Fear and Loathing in Jerusalem: the Olam Ha'Sheker Excuse

Spring time in Jerusalem, so yet once more, my wife and I embark on the path of finding a place for our son Shmuel with Down syndrome, this time in a cheder, a pre-kindergarden class in our neighborhood.

So earlier this week, we set up a meeting with the principal of a school around the block from our house. Not only was he cordial, but he had the look of someone who was genuinely interested in helping us with the education of our son. There had not been a child in his school with Down's syndrome for a generation, but listening carefully to our description of our son, his cordiality turned into what seemed like understanding. He invited us back the following day to meet with a rebbe and an administrator to discuss logistics - and how to integrate Shmuel and his 'syat' or 'shadow' into the classrom. The teacher of the class which the principal had in mind for Shmuel put it simply - 'my business is to teach children; and I'd do my best to teach Shmuel as any other child.' 'Though I am not a professor,' he continued with a wink, 'I do have thirty years of experience.'

As we were leaving - s'yata d'shmaya my wife said - another one of the rebbes, seeing Shmuel, stopped us, and mentioned that he had been a classmate of the boy with Down's syndrome from years back. To the questions which reflected the principal's main concerns - 'will he be disruptive?'; 'will he be accepted by the other boys?'; 'will he want to participate in class? - the rebbe answered with reassurance. As Tolstoy might put it, no two children are alike, and no two children with Down's syndrome are alike, but the rebbe only affirmed what we had told the principal - his classmate had been full of joy, eager to participate and imitiate, not at all disruptive. Shmuel's affability and good cheer - traits which prompt my wife to wonder what I would be like with an extra chromosome - and his cognitive high-functioning, we explained eagerly to the principal, are what brought us to mainstreaming and his neighborhood school in the first place.

A few days passed. I left some messages at the school, but my calls were not returned. When I finally reached the principal, he suggested I speak to someone else in the school -now a fourth person - who I was told would make the 'final decision.' It didn't sound good; so I pressed the principal instead.

'It's a very difficult decision...' His voice trailed off. 'Don't take this the wrong way Rav Kolbrener, and please don't be insulted....'

Calling me rabbi, I thought to myself, was a bad sign.

'It's a matter,' he hesitated, 'of considering the mossad.' It was now not just an elementary school, but an institute.

'What about the mossad?', I asked.

'Its reputation.'

I was silent.

'We have to think of what other parents will say when they see a child like Shmuel in the class with their normal children. How will we be able to justify it to them? They also have to be respected. It simply will not be good for the reputation of the school.'

I wasn't insulted, in fact I had heard versions of this before.

There was an undoubtable hint of frustration in his voice - likely I thought that those from whom he had sought advice had a different view of the 'mossad,' and were forcing him to do something against his better judgment. So I responded: 'we both know that what you are now advocating - acquiescing to close-mindeded and sanctioning fear of difference - is against our hashgafa, indeed I continued, any Torah perspective.' 'It's a chilul hashem,' I continued, 'a desecration of G-d's name, to send us away to schools outside of our community - to other schools, and other communities - when you yourself acknowledged that Shmuel could find a place in one of your classrooms.'

'And as far as ordinary children,' I went on, filling the silence, 'we are not children of Esau who find perfection in this world, but the b'nei Yisrael, children of Israel, of Jacob, who acknowledge that this world is a place of lack and imperfection.' 'I am a pragmatist,' I continued: 'if Shmuel is disruptive or can't be integrated into the class room, then we will take him out immediately, but if the experience of our home is true, if that of our building is true, of his nursery school are true, then Shmuel's presence will be a blessing for him, and for all who have the chance to be around him.'

'Rav Kolbrener' - again the wrong title - 'what you say is all emes l'emiso' - the undeniable truth, 'k'dosh k'doshim,' the holy of the holies, but, and I could almost see and feel his shoulders shrugging, 'we live in 'olam ha sheker - a world of lies.

Here it was - the olam ha'sheker excuse! I had heard people exclaim 'olam ha'sheker' as an expression of frustration; this was the first time I heard it as an explicit excuse. Using the olam ha'sheker excuse, not as a form of self-consolation, but justification for doing the wrong thing, turns Torah into something theoretical - 'we can't actually live by the words of Torah!' So Torah ceases to be a manual for life - a handbook for tikkun olam - the redemption of the world, but an ideal to which we aspire when not in conflict with our prejudices and fears. The principal couldn't help being honest: so he acknowledged that my words were true, even holy, but from the olam ha'sheker perspective, such truth and holiness don't have a place in the world. So Judaism transforms into a religion of ideals only. How often is such an excuse - even if not explicitly uttered - used as a means of justifying our laziness, self-interest or even corruption?

Traditions in the West in literature, philosophy and theology - from Homer to Plato to the apostle Paul - separate the ideal, take it out of the world. But Judaism - and this was one of the reasons that I started, years ago, to begin to split my time between the library and the beit midrash - transforms the real into the ideal, elevating the world. Judaism offers the promise of a learning which is not simply theoretical - those earnest discussions I used to have in the seminar room in graduate school - but a learning leading to action and tikkun olam.

Or perhaps this is naive? too idealistic?

Together!

I've written about Shmuel, my five year old son with Down's Syndrome, in an article that appeared in the Jewish Journal . In that article http://www.jewishjournal.com/home/preview.php?id=18896, my wife and daughters are the heroes of the story--who in their various and different ways are able to acknowledge and embrace Shmuel for his difference in ways that I was unable. I did have an insight at the time which I shared with my wife: 'if you think that individual prejudice against difference is bad, just wait until the institutional prejudice kicks in.'

In Jerusalem, such prejudice shows its face in educational institutions. True, up until now we have been blessed. In choosing between the options of shiluv (or mainstreaming) and special education, we chose the former option. Gan Tali in our Bayit Vegan neighborhood of Jerusalem has proven to be a place of warmth and support. It's true that at one of the first parent meetings some parents raised objections to the presence of our Shmuel, but Tali (who incidentally has no training in special education) silenced them sharply: "you're lucky to have a child like Shmuel in your child's gan." End of story.

At least for awhile. The blissful years of nursery school almost behind us, it was time to turn our attention toward primary school. There is a particular school in our neighborhood which we thought would be a promising place for Shmuel, but when my wife spoke to the school's administrator, she was told, “having a child with Down’s Syndrome will give the school a bad name.” A bad name! Besides, he continued, there are plenty of special education options; your son would be much better off in one of those.” This school principal claimed to know better, as he confided that he has a neice with Down’s Syndrome: “Placing a child in a normal context,” he went on, “will only burden the child with false expectations.” He might "come to think that he’s normal! and even entertain the dream that he might one day get married."

Well, yeah: false expectations. It's hard to get married: in fact, G-d, the midrash says, spends his time bringing couples together. So it is hard. But is it really so unreasonable to hope for Shmuel to get married? We try not to fast forward into the future (a good piece of advice for all parents), but there are assisted living facilities, and who knows? For me, it's certainly one of my greatest aspirations for Shmuel--that he get married, not so that he fulfills some idea of normalcy, but that he can connect with himself and find another with whom to connect, to build and grow together.

But we're not, for now, trying to get him married, we're trying to get him into first grade. And the school administrator's response raises issues beyond the obvious ones of derech eretz (good manners) and sensitivity, but about choosing educational approaches for special needs children. (It was satifsying to me that in a discussion of the issue at the shabbos table, my sixteen year old daughter and her friend asked: why would you want to send him to a school like that anyway?) Though in America and Europe, mainstreaming and special education are both recognized as reasonable options, in Israel, and most notably in the religious world, special education seems to be the only option (only two out of twenty-five special needs children in Israel, I'm told, are mainstreamed). It's most notable in the religious world, because it's that segment of the population that gives birth to the most children with Down's Syndrome. In a world of genetic testing, religious people are committed to the perspective opposite to the one that produces the 'designer baby.' Yet for all of these advances, the ability to fully accept and accommodate difference--on both a personal and communal level--remains limited. While years ago, special needs children were hidden away (and there are still cases where such children are given away at birth), now they are placed in special needs environments for day programs--out of the house, and sometimes off the map. Of course, I well understand that for some children and families, special education remains the pragmatic option, or even the best option. But the availablity of mainstreaming as an option entails a sensibility, a consciousness, that regrettably has yet to emerge fully in religious communities. The contrast to less observant communities is extraordinary and paradoxical. When I've given talks about Shmuel to such non-observant audiences in America, I've been struck by their sensitivities and their willingness to acknowledge and embrace difference--a far cry from the prejudice of the school administrator whom we encountered. But these are the very communities in which genetic testing is prevalent! It's an example of a principle articulated by Rav Tzaddok Ha Cohen: a person always has a weakness in the place of his greatest strength. And so a community. Which means that communities--however apparently far apart in sensibilities--have much to learn from each other.

Of course, Shmuel's current teacher--his ganenet--got it right. "Your child is blessed to be in the same gan with Shmuel." Tali was not playing lipservice to some abstract metaphysical notion, but she sees the benefits of integration in action--not only for Shmuel, but for the rest of the children in the gan. In fact, without mitigating our gratitude, it's probably they who benefit most. So I see it, every day, in our building. For Bayit Vegan, like many Jerusalem neighborhoods, is a conglomerate of cultures and neighborhoods: each building represents it's own community and specific culture. To suggest that my kids play with children from two buildings down the block would be like to suggest that they visit second cousins in Vermont. In such a world, there is no such thing as the 'playdate,' but rather children negotiating their own relationships and time. Our community--our building--is distinguished not only by the presence of Shmuel, but by his siblings and their friends--who have learned how to integrate Shmuel into their play. In this sense, even where special education is the chosen educational route, mainstreaming can still be a goal. Mainstreaming begins at home as an attitude, and can be an ideal even those who choose the educational stream of special ed.

Every morning in our house, the great debate ensues. The players are Shmuel and his younger brother Pinchos. The question is: who will accompany who to gan. The debate has predictable rhythms: Eema is usually the favorite first choice, but at some point Abba is also included in the argument. So: "Abba will take Shmuel, and Eema will take Pinchos." Or: "Eema will take Shmuel, and Abba will take Pinchos." But the result is almost always the same: the negotiation reaches its climax (sometimes heated), and then there's the agreement in unison: "Together!"

It's another one of those great insights that only our kids give us. Mainstreaming is not just an educational ideal, or at worst some forced ritual of inclusion. It's a practice, if given the opportunity, our children will live. And we adults, we just have to follow their lead.