Thursday, May 3, 2012

Let Special Needs People Speak for Themselves

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Question of the Week:

I saw you copped a beating from Shmuley Boteach in the Huffington Post this week. He totally trashed your article "Why Does G-d Create Handicapped Babies?" where you say that they are special souls who remain pure from sin in this world. He says we can't explain suffering and we shouldn't try. What is your response to that?

Answer:

Shmuley makes some very good points in his article. Whether or not the explanation I offered is helpful to those who have severe disabilities and their parents is a question neither I nor Shmuley Boteach can answer. Only they themselves know what it is like, and only they can comment. So below I present the feedback I received from those who have firsthand experience with disabilities. Let their words from the heart speak for themselves.

 

But I think Shmuley failed to understand an important principle.

There is a big difference between explaining why people suffer, and giving meaning to suffering. To explain why people suffer is to justify the existence of suffering. If we can explain it then we can tolerate it. That is wrong. We would rather a world without suffering, and we can never understand why G-d in His omnipotence couldn't create the world in such a way. Surely whatever benefit suffering brings could be achieved without suffering. Why we have to suffer is an unanswerable question.

But finding meaning in suffering is the attempt to give it purpose. After the fact, now that suffering does exist, we have to try to find meaning in that suffering. We need to learn something from it. This does not justify its existence, but at least it gives us something to focus on as we grapple with it.

To explain suffering is G-d's responsibility. To find meaning in it is our responsibility.

The idea that a physically limited body indicates a higher soul is not mine. It was taught by the great 16th century sage and chief rabbi of Prague, the Maharal. In his work Gevuros Hashem (chapter 28) he explains that the body is a casing that covers and limits the soul. However, when the body does not function correctly, while that may be described as a physical disability, for the soul it is an advantage. A less than functioning body is less of a covering for the soul, and allows it more freedom. Taking this idea further, the holy Baal Shem Tov, founder of the Chassidic movement, explicitly identified the severely handicapped as being pure souls who were being protected from the evils of this world. The Lubavitcher Rebbe once told a roomful of athletes from the Paralympics that they should not be called disabled, but rather gifted. And then there were rabbis such as the Chazon Ish and the Steipler Gaon who stood up in honour of special children as they entered the room.

These sages were not being patronizing, and they were not defending G-d. From their deeper perspective they saw in front of them fragile bodies housing powerful souls. Is this perspective helpful to those who actually experience disability firsthand? I can only share what those people have told me. Here are their unedited responses:

 

Yes but... as beautiful as you may think it is I would give anything to have a healthy child. Having a child with special needs can destroy the closest family. There's nothing wonderful about not being ever able to go on a family trip. There's nothing great about being put in very uncomfortable situations in public. We love our child but.. G-d I still feel I need You to clear some things up.

Posted By Dolly, Brooklyn, ny

I feel confident that I can speak with a certain authority on this topic as I am an adoptive father of 7 wonder children all born with special needs (some more severe than others).
I have a child that will most likely never walk or talk. So to the woman who posted named "Dolly from Brooklyn". I understand what you are dealing with.
I feel strongly that ALL souls are created in the image of the divine and feel it a wonderful priviledge to have been blessed with the joy that has come with parenting these children.
People tell us all the time that we will be rewarded for giving these children a home. But my feeling is that they in and of themselves are the reward. I thank G-d everyday for having these children in my life.
I would not trade a thing. With G-d's help we will be led to another child that needs a frum home.

Posted By Yermiyahu

Thank you very much, for this answered question I had in my heart. I have a downsyndrom little girl. This has blessed me like you can not imagine.
thank you. Mr. Moss

Posted By Anonymous

As the mother of a nearly 27 year old with cerebral palsy, I applaud Rabbi Moss for his answer. However there is more than just pure love, these children are sent as a blessing to the families in which they dwell. They are sent as teachers, not all of them die young, many live out a normal life span. Handicaps are only as severe as we allow them to be, having faith that G-d will help your child and doing everything you can to allow your child to be his or her best - will not only allow the parent to fully love and appreciate their child's uniqueness, but also teach the parent patience and teach them the ability to celebrate the smaller things in life.
Erma Bombeck wrote a column on how G-d chooses mothers...it's insightful, nuturing and thought provoking. Though I was afraid at first, I feel honored that G-d chose me to have a child who has challenged me to be a better mother, he is my firstborn blessing (there are 2 bio and 2 adopted siblings after him).

Posted By Michele Shapiro, Apple Valley, MN

I am the mother of a 16 year old with Down syndrome. She is legally deaf and has severe scoliosis. Whoever wrote this response has the Wisdom of Solomon because it completely captures what my heart tells me about my precious child.
I have never looked at her and felt pity or anguish or sadness, just gratitude. I'm so thankful G-d favored me as her mother. I can't look at her without seeing a perfect, precious soul. And if having such intimate contact with a perfect soul means a bit of inconvenience (and I really don't see anything as inconvenient) then so be it. I'll take it! We also have a beautiful little granddaughter (1 year) who was also born with Down syndrome. When she was born, (her parents' first child) rather than cry or grieve or display shock or anguish; they thought of my daughter - their baby's aunt and what joy she has brought into our lives and they turned to the doctor and almost in the same breath said "Baruch Hashem"!

Posted By Leah, Meridian, Idaho

I love what I just read. I am my self disabled, I thank hashem every day that gave me family and firends that love. I prey to Hashem to whatch over children of Isreal and my biggest wish is that Moshich comes.

Posted By alexnader Isakov, Phoenix, Arizona

we are the parents of twin boys (only one of whom has down syndrome) 18 months old. I believe that God gave us BOTH OF THEM as a gift to learn from and the joy I find in my Jacob (the one with downs) is just so aptly put by the rabbi as pure.... just as my other son's smile. I guess it makes me wonder what is truly worth calling "important". I love them both but this explanation is truly beautiful. We can only hope to live up to the great responsibility that hashem has placed on us. I was injured on the job seriously about 2 months after their birth, but the flip side is that God has let me see them develop and beat the odds that the doctors gave our jacob at the hospital. By the way, the doctor I hold responsible for my Jacobs recovery in the hospital last year was Muslim.

Posted By brian cooper, Meriden, c.t

my little brother is severely autistic and developmentally delayed... we adopted him when he was 5 years old and he is the best thing that ever happened to our family... i cried when i read this article because even though i think he is perfect the way he is sometimes it still makes me sad that he will never do so many things. the rabbi is right, people always want to judge people on what they can do for us. but sometimes G-d doesnt give people to us for what they can do for us, but for what we can do for them... we should be honoured that G-d would even entrust such a soul to our care

Posted By rachel

This article really touched me. I, myself, was actually born what I would consider severely disabled. Some of my struggles are a musculoskeletal disease, being confined to a wheelchair, having a weak body, having speech impediment, and having severe breathing issues, which greatly effect my quality of life. My whole life has been a blur of hospitals, doctors, operations, and the heartache of having to accept a completely different life than the average. I've wondered why God would allow some people to be disabled and be born to suffer for their whole lives while others get to live their life sometimes without much of a care in the world.
This was definitely very creative with the reasoning and just absolutely beautiful. I have such a hard time seeing the good in things, but this really actually had logic to it and touched my heart.

Posted By Alisha, Albemarle

I have a lovely down Syndrome boy of 21, and I am VERY sensitive to cliches or superficial stuff - and this was SO true.

Posted by anonymous

I was born with a severe disability, which is life long and causes me immense pain. This however is normal to me. The advantage is that I can automatically identify suffering in others and assisting others makes me happy.
I do not see my life as tragic. I have purpose.

Posted By Anonymous, Leeds, UK

i gave birth to my gorgeous little boy in march of 1998, he was born severly disabled, and is the light of my life, life is hard at times, but I would not change my life for anything in this world, my son cannot talk and shows me so much love in other ways. I was given my son for a reason, considering I was told I could not ever have children...

Posted By maria mayo, Gloucester, Gloucestershire

I can only stand in awe of these people. I can't explain why they had to face these challenges. But I can thank them for showing me that limitations of the body can't hold down the power of the soul.

Good Shabbos,

Rabbi Moss

 

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2 comments:

  1. I think the Rabbi almost gets it right, but his choice of words are poor and distort the message.

    It is not the disability that creates the suffering. It is the misunderstanding of it that creates the suffering. It is the misunderstanding of what is perfect and what is not perfect that creates the suffering.

    Perhaps the Rabbi would entertain the thought that we are the disabled ones, and those he labels as 'suffering with disabilities' are the one's who are actually perfected in G-d's image.

    Our own 'perfection' is further from the image of G-d, than children born with the lifelong ability to love themselves and others for a lifetime.

    I think we all mistakenly suffer from the shock of of a less than perfect child in the beginning, but some of us more than others, chose to carry that baggage of suffering which leads to poor choices and rash decisions. Some poor souls choose to give back the gift before even opening the package to find out what it really is. I have sympathy for those who lament and often make the 'choice' that destroy lives in more ways than one. I would speculate the divorce rates for that sub group is inexplicably high.

    Which is just another sign that we are the one's severely disabled and not the other way around.

    ReplyDelete
  2. Wow I absolutely loved and cherished your original article and I intend on returning to it to strengthen myself. It's been more than 20 years that I'm blessed with a sibling with a special soul but still need reminders.

    Shmuly Boteach's words and message were insulting, rude, depressing, off-target, ignorant and insensitive.

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