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, arent we taught from an early age
not to stare at cripples? Isnt it embarrassing to face somebody like
that, whose misfortunes are that much greater than your own?
I didnt know, then, how this woman was going to turn my
notion of misfortune inside out; I didnt 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!
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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 Miriams hands, arms, and lungs had been severely
diminished by the polio she contracted at the age of 3, she cant 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 drivers 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 couldnt. 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 peoples negligence, she
didnt say. She had endured the wait, apparently, without banging on the
windows and shattering them; without screaming for help; without going out of
The second driver had eventually arrived, and the bus continued
l l l
It emerged in conversation that Asher directs a municipal
program that teaches disabled people to use public transportation, and that
Miriams articles are published with some regularity in national
womens 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 cant 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 childrens 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.
Thats 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
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
We didnt 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. Isnt 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 thats the difference, and on account
of that, theyre more developed intellectually and emotionally?
True, she conceded. I cant go over
across the room and grab them and march them off to the bedroom. I have to rely
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, hes 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
lifes mundane demands less with physical agility than with ingenuity and
will power; parents who cant afford the luxury of losing patience over
lifes 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 Ashers never having seen his wife must only
enhance his consciousness of all the nuances of meaning contained in her voice.
Wouldnt 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 couldnt 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 Id
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
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 Im 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 mothers and fathers 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
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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 souls 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 peoples eyes. In her and her husbands 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 Ive ever been able to ask what its like to
be disabled -- I suggested tentatively, Maybe youve had to
extinguish so much of your egotistical self, in order to get along in the
world, that thats why your singing voice is so beautiful. I paused,
scared that once again she would think I wasnt seeing her realistically.
Dont 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
She took this in for a moment. Purified water? There
was a pause. Sarah, please. Im not an angel. Im as
egotistical as anyone.
I felt curiously relieved. Maybe she wasnt so different
from me, after all.
And yet -- Miriam doesnt 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 Im in the midst of one of my own
lifes various difficulties, I think of them. Is the hardship Im
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 its through dealing with what
I dont have that Im compelled to become the person Im
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 worlds
basic truths: Life comes with hardships.
None of us is exempt, and it is the difficulties that can force
us to fly.