Sot. Sci. & Med. Vol. 15B.p~. 25 to 30 Pergamon Press Ltd 1981. Printed in Great Britam

DWARFISM AND SOCIAL IDENTITY: SELF-HELP GROUP PARTICIPATION

JOAN ABLON

Medical Anthropology Program, Departments of Epidemiology and International Health and Psychiatry, University of California, San Francisco

Abstract-This paper describes a specific process relating to destigmatization and social identity which is a chief dynamic operative in a self-help group for dwarfs, Little People of America. In our society persons of abnormal short stature typically experience varied forms of stigmatized and stigmatizing social interactions within the average sized world. Data are presented here from a recent study of dwarfs and their families which examined a variety of dimensions of the dwarfism experience and the impact of self-help group membership on social identity and life style. It is suggested that a cognitive restructuring of self-image occurs through the process of forced objective perception of others who share a similar physical condition. This acceptance of self-identity and the physical identification of dwarfism then allows the person to lead his/her life more happily and effectively.

INTRODUCTION

Non-professional self-help groups have long provided a social and therapeutic resource for positive reconsti- tution of identity for the stigmatized and alienated. The remarkable burgeoning of self-help or mutual aid groups in recent years has forced professionals to take note of these indigenous community resources, and begin to seriously evaluate their proclaimed and often obvious successes in “treatment”.

Various social, psychological and, more rarely, cul- tural processes and properties of these groups are now being postulated by researchers in a newly devel- oping literature [l-6]. I propose in this paper to examine one specific process relating to destigmatiza- tion and social identity which I see as a chief thera- peutic dynamic operative in a self-help group for dwarfs, Little People of America. The data reported here have resulted from a recent study conducted by the author which examines a variety of dimensions of the dwarfism experience and the impact of self-help group membership on social identity and life style. The analysis presented below is based on the author’s observations at meetings and social events of Little People of America over a three-year period and sys- tematic in-depth interviews over this period with 25 Adult LPA members in a West Coast metropolitan area.

DWARFISM

Dramatic and highly variable attitudes toward people of abnormal short stature are recorded in ancient records and art forms around the world. Por- traits and representations of dwarfs are found in Egyptian, Greek, Roman and Mayan and other Pre- Columbian New World Cultures. Likewise there is a rich folklore over the world detailing the adventures of mythical elfin figures. Such persons were either highly valued and placed in special roles as deities, jesters, acrobats, keepers of jewels or precious objects, or in contrast, they were discriminated against as being ill-omens or abominations [7-91.

Clinical definitions of dwarfism include persons 4’10” and under. There are more than 100 types of dwarfism differing in etiology and physical character- istics. Estimates of the number of dwarfs in the United States range from 20,000 to 100,000 [lo, 111. A common form of dwarfism and the most numerous in the membership of Little People of America are achondroplastic dwarfs, persons of disproportionate body build, i.e. with an average sized head and torso and unusually short arms and legs [12]. Achondro- plastic dwarfs typically have expectations for normal intelligence, and although some individuals experi- ence leg and back problems which may require repeated surgeries, achondroplastics generally are able to engage in the same range of occupations as average sized persons [ 131. The barriers to normative lifestyle expectations which exist for most dwarfs are in the main social, rather than logistic. Special stools, automobile extenders and other physical devices allow most little people to work and recreate in the same modes as the average sized population. How- ever, attitudes of potential employers, school and workmates, and the general public often serve to set dwarfs apart as distinct kinds of functioning persons and to create expectations for lower or special levels of performance and general ability than are true for other people.

The clinical complexities of abnormal short stature have been widely explored in the medical literature with emphasis given to endocrine and orthopedic concerns. In contrast, the literature dealing with the psycho-social dimensions of short stature is relatively meager. Most reports summarize observations made or results of psychological tests of patients, ordinarily children, in various hospital or clinical caseloads. It is difficult to generalize from these studies because they report on discrete types of short statured persons with each population exhibiting very different physiogno- mies and accompanying health expectations. For example, hypopituitary dwarfs, commonly called “midgets” [14], may benefit from growth hormone treatment. and achieve normal or near normal height, while most dwarfs cannot expect medical knowledge

25

26 JOAN ABLON

or assistance to increase their stature. Hypopituitary dwarfs are of proportionate body build, and while they may often be taken for persons younger than their age, they do not differ greatly from the average sized population in appearance. In contrast, achon- droplastic dwarfs are readily identifiable. In accord- ance with these realities the social stimulous value of differing types of dwarfism must be taken into account. The daily life experiences which may have determined specific features of personal identity for most dwarfs, whatever their physical type, have not been chronicled. The reader is directed to Weiss for an overview of the existing literature [lS].

Most physicians know very little about the physi- cal, psychological or social complexities of dwarfism. Interviews reflect, in fact, that clinicians have signifi- cantly contributed to the psycho-social problems of their patients and families. Often the most traumatic aspects of the birth and development of a dwarf child have been related to doctors’ ill advised and even tactless statements to the family. Expert clinical and social resource referrals were rarely given. Had fami- lies been provided with realistic expectations for their children’s development and career potential, in most cases parents would have been saved from consider- able grief and worry. Significantly those families who at the earliest instance following birth were referred to the Parents Group of Little People of America have had the most successful adjustment in dealing with their own feelings and the physical and social prob- lems of their child.

DWARFISM AS A STIGMATIZED CONDITION

Dwarfism characteristically has constituted an irre- medial and stigmatized condition in American society where abundance of size and quantity in most aspects of life is highly prized. The condition of profound abnormal short stature can in only a small proportion of cases be corrected. Likewise, the daily problems of life caused by a ridiculing social milieu scarcely can be prevented by professionals. The psychosocial im- pact of the birth of a dwarf child may ricochet throughout family and community life, and the impli- cations for the total family and its internal and exter- nal relationships may be marked and often serious. Problems and coping patterns of individuals and family members vary, but most dwarfs have shared the same generalized painful kinds of stigmatized and stigmatizing experiences, whatever their socioecon- omic backgrounds.

Goffman Cl63 in his classic work, Stigma, has care- fully outlined the characteristics and processes of social stigmatization. Says Goffman:

Society establishes the means of categorizing persons and the complement of attributes felt to be ordinary and natural for the members of each of these categories.. While the stranger is present before us, evidence can arise of his possessing an attribute that makes him different from others in the category of persons available for him to be, and of a less desirable kind-in the extreme a person who is quite thoroughly bad, or dangerous, or weak. He is thus reduced in our minds from a whole and usual person to a tainted, discounted one. Such an attitude is a stigma, es- pecially when its discrediting effect is very extensive; some- times it is also called a failing, a shortcoming, a handicap”

c171.

While most conditions which constitute stigmas in American society are ones which make their presence known gradually or accidentally through conver- sation or increasing acquaintance, dwarfism in most cases is an immediately apparent condition with a dramatic negative social stimulus value. The first identity characteristically projected is “dwarf”. All others follow. This immediate apparency of the con- dition is the crucial element for the discussion which follows.

LITTLE PEOPLE OF AMERICA

Little People of America, Inc. was founded by a Hollywood entertainer, Billy Barty, in the late 1950’s and the organization was formally incorporated in 1961. Little People of America today has a national membership of about 3000 persons, composed of dwarfs and their families, and holds regular meetings on national, district and local levels. Members rep- resent all socio-economic categories, educational backgrounds, and occupations. Weinberg [ 181 to date has provided the most complete description of the organization and its goals and functions. Only in recent years has this group become known to the gen- eral public or even to professionals who increasingly have come to use it as a very valuable referral resource.

Little People of America sponsors many types of activities and serves a great variety of purposes for its members. The by-laws state that “The purpose of LPA is to assist its members in adjusting to the social and physical problems of life caused by their small stature through mutual assistance and the personal examples by each of its members”. The by-laws further note that LPA was organized by a concern with “the need for people of small stature to become useful members of society through education, employ- ment, and social adjustment, and to focus public attention to the fact that the magnitude of any physi- cal limitation is a function of attitude of both the small and the average-size person” [19]. The varied functions of LPA and the energetic character of the organization are most in evidence at the annual con- ventions where hundreds of dwarfs and their families convene for social and recreational activities, work- shops on varied topics, and medical examinations and consultations by specialists from Johns Hopkins Hos- pital and other institutions over the country with par- ticular interests in problems of growth and related areas.

The format and nature of local or chapter LPA activities differ in significant ways from those of many other mutuai aid groups where members share a specific health-related problematic condition. Perhaps one of the most significant differences is that in local LPA gatherings there are no direct discussions of the physical nature of the short stature shared by members nor is there any formal or ritualized relating of members’ painful personal experiences connected with the condition, Regular LPA meetings are struc- tured business meetings with a social hour following. Picnics or holiday events likewise are forthright social occasions. The activities constitute a coming together of persons from very different socio-economic statuses and professions who share one highly significant physical condition. They then return to their own

Dwarfism and social identity 21

divergent worlds, worlds common only in that they titular identity or situation in his own mind, and also are constituted by average sized persons. It should be to legitimize the condition to society at large. Some noted that despite the differences in socio-economic groups promote educational activities to change pub- background, all members to a greater or lesser degree lic attitudes, while others sponsor social and political bring a history of social disenfranchisement because campaigns to change laws and practices in regard to of their short stature. those who exhibit or share the condition.

On the face of it, the social dimension of LPA is the most significant for members. Besides the opportunity for immediate social interaction and recreational events, is the expectation that members might meet potential spouses through the organization. This aspect is highlighted at the national conventions at which time there is an urgency to take the most advantage of a field of potential mates of small stature [20]. Indeed almost all married persons in my sample met their spouses at annual conventions. Most infor- mants regard LPA as primarily a social club. How- ever, given the prejudices against physical difference in this society, the social dimension of LPA typically offers members their first and perhaps only oppor- tunity for dating or marriage. Thus LPA may offer the primary avenue to a chief ingredient for healthy identity formation, the establishment of an intimate relationship, which is an ultimate validation of self- worth for many. The therapeutic value of this type of social opportunity appears to be substantial, accord- ing to members’ accounts of their experiences at con- ventions.

The author has described elsewhere how introspec- tion and behavioral change come about in Al-Anon Family Groups, a self-help organization composed of families and friends of alcoholics, through conver- sational sharing of alternative strategies for coping with common problems [26]. In LPA there appears to be a unique mode of cognitive restructuring brought about not by an exchange of shared experi- ences, but by a literal reality perception process involving simply the viewing of peers and confronting the similarity of their physical structure. Some per- sons will never attempt the challenge of this confron- tation; others cannot tolerate it and drop out of the group for this reason.

THE CONFRONTATION OF LPA

Caplan and Killilea [21] present the fullest over- view of the varied characteristics and dynamics postu- lated for self-help groups by researchers. They list more than 20. Of chief importance for an understand- ing of LPA are those dynamics which relate to (1) some form of declaration of one’s deviance and status to oneself, the group, and sometimes to the public [22], (2) the exchange of practical strategies and coping mechanisms by peers who share painful and specialized knowledge of their own or their childrens’ or relatives’ unique condition [23,24], and (3) the crucial provision of a meaningful arena for specialized social experimentation and relating. The latter func- tion has not been carefully studied for its ramifica- tions. While these three dynamics are all operative to some degree in LPA, I will focus in this paper on one major process, an aspect of (1) above, which serves to stimulate personal awareness and enhance the social functioning of LPA members. This process addresses the resistance most little people have had toward self- acceptance of being a dwarf and thus irremedially and markedly different from the cosmetic prescriptions of American society.

Many achondroplastic informants tell of how they physically and psychologically actually avoided look- ing at themselves or other little people before coming to LPA-a form of classic personal disavowal of physical deviance [27]. When they did see another little person, they disassociated themselves from any similarity to that appearance. Wright has vividly de- scribed this as “as if” behavior in a discussion of the physically disabled:

In the effort to adjust, the person commonly tries to con- ceal his disability-and for understandable reasons. The person typically views his disability as does the normal majority. If it is taken for granted that a disability is some- thing to be ashamed of, the obvious way to eliminate shame is to eliminate the fact of disability. Where this can be realistically accomplished through surgical and other therapeutic procedures. the person will feel relieved, and objectively he may effect a change from the handicapped to the nonhandicapped position. Where this cannot be ac- complished. however, the person will attempt to hide, for- get, or even deny what to him is a deficiency. The per- son may even succeed in denying painful facts to himself. The psychoanalytic literature on repression leaves no doubt that the escape forces may be so strong as to alter one’s memory and perception of the unacceptable [ZS].

For example, said one informant:

THE RECONSTRUCTION OF STIGMATIZED

IDENTITY

“For years I couldn’t look in mirrors. I had one in my room but I didn’t look in it. And you know how when you’re downtown you look in windows as you go by and see your reflection’? 1 never did. I just kept saying, ‘Well. I’m little,’ but I never could quite say ‘I’m a dwarf’.”

Persons who fit in the categories of membership for many mutual aid groups frequently share stigmatized identities. Sagarin [25] focused on the characteristic of deviance as the chief ingredient of need for such groups, among which he numbered LPA. And, in fact, many self-help groups may function as much to allay the shame and sometimes guilt of members resulting from their stigmatized status, as to assist them in changing or resolving their particular presenting problems. Thus the group’s belief system and activi- ties may serve to both legitimize the member’s par-

Or another :

“You’ve never really accepted yourself until you have looked in the mirror and said ‘I’m a dwarf’. A lot of people never come to this”.

Or another:

“If I saw another little person, I’d go around the block.” [Why was that?]

“Because I saw myself. I just didn’t want to look at that. I couldn’t stand to look at myself. Because 1 wasn’t a dwarf (sarcastically), I just had rickets.”

28 JOAN ABLON

And another:

“It is so hard to go and see yourself. You can’t ever see yourself or understand yourself until you see other little people. The first time I saw a little person was in the 10th grade or so. I saw this old woman on the street and thought, I don’t look like that. That’s not me. But then I said, ‘you do look like that’. Until you see other little people, you can’t understand yourself. That’s why people are afraid to do that, because they see themselves in others.”

Or another:

“I was a dues paying member of LPA for two years, although I did not go to any meetings. I wasn’t ready for that. In fact, I was beginning to get it together by that time and I knew that some day I’d have to face it-if I saw any other little people, I’d have to respond to them.”

Thus when one finally decides or is coerced by other little people to attend a meeting the first shock of seeing a roomful of other dwarfs can be a devastat- ing event.

Said one member:

“It was really very strange. I couldn’t conceive of all those people. I’d look at them and say, ‘I don’t look like that! They’re not like me!’ You know how when you watch a little person get up on a sofa, the way they have to push themselves back-1 watched the way people sat down; they were pushing themselves back and I was thinking. ‘I’m not like this. I don’t have to do that-the way they walk and the things they do:’ I didn’t realize that that’s exactly what I did. It really was sort of strange.”

Stated another:

“Then I went to that meeting and there were all these little people. I looked at them and thought, ‘I’m not little like that. I’m just not a little person like that.’ I really had to come to terms with it, that I was a little person like that. After the first meeting the other meetings weren’t so frightening.”

It would appear that for members for whom LPA is a truly successful experience for self validation, this shock precipitates the process of accomplishing a cog- nitive restructuring of the self image-the acceptance of self-identity and physical identification of being a dwarf-deviance avowal-and from this may follow a successful benefiting from the varied dimensions of social interaction and the sharing of logistical and medical strategies in LPA. But perhaps, even more significant are the implications for freeing the person in his/her total interaction in the average sized world-to experience life on all levels more casually and happily. This process constitutes in essence a per- sonal dress rehearsal for the rituals of normalization that have been described painstakingly by Davis [29] and Goffman [30] which are carried out by average sized persons in relating to dwarfs or others defined as physically or socially deviant. This dress rehearsal provides the beginning of self acceptance for the dwarf who by not accepting himself, may not be able to allow the process to occur by others in relation to him.

Most members explicitly tend to state this process as the chief benefit they have gotten from LPA.

“I had to look at myself. That’s what I got from LPA. I had to look at myself and look at other people, and realize

that I’m a dwarf. That’s all there is to it. I realized I’m a dwarf, and this is the way I am. This is the way it’s going to be and I’m just going to have to make the best of it. I can’t change it. That’s what the group has done for me. It really has helped me.”

Or another:

“I saw myself-1 learned about myself physically, and I learned about myself because I could see other little people like me.”

And another:

“I can’t believe that any little person can have a healthy image of themself or be a healthy personality unless they join LPA. You don’t see yourself as a little person. You have to relate to yourself as a little person by relating to other little people.”

While some members would not share this latter exclusive position, most would state that their partici- pation in LPA has in a special way significantly con- tributed to their social development.

The phenomenon described here is a ‘peculiar yet specific example of the construction or, here, recon- struction of identity and attitudes toward the self through interaction with others. The process was de- scribed by Cooley [3l] in one of the earliest writings of the symbolic interactionists.

“A social self of this sort might be called the reflected or looking-glass self;

“Each to each a looking glass Reflects the other that doth pass.”

Said Cooley:

“As we see our face, figure and dress in the glass, and are interested in them because they are ours, and pleased or otherwise with them according as they do or do not answer to what we should like them to be; so in imagination we perceive in another’s mind some thought of our appear- ance, manners, aims, deeds, character, friends, and so on, and are variously affected by it” [31].

Now, while Cooley used a metaphor within a meta- phor-the likening of our imagination of the attitudes of others towards us as the reflection of a mirror- creating our definition of what we are-the literal re- ality perception process in LPA presents a metaphor so real that it may be not a metaphor at all-seeing oneself directly in the physical person of other dwarfs. This is graphically illustrated through the words of one informant.

“When you go to a meeting, I can’t tell you how shocking it is-it’s just like looking at a lot of mirrors and seeing these people like yourself. I think it’s made me look at myself more realistically. When you go in and you see all these people you know you’re looking at yourself. Every- time I look at 2, I see myself there. I see her walking and I see the way she is. I see how other people are looking at her. And I know how they’re looking at me.”

The rapidity of restructuring of identity that appears to follow is an unusual process in identity development or redevelopment. Psychologists have noted that resistance to positive change is strong in such instances of long-standing denial of personal features. For example Wright states:

The resistance against positive change in the self-concept is especially interesting since it runs counter to what would

Dwarfism and social identity 29

seem to be the wishes of the person. Would not everyone rather feel better about himself? The resistance, however, is simply one of the consequences of the integrating process. Once self-abnegation involving the total person has taken place, then the old and new events tend to be interpreted in harmony with a negative self-concept.. The therapeutic problem involves identifying the worthy aspects of the upsetting characteristic in question, of giving them suf- ficient weight to effect a change in self-concept and of re- integrating the negative features accordingly [32].

The varied symbolic nuances of the declaration of new members of self-help groups acknowledging that they share the condition of the group have been sub- jects of exploration by researchers [33,34]. Yet, while the act of identification of the individual as a dwarf may appear akin to the in-group declaration of the alcoholic in Alcoholics Anonymous or the gambler in Gamblers Anonymous, that is-“My name is John. I am an alcoholic,” it differs in two important respects: (1) After the alcoholic accepts his identity as an alco- holic, his task is to then change his behavior in regard to his alcoholism, thus acknowledged. In contrast, for the little person, his task is to then get on with living the same life, but more happily and effectively. (2) Secondly, this semi-public declaration does not necessarily bond him affectively into a community as is true of AA and other groups. DuPont [35] for example has emphasized the social consequences of the alcoholic declaration which commits the member to a new community of support:

trast to the chief dynamics operative in many other groups, the major cognitive restructuring in LPA does not come through watching successful models cope or offer strategies or advice or through internalization of a new positive ideology about their condition. It occurs through a straight forward, but intense emo- tionally-laden process of recognizing and accepting one’s own appearance through a forced objective per- ception of others who share a similar physical con- dition. I suggest that this process is the primary and crucial one for new members. The effectiveness of other processes operative in the group is dependent on this initial acceptance of self.

This paper has described a peculiar process occur- ring within a non-professional mutual aid group for dwarfism-a condition for which the medical pro- fession is very limited in its potential for “cure” or treatment. It is appropriate that professionals encour- age and take heed of the nature of non-professional and peer-support systems which can aid in “healing” a variety of non-medical aspects of a disability by destigmatizing the person, and enhancing his self- image. This study suggests that a diversity of models for self-help may be postulated through the examin- ation of specific differing peer-support groups. The elements of these models may vary in accordance with the presenting problems and adhering difficulties which members bring and which have shaped their personalities and their lives.

“The statement, ‘I am an alcoholic,’ or ‘I am a junkie’ or ‘I Acknowledgements-The research on which this paper is am obese’ conveys not merely repentance and a desire for based was supported by the National Science Foundation, change but a rite of passage to a new community which BNA 76-18402. My gratitude is expressed for the generous

magically and tacitly infuses identity and pride” [36]. cooperation of the members of Little People of America.

For the dwarf, the acceptance of this identity does not necessarily bind him so emotionally to the group. Indeed there is little of the intense and even quasi- religious personal dedication of members to LPA as an organization that one finds in members of AA or other groups to which DuPont refers, and much less of the specialized form of automatically curing for other members simply by virtue of their membership that the researcher or even casual observer can feel in some other self-help groups. This relative absence of intense interpersonal involvement with others may be explained at least in part by the fact that the signifi- cant identification resulting from the acceptance of one’s own appearance, is an identification with a cate- gory---that of dwarf-not with any one person or group of persons. Once the therapeutic work-the major process-has occurred or is occurring, there is much less need to relate to others for one’s salvation. The member’s new found insights deal with his per- sonal self, not with a shared behavior, thus the more important social context for experiencing these changes is his everyday world. Members touch at events-seemingly briefly, yet intensely and symboli- cally-and then return to their own worlds to operationalize new-found insights.

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SUMMARY 12.

A process of redefinition of identity which occurs through a literal reality perception heretofore not examined in the literature has been described. In con-

Weiss J. 0. Social development of dwarfs, In Proceed- inqs of a Corferer~ce 011 Genetic Disorders: Social Ser- uice Inferventions (Edited by Hall W. T. and Young C. L.), p. 56. University of Pittsburgh, Graduate School of Public Health, 1977. Achondroplasia is a primary bone disorder which occurs in about one out of forty thousand births. It is found in both males and females and in all races, Adult male achondroplastic dwarfs average 51.8 inches in height. while females average 48.6 inches. Achondro-

JOAN ABLON 30

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