During the 1960s, I worked in an institution in the Midwest. It contained 200 children and youth with developmental disabilities. I worked there for 11 years. I was the chaplain. I also served as a supervisor of clinical pastoral training. Ministers and priests came for quarterly and full year programs. They worked to better understand and support persons with disabilities.
I was completely loyal to the institution. I did everything I could to help make our congregate system the very best. My colleagues and I believed that ours was the “Number One” institution in the nation. (I learned later that the number of other institutions claiming to be Number One was awesome.)
Then one day I applied for a grant from the Rosemary Dybwad International Travel and Study Program. I sought money to support my attendance in Europe at an international think tank meeting on religion and mental retardation. I got the grant, but the think tank collapsed. So I had the money and no place to go. Then a colleague told me that something great was happening in Scandinavia, and a research scientist, Wolf Wolfensberger, had just returned from there. So I gave him a call. He invited me to come to Omaha for a number of “orientation days.”
Wolfensberger sat me down at a large round table in the Nebraska Psychiatric Institute. Then he dumped an armload of books and papers on the table. He pointed to a book with a blue cover fresh off the presses: Changing Patterns in Residential Services for the Mentally Retarded. It had been edited by Robert Kugel and Wolf Wolfensberger and published by the President's Committee on Mental Retardation. He told me to read this book first and to start with a chapter by someone named Bengt Nirje. I did what he said.
Right off, Nirje hit me with eight planks found in a piece called “The Principle of Normalization.” He hit me hard with those planks:
Plank One: Normalization means a normal rhythm of the day
The rhythm of the day at the institution where I worked was remarkably abnormal. All of our residents were dressed and fed before the 7 a.m. shift change. They were in bed by 8:30 in the evening.
Plank Two: Normalization implies a normal routine of life
People were meant to live in one place, go to another for school, and still others for work and recreation. In the institution where I worked, the sleeping, eating, learning, working, and recreating took place within the same enclosed compound.
Plank Three: Normalization means a normal rhythm of the year
Personal Holy days, holidays, and relaxation days should be respected. At my institution, special days such as Christmas, Easter, and Independence Day were seen as “skeleton crew days.” It was the staff members whose rhythm of the year was honored.
Plank Four: Normalization calls for normal developmental experiences of the life cycle
Our residents did not receive the touching and caressing that little children need. Later, they were denied the atmospheres in which adolescents normally thrive. Still later, they would not enjoy atmospheres adult and elderly persons usually receive.
Plank Five: Normalization calls for the valuing of individual choices
In my institution, the workers made all of the decisions. “No, John, I can't let you do that because if I did everyone else on the ward would want to do it.” “No, John, what you are asking is inappropriate.” In our institution, the watch words were:
I must take care of you.
I must protect you.
I must keep you safe.
I must keep you appropriate.
Plank Six: Normalization means living in a bisexual world
We were just beginning to pull out of the dark ages when this plank hit. How can I describe how an institution to the south of us had just begun to curtail the castration of males who masturbated? Or one to the north in which careworkers told teenage females that their menstruation was merely a bloody nose that went the wrong way? Or an institution to the east that argued over whether women should be sterilized before moving into the community? Or, how do I communicate that the boys and girls in our chapel services did not sit together? Periodically, the recreation department scheduled a Saturday night dance, but many staff members were pressed into action, too—watching the residents like hawks.
Plank Seven: Normalization means applying normal economic standards
We kept real money out of the hands of our residents. There were no savings accounts. Many institutions employed peonage labor systems in which the so-called higher functioning residents worked for little or nothing on large agricultural, livestock, and laundry efforts. Some even worked as full time caregivers with those having severe and profound disabilities.
Plank Eight: Normalization calls for living, learning, and recreating in facilities similar to those others in the community enjoy
My institution contained wards of 40 persons. In each ward one found a large room with 40 beds in two or three long rows, a day room with many benches, and an aide station in the center. At breakfast, lunch, and supper, the residents filled a large, noisy dining hall, very much like those Charles Dickens described in his novels. Also, the funerals of some of those I cared about took place with the undertaker at one end of the hole and me at the other. At that time it was deemed unprofessional for workers or other residents to attend the funerals of those they had cared for in life.
Nirje's planks shook my professional beliefs like wind that passed through broken shutters. Even so, I decided to go to Sweden and Denmark and test the planks for myself. Wolfensberger vigorously briefed me about what to expect in the two countries. He helped me to list all the things I needed to look for before I even left the United States. He helped me to compose an impressive list of questions that needed to be asked. I will never be able to thank him enough for the time and energy he took to help me prepare.
Next came my travel and study schedule from the two countries. I sensed that it had been thoughtfully but unmercifully created by Wolf Wolfensberger; Bengt Nirje, Secretary General of the Swedish Parents Association for Persons With Mental Retardation; Karl Grunewald, the head of the Swedish Mental Retardation Service; Niels Bank-Mikkelsen, the head of the Danish Mental Retardation Service; and Gunnar Dybwad, our number one international statesman on mental retardation in North America. That schedule passed me from one program after another throughout the north, south, east, and west of both countries.
As soon as I arrived in Stockholm, I met this bubbling Alka Seltzer named Bengt Nirje. He walked with a bounce. He waved his arms as he spoke. He was a walking carnival of fresh ideas. Wonderful pictures of the future flowed from one side of his brain and significant data came from the other. He could take a seemingly small issue, hold it out, turn it around, and expand on it as if he held a valued gem in his hands. I loved traveling and listening to him.
I learned something else about Nirje. He was a poet and a translator of poets into the English language. Then, I suddenly knew why his eight planks hit me so hard. The planks leaned toward the poetic. I think that with a little more work they could have been put to music. For example, I took four lines from the musical Les Miserables (Boublil & Schonberg, 1985) and almost infused them into my blood stream:
Do you hear the people sing?
Singing the songs of angry men?
It is the music of a people
Who will not be slaves again!
Nirje's planks struck rich chords in me like that, making me want to read them again and again. All across the two nations, I found others who received the planks and loved to talk about them like I did. For a while, I self-consciously wondered if my being a pastor might hamper our clean and simple Nirjean communications. It happened only once, but it lasted for only a brief period.
At 8:00 a.m. Friday morning, November 19, 1969, I appeared at Lillemosegard, the flagship center for persons with developmental disabilities in Copenhagen. I first met with Dr. Sheel Thompson, the assistant director.
“What is your profession?” Dr. Thompson asked me.
“I am a minister and I train ministers in America how to understand and support persons with mental retardation.”
Dr. Thompson smiled, picked up the telephone and canceled all of my scheduled appointments. “I want to take you around Lillemosegard myself.” He said.
I felt honored.
Right from the start, the two of us achieved a remarkable closeness. Our common eight-plank language worked perfectly. He gladly described his favorite programmatic breakthroughs and gladly answered every question I asked.
Then came noon. I was scheduled to be at another service called Karns Minde by 1:00.
“We've changed your schedule,” Dr. Thompson said. “You will be our special guest for lunch.”
I felt honored again.
The lunch turned out to be much more than I expected. Although it happened in the middle of the day, I attended an elaborate candlelight affair with all of Lillemosegard's division chiefs. There were three kinds of wine—poured at different times—a three-course dinner, and 2 hours of rich conversation. I was utterly amazed by such graciousness.
When it was over, the chief of social workers offered to take me to Karns Mind and get me back on schedule. We got in her car.
Then as we drove down the road, the social worker said, “By the way, Mr. Perske, what department in America do you direct as a minister?”
It suddenly dawned on me what had just gone on. My response was flustered and quick. “I'm not a government minister,” I said. “I'm a pastor. I'm a religious minister.”
Then a wry smile appeared on the face of the social worker. I knew she could hardly wait to get back and tell the others what they had just done.
But do you know what? I crossed the paths of many of these leaders again and again. When we spied each other we laughed—and then we went right on talking enthusiastically about the enlightening power of Normalization.
Later, I took a job in Nebraska. I went there because the leaders and workers of Nebraska saw fit to develop a vivid information-exchanging partnership with those in Sweden and Denmark. Interestingly, Robert Schalock and David Braddock just edited a book on this Nebraska experience:. Out of the Darkness and Into the Light: Nebraska's Experience With Mental Retardation (2002), published by the American Association on Mental Retardation (AAMR). Read this book and you will get a feel for how citizens and professionals from all walks of life began to think and sound like the Swedes and Danes did regarding persons with retardation.
A person does not need a training course or a degree in order to understand Nirje's planks. They were so easy to understand, so unifying, and so energizing that they became a common language all parents, workers, and department heads carried in their hearts.
At first, it was almost overwhelming. Almost every prestigious and well-established professor or politician criticized normalization as a craziness developed by wild-eyed radicals. After all, our English dictionaries defined normalization as “to make normal.” We, of course, never dreamed of making people normal. We only wanted the settings to be as normal as possible.
Through the years, many groups worked to redefine the definition of the principle of normalization. I never became too interested in these efforts. The eight planks were all I needed for my personal enlightenment and action.
Many young people were suddenly attracted to this field. It may have happened because of the clear, easy-to-grasp planks. Or maybe it was just a time in history when the hearts of some young people went out big time to persons with disabilities. During my travels in Sweden and Denmark, young people became involved in many facets of the normalization movement. Back in Nebraska in 1973, I learned that the 700 employees of the Eastern Nebraska Community Office on Retardation (ENCOR)—the service system in and around Omaha—were remarkably young. The average age was 22.5 years.
Out of the Darkness and Into the Light
The contrast between earlier views and the new ones was indeed as different as day and night. Television station KETV in Omaha picked up this vivid difference and repeatedly used the words as a theme when reporting on the conditions of persons we served. Consequently, many of us who worked with persons having developmental disabilities made it our personal slogan.
Dignity of Risk
The utter lack of choice in the old way of seeing things was so different from Nirje's fifth plank, it was easy to extract from my journals an exciting list of choices—even risky ones—persons in Sweden were being helped to make. These fresh Scandinavian experiences gave rise to my article “The Dignity of Risk” (Perske, 1972).
A Fresh Sensitivity
The planks made me feel the need to get closer to some of the persons I worked with in a human way. Doing that, however, served as a slap in the face of the “objective professionalism” we were trained earlier to observe. For example, I had a hard time on holidays such as Christmas and Thanksgiving. In the morning I went to the institution, walked onto every ward, shook hands with every resident, and called him or her by name. Only after that could I go home and enjoy celebrating with my family. From that time on, I have insisted on being warmly connected personally with some of those I work with and care about. Consequently, I am now a self-styled citizen advocate. I now do it by befriending persons with developmental disabilities who are in prisons.
Others may have seen the situation differently. For me, however, it was Nirje's eight planks that lit the way. Think about this. If we predicted in 1969, almost 34 years ago, that by 2004 many of those we care about would be
Seen moving almost everywhere in our neighborhoods
Supported in regular homes and apartments
Going to their own neighborhood schools
Working in regular industries
Supported by neighbors and citizen advocates
Worshipping God in regular churches, synagogues, and mosques
Learning to be self-determined self-advocates
Cheering for their favorite local athletic teams
More loved and valued by others
Enjoying meals with others in restaurants and at picnics
Adding zest to a neighborhood because they live there.
And indirectly, but most powerfully, helping the highest court of our land to discover a higher standard of decency for the people we work with and care about.
If any of us predicted all these things before learning about Nirje's planks back in 1969, others would have called us mad. I think Nirje's eight planks provided us with the first light that led to these milestones. For me, this first light came from Sweden and from one of their cherished sons, Bengt Nirje. For that, I will love Sweden and Nirje until I die because of what they did for me.
Author: Robert Perske, Citizen Advocate and Author, 159 Hollow Tree Ridge Rd., Darien, CT 06820. Rperske@aol.com