Finding just the right word is no mean feat. Even the greatest writers admit to struggling for days to come up with the magical noun, verb, adverb, or adjective that breathes life into a sentence. Paradoxically, words are defined by more than their definitions. They have social and psychological dimensions that change over time and are not readily captured by a dictionary.
And words have power. Sticks and stones may break your bones, but the skeleton mends in a matter of weeks. Racial slurs, nicknames, putdowns, and crude anatomical slang cause generations of damage. This is true even when the word in question is not the result of intentional bigotry or hatred. The road to “other” people’s hells can be paved with supposedly neutral words that produce unintended consequences. Just ask the mother of any child who carries the label “fetal alcohol syndrome” or “crack baby.”
People with disabilities bear testimony to the shameful history of the truly awful terminology used to label them. The terminology arose in part due to a power differential; people with disabilities often did not have the social and political opportunities to define themselves to the rest of the world. Moreover, words that are considered acceptable in one era may be demeaning to the next generation. “Moron,” “imbecile,” and “idiot” seemed perfectly scientific when the terms were first defined in relation to IQ. But IQ testing itself served to reinforce stereotypes held by researchers and clinicians.
People First Language is far less dehumanizing. The National Center on Disability and Journalism offers a style guide for discussing or writing about people with disabilities (ncdj.org/style-guide). But even this humanizing lexicon may eventually sound insensitive.
The professional term I struggle with most is “birth defect.” Like everyone, I am a product of my times, and it rolls naturally off my tongue. It was the term I was taught, and it is still reinforced daily in medical journals, professional conversations, medical records, and the popular press. Think of the flurry of medical articles and terror-evoking news stories published over the last few years about “Zika-related birth defects.” The redoubtable March of Dimes (MOD) dropped “birth defects” from its official name more than a decade ago. But the new name may have been more the result of a change in mission than in sensitivity; my quick search of the current MOD website produced 63 references to birth defects.
The road to “other” people’s hells can be paved with supposedly neutral words that produce unintended consequences.
Superficially, “birth defect” sounds much better than past terms such as “monster,” “hopeful monster,” “sport,” “freak of nature,” “mutant,” “defective child,” or clinical terms like “malformation” or “deformation.” A study conducted by the National Center on Birth Defects and Developmental Disabilities, a branch of the Centers for Disease Control and Prevention, found that about 35 percent of the general public preferred the term “birth defect,” though families affected by congenital disabilities were slightly less likely (28.5 percent) to prefer the term. Somewhat less favored (about 22 percent) was the phrase “children with special needs.” Other terms that were preferred by much smaller percentages included “birth conditions,” “birth anomalies,” “congenital anomalies,” “congenital disorders,” “congenital malformations,” and, at the very bottom of the list, “adverse pregnancy outcomes.”
“Birth defect” is an insensitive term. “Defect” is not a compassionate, humanizing, or nonjudgmental word. What parent wants to be told their baby has a defect? It is a baby, not a poorly manufactured automobile.
Alternative terms such as “birth impairment,” “physical impairment,” and “congenital disability” have their shortcomings, too. “Birth impairment” is not clear; it can suggest that the birth itself was impaired or that the impairment was the result of the birth, rather than the baby having an innate impairment. “Physical impairment” does not work from a clinical perspective, since it fails to distinguish between impairments acquired from life events, and congenital or genetic impairments. “Congenital disability” tells us something, but it does not capture the wide range of severity of the conditions that can affect a newborn. For me, there is a qualitative difference between mild syndactyly (or webbing) of the second and third toes and profound developmental anomalies such as the various forms of alobar holoprosencephaly (a rare and deadly malformation, in which a fetus’s developing brain does not divide into two separate hemispheres). The latter is more than a disability: It is the result of embryological processes gone seriously awry.
So, let me offer a suggestion for an alternative term to “birth defect”: “congenital physical impairment.” Professionals love brevity, so its acronym can be the easy-to-say CPI (in the context of medical articles, CPI is unlikely to be confused with the Consumer Price Index). “Acronymization” itself can be objectifying, by reducing a significant problem to a string of letters. I am as guilty of it as any genetic counselor, but I can live with that charge; worse offenses have been committed in the name of good medical care.
For further clarification, CPIs should be graded — mild, moderate, or severe. Grading, of course, is in the eye of the beholder and carries implicit biases, but all words do. Such is the nature of language. Grading gives some measure of clinical differentiation, which can be just as important to parents as to care providers. No word is value-free, but CPI is much closer to the neutral end of the spectrum than to the bigoted end. And, of course, the proper phrasing is “a baby with a CPI” rather than “a CPI baby.”
On the other hand, I readily admit that CPI probably reveals something about my own implicit biases and blind spots. I strive to be self-aware, but it is a struggle. Words can be our strongest allies or our worst enemies. To paraphrase the Serenity Prayer, may we gain the wisdom to know the difference.