ACPOC - The Association of Children's Prosthetic-Orthotic Clinics Founded in 1978

Member Locator

View Options - Click to expand
Print Options - Click to expand
E-Mail Options - Click to expand

Book Review ABNORMALITY AND NORMALITY: THE MOTHERING OF THALIDOMIDE CHILDREN

This project was intended as a study in depth of the mothering of 20 thali- Idomide children. Its focus is on the feelings of the mothers but it also deals with the reactions of society, family and professional personnel. The study, based on the author?s doctoral dissertation, discusses a significant ac- complishment in habilitation, illuminates some gray corners, and concentrates a glaring beam on the behavior of some professional people and disciplines. Among the author?s conclusions is the conviction that a reassessment and restructuring of both the rehabilitation process and the roles of various per- sonnel are sorely needed. Dr. Roskies, the Rehabilitation Institute of Montreal (RIM), and its affiliates are to be commended on the candor of this study which, under other auspices, might have been stifled.

The book contains six chapters. They deal with the background to the thalidomide phenomenon; the worldwide and Canadian experience; the aims and methodology of the research study, and the social normalization of abnor- mality in the context of the pre-birth anticipation, the birth crisis and later developments. Dr. Roskies pays particular attention to an elaboration of "ab- normality within normality" as reflected in the family environment and the impact of the habilitation program. The chapter on prosthetic habilitation and the differences between upper- and lower-limb involvement is of particular interest. A summation of the study?s goals and findings concludes the discus- sion. The remainder of the book consists of a reproduction of the interview schedules, letters to parents, glossary of medical terms, bibliography and var- ious indices.

The sample consisted of the mothers of 20 children (17 girls and 3 boys) selected from a larger sample. Although the families were predominantly Cath- olic, other denominations were also represented, and socioeconomic and ed- ucational levels varied considerably. Nineteen mothers had agreed to partici- pate in the habilitation program sponsored and funded by the Canadian gov- ernment through the Rehabilitation Institute of Montreal. Nearly all the children could be classified as cases of phocomelia of varied severity but various other internal and external anomalies and sensory defects were also present. Thirteen of the children were fitted with prostheses. Nine had upper- limb deficiencies, two had lower-limb deficiencies, and two had multiple-limb involvement. While it was originally felt that the children were of average or above-average intelligence, the sample later appeared to contain more mentally defective children than might be expected by chance. (See Ddcarie, Thdr~se Gouin. The Thalidomide Project: Five Years of Research. Inter-Clin. Infor- mation Bull., 9:12, September 1970). Limitation in speech development was an added problem although it is not yet clear to what extent constitutional and/or psychological factors are implicated.

The method of study was an intensive series of interviews of the mothers. The interviews, covering the here and now, and usually including the preceding six months to one year, were conducted when the children ranged from about 3 to 4?/2 years. Thus, the material elicited from the mothers was retrospective in that the pre-birth and birth crises were over, and the mothers were discussing past feelings, present experiences, and anticipation of the future. Dr. Roskies was also in touch with the mothers when the children returned periodically for hospitalization, surgery, and therapy. Dr. Roskies had no clinical obligations aside from this research. She was therefore able to observe the conditions and procedures at RIM without becoming involved or biased, and the confidentiality of her relationship with the mothers and children could be preserved.

There are interesting and worthwhile sections in this exploratory study with its small sample. Reservations may be entertained, however, as to the real depth of the study and whether generalizations can be made from this sample to the thalidomide population as a whole. Nevertheless, some interesting findings can be noted and questions raised pertaining to methodology and implications for future studies.

The thalidomide pills had been ingested by the mothers for the relief of various symptoms such as nausea and insomnia, or as a sedative. Eight mothers were unaware of their pregnancy when taking the medication. Twelve mothers obtained the pills from the physicians professionally responsible for their care, two purchased them in a pharmacy, three obtained them from physician relatives, and three used pills prescribed for others. When the thalidomide effects were discussed in the press the mothers, or their husbands chose not to face the possibility that they had taken similar medication, despite strong intimations and clues. They chose to suppress or deny the evidence and hoped for the best. The behavior of some professionals emerges as decidedly unheroic, with evasions, denials, disappearance from the scene, or abrupt termination of physician-patient relationship. After the birth of the child, reactions of the professional personnel were, generally, similarly uninspiring although some striking exceptions of deep empathy and humanity are recorded. Inconsistency and confusion on the part of personnel and clergy are strongly indicative that professional expertise is not necessarily associated with a consistent, ethical philosophy or a humane approach. It should not, perhaps, surprise us that during the birth crisis, and later, mothers hoped for a miraculous cure or expected, and hoped for, the death of these "monsters," until a relationship was established in response to the "personality" reactions by the children.

With the introduction of the habilitation program, 19 of the 20 mothers chose to participate and later acknowledged considerable gain from the program despite initial confusion, complaints and difficulties entailed in the numerous hospitalizations and separation of the children for protracted periods. The treatment program was regarded as of considerable benefit although bureaucratic red tape often imposed difficulties on the mothers. Since the philosophy of RIM stressed habilitation and integration of the child into normal society, no segregation of the children was encouraged. Moreover, the number of the children in Quebec (and in all Canada for that matter) was not limited in comparison to the thalidomide population in Germany and England. Scant attention was paid to the real psychological needs of the mother who had to face the hostility of unsympathetic relatives and neighbors. The mother was regarded as a "problem" unless she accepted the habilitation goals. Little was done to acknowledge the fact that even a neurotic reaction may have a realistic component that requires an empathic professional response. The chapter on prosthetic restoration for 13 of the children is of special interest because of an evident dichotomy in attitudes. Mothers of children with lower-limb involvement were more accepting of prosthetic restoration because no alternative seemed feasible, while mothers of children with upper-limb involvement only felt that the early-fitted prostheses were of limited or no value. Moreover, the mothers regarded the prostheses as presenting an uncosmetic, mechanical appearance and as interfering with displays of affection toward the child. These mothers accepted the prostheses only because they were convinced that they should conform to the habilitation goals but hoped for better prostheses in the future.

The mothers claimed their husbands were too shattered to be of help in providing reassurance or support, or as a source of cathartic communication, although a husband or two were seen by the researcher as attempting to assert the male role. The mother?s avowal is reminiscent of the plaint of yesteryear?s child psychologist, "We see the mother, but where is the father?" This phenomenon, in the context of the recent loosening of family ties and of Women?s Lib, makes us wonder whether Father is abandoning his role, his full-blooded color draining from him as he turns first into a pastel dilution of patriarchal authority, and then into a blanched, frightened near nonentity, before fading into anaemic anonymity.

Dr. Roskies also analyzes in detail the various reactions of mothers, personnel, relatives and community to the birth crises, and the various adjustments phases. These are clearly, if repetitiously, presented. And yet a reviewer has caveats with this book because it is more an anthropological than a deep psychological study, as Dr. Roskies herself suggests at one point (pp. 33-34). While the book is readable and free of the jargon that defaces many serious works, it betrays its ancestry-the author?s Ph.D. thesis-insofar as it ruminates and re-digests every aspect repeatedly. At some points Dr. Roskies seems almost exasperated when she seems to be faced with 20 unique cases, but undaunted she persists, reshuffles and analyzes and emerges with various classifications. But what can be done with 20 unique cases, of varied socioeconomic and educational background and religious beliefs or practice? "The most striking characteristic of this sample remains its heterogeneity" (p. 32). Can these results be generalized to other thalidomide populations? Dr. Roskies states "no family in the sample broke up as a result of the presence of the deformed child, and no mother viewed the actual mechanics of child-rearing as creating an unbearable strain." Whether these conclusions can be generalized is doubtful in view of Dr. Ddcarie?s finding in her study (cited above) of substantially the same sample (N = 22 instead of 20) that "The parents of one girl had recently separated, the mother of the second had become a chronic alcoholic."

Is this a definitive study? Dr. Roskies says it is an exploratory study in depth, which eschews the methods of clinical psychology and chooses social psychology concepts in their stead.

The prime question is whether the "depth" interviews employed probe into real feelings or psychological defenses, especially when the elicited material is retrospective. Since the author stresses a "developmental" versus a clinical approach, how can interviews 3 to 4 years after the birth trauma reveal past feelings? As the author repeatedly stresses, the mothers? feelings have evolved with the passage of time in response to the maturation of the child and environmental interactions. Although clinical concepts are disavowed, the discus- sion does rely on clinical interpretations such as mourning, denial, rationalization, etc., as much as on such social psychological terms as the "marginality" status of abnormality within normality. Moreover, the author admits to spending much time examining and reexamining, shuffling and reshuffling the raw protocols in order to find the proper conceptualizations to explain the findings. While the value of such an approach cannot be gainsaid in a pilot study, the method is hardly a scientific one. When a project is approached with no pre- conceived hypotheses one can perhaps be open-minded, not always knowing what to seek. Nevertheless, while the study does provide us with interesting observations as to behavior, reactions and feelings, one must question the virtue of ignoring the need for a really new conceptual framework, with emphasis on prediction of responses, in order to tease out new facts. And was not Dr. Roskies forced into utilizing some clinical concepts dealing with defenses, death wishes, suppression and rationalization, etc., while successfully avoid- ing jargon?

In brief, there are many worthwhile observations in this book which provide us with a cineramic panorama of emotional color and feeling, as well as a stereophonic reproduction of agony and desperation. However, only more refined concepts can provide us with a stereoscopic understanding of such tragic experiences.

Samuel A. Weiss, Ph.D.

New York

Journal of the Association of Children?s Prosthetic-Orthotic Clinics

Vol. 28, No. 2, Spring 1994