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“Voicing” Her Struggles

Published: May 2, 2016

Andrea Caban, head of voice and speech in CSULB’s Department of Theatre Arts, melds science and art in her new one-woman show “The Voice Bank” that details her struggle to help a woman prolong her ability to speak despite a diagnosis of ALS. It’s commonly known as Lou Gehrig’s disease, a progressive neurodegenerative illness that causes muscle weakness, paralysis and respiratory failure.

“This is groundbreaking,” said Caban, a member of the university since 2013. “It is a creative partnership my client and I have entered into. This is different from the standard relationship of a patient to a medical provider. Never in a million years did I think that, as a voice teacher, I would work with someone facing the fate of losing their voice. I was so sad and I was afraid I was going to lose her.”

The experience “The Voice Bank” is based on began in Caban’s private practice when she was approached by a retired lawyer who experienced trouble with her speech.

“I began to teach this woman what I teach CSULB students every day, about proper breath support and how to explore the intricacies of articulation,” she said. After several months of work, her client began to show improvement. “She was able to conduct meetings again without feeling as if she were choking on her tongue,” Caban recalled.

But when Caban returned to her practice after a summer of research, she discovered her client had been diagnosed with ALS.

“At the time, I had no idea what the disease was so I went into a furious research mode trying to see if what I was doing was helping or hurting my client,” she recalled. “When I looked at the standard speech and language pathology practices for the ALS population, the advice I found was `don’t do much. The motor neurons will eventually die and you don’t want to exhaust those motor neurons.’ So I told my client I didn’t know if we ought to continue. She replied that she had two options: to go home and wait until she couldn’t speak anymore or try something. What we did was to create an accent.”

Caban and her client worked around the weakened muscles of her client’s vocal tract.

“Her soft palate, (her velum) was weakening as well as the root of her tongue, so we made adjustments to the areas where she was making sounds to work around those weakened areas,” Caban explained. “We created a fictitious accent that sounds a little bit like a mix of Chicago and California. It is very bright and high-pitched which is very different from what I call her Voice One. She can still speak in Voice One for a couple of words but then that voice is over. Voice Two enables her to continue to speak without any assistive technology at all.”

It was at her husband’s suggestion Caban decided to write “The Voice Bank.” Once her client had given her permission, Caban began to collect interview material for the play. Once formed, she performed the piece for a series of readings and workshops including one for CSULB’s Carpenter Performing Arts Center in May 2015 and CSULB Theatre Arts’ Affinity Series in last October. She was invited later to take the performance to the Penn State Art and Design Research Incubator in November. She is now working with clinical partners in the medical community to develop the clinical research possibilities of the work. Then, on top of that, she just submitted a proposal to perform the show at the UC Irvine Medical Humanities Initiative.

Andrea Caban on stage during a performance of "The Voice Bank".
Andrea Caban on stage during a performance of "The Voice Bank".

“It’s not just a play anymore,” she said. “It has become public scholarship; a calling card for the innovation we developed. It helps me gain interest from clinical partners.”

Her tours include a community-engagement component covering everything from developing a documentary theatre piece with Long Beach high school students to creating a clown show with sex-workers in Cape Town. “I’m a community engagement theater maker,” she said. “I always feel I need community engagement to go hand in hand with my auto-ethnographies.”

Caban points to a just-out research study from the Hershey Medical Center that argues vocal communication was the top quality of life issue for ALS patients. “I see the fact that this study just came out after I shared my work with the ALS team there as an affirmation. It taught me to trust my own expertise, even though I’m in new territory,” she said.

Caban feels there is a special challenge to portraying clinical issues before clinicians.

“It’s really scary,” she said. “It can be very affirming when I perform for those who live with ALS because they say ‘yes, yes, yes, that was my experience!’ For clinicians and medical practitioners, I have gotten twin responses. The first is ‘you’re crossing the line’ and the second is ‘this is ground-breaking work.’ What they meant by ‘crossing the line’ was that I am an arts-based researcher, not a clinician. When I enter that arena, people are surprised by how scientifically based the work is.”