Mesibov Normalization is Relevance

8/11/2019 Mesibov Normalization is Relevance

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Journa l o f Au t i sm and De ve lopm enta l Disorders Vo l. 20 No . 3 1990

N o r m a l iz a t io n a n d ts R e l e v a nc e T o d a y

G a r y B M e s ib o v

Div i sio n T E A C CH Un iv e rs it y o f No r th Ca r o li n a a t Ch a p e l H i l l

H i s t o r ic a l l y , t h e n o r m a l i z a t i o n p r i n c i p l e h a s b e e n in f l u e n t i a l in p r o m o t i n g

a c o m p r e h e n s i v e c o m m u n i t y - b a s e d s e rv i ce d e l iv e r y s y s t e m f o r p e o p l e w i t h

d e v e l o p m e n t a l h a n d i c a p s . H o w e v e r , i ts e f f e c t s w e r e m o r e p o s i t iv e a d e c a de

a g o w h e n t h e is s ue s w e r e s i m p l y i n h u m a n e i n s ti t u ti o n s o r m o r e i n d iv i d ua l -

i z e d c o m m u n i t y - b a s e d a lt er n at iv e s. I s s u e s i n c o m m u n i t y - b a s e d p r o g r a m s f o r

d e v e l o p m e n t a ll y h a n d i c a p p e d p e o p l e h a v e b e c o m e m o r e d iv e rs e a n d t h e

c h o ic e s m o r e c o m p l e x . I n t h e c u r re n t c li m a te , t h e e ff e c t s o f t h e n o r m a l i za -

t i o n p r i n c i p l e h a v e p o l a r i z e d i s s u e s f o r s e v e r a l re a s o n s : T h e t h e o r y w o r k s

b e t t e r t h a n c u r r e n t p ra c t ic e , t h e c r it e ri a a r e v a g u e a n d t h e g o a l s u n a t t a i n a -

b le , n o r m a l i z a ti o n t a k e s t h e f o c u s a w a y f r o m i n d i v id u a l c l ie n t ne e d s, t h e th e -

o r y d i s c o u r a g es d i ve r si ty , n o r m a l i z a ti o n h a s b e c o m e a ra l ly in g p o i n t f o r

inappropr ia te prac ti ces, over zea lousnes s o f norm al i za t ion a dvoca tes has po la -

r i z e d i ss ue s, n o r m a l i z a t io n p r o m o t e s a n u n d e s ir a b le v a l u e s y s t e m , a n d n o r -

m a l i z a t i o n i g n o r e s h a n d i c a p p e d c li en t s d e f i ci t s. W h a t i s n e e d e d to re p l a c e

t h e n o r m a l i z a t i o n p r i n c i p l e t o d a y a r e g u i d i n g c o n c e p t s t h a t a r e c le ar er, m o r e

r e s p o n s i v e t o c l i e n t n e e d s , a n d m o r e r e f l e c t i v e o f v a l u e s y s t e m s t h a t a r e i n

t h e b e s t i n t e r e s t s o f h a n d i c a p p e d p e o p l e .

The normalization principle has been influencing services to citizens

with developmental handicaps in the United States for the past two decades.

It was first articulated in Scandinavia where it was designed to obtain an

existence as close to the normal as possible (Nirje, 1969, p. 181) for citizens

with handicaps. The principle has been popularized in the United States by

Wolfensberger (1972) and his collaborators and has had a major impact on

services in this country.

The facts are very clear that some progress in our service delivery sys-

tem for people with developmental handicaps has resulted from the normali-

zation principle. In the late 1960s many mentally retarded people were housed

in large, impersonal institutional settings with few programs or opportuni-

379

0162-3257/90/0900-0379506.00/0 9 1990 Plenum Publishing

orporation


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al characteristics of the residents in the setting in order to complete the scale.

Adjust ing one's normalized practices to the extent possible for individual

residents is not even recognized as significant by the instrument developed by

Wolfensberger and Glenn to evaluate residential settings according to the

normalization principle.

Criteria re Vague and Goals Unattainable

When dealing with a population as large and diverse as we have in

America, the concept of what is normal becomes elusive at best. Given our

population of over 200 million citizens, it is possible to find some who are

old and some who are young, some who are living in cities and some living

in the country, some rigorously following religious teachings with others dis-

avowing all religious activities, and so forth. Out of this diversity the fol-

lowers of the normalization principle have determined somehow that certain

practices fit what is normal in our society whereas others do not. When the

issue was whether or not to institutionalize, the decision was fairly simple

and straightforward, acknowledging that most handicapped people should

live in the community. However, as our service delivery system became more

complex so did the choices.

The unfo rtunate consequence of these changes is that the limited value

system of the proponents of normalization has become the criteria by which

community-based programs are judged. For example, there seems to be a

bias favoring more urban-type environments, making group homes close to

bus lines in cities the most accepted practice. On the other hand, community-

based programs in the country are viewed as less desirable because of their

relative isolation, distance from population centers, and lack of public trans-

porta tion. To argue that these are less normal environments is a bit presump-

tuous, especially in states like North Carolina, South Dakota, Idaho, or

Nebraska, where more rural life-styles are the norm rather than the excep-

tion. It also uses a narrow concept of what is normal to determine the ap-

propriateness of living environments for developmentally handicapped

people.

In addition to establishing criteria that are vague and elusive, normali-

zation represents a goal that is, in most cases, unattainable. Although most

of us in the field of developmental disabilities are impressed with the progress

handicapped people can make in nurturing environments, we are also realis-

tic in acknowledging that their organic problems place some limitations on

their overall functioning, even in ideal circumstances. This is, of course, why

our system of special services has developed and is the justif icat ion for the

existence of special educational and governmental programs. Although this

statement might sound like heresy to some, it is no different from acknowledg-


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ing that someone with average athletic ability cannot become a professional

basketball player or that someone with an average intellect will not become

a Nobel Prize winner in Chemistry.

By establishing a goal that many handicapped people will not fully achieve

we are doing them a disservice. Although part of the human condition is

to cont inually strive for new and bigger horizons we also need times when

we achieve specific goals and can sit back and feel good about our accom-

plishments. By establishing a goal that is slightly beyond the grasp of most

organically impaired developmentally handicapped people we are depriv-

ing them of the opportunit ies to achieve their goals from time to time. This

places them in a position where they are consistently falling short even if

they are progressing. This has to result in considerable frustration and self-

deprecation on their part.

Takes Focus way fr om Clients

Another major shortcoming of the normalization principle for current

practice with handicapped people and their families is that it removes the

focus from individual clients and places it on administrative systems. Nor-

malization is generally not applied to individual needs desires motivations

or related practices. Instead it is applied to systems that however well mean-

ing do not always act in the best interests of individual people.

On a recent consultation to another state I found an excellent example

of this problem. While visiting a classroom with autistic children who were

gradually being mainstreamed into a normal first-grade class I asked the

teacher what kind of progress the children had made since they began in his

class 8 months earlier. The teacher proudly reported that the time spent by

the autistic children in the normal class had increased from 5 to 20 hours

per week during that time period. When I asked about the specific achieve-

ment or development of his individual students in terms of their interests

skills or behaviors the teacher was unable to point to anything specific. He

kept reiterating how wonderful it was that they were spending increased time

in the nonhandicapped classroom.

Time spent in a nonhandicapped classroom is not necessarily indica-

tive of progress. We can agree with mainstreaming advocates who believe

this to be impor tant for the development of children however the ultimate

criterion needs to be the progress of the individual child. We must continue

to look at individual children to know who benefits and who does not from

certain normalizing administrative practices like mainstreaming in the pub-

lic schools. Although mainstreaming might result in progress for a majority


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of youngsters with autism and other severe handicaps, there are also those

who become extremely withdrawn as a result of these experiences and con-

sequently involve themselves in fewer social activities. In fact, some han-

dicapped youngsters we have worked with have actually regressed because

of inappropriate integration into nonhandicapped settings. Staunch advo-

cates of the normaliza tion principle often inadvertently neglect the primary

purpose o f education: the maximal development of each individual person.

iscourages iversity

The normaliza tion principle has also tended to stifle diversity. As indi-

cated earlier it has led to a situation where a small group of adherents to

the principle have joined to determine which practices fit the criterion of nor-

malcy in our country and which do not. Given the complex choices and pos-

sibilities facing our country today , now that most o f us have agreed to end

the warehousing of handicapped people, normalization currently stifles rather

than enhances creativity and innovation in program development.

Although group homes, apartments, and specialized foster care have

greatly expanded residential options for individuals with handicaps, they

represent a narrow range of possibilities. Many handicapped people around

our country are still in need of programs because they are unable to func-

tion optimally within these residential alternatives. Unfortunately, many

professionals are reluctant to pursue other options because of the pressure

to stay within the limited range of approved, normalized practices. If nor-

malized practices had been followed through the years as rigorously as to-

day, we never would have developed any special education services at all

because these do not represent normalized educational programs.

What we need today are more, not fewer, options for individuals with

handicaps. Group homes and similar residential facilities have represented

an important step forward in our services for handicapped people. However,

our ability to develop these programs, even in the most progressive states,

has not even begun to keep up with the demand. Moreover, these programs

have not always been the most appropriate for all handicapped people, and

especially those with autism. We are at a crucial time in the development

of community-based services when innovation and program development are

going to be important if we are to effectively serve the large number of han-

dicapped people still in need and especially those who have not fit into the

models now available. At this time the normalizat ion principle is doing more

harm than good because of its tendency to stifle new programmatic models.

What is new and innovative is certainly not normal


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Rallying Point for nappropriate Practices

Although it is professionals rather than theories or administrative struc-

tures that determine the appropriateness of intervention techniques, theories

like the normalization principle can either facilitate or interfere with their

implementation. Theories can be helpful if they lead professionals into ap-

propriate directions and increase the likelihood that they will make decisions

in the best interests of their clients. Unfor tunately, the normalization princi-

ple with its emphasis on administrative structures does not always highlight

the individualized needs of clients. This is generally problematic and espe-

cially so for those with autism for whom individualized programs and ap-

proaches are essential.

There are many examples from current practices of how the normali-

zation principle has led to inappropriate practices for people with autism.

Although these people need exposure to normalized community-based set-

tings as much as any other group of handicapped citizens, they also have

a strong need for individualized environments and very gradual transitions

to more normalized settings. The problems tha t many autistic students have

with distractibility and their difficulties handling many types of stimulation

make it important for them to begin learning in environments that are less

visually or auditorally stimulating then most mainstreamed settings. Although

these students are usually able to make the transition if it is slow and gradu-

al, one has to be sensitive to where they are in this process and be sure not

to move them along too rapidly.

Rhoades and Browning (1977) argued that the normalization principle

and its emphasis on reducing contacts among handicapped people can lead

to greater isolation and can inhibit the development of meaningful relation-

ships. They explained tha t many subgroups within our culture frequently mix

extensively among themselves because of common interests and needs. Groups

are often formed to facilitate these interactions, such as Little People as a

way of organizing and facilitating interactions among dwarfs. In general,

subgroups of people with common skills and interests often contain some

of the closest relationships that these people form. By discouraging these

groups normalization advocates are restricting developmentally handicapped

people from some of their potentially most satisfying relationships. Conse-

quently, opportunities for developmentally handicapped persons to estab-

lish meaningful peer relationships with similar others are great ly restricted.

Is it really our goal to practice an ideology so literally that retarded persons

need to reduce contact with others who share their own exceptionality in order

to be successfully normalized? Hopefully not (Rhoades & Browning, 1977,

p. 24).


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sible for educating others. This education comes not only through specific

talks and presentations but also by our general conduct, principles, and

philosophies. A theory as prominent as the normalization principle is gener-

aly regarded as a statement of the philosophy of professionals working with

handicapped individuals and their families. As a general statement of our

philosophies and beliefs this principle is misleading and potentially harmful.

As a value system normalization is harmful both to handicapped peo-

ple and to the relationship of our programs to the general public. It is harm-

ful to the handicapped people it is designed to assist because it suggests that

they are not a very desirable group. It suggests this by emphasizing their need

to change and become more like other people by spending more time with

them. We see this quite clearly in the PASS scoring system (Wolfensberger

& Glenn, 1973, p. 17) where deviant contac t is measured giving the lowest

rating when the deviant clients are placed to a major degree in social group-

ings which are comprised of deviant individuals, and the highest rating when

the programs go to great lengths to avoid client contact with deviant groups.

An assumption behind this emphasis is that handicapped people might learn

additional inappropriate behaviors if they spend too much time around other

handicapped people. At best this is not a very flattering message about han-

dicapped people. At worst, it could convey to the general population that

handicapped people are a group one should avoid.

As nonhandicapped citizens, most of us are generally encouraged to

seek out and spend time with people like ourselves. This helps us to find people

with similar interests and also enhances our self-esteem because it implies

we are desirable by suggesting we enjoy spending time with similar others .

For handicapped citizens the situation is reversed because of the influence

of the normalization principle. Handicapped people are discouraged from

spending large amounts of time with other handicapped citizens and are regu-

larly encouraged to move into settings with nonhandicapped peers. The con-

tinuous message is that nonhandicapped peers are more desirable than

handicapped people like themselves. Unfortunately, this also makes it more

likely that they will be with others who do not share their interests or skill

levels. Although the effects of the normalization principle on the self-concepts

of handicapped people have not been fully explored, it seems likely that they

have been quite detrimental.

The normalization principle has had an equally negative effect on the

general public in terms of the value system that it conveys. As a principle,

normalization talks about general society rather than individuals. The em-

phasis on normalized experiences and environments highlights those aspects

of handicapped people that are like everyone else. Although this was helpful

when the treatment of handicapped people was so different from the way

nonhandicapped people lived, today this emphasis might be counterproduc-

tive. What most advocates argue and Public Law 94-142 explicitly states is


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emphasized but that they be understood. We must maintain a balance be-

tween emphasizing strengths and understanding the many deficits confront-

ing handicapped people. Ignoring their deficits can be as devastating as not

fully recognizing their s trengths. Single-minded adherence to the normaliza-

tion principle has helped create both misunderstanding and avoidable

difficulties.

Numerous examples come from our group home experiences with au-

tistic adolescents and adults. Many o f these residential programs avoid struc-

turing leisure time because it is neither normal nor natural. Unfortunate ly

for many autistic people, leisure is the most diff icult time for them to cope

with and a lack of structure often results in severe behavioral difficulties.

General theories focusing professionals more closely on individual needs help

in guiding residential staff to make more appropriate decisions on behalf

of their clients.

Effective programming with handicapped people requires a combina-

tion of developing strengths and minimizing deficits. Both parts of this process

are essential for maximal development. A theory like normalizat ion that em-

phasizes one to the exclusion of the other does not offer the best possible

opportunities for handicapped people and their families.

M J O R I S SU E S

This discussion has focused on the normalization principle and the

problems with using it as a guiding force for serving developmentally han-

dicapped people and their families. Although an important rallying point

for the much-needed deinstitutionalization movement of the 1960s, the greater

complexity of today s issues and choices has made the principle more of a

detriment than an advantage. When the choices were simply between institu-

tional and community-based living, the normalization principle was a clear

and simple way to articulate why many had a right to live in the community.

However, the current climate makes simple resolutions inadequate and often

misleading. As Beke (1986) has written:

T h e c o n c e p t o f n o r m a l i z a t i o n i s a p p e a l i n g in i ts s i m p l ic i ty . I t m e a n s t h a t t h e m e n -

t a ll y h a n d i c a p p e d s h o u l d b e e n t it l e d t o li ve a li fe a s s i m i l a r t o a n o r m a l p e r s o n

a s p o s s ib l e . H o w e v e r , t h e r e is a d a n g e r i n s u c h c a t c h w o r d s b e c a u s e t h e y a l lo w l a z y

m i n d s t o a v o i d w h a t w o u l d o t h e r w i s e r e q u ir e m o r e d i f f ic u l t , r a ti o n a l a n a l y s is . C o n -

c e p t s l ik e t h i s t e n d t o b e a p p e a l i n g a l s o b e c a u s e t h e y b e c o m e a b s o l u t e a n d t h e r e f o r e ,

e a s y to a d m i n i s t e r . ( p . 2 )

In his excellent analysis of the normalizat ion principle, Throne (1975)

suggested that the problem was in using the principle as an end rather than

a means. He argued that normalization is a helpful concept for achieving

important goals for handicapped citizens. However, Throne stated that


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professionals sometimes invite difficulties when they suggest that normal-

ized principles are ends in themselves.

Throne's thoughtful article is important and relevant. It is also part of

a larger issue that clarifies the evolution of this principle and related problems

in America. Normalization was first described and implemented in the Scan-

dinavian countries where there is a tradition of more process- or means-

oriented thought than in America. In describing the normalization concept

and specifying to the extent possible, Scandinavians were most probably

thinking about a process, rather than goals in and of themselves. Normal-

ized practices were advocated to facilitate the personal development of han-

dicapped citizens.

However, when the normalization principle was translated by Wolfens-

berger in the early 1970s, it took on a slightly different flavor. The more

goat-oriented American professionals subtly switched the emphasis from

means to ends while advocating for the principle in American programs.

Although the pragmatic, goal-oriented way of doing things in America is

sometimes an important advantage, in the long run it has not worked out

that way with the normalization principle. As already described in this report,

our goal-oriented focus has resulted in too little emphasis on meeting individu-

alized needs.

What we must do now is return to an appropria te focus on individual

needs and possibilities. We must move away from emphasizing systems and

administrative structures and toward promoting individualized needs and pos-

sibilities. Normalization should take its place as one of the important im-

plementation strategies, though never as the goal. In this way our service

delivery system can truly meet the needs of the handicapped people they were

designed to serve.

As we approach the 1990s it is time to say thank you to the normaliza-

tion principle for what it has done and to acknowiedge that its success has

led to more complex decisions and the need for guiding concepts that reflect

this greater complexity. The normaliza tion principle should go the way of

the manual typewriter which served us well in simpler times but whose speed

and capabilities are not quite commensurate with our current needs and tech-

nology. It is time for principles and concepts that more accurately reflect

the current state of our art.

What is needed to replace the normalization principle are some guid-

ing concepts that are clearer, more specific, and more accurately reflect a

value system that is in the best interest o f the handicapped people we serve.

A theoretical system is needed that accepts and values handicapped people

for what they are instead of for what a small group would like them to be-

come. This acceptance should not allow stagnation but must rather nur ture

growth and development to the maximum extent possible. Acceptance does

not preclude encouraging positive change.


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3 9 M e s i b o v

W h a t i s a l s o n e e d e d i s a s et o f c o n c e p t s t h a t h i g h l i g h t t h e i n d i v i d u a l

n e e d s o f e a c h h a n d i c a p p e d p e r s o n . H i g h l i g h t i n g t h es e n e e ds i s th e o n l y w a y

t o a s s u r e t h a t t h e e s s e n t i a l i n d i v i d u a l i z e d a p p r o a c h e s w i l l b e i m p l e m e n t e d

t o t h e e x t e n t p o s s i b l e . I n d i v i d u a l i z e d s y st e m s m u s t e n c o u r a g e a n d s t i m u l a t e

d i v e r si ty . O n l y i n t h i s w a y c a n t h e c r e a t iv e e n e r g i e s o f p a r e n t s a n d p r o f e s -

s i o n a l s b e c u l t i v a te d s o t h a t n e w a n d m o r e e f f e c ti v e a p p r o a c h e s c a n b e i d e n -

t if ie d a n d p u r su e d . Ou r p r e se n t t e c h n o lo g y a n d c o n c e p t u a l i z a t io n s c a n n e v er

b e g i n t o m e e t t h e n ee d s o f h a n d i c a p p e d p e o p l e a n d o u r o n l y h o p e i s t h e c o n -

t i n u o u s d e v e l o p m e n t o f n e w i d e a s a n d p r a c t i c e s .

F i n a ll y o u r n e w a p p r o a c h e s m u s t b e a c c o m p a n i e d b y n e w a t t it u d es

b e c a u s e p r o f e s s i o n a l s m u s t l e a r n t o t o l e r a t e t h e a m b i g u i t y i n h e r e n t i n o u r

w o r k a n d o u r s o c i e t y . T h e r e f o r e

It is necessary to try to organize our in formation about our world, including our in-

formation about mental retardation, in order that we make the soundest and most

appropr iate decisions we can. We will need to try to bring together the bits and pieces

of in formation about common characteristics about groups. We will also need to re-

mind ourselves that most of the informa tion will be couched in terms o f averages

for groups and that the variability within g r o u p s . . , and the deviant c a s e s . . , must

never be ignored. And we would do well to try to increase our tolerance for the in-

evitable ambiguities we face in the field of mental retardation for many years to come.

(Warren, 1975, p. 2)

R E F E R E N C E S

Beke, A. J. (1986). Normalization and hysterectomies.

Autism Society Canada 5

1-3.

Greenspan, S., Cerreto, M. (1989). Normalization, deinsti tutionalizat ion, and the limits of

research: Comment on Landesman and Butterfield.

American Psychologist 44

448-449.

Hansen, D. G. (1976). Slogans vs. rea li tie s- More data needed.

Journal of Autism and Child-

hood Schizophrenia 6

366-367.

Landesman, S., Butterfield, E. C. (1987). Normalization and deinstitutionalization of men-

tally retarded individuals: Controversy and facts.

American Psychologist 42

809-816.

Mesibov, G. B. (1976). Implications of the normalization principle for psychotic children.

Journal

of Aut ism and Childhood Schizophrenia 6

360-377.

Nirje, B. (1969). The normalization principle and its human management implications. In R.

Kugel W. Wolfensberger (Eds.), Changing patterns in residential services or the mentally

retarded (pp. 181-195). Washington, DC: U.S. Government Printing Office.

Rhoades, C., Browning, P. (1977). Normalization at what price? Mental Retardation 15 24.

Throne, J. M. (1975). Normalization through the normalization principle: Right ends, wrong

means.

Mental Retardation 13

23-25.

Warren, S. A. (1975). Tolerance for ambiguity.

Mental Retardation 13 2.

Wolfensberger, W. (1972).

The principle o f normalization in human services.

Toronto: National

Institute on Mental Retardation.

Wolfensberger , W., Glenn, L. (1973).

PASS: A method of the quantitative evaluation o f

human services.

Toronto: National Institute on Mental Retardation.

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Mesibov Normalization is Relevance