The document discusses several key issues faced by parents of intersex children and intersex individuals themselves: - Parents experience shock, grief, and confusion when learning their child is intersex and look to doctors for guidance, though doctors' recommendations often change over time. - As a baby's sex is uncertain, the baby seems "sub-human" without a clear sex assigned. Parents struggle with whether to focus on genitals, chromosomes, or hormones in deciding a sex. - Surgery is often recommended to assign a sex, but this can lead to incongruence later in life if a person's gender identity does not match their assigned sex. Many intersex individuals are not supportive of early surgeries

1. Tiffany Dzioba and Melissa Haupt

2.  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

3.  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
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
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

4.  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

5. YouTube video: Intersex Genital Mutilation
http://www.youtube.com/watch?
v=Twe8p0R8tms&feature=em-
share_video_user

6.  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

7.  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