What is The Interface Project?
The Interface Project is a collection of stories told by people born with intersex traits – or variations of sex anatomy – because No Body Is Shameful ®.
What is intersex?
Intersex is a general term used for a variety of traits in which a person is born with a reproductive and/or sexual anatomy that doesn’t seem to fit the typical definitions of female or male.
So, intersex people have "both" male and female genitals and reproductive organs?
No. This is a physiologic impossibility.
Do intersex and transgender mean the same thing?
No. People born with a variation of sex anatomy are born with bodies that are not considered typically male or female. Most people with intersex traits come to medical attention because doctors or parents notice something unusual about their bodies. In contrast, transgender people have an internal experience of gender identity that is different from most people.
Why have I never heard of this?
There is tremendous shame and secrecy about bodies in many cultures the world over. Perhaps nowhere is this more the case than in Western culture. Introduce a child born with atypical genitals and it becomes clear why most have never heard of it. This invisibility is why The Interface Project exists. Until people know about intersex conditions, the people who live with them and the effect that unwanted surgeries have had on their lives, there will be no change in the current treatment model.
How has American society responded to people with intersex traits in the past?
One reason many people haven’t heard of intersex traits is that these conditions are not widely discussed. In America beginning in the 1950’s, infants and children with intersex traits were routinely given multiple surgeries and 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. Most children born with a variation of sex anatomy were lost to follow-up after surgery and no significant studies were done to evaluate this treatment.
How have intersex adults and families of affected children worked to improve care?
In the 1990’s, intersex adults began stepping forward to say that the medical treatment they received in childhood was harmful, leading to sterility, ongoing pain, scarring, incontinence, loss of genital sensation and sexual function, and depression. Many also pointed out that the secrecy surrounding their conditions had led to damaging feelings of shame and stigma.
Leaders of the adult intersex community called for an end to unnecessary surgeries, and for children with variations of sex anatomy to have a voice in their own treatment. At first, their input had little effect on the treatment of children. In the late 90’s, however, the single case study that provided the basis for the surgery/secrecy model was discredited. The insights of intersex adults began, slowly, to have some impact on the treatment of children born with variations of sex anatomy.
At around the same time, parents of children with intersex traits began to find each other and form support groups. They realized that they, too, were not alone. They began to advocate for models of care that take the experiences and wisdom of children and their families into account. Parents’ groups have organized mostly around specific medical conditions, and have advocated for complete disclosure of medical information to parents, more research, more sensitive care of families (especially at the time of diagnosis), and more psychological and peer support for parents and affected children. These efforts have also started to impact standards of care and support for research.
What happens to children who are born with a variation of sex anatomy today?
In response to the urging of parents, affected adults, and clinicians, new standards of care have recently been released by the Consortium on Disorders of Sex Development (2006) and the International Consensus Conference on Intersex (2006). These standards are not binding, and no data has yet been gathered to show whether they are being widely used. However, they do signal progress.
The new standards encourage doctors to give parents complete information about their child’s condition. Generally, parents are also no longer told to keep their child’s medical condition a secret from the child. Many doctors now recommend psychological support for families and children rather than secrecy and avoidance. However, many families still lack access to these support services.
There continues to be a shortage of follow-up studies, and little is known about how current treatment models actually impact the lives of affected children. Parents of children born with intersex traits find themselves in the difficult position of making medical decisions they never anticipated, in an area where medical opinions are sharply divided, and with little evidence to guide them.
Furthermore, while some parents are comfortable with the information given to them by their children’s doctors, others report feeling pressured to make quick decisions without adequate information or support.