W: 10/9/02

Work Diary, 10/9/02

Once, when I was eleven, I stumbled off of a bus in Brighton, England
and was faced with an entire line of women who looked exactly the same.
Each wore a long, dark coat, and they were arranged at the bus stop
according to height - from tallest to shortest. Their hair was clipped
short and the chunky brown shoes on their feet screamed
"INSTITUTIONALIZED." A whole row of doughy, bland faces with
rabbit-like eyes peered out from under black felt berets; then the
women boarded the bus, their hands linked to form a waddling chain. The
only sounds they made were the scuff of their shoes and the "huhh huhh
huhh" of the last and shortest woman, a happy caboose who waved her
free hand behind her like she was swatting flies.

"Mongoloids," tsked a woman in my group, who'd spent the entire trip
with her purse in a death grip lest some crazy European make off with
it.

For me, age eleven, the term Mongoloid was an insult: "You mongoloid!
Give me back my kite!" Yet it was clear to me that these women were
altogether something different. Later I would discover they had Down's
Syndrome - the term "Mongoloid" being an outdated description of the
facial features this particular condition brings about - but back then
all I knew is that they made me oddly uncomfortable. It wasn't so much
their xeroxed appearance but that blankness in their eyes, as if even
the sun's light became trapped in the murkiness and couldn't find its
way out. The women reminded me of Kindergartners on the first day of
school, nervously confident in the security of their queue.

Unlike Kindergartners, however, theirs was a spooky kind of charm -
you'd rush to save them while keeping your distance.

When I moved to Colorado, I met my uncle's oldest son, who has severe
cerebral palsy. He cannot walk, use the toilet by himself, or do any
manner of things that most of us take for granted. His speech is
limited; it's rare that my relatives allow him to finish a sentence. As
a boy, he would lay on the floor, sometimes moving himself along by the
elbows to a different room. His arrival often meant the room would
empty, though he appeared entertained most of the time. Now, as a grown
man, he lives in a home for the handicapped, a decision his parents
made after agonizing over what it would mean for their son and how it
would affect them as parents. I believe they made the right choice, and
I hope my cousin's days are not spent on the floor, waiting for
passerby to lift him into his chair or turn on the television.

As a teenager, I said horrible things about my cousin, describing his
slug-like meanderings in great detail (much to the delight of my
equally vicious friends). I resented holiday dinners, during which the
adults forewent conversation so they could encourage him to try some
turkey, or a bit of gravy. One Christmas, his arm spasmed in a
gelatinous arc over the table, knocking a glass of wine onto a sweater
I'd waited months to get. It disgusted me that my aunt or uncle would
have to take their post-pubescent son into the bathroom.

Can I pat myself on the back because I've evolved in my views
concerning my cousin and the handicapped? I'm not so sure. Last month,
while having lunch with a co-worker in the food court of a nearby mall,
I spotted a table of handicapped adults. One dark head bobbed at the
head of the table, back and forth, before the entire person rolled into
view. It was my cousin, whom I hadn't seen since Christmas. His sudden
appearance made my stomach burn and my knees weak. I felt as if I'd
just witnessed a car crash.

Why? It was only my cousin, moving to the other end of the table so
that another man, presumably a fellow resident of the home, could feed
him. He seemed happy, his trademark twitch going full blast as he
smiled. But I sat there frozen, wondering if he'd seen me, which gave
way to wondering if I should get up and walk over to him. In the end I
didn't, telling myself that I might confuse my cousin or - even worse -
that he might not recognize me and I'd appear a fool. Ah, Vanity, dost
thou ever take a friggin' break?

I did point my cousin out to my co-worker, however, who turned back to
me and said, "Really? No way! You are going straight to hell, you are
so bad." That last may indeed be true, but I did convince him that my
actual blood-relative was sitting in the group, which ranged from the
profoundly to the mildly handicapped. My co-worker was clearly tense,
something that irked me at first. But, then, he was merely mirroring my
own emotions. Why should I be mad at him?

Coincidentally, a different co-worker at a different lunch brought up a
television program he'd watched not too long ago. The program discussed
the old and new technological breakthroughs that allow doctors to
diagnose a fetus for certain syndromes and diseases, many of which can
result in a handicapped child. Naturally, the question arose: "If you
knew your baby would be disabled after its birth, would you
abort?"

I have strong views about abortion, none of which make a bit of
difference. I've never been convinced by the arguments that males
should have a say in a woman's choice about her body, even when it's
the biological father yelling "yay" or "nay." Also, my cousin's
disability resulted from brain damage during birth; he would not have
been a candidate for early termination.

"If you knew your baby would be disabled after its birth, would you
abort?" asked my co-worker. As if reading my mind, he added, "If, like,
you were the woman carrying the baby?"

And for the life of me, I couldn't come up with an answer.