Updated: May 11, 2021
Lessons learned the hard way are painful, but the lessons stick. I was lucky enough to learn some lasting lessons in my second year as a speech-language pathologist.
I had all the education and tools I needed for working with my clients, adults with significant cognitive disabilities. At least I thought I did until I met Steven Duffy.
We called him Steven or Mr. Duffy, never Steve or Stevie. With a sly half-smile, he strolled into a room like a miniature John Wayne. When he looked toward the ceiling out of the corner of his eye and made whisper-like sounds with his lips, it made you wonder what he was saying about you.
We both worked at an adult activity center. I was staff, Steven was a worker. His day included work periods in our basement workshop, plus education and leisure groups for learning life skills. I held small-group and individual sessions teaching functional communication.
We didn’t know a lot about Steven’s background. He’d grown up on a farm at a time when most children with Down Syndrome were sent to live at the Northern Colony and Training School. When his parents passed away, that’s where Steven went.
Big changes came when the deinstitutionalization movement came to the state in the late 1970’s. The facility name was changed to the Northern Wisconsin Center for the Developmentally Disabled and David was moved into the community.
Supported living placements, however, were slow to meet the demand from the influx of new residents. This 34-year old man ended up with his very own room in a small, rural nursing home.
Steven rode a van 25 miles to work every day. He preferred the workshop, where he proudly and methodically worked on package assembly and recycling tasks. He was a star at cutting knots from baling twine. The circular saw made a satisfying zing! when he slid a piece of twine into the jig. He carefully dropped the knot into the trash and laid the twine in the recycling basket.
Some days I had to fetch Steven from the workshop when it was time for our session. He’d be over in the corner— zing, zing! When I called his name, he glanced my way then returned intently to his work. Steven headed right to the door, though, when Jim, the workshop supervisor, told him to go with me.
A couple times, Steven went ahead of me as we walked upstairs. As we approached my room, he suddenly sped up and took off out the door at the end of the hall and headed behind the building. I tried to look as dignified as possible as I stalked after him, knowing that Jim was probably watching our feet go by the row of basement windows that looked out the workshop.
Our program director instructed staff to help Steven “break” a habit that she felt made him look unusual. Back in the day, this was called normalization. Actually, normalization was supposed to be helping people have regular life experiences in the community, but it was often applied in a way that meant making the person look and act more “normal.”
Steven loved to collect paper. He’d slowly slide any page or scrap off a table and slip it into the pockets of his baggy corduroy pants. Stuffed with paper, his thighs bulged like Popeye on a spinach overdose.
Every morning the director had Steven come into the office to empty his pockets of his stash from the nursing home. They must have had a good supply of magazines at that place. He put the papers on her desk and she threw them into the trash. Sometimes he left some in his pocket, so she emptied his pockets for him.
Since he didn’t speak, I was teaching Steven sign language. I never tried to explain to him what we were doing during our sessions three times a week, or why. I’d show him a picture and demonstrate the sign, then he would slowly and dramatically imitate the sign. I was getting high rates of responding in my daily charts, just like I’d learned in my advanced behavioral psychology courses.
We used pictures from a collection I’d made for a class on teaching English as a second language. I’d collected the pictures from magazines, a state-of-the-art method in foreign language teaching at that time. Can you see where this is headed?
Yes, Steven liked my pictures. He coveted those pictures. He’d look me in the eye and make his whispery sound, slowly moving a picture toward the edge of the table. I’d tell him, “Put it back, Steven.” He’d slide it back.
He tried a new tactic as he walked to his side of the table one day, quickly snatching a nearby picture and stuffing it into his pocket. I couldn’t let him keep the picture—that would reinforce the behavior and he would try it more in the future. I had to get the paper back.
Steven had other plans. I firmly told him, “Give it back, Steven,” but he stood with his hand jammed in his pocket and whispered up at the ceiling. I reached for his pocket and he turned sideways to block me. Steven bent below me as I loomed over him and reached my arms around him. Then I heard a quiet, gruff voice say, “Help!”
I stepped back and asked, “What did you say, Steven?” He didn’t say anything more. I don’t remember how our lesson went from there. I do know it was the day I started thinking about why I might be underestimating my clients.
That wasn’t the big lesson Steven taught me, though. That came a week later.
On that sunny day the crisp air carried the scent of dried leaves. The workshop crew was outside doing those tasks that come with the fall. Two workers were carrying a glass storm window from a stack that leaned against the storage shed. Jim was up on a ladder removing the screens and hanging the storms.
Steven was raking leaves with a flourish. He hadn’t collected a lot of leaves, but he was doing a man’s job. I knew I’d have to let him know who was in charge as I approached him and directed, “Put the rake away, Steven. It’s time to go in for speech.”
Steven dropped the rake and took three determined strides to the storage shed. Looking me square in the eye, he leaned over and shoved his open hands through the glass pane of a storm window.
Looking back, I imagine Steven thinking, “Good Lord, woman! What do I have to do to get through to you?”
That’s what he might have been thinking before his hands went through the glass. When he stood up and looked at his hands, it was probably more like, “What have I done?”
Blood ran from a gash in the fleshy part of Steven’s left palm and dripped steadily onto the leaves at his feet. He stood stunned as I rushed to help him.
I called to Jim to tell him what happened as Steven and I hurried indoors. After first aid from the office manager, my boss determined I would drive Steven to the emergency room for stitches.
On the ride, I apologized to Steven as he sat quietly looking at his bandaged hand. His swagger was gone as we walked into the emergency room, but he stoically watched the procedures as the doctor injected him with a local anesthetic and gave him 12 stitches.
So it was Steven who endured the pain for the hard lessons I learned that day. What I learned has been reflected in my practice every day since then.
I believe Steven was shouting at me, “Treat me like a human being!” He did not need to be trained. He wanted to be treated like an equal, with the kind of respect you would show a coworker.
Our sessions continued, but with a new focus. Steven’s first lesson for me was that he didn’t need to learn my list of vocabulary words. He needed to have interesting things to talk about and people who wanted to share those topics with him. I tried to think of reasons Steven would want to use signs to communicate.
Sometimes we used the kitchen to prepare food. One time Jim practiced signs with us so Steven could request a job or speak up when he needed more supplies. Our favorite activity was when I’d take him in my car and he could tell me where to turn as we explored a neighborhood. We went to the public library, where he made a photocopy of his hand that he discussed with the office manager when we got back.
Steven wanted to have some control over his life. Most of his coworkers had grown up in settings where compliance was a top priority, so they had lost lost that attitude of independence. I learned to focus more on helping my clients be independent and self-directed, which involved more than teaching them what to say. Steven’s second lesson for me was that feelings and attitudes, even though they are not observable behaviors, are important factors in human learning.
The third and biggest lesson Steven taught me was that communication is based on relationships. With Jim, he eagerly followed directions, stayed on task and learned new skills. When he did those things with me, it was because I coerced him with my authority and food reinforcers. I didn’t actually communicate with Steven until after I acknowledged his humanity. Then we could establish a relationship and communicate about ideas.
I didn’t abandon the behavioral principles I’d learned in school, but I put them in their proper place. Teaching performance skills goes faster with the skilled use of tools like prompting, shaping and reinforcement. But humans learn to communicate because they want to share a relationship with other humans. The coercive nature of ABA-type behavioral programs is unbalanced, not a shared relationship.
The drive to interact is wired into our brains. We start to connect with others from the day we’re born. These back-and-forth, Serve and Return interactions build the foundation for language and thinking. Our reasons for human interaction must be at the core of all our teaching, or the skills we’re teaching won’t be used effectively.
I was lucky to have a teacher like Steven early in my career. His lessons have made a difference for hundreds of my clients over the years.