Attributed to more than 70 atypical chromosomal & hormonal conditions APA defines intersex as the atypical development of physical sex characteristics including Ambiguous external genitalia Incomplete or unusual development of reproductive organs Discrepancy between the external genitalia and internal reproductive organs Abnormality of sex-related chromosomesAmerican Psychological Association (2012). Answers to questions about individuals with intersex conditions. Retrieved from http://www.apa.org/topics/sexuality/intersex.aspx
Condition was historically referred to as ‘hermaphrodite’ and continues to be used by some medical personnel that perpetuates stigmatization and misconception. The term implies a person is both fully male & fully female which is not physiologically possible. Difficult condition to define due to being socially constructed. Intersex reflects variation in sexual and reproductive anatomy that does not adhere to typical male or female development. “Masculinity” and “femininity” more shaped by expectations about abilities and perceptual bias rather than influenced by hormone levels in the brain, and are not stable constructs over time and across culturesJordan-Young, R. (2010). Brain Storm: The flaws in the science of Sex Differences. Harvard University Press. Cambridge, MAIntersex Society of North America (2008). Frequently asked questions. Retrieved from http://www.isna.org/faq/
New Guinea: Kwolu-Aatmwol Navajo Culture: Berdache Thought to have spiritual Socially accepted abilities Societal prestige; considered Turkey holy & sacred Demand social recognition India: Hijra Africa: Serrer Low social status Killed after birth Excluded from society If survived, they are subject to Siberia: Shamans ridicule & mockery High spiritual power Not permitted to marry or High social status & great adopt children influence Barely tolerated in society Lang, C. & Kuhnle, U. (2008). Intersexuality and alternative gender categories in non-western cultures. Hormone Research, 69, 240-250. doi: 10.11591000113025
1 in 2000 babies born possess ambiguous genitalia 1-4% of the population are impacted by ambiguous genitalia 0.1% of the population indicate that their lives are strongly affected by intersex condition May be underreported due to intersex conditions that are not identified until later in lifeLev, A. (2004). Transgender Emergence: Therapeutic Guidelines for Working With Gender-Variant People and Their Families. New York, NY: The Hawthorn Press, Inc.
Ambiguous genitalia at Misplaced urethra birth opening of the penis Micropenis Electrolyte abnormalities Enlarged clitoris Delayed puberty Partial labial fusion Absent puberty Undescended testes Unexpected pubertal Masses on the changes labia/groin Intersex Society of North America (2008). Frequently asked questions. Retrieved from http://www.isna.org/faq/
Congenital Adrenal Hyperplasia 5-alpha reductase deficiency Partial/complete androgen insensitivity Penile agenesis Klinefelter Syndrome Turner Syndrome Swyer Syndrome Progestin-Induced SyndromeIntersex Society of North America (2008). Frequently asked questions. Retrieved from http://www.isna.org/faq/
Condition is usually recognized at birth Intersex conditions associated with complete androgen insensitivity, Klinefelter Syndrome, & Turner Syndrome may not be recognized until adolescence as evidenced by delayed or absent pubertal changes. Late discovery is correlated with reduced or complete infertility & increased emotional distress.American Psychological Association (2012). Answers to questions about individuals with intersex conditions. Retrieved from http://www.apa.org/topics/sexuality/intersex.aspx
Havelock Ellis (1945) With early intervention, gender can be nurtured John Money (1950s), Theory of Gender Infant is psychosexually neutral at birth & can develop as either gender, regardless of biological sex, as long as child rearing is consistent with sex assignment Sex assignment and surgical intervention will avert psychological disturbance associated with intersex conditionFeder, E. (2011). Tilting the ethical lens: Shame, disgust, and the body in question. Hypathia, 26, 632-650.
Considered a “medical & psychosocial emergency” although nearly all surgeries are performed for cosmetic purposes. Immediate sex assignment & surgery to create genitalia that are consistent with one another. Surgical protocol based on the premise that infants are psychosexually neutral at birth & healthy gender identity is dependent on the appearance of the genitals Surgical protocol has been the prominent treatment for the past 30 years.Feder, E. (2011). Tilting the ethical lens: Shame, disgust, and the body in question. Hypathia, 26, 632-650.
Physician deception endorsed by medical textbooks Providers encouraged to withhold information and medical history when requested Focus of surgical treatment has been on alleviating parental distress Parents counseled to maintain secrecy and encourage that secrecy is maintained by child into adulthoodFeder, E. (2011). Tilting the ethical lens: Shame, disgust, and the body in question. Hypathia, 26, 632-650.
Physicians to assume moral responsibility to surgically correct ambiguous genitalia in an effort to preclude social ostracism & suffering. Intersex Society of North America argue that intersex genital surgeries constitute a human rights issue.Moreland, I. (2012). The injured world: Intersex and the phenomenology of feeling. A Journal of Feminist Cultural Studies, 23, 20-41.
Is not curative and does not improve functioning Performed without properly informed consent Patients are too young to provide informed consent Parents not informed of the associated risks Risk of injury & damage to sexual functioning Trading function for appearance as reinforced by cultural norms Morally injurious Suggests that the child is not acceptable as he/she is Potential for incorrect sexual assignmentLev, A. (2004). Transgender Emergence: Therapeutic Guidelines for Working With Gender-Variant People and Their Families. New York, NY: The Hawthorn Press, Inc.Moreland, I. (2012). The injured world: Intersex and the phenomenology of feeling. A Journal of Feminist Cultural Studies, 23, 20-41.
Need for ongoing, Infertility invasive treatment & Trauma repeated surgeries Mistrust in adults & Scarring medical professionals; Genital pain subsequent avoidance of Nerve damage & loss of helping professionals sensation Psychosocial difficulties Impairment in sexual Psychological distress functioning Murray, S. (2009). Within or beyond the binary or boundary?: Intersex infants and parental decisions. Australian Feminist Studies, 24, 265-274. doi: 10.1080108164640902852464
Considerations when determining sex assignment: 1. Preservation of fertility 2. Preservation of genital sensation 3. Maximizing later satisfaction with sex assignmentAmerican Psychological Association (2012). Answers to questions about individuals with intersex conditions. Retrieved from http://www.apa.org/topics/sexuality/intersex.aspx
Disorientation and confusion Shock, grief, anger, and shame Looking to doctors for answers (as “all knowing”) with little communication Doctors frequently change their minds about the “proper sex,” and different doctors will make different recommendations Parents trust medical experts and believe that not undergoing surgery will add to the child’s gender identity confusion
No language for what to call the baby Baby seems “sub-human,” as “something” until there is a sex to “humanize” it Not sure whether to focus on genitals, chromosomes, or internal sex organs when deciding sex Parents often are not aware of any choice or alternatives other than sex assignment procedures, they look to the doctors for guidanceGough, B., Weyman, N., Alderson, J., Butler, G., & Stoner, M. (2008). They did not have a word: The parental quest to locate a true sex for their intersex children. Psychology & Health, 23(4), 493-507. doi:10.1080/14768320601176170Zeiler, K. & Wickström, 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, vol. 10(3): 359– 377.1464– 7001 DOI: 10.1177/1464700109343258
The development of genitals and sex characteristics change over time and with puberty Doctors may change recommendations as an intersex child develops and hormones change Some children/adolescents may experience incongruence between their sense of gender identity and their sex following sex assignment surgeries and procedures Female becomes the “default” gender when it is determined that male genitals won’t meet strict norms for appearance and function, despite chromosomes and hormones that indicate male dominance
Childhood was experienced as difficult for intersex individuals who both had surgery and did not have surgery: secrecy and shame made it more difficult regardless of genitals and sex characteristics Most intersex participants indicated that they were not supportive of surgery Surgery reinforces stigma through degradation and shame Surgery without the consent of the intersex individual can often lead to sex assignment that is not congruent with the individual’s internal identityGough, B., Weyman, N., Alderson, J., Butler, G., & Stoner, M. (2008). They did not have a word: The parental quest to locate a true sex for their intersex children. Psychology & Health, 23(4), 493-507. doi:10.1080/14768320601176170MacKenzie, D., Huntington, A., & Gilmour, J. A. (2009). The experiences of people with an intersex condition: A journey from silence to voice. Journal Of Clinical Nursing, 18(12), 1775-1783. doi:10.1111/j.1365-2702.2008.02710.x
Guth et al. (2006) study with intersex women who had undergone genital surgery as children reported the following: Lack of understanding of the condition as an adult Discomfort & embarrassment with continued medical treatment Inability to communicate with others regarding their condition Maintenance of confused concepts from childhood Concerns regarding fertility and masculine character developmentOverall, women were satisfied with the outcome but participants varied with regard to gender identity and gender role.Guth, L., Witchel, R., & Lee, P. (2006). Gender roles and self-concept of individuals who have congenital adrenal hyperplasia: A Qualitative Investigation. Journal of Gay & Lesbian Psychotherapy, 10 57-75. doi: 10.1300IJ236v10n02_04
Intersex individuals report finding acceptance after they were able to break the silence Being connected with other intersex individuals made them feel empowered and normal Forming an identity outside of the gender binary helps with acceptance There are more intersex children born than those born with Down’s Syndrome, yet less awareness… Increased awareness can lead to decreased shame and secrecy Parents believe that if the silence and shame were broken, then people could talk more freely about different possibilities and options for intersex children
Obtain ongoing training and education regarding intersex conditions & implications. Recognize one’s own attitudes about intersex conditions & how those may influence treatment. Assist the client in exploration of gender identity & sexuality with a focus on the societal influence. Strive to understand the challenges experienced by intersex individuals & their families. Recognize the influence of social stigma & how it inhibits disclosures & willingness to seek treatment. Connect intersex individuals and families to community based resources and educational materials regarding the intersex condition & treatment options. Encourage intersex individuals and families to advocate for themselves with regard to medical professionals. Be an advocate for the rights of children with intersex conditions.Guth, L., Witchel, R., & Lee, P. (2006). Gender roles and self-concept of individuals who have congenital adrenal hyperplasia: A Qualitative Investigation. Journal of Gay & Lesbian Psychotherapy, 10 57-75. doi: 10.1300IJ236v10n02_04