals about the increased functionality that nonvisual skills provide. We can mentor blind adults and children and provide positive blind role models in their lives. We can gently but firmly insist on teaching nonvisual skills nonvisually. We can, and we must.
Let us join together to transform the Think System into the Do System. Just as Professor Hill abandoned his flawed plan, we can help parents, professionals, and blind adults realize the shortcomings of a vision-maximization approach. We must help individuals maximize efficiency, maximize effectiveness, and maximize independence. And together we will!