Tuesday, May 12, 2009

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?

33 comments:

Tr8erGirl said...

Disgusted.......but not shocked.

My parents got the same resistance with my brother and didn't even try to get my sister in. The sent her to a non-Jewish Montessori school. She was the only DS student and they all LOVED her....

Ready to hand in your card yet.....?

Kenneth said...

I do not consider you an idealist: your weltanschauung appears to be informed by maintaining a dynamic equilibrium between Athens-and- Jerusalem; you seek, in the words of our Sages, to bring the beauty of Yavon into the tent of Shem. The particularly loathsome behavior of your local school principal merely validates the modus operandi of the haredi world; they don't want to bring Yavon into our tent. At the risk of oversimplification and haredi-bashing, we are dealing with a post-Holocaust mentality; a siege mentality. "We are the remnant of Tora-true Jews; we must remain physically and spiritually pure, and by isolating ourselves from the real world[tuma], by spending our lives in the bet midrash and kollel, ruminating on the ideal, and carefully arranging our shidduchim[i.e. like Yaakov Avinu breeding the spotted and streaked of Lavan's flocks]we will restore the Jewish people."
Lest you get the wrong impression, composing this posting was not the act of injecting venom into a wound; on the contrary, it is a painful, agonizing cri du coeur. Naive? Too idealistic? I truly fear, professor, that you are the one who has it right:
"Judaism offers the promise of a learning leading to action and tikkun olam."

Bob Martin said...

Thank you for having the courage to write about this.

Our traditions affirm a simple fact again and again: Everything that HaQodosh Borchu creates has a purpose. Yet here are the supposedly strictly Torah observant authorities acting like pagan goyim.

Something must change. Somehow we must divest ourselves of the galut mentality, the sophistry and casuistry that dominates the educational system. It's not only the anti-religious world that suffers from these poisons.

With only a few exceptions, I'd rather watch a Marx Brothers movie than talk with most allegedly high level Torah authorities. In a very real sense, there's no substantive difference. Except that the Marx Brothers have a more mature sense of humor and less arrogant pride than the self-appointed guardians of "normality".

The reaction formation of the self-proclaimed pious is a mask covering their real selves. The "excuse" of olam ha'sheker is a reflection of the moral and ethical level of those who use this specious argument. They live in a world of lies, no matter how "righteous" their outer behavior.

Tehillim 1 & 15 give us specific directions on how to deal with this kind of person.

Be strong and keep remembering who you are and what is the real purpose of Jewish life.

wdk said...

So, yes I wish there were a montessori in our neighborhood... Having said that, I share Kenneth's desire to hold back on the venom... I'm also not sure that I would frame things in terms of between Athens and Jerusalem (though come to think of it, Kenneth, I do it all the time). Just makes it seem like I have an agenda - which in this case is limited to trying to do the best things for my son... Not trying to inhabit a weltanshauung (I can't even spell that!), just want to get my kid into a school!

I agree that psychoanalytic terminology is relevant here - but not only for charedim, but for all segments of Jewry - especially in Israel (as I wrote about in my Memorial Day post)... Trauma is trauma, as either Freud or my grandfather once said, and we all have to try and deal with it...

And I'm hanging on to my card!

Jane D. said...

I don't get it, I thought Down's syndrome is common in the Haredi world. How is it usually dealt with? Where do the children learn if not local schools?

Another question, as a haredi man, doesn't this make you want to exclude yourself from such a group? Doesn't it bother you that the people that surround you claim to be something and turn out to be the opposite? Or maybe it's not a question of religion: would a secular school principal do the same thing?

Spinal Muscular Atrophy - Shira Fisher said...

William you and I need to sit down with some bourbon and beers and talk. I have run into this same thing. I don't know how many times I have been told that Hallacha are ideals we try and reach but most aren't living Torah they are reading Torah, davening Torah. There are so many reasons one can find to not practice Orthodoxy but my excuse are not the tough rules but the lack of humanity I have encountered time and time again. Yes, this lack of humanity is everywhere not just in Judaism but the last place I expected it was from the religious community I reached out to in desperation because of my daughter's condition. I have never seen people run so fast, take so little interest, be so down right ignorant, uncompromising, and superstitious than religious people! It's true I have also been blessed with a FEW people in our lives that are religious but they are far outnumbered by those that have little to no faith in g-d and great faith, love and compassion for humanity. I'm sorry you are experiencing this because I understand how much you and your wife love your son. And what is this talk about NORMAL. Since my daughter's diagnosis I have learned that there is normal I choose the term regular as there is no normal when it comes to people! All that matter's is that your son has wonderful brother's, sister's, parent's and family that will insure your son is truly loved by all of you like the love Hashem has for all living things!

Spinal Muscular Atrophy - Shira Fisher said...

William you say "Trauma is trauma" but maybe these people are not traumatized. Maybe these people are ignorant, racist, or flat out discriminatory! You are letting these people off the hook but they are only protecting their livelihood which is the selling of their product (program) so that they can pay their mortgages, car payments and put food on the table. Besides trauma it is also possible that these people suffer from a host of other psychological defects like the rest of the population can yet they are in positions of power. Like George Carlin used to say, "Some where in this world someone has an appointment with the world's worst doctor." Maybe you tried putting your son in the worlds worst school. LOL.....

wdk said...

One of the (sad) paradoxes is that though the charedi community has more children like shmuel, awareness of the challenges (and blessings!) of such children are not always fully appreciated. The charedi community - to speak in such broad sociological categories - feels that it has fulfilled its obligation (yotze) with special education programs. This is an unambivalently good thing, though awareness of other possibilities - mainstreaming - is unfortunately lacking.

So yes, the secular school principle would probably be more openminded. Though, to parents of in that same school, children like Shmuel might likely not be born - because of genetic testing.

And yeah it bothers me - couldn't you tell? But nothing is perfect...

wdk said...

Oh, and shira's dad, let's go all the way with the George Thorogood song - 'one scotch, one bourbon, one beer!' Let's not forget the single malt...

Cheers!

Spinal Muscular Atrophy - Shira Fisher said...

It seems to me that a significant portion of the population of Israel has Down Syndrom not unlike most other places here on earth. I guess its all about choices. Maybe you could integrate your son into a non religious setting and give him religion at home?

These statistics are calculated extrapolations of various prevalence or incidence rates against the populations of a particular country or region. The statistics used for prevalence/incidence of Down Syndrome are typically based on US, UK, Canadian or Australian prevalence or incidence statistics, which are then extrapolated using only the population of the other country.
http://www.wrongdiagnosis.com/d/down_syndrome/stats-country.htm

Israel Down Syndrom Mortality Rates
http://www.nationmaster.com/country/is-israel/mor-mortality

Down syndrome advocates lobby on Capitol Hill
http://www.patriciaebauer.com/2009/03/04/down-syndrome-capitol-hill/

400,000 down syndrom people in the U.S.

Education

Ricki Sabia, associate director of the National Down Syndrome Society Policy Center, called for a reevaluation of rules that allow local school districts to divert federal special education funds for other purposes.

The Individuals with Disabilities Education Act (IDEA) allows local districts to divert up to 50 percent of any federal funding they receive that exceeds the amount received in the previous year. Thus, Sabia said, whenever the federal government provides a local district with extra special education money, half of it can be used for purposes other than special education.

A TIME-SERIES ANALYSIS OF THE INCIDENCE OF DOWN'S SYNDROME IN WEST JERUSALEM1
SUSAN HARLAP2

2 Department of Medical Ecology, The Hebrew University-Hadassah Medical School P. O. Box 1172, Jerusalem, Israel

The age-adjusted monthly incidence of Down's syndrome has been studied in 42,340 births in 1964–1970 in the Jerusalem Perinatal Study. The overall rate was 2.4/1000 total births. There was a highly significant short-term cycle of 6 months with peaks among spring and autumn births in 6 of the 7 years studied that was independent of maternal age and standard of living. There was also a long-term decrease in Down's syndrome incidence, which may be part of a cycle of approximately 10 years. The data support the hypothesis that environmental factors play a major role in the etiology of Down's syndrome.
http://aje.oxfordjournals.org/cgi/content/abstract/99/3/210

Down syndrome in Israel
http://www.down-syndrome.org/reports/104/

Spinal Muscular Atrophy - Shira Fisher said...

From my research there seems to be many scholarly research articles that could help you decide more informatively if your thinking is " naive? too idealistic?

Ultra-orthodox Jewish teachers' self-efficacy and willingness for inclusion of pupils with special needs

http://www.informaworld.com/smpp/content~content=a713765481~db=all

Caring for people with disabilities in the Haredi community: adjustment mechanism in action

http://www.informaworld.com/smpp/content~content=a713618617~db=all

Religion and attitudes of college preservice teachers toward students with disabilities: implications for higher education

http://www.springerlink.com/content/87tu00n1705k7n51/

Struggling to cope with disabled chirldren's care

http://www.thejc.com/articles/struggling-cope-disabled-chirldrens-care

wdk said...

thanks's - as always - to shira's dad...

Lindsey Shapiro said...

Hate to get into the religious sectorial debate but why the Charedi/secular dichotomy? My experience in the (dare I add another sector) dati-leumi community is very different and my children have been direct beneficiaries of this kind of integration. Probably, more than any other social challenges in their lives,sitting on the same "safsal limudim" with downs kids made them the Ba'ale chesed they are. Think about that option.

Havlei said...

The concept of mainstreaming is in general a selfish parental endeavor designed to avoid stigmatized special education while ignoring
a. the current educational ability and needs of the child
b. the extra burden placed on his mainsteam teacher, presumably ill equipped to deal with physical disabilities
c. the school which as as a private institution can only survive financially by attracting the best students.

Mainstreaming was a government ideal in the UK when they created comprehensive schools. It was a miserable failure.

In the secular system in Israel, every borderline case is vetted and it is the authority that decides if a child has any possibility of succeeding better in a mainstream school thus disappointing thousands of prospective parents every year.

wdk said...

Mainstreaming is an option - just as is special education. Parents decide - hopefully not selfishly - according to the needs of their child. In many many cases, mainstreaming is the right choice for a child with downs. Like most parents, in consultation with counselors, friends and rabbis, we are trying to do the best for our son.

Perhaps Havlei, you have a special needs child? If so, you can contact Yated - an organization which helps in the mainstreaming of charedi special needs children.

Simon Synett said...

Havlei, you demonstrate an enormous lack of sensitivity in your unsolicited moralising, although your views seem to fit right in with your own obsession with the kankan, as seen here and here.

Annie said...

Hear, hear, Simon!

Spinal Muscular Atrophy - Shira Fisher said...

Havlei it's a known fact with Empirical evidence that shows that children with special needs that are mainstreamed progress in leaps and bounds. Also regular children that are exposed to special needs from an early age also develop broader communication styles not to mention becoming more caring human beings. You have obviously only done half of your homework. It is true that there are contradictions for every therapy but the benefits of integration far out way the contradictions on so many levels. But like anything it does take caring, compassion, hard work and education to provide the right environment. These qualities and skills are something even most regular teaches lack even in regular teacher student relationships but if Living Torah was implied in the school setting under the right frame work integration does work but it all comes down to will, humanity, caring and compassion traits I have learned many regular people do not possess.

Spinal Muscular Atrophy - Shira Fisher said...

I have to say William I really loved Hunter S. Thompson and his books and style of writing are a huge influence on me. I'm surprised and not surprised that you know him. You are obviously well read! I was quite disappointed that Hunter killed himself, I never expected him to do such a thing. I thought he was the type of guy that even if he became sick would take us all on the journey with him. I feel like I got ripped off! No more Thompsons, no more Bukowskis, mo more Kerouacs.......no more!

Menachem Lipkin said...

Wow! How incredibly timely. We are going through something similar, though not as severe, right now with our DS son, Yisrael Simcha. He’s 22 months old and will be aging out of a wonderful once a week program at Shalva in July. As much as my wife would like to keep him home another year she knows that the best thing for him is to have the socialization and structure of a Maon (daycare center) for at least a few hours a day.

We were approached nearly a year ago by a new local Maon to consider sending Yisrael there. They marketed themselves as a Shiluv (integrated) Maon and said they would include a number of DS kids. Once my wife checked it out she felt this would be a very good place for Yisrael. Just last week the social worker from the Maon told my wife that it’s no longer a sure thing that there will be a place for Yisrael. Apparently, the social worker intimated, they don’t want to get a reputation as a DS Maon!

So now we’re running around trying to find a private gan for him. In the end, we are beginning to realize, a private Gan may be better. There are pros and cons for each.

I’m sure it will all work out well. It’s just amazing to see this post at this time!

The Hedyot said...

I think I'll use that answer next time someone confronts me about my lack of mitzvah observance.

"Yes, I know I should be keeping shabbos, but we live in an olam sheker."

Pamela said...

so much to say about this as a proud mother of a 10yr old angel with DS. but maybe i will just say this: i am so proud of our school beis ya'akov d'rav hirschprung in montreal. apart from having my daughter and another girl with DS in the mainstream of the school, they have become trailblazers by starting a class for very low functioning girls (??) - wheelchair bound, mute etc. these girls have been integral to the lives of all the children of the school, participating in school functions, davening etc. BH should all schools follow this sterling example.
chag sameach to you all

Mark said...

At the very least, he could have had the decency to tell you the truth. Likely that someone in the administration or a big donor put pressure on him to deny your son entry. I'm very sorry to hear it, and hope you find a good school for your son.

Mark

Menachem Lipkin said...

This is actually worse than what you said. What this guy is really saying is not that the "Olam" is Sheker but that the "Oilam" is sheker, i.e. the Jewish oilam. The outside world has nothing to do with the way many Jews are behaving today. L'hefech. By insulating themselves more and more from the outside world and its checks and balances, they are creating a virulant strain of Judaism that is morphing into something that is "sheker".

wdk said...

Grateful for all of the supportive posts about my son.

And to Shira's dad: no Thompson or Kerouac, but we still have Dylan!

BrooklynWolf said...

William,

I am so sorry to hear about what you are going through.

If it's any consolation to you, however, I think you may have dodged a bullet. I would probably think twice about enrolling my kids in a school that is so small-minded that they think having a capable child with Down's Syndrome in attendance is an embarrassment.

I wish you much hatzlacha with your son. Please keep us posted.

The Wolf

ilanadavita said...

Hope you find a solution which suits you and your wife, as wel as Shmuel of course.

rickismom said...

I am the mother of a 14 year old daughter who has Down syndrome plus ADHD, and who has been integrated in a regular classroom from earliest pre-school through eithth gradein Israel. (Next year we are putting her in special ed, not due to her inability, but due to the inability of schools to be a bit flexible in important things like giving us the material to be studied in advance.)
I haver several point:
1. Mr. HaLevi, I don't know where you heard that England gave up on inclusion. It is false as can be. Down'sEd of England has studies that show consistantly the benefit of inclusion for children with Down syndrome. It is important to note that this "inclusion" is not taking the kid and dropping him into the regular classroom, period. Inclusion means taking the material to be studied, deciding what part of it this student needs to learn, and what other things we want him to get from the class. For example, when Ricki studied "Italy" in 6th grade, she did not need to learn as much as her classmates. But she learned a few pertinent facts, AND she did adapted school work, in which she worked on the following:
-writing sentences to label pictures of Italy. (for a picture of a vineyard: "In Italy there are vineyards.")
-learning to use a dictionary (looking up the definition of "Gondola")
-handwriting skills (copying the definition to her booklet
-increasing vocabulary: (matching words to definaitions) gondola, valley,port, export, import
-reading comprehension (reading the textbook text: either highlighted parts, or re-written easier version of original pasted into her copy of the text)

This year as she learned about telescopes, cameras, and microscopes, we did much of the same, but also did a whole work on using the yellow pages to find a camera store. And we did a similar "yellow-pages" task when studying "Shatnez" in chumasdh vayikra.

Mr. HaLevi, your statement that parents only send their children to inclusion "selfish parental endeavor designed to avoid stigmatized special education while ignoring" is INSULTING!!! As is the statement:"ignoring
the current educational ability and needs of the child".
This goes along with the canard always thrown at parents who expect their children with DS to read, etc, that we are "not accepting the reality of my child's retardation". EXCUSE ME!???!! I LIVE with my child. And I am the one who will have to deal with my child as an adult. I know EXACTLY what my child is-and isn't. But when an educator who has never ONCE read any up-to-date information on Down syndrome, has read NO studies, has gone to NO INTERNATIONAL conferences, tells me that "Children with Down syndrome can not learn to read", and expert educators in England have prooven not only that they CAN, but HOW to reach that goal, am I ignoring my child's needs by insisting that she be placed in a school with a siyat who will help her obtain this vital skill?

I would also point out that in the special ed classroom, the teacher and one aid are able to give each of the four pupils about a half-hour of one-on-one daily. My daughter in inclusion gets about two hours of one-on -one daily, plus the language and behavior benefits of the normal classroom. And it costs the government LESS.

Dena said...

What a painful thing to read. Sometimes I'm embarrassed to be Charedi.
I met your Shmuel on Shavuos at the F's house and he is an absolute LOVE.
May you have the Siyata Dishmaya you need to help him be the best Shmuel! Don't give up. I suspect that whatever progress you make will help other parents in your situation in the future.

rickismom said...

2. My second point:
I would suggest that you get the menahel to talk to other principals who HAVE integrated. (Contact Illil Leder, Yated mercaz shiluv for names). I have yet to hear of a school who integrated WITH PROPER SUPPORT who regretted it. And daily I get remarks from parents of Ricki's classmates that the class has gained TERRIFICALLY from her inclusion.
Finally, a bigger work load for the teacher? This is the job of the aid, to see that the workload does not fall on the teacher. Ricki's teachers main jobs this year was to:
1. Give me the material to be studied a day or two in advance
2. Be willing to ask Rina an easy question.

There is NO reason that accepting a child with Down syndrome should lower the image of the school.

Hint three: Chinuch atzmai "found" a school willing to take Ricki (after years of refusal) when we threatened to sue them over not fullfilling vaadat hasamach's recomendation for a learning -disabilities class placement (this refusal is illegal).

Havlei said...

If Rickismom would google “downs uk mainstreaming” she would find that while the few mainstream schools that are forced to accept Downs, they have to offer a form of special ed by bringing in specialized staff that can overlap that of the mainstream teachers.

As if it’s just charedi schools that have a problem, here in the heart of England, normal government schools find themselves fighting the wishes of the individual with those of the majority: http://www.guardian.co.uk/education/2009/may/19/downs-syndrome-school

rickismom said...

I will be answering Mr. Levi's last comment in full, in my post tomarrow morning (June 2, 2009) on my blog
http://beneaththewings.blogspot.com/
But in short, if he would read my previous comments carefully, he would see that nothing in the articles he quotes conteradicts what I say.

Tamar Orvell said...

I landed here after reading your interview on Ilana Davita's blog and excellent interview series. Kudos to you and your family for standing up for your child and for honesty and integrity. Fearful, ignorant, self-serving cowards abound in every shade of color, faith tradition, and so on. Fortunately, so do thoughtful, compassionate, positive, and enlightened everyday heroes. My motto: Stick with them, and shun when possible, those who dwell in olam ha'sheker.