Nonconsensual, Medically Unnecessary Surgeries on Intersex Children

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Intersex children are born with sexual characteristics that do not adhere strictly to the gender binary classifications of male or female. Instead of questioning the binary gender as an adequate model for classifying sex, medical professionals pathologize intersex as a disorder to be treated through surgical interventions. Intersex children are forced to undergo nonconsensual, medically unnecessary genital-normalizing surgeries to modify their genitals to look more typical of the sex of their rearing.

Intersex activists argue that genital-normalizing surgery performed on intersex children without their formal consent is a violation of human rights, [1] and should be delayed until a child is old enough to make their own decision. [2]

Intersex Children

Intersex children are born with biological sexual characteristics (including sexual gonads, genitals, and chromosomes) that do not conform to socially accepted notions of a male or female body.[3] The degree of sexual variation amongst intersex children ranges from characteristics that cause infertility to characteristics that affect appearance.[4] Most intersex children are not inhibited by their sexual characteristics, and are able to function well without medical intervention.[5]

Estimates of the prevalence of intersex children ranges from 0.5%-4%. [3][4] The most thoroughly researched estimate is 1.7% of the world's population, making intersex people as common as red haired people. [6] Despite the high prevalence of intersex people, public awareness and acceptance of intersex issues remains low, leaving intersex children and their families in isolation, shame, confusion, and uncertainty. [4]

Medicalization of Intersex through Western Medicine's Gender Norms

Medicalization is when human conditions are treated as medical problems that need to be studied, diagnosed, treated, and prevented. Although medicalization is useful in indentifying diseases to be treated in order to improve the quality of life, it can also be misused as a biopower to control populations.

The western society's medical definition of sex as binary pathologizes children whose natural sexual characteristics are neither strictly male or female.[7] In the medical community, children born intersex are diagnosed with a 'disorder of sex development' (DSD).[4] Classifying natural, non-life-threatening sexual ambiguity as a disorder dehumanizes and discriminates intersex children by labelling their natural genitals as atypical, inadequate, and malformed.[4] The biological diagnosis of intersex as a medical condition gives medical professionals the power to procure surgical interventions as viable solutions to correct this perceived sexual anomaly.[4]

Genital-normalizing Surgery

Medical professionals may frame a child's sexual ambiguity as a crisis that needs to be resolved immediately through genital-normalizing surgery.[4] These surgical procedures are recommended to be done as early as 2 months old, and often require multiple follow-up operations in their adolescence.[4]

Rationale for the need for surgery is debatable. For example, medical professionals may recommend surgery to remove gonads that may be a potential cancer risk. However, the Australian Senate Inquiry Report found the risk of cancer in gonads of intersex children to be extremely low, and not sufficient reason for irreversible surgery without informed consent.[8]

The benefits of genital-normalizing surgery (such as relieving parental distress, and preventing UTI) lacks sufficient scientific support.[4][8][9] Instead, it had been found to cause serious, long-term physical effects such as permanent infertility, pain, impaired sexual sensation, incontinence, and permanent scarring.[4][3] The psychological implications are also serious, ranging from a sense of abnormality, a violation of bodily autonomy, a risk for mental health issues, and distrust in the parent-child relationship.[3][4][9]

Intersex Practices Around the World

In 2015, Malta was the first country to ban intersex surgery on children through the Gender Identity, Gender Expression, and Sex Characteristics Act.[3] As of 2018, countries around the world, including USA and Canada, still lack legislation to protect the rights of intersex children to their bodily autonomy.[10] The prevalence of genital-normalizing surgery is 1 and 2 per 1,000 newborns worldwide. [6]

Intersex Children's Rights

The social location an intersex child holds in age and gender increases their vulnerability in having their rights violated. Genital surgery performed before the intersex child is of age to provide fully-informed consent violates their rights to bodily autonomy.[3][8] Additionally, photos of intersex children's bodies has been found in research and education materials without their knowledge and consent, violating their rights to consent and privacy.[11]

Role of Parental Consent

As a child is too young to be able to give informed consent to surgery, the choice is often given to the parents.[12] Parents are likely to consent to genital-normalizing surgery as they trust in the expertise of medical professionals, and see their advice as optimal in leading to the child's best interests.[4][12] However, the information parents receive on intersex issues are limited, viable alternatives to surgical interventions are not offered or considered, restricting the choices available to parents.[4][8] Additionally, as intersex conditions are presented as an emergency, surgical interventions are seen as vital to sex assignment, and the complications and side-effects of surgery are often not taken into consideration.[4]

Although parents make decisions with the child's best interests in mind, their right to consent to irreversible surgery that impacts their child's fundamental rights is under debate.[12] Intersex activists and experts argue that it is inappropriate for a parent or guardian to make a decision on behalf of the intersex child for a procedure that has life-long impact.[5][12]

Non-disclosure

Nondisclosure Agreement (11367) - The Noun Project.svg

Some medical professionals still practice the paternalistic policy of withholding the diagnosis from intersex individuals.[13] As such, the child is not made aware of their intersex condition, or of the nature of their surgical procedures until they reached adolescence.[8] To prevent distress, intersex children are often lied to about their condition and the surgeries they undergo. [8] Often, the way in which an intersex individual finds out about their condition is distressing and traumatic.[8] Non-disclosure also keeps intersex a hidden condition, limits an individual from making informed medical decisions, and prevents access to peer supports.[13][11]

Some Resources to #endintersexsurgery

  • Intersex Justice Project - Advocates against medically unnecessary surgeries on intersex children. Individuals can participate in campaign against intersex surgery through social media, fundraising, creating art, and protesting.
  • InterACT - Provides helpful intersex inclusive sexual education resources and brochures
  • Pidgeon's Intersex Story - Pidgeon, an intersex activist, vlogs about her personal experience with intersex surgery.

References

  1. Ammaturo, F. R. (2016). "Intersexuality and the 'right to bodily integrity': Critical reflections on female genital cutting, circumcision, and intersex 'normalizing surgeries' in Europe". Social & Legal Studies. 25 (5): 591–610. doi:10.1177/0964663916636441 – via Sage.
  2. Diamond, M. & Garland, J. (2013). "Evidence regarding cosmetic and medically unnecessary surgery on infants". Journal of Pediatric Urology. 10: 2–7. doi:10.1016/j.jpurol.2013.10.021.CS1 maint: multiple names: authors list (link)
  3. 3.0 3.1 3.2 3.3 3.4 3.5 "Free & Equal Campaign Fact Sheet: Intersex" United Nations Office of the High Commissioner for Human Rights. 2015. Retrieved 19 July 2018.
  4. 4.00 4.01 4.02 4.03 4.04 4.05 4.06 4.07 4.08 4.09 4.10 4.11 4.12 4.13 Zeiler, K. & Wickstrom, A. (2009). "Why do 'we' perform surgery on newborn intersexed children? The phenomenology of the parental experience of having a child with intersex anatomies". Feminist Theory. 10 (3): 359–377. doi:10.1177/1464700109343258 – via Sage.CS1 maint: multiple names: authors list (link)
  5. 5.0 5.1 Huddleston, A. (2014). "Intersex children in foster care: Can the government elect sex assignment surgery?". Journal of Law and Policy. 22 (2): 957–1004. ISSN 1074-0635 – via Hein Online.
  6. 6.0 6.1 Hida (2015). "How common is intersex? An explanation of the stats". Intersex Campaign for Equality. Retrieved 2 August 2018.
  7. Horowicz, E. (2017). Intersex children and genital-normalising surgery. Archives of Disease in Childhood, 102(5)
  8. 8.0 8.1 8.2 8.3 8.4 8.5 8.6 Pagonis, P. (2017). "First do harm: How intersex kids are hurt by those who have taken the hippocratic oath". Griffith Journal of Law & Human Dignity. 5 (1): 40–51. ISSN 2203-3114.
  9. 9.0 9.1 Delisle, R. (2018). "Intersex: When a baby isn't quite boy or girl". Today's Parent. Retrieved 3 August 2018.
  10. "Intersex human rights". Wikipedia. Retrieved 3 August 2018.
  11. 11.0 11.1 "Fact Sheet: Intersex health". Rainbow Health Ontario. 2011. Retrieved 2 August 2018.
  12. 12.0 12.1 12.2 12.3 Uslan, S. S. (2010). "What parents don't know: Informed consent, marriage, and genital-normalizing surgery on intersex children". Indiana Law Journal. 85 (1): 301–324. ISSN 0019-6665 – via Hein Online.
  13. 13.0 13.1 Creighton, S. Minto, C. (2001). "Managing intersex: Most vaginal surgery in childhood should be deferred". The BMJ. 323(7324): 1264–1265 – via PMC.CS1 maint: multiple names: authors list (link)