19 June, 2009
The Hon Nicola Roxon
Minister for Health and Ageing
Organisation Intersex International Australia’s response to the Department of Health and Ageing discussion paper on a New National Woman’s Health Policy.
Organisation intersex International (OII) is the world’s largest intersex organisation. It is the only intersex organisation that is made up of, predominantly, intersex individuals with 98% of our membership identifying as intersex.
Organisation Intersex International Australia is the Australian arm of OII.
OII has members on every continent and is represented in at least 14 languages.
Intersex can be thought of as congenital differences in which the development of chromosomal, gonadal, or anatomic sex is atypical. That is, where there are physical differences that can be seen as both male and female at once, not wholly male or female, neither male or female, or other ways of being that are not captured by current sex binary nomenclature.
Intersex does not indicate sexuality. Although most intersex people are heterosexual, many intersex are gay, lesbian, bisexual, celibate or others.
Intersex does not indicate gender. Though most intersex are men or women, many are transgender, pangender, non-gender, multigender, and more.
Intersex is about sex diversity. Most intersex are male and female, some are intersex, asexual, Hijra, twin-spirited, and more. All intersex people have physical sex differences.
Some underlying diagnoses that can lead to intersex are Congenital Adrenal Hyperplasia (CAH), Androgen Insensitivity syndrome (AIS), Kleinfelter Syndrome (KS), mixed gonadal disgenesis, Turners Syndrome and more. There are more than one hundred diagnoses in the literature that can underlie intersex.
Not all diagnoses that may lead to intersex always result in intersex. Congenital Adrenal Hyperplasia (CAH), one of the most common diagnoses, rarely results in intersex for individuals with XY chromosomes and only occasionally for those with XX chromosomes.
Not all intersex results in the binary sex expectations of the diagnosis. Many of those with Kleinfelter Syndrome (XXY) are male and live as men, some are female and live as women and some are neither. The diagnostic expectation is that all people with KS will be men.
Intersex is human differences that challenge conventional notions of male and female and gender role paradigms.
Intersex women have general health needs just like all women, however physical differences mean we have some specific health needs.
Issues specific to intersex females/women…
Emotional and Mental Health
Intersex children come into families as an unexpected event. Our births are often treated as a social emergency where consternation, confusion and dismay characterise the announcement of our arrival. When we have different genitals we are subjected to surgery and assignments without our consent. These discussions are made on our behalf when there are only cosmetic reasons for them and when surgeons and theorists have no idea what the long-term consequences of that surgery might be. (There are no significant long-term studies of assignment and surgical outcomes for intersex individuals).
Our births are for many intersex the beginning of a lifetime of disempowerment. Surgery conducted at birth is usually inadequate and follow up surgery to ‘fix’ previous surgery is common through to puberty and beyond. Scarring, adhesions and loss of sexual sensation are common outcomes. Individual intersex children and teens are often not told of their diagnosis and are unaware of the reasons for their surgeries. They are encouraged toward ‘sex appropriate’ play and behaviour and punished away from behaviour that may conflict with their assignment.
Parents and family can and do reject intersex children because of their differences. OII has a number of intersex members in Australia who have been subjected to rejection and abuse by parents because of their intersex. This is especially true when individuals reject their birth assignment. Parents can in those instances see the child having failed them and their expectations for that child.
When there is less than full acceptance for intersex differences within a family, an intersex child can be subjected to psychological abuse. This abuse can take the form of ostracizing the child, shame and secrecy about the child’s differences, less favourable treatment than that given to siblings and encouragement for siblings to reject intersex differences. Psychological abuse can include an insistence on sex appropriate behaviour and extreme punishment when that behaviour is not forthcoming.
Any profound difference in a child can provoke strong reactions within family groups, when those differences are sexual and sexual difference underpins fundamental perceptions about a persons place and role within families. Reactions can be and sometimes are, violent. Violence is most commonly psychological and often connected to an insistence on sex role behaviour and sex presentation.
A child, teenager, or young adult might have their autonomy violated when surgery, drugs or psychology is insisted on, without the child having the feeling that they can refuse this. Sometimes those things are insisted on despite refusals.
Sexual abuse of intersex is likely to be as prevalent as it is for other children; again no statistics have ever been attempted in this area. OII has some evidence that sex abuse may be more prevalent with intersex than for other children teenagers and young adults. (Sexual abuse here does not refer to non-consensual genital surgery, though that can be seen as a form of sexual abuse and many intersex people think of it as such.)
OII evidence comes from within our membership where many members report histories of childhood sexual abuse. The frequency seems to be higher than the one in four statistic usually given for Australian families.
OII understands that intersex are sometimes targeted for sex abuse because they are Intersex. There is no doubt that some people hold fetishes for others they suppose to be ‘shemale’ or ‘hermaphrodite’ or ‘half man, half woman.’ OII has in its Australian membership individuals who were so targeted and used for the purposes of producing pornography. The primary attraction in those cases was the individual’s intersex.
The effects of that abuse are profound. Besides the trauma, the shame and secrecy, the devastation any child or teenager might feel as a consequence of sex abuse, intersex have the added burden that this was done because they are different. The kinds of dysfunction and injury that emerge from these experiences are apparently so unimaginable that no one has ever seen fit to put any resources in place that is intersex-specific.
OII Australia also notes that sexual abuse is the leading cause for mental illness amongst women irrespective of sex, sexuality or gender diversity. OII Australia accepts current statistics that suggest that more than 25% of all women are subjected to sexual abuse at some time in their lives. We also recognise the long-term effects of abuse and especially child sexual abuse (CSA). OII Australia understands that trauma resulting from CSA and SA in general result in a heavy burden for the individual, those who love and support survivors of sexual assault and to the community at large. That burden is financial, emotional and worst of all, the loss of potential and contribution from the effected woman.
OII Australia recommends a significant increase in funding and services for survivors of CSA and SA. We hold that given the extent of sexual abuse against women and the resulting trauma, mental health funding and especially funding that targets sex assault services should be one of the leading funding objectives of the Australian Department of Health. That funding should extend to providing greater legal access and protection for sex abuse survivors therefore OII Australia recommends that the Australian Department of Health and the Attorney General’s department should establish a joint task force to find ways to coordinate the legal needs and health needs of women. In sexual assault matters the psychological impact of a legal remedy is a significant factor in the recovery of sex assault survivors. That is to say there are mental health issues and legal issues involved in litigation both need to be addresses in coordination and concurrently.
Violence against Women
Physical differences can make some intersex women stand out. We can be thought of as being too masculine for a woman, not feminine enough, sometimes we are thought of as being transgendered or transsexual and suffer much the same discrimination and violence that transgendered and transsexual women are subjected to. Intersex women have been excluded from women-only services and festivals because of our differences.
Sometimes rejection of intersex goes beyond emotional and verbal violence to physical abuse and assault. Intersex women are reluctant to report such abuse because it would necessarily require revealing a part of them that, when not seen as shameful, is seen as ‘freakish.’ Because there are no laws protecting intersex or human rights that would prohibit discrimination and vilification against intersex, the few instances that are reported are reported as general assault and where discrimination protection is sought it is under transgender/transsexual laws because there are no laws against intersex vilification and discrimination.
No long-term studies have ever been conducted to establish how much discrimination, vilification and violence is perpetrated against intersex. OII Australia contends that, from our membership’s experiences, we are routinely subjected to discrimination and nearly all intersex have at one time or another been subjected to violence when it is known the individual is intersex. The knowledge in the community of an individual’s intersex and subsequent violence reinforces intersex’s sense of shame and the need for secrecy.
This violence contributes to the need for mental health services for intersex women.
Reproductive and sexual health and the health effects of sex stereotyping.
Reproductive and sexual health is of special concern to intersex women. Many of the diagnoses that underlie intersex mean poor fertility and the need for assisted reproductive technology.
Intersex have differences that medical and allied professionals have difficulty conceptualising let alone treating. Sex binary expectations and physicality that equate to those expectations can cause women with different sex embodiments to be misdiagnosed and mistreated when presenting for medical help. The expectation that women will not have testicles or that men will not have a uterus can result in life-threatening situations for people with those differences. OII Australia has many members who cannot get access to appropriate medical services because diagnostic paradigms have them at odds with their own sex and gender.
Intersex more than most requires client-based health care. Many intersex differences have treatment paradigms that do not concur with individual intersex differences. Some XXY individuals do not go on to become males despite a treatment paradigm that insists they do. Those who do not conform to this paradigm live a hell of inappropriate testosterone treatments and forced gender role conformity. The same is true of 5 Alpha Reductase where those so diagnosed are thought to go on to be male post puberty. OII contends that up to 40% do not and those 40% are subjected to the misery of a gender role that is impossible to live and a gender denied. Consequently access to appropriate medical treatment is nearly impossible. OII Australia has a member who nearly died from a misdiagnosed ovarian cyst. It was thought our member, who indicated ‘intersex’ on their admission papers, was male and that males could not have ovaries.
Where treatment protocols call for standard medication treatments, those who do not fit the diagnosis paradigm cannot readily access appropriate medication. For instance a diagnosis that classifies an intersex person as male will not allow that individual access to apparently female medications despite the person being female. Medicine often assumes standard sex and gender outcomes for intersex, so that a person who has an AIS diagnosis is always assumed to be female. Access to surgery and medication for that person as a male can only be had by being diagnosed with a mental illness. Some intersex individuals need antiandrogen medication. Because those medicines are not recognized treatments for the specific diagnosis the only path to that medication is to register the intersex person in question as a potential sex offender at the Therapeutic Goods Administration in Canberra. That register also contains the names of numerous transsexual individuals who can only gain access to anti androgens because of this inappropriate medication protocol. This is an outrage against those who are different!!
Privacy, medical documentation and respect for difference.
Intersex births are treated as a social emergency where parents and doctors rush to ‘cure’ noncompliant bodies of newborns. The birth of intersex is still not notifiable and there is no accurate way to know how many intersex that are subjected to surgery are born in Australia each year. The shame and secrecy present at birth extends into the child’s adult years, so that when an adult intersex seeks to discover the circumstances of their birth they are unable to find records of those events. The records are often withheld or destroyed. Intersex must have the right to access those documents, to read and reveal that which they will, and to have access and the contents of them denied to any person without the express consent of the intersex individual.
From birth to death intersex can be subjected to an array of cruel and degrading treatments. Intersex can be assigned a sex and then subjected to surgeries to affirm that assignment. Such surgeries are rarely without complications and usually require extensive follow up surgery as the child grows. Some surgery where neovaginas are created or vaginal modifications are preformed require daily vaginal dilation – this is performed on children as young as two years of age. The surgery is cosmetic and performed to satisfy societal and parental expectations of genital appearance. The child has no part in the irreversible decisions being made. Surgery is followed by extensive gender reinforcement where the child is encouraged to behave in ways appropriate to the assignment and discouraged away from gender behaviour that is at, apparent, odds with the assignment.
The child may be photographed and medically inspected then written up and displayed in medical journals. Many intersex that have received these treatments have vivid memories of them, were humiliated by them, and suffer long-term trauma as a result. The surgeries are largely experimental in that surgeons try to incorporate advances with every new case ands no two intersex are identical in any event. There are no long term follow ups of intersex surgery, no medical researcher has spoken to any significant number of intersex adults, when they are spoken about they are rarely beyond the age of twenty.
The consequence of these interventions in our lives can be humiliating, cruel, degrading and without any possibility of undoing what has been done. Surgeons are unable to say if the adult intersex would be disadvantaged by the surgery and if sexual sensation is inferior.
The consequences of these things are that intersex are further stigmatised, have increased vulnerability to mental health issues and the likelihood of medical complications that could result in death.
The notion of gender equality usually centres on perceptions of gender binaries – men and women. Intersex by and large can be seen to conform to this binary and even when an intersex individual is uncomfortable with it. Gender equality is denied women by women, when an individual is seen not to conform to sex and gender binary expectations. OII Australia is aware of many instances when our members have been denied access to women’s only facilities and events because of perceptions of sex nonconformity. OII Australia contends that such discrimination is essentially transphobic in that we are generally, in these circumstances seen as pretenders to our claimed sex and gender in the same way transsexual and transgender people are.
Accusing any person of being transsexual or transgender so as to diminish their standing is transphobic.
Asserting that a transsexual or transgender person’s claim to being intersex is a bid for greater standing is transphobic.
Intersex, in western society and in most other places is not an advantage.
Intersex remains a dark, shameful secret for most, a difference so reviled that desperate attempts to ‘normalize’ us are taken at the earliest opportunity, whether or not the individual concerned consents or understands.
Our bodies are considered so outrageously shameful it is thought we can enjoy no acceptable life without our differences being camouflaged by cosmetic surgery.
Encouraging the health system to be more responsive to the needs of women.
Where many women find difficulty in being heard by their medical practitioner and specialist medical providers, intersex women are rendered nearly silent however loudly we shout. Despite a considerable volume of literature on intersex and the diagnoses that underlie it, medicine is singularly reluctant to conduct long-term studies on surgical outcomes and the effects of medication regimes.
Medical practitioners and specialists remain obstinately fixed on gender binary expectations, hetronormative behaviours and speculative normalisation of bodies. When medicine forms a view that a diagnosis places the individual as either male or female any exception is treated as a mental illness under the GID-NOS provisions of the Diagnostic and Statistics Manual (DSM).
(It is in the Paraphillias section.)
There is seldom anywhere in the minds of medical specialists the possibility they may be mistaken and that the intersex individual is the most authoratative source to report on sex and gender identification.
This pig-headed blindness results in a good deal of misery for those of us who did not fit with expectations of male or femaleness for our parents and doctors when we were born. We then provoke further outrage when we do not fit the expectations of diagnostic paradigms and protocols.
Intersex is generally regarded as an ‘illness’ of childhood that is cured by specialist interventions. This is patently false and is a misleading myth that is still pushed on to desperate and frightened parents. Intersex children remain intersex irrespective of any interventions and we grow into intersex adults. Intersex adults are nearly invisible in medical literature and our differences are routinely ignored by practicing professionals when seeking help.
The largest longitudinal study conducted on intersex took place in early 2009.
(Clinical Evaluation Study of the German Network of Disorders of Sex Development (DSD)/Intersexuality: study design, description of the study population, and data quality, BMC Public Health 2009, 9:110 doi:10.1186/1471-2458-9-110.)
The study included individuals no older than 30, the majority were children or those in their early teens, no CAH individuals were included because it was thought that being in an intersex study was degrading for them. Nonetheless the study was less than encouraging, with significant dissatisfaction and dysfunction reported. Until this study the largest studies included no more than 50 0r 60 individuals and most no more than 10.
Medicine Pathologises Differences.
In 2006 a group of medical professionals held a meeting in Chicago to discuss intersex then decided to write a paper and call it the Consensus Statement on the Management of Intersex Disorders. They went on to note ‘terms such as “intersex,” “pseudohermaphroditism,” “hermaphroditism,” “sex reversal,” and gender-based diagnostic labels are particularly controversial. These terms are perceived as potentially pejorative by patients and can be confusing to practitioners and parents alike.’
The Chicago Consensus Statement group was hardly a consensus group, with only specialists who were prepared to support the terminology invited and two non-voting intersex individuals present both of who were ashamed of being intersex.
The Disorders of Sex Development (DSD) terminology further pathologises differences. Specialists at this conference decided that rather than confronting common prejudice including their own they would change our name. The aims set out in the Consensus Statement have singularly failed in the objectives they sought and resulted in more non-consensual infant genital surgery. The Chicago Consensus Group intended to silence us by making intersex an identity politics movement and placating parents by insisting their child had a treatable illness, a DSD, and avoid using the dreaded ‘I-word.’
In seeking to improve the lives of intersex, medicine seems only willing to help if that help reinforces gender binaries and disappears intersex. Medicine has never sought to assist in getting intersex rights or to see we have protections at law as intersex. The medical establishment is at this moment engaged in seeking to pathologize those intersex who reject birth assignments. The medical profession has yet to admit the number of mistaken assignments or the misery such mistakes force into intersex lives.
With friends like these…
What elements of the current service response can be improved?
Every area can be improved as there no services provided for intersex at present. Parents need independent advice and contact with intersex adults when their intersex child is born. Intersex births should be the subject of mandatory notifications so that statistics can be kept. An advocate for the child should be appointed so that the child’s best interest are observed and decisions are not driven by social expectations and prejudice. Mandatory follow-ups should be required when surgical intervention occurs. These follow-ups should continue throughout the child’s life so that reliable statistics can be kept that could inform future assignment choices. Anything short of this is at least a denial, and in the worst cases a violent denial, of an individual’s autonomy.
All services should be structured to take into account individuals who do not fit sex binary expectations. Women’s DV services should be structured in ways that do not exclude intersex and womens mental health services should be extended and intersex-inclusive.
The community at large should be educated about intersex to diffuse the prejudice and vilification that surrounds our lives and reduce the probability of intersex individuals being subjected to violence.
Pathologising terms such as ‘disorder’ should not be used in any circumstances. It is rere for intersex to result in an ongoing illness. The most frequent ‘illness’ is infertility and that can only be thought of as an illness from a certain reproductive imperative perspective. Most women beyond the age of fifty live with this ‘Illness.’
What areas in the current service response can be improved to meet the needs of certain groups, including (but not limited to):
Some intersex are also Aboriginal. They should be offered the same support that is available to the general Australian population. Intersex Aboriginals suffer the double disadvantage of being the subject of prejudice because of their race and sometimes rejection within their own community because of their intersex. Specific intersex services and education should be available for Aboriginal Australians.
CALD women (culturally and language diverse)
Education about intersex and the provision of culturally sensitive resources so that intersex children are not subjected to prejudice, shame and fear. Cultural and language diverse communities can be isolated from the wider community and not have the same access to educational resources. They may rely on outdated and unfounded notions about intersex. OII offers multilingual multicultural Intersex support. The Australian Department of Health should offer specific resources and support for intersex from CALD communities.
Women with a disability
Disabled intersex can lose autonomy over their sex and be forcibly assigned when they lack sufficient communication to indicate where they stand in the sex spectrum. In those instances it is a necessity that sex assignment and expectations of sex performance are made with the child’s best interest at heart. Decisions driven by binary sex paradigms may condemn an all ready difficult life to greater suffering. When disabled individuals need medical assistance it is imperative that their intersex is a part of their medical record so that presumptions of male and female are not made. Such presumptions can lead to fatal errors when someone who is, for instance, thought to be a man and has cancer of the ovaries. All medical documentation should have categories beyond male and female as sex designators. (There are only two areas in any person’s life where this really matter – at the surgery and in bed with your partner.)
Older intersex will have lived a life of shame and secrecy because of their differences. Shame and secrecy have been and still are the prevailing paradigm in respect to intersex. Services provided to older women should take into account that clients may be intersex. Service providers should be aware of what intersex is, what those differences mean and how their client might feel about revelations. Some older intersex women will have been subjected to isolation from their family and violence within it because of their intersex. They might have kept their intersex a deep secret so that children and grandchildren may not know (yes we are sometimes fertile and mostly are allowed to adopt… unless of course it is thought we are in a same sex relationship). Revelation or inappropriate comments have the potential to ruin lives.
Young Women should be allowed a life free from violence, shame and secrecy because of their differences; they should be allowed the opportunity to decide their sex and sexuality without family and societal anxieties and insistences of gender binary performances. Where women are in jeopardy of violence and misery because of their Intersex they should be provided with protection and safety. All intersex should have the protection of the law and the same rights to social resources as any other Australian, especially those who come from a disadvantaged minority.
Women from rural and remote communities
It is likely that intersex in remote communities will be subjected to greater pressure given the general sparseness of resources for sex and gender diverse individuals in rural Australia. Intersex women may find themselves without the support and education resources available to the urban counterparts. When intersex arrives in a community, by the birth of an intersex child, by a new arrival in town, or the sudden discovery by a community member of intersex (AIS or XXY for instance), prejudice, shame and secrecy often accompany that news. Education resources for the community at large and for the individuals concerned are essential. The availability of counseling and non-judgmental medical assistance, where that is needed, is likewise indispensable. Like gay and lesbian individuals, intersex can be the target of intolerance and hatred. In small communities gossip and rumor can quickly expose individuals who’s differences are perceived negatively. Legal protection and safe places are as necessary for intersex woman as they are for any other group likely to be the target of bigotry.
Ongoing community education about sex, sexuality and gender diversity is essential for the health and well being ao all women not only those effected.
People in same-sex relationships
Intersex women who live in same sex relationships suffer the opprobrium metered out to lesbian couples with the added difficulties as being seen a something not quite lesbian. Intersex is often ostracized from women’s groups when there is an insistence that one is a ‘woman-born woman’ to qualify for acceptance or being allowed to participate in activities. Resources should not be allocated to women’s groups who exclude intersex women. Health resources made available for lesbian individuals should be available for intersex women without qualification.
OII Australia seeks improvements in this area by the removal of any exclusion of intersex from services or support services and the acknowledgement by government that any funding and support must be available for all women including intersex women.
Coupled to the provision of services is the education of service providers. Service providers such as police, court attendants, lawyers, DOCS & Centrelink staff, sheriffs and so on may be somewhat aware of lesbian relationships and may have some awareness that lesbians are entitled to access services. Very few service providers are aware of what intersex is, let alone how to treat intersex lesbians sensitively and with respect. Greater education of lesbian rights and intersex women is necessary if all women are to be treated equally and fairly.
Organisation Intersex Australia