Sorting out terms
Intersex variations have long stirred argument and debate. In fact, the term intersex is itself controversial, as are other labels used to describe people with differences in biological sex traits or reproductive anatomy.
Why so much contention? Historian Elizabeth Reis explains what's at stake in arguments over terminology:
"How to name a diverse set of conditions involving aspects of external genitalia, sex chromosomes, internal reproductive anatomy, and gender identity raises political as well as medical questions.The choice of nomenclature influences not only how doctors interpret medical situations but, equally as important, how parents view their affected children, how intersex people understand themselves, and how others not directly involved in medical settings . . . conceive of and theorize about gender, sex, and the body" (Reis, 2007) .
Long story short, the language we use to describe differences in sex development has significant implications for intersex persons and how we understand variations in all our bodies.
To grasp the intensity of current debates, it's useful to see how terminology relating to variations in sex development has evolved over time, with language frequently reflecting hurtful and mistaken views of persons with differences in sex traits and reproductive anatomy.
Hermaphrodite is an older term you might know; it has fallen out of use and is generally considered offensive. Ellen K. Feder and Katrina Karkazis of the Hastings Center, a bioethics research institute, 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 variation in biological sex traits. It’s also linked with the mindset that people with differences in sex traits or reproductive anatomy are freaks or even monsters. In fact, some circus sideshows and carnivals featured so-called “hermaphrodites” as part of their act.
Reis notes that demeaning terms also pervaded early medical discourse regarding persons with atypical sex development. In addition to hermaphrodite, "derogatory terms such as freak of nature, hybrid, impostor, sexual pervert, and unfortunate creature pervade early medical literature" (Reis, 2007).
Intersex is a term that today is used widely in the media and other circles, but it actually dates to the early 20th century.
Feder and Karkazis explain that intersex was first used by researchers and medical doctors:
“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 began using the term to define a broad community of people with differences in sex traits or reproductive organs. 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 variation.
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. While most supported raising children with atypical sex development as boys or girls, some 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 some parents of affected children, who viewed "intersex" as stigmatizing and overly politicized or mistakenly associated the term with sexuality and eroticism (Reis, 2007).
Disorders of Sex Development, or DSD, a relatively new term, was 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.” 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 with atypical biological sex traits, and translate more readily for insurance coverage of necessary care.
In their 2008 report, Feder and Karkazis, who have been active in the movement to reform medical treatment of intersex persons, explained 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 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).
Difference in sex development/variation in sex development
The new terminology promised clarity for the medical community and some relief to parents concerned about the connotations of intersex, but it immediately produced an uproar within the intersex community. Many people strongly rejected "disorder of sex development" as overly medicalized--the long history of medical mistreatment and pathologizing of intersex persons made them particularly wary of doctors and their terminology.
More specifically, the term “disorder” was seen as problematic, reinforcing the view that gender-atypical bodies are inherently pathological and need to be fixed. As one intersex advocate put it, "I am a person, not a disorder" (Feder & Karkazis, 2008, p. 34).
Despite the controversy, disorder of sex development continues to be the preferred terminology for many within the medical community. But alternative nomenclature is on the rise, including differences of sex development and variations in sex development. This language also reflects insights into the complexities of biological sex, with researchers noting that binary understandings are inadequate to capture the variation in all our bodies--not just those of intersex people.
A recent survey by researchers at the Children's Hospital of Chicago revealed that individuals with atypical biological sex traits and their parents/caregivers overwhelmingly prefer the term intersex, along with variation in sex development and differences of sex development, over disorders of sex development. Many also reported having had a negative emotional reaction to terminology used by physicians involved in their treatment; some had changed providers as a consequence (Johnson, 2017).
Based on these and related findings, some in the medical community are calling for a reconsideration of current practice. “We need to work closely with advocates to reevaluate the words we use to refer to these conditions,” states Emily K. Johnson, MD, the lead author of the Chicago study, who has called for a collaborative effort among medical, research and advocacy communities to establish terminology that can better fit the needs of intersex persons, their parents/caregivers and the medical community. “The words we use make a huge difference to patients and their families,” she notes. “It is imperative that clinicians choose terms that promote access to care rather than create barriers” (Children's Hospital of Chicago, 2017).
Given the long history of stigmatizing persons with differences in sex characteristics, it is a welcome turn of events to have medical practitioners like Johnson seeking such a collaborative approach. While differences and disagreements are bound to continue--the intersex community, after all, is itself diverse and variable--the overall trend appears to be in the direction of respecting the dignity, interests and perspectives of intersex persons and their families.
About the author--Kathleen Clark is Chief Learning Officer of Identiversity Inc. She lives with her family in Charlotte, NC and writes widely on topics relating to diversity, equity and inclusion.
Ann and Robert H. Lurie Children's Hospital of Chicago. (2017). Term "Disorders of Sex Development May Have Negative Impact." Newswise. https://www.newswise.com/articles/term-disorders-of-sex-development-may-have-negative-impact
Feder, E. & Karkazis, K. (2008). What’s in a name? The controversy over “Disorders of Sex Development”. The Hastings Center Report, 38(5), 33-36. http://med.stanford.edu/content/dam/sm/bioethics/documents/people/resumes/karkazispubs/Whatsinaname.pdf
Johnson, Emilie K., et al. (2017). Attitudes towards "disorders of sex development" nomenclature among affected individuals. Journal of Pediatric Urology. V. 13, no. 608.E1-608.E8.
Reis, Elizabeth. (2007). Divergence or Disorder?: the politics of naming intersex. Perspectives in Biology and Medicine. V. 50, no. 4., pp. 535-543.
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