A very brief history
(First appeared in Pride Foundation, October 31, 2012)
After author's first "Intersex 101" (L to R: Martha Coventry, Max Beck, David Vandertie, Kristi Bruce, Angela Watts) Univ. of Minn. (Minneapolis) 1997
October 26 is widely recognized as Intersex Awareness Day (IAD). IAD was born when the Intersex Society of North America (ISNA) partnered with Transexual Menace, a transgender advocacy group, to picket the American Academy of Pediatrics (AAP) annual conference in Boston (under the banner of ISNA's first direct action group: Hermaphrodites With Attitude) on October 26, 1996.
So, what is intersex?
Let’s start with the basics: Almost everything you learned back in high school sex education class is wrong. An estimated one in 2,000 babies is born with a reproductive or sexual anatomy and/or chromosome pattern that doesn’t fit the typical definitions of male or female. The conditions that cause these variations are sometimes grouped under the terms intersex or differences of sex development (DSD).
These conditions include androgen insensitivity syndrome, congenital adrenal hyperplasia, Klinefelter’s syndrome, Turner’s syndrome, hypospadias, and many others. Intersex people, or people with DSDs, have lived throughout history in every culture. These conditions occur naturally and individuals and societies have developed different ways of responding to this reality.
When people ask me why I do this work I tell them I was forced to endure damaging normalizing procedures (surgical and hormonal) in isolation and unnamed disgrace simply because I was born with genitals that frightened my caregivers. I advocate for kids and their families because I want to see tomorrow’s generation grow as they are, in bodies untouched by prejudice, and with all possible futures laid before them.
In the United States, beginning in the 1950s, doctors surgically altered infants and children with intersex conditions and conducted other medical interventions intended to make their bodies appear more typical. Their families were told to keep their conditions a secret, sometimes even from the child. Sometimes doctors didn’t tell the parents or the children the full truth about the child’s condition. At that time, doctors believed that early surgical intervention and secrecy would help the child develop a “normal” gender identity as either a boy or a girl.
InterACT understands that the medical treatment of children with DSDs or intersex conditions raises several legal and ethical issues. There are important questions about whether current medical practices meet legal standards for informed consent. Some parents of children born with intersex conditions have reported feeling pressured to make quick decisions, often without complete information about the risks of surgery and the uncertainty of outcomes. Many parents feel that their child’s emotional health is a major factor in their decisions, yet are not given access to specialists in children’s mental health and development.
Physicians may try to ease parents’ fears by downplaying the risks, but parents who learn after the fact about the doubts surrounding elective genital surgery may be dissatisfied. Legal scholars and ethicists have also questioned the process for making surgical decisions on behalf of children with intersex conditions. The ethical and clinical uncertainty that exists in this area raises important questions about whether the current model of decision-making is legally valid. Additional legal questions come up if surgical treatment may result in loss of fertility for the child. No United States Court has ruled on these issues in a published opinion. ©
So, what is intersex?
Let’s start with the basics: Almost everything you learned back in high school sex education class is wrong. An estimated one in 2,000 babies is born with a reproductive or sexual anatomy and/or chromosome pattern that doesn’t fit the typical definitions of male or female. The conditions that cause these variations are sometimes grouped under the terms intersex or differences of sex development (DSD).
These conditions include androgen insensitivity syndrome, congenital adrenal hyperplasia, Klinefelter’s syndrome, Turner’s syndrome, hypospadias, and many others. Intersex people, or people with DSDs, have lived throughout history in every culture. These conditions occur naturally and individuals and societies have developed different ways of responding to this reality.
When people ask me why I do this work I tell them I was forced to endure damaging normalizing procedures (surgical and hormonal) in isolation and unnamed disgrace simply because I was born with genitals that frightened my caregivers. I advocate for kids and their families because I want to see tomorrow’s generation grow as they are, in bodies untouched by prejudice, and with all possible futures laid before them.
In the United States, beginning in the 1950s, doctors surgically altered infants and children with intersex conditions and conducted other medical interventions intended to make their bodies appear more typical. Their families were told to keep their conditions a secret, sometimes even from the child. Sometimes doctors didn’t tell the parents or the children the full truth about the child’s condition. At that time, doctors believed that early surgical intervention and secrecy would help the child develop a “normal” gender identity as either a boy or a girl.
InterACT understands that the medical treatment of children with DSDs or intersex conditions raises several legal and ethical issues. There are important questions about whether current medical practices meet legal standards for informed consent. Some parents of children born with intersex conditions have reported feeling pressured to make quick decisions, often without complete information about the risks of surgery and the uncertainty of outcomes. Many parents feel that their child’s emotional health is a major factor in their decisions, yet are not given access to specialists in children’s mental health and development.
Physicians may try to ease parents’ fears by downplaying the risks, but parents who learn after the fact about the doubts surrounding elective genital surgery may be dissatisfied. Legal scholars and ethicists have also questioned the process for making surgical decisions on behalf of children with intersex conditions. The ethical and clinical uncertainty that exists in this area raises important questions about whether the current model of decision-making is legally valid. Additional legal questions come up if surgical treatment may result in loss of fertility for the child. No United States Court has ruled on these issues in a published opinion. ©
