The Special Folks

After college and without a degree to show for it I had a variety of menial jobs. A transporter/darkroom tech, A sound mixer for a couple of cover bands and I was in a couple bands myself. I worked doing landscaping (mowing lawns) with a bunch of musicians. All were part time and didn’t paid well but between the lot I was able to live from month to month more-or-less.

         It occurs to me that I have people on my friends list from
         each one of these endeavors as well as the one this blog
         is about.

One of the bands I played in was Annie Wells’ band. Besides being a dear friend Annie is a singer/songwriter/pianist that is simply wonderful! I am planning to write an entire blog about her at some point and you must go check her out right now: http://anniewells.com/ She's on iTunes too!

Annie’s day gig was treatment specialist at ARC (Association for Retarded Citizens). She recommended that I apply for a not-so-menial job there as a resident manager. I balked at first. Not so much at the prospect of working with retarded folks. It was the word “manager” that through me. Annie persisted and told me I wouldn’t have any problem getting hired or doing the job.

I later learned employees make fifty dollars for anyone they get hired but I know she would have encouraged me anyway.

After some training and certification, I was a resident manager at a group home. I soon learned that, the like vice presidents at some companies ‘managers’ were nothing special. In fact at ARC the managers were the lowest folks on the totem pole. I was only relieved.

Our job was basically to help our ‘folks’ as we were told to call them, live comfortably in their home. Make sure they kept themselves clean, cook there meals, deliver there meds, help them with goals in their care plans and document it all. I also had training on how to physically control and restrain a client without hurting them or myself. Fortunately I never needed it.

Since all of our folks spent their days at various ARC programs, our rotating shifts were evenings, overnights and 2 weekend shifts. The first weekend shift was fourteen hours on Saturday and Sunday each. The second was a brutal single all-weekend shift. We were allowed to sleep on the overnights and the long weekend shift.

Due to my own poor planning I once managed to find myself scheduled to work nights at my hospital job and a fourteen hour-a-day weekend shift at ARC. After being naturally awake during the day on Friday I worked all night at RGH drove straight to ARC to work all day with just enough time to get back to RGH to work all night and return once again to ARC for another 14 hours.

Never again! I paid better attention to my calendar after that.

The home I worked in was a rather nice large house in a nice Neighborhood just North of the Gannet Park Zoo in Rochester, NY. Not far from the “House of Guitars” It had previously been the residence and office of a family physician. The paneled basement was the doctor’s office which served us nicely as our office, meds room and storage.

The upstairs had a large kitchen, dinning room, entry foyer, a formal living room which no one ever went into and a front enclosed porch that had been converted to a “rec room” in the fifties where everyone spent as much time as they possibly could—that’s where the TV was located.

There were around eight folks who lived at St. Paul (all the ARC group homes were referred to by their street address). I’ve changed the names of everyone I refer to accept for one for reasons that will be apparent. They ranged in age from mid-twenties to mid sixties.

What they may have lacked in skills and abilities that you and I take for granted, they made up for in personality.

‘Barry’ proved to me that even if a man’s mental and emotional development happened to stop around the age of eight his body develops as anyone’s might with hormones and sex drive as healthy as a horses… okay, bad comparison.

Barry had a girlfriend, or at least claimed to have a girlfriend at his day program named Katherine.

“I want to kiss Katherine,” Barry would announce loudly. Then the voices, apparently, of his day staff took over. “No, no I shouldn’t kiss Katherine.” “I love Katherine… No I don’t love Katherine… Katherine loves me… No Katherine doesn’t love me.” Like all roads lead to Rome, any conversation with Barry eventually led to Katherine. His sexual frustration was palpable and constant. He was a slave to desires he would never understand.

You know, like all guys.

John had a different sort of motivation. He was a good looking guy in his late twenties. He liked sports.

As a PKU baby his disabilities were less apparent to the eye. Every day I saw John walk in the house from the program van he always had the same question for me.

“What for dinner?” he would say staring at the middle of my chest and with the back of his hand placed affectionately on my shoulder.

“Nothing,” I would always say. “We’ve not having dinner tonight John.”

“No,” he would say. He didn’t believe me but had trouble processing my lie. Sometimes I would continue with something outlandish like: “Okay John, dinner tonight is mutilated pigs livers and gravel.”

When I finally came clean with that evening’s menu, no matter what it was, he would express a brand of joy I find difficult to put into words.

Then he would sniff his watch.

John was not a big guy but as he approached middle age, his love of food was beginning to show.

You know, like all guys.

Henry was the eldest in the house and correspondingly gruff. He had a long gray beard and eyes so intensely light blue that looking him directly required protective lenses. He always wore a tweed suit jacket that along with his beard provided remarkable anthropology of his last several meals.

Everyone was a little guarded around Henry, residents and staff alike. Along with his intense eyes he had a history of outbursts. I don’t think I saw more than one or two minor incidents during my time there but everyone else’s nervousness was a little contagious so I tended to treat him cautiously too. Henry often kept to his room. He didn’t watch very much TV and rarely went on group weekend outings.

Some exceptions come to mind.

Every Sunday without fail we would drive Henry to the Record Archive (a record shop in Rochester) and he would purchase one Mitch Miller Album. I’m not sure how Mitch sustained his output enough to provide Henry with something new to buy each weekend and how the Record Archive kept a used stock that size on hand.

One day he joined several folks in the TV room. For no apparently reason, save for the one obvious to us guys, he pulled out his penis, gave a few solid jerks and put it way as nonchalantly as he had presented it.

I said nothing but I didn’t need to. The ladies in the room incredulously chorused “HENRY!”

He ignored them completely.

There were few events at the house during my time there that created more talk and sensation that the impending release of the first “Batman” movie.

It started out with one or two of the ladies who had been swept up in the McDonalds-based ad campaign and soon the rest of the house caught the fever. Even I was looking forward to the Saturday we were planning to take them to the theater, mostly because I was sick to death of hearing about it.

Henry seemed impervious to all the fuss but I the day of the movie outing I asked him if he wanted to go, as we always did as a courtesy. He would always politely decline. “No, no Joel I think I’m going to stay here.” On this occasion though he surprised me with a perky “yeah, I’ll go”.

Okay.

Henry in public was kind of a touchy thing. He didn’t do well in crowds.

At the theater Henry separated himself from the rest of the folks in our house. There was another staffer that stayed with the rest of them. I followed Henry.

Henry did pretty well. During a preview of the Lion King he suddenly said enthusiastically, “KITTY”.

I spoke back to him I an extra quiet voice instead of admonishing him hoping he’d get the hint. He didn’t but he didn’t feel a need to comment very often. During Batman when the action and the plot began to get intense he patted my knee and said “I’M GLAD YOU’RE HERE JOEL.”

Then when the action became to much for him and he’d had enough he simply stood up and walked out of the theater.

Naturally, I followed.

We hung in the lobby and used the rest rooms. Eventually he went back in, took his same seat and watched the rest of the movie without incident.

I admired him for knowing his limits and acting before it got the better of him. I’m grateful that I didn’t have to diffuse an outburst in front of the theater of strangers.

I would have to wait for the VHS release to find out what happened in those climactic moments of Batman.

The staff at St. Paul were a colorful bunch. I was used to being the odd duck in most crowds but I wasn’t even in the running there. I was the only one in our house who didn’t seem to have a life full of tragedy, a debilitating dysfunction or handicap.

There was one evening when a fill-in ‘manager’ I didn't know showed up and it took me a full five minutes to determine, without having to embarrass the guy by asking, if he was a staffer or one of the retarded folks visiting from another house. Honestly, I really could tell at first. He was in his forties and seemed rather disheveled and disoriented. I learned later that he was a recovering alcoholic.

Diane, like myself, seemed pretty normal. She was a college student at the University of Rochester and quite attractive. I had actually considered asking her out but I think she sensed this and told me sweetly but plainly that I was probably pretty naïve on what comes along with a cross-race relationship and that I should probably forget. I guess if it was love it wouldn't have stopped me but it wasn't.

One night when I was finishing a 3-11 shift Diane came in for her overnight. Soon after, the phone rang--odd for that time of night. Diane shouted from downstairs, “if that’s Tyrone, I’m here, if that’s Todd, I’m not here.”

It was Todd.

It’s the kind of detail that I never would have remembered. Like the thousands of day-to-day goings on that slip between the cracks after a few days or weeks. After I learned the next day that she had been beaten to death by her ex-boyfriend Todd when she got home from work in the morning, those last words I heard her say became stone pillars that will never erode.

It occurred to me years later that it’s possible that in putting off my advances she may have saved me injury or possibly saved my life.

Or maybe she just didn’t dig me.

When I arrived at work the next day our treatment specialist’s car was parked in the driveway. She was there to help us deal with something none of us had ever had to deal with before: Helping eight developmentally disabled folks understand that the staffer that they had said goodbye to that morning was now dead and it was going to be on the news.

A lot.

Todd had run to Florida where he was apprehended a few days later. I didn’t follow the trial but I have little doubt he was convicted.

It was hard on the folks at St. Paul and not just a little. They found just the high turnover of staff difficult emotionally. We acted as the adults in their family so it’s hard when we have to tell them we won’t be seeing them anymore simply because we found a ‘better job’. No one said this per say, but after seeing hundreds of staff come and go in their lifetimes, they knew how it worked.

With Diane it was that much harder and we were reeling ourselves from having lost a coworker and a friend so horribly and violently while offering comfort to our folks.

Then there was Tina. Tina was a four-foot-nine inch fire ball with Downs syndrome. The first thing that Tina will tell you when you meet her is that it’s “tie-nah, not tee-nah”. A pronunciation she herself invented at some point to correspond to her size.

Tina was in her thirties or close to it when I worked with her. She had a heart condition. Her lips and finger tips were often bluish. She was a diabetic who pricked her own finger and gave herself her own injections three times a day. I found it hard to watch because between the acres of scar tissue from previous injections and IVs and the swollen hard flesh from her heart condition, the needle actually bent a little before it piercing her skin.

Amid all her physical frailties she had a spirit that, if seen in physical form would have been somewhere between a flowing heavenly angel and a pro wrestler. She always had a joke or was as ready to laugh at one. I sort of thought of her as a Huck Finn the way she sauntered, her boyish red haired looks and the way her swollen tongue made her speech sound as if she were about to spit tobacco juice out of the side of her mouth.

Tina (remember, it’s “tie-nah”) was obsessed with the Partridge Family in a way that made Barry’s Love of Katherine, John’s love of food and Henry’s devotion to ‘sing along with Mitch’ look like passing fancies. More to the point, she was obsessed with David Cassidy.

Tina had stopped developing mentally and emotionally at thirteen. As a thirteen-year-old in the early seventies she and all her peers were wetting themselves over David Cassidy. Tina simply never grew out of it.

There is a Partridge Family album, in fact the first record I ever owned, where the birthday of everyone in the family is printed on the album cover next to their picture. David Cassidy’s birthday, April 12^th was the same as Tina’s. This proved to Tina that her destiny with David set in the stars the same way that movies are ‘available’ on DVD in China before they hit theaters in the US.

Susan Dey who played Laurie Partridge on the TV show and played keyboards in the band was at the time I knew Tina, playing a role on the series “LA Law.” This only further convinced Tina that her place was by David’s side as there was clearly an opening in the band.

Tina was not about to passively wish for these things, she was going to be ready. She rehearsed every night after dinner in the dining room, where the stereo was located. She strapped on her guitar put on her headphones and belted out the most gawd awful caterwauling you can imagine along with her many PF albums. Her practices were limited to a half an hour; a compromise with her housemates who wanted her to stop altogether.

Tina’s guitar playing was nearly as bad as her singing. Not knowing at all how to play she simply strummed the open strings with the vigor of Pete Townsend. I tuned her guitar to a nice open chord so at least the dissonance would be limited to her voice.

She believed her fantasy with such conviction she was able to convince her doctor it was real. She once came home from a doctor’s appointment with a prescription for ear drops. When asked what this was for she gave a cryptic answer and went off to watch TV. We called her doctor ourselves to get the story.

“The ear drops are for her trip,” the doctor said, “so her ears don’t bother her on the flight.”

“Flight?”

“To Los Angeles… She’s moving there… right?”

We were instructed to intervene in Tina’s fantasy, to interject reality and help her understand the difference between what’s real and what’s not.

I ignored this care plan. I never had the heart. I couldn’t see the harm. She was at the end of her life expectancy for a person with Down’s syndrome. It made her consistently and profoundly happy. Who was I to tell her she would never meet David Cassidy.

I only lasted a year at ARC. Six months full time and six months part time. They say it takes a special person to work with special people. That’s true, and it ain’t me.

I became another staffer in their life’s who came and went. The most consistent thing in their life’s was each other and even that changed from time to time.

A few months after my last shift at St. Paul I happened to be at my brother’s apartment. His roommate had a news paper lying around. I happened to glance down at a small sidebar article.

It was a picture of Tina, standing next to David Cassidy. She was smiling so wide she must have been sore for a week.

David had recorded a new album and was touring heavily to support his comeback (anyone that shows up in Rochester NY is touring ‘heavily’). One of the managers at St. Paul was also a jock at the local pop station and a photo-op was born.

Tina died of heart failure only a few months after her meeting with David Cassidy. I’m glad I had the chance to know her and to learn that reality doesn’t stand a chance against a dream.