Future Reflections Special Issue on Low Vision PARENTS' PERSPECTIVES
by Carrie Gilmer
Reprinted from Future Reflections, Volume 27, Number 2, Special Issue on Cane Travel and Independence
From the Editor: Carrie Gilmer works for the Equal Employment Opportunity Commission (EEOC) in Minneapolis. Her son, Jordan Richardson, graduated from the University of Minnesota in 2013 and currently serves with Reading Corps/AmeriCorps, working as a reading intervention tutor with two prekindergarten classes.
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 his age.
At his elementary school Jordan could find the office, follow the line to the lunchroom, and carry his own tray to the table. 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. It took us some time to realize 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 kid who was blind.
My husband and I didn't know any independent blind people. We had never seen anyone use a long white 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 Jordan's second grade year, 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 woman totally blind from birth, volunteered to meet us and visit Jordan's school. I picked her up at the nearest bus station. 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 thought she mixed in normally with the sighted heap as well. 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. I had a good cry.
After we got home from Atlanta, I made Jordan take the cane regularly whenever he went out. But I noticed that it was as though he now wore 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 Jordan's 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 Jordan to take the cane everywhere. Without the cane he almost never tripped or fell, but on the other hand, he always walked cautiously and never ran. I couldn't comprehend how his O&M instructor and 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 the handicapped 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. 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 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 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 are 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 the cane 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 them with Jordan, 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 let Jordan leave the cane at home. It might be 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 practice, 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 the cane and 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 photo. He had never done this before. When we 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.