Empowering the Incapacitated

The chances of becoming paralyzed from an epidural needle during childbirth are miniscule, many doctors claim. Unfortunately, the chances were not small enough for Michele Thaler, 52, who was paralyzed by an epidural 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 was delivered by Caesarean-section.)

“The anesthesiologist came in, and I asked how long will this (the epidural) last?” Thaler recounted. “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 in her blood work 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 even 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 bowel,” she said 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 newly disabled, of course, came the duties of being a parent to a newborn and four other children, ages 1 through 6.

In 2003, Thaler got involved with the Center for Independent Living, an independent 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.

Particularly for parents with disabilities, government services are scarce. The Joint Distribution Committee, a leading Jewish humanitarian assistance organization, estimates there are around 336,000 parents with disabilities in Israel with 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, said Avital Sandler-Loeff, director of the American Joint Distribution Committee’s branch of Israel Unlimited, an empowerment program for the disabled.

When compared to other Western countries, such as the United States, 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 the JDC in Israel, 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 said. “These people can have huge difficulty living on their own.”

He added it can take up to six months for a newly disabled person to begin receiving 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 said.

Further, most government programs are also 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 percent of people with a disability will become disabled during their adult life.

For example, there’s Avi Yishai, 46, a native of Jerusalem, who has been performing in concerts as a drummer all over the world since he was 16. He even appeared in New York on Broadway, representing Israel in the New York International Festival of the Arts.

At age 31, doctors found a tumor on his brainstem. 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 said, 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 re-learning how to speak and walk, his wife did leave him.

The exact number of disabled people living in Israel is somewhat fuzzy: The JDC, one-third of the partnership that runs Israel Unlimited, puts the number at 1 million. The Ruderman Family Foundation,  another third of the partnership, estimates a more modest 17.9 percent 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 deemed to be effective at meeting the needs of the disabled.

“Approximately 25 percent of the Israeli workforce has a disability,” Sandler-Loeff said. “There is a strong correlation between having a disability and living in poverty.”

Further, many old buildings in Jerusalem and all around Israel are still inaccessible. In fact, said Sandler-Loeff, the vast majority of buildings in Israel — in both the Jewish and Arab sectors –  are still inaccessible. Recent regulations passed by the Israeli Housing Ministry in December 2012  require all new buildings to be handicap accessible.

Moreover, the Ministry of Housing and Construction says it will not approave any new buildings that are not accessible for the handicapped. But this alone hasn’t solved the problem.

Shira Ruderman, the Israel director of the Ruderman Family Foundation, said Ruderman and the 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, said it has “decided to be a leading voice on this.”

“If 20 percent 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 said “Seriously, imagine if you were 34 years old, you’re married, you have a kid, and suddenly your life is totally changed.”

“How you think about yourself changes, how you think about your children changes,” said Rovner. “How your children think about you changes. Many parents with disabilities feel they’re not good enough.”

Tsufit, 37, a resident of Rehovot who didn’t wish to give her last name for privacy reasons, was paralyzed 11 years ago when she was hit by a bus as she was crossing the street. “He won,” she joked. “I broke his windshield, but he won.”

At the time of the accident, she had an 18-month-old boy at home, 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 in disability advocacy groups.

“I was working full time and a mom,” she said. “And now I can’t do things like lift my kids, or give them a bath.” Tsufit said she was lucky her parents were around to help out while she recovered. “My father would literally move mountains for me.”

Ima l’Ima, which means “Mother to Mother” in English, is a mentoring program with which both Tsufit and Thaler volunteer. Tsufit joined about two and a half years ago, she said, and added that her self-confidence has soared since getting involved.

“Ima l’Ima gave me a lot of self-confidence that it’s okay to be disabled and be a mom,” she said. “Your kids will still be OK. 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. They provide support to help the women “function and feel confident in their role as mothers,” Thaler said.

Besides peer counseling programs like Ima l’Ima, the Center for Independent Living runs training programs for everything from Hebrew language to job 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, said he found a new community here. Speaking in a slightly warbly tone with a small stutter, Yishai said that fighting for disabled rights has now become one of his major causes.

“I had to find a different highway to express myself [after the surgery],” added Yishai, who still performs and experiments with different electronic instruments. “Now my music is more personal.”

“This is not just a community center,” said Henia Schwartz, the center’s coordinator. “Here people find empowerment.”

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