Читать книгу Do We Not Bleed? - Daniel Taylor - Страница 5

Judy has lived here for nearly thirty years. For most of that time it was run by the Sisters of the Good Shepherd and called by the same name, Good Shepherd. But they had proved themselves unfit in the eyes of government to provide modern standards of care and retreated, with sadness, to the cloister. (An uncommon change of mission for a religious order, but these are not common times.) A large, national, for-profit business, New Directions, had taken over in recent years and was trying to undo the damage the sisters had wrought.

A key part of that campaign involved procedures, guidelines, and models, not to mention action plans, safety plans, medical plans, socializing plans, work plans, and individualized learning plans (ILPs)—none of which the sisters had seemed to care about. The result was multiple shelves of three-ring binders, all in the process of being turned into computer files and databases. Professional care had, like the cavalry, arrived just in time. (I almost said “calvary,” further evidence of my misspent youth.)

All that orgasm of organization would have spelled doom for my participation had I really been expected to understand it. The executive director, Ms. Pettigrew, undoubtedly smelled my incompetence when I applied, but with the wages New Directions paid the hands-on workers, she was having trouble staffing the facility with anyone who could speak English. (Not that she would ever be caught suggesting that speaking English was preferable. Lengualism and all that.)

I remember the initial training session very well, sort of like I remember the sex ed talks in junior high and the drill sergeant in boot camp. I had already been working at New Directions for a few weeks. They waited for a quorum of new hires before having the required “Orientation to Working with Those with Special Needs” session.

Cassandra Pettigrew insists on leading these sessions herself. (I call her Cassandra to myself, but Ms. Pettigrew in the outside world.) She could farm them out to staff, but I think she wants both to stamp her authority on the head of every new hire—a sort of corporate 666, you might say—and she enjoys a forum in which she can demonstrate that she knows all the acronyms and you don’t. I thought the military had a lot of acronyms, but it doesn’t hold a candle to the political-sociological-medical-scientific-academic-bureaucratic-corporate complex. (Eisenhower was a piker with his mere “military-industrial” two-parter. There aren’t enough hyphens in existence to describe what’s going on in America today.)

I’m guessing Cassandra is in her early forties. She has lost the freshness of youth, but is not yet in serious decline. No longer slim, she is not yet stout. Her brown hair is cut short in a way that says “professional, but still a woman. Find me attractive, but don’t trifle.”

And she has a boatload of initials behind her name, something that shows up in every memo, staff listing, or newsletter to parents and supporters. She has worked hard to earn those initials and you better not forget them, apparently bonded to her accomplishments like a tick to a dog’s ear. She is Executive Director for a reason—and you aren’t.

Cassandra made one thing very clear during that initial training session. Loose lips sink ships—and employment opportunities at New Directions.

“Our clients are to be referred to as such—as clients. Because that is what they are. They are the source of our revenue and the raison d’être of our business. We exist to serve them. They are our customers. To an extent, they tell us how to do our business. Not by speaking directly, but by their needs. Their needs are our command.

“One may also call them residents—a term reserved for those who actually live here on the campus. They reside here. This is their home, at least until we can get them out into ILAs—independent living arrangements.

“There is one thing they must not be called. They are not to be called retarded.”

You could tell that even saying this word was painful for her. She pursed her lips and wrinkled her nose.

“The use of that word was once commonplace and it is still officially used in parts of the scientific and medical community. Some of our parents even use the word. But that is no excuse for any staff person using it at New Directions. It is demeaning, insulting, and inappropriate. It will not be tolerated. A first documented use of the word will result in a one-week suspension without pay. A second use will result in your termination.”

The emphasis she put on the word “termination” made me a little uneasy, but I reminded myself it only meant “fired,” which I had experienced before and figured I could deal with again. (After all, Zillah fired me as a husband almost two years ago, though it isn’t yet official.) When Judy and I were kids, everybody used the word “retarded”—and thought it perfectly acceptable—but my parents and I had only called her Judy, and so I figured I could avoid the R word as well as anyone.

“If you must use a generic term to refer to a collective medical condition, you should use ‘developmentally disabled’—up to the age of twenty-one. Once they are of adult age, ‘developmental’ is more problematic because an adult is not usually considered to be developing. After twenty-one they can be called ‘cognitively disabled’ or ‘intellectually disabled,’ though these terms would not fit everyone of course. All of our clients are cognitively disabled; many also have physical disabilities. All of them also have adaptive or behavioral challenges. And no matter what their needs, they all have their full AAMR rights.”

“You can’t tell the players without a program,” the vendors used to yell at the ballpark. I’m starting to think I need one.

“Some people, of course, wish to use terms like ‘differently abled’ or a wide variety of ‘challenged’ constructions. These are acceptable, especially if their use is initiated by a parent or advocate. You may wish to listen to the terminology used by the person you are speaking with and to echo such terminology yourself in conversation with them, as long as the term is acceptable. But it is always appropriate to use the word client, and that is the word I wished used among ourselves as much as possible. Is that clear?”

I nodded vigorously. I learned long ago that the question “Is that clear?” is usually code for “Do this or else.” What’s clear is that language is a weapons depot of small arms and high explosives, just waiting for a careless spark.

Cassandra then explained the different programs that each resident participated in during the day—day activity centers, sheltered workshops, non-sheltered workshops, work on the New Directions campus, public employment, and the like.

So far I was keeping up okay. But when she got to the federal programs, state programs, local laws and bylaws, industry standards, volunteer organizations, professional organizations, and best practices mandates—all identified by title, letters, and numbers—I was as lost as a lamb in a blizzard. I think maybe she was glad about that. She saw the look on our faces and smiled.

“Don’t worry if all this seems like drinking from a fire hose. As with any business, there’s a lot to learn. But I am confident you will learn. And I and the rest of the staff are here to help you.”

She then turned the training session over to Mr. Springer, the facilities manager, and left the room, the sharp click of her heels fading as she moved down the hall.

Bo Springer, I have since decided, is an example of Hemingway’s great American man-child. Zillah would call him a bro. He’s in his early thirties, but has not developed emotionally, spiritually, or intellectually since he was seventeen. He went to college, but proved impervious to books, paintings, professors, or any idea that required him to reconfigure his existing understanding of reality. For the bro species that understanding centers on beer, sports, porn, and video games. If he was conscious enough to form a philosophy of life, it would be something like: “I hang out, therefore I am.”

How do I know this? I don’t. It’s simply the conclusion I came to about six minutes into his talk at this training session, the first time I’d ever laid eyes on him. And it’s only been reinforced since. Quite judgmental of me, I know, but we make judgments about people that quickly all the time—blink, blink. (You’re probably drawing some conclusions about me right now.)

Bo talked to us about safety.

“Safety comes first at New Directions. Well, actually the clients come first as Ms. Pettigrew just made clear. But safety comes second. Or maybe third, since profit comes first or second.”

He laughed at the last bit and expected us to laugh as well, but none of the five new hires in the room reacted at all.

“That’s a joke of course.”

I nodded, though not quite as vigorously as when Ms. Pettigrew asked if everything was clear.

Bo went on to explain some of the safety rules, which were legion, and he gave us a fat notebook that chronicled the top few hundred rules, policies, practices, and procedures. Things like what to do if one of the clients pulled a fire alarm without cause (call the main office), or was reported missing (call the main office), or stabbed one of the staff with a fork (call the main office).

Anyway, that was the training session.

I’ve since broken a number of the rules I learned in that session, but so far I’ve gotten in trouble only once. It was when I was trying to teach J.P. how to tell time. They prefer that clients learn to read a traditional clock face. And my job, for thirty minutes each week during my shift, is to help him do so.

J.P. does not look . . . cognitively disabled. Since J.P. is an adult, he is not developmentally disabled, because he is beyond the normal age of development. So he is cognitively disabled, which I’ve discerned is slightly but measurably more appropriate than intellectually disabled, perhaps because it’s slightly more obscure and obscurity is highly prized when one is trying to speak about conditions that are, let’s not say undesirable, but certainly not highly sought.

But just between you and me (are you Nobody too?), I’ve streamlined all this for myself. I’ve divided the world into Specials (note the honorific capital S) and Normals (capitalized not to honor “normal” but to parallel the capitalization of Specials). I mean, we refer without embarrassment to special education and Special Olympics and special needs, so I’ve just reduced the wide world of cognitive disability to Specials. It simplifies things for me, and, believe me, I need things simple. I use the word with clean hands—disparaging no one, and with as clear a conscience as a borderline psychopath can muster. (I’m being too hard on myself in self-identifying as a borderline psychopath, of course, but that’s something we borderline psychopaths do.) And if you tell anyone I’ve told you this, I will deny it and call my lawyer. (Not that people like me have lawyers, so don’t worry about it.)

(You’ve probably noticed that I interrupt myself a lot. Since I live alone, I have no one to interrupt me, so I have to do it myself. I know it’s irritating and I apologize.)

Anyway, J.P. not only looks Normal, he is tall and almost handsome. In his late forties and just starting to gray around the temples, he could pass for a junior senator. I don’t know what his story is—they don’t usually tell us—but he came to Good Shepherd as a boy and has been here ever since.

J.P. is reticent and painfully polite. He learned early not to arouse disapproval. He wants to make you happy.

So when in teaching him time telling I ask if he can count to twelve, he smiles his small, suppressed smile and counts to twelve. He looks at me expectantly, hoping he has done well.

“Good, J.P. That’s right. Now, do you see this clock?”

I hold up a big, round wall clock for him to inspect.

“Um . . . yes, Jon. I see it.”

J.P. often starts his sentences with “um” or “mm,” a delaying strategy, I think, to allow himself a moment to consider what will please you. And he barely opens his mouth when he talks—or eats, for that matter. I’m not sure why.

“Can you point to the twelve?”

He does so and then looks at me.

“Can you point to the three?”

He does so again without problem. This is not the first time we have done this. It is maybe the fifteenth or fiftieth time (and others have tried before me). He always gets this far.

“Do you know what the hands of a clock are, J.P.”

“Yes.”

“What two kinds of hands are there on a clock?”

“Um, a big hand and a little hand.”

“Excellent. And which is the big hand?”

He points to it.

“And which is the little hand?”

He points to it.

“Now J.P., if I make both hands point to the twelve, like this, what time is it?” I move the clock hands.

“Twelve.”

“Twelve what?”

“O’clock, Jon.”

“Excellent.”

I don’t want to ask the next question. I never want to ask the next question. But the individualized learning plan (ILP) says J.P. must be able to tell time—like a Normal Adult—and so I ask the next question.

“If I leave the big hand on the twelve and move the little hand to point at the number one, what time is it then, J.P.?”

He looks at me. He knows this is where he fails. He doesn’t want to make me unhappy. So he just smiles and says nothing. I try my best to be nonthreatening.

“Just give it a try, J.P. It’s okay if you don’t get it right. Try to remember what we said last time about the big hand being on the twelve and the little hand pointing to another number. It’s okay if you don’t remember, but just try.”

He starts to rock a bit but doesn’t say anything. He knits his brow to show me that he is thinking hard, that he is trying. I repeat the question.

“If the big hand is on the twelve and the little hand is on the one, what time might that be?”

“Mm, twelve-one o’clock?”

“No, not twelve-one. Try again.”

“Um, one-twelve o’clock?”

I have read the articles on teaching time telling to people like J.P. I have tried all the techniques they suggest. They don’t work. J.P. does understand time, better than most of the other residents, but he doesn’t understand measurement, or clock faces—not traditional ones, not digital ones. He just doesn’t understand and a thousand years of instruction will not make him understand.

And I got in trouble for saying so.

Everything at New Directions—from individualized instruction to haircuts—has to be documented. For every minute you spend with the residents, you spend two minutes filling out forms to indicate what happened in that minute. And so when I filled out the form that documented our session that day, I made the mistake of writing that I didn’t think J.P. would ever learn to tell time and, even more offensive, that I didn’t think he needed to.

Cassandra Pettigrew was not happy with that assessment (who knew that she read them?), as she made clear the next time she saw me.

“It is not your job, Mr. Mote, to evaluate the appropriateness of our ILPs for each of the residents. Those are determined by professionals, including myself. James’s CPE tests show that he should be able to master the telling of time. The data are clear on that. Your job is to teach him to do so, not to question the appropriateness of the goal.”

“Appropriate” is a favorite word with Cassandra. The world for her is divided into two spheres—appropriate and inappropriate. It is inappropriate that J.P. cannot tell time and it certainly is inappropriate for me to say that he doesn’t need to.

“Do you understand, Mr. Mote?”

I didn’t say anything, but I gave her a small, suppressed smile. I wanted her to be happy.