This post originally appeared on the IJFAB Blog and has been posted here with permission.
One of the most urgent and important issues in the treatment of neonates with atypical genitalia (at times referred to as intersex or disorder of sexual development DSD) is the question of genital normalization surgery. For years, medical professionals thought that having “normal” looking genitals was foundational to healthy psychological development, and they advocated for these surgeries to happen shortly after birth.
Activists and researches have questioned this practice, arguing that these early interventions are often guided by sexism, paternalism, lead to lasting psychological and physical scars, and reflect social discomfort with bodies that question heteronormative standards rather than a genuine medical urgency. Accord Alliance recommends that parents wait to consent to any irreversible surgeries (with the exception of surgeries necessitated by immediate physical danger) until the child can participate in the decision making process. They note:
Waiting can give him or her time to make those decisions; waiting can mean you and your child may get more information about how well the procedures being offered to you work; waiting can mean you give your child the message you accept your child as he or she came, and that you respect your child’s ability to make decisions about his or her own body.
The shift away from early genital normalization surgery has been questioned by Dr. Heino Meyer-Bahlburg in a chapter in a new volume titled Genetic Steroid Disorders (M. I. New, O. Lekarev, A. Parsa, B. O’Malley, & G. D. Hammer (Eds.) London: Elsevier.)
Arlene B. Baratz and Ellen Feder have responded to his piece in a letter to the editor, arguing that Meyer-Bahlburg is actively misrepresenting data to support his position in favor of early genital normalization surgery. Additionally, this letter explains why not only patient advocates, but people with atypical genitalia themselves need to be included in the design and implementation of research projects.