A Dramatic Life with a Down Syndrome Daughter
Varda Ben-Hur is a big woman with a big personality — enough to fill a home, a stage, a book or two. A chubby little girl in Israel’s thin austerity years; a too-round teenager; an outrageously zaftig young woman who thought marriage and motherhood would make it all right.
Varda Ben-Hur is an actress, an author, a divorced mother of two. She defines herself with the words of Reb Nachman of Bratslav: “There’s nothing more whole than a heart that’s broken.” Her mother was a sabra, her father a Holocaust survivor from Poland. “You’re a number (hevramanit),” he’d say, “like me — a partizaner, a fighter.” Her fighting spirit stood her in good stead as she battled her way through her unhappy childhood and teen years, through her short marriage and the birth of two daughters, the first with Down Syndrome.
“I left my baby in the hospital for a month,” Varda says sadly about her elder child. It was guilt, not love, that finally convinced her to bring little Netta home and raise her. And a sense of obligation: “I decided it would be very hard to bring her up, but it would be even harder to desert her.” Life was a constant struggle, fighting with teachers, with the medical system, even with the army when Netta eventually tried to volunteer for a special unit.
And being the parent of a child with Down Syndrome hardly transformed Varda Ben-Hur into her fantasy, the perfect mother with the perfect life. “I acted the part,” she says ruefully, “but I was ashamed of Netta and felt like I was still damaged goods myself, not normal.” She moved to Jerusalem where the medical experts were concentrated, followed their advice, and says she learned to love her daughter from the baby’s Moroccan grandmother.
When Netta was five, Varda decided to try to have a “normal” child, praying every day for a kid who’d be easy, simple, “like everyone else.” Her miracle finally happened: she gave birth to a healthy daughter named Or (light). Life, however, was not yet perfect. “With all my ‘feminism’ and assertiveness,” Varda remembers, “on the ground I did whatever my husband wanted.” They divorced when Or was two, and Varda learned the hierarchy of single motherhood in Israel.
“There are different degrees of single mothers,” she explains. “ If you’re a welfare mother, you don’t get much respect. If you’re a selfsupporting professional mom and your kids are okay, then you’re higher up the ladder; people remind you to take care of yourself. And if you take care of your own ‘special’ kids, that’s another whole level: you become sanctified, and you’re always working to preserve your sainthood.”
Through it all, it was acting, spiced with her acerbic wit, that kept Varda going, a survival mechanism from childhood. An alert teacher had suggested she join an experimental youth troupe, and for the next five years she studied and performed street theater — Brecht, Shakespeare, things that were barely known in Israel at the time.
She’d also gained more weight by the time she graduated from her religious high school. Her father had fought the Nazis, and at 18 she was desperate to join the Israeli army, but even more desperate at the thought that Zahal wouldn’t be able to find a uniform big enough for her. So, ignoring her family’s shame and disappointment, she got an exemption from the army and went straight into the peace movement via the “Gypsies,” a troupe of creative young Arab and Jewish actors who performed in kibbutzim, Arab villages, and towns and cities throughout the country.
Marriage and childbirth almost ended her budding career, but divorce sent her back to work with a vengeance. She taught drama to schoolchildren, then adults. She acted on television and on stage, and found, with amazement, that she was living better than she had before her divorce. For the first time in her life, Varda Ben- Hur began reaping respect, the singularly Israeli respect for a successful single mother. And three years ago she entered a competition for literature for retarded adults; her book On Love, with Netta as its heroine, was published. “Being Netta’s mother is an open wound — but I also know today that she has been my teacher,” Varda says. “She’s amazing in her insights, and I’m proud of her.”
With humor and whimsy, Varda has put her heavy life on stage in “Are You Happy Yet?” a short Hebrew play. Three young men back her up musically and dramatically, romancing her and the audience with flamenco, blues, klezmer, and almost everything in between. Varda takes the thin world to task and laughs at herself, a fat 54-year-old, who’s finally where she wants to be, or almost. “When you’re young and fat, it’s a nightmare to walk down the street. At my age, no one expects you to look any other way.”
Is she happy yet? “I’m not whole, not perfect,” she declares, returning to Reb Nachman, “but I’m ready to start living. To sit comfortably in my chair, and if the chair isn’t comfortable, to ask for a different one.”
