Sunday, May 15, 2016

On prizes for caring for special children

(PBS image unrelated to the people in this article)
Last week, on Yom Ha’atzma’ut, Doron Almog, a general in the IDF, was awarded the Israel Prize for lifetime achievement. I have already reacted to that pretty heatedly here [“Israel is in love with institutions”] and here [“The Israel Prize: More about the strange choice of recipient”] and here [“Institutionalization: Why Does Israel Continue to Be Infatuated With This Cruel and Archaic Approach?”] so I won't elaborate this time.

Suffice it to say that the award was yet another nail in the coffin of inclusion of Israeli children with disabilities by buttressing our entrenched system of insitutionalization of that segment of our population.

I will, however, suggest a man who, I believe, is more worthy of that prize.

He is the subject of an article by Alon Idan, Opinion Editor at Haaretz. It appeared last weekend [“ילדה זה לא סוכריה על מקל”] in Hebrew. I translated it today and I am confident you'll agree it is hands-down one of the most moving pieces you have ever read. 

The anonymous subject of the piece demonstrates a devotion to, love for and commitment to, the inclusion of children with disabilities. In fact, compared with this year’s Israel Prize winner, it’s arguable that there really is no contest.

A child isn’t a lollipop
By Alon Idan – originally published in Haaretz (Hebrew), May 5, 2016
(Translated by Frimet Roth)

He looks at me for a moment as if he wants to say something but immediately lowers his eyes. I notice that on his left knee lies the head of an adolescent girl. I walk back to the bench I had been sitting on.

“Listen...” he is nearly stuttering now, a few seconds later, “Can you perhaps help me?” I tell him yes but don’t understand what help he needs. “I need you to help me hold her,” he answers looking in the direction of the head that is resting on his left knee.

We are outside the ultrasound rooms in a hospital with people lying on beds scattered along  the length of corridor, most of them old, wrinkled,  eyes stricken, but the head  lying on his knee is the head of a young pretty girl. I ask: “Help holding her?”

He nearly apologizes: “She is mentally retarded, she doesn’t speak at all and the last time they wouldn’t x-ray her because she got wild, and everything she eats she immediately vomits up, for a long time now, and I must have her x-rayed, must.”

He’s her father and is over the age of 50, and he’s an Ethiopian immigrant from many years ago and now sits alone on a hospital bench, and his daughter is lying on his left knee, and when he speaks about her in a mix of apology and pleading she suddenly raises her head, opens her beautiful eyes and looks at him, and afterwards at me, and says nothing.

He has an orange hat, and under it is a man who works every day in a hotel, the night shift, always the night shift, “so that I’ll be able to be with her in the mornings and afternoons until my wife returns from work.” And he returns from his shift at 2 at night and falls asleep on the sofa beside her. “I fall asleep like this”, he demonstrates. “Sitting, I fall asleep sitting. There’s not much room in the living room, and I must be beside her at night, in case she wakes up suddenly and does something.”

An orange hat and a hand that is now resting on it, while I sit beside him and don’t know what to tell him. “It’s hard”, he suddenly says, his voice cracking, “This life is hard, very hard.” I nod, helpless. “It’s not a life.... nobody comes to us, and I don’t go to anybody, and everything revolves around the child.”

I ask him whether the State helps, and he answers that “there’s no state that helps like this one, but I’m not prepared to give her away, not prepared.” And then he says a sentence that he will repeat over and over again: “A child isn’t a lollipop, you don’t give away a child like that. She’s my child. Who will care for her the way I do? I will care for her as long as I am able to, until I die. A child isn’t a lollipop.”

The door opens and shuts but nobody looks at him. He begins to fear that I might need to leave. “I’m holding you up”, he says to me “I’m holding you up.” I say that it’s OK, he shouldn’t get stressed and he relaxes a bit. “You understand,” he continues, his hand rests again on his orange hat trying to crush it into his skull, “I don’t leave the house, only to work, it’s hard like this, it isn’t a life.” And a moment before I say to him that I understand – can you really understand? – he breaks: “There are no friends, nobody, alone all the time.”

A grown man, a child lying on his knee, now sits on a hospital bench and cries.

Presently they call him. It’s time for the examination. We walk towards the door: the father, his daughter and a total stranger. “Who are you?" the nurse asks me. And the father immediately cries: “He’s with us.” Why does he have to be with you, she asks and the father says: “Because she moves a bit and he’ll help us hold her.” “Hold her?” She’s suspicious and immediately determines: If it’s “a case like that” then the ultrasound can’t be done.

The father is stressed. He says everything will be alright, that his daughter must be checked,  just as a large-bodied janitor approaches us: “Come, come a minute,”  the father asks and the janitor doesn’t understand. “I need you to help us too,” he says, and the nurse looks on in disbelief. Suddenly, without asking, the father raises his daughter – long, thin and frightened like a baby – and simply lays her down on the examination bed. Before the nurse has a chance to object, he says: “You’ll hold her legs, and you’ll hold this hand and I’ll hold her like this.” The nurse is about to say something, apparently to object, but she never finishes the sentence she begins to formulate.

Lying on the bed in a darkened room, three men gripping her body, a strange device, perhaps painful, threatens to touch her – the child trembles from fear and begins to go wild. “Don’t be afraid, my darling” the father cries and caresses her face, “don’t be afraid, everything will be OK.” Now the janitor, his face large, a yarmulke on his head, his eyes moist, says to her: “Don’t be afraid, don’t be afraid.” I too join the plea, as her right hand struggles forcefully to escape my grip.

But the girl is still going wild and the nurse is still hesitant, and now the father strokes his daughter’s face again, repeating the words: “Don’t be afraid, darling, don’t be afraid.”

He stands directly above her, his head above hers, so frightened that the nurse won’t perform the examination. “Don’t be afraid, darling,” he continues; now it is truly a prayer. “Don’t be afraid darling”. But she continues to move, to go wild, to resist, when suddenly I notice tears trickling onto her face. The father is sobbing on his little girl. Sobbing onto her and begging: “Don’t move, please, don’t move, let her check you, you must be checked, please.” 

And the nurse, who can no longer avoid the sadness and the power and the beauty of life that coalesce in the tear drops flowing from the pure heart of the father to the frightened face of his daughter, immediately smears the gel on the girl’s stomach and places the scanner on her.

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