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secret intersex
by Kirsty Stretton-Cox
the power of gender
The moment a child is born, even before we assess appearance or health, the first thing we ask is whether the baby is a boy or a girl. It is a seemingly innocent question but there is no more powerful way of underlining the fact that gender is central to our understanding of who we are.
How would we feel if that certainty were to be removed, if our own body could neither be labelled male nor female? What profound effect might this have on our own self-image and the feelings of others towards us?
This is the challenge that many intersexuals face as they and their families deal with the reality of determining who they are.
forming an identity without a gender
It is estimated that around 100,000 individuals in Britain can be described as 'intersex'. Intersexual individuals are born neither fully male nor fully female. Their sexual organs carry traits of both sexes. They may emotionally identify as female, male or inter-gender. Unlike transgender individuals, who are usually born fully one sex or the other but feel they have been given the wrong body for their psychological gender, an intersexual's 'mixed gender' is a physical certainty.
There are many shades of grey within the term 'intersex'. Depending on the cause and its severity, intersexuality can devastate lives or barely affect the intersex individual. Most intersex conditions render the individual sterile – a few don't. The fact that someone has an intersex condition might be apparent externally but not necessarily – an intersex person may present a typical set of external sexual organs but carry partially developed organs of the opposite gender internally.
On the other hand, some intersex individuals do have a partially developed mixture of male and female external genitalia, often leading to difficulties over gender assignment. Should they be brought up as a girl, a boy or – as in the case of Ilizane and Xenia in Channel 4's Secret Intersex – as 'intersex' in its own right?
what am I? dealing with being locked out of the information loop
There is a general awareness of the existence of the hermaphrodite, a misguided and inaccurate old term used to describe what is in fact just one form of intersexuality (the possession of a mix of ovary and teste). Yet, bizarrely, a comprehension of the causes of the intersex conditions, how they vary and what it actually means to be gender neutral are completely absent from our general knowledge.
Until recently, the existence of intersex children was still guarded by a strict taboo, with parents often encouraged to hide their child's condition at all costs, even from the affected child in some cases.
A lack of social understanding and the medical profession's poor level of knowledge and guidance has magnified the problems for many individuals. Some intersexuals have spent a lifetime feeling like, or being treated as, freaks due to a simple, inescapable biological hiccup that occurred while they were still in the womb.
intersexuality – what is it?
There are several entirely separate biological or chromosomal triggers that create an intersex condition. Some are inherited, some are congenital (the result of a biological accident) but the condition or potential for it is inherent at birth. Each condition has a varying degree of incidence through the population and a different set of complications, but all of them have in common the ability to wreck lives if the issues are not dealt with openly and successfully.
To forge a strong, confident identity at peace with one-self is something that we all strive for and feel we have a right to. Given the amount of time that many of us spend trying to discover who we really are by exploring various spiritual, social, psychological and sexual facets of ourselves, we know that this is no easy task even in a body whose gender is unquestioned. To do this within a body that can, in some cases, be biologically and emotionally at war with itself can only be achieved with the best of stable nurturing and wise counsel, albeit with advances in medical understanding (both surgical and hormonal) often playing a vital supporting role.
what creates an intersexual child?
Intersexuality can be caused by a number of genetic and chromosomal conditions. There are seven main intersex conditions:
AIS – Androgen Insensitivity Syndrome. A malfunction (inherited or congenital) which reduces an XY (male-intended) body's receptiveness or sensitivity to the hormone testosterone and causes it to develop along the 'default' female lines that we would all follow if testosterone were not present. Depending on the degree to which testosterone is 'ignored' the body is either totally ('Complete AIS') or only partially ('Partial AIS') unreceptive to testosterone, with varying degrees of complication. Ironically, Partial AIS can lead to more complex genitalia than Complete AIS as the body attempts to masculinise the genitalia but does not fully succeed. In Complete AIS the external genitalia are entirely female but internally there are non-functional testes instead of ovaries and the individual is infertile.
CAH – Congenital Adrenal Hyperplasia. An inherited malfunction which, simplistically put, results in the body producing an undersupply of the hormone cortisol. This in turn causes an oversupply of a male hormone called androgen, which creates problems in both sexes but has a particularly strong influence in 'masculinising' females. Confused genitalia, increased musculature and a tendency to develop masculine body hair can all result. The child is subjected to progressive masculinisation, the labia begin to fuse and the clitoris becomes enlarged and more penis-like.
KS – Klinefelter's Syndrome. In men, a congenital condition called Klinefelter's Syndrome arises when the standard 46XY chromosome pattern of a male human is interrupted by the inclusion, either in the egg or sperm, of at least one extra X chromosome (to become 47XXY, for example). There are several variations including one rare type where people carry some standard 46XY cells and may therefore remain fertile. People with KS can develop a wide range of social and physical hallmarks of the syndrome. The intersexual aspects of the syndrome are caused by a tendency to low testosterone levels and therefore a 'feminised' body type, varying degrees of underdeveloped male genitalia and sterility. KS is the most common chromosomal disorder to affect men and yet it is little known or understood. Moreover, there is still some debate amongst doctors as to whether KS is a true intersex condition, as there is no ambiguity at birth and the amount to which people with the condition are affected varies greatly. The syndrome can create problems obvious enough to cause severe distress and gender confusion, or it can lie undiscovered for a lifetime or until infertility becomes an issue and is investigated.
Other less common causes of intersex conditions are Swyer Syndrome (the result of a damaged testis-determining factor on the Y chromosome) and Persistent Mullerian Duct Syndrome (with which the child, despite having male chromosomes, has a uterus and fallopian tubes because the Y chromosome fails to produce Mullerian inhibiting factor). Children born with 5-alpha-reductase deficiency have testes internally and a vagina and labia externally, but a small penis capable of ejaculation instead of a clitoris (this is usually, however, not clear at birth). Normally raised as girls, they tend to masculinise at puberty and often assume a male sexual identity. Another genetic condition is Turner's Syndrome in which girls are born with a missing X chromosome, which means that they may need medical intervention to help later sexual development, as well as causing a range of other physical characteristics.
gender assignment – how and when?
Generally gender assignment takes place as close to birth as possible and is largely governed by the natural appearance of the genitals. Often this is a successful strategy. However, current research seems to demonstrate that ascribing gender by the appearance of the genitalia is not always successful. Taking into account the child's biological and psychological gender-preference often has more successful results in psychological terms than trying to make intersex children 'match their genitals'. Even where a child's external genitalia seem to strongly suggest one gender at birth, puberty can either exaggerate the neutrality of male genitalia (in the case of Klinefelter's Syndrome where the genitalia can fail to develop) or exacerbate the masculinity of predominately female genitalia, (especially in the case of CAH). In rare cases the genitalia are so 'neutral' that gender-selection is difficult. Therefore assigning a particular gender on the basis of how the genitalia look may not always be successful in the long term.
Without doubt it can be helpful for both the child and his/her parents to choose a gender while still in infancy, but this has to be an individual process. It is one that can open up a raft of complex surgical decisions that are themselves the subject of intense current debate.
surgery – cure or curse?
Where a baby is born with indeterminate genitals, the choice to perform surgery to 'standardise' the genitals is often laid in front of the parents. Indeed, until recently this was a standard approach to dealing with intersexuality, often leading to people being 'made female' simply because this was the easier surgery to perform.
Now, in the light of improved surgical construction techniques, the parents and doctors work together to select the more suitable gender for the child, often based on genetic information rather than the appearance of the existing genitals. Standard practice is to perform one raft of surgery before the child is one year of age, with the next stage (if necessary) undertaken at puberty. However, while surgery does help some people enormously it is not a total answer. There are several major problems that can occur:
- The child's sense of gender as it matures may not be the one that has been surgically created.
- Current research suggests that appearance of genitals is NOT the determining factor in making a person identify with one gender or another, despite previous thinking by psychologists such as John Money that curing the genital anomaly would cure the condition. The latest studies suggest that acceptance and social factors are more important in dealing with intersexuality than the appearance of genitalia.
- Surgery can cause permanent damage to the sexual sensitivity of tissue, ending any chance of full sexual satisfaction. It is now being recognised that retaining the ability to feel sexual satisfaction (and learning to cope with the unusual appearance of one's genitalia) can be a more fulfilling life-choice.
- Because it is complex, surgery is sometimes unsuccessful. For instance, the 'improved' vagina may still be too short for any real sexual activity to take place or the genitalia may still look ill defined or deeply scarred. Poor or unsuccessful surgery can often cause worse psychological problems than existed beforehand.
Where surgery is desired and successful, it can make the difference between happiness and misery for the individual concerned. However, even successful surgery generally still leaves the intersexual with biological and psychological issues to contend with, including the likelihood of sterility. It is rarely a complete answer.
better communication, better education, better lives
Intersexuality is not a disease, but it can have just as devastating an effect where prejudice and ignorance force individuals to suffer in shame or confusion.
However,
- on-going research into genetics and the roles that surgery and hormone replacement therapy can play
- better informed doctors and health professionals
- full access to medical reports
- long-term support
- an understanding of how to make gender choices that maximise long-term happiness
- greater respect for personal choice
- information and support available on the internet
- and the bravery of people born with an intersex condition and their parents in speaking out
are all helping to give people with an intersexual condition the chance to build a life based on a strong and fulfilling identity.
help and info
Channel 4 is not responsible for the content of third party sites.
organisations
Adrenal Hyperplasia Network
Tel: 01543 252961
E-mail: webmaster@ahn.org.uk
Website: www.ahn.org.uk
A UK support group that carries out research and provides e-mail support, information and organises meetings for adults with Adrenal Hyperplasia.
Androgen Insensitivity Syndrome Support Group (AISSG)
Website: www.medhelp.org/www/ais
Worldwide support group, originating in the UK, providing information/support to adults and families affected by intersex conditions such as AIS and similar conditions. Personal stories, a discussion board as well as useful medical information is available online.
Congenital Adrenal Hyperplasia UK Support Group (CAHG)
Tel: 01525 717536
E-mail: webmaster@cah.org.uk
Website: www.cah.org.uk
Provides support, newsletters, information and meetings for families and people with CAH. Aims to raise awareness of the condition with the public and the medical profession.
Gender Identity Research and Education Society
Tel: 01372 801554
E-mail: admin@gires.org.uk
Website: www.gires.org.uk
Promotes and communicates research and provides education to all those in a position to improve the lives of people affected by gender identity.
Gender Trust
Information Line: 07000 790347 (until 10pm)
Website: www.gendertrust.org.uk
Registered UK charity which specifically helps adults who are Transsexual, Gender Dysphoric or Trangender i.e. those who seek to adjust their lives to live as women or men, or to come to terms with their situation despite their genetic background. They can also provide some information on intersex but may refer individuals on to other organisations with whom they work closely.
Intersex Society of North America
4500 9th Ave NE, Suite 300
Seattle WA 98105
USA
Tel: 00 1 206 633 6077 (number is in USA)
E-Mail: info@isna.org
Website: www.isna.org
A public awareness, education, and advocacy organisation devoted to systemic change to end shame, secrecy, and unwanted surgeries for children born with atypical sexual or reproductive anatomies. They will accept enquiries via e-mail, but it's necessary to register on their website first.
Klinefelter Organisation
234 Turton Road
Bolton BL2 3EE
E-mail: ko.info@talk21.com
Website: www.klinefelter.org.uk
A membership-based organisation that provides information about Klinefelter's Syndrome, plus a medical links section. Membership offers a quarterly newsletter and access to meetings.
Klinefelter's Syndrome Association UK
56 Little Yeldham Road
Little Yeldham
Halstead
Essex CO9 4QT
Helpline: 0845 2300047 (No later than 10pm please)
E-mail: coordinator@ksa-uk.co.uk (family enquiries and leaflet requests)
E-mail: adults@ksa-uk.co.uk (adult and teenager enquiries and leaflet requests)
Website: www.ksa-uk.co.uk
Offers support to adults and their partners as well as children and their families who have Klinefelter's Syndrome and its variants.
Middlesex Clinic London (part of UCLH)
Website: www.uclh.org/services/reprodev/index.shtml
NHS clinic which provides information, diagnosis and clinical care for a broad range of conditions including Complete and Partial Androgen Insensitivity Syndrome, Congenital Adrenal Hyperplasia (CAH), Swyers syndrome, Vaginal Agenesis (Mayer-Rokitansky-Kuster-Hauser syndrome) and any variations of development of the genital system or intersex conditions. The website explains how to get a referral and also lists support groups.
Rosa Group
E-mail: rosagroup@yahoo.co.uk
UK support group for women with an absent (or underdeveloped) vagina or womb. This is also called Rokitansky syndrome or MRKH (Mayer-Rokitansky-Kuster-Hauser) Syndrome. Initial contact is by e-mail with phone contact/personal meetings a possible later option.
The Turner Syndrome Support Society (UK)
12 Irving Quadrant
Hardgate
Clydebank G81 6AZ
Tel: 01389 380385 (Mon-Fri 9am-5pm)
Fax: 01389 380384
E-mail: turner.syndrome@tss.org.uk
Website: www.tss.org.uk
Give support and information to those with Turner Syndrome, their families, friends and health professionals.
UK Intersex Association
E-mail1: info@ukia.co.uk
E-mail2: jhl@ukia.co.uk
E-mail3: ukia@mairimac.demon.co.uk
Website: www.ukia.co.uk
An education, advocacy and campaigning organisation which works on behalf of people with gender identity issues. A telephone helpline, fax and a postal address may be available for those who make initial contact via e-mail. The site has an appraisal of surgery and gender assignment in an essay by Milton Diamond.
XY Turners
E-mail: info@xyxo.org
Website: www.xyxo.org
USA group providing information, support and networking for parents and people with Turner's syndrome with some Y material, mixed gonadal dysgenesis and XY-XO diagnosed conditions. The site lists articles and has links to relevant journals.
websites
Gender Talk
www.gendertalk.com
Gender Talk's content, both online and through the airwaves, touches on a broad range of topics related to gender and sexuality. The weekly Gender Talk radio show is the centrepiece of the site and both live and archived shows are available in RealPlayer and MP3 formats online. Additionally, the Gender Talk site offers lists of links, books, and other resources.
Guide to Intersex and Trans Terminologies
www.survivorproject.org/basic.html
Part of the survivor project, this article looks at the ways in which people want to be described, in a way that is not offensive. The site has other articles on the oppression of trans and intersex people, and the violence they have endured.
How is Sex Determined?
www.pbs.org/wgbh/nova/gender/determined.html
Nice little animated Flash movie from the US filmmakers PBS. This interactive feature illustrates the astonishing changes that occur during the first 16 weeks of human development.
Intersex
www.fathermag.com/206/intersex
Easy to understand article that explains what to expect if your child is born intersex. The writer is Alice Dreger, author of the book 'Hermaphrodites and the Medical Invention of Sex'.
Intersexual definition
http://en.wikipedia.org/wiki/Intersex
Gives a definition of intersexuality and many of the related conditions, and takes a look at the wider issues.
John Hopkins University School of Medicine
www.hopkinsmedicine.org/pediatricendocrinology/patient.html
This American site has some useful information that can be read online or downloaded. Subjects covered are 'Syndromes of Abnormal Sex Differentiation' and 'Congenital Adrenal Hyperplasia'.
Management of Intersexuality
www.ukia.co.uk/diamond/diaguide.htm
An up-to-date appraisal of surgery and gender assignment in an essay by Milton Diamond.
Tayside Hospital
www.dundee.ac.uk/medther/tayendoweb/congenital_adrenal_hyperplasia.htm
Lots of information and advice on Congenital Adrenal Hyperplasia (CAH) in adults.
Transsexual, Transgender and Intersex History
www.transhistory.org/history/index.html
Features the biographies and personal testimonies of prominent transgendered and intersex individuals. The site also provides descriptions of major medical initiatives and organisations dedicated to these communities.
reading
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As Nature Made Him: The boy who was raised as a girl by John Colapinto (Perennial, 2001)
Tells the story of a man, whose botched circumcision as a baby and subsequent surgical alteration to a female, was mistakenly used as an argument for the success of such procedures.
Buy this book from Amazon |
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Gender Diversity: Cross-cultural variations by Serena Nanda (Waveland Press, 2000)
This eye-opening account of the differences in how sex/gender diversity is experienced in seven cultures raises our consciousness and challenges our intellectual understanding of what we consider natural, normal, and morally right.
Buy this book from Amazon |
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Hermaphrodites and the Medical Invention of Sex by Alice D Dreger (Harvard University Press, 2000)
Explores encounters between hermaphrodites – people born with "ambiguous" sexual anatomy – and the medical and scientific professionals who grapple with them.
Buy this book from Amazon |
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Intersex and Identity: The contested self by Sharon E Preves (Rutgers University Press, 2003)
Drawing upon life history interviews with adults who were treated for intersexuality as children, the author explores how such individuals experience, and cope with, being labelled sexual deviants in a society that demands sexual conformity.
Buy this book from Amazon |
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Lessons From the Intersexed by Suzanne J Kessler (Rutgers University Press, 1998)
Using the personal stories of several intersexuals, Kessler traces and deconstructs the intriguing history of the medical approach to ambiguous gender during the last century.
Buy this book from Amazon |
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Middlesex by Jeffrey Eugenides (Bloomsbury, 2003)
An epic novel that traces one family's survival on a twisted path through Greece to 20th Century America. The narrator lives within a girl named Callie and the man named Cal who she is to become.
Buy this book from Amazon |
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Sexing the Body: Gender politics and the construction of sexuality by Anne Fausto-Sterling (Basic Books, 2001)
In her meticulously argued and thought-provoking book, the Professor of Biology and Women's Studies at Brown University, argues that labelling someone a man or a woman is a social decision, not a scientific one.
Buy this book from Amazon |
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For details of more organisations, further reading and other websites go to our get help directory.
If you have further questions, why not search the extensive bank of answers provided by our trained advisors? Check out just ask.
(April 2004)
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