Intersex
Activist & Educator
Lynnell Stephani L.
Welcome to the website of Intersex Activist and Educator Lynnell Stephani Long. I am an Intersex woman and licensed Paramedic, in Chicago, that speaks publicly about being Intersex and on the subject of improving treatment for people with Intersex conditions and their families.
I have given presentations, facilitated workshops and conducted seminars on Intersex in the US and Canada.
As an Intersex
woman, activist & educator I am more than qualified to give presentations
about intersex issues, and answer questions related to Intersex.
I am available
to give presentations for your classroom, grassroots group, or community
event, and can tailor the presentation to fit your organization's request
or conference theme.
For more information feel free to email me!
- Intersex Workshops & Presentation
What is an Intersex condition?
“Intersex”
is a general term used for a variety of conditions in which a person is
born with a reproductive or sexual anatomy that doesn’t seem to fit
the typical definitions of female or male. For example, a person might
be born appearing to be female on the outside, but having mostly male-typical
anatomy on the inside. Or a person may be born with genitals that seem
to be in-between the usual male and female types—for example, a girl
may be born with a noticeably large clitoris, or lacking a vaginal opening,
or a boy may be born with a notably small penis, or with a scrotum that
is divided so that it has formed more like labia. Or a person may be born
with mosaic genetics, so that some of her cells have XX chromosomes and
some of them have XY.
Though we speak of intersex as an inborn condition, intersex anatomy doesn’t
always show up at birth. Sometimes a person isn’t found to have intersex
anatomy until she or he reaches the age of puberty, or finds himself an
infertile adult, or dies of old age and is autopsied. Some people live
and die with intersex anatomy without anyone (including themselves) ever
knowing.
Which variations of sexual anatomy count as intersex? In practice, different
people have different answers to that question. That’s not surprising,
because intersex isn’t a discreet or natural category.
What does this mean? Intersex is a socially constructed category that
reflects real biological variation. To better explain this, we can liken
the sex spectrum to the color spectrum. There’s no question that
in nature there are different wavelengths that translate into colors most
of us see as red, blue, orange, yellow. But the decision to distinguish,
say, between orange and red-orange is made only when we need it—like
when we’re asking for a particular paint color. Sometimes social
necessity leads us to make color distinctions that otherwise would seem
incorrect or irrational, as, for instance, when we call certain people
“black” or “white” when they’re not especially
black or white as we would otherwise use the terms.
In the same way, nature presents us with sex anatomy spectrums. Breasts,
penises, clitorises, scrotums, labia, gonads—all of these vary in
size and shape and morphology. So-called “sex” chromosomes can
vary quite a bit, too. But in human cultures, sex categories get simplified
into male, female, and sometimes intersex, in order to simplify social
interactions, express what we know and feel, and maintain order.
So nature doesn’t decide where the category of “male” ends
and the category of “intersex” begins, or where the category
of “intersex” ends and the category of “female” begins.
Humans decide . Humans (today, typically doctors) decide how small a penis
has to be, or how unusual a combination of parts has to be, before it
counts as intersex. Humans decide whether a person with XXY chromosomes
or XY chromosomes and androgen insensitivity will count as intersex.
In our work, we find that doctors’ opinions about what should count
as “intersex” vary substantially. Some think you have to have
“ambiguous genitalia” to count as intersex, even if your inside
is mostly of one sex and your outside is mostly of another. Some think
your brain has to be exposed to an unusual mix of hormones prenatally
to count as intersex—so that even if you’re born with atypical
genitalia, you’re not intersex unless your brain experienced atypical
development. And some think you have to have both ovarian and testicular
tissue to count as intersex.
Rather than trying to play a semantic game that never ends, we at ISNA
take a pragmatic approach to the question of who counts as intersex. We
work to build a world free of shame, secrecy, and unwanted genital surgeries
for anyone born with what someone believes to be non-standard sexual anatomy.
By the way, because some forms of intersex signal underlying metabolic
concerns, a person who thinks she or he might be intersex should seek
a diagnosis and find out if she or he needs professional healthcare.
How common are Intersex conditions?
To answer
this question in an uncontroversial way, you’d have to first get
everyone to agree on what counts as intersex —and also to agree on
what should count as strictly male or strictly female. That’s hard
to do. How small does a penis have to be before it counts as intersex?
Do you count “sex chromosome” anomalies as intersex if there’s
no apparent external sexual ambiguity?
Here’s what we do know: If you ask experts at medical centers how
often a child is born so noticeably atypical in terms of genitalia that
a specialist in sex differentiation is called in, the number comes out
to about 1 in 1500 to 1 in 2000 births. But a lot more people than that
are born with subtler forms of sex anatomy variations, some of which won’t
show up until later in life.
Is a person who is intersex a hermaphrodite?
No.
The mythological term “hermaphrodite” implies that a person
is both fully male and fully female. This is a physiologic impossibility.
The words “hermaphrodite” and “pseudo-hermaphrodite”
are stigmatizing and misleading words. Unfortunately, some medical personnel
still use them to refer to people with certain intersex conditions, because
they still subscribe to an outdated nomenclature that uses gonadal anatomy
as the basis of sex classification. In a paper that will be coming out
in the Journal of Pediatric Endocrinology and Metabolism in 2005, five
ISNA -associated experts recommend that all terms based on the root “hermaphrodite”
be abandoned because they are scientifically specious and clinically problematic.
The terms fail to reflect modern scientific understandings of intersex
conditions, confuse clinicians, harm patients, and panic parents. We think
it is much better for everyone involved when specific condition names
are used in medical research and practice.
To read more about the Victorian origins of the medical terminology of
“true” and “pseudo” hermaphroditism, check out chapter
5 of Alice Dreger’s Hermaphrodites and the Medical Invention of Sex
which is available at our bookshelf , or go to our FAQ called What’s
the history behind the intersex rights movement?
One more thing: While some intersex people seek to reclaim the word “hermaphrodite”
with pride to reference themselves (much like the words “dyke”
and “queer” have been reclaimed by LBGT people), we’ve
learned over the years it is best generally avoided, since the political
subtly is lost on a lot of people. The word "hermaphrodite"
is a stigmatizing and misleading word. There is growing momentum to eliminate
the word "hermaphrodite" from medical literature and to use
the word "intersex" in its place. While some intersex people
do reclaim the word "hermaphrodite" with pride to reference
themselves (like words such as "dyke" and "queer"
have been reclaimed by LGBT people), it should be generally avoided except
under specific circumstances.
Victorian
doctors believed that the gonads were the seat of "true sex,"
and thus created a system of nomenclature -- in the absence of any knowledge
of genetics, endocrinology, or embryology -- which categorized people
as "male pseudohermaphrodite," "female pseudohermaphrodite,"
or "true hermaphrodite." It's time to eliminate this quaint
Victorianism from modern medical practice.
What do doctors do now when they encounter a patient with Intersex!
So
far as we can tell, most medical centers still practice the concealment-centered
model of care that grew out of Hopkins’ optimum gender of rearing
system. We still hear many reports of “normalizing” (medically
unnecessary) genital surgeries and hormone treatments that were not
consented to by the patient, and of adult patients and parents of minors
being denied medical records.
What we heard at the American Academy of Pediatrics meeting leads us
to think doctors are fairly aware of the controversy surrounding intersex
treatment, but are still taking the basic approach of “cut now,
maybe ask about quality of life later.”
We are hoping to obtain funding soon for an Audit of Care project which
would allow us to visit several medical centers claiming to use a more
patient-centered model of care. We hope to find out that they are, in
fact, doing progressive work, because if they are, we can hold them
up as models of leadership.
Mayer Rokitansky Kuster Hauser Syndrome
Intersex Foundation of Androgynous Studies
The Intersex
Society of North America (ISNA) is devoted to systemic change to
end shame, secrecy, and unwanted genital surgeries for people born with
an anatomy that someone decided is not standard for male or female.
We have learned from listening to individuals and families dealing with
intersex that:
• Intersexuality is primarily a problem of stigma and trauma, not
gender.
• Parents' distress must not be treated by surgery on the child.
• Professional mental health care is essential.
• Honest, complete disclosure is good medicine.
• All children should be assigned as boy or girl, without early surgery.
What
does ISNA recommend for children with intersex?
After years of consultation with people with intersex conditions,
their parents, their healthcare providers, and others, the following Patient-Centered
Model is what ISNA recommends.
• Children with intersex, parents of those children, and adults with
intersex should be treated in an open, shame-free, supportive, and honest
way. They should consistently be told the truth (this includes providers
being honest about uncertainty), and should be given copies of medical
records as soon and as often as they ask for them.
• Children and adults with intersex, and their family members, should
be provided with access to trained psychologists and social workers, especially
when they are in distress (as some parents of newborns with intersex are).
Parental distress should not be treated with “normalizing” surgery
on children, nor should surgeons, endocrinologists, and other non-psycho-social
specialists attempt to cover family’s counseling needs.
• Care providers should also attempt to connect children and adults
with intersex and parents of children with intersex so that they can give
each other peer support outside of the clinical setting. This helps validate
their feelings and experiences. Peer support saves families and lives.
• Following diagnostic work-up, newborns with intersex should be
given a gender assignment as boy or girl, depending on which of those
genders the child is more likely to feel as she or he grows up. Note that
gender assignment does not involve surgery; it involves assigning a label
as boy or girl to a child. (Genital “normalizing” surgery does
not create or cement a gender identity; it just takes tissue away that
they patient may want later.)
• Medical procedures necessary to sustain the physical health of
a child should be performed. Examples of these would be endocrinological
treatment of a child with salt-wasting congenital hyperplasia, or surgery
to provide a urinary drainage opening when a child is born without one.
• Surgeries done to make the genitals look “more normal”
should not be performed until a child is mature enough to make an informed
decision for herself or himself. Before the patient makes a decision,
she or he should be introduced to patients who have and have not had the
surgery. Once she or he is fully informed, she or he should be provided
access to a patient-centered surgeon.
Does this mean ISNA recommends “doing nothing”? Not at all.
Please re-read the above, and if you’d like more information about
how our recommendations differ from the traditional concealment-centered
model, check out our chart called Shifting the Paradigm of Intersex Treatment
.