A balloon popped. My sister and I clapped our hands over our ears. Our mother was angry at our antics. The loud noise might upset the baby, she said. But my one-year old cousin, Sangeeta, didn’t flinch. She never even turned toward us. That’s when we suspected that Sangeeta couldn’t hear. Trips to specialists confirmed that she was profoundly deaf.
Life began precariously for Sangeeta. Soon after she was conceived, her mother contracted German Measles (Rubella). The virus caused several problems. Sangeeta was a tiny baby who had to stay in an incubator for many months because she had trouble breathing on her own. She had a hole in her heart and a faulty valve that were surgically repaired. Her parents and doctors were so focused on these problems that her hearing loss (due to the Rubella) went undetected. In spite of these early difficulties, Sangeeta not only survived, but she thrived.
Sangeeta was a happy baby at home in India, gurgling, laughing, her eyes taking in everything. But her toddler years were difficult. She hadn’t acquired language to express her wants and frustrations. She could ask for things that she wanted by tugging at her mother’s sari and pointing. But she lacked the tools to process her thoughts and the tools to express them. She had frequent temper tantrums.
Sangeeta’s parents persevered. They enrolled her in a special school for the deaf. She slowly learned to recognize various sounds by placing her hands on the lips and throats of a speaker. Her first word, at the age of two years, was phool – the Hindi (her native language) word for flower. A favorite word was “Papa!” I remember the day she said, “fish.” Sangeeta was hungry and her father was frying a pomfret. She wanted that fish NOW! She mouthed the word fish. No response. Sangeeta got angry. That fish was still in the frying pan and not on her plate. She stamped her foot, took a huge breath and spat out the word, “FISH!” Immediately, she knew she had done something very different than just mouthing. We were all clapping in the kitchen. So by trial and error, Sangeeta learned to create sounds.
Sangeeta learned to understand language through Cued Speech. It’s a simple system of hand cues placed around the speaker’s mouth to aid lip reading. Spoken language becomes visually clear. Because it is phonetically based, it can be used in any language. Sangeeta became an excellent lip reader. “I compensate for not being able to hear with my ears,” she says. “Right from the beginning, I was trained to use my eyes. I am highly observant. I understand most body language.” Reading and writing followed naturally for Sangeeta. She is fluent in English and knows many words in Hindi and Marathi, both of which are spoken by the majority of people in Mumbai, India, where she currently lives. Sangeeta is also fluent in American Sign Language.
As a child, Sangeeta was often naughty and had to be scolded by her mother. If Sangeeta was not in the mood to “listen” to another lecture, she’d simply close her eyes! Even now, Sangeeta can quietly choose to ignore someone who is unkind to her by not looking at them.
When Sangeeta gained language, she was no longer in complete isolation. She was able to go to school with hearing children and have friends and share her thoughts and feelings. However, she still needed her mother as an interpreter. The breakthrough came when her mother taught Cued Speech to her classmates. This removed the communication barrier and for the first time, Sangeeta, was able to communicate by herself with others. As a backup, she “always carries a notebook and pencil.”
Although Sangeeta has technology at her fingertips and family and friends who understand her, she is still largely isolated. Because deafness isn’t visible, people are unaware that she lives in a completely silent world. At social gatherings, Sangeeta is often left out of conversations. Although she’s an excellent lip reader, without hand cues, she misses more than half of spoken words. It’s like reading a book where half of each page has been torn off. But Sangeeta doesn’t let this stop her. By her own description, she is “bold and independent and not one bit shy.” She credits her parents for “making the effort to mainstream me into regular school. That is why I am able to mix with both hearing and deaf people,” she says.
Today, at age 35, Sangeeta is a wife and mother, who manages household, childcare, shopping and transportation all on her own. But Sangeeta is aware of her limitations. She will never hear her child’s voice. She “cannot even begin to imagine it.” Sangeeta is careful to “look back every few minutes while walking on the narrow streets of Mumbai” in case a car or truck comes behind her. “I cannot drive a car,” she says, “and I have to depend on my family to interpret for me when others cannot understand my speech.” At times she feels like a “burden,” but her sense of humor always prevails. “I’m the only one in my family who sleeps in peace during Diwali season,” she says. (Diwali is the most popular festival in India, also called the festival of lights, in which people set off firecrackers -- it’s even noisier than the Fourth of July in the United States.)
Sangeeta was born into the perfect family, one who recognized the potential isolation of her silent world, and gave her the tools to prevent that from happening.
