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A Quarter-Century of Normalization and Social Role Valorization

 | 
Robert J. Flynn
, 
Raymond Lemay

Part 2: Historical Evolution of Normalization and Social Role Valorization Theory

4. The North American formulation of the principle of Normalization

Jack Yates

Texte intégral

1 INTRODUCTION

1Bengt Nirje (chapter 2) and Wolf Wolfensberger (chapter 3) presented the historical and conceptual evolution of the principle of Normalization. My assignment from the editors is more narrow, essentially to offer a systematic presentation of the North American (i.e., Wolfensberger’s) formulation of the principle, as it would have been presented circa 1975. Immerse yourselves, then, in the social and human service milieu of 1975, and we will examine this (at the time relatively new) principle to guide our work.

2 DEVALUATION: WHAT IS PEOPLE’S PROBLEM?

2How we define a person’s problem has clear implications for how we might go about trying to solve it or address it. To oversimplify, let’s look at that in two different ways. What happens if we define the problem within the person? For instance, we might look upon the inability to walk or the lack of intellectual or verbal quickness as indicating such problems. We might define the problem within the person because of his or her recurrent outbursts of violent behavior. The problem within the person may be an inability to speak.

3If the problem is essentially within the person, then the human service response would need to be an attempt to change the person.

4That sounds a bit overbearing or condescending to say it that way. But changing a person could take a nicer sounding form: rehabilitation, education—change the person. That’s where the problem is.

5But suppose we define the problem in a different way. Suppose the essence of the problem is in the context around a person and in the interaction of the person with that context. If that were the case, then our human service response would need to be an attempt to change the context, in addition to or instead of changing the person.

6To take that second way of defining the problem in the context and the person’s interaction with the context, to take that into more of the language of sociology, then we might say that in any society, it seems, some people are cast into devalued or deviant roles.

7“Deviant” was a word that I didn’t run into until I went to a Normalization presentation; it’s a word from another field, not having necessarily the sexually charged connotation that we might find in popular usage. Many groups in American society might be perceived as deviant, having been cast into devalued roles by others or by the dominant society.

8Those groups have different things going on inside; but we are saying that that is not the essence of their problem. The essence is that they have been cast into devalued roles. That deviancy might be defined as being different from others in one or more dimensions, with those dimensions perceived as significant by others, and with that difference valued negatively by others.

9Such a definition of the problem has its implications for what we will need to do, then, to address or to try and solve the problem. If deviancy is, as in that definition, socially and also subjectively and variably defined, then deviancy or devaluation is relative. That is, a particular characteristic of a person, something that may be true inside, of the person’s appearance or behavior, might be perceived negatively in one society but not in another. A characteristic might be perceived negatively, therefore enabling others to cast the person into a deviant role in one era of a certain society and yet not in others. An example of that relative nature of devaluation that is to me the clearest and the most overwhelming is that the idea that there might be such a thing as segregated housing for people because they are elderly had never been conceived in human history until our lifetime. Devaluation, we note, varies over time and varies from place to place, from society to society, depending on what is highly valued and therefore, by implication, what is devalued. Now, if deviancy is subjectively defined, existing subjectively in the eyes of the perceiver, or beholder, then it follows that there could be two major avenues toward attempting to reduce or eliminate deviancy or devaluation. First, we could work with that person who has been cast into deviant roles to minimize the stigmata of deviancy. We might ask, what is it that we could do with or for that person? But then, deviancy being in the eyes of the beholder, it could also be reduced or eliminated by changing the perceptions or the values of the beholder, the perceptions or values of the person who is doing the casting into deviant roles.

3 THE PRINCIPLE OF NORMALIZATION AS A RESPONSE TO DEVALUATION: DEFINITIONS

10In 1972, Wolf Wolfensberger took those two ways of responding and expressed them as a principle with a definition. One way in which Wolfensberger defined the principle of Normalization is to say it is the use of culturally normative means (techniques, methods, tools) to enable people’s life conditions (income, housing, jobs, recreation) to be at least as good as those of average citizens. Culturally normative is not used here to mean the average, the normal, the mean, but rather, in the sense of a range of what’s broadly accepted, a range of what is expectable and ordinary, where people would not raise their eyebrows to encounter. Moreover, culturally normative means would be called into play to, as much as possible, enhance and support people’s behavior, appearance, experiences, status and reputation, in their own eyes and in the eyes of others.

11An alternative way in which Wolfensberger defines the principle of Normalization is the utilization of means that are as culturally normative as possible in order to establish, enable, or support behaviors, appearances, and interpretations that themselves are as culturally normative as possible.

4 THE CONSERVATISM COROLLARY

12If a person is, or is in danger of being, devalued by others, then we might even work toward the upper end of that range, maybe a little better than “okay.” The principle of Normalization implies we work toward what is normative but also toward what is the most highly valued, the most enhancing options. Formally, that implication is termed the “conservatism corollary.” More informally, one might try to explain the conservatism corollary as the “bend-over-backward” corollary. Let me explain.

13Most people have some characteristics that are devalued in some ways. A person may have some little impairment of functioning, or some way in which the person is not at the top of society’s expectations. Many or most people are, you might say in sociological language, deviant in few and minor ways. Not necessarily hindered in functioning, not necessarily different in such a way as to be cast into a devalued role that becomes life-defining, no. But as the personal characteristics perceived by others in a significantly, negatively, different way increase in number or severity or variety, they will tend to have a multiplicative effect. Negative perceptions tend to accumulate: that one characteristic that other people devalue about a person will tend to make the next thing have even more weight than it would without the first having been there. Even more than a cumulative impact, adding negatively valued characteristics will have a multiplicative effect on the person who is in danger of being devalued. Therefore, what might for you or me or any valued person in society be an irritation or a minor setback, for a person in danger of being cast into a devalued role in life-defining ways, that same event or occurrence might be devastating to his or her whole life.

14For instance, losing a job is no fun and not particularly valuing for anyone; but if you are a person defined by others as incompetent, the impact of losing a job for you may be that most of the world is telling you, don’t even try it again.

15If a person is in danger of being cast in life-defining ways into devalued roles, then unluckily that means that adding one more deviant characteristic, or characteristic others are ready to see as deviant, may send the person down a negative spiral. And yet luckily, if a person is in danger of being cast into a devalued role in a life-defining way, the conservative corollary would also imply that it becomes even more impactful to reduce one of those stigmata; similarly, it becomes even more impactful to balance that negatively perceived characteristic by something that is especially enhancing, the positive end of the continuum of what is expected, what is in the range of predictable and ordinary. The conservatism corollary would advise us to choose the most enhancing option.

16Usually, we would have a range of what one might be able to provide for a person or present to that person as an option from which to choose: a range of options, a range of possibilities. The conservatism corollary would imply that we try to provide the most enhancing, not just the average or the ordinary. If somebody is in danger of being seen or stereotyped in negative ways, then we must bend over backward to avoid adding one more deviancy, and bend over backward to provide positive compensation.

5 EXPLORING THE IMPLICATIONS OF NORMALIZATION: TWO DIMENSIONS AND THREE LEVELS

17So we have two definitions of the principle of Normalization, two slightly different definitions. What would it mean to follow that principle? What would we need to do in practice? Well, we could follow the implications of the principle of Normalization by looking at what might be our practices, looking at what we might do with and for people who are in danger of being cast into deviant roles. We will explore the implications of the principle of Normalization conceptually by looking at our practices through two dimensions and three levels.

18The first of the two dimensions of the principle of Normalization would have us ask, what can we do in the way of interaction? What should I do if I have a role to play in somebody’s life and that person is in danger of being cast into a deviant role? How should I act with that person, what direct impact can I have on her or him? And then the second dimension of the principle, besides interaction, would be to ask, what can we do in the way of interpretations? What kinds of messages are sent about a person consciously, or even unconsciously, and how can we influence those too? Interaction dimension: How do I act with a person? Interpretation dimension: How do I act to surround a person with positive interpretations, instead of negative?

19Those two dimensions then can be enacted at three levels. What can we do at the level of the person? What can we do at the level of the primary and intermediate social systems that surround that person (family, program, neighborhood), and what can we do at the level of society to make those two kinds of changes?

20First, at the level of the person and in the dimension of interaction, what can a person do directly with and for another person? What can we do to help that person in their health and in their health habits? What can we do to help that person to gain very practical skills? What can we do to help that person to learn? What can we do to help that person to learn not only things that you can take a test about, but what can we do to help a person to learn how to act, how to be, how to be with other people? What can we do to help that person to have more richness in his or her life, activity, recreation, work, and job opportunities? What can we do to help that person to see him or herself in a more positive way, enhance his or her self-image and awareness? What can we do to help a person to gain not only the skills but perhaps also the habits and the inclinations that will make him or her a more powerful participant among other people, by self-mastery and discipline and courage? What can we do to try to provide directly with and for that person the kind of security that will make a difference for any of us, as to what kind of life we will live and how we will feel about it as we live it? The dimension of interaction at the level of the person proposes many ways we can enrich and fulfill a person’s life directly:

21Normalization would also ask us to look at the level of the person in the dimension of interpretation. In other words, we should examine the ways in which we might help a person to be interpreted well to other people, to the eyes of the perceivers. For instance, we might want to look at what we call people. What do we say to people, what do we say about people, particularly about people who are in danger of being devalued? How might we help a person to present himself or herself in ways that will make it just that much more likely that someone will accept him or her and will extend a welcome? We will count in that person’s life if we can help him or her to come across positively, even in such superficial things as personal appearance. We might be tempted to say that those perceivers, those beholders, should not be judging a person by first impressions. Well, no, they shouldn’t, I agree. And yet, sometimes people do. We can lament and complain about that, or we can try to help a person to come across more positively, more enhancingly. Further, what can we do to provide a person with valued work? Not only so that it will enrich and fulfill his or her life, on the interaction dimension, but it will also help that person to come across better to others because he or she will be filling a valued work role and perhaps enabled to fill other valued roles in life. That will change the views of the perceivers too. How can we allow reasonable risk, not only because we learn by it and the person at risk of devaluation learns by it, but also to allow and encourage challenge and risk in a person’s life because that, too, will change the way that other people look at that person.

22Normalization would ask us not only to work with and on behalf of a person at the level of the person, but it would next have us ask, what can we do in that person’s life and in the interpretation of that person, by the changes we might make in the person’s primary and intermediate social systems? How might we change the context, not only change the person? What can we do, in other words, that works directly with those primary and intermediate social systems by, for instance, dispersal of groups as opposed to the segregation and congregation of people who (I guess the old idea ran) must belong “with their own kind”? How might we present alternatives in the way that we design programs? How might we especially try to work toward the valued social participation of people who have been for too long excluded from community and society? Full integration at work, integration in one’s residence, integration in education? Why would that be important? The principle of Normalization asks us to think about that along the dimension of interaction because it makes a difference to the person we have in mind.

23There are some things in our lives that we have learned by formal instruction: people stood up and delivered lectures; our teachers in high school taught us things. Here’s an example. Once upon a time I learned, and most of you all learned, what is the capital of Colorado. You learned it, I learned it, you know it. What is the capital of South Dakota? You probably learned that one too, and you probably got it right on a test. How did you learn that? You learned that by formal instruction, and we learn a lot of things that way. It is a valuable thing in life to be able to learn that way: We read books, we hear lectures, we read blackboards, we read handouts at presentations, we learn by formal instruction. But, there are a lot of other things in our lives that we did not learn by formal instruction. For instance, whether you know the capital of Colorado or not, I can see just by looking at you that you all know how to dress presentably for an evening presentation at a conference. Now, that is something you also had to learn. You weren’t born knowing how to dress presentably, and you probably didn’t get formal instructions about it. By how to dress, I don’t mean how to do buttons or zippers. I mean, what is presentable. What is okay. What is within the range of things that won’t get people staring at you and saying you look weird. How did you learn that? Never read it in a book. Never had a course. Never took a class. There are a lot of things in life—just how to act, how to be, how to be more or less presentable most of the time—things in life that we learn just by being around other people. We pick them up from other people. And how would we have learned those things had we been segregated, forced to spend all our time with people who didn’t know those things? Social integration or valued social participation, then, would have an impact on a person by creating a context around him or her that includes people who know those things already. To be surrounded by ordinary valued people who have those ordinary competencies would make a difference in a person’s life.

24We could work also at the level of the primary and intermediate social systems in a person’s life to use the kinds of settings and services that are used by everyone. We should enable and assist people to use settings that are part of our communities, that are not for a specific group labeled by age, not for a group of people labeled by disability. They are for everyone, generic. We need also to look at the ways in which what we do within programs becomes part of the context around a person: How is that programmatic context supportive to a person by being demanding, challenging? How is the context supportive to a person by being age-and culture-appropriate? How does the context make it likely to help a person learn not only the formal skills you could take a test on, but also to learn how to act, how to be, how to make social acceptance more likely?

25The principle of Normalization would also imply that we work at the level of the primary and intermediate social systems along the dimension of interpretation. We need to ask of service settings, for instance, that they be in a place that you would expect them to be, normative locations. We need to ask that service settings look about the way you might expect them to look for you and me, for anyone; in other words, we should arrange and design normative program appearances and facilities. About a residential service, we would ask, indoor, outdoor, what does it look like? Does it look like a home for you or me, for ordinary citizens? That would count for the way that we interpret the people who live there. We need to describe people in enhancing ways, and we also need to refer to the places where people go and are served, and the programs that serve people, in enhancing ways instead of devaluing ways. We should group people in ways that send a positive message about who they are, valued in the eyes of the perceiver. We can get mad at the perceivers for not accepting people, but we can also try to influence how those perceptions occur, the interpretations that are affected at this intermediate level of the context around a person.

26The principle of Normalization would ask us to look at another dimension, at another level: How is it that we might work at the level of changing society, through the dimension of interacting with society? So Normalization would ask what might we do to structure not only a program, but that broader context of a social service system into the kinds of patterns and governance that will give people continuity in their experience and breadth of opportunity through their human service experience. How can we affect also the ways that people are hired and then the ways that people are trained to try to offer those supports at the systems and the societal level so that supports will be most enhancing to their competence, richness of life, relationships? How can we influence legislation that will, in turn, have influence on the lives of people that we care about? How can we interact with the key institutions of society to make a difference in people’s lives? Then, too, we need to work at the level of society, but through the dimension of interpretation. What kinds of messages can we send about people, perhaps even people in broad groups, to the whole society? How can we shape societal attitudes to accept groups of people who are in danger of being cast into deviant roles? How can we broaden the public’s definitions of who is okay, who is acceptable, who is welcome, who is included? How can we interpret people positively by public education? How can we interpret people positively by how programs and systems operate and by what they are called, by program terms, and by nonstigmatized funding? And how can we interpret people positively, too, by setting examples that a whole society might see of how people might be with one another?

6 SOCIAL INTEGRATION

27Now we’ll go back to the question I asked a few minutes ago about how we learned the capital of Colorado and about what difference it makes to people if they have been segregated. Well, it limits their learning directly, how they will learn how to be among people. But there is another problem with segregation, and therefore another kind of importance to social integration as an implication of the principle of Normalization. That is, what difference does social integration make in the eyes of the perceiver? Maybe not only the eyes; maybe we should ask also, what difference does social integration make in the minds and the hearts and even the souls of the perceivers?

28We are taking ourselves back to a presentation of the North American formulation of the principle of Normalization as of 1975, so it seems appropriate to share with you a short story from 1975, in which we visited an early-childhood education program in Syracuse, New York, the First Baptist Church Child Development Center. It was not a typical place to visit for a human service training group like a PASS team, in that where we visited was not set up for people who had a certain label; it was set up generically for anyone who was 3, 4, or 5 years old in Syracuse. Something that we had as a special focus as a visiting training team, however, was that two of those students, out of the 32, were youngsters who were visibly handicapped in some way. I remember meeting Angela and Billy.

29Angela was a youngster who could not walk, and people were working with her on that. She had some adaptive equipment she was strengthening her leg muscles. She had had surgery too, and it was hoped that she might soon learn to walk. But at the moment that we went there to visit, Angela could not walk. This is a story about the impact of social integration on Angela: It was a good place for her to be. Why? Because she could learn from the other students. She could learn what it was like to be a 4-year-old, which she probably would not have gotten from a book or from a teacher. She could learn that only by being among a variety of other 4-year-olds. Those were her peers.

30This is a story about meeting Billy too. Billy, at least as far as we knew, had no particular impairments. Billy was an ordinary, typical 4-year-old boy. In fact, he was turning 5 the day that we were there, which is one of the reasons that Billy sticks in my mind. When we visited there, Billy was telling anybody he could get his hands on, including us visitors: “Hey, today’s my birthday. I’m five years old.” So, naturally, to try to be polite and be good guests while we were visiting, we asked Billy, “Five years old, hey, that’s great! Are you having a party today for your birthday?” Billy said: “Well, we’re having cupcakes here at the day-care center, but the real party is going to be Saturday. My mom said it should be Saturday’ cause then all of my friends can come, not just here from the day-care center.” We responded: “Sounds great. Who is coming to your party on Saturday?” Billy replied: “Oh, all my friends are coming. Tommy’s coming, Bobby’s coming, Angela’s coming.”

31I think back to that story as a story about Billy too, even more than as a story about Angela. What difference does social integration make to Angela? Well, I hope that maybe someday, Billy will be a big employer or the mayor, and he’ll be able to make some difference to Angela’s life; but I think social integration will make a difference to Billy’s life whether or not he becomes a powerful person someday. Perhaps by growing up with Angela, Billy will have grown up with a little more variety of people, he will have grown up gentled by the experience of having known Angela, especially if he is able to keep that relationship going as they both grow into their teens, when many of us start to stigmatize each other. Social integration is implied by the interaction dimension of the principle of Normalization, and it is implied also by the interpretation dimension. This, then, has been a story about Angela’s life, but it is just as powerfully a story about Billy’s life and his mind and, metaphorically speaking, his heart.

32The principle of Normalization in summary would ask us to consider how might we help people in danger of being cast into deviant roles, how might we help them to be enabled to be valued instead in their appearance, in their behavior, in their speech, but not only in things about the person. But also how might we help people by changing the context around them, job opportunities that they might have, other opportunities for other kinds of inclusion, other kinds of valued roles, other kinds of richness? How might we help people to be valued in the relationships that they have? How might we help people to become valued even in the services that they receive, and how those services send messages about those people in enhancing ways instead of deviancy-invoking ways?

33Well, we might be able to help people to be valued in all of those six ways that come into that matrix scheme of dimensions and levels. If we attend to each of those two dimensions and we attend to each of those three levels of action, well, that will certainly have its challenging implications for how we might change the insides of human service programs. That looks like a tall order, and it give us plenty of work to do. But of course, from its earliest statements by Wolfensberger, the North American conceptualization of the principle of Normalization has always stressed social integration, compelling us to break out of the insides of human service programs. That demand may not have been sufficiently appreciated by people who have made cosmetic changes in segregated programs. And that demand for social integration may not either have been justly credited by those people who more recently have worked toward inclusive communities. But we have got to break out of just changing the insides of segregated programs; we must provide the needed services and supports so that people who have been cast into devalued roles can become and remain full participants in their families, in their schools, and in their communities. The principle of Normalization, perhaps above all, implies social integration.

7 CONCLUSION

34Let me tell you a story.

35Also in 1975, I had the opportunity to visit a summer day camp near Albany, New York. It was a typical day camp in many ways. About 300 campers came each day, and they were organized by age group. So the 10-year-old boys were the Tigers, the 8-year-old boys were the Eagles, the 9-year-old girls were the Apaches, and the 12-year-old girls were the Mohawks. Through the day, campers in their groups engaged in activities typical of a day camp. swimming, canoeing, nature groups, horseback riding, and so on.

36One thing was not so typical at the camp, however. Its owner and director, Ben Becker, decided that it would be a good learning experience for everyone concerned to have a number of campers be children with physical or mental impairments. So he had an informal quota system to ensure that 5-10% of the campers in any given week were children with handicaps, and he gave out scholarships to assist in this plan. Thus when the Mohawks went horseback riding, not every Mohawk could just jump on a horse and ride; and not every Mohawk could learn as easily or as quickly as every other Mohawk.

37For instance, in the group of 30 Mohawks, one was a girl who was blind. So when she went horseback riding with the Mohawks, another girl rode on another horse next to her to call over instructions and encouragement. Another of the Mohawks was a girl with cerebral palsy, and she had limited control, especially on one side of her body. So when she went horseback riding with the Mohawks, another girl would ride alongside for encouragement, and sometimes on curves one of the counselors would run along the other side of the horse, like a spotter in gymnastics. They certainly didn’t want Mohawks falling off horses. Another of the Mohawks was a girl who had had polio as an infant, and she had no control over her legs at all. So when she went horseback riding with the Mohawks, one of the bigger girls who was already a good rider would ride behind her in the saddle, holding her shoulders to make sure she stayed on the horse.

38We visitors on a PASS team were very impressed with Ben Becker’s camp, but it was only looking back a few years later that I realized that his camp operated under a rule, that every Mohawk is a horseback rider. They didn’t state it as a rule, but that was the principle that guided the camp every day.

39In human services for people with handicaps back in the bad old days, we seemed to operate under a different rule, essentially that some people are horseback riders and some are not. It is a shame, really, since horseback riding is such a fine experience, but some people just don’t have it in them to be horseback riders. Now in services in these more progressive days, it seems that we most often operate under a more enlightened rule. We have high expectations for all of our campers, so our rule now is that every Mohawk will be a horseback rider, someday. In the meantime, we will hire the best teachers and the gentlest horses for our special group of future horseback riders, working with them patiently and intensively until, someday—I know it will come—they will be able to become horseback riders and rejoin the Mohawks.

40Doesn’t sound so bad. But at Ben Becker’s camp they had a different rule: Every Mohawk is a horseback rider now, today. What varies is not who is a horseback rider and who is not; every Mohawk is a horseback rider. And what varies is not when someone will attain horseback-riderhood; every Mohawk is a horseback rider. What varies is only how much help a person needs to stay in the saddle.

41If we can work well in the dimension of interaction with a person and in the dimension of our interpretation of a person to others; and if we can work well at all three levels, directly with the person, with their family and program contexts, and with the broad community and society; then we will be able to make the best possible difference in that person’s life. As Samuel Gridley Howe noted in 1866, “Meaning well is only half our duty; thinking right is the other, and equally important, half.” It may be that meaning well, and caring deeply, about another person cannot be taught, it must be a given. But many of us are grateful that we had the privilege of learning, through the principle of Normalization, a bit of what it might mean to work at thinking right.

Bibliographie

REFERENCE

Wolfensberger, W. (1972). The principle of Normalization in human services. Toronto: National Institute on Mental Retardation.

Auteur

Director of Staff Development, SE Region, Department of Mental Retardation, Carver, MA, USA

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