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FIRST PERSON: KARL TARO GREENFELD
My
Brother
My autistic brother Noah and I once played together. He
was two, and I was a year older. We wrestled, and I tickled
him. He responded in a high-pitched giggle, halfway between
a baby's gurgle and a child's laughter. I can't remember ever
playing with him again. Noah stayed forever a baby, profoundly
retarded, always dependent, never very communicative. And
my role changed, much too early, from playmate to steward.
There was barely any sibling rivalry. There were no battles
to be fought. He would always be the center of attention.
I was treated as a sort of supporting player. Because my father
had written a trilogy of books about our family with Noah
as the title character (starting with "A Child Called Noah,"
1972), I would often be asked what it was like having an autistic
brother. I never figured out how to respond. The answer I
always gave that I had never known any other life or
any other brother seemed cryptic and somehow unsatisfactory.
But that remains the only answer I can give. Noah, who can't
speak, dress or go to the bathroom completely unassisted,
will always be the center of our family. He never earned that
role; his needs dictated it. I wasn't consciously resentful
of this as a child. There was no more reason to be angry about
this than there was about the rigid laws of basic arithmetic.
I accepted the fact that Noah and his problems could fill
a battleship of parental duty and obligation, leaving my mother
and father too spent to worry about the more banal problems
of their normal son. But at some point in my early teens,
in the confusing years of adolescence, I stopped having friends
over. Noah's condition dictated what we ate and when we slept
and to a great degree how we lived. We never had fancy furniture
because he chewed on the couch cushions and spit on the carpets.
He would pull apart anything more complicated than a pencil.
I was ashamed of our home and family. Already marked as different
by virtue of being Asian American in a predominantly white
community, I came to see Noah as an additional stigmatizing
mark.
My father used to say every family has a skeleton in its
closet. Only ours was out in the open. I don't even remember
if I talked about Noah in school. My friends knew about him,
but after the first few questions, there wasn't much to say.
Noah didn't change. Autism is a condition, I knew from close
up, for which there are no miraculous cures. So he always
stayed Noah. This kid who shared the same black hair and brown
eyes as I had but couldn't talk and wanted to be left alone.
So what was there to say about Noah? He was my brother who
was never going to grow up.
Noah is 35 now and has been living in institutions since
he was 18. My parents visit him every weekend at the state-run
Fairview Developmental Center in Costa Mesa, Calif. I go whenever
I am in town. (Currently I live in Hong Kong.) We bring Noah
his favorite foods: sushi, fresh fruit and Japanese crackers
and take him for a walk or a ride. Sometimes he lashes out
at me. Spitting. Scratching. Pulling hair. But he knows me;
I can tell by the wary squint he gives me. We're brothers,
after all.
My parents are now in their 70s. My father underwent open-heart
surgery a few years ago. Eventually, the responsibility for
Noah will fall solely upon me. I imagine I may have to move
my own family back to California to visit him every weekend,
so that those caring for him will know that despite Noah's
temper tantrums and violent outbursts, he is loved; he is
a brother and part of a family. He is still the center of
my life. My travels, from Los Angeles to New York City to
Paris to Tokyo to Hong Kong, will always bring me back to
him. I don't know any other life. I have no other brother.
Greenfeld is the
editor of Time Asia
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