A human rights investigation into the medical “normalization” of intersex people
Intersex people are often asked to justify why intersex newborns should not be “normalised” – our genitals surgically made to resemble those of other people.
This report, the result of a series of hearings by the San Francisco Human Rights Commission, gives some very good testimony against non-consensual genital surgery on infants, from intersex people it has been done to.
It should be noted that such surgery and the often associated hormone treatment does not make us any less intersex – it does make our genitals look and function differently from how they were at birth, and often at a truly terrible cost to us, our lives, our families and our careers.
The Human Rights Commission, having conducted a public hearing on May 27, 2004 on the question of the medical “normalization” of intersex people and the social, legal, and ethical aspects of intersex issues, and having considered verbal and written testimony, hereby finds that:
1. Infant genital surgeries and sex hormone treatments that are not performed for the treatment of physical illness, such as improving urinary tract or metabolic functioning, and have not been shown to alleviate pain or illness (hereafter referred to as “normalizing” interventions) are unnecessary and are not medical or social emergencies.
2. “Normalizing” interventions done without the patient’s informed consent are inherent human rights abuses.
3. “Normalizing” interventions deprive intersex people of the opportunity to express their own identity and to experience their own intact physiology.
4. It is unethical to disregard a child’s intrinsic human rights to privacy, dignity, autonomy, and physical integrity by altering genitals through irreversible surgeries for purely psychosocial and aesthetic rationales. It is wrong to deprive a person of the right to determine their sexual experience and identity.
5. It is as a violation of a child’s human rights to put a child’s body on unnecessary or sensationalistic medical display since there are adequate photographic tools available for teaching purposes.
6. It is ethically wrong to treat people differently or unfairly because they are perceived by others to be “monsters” or “oddities.”
7. Many intersex people experience “normalizing” interventions as a violation of bodily integrity.
8. Patients often experience “normalizing” interventions, secrecy, and medical display (i.e. being touched on the genitals or displaying the patient’s genitals to others) as sexual abuse and may also experience post-traumatic stress symptoms as a result.
9. Feminizing genitoplasties performed on intersex people can produce physical and emotional outcomes similar to those of female circumcision or Female Genital Mutilation (FGM).
10. “Normalizing” interventions performed to alleviate a parent’s social discomfort about their child’s intersex anatomy violate the patient’s human rights.
11. “Normalizing” medical interventions performed on an intersex child to address the discomfort of doctors, relatives, and anyone other than the consenting patient is a violation of the child’s human rights.
12. Another governmental entity, the Constitutional Court of the Country of Colombia, recognized the need to protect people with intersex anatomies from “normalizing” interventions, by “significantly limiting the ability of doctors and parents to surgically alter the genitalia of intersex children because “normalizing” interventions have no evidential basis as being “necessary, safe, or effective” and there is a lack of evidence demonstrating that an early decision on “normalizing” interventions is urgent.
13. Another governmental entity, the Constitutional Court of the Country of Colombia found that the State assumes that parents will act in the best interests of their children. However, the court found that parents are more likely to make decisions based upon their own fears and concerns rather than what is ultimately best for the child in the case of intersex infants, and that this is especially true when par- ents are being pressured by others to choose quickly.
14. “Normalizing” interventions violate most medical standards of informed consent including the standards put forth by the United Nations’ Commission on Human Rights, the American Convention on Human Rights, and the American Pediatric Association’s standards.
15. The American Academy of Pediatrics’ policy on informed consent includes specifications on best practices concerning a child’s right to assent to (or refuse) medical treatments. A patient’s input is particularly crucial when the proposed intervention is not essential to their welfare and/or can be deferred without substantial risk.
16. Parents have the right to provide informed consent for medical treatments that are necessary for the physical health of an intersex child, and not for “normalizing” procedures.
17. Many parents choose “normalizing” interventions for their intersex children based on misinformation and/or coercion from the doctors. Because of this, some parents’ consent is not truly informed consent.
18. Deceiving patients makes informed consent impossible, and surgeries and treatments performed under deceptive circumstances are therefore performed without patient approval.
19. Without the patient’s consent, parents sometimes choose “normalizing” interven- tions for adolescents who had not been surgically or hormonally “normalized” as infants or children.
20. No evidence indicates that intersex children benefit from “normalizing” interventions. Existing data suggest that the long-term consequences of “normalizing” genital surgeries are quite negative. Many intersex adults report dissatisfaction with the sex hormone treatments and/or the surgeries they were subjected to as infants and children. Reported dissatisfaction includes physical appearance, scarring, pain, and diminished or absent sexual function, as well as psychological problems such as depression, poor body image, dissociation, sexual dysfunction, social anxiety, substance abuse, suicidal ideation, shame, self-loathing, difficulty with trust and intimacy, and post-traumatic stress disorder.
21. There is little positive follow-up data from patients who have been subjected to clitorectomies or clitoroplasties during the last ten years. Specifically, there are no data that reflect patient satisfaction with the surgical outcome, suggest that the reconstructed genitals are structurally and functionally “normal,” or indicate quality of life has been improved.
22. The definition of a “successful outcome” differs greatly between medical providers and patients. Questions in follow-up studies tend to focus on heterosexual sexual behavior as being the standard for success, as opposed to fertility or pleasure. It is more common to ask a patient if she or he is married than to ask if that patient has a pleasing sexual life, is able to procreate, or has the ability to achieve orgasm.
23. Most intersex people have not been asked to participate in follow-up studies. Such participation would require a level of disclosure by doctors that many intersex people have been denied, because traditional approaches encourage concealment of intersex status, and a person may not know they have an intersex anatomy having been “protected from” this information by doctors.
24. Doctors who claim positive surgical outcomes have no data to support this. The emotional impact of “normalizing” medical interventions has not been studied by clinicians that assign sex and gender to intersex people.
25. Most intersex people who have been subjected to nonconsensual surgical and/or sex hormone treatments and who have been asked state that they would have preferred to have their bodies left intact. Most intersex people who have not had surgery are grateful and do not wish to undergo medical procedures to “normalize” their genitals.
26. There are few long-term follow-up studies on “normalizing” genital surgery performed on intersex children. Most follow-up studies focus on acceptance of gender assignment and have not adequately addressed quality of life issues for intersex adults.
27. Research is not a suitable substitute for immediately ending “normalizing” interventions.
28. There is no medical consensus regarding whether “normalizing” genital surgeries are advisable or beneficial.
29. There is great inconsistency among doctors and medical associations regarding the medical treatment of intersex children. There is no written standard of care, and decisions to “normalize” genitals are based upon subjective standards and cultural prejudices.
30. The American Medical Association, American Association of Clinical Endocrinologists, and the American Urological Association no longer have official policies on the management of intersexuality, and state that they defer to the “decisions of individual doctors and membership associations.”
31. The American Association of Pediatrics, American Medical Association, and American Urological Association have called having ambiguous genitals a “social emergency” that necessitates an immediate medical response.
32. The American Academy of Pediatrics (AAP) has concluded that treating “ambiguous” or “abnormal” genitalia requires urgent medical attention, and recommends that “normalizing” interventions happen very early in life – between the ages of six months and eighteen months.
33. All surgery carries the risk of death, and that risk increases in younger patients. All surgery carries the risk of infection; healthy intersex children have had their good health impaired or permanently compromised as a result of “normalizing” interventions.
34. Most infant genital surgeries are performed with a treatment goal of “normalizing” the visual appearance of an intersex child. The subjective determination of what appears “normal” is left to individual physicians.
35. Genital surgeries performed on intersex infants and children are essentially irreversible.
36. Performing infant genital surgery for “normalizing” purposes can destroy or limit reproductive capacity, eliminate options for expression of gender and sexual identity, and diminish or destroy sexual function and pleasure. Genital surgery also can lead to long-term physical pain.
37. Clitoral surgery can have negative outcomes: it risks a reduction or loss of sensation in the genital region; it may create painful sensations upon arousal or erection; it may not be consistent with the child’s gender identity [a person’s own sense of self in terms of being masculine and/or feminine].
38. Vaginoplasty can have negative outcomes: it can cause infertility; vaginal dilation is often painful and humiliating; the constructed vagina can smell like bowel; it can necessitate constant use of sanitary napkins; it frequently requires repeated surgical revisions; and it is usually created or deepened for the expressed goal of accommodating a penis, rather than for the satisfaction of the patients; vaginal dilation is painful and can be experienced as sexual abuse; there is no medical need for a preadolescent girl to have a vagina.
39. Hypospadias “repair” (surgically moving the urinary opening to the end of the penile shaft) often involves many, often painful, surgeries. As the body tissue used to reconstruct the urinary tract lacks the beneficial properties of real urinary tract tissue, it can require ongoing medical intervention.
40. Adult men with small phalluses can and do learn to be sexual in ways that satisfy both themselves and their partners. Most adult men with small penises would not want to have them removed and would prefer to participate in such decisions.
41. Adult women with large clitorises can and do learn to be sexual in ways that satisfy both themselves and their partners. Most adult women with large clitorises would not want to have them removed or resized, and would prefer to participate in such decisions.
42. Adults with atypical genitalia usually would not choose the procedures to which intersex infants and children are subjected, such as the removal of a small penis or the removal, reduction, or recession of a large clitoris.
43. Ambiguous genitalia can be a sign of metabolic concerns that may need urgent treatment; however, ambiguous genitals themselves do not need urgent surgical or hormonal treatment to “normalize” or “correct” their appearance.
44. Most medical interventions performed on children are available to young adults when they are able to give consent. It is easier to operate on larger anatomy and results are more likely to be seen by the patient as positive. Early childhood surgeries often necessitate revisions to accommodate body growth. Increased frequency of surgery also increases surgical risk.
45. Parents often are not advised that they will have to dilate their child’s newly constructed vagina or that the child may need multiple surgeries. Medical providers often tell parents that there is something wrong with the child. Parents of intersex children report feeling shame, fear, horror, humiliation, regrets, and ongoing doubt about the choices they may have made for their children.
46. Because genital surgery affects one of the most sensitive parts of the body, it can hinder sexual response. Since these “normalizing” procedures often are experienced as a violation, they also can damage a person’s capacity for physical and emotional intimacy.
47. Historically, preservation of sexual pleasure and orgasmic capacity has not been prioritized as a surgical goal, or even taken into consideration. In recent years, clinicians have recognized the importance of preserving sensation — yet pre- serving sensation is not the same as preserving pleasure. Many intersex people report sensations of pain rather than pleasure. In addition, it is virtually impossible to cut tissue without causing nerve damage. This is particularly true for tissue that is as densely innervated as the genital and pelvic area.
48. Intersex adults report undergoing sex hormone treatments even when there is evidence that such treatments may harm their general health. Future negative effects of sex hormone treatments may not be disclosed to intersex individuals before the treatment is started, and the negative effects of those treatments are not adequately medically addressed.
49. The preponderance of evidence suggests that gender identity cannot be surgically assigned. The outcomes of such surgical assignments can be devastating to the patient, and to their family.
50. Most intersex children can live happy and healthy lives without surgical intervention.
51. Rationales for “normalizing” medical interventions are based upon social mores and norms and are not evidence-based.
52. Current treatment protocols are homophobic in that they use heterosexuality as the measure of a successful gender assignment. Homosexuality is considered an undesired or unsuccessful outcome.
53. Parents often are made to believe that their intersex children will be homosexual and/or suicidal if they do not undergo “normalizing” genital surgery.
54. Prejudice against people with nonstandard genitals is culturally determined, and this negative bias does not exist in every culture.
55. Intersex people are subjected to “normalizing” medical interventions that are intended to reinforce gender assignment.
56. “Normalizing” interventions cannot create or change a person’s sex, gender, sex identity, or gender identity.
57. Gender identity is not intrinsically tied to physiology in a predictable way. The most accurate way to identify a child’s gender is to allow them to assert it.
58. Although many intersex people identify as either male or female, some do not.
59. Sometimes patients are assigned a gender that is incongruent with their own gender identity. When that assignment has been reinforced surgically and/or hormonally, transitioning to an appropriate gender is problematic. It is essentially impossible to completely reverse “normalizing” procedures. Intersex people who were assigned a sex and gender that is wrong for them face the additional hardship of transitioning to their actual sex or gender identity.
60. Intersex people’s legal identities are compromised when their gender assignment doesn’t match their chromosomes. This could cause complications for intersex people who are legally married or desire to marry. It is also problematic when legal identification appears inconsistent with gender expression.
61. Parents often are led to believe that intersex is unique and rare. This becomes a barrier to acquiring vital information and support from other parents that will help them care for their intersex children.
62. Approximately 1 in 2000 children is born with so-called ambiguous genitals. Additionally, some people are discovered to have some type of intersex condition later in life.
63. In the United States, approximately five “normalizing” surgeries are performed on infants each day.
64. Due to their experiences, many intersex people fear medical providers and clinical settings and are therefore reluctant to seek routine, necessary, or emergency medical attention.
65. The practice of utilizing “normalizing” interventions and concealment fosters shame and secrecy. Clinicians often do not tell intersex children anything about the intersex aspects of their bodies or about the surgeries and/or sex hormone treatments to which they were subjected, even after the patient becomes an adult. Often, intersex people and adults are told lies to cover up the true nature of their bodies and medical interventions, and this system of deception is recommended to the family members of the intersex person.
66. While access to accurate information and peer support helps people accept intersexuality as normal – secrecy, lies, and withholding patient information can produce a sense of “freakishness” about intersexuality. Intersex children often discover partial truths about their bodies and medical histories, and they do not always get this information from appropriate sources in appropriate ways. Further, they are not routinely offered professional therapeutic support along with this information.
67. Biology curricula reinforce theories of human sexual dimorphism. Students are taught that human bodies always fall into one of two opposite categories: male or female. However, the definitions of male and female anatomies do not include intersex anatomies.
68. Medical and mental health care providers are not being adequately trained in human sexuality. This inhibits most health care providers from understanding their patients’ particular needs and offering them the most appropriate care.
69. There are insufficient numbers of medical and mental health providers who are adequately trained in providing appropriate intersex care and treatment. Currently, there are not enough medical and mental health professionals trained to help manage intersex births.
70. Some teaching institutions recently have begun to create appropriate curricula to teach comprehensive intersex studies to medical and mental health providers.
71. Because of increasing controversy regarding “normalizing” interventions, concerned clinicians are questioning the traditional “concealment model” of intersex treatment. Some are working to advocate for a “patient centered” treatment model.
72. Before 1993, no intersex people were on record acknowledging their experience with “normalizing” practices. Because of the growing patient advocacy movement, some intersex people are now able to speak publicly about these issues.
73. Peer support and advocacy groups like the Intersex Society of North America (ISNA), Bodies Like Ours, and Intersex Initiative are working to improve the lives of intersex people.
74. The Internet is one of the primary vehicles intersex people use to gain information about their conditions and find community support. Low-income people, including many intersex people of color, are less likely to have access to email, the Internet, or other technological resources.
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