Africa / Americas / Europe

Intersex rights (often violated) are human rights

Logo of the Association of Russian-speaking Intersex People

Logo of the Association of Russian-speaking Intersex People

The “I” in LGBTI activism is the focus of a new report that spells out what’s at stake in the growing field of intersex advocacy.

The freely downloadable document We Are Real: The Growing Movement Advancing the Human Rights of Intersex People from the Astraea Lesbian Foundation for Justice
seeks to “share and promote relevant knowledge and understanding of intersex issues and activism to people across the world.”

Readers of this blog are aware of a particularly horrifying example of anti-intersex violence that occurred in December 2015 — the fatal mutilation of intersex Kenyan teenager Muhadh Ishmael because he did not conform to their expectations for him.

For many intersex people, human rights violations are much less violent but much more common, as the report’s executive summary notes:

Intersex issues lie at the intersection of many human rights concerns. If your work touches on health rights, sexual and reproductive rights, social justice or civil rights, it is connected to the human rights of intersex people. If you are focused on the human rights of women, children, people with disabilities or LGBT people, you are already working on the issues that concern intersex people. It’s time to explicitly recognize these connections and support intersex activists’ struggles to affirm their rights.

Activists for the rights of intersex people have had to break through a powerful veil of stigma and social exclusion that has made intersex people and their concerns invisible for too many years. The medicalization of intersex bodies and lives has kept intersex issues largely out of public discourses. Because of this, the human rights violations intersex people face were, for years, hidden or ignored. A growing awareness of these rights abuses has come primarily through the efforts of a small but growing number of intersex advocates, intersex scholars and their allies.

Intersex activism is a growing field, with organizations that are both intersex-led and intersex-focused currently working in 27 countries worldwide. The majority of them are in Western Europe or North America, but several are in more repressive nations, including the Association of Russian-speaking Intersex People in Russia and the United States and the Support Initiative for People with atypical Sex Development (SIPD) in Uganda.

Photo from the SIPD website.

Photo from the website of the Support Initiative for People with atypical Sex Development (SIPD.

This the report’s discussion of violations of the human rights of intersex people:

Human Rights Issues

The idea that all bodies should fit neatly into mutually exclusive categories of “male” and “female” sexes ignores the diversity among us and perpetuates the stigma associated with being intersex. Such convictions are used to justify non-consensual and cosmetic medical interventions to make intersex bodies conform to societal and medical norms. They also underlie the discrimination that intersex people face in various aspects of daily life. Due to the dominance of the medical discourse, such harmful practices have only recently begun to be recognized as human rights violations. Only a few countries have explicit legal protections for intersex people, which means that abuses continue to this day and reparations or access to justice remain rare.

Around the world, intersex people face widespread and life-long violations of human rights recognized in the Universal Declaration of Human Rights; the International Covenant on Civil and Political Rights; the International Covenant on Economic, Social and Cultural Rights; the Convention Against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment; the Convention on the Rights of the Child; and the Convention on the Rights of Persons with Disabilities. …

Medicalization and Pathologization of Intersex Bodies

Juan E. Mendez, Special Rapporteur on torture and other cruel, inhuman or degrading treatment (Photo courtesy of Daily Mail)

Juan E. Mendez, Special Rapporteur on torture and other cruel, inhuman or degrading treatment (Photo courtesy of Daily Mail)

Many of the challenges intersex people face stem from the medical categorization of intersex variations as pathological. This perspective—that intersex traits are to be fixed and are disorders to be treated and repaired—has led to the widespread practice of harmful, unnecessary and non-consensual treatments conducted during infancy and childhood to “normalize” intersex bodies. These procedures violate individuals’ rights to self-determination, bodily integrity and physical autonomy. They come into conflict with children’s rights—to protection, to preserve their own identity, and to express their views about matters that affect them. In 2013, the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Juan E. Mendez, issued a statement condemning non-consensual surgical interventions on intersex people as a form of torture, as did other human rights bodies after that.

While some procedures could be needed on the basis of concrete health risks, most are conducted based primarily on social concerns, paying no or minimal attention to evidence of their long-lasting consequences.23 These procedures include genital surgeries, the surgical removal of reproductive tissues, and steroid or sex hormone treatments to “feminize” or “masculinize” intersex bodies. Such interventions are irreversible and can have serious and lifelong impacts like loss of sexual sensation, sterility, chronic pain, scarring, bleeding, chronic infections, osteoporosis, depression and trauma. Many individuals undergo multiple or repeated surgeries and invasive, often unnecessary associated procedures such as visual recording through pictures or videos, repeated physical examinations and mechanical dilations. Despite the harmful psychological and physical impacts, there is a general lack of follow up care and research regarding intersex people’s quality of life after undergoing these interventions.

Where parents have the legal right to provide informed consent on behalf of their child, they often do not receive the information, time and psychosocial support needed to make well-informed decisions. Frequently, these decisions are made under pressure, without information about the various and potentially harmful implications of surgeries, and without the opportunity to talk with intersex adults and their families. In some cases, a decision is made even before a child is born, where fetuses with intersex traits may be subjected to prenatal “normalizing” treatments or selected for abortion. In places where access to medical care is more limited and beliefs about intersex are deeply negative, the choices made can also be extreme; intersex rights groups report that in parts of Uganda and rural China, intersex infants may be abandoned or killed.

For many intersex people, interactions with the medical system are continually fraught. Intersex individuals who have undergone non-consensual “normalizing” treatments, as well as those who have not, describe the fear, mistrust and discomfort they experience when it comes to accessing health services. In seeking care, they risk becoming objects of curiosity, harassed and subjected to breaches of medical privacy. In addition to these deterrents to seeking routine or emergency care, intersex people face difficulties accessing treatments that meet their specific needs. They may be denied access to services, medication or insurance coverage under health care schemes that fail to recognize the needs of individuals whose bodies do not conform to stereotypical definitions of male and female; for example, where policies make certain treatments (e.g. breast cancer screening) available to individuals registered as one sex, but the individual seeking it is registered as another sex. These are clear violations of the right to the highest attainable standard of health.

Muhadh Ishmael in his hospital bed. (Photo by Joseph Odero)

The family of Kenyan intersex teenager Muhadh Ishmael arranged for his penis to be cut off because he refused to behave like a woman. He died from the resulting blood loss. (Photo by Joseph Odero)

The medicalization of intersex bodies also serves to make them socially stigmatized. The notion that intersex traits can be medically “repaired” implies that intersex bodies are inherently problematic and that “fixing” them requires erasing the problematic sex characteristics. This attitude casts a shadow of stigma and shame upon intersex people and their families. Intersex activists describe medical professionals who misrepresent or conceal the truth of their diagnosis from intersex patients; parents who have been advised not to speak openly with their intersex children about their bodies or to discuss the issue with others; and intersex individuals told they will never meet another person like them, who struggle with self-acceptance in silence and isolation. The sense of bearing shameful traits that merit erasing prevents many intersex people from seeking support or redress for the harms done to them. Moreover, evidence of these violations can be hard to recover; intersex individuals describe difficulties accessing medical records or discovering that their files have been altered or destroyed to conceal their history from them.

Discrimination Related to Legal Identity

Most countries require a child’s sex to be legally registered shortly after birth, typically within 30 days. The decision regarding the sex of a child is reflected in their identity documents (e.g. birth certificate, national ID and/or passport), which are needed in order to access services and participate in countless aspects of daily life. Therefore, the requirement of sex/gender assignment is used to prompt and justify “normalizing” interventions in infancy. For intersex individuals who identify with their assigned sex, this does not necessarily pose a challenge—though some intersex people experience violations related to not being recognized as their legal sex. For those who feel that the sex they were assigned at birth is incorrect or that the categories of male and female do not describe them, however, changing their legally registered sex or gender marker may prove difficult or impossible.

In many places, the barriers intersex people encounter in amending their legal sex/gender identification are similar to those that trans* people face. The laws governing these processes are often discriminatory and restrictive, including requirements such as a court order, psychological and medical examination, or confirmation from a medical expert that they have lived for a certain period of time in the gender role corresponding to the sex marker they are seeking. Because intersex status is not recognized or understood in many countries, intersex people may find themselves excluded by laws that only address the ability of trans* people to alter their official documents. In New Zealand, for example, trans* individuals can change the gender indicated on their passports via simple declaration and have the option to select M (male), F (female) or X (indeterminate/unspecified); however, the law does not state that intersex individuals can access this process. Sometimes the requirements for changing legal identification, such as a mental health diagnosis or surgical and hormonal interventions, refer only to trans* people and do not apply to intersex individuals.

In most countries, male and female remain the only legal gender categories; for intersex individuals who identify as in between male and female, as both or neither, there is no option that recognizes them. Calls for the creation of “third gender” categories to include intersex people have been controversial. The danger of a third gender category is that, if it is only open to intersex and/or trans* people or made mandatory for them, it will reinforce the exclusion of those who do not fit within the sex binary. Australia provides an example of an opt-in framework: any intersex or gender diverse person can select an “X” gender marker on their passport if they can obtain certification from a doctor or psychologist. Complications remain regarding whether other countries recognize such passports and the possible harassment of those who carry them.

Germany provides a different example: a law passed in 2013 mandates that infants who cannot be assigned to the male or female sex must have the gender entry left blank on their birth certificates. This was hailed inaccurately in the media as a “third gender option.” Rather than a choice made by parents or the concerned individual, the law leaves authority in the hands of doctors. Instead of offering protections, the blank entry may make intersex children more vulnerable to stigma and discrimination. Many intersex activists fear that the law will forcibly out intersex children and increase, rather than reduce, the likelihood of sex assignment surgeries on newborns, because parents will not want their children to lack a legal gender. Until such time that sex is no longer recorded on birth certifications, most intersex activists will continue to advocate for assigning the sex of an intersex infant on the basis of the best information available at the time and allowing for the possibility that the child may identify differently as they grow up.

The Malta Declaration [a statement issued by the Third International Intersex Forum, held in Malta] calls for all adults to be able to amend their sex or gender classification through simple administrative procedures and to be able to choose among female, male, non-binary or multiple options. Ultimately, however, the vision is to remove sex or gender as a category on birth certificates and identification documents, as has been the case with race and religion.

Caster Semenya (Photo courtesy of NewZimbabwe.com)

Caster Semenya (Photo courtesy of NewZimbabwe.com)

When an intersex individual’s legal identity is considered incongruent with their chromosomes, genitalia, reproductive anatomy and/or hormones, they are vulnerable to discrimination. For example, they may face barriers to marriage or the adoption of children, in violation of the right to marry and form a family. Some of the most visible acts of discrimination concern the participation of intersex individuals in sports. Several international sports bodies, including the International Olympic Committee, use sex verification guidelines to determine whether athletes should be banned from competition. The case of Caster Semenya, a champion Olympic runner forced to undergo “gender testing,” received worldwide attention. But there are dozens of other women athletes who have experienced similar violations. Medical journals have documented, for example, the case of four young women athletes whose high levels of testosterone flagged them for medical examination and who were subsequently diagnosed as intersex. All four athletes consented to the medically unnecessary surgeries proposed by the doctors—the partial removal of their clitorises and the removal of their gonads—in order to return to competition.

Lack of Legal Protections and Redress

For the most part, violations of the human rights of intersex people have been hidden from public view. Laws or policies to prevent harmful interventions on intersex children are few and far between, and less than a handful of places offer protections to intersex people. It is often assumed that anti-discrimination protections on the ground of “sex” cover intersex as well, but in these laws, sex is generally equated with gender, not sex characteristics. While protections increasingly specify sexual orientation or gender identity, few include “intersex status” or “sex characteristics.”

This means that intersex people often lack protections or recourse for violations of their human rights. Access to justice and redress remains a major concern. Only a few cases have gone to court to challenge abuses of human rights experienced by intersex people. The Malta Declaration calls for the provision of “adequate acknowledgement of the suffering and injustice caused to intersex people in the past, and provide adequate redress, reparation, access to justice and the right to truth,” and as advocate Arvind Narrain argues, “a future free of discrimination on grounds of intersex status cannot emerge, if the injustices of the past are not fully redressed. The issue of what has been done to intersex infants around the world is one of which raises questions of truth, justice, reparation and guarantees of non-recurrence.” Thanks to the work of intersex activists, processes to promote accountability for past malpractices and reparations for violations are beginning to advance.

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