Robert Perske, “The Dignity of Risk and the Mentally Retarded,” 1972

Robert Perske, “The Dignity of Risk and the Mentally Retarded,” Mental Retardation 10, no. 1 (February 1972):24-27.

Complete original source available here.

Robert Perske had a career in pastoral counseling before he became Executive Director of Greater Omaha Association for Retarded Children. He was inspired by the normalization ideal championed by Wolf Wolfensberger and by a trip to Sweden and Denmark, where he witnessed reforms in the lives of developmentally disabled individuals that he believed should be tried in the United States. In arguing that the logic of integration should apply not only to housing, recreation, and employment but to risk itself, Perske went further than many of his peers. His argument against “over-protection” revealed the potential of normalization to transform human lives and, at the same time, suggested why it would be so difficult to implement. Safety and protection were principles that had long guided human services for children and adults with mental retardation. To deliberately expose those same individuals to risks in the name of equality and autonomy was to propose something radical.

Robert Perske (courtesy of Martha Perske)

Risk and the Retarded

 …Many who have worked in the field of retardation for any length of time are aware of the clever ways in which virtually total avoidance of risk has been built into the lives of the mentally retarded by limiting their spheres of behavior and interactions in the community, jobs, recreation, relationships with the opposite sex, etc. Even buildings constructed for the benefit of the retarded are designed to help the residents avoid risk. Fortunately, there is a growing awareness of these facts, and many beginning efforts are being made in America to allow the retarded to assume a fair and prudent share of risk, commensurate with their functioning.

Scandinavia’s Attitudes Toward Risk and the Mentally Retarded

….In this paper, the author will present first-hand observations of incidents where workers in these two countries [Denmark and Sweden] allowed their retarded to experience a reasonable amount of risk. It is hoped that these incidents will illuminate and clarify the directions and attitudes Americans may choose to take in the future.

Programming Risk-Taking Experiences in Scandinavia

Some Scandinavian workers with the retarded are developing innovative ideas to literally “push the retarded out of the nest” as a means of finding new growth. Such experiences in a number of areas of living are illustrated below.

Normal Risk in Community Experiences

Bengt Nirje, the secretary general (Executive Director) of the Swedish Association for Retarded Children, has formed youth clubs in Stockholm, where both college students and mentally retarded youths serve as co-members. In 4 years, the first Flamslattsklub has grown into 21 clubs. Kept to approximately 20 members each, these clubs plan a wide range of recreational and educational activities. To be a member in full standing, a retarded person must first learn to find his own way from his home to the clubroom in the center of downtown Stockholm.

Nirje has attempted to build into each club “hidden social training.” Members are required to do for themselves what they have never done before. For example, a group may travel for a special program to a section of Stockholm where they have never been before. When the program is over, they are expected to find their way home alone, even though this involves the struggle of asking questions of strangers, getting one’s own direction, finding the right bus or subway, etc. At another time, a day’s outing at a particular amusement area may he planned; then the leaders may be “called away,” leaving the retarded persons to entertain themselves….

Normal Risk in Industry

…To reshape a task that might be performed by an ordinary industrial worker, solely because a retarded worker is to perform it, is dehumanizing if the retarded worker is capable of performing the same task on the same equipment as safely and/or as well as the industrial worker….

Throughout these two countries, retarded persons were seen operating heavy-duty punch presses, drills, and saws, while they did simple repetitive operations on a Volvo automobile fender, on brass fittings, or on Danish modern furniture, to name only a few. It was noticed that the risks these persons took were normal for industry in these countries.

In Örebro, the Frykstagarden workshop contains a work force of 15 deaf, mentally retarded adolescents and young men who turn out routine machined items on heavy-duty lathes. Their foreman felt the need to tell me, “That’s not easy, you know. A regular worker can hear when the machinery is going to break and fly in his face. These people can’t hear. So, I teach them to watch things with an alert eye.”

There was enough danger here to put great fear in the heart of any worker with the mentally retarded who tended to be over-protective; but the foremen of these workshops expected their workers to be safe. For the most part, these persons lived up to the expectations of the leaders. It could be conjectured that there would have been tragic consequences if the foremen expected the retarded workers to get hurt.

Normal Risk in Heterosexual Relationships

In healthy human beings’ attempts to build close, creative human relationships, there is always a risk and a chance for failure and pain. We have yet to completely evaluate what we do to the human dignity of a mentally retarded person when such relationships are denied. Now we are beginning to wonder about our “safe” segregation of men and women—sometimes for life.

Bö works in an assembly line for TV terminal strips at the Frykstagarden workshop in Örebro. Approximately 26 years of age, he suffers from spastic paralysis, but has an ingenious way of putting metal pieces into plastic parts using a vise (others can do the same operation much more readily with a hammer). Marie, age 21, works elsewhere in the line; she is spastic also. Bö and Marie look forward to being together in the lunchroom. The social worker pointed them out, saying “they’re in love.” Slowly these two persons, with professional help, were working out plans for the day when they could live together and make a closer relationship. Because of the spasticity of both of these persons, sex could hardly be a very large issue, but there seemed to be so many other creative possibilities between them. It was obvious that everyone respected these two and their attempt to find one another….

Throughout Denmark and Sweden, there seems to be a movement away from segregated dormitories for men and women. Instead, the tender, patient, sensitive building of closer human relationships under supervision was observed in many areas of both countries. The healthy, carefully evolved decisions of these retarded persons were honored and regarded by the helping professionals as being within the limits of normal human risk.

Normal Risk in Building Design

For years, in both Scandinavia and the United States, when architects were contracted to build a facility for the mentally retarded, they automatically drew up plans for a “heavy duty” and a “super-safe” facility. In both countries, the building codes have reinforced this attitude. Now there seems to be a struggle to change….

New institutions for the mentally retarded are being constructed more and more the way homes for normal, happy human beings are constructed. They are being designed with plenty of glass, many doors to the outside, and lots of brightly colored fixtures and furniture. Beautiful hanging lamps can be seen everywhere, and nobody seems to swing from them, because it is expected that no one will. This new architecture is saying some powerfully hopeful things to and about human beings who happen to be mentally retarded….

We “say something” to the mentally retarded persons who live in the building that we build for them. We can say “We will protect you and comfort you and watch you like a hawk!” Or we can say, “You are a human being and so you have the right to live as other humans live, even to the point where we will not take all dangers of human life from you.”

Is the Scandinavian Attitude Applicable to the American Scene?

….It would be valuable for Americans to watch the hopeful struggle in which the Scandinavians are involved, focus on their attitudes, and see which would be compatible with healthy American life and which would not. We cannot continue the type of over-protection we usually give the mentally retarded in our country.

The world in which we live is not always safe, secure, and predictable. It does not always say “please” or “excuse me.” Everyday there is a possibility of being thrown up against a situation where we may have to risk everything, even our lives. This is the real world. We must work to develop every human resource within us in order to prepare for these days. To deny any retarded person his fair share of risk experiences is to further cripple him for healthy living. Mentally retarded persons may, can, will, and should respond to risk with full human dignity and courage.

…. It is hoped that this paper has helped to illustrate that there can be such a thing as human dignity in risk, and there can be a dehumanizing indignity in safety!

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