Riding the Bus With My Sister: A True Life Journey (22 page)

"Do you like that schedule?" I ask him. He is standing beside his seat, blotting the coffee stain, to no avail.

"Most of them do," Beth offers.

"You bet," he adds. "But one thing makes it inconvenient. It keeps me from being home in the morning when my kids wake up for school." Forgetting to contain his fatigue, or even clap a hand over our view of his dental fillings, he commences a lion-sized yawn.

"Number fourteen," Beth says.

"I've got an idea for you," Bailey said to Beth one day last winter.

"What?" A lady with a dowager's hump, who had kept to herself for miles, had, as she descended the steps to leave, suddenly leaned over the partition beside Beth's seat and screamed in her face, "Get a job!"

It is, as I know well by now, a familiar refrain. Why, some passengers think, should they labor for fifty years behind a forklift or cash register, why should they strive to get off welfare, why should they pay a cent of their hard-earned retirement savings for taxes,
if this woman can just sit on a bus all day?
It's a variation on what our family feels, though while we despair that Beth doesn't want more for herself, some riders seem to feel envy and outrage.

On that frost-speckled morning, as Bailey proceeded away from the curb, the lady still squawking up at the bus from the road, Beth drew on her usual resilience. "What's your idea?"

He said, "Maybe you can help me out."

At the end of that run, in the drivers' room, Bailey explained to Beth that he had a problem. His three teenagers, who all
could
rouse themselves, increasingly needed a nudge—or some days, he sighed, a cattle prod—to swing their feet from the bed to the floor on school days, and his wife's job now required an early shift, too. "I'm in a bind," he told Beth. "I need someone who can make sure my kids get on the school bus."

So Beth became, as he called it, his babysitter. Throughout the winter and spring, as dawn ascended over the mountain and Happy Timmy rhapsodized about the timelessness of the sunrise, Beth carried out a mission. She rode to Bailey's neighborhood, then hastened up a hill to his house. Into his unlocked back door she went, flinging off her coat, flicking on the kitchen radio, spinning from their evangelical gospel readings to her preferred Jammin' Oldies station, and settling down at the table for a few tunes. Often Bailey had set out a glass of orange juice for her, along with the Flintstones vitamins he kept hoping, in vain, that she would take. Instead, she extracted from her knapsack a baggie of M&M cookies. She stared at the clock over the sink, nibbling until the agreed-upon moment; then she bounded upstairs, planting herself at each of the three doorways in turn. Beyond them sleeping figures sprawled on beds. Using a voice louder than any bugle, she called out, "Time to wake
up!
"

Beth saw this arrangement as a worthy barter: all she had to do was stir Bailey's kids, and in return she received his guaranteed approval, as well as protection from cantankerous riders on the bus.

Bailey, though, had mounted a secret campaign. Yes, Beth alleviated his fear that his children would sleep through the homeroom bell. But he was strategizing for something beyond his own domestic concerns. He thought Beth might need some stirring, too.

As I learned at the annual Plan of Care, S.S.I., the governmental assistance program that pays Beth the money on which she lives, is for people sixty-five or older, or blind, or who have a disability, provided they have few possessions and little income, and that they cannot work.

And Beth does have difficulty holding jobs. Initially proud of herself for working and motivated to perform tasks well, she'll come to feel excluded from the social life in the staff room, or picked on for being told to wear a bra, or
bawd.
Next, she'll grow distracted by an
awesome
man in another department, or by Erika Kane's soap opera nuptials—far out of reach on her home TV—and suddenly instead of placing the required sixteen widgets in every bag, she'll put in twenty-three, or seven, and will scarcely contain her pleasure when the employer lets her go.

But her job loss does not essentially alter her income, since her'S.S.I. benefits are cut back proportionally after she earns even a small amount of money. Thus, she need never experience the drudgery of a job. However, she also need never be exposed to the bonuses not listed in any employee handbook: fellowship, purpose, accomplishment, negotiation skills, or the satisfaction that can come from contributing to society.

Our conversation on this topic is an old one. Before I joined her on the buses, it typically went as follows: "You're so smart and fun and capable," I'd say. "You'd get to be with people and be really useful if you had a job, or did volunteer work, even for an hour a week."

"I don't want to volunteer. I don't want to do anything that won't make money."

"So what about a job?"

"I'd work if I had to, but I don't have to, so I won't."

When I started riding the buses, I was so enthralled by Beth's happiness and cooperative relationships with the drivers that I forgot about my wish that she would work. But in the past month, when Beth completely eschews the idea, a sourness burns in my throat. Not only does the rest of our family have a strong work ethic—ridiculously strong, in my case—but as I have come to see it, she is selling herself short.

As summer advances, my patience with this matter grows thinner, and I find myself slipping in the topic whenever I meet up with professionals in the field. A few confide that they know other individuals with developmental disabilities who've also found this loophole. Some professionals feel strongly, and one of them, a woman who once worked in a group home near Beth's, gets passionate about the subject when I call her to discuss it. "I think it's fine that Beth does her own thing," she tells me, "but it's not fine to thumb your nose at society. Beth thinks, I don't have to do anything anyone else does, but that's an immature, self-centered way of looking at the world. I'm not going to patronize her, and that's what I'd be doing if I believed she was incapable of holding a job.

"Many other people I work with—people like Beth—have jobs. They want the world to believe that people with disabilities can be productive, contributing members of society. That's why some of them are embarrassed when they see Beth spending her life on the buses. They don't think it reflects well on them."

Other professionals, though, defend the'S.S.I. policy to me: "A lot of places wouldn't hire her anyway; how many businesses really want to deal with what it would take to keep her busy, even if she
did
want to be there?" They say, "No one in the field will criticize'S.S.I. What if she didn't have a safety net?" They say, "If you don't like it,
you
pay for her."

As the days grow hotter and the conversations mount up, I feel guilty and pushy for wanting her to live a more responsible life and dismayed that anyone might believe that she can't develop further. But I feel enraged when I speak with people who don't know anyone like Beth and find it quite simple: "The buses are all she can handle," they'll say. "You should be pleased she can do that much." I want to shout back, "You're looking only at her disability, not her abilities!"

So, aware that Bailey's kids have finished the school year, I try introducing other options. I cheerfully offer to help Beth with applications at supermarkets. "Maybe in a year or two," she says. Okay, maybe she doesn't want to pack grocery bags; I can understand that. Thinking about the affection for animals she developed after we acquired Ringo, I volunteer us both for an hour at an animal shelter. We go into a holding pen of cages containing cats awaiting adoption, where the windows are too high to see more than a sliver of cloud. As the volunteer coordinator requested, I lift the cats out of their cages so we can cuddle them. But when I suggest to Beth that she show them attention, she gives a dutiful stroke, holds a cat I hand her as if it were a sack of potatoes, then fixes her eyes on the windows, and says, "How much longer till we go?" Fighting anger, I phone the head of the bus company and plead with him to find a way to employ her—cleaning buses, giving callers schedule information, anything,
anything
! "I can't," he says. "It's union, which means full-time. Your sister doesn't want full-time." This, Beth confirms as I seethe silently, is true.

One day, Bailey calls me, discussing the job ideas he has for her now that the school year has concluded. After all my futile conversations with others, I almost melt with gratitude.

"I'm trying to figure out her skills," he says. "She doesn't realize it, but I'm trying to see if she can memorize things. Maybe she can handle office work or a store. I'm also trying to build up her ability to take risks, so she can walk into a work environment with courage. It's a very lonely place that she's in now, a kind of rut. I want to help her develop more self-confidence. But I'm taking it one step at a time. That's why I started with her babysitting my kids."

"You are such a gift." I sigh.

"I'm just being optimistic that it'll all work out, same as I am with my kids, no matter what they throw at me. I want to see them—and her—do well."

"Oh, God, so do I," I say, swinging the phone cord.

But as I place the receiver in its cradle, the glow fades fast. Beth does not share our idea of "doing well," and last week Olivia explained to me that Beth's preferences are what matter most. There's a whole social movement, she told me, called self-determination.

The self-determination movement was triggered by news reports like Geraldo Rivera's many years ago. I had never forgotten the images from Willowbrook: naked children covered with welts, people in straitjackets, feces slathered on walls. The inhumane conditions at Willowbrook and some other institutions set off public outcries, lawsuits, and eventually the release into the community of many people who had formerly been confined. The concept of self-determination was born, though it drifted below my radar until this year.

Self-determination, I now know, is one of the most momentous civil rights developments in the history of mental retardation in America. It says that people with mental retardation should have the same choices as all citizens. If Beth wants to live on her own, go camping, register to vote, or raise a family, her provider agency will help. If Beth doesn't want to meet Olivia during the day, eat anything green, wear a bra, or get a job, the agency will not compel her to do so.

Instead, it might provide options. Let's suppose she didn't want to go to the Laundromat down the street. It might say, "Would you like to get some soap so you can wash your clothes in your bathtub?" It might also attempt creative solutions, such as, "Here's a map. Let's find other Laundromats in town." But it won't twist anyone's arm, and unless a person's health and safety, or the health and safety of others, are in jeopardy—someone refusing to take medication to control a psychosis, which then leads to violent impulses, for example—the agency won't take preventive action. In the case of neglected meds for mental illness, it would seek the support of psychiatrists and/or law enforcement agencies. But when major health issues and safety are not factors, it tries to help the individual understand the consequences of her actions, and allow her to learn, as we all do, from her mistakes. This is, in short, the main guiding principle that had so eluded me in Beth's Plan of Care meeting.

One day, Olivia tells me about a nearby conference on self-determination, and I decide to attend. On the first morning, two hundred professionals and I take our seats, and then the seminar leader, who has worked for three decades with individuals who have developmental disabilities, strides to the podium.

"In some areas," he starts, "people have been placed in group homes based on their diagnosis. But what if someone wants to live with a friend who has a different diagnosis? What if you don't want to eat exactly when you're told it's time for lunch? It's time that we listened to each individual to find out what's important to him."

I look around The audience is beaming and, I think, it
does
sound right to me.

Then he says, "However, this can be challenging." He launches into several real-life scenarios describing individuals making choices that led to self-defeating or high-risk behaviors, or that could have been harmful to others, and asks the audience what we think should have been done in each situation. Hands go up, ideas pour out—and there is widespread disagreement. People have different values, or incompatible thresholds for intervention, or contrasting ideas on what it takes for people with MR to understand consequences.

When the audience files out for a break, I'm so confused that I'm practically tripping over chairs. "So how do you know what to
do?
" I beseech the people near me on the coffee line.

"There are no hard rules," one says. "You just do what seems best."

"We're still working out the snags," another offers.

"We just have to encourage accepted social norms," says a third.

"Society doesn't agree on its norms," a fourth says. "They have to be the individual's."

"I hate this crap," a fifth one whispers. "This is why I'm trying to leave the field."

"I love self-determination," a sixth one says. "It's time we respect everyone's individuality."

"But if you guys can't agree," I ask, "how can
I
figure out the right things to do?"

Bailey's run has funneled us into a traffic jam, and as he inches forward, talking at standstills about his children's latest scrapes, he does not become ill-tempered, as do so many automobile drivers in highway delays.