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Fate, Destiny and Disability – Ariel Goldberg August 2, 2010

Posted by jewishdisabilityunite in Jewish Thought.
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Disability is a fate. Fate is a word with two common meanings: “the development of events outside of a person’s control, regarded as predetermined” or “the course or inevitable outcome of a person’s life.” Until a generation ago, disability was understood as a fate in both senses of the term. Today, it more widely understood that although the development of a disability is outside of a person’s control, it is not inevitable that it will determine the course, or outcome, of his or her life.

This distinction is one that is very real to me. At the age of sixteen, with no warning, I developed major idiopathic (undiagnosable) chronic fatigue. Five years and countless medical interventions later, with recovery nowhere in sight, I began to despair of ever regaining control of my life. It was then that I began to look for solutions outside of medicine and integrate my religious life into my process of healing. I adopted practices of mindfulness, including Jewish meditation and yoga. To make sense of my situation intellectually I began exploring Torah classics including modern Jewish theology. The more I explored, the clearer it became to me that while I might be fated to live as a person with a disabling medical condition there was no reason why I had to  live as a ‘disabled person’ whose life would be permanently defined by his condition.

One of my greatest discoveries was Rabbi Joseph Dov Soloveitchik’s essay Kol Dodei Dofek (The voice of my beloved is knocking). It taught me that although I cannot control what happens to me, I can choose my reaction, which happens through me. In this way, I initiate my destiny – the other force shaping my life.

Fate and destiny, according to Rabbi Soloveitchik, exist in dialectic, as if the two concepts are in conversation with one another.  He summarizes fate with the slogan “against your will you are born and against your will you shall die.”  The slogan of destiny, on the other hand is “by your freewill you shall live.” “Man is born as an object and dies as an object,” he continues, “but he lives as a subject.”

We are all born as objects of fate. We enter the world affected by objective limitations, including our genetics, familial circumstance, economic status, historical and geopolitical situation, and, for some of us, disability.  When we die, we are affected largely by conditions beyond our control. In between, we live as subjects with freewill.

A dictionary definition of “subject” is “dependent or conditional upon.” A human subject, in Rabbi Soloveitchik’s view, lives a life that is conditional on the exercise of his or her freewill. She may be fated to experience real limitations, whether from a disability or something else, but the ultimate definition of her life is conditional on her exercise of her freewill. She is the shaper of her own destiny through the relationships she has with G-d and people, her creative and professional life, or the attitudes she takes.

Kol Dodei Dofek was written in 1955 as a theological response to the Shoah and the creation of the State of Israel. Its title is taken from one of the most poignant verses of the Song of Songs: “I sleep but my mind is awake. Listen! My beloved is knocking (Kol Dodei Dofek). Open for me, my sister, my beloved, my dove, my perfect one . . . ” Midrashic interpretation of the Song of Songs understands it as an erotic poem about two lovers and, at the same time, as a metaphor for the relationship between G-d and his beloved Jewish people. For Rabbi Soloveitchik, it is also indicative of the existential situation that confronts the Jewish people and individual human beings alike.

Fate, in Rabbi Soloveitchik’s terms, is a knocking, meant to awaken us from our slumber, challenging us to take up “man’s mission in this world”; namely, to turn fate into destiny, from an existence that is passive and influenced to one that is active and influential. It is about moving from “an existence full of compulsion, perplexity and speechlessness into an existence full of will and initiative.” This, according to Rabbi Soloveitchik, is the challenge posed by the Shoah and the birth of the state of Israel. These events call out to the Jewish people to move from being a passive people who let history happen to them to playing an active part in their history’s unfolding.

When fate knocks, our first question is often “why?” Without denying the value of seeking after an answer, Rabbi Soloveitchik stresses that it is a speculative question, for which there can be no satisfactory answer.  For him, the most meaningful response is not to question fate with a “why?” but to ask “what can I do now?”   Rather than question why the Shoa happened, for example, the Jewish people should ask what it can do now to rebuild Jewish life, especially in the context of the State of Israel.

My friends and relatives who have intellectual or physical disabilities have taught me powerful lessons about what it means to be the shaper of my destiny.  Mostly. they have done so their personal examples (which our sages teach is the most powerful way of communicating). These lessons were especially meaningful  for me while I was in the acute phase of my illness. They continue to resonate for me even now when I have largely regained my well-being.

One of the most poignant of these learning experiences unfolded on Simhat Torah two years ago. On that day, a man whom I will call Jonathan Kraus, was honoured with the Hattan Bereshit (the first  aliyah of the new reading cycle, where the first section of the book of Genesis is chanted). This was no ordinary aliyah and Jonathan was no ordinary oleh.

Jonathan has a condition similar to A.L.S. (Lou Ghreig’s disease). He is totally paralyzed and can communicate only by blinking his eyes.  Prior to his illness, Jonathan was an admired figure in the Canadian Jewish community.  He is one of those precious Jews whose life embraces traditional Judaism and, at the same time, the world at large.  Combining outstanding Torah learning with an excellent knowledge of the humanities, dedication to the Jewish people with service to the general community, analytic brilliance, and mentschlichkeit, Jonathan seemed to have it all. Then, without warning, he contracted his illness and, in under a year become completely incapacitated.

By the time he celebrated Simhat Torah in 2008, Jonathan had lost ninety percent of his muscular function. Unable to speak for more then a few seconds or move, except slightly, he avoided doing much of either in public because the effort required was too difficult. When he was wheeled to the bimah for his aliyah, the Torah reader whispered to Jonathan that he need not recite the blessing out loud to fulfil his Halachic obligation as reading it silently was enough. Hearing this, Jonathan gave a slight wave of his hand, as if to say “don’t worry about me.”

He began reciting the Bracha.  A blessing that is usually done in ten seconds took Jonathan over a minute. His words were garbled, almost unrecognizable. But this was one of the most meaningful prayers I have ever heard.

Getting the words out required Jonathan’s total concentration. With his eyes closed, fists clenched, and sweat dripping from his forehead, he willed his way through each syllable of the blessing. The Shema tells us ‘you shall love H-Shem your G-d with all your heart, with all your soul and with all your energy’. Watching Jonathan, I  truly understood what that meant.

His Bracha was Jonathan’s way of affirming publically that no matter what happened to him externally, he would be the master of his destiny. When the Aliyah was over, The Sefer Torah was placed on his lap and then, with his power wheelchair, he lead the procession around the synagogue, beaming at everyone he passed. Jonathan may have been almost completely paralysed but I have never seen anyone so strong.

Living a life that is a response to the question “what can I do?” is, I believe, dependent on having a strong sense of meaning. Viktor Frankl, a pioneering psychotherapist who survived the Holocaust, argued that there are three approaches to discovering meaning: 1) By “creating a work or doing a deed” 2) “By experiencing someone or encountering someone” 3) “By the attitude we take toward unavoidable suffering”.  Quoting the philosopher Fredrich Nietzche, Frankl concludes that ‘he who has a why to live can endure almost any how.”

In reflecting on Frankl’s ideas I recalled another verse from the Song of Songs.  After the lover hears her beloved knocking, she reports “I arose to open for my beloved.” Rashi comments that this “opening” is done “wholeheartedly and with a desiring soul.” If we extend Rabbi Soloveitchik’s metaphor of the knocking of the beloved as being G-d visiting  us with fate, I think we can understand this verse as offering us a metaphor for responding to our fate with total openness.

In the Kaballah, emunah, (faith,) the highest state of consciousness, involves complete openness to whatever G-d may bring into one’s life. When fate knocks, perhaps in the form of a disability, a person with emunah will embrace the new situation and open themselves to all of its possibilities for meaning.

In her own way, my aunt Pnina has modelled this kind of openness. A quadriplegic  (paralysed from the neck down), due to multiple sclerosis, she has for a decade been  unable to eat, move or perform bodily function without assistance from others.  At the same time, Pnina has embraced the experience of having a disability wholeheartedly and out of it created a meaningful life.

A people person with a gift for organizing, Pnina has become an important disability rights advocate, empowering people with disabilities and those without to think more inclusively.  By choosing to embrace the possibilities for meaning offered by her disability, my aunt has been able to transcend much of the pain that is also present. Her life demonstrates Viktor Frankl’s equation, S = P – M.  Suffering is the presence of pain in the absence of meaning. (Alternatively, pain could be substituted with the words “limitation” or “disability”). Everyday, Pnina awakens in the morning and faces her frustrating limitations anew. But because she has meaningful work to do, these pains are not the be-all of her existence. Enduring them is a means to a greater end.

Living or not living with physical or intellectual limitations is not an either / or. We are all fated to experiences limitations of one sort or another, especially death. The question is not one of “if” but “how” and “when”. People with disabilities can teach the rest of society about this reality. Their examples can challenge others to respond meaningfully when fate knocks.

People who are not disabled and do not encounter the naked reality of their limitations on a daily basis often have the option of making the same mistake as the narrator in the Song of Songs. They can delay arising when they hear the knock until it is too late. (When the lover opens the door she discovers that   “My beloved had hidden and was gone . . .  I sought him but found him not. I called to him, but he did not answer me.”)  When they experience temporary setbacks which highlight their limitations these people can let the experiences pass by without reflecting on how these aspects of their fate can be transformed into a meaningful destiny. An existence that is lived in partial denial of reality is not, to my mind, one that fully embraces the blessing of life. A lack of awareness of one’s limitations is itself a powerful limitation reducing a person’s capacity for a destiny which includes real joy, love, faith and creativity.

People with disabilities are often recipients of help from those without disabilities in meeting their physical or intellectual needs.  But the reverse is also true, I believe.  People with disabilities have much to offer people without them when it comes to meeting spiritual needs.  Insuring that people with disabilities and people without them can be integrated in the Jewish community is not about Hessed.  We are all blessed when we live together.

Ariel Goldberg grew up in Ottawa, Canada, and is currently a student at Yeshivat Hamivtar.

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Comments»

1. Tamara - August 2, 2010

I feel like we’re all equally challenged and equally able to search for meaning and transcend our own limitations, whether they be corporeal or spiritual. Perhaps physical disintegration provides a sense of urgency, but it doesn’t make it any easier to do so.


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