Finding a Voice
Diane Sineath with the headmouse "dot" on her nose
Finding a Voice
by Claudia Sineath
My daughter’s autobiography naturally begins with the details of her birth: when and where she was born, the labor and that awful period after delivery when she could not breathe. About it she writes: “I did not die. Thank you, God. That is how I got be CP [cerebral palsy], but I am not MR [mentally retarded].” Such words are a miracle to me. Not because she can write them, but because my daughter can finally say them aloud.
Diane is an intelligent, healthy 49-year old woman who loves conversation. Diane uses several kinds of assistive technology, including a wheelchair, but this article is about Diane’s experience with augmentative communication. Her mind is like a sponge and she has always wanted to talk with people. She has opinions to be shared in every discussion and wonderful stories to tell. While our family can understand her speech about 99% of the time, that doesn’t mean everyone else can. Diane has cerebral palsy accompanied by oral-motor difficulties so she cannot speak in “whole words.” A keen listener can figure out what she is saying through facial expressions and oral postures. For words that are more difficult to articulate, Diane will spell them out, but she first blinks to let the listener know that she has begun to say letters rather than words. Before we acquired a communication device, the easiest way to talk to her was by asking yes/no questions. However, this prevented her from initiating topics for conversation or expressing her own thoughts and opinions. Because Diane has so much to say, she has never stopped looking for new ways to communicate.
At 5½ years, Diane learned to type on an IBM electric typewriter using a stick attached to a hockey helmet. While this served a purpose, this makeshift piece of equipment could not be lugged around on a wheelchair. As modern technology developed, our family saw some amazing tools being used by people with disabilities. Unfortunately, Diane could not easily use the new gadgets since they usually required hands or voice to activate them.
We didn’t know where to turn for help because, sadly, Diane was usually lumped in with services for the mentally retarded. A friend at a state agency concerned with severe disabilities urged me to apply for services, telling me “Things are different now.” And he was so right. Diane’s life began to change when a group of people from different agencies started to work together on her communication issues. People from the Department of Disabilities and Special Needs, Midlands Regional office, Disabilities and Special Needs Board of Richland/Lexington, the SC Assistive Technology Program, the Head and Spinal Cord Injury Division (HASCI) of the Department of Disabilities and Special Needs, and a contracted speech therapist all realized that most important thing they could do for Diane would be to help find a speech tool for her. They looked at Diane’s capabilities, tried different things and came up with an effective solution.
Diane got a demonstration and loan of a communication device, the DynaVox 3100. The gentleman who delivered the last component hadn’t even gotten to his car when we heard a computer voice saying say “My Life Story, by Diane Sineath.” Diane was off and running, and hasn’t stopped since.
This augmentative communication device has a 12” screen with a picture of a keyboard on it. Unlike traditional keyboards, the on-screen keyboard includes word prediction and lots of icons representing whole phrases, which helps speed up “typing.” The screen is accessed by an infrared attachment. There are many different ways to activate the screen, but Diane does it using a little dot of sensitive material stuck on the end of her nose, referred to as a “head mouse.” In essence, she becomes a human remote control! When Diane moves her head, the computer mouse arrow moves about on the screen. A letter or phrase is “pressed” by pausing on it for about 1-1 ½ seconds, her “dwell time.” Then the letter or phrase appears in a message space. After Diane is finished composing her message, she pauses on the message space to activate a synthesized voice (nicknamed “Ursula”) that says aloud exactly what she typed. The first thing Diane wrote was about her speech pathologist, “I love Debbie.” When she saw this, Debbie said, “My long years of training and experience were worth that single moment of human emotion.”
When the two-week trial period ended, Debbie wrote a report recommending this device as something Diane needed to expand her communication abilities. Next, Debbie filled out the paperwork required to get the device ordered. This was a time-consuming task, one that the DSN County Board contracted Debbie to do for us. We also purchased a wheelchair mount so that Diane can take it with her wherever she goes. DynaVox can also be plugged into our computer so that she can surf the Internet, send e-mail, print, and more! This new technology allows Diane to easily participate in discussions with her peers. No longer will she be forced to endure people talking to her, because now they can talk with her. The professionals who work with her are now asking her for her opinions on whatever is discussed and recommended. She is their peer and loves being treated as one. And the joy in hearing her chat with her longtime friends is indescribable.
Diane can finally set free all the words she has held inside for so many long years. We continue to be thankful for all of the people from different communities and agencies who have worked together to make a tremendous difference in Diane’s life. But most of all I am thankful for the example Diane gives everyone around her. Her intelligence, her motivation, her persistence and her enthusiasm are contagious, and she finally has a voice to express all of her wonderful qualities.
Reprinted from the South Carolina Assistive Technology Program’s Assistive Technology News, February 2003