Special Issues in Working with Intersex Families

1. Special Issues in Working with Intersex Families Tiffany Dzioba and Melissa Haupt

2. 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 chromosomes American Psychological Association (2012). Answers to questions about individuals with intersex conditions. Retrieved from http://www.apa.org/topics/sexuality/intersex.aspx What is intersex?

3. 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 cultures Jordan-Young, R. (2010). Brain Storm: The flaws in the science of Sex Differences. Harvard University Press. Cambridge, MA Intersex Society of North America (2008). Frequently asked questions. Retrieved from http://www.isna.org/faq/ Masculinity vs. femininity

4. Attitudes in non-western cultures • New Guinea: Kwolu-Aatmwol • Thought to have spiritual abilities • Turkey • Demand social recognition • Africa: Serrer • Killed after birth • If survived, they are subject to ridicule & mockery • Not permitted to marry or adopt children • Barely tolerated in society • Navajo Culture: Berdache • Socially accepted • Societal prestige; considered holy & sacred • India: Hijra • Low social status • Excluded from society • Siberia: Shamans • High spiritual power • High social status & great influence Lang, C. & Kuhnle, U. (2008). Intersexuality and alternative gender categories in non-western cultures. Hormone Research, 69, 240-250. doi: 10.11591000113025

5. 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 life Lev, A. (2004). Transgender Emergence: Therapeutic Guidelines for Working With Gender-Variant People and Their Families. New York, NY: The Hawthorn Press, Inc. How common are intersex conditions?

6. characteristics • Ambiguous genitalia at birth • Micropenis • Enlarged clitoris • Partial labial fusion • Undescended testes • Masses on the labia/groin • Misplaced urethra opening of the penis • Electrolyte abnormalities • Delayed puberty • Absent puberty • Unexpected pubertal changes Intersex Society of North America (2008). Frequently asked questions. Retrieved from http://www.isna.org/faq/

7. Congenital Adrenal Hyperplasia 5-alpha reductase deficiency Partial/complete androgen insensitivity Penile agenesis Klinefelter Syndrome Turner Syndrome Swyer Syndrome Progestin-Induced Syndrome Intersex Society of North America (2008). Frequently asked questions. Retrieved from http://www.isna.org/faq/ Examples of intersex conditions

8. 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 When is the condition identified?

9. 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 condition Feder, E. (2011). Tilting the ethical lens: Shame, disgust, and the body in question. Hypathia, 26, 632-650. Historical perspectives

10. 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. Traditional treatment of intersex conditions

11. 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 adulthood Feder, E. (2011). Tilting the ethical lens: Shame, disgust, and the body in question. Hypathia, 26, 632-650. Traditional treatment (cont.)

12. 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. Moreland, I. (2012). The injured world: Intersex and the phenomenology of feeling. A Journal of Feminist Cultural Studies, 23, 20-41. Argument for surgery

13. 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 assignment Lev, 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. Criticism of surgical protocol

14. Associated risks of surgery • Need for ongoing, invasive treatment & repeated surgeries • Scarring • Genital pain • Nerve damage & loss of sensation • Impairment in sexual functioning • Infertility • Trauma • Mistrust in adults & medical professionals; subsequent avoidance of helping professionals • Psychosocial difficulties • Psychological distress Murray, S. (2009). Within or beyond the binary or boundary?: Intersex infants and parental decisions. Australian Feminist Studies, 24, 265-274. doi: 10.1080108164640902852464

15. Considerations when determining sex assignment: 1. Preservation of fertility 2. Preservation of genital sensation 3. Maximizing later satisfaction with sex assignment American Psychological Association (2012). Answers to questions about individuals with intersex conditions. Retrieved from http://www.apa.org/topics/sexuality/intersex.aspx Determining sex assignment

16. 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 Common experiences of parents

17. 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 guidance Gough, 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:10.1080/14768320601176170 Zeiler, 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  Parental experiences, cont.

18. 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 Intersex development through childhood and adolescence

19. YouTube video: Intersex Genital Mutilation http://www.youtube.com/watch?v=Twe8p0R8tms&feature=em-share_video_user To have surgery or not?

20. 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 identity Gough, 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:10.1080/14768320601176170 MacKenzie, 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 To have surgery or not?

21. 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 development Overall, 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 Outcome of surgical procedures

22. 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 The third sex

23. 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 Recommendations for therapists