Future Reflections Special Issue: Low Vision and Blindness 2005
by Carrie Gilmer
Editorís Note: Carrie Gilmer is president of the parents division in Minnesota and a national board member of the National Organization of Parents of Blind Children. She works at BLIND, Incorporated, the NFBís adult training center in Minneapolis. The text below is the speech she delivered to thousands of members of the Federation at the 2005 annual NFB convention in Louisville, Kentucky. In her cover note transmitting the text of her speech, Carrie commented that, while she was profoundly touched and humbled by the reception her remarks received, she continues to feel anger and frustration that, despite the hard work of parents and consumers, her familyís story of roadblocks and resistance from the educational establishment continues to be echoed in school districts across the nation. This is what she said:
Good Morning. In Minnesota since last fall I have been affectionately known as President Carrie--the one who won the election. For a long time before that I was known lovingly and simply as ďJordanís Mom.Ē I speak today for my son and those like him who cannot vote and do not yet have their own voice. This is what parents do--speak and, if need be, fight for their children while teaching them to speak and fight for themselves. I thank Dr. Maurer for inviting their voices to be heard today.
Sometimes the problems we face as parents of blind children and the obstacles placed in the paths of our children seem so large and unending that it feels like trying to empty the ocean with a teaspoon. It seems like an impossible dream that someday our blind children will be encouraged, educated, and measured in the same way as sighted children are.
In 1968 Dr. Kenneth Jernigan--an extraordinary leader and an extraordinary human being--was given a special citation by the president of the United States because he had so revolutionized services and training for the blind in the state of Iowa. His success was in turning the worst rehabilitation program in the nation into the best rehabilitation program in the world, and he did it in just ten years. When Harold Russell, chairman of the Presidentís Committee on the Employment of the Handicapped, presented the award to Kenneth Jernigan, he made (in part) the following statement, ďIf a person must be blind, it is better to be blind in Iowa than anywhere else in the nation or in the world. The story of the Iowa Commission for the Blind is the story of high aspiration magnificently accomplished--of an impossible dream become reality.Ē
That was nearly forty years ago in the state right next door to mine. It seems that such great advances two generations ago would by now mean great advances for us too--just a few hours to the north. And I believe, if geography had been the only barrier, what I have to say today would be quite different.
As President of the Minnesota Parents of Blind Children and as a new board member of the National Parents of Blind Children, I am deeply concerned with the way things are if you are born blind or become blind as a child. If you must be blind as a child, what does that mean? What does it really mean when we get right down to where the rubber meets the road for each individual child? That is how we know how far we have come and if the education is effective enough--the answer also lies in the results where the rubber meets the road.
No matter how great the philosophy sounds or what amount of funding and effort go into the policies and training--the philosophy and training have to meet the driving test. If a particular car model has crash after crash, for example, we know that basic things on the car obviously have to be completely redesigned. We donít merely change the paint or upholstery. Certainly we cannot be less willing to throw out the educational designs and philosophies that can end in the crashed and run-over lives of our children. Iíd like to share with you how the rubber has met the road at my house and in my son Jordanís life in particular.
After many months of tests and waiting, Jordanís eye doctor called to tell us that Jordan was well within the legal definition of blindness and there was nothing he could do. He acted as though his diagnosis meant fatality for a normal life and a future doomed to gloom. Initially as parents we feared the same thing. He wished us good luck and referred us to Minnesota State Services for the Blind (SSB).
We called SSB, and two months later we had a home visit from a blind SSB counselor. He told us not to sit Jordan down and have a big talk about being blind: we shouldnít make an issue of it. He encouraged Braille whenever Jordan entered school(which was not for another seven months). He gave us a monocular that was at least thirty years old and worked at an angle like a periscope. He spent half of his time with us talking about his own negative experiences as a blind child and the fact that he still struggled with personal embarrassment over being blind. He had a folding cane, but he never mentioned whether Jordan should have one, and we didnít ask. We didnít ask a lot of questions. We didnít have a clue where to begin. We had really been hoping--counting the days until he came--that he would tell us everything we should do. He was very kind but said there wasnít much he could do and referred us to the local school district. My husband and I knew two things for sure when he left: 1)SSB was not going to help us, and 2) We did not want our son ever to be embarrassed about who he was.
During this time I had read a few of the NFBís Kernel Books that my grandmother had given me. I donít know why I didnít contact the NFB at that time except that the people in the stories seemed as far off as the hopes they had kindled in me for Jordanís future. I called the school district instead.
The vision department woman from the district was very nice, and she advocated Braille. But, since Jordan was ďdoing fine,Ē that is, he wasnít bumping into things, everything could wait until school in the fall. She didnít think she even needed to see him. Things werenít as bad as we thought. She had been teaching Braille for forty years--a real expert!
Jordan Richardson has adopted his parent's positive attitude toward the use of sleepshades as a learning tool. At the 2004 Circle of Life Science Academy, he proudly demonstrates his nonvisual skills as he dissects a shark under a sleepshade.
So we went on as if nothing were different, except now we knew--we knew why he wasnít running, why he walked with anxiety. We noticed more that he played in small areas, chose not to ride toys, and leaned so close to things. But we didnít understand really what he could and could not see. The doctors couldnít describe it or tell us how he saw things. Jordan couldnít describe it, and he had no comparisons. We all wondered. What did ďlegally blindĒ really mean anyway? Jordan especially had a lot of trouble with the legal part. Over the years we have found most people donít understand what ďlegally blindĒ means. They assume you can see okay--blurry perhaps--but you can get by and tell what things are. They assume legally blind people all see the same, too, as if it is one specific acuity. It was confusing. The doctors all made it sound serious and severe, but the school vision staff made it sound not so bad.
When kindergarten came, our forty-year expert said Braille was all that Jordan needed. And he didnít really need it now--it was just easier to start now in case he lost vision later. She never mentioned anything else--no cane, no explanation to us or the classroom teacher of what a 95 percent vision loss would mean in the classroom. All he had to do was to get up close whenever he wanted. As the year went on, everyone told us how great he was doing. He seemed happy everyday. He insisted on wearing a tie everyday--to kindergarten! And so he did. He was serious about going to work. He took to reading easily, it seemed, with absolutely equal ease in large print and Braille. At the end of the year he was picking up Braille so easily the Braille teacher told us she thought he was tactually gifted. We were very proud. Still--he had less than 5 percent of normal vision. Could a person really get by on that?
That Braille teacher retired, so we got a new one for first and second grade. This Braille teacher thought Braille should be fun--not only that, but it needed to be fun. That is, there was something about Braille that was very much un-fun, so one had to do quite a bit of propping it up and turning it into a game to hide the fact that Braille was not something you would like to spend time learning. So they played a lot of Yahtzee and the like. Jordan began to view print as reading and Braille as a game. As the fun increased, his skills decreased. Moreover, the Braille teacher made no attempt to integrate Braille into the classroom.
By now, my husband and I were realizing that, even if Jordan didnít lose any more vision, the print in chapter books and newspapers would be too small for him. The slow speed of print seemed more limiting than Braille would be. It also seemed fatiguing and unhealthy to be straining and bent over all day. We were starting to be extremely serious about Braille.
By the end of second grade all kinds of problems were popping up besides his slow progress in Braille. Jordan almost always played alone on the playground. He didnít approach or try to enter groups in his classroom. He ate lunch alone. No one encouraged tactile exploration for him beyond the usual for all kids. No one identified themselves when speaking to Jordan in any part of his day. No one mentioned a cane, and he walked with great anxiety over the distance just in front of him. No one mentioned a slate and stylus or the Library for the Blind. He was frequently made to sit on the floor by the wall in gym class so he wouldnít get hurt. Once or twice a month he had O and M instruction in how to use his vision to know the cardinal directions and the layout of his perfectly square, small school. The Braille teacher advised us to educate the class about Jordanís vision by having them look at blurry photographs of deer and by having the class put wax paper over their eyes and look around the room.
We knew there were gaps. Something was not right. We didnít comprehend yet exactly how much. But the vision, O and M, and phy. ed. teachers constantly told us how great he was doing and how he could do what all the normal kids could do--and in the normal way (meaning of course, visually). We didnít realize yet that they meant he was doing great--for a blind kid. The regular classroom teacher was concerned, however, and realized that the vision department had helped us no more than her. She told me to seek out a part-time secretary at the school who had raised two blind children. The secretary didnít seem to want to talk, but she did give me two copies of Future Reflections and advised me to look for expertise there.
I read the articles by Ruby Ryles and Barbara Cheadle and others I donít remember. I was stunned and shocked and mad at myself and furious with the Vision staff. I was confounded and dumbfounded. First I felt stupid and like the worst mother in the world. I mean, how could I have had a blind son and not know it? Never mind that neither the pediatricians nor other family members had realized it either--I was the mother. I should have known. And now, after I had been told he was legally blind, I had bought into the illusion that he could make it using less than 5 percent of normal vision. Now here was all this perfectly reasonable information--why didnít the school tell me? Didnít they know?
It seemed I had two choices--I could take a guilt trip around the world with nightly pity parties, or I could get busy and educate myself and make things right for Jordan. I called the local affiliate of the NFB because I figured (wrongly) nationally in the NOPBC and the NFB they were pretty busy and probably too high up and official to talk at length to a desperate and confused mother way out in Minnesota. Judy Sanders took our family under her wing out in Minnesota, and the affiliate helped send Jordan and me to the national convention in Atlanta.
Merry Noel gave him a cane; Joe Cutter told me why Jordan should use it and showed him how. To this day Jordan still uses Joeís explanation to him that this was his ďthird eye on the groundĒ to explain to little kids what his cane is for. Roland from Louisiana told me to make Jordan take it everyday and use it, and to make it as simple as ďwear your shoesĒ or ďget your coat.Ē Jordan at not quite nine years old had been walking bent over like a ninety year old man. As we walked around Atlanta, he walked erect for the first time, let go of my hand, and went exploring. I realized his spirit had been as bent over as his posture had been. I sat down on a curb and wept.
There I also learned about the slate and stylus. I heard about normalcy and age/ability-appropriate expectations. Much of that convention went over my head, but one thing stuck over all. I learned I had a blind son who could quit worrying about being legal.
In third grade he showed up at school with a cane. You never saw anyone scramble so fast to write up IEP goals. Jordan also got a new Braille teacher; she resisted the slate and stylus. She reluctantly taught Braille. She avoided nonvisual discussions and insisted it wasnít necessary. She refused to call him blind--he was visually impaired. She did not integrate Braille into his classroom day.
About this time my husband and I went to a local state convention. We were hoping to meet other parents. We were the only parents there. We were elected vice president and treasurer! I felt silly because I didnít know anything, but I felt responsible to learn and learn quick. Bruce Gardner was the national representative at that convention. He spent a long time talking to my husband and me. He made a lot of sense and only seemed a bit over the edge on one thing--he said he read some NFB material every day. Yes, every day. I didnít get it.
Then Jordan began going to Buddy Camp. The whole family started to get to know a number of successful blind adults. It was in Buddy Camp that Jordan first felt, deep inside, that it really was okay to be blind. It was the first time that the people teaching the skills also used and believed in them. It began to make a life-changing difference for all of us. From observing the positive changes in Jordan and seeing the nonvisual techniques used efficiently by blind adults, we became more determined to see that Jordan became skilled in alternative techniques. Also the more time we spent with successful blind adults, the more comfortable we became with blindness and viewing Jordan as an independent blind adult. We became more convinced that, if Jordan had proper training, what would limit him would be the same things that limit all human beings, that is, was he lazy or not, organized or not, educated or not, talented or not? Did he have money in his wallet or not? Did he have opportunity or not?
In fifth grade we insisted all of Jordanís textbooks be in Braille. The Braille teacher rolled her eyes at us and shook her head. Like a curve on a graph, we can look back and see Jordanís competency in Braille reading relate to the attitude of those instructing him. He ended up not getting Braille into his day much in fifth grade either.
Middle school was coming now, and we believed it was critically imperative that he become more fluent, fluid to grade level in Braille. It was only going to come from constant use and good instruction in proper techniques and encouragement and instruction on changing poor habits from someone who believed Braille was equal to print and from someone who believed Jordan should be a primary Braille reader. We hoped we would find such a person in sixth grade. We insisted on complete Braille immersion. No print, except at home for incidental or leisurely reading. The fifth-grade teacher predicted trauma and failure would result from our plan.
With such dire predictions, off to middle school he went. Every worksheet, every textbook, every notice came in Braille, and he began using Nemeth code in math. Jordan ended sixth grade having made the ďAĒ honor roll three times with seven classes. Nothing was shortened or turned in late. He and I both worked very hard. I read a lot to him because his speed was so slow, and I tutored him in math for an hour, sometimes two, every evening. He spent two to three hours every evening on homework. He did not argue or complain any more than I did. He understood that, if he didnít keep up in sixth grade, he wouldnít be able to keep up in high school. He also became more social and started playing the trombone. He auditioned and participated in the schoolís spring production of Music Man. So much for the dire predictions of the former Braille teacher.
Overall his growing successes were mostly due to another two summers of Blind, Inc.ís Buddy Camp. The experiences there had reinforced and built on his belief in himself and the methods he needed as a blind person. As important, attending local NFB meetings throughout the year led to the deepening of friendships. This also gave him frequent and consistent exposure to the normalcy and competency of other blind people. Sharing common experiences of the misconceptions of others and hearing how blind adults were taking control of their own futures empowered Jordan in a way that nothing or no one else could. The instruction he received in just four weeks per summer gradually brought his skills closer to true age-appropriate performance. The solidifying of skills reinforced his confidence, and his confidence led to the desire to practice and improve his skills. By seventh grade he was coming to know himself, and he wasnít going back. He was forgetting he had ever felt uncomfortable about blindness. He began to bloom.
We continued the tug-of-war over nonvisual techniques with the vision teachers for everything besides Braille. Jordanís vision is useful and convenient for some things, but the visual for him requires some modification over 98 percent of the time. Of course he should use his vision to its utmost. We never understood the concept that you couldnít enjoy both--or have both be useful. But the truth is that vision usually does not give him all or the most accurate or the easiest-to-obtain information. And sometimes relying on his vision is actually dangerous--such as in crossing the street.
We had some major events at the end of seventh grade that demonstrated to us once and for all just how deeply warped and ingrained the philosophy of the Vision staff in our district is. Iíd like to share some of these issues with you briefly.
The O and M person bought a Geordi for travel and gave Jordan the idea his vision was useful and safe to rely on to cross busy city streets. The regular vision teacher agreed to nonvisual techniques in sewing and then abandoned Jordan and the techniques. She left him convinced the only way he could sew was to press his forehead against the sewing machine, straining to follow a green marker line drawn on the fabric.
The Vision staff gave the regular classroom teachers the impression that Jordanís vision was quite useful --he wasnít really blind. The teachers took him snow tubing--nobody told him when it was safe to go down. Jordan thought he could trust his own vision to tell. He came home with two black eyes--one swollen completely shut--from crashing into another student. When asked about all of these things, the vision teacher informed me, ďYou know, Carrie, Jordan likes to use his vision.Ē
Then, when industrial arts came along, their real beliefs came glaringly to the surface for all to see. The regular shop teacher had no idea what to do with a blind student. We asked him to come down to Blind, Inc., and learn about nonvisual techniques, and he was eager to. The vision teacher didnít think this was necessary at all; she thought Jordan could get by with his vision. The shop teacher, she said, only needed to know he had to get classroom materials to her to be Brailled.
The vision teacher believed Jordan (and all blind people) in every case in every place preferred to use vision--no matter how costly, uncomfortable, inconvenient, or inefficient and no matter how limiting. Any vision was better than no vision at all. It was obvious to us now that this belief colored every decision, every instruction method, and every plan laid out by the so-named vision staff.
At the end of his tour Dick Davis, the industrial arts teacher at Blind, Inc., told Jordanís regular shop teacher to paint Jordanís shop glasses black. The shop teacher agreed. I waited for the phone call. It came.
The vision teacher was very upset. No sleepshades! She said she was worried about the safety of the other students in his class.
ďWhat?Ē I said incredulous.
She had to consult supervisors and lawyers. A whole range of excuses poured out of the phone. It wouldnít be possible; it was too dangerous. She concluded by saying she didnít know how long it would take--maybe the class would be over before she could have an answer. We should just trust her to assess (guess) where his vision was useful, and the teacher could guide Jordan (do it for him) when it wasnít.
My husband and I began to realize that during all those years, while we were being flexible, compromising, and choosing our battles, when they asked us to ignore the little things, to trust them and be patient, it was Jordanís rights and his validity as a blind person, his normalcy and full potential, his independence and freedom that we were compromising and being flexible with. Well, we were done. No more. We knew who our son was, and we werenít going back. We intended to have progress. They had declared war. We were going to man the barricades and prepare to do what we had to do.
By this time I was working at Blind, Inc., as a secretary. I went and stood in the resource room. It was full of NFB literature. A goldmine I had not tapped lay before me. I thought of Bruce Gardner and that I had thought he was over the edge for reading some of it every day. I thought of calling him to apologize. I took a big leap over the edge myself.
Joyce Scanlan, president of the Minnesota affiliate, had been spending hours and hours over the last years teaching me, and so had many others--but I needed more--I was going to war! I began reading Walking Alone and Marching Together. I grabbed a dictionary. I grabbed every speech and article I could find. I found Doris Willoughby and Sharon Montheiís book. I wept and called them both. Shawn Mayo called Peggy Elliot, and Joyce Scanlan called Dr. Maurer. They closed ranks around us and told us to stand our ground. I read Schroeder and Omvig articles and all your Kernel stories. I read 24/7--laundry, dishes, and dust piled up--no time!--I had to read everything. Soon I was reading so much I didnít know who had said what anymore. All the speeches were running together, and they all had a unified message. They strengthened me and gave me the depth of words and ammunition for the exact target--prejudice.
We didnít want strife or confrontation--we wanted Jordan to participate equally and safely in a required course alongside his peers. Then we had the big meeting. Two industrial arts teachers, one vice principal, one assistant director of special education, one special ed. teacher, one Braille teacher, and one diversity specialist were waiting for my husband, Joyce Scanlan, and me.
The Braille teacher and the assistant director of special education would not budge, and they had no intention of listening to us. It was clear that they were there to convince their colleagues that we didnít know what we were talking about. But because their reasons were not based on accurate knowledge, they had to keep changing their reasoning and arguments. The Braille teacher wanted Jordan to use his vision as best he could. She wanted to make a different and separate plan as she guessed his vision on each separate tool. My husband and I knew that this would lead to her determining--as was her history--that no alternative techniques were needed. The classroom teacher could provide guidance. Jordan could get by.
I asked her, if Jordan could not when seated upright tell me by vision alone exactly what was on his dinner plate on any given evening, how he could possibly stand upright and know where a saw blade was using his vision. ďIím not sure,Ē was her reply. When the other people in the room realized Jordan could not tell what was on his dinner plate and could not recognize his own mother a few feet away by vision, they realized that, sleepshades or not, they had better get prepared to have a blind student in shop. What does it mean when the professionals who were to be the experts on blindness and special education were the only ones in the room who would not agree to keep an open mind?
The district agreed to send them all to Blind, Inc., for a tour, then we would meet again and decide. It had come out in the meeting that, in our district (the largest in the state) of 43,000 students and about 100 of them receiving VI/blind Services, no one had let a blind student take shop before. Meanwhile we pulled Jordan from the class. They werenít prepared to teach him safely.
Jordan was strengthened to do this because Dick Davis agreed to spend over thirty hours of his own time to teach Jordan the higher-level projects under shades down at Blind, Inc. If it hadnít been for that, I donít know if we would have been able to hang tight. Jordan said he understood the power tools better under shades, and he wanted to stand up for his own rights--but the fear of not being able to complete the projects like everyone else brought tears to his eyes and made him question fighting for the techniques he knew he needed. The knee-jerk reaction to the shades by his vision teacher had shocked him, and he understood that deep down it was really a visceral reaction to total blindness. He was hurt.
On the last day of school they finally gave us their decision. We had won! Sleepshades are now in his IEP as a training tool, and it is our (his) choice when to use them. I have never met a blind person who needed training on how to use vision. I have never met a blind person who needed help learning to like to use vision. I have met many who needed help understanding when it was not usable. Jordan took advanced shop this year, completely under shades. He began by explaining his use of darkened safety glasses to his peers in the shop class. The shop teacher told us that the other kids really watched Jordan closely in the beginning. But Jordan was comfortable, casual, and performed with skill under the shades. He said that Jordan was highly respected by the other students.
Now nobody even notices anymore. And I am proud to tell you Jordan received an A both terms in this advanced industrial arts class. The A was not given; he earned it with superior work, performed as a totally blind person. I must emphasize that Jordan was comfortable and casual and held a belief in blindness techniques as completely viable because of his previous experiences under shades at Buddy Camp. His shop teachers at school loved the click-rule and were highly impressed with the methods. Because of Jordan two other blind students had the chance to take shop in our district this past year as well. That is some progress where the rubber meets the road.
In fourth grade Jordan had told me that he was popular because he was blind. Think about that. This last year, in eighth grade, he realized heís popular because he is the kid who does the weather, news, and funny skits on the schoolís Friday morning news program. He is the kid who is second chair in the trombone section; who is friendly with everyone; who is on student council; who is comfortable with himself; who is on the A-honor-roll; who helps others with homework; who always has a joke to tell; who has been on the bowling team, on the swim team, and in ski club. He is the kid who is active, confident, positive, polite, and kind. There are about 1,500 students at Jordanís middle school. Once in a while he meets someone who hasnít seen him with his cane or doesnít know him; then he is still the ďblind kidĒ for a moment. But they soon learn he is Jordan Richardson, and blindness is only one of his characteristics.
When Jordan brought his class picture home this year, I noticed
something new. A white cane was in the picture, held proudly across his chest.
I ask you, who imparted that casual comfort to Jordan? Whose philosophy passes
the crash test? I thank God for the National Federation of the Blind.
Iíve been asking people in all kinds of positions across my state to Imagine with us. Imagine a day when it is well to be blind anywhere. Iím just an ordinary mom--but I know that no human rights advance ever took place without regular people giving all they had. Iím not a blind person, but I believe in the normalcy of my son. I believe in the normalcy of all our blind children. I believe in the normalcy of all blind people. I ask each affiliate to wrap your arms around the parents and children in your states as Minnesota has wrapped its arms around us. If we change things for the children, we will change the future. And we will because, as Dr. Maurer has said, we will never give up. What seems impossible can become reality. Every one of you is living proof.