Tzila Seewald is thirty one, happily married, mother to two adorable sons, and works as a successful social worker. Apparently, she’s just like hundreds of other women. Except that she isn’t.
Empowered by Love
Born in 1986, it wasn’t until Tzila was two years old that she was diagnosed with profound deafness. A year later, she became the thirteenth patient at NYU to be fitted with a cochlear implant. Although Tzila could now hear, she still had a long road ahead of her. With limited verbal and auditory skills, she had to undergo intense speech therapy. Today, there are over 67,000 individuals in the U.S. with a cochlear implant. But since Tzila was one of the pioneers, her therapists didn’t realize that while she was picking up flawless enunciation, she wasn’t picking up the rules of grammar. “I still struggle with grammar, despite the hours I spent in speech therapy,” says Tzila. When she was eighteen, Tzila underwent surgery for a second implant. However, since this implant was done when she was older, she never adjusted comfortably to the sound produced. “On Shabbos and Sunday mornings, I sometimes take a break from all the noise. I savor the silence because this was how I was born,” says Tzila.
Thanks to encouraging parents and friends, a supportive shul, school and neighborhood, Tzila grew up feeling like she wasn’t any different from anyone else. “I just saw my deafness as part of me and nobody said otherwise,” she says. Empowered with this support, Tzila developed the healthy self-esteem that still shapes her life as an adult.
But Tzila’s tests weren’t over. At seventeen, she began taking driving lessons like all her friends… until it became obvious that she had trouble with her peripheral vision. Tzila was diagnosed with Usher syndrome type 1F, which meant she could expect an incremental loss of vision and balance in addition to her hearing challenges. At first, Tzila was initially inconsolable. But her parents were behind her. “My parents pushed me to be great. They didn’t let me dwell on sadness and depression. I fought them so many times, but they believed in me and told me so many times,” says Tzila.
The Wide World
In high school, Tzila’s social circle began to widen. And this brought her into contact with people who weren’t as accepting as those she was used to. Ninth grade summer campers initially branded Tzila as the “deaf girl” – until she proved herself to be every bit as fun-loving and capable as her peers. Later, the expected babysitting jobs most girls her age got didn’t pan out – because parents weren’t willing to trust her. Ironically, Tzila would have been a more conscientious babysitter than any of her peers. Knowing the limitations of her hearing, she would have kept the kids under her care in sight!
Post high school, in seminary, she learned to deal with people who weren’t always sensitive to her needs and to advocate for herself. These essential skills helped her through college. At the Helen Keller Foundation, she learned to touch type and how to use a walking stick. “Unlike a cochlear implant, the walking stick is easily noticeable. I feel that it obscures the real me, by labeling me as blind,” says Tzila. But there are advantages. “If I step on someone’s toes in the subway, they apologize to me. And people often allow me to skip long lines at ticket booths and supermarkets,” Tzila says.
After graduating Stern College, Tzila enrolled in Hunter College to earn a degree in social work. Her first internship was at a school in the Bronx. While the kids loved her, her supervisor was out to make life difficult. She yelled at her regularly for not understanding her. And, unbelievably, she assigned Tzila, and only Tzila, the demeaning task of cleaning her office. “People with disabilities are very vulnerable because they are easy to target,” says Tzila. Yet, she soldiered on, determined to get her Masters and prove her worth.
Her internship at a public school for the deaf in Manhattan should have been better. After all, her supervisor also had a cochlear implant. But there the supervisor latched on to Tzila’s ongoing struggle with English syntax. Claiming that Tzila should work harder in this area because she herself had worked hard, the supervisor said she probably wouldn’t pass her. “She destroyed me in that moment,” says Tzila. But Tzila kept going. Adept at lip reading and interpreting facial expressions and body language, Tzila had insights into the children under her care that the supervisor missed. “One of the kids was displaying psychopathic behavior. I mentioned this to the supervisor but she dismissed my opinion. Two days later, when the principal expressed the same concern at a meeting, the supervisor claimed she had no idea about such behavior. It was too much – Tzila quit.
My Second Half
Tzila had other things on her mind… she was getting married. “I met Tzvi when I was twenty three. I had been dating for three years and in all that time I met only five other men,” says Tzila, revealing a little about the challenges that a person with a disability faces when entering the shidduch scene. “I heard a lot of stories about Jewish deaf singles and their bad experiences,” she says.
Not that anyone has it easy. “After a friend’s engagement party, at which I had worked hard to rid myself of any jealousy, a different friend told me she was jealous and worried that she’d never find her second half. She was younger than me and didn’t have a disability. But I comforted her. At that point, I decided that I didn’t want to be like her. I wanted to enjoy my life and I didn’t need to be married to do that. Marriage, I decided, is simply a milestone that many people, but not all, go through,” says Tzila. The next day, Tzvi, a hearing man who had heard about Tzila’s many qualities, was suggested to her.
With parental support, after a break of one semester, Tzila did return to school. As an intern at Bikur Cholim of Boro Park, she found a supervisor who recognized her hard work and innate talent to understand others. In May 2012, Tzila graduated with a MSW.
Helping Others to Grow
In the aftermath of Hurricane Sandy, Tzila worked with victims in OHEL’s Project Hope division. That opened the door to another position at OHEL’s Kadimah PROS, a Medicaid funded program that provides people with psychiatric disorders with individual and group therapy sessions to help them to reach their recovery goal. Here, much to the astonishment of the interviewer, Tzila spoke about the advantages of her disability. “My cochlear implants help me to connect with my clients. When they speak about their challenges and the accompanying stigma, I tell them that I am deaf. They know that I can relate to everything they talk about,” she said. Not surprisingly, Tzila got the job.
“I use my challenges to empower my clients,” says Tzila. “One client, a woman with self-esteem issues, speaks unclearly. Since I couldn’t hear her, I asked her to speak up for my benefit. I told her that this practice would make it easier for her to speak up in the company of others. It did. Other clients work on improving their patience by being patient with me,” she says. “Although I may not speak as clearly as other social workers, my clients understand me better than them. And that’s because I understand them. Not only because I have learned to interpret facial expressions and body language… but because the challenges I face have opened me up to understanding, really understanding, the challenges they face,” says Tzila. Not surprisingly, Tzila has become a role model for some of her clients.
Not all clients are model clients, however. “Sometimes a client yells at me because I don’t understand him or her. I am aware enough to know that they are using my deafness as an excuse for their behavior. In fact, they are projecting their issue onto me. Rather then get upset, I try to figure out why they are so frustrated,” Tzila says. Overall, it is a win-win situation: either the client is gaining tools or Tzila is gaining insights into how to further help the client.
The Challenge within the Challenge
For Tzila, like anyone facing a disability, the challenge doesn’t end. While cochlear implants do open up a deaf person to the hearing world, crowd scenes are challenging.
“In a crowd, sounds are transmitted unclearly and I can’t lip read several people simultaneously. In addition, not everyone is in my line of vision,” she says. Consequently, self-advocacy skills are a must. “At work, I advocate for myself all the time. If my boss speaks quietly, I always ask her to speak up without feeling embarrassed. I do that during team meetings too, because I have a right to hear everything. I don’t mind that I sometimes make my coworkers and boss repeat themselves… I need to be included because that is my right and because anything I miss could be something important. When it comes to writing, Tzila, who still struggles with grammar and syntax, sometimes has to enlist the help of her boss or coworkers. But it’s a win-win situation because she helps them out in other areas where she is stronger.
Now that Tzila is an empowered and successful adult has she reached a plateau where she is comfortable with her limits? “Unfortunately, no,” Tzila answers. “Since high school, once in a while, I have moments when I feel down and start to doubt myself.”
How does Tzila cope?
“I acknowledge the feelings, let them linger for a while and then fight back. On bad days, I work at ‘projecting confidence.’ I try to give off the feeling that I am confident in myself even when I’m not. The outcome is that I begin to believe in myself again. I get back into my normal routine and then I’m okay,” she says. “Most people describe me as positive and assertive. I like to keep it that way.”
As an adult with well-developed self-advocacy skills, has she reached the place where discrimination has lost its sting? “No. Discrimination hurts no matter what. Some days, I have plenty of patience with people who don’t know how to relate to me. Other days, I struggle with such people.
A Final Word
Census 2000, the twenty-second United States census, counted 49.7 million people with some type of disability. That’s nearly one in five. If you are one of those millions, then Tzila has a message for you: “Just be yourself. Nobody cares that you are trying to be like ‘them,’ and they won’t notice your effort anyway. Remember that other people are just like you – they also want someone to listen to them, to feel loved and wanted. If you can give them that, they most likely won’t see you as ‘disabled.’ So rise to the challenge.”
Be like Tzila… reveal the ability in the disability.
*Are you interested in helping Tzila and others like her? The Usher 1F Collaborative funds medical researchers aiming to find an effective treatment to save or restore the vision of those with Usher Syndrome type 1F. Visit their site at usher1f.org