Background:

In 2005, a group of 50 experts on intersex, including two intersex activists, convened in Chicago to discuss the current state of intersex medical care. From this meeting, a “Consensus Statement on the Management of Intersex Disorders” was produced and published in Pediatrics, the official journal of the American Academy of Pediatrics. One of the most controversial components of this consensus statement was the formal introduction of new nomenclature: disorders of sex development, or “DSD” for short. The authors of the consensus statement justified the need for this new terminology by suggesting “terms such as ‘intersex,’ ‘pseudo hermaphroditism,’ ‘hermaphroditism,’ ‘sex reversal,’ and gender-based diagnostic labels are particularly controversial” (Lee et al. 2006, 488).

“Disorder of sex development” terminology has become commonplace across the medical profession, especially in the United States.

However, many people with intersex traits reject this new terminology, citing the pathologization “disorder” implies. Yet, some people with intersex traits have accepted the term and find utility in it when attempting to understand their difference—especially when explaining it to others in their life. In recognizing the problems with “disorder” language, many of these folks have recently moved to modify DSD terminology by replacing “disorder” with “difference” allowing “DSD” to instead stand for “differences of sex development”.

interACT’s use of terminology and position on the issue has evolved over time,

moving towards nearly exclusive use of the term “intersex” and away from “disorder of sex development” entirely. This change is largely a result of an increasing general understanding and acceptance of the term “intersex”. However, interACT maintains its longstanding position of accepting individual choice around terminology and identity, and will not dictate others’ choices, nor ostracize those who choose to use “DSD” or various iterations when describing their own personal experience.

In 2015 interACT completed a strategic planning process that included significant attention to our use of DSD/intersex terminology. The Board of Directors has approved the following new statement on language:

Statement on Terminology:

• interACT is opposed to any terminology that pathologizes people born with intersex traits.

• interACT is committed to avoiding the direct use of “disorder of sex development” language on our website and in other materials.

• interACT will on occasion use “difference of sex development” language strategically on a case-by-case basis when communicating with certain audiences such as some parents and doctors if deemed strategically necessary.

• interACT believes that people born with intersex traits ought to have the autonomy to use whichever term, or terms, they prefer when speaking about their own bodies and experiences and interACT will not prohibit, monitor or criticize the terminological preferences of people with intersex traits.