The job I held the longest in college was working for a company that taught living and employment skills to developmentally disabled adults. I worked overnight and weekend shifts in the supervised living apartments for fifteen months. Clients who lived there were termed “high functioning”: people who had the potential of someday living independently. I believe there were seven two-bedroom apartments in addition to the office and a laundry room. It was a great job, involving a lot of hours, not bad pay, and very interesting clients and staff to work with. I was toying with a major in Psychology at the time, and this seemed a decent way to get some firsthand knowledge of the interesting and sometimes tragic things that can cause problems in the human brain, and how those problems manifest.
One of my first duties on a weekend shift was to take some clients to the grocery store with another staff person. My task was to help them make sure they got everything on their list, and that they paid for it as budgeted. Some clients had written lists, others had pictures. The other staff person took three people, and I took three and since it was pretty tightly organized, it went smoothly. We got the looks, though. In the aisles, as shoppers were picking out their Dinty Moore stew and their macaroni and cheese, they watched us doing the same thing, a college girl and three middle-aged people with obvious disabilities, moving as a closely knit unit through the store. A woman in her forties stopped me and said, “I just think it is wonderful what you are doing; I know I couldn’t do it.” “Uh, thanks,” I stammered. What I was doing wasn’t that difficult, actually, although three grocery lists were a little more than I was used to managing, but I understood what she was saying. And it bothered me. I felt she was making a bigger deal of it than it was, to justify why she preferred not to deal with people who are different. We were just folks getting groceries, for Pete’s sake. We weren’t leaking contagion, or howling epithets at passersby, we were just checking to see if our cash on hand would allow us to spring for a can of spaghetti WITH meatballs. And feeling pretty pleased with ourselves at the checkout, when all the purchases were successfully paid for with the money in the envelopes, and all the prized food was ready to go back to the apartment. Mission accomplished.
But back at the ranch, as I was fond of saying, my inexperience created a difficulty. Karen (not her real name, no real names here today) a woman with Down’s Syndrome and on a diet to avoid additional weight gain, had unpacked her food and put away her pudding cups in the cupboard. My understanding was that she had to keep her pudding cups in the office, because of her tendency toward pudding frenzy (a phenomena I am personally familiar with.) My insistence on taking the pudding with me to the office had her in furious tears, and I felt awful. They were hers, she insisted, and she could TOO keep them! But rules are rules and I was the authority and she sorrowfully watched me confiscate the beloved snack. I felt like a monster, but wanted to help her keep to her program. When I got the office, Bill, the program manager, informed me that Karen had just moved to a new level of her program and COULD have the pudding cups in her kitchen as a reward for keeping her weight down and showing self-discipline. A fact that she was well aware of. “Oh, good Lord, I have to go apologize,” I said, turning around immediately. The joy in Karen’s eyes when I handed her the pudding with a sincere apology had a lot less to do with the fact she’d gotten her food back than it did with the relief we both felt that I was no longer a jack-booted thug, but a friendly helper and all was right with the world! We celebrated our reconciliation with a good laugh. “You’re all right!” Karen exclaimed happily, telling her roommate Sheryl, who had cerebral palsy, “I like her!” Karen pretty much liked everybody, but I have rarely felt so happy to get a thumbs up. Sheryl laughed with us, just glowing with happiness that everyone was getting along, her wiry arms clapping her hands together with difficulty, forcing each word through uncooperatively locked muscles in her throat and jaw.
The night shift was full of silence. The hours were something like 10 p.m. to 6 a.m. and in that time the lone staffperson was expected to stay awake, do some quiet cleaning, medication counting and set-up, and regular rounds to make sure all was well. Some of our residents had seizure disorders of one kind or another, and one in particular, Mark, had to be monitored. Mark was a strapping man, who had a relatively minor cognitive delay and some speech difficulty. He had a job, and didn’t really have any need for programs to help him learn independent living skills. He would probably have had an apartment and a car, or better yet, a motorcycle, which he would have loved, except for a catastrophic case of epilepsy. When he was having a a grand mal seizure, which he did at least once a week, his whole body went rigid and spasmed as if he was being electrocuted. As a witness, I felt helpless, and as the person seizing, Mark felt even worse. After an episode he almost always glared at anyone standing by and staggered off to the bathroom in humiliation, having to change his clothes after losing control of his bladder and nearly everything else. He hated the seizures. Every night, after he fell asleep, when we checked in on him on rounds, we had to move the radio he listened to away from the side of his bed, so he wouldn’t land on it if he fell out of bed. One night I happened to hear him thumping against the wall in seizure mode, and ran into his room to watch in horror as his body, stiff as a board, heaved up onto his right side and he tipped over, off the twin bed, landing flat on his face on the floor, catching his broad shoulder on the radio, which I had left two inches too close. The next day an angry purple bruise in the shape of a right angle commemorated the incident. He held no hard feelings, he said, but as always, he didn’t want to talk about it.
Mark’s roommate for part of the time I worked there was Philip. Philip had lived a long, relatively normal life, but was succumbing to a form of dementia that was eroding his ability to reliably take care of himself. He was a small, sweet man, fond of talking to himself as though he were making commentary to a beloved, quiet spouse always nearby. He referred to a lot of things as she: “Yep, she’s a nice day out there,” or “Yep, she’s a red car, there on the road.” One Saturday I was in their apartment, performing a routine annual maintenance task: pulling the electric range out from the wall and cleaning behind it. In order to do this, I had to remove the drawer underneath the oven, lie on the kitchen floor in the narrow galley kitchen, and unplug the appliance so it could be moved. Philip was in the living room while I worked. I grasped the thick plug and tried to pull it from the outlet, but it was really tight and only pulled out a hair, so I wiggled as close as I could and tried to get a better grip. As I pulled, my finger slipped and touched the prong. 220 volts of electricity coursed through my body, and I don’t remember a thing about it. When I came to, the oven plug was lying on the floor next to the outlet. I was still on the kitchen floor, but my back was now pressed against the refrigerator across the galley from where I had been. I could hear Philip in the next room saying, “Yep, she’s a yellin’ in there,” so I guess I must have given out a squawk of some kind. I slowly got to my feet and staggered off to the office, exhausted and headachey, but glad I didn’t have to change my pants. I decided to leave the rest of the oven work for the next shift.
Sarah had a particularly sad situation. She had lived a fully independent life, until she had accidentally fallen asleep in a running car, or at least that was the official story. Carbon monoxide poisoning had destroyed her short term memory. She read books, and did crossword puzzles and was very productive at the Work Skills Center, where she and other clients worked simple jobs under supervision and earned small paychecks. Sarah couldn’t remember what day it was, or if she had gone to the park that day or had dinner yet. It made her nervous. She kept a calendar and checked off daily events so she could keep track of her life, but it wasn’t enough. “Well, isn’t that a stupid thing!” she said often, perhaps fifteen-twenty times a day, either with a look of amused “Am I right?” in regards to the hat and mittens that turned up in the office where she left them instead of in her closet where she expected; or in anxiety because feeling lost all the time was getting her down, and there was no soup in the cupboard and soup was what was on her menu, and it was ALL stupid, the menu, the missing soup, and the uncertainty of whether the soup was missing because perhaps she ate it an hour before and forgot to check it off; or in full-on tears, defeated yet again by the checkbook register she was re-learning to use. Every day she practiced the same steps, trying to do the task without relying on written instructions. If she could, it meant the repetition was helping her shift the skill into her long-term memory. Some days it seemed that the only thing she remembered about the task was the incessant frustration. She remembered some things about her previous life, I was told, but she never talked about it. She smiled often and kept going, but I thought her life must be a form of hell.
We kept track of the clients’ money, medications, and progress towards their goals. We took them shopping and on recreational outings to the movies, or the pool. They checked in with us in the office if they wanted to go for a walk, or visit a friend in one of the other facilities in town, or most exciting, go out with a friend or family member who came to spend some time with them. We tried to keep them safe. One Sunday afternoon a couple of the women came into the office with a young man. “This is my friend, Joe,” one of the women told me, smiling. “He came to visit. We are going to get ice cream, okay?” This was unusual. Most visits, which were sadly rare, were set in advance. “How do you know each other?” I asked. “He is from my home town,” she answered. “Sorry, I didn’t know I needed to call ahead,” the guy said. The other woman with them over-enthusiastically affirmed they were old friends, but I couldn’t tell if her dramatic assurances were anything more than her usual over-the-top exuberance. I couldn’t tell if the twist in my gut was a red flag or just nervousness from an unexpected change to the schedule. The young man was a little skeezy, but no worse than some of my own friends. It seemed cruel to deny the outing just because it wasn’t pre-arranged. I let her go. Of course, the guy turned out to be a perv she had met just that day and he had sex with her. She came home with ice cream and the intrigue of having gone on a “date;” she had been exploited, but was otherwise relatively unharmed. I was sick with regret. I got very, very drunk with the result that I do not drink whiskey to this day. The perv was prosecuted and I testified at the grand jury trial. I missed a hiking trip on Spring Break my junior year because the full jury trial was scheduled for then, but at the last minute the perv plead guilty and I didn’t have to testify after all.
That was a tough one. I still have a hard time letting go of the guilt, and it colored the rest of my experience there. I was also worn down to the bone from staying up all throughout the overnight shifts and attending classes during the day, and trying to get my studying done and sleep in between. There were some great memories though, like the Thanksgiving I spent with the residents who didn’t have anywhere to go, where we cooked the whole feast and I actually remembered how my mom made turkey gravy and it turned out. Everyone was so happy about it. Everyone there was usually pretty happy, and it changed the way I saw life. You could argue that they were happy because they didn’t have the capacity to grasp everything wrong with their life and their world. I had a psychology professor who once compared mentally handicapped people to animals. I confronted him after class and burst into tears (because confrontation rattles me,) to both our embarrassment. I’d argue that most of us lack the sense to let go of the BS that makes life so grim, so that we can embrace the minor wins in life that make it rewarding beyond all measure. Soup in the cupboard? Amazing! A friendly word from someone? A miracle! The utter BS that trips us up? It happens; move on, pal and open up for that next amazing, miraculous moment. Anybody can see that this is a good approach, but it takes a person with a special kind of wisdom to live it.
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