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Breaking through barriers

Even though she is unable to walk or speak, Ana Amália Barbosa earned her PhD and launched a book on her experience with children with cerebral palsy, and now she is doing postdoctoral work

Ana Amália: communication through a special software and a card with lines, letters and numbers

LÉO RAMOSAna Amália: communication through a special software and a card with lines, letters and numbersLÉO RAMOS

A blink of an eye, a slight movement of the chin and a computer program are the tools that Ana Amália Tavares Bastos Barbosa, 49, an artist and art educator, uses to communicate. Since she suffered a stroke in 2002, she has been practically unable to move her body and she cannot speak. However, her memory and awareness are still intact. She feels she needs to express her feelings and thoughts, as evidenced in her blog posts, updated weekly, her paintings on paper and ink done using a plastic holder, and the classes she teaches students with cerebral palsy at the Our Dream Association in the Perdizes district of the city of São Paulo. That is also where she lives, with her mother, Ana Mae Barbosa, a retired professor from the USP School of Communications and Arts (ECA-USP), and her daughter Ana Lia, 15, in an apartment brimming with books and paintings from before and after the stroke.

Barbosa graduated with a degree in fine arts from the Armando Álvares Penteado Foundation (Faap) in 1991 and took courses abroad, such as studying engraving and design at Columbia University in New York and Japanese art at the University of Texas. She taught visual arts at São Judas Tadeu University and English at the Centro Britânico, a language school.

The meeting point of these two themes—teaching art and English—was the subject of her master’s dissertation, defended at the ECA. On the day she was scheduled to present the study, she had the stroke that left her hospitalized for four months.

To resume her career as artist and educator, she had to learn how to communicate all over again. The first instrument she used, after some adjustments, was a card with lines, letters and numbers, that a companion read with a raised voice so that she could express her wishes and carry on conversations by blinking her eyes. Next came a computer program that the Sarah Kubitschek Hospital in Brasília developed specially for her. The program has a virtual keyboard with a scanner that moves using a sensor located just below her chin. She used this instrument to answer the questions from the jury that evaluated her PhD thesis at the University of São Paulo’s Museum of Contemporary Art (MAC) in May 2012.

Despite all the problems she has faced, Barbosa says that she has never given up on her projects because she made a promise to her father, João Alexandre Costa Barbosa, a writer and professor of literature at USP, before he died in 2006. “I promised my father that I would never stop studying,” she says with rapid blinks of the eye. In her PhD research at the ECA, she analyzed the work of visual artists from 2008 to 2010 who taught children with cerebral palsy at the Our Dream Association. During her studies she worked on the relationship of the body in space and the development of senses of perception, such as vision, hearing, skin sensitivity, smell and taste. “Before that, the children would not allow anyone to touch them, whereas now they are in control of their bodies,” Barbosa writes with her chin on the sensor. Visits to cultural venues, such as the Tomie Ohtake Institute and other exhibits are part of her cultural inclusion project for these children.

The research for her PhD dissertation is told in the book entitled Além do corpo, uma experiência em Arte/Educação (Above and Beyond the Body, an Experience in Art/Education (Cortez Editora), released June 9, 2015. Now, in her postdoctorate studies at São Paulo State University (Unesp), Barbosa is studying the creation of an interface for quadriplegics to make sculptures using computers and 3D printers.