‘They simply sit in their places and say “Shema Yisrael”’

Resources for Israel’s disabled people fall short in wartime.

By MIRIAM KRESH
Parents of disabled children and other young children have to choose who to take to the shelter first. (photo credit: Courtesy)
Parents of disabled children and other young children have to choose who to take to the shelter first.
(photo credit: Courtesy)
For disabled people and their families, war is like moving through several layers of hell.
Mel Mahler, 50, from Vermont, suffers from multiple sclerosis. She, her husband, and her adult and teenage sons live together in Moshav Shokeda, near Gaza. Her daughter is in the army. She describes what it’s like to be physically housebound with no shelter.
“We get rocket attacks mostly at night, although on a heavy day it could be 10 to 15 times. Last night it was every two to three hours. None of us has had a night’s sleep in a week. There’s noise all the time: rocket attacks, artillery fire, helicopters, jets. This morning there was an alert, and I wasn’t able to get up – I was stuck in bed. My MS is much worse in the mornings.
I wake up and my legs don’t work, so I can’t get out of my room. If there’s a red alert, I just ride it out in my bed. I put a pillow over my face. Hopefully it’ll give me some protection if glass shards start flying.”
Her husband and adult son work from home and theoretically could get her to the hall, which is the family’s only shelter. But she prefers that they use their 15-second warning time to reach the hall, rather than hoisting her out of bed. She reached this decision through an age-old rationale: Let the weaker not jeopardize the safety of the others.
Mahler speaks of it modestly, as if weighing such factors and coming to that conclusion were no big deal. She rationalizes: “My room is on the side of the house farthest from Gaza, so it’s relatively safe.
Rockets would fall into the front of the house, not my room. The biggest concern is a rocket landing behind the house and the explosion coming back toward me.”
As we are speaking, a siren sounds, and she conducts the telephone interview through the multiple attack. Asked how she’s feeling, she says, “It’s complicated; it’s not any one thing. It’s scary – I’m not going to say it’s not. But we’re more able to take it in stride now. The monotony is hard to take. And sometimes,” she confesses in a light tone, “we just get really tired of each other. Depending on how tired we are, how little sleep we’ve had, it can feel like being in prison.”
Sometimes she has to forgo normal things that people ordinarily take for granted. For instance, she can’t wash her own hair; her caretaker does it for her.
“I’m lucky that my caretaker comes every day, war or no,” she says. “We’re afraid for me to spend much time in the bathtub in case of a rocket attack, so I get cleaned up fast, but haven’t had my hair washed for a couple of weeks.”
There’s also an issue with getting foods Mahler can tolerate. “When I have an MS flareup, I can’t eat a lot of foods. It becomes a problem when none of the local stores carry foods I can handle.”
Isolation is an issue that can take many forms.
Mahler explains that the heart of loneliness isn’t in the moshav’s physical remoteness; it’s in not having a common language with people anymore unless they’ve shared the wartime experience.
“We hardly contact people who aren’t in our situation,” she says. “I can’t talk to outsiders, even other Israelis who aren’t often bombed. I live in a different place now. I can’t communicate with people who haven’t lived through this. I’m starting to get tears in my eyes... I don’t know how to explain it. I have friends who call and ask me how I’m doing, and I say, I can’t talk to you. The only thing I can think about is the war.”
Asked why she stays on the moshav with the constant bombardments, she replies, “I have friends who actually have room for all of us and have offered to host us. So far it doesn’t feel like what we should do.
Most of our neighbors are staying; it’s our home, and we don’t want to leave. This is where I’m supposed to be.”
She reveals that her greatest hardship isn’t the fear, the monotony or the isolation.
“I can’t do what I used to do when I was able-bodied. I used to take care of my kids. Now my kids want to take care of me. That reversal is the hardest thing for me,” she says. “It’s like we’re always grieving; it’s a constant subtext of everything that goes on. I rarely hear anyone talking about being a disabled parent and how it affects your relationship with your kids.
It’s the elephant in the living room: It’s there, but we don’t talk about it. Now that my daughter, who used to take care of me most, is in the army, there just isn’t enough to go around.”
Four-and-a-half-year-old Itamar Tzvi Sofer of Ashkelon fell sick at age one with a salmonella infection that affected his brain. He can’t walk and doesn’t communicate, although his parents insist that he feels the love when they hug him. He is prone to convulsions.
The siren brings one on, every time.
His father, Reuven, says, “Our lives changed completely when Itamar got sick. My wife quit work [as office manager in a soldiers’ hostel] in order to stay home with him. He’s like a baby inside the body of a five-year-old and has to be watched all the time. He puts everything in his mouth. You have to make sure he doesn’t swallow anything.”
Painting a fuller picture, he continues: “We have two daughters, one six years old and a baby six months old. None of us has a normal life, even in peacetime. Going on vacation to a hotel is impossible, because we can’t leave Itamar behind, and we can’t take him. Even finding a way to go out on a date with my wife, to spend some time together, is very hard to arrange. When Itamar goes into a convulsion, he has to be watched carefully. If it lasts longer than a minute, we have to rush him to the hospital.”
With frequent siren alerts that launch such convulsions, it’s easy to see why the Sofers are physically bound to him at all times.
Itamar spends most of his day in a ball pit, where there are physical limits and he can move around without hurting himself. It’s placed in the living room, being too large to fit in the reinforced safe room. When the red alert siren goes off, his mother grabs the baby and is obliged to leave Itamar in the ball pit.
“He already weighs 30 kilos,” says Reuven, “and my wife weighs 60. She has 15 seconds to get the baby and herself into the safe room – how can she pick him up at the same time?” It’s the same triage-decision predicament that Mahler and her family face.
Disabled adults in Itamar’s condition are eligible for a government stipend of NIS 4,000. This allows them to employ a caretaker. As Itamar is still underage, the Sofers pay for his caretaker out of their own pockets, in addition to the diapers, medications and other special needs.
“If we decided to institutionalize him, the government would pay NIS 17,000 to maintain him. But we want to keep him with us, at home. We’re asking only a quarter of that NIS 17,000. We’re not victims, we’re not pitiable – we’re people who want to live as normally as possible. My wife wants to return to work. Let’s say she’s still taking care of Itamar 10 years from now – he’ll be 14, almost 15, and she’ll still have to bathe him. How would that be for a religious mother? We’re very strong and won’t break down, but we should receive our rights,” Reuven says.
A quick phone interview with Dafna Azarzar, director of the Ahava organization for disabled people in Israel, reiterates the difficulties of families with disabled children.
“I get dozens of calls every day from families who are under fire,” she says. “Ashkelon, Ashdod, Gaza, Sderot.
Families with children in wheelchairs or with autism or other forms of communication disorders. Many of them lack shelters. Disabled adults and children have nowhere to go when the warning siren blows. They simply sit in their places and say [the] Shema Yisrael [prayer]. It’s a very serious problem, and it’s the government’s responsibility to address it. This weak population is under-served. They’re no different from other citizens in Israel, and someone has to take their safety in hand.”
Azarzar, waiting for a hearing at the Knesset while we speak, suggests that mobile shelters, such as the concrete pipes provided for the Sderot community, be placed next to homes where disabled people live.
She also feels that disabled people who can be moved should be moved to hotels or other, safer places.
“I employ two disabled people,” says Amir Kalifa, warehouse manager at the hi-tech park at Kanot, near Gedera. “One has difficulty walking, and the other is what people call ‘slow.’ They show up every day, in spite of the sirens. When there’s an alert, they get to the shelter before even I do.”
Miriam Fuks, a social worker at the Gvanim Association for Education and Community Involvement in Sderot, works with the mentally disabled. She says her clients “are taking the rocket attacks and sirens like the rest of the community. Everyone’s jumpy, but on the whole, fairly calm. They’re mildly disabled, which makes a big difference in their ability to withstand what’s going on.”
Fuks claims that when she asks her clients how they’re feeling, most answer that they’re not afraid and that they get to their shelters in time.
“It’s uncomfortable to sit on a mattress in a shelter, instead of being at home, but on the whole they’re no more anxious than any able person gets when they hear the siren,” she says.
It seems that the example the community sets at large sets the tone for the intellectually challenged people in the community.
As with everywhere else in the country, getting to the shelter in time is a problem for the disabled and the elderly. One blind woman to whom Fuks spoke said she hadn’t left her house in two weeks for fear of getting caught outside during an attack. Mobility- challenged people have the same fear.
“They’re clumsier and take longer to get to shelter.
You have to keep an eye on them and make sure they get inside,” she explains. “Another woman I know, an older one, takes taxis everywhere because she’s convinced that she’d never get off a bus on time.”
Some deaf people have been given beepers that vibrate when there’s an alarm, but they don’t always work perfectly, so some deaf people have been staying home, too.
If one accepts this war as a short-term crisis, says Fuks, the solutions that the disabled community of Sderot has are sufficient. “Obviously if this were the Blitz, lasting six years, other solutions would have to be found.”
Below are links to emergency instructions for the disabled community in all its categories.
The Home Front Command’s website has a page with instructions for special-needs people in case of rocket attacks. Included are safety tips; directions on how to prepare a secure room and what essential devices or objects should be in it; and categorized instructions for people with chronic medical problems and for deaf, blind, housebound, mobility-challenged and mentally challenged people: www.oref.org.il/10660-en/Pakar.aspx.
There are call centers at the Welfare and Social Services Ministry (118) and the local authorities (106) for the general community of handicapped and elderly residents.
Caretakers of people with intellectual challenges or dementia, and those suffering from heavy anxiety, are advised to call an ERAN (Mental First Aid by Telephone) call center at 1201, NATAL (Israel Trauma Center for Victims of Terror and War) at 1-800-363-363, or the Health Ministry’s national call center at *5400.
The AACI’s Shira Pransky Project has a valuable site with a short video and easy-to-read instructions for intellectually challenged people:
 http://shirapranskyproject.org/emergency_instructions_intellectual_disabilities.
The same site has room for readers to ask questions, which are promptly answered.