The late John Money, writing about intersexuality, appropriately said, “Words can wound. Medicine can be very cruel in diagnostic terms.” He commented, “hermaphroditism or intersex are too stigmatizing for people born with a syndrome that affects the sex organs.” Money therefore labeled sex development variations as “sex errors of the body” in his texts for parents and clinicians. He viewed the term “error” as less stigmatizing, because he thought it focused on characteristics of the anatomy rather than of the person. Modern medicine continues to view a range of variations in sex development as biological errors and this perception has been used to both justify and require medical intervention.
Recently, a Consensus Statement on Management of Intersex Disorders was published in the Archives of Diseases of Childhood. Perhaps with the same good intentions as John Money, one of the recommendations of the Consensus Group called for a change in nomenclature, this time renaming such variations in human sex development to “Disorders of Sex Development” or DSD. Laudably, the Consensus Group rightly recognized that the terminology medicine employs sends important signals to parents, caregivers, and patients. Notably, with the advantage of some hindsight, the consensus statement is sagely more conservative and cautious in recommending surgical interventions, particularly for infants and young children, than standard care has been in recent decades. Nevertheless, the consensus statement remains wedded to the notion that variations in sex development constitute “disorders” or “something wrong” that should be medically or surgically managed. We hold that such is a decision only the effected person can decide.
Medicine is certainly not static. One need only recall the battle over and ultimate removal of homosexuality from the DSM to appreciate that concepts of disease and disorder are influenced by social construction and politics as well as informed by science and that social constructions, politics and science do not stand still. And so it is appropriate to reconsider what labels are assigned to conditions of the human body from time to time.
It is undeniable that medical labels have a power that transcends medical treatment. Those who influence how medicine classifies individuals must be sensitive to the potential transformative power of the labels they assign. Medical labeling affects social and legal order. But most importantly, labeling affects individuals. While medicine from time to time may reconsider terminology, the labels assigned to persons born today with sexual characteristics outside statistical norms can become static symbols of their inferiority that they might shoulder for a lifetime.
Variations of sex development inextricably involve sexual and gender identity, sexuality, and one’s innate sense of self. Thus, the term disorder is far too narrow and too pathological to be accurate. We oppose its adoption in this instance. We suggest that the institution of medicine take a more humble and compassionate approach, recognizing that the institution of medicine does not act from a sphere of perfect knowledge nor hold a monopoly on classifying individuals. What medicine observes are variations in human sex development, it does not know the biological purpose of such variations, and there remains great controversy about how, whether or when to intervene. Terms such as error or disorders reveal an unwelcome arrogance in light of medicine’s limited vantage. Medicine can do better. One way is to, instead, use the term Variation in Sex Development (VSD), a term that is without judgment and neither prohibits or ordains medical intervention.