In the Fall 2008 issue of The Expedition Journal, we referred to something called “AAC” a few times. Some may wonder exactly what we are talking about and how it fits with the mission and vision of Eleanore’s Project. The answer to that question begins with Eleanore’s life, which inspired our vision. Eleanore was profoundly deaf in addition to having been born with a significant motor impairment; moreover, her deafness was not diagnosed until she was nearly 5 years old.
We learned firsthand about the frustrations of living with a communication disability and experienced the joy of seeing our daughter’s life changed when she was given access to alternative and augmentative communication (AAC). During Eleanore’s life appropriate mobility equipment, American Sign Language and AAC transformed her world.
Augmentative and alternative communication (AAC) includes all forms of communication (other than oral speech) that is used to express thoughts, needs, wants, and ideas. We all use AAC when we make facial expressions or gestures, use symbols or pictures, or write. People with severe speech or language problems rely on AAC to supplement existing speech or replace speech that is not functional. Special augmentative aids, such as picture and symbol communication boards and electronic devices, are available to help people express themselves. A person who cannot speak still has plenty to say, and AAC allows these individuals to communicate more freely. Stephen Hawking is perhaps the most famous person who uses AAC today.
We have shared our family journey seeking a communication system for Eleanore at the International Alternative and Augmentative Communication Conference – Latin America in 2005 and 2007. In addition, Tamara was asked to present on the importance of seating and positioning as a foundation for communication. In August 2008 we gave similar presentations at the International Society for Alternative and Augmentative Communication Biennial Conference in Montreal. Later that month we began to flesh out our commitment to AAC by incorporating it into our wheelchair seating clinics in Jordan. When children were non-speaking we asked simple questions such as “How does your child communicate?”, “Who understands your child?”, and “How do you know what your child wants?” When families expressed real interest and investment in helping their child communicate more freely, we offered some very basic AAC strategies primarily based on yes/no questions. It was heartwarming to see the excitement of several children when they were given a new way to express themselves, not to mention the pride in their parents’ faces.
You see, helping a child sit up for the first time in a wheelchair is not the end of the story. It is only the beginning – the opening of a door. The goal of our wheelchair clinics is much more than putting kids into chairs that roll so that they can get from point A to point B. We aim to foster their growth and development as people and to change attitudes toward disabilities in their societies – and communication is a crucial part of the equation. That is what AAC has to do with wheelchairs!