Braille Literacy: For the Love of Reading, A Mother's Struggle with America's Special Education System
Donna W. Hill
May 25, 2009
When we hear stories about young men like Jordan, we are all proud and perhaps a bit relieved that the future is in such intelligent, gifted and generous hands. The fact that Jordan has done all of this as a blind person is not the amazing or miraculous part of the story. In fact, if you get too caught up in that, you'll miss the point that he and his mother, Carrie Gilmer, want to get across: blind people can compete with their sighted peers, when given the tools and encouragement to do so.
There is, however, something which is extraordinary about Jordan's story. It involves what his mother had to go through to get him an education in the first place. Carrie, who has been president of the Minnesota chapter of the non-profit National Organization of Parents of Blind Children (NOPBC) since 2004, is working to stop what happened to her and Jordan from happening to other families. http://www.nfb.org/nfb/Parents_and_Teachers.asp
Unfortunately, her story is all too common. The result is lower achievement, dependence and the need for tax-payer support of unemployable blind adults.
Braille literacy is declining. Only ten percent of America's blind children are being taught to read and write Braille – down from fifty percent in the '60s. Braille's significance can be glimpsed in two statistics. Only thirty percent of working-age blind Americans are employed, and over eighty percent of them read Braille.
There are three major areas in which a person with low vision may need to make adjustments: literacy (reading and writing), orientation and mobility (getting around) and manual activities (everything from cooking and sewing to doing the laundry and woodworking.
Does the thought of a blind person cooking bacon or using a power saw make you cringe a little? There are blind cooks and carpenters who do these things every day. What is truly scary is when low vision students are expected to do them without learning the non-visual skills which make the safe accomplishment of these tasks possible.
Sight is a powerful sense. People are naturally inclined to "look" even when their vision is unreliable. One of the biggest challenges of educating low vision and legally blind children is knowing when to stop encouraging them to use their remaining eyesight. Should you teach them Braille when they are reading large print half as fast as their fully sighted peers? Maybe at a third the speed? What about at a quarter of the speed, or when they're getting headaches and not having time for friends and hobbies? If the child's vision is well beyond the limits for legal blindness and the child has a degenerative condition, do you teach Braille early, taking advantage of the increased tactile sensitivity in children which makes learning Braille easier in childhood?
The Special Education system in the US is so biased toward using faulty eyesight that children are made disabled not from their eye condition, but from the choices that force them to settle for substandard achievement rather than learn non-visual skills. Year after year from the time Jordan was in kindergarten, Carrie struggled with a rat's nest of scenarios which threatened to hold her son back, limit his potential and rob him of his childhood. From not knowing how to evaluate a child's usable vision and refusing to provide adaptive equipment, to judging his potential against what they thought was possible for blind kids – i.e. not much -- and sabotaging her efforts, the Special Education system has given her an uphill battle.
Jordan is legally blind. He has a degenerative condition called retinal cone and rod dystrophy, which will probably take the little sight he has eventually. Carrie didn't know there was anything wrong at first.
"He liked to get close to things," she says, "but many kids do."
Jordan was also driving his tricycle into the curb. When she expressed concern to his pediatrician, Carrie's suspicions were brushed aside as a mother's worry. Not until he was about to attend kindergarten did she learn the truth.
"It was the daycare center at the Y where I was working out," she says, "They mentioned it and I insisted that the pediatrician send him to an eye doctor."
Carrie remembers the eye doctor frowning and saying, "He has an awful lot of vision loss for his age." Jordan was sent home with glasses for his astigmatism, which didn't help.
When a specialist finally diagnosed Jordan's condition, his vision was 20/400 – worse than legal blindness which is 20/200. The doctor said there was nothing they could do and that he would call the state services for the blind to inform them.
"I cried for twenty-one days," says Carrie, "I couldn't understand. How could he be blind without me knowing? How could he be blind and still see the McDonald's sign?"
Like most of us, Carrie had little personal experience with blind people, and her impressions were not favorable.
"When I was three years old, my grandparents took me to visit a couple they knew. The husband had lost his sight," she remembers, "He was really grumpy and barking orders at his wife."
Other than that, she knew of Helen Keller, Ray Charles, the Sidney Poitier movie "A Patch of Blue" and that some blind people could string beads. She believed that blind people had little chance of living independent, productive and happy lives.
"I realized that my image of blindness was a horrible one and it hurt to think that people would think that way about Jordan," she says.
A Gift From Beyond the Grave
In her pain, Carrie began to notice that something didn't add up. It was the difference between her impression of what blindness meant and the bright little boy she knew.
She had just moved and was unpacking a box of literature left by her late grandmother. On top was something from the NFB. Her grandmother had a secret. She had lost enough vision to be legally blind, and she had made donations to the NFB.
"The word 'blind' just leapt off the page at me," says Carrie, "I read the NFB books "Making Hay" and "What Color is the Sun." They made me stop crying and gave me hope. Then, I made my first big mistake."
Her mistake was that she assumed the professionals at Jordan's school would also have a positive attitude about blindness and would get Jordan the tools and instruction he needed to reach his true potential.
"I should have called the NFB right then and there," she says.
In kindergarten, it seemed as though Jordan was on the right track. He had a Braille instructor with forty years' experience. She worked with Jordan for half an hour after school four times a week. She said he was picking it up quickly and was tactually gifted. The school said he was doing well.
Carrie didn't realize that they meant doing well "for a blind person." Only much later did she understand that to say that Jordan was tactually gifted, represented a sighted bias, and that even that first teacher had mythical ideas about blindness and the sense of touch.
"It's people's ability to use other senses not the strength of those senses," she says, "People don't realize how much they are actually using their other senses. They don't spend time analyzing what they do. I touched the kitchen counter one day after wiping it off and I realized that I could feel that it wasn't as clean as it looked. Also, they don't realize how often they are wrong about what they see – a person 'looked' nice, the ice 'looked' safe."
Sighted bias notwithstanding, Jordan's first Braille teacher wanted Jordan to learn Braille and wait at least until forth grade to decide if he would be able to read well enough using print. She told Carrie they would be gradually adding Braille into his school day. As she retired, she gave Carrie a prophetic warning.
"She told us to make sure that we held the next teacher accountable, because there were 'different philosophies.'"
The Fight Begins
In first grade, Jordan's new TBS (Teacher of Blind Students) wanted to teach him to use an abacus for math and work on orientation and mobility (OM). Suddenly, the thirty-minute sessions were no longer solid Braille instruction. In addition, the quality of the instruction changed.
"She wanted to make Braille fun, implying that it wasn't fun," Carrie remembers, "They just played Yahtzee and other games that were not even Braille-based. She didn't think Jordan needed to use Braille during the day and wouldn't really need it for a long time."
Jordan, who didn't understand why he needed Braille, began to subtly fall behind. Carrie's other two children had been fluent readers by then, but Jordan was a very slow reader and didn't enjoy it. In first grade, his print reading speed was twenty-five words per minute and ten in Braille. She thought he needed more Braille instruction, but the teachers didn't.
Carrie was worried, however. It seemed to her that Jordan would be better at Braille if he had some Braille books and was being encouraged to read them. She complained at the end of that year to the Director of Special Education. For five weeks, they gave him some Braille instruction twice a week but no books.
"They didn't even mention that NLS has Braille books," Carrie says, "I assumed I had to get them from the school."
People with print handicaps, including sight loss, dyslexia and other physical and learning disabilities, can borrow Braille and recorded books from the National Library Service for the Blind and Physically Handicapped: http://www.loc.gov/nls/
In second grade Jordan was having more problems getting around. He was hesitant about the ground in front of him. In gym, he was told to sit by the wall so he wouldn't get hurt.
"He still wanted to hold my hand at seven!" Carrie remembers.
Jordan had also stopped interacting with his classmates. Carrie began to question the decisions the school was making. She wanted Jordan to have Braille in the classroom.
In a decision based on convenience and the cost of bussing him home, the school announced that they were going to remove him from science and geography classes for special instruction instead of teaching him after school. Carrie asked how this could be a good thing educationally, when he loved those subjects. She was afraid that would make him dislike Braille.
"He liked the pictures in print books, and I didn't want him to get a bad attitude."
They then said they could teach him Braille during reading class, but Carrie believed that Jordan would still be missing something. She wanted after school Braille instruction plus some during school. In school, Jordan received only 5 minutes of Braille spelling lessons a week and no Braille books.
Jordan was alone at lunch and not mingling. The Vision Department kept saying that Jordan could see up close and was doing just fine. They recommended against adaptive physical education because "it's for totally blind kids and they don't do that much anyway." Carrie's relationship with the Special Ed staff broke down when they suggested that Jordan join a support group for behavior problems.
A New Way of Looking at Jordan's Progress
Carrie learned that the school secretary had raised two blind children. Like Carrie, she had experienced problems with the Special Ed department. She gave Carrie a copy of the NFB's "Future Reflections" magazine. The article "Is Your Child Age Appropriate" by professional educator of blind children ruby Ryles
made Carrie understand that she was the expert about whether her son was on track based on his own potential. http://www.nfb.org/images/nfb/Publications/fr/fr11/Issue5/f110502.html
Carrie realized that the answer to the article's question was "no," if her expectations for Jordan were the same as they would be, if he were sighted. She finally made the call she should have made years before. Judy sanders, at the NFB of Minnesota told her how to get Braille books and stressed the importance of expecting Jordan to keep up with his class. Carrie entered Jordan in the "Braille readers are leaders" contest: http://www.nfb.org/nfb/Braille_Initiative.asp
"The Vision Department at Jordan's school treated me like I did not know what I was talking about. They considered his vision to be good and wanted him to use it every second," says Carrie, "They acted like my husband and I were trying to make Jordan blind."
Jordan was still not interacting with his classmates. The school suggested having the class cover their eyes with wax paper to experience what Jordan could see. Carrie, however, knew that this didn't represent Jordan's vision. Judy, who is also blind, offered to come to school that spring to give Jordan his Braille certificate and talk to the class about blindness.
When Carrie picked Judy up at the bus station, it was her first experience with a competent blind person. It was Judy's white cane that drew her attention.
"She got out of the car by herself and just walked along with me like anyone," Carrie says.
Everyone loved Judy, including Jordan. Carrie wanted more time to talk about the NFB's philosophy and offered to drive Judy home. Judy encouraged her to go to the NFB's annual convention, saying they would learn more in a week than she could tell her in years.
For financial reasons, Carrie was reluctant to attend the convention. She was a stay-at-home Mom and her husband was a teacher. But, the NFB of MN sent them, and it changed their lives. Carrie learned about the slate and stylus – the traditional method for writing Braille, which Jordan had not been taught. Also, Jordan had been walking all bent over and the school had never even mentioned using a cane.
For third grade, Carrie wanted Jordan to learn to use a white cane and to write Braille. She again asked that he have Braille books in class. The TBS didn't want to teach the slate and stylus until forth grade. Carrie was overwhelmed.
"There were so many issues and so much opposition from the school," she sighs, "You have to ask yourself, 'Which battle do we fight?'"
That year, the only time Jordan read Braille was for thirty minutes at night when his mother insisted. He was still falling behind. Forth grade was no different. When Jordan was ready for fifth grade, Carrie demanded that all of his textbooks be in Braille.
"The TBS banged her fist on the table and said, 'Whatever. He's never going to be a Braille reader.'" Carrie says, "She had been telling Jordan, 'Your parents are the ones who want Braille,'"
Jordan's print reading was still faster than Braille. Braille was harder for him, and Jordan didn't understand that that was because he didn't use it.
With his face down on the page, Jordan could read thirty-five words a minute. His classmates read eighty-five to ninety or more. Jordan didn't think of reading as a physical struggle, but he didn't like to read. That troubled Carrie. Her family loved reading. Jordan was never a kid to talk back, argue or have tantrums, but he never read for fun, not even comics.
Ironically, the school obtained Braille texts for Jordan in fifth grade, but the teacher didn't use textbooks, preferring work sheets. They didn't have work sheets in Braille, so Jordan still wasn't reading Braille during the day except for his weekly spelling list. If the class was reading a novel, it wasn't until they were on the last chapter that Jordan received the Braille version.
By that time, Carrie was panicking and convinced that Jordan needed daylong Braille instruction, and asked for all Braille for sixth grade. The TBS said that would ruin him and that he would get all d's and wouldn't be able to keep up.
She was told, "You're dooming him. You're going to traumatize him by going to all Braille and failure will be the result."
Gym class was still a disaster. Rather than using audible game balls, which emit a continuous sound enabling blind kids to catch or hit them, the class was forced to stop the game to give Jordan the ball. He was still sitting in the corner most of the time.
In sixth grade, the TBS wanted to pull Jordan from reading class for Braille instruction, to learn to use jaws (a screen reader program that works with Windows) and the Nemeth Braille Code for mathematics and science notation. Carrie didn't want him to miss reading because he would miss out on class discussions on novels. She allowed the TBS to pull him from gym class, reasoning that it was better for Jordan to miss gym than to miss reading class. She enrolled him in the YMCA swim teem, which was four nights a week plus Saturday meets, as well as bowling league and ski club.
"At the Y he was really participating."
That was the first year Jordan had Braille textbooks. An amazing thing happened. At the beginning of the year, Jordan's Braille speed was twenty words a minute, and his print thirty-five. In two months, his Braille speed was up to forty-five with print still at thirty-five. Jordan suddenly began to prefer reading Braille.
The victory was short-lived. Jordan's Braille reading speed plateaued at forty-five. In 7th grade, Carrie asked for them to work on his fluency. She was told that Braille readers don't read more than sixty words a minute. This is only true, Carrie realized later, when they get haphazard instruction. Instead of working on fluency, they were surfing the internet and using a digital Braille note taker called Braille note, both of which the teacher was teaching herself at the same time.
Also, Jordan was reading Braille with only one hand and he was a terrible "scrubber" going back and forth over words he had just read before proceeding to the next word. Carrie wasn't sure if this was due to poor instruction or a reading problem. She begged for a reading specialist, but was told that Jordan didn't need one.
Most of Jordan's reading was done on the Braille note, a digital device with an eighteen cell "refreshable Braille" pad. It's the Braille equivalent of reading one line at a time; each cell is one letter or symbol. This meant he wasn't reading long sentences. Even with that, Jordan had no leisure reading time because he needed more time for school work. Even with a sighted reader, there was little time for leisure reading.
Again she was faced with a dilemma. Do you drop expectations for homework to give him leisure reading? They cut Jordan's homework, so he didn't get the curriculum he was capable of, but had some time for leisure reading. Carrie was still worried about the quality of his Braille instruction. He worked with the TBS one hour every other day, but the TBS focused mainly on the computer.
The Hard Lessons of Middle School
In the summer before Jordan entered seventh grade, Carrie took a job at the NFB training center, Blind Inc., in Minneapolis, and enrolled Jordan in Buddy camp. http://www.blindinc.org/
She learned about non-visual techniques for doing all sorts of everyday activities. She talked to Jordan's seventh grade teachers about non-visual techniques for science, suggesting that the teachers speak with the people at Blind Inc. Her suggestions were rebuffed.
That year, he would have Home Economics and Industrial Arts. Sewing was first. Their solution was for Jordan to get fabric and thread in highly contrasting colors. Carrie, however, knew blind sewers didn't use that. The TBS finally agreed to talk to Blind Inc and then said the school would buy the adapted sewing equipment, which included a sturdy needle threader and a magnetic strip for keeping seams straight while using a sewing machine.
Though they hadn't addressed adaptations for Industrial Arts, Carrie was confident that they were finally on the same page. She listened with delight to Jordan's stories about how well he was doing with his sewing project, a pair of shorts. Jordan received an A. His Mom was impressed.
"I got a D," she remembers.
When Jordan brought the shorts home, however, the truth of what had really been going on came out. Upon inspection, Carrie noticed seam marker lines and realized they had made him do the project visually. Jordan never received the magnetic guide that the school promised they would buy or the sturdy needle threader. He began to cry and explained that they had tried using duct tape, but he couldn't feel it. So, the teacher had drawn lines with a magic marker. In order to see it, Jordan had to tilt his head and press his forehead against the sewing machine. He had threaded a needle one time using the commercially available foil needle threader, but it took so long that the teacher ended up doing it.
"I was in complete shock because he had been saying that it was going great," she recalls.
Carrie was too angry with the TBS to call. But, things were getting more dangerous. No accommodations had yet been made for Jordan's upcoming Industrial Arts class, and he would be expected to use power tools including a ban saw and radial arm saw.
Then, there was the snow tubing trip. Despite medical evidence to the contrary, the TBS had convinced the classroom teacher that Jordan wasn't really blind, so it hadn't even entered their minds that they had a blind student. In addition, Jordan's OM teacher had been encouraging him to trust his vision. He came home with two black eyes.
Carrie asked Jordan what he thought his vision was good enough for, and he said crossing the street. They soon had an experience that showed Carrie that, even though he didn't realize it, Jordan was relying on his hearing to cross streets not his vision. They were returning from the zoo and crossing at a congested corner. Carrie thought it was safe and started crossing between two parked cars. Jordan yelled to stop. She realized that he had been crossing by sound and did some experiments to prove it to him.
When Carrie called the Industrial Arts teacher, he was actually glad to hear from her. He was concerned about how Jordan would handle dangerous equipment. He said that all the TBS had said was to get the course work to her so she could Braille it. Carrie invited him to visit Blind Inc. He spent hours with their wood working teacher and got excited about the possibilities.
NFB training centers use "sleep shades" so that students are able to resist using their faulty vision and develop reliable non-visual skills. The Blind Inc. instructor suggested painting the shop glasses black so Jordan wouldn't be tempted to lean into the machines to see. But when the IA teacher in his enthusiasm mentioned it to the TBS, she called Carrie, saying that using sleep shades would endanger the other students. Although she had no personal industrial arts skills, the TBS wanted to assess Jordan's vision on each piece of equipment.
"Jordan likes to use his vision," she told Carrie, who finally comprehended the depth of sighted bias that this whole team had had. Every decision was based on it. It was so ingrained in their thinking that they were more comfortable allowing a legally blind kid to try to see what he was doing with a power saw than to permit him to use techniques that are designed to allow a person to safely use power tools without sight. They even believed that the other students in the class would be safer.
The TBS insisted that using sleep shades was too dangerous and was an insurance issue. Carrie countered by pointing out the danger that the district had put Jordan in with the snow tubing trip and his sewing experience. She told them she would pull him from class if they didn't go along with the non-visual techniques.
They realized that Carrie had grounds for a law suit and had many meetings. Jordan is half African American so they through a diversity specialist onto the team. They agreed to conduct an experiment. The team would tour Blind Inc. as well as another training facility that didn't insist upon using sleep shades.
This took weeks and class was going on, so they agreed that Jordan would participate except for using power tools. The Blind Inc. woodworking instructor volunteered to do the project with Jordan.
At the end of seventh grade, the team agreed that Blind Inc. had the superior and safer technique using sleep shades and Jordan would use them at the higher level IA course the following year.
Finally, Some Competent Braille Instruction
Between seventh and eighth grade, Jordan attended "Circle of Life," a science camp held at the Jernigan Institute at the NFB's national headquarters in Baltimore. The NFB of Minnesota was having its convention in the fall, and they asked him to speak about it. Jordan wrote a speech and read it at the convention.
"It was painfully slow," Carrie remembers, "Everyone was shocked at his poor reading skill."
She had been asking for help from others but they didn't know how bad it was until then. Carrie brainstormed with people in the NFB. She learned about the two-handed method of reading Braille, in which the left hand reads the first half of the line and then jumps to the next line while the right hand finishes. Carrie realized that Jordan had never known what fluency felt like. She remembered that her older kids had followed along reading print while listening to tape and tried that with Jordan and Braille.
Jordan was getting into advanced classes but his mother believed he needed intense Braille over the summer between 8th and 9th grade.
"He doesn't need it," the TBS told Carrie, "He's getting straight A's."
Carrie pointed out that it was taking Jordan 4 hours to do what others do in an hour.
"Things got nasty," she recalls, "The Director of Special Ed said my concerns were 'insulting to the staff.'"
She started writing everyone including the school board and superintendent. Only one board member called acknowledging that she had been treated horribly, but insisted that they couldn't provide intense Braille training. Minnesota State Services for the Blind, however, sent Jordan to the adult training program at Blind Inc.
When he started, Jordan's Braille speed was forty-five to fifty words a minute. For the next six weeks, the staff taught him the two-handed technique and told him he could read more than 60 words a minute. Jordan was motivated. He was doing two hours of leisure reading daily; his speed was up to seventy-five.
For ninth grade, Carrie told the new TBS that they only wanted materials from the school; any instruction would be at Blind Inc. Between ninth and tenth grade, Jordan went to the Louisiana Center for the Blind, another NFB facility: http://www.lcb-ruston.com/
"He really needed to get away from his parents and gain more independence," she explains.
Jordan started reading everywhere. In tenth grade, his speed was in the eighties for leisure reading. For his honors courses it was in the sixties.
Carrie says that Jordan's high school principal and teachers have been wonderful. They have high expectations, and the new Special Ed Director understands where they've come from. Carrie wanted a cheerleader and coach, someone to motivate Jordan and encourage him and work on fundamentals. Every year since second grade, she had been asking for a reading specialist. She asked again in eleventh grade, and the Special Ed Director agreed.
Carrie requested that the reading specialist sit with her back to Jordan and listen to him read, not knowing if he was reading print or Braille. The reading specialist determined that Jordan's print reading was full of errors and hesitancy and his Braille was much better with no deficit. She said it was about practice and encouragement. She gave them ideas she used for print readers.
"By that time," Carrie says with a laugh, "Nobody wanted to work with me, though they all loved Jordan."
But, the new Braille teacher did want to work with Carrie. Carrie didn't know why she should trust this new teacher. The new teacher agreed to tell Carrie exactly what they would be working on.
"She's been teaching him three times a week for two years. If books came in plastic, he'd be reading in the shower!"
Now, as a senior, Jordan reads Braille at More than one hundred words a minute. For leisure reading, he's up to 125.
Jordan will attend the University of Minnesota, Twin Cities campus next fall. He is interested in constitution law, human rights and political science. He says that, if he makes it to the Supreme Court, he's going to re institute wigs.
"He'll be OK," his mother says with tears of relief in her voice, "125 is OK. He can still increase it and he can survive in college and he enjoys reading and chooses to do it. If he had gotten Braille all along, maybe he'd be at 200 words a minute. Every time he reads, I thank god I hung onto that. His print reading speed never improved. He wouldn't have made it without Braille."