Future Reflections          Cane Travel and Independence

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Big Brother has a Cane; Little Sister Wants One, Too

by Carrie Gilmer

 

Maya understands blindness and Jordan’s use of the white cane in a way that only an adoring little sister can. Here she joins Jordan as he walks the family dog, and carries her own makeshift cane. When my daughter Maya was three years old she wanted one thing more than anything else--a white cane of her own. There was only one problem: she wasn’t blind. But her older brother Jordan was, and she wanted to be just like him.

My husband and I noticed that there was something wrong with Jordan’s vision when he was four and at age five he was diagnosed with cone-rod dystrophy. Then they told us that he was legally blind. But we didn’t find out how normal a blind kid could be until Jordan was eight and we discovered the National Federation of the Blind (NFB). Jordan’s older siblings, Joe and Kate were on the same learning curve of shock, grief, and acceptance that Phillip, my husband, and I experienced. Maya, however, was just one month shy of being two years old when Jordan and I attended our first NFB convention. At that convention our attitudes changed from mere acceptance to really going forward; full dreams ahead.

During Maya’s second year we had regular contact with many blind adults at local NFB meetings, and she celebrated her third birthday with all the buddies (blind kids) at the Buddy Camp Jordan was attending for the first time. In her early years, when she was forming her understanding of the world, there were blind people and sighted people, and to her there wasn’t an overall discernable difference between them. Mainly the difference was that blind people got to have white canes and read Braille, and blind kids got to go to a fun-filled camp. She wanted those things, too.

When she was three she began to pick up sticks in the yard and use them like a cane. Then she began to ask for a cane of her own. I didn’t think that as a sighted child she should have one. I also didn’t want her to think of Jordan’s cane as a toy, so I told her only blind kids got real canes. Of course, this only made her want one even more. She began to insist on taking her stick with her whenever we went out. But often the stick was too short or had little branches sticking out of it and we were in a rush to get out the door so mostly we told her, “No, you can’t take your stick.” But if Maya is anything, she is persistent, and she wanted a cane.

For nearly two years we went through lots of sticks. But they were brown, not white, often crooked, and even though many made it to the grocery store and back, they broke easily. Then, during the summer she turned five, a sort of miracle happened. We had gone to the Mississippi river (it is much cleaner up in Minnesota by the source) to spend the day with my father on his boat. As usual we had day-camped on a sandy shore. Suddenly I heard Maya yelling, “Mom! I found my cane! I found my cane!” Sure enough, Maya had found a perfectly straight stick; it was cane width and strength, of correct length, bleached white, and smoothed by the river. I could never again bring myself to tell her “No.”

Maya was growing up with a blind older brother who was just like any other older brother. He read her stories; he met her at the bus stop when I couldn’t; he made her snacks; he took her to the park, played with her, and made sure she was safe; he had cool stuff that she liked to borrow (or get into); he could reach things she could not; he got to do things she wasn’t old enough to do; and he was there to practice debating skills with her. She tried to discover what the blindness part meant by wearing sleepshades or closing her eyes and exploring with her own senses the alternative techniques Jordan used daily. To this day Maya’s attitude about blindness is matter-of-fact in a much deeper way than that of his older siblings.

Last year the Minnesota Parents of Blind Children partnered with Qwest Corporation volunteers to sponsor a beeper Easter Egg Hunt. Siblings were welcomed and had a chance to wear a colorful bandana over their eyes and use a white cane. A ten-year-old boy, Austyn, came with his sighted three-year-old sister Bayleigh. I had a cane just the right size for Bayleigh, and she was not afraid to put on the bandana. As I watched her I thought of Maya and the difference it made to let her grow up learning about her brother and blindness at least in part through imitation.

Austyn had a folding cane that he had obviously outgrown. I asked him if he would like to try a longer NFB straight cane with a cool metal tip. He whooped and hollered and took off down the sidewalk. He acted as though he had traded an old jalopy for a sleek new Corvette. And in my opinion he had. His excitement was cemented when I told him he could keep the cane when the hunt was over. I also asked Bayleigh if she would like to keep her cane. She said yes. Her mother and grandmother were a little hesitant--perhaps concerned that a blind child needed that particular cane--and questioned (like I had done with Maya) whether a sighted child should have a cane. But I told them it could be a good way for Bayleigh to discover what it means for her brother to use a cane, and explained how Maya had learned about her older brother this way.

Brenda Johnson, Bayleigh and Austyn’s mother, recently told me how it is going for Bayleigh and Austyn and their canes. Here’s what she said:

“Bayleigh has not separated from it since she got it. She has learned how to make rainbows (making a proper arc), and often reminds Austyn how to use his cane appropriately. One day in April, Bayleigh went to the grocery store with her Nana. Of course she needed to take her cane. As she walked through the store, she got a lot of looks from other shoppers and comments about how well she got along. When it was time to check out, the clerk commented about how well she got along, especially when she ran to the Hannah Montana poster display. Of course, grandma needed to explain that she really wasn't blind but was imitating her older brother. Bayleigh now has taken to wearing her Hannah Montana sleepshades when she goes out with her cane.”

Maybe Maya (or Bayleigh) will decide to become a cane travel instructor when she grows up. Wouldn’t that be awesome? As parents of blind children we cannot choose “if” our child will be blind, but we can definitely choose to model for them “how” to live with it through our actions and attitudes. We can also teach those in our families and who are in the lives of our child what blindness means, and what it doesn’t, through that choice of “how.”

Carrie Gilmer is president of the Minnesota Parents of Blind Children and secretary of the National Organization of Parents of Blind Children. She and her family live in Minneapolis, Minnesota.

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