The Fight for the Right to Be Let Alone: A New Frontier in Intersex Rights

 

“The makers of the Constitution conferred the most comprehensive of rights and the right most valued by all civilized men- the right to be let alone.”

• Justice Louis D. Brandeis

 

Intersex rights are the new frontier of LGBT law. In an ever-progressing field of law, advocacy groups are always looking for the next civil rights violation to tackle. Making its way into the spotlight are issues involving the intersex community. An intersex person is someone whose sex characteristics don’t fall along the binary, that is, either presenting completely male or completely female.[1] Intersex is an all-encompassing term for all conditions that fall under this umbrella. Sometimes the characteristics are purely hormonal or internal, and the person doesn’t know they are intersex until later in life, and sometimes the condition is clear from the ambiguous genitalia.[2] Intersex advocacy has most often centered on the latter.

Generally, advocacy has been focused on raising awareness about the human rights issues involved in intersex surgeries, particularly for infants. When an intersex infant is born with ambiguous genitalia, the parents and the doctor have to make a decision regarding the care for the child. The parents must choose whether or not to have gender-affirming surgery on their infant, during which the doctor would remove the other genitalia. Most often, this means removing penile tissue from what would be the clitoris on a female, and making sure the vaginal opening is functional. However, when making the decision of which gender they are affirming, surgeons generally rely on what the simplest procedure would be. This, more often than not, is removing male organs in lieu of female ones, since this is a more simple procedure surgically. However, no genetic testing is usually done. This means that the decision of which gender to raise the child doesn’t rely on hormone levels, clinical research or any reliable data to ensure that the chosen gender is likely to be the one that the child identifies as.[3] The consequences, therefore, are a higher number of these children experience Gender Dysphoria.[4] While only 1% of the general population experiences Gender Dysphoria, up to 10% of these children will experience it.

This clinical model of remedying the ambiguous genitalia before the child has any memory of it is still based in large part on the failed experiment of John Money, a clinical psychiatrist focusing on a nature versus nurture theory for gender identity.[5] Dr. Money was a sexologist, and his most famous experiment involved a pair of twins who were both born genetically male. After a circumcision accident burnt the entire penis off one of the twins, their parents brought them to Money. Based on his work with hermaphrodites,[6] Money had a theory that up to the age of two, the parents could choose what gender to raise their child as, and how they were raised would determine their gender rather than their physical characteristics. He called this the “gender gate” and thought that these twins presented a perfect opportunity to test his theory on a non-intersex person.[7]

He began publishing about his success in the case when the twins were five, and it was instantly heralded as a medical breakthrough. However, Brenda (the twin that was being raised as a girl) was an intensely unhappy child. She presented very masculine and liked things that were traditionally liked by boys, such as sports and hated feminine things, like dresses or dolls. She also hated going to see Money, whose therapy continued to focus on “teaching” Brenda how to be a woman. This involved showing her naked pictures of herself and her brother to show the differences in anatomy, showing her childbirth videos so she knew what her intention was to be in later life as a woman, and encouraging her to get a vaginoplasty (where they would construct a more anatomically correct vaginal opening). Despite this intensive therapy, Brenda never identified as female and became suicidal. When she was thirteen, her parents relented and told her that she was born male, and had been named David. Immediately, Brenda began living as David, and received a settlement from the doctor who botched his circumcision, which he used to for reconstructive genitoplasty to create a new penis. However, he never fully recovered mentally, and ended up committing suicide at the age of 38.[8] His brother, Brian, angry about all the attention David had received growing up, turned to drugs and died of a drug overdose.[9]

Despite the absolutely catastrophic results of this experiment, Money’s theory is still the basis for intersex surgeries today. Doctors feel that if a child is born with intersex characteristics, it is better to operate when they are infants and raise them as the gender that was chosen for them, usually female.  However, these children have to undergo multiple surgeries over the course of their lives, which usually involves a clitoridectomy.[10] This much trauma to any area grows scar tissue, which lessens sensitivity. Because the clitoris is a vital component to sexual pleasure for a woman, this lessened sensitivity leads to sexual dysfunction in a majority of the people who undergo these surgeries. Several studies conducted support this conclusion.[11]In a leading study of women that had undergone these surgeries, all of them that were sexually active had sexual difficulties.[12] 40% of the sexually active women had never achieved an orgasm.[13]

These results indicate that these surgeries should not be standard procedure for infants that present with intersex conditions. However, no firm guidelines for the treatment of intersex conditions existed until recently. The guidance from professional organizations that is used by doctors to guide medical choices (and is used by lawyers for the medical standards needed in medical malpractice cases) were neutral on the topic of when to operate on these children. The Endocrine Society says that while surgery can correct ambiguous genitalia, parents may choose to delay surgery until the child is old enough to help make the decision, but offers no guidance as to if surgery is ever appropriate in infancy.[14] The CARES Foundation, a non-profit that advocates for people with Congenital Adrenal Hyperplasia (one of the most common intersex conditions that presents with ambiguous genitalia) recommends that surgery be postponed until the child is in adolescence (unless there is a medical necessity) so they can be involved in the decision-making and so that the parents are making informed decisions.[15] An organization specializing in rare diseases agrees that unless there is medical necessity, surgery should be postponed until the child is old enough to have a say in their surgery.[16]

The United Nations Committee Against Torture issued a special report in 2013 denouncing these surgeries, saying that abuse in health care settings should be stopped, and that the surgeries performed on intersex children is done without their informed consent, and is therefore tantamount to genital mutilation.[17] While the United States has not taken proactive steps to curtail these surgeries, other countries have. Germany, Switzerland, Australia, Chile and Malta are among some countries that have outlawed these surgeries on children without their consent. InterACT, the United State’s first legal advocacy group focusing on the issues faced by these children has advocated tirelessly since their founding for a policy change in the treatment of intersex infants, citing issues of informed consent and medical ethics as a reason for the change. They partnered with the Palm Center and produced a guidance letter written by three former U.S. Surgeons General, urging the United States to stop this procedure because there is no data proving that growing up with abnormal genitalia has any negative psychological effects on children. [18] Under the Obama administration, on October 26, National Intersex Awareness Day, the Department of State released a statement recognizing the detrimental effects of these surgeries, and affirming a general commitment to supporting bodily autonomy for all people, even though they didn’t specifically condemn the use of these surgeries.[19]

Despite the efforts of advocates, the American Medical Association hadn’t heard a resolution regarding the regulation of surgeries on intersex infants until this past November at their general meeting. Previously, when faced with adopting a policy, the Board of Trustees had deferred the passing of a resolution in favor of a more generalized approach, citing other opinions about pediatric care generally regarding decisions about gender and sexual health. These mainly included encouraging doctors to include the child in the decision whenever possible, and to delay any procedures that weren’t medically necessary until the child was old enough to be involved in the decision-making. However, without an express resolution, care providers have no clear standard of care for which to adhere to, which has been the downfall of any litigation that was attempted to stop these surgeries judicially. But this year, compelled by pressure from medical student associations, intersex advocates and LGBT civil rights groups, the AMA adopted a resolution stating:

That our American Medical Association support optimal management of DSD[20] through individualized, multidisciplinary care that: (1) seeks to foster the well-being of the child and the adult he or she will become; (2) respects the rights of the patient to participate in decisions and, except when life-threatening circumstances require emergency intervention, defers medical or surgical intervention until the child is able to participate in decision making; and (3) provides psychosocial support to promote patient and family well-being.[21]

This resolution is a big step forward for intersex advocates fighting to eradicate these surgeries. The American Medical Association sets the basic standards of care that physicians follow. When the standard of care is not met, the standard for a medical malpractice claim is reached. While intersex advocates have used arguments of fraud statutes or female genital mutilation laws as well, medical malpractice has the strongest teeth in bringing an end to these surgeries through litigation. With the new adoption of this standard, the medical community is taking a stance for these children.

The battle for equality is hard fought, and change comes slowly. But with the tireless efforts of advocates, the United States is working on joining the charge to end these surgeries globally, and restore autonomy and dignity to all people, regardless of how they are born.

 

About the Author: Kylee Reynolds is a 3L at Penn State Law.

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[1] What is Intersex?, Intersex Society of North America (2008) http://www.isna.org/faq/what_is_intersex

[2] Id.

[3] Medically Unnecessary Surgeries on Intersex Children in the U.S., Human Rights Watch (2017) https://www.hrw.org/report/2017/07/25/i-want-be-nature-made-me/medically-unnecessary-surgeries-intersex-children-us

[4] Ranna Parekh, What is Gender Dysphoria?, American Psychiatric Association (February 2016) https://www.psychiatry.org/patients-families/gender-dysphoria/what-is-gender-dysphoria

[5] Dr. Money and the Boy With No Penis, British Broadcasting Company (September 14, 2014) http://www.bbc.co.uk/sn/tvradio/programmes/horizon/dr_money_prog_summary.shtml

[6] This is the former name for people with intersex characteristics

[7] Supra at 5

[8] Elaine Woo, David Reimer, 38: After Botched Surgery, He Was Raised as a Girl in Gender Experiment, Los Angeles Times (May 13, 2004) http://articles.latimes.com/2004/may/13/local/me-reimer13

[9] John Calapinto, Gender Gap, Slate (June 3, 2004) http://www.slate.com/arts/2017/12/looking-back-at-love-actuallys-workplace-harassment.html

[10] The removal of the clitoral tissue

[11] See: Sarah Creighton & Catherine Minto, Managing Intersex, PubMed Central, (2001); Naomi S. Crouch et al., Sexual Function and Genital Sensitivity Following Feminizing Genitoplasty for Congenital Adrenal Hyperplasia, Jour. of Urology (February 2008); Maria New & Alan Parsa, Review: Steroid 21-Hydroxylase Deficiency in Congenital Adrenal Hyperplasia, Jour. of Steroid Biochemistry and Molecular Biology (January 2017)

[12] Catherine Minto et al., The Effect of Clitoral Surgery on Sexual Outcome Individuals Who Have Intersex Conditions with Ambiguous Genitalia: a Cross-Sectional Study, Lancet (April 2003)

[13] Id.

[14] Phyllis W, Speiser et al., Congenital Adrenal Hyperplasia Due to Steroid 21-Hydroxylase Deficiency: An Endocrine Society Clinical Practice Guideline, Jour. Of Clinical Endocrinology and Metabolism (September 1, 2010)

[15] What We Do, CARES Foundation (2012) https://www.caresfoundation.org/what-we-do/

[16] Phyllis W. Speiser et al., Congenital Adrenal Hyperplasia, National Organization for Rare Disorders (2017) https://rarediseases.org/rare-diseases/congenital-adrenal-hyperplasia

[17] G.A. Res. 13/10577 ¶ 76 (Feb 1, 2013).

[18] M. Joycelyn Elders et al., Re-Thinking Genital Surgeries on Intersex Infants, Palm Center (June 2017) http://www.palmcenter.org/wp-content/uploads/2017/06/Re-Thinking-Genital-Surgeries-1.pdf

[19] Press Statement, Department of State, In Recognition of Intersex Awareness Day (October 26, 2016) (on file with department)

[20] “Disorders of Sexual Development” (another term for people with intersex conditions)

[21] Patrice M. Harris, Supporting Autonomy for Patients with Differences of Sex Development (DSD), American Medical Association (2017)