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Love, Davka – Jessica Sacks October 27, 2011

Posted by jewishdisabilityunite in If you call this 'Normal'..., Society.
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When people meet me for the first time they always give me tips on how to drink my tea. One woman promised me that if I drink green tea with turmeric, I’ll get my  voice back just like that. They don’t understand that I’m always like this. That this is how I talk. That this is the only voice I have. And together with it I have become the person I am. Because in order to hear me you have to do more than hear. You have to listen.

When I was fifteen […] a car hit me at high speed and wounded me severely. My spine was injured, and I spent a turbulent adolescence in hospital. I can’t quite understand why it is that since the accident, I haven’t been in a relationship. Yes, I’ve had brief affairs with men, but the longest relationship I’ve managed to have so far is with Mina, my Korean caregiver.

I have never seen the Jerusalem Center for Independent Living so packed to overflowing as it was for the opening of the current season of Disability
Studies events. The occasion was a double film-screening, followed by a discussion with the directors of both movies. Sivan Ben-Ari and Lior Amichai
presented No Friend of Mine, and Rona Soffer, her award-winning Love Davka, quoted above. The subject of both films – enormously different as
they are from each other – is that unanswerable question-to-answer-all-questions – love. And wow, had the choice of movies struck a chord.

Why (oh why – was the question in the air) is it so hard for people with disabilities to find partners? It may be hard to walk, hard to talk, hard to
work, but why should it then also be so hard to give that simplest and most needed of things – love – when that capacity above all others is unimpaired, and so desperately eager to be expressed?

The two movies, as it happens, come at the question from opposite angles. In Love Davka, Rona Soffer sets out on a valiant, but poignantly unresolved quest
for that elusive missing element that could bring her the love she dreams of. In No Friend of Mine on the other hand, the able-bodied Sivan Ben-Ari reconnects with her high-school heroine Lior after Lior, like Rona, has become severely disabled. As Sivan falls again under Lior’s spell, bringing the audience with her, the question that forms itself is how – even now when each day-to-day activity is a feat of effort and perseverance – Lior is never without a man in
the background, while Sivan tramps home alone.

Lior’s magic works offscreen as well. The first audience question of the discussion was more of an appeal: “People don’t see me – they look straight through me – they treat me as if I weren’t a human being at all!” And Lior fielded it without hesitation – “It’s them who are screwed up; you’re great,
you’re cool, don’t let them get you down!” Lior herself is unquellable, her vivacity infectious. And yet the question with no question-mark remained.

And I wanted to go up to the questioner and say – “Yes, they are wrong; yes, you are cool – but understand them. They cannot read your body language; they cannot read your expression. They see your wheelchair before they see you; they hear the slur in your speech before they hear what you are saying, and they do not know – genuinely they do not know – where your experience of the world is the same as theirs and where it is different. They do not know how you see them. They do not know how much you understand or what they can understand of you. You have to tell them.” But of course I did not. Because I know it is not that easy. Someone really has to be listening.

One of Rona’s friends, responding to her question in the film, denies that it is a meaningful question at all. “Is there anyone in the world with or without
a relationship that you can explain? […] Why does [anyone] have a relationship?” And she is right – and yet… And I, able-bodied and healthy,
am as mystified as Rona. And yet once again – it is not the same thing.

A midrash comes to mind:

Rabbi Yehuda bar Simon opened: “God brings those who are lonely back home.”
Matrona, a Roman noblewoman, asked Rabbi Yossei bar Chalafta a question; she said, “How many days did it take the Holy One to create His world?” He answered, “Six!” […] “Well then,” she said, “What has he been doing from that day until now?”
Rabbi Yossei replied, “The Holy One is sitting and matching up pairs – each man with his child, each man with his wife, each man with his wealth. […] I tell
you, to you this seems like a trivial thing, but before the Holy One it is as hard as the splitting of the Sea.”
(Genesis Rabba 68:4)

The Rabbis like to bring in outsiders to ask their difficult questions for them; here a Roman woman asks an unsettling question about God. If the Creator made His world complete, including the laws and cycles of nature, all running their own sweet ways, what role is left to Him now? Some things are fixed in the
nature of our circumstances; others are in the hands of our free-will. But there are things which are neither fated nor chosen, Rabbi Yossei reminds her –
and that where God resides. Making matches. Each one with his love, his child, his fortune. And so God is in the meetings, impossible as they are, impossible
as the splitting of the Sea, which cannot be crossed until one is brave enough to walk right out into turbulent floods of it – and then, by some miracle,
perhaps it may.

The midrash continues –

There are some who go to their partners, and some whose partners come to them.

Isaac just looked up one evening and saw his bride coming over the horizon towards him; but others, like Jacob, must journey far out of their comfort zones, open many wells, labour many years and slay many dragons before reaching their partners. Until they can find the one who can learn to understand and be understood; who is able to listen and hear, to be listened to and heard. Why should he have to do all that when someone else is blissfully wed on a wave of naiveté at twenty? Nobody knows.

I don’t, at any rate. But I do recommend the films. If only to remind oneself that if at certain moments one feels alone – one is not alone.

For details of further events at the Center for Independent living, contact Tzlila: ciljr@012.net.il.
The film
Love Davka is available in full, with English subtitles, on Youtube.

Don’t Dwarf Me – Nili Broyer October 1, 2011

Posted by jewishdisabilityunite in Society.
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In December 2007, the Haifa regional court, headed by Judge Bilha Gilaur, charged the State to pay a short young man 750,000 NIS in compensation for ‘wrongful birth’. Allow me to risk summing this up in layman’s terms: ‘It’s a pity you were born.’ As a little person myself, I heartily object to this patronistic approach. The crime is not the birth of a little person, but the fact that society views his life as a tragic mistake.

Numerous reports have shown that Israeli society is trigger-happy wherever selective abortions of embryos identified as ‘flawed’ are concerned. The state invests considerable sums in pre-natal tests. And from a legal point of view the detection of a flaw – any flaw – is enough to allow the Committee on Terminations to permit an abortion.

The case in brief: In the 21st week of the pregnancy concerned, the fetus was identified in an ultra-sound test as having short arms and legs in relation to his body. After the Committee on Terminations had given license for the abortion, the hospital decided to refer the case for further testing, because of the advanced stage of the pregnancy. In the end, the hospital refused the abortion application and the pregnancy continued to term. The legal charge was brought by the parents on behalf of the 14 year-old boy, who, in accordance with protocol, was not present in court at any time during the proceedings.

As a little person, and as an activist striving to create legitimacy for difference in Israeli society, this case touches my most sensitive nerves. From my point of view, the court’s decision to compensate a short person for a hospital’s refusal to permit his abortion, is not only absurd, but insulting. I feel a personal need and a social obligation to negate each separate claim:

“Life with  a defect is worse than death”: This is a highly problematic and dangerous attitude, which was qualified in the last ruling given in such a case (1986) as applying only to rare cases in which the defect is exceptionally severe, and it can be determined that it would be better for the claimant had he never been born. It would be difficult to claim, in the case of dwarfism, that this is an extreme case justifying euthanasia, and, indeed, the judge did not take such an attitude towards the young man in question.

“Life with a defect is worse than life without a defect”: Here the comparison is between life with a given condition and life without it. The damage varies according to the severity of the defect, and even minor defects may be enough to qualify the claimant for compensation. The aim of the compensation here is to enable the person to live with his defect, and for this purpose it is necessary to assess how much damage has been inflicted on him. As, in this case, the claimant is an adolescent, it is possible only to speculate how tall he will be when he has finished growing. On the basis of expert opinion, the judge rules that he is predicted to reach a height of around 1.50 meters. Aside from the question of his height, the young man was examined for medical disability. Based on expert consultation and testimony, the court noted that the claimant does not suffer from dysfunction, is not under medical surveillance, and is as able as any other person his age. He participates in trampolining classes, plays football and guitar, and cycles.

 “Distress caused by social reactions to dwarfism”: When we decide not to view this man’s condition as a disability, we move from assessing dwarfism in a medical context, and instead see it in an aesthetic-social context. It was stressed in the protocol that “the claimant wishes to compensate the young man for the pain and suffering to which his short stature expose him. He claims that the boy’s anguish and frustration are acute, ‘and he will be forced to cope daily with the looks and reactions of other people to his different shape.’” As a result of this discriminatory and stigmatic attitude, which does indeed exist, and which many of us must cope with, the prosecution claim mentions the likelihood that, when he grows up, the young man is likely to face difficulties in finding work and in building a relationship.

The judge responded “If a little person qualifies for compensation on the basis of his appearance, then why should we not compensate ugly people also?” The judge recognizes society’s different attitude to people with disabilities, and the social damage involved, but rejects this claim as a basis for compensation. I would add to this: let society not salve its conscience by compensating those people within it that it oppresses and excludes – what is needed is a real change in itself.

“Negligence in decision making”: Since, from the twenty-fourth week onwards a fetus can live outside the womb, such that killing it raises more serious ethical questions, the hospital chose to refer the application for an additional hearing. Professor Caspi, the director of the hospital’s obstetrics and gynecology department, decided independently, without calling together the committee, and without meeting with the parents and hearing their view, to rule against the parents’ application for an abortion. The judge saw the decision to continue the pregnancy as a reasonable one, but ruled that “a reasonable decision does not justify a flawed and substandard decision-making process.”

In tort law, it is not sufficient to show that a decision was taken in a negligent way, but also necessary to prove that this caused damage.

In order, then, to compensate the young man for criminal negligence, it is necessary to show that his birth as a child with dwarfism is the damage he has suffered. Identifying dwarfism as the essence of the damage done is a dangerous and harmful claim, casting a negative light on the life of every person whose body is different from the accepted standard. The court, which is charged with protecting justice and ethics in society, is absolutely unjustified in creating and perpetuating prejudices such as this.

The Israeli court, then, ruled that the State compensate the young man to the tune of 750, 000NIS, as global damages for his birth as a little person. It is clear that this compensation is not for medical disability, this claim having been negated, and, as the judge ruled, it is also not for society’s attitudes to people with physical differences. The question remains, then, on what basis the judge ruled for this compensation. Is it possible that height stands alone here, outside any context, medical or social? No other reasoning is attached to the judge’s decision, leaving one to infer that it was based on an attitude that dwarfism is a personal tragedy that must be compensated for.

As this judgment comes by way of precedent, it is clear that the decision is likely to encourage hospitals and doctors to adopt a stronger policy in favour of permitting abortions on the basis of defects detected in the fetus. Professionals’ fear that they may find themselves in court for refusal to allow an abortion, even in cases of “minor defects,” may amplify an attitude that already dominates in Israel, and increase the tendency towards selective abortion. Far beyond the mistaken decision, in my eyes, on the part of parents, then, is the injustice caused by the court’s decision. The fact that this ruling enables archaic and anti-social thinking to be perpetuated into the twenty-first century in the State of Israel is truly shameful.

Nili Broyer directs the Center for Disability Studies Research at Alin Beit Noam. The original article was published in Hebrew on Y-net, 27/06/2008. Translation: Jessica Sacks.