An Intersex Manifesto
This is called “An Intersex Manifesto”, because I recognise that there may be more than one possible such manifesto. In fact, there could be as many as there are intersex people. This is an attempt to capture as much as possible in such a manifesto in a particular organisational context at a particular point in time. It was revised three years later, for a different context, with developing understanding. It is released under a creative commons licence in order that anybody who wants to develop an alternative intersex manifesto can do so, either using this as a basis and amending it, or by utilising parts of this in another manifesto. The only stipulation to using anything contained herein is that the form of licence be retained, respected, and reproduced in any other version, released free from commercial copyright, and with attribution of the origin in this document.
1. The use of the terminology of Disorder of Sex Development (DSD) is unwelcome; that some have appointed themselves to speak on behalf of intersex persons and dictate the acceptance of this is unacceptable.
The imposition of terminology and treatment protocols by medical consortia in a way that deliberately excludes some groups of intersex people is not acceptable.
Historically, some individuals have been excluded from support and activism and denied access to medical care for their intersex health because they have rejected their gender assignment in adulthood, this situation needs to be redressed.
2. The Chicago Consensus Statement on Management of Intersex Disorders is seen as of little value as long as it rests on the premise that intersex as a phenomena is disordered and abnornal.
Those involved in the Consensus should only speak on these issues if they respect that some people desire to have the causes of intersex addressed as health issues, while preferring the effects of intersex embodiment not to be seen as disorder per se.
Medical practitioners who do not consider the requests laid out in this manifesto seriously need to consider that they may find themselves in opposition to the human rights of some of those they treat, thus acting in a potentially anti-humanitarian manner.
3. Historically, a Gender Identity Disorder (GID) diagnosis entailed treatment as a transsexual, and denial of intersex was often necessary in order to gain access to appropriate treatment. For some individuals this has meant that their being intersex was overlooked or ignored, especially when there was a failure of disclosure and medical records were edited or destroyed.
With full disclosure about being intersex an individual might want to review their treatment options differently than on the assumption they were not intersex.
For those who knew that something about their gender role, performance or identity was not right, information available in the public domain tended to promote transsexualism as the problem, and reassignment surgery the solution. For intersex people, cosmetic surgery may not be a cure.
4. Some trying to find out information about themselves and intersex have found themselves dealing with intersex organisations, activists and health care providers who have dismissed their enquiries because of their gender issues; this has left them with little option other than to turn to transsexual groups for support and Gender Identity Clinics for treatment.
These locations cannot always provide the optimum health care or support for people who have underlying medical conditions that gave rise to intersex.
Such organisations, clinics, and activists who have operated in a way that has excluded people with gender issues from accessing health care and support structures that would address their intersex health issues need to be aware that this increases the risks to their health and longevity, potentially breaching their human rights.
5. Transsexual and transgender groups and activists have no right or authority to speak on behalf of or make recommendations for intersex people, whether they have gender issues or not.
There has been a tendency amongst some transsexual and transgender community groups and their representatives to assimilate intersex people with gender issues within the trans communities, thereby reinforcing the problems highlighted in section I.4.
This has also taken the form of laying claim to intersex people’s life-histories as transgender/transsexual life histories.
When this assimilation of intersex people’s issues and co-opting of their narratives has occurred, it has been to further the aims of trans activism rather than help intersex people. When this has been challenged, it has tended to be met by ignoring intersex people’s issues completely, and ignoring any groups and their representatives who try to speak to those needs.
This means that some transgender and transsexual activists have pursued their objectives for transgender and transsexual health and legal status at the cost of intersex people’s health and legal status, and denied them a place at the table.
It is imperative that intersex representatives be consulted on any matters that affects them, especially those that pertain to gender identity issues, medical care and legal frameworks, and not assume that transgender and transsexual representatives are in a position to speak for intersex people.
II. What Intersex Is Not, & What It Can Be
1. Intersex is not the same as DSD.
DSD covers a number of medical conditions which only have in common that they can give rise to intersex, but not all presentations of these conditions can be described as intersex per se.
2. The terminology of disorder when used to describe conditions that give rise to intersex, and intersex variations, is unacceptable.
3. Intersex can mean many things, and includes many aspects, such as anatomical sex characteristics, genital phenotype, diagnosed medical conditions, chromosomal make-up, identity, appearance and community.
It is not possible to exhaustively define what makes somebody intersex, nor limit who is or is not intersex through definition. Being intersex involves having an intersex history and claimed identity arising from an experience of intersex from birth onwards.
4. Being labelled as having a DSD does not make somebody intersex.
5. Being labelled as having a GID does not make somebody intersex.
6. Having genital surgery does not make somebody intersex.
7. Intersex is not about sexual orientation.
8. Intersex is not about gender identity.
9. Intersex is about an intersex identitification.
10. Intersex people can be men, women, or fit neither category.
11. Intersex people can have issues about their gender identity and social role.
12. Intersex people may not have any issues about their gender identity and social role.
13. Intersex people can be heterosexual, lesbian, gay, bisexual, or not fit any of these categories.
14. Intersex people can be feminists.
15. Intersex is not an LGB issue, nor an issue pertaining to any one part of LGB.
16. Intersex is not queer, and it is not a queer or genderqueer issue.
17. Intersex is not trans, and is not a transgender or transsexual issue.
18. Intersex is not a feminist issue.
19. The roots of much intersex experience can be understood in terms of the historic oppression experienced by LGBT people, thus it makes sense for intersex to be part of an alliance that deals with and resists such oppression. Intersex belongs in the heart of the LGBTI movement, not as part of anybody else’s agenda, but as intersex in its own right.
20. Gender variance is not to be confused with intersex, although some intersex individuals may live in some way at variance from the norms associated with a binary gender system, and some have rejected their original gender assignment.
21. It is not possible to clearly demarcate between issues of gender (neurological/social/role/identity/performance) and sex (chromosomes/gonads/hormones/genitalia), and thus these are not clearly defined.
Gender identity is not the same as physical sex; sex and gender are different. What constitutes these is beyond the scope of this document.
Identifying as intersex is a personal choice based upon having intersex experience, features or medical conditions that give rise to intersex; this does not mean somebody can ‘become’ intersex in some way out of choice, or include themselves as intersex because of a perception of hypothetical advantage in doing so as a means to justifying some other form of behaviour, characteristic, identity or condition.
Intersex people are born, not made.
People with intersex identity are made, not born, through their experiences that occur after being born intersex.
IV. Points of Opposition
1. Universal and systematic approaches to all these issues are undesirable, because they are impossible; instead, individual approaches determined by what seems most appropriate to the individual concerned are recommended.
2. Surgical intervention for purely cosmetic reasons is unacceptable until an individual is able to make fully informed consent.
Surgery that entails sterilisiation should be avoided unless there is some immediate, rather than hypothetical, health risk
Non-consensual surgery should only take place if there are clear medical reasons that surgery is absolutely necessary for physical health, survival and or preservation of potential for fertility.
People under 16 must be dealt with sensitively and cautiously.
In these situations the consequences of making the wrong decisions are potentially life-threatening or damaging for the rest of that individual’s life.
V. Diagnosis & Treatment
1. Intersex people may have a specific diagnosis of an underlying medical condition that gives rise to their being intersex.
Some may not, or may not know what this is.
Being intersex is not conditional on having a specific diagnosis and having a specific diagnosis does not mean one is intersex.
People with conditions that give rise to intersex are free to choose not to identify as intersex:
They may choose to identify as men or women with a DSD
They may choose to identify as men or women with specific medical conditions or chromosomal variations
They may choose to identify as other than man or woman
They may choose to identify as hermaphrodites
They may choose to identify as transsexual, transgender, gender variant, queer, etc.
They may choose to identify as intersex
Nobody has the right to tell another dealing with intersex how they can or cannot identify.
2. Intersex people have the right to know what it is that brought them to being intersex, whether they have a diagnosis, and access to their historic medical records.
Where the underlying condition and history is unknown or records lost, it is the responsibility of health-care providers to make every effort to establish an underlying medical condition if the intersex person wishes this.
3. Treatment for any underlying medical condition needs to be carried out in a way that it accords with the intersex person’s own wishes and life choices.
4. Intersex people must not be denied access to treatment they feel is appropriate for them, nor coerced into undergoing treatment they feel is inappropriate.
5. What constitutes ‘appropriate’ and ‘inappropriate’ depends on individual situations.
The intention is to minimise the intervention and medical trauma experienced by intersex people from before birth through to an age when the individual can start making their own decisions, and recognise that the decision as to appropriateness belongs to the individual, and those responsible for health care and parenting are custodians of their right to choose, not proxy decision-makers on their behalf.
6. Sex steroids have life long consequences
If possible, the removal or suppression of natural hormone production should be avoided, as long as possible, and only considered when it becomes an issue the individual is able to deal with themselves, their decisions facilitated through full disclosure and informed consent.
Where hormone blockers and/or sex-steroids have to be prescribed for some reason, fully aware, informed consent of a parent or guardian must be established, and assurance sought that the direction of sex/gender development accords with the will of the child being treated, before commencing treatment.
Every effort must be made to inform the individual being treated, as soon as that person is deemed competent, about the treatment and its consequences, and that their consent is given in continuing any treatment.
7. No intersex child should have to go through a puberty he/she does not want simply to reinforce the original assignment.
If the child’s gender is not that which was assigned, then that needs to be addressed and respected.
8. Intersex people who have gender issues need to be dealt with as individuals, just as do those who do not.
Universal and systematic treatments do not always work well in cases of intersex, and this is true for those intersex people who have gender issues as well.
Life experience, gender fluidity or stability, and mental health all need to be taken into account.
9. Any standard relating to adult reassignment must be the same for both intersex and transsexual people – whether in relation to any sex- assignment or reassignment; this includes adequate counselling, fully informed consent and a time to test out life in the gender role being pursued.
As with children, this needs to be approached sensitively in adults.
It is not within the remit of this manifesto to discuss what treatments are appropriate for trans or transsexual people, or children.
10. Pathologising gender behaviour is unacceptable, especially in children.
Referring to as intersex people as disordered in having ‘gender dysphoria’ is as much an anathema as labelling intersex per se a disorder (as in DSD).
These are not disorders, but human variations – intersex variations and gender variations.
11. Intervention focussed on enforcing conformity to any specific social gender role without consent is opposed, and such intervention should only be available when it is clear the individual is in a position to be able to give informed consent, fully aware of all the life-long consequences of that intervention.
This includes gender reinforcement using hormone blockers and steroid hormones, any form of therapy to reinforce the assigned gender, reparative therapy, and the treatment of childhood gender dysphoria.
VI. Ancillary Demands
1. The right to self determination free from ideological interference by people with other agendas and issues.
2. Intersex-only safe spaces.
Spaces where intersex people are safe to discuss things relevant to them without interference from non-intersex people (such as parents, health care workers, non-intersex intersex activists).
Intersex-separate spaces, to complement the spaces occupied in conjunction with non-intersex people.
3. Gender-neutral toilets in public spaces to be available for any who need or wish to make use of them (as are available for people with disabilities).
4. An option to have optional neutral gender-markers on official documents: ID cards, Driver’s Licences, Tax Returns, Census forms, Passports, etc. – but only for those who want them.
5. A ‘third gender’, is not required, but locations and identifiers that are gender-neutral, options not to declare gender for any who wish to make use of it, available to anybody who does not want to be identified as one of two legal genders regardless of whether they are intersex or not.
6. Places of safe refuge, either at appropriate rape and/or crisis centres available and accessible for when we are physically, verbally or sexually abused, harassed, assaulted, attacked or beaten by friends, family, partners, neighbours and strangers, with support in establishing the training of counsellors specifically for these purposes – or assistance from existing centres in developing refuges and crisis centres ourselves.
An Intersex Mynifesto,
written by Michelle O’Brien 2009
An Intersex Manifesto,
revised by Michelle O’Brien 2012
This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 3.0 Unported License.