One might ask,
“What is atypical genitalia?”,
If you were born with a body that was neither clearly male or female, or have a child born like this, you may already have a sense of the issues facing people like us. It is obvious to point out that we are each unique, and that there is no “normal” when it comes to the way our bodies are created. Indeed we all deviate from the “norm” in some way or another, and we generally celebrate those differences. Bodies Like Ours hopes to positively change the way we think about ourselves, and the way society and the medical community view us.
As expectant parents awaiting the birth of a baby, we face 9 months of uncertainty as to the health of our child. Amniocentesis has done much to allay our fears, but one aspect is certain we think: Our child will be born either a girl or a boy. In one out of two thousand births ~ more often that cystic fibrosis or spina bifida ~ outward genital appearance may not give a clear indication as to whether a newborn is female or male. Most parents, hardly aware of this common occurrence, find themselves in a place where the joyous news of “It’s a boy!” or “It’s a girl!” cannot be shared until further evaluation of their newborn is completed. Sometimes, agonizing days or weeks may pass before definitive tests are complete.How can it be that most people have never even heard about this condition until they are faced with it in their own lives?
Since the 1950’s, the still-current medical protocol has directed physicians to keep important information about this condition from parents and patients alike. It is believed by many that parents will have difficulties bonding with a child that was formed uniquely, and that a parent’s acceptance of of their child as a boy or a girl depends on the outward appearance of their child’s genitals. Giving little faith to a parent’s ability, some surgeons believe that this bonding will only be complete if genital surgeries are performed early in a child’s life.
Girls born with larger than acceptable clitorises are surgically “normalized” by either having the clitorises surgically altered. Boys with small penises often meet a similar fate and arereassigned female. While total clitorectomies are rarely performed today, there are still some surgeons that see this as a solution–giving little regard to how this surgery will affect a child as she grows into adulthood.
Most importantly, physicians have encouraged secrecy for the child; sheltering them from information and explanations. Parents were instructed to remain vague and to simply encourage gender appropriate behavior. Inadvertently we are shamed into secrecy. Striving for normalcy we continue to isolate ourselves. We stopped asking questions that never seemed to get answered to our satisfaction.. We stopped voicing doubts about our different bodies, because we were told that we had been “corrected”: “normalized” to the satisfaction of society’s standards.Our self imposed exile has made it nearly impossible for surgeons, pediatricians and psychologists to provide accurate follow up studies. Even when contacted, we are reluctant to share our views, or we lie: we lie, telling the easy answers and the ones that won’t lead to getting us cut more. Instead we give answers we think they want to hear. Often we have diminished our feelings or suppressed them completely. For many reasons, people like us with bodies like ours are finally finding our voices.
In our short lives as activists in this arena we have made many important discoveries:
- People with bodies like ours have too few resources available to help them answer questions often too personal to share with even their closest confidants
- Parents of children with bodies like ours need more information in understanding the issues facing them. Often, the parent of a newborn is in crisis themselves and must quickly acclimate their knowledge to include the intricacies of atypical genitalia
- Professionals in the medical field are having tremendous difficulty understanding people with bodies like ours because we have remained so isolated.
We are not just “a body” however; we are human beings with souls, feelings, and aspirations.
As you begin your exploration of your “self” and the “selfs” of those who know and love, we hope you will explore some of the basic parts of our being: