New parents are often asked “Boy or girl?” Yet, either at birth or later in their child’s life, many parents discover that that question contains assumptions that they had never questioned. At least 1 in 1,000 children are born intersex.
The term intersex refers to a wide range of conditions where there is significant anatomical variation from the standard culturally imposed definition of the “female/male” binary. These conditions can arise from chromosomal, hormonal, receptor-mediated, or other causes. Naturally arising intersex conditions generally are not medical problems.
Instead, the problem is one created by our own reaction to the situation, rather than the situation itself.
Even today, physicians regularly encourage parents of intersex infants to opt for surgical alteration to fit them into the socially accepted male or female body types. Tissue is removed or damaged in these procedures, and scarring always occurs. Especially since its function is not obvious to the surgeon, the tissue removed in an intersex child may have been crucial for their sexual sensation. Thus, those subjected to intersex gender assignment surgery near birth or during childhood without their consent may experience negative emotional and sexual consequences later in life.
Many children, for a variety of reasons, face the tension between their identities and the expectations of the society within which they exist. While the motive behind medical intervention may be to reduce this tension and ease the life of the child, many people with intersex argue that this is impossible, and further, that such surgeries only serve to add to the challenges the person will face.
Amy Hinton, who self-identifies as an intersex person and activist, says
Being intersex is a complex issue, and at the age of 21 I was told the truth of my condition. I was born and raised as a female all my life, but I have XY chromosomes (male). When I was a fetus my body did not accept or recognize androgens (testosterone). Therefore my body feminized to appear female. Upon finding out the truth, I was severely depressed at the thought of not being a mom and of course, worrying about what to tell my partners. In the end, my breakthrough came when I realized that my body was suppose to father children not birth them. I was sad over a loss of a reproductive system I was never going to have. The complex issues of intersex are vast, for intersex is an umbrella term for several conditions such as Androgen Insensitivity Syndrome, Congenital Adrenal Hyperplasia, Gonadal Digenesis, and Klinefelter Syndrome just to name a few. Each individual’s treatment is different. One thing the intersex community is working towards is ending unjust surgeries that scared parents are asked to have done one their children to “be just like other little girls (or boys)”. The surgeries should not be happening, for they only perpetuate the social stigma associated with being intersex. We have a long way to go with education about intersex conditions.
Amy has openly shared a moving, detailed version of her story and experience with androgen insensitivity (AIS) on her blog.
Children deserve protection from non-therapeutic surgeries. There is a long list of such unnecessary surgeries that have historically been performed on children, including routine tonsillectomies and routine circumcision (still performed today).
The ethical principle of protection extends to children born with “ambiguous genitalia;” they deserve protection from forced sex assignment surgery. Control over their own bodies and any irreversible modifications to be made to their bodies belongs solely with them. Gender assignment is not therapeutic surgery. Rather than providing surgical alteration of their bodies, the adults in a child’s world can choose to provide a more accepting and supportive environment. That environment can be built by demystifying and de-stigmatizing intersex in our thinking and social norms.
Before making any decisions, parents of children identified as intersex can make contact with adults identifying as intersex and receive peer support from other parents prior to making surgical decisions. At the bottom of this page, you will find links to organizations where such support is available.
Some specific information about intersex
- Intersex FAQ from the Intersex Society of North America
- How common is intersex? There are many kinds, some occurring as often as 1 in 1,000 births.
- Little research has been done to examine the long-term effects of intersex surgery on the recipients. In May of 2003, a study was published by Catherine Minto et. al. in The Lancet detailing the long-term impact of surgeries used to “normalize” the appearances of the clitoris in some intersex individuals. Not surprisingly, data show that sexual function can be compromised by clitoral surgery; in the study population, many of the individuals who had been operated on reported sexual difficulties and inability to orgasm.
- Management of Intersexuality by Milton Diamond, Ph.D. and H. Keith Sigmundson, M.D. contains considerable advice on the care and counseling for a number of intersex conditions. They emphasize referring to the conditions as “atypical” or “unusual” rather than as “abnormal” or “malformed.” They also state that decisions about hormone treatment and irreversible surgery should be deferred until the individual can make an informed decision.
Organizations and Resources
Accord Alliance promotes comprehensive and integrated approaches to care that enhance the health and well-being of people and families affected by disorders of sex development (DSD). (Terms are still being established in this area; DSD is a term some groups use to describe intersex conditions. Others do not like the term “disorder”.)
Advocates for Informed Choice (AIC) is a U.S. organization that undertakes a coordinated strategy of legal advocacy for the rights of children with intersex conditions or DSDs (differences of sex development). They provide support to parents of children with intersex or DSD.
United Kingdom Intersex Association (UKIA) is an education, advocacy, campaigning and support organization which works on behalf of intersexed people.
Bodies Like Ours provides peer support and information for people born with intersex. Their mission includes elimination of the shame and secrecy of intersex births through education, awareness, and community.
OutQ, on the Sirius Satellite Radio Network, is the only 24/7, nationwide source of news, information, and entertainment specifically for the Gay/Lesbian Bisexual/Transgender community, their family, friends, and supporters. OutQ also has a news blog.
Intersex Society of North America (ISNA) an organization that has essentially closed, but served a long and vital tenure and still has a variety of archived material that remains useful to many. Their efforts were devoted to systemic change to end shame, secrecy, and unwanted genital surgeries for people born with anatomies that someone decides is not standard for male or female.
There is also a longer list of recommended books, articles, and organizations here.
If you have additional resources you’d like to share, please add them in the comments.