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A Handicapped Look at Disability
by Sarah Shapiro
An evening's encounter with a handicapped couple overturns
misconceptions that have crippled one woman over a lifetime.


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?"

A woman was smiling up at me, and I recalled vaguely now having noticed
a hatted lady in a wheelchair coming towards me on the sidewalk. Later
on it would come back to me how instinctively I had averted my eyes from
her. 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 named Miriam 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!"

A SHABBAT TO REMEMBER

That night, upon entering what seemed at first sight a small, cramped
apartment, I wondered how Miriam and her family could live with so many
papers and books stacked all around.

Later on I would learn that the muscle-function of Miriam's hands, arms,
and lungs had been so drastically diminished by polio at the age of
three that she can't afford to spend her limited physical strength and
energy on unnecessary, demanding activities such as putting away what
she'll soon need to take out again. She's a writer, and her husband,
Daniel, 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'd each been doing that afternoon. Suffice it to say
that my own afternoon is long forgotten. Hers, however, I do recall.

Foregoing the expense of a taxi for a trip downtown to do an errand,
Miriam had opted to go by bus. For some unknown reason, however, the bus
driver had had to pull over in the middle of his route, whereupon he
announced 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 to only get on again in her wheelchair --
asked if she could stay and await the second driver.

A few minutes turned into 20, 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 imprisonment. I wanted to ask if she'd had
anything to read. But I couldn't ask -- I was still pretending to be
blind, and sought to conceal my astonishment, as well as some other
emotion, like dread, or fear, that I still can't identity.

If she had seethed at the unfairness, the inconvenience, the boredom,
and the waste of her precious time, if she'd felt maddeningly trapped,
if she'd 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.

MAKING IT DESPITE THE ODDS

It emerged in conversation that Daniel directs a municipal program that
teaches disabled people how to use public transportation, and that
Miriam's articles are published with some regularity in women's
magazines such as McCall's and Family Circle.

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, in any case, child-raising would
have been out of the question for them.

A woman who can only stand, precariously balanced, a few minutes at a
time -- such a woman, they informed her, can't responsibly consider
bringing children into the world. A woman who has to spend a fair amount
of time lying down, to regularly recoup her strength, and whose
atrophied hands and arms can't handle the usual maternal duties -- such
a woman would be unwise to insist on motherhood.

Daniel and Miriam have two children, a boy of five and a girl, seven,
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 gently. "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 thought normal."

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

UNUSUALLY WELL-ADJUSTED CHILDREN

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, and 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, that 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, even when
he was issuing reprimands. He seemed constantly buoyed by amusement at
their antics, astute remarks, their irrepressible liveliness.

A thought kept eating away at me: I consider myself a loving parent, and
know that my children would agree, but was my appreciation for the sheer
fact of their existence as palpable as the parental affection bestowed
upon these two?

Precisely on account of his limitations, Daniel 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, Daniel 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 Daniel, functioning together, simply approximated -- as far as
practical needs are concerned -- two sighted, mobile parents.
Nonetheless, to my mind, their parenting was greater than the sum of its
parts.

TAKING NOTHING FOR GRANTED

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 easily
afford the luxury of losing patience over life's stumbling blocks?

Equipped as I am, thank God, with a normal body that takes me
unthinkingly and quickly here, there, and everywhere, that has me
running in and out of the kitchen 20 times during any meal -- how often
is my attention undivided?

As far as marriage was concerned, I imagined that the fact of Daniel's
never having seen his wife only enhanced his consciousness of all the
nuances of meaning contained in her voice.

Wouldn't any woman like that kind of attention paid to her words?

I was getting jealous, jealous of these people who I had initially
assumed were lacking so much. They were lacking, 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 God.

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," I replied. "If you insist."

AN EXTRAORDINARY ENVIRONMENT OF LOVE

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. Daniel would say that I'm
viewing their disability as some sort of poetic metaphor. He would much
prefer to be viewed as people whose disability is in no way their
primary characteristic.

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 Daniel first and foremost, at least at the
outset, through the lens of disability.

By the Shabbat 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 that 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.
And second, that to the extent that we identify with that which is
eternal and intangible in ourselves -- our divine images -- to that
extent are we human, and truly living our lives.

A few years ago I read an article about Andre Dubus, a writer, now
deceased, who had lost the use of both legs in an accident; he had
stopped to help a stranded motorist and gotten hit by a passing car. He
said: "Quads [quadriplegics] want to be paras {paraplegics.] Paras want
to be normals. And normals want to be Jane Fonda."

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 three 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's no good alternative other than to rise above it.

A SPIRIT THAT TRIUMPHS OVER THE PHYSICAL

Months later, I finally dared share with her some of my real questions.
It was the first time I've ever been able to ask anyone what it's like
to be severely disabled.

"Maybe you've had to extinguish so much of your egotistical self," I
suggested tentatively, "in order to get along in the world -- that's why
your singing voice is so beautiful." I paused, scared that once again
she'd 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 an apartment that at first had seemed small
and cramped, she herself is neither.

Together these two have built a basically 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 Shabbat morning. Even though for Daniel, the world's
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 try to think of them. Is the hardship I'm
experiencing overwhelming? Then this is my chance to acquire some of the
nobility and dignity they have developed.

WHAT WE LACK BUILDS US

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.

May we appreciate, and put to use, whatever pains are sent our way, and
thereby give our atrophied spiritual limbs their necessary exercise.

Would I ever trade places with Miriam? Never, not willingly. I'd choose
a normally functioning body over enlightenment any day.

But at least let me accept one of this world's basic truths -- life
comes with hardships. None of us is exempt, and it's the limitations
that can make us fly.



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Author Biography:
Sarah Shapiro is the author of Growing With My Children: A Jewish
Mother's Diary; Don't You Know It's a Perfect World?; the Our Lives
anthologies; and most recently "A Gift Passed Along: A Woman Looks at
the World Around Her," published recently by Artscroll. She writes
regularly for publications in Israel and the United States, and teaches
writing workshops in Jerusalem.


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