Introduction
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 was believed that parents would 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
depended on the outward appearance of their child's genitals. Giving
little faith to a parent's ability, surgeons believed that this
bonding would only be complete if genital surgeries were performed
early in a child's life. Girls born with larger than acceptable
clitorises were surgically "normalized" by either having the clitorises
recessed or cut off completely. Boys with small penises often met
the same fate and reassigned 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 were
shamed into secrecy. Striving for normalcy we continued to isolate
ourselves. We stopped asking questions that never seemed to get
answered to our satisfaction regardless. 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 tell the easy answers and the ones that won't lead to getting
us cut more, and then ones 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
Bodies Like Ours seeks to mentor and inform. We will continually
update this site toward that goal. We encourage your feedback and
questions.
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