For Israel’s disabled community, an oasis in the desert
THE TIMES OF ISRAEL – Sep 23, 2013
By DEBRA KAMIN
OFAKIM — Rachma is a nearly five-year-old girl, a tiny bundle of a child with dark eyes and a tittering laugh. She can’t really walk or talk on her own, but she is alert, sitting up and offering a gurgle of incoherent conversation. Her hands, which curl in the trademark mangle of a child suffering from serious developmental disabilities, can these days wrap themselves around a spoon so she can feed herself. This is progress.
Rachma hasn’t seen her parents in several months, a fact that her caretakers at ALEH Negev-Nahalat Eran, a rehabilitative village for Israeli citizens with severe disabilities, say is sadly mundane.
Rachma is Bedouin, and when she was born with a gnarled spine, sick lungs and a slew of other ailments that the institute won’t disclose, her parents weren’t sure how to handle her. They brought her to ALEH Negev, one of four ALEH campuses in Israel where children with physical and mental disabilities receive round-the-clock, long-term care, and they essentially left her in the hands of its nurses and staff. Now, ALEH staffers say, they visit at most a few times a year.
Among Bedouin children in Israel, 9.1 percent suffer from disability or chronic illness, compared with 8.3% among other Arab children in Israel, and a rate of 7.6% among the state’s Jewish children. When it comes to severe disabilities, Bedouin children suffer at nearly twice the rate of Jewish children, and occurrences of low infant birth rate, as well as Down Syndrome, are worryingly high.
Inbreeding, lack of resources and poor maternal education have formed a deadly trifecta among Israel’s Bedouin community, and the children of this once nomadic sect are suffering the consequences. But while diagnoses are high, healthcare is limited, passing the burden of care for kids with autism, mental retardation and development difficulties onto parents who cannot possibly provide for such needy offspring on their own.
So many of them, like Rachma, end up here at ALEH Negev, a modern village — built with the money of Diaspora Jews — that gleams like a spaceship in the middle of the southern desert city of Ofakim.
Ofakim is sand-choked and barren, an expanse of flat, brown vistas spilling southward toward the Negev and east all the way to Beersheba. Driving down here in the heat of summer can feel like pulling up to an abandoned planet, a tough, impoverished place where hopes run as dry as the dirt around you. While the border with Gaza is practically within arm’s reach, not much else is.
But hang a left off of Route 241, past the cluster of roundabouts and housing developments that function as the city’s center, and the scene immediately shifts. ALEH Negev is a cluster of shining, state-of-the-art buildings, Japanese hanging gardens, shaded walkways and even a koi pond. Smack in the middle of an Israeli nowhere and built from scratch with a combination of charitable donations and government grants, this is the largest of the country’s four ALEH campuses (the other three sit in Gedera, Jerusalem and Bnei Brak). All four provide therapeutic, medical and educational care to Israeli citizens, both children and adults, with devastating physical and cognitive disabilities. ALEH Negev, however, has the most stirring back-story.
Its chairman is Maj. Gen. (res) Doron Almog, one of the most celebrated figures in the history of the Israel Defense Forces. Almog helped lead the famed Israeli hostage rescue at Entebbe in 1976 and for years after, as head of the IDF’s Southern Command, foiled countless attempts to launch terror attacks in Israel.
The government rewarded Almog for his service with a plum government post, and these days he serves as chairman of the committee to implement the Cabinet’s plan for the Bedouin Negev. Most of his week nowadays is wrapped up specifically in the controversial Prawer Plan, a part of the government’s broader plan for the Bedouin. It seeks to evacuate thousands of Bedouin from state-owned land they say they have an ancestral claim to, and resettle them in cities and urban areas.
The Prawer Plan has caused explosive protests, with its supporters touting it as a means for the Bedouin to step into the future, and its opponents saying that its implementation will bury the Bedouin way of life for good. If put into action, it will mean that about 30% of the Bedouin in Israel will be forced to move into Israeli-approved locations, and those who refuse will be denied any compensation.
It’s a complicated issue, one that has been the subject of all sorts of criticism and scrutiny. Much of the pressure, from leaders on both sides of the topic, falls on Almog’s soldiers.
Once a week, though, for half a day, he leaves it behind. On those days, Almog comes to ALEH and focuses on the children there, children who have already, for all intents and purposes, been sent out of their homes. The vast majority of those children are Bedouin.
Almog bears a difficult and definitive family legacy, having lost his brother Eran, a tank commander, during the Yom Kippur War, as well as his son, also named Eran, to Castleman’s disease.
The elder Eran, it is believed, was abandoned by his fellow soldiers in the face of approaching enemy forces, and bled out alone in his tank in a slow, agonizing death. Years later, when Almog’s first son was born with severe autism and developmental handicaps, the general decided to not only name the child after his lost brother, but to apply a mantra he had adopted in the military to his philosophy for the child’s care.
“The same value that leads us in the military, to never leave a wounded soldier behind, we need to say over and over to ourselves,” Almog says. “We have the statement, kol Yisrael arevim zeh l’zeh (all Jews are responsible for one another), but in life, the biggest slogans are tested on the ground.”
ALEH Negev was built in 2003 for an estimated price tag of $42 million, the vast majority of which came from Jewish donors abroad. The massive facility boasts a hydrotherapy center; a petting zoo hopping with rabbits, chinchillas and turtles; a horseback riding center; and a Snoezelen, a radical, controlled multisensory room awash in white leather and colored lights. The place is a dream home for those with severe disabilities, and in many ways it was built from scratch so that Almog’s son Eran could live in peace and happiness among his peers.
Eran was the center’s first resident. He spent four years on its manicured, Oz-like grounds, which are filled with only edible plants like rosemary and mint. He died in 2007, at the age of 23.
“Eran was the greatest professor of my life,” says Almog. “He taught me this lesson about the ego… Many parents have a great deal of shame about bringing a disabled child into the world, a child who will not supply any pride for the parent, who will never be the professor, doctor, or lawyer, never be the Jewish mother and father’s dream. And they’re ashamed. But by choosing the shame and the guilt, what are you doing? You’re protecting yourself and your own ego.”
Any visitor to ALEH Negev will likely agree that a lot of things are right about this controlled community. It’s a manufactured environment, flush with funds from Almog’s relentless stumping, and filled with photos of the younger Eran.
The center provides full-time residential care for both adults with disabilities who are older than 20 and a number of highly dependent children. In tandem, the center offers dental and medical clinics for Negev residents with disabilities, who travel to the facility for regular treatments, as well as therapy (hydro-, physical, and other varieties) for locals in need of all shades of rehabilitation. Two kindergartens for non-disabled area children are held on the grounds in order to encourage the youngsters to be comfortable around those with disabilities; and to boost the 7:1 staff ratio, the center hosts volunteers from a nearby prison, as well as soldiers from a local army base and executives from various high-tech companies.
“There is a reason that we created the village as a microcosm of a normal world,” Almog says. “We try to put everything here, including entertainment. The people here are never going to fly to Switzerland to go skiing or to spend a weekend in Cyprus. They are here. For them, this is their whole world.”
Beneath the surface of all of the stations and activities of this place, Almog says, is a gurgling chug of love, a water table that sits high and thirsty and truly sets the place apart.
“Our vision is love,” Almog says. “Love this disabled child. He is the purest one. He is the most vulnerable, and he never did wrong to anyone. At the same time, he needs to be protected, to be watched, to never be left behind or ignored.”