THOUGHT PROVOKER 51


Nancy's Secret


Last Updated July 07, 2003
To Provoke Thought Is The First Step To Beyond




     "Nancy's Secret," is the name of the new little book I've written for you.” It was bedtime; the mother sat down beside her six year old daughter and opened the handmade book with the pieced-fabric pictures.


     "Oh, Mommy, does the little girl have bad eyes like me? My name's Nancy!"


     "Yes, dear. Here we go. 'Little Nancy was a pretty little girl, with long dark hair, a cute smile, and a button nose. Her eyes were pretty to look at, however...'"


     "Did she have to get real close to see things, Mommy?"


     "Yes, she did, pumpkin. Listen now." the mother urged gently. "'...however, her vision required her to look closely at things. Everyone liked her! She was a brave and smart girl. Most people did not know her eyes were different. Little Nancy didn't tell them. She played, went to school, and was happy living with her family...'"


     "Did she have friends?"


     "Yes, honey, you'll see. 'Little Nancy had many friends. They liked playing house and school. When she was asked to play ball or ride bicycles or chase people in games, games that were hard for her to see to do, Little Nancy said, 'No, thank you. She would find a friend who liked dollies and the two of them had a wonderful time playing together.'"


     "But Mommy, didn't the girl want to play those games?"


     "SHHH, let's see what else she liked. 'Little Nancy shared her toys and learned to take her turn. Sometimes, if she couldn't see to read or see what someone was pointing at, she'd play like she could. She acted just like all her friends and she fit right in.'"


     Before turning the page, the young mother smoothed one hank of hair off her daughter's forehead . "'Little Nancy and all of her friends were special. Some were tall or short, some had blonde hair or dark hair, some had puppies or kitties, and some had secrets.'"


     A troubled frown etching her forehead, the child asked, "Do we always have to keep secrets, Mommy?"




RESPONSES
e-mail responses to newmanrl@cox.net




**1. “This story definitely raises a classic conflict that children with vision impairments encounter as they go through their daily lives both at home and at school - tell others I have a vision problem and be shunned or keep silent and be accepted.


As a child, I chose to tell others I had a vision problem and, of course, I was shunned. Even if I hadn't told others, teachers would give me large print papers and provide other adaptations that would make it obvious to my classmates that I had a disability. I accepted this as a reasonable cost so that I could get through school...although my Itinerant Teacher, Myrna would tell you stories of my resistance at times. *laugh*


I had a low self esteem as a result and, until I grew into adulthood and realized that it wasn't my fault I was shunned, I felt responsible - something was wrong with me and the other kids didn't want to deal with me because of it. Now, my vision impairment is just a natural part of who I am. As a matter of fact, I find it provides me a unique perspective on the world. It was the other kids' choice not to get to know me, not my fault at all. Trying to convince me of that as a growing and impressionable child, however, was worse than pulling teeth.


A child's self esteem is even more fragile than a delicate blown glass vase. It can be shattered with the slightest bump and it takes a long time to repair it...if it can be repaired at all. There are times as an adult that I still slip back into a self-conscious state of why people take extremely wide paths around me as I go about my life or who ignore me when I greet them as I pass them. I've come to expect this unfortunately, but I still make extra effort to be sure that they don't give me some sort of subtle sign of their acknowledgement. In many cases, I think people are even more blind than I as they'll nod or make a slight hand gesture even though I'm standing their with my white cane. I often wonder if they don't *really* want to make any effort at all, but they feel obligated to do so because there are others around who'll think less of them because they didn't acknowledge my greeting.


It doesn't seem to matter whether you're a child or not, the choice of telling others of your disability or keeping it silent is a constant dilemma. For over a year, I used to enter a potential employer's with my cane unfolded and I'd fold it up before the interview began - usually while waiting in the sitting area. I made my own job application up so I wouldn't have to fill out theirs and have a better chance of getting the job because I'd already have the required information in front of them when they made their candidate choice. No job came. At my most recent interview, I did neither of these things and I now am in charge of the Consumer Division of the company. What message does this send to you? Now, during the interview, he did ask me about my vision impairment and how I felt it would affect certain aspects of the job, but it was he who asked me. I suppose it is not as easy to hide my vision impairment as some can, but I still find that being open about it has proven more beneficial than not telling others about it.


Granted, I was encouraged to be up front about my disability throughout my childhood and adolescence, but there are times such as I have described above where I feel it is appropriate to allow the other person to bring up your disability. Now, if one chooses to not reveal things about one's disability at this point, it may very well cause some discomfort, but only then is it akin to keeping secrets.


If someone feels your disability makes you less of a person, they're not worth dealing with. Be strong. Be yourself and let others decide whether they want to get to know you or not. Its a hard-to-learn lesson, but, to me, its your best way to get through life - disability and all.


Hope this all makes sense!”


Shelley Proulx (Brighton, Massachusetts USA)



**2. “The mother in this story shares the all too common perception that blindness is something to be ashamed of and is teaching her daughter early that she is less of a person because she is blind. She is also teaching the child that in order to have friends the other children should not know she is blind. We all know what this means. The little girl will be a grown woman with a low self-esteem and will probably be dependent on her mother for the rest of her life if there is not some intervention. All too often rehab professionals see a form of this type of person. Some can be helped and some are too far gone. Sighted people need to get the message that blindness is a characteristic just like the color of a person's hair and it is nothing to be ashamed of.”


Angela Farmer (Dothan, Alabama USA.)


FROM ME: “Setting a kid up for life during those initial informative years… Boy, do the parents need to be smart about blindness! So what can we tell them as to how to get smart about this?”



**3. “This one is a real heartbreaker. So often the parents of blind kids with some vision think they are doing them a favor by trying to make them look normal. Unfortunately it isn't often this overt. Most of the time it is as insipid as praising a child profusely when they use their vision or criticizing successful alternatives that remind people of the existence of the difference. When you emphasize to someone that they must, at all cost, look and act like everyone else, you emphasize that you don't think they really "are" like everyone else. The fact that they must "pretend to be" connotes inferiority. A child is criticized for finding a nonvisual way to do a chore. This method is faster and easier than it would be if she used her vision and the results are good but the parent is chagrinned to learn that the method reminds them that their child is one of those inferior people. Such a child can grow up to be an adult who is embarrassed to be seen using blindness alternatives. It is better not to go to strange places after dark with your friends. If you go, you might not see a step or an obstacle. You might trip and they would be reminded (OR FIND OUT) that you can't see. Heaven forbid you ever be seen in public with a dreaded white cane. Why are parents so afraid to let their kids be different? Perhaps if that weren't the case, blindness wouldn't be the big bugbear it seems to be for society in general.”


One blind person with some vision, Jane Lansaw (Omaha, Nebraska USA)



**4. “My name is Nicola. I live in Sydney, NSW, Australia. I think that this story raises some important issues. I believe it is important to have both sighted and non-sighted friends. But I also believe it's really important not to keep your blindness a secret. For example, if your blindness is known to all, then you might play with a ball with a bell in it, or you might go riding tandem with your friends. Children are really adaptable. They can learn far more by knowing about a child's differences than by keeping them as a secret. I am blind (1/60 vision) and am proud of it. I know of a person who went and is still going through life keeping his blindness a secret. He is practically illiterate and I think that's very sad! People should be proud of who they are and parents should be proud of their children just as they are!”



**5. THIS IS REALLY POWERFUL. RIGHT OR WRONG? DOES ANYONE HAVE THOSE ANSWERS?


A LITTLE BACKGROUND ON MY FAMILY: MY MOTHER WAS FROM ITALY, MY DAD FROM FRANCE. I WAS BORN THE EIGHTH OF 13 CHILDREN . THE ONLY ONE INFECTED BY WHAT WAS FOUND AT AGE 11, A RARE BLOOD DISEASE THAT ATTACKS THE WEASEST PART OF YOUR BODY WHEN IT IS ACTIVE. I WAS BORN BLIND IN MY LEFT EYE AND LOST THE CENTER OF VISION IN MY RIGHT EYE AT AGE 7. THE NEXT SCHOOL YEAR FOUND ME IN A PRIVATE SCHOOL IN THE COUNTRY. THE TEACHERS WERE, FOR THE MOST PART, VERY KIND AND PATIENT. I WAS TAUGHT HOW TO LIVE, FROM MAKING MY BED IN THE MORNING TO SHOWERING AT NIGHT, I WAS REMINDED TO GO SLOW AND GET IT RIGHT. A WRINKLE IN THE BED, HAIR THAT HAD NOT BEEN BRUSHED PROPERLY OR A SADDLE THAT WAS NOT PLACE PERFECTLY ON A HORSE. EVERY CHILD IN MY CLASS WAS TAUGHT THE SAME THINGS AT THE SAME TIME, I WAS ALWAYS TOLD " IT TAKES LONGER FOR SOME PEOPLE THAN OTHERS". AGE 16 WAS, EVEN THEN, THE YEAR TO LEARN HOW TO DRIVE. ON THE WAY TO THE NEIGHBORING TOWN TO PASS OUR DRIVERS TEST, I HAD THE PRIVELIDGE OF DRIVING, AS I WAS THE ONLY ONE WHO HAD NOT HAD AN ACCIDENT IN THE PROCESS OF LEARNING HOW TO HANDLE THE "BIG MEAN MACHINE'. UPON FAILING THE EYE EXAM, I HAD TO BE TOLD, FOR THE FIRST TIME IN MY LIFE, "THE REST OF THE WORLD CAN SEE EVERYTHING THEY LOOK AT AND OUT OF BOTH EYES" IN 1992 I ATTENDED A WORKSHOP IN OMAHA. THE FIRST EMPLOYERS TRAINING FOR THE ADA. THE KEY NOTE SPEAKER TOLD A STORY ABOUT HIS VISIT TO ITALY. HE WAS TOURING THE FACTORY OF A FRIEND THAT WAS 100% ACCESSIBLE AND EMPLOYED PEOPLE FROM ALL WALKS OF LIFE WORKING TOGETHER AS A TEAM, WITH NO APPREHENSIONS. RICHARD ASKED HIS FRIEND ABOUT THE COMPENSATIONS HE RECIEVED FOR HIRING THE HANDICAPPED. HIS FRIEND EXPLAINED, THAT ITALY IS A VERY POOR COUNTRY AND THE GOVERNMENT DOES NOT HAVE MONEY FOR SPECIAL EDUCATION OR COMPENSATION. EVERY TEACHER IN THE SCHOOL SYSTEM TEACHES BRAILLE AND SIGN LANGUAGE. EVERY STUDENT HAS THE OPPORTUNITY TO LEARN THESE SKILLS. NO ONE, REGARDLESS OF RACE COLOR OR CREED, IS CONSIDERED HANDICAPPED.


BACK TO MY BACKGROUND, MY MOTHER WAS FROM ITALY. AS A YOUNG PERSON I WAS ANGRY, THINKING I COULD HAVE BEEN OFFERED OTHER OPPORTUNITIES. AS AN ADULT, I AM EXTREMELY GRATEFUL FOR THE TRAINING I HAD AS A CHILD.”


Lleana Messer (Nebraska USA)



**6. “I love this story. Okay, secrets. Do we have to call them that? It's more like self preservation. It's easier to just go along with the crowd than to have to explain to people who don't understand, who won't understand no matter what you say, to people who feel that if you're wearing glasses you should see 20/20. I've done like Little Nancy all my life. I still do. A few weeks ago my mother and I went up to a cardiac hospital to visit my step father. The place is called St. Francis. Mom pointed to a nativity on the lawn of the hospital and said isn't that beautiful. I replied that it was. Mom knows me better than that and moved closer to it and said again isn't it beautiful. This time I replied that it must look gorgeous when it's dark out and the statues are lit up. I've gotten in trouble throughout my life when I couldn't see something. People would scream at me what do you mean you can't see that? Or of course you can see that. Or what are you blind? Fudging a lot easier and safer, though if you're lucky enough to be around people who are willing to try to understand, I wouldn't recommend letting on the 'passing' routine.”


Patricia Hubschman (New York USA)


FROM ME: “How about this, sometimes giving in, not fighting the blindness/acceptance/understanding battle all the time? So when to fudge, take a rest, how much, how often, in which areas, etc?”



**7. “This one should be called "passing for sighted!" Mom is teaching her daughter to be ashamed of her disability shh don't tell why else would she tell her to keep a disability a secret? One day people will know then what? I believe Mom is well intentioned but needs to face the facts her daughter is visually impaired both will need serious counseling.”


Diane Dobson (Victoria, British Columbia Canada)



**8. “No, no, no!! I don't believe in keeping secrets!! What does that tell the child? Their blindness or low vision is something to hide, to be ashamed of. We are very open about Winona's vision (or lack of!). I think it makes others more aware--not just of Winona's situation in particular, but about blindness in general.”


Debby A. Bracket (Miami, Florida USA)



**9. “There is one sentence that really bothers me about this story. "Do we always have to keep secrets, Mommy?" The thing I wish this mother new is that her daughter can play these games (just a little bit different). I am wondering, do you think the mother is hurting just like her daughter is?”


Reinhard Stebner (College Station, Texas USA)



**10. “Do we always have to have secrets? What a great question not only in this context but in developing your life's philosophy and deciding how open a person to be, and what the consequences will be. Personally, my blindness was not a secret. I was totally blind as a child and though I did all of those rough-and-tumble games, there was always that point of slamming into a tree or falling on the hill on my roller-skates. It was not until I was older that I learned to be embarrassed. I would jump up and do it again. I do not think partially-sighted children should have these kind of secrets, they should be encouraged to share and be accepted for who they are. As adults we wonder about this secret. What about the job prospect I will be contacting by phone? What about a possible date? No, secrets about blindness usually don't work, but only lead to more problems.”


Vicki Meizinger (Massachusetts USA)



**11. “Part of the dilemma for a low vision/blind child, is the fact that perhaps they project an image of normalcy in everyday life. Is it to protect themselves or delay the process of dealing with an alternate way of "seeing" things? Could it be the child does not want to appear visually impaired to please the parents and look "normal" for them? It seems that supportive parenting would be to embrace the whole child and support an attitude of honesty with them. Parental attitude will help the child reflect an accurate picture to the world and allow them to be as they are, not a hollow image of what society might expect.”


Suzanne Lange (Chico, California USA)



**12. “This is a great Thought Provoker, especially for someone who is newly blinded. I think this because sometimes, newly blinded individuals are uncomfortable sharing their blindness with people whom they encounter. It has been my experience that most people do not treat me different because of my blindness, but I feel it is important to tell new friends or teachers about it in the beginning so there are no misunderstandings or arguments because I might not be able to do something or participate in an activity.


With a child as young as the little girl in the story, I am guessing Nancy is about six or seven, I think it is important for these youngsters to begin learning self advocacy skills, which might mean, in some situations, telling sighted people what the child can or cannot see. Being up front and honest at a young age is important, especially if parents want to instill into their young blind child that it is OK to tell others about their blindness. Personally, I believe it is best to be up front and honest with all individuals. Even though I say that it is best to be up front and honest, I have had experiences where it might have been best to keep it concealed from individuals. In college, for example, there was an individual whom I was friends with for two years. However, in our sophomore year, we began having problems that might have been prevented had I not been so open and honest with him. Because I did tell him about my blindness, it was as if he was out to take advantage of it by walking at an incredibly fast pace or doing other things, I. e. repeatedly removing the tip of my cane and hiding it from me. This individual has many psychological problems, which I do not blame myself for in the least. However, I feel that he was malicious, and with the knowledge of the blindness, he was even more so. I repeatedly explained to him that I needed the tip to fit securely on my cane so I could use it for O&M purposes. He understood for a few days, and then it was back to his old ways again. Regarding the gait problem, I would ask him to slow down because I could not keep up with him. Finally, when that did not work, I just gave up on the entire thing and let him get ahead of me. At that point, I really did not care about whether he walked fast or slow. I finally came to the realization that I can walk at my own pace and will eventually reach my destination.


What I am trying to say is that it is best to be open and honest, but one also needs to have good common sense. If you feel that the person you might tell about your blindness could use it against you, as in my case, don't tell him or her. Keep it to yourself even if you use a cane. I realize a cane is an obvious tell tale sign (I use one myself), but try not to give too much information in cases like this. I gave this individual allot of information, and, in the end, it all backfired to cause the demise of our friendship.


If you do tell someone about your blindness, I would strongly suggest laying down some ground rules of sorts. I am not trying to suggest that, just because you tell the person in question about your blindness, you should expect to be treated differently. What I am suggesting is that you and the person work out some simple modifications. For example, if you have nystagmus and you know your nystagmus is triggered by flashing lights, make it an agreement that the person will not flash the lights on and off. I did not do this with the individual I have previously mentioned, and I later regretted it.


I realize that everyone, or most everyone, on this list are adults, so what I am going to give as my next suggestion is something you should do only as a last resort if telling the person in question about your blindness causes problems. When I told the individual about my blindness, he thought it would be fun to belittle other blind people, and especially someone with cognitive issues. A very good friend of mine is blind and has cognitive issues, and the individual in question knew about this. He acted nice when this friend came to visit two or three years ago, but when the friend was in Washington State, the individual on campus let loose all of the plans for making fun of the other friend he had been storing in his little brain. When the VI friend was on campus, he wanted to smell something of mine, which was fine. However, when the sighted individual heard about this incident, he set out to mimic the VI individual's behavior and make him appear less intelligent than he is. Two incidents are of particular note. The sighted individual mimicked the VI individual's desire to smell my medication, but he did not return the pill like the sensible VI individual did. Instead, he hid one in his pocket and made me believe he had taken it. (This medication is powerful stuff -- anti seizure meds). I was scared that the sighted person would have a seizure, but he eventually returned the pill because he did not want me to "spaz." (His word). Another thing the sighted person did was imitate one of the VI individual's previous obsessions (he has OCD). For years, he wanted everything, except colors, proved. The sighted person knew this so set out to make the VI person appear more obsessed with proving than he had been for years. At this infamous breakfast, he wanted me to prove what red was. I was shocked because the VI person NEVER asked you to prove what a color was. He is smarter than that. I went along with it, and that is how the whole pill incident unfolded. What I am suggesting from this rather long recount of past events is to monitor what you show or tell a sighted person who appears to be not as mature as you once thought he/she was. Asking someone to prove a color and then taking his/her seizure medication is very immature and childish behavior I think. And, especially coming from a sighted person whom I thought was a friend. I hope this helps.”


Alexis Read (Moorhead, Minnesota USA)



**13. “Do we always have to keep secrets? No. But sometimes we think it's in our best interests to do so. I was six long before there was an IDEA, or even the idea that blindness was a civil rights issue. You were pretty much at the mercy of those who made decisions about you. There was no blind culture that I knew of, and certainly not any books about blind girls who pretended they weren't.


Early last year, I attended a high school class reunion. We all decided who was the best teacher. When I returned home, I decided to look him up on the internet and tell him. We hadn't corresponded very long when he said he didn't realize I was blind, and didn't remember what he did about it. I certainly did. The teacher the year before made me leave the class if they were doing anything that required seeing. This teacher sent work home for my mother to type in large print, read to me, explained things... Anywhere here's what I said to him.


"As for my own situation, well, there is more I'd like to tell you. I don't know if it's just to clarify things or because I need to talk about it. Please understand that this isn't what I wanted to tell you when I originally wrote to you.


Well, RP is, as you said, progressive. The thing is, in my case it had progressed all the way to what it is now well before you met me. I wasn't blind in the sense of totally without sight, but I couldn't really depend on the sliver of field vision I had, and the widely varying visual acuity that was barely above 20/100. At night I couldn't see anything at all. As I said, being labeled blind didn't get me anywhere. I got lots of messages that the VSD (visual stimulus dependent) had no interest in being liberated from their condition. They'd rather get consumption. Nor did they have much interest in knowing what it's like to be in my condition. To use Irving Goffman's term, the "near-blind" had a slightly different status, but there wasn't any label for them, at least not one that was easily understood. They did understand near-sighted. So I could be a geeky kid with glasses who needed large print. That made me almost acceptable, and I could at least to some extent, negotiate for things. Except that wasn't what I was, and I can't begin to tell you how much physical and emotional energy it took to perpetrate that hoax.


I'd find landmarks that were big and colorful, but they'd disappear on bright and sunny days, at night, or when it snowed. I learned to scan with my sliver of tunnel vision so I could cover something approximating normal range, but it looked weird, so my timing had to be pretty good. I had to come up with reasonable explanations for the inevitable collisions with people or things. I learned to throw pretty good fits if someone moved things from where they were supposed to be. I was pretty good at recognizing voices, but, of course, I had to get people to say something first. I know a few people who went to public school around the time I did. They also had RP, but their difficulties were never identified as a problem with seeing. They were just klutzy, couldn't read, flaky, or whatever other explanation people could come up with. I, at least, got some fairly decent low vision aids, but that wasn't until high school. So, if you ever did want to talk to me about disability issues, that's what you'd have had to unravel"


Abby Vincent (Culver City, California USA)



**14. “I find this story to be interesting. I think it is extremely important for children to understand they see, hear, speak... differently. I know that for me growing-up was confusing at times. I had vision in one eye until the age of 6 years old. But, I could never understand why the kids had fun drawing on the black board in school, playing double Dutch, or lying on the grass looking at the stars... I do not think a child's vision should be kept from them. I remember asking my mom what she saw when she looked into the sky at night. She began describing the stars to me as we would walk our pet dog at night. This is a very fond memory of the time my mom and I spent with each other. She made descriptions that would allow me to picture things in my head. I know of a little girl--she is in 4th grade and is legally blind. While on a mobility lesson she would guess about what was in her environment. Things like the color of cars, what kind of sign, is the traffic light red, green or yellow. When questioned about it, she said she did not want to get in trouble. When her teacher-who was only observing the lesson asked what she meant, the girl said she gets yelled at home--the example the girl gave was her not being able to clean all the spilt rice off the kitchen floor--since she could not see it. She did use her hands, but, as a blind adult who has spilt rice, that means you can just sweep it to an other area and not realize it is there. I think it is silly to not let kids know they are different. I also know of a child who is 6 years old. She has retinal blastomia (sorry about spelling) and has a prosthetic eye. Her mom calls it her magic eye and told me that only having one eye will not impact her daughters learning, driving, ability to get around... This broke my heart. If these two little girls were in a setting where it was okay they would have a better understanding about themselves.”


Lori Scharff New York USA)



**15. “I wasn't entirely sure where the bedtime story was going, but if the mother was using it to open discussion with her daughter about self acceptance, then I have used the same technique when broaching how my child felt about having a mother who was different from other people's moms. As to the idea of passing. I don't think I have ever done it intentionally. Good posture, a ready smile and a little grace in movement have from time to time fooled someone in to believing that I actually saw more than the big zero that I do. My mother worked hard to be sure I maintained eye contact with people after I lost my vision. Things like that seem to make a difference to sighted people. When talking to the young visually impaired, I try to make them understand it is better to be honest about what you can and can't see to avoid misunderstanding. When you don't wave back at a friend, they will believe that you are upset or are stuck up. If you stumble off a curb, you might be judged to be on drugs or drunk or just a real klutz if people don't know about your visual problems. If Nancy's friends knew about her problems, they might think of ways to include her in their games, but as long as she hides behind a pretense of non interest, they will just decide she is no fun. So, my answer is, no we shouldn't keep secrets like Nancy's.”


DeAnna Noriega (Colorado USA)



**16. “For some reason, after reading this story, I felt frustrated, not knowing how it ends. So, I've decided to express my feelings on this scenario by composing my own ending.


One day, a new boy named Paul moved in next door. Nancy and the other kids were fascinated by him. When he walked, he tapped a long white stick from left to right on the sidewalk in front of him. When kids asked him why he used the stick, he said that it was called a cane and he used it because he could not see anything at all and by tapping the cane in front of him, he was able to keep from hitting obstacles.


At school, instead of squinting to read print books as Nancy did, Paul used big thick books that had dots on the pages. When ask, he explained to other kids that this is called Braille and that a certain number of dots is a specific letter or word. Some kids teased him but most were very impressed with him and treated him as an equal,.


After watching Paul for a while, Nancy made a decision. She realized that if most kids could accept Paul for who he was, despite his blindness, they could accept her for who she was, despite her visual impairment. So, she went to her teacher at school and told her secret. Soon, she was learning to read Braille and use a cane. Since she had some vision, she also learned to use a closed-circuit tv reading machine, which magnifies print. Although the other kids were surprised to learn Nancy's secret, they were just as impressed with her as they were with Paul.


Like Nancy, Paul did not participate in sports. So, during recess, while the other kids were playing ball, he often helped Nancy with her Braille lessons. They spent a lot of time after school as well. Paul had a deck of Braille playing cards and he showed Nancy and other friends how to play such games as "Go Fish" and "Crazy Eights". They often went to movies together with their sighted friends, who described the action on the screen for them.


When they were in high school, they dated just like other teen-agers, often double dating with sighted friends so they would not have to rely on their parents for transportation. After graduating from high school, since they both had different career interests, they went away to separate colleges. But after graduating from college, they moved back home, and were soon married. Although they had difficulty finding jobs due to their disabilities, they supported each other and were eventually successful. Thus, they lived happily ever after.”


Abbie Johnson (Sheridan, Wyoming, USA )


FROM ME: “I liked it! Anyone else wish to tell the reast of the story?”



**17. “I played the 'passing' game for most of my life. Like Nancy I was convinced that I had to keep my poor vision a secret. The concept that blindness is to be kept a secret is far more devastating to a person's self esteem then blindness could ever be.


Passing costs self esteem by convincing someone that they should be ashamed of their poor vision. It costs them their education as they try to do things visually and ignore alternative techniques that would make them more successful students and it costs personal safety as they try to travel visually, but with limited vision.


Then, when vision decreases and you can't play the passing game any more you feel like a complete failure. You have to face what you have been running away from all your life. When you finally accept yourself for what you are, you resent the people who made you feel you had something to hide.


Far better to raise a child who openly accepts their blindness and learns the skills they need to succeed without hesitation. Of course the first step here is parents and teachers who can accept the child's blindness with the understanding they will do everything to help the child reach for the stars even if they can't see them.


Here is an article I wrote on the subject a few years ago. I played the passing game until one day when I rushed to catch a bus with my 4 year old son. When I got on the bus the driver yelled at me for running in front of a truck. I had never seen the truck. It occurred to me at that moment that my passing could have cost me and my baby our lives. No more passing for me. Reality took over.


That was 25 years ago. I have now come full circle and I have accepted all that I am. I realize now how much more I could have accomplished if I had the skills I needed from the start. I could have avoided all those years of stress and self doubt.


JODY


The Danger of Passing by Jody W. Ianuzzi


What is passing? It is not a new phenomenon. Various groups of people have attempted to pass for years. Passing is behavior practiced by members of a minority to appear like the majority. In the past African Americans straightened their hair to appear white. People even changed their names from Roberto to Roberts to seem more Anglo. People with disabilities have worked hard to keep their disabilities from being noticed. For a legally blind person, passing is learning to play endless games to appear to see things that can't be seen.


Why should a legally blind person attempt to pass as a sighted person in the first place? I played the passing game for most of my life. It starts out innocently enough. A small child realizes that parents are happy when the child can see and sad when he or she can not. Another problem is that the child doesn't realize they only have 10% of normal vision. The parents assume that when a child says they can 'see' something, that they see the same things as a normally sighted person see.


When I went to school in the '60's, I was always afraid that, if I couldn't see and keep up with the sighted students, I would be sent away from my family. I came to believe that my parents, the school, my peers, members of the opposite sex, and future employers would accept me only if I was sighted or pretended to be sighted. I was told I had 'overcome' my blindness and I wasn't raised to be blind. (as if it is a choice)


The stress levels resulting from trying to pass are unimaginable. Every time you walk into a room, you are terrified that someone will find out your secret. Your hands shake at the thought of the possible traps awaiting you. Will there be stairs? Will someone hand you something that you don't see? Will people notice you don't make eye contact with them? I remember when I began taking horseback-riding lessons, the instructor asked what I could see. I said I could see when I couldn't for fear of not being allowed to ride. I remember confiding in a friend that I had problems seeing. I was sure that, once she knew, she wouldn't be my friend any more.


The really sad thing about passing is that it inevitably catches up with you. Your vision will decrease, or the demands of a busy lifestyle will make it impossible to keep up. How do you explain you don't drive? When it does catch up with you, you go through a period of self-contempt because you can't pass anymore, and you feel like a failure. You are terrified of being rejected by everyone you have always passed with.


Then, when you eventually come to accept yourself as you are, you resent all the people that made you feel as though it was necessary to pass in the first place. You ask yourself why they couldn't have accepted you the way you are. I knew a wise woman who discovered the truth about passing long before I did. She used arm crutches to walk slowly. She had some movement in her legs, but it was very limited. One day she realized that the only reason she used the crutches was to appear as normal as possible. She decided to start using a wheelchair because it was more efficient and faster then slowly walking with crutches. She went on to become a finalist in the wheelchair races at the Paralympics. Today she has to start marathons first because she leaves the runners in her dust. We could all learn a lesson from her example and the example of many competent blind people.


Why was I taught that I should choose between being a competent sighted person and an incompetent blind person? I have met many competent blind people who have mastered skills from climbing mountains to walking across the country to sailing oceans. Yet I still hear of children who believe that they must hide their blindness. They are ashamed of what they are. I still hear of teachers who settle for a slow print-reading speed when the child could read twice as fast using Braille. I still hear of children risking serious accidents because their parents don't recognize that they need a white cane. Why! I envy the blind children who are raised in a matter-of-fact environment by parents and schools that accept their blindness openly and encourage the blind child to reach for the stars anyway.


Passing is like being followed by a dark shadow. One day that dark shadow catches up with you, and you realize it is an angel telling you that it is okay to be blind, that you are still a whole person, and that the world won't reject you. It is much easier and safer to accept who you are and stop fooling yourself.


Let's put an end to passing!



**18. “Well, I don't know if I just grew up somewhere different or what, but I didn't have this *horrible* reaction that others have spoken. I grew up hearing impaired and before anyone jumps up and proclaims "that isn't the same" let me also state that I had an undiagnosed vision problem, too. I was not diagnosed with RP until I was eighteen. However, I believe that all children who are *different* from the majority whether it be religion, race, disability or lifestyle go through this difficult choice......do I tell?


Now, my parents and I chose to be open and totally honest with not only my teachers but my classmates. I remember at age seven, standing in front of my second grade class, taking out my hearing aids (by then the behind the ear type) and showing my class. I remember demonstrating how muffled my hearing was by clapping my hands over my classmates' ears and having my teacher recite spelling words to them; which none of them got right because they couldn't hear them. I remember how scared some of them were when they realized that they were left in the classroom when the mock fire alarm went off.


I went through elementary school with most of them and junior and senior high. We were a fairly close knit bunch of about twenty or thirty kids.......I was a fairly shy child but I really don't remember any taunting or meanness from any of them because of my hearing loss.


In fact, I found more problems existed if I didn't say anything. Then people believed I was a snob or stupid. If I wasn't forthcoming about my hearing loss and then misunderstood what was said.......or laughed inappropriately......the consequences were so much worse.


I actually found adults are so much more cruel than children. Children tend to accept differences much better than adults......which in turn leads to more accepting adults.”


Debra Streeter, M.Ed. (Victoria, Texas USA)



**19. “’Do we always have to keep secrets?’ Do we always have the choice? I was born with no more than light perception due to cataracts. They were removed, and several surgeries later I was a normal child, well just about normal. I wore very thick glasses and was otherwise expected to cope as well as I could. I sat in the front of the classroom, and honestly did not understand why I always was there while the other children were able to be in different places and still see the board. I read regular print, played all the games in gym (which left me terrified of any games involving projectiles to this day), and walked without a cane, despite bumps, bruises and other minor injuries. My parents always told me that I saw just like everybody else as long as I wore the glasses. My great aunt and uncle were both blind, but that had nothing to do with me. Suddenly, out of the blue, my teacher at school recommended that I attend a summer school program at the Nebraska School for the Visually Handicapped. I had a poor social life at school, so I was willing to go to the program, but I was terribly confused. I was in 7th grade, had finally realized that I did not see quite so well but I was not "visually handicapped" so I did not understand why I was going there.


I am now 21, and a student at the Colorado Center for the Blind receiving the training that had been nearly non-existent throughout my childhood. I am learning to not fear or despise my blindness, though at times it is still a real battle. I feel lost in the middle, not really sighted, but condemned for being blind. I have been told by friends and colleagues that I have real issues with my blindness, and I suppose that they are probably right. Though I cannot help but wonder if I would feel different had I simply been told when I was young that I was blind (or at least visually impaired), and allowed to learn the alternative techniques. It is all in the past now, but perhaps I could have been different, if I had been allowed to make the choice.”


Amy Mason (Presently in Denver, Colorado, though my real home is Nebraska USA)


FROM ME: See this response in the following alternative view, see it as a puzzle, find every point that could have been handled differently, better. I say better, because at its conclusion the writer mentions wishing to have had a choice.”



**20. “I can certainly identify with this one. As a kid I was partially sighted and in a normal school, but my parents also urged me to make use of the vision I had as much as possible. Of course there was nothing wrong with this, except that I don't think I realized how little I could really see and more important, the teachers did not realize. Therefore I tried athletics with the other kids and nearly ran myself unconscious into a rugby pole in the way, lost points in arithmetic once because I did not make a complete circle when making a zero and it was taken for 6, got teased for not catching balls etc, etc. Even at university when my sight really deteriorated, I did not acknowledge or perhaps realize how bad it was. I would miss classes because they dug up the sidewalk at one stage and I just did not know how to get past that. Sometimes I had friends with whom I could walk which made it easier, but it caused a lot of stress when I had to walk alone. I got along quite well on the academic side of things, but socially and emotionally I struggled more. Sometimes I wish I could relive my childhood and teenage years with the knowledge, acceptance, skills and confidence with which I function now. I'm not blaming my parents as I truly think they just tried their very best. Also, I don't think they ever knew that I had an eye problem which would cause near blindness (I have RP). At least I learnt to draw on my own resources, to persevere and to become less vulnerable, but it was a difficult learning process.


This is really an interesting provoker and made me realize how important counseling is for parents. Where must they get all the knowledge? I'm sure many of them really love their kids and think they're doing their very best for them.”


Retha Stofberg (Kimberley, Northern Cape south Africa)



**21. “This is such an imperfect world. We have people that are born or later become impaired. Then we have situations where the disabled person can learn to function in the normal range of getting things done, yet we have people around them in the stream of life, the normal ones that can’t accept those who are different. Sure, the normal population doesn’t always know how a disabled person can make it and after they learn that it is possible, it still doesn’t mean that the disabled person will be allowed to participate fully. So here you have disabled people feeling they need to hide their differences in order to have the best chance to have a life. Passing is a choice and sometimes the one that feels the best. But we know that avoiding a problem usually means the problem will eventually surface, so you say “was it the best move to hide it?” Eventually you have to do something about it. Then the question is, at what stage in a persons life do they best learn the skills and thoughts that will make them the most whole and strongest person. Is that as babies and a child growing up with alternatives and support or is it okay to try and learn all the needed blindness skills later in life when you are older? When do you pay the price of everyone knowing? When do you work on being the best with all special skills and knowledge going for you?”


Betty N. (Ohio USA)



**22. ““Setting a kid up for life during those initial informative years… Boy, do the parents need to be smart about blindness! So what can we tell them as to how to get smart about this?”


I think it is important that the parents talk to others who are blind or parents of the blind. I know my mom would have been much happier about the hole thing if she could have talked to someone about the blindness thing. My parents believed ferry that I should be included in all decisions. My parents let me ride my bike until it was obvious to me that riding would no longer be a choice (by my self). My dad new I liked riding bikes so he built me a bought me a tandem bike. My dad has the approach of lets attach this thing and lets put it out in the open where all can see. I also agree with one of the posers that I must be important to give out blindness info with a grain of salt. I think it is also interesting when I find the people who think they know about blindness and proceed to tell you how you are going to do something when they have it all wrong. When you try to fix the problem, they get mad at you and that is the end of that.”


Reinhardt Stebner ()



**23. “I dislike the mother in this story. I don't like how she discourages Nancy from playing games at school. I agree students with visual impairments have no need to hide the visual impairment. However knowing that you are different than other people does nothing for you when you are older. I grew up with the idea that it was okay that I was different that it was okay that it took me longer to do assignments for school. Now I get nothing in Braille, I am expected to be like everyone else. I am a college student and was extremely frustrated with a class I took last semester dealing with the topic of multicultural nonsexist education. One of the principles of the class was how all children should feel welcome in the classroom and how they should know it is okay to be different. What happens to these kids of minorities when they get older? That's great that they have a positive self-esteem growing up but what happens when they attend college or get out in the real world and find out that no one cares how you feel about yourself and that you maybe different but that really won't get you far when you have to compete with everyone else who is sighted or Caucasian or whatever.


Another focus of the class was children who have a native language. Okay I have always thought of Braille as a separate language or a separate code then print. I am expected to learn what I need to from readers and taped books. Or if I have the time I can tape my readers when they read to me or I can scan in my own documents because the education dept. isn't fast enough to process them.


I am not a happy education major like they want me to be. So I act because I have to get an education degree before I can go on to grad school to get my masters in teaching visually impaired students. Do I want to go into teaching students with visual impairments? Yes I do. Do I think it will make me happy no not really. It doesn't really bother me though because I need to get a job. I used to want to be in music therapy but the standards for music majors were too hard for me. I grew up thinking it was okay that I hated learning to play music by famous composers that it was okay to slowly learn Braille music that it was wonderful that I could play by ear. Well no one cares when you major in music.


You are hated in ear training classes and sight singing and theory because those make sense and the other students are struggling.


I don't know how many times professors would say to me you have perfect pitch because you are blind. I didn't even know I had perfect pitch until I went to college. In classes they used to have me demonstrate how I could tell what notes were being played on the piano or I would sing the pitch for sight singing class or I was in charge of telling the other students if they were in tune or not.


I didn't mind doing these things but what type of lessons were my classmates learning about blindness? I am considered to have this wonderful musical gift and am play for a country church when I go home for visits. I don't see myself ever advancing to playing for larger churches so I am not into expanding my piano skills a lot.


I would love to major in music again but I don't have the time the ambition to do that.


I can not tell you how much print material I have accumulated in college notebooks full of it for education classes. I do label the handouts to help me organize the portfolio but still I need assistance putting it together.


these portfolios contain all print pages no Braille. I refuse to scan in fifty page handouts or even five page handouts. I would like to say I am lazy but I do not see this as my responsibility to scan in my own handouts or textbooks.”


Lisa



**23. “This is very interesting because we all must deal with this topic in one way or another. I would like to address a couple of points.


First, many people have mentioned "passing". Passing in the context of a disability or as I have read about it race is a very complex issue. I do not feel that is a totally conscious discussion on the part of the passer. I had to read the book "Passing" for my American Literature class in college and it is about light-colored blacks passing into white society. But as I said, it was very complex. There were some that did not pass and they had their reasons for doing so. I think the same can be said in our situation with our visual impairments.


I admit in my life I have done a lot of passing because I had tried it the other way, making my impairment known to my peers and other people, and I had been shunned and hurt deeply. I will never forget the whispers or looks I got in elementary school, third through sixth grade as in K to second I went into a VI room for parts of the day, when my traveling resource teacher came once or twice a week to pull me out of class for an hour. I was a likable child, very active and loved to play. All I wanted was friends and to fit in. I am not the one who made the choice to be alone, I did everything I could to make the other kids see that even though I could see as well as they could I was still a kid just like they were in every other way. After I switched schools to start third grade it took me two long, hard years before I made one good friend that would stand beside me. I still thank God for him because for whatever reason the minute he became my friend I was fine with everyone else. Had I changed in those two years? No, I was still the same kid just two years older. As I have mentioned before, my middle school and high school years were beyond horrible. I quickly learned that letting my impairment be known was not the right choice. However, I also know that I had no chance to try to pass because the school counselor and teachers made the decision for me. I think this really does happen. They made the decision that they should not try to be sensitive to my feelings. They did not try very hard to help me in the classroom nor did they try to care. I can name many examples more as to why in a lot of situations I do decision to pass consciously. I don't want to try to explain something that no one understands. I believe that you can't totally understand unless you've experienced something, in this case being visually impaired or blind. People take their vision for granted. They get up in the morning and open their eyes and go about their day. They never think twice about having to plan out their day so they will have enough sight to last them through the day or any of the other things we have to deal with. I also don't want anyone's pity and that goes with people knowing.


The second thing I want to address has to do with what someone else said. They asked, "do you think the mother is hurting just like her daughter is?" My answer is definitely! Any parent that truly loves their child and cares about the child's day to day life away from home would hurt too. I know for a fact that each day I came home from school in middle and high school almost or in tears from the harassment and loneliness of having no friends at all she hurt. She has told me so since then how much it hurt her and how she would have done anything to make it so I didn't hurt. My mother raised me to believe that I am as good as the next person and I can do anything I put my mind to. As she has put it, she never treated me like I was disabled. She knows the heartache and problems of being disabled (hers is from having polio at six months old not her sight) all too well. She did not want me to go out into the world as a young child thinking of myself as less than and unable to do things because I couldn't see 20/20. The most important thing she ever did was treat me as a human being, with dignity. If I needed help she would be the first one to help me knowing full well that I had tried my best before coming to her. She has always been more than willing to help me if I came to her. She has never stood over me saying, "can you do that, can you see that, be careful you might get hurt". She knew that I would learn from any mistakes I made and that I would find ways to do the things I wanted to do and if I needed help doing that I knew I could ask her.


We cannot protect children from being hurt, no matter if a child is "normal" or has a disability they are going to get hurt sometime. One of the best things I think we can do is let kids be kids, let them explore their world and be there for them if they need it. Let them know that you can try anything, you might fail but everyone fails at something. You'll be good at some things and not others. And as far as passing goes, I think that when it comes down to it is the child that makes the choice. Kids are impressionable, but when they are in the world without mom or dad they will do what feels right to them. That is how they learn to cope. It is not a perfect world and to be truthful I think when you have an impairment or something the world does not think is "normal" you are going to have lower self-esteem as you grow up. But as an adult now I know that it wasn't me that was unaccepting, it was them. I am comfortable in my skin and I am proud of who I am. In the end if we all try I think we can get to that point where we will feel okay about ourselves and know who we can trust with our vulnerable side that includes our vision impairment or blindness.”


Wendalyn (Nebraska, USA)


FROM ME: “Where is it, at what stage in life does the child gain that basic foundation for coping? Do they come upon it naturally, does it just happen from within? Or does it develop as they go? And if it develops, meaning it can be shaped, how much of the earlier foundation is influenced by the parent? How much of the earlier stuff can a kid control themselves? And if a kid starts out getting allot of greave in their life, how easy is it for them to later change, how far can they go with this change?


Second, think that sometimes it just isn’t worth it, letting people know because even though you can trust yourself to live with it, you find you can’t trust that other guy with it?”



**24. “The responses to Nancy's Secret were certainly varied. I didn't appreciate the judgmental attitude of some people toward blind people who prefer not to emphasize, or even try to hide, their visual limitations. As I said, I did it for a while when I was in public grammar school. It isn't a rejection of yourself or of other blind people. It is just a choice, informed or otherwise, that is available to blind people, especially partially sighted ones, under certain circumstances. For me, the price was in physical and emotional energy. It wasn't in self-esteem, or the ability to participate in classroom activities with my friends. If we all learn to look at these choices more objectively, we'll gain compassion towards one and other, and, even more, a greater understanding of just how blindness is viewed by those around us, both sighted and blind.”


Abby Vincent (Culver City, California USA avincent@ix.netcom.com )


FROM ME: “Just thinking- To be different requires a person to be strong. Not all people around us accept differences in others. Some of us do not wish to be different. Some of us will never be strong. some of us will choose to hide being different.”



**25. “My family and I never made any attempt to hide my blindness. I attended regular school in a regular class. I read with special glasses and had to walk right up to the blackboard to read it. Some of my teachers were wonderful and some of them were real jerks.


I would occasionally get teased, but most of the kids in school were really nice. I think it puts a burden on a child to have to carry around that kind of secret.”


Janet Ingber (Queens, New York USA)



**26. “This story points up an error often made by parents and even some professionals. The premise behind the error is that a well-adjusted person minimizes his disability, even keeps it a secret, in order to fit in. The truth is, however, that such things aren't secrets after all. As Nancy grew older it would become more and more apparent to others that she was opting out of certain activities. Speculation would have arisen among her friends as to why she didn't play active athletic games. Incorrect conclusions would have been drawn and if this weren't talked about by Nancy her peers would have become uncomfortable asking the kinds of questions that would have promoted understanding. The parent would do well to encourage her daughter to talk about her visual disability. Further, with the kind of vision described in the story, it is likely this child would have needed special education for the visually impaired. Hiding the disability would have only resulted in increasing frustration for the child, both educationally and socially.”


Susan Knight, Columbus, Georgia USA)



**27. “This story makes me feel VERY uneasy!


While my eyesight was not a secret, I do remember that my grandmother NEVER spoke about it with others. There was the sense, in the Fifties and Sixties, that if you mentioned a thing, it would be made true, so you never really approached a subject so as to avoid facing it. I had NO idea I was considered "handicapped" until I was a teenager. In fact, my first realization that life, for me, was to be lived differently than everybody else, was the day, in my final year of high school, when I applied for Driver's Training classes and was FIRMLY turned down. The next day I was scheduled for white cane mobility instruction! My world crashed. Nobody had spoken about it, mentioned it, it was the elephant in the living room. You can see why this story makes me shiver.”


Sylvia Stevens (USA)



**28. “Many of the responses to "Nancy's secret" leave me disgusted at the least. Sure, Partially Sighted individuals have the hardest "row to hoe" because they don't bang into walls, and because in some instances, they can pass. But many of their difficulties are self-made and self perpetuated. Granted, kids don't always have the deepest self-insight, especially when adults around them--including teachers and parents--are giving them mixed or even ill-conceived messages. However, when one reaches or claims to have reached "adulthood", it is time to realize that that kind of "self-esteem" perpetuated by multi-culty academics is phony because it is merely based upon the premise that a blob of living protoplasm should feel good about themselves merely for breathing, and that everybody owes them some magical mystical respect for that accomplishment. Sorry folks, that's just solipsism, the idea that the world should revolve around ourselves--and when severe enough, it becomes autism, or schizophrenia, and if you buy Scott M. Peck's perspectives on Narcissism, can become evil as the false premise tries to perpetuate itself--self-agrandisement at any cost. "real" "self-esteem" to be maintained by an individual must be based upon some accomplishment, something that an individual can say, "I did, or can do", which makes me unique and special, and consequently can't be threatened by the lack of acknowledgement of any other human being.


If an adult is going to stand on their own feet, be able to accomplish anything for themselves and others, they must profit by lessons learned from their past, but not be mastered by it. Each moment one continues to breathe is an opportunity for one to turn around their lives, and develop and attempt to attempt a personal dream or goal, or, to give to others. If one continues to wallow in the "what ifs" and "should've's" of the past, they are being mastered by and conquered by their pasts, whether they were put upon or not, allowing that is settling for the role of victim and self-proclaimed martyrdom. That's truly selling one's birthright for a bowl of very pallid gruel... One oft suggested cure for such paralyzing self pity is to consider all of those in the world who lack the same opportunities that "You" (the individual) have. If one has scanning technology, for instance, and quails from the task of reading their assignments because it is hard, time consuming, and the results aren't perfect, one is denying the efforts made by those who developed such technology which can be used to assist one in garnering as much independence as that technology permits, and one is also playing directly into the hands of those who don't expect anything out of the blind and visually impaired, because there's the technology to enable one to function more independently, and the blind person petulantly chooses to eschew it's use. How can any blind or otherwise disabled person expect to be granted the respect of others if they don't choose to use tools and techniques which would enable them to do something for themselves, rather than put that task into the lap of another person?


We do not know what fears those around us who don't have what we may consider our "burdensome afflictions" are wrestling with because we can't see into their minds or hearts any more than they can be expected to look past their own pain and look into ours? For instance, I have considered the ramifications of that age old conundrum, "If I could magically be granted sight, what would I do? What would I be like? Would I change? Would my values change?" Consider the prospect of driving. I can't imagine the process of learning to use vision and make judgments enough to be safe. Yet, I personally know of partially sighted people who are on the roads, even if only rural roads, who have no earthly business behind the wheel, and who are endangering their own lives, their children's lives, and the lives of everyone on or around the roads they travel on. Personally, I can't imagine garnering enough self-confidence in my vision, reaction time based upon it, or ability to use it to keep track of the various elements around me well enough and make salient judgments based upon all of those criteria to make me believe I could ever learn to drive safely after 49 years of being congenitally totally blind... I'm not saying others couldn't do it, but that would be my personal take on it. Similarly, I understand that everybody is different with respect to their ability and methods of coping with the lives they live in. But, for instance, I grieve over the 10 customers I provided tech support for who lost their lives in the World Trade Center. Yet I know that is nothing in comparison to the grief felt by their family members, and colleagues and friends. I sometimes feel that I have to little self-discipline, aptitude, and available time to accomplish the many goals I have with respect to reading to gain more knowledge about the world and myself, learning to play a variety of musical instruments well enough and to use the various sound re-enforcement and studio tools I have to set those ideas down to share with others, or to be able to master the various aspects of computing that I feel would make me a better provider of technical support or cog in the wheels of product development. Yet in context, I know just how lucky I am as contrasted with the majority of blind folks in the world who because of the nature of the cultures and societies into which they are born, are destined to live in a poverty which 8 years as a Rehabilitation Teacher for Adult Blind in rural North Florida only gives me the most superficial glimpse of...


If we as blind people who are using computers--the most powerful knowledge manipulation tools ever to be invented by man--have moments of self-doubt and self-pity, we should sit ourselves down, and give ourselves a good talking to. We are so supremely lucky and gifted with resources of all sorts just by being in that strata of culture, as contrasted with much of the rest of the world, we have neither excuse nor right for such childish selfish emotions.”


W. Nick Dotson (USA)



**29. “I can easily relate to the part of the story when she would not ride the bicycle or play ball. I can remember when I was a young kid, my mother and father used to take e out riding on a small 1-speed bike. I was really nervous because I couldn't see where I was going. There was no telling when I would hit a bump and I could not tell whether I had turned far enough. Even with my mother and father telling me which way to go and what was coming up, I still didn't like it. I like riding 2-seated bicycles just as long as it is not an off-road ride.”


Eric Patterson (Blindfam)



**30. “O that made me laugh I could just picture a kid riding a bike with a cane in his hand. lol lol!


Well I went to a blind school and the kids there who could see didn't pretend to be completely blind.”


Rishie (Blindfam)



**31. “I have talked to others that had 20/200 vision when they were kids in public school. It wasn't that we were pretending to be sighted we just didn't know any other way. If I had carried a white cane in school what was I supposed to do with it when I road my bicycle home - fold it up and put it in my pocket? It wouldn't of made a very good baseball bat. I have a question for others on this group that may know - Do legally blind kids in schools for >the blind pretend to be totally blind?”


Charlie Web (Blindfam)


FROM ME: “ To answer this respondent, I would need to ask for clarification, what is your definition of ‘totally blind?’


Then second, Are the totally blind the only ones who use a long white cane? Do partially sighted people also use the long white cane?



**32. “For me there was not any question of pretending to be sighted because I didn't have enough sight to pretend I could see but I think I would have done if I could. I hated being blind as a kid, I refused to carry a cane because it would make me look too different and the reactions of other kids at school always changed when they saw I have a cane.”


Rishie (Blindfam)



**33. “I wouldn't say my blindness was a secret, but growing up I still had 20/200 vision in my good eye. With the exception of reading fine print or hitting a fast ball I could keep up with most the kids. I guess I never had a reason to tell most the people I know that I couldn't see well. All my close friends knew I had large print books and had to sit in the first row in class so I guess they knew something was wrong with my eyes. I never had a reason to consider myself blind because as a young kid blind means the old guy at the lions club Christmas parties with a long white stick. If I did tell any kids I was blind they would of called me a lire I'm sure. I did have a few kids ask me why my parents didn't get me glasses. I still have a few stupid adults ask me the same question.”


)My Web Site


FROM ME: “If we call this person blind, what is meant? What positive and what negative consequences will come of this?”



**34. “No, they don't at least not at the school I went. In fact we sort of separated ourselves by how much we saw at least for some things. I had friends with lots of vision but the totals always sat together at dinner. I have no clue why. And there were tricks and things you could do if you were totally blind to another total that would have been considered just plain mean if you'd had some vision.”


Shelly Pryor (Blindfam)



**35. “This thought provoker hits close to home with me. My parents were, and are wonderful, and they never tried to make me hide the fact that I had poor vision. In fact, they did all they could to help me out. But the person who was trying to hide it was me. I was just plain stubborn about it. I always had large print books and magnifiers, but I just refused to use them. All my teachers were wonderful, and they have helped me more then they could ever know, but I just haven't helped myself. In high school I began to use tapes, and I had large print papers and tests made, so that got me through, but if I had just accepted it, I think I could have done a lot better. Now that I'm in my first year of college, I'm trying to be more open to alternative means of doing things, but I am still not totally comfortable with my own blindness, but I want to be, I just don't know how to get there. I've just recently got involved with the NFB of Nebraska, and Nebraska Association of Blind Students, and that has helped, to see so many confident blind people, who are totally comfortable with it has been great for me. My advice, would be not to hide it, become comfortable with your blindness, and do all you can to live a successful and productive life. Maybe I should listen to myself huh! Sorry this got so long, but thanks for listening to me.”


Randi Strope (Orchard, NE USA husker_fan18@hotmail.com )


FROM ME: “Here we have the blind person telling his story of PASSING from his side. Thinking along the line of- ‘It takes two to make it work, both sides have to be involved,’ can you say that one side is more important than the other? Or, is one side of this duo harder to make happen than the other? Can the same source of positive reinforcement, like an association of blind students or a parents of blind children association work for all parties? ”



**36. “It is sad indeed when those who either lack knowledge and understanding about the ramifications of our visual limitations or who are ashamed of us for having them shape our lives during our childhood. Many times in our lives we are unwittingly cast into the role of victims. Perhaps there may exist some few who desire to perpetuate that role, but for the most part the majority of such individuals do not choose victumhood. They just do not have or know where to acquire the skills to overcome their situation.


Granted, people should heartily grasp the life jacket of options placed before them, but these options are limited to those known to the individual. One cannot take advantage of that of which one does not know. As to self-esteem, when considering the extremely abusive circumstances, in addition to blindness, that some of us have lived through, endured and overcome, we have every right to possess self-esteem. This is a dignity/right granted to all humans by our creator and no one has a right to relegate our humanness to the demeaning level of mere blobs of protoplasm. Self-esteem is not earned. It is a possession we have received from our creator, a God-given right, and one to be cherished and handled with care. We must work hard to build it; for without it we fall back into pits of darkness without the ability to see our place in the scheme of things. Protecting it and building it is our responsibility, but here too, we usually need some skillful guidance.


We should never be ashamed of who we are or of our limitations. Everyone has them. It is just that with some of us, our limitations are more obvious than are those of others. This makes neither us nor the other persons more or less important or relevant in life. It just makes us different. Technology has definitely opened a door of opportunity to many blind people, but it is no panacea. When the ability to deal with machines and placing ones entire focus on improving technology supplants the place of human relationships it has taken the place of our human individuality. What a sad world it would be to think that we are better off just because we have "things" and "abilities" that others are lacking. In 1994 I had the privilege of spending some time in Ecuador for some Missionary work. The people there on an average are poverty stricken. The common person did well to have running water in their houses and technology was totally out of the picture. But they had something that seems to be pitifully lacking in our "so-called" advanced society, they had strong loving family bonds, truly cared about others and were very humble. We can learn a lesson from this. Let's pray that we never let an excess of learning or trying to earn a place in society elevate us above others hence robbing us of our true birth right as humans--to be kind, considerate, compassionate individuals who in spite of limitations live to the best of our ability to make this world a happy peaceful community.”


Alfreda Trusty-Dotson (Pensacola, Florida USA saxy@pcola.gulf.net )


FROM ME: “So think of this, what might a mother and father feel after finding out that they had based upon advice of professionals and/or by societies general attitude toward blindness, that they had unknowingly raised/steered/nurtured their child to be a victim, a misfit? what might they do to make it not happen again to others?”



**37. “This in response to #28. I can't fully understand what it is like to be a total since I am not one. But as a partial I can tell you that there are some real difficult issues that I have had to deal with. Although I was never to REALLY pass as a sighted person, for most of my childhood I tried anyway. I have found the Blind Community to be fairly accepting of me, but haven't found the sighted to be accepting of me as "one of them." Because I DO bump into walls and others things a lot more than I would if I were fully sighted, I made the difficult decision to use a cane when I was 15 despite very strong opposition from many people. In fact, as an example, I got chewed out by a bishop for using blind skills and "giving up and just being blind", but also for trying to be independent instead just having others do things for me. It has been my experience that partials are expected to do everything they possibly can, no matter how inefficient, time consuming, and even painful, to pass for sighted in order not to make sighted people uncomfortable or inconvenience them. But at the same time they are unwilling to accept us as their equals. And when we want to do something that they don't want us to do, then suddenly we become, in their eyes, just as pitiful and incapable as totals. Ignoring these issues will not make them go away.


Now should we feel sorry for ourselves and play the victim role for the rest of our lives because we have had to deal with these issues? No of course not. We all have challenges that we have to deal with the best we can. And although we can't change the fact that we weren't taught all the skills that we need as blind people, we can do our best now to become and remain independent contributing members of society. And yes we should be grateful for and do the best we can with what we have and can get to have as good and independent life as we can.”


Anitra Webber (Salt Lake City, Utah USA)


FROM ME: “Interesting, I’ve seen this happen too- when you choose to take advantage of blindness skills to augment your visual ability, some people around you will react something like, ‘Don’t give up! Don’t give in to that weakness…’ so think, what re these people saying, where are they coming from? Who is correct in their action, them or you?”



**38. “>> Well I went to a blind school and the kids there who could see didn't pretend to be completely blind.” >>


David went to a school for the blind, and tells me that the school gave the partially sighted kids more privileges than the blind kids, so why would anyone pretend to be totally blind? A very damaging attitude on the part of the school, I must say. On the other hand, when my kids were growing up they would always grab their father's cane and pretend to be blind. They saw nothing wrong with being blind. It was simply a fact. If you were blind, you used a cane and Braille. if you weren't, you didn't, but you could pretend.”


Lori Stayer (Merrick, New York USA)



**39. “This is one of those cases were it shouldn’t be so tough to figure out, but because the way society is about blindness there is this problem. I think this group that says they are changing what it means to be blind should be commended and given help. I can see why I did what I did as a parent, the school vision teachers said maximize my sons vision and so we did, at the cost of down playing his blindness. Now he is struggling to undue all that we did. for shame.”


Mary J. (USA)



**40. "I realize that you are not going to print any more responses to "Nancy's Secret." Nonetheless, I feel it necessary to respond to Randy in Nebraska, below, and your comment thereto.


There is nothing, I repeat NOTHING wrong with using large print if your vision permits it. Large print is a valid adaptation, as are magnifiers and CCTV type enlarging technology. Tape is also a valid medium.


I don't know whether totally blind people resent low vision aids or whether fully sighted people prefer to lump together all those with less than 20/20 vision. But I dislike and am greatly bothered by the assumption that comes from all sides that if you are or become blind or partially sighted, the only way to be ""successful" in life is to learn Braille. I cannot read large print, standard large print is not large enough. Nor do I read Braille fluently enough to "read" a textbook or novel. Perhaps my hands are not sensitive enough. I have always found that reading Braille irritated and even hurt my fingertips.


Nonetheless, without the indispensable Braille, I have made as much of a success of my life as my other disabilities have permitted. I hold a B.A. and an M.A. in English. Until difficulties unrelated either to the post or to my disabilities forced me to relinquish it, I was briefly poetry editor of a small press journal. My poetry, fiction, and nonfiction have appeared in small press journals and anthologies fairly regularly over the past ten years. More recently, my work has appeared on a few noncommercial Internet websites, in addition to my occasional customer reviews for amazon.com. I have run, single-handedly, my own website for over two years.


Though I am fortunate to own a Kurzweil reading machine I rely principally, and have always done so, on recorded books and periodicals. I am an avid reader. Especially today with the proliferation of commercial firms providing high quality unabridged books of all kinds together with NLS, RFB, and XSB (The Xavior Society for the Blind), I have no difficulty finding accessible reading matter. My vision is more than equal to most household tasks and all personal tasks without Braille labels on the kitchen appliances, for instance, or my clothing. If Randy can see well enough to read large print, doubtless he does not need such labels either.


If he finds Braille helpful, I applaud him. The more media one can use effectively the better. But I am annoyed at what he says without stating it in so many words: Braille is the only effective and valid medium that a blind or visually disabled person may and indeed can use. That's hogwash. Whatever medium or combination of media works best is what a visually disabled person should use; and, if he chooses not to use Braille, he is not thereby automatically in denial or a failure as a blind human being.


Thank you.


Kerry Elizabeth Thompson (Springfield, Massachusetts USA)


FROM ME: "Here is a perspective for the above story, take it as another example of one of us who is making it by doing well with what they've got!"



**41. I grew up the first eight years of my life believing that I could see the same as everyone else. Even when I went to the only school for the blind in the Philippines, I still thought I was able to see like everyone else but that Braille was just another reading format that some people used while others didn't. It wasn't until I came here to the States at eight years old (I'm adopted) that I learned that I was blind even though I had light perception. I'd expressed my enthusiasm of being able to drive one day only to have the bomb dropped on me. At least, I viewed it as having the bomb dropped on me while my adopted mother didn't, being that she thought I already knew and understood. If the nuns at the orphanage ever mentioned my blindness to me or anybody else, I don't remember much about it, as my blindness was not the main focus on me. The main focus was that I be treated as normal as possible--expected to take responsibility for my actions, help with chores, clean up my room, etc. Sure, I was given a make-shift cane at the orphanage, but the nuns didn't have the patience to teach me how to use it properly or explain why I needed this thing. It wasn't until I came to the states that I had proper O&M instruction and understood the purpose of using a cane to get around. While I understood the reasoning behind the nuns not focusing on my blindness as something major so as to treat me as a normal child, I don't know why they never explained more clearly about what sighted people could see vs. what I was able to see. Perhaps they feared that my knowing and understanding about my blindness would be ammunition for me to use in making up excuses for not wanting to do something that was expected of me all because I couldn't see and that it didn't matter. I know that part of the nuns not talking much about it had to do with my taking so many visual things through my own eyes as a grain of salt rather than asking about it or comparing what I could see vs. what others could see. But, how was I to know that anything was different as far as what questions to ask, if there were any questions to ask? In short, I think that children with a disability should know from the start that they have a disability but that there are ways to compensate for the disability in doing things people who are not disabled people do. This way, while they may know that they have a disability, they also know that there's no way for them to use their handicap as a crutch or a cop out of not doing what other people are expected to do. As far as keeping secrets about your blindness, or any other disability, I was not so fortunate enough to be able to hide my blindness. Yes, I have enough light perception to be able to see in front of me, but I cannot see enough to read print or travel without my cane. In that regard, I've found that it's better to just come out with it. Sooner or later, the secret will come out either by how you do something or via someone you confide in about your secret sharing your secret with someone else. This not only applies to those who are unable to hide their blindness, but it also applies to those who are legally blind. Yes, there are going to be many rude or ignorant people throughout your life who will shun you at learning about your blindness, but there will also be many people who will still accept you as they would anybody else and would go at great lengths to make accommodations for you so that you can participate in the activities and/or tasks everyone else is doing or is expected to do. What I've learned is that those who cannot accept you because of your blindness are not your true friends. In fact, the only true friend I've ever had in my life is my husband. He not only accepted me as a person despite my blindness, but it didn't matter to him that my left eye has a light color to it because of the scar tissue or that my eye moved around a lot due to a paralyzed muscle. In fact, he never noticed those minor things until I mentioned it, yet running away from me has never crossed his mind because of those things while it did to everyone else. I think that people keep secrets about their blindness because they've been taught by their parents or sighted peers to be ashamed of being blind. For the newly blind, if they haven't been put to shame yet, they still attempt to keep their blindness as a secret not only from others, but also from themselves; a form of denial. They don't want to believe that they, themselves, are blind or are going blind. We live in a society that views blindness, or any other disability, as a deformity; thus, the person is *different*, not *normal*. As a result, the person put to shame about their disability or denying the fact of their disability to themselves resorts to trying to hide their disability at all costs. When they finally come out with their secret, or even if they've never held their disability to be a secret, they have to be strong in order to endure the notions and stereotypical attitudes the majority have towards those who are *different*. Regardless of whether you keep your blindness a secret or not, you still have to run the same foot race of trying to fit in and keep up so as not to seem lacking or inferior and/or to take away the attention that might be drawn to the fact that you're *different* from the rest. Where you have to be strong in enduring the notions and stereotypical attitudes is overcoming your own frustrations of running the foot race. as for how to overcome this problem of keeping your disability a secret, the disabled person's parents and other support networks should be taught not to be ashamed of the disability, and, in turn, teach the disabled person not to be ashamed as well. If the disabled person has good support networks that emphasizes not being ashamed of who they are and not to hide secrets pertaining to their disability, and those support networks also teach the disabled person that everyone, regardless of being disabled or not, has limitations as well, then the disabled person gains the confidence he/she needs in being able to be strong and find the niche of people they feel most comfortable in. Likewise, the disabled person, themselves, has to also be the one to accept their disability, not hide their disability, and accept that they will have limitations like any other human being does. In short, it takes both sides to work together, as both sides are equally important. Your parents, peers, and whatever other support networks you have to help you in coping with and accepting your disability can only do so much. You as the disabled person have to take own initiative. as they say, "you can lead a horse to water, but you can't make him drink." In other words, you can accept the person's disability and help them accept it, and you can teach them to like themselves as a person, but they, too, have to accept their own disability as well and like themselves for who they are as a person.


Linda Minnesota USA