American Action Fund for Blind Children and Adults
Future Reflections
       Fall 2016       VIEWPOINTS

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What Does She See?

by Aaron Rupp

Marley Rupp climbs a rock face holding her cane.From the Editor: Parents of blind children often have to deal with the questions and doubts of strangers, relatives, and friends regarding their child's abilities. In this article Aaron Rupp of Nevada reflects on the need to set fear aside so that children can reach their full potential.

Marley, my daughter, is six (and a half, almost seven, she'll tell you), and she has an eye condition called optic nerve atrophy.

"So what can she see? Is she totally blind . . . or just legally blind?"

That's how the conversation starts. The questions are usually followed by my attempt to explain what a visual acuity of 20/1,600 actually means. I watch the jaws drop when my listeners realize the implications of poor depth perception combined with loss of fine detail. I watch them shake their heads and hear them murmur, "Oh, that poor girl! It's amazing that she's doing so well!" I see them look over at their own children and count their blessings. Then they look at my daughter with pity and ask me if I'm scared. If only these people could watch when Marley is running, reading Braille, and just being a normal, amazing child!

Just to get it out there, so that it is crystal clear as you read the remainder of this article--no, I am not scared one bit for Marley's safety or her ability to live a full life. But I fear the people around her, with their ignorance and their fear of the taboo of "low vision." I fear how they will try to enforce their low expectations and limitations onto my little girl's life trajectory.

Young children are at the stage in their lives when they are defining their self-worth, setting up the parameters of their abilities, and learning how their self-concepts interface with reality. I know blind people who dominate triathlons, own businesses, hang with Obama, and have climbed Mount Everest. I also know blind people who spend their lives sitting around on the couch feeling sorry for themselves, people who wait on handouts just to get by. Funny thing, I know plenty of sighted folks on both ends of that spectrum as well, so what gives?

Self-Esteem and Fear

To steal a few lines from Wikipedia, "Self-esteem reflects a person's overall subjective emotional evaluation of his or her own self-worth. It is a judgment of oneself as well as an attitude toward the self. Self-esteem encompasses beliefs about oneself, (for example, "I am competent," "I am worthy,") as well as emotional states, such as triumph, despair, pride, and shame . . . It is an influential predictor of certain outcomes, such as academic achievement, happiness, satisfaction in marriage and relationships, and criminal behavior. Self-esteem can apply specifically to a particular dimension (for example, "I believe I am a good writer and feel happy about that,") or a global extent (for example, "I believe I am a bad person and feel bad about myself in general.") Psychologists usually regard self-esteem as an enduring personality characteristic."

As a parent, I feel that one of my top priorities is to encourage a lifestyle that supports optimum health. Another is to provide a nonbiased, open environment that allows my kids to develop into the persons they are, not into the persons I think they should be, based on what I may perceive as their limitations. If I try to play it safe in life, I will let fear take the controls; fear steers us away from all the marvelous things that can be and sets the bar dictated by limitation. Fear-based definitions can begin in infancy and build up, layer by layer, until they become self-identification.

The Padded Cell

I love an NPR podcast I heard about a blind boy who refused not to ride a bike. Using echo location skills by making various clicking sounds, he learned to create a mental image of the world around him. He could go to the top of the hill in his neighborhood and "cherry bomb" down the road as fast as his bike would take him. People would come out of their houses and scold his mother, demanding, "How can you let him do that?" Obviously they asked this question out of fear of the possibilities. Now an adult, the cyclist explains, "Hitting a light pole is a drag, but never riding and avoiding the possibility of hitting one, that would be a tragedy." To me that is what it is all about. What quality of life would somebody have, living in a padded room?

When we put our blind kids into figurative padded rooms, we delay life lessons that will hit much harder later on. When we let limitations dictate their personal self-worth, we completely alter the trajectory of their lives until our misconceptions and fears become their reality.

The fear of the unknown has deep roots in the human psyche, and blindness is unknown and scary to most people. Unless a person is firmly rooted in self-worth and believes that he or she can navigate through any of life's storms, fear is likely to lead decisions in any encounter with someone who is blind. By rushing in and grabbing the blind child at the curb, by whisking her off when her peers ask about differences, by navigating for her and keeping her cooped up, we rob her of essential life experiences.

I've seen school officials hold my daughter's hand and refuse to let her participate in the annual class fundraising run while her peers did laps in front of her. They were afraid she might run into the cones. I see people who love her hold her hand to guide her around a playground, speak loudly to her as though she spoke a different language, and try to do everything for her around the house, all out of misguided concern, because they see her as helpless. This behavior stems from their expectations of what blind people should be, based upon their own fears and their sense of what their self-worth would be if the roles were swapped.

Putting Fear Aside

When we are out together, sometimes all I can do is cringe as Marley runs (and I mean runs! this girl can smash 5Ks and outruns most of her class) straight down the sidewalk toward a pole or sign. Literally at the last second she catches it with her cane, twists right by it in stride, and keeps on without slowing down. We went to the Grand Canyon by her request. She sprinted up to the edge, then felt it with her cane, and silently gazed out upon the abyss. It was all I could do to keep from grabbing her and backing her up ten feet.

My blood boiled when I watched a classmate take Marley's cane from her and begin swinging it around before they got called into school. Then I saw her assert herself, take her cane back, and show the little boy what it's used for. She even gave him a quick impromptu lesson on cane travel. In moments like these she becomes my teacher, teaching me to trust in her natural human talents, innate in her just as they are in other kids. She exposes my limited perceptions, keeps me humble, and helps me shed the limitations I hold onto for myself.

As I look to the future, I wonder where those limited perceptions will pop up again. I can't imagine taking Marley up to Bridge Mountain, an eight-hour death hike followed by rock climbing with extreme exposure and no safety nets. But with a lifetime of lessons and experiences, I had the self-confidence to traverse there myself. Perhaps that adventure awaits her some day, too.

The old motto of the NFB asserts that, with the proper training, technology, and mindset, blindness can be reduced to a mere inconvenience. I especially like the new motto, "Live the life you want." It doesn't say, "Live an okay life, given your circumstances." It declares, LIVE THE LIFE YOU WANT! That is what our children deserve. We are bound by right action to do everything in our power to help provide that, even if it involves redefining the possibilities and rethinking who we are.

I have learned to expect nothing less from my blind daughter than I do from my sighted son. Of course they each face different obstacles, but the thing is, everybody is amazing. Every human is gifted with more than we can begin to understand. Each is completely capable of bringing the seeds of those gifts to flower, if we just get out of the way and help put fears aside. The absence of fear is not the elimination of negative possibilities. It is a result of trust and confidence in the self to bring all possibilities within reach.

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