Body Image and Congenital
Conditions with Visible Differences
This chapter describes congenital anomalies resulting in visible disfigurement and summarizes the effects on body image, self-concept, and social interaction. Macgregor described visible disfigurement as a social disability, implying that problems experienced by disfigured people set them apart from the general population. However, more recent research suggests that the continuum of emotions, thoughts, and behaviors characteristic of people with disfigurements is not pathological but instead is part of the same continuum experienced by those dissatisfied with aspects of their ostensibly "normal" looks. Factors exacerbating or ameliorating body image effects are also reviewed, as are methodological challenges faced by researchers in this field. Because little research exists that specifically explores body image and congenital conditions, personal accounts and the broader literature on body image in nondisfigured populations are also included.
Some types of disfiguring congenital conditions are fully manifested at birth (e.g., cleft lip), whereas others worsen over time (e.g., neurofibromatosis). Head and neck malformations are the most common visible anomaly. A cleft lip and/or palate occurs approximately once in every 800 births, and can manifest on one (unilateral) or both (bilateral) sides of the face. Other less common abnormalities result from the failure of parts of the face to develop fully, as in the absence of an ear, the underdevelopment of cheek- and jaw-