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A Quarter-Century of Normalization and Social Role Valorization

 | 
Robert J. Flynn
, 
Raymond Lemay

Part 5: Dissemination and Impact of Normalization and Social Role Valorization Through Training and Education

17. Education in applying the principle of Normalization as a factor in the practical arts of improving services for people with disabilities

John O’Brien

Texte intégral

We should regard practice as the only means (other than accident) by which whatever is judged to be honourable... can be kept in concrete experienceable existence. [p. 26]
To praise thinking above action because there is so much ill considered action in the world is to help maintain the kind of world in which action occurs for narrow and transient purposes. To seek after ideas and to cling to them as means of conducting operations, as factors in practical arts, is to participate in creating a world in which the springs of thinking will be clear and ever flowing. [p. 111]
—John Dewey (1929/1988)

1 A DESIGN FOR LEARNING

  • 1 This chapter follows the definition of the principle of Normalization offered by Wolfensberger and (...)

1In the development of better formal services for socially devalued people, the genius of the principle of Normalization1 flows from the practical interaction of three components. Two of these components are ideas, arising from its definition, and one is educational, arising from a common (though by no means universal) teaching practice. The definition (a) sets a direction for learning-through-action that is clear and convincing, as well as indefinite and conditional; and (b) rests on a deep appreciation of the everyday workings of the powers of social devaluation. Some methods for teaching its application give learners the experience of stepping outside the certainties of everyday human service work into a role that can be the seedbed for a new understanding of the situation of people with disabilities.

2This interaction of concept and experience outlines a powerful design for personal and organizational learning. The definition clearly and economically specifies what practitioners at every level of human service work should avoid and what they should create more of, without limiting or prescribing how to do so. This exemplifies the sociotechnical design principle of “minimum critical specification,” which is vital to developing adaptive capacity in rapidly changing environments (Morgan & Ramirez, 1983). The educational experience of looking at services from the perspective of service recipients as socially devalued people invites learners to engage their feelings and beliefs in creating a new reading of (a) effects of existing practice; (b) alternative ways of acting toward socially devalued people and (c) better ways of organizing services for them (Morgan, 1986; Schön, 1983; Weick, 1993).

  • 2 For a painfully funny parody of these practices, see Wolfensberger (1978); the appallingly low scor (...)

3The principle of Normalization offers a clear direction for learning-through-action by specifying a commonsense standard for judgment: Services should use socially valued means to promote socially valued lives. Once people are awakened to this way of seeing, the pervasiveness of service practices that vary wildly from what is typical, much less what is socially valued2, convinces some people that they should do better. From discovering how little most residences are like real homes, how little most day activities are like real jobs, how little special education resembles ordinary schooling, and how well these differences are obscured by everyday beliefs about people with disabilities, people working to apply the principle of Normalization often decide that exploration of one or another socially valued analogies to the form of service under consideration offers a way forward. They work to provide real homes, real jobs, and real schooling. In doing so, they repeatedly confront the protean forms of social devaluation.

2 “AS MUCH AS POSSIBLE”—THE MOTOR FOR LEARNING

4Once practitioners learn, through action and continuing reflection, to move away from the most obvious expressions of devaluation, the indefiniteness of the principle of Normalization, indicated in the phrase “as much as possible,” becomes salient in at least three ways. First, the multiple and interacting ways in which services influence the extent to which people lead valued lives become evident. For instance, apparently disconnected images unthinkingly imposed by a program form a pattern that reveals the common root of multiple devaluing practices in a negative and stereotyped perception of the role of people with disabilities and leads to a call for greater consciousness as essential to reform. These multiple influences are distinguished in the 34 Normalization-related PASS ratings (Wolfensberger & Glenn, 1978) or the 42 PASSING ratings (Wolfensberger & Thomas, 1983), and the different weights attached to each rating provide hints in making trade-offs among them.

5Second, the myriad analogies of what is socially valued invite imaginative attention to what is fitting for individual people, given the resources potentially available to them as citizens; as members of particular cultures, religious groups, and families; and as inhabitants of a particular place. “Home” may be nothing like any particular group home, but the people housed there might draw on different resources to create a variety of very different real homes for themselves.

6Third, realization grows that some important qualities of a valued life are not things that can be delivered by service programs. These virtues result only from shared, lifelong struggles for personal and community development, balance, and maturity. No practitioner, whether a disabled person or an assistant, ever finishes learning what it means to be a responsible citizen, or to be a friend, or to make good use of one’s autonomy, or to develop and express one’s gifts, or to bear well with suffering.

7The principle of Normalization contains this indefiniteness with the conditional phrase, “as much as possible,” which provides a motor for continuing learning through repeated cycles of action and reflection. This conditional phrase brings high aspiration firmly in contact with everyday life in a way that invites practitioners to acknowledge and actively engage multiple constraints in their pursuit of socially valued lives. “As much as possible” acknowledges limits arising from the level of overall resources available in a society and in a community; a person’s disability, given access to assistive and instructional technology; a person’s choice, given opportunity and assistance; and the human condition. These limits are framed as constraints to be actively engaged in the process of learning rather than used as excuses for inaction or shoddy work. Active engagement will change the limits in uncertain and unpredictable ways: A disabled person who experiences the expectations and rewards of filling a valued job role will face new developmental challenges with different resources than a person left to languish as a client in an activity center. Some challenges may be daunting and the person’s resources may be insufficient, but the set of constraints is changed by seeking as valued a way as possible to offer the person occupation. Consciously engaging a system of constraints by taking incremental steps to modify them, and then reflecting carefully on the problems and possibilities posed by the resulting set of constraints, is fundamental to any good design process (Alexander, 1964).

8As much as possible” defines an expanding horizon. As action creates new problems and new possibilities, the sense of what is possible expands. So rapidly have some people with disabilities and their allies moved into new territories that dealing with the rate of change in relevant information becomes a problem in itself. It is demanding to find out about rapidly proliferating social inventions and challenging to discern what will lead people toward more valued lives. Neither the rush to embrace the latest fad nor the out-of-hand dismissal of new approaches as “crazes” are helpful in discovering the limits of what is possible, however useful these strategies may be to defend against overload. Both foolish optimism and hopeless pessimism serve the powers of social devaluation.

3 THE POWERS OF SOCIAL DEVALUATION

9Those who apply the principle of Normalization do not find a smooth road that they can traverse from darkness into light just by working smart and hard. Their work is not like sculpting hard stone or building a highway in difficult terrain. The situations they struggle to change don’t passively assume the shape of their meticulously implemented designs as a simple function of craft and persistence. The situations they struggle to change fight back. There is even more to this intractability than the political difficulty of persuading or commanding people with diverse interests to cooperate, or the managerial problems of accounting for complex uncertainty. The social systems they must transform so that people with disabilities have decent living conditions are dynamically conservative (Schön, 1971): No sooner do they find ways to expand available valued roles than some other force comes into play to push disabled people out of them.

10Much teaching about the principle of Normalization descriptively labels this systemic capacity to fight back social devaluation, and elucidates its dynamics: There are powerful and actively oppressive forces inherent in human social organization that assign disabled people to devalued roles and cast them out of ordinary society into settings that congregate, segregate, control, and further stigmatize them. Efforts to offer people valued social roles and good life conditions are themselves stamped by these forces, usually in ways that are not apparent to change agents until ironic or downright destructive consequences ensue.

FIGURE 17.1 COMPLEMENTARY PATHS TO SERVICE REFORM

FIGURE 17.1 COMPLEMENTARY PATHS TO SERVICE REFORM
  • 3 Wolfensberger himself has thought deeply on this question and its implications (see Wolfensberger [ (...)

11This descriptive approach to the workings of oppression helps to alert learners to the sorts of opposition they will contend with as they apply the principle of Normalization. However, beyond the tautology that devaluation is based on social perception of negatively valued difference, it fails to satisfy the deeper question of why social devaluation exists. As fundamentally important as one’s answer to this deeper question is, part of the practical utility of the principle of Normalization comes from the fact that people with very different analyses and very different beliefs about why social devaluation occurs (and what its proper name is)3 find common ground for agreement about how social devaluation works itself out and what might be done to constructively engage it.

4 COMPLEMENTARY PATHS TO REFORM

12Learning to reform services by accepting the challenge of “as much as possible” while contending with the shifty forces of social devaluation does not follow a linear course. One idealized way to understand the kind of learning necessary is to see it as a journey that follows two complementary paths: a path of detachment, which clarifies what should be avoided, and a path of creation, which somewhat expands the extent of “as much as possible,” at least in the life of a few people. The path of detachment begins with a break from the unconscious routine of ordinary practice and ends in a conscious choice to stop those aspects of ordinary practice that are harmful. The decision to withdraw from these practices brings a turning point that opens a path of creation. Following the path of creation ends in a new level of ordinary practice that embodies greater capacity to support new and more valued roles and experiences. This equilibrium leads in its turn to the opportunity for a further detachment from devaluing actions and service forms. At any point a learner can refuse the next step and go back to routine practice; indeed, most of the contingencies in the service environment will shape the learner toward unconscious routine.

FIGURE 17.2 MULTIPLE CREATIVE PATHS

FIGURE 17.2 MULTIPLE CREATIVE PATHS

13These two paths are only complementary if the traveler chooses to make them so. There are at least two ways of failing the test set by the principle of Normalization (symbolized by the dashed lines on figure 17.1): one can mindlessly continue ordinary practice (“We are already offering people ‘as much as possible’”), or one can follow the path of detachment past the turning point and withdraw from the possibility of any creative action (“Nothing can work perfectly, so nothing is worth doing in this arena”).

14Of course, there are many creative paths that do not involve working to reform services. One’s reading of the possibilities for formal service reform might lead to creative effort to build up informal services; or one might feel a call to deeper personal engagement in sharing life with devalued people (Zipperlen & O’Brien, 1994).

5 THE PATH OF DETACHMENT

15The path of detachment leads through a deepening understanding of the many, systematically related ways in which disabled people are commonly wounded by socially typical beliefs and practices to a realization that devalued people are vulnerable in ways that call for vigorous and principled response. This teaching is commonly done in lectures about the wounds or common experiences of handicapped people. Then the learner comes to recognize at least some of the many specific ways that ordinary service practices reinforce negative beliefs and amplify devalued people’s vulnerability. The team assessment of an actual service using the Normalization-related ratings in PASS, or using PASSING, teaches this in an unparalleled way. The learner then is in a position to bring to the surface some of the assumptions or models that generate devaluing effects as a consequence of their form and content. Usually these faults express and reinforce one or another of the common devaluing roles disabled people are cast into. Team analysis of what PASS calls the “model coherency” of a service can teach this in a thorough way. The path of detachment then leads the learner to a decision: Will he or she accept the discipline of withdrawing energy from activities and service forms now recognized as hurtful?

16It is, of course, usually easy to advocate for stopping hurtful practice when one visits a program staffed by others whose flaws glare in the light of one’s external assessment. It is harder when one is called on to notice and withdraw from harmful routines of one’s own. Understandably, if regrettably, many find this shift from seeing others’ devaluing practices to rooting out one’s own very difficult. The fact that most efforts at Normalization-related education to date have lacked the organizational resources to provide extended support for transferring learning from intensive workshops to everyday practice helps to account for this. Many who can’t walk the path of detachment in their own practice simply shake their heads at the strange and devaluing ways of foreigners (“Thank goodness we’re nothing like the staff I assessed during the workshop”). A few people get stuck in the defensive role of refining their criticism of others rather than working for change in their own situations (perhaps by becoming PASS or PASSING groupies or, even worse, consultants).

6 THE TURNING POINT

17The decision to withdraw from activities and service forms unmasked as hurtful brings the learner to another decision: whether to withdraw completely from the work of reforming services and to pursue a more communitarian or personalistic commitment to devalued people, or to look for a path of creation that has a good chance of leading toward reformed services. Identifying this decision is not to make a moral judgment in favor of service reform; it is only to say that moving away from service reform leads a person away from one of the central challenges of the principle of Normalization—which, as exhaustively defined by the written PASS and PASSING books, is almost completely about reforming service practice. There can be great merit in deciding not to step back into the service world and embracing some other commitment. And, given the craziness of service systems, following the path of detachment right out of the service world may sometimes be the most prudent course of action as well.

18Some people do not seem to find a creative path. They may be daunted by the long-term action required to take even small creative steps. They may be paralyzed by an analysis so critical that it leaves no room for action. They may be so disappointed by greater awareness of the negative results of practices in which they had placed their faith that nothing seems worth doing. While people who do not make the turn from the way of detachment to one of the paths of creation may be able to minimize the harm they do, they have little chance of doing good.

7 THE PATH OF CREATION

19Once chosen, the path of creation opens new ground because making things a bit better is seldom as simple as just reversing negative practice. Involuntary segregation oppresses people, but identifying integration as a goal only begins a process of understanding what it means and how to take steps toward its achievement. One of the most common sources of perversion of positive efforts comes from this kind of facile reversal, as, for instance, when the remedy for domination and deprivation of autonomy is unthinkingly defined as “choice” and more “choice.” It may be that the linear construction of PASS and PASSING ratings increases the potential for this error: on these scales, level 1 (the lowest level of quality) and level 5 (typically the highest level of quality) are presented as poles. But real reform usually takes far more than simply climbing from the bottom rung to the top rung of the ladder one is already on. Instead, one must step onto another ladder, which often rests against a different wall. For example, simpleminded commitment to self-determination or choice will be positively dangerous to intellectually disabled people unless it happens in the context of great effort at weaving a safety net of relationships in which the person recognizes others as a trustworthy source of guidance and authority.

  • 4 It is possible, as above, to identify relatively widely used educational practices to guide people (...)

20So the climb up the path of creation begins with an expanded awareness of the identity of people with disabilities that complements rather than negates the reality of their wounds and vulnerabilities. On this path, disabled people are revealed as both wounded and capable of resistance; both vulnerable due to disability and capable of bringing important gifts. It is the potential for resistance and the gifts and capacities of particular disabled people, in a particular social context, that energizes and directs the path of creation4.

21The learner begins by deepening appreciation for the ways some people with disabilities and some families with disabled members and some service workers have resisted the forces of devaluation, especially those expressed through the professional bureaucracies that have become typical in this generation. Then the path leads to a realization of the gifts and contributions disabled people can make to the life of the learner’s own community. These gifts typically lie hidden under the devaluing certainties that define modern life (Wolfensberger, 1988).

22Here a significant difference between the two paths comes into focus: It is possible to understand what not to do by contemplating the situation of devalued people as a class in society (i.e., abstractly or universally); but expanding the meaning of “as much as possible” in practice requires alliance with specific disabled people and knowledge of their identity in specific communities. It is, therefore, necessarily concrete and particular. A learner can draw on richer images of what is possible, and draw many valid lessons for change, by listening thoughtfully to stories of what others have achieved, but a learner can only create a new capacity to offer better life conditions in a particular community and in company with particular people.

23The next step along the way of creation is the articulation of a vision or image of a desirable future in which people would have greater opportunities for membership, contribution, and more valued social roles. Such an image will provide direction, energy, and invitation for some other people to become allies in the effort to create a change. While this image guides service reform, it is clearly different from a plan for service change. It specifies what roles service workers will need to assist people in taking and playing, but not how they will organize themselves to do so.

24Next, the path of creation leads to efforts to align, and often to increase, the personal, family, community, and service resources available to people in order to increase the chances that they will occupy the social roles that will make it possible for them to contribute and to experience the benefits of community membership. Here is where a service interested in becoming more relevant will find rich and challenging information for agency and system planning.

25This alignment of personal, associational, and service resources is often very imperfect. Service funds may be so entangled in bureaucratic requirements that they are next to useless, or family members may deeply disagree with one another, or a disabled person may want something but be unwilling to sustain disciplined effort to achieve it. But, however imperfect, this alignment is the basis for problem solving.

26As change unfolds and difficulties accumulate, there will be flurries of problem-solving activity. Service providers will need to attend to how they can provide adequate assistance at an efficient price and how they can participate in identifying the negative effects of the change and, as much as possible, safeguarding people from them.

27As disabled people and their allies experience the benefits and the new problems arising from change, there will be many opportunities to renew and deepen commitment by joining in celebrating accomplishments and mourning losses and by supporting one another to carry on the work of constructive change.

28The path of creation reaches the level ground of ordinary practice when people are established in new and valued roles and the assistance they require is available as part of everyday service activity. This period of ordinary practice continues until another cycle of learning begins with a renewed awareness of the wounds and vulnerabilities that endure despite the previous round of reform.

8 CONCLUSION

29Failure to appreciate either the power of social devaluation or the promise of working hard to continually expand what is possible blunts the principle of Normalization’s effectiveness as a guide for the creation of better services, and feeds the widespread temptation to approach deep and enduring ethical issues with superficial and transient techniques. Only by forming and sustaining heart-to-heart alliances with devalued people can people concerned to improve services walk the complementary paths of detachment and creation toward a somewhat more just and inclusive community. The result will inevitably be far from Utopian, but the journey will sober and delight those who make it.

Bibliographie

REFERENCES

Alexander, C. (1964). Notes on a synthesis of form. Cambridge. MA: Harvard University Press.

Dewey, J. (1929/1988). The quest for certainty. Carbondale. IL: Southern Illinois University Press.

Morgan, G. (1986). Images of organization. Newbury Park, CA: Sage.

Morgan, G., & Ramirez, R. (1983). Action learning: A holographic metaphor for guiding social change. Human Relations, 37(1), 1-28.

O’Brien, J., & Lovett, H. (1993). Finding a way toward everyday lives: The contribution of person-centered planning. Harrisburg, PA: Department of Public Welfare.

O’brien, J., & Lyle O’brien, C. (1990). What’s worth working for? Perspective on human service leadership. In V. Bradley & H. Bersani (Eds.), Quality assurance for individuals with developmental disabilities: It’s everybody’s business. Baltimore: Paul H. Brookes Publishers.

Schön, D. (1971). Beyond the stable state. New York: Random House.

Schön, D. (1983). The reflective practitioner. New York: Norton.

Weick, K. (1993). Organizational redesign as improvisation. In G. Huber & W. Glick, (Eds.), Organizational change and redesign: Ideas and insights for improving performance. New York: Oxford University Press.

Wink, W. (1993). Engaging the powers. Philadelphia: Fortress Press.

Wolfensberger, W. (1978). The ideal service for socially devalued people. Rehabilitation Literature, 39(1), 15-17.

Wolfensberger, W. (1988). Common assets of mentally retarded people that are commonly not acknowledged. Mental Retardation, 26(2), 63-70.

Wolfensberger, W. (1994). A personal interpretation of the mental retardation scene in light of the “signs of the times.” Mental Retardation, 32(1), 19-33.

Wolfensberger, W., & Glenn, L. (1978). Program analysis of service systems (PASS): A method for the quantitative evaluation of human services: Vol. 2. Field manual (3rd ed.). Toronto, ON: National Institute on Mental Retardation.

Wolfensberger, W., & Thomas, S. (1983). PASSING (Program analysis of service systems’ implementation of Normalization goals): Normalization criteria and ratings manual (2nd ed.). Toronto, ON: National Institute on Mental Retardation.

Zipperlen, H., & O’Brien, J. (1994). Cultivating thinking hearts: Letters from the lifesharing safeguards project. Harrisburg, PA: Pennsylvania Developmental Disabilities Council.

Notes

1 This chapter follows the definition of the principle of Normalization offered by Wolfensberger and Glenn (1978) and by Wolfensberger and Thomas (1983). The principle of Normalization has wide application to socially devalued people and many implications for informal services and social change efforts outside of formal services (see Thomas, chapter 15, this volume). However, this chapter focuses narrowly on its application in attempts to reform formal services, mostly by workers in services for people with mental retardation. Recent deliberations among people currently involved in SRV teaching distinguish several types of service, but here I mean the work done by someone employed by an agency whose mission is to assist people with disabilities. I recognize that many people currently associated with teaching about SRV/Normalization would not agree with my framing the principle in terms of philosophical pragmatism, indeed, some might think it misleading for me to do so, but this is the perspective that has framed my own service reform work.

2 For a painfully funny parody of these practices, see Wolfensberger (1978); the appallingly low scores that continue to be typical when services are evaluated against straightforward Normalization criteria testify to the unfortunate endurance of these practices (Flynn, chapter 14, this volume).

3 Wolfensberger himself has thought deeply on this question and its implications (see Wolfensberger [1994] for a very partial summary). Unfortunately, he has not published extensively on the implications of his moral analysis for SRV/Normalization, though he and his associates have taught a great deal about this in workshops presented by the Training Institute. Others have criticized the principle of Normalization on the grounds that its analysis of the political and material conditions of disabled people is shallow and naive (see, for example, Oliver, chapter 6, this volume). I have learned a great deal from Walter Wink’s (1993) theological ethics, especially as he explicates the workings of what the New Testament calls the “powers and principalities.”

4 It is possible, as above, to identify relatively widely used educational practices to guide people along the path of detachment. Fewer educational activities have been developed to guide people along the path of creation. Some beginning examples of these approaches include: Model Coherency workshops presented by Wolfensberger’s Training Institute; a variety of approaches to person-centered planning (see O’Brien & Lovett [1993], for a review); and Framework for Accomplishment (see O’Brien & Lyle O’Brien [1990], for a conceptual outline of this process).

Table des illustrations

Titre FIGURE 17.1 COMPLEMENTARY PATHS TO SERVICE REFORM
URL http://books.openedition.org/uop/docannexe/image/2503/img-1.jpg
Fichier image/jpeg, 88k
Titre FIGURE 17.2 MULTIPLE CREATIVE PATHS
URL http://books.openedition.org/uop/docannexe/image/2503/img-2.jpg
Fichier image/jpeg, 53k

Auteur

Responsive Systems Associates, Lithonia, GA, USA

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