People born with intersex conditions experience trauma and stigma that have not been fully recognized by the medical and therapeutic professions. Current treatment protocols require rapid diagnosis followed by surgical alteration of infants born with ambiguous genitalia which has led to a lack of thorough attention to the psychosocial issues faced by these children and their families. Histories of surgery and silence have left children and families unable to address many of the traumas associated with intersexuality, including stigma, shame, surgical complications, and potential questions about sexual and gender identity.
What's in a Name? The Controversy over "Disorders of Sex Development", by Ellen K. Feder and Katrina Karkazis
In 2006, when the U.S. and European endocrinological societies published a consensus statement announcing a significant change in nomenclature for those born with atypical sex anatomy, whereby variations on the term “hermaphrodite” and “intersex” would be replaced by the term “Disorders of Sex Development”
To date, people with intersex variations have been mainly studied via small-scale clinical research, with only a small amount of reflective commentary contributed by sociocultural scholars. This paper reports on findings from a 2015 online Australian survey of 272 people with intersex variations, which aimed to redress the gap in research on this groups’ experiences and perspectives concerning education. Participants ranged in age from 16 to 87 years, and represented all Australian states and territories. Most had experienced two medical treatment interventions related to their intersex variation: commonly reported interventions included hormonal treatment and genital surgery delivered to participants when they were aged under 18 years of age. Participants reported various physical and psychological impacts from these treatments. Well-being risks were high; most of the group had engaged in suicidal ideation, particularly when individuals first found out about their variation. This impacted on their schooling – almost one-fifth of survey respondents had received no high school certification due to their early dropout and the overwhelming majority did not attend schools with inclusive puberty/sex education provision or counselling. Most survey participants had not disclosed their intersex variation to staff, although more than half had done so to their classmates. Many had experienced bullying. Only one-quarter of participants rated their overall education experiences positively. Participants suggested improvements to schools’ information provision and support features.