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Love, Davka – Jessica Sacks October 27, 2011

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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

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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.

Volunteering experiences – Chasiya Freilich September 20, 2011

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Volunteering is an approach that is used by people who are disabled or the general public as a whole.
It can be used as a tool to get oneself known in a certain field or it can be used as a method of keeping oneself active.
I personally use it as method of keeping me active. I do it twice a week once in a museum and the other time in an office . I found it very satisfiying  and rewarding I found one via a scheme that was run by Mencap and the other via the Jewish Volunteering Network.
I truly recommend it as it can be enriching and beneficial. I enjoy what I am doing at both places. I  am writing articles for a newsletter in one place and indexing memrobilia artefacts in another.
If you want to know more about JVN please go to their website www.jvn.org.uk. They are really great as they try to find work that is suited for you.

On the Amazing Power of the Brain – Jessica Sacks January 6, 2011

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I just saw this article by Oliver Sacks (no relation – but almost. My family took their name from his father’s; he was their family doctor, who used to diagnose malingering teenagers with GMG – Gornicht Mit Gornicht).

It puts a fascinating slant on the relationship between a person and the disability she may “acquire” during her life.

“Take a Seat”: Video Art by Nili Broyer and Ita Tal-Or October 21, 2010

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This thought-provoking video piece suggests that we view society as a game with rules fixed to the advantage of some and the disadvantage of others. Eitan Frier Dror interviewed Nili Broyer:

Where did the idea for this clip come from?
Around four years ago my sister asked if she could make a short film about me as part of her studies, and I refused. In films of this sort, the person with disabilities is always presented as a hero who has succeeded in spite of his problems, or else as an object of pity; this did not suit me. I suggested that she made a satirical film – a film that would touch on the subject of disability, but that would make a social statement; a film that could put a mirror up in front of society, and not specifically in front of me the individual. I had the idea of using the children’s game of musical chairs as the basis for the film.

You don’t like definitions and categorisations of different disabilities, and yet in the film you use them quite openly.
We used labelled people very openly in this film. We used terms that are common in society – ‘retarded’, ‘disabled’, ‘deaf’, ‘dwarf’, ‘blind’ – because I believe that we have to grapple with the most jarring and painful places. There is absolutely no shame in being a dwarf or a disabled person, and if we avoid using these words we communicate that they are shameful.

Why musical chairs?
The idea of the chair comes up where disability is being discussed. From my perspective the chair can be an object for people with disabilities even when it does not have wheels. For me a chair in a place is a relief; it carries the blessing of a break and a rest. Wherever I go I check whether there is a chair. And chairs have another meaning as well; the idea of taking a place in society, in life. ‘He’s sitting well’. Musical chairs is a game that every child plays in Israel; there is something innocent about it, but also something very violent.

For you then a chair is much more than a piece of furniture. You have an ambivalent relationship to chairs.
Yes. Chairs have an element of oppressing the body, of regulating us – ‘Don’t move’. For instance, there is a gender difference in the ways men and women are expected to carry their bodies. I believe there is a basic social expectation – we see it well in schools – that one must know how to sit in a chair in a particular way, must know how to control one’s body. People with disabilities fall down there – between the chairs.

The Film’s Opening Captions in English:
A retarded man / A healthy woman / A blind man / A dwarf / A disabled man in a wheelchair / Compete for their place / In a game not designed for them / The rules of the game can invalidate them or bring about their success / “Take a seat”

The original interview appears on the website of Beit Avi-Chai.

Home Again – Jessica Sacks October 12, 2010

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I’m just back from three weeks back in England, hence the long silence on the site. Every journey from my current home in Israel, to my past home, my other home, where my parents are, requires at least a couple of weeks’ preparation for me, and when I’m there, everything is different. It’s like going back in time. It makes me admire the heroism of anyone who is unable to make the physical break for independence that I have made, and who manages to carve a life and identity for herself while still living ‘at home’.

It occurred to me that when I fly to England I say ‘I’m going home’, and when I return to Jerusalem I say the same thing. The word ‘home’ has two translations into Hebrew: ‘bayit’, as in ‘this is my home’; or ‘habayta’ as in ‘I am going home; I am going to-home’. Perhaps many of us don’t really have a home; only a ‘to-home’. But a ‘to-home’ is still much better than nothing. We have an idea in our mind of that place where ‘normal’ is exactly what we are. Where we can sit down, and whatever we have or haven’t done – we are ok. Just ok. We can picture in our minds what that would be like. And then we can think how to build it.

Anyway – now I’ve come ‘home’, back to Jerusalem, and my friends here, and my work, and the cat. And back to the site! It was exciting to come back and find that people have been coming into the site while we’ve been away, and hopefully finding things they’ve been looking for here. Now Chasiya and I will be looking out for interesting writing on Judaism and disability, translating materials from Hebrew and seeking out the most useful, fascinating and unusual links we can find online. If you have anything to say or add or suggest – please write to us! As always – info@googlemail.com . Wishing you all a Good and Sweet New Year!

‘Along an open road’: Torah perspectives on dis/abled relations in the Jewish community – Jessica Sacks August 12, 2010

Posted by jewishdisabilityunite in If you call this 'Normal'..., Jewish Law, Jewish Thought, Society.
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Watch Me bring them from a northern land,    I have gathered them in from the ends of  the earth. Blind and limping men, pregnant women, all together, birthing mothers, a great flock of people will come back here; in tears they will come, and in mercy will I lead them, to rivers of water, along an open road, on which they will not stumble. (Yirmiya 31:7-8)

*

The question I would like to discuss in this article is how we are to move forward, as a community, in the relations between two groups within ourselves. This time not men and women, not religious and secular, not Orthodox and Progressive, but two extremely fluid and arbitrary groupings; ‘people with disabilities’ (physical, cognitive, sensory, intellectual or psychological) – and everybody else. This way of grouping people is ridiculously naïve, even offensively so. There is no reason, for instance, for a young partially sighted woman to identify herself with an elderly man with severe learning difficulties, more than she identifies with the fully sighted, same aged friend sitting next to her in the synagogue. The categorization ‘people with disabilities’, then, comes from the perspective of a self-defined person ‘without disabilities’ – itself a very arbitrary category. There are plenty of things which I am less-able to do than others; and while I do not consider myself disabled I will almost certainly become so later in life, unless I have the misfortune to die before reaching old age. At 28, running for the bus in the morning, I have not yet fully integrated this fact into my image of myself.

Yet despite its fluidity and downright deceptiveness, the invisible fault line between ‘disabled’ and ‘fully able’ becomes deeply significant at many moments in our life as a community. People with disabilities (at different moments different people, different disabilities) are excluded from many aspects of communal worship, whether by physical barriers (inaccessible buildings, lack of provision for people with sense impairments), or by halakhic, social or psychological ones (being excluded from obligations, feeling patronised, ostracised or embarrassed, feeling alienated by the dominant worldview expressed by the able-bodied majority). ‘The community’, on the other hand, by enacting this border between itself and the ‘others’ born into it, effectively disowns and silences (again, to different extents at different moments) many of its own members, narrowing its consciousness to that of the Darwinistically selected mainstream. I misuse Darwin’s name to suggest the ‘survival of the fittest’ while avoiding the word ‘natural’; ‘disability’ is a societally defined category, and ‘nature’ could have had it any number of other ways.

My question, then, is not how to improve the lives of people with disabilities, but how to improve the internal health of the community as a whole. A community alienated from itself cannot possibly engage with the world as effectively as one which acknowledges and deals sensitively with its own shifting internal boundaries. There is no question that the two issues are bound up with one another; ‘enabling’ the community mainstream to hear the silenced voices of the people on its margins must certainly help these people to improve their lot in life and in society. But even without reference to this possibility, the mainstream itself needs these voices; it needs every voice available to it.

The question of disability in society is a subset of the question of how we deal with difference in general. ‘When a person is taken to judgment,’ says Rava, of the post-mortem proceedings of the Heavenly court, ‘they ask him, “Did you do your dealings in faithfulness? Did you fix times for the Torah? Did you have children? Did you watch for salvation? Did you seek after wisdom? Did you understand one thing from another?”’ [1] This evaluation sketches out a full, good life in a Rabbinic outlook: at the end of one’s days, one may be satisfied with this. The questions would have to be modified for a person who was not able to engage in business dealings (‘with faithfulness’); for someone unable to study Torah; for someone unable to have children. Until recently this model would have utterly excluded women; this has changed. But never will we find ourselves in a situation in which everyone will be able to answer ‘yes’ to all these questions. What are ‘we’ to do with people who are not engaged in the central projects the community lays out for its members?

I would like to discuss three different approaches to this question, which may be arranged along three different fault lines dividing those ‘with disabilities’ from those ‘without’. The first fault line is that of access; some of us are able to access the services and opportunities the community has to offer, while others are not, or are only in a limited way. The predominant response to this boundary, in our community, is charity. Another fault line, a significant one in the Orthodox world, is that of obligation. The community is more or less defined by its collective project of living out the Torah, as we understand it under the guidance of those we respect. People with a range of different impairments and disabilities are excluded, at different times, from this shared project by the halakhic categories into which their disabilities place them. This has always been a source of shame and suffering for many of the people excluded, and the community’s response to the problem has taken the form, more and less successfully, of halakhic investigation and psak. The third fault line is possibly the least considered: the boundary of experience and knowledge. A person whose body or mind functions differently from mine will experience her life, the world and society vastly differently from me; her concerns, thoughts and perceptions will overlap with mine but will not be the same. The predominant approach to this border, as to so many others, has almost always been to ignore it. I would like to suggest that a new approach is needed, and that this may be developed, perhaps counter-intuitively, using the principles of dialogue.

The boundary of access; charity

The Jewish community excels when it comes to charity. Jews with disabilities benefit from enviable services, homes, independent living facilities, special education and sheltered employment. We are even trained in the correct responses – to smile, to be friendly, to offer to help, not to stare. But charity has its dark side, and that is a side we never see until we shift from being ‘givers’ to being ‘receivers’.

It is Rabbi Yehoshua who points out, commentating on the book of Ruth, that ‘more than the man of the house does for the poor person, the poor person does for the man of the house.’ [2] In the case of Ruth this is eventually recognised: ‘Your last kindness is greater than the first’, says Boaz, the man of the house, referring to Ruth’s act of throwing herself at his feet in the middle of the night. [3] But most of us, not being in love with all the recipients of our kindness, do not make the shift of consciousness Rabbi Yehoshua suggests. The image he overturns is perhaps the most basic Rabbinic image of charity; and, as it happens, of boundaries: ‘The boundary-crossings of the Sabbath are two that are four: the man of the house inside and the poor person outside…’.[4] Our halakhic world is mapped out in terms of inside (‘master of the house’), outside (beggar); giver, receiver.

Note, then, that Rabbi Yehoshua’s imagery is spacial. The spotlight, at any given moment, is pointed at the house, which is fixed; the poor person enters stage left and leaves stage right, nobody knows to where. The drama on the stage: What will the man of the house decide to do? Will he extend a hand with bread or money in it, or will he send the beggar packing? To the beggar, in the great scheme of things, it does not make much difference. His livelihood depends upon a certain proportion of the houses he petitions coming up with the goods – he does not mind which. To the man of the house it makes all the difference in the world: he is the star of this play, with freedom of choice, and must choose whether to be cast as hero or villain. His casting in the world to come depends entirely on the repertoire of parts he builds up in this one. The man of the house effectively climbs up to heaven on the shoulders of the beggar; Rabbi Akiva says as much explicitly, if with irresistible charm.[5] Talmudic beggars had enough ironic perspective on their own dramas to be aware of Rabbi Yehoshua’s principle: ‘Merit through me,’ they would say, when marketing their destitution on the streets.[6]

This not overly kind description of ‘hessed’ is all very well, but what about ‘tsedaka’? We are all proud bearers of the rhetoric of caring for the disadvantaged as an act of ‘tsedek’, justice, as contrasted with the patronising ‘Christian charity’ practiced by everyone else who cares.[7] Certainly we have done well at integrating the principle of giving as a form of holy income tax, which is in itself a wonderful thing; something which helps us to give willingly, without begrudging the recipient the gift which was never really fully our own. Yet our understanding of the content of that justice has not kept up with our willingness to work towards it. When we see a person who has been afflicted from above, we have sufficient religious ‘hutspah’ to rebel against that heavenly judgment and work to make the suffering person all the recompense we can. But we have not yet learnt to make fine distinctions between afflictions from above and the decisions society makes about how to define and deal with them.

I will take the extreme example of the disabilities brought about by aging. The opportunity to age is one of the back-handed miracles of our generation: by maintaining life longer we have bought ourselves years of gradual physical decline and loss of independence. This is a fact of all of our lives. For anyone, aging is a stressful process. Community care for the elderly, at its best, can be respectful, creative, sensitively offered and efficiently provided. At its worst, it can be a trauma all of its own. But almost always, residential care and sheltered accommodation distance those who require them from the life of the community, leaving only a limited number of bridges marked ‘hessed’. People who in younger days hosted family, friends and passing strangers, now wait for visits from ‘volunteers’; their place within the main body of the community has been devolved to others.

Housing issues, however, are secondary to the fact that the Jewish community we live in is strikingly age-segregated. This again is linked to the fact that our lives run along a certain expected path; the shifts in our social careers correspond to the rites of passage – study, work; youth movements, dating, marriage, children – that build up that Rava-esque c.v. for the Heavenly Court; together we work, we study, we take our parts in the great Jewish mission of perpetuating the people. We find it hard to recognise continuity with others at different life-stages, or whose lives will progress along different stages from ours. And so when we invest in elder-care it is out of a sense of responsibility and kindness towards our elders, and not because we are investing in homes for our own retirement years. Not because the fragility of a disabled older person’s life is the fragility of our own lives also.

As a tradition-centred community we have it better than some. At least we have an accessible mode of positive relation to the elderly. We have the vague concept of ‘wisdom’ – some Other kind of knowledge available only to the old and to their confidants – to counter our host society’s general trend of age discrimination. This is not to say that we necessarily have more time to listen to an older person’s ‘endless complaints’ about her health (though we may have endless time to hear our peers’ troubles, with which we have greater ability and inclination to identify), or that we will not construe her attempts to defend her rights as overly pushy, cantankerous or pathetic. But our ears may be more attuned to ‘wisdom’, and we may be prepared to push our patience and generosity further in the hope of discovering it. Again, the older person must be packaged in a certain way to be palatable, and the connection between us both stands and falls on her being Other than I am.[8] This is true of our relations with people further down our own lives’ paths than us; people going not just where ‘but for the grace of God go I’, but where, with the grace of God, I fully intend to go. How much more so with people for whom the unfathomable grace of God has had other plans?

A person’s congenital differences, then, are a matter of her fate/fortune/destiny; but isolation, alienation, discrimination, lack of access, marginalization, boredom and humiliation are social constructions. For the community to delegate responsibility for those on the other side of the access line to ‘hessed’, however genuinely heroic, necessary and sensitive that hessed may often be, is like a local authority demolishing a family’s house and then offering them a holiday in Jamaica; the short-term solution, however costly and colourful, is not enough, bears little correspondence to the family’s underlying need and no responsibility for their loss, and – even if inadvertently, unconsciously – it spares the community any soul-searching by distancing the sufferer from it.

The boundary of halakhic participation; creative psak

For a religious Jew, one of the most painful forms of social exclusion is exclusion from communal religious practice; halakhic literature bears out the fact that this is not a new sentiment. Questions of whether a disabled kohen can perform the priestly blessing, whether a blind person can be called up to the Torah and whether a deaf person can be a valid witness have been discussed from the Talmud onwards and are still debated today.

Halakha stands in tension between stability and change; the job of the ‘posek’ is to negotiate between the immoveable, utterly authoritative Law and the constantly changing pressures of social reality; this is generally done either by showing that the text does not apply in this case as we would first have thought, or by asserting the authority to redefine the law in accordance with the spirit in which it was intended, which we assume was for the good of mankind as the particular rabbi understands it. This is rare and in any case only represents a position a little further along the same spectrum as the first approach. In every event, the new ruling (suited to current needs or wishes) is expected to make its peace with the original Law and with the broader system, by reference either to another equally valid source, to the precise wording or intention or the specific law, or to the perceived spirit (perhaps hiding) behind it. A qualified mediator must carry the title Rabbi.

This is not to say that other people do not influence the halakha. We influence it all the time; we are the social reality that forces the change. Rabbi Beny Lau, in his article ‘Disability and Judaism: Society’s Influence on Halakha’, describes two ways in which this has taken place in relation to disability rights. [9] Halakhic authorities, hesitantly, integrated changes in the social realities of deafness over the nineteenth century, accepting that since medical and pedagogic advances were changing the place occupied by deaf people in society, the assumptions the Sages held about them no longer matched the circumstances. Halakha could then change without actually changing: when deaf people were deemed, millennia ago, unable to marry in a halakhically valid way, the regulation was never intended to include a person whose intellectual capacities had been fully developed in specialist school for the deaf.

In other cases, however, it is not science that advances, but society: any given society. Societies advance all the time in many directions; often they even advance backwards. The case R. Lau highlights is that of the rights of priests with visible physical differences to bless the congregation with the others. He cites the parallel Talmudic cases of Rav Huna and Rabbi Yohanan who, while making no blanket change to the prohibition against this, allowed specific priests suffering from potentially problematic discharges to bless their own congregations.[10] The Rabbis explain that this was acceptable because the communities in question ‘were used to’ those particular priests, and so were not perturbed by their conditions. In other words, abnormality is something the community defines for itself. Unlike the case of deafness, the question here rests not on the priest’s physical ability to perform the obligation, but on the effect of his disability on the community’s experience of the blessing. In this case the halakha describes, but does not prescribe, where we place the boundary between ‘normal’ and disabled.

Despite the somewhat inhibitive fact that Reform are also concerned with the issue, Orthodox rabbis, here and there, have been beginning to address the remaining lacunae in halakhic literature when it comes to the rights of people with disabilities. The Bet Midrash for Social Justice, for instance, which Rabbi Lau directs at Beit Morasha, Jerusalem, has produced a small amount of research on questions such as access in the synagogue, the place of people with physical disabilities in communal worship, and the rights of people with epilepsy in divorce proceedings. This and other such work is published patchily, on a small scale. The most comprehensive book on the subject, Tzvi Marx’s Disability in Jewish Law, is broad and fascinating, applying social and psychological insight to a broad range of Rabbinic sources; this underpublicised book is relatively difficult and expensive to come by, and Marx’s aim is to deepen our understanding, rather than (although as a necessary prerequisite to) making changes in the halakha we practice. [11]

Halakha, then, meanders along its way, influenced by and sometimes putting up its necessary resistance to the pressures of ethics and expectations from the outside. People with disabilities remain on that outside. As in the charity model, there are ‘men of the house’, mostly rabbis, working with the best will in the world, to bring in outsiders as much as they feel they can. The tug-of-war mode of halakhic change-in-stability requires a fixed hierarchy of influence, a hierarchy one can climb only in so far is it is made accessible to one.

Exceptions are worth noting. Rabbi Shaul Anvari, a graduate of Yeshivat HaKibbuts HaDati at Ein Tzurim, is perhaps the first ordained Orthodox rabbi with cerebral palsy.[12] With the help of a team of other rabbis, and typing painstakingly with his feet on a computer specially adapted for him by members of Kibbuts Sdeh Eliyahu, Rabbi Anvari is compiling a book of halakhic responsa for people with disabilities. The issues he deals with belong to the everyday: how should one lay tefillin if one does not have enough motor control to bind them? When should a person who uses a catheter say the blessing after going to the toilet? Can a person with disabilities fulfill his obligation using electric Hannuka candles? This concern with the personal religious life of a Jew with disabilities carries the scent of something new: until now the focus of halakhic discourse has been on the public face of disability; on the synagogue and on the interpersonal laws of contracts and damages. Finally we may be becoming able to accept people with disabilities as full halakhic beings in their own rights.

The boundary of experience; dialogue

The border-line which is perhaps most difficult to acknowledge that divides between people with disabilities and those without, is the abyss dividing our experiences of the world. How are we to navigate our interactions truthfully and lovingly, when we cannot articulate or even really gauge the difference it makes that my concept of body-image is unlike yours, that I am struggling with different challenges and ambitions in my present day-to-day, that I may have grown up in a different education system, that you may have grown up forever ‘different’ in the same education system? It may be literally impossible for me to empathise with the everyday experience of somebody else. It may be emotionally impossible, except perhaps in moments of agonizing grace, for me to contemplate what that experience means to him, or what it implies about me, my life, my experience.

One who sees… an albino, or a giant, or a dwarf, or a person with dropsy, says ‘Blessed is He who made his creations different from one another.’ One who sees a person with missing limbs, or a blind person, or one with a flattened head, or a lame person, or one who suffers from boils or a person with a whitening skin complaint says, ‘Blessed is the true Judge.’[13]

Liturgy is one of the most powerful ways of creating ideological norms; when a person preaches a sermon he tries to persuade his audience to agree – when he tells them to say a particularly blessing, he literally puts his words into their mouths. To the extent that I am aware of what I am saying and do not consciously rebel against it I integrate the blessing’s assumptions seamlessly into my own worldview. Berakhot, then, align our reactions to particular situations and stimuli, either drawing our attention to an everyday event which could have slipped by unnoticed, or offering us an appropriate, scripted mode of reaction to something out of the ordinary.

The Talmudic discussion of these Tanaitic sources on the appropriate blessings for people with various visual ‘abnormalities’ makes a distinction between people born with the ‘whitening skin complaint’ in question, and those who contracted it later in life. Illness, accident and violence are personal calamities; the Jew who responds to the scars with the ‘justification of the judgment’ formula, ‘Blessed is… the true Judge’, is assumed to identify so powerfully with the stranger’s suffering that he needs a blessing to keep his faith intact, perhaps to console himself for his vicarious suffering, and to maintain his sense of a somehow-coherent universe. If the disability (the commentators take the distinction between ‘skin complaint’ diagnoses to apply to the other conditions as well) is congenital, then no ‘justification of the judgment’ is required; at least, not the conventional one. Being created ‘different’ is no disaster; it is the spice of life.

The dynamic of this blessing is played out in a Talmudic narrative, Taanit 19b-20a:

‘Once, when Rabbi Elazar the son of Rabbi Shimon [bar Yohai] left Migdal Gadur, his teacher’s house, he rode on his donkey, moving along the bank of the river, extremely happy, and in a strutting frame of mind, because he had learnt so much Torah.

‘He happened across an extremely ugly man. The man said, “Shalom, my teacher.” Rabbi Elazar did not answer him; instead he said, “Idiot! How ugly that man [i.e. you] is! Could it be that everyone in your city is as ugly as you?!” The man said, “I do not know; why don’t you go to the artisan who made me and say, ‘How ugly that vessel You made is..!’”

Rabbi Elazar immediately accepts the man’s point (‘na’aneti’ – literally: ‘I am answered’ – a moment before he would not deign to ‘answer’ the respectful stranger greeting him.) The power dynamic between them reverses; the rabbi apologises profusely for his rudeness, and when the offended man, understandably enough, does not accept, he follows behind him in a gesture of contrition, refusing to leave him alone until he is forgiven. This leads him as far as the very city mentioned in the rabbi’s flippant outburst:

‘The people of [the man’s] city came out to greet the rabbi and said, “Shalom my teacher, my master, my master!” The man said, “Who do you think you are calling ‘my teacher’?” They said, “That man who is coming after you!” He said, “If that is a teacher, I hope Israel does not have many like that.” They said, “Why?” and he told them what he had done to him. They said – “All the same, forgive him; he is a very learned man when it comes to Torah.” He said, “Well, for your sake I will forgive him; but only if he does not make a habit of it.”’

The image of one man walking after another is that of a student following his teacher to learn from him.[14] Both Rabbi Elazar and the ‘ugly man’ are fully aware of this reversal in their statuses, and it is only to the bystanders who still recognise the well known rabbi for what he is supposed to be. It is these ‘people of the city’, carrying the pressure of convention, who restore order in the end. When they were invoked in their absence, it was in the mind of Rabbi Elazar, who wondered, at least in somewhat contemptuous rhetoric, whether the explanation for the man’s ugliness could be the ugly city he comes from. The man ‘does not know’ whether or not he is ugly in relation to his neighbours; they, unlike the wise-man, do not draw attention to his looks. Among them, ‘for their sakes’, he can afford to be forgiving. They teach him to make allowances for teachers. More to the point, they listen to his story with enough respect for him to relax his militancy, knowing that his point has gone across. He is now the ‘teacher’, though of a different kind. And indeed:

‘Rabbi Elazar went straight into the Bet Midrash and taught, “Let a man ever be soft like a reed, and never hard like a cedar.” This is why the reed had the honour of providing pens for the writing of Torah scrolls, tefillin and mezuzot.’

How Rabbi Elazar learnt this lesson from the man, who for all his insight and presence of mind is not exactly ‘soft’, is open to interpretation. He may have learnt it in the negative from the man’s obstinacy, in the positive from his eventual capitulation under the pressure of his neighbours, or from the insight he gave him at the outset, into the diversity of beauty in God’s creation. The point may be driven home by the condition for his forgiveness, ‘only if he does not make a habit of it;’ only if he learns to replace his closed-minded, arrogant habitual response with something more sensitive to the individuals he encounters. In any case – a transformation has taken place. If the Torah the rabbi learnt a moment before the story began made him vain and narrow-minded, the Torah he has learnt from this encounter requires him to accept difference and vulnerability. From now on, all scrolls must be written that way: from a soft and humble material, responsive and delicate.

For all the rabbi’s learning, the ‘ugly man’ (in his eyes) knows something he does not know. He knows his own city and his own place in it. He knows something about creation which does not correspond to the model understood in the Bet Midrash. He knows that God’s aesthetic is broader than any human’s. He knows things born of the pain of his rejection, and things born simply of his different angle on the world. He knows that God is God because He ‘makes His creations different from one another’; he knows that the hierarchy of knowledge in which the men of the Bet Midrash self-define as the ‘teachers’ bears a very precarious correspondence to reality. The transformative knowledge Rabbi Elazar gains here comes less from the words exchanged between him and the man, than from the hardness and softening of the encounter itself. The meeting of clashing worldviews opened up to one another is perhaps what we would now call dialogue.

There are various models of dialogue. Cobb’s theory of interreligious dialogue is that the places of encounter should be the points of shared crisis; that two communities must identify their common weak points – traumas, internal divisions, crises of faith – and meet to learn from one another’s ways of coping.[15] This shared problem-solving should transform each community separately (first of all), and then the two together. To bring up such a theory of dialogue here seems highly inappropriate; here we are not discussing ‘us’ and ‘them’ but only us: us the Jews, of all abilities. But to say that it is as simple as that would be a denial of the fences, the moveable, semi-transparent fences that divide people with disabilities and the community at large along the three fault-lines we have discussed and probably along others as well.

‘The community’ encounters its members with disabilities only at moments of strength – or across the ‘mechitsa’ of charity. Only at the times and in the places which have become accessible, or when representatives of the ‘community’ go out to meet those on its outskirts, expressing their position of strength and wholeness in compassion for others. At the points of weakness, of our shared weakness, we do not meet; people are denied access, are spared the trouble of obligations (which may trouble others to help them), are alienated from the dominant worldview, or interact in partial or complete denial of their disabilities so that they can ‘fit in’ more easily. Encounter at the crisis moments – as when Rabbi Elazar finds the ‘ugly man’’s pain and humiliation and meets it with a corresponding crisis of his own understanding of the world – are rare. Fortunately. Rare also are the quieter moments of encounter with the divide; moments when we realize our shared vulnerability, allow ourselves really to see the vulnerability, isolation, suffering and frustration of others, and acknowledge the weaknesses and gaps in our own experience of the world, which require the silenced knowledge of others to help fill them.

What we need may be dialogue, not in the sense of a staged showdown, but in the sense of constant, everyday presence together, listening, speaking, learning together, working together on our shared limitations. Presence needs to be worked on, it must be enabled and invited. But it is not the end in itself; it is what we all need to reach a shared end, a fuller self-awareness, a healthier shared process, moving wherever we need to be going together, and cannot yet predict.

Redemption

Yirmiya, quoted at the top of this article, draws an image of redemption where all of the scattered nation is brought back together to its land and its ritual life; ‘blind and limping men,  pregnant women, all together, birthing mothers’. The phrasing suggests a gentle homecoming; a redemption accessible to all ‘together’ – so Radak: ‘…I shall bring them easily, along an open road, such that even the blind and limping and pregnant and birthing will be able to walk with them and will not stumble as they walk.’ Yet Rashi brings a different nuance to bear: ‘Blind and limping: Even the stumbling people among them I shall not reject (lo em’as).’ Where does Rashi find the ‘hava amina’ that these people might be rejected? Does he include the pregnant and birthing in this expectation? Yet the assumption is not absurd in the slightest. The eventual Zionist resettlement of the land was fueled by an ideology which had little space at all for people unable fully to participate in the physical labour of the enterprise.[16]

This vision of redemption is helpful in drawing our attention to what we are lacking in the present state of things, and to the way things work, ‘really’. Without a little divine mercy, none of us will be getting anywhere. And divine mercy is a thing to be shared, not to be swallowed up first by the ‘fittest’. But we do not need to wait for Redemption to work towards shifting the balance. We have always known, at least in the basics, how it is done:

‘A person who witnesses the new moon and is unable to walk, [others] must bring him [to Jerusalem, to testify] on a donkey – even carry him on a bed. If the witnesses are anxious, they bring sticks; if the way is long, they take food in their hands, for with a walk of a night and a day one breaks Shabbat and goes out to testify to the new moon, as is said, These are the gatherings of the Lord… which you must call at their times.[17]

I have translated the opening of this mishna with an awkward wording that reflects the Hebrew grammar; ‘a person who witnesses… [others] must bring him…’ Both the disabled witness and the undefined others who may be any able-bodied Jews, are the subjects of this law; the object is the moon itself. We are all responsible for this man’s testimony being heard, not out of responsibility towards him, but because his own declaration, spoken by his own mouth, is needed in order to fix the community’s calendar. We will break Shabbat to make sure that this happens. We will carry his bed a night and a day’s distance. No second-hand telling will do; we will not rely on the probability that somebody else will have seen the same thing. He must make sure that he is heard, and we must all make sure to enable him. This is how holy gatherings are made.

The article first appeared in Degel (Nissan 5770) – posted with kind permission of Benjamin Elton.


[1] Shabbat 31a.

[2] Midrash Rabbah Rut 5:9.

[3] Ruth 3:10.

[4] Shabbat 1:1

[5] Bava Batra 10a: ‘Turnusrufus asked Rabbi Yehoshua, “If your God loves poor people, why does he not sustain them?” Rabbi Akiva replied, “So that we may be saved by them from the judgment of Hell.”’ (The story carries on to define Israel as ‘Sons of the Lord’ only in so far as we obey the moral imperative of caring for the needy.

[6] Eg. Yerushalmi Ta’anit 1:4.

[7] Islam has a concept of charity ‘tax’ very similar to ours, and uses the same Semitic root in the term ‘sadaqat’ used for spontaneous giving (understood in the sense of ‘sincerity, truth’). And of course, we should hesitate before criticizing Christian philanthropy and activism; we owe countless breakthroughs in human rights and social justice, as well as almsgiving, to  religiously motivated Christians.

[8] This subject is developed by Barbara MacDonald and Cynthia Rich in Look Me in the Eye: Old Women, Aging and Ageism, (Midway, 2001).

[9] First published in Hebrew, BeMa’aglei Tsedek 11, (Jerusalem, 2005).

[10] Megilla 24b.

[11] London, 2002.

[12] Some of R. Anvari’s work is available in Hebrew at shaul-anvari.info; translations may be found at jewishdisabilityunite.wordpress.com, where Rabbi Anvari also provides an ‘ask the Rabbi’ service.

[13] Berakhot 58b.

[14] Cf, for instance, Hagiga 15a, ‘Once, “Aher” was riding his horse on Shabbat, and Rabbi Meir walked after him to hear Torah from his mouth.’

[15] J. B. Cobb, Beyond Dialogue: Towards a Mutual Transformation of Buddhism and Christianity, (Minneapolis, 1982).

[16] The negative impact of Zionist ideology on the rights of disabled groups in Israel is discussed by Dr. Dina Feldman in ‘The Equal Rights for Persons with Disabilities Law, 5758-1998, at the Crossroads between Charity and Right’, available in Hebrew Bema’aglei Tsedek 11 (Jerusalem, 2005).

[17] Lev. 23:4; Rosh Hashana 1:9.

Fate, Destiny and Disability – Ariel Goldberg August 2, 2010

Posted by jewishdisabilityunite in Jewish Thought.
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Disability is a fate. Fate is a word with two common meanings: “the development of events outside of a person’s control, regarded as predetermined” or “the course or inevitable outcome of a person’s life.” Until a generation ago, disability was understood as a fate in both senses of the term. Today, it more widely understood that although the development of a disability is outside of a person’s control, it is not inevitable that it will determine the course, or outcome, of his or her life.

This distinction is one that is very real to me. At the age of sixteen, with no warning, I developed major idiopathic (undiagnosable) chronic fatigue. Five years and countless medical interventions later, with recovery nowhere in sight, I began to despair of ever regaining control of my life. It was then that I began to look for solutions outside of medicine and integrate my religious life into my process of healing. I adopted practices of mindfulness, including Jewish meditation and yoga. To make sense of my situation intellectually I began exploring Torah classics including modern Jewish theology. The more I explored, the clearer it became to me that while I might be fated to live as a person with a disabling medical condition there was no reason why I had to  live as a ‘disabled person’ whose life would be permanently defined by his condition.

One of my greatest discoveries was Rabbi Joseph Dov Soloveitchik’s essay Kol Dodei Dofek (The voice of my beloved is knocking). It taught me that although I cannot control what happens to me, I can choose my reaction, which happens through me. In this way, I initiate my destiny – the other force shaping my life.

Fate and destiny, according to Rabbi Soloveitchik, exist in dialectic, as if the two concepts are in conversation with one another.  He summarizes fate with the slogan “against your will you are born and against your will you shall die.”  The slogan of destiny, on the other hand is “by your freewill you shall live.” “Man is born as an object and dies as an object,” he continues, “but he lives as a subject.”

We are all born as objects of fate. We enter the world affected by objective limitations, including our genetics, familial circumstance, economic status, historical and geopolitical situation, and, for some of us, disability.  When we die, we are affected largely by conditions beyond our control. In between, we live as subjects with freewill.

A dictionary definition of “subject” is “dependent or conditional upon.” A human subject, in Rabbi Soloveitchik’s view, lives a life that is conditional on the exercise of his or her freewill. She may be fated to experience real limitations, whether from a disability or something else, but the ultimate definition of her life is conditional on her exercise of her freewill. She is the shaper of her own destiny through the relationships she has with G-d and people, her creative and professional life, or the attitudes she takes.

Kol Dodei Dofek was written in 1955 as a theological response to the Shoah and the creation of the State of Israel. Its title is taken from one of the most poignant verses of the Song of Songs: “I sleep but my mind is awake. Listen! My beloved is knocking (Kol Dodei Dofek). Open for me, my sister, my beloved, my dove, my perfect one . . . ” Midrashic interpretation of the Song of Songs understands it as an erotic poem about two lovers and, at the same time, as a metaphor for the relationship between G-d and his beloved Jewish people. For Rabbi Soloveitchik, it is also indicative of the existential situation that confronts the Jewish people and individual human beings alike.

Fate, in Rabbi Soloveitchik’s terms, is a knocking, meant to awaken us from our slumber, challenging us to take up “man’s mission in this world”; namely, to turn fate into destiny, from an existence that is passive and influenced to one that is active and influential. It is about moving from “an existence full of compulsion, perplexity and speechlessness into an existence full of will and initiative.” This, according to Rabbi Soloveitchik, is the challenge posed by the Shoah and the birth of the state of Israel. These events call out to the Jewish people to move from being a passive people who let history happen to them to playing an active part in their history’s unfolding.

When fate knocks, our first question is often “why?” Without denying the value of seeking after an answer, Rabbi Soloveitchik stresses that it is a speculative question, for which there can be no satisfactory answer.  For him, the most meaningful response is not to question fate with a “why?” but to ask “what can I do now?”   Rather than question why the Shoa happened, for example, the Jewish people should ask what it can do now to rebuild Jewish life, especially in the context of the State of Israel.

My friends and relatives who have intellectual or physical disabilities have taught me powerful lessons about what it means to be the shaper of my destiny.  Mostly. they have done so their personal examples (which our sages teach is the most powerful way of communicating). These lessons were especially meaningful  for me while I was in the acute phase of my illness. They continue to resonate for me even now when I have largely regained my well-being.

One of the most poignant of these learning experiences unfolded on Simhat Torah two years ago. On that day, a man whom I will call Jonathan Kraus, was honoured with the Hattan Bereshit (the first  aliyah of the new reading cycle, where the first section of the book of Genesis is chanted). This was no ordinary aliyah and Jonathan was no ordinary oleh.

Jonathan has a condition similar to A.L.S. (Lou Ghreig’s disease). He is totally paralyzed and can communicate only by blinking his eyes.  Prior to his illness, Jonathan was an admired figure in the Canadian Jewish community.  He is one of those precious Jews whose life embraces traditional Judaism and, at the same time, the world at large.  Combining outstanding Torah learning with an excellent knowledge of the humanities, dedication to the Jewish people with service to the general community, analytic brilliance, and mentschlichkeit, Jonathan seemed to have it all. Then, without warning, he contracted his illness and, in under a year become completely incapacitated.

By the time he celebrated Simhat Torah in 2008, Jonathan had lost ninety percent of his muscular function. Unable to speak for more then a few seconds or move, except slightly, he avoided doing much of either in public because the effort required was too difficult. When he was wheeled to the bimah for his aliyah, the Torah reader whispered to Jonathan that he need not recite the blessing out loud to fulfil his Halachic obligation as reading it silently was enough. Hearing this, Jonathan gave a slight wave of his hand, as if to say “don’t worry about me.”

He began reciting the Bracha.  A blessing that is usually done in ten seconds took Jonathan over a minute. His words were garbled, almost unrecognizable. But this was one of the most meaningful prayers I have ever heard.

Getting the words out required Jonathan’s total concentration. With his eyes closed, fists clenched, and sweat dripping from his forehead, he willed his way through each syllable of the blessing. The Shema tells us ‘you shall love H-Shem your G-d with all your heart, with all your soul and with all your energy’. Watching Jonathan, I  truly understood what that meant.

His Bracha was Jonathan’s way of affirming publically that no matter what happened to him externally, he would be the master of his destiny. When the Aliyah was over, The Sefer Torah was placed on his lap and then, with his power wheelchair, he lead the procession around the synagogue, beaming at everyone he passed. Jonathan may have been almost completely paralysed but I have never seen anyone so strong.

Living a life that is a response to the question “what can I do?” is, I believe, dependent on having a strong sense of meaning. Viktor Frankl, a pioneering psychotherapist who survived the Holocaust, argued that there are three approaches to discovering meaning: 1) By “creating a work or doing a deed” 2) “By experiencing someone or encountering someone” 3) “By the attitude we take toward unavoidable suffering”.  Quoting the philosopher Fredrich Nietzche, Frankl concludes that ‘he who has a why to live can endure almost any how.”

In reflecting on Frankl’s ideas I recalled another verse from the Song of Songs.  After the lover hears her beloved knocking, she reports “I arose to open for my beloved.” Rashi comments that this “opening” is done “wholeheartedly and with a desiring soul.” If we extend Rabbi Soloveitchik’s metaphor of the knocking of the beloved as being G-d visiting  us with fate, I think we can understand this verse as offering us a metaphor for responding to our fate with total openness.

In the Kaballah, emunah, (faith,) the highest state of consciousness, involves complete openness to whatever G-d may bring into one’s life. When fate knocks, perhaps in the form of a disability, a person with emunah will embrace the new situation and open themselves to all of its possibilities for meaning.

In her own way, my aunt Pnina has modelled this kind of openness. A quadriplegic  (paralysed from the neck down), due to multiple sclerosis, she has for a decade been  unable to eat, move or perform bodily function without assistance from others.  At the same time, Pnina has embraced the experience of having a disability wholeheartedly and out of it created a meaningful life.

A people person with a gift for organizing, Pnina has become an important disability rights advocate, empowering people with disabilities and those without to think more inclusively.  By choosing to embrace the possibilities for meaning offered by her disability, my aunt has been able to transcend much of the pain that is also present. Her life demonstrates Viktor Frankl’s equation, S = P – M.  Suffering is the presence of pain in the absence of meaning. (Alternatively, pain could be substituted with the words “limitation” or “disability”). Everyday, Pnina awakens in the morning and faces her frustrating limitations anew. But because she has meaningful work to do, these pains are not the be-all of her existence. Enduring them is a means to a greater end.

Living or not living with physical or intellectual limitations is not an either / or. We are all fated to experiences limitations of one sort or another, especially death. The question is not one of “if” but “how” and “when”. People with disabilities can teach the rest of society about this reality. Their examples can challenge others to respond meaningfully when fate knocks.

People who are not disabled and do not encounter the naked reality of their limitations on a daily basis often have the option of making the same mistake as the narrator in the Song of Songs. They can delay arising when they hear the knock until it is too late. (When the lover opens the door she discovers that   “My beloved had hidden and was gone . . .  I sought him but found him not. I called to him, but he did not answer me.”)  When they experience temporary setbacks which highlight their limitations these people can let the experiences pass by without reflecting on how these aspects of their fate can be transformed into a meaningful destiny. An existence that is lived in partial denial of reality is not, to my mind, one that fully embraces the blessing of life. A lack of awareness of one’s limitations is itself a powerful limitation reducing a person’s capacity for a destiny which includes real joy, love, faith and creativity.

People with disabilities are often recipients of help from those without disabilities in meeting their physical or intellectual needs.  But the reverse is also true, I believe.  People with disabilities have much to offer people without them when it comes to meeting spiritual needs.  Insuring that people with disabilities and people without them can be integrated in the Jewish community is not about Hessed.  We are all blessed when we live together.

Ariel Goldberg grew up in Ottawa, Canada, and is currently a student at Yeshivat Hamivtar.

Links of the Month: Children, children, children – Chasiya Freilich July 28, 2010

Posted by jewishdisabilityunite in Links.
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Camp Simcha

This charity is based in the UK and in America. They are there to help children who suffer from various illnesses. They provide activities for the summer. They take the kids on outings and they have a retreat once a year for families. Each summer they have a sleep-away camp in America with trained helpers for the kids and all sorts of activities.

Kisharon

This is a school in London  for children who are learning disabled. They also provide a number of other services, catering for the children’s needs at every stage.  They also have residential services and employment offices.  They have a print shop and a bicycle shop as well. The kids themselves work there. The money they raise goes to the organisation.

Chai Lifeline

This is a charity that helps families of children who are seriously ill in a number of ways. They try to bring joy into their lives.  They also educate people in the Jewish community to care and understand what these families go through. Chai Lifeline provides food for people in hospitals, and transportation for families.

Aleh

This is a centre that helps with the advancement and rehabilitation of disabled children in Israel. They run a number of residential care homes for children with severe disabilities, providing them with the very best in care and education, and specially designed facilities for therapies and fun.

The Run of the Immigrant Danino – Natan Alterman July 25, 2010

Posted by jewishdisabilityunite in Society.
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David Danino’s file states that he is not capable of physical labour. The doctor has been told that he has a slight limp. The doctor asks Danino to run a few steps forward and back. Danino understands that this is a matter of life and death. He jumps forward more energetically than is quite necessarily and strains to prove that he walks and runs well. He then comes back and stands before the doctor, a mute expression in his eyes. The doctor judges that Danino’s defect does not disqualify him. In the hall, decorated with pictures of the king and with Moroccan flags, the families that have been disqualified are crying with audible sobs. The families that have been accepted for aliya disperse quietly, with confidence. Eager for the great future that lies before them.  – S. Tevet, Ha’Aretz.

Yes, this item too will not be lost.
This too is not forgotten.
A page of silence and of shame.
The page of the disgrace
of a father who jumped, jumped
and ran, as his children looked on, stunned.

The page of the disgrace
of a father whom the great Return to Zion
commanded to jump, and he,
in his little circle,
ran, ran, and in his heart
a prayer to God Almighty,
to help him not to feel
the aching in his leg…

And God Almighty heard him!
And so God said to him:
Run, run, servant Danino…
Run, thou shalt not stumble.
I am with thee!
If this be a law unto Israel
then we shall overcome it,
thou and I!

Run, run, servant Danino…
I am a help unto thee…
Run, run and fear thee not.
And I shall hide thy blemish.
And yet I shall not hide
the insult of My people’s resurrection,
the radiance of which
now glimmers in thy tear.

*

The poet Natan Alterman ran his “Seventh Column” in the popular journal Davar during the 50’s and 60’s in Israel. The column was a poetic commentary on items in the news, including some which may otherwise have passed with little public comment. Here, writing in 1955, Alterman takes note of the discriminatory immigration policy used in ‘selecting’ which Moroccan Jews could make use of the Law of Return. Translation: Jessica Sacks.

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