“Inferior”, “Abnormal”, “Deformed”: Intersex, IGM and the UN Convention on the Rights of People with Disabilities (CRPD)

The following is an excerpt from an NGO submission by StopIGM.org / Zwischengeschlecht.org to the UN Special Rapporteur on the rights of persons with disabilities
>>> fulltext DOC (83 kb) | PDF (102 kb
for a Study on the sexual and reproductive health and rights of girls with disabilities (more info), to be presented at the upcoming 72nd session of the UN General Assembly starting on 12 September .

4. “Inferior”, “Abnormal”, “Deformed”: Intersex, IGM and the CRPD

Individual doctors, national and international medical bodies, public and private healthcare providers have traditionally been framing and “treating” intersex variations as a form of disability in need to be “cured” surgically, often with racist, eugenic and suprematist undertones.  [10] [11] [12] [13]

It is important to note that Intersex is an umbrella term for many diverse variations and “diagnoses”, of which only a few specific and comparatively rare conditions represent an immediate medical situation or impairment, notably Congenital Adrenal Hyperplasia (CAH) in the salt-losing form which constitutes a vital (metabolical) medical need for daily hormone substitution of lacking cortisol – however, this does NOT constitute a need for genital surgeries!

Nonetheless, doctors persistently use this specific exception as a justification for imposing unnecessary genital surgery and other treatments on ALL persons with variations of sex anatomy to “fix” them. [14]

Thus, as a result of having been submitted to IGM practices, most intersex people have actual physical and psychological impairments and medical needs (chronic pain, loss of sexual sensibility, lifelong psychological trauma, metabolic problems, and need for daily hormone substitution after castration, etc.). Many can’t work anymore, and live in poverty due to persistent barriers preventing them from full and effective participation in society on an equal basis as well as from the full enjoyment of all human rights, including their rights to physical integrity and self-determination, their rights to freedom from violence, harmful practices and torture or ill-treatment, their rights to the best attainable standard of health, and their rights to justice, redress and compensation. For example in Germany, many IGM survivors are officially recognised as “disabled” due to the consequences of IGM. [15]

On top, both IGM survivors and intersex persons having escaped surgery are facing (fear of) stigmatisation, ostracism and rejection by modern society because of their (sometimes) “unusual appearance”, compounded by doctors’ constant conjuring up the birth of an intersex child as a “psycho-social emergency” and qualifying it as a “Disorder” in need of urgent involuntary “treatment”.

Accordingly, the easier an intersex trait can be tested prenatally, the higher the (selective) abortion rates, [16] most intersex diagnoses are listed as permissible for deselection in State sponsored preimplantation genetic diagnosis (PGD) guidelines [17], and e.g. in Switzerland IGM practices are paid for by the Federal Disability Insurance. [18]

In consequence, intersex persons and organisations are applying the social model of disability to devise strategies in their fight for bodily integrity and recognition as fully human beings, often in collaboration with disability groups. As Jay Hayes-Light of UKIA, an IGM survivor as well as wheelchair user (due to an accident not related with his intersex condition) puts it: [19]

“Medical practitioners view intersex as something that needs to be fixed. We are regarded as deformed, somehow in deficit anatomically, and therefore the way to fix it is to cobble us together into what they deem to be an acceptable format, instead of allowing us to exist in society.”

[10] 2014 CRC NGO Report, p. 52, 69, 84, http://intersex.shadowreport.org/public/2014-CRC-Swiss-NGO-Zwischengeschlecht-Intersex-IGM_v2.pdf

[11] In the WHO “World Atlas of Birth Defects (2nd Edition)”, many intersex diagnoses are listed, including “indeterminate sex” and “hypospadias”: http://web.archive.org/web/20160305152127/http://prenatal.tv/lecturas/world%20atlas%20of%20birth%20defects.pdf

[12] “The Racist Roots of Intersex Genital Mutilations” https://www.stopigm.org/post/Racist-Roots-of-Intersex-Genital-Mutilations-IGM

[13] For 500 years of “scientific” prejudice in a nutshell, see 2016 CEDAW France NGO Report, p. 7, http://intersex.shadowreport.org/public/2016-CEDAW-France-NGO-Zwischengeschlecht-Intersex-IGM.pdf

[14] This excuse constitutes also the historic root for imposing systematic unnecessary early surgeries, see 2014 CRC NGO report, p. 54–56 http://intersex.shadowreport.org/public/2014-CRC-Swiss-NGO-Zwischengeschlecht-Intersex-IGM_v2.pdf

[15] For example in Germany, see 2015 CRPD Germany NGO Report, p. 16, http://intersex.shadowreport.org/public/2015-CRPD-LoI-Germany_NGO-Report_Zwischengeschlecht_Intersex-IGM.doc

[16] For stats and references, see “Selective Intersex Abortions: XXY 74%, Indeterminate Sex 47%, Hypospadias 2%”, https://www.stopigm.org/post/Selective-Intersex-Abortions-Hypospadias-Intersex-XXY

[17] For example in the UK, see http://guide.hfea.gov.uk/pgd/ [Note: The HFEA homepage is under reconstruction, currently the list can be found at https://www.hfea.gov.uk/pgd-conditions/], See also 2014 CRC NGO Report, p. 76, http://intersex.shadowreport.org/public/2014-CRC-Swiss-NGO-Zwischengeschlecht-Intersex-IGM_v2.pdf

[18] See 2014 CRC NGO Report, p. 76, http://intersex.shadowreport.org/public/2014-CRC-Swiss-NGO-Zwischengeschlecht-Intersex-IGM_v2.pdf

[19] https://www.theguardian.com/world/2016/jul/02/male-and-female-what-is-it-like-to-be-intersex

Intersex, IGM and CRPD: 2017 Submission to SR Disability
Sexual and reproductive health and rights of girls with disabilities
IGM and CRPD • Harmful Stereotypes and Prejudice • Harmful Practice
>>> Download DOC (83 kb) | PDF (102 kb)

IGM Practices in the UK: 2017 NGO Report to CRPD
Human Rights Violations Of Children With Variations Of Sex Anatomy
IGM and CRPD • UK & NHS violating Human Rights • Right to Integrity
>>> Download DOC (486 kb) | PDF (254 kb)  

See also:
• 23 UN Reprimands for IGM – and counting …
• “Harmful Medical Practice”: UN, COE, ACHPR, IACHR condem IGM

Intersex Genital Mutilations • 17 Most Common Forms
Human Rights Violations Of Children With Variations Of Sex Anatomy
IGM – Historical Overview • What is Intersex? • How Common are IGMs?
>>> Download PDF (3.65 MB)     >>> Table of Contents

IGM as a Harmful Practice: 2015 UN-CRC Briefing
• IGM: A Survivor’s Perspective • Intersex Movement History
• What are Variations of Sex Anatomy?  • What are IGM Practices?
• IGM and Human Rights  • Conclusion: IGM as a Harmful Practice
>>> Download PDF (3.14 MB)     >>> Table of Contents