It is a quandary that parents of disabled children grapple with early and often: What is the right balance between teaching them self-sufficiency and making sure they have the special accommodations they need?
As Gov. David A. Paterson ((pictured) has discovered, the way parents answer these questions has a tremendous impact on how disabled children fare in the adult world.
Mr. Paterson, in recent interviews, has expressed worry about leaving the governor’s office and learning to live on his own again, after years of relying on others for a variety of tasks, like guiding him up stairs and reading his mail.
He never learned to read Braille, as about 50 percent of blind children did at the time he was growing up. Instead, he used what little sight he had in his right eye to read with high-powered glasses, attending regular classes in a public school.
That decision was driven by his parents, Basil A. Paterson and Portia Paterson, who were determined to shield him from any stigma and insisted that they would not place young David in special education classes.
The teaching of Braille was far more common in the early 1960s, when Mr. Paterson, now 56, was entering elementary school, according to the National Federation for the Blind. Now, with the development of technologies like software that reads material aloud at high speeds, only 10 percent of blind children learn Braille.
“Sometimes the argument is ‘I don’t want my child to be different, so I don’t want them to learn Braille,’ ” said Mark A. Riccobono, executive director of the Jernigan Institute, the research and training division of the national federation. “On one level there is something to that argument. But in the long term it means they have fewer tools in their toolbox.”
There are no easy answers, of course, about what path is the right one for a blind child.
Sheri Wells-Jensen, an associate professor of linguistics at Bowling Green State University who is blind, said, “I hated it when I got pulled out of the mainstream classroom to do something the other kids didn’t have to do.”
Ms. Wells-Jensen said she eventually came to accept Braille but fully understood why children and their parents would resist, because of the common misperception that blind people have extremely limited capabilities.
“If you buy that cultural stereotype, you’re not going to want to be seen hauling a big old Braille book around,” Ms. Wells-Jensen said. “You aren’t going to want to be pulled out of the classroom to learn Braille.”
Parents like Mr. Paterson’s often go to great lengths to create as normal a life as possible for their blind children. The Patersons searched all around New York City and its suburbs for a school that would not segregate David into special education.
When they finally settled on the Hempstead school district on Long Island, their son’s school had to order large-type textbooks to accommodate him. David learned to read by putting on his glasses and pressing his face close to the page so he could make out the words.
When he tried to learn cursive writing in the third grade, he would stand next to the blackboard to see.
To this day, he uses a pair of high-magnification glasses to read letters and write personal checks. But he is able to focus on reading and writing for only a few minutes before the strain overwhelms him. During his years as governor, aides have read daily briefings, newspaper articles and personal correspondence into a special voice mail system for him to listen to.
Mr. Paterson, who is proud of the way his parents raised him, said in an interview that his life would be no less difficult had he learned Braille because Braille has its limitations, too.
“I don’t think things would have been easier for me if I had learned Braille because there’s a point that you get to in Braille where they can’t Braille everything for you,” he said. “You can’t Braille the daily newspaper.”
While parents want their children to live without the stigma that special education classes carry, some experts say that this often plays down the child’s limitations.
“Parents see Braille as saying their kid is really blind,” said Diana Brent, who is blind and has studied the developmental differences between blind children who read Braille and those who do not.
“I’ve often thought that partially sighted people might have a harder go of it because they’re trying to live in two worlds,” Ms. Brent said. “I live in a sighted world, but I function as a blind person. I’m not trying to function as if I can see because I never have.”
The governor said he was much better at recognizing his limitations now than when he was younger. “What you learn as you get a little older,” Mr. Paterson said, “is you really aren’t exactly like anyone else.”
Mr. Paterson was just 3 months old when he lost most of his vision, as a result of an infection. He can see nothing out of his left eye and just shapes, shadows and colors out of his right.
The governor’s mother — despite her insistence that he be treated as a regular boy — also helped him recognize that he needed a balance between striving for independence and asking for help when he needed it.
In the book “Sacred Bonds: Black Men and Their Mothers” by Keith Michael Brown, Mr. Paterson tells a story about a conversation he had with his mother after he had broken his wrist jumping out of his brother’s bedroom window to win a $5 bet.
His mother cautioned him that he could not take risks like other boys, but she also urged him to keep going to mobility classes to learn how to get around more safely.
He recalled her saying to him: “You felt you had to pretend to your friends that you don’t have a sight problem. I thought that going to this course would be a message to your friends that you need a little help every once and a while.”
Sunday, December 26, 2010
The NY Times:
Posted by BA Haller at 9:51 PM