Empowering the incapacitated

How the disabled community in Israel is picking up where the government dropped the ball.

By MAYA ERGAS SHWAYDER
Volunteer and blind man 521 (photo credit: Courtesy)
Volunteer and blind man 521
(photo credit: Courtesy)
The chances of becoming paralyzed from an epidural needle during childbirth are minuscule.
Unfortunately, the chances were not small enough for Michele Thaler, 52, who was paralyzed by such a needle during the birth of her fifth child in 1995.
In her ninth month of pregnancy, she started experiencing high blood pressure, and her doctor decided he wanted to induce the labor rather than having a natural birth, as Thaler had done three times before.
(Her first child, she said, was delivered by cesarean section).
“The anesthesiologist came in, and I asked how long will this [the epidural] last?” Thaler recounts.
“And he said, ‘I’m giving you enough for two hours.’ Well, within 15 minutes I was ready to give birth. And they kept saying to me, ‘Put your legs here, put your legs there,’ and I couldn’t move them.”
If the doctors had been paying attention, Thaler said, they would have seen her in her blood tests that she shouldn’t have taken the needle in the first place; she was at high risk of clotting. At the site where the needle went into the spine, clots formed, weighed down the nerves and eventually crushed them. Thaler finished birthing her son completely paralyzed from the waist down. She’s been in a wheelchair ever since.
Thaler, who moved to Israel as a student in 1985, went on to bear two more children. Now the mother of seven, she speaks in a very calm and matter-of-fact manner about how profoundly her life changed after becoming disabled. “It’s not just the walking. You lose control of your bladder and your bowels,” she says in a phone conversation. “You lose sensation, so you have to be very careful of what’s hot and what’s cold. You have to relearn how to balance. Your sense of where you are in the world is lost.”
And on top of learning how to be disabled, of course, came the duties of being a parent to a newborn and four other children, ages one through six.
In 2003, Thaler got involved with the Center for Independent Living, a social activist group that promotes the welfare and integration into society of people living with disabilities. Through it, she was able to meet, consult with and train other newly disabled mothers on how to remain confident and in control in their new situations.
For parents with disabilities, government services are particularly scarce. The Malben/JDC estimates there are around 336,000 parents with disabilities in Israel who have children under the age of 18. Foster parents of children with disabilities are severely short on funds and support. All over Israel, disabled people are still regarded with stigma and shame, says Avital Sandler-Loeff, director of the JDC’s branch of Israel Unlimited, an empowerment program for the disabled.
When compared to other Western countries, Israel is lagging when it comes to rights and accessibility for people with disabilities. Much of the government’s budget aims to support people with disabilities who are living in institutions. But according to Ran Rovner, a spokesman for Malben/JDC, only about 1 percent of the disabled population in Israel lives in an institution.
“There aren’t many resources going to the wider population,” he says. “These people can have huge difficultly living on their own.” He adds it can take up to six months for a newly disabled person to begin received government benefits, and many of these people are so severely disabled that they are unable to work. Then comes the lifetime of relying on the state, on parents, and on caregivers for basic everyday needs, Rovner says.
Furthermore, most government programs are aimed at people who are born with a disability, and those benefits run out once a person turns 21.
The problem here, sand Sandler-Loeff, is that 80% of people with a disability become disabled during their adult life. For example, there’s Avi Yishai, 46. A native of Jerusalem, he had been performing in concerts as a drummer all over the world since the age of 16. He even appeared in New York on Broadway, representing Israel in the New York International Festival of the Arts. When he was 31, doctors found a tumor on his brain stem. The subsequent surgery to remove the malignant mass left him unable to speak and his legs paralyzed.
The first thing he thought when he awoke from surgery, he says, was “I’m afraid to lose my wife.” The second thought was how much his world had changed.
“The reality I remembered was not the same,” he said.
“I couldn’t speak. I couldn’t balance. I was paralyzed.”
Three years later, as Yishai was relearning how to speak and walk, his wife did leave him.
The exact number of disabled people living in Israel is somewhat unclear: Malben/JDC, one-third of the partnership that runs Israel Unlimited, puts the number at one million. The Ruderman Family Foundation, another third of the partnership, estimates a more modest 17.9% of the population, or around 700,000 people. The third partner is the government, which has pledged to pick up any new JDC/ Ruderman programs that they have deemed most successful and implement them in health care policy.
All three partners also share in the budget for Israel Unlimited – amounting to about NIS 1 million.
“Approximately 25% of the Israeli workforce has a disability,” Sandler-Loeff says. “There is a strong correlation between having a disability and living in poverty.”
Moreover, many old buildings in Jerusalem and all around Israel are inaccessible for the handicapped. In fact, says Sandler-Loeff, the vast majority of buildings in Israeli society – in both the Jewish and Arab sectors – are still inaccessible. Recent regulations passed by the Construction and Housing Ministry in December 2012 require all new buildings to be accessible, and the ministry says it will not approve any new buildings that are not accessible.
But this alone hasn’t solved the problem.
Shira Ruderman, the Israel director of the Ruderman Family Foundation, says her foundation and Malben/JDC are trying to challenge the government status quo, even as they bring government agencies on to the project. Ephraim Gopin, a spokesman for the foundation, says they “have decided to be a leading voice on this. If 20% of the population has a disability, that affects everything. If they’re not going into the workforce, that’s a burden. There are money issues, there’s a societal issue. They shouldn’t be on the fringes, they should be included.”
“The joke at the Center for Independent Living in Jerusalem is that the disabled community is a community that anyone can join at any minute,” Sandler- Loeff says.
“Seriously, imagine if you were 34 years old, you’re married, you have a child, and suddenly your life is totally changed. How you think about yourself changes, how you think about your children changes,” says Rovner. “How your children think about you changes. Many parents with disabilities feel they’re not good enough.”
Tsufit, 37, a Rehovot resident who declines to give her last name, was paralyzed 11 years ago when a bus crossed the street at the same time that she was crossing. “He won,” she jokes. “I broke his windshield, but he won.”
At the time of the accident, she had a year-and-a-half-year-old boy, and her husband was away in the army. Since then, Tsufit has been transitioning between sitting in a wheelchair and getting around on crutches.
She’s also given birth to two more children and has been active with similar programs for which Thaler volunteers.
“I was working full-time and a mom,” she says.
“And now I can’t do things like lift my kids, or give them a bath.” Tsufit says she was lucky her parents were around to help out while she recovered. “My father would move mountains for me.”
Ima l’Ima, or Mother to Mother, is a mentoring program with which both Thaler and Tsufit volunteer.
Tsufit joined about two and a half years ago, she says, and her self-confidence has soared. “Ima l’Ima gave me a lot of self-confidence, that it’s okay to be disabled and be a mom,” she says. “Your kids will still be okay. There are other ways to discipline and to communicate. You can be a great mom even though you are disabled.”
Thaler works as both a trainer and a mentor with Ima l’Ima, in which a group of women with older and adult children train other women to mentor new mothers or newly disabled mothers. “We provide support and help them to be able to function and feel confident in their role as mothers,” Thaler says.
Besides peer counseling programs like Ima l’Ima, the CIL runs training programs for everything from Hebrew-language skills to jobs skills to how to run a small business, and holds community activities to promote social change and social acceptance in the neighborhood.
Yishai, for one, says he found a new community here.
Speaking in a somewhat warbly tone with a slight stutter, he says that disabled rights have now become a major part of his life’s purpose. “I had to find a different way to express myself [after the surgery],” adds Yishai, who still performs and experiments with different electronic instruments.
“Now my music is more personal.”
“This is not just a community center,” says CIL coordinator Henia Schwartz. “Here people find empowerment.”