Table of Contents Message from the President........................... 1



Table of Contents Message from the President........................... 1
realized the importance of focusing on what is
Table of Contents
really important and what I am really
Message from the President........................... 1
AISSG Australia attends the Australasian
Pediatric Endocrine Group Intersex (DSD)
Workshop.......................................................... 3
National LGBTI Health Alliance Mental Health
Working Group ................................................. 4
Orchids hits the USA ....................................... 5
Goodbye Gonadectomy?: Considering
Surgical Recommendation of Gonadectomy
in Post-Pubertal CAIS Women ....................... 6
Tweet this, YouTube that…Talk with me on
Facebook Chat!................................................ 8
Intersex conditions; a social paradox............. 9
Caster Semenya, the athlete who became a
reluctant hero ................................................. 12
ʻTransgenderʼ Widow Actually Intersex, Court
Decision Ignores Nuance Of Sex, Gender,
And Identity..................................................... 19
Recommended Reading................................ 20
AIS by the Stars! ............................................ 22
Become a Member ........................................ 23
The next dAISy............................................... 24
passionate about, so I have some exciting
plans to get back to the creative activities,
which I enjoy so much.
I also have a sense of potential and
possibilities when I think of our support group.
We have come a long way since the group
started some decades ago at the Royal
Children’s Hospital in Melbourne. We have
established a national network that offers
support to people with a range of conditions
and provide information about AIS and
intersex conditions through our wonderful
website. Through the hard work of a number
of dedicated individuals, the group has also
made much progress with the legal and
ethical aspects of intersex and we are at the
forefront of improving the medical treatment
Message from the President
Hello and welcome to another edition of
dAISy. I hope you find this edition enjoyable
and stimulating! Many thanks go to Phoebe,
our Secretary and Queensland
Representative, for her efforts in putting this
newsletter together.
I am writing to you from my new apartment
having just moved in last week. I am feeling
the excitement of new beginnings and
possibilities and look forward to making some
changes in my life later this year. I have
of children born with intersex conditions. A
recent development in this arena is described
in a report from Phoebe in this edition of
dAISy around a recent workshop held in
Melbourne by the Australian Pediatric
Endocrine Group, which looked at the legal
implications of surgery on children with
intersex conditions.
In 2011, there are still many possible ways
that the group can grow and develop. Miriam,
who is currently a student at Harvard
The Newsletter of the Androgen Insensitivity Syndrome (AIS) Support Group of Australia
January 2011 Edition
University, is working with us as an Intern for
will assist with improving mental health
a 2-month period from June to August 2011.
services so that they are better able to meet
Her visit is a great opportunity for us to look
the needs of intersex people. More on this in
afresh at our group and its potential. During
my article later in the newsletter….
her stay Miriam will be assisting with AISSGA
projects and developing our networks and
Finally, our upcoming Annual Conference
resources as well as conducting research for
provides another opportunity to develop our
her thesis, which will involve interviews with
possibilities and potential. It will be held on
group members. I hope you will take the
August 6 & 7 in Brisbane so I do hope you
opportunity to meet her and share your ideas
will be able to join us for this exciting event.
and stories with her. The AISSGA has
We are very lucky to have Miriam with us.
approved this project and I believe it would
She will be bringing all her experience of
greatly assist with the understanding of the
putting on the huge AISSG USA conferences
lives of people with intersex conditions and
by assisting Phoebe to pull together our most
also promote awareness of issues we face.
fabulous support group meeting ever! A
location has been secured in Newstead,
Miriam has set out the details of the research,
which I understand is a trendy inner city
including privacy and confidentiality details. If
suburb of Brisbane, and the girls are working
you are interested please contact her directly
hard to get sponsors for all meals at the
as soon as possible at 0431208954 or by
email at [email protected] Miriam
has also contributed some interesting articles
We have some details about budget
for this newsletter. Also, if you would like to
accommodation for out-of-towners at special
meet Miriam in person, she will be in:
rates. Please contact us as soon as possible
on [email protected] to secure your
Melbourne from July 14 to July 25th
(Contact Tony at [email protected])
Another area that is showing some exciting
possibilities for growth is Mental Health. I
have a particular interest in this area and
have recently joined the Mental Health
Working Group established by the LGBTI
Health Alliance. I am optimistic that this group
place. Currently, we have four double rooms
for $85/night and two dorm style rooms for
four people maximum each at
$33/night/person. Based on interest we get,
we will reserve accommodation for Saturday
night. If you need to stay Friday / Sunday
night, please contact the hostel directly. The
hostel is Bunk, Fortitude Valley Please
The Newsletter of the Androgen Insensitivity Syndrome (AIS) Support Group of Australia
January 2011 Edition
note: you will be sharing with other AISSG
Justice of the Family Court of Australia, The
people - not with random backpackers!
Hon. Diana Bryant and former Chief Justice
of the Family Court, the Hon. Alastair
We've also got a fun experience lined up for a
Saturday night banquet at a Valley hot spot.
Keep this in mind when you are planning
your weekend in Brisbane.
Nicholson AO. A range of health
professionals and other experts from all over
Australia also attended. The AISSG Australia
was invited to present our position and three
members – Phoebe, Tony and Andie –
The Conference will include time for sharing
personal stories, talks and information
sessions and other events that I hope will
stimulate and inspire you. Bring your ideas for
what you would like to see happen in the
AISSGA and contribute to the direction our
organization evolves in!
attended this historic workshop.
AISSG Australia spokesman, Tony Briffa,
made our support groupʼs position clear to the
assembly. Firstly, he began with what we are
not: that we are not Anti Surgery (we are
against unnecessary surgery and have
Best3wishes to you all and I look forward to
concerns about surgery approval process, but
seeing you at the Conference!
not surgery itself) nor are we Anti Doctors (we
want to work with the medical profession for
the betterment of all people affected by AIS
and similar conditions, parents, siblings, and
Then, Tony stated our position most definitely
supports a process that recognizes the
AISSG Australia attends the Australasian
Pediatric Endocrine Group Intersex (DSD)
On April 7, 2011 the Australasian Paediatric
Endocrine Group (APEG) held a workshop in
Melbourne to discuss the topic: “Decision
making about surgery for infants and children
with disorders of sex development. When is
court authorization needed?”. Special guests
in the afternoon session included the Chief
human and legal rights of families affected by
intersex conditions, that is made objectively
and with an agreed level of independence
and oversight, and that achieves the best
medical, social, reproductive and sexual
outcome possible. Further, we want accuracy
of diagnosis, truth disclosure, recognition of
the importance of peer support and
recognition of peer support groups – after all,
The Newsletter of the Androgen Insensitivity Syndrome (AIS) Support Group of Australia
January 2011 Edition
we have the greatest expertise of what it's
experienced by people with intersex
like to live with the condition from the
conditions, they may often be reluctant or
individual, parent, sibling and carrier
unable to seek help, particularly when they
perspective – and, finally, the establishment
may have to explain the nature of their
of a partnership with the medical and legal
condition and how it affects them to the
community to develop an appropriately
professionals involved. Currently there is a
documented and approved process
and participate in its ongoing review and
continual improvement.
All the members were delighted to be
involved in this direct conversation with
medicos and the legal fraternity, and feel our
lack of trained counsellors and psychologists
who understand the issues that are faced by
intersex people and who can effectively
provide support for them. In addition, most
mental health organizations and public
hospitals are also ignorant of intersex issues
and have little training in how best to meet
their needs.
voices were genuinely ʻheardʼ. We expect
that the AISSG Australia will become involved
The National LGBTI Health Alliance has
with 4hospital ethic committees charged with
recently established a Mental Health Working
the decision making process for surgeries
Group to assist with changing this situation.
and treatments around patients with AIS and
The group aims to promote the mental health
other intersex conditions around the country.
of LGBTI people and to ensure that
appropriate services and treatment are
available to meet their specific needs. It also
aims to promote greater understanding and
awareness of mental health issues for LGBTI
people. I have recently joined this group and
am excited to be representing the intersex
community and helping to make some
National LGBTI Health Alliance Mental
changes in this area. One role of the group
Health Working Group
has been as an Advisory Group to the LGBTI
Many intersex people struggle with varying
Mental Health and Suicide Project overseen
degrees of mental illness at different times in
by the Alliance. You may be aware of the
their lives. Mental illness also affects intersex
recent Mind-OUT survey that was recently
people at above average levels when
sent to our members to assist with gathering
compared to the rest of the population. Due in
data for the Project. The Project aims to
large part to the isolation and stigma that is
promote linkages between the LGBTI sector
The Newsletter of the Androgen Insensitivity Syndrome (AIS) Support Group of Australia
January 2011 Edition
and mainstream mental health organizations
confidence and courage.... Orchids has
with the goal of improving the mental health
allowed me to reflect on the shame and
of LGBTI people.
trauma of my coming-of-age experience and
examine why 'coming out' continues to be
I think mental health is perhaps the most
extremely challenging."
pressing issue for intersex people, and we
desperately need services that can effectively
address our mental health needs. At this time
we have the opportunity to change this
situation and give people with intersex
conditions the support they need. If any of
you have suggestions for the Working Group
or just want to share your thoughts on mental
health issues I would really love to hear from
you. You can contact me (Sandra) at
[email protected]
That's the wonderful Phoebe Hart - the
director, producer and star of this outstanding
Australian feature documentary.
Phoebe has Androgen Insensitivity Syndrome
(AIS), a congenital intersex condition that can
either occur spontaneously at conception or
be passed down the generations. People with
AIS have a typical male pattern but develop
atypical reproductive organs as a result of
their bodies being insensitive to male
As you all know, the film has shown at
various film festivals around Australia with
great success. Sadly, around the world there
Orchids hits the USA
Orchids: My Intersex Adventure, which was
voted in the most popular film at the Brisbane
is a dearth of media that deals personally and
sensitively with the complex issues of
intersex, which is why Orchids is such a gem!
International Film Festival, candidly
examines, with warmth and humour, the
shame and secrecy surrounding intersex.
Phoebe is currently raising funds to attend
world-class festivals and conferences in the
USA in July of 2011 and represent the film in
"Orchids is arguably a 'world firstʼ.... Early
on, I made a conscious decision the film
should be largely autobiographical. This was
important for me on a number of levels and
represented a huge step in terms of self-
person. At present, there are no federal or
state government travel grants available.
The Newsletter of the Androgen Insensitivity Syndrome (AIS) Support Group of Australia
January 2011 Edition
IF WE CAN ALL HELP OUT, Phoebe will be
literature and the current recommendations of
able travel to screen Orchids at Outfest in Los
gonad retention for CAIS until the completion
Angeles, which is one of the world's biggest
of puberty. The findings of Ahmed et al.
and longest running LGBT film festivals.
(2000), Cheikhelard et al. (2008), Purves et
Outfest nurtures and preserves lesbian, gay,
al. (2008), and Hannema et al. (2006)
bisexual and transgender (and intersex!) film
corroborate the initial recommendation made
images and artistry. Phoebe will also attend
by Morris (1953) to retain the gonads for a
the AISSG-USAʼs annual conference in
naturally occurring puberty. Together, they
build a body of literature that supports gonad
maintenance in women with CAIS until after
Anyone who is interested in donating can do
puberty because of the low risks of gonad
so via the Australian Business Arts
malignancy during or before puberty—rates
Foundation (AbaF) and all
hovering around 1-2% in many articles. As a
donations will receive a tax-deductible
set of literature, they enable new questions in
receipt. Simply search for “Phoebe Hart”
research to be explored about gonad
6 “Profiles”. Donations are paid in full to
the artist as a grant. A total of more than $7
malignancy; I will specifically focus on the
million has been donated to the arts through
gonads in the long-term for those with CAIS.
question of maintaining hormone-producing
the AbaF to date.
My Story
It is widely known in CAIS that risks of
cancerous malignancy are much smaller than
the risks of gonad malignancy in conditions
like Swyerʼs Syndrome or Partial AIS as well
Goodbye Gonadectomy?: Considering
as other variants. Because of the lack of
Surgical Recommendation of
recent research focusing on post-adolescent
Gonadectomy in Post-Pubertal CAIS
risk of gonad malignancy, my family and I
remain unconvinced that prophylactic
In our AIS support community, many of us
gonadectomy after puberty is a necessity in
have dealt with gonadectomies— surgeries to
the treatment of Complete AIS. This is
remove our gonads. As a woman with
especially since my CAIS testes produce high
Complete AIS, I have read the medical
levels of testosterone that convert into
The Newsletter of the Androgen Insensitivity Syndrome (AIS) Support Group of Australia
January 2011 Edition
estrogen and naturally compose and regulate
With current technology like blood testing and
my female body. Because of this, I have
MRIs, perhaps prophylactic gonadectomies in
made the decision, along with the support of
CAIS during or after puberty will become a
my endocrinologist, to maintain my hormone-
protocol of the past. If this were to happen,
producing gonads and monitor them with
surgery and other related and highly stressful
blood tests and yearly MRIs.
events for those in our groups might be
reduced and reconsidered, as well as
hormone therapy treatments administered to
teens and young adults after gonadectomy.
For those like me who would prefer to
On the converse, perhaps this research will
maintain their low-risk, CAIS gonads in situ,
better inform prophylactic gonadectomies
the literature has not yet addressed the
after puberty. Either way, more refereed
question of risks and benefits, despite recent
research needs to be done to explore gonad
advances in biomedicine. My question
maintenance practices.
follows: what if surgical measures are not
the best treatment for some
people with CAIS? What if medicine explored
and studied long-term gonad maintenance
Collaboration and Dialogue
and monitoring in adults with CAIS?
Moving forward, I encourage physicians to
To answer these questions, new research
turn to groups like ours for potential
must better address the risks of malignancy
participants and to lend an ear to the unique
of post-pubertal gonads in CAIS. People with
research needs vocalized by our groups.
CAIS have expressed clear interest in
Engage those of us who desire to maintain
maintaining the gonads by choosing to leave
our testes post-puberty in collaborative
them in situ either until late adulthood or
indefinitely (Alvarez et al. 2005; Hannema et
al. 2006; Cheikhelard et al. 2008). Just
While many researchers have used our
having testes inside a CAIS body is not
unique genetic and hormonal makeup to test
pathological; gonad cancer and malignancy
hypotheses of sex differentiation, we should
likewise be able to voice our own research
interests and priorities. This project and
similar ones need to be engaged and
The Newsletter of the Androgen Insensitivity Syndrome (AIS) Support Group of Australia
January 2011 Edition
discussed by physicians, participants, and
As a change from the baby kitten or Lady
support groups collaboratively around best
GaGa videos we all watch on YouTube, what
medical practice and evidence-based
about exploring AIS or intersex narratives? In
medicine in the treatment of our unique
the information age, all you need is a camera,
bodies. Collaboration in research and open
a YouTube account, and 10 minutes to record
dialogue around gonadectomy and gonad
your story and post it to the world. And many
maintenance between physicians and CAIS
are doing just that.
people will enable better informed decisionmaking. Physicians, affected adults, and
A quick YouTube search for “intersex,”
support community—I encourage each of you
“androgen insensitivity syndrome,”
to open dialogue across our unique
“congenital adrenal hyperplasia,” among
communities to create medical care better
others conjures a handful of self-made videos
informed by personal experiences and
of those telling the stories of their bodies and
biomedicine in tandem. Uniting our
their lives to the world. Go explore! Some
perspectives, we can rejuvenate medical
funny and some serious, all will give you the
8 and better serve those with AIS and
other differences of sex development.
opportunity to connect to someone else and
Tweet this, YouTube that…Talk with me
that personʼs individual experiences and
on Facebook Chat!
Exploring Forums for AIS and Intersex
We suggest starting your search with the
Connection Online
video: “5 Best Things About Androgen
Insensitivity Syndrome.” 
YouTube, Twitter, and Facebook have
enabled people with intersex conditions to go
Websites and Email!
global with their stories and their lives—some
anonymously and some out and proud. After
reading this, we encourage you to go out
there and get started yourself, whether it is by
looking up and interacting with stories and
perspectives or recording your own!
The US AIS/DSD Support Group, a group that
supports female-identified individuals with
AIS/DSDs and their loved ones, has online
communities for teens and adults with AIS
and similar DSDs as well as a parent email
group to unite parents and families
considering AIS/DSD treatment. To interact
with AIS/DSD Support Group, feel free to
The Newsletter of the Androgen Insensitivity Syndrome (AIS) Support Group of Australia
January 2011 Edition
email our sister group in the U.S. at
Intersex conditions; a social paradox
[email protected]
Anthea Skinner Ramp Up 24 Jun 2011
The US group is recently undergoing website
renovations--To see the US group’s new
website, we invite you to visit their website at!
The Androgen
Support Group
(AISSGA) is an organisation dedicated to
providing information and support to people
Twitter-search “intersex” and “feminist hulk”
to check out tweeters of all shapes, sizes,
and identities—pop back and forth between
with intersex conditions and their families.
Ramp Up's Anthea Skinner spoke to Bonnie
Hart, Vice President of the AISSGA.
the many tweeters who discuss intersex,
DSDs, and their identities!
For tweets that make you feel strong and
proud, follow the always-empowering
"Intersex is a term that is applied to people
that have external genitalia that's at odds with
their karyotype," says Hart. "There's a
discrepancy between our external [gender]
presentation and our internal biology. It's
been known by many different things
throughout the ages, traditionally people in
that circumstance were called
hermaphrodites." The term covers a range of
conditions in which a person's biological sex
sits somewhere between male (XY!/feministhulk/status/70519
chromosomes) and female (XX).
"I have a condition called Androgen
Insensitivity Syndrome (AIS) that means that I
have XY chromosomes," she explains. "I am
genetically male but because of my
insensitivity to testosterone, I didn't virilise in
utero and so I progressed along a female
The Newsletter of the Androgen Insensitivity Syndrome (AIS) Support Group of Australia
January 2011 Edition
path... When I was born I had undescended
a freak, a weirdo... any manner of useless
testes, no uterus or ovaries."
Diagnosis of an intersex condition is often
To combat these feelings, the AISSGA
surrounded by secrecy and shame, with
encourages full disclosure about intersex
parents feeling unable to answer one of the
conditions to parents and children alike,
most basic questions about their newborns;
allowing people to have the maximum say in
"Is it a boy or a girl?" Hart and the members
their own treatment. In the past it was
of the AISSGA are attempting to remove
common for doctors to encourage parents to
some of this stigma by bringing the topic into
choose a gender for their baby, and then
the open. "I like to speak openly and freely,"
reinforce this gender with irreversible genital
she says. "I've made it a policy in order to
make my experience of being intersex as
transparent as possible, simply because the
While some intersex conditions such as
major symptoms are stigma, secrecy and
Adrenal Hyperplasia can cause medical
10 I've had enough of that in my life."
emergencies like heart attacks, most babies
born with intersex conditions are in no
This attitude of transparency has lead Hart to
immediate danger. The AISSGA discourages
appear in a film made by her sister Phoebe,
cosmetic surgeries on children who are too
who also has AIS, about their experiences.
young to make informed decisions.
Orchids: My Intersex Adventure has screened
at film festivals around the country and will
"Most intersex conditions are not a medical
screen on ABC television later this year. She
emergency, they're a social paradox," says
says having an older sister with the same
Hart. "If a child does not have a medical
condition helped her to come to terms with
emergency, don't treat it like one. That's the
her AIS. "She certainly did a lot of the ice-
major issue. When people find out their child
breaking. It was much more difficult for her
has as intersex condition they have a social
because she's older than me. I kind of always
emergency and want to do something to fix it,
felt like I'd known that I was intersex, she
but it's not broken, because they're beautiful,
didn't. She didn't find out until puberty... or
incandescent human beings. So if it's not
should I say lack of puberty. People have
broken, don't fix it." Genital surgeries on
wonderful imaginations and if they don't know
children can have a number of physical and
the truth, they may start thinking I'm an alien,
psychological repercussions including loss of
The Newsletter of the Androgen Insensitivity Syndrome (AIS) Support Group of Australia
January 2011 Edition
sensation, negative body image, low self-
and with peer support, intersex has been
worth and the possibility of a child being
surgically assigned a gender that they feel is
inappropriate to them as an adult.
The members of the AISSGA are working
hard to facilitate that acceptance process,
"Making choices on behalf of children can
through lobbying and a providing support for
create lifelong issues that don't necessarily
all intersex conditions and people. "We
need to be there," explains Hart. "In my
certainly have done a lot of work with regards
personal circumstance I had my gonads
to raising awareness, creating opportunities
removed when I was about 12. So I no longer
for parents of people with intersex conditions
have a natural source of hormones, I'm
to be able to have a peer based commentary
dependant on HRT. I have to take artificial
about their circumstances, finding lists of
oestrogen in order to maintain proper bone
preferred doctors, lobbying for legislative
density. Without the operation my testes
change," explains Hart.
would still be producing testosterone which
11 then be naturally converted into
oestrogen. Now I have to remember to take
So what should parents do when making
these little blue pills every day. It increases
condition? Bonnie Hart's advice is simple:
the pathology of the situation that I don't
"Reduce interference in a
actually think was necessarily a pathology in
paediatric/childhood state, maximise the
the first place. It was my state of being. I was
decision making and ownership that the
really upset about it. I equate it with rape in
individual has over their own body and the
my mind... I mean, you mess with someone's
course of their life path and increase
pleasure zone, they're going to be angry."
happiness. Reduce any one of those things
decisions for their newborn with an intersex
and you end up with a bunch of unnecessary
Hart is quick to point out that her anger is not
issues that are present throughout life."
directed toward her parents, who made the
decision to allow surgery on medical advice.
For more information about the Androgen
"My mother had a lot of guilt about the way
Insensitivity Support Group Australia, visit
things were. I mean my mum's totally rad, she
their website.
only thinks in terms of ethics... it was just the
dominant paradigm. That's changing because
now the internet has hooked together people
The Newsletter of the Androgen Insensitivity Syndrome (AIS) Support Group of Australia
January 2011 Edition
"Come here, Caster," he said, encouraging
Ed – well done Bonnie on this brave and
her with a gentle smile. "This lady would like
eloquent interview!
to interview you." Semenya frowned. She
reluctantly shook my hand, her slender
Caster Semenya, the athlete who became
fingers escaping through mine.
a reluctant hero
"She is from a good newspaper," said
Harkonen. "She is going to do a nice
interview." Semenya looked unconvinced.
What is a "good newspaper" when journalists
the world over had already written about her
genitals, pored over her most intimate
details? Semenya nodded quietly. She would
speak to me after training, but, I am warned,
She won the world 800m title in 2009 – and
any questions about her gender or 2009 and
12all hell broke loose. The softly-spoken
she will simply get up and walk away. That
South African gives a rare interview
evening, as we sit down together, Harkonen
Anna Kessel
gives us 20 minutes, checking his watch to
time our start.
The Observer, Sunday 12 June 2011
We hunch forward in our armchairs, me
Who is Caster Semenya? In the two years
straining to hear Semenya's softly spoken
since the South African won the 800m world
voice. She looks different. Her features are
title in Berlin, much has been written about
soft, she has beautiful smooth skin, big eyes,
her — Semenya the controversial athlete with
high cheekbones. At the press conference
an intersex condition, a curiosity. But who is
earlier that day, Semenya sat next to
the real Semenya? Who is the 20-year-old
Norwegian runner Ingvill Makestad. There I
who became a world champion and then
watched the other journalists, their eyes
survived everything that followed?
flicking between the two athletes, but
Semenya did not look out of place in the way
In a hotel lobby in Oslo, where Semenya was
that had been suggested when she ran in
competing last week, her agent, Jukka
Berlin. In her ears glittered tiny stud earrings,
Harkonen, called his young athlete over.
on her wrist she wore a bracelet covered in
The Newsletter of the Androgen Insensitivity Syndrome (AIS) Support Group of Australia
January 2011 Edition
diamante hearts and letters that spelled out
later, at a tiny meet attended by the world's
"V4C", a present from her best friend, Violete
media in Lappeenranta, Finland, July 2010,
Raseboya, an athlete with whom she trains in
she was finally allowed to make her return.
Sitting there in Oslo, I am faced with a moral
The first time I heard of Semenya was in July
dilemma. Despite a warning not to ask
2009. A small paragraph in Athletics Weekly
anything she might deem insensitive, I feel,
mentioned an unknown 18-year-old girl who
as a reporter, compelled to push the
had just won the African junior
boundaries, but, as a human, bound to
championships in a then world leading time of
honour my promise. Perhaps Semenya
1min 56.72sec. My eyes popped out of my
senses my edginess because at each new
head. In the busy days building up to the
subject she grows jumpy, waiting to hear
World Championships I forgot about
what is coming next.
Semenya, but her name reappeared in Berlin,
whispered along the press benches.
I think of other testing interviews. A fragile
Within days the story unfolded. A leaked
Paul Gascoigne, his hands shaking as he
memo printed in an Australian newspaper:
West Indies captain Chris Gayle, his mood
Semenya's gender was under suspicion, she
angry and uncensored; Martina Navratilova,
had had tests, she was – allegedly – not
recovering from chemotherapy, touchy,
wholly female. The International Association
abrupt, raw. Semenya's emotions are within
of Athletics Federations confirmed the story
touching distance: scratch the surface and
and all hell broke loose. Somehow, amid the
they would come pouring out. But something
chaos, Semenya kept her composure and
stops me: not her agent, casting a furtive eye
won the 800m title in 1min 55.45sec, the 13th
over proceedings, or the timer on my
fastest time recorded by a woman.
Dictaphone, but something in Semenya's
tried to light cheap cigarettes; the former
eyes seems to say: "please, don't."
As the controversy raged, her rivals
questioned her eligibility and Semenya was
Semenya is best known for running the
ushered away from the media. In the weeks
800m, but it is the 1500m – or the "one thou
that followed, the governing body tried to
five" as she calls it – which is her true love.
decide what to do. Eventually Semenya was
"Yoh," she says, a typically South African
suspended from competition. Eleven months
expression. "I like this race more than any
The Newsletter of the Androgen Insensitivity Syndrome (AIS) Support Group of Australia
January 2011 Edition
other. I like how you can sit back and relax,
subject of whispers and rumours about her
and wait for the right moment, it's not like the
gender, and I wonder if Semenya feels a
800m where you just need to go. One thou
kinship because of this. "We spoke over the
five, you can watch the race and decide what
phone," she says, tight-lipped, "but I lost
to do, but 800m is always sprinting."
contact with her and now I'm trying to find her
Semenya scrunches up her face. "The thing
I'm afraid of the most with the 800m is
Semenya says she never had posters of her
injuries. That's why I don't normally like to run
heroes on the walls of the room she shared
in a group, I prefer to be in front, just in case
with her sister growing up in a tiny village in
someone pushes me with their spikes. I don't
Limpopo province. "Actually, I don't like
like stuff like that."
posters. I don't like things of famous people."
Now she is the famous person, I say, and she
So, why concentrate on the 800m? "Because
laughs as she tries to make sense of her new
I started running good times. One thou five, I
identity. "They want to build a stadium in my
it, but maybe it's one for the future.
Maybe next year, Olympics, I can double up."
name, a lot of things — I don't even know. I
Like Kelly Holmes? She whistles through her
this is not possible for me. This is what I do,
teeth. "Oh! I like what you say. I've met Kelly
so I just have to find a way of being
Holmes, she was in Cape Town. Even her
comfortable with it."
don't like fame, I prefer to have no profile. But
too, she was happy to see me and we talked.
She told me I must keep running, I'm still
At home in South Africa she is a national
young, she told me I have lots of
hero. "Yoh! People are always asking me for
opportunities to do more."
pictures, signing autographs, everywhere I
go. Before, it used to irritate me but I've
Semenya's lifelong idol, though, is the
learned to handle the situation. I cannot run
Olympic and three times 800m world
away, unless I lock myself in my room and
champion Maria Mutola. "She's still my hero,"
never go out."
Semenya says. "I followed her results
everywhere she was running, I wanted to be
I wonder how the whole process has been for
like her. She was running for 21 years, now
her parents, approached over and over again
she's in soccer. We have many similarities." I
by the media to verify the gender of their
wait for her to elaborate. Mutola was often the
child, but Semenya says they are happy.
The Newsletter of the Androgen Insensitivity Syndrome (AIS) Support Group of Australia
January 2011 Edition
"They know it's what I've always wanted [to
Music comes first, doesn't matter what kind,
be successful]. When I was young I wanted to
gospel, hip hop. I like Oleseng [Shuping]. He
be a professional soccer player, they knew
is my favourite." One of the great gospel
maybe one day I could be something,
singers, Oleseng's music is unmistakably
although they were not expecting anything
South African. The singer died from
this big.
pneumonia in July last year, around the time
that Semenya made her comeback, and it is
"They were surprised when I told them I
easy to imagine her listening to his songs: the
qualified for the Commonwealth Games in
sound of home, inspiring and uplifting.
India, and then the world champs in Berlin.
They asked me, 'how is it possible that you
She has travelled the world, but Semenya
do that?' I told them, 'you always told me to
says her favourite food is mielie pap, a maize
believe in myself, that's what I'm doing now'.
staple eaten by millions of Africans. "In South
They always wanted me to be happy. Now it's
Africa I normally eat it everyday," she says.
very important for them that I defend my title
"Pap and vleis [with meat], it's what I like. I
and15not let anyone take it. After that they
don't care anymore."
don't drink gases, like coke, just juice and
water, and I don't drink alcohol. If she could
have a dinner party with celebrity guests, who
With their young daughter travelling the world
would she invite? She grins excitedly.
and being constantly scrutinised, do they
"Angelina and Brad Pitt! Since I saw the
worry? "Yeah, they were worried when this
movie Mr and Mrs Smith, I like what they do.
thing," she pauses, gesturing, her arms lost in
About cooking though, I don't know, I'm not
the indescribable nature of it all, "when this
good at cooking."
thing started. But they see me now and I'm
OK, so why should they worry now? Unless I
There is something joyous about watching
wasn't OK, then they would tell me, 'Caster,
Semenya laugh. Her coach, the fatherly
no, don't do this'."
Michael Seme, once said he feared she
would commit suicide after everything she
Semenya says she never gets nervous
had been through. Seme said she had seen it
before a race. In the call room, where
all before. Even as a junior she had been
famously the other runners shunned her
followed into the toilets, intruded upon, as
ahead of the 2009 final, she likes to put her
competitors checked whether she really was
headphones on and listen to music. "Yoh!
a girl. To remain on the public stage and
The Newsletter of the Androgen Insensitivity Syndrome (AIS) Support Group of Australia
January 2011 Edition
compete among the world's best, no matter
European champion, storms off down the
the headlines and questions, takes
corridor. In Berlin she had sneered at
extraordinary strength of character.
Russian reporters – "just look at her" was her
response when asked if she thought
Born in 1991, three years before South
Semenya was a man. Other runners were
Africa's first free elections, Semenya is not
similarly cruel, but in Oslo there is a different
quite a freedom child, but is young enough
not to have experienced the horrors of
apartheid. For older generations of South
Semenya chats happily to Janeth Jepkosgei,
Africans, the outside world's determination to
the Kenyan former world champion who
categorise Semenya's gender brought back
finished runner-up at the world
uncomfortable memories of a system that had
championships in 2009, the two analysing
categorised its people by race. On
their race, smiling and joking. It is
Semenya's return from Berlin, she was hailed
heartwarming to see. While the press wait,
as a hero of the ANC, a symbol of the
Semenya takes her time getting changed. An
16 for self-determination and freedom.
IAAF official implores her to hurry. "They are
waiting for you," he says, exasperated, but
For Semenya the connection is abstract.
Semenya is reluctant. The reporters check
"You're talking about democracy," she says.
their watches – Usain Bolt is running in 10
"Rights. It doesn't mean anything to me. I
minutes and deadlines are looming.
cannot say I have rights to do whatever I
Eventually Semenya wanders over, her eyes
want, everything I do I report home to my
low and guarded. Suddenly she notices me, a
parents. I'm still a kid, I'll always be a kid to
familiar face in the crowd. She smiles.
my parents. Yes, I learned history at school, I
know everything about apartheid. My dad, he
During our interview I ask Semenya what has
bought the books about it, stuff like that. But I
been the best moment of her life so far. "Ah,"
just move on with my life. It's completely
she says, "I think when I won the world title.
different for me."
That was the best moment of my life. Things
changed, yes, but becoming a world
On Thursday, Semenya races against a
champion, I was never happier before I did
strong field in Oslo, finishing third in a
season's best of 1min 58.61sec. Afterwards,
Mariya Savinova, the world indoor and
The Newsletter of the Androgen Insensitivity Syndrome (AIS) Support Group of Australia
January 2011 Edition
It seems an extraordinary thing to say after all
"Paul" claimed to have a disorder called
she has been through. Can she not imagine a
Androgen Insensitivity Syndrome that had
happier time? She smiles and finally
given him the silhouette of a Hollywood
responds. "If I win it again I will be even
ingénue. I suspected he had something
called Munchausen by Internet; a disorder
that gave him the urge to feign illness.
It wasnʼt long after the wired world plugged
itself ineluctably into the internet that this
phenom began. In 1998, the New York Times
Reality bytes: a fake girl in Damascus
ABC, The Drum Opinion
Helen Razor
17 June 21, 2011
Just about a year ago, I received the oddest
email. “Hi, can we talk,” was its subject; an
invitation I rarely decline. Its author, who
claimed to be a 14-year-old boy with a rare
hormonal disorder, attached a picture of
himself to the correspondence. At first blush,
the image appeared to be of a slightly
underdressed pretty, white, female 'tween in
a tiara.
There were, as I saw it, two possible grownup responses to this dubious plea for
guidance and so I chose them both. The first
was to forward the communication to the
Australian Federal Police for examination.
The second was to research the young manʼs
published a piece about "factitious disorders".
Of course, folks have been faking-it for
hundreds of years but not with the precision,
breadth and speed first seen in the nineties.
With the rise of online support groups and
medical cant always just a Google away,
hundreds of fakers had risen to fame before
the century was done.
There were few so celebrated as Kaycee
Nicole Swenson, purportedly a 19-year-old
woman battling with purported leukaemia
purportedly in Kansas. On May 15, 2001 the
hundreds of thousands of users who had
followed Swensonʼs blogged record of
treatment and remission grieved when her
death was announced.
Swenson, as it turned out, never was ill. The
blonde former star of local track-and-field
couldnʼt have contracted any sort of disease
given that she did not, in fact, exist. The
author of some 300 upbeat posts was, in fact,
The Newsletter of the Androgen Insensitivity Syndrome (AIS) Support Group of Australia
January 2011 Edition
a healthy 40-year-old Kansas housewife.
white dude in drag aside, authenticity
When Debbie Swenson was outed, she was
matters. Especially when it comes to identity.
not entirely repentant. She apologised for the
pain she had caused, but told The Times "I
This is not to say that one should bear the
know I helped a lot of people in a lot of
tyranny of an identity that doesnʼt fit.
different ways."
Research and lived-experience tells us, for
example, that the idea of an "authentic"
Actually, a lot of folks seemed to agree. On
gender identity can be easily undone. But,
the internet thread that unravelled the ruse,
thereʼs an ocean of difference between
one user wrote, "sure, it might not be real.
moving as an individual away from identity
does it really matter? if nothing else, the story
norms and taking millions of blog readers with
of Kaycee's death was a moving experience
for some".
And authenticity certainly wasnʼt the case
This week, following revelations that "Amina
with "Paul" who, as Iʼd suspected, was a
18 the Gay Girl in Damascus was not, in
fact, living evidence of the wrath of Al Assad,
frequent faker. As it turned out, heʼd
we saw similar apologism.
at various turns, to have been disabled,
approached dozens of others online claiming,
sexually confused and physically abused.
In fact, the middle-aged Post-colonial scholar
One of the users he contacted on a sexual
with his hand up Amina sprang to his own
abuse survivors site was aghast to learn that
defence. He wrote from his Edinburgh home
the "woman" to whom she had privately
that he was trying to "illuminate" issues "for a
revealed vivid and particular details of a rape
western audience". Apparently, he felt the
was not a compassionate survivor. Here was
worldʼs colossal pool of Anglophone middle-
someone with a fetish bordering on mania
eastern commentators wasnʼt quite up to the
feeding off the intimate details of her distress.
job. Thousands of others agreed. What,
after all, is a little thing like identity when
Authenticity is not an inauthentic word in the
there are millions of lives at stake?
case of Amina; its value is not diminished by
the focus on "issues for a western audience".
Well, quite a bit as it happens. The ghastly
It makes a pirate handbag of Syriaʼs queer
paternalism and plain old creepiness of some
The Newsletter of the Androgen Insensitivity Syndrome (AIS) Support Group of Australia
January 2011 Edition
You can produce all the Baudrillardian
blog that she was actually born intersex and
culture-of-simulation arguments that you
she is not transgender as has been reported:
wish. Certainly, the idea of "reality" may itself
be imperilled in the world at large; "identity"
While I appreciate all of the support, I am
may be a fluid thing; questioned even by
setting the record straight: I am a
neurologists. We are not yet ready to choke
heterosexual woman, who happened to have
on this sticky, sweet Dessert of the Real.
born intersex, and yes, I did have a
transsexual medical condition, yet that has
Helen Razer is a Melbourne writer with an
been treated and corrected. I urgently ask the
occasional blogging habit at Bad Hostess.
gay and transgender communities to stop
inaccurately identifying me as “transgender”
ʻTransgenderʼ Widow Actually Intersex,
because this falsehood is continuing to make
Court Decision Ignores Nuance Of Sex,
my battle even more difficult. The media has
Gender, And Identity
picked up on this mislabeling, and it may lead
to the assassination of transsexual and
By 19
Zack Ford on Jun 2, 2011 at 12:18 pm
intersex marriage and rights in Texas. The
clueless appropriating of my situation is
dishonest and hurtful. My birth defect is a
LGBT blogs and
medical condition, and has nothing to do with
news outlets
“gender and lifestyles”.
(including this one
Araguz is referring to a disorder of sex
morning) have
development (DSD), which presumably
offered coverage
means that at birth, she did not present as
of the case of
typically XX-female or XY-male and was
Nikki Araguz of Texas. She is the widow of a
misclassified as male. The Intersex Society of
deceased firefighter whose ex-wife sued after
North America estimates that about 1 in 1500
his passing, demanding that Araguz not
are classified as intersex at birth, but because
receive any death benefits because she was
of the different ways intersexuality presents at
born male. The ex-wife successfully
different points in life, the number of people
convinced a judge that the marriage was thus
who are intersex is likely much higher.
a same-sex marriage, prohibited under Texas
law. However, Araguz has now shared on her
The Newsletter of the Androgen Insensitivity Syndrome (AIS) Support Group of Australia
January 2011 Edition
While the identities of intersex and
transgender face a lot of similar challenges in
"Boy or girl?" It's the one question people feel
society, they are not the same. Intersexuality
safe asking a new mother, since it can hardly
refers to an ambiguity of biological sex,
cause offence. But what if the answer isn't
whereas people who are transgender are
straightforward? Even today, in our
struggling with a gender identity that does not
supposedly broad-minded age, you'd feel a
match their sex. It is easy to confuse the two
bombshell had been dropped if the proud
because individuals with either identity may
parent were to reply simply: "Both."
pursue surgical options — as Araguz did —
to achieve identity cohesion.
In Annabel, an intersex baby – one testicle, a
penis, one ovary, a womb and a vagina, since
The judgeʼs decision to void her marriage
you ask – is born to Jacinta. It's 1968, and
because of her identity reveals the way the
she lives in a remote Canadian hamlet with
lawʼs oversimplification of identity hurts
her husband, Treadway, a trapper of few
individuals. The construction of “one man,
words but strong principles. It is he who
one20woman” marriage that equality
opponents champion makes no room for
decides that the child will be brought up as a
people like Nikki Araguz who have unique sex
unlike him, is quite capable of encompassing
and gender identities. Essentially, the judge
her baby's male and female identities in her
ruled that she is male only because a doctor
love. She feels she has lost a daughter, and a
checked that box on a form when she was
friend secretly christens the baby Annabel
born. No one should be able to dictate who
behind the minister's back. So, with a little
Nikki Araguz is except Nikki Araguz, and no
help from the
one should ever have to.
doctors, young
boy, to the eternal sorrow of Jacinta, who,
Wayne unwittingly
Recommended Reading
starts life as a boy
with, as he puts it
Annabel by Kathleen Winter – review
later on, a girl
Carrie O'Grady,, Tuesday 12
curled up inside
April 2011
This Orange short listed debut is poignant but
Kathleen Winter, a
not entirely plausible
Canadian writer, has done well with her debut
The Newsletter of the Androgen Insensitivity Syndrome (AIS) Support Group of Australia
January 2011 Edition
novel: it has made the Orange prize shortlist
out in the bush – makes it the perfect setting
here as well as the shortlists for Canada's
for a story about isolation.
three biggest fiction awards. It didn't win
those, but its delicate treatment of a sensitive
We're never fully immersed in this bleak
subject charmed readers and judges alike.
landscape, though, because Annabel has a
Not many authors have tackled issues of
problem: a nagging sense of implausibility. In
intersexuality or variations on what used to be
the first few pages, Jacinta is in labour at
called, in less tactful times, hermaphroditism.
home. In between bouts of "mind-stopping
Annabel takes a fresh approach: it eschews
agony", we're told, she busies herself pouring
the dark humour of Jeffrey Eugenides's
coffee for her attendants and chatting about
Middlesex, or, in less direct treatments, the
husbands. Really? A teacher tells her class
gruesomeness of Iain Banks's The Wasp
about her dead daughter, how her breath was
Factory, the epic sweep of Virginia Woolf's
like cold petals. Seriously? That's surely
Orlando, the inventive intricacy of Ursula K Le
something that would happen only in literary-
Guin's The Left Hand of Darkness. This is a
21 inward-looking treatment of a quiet,
inward-looking person who is, in a way, more
The most surprising lapse comes when
human than most, being man and woman in
Wayne hits puberty and learns his true
one, yet who feels completely alone in a
nature. You expect shock, fear, anger,
small world.
questions – Why am I like this? Why did they
decide I'd be a boy? Can I choose for myself?
That world looms large in the novel, for
What happens when I fall in love? Wayne,
Wayne grows up in Labrador, on Canada's
though, seems no more than curious. He
eastern coast. A demographer might call the
goes home and muses on the power of
region sparsely inhabited; in fact it has about
names. Later, as a broken bottle is being
the same population as Melton Mowbray,
waved threateningly in his face, he muses on
spread over an area the size of Italy. But
beauty and its loss. You marvel at the
Labrador can boast neither tomatoes nor pork
poignancy of the sentiment, but in the end,
pies; this is caribou country, and there's not
you don't buy it.
enough sun to grow a strawberry. Kathleen
Winter gives us a vivid picture of Labrador,
The author has said that Wayne is
and its frontier aspect – chill winds, hard
"transparent", and he does seem a strangely
work, taciturn hunters who live half the year
blank, alien figure: a man who fell to earth,
The Newsletter of the Androgen Insensitivity Syndrome (AIS) Support Group of Australia
January 2011 Edition
neither male nor female nor both. It's
Leo (Jul 23 - Aug 22) - Leos stubbornly cling
loneliness, not gender, that lies at the heart of
to their pride. Just because you donʼt get
Winter's novel – a confident, serious debut
PMS doesnʼt mean youʼre not a bitch.
that, like the Labrador sun, never quite warms
you through.
Virgo (Aug 23 -Sep 22) - To hide their
vulnerability, Virgos focus attention on what
Ed – weʼd be keen to hear what Australian
they're doing rather than who they are. Quit
readers think of the book. Please send your
masturbating and start dating.
take through to [email protected]
Libra (Sep 23 - Oct 22) - Librans have to
AIS by the Stars!
learn how to deal with confrontation. Now is
a good time to book in with your endo.
Scorpio (Oct 23 - Nov 21) - Scorpios
stubbornly cling to emotional attachments.
Time to get rid of the old dilator collection….
Sagittarius (Nov 22 - Dec 21) - Sagittarians
are moving in many directions. Perfect for
travelling interstate for an AISSG conference!
New to dAISy, we predict your future AIS
Capricorn (Dec 22 - Jan 19) - Capricorns
interactions with doctors and significant
always strive to reach higher goals, and
others with little more than wit, a zodiac chart
decide this is the moment for cock-in-orgasm.
and a crystal ball.
Aquarius (Jan 20 - Feb 18) - Aquarians
Cancer (Jun 21 - July 22)- Cancerians get
refuse to budge whenever an issue involves
things done through the power of their
what they believe to be a matter of principle.
emotional commitment. Anger is getting
Beware when locking horns with your
shitloads done in your world, honey.
childhood doctors!
Pisces (Feb 19 - Mar 20) - A Piscean can too
easily become a victim by identifying with the
The Newsletter of the Androgen Insensitivity Syndrome (AIS) Support Group of Australia
January 2011 Edition
personality and problems of other people.
therapy, gender identity, surgical intervention
Lose the victim mentality – embrace your own
of children with intersex conditions, sexual
sob story!
intimacy, etc.
Aries (Mar 21- Apr 19) - Aries people need to
keep physically busy. Sex is a way of keeping
physically busy, right?
We also provide support to those with related
intersex conditions like Partial and Complete
Gonadal Dysgenesis, MRKH (also known as
Vaginal Agenesis), 5a-Reductase Deficiency,
Taurus (Apr 20 - May 20) - Taureans
stubbornly cling to their own ideas and habits.
So how much longer will you keep tampons in
your bag just in case a girlfriend asks for
3b-Hydroxysteroid Dehydrogenase
Deficiency, 17-Ketosteroid Reductase
Deficiency and 17b-Hydroxysteroid
Deficiency. (The previous name for AIS was
Testicular Feminisation Syndrome).
We acknowledge that people with intersex
Gemini (May 21 - Jun 20) - Using their
conditions (including AIS) range from female
skills, Geminis adapt to any
situation they encounter. Canʼt talk your way
to male and anywhere in between.
out of a bone density scan this time though….
The AISSG Australia believes in a holistic
model of health as per the World Health
Ed – all in good fun, folks 
Become a Member
Organisation definition of 'health':
"Health is a state of complete physical,
mental and social well-being and not
The Androgen Insensitivity Syndrome (AIS)
Support Group Australia Inc. (A0041398U) is
merely the absence of disease and
a peer support, information and advocacy
group for people affected by AIS and/or
related intersex conditions, and their families.
There are many benefits to becoming a
member of the AISSG Australia, including the
dAISy newsletter, regular conferences and
We support members (both in Australia and
meet-ups, and up-to-date information and
overseas) that have any grade of Androgen
news relevant to our members. Of course,
Insensitivity Syndrome, and support any
there is also the wonderful benefit of
issues relevant to living with AIS. These
supporting and meeting others who have so
issues include infertility, disclosure, hormone
much in common and much to share! We are
The Newsletter of the Androgen Insensitivity Syndrome (AIS) Support Group of Australia
January 2011 Edition
also always looking for people who want to
August 7 2011 is eligible to win. Weʼll be
become more involved as representatives
drawing the winner randomly at the AISSG
and/or committee members.
Conference. Thank you to M for the donation
of this wonderful reward.
Vice-President (Media)
Vice-President (Medical)
Victoria/Tas Reps:
Sam and Jocelyn
SA/NT Rep:
Queensland Rep:
Parentʼs Reps
Annette and Ruth
Menʼs Rep:
24 Officer:
Donʼt forget to register for our annual
Weʼd love to have representatives in other
conference 6-7 August in sunny Brisbane
states and territories. We also have
Queensland as soon as possible –
representatives for parents of children with
[email protected]
AIS and men with AIS… and the word is out
that partners of people with AIS need support
The next dAISy
Next issue is January 2012. The deadline for
submissions is 30 December 2011. To
Now is the time to join, renew or rejoin
submit articles, art, jokes, information,
your membership, as the new financial
poems, or whatever you would like to share
begins. As an added incentive, we are
please email [email protected]
offering a prize of a gorgeous Swarovski
crystal figurine. Anyone who joins before
We hope to hear from you again soon!
The Newsletter of the Androgen Insensitivity Syndrome (AIS) Support Group of Australia
July 2009 Edition
Membership Application (2012-2013)
I wish to apply for membership of the Androgen Insensitivity Support Group Australia Inc. I
enclose my annual membership fee, which ends on the 1st of August 2012. To become a member
simply print out the following page and forward it to: PO Box 3239 South Brisbane Q 4101 or
email your details to: [email protected]
Address: ………..……………………………………………………………………………………….
State: ……………… .…………….. Postcode: …………………… Country: …….…………………..
Telephone Number(s):
Email address: ………………………………………………………………………..……………………
Age: ……………(optional) If organisation name of contact person: …………………………………
………………………………………………….. Date: …………………………………..
type: (Please tick one)
Individual Membership:
Organisational Membership:
1 year $20
1 year $40
3 years $50
3 years $100
Please indicate your membership category:
Person with AIS, Gonadal Dysgenesis or similar condition (Please specify)
Family / Partner / Friend of someone with AIS or similar condition
Medical Professional (please state interests in AIS and similar conditions)
Organisation (please state interests in AIS or similar conditions)
Would you like to make a donation to the AIS Support Group Australia?
(Donations of $2 or more are tax deductible)
other $........
Please make all cheques payable to the AIS Support Group Australia. Direct deposit available
on request. Thank you!