Fixing Sex

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Fixing Sex: Intersex, Medical Authority, and Lived Experience
Fixing Sex, Karkazis (cover).jpg
Author Katrina Karkazis
CountryUnited States
LanguageEnglish
GenreMedicine and health sciences
Publisher Duke University Press
Publication date
November 14, 2009
Media typePrint (Paperback and Hardback) and E-book
Pages384
ISBN 978-0822343189

Fixing Sex: Intersex, Medical Authority, and Lived Experience, a book by Stanford anthropologist and bioethicist Katrina Karkazis, was published in 2008. Described as "thoughtful", "meticulous", and an "authoritative treatise on intersex", [1] the book examines the perspectives of intersex people, their families, and clinicians to offer compassionate look at the treatment of people born with atypical sex characteristics.

Contents

Synopsis

In a scholarly work, Karkazis draws heavily on interviews with intersex adults, parents, and physicians to explore how intersex is understood and treated. In part 1, she reviews the history of treatment for intersex traits, highlighting the work of John Money and the introduction of the, then new, terms "gender", "gender role" and "gender identity". She explores the events following publication of Milton Diamond's study of the David Reimer or "John/Joan" case, and the ways in which public opinion impacted on medical treatment. In part 2, Karkazis presents an analysis of current medical approaches to intersex, and the risks involved, in the wake of a 2006 "consensus statement on the management of intersex disorders". [2] She also reviews the methods utilised to assign a sex of rearing to intersex infants, such as genitals and penis size, chromosomes, fertility, "sexing of the brain", and parental wishes; these impact upon determination whether or not to proceed with early genital surgery. [3] Part 3 interviews parents of children with complete androgen insensitivity syndrome and congenital adrenal hyperplasia, and adults with intersex experiences. Part 3 also looks at activism by intersex organizations.

Reception

The book has been well received by both clinicians and intersex groups. Gary Berkovitz, writing in the New England Journal of Medicine states that Karkazis's analysis is fair, compelling, and eloquent; "Current consensus guidelines recommend early separation of the vagina and urethra for female subjects with abnormalities in the formation of the sex organs... Karkazis presents a compelling argument for the deferment of subsequent surgery until the patient is able to decide." [2] Elizabeth Reis, reviewing the book in the American Journal of Bioethics, states that the book identifies risk of incontinence, fistulas, scarring and lack of physical sensation arising from surgical intervention, and the psychological harm caused by the knowledge that "one's genitals are 'wrong,' requiring constant medical scrutiny and 'fixing'. It "masterfully examines the concerns and fears of all those with a stake in the intersex debate: physicians, parents, intersex adults, and activists. ... Karkazis’s honest, multi-pronged approach poses critical questions." [4] Mijeon in the American Journal of Human Genetics writes that the "conclusion is quite fitting", "the history of thinking about the body ... can be highly politicized and controversial". [3] Kenneth Copeland, former president of the Lawson Wilkins Pediatric Endocrine Society, describes the book as "Masterfully balancing all aspects of one of the most polarizing, contentious topics in medicine... the most recent authoritative treatise on intersex." [1]

Gayle Rubin describes the book as "meticulous, sensitive, and brilliantly executed". [1] Arlene Baratz (Accord Alliance) describes the book as "a velvet-gloved punch to the gut", "astonishing, a tale told straight from the mouths of affected adults, parents, and physicians in tender and lyrical prose." [5] Intersex community organization Organisation Intersex International Australia regards the book as "approachable," "compelling and recommended reading". [6]

The book was referenced by Involuntary or coerced sterilisation of intersex people in Australia, a 2013 report of a committee of the Senate of Australia in 2013. [7]

Awards and recognition

The book was nominated for the Margaret Mead Award, 2010, and a finalist for the Lambda Literary Award, 2009. [1]

Related Research Articles

Intersex medical interventions

Intersex medical interventions, also known as intersex genital mutilations (IGM) are surgical, hormonal and other medical interventions performed to modify atypical or ambiguous genitalia and other sex characteristics, primarily for the purposes of making a person's appearance more typical and to reduce the likelihood of future problems. The history of intersex surgery has been characterized by controversy due to reports that surgery can compromise sexual function and sensation, and create lifelong health issues. Timing, evidence, necessity and indications for surgeries in infancy, adolescence or adult age have been controversial, associated with issues of consent.

History of intersex surgery

The history of intersex surgery is intertwined with the development of the specialities of pediatric surgery, pediatric urology, and pediatric endocrinology, with our increasingly refined understanding of sexual differentiation, with the development of political advocacy groups united by a human qualified analysis, and in the last decade by doubts as to efficacy, and controversy over when and even whether some procedures should be performed.

Organisation Intersex International

The Organisation Intersex International (OII) is a global advocacy and support group for people with intersex traits. According to Milton Diamond, it is the world's largest organization of intersex persons. A decentralised network, OII was founded in 2003 by Curtis Hinkle. Upon Hinkle's retirement, American intersex activist Hida Viloria served as Chairperson/President elect from April 2011 through November 2017, when s/he resigned in order to focus on OII's American affiliate, OII-USA's transition into the independent American non-profit, the Intersex Campaign for Equality.

Disorders of sex development medical conditions involving the reproductive system

Disorders of sex development (DSDs), also known as differences in sex development, diverse sex development and variations in sex characteristics (VSC), are medical conditions involving the reproductive system. More specifically, these terms refer to "congenital conditions in which development of chromosomal, gonadal, or anatomical sex is atypical."

Intersex Uncommon congenital variations of sex-associated characteristics

Intersex people are individuals born with any of several variations in sex characteristics including chromosomes, gonads, sex hormones or genitals that, according to the Office of the United Nations High Commissioner for Human Rights, "do not fit the typical definitions for male or female bodies". Though the range of atypical sex characteristics may be obvious from birth through the presence of physically ambiguous genitalia, in other instances, these atypical characteristics may go unnoticed, presenting as ambiguous internal reproductive organs or atypical chromosomes that may remain unknown to an individual all of their life.

Rebecca M. Jordan-Young, is an American feminist scientist and gender studies scholar. Her research focuses on social medical science, sex, gender, sexuality, and epidemiology. She is an Associate Professor of Women’s, Gender, and Sexuality Studies at Barnard College.

Intersex Human Rights Australia

Intersex Human Rights Australia (IHRA) is a voluntary organisation for intersex people that promotes the human rights and bodily autonomy of intersex people in Australia, and provides education and information services. Established in 2009 and incorporated as a charitable company in 2010, it was formerly known as Organisation Intersex International Australia, or OII Australia. It is recognised as a Public Benevolent Institution.

Georgiann Davis is an associate professor of sociology at University of Nevada, Las Vegas and author of the book Contesting Intersex: The Dubious Diagnosis. Davis formerly held a similar position at Southern Illinois University Edwardsville. Born with Androgen Insensitivity Syndrome, she writes widely on intersex issues and the sociology of diagnosis.

Morgan Carpenter

Morgan Carpenter is a bioethicist, intersex activist and researcher. In 2013 he created the intersex flag, and became president of Intersex Human Rights Australia. He is now a co-executive director. In 2015, he cofounded a project to mark Intersex Awareness Day.

Katrina Karkazis American anthropologist and bioethicist

Katrina Alicia Karkazis is an anthropologist and bioethicist. She is the Carol Zicklin Endowed Chair in the Honors Academy at Brooklyn College, City University of New York and a senior research fellow with the Global Health Justice Partnership at Yale University. She has written widely on testosterone, intersex issues, sex verification in sports, treatment practices, policy and lived experiences, and the interface between medicine and society. In 2016, she was jointly awarded a Guggenheim Fellowship with Rebecca Jordan-Young.

Literature about intersex

Intersex, in humans and other animals, describes variations in sex characteristics including chromosomes, gonads, sex hormones, or genitals that, according to the UN Office of the High Commissioner for Human Rights, "do not fit typical binary notions of male or female bodies".

Intersex human rights Human rights for intersex people

Intersex people are born with sex characteristics, such as chromosomes, gonads, or genitals, that, according to the UN Office of the High Commissioner for Human Rights, "do not fit typical binary notions of male or female bodies."

Quigley scale Rating scale for morphology of human genitalia

The Quigley scale is a descriptive, visual system of phenotypic grading that uses seven classes between "fully masculinized" and "fully feminized" genitalia. It was proposed by pediatric endocrinologist Charmian A. Quigley et al. in 1995. It is similar in function to the Prader scale and is used to describe genitalia in cases of androgen insensitivity syndrome, including complete androgen insensitivity syndrome, partial androgen insensitivity syndrome and mild androgen insensitivity syndrome.

Discrimination against intersex people

Intersex people are born with sex characteristics, such as chromosomes, gonads, or genitals that, according to the UN Office of the High Commissioner for Human Rights, "do not fit typical binary notions of male or female bodies". "Because their bodies are seen as different, intersex children and adults are often stigmatized and subjected to multiple human rights violations".

Intersex and LGBT Relationship between different sex and gender minorities.

Intersex people are born with sex characteristics that "do not fit the typical definitions for male or female bodies." They are substantially more likely to identify as lesbian, gay, bisexual, or transgender (LGBT) than the non-intersex population, with an estimated 52% identifying as non-heterosexual and 8.5% to 20% experiencing gender dysphoria. Although many intersex people are heterosexual and cisgender, this overlap and "shared experiences of harm arising from dominant societal sex and gender norms" has led to intersex people often being included under the LGBT umbrella, with the acronym sometimes expanded to LGBTI. However, some intersex activists and organisations have criticised this inclusion as distracting from intersex-specific issues such as involuntary medical interventions.

Intersex rights in Australia

Intersex rights in Australia are protections and rights afforded to intersex people through statutes, regulations, and international human rights treaties, including through the Sex Discrimination Act 1984 (Cth) which makes it unlawful to discriminate against a person based upon that person's intersex status in contexts such as work, education, provision of services, and accommodation.

Intersex rights in the United States

Intersex people in the United States have some of the same rights as other people, but with significant gaps, particularly in protection from non-consensual cosmetic medical interventions and violence, and protection from discrimination. Actions by intersex civil society organizations aim to eliminate harmful practices, promote social acceptance, and equality. In recent years, intersex activists have also secured some forms of legal recognition.

Intersex human rights reports

Intersex people are born with sex characteristics, such as chromosomes, gonads, or genitals that, according to the UN Office of the High Commissioner for Human Rights, "do not fit the typical definitions for male or female bodies". Such variations may involve genital ambiguity, and combinations of chromosomal genotype and sexual phenotype other than XY-male and XX-female.

Genetic diagnosis of intersex

Intersex people are born with variations in physical and sex characteristics including those of the chromosomes, gonads, sex hormones, or genitals that, according to the UN Office of the High Commissioner for Human Rights, "do not fit the typical definitions for male or female bodies". Such variations may involve genital ambiguity, and combinations of chromosomal genotype and sexual phenotype other than XY-male and XX-female. Preimplantation genetic diagnosis allows the elimination of embryos and fetuses with intersex traits and thus has an impact on discrimination against intersex people.

References