The room was filled with excitement and anticipation as CSU East Bay’s Aphasia Tones prepared for their concert. What made this different from most concerts was the audience was over 10,000 miles away.
Aphasia is a chronic condition that impairs an individual’s ability to talk, understand language, read and write. The communicative disorder can result from stroke, brain trauma, brain tumors, or degenerative diseases, according to CSUEB’s Department of Communicative Sciences and Disorders.
In a CSUEB classroom a camera sat in the front of the room while singers sat comfortably at their desks. It seems like just another day at school, yet, the Aphasia Tones are about to start their concert. Their audience is halfway around the world projected on a large fuzzy screen.
The Aphasia Tones collaborated with Siyathemba Singers, an aphasia choir from University of Pretoria in South Africa. The connection between the two groups started eight years ago when the founder of the Aphasia Treatment Program, Jan Avent connected at an aphasia conference in 2007 with Glenn Goldblum, founder of Conversation Groups at the University of Pretoria.
In 2009, Janet Patterson became the new program director and worked with Goldblum to start a Facebook page for the groups, in order for them to get to know each other.
This year, Goldblum worked with the current Director of CSUEB’s Aphasia Treatment Program Ellen Bernstein-Ellis, and connected to Siyathemba Singers’ music therapist, Tanya Brown to put the global choir into effect.
The University of Pretoria held their Annual Aphasia Awareness event where 200 group participants, community members and supporters attended the event and watched the Aphasia Tones perform via Skype.
Bernstein-Ellis developed the unique choir in 2009 and described aphasia almost like “identity theft.” She said this is because patients often feel like they cannot express who they are and what they are thinking as clearly as they want.
“I think it’s important for people to understand that people with aphasia are competent,” Bernstein-Ellis said about the disease. “It’s just that the aphasia can mask that competency making it difficult for the individual with aphasia to participate in life’s activities and conversations.”
In their first ever global concert via Skype, the 25 person choir started the unique concert by singing “It’s Me,” — a Michael Jackson parody of “Bad.”
“It takes time to get a message out,” sung the Aphasia Tones, changing the lyrics to “It’s Me”. “But it doesn’t change what I’m all about.”
The lyrics to the inspiring song were created by members of the choir and Karen Fremont, a CSUEB alumna who worked with ATP as a clinician.
“I’m so excited,” said Dorene Lopez, a member of Aphasia Tones. “I’m so happy we sang and got to sing together with them on Skype.”
Lopez said she had a brain aneurism over a decade ago which lead her to suffer from aphasia which can make it hard for her to communicate but being part of the choir as well as ATP has helped her a lot by improving her speech and writing.
“It helps us build confidence,”said Lopez I can sing with them and it really hits my heart. It hits my soul.”
After each choir performed their original song, the two groups did a joint choral performance of the classic song, “Lean on me”.
Graduate students, Julie Spicer and Gabrielle Angeles, volunteer their time to help Bernstein-Ellis this year in directing Aphasia Tones. To prepare for the concert, they did a series of body stretches and vocal warm ups. The choir was laughing and joking together, as they patiently waited for the Skype call.
Along with the directors, volunteers sat with some of the choir members to help guide them in reading their lyrics during practice and the concert.
“We like to help them do stretches so they can relax their body and just have fun,” said Angeles, who began working with people of aphasia early last year.
Both graduates said music is a great outlet in general and those with aphasia can use it to express themselves.
The Aphasia Tones will be performing at the CSUEB Disability Awareness event on Wednesday, October 30th at 11:30 a.m. before their panel on disability and sexuality.