SUU, Alm.del - 2014-15 (2. samling) - Bilag 44: Henvendelse af 1/9-15 fra Intersex Danmark vedr. interkønnedes ret til fysisk integritet

Sundheds- og Ældreudvalget 2014-15 (2. samling)
SUU Alm.del Bilag 44
Offentligt

Human rights

and intersex

people

Issue paper

SUU, Alm.del - 2014-15 (2. samling) - Bilag 44: Henvendelse af 1/9-15 fra Intersex Danmark vedr. interkønnedes ret til fysisk integritet

Human rights

and intersex

people

Issue paper published

by the Council of Europe

Commissioner for Human Rights

Council of Europe

SUU, Alm.del - 2014-15 (2. samling) - Bilag 44: Henvendelse af 1/9-15 fra Intersex Danmark vedr. interkønnedes ret til fysisk integritet

The opinions expressed in this work

are the responsibility of the author

and do not necessarily reflect the official

policy of the Council of Europe.

All requests concerning the

reproduction or translation of all

or part of this document should

be addressed to the Directorate of

Communication (F-67075 Strasbourg

Cedex or [email protected]).

All other correspondence concerning

this document should be addressed to

the Office of the Commissioner

for Human Rights.

Issue papers are published by the

Commissioner for Human Rights to

contribute to debate and reflection

on important current human rights

issues. Many of them also include

recommendations by the Commissioner

for addressing the concerns identified.

The opinions expressed in these expert

papers do not necessarily reflect the

Commissioner’s position.

Issue papers are available

on the Commissioner’s website:

www.commissioner.coe.int

Cover and other photos: © Del LaGrace

Volcano from the series “Visibly Intersex”

Cover: Documents and Publications

Production Department (SPDP)

Layout: Jouve

Printed at the Council of Europe

Acknowledgements:

This issue paper was prepared by

Silvan Agius, Member of the Bureau

of the European Committee for Social

Cohesion, Human Dignity and Equality

(CDDECS) and former Policy Director at

the European Region of the International

Lesbian, Gay, Bisexual, Trans and Intersex

Association (ILGA-Europe).

SUU, Alm.del - 2014-15 (2. samling) - Bilag 44: Henvendelse af 1/9-15 fra Intersex Danmark vedr. interkønnedes ret til fysisk integritet

Contents

LIST OF ABBREVIATIONS AND INITIALISMS

SUMMARY

THE COMMISSIONER’S RECOMMENDATIONS

CHAPTER 1 – INTRODUCTION

1.1. Understanding intersex people

1.2. Diversity of intersex people

1.3. Current knowledge base

CHAPTER 2 – MEDICALISATION OF INTERSEX PEOPLE

2.1. Reassigning sex

2.2. Intersex in medical classifications

2.3. Acquisition of parental consent

2.4. Changing perspectives

CHAPTER 3 – ENJOYMENT OF HUMAN RIGHTS

3.1. Universality of human rights

3.2. Key human rights at stake

3.3. Emerging position of international organisations

CHAPTER 4 – LEGAL RECOGNITION OF SEX AND GENDER

4.1. Registration of sex on birth certificates

4.2. Flexibility in assigning and reassigning legal sex/gender

4.3. Non-binary sex/gender marker on identification documents

CHAPTER 5 – NON-DISCRIMINATION AND EQUAL TREATMENT

5.1. Experience of discrimination

5.2. Current legislative responses to discrimination and violence

5.3. Awareness raising, social inclusion and support services

CHAPTER 6 – ACCESS TO JUSTICE AND ACCOUNTABILITY

6.1. Emerging national jurisprudence

6.2. National human rights structures

6.3. Accountability for suffering caused in the past

6.4. Guaranteeing future human rights compliance

NOTES

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List of abbreviations

and initialisms

AIC

AIS

APA

CAH

CEDAW

CESCR

CJEU

CRC

DSD

DSM

ECHR

EQUINET

FIFA

FRA

FRANET

GATE

GID

IAAF

IACHR

ICAO

Advocates for Informed Choice

Androgen insensitivity syndrome

American Psychological Association

Congenital adrenal hyperplasia

Convention on the Elimination of All Forms of Discrimination against

Women

UN Committee on Economic, Social and Cultural Rights

Court of Justice of the European Union

Convention on the Rights of the Child

Disorders of sex development

Diagnostic and Statistical Manual of Mental Disorders

European Convention on Human Rights

European Network of Equality Bodies

European Union

Female

International Federation of Association Football

European Union Agency for Fundamental Rights

European Union Agency for Fundamental Rights multidisciplinary

research network

Global Action for Trans Equality

Gender identity disorder

International Association of Athletics Federations

Inter-American Commission on Human Rights

International Civil Aviation Organisation

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ICCPR

ICD

ICESCR

ICJ

IGM

ILGA

IOC

LGBTI

NEK-CNE

NGO

NHRS

OAS

OHCHR

OII

PACE

UDHR

UNHCR

UNHRC

WHO

WPATH

International Covenant on Civil and Political Rights

International Classification of Diseases

International Covenant on Economic, Social and Cultural Rights

International Commission of Jurists

Intersex genital mutilation

International Lesbian, Gay, Bisexual, Trans and Intersex Association

International Olympic Committee

Lesbian, gay, bisexual, trans and intersex

Male

Swiss National Advisory Commission on Biomedical Ethics

Non-governmental organisation

National human rights structure

Organization of American States

UN Office of the High Commissioner for Human Rights

Organisation Intersex International

Parliamentary Assembly of the Council of Europe

Universal Declaration of Human Rights

United Nations

UN High Commissioner for Refugees

UN Human Rights Council

World Health Organization

World Professional Association for Transgender Health

Intermediate/intersex/unspecified

Human rights and intersex people

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Summary

inary classifications of sex and gender are omnipresent in our society and

inform the way we understand and organise the world around us. The classi-

fication of humankind into two categories – “F” (female) and “M” (male) – and

the entrenchment of those categories in identification documents, expose people

who do not fit neatly into those two categories to human rights breaches. Among

them, intersex persons are especially vulnerable.

Stereotypes hinging on the supposed dichotomy of gender as well as the medical

norms of so-called female and male bodies have allowed for the establishment of

routine medical and surgical interventions on intersex people, even when such

interventions are cosmetic rather than medically necessary, or when those con-

cerned have not been adequately consulted or informed prior to these procedures.

Secrecy and shame around intersex bodies have permitted the perpetuation of these

practices for decades, while the human rights issues at stake have remained for the

most part unaddressed.

To this day, European society remains largely unaware of the reality of intersex people.

However, through the pioneering work of a growing number of intersex groups and

individual activists, the human rights community and international organisations

are becoming increasingly conscious of this situation and are working to draw on

human rights standards to address such concerns.

In May 2014, the Commissioner for Human Rights published a Human Rights Comment

entitled “A boy or a girl or a person – intersex people lack recognition in Europe” which

highlighted the human rights challenges faced by intersex people. This issue paper

gives more detailed guidance and presents the Commissioner’s recommendations

to address the question. It informs governments and practitioners about current

ethical and human rights developments, including global best practices in this area.

Consultations with intersex rights activists and legal and medical experts preceded

the drafting of the document.

Several positive steps have already been taken towards understanding and respond-

ing to the situation of intersex people. The recent adoption of a United Nations (UN)

interagency statement on sterilisation that refers to breaches of bodily integrity of

intersex people constitutes a milestone in combining medical and human rights

approaches. The publication of reports on intersex issues by national councils on

medical ethics has improved awareness of the problems encountered. There have

also been useful initiatives for protecting intersex people against discrimination

through reforms of equal treatment legislation. However, the positive developments

remain isolated. There is an urgent need to make further progress to improve the

enjoyment of human rights by intersex people.

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This issue paper aims to stimulate the development of a framework of action by

suggesting a two-pronged approach. On the one hand, it calls on member states

to end medically unnecessary “normalising” treatment of intersex persons when it is

enforced or administered without the free and fully informed consent of the person

concerned. On the other, it provides possible ways forward in terms of protection

against discrimination of intersex people, adequate recognition of their sex on official

documents and access to justice.

Human rights and intersex people

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The Commissioner’s

recommendations

Member states should end medically unnecessary “normalising” treatment of

intersex persons, including irreversible genital surgery and sterilisation, when it

is enforced or administered without the free and fully informed consent of the

person concerned. Sex assignment treatment should be available to intersex

individuals at an age when they can express their free and fully informed con-

sent. Intersex persons’ right not to undergo sex assignment treatment must be

respected.

Intersex persons and their families should be offered interdisciplinary counsel-

ling and support, including peer support. Intersex persons’ access to medical

records should be ensured.

National and international medical classifications which pathologise variations

in sex characteristics should be reviewed with a view to eliminating obstacles

to the effective enjoyment, by intersex persons, of human rights, including the

right to the highest attainable standard of health.

Member states should facilitate the recognition of intersex individuals before

the law through the expeditious provision of birth certificates, civil registration

documents, identity papers, passports and other official personal documen-

tation while respecting intersex persons’ right to self-determination. Flexible

procedures should be observed in assigning and reassigning sex/gender in

official documents while also providing for the possibility of not choosing a

specified male or female gender marker. Member states should consider the

proportionality of requiring gender markers in official documents.

National equal treatment and hate crime legislation should be reviewed to

ensure that it protects intersex people. Sex characteristics should be included

as a specific ground in equal treatment and hate crime legislation or, at least,

the ground of sex/gender should be authoritatively interpreted to include sex

characteristics as prohibited grounds of discrimination.

National human rights structures such as ombudspersons, equality bodies,

human rights commissions and children’s ombudspersons should be active

in their outreach towards intersex people, including children. They should be

clearly mandated to work on issues related to intersex people and to provide

victim-support services to them. There is a need to facilitate intersex persons’

access to justice.

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Member states should carry out research into the situation and human rights

protection needs of intersex people in different settings. There is an urgent need

to improve public awareness and professional training about the problems

encountered by intersex persons. Intersex people and organisations representing

them should be enabled to participate actively in research concerning them and

in the development of measures improving their enjoyment of human rights.

The human rights violations intersex people have suffered in the past should

be investigated, publicly acknowledged and remedied. Ethical and professional

standards, legal safeguards and judicial control should be reinforced to ensure

future human rights compliance.

Human rights and intersex people

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Chapter 1

Introduction

1.1. Understanding intersex people

hen a newborn is welcomed into this world, the same question is repeatedly

posed: “Is it a boy or a girl?” While at face value that question is innocent,

it indicates just how fundamental sex and gender classifications are to our

society, as well as the binary manner in which the human sexes are categorised. It

also demonstrates our limited understanding of sex, given that the rigid line with

which we separate the sexes into two mutually exclusive categories does not have

a parallel in nature.

The sex assigned at birth will subsequently become a legal and a social fact for the

newborn and will accompany them throughout the rest of their life. As they grow,

go through adolescence, and become an adult, certain mannerisms, behaviours

and interests will be expected to develop as “normal” manifestations of the person’s

assigned sex. Additionally, that sex will be clearly designated on identification

documents as an “F” or an “M”, and in some countries with an even or odd digit

in personal social security numbers. Gendered symbols will also indicate which

sex-segregated facilities are available to that person, and which are not. Likewise,

various forms and documents throughout people’s lives will oblige them to tick

F or M as part of the personal data set required before the provision of the service

or entitlement in question.

While the importance conferred to sex as a classifier does not pose difficulties for

most people, it does create serious problems for those who do not neatly fit within

the “female”/”male” dichotomy. This is because society does not usually recognise a

person without reference to their sex, and as a result, the ability of intersex and trans

people to enjoy their human rights is especially impacted by the current normative

confines of sex and gender.

It is important to note the distinction between intersex and trans people:

Intersex individuals are persons who cannot be classified according to the medical norms

of so-called male and female bodies with regard to their chromosomal, gonadal or

anatomical sex. The latter becomes evident, for example, in secondary sex characteristics

such as muscle mass, hair distribution and stature, or primary sex characteristics such

as the inner and outer genitalia and/or the chromosomal and hormonal structure.

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Differences can include the number of sex chromosomes and patterns (e.g.

XXY

XO),

different tissue responses to sex hormones (e.g. having one ovary and one testis,

or gonads that contain both ovarian and testicular tissue) or a different hormone

balance. The genitalia of some intersex persons may not be clearly identifiable as

male or female, and are hence easily identifiable as intersex at birth; however, for

others the detection only occurs later in life during puberty or sometimes even later

(e.g. due to the absence of menstruation or physical development that is not in line

with the assigned sex). Although they do not usually face actual health problems

due to their status, intersex people are routinely subjected to medical and surgical

treatments – often while very young – to align their physical appearance with either

of the binary sexes without their prior and fully informed consent.

Conversely, trans people externalise an innate gender identity which does not cor-

respond with society’s gender expectations in relation to their assigned sex, and

often encounter various forms of discrimination, especially following their decision

to undertake a process of transition to align their body, appearance and mannerisms

with their gender identity.

In essence, as a result of surgeries or other sex-altering medical interventions, intersex

people are denied their right to physical integrity as well as their ability to develop

their own gender identity, as an a priori choice is made for them. Additionally, these

interventions often disrupt their physical and psychological well-being, producing

negative impacts with lifelong consequences, which include sterilisation, severe

scarring, infections in the urinary tract, reduced or complete loss of sexual sensation,

removal of natural hormones, dependency on medication, and a deep feeling of

violation of their person.

The invisibility of intersex people in society is another serious problem. Their life

experience is often shrouded in secrecy and shame, also as a result of their frequently

being unaware of the surgeries or treatments that were performed on them early

on in their life. Access to medical records is often rendered very difficult, as is access

to personal history, including childhood pictures and other memories. Intersex

individuals who are discovered later on in life may experience the same invasive

treatment – without their free and informed consent – as intersex individuals who

are identified during childhood.

A strong fear of stigmatisation and social exclusion forces most intersex people to

stay “in the closet”, even when they become aware of their sex. Moreover, society

remains largely ignorant about the existence of intersex people since hardly any

information is made available to the public about the matter. Consequently, for

many years, the human rights problems affecting intersex people’s well-being were

either unknown or ignored. Awareness about their suffering has only recently risen

to the fore in a number of human rights fora, and is yet to be recognised by the wider

human rights community as a pressing concern.

This new awareness can be attributed in part to pioneering work led by intersex human

rights activists, self-help and patients’ support organisations, some of which originated

in the 1990s, and the growing interest by the lesbian, gay, bisexual and trans (LGBT)

movement in intersex issues. For example, the mandate of the International Lesbian,

Gay, Bisexual, Trans and Intersex Association (ILGA) was extended to cover intersex

Human rights and intersex people

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issues during its general assembly in 2009. Following that, an annual International

Intersex Forum was organised jointly with ILGA-Europe and intersex organisations

and has, since 2011, provided a safe space for intersex activists from around the world

to discuss their issues and build the movement’s goals and demands. A number

of national or local intersex (or intersex inclusive) organisations do exist, and such

groups have grown in number and membership over recent years.

1.2. Diversity of intersex people

It is important not to lump all intersex people into one new collective category,

such as a “third sex”, perhaps running in parallel to female and male. Such a classi-

fication would be incorrect due to the great diversity among intersex people and

the fact that many intersex individuals do identify as women or men, while others

identify as both or neither. In effect, intersex is an umbrella term including people

with “variations in sex characteristics”, rather than a type

per se.

This diversity is

not unique to intersex people, as – unsurprisingly – a range of variations in sexual

anatomy is also found in women and men that meet the medical norms of their

respective categories.

The term “hermaphrodite” was widely used by medical practitioners during the 18th

and 19th centuries before “intersex” was coined as a scientific and medical term in

the early 20th century. Before the current medical classification of the disorder of

sex development (DSD) was developed, variations in intersex sex characteristics

were classified under different categories, the most common being: congenital

adrenal hyperplasia (CAH), androgen insensitivity syndrome (AIS), gonadal dysgen-

esis, hypospadias, and unusual chromosome compositions such as XXY (Klinefelter

Syndrome) or XO (Turner Syndrome). The so-called “true hermaphrodites” referred

to those who had a combination of ovaries and testes.

Importantly, variations in sex characteristics are different than sexual orientation and

gender identity, even though the three layers interact in the formation of a person’s

personality. The Office of the United Nations High Commissioner for Human Rights’

(OHCHR)

Free & Equal

campaign points out that: “Intersex people experience the same

range of sexual orientations and gender identities as non-intersex people.” In this

vein, reference to intersex people as “intersexuals” is wrong since intersex sex charac-

teristics are unrelated to sexual orientation. Similarly, reference to “intersex identity”

is also incorrect as intersex is not necessarily a matter of identity or self-perception

but mostly refers to physical aspects of the body.

What links intersex people’s experience to that of LGBT people is the homophobic

and/or transphobic motives behind most discrimination to which they are subjected.

For example: “Parental choice against intersex may ... conceal biases against same-sex

attractedness and gender nonconformity.” One can say that human rights breaches

against the wider LGBTI community often find their source in the sex and gender

dichotomies which underpin society, particularly when they are accompanied with

prejudicial assumptions that accord a superior and normative status to heterosexuality

(heteronormativity) and conformity with the sex assigned at birth (cisnormativity).

This is perceptible in the way such dichotomies are upheld through a stereotypical

Introduction

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separation between the appearances and roles that women and men are allowed

to have, and the enforced legal and/or social distance separating the two.

In view of the overlap in the experience of discrimination, LGBTI is often used as an

umbrella acronym for this population group despite its inherent diversity. The use

of the acronym has been adopted by European and international organisations such

as the United Nations (UN), the Council of Europe and the European Union (EU).

Intersex people also share some human rights concerns with other minorities,

including persons with disabilities and those who have been subjected to genital

mutilation or cutting. As the legal framework protecting people with disabilities is

well established at the international level and far-reaching in several countries, it

may be useful for intersex people in the protection of their rights or as a reference

for the development of intersex-specific legislation.

Moreover, while numbers of a particular group should not have a bearing on their

access to human rights, it needs to be noted that the prevalence of intersex people

may not be as rare as is sometimes believed. While an expert at a health centre is

likely to quote a figure between 1 in 1 500 and 1 in 2 000, based on an estimate on

the number of newborns diagnosed as intersex, many people are born with subtler

forms of sex variations that are not immediately detectable. This latter group, however,

still does not meet medical standards of female and male and may be subjected to

medical interventions at a later stage. In her research through medical literature for

frequency estimates, Anne Fausto-Sterling concluded that around 1.7% of human

births are intersex.

1.3. Current knowledge base

Several gaps remain with regard to the human rights knowledge base on intersex

issues. To date there is little information about the legal and social situation of intersex

people in many European countries and around the world. It is thus not surprising

that the first resolution inclusive of intersex issues, adopted within the Council of

Europe setting, called on member states to: “undertake further research to increase

knowledge about the specific situation of intersex people”.

To address this knowledge gap, the EU Agency for Fundamental Rights (FRA) has

carried out initial research about some aspects of the situation of intersex people

in EU member states in light of the update of their 2010 legal comparative report

on LGBT people. The results of that research, to be published in 2015, are expected

to provide European and national policymakers with the first comparative dataset

on the matter. The two topics addressed are the coverage of intersex people in

non-discrimination legislation and the national frameworks regulating surgical and

medical interventions performed on intersex people. Some of the data provided by

the FRA is already referred to in this paper.

It is to be noted that when it comes to the human rights of intersex people, research

from the pioneering work of the New Zealand and San Francisco human rights com-

missions is especially useful in indicating the recurrent human rights concerns, as well

as providing access to testimonies of intersex people about their life experiences.

Human rights and intersex people

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Likewise, the opinions published by the German and Swiss ethics councils as well as

the Australian Senate’s inquiry on the topic are essential sources for the identification

of ethical problems and possible responses.

More in-depth research is urgently needed and should be encouraged to ensure that

discrimination and other human rights breaches experienced by intersex people are

adequately addressed through legislative and policy frameworks.

In the preparation of this issue paper, the Commissioner for Human Rights con-

sulted intersex people, hoping to ensure that the community is involved in both

the data collection process and in human rights protection efforts at the outset.

Additionally, the Commissioner consulted with established experts from different

fields – including law, social science and paediatric medicine – who favour a human

rights-based approach.

Introduction

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Chapter 2

Medicalisation

of intersex people

2.1. Reassigning sex

n the 19th century, when scientists believed that homosexuality was the result of

“sexual inversion”, hermaphrodites were considered as potential homosexuals or

“inverts”. In light of the deeply entrenched negative attitudes towards homosexua-

lity in western society at the time, the desire to “correct” intersex people’s “atypical”

sex was driven by a crude desire to eradicate ambiguity and prevent homosexuality,

rather than a genuine concern for the well-being and best interest of intersex people.

Current approaches to reassigning or “fixing the sex” of intersex people find their root

in the science of the 1950s, when particular attention was given to issues of sexual

difference, gender and sexual orientation. John Money and his colleagues Joan and

John Hampson from Johns Hopkins University focused their studies on sexual identity

and the biology of gender. Their research into intersex people stemmed from their

interest in identifying the “normal” development patterns of the two sexes. They con-

cluded that gonads, hormones and chromosomes did not automatically determine

a child’s “gender role”, and that therefore, “mixed-sex children” could be assigned to

the “proper gender” early in their childhood and be nurtured within that gender

role provided the appropriate behavioural interventions ensued. Money believed

that the best results from such assignments were achieved when the babies were

not older than around two years of age.

Money gained increased notoriety following his intervention in the case of David

Reimer (originally named Bruce), a boy who, after his penis was accidentally burnt

off during a botched circumcision, was transitioned into and raised as a girl (Brenda),

beginning at the age of 22 months. Money initially reported the case as a success, and

he continued to follow the case annually for a decade. During that time, his view of

the malleability of gender became the dominant viewpoint among physicians and

doctors, and led to the growing popularity of sex reassignment surgeries. However,

during his teen years Reimer transitioned back to his male state, indicating that,

in spite of the dresses that he was made to wear and the oestrogen that he was

administered, he never felt female. Plagued by the deep psychological trauma of

this experience, he committed suicide in 2004 at the age of 38.

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In spite of the negative outcome of David’s case – which was only first revealed

in 1997 – Money’s theory had a disproportionate impact on medical procedure

regarding intersex treatment, and continues to inform the medical practices that

affect intersex newborns today. The prevailing medical opinion is that ambiguous

sex can and should be “fixed”, and in fact, genital surgeries on intersex babies have

become routine in spite of the fact that they are rarely medically necessary. Emphasis

is placed on the newborn’s ability to pass for one sex or the other, thus meeting social

expectations, rather than on the child’s best interests and welfare. For example, male

newborns with penises smaller than 2 cm considered “too small” are “assigned the

female gender and reconstructed to look female”, while clitorises larger than 0.9 cm

are considered “too big” and are reduced in size. Additionally, a greater number of

intersex children are transitioned to a female sex since “a functional vagina can be

constructed in virtually everyone [while] a functional penis is a much more difficult

goal.” Individuals with CAH and XX chromosomes are often not considered intersex

and as a result are routinely assigned a female sex (or “gender disambiguated”)

through a number of treatments to preserve their possible fertility regardless of

their bodily integrity or future male or non-binary gender identity.

Intersex foetuses are also within the reach of medical intervention. In an effort to

prevent the “development of ambiguous genitalia, the urogenital sinus, tomboyism,

and lesbianism” mothers who are predisposed to give birth to XX-CAH babies are

often administered dexamethasone. This occurs despite clear indications that expo-

sure to the drug “in preterm infants is associated with increased aortic arch stiffness

and altered glucose metabolism in early adulthood” – in other words, increased

risk of heart disease and diabetes. Other intersex foetuses are selectively aborted

for no other reason than their sex characteristics; in some variations (e.g. 47, XXY),

the termination rate may reach 88% on the basis that these variations supposedly

represent “major genetic defects”.

Notwithstanding the significant change in attitudes since the 1950s regarding sexuality

and gender diversity, it seems that the medical field often rejects the voices of intersex

people harmed by surgery. In 1969, Christopher Dewhurst and Ronald Gordon argued:

“One can only attempt to imagine the anguish of the parents. That a newborn should

have a deformity ... [affecting] so fundamental an issue as the very sex of the child ...

is a tragic event which immediately conjures up visions of a hopeless psychological

misfit doomed to live always as a sexual freak in loneliness and frustration.” They then

added that, “fortunately, with correct management the outlook is infinitely better than

the poor parents – emotionally stunned by the event – or indeed anyone without

special knowledge could ever imagine”. The same line of thought continues today. In

2003, in an introduction to their journal article on babies with ambiguous genitalia,

authors Low and Hutson wrote: “Next to perinatal death, genital ambiguity is likely

the most devastating condition to face any parent of a newborn.”

In a report presented to the Parliamentary Assembly of the Council of Europe (PACE),

Rapporteur Marlene Rupprecht confirmed the occurrence of routine surgeries and

medical interventions, but contradicted the claimed benefits, stating:

Different empirical studies in Germany have shown that until now 96% of all intersex

persons across different categories had received hormonal therapy. 64% of persons

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concerned had received a gonadectomy, 38% a reduction of their clitoris, 33% vaginal

operations and 13% corrections of their urina[ry] tract. Many had been submitted to a

series of operations and were confronted with post-operative complications. Relevant

treatment was traumatising for them and often involved humiliating procedures such

as being exposed to large groups of medical professionals and students studying this

curious phenomenon. For many, the interventions linked to their syndrome had long-

term effects on their mental health and well-being.

This view is further supported by testimonies found amongst others in reports of the

New Zealand and San Francisco human rights commissions and the documentary

Intersexion,

which document the traumatic experiences of intersex people’s suffering

following medical interventions without their consent.

Amongst these testimonies of trauma and pain is the experience of Christiane Völling,

who was born in 1960 in Germany with “indeterminate external genitalia” and was

raised as a boy. In her autobiography, Völling stated:

The castration [removal of internal testes] that I suffered and the paradoxical

administration of high-dose testosterone considered as necessary resulted in physical

and psychological damage such as hot flashes, depression, sleeping disorders, early

osteoporosis, the disappearance of my sexuality and my reproductive capacity, trauma

linked to the castration, lesion of the thyroid glands, change in my brain’s metabolism

and my bone structure as well as many other secondary effects and lesions. The taking

of testosterone has caused the development of a typical male hair pattern, a masculine

beard, the loss of all my hair linked to the impact of the androgens, a masculinisation

of my previously feminine voice, the masculinisation of my facial features and the

production of a male anatomy despite female predispositions. The male genitalia

surgically constructed have caused irreversible damage such as chronic urinary infections,

disorders of urination, strictures and scarring. These interventions have made me lose

all my innate feeling of belonging to a sex and all sexual behaviour.

Ms Völling only discovered what had happened to her following an unrelated inci-

dent during which a questionnaire on intersex issues was passed on to her in 2006,

almost 30 years after the intervention.

Similarly, Tiger Howard Devore complains about the “masculinising” treatment that

he received regarding hypospadias, stating that his childhood was filled with pain,

surgery, skin grafts, and isolation, adding: “And I still have to sit to pee.” For him, “[i]t

would have been just fine to have a penis that peed out of the bottom instead of

the top, and didn’t have the feeling damaged”.

The feminising procedure of vaginoplasty, i.e. creating a vaginal opening, can be

both painful and psychologically scarring. When it is performed in early child-

hood, the neo-vagina must be kept open using a dilator, which is usually inserted

regularly by the child’s mother. This procedure is repeated throughout childhood

and intersex people have stressed that it has been extremely painful and akin

to a form of rape. Some parents have had the impression of committing rape on

their child. The procedure may have to be continued later on in life as described

by intersex people:

In adolescence, if the

“

girl

”

wishes to continue to have a cavity, new operations have to

be carried out and it now becomes her turn to dilate herself for the rest of her life with

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a replica of the member which was taken away from her in early childhood without it

ever being revealed to her that she was castrated. Even if, by chance, the medical team

has matched the person’s body with her gender identity, she will go through living

hell with this badly made body and will often abandon the regular dilations, have no

sexual relations and experience many urinary problems including, in the worst cases,

incontinence.

The psychological distress caused by the negative outcomes of surgery can result

in self-harming and suicidal behaviour. A study published in 2007 found that “[t]he

prevalence rates of self-harming behaviour and suicidal tendencies in the sample of

persons with DSD were twice as high as in a community based comparison group

of non-traumatized women, with rates comparable to traumatized women with a

history of physical or sexual abuse”. Moreover, “[w]ithin the total sample, the subgroup

of persons with gonadectomy was significantly more distressed, with depression

being particularly increased”.

Some intersex people, such as Hida Viloria, the Director of OII-USA, have managed

to escape medical intervention and have had no negative impacts as a result of the

lack of surgery. On the contrary, Viloria says she is “very lucky to have escaped the

‘corrective’ surgeries and/or hormone treatments ..., because [her] father went to

medical school before these practices began (in the mid-late ’50s), and knew that

you shouldn’t operate on a baby unless it’s absolutely necessary”. She adds that she

has become “an activist after hearing that doctors believed that intersex people

would be unhappy if they did not receive ‘normalising’ treatments” and she wanted

to voice that she was very happy she did not receive such unwanted procedures.

2.2. Intersex in medical classifications

As was the case with homosexuality and as is still the case with trans identities,

variations in sex characteristics of intersex people are currently codified in medical

classifications as pathologies or disorders, usually referred to as “disorders of sex

development” (DSD). The 2006 “Consensus statement on the management of intersex

disorders” proposed a new medical classification system based on removing label-

ling and defining the situation of intersex people more clearly for patients, family

members and medical practitioners alike. It was intended to introduce the best

standards of care for people affected by DSD. However, in spite of its stated goal, the

result was that additional decision-making powers over the bodies of intersex infants

were provided to medical practitioners and parents. In addition to many intersex

people finding the term “disorder” stigmatising, Morgan Holmes has noted that the

terminology shift “reinstitutionalise[d] clinical power to delineate and silence those

marked by the diagnosis”.

Currently, both the World Health Organization’s (WHO) International Classification

of Diseases (ICD) and the American Psychologists Association’s (APA) Diagnostic

and Statistical Manual of Mental Disorders (DSM) classify intersex conditions as

pathologies in their nomenclatures. The fifth edition of APA’s DSM published in 2013

has replaced the term “gender identity disorder (GID)” with “gender dysphoria”. The

term now includes intersex people who were assigned a sex at birth which did not

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correspond with their gender. In her reaction to this development, Anne Tamar-

Mattis, Executive Director of Advocates for Informed Choice (AIC) asked: “If the child

later decides that the guess [of the doctor] was wrong, is that a sign that something

is wrong with the child?”

The WHO’s ICD is also undergoing a process of revision. In fact, a new draft version of

the ICD, the ICD-11 (currently in its Beta draft), is presently being consolidated and

its formal adoption is expected in 2017. The two sections of particular concern for

intersex people within the current Beta draft version, mainly due to their inclusion

of DSD classifications, are sections 5 (Endocrine, nutritional and metabolic diseases,

especially subsection: “Endocrine diseases”) and 20 (Developmental anomalies,

especially subsections: (i) “Multiple developmental anomalies and syndromes”;

(ii) “Chromosomal anomalies, excluding gene mutations”; and (iii) “Balanced rear-

rangements and structural markers”).

In 2011, the World Professional Association for Transgender Health (WPATH) included

DSD for the first time in its 7th version of the Standards of Care. This was lambasted as

“an act of breathtaking hypocrisy” by OII Australia, as WPATH included pathologising

language and treatments for intersex people despite having previously stated that

it considered the pathologising language surrounding trans people unhelpful.

It is worrying that the gap between the expectations of human rights organisations

of intersex people and the development of medical classifications has possibly wid-

ened over the past decade. This raises serious questions with regard to the medical

profession’s ability to help intersex people attain “the highest possible level of health”

that they have a right to.

2.3. Acquisition of parental consent

To this day, medical and surgical treatment of intersex infants and minors rests on

the belief that such treatment is necessary and desirable both for society and the

people involved. Parents of intersex children are thus asked to provide their proxy

consent to the treatment. However, recent research has demonstrated that parents

are often ill-informed and impressionable, and are not given adequate time or options

necessary to provide fully informed consent. Research has demonstrated that par-

ents who are provided with medicalised information are almost three times more

likely to consent to surgery than those who receive more broadly-based, including

psychological, information. Medical professionals may be quick to propose “correc-

tive” surgeries and treatments aiming to “normalise” the sex of the child even when

such surgeries are unnecessary and merely cosmetic. This raises serious questions

as to how the consent of parents is sought and under what premise. One mother of

twins recounted that she can see how parents can be swayed, as doctors led her to

question herself “because of how adamant they were”.

Additionally, as highlighted in Chapter 1, one’s gender does not necessarily develop

in conformity with one’s assigned sex. In the case of intersex people, estimates of

assigning the wrong sex to them vary between 8.5% and 40%. These children end up

rejecting the sex they were assigned at birth demonstrating the major infringements

of their psychological integrity.

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Eric Schneider refers to the following testimony that he received from an intersex man

whose mother was specifically asked by medical practitioners to raise him as a girl:

I was assigned female at birth but very quickly, it was clear that my behaviour tended

to be that of a male. Alongside the surgery, my parents were strongly advised to bring

me up in a manner which was geared more to femininity. This began with the toys and

the clothes they chose for me and continued with moving me from a mixed school to

a school for girls, carefully monitoring my recreational activities with the boys in the

neighbourhood (no football or so-called boy’s games) and registering me for so-called

girl’s extra-curricular activities (such as knitting and sewing). Despite all this, my male

identity remained. During this period, my Mum was accused by medical professionals

of not being strict enough. When I was ten or eleven, my Mum saw that I was unhappy

and above all lonely because I did not have any friends, and slackened the reins a little,

which allowed me to make new contacts. Except for school, she gradually respected

my choices more and more but it was a long road. I’ve forgiven her now as I know she

was only following the practices of the time and it was impossible to find any other

information (through the Internet, books or the media). Our relationship was sorely

tested when I learnt the truth about my intersexuality. The fact that I was intersex did

not shock me as much as finding out that I had been lied to all my life, and although I

have forgiven my mother our relationship was knocked back by this.

In 2006, Sarah Graham, an intersex woman, wrote the following testimony about

her experience:

When I was eight, a gynaecologist told my parents this devastating news: that I had a

very rare genetic condition and that if my ovaries weren’t removed I would develop

cancer when I reached puberty and die. Nearly 20 years later I discovered that my

doctors had lied to my parents and me. And this wasn’t a one-off – it was standard

policy (until the mid-1990s) to hide the truth about all conditions like mine. I was 25

when I found out the extent of the cover-up, and the shock of suddenly being told the

true nature of my diagnosis – with no support and after being systematically lied to for

so many years – nearly killed me. I went into an emotional meltdown.

Her testimony indicates that irreversible sex assignment surgery and sterilisation

are often performed without the fully informed consent of the parents, let alone

the consent of intersex persons themselves.

However, the Swiss National Advisory Commission on Biomedical Ethics (NEK-CNE)

warns that one cannot assume that parents will always endeavour to promote

their child’s welfare in such a situation, even when they are not put under undue

pressure by medical practitioners. It is thus important that the emotionally chal-

lenging situation is dealt with professionally to ensure that “a normal emotional

attachment [is] established between [the parents and the child]”. They also pro-

pose that parents should be relieved of any time or social pressures so that in the

event that any decisions need to be made, they will arrive at them after “careful

considered decision making”.

Parents can build a very close bond with an intersex child, and strive to protect the

child’s integrity. In a case that reached the courts in the United States in 2013, Mark

and Pam Crawford, the parents of M.C. (an adopted child), sued North Carolina

over a surgical procedure that was consented to, alleging that “the state of South

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Carolina violated M.C.’s constitutional rights when doctors surgically removed his

phallus while he was in foster care, potentially sterilizing him and greatly reducing,

if not eliminating, his sexual function”. Pam Crawford noted that she “was really sad

that that decision had been made for him,” and that “it’s become more and more

difficult just as his identity has become more clearly male. The idea that mutilation

was done to him has become more and more real. There was no medical reason that

this decision had to be made at that time.”

2.4. Changing perspectives

An emerging shift in the medical perspective towards intersex people is perceptible

among a number of practitioners. In its 2011 Opinion, NEK-CNE clearly indicated

that “[a]n irreversible sex assignment intervention involving harmful physical and

psychological consequences cannot be justified on the grounds that the family,

school or social environment has difficulty in accepting the child’s natural physical

characteristics”. It thus recommended that any irreversible sex assignment treatment

should be deferred until “the person to be treated can decide for him/herself”, as

long as no urgent intervention was necessary to prevent severe damage to the

person’s body or health. In its view, a child “attains capacity between the ages of

10 and 14 years” and even before this age children should be able to participate in

decision making in an age-appropriate manner. NEK-CNE also stressed the need to

protect the child’s integrity, indicating that “[p]rofessional psychosocial counselling

and support should be offered free of charge to all affected children and parents”.

Unlike many others in his profession, the paediatric surgeon Mika Venhola has

denounced surgical interventions of intersex people during childhood. In an interview,

he stated: “When I was training to become a paediatric surgeon I was taught how

to do these, ‘corrective’ cosmetic surgeries ... but when I was doing my first intersex

surgery due to cosmetic reasons I felt it was such a huge human rights violation, and

especially a violation of children’s rights, that I swore I would never do this when I

became independent and could decide for myself. And I have never done it, since

then.” He notes that a sizable group of intersex people who have been operated upon

are unhappy with the outcomes, and believes that their voices should be adequately

heard by other surgeons. Venhola believes that “the gender of the [intersex] child

is an educated guess and entails a great risk of error. The atypical genitals of babies

with intersex conditions are not a health risk, but early genital surgery is performed

for aesthetic or social purposes. To stress his point, he rhetorically asks: “Why operate

on the child’s body if the problem is in the minds of the adults?”

In a recent ground-breaking UN interagency statement issued by the WHO in 2014,

several UN institutions addressed the fact that “in some countries, people belonging

to certain population groups, including ... intersex persons, continue to be sterilized

without their full, free and informed consent”. It noted that such sterilisation prac-

tices violate fundamental human rights, including the right to health, the right to

information, the right to privacy, the right to decide on the number and spacing of

children, the right to found a family and the right to be free from discrimination; as

well as the right to be free from torture and other cruel, inhuman and degrading

treatment or punishment.

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The document adds that

Intersex persons may be involuntarily subjected to so-called sex-normalizing or other

procedures as infants or during childhood, which, in some cases, may result in the

termination of all or some of their reproductive capacity. Children who are born with

atypical sex characteristics are often subjected to cosmetic and other non-medically

indicated surgeries performed on their reproductive organs, without their informed

consent or that of their parents, and without taking into consideration the views of

the children involved. As a result, such children are being subjected to irreversible

interventions that have lifelong consequence for their physical and mental health.

The statement recommends that in the absence of medical necessity, where the

physical well-being of the intersex person is in danger, treatments that result in steri-

lisation should be postponed until the “person is sufficiently mature to participate in

informed decision making and consent”. This statement points towards an emerging

consensus on intersex recognition within the UN system. It is timely in view of the

current ICD revision and should facilitate a human rights approach in the process.

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Chapter 3

Enjoyment of

human rights

3.1. Universality of human rights

uman rights are universal and indivisible, and hence apply to everybody,

including intersex people. The Universal Declaration of Human Rights (UDHR)

affirms that all human beings are born free and equal in dignity and rights and

that everyone is entitled to all the rights and freedoms set forth in the instrument,

without distinction of any kind, such as race, colour, sex, language, religion, politi-

cal or other opinion, national or social origin, property, birth, or other status. The

European Convention on Human Rights (ECHR) (ETS No. 5) also protects everybody

and contains an open-ended list of prohibited grounds of discrimination.

In spite of the fact that no specific provision currently refers to intersex people, the

rights contained in international human rights treaties apply to all people, and thus

to intersex people through the conventions’ open-ended non-discrimination clauses.

This interpretation was confirmed by the UN Committee on Economic, Social and

Cultural Rights (CESCR), with regard to the International Covenant on Economic,

Social and Cultural Rights (ICESCR). The committee stated that “other status” as rec-

ognised in Article 2(2) includes “gender identity ... as among the prohibited grounds

of discrimination”, adding that “persons who are transgender, transsexual or intersex

often face serious human rights violations, such as harassment in schools or in the

workplace”.

Inclusion of the ground of sex or gender is important and useful if it is not simply

framed in terms of the binary female/male dichotomy which would restrict its

coverage of intersex people. In its 1996 decision in the case of

P v. S and Cornwall

County Council

as well as two other subsequent judgments, the Court of Justice of

the European Union (CJEU) held: “that the scope of the principle of equal treatment

for men and women cannot be confined to the prohibition of discrimination based

on the fact that a person is of one or other sex. In view of its purpose and the nature

of the rights which it seeks to safeguard, it also applies to discrimination arising

from the gender reassignment of a person.” That principle is now established and

included in EU sex equality legislation. Building on the court’s reasoning, Schiek,

Waddington and Bell argue that there is “a close relation between intersexualism

and gender or sex, for which reason it would not be illogical to classify distinctions

based on intersexualism or hermaphroditism as being gender based”.

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3.2. Key human rights at stake

3.2.1. Right to life

The right to life is established under Article 3 of the UDHR, Article 6 of the International

Covenant on Civil and Political Rights (ICCPR), and Article 2 of the ECHR. Article 6

of the Convention on the Rights of the Child (CRC) further establishes the duty of

States Parties to ensure to the maximum extent possible the survival and develop-

ment of the child.

Intersex people’s right to life can be violated in discriminatory “sex selection” and

“preimplantation genetic diagnosis, other forms of testing, and selection for particular

characteristics”. Such de-selection or selective abortions are incompatible with ethics

and human rights standards due to the discrimination perpetrated against intersex

people on the basis of their sex characteristics.

The Council of Europe Convention on Human Rights and Biomedicine (ETS No. 164)

prohibits discrimination on the grounds of a person’s “genetic heritage” as well as

the use of techniques of medically assisted procreation “for the purpose of choos-

ing a future child’s sex, except where serious hereditary sex-related disease is to be

avoided”. The explanatory report of the convention leaves the definition of “hereditary

sex-related disease” open to the “internal law” of member states. Nonetheless, the

report raises concern with regard to genetic testing as it “may become a means of

selection and discrimination”.

While the convention has not yet been tested with regard to its applicability to

intersex, many Council of Europe institutions have already raised concerns about

the use of sex selection techniques. In its 2011 resolution on pre-natal sex selection,

PACE stressed that “the social and family pressure placed on women not to pursue

their pregnancy because of the sex of the embryo/foetus is to be considered as a

form of psychological violence” and that the practice of forced abortions should be

criminalised. Similarly, in a recent Human Rights Comment, the Commissioner for

Human Rights called for the “deeply discriminatory practice” of sex selection to be

“vigorously countered and banned in law”. The Committee of Ministers’ 2002 rec-

ommendation clearly called on member states to “prohibit enforced sterilisation or

abortion, contraception imposed by coercion or force, and pre-natal selection by

sex, and take all necessary measures to this end”.

3.2.2. Prohibition of torture and inhuman or degrading

treatment

Torture and other cruel, inhuman or degrading treatment or punishment are pro-

hibited under Article 5 of the UDHR, Article 7 of the ICCPR and Article 3 of the ECHR.

They are also prohibited under a specific 1984 UN Convention against Torture and

Other Cruel, Inhuman or Degrading Treatment or Punishment and the 1987 European

Convention for the Prevention of Torture and Inhuman and Degrading Treatment

or Punishment.

The key advocacy goal of intersex rights organisations is to end “normalising”

surgeries and other cosmetic medical treatment, which some organisations call

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“intersex genital mutilation” (IGM). In his report to the UN Human Rights Council

(UNHRC) in 2013, Juan E. Mendés, the UN Special Rapporteur on torture and other

cruel, inhuman or degrading treatment or punishment, issued a strongly worded

statement condemning non-consensual surgical intervention on intersex people

as a form of torture. His report states that “[t]here is an abundance of accounts

and testimonies of persons being ... subjected to ... a variety of forced procedures

such as sterilization, State-sponsored forcible ... hormone therapy and genital-nor-

malizing surgeries under the guise of so-called ‘reparative therapies’. These proce-

dures are rarely medically necessary, can cause scarring, loss of sexual sensation,

pain, incontinence and lifelong depression and have also been criticized as being

unscientific, potentially harmful and contributing to stigma”. The UN Committee

on the Elimination of Discrimination against Women (CEDAW) has also expressed

concern about intersex women as “victims of abuses and mistreatment by health

service providers”.

The UN Special Rapporteur on torture pointed out that intersex children are often sub-

ject to irreversible sex assignment, involuntary sterilisation and/or genital-normalising

surgery, performed without their informed consent or that of their parents “in

an attempt to fix their sex” as they fail to conform to socially constructed gender

expectations. This leaves intersex children with permanent, irreversible infertility

and causes severe mental suffering. He added that discrimination on the grounds

of sexual orientation or gender identity may often contribute to the process of the

dehumanisation of the victim, which is often a necessary condition for torture and

ill-treatment to take place.

3.2.3. Right to respect for private life

The right to respect for private life is enshrined in Article 12 of the UDHR, Article 17

of the ICCPR, Article 16 of the CRC and Article 8 of the ECHR. The right to physical

and psychological integrity is included in the protection of the right to private life.

The right to self-determination and personal autonomy is also relevant.

The right to physical and psychological integrity is particularly important in the

context of involuntary medical treatment. The European Court of Human Rights has

held that even a minor interference with the physical integrity of an individual can

be regarded as an interference with the right to respect for private life under Article

8 if it is carried out against the individual’s will. Therefore Article 8 is applicable in

many cases where the severity of interference required by Article 3 is not attained.

Furthermore, Article 8 entails a positive obligation on the part of the state to protect

the physical integrity of people within their jurisdiction.

In her report to PACE, Marlene Rupprecht points out that “[s]ex-determining operations

undertaken without the consent of the person concerned are indeed increasingly

perceived as a violation of personal rights given that the latter include the right to

live one’s life according to the subjectively perceived sexual identity.” The principle

of medical ethics “first, do no harm” should also guide all physicians whereby, what-

ever the intervention or procedure, the patient’s well-being should always be the

primary consideration.

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In 2006, the

Yogyakarta Principles,

a set of principles relating to sexual orientation

and gender identity, were developed by eminent human rights experts based on

established human rights. Principle 18 states: “No person may be forced to undergo

any form of medical or psychological treatment, procedure, testing, or be confined

to a medical facility, based on sexual orientation or gender identity. Notwithstanding

any classifications to the contrary, a person’s sexual orientation and gender identity

are not, in and of themselves, medical conditions and are not to be treated, cured

or suppressed”.

Although Article 8 of the ECHR does not contain a right to self-determination as

such, the notion of personal autonomy is an important principle underlying the

interpretation of its guarantees. Therefore, the European Court of Human Rights

has stressed that elements such as gender identification, name, sexual orientation

and sexual life fall within the personal sphere protected by Article 8. In 2013, PACE

called on Council of Europe member states to: “ensure that no-one is subjected to

unnecessary medical or surgical treatment that is cosmetic rather than vital for health

during infancy or childhood, guarantee bodily integrity, autonomy and self-deter-

mination to persons concerned, and provide families with intersex children with

adequate counselling and support”.

3.2.4. Right to health

The right to health is enshrined in Article 25 of the UDHR, Article 12 of the ICESCR,

Articles 17, 23 and 24 of the CRC, and Article 25 of the UN Convention on the Rights

of Persons with Disabilities. Within the European framework, the right is guaranteed

under Articles 11 and 13 of the revised European Social Charter.

Everyone has the right to the highest attainable standard of physical and mental

health, without discrimination. Sexual and reproductive health is a fundamental

aspect of this right, as are considerations of the person’s future development. For

intersex people, the right to health is two pronged: (i) avoiding involuntary and

unconsented treatment and interventions that have negative lifelong consequences

to their physical and mental health; and (ii) having access to general health services

that are appropriate, adequate and respectful of their bodily diversity.

In its report on involuntary and coerced sterilisation, the Australian Senate stated that:

There is frequent reference to “psychosocial” reasons to conduct normalising surgery.

To the extent that this refers to facilitating parental acceptance and bonding, the child’s

avoidance of harassment or teasing, and the child’s body self-image, there is great

danger of this being a circular argument that avoids the central issues. […] Irreversible

medical treatment, particularly surgery, should only be performed on people who are

unable to give consent if there is a health-related need to undertake that surgery, and

that need cannot be as effectively met later, when that person can consent to surgery.

In view of this, the Australian Senate recommended that “all medical treatment of

intersex people take place under guidelines that ensure treatment is managed by

multidisciplinary teams within a human rights framework. The guidelines should

favour deferral of normalising treatment until the person can give fully informed

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consent, and seek to minimise surgical intervention on infants undertaken for

primarily psychosocial reasons”.

In order to meet this goal, the UN interagency statement calls for medical protocols

to ensure that any operations that are not immediately necessary on medical grounds

only take place at an age when intersex people can give their consent and participate

actively in decisions about any treatment and sex assignment. Additionally, such

protocols need to ensure that intersex people have the right to full information about

treatments, and have access to their own medical records and history.

3.2.5. Rights of the child

In view of the fact that the most acute human rights violations against intersex peo-

ple happen during their infancy, childhood or adolescence, the rights of the child

as established in the CRC are especially relevant in upholding the human rights of

intersex people.

The set of rights, in addition to those already referred to under previous sections,

most relevant to intersex children are:

Article 3 establishing that the best interests of the child is a primary

consideration with regard to all issues affecting children;

Article 7 establishing the right to be registered immediately after birth and

have the right from birth to a name;

Article 8 establishing the right of the child to preserve their identity, including

name;

Article 12 establishing the child’s right to form and express their views freely

in all matters affecting them;

Article 13 establishing the right to freedom of expression, which right includes

the freedom to seek, receive and impart information and ideas of all kinds.

In relation to intersex children, these rights can be construed to mean that all

non-medically necessary normalisation or gender-related treatment leading to

permanent modifications to the body and possible loss of sexual function and

fertility must be expressly consented to by the child in line with their best interests,

and their ability to form and express their views regarding their body and identity.

Likewise, the registration of an immutable (or legally difficult to change) sex marker

on the intersex child’s birth certificate without regard to their gender identity may

be arbitrary and in breach of the child’s right to personal identity. Furthermore,

secrecy around their sex and the interventions that may have been performed on

their body at a young age, as well as coercion to conform to a gender that is not

congruent with their gender identity, interfere with their right to receive and impart

information and the right to express their personality.

In February 2015, the UN Committee on the Rights of the Child expressed concern

about “[c]ases of medically unnecessary surgical and other procedures on intersex

children, which often entail irreversible consequences and can cause severe physical

and psychological suffering, without their informed consent, and the lack of redress

and compensation in such cases”. The committee urged the state party concerned to

“ensure that no-one is subjected to unnecessary medical or surgical treatment during

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infancy or childhood, guarantee bodily integrity, autonomy and self-determination

to children concerned, and provide families with intersex children with adequate

counselling and support”.

In the light of such concerns, the Yogyakarta Principles calls on states to: (i) “ensure full

protection against harmful medical practices ..., including on the basis of stereotypes,

whether derived from culture or otherwise, regarding conduct, physical appearance

or perceived gender norms;” (ii) “ensure that no child’s body is irreversibly altered by

medical procedures in an attempt to impose a gender identity without the full, free

and informed consent of the child in accordance with the age and maturity of the

child and guided by the principle that in all actions concerning children, the best

interests of the child shall be a primary consideration;” and (iii) “establish child pro-

tection mechanisms whereby no child is at risk of, or subjected to, medical abuse”.

3.3. Emerging position of international organisations

Several international organisations have started addressing the human rights

concerns raised by intersex people. In 2012, the EU Commission published a report

tackling discrimination against trans and intersex people followed by training and

awareness-raising activities. The EU has also adopted a set of external action guide-

lines on the promotion and protection of human rights of LGBTI persons, including

specific attention to intersex issues.

In 2013, PACE adopted a resolution that acknowledged the human rights breaches

suffered by intersex people and called on member states to change current practices.

Subsequently, in a 2014 Human Rights Comment, the Commissioner for Human

Rights urged governments in Europe to “review their current legislation and medical

practices to identify gaps in the protection of intersex people and take measures to

address the problems”. In December 2014, the Council of Europe Sexual Orientation

and Gender Identity Unit published a major report on the situation of trans and

intersex children in Europe.

In 2013, the Inter-American Commission on Human Rights (IACHR) created a rap-

porteurship on the Rights of Lesbian, Gay, Bisexual, Trans and Intersex Persons to

address issues of sexual orientation, gender identity, gender expression, and body

diversity. The clear inclusion of “body diversity” in the mandate of the Rapporteurship

indicates the need to pay specific attention to intersex issues, although such refer-

ence was not included in the related resolution that the Organization of American

States (OAS) adopted earlier in the year.

In 2014, Navi Pillay, the UN High Commissioner for Human Rights, acknowledged

that “medically unnecessary and irreversible surgeries and sterilizations continue to

be performed on intersex children without their informed consent, causing lifelong

harm”. She proposed that the UNHRC, governments, members of parliament, national

human rights institutions, judicial actors and civil society organisations direct their

focus towards human rights breaches against LGBTI people.

These developments, along with the 2013 condemnation of non-consensual surgical

intervention on intersex people by Juan E. Mendés, the UN Special Rapporteur on

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torture, the 2014 UN interagency statement on forced, coercive and involuntary

sterilisation, as well as 2011 guidance provided by the UN High Commissioner for

Refugees (UNHCR) on treatment of LGBTI in forced displacement, clearly demonstrate

an emerging position among international and regional human rights bodies about

the urgent need to find adequate responses to the severe problems experienced

by intersex people.

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Chapter 4

Legal recognition

of sex and gender

cross Europe, an indication of sex is required for the official registration of

births, which limits the recognised sexes to the “F” and “M” dichotomy. This

requirement is based on the belief that sex is “one of the essential features of

a person’s identity” and that all people can be clearly designated as belonging to

either of the provided categories.

In turn, this requirement puts pressure on parents to render their child not only “legally

‘unambiguous’, but physically unambiguous too”. In most countries, once the sex is

recorded, it becomes difficult to amend such a record (if it is legally possible at all),

thus entailing “significant disadvantages for the person concerned”.

4.1. Registration of sex on birth certificates

The intertwining between legal requirements and medical pressure following the

birth of an intersex baby traps both the parents and their children between a rock

and a hard place. For example, a German mother recounts that, “the pressure exerted

by the registry office to […] slot one’s child into one of the two genders [builds] up

an unreasonable pressure that is only surpassed when the attending physicians

demand to consent to allegedly pressing operations at the same time. […] The

option to leave the sex/gender entry vacant for years would have let me know from

the legal side that it is absolutely appropriate to wait in this situation”.

Currently, some countries allow for the registration of the sex of the child to be

delayed in the event that the sex of a newborn cannot be immediately determined

at birth. Nonetheless, this measure is usually temporary, even in the case of an

intersex child. For example, in Belgium the sex is usually registered during the first

week and a maximum period of three months from the birth of an intersex child;

while in France a maximum period of three years is allowed in exceptional cases for

intersex births, even though, in practice, it is reported that parents tend to “have

their child assigned to one or the other sex/gender as quickly as possible”. Finland

and Portugal seem to be the only two countries that do not impose a time limit on

the registration of sex when it cannot be clearly defined.

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In Germany, following the 2009 Civil Status Regulation, the sex/gender of an intersex

newborn could be left open until it was resolved, although a birth certificate could

not be issued during this period. This limitation is reported to have led to prob-

lems regarding health insurance, parental benefits, inheritance and other issues.

Following the adoption of the 2013

Civil Status Act,

intersex children now receive

a birth certificate. However, the sex/gender marker field in the birth register is left

blank once a child has been diagnosed as being “affected by DSD”. This means that

the assignment decision is passed to the doctors and subsequently enforced by

law. Human rights practitioners fear that the lack of freedom of choice regarding

the entry in the gender marker field may now lead to an increase in stigmatisation

and to “forced outings” of those children whose sex remains undetermined. This has

raised the concern that the law may also lead to an increase in pressure on parents

of intersex children to decide in favour of one sex.

4.2. Flexibility in assigning and reassigning legal sex/gender

A case challenging the binary sex model was taken to the Regional Court of

Munich by an intersex person in 2002. In its decision in 2003, the court recog-

nised that “hermaphrodites” do occur in nature, but held that the complainant

was not a “hermaphrodite”. Furthermore, it argued that “[t]he entry of ‘intersexual’

or ‘intrasexual’ as a gender identification in the Register of Births, Deaths and

Marriages cannot be considered as an option” since according to its reasoning

“the terms do not indicate any specific gender” and “[b]iology and medicine make

the assumption that human beings belong to one of two sexes, and consider the

various forms of doubtful gender as exceptions to the rule”. Finally it dismissed

research presented by the complainant, as a “minority opinion” and argued that

a call for the inclusion of a third sex classification could not be claimed under

fundamental human rights or the German Constitution, and that its inclusion

“would lead to considerable difficulties in the defining of terms and to uncer-

tainties in the law”.

A similar case was brought in the Almelo District Court in the Netherlands around

the same time by an intersex person who did not identify as either female or male.

It was also denied twice, including by the Supreme Court which found “no general

international tendency to protect persons who are intersexual in this respect [i.e. to

be registered as belonging to neither gender]”.

In its 2012 Opinion, NEK-CNE was more sympathetic to the complainants’ demand

and people who cannot fit into the sex/gender binary. Indeed, NEK-CNE believes

that parents should not be subjected to pressure in the assignment of their child’s

sex, and recommended a review of current binary assignments of sex of those who

are not clearly identifiable as female or male, proposing three options:

the broadening of current categories, either through a third option such as

“other” or the introduction of two further categories based on the binary

classification, yet indicating uncertainty e.g. “female *” or “male *”;

the revision of the ordinance regulating civil status to remove the indication

of sex altogether; or

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the retention of the current binary categories, while introducing flexibility

and simplification of the procedure to amend the sex recorded on the civil

status register.

Of the three options, NEK-CNE favours the third as, on the one hand the “present

binary classification system ... is deeply embedded socioculturally”, while simplified

amendments “would offer the advantage of sparing (already overstrained) parents,

or the person of ambiguous sex, the need for court proceedings” relying on the

individual’s self-identified gender.

This opinion matches the demands of the Intersex Forum’s Public Statement of 2013

which call for:

“intersex children [to be registered] as females or males, with the awareness

that, like all people, they may grow up to identify with a different sex or

gender”; and

“sex or gender classifications [to be] amendable through a simple administrative

procedure at the request of the individuals concerned. All adults and capable

minors should be able to choose between female (F), male (M), non-binary

or multiple options” with the prospect that in the future such entries on birth

certificates or identification documents will become superfluous.

The 2012 Argentinean Law Establishing a Right to Gender Identity of the Person

represented a fundamental shift in international best practice regarding gender rec-

ognition based on human rights principles. While it does not go beyond the female/

male dichotomy, which may be a pitfall regarding cases of non-binary genders, it is

still very useful as a legal model for the recognition of intersex people who identify

as “F” or “M” irrespective of the sex they were assigned at birth. The law provides all

people with the right to recognition of their gender identity, including the ability

to “request that the recorded sex be amended, along with changes in first name

and image, whenever they do not agree with the self-perceived gender identity”.

Furthermore the law clearly states that “[i]n no case will it be needed to prove that

a surgical procedure for total or partial genital reassignment, hormonal therapies or

any other psychological or medical treatment has taken place” for a change in the

legal sex/gender to be effected; at the same time, it empowers “[a]ll persons ... with

the aim of ensuring the holistic enjoyment of their health” and allows “access [to] total

and partial surgical interventions and/or comprehensive hormonal treatments to

adjust their bodies, including their genitalia, to their self-perceived gender identity,

without requiring any judicial or administrative authorisation.”

In 2014, Denmark became the first European country to adopt a gender identity law

based on the same self-determination principle whereby an individual above the age

of 18 may obtain a change in legal sex on the basis of her/his gender declaration,

without the need for verification by a third party.

Interesting legal proposals have been tabled in Luxembourg and Malta, where the

parents’ ability to omit reference to the sex of the child on birth certificates is being

considered. In Luxembourg, Draft Bill No. 6568 on Reform of Filiation will allow for

the leaving out of the sex/gender marker of a child on childbirth certificates: “The

bill includes changes on granting legal recognition for intersex or transsexual indi-

viduals and that could guarantee equality of all individuals, regardless of biological

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sex, gender identity and gender expression.” Similarly, the Maltese bill entitled the

Gender Identity, Gender Expression and Sex Characteristics Act that was tabled in

the Maltese Parliament allows parents or guardians to postpone the inclusion of a

sex marker on the birth certificate until the child’s gender identity is determined.

The bill also allows for changes to the sex/gender marker to align it with one’s gen-

der identity at any point in one’s life following a simple administrative procedure.

4.3. Non-binary sex/gender marker on identification documents

Currently, the sex/gender on identification documents in Europe is required and

limited to “F” or “M” only. The sole exception is Germany, as it omits any reference to

sex/gender on its identity cards. When it comes to passports, the International Civil

Aviation Organisation (ICAO) has allowed for sex to be registered as “F”, “M” or “X”

(i.e. “unspecified”) since 1945. However, following EU harmonised rules regarding

the passports’ information page, the sex entry included on the passports of all EU-28

member states has remained limited to “F” or “M” alone.

This contrasts with countries such as Australia, Malaysia, Nepal, New Zealand and

South Africa that already allow for “X” as another sex entry on passports, while the

Indian passport application form allows for three gender categories: “Female”, “Male”

and “Others”. Of note, the Australian Passports Office’s Sex and gender diverse pass-

ports applicants: Revised policy, provides flexibility as it makes it clear that “[b]irth

or citizenship certificates do not need to be amended for sex and gender diverse

applicants to be issued a passport in their preferred gender. A letter from a medi-

cal practitioner certifying that ... they are intersex and do not identify with the sex

assigned to them at birth, is acceptable.” Furthermore, the Australian Government’s

Guidelines on the recognition of sex and gender standardise the evidence required

for a person to establish or change their sex/gender in personal records held by

Australian Government departments and agencies. When sex is recorded, the guide-

lines require that “individuals [are] given the option to select M (male), F (female) or

X (Indeterminate/Intersex/Unspecified).”

In 2007, a Nepali Supreme Court ruling proclaimed that “third gender” people have

the right to enjoy the fundamental human rights guaranteed to all citizens, thus

striking down a policy that denied citizens the ability to register in a sex other than

female or male. In accordance with the ruling, the Nepalese Government issues

citizenship certificates recognising a third gender, even though until 2011 only two

such certificates had been issued. The delay in the issuance of more such certificates

is claimed to be due to legal and technical difficulties.

However, further reflection on non-binary legal identification is necessary. Mauro

Cabral, Global Action for Trans Equality (GATE) Co-Director, indicated that any recog-

nition outside the “F”/”M” dichotomy needs to be adequately planned and executed

with a human rights point of view, noting that: “People tend to identify a third sex

with freedom from the gender binary, but that is not necessarily the case. If only trans

and/or intersex people can access that third category, or if they are compulsively

assigned a third sex, then the gender binary gets stronger, not weaker”.

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Chapter 5

Non-discrimination

and equal treatment

5.1. Experience of discrimination

ntersex people are vulnerable to discrimination and abuse in all spheres of life. Their

invisibility and the general lack of knowledge about intersex issues in society can

result in the perpetration of discrimination with impunity especially in the absence

of specific non-discrimination guarantees. Dan Christian Ghattas states that “[i]n all of

the countries examined [in his study], intersex is treated as a taboo, and intersex indi-

viduals encounter prejudices. ... The[ir] experiences range from structural and verbal

discrimination to physical violence and life-threatening situations”. Perpetrators usually

discriminate on the basis of what they perceive as gender non-conformity on the part

of intersex people, in behaviour, appearance or in both. Homophobia may also be at

play as awareness of intersex people remains low. Visible physical differences such as

androgyneity or sex characteristics usually attributed to the sex considered opposite

to the one assigned at birth (e.g. breast development on males) may serve as a pretext

for bullying and exclusion in schools, as well as underemployment or dismissal later

in life. Additionally, intersex individuals may be vulnerable to hate speech and/or

physical violence “in instances in which they either disclose their intersex status or if

their behaviour and/or outer appearance do not match stereotypical notions of male

and female norms”.

The discriminatory medical practices extensively covered throughout this document

have a secondary impact later in life, as intersex people may refuse to consult a doc-

tor even in the case of serious problems due to lack of trust in medical practitioners

in general. Their fears may be justified as intersex people are subject to direct and

indirect discrimination in access to health care services. AIC reported that intersex

people are sometimes denied care once their atypical anatomy is known. They high-

lighted one extreme case when an adult intersex man died of vaginal cancer in the

United States after he was refused treatment at several health centres due to his sex

characteristics, specifically due to his having a vagina. Intersex people may also be

exposed to indirect discrimination following gendered policies which deem that certain

medical treatment may only be available to one or the other sex (e.g. ovarian cancer

treatment), disregarding intersex people who may be registered under another sex,

but still need it. Similar problems may be experienced with regard to health insurance

coverage, especially private insurance, where exclusion criteria are permissible when

medically certified conditions exist. AIS Group Australia Inc. reports that people “with

genetic conditions have been denied personal insurance or been quoted premiums

that are prohibitively high because of pre-conceived ideas about their condition”.

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Sport is the field

par excellence

in which discrimination against intersex people has

been made most visible. The reader may remember the case of Caster Semenya,

who in August 2009 had won a gold medal in the 800 m women’s race of the Berlin

12th IAAF World Championships in Athletics. Following her success, however, she

was globally outed as intersex and all eyes were turned on her, while her world was

turned upside down, to the point that she was placed on suicide watch. Following

“gender testing” by the International Association of Athletics Federations (IAAF), she

was withdrawn from international competition until July 2010 when the Association

cleared her return to competition. Other athletes before and after Semenya have

faced a similar fate.

International sports bodies, such as the International Olympic Committee (IOC) and

the International Federation of Association Football (FIFA) also have guidelines for

sex verification. These gender guidelines are problematic, as Hida Viloria and Maria

Jose Martínez-Patino have pointed out: the IAAF and the IOC “propose that their new

policies for women with high levels of testosterone ... are implemented to ensure

fairness ‘for all female athletes’, yet fairness to the women they will directly impact is

not considered”. Additionally, Rebeca Jordan-Young

et al

question the ethical nature

of these policies, which induced “four young athletes (aged 18-21) from developing

countries [... to undergo a] gonadectomy and ‘partial clitoridectomy’” in order to be

compliant with the guidelines and to be able to compete.

5.2. Current legislative responses to discrimination and violence

Over the past decade, some inroads have been made in terms of recognising the

need to specifically protect intersex people in equal treatment legislation. For the

most part, the countries that made a leap in this direction interpreted the grounds

of “sex” to implicitly or explicitly cover intersex people along with women and men.

This approach had the advantage that national legal frameworks already included

the ground of sex, and thus its extension to cover intersex was relatively easier than

the introduction of a new ground.

Recently, however, that approach was put into question. Much in the same way that

the development of terms such as “sexual orientation” and “gender identity” have

provided the LGBT community with powerful tools to increase visibility and foster

equality, intersex people would probably benefit from a similar specificity of the

prohibited ground of discrimination. However, at this stage there is no international

agreement on what the new term would be, even though both “sex characteristics”

and “intersex status” are both in use.

The first country in the world to include an express reference to intersex in its

equality legislation was South Africa. Through the

Judicial Matters Amendment

Act 2005

amendments were made to the

Promotion of Equality and Prevention of

Unfair Discrimination Act 2000,

stating that: “‘[I]ntersex’ means a congenital sexual

differentiation which is atypical, to whatever degree”; and that “‘sex’ includes

intersex”. This law was truly ground-breaking, as apart from it being the first of

such laws, it was formulated in a way as to cover all intersex people within its

definition without exception.

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Germany followed suit a year later. Upon the adoption of the General Equal Treatment

Act – which was primarily aimed at transposing EU equality legislation into national

legislation – “transsexual” and “intersexual” people were implicitly included within the

definition of “sex”, in line with Germany’s interpretation of CJEU jurisprudence. The

ground of “sexual identity” mentioned in the German legislation may be useful too.

Austria’s Ombudperson for Equal Treatment argues that the same applies for Austria,

where the term “gender” in the Equal Treatment Act would also cover intersex.

Another legal approach has been to associate intersex status with gender identity or

gender expression. Recent modifications to the Finnish Gender Equality Act, which

came into force in January 2015, expressly state that the Act’s new provisions on gen-

der identity and gender expression also apply to discrimination related to a person’s

physical sex characteristics which are not unequivocally male or female. The Finnish

Ombudsman for Gender Equality had previously called for implementing the earlier

provisions of the Gender Equality Act to cover trans and intersex people while also

advocating express modifications to the law. The Scottish Offences (Aggravation by

Prejudice) (Scotland) Act of 2009 included protection against hate crime on the basis

of actual or presumed “intersexuality” within the meaning of “transgender identity”.

In 2012, the Autonomous Basque Community in Spain adopted a law on non-dis-

crimination on the grounds of gender identity and for the recognition of trans

people, including coverage of intersex people. While the law primarily addresses the

needs of trans people, Article 6(4) establishes that intersex individuals are entitled to

access the following services: “a) Information, guidance and advice, including legal

assessment, to intersex individuals and their families in order to provide for needs

specifically related to their status”. The law also aims to “promote the defence of

[intersex] rights and fight all sorts of discrimination suffered within the social, cul-

tural, labour or educational scope. Furthermore […] participation in public services

of associations of intersex people, and organisations working in the field of gender

identity, will be promoted”.

The Australian federal law entitled Sex Discrimination Amendment (Sexual Orientation,

Gender Identity and Intersex Status) Act 2013 broke away from the extension of the

definitions of “sex” or “gender identity” by introducing an intersex-specific ground (i.e.

“intersex status”) for the first time. It defines intersex status as “the status of having

physical, hormonal or genetic features that are: (a) neither wholly female nor wholly

male; or (b) a combination of female and male; or (c) neither female nor male”. The

act considers that a person (the perpetrator) discriminates against another person

(the aggrieved person) on the grounds of intersex status if the discriminator treats

the aggrieved person less favourably than a person who is not of intersex status,

by reason of “(a) the aggrieved person’s intersex status; or (b) a characteristic that

appertains generally to persons of intersex status; or (c) a characteristic that is gen-

erally imputed to persons of intersex status”.

The bill entitled the Gender Identity, Gender Expression and Sex Characteristics Act

that was presented for its first reading in the Maltese Parliament in October 2014,

defines “sex characteristics” as “the chromosomal, gonadal and anatomical features

of a person, which include primary characteristics such as reproductive organs

and genitalia and/or in chromosomal structures and hormones; and secondary

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characteristics such as muscle mass, hair distribution, breasts and stature”. It provides

protection on this ground in equal treatment legislation and in anti-hate crime and

“hate speech” provisions in the Criminal Code. Importantly, the bill makes “medical

intervention which is driven by social factors without the consent of the individual

concerned” a violation of the law.

All these different national and regional approaches to tackling discrimination and

violence against intersex people have their value, and some may fit specific legal

traditions better than others. Whatever the approach, however, legal certainty

needs to be guaranteed. In this respect, a specific provision for intersex, such as “sex

characteristics” or “intersex status”, has the advantage of playing an educational role

for society at large as well as providing visibility to this marginalised group. In the

absence of a specific term, an authoritative legal interpretation of the applicability

of the category of sex/gender would appear necessary.

In the same vein, it is also important that the material scope of the legislation tackling

discrimination covers all spheres of life, and that the framework tackling hate crimes

and “hate speech” also expressly covers violence against intersex people.

5.3. Awareness raising, social inclusion and support services

So far, virtually all awareness-raising initiatives on intersex issues have been carried

out by intersex organisations at the grassroots level. Among these initiatives is the

designation of 26 October (since 1996) as Intersex Awareness Day, as well as various

activities which are carried out annually to end shame, secrecy and unwanted genital

cosmetic surgeries on intersex children during the week leading up to 8 November,

which has been declared the Intersex Day of Remembrance. Intersex people have also

produced an array of materials in different media to draw attention to their plight.

Collaborations between public institutions and intersex organisations are very rare,

but do exist. For example, the portal www.meingeschlecht.de was launched through

funding received from the German Federal Anti-Discrimination Agency and others,

in collaboration with trans, genderqueer and intersex organisations. Its aim is to

strengthen the self-confidence of intersex people by making their real life situations

more visible. It targets young people with the goal of providing information and

promoting the idea that physical and sexual diversity is normal. The portal provides

texts, images and videos of young people who talk about their experiences as trans,

genderqueer and/or intersex and their perception of themselves, and provides

points of contact throughout Germany. During 2014, three German constituent

states funded intersex-specific activities carried out by NGOs.

Interesting initiatives have also been developed in Austria. The Austrian Advertising

Council has stated in its document on gender discrimination “that advertisements

are discriminatory because of gender, if they are likely to depreciate persons not

living up to common understandings about belonging to one of the sexes (like

intersexual persons or transgender persons)”. Additionally, a “brochure on sexual

education of children aged 6 to 12 also contains information on intersexuality as well

as an introduction on how to conduct an exercise with children on intersexuality”.

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Further afield, policy developments coming from Australia can serve as inspiration

for similar policies within Europe. For example, the Victoria Department of Education

and Early Childhood Development has adopted a policy “[t]o ensure schools sup-

port students with transgender or intersex status”. The policy: (i) details privacy and

confidentiality approaches; (ii) demands that principals provide well-being support

services; (iii) demands that toilets, showers and changing rooms “are appropriate to

the student’s preferred or chosen gender”; (iv) indicates how to ensure community

adjustment in case of change of gender identity while enrolled at the same school;

and (v) how school documentation should change accordingly to reflect the stu-

dent’s preferred name and sex. The Maltese Ministry for Education and Employment

recently followed suit and drafted a policy entitled Trans, Gender Variant and Intersex

Students Policy developed in conjunction with LGBTI civil society.

Through funding from the Australian Government Department for Social Services,

OII Australia has published brochures for allies, parents and service providers, laying

down clear information about intersex, obligations of service providers, the 2013

anti-discrimination law, how to include intersex in sex and gender information, the

use of inclusive language and so on.

On the cultural front, the Douarnenez film festival in Brittany, France, has openly

and prominently embraced the intersex and trans community in its programme

since 2012. The festival, which welcomes more than 10 000 visitors annually, has also

become a place for intersex individuals and European intersex activists to meet, share

their experiences and plan further advocacy strategies, as well as find new allies.

While these initiatives are most welcome and can serve as good practices, it is obvi-

ous that much more needs to be done to reach out to the general public. Hence it

is important to include intersex-specific messages in general equality campaigns

and at the national and local levels. Professional training on mainstreaming intersex

issues among service providers needs to be provided systematically to all those who

need it and included in the curricula.

In view of the lifelong impact of past traumas and pain due to surgery, medicalisation

and other forms of discrimination affecting their well-being, many intersex people

would benefit from access to interdisciplinary counselling and support as well as

peer support, framed outside of a medical or pathological framework. Similar sup-

port should also be provided to parents, friends and colleagues in order to foster

understanding and social inclusion.

Non-discrimination and equal treatment

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Chapter 6

Access to justice

and accountability

6.1. Emerging national jurisprudence

o date, few cases have been taken to court to challenge the human rights

breaches suffered by intersex people. This is possibly due to the fact that in

many cases, lawsuits would need to be taken against the parents (or the legal

guardians) who consented to surgical interventions rather than the institutions or

the individuals who carried out the treatment. However, a small but important body

of jurisprudence does exist.

In 1999, the Constitutional Court of Colombia issued two intersex-specific decisions

– a global first – which significantly restricted the ability of doctors and parents to

resort to surgery when children are born with “atypical genitals”, as surgery could

impinge on the rights of the child and his or her best interests. The International

Commission for Jurists (ICJ) summed up the court’s reasoning, stating that “the need

to protect the right of free development of personality was greater in the case of

an eight-year old child, who had already become aware of his or her genitalia and

was better able to define his or her gender identity; as a child grew older, his or her

autonomy increased and deserved increased protection”. Furthermore, in these

decisions, the court recognised intersex people as a minority entitled to protection

by the state against discrimination motivated by intolerance. It also noted that it is

the responsibility of public authorities, the medical community and ordinary citizens

“to open a space to these people, who until now have been silenced”.

In 2008, the Constitutional Court of Colombia was presented with yet another case

where the complainant was a father who wished to opt for surgery for his five-year-

old intersex child; however, in view of the standards set by the 1999 court rulings, his

decision was not supported by the social services and the General Northern Clinic.

Holding on to its previous assessment, the court discussed “the clash between the

constitutional right to autonomy and the rights of the beneficiary, specifically in

cases involving children ... [and] found that, in intersex cases involving surgery, the

decision of the child was paramount, while the right of the parent to make decisions

in a protective capacity was secondary”.

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In one case, an intersex individual took a case against her surgeon. In 2007, Christiane

Völling sued the surgeon who removed her uterus, tube and ovaries without her

consent 30 years previously. One year later, the Cologne District Court found that

the doctor had “culpably violated her health and self-determination”, and ordered

the surgeon to pay her €100 000 in damages. Importantly, this case established two

key principles: i) the continued effect of surgeries suffered in the past and ii) com-

pensation beyond a mere token gesture or apology.

Other cases have reached the courts and had positive results in the Philippines and

in Kenya. In the first case, the Supreme Court of the Philippines relied on the fact that

the complainant’s wish to change the sex marker on the birth certificate was the result

of a “natural” biological medical condition, and that it was thus reasonable to allow

an intersex person to determine her or his own sex as his or her body matured. In

the second case, the complainant was Richard Muasya, who had suffered a number

of discriminatory experiences as a result of never being provided with a birth certif-

icate due to his “ambiguous genitalia”. As an adult, he was charged with the capital

offence of robbery with violence and was later convicted and placed in a male-only

prison. The High Court of Kenya found that his treatment in prison amounted to

inhuman and degrading treatment, as he was humiliated and exposed to derision,

and that invasive body searches on his person were “motivated by an element of

sadism and mischievous curiosity, to expose the petitioner’s unusual condition”. The

court concluded that this was contrary to the Kenyan Constitution and Article 5 of

the UDHR, and awarded him damages of 500 000 Kenyan shillings (equivalent to

around €4 000). In 2014, the same Kenyan Court ordered the government to issue

a birth certificate to an intersex child, which represents one more step towards the

recognition of intersex people in the country.

6.2. National human rights structures

National human rights structures (NHRSs) such as ombudspersons, equality bodies

and human rights commissions have proved especially useful in promoting equality

for minority groups and reaching out to them, addressing their complaints, and

advocating for greater recognition in society. As low-threshold complaints mech-

anisms they are easier and less costly to access than courts. The initiatives of Finland’s

Ombudsman for Gender Equality advocating for the inclusion of intersex in the law,

and the German Federal Anti-Discrimination Agency regarding gender designation

of intersex people, indicate how much can be done by such institutions when they

are mandated to cover intersex issues.

The European Network of Equality Bodies (EQUINET) has taken the initiative of issuing

its own perspective which, amongst others, looks at action that could be taken by

equality bodies to develop their work on LGBTI issues and possible EU-level action

to support it. This document clearly shows that intersex people rarely feature in the

reports and work of equality bodies and that no complaints from intersex people were

received by any of its members. It therefore called for greater engagement with intersex

people and their organisations, highlighting a good practice from Austria where the

Ombud for Equal Treatment organised a conference that allowed for the building of

bridges with intersex organisations and the development of a thematic brochure.

100

Human rights and intersex people

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EQUINET also called on its members to advocate for equality legislation which fully

protects LGBTI people from discrimination under the law and to name intersex people

specifically in equal treatment legislation. It urged its members to “[e]xpress concern

at early surgical interventions for intersex children without the child’s participation”.

101

Children’s ombudspersons, child protection authorities and patients’ ombudspersons

also have a role to play in protecting the best interests of intersex children and advo-

cating their human rights. For example, in Advice towards the Irish General Scheme

of the Gender Recognition Bill 2013, the Irish Ombudsman for Children stated that,

in view of the “extraordinary adversity and barriers to living with dignity”, gender

recognition legislation should aim to mitigate the challenges faced by transgender

and intersex children; and that “[t]he legislation must be informed by a thorough

assessment of what the impact of maintaining the status quo will be on transgender

and intersex young people”.

102

6.3. Accountability for suffering caused in the past

Both the German and the Swiss ethics councils take the position that intersex

people’s suffering due to past interventions should be acknowledged by society.

NEK-CNE notes that “[t]he medical practice of the time was guided by sociocultural

values which, from today’s ethical viewpoint, are not compatible with fundamental

human rights, specifically respect for physical and psychological integrity and the

right to self-determination”.

103

In this respect, the German council also suggests that there should be “at least sym-

bolic compensation especially to those who, on account of what would now be seen

as incorrect medical treatment, are afflicted with physical or psychological suffering

and often also incur expense that would not have arisen without this treatment”.

The council went on to state that “the creation of appropriate social conditions for

those concerned and sensitive treatment of their families” was highly important.

Additionally, financial compensation should be considered, and should be channelled

through a state-financed fund or a foundation, thus recognising that the “the medical

measures now deemed to be wrong were tolerated, or not prevented, by the state”.

104

The International Intersex Forum’s Public Statement has called for the provision

of “adequate redress, reparation, access to justice and the right to truth”. Another

common call by intersex individuals regards access to their own medical records.

The frequent unavailability of medical records also hinders intersex people’s access

to judicial remedies.

105

6.4. Guaranteeing future human rights compliance

To conclude, member states have a duty to end the secrecy around intersex issues,

and the current impunity in cases of discrimination. Truth, and accountability for past

malpractice and human rights violations, should be the cornerstones of any process

towards reparation. Furthermore, in order to ensure compliance with human rights

in the future, more needs to be done at all levels and by all relevant institutions to

gather information about current practices regarding intersex people and assess

Access to justice and accountability

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them through the lens of the highest ethical and human rights standards. Intersex

people and their organisations need to be key partners in such a process.

106

There is a need to address current stereotypes which lead to the marginalisation

of intersex people, and to address the issue of early interventions and surgeries.

Legislation needs to be introduced to establish the applicability of domestic human

rights protections to intersex people, as well as to facilitate access to courts, NHRSs

and other means of access to justice. Clear ethical standards need to guide case pro-

fessionals, including medical doctors and psychosocial care providers. Educational

campaigns to promote bodily diversity can also play an important role and should

be encouraged.

Finally, intersex children, their parents and families need adequate counselling and

support. Civil society advocates of intersex people should be able to participate in

the provision of information and services to intersex families in addition to medi-

cal and social professionals. Training about intersex issues and their human rights

implications needs to be improved among health and social services.

Human rights and intersex people

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Notes

J. A. Greenberg (1998), “Defining Male and Female: Intersexuality and the Collision between

Law and Biology”,

Arizona Law Review,

Vol. 41 No. 2, pp. 265-328.

2. The terms “sex” and “gender” are used inconsistently in different contexts and do not

have the same meaning across Europe, especially since some languages do not distin-

guish between the two. For the purpose of this document, distinction is drawn between

someone’s assigned sex at birth and the gender affirmed or preferred later on in life.

3. This issue paper focuses on the specific issues related to intersex people’s enjoyment of

human rights. It builds on the Human Rights Comment, published by the Commissioner

for Human Rights, entitled “A boy or a girl or a person – intersex people lack recognition

in Europe” (9 May 2014), available in English, French and Russian at: www.coe.int/web/

commissioner/blog.

4. D. C. Ghattas (2013),

Human Rights between the Sexes: A preliminary study in the life of inter*

individuals,

Heinrich Böll Stiftung: Publication Series on Democracy, Vol. 34, p. 10.

5. In 2009, the Commissioner for Human Rights published an issue paper entitled “Human

rights and gender identity” dealing with the specific human rights issues of trans peo-

ple, available in English, French, Russian, Spanish and Turkish at: wcd.coe.int/ViewDoc.

jsp?id=1476365.

6. Swiss National Advisory Commission on Biomedical Ethics (NEK-CNE) (2012), “On the

management of differences of sex development: ethical issues relating to ‘intersexuality’”

Opinion No. 20/2012; Intersexuelle Menschen e. V. / XY-Frauen (2008), Shadow Report

to the 6th National Report of the Federal Republic of Germany on the United Nations

Convention on the Elimination of All Forms of Discrimination against Women (CEDAW).

7. Transgender Equality Network Ireland (2013), “Human rights violations in Ireland on the

basis of gender identity and intersex identity”, submission to the Country Report Task

Forces, 109th Session of the Human Rights Committee, Geneva, October-November 2013;

J. Eisfeld, S. Gunther and D. Shlasko (2013), “The state of trans* and intersex organizing: A

case for increased support for growing but under-funded movements for human rights”;

see two relevant statements from the International Intersex Fora: (i) Public statement by

the Third International Intersex Forum (2013) at: www.ilga-europe.org/home/news/latest/

intersex_forum_2013; and (ii) Statement of the European Intersex Meeting in Riga (2014)

at: http://oiieurope.org/statement-of-the-european-intersex-meeting-in-riga-2014/.

8. A. Fausto-Sterling (2000),

Sexing the body: gender politics and the construction of sexuality,

New York: Basic Books, p. 51; Intersex was coined as a scientific term by German scien-

tist Richard Goldschmidt in the first edition of the 1901 professional journal entitled

Endocrinology

and became the leading medical term towards the mid-20th century; see

section 2.2 for a detailed overview of medical nomenclature.

9. OHCHR (2013), Fact sheet: “LGBT rights: frequently asked questions”.

10. J. Behrmann and V. Ravitsky (2013), “Queer liberation, not elimination: Why selecting

against intersex is not ‘straight’ forward”,

The American Journal of Bioethics,

Vol. 13 No. 10,

pp. 39-41.

11. LGBTIQ (an acronym intended to cover queer people along with LGBTI) is starting to be

used at institutional level on some occasions.

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12. FRANET thematic legal study on Austria serving as background information for the FRA

“Report on homophobia, transphobia, and discrimination on grounds of sexual orientation,

gender identity and intersexuality – 2015 Update – comparative legal analysis” reported

that an intersex woman successfully brought forward a case of discrimination under

disability protection provisions found in the Bundes-Behindertengleichstellungsgesetz

(Federal Disability Equal Treatment Act), see Oberste Gerichtshof (Austrian Supreme Court),

1Ob189/09i, 15.12.2009; Y. Menon (2011), “The intersex community and the Americans

with Disabilities Act”,

Connecticut Law Review,

Vol. 43 No. 4, pp. 1221-1251.

13. A. Fausto-Sterling (2000), op. cit., p. 51.

14. Parliamentary Assembly of the Council of Europe (2013), Resolution 1952 (2013) children’s

right to physical integrity, paragraph 7.5.3.

15. FRA’s multidisciplinary research network’s (FRANET) national contributions for the

FRA Report on Homophobia, Transphobia, and Discrimination on Grounds of Sexual

Orientation, Gender Identity and Intersexuality – 2015 Update – Comparative Legal

Analysis are referred to in this issue paper.

16. New Zealand Human Rights Commission (2010), “To be who I am” – intersex material

from report of the inquiry into discrimination experienced by transgender people; San

Francisco Human Rights Commission (2005), “A human rights investigation into the

medical ‘normalization’ of intersex people”; German Ethics Council (2012), “Intersexuality

opinion”; NEK-CNE (2012), op. cit., p. 8; Commonwealth of Australia (2013), “Second report:

Involuntary or coerced sterilisation of intersex people in Australia”.

17. A. Fausto-Sterling (2000), op. cit., p. 46; J. D. Hester (2004),

Intersex(es) and informed

consent: How physicians’ rhetoric constrains choice,

Theoretical Medicine and Bioethics

Vol. 25, No. 1, pp. 21-49.

18. J. Colapinto (11/12/1997), “The True Story of John/Joan”,

Rolling Stone,

pp. 54-97; J. Woweries

(2010),

Intersexualität: Eine Kinderrechtliche Perspektive

(Intersexuality: A Child Rights

Perspective), frühe Kindheit, Issue 0310, pp. 18-22; A. Dreger (1998),

Hermaphrodites

and the medical invention of sex,

Cambridge: Harvard University Press, pp. 182-183;

N. Ben-Asher (2006), “The necessity of sex change: A struggle for intersex and transsex

liberties”,

Harvard Journal of Law and Gender,

Vol. 29, No. 1, pp. 51-98; American Academy

of Pediatrics (2000), “Evaluation of the newborn with developmental anomalies of the

external genitalia”,

Pediatrics

Vol. 116 No. 1, pp. 138-142.

19. A. Dreger, E. K. Feder and A. Tamar-Mattis (2012), “Prenatal dexamethasone for congeni-

tal adrenal hyperplasia”,

Journal of Bioethical Inquiry,

Vol. 9 No. 3, pp. 277-294; B. A. Kelly,

A. J. Lewandowski, S. A. Worton, E. F. Davis, M. Lazdam, J. Francis, S. Neubauer, A. Lucas,

A. Singhal and P. Leeson (2012), “Antenatal glucocorticoid exposure and long-term altera-

tions in aortic function and glucose metabolism”,

Pediatrics,

Vol. 129, No. 5, pp. 1282-1290 ;

A. Briffa (2003),

Discrimination Against People Affected by Intersex Conditions,

p. 9; M. Carpenter

(2014), “Submission on the review of Part B of the Ethical guidelines for the use of assisted

reproductive technology in clinical practice and research”, 2007, p. 6; C. M. Girardin and

G. Van Vliet (2011), “Counselling of a couple faced with a prenatal diagnosis of klinefelter

syndrome”,

Acta Pædiatrica,

Vol. 100, No. 6, pp. 917-922.

20. C. J. Dewhurst and R. R. Gordon (1969),

The Intersexual Disorders,

London: Baillière, Tindall

and Cassell, p. 52; Y. Low, J. Hutson and Murdoch Children’s Research Institute Sex Study

Group (2003), “Rules for clinical diagnosis in babies with ambiguous genitalia”,

Journal

of Paediatrics and Child Health,

Vol. 39 No. 6, pp. 406-413.

21. M. Rupprecht (2013), “Children’s right to physical integrity”, report, Committee on Social

Affairs, Health and Sustainable Development, PACE (Doc. 13297).

22. New Zealand Human Rights Commission (2010), op. cit., and San Francisco Human Rights

Commission (2005), op. cit.; Ponsonby Productions Ltd. (2012), “Intersexion” op. cit.

23. C. Völling (2010),

Ich war Mann und Frau: Mein Leben als Intersexuelle

(I was a man and a

woman: my intersex life), Fackelträger, p. 94.

Human rights and intersex people

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24. Court proceedings and decision covered in Chapter 6.

25. M. Bauer and Zwischengeschlecht.org (2013), “Stop intersex genital mutilations!”.

26. E. Schneider (2013), “An insight into respect for the rights of trans and intersex children

in Europe”, Council of Europe, pp. 29-30.

27. K. Schützmann, L. Brinkmann, M. Schacht and H. Richter-Appelt (2007), “Psychological

distress, self-harming behavior, and suicidal tendencies in adults with disorders of sex

development”,

Archives of Sexual Behavior,

Vol 38, No. 1, pp. 16-33.

28. H. Viloria (18/09/2009), Commentary: My life as a “Mighty Hermaphrodite”, CNN.com; San

Francisco Human Rights Commission (2005) op. cit., p. 32.

29. P. A. Lee, C. P. Houk, S. F. Ahmed and I. A. Hughes (2006), “Consensus statement on the

management of intersex disorders”,

Pediatrics,

Vol. 118, No. 2, pp. 488-500; M. Holmes

(2011), “The intersex enchiridion: Naming and knowledge in the clinic”, in

Somatechnics,

Vol. 1 No. 2, pp. 87-114 ; more recently this acronym DSD has also been understood in

some circles to refer to “differences of sex development” and is at times used instead of

(or interchangeably with) “intersex”.

30. International Statistical Classification of Diseases and Related Health Problems 10th

Revision (Version: 2010); Jennie Kermode (13/06/2012), “Debate surrounds intersex

inclusion in the DSM V”, PinkNews.

31. ICD-11 Beta draft – Joint linearization for mortality and morbidity statistics (last update:

01.09.2014).

32. WPATH (2011), “Standards of care for the health of transsexual, transgender, and gen-

der-nonconforming people”, Version 7,

International Journal of Transgenderism,

Vol. 13,

pp. 165–232 ; OII Australia (29/09/2011), “World Professional Association for Transgender

Health (WPATH) pathologizes intersex people in its standards of care”,

Version 7.

33. WHO (2006), Constitution of the World Health Organization, forty-fifth edition, supple-

ment, basic documents, Ch. 1, Art. 1.

34. State of Victoria Department of Health (2013),

Decision-making principles for the care

of infants, children and adolescents with intersex conditions,

p. 2 ; J. C. Streuli, E. Vayena,

Y. Cavicchia-Balmer and J. Huber (2013), “Shaping parents: Impact of contrasting profes-

sional counseling on parents’ decision making for children with disorders of sex devel-

opment”,

Journal of Sexual Medicine,

Vol. 8 No. 3, pp. 1953-1960; C. Greenfield (8/7/2014),

“Should we ‘fix’ intersex children?”,

The Atlantic.

35. E. Schneider (2013), op. cit., p. 30; P. Sampaio Furtado et al. (2012), “Gender dysphoria

associated with disorders of sex development”,

Nature Reviews Urology 9,

pp. 620-27.

36. Ibid., pp. 30-31.

37. S. Graham (08/08/2006), “The secret of my sex”,

The Independent.

38. NEK-CNE (2012), op. cit., p. 10.

39. M. Bennett-Smith (05/15/2013), “Mark and Pam Crawford, parents of intersex child, sue

South Carolina for sex assignment surgery”,

The Huffington Post.

40. In a number of European countries the law restricts the ability of minors to have a say in

decision-making processes regarding their own health until the age of 14 or even until

majority, thus hindering intersex children and adolescents’ ability to have a say on the

treatments to be received, depending on their own maturity; NEK-CNE (2012), op. cit.

41. Bonobo3D (2013), Mika Venhola on intersex, http://youtu.be/riNtxjntqZE; M. Venhola

(2012), “Intersex: Ambiguous genitals or ambiguous medicine?”, 12th International

Symposium on Law, Genital Autonomy, and Human Rights: Programme and Syllabus of

Abstracts.

42. OHCHR, UN Women, UNAIDS, UNDP, UNFPA, UNICEF and WHO (2014), Eliminating forced,

coercive and otherwise involuntary sterilization: An interagency statement.

43. Ibid., p. 7.

44. Ibid., p. 14.

Notes

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45. CESCR (2009), General comment No. 20: Non-Discrimination in Economic, Social and

Cultural Rights (Article 2, paragraph 2, of the International Covenant on Economic, Social

and Cultural Rights), (E/C.12/GC/20).

46. Case C-13/94,

P v. S and Cornwall County Council

(1996), IRLR 347; Case C-117/01,

K.B. v.

National Health Service Pensions Agency

(2004), ECR I-541; Case C-423/04,

Sarah Margaret

Richards v. Secretary of State for Work and Pensions

(2006), ECR I-3585; Recital 3 of Directive

2006/54/EC of the European Parliament and of the Council of 5 July 2006 on the imple-

mentation of the principle of equal opportunities and equal treatment of men and women

in matters of employment and occupation (recast), published in the

Official Journal of the

European Union

L 204, 26 July 2006, pp. 23-36 ; D. Schiek, L. Waddington and M. Bell (2007),

Cases, materials and text on national, supranational and international non-discrimination

law: Ius commune casebooks for the common law of Europe,

Oxford: Hart Publishing, p. 79.

47. Morgan Carpenter (2014), “Submission on the ethics of genetic selection against intersex

traits”; Robert Sparrow (2013), “Gender eugenics? The ethics of PGD for intersex condi-

tions”,

American Journal of Bioethics,

Vol. 13, No. 10, pp. 29-38.

48. Convention for the Protection of Human Rights and Dignity of the Human Being with

Regard to the Application of Biology and Medicine: Convention on Human Rights and

Biomedicine (ETS No. 164); and the explanatory report to the convention.

49. PACE (2011), Resolution 1829 (2011) “Prenatal sex selection”; Commissioner for Human

Rights (15 January 2014), “Sex-selective abortions are discriminatory and should be

banned”; Council of Europe Committee of Ministers (2002), Recommendation Rec(2002)5

of the Committee of Ministers to member states on the protection of women against

violence.

50. Zwischengeschlecht.org (2014), “Intersex genital mutilations: human rights violations of

children with variations of sex anatomy”: NGO report to the 2nd, 3rd and 4th periodic

report of Switzerland on the Convention on the Rights of the Child (CRC); UNHRC (2013),

Report of the Special Rapporteur on Torture and Other Cruel, Inhuman or Degrading

Treatment or Punishment, A/HRC/22/53; CEDAW (2011), Concluding observations on

Costa Rica, CEDAW/C/CRI/CO/5-6, paragraph 40.

51. UNHRC (2013), op. cit.

52. See, for example,

Storck v. Germany,

Application No. 61603/00, judgment of 16 June 2005

and

Glass v. the United Kingdom,

Application No. 61827/00, judgment of 9 March 2004.

53. M. Rupprecht (2013), op. cit.

54. Principles on the application of international human rights law in relation to sexual

orientation and gender identity, www.yogyakartaprinciples.org.

55.

Van Kück v. Germany,

Application No. 35968/97, judgment of 12 June 2003; PACE (2013),

op. cit.

56. Commonwealth of Australia (2013) op. cit., p. 74.

57. Ibid., p. xiii.

58. OHCHR et al. (2014), op. cit.

59. UN Committee on the Rights of the Child (2015), Concluding observations on Switzerland,

advance unedited version, 4 February 2015, CRC/C/CHE/CO/2-4, p. 9.

60. Yogyakarta Principles (2006), op. cit.

61. S. Agius and C. Tobler (2012),

Trans and intersex people: discrimination on the grounds

of sex, gender identity and gender expression,

European Network of Legal Experts in the

Non-Discrimination Field, Brussels: European Commission; Council of the European Union

(2013),

Guidelines to Promote and Protect the Enjoyment of All Human Rights by Lesbian,

Gay, Bisexual, Transgender and Intersex (LGBTI) Persons.

62. PACE (2013), op. cit.; Commissioner for Human Rights (9 May 2014) op. cit.; Eric Schneider

(dated 2013; published in 2014), op. cit.

63. Human rights, sexual orientation, and gender identity and expression (2013), AG/RES.

2807 (XLIII-O/13).

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64. OHCHR (30/05/2014), Statement by Navi Pillay, United Nations High Commissioner for

Human Rights on the occasion of the presentation of the ILGA “LGBTI Friend of the Year”

Award and 2014 State-Sponsored Homophobia Report and the Panel on International

Human Rights Law and Sexual Orientation.

65. UNHRC (2013), op. cit.; OHCHR et al. (2014), op. cit.; UNHCR (2011), “Working with lesbian,

gay, bisexual, transgender and intersex persons in forced displacement”.

66. NEK-CNE (2012), op. cit., p. 5.

67. D. C. Ghattas (2013), op. cit., p. 24; NEK-CNE (2012), op. cit., p. 5.

68. D. C. Ghattas (2013), op. cit., p. 24.

69. Ibid., pp. 25 and 31-32; Belgian

Civil Code,

Articles 55, 56 and 57; Ministère de la Justice

(French Ministry of Justice) (2011),

Circulaire Relative aux Règles Particulières à Divers Actes

de l’État Civil Relatifs à la Naissance et à la Filiation

(Instruction about particular rules for

various acts of civil status concerning birth and filiation); FRANET thematic legal stud-

ies on Finland and Portugal serving as background information for the FRA

Report on

Homophobia, Transphobia, and Discrimination on Grounds of Sexual Orientation, Gender

Identity and Intersexuality – 2015 Update – Comparative Legal Analysis

(information on

Portugal provided by Instituto dos Registos e Notariado (Institute of Registration and

Notary Affairs)).

70.

Verordnung zur Ausführung des Personenstandsgesetzes

(Regulation on the Implementation

of the Civil Status Act) (Personenstandsverordnung - PStV);

Gesetz zur Änderung

Personenstandsrechtlicher Vorschriften

(Law Amending the Personal Status Legal regula-

tions) (Personenstandsrechts-Änderungsgesetz - PStRÄndG); D. C. Ghattas (2013), op. cit.,

pp. 35-36; German Federal Anti-Discrimination Agency (FADA) (2013), Press Release:

“European

roundtable on the civil status law of trans* and intersex people”.

71.

Landgericht München I 16. Zivilkammer

(Regional Court of Munich, Civil Division), 16 T

19449/02, 30.06.2003.

72. FRANET thematic legal study on the Netherlands serving as background information

for the FRA “Report on homophobia, transphobia, and discrimination on grounds of

sexual orientation, gender identity and intersexuality – 2015 Update – Comparative

Legal Analysis”; Gerechtshof Arnhem (Arnhem Court of Appeal) (2005),

Case No.

ECLI:NL:GHARN:2005:AU7290,

15.11.2005;

Hoge Raad

(Dutch Supreme Court) (2007),

Case No. ECLI:NL:HR:2007:AZ5686,

30.03.2007.

73. NEK-CNE (2012), op. cit.

74. Ibid., pp. 14-15; Incidentally this principle already existed in the Prussian General Land

Law of 1794 and stayed in force in some German-speaking jurisdictions until the end of

the 19th century; German Ethics Council (2012), pp. 108-112.

75. International Intersex Forum (2013) op. cit.

76.

Ley 26.743 Establécese el Derecho a la Identidad de Género de las Personas

(Law 26.743

Establishing the Persons’ Right to Gender Identity); GATE (2012), English translation of

Argentina’s gender identity law as approved by the Senate of Argentina on 8 May 2012.

77.

Lov om Ændring af Lov om Det Centrale Personregister

(amendment of the Act of the Civil

Registration System).

78. Projet du Loi N° 6568 Portant Réforme du Droit de la Filiation (Draft Bill No. 6568 on the

Reform of Filiation); FRANET thematic legal study on Luxembourg serving as background

information for the FRA “Report on homophobia, transphobia, and discrimination

on grounds of sexual orientation, gender identity and intersexuality – 2015 Update –

Comparative Legal Analysis”; Bill No. 70 – Gender Identity, Gender Expression and Sex

Characteristics Bill.

79. ICAO (2006), Machine Readable Travel Documents, Sixth Edition, Part 1, Section IV, p. 11.

80. See www.passports.gov.au/web/sexgenderapplicants.aspx; Australian Government

(2013), Guidelines on the recognition of sex and gender.

Notes

Page

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81.

Sunil Babu Pant v. Government of Nepal,

Writ No. 917 of the year 2064 BS (2007 AD);

Immigration and Refugee Board of Canada (2012) Nepal: treatment of sexual minorities,

including legislation, state protection, and support services, NPL103943.E.

82. Open Society Foundations (2014),

License to be yourself: laws and advocacy for legal gender

recognition of trans people,

p. 23.

83. A number of FRANET thematic legal studies on countries serving as background informa-

tion for the FRA “Report on homophobia, transphobia, and discrimination on grounds of

sexual orientation, gender identity and intersexuality – 2015 update – Comparative Legal

Analysis indicate that constitutional or equal treatment provisions covering the grounds

of ‘sex’, ‘genetic characteristics’, ‘personal identity’ or similar, as well as ‘other grounds’”, may

already cover intersex; however, due to lack of intersex specific case-law, that possibility

remains untested and hence debatable; Dan Ghattas (2013), op. cit., p. 26; Gina Wilson

(2013), Equal rights for intersex people: Testimony of an intersex person,

The Equal Rights

Review,

Vol. 10, p. 135.

84. E. Schneider (2013), op. cit., p. 32; A. Tamar-Mattis (2013), “Report to the Inter-American

Commission on Human Rights: Medical treatment of people with intersex conditions as a

human rights violation”; Australian Human Rights Commission (2013), Sexual orientation,

gender identity and intersex status discrimination: Information sheet; AIS Group Australia

Inc. (2010), Intersex Community Submission – LGBTI Discrimination, p. 5.

85. IOC (2012), IOC Regulations on female hyperandrogenism: Games of the XXX Olympiad

in London, 2012; FIFA (2011), Regulations: FIFA gender verification; H. Viloria and

M. J. Martínez-Patino (2012), “Re-examining rationales of ‘fairness’: an athlete and insid-

er’s perspective on the new policies on hyperandrogenism in elite female athletes”, in

The American Journal of Bioethics,

Vol. 12, No. 7, pp. 17-33 ; R. Jordan-Young, P. Sönksen

and K. Karkazis (2014), “Sex, health and athletes”,

British Medical Journal

2014, 348:g2926.

86. Judicial Matters Amendment Act 2005, Act No. 22 of 2005, Republic of South Africa,

Government Gazette No. 28391, 11 January 2006;

Allgemeines Gleichbehandlungsgesetz

(General Equal Treatment Act) 14 August 2006 (BGBl. I S. 1897); FADA (2010), Guide to the

General Equal Treatment Act: Explanations and Examples, p. 16; FRANET thematic legal

study on Germany serving as background information for the FRA “Report on homophobia,

transphobia, and discrimination on grounds of sexual orientation, gender identity and

intersexuality – 2015 update – Comparative Legal Analysis” states: “The explanatory note

of the General Law on Equal Treatment (Allgemeines Gleichbehandlungsgesetz) explicitly

mentions intersexual people. While the explanatory note subsumed intersexuality under

the discrimination ground of sexual identity, the dominant view today is that it is covered

by the characteristic ‘sex’.”; see Bundestag (German Federal Parliament), BT-Drs. 16/1780,

8 June 2006, p. 31; German Ethics Council (2012), op. cit., p. 133; FRANET thematic legal

study on Austria;

Gleichbehandlungsanwaltschaft Österreich

(Austrian Ombudsperson

for Equal Treatment) (2013),

Gleichbehandlung für Transgender Personen und Intersexuelle

Menschen

(Equality for Transgender Persons and Intersex People).

87.

Laki miesten ja naisten välisestä tasa-arvosta

(Gender Equality Act, Finland);

Tasa-

arvovaltuutetun toimisto

(Office of the Ombudsman for Gender Equality) (2012),

Selvitys

sukupuolivähemmistöjen asemasta

(Report on the status of gender minorities); Offences

(Aggravation by prejudice) (Scotland) Act 2009 (asp 8).

88.

Ley 14/2012, de 28 de junio, de no discriminación por motivos de identidad de género y de

reconocimiento de los derechos de las personas transexuales

(Act 14/2012, of 28 June,

non-discrimination on grounds of gender identity and recognition of the rights of trans

persons); FRANET thematic legal study on Spain serving as background information for

the FRA “Report on homophobia, transphobia and discrimination on grounds of sexual

orientation, gender identity and intersexuality – 2015 update – Comparative Legal Analysis.

89.

Sex Discrimination Amendment (Sexual Orientation, Gender Identity and Intersex Status) Act 2013,

Act No. 98 of 2013.

Human rights and intersex people

Page

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90. Bill No. 70, op. cit.

91. Lower Saxony and North Rhine Westphalia – self-help and peer-counselling provided

by Intersexuelle Menschen e.V., and Berlin for empowerment and anti-discrimination

work carried out by TransInterQueer e.V.; FRANET thematic legal study on Austria serving

as background information for the FRA “Report on homophobia, transphobia and dis-

crimination on grounds of sexual orientation, gender identity and intersexuality – 2015

update – Comparative Legal Analysis; Werberat (Austrian Advertising Council) (undated),

Spezielle Verhaltensregeln

(Special Rules of Conduct);

Bundesministerium für Unterricht,

Kunst und Kultur

(Federal Ministry for Education, the Arts and Culture) (2012),

Ganz Schön

Intim

(Really Intimate).

92. Victoria Department of Education and Early Childhood Development (undated), “Gender

identity (students with a transgender or intersex status)”; Maltese Ministry of Education

and Employment (unpublished, expected during 2015), “Trans, Gender Variant and

Intersex Students Policy”.

93. OII Australia (2014), Making your service intersex friendly.

94. See

Festival de Cinéma Douarnenez

(37th Cinema Festival, Douarnenez) (2014),

Dissidence

Trans Intersexes

(Trans and intersex dissidence).

95. Corte Constitucional de Colombia (Constitutional Court of Colombia), Sentencia SU-337/99,

12.05.1999 , and Sentencia T-551/99, 02.08.1999; ICJ (2011),

Sexual orientation, gender

identity and justice: A comparative law casebook,

p. 139; Julie A. Greenberg and Cheryl

Chase (1999), Background of Colombia decisions.

96. Corte Constitucional de Colombia (Constitutional Court of Colombia), Sentencia T-912/08,

18.12.2008 ; see footnote no. 95, ICJ (2011) p. 151.

97. See Section 2.1 for her own personal testimony;

Kölner Landgericht

(Cologne District

Court), 25 O 179/07, 6 February 2008.

98.

Republic of the Philippines v. Jennifer B. Cagandahan,

Supreme Court of the Philippines,

Second Division, G.R. No. 166676, 12.09.2008;

Richard Muasya v. The Attorney General and

Others,

High Court of Kenya, Petition No. 705 of 2007, 02.12.2010;

Baby “A” (Suing through

the Mother E A) and another v. The Attorney General and 6 others,

High Court of Kenya,

Petition No. 266 of 2013, 05 December 2014.

99. Covered in Sections 5.2 and 4.1 respectively.

100. EQUINET (2013), Equality bodies promoting equality and non-discrimination for LGBTI

people – An Equinet Perspective; FRANET thematic legal study on the Netherlands

serving as background information for the FRA “Report on homophobia, transphobia,

and discrimination on grounds of sexual orientation, gender identity and intersexuality

– 2015 update – comparative legal analysis” indicates that a complaint by an intersex

woman has reached the Netherlands Institute for Human Rights and is currently pending.

The case regards insurance coverage regarding depilation, which is currently covered

for transsexuals, but was denied to her in spite of her presenting as female; the FRANET

thematic legal study on Austria states that networking with intersex and trans organisa-

tions started in 2010 and continues to this day.

101. EQUINET (2013), op. cit.

102. Irish Ombudsman for Children (2013), Advice of the Ombudsman for Children on the

general scheme of the Gender Recognition Bill 2013, p. 3.

103. NEK-CNE (2012), op. cit., p. 18.

104. German Ethics Council (2012), op. cit., pp. 115-116.

105. International Intersex Forum (2013), op. cit.

106. For example, the Dutch Ministry of Education, Culture and Science, commissioned an

exploratory study to gain greater insight into the social situation of intersex people:

Jantine Van Lisdonk (2014),

Living with intersex/DSD: An exploratory study of the social

situation of persons with intersex/DSD.

Notes

Page

To this day, European societies remain largely unaware of the reality of

intersex people. The classification of humankind into two categories,

female and male, is omnipresent and informs the way we understand

and organise the world around us. People who do not fit neatly into

these two categories are exposed to human rights violations. Among

them, intersex people are especially vulnerable.

The supposed dichotomy of gender – and the corresponding medical

norms – have resulted in routine medical and surgical interventions

on intersex people even when they have not been adequately

consulted or informed prior to such procedures. Secrecy and shame

surrounding the bodies of intersex people have permitted the

perpetuation of these practices while the human rights issues at

stake have remained for the most part unaddressed.

This issue paper traces the steps which have already been taken

towards understanding and responding to the situation of intersex

people from an ethical and human rights perspective. It urges

governments to end medically unnecessary “normalising“ treatment

of intersex people when it takes place without their free and

fully informed consent. It also suggests ways forward in terms of

protection against discrimination, adequate recognition of sex on

official documents and access to justice.

PREMS

037015

www.commissioner.coe.int

ENG

The Council of Europe is the continent’s leading

human rights organisation. It comprises 47 member

states, 28 of which are members of the European

Union. All Council of Europe member states have

signed up to the European Convention on Human

Rights, a treaty designed to protect human rights,

democracy and the rule of law. The European Court

of Human Rights oversees the implementation

of the Convention in the member states.