What is the UPBC?

The purpose of the organization is to create a climate of opportunity for blind children in home, school and society; to provide information and support to parents of blind children; to facilitate the sharing of experiences and concerns among parents of blind children; to develop and expand resources available to parents and their blind children; to help parents of blind children gain understanding and perspective through partnership and contact with blind adults; and to function as an integral part of the National Federation of the Blind and the National Organization of Parents of Blind Children in their ongoing efforts to eliminate discrimination and prejudice against the blind and to achieve for the blind security, equality and opportunity.

The membership is open to parents of blind children, educators of blind children and others interested in promoting the purposes of this organization.

We are a division of the National Federation of the Blind which is the largest organization of the blind in the country. Refer to: http://www.nfb.org/

Utah Parents of Blind Children is a 501(c)(3) Non-Profit Organization

Thursday, September 24, 2009

Seeing Burgon: Blind, deaf teen lives her life to the fullest

Deseret News

Published: Sunday, Sept. 20, 2009 8:23 p.m. MDT

Where do we begin a story about Burgon Jensen?
We could start with a cursory introduction: She's an 18-year-old honors student at Hillcrest High School.
We could describe some of her activities — she rides horses, skis, rock climbs, shops, hikes, and reads and writes prolifically, among other things. If you really want to know who she is, read her poetry. (You will if you read on.) She also sang and danced in a school play and was voted to the school's Peer Leadership Team by her peers.
We could continue the introduction with a description — she is slender, with long, silky hair the color of honey and vivid blue eyes that tremble but do not see.
Oh, and we could also mention that Burgon Jensen is blind and deaf. (Now go back and reread the previous paragraphs.)
Burgon is as pleasant as a Sunday morning — serene, guileless, humorous and perceptive — and everyone who interacts with her tends to gush like this:
"She's one of the most inspirational students I've ever worked with," says Karen Brown, a teacher and counselor for 28 years who works at Hillcrest High. "It's not because she's blind and I feel sorry for her. There's something about her. Everyone sees this specialness in her."
"People are so drawn to her," says Burgon's mother Katie. "Adults, more so. So many people have commented on her charisma or aura."
Let's take care of some business before we proceed. Burgon was born with retinitis pigmentosa, a progressive disorder that eventually leads to blindness and sometimes hearing loss, as well.
She was diagnosed as legally blind at 3 months, and doctors fitted her with tiny glasses. ("She looked like a Cabbage Patch baby," says her mother Katie.) She remembers colors now only as emotions. She lost all of her sight during her fourth and fifth years — about the same time she began to lose her hearing. Over time she needed increasingly stronger hearing aids, which provided limited sound — she could hear if someone talked closely and directly into her right ear and there was no other noise in the room. About 18 months ago, her hearing dropped dramatically to almost nothing.
She prepared for this life of silence and darkness. She began learning both types of Braille at 3 — Grade 1, in which each word is spelled out, and Grade 2, a form of shorthand. Two years ago she began to suspect that a complete hearing loss was inevitable, but decided not to tell her parents until months later. She insisted on studying sign language classes, even when her mother lobbied against it because it was such a difficult challenge. Burgon learned sign language so fast that her teacher told Katie it was too exhausting — he couldn't physically keep up with her and her insatiable appetite for more — so he cut back her class time.
"She was so sad (about losing her hearing)," says Katie. "It was like a death. I would ask her, 'Can you hear me?' and she would make excuses, blaming it on background noise or something like that. She admitted later that she knew it was going and that's why she had wanted to study sign language."
Wait a minute, you're wondering, how can a blind person interpret sign language? She cups her hand softly around the signer's hand as the latter signs, a la Helen Keller. It requires a deft touch, flowing with the movement of the signer's hands and fingers. This is how she "listens" to the sermons in her LDS ward.
"Mom said it would be hard and it was," says Burgon, "but I had a feeling I would need it."
When Burgon was a child, her mother insisted she learn to write, as well. She managed to learn the task before she lost her sight completely, aided by a large magnifying glass that beamed the image on a screen. "It's not pretty but she can do the job," says Katie.
This is a bright, motivated, fearless teen. She earns A's and B's in mainstream high school classes. She scored in the 95th percentile in geometry in a year-end statewide test, taking a Braille-like version of the test.
She runs, hikes, skis, skateboards, sculpts animals from clay, takes the family dog for walks, jumps on a trampoline, rides horses, cooks, helps her mom clean up, even assembles 100-piece puzzles. She tried yoga and judo for a while, once flipping her brother onto his back during a playful moment at home.
"I like the fact that I can do what anyone else can do," she says. "It's a thrill. You have to trust your hands and feet."
One day last year she announced to her mother that auditions for the school play were being held — that day. Kids had been preparing for weeks to sing a solo for the audition. Katie and Burgon showed up just to watch. After the last of the scheduled tryouts was completed, the adviser asked if anyone else wanted to perform. Burgon stood up and made her way down the aisle, with her shocked mother at her side. The only sound in the auditorium, which was filled with about 100 kids, was the tapping of Burgon's cane on the floor.
"What are you doing?" Katie asked her daughter.
"No regrets," said Burgon, who hadn't lost her hearing completely at the time. "Just get me out of here as soon as I'm done."
"What are you going to sing?"
"I'll surprise you."
One of the strict rules of the audition is that clapping is forbidden. When Burgon was finished singing "Anything for You" from "Oliver," she received a standing ovation from parents and peers, many with tears in their eyes.
"Normally, she's off-key, but this time she was on," says Katie. "She sang like an angel. If we had a 10th of her courage … ."
She passed the audition and performed in the play. Classmates led her on and off stage and cued her at the onset of a dance or a song by squeezing her arm or tapping her shoulder. She danced in four dances and never missed a step.
"From the beginning, we thought we were going to be the teacher, but we are the students," says Burgon's father, Bruce. "We're learning from her all the time."
How could a man not be changed for the better who has gently applied mascara to his daughter's unseeing eyes on mornings when his wife must leave early for work?
As fate would have it, Burgon has been gifted with a patient, nurturing family — Bruce, a graphic designer, Katie, a school librarian, and a 21-year-old brother, Garrett, whom Katie calls "the best brother ever."
Some teenage boys might have balked at holding their little sister's hand as they walked with their friends to the bus stop each morning, but not Garrett. His friends drew her into their group and she became everyone's little sister. She was included in so many Boy Scout meetings that she eventually was given her own Scout shirt and Scout nickname (Little Fox).
"In her environment, she's as normal as can be," says Bruce. "She moves around very well, and she's very independent. She takes care of herself. She is fanatical about taking care of her hair, and she can do a lot of her makeup herself."
Burgon spends much of her time with her family. She and her mother like to go to the mall, where Katie scouts out clothes for Burgon, who then runs her deft hands over the clothing, feeling the texture and the style before passing judgment — "No, that's not me." "Those sleeves are weird." "There are too many buttons." "It's too ruffley."
One of Burgon's favorite activities is a simple trip to the grocery store with her father. He turns it into a game, picking food items and asking her to identify them based on smell, shape and texture. "Her sense of smell is off the charts," says Bruce.
During drives in the car, the family provides a narrative of what they are seeing, although, if it's familiar territory, Burgon usually knows where they are.
"Can you imagine how horrible it would be to sit in a car and see nothing?" asks Katie.
Burgon's hands are her eyes. During a recent visit to the LDS Church museum, she ran her hands and fingers over every inch of a large sculpture of a pioneer family pulling a handcart. During visits to a dinosaur museum and a high-end art exhibit, Burgon and Bruce were told to ignore the "Absolutely No Touching" signs — she could touch anything she wanted, which she was only too glad to do.
"That's how she sculpts," says Bruce. "She feels the dimensions and shapes, then it goes in the memory bank and she can reproduce it."
Among her many other interests, Burgon developed a deep love of books as a young child when her parents and maternal grandmother spent long hours reading to her. On a recent Monday, Katie brought home six Braille books from the library and by Thursday Burgon was finished with them.
All that childhood reading produced a side benefit: For lack of a better way to describe it, she doesn't talk like a typical deaf person. During those long reading sessions, she heard the words pronounced correctly over and over and was able to imitate them.
Now she reads with her fingers at about the same speed as most people do with their eyes — books, church magazines, Seventeen magazine. (She complains that the Braille version doesn't include coupons.) It's a remarkable thing to watch, as she runs her right index finger over the words, trailed by the left index finger as backup.
Burgon, who was named after her grandmother's maiden name, is hopeful that she will regain much of her hearing. In January, she underwent cochlear implant surgery in her left ear. Surgeons cut into the side of her head and implanted enough hardware to open a Radio Shack — a microphone, a speech processor, a transmitter and receiver, an electrode array and even a magnet. But it takes a year or more for the brain to remap and learn to interpret sounds. She is just starting to make sense of what she is hearing. The sound of her own flip-flops or birds in the yard have caused her to stop and ask her mom, "What was that?" Recently, she has been able to hear the songs of the Beatles, her favorite group.
Burgon utilizes other technology that enriches her life — a Braille typewriter; a PAC Mate, a small computer that, among other things, converts her Braille input into a readable format for her teachers; a special laptop that displays information from the Internet in Braille and provides oral directions and descriptions to help her navigate the Internet; a VictorStream, an iPod type device that allows her to download books. She also listens to movies specially made for the blind that describe what is happening on screen, in addition to the dialogue.
The machines are her connections to the outside world. Otherwise, she is isolated in many ways. She is popular enough that her peers voted her to the Peer Leadership Team, but she walks through the crowded hallways alone and does little socializing. Her closest friends are blind kids who attend other schools.
"The kids at school are nice," says Brown, "but she doesn't have a close friend. The other kids would say hello, but she can't hear them and so she doesn't say anything in return, so after a while the kids don't even try. … And she knows when she's a project. She just wants to be a regular kid."
Burgon has produced a notebook of her own poetry, which provides an intimate glimpse into her world, especially this one, "Most Painful of All."
Because you ignored me
You never tried to hit me
With the shame of sticks and stones
You never saw me bleeding
You never broke my bones
You never pushed or shoved me,
Or called me hurtful names.
You never saw the tears that fell,
You never saw the pain.
But now I hope you hear me,
For what I have to say,
You never did do any of these things,
But you did look the other way.
Don't look the other way.
"It's hard at school," Katie says. "It's awkward to meet new people. Kids are insecure, and if someone doesn't say hi back to them they take it as rejection, but Burgon doesn't hear them. It's scary for them to walk up to her. They're intimidated by her."
Burgon understands her peers' point of view. "Kids know they'll have to be patient with me, they'll have to commit themselves," she says. "If we hang out together, they know they're going to have to explain things and help me. I don't do things as fast as other kids. They're going to have to show me things by feel." Burgon continues, "One of the hard parts about being blind is that I'm awkward to approach. People don't know how to talk to me … or get my attention. And some kids talk to me like I'm 5."
She visits her school in the summer to practice finding her classrooms, but when school is in session there are inevitable hazards. She has been accidentally bumped, elbowed and hit in the face.
Burgon maintains a sense of humor about her life. She has a T-shirt that reads: "I never forget a face — but for you I'll make an exception." Once she caught her mother asking her where she had placed her keys: "The blind leading the blind," she pronounced. She likes to tell her family, "Beauty is in the mind of the beholder." Another T-shirt: "What you see is what you get."
She has even discovered certain advantages to blindness. Years ago her father caught her reading in the dark under her covers late one night, long after she was supposed to be asleep. Other girls have to stop reading when the lights are turned out, but not Burgon.
"I didn't know you were doing that," Bruce said.
"I've been doing it forever," she confessed.
Someday Burgon wants to be a psychologist for the deaf and blind to help them with their special challenges. She already has begun reaching out to others. She reads Braille for kids at libraries and schools and tutors a blind man with cerebral palsy in math. After some of her presentations to groups, she opens it up for questions about her challenges, but it is sometimes uncomfortable — for the audience.
"The parents are shooshing their kids not to ask questions, but she wants them to," says Katie.
When Katie asked Burgon what was the one thing she wanted communicated in this story, she didn't miss a beat. "The worst thing anyone could do is to pity me or feel sorry for me," she said. "There's nothing to feel sorry for. I'm this way for a reason."
Says Katie, "She never says why me. She knows why she is here."
"I'm used to it," says Burgon. "Some people, when they first go blind or deaf, they're really frustrated and think something's against them. But since I've had it all my life I'm used to it and I'm happy the way I am, and I'm prepared to live that way."
"Who Am I?"
I'm known by most as the "Blind Girl,"
By others "The girl that can't see."
When I walk, I walk with the aid of a cane,
But that's all people really know about me.
You may see me walking unnoticed somewhere
Or maybe just sitting alone
My courage is constantly tested,
And my flame of hope is frequently blown.
You may see me smiling at nothing,
And usually I don't say a word,
But please don't get the wrong impression,
Because this doesn't mean I'm unheard,
I'm willing to speak to those who listen,
I'm willing to listen to those who speak,
I want to help those who stand in the shadows,
I want to give hope to the weak
I was sent here with eyes that couldn't possibly judge
To teach people the meaning of the word sincere
Because in the end, what you see can often deceive you
And things aren't always what they appear,
So now you know my story,
Why I'm called "The Blind Girl."
By others "The girl that can't see"
When I walk, I walk with the aid of a cane
But now you know so much more about me.
— Burgon Jensen
e-mail: drob@desnews.com
© 2009 Deseret News Publishing Company | All rights reserved

1 comment:

Becky said...

Fabulous article about introducing many to Burgon and seeing her with so many wonderful talents, qualities, and attributes - one of which is blindness.