The City of Syracuse joined more than 60 countries today in recognizing World Cerebral Palsy Day during a ceremony on the steps of city hall. CP advocate Cora True-Frost’s eight year-old son is one of the 17-million people worldwide living with the condition that affects body movement, muscle coordination, and communication. True-Frost says World Cerebral Palsy Day gives people with CP the opportunity to be seen and heard.
“Even though cerebral palsy is the single most prevalent disability in childhood, the public just doesn't hear enough about it. Even now in 2017, people living with CP are among the least understood and most stigmatized communities in the world.”
True-Frost says that she hopes World CP Day will spark curiosity and create a connection between those with and without disabilities. Long-time CP advocate and author Kathy O’Connell explains the difficulties of living with Cerebral Palsy in a world designed for people without disabilities.
“We may walks slower, or we may wheel to our destinations. We may speak with what appears to be a struggle. Or we may speak through assistive devices.”
True-Frost’s son Leo uses a computer-based assistive device to speak. She gets a little choked up when she talks about the communication challenges he faces.
“The hardest thing about not being able to use his voice is talking with people who don't have a communication disability and who don't know how to give him enough time to answer. World CP Day allows us to listen. We can remember that not being able to speak doesn't mean you don't have something to say.”
True-Frost and her family have been participating in World Cerebral Palsy Day since it started in 2012. She says while the day is mainly about inclusion, it’s also about understanding and embracing the independence and joy of people living with CP.