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| (PBS image unrelated to the people in this article) |
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
(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.
