Sorting out terms
Intersex conditions have long stirred argument and debate. In fact, the term “intersex” is itself controversial, as are other labels used to describe people born with atypical sex development.
In a report published by the Hastings Center, a bioethics research institute, professors Ellen K. Feder and Katrina Karkazis trace the history of terms used to describe persons with atypical sex anatomy. The report is excerpted here because it gives an excellent overview of the history of terminology as well as insights into debates surrounding the use of various terms.
Keep reading to learn about different viewpoints on terms such as "hermaphrodite," "intersex," and "disorders of sex development" (DSD).
Hermaphrodite is an older term you might know; it has fallen out of use and is considered offensive by many. Feder and Karkazis explain why:
“For centuries, people with atypical sex anatomy have been labeled hermaphrodite . . . Since the nineteenth century hermaphroditism was not only understood as a disorder but referred to a problematic type of person.” (Feder & Karkazis, 2008, p. 33)
In other words, the term “hermaphrodite” labels a person, not a condition. It’s also linked with the mindset that people born with atypical sex development are freaks. In fact, some circus sideshows and carnivals featured so-called “hermaphrodites” as part of their act.
The term “hermaphrodite” is also misleading because it implies that individuals have two sets of functioning sex organs, which is not the case.
Intersex is a term that today is used widely in the media and some other circles. Like “hermaphrodite,” intersex is an umbrella term that refers to more than twenty different conditions relating to atypical sex development.
Feder and Karkazis explain that “intersex” was first used by researchers and medical doctors in the early 20th century:
“It was first applied to sexual ambiguity in moths in the early twentieth century. Clinicians gradually adopted the term to refer to sexual ambiguity in humans, but its use over the intervening century has been inconsistent and variable. Despite a few isolated instances referring to intersex as a diagnosis . . . clinicians have not viewed it as a diagnostic term. Rather, much like hermaphrodite, intersex is an umbrella term that medicine adopted to refer to a range of conditions in which sex development is atypical.” (Feder & Karkazis, 2008, p. 33)
Feder and Karkazis continue,
“By the end of the twentieth century, intersex was widely used in the medical literature as a synonym for hermaphrodite . . . [But despite the change in terms], one thing remained consistent: intersex was understood to denote kinds of people who violated prevailing cultural understandings of male and female bodies.”
Prevailing wisdom was that it was physicians’ job to “fix” the bodies of affected individuals and assign them a gender. (Feder & Karkazis, 2008, p. 34)
A very different understanding of what it means to be intersex emerged in the 1990s, when activists used the term to define a broad community of people born with atypical sex traits. Intersex advocates criticized the medical treatment of children born intersex, arguing that in most cases, their bodies did not need to be “fixed;” similarly, advocates cast doubt on physicians’ efforts to assign a gender to babies born with an intersex condition.
Feder and Karkasis explain,
“Newly politicized and no longer restricted to medicine, intersex came to mean many things to different people, fueling widespread disagreement over what diagnoses—and thus who—counted as intersex.” (Feder & Karkazis, 2008, p. 34)
Activists advocated expanding the term intersex to refer to a much wider range of conditions than physicians had traditionally identified. Stirring more controversy, some activists also “embraced intersex as an identity, likening it to any of a number of other categories of gender identity that one can claim.” (Feder & Karkazis, 2008, p. 34)
These developments were resisted by many doctors, as well as parents of children affected by these conditions.
“Not surprisingly, many parents and clinicians found the term’s connotation that the affected person is neither male nor female (or is both male and female) deeply objectionable . . . The term intersex has been viewed as stigmatizing by many doctors and parents and by some of the individuals who have these conditions. For this reason, doctors have largely avoided using the term in the clinical setting despite its widespread use in the medical literature over the last fifty years.” (Feder & Karkazis, 2008, p. 34)
Disorders of Sex Development, or DSD, is a relatively new term, announced in 2006 in a consensus statement of the U.S. and European endocrinological societies. Members of these societies sought to move past divisive arguments over the terms “hermaphrodite” and “intersex.” However, the new terminology sparked immediate controversy. Many people with intersex conditions strongly reject the term DSD as overly medicalized. The term “disorder” is seen as especially problematic because it reinforces the view that gender-atypical bodies are inherently pathological. As one intersex advocate put it, "I am a person, not a disorder." (Feder & Karkazis, 2008, p. 34)
Why did proponents of the term believe that DSD would be preferable to the term intersex? They wanted a term that was less politicized--not everyone born with an intersex condition wanted to associate with intersex activism. They also wanted a term that could help distinguish among a variety of medical conditions, allowing for clinically specific diagnoses that could lead to improved care and outcomes for persons born with atypical sex development.
In their 2008 report, Feder and Karkazis, who have been active in the movement to reform medical treatment of intersex conditions, explain their reasons for cautiously embracing the new terminology, disorders of sex development (DSD):
“The new nomenclature aims to circumvent the fraught history of the terms hermaphrodite and intersex. The use of these terms to identify kinds of people, rather than individuals with conditions that could have profound health consequences, is not only inconsistent with contemporary medical nomenclature but appears to have helped shape unethical aspects of treatment characterizing medical management since at least the 1950s.” (Feder & Karkazis, 2008, p. 34)
According to Feder and Karkazis, the most promising aspect of “DSD” is that it can help distinguish among a range of conditions or disorders that have traditionally been lumped together, thereby shifting the focus to the diverse health care needs of affected individuals—and away from a primary focus on “normalizing” sex anatomy:
“Debate over the nomenclature has focused overwhelmingly on how best to characterize an umbrella term for these conditions, but this focus is misplaced. The critical move is the recommendation that DSD be used together with a system based on clinically descriptive terms—for example, ‘androgen insensitivity syndrome’ and ‘congenital adrenal hyperplasia.’” (Feder & Karkazis, 2008, p. 35)
Disagreement over terminology persists to this day. The term “intersex” is preferred by some, including many intersex advocates. It is also the term used most widely in the media as well as in some medical literature. Others use the term disorder of sex development (DSD) or prefer to refer to specific medical conditions, dispensing with an umbrella term altogether. Additional terminology includes "difference of sex development" or "intersex variation."
Feder, E. & Karkazis, K. (2008, September). What’s in a Name? The Controversy over “Disorders of Sex Development”. The Hastings Center Report. Retrieved from http://med.stanford.edu/content/dam/sm/bioethics/documents/people/resumes/karkazispubs/Whatsinaname.pdf
DeeWho is Dee?
Gender Identity Our core sense of who we are as a man, a woman, a mixture of both, or neither.
Gender Expression How we show up in the world through choices like clothing, hair style, mannerisms or tone of voice.
Attraction How we feel toward others sexually, romantically and/or emotionally.
Biological Sex Physical attributes such as reproductive organs and genitalia, chromosomes, genes and hormone levels.
Want to dig deeper? Read this preview of the article by professors Ellen K. Feder and Katrina Karkazis