Tuesday, May 6, 2008

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.

3 comments:

Yaakov A. Mascetti said...

Hello William: I found the article deep and challenging. The question I have to ask is probably less relevant to Shmuel or Pinchos than it should be: anyways here it is. Where did you get the name for your blog? I mean, how can one be haredi and post-modern or open-minded at once? Isn't it a paradox? And if it is, is living hte paradoc your solution to it? Looking forward to future articles.

Daniel said...

Bill, I wish you success in your blog.

You wrote me that the title of the blog "is not a contradiction in terms!" basing yourself on Lear's non-defensive interpretation of the soul and the psyche, and evolving the idea to "the conviction that one can both be attuned to the authenticity of oneself and to ...the voice of Torah. But both require being open minded"

I would put it to you that the "authenticity of oneself" - the philosophy of ego ipse sum is in many ways kefirah as it denies the required total subjection of the individual to the halacha and hashkafa of the Torah. It's the quagmire that many of our Dati Leumi bretheren have fallen into, divesting the absolute control to that of sharing Torah with a non acquiescent modernity. This personal authenticity really is a dangerous tool in the wrong hands.

OpenMindedTorah gives the impression that starting with an open mind one can begin to examine and to investigate the Torah. Perhaps it would have been more fitting for the blog to have been called TorahOpenMinded. That way with the Torah paramount, it's possible to investigate issues that may conflict.

Bill, in my humble opinion, anything that is written by a frum yid for the public domain, for the edification of the gullible masses should be of the Dvekus HaShem genre. Conceptual ideas that give freedom of spirit without such bounds are only likely to confuse and estrange the individual from the truth as understood by our forefathers.

MiriK said...

Just a comment:
My Rabbi sends his children to a very special school. Although they are "normal" kids, they, DAVKA, learn with special children (I think that some of the special kids have Down's syndrome). Believe it or not, my Rabbi claims that not only that learning with special kids does not harm the "normal" kids, but it actually contributes to their education. Learning with special kids, my Rabbi says, nurtures his children's sensitivity and other mental skills.

May all people be like my Rabbi