Too often, people with disabilities are relegated to being passive when it comes to the arts.
When a person is looking for a way to communicate in alternative ways, they need to find something that really works for them. They need to try to find a voice that sounds natural. They want to try to find a way to be efficient. They want to be able to communicate as normally as possible, even though they're not using their biological voice.
We got the diagnosis of Cerebral Palsy when Lelia was 18 months. I was really happy, as we didn’t know what was wrong with her before then. She had low tone. She couldn’t roll over. She couldn’t sit up. Of course she didn’t walk. The diagnosis gave it a name, something I could work with, and I became a kind of vigilante mother, determined to get the best care for my daughter.
I spent many years and many hours learning how to make the body work better, how to bring it out of pain. But that's not the human being alone.
Let me tell you about multimodal communication. We, as typical communicators, all use many different strategies. We use speech, gestures, facial expressions, technology, and no-tech solutions. As communicators, we all size up the situation based upon our communication partners, the context, the environment and then we choose to use the most effective communication strategy.
"Cerebral palsy is primarily a motor impairment so it's really important to look at what the child’s motor function is. Are they developing on the trajectory of a child who has cerebral palsy or are they developing as we would expect a baby to develop? "