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PROTECTING
INTERSEX PEOPLE
IN EUROPE:
A TOOLKIT FOR LAW
AND POLICYMAKERS
WITH DIGITAL APPENDIX
AND CHECKLIST
Dan Christian Ghattas
 LIU, Alm.del - 2018-19 (1. samling) - Bilag 80: Henvendelse af 17/5-19 fra Intersex Danmark om toolkit til politiske beslutningstagere om interkøn
PROTECTING INTERSEX PEOPLE IN EUROPE:
A TOOLKIT FOR LAW AND POLICYMAKERS
WITH DIGITAL APPENDIX AND CHECKLIST
Dan Christian Ghattas
 LIU, Alm.del - 2018-19 (1. samling) - Bilag 80: Henvendelse af 17/5-19 fra Intersex Danmark om toolkit til politiske beslutningstagere om interkøn
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Rue du Trône/Troonstraat 60
1050 Brussels
Belgium
Telephone: + 32 2 609 54 10, Fax: + 32 2 609 54 19
www.ilga-europe.org
www.oiieurope.org
Design & layout: Silja Pogule,
www.siljapo.com
Printer: Corelio Printing,
www.corelio.be
This publication has been produced with the financial support of the European Union’s
Rights, Equality and Citizenship Programme 2014-202. The content of this publication
as the sole responsibility of ILGA-Europe and OII Europe and can in no way be taken to
reflect the views of the European Commission.
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ACKNOWLEDGEMENTS
This toolkit would not have been possible without the strength and resilience of the European Intersex Community and
the hard and continuous work of intersex activists all over Europe, nationally and on EU and CoE level. This toolkit would
also not have been possible without the 2013 Malta Declaration, the 2014 the Riga Statement and the 2017 Vienna
Statement. The work that the European and global intersex community put into creating these documents has been key
for developing this toolkit. I want to thank my fellow intersex activists for all the conversations we had in the past ten
years and for the continuous support we give each other.
Last but certainly not least I want to thank ILGA-Europe for their ongoing support. Starting in 2009 this collaboration has
been substantial in opening doors on the European level, in bringing intersex people together and supporting intersex-
led intersex work. My special thanks go to Katrin Hugendubel, Sophie Aujean and Cianán Russell for creating this toolkit
with me.
PROTECTING INTERSEX PEOPLE IN EUROPE:
A TOOLKIT FOR LAW AND POLICYMAKERS
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TABLE OF CONTENTS
Foreword
How to Use This Toolkit
Some Basic Facts
Intersex people
Millions of intersex people exist
Pre-natal interventions
Medical interventions on healthy bodies
Intersex Genital Mutilation (IGM)
Medical interventions on intersex infants and children are still the rule
FGM and IGM – commonalities to consider
Social norms cause human rights violations
Intersex people are discriminated against
Intersexphobia exists
Protection starts with supporting parents
6
8
9
9
9
10
10
11
11
12
13
13
13
14
PROTECTION: Putting an end to human rights violations on intersex people
Protecting intersex people against violations of their right to bodily integrity
Current Best Practices
Personal, prior, free and fully informed consent is key
What to do?
Common Pitfalls to Avoid
Which terminology can be challenging in regards to implementation of a law?
Existing legislation (e.g. against sterilisation or FGM) is not enough
Treatment codes are not legally secure
15
15
16
16
17
19
19
20
20
Protecting intersex people from discrimination in all areas of life
Intersex people must be protected under the ground of “sex characteristics”
What to do?
21
21
22
Health
Impaired access to health
Access to needed medication
Counselling
What to do?
Education
What to do?
Employment
Intersex people face discrimination in job search and employment
What to do?
Hate Crimes and Hate Speech
Intersex people are victims of hate crimes and hate speech
What to do?
23
23
24
24
25
27
28
30
30
31
32
32
32
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Gender Marker Registration at Birth
The third option
A blank gender marker is not the same as a gender marker
What to do?
Legal Gender Recognition
Intersex children and adolescents must be allowed to change their gender markers in
official documents
Societal reality makes multiple sex/gender marker changes inevitable
Requiring medical records for legal gender recognition is a human rights violation
Requiring divorce for legal gender recognition is a human rights violation
Intersex refugees and asylum seekers need to be protected
Access to Justice and Redress
What to do?
Reparation and redress are a matter of taking responsibility
What to do?
33
33
33
35
36
36
36
37
37
38
38
39
40
40
DATA COLLECTION: Addressing research gaps
What to do?
41
42
FUNDING: Creating sustainability
What to do?
43
44
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A TOOLKIT FOR LAW AND POLICYMAKERS
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FOREWORD
Bodily autonomy – making one’s own informed decisions about one’s body and what happens to it – is a fundamental
human right, repeatedly enshrined throughout myriad human rights instruments globally. Each of us holds this right
individually. However, it is not equally protected nor enforced for everyone.
Across Europe, as well as much of the world, the right to bodily autonomy is regularly and greviously violated on the
basis of sex characteristics. These violations are increasingly documented, and today, people with variations of sex
characteristics are internationally recognised as victims of harmful medical practice and other human rights violations.
From 2009 to the present, United Nations Treaty Bodies have called on Member States to stop human rights violations
against intersex people 49 times. Of these, Council of Europe Member States have received 26 UN Treaty Body
recommendations, 15 of these in the past two years alone.
1
The Yogyakarta Principles plus 10 call for protection of
intersex people under the ground of “sex characteristics” and for ending human rights violations on intersex people,
including protecting their right to bodily and mental integrity.
2
Additionally, European bodies such as the Parliamentary Assembly of the Council of Europe and the European Parliament
have both passed resolutions (2017 and 2019, respectively) calling for, among other protections and policies, the
prohibition of sex-“normalising” surgery and other treatments practised on intersex children without their informed
consent in national law among their respective Member States.
3
On a national level, so far only Malta (2015) and Portugal (2018) have established protections for intersex people from
violations of their bodily integrity and, together with Greece (2016), protection against discrimination on the ground of
“sex characteristics”
4
. Additionally, courts have begun to recognise and adjudicate on the human rights violations faced
by intersex people, both with respect to bodily integrity and gender markers.
5
Protecting intersex people does not only ensure that people with variations of sex characteristics can enjoy their human
rights. It also protects intersex people’s families, as these often equally suffer from the invisibility, shame and taboo
surrounding intersex people, and face structural and verbal discrimination. Protecting intersex people and their families
by creating an environment that cherishes diversity and works towards inclusion of all parts of the population has an
effect on society as a whole. By living and working with people with different experiences and backgrounds we are able
to learn and broaden our viewpoints, and diverse views make for better decisions.
1 A comprehensive and regularly updated list of UN recommendations concerning intersex human rights violations can be found on the OII Europe
website https://oiieurope.org/international-intersex-human-rights-movement-resource-list/
2 The Yogyakarta Principles plus 10. Additional Principles and State Obligations on the Application of International Human Rights Law in relation to Sexual
Orientation, Gender Identity, Gender Expression and Sex Characteristics to complement the Yogyakarta Principles. As adopted on 10 November 2017,
Geneva
http://yogyakartaprinciples.org/wp-content/uploads/2017/11/A5_yogyakartaWEB-2.pdf
3 See the 2017 Parliamentary Assembly of the Council of Europe resolution here: http://assembly.coe.int/nw/xml/XRef/Xref-DocDetails-en.
asp?FileID=24232&lang=en. See the 2019 European Parliament resolution here: http://www.europarl.europa.eu/sides/getDoc.do?pubRef=-//EP//
TEXT+TA+P8-TA-2019-0128+0+DOC+XML+V0//EN&language=EN
4 Finland revised its Gender Equality Act in 2015, which now also covers “gender features of the body” in order to protect intersex people.
5 See Appendix.
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Governments working against homophobia and transphobia should therefore also work against the human rights
violations and discrimination intersex people face, as these are a direct result of the homophobia and transphobia that
still prevails in society. However, as the human rights violations intersex people’s face often differ significantly from
those of LGBT people, they need to be protected on their own ground.
Protecting intersex people is not and cannot be treated as a matter of choice. It is instead inherent in the protection of
the fundamental rights to which every human being is entitled.
We are delighted to present you with this toolkit and accompanying appendix and checklist so that we can work together
to ensure the protection of all people on the basis of sex characteristics, including those most vulnerable to violations
and abuses.
Dan Christian Ghattas
Evelyne Paradis
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A TOOLKIT FOR LAW AND POLICYMAKERS
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HOW TO USE THIS
TOOLKIT
Protecting Intersex People in Europe:
A toolkit for law and policymakers comes in three parts:
This toolkit
Digital appendix
Digital checklist
These parts are intended to complement one another and to be used in concert with guidance and input from affected
intersex people and communities. The toolkit describes the areas of life in which intersex people are most vulnerable to
violations on the basis of their sex characteristics, and provides detailed guidance on what to do to minimise or eliminate
these violations. The appendix serves to elaborate the existing legal landscape with references to and excerpts from
statements, observations, and jurisprudence. Finally, the checklist is a simplified but complete list of the
recommendations from the toolkit, designed as a quick reference guide for policymakers and public servants working to
protect the rights of intersex people.
Throughout the main toolkit, references to specific legal instruments that exemplify the current best practice related to
sex characteristics are highlighted. Additionally, central concepts such as
personal, prior, free, and fully-informed consent
and
expert-sensitive counselling
are explained. In some cases, common pitfalls in legal language that should be avoided
are also detailed.
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SOME BASIC FACTS
their life: at birth, during childhood, in puberty or even in
INTERSEX PEOPLE
Intersex individuals are born with sex characteristics (sexual
anatomy, reproductive organs, hormonal structure and/or
levels and/or chromosomal patterns) that do not fit the
typical definition of male or female.
The term “intersex” is an umbrella term for the spectrum of
variations of sex characteristics that naturally occur within the
human species. The term intersex acknowledges the fact that
physically, sex is a spectrum and that people with variations of
sex characteristics other than male or female exist.
Sex characteristics are set out from birth, whether we are
intersex or not. However, the fact that someone has an
intersex body can become apparent at different times in
adulthood. Depending on the specific life circumstances and
the degree of taboo in their environment, a person might
learn that they have an intersex body at a very early age or
later in life. Some intersex people never find out at all.
MILLIONS OF INTERSEX PEOPLE
EXIST
According to the United Nations at least 1.7% of the
population, or, globally speaking, as of 2019, 131 million
people have been born with intersex traits.
6
This means that
almost 1 person in 60 has a variation of sex characteristics and
does not fit the typical medical and societal definition of male
or female, and thus that at all ages they are at risk of being
subjected to discrimination and other human rights violations
on the basis of their variation of sex characteristics.
According to studies published in the Netherlands in 2014
7
at
least 1 in 200 people are at risk of being subjected to invasive
surgeries and other medical interventions, like hormonal
treatment, based on being diagnosed by medical professionals
as having a “Disorder of Sex Development” (DSD
8
) or an
“unspecified” diagnosis, such as “unspecified malformation
6 United Nations Office of the High Commissioner for Human Rights (2015): Fact
Sheet. Intersex. https://unfe.org/system/unfe-65-Intersex_Factsheet_ENGLISH.pdf
7 The Netherlands Institute for Sociological Research (2014): Living with
intersex/DSD. An exploratory study of the social situation of persons with
intersex/DSD. Written by Jantine van Lisdonk. Appendix B Prevalence table
for intersex/dsd. https://www.scp.nl/english/Publications/Publications_by_
year/Publications_2014/Living_with_intersex_DSD
8 See: Dan Christian Ghattas (2015): Standing up for the human rights of
intersex people – how can you help? Ed. by ILGA-Europe and OII Europe.
Brussels, p. 20.
9 U. Klöppel (2016): Zur Aktualität kosmetischer Operationen ‚un-
eindeutiger‘ Genitalien im Kindesalter. Hg. von der Geschäftsstelle des
Zentrums für transdisziplinäre Geschlechterstudien der Humboldt-
Universität zu Berlin. Berlin https://www.gender.hu-berlin.de/de/
publikationen/gender-bulletins/bulletin-texte/texte-42/kloeppel-2016_zur-
aktualitaet-kosmetischer-genitaloperationen, p. 56-62.
10 See: Council of Europe Commissioner for Human Rights (2015): Human
rights and intersex people. Issue Paper, p. 25 https://wcd.coe.int/ViewDoc.
jsp?Ref=CommDH/IssuePaper%282015%291&Language=lanEnglish&Ver=o
riginal; see also interview with Blaise Meyrat in the Documentary “Un
Corps, Deux Sexes”, 20:50 – 21:49 https://pages.rts.ch/emissions/36-
9/4302693-un-corps-deux-sexes.html?anchor=4433097#4433097; see also:
Wiebren Tjalma (2017): The Blessings of Erectile Bodies. Journal of Pediatric
and Adolescent Gynecology 30(4) (2017) : 514-515 http://www.jpagonline.
org/article/S1083-3188(17)30262-0/abstract. For more information on the
danger of cosmetic, deferrable, and medically unnecessary interventions
also see: J. Woweries (2012): Deutscher Ethikrat. Stellungnahme zur
Situation von Menschen mit Intersexualität in Deutschland. Berlin. https://
www.ethikrat.org/fileadmin/PDF-Dateien/Stellungnahmen_
Sachverstaendige_Intersexualitaet/Woweries_-_Expertenbefragung.pdf
“Disorder of Sex Development (DSD)”
is a medical
umbrella term, which was introduced in 2006 by a
Clinician Consensus Statement. Together with new
categories of “syndromes”, it replaced the older medical
terms. Some clinicians use DSD to stand for “differences
of” or “diverse” sex development. However, in all its
forms the term pathologises healthy variations of sex
characteristics and refers to intersex sex characteristics
as characteristics that are “deviant” from the norm of
male and female bodies and thus need to be
“disambiguated” or “fixed”. The term “DSD” does not
align with human rights standards, and is only used in
this document and the accompanying appendix in direct
quotations or when referring to medical concepts that
use the term.
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of the male/female genitalia”.
9
Many of these interventions,
especially but not limited to surgeries, are irreversible,
deferrable, non-emergency interventions on healthy bodies
childhood, without personal and fully informed consent.
11
10
PRE-NATAL INTERvENTIONS
Because being intersex in itself is still seen as a disorder,
when pre-implantation diagnosis or pre-natal screening
show a risk of variations of sex characteristics in embryos
and foetuses, both may be prevented from further
and these interventions most often take place in infancy and
11 See: page 16 and 17
12 S. Monroe, D. Crocetti, T. Yeadon-Lee, with F. Garland and M. Travis (2017):
Intersex, Variations of Sex Characteristics and DSD: The Need for Change.
University of Huddersfield, p. 19-20. http://eprints.hud.ac.uk/id/
eprint/33535/1/Intersex%20Variations%20of%20Sex%20Characteristics%20
and%20DSD%20%20the%20Need%20for%20ChangereportOct10.pdf;
Pressure by doctors to perform even late abortions of an (alleged) intersex
foetus have been reported to OII Europe.
13 There are clear indications that foetal exposure to dexamethasone in
preterm infants causes serious health issues in early adulthood, resulting in
increased risks of heart disease and diabetes, see: Human rights and intersex
people. Issue Paper published by the Council of Europe Commissioner for
Human Rights (2015), p. 20. https://wcd.coe.int/ViewDoc.jsp?Ref=CommDH/Is
suePaper%282015%291&Language=lanEnglish&Ver=original
14 A 2010 medical study found an increased frequency of symptoms
attributable to hypercortisolism in the child-carrying person exposed to
dexamethasone such as oedema and striae after a period of 1–5 years after
the pregnancy, see: M. Merce Fernandez-Balsells, Kalpana Muthusamy, Galina
Smushkin et. al. (2010): Prenatal dexamethasone use for the prevention of
virilization in pregnancies at risk for classical congenital adrenal hyperplasia
because of 21-hydroxylase (CYP21A2) deficiency: a systematic review and
meta-analyses, in: Clinical Endocrinology (2010), 73, 436–444, here: 440.
15 Sweden is the only country that, since 1999, has a policy which,
“restricts prenatal dexamethasone for CAH to women who agreed to
participate in a continuous, prospective, long-term study of the
intervention”, see: A. Dreger et al (2012), p. 285. The long-term study
showed impaired verbal working memory, correlating with the children’s
self-perception of difficulties in scholastic ability and an increased social
anxiety, see: T. Hirvikoski, A. Nordenström, M. Ritzén, A. Wedell, S. Lajic
(2012): Prenatal Dexamethasone Treatment of Children at Risk for
Congenital Adrenal Hyperplasia: The Swedish Experience and Standpoint,
in: The Journal of Clinical Endocrinology & Metabolism 2012 June; 97(6), p.
1881-3. For the 2016 version of the policy see also: Anna Nordenström,
Martin Ritzén (2016): Vårdprogram för kongenital binjurebarkhyperplasi
CAH (adrenogenitalt syndrom, AGS). Barnläkarföreningens sektion för
endokrinologi och diabetes. http://endodiab.barnlakarforeningen.se/
wp-content/uploads/sites/9/2015/02/VP_2016-CAH.pdf
16 Surya Monroe et al. (2017), p. 20-21; J. Woweries (2012), p. 7, 15-17, The
Netherlands Institute for Social Research (2014), p. 44 and 76.
17 See: Amnesty International (2017): First, do no harm. Ensuring the rights of
children with variations of sex characteristics in Denmark and Germany, p. 32
https://www.amnesty.org/download/Documents/EUR0160862017ENGLISH.PDF
18 PACE (2017): Report, Article 41
19 J. Woweries (2012), p. 7-9; N.S. Crouch, C.L. Minto, L.M. Laio, C.R.
Woodhouse, S.M. Creighton (2004): Genital sensation after feminizing
genitoplasty for congenital adrenal hyperplasia: a pilot study. BJU Int.
2004 Jan; 93(1):135-8.
18 PACE (2017): Report, Article 41
19 J. Woweries (2012), p. 7-9; N.S. Crouch, C.L. Minto, L.M. Laio, C.R. Woodhouse,
S.M. Creighton (2004): Genital sensation after feminizing genitoplasty for
congenital adrenal hyperplasia: a pilot study. BJU Int. 2004 Jan; 93(1):135-8.
20 See: Netzwerk Intersexualität (2008): Erste Ergebnisse der Klinischen
Evaluationsstudie im Netzwerk Störungen der Geschlechtsentwicklung/
Intersexualität in Deutschland, Österreich und Schweiz Januar 2005 bis Dezember
2007; a comprehensive summary can be found in J. Woweries (2012), p. 16-17.
developing. In the UK for example, embryos determined to
have intersex variations are on the termination list for
pre-implantation and several parents from different
countries in the Council of Europe region have reported to
OII Europe that they were under huge pressure from doctors
to abort their intersex child.
12
In other cases, prenatal treatment with high-risk off-label
use medication (dexamethasone) is prescribed.
Dexamethasone has proven to be at high risk of long-term
negative effects on the child’s physical health and cognitive
capacity,
13
and also impacts the health of the parent
carrying the child.
14
However, to date only Sweden has
discontinued the use of the drug for foetal treatment.
15
MEDICAL INTERvENTIONS ON
HEALTHY BODIES
Like anybody, intersex people can face health issues. However, in
addition, many intersex people face health issues that they
acquire as a result of human rights violations. After birth, as
children, adolescents and adults, intersex people face violations
of their physical integrity, including medical interventions
without personal, prior, persistent and fully informed consent.
This can cause psychological trauma.
16
Resulting physical
impairments include, but are not limited to, painful scar-tissue
17
and lack of (general and/or erotic) sensation,
18
osteoporosis and
osteopenia already at a very young age after the removal of
gonadal tissue, urinary impairments as a result of interventions
on the urethral tract, including from so-called “hypospadias
repair”and other genital surgeries, and infections.
19
Intersex children face the risk of a disturbed family life due to
medicalisation, which can include extended and/or multiple
hospitalisations, multiple surgeries and/or procedures, invasive
testing, administration of medication including hormone
therapies, and clinical research practices.
20
They are also at risk
of not being able to develop their full potential and of dropping
out of school due to the effects of medicalisation and related
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disability.
21
the 1950s, however, in “an era when pressure to conform to
social norms was often unyielding”, the standard treatment
protocol changed. Infants born with atypical genitalia were
INTERSEX GENITAL MUTILATION
(IGM)
Intersex Genital Mutilation (IGM) is an intervention on a healthy
intersex body. It is performed when, according to societal and
medical notions, a person’s external genitals do not look
“normal” enough to pass as “male” or “female” genitals.
Performing IGM was not always the default practice. Before
the middle of the twentieth century, as a 2016 article of three
General Surgeons of the United States points out, “most
children born with genitalia that did not fit the male-female
“increasingly subjected to surgical procedures such as
clitoral reduction, vaginoplasty, gonadectomy, and
hypospadias repair, primarily to ‘normalize’ gendered
appearance, not to improve function”.
22
MEDICAL INTERvENTIONS ON
INTERSEX INFANTS AND
CHILDREN ARE STILL THE RULE
Surgeries and medical interventions on intersex infants and
children are still common.
23
According to a 2015 survey
published by the EU Fundamental Rights Agency, so-called
sex-“normalising” surgeries on intersex infants and children are
carried out in at least 21 of the EU Member States.
24
Currently,
only Malta and, with certain nuances, Portugal prohibit these
harmful medical interventions. In 2017, the Parlamentary
Assemby of the Council of Europe confirmed in its resolution
21 See also 2.2.2 Education.
22 M. J. Elders, David Satcher, R. Carmona (2017): Re-Thinking Genital Surgeries
on Intersex Infants, p. 1. https://www.palmcenter.org/wp-content/
uploads/2017/06/Re-Thinking-Genital-Surgeries-1.pdf. For a short summary of a
the development of the current practices see Amnesty International (2017), p.
17-19. A comprehensive historical overview is to be found in U. Klöppel (2010):
XX0XY ungelöst. Hermaphroditismus, Sex und Gender in der deutschen
Medizin. Eine historische Studie zu Intersexualität. Bielefeld: Transcript Verlag.
23 See: E. Feder, A. Dreger (2016): Still ignoring human rights in intersex
care”, Journal of Pediatric Urology, 4th of June 2016, p. 1 http://www.
jpurol.com/article/S1477-5131(16)30099-7/
24 See: European Union Agency for Fundamental Rights: FRA Focus Paper. The
Fundamental Rights Situation of Intersex People. Vienna 2015, p. 1 http://fra.
europa.eu/en/publication/2015/fundamental-rights-situation-intersex-people
25 Parliamentary Assembly of the Council of Europe (PACE) (2017):
Resolution 2191 (2017). Promoting the human rights of and eliminating
discrimination against intersex people. Article 2 http://assembly.coe.int/
nw/xml/XRef/Xref-XML2HTML-en.asp?fileid=24232&lang=en
26 European Parliament: Resolution 2018/2878(RSP). The rights of intersex
people, Article 2 http://www.europarl.europa.eu/sides/getDoc.do?pubRef=-//
EP//TEXT+TA+P8-TA-2019-0128+0+DOC+XML+V0//EN&language=EN
27 The revised International Classification of Diseases, ICD-11, for example, still
reaffirms the concept of “disorder” and “malformation” for healthy bodies that
do not conform to social norms of male and female, hence perpetuating stigma
and pathologisation. See: GATE (2017): Submission by GATE to the World Health
Organization: Intersex codes in the International Classification of Diseases (ICD)
11 Beta Draft https://transactivists.org/wp-content/uploads/2017/06/
GATE-ICD-intersex-submission.pdf; see also: GATE (2015): Intersex Issues in the
International Classification of Diseases: a revision, p. 3-4 https://
globaltransaction.files.wordpress.com/2015/10/intersex-issues-in-the-icd.pdf
28 See, e.g.: S2k-Leitlinie Varianten der Geschlechtsentwicklung 2016, p. 5;
see also: 2007 AWMF-Leitlinien (Arbeitsgemeinschaft der
Wissenschaftlichen Medizinischen Fachgesellschaften) der Gesellschaft
für Kinderheilkunde und Jugendmedizin: Störungen der
Geschlechtsentwicklung (DSD); see also J. Woweries (2012), p. 12.
Promoting the human rights of and eliminating discrimination
against intersex people
that it considers these kind of surgeries
to be “serious breaches of physical integrity” and highlighted
that they are performed “despite the fact that there is no
evidence to support the long-term success of such treatments,
no immediate danger to health and no genuine therapeutic
purpose for the treatment”.
25
In 2019, the European Parliament
emphasised in its resolution
The rights of intersex people
that it
“strongly condemns sex-normalising treatments and surgery”
and that it encourages “Member States to adopt similar
legislation as soon as possible.”
26
Unfortunately, the international medical guidance and
systems do not yet fully align with international human
rights standards.
27
This is informed by much of the content
covered in this introduction, including the biased and
stereotyped cultural views that people, including doctors,
continue to hold.
Fortunately, some clinicians have become more reluctant to
perform certain surgeries at a very early age. This has been
especially the case with hormone producing gonads, e.g.
intraabdominal testes on infants, which were previously
removed by default on the basis of an unverified cancer
risk.
28
Some clinicians now opt for not operating and,
instead, monitoring this tissue.
29
11
PROTECTING INTERSEX PEOPLE IN EUROPE:
A TOOLKIT FOR LAW AND POLICYMAKERS
trauma, such as post-traumatic stress disorder, chronic illness or
binary norm were not subjected to surgery”. Beginning with
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However, this thinking is mostly reserved for those children whose
sex, according to medical professionals, is not determinable as male
or female.
30
Other intersex children, whose sex is considered
determinable,
31
are still considered to “benefit” from early invasive
cosmetic treatment.
32
It is crucial to understand, however, that the
surgeries performed on those children are the same deeply invasive
interventions,
33
which reportedly lead to scar tissue, loss of
sensation, multiple follow up surgeries, problems with hormonal
balance, trauma and other physical and psychological impairments.
FGM AND IGM –
COMMONALITIES TO CONSIDER
While many legal contexts do not explicitly address intersex
genital mutilation (IGM), female genital mutilation (FGM) is
widely addressed in the European legal landscape.
34
This
legal differentiation, though, is largely arbitrary, and based
in the same cultural assumptions and stereotypes that
threaten the rights of intersex people to begin with.
QUICK GUIDE TO FGM AND IGM COMMONALITIES
FGM and IGM share many common characteristics, but vastly different explicit legal standards are in place. Here are
explanations of some of the commonalities:
their childhood and teenage years did not improve their situation concerning social inclusion or marginalisation.
Framed in terms of the need to be accepted socially;
however, for many intersex people, surgeries in
Motivated by beliefs about what is considered acceptable sexual behaviour;
in the case
of intersex people, the ultimate goal of those performing IGM is to allow for penetrative intercourse of the
future adult and for an alleged ability to procreate. Neither the impossibility to foresee the future intersex
adult’s gender identity, sexual orientation or sexual preference, nor the fact that the capacity for penetrative
intercourse may be less important for the intersex adult than unharmed genitalia are taken into account.
Motivated by the notion that parts that are not considered female (or male) enough
should be removed;
in the case of intersex people this includes interventions on infants and children such
as clitoris reduction/recession, removing the labia, moving the opening of the urethra to the tip of the penis, to
name but a few.
Impactful on the person’s life and health;
in the case of intersex people this includes impairment of
sexual sensation, poorer sexual function, painful scarring, painful intercourse, increased sexual anxieties,
problems with desire, infertility issues and lifelong trauma, including feelings of child abuse and sexual abuse.
29 Amnesty International (2017), p. 28; see also: Creighton, S.M., L. Michala, I. Mushtaq, and M. Yaron (2014): Childhood surgery for ambiguous genitalia:
Glimpses of practice changes or more of the same?, in: Psychology and Sexuality 5(1): 34–43; see also for mixed developments in the U.S.: Human Rights
Watch, InterACT (2017): A Changing Paradigm.US Medical Provider Discomfort with Intersex Care Practices, p. 22-27 https://www.hrw.org/
report/2017/10/26/changing-paradigm/us-medical-provider-discomfort-intersex-care-practices
30 E.g. intersex individuals diagnosed with CAIS (Complete Androgen Insensitivity Syndrome).
31 E.g. intersex children diagnosed with CAH (Congenital Adrenal Hyperplasia) and XX chromosomes
.
32 A 2016 German study on the number of genital surgeries performed in Germany on intersex children up to the age of ten found that the numbers of
interventions stayed the same between 2005 and 2014, but that the underlying diagnoses had changed: the relative frequency of “classic” intersex
diagnoses such as “pseudo-hermaphroditism” had decreased, while the frequency of unspecified diagnoses, like “unspecified malformation of the female/
male genitalia” remained constant or even increased. U. Klöppel (2016), p. 34; OII Europe member organisations have found this diagnostic shift, through
their peer and parent counselling, to be happening in their countries as well. A 2019 follow up study showed that the number of interventions did not go
down in the subsequent years, see: J. Hoenes, E. Januschke, U. Klöppel (2019): Häufigkeit normangleichender Operationen „uneindeutiger“ Genitalien im
Kindesalter. Follow Up‐Studie. Bochum. https://omp.ub.rub.de/index.php/RUB/catalog/view/113/99/604-2.
33 See: U. Klöppel (2016), p. 4-5.
.
34 For examples, see: https://ec.europa.eu/info/policies/justice-and-fundamental-rights/gender-equality/gender-based-violence/
eliminating-female-genital-mutilation_en
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about male and female bodies is common ground shared by
FGM and IGM. Like FGM, intersex genital mutilation is carried out
for cultural reasons, which, in the case of IGM, are based on the
prevailing notion of the binary of human sexes.
35
In a binary
society “being human” is strongly connected – in everyday life as
well as legally – to “being male” or “being female”, to being a
“man” or a “woman”. Within that cultural construct, the birth of
an intersex child has been treated since the 1950s as a “psycho-
social emergency” that needs to be “fixed” by medical means, in
order to “prevent parental distress”, to “protect” the child from
experiencing discrimination as a result of their “ambiguous”
genitalia and/or to prevent “lesbianism”, “tomboyism” or a
“gender identity disorder” in the child; and while doing so, the
intersex individual’s human rights to bodily autonomy and bodily
integrity have been violated, often egregiously.
In 2014, the 24th Conference of Equality and Women Ministers
and Senators of the German Länder (GFMK) pointed to the
similarities between IGM and FGM and called for implementing
a corresponding standard of protection for intersex children.
The GFMK pointed out that “family law already prohibits
guardians from consenting to the sterilisation of a child (§ 1631c
BGB)” and that, “in the case of girls, parents cannot give
effective consent to the removal or circumcision of the clitoris,
as this is punishable as female genital mutilation (§ 226a StGB)”,
but that intersex minors were “in fact often denied this
protection by carrying out procedures that have a sterilizing
effect or that alter the genitals of intersexual minors without
their consent and without compelling medical indication”.
39
36
genital mutilation decided to include victims of intersex genital
mutilation in their supporting structure through the provision of
essential services (medical, psychological and legal).
40
SOCIAL NORMS CAUSE HUMAN
RIGHTS vIOLATIONS
Most societies are structured along the supposed binary of
sexes. These societal systems make those who do not fit into
the male-female binary especially vulnerable to violations of
their bodily integrity, discrimination, harassment, violence in
medical settings, or bullying at school and in their job life.
The human rights violations intersex people face are rooted in
what bioethicist George Annas has called “monster ethics”, as
pointed to by a surgery-critical article published in 2016 in the
Journal of Pediatric Urology:
“Babies with atypical sex are not [considered] yet fully human,
and so not entitled to human rights. Surgeons make them
human by making them recognizably male or female, and
only then may they be regarded as entitled to the sexual and
medical rights and protections guaranteed to everyone else
by current ethical guidelines and laws.”
41
INTERSEX PEOPLE ARE
DISCRIMINATED AGAINST
At every age, intersex people can face stigma, structural
discrimination, harassment, lack of adequate medical care,
lack of access to needed medication, lack of access to justice,
35 United Nations Office of the High Commissioner for Human Rights (2015), p. 1.
36 M.J. Elders et. al. (2017), p. 1; U. Klöppel (2010), p. 314-318, 479.
37 See: M. J. Elders et. al. (2017), p. 2.; see also: S2k-Leitlinie Varianten der
Geschlechtsentwicklung 2016. Leitlinie der der Deutschen Gesellschaft für
Urologie (DGU) e.V., der Deutschen Gesellschaft für Kinderchirurgie (DGKCH)
e.V., der Deutschen Gesellschaft für Kinderendokrinologie und -diabetologie
(DGKED) e.V., p. 5 https://www.awmf.org/uploads/tx_szleitlinien/174-001l_
S2k_Geschlechtsentwicklung-Varianten_2016-08_01.pdf
38 See J. Woweries (2012), p. 7.
39 See: 24. Konferenz der Gleichstellungs- und Frauenministerinnen und
-minister, -senatorinnen und -senatoren der Länder (GFMK) (2014):
Tagesordnungspunkt 8.1: Rechte intersexueller Menschen wahren und
Diskriminierung beenden – insbesondere Schutz der körperlichen
Unversehrtheit https://www.gleichstellungsministerkonferenz.de/
documents/2014_10_13_beschluesse_gesamt_extern_2_1510227377.pdf
(translated from German by the author)
40 http://www.npwj.org/sites/default/files/ressources/Declaration%20
in%20EN_rev.pdf
41 E. Feder, A. Dreger (2016): p. 1.
and the invisibility of their bodies in our society.
42
Intersex
people often face employment discrimination based on
their appearance or gender expression. Due to
hospitalisation or trauma-related mental health problems,
intersex people may need to take time off. Gaps in their
education or employment history might be difficult to
explain to employers. There is a reportedly higher risk of
poverty due to lack of education as a result of
pathologisation and related trauma.
INTERSEXPHOBIA EXISTS
Intersexphobia, or interphobia, can be defined as a range of
negative attitudes (e.g. emotional disgust, fear, violence,
13
PROTECTING INTERSEX PEOPLE IN EUROPE:
A TOOLKIT FOR LAW AND POLICYMAKERS
Social pressure to conform to gender roles and stereotypes
In 2017, the BanFGM Conference on the worldwide ban on female
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anger, or discomfort) felt or expressed towards people whose
sex charactristics do not conform with society’s expectations
of how the sex charateristics of a person, understood only as
male or female, should look. Very often the same range of
negative attitudes is also expressed towards the biological
fact that sex is a spectrum, and that, therefore, variations of
sex characteristics other than the male or female variations
exist. The human rights violations intersex people face as a
result of societal intersexphobia include, among others,
pathologisation and genital mutilation (IGM).
Very often, parents are immediately confronted with complex
medical explanations about the so-called “condition” of their
42 Parliamentary Assembly of the Council of Europe (PACE) (2017): Resolution
2191 (2017). Promoting the human rights of and eliminating discrimination
against intersex people. Doc. 14404 Report, Part C Articles 29, 49, 61, 68, 69
https://bit.ly/2gfohnV; Commissioner for Human Rights of the Council of Europe
(2015), p. 29-51; see also: Swiss National Advisory Commission on Biomedical
Ethics (2012): On the management of differences of sex development. Ethical
issues relating to “intersexuality”. Opinion No. 20/2012, p. 13-14 http://www.
nek-cne.ch/fileadmin/nek-cne-dateien/Themen/Stellungnahmen/en/
NEK_Intersexualitaet_En.pdf; see also: Conseil d’Etat (2018): Revision de la loi
bioéthique: quelles option pour demain? 2.4. Les enfants dits « intersexes » : la
prise en charge médicale des enfants présentant des variations du
développement génital, p. 132 https://www.dalloz-actualite.fr/sites/dalloz-
actualite.fr/files/resources/2018/07/conseil_detat_sre_etude_pm_bioethique.
pdf; Deutscher Ethikrat (2012): Intersexualität. Stellungnahme, p. 82, S. 49, 56-59,
82, 154-155, 165 https://www.ethikrat.org/fileadmin/Publikationen/
Stellungnahmen/deutsch/DER_StnIntersex_Deu_Online.pdf; see also: S.
Monroe et. al. (2017), p. 21; The Netherlands Institute for Social Research (2014), p.
48-50; Dan Christian Ghattas (2013): Human Rights Between the Sexes. A
preliminary study on the life situation of inter* individual. Ed. by the Heinrich
Böll Foundation. Berlin, p. 22, 23 and 27 https://www.boell.de/sites/default/files/
endf_human_rights_between_the_sexes.pdf
43 From the text of the 2017 Maltese law, “expert-sensitive” refers simultaneously to
explicit expertise coupled with sensitivity through tailored education programmes.
44 See: A. Krämer, K. Sabisch (2017), p. 31-34; Amnesty International (2017),
p. 24, 39-40 .
45 Even parents who are medical practitioners themselves have reportedly
not been able to follow the explanations given by the doctor in charge, see:
A. Krämer, K. Sabisch (2017), p. 32.
46 A. Krämer, K. Sabisch (2017), p. 33; Amnesty International (2017), p.23;
Commissioner for Human Rights of the Council of Europe (2015), p. 23.
47 PACE (2017): Resolution 2191 (2017), Article 3.
48 Commissioner for Human Rights of the Council of Europe (2015), p. 37.
49 See: Bundesministerium für Familie, Senioren, Frauen und Jugend (2016.b):
Dokumentation Fachaustausch: „Beratung und Unterstützung für intersexuelle
Menschen (i. S. v. Menschen mit angeborenen Variationen der Geschlechtsmerkmale)
und ihre Familien“ 4. November 2015. Begleitmaterial zur Interministeriellen
Arbeitsgruppe Inter- & Transsexualität – Band 3. Berlin, p. 14 https://www.bmfsfj.de/bl
ob/123144/40905d00b0bc5d9722523bb6f9e29824/imag-band-3-beratung-und-
unterstuetzung-fuer-intersexuelle-menschen-data.pdf
50 A. Krämer, K. Sabisch (2017), p. 33.
51 Amnesty International (2017), p. 26.
52 See: Bundesministerium für Familie, Senioren, Frauen und Jugend (2016.b), p. 14.
53 A. Krämer, K. Sabisch (2017), p. 28.
54 In order to reassure parents of an intersex child and give them low-
threshold access to needed information, OII Europe has joined forces with
IGLYO and EPA to create a parent’s guide, see: OII Europe, IGLYO, EPA (2018):
Supporting your intersex child https://oiieurope.org/parents-guide/
PROTECTION STARTS WITH
SUPPORTING PARENTS
Having an intersex child is completely natural. However, this
is not the information provided to many parents of intersex
children. When a child is identified as intersex at birth,
parents usually have to cope with the news without any
independent expert-sensitive
43
psycho-social counselling.
44
new-born child.
45
These are often further accompanied by
offers or even the pressure to proceed with medical treatments
that will allegedly “fix” the child. The information delivered by
medical practitioners often lacks clarity about the actual health
status of the child.
46
As the 2017 PACE Resolution 2191 points
out, this kind of medicalised counselling puts parents under
pressure to make “life-changing decisions on behalf of their
child, without having a full and genuine understanding of the
long-term consequences for their children”.
47
In everyday life, parents often feel lost about how to
communicate to family members, friends or just people they
meet on the street that the question “Is it a boy or a girl?” does
not fit their child.
48
Of the parents participating in a 2015 German
survey, 83% felt that there was a severe lack of counselling on
how to handle the fact of having an intersex child within their
social environment, i.e. in everyday life, with neighbours,
teachers, or in kindergarten. 72% felt the need to be supported
in how to speak about being intersex within their families.
49
Taboo and shame about variations of sex characteristics, still
prevailing in society, can lead parents to believe that their
child will not be able to lead a happy and fulfilled personal
and family life in the future.
50
Their own beliefs about sex,
gender and gender roles can also create feelings of guilt and
shame.
51
However, 80% of the participating parents wanted
to acknowledge their child’s physical sex development as it
is, and wished for counselling on that matter.
52
The social pressure parents face, traumatising experiences in
medical settings, lack of support in understanding the
medicalised information they get from doctors, and lengthy
examinations of their new-born child, can put parents at risk of
high levels of stress, including the risk of developing post-
traumatic stress syndromes.
53
Therefore, parents clearly need
support as well.
54
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PROTECTING INTERSEX PEOPLE AGAINST
vIOLATIONS OF THEIR RIGHT TO BODILY
INTEGRITY
After birth, as children, adolescents and adults, many
intersex people face violations of their physical integrity,
including medical interventions without personal, prior,
persistent and fully informed consent. These interventions
reportedly cause severe physical impairments, ranging from
painful scar-tissue or lack of sensation to osteoporosis and
urethral issues, as well as psychological trauma. In regards to
psychological trauma, evidence and research have shown
that infants and very young children already do experience
physical as well as psychological trauma and that it impacts
them later in life.
55
Invasive, irreversible and non-emergency medical
interventions should only be performed on a mature
individual who explicitly wishes for these interventions and
has given their personal and fully informed consent. Infants
and children are future adults who will develop gender
identities and sexual orientations specific to them, will take
their own decisions, and will make their own choices in
regards to their personal and professional lives. An intact
body, which allows for a multiplicity of choices in the future
adult’s life, is key to ensuring the right to self-determination
of not only the child but also the future adult.
OII Europe and ILGA-Europe recommend the creation of a
law that protects a person from any non-emergency
interventions on the person’s sex characteristics until the
person is mature enough to express, if they want, their
wish for surgical or other medical intervention and
provide informed consent.
Such legislation is the only
way to stop the violation of the bodily integrity of
intersex people and ensure their right to
self-determination.
In its 2017
Resolution Promoting the human rights of and
55 M.J. Elders et. al. (2017), p. 2; S. Monroe et. al. (2017), p. 2; GATE (2015), p.
4; The Netherlands Institute for Social Research (2014), p. 33-37; J.
Woweries (2012), p. 7-8. See also: PACE (2017): Report. Part C Articles 25, 26;
Commissioner for Human Rights of the Council of Europe (2015), p. 14;
United Nations Office of the High Commissioner for Human Rights (2014),
p. 1; Swiss National Advisory Commission on Biomedical Ethics (2012), p.
13. A study conducted for the German Ethic Counsel found that 25% of the
intersex people participating in the study had been seeking psychological
help and that this occurred twice as often after than before a medical
intervention, see: Deutscher Ethikrat (2012): p. 71.
eliminating discrimination against intersex people,
the
Parliamentary Assembly of the Council of Europe has called
on Member States to “prohibit medically unnecessary
sex-‘normalising’ surgery, sterilisation and other treatments
practised on intersex children without their informed
consent”; and to ensure “that, except in cases where the life
of the child is at immediate risk, any treatment that seeks to
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PROTECTION: Putting
an end to human rights
violations of intersex
people
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alter the sex characteristics of the child, including their
gonads, genitals or internal sex organs, is deferred until such
time as the child is able to participate in the decision, based
on the right to self-determination and on the principle of
free and informed consent”.
56
l
allows a mature minor to seek a treatment aiming to
alter their sex characteristics, which shall be conducted if
the minor gives informed consent.
l
establishes the right to expert-sensitive and
individually tailored, life-long psychological and psycho-
social support for intersex individuals, their parents and
their families.
CURRENT BEST PRACTICES
The Maltese Gender Identity,
Gender Expression and Sex
Characteristics Act
57
is still to be considered a best
practice example on how to put these recommendations
into law. The Act, among other measures,
l
provides clear and human rights-based definitions of
terminology (e.g. sex characteristics).
l
makes a distinction between treatments that address
an actual health need of a person, and surgeries and other
medical interventions that are cosmetic, deferrable and
performed for social reasons.
l
prohibits any sex-“normalising”, sex-“assigning” or
sex-altering treatment and/or surgical intervention on the
sex characteristics of a minor that could be deferred until
a time when the minor is able to make their own decision
and provide informed consent.
l
allows for surgery and other medical treatment on an
infant’s or child’s sex characteristics in cases where the infant’s
or child’s life is at immediate risk, provided that any medical
intervention which is driven by social factors without the
consent of the minor is a violation of the law.
l
provides for legal consequences in case the law is
breached.
PERSONAL, PRIOR, FREE AND
FULLY INFORMED CONSENT IS
KEY
The 2013 Parliamentary Assembly of the Council of Europe
(PACE)
Resolution 1945: Putting an end to coerced sterilisations
and castrations
defines fully informed consent as follows:
Fully informed consent:
l
includes, that the person has been informed
comprehensively and without bias about all possible options.
l
is not given if the person agrees to an intervention
without having been fully informed, and
l
is not given if the person has been pressured or
(emotionally) coerced into agreeing. Especially in health
settings this includes all pressure that diminishes a
patient’s autonomy, as well as non-adressed power
imbalances in the patient–care provider relationship
“which may impede the exercise of free decision making,
for example by those who are not accustomed to
challenging people in positions of authority”.
58
56 PACE Resolution 2191 (2017), Article 7.1.1 and 7.1.2.
57 ACT XI of 2015, as amended by Acts XX of 2015 and LVI of 2016 and XIII
of 2018 http://justiceservices.gov.mt/DownloadDocument.
aspx?app=lom&itemid=12312&l=1
58 PACE Resolution 1945 (2013): Putting an end to coerced sterilisations
and castrations, Article 2 http://assembly.coe.int/nw/xml/XRef/Xref-
XML2HTML-en.asp?fileid=19984&lang=en
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In regards to intersex individuals, we often speak of the necessity of personal, prior, free and fully informed consent.
and that parent or care-taker or medical porfessional cannot substitute for the intersex person’s consent.
“Personal”
emphasises that only the intersex individual themself is able to consent to such an intervention
“Prior”
refers to the timing of the consent, such that specific consent must take place before the
intervention for which it is sought. For example, there is a common experience such that although parental or
individual consent was given for a specific intervention, additional surgeries or interventions were
simultaneously performed without consent, then followed by an attempt to gather consent after the fact for
the additional interventions.
“Free”
refers to the impact of power dynamics that may diminish a person’s autonomy and pressure that may
impact the individual’s ability to consent. For example,reportedly pressure from healthcare providers has lead
intersex adults to consent to an intervention that they did not want just to finally have that pressure cease.
“Fully informed”
emphasises the need for the provision of the full variety of information and opinions on
an intervention, including de-medicalised information.
WHAT TO DO?
In order to ensure intersex people’s right to health,
self-determination and bodily integrity, States should
create laws that explicitly:
l
establish the right to expert-sensitive and individually
tailored psycho-social
counselling
and support for all
concerned individuals and their families, from the time of
diagnosis or self-referral, for as long as necessary.
l
prohibit
medical practitioners and other
professionals from conducting any irreversible, non-
emergency sex-“normalising”, sex-“assigning” or sex-
altering surgical or other interventions on a person’s sex
characteristics unless the intersex person has provided
personal, free and fully informed consent.
l
extend the
retention period for medical records
of
surgical and other interventions that aim to alter the
genitals, gonads, reproductive organs or hormonal set-up,
including consultation minutes, to a minimum of 40 years
in order to allow intersex people access to their medical
records at a mature age.
l
establish adequate
legal sanctions
conducting any
irreversible, non-emergency sex-“normalising”, sex-
“assigning” or sex-altering surgical or other interventions
which can be deferred until the intersex person is
mature enough to provide informed consent.
l
extend the
statutes of limitations
for surgical and/or
other interventions that aim to alter the genitals, gonads,
reproductive organs or hormonal set-up of a person to at
least 20 years, and suspend them until the minimum age
of 21 of the person concerned.
l
establish an
independent working group,
composed
in equal parts of human rights experts, intersex peer
experts, psycho-social professionals and medical
experts, to review and revise current treatment protocols
to bring them in line with current medical best practice
and human rights standards within a limited period of
time laid down in the law.
l
allow for surgical and/or other reversible and
irreversible interventions to be conducted on a
mature
minor’s
sex characteristics, if explicitly wished for by the
mature minor and provided the mature minor gives
personal and fully informed consent.
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s
in the case of a mature minor seeking treatment to
Malta (2015) Gender Identity, Gender
Expression and Sex Characteristics Act
14. (1) It shall be unlawful for medical practitioners
or other professionals to conduct any sex
assignment treatment and, or surgical intervention
on the sex characteristics of a minor which
treatment and, or intervention can be deferred until
the person to be treated can provide informed
consent:
Provided that such sex assignment treatment and,
or surgical intervention on the sex characteristics of
the minor shall be conducted if the minor gives
informed consent through the person exercising
parental authority or the tutor of the minor.
alter their sex characteristics, establish the presence
of an
independent third party,
who is neither a parent
nor legal guardian nor a medical professional treating
the minor; the independent party shall take part in the
process, in order to guarantee that the consent of the
minor is giving freely, and with fully informed consent.
l
establish the
legal obligation
for medical
professionals in regards to all surgical and other
interventions that aim to alter the genitals, gonads,
reproductive organs or any hormonal set-up:
s
to
inform
the mature individual comprehensively
about the treatment, including other possible medical
options and details about risks and possible long-term
consequences and effects, based on up-to-date
Parliamentary Assembly of the Council of
Europe (2017): Resolution 2191 (2017).
Promoting the human rights of and
eliminating discrimination against
intersex people
7.1. with regard to effectively protecting children’s
right to physical integrity and bodily autonomy and
to empowering intersex people as regards these
rights:
7.1.1. prohibit medically unnecessary* sex-
“normalising” surgery, sterilisation and other
treatments practised on intersex children without
their informed consent;
medical information;
s
to
provide detailed minutes
of the consultation,
including all of the above information, which is
provided to the patient and in addition, in case of a
minor, to their parent(s) or legal guardian(s).
l
end the coverage of intersex genital mutilation
by the
public and private health systems.
l
ensure that regulations and practices in public and
private sectors, e.g. in international competitive sport,
59
do not bypass national protection and anti-discrimination
legislation
and provisions.
European Parliament (2019): Intersex
Resolution
2. Strongly condemns sex-normalising treatments
and surgery; welcomes laws that prohibit such
surgery, as in Malta and Portugal, and encourages
other Member States to adopt similar legislation as
soon as possible;
59 In April 2018, IAAF introduced “Eligibility Regulations for Female
Classification (Athlete with Differences of Sex Development)” for
international events, including 400m, hurdles races, 800m, 1500m, one mile
races and combined events over the same distances (‘Restricted Events’). All
intersex women whose testosterone level exceeds 5 nmol/L will be forced
to take drugs that supress their natural testosterone level in order to be
eligible; see: https://www.iaaf.org/news/press-release/eligibility-
regulations-for-female-classifica. However, as the Office of the United
Nations High Commissioner for Human Rights (OHCHR) has pointed out,
“being intersex of itself does not entail better performance, whereas other
physical variations that do affect performance [...] are not subjected to such
scrutiny and restrictions”; see: United Nations (2015): Free & Equal. Fact
Sheet Intersex, p. 2; https://unfe.org/system/unfe-65-Intersex_Factsheet_
ENGLISH.pdf. The 2019 UN Human Rights Council resolution on the
“Elimination of discrimination against women and girls in sport” notes with
concern that the IAAF regulation “may not be compatible with international
human rights norms and standards” and called upon States to “ensure that
sporting associations and bodies implement policies and practices in
accordance with international human rights norms and standards, and
refrain from developing and enforcing policies and practices that force,
coerce or otherwise pressure women and girl athletes into undergoing
unnecessary, humiliating and harmful medical procedures in order to
participate in women’s events in competitive sports”; see: A/HRC/40/L.10/
Rev.1, p.2 and appendix for more details.
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COMMON PITFALLS TO AvOID
In addition to highlighting best practices, it is also
important to note when well-intentioned attempts at
protecting intersex people have fallen short or created
unexpected problems.
intersex infant’s life is at risk and immediate treatment is
actually indicated/necessary.
60
All other interventions,
despite being deferrable, are presented as equally “medically
necessary”, based on a misconception of what constitutes a
societal problem and what is medically indicated. Evidence
shows that instead of increasing an intersex individual’s
health, interventions “too often lead to the opposite result”.
61
Despite this contrary evidence as well as a lack of positive
evidence, many medical guidelines still recommend invasive
surgeries and other invasive medical treatments on intersex
individuals as a medical necessity,
62
thus reinforcing the
medical indication as determined by doctors.
Any law aiming at preventing harmful practices performed
on intersex people in medical settings should not use
medical concepts like “medically indicated and “medically
necessary” as indicators of the lawfulness of an
intervention, as the current definition of these concepts is
flawed and continues to carry the high risk of depriving
intersex individuals of the enjoyment of their human
rights. If these terms are used, they should be clearly
defined as referring to actual physical health needs
63
and
life-saving treatments.
Which terminology can be
challenging in regards to
implementation of a laW?
Some terminology, which may seem to be an obvious
choice from the perspective of self-determination and
trust in the existing healthcare system has proven to be
rather problematic when it comes to ensuring effective
protection of intersex people’s bodily integrity. OII Europe
and ILGA-Europe therefore recommend policy-makers to
not use
the following terms in order to avoid ambiguity
and legal loopholes.
In cases where these terms have been included in
legislation, specific caution should be paid to
implementation in order to prevent undesired
circumventions of the law and guarantee intersex people’s
access to justice.
“medically necessary” or “medically indicated”
Since the 1950s, medical interventions and treatments on
intersex children have been considered to be “medically
necessary” and “medically indicated” and have been
covered by public and private health insurances.
Decisions as to whether a certain treatment is medically
necessary mainly lie with the doctor as the medical expert.
“manifestation of a child’s gender identity”
There are two significant issues with this language. Firstly,
it reinforces biological essentialism and its related
assumptions that physical sex characteristics should be
linked to gender identity (i.e. someone who identifies as
male must have a penis, and when a penis is not present,
one must be constructed to validate his “maleness”;
someone who does not have a vagina cannot be a
“woman”) – a concept heavily embedded into the social
constructions of sex and gender and directly linked to
violations of human rights such as coerced sterilisations
and forced surgeries on the bases of gender identity,
gender expression, and sex characteristics.
60 Two life-threatening conditions that can occur with some intersex
variations (but are not limited to intersex individuals): salt-wasting
syndrome and the closure of the urethra. Salt-wasting does not require
surgery but only treatment. The closure of the urethra leads to self-
poisoning and therefore must be opened by surgical means, see J.
Woweries (2012), p. 4; however, these kind of surgeries have been used to
do purely cosmetic surgery at the same time. See also: Swiss National
Advisory Commission on Biomedical Ethics (2012), p. 14.
.
61 M. J. Elders et. al. (2017), p. 2.
62 Amnesty International (2017), p. 8, 18, 34, 50-51; Human Rights Watch,
InterACT (2017), p. 8
63 For what “medically necessary” actually encompasses see: Conseil
d’Etat (2018), p. 135-137, 140, see Appendix for a translation into English.
Furthermore, many deferrable interventions on intersex
children are carried out at a very young age. Referring to
treatments being postponed until “the child’s gender
identity manifests” carries the high risk that parents and/
or doctors may believe or declare the child’s gender
identity to be “manifested” in order to carry out deferrable
and irreversible interventions on the child’s sex
characteristics. Children depend on their caregivers and
are especially vulnerable to pressure from adults. It is very
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However, there are few and relatively rare cases in which the
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unlikely that a younger child, or even an older child, will
have the capacity to defend themselves when pressure to
“consent” is put on them, or be able to identify when the
information provided to them is biased or incomplete.
procreate and would thus not fall under legislation that
prohibits sterilisation.
67
treatment codes are not legally
secure
It is important to bear in mind that diagnostic processes
and the way treatments are coded within the national
health systems and health insurance coverage systems
are not exact science and leave a lot of room to
manoeuvre.
It is quite common to combine different interventions:
sterilisation, for example, can be performed at the same
time as a hernia operation, or a surgery on the urethra
will be combined with a reduction of the clitoris.
Depending on the way these treatments are coded in the
national health system, the treatment necessary to
maintain the person’s vital functions can be coded as the
primary intervention and may cover up the second, purely
cosmetic part of the surgery. In addition, how procedures
are carried out and how they are referred to can and does
change. Therefore, banning specific procedures through a
list of codes does not offer adequate legal protection.
existing legislation (e.g. against
sterilisation or fgm) is not enough
Experience shows that legislation such as legislation
prohibiting sterilisation, laws prohibiting (female) genital
mutilation or patient rights legislation do not protect
intersex people from violations of their bodily integrity. In
2015, the EU Fundamental Rights Agency (FRA) found that
“sex (re)assignment or sex-related surgery seems to be
performed on intersex children, and young people, in at
least 21 EU Member States”.
64
Many of these countries
have laws against (unconsented) sterilisation and/or
sterilisation of minors
65
and against FGM.
66
The different
treatment of IGM and FGM is even more striking when
considering that many intersex individuals who
experience IGM are registered as female, and, hence, have
their genitalia operated on while legally registered as
girls without their wish or consent.
In addition, only a portion of the surgeries performed on
intersex individuals include sterilisation. With some
variations of sex characteristics, medical interventions are
performed to facilitate a presumed future capacity to
64 European Union Agency for Fundamental Rights: FRA Focus Paper. The
Fundamental Rights Situation of Intersex People. Vienna 2015, p. 6 http://
fra.europa.eu/en/publication/2015/
fundamental-rights-situation-intersex-people
65 The findings of the German Family Ministry, however, showed that the
German sterilisation legislation (§ 1631c BGB), is not impervious when it
comes to intersex children, as their gonadal hormone producing tissue
may not be considered equivalent to testes or ovaries, see also:
Bundesministerium für Familie, Senioren, Frauen und Jugend (2016.a):
Situation von trans- und intersexuellen Menschen im Fokus.
Sachstandsinformation des BMFSFJ. Begleitmaterial zur Interministeriellen
Arbeitsgruppe Inter- & Transsexualität – Band 5. Berlin, p. 19. https://www.
bmfsfj.de/blob/112092/f199e9c4b77f89d0a5aa825228384e08/imag-band-
5-situation-von-trans-und-intersexuellen-menschen-data.pdf
66 All EU Member States criminalise female genital mutilation, either by
incorporating it in in general criminal law or by explicitly mentioning it in
a specific provision or law; 18 countries have a specific criminal law on
female genital mutilation, see: European Institute for Gender Equality
(EIGE, 2018): Estimation of girls at risk of female genital mutilation in the
European Union Belgium, Greece, France, Italy, Cyprus and Malta, p. 16.
https://eige.europa.eu/rdc/eige-publications/
estimation-girls-risk-female-genital-mutilation-european-union-report-0
67 M. J. Elders et. al. (2017), p. 2; Swiss National Advisory Commission on
Biomedical Ethics (2012), p. 13; J. Woweries (2012), p. 5.
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PROTECTING INTERSEX PEOPLE FROM
DISCRIMINATION IN ALL AREAS OF LIFE
Intersex people have the same human rights as everyone
else. However, as with other minority groups, a specific
ground on which they are protected helps to make sure
they are acknowledged as having these rights and can
access justice. This protective ground entails
discrimination and other human rights violations that may
be more specific to them than to other parts of the
population.
l
Recognition:
The ground of “sex characteristics”
allows bodily diversity and the diversity of the human
sexes to be acknowledged and legally recognised.
l
Visibility:
As long as the ground of “sex
characteristics” does not exist, it is difficult for an intersex
victim to be aware that they are legally protected against
discrimination and harassment. The notion of the “binary
of sexes” is widespread, which often leads to intersex
people having to explain their existence and to educate
lawyers and judges while being in a very vulnerable
position.
intersex people must be protected
under the ground of “sex
characteristics”
In the past few years, “sex characteristics” has been
established as the adequate and human rights-based
ground to protect intersex people/people with variations
of sex characteristics. It has also been referred to in a
number of human rights instruments and legislations.
68
OII Europe and ILGA-Europe advocate for protecting
intersex people under the specific ground of “sex
characteristics” for the following reasons:
l
Clarity:
The physical characteristics a person was
born with may or may not be part of their gender identity
or gender expression. Regardless of their conforming or
non-conforming gender identity or gender expression, a
person can face violence, discrimination and/or
harassment on the basis of their sex characteristics.
Situations like this can occur, for example, when a person
needs to undress in locker rooms or in medical settings, or
when they need medical examination and/or treatment of
a body part that is not considered to “naturally” belong to
the person’s assigned sex/gender. If, for example, an
intersex person is not able to get a medical preventive
check-up because of an alleged mismatch of the
respective organ and the sex/gender on their ID or health
insurance card, the discrimination happens regardless of
whether the person’s gender identity or gender
expression conforms to societal expectations or not.
However, the discrimination is clearly related to the
person’s sex characteristics.
l
Universality:
All human beings have sex
characteristics. Therfore, as with “sexual orientation” or
“gender identity”, the ground “sex characteristics” applies
to all human beings. Intersex people are specifically
vulnerable to facing violence, discrimination and
harassment on the grounds of their physical sex
characteristics. Different from “intersex” or “intersex
status”, however, the ground of sex characteristics does
not carry the risk of excluding some intersex people on
the basis of a narrow definition of who is to be considered
intersex or not.
l
Equality and equity:
All individuals, regardless of
their sex characteristics, deserve to be treated equally and
to be protected from discrimination and other human
rights violations.
68 See, e.g.: PACE Resolution 2191 (2017), Article 7.4.
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WHAT TO DO?
Parliamentary Assembly of the Council of
Europe (2017): Resolution 2191 (2017).
Promoting the human rights of and
eliminating discrimination against
intersex people
7.4. with regard to combating discrimination against
intersex people, ensure that anti-discrimination
legislation effectively applies to and protects
intersex people, either by inserting sex
characteristics as a specific prohibited ground in all
anti-discrimination legislation, and/or by raising
awareness among lawyers, police, prosecutors,
judges and all other relevant professionals, as well
as intersex people, of the possibility of dealing with
discrimination against them under the prohibited
ground of sex, or as an “other” (unspecified) ground
where the list of prohibited grounds in relevant
national anti-discrimination provisions is
non-exhaustive;
In order to protect intersex people from discrimination
and other violations of their human rights,
OII Europe and ILGA-Europe recommend the inclusion of
“sex characteristics” as a protective ground in all existing
and upcoming anti-discrimination legislation and
provisions as well as in hate crime and hate speech
legislation and provisions.
The ground “sex characteristics” should
l
be
explicitly included
in all equal treatment and
anti-discrimination provisions and legislation.
l
ensure
explicit protection
in the fields of
employment, access to goods and services including
housing, and bias-motivated violence.
l
ensure
explicit protection against discrimination
in
the areas of social protection, including social security
and healthcare, and social advantages and membership of
and involvement in organisations of workers and
employers.
Malta (2015) Gender Identity, Gender
Expression and Sex Characteristics Act
(2) The public service has the duty to ensure that
unlawful sexual orientation, gender identity, gender
expression and sex characteristics discrimination
and harassment are eliminated, whilst its services
must promote equality of opportunity to all,
irrespective of sexual orientation, gender identity,
gender expression and sex characteristics.
l
ensure that the
statutes of limitation
take into
account the length of time a victim of discrimination
needs to recover from discrimination; intersex people are
especially vulnerable as a result of continuing invisibility,
taboo and shame, and need recovery time before they are
able to file a claim; the statute of limitations should
reflect this need in order to allow the victim to access
justice.
European Parliament (2019):
Intersex Resolution
10. Deplores the lack of recognition of sex
characteristics as a ground of discrimination across
the EU, and therefore highlights the importance of
this criterion in order to ensure access to justice for
intersex people;
In addition, we recommend establishing comprehensive
awareness raising measures for the general public as well
as obligatory training about the extistence of intersex
people and human rights violations intersex people face
for professionals working in the area of health, education
and law enforcement.
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HEALTH
Intersex people’s health is often jeopardised from an early age.
Physical long-term effects of surgical and other medical
interventions include, but are not limited to, genital
insensitivity and impaired sexual function, sterility, massive
internal and external scarring, chronic pain, chronic bleeding
and chronic infections, osteopenia and osteoporosis at a very
young age, as well as metabolic imbalances. Psychological
long-term effects include post-surgical depression and trauma
(in some cases associated with the experience of rape).
69
The
complications and physical impairments related to these
high-risk interventions are well known among surgeons and
DSD
70
specialists and have been discussed in many medical
articles over the past decades.
71
However, this has not led to
the rejection of these interventions by medical experts.
72
Despite the increased visibility of both intersex people
and the human rights violations they face in recent years,
intersex people still encounter taboo and stigma in their
everyday lives. Many intersex people face severe trauma
from the unconsented interventions they were subjected
to: of the 439 participating intersex individuals of all ages
in a 2007 German study, almost 50% reported
psychological problems and a variety of problems related
to physical well-being and sex life. Not only the adult
respondents but also the children and adolescents
family life and in relation to their physical well-being.
73
When growing older, just like anyone else, intersex people
rely more on the health sector. However, because they had
to undergo traumatising treatments in the past, becoming
dependent on health services can be uniquely
challenging.
74
In addition, there is very little information
on how their health may be affected by the treatments
they took for most of their lives.
All these aspects lead to increased physical and mental
health issues that are too often left unaddressed by the
healthcare sector. A 2008 study found that well over half
of the intersex participants (62%) showed clinically
relevant psychological stress, 47% had suicidal thoughts,
and 13.5% reported past self-harm.
75
Ten years later, a
2018 study showed similar findings: 38% of the intersex
respondents had tried to access mental health services in
the preceding 12 months, and 13% of those attempts
were unsuccessful.
76
Prevalence rates of self-harming
behaviour and suicidal tendencies in intersex people that
were subjected to “normalising” surgeries have been
found to be “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”.
77
IMPAIRED ACCESS TO HEALTH
Intersex people sorely need access to expert-sensitive
health services. However, they often face severe obstacles
69 GATE (2015), p. 4.
70 This term does not align with human rights language. For more
information, see textbox on p. 8.
71 See: J. Woweries (2012), p. 6-10.
72 Ibid.
73 81% of the participants had been subjected to one or multiple
surgeries due to their DSD diagnosis (see textbox on p. XX). Two-thirds
made a connection between those problems and the medical and
surgical treatment they had been subjected to, see: Netzwerk
Intersexualität (2008) and, for a comprehensive summary J. Woweries
(2012), p. 16-17.
74 See: S. Monroe et. al. (2017), p. 18.
75 J. Woweries (2012), p. 15.
76 See: Equality Office (2018): UK National LGBT Survey. Summary report, p.
24. https://assets.publishing.service.gov.uk/government/uploads/system/
uploads/attachment_data/file/722314/GEO-LGBT-Survey-Report.pdf
77 K. Schützmann, L. Brinkmann, M. Schacht, 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, p. 16-33.
when trying to access health and care services, such as
ongoing discrimination and (re)traumatising experiences
with healthcare professionals.
As the 2017 PACE report points out, a severe lack of
knowledge about intersex people, the human rights
violations they face and the specific needs that follow from
these experiences exists among medical practitioners. This
lack is matched with personal bias that can result in disbelief
and insults, the refusal to perform needed examinations, and
examinations being carried out in violent ways or without
the intersex person’s consent. Intersex people regularly
speak in self-help groups and report to national intersex
NGOs or to OII Europe that they are at risk of sexual
harassment in medical settings.
78
The lack of training for
medical practitioners and other healthcare professionals
23
PROTECTING INTERSEX PEOPLE IN EUROPE:
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reported significant disturbances, especially with their
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severely hinders intersex people in accessing their right to
health. Training modules have been developed, e.g. in the
framework of the EU Health4LGBTI project,
79
but a lot
remains to be done on national level to increase knowledge
about and respect towards intersex people.
When seeking medical help for issues directly related to
their sex characteristics, diagnosis or sexuality, intersex
people often face highly insensitive and violent behaviour.
For example, a 2014 Dutch study on the experience of
intersex people in different areas of life emphasised that
six out of seven spoke “with a great deal of emotion about
poor information, insensitive communication and
discourteous treatment”.
80
Also for health issues which are not related to their variation
of sex characteristics, intersex people face challenges which
the non-intersex population does not face: a 2018 study from
the UK found that intersex respondents were more likely than
non-intersex respondents to say that their general
practitioner was not supportive.
81
Intersex respondents were
also more likely than non-intersex respondents to say they
were too worried, anxious or embarrassed to go to their
general practitioner.
82
ACCESS TO NEEDED
MEDICATION
Treatments and medications needed as a direct
consequence of so-called “normalising” interventions are
often not covered by health insurance. This can include,
for example, life-long hormone substitution therapy after
the removal of hormone-producing tissue in order to
prevent osteopenia and osteoporosis.
83
COUNSELLING
Lack of adequate psycho-social counselling for intersex
people is still commonplace in Europe: a 2015 German
survey found that of 630 participants (intersex adults,
parents of intersex children, counselling professionals and
intersex experts), only 4% considered the existing
counselling services to be sufficient. 90% of the
participants found the existing counselling services
insufficient for intersex adults and 95% pointed to the
lack of offers for intersex children and adolescents. 95%
found the counselling option for parents of intersex
children to be insufficient. Almost all participants
considered comprehensive counselling services important
in order to “avoid premature decisions”.
84
The support must be accessible as well: 76% of the study’s
participants wished for support offers in their immediate
vicinities and 59% wished for a minimum of several
contact points and advisory services per federal state.
85
The 2017 Amnesty report “First, do no harm” showed similar
findings for Denmark, as did a 2018 survey in the UK.
86
OII
Europe member organisations report the same situation for at
least 14 more countries in the Council of Europe region.
A lack of psycho-social counselling options for parents can be
extremely harmful or even fatal for the child as well: parents
of intersex children who are provided with medicalised
information are almost
three times more likely to consent to
surgery
than those who receive de-medicalised information.
87
78 PACE (2017): Report, Part C Article 49-50.
79 Health4LGBTI is an EU-funded pilot project aiming at reducing health
inequalities experienced by LGBTI people, see https://ec.europa.eu/
health/social_determinants/projects/ep_funded_projects_en#fragment2
80 The Netherlands Institute for Social Research (2014), p. 54; for more
testimonies about violence experienced in medical settings see: ibid. p.
54-55; as well as UN Shadow reports submitted from intersex NGOs: a
comprehensive and regularly updated list for the Council of Europe region
can be found on https://oiieurope.org/wp-content/uploads/2018/09/
List-of-intersex-specific-shadow-reports-to-UN-committees-OII-Europe.
pdf.
81 6% of intersex respondents compared with 2% of non-intersex
respondents, or intersex people are three times as likely to express that
their general practitioner is not supportive, see: Government Equality
Office (2018): UK National LGBT Survey. Summary report, p. 24. https://
assets.publishing.service.gov.uk/government/uploads/system/uploads/
attachment_data/file/722314/GEO-LGBT-Survey-Report.pdf
82 12% of intersex respondents and 7% of non-intersex respondents, or
intersex people are nearly twice as likely to indicate worry, anxiety or
embarrassment related to visiting their general practitioner, see:
Government Equality Office (2018), p. 24.
83 See: D.C. Ghattas (2013), p. 22. Incidents like these are reported to OII
Europe from member organisations on a regular basis.
84 See: Bundesministerium für Familie, Senioren, Frauen und Jugend
(2016.b), p. 13.
85 See: Bundesministerium für Familie, Senioren, Frauen und Jugend:
Dokumentation Fachaustausch (2016.b), p. 14.
86 See: Government Equality Office (2018), p. 24.
87 J. C. Streuli, E. Vayena, Y. Cavicchia-Balmer & J. Huber (2013), Shaping
parents: impact of contrasting professional counseling on parents’
decision making for children with disorders of sex development, Journal
of Sexual Medicine, Vol. 8 No. 3, pp. 1953–1960 http://www.ncbi.nlm.nih.
gov/pubmed/23742202.
24
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WHAT TO DO?
Right and access to health
National surveys as well as the UN shadow reports
88
clearly show that intersex people lack protection of their
right to health. In order to ensure intersex people’s
enjoyment of their right to health, States should take
measures to:
Parliamentary Assembly of the Council of
Europe (2017): Resolution 2191 (2017).
Promoting the human rights of and
eliminating discrimination against
intersex people
7.1.3. provide all intersex people with health care
offered by a specialised, multidisciplinary team
taking a holistic and patient-centred approach and
comprising not only medical professionals but also
other relevant professionals such as psychologists,
social workers and ethicists, and based on
guidelines developed together by intersex
organisations and the professionals concerned;
7.1.4.  ensure that intersex people have effective
access to health care throughout their lives;
7.1.5.  ensure that intersex people have full access
to their medical records;
7.1.6.  provide comprehensive and up-to-date training
on these matters to all medical, psychological and
other professionals concerned, including conveying a
clear message that intersex bodies are the result of
natural variations in sex development and do not as
such need to be modified;
l
protect people with variations of sex characteristics
from non-emergency, invasive and irreversible
“normalising” surgeries and other medical practices
without the intersex individual’s
personal and fully
informed consent
(see Chapter 1)
as well as establish:
l
the
right to obtain treatment,
including preventive
check-ups and needed medication, which are based on the
individual’s physical needs and are not limited by the sex/
gender marker in their official documents.
l
the
right to lifelong coverage
of any medication
needed as a result of surgical and/or other interventions
on the sex characteristics of a person by national health
insurance reimbursement systems.
l
the right to access to coverage that is
not limited by
the sex/gender marker
in the person’s official documents,
for any treatments.
l
the right to expert-sensitive and individually tailored
psychological and psycho-social
counselling and support
for all concerned individuals and their families,
from the
time of self-referral or diagnosis for as long as necessary.
European Parliament (2019): Intersex
Resolution
2. Stresses the need to provide adequate counselling
and support to intersex children and intersex
individuals with disabilities, as well as to their
parents or guardians, and fully inform them of the
consequences of sex-normalising treatments;
l
the right of survivors of intersex genital mutilation
(IGM) to access
reparative treatments
on the same
coverage terms as those provided for survivors of female
genital mutilation (FGM).
l
the right of access to one’s own
complete medical
records,
including for minors.
as well as taking measures to:
Malta (2015) Gender Identity, Gender
Expression and Sex Characteristics Act 15
(1) All persons seeking psychosocial counselling,
support and medical interventions relating to sex or
gender should be given expert sensitive and
individually tailored support by psychologists and
medical practitioners or peer counselling. Such
support should extend from the date of diagnosis or
self-referral for as long as necessary.
l
include human rights-based information about the
existence of intersex people and about intersex issues in all
medical curricula
and other curricula in the area of health.
l
establish
obligatory training for medical
professionals,
such as doctors, midwives, psychologists
and other professionals working in the health sector (e.g.
reception desk staff), in order to ensure that intersex
individuals and their families have access to adequate
healthcare and are protected from discrimination. The
88 As of January 2019, UN treaty bodies have issued 49 recommendations
on intersex, 26 of which reprimand Council of Europe Member States.
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training should include information about the
vulnerability and special needs of intersex people in
medical settings.
have access to adequate and respectful support and care
without discrimination.
l
invest in
funding intersex groups and organisations
so that they can engage in projects offering trainings for
medical professionals, midwives, psychologists and other
professionals working in the field of physical and mental
health.
l
establish obligatory, human rights-based training
about the existence of intersex people and about the
specific needs of intersex seniors for
professionals
working in elderly
care to ensure that intersex seniors
COUNSELLING
In its Resolution 2191 (2017)
Promoting the human rights
of and eliminating discrimination against intersex people,
the PACE called on Member States to ensure that
“adequate psycho-social support mechanisms are
available for intersex people and their families
throughout their lives”.
89
It has also called on Member
States to “support civil society organisations working to
break the silence around the situation of intersex people
and to create an environment in which intersex people
feel safe to speak openly about their experiences”.
90
Providing independent, non-medicalised psycho-social
counselling is a key factor for preventing invasive and
irreversible surgeries and other medical treatments on
intersex infants and children. It is also sorely needed to
ease the burden on parents and families of intersex
individuals. With good support systems, parents and
families of intersex children can support their children
and face possible challenges that lie in their way. To this
aim, measures should be taken to:
l
invest in
funding
intersex peer support groups,
preferably those who work from a de-pathologising and
human rights perspective.
l
increase the knowledge of
general counselling
services
(e.g. family counselling services) about the
existence and needs of intersex individuals and their
families.
l
raise
awareness with future parents
that intersex
people exist, e.g. by including this information in an
expert-sensitive manner in material directed to individuals
and couples expecting children.
l
invest in
funding intersex groups and organisations
so that they can engage in projects which offer trainings
for psychologists, social workers and other professinals
working in the field of psycho-social counselling.
l
establish professional intersex
peer counselling.
l
ensure access for intersex people and their families
to non-pathologising psycho-social
counselling and peer
support
within close proximity.
l
add human rights-based information about the
existence of intersex people and intersex issues to
curricula
for all students in the areas of counselling and
social work.
89 PACE (2017): Resolution 2191 (2017), Article 7.2.1.
90 PACE (2017): Resolution 2191 (2017), Article 7.2.2..
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EDUCATION
Intersex students reportedly face discrimination in all
areas of school life: they do not appear in educational
curricula at all
91
or only as an imaginative product of
mythology (e.g. hermaphrodites), as an example of
“abnormity”, or viewed in a pathological way (in
biology texts, medical handbooks or encyclopaedias).
Sex education does not take into account that bodies
other than the so-called “male” or “female” bodies
exist, and thus increases the feeling of shame,
secrecy, not existing at all or being a fraud at a
vulnerable age.
92
Intersex people from all over Europe have reported
facing discrimination and bullying at school and in
further education, including the use of derogatory
91 See: M. Bittner (2011): Geschlechterkonstruktionen und die Darstellung
von Lesben, Schwulen, Bisexuellen,Trans* und Inter* (LSBTI) in
Schulbüchern. Eine gleichstellungsorientierte Analyse von im Auftrag der
Max-Traeger-Stiftung.
92 See: Surya Monroe et. al. (2017), p. 49; see also: The Netherlands Institute for
Social Research (2014), p. 48-49, 53. Statistical data are lacking for European
countries to date. However, a 2015 UNESCO report on school bullying, violence
and discrimination in the Asia-Pacific region found that of the participating 272
Australian intersex individuals, aged 16-85+, only a quarter of participants rated
their overall experience at school positively. The overwhelming majority of
participants (92%) did not attend a school with inclusive puberty/sex education.
Overall, 18% of people with variations of sex characteristics had primary school
education only (compared to 2% of the general Australian population). Many
participants (66%) had experienced discrimination ranging from indirect to
direct verbal, physical or other discriminatory abuse. Well-being risks were
reportedly high, see: UNESCO TH/DOC/HP2/15/042, p. 38. http://unesdoc.
unesco.org/images/0023/002354/235414e.pdf
93 See also: The Netherlands Institute for Social Research (2014), p. 49. A
Russian study found that almost all (91%) participants experienced bullying
related to their intersex variation at some point in their lives. Most often the
bullying happened on the internet (73%), in school (64%) and in the company
of friends (46%), see: Intersex Russia (2016): Intersex in Russia, p. 42-43 https://
docs.wixstatic.com/ugd/8f2403_c9b4137f69d7482a9d8df2133d86f203.pdf
94 See: PACE (2017): Report. Part C, Article 17.
95 The World Bank, UNDP (2016): Investing in a Research Revolution for
LGBTI Inclusion, p. 12.
96 A 2018 survey showed that “feminine boys” may face problems in being
enrolled at school: “‘Feminine boys’, widely perceived as being gay, were at least
three times more likely to be refused enrolment in primary schools (15%)
compared to boys not perceived to be feminine (5%)” (World Bank Group,
IPSOS, ERA, The Williams Institute (2018): Discrimination against sexual
minorities in education and housing: evidence from two field experiments in
Serbia, p. 8) http://documents.worldbank.org/curated/
en/509141526660806689/pdf/124587-SERBIAN-WP-P156209-DISCRIMINATION-
AGAINST-SEXUAL-MINORITIES-IN-EDUCATION-AND-HOUSING-EVIDENCE-
FROM-TWO-FIELD-EXPERIMENTS-IN-SERBIA-PUBLIC-SERBIAN.pdf ; some
intersex people have a body that would be considered as ‘too feminine’ or ‘too
masculine’ for the sex they were assigned to. It is very likely that these intersex
children and adolescents face the risk reported in the 2016 survey.
97 This issue is also pertinent for trans youth; see: P. Dunne, C. Turraoin (2015):
It’s Time to Hear Our Voices. National Trans Youth Forum Report 2015, p. 8-9
http://www.teni.ie/attachments/f4fc5e54-f0c5-4f04-8a09-2703fdf264c2.PDF
98 Incidents reported to OII Europe by intersex people from Germany and
France.
99 See: The Netherlands Institute for Social Research (2014), p. 49.
100 See: J. Woweries (2012), p. 6-9; see also: Surya Monroe et al. (2017), p. 51.
101 Findings of unpublished interviews conducted in 2015 and 2017 by Dan
Christian Ghattas with Vincent Guillot and other French intersex persons.
language and psychological and physical violence, if
their gender expression, stature or other parts of their
appearance do not conform to the female or male
norms.
93
Research has shown that bullying often leads
students to drop out or experience significant mental
health problems. Long and/or repeated periods of
hospitalisation also can lead to early school drop-
out
94
and act as a source of bullying against intersex
students. These are harmful outcomes for both the
individual as well as the larger community and
society.
95
In addition, intersex students may face
problems enrolling at school in the first place,
because their physical appearance or gender
expression do not fit normative expectations.
96
Places where the body becomes visible to others, such
as toilets and changing rooms, are common areas of
anxiety and reported harassment,
97
regardless of
whether the intersex person has had a so-called
“normalising” surgery performed on them or not.
98
On an even more alarming level, intersex individuals
also face educational impairments directly linked to
the violation of their bodily integrity and to the
trauma related to insensitive communication and
mistreatment by medical practitioners, as well as to
the taboo and shame that is inflicted on them.
99
Most
surgeries, which are performed at an early age, lead to
several follow-up operations over the years.
100
Some
children drop out of school as a result of this long-
term recovery process. Unwanted hormonal treatment,
in childhood or puberty, with the aim of altering the
body towards the assigned sex has also been reported
to coincide with a decrease in school grades.
101
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This physical and psychological strain often prevents
intersex people from developing their full potential and
leads to under-achievement at school.
102
As a result, these
children and young adults may face significant difficulties
in obtaining a higher education degree and are at risk of
poverty when growing older. Intersex people who manage
to achieve higher education still struggle with the
combined impact of the human rights violations they
experienced and the discrimination they still face in
adulthood.
103
WHAT TO DO?
Every child’s right to quality education on the basis of
equal opportunity is firmly enshrined in the UN
Convention on the Rights of the Child.
104
A child’s
enjoyment of this right, however, depends on different
factors, one of them being the school’s capacity to protect
children from discrimination and harassment. Establishing
school policies that oblige schools to create an inclusive
and empowering environment is also key for protecting
the rights of intersex children and adolescents to
education.
The 2018 IGLYO
LGBTQI Inclusive Education Report
has
shown that the main areas for improvement in regards to
discrimination of LGBTQI students are compulsory
education curricula, mandatory teacher training and data
collection on bullying and harassment on grounds of
actual or perceived sexual orientation, gender identity
and expression or variation in sex characteristics. As of
2018, only two countries across Europe (Malta and
Sweden) provide most of these measures with respect to
sex characteristics specifically. Some regions in Spain
have also developed inclusive laws and policies, but these
have not been implemented nationally. By contrast,
eleven countries have failed to implement any
measures.
105
l
establishing
disaggregated data
collection on
bullying and harassment in school environments.
l
establishing
monitoring and evaluating tools
and
measurements for school inclusiveness.
l
including intersex people and the existence of more
than two biological sexes in a positive and empowering
way in
school curricula, text books and education
materials
in order to increase the understanding of the
general public on the quality of sex as a spectrum and the
existence of intersex people and to improve the self-
confidence of intersex children and adolescents.
l
establishing
school policies
that create a framework
that is appropriate for protecting intersex students, and
which,
s
explicitly
protect
intersex students/students with
variations of sex characteristics.
s
include
basic facts
about intersex students, e.g.
that they can have all possible gender identities, that
they may or may not transition, or that they may or
may not be subjected to surgery or other medical
interventions.
s
explicitly respect the right of all students to
discuss
and express their gender identity and expression
as
well as their sex characteristics openly or not and to
decide with whom, when and how much private
information they share.
Key measures to protect intersex students from structural
and verbal discrimination and harassment should
therefore include:
s
explicitly
include derogatory language
in the scope
of bullying; include derogatory language behaviour
that takes place in the school, on school property, at
school-sponsored functions and activities, as well as
l
explicitly including the
protective ground “sex
characteristics”
in anti-discrimination provisions in the
area of education.
l
establishing
mandatory training
to prepare teachers
for diversity in the classroom.
102 S. Monroe et al. (2017), p. 50.
103 See: The Netherlands Institute for Social Research (2014), p. 42.
104 UN Convention of the Right of the Child, Article 24.2.e https://www.
ohchr.org/en/professionalinterest/pages/crc.aspx
105 See: IGLYO (2018): LGBTQI Inclusive Education Report http://www.
iglyo.com/resources/lgbtqi-inclusive-education-report-2018
l
establishing
systems of support
for vulnerable
students that specifically include intersex students and
their needs.
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communication that occurs in the school, on school
property, at school sponsored functions and activities,
on school computers, networks, fora and mailing lists.
European Parliament (2019): Intersex
Resolution
14. Calls on the Commission to take a holistic and
rights-based approach to the rights of intersex
people and to better coordinate the work of its
Directorates-General for Justice and Consumers, for
Education, Youth, Sport and Culture, and for Health
and Food Safety, so as to ensure consistent policies
and programmes supporting intersex people,
including training of state officials and the medical
profession;
s
establish
mandatory training
about the existence
of intersex people and about discrimination and human
rights violations intersex students may face at school
and in their everyday life for teachers, social workers,
school psychologists and other professionals and staff
working at schools.
s
establish
low-threshold psychological and social
support mechanisms
for intersex students.
s
explicitly establish the entitlement of the intersex
student to be provided with, on request, specific
arrangements in relation to gender-specific facilities
such as toilets and changing rooms, by providing them
with a safe and non-stigmatising alternative.
Malta (2015) Trans, Gender Variant and
Intersex Students in Schools Policy
This Policy aims to:
1. Foster a school environment that is inclusive, safe
and free from harassment and discrimination for all
members of the school community, students and
adults, regardless of sex, sexual orientation, gender
identity, gender expression and/or sex
characteristics.
2. Promote the learning of human diversity that is
inclusive of trans, gender variant and intersex
students, thus promoting social awareness,
acceptance and respect.
3. Ensure a school climate that is physically,
emotionally and intellectually safe for all students
to further their successful learning development and
well-being, including that of trans, gender variant
and intersex persons.
s
encourage schools to
designate facilities
designed
for use by one person at a time as accessible to all
students regardless of their sex or gender, and to
incorporate such single-user facilities into new
construction or renovation.
s
allow for all students to participate in
physical
education classes and sports activities,
including
competition sports, in a manner consistent with their
gender identity.
s
encourage schools to evaluate all gender-based
facilities, activities, rules, policies, and practices in
order to ensure that they meet
equal treatment
requirements
and ensure non-discrimination for all
students regardless of their sex, gender, or sex
characteristics.
s
explicitly obligate school staff to
use the name and
pronoun
based on the student’s request, regardless of
whether these have been changed in official
documents.
s
confirm or establish the school’s obligation to
change a
student’s official records
to reflect a change
in legal name and/or gender upon receipt of
documentation that such change has been authorised,
including reissuing or exchanging any social document
or certificate relative to them according to their new
name and/or gender.
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EMPLOYMENT
Once they secure employment, intersex people have
reported intrusive curiosity about their bodies from their
co-workers, or, when they opened up, disbelief and
rejection. Just as in education, the strain of discrimination
and stigmatisation may lead to higher absence rates,
increasing the risk of intersex people losing their jobs.
110
INTERSEX PEOPLE FACE
DISCRIMINATION IN jOB
SEARCH AND EMPLOYMENT
When it comes to job search and employment, intersex
people are one of the most vulnerable groups within the
LGBTQI spectrum. Challenges faced by intersex people in
school often continue into their working life, perpetuating
taboo, secrecy and shame. They can be victims of direct or
indirect discrimination and harassment because of their
physical appearance or gender expression.
106
When applying for a job, intersex people might need to
explain gaps in their education or employment history,
resulting from times when they were hospitalised or when
they were not able to work due to depression or
trauma.
107
Employee medical checks can be extremely difficult for
intersex people, especially when the medical practitioner
in charge is not educated about the existence of intersex
individuals or considers intersex people to have a
“disorder of sex development”.
108
This is often
exacerbated by trauma associated with having to undergo
a medical examination.
109
Some intersex people have obtained a disability status
due to the physical impairments they have as a result of
unconsented surgeries and other medical interventions.
Depending on the country, this status can offer some
protection; however, it can also come at the cost of
additional discrimination and stigma as a persons with
disabilities.
111
106 Findings of unpublished qualitative interviews conducted with
intersex people living in Berlin (Dan Christian Ghattas, Ins A Kromminga
(2015)); see also: The Netherlands Institute for Social Research (2014), p. 49;
see also testimonials of intersex people in the only existing employer’s
guide to intersex inclusion in: M. Carpenter, D. Hough (2014): Employers’
Guide to Intersex Inclusion. Sydney: Pride in Diversity and Organisation
Intersex International Australia, p. 16-17 https://ihra.org.au/wp-content/
uploads/key/Employer-Guide-Intersex-Inclusion.pdf
107 See: M. Carpenter, D. Hough (2014), p. 20.
108 This term does not align with human rights language. For more
information, see textbox on p. 8.
109 See also chapter on Health, p. 23.
110 See: The Netherlands Institute for Social Research (2014), p. 56.
111 See: OII Europe (2014): Statement of OII Europe on Intersex, Disability
and the UN Convention on the Rights of People with Disabilities, p. 12
https://oiieurope.org/wp-content/uploads/2015/05/CRPD_2015_
Statement_OII_Europe.pdf; see also: Intersex Russia (2016), p. 41.
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WHAT TO DO?
Important steps towards guaranteeing intersex people’s
full access to employment and protection from
discrimination in work life are to:
l
add the ground of “sex characteristics”
to all anti-
discrimination legislation and other equal treatment
provisions in the area of job-search, training and
employment.
However, these legal measures are not enough; as long as
intersex people face human rights violations, invisibility,
lack of education, taboo and shame, as well as structural
and other discrimination in their everyday life, their
capacity to work and develop their skills to their highest
potential will still be significantly impaired. Therefore,
legal measures in the area of employment must be
accompanied by measures that increase the general
capacity of intersex people to participate in work life as
fully accepted members of society. Among these are:
Parliamentary Assembly of the Council of
Europe (2017): Resolution 2191 (2017).
Promoting the human rights of and
eliminating discrimination against
intersex people
7.6. carry out campaigns to raise awareness among
the professionals concerned and among the general
public as regards the situation and rights of intersex
people.
l
general
awareness-raising measures
with the general
public.
l
informing
trade unions and work councils
about the
existence of intersex people and establishing training
measures on discrimination intersex people may face at
the workplace.
l
informing
medical officers and company physicians
about the existence of intersex people and establishing
obligatory, human rights-based trainings on specific
needs intersex people may have, especially in regards to
medical examinations.
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HATE CRIMES AND
HATE SPEECH
WHAT TO DO?
In order to combat all forms of expressions that are likely
to produce, spread or promote hatred and discrimination
of intersex people, it is important to:
l
include “sex characteristics” as a
protected ground
in
existing hate speech and hate crime legislation and
INTERSEX PEOPLE ARE vICTIMS
OF HATE CRIMES AND HATE
SPEECH
Research has shown that intersex people are victims of
intersex-related derogatory language on a regular basis
throughout Europe.
112
In some languages, derogatory (or
pathologising) language is the only language that exists to
describe intersex people and their bodies, which requires
intersex activists to create positive and empowering
language from scratch.
113
Derogatory language perpetuates
the notion that intersex people do not have the same human
rights as everyone else, adding to their vulnerability.
With regards to hate crimes and physical assault, intersex
people with non-conforming physical appearances are
especially vulnerable.
114
Others face physical assault and/
or (sexual) violence in their family, their social environment
and medical settings as a direct result of their non-
conforming sex characteristics. The taboo and shame, still
often connected to having a variation of sex characteristic,
and lack of knowledge, puts intersex people at additional
risk when reporting such incidents to legal authorities.
As long as there exists no protection on the ground of sex
characteristics, incidents of hate speech and hate crime
may sometimes be dealt with on the grounds of sexual
orientation, gender identity, gender expression or an open
ground of “other”. However, a person who is attacked for
their physical sex characteristics might not be aware of
the possibility or may not want to seek justice through
these protective grounds, especially if they are not part of
the LGBTQ spectrum. In addition the use of the grounds
sexual orientation, gender identity, gender expression and
“other” are open to interpretation of legal and
administrative staff and does not provide an explicit legal
obligation to protect all intersex people.
provisions, and thereby guarantee the principle of equal
treatment between people irrespective of their sex
characteristics. This allows and ensures intersex individuals
are able to access justice on the basis of a ground that
matches their specific area of vulnerability in society
l
prohibit intersexphobic speech
in the media,
including on the Internet and social media.
l
include intersex people as a
vulnerable group
in
provisions and measures concerning the rights, support
and protections of victims of crime.
l
monitor
intersexphobic hate speech and hate crimes
l
create and evaluate
protective measures
to prevent
intersexphobic hate speech and hate crimes.
l
evaluate existing measures
in regards to intersex
inclusion.
European Parliament (2019): Intersex
Resolution
11. Calls on the Commission to enhance the
exchange of good practices on the matter; calls on
the Member States to adopt the necessary
legislation to ensure the adequate protection,
respect and promotion of the fundamental rights of
intersex people, including intersex children,
including full protection against discrimination;
112 See: D. C. Ghattas (2013), p. 58-59.
113 Unpublished interviews conducted by the author in 2017 with intersex
activist Pol Naidenov (Bulgaria) and Kristian Randjelovic (Serbia, Balkan
Countries)
114 Non-conforming gender expressions and/or appearances make
individuals especially vulnerable in public, see, e.g.: Commissioner for
Human Rights of the Council of Europe (2009): Human Rights and Gender
Identity, p. 14 https://rm.coe.int/16806da753. The same is true for
non-conforming intersex people, see D. C. Ghattas (2013), p. 15.
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GENDER MARKER
REGISTRATION AT
BIRTH
A BLANK GENDER MARKER IS
NOT THE SAME AS A GENDER
MARKER
Next to a third gender marker, the option of leaving the
gender or sex marker blank is also being discussed.
However, this option carries several problems of which
THE THIRD OPTION
Like everyone else, intersex people may identify as male,
female, non-binary or with any other gender. Providing a
third option for sex/gender registration in addition to the
sexes/genders “male” and “female” acknowledges
diversity and strengthens the visibility and recognition of
intersex people and people with non-binary gender
identities, provided that some very important rules are
followed:
policymakers should be mindful.
First of all, a blank gender marker is not the same as a
positive and respectful third gender marker and may not
be considered a positive recognition of someone’s
identity: “not having an entry is not the same for me as
having a suitable entry.” (Vania, Dritte Option)
115
Secondly, the blank option, like the third gender marker,
must be registered as a free choice and open to all. In
2013, Germany established a non-entry in the birth
registration, not as a free choice, but based on medical
determination of an intersex variation of sex
characteristics. The law established that if “the child can
be assigned to neither the female nor the male sex, then
the child is to be entered into the register of births
without such a specification”.
116
As a result, the law made
leaving the sex marker blank in the birth certificate a
legal requirement for all cases where, according to the
implementation directives, a medical statement would
confirm that the sex of the child was not determinable as
male or female. As with an obligatory third option for
intersex children, this law led to outing intersex children.
In addition, the 2013 provision could further encourage
the (potential) parents and doctors to avoid an
“ambiguous” child at any cost (through abortion, prenatal
“treatment” or so-called “disambiguating” or “normalising”
surgical and/or hormonal interventions). Research has
shown that very few children are assigned without a sex
marker and that some children with a blank gender
marker were assigned a sex after only a few months. The
study also showed that many legal issues are still not
l
the third option must be used only on a
voluntary,
personal basis.
l
the third option must be
available to all people.
l
parents must
not be obliged
to have their intersex
child registered with the third option, as this leads to
outing the child as intersex in a society where this may
put the child and their family at risk; in addition, many
intersex people do not identify as a third gender but as
male or female.
l
when deciding the name of the third option, all
relevant members of
civil society,
including intersex
human rights NGOs, should be consulted and involved in
the development of the most suitable term. The term used
to signify the third option must be a positive, respectful
and inclusive term in the respective language.
l
establishing a third option requires adapting all
legislation, implementation directives and administrative
processes
to ensure that people registered as a third
gender have
equal access and equal rights
to those
registered as “female” or “male”, e.g. in regards to family
rights, access to health, social security, etc.
115 Vanja and the strategic litigation group 3. Option filed the gender
marker case for a third gender marker option that was decided positively
by the German Federal Constitutional Court in 2018 http://dritte-option.
de/der-bgh-hat-entschieden-unsere-pressemittelung-dazu/ (translated
from German by the author).
116 § 22 Absatz 3 PStG (translated from German by the author).
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regulated for individuals with a blank gender marker, hence
leaving them in a legal limbo.
117
In the meantime, adult intersex people have successfully
applied for a removal of the female or male gender marker
in their birth certificates by providing medical records.
118
This shows that there are mature intersex people who
may choose this option. However, as long as medical
records and other requirements are a prerequisite, this
option is not available for intersex people who do not
have access to their medical records or have medical
records which are not considered as confirming that they
are not of one of the two binary sexes. In addition, people
who are not intersex have no access to a blank sex/gender
registry. This situation creates inequality on many levels
and should be considered discriminatory practice.
If a blank sex/gender marker is to be established, it should be
obligatory for all children regardless of their sex
characteristics up to the age of maturity. Beginning with the
age of maturity the option should be given, if a person wishes
so, to register a sex/gender out of multiple options or to leave
the sex/gender marker blank. There should be no limit to how
often a person can change their gender marker.
If this best practice is not currently an option, then the
blank sex/gender marker should follow all the
prerequisites as listed above for the third gender marker.
117 Between 2013 and 2015, only 12 blank entries were registered at birth,
two of them where changed into male/female some months later, despite
the fact that, according to estimates based on diagnostic prevalence,
between 280 and 300 children were born during this time who fit the
criteria from a medical perspective. The German Institute for Human Rights
concluded that the law had in fact not been applied, see:
Bundesministerium für Familie, Senioren, Frauen und Jugend (2017):
Gutachten. Geschlechtervielfalt im Recht. Status Quo und Entwicklung von
Regelungsmodellen zur Anerkennung und zum Schutz von
Geschlechtervielfalt. Begleitmaterial zur Interministeriellen Arbeitsgruppe
Inter- & Transsexualität – Band 8. Deutsches Institut für Menschenrechte Dr.
Nina Althoff, Greta Schabram, Dr. Petra Follmar-Otto. Berlin, p. 17-18, 31-32
https://www.bmfsfj.de/blob/114066/8a02a557eab695bf7179ff2e92d0ab28/
imag-band-8-geschlechtervielfalt-im-recht-data.pdf
118 Bundesministerium für Familie, Senioren, Frauen und Jugend (2017), p.
17.
119 The Yogyakarta Principles plus 10 clearly indicate that the registration
of sex or gender by States should eventually cease. See Principle 31, http://
yogyakartaprinciples.org/wp-content/uploads/2017/11/A5_
yogyakartaWEB-2.pdf
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WHAT TO DO?
As long as gender markers are registered at birth,
119
States should ensure that the existing diversity of sexes is
reflected in options available to register the child’s sex/
gender. States should:
Parliamentary Assembly of the Council of
Europe (2017): Resolution 2191 (2017).
Promoting the human rights of and
eliminating discrimination against
intersex people
7.3. with regard to civil status and legal gender
recognition:
7.3.1. ensure that laws and practices governing the
registration of births, in particular as regards the
recording of a newborn’s sex, duly respect the right
to private life by allowing sufficient flexibility to
deal with the situation of intersex children without
forcing parents or medical professionals to reveal a
child’s intersex status unnecessarily;
7.3.3. ensure, wherever gender classifications are in
use by public authorities, that a range of options are
available for all people, including those intersex
people who do not identify as either male or female;
l
statutorily and before the child is born,
provide
parents with information
about the legal options for
registering their child.
l
make
three
(male, female, non-binary or equivalent)
or more
gender markers available when registering a
child, and allow parents to choose their intersex child’s
legal gender (including leaving the gender marker blank,
if available) without any medical statement/diagnosis.
l
allow for
gender-neutral names,
with no obligation to
add another, gendered middle name.
l
allow for
gender neutral family names.
l
allow for
postponing gender registration
on the birth
certificate until the child is mature enough to participate
in the decisionmaking process.
European Parliament (2019): Intersex
Resolution
9. Stresses the importance of flexible birth
registration procedures; welcomes the laws adopted
in some Member States that allow legal gender
recognition on the basis of self- determination;
encourages other Member States to adopt similar
legislation, including flexible procedures to change
gender markers, as long as they continue to be
registered, as well as names on birth certificates and
identity documents (including the possibility of
gender-neutral names);
l
allow for
birth certificates without a gender marker
entry for all,
regardless of the infant’s sex characteritics;
in general, the absence of a marker should not indicate
the sex characteristics of an individual.
l
allow for parents and legal caretakers to
choose M, F,
or X for a child’s passport
when the child is registered as
non-binary (or equivalent), non-specified or without a
gender marker (entry left blank or registered as “not
specified”).
l
establish a
low-threshold procedure
should the
gender identity of the child not match the assigned
gender, which allows the child to change their legal
gender and name (see Legal Gender Recognition, p. 36.).
Malta (2015) Gender Identity, Gender
Expression and Sex Characteristics Act
4. (1) It shall be the right of every person who is a
Maltese citizen to request the Director [for Public
Registry] to change the recorded gender and, or first
name, if the person so wishes to change the first
name, in order to reflect that person’s self
determined gender identity.
(2) The request shall be made by means of a note
of registration published in accordance with article
5(3).
(3) The Director shall not require any other
evidence other than the declaratory public deed
published in accordance with article.
(4) The Director shall within fifteen days from the
filing of the note of enrolment by the Notary at the
public registry, enter a note in the act of birth of the
applicant.
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LEGAL GENDER
RECOGNITION
The European Court of Human Rights (ECtHR)
120
and
international human rights bodies
121
have repeatedly
made clear that procedures for legal gender recognition
must respect the principles of self-determination and
personal autonomy. This is also required by the right to
privacy and family life, as laid down in Article 8 of the
European Convention on Human Rights.
It is therefore crucial that intersex individuals have
the option – like everyone else – to adjust their
gender marker by a low-threshold procedure, based on
self-determination so that it matches their gender
identity.
INTERSEX CHILDREN AND
ADOLESCENTS MUST BE
ALLOWED TO CHANGE THEIR
GENDER MARKERS IN OFFICIAL
DOCUMENTS
Respect for a child’s identity is crucial in the development
of a positive self-image, and the child’s right to identity is
protected under Article 2 of the UN Convention on the
Rights of the Child (UN CRC). Intersex children and
adolescents are especially vulnerable to bullying and
harassment at school. They face an increased risk of
dropping out of school and lack of education, and poverty
at an adult age as a result.
125
For an intersex child or
adolescent whose gender identity does not match the
sex/gender that was assigned to them at birth, legal
gender recognition can be key to improving their standing
related to their peers and/or school staff. With regards to
the person’s future employment, legal gender recognition
before the legal age of maturity also allows school
certificates to be issued with the correct gender, hence
diminishing the risk of having to explain mismatches in
the future. Therefore, mature children and adolescents
should be able to change their gender markers by a
low-threshold procedure, based on self-determination.
Research has shown that a gender marker in official
documents that reflects and recognises the person’s
gender identity has a positive impact on an individual’s
mental and emotional health.
122
Legal gender recognition
also reportedly improves a person’s life in regards to
social inclusion and reduces the risk of structural and
other discrimination.
123
A substantial number of intersex people reject the sex
that they were registered with at birth. A 2012 clinical
review paper found that between 8.5% and 20% of
intersex people, regardless of whether their body was
subjected to medical interventions or not, developed a
gender identity that did not match the sex or gender that
was assigned to them at birth.
124
120 See: EGMR A.P., Garcon and Nicot v. France, 06. April 2017, § 93.
121 See, e.g., Commissioner for Human Rights of the Council of Europe
(2015); Fundamental Rights Agency of the European Union (2015); United
Nations Office of the High Commissioner for Human Rights (2014).
122 See: European Court of Human Rights (2002): Christine Goodwin vs.
United Kingdom, n° 28957/95.
123 Global Commission on HIV and the Law. HIV and the law: risks, rights
and health; New York, NY: UNDP; 2012.
124 P.S. Furtadoet al. (2012): Gender dysphoria associated with disorders of
sex development, in: Nat. Rev. Urol. 9 (11): 620–627.
125 IGLYO (2018): LGBTQI Inclusive Education Report, p. 19 http://www.iglyo.com/
wp-content/uploads/2018/01/LGBTQI-Inclusive-Education-Report-Preview.pdf
126 See also: Transgender Europe (2018): TGEU Position Paper on Gender
Markers https://tgeu.org/wp-content/uploads/2018/07/Gender-Marker-
Position-Approved-13-June-2018-formatted.pdf
127 Sunil Babu Pant et al. v. Prime Minister and Council of Ministers et al./
Case : Mandamus/070-WO-0287.
SOCIETAL REALITY MAKES
MULTIPLE SEX/GENDER MARKER
CHANGES INEvITABLE
A person’s gender identity is a matter of self-
determination and personal autonomy and can evolve
over time.
126
In addition, when an individual first changes
their gender marker, they may not yet know which gender
marker would represent them best or the best possible
marker might not be available. Furthermore, new options
become available (such as a third gender marker), they
must have the right to adjust their marker. For all of these
reasons, allowing for changing a gender marker more than
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therefore protects the rights to privacy and family life, as
enshrined in Article 8 of the European Convention on
Human Rights.
Intersex people who have been forcibly assigned a gender
through surgical or other means often face trauma and
may face severe obstacles in developing their own gender
identity. Being able to change their gender marker several
times while healing from the trauma and while developing
their identity is important in order to prevent re-
traumatisation as a result of the pressure that a ‘one time
only’-chance would put on them. Limiting the number of
times for changing the gender marker, therefore, is
particularly problematic for intersex people.
intersex as a baseline for a simple administrative
procedure violates the person’s right to privacy and family
life as protected under Article 8 of the Universal
Declaration of Human Rights (UDHR).
In addition, many intersex people are not able to obtain
their medical records
129
and will therefore not be able to
access legal gender recognition. They would be forced to
re-enter the medical setting, in order to receive an
examination and a diagnosis, without discernible medical
benefit for the individual and with a high probability of
(re)traumatisation and stigmatisation.
Furthermore, recent medical opinions and guidelines have
pointed out that a DSD
130
diagnosis does not allow any
presumption on a person’s gender identity.
131
Requiring
REQUIRING MEDICAL RECORDS
FOR LEGAL GENDER
RECOGNITION IS A HUMAN
RIGHTS vIOLATION
In 2017 a group of UN and international human rights
bodies
128
called on States to “facilitate quick, transparent
and accessible legal gender recognition and without
abusive conditions, guaranteeing human rights for all
persons, respectful of free/informed choice and bodily
autonomy.” The group explicitly pointed out that “coercive
medical interventions/procedures should, therefore, never
be employed”.
medical records as a pre-requisite for legal gender
recognition would therefore reintroduce outdated medical
opinions and thus further consolidate the medicalisation
and stigmatisation of intersex individuals.
REQUIRING DIvORCE FOR
LEGAL GENDER RECOGNITION
IS A HUMAN RIGHTS vIOLATION
The UDHR lays out the fundamental human right to found
a family.
132
Requirements that an individual be single or
that a marriage be dissolved to undergo legal gender
recognition violate this right. For intersex people,
accessing the right to found a family can be made
especially difficult due to arbitrary sex assignments at
birth, administrative and legal hurdles to acquiring
accurate identity documents, and social isolation and
128 The group consisted of: the UN Committee on the Rights of the Child
(CRC), UN Committee against Torture (CAT), UN independent experts, the
UN Special Rapporteur on extreme poverty and human rights, the UN
Special Rapporteur on the right to education, the UN Independent Expert
on protection against violence and discrimination based on sexual
orientation and gender identity, the UN Special Rapporteur on the right of
everyone to the enjoyment of the highest attainable standard of physical
and mental health, the UN Special Rapporteur on violence against
women, its causes and consequences, the Inter-American Commission on
Human Rights (IACHR), African Commission on Human and Peoples’ Rights
(ACHPR), and the Council of Europe Commissioner for Human Rights.
129 PACE (2017): Report, Part C Article 52.
130 This term does not align with human rights language. For more
information, see textbox on p. 8.
131 See: S2k-Leitlinie Varianten der Geschlechtsentwicklung 2016, p. 5.
132 See: The Universal Declaration of Human Rights, Article 16. https://
www.un.org/en/universal-declaration-human-rights/
trauma. Further limitations in the form of forced divorce
are especially punitive.
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PROTECTING INTERSEX PEOPLE IN EUROPE:
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once acknowledges and reflects these realities,
127
and
Requiring medical records confirming that a person is
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INTERSEX REFUGEES AND
ASYLUM SEEKERS NEED TO BE
PROTECTED
Intersex refugees and asylum seekers are especially
vulnerable. Being able to change the gender marker in
their documents can protect intersex and trans refugees
and asylum seekers from the risk of structural and other
discrimination and can ease the pressure that they are
subjected to. Therefore, low treshhold procedures for
legal gender recognition based on self-determination
should be established for refugees and asylum seekers
who wish to have their gender identity reflected in their
official documents.
ACCESS TO jUSTICE
AND REDRESS
Many intersex people, who have been subjected to
surgeries and other medical treatments without their
consent as infants, children or adolescents, were raised in
an atmosphere of silence and taboo. Too often, they only
find out as adults that they underwent treatment not
because of health reasons but for societal reasons. Once
they do find out, time to process and heal is needed
before the person can start to think of seeking justice.
Intersex people seeking justice for the harm done by
medical practices to their bodily integrity report challenges,
such as difficulties in accessing their (full) medical records,
Malta (2015) Gender Identity, Gender
Expression and Sex Characteristics Act
(8) A person who was granted international
protection in terms of the Refugees Act, and in
terms of any other subsidiary legislation issued
under the Refugees Act, and who wants to change
the recorded gender and first name, if the person so
wishes to change the first name, shall make a
declaration confirmed on oath before the
Commissioner for Refugees declaring the person’s
self-determined gender and first name. The
Commissioner for Refugees shall record such
amendment in their asylum application form and
protection certificate within fifteen days.
sometimes because the retention period has expired, and
sometimes because hospitals and doctors do not give them
access, even in those countries where the right of patients
to access their medical records is legally protected.
133
And
even when intersex people do obtain their medical
documents, the claim might be time-barred: too often, it is
legally too late for intersex people to seek justice.
If a case is brought to court, laywers and judges in most
cases lack fundamental knowledge about the existence of
intersex people. Intersex people seeking justice need to
instead first educate them in a situation of increased
vulnerability.
134
In addition, a doctor or hospital can claim
that the medical interventions were in compliance with
medical standards at the time. A court may be likely to base
its ruling on this argumentation, especially as long as
133 See footnote 101, interview with Vincent Guillot.
134 See footnote 113, interview with Pol Naidenov.
135 See Appendix for details of this case law; in France another two cases
were filed. The first case, by an intersex person who had been subjected to
unconsented castration and “feminising” genital surgery as a child, on the
basis of the article 222-10 of the Penal Code on the ground of aggravated
violence resulting in mutilation or permanent disability. The case was
rejected by the Court de Cassation (the highest court in France) on the 8th
or March 2018 because the statutes of limitation had expired, see: B.
Moron-Puech, « Rejet de l’action d’une personne intersexuée pour
violences mutilantes. Une nouvelle « mutilation juridique » par la Cour de
cassation ? », La Revue des Juristes de Sciences Po, juin 2018, p. 71-104
https://sexandlaw.hypotheses.org/412/bmp-commentaire-6-mars-2018.
The second case is currently being processed. It was filed in 2016 on the
grounds of mutilation and intentional violence against a minor under 15
years of age with seven so-called “masculinising” genital surgeries,
beginning at the age of three, which left the claimant with severe pain; see
https://www.20minutes.fr/societe/2172971-20171126-personne-intersexe-
depose-plainte-contre-medecins-operee-devenir-homme (12.3.2019).
intersex people’s bodily integrity is not protected by law. To
this date, only two intersex people in Europe successfully
went to court to get justice for the harmful medical practice
they were subjected to. In one case, the petitioner won their
suit against the surgeon in charge of the operation; in the
other case, the petitioner won their case against the hospital
where the surgery was performed in the first instance, but
then settled in the second instance.
135
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What to do?
In order to allow intersex people to access justice, States
should:
European Parliament (2019): Intersex
Resolution
6. Calls on the Member States to improve access for
intersex people to their medical records, and to
ensure that no one is subjected to non-necessary
medical or surgical treatment during infancy or
childhood, guaranteeing bodily integrity, autonomy
and self-determination for the children concerned;
l
extend the
retention period
for medical records of to
at least 40 years in order to allow intersex people access
to their medical records at a mature age.
l
extend the
statutes of limitations
to at least 20 years,
and suspend them until the minimum age of 21 of the
person concerned.
l
establish adequate
legal sanctions
for medical and
other professionals who conduct any sex-“normalising”,
sex-“assigning” or sex-altering surgical or other
interventions which can be deferred until the person to be
treated is mature enough to provide informed consent.
Malta (2015) Gender Identity, Gender
Expression and Sex Characteristics Ac
(2) Medical practitioners or other professionals in
breach of this article shall, on conviction, be liable
to the punishment of imprisonment not exceeding
five years, or to a fine (multa) of not less than five
thousand euro (€5,000) and not more than twenty
thousand euro (€20,000).
l
explicitly establish the
legal obligation
for medical
professionals with regards to all surgical and other
interventions that aim to alter the genitals, gonads,
reproductive organs or any hormonal set-up:
s
to
inform
the mature individual comprehensively about
the treatment, including other possible medical options and
details about risks and possible long-term consequences
and effects based on up-to-date medical
information;
s
in case of urgent, non-deferrable treatment on a
child, which is not driven by social factors or a desire
for legal certainty,
inform the child’s parent(s) or
legal guardian(s)
comprehensively about the
treatment, including other possible medical options
and details about risks and possible long-term
consequences and effects based on up-to-date
medical information;
s
provide
detailed minutes
of the consultation
including all of the above information, which are handed
out to the patient or their parent(s) or legal guardian(s);
s
include these minutes in the intersex person’s
medical records.
l
encourage the inclusion of legal cases about the human
rights of intersex people in
medical legal curricula and exams
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REPARATION AND REDRESS ARE
A MATTER OF TAKING
RESPONSIBILITY
The harm that has been and is still being inflicted on
intersex people is, in effect, a societal problem and as
such, it is society’s responsibility. As with the sterilisation
of people with disabilities, the medical setting provides
the space where societal norms and notions come into
effect with devastating consequences for the individual.
As long as their healthy bodies and sex characteristics are
not recognised in their own right but instead as disordered
male or female bodies, intersex people are and will
continue to be victims of structural discrimination and
violence. Access to redress remains limited as long as
society and States wrongly consider the human rights
violations of intersex people to be rightful or helpful
treatments. As long as society and States do not
acknowledge the existence of intersex people, their
human rights will be disregarded and they face significant
obstacles in seeking reparation and redress.
WHAT TO DO?
The
2013 Malta Declaration,
which contains the joint
demands of the international intersex community, calls
on States to:
l
recognise that medicalisation and stigmatisation of
intersex people result in
significant trauma and mental
health concerns.
l
provide adequate acknowledgement of the
suffering
and injustice
caused to intersex people in the past.
l
provide adequate
redress, reparation, access to
justice and the right to truth.
The
2017 Yogyakarta Principles Plus
10 elaborate in detail on
how to establish these rights for victims of violations on the
basis of sexual orientation, gender identity, gender expression
and sex characteristics.
136
The 2014 interagency statement
Eliminating forced, coercive and otherwise involuntary
sterilization
by OHCHR, UN Women, UNAIDS, UNDP, UNFPA,
UNICEF and WHO includes a list of recommendations to
States on how to best provide remedies and redress.
137
Parliamentary Assembly of the Council of
Europe (2017): Resolution 2191 (2017).
Promoting the human rights of and
eliminating discrimination against
intersex people
2. The Parliamentary Assembly considers that this
approach involves serious breaches of physical
integrity, in many cases concerning very young
children or infants who are unable to give consent
and whose gender identity is unknown. This is done
despite the fact that there is no evidence to support
the long-term success of such treatments, no
immediate danger to health and no genuine
therapeutic purpose for the treatment, which is
intended to avoid or minimise (perceived) social
problems rather than medical ones. It is often
followed by lifelong hormonal treatments and
medical complications, compounded by shame and
secrecy.
136 The Yogyakarta Principles plus 10 (2017): Principle 37: The Right to
Truth - A, p. 14-15, see Appendix.
137 OHCHR, UN Women, UNAIDS, UNDP, UNFPA, UNICEF and WHO (2014):
Eliminating forced, coercive and otherwise involuntary sterilization. An
interagency statement, p. 15-16, see Appendix.
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There has been a promising increase in sociological,
non-medicalised studies regarding the situation of
intersex people over the past few years, most of them
conducted in collaboration with intersex organisations
and intersex people, acknowledging and remunerating
their expertise. However, there is still a substantial lack
of data and surveys regarding the living situation of
intersex individuals.
138
The most pressing research gaps include:
involve intersex people, significant methodological flaws
were the result, including biased sampling, failure to
adequately account for or address researcher-participant
power dynamics, poor instrument design, and
misinterpretation of results. All of these issues can be
addressed when intersex people are involved throughout
the process.
l
Experiences of normalising practices.
l
Ill-treatment and violence in medical settings.
l
Statistical data on the number of intersex-related
surgeries and other medical interventions in infancy and
childhood.
l
Statistical data on the long-term health effects
(including impairments) of surgeries and other medical
treatment in infancy and childhood.
l
Trauma and mental health.
l
Experiences with supportive environments and/or
services in all areas of life (family, health-care, education,
work etc.).
l
School dropout and bullying.
l
Facing stigma and harassment in every day life, at
school and in employment.
But the challenge not only lies in gathering the data.
Correct contextualisation is key for the validity of the
findings, which cannot happen when intersex people are
not meaningfully involved in all stages of research
projects. In past studies which failed to adequately
138 See: PACE (2017): Resolution 2191 (2017), Article 7.5., 7.5.1 and 7.5.2; see
also: PACE (2013): Resolution 1952 (2013), Article 7.5.3.
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DATA COLLECTION:
Addressing research gaps
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Parliamentary Assembly of the Council of
Europe (2017): Resolution 2191 (2017).
Promoting the human rights of and
eliminating discrimination against
intersex people
7.5. collect more data and carry out further research
into the situation and rights of intersex people,
including into the long-term impact of sex-
“normalising” surgery, sterilisation and other
treatments practised on intersex people without
their free and informed consent, and in this context:
7.5.1. conduct an inquiry into the harm caused by
past invasive and/or irreversible sex- “normalising”
treatments practised on individuals without their
consent and consider granting compensation,
possibly through a specific fund, to individuals
having suffered as a result of such treatment carried
out on them;
7.5.2. in order to build a complete picture of current
practice, keep a record of all interventions carried
out on children’s sex characteristics;
WHAT TO DO?
There are some parameters, which, when taken into
account, have proven to increase the usefulness of
research findings on intersex people and foster the
development of targeted research approaches:
l
Research on the situation of intersex people must
ask
about experiences,
not about identity.
l
Intersex people should not be researched only as a
subgroup of LGBTI but as an
independent part of the
population;
data
disaggregation
is key.
l
Working together with
intersex-led organisations and
intersex-led peer support groups
is vital for increasing the
reach of studies on intersex people.
l
Consulting
with intersex activists and organisations
is important.
l
when creating questionnaires to avoid pitfalls that
lead to inaccurate data.
l
when analysing and contextualising the data to
increase the accuracy of the analysis.
European Parliament (2019): Intersex
Resolution
12. Calls on all relevant stakeholders to carry out
research concerning intersex people, taking a
sociological and human rights perspective rather
than a medical one;
42
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FUNDING - CREATING
SUSTAINABILITY
fraction of this already small amount went to intersex-led
organisations.
142
Another 2017 funding report on the state of intersex
organising found that many intersex-led human rights
organisations had applied for funding unsuccessfully.
About half (52.8%) of those organisations reported that
donors told them that intersex people were not a key
population for their work. Due to lack of opportunity and
human resources, very few organisations and groups
applied for or received any form of government
funding.
143
The survey also found that intersex organisations play a
key role in advancing the life situation of intersex people
and that they work successfully in many different areas at
the same time: more than eight in ten (85.4%) of the
organisations or groups engaged in advocacy, community
organising or health provider educational activities.
Almost three-quarters (73.2%) provided peer support,
social services or engaged in individual-level advocacy.
When asked what work they would like to do but are
precluded from doing for lack of resources, intersex
groups most wanted to expand their work at local and
national levels in the area of community organising
(34.1%), campaigning (26.8%) and base-building activities
(26.8%); however, they were hindered from pursuing these
activities due to a lack of resources.
144
Despite the fact that intersex actvism made its first
steps in the mid 90s
139
, it is only since 2015 that
intersex-led human rights NGOs have started to receive
some funding. However, intersex organisations in
Europe (and world-wide) are still heavily underfunded
and under-resourced.
time) staff.
According to the 2018 Global Resources Report for
2015/16, the total funding for work related to intersex
people and intersex people’s rights in Western Europe and
Eastern Europe, Russia and Central Asia was $0 USD (zero
dollars) in 2013-2014 out of $50,640,313 USD for the
LGBTI movements overall in these two regions. This
increased to $161,711 USD for Eastern Europe, Russia and
Central Asia and to $607,042 USD for Western Europe for
the time-period of 2015-2016 (out of $19,336,445 USD
and $37,510,193 USD for the LGBTI movements overall for
140
To date, only a handful of
NGOs in Europe receive enough funding to hire (part-
139 ISNA (Intersex Society of North America, U.S.A., founded in 1993) and
the AGGPG (Arbeitsgemeinschaft gegen Gewalt in der Pädiatrie und
Gynäkologie, Germany, founded in 1995).
140 See: Astraea – Lesbian Foundation for Justice, American Jewish World
Service, Global Action for Trans Equality (2017): The State of Intersex
Organizing (2nd edition). Understanding the Needs and Priorities of a
Growing but Under-Resourced Movement https://www.
astraeafoundation.org/publication/
state-intersex-organizing-2nd-edition/
141 Funders for LGBTQ Issues, Global Philantropy Project (2018): 2015/2016
Global Resources Report, Government and Philanthropic Support for
Lesbian, Gay, Bisexual, Transgender, and Intersex Communities, p. 44 and
79 https://lgbtfunders.org/
research-item/2015-2016-global-resources-report/
142 See: Astraea, GATE (2017), p. 6.
143 See: Astraea, GATE (2017), p. 7. When analysing the kind of grants the
survey found that intersex groups are most likely to receive intersex or
LGBT-specific funding from foundations and larger NGOs as sub-grants
and that they did receive almost no government funding. Of the nearly
two-thirds (64.3%) of intersex groups that received any external funding, a
total of twenty-seven groups, the most common sources were foundation
funding (55.6%) and sub-grants from larger NGOs (29.6%), see: ibid. p. 7
https://www.astraeafoundation.org/publication/
state-intersex-organizing-2nd-edition/
144 Astraea, GATE (2017), p. 6.
Volunteer work is the fragile pillar of all intersex
oganisations’ activities so far. Volunteer activism leads
key activists to burn out, requires them to accept financial
insecurity and does not provide for enough human
resources. This is not a sustainable situation, neither for
intersex activism, nor for States who want to benefit from
the knowledge and expertise, as well as the expert
services (trainings, peer support, counselling, awareness
raising), which only intersex organisations and groups can
provide.
43
PROTECTING INTERSEX PEOPLE IN EUROPE:
A TOOLKIT FOR LAW AND POLICYMAKERS
these two regions, respectively).
141
However, only a
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WHAT TO DO?
Parliamentary Assembly of the Council of
Europe (2017): Resolution 2191 (2017).
Promoting the human rights of and
eliminating discrimination against
intersex people
7.2.2. support civil society organisations working to
break the silence around the situation of intersex
people and to create an environment in which
intersex people feel safe to speak openly about their
experiences;
OII Europe and ILGA-Europe, in conjunction with the key
recommendations from the funding reports mentioned
above, call on States to:
l
fund work
led by intersex people.
l
provide
flexible and stable funding
to intersex
organisations and groups.
l
provide sufficient funding for
paid staff,
and invest in
anti-trauma work and burnout prevention.
l
invest in the
organisational strengthening
of intersex
organisations and groups.
l
support intersex activists to
build community and
national-level work,
while they continue to advance work
European Parliament (2019): Intersex
Resolution
5. Calls on the Commission and the Member States
to increase funding for intersex civil society
organisations;
at the international level.
l
educate funding institutions and peers
about intersex
people and the human rights violations they experience
and challenges they face in society.
l
decrease the barriers
for intersex groups in finding
and applying for funding, particularly by explicitly
addressing calls for proposals to intersex organisations
and groups and funding unregistered groups through
intermediaries.
44
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