Eliminating the “Abnormal”

Pikramenou, Nikoletta

doi:10.1007/978-3-030-27554-9_2

Nikoletta Pikramenou²

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Abstract

“Normality” or “normalcy” is a broad concept and its definition varies among disciplines, scientific communities, individuals, eras, societies and circumstances. “Normality” is treated as a statistical perception according to which philosophers and society consider it as the state of being “normal” which is linked to the “most usual”. Several psychoanalysts use “normal” to indicate the perfect and ideal and physicians frequently use “normal” with a technical significance which implies what ought to be. Attributing characteristics to an individual such as “normal” or “deviant” and “unusual” lead to “labeling”. “Labeling” is based on the thesis that human identity is created through the process of interaction between an individual and the others in society. Then, society based on “labeling”, responds by forming prejudices and stigmatising the targeted individuals. Individuals who are victims of stigmatisation often create a negative image for themselves and face marginalisation, discrimination and human rights violations.

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Notes

1.
Wellman (1958), p. 43.
2.
Idem.
3.
Skopalová (2010), p. 329.
4.
Idem.
5.
WHO (2015), p. 26.
6.
Foucault (1996), p. 197.
7.
Hester (2004a, b), p. 37.
8.
See Garland (2016), Ní Mhuirthile (2015) and Scherpe et al. (2018).
9.
See Sect. 1.1.
10.
See Council of Europe, Human Rights and Intersex people (2015).
11.
See United Nations Free & Equal, “Factsheet Intersex” (2016).
12.
See Sparrow (2013).
13.
Dreger (1999), p. 6.
14.
Lear (2007), p. 13.
15.
See Damiano (2011) and Sparrow (2013).
16.
Human Genetics Alert (2002), p. 1.
17.
OII Europe, Malta Declaration (2013), “Demands”.
18.
Public Statement by the Asian Intersex Movement, paras. 6-7.
19.
Council of Europe (2015), p. 21.
20.
WHO, “Gender and Genetics: Sex selection and discrimination”.
21.
Idem.
22.
Idem. WHO also notes that “in some countries, such as India and China, it is commonly known that the practice of sex-selective abortion has resulted in distortions of the natural sex ratio, in favour of males. In addition, there is concern that sex selection involves inappropriate control over nonessential characteristics of children and may place a potential psychological burden on, and hence cause harm to, sex-selected offspring.” On China and India see also Pinde and Malhotra (2006) and Zhou et al. (2011).
23.
Akchurin and Kartzke (2007), p. 21.
24.
Behrmann and Ravitsky (2013), p. 39.
25.
Idem, p. 22.
26.
Idem.
27.
Idem.
28.
Tamar-Mattis (2012), p. 2.
29.
Idem.
30.
Idem.
31.
Turner syndrome is a chromosomal condition that affects development in females. The most common feature of Turner syndrome is short stature, which becomes evident by about age 5. An early loss of ovarian function (ovarian hypofunction or premature ovarian failure) is also very common. The ovaries develop normally at first, but egg cells (oocytes) usually die prematurely and most ovarian tissue degenerates before birth. Many affected girls do not undergo puberty unless they receive hormone therapy, and most are unable to conceive (infertile). A small percentage of females with Turner syndrome retain normal ovarian function through young adulthood (U.S National Library of Medicine, “Turner Syndrome”).
32.
Androgen insensitivity syndrome is a condition that affects sexual development before birth and during puberty. People with this condition are genetically male, with one X chromosome and one Y chromosome in each cell. Because their bodies are unable to respond to certain male sex hormones (called androgens), they may have mostly female external sex characteristics or signs of both male and female sexual development (U.S National Library of Medicine, “Androgen Insensitivity Syndrome”).
33.
Congenital adrenal hyperplasia (CAH) due to 11-beta-hydroxylase deficiency is one of a group of disorders (collectively called congenital adrenal hyperplasia) that affect the adrenal glands. The adrenal glands are located on top of the kidneys and produce a variety of hormones that regulate many essential functions in the body. In people with CAH due to 11-beta-hydroxylase deficiency, the adrenal glands produce excess androgens, which are male sex hormones. There are two types of CAH due to 11-beta-hydroxylase deficiency, the classic form and the non-classic form. The classic form is the more severe of the two types (U.S National Library of Medicine, “Congenital adrenal hyperplasia due to 11-beta-hydroxylase deficiency”).
34.
Sparrow (2013), p. 31.
35.
Idem.
36.
Human Fertilisation & Embryology Authority, “PGD conditions”.
37.
Intersex Human Rights Australia, “Submission on the ethics of genetic selection against intersex traits”, 2014.
38.
Sparrow (2013), p. 36.
39.
Davis (2013), p. 51.
40.
Idem. See also Nisker (2013).
41.
Universal Declaration of Human Rights, adopted by the General Assembly of the United Nations on 10 December 1948.
42.
Center for Reproductive Rights (2012), p. 5.
43.
Convention on the Rights of the Child, Adopted and opened for signature, ratification and accession by General Assembly resolution 44/25 of 20 November 1989 entry into force 2 September 1990, in accordance with article 49.
44.
Center for Reproductive Rights (2012), p. 6.
45.
Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo, 4.IV.1997.
46.
See Explanatory Report to the Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo, 4.IV.1997, Article 11-Non-discrimination.
47.
Resolution 1829, 2011, para. 4.
48.
Recommendation of the Committee of Ministers to member states, 2002, para. 79.
49.
Costa and Pavan v. Italy, application no. 54270/10, final judgment 11 February 2013.
50.
European Court of Human Rights (2016), p. 25.
51.
Idem, p. 26.
52.
Costa and Pavan v. Italy, application no. 54270/10, para. 57.
53.
Idem, para. 58.
54.
See Grégor Puppinck, “Prohibition of Pre-implantation Genetic Diagnosis: The ECHR Censors the Italian Law”, 2012.
55.
European Convention on Human Rights as amended by Protocols Nos, 11 and 14, supplemented by Protocols Nos, 1,4,6,7,12 and 13.
56.
Vo v. France, judgment of 8 July 2004, para. 13.
57.
Korff (2006), p. 9.
58.
Idem, para. 84.
59.
Council of Europe (2015), p. 30.
60.
The language used in this paragraph reflects similar statements on the role of sex selection in discriminating against women. The State obligation doesn’t call for prohibition of such technologies, because it is limited to existing norms in international human rights law. Recognising that human genetic modification is becoming technologically feasible, this is anticipated (See IHRA, “The Yogyakarta Principles plus 10 launched”).
61.
The Yogyakarta principles plus 10, 2017, Principle 38 para L.
62.
Idem.
63.
WHO, “Gender and Reproductive rights”.
64.
Robertson (2003), p. 447.
65.
Idem.
66.
See Bayefsky (2016) and Shelby Deeney (2013).
67.
See Sect. 2.3.
68.
Behrmann and Ravitsky (2013), p. 41.
69.
Foucault (1980), p. vii.
70.
Elders et al. (2017), p. 2.
71.
ISNA, “What’s wrong with the way intersex has traditionally been treated?”.
72.
On the medical management of intersex infants see also Garland (2016) and Scherpe et al. (2018).
73.
Human Rights Watch and Interact (2017), p. 21.
74.
ISNA, “What’s wrong with the way intersex has traditionally been treated?”.
75.
Thorn (2014), p. 610.
76.
See also Garland (2016), Scherpe et al. (2018), Karkazis (2008), Creighton (2001), Creighton and Minto (2001), Greenberg (2012), Morland (2006), Preves (2008) and Reis and Kessler (2010).
77.
Human Rights Watch and Interact (2017), p. 6.
78.
ISNA, “Who was David Reimer (also, sadly, known as “John/Joan”)?”.
79.
Idem.
80.
Australian Human Rights Commission (2009), p. 7.
81.
Kessler (1990).
82.
Fausto-Sterling (2000a, b), p. 46.
83.
Idem.
84.
Lee et al. (2006).
85.
Garland (2016), p. 102.
86.
Lee et al. (2006).
87.
Creighton et al. (2014), p. 38.
88.
Idem, p. 41.
89.
Idem, p. 38.
90.
Lee et al. (2016), p. 177. See also Mouriquand et al. (2016) and Baratz (2016).
91.
Elders et al. (2017), p. 2.
92.
Idem, 2017, p. 3.
93.
Ghattas (2013).
94.
Idem, p. 19.
95.
Idem.
96.
On the detrimental effects of intersex surgeries see also Garland (2016), Scherpe et al. (2018), Ittelson and Tamar-Mattis (2016), Feder and Dreger (2016), Diamond and Garland (2014) and Greenberg (2012).
97.
Tamar-Mattis (2012), p. 6.
98.
Idem, pp. 7–8.
99.
Idem, p. 8.
100.
“Cisnormativity” has been described as “the assumption that all, or almost all, individuals are cisgender. At best, cisnormativity contributes to the erasure of trans* and nonbinary experiences. At worst, it is part of a deliberate and calculated system of oppression that includes institutionalized cissexism, transphobia as well as interophobia” (The Queer Dictionary, “Definition of “Cisnormativity””). The term has appeared in several articles including the article ““We don’t exist”: a qualitative study of marginalization experienced by HIV-positive lesbian, bisexual, queer and transgender women in Toronto, Canada” published by the Journal of the International AIDS Society”. In the article “I don’t think this is theoretical; this is our lives”: How erasure impacts health care for transgender people on the Journal of the Association of Nurses in AIDS Care, the term “cisnormativity” has been described as “the expectation that all people are cissexual, that those assigned male at birth always grow up to be men and those assigned female at birth always grow up to be women. This assumption is so pervasive that it otherwise has not yet been named. Cisnormative assumptions are so prevalent that they are difficult at first to even recognize. Cisnormativity shapes social activity such as child rearing, the policies and practices of individuals and institutions, and the organization of the broader social world through the ways in which people are counted and health care is organized. Cisnormativity disallows the possibility of trans existence or trans visibility. As such, the existence of an actual trans person within systems such as health care is too often unanticipated and produces a social emergency of sorts because both staff and systems are unprepared for this reality.”
101.
According to WHO, female genital mutilation/cutting comprises all procedures that involve partial or total removal of the external female genitalia, or other injury to the female genital organs for non-medical reasons (WHO, “Female genital mutilation”). The NHS defines FGM/C as the procedure where the female genitals are deliberately cut, injured or changed, but where there’s no medical reason for this to be done”.
102.
WHO, “Female genital mutilation”.
103.
Idem.
104.
Idem.
105.
Idem.
106.
Ehrenreich and Mark (2005), p. 120.
107.
Cheryl Chase also uses the term Intersex Genital Mutilation (IGM).
108.
Chase (2002), p. 140.
109.
Ehrenreich and Mark (2005).
110.
Convention on the Rights of the Child, article 24 para. 3 “States Parties shall take all effective and appropriate measures with a view to abolishing traditional practices prejudicial to the health of children.”
111.
The UN Special Rapporteur on Health has stated that partial clitoridectomy as part of the treatment of intersex persons is a form of female genital mutilation (A/HRC/32/33 para 56).
112.
OII Europe, Malta Declaration, 1 December 2013.
113.
OII Europe, Statement of Riga, 2014.
114.
OII Europe, Statement of the 1st European Intersex Community Event, Vienna, 2017.
115.
Darlington Statement, 2017, para. 7.
116.
Public Statement by the Asian Intersex Movement, 2018, paras. 5 and 8 and Public Statement by the African Intersex Movement, 2017, “Demands”.
117.
United Nations Human Rights Office of the High Commissioner, Intersex Awareness Day, “End violence and harmful medical practices on intersex children and adults, UN and regional experts urge”, 2016.
118.
Global Citizenship Commission, Appendix E, p. 1.
119.
OHCHR (2002), p. 3.
120.
Universal Declaration of Human Rights, adopted by the General Assembly of the United Nations on 10 December 1948 “Article 5: No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment.”
121.
International Covenant on Civil and Political Rights, entry into force 23 March 1976.
122.
Convention on the Rights of the Child, Adopted and opened for signature, ratification and accession by General Assembly resolution 44/25 of 20 November 1989 entry into force 2 September 1990, in accordance with article 49.
123.
A/HRC/22/53, 2013.
124.
Idem, para. 76.
125.
A/HRC/19/41, 2011, para. 56.
126.
A/HRC/31/57, 2016, para. 50.
127.
InterAct, “New UN Special Rapporteur on Torture Report addresses Intersex issues among others”.
128.
European Convention on Human Rights as amended by Protocols Nos, 11 and 14, supplemented by Protocols Nos, 1,4,6,7,12 and 13 “Article 3 (Prohibition of torture): No one shall be subjected to torture or to inhuman or degrading treatment or punishment.”
129.
Details of Treaty No.126, European Convention for the Prevention of Torture and Inhuman or Degrading Treatment or Punishment, 1987.
130.
OII, “Intersex resolution adopted by the Parliamentary Assembly of the Council of Europe”.
131.
PACE, Resolution 2191, 2017.
132.
PACE, Doc. 14404, 2017, paras. 37 and 38.
133.
Tamar-Mattis (2012), p. 10.
134.
Child Rights International Network, “Bodily Integrity”.
135.
See Article 9 of the ICCPR para. 1 “Everyone has the right to liberty and security of person. No one shall be subjected to arbitrary arrest or detention. No one shall be deprived of his liberty except on such grounds and in accordance with such procedure as are established by law.” and Article 5 of the ECHR “Everyone has the right to liberty and security of person. No one shall be deprived of his liberty save in the following cases and in accordance with a procedure prescribed by law (…)”.
136.
See Article 17 of the ICCPR para. 1 “No one shall be subjected to arbitrary or unlawful interference with his privacy, family, home or correspondence, nor to unlawful attacks on his honour and reputation” and Article 8 of the ECHR para. 1 “Everyone has the right to respect for his private and family life, his home and his correspondence.”. See also Y.F v. Turkey, judgment of 22 July 2003, Bensaid v. the U.K, judgment of 6 February 2001 and Storck v. Germany, judgment of 16 June 2005.
137.
See Article 12 para 1 of the ICESC “1. The States Parties to the present Covenant recognize the right of everyone to the enjoyment of the highest attainable standard of physical and mental health.” And Article 11 of the European Social Charter (ESC) “With a view to ensuring the effective exercise of the right to protection of health, the Parties undertake, either directly or in cooperation with public or private organisations, to take appropriate measures designed inter alia (…)”.
138.
CCPR/C/107/R.3, 2015.
139.
Convention on the Rights of the Child, Adopted and opened for signature, ratification and accession by General Assembly resolution 44/25 of 20 November 1989 entry into force 2 September 1990, in accordance with article 49.
140.
CRC/C/CHE/CO/2-4, 2015, paras. 42-43.
141.
Y.F v. Turkey, judgment of 22 July 2003 para. 33.
142.
Bensaid v. the U.K, judgment of 6 February 2001, para. 47.
143.
Idem, para. 46.
144.
Storck v. Germany, judgment of 16 June 2005, para. 143.
145.
In Bensaid v. UK, the Court mentions in para. 34: “While it is true that Article 3 has been more commonly applied by the Court in contexts in which the risk to the individual of being subjected to any of the proscribed forms of treatment emanates from intentionally inflicted acts of the public authorities or non-State bodies in the receiving country (e.g. the Ahmed v. Austria judgment, loc. cit., § 44), the Court has, in light of the fundamental importance of Article 3, reserved to itself sufficient flexibility to address the application of that Article in other contexts which might arise”. Then, in para. 46 the Court clarifies the scope of Articles 3 and 8: “Not every act or measure which adversely affects moral or physical integrity will interfere with the right to respect to private life guaranteed by Article 8. However, the Court’s case-law does not exclude that treatment which does not reach the severity of Article 3 treatment may nonetheless breach Article 8 in its private life aspect where there are sufficiently adverse effects on physical and moral integrity (see the Costello-Roberts v. the United Kingdom judgment of 25 March 1993, Series A no. 247-C, § 36)”.
146.
Hembach Legal, “Physical and psychological integrity pursuant to article 8 ECHR”. See also Y.F v. Turkey, judgment of 22 July 2003, Bensaid v. the U.K, judgment of 6 February 2001 and Storck v. Germany, judgment of 16 June 2005.
147.
Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, 4.IV.1997.
148.
Charter of Fundamental Rights of the European Union, 2000/C 364/01.
149.
It should be noted that, in its judgment of 9 October 2001 in Case C-377/98 Netherlands v European Parliament and Council, the Court of Justice confirmed that a fundamental right to human integrity is part of Union law and encompasses, in the context of medicine and biology, the free and informed consent of the donor and recipient.
150.
Yogyakarta principle 32, 2007.
151.
DeLaet (2012), p. 556.
152.
See Sect. 2.2.3.
153.
WHO, “Male circumcision for HIV prevention”.
154.
See Landgericht Köln, 151 Ns 169/11.
155.
DeLaet (2012), p. 557.
156.
Idem, p. 556.
157.
Macioce (2011), p. 2.
158.
Idem.
159.
Universal Declaration of Human Rights, Adopted by the General Assembly of the United Nations on 10 December 1948.
160.
A/HRC/31/57, 2016, para. 49.
161.
Pretty v. the UK, judgment of 29 April 2002, para. 61.
162.
Van Kück v. Germany, judgment of 12 June 2003, para. 73.
163.
Idem, para. 75.
164.
Idem, para. 56.
165.
Koffemena (2010), p. 46.
166.
Yogyakarta principles, 2007.
167.
See Sect. 2.3.4.
168.
Stanley (2014), p. 91.
169.
Jones (2009), abstract.
170.
Constitution of the World Health Organization, Preamble, Basic Documents, Forty-fifth edition, Supplement, October 2006.
171.
Article 25 para. 1 “(1) Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.”.
172.
Article 12 para. 1 “1. The States Parties to the present Covenant recognize the right of everyone to the enjoyment of the highest attainable standard of physical and mental health.”.
173.
Article 24 para. 1 “1. States Parties recognize the right of the child to the enjoyment of the highest attainable standard of health and to facilities for the treatment of illness and rehabilitation of health. States Parties shall strive to ensure that no child is deprived of his or her right of access to such health care services.”. See also CRC/C/GC/15, 2013.
174.
CESCR General Comment No. 14: The Right to the Highest Attainable Standard of Health (Art. 12), 2000, para. 33.
175.
Idem.
176.
Yamin (2005), p. 1157.
177.
Article 11 “Everyone has the right to benefit from any measures enabling him to enjoy the highest possible standard of health attainable.” and Article 13 “Anyone without adequate resources has the right to social and medical assistance.”
178.
Article 35 “Everyone has the right of access to preventive health care and the right to benefit from medical treatment under the conditions established by national laws and practices. A high level of human health protection shall be ensured in the definition and implementation of all Union policies and activities.”.
179.
CESCR General Comment No. 14: The Right to the Highest Attainable Standard of Health (Art. 12), 2000, para. 3.
180.
Lind (2011), p. 76.
181.
Human Rights Watch and Interact (2017), p. 142. See also Carpenter (2016) and Garland (2016).
182.
Zillén et al. (2017), p. 80.
183.
Council of Europe (2015), p. 32.
184.
WHO (2015), p. 26.
185.
A/HRC/31/57, para. 48.
186.
A/HRC/19/41, para. 56.
187.
A/HRC/22/53, para. 38.
188.
A/HRC/31/57, para. 72 (g).
189.
Garland (2016), pp. 442–443.
190.
Kahn (2002), p. 190. See also Van Kersbergen and Vis (2014) and Kuhnle and Sander (2010).
191.
Yamin (2005), p. 1157.
192.
Kahn (2002), p. 193.
193.
Yamin (2005), p. 1157. See also Lane and Mæland (1998), Skillen (1985) and Fujimura (2000).
194.
Gough et al. (2008), p. 495. See also Crissman et al. (2011).
195.
See also Steuli et al. (2013); Dayner et al. (2004); Daaboul and Frader (2001); Greenberg (2012).
196.
See also Ittelson and Tamar-Mattis (2016) and Greenberg (2012).
197.
Kessler (1990).
198.
Hester (2004a, b), p. 22.
199.
Article 3 para. 1 of the CRC “In all actions concerning children, whether undertaken by public or private social welfare institutions, courts of law, administrative authorities or legislative bodies, the best interests of the child shall be a primary consideration”.
200.
Council of Europe (2015), p. 20.
201.
Alderson (2007), p. 2279.
202.
Garland (2016), p. 291.
203.
Hester (2004a, b), p. 22.
204.
M.A.K. and R.K. v. the United Kingdom, judgment of 23 June 2010.
205.
European Court of Human Rights (2015), p. 12.
206.
See also Salako (2011).
207.
Kilkelly and Donnelly (2006), p. 11.
208.
Zillén et al. (2017), p. 44. See also Garland (2016), Hester (2004a, b) and Ford (2001).
209.
See United Nations: Human Rights Council, A/HRC/19/41, 2011 and A/HRC/29/23, 2015, Report of the Special Rapporteur on Torture to the UN General Assembly A/HRC/22/53, 2013 and A/HRC/31/57, 2016. See also Council of Europe: Parliamentary Assembly of the Council of Europe (PACE), Resolution 1952, 2013 and Resolution 2191, 2017.
210.
Zillén et al. (2017), p. 44.
211.
See Fountedaki (2004).
212.
Idem.
213.
On new perspectives on the management of intersex see also Feder (2014) and Hermer (2002).
214.
UNESCO, “Communication and Information”.
215.
Universal Declaration of Human Rights, adopted by the General Assembly of the United Nations on 10 December 1948.
216.
A/HRC/31/57, 2016, para. 48.
217.
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.
218.
Council of Europe, Committee of Ministers, Recommendation No. R (97) 5 on the Protection of Medical Data, 1997, paras. 8.1 and 8.2.
219.
Tiilika (2013), p. 79.
220.
K.H. and Others v. Slovakia, judgment of 28 April 2009, para. 68.
221.
Idem, para. 64-65.
222.
Council of Europe (2015), p. 33.
223.
Chase (1998), pp. 303–304.
224.
Idem.
225.
Public Statement by the African Intersex Movement, 2017, “Demands” and Public Statement by the Asian Intersex Movement, 2018, para. 31.
226.
OII Europe, Statement of the 1st European Intersex Community Event, Vienna, 2017.
227.
Darlington Statement, 2017, para. 8.
228.
Idem.
229.
Idem.
230.
Darlington Statement, 2017, para. 12.
231.
Public Statement by the Asian Intersex Movement, 2018, para. 19.
232.
A/HRC/19/41, 2011, para. 71.
233.
A.P., Garçon and Nicot v. France, judgment of 6 April 2017, para. 135.
234.
Transgender Europe, Trans Network Balkan, ILGA Europe, Subversive Front, 2017, para. 11.
235.
Council of Europe (2015), pp. 37–40.
236.
Idem.
237.
Idem, p. 40.
238.
The Yogyakarta Principles plus 10, As adopted on 10 November 2017, para. 31.
239.
A/HRC/31/37, 2016, para. 22.
240.
Idem, para. 26.
241.
Idem, para. 23.
242.
Committee on Economic, Social and Cultural, General comment No. 4, para. 6, General comment No. 4, para. 6.
243.
Christine Goodwin v. U.K., judgment of 11 July 2002.
244.
Valleala (2014), p. 34.
245.
Idem.
246.
“The right to marry and the right to found a family shall be guaranteed in accordance with the national laws governing the exercise of these rights.”
247.
Christine Goodwin v. U.K., judgment of 11 July 2002, para. 100.
248.
Council of Europe (2015), p. 25.
249.
The Yogyakarta Principles plus 10, Relating to the right to found a family (Principle 24).
250.
Arora (2017), p. 5.
251.
See Costa and Pavan v. Italy, application no. 54270/10, final judgment 11 February 2013.
252.
See S.H. and Others v. Austria, application no. 57813/00, 1 April 2010.
253.
Arora (2017), p. 3.
254.
See Costa and Pavan v. Italy, application no. 54270/10, final judgment 11 February 2013.
255.
See Ghattas (2013).
256.
United Nations and the Rule of Law, “Equality and Non-discrimination”. See also Sect. 1.3.2.
257.
Agius (2015), p. 19.
258.
E/C.12/GC/20, 2009, para. 32.
259.
Campbell (2015), p. 487.
260.
See Jallow v. Bulgaria, 2012; S.V.P. v. Bulgaria, 2012; Kell v. Canada, 2012; A.S. v. Hungary, 2006; R. P. B. v. the Philippines, 2014; M.W. v. Denmark, 2016, among others and inquiries (in particular, concerning Mexico (2005) and Canada (2015)).
261.
CEDAW/C/GC/33, 2015, para. 8. See also other general recommendations relevant to intersectional discrimination: general recommendation No. 15 on women and AIDS, No. 18 on women with disabilities, No. 21 on equality in marriage and family relations, No. 24 on women and health, No. 26 on women migrant workers, No. 27 on older women and protection of their human rights, No. 30 on women in conflict prevention, conflict and post-conflict situations, No. 31 on harmful practices, No. 32 on the gender-related dimensions of refugee status, asylum, nationality and statelessness of women and No. 34 on the rights of rural women.
262.
CEDAW/C/GC/35, 2017, para. 12.
263.
United NatIons Free & Equal, Fact Sheet “Intersex”.
264.
See Sect. 4.2.
265.
Council of Europe (2015), p. 43.
266.
OII Europe, Malta Declaration, 2013, “Demands”.
267.
Public Statement by the African Intersex Movement, 2017, “Demands”.
268.
OII Europe, Statement of Riga, 2014, para. 2.
269.
Darlington Statement, 2017, para. 9.
270.
OII Europe, Statement of the 1st European Intersex Community Event, 2017.
271.
Darlington Statement, 2017, para. 11.
272.
ILO, 10. Gender Equality and Non-Discrimination.
273.
Universal Declaration of Human Rights, 1948, Article 23 paras 1 and 2.
274.
International Covenant on Economic, Social and Cultural Rights, 1966, Article 7.
275.
United Nations Human Rights Office of the High Commissioner (2017), p. 3.
276.
Australia and Malta explicitly prohibit discrimination in employment on grounds of sexual orientation, gender identity and sex characteristics (or intersex status, in the case of Australia) through specific legislation. South Africa, through legislative acts broadened the definition of the term “sex” in its anti-discrimination legislation and it should be read to include intersex (See the OHCHR booklet, “Living Free and Equal”).
277.
Idem, p. 29.
278.
The World Bank (2016), pp. 14–15.
279.
Christine Goodwin v. U.K., judgment of 11 July 2002, para. 85.
280.
Idem, para. 90.
281.
United Nations, Office on Sport for Development and Peace.
282.
Ireland-Piper and Weinert (2014), p. 7.
283.
Newbould (2016), p. 256.
284.
Idem.
285.
See International Association of Athletics Federations. IAAF Regulations Governing Eligibility of Females With Hyperandrogenism to Compete in Women’s Competitions and International Olympic Committee. IOC Regulations on Female Hyperandrogenism.
286.
IAAF Regulations Governing Eligibility of Females with Hyperandrogenism to Compete in Women’s Competitions para. 6.5 The Expert Medical Panel shall recommend that the athlete is eligible to compete in women’s competition if: (1) she has androgen levels below the normal male range; or (2) she has androgen levels within the normal male range but has an androgen resistance such that she derives no competitive advantage from having androgen levels in the normal male range.
287.
Sonksen et al. (2015), p. 825.
288.
See Devine (2018).
289.
See Teetzel (2006).
290.
Taryn Knox and Lynley Anderson, “Fairness and Inclusion: Is it time to replace the gender binary in elite sport?”.
291.
Pitsiladis et al. (2016), p. 387.
292.
Newbould (2016), pp. 257–258.
293.
Court of Arbitration for Sport, “The application of the IAAF Hyperandrogenism Regulations remains suspended”.
294.
Women’s Sports Foundation, p. 1.
295.
Idem.
296.
A/HRC/32/33, 2016, para. 55.
297.
Idem, para. 57.
298.
Newbould (2016), p. 258.
299.
Idem.
300.
CEDAW/C/GC/35, para. 12.
301.
See Magritte (2012).
302.
Zillén et al. (2017), p. 45.
303.
Henkin (1989), p. 10.
304.
See the United Nations 2030 Agenda for Sustainable Development.

Bibliography

Akchurin W, Kartzke R (2007) The ethics of gender selection. In: McIntosh D, Drabic R, Huber K, Vinogradov I, Bassick M (eds) The ethical imperative in the context of evolving technologies. University of Colorado Leeds School of Business, pp 21–33
Google Scholar
Dreger AD (1999) A history of intersexuality. In: Dreger AD (ed) Intersex in the age of ethics. University Publishing Group, Hagerstown
Google Scholar
Fausto-Sterling A (2000a) Sexing the body. Basic Books
Google Scholar
Feder KE (2014) Making sense of intersex: changing ethical perspectives in biomedicine. Indiana University Press
Google Scholar
Foucault M (1980) Herculine Barbin: being the recently discovered memoirs of a nineteenth century French hermaphrodite (trans: McDougall R). Pantheon Books, New York
Google Scholar
Foucault M (1996) The social extension of the norm in foucault live: collected interviews, 1961–1984. In: Lotringer S (ed) (trans: Honchroth L, Johnston J), 2nd edn. Semiotext (e), New York
Google Scholar
Fountedaki K (2004) Civil medical liability (in Greek). Sakkoulas
Google Scholar
Garland J (2016) On science, law, and medicine: the case of gender- “normalizing” interventions on children who are diagnosed as different in sex development. Uppsala University
Google Scholar
Ghattas C (2013) Human Rights between sexes: a preliminary study on the life situations of inter∗ individuals. Heinrich Böll Foundation
Google Scholar
Karkazis K (2008) Fixing sex: intersex, medical authority, and lived experience. Duke University Press
Google Scholar
Korff D (2006) The right to life: a guide to the implementation of Article 2 of the European Convention on Human Rights. In: Human rights handbooks No. 8, Council of Europe, pp 6–8
Google Scholar
Kuhnle S, Sander A (2010) The emergence of the welfare state. In: Castles FC, Leibfried S, Lewis J, Obinger H, Pierson C (eds) The Oxford handbook of the welfare state. Oxford University Press, Oxford
Google Scholar
Lind AS (2011) The Right to Health from a Constitutional Perspective – the Example of the Nordic Countries, in Nordic Health Law in a European Context Welfare State Perspectives on Patients’ Rights and Biomedicine. International Law E-books online, pp 67–76
Google Scholar
Morland I (2006) Postmodern intersex in ethics and intersex. Springer, Netherlands
Google Scholar
Ní Mhuirthile T (2015) Building bodies: a legal history of intersex in ireland in sexual politics in modern Ireland. Irish Academic Press
Google Scholar
Preves ES (2008) Intersex and identity: the contested self. Rutgers University Press
Google Scholar
Scherpe MJ, Dutta A, Helms T (eds) (2018) The legal status of intersex persons. Intersentia
Google Scholar
Van Kersbergen K, Vis B (2014) Comparative welfare state politics. development, opportunities, and reform. Cambridge University Press, Cambridge
Google Scholar
Alderson P (2007) Competent children? Minors consent to health care treatment and research. Soc Sci Med 65:2272–2283
Article Google Scholar
Arora P (2017) Right to access reproductive technologies – a right or a wrong? J For Med Leg Aff 2(1):114
Google Scholar
Baratz BA (2016) Re: “Surgery in disorders of sex development (DSD) with a gender issue: If (why), when, and how?”. J Pediatr Urol 12(6):442–443
Article Google Scholar
Bayefsky JM (2016) Comparative preimplantation genetic diagnosis policy in Europe and the USA and its implications for reproductive tourism. Reprod Biomed Soc Online 3:41–47
Article Google Scholar
Behrmann J, Ravitsky V (2013) Queer liberation, not elimination: why selecting against intersex is not “straight” forward. Am J Bioethics 13(10):39–59
Article Google Scholar
Campbell M (2015) CEDAW and women’s intersecting identities: a pioneering new approach to intersectional discrimination. Revista Direito GV, São Paulo 11(2):479–504
Article Google Scholar
Carpenter M (2016) The human rights of intersex people: addressing harmful practices and rhetoric of change. Reprod Health Matters 46(47):74–84
Article Google Scholar
Chase C (1998) Hermaphrodites with attitude: mapping the emergence of intersex political activism. GLQ A J Lesbian Gay Stud 4(2):189–211
Article Google Scholar
Chase C (2002) “Cultural practice” or “reconstructive surgery”? U.S. genital cutting, the intersex movement, and medical double standards. In: Stanlie MJ, Robertson CC (eds) Genital cutting and transnational sisterhood: disputing US polemics. University of Illinois Press, Urbana, pp 126–152
Google Scholar
Creighton MS, Michala L, Mushtaq I, Yaron M (2014) Childhood surgery for ambiguous genitalia: glimpses of practice changes or more of the same. Psychol Sex 5(1):34–43
Google Scholar
Creighton S (2001) Surgery for intersex. J Royal Soc Med 94(5):218–220
Article Google Scholar
Creighton S, Minto C (2001) Managing intersex: most vaginal surgery in childhood should be deferred. BMJ 323(7324):1264–1265
Article Google Scholar
Crissman HP, Warner L, Gardner M, Carr M, Schast A, Quittner AL, Kogan B, Sandberg DE (2011) Children with disorders of sex development: a qualitative study of early parental experience. Int J Pediart Endocrinol 1(10). https://doi.org/10.1186/1687-9856-2011-10
Article Google Scholar
Daaboul J, Frader J (2001) Ethics and the management of the patient with intersex: a middle way. J Pediatr Endocrinol Metab 14(9):1575–1583
Article Google Scholar
Damiano L (2011) When parents can choose to have the “Perfect” child: why fertility clinics should be required to report preimplantation genetic diagnosis data. Family Court Rev 49(4):846–859
Article Google Scholar
Davis G (2013) The social costs of preempting intersex traits. Am J Bioethics 13(10):51–53
Article Google Scholar
Dayner EJ, Lee AP, Hook PC (2004) Medical treatment of intersex: parental perspectives. J Urol 172(4):1762–1765
Article Google Scholar
DeLaet LD (2012) Genital autonomy, children’s rights, and competing rights claims in international human rights law. Int J Children’s Rights 20:554–583
Article Google Scholar
Devine WJ (2018) Gender, steroids, and fairness in sport. Ethics Philos 13(2):161–169. https://doi.org/10.1080/17511321.2017.1404627
Article Google Scholar
Diamond M, Garland J (2014) Evidence regarding cosmetic and medically unnecessary surgery on infants. J Pediatr Urol 10(1):2–6
Article Google Scholar
Ehrenreich N, Mark B (2005) Intersex surgery, female genital cutting, and the selective condemnation of “cultural practices”. Harv Civil Rights Civil Liber Law Rev 40:72–140
Google Scholar
Fausto-Sterling A (2000b) The five sexes, revisited. Sciences 40(4). https://pdfs.semanticscholar.org/21a4/4d10b40354a974c8d1d3a9a0e66fef731e75.pdf. Accessed 10 Dec 2018
Feder EK, Dreger A (2016) Still ignoring human rights in intersex care. J Pediatr Urol 12(6):436–437
Article Google Scholar
Fujimura M (2000) The welfare state, the middle class, and the welfare society. Rev Popul Soc Policy 9:1–23
Google Scholar
Ford K (2001) “First, do no harm”: the fiction of legal parental consent to genital-normalizing surgery on intersexed infants. Yale Law Policy Rev 19(2):469–488
Google Scholar
Gough B, Weyman N, Alderson J, Butler G, Stoner M (2008) They did not have a word’: the parental quest to locate a ‘true sex’ for their intersex children. Psychol Health 23(4):493–507
Article Google Scholar
Henkin L (1989) The universality of the concept of human rights. The annals of the American Academy of political and social science. Sage Publications, Inc. in association with the American Academy of political and social science. Human Rights Around World 506(1):10–16
Google Scholar
Hermer L (2002) Paradigms revised: intersex children, bioethics & the law. Ann Health Law 11(1):195
Google Scholar
Hester JD (2004a) Intersex (es) and informed consent: how physicians’ rhetoric constraints choice. Theoretical Medicine, Kluwer Academic Publishers 25:21–49
Google Scholar
Hester JD (2004b) Intersexes and the end of gender: corporeal ethics and postgender bodies. J Gender Stud 13(3):215–225
Article Google Scholar
Ireland-Piper D, Weinert K (2014) Is there a “Right” to Sport?. Bond University. Sports Law e-journal, https://works.bepress.com/danielle_irelandpiper/. Accessed 10 Feb 2018
Ittelson A, Tamar-Mattis A (2016) Avoiding liability in the treatment of intersex patients. J Pediatr Urol 16(6):439–440
Article Google Scholar
Jones L (2009) The third sex: gender identity development of intersex persons. Grad J Couns Psychol 1(2):10–16
Google Scholar
Kahn JA (2002) Explaining the Welfare State. The University of Chicago Press. Soc Serv Rev 76(75th Anniversary):189–195
Google Scholar
Kessler JS (1990) The medical construction of gender: case management of intersex infants. Signs J Women Cult Soc 16(1):3–21
Article Google Scholar
Lane J-E, Mæland R (1998) Welfare states or welfare societies? Statsvetenskaplig Tidskrift 2:1–20
Google Scholar
Lee AP, Nordenström A, Houk PC, Ahmed SF, Auchus R, Baratz A, Baratz DK, Liao L-M, Lin-Su K, Looijenga 3rd LH, Mazur T, Meyer-Bahlburg HF, Mouriquand P, Quigley AC, Sandberg ED, Vilain E, Witchel S and the Global DSD Update Consortium (2016) Global disorders of sex development update since 2006: perceptions, approach and care. Hormone Res Pediatr 85:158–180
Google Scholar
Macioce F (2011) Individual liberty and self-determination. Libertarian Pap 3(3):1–18
Google Scholar
Magritte E (2012) Working together in placing the long term interests of the child at the heart of the DSD evaluation. J Pediatr Urol 8(6):571–575
Article Google Scholar
Mouriquand PDE, Brindusa GD, Gay C-L, Meyer-Bahlburg HFL, Baker L, Baskin LS, Bouvattier C, Braga LH, Caldamone AC, Duranteau L, Ghoneimim AEL, Hensle TW, Hoebeke P, Kaefer M, Kalfa N, Kolon TF, Manzoni G, Mure P-Y, Lee P (2016) Surgery in disorders of sex development (DSD) with a gender issue: If (why), when, and how? J Pedriatr Urol 12(93):139–149
Article Google Scholar
Newbould MJ (2016) What do we do about women athletes with testes? Med Ethics 42:256–259
Article Google Scholar
Nisker J (2013) Informed choice and PGD to prevent “intersex conditions”. Am J Bioeth 13(10):47–49
Article Google Scholar
Pitsiladis Y, Harper J, Betancurt OJ, Matrinez-Patino M-J, Parisi A, Wang G, Pigozzi F (2016) Beyond fairness: the biology of inclusion for transgender and intersex athletes. Curr Sports Med Rep 15(6):386–388
Article Google Scholar
Reis E, Kessler S (2010) Why history matters: fetal sex and intersex. Am J Bioeth 10(9):58–59
Article Google Scholar
Robertson AJ (2003) Procreative liberty in the era of genomics. Am J Law Med 29:439–487
Google Scholar
Salako SE (2011) Informed consent under the European Convention on biomedicine and the UNESCO declaration on bioethics. Med Law 30(1):101–113
Google Scholar
Shelby Deeney M (2013) Bioethical considerations of preimplantation genetic diagnosis for sex selection. Wash Univ Jurisp Rev 5(2):333–360
Google Scholar
Skillen A (1985) Welfare State versus welfare society? J Appl Philos 2(1):3–17
Article Google Scholar
Skopalová J (2010) Social deviations, labelling and normality. Human Aff 20:327–337
Google Scholar
Sonksen P, Ferguson-Smith AM, Bavington LD, Holt IGR, Cowan AD, Catlin HD, Kidd B, Davis G, Davis P, Edwards L, Tamar-Mattis A (2015) Medical and ethical concerns regarding women with hyperandrogenism and elite sport. J Clin Endocrinol Metab 100(3):825–827
Article Google Scholar
Sparrow R (2013) Gender eugenics? The ethics of PGD for intersex conditions. Am J Bioeth 13(10):29–38
Article Google Scholar
Stanley AE (2014) Gender Self-Determination. University of Melbourne, pp 89–91. https://ericastanleydotnet.files.wordpress.com/2014/06/gender-self-determination-stanley-tsq.pdf. Accessed 5 Mar 2019
Article Google Scholar
Steuli CJ, Vayena E, Cavicchia-Balmer Y Huber J (2013) Shaping parents: impact of contrasting professional counseling on parents’ decision making for children with disorders of sex development. J Sex Med 10:1953–1960
Google Scholar
Teetzel S (2006) On transgendered athletes, fairness and doping: an international challenge. Sport Soc 9(2):227–251
Article Google Scholar
Thorn DE (2014) Drop the Knife! Instituting policies of nonsurgical intervention for intersex infants. Family Court Rev 52(3):610–621
Article Google Scholar
Valleala A (2014) Legal recognition of same-sex family life in the jurisprudence of the European Court of Human Rights Master’s thesis published by the University of Helsinki
Google Scholar
Wellman M (1958) The concept of normal in medicine. Can Med Assoc J 79:43–45
Google Scholar
Yamin EA (2005) The right to health under international law and its relevance to the United States. Am J Public Health 95(7):1156–1161
Article Google Scholar
Zhou C, Zhou X, Lei Wang X, Hesketh T (2011) Son preference and sex-selective abortion in China: informing policy options. Int J Public Health 57(3):459–465
Article Google Scholar
Agius S (2015) “Human Rights and Intersex People”, Issue Paper, https://s3cdn-observadorontime.netdna-ssl.com/wp-content/uploads/2015/05/issuepaper-on-intersex2015_en.pdf
Center for Reproductive Rights (2012) “Whose Right to Life? Women’s Rights and Prenatal Protections under Human Rights and Comparative Law”, available on https://www.reproductiverights.org/sites/crr.civicactions.net/files/documents/RTL_3%2014%2012.pdf
European Court of Human Rights (2016) Research Report “Bioethics and the case-law of the Court”, https://www.echr.coe.int/Documents/Research_report_bioethics_ENG.pdf
European Court of Human Rights (2015) Thematic Report “Health-related issues in the case-law of the European Court of Human Rights”, https://www.echr.coe.int/Documents/Research_report_health.pdf
Human Rights Watch and Interact (July 2017) “I Want to Be Like Nature Made Me” Medically Unnecessary Surgeries on Intersex Children in the US, available on https://interactadvocates.org/wp-content/uploads/2017/07/Human-Rights-Watch-interACT-Report-Medically-Unnecessary-Surgeri-on-Intersex-Children-in-the-US.pdf
Human Genetics Alert (December 2002) “The case against sex selection”, Human Genetics Alert Campaign Briefing
Google Scholar
Kilkelly U, Donnelly M (2006) “The Child’s Right to be heard in the Healthcare Setting: Perspectives of children, parents and health professionals”, https://www.dcya.gov.ie/documents/research/The_Childs_Right_to_be_Heard_in_the_Healthcare_Setting.pdf
Koffemena NR (June 2010) “(The right to) personal autonomy in the case law of the European Court of Human Rights”. Thesis, University of Leiden, https://openaccess.leidenuniv.nl/bitstream/handle/1887/15890/N.R.+Koffeman+-+(The+right)+to+personal+autonomy+in+the+case+law+of+the+ECtHR+(2010).pdf;jsessionid=CCE1BCA991B6F07C20983D3CBCA63C81?sequence=3
Lee AP, Houk PC, Ahmed F, Hughes A (2006) Ieuan in collaboration with the participants in the International Consensus Conference on Intersex organized by the Lawson Wilkins Pediatric Endocrine Society and the European Society for Paediatric Endocrinology, “Consensus Statement on Management of Intersex Disorders”, available on http://pediatrics.aappublications.org/content/118/2/e488?sso=1&sso_redirect_count=1&nfstatus=401&nftoken=00000000-0000-0000-0000-000000000000&nfstatusdescription=ERROR%3a+No+local+token
OHCHR (2002) Factsheet: “No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment”, available on http://www.ohchr.org/Documents/Publications/FactSheet4rev.1en.pdf
OII Europe, Malta Declaration (1 December 2013) available on https://oiieurope.org/malta-declaration/
Pinde R, Malhotra A (2006) “Son Preference and Daughter Neglect in India, What happens to Living Girls?”, International Center for Research on Women, https://www.unfpa.org/sites/default/files/resource-pdf/UNFPA_Publication-39764.pdf
Tamar-Mattis A (2012) “Medical Treatment of People with Intersex Conditions as Torture and Cruel, Inhuman or Degrading Treatment or Punishment”, Report to the UN Special Rapporteur on Torture, available on https://interactadvocates.org/wp-content/uploads/2017/03/interACT-Report-for-UNSRT-on-Intersex.pdf
The World Bank (2016) Investing in a research revolution for LGBTI inclusion http://documents.worldbank.org/curated/en/196241478752872781/pdf/110035-WP-InvestinginaResearchRevolutionforLGBTIInclusion-PUBLIC-ABSTRACT-SENT.pdf
United Nations Free & Equal (2016) “Factsheet Intersex”, available on https://unfe.org/system/unfe-65-Intersex_Factsheet_ENGLISH.pdf
United Nations Human Rights Office of the High Commissioner (2017) “Tackling Discrimination against Lesbian, Gay, Bi, Trans, & Intersex People, Standards of Conduct for Business”, available on https://www.unfe.org/wp-content/uploads/2017/09/UN-Standards-of-Conduct.pdf
WHO (June 2015) “Sexual health, human rights and the law”, available on http://www.who.int/reproductivehealth/publications/sexual_health/sexual-health-human-rights-law/en/
Zillén K, Garland J, Slokenberga S (11 January 2017) “The Rights of Children in Biomedicine: Challenges posed by scientific advances and uncertainties”, Commissioned by the Committee on Bioethics for the Council of Europe
Google Scholar
Lear J (2007) “Unnecessary surgery on intersex infants: Problems of theory become problems in practice”, Master’s Thesis in Applied Ethics Centre for Applied Ethics Linköpings universitet, presented May 2007
Google Scholar

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Pikramenou, N. (2019). Eliminating the “Abnormal”. In: Intersex Rights. Springer, Cham. https://doi.org/10.1007/978-3-030-27554-9_2

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