We all have our tool-boxes for our trades and professions…some of us might have literal boxes with the known tools of screwdrivers and hammers and levels and wrenches…bottles of oil that shoot smoke into engine compartments that help us find leaks in hoses, or figurative boxes with our paint brushes and palates, pencils and erasers, thumb-drives, bags with cameras and lenses and film (maybe), reference books, mortars and pistils, surveying chains, books of flight plans and maps, stethoscopes and syringes…or whatever. And some of us have other things…like years and years of advanced education and hundreds of books…and hundreds of toys…things that stimulate minds to thinking…or relax them from their stressors…things that unknowingly open the doors of others’ minds so that those who are interested in helping them can finally see inside, can finally see the things that have been hidden for so long…because they didn’t know how to open those doors and windows on their own.
My wife is one of those people who has a tool box that contains those many years of education and hundreds of books and hundreds of toys…and who is skilled at opening minds and helping the bearers of those minds to find ways of expressing themselves…helping them find ways of communicating even with themselves…and then drawing maps for the rest of us to follow when trying to understand those minds so we can enter and share their previously closed-off worlds. She works with autistic children and their families…spends hours on the floor with brightly colored toys and objects, pushing, searching, compelling, and connecting with those little ones…gently pressing and urging them into opening their minds….
This past Saturday, I stopped-by my wife’s office to pick-up her laptop…and, since I had my camera with me…I took a few pictures of the toys that decorate her office, those “tools” that draw smiles and widened eyes on the faces of even the most reserved and stoic of fathers who accompany their little ones to their appointments, those tools that are often selected specifically for that particular little one to whom they would appeal. I think it would be wonderful to visit such an exciting and even calming place if I was going there for help….and I can understand the little ones’ distress when their sessions are over and it’s time to leave such a fun place…a place where they think they’re just playing…but are actually building a relationship, learning the social rules of give and take, finding words they didn’t know they had, and allowing someone into their world, sometimes for the very first and significant time.
The children often take these figures and play-out little portions of their lives with the other settings in the office. In addition to the doll house and fire/police station, my wife also has a sand-box and a little multi-leveled tree house that makes a great landscape for their adventures and re-enactments (the photos didn’t turn-out very well).
Gerilynn would avow, maybe, that the quality of life is determined by whether or not one of the attendants brought her carrots after she so slyly positioned herself in front of the dining-room table. She would avow that there were not many things in life that were more worthwhile than that little treat – the sound and feel of hard, orange pieces of vegetable being crunched in her mouth. Are the crunches and mashing of carrots as loud in her ears as they are in mine? After she chews so many of them, does she find it a little hard to swallow, like I do? While she seems to give it no attention, does Gerilynn even notice the leather harness that holds her in the wheelchair? I know it’s necessary, but it unsettles me. The strap seems unkind, somehow; like a device from a less civilized age.
The stare is almost empty, the eye-glaze is almost complete as the look from her soft eyes drives itself carelessly into my awareness. Tufts of hair are smoothed by the attendant.
“Oh, she can’t talk.”
Oh, I think, Gerilynn can’t talk. She sits there, belted into her wheelchair, has her hair smoothed, near caressed, sways a bit to herself, and then pedals slowly into the other room.
Oh, she can’t talk.
From a different room, not too far down the little hallway, comes a wailing – something like the sustained bleating of a lost, frightened lamb. It pierces the otherwise quiet night, causing me to wonder at the possible circumstances which might have given rise to this “noise.” I come to understand that Judy is in the shower, and she hates it – she doesn’t like the water hitting her uncovered body, making her cold. Her cries…making me cold.
“It’s all done now! It’s all over! You can stop crying. See, you’re dry now!”
I am still cold. Does she think that, too, with those same words? The bleating continues….
Where does responsibility begin? Where does it end? What is empathy, sympathy, pity? What is the seed of consciousness, or awareness? Quality of life? Living? Life?
Jerry has beautifully colored pictures on his bedroom walls.
“Jerry, You have company!”
Hey, how are you? Did you do all of those?
“Hello,” with a warm, soft hand. “Yes those are mine. Look at the mermaid.”
My daughter likes the mermaid, too.
“See, I did that one over there today.”
Splendid works of art, they are. Honestly. Markers, colored pencils, and crayons. The room was dark as we entered – he was just sitting there in his bed.
“I’m waiting for my TV show.”
The television wasn’t on, but his show would be, soon. And he stayed within the lines; lots of orange and red.
It was nice to meet you, Jerry.
“He goes to dances sometimes on Friday nights….”
Does he have a girlfriend? Does he have any ‘behaviors?’
“No, I don’t want to work in a home where there are behaviors. Everything is pretty quiet here. They like to go bowling and have pizza parties.”
Clean tile leads from one room to the next.
“Do you have to go pee?”
I am shielded by the attendant as Lowell’s tubby, white, naked body glides past us, scampering from his room to the john. It’s bedtime and the pajamas are on the footboard of the bed.
Sal is curled into a ball – thin, small frame just barely causing a ripple in the bedspread.
“He’s kinda sick right now, Aren’t you, Sal?”
He’s the oldest resident, in both senses. A sterile room.
Bye, Sal. I hope you get to feeling better.
Lowell is done in the bathroom and returns to his softly-lit room. Pointing to the end of the hallway, the attendant says, “That’s the girls’ room.”
The girls’ room. A bed, and a mattress on the floor. She can’t hurt herself if she falls out of bed, I think. No leather strap holding her in at night? The girls’ bedroom curtains are pink, if I remember correctly. The bleating has stopped. Gerilynn is in the dining-room, at the table, still waiting for a snack that she’s already had.
“I’ve been here two years, and she’s been with the company for almost what, seven months, a year?”
The third attendant was at the grocery store, shopping.
The kitchen is clean, all of the dishes are done and in their places.
And Lowell does his own laundry. It even says so in the thin, black binder that bears his name. His ‘plan.’
The washing machine is making a god-awful noise –
“I think it’s not balanced.”
Jerry has a thin, black binder, too. His says that he’s not supposed to watch too much TV. His was off. The pictures had lots of orange and red.
“Jerry used to have a girlfriend. They held hands at the dances.”
The washing machine is still unbalanced.
What kind of training do you get from the company; training that prepares you to work here?
“Oh, we do CPR, basic first-aid, you know, that kind of stuff.”
And what else?
“Oh, most of the rest of it you learn, here, you know, on the job.”
And what else?
“If one of them has a seizure that lasts for more than five minutes we’re supposed to call a supervisor.”
And what else?
“We give out meds.”
No, I mean what other training did you receive?
“Oh, I don’t know. Like I said, most of it is, like, on the job training, you know. You have to get to know the clients and then you know how to re-direct them.”
Lowell and I watched Melrose Place. The attendants watched it with us. Lowell had seen it before; I hadn’t. The state pays for Lowell to watch TV in the family room of his home. The state also pays for prisoners to watch TV in the prisons. What do we do with a population which is housed by the state? If the state begins to run out of money, which population do they stop paying for? Which population should the state ‘kick-out’ of their ‘home?’
As Lowell and I watched the show on TV, I tried to engage him in a conversation. In doing so, I looked at the note-pad that he was talking about, commenting on the numbers and letters that he had written. I then glanced down at the note-pad that I was carrying and remembered that there were things I needed to learn, or discover in my visit to the home. My notes were something like this:
‘Work’ – is it meaningful?
Are work related activities productive?
Etc. . . .
I looked at Lowell again and wondered what he would think of my notes. Would he want to be involved in anything that we consider ‘normal?’ And what would that mean anyway? Look at Melrose Place, is that normal? Look at me, thirty-some year old college student with car payments, four kids, and a second mortgage, is that normal? Or what about one of the attendants, a young person with her tongue pierced, is that normal? Who is wanting developmentally disabled persons to become, or to be normal? And why is that wished for, so we don’t feel bad ourselves? Do these individuals even know that they aren’t ‘normal?’
Should we see if you can change a tire? If we can get you a part-time job in a garage, or at a tire-store, will that mean anything to you, Lowell? Will you feel that you are contributing to society, or in some other way being ‘productive?’
If I take you home for the holidays, will that make you feel like a part of society? If you work at Taco Bell and have a savings account, will you feel normal, or will it make me feel that you’re normal?
I will offer that my experience with developmentally disabled individuals is severely limited. And, realizing that disabilities run the full spectrum from completely disabled to nearly fully-functioning, it would be improper to suggest that we should just keep the folks home where they are safe. I wonder, though, how ‘normalized’ an individual like Lowell is going to feel just because he can do his own laundry. Furthermore, does he even know what he is doing? Can he appreciate the concept of his clothes being ‘dirty’ and in need of washing? Or is this just something that will keep him occupied? I don’t know. If my experience with developmentally disabled individuals was more complete, that answer might be more clear to me.
Gerilynn was still waiting for her carrots; Jerry was still waiting for his TV program; Sal was still sick, curled-up like a ball in his bed – with blue curtains on the bedroom windows; Judy had ceased her plaintive crying and was asleep – dreaming? Lowell was still watching Melrose Place with the attendants when I finished my visit.
“Goodbye. Say ‘Goodbye,’ Lowell. Thanks for stopping by.
And I drove away.
Several years ago, I visited a neighbor’s house where one of the people had a ‘social disease.’ During those few minutes in the neighborhood, I noticed a house with a wheelchair-van in the driveway. I didn’t know the house was R-1 with AZTEC, a group-home for the developmentally disabled. Now I do.