Disordered terminology

Over the past few years, the medical establishment has been moving away from the terms “intersex conditions” or “intersex people” toward “disorders of sex development” (DSD). The aim of this shift, according to the 2006 “consensus statement” in the journal Pediatrics, is to avoid using confusing or pejorative language to describe medical conditions. Another concern is that the term “intersex” might push an identity on people with different sex characteristics that they do not want.

Intersex advocacy organizations do not agree on how to respond to this change. The Intersex Society of North America (ISNA) shut down in 2007 due in part to the development of DSD. In 2008, former associates of ISNA founded a new organization, the Accord Alliance, which now uses the term “disorders of sex development” instead of “intersex.” Other organizations, such as the Organisation Internationale des Intersexes (OII), which has chapters in several countries (including Canada) oppose this terminology.

I am skeptical of this terminology shift. I’m particularly doubtful that we can ever use the term “disorder” in a way that does not result in stigmatizing the individual to which it is applied.

I should note that I do not identify as intersex or as a person with a DSD. But I’ve seen enough problems with the use of the term “disorder” as applied to trans people to raise some concerns about how this terminology will affect care and social perceptions. I also have a particular concern with this case because some individuals have advocated that transsexuality be considered an intersex condition – effectively, transsexuality would mean having a cross-sexed brain.

The term “disorder” stigmatizes people in such a way that discourages them from seeking care. I know that the possibility of receiving a “gender identity disorder” diagnosis made me conflicted about seeking help from health-care providers. I knew ways of improving my life were available – but only if I accepted that label.

What’s more, if a characteristic gives someone a “disorder,” not having that characteristic becomes “normal” and “desirable.” As long as we refer to intersex conditions as disorders, we are preventing the emergence of the notion that no form of sex variation is better than another.

The terminology also reflects a particular medical model. The medical establishment tends to assign labels and diagnoses to various groups based on their own traditions and thinking, without taking into consideration the thinking of the groups affected. While the medical community collaborated with some intersex advocacy organizations, such as ISNA, the “consensus statement” ultimately was passed down from the medical establishment itself. Given the imbalance of power between the two, I’m curious as to how much the current phrasing reflects intersex people’s opinions.

Under a DSD model, all intersex people, regardless of their bodily variations, have a disorder – which implies a need to fix, correct, or treat the “disorder,” the same way people attempt to solve, say, post-traumatic stress disorder. But not all intersex people want or need medical intervention. In fact, the urge to fix intersex people has led to surgeons modifying infants’ genitalia to what they think would be best for the child. A significant portion of these children have had to later seek “transgender” care in order to address the problems that surgeons made for them when they were too young to consent.

We need to make several changes to this model. Members of marginalized groups should be able to participate as equal partners in developing their own standards of care. Since communities don’t always agree on self-identification labels, health-care providers should respect how individuals refer to themselves. People with different bodies should have different care depending on their individual needs. We should avoid using stigmatizing language that would interfere with care. And individuals should be the only ones who can consent to their own care; health-care providers shouldn’t make decisions for anyone – instead, they should inform and assist. Without these changes, we won’t be providing the right care.

Quinn Albaugh writes in this space every week, but time is running out. To stay in touch, write her at quinn.albaugh@gmail.com.