Monday, May 19, 2008

Dentistry, Mainstreaming and the Zionist Dream

Any parent of a special needs child probably has a catalogue of "Things People Have Said but Should Not Have." It was difficult, for example, for me to hear the words of a friend on Simchas Torah who, upon seeing me at the shul celebrations, shook my hand gravely and said, "everyone has to suffer" (he apparently did not see Shmuel who was bouncing off the walls, dancing with glee). Comments like that one, one comes to understand, are almost never said out of malice. But there are some remarks to which one has to pay attention--like that of the dentist: "if you want his cavity filled, we'll have to put him under."

My wife Leslie is hesitant to give Shmuel a non-organic cup of carrot juice, so the prospect of general anaesthetic and a hospital visit was not a happy one. But asking around, we heard the same conclusions: "can't treat them like normal children; there's no other option." True, we have come to learn (from Elizabeth Mueller of Cincinnati who has thought seriously about "Dentistry for Children with Down's Syndrome" that a Down's child provides a special dental challenge, but it's one that does not have to end on the operating table. Fortunately we didn't have to go to Cincinnati to have Shmuel's cavity filled.

Enter Dr. Joshua Daniels of Jerusalem. He hadn't heard of Elizabeth Mueller, but he had heard of the Kolbrener children (all a joy in the dentist's office!), and he treated Shmuel as he treats the other siblings. That is, Dr. Daniels practices mainstreaming in dentistry: so for him, Shmuel may have required special attention, but in the dentist's office, not in the hospital. Such attention means that a visit to the dentist is more like a family visit, or a neighborhood visit, or even a chaotic block party--with various friends and families playing their appointed roles (holding Shmuel, caressing his hand, coaxing open his mouth). But yesterday, when Shmuel's sister Avital departed from her role, instead imploring the dentist to heed Shmuel's protests and refrain from pulling his infected tooth, Dr. Daniels responded not by silencing her empathic (and emphatic) cries, but by caressing and kissing Shmuel, and praising Avital's middos (character traits). Because Dr. Daniels is a tzaddik, as well as a great dentist, the visit ended in dental improvisation and musings on rachmonos (or mercy): "if a girl is crying for her brother as if she were crying for herself, how could I, as his dentist, ignore such cries?"

There are undoubtedly great dentists in other places, but the way in which the decayed tooth of a little boy became the focus of not only the dentist, and the boy's siblings, and the siblings' friends, and my wife, and her friend, not to mention the patients in the waiting room (who were inevitably drawn into the drama) was one of those Israeli events which resonates as much as any Independence Day celebration. Because the appointment transformed from a mere 'visit' into something like a community event, it also revealed another of the benefits of mainstreaming: like every other child, a special needs child reveals, through his difference, a particular aspect of tzelem elokim, the image of G-d. And in the process of engaging with that difference, we also come to encounter unexpected aspects of ourselves.

I do have to add that, unknown to Dr. Daniels, Avital had the upper hand all along. Sensing that the appointment might end in the pulling of Shmuel's tooth, Avital had, already that morning, davened for divine intercession, promising to donate one hundred shekels of her babysitting money if the extraction would be averted. That night, an old Yerushalmi came to our door asking for money to marry off his seventh child. The money was waiting.


Daniel said...

What on earth has Mainstreaming got to do with Dentistry? And what's the connection to the Zionist Dream?

However, there seems to be an inherent obsession in the articles concerning your DS son that everything possible should be done to avoid having Shmuel labeled as a special needs child.

For a parent trying to evade the reality, the stigma and the apparent dead end alley, that may appear to be the perfect solution.

But unfortunately in this theater of human adversity, there are two other groups of players whose needs are requited to be considered.

The first are those to whom the special need kid is entrusted. In the kindergarten where basic rudimentry skills are taught with abundant love and affection, perhaps the intrinsic difference to other non comprehending children may not be too apparent.

And similarly a good dentist or other artisan will also know how to develop skills to effect the necessary result.

But this is a far cry from the expected aptitude and volition in the academic world starting even at first grade. Almost every academic teacher even thru university has enough problems maintaining the interest and varying ability of the student with normal intelligence.

But DS:
*****************Start quote*****
"...Most kids with Down syndrome have mild to moderate mental retardation (IQ 30 to 60). Persons with Down syndrome at the upper end of the IQ range might attain 4th to 6th grade reading skills. Persons with Down syndrome can provide for basic self-help needs, and have varying degrees of educational achievement and social and occupational skills. They need special education, training facilities, and frequently sheltered living and work situations." Source: EncyMaster
******************End quote*******

So why should you think otherwise of the first grade teacher who feels mainstreaming is not justifiable, and who will surely not have the ability to successfully integrate such a student with his peers.

Would you welcome such a "stranger" into one of your university classes, just because you see it as a mitzva?

And finally to the third player, this unfortunate child that by mainstreaming will have to compete in a pugnacious world with minimal additional resources.

But what does Judaism say:

Chinuch LeNoar Al Pi Darko.

Give that kid what he needs right /now/. Special Ed programs have been designed for DS kids to utilize their maximum potential.

Yes, in the USA and UK there are bitter debates concerning the mainstreaming of marginal Special Ed kids.

Some of the mainstreamed have achieved success, but many more are not able to keep pace often exhibiting despondancy and resulting aggressive behaviour as an assertion of a false sense of authority. Some eventually return to the SE enviroment.

There are other marginals who start in SE and achieving high scores, are able to be integrated into mainstreaming.

Yes, Bill, your friend was right. Everyone has his Tzores in this world - it's part of the cleansing process in preparation for the world to come......Upstairs wants to see if you really love the stranger!

Yaakov A. Mascetti said...

Bill, beyond the inappropriate comments to your last posting, i do wish to write a few lines in relation to Shmuel's visit to the dentist. The question I was asking myself was: is it really necessary to see Shmuel from behind the lenses of halacha, mitzvas, and all the rest? Meaning: don't we fail, as you said that morning at Shmuel's bris, to see the child beyond "all narratives" if we keep struggling with narratives? Shmuel is a little boy, in need of education, love and, hopefully not on a regular basis, dental care. He will go to school with other boys, like all other boys. Special schools, smecial schools: as Avital asked, "Why should you send him to a special school in the first place?" Why does one have to categorize people? Why must a person, a father, a husband, a child, categorize the reality he lives in? I am personally not aware, as others evidently are, of what "emes" is, and am rather weary of those who see the world as a clear reflection of Divine will. What I want is my "re'ah" my neighbor, the person near me. My wife, my son, my daughter, my father, my mother. Why create obstacles? You know the way I have been distraught by my "she'elah" regarding my father -why those obstacles? I wrestled with them, and at the end of the struggle my thought is "Why struggle in the first place?" A father is a father, a son (genius, non-genius, below IQ 45 or below whatever) is always a son. The network of traditional definitions is sorely insufficient when it comes to the understanding of certain situations - DS is one of them, and I see points in common with my question too. Your religious response is still, I think, result of a struggle, of a need to justify the two extremes (a son and tradition) together. Who said you need to do so??

William Kolbrener said...

Yaakov, your posting requires further thought, but I'd just respond briefly. I think on the one hand Judaism requires just the form of attention that you describe. Think of Moses behind the cleft of the rock waiting for G-d to reveal himself in His Glory. When ever I think of the passage, I seem to think that I'm importing midrashic apsects, and then I go back to the Biblical verses, and see that the whole lengthy episode is in fact in there. The Torah itself is giving the sense of Moshe's wonder and unknowing at the revelation of the divine (after all he only sees the "back" of G-d). From the divine to the human (and there are many instances of this in the relation of the lives of the patriarchs), there's the similar sense that we stand in awe of the unknowability of the other. A very good friend said to me recently "I don't presume to know you." Well, why shouldn't he presume to know me? In fact, he knows more about me than almost all of the people I see on a daily basis. Yet he knows enough about me to be able to say, "I don't presume to know you." Was a nice thing to hear...
And yet. On the other hand, the Torah is also filled with multiple narratives which we enact liturgically, in holidays, in shabbos (what would a life without narration be like?). I've been thinking about the ways in which these two impulses--to avoid narration and to narrative--co-exist within the tradition... Your posting has given me a new impetus and new perspective for continued thought...

Yaakov A. Mascetti said...

Bill, thank you for your response. It is rather awkward for me to play spoil-game here, but I'm going to have do so nevertheless. I agree with you that life without narratives is inconceivable - terrifying. Yet, the pull for an unmediated encounter is always there - see for example the passage from the Torah that you mentioned. Moshe wanting to meet Gd - panim el panim. One can see where the Levinassian thing comes from... In any event, the need, the burning urge to see the other, without any mediation, is something which the halacha, at times, does not account for. Or should I call it tradition? Or should I call it the unbearably teleological perspective on reality and facts? Call it what you will - but a DS son is a simcha, a human being born from the love of his parents, and grows, especially in your family's case, in a context of strong familial relationships. Why, I thus have to repeat my question, should anyone even think of Divine intention in sending to a family a boy or a girl with DS? Does anyone do so in the case of a baby without any physical "particularities"? Did these "friends" of yours come up to you, when the other children were born, with a full-blown argument on the Divine middah revealed in the baby's birth? Why must narratives be inserted into the pure immediacy of fatherly love only in the case of 'charigut'? The major failure of the halacha, and of people who see only halacha and not the world around them, is one that disturbs me, it hurts, and with respect to my own very personal experience on this matter, one that has caused me great pain. A father is a father - a son is a son. What is there to interpret here? What is the connection with Moshe's "mlal u'mlal" (was it Onkelos or Targum Yonatan?)? It appears to me that a lot of Judaism's creativity, much of the simplicity of patriarchal message (especially that of Avraham), has been lost in the meanders of narratives - and mind you, I am not falling into the Pauline trap here, nor in a Rolling Stones type of need to see Gd and not talk about him. Avraham's "hinneni," his universal hospitality, his capacity to see the other in front of him, makes the prototype of a skill halacha, at times, makes us lose - and that is, how to appreciate the simplicity of relationships, whether with people, things, facts or whatever else. In this sense, I conclude, Avital's pain is not a middah - it is the pure suffering of a sister, a girl who loves her brother. It's a middah in the eyes of those present, those who want to interpret and categorize her feelings.

William Kolbrener said...

Interesting post... I do wonder about the extent to which such unmediated experiences are in fact possible... or in fact, are not themselves enabled through the kinds of narratives about which you have questions... What turns the desire, for example, for lack of mediation into chesed, and not some Heideggerian celebration of nature, or Nietzschian celebration of the self...? I think the experience of the other is always framed, and in fact made possible by those very narratives... There's no innocent experience of the other, it's not a skill (I agree), but a disposition which we have to actively cultivate (and I would think one way is through narratives)...
Which gets back to chinuch, naming the emotion--calling it a good middah--is a form of re-inforcement which allows for the cultivation of chesed as a way of being in the world... We kill to denote (is that Blake on Locke?), but sometimes it's through language that we bring life...

Yaakov A. Mascetti said...

Right, well, when you say "interesting" you mean, "are you serious?" Also: if halacha is a narrative, then why not change it when it become insufficient for the explanation of a person's reality? Halacha is not a narrative - it may have been so once, but today it is accepted as a universal set of values, which are immutable and rather stiff. Narratives change, they adapt to contexts (who better than a Skinnerian like you could understand this?) - Torah is not a narrative. So: if you are right, and we can't touch the world, and we can't relate directly to the people we want to relate with if not through language, then why can't that language be adapted? Why must one struggle? I find this thing of narratives terribly frustrating and at times even insulting (not in this case, mind you). Aren't we the one's who fashion these narratives? And if so, why must we then struggle to justify our existence in the face of the incapacity of these languages to acknowledge our needs and yearnings? All these questions, Bill, are not intended, has veshalom, as a polemic, but as a sincere expression of frustration with the so-called "orthodox halacha."

Daniel said...

Yaakov, without halacha, Judaism would have vanished generations ago. It's a life system that to have rules, which as the chachmim have said, can only be overturned by a bigger and more important Beth Din - otherwise you have anarchy.

And as far as your over simplistic view of non classification, we are living in the digital age in which determination of needs, roles etc can only be determined by such classification.

See today's excellemt article in the Jerusalem Post.

Since this blog is meandering into to topics which appear conflict with authentic Judaism (Heideggerian, Nietzschian!!) and since the beginning has lacked edification providing a platform for presumed academic verbosity, I hereby bid you all goodbye.

Yaakov A. Mascetti said...

Oh my, I must have said something wrong. Apologies Daniel, but I was just expostulating some of my questions regarding halachic Judaism to Bill. I know this goes against authentic Judaism - but you should not chide Bill for this. His intentions are to raise questions within the "game" - I'm the problematic one, and I will thus stop asking heretical questions. Apologies to Bill, and to Daniel.

William Kolbrener said...

I think authentic Judaism welcomes questions and shuns polemic (and ad hominem attacks!)... so I don't see why Yaakov would have any reason to apologize! Goodness!

Spinal Muscular Atrophy - Shira Fisher said...

For me the only thing you can compare caring for (in my case) a terminally ill child that has normal intelligence is that of Lech Lecha. Faith overrides intellect. All of you can intellectualize forever but until you walk the razor's edge and look death in the face you will not understand what it is to not have time to think. In the case of caring for those that would not be deemed "Regular" ( you learn not to use the term "Normal" as many "Normal" people are very messed up )the only thing i can liken it to is Lech Lecha. Avraham leaving the home he knew because he heard Hashem and followed his command. There was no stated Halacha at this point but there was an internal knowledge to do what was right. Like making an immediate life and death decision one does not have time to sit and ponder how all the great philosophers and schools of psychology would navigate such an experience you react. To me this is the pay off of religion and religious doctrine. Many people will never get it and while looking up what they need to know they will die or those they look after will die. Those that know what to do, that act immediately, that save themselves or their brother's life without thinking are in my opinion most connected to the divine. I believe that the term Tzaddik applies to those that are connected to those eternal truths that can't be spoken or written down; they live surrounded and in the presence of awe while many of us must live through life changing experiences to be aware of the presence of what is around us. You can master all of our heritages great subjects like gemara, talmud etc. but when that time comes and you must decide to do what's right from what i see here none of that can help you. Easing the pain and suffering of other's through action is the only thing that works, Lech Lecha! The opposite of compassion is indiference! We are talking about a human being and intellectualizing, why, how, what, you, me, them, I and thou (oops). In the end it is my opinion that some nasty old men that had the capacity to control, had power, and were the accepted authority wrote a lot of halacha (oooh blasphemy). I find it hard to believe that our g-d is as punitive as much of the halacha written through the ages. You don't breed love with so many punitive rules you create an environment of us and them, segregation and hate. "He who preserves one soul is considered as if he had preserved a whole world." Get out there and preserve and pull your collective heads out of your collective arsses (oops).

Spinal Muscular Atrophy - Shira Fisher said...

Daniel i read the article. I totally disagree with the article. Not only do i disagree but lets face it even the orthodox jews of today would be like re constructionists or even less religious as compared to our forefathers during the time of the holy temple. You don't hear us Conservatives, modern orthodox and everyone else telling the Haredi to throw in the towel because they got it all wrong as compared to when the temple was around. What about the long standing feud between the Hassids and the Haredi or Orthodox. Why not just accept everyone and call it a day. As it says in torah we all have a place in heaven so what's the big deal. Wouldn't it be terrible when you get there and you will and you find some guy that never stepped in a synagogue or prayed 1 prayer in his life but for reasons only Hashem might know is at a higher rung than you! Its ok to believe in what you believe in but its also ok for all the other jews to believe the way they want to. Even the orthodox turned on each other forcing a new movement as a backlash known as Hassidism. I guess as jews we are born to disagree in times of wealth and plenty and when all hell breaks loose and we are threatened as a people we will all become brothers again, orthodox, Hassid, Re constructionist, Conservative with no lines of division because we will need to depend on each other to survive. This is why this argument seems so ludicrous to me. When Jews were put into gas chambers or lined up getting ready to be shot in the head no body separated them into Orthodox, Conservative, Atheist etc. we were all equal in the eyes of our enemy just like Hashem.

Yaakov A. Mascetti said...

Shavua tov. This afternoon I took my children to the playground to run around a bit, and there Yedidia, my bechor, met his best friend and classmate, Yonah. The latter has an autistic bigger brother, Gavriel. Gavriel is a boy who lives in a live of his own, and who greatly enjoys running around in the playground. Avigail and Yedidia played with Gavriel and Yonah - normality and deviation was right there a fiction which I could not project onto anyone. There were just kids playing. Gavriel is certainly a handful for his parents - but he is not a tzarah, and certainly I would not discuss in front of his parents what was Gd's middah in bringing a boy like him to a family like theirs. Oh, by the way, something I wanted to ask Daniel last week too: who am I and who are you to say what Gd's intention is in bringing a child with autism or DS to this world (I know the difference between the two, yes)? And how do you know that it is all part of a major design to purify the soul (huh?) in perspective of its ascent to the Heavens? Authentic Judaism is a very comfortable illusion which you are very welcome to live, and I will not ask you to change your mind - but please, do not scorn or attack me because of what I think. Preference for ideals and conceptions over ahavat ha-re'ah is a dangerous short cut to Avodah zarah. Static ideals (authentic) are not what we are called to live - "bechukotai telechu" - movement, motion, kinesis, questions, destruction and reconstruction, more questions on the laws. And this afternoon those kids in that playground just ran and ran - together, to quote Bill.

Tr8erGirl said...

Hope Shmuel is feeling better!!

Annie said...

It took me a while to figure out what Mainstreaming has got to do with the Zionist Dream but I think I know now. If we could all learn to embrace difference, we would love and not hate. There would be no more wars, but only peace.
Thank you for your blog and for teaching us tolerance and love.

Daniel said...

While I felt that the aims of this blog was not worth the time investment and that the subsequent discussions presumed that just /mere/ mentions of Heidegger and Nietzsche, et al were supposed to elicit gasps of wonderment at their all encompassing philosophies, I decided it was time to exit.

However, the latest comments have been direct strikes on the bastions of what is considered authentic Judaism. I am not a rabbi or well versed in sources, nor am I here to convert the non-believer, but I will try to offer a defense…….

Yaakov, Even Hillel on his one foot would not be able to convince a person who is antagonistic. Yes by all mean question as in the Kuzari. Ask in order to find out what authentic Judaism has to say on an issue. But to have a bull-fight will not convince either side of the truth. Yaakov you don’t have to apologize and it’s not up to me to administer the nature of this blog.

Bill, much of the current comments are of polemics and as such you were correct that they should be shunned. I certainly hope that my words were not ad hominem attacks. If so, I earnestly beg forgiveness from whomever I insulted. However I did object to having my initial comment regarding the nature of a blog summed up in only two words: self-nullification and neither of those two words did justice or defined my stance. On top of which that blog article was cross-posted to my good friends at crosscurrents without including the original article on which it was based.

Brad & Maxime (Spinal Muscular Atrophy - Shira Fisher),

We all pray that a cure will be found to restore your child before it is too late.

I do not wish the get involved in a orthodox-conservative/reform debate, but a few of the points in your long comment should be answered.

1. “Faith overrides intellect” – these are two different concepts that are not necessarily connected one with the other.

We have to believe that everything in this world happens because the Almighty decided so. How otherwise can a religious Jew explain the Holocaust, the Downs Syndrome, and the Spinal Muscular Atrophy child, amongst the many other catastrophes that have befallen our people.

2. What has stated halacha got to do with Avraham leaving his home? Sure in a life and death situation, if the saving of life requires the person to eat pig meat or to transgress the Shabbat, that is also the halacha. Also no authentic Jew would spend precious time examining the halacha while a person’s life is in a state of balance if that authentic Jew can really effect a necessary action.

3. “nasty old men that had the capacity to control, had power, and were the accepted authority wrote a lot of halacha” - Were the founders of the American constitution back in the 1700’s also nasty old men? Did not the constitution allow slavery, segregation, quotas, the electric chair and life incarceration for Pollard? I cannot even react to such ignoramus statements.

4. What proof makes you think today’s authentic Jews would be Reconstructionist compared to the Jews of the Temple days? Very little has changed for the authentic Jew of a consequential nature.

And today there is no feud between the Hassidim and other authentic Jews, because Hassidim have accepted that authentic way of life. Two hundred years ago they distanced themselves from the guidance of Gedolei Torah because their haskafa was divergent from the accepted tradition.

Your concept that whatever a Jew does is alright because we all have a place in heaven is a mis-conjecture. All Jews will eventually stand before the heavenly tribunal and be arraigned and punished for sins committed – some landing in Gehinom for longer or shorter periods. But is that the function of society? Lets be anarchists since /all/ of us will eventually land up 2 feet under?

Authentic Judaism holds that every Jew is responsible for his neighbor. Authentic Jews are responsible for allowing a non observant Jew to sin, while it was possible to prevent him from doing so.

But be that as it may, look at the facts. Without halacha, Shabbat becomes a Memorial weekend with an occasional service attendance, Passover a secular Thanksgiving day, kashrut is forsaken while munching on a McDonalds Cheeseburger, Mikveh is replaced by a swimming pool and the children date non-Jews leading to voluntary annihilation within a few generations.

No the argument is not “ludicrous” – even during the terrible times in the camps, the authentic Jews kept their “division” and would not sacrifice their authentic tradition.

Brad and Maxime, all of us sympathize with your plight, as we do with Bill.
Love, affection and doing what’s best in the kids interest without self consideration is a big mitzvah, which will surely stand you in good stead when that time comes.

William Kolbrener said...

Thanks tr8der! A quick update is also in order... Another day, another dental emergency... Today, it was the emergency pediatric clinic at Ein Kerem... Which is to clarify: I don't think I'm 'obsessed' with maintreaming: it's obviously a legitimate option, indeed the best option for some parents... I also don't rule out the possibility of making use of the varieties of special ed options available in Jerusalem. As far as 'mainstreaming' and dentisty, some Downs kids, because of respiratory impasses, can't have conventional sedative treatments with gas. In some cases, general anaesthesia is the only option... gulp... Which is why we were anxious to have Shmuel treated in a conventional context.

As for the citation issue, perhaps cross-current readers will come to this blog for the full story...!

Gil said...

Hi, I'm coming to Israel next week and my dentist recommended that I see Dr. Daniels for some work I need done. When i googled his name to find his contact info the only hit that I found was your blog. Do you have his email or a way that I can get in touch w/him. Thanks


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