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The Fight To Stop Genital Surgeries on Intersex Infants
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when I got my medical records they were
hot they just came off the photocopying
machine the first page I saw and said 46
XY male pseudo hermaphrodite that was
crazy and I started flipping
through I am seeing other things like a
gonad was abnormal my clitoral
enlargement was one point five seven
testicular feminization this is about
the vaginoplasty of chromosomes right
this one talks about when they removed
my undescended testes the narrative they
were crafting for my parents was that I
was like an underdeveloped female child
and then all the procedures they would
do would help me develop into a fully
developed female child they didn't want
to say that like I'm actually intersex
I'm actually not female or male in this
whole stack of paperwork there's never
any mention of what I needed or I wanted
my voice is absent from this entire
stack of medical records pidgin Pagonis
was 18 when they learned the truth about
their medical history it was like
getting kicked in the stomach and just
feeling like your whole life is a lie
kind of it's like that movie with Jim Carrey
Carrey
I'm not going remembering movies Truman
Show yeah a sexes and genders show where
like I think it's simple he realizes and
these people kind of constructed this
narrative for him and then he's like
holy nothing's real I didn't
understand gender and sex outside of the
binary at that point so my only
conclusion at the time was I was a boy
I'm a boy and they all lied to me and as
I grew up and I learned it's not that simple
simple
it's not I wasn't born a boy and I
wasn't born a girl I was born an
intersex intersex is an umbrella term
that covers a range of medical
conditions which result in a person
being between the typical definitions of
male and female some of these conditions
result in what doctors call ambiguous genitalia
genitalia
when this happens parents decide whether
to have their child undergo surgery to
normalize their appearance what did the
doctors tell you when pigeon was an
infant and you know
some differences they needed to do like
a vaginal opening some work on the
clitoris because it was larger than like
a normal and it would look like she
would grow up would be like feeling
damaged or broken like a little penis it
would grow and this would be very bad
for her and hard at her mentally
emotionally psychologically how did the
surgeries that were done on you as a
child affect you now the surgeries left
me with tons of scar tissue and nerve
damage and just complications and really
making things difficult in terms of sex
and pleasure my body from my pelvic area
to like here I think this part of my
body still to this day is very foreign
to me
do you regret choosing surgery for
pigeon oh boy yes yeah I do I know I
felt what I was doing then was saving my
child and doing the right thing and at
all I was doing more harm than good
pigeon now identifies as non-binary and
uses them pronouns they founded a group
called the intersex justice project and
are part of a growing movement of
activists calling for an end to
medically unnecessary surgeries on
infants not recognizing the harm that
they've done these surgeons have gotten
away with these medically unnecessary
surgeries for too long their time is up [Applause]
this movement is no longer confined to
the streets the big fight is in state
legislatures the California State Senate
passed a resolution in 2018 saying
surgeries that aren't medically
necessary should be delayed until the
child is old enough to consent but that
resolution was non-binding an activists
won enforcement makers in five states
have introduced bills to ban certain
procedures until the child was old
enough to choose for themselves all were
asking colleagues is that the person
who's being operated on be able to weigh
in it's that simple
not all former patients support a ban
though some say the surgeries they had
as infants save them from physical pain
and emotional distress
I know Senate bill 201 would have
created additional hardships for me and
my family I know a bill that blocks
access to health care assumes every
person is the same and discredits mental
health would have made my life worse and
the doctors who perform these surgeries
have mobilized in opposition the
societies for pediatric neurology is
lobbying against these proposals calling
them an extraordinary overreach vice
News spoke with dr. Beth Drew's wekki
who serves on the SPU's intersex task
force pediatric neurologists are neither
for nor against surgery we are for the
individualized care using a
multidisciplinary team to treat the
patient and the family what would you
say to a parent who looks at their
intersection genitals and says this
doesn't look normal I just want it to
look normal I really try and enforce
with everybody patient family that
everybody has their own normal and maybe
help them understand the umbrella of
intersex a little bit more closely in
almost all health care situations
parents have the best interest of the
child at hand when they are making these
decisions so for example you think of
parents fully within their rights to
have a child's healthy functional
clitoris we're
if they're uncomfortable with how it
looks I think that that decision is made
as a team together about what is going
to be in the best interest of the child
based on the specific diagnosis for that child
child
but sometimes the decision is based on a
social idea of what that clitoris should
look like right there are situations
that support doing that operation early
on and we do have data that supports
that and therefore when a family chooses
that option we feel comfortable
supporting it our understanding of the
clitoral Anatomy of intersex diagnosis
overall has dramatically changed as well
has our approach to children who are
born intersex but the main point that
the activists are making is I didn't
choose this for myself historically
there was not very much transparency at
all in children who are born intersex
our goal now is to really talk to the
families make sure that they understand
the decisions that they're making and
furthermore we also disclose this
information to the children along the
way with age-appropriate information
legislation that prohibits healthcare
options for all patients or generalizes
medical care for everyone poses a
disservice and possible harm for some
children who may benefit from the
surgery other urologists are now
breaking ranks and speaking out in favor
of legislation dr. Barbara Bach is an
adult urologist at Mount Sinai Hospital
in New York who ultimately should have
the choice for these surgeries the child
or the parents of the child to the
extent to which it is safe the decision
should go to the child whenever he/she
they are bold enough thoughtful enough
empowered enough to make that choice so
do you think decisions about some
surgeries should just be taken away from
the parents entirely I reluctantly say
yes yes
I do why I fear that out of fear or out
of a desire for their children to
conform to their own ideal vision
parents are with the best intentions
seriously restricting their children's
autonomy in ways that are irreversible
as a doctor are you okay with the
government saying you cannot perform
this procedure on a patient you're
getting at do I support the bill in
California as a doctor I would say that
I reluctantly support the bill I really
don't think that anyone really wants
government legislation to be inserted
into the doctor-patient relationship the
trouble is that since the 1990s
urologists have consistently failed to
address the very valid concerns raised
by activist patients and and their
families we have collectively failed to
permit a voice to those who despite our
very best intentions have been hurt is
the chief and Cardinal tenets of
medicine is force to no harm we have
evidence of harm we need to step away
from that and see if maybe we can do
better we're pushing for a shift in the
way that intersex people are treated
towards a first do no harm approach
surgeries can still happen but the
person can grow up and make a decision
and have autonomy over their body and
that's huge as a human right bodily
autonomy and integrity is a human right
and so we want everybody to have that ability
ability [Music]
[Music] you
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