1 of 30

INTERSEX 101�Show Up #4intersex – material courtesy of � interACT: Advocates for Intersex Youth �

2 of 30

What do you know�about intersex?

�

3 of 30

There are lots of ways�to be intersex.��

4 of 30

XY�XX�XO�XXY�XXXY

5 of 30

Ovaries

Testes

(can be internal)

Ovotestes

(combination of tissue)

Or undeveloped

streak gonads

6 of 30

Estrogens

Androgens

Convert to estrogen

(androgen insensitive)

Virilize

(androgen sensitive)

7 of 30

Clitoris

Penis

Labia

Scrotum

Labia open to vagina

Scrotum fused, no vagina

8 of 30

Common Parts of Intersex Variations	CAIS (Complete Androgen Insensitivity Syndrome)	Swyer or Gonadal�Dysgenesis	CAH (Congenital Adrenal Hyperplasia)	Klinefelter’s (47 XXY)
Karyotype	XY	XX or XY	XX	XXY
Gonad Type	Internal testes	Streak	Ovaries	External testes (smaller than average)
Sex Hormones Naturally Produced at Puberty	Testosterone from testes	None	Estrogen and above average testosterone	Below average testosterone (may have breast development, infertility)
Androgen Response	Convert to estrogen	Virilize	Virilize	Virilize
External Genital Appearance	“Typical” labia, may have vagina that is short	“Typical” labia	May be considered “ambiguous,” e.g. large clitoris	Often “typical” penis, smaller than average testes
Frequency	1 : 20k to 100k	1 : 150,000	1 : 20k to 36k	1 : 1,100 to 1,500

9 of 30

How common is it�to be intersex?

10 of 30

Intersex people are�0.5% to 2%*�of the population.��* About as common as having twin births (~3%)�** Compared to the U.S. population of transgender adults, self-reporting at 0.6% in a 2016 study

*** The 2025 HHS report estimates there are 5 million Americans with intersex traits

11 of 30

1 in 2,000�are at risk of receiving surgery in infancy to �“normalize” genital appearance.

12 of 30

Intersex kids still face�nonconsensual, medically�unnecessary genital surgeries. ��

Often because of

social discomfort.

13 of 30

Gonadectomy*�Orchiectomy of internal testes�Clitoroplasty / Clitorectomy�Vaginoplasty�Hypospadias repair** ��* in cases where gonads were healthy and producing hormones at puberty�** very high complication rate

What are some of these unnecessary surgeries, specifically? Gonadectomy – the removal of gonads such as ovaries or testes, including when they are healthy and producing hormones. Taking out hormone-producing gonads means the child must be placed on hormone-replacement therapy for the rest of their lives, and can also be sterilizing. Gonadectomy is sometimes said to be necessary to prevent the development of cancer, but for most intersex people, the risk of gonadal malignancy is very low and would not be considered a high enough risk to prompt the organs to be removed in someone who was not intersex – at least not before the individual could weigh their options and give consent. Clitoral surgery is intended to reduce the size of the clitoris so that it looks more “feminine,” and doctors who publish about these surgeries admit that the purpose is cosmetic and to make the body conform more closely to what is expected for a female sex assignment. Clitorectomy, which is complete clitoral removal, is said not to be practiced anymore. Vaginoplasty is the creation or enlarging of a vaginal opening, which some individuals may desire later in life, but it is never necessary to perform this procedure on an infant or young child, and doing so will mean the opening must be dilated with solid objects to keep it from closing after surgery. This can be deeply traumatic for children, who may not have wanted a vagina constructed in the first place. Hypospadias “repair” involves surgery to move the urethral opening to the tip of the penis, and while this might sound relatively benign, this surgery has a very high complication rate that can involve extensive damage to both urinary and sexual function. People who have these surgeries as children often need multiple follow-up procedures to address complications introduced by the first one.

14 of 30

Physical risks:�Scarring�Chronic pain�Loss of sexual sensation/function�Urinary incontinence�Sterilization�Need for lifelong hormone replacement therapy�Complications requiring multiple follow-up surgeries��Psychological risks:�Depression, PTSD, increased risk of suicide�Feelings of shame, isolation, and inadequacy�Sex assignment not matching eventual gender identity�

15 of 30

“If one time in 20 you're cutting�a little boy's penis off,�is that a risk worth taking?”��Anne Tamar-Mattis, quoted in “The Spectrum of Sex Development,” Nature 533: 160-163 (2016).��Other studies have acknowledged rates of

incorrect sex assignment up to 60%.��Ieuan Hughes et al., Consensus Statement on Management of Intersex Disorders, 91 Archives of Disease in Childhood 554 (2006) �

16 of 30

Up to 40% of these surgeries have�complications. Many require�multiple follow-up surgeries.��

17 of 30

�Based on all these risks, why are these procedures not a last resort?��How did we get here?��

18 of 30

In the 1960s, the model of early genital surgery gained traction after a Johns Hopkins psychologist, John Money, popularized the theory that gender is malleable in early childhood, and that a child can be socialized in any gender if they undergo surgery so that their body “matches” that assignment. Importantly, for this to work, the child is not supposed to know that this ever happened, since this could introduce “gender uncertainty” and jeopardize their acceptance of the gender assignment. The case he is famous for – known as the “John/Joan case” – involved a patient, David Reimer, who had his penis badly burned in a circumcision accident as a baby. Dr. Money advised that the best course of action was to raise David as a girl, so he underwent feminizing genital surgery, and his parents renamed and raised him as “Brenda.” This case was widely reported as a success for many years, but it came to light later that David was never the happy patient Dr. Money reported. Once he learned the truth about what was done to him, he transitioned to live as a man, and eventually committed suicide. The theory, however, stuck. Intersex children are still operated on with the belief that it will make it easier for them to accept their gender assignment and psychosocially adjust, though there has never been any proof that this is the case.

19 of 30

"It's easier to dig a hole than to build a pole." ��Intersex activist Cheryl Chase quoting a surgeon

20 of 30

�“We'll get you on hormones so you can develop for your future husband.”��

21 of 30

�“You’re not really a boy.”��

22 of 30

�“You can have real sex one day. We'll just start you on dilation or do a vaginoplasty when you're ready to start dating boys, or when your parents are ready."��

23 of 30

�What can we do?��

24 of 30

interACT uses innovative legal and other strategies, to advocate for the human rights of children born with intersex traits.

25 of 30

World Health Organization�Amnesty International�Human Rights Watch��UN Office of the High Commissioner for Human Rights�UN Special Rapporteur on Torture�NYC Human Rights Commission�San Francisco Human Rights Commission

26 of 30

“Those whose oath or conscience says ‘do no harm’ should heed the simple fact that, to date, research does not support the practice of cosmetic infant genitoplasty.”��Dr. Joycelyn Elders, Dr. David Satcher, and Dr. Richard Carmona, US Surgeons General 15, 16, 17�

27 of 30

28 of 30

1. Never assume.�2. Talk to intersex people.�3. Be aware of your language.

What can you do on a day-to-day basis to help improve the world for intersex people? First, let go of your assumptions. This includes assumptions about what it means to be “male” or “female,” such as assuming that all women have ovaries and get their period, or that no men do. It also includes things like assuming all people want to have heterosexual relationships and penetrative sex. These come out in doctors’ comments to intersex patients about their “future husbands,” and also in the surgical decisions that are made before children have any idea how they will want to express themselves in their relationships. Second, talk to intersex people to find out what they want, how they want to be treated and how to best support them. Third, be aware of the language you’re using. Outdated terms (like the “H” word) can be very harmful, and even hearing the label “DSD” for Disorders of Sex Development can be triggering for some. Be careful also not to unnecessarily gender body parts – phrases like “male chromosomes” can be replaced with “XY chromosomes” to be more accurate.

29 of 30

Support the work of intersex people and intersex communities of color

30 of 30

Questions? Contact:��interACT Advocates for Intersex Youth�info@interactadvocates.org�interactadvocates.org�@interACT_ADV