Wednesday, February 22, 2017

Affective Needs--Chapter Ten

**New chapters posted here every Wednesday**

Karen, for almost my entire visit, sat staring blankly at an old box television showing reruns of Friends in the community room of Harmony House.
The director of the facility, Samantha, had greeted me when I first arrived. “Almost no one ever comes to see her anymore. She’ll be happy to have the company.”
“Does anyone visit her?”
Samantha hesitated. “Not really. There’s this lawyer from New York who comes once a month.” Her tone was suddenly sharp and annoyed. “Makes sure we’re treating her right, I suppose. But other than that, she’s a ward of the state . . . and she doesn’t have any family, at least not any who are allowed contact with her. The researchers who used to run her through a million tests when she was first discovered are barred from having any access to her now.”
My mother and Samantha were acquaintances, fellow alumni from graduate school, which was why I was allowed to come here in the first place. So I knew some of Karen’s history. When she was two years old, her father, who must have been completely insane, started keeping Karen locked in her room day and night and wouldn’t allow anyone else in the family to even speak to her. Ever. When she was fourteen, she was accidentally discovered when her father fell asleep in his bed smoking a cigarette and the house caught fire.
When the firefighters arrived at the home, Karen’s mother had managed to escape through her bedroom window and told them that her husband and son were still trapped inside. She didn’t even mention Karen. Inside the blazing house, the firefighters had no idea where any of the other family members might be. When they came to a door on the second floor that was padlocked on the outside, they broke it down and found Karen, cowering in her dirty rags, locked inside the chicken-wire cage where her father kept her day and night.
They broke her out and carried her to the waiting ambulance. Her father and older brother were already dead from smoke inhalation.
Karen was so malnourished and small, medical staff at first thought she was six or seven years old instead of fourteen. When the mother, free of her husband’s abusive control, finally started to speak and tell them what Karen’s living conditions had been like for the previous twelve years, the news story was an international scandal, and researchers from all over the world wanted the opportunity to study and test Karen. Many of them did, until she turned eighteen and it was determined that all of their interference was having a negative impact on Karen’s development and improvements.
Karen was in her early thirties now. It had been almost twelve years since anyone had been allowed to study her—and yet here I was, a stupid high school student, sitting, staring at Karen staring at the TV. A blank notebook in my lap and a pen squeezed between fingers that hadn’t written a word.
All those researchers would probably kill each other to have the chance I was wasting right this very minute.
Of course, the only reason I was allowed here was because I wasn’t a real researcher—not yet anyway. Also, I wasn’t exactly studying Karen specifically, just making observations, and nothing I would write would or could be linked directly back to Karen. A simple comparison between two people, both with cognitive disabilities, one who was raised in a caring and loving home and had access to professional education all her life—and one who had none of these things.
This was the heart of my senior honors thesis—nature versus nurture. How were Maggie and Karen fundamentally different because of the vastly different environments they had grown up in?
I glanced at my phone, only fifteen minutes until my first scheduled observation was over. The blank notebook seemed to glare up at me, so I forced myself to sit up straighter and concentrate, think of something to write—anything.
My eyes drifted to the television and the purple-walled apartment of the main characters, who were sitting on the couch exchanging snarky one-liners while the laugh track played along in the background.
I wrote, The subject spent the entire time staring at first one episode of Friends, and then another. Truly, this was groundbreaking stuff. The admissions board at Princeton was going to thank their lucky stars they had snatched me up with that early offer into their neuroscience department.
I sighed and closed the notebook.
Samantha was wrong: Karen didn’t look happy to have the company, she didn’t look like she knew anyone else was even in the room. Completely the opposite of Maggie, who would smile and jump and rush to get me to play a game with . . .
Of course. How could I have been so stupid? I opened my notebook back up. I had been waiting all this time for Karen to do something, show some sign of engagement, with me, with her surroundings. Some sort of behavior I could observe—anything. But the very fact that she didn’t, wasn’t that something? Some huge way that she and Maggie were different?
Even though Maggie had a cognitive disability, she talked, moved, played—interacted with her world. Maggie had the skills required to have relationships with other people.
I was beginning to think that Karen didn’t have any of these skills—because she had been so horribly deprived of ever learning how.
What would that be like—locked away, every day of your entire childhood? Did her father think that it simply didn’t matter because she was cognitively disabled? Was he ashamed of her? How could a person be that cruel?
The door behind me opened. Karen didn’t move a muscle, but when I turned I saw Samantha coming in: my signal that our time was up.
“Well, how was the visit?” Her tone was light, like before, but her expression looked strained. Something was worrying her.
“Fine,” I said, as I packed away my notebook and pen. “Not much happened.”
The director nodded as she glanced at Karen. “She doesn’t have many words, and the ones she does have are used as single words . . . like when she wants something. Food, a drink, her favorite doll. That was one thing the researchers did determine before they were forbidden to examine her anymore, that because she had missed out on hearing language during a key point in her early development, she missed out on the opportunity to ever really acquire any functional use of language.”
I looked at Karen, still staring at the TV. “She couldn’t learn, even after they found her?”
The director shook her head. “Apparently, there’s a window for language acquisition, when we are very young—she missed hers.”
It was awful. I imagined her initial cognitive difficulties also made it more difficult for Karen to learn language once she had been found. Maggie had learned many, many things in her life—but she was still nowhere near a typical seventeen-year-old. Karen had the delays, on top of never having been taught anything. Even twenty years in a supportive environment hadn’t been able to correct all that she had lost.
I pulled my keys from the side pocket and swung my bag over my shoulder. “Can I come back next week? Maybe during a different time of day when she’s a little more . . . active?” Surely Karen didn’t always just sit and stare at the television. “Maybe during her dinnertime?” I was hopeful that I could catch her doing something—anything.
The director was biting her lower lip and her worried expression had returned. “I’m not sure, Ruth.”
Something had happened. When my mother first contacted Samantha and asked for this favor, she had enthusiastically agreed. I didn’t understand where this sudden hesitation was coming from—I worried it was me. “Did I do something, something wrong?”
“No!” she shook her head. “No, not at all,” she sighed. “While you were here, that lawyer, the one from New York I told you about, called to check up on Karen. I happened to mention that she had a visitor—I thought it was a good thing . . . but she got pretty upset.”
“The lawyer?”
“Why? I mean, it’s not like I even did anything,” I said, thinking of my paltry notes. “All I did was watch her watch TV.”
Samantha shook her head, “I know, and to be honest with you, there isn’t anything wrong, legally, with you coming here under my direct supervision. So long as I have the final say on anything you write, remember. When I think about it, I’m not really sure why Ms. Atwater is so upset.” Her brow wrinkled as she stared at a spot somewhere in front of her field of vision, as if she were trying to figure it all out. “Or even if she has the right to be, for that matter . . . it’s not like she’s Karen’s legal guardian.”
She fell silent and a moment later shifted her gaze to me. “Don’t worry. This isn’t your problem; I’ll figure it out. When do you want to come next week?”
I thought about my schedule for half a second. “Monday?”
She nodded. “Okay, same time, same place.” She smiled, but I could tell she was still a little worried about the lawyer.
“Thanks again. I really appreciate this,” I said as I reached out to shake Samantha’s hand. I turned to Karen; basic social grace urged me to at least say good-bye to the someone I had been staring at for over an hour—but it felt weird since I doubted she’d even realized I was here in the first place. I decided to forget about it but when I started to turn around—Karen raised her hand.
I froze and watched. With her eyes still glued to the TV, the four fingers on her raised hand moved up and down, up and down, and then she lowered her hand.
This whole time, I didn’t think she was even aware I was in the room—but she just said “Good-bye” to me in sign language.
“Good-bye,” I said back.
But she didn’t move again.
Thank you for reading chapter ten of Affective Needs. A new chapter is posted every Wednesday. If you don't feel like waiting for updates, here is the link to my book page and all the vendors that carry my books. Happy reading!