Intersex Rights and Reproductive Justice IF/WHEN/HOW ISSUE BRIEF

Transcription

1 Intersex Rights and Reproductive Justice IF/WHEN/HOW ISSUE BRIEF

2 2 INTERSEX RIGHTS AND REPRODUCTIVE JUSTICE / IF/WHEN/HOW ISSUE BRIEF Contents INTRODUCTION 3 DEFINITION AND STATISTICS 3 MEDICAL RESPONSE TO INTERSEX INFANTS3 MEDICAL CONTROVERSIES 4 ACTIVISM AND CHANGE 5 LAW & POLICY 7

3 3 INTERSEX RIGHTS AND REPRODUCTIVE JUSTICE / IF/WHEN/HOW ISSUE BRIEF INTRODUCTION If/When/How recognizes that most law school courses are not applying an intersectional, reproductive justice lens to complex issues. To address this gap, our issue briefs and primers are designed to illustrate how law and policies disparately impact individuals and communities. If/When/How is committed to transforming legal education by providing students, instructors, and practitioners with the tools and support they need to utilize an intersectional approach. If/When/How, formerly Law Students for Reproductive Justice, trains, networks, and mobilizes law students and legal professionals to work within and beyond the legal system to champion reproductive justice. We work in partnership with local organizations and national movements to ensure all people have the ability to decide if, when, and how to create and sustain a family. DEFINITION AND STATISTICS In discussing intersex issues, it is important to accurately and thoughtfully describe what it means to be intersex. According to interact Advocates for Intersex Youth, Intersex is an umbrella term describing people born with biological characteristics such as reproductive or sex anatomy and/or a chromosome pattern that [does not] fit the typical definitions of male or female. 1 Not all medical professionals agree on what constitutes an intersex condition, 2 but people generally labeled as intersex include those who possess variations in their chromosomes, genitals, or internal organs such as testes or ovaries. 3 The following list illustrates possible variations that may indicate intersex traits: Internal and external reproductive organs of different sexes; Internal reproductive organs that represent a combination of typically male and female organs (i.e. one or more ovotestes); Genitals that do not appear typically male or female (e.g., a large clitoris and shallow or absent vagina, or a micropenis with an opening in the scrotum that looks like a vagina); Atypical chromosomal pattern (such as XXY, XO, or mosaic chromosomes); or Certain hormonal abnormalities (such as congenital adrenal hyperplasia or androgen insensitivity syndrome). 4 Although some intersex characteristics are identified at birth, some intersex traits remain ambiguous until a person reaches puberty or adulthood. 5 Estimates of the frequency of intersex status range widely due to the cultural practice of concealment, which ensures some individuals never know they were born intersex, 6 and due to disagreements over the definition of what counts as an intersex configuration. 7 When statistics refer to ambiguous genitalia, the estimate for intersex births is 1 in every 2,000 live births. 8 Expanded definitions of intersex yield that about 1 in every 100 births is intersex, or 1.7% of the population. 9 In approximately 1 in every 1,500 to 2,000 live births, the baby s genitalia visibly differs from standard male or female genitalia to such an extent that a sex differentiation specialist is consulted. 10 MEDICAL RESPONSE TO INTERSEX INFANTS Since the 1960 s, doctors have utilized the concealment model as the standard of care for intersex infants. 11 The concealment model involves the early assignment of gender and early and irreversible genital-normalizing surgery. 12 When doctors utilize the concealment method, the intersex child s condition is kept secret from neighbors, relatives, caregivers, and the intersex person, even into adulthood. 13 Although intersex traits do not pose any physical harm to most intersex infants, doctors have historically treated the birth of an intersex infant as a medical emergency pressuring parents to consent to immediate surgery. 14 Today, some doctors still perform early surgical interventions on intersex infants, despite a lack of evidence demonstrating any success of the concealment model. 15 However, the

4 4 INTERSEX RIGHTS AND REPRODUCTIVE JUSTICE / IF/WHEN/HOW ISSUE BRIEF work of intersex advocates is influencing medical norms. Some doctors are now opposed to early surgical intervention and, instead, employ a team of specialists to work with parents and the intersex person. 16 Gender Assignment: Gender assignment of an intersex infant determines what sex will be surgically constructed. 17 Prior to gender assignment, doctors often review the baby s chromosome pattern, internal reproductive organs such as gonads, and external genitalia. 18 However, doctors often assign gender to intersex infants based on what they determine to be a positive surgical outcome. Positive surgical outcomes are based on cosmetic, heteronormative ideals. For instance, emphasis is placed on the intersex person s potential to participate in heteronormative sex in adulthood, as opposed to the preservation of the intersex person s adult orgasmic potential or fertility. 19 Harm of Surgery: The medical field has justified the use of early surgical intervention on intersex infants by stating that surgeries assist children in growing up normal and help children integrate more easily into society. 20 However, there is insufficient evidence demonstrating that atypical genitalia contribute to the psychological and social harm of intersex children. Instead, evidence shows that early surgical intervention causes irreversible physical and psychological damage. In 2017, three former US Surgeons-General said, These surgeries violate an individual s right to personal autonomy over their own future. 21 The following demonstrates some of the harmful effects of early genital surgery: Incontinence; Decreased or destroyed sexual sensation, including inability to orgasm; Chronic pain and scar tissue; Additional surgery following from complications due to the first surgery; Shame, depression, and post-traumatic stress disorder; Lifelong needs for hormone therapy; Risk of anesthetic neurotoxicity resulting from surgical procedures on young children; Sterilization the denial of the fundamental right to reproduction. 22 In performing early genital surgery, doctors also risk surgically assigning the wrong sex, which results in children growing up to reject the sex irreversibly assigned to them. 23 Although the risk of surgically assigning the wrong sex is determined by each individual child s intersex traits, it is estimated that this risk may be as high as 40%. 24 Early genital surgery also results in extensive psychological damage due to repeated genital examinations and photography [and the] exposure of their bodies to multiple practitioners. 25 In Human Rights Watch s 2017 report on intersex medical care, many intersex adults reported feeling dread and horror when seeking medical attention. Culturally, the prevalence and concealment of genital surgery on intersex children may reinforce the notion that intersex bodies are not normal and perpetuate related harmful attitudes such as homophobia and transphobia. 26 If a doctor follows the concealment method of treatment, it is likely that parents will make a decision about their child s treatment after receiving only information that is vague, misleading, or colored by gender bias. 27 In the past, the decision about whether to perform genital surgery was sometimes made unilaterally by the doctor without consulting the parents. 28 MEDICAL CONTROVERSIES Clitoral Reduction/Clitoroplasty: a clitoral reduction surgery which shortens the clitoris in young girls with intersex conditions. 29 The procedure is purely cosmetic, and whether a clitoris is too large is completely subjective. 30 A 2003 study found that 18 women who underwent clitoral reduction surgery experienced higher rates of nonsensuality (78%) and of inability to achieve orgasm (39%) than did the ten who had not had surgery. 31 The clitoroplasty practices of pediatric urologist Dr. Poppas increased awareness of the procedure. 32 Poppas performed nerve sparing ventral clitoroplasty on 51 patients with enlarged clitorises. 33 His studies sparked controversy in part due to his follow-up methods for testing clitoral sensitivity, which include using cotton-tip applicators and, in some cases, a vibrating device, and asking patients to rate the sensations with their parents present during the examination. 34 In a letter to Human Rights Watch dated June 29, 2017, Dr. Poppas stated that his medical team has not utilized clitoral sensory testing since before

5 5 INTERSEX RIGHTS AND REPRODUCTIVE JUSTICE / IF/WHEN/HOW ISSUE BRIEF Medical professionals and patient advocates have expressed concern about possible psychological effects and future sexual function, the lack of institutional ethics oversight for this type of sensory testing, and concerns that parents are not being provided with adequate information about the risks associated with clitoroplasties or possible alternatives to the surgery. 36 Controversial Medication: Some physicians have recommended that pregnant women with history of giving birth to children with congenital adrenal hyperplasia (CAH) (or genetic predisposition to the condition) take dexamethasone, or dex, an anti-inflammatory steroid, 37 during the early stages of the pregnancy. 38 CAH is caused by the lack of an enzyme required by the adrenal glands and results in heightened production of the male sex hormone androgen. 39 Girls with CAH may experience abnormal periods or failure to menstruate, the early appearance of armpit and pubic hair, excessive hair growth or facial hair, and some enlargement of the clitoris. 40 Early prenatal exposure to dex has been known to prevent some of the symptoms in girls with CAH. 41 However, the off-label use of dex to treat CAH has not been subject to extensive clinical research. 42 There is concern that doctors may not be adhering to guidelines requiring the patient s written informed consent; furthermore, amassing knowledge about the use of prenatal dex through off-label treatment leaves patients without the ethics-committee oversight guaranteed to participants in clinic research studies. 43 Doctors and researchers have also criticized the practice of prescribing dex for the way it normalizes gender behavior, which exceeds the scope of clinical care. 44 ACTIVISM AND CHANGE Historically, people with intersex traits went largely unnoticed in the legal, medical, and religious communities. 45 Consequently, non-surgical alternatives are the oldest method of treatment for people with intersex traits. 46 In the late nineteenth century, cosmetic surgical interventions for intersex conditions began to emerge. 47 Most of these surgeries were performed on intersex adults, at their request. However, doctors in the 1950 s began to view intersex as a psychosocial problem, which eventually led to the surgical removal and reconstruction of infants reproductive organs and the concealment method. In the 1990 s, intersex activists began advocating for their human rights in response to the harms imposed upon intersex children and adults by the medical industry. 48 Following are some of the highlights of the intersex rights movement: In 1993, Cheryl Chase founded the Intersex Society of North America (ISNA). 49 ISNA s mission is to end shame, secrecy, and unwanted genital surgeries for people born with an anatomy that someone decided is not standard for male or female. 50 Intersex activists created International Intersex Awareness Day on October 26, 1996 when they protested the American Academy of Pediatrics national conference. 51 In response to the protest, AAP issued a statement on the treatment of intersex children stating that early genital surgery minimized the emotional, cognitive, and body image development of intersex people. 52 In 2000, the AAP declared the birth of intersex children a social emergency and urged early genital surgery, despite acknowledging that few studies have been done that address the social, psychological, and sexual outcomes of those who undergo early genital surgery. 53 In 1997, David Reimer, an intersex activist, denounced the concealment model and the intersex experiments of Dr. John Money. 54 David Reimer s account was published in Milton Diamond and Keith Sigmondson s paper, which urged alternatives to early genital surgery. In 2006, a group of international human rights experts developed the Yogyakarta Principles to provide a universal guide for human rights regarding sexual orientation and gender identity. 55 The following two principles are of particular relevance: o States shall [t]ake all necessary legislative, administrative and other measures to ensure that no child s body is irreversibly altered by medical procedures in an attempt to impose a gender identity without the full, free and informed consent of the child in accordance with the age and maturity of the child and guided by the principle that in all actions concerning children, the best interests of the child shall be a primary consideration. 56 o States shall [e]stablish child protection mechanisms whereby no child is at risk of, or subjected to, medical abuse. 57

6 6 INTERSEX RIGHTS AND REPRODUCTIVE JUSTICE / IF/WHEN/HOW ISSUE BRIEF In 2010, the Office of Human Research Protections and the US Food and Drug Administration called for an investigation of possible human research violations of intersex children and fetuses. 58 In 2011, 24 activists from across the world gathered to hold the first International Intersex Forum in Brussels. 59 In addition, the United Nations Committee Against Torture expressed concern regarding the lack of informed consent in cases of early genital surgery. In 2013, activists reconvened for the third International Intersex Forum and published the Malta Declaration, calling for an end to mutilating and normalising genital surgeries. 60 It was not until 2013 that many international and medical organizations began denouncing early genital surgery in favor of alternative means of treatment. 61 During that time, the AAP began advocating for psychological care prior to gender-affirming surgery. 62 In addition, the United Nations classified non-consensual genital normalizing surgery on intersex children as a form of surgery that met the criteria for torture. Further, the United Nations stated that such surgeries are always prohibited by international law. 63 Finally, the World Health Organization issued a statement publicly opposing early genital or sterilizing surgeries on intersex children. 64 In 2017, intersex activists from across the globe called for an end to early genital surgery. Intersex activists from Australia and New Zealand issued the Darlington Statement, which called for the immediate prohibition and criminalization of surgical and hormonal interventions that alter the sex characteristics of infants and children and are performed without consent. 65 In Europe, intersex activists issued the Vienna Statement, which observed that UN bodies, in addition to regional and national human rights groups, have called on governments, policy makers[,] and stakeholders to put an end to human rights violations faced by intersex people. 66 Finally, in 2017, the fourth annual International Intersex Forum was held in Amsterdam. At the forum, activists discussed infanticide, intersex genital mutilation[,] and other harmful medical practices in addition to other human rights issues intersex people experience. 67 In response to the work of intersex activists and criticisms of the concealment method, the medical community has begun to reevaluate its procedures. 68 Some doctors now elect not to conduct surgery until the patient is old enough to be part of the decision-making process. 69 Other doctors continue to perform early surgery, believing that growing up with atypical genitals would be harmful or confusing to a child. 70 The AAP has developed guidelines for caring for intersex children 71 : Gender assignment should be avoided prior to an expert evaluation for newborns; Evaluation and long-term management should be performed at a facility with an experienced and qualified multidisciplinary team; All individuals should receive a gender assignment; Open communication with patients and families and participation in decision-making is essential and encouraged; Patient and family concerns should be respected and addressed in strict confidence. 72 ISNA has its own patient-centered model of care and has issued the following recommendations: 73 Intersex patients and their parents should be treated in an open, shame-free, supportive, and honest way, consistently be told the truth and be given copies of medical records as soon and as often as they ask for them; Patients and parents should be provided with access to trained psychologists and social workers, and [p]arental distress should not be treated with normalizing surgery on children; Patients and parents should be connected to other intersex adults, children, and parents of intersex children for support; Patients should be assigned a gender as a boy or girl depending on which of those genders the child is more likely to feel as she or he grows up. Genital surgery is not the same thing as a gender assignment; Necessary medical procedures, including endocrinological treatment of a child with salt-wasting congenital hyperplasia, or surgery to provide a urinary drainage opening when a child is born without one, should be performed, but normalizing genital surgery should not be performed until the child can make his or her own informed decision. Once informed, the patient should be connected to a patient-centered surgeon. 74

7 7 INTERSEX RIGHTS AND REPRODUCTIVE JUSTICE / IF/WHEN/HOW ISSUE BRIEF Lessons from Colombia: In 1999, the Constitutional Court of Colombia set a new standard of informed consent for genital surgery that did not allow parents to consent for a child over the age of five. 75 For children under the age of five, the Court restricted the authority of parents to authorize genital surgeries for intersex children in order to ensure that parents put the best interest of their children ahead of their own discomforts and concerns about sexual ambiguity. 76 The Court held that the surgery could constitute a violation of the child s autonomy and bodily integrity, and that in most cases, the genital surgeries were not medically necessary or effective, nor was urgent action required. 77 The Court s decision created a new category of consent, requiring that parents receive accurate, comprehensive information that includes all risks and information about alternative forms of treatments not requiring early surgery. 78 Additionally, parents must give consent in written form over a period of time on more than one occasion in order to ensure that the parents have had sufficient time to understand the child s condition and give full consideration to the consequences of the decisions made for the child. 79 The decision also indicated that parents would not be able to consent to the surgery after a child has reached five years, given that the child has already developed a gender identity by that age. 80 LAW & POLICY interact Advocates for Intersex Youth has worked with transgender rights groups to end discriminatory bathroom bills. 81 In February of 2016 interact sent a direct response to South Dakota s governor regarding bathroom use for transgender students. If signed into law, the bill would have required transgender students to use separate restrooms and locker rooms. 82 On March 1, 2016, the governor of South Dakota vetoed the bill. 83 In March 2016, interact sent an published a response opposing North Carolina s HB2. 84 The North Carolina bill would have ended protections for those in the LGBTQI community; some intersex people would no longer have been able to legally enter a public restroom in the state of North Carolina. In its response, interact called for an end to all efforts to force transgender and gender-variant individuals into segregated facilities without their consent as a result of a sex classification on a government-issued document. 85 Although a version of the bill was signed into law in 2016, the North Carolina legislature repealed it in 2017 due to the bill s devastating economic effects on the state. 86 However, the new policy prevents cities from protecting LGBTQ residents. 87 After working with interact in 2015, the NYC Commission on Human Rights issued new guidance regarding intersex rights, stating that discrimination against someone for being intersex is gender discrimination and is prohibited by New York City human rights law. 88 This is the first explicit recognition that intersex discrimination is an unlawful activity. interact has touted this statement as a victory for all intersex people. In April 2006, a sixteen month-old intersex infant (M.C.) underwent sex assignment surgery while in legal custody of the South Carolina Department of Social Services. 89 During this time, the South Carolina Department of Social Services was legally authorized to make medical decisions for M.C. because he was a ward of the state. 90 Doctors recommended and performed the surgery despite knowledge that the surgery was irreversible, painful, and wholly unnecessary. Approximately four months after the surgery, a married couple gained custody of M.C. and adopted him. Although the doctors responsible for performing the surgery assigned female sex to M.C. and removed a healthy phallus in order to bring his body into compliance with that assignment, M.C. has since clearly identified himself as a boy. 91 Because of the surgery, he faces decreased or destroyed sexual and reproductive function. 92 In 2013, M.C. s parents filed a 42 U.S.C claim against the South Carolina Department of Social Services, Greenville Hospital System, Medical University of South Carolina, and individual employees for unnecessarily and irreversibly removing genital tissue from an intersex infant. 93 M.C. was represented by interact Advocates for Intersex Youth, the Southern Poverty Law Center, and two private law firms. 94 The defendants filed a motion to dismiss on grounds of qualified immunity, however the trial court denied these motions. 95 On appeal, the U.S. Court of Appeals for the Fourth Circuit reversed the district court s ruling. 96 The Fourth Circuit held that to withstand dismissals based on qualified immunity, M.C. was required to show the unlawfulness of the surgery was apparent and the defendants had fair notice the surgery violated M.C. s rights. 97

8 8 INTERSEX RIGHTS AND REPRODUCTIVE JUSTICE / IF/WHEN/HOW ISSUE BRIEF The court reasoned the defendants did not have fair warning, and as a result, M.C. did not have a remedy under federal law INTERACT ADVOCATES FOR INTERSEX YOUTH, MEDIA GUIDE 2, (last visited July 27, 2017). 2 See Frequently Asked Questions: How Common is Intersex?, INTERSEX SOC Y OF N. AM., (last visited July 27, 2017) [hereinafter How common is Intersex?]; see also Cary Gabriel Costello, How Common is Intersex Status?, INTERSEX ROADSHOW (Mar. 13, 2012), (defining hypospadias and micropenis as intersex conditions, estimating 1 in every 142 births is intersex). 3 Intersex 101: Everything You Want to Know!, INTERACT ADVOCATES FOR INTERSEX YOUTH, (last visited July 27, 2017) [hereinafter Intersex 101]. 4 Frequently Asked Questions: Intersex Conditions, INTERSEX SOC Y OF N. AM., (last visited July 27, 2017). 5 Intersex 101, supra note 3. 6 Anne Tamar-Mattis, Exceptions to the Rule: Curing the Law s Failure to Protect Intersex Infants, 21 BERKELEY J. GENDER L. & JUST. 65 (2006), Infants.pdf. 7 What is Intersex, INTERSEX SOC Y OF N. AM., (last visited July 27, 2017). 8 HIDA, How Common is Intersex: An Explanation of the Stats., OII-USA(Apr.1, 2015), 9 How Common is Intersex: An Explanation of the Stats., OII-USA(Apr.1, 2015), 10 Tamar-Mattis, supra note 6, at at at at at I Want to be Like Nature Made Me: Medically Unnecessary Surgeries on Intersex Children in the US, HUM. RTS. WATCH (July 25, 2017), [hereinafter I Want to be Like Nature Made Me] Tamar-Mattis, supra note 6, at I Want to be Like Nature Made Me, supra note Anne Tamar-Mattis, Medical Decision Making and the Child with a DSD, ENDOCRINE TODAY (Nov. 10, 2008), [hereinafter ENDOCRINE TODAY]; HUM. RTS. WATCH & INTERACT ADVOCATES FOR INTERSEX YOUTH, I WANT TO BE LIKE NATURE MADE ME: MEDICALLY UNNECESSARY SURGERIES ON INTERSEX CHILDREN IN THE US 89 (2017), [hereinafter HUM. RTS. WATCH & INTERACT ADVOCATES FOR INTERSEX YOUTH]. 23 I Want to be Like Nature Made Me, supra note Tamar-Mattis, supra note 6 at at ENDOCRINE TODAY, supra note Alice Dreger & Ellen K. Feder, Bad Vibrations, BIOETHICS F. (June 16, 2010), [hereinafter Bad Vibrations]. 30 HUM. RTS. WATCH & INTERACT ADVOCATES FOR INTERSEX YOUTH, supra note 22 at 6, at Bad Vibrations, supra note Jennifer Yang et al., Nerve Sparing Ventral Clitoroplasty: Analysis of Clitoral Sensitivity and Viability, J. OF UROLOGY (Oct. 2007). 34 Bad Vibrations, supra note HUM. RTS. WATCH & INTERACT ADVOCATES FOR INTERSEX YOUTH, supra note 22 at

9 9 INTERSEX RIGHTS AND REPRODUCTIVE JUSTICE / IF/WHEN/HOW ISSUE BRIEF 37 Dexamethasone, DRUGS.COM, (last visited Aug. 1, 2017). 38 Catherine Elton, A Prenatal Treatment Raises Questions of Medical Ethics, TIME (June 18, 2010), 39 Congenital Adrenal Hyperplasia, U.S. NAT L LIBR. OF MED. (May 8, 2012), Elton, supra note What s the History Behind the Intersex Rights Movement, INTERSEX SOC Y OF N. AM., (last visited July 30, 2017) [hereinafter What s the History Behind the Intersex Rights Movement?]. 46 Tamar-Mattis, supra note 6 at What s the History Behind the Intersex Rights Movement?, supra note HUM. RTS. WATCH & INTERACT ADVOCATES FOR INTERSEX YOUTH, supra note 22 at INTERSEX SOC Y OF N. AM., (last visited July 30, 2017). 51 HUM. RTS. WATCH & INTERACT ADVOCATES FOR INTERSEX YOUTH, supra note 22 at at The Yogyakarta Principles: Principles on The Application of Int l Human Rights Law in Relation to Sexual Orientation and Gender Identity, (Mar. 2007), 56 at princ. 18(B). 57 at princ. 18(C). 58 HUM. RTS. WATCH & INTERACT ADVOCATES FOR INTERSEX YOUTH, supra note 22 at at at HUM. RTS. WATCH & INTERACT ADVOCATES FOR INTERSEX YOUTH, supra note 22 at at ENDOCRINE TODAY, supra note See generally Peter A. Lee et al., Consensus Statement on Management of Intersex Disorders, 1 J. AM. ACAD. PEDIATRICS (Aug. 1, 2006), What does ISNA Recommend for Children with Intersex? INTERSEX SOC Y N. AM., (last visited Aug. 1, 2017) Patricia L. Martin, Moving Towards an International Standard in Informed Consent, 9 DUKE J. GENDER L. & POL Y 135, 162, 167 (2002), 76 Julie A. Greenberg & Cheryl Chase, Background of Colombia Decisions, INTERSEX SOC Y N. AM. (1999), Intersex Legislation & Regulation, INTERACT ADVOCATES FOR INTERSEX YOUTH, (last visited Aug. 1, 2017). 82 VICTORY! Protect Students from Anti-Transgender Bill, ACLU ACTION (Mar. 3, 2017),

10 10 INTERSEX RIGHTS AND REPRODUCTIVE JUSTICE / IF/WHEN/HOW ISSUE BRIEF 83 Intersex Legislation & Regulation, supra note Mark Joseph Stern, The HB2 Repeal Bill is an Unmitigated Disaster for LGBTQ Rights and North Carolina, SLATE: OUTWARD (Mar. 20, 2017, 12:25 PM), Intersex Legislation & Regulation, supra note M.C. v. Amrhein, No , 2015 U.S. App. LEXIS 1116, at 3 (4th Cir. Jan. 26, 2015) at at Groundbreaking SPLC lawsuit accuses South Carolina, Doctors and Hospitals of Unnecessary Surgery on Infant, S. POVERTY L. CTR. (May 13, 2013), 94 M.C. v. Amrhein, supra note at at at 13.