Ads


The Gift No One Wants Until They Get It

Shmuley Boteach, the Orthodox Jewish rabbi and author of bestselling books, is perhaps best known as a friend and adviser to the late “King of Pop,” Michael Jackson. He is also currently a Republican candidate for Congress in Bergen County, New Jersey.

This is all to say that he is a man—a religious man, at that—with a voice in the public square. I’ve never read his books, in part because books with titles such as Kosher Sex, Kosher Adultery: Seduce and Sin with your Spouse, and Kosher Jesus don’t often find their way into my Amazon cart.

But I am the father of a child with Down syndrome, so when someone sounds off in the media on that subject, it often finds its way to me and I am almost always interested in reading it. Last week, Rabbi Shmuley published a piece on the Huffington Post with the provocative title, “Why Does G-d Allow Children to Be Born with Disabilities?”

It’s a time-honored question. And I was very interested in his take on some theological differences between the Jewish and Christian traditions:


Whenever Jews witness human suffering, we never accept it, we do not seek to understand it, and we do not explain it away as something lofty and blessed. Indeed, one of the principal differences between Christianity and Judaism is that the former insists that suffering can be redemptive—as when Jesus suffers on the cross to pardon human sin—while the latter insists that suffering is a tragedy without redemptive merit that must be remedied and removed.

Interesting. I never really thought of it that way.

But I found much in Rabbi Shmuley’s piece to take issue with, notably his presumption that those born with developmental or physical disabilities suffer by virtue of their differences. I am not at all at ease with this notion, as it presupposes an objectively “normal” physiological and/or mental state, deviation from which amounts to something akin to pain.

To be sure, there is suffering associated with some disabilities. But can Rabbi Shmuley say with certainty that the disabled suffer more than the non-disabled? Can he say that my daughter, Magdalena, will suffer more in this life by virtue of her disabilities than her “normal” older sister will? Her older sister, after all, will probably be betrayed by a close friend. She will surely end up with a boss who makes her feel like a useless idiot. She may alienate those who love her, and spend a good portion of her life fretting about missed opportunities and poor choices.

Yes, Magdalena will miss out on most of that. Is she worse off because of it? Does Rabbi Shmuley know for sure?

But my gripe with Rabbi Shmuley goes far deeper than merely his inelegant, and perhaps inadvertent, choice of words. If he’d limited his piece to a meditation on religious teachings on disability, I would not feel compelled to respond. But I am compelled to respond. Here’s why. He writes:


Even as we love and cherish every Down-syndrome child, we dare never dignify Down syndrome itself, and I honor all doctors who work tirelessly so that this disease can be purged and children came into the world healthy.

Where to begin? Down syndrome is not a disease. A syndrome—any syndrome—is merely a combination of symptoms or associated characteristics. My daughter is not ill by virtue of having Down syndrome, and saying so is just plain wrong. I could not sit idly by as someone with such a prominent perch in the public square spread misinformation on an issue as dear to my heart as this one. So I Tweeted to Rabbi Shmuley to set him straight. Here’s what I wrote:

“@RabbiShmuley Some interesting things to think about in your HuffPo piece on disability. But 1 thing wrong: Down syndrome is not a disease.”

To which he replied, “My point is it’s not a blessing.”

“You're wrong @RabbiShmuley,” I wrote back. “Down syndrome is the gift no one wants until they get it.”

I included for him a link to "A Gift Named Magdalena," a piece I wrote last year. In it, I explained that, “Magdalena isn’t sick. Down syndrome is not a disease; it’s merely a collection of traits, all of which occur, though not all at once, in so-called ‘normal’ people.”

Something tells me he didn’t actually read the piece. His final reply was both dismissive and condescending: “Gift? Seriously?”

If he had read it, he would have been asked to grapple with these questions:


How could a lifetime of likely dependency be a gift? How could impaired cognitive development be a gift? Wouldn’t you think it a gift to live every day with someone who is always happy to see you? Wouldn’t you be grateful to have a child who never judges other people, or insults them, or begrudges them?

Rabbi Shmuley seems like a sharp guy. If I lived in Bergen County I would probably vote for him. But his piece, and our Twitter exchange, indicate that he lacks both empathy and imagination. He may know about the gift of “kosher sex,” but I can assure you he knows next to nothing about the gift of Down syndrome.

Down syndrome is the gift that no one wants until they get it. I know, because my family received it. Don’t listen to anyone who tells you otherwise.

Matthew Hennessey is a writer and editor who lives in New Canaan, CT. You can follow him on Twitter @MattHennessey.

RESOURCES

Shmuley Boteach, Why Does G-d Allow Children to Be Born with Disabilities?

Matthew Hennessey, A Gift Named Magdalena

Become a fan of First Things on Facebook, subscribe to First Things via RSS, and follow First Things on Twitter.

Comments:

5.11.2012 | 11:33am
Rob M says:
Other comments of Boteach that appeared in The Record (Bergen County, NJ)
include one on suffering ("Suffering has no redemptive value," The Record, November 18, 2010; Web site: northjersey.com). In that he attempted to interpret Christian theology, and did so badly. However, in another commentary piece in The Record (which I haven't been able to track down) he seems to do just a bad job regarding Jewish theology. Re gay marriage and the prohibition on homosexual activity, he said to one couple, "Well, at least you can try to keep the other 612 commandments."
5.11.2012 | 2:24pm
Scott Miller says:
Rabbi Shmuley doesn't have the advantage of recognizing the New Testament as scripture. If he did, he would see the popular verses on grace in Ephesians 2 are followed by one on works: "For by grace are ye saved through faith; and that not of yourselves: it is the gift of God: Not of works, lest any man should boast. For we are his workmanship, created in Christ Jesus unto good works, which God hath before ordained that we should walk in them." Thus, our good works are not ours, but God's, given us to do by his grace. If I were a doctor or a nurse, God may have ordained me to do good works by caring for patients, but it would also require that He send me patients to treat. All the medical staff on earth are worthless without patients, who God has also ordained to participate in the good works by letting caretakers care for them. Both the patient and the doctor are participating in the good works that God does through them. One thing about Magdalena; Her life will be crossed by many with the opportunity to do good to her, or to take advantage of her disadvantage to do evil. For everyone who does a good work for her, she is a participant in that good work that God has ordained. Everyone who does her wrong, she will be doing a good work in enduring it. On the day of judgment we may be surprised to see that God has done more good works through Magdalena than many who we thought of as good people. To Rabbi Shmuley, I would say: Gift - Really.
5.11.2012 | 5:02pm
andrew says:
i didn't know rabbis could be so obtuse....

whether or not suffering is redemptive probably depends on the sufferer, not the suffering. as c. s. lewis puts it somewhere, nothing that hasn't been killed will ever be resurrected. since the point of life is holiness, since the sine qua non of holiness is self-giving, since self-giving in this world is always painful, like undergoing surgery, ultimately the point of life is redemptive suffering unto holiness. this fact is empirically observable -- just ask the saints and those on the journey.

gibran, of all people, once wrote that sorrow carves us in ways that help us contain more joy. i think he's right on this one, at least for some of us.

could it be said that those with down syndrome might be less fallen than the rest of us? if so, perhaps they do suffer less, not more than us.

finally, one small quibble: i can imagine many couples who would love to adopt a child with down syndrome -- perhaps it isn't necessarily true that these children are gifts "no one wants."
5.11.2012 | 11:03pm
Mark says:
Just a slight clarification of the facts. Your comment that "Down syndrome" Is not a disease but a syndrome, or a combination of symptoms or characteristics, is only partially correct. The name, Down syndrome was coined 100 years before the genetic cause of the disorder was identified which Jerome Lejeune then more appropriately renamed trisomy 21. Syndromes are associated with symptoms that have no identified cause. Diseases, or disorders are conditions in which the cause is understood and which have an identifiable group of signs or symptoms. Trisomy 21 is a caused by a chromosomal disorder resulting in an extra copy of chromosome 21. Think AIDS before identification of the virus that causes the symptoms. No one would still refer to AIDS as a syndrome. With regard to suffering, please remember that trisomy 21 is a neurodegenerative disorder and is also the cause of a multitude of associated maladies that researchers are working to resolve. There are many individuals living with trisomy 21 who do plenty of physical suffering, not just social or emotional. as the father of a 10 year do trisomy 21 son who is in remarkable physical health I completely understand the gift. He is a tremendous joy to our family and a great blessing from God. I know too, however, that unless researchers are successful his future could be quite difficult. Every individual with an additional 21st chromosome will have brain characteristics similar to an Alzheimer's patient by age 35, and this is without exception. To not acknowledge the true nature of trisomy 21 as a genetic disorder and therefore support research oriented to resolving the many cognitive and physical disabilities associated with it is to turn a blind eye toward an often unpleasant eventuality - an eventuality that I'm willing to work very hard to overcome.
5.12.2012 | 2:06am
sse hu says:
Dear unknown friend in GD

due to my own life experiences i agree totally with your point of view
everything we experience is GDS GRACE so for me your feeling in this theme is authentic and authenticity is whats all about for myself
regarding Rabbi Boteach i am so grateful for hiw work regarding JESUS he was born a jew he was an orthodox jew who wanted to go back to the roots to get rid of the terrible roman occupation all his words are from the jewish bible nothing new in his words he never wanted to found a "religion"
besides in my opinion nobody is allowed to speak int the name of any entity
each and every soul has to find hisher own way to GD
in respec to your way i remain sincerely yours sse hu
5.12.2012 | 4:06am
Rick says:
I worked with many disabled kids in Morocco and Mexico in my earlier days, my wife and I have friends here who have Down's kids and autistic kids, and we are well acquainted with both the trials and joys of parenting these special children.

In our case, though, we have "The Gift Everyone Wants Until They Get It": an intellectually gifted child. "Oh, it must be wonderful to have a gifted child," many people swoon. Think again. Having a child is always a wonderful gift and incredible responsibility, but having a gifted child just comes with a different package of headaches. One thing Brendan has in common with disabled kids is that he is different from most of his classmates and is sometimes disliked or rejected for that reason. We didn't really understand why he was having so much trouble in the 4th grade and was coming unglued emotionally at home until we took him for an evaluation at the gifted studies center at our university. There, he was evaluated as being highly gifted, and that diagnosis obliged the school to take special steps to accomodate him. He was accelerated two years in science and math, he was separated from the home room teacher who was at her wits end with being constantly corrected by him in class (he was usually right and she was wrong), and he finally pulled out of his crisis.

It's still a rough ride dealing with such a mercurial, iron-willed, hypersensitive child who never misses an opportunity to let you know that you are in error, even if he can do it with an outrageous sense of humor. What puzzles Brendan, though, is why people aren't grateful when he proves to them how wrong they are. And our great educational challenge is to teach him that in the long run it's far more important to have good friends that it is to be right. There are glimmerings of maturity emerging, though, and he is now making friends that he seems to genuinely care about. By the grace of God he may finally develop into a deep, whole human being. If so, we can lie down and die some day in peace, knowing that our job was accomplished.

Different child, different challenges. But each and every one of them is a special gift.
5.12.2012 | 5:16am
Eliyahu Konn says:
Mark the commentator has a scientific understanding of the situation which can be examined which can be agreed upon based upon fact and reality. Hennessey's explanation strongly suggests he doesn't know or rejects the apparent facts of the short life span and Alzheimer's that is to come for those with Down's Syndrome.

For Christians and Jews alike, science and objective data should help them to overcome misconception and disease.

The Netzarim are advocating for objectivity in life's great questions. Please visit netzarim.co.il to find out how.
5.12.2012 | 11:42am
The "suffers with" and "afflicted with" Down syndrome descriptors have always bothered me. It's like saying my son suffers from having blonde hair or is afflicted with blue eyes. It's a genetic trait. Anyone who has a family member with Down syndrome knows there is very little suffering going on. Max has enriched the lives of our family, his classmates & educators, just about everyone he meets with his joy of life. THose who use terms like this are simply ignorant and have no experience with an individual with Down syndrome.
5.12.2012 | 7:05pm
Gary Huber says:
So when I watched my father suffer and die of cancer when I was a young boy, I should count that as a great gift and blessing? I'm sure that cancer was not part of God's original plan; is that any different than a duplicated chromosome? As a Christian, I do not deny that some good came out of my father's suffering, and God in His plan allows these things to happen, but I have a hard time seeing it as a blessing.
5.12.2012 | 10:06pm
G says:
Rabbi Boteach says: “Judaism... insists that suffering is a tragedy without redemptive merit that must be remedied and removed”.

He may be right that it is every person’s duty to try to remedy and remove suffering, as much as possible. But it is not the case that in Judaism suffering is seen as tragedy with no redemptive merit. To begin with, it is highly unlikely that ‘Judaism’ speaks with one unified voice on pretty much anything – it is a theologically capacious religion. For just one text that presents a very different viewpoint to Rabbi Boteach’s, see the following Talmudic passage, which introduces the notion of ‘sufferings of love’:

“Raba (some say, R. Hisda) says: If a man sees that painful sufferings visit him, let him examine his conduct. For it is said: ‘Let us search and try our ways, and return unto the Lord’. If he examines and finds nothing [objectionable], let him attribute it to the neglect of the study of the Torah. For it is said: ‘Happy is the man whom Thou chastenest, O Lord, and teachest out of Thy law’. If he did attribute it [thus], and still did not find [this to be the cause], let him be sure that these are sufferings of love. For it is said: ‘For whom the Lord loveth He correcteth’.” (Talmud Bavli, Tractate Brachot, 5b)
5.13.2012 | 12:12am
Brad says:
Great article...the quote is so true. I always refer to it as my most unexpected and extraordinary gift. The rabbi cannot understand it, but what he is missing is exactly what having my daughter helped me gain...a much deeper understanding of the human condition.
5.13.2012 | 2:27pm
Michael says:
Interesting concepts to think about. Raises some questions though. If it is a gift why do we look for a cure for it? It allows someone to experience humanity outside the norm of what that experience usually means. The same could be said for a number of, for the sake of convienance lets call them conditions. One that comes to mind is autism. I could contruct a similiar argument for homosexuality and any number of mental conditions some of which arguably have positive aspects and some of which have none. Should we try to cure some? None? does require a weighing of the nagative and positive aspects? Admittedly I have not read the authors article and perhaps he answers these questions. I have no doubt that his daughter is a blessing and a gift to him. I am also not questioning her worth as an individual. I guess I am asking what would be best for her. I would ask the author if a pill were developed tommorrow that would erase your daughters Downs Syndrome would you give it to her?
5.13.2012 | 7:02pm
Peter Nyikos says:
This article illustrates the limitations of extra-short Tweet messages. I think some genuine discussion could have resulted if the second message had been long enough to include two of the questions in the link that the rabbi apparently never read:

"Wouldn’t you think it a gift to live every day with someone who is always happy to see you? Wouldn’t you be grateful to have a child who never judges other people, or insults them, or begrudges them?"
5.14.2012 | 11:37am
Above, Michael asks ... "if a pill were developed tomorrow that would erase your daughter's Down syndrome, would you give it to her?"

I'm glad he asked this question because it gets right to the heart of what I'm trying to convey to Rabbi Shmuley and, indeed, to the whole world.

My daughter's Down syndrome is not a curse, it's not a disease, it simply *is*. And by that I mean, Down syndrome is who she is. I know this is difficult for people to accept. But there is no other Magdalena, one that is cleaner, purer, or undefiled by these extra copies of the 21st chromosome. Suggesting otherwise is an insult to her dignity.

As George Will noted in his recent column celebrating his son Jon's 40th birthday, "Down syndrome did not alter the trajectory of his life; Jon was Jon from conception on."

Similarly, Magdalena was Magdalena from conception. There was no moment when the real Magdalena was suddenly obscured behind the mask of Down syndrome. When her parents chromosomes came together, Magdalena's Down syndrome was there.

So asking if I would giver her a pill to make it all go away is, to me, the same as asking, "Would you trade in your child for a new one if you could?" We can agree that it's morally repugnant to think of human beings in the way that we think of used cars, can't we?

Magdalena's life is a gift precisely because every life is a gift. The one known cure for her Down syndrome is prenatal murder. Now -- if I could take a pill and make that go away, I'd have to consider it.
5.14.2012 | 12:55pm
KHH says:
Mr. Hennessey, Thank you for this article. One of my sister's in law has a nephew who has Down syndrome so I always keep an eye out for resources for her and her family. But it was actually your comment just above that struck me most forcefully and made me confront my own assumptions. (Some I didn't even know I had). I have all the advantages of being Catholic and knowing Catholic social teaching and still would've fallen into the false trap of "the magic pill". Thank you, thank you, thank you for making clear exactly how pernicious and ugly that idea is.
5.15.2012 | 12:51am
Gian says:
If one thinks reductively in terms of genes, then one is obliged to view Down's syndrome babies as defective. But as Hennessey makes clear, this is not the end of matter and is an incorrect perspective to reduce a human to genes.
5.15.2012 | 3:33pm
Mark says:
The Servant of God, Jerome Lejeune, discovered the genetic cause of trisomy 21 in 1958 just two years after amniocentesis was used for the first time to prenatally diagnose chromosomal abnormalities. He knew what his discovery would bring, and he was correct - a 96% abortion rate in his native France. He believed that the only way to save children with trisomy 21 was to cure them. What is being discussed here is a very important question. Do we accept this genetic accident and the blessings which follow in the birth of our children as part of the divine will, or do we pursue treatments to a "cure" that may improve the lives of our children over the lifespan and encourage women to accept the birth of their children rather than abortion. I don't know that is has to be one or the other - but to be opposed to the pursuit of a "cure" would seem to be opposed to one possible way to reduce the horrific genocide of these beautiful children.
5.17.2012 | 1:48am
Sheila says:
My son Ross had Menkes Disease. When he was about seven years old, he asked, "Why do people say that I suffer from Menkes Disease?" We had a brief conversation about the meaning of the phrase, and it was clear that he understood it. I then said, "So, it's true. You do suffer from Menkes Disease." "I know", he replied, unmollified, "It's just that it makes it sound like it's the only thing I do!"
5.18.2012 | 1:30pm
Mercy says:
I'm glad I read the rabbi's article before responding because I was prepared to be offended by it but actually I was not. The final paragraph stands out for me:

"Why does God allow the innocent to suffer? I have no idea. He shouldn't. But our job is to fill in the empty spaces G-d seemingly vacates in His universe and to act in G-d's stead, being as human and loving as we can."

Many people feel as the rabbi does --- that a disability is a tragedy, but that does not make the person's life tragic. It seems contradictory but really it is not. It is a very human reaction. My in-laws adore my sons who both have autism. But would they prefer my kids were "normal" so their lives would be easier? Absolutely. And for the most part, so would I. That does not mean I don't see the gifts of their uniqueness and some incredible skills mentally (one of my sons is very high functioning). But I'm also a mom who doesn't want to see her babies get bullied or made fun of. Autism is not the gift. My sons are the gift. They just happen to have autism.

Anyway I loved your article and am glad I read it. It gave me a lot to think about, so thank you. And thank you for using your story to remind people that having a disability does not determine one's quality of life.

P.S. - One thing to remember is that Jews are more used to "wrestling with God" as the rabbi calls it, than Christians are. Christians are taught to accept God's word; Jews study it and argue about it. It doesn't make them less Jewish to do that. That is actually part of their religion. (My husband is Jewish and I am Catholic so I should qualify my statements somewhat.) As a Catholic, I am taught specifically *not* to question to the church.
type the text above in the box below

Links

Blogs

Find Us

Contact