Riding the Bus With My Sister: A True Life Journey (20 page)

I struggle to speak with kindness, but it's getting increasingly difficult. Why can she not learn the simplest things? Is it that she can't, or that she
won't?
Does the problem lie entirely in her disability?

And—while I'm railing on—why doesn't she notice that anyone else has needs? Lately, she's entered a phase where she won't listen to other bus riders, not even her most adored drivers, when they talk about anything not bus-related. Me, too: I always arrive in town with my own food, knowing it has never occurred to her this entire time to stock even a single slice of bread for my visits. I ask for nothing except to be part of her life, accept her
bawd
expression if I dare mention anything about myself, and affirm and admire and truly
like
her. Yet she still resents giving me any help at all, even in carrying my bedding to the car.

I don't get it. Especially because Beth is smart and acutely aware. She can also be outgoing and generous; she's started joining the retirees in her high-rise for Tuesday-night Bingo, and she routinely purchases and hand-delivers postage stamps to drivers with utility bills to pay. But every time she complains about the nasty drivers, sometimes even attempting to incite impartial drivers to war against their crustier colleagues, every time she pays no heed to a drowsy shift worker who has asked her to lower her voice, and every time she brags about how she barged into the drivers' room even though one of her enemies was there on his break, a feral feeling rears up within me, and it's all I can do to hold back my words.

How much is Beth, and how much is Beth's brain?

What
is
mental retardation, anyway?

I call Olivia at her office. We have been doing this every month; she brings me up to date on Beth's medical developments, I acquaint her with events on the buses. Sometimes, we allow ourselves to slide off course. We talk about long-beached romances; we offer wisdom from books. She refers to the Bible and Edgar Cayce, I talk about Toni Morrison and Benjamin Franklin.

This day, two beats before our goodbye, I try to sound casual: "Oh, by the way, what, uh, did you think mental retardation was before, you know, you studied it for your career?"

She says, "People who couldn't do what I could do, because they were born that way."

"When did you understand ... what did you learn when you entered the field?"

"Well, one of my big moments came during my training, when I saw this movie about babies with a type of MR. Their brain wants to process information about learning to crawl, but it doesn't coincide with how their body responds. Eventually it happens, but it takes longer than with other babies. That was when I saw that what I'd need to deal with these people is patience, patience, and
more
patience."

Good, I think. Perhaps she'll understand the return of my negative feelings and help me reach a calmer place. "Is that ... what you find most ...
difficult
about working with Beth?"

She thinks for a minute. "The worst part of it is the way the people
around
Beth deal with her: talking about her like she's not there, looking down their noses at her. I deal with this every day in my job, and not when I'm hearing about strangers, but sometimes families, too. One person I know was visiting her family, and became talkative during dinner. When the family got fed up, instead of saying, 'Can you give someone else a chance to speak?' someone actually said, 'Maybe we should stick a pacifier in your mouth,' and everyone laughed. It's so demeaning! People treat their pets with more respect.

"I don't have any trouble with Beth," she concludes. "I think she's a joy to work with."

"Me, too," I say, half-truthfully, and change my mind about asking my question. I hang up in a swirl of relief and shame. I have lived with mental retardation for thirty-nine years, and I have never asked anyone what it really is. In the interest of raising four equal children, our parents almost never uttered the words except in private and never added books about mental retardation to our shelves. In fact, I'd read about this disability only in works of fiction—
Flowers for Algernon, Of Mice and Men,
and
The Good Earth
when I was younger; when I was older,
The Sound and the Fury
and the Flannery O'Connor short story "The Life You Save May Be Your Own." And none of them answered the questions that I hadn't thought to ask. But why should it have occurred to me to do so? Mental retardation had just always been my sister, and my sister had always been it.

I am glad Olivia had to get off; I am not prepared for her to see my ignorance.

Then, on my next visit, which falls right after Beth's birthday, when we are now officially "twins," I drag through a day that sits especially heavy in my heart. On seventeen buses, over twelve hours, Beth's talk brims with spite about the brutes she encounters in the drivers' room. Her babble is unceasing, booming, and unvarying from bus to bus. People glare. An elderly man with a cane, who evidently assumes I sat beside Beth without knowing what I was getting into, leans close to me and says, "She sure does run her mouth, that one." While we're waiting at the terminal for a bus, I'm accosted on the sidewalk by a mother and her teenage daughter. The mother, who grasps immediately that I'm Beth's sister, ignores Beth while shouting at me that I need to control her: she picks fights with them on the bus, I'm told, as she's jealous when they speak with the drivers, and plays her radio because she knows it irritates them. Beth shrugs. Late in our day, when I suggest that she at least speak more softly on the bus, she says to driver after driver, "Rachel thinks I'm talking too loud. The last driver didn't think I was talking too loud, he sez I should do what I want, and thaz right, I don't talk too loud, do you think I talk too loud, do you, do you?" I tell myself to let it roll off me, that it's none of my business if she's as loud as a foghorn. I don't want to intrude like her nosy coriders. Live and let live. Right?

Then that evening, as we rest on her love seat watching
Diff'rent Strokes,
my head splitting despite my relief that I finally got to the end of this day, she gives me her slyest smile and says, "I'm gonna tell that fat girl off tomorrow. I'm gonna tell her like it
is.
"

I look at her. "Who are you talking about?"

"Just
somebody.
She wants everyone to treat her special, she wants the bus to leave her at her
house
instead of the
stop,
and the drivers are sick of it, and now she wants my
seat,
and I told her she couldn't have it, and she
yelled
at me. So I'm gonna tell her off. Now you
know.
"

"What do you mean, tell her off?"

She laughs. "I'm gonna tell her that she stinks!"

In a different mood I might laugh, too, then calmly discuss civility. But I'm already too worn out and perturbed to control myself, and my feelings suddenly break loose. "Beth, why don't you try being nicer to people?!"

"I'm nice to people who are nice to
me.
"

"Telling people they stink isn't being nice."

"It don't matter."

"It
does
matter. You don't need to be nasty to anyone."

"I don't
care.
"

I take a few deep breaths; I know it's just a petty conflict. But it's at least the tenth one today, and dammit, I'm not just another busybody passenger, I'm her sister, and the bus isn't a military theater, it's just a city bus and she's just another rider, and—and—and I just can't stand it anymore! "Why can't you ever notice when you upset people!" My voice is rising; I can hear my angry, righteous tone. I look away, pretending I don't want an answer, telling myself that everyone has feelings like Beth's sometimes.
But,
the dark voice retorts,
most of us manage to keep them to ourselves.
I peer back at Beth and force my words into an approximation of composure. "Beth. Really. You could just keep your mouth shut."

"She'll get over it."

"But think about what Jacob says: do unto others. You could just share your seat."

"Iz not her seat."

"It's not
yours,
either."

"And she
does
stink. And I can say what I want. Iz a free country. Louie the driver sez so, and that new driver, Rita—"

"Sure, you can say what you want. But you don't have to say things that hurt."

"I don't have to be polite to
her.
"

"Look, I don't have to be nice to everybody, but I try, even when people act badly, because there's no need to make bad situations worse. And if I hurt people's feelings by accident, I apologize."

"I'm not gonna apologize."

"That's what we do when we hurt people."

"Thaz what
you
do."

"But other people have feelings, right?"

"I don't
know.
"

"What do you mean, you don't
know
!" I explode. "Other people matter! We can at least try to get along with each other!" I flee into her bedroom.

Out in the living room, she turns her television up higher. I stay where I am, steaming at her window, clenching my fists. I will not go back out. I cannot. I breathe hard at my reflection, and past it, to the valley of row houses, their chimneys spiking up like fangs. I glance at her desktop and its feast of stickers waiting to decorate envelopes—teddy bears in tutus and smiling hearts and Beauty and the Beast—and I hate them all. I hate her Donald Duck sheets. I hate the Care Bear Christmas ornaments in the bathroom. This year is spreading out endlessly. Why bother? Why not just give up? I should just throw myself in my car and go home.

But she's my sister, I remind myself, closing my eyes, and under all this anger, I do love her. And I promised her a year. Stupid! A stupid promise! I am not up to this task at all.

I gaze out to the horizon, thinking, once again, How much is Beth, and how much is Beth's brain? Maybe it's time that I tried to find out.

Late one afternoon at home, seven hours before I will be leaving our annual twinness behind to turn forty, I shut off my fax machine, turn off the phone volume, close the computer file of my latest writing project, boil water for peppermint tea, and go online. Of course, I encounter many sites related to mental retardation. I wend my way through them, so caught up that I miss the sun's departure and the day passing into night. In the dark hours, I learn at last about my sister.

First I come upon The Arc of the United States at
thearc.org
, one of the leading advocacy organizations for people with mental retardation. I discover that 2.5 to 3 percent of the American population has mental retardation, which, based on the 1990 Census, means between 6.2 and 7.5 million people. That's a lot of Beths out there—twenty-five times as many people as those who are blind. One out of ten American families has intimate experience with mental retardation. That's a lot of me's.

I learn that my old nemesis, the term "mental age," does have some merit. "The term mental age," The Arc's site says, "is used in intelligence testing. It means that the individual received the same number of correct responses on a standardized IQ test as the average person of that age in the sample population. Saying that an older person with mental retardation is like a person of a younger age or has the 'mind' or 'understanding' of a younger person is incorrect usage of the term. The mental age only refers to the intelligence test score. It does not describe the level and nature of the person's experience and functioning in aspects of community life."

In other words, "mental age" does not mean, as some erroneously believe, that the clock stopped ticking in some people's minds when the hands reached two or seven or fifteen. Mental retardation is not a childhood that has simply gotten stuck.

I observe that I too must alter my vocabulary. No longer is it proper to say, as I have all my life, that someone "is mentally retarded." As I discover on other websites, by using the new "People First Language," one focuses on the person first, the disability last, as in "a woman who has mental retardation," or "a man with mental retardation." The analogy is that people with cancer
have
cancer, they are not cancer itself; the disability is only one aspect of who they are. In addition, with People First Language, one can avoid using the word "retarded," which is too close to the familiar slur. In fact, some websites minimize the use of "mental retardation" by using as synonyms terms such as "developmental disability," "intellectual disability," and "cognitive disability." As I scribble down this People First Language, I realize that many of my acquaintances might disparage such linguistic changes as mere nods to political correctness, and for a moment I do, too. But then I think, Look at how many cultural barriers Beth has had to deal with throughout her life—and how many physical barriers people with other disabilities experience: sidewalks without curb cuts, restrooms lacking accessible facilities, cabs that refuse guide dogs. Altering the way I speak is
nothing
compared to what she, and they, go through
almost all day, almost every day.
And it is such a simple way to help transform the cultural landscape that it seems arrogant and misguided to resist doing so.

Back at The Arc of the United States, I learn about the causes of mental retardation, a broad category that includes anything that impairs the development of the brain in utero, during birth, or in childhood. Among the causes that have been identified are fetal alcohol syndrome, childhood diseases, and genetic conditions such as Down syndrome. But, surprisingly, in one-third of all cases the cause of mental retardation remains a mystery, as it does for Beth. That figure swells to three-quarters when you're focusing on individuals with retardation that is considered mild.