Book Review: Reconstruction Motherhood and Disability

Anthropological Quarterly

Gail Heidi Landsman, Reconstructing Motherhood and Disability in an Age of "Perfect" Babies. Routledge: New York, 2009, 272 pp.

Anthropologists have recently begun to show more interest in applying ethnographic research methods to the analysis of the social and cultural contexts of disability. However, there is still much to be done in order to demonstrate anthropology's relevance to the study of physical and intellectual disability, the relationship between disability and reproductive technologies, and concepts of normality and abnormality. Gail Heidi Landsman's new book on finding meaning in motherhood in the U.S. when a child has a disability is a very important step in this direction. Landsman explains in her introduction that her monograph is

...about transformation, about the meanings mothers of "imperfect" children give to motherhood and to disability in an age in which infants are commodified and technology seems to hold out the promise of "perfect" babies. It is not a book about disabled people but about the experience of, and possibilities residing in, mothers' ongoing reinterpretations of disability. (p. 3)

By fulfilling this task, however, Landsman inadvertently speaks to broader cultural questions-deeply-rooted American values, ideals, and expectations surrounding the perceived boundaries of personhood, and the meanings ascribed to those who do not meet the standards. Ideas about personhood are indeed central to Landsman's analysis of the experiences of the mothers in her study: she argues that the " full" personhood of the disabled child is diminished, in conjunction with that of the mother- specifically, her social identity as a mother-her motherhood.

Landsman conducted ethnographic research in Albany, NY in a Newborn Follow-up Program program at a major medical center that provided outpatient healthcare to babies and toddlers who were disabled or "at risk" for being diagnosed with a disability. Her data come from interviews with sixty of mothers whose children received care at the program as well as her observations of developmental evaluations. Conducting research during the earliest stages of diagnosis and treatment is a unique element to this study, and seemed to reveal a set of deeply held prejudices about abnormal children, as well as the process through which mothers begin to dismantle and reconstitute some of these ideals (about normalcy and ability to attain perfection) they themselves had once held. The vast majority of the women in her study were white, but varied in terms of other demographic criteria. The specific types of disability also ranged widely, from a concise physical condition such as a missing limb, to more ambiguous problems such as an observed developmental delay, perhaps following a premature birth or complication during birth. The range of physical, genetic, and neurological conditions adds an intriguing element to the study as well: while many of the biomedical and practical details may have differed, the mothers reiterated similar feelings and practices in regards to the social aspects of having an imperfect or abnormal child.

Early in the book, Landsman explores the burdensome web of social and emotional conflicts that mothers find themselves tangled within upon hearing their child has, or is at risk for, a lifelong disability. The contemporary American biomedical milieu prescribes certain behaviors for pregnant women that are intended to ensure the health of the baby. While few medical doctors would say that all mothers who avoid alcohol and cigarettes, for example, are certain to have a "normal" child, the reality is that popular discourses on fetal health do promote a perception that mothers have the ability to control the health and "quality" of their unborn children. So when the majority of the mothers in Landsman's study had done "everything right" during pregnancy, and still found that the baby they had produced did not meet social standards of normality, such ideas about maternal responsibility led to serious internal conflicts. Mothers described feeling harshly judged by others, blamed for causing the disability by engaging in poor maternal behavior. The consistency of this sense of social stigma regarding the mothers' lack of prenatal responsibility demonstrates that these mothers' perceptions represent more than an oversensitivity or misunderstanding of public attitudes. As time went on (as Landsman describes in later chapters), mothers became more assertive in their attempts to confound and reconstruct negative attitudes about the child and themselves. In addition to feeling blamed, mothers attempted to find blame in themselves, and if at all possible, to pinpoint the specific mistake they had made (drinking alcohol before knowing of the pregnancy, for example). That the prevalent attitudes place the burden of fault squarely upon mothers' shoulders demonstrates two persistent notions: that abnormal/imperfect babies are undesirable and should be actively avoided, and that mothers can have actual control over the biological constitution of a baby. These ideas, as Landsman shows, are crucial points of departure from which mothers begin a process of narratively reconstructing the personhood of their child.

From this point, Landsman transitions to the next question at hand: if the babies these mothers "produced" are substandard, how do mothers perceive their role and social identity in light of this imperfect reality? In answering this question, Landsman presents an important perspective on what many mothers and doctors perceive to be a classic American cultural role of motherhood. She sensitively shows how and why these mothers are led to feel as if they are less than full or real mothers, and what they do in response to what might be conceived of as an enduring social and emotional trauma. Having a child whose full personhood is questioned leads mothers to question the way their motherhood defines them as persons, and diminishes their status and value as mothers. This important argument illustrates the extent to which American mothers' identities are linked to that of their children as well as a romanticized image of motherhood that is part of a perfectly organized life full of "happily-ever-afters." This discussion again touches on a cultural perception of a sense of control regarding one's life, and it also elucidates the prevailing social forces that result in the loss or decrease of a social identity such as motherhood. It is indeed counterintuitive that, apart from adoption, pathological caretaking, and kinship and marriage systems in which social and biological parentage may be divided, one can biologically be a mother but socially have her motherhood in question.

Later in the book, Landsman argues that as mothers navigate everyday life they find novel ways to confront and confound the prejudicial social forces that question their identity as mothers and their childrens' personhood. She employs the concept of "narrative emplotment" to analyze important ways in which these mothers interact with society. Through narrative emplotment, mothers place their perception of the child in terms of a past, present, and future storyline that characterizes the child as a meaningful person who is worthy of both their mothers' nurturance and society's acceptance. Mothers not only describe what they have observed already (especially including hopeful developments), they also describe a desired future they hope to take part in forming.

Mothers in the study used narrative emplotment strategies to engage with biomedical labeling. Diagnoses such as mental retardation or autism are stigmatizing because it is popularly believed that such children will never be a fully functioning members of society. The use of the term "delay," on the other hand, implies that a child may not be permanently disabled, and with the right interventions and nurturance will reach the potential of normal children in development. In this study, mothers narrative practices followed a pattern of preference towards terms such as "developmental delay," which allowed them to maintain plotlines with positive outcomes where the current condition was lessened or, ideally, cured. Landsman's work importantly demonstrates that while biomedical labels may come from an arena in which experts are more or less blind to the social significance of labels, seeking primarily to describe biological phenomena and treatments for those phenomena, when biomedical labels are applied to human beings, they become drenched in social meanings that have profound implications for the person labeled and his or her close relations. In addition, areas in which biomedicine cannot provide solid answers about causality and prognosis are conceptual springboards for mothers' narratives of hopefulness. Cutting-edge research on the ability of the brain to heal after trauma is an example of this phenomenon, as Landsman observed mothers of babies who had suffered brain damage during birth drawing hope from possibilities presented by new developments in neuroscience. Since the brain is still an aspect of human biology which scientists have much to learn, this arena of scientific unknown lead mothers to project preferred futures for their children within the scientific void. Overall, viewing the child's condition as able-to-be-improved upon-as opposed to staunchly permanent-was extremely important in mothers' narratives, and it meant to mothers that they were playing an important role in nurturing the child towards becoming a more full person.

In the final chapters of her book, Landsman addresses issues related to the cultural ideals of the purpose of reproduction, and more generally, about personhood and prejudice. On the one hand, she analyses how these mothers came to view their imperfect children through a metaphor of the gift. While they did not view the child this way initially, as they embarked on a process of getting to know the child as an individual and learning more about the specific special needs, they came to describe the child as a gift-giver, one who taught them important life lessons such as patience and made them a better person. On the other hand, while mothers grew to accept the uniqueness of the child, they also became increasingly concerned that as the child grew and embarked on day-to-day life, people would judge her solely based upon her disabled appearance. Interestingly, Landsman's research suggests that while mothers often wanted to change and improve the child's condition, this was not an act against the child as a unique individual, but rather an effort to prevent prejudicial treatment by others. Landsman situates these narratives within the questions raised by disability rights scholars and activists: Should one want to change a person with a disability, or should we strive towards changing society? Are these mothers morally and ethically justified in their desires to decrease, to make less obvious, or even to cure the child's disability?

Reconstructing Motherhood is a major step for anthropological studies of the social meaning of disability and personhood, and also of parenting and the meaning ascribed to offspring in contemporary American society. It is one that certainly could be modeled in other contexts, and will bring a rich set of comparative data for those studying the social experiences of disability in other cultures. Additionally, since Landsman's study involved predominantly white women, clearly there is still a need for similar research on other racial and ethnic demographic groups in the U.S. This highly readable book would be appropriate for advanced undergraduate courses, as well as graduate courses, on topics related to socio-cultural anthropology, medical anthropology, and American cultural studies. But, in addition, I sincerely hope that it finds a readership beyond scholarly circles, especially because it provides such a fascinating and unique angle from which to view contemporary American culture and its ongoing social inequalities.

----

More book reviews

More book news