-- Chapter from A Gift Passed Along -- Chapter Three: A Handicapped Look at Disability Chapter from A Gift Passed Along -- Chapter Three: A Handicapped Look at Disability
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  Chapter Three: A Handicapped Look at Disability from
A Gift Passed Along
A woman looks at the world around her

By Sarah Shapiro 

Other Available Chapters
Chapter Fifteen: Remembering Bracha 
Chapter Twenty-seven: Why Is This Child Different? 

Chapter Three: A Handicapped Look at Disability

I was on 72nd Street, peering into the window of what had once been a kosher restaurant, when a stranger in a motorized wheelchair pulled up alongside and greeted me. “Hello? Can I help you?”

She was smiling up at me, and I recalled vaguely now having noticed a hatted woman in a wheelchair, coming towards me along the sidewalk. Later on it would come back to me: how instinctively I had averted my eyes from Miriam. After all, aren’t we taught from an early age not to stare at cripples? Isn’t it embarrassing to face somebody like that, whose misfortunes are that much greater than your own?

I didn’t know, then, how this woman was going to turn my notion of misfortune inside out; I didn’t know that if insights acquired suddenly would only stay put, I could have rid myself in one evening of misconceptions that have crippled me over a lifetime.

I said I was looking for Famous Dairy, and she told me it had gone out of business years ago. “Do you have a place for dinner tonight?” she asked, when I told her I was visiting Manhattan by myself. It was late Friday afternoon. Shabbat would start in a few hours.

“We live right around the corner, “ said the woman. “Come to us!”

l l l

That night, upon entering what seemed at first sight a small, cramped apartment, I wondered how these people could live with so many papers and books stacked all around. Later on I would learn that since the muscle-function of Miriam’s hands, arms, and lungs had been severely diminished by the polio she contracted at the age of 3, she can’t afford to expend her limited physical strength and energy on unnecessary, demanding activities such as putting away what she will soon need to take out again. She is a writer, and her husband, Asher, has been blind from birth. The house is organized mostly for purposes of access.

As Miriam prepared her candles and mine for lighting, our conversation turned to what we had each been doing that afternoon. Suffice it to say that my own afternoon is long forgotten. Hers, however, I well remember.

Forgoing the expense of a taxi for a trip downtown to do an errand, Miriam had opted to go by bus. For some unknown reason, the bus driver had had to pull over in the middle of his route, announcing that another driver would arrive shortly to take his place. Those passengers who so desired could get transfers and disembark.

The bus emptied out. Miriam, for whom a brief wait was preferable to the trouble of getting off and on, and off again, asked if she could stay and await the second driver.

A few minutes turned into twenty, a half-hour into an hour and a half. She was alone on board. The doors were closed on the hot September day. The mechanism on the door for lowering wheelchairs to the street had to await the second driver’s arrival.

I wanted to ask how she had endured the frustration, the exasperation, the stifling air, the sense of imprisonment. I wanted to ask if she had had anything to read. I couldn’t. I was still pretending to be blind myself, and sought to conceal my horror at her predicament. If she had seethed at the unfairness, the inconvenience, the boredom, and the waste of her precious time, if she had felt maddeningly trapped, if she had gotten desperate at her helplessness, and infuriated by people’s negligence, she didn’t say. She had endured the wait, apparently, without banging on the windows and shattering them; without screaming for help; without going out of her mind.

The second driver had eventually arrived, and the bus continued on.

l l l

It emerged in conversation that Asher directs a municipal program that teaches disabled people to use public transportation, and that Miriam’s articles are published with some regularity in national women’s magazines. Ten years earlier, doctors had told them that due to problems unrelated to either of their disabilities, having children would be impossible. Some of the doctors had advised that child-raising would have been out of the question in any case: A woman who can only stand, precariously balanced, a few minutes at a time -- such a woman, they informed her, cannot responsibly consider bringing children into the world. A woman who has to spend a fair amount of time each day lying down, to recoup her strength, and whose atrophied hands and arms can’t handle the usual maternal duties -- such a woman, she was told, would in any case be unwise to insist on motherhood.

Asher and Miriam have two children, a boy of 5 and a girl, 7, and these children’s demeanor quickly aroused some self-doubts on my part about my own mothering. I found myself summoning up the image of my own children at that age, trying to remember if they had been equally happy and uninhibited. These two definitely seemed at once more whimsical and more grounded than most, yet at the same time, perceptive and responsible beyond their years. I leaned over to murmur a comment to that effect to Miriam.

“That’s a stereotyped image people have of the children of handicapped people,” Miriam replied softly. “People think that the children of disabled people are in some ways deprived of their childhoods,” she said, “by having to be helpful more than is considered normal.”

I was embarrassed. Here I had thought she would be flattered, and instead, found I had come out with what evidently was an offensive cliché. Suddenly I got my first inkling, without being able to articulate it as yet, of a strange dichotomy in my reactions to all this: on one hand, there was my horror at these severe disabilities, and a need to ignore them; on the other, a tendency to perceive their difficulty as something enviably meaningful.

We didn’t know each other yet, so I was reluctant to press the point. But I did inquire how she could deny that her children were unusually mature for their age, yet obviously not deprived of childhood, either. “Isn’t it so,” I asked, “that when you want them to understand something, or obey you, you have to converse with them instead of just forcing them to comply? Maybe that’s the difference, and on account of that, they’re more developed intellectually and emotionally?”

“True,” she conceded. “I can’t go over across the room and grab them and march them off to the bedroom. I have to rely on words.”

Her husband spoke to the children attentively in a low, measured voice, as well, and the pleasure he was taking in them was palpable: an underlying enjoyment that was still evident when he was issuing reprimands. He seemed constantly buoyed by amusement at their antics, astute remarks, their irrepressible liveliness. Again, it was eating away at me: I consider myself a loving parent, and know that my children would agree, but is my appreciation for the sheer fact of their existence as palpable to them as the parental affection bestowed upon these two? Precisely on account of his limitations, Asher has to tune in completely to everything they say with the most focused manner of alertness, whereas so much of the time, the world draws me away.

I suspect now that had I expressed a comment such as this, Asher might have retorted wryly that like most of us, he’s just on his best parental behavior when guests are around.

As the hours went by that Friday night, it became apparent that Miriam and Asher, functioning, together, approximated -- for all practical purposes -- two sighted, mobile parents. Nonetheless, to my mind, their parenting was greater than the sum of its parts. What do those children learn by having a mother and father for whom each and every trivial deed is a challenge, minute by minute; parents who are compelled to negotiate all of life’s mundane demands less with physical agility than with ingenuity and will power; parents who can’t afford the luxury of losing patience over life’s stumbling blocks? Equipped as I am, thank G-d, with a normal body that takes me unthinkingly and quickly here, there, and everywhere, that has me running in and out of the kitchen twenty times during any meal -- how often is my attention undivided? And as far as husband and wife were concerned, I imagined that the fact of Asher’s never having seen his wife must only enhance his consciousness of all the nuances of meaning contained in her voice. Wouldn’t most women say they want to be listened to that closely? I was getting jealous, jealous of these people who I had initially assumed were lacking so much. They werelacking, it couldn’t be denied, much that American culture regards as essential to happiness. But two things they had obviously cultivated in abundance: love, and the belief that all events have their source in G-d.

When it came time for Shabbos songs and the four of them sat singing together, I ruminated dolefully.

Months later, I would tell Miriam that this is what I’d been thinking about that first night of our acquaintance, and she smiled indulgently. She said that they and their kids experience the clashes and conflicts of any family.

“All right, dear” I replied. “If you insist.”

But to my mind, there was no denying the extraordinary environment of love prevailing in their home, one that must have arisen and grown out of the family members’ ultra high level of mutual sensitivity. Miriam would say that such idealization of their lives is the flip side of pity. Either perspective is condescending. Asher would say, as he once did in an e-mail, that I’m viewing their disability as some sort of poetic metaphor. He would much rather be viewed as a person whose primary characteristic is not disability.

And I would say that on account of fear, and the embarrassed awkwardness about not knowing how to react, and out of a guilty sense of privilege about being sighted and mobile in their presence, most people are bound to perceive Miriam and Asher first and foremost, at least at the outset, through the lens of their disability.

By the Shabbos candlelight around their table, as the children listened to their mother’s and father’s harmonizing voices so keenly and subtly attuned one to the other, it seemed to me indisputable that this boy and girl could not help but absorb two truths I would most wish my own children to carry out of childhood: first, that love can transcend physical limitations. Secondly, that to whatever extent we identify with that which is eternal and intangible in ourselves, our divine images, to that extent are we human, and truly alive.

l l l

A few years ago I read an article about someone who stopped one night to help a stranded motorist and got hit by a passing car. He lost the use of both legs. He quoted another quadreplegic as having said something along the lines of: “Quads [quadriplegics] want to be paras [paraplegics.] Paras want to be normals. And normals want to look like movie stars.”

How thorough is our faith in bodily wholeness! How desperately we channel the human soul’s natural drive to develop, to reach greatness, into the quest for physical perfection! Miriam, from age 3 on, had no choice but to develop a self-concept based on something other than her external self, and a self-image derived from something other than the imagined reflections of her face in other people’s eyes. In her and her husband’s home, where the physical level of existence could so easily exert a tyrannical grip over their lives, there is no good alternative other than to rise above it.

When I finally dared share some of my real questions with Miriam -- the first person whom I’ve ever been able to ask what it’s like to be disabled -- I suggested tentatively, “Maybe you’ve had to extinguish so much of your egotistical self, in order to get along in the world, that that’s why your singing voice is so beautiful.” I paused, scared that once again she would think I wasn’t seeing her realistically.

“Don’t think,” she said, “that my spirit always triumphs over the physical.”

“But always having to depend on people for help,” I continued, afraid of saying something ridiculous, “and the constant insult of having people look at you as some sort of separate species of human being -- having to endure that humiliation --’’ I could sense her waiting indulgently. “So what remains of your personality is sort of like purified water.”

She took this in for a moment. “Purified water?” There was a pause. “Sarah, please. I’m not an angel. I’m as egotistical as anyone.”

I felt curiously relieved. Maybe she wasn’t so different from me, after all.

And yet -- Miriam doesn’t hear her own voice as she sings at their table in the flickering candlelight. In that seemingly small, cramped apartment, she herself is neither small nor cramped. Together the two of them have built an essentially joyous existence for themselves, even though for Miriam taking a breath is hard, and sitting up is hard, and standing, and talking on the phone, and getting into the elevator and in and out of bed; even though brushing her teeth is hard, and picking up a fork, and typing on her computer, and getting to the synagogue on Shabbos morning.

Even though for Asher, the world is sheathed in what the rest of us can only imagine as darkness.

Sometimes nowadays, when I’m in the midst of one of my own life’s various difficulties, I think of them. Is the hardship I’m experiencing overwhelming? Then this is my chance to acquire some of the nobility and dignity those two have developed. My husband once told me that one of the daily blessings recited in the morning prayers, “Blessed are You Who has provided me with all my needs,” can be interpreted as follows: Thank You for providing me with all that I need -- in other words, with all that I lack. For it’s through dealing with what I don’t have that I’m compelled to become the person I’m meant to be.

Would I ever trade places with Miriam? Never, not willingly. I would choose a normally functioning body over enlightenment any day. But I can try to put to good use whatever pains and limitations are sent my way, thereby providing my atrophied spiritual limbs with their necessary exercise.

At the very least, maybe I can accept one of this world’s basic truths: Life comes with hardships.

None of us is exempt, and it is the difficulties that can force us to fly.

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