ROBERT B.

EDGERTON

ANTHROPOLOGY AND MENTAL RETARDATION:

RESEARCH APPROACHES AND OPPORTUNITIES

ABSTRACT. Although mental retardation is largely a sociocultural phenomenon, anthro-

pological interest in this field has been slow to develop. In recent years, anthropological
concepts and methods have been used in study of the community adaptation of mentally
retarded persons and societal reactions to them. As an illustration, research developments
at the Mental Retardation Research Center, UCLA, are discussed. The need for expanded,
collaborative research by social and biomedical scientists is examined. The research puzzles
include the links between poverty, ethnicity, schools, families and mental retardation, as
well as the nature of intelligence and adaptation.

Anthropological interest in mental retardation was very nearly non-existent

until about twenty years ago, and it remains slight today even though anthro-
pologists are turning their attention to all manner of handicapping conditions
including severe and chronic ones. This inattention is surprising in view of the
substantial prevalence of mental retardation (probably around 3%), and the
fact that scientists from many disciplines now agree that like mental illness
(which has long captured the interest of anthropologists), mental retardation
is a complex of conditions involving interactions between biogenetic and socio-
cultural factors. In the discussion that follows, I shall first briefly indicate why
mental retardation is so thoroughly social and cultural, then describe a line of
anthropological research developed at the Mental Retardation Research Center,
UCLA, as well as additional research directions to which anthropologists and
other social scientists are now contributing, and finally identify some of the
major challenges to anthropology that mental retardation poses.

MENTAL RETARDATION: AN OMNIBUS CONCEPT

Little is taught.about mental retardation in most departments of anthropology

(or sociology, for that matter). Even at UCLA, where graduate courses on the
subject are taught and where anthropology graduate students and post-doctoral
fellows participate in various research programs on the subject, the heterogeneous
nature of the population officially designated "mentally retarded" is seldom fully
comprehended. Every conceivable kind and degree of cognitive impairment occurs
among these people. Some mentally retarded persons are so profoundly retarded
that they have no speech, no testable IQ, and must live vegetative lives under
medical supervision; others are so mildly retarded that they appear to have nor-
mal intelligence until they are required to read or to perform mathematical cal-
culations. In the United States, mental retardation is defined as "...significantly

Culture, Medicine and Psychiatry 8 (1984) 25-48. 0165-005X/84/00810029 $02.40.

O 1984 by D. Reidel Publishing Company.
26 ROBERT B, EDGERTON

subaverage general intellectual functioning existing concurrently with deficits in

adaptive behavior, and manifested during the developmental period (Grossman
1977)." IQ is the essential diagnostic criterion of mental retardation, and "signif-
icantly subaverage intellectual functioning" is defined as an IQ below 70. IQ is
essentially a cultural product, as even psychologists like Carl Brigham (1930),
who once used the test to prove the innate inferiority of immigrant populations,
came eventually to admit. That IQ test performance has been, and still is, largely
a function of cultural experience is no longer disputed in social science. Poor
adaptive behavior, the other diagnostic criterion, is based on cultural judgment -
and subcultural values - to such an extent that when it is applied to any but
the most severely retarded people, it is as purely cultural as any diagnostic
criterion could be.
For more severely impaired mentally retarded persons these cultural issues
of diagnosis are of little significance, although how such persons are responded
to by society is very much defined by cultural beliefs and values. Such persons
are often diagnosed very early in life, even at birth, and in many instances the
etiology of their disability is organic and can be traced to a known chromosomal,
metabolic or physiological anomaly. These children, sometimes called "organ-
ically" or "clinically" retarded, are born to parents of every socioeconomic
status, the wealthy as often as the poor. It is clinically impaired children such as
these that are most often thought of by the public (and our anthropology
students) as typifying the mentally retarded population, but in reality, no more
than 20 to 25% of all mentally retarded persons are like this, and many of these,
like Down's Syndrome people, are capable of considerable social competence.
The remainder - at least 75% - are only mildly retarded, with IQs between 50
and 70, no known etiology, and few physical abnormalities. Many of these
people look and act very much like anyone else. How such children will come to
be diagnosed and how well they will do in school or later in life largely depend
on social and cultural cohditions. Indeed, the etiology of this kind of mental
retardation is thought to be largely social and cultural. For example, children
such as these are born primarily to parents of low socioeconomic status. This is
true in ethnically homogeneous Scotland (Birch et al. 1970) as well as in the
impoverished rural or urban areas of the United States; it has been estimated
that a child born in one of these latter places is fifteen times more likely to be
diagnosed mentally retarded than is a child born to middle-class suburban
parents (Tarjan 1970).
In fact, this kind of mental retardation is usually designated "psychocultural"
or "sociocultural" to indicate the importance of cultural considerations. For
these, the majority of mentally retarded persons, culture and poverty are all-
important. The relationship between sociocultural mental retardation and
poverty was clear a good many years ago as Rodger Hurley (1969) movingly
 ANTHROPOLOGY AND MENTAL RETARDATION 27

insisted. Poverty is still with us and so is mild mental retardation. These facts
have been chillingly documented by Craig Ramey and his associates (Ramey
et al. 1978) at the University of North Carolina who showed that it is possible
to identify children who will need special educational services before or during
grade school solely by information available on birth certificates - mother's
race and education, the month pre-natal care began, survival of other siblings
and the child's legitimacy. The children most at risk were male, Black, and born
illegitimately to mothers with little formal education. Not everything in the
complex of poverty that might lead to mental retardation is cultural in the
strict sense of beliefs or values that influence a child's motivation or style of
learning. Birth injuries, maternal infections, toxins of all sorts, poor nutrition,
injury and disease, among other hazards, may interact with a host of social and
cultural factors to increase the likelihood of a child becoming mentally retarded.
What a society may do to decrease the human suffering and social cost of mental
retardation would appear to be an issue which should receive anthropological
attention.

SOCIETAL REACTIONS TO MENTAL RETARDATION

Western reactions to mentally retarded people have often been brutal. Lycurgus
ordered Spartans to kill the retarded; wealthy Romans, like Seneca, kept re-
tarded persons to entertain his guests, a practice that subsequently became
common in the courts of European royalty (Barr 1913). Later, attitudes were
sometimes tempered with compassion, and as a glance at the images developed
in European literature from Shakespeare to Dickens and Dostoevsky will attest,
mentally retarded persons have been viewed with sympathy and pity as well as
horror and contempt. The same ambivalence was repeated in Western attempts
to provide institutional treatment and training. Beginning in the 19th century
in Europe and the United States, institutions were developed to protect the
mentally retarded against social victimization, but others were intended to
protect society against the moral depravity and eugenic menace that retarded
persons were thought to pose. This latter view came to predominate, especially
in the U.S. where mentally retarded persons were seen not simply as an un-
wanted surplus, but as dangerous and defding.
The reasons for this dismal view of the retarded are complex (Hobbs 1975),
but the belief that the large numbers of immigrants then crowding into rapidly
growing cities were both dangerous and mentally unfit was influential, as was the
ethos of Social Darwinism. Henry Goddard, director of research at the Training
School at Vineland, New Jersey, and Walter Fernald, Superintendent of the
Massachusetts School for the Feeble-Minded at Waverly, were leaders in asserting
that vast numbers of Americans were mentally retarded, and that these persons
28 ROBERT B. EDGERTON

were socially dangerous. For example, Goddard (1912: 101-102) offered this
conclusion about "morons": "The idiot is not our greatest problem. He is indeed
loathsome . . . Nevertheless, he lives his life and is done. He does not continue
the race with a line of children like h i m s e l f . . . It is the moron type that makes
for us our great problem." Others agreed in even more hysterical tones (Wolfens-
berger 1975) and eugenics programs flourished. It became common for either
state law or hospital regulations to require surgical sterilization as a prerequisite
for release from an institution for the mentally retarded. Indeed, as recently
as 1971, 21 states still had involuntary sterilization laws. In 1913, the Mental
Deficiency Act was passed by Congress making it illegal for retarded people to
marry, a prohibition which was still in force in 24 states as recently as 1971
(Hobbs 1975; Krishef 1972). It has been estimated that mandatory sterilizations
were performed on 50,000 persons said to be retarded or otherwise deviant
between 1924 and 1955 (Brackel and Rock 1971).
The institutions in which retarded persons were confined were crowded and
drab at best, and often they were frankly penal, with mildly retarded persons,
convicted of no offense, confined indefinitely, while they labored long hours to
pay for the cost of their confinement. As time passed, more and more reports
accumulated describing the inhumane, overcrowded, unsanitary conditions in
large state institutions, and calling these places "warehouses" where surplus
humans were stored out of the public eye and coerced or drugged into compli-
ance (Biklen 1979; Scheerenberger 1976; Vitello 1977). Appalled investigators
wrote about naked, feces-soiled patients who lay untended on cold floors, or
were tied to benches, or beaten for minor infractions of hospital rules. One who
made such observations count was a Dane, N. E. Bank-Mikkelson, who along
with a Swedish colleague, Bengt Nirje, pioneered "normalization," the concept
that retarded persons should live in a manner as nearly normal as possible.
Bank-Mikkelson's impressions of one large hospital - Sonoma State Hospital
in California - were reported in the San Francisco Chronicle on November 3,
1967. Noting that Sonoma State Hospital was worse than any institution he had
seen in his visits to a dozen countries, Bank-Mikkelson said: "In our country
we would not be allowed to treat cattle like that. Perhaps you cannot treat
cattle this way in your country either - cattle, after all, are useful, while the
retarded are not."
Morally indignant outcries such as these, combined with increased concern
with civil rights litigation and growing evidence that retarded persons developed
more optimally in their own homes than in institutions, led to the development
of a national policy of deinstitutionalization which was mandated by federal
legislation in 1975.
 ANTHROPOLOGY AND MENTAL RETARDATION 29

ANTHROPOLOGICAL PERSPECTIVES

Aside from an occasional historical note, such as one stating that Montezuma,
the Aztec king, kept a large number of mentally retarded people in what resem-
bled a modern zoo (Horsefel 1940), and a brief discussion of mental retardation
on the Micronesian island of Truk by anthropologist Thomas Gladwin and
psychologist Seymour Sarason (Masland, Sarason and Gladwin 1958), little
information about non-Western societies found its way into the literature on
mental retardation. Nevertheless, it was generally assumed that life in non-
Western societies was so simple that people we would regard as midly retarded
would be unexceptional members of their societies; only the severely retarded
would be a problem and they would be killed early in life. The cross-cultural
evidence indicates a more complex reality (Edgerton 1970). Although it appears
to be the case that even very mild intellectual deficits are recognized everywhere,
how these people will be treated varies greatly. Some societies inflicted casual
cruelties and physical torture on mildly retarded people, but other societies,
including many in Central Asia, India and the Middle-East, offered such persons
protected and even favored roles. But no patterns emerged that linked attitudes
toward mental retardation with any apparent demographic, techno-economic or
social structural variables. Yet if the ethnographic record offered little that could
guide research on mental retardation in contemporary Western Societies, ethno-
graphic methods had a great deal to offer (Edgerton and Langness 1978).

Ethnographic Approaches to the Lives of Mentally Retarded Persons

Before Erring Goffman's (1961) influential work on total institutions, sociolo-

gists (Belknap 1956) and anthropologists (Caudill 1958)had used ethnographic
methods to study psychiatric hospitals. When these methods were first used in
a large taospital for the mentally retarded, something of the complexity of patient
life became clear and so did the sadness of institutional confinement. At Pacific
State Hospital in California, 1 the isolated lives of very severely retarded men
who were limited to a ward and a play yard (MacAndrew and Edgerton 1964)
stood in marked contrast to the friendships that sometimes developed between
moderately retarded men (MacAndrew and Edgerton 1966). Other, less severely
retarded people led more varied lives on the large hospital campus where they
had some entrepreneurial activities (Edgerton, Tarjan and Dingman 1961),
formed themselves into elite groupings (Edgerton 1963), conducted dating
activities with surprising decorum and self-control (Edgerton and Dingman
1964), and worried about who they were and why they were forced to stay in
the hospital (Edgerton and Sabagh 1962).
These initial excursions into the ethnography of hospital life produced few
30 ROBERT B. EDGERTON

revelations, but they did document the complex life activities that patients
created for themselves, and they recorded the values, beliefs and hopes of these
people who previously had not been encouraged - or even allowed - to express
themselves freely. Later, other mentally retarded persons would express some
similar views (Bogdan and Taylor 1976; Braginsky and Braginsky 1971), and
others would record far more tragic and horrifying hospital conditions (Blatt
1970). Unlike Willowbrook in New York, where conditions led to a civil suit in
1970 (Rivera 1972), Pacific State Hospital was a humane and therapeutic
institution b y the standards of the time, nevertheless many o f its patients
wanted to live outside - on "the outs" as they put it.
Even before deinstitutionalization began on a large scale, some patients
were released from the nation's large hospitals. Beginning around World War I,
some mentally retarded adults were released, and investigators, such as Farrell
(1915), Wallace (1918), Fernald (1919), and Fairbanks (1933), expected to find
a high rate of failure among them, including widespread anti-social behavior.
They were surprised when they found that the majority of the persons they
located had made apparently satisfactory adaptations to community life. For
example, when Fernald found that only 34.4% of the men and 40.8% of the
women he followed up after release from Waverly had been rehospitalized or
imprisoned (he had predicted that 85% could be expected to meet this fate), he
was so perplexed by this unexpectedly positive social adjustment that he delayed
publication of his findings for two years (Goldstein 1964).
Times change and recent investigators have commonly concluded not only
that the majority of mildly retarded persons achieve a successful adaptation to
community life, but that many "disappear" into the community where they are
presumed to become normally "successful" citizens. As Cobb (1972: 145) has
written: "The most consistent and outstanding finding of all follow-up studies is
the high proportion of the adult retarded who achieve satisfactory adjustments,
by whatever criteria are employed." Despite a few voices of dissent (Begab
1978; Heber and Dever 1970; MacMillan 1977), this point of view has become
an integral part of the conventional wisdom that informs the policy of deinstitu-
tionalization. And yet it is widely recognized that remarkably little is known
about what constitutes "success" and "disappearance," or why some persons
succeed while others do not.
The first description of the life circumstances of mfldiy retarded adults to
employ participant-observation (Edgerton 1967) has been construed by some
readers as evidence of relatively successful community adaptation (Biklen 1979).
Even though 21 of the 48 persons studied were judged to be "completely
dependent" and only three were completely independent, Edgerton (1967)
also interpreted the adaptation of the cohort as a whole in generally positive
terms, but emphasized that their success was very largely a function of their
 ANTHROPOLOGY AND MENTAL RETARDATION 31

ability to find one or more "benefactors" to provide emotional support and

assistance with certain kinds of problems.
There are several reasons why the adaptive successes of failures of mentally
retarded persons attempting to live more normal lives in community settings
are significant. Most obvious is the practical issue of determining what kinds of
services and supports are necessary to optimize these persons' chances; it has been
estimated that in 1977 the direct costs for that year alone amounted to about
10 billion dollars (Kurtz 1977). Another reason is the elucidation of "normal"
social adaptation by comparison with the adaptive processes of handicapped
persons. And finally, there is an important unresolved epidemiological question.
Until recently, it was assumed that the prevalence of mental retardation was
3%, but based on recent research, particulary that of sociologist Jane Mercer,
this estimate has been challenged. Mercer (1973), like others before her, noted
the tendency of many mentally retarded persons, especially mildly retarded
persons, to "disappear" into the normal population after they leave school
(Gruenberg 1964; Macmillan 1977).
In its report of 1970, the President's Committee on Mental Retardation
addressed itself to the need for more information concerning the lives and
education of children in the inner city. Concluding that U.S. society was "beset
by racism, poverty, alienation, and unrest," the Committee asked how it might
be possible to improve the quality of education, and the quality of life, in our
inner-city neighborhoods. The report of the Committe, entitled The Six-Hour
Retarded Child, was captioned as followed: "We now have what may be called
a 6-hour retarded child - retarded from 9 to 3, five days a week, solely on the
basis of an IQ score, without regard to his adaptive behavior, which may be
exceptionally adaptive to the situation and community in which he lives."
If it is true that most mildly retarded people cease to be retarded once they
leave our schools, then the correct estimate of prevalence would be more like
1% as Mercer believed, and the implications for diagnosis, education and social
planning would change radically.

The Mental Retardation Research Center, UCLA - Anthropological Research

Our work at UCLA has focused on the everyday lives of mentally retarded
adults after leaving school. We have attempted to chart the course of their
various adaptations to the demands of community living. We have asked whether
they have indeed disappeared into the population and if not, why? Our research
stategy has been to concentrate on the lives of those mentally retarded persons
most capable of living independently, that is, o f "disappearing." These people
typically have IQs in the 60s, no restricting illnesses or physical disabilities,
no major speech impairment and no record of psychiatric disturbance. One
32 ROBERT B. EDGERTON

sample of people like these has been studied on and off since 1960; several
samples of persons studied in the early 1970s are still being studied; others
have been added over the years. During this time we have used participant-
observational techniques to study the lives of several hundred mildly retarded
adults, young and old. In recent years, we have added some adolescents and
children to our samples, some more moderately retarded people, and, beginning
in 1979, we have included a sample of mildly retarded Afro-American persons
living in inner-city neighborhoods. Because our approach must be long-term
if it is to succeed, we are continuing our research with most of these popula-
tions. We have attempted to examine all aspects of these lives, from the practi-
calities of life, through the intricacies of interpersonal relationships, to the
hidden hopes and anxieties that make up their dreams and fantasies (Edgerton
in press).

Some General Findings

Our most fundamental finding about mildly retarded adults living in the com-
munity is that, in general, their lives are complex, partly concealed from
investigation and highly changeable. Some individuals live quite simple, regi-
mented lives largely confined to one room and a television set. Even these
people are remarkably complex in their adaptive uses of fantasy, including
dreams, imaginary roles and friends, and innovative ideational systems (Turner
1983; Turner, Kernan and Gelphman in press; Graffam and Turner in press;
Peters 1983).
But increasing numbers of mentally retarded persons live more independently
and have more varied acitvities; their lives are complex by any standards. They
have friends and engage in varied recreational activities, they marry and some
have children. They work, at least some of the time, and they are quite adept
at concealing some information about themselves. This concealment often
involves withholding discrediting information or presenting a more desirable
self. Not everyone succeeds in these deceptions, but most succeed well enough
that we now believe that it takes at least one year of intensive participant-
observational research before even minimally accurate baseline data about a
person can be assembled. And some people will continue to surprise us for
years. One man, for example, continues to puzzle and amaze us after 24 years
of on-and-off research contact shared among at least 6 anthropologists, including
2 women (Whittemore 1983).
That this degree of concealment and complexity exists is an important
cautionary note for anyone who would reach conclusions about these people
too rapidly, and so is another fundamental and ubiquitous pattern, change. Only
a minority of these persons - those who live in more restricted and secluded
 ANTHROPOLOTY AND MENTAL RETARDATION 33

settings - present a stable, unchanging pattern of life. The majority are anything
but stable. Their lives often change abruptly, dramatically and unpredictably.
Crises of all sorts occur in their lives, just as they do in the lives of the rest
of us, but mentally retarded persons seldom have resources that can quickly
stablize their lives. Agencies are slow to react, supporters are unreliable, and
credit cards, bank accounts, insurance policies and union membership are
typically absent altogether. As a result, a person who has lived a routine, stable
and pleasant life for 5 or 6 months may be plunged into despair and homeless-
ness overnight. A month or so later, however, some support may be generated
and a return to a more positive adaptation is common. For example, a mildly
retarded young woman lived in a nice apartment, had a job and a boyfriend,
seemed happy and confident about the future. Six weeks later, this woman had
lost her job, was evicted for non-payment of her rent, and found that she was
almost 3 months pregnant; her boyfriend abandoned her, taking her furniture
and her few valuables with him. She spent two nights homeless and penniless,
became severely depressed, and attempted suicide. With help, she was hospi-
talized.
One might have expected her to become a "failure" in the process of com-
munity adaptation, one of those unfortunates who is shunted off the track
of "success" in achieving a more normal life to a restricted life in a group home
and tedious days in a sheltered workshop. However, with help from an agency,
a month later she had a new apartment, was receiving SSI (supplemental security
income), and did not regret having an abortion. Two months later she was en-
gaged to be married to an attractive man of normal intelligence and appeared
to be as happy and healthy as she had been before.
This pattern emphasizes the caution that program planners must exercise
in avoiding consequential intervention in the lives of such people based on
either a period of conspicuous success or failure. Both are likely to be ephemeral
and changing. The pattern of adaptation is anything but stable or linear; it
oscillates, sometimes rapidly and dramatically and often with as many ups
as downs. It is only after considerable time - often a decade or more - that
the pattern tends to smooth out with fewer and less dramatic changes in level
of adaptation. Perhaps this is due to a kind of delayed social maturation, but
more likely it reflects the fact that these people have far less experience in social
living than most nonretarded people their age, have undergone counter-produc-
tive socialization experiences that increase dependency and decrease competence,
and lack many of the resources that others may call upon in time of crisis.
There also are some substantial and largely unrecognized barriers that re-
tarded adults must hurdle before they can live more normal lives in their com-
munities. Some potential barriers are rather easily overcome. For example, de-
spite some mistakes and difficulties, many of the routine demamds for everyday
34 ROBERT B. EDGERTON

competence are met fairly well by most mildly retarded adults. Shopping for
groceries in super markets is one example (Levine and Langess 1983), and the
ability to communicate adequately in most social contexts is another (Sabsay
and Kernan 1983). Life is not always trouble-free however. Quite a few people
are victimized; they are cheated, robbed, mugged, raped, deceived and exploited.
Some suffer phychiatric disturbances and others, a minority, offend community
standards or commit crimes (Edgerton 1982). Finding a job and holding it
can also present a problem. The adults we have studied have had considerable
difficulty competing for jobs, and as economic conditions have worsened, these
difficulties have increased (Kernan and Koegel in press). If it were not for the
availability of SSI, most of the persons we have studied could not maintain
themselves in community living. As the original follow-up study of patients
released from Pacific State Hospital noted, efforts to deny, or otherwise deal
with, the stigma of being labeled and institutionalized as "mentally retarded"
were fundamental for these people. In 1960-61, their efforts to "pass" as
normal were as continuous as they were unavailing; yet in 1972-73, the effects
of the label had lessened considerably (Edgerton and Bercovici 1976). Labeling
and its consequences remain central concerns in this field despite criticism of
the labeling, or "societal reaction," perspective (Sagarin 1975; Gove 1975).
The utility of this approach in the field of mental retardation has been evaluated
and debated (Hobbs 1975; MacMillan, Jones and Aloia 1974), and specific
applications of the perspective, such as that by Jane Mercer(1973), have come
under scrutiny (Gordon 1975). These and other critical reviews of the literature
on the effects of labeling on mentally retarded persons have led to general
agreement that while the label "mentally retarded" is typically avoided as
being stigmatizing, the effects of this label on the social competence of labeled
persons have not been clearly demonstrated (Guskin 1978; Rowitz 1981).
Most reviewers point out that research on the effects of labeling has greatly
over-simplified a highly complex, non-linear, interactive process. For example,
little attention has been given to the experiences that precede labeling and may
have produced both low self-esteem and social incompetence prior to the im-
position of any label. Also, the possible presence and salience of more than
one stigmatizing label, and more than one labeler, have been inadequately
examined and so have possible differences in labels and labelers that are specific
to particular settings. In addition, the predicted effects of labeling usually
have not been clearly specified, and the duration of the presumed effects, as
well as the mechanisms that are presumed to create and maintain them, also
remain uncertain. Research which examines the effects of the process of labeling
throughout a person's life experiences over a substantial period of time has not
been attempted at all.
There can be no doubt that the stigma of mental retardation can be shattering.
 ANTHROPOLOGY AND MENTAL RETARDATION 35

but the emphasis on labeling as an event followed by more or less inevitably

deleterious consequences has deflected attention away from the mechanisms
that accompany labeling and may actually bring about not just sitigma, but
incompetence as well. Labeling is not simply a clinical or administrative event,
it is a process of socialization. The complex of expectations and practices that
typifies socialization for incompetence often begins with restrictions that
deny mentally retarded children access to experiences that are commonplace
for ordinary, nonretarded children. For the retarded child, certain experiences
are defined as "too dangerous" or "too difficult." Not all parents restrict experi-
ence in the same ways, but in one way or another most parents deny their
mentally retarded children the opportunity to have experiences that they
would allow, or even encourage, in their "normal" children. Subtle joking,
teasing and cooperative problem solving based on nuances of language and
shared knowledge are often replaced by strategies of direct intervention in
which the parent steps in and completes "difficult" tasks for the retarded child.
There may also be overt restrictions that avoid risk and limit responsibility in
normative activities like rough and tumble play, sports, bicycle riding, choice
of playmates, the need to care for household pets, or simply the use of tools
or kitchen knives (Edgerton 1983).
The experiences of adolescents and young adults can be even more circum-
scribed than those of children. At this age, sexuality is likely to be restricted,
along with smoking, drinking or operating motor vehicles. One example should
serve. When the retarded son of well-educated and affluent parents first expressed
an interest in alcohol, his father encouraged him to drink as much as he possibly
could so that the resulting extreme nausea and hangover would teach him never
to drink again. It did. But when his nonretarded brother expressed a similar
interest, his drinking was closely instructed and supervised by his father so that
he could learn how much alcohol he could soberly tolerate (Koeget 1978).
It can be hypothesized that these kinds of restrictions, arguably reasonable
for moderately retarded children, actively reduce the social competence of
more mildly retarded children. Indeed, some parents come to understand
how their socialization practices may have been unwise, especially as their
children become adults. One such mother, for several years a staff member
of our research group, has learned to become an observer of her 25-year-old,
mildly retarded daughter, Colette. Referring to her past restrictions on Colette's
behavior and freedom, and the conflicts that followed, she concluded (Kaufman
1980:22): "There are many kinds of success: The one that is most meaningful
for her may turn out to be centered around all-night sessions with friends,
a baby or two, and SSI for income. Ten months ago I would have shuddered
at that scenario. Today I would be a good deal more accepting if it occurred."
When mildly retarded young adults leave their parents' homes to live in
36 ROBERT B. EDGERTON

"group homes," their access to normal experience usually continues to be

restricted. Certain behaviors are still seen as too dangerous or difficult, but
in addition to these reasons for restriction, group home caretakers are typically
under great pressure to manage and control several "residents" with limited
time, energy and expense. The result has been described before. Conditions
are often dreadful, with residents' activities every bit as restricted as they would
be in large institutions (Edgerton 1975). For example, retarded persons are
isolated from nonretarded persons and from ordinary experience. Residents
are typically compelled to eat together, work together and even have "recrea-
tion" together. As Bercovici (1981) has put it, they are "herded," with few
opportunities to plan, make decisions, take risks or make mistakes. Even time
is planned and structured for them. Moreover, it is common for residents to be
denied access to such everyday experiences as using a telephone, doing house-
hold chores, using money, making friends or planning for tomorrow.
The regimentation and restricted autonomy of community residential and
vocational settings are reinforced by the use of subtle practices, such as requiring
residents to call caretakers "Mom" or "Pop" while residents are openly referred
to as "kids," continuing the familiar parent-child roles of authority and depen-
dency. More coercive tactics are also employed so that a rebellious resident may
be subjected to threats, including transfer to a large state hospital, loss of a
desired job or friend, or the termination of "benefits" such as SSI. Mentally
retarded persons are easily cowed by threats such as these because they overesti-
mate the legal authority of caretakers to control their lives, but they also fear
their personal power and with good reason. When other means of assuring
compliance fail, caretakers sometimes employ such practices as over-medicating
residents with neuroleptic drugs, physical abuse and "restriction" to a locked
room. When, as is usually the case, there is no one in the "outside" world to
whom the retarded person can appeal, compliance is the only alternative. Socia-
lization for compliant dependency and incompetence, then, can continue
throughout life. Parenthetically, anthropologist Eugeen Roosens (1979) found
some of these same patterns when he studied the so-called therapeutic commu-
nity of Geel in Belgium.
The experiences of many of the adults we have studied make it clear that
there can also be advantages in accepting dependency and restriction as a way
of life. For example, there is no need to climb out of bed early each day, how-
ever ill or tired one might feel, to cope with the demands and tedium of the
work-place, to solve vexing practical problems of money management, bill-
paying and the like, or to save for tomorrow, groom oneself well, plan ahead
and adjust to the demands or requests of strangers in a complex and competitive
world. For many people, a set routine, few demands, television viewing and
fantasy can amount to a preferred way of life, especially when the alternatives
 ANTHROPOLOGY AND MENTAL RETARDATION 37

are so difficult and when one's entire life has been spent in roles based on
dependency and restricted freedom.
The various agencies mandated to provide services to mentally retarded
persons sometimes provide essential financial, residential and vocational assis-
tance despite awesome caseloads and shrinking budgets. Yet just as often, they
may create barriers of their own, partly by their requirements for eligibility,
partly by their inacessibility, but all too often by the common practice of
judging the lives of their clients by unyielding middle-class values. As a good
many experienced social workers realize, there are many culturally acceptable
styles of life in our society that diverge drastically from middle-class values.
Many mentally retarded persons establish one of these styles of life and find
it satisfying. This is hardly surprising since most mildly retarded persons come
from low socioeconomic statuses and ethnic minority backgrounds: However,
there is still a strong tendency among persons who plan for and measure the
community adaptation of retarded people to behave as if there were but one
culture - a middle-class one - and that "normalization" and success in com-
munity living should therefore be judged by middle-class standards of speech,
dress, hygiene, nutrition and even recreation (Edgerton 1981).
How well persons in our samples deal with these and other barriers varies
greatly. Some become independent with little assistance, but others never do,
despite all manner of social support. Their needs for support in coping with
life's routines or its emergencies varies greatly, as does the availability of sup-
porting individuals or agencies (Koegel 1982). Some individuals are alone with
no one to turn to, others are indulged by overly-concerned parents; a few
are exploited by friends or relatives. In the Afro-American community, mildly
retarded adults typically receive aid from their parents and kin, but they often
reciprocate importantly in terms of child-care, housekeeping, cooking and finan-
cial contributions (Mitchell-Kernan and Tucker in press).
While it does appear ot be true that the quality of adaptive behavior improves
over time, this does not mean that most people "disappear" by becoming un-
exceptional members of a normal community. Some people do display such
social competence that they readily become indistinguishable from the non-
retarded people around them, but most fall well short of this. The majority
whom we have studied continue to receive aid as mentally retarded persons and
to depend for their adaptive success on the occasional or regular assistance
of others. Even those who are not receiving aid as mentally retarded persons
often live in highly distressed conditions of isolation, poverty and poor health
(Edgerton 1983). This pattern is true in Black inner-city neighborhoods as
well as White suburban areas. There are some cultural differences that encourage
Black mentally retarded adults to live more normal lives, and as a result, some
live more normal-appearing lives than most persons we have studied in our
38 R O B E R T B. E D G E R T O N

White retarded populations. Many are well integrated into the networks of
normal siblings, cousins or friends, and they are more often expected and
encouraged to have children. In general, the fact that they are perceived to be
"slow" or to have poor judgment does not exclude then from many normal
social roles (Koegel and Edgerton in press).
This is not to say that all Black mildly retarded adults lead lives which are
indistinguishable from others in their communities - many are as restricted
and isolated as the most protected of the White mildly retarded individuals
with whom we have worked in the past. Their adaptive handicaps may be
minimized, but they continue to be seen as "handicapped." Parents of children
labeled as mentally retarded by schools or other agencies typically acknowledged
that their children were "slow" or retarded. Many recognized this retardation
before their child was officially labeled; others suspected it. Almost all agreed
that as young adults their children have continued to display deficiencies in
adaptive behavior. Many of the retarded persons label themselves as-"slow"
and recognize their deficiencies in academic skills and everyday life. In these
matters, Black inner-city residents do not differ from those whom we have
previously studied in White suburban neighborhoods. In our samples, evidence
to support the "six-hour retarded child" hypothesis was found only occasionally
and inconsistently (Koegel and Edgerton 1982). Since participants who were
not receiving services from the mental retardation service delivery system had
as many problems in adaptive behavior as those who were receiving services,
it cannot be concluded that formerly labeled persons who "disappear" from
agency roles necessarily possess the ability to live as normal members of their
cultural community.
If our findings are borne out, estimates that the post-school age prevalence
of mental retardation is only 1% will have to be revised upward. The impli-
cations for our society are serious. The deinstitutionalized mentally ill are
all too visible as the "street people" of our major cities; the mentally retarded
are ordinarily hidden from view, but they have seldom disappeared.

OTHER SOCIAL SCIENCE APPROACHES

Mental retardation has not become a glamorous field for research, but it is
no longer ignored by the social sciences. There are 12 university-based mental
retardation research centers in the U.S.; in many of these centers, and elsewhere,
sociologists, social and developmental psychologists and specialists in education
are contributing exciting research. 2 Some of this research employs a variety of
ecological methods and perspectives (Wills 1973; Sackett 1978; Landesman-
Dwyer, Berkson and Romer 1979; Schoggen and Schoggen 1981) to examine the
activities of mentally retarded people in residential settings or larger community
 ANTHROPOLOGY AND MENTAL RETARDATION 39

settings (Stucky and Newbrough 1983). Others have concentrated on the pro-
cesses of community adaptation and deinstitutionalization (Henshel 1972;
Bruininks et al. 1981 ; Butler and Bjaanes 1983). Some, like sociologist Stephen
Richardson, have used longitudinal research designs to follow a cohort of men-
tally retarded persons over a period of years (Richardson et. al. 1983).
Other sociologists like Bernard Farber (1968) and Andrew Scull (1978)
have taken a broad societal and economic perspective to examine mentally
retarded people as a "suplus," buffeted about by the unwillingness of others to
pay for their welfare. Another group of sociologists has employed life history
and phenomenological approaches that help them to portray the lives of retarded
people from the "inside" (Jacobs 1980; Goode 1982; Bogdan and Taylor 1982).
Research approaches and topics like these have increasingly engaged the interest
of social scientists, including anthropologists, but there are other topics of
major significance that anthropologists have largely ignored.
One such topic is the effect of early experience on the development of
social and intellectual competence in children. This research focus, with its
practical goal of early intervention to alter developmental outcomes, has gen-
erated great interest among behavioral scientists (Begab, Haywood and Garber
1981), and several important research projects have been undertaken as a result.
Yet despite anthropologists' traditional interest in studies of socialization,
including their many concerns with family interaction, styles of communication
and parental expectations, this research has seldom attracted anthropologists
as collaborators.
The record differs only slightly with regard to research on the process of
education for mentally retarded children. Anthropologists have been vitally
interested in various aspects of schooling in many societies, including our own
(Johnson 1981), yet despite the obvious relevance of cultural perspectives in
the school failure of ethnic minority children and the interpersonal challenges
of mainstreaming mentally retarded children, anthropologists have only rarely
contributed to research on these issues. An exception is the innovative use of
culturally familiar teaching approaches with slow-learning Hawaiian children
by psychologists Roland Tharp and Ronald Gallimore, and anthropologist
Cathie Jordan (Tharp et al. in press). This approach is now being extended to
Navaho children.
Anthropologists have also failed to contribute to research on intervention
strategies designed to improve the quality of adult interaction. There are nu-
merous training programs throughout the country that attempt to teach adaptive
skills, but these programs have not been developed or closely monitored by
anthropologists. Given anthropological interest in the effects of environments
on behavior, this, too, is an unfortunate omission.
40 R O B E R T B. E D G E R T O N

SOME RESEARCH CHALLENGES

Anthropology has begun to tip-toe its way toward involvement in the study of
mental retardation. Some of the beginnings of this interest have been discussed
earlier, along with some other important research topics that anthropology has
inexplicably ignored. I would like to close by suggesting that there are research
problems in mental retardation that are far more than opportunities for anthro-
pologists to practice their craft, they are instead significant social and intel-
lectural problems that manifestly call for the application of anthropological
methods and concepts. This disciplinary plea should not be misconstrued.
Other social science fields can and do use most of the methods and concepts
that constitute anthropology's armamentarium; still, anthropologists are m o r e
likely than other social scientists to utilize a cross-cultural perspective that
includes the range of human cultural forms and to employ participant-observa-
tional methods for sufficient periods of time to enable the people whose lives
are of interest to speak for themselves.
Even if this is not admitted, there can be little argument about the obvious
need to make much better use of data from all societies to illuminate the cir-
cumstances that lead to varying definitions of mental retardtation and reactions
toward it among the societies of the world. Unfortunately, new data have
accumulated in driblets (Dentan 1967; Briggs 1970; Peters 1979), and the
concentrated application of cross-cultural data to contemporary problems
still lies in the fulture.
One of the greatest challenges to anthropology is the undeniable linkage
between mental retardation and poverty (Richardson 1981). So tragic in the
afflicted individuals and so costly for mankind, most mental retardation has
its roots in poverty. The study of people in poverty is part of anthropology's
tradition, but large-scale multi-disciplinary research is not, and that is the rub.
If anthropologists were to study social competence among the very poor, as
Rena Gazaway (1969) did in Appalachia, they could surely be helpful, but
until they collaborate with other scientists, their efforts will yield less than
they might. Poverty is complex-it is perhaps a complex. It requires the atten-
tion of sociologists, developmental psychologists, pediatricians, epidemiologists,
pharmacologists and others if its constituent parts are to be separated and
understood.
Lead poisoning can serve as an example here. The poor, whether in dete-
riorated inner cities or rural areas, are at great risk for lead intoxication due
to leaded gasoline fumes in the air, lead dust, lead paint, lead water pipes, lead
smelters and other industrial plants or sniffing leaded gasoline. It now appears
that very small amounts of blood lead (25 micrograms per deciliter of whole
blood), welt below levels previously thought safe, may be implicated in the
 ANTHROPOLOGY AND MENTAL RETARDATION 41

etiology of mental retardation (Rutter and Jones 1983). Yet, as Milar et al.
(1980) noted, it is still not clear how lead intoxication and resulting mental
retardation can be separated from a larger complex of circumstances, including
lowered parental intelligence, inadequate caretaking, malnutrition and many
other factors.
Another example can be taken from the socialist experiment that attempted
to equalize academic opportunity in postwar Warsaw. Largely destroyed in the
Second World War, Warsaw was rebuilt in an attempt to overcome the class
stratification of prewar years. When the city was reconstructed, people of all
classes and occupations were sacttered evenly throughout the city, and migra-
tion to the city was controlled in order to maintain this pattern. The city was
organized around neighborhoods which shared similar apartments, cultural and
health centers, stores and recreational facilities. The schools were the same as
well. Since similar schools would now serve children from equivalent social
background (despite their parents' backgrounds), a research team of Polish and
American scientists asked whether children in postwar Poland would be more
equal in IQ and academic achievement than was the case in prewar Poland.
The answer, in brief, is no. Despite all these dramatic efforts to equalize living
conditions and schooling for Polish children, IQ and academic achievement
measured in 1974 continued to be strongly related to parental education and
occupation (Firkowska et al. 1978). Something in the micro-cultures of these
better educated families continued to make a difference. It was not poverty
as such, it was something more subtle that lasted after poverty had been largely
neutralized.
A final example comes from the 238 inhabitants of the Appalachian hollow
of Duddie's Branch, f o r whom poverty was truly a fact of life (Gazaway 1969).
These people were malnourished, diseased and polluted in almost every imagin-
able way. They were isolated from the outside world and from one another,
having few groups or occasions that brought them together as a people. Perhaps
as a result, they could not read, tell time, make change or cope with any of the
other skills necessary in the outside world of modern America. Were all these
people mentally retarded, or was their culture simply different, but adaptive?
The answers are yet to come.
This leaves us with the most basic question. What are intelligence, competence
and adaptive behavior? The notion of intelligence as a reified entity, like "g,"
measurable on a linear continuum and inherited, is losing ground rapidly. In its
place has arisen a multidimensional conception of intelligence, or competence,
that includes many attributes of experience, motivation, attitudes and the like
that were once "outside" intelligence. Now they are, as Haywood and Wachs
(1981: 120) put it, "part and parcel of the concept of intelligence." How intel-
igence arises and is used by different people, from the people of Duddie's Branch
42 ROBERT B. EDGERTON

to the navigators of Truk, so intriguingly described by Gladwin (1970), remains

an open question. But if there is to be an answer to this question, anthropologists
must help to provide it.
Finally, I must say that there is an emerging consensus about mental retarda-
tion. It is that the environment, however mysterious the workings of its many
influences, has great effects on intellectual development, but these influences
must always operate upon organisms that may well suffer as yet undeterminable
central nervous system dysfunction. The research problem, then, is one of en-
vironment-organism interaction, and as such, it is not likely to be solved, nor
even very much advanced, by any one discipline. On the contrary, many dis-
ciplines must cooperate if marked progress is to result. In this sense, mental
retardation is an exemplar for behavioral science. It is no longer the case - if
indeed it ever was - that any single discipline can solve a complex problem of
human behavior. Until the many behavioral and biomedical scientists learn to
collaborate effectively, the puzzles of mental retardation, like those in many
other fields, will remain unsolved.

Departments of Anthropology and Psychiatry

and Biobehavioral Sciences
University of California, Los Angeles

NOTES

I gratefully acknowledge research support from NICHD Grant No. HD 04612, The Mental
Retardation Research Center, UCLA, NICHD Grant No. HD 09474-02, The Community
Context of Normalization, and NICHD Grant No. HD 11944-02, The Community Adapta-
tion of Mildly Retarded Persons. My thanks go to all my colleagues in the Socio-Behavioral
Research Group, past and present.
1 Located in Pomona, California, it is now called Lanterman State Hospital.
z Funded by the National Institute of Child Health and Human Development.

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