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Biopolitics
Contesting Intersex: The Dubious Diagnosis
When sociologist Georgiann Davis was a teenager, her doctors discovered that she possessed XY chromosomes, marking her as intersex. Rather than share this information with her, they withheld the diagnosis in order to “protect” the development of her gender identity; it was years before Davis would see her own medical records as an adult and learn the truth. Davis’ experience is not unusual. Many intersex people feel isolated from one another and violated by medical practices that support conventional notions of the male/female sex binary which have historically led to secrecy and shame about being intersex. Yet, the rise of intersex activism and visibility in the US has called into question the practice of classifying intersex as an abnormality, rather than as a mere biological variation. This shift in thinking has the potential to transform entrenched intersex medical treatment.
In Contesting Intersex, Davis draws on interviews with intersex people, their parents, and medical experts to explore the oft-questioned views on intersex in medical and activist communities, as well as the evolution of thought in regards to intersex visibility and transparency. She finds that framing intersex as an abnormality is harmful and can alter the course of one’s life. In fact, controversy over this framing continues, as intersex has been renamed a ‘disorder of sex development’ throughout medicine. This happened, she suggests, as a means for doctors to reassert their authority over the intersex body in the face of increasing intersex activism in the 1990s and feminist critiques of intersex medical treatment.
Davis argues the renaming of ‘intersex’ as a ‘disorder of sex development’ is strong evidence that the intersex diagnosis is dubious. Within the intersex community, though, disorder of sex development terminology is hotly disputed; some prefer not to use a term which pathologizes their bodies, while others prefer to think of intersex in scientific terms. Although terminology is currently a source of tension within the movement, Davis hopes intersex activists and their allies can come together to improve the lives of intersex people, their families, and future generations. However, for this to happen, the intersex diagnosis, as well as sex, gender, and sexuality, needs to be understood as socially constructed phenomena.
A personal journey into medical and social activism, Contesting Intersex presents a unique perspective on how medical diagnoses can affect lives profoundly.
In Contesting Intersex, Davis draws on interviews with intersex people, their parents, and medical experts to explore the oft-questioned views on intersex in medical and activist communities, as well as the evolution of thought in regards to intersex visibility and transparency. She finds that framing intersex as an abnormality is harmful and can alter the course of one’s life. In fact, controversy over this framing continues, as intersex has been renamed a ‘disorder of sex development’ throughout medicine. This happened, she suggests, as a means for doctors to reassert their authority over the intersex body in the face of increasing intersex activism in the 1990s and feminist critiques of intersex medical treatment.
Davis argues the renaming of ‘intersex’ as a ‘disorder of sex development’ is strong evidence that the intersex diagnosis is dubious. Within the intersex community, though, disorder of sex development terminology is hotly disputed; some prefer not to use a term which pathologizes their bodies, while others prefer to think of intersex in scientific terms. Although terminology is currently a source of tension within the movement, Davis hopes intersex activists and their allies can come together to improve the lives of intersex people, their families, and future generations. However, for this to happen, the intersex diagnosis, as well as sex, gender, and sexuality, needs to be understood as socially constructed phenomena.
A personal journey into medical and social activism, Contesting Intersex presents a unique perspective on how medical diagnoses can affect lives profoundly.
233 pages, Kindle Edition
First published September 11, 2015
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392 people want to read
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Displaying 1 - 11 of 11 reviews
January 28, 2019
Any book whose sole image on the front and spine is a scalpel is attention-grabbing! Yet Contesting Intersex is an exploration of the state of intersex advocacy and support groups in the USA in the year 2015 more than it is a general overview of the topic. I had rather naïvely thought it would resemble the Australian author Jane McCredie's excellent Making Girls and Boys: Inside the Science of Sex, which was intended for a much broader audience. Instead, we have a Conclusion chapter that opens with a rather dry terminological focus:
Intersex versus DSD
Much of the book focuses on the controversy over the declaration by the medical community, in conjunction with multiple intersex organisations, that DSD terminology would replace intersex. Intersex is a fuzzy word, a "politicised identity" rather than a definition. Many are very happy to have intersex as their identity - after all, who ever proudly said that they were OK not fitting into a binary of kidney functions and didn't want to be ashamed? Others don't want the in-your-face SEX word front and centre, and like that "framing intersex bodies as a disorder makes them nothing more or less than a biological phenomenon... with the result of fewer stigmatizing outcomes" in spite of the fact "that the word disorder points to that phenomenon as abnormal."
I know the president of Bi Ireland very well, and she has said to me that bi is her preference against bisexual because of the SEXY SEXY MMM SWEATY SEX SEX nature of the word. Lesbian and gay are words that don't immediately bring sex to mind, but identity. Bi can achieve the same. She is hardly a person to be ashamed of her identity, and so those intersex people who are part of the community yet dislike the word intersex to define their condition probably aren't ashamed of themselves either.
Well-meaning scalpel-wielders
Any overview of the aims of intersex advocacy won't be all about words.
Davis' position as a woman with CAIS (the most common intersex condition, which I'll crudely summarise as "XY embryo cannot respond to male hormones and so develops as female, but lacks a female reproductive system and has undescended testes") gave her access to several dozen intersex interviewees and to 10 doctors expert in the intersex field.
It's a little scary. Experts these days seem to genuinely want to do the very best they can for a baby born with ambiguous sex presentation. It's no longer the norm to cruelly sacrifice sexual function for the sake of appearance, nor to assign female sex and gender to the baby because 'it's easier to dig a hole than build a pole.' Yet the desire to normalise seems to be paramount to the point where they do harm babies and children.
Issues that recur include unnecessary intervention in the case of hypospadias, where a baby pees out the bottom rather than the end of its (penis? clitoris? penis?) Experts tend to recommend that the baby be assigned the male sex and gender and surgery be performed to lengthen the urethra and create a new opening at the end of the penis. But what if the guess is wrong? Dr F. describes a case of pressure:
Dr. C is unashamed about his attitude to urethral lengthening, speaking of a father he encountered who didn't want his child to undergo the procedure:
The norm is for experts of different disciplines to get together and then present their conclusions to the parents as the result of several second opinions. The problem is that the parents know nothing of the debate: only the outcome. Davis was invited to attend such meetings, and reports "significant uncertainty about treatment options" being raised. And the pressure is immense. Additionally, the experts may not take all issues into account. Davis cities a 2013 study by biomedical ethicist Jürg Streuli:
Davis's Rejection of Gender Essentialism - She Contradicts Herself
Here's my problem. All throughout the book, Davis criticises doctors, parents and even some fellow intersex people for believing that physical traits can be a guide to assignation of sex and gender. In the final chapter, she finally claims outright: "Genitalia is not predictive of gender performance."
This is clearly wrong. A New York Times article published a year after the publication of Contesting Intersex reported that the estimate of transgender population in the USA had doubled... to a whopping 0.6% of the population!
Even the genitalia of intersex individuals can be a guide. She states herself:
Even if Davis had not contradicted herself, one wonders: how on earth are these doctors supposed to give an opinion and parents to make a decision if the reproductive system of a tiny baby is no guide to its gender identity? Wait until it's a few years old? That's certainly not a possibility in our society. And Davis never gives a hint of her preferred outcome if genitalia is truly no guide.
It is truly a shame that Davis undercuts herself here, because the truths that she reveals are appalling. Parents are lied to about the incidence of cancer risks linked to undescended testes in CAIS girls, and agree to unnecessary surgeries later in childhood even though removing these - typically invisible - testes results in the child needing to take hormone replacement pills for life.
Fascinating Fact about John Money
No book that covers medical intervention in sex assignment could ignore the tragic John/Joan case, where a 22-month old boy whose penis had been entirely destroyed in a botched circumcision was surgically given female genitalia on the recommendation of John Money in the 1970s. The boy was one of identical twins, and the opportunity for proof of Money's theory that gender was irrelevant to birth sex was unmissable. Money released regular lies on 'Joan's' progress, and was exposed by David Reimer, 'Joan' himself, who later committed suicide.
I had heard the sad story multiple times, first through a documentary many years ago, but Davis provides the information (vide Katrina Karkazis, Fixing Sex: Intersex, Medical Authority, and Lived Experience)that a similar case existed where the child, at the age of 26, had a female gender identity - i.e. that Money's theory had been supported in this instance. Davis doesn't explicitly draw the conclusion that the age of reassignment, at 7 months rather than 22, granting the child a far longer span of development at the newly-assigned gender, might have something to do with it. But it's the obvious difference.
I wish Davis had drawn on this to support her thesis that genitalia isn't a predictor of gender. Yet, even if it were completely true, and even if that is the reason why CAIS women usually identify as women... wouldn't it then suggest that parents just raise their intersex child in whatever gender they feel like, on the basis that nurture is all that matters? She shies away from her own implications.
What About the Poor People?
Davis was unable to find any interviewees who weren't affluent. It's hard to find and join support organisations if you're poor. What happens to the silent people with intersex conditions? In the USA, which is where Davis writes about, they certainly won't be getting expert advice, whether good or bad.
We can at least know that as the world becomes more connected, it will become easier and easier for a furtive Google about a weirdly-shaped Down There to lead to understanding and support.
A Happy Update at the end of a Very Long Review
23-year old Pidgeon had a particularly bad experience with surgery. "My clitoris is gone... My vagina looks really fucked up... There's scar tissue there and... penetration hurts." As at publication, Pidgeon had just been made president of interACT, an advocacy organisation for intersex youth, and when I Googled, they were going strong on Twitter @pidgejen.
An enlightening book.
I started 'Contesting Intersex' with one broad question in mind: How did intersex become a disorder of sexual development?
Intersex versus DSD
Much of the book focuses on the controversy over the declaration by the medical community, in conjunction with multiple intersex organisations, that DSD terminology would replace intersex. Intersex is a fuzzy word, a "politicised identity" rather than a definition. Many are very happy to have intersex as their identity - after all, who ever proudly said that they were OK not fitting into a binary of kidney functions and didn't want to be ashamed? Others don't want the in-your-face SEX word front and centre, and like that "framing intersex bodies as a disorder makes them nothing more or less than a biological phenomenon... with the result of fewer stigmatizing outcomes" in spite of the fact "that the word disorder points to that phenomenon as abnormal."
I know the president of Bi Ireland very well, and she has said to me that bi is her preference against bisexual because of the SEXY SEXY MMM SWEATY SEX SEX nature of the word. Lesbian and gay are words that don't immediately bring sex to mind, but identity. Bi can achieve the same. She is hardly a person to be ashamed of her identity, and so those intersex people who are part of the community yet dislike the word intersex to define their condition probably aren't ashamed of themselves either.
Well-meaning scalpel-wielders
Any overview of the aims of intersex advocacy won't be all about words.
Davis' position as a woman with CAIS (the most common intersex condition, which I'll crudely summarise as "XY embryo cannot respond to male hormones and so develops as female, but lacks a female reproductive system and has undescended testes") gave her access to several dozen intersex interviewees and to 10 doctors expert in the intersex field.
It's a little scary. Experts these days seem to genuinely want to do the very best they can for a baby born with ambiguous sex presentation. It's no longer the norm to cruelly sacrifice sexual function for the sake of appearance, nor to assign female sex and gender to the baby because 'it's easier to dig a hole than build a pole.' Yet the desire to normalise seems to be paramount to the point where they do harm babies and children.
Issues that recur include unnecessary intervention in the case of hypospadias, where a baby pees out the bottom rather than the end of its (penis? clitoris? penis?) Experts tend to recommend that the baby be assigned the male sex and gender and surgery be performed to lengthen the urethra and create a new opening at the end of the penis. But what if the guess is wrong? Dr F. describes a case of pressure:
"The mother is concerned that if she does that... the child may later in life reject that, or may want to change to a female sex of rearing, and [will] have gone through that surgery unnecessarily. So the mother is disinclined to do any surgery, and the surgeon is trying to hint her in the direction of doing surgery... What's wrong with sitting down? There's nothing physically wrong with sitting down to urinate."
Dr. C is unashamed about his attitude to urethral lengthening, speaking of a father he encountered who didn't want his child to undergo the procedure:
"And the father said "Well, in our family we celebrate our differences and not try to all be the same and feel the social pressure to do everything like everyone else does... I said, "I do have to say one thing, and I think it's of key importance, that you both see a psychiatrist."
The norm is for experts of different disciplines to get together and then present their conclusions to the parents as the result of several second opinions. The problem is that the parents know nothing of the debate: only the outcome. Davis was invited to attend such meetings, and reports "significant uncertainty about treatment options" being raised. And the pressure is immense. Additionally, the experts may not take all issues into account. Davis cities a 2013 study by biomedical ethicist Jürg Streuli:
The subjects who watched the medicalized video were more likely to opt for surgery on 'their' child than those who watched the demedicalised video.
Davis's Rejection of Gender Essentialism - She Contradicts Herself
Here's my problem. All throughout the book, Davis criticises doctors, parents and even some fellow intersex people for believing that physical traits can be a guide to assignation of sex and gender. In the final chapter, she finally claims outright: "Genitalia is not predictive of gender performance."
This is clearly wrong. A New York Times article published a year after the publication of Contesting Intersex reported that the estimate of transgender population in the USA had doubled... to a whopping 0.6% of the population!
Even the genitalia of intersex individuals can be a guide. She states herself:
AISSG-USA was formed as a support group for those with AIS, the majority of whom are assigned female at birth and identify as women throughout their lives.
Even if Davis had not contradicted herself, one wonders: how on earth are these doctors supposed to give an opinion and parents to make a decision if the reproductive system of a tiny baby is no guide to its gender identity? Wait until it's a few years old? That's certainly not a possibility in our society. And Davis never gives a hint of her preferred outcome if genitalia is truly no guide.
It is truly a shame that Davis undercuts herself here, because the truths that she reveals are appalling. Parents are lied to about the incidence of cancer risks linked to undescended testes in CAIS girls, and agree to unnecessary surgeries later in childhood even though removing these - typically invisible - testes results in the child needing to take hormone replacement pills for life.
Fascinating Fact about John Money
No book that covers medical intervention in sex assignment could ignore the tragic John/Joan case, where a 22-month old boy whose penis had been entirely destroyed in a botched circumcision was surgically given female genitalia on the recommendation of John Money in the 1970s. The boy was one of identical twins, and the opportunity for proof of Money's theory that gender was irrelevant to birth sex was unmissable. Money released regular lies on 'Joan's' progress, and was exposed by David Reimer, 'Joan' himself, who later committed suicide.
I had heard the sad story multiple times, first through a documentary many years ago, but Davis provides the information (vide Katrina Karkazis, Fixing Sex: Intersex, Medical Authority, and Lived Experience)that a similar case existed where the child, at the age of 26, had a female gender identity - i.e. that Money's theory had been supported in this instance. Davis doesn't explicitly draw the conclusion that the age of reassignment, at 7 months rather than 22, granting the child a far longer span of development at the newly-assigned gender, might have something to do with it. But it's the obvious difference.
I wish Davis had drawn on this to support her thesis that genitalia isn't a predictor of gender. Yet, even if it were completely true, and even if that is the reason why CAIS women usually identify as women... wouldn't it then suggest that parents just raise their intersex child in whatever gender they feel like, on the basis that nurture is all that matters? She shies away from her own implications.
What About the Poor People?
Davis was unable to find any interviewees who weren't affluent. It's hard to find and join support organisations if you're poor. What happens to the silent people with intersex conditions? In the USA, which is where Davis writes about, they certainly won't be getting expert advice, whether good or bad.
We can at least know that as the world becomes more connected, it will become easier and easier for a furtive Google about a weirdly-shaped Down There to lead to understanding and support.
A Happy Update at the end of a Very Long Review
23-year old Pidgeon had a particularly bad experience with surgery. "My clitoris is gone... My vagina looks really fucked up... There's scar tissue there and... penetration hurts." As at publication, Pidgeon had just been made president of interACT, an advocacy organisation for intersex youth, and when I Googled, they were going strong on Twitter @pidgejen.
An enlightening book.
November 1, 2021
Just noticed that Goodreads seems to have eaten my review from a few years back, but it's available on my website -
http://www.bogireadstheworld.com/nonf...
http://www.bogireadstheworld.com/nonf...
October 7, 2018
In Contesting Intersex, Georgiann Davis examines how intersex is defined, experienced, and contested in contemporary US society. She argues that power rests in diagnostic labels, tracing the emergence of the disorder of sexual development (DSD) nomenclature when referring to intersex individuals. Davis relies on gender structure theory (see Risman 1998) to argue that intersex is a problem because it disrupts the traditional gender order and the “ideology” of gender, sex, and sexuality as binaries. An interesting read for anyone who wants to deepen their understanding of gender.
June 28, 2022
A fantastic sociological study of intersex (which is so much more than just ambiguous genitalia!), the harms caused by the medical system, and the activism by intersex people and their families. In this moment, as legislatures work to take away the right of trans children to autonomy over their bodies, we should remember that intersex kids have never had autonomy over their bodies: that for many of them, they were surgically "assigned" a genitalia at birth that did not match who they turned out to be. Children, like adults, have a human right to their autonomy.
April 20, 2021
** Read for my 2021 gender and sexuality comprehensive exams **
An interesting study of intersex conditions, some of those who live with them and the often unnecessary medical interventions that only serve to harm intersex children. This book was a good mix of qualitative research, some historical/contemporary intersex issues and theory, though I wish the author had focused a bit more on the former. It was really interesting to hear about the experiences of her participants.
An interesting study of intersex conditions, some of those who live with them and the often unnecessary medical interventions that only serve to harm intersex children. This book was a good mix of qualitative research, some historical/contemporary intersex issues and theory, though I wish the author had focused a bit more on the former. It was really interesting to hear about the experiences of her participants.
July 8, 2020
Preferred ‘intersex: stories and experiences from Australia’, as it had more intersex stories and views (rather than mainly the author and their friends as seen in this book). I think this book was good but there is so much personal experience in this area we lose something sometimes in discouraging needed broader studies and outside voices.
March 10, 2024
A well researched examination of intersex medical treatment, focusing on terminology and the effects thereof, from an intersex individual. This is also a good discussion of informed consent, highlighting the need for continued improvement in current medical practices. Recommended.
April 14, 2018
Great book even better knowing that I’m learning from the author of this book. Gives you a perceptive about intersex and gender that is very really seen unless learned from in a college setting
August 30, 2019
Interesting theoretical frameworks, great information for someone who knew very little about intersex traits, pretty repetitive
November 2, 2023
Incredibly informational while still being engaging!! One of the best books I’ve read for a Soc class
February 28, 2016
I read Contesting Intersex for my Sociology of Gender class. Having next to no prior knowledge regarding intersex individuals and the intersex community, this text supplied myself and my class with a more than adequate representation of what intersex/DSD is. Also, my class was lucky enough to have a video lecture with Davis, which furthered my admiration for her and the progress of the direction she is pushing wide spread intersex advocacy.
Displaying 1 - 11 of 11 reviews