Sunday, August 17, 2008

Are you blind enough to use a cane?

Below is an article I’ve taken (and hopefully no one will mind) from the latest issue of Future Reflections. Future Reflections is a magazine for parents of blind and visually impaired children published by the parents division of the National Federation of the Blind.

Because I’m a person with albinism that uses a cane (and the question comes up from time to time in albinism related groups) I get a lot of questions. I thought this was a great article from a parents’ perspective about who could benefit from learning to use a cane.

Let me say that I’m certainly not an orientation and mobility instructor. I have little experience with childhood and using a cane as I didn’t start to use one until I left home at 18 to go to college. But, I can tell you why I choose to use one and who I think would benefit.

Not all people with albinism see the same. Even two people with albinism and roughly the same visual acuity might not see exactly the same way. And, add to the confusion all children are different. They develop at different rates. Some small children given a cane would likely promptly try to wrap it around the head of a sibling. (The kids I worked with at Camp Fire often had cane “sword fights” which we tried to discourage.) Others, however, would handle it just fine. And then there’s the issue of choice. Can you make an informed choice if you’ve never given something a fair try? Sometimes kids need positive exposure to something, even if in the end it turns out not to be the best choice for them.

The thing about kids with albinism is that even those of us on the bottom end of the vision spectrum tend to have better usable vision than most of the blind/visually impaired community. As a result, we often aren’t offered things because everyone thinks we’re doing so well “for a blind kid” as the mother in this story points out.

I was never offered a cane until I was 16, and I put my orientation and mobility teacher through hell. I highly resented the suggestion that I might need a cane. Canes were for blind people, and I considered being called blind at that time an insult. Why wouldn’t I? All my life family and professionals (as it was the thinking of the time, not because they were mean people) would say things like, “You don’t want to look blind.” They, and I, didn’t have a high opinion of the abilities of blind people so of course I felt that way. There was certainly no pride in being blind.

The problem was I faced a scary dilemma. My mom would have to stay in Germany where we lived to earn a living. This meant that if I wanted to go to college, I was going to have to return to the United States on my own and get settled into college life completely independently. There would be no going home on weekends.

I was scared to death. I knew I needed mobility help. I just didn’t think the cane was it – it seemed like overkill.

Thus, when the teacher left (she only came a few times a year – another problem) I never used the cane. My mom wasn’t wild about it either, so she never made me use it. Its primary function, as far as I was concerned, was to serve as a microphone when I sang in the mirror. It was great for that!

One of the problems in my cane instruction (and this might not be the way to go with small children – I really don’t know) is that I wasn’t doing anything differently. I was waving this stick in front of me, but I didn’t trust it. I didn’t know how to interpret what it was telling me really. I still focused on the ground in front of me.

I saw most of Europe as a kid, and spent most of the time looking at the sidewalk for the next uneven patch of pavement.

As the time drew closer to leave home my senior year, I was so scared! I was terrified!

I applied for a scholarship from the NFB, and one of the requirements for the scholarship is that you have to be interviewed by a state president. Living in Germany I didn’t have one, but my orientation and mobility teacher had taught at the Louisiana School for the Blind. She knew Joanne Wilson, who was the NFB president of Louisiana at the time. She was also the director of the Louisiana Center for the Blind, a rehabilitation program for blind adults.

At the end of the interview she offered to have me come to the center in Louisiana for the summer for additional mobility training (and all the other things the center offered). Feeling as though I wasn’t ready to take on the world alone, I took her up on the offer.

The rules at the center require everyone to use a cane – no exceptions. It also required those of us with some vision to use sleep shades during the day so that we learned the skills as though we were totally blind. It was a unique approach at the time. The theory was if you learned to do things as efficiently as a sighted person with no vision, then whatever vision you had was that much extra, instead of that much less.

So, I used my cane. I soon discovered that with the sleep shades I was really learning to use it and not just wave it in front of me. Within two weeks I was at an NFB national convention exploring the French Quarter and the city with my peers instead of with “sighted adults.”

My skills from time to time get sloppy because I do have some vision. Sometimes I make myself do a “refresher” just to try to keep them sharp. I’ve gone from being afraid to go to new places and looking at the pavement all the time, to traveling the world by myself with no fear. I had no idea how much energy I was spending trying to get around without it.

It’s so sad to me when I’m talking to an HPS’er about going to the NIH, and they’re afraid of the travel. They don’t feel they’re “blind enough for a cane” but they’re afraid of going to a new place alone. They’re afraid of crossing certain streets or going certain places. It seems sad to me because it doesn’t have to be that way.

Sure, using a cane puts up a big red flag saying, “Hey, I can’t see.” That has its good points and its bad points. It’s good for traffic or bicycles that need to know you might not see them. It’s bad when you encounter some jerk who thinks he knows more about low vision as an outsider than you do living it every day and says, “You don’t need a’re not blind….” People really are amazing.

So, do you need a cane? Or does your kid? It’s not a black and white thing for many people with albinism, many of whom can hover right around that legal blindness mark or slightly above. My best advice is to be open to the idea, especially if you or your child has a lot of anxiety about certain situations. For me those are parking lots, stretches of sidewalk with a lot of tree shade so there are a lot of light and dark places, sunrise and sunset, curbs or steps that are one or two steps instead of a whole flight and places at night where the streetlights cause the lighting to shift rapidly.

Just a thought to consider….but you’ll have to make your own decision.

Blind Enough for a Cane?
by Carrie Gilmer
Until Jordan was eight years old he walked bent over, not unlike my ninety-year-old grandmother whose spine was severely humped from osteoporosis. Jordan also walked with a slow, halting gait. All of his energy was focused on the ground in front of him. He was nervous and scared to cross the street by himself. He constantly reached for my hand when we were out in public. He was especially nervous in parking lots. I was becoming more and more concerned; this wasn’t what my other children did when they were nine.

At elementary school he could find the office, follow the line to the lunchroom and carry his own tray to the table, and he could follow the line to the bus. He could also follow the line to the playground, but once there he often stayed in one spot and played alone. Everyone at school thought he was doing really well. His orientation and mobility (O&M) instructor said he was doing great. What took us some time to realize was that they all thought he did really well--for a blind kid. Part of me wanted to rebel against these low expectations, but part of me wanted to be proud that he did so well--for a blind kid.

My husband and I didn't know any independent blind people. We had never seen anyone use a cane. No one had ever mentioned to us that Jordan should use one. I assumed that he wasn't given a cane because he wasn't blind enough. But here we were, faced with this fact: Jordan might be at the top of the heap of blind kids for independent mobility, but he was at the bottom of the heap of sighted kids. This meant that in his daily life he was always at the bottom because he was the only blind kid around.

In the spring of second grade, my concern about him being at the bottom of the heap day in and day out compelled me to go to the local NFB chapter. Judy Sanders, a totally blind woman from birth, volunteered to come to meet us and visit his school. I picked her up at the nearest bus station to Jordan's school. She traveled independently using a long white cane. She had never been to our neighborhood before, but it was no problem for her to find her way from the big city to the suburbs, from the bus to my car, and from my car through the parking lot into the school. I was very excited to see such normalcy in my first meeting with a real blind person. I thought she was definitely at the top of the blind heap, and I also thought she mixed in normally with the sighted heap; she traveled equally with me, anyway. I thought maybe she was allowed to have a cane because she was totally blind.
As we left the school, Judy told me about a national convention of blind people coming up that summer in Atlanta. She said there would be thousands of blind people there. She said it would take me years to learn what I could learn at this convention in one week. We decided to go, Jordan and I. When we got there, one of the things we found out was that not only could Jordan have a cane, he should have one. Joe Cutter (a nationally known expert in children's travel) told him that the cane is like a third eye on the ground. Jordan got his first cane and almost immediately his posture completely changed. He walked erect; chin up. He didn't grab for me on the stairs or at the curb as we walked around downtown Atlanta. I realized then that his spirit had been as bent over as his posture had been. I had a good cry.

After we got home from Atlanta I made him take the cane regularly whenever he went out. But I noticed that it was like he now had a big neon sign that said BLIND KID. He was a curiosity; he really stood out. I'm sure most of these people had never seen a blind kid with a cane before; I never had. I had the strange feeling of being glad for his blindness; glad that is, that he couldn't see all the people staring at him.
At first I wasn’t totally convinced that it was right to ask him to take the cane everywhere.

He almost never tripped or fell but, on the other hand, he always walked cautiously and never ran. I just couldn’t comprehend how his O&M instructor, the teacher of blind students, had never even mentioned the cane as a possibility for Jordan. I told the president of the NFB of Minnesota, herself a blind person who had grown up with partial sight, that every time I told Jordan to take his cane I had the weird feeling I was parking in a handicap zone without the tag.

But everything I had seen and heard and felt at convention told my gut that these blind people were totally right. They knew what they were talking about. They lived what they were talking about. I decided to trust them and do exactly what they said, and I mean exactly. Today I thank God over and over that I did.

At first, Jordan would forget the cane; he wasn’t used to thinking about it, but I would remind him. His posture continued to improve and he seemed less anxious overall about everything, not just travel. But he got very little instruction in how to use the cane from our school. The teachers let him carry the cane, but they still wanted him to use his vision primarily for travel. His technique seemed similar to what I saw other blind people do, so I just let him use the cane and explore with it. He soon discovered he could use it to tell the depth of snow and puddles and the height of ceilings among other things.

Before too long though it became clear that Jordan didn’t grasp the cane’s full potential; he needed some good training. Sometimes I caught him bending over, looking at the near ground while holding the cane up or out instead of on the ground. So, we sent him to the nearby Buddy Program; a camp for blind children run by BLIND, Inc., an NFB training center that was located not far from us in Minneapolis. There he learned how to travel with a cane under blindfolds, or sleepshades. He didn't completely comprehend what the cane could do for him or fully trust it until he experienced this sleepshade training. Once he understood what the cane could do and trusted it, he discovered that he could walk without fear and use his vision to look around at the buildings, trees, sky, or the person next to him. He learned how to rely on the cane for information about what was just in front of him, and to use his vision for gaining other information—usually just pleasurable—because now he could look up and out and around.

Since then, Jordan has gone all over town and all over the United States with cane in hand. He rarely walks beside me anymore, which is the norm for a teenager. He walks near me now only when it is normal to do so, like at the state fair, in a crowded museum, or at a holiday-packed mall. Usually, however, we have to yell at him to wait for the rest of us.

Through the years we have also become used to public reaction to the cane. We have learned through our NFB friends how to handle it. Here’s some of the worst examples: Once, a mother literally yanked her two young children out of Jordan's path and screamed at them to watch out, "That kid is blind!" (I was tempted to call child protection to report her treatment of her own children). In a mall parking lot a man went on and on and on about this amazing blind person he had met once on a Scout trip. A couple of times store clerks have accused Jordan of pretending to be blind. Some people are overly solicitous and try to help without being asked. Some people dramatically, but silently, move away. Some act panicked and over-apologetic if they should bump into, or be touched on the foot by, the cane. It’s common for little kids to ask what it is. A few young children wonder where they too can get one of these cool white sticks. Kids are usually delightful. These are not uncommon experiences for the independent cane traveler. Because we witnessed and experienced these with him, we were able to discuss what had happened and use it as a learning opportunity for him to develop self-advocacy skills.

At times it seemed that it might be easier to just let him leave the cane at home. Easier for us, his parents, that is. But this wasn't about us. It wasn’t Jordan who should be ashamed or embarrassed in these public encounters. The NFB helped us realize that it is respectable to be blind. It was ignorance that led to disrespect and fear on the part of the public. Instead of hiding the cane or leaving it at home, we taught Jordan and others that the cane is a respectable tool of independence. I was consistent and firm. It was like needing a coat when the weather was cold or rainy: his blindness called for a cane, and it was as simple as that. Leaving it at home would have denied him practice and self-discovery, including learning how to handle those incidents with the public.

Through constant use, Jordan has come to be a confident and proficient cane traveler. Using the cane is as natural and normal and routine to him as brushing his teeth or wearing shoes. It has become so natural to him now that the only way he can articulate how it works for him is in these words, “It is an extension of my body.” He can problem-solve in new environments. He can nonchalantly explain its use to the general public (all ages). He handles people's awkwardness with humor and quickly puts them at ease. He feels comfortable with it, uncomfortable without it. He is fully integrated into the heap. (I no longer think of it as the sighted kid or the blind kid heap; it’s all one, now).

This year when Jordan brought his class pictures home I noticed that he held his white cane proudly across his chest in the picture. He had never done this before. When we had started down this road the one thing we were determined about was that we never wanted Jordan to be embarrassed about who he is. We had succeeded. I cried again--this time they were tears of joy.

Carrie Gilmer is the secretary of the NOPBC and president of the POBC of Minnesota. She and her family live in the Minneapolis metropolitan area.

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