In an age when Siri talks to us on our iPhones and artificial voices provide us with telephone numbers from directory assistance, upcoming turns from GPS units mounted on our dashboards and arrivals and departures in airports, perhaps hearing them speak from an IPFW stage shouldn’t seem too surprising.
But the voices performing last month in Watch Your Tongue, Cecily Beasley, a theatrical adaptation of a children’s book, were extraordinary – because they came from children and young adults who would not be able to speak at all were it not for augmentative/alternative communication devices that give them a voice.
The devices are similar to those that came to widespread public attention when famous physicist Stephen Hawking, suffering from progressively paralyzing ALS, also known as Lou Gehrig’s disease, began using one from his wheelchair, says Sharon Egly, director of IPFW’s Communications Sciences and Disorders Clinic.
The clinic produced the play and sponsored an accompanying weekend camp in October.
But now the devices have reached area children as young as 6, Egly says. That’s how old Bryanna Sikora of South Bend was when she got her device. She played the lead role of Cecily, a little girl with the impolite habit of sticking her tongue out at others until it gets stuck that way.
Research shows that kids as young as 18 months can use a device and learn it faster than kids 2 years old, Egly says. That’s why it’s important to get to kids early.
But since speech devices similar to the ones used now have been available for only about 20 years, the nine young people who starred in the IPFW play represent the first generation of people to grow up with access, Egly says.
And that, she adds, has the potential to dramatically change their lives.
People who use communication devices have conditions such as cerebral palsy, stroke, spinal-cord injury, cancer of the voice box or throat, and muscle disorders such as muscular dystrophy and myasthenia gravis, Egly says. The devices also can be used by the deaf.
An estimated 4 million people of all ages in the United States can’t rely on speech to meet their communication needs, including an estimated 2,000 in Allen County, she says.
Most still don’t have devices, she adds. The devices, costing between $5,000 and $20,000, remain expensive for most families, although insurance may cover some costs.
Devices are not a one-size-fits-all solution, she says. Many for whom they’re appropriate have physical or intellectual limitations that require customized fitting.
Particularly prevalent are issues with muscle weakness or coordination that limit the ability to use a traditional keyboard, Egly says. And, although the devices can be programmed, they still tend to be inefficient at communicating, she says.
We speak 150 to 200 words per minute. When you are communicating with someone with a device, their rate of speech may be four to 10 words a minute, Egly says.
We, as a society, don’t want to slow down and wait for those messages. Even within a family, they’ll tend to speak for the person with the device instead of letting that person speak for themselves.
Still, the devices have come a long way from earlier computerized models. Many have touch screens and preprogrammed keys that enable a user to say frequently used words, phrases or sentences. And input has been improved with various kinds of switches.
We use whatever part of their body they can use (to activate the device), Egly says. One play participant activated his unit with his toe, the only part of his body he can move, she says, adding that eye-gaze technology is now being pioneered.
Rachel Holsinger, 10, of Waterloo has had a device since she was in kindergarten, says her mother, Mimi Holsinger, 47, a special education teacher in the Northeast Indiana Special Education Cooperative. The girl now uses a DynaVox VMax, which consists of a touch screen about the size of an iPad and switches that she controls by moving her head and her right wrist. She doesn’t have finger control.
The device has pictures in categories such as My School, Me and My Needs, Mom’s House, My Words and Games that pull up other images or lists or a keyboard. Rachel typically selects the category with her hand and uses her head to make her voice.
For the play, which had costumes and make-up, Rachel and other actors were allowed to have their devices preprogrammed with their lines, which were also displayed on a big screen.
Performers also had onstage assistance from human aides, undergraduate students studying to become speech therapists at IPFW.
Rachel’s aide kept track of when it was her turn to speak, and all Rachel needed to do was move her hand to say her line.
Happy to demonstrate her device for a visitor, Rachel used it to show pictures of – and say the names of – some of her middle-school friends. Then she had the device say the first line of her character in the play, a prim-and-proper gray-haired, pearl-wearing grandmother who disapproves of Cecily’s rudeness.
What’s going on here? I’m hearing a lot of loud talking! says a female voice while Rachel breaks into a grin and starts laughing at her favorite line.
That’s how you can tell she’s pretty pleased with herself, her mother says. Yes’ for Rachel is a smile.
Holsinger says her daughter took to the device really quickly, but there have been difficulties with positioning and switches, as well as fluency.
My ultimate goal is for her to be able to tell me where it hurts, Holsinger says, adding that her daughter had a series of seizures that turned out to be strokes when she was just a few days old.
She can say a few words but basically is nonverbal.
Teaching a child how to use a device is a lot of work, Holsinger says. That’s why the camp is so important. So many students graduate without having any experience with these things (devices) and with really involved kids.
As well, Holsinger says, being in the play gives Rachel a chance to see the reactions of other people to her device-generated speech – many of her lines brought giggles from the audience.
The joy is also in seeing her interact with others who communicate this way, Holsinger adds. This is our fourth year, and I was amazed. She had a lot of lines, and she did very well.
Egly, who says play participants came from Ohio, Michigan, Illinois and throughout Indiana, agrees that having device users meet other users is beneficial. Many, she says, had never seen anyone else with a device before.
She adds that the devices are not for every voice-impaired person – success depends a lot on an individual’s personality and motivation, she says.
But for many, devices can unlock whole new worlds.
For some, they provide an ability to read a story out loud, present a book report or give a speech, Egly says. For others, the devices mean easier interactions with kids their age.
For still others, they free intellectual abilities.
One of the problems dealing with someone with a physical disability is that a lot of testing depends on being verbal and communicative, Egly says.
When someone is physically impaired, when they can’t communicate, they’re judged on their physical disability and not on their cognitive ability, which may be very good.
But with the growing acceptance in society of laptop computers and artificial voices in everyday life, Egly says, the future looks much better for device users.
They learn quickly that the ability to communicate is a very strong thing, she says. Communication is very powerful.