A voice all their own
Congenital diseases silence millions, but revolutionary technology lets the world know they have something to say
By KRISTIN HARTY, The News Journal Posted Sunday, February 24, 2008<!--

Brian Fleischut endures another spasm, frightening in its intensity. His legs jerk, his face contorts.

From his wheelchair, he reaches to press a lettered key on his communication device, using the only finger he can -- the middle one on his right hand.

"G ..." says a mechanical voice.

Born with cerebral palsy, Fleischut is trying to answer a simple question to help a stranger get to know him: What's your favorite color?

"... r ..." the machine says in monotone.

Fleischut grunts and twists, waiting for a spasm to pass. His left hand clenched in an awkward fist, he grimaces, then grins -- exaggerated expressions the disease forces his face to form.

It's uncomfortable to watch him. So most people don't.

Fleischut can't talk, so most people don't talk to him.

"We feel embarrassed, we feel awkward," said Katya Hill, director of the Alternative and Augmented Communication (AAC) Institute in Pittsburgh, which helps people who can't speak find other ways to communicate.

"Many times, when we look at someone in a wheelchair who can't talk, we're prejudiced to thinking they have a cognitive disability, too. That's not always true."

Sophisticated communication devices are making it easier for people with speech disabilities to interact with the world, with products rapidly evolving as technology advances. The newest devices are loaded with high-tech bells and whistles -- mp3 players, digital video feeds, telephones and e-mail.

For the estimated 2 million Americans who have severe speech disabilities, the developments are revolutionary. The technology -- once learned -- makes it possible to converse, potentially, with anyone.

The trick is teaching able-bodied adults to listen.

"With inclusion schooling, young people are getting used to seeing kids in wheelchairs and using communication devices," said Robin Hurd, whose 10-year-old twin boys are well-accepted by their peers at an inclusive public school in Pittsburgh. Both use wheelchairs and communication devices.

"Most of the adults running around out there don't have the benefit of that exposure," said Hurd, parent liaison for the AAC Institute. "The assumption is that these folks aren't too smart because their bodies don't work too well."

Cerebral palsy and other congenital diseases are among the most common causes of severe speech disabilities. Acquired disabilities such as Lou Gehrig's disease, or ALS, also cause language impairment, and more and more people are surviving traumatic brain injury, including veterans of wars in Iraq and Afghanistan who have been hurt in explosions.

Though funding is often an obstacle -- the average machine costs several thousand dollars -- communication devices are more accessible than ever. More than 100 models are on the market today, Hill said.

At Wilmington's Mary Campbell Center, where Fleischut lives, about half of the 65 residents use some sort of computerized communication device.

Carla Talarek is the only one with the most up-to-date model. She uses her head to press a button to navigate hundreds of screens on her Eco 14, customized for her with a pink frame.

With 136 keys, it categorizes word groups and grammatical markers under icons. An apple, for example, represents food and opens up screens listing a variety of things to eat.

If Talarek wants to say, "I ate breakfast," she selects "apple," plus the grammatical marker for a past-tense verb to form "ate," then "apple" again and the grammatical marker for noun to get to a screen that lists "breakfast."

It's quite complex.

"You have to be very bright to learn it," said Janice Timlin, a speech therapist at the Mary Campbell Center. "Carla is the star of that machine. She's learned thousands of those combinations."

Still, the process is slow. Having a conversation with Talarek or Fleischut is initially awkward. Silences linger beyond awkward. It's hard to know what to do.

Should you look at them while they're struggling against their bodies to convert thought to speech? Or look away? Is it OK to stand behind and watch the screen? Should you try to help by filling in the blanks?

It took Meredith Rosenthal, communications director at Mary Campbell, several months to feel competent conversing with residents who use communication devices. She worked in the fast-paced world of politics before joining the center's staff 2 1/2 years ago.

"You know how sometimes people get uncomfortable with silence?" said Rosenthal, who was Sen. Tom Carper's press secretary. "I'm one of those people. I just keep talking through the silence."

It takes about 2 minutes for Fleischut, 41, to announce his favorite color.

"e ..." the machine says as Fleischut works. He rarely looks at the keyboard because he can't hold his head still for long. His fingers, well-trained after 20 years of practice, know where to go.

"The key is to be willing to be uncomfortable for a little bit," the ACC's Hurd said. "The key is knowing that person has something to say."

"... e ..." the machine says.

In Fleischut's room, books line two shelves above the desk: A Waylon Jennings autobiography, a Bible, a Harry Potter book. Nearby sits a copy of the movie, "I Walk the Line," and a Johnny Cash mug.

Playing on the stereo: Cash's "Folsom Prison Blues," the volume turned low.

Well if they'd free me from this prison,

If that railroad train was mine,

I bet I'd move just a little further down the line.

"... n ...

"Green," the machine says, relinquishing the word at last.

Fleischut's favorite color is green.

Growing up silent

When he was born in 1967, Fleischut's parents were told their son would be a vegetable. Doctors recommended an institution. Fleischut's parents refused, taking him home instead to raise him as a normal child.

Though he couldn't talk, Fleischut responded to hand signals, and before long, was making them himself. The family created their own signals to communicate -- about 75 altogether.

Thumbs up meant "everything's good," for example. A hand across the brow: "Forget it." A closed hand rubbing the cheek was "mother." "Father" was a motion like tipping a hat.

When Fleischut was about 9 years old, his dad bought him a Speak and Spell, a learning toy for children that had eight letters.

"Can you imagine having the conversation we're having right now using only eight characters?" said Brian's father, Albert Fleischut, of Wilmington.

"That was so frustrating for him, trying to communicate, get his thoughts out. Even now, he'll break out in a sweat when he's got something he really wants to say."

Once, when Fleischut was a teenager, he went out to eat with his parents. After the waiter handed menus to his mom and dad, he started knocking on the table.

"The waiter said, 'What's wrong with him?' " Albert Fleischut remembered. "I said, 'He wants a menu.' "

Fleischut was a young adult before he got his first talking communication device.

Judy Jones was 43. When she was a girl in the 1950s, she was sent to a school for the disabled. No one ever tried to communicate with her there. That wasn't uncommon for Jones' generation.

"Teachers and therapists didn't know what to do with them," said Timlin, the speech therapist at Mary Campbell, where Jones, now almost 60, lives.

Before technology made computerized voicing possible, therapists used "communication boards" to interact with the speech disabled -- with pictures and symbols cut out of books.

When Jones was 16, her father gave her a 1-foot-square piece of white cloth with the alphabet written on it. For the next 20 years, Jones, who has cerebral palsy, communicated by pointing to letters and spelling out words.

She still carries the cloth, though she's learned to use three different communication devices and writes letters and e-mails daily to family and friends.

"As a therapist, we have to figure out what their cognitive ability is," Timlin said. "How many keys can they handle? What can they remember? What can they learn? What, physically, can they access? Can they use their hands?"

Helping others understand

Talarek has never been able to use her hands. She was born with cerebral palsy, but her mother knew from the time her daughter was a toddler that she was capable of complex thought.

"She always sort of had a sparkle in her eye," said Diane Talarek, of Wilmington. "I thought she had something going on upstairs. Everybody else was saying she really didn't."

Now 28, Talarek regularly visits schools, sharing preprogrammed speeches she's composed on her communication device.

"Having a disability is a beautiful thing because I understand life better," says her machine's female voice -- human-sounding, but sing-songy, with unnatural inflection.

"I can help people with their problems by my challenges with my life."

In her room at Mary Campbell, Talarek shows how she can play music on her device -- "Summertime" from "High School Musical 2" is her first choice. Her room is filled with stuffed animals, mostly monkeys. Attached to the back of her wheelchair is a colorful cloth butterfly.

"I have powerful faith," Talarek says, responding to a question about why it's there.

"In angels?" asked Rosenthal, trying to read her expression. "In what, Carla? Yes? And that's why you wear your butterfly wings?"

Talarek takes a few moments to compose another thought she wants to share. Ninety-nine percent of the time, her mother said, she knows what her daughter is going to say. But "there's been times she's surprised all of us," Diane Talarek said.

Talarek's communication device beeps as she navigates screens to select the words she wants to share, finally stunning her audience with a simple sentence.

"I love rainbows because it is God's smile," the mechanical voice says.

Fleischut's father feels the same kind of closeness with his son. Fleischut uses his communication device to call his father at least once a week. Calls rarely last less than an hour, even if Fleischut doesn't have much to say.

"We don't even have to talk," said Albert Fleischut, who still uses some of their old hand signs when he talks to his son in person. "A lot of times, we can almost finish each other's sentences. I had him 24-7 until he was 27 years old."

Even on a first introduction, it doesn't take long for Fleischut's personality to shine.

He likes to tease staff and friends at Mary Campbell, where everyone is familiar with his trademark "thumbs up" sign. He flashed it one day recently while demonstrating some of the frequently used phrases programmed in his device. "What's up?" for example, and "It's nice to meet you."

"How about, 'Rosa's the best case manager,' " Rosenthal said.

"Do you have that preset in there?" asked Rosa Guertin, Fleischut's case manager for the past two years. She has a bachelor's degree in psychology.

Fleischut roars, twisting in his chair and grinning, then making the universal "crazy" sign with his right hand.

He likes to go to the mall and the movies. Every day for six years, he has delivered the mail to fellow residents.

He's a little bit of a flirt, with visits from University of Delaware coeds among his favorite activities. Volunteer students often read to residents at the Mary Campbell Center.

"I like to read, but I need help," Fleischut said, playing a preprogrammed response to a question sent via e-mail several days before.

"The Johnny Cash autobiography is my favorite book. I would prefer if it was available on CD. It is easier for me to listen than read."

His favorite food: a meatball sub from Pat's Pizza.

Favorite movie: "Fiddler on the Roof."

Favorite subject at school: spelling, of course.

Favorite Johnny Cash song: "Ring of Fire."

When he was 4, Cash's show came on the family's television.

"He raised halfway up to see what it was," his father said.

Since then, his fondness has bordered on fanaticism. He's been to Nashville to see Cash's home and to Valley Forge to see him in concert.

The reason he likes the Man in Black so much:

"H ... e ... he," Fleischut said. "S ... t ... o ... o ... d ... stood ... u ... p ... up ... f ... o ... r ... for ... p ... e ... o ... p ... l ... e.

"He stood up for people."

Contact Kristin Harty at 324-2792 or kharty@delawareonline.com.

http://www.delawareonline.com/apps/p...NEWS/802240320