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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.

Thoughts on Working with Children – Dana Berezowsky May 27, 2010

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Dan said in school yesterday that Ami’s legs disgust him. Why? “Because they are crooked.” Ella’s response: “So you’re perfect, are you?” My response: “Deal with it.”

Now, writing about it at home, another question arises: what does it bring up for Dan, or any other child, to see a person with a physical difference? Perhaps fear? The fear that it could happen to me too? Disability is frightening at the most personal level – what if it happens to me? What if I have a child like this? Noam, who works with the survivors of wars and road accidents, sees it all the time – this coming to terms with what is lost.

I remember a man I once saw with three other children on the bus. Through the window we could see that he walked a little funny. It’s true. But if we tell him – he will be hurt. If we laugh at him from a distance – it will be insensitive. He really does have a funny walk. I try to think what I would tell my own children.

I have a problem with preaching morals. “We don’t say things like that,” “It’s not nice” – this kind of speech represses the problem but does not make it disappear. Then I thought to say – “I wonder whether he’s a nice person.”

Perhaps this is what takes us beyond our superficial judgments: of what is beautiful, ugly, disabled. The question “Who is this person?” To see him as a person. Even if I have no intention of actually getting to know him, my perspective on him might change.

And to Dan? “So what if Ami has crooked legs?” There is no point trying to blur the facts. But we can point out different aspects of them. And certainly we can point out to Dan that saying it in Ami’s hearing is very insulting…

Dan told me the answer: “It disgusts me”. That is a strong statement. Does it frighten him? Can disgust hide some other feeling? All the same, is it not worth trying to understand the source of his disgust? Does Dan’s statement really come from some inner feeling, or is he looking for a way to provoke a response? Also a question.

As an educator I have two options: to cancel out Dan’s statement in a few words; “Deal with it”; “So you’re perfect, are you?” Or else to enter into the depths of the issue. This in itself removes the sting from the provocation: he wanted to annoy, and got a lecture.

The correct response must depend on the time and place, and we are bound to get it wrong many times. In the end, intuition and experience are the best tools we have.

Dana Berezowsky is an occupational therapist working at the Ilonot School, Jerusalem, and in a ‘training apartment‘ for teenagers with Cerebral Palsy. Translation: Jessica Sacks.

If you call this ‘Normal’… – Jessica Sacks May 13, 2010

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I am ‘healthy’. That is, I have not been diagnosed with any disability, I have full use of my limbs and senses, and I am able to live an active life in society. Sometimes a little too active for my liking. But otherwise, I am ‘healthy’, and ‘normal’.

I have always been a little involved, through my friend Cissie, with a different kind of normal. Together we used to go to summer-schools for children with disabilities; summer camps where the activities were accessible to people who used wheelchairs or who could not see or hear or think problems through in the same way I can. The camp counselors, though I did not know it at the time, included physiotherapists, occupational therapists, and special education teachers. For me it was just a summer camp like any other; moments I enjoyed, moments when I was bored, children I liked more, children I liked less.

Nowadays life is a little different. I work in an office which does not have a disabled-access toilet. This means that I will probably never have a colleague there who uses a wheelchair. Not because they could not do the job, but because they could not use the building. I live on the second floor of a building with no lift. I live in a hilly city full of steep slopes, irregular outdoor staircases and building-sites which spill across the pavement into the road. I have come to realize that I live in a world where not everybody is seen, not everybody is listened-to, not everybody can access the things, the culture, the human contact, that make my life good.

This hurts me, not because I pity these people – people can have good lives which are not the same as mine. It hurts me because of what it means about the society I live in.

Through my friendship with Cissie I have become involved with building this forum. I have begun to listen out more to the ways in which the society I live in defines who is ‘in’ and who is ‘out’. Through the Israel Disability Studies Network I am beginning to learn more about what this means and how we can make things change. For me this is one of the biggest adventures of my life: it means seeing my world in a completely new way. I am planning to keep a diary of this journey on the site, and welcome anyone who would like to join me on my way, to inform, share, comment, scream, laugh. Educate me, please…