Future Reflections Spring 1999, Vol. 18 No. 1

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From the Blind Kid Listserv

Canes for Low Vision Kids
Braille or Print? How About Both!
Why did God Make Blind People?

Editor’s Note: The Blind Kid list, or listserv, as Mr. Andrews explained in the preceding article, “You’ve Got Mail,” is sponsored by the National Organization of Parents of Blind Children, a division of the NFB. (The “You’ve Got Mail” article also describes how to subscribe to the Blind Kid listserv.) In the short time we have been on-line, Blind Kid list members have talked about an amazing variety of issues and topics concerning blindness and blind children. Some of the topics are pretty standard—canes and Braille, for example—but others, such as the discussion about God and blindness, have taken us into sensitive territory where people are often reluctant to tread. Standard or sensitive, it seemed to me that Future Reflections readers might enjoy “listening in” so to speak, on some of these conversations. So, here is a sampling of our listserv conversations:

Canes for Low Vision Kids

March 18, 1999

Holly and Karen:

I guess mobility is one of my biggest concerns. I am terrified that an overly confident Madeline will be in an unfamiliar environment (new school, field trip, friend’s house) and will fall down a flight of stairs, off the edge of a jungle gym, or down a ravine. Occasionally, she trips or bumps into something, but not any more often than the sighted kids her age (right now).

I’ve heard that if the lighting is a certain way, a flight of stairs can look like a ramp to a person with low vision. Yikes! Even if she does not use a cane, I suppose an O&M instructor can teach her how to interpret certain features, like curbs.

Thanks again. It is really helpful for me to hear how well your children are doing. (I saved the post about clickers, because having difficulty finding people in a crowd seems to be a common problem with low vision kids.)

Missy

March 24, 1999

Hi All,

Still weeding through mail! Good grief! Anyway, on the subject of travel and the low vision child, I am low vision myself (20/400) and so is my husband (20/200 corrected) and we both use a cane, I more than he.

As a child, I tripped up curbs, ran into things, missed steps, and, as Missy mentioned, misinterpreted a flight of stairs as a ramp once. Now, I agree that everyone bumps into something occasionally or trips up a curb. But is this because the sighted person doesn’t have the tools to make sure this doesn’t happen? Of course not. It usually happens because a person is carrying on a conversation, daydreaming, or just generally not paying attention. This happens to blind folks, too. But, if you have a child with low vision who is not using a cane, or does not carry one that he can use if he needs it, does he/she have all the tools he/she needs to make sure this embarrassment does not occur? No way!

Let’s imagine, for a moment, that you had never been introduced to shoes. You have only house slippers. Inside, you do great, only stubbing your toes occasionally, sometimes slipping on floors, but that’s okay, everyone does that. You decide one day to go for a walk. Walking along, you are forced to step into puddles, onto rocks, and, since your soles aren’t used to the pavement, you occasionally trip and fall. How much attention, do you think, would you be paying to your feet? I would bet quite a bit, trying with all your might to avoid anything that might hurt your feet or trip you up. How familiar does this scenario sound to you low vision folks? I used to live it every day before coming to the realization that a white cane could change all that, if I allowed it to.

How realistic is it to expect someone to walk a long distance in shoes made for the house? Not very. Neither is it realistic to expect the low vision child to travel without a mobility aid available, whether they need it at all times or not. I feel strongly that a low vision child should have a choice; they should be given the tools, taught to use them, and encouraged to use them when needed. I remember as a child wishing that there were something—anything—which would help me find stairs! I never really considered a cane because those were for “the blind kids”. My mom would say “Come on slowpoke, let’s go!” She didn’t know (because I wasn’t willing to admit it) that I was slow because I was frightened of what might happen if I missed that first step. I’m sure there was a time when I had no fear, as many of your kids do, but experience soon taught me to tread cautiously, watch my feet, and take it slow! And it was so unnecessary!

As I mentioned, I now use a cane. I won’t lie and say that I use it all the time, but it is always at my disposal if I need it. Sometimes I forget to carry it, and I always, without exception, regret it. I still have problems, because of long conditioning, using it around my family. This is something that I am getting better at because I know that my family understands, but it is still difficult for me.

If you put a cane in the hand of your low vision child, allow them to let go of you and walk alone, look at them with pride and encourage their independence, they will think nothing of using this wonderful tool of blindness when they need it. It breaks down the barriers, lets the public know, in no uncertain terms, why they have to look at things closely or need help finding the “X” on the signature line. It prevents them from tripping, falling, missing steps, or feeling lost in a crowd. I have fallen down steps, tripped up or down curbs, bumped into people, knocked over displays; but NEVER when carrying my cane.

Whatever you do, don’t allow your child to settle for living with embarrassment! Get over it, give them a cane, and be proud of their ability to walk alone with competence and confidence. Would you give your child only slippers to wear? Of course not! Yes, the cane is visible; a label that tells the world that your child is blind. But isn’t he? Would you rather have people view him as clumsy, slow, dependent? Because that’s what people think, and that’s how he feels when he makes a mistake. Telling a child with low vision that everyone makes mistakes does no good when that child knows he makes those mistakes because of his lack of vision. He blames himself; then walks on with his head down, watching out for the next obstacle.

By giving your low vision child a white cane, you give him the power to choose when and where to use it. He will soon learn when a cane is useful, and when it is simply not needed. With your guidance and support, he can learn what the obstacles are, to locate them, and to maneuver around them with grace. He will hold his head high, confident in his abilities. And when he trips, bumps into walls, or misses a step, it will truly be just a mistake, just like the little mistakes we all make every day; nothing more.

Tammy

Braille or Print? How About Both!

March 18, 1999

Our oldest son Ethan, age 7, uses both large print and Braille. He has optic nerve atrophy, nystagmus, and mild Cerebral Palsy. He is in a regular first grade classroom and is pulled out 4 days a week for 1 to 2 hours for Braille instruction. He started learning Braille in kindergarten. I wish now that I hadn’t been so resistant to him learning Braille earlier. My thought was that he could “see,” so we would just enlarge everything or use magnification aids. His visual acuity is 8/300, but you wouldn’t know it! He is a very visual learner. Slowly I realized that the Braille would actually give him more independence. He is doing great. I can proudly say that he is now reading Braille nearly as well as large print. He doesn’t seem to prefer one to the other at this point.

Overall, Ethan is a great kid! We are very proud of him!!!!

Holly

Why did God Make Blind People?

Editor’s Note: The following conversation on the listserv began with a mother sharing a poem her son wrote. The following thought-provoking discussion was also reprinted in the Illinois NFB newsletter, the Braille Examiner. Here is how the discussion began:

Hi everyone:

Today my son is reading a poem he wrote to the whole school over the intercom. It’s a project they all had to do in his Religion class. My son goes to a private Catholic high school. Hope you all like it… Oh, just to let you know, Pat was a victim of a felony crime when he was 8 years old that occurred at a “regular” school, wherein the defendant, who was an older child, pled guilty. Pat’s Dad has not seen him since he was 1 years old, Pat was born blind, and a young friend of ours died recently. PLEASE DO NOT GET ME WRONG, PAT IS VERY, VERY HAPPY, but he does not understand why all the terrible things happen in the world! This may help you understand why Pat wrote this poem.

Lord Help Me Understand
Lord help me understand
Why people hurt each other,
As I see no rhyme or reason
For hurting one another;
Lord help me understand
Why a Father leaves his son,
As I see no rhyme or reason
To why these fathers run.
Lord help me understand
Why there are deaf and blind,
As I see no rhyme or reason
To do that to mankind;
Lord help me understand
Why young, good people die,
As I see no rhyme or reason
To leave so many left to cry.
Lord, I know I ask a lot of thee,
But you see all these
Apply to me.

The poem initiated several letters in reply.The following response came from Bill, a blind attorney who lives and works in Springfield, Illinois. He is also a member of the Board of the National Federation of the Blind of Illinois. He wrote:

Hello again,

That is a wonderful question, one which I have seldom asked myself since childhood, but one which has been asked of me often—particularly by people seeking to affirm their skepticism. God is very important to me, and has become increasingly so as I think about the future welfare of my son in an increasingly cold and fragmented society. When people ask me why God would force me to live as a blind person, I make the following points which I consider an honest answer to the question:

Blindness certainly imposes its limits on what I can do, and maybe on aspects of what I experience. I am not one of those who say, “blindness is inconsequential.” However, other aspects of who I am, and who I am not, limit me; and I don’t even regard my blindness as the most severe of these limitations. I also observe this to be true for others who, although they can see and are otherwise in good health and have average-or-better intelligence, have lonely, monotonous, or conflict-filled lives because they can’t, or won’t, develop the interpersonal skills that make social living possible.

I think of the scriptures in which God’s prophets describe a time in which the lame will walk and the blind will see. Hasn’t that happened, through technology, to a large degree? While we in the NFB like to take credit for changing what it means to be blind, I believe equally that it was God’s hand that both created these possibilities and guided us to make those possibilities a reality. That kind of social progress is, by no means, inevitable. Observe some of the other social conditions which education ought to have been able to change, and observe that tolerance seems to be less in vogue than I recall it being even 20 years ago. It is for the victims of such injustice that I pray, and for societies continued willingness to let us participate even though we do many things differently.

While I don’t consider it miraculous that I was able to become an attorney and to support a wife and child despite my blindness, I know personally of others who have viewed my success as evidence they should push beyond their own fears, laziness, or self-imposed limitations. The scriptures are full of examples of not only blind people, but also widows, lepers, and others who could give up or get wrapped up in their own problems, but whom God helped because they could look outside of themselves for guidance and even help others. If the fact that God has us out here leading “normal” lives inspires others positively, perhaps that fact explains why God enables us in the ways he has, rather than simply making us like everyone else.

It’s fascinating how often I have been approached by people who have had some major tragedy in their lives years ago, such as the death of their baby, who prayed for a different outcome and now cannot forgive God. I don’t hold myself out as a Godly, or even a particularly religious person; so it surprises people that I am at peace about being blind—and hopefully gets them to think about what God has done for them, too.

Jody who lives in New Hampshire responded next:

Hello. Thank you for both of your messages. Here is my answer to your question, which you are welcome to share with the blind children and the parents’ newsletter.

When I was a little girl and I asked my mother why I was blind, she would say being blind is a character builder. I think she meant that the challenges I faced would teach me more than I would learn if I could see. When I considered that everyone else could see, I thought I might prefer not having all those challenges.

This was a hard lesson when I would come home crying because the other kids made fun of me, but I think I understand what my mother meant. Because I was blind, I had to think about things that sighted people take for granted. I had to remember where things were and plan in advance. I learned to rely on my memory and judgment in making decisions on what was right for me.

Many people tried to say I couldn’t do things when I knew I could. I had to learn to be determined. Whenever someone said I couldn’t do something, I did it anyway. I was told I couldn’t do judo, now I have a third degree black belt. I was told that I would have trouble raising a baby, now I have two children and one grandchild. I was told I couldn’t climb a mountain, I thought of that from the top of the mountain. I learned to know myself and maybe that is what God was trying to teach me.

Many people have easy lives and many people have very sad lives compared to mine. I was born very early and my parents were told I might not live. I could have died and so I am happy that I fought hard to live and if being blind is a result, then I will accept it.

It is important to think of what you CAN do, not what you can’t do. I can do judo, so it doesn’t bother me that I can’t play tennis. I am a ham radio operator, but I am not a bird watcher. If you read Braille then you can read in the dark when sighted people can’t. Think of what you can do that is special. Have a CAN DO attitude and you will meet the challenges.

Some blind people don’t like being different because they are afraid people will notice them. Other people do things differently so they WILL be noticed. There is nothing wrong with being different. Everyone is different from everyone else. Some people are tall, others short, others fat, and others thin. Everyone notices you are blind, but it really doesn’t matter because they notice all the other things about you too.

If God made us blind then it must be OK to be blind. We are all special in our own ways. It is important to be yourself.

Barbara Pierce is President of the NFB of Ohio and her thoughts came next:

We live in a world in which things are not always easy or pleasant. For one thing there is evil, and no one fully understands why that has to be, but apparently it does. I believe that God and His love are greater than evil and that in the end He will triumph over all that is wrong or bad.

But I do not believe that blindness or poverty or illness or natural disasters fall into the category of evil. These hard things can make us stronger and better people if we allow God to be a part of our effort to cope with them. St. Paul tells us in Romans that, “All things work together for good for those who love God and try to do His will.” I try to live my life like a sailboat. I don’t know where I am headed, and I can’t be sure of calm weather, but if I can allow God to stand at the tiller and provide the wind that fills my sails, I have learned that I will not end up on the rocks. It takes years and lots of experience to come to this faith, but I believe these things to be true. Blindness can be hard, but so can many other things in life. Trusting God is the easiest, most reliable way to survive and be content.

The last letter in this exchange is from Pat’s mom. She wrote in part:

Thanks for the discussion of “Why God Made Blind People.” I hope people did not get the impression that my son Pat, who wrote the poem the other day and read it to his whole school for a Religion project, was on a “pity party.” He is quite the opposite. ...

I do want to say that the letters sure made Pat think about God more, and I believe they helped him understand more. The people really wrote incredible e-mails about his poem, which meant a lot to both of us. I want to thank all who did!

I think one of the major problems with Pat is that he is very brilliant, first in his class at school, and because he is a bright child he is always looking for “that reason” and sometimes, there’s just NO reason. I think he’s finally beginning to understand that!

Thank GOD!

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