Intersex Day

Laura Inter. Photo: Morgan Carpenter, 13th AWID International Forum.

Medical protocols still include genital mutilation, and these practices are justified as necessary to “normalize” genital appearance and so avoid problems in social interactions. These surgeries irreversibly alter healthy tissues and organs, or gonads are removed without evidence of disease, leading to sterilization. They are carried out on young infants, children, adolescents and youth. Medical procedures imply regular genital examination in childhood, in the presence of several doctors, and also photography of the body or body parts, without proper informed consent. Psychological treatments are also common. The consequences of genital insensitivity or recurrent infections, frequently reported by people in adulthood, are not studied.

I started Brújula Intersexual (Intersex Compass) in 2013, and it has since opened up discussion about the rights of Mexican intersex people to bodily integrity, physical autonomy and self-determination. We approached some doctors, but we have usually found that they have little willingness to listen, and they do not agree that intersex itself is not a disease. Very few doctors see intersex from a different point of view. In Brújula Intersexual, we have support from just one doctor who does not see intersex as a pathology, and he provides medical guidance with dignity, and free from discrimination. Unfortunately he is still the only doctor who supports us, and many intersex people do not have the resources to travel to see him.

So, in Mexico we lack trained and sensitized medical specialists who can provide dignified and efficient care. This happens even when adult intersex people have intact bodies, without having been subjected to surgery in childhood. We know people who have been to a doctor for some issue unrelated to an intersex variation, who have been questioned about their physical appearance, with hormonal treatments recommended to “normalize” appearance. If gynecological attention is required, these specialists usually don’t know about genital differences that may exist in intersex bodies. They do not know exactly how to treat intact bodies, and do not have medical instruments adapted to intersex bodies with genitals that vary from male or female averages. What is very common is that, although the consultation is for a specific different reason, they recommend or indicate genital surgery or hormone treatments to “normalize” appearance. This is what we hear:

“… I have a urethra and vagina in the same urogenital duct … I went to the gynecologist and had general anesthetic. After I found out they had entered me with a device used only for women with a typical vagina. I tore, I bled a lot. For days it was very painful to walk and sit, I felt that I had been raped.”

“[Even when I visit for other health reasons, doctors] end up asking inappropriate things because of their prejudices about my appearance, things like, what is your sexual preference?, when are you going to decide? (Referring to my gender) Why not take female hormones or go to an endocrinologist?”

In Mexico, and across Latin America more generally, most intersex people, aged over 20 years and who have had contact with hospitals and diagnoses have “female pseudo-hermaphrodite,” “male pseudo-hermaphrodite” or “true hermaphrodite” in their medical records. Because of this, many intersex people are familiar with those terms, and not with the word “intersex”. When looking for information about their physical variations, they find information that is poorly understandable and pathologizing. When looking for those terms, medical information usually reinforces the discomfort they associate with adverse social experiences related to their bodies.

Currently, as elsewhere in the world, medical centers have adopted the new post-2006 “Disorders of Sex Development” nomenclature. I’ve still not met any intersex person in Mexico that uses this terminology to describe their intersex variation, nor any that have heard it from their doctors. I know that it has begun to be used in Mexico through discussions I’ve had with parents of intersex babies, and with medical students and some academics.

In Brújula Intersexual, we’ve taken a stand against both previous and new clinical nomenclatures. The terms ‘hermaphroditism’ or ‘hermaphrodite’ were used as a medical diagnosis and are still used in news stories and by some public servants. Hermaphrodite is a misnomer, lending itself to misunderstandings. People often get confused and think that refers to those who have “two sexes”; two sets of reproductive organs, one male and one female, which is impossible in a human being. The term “disorders of sex development” or DSD is clearly pathologizing term because it designates intersex traits as a disease, and this perpetuates belief in the necessity of “normalizing” genital surgeries and hormonal treatments.

Today, as in other countries, some doctors in Mexico have chosen to tell parents of babies with XX chromosomes and congenital adrenal hyperplasia, born with atypical sex characteristics, that their daughters are not intersex. I think the objective is so that parents do not search the internet for the term “intersex” and so are not exposed to information produced by intersex activists. Lack of knowledge about intersex, and the pathologizing way that doctors present this situation to parents, troubles parents and influences them to take hasty decisions, accessing treatments offering to them by doctors.

Mexico is a country with great economic and social inequalities, and I have found cases where doctors treat people according to their social and economic status. When parents of intersex children have low economic or social status and attend health services, it is common that they would not be told about their child’s intersex variation, or they would be told partial information, or simply lies. Surgical and other medical procedures might be performed without informing parents exactly what they are doing to their child. For that reason, Brújula Intersexual has spaces where parents can come and air their concerns about specific intersex variations, particularly congenital adrenal hyperplasia, as we think it may be the most common intersex variation in Mexico.

Differential medical treatment based on economic or social status also happens to adults. For example, last year in a radio program, a geneticist talked about the case of a lady, aged 35, who complained of pain during sex with her husband. Because she had never menstruated, he conducted medical tests that detected internal testes and XY chromosomes. This led to a diagnosis of androgen insensitivity syndrome. According to the geneticist, this person lived in a remote community and her husband was “just a farmer”, so, for those reasons, he decided not to inform the woman of her intersex variation, as she “would not understand” – even though he recognized that the lady was at risk because she was unaware of her intersex trait.

It seems to me that the right thing is always inform the person. It is never valid to hide information; the doctor’s job is to explain to the person as many times as necessary, in a way that helps an individual understand their intersex variation as it is, something natural. The individual can decide who would share that information with. We were interviewed for the radio program as well, but we weren’t aware of the geneticist’s stance at the time.

Such situations and medical ill-treatment of people with low economic or social status is extremely common in Mexico, and affects not only intersex people but also the general population.

Laura Inter. Photo: Morgan Carpenter.

With high rates of poverty, the health system also suffers, and not everyone can access it. The quality of care is unequal and many people with intersex bodies, unlike in northern countries, have not had interventions in hospital and so retain their physical integrity. Many areas of the country do not have hospitals, and births occur in homes. Other communities have rudimentary clinics without the necessary resources or medical specialists. In these circumstances, after the birth of an intersex baby with no obvious health problems, the family is simply sent home, hoping for the best, without much explanation.

Having an intact intersex body does not automatically imply a sense of well-being. Bodily changes arouse social cruelty, disgust and derision. Many intersex people can be subjected to discrimination and violence when their intersex variation is known. Violence may arise in their family or with their partner, who can force them or harass them to undergo “normalizing” interventions. We have also found cases of discrimination in schools or workplaces. All this can pressure or force an intact intersex person, who in other circumstances would keep their body with intact intersex features, to undergo irreversible surgery that can cause health problems. Often people in this situation regret the interventions, because of the problems associated with interventions, but also because this does not solve the problem of stigma, discrimination and social violence. These interventions only create more conflicts and problems in the lives of many intersex people.

This violence and discrimination comes from ignorance, lack of information, and the solution is not to modify and mutilate healthy bodies, but to educate the minds of people who discriminate against anyone who does not conform to sex standards. Our goal is to generate social awareness about intersex issues and the rights of intersex people, and end this atmosphere of ignorance and misinformation.

I’ve met intersex people from Mexico, and other parts of Latin America, whose bodies have not suffered interventions. Their intersex traits and physical genital differences do not necessarily cause health problems. For example, I was born with ambiguous genitalia and the doctors told me that my type of genitals is prone to vaginal infections, because the urethra and vagina join. The reality is that I only suffered a slight vaginal infection that happened more than ten years ago, and beyond that I’ve not had any problems. Other intersex people who have not been subjected to interventions, who have a corporeality similar to mine, have confirmed the same: their intact bodies have not brought them any health problems. Health problems are usually related to metabolic imbalances but, of all intersex people I’ve spoken with, only a really small percentage have such difficulties. Clearly these situations are not so closely related to having intersex genitals, nor other secondary sex characteristics that vary from norms. I also know people with intersex traits in Mexico, who have never had surgery, or even who have never gone to the doctor and have never received a diagnosis, and they lead healthy lives.

Many people, both those who have undergone surgery and those that have not, reach Brújula Intersexual. Approaching the project allows them contact information without pathologising their bodies, but even celebrating them. Gaining self-esteem, people begin to realize that the problem is not their bodies, but ignorance and discrimination. This information helps people see their bodies differently, for example, they are able to explain their intersex traits to any sexual partners in non-pathologizing ways, in ways that celebrate their difference. In addition if they want to explain their intersex traits to friends or family, they can overcome the medical explanation and talk about their bodies as they are, natural variations in human corporeality. These people accept the situation in a healthy way, not as something “bad” but as something natural. It is interesting to see how we build our self-esteem influenced by the opinions of others. Realizing that the problem is not our intersex bodies but widespread ignorance and misinformation, we heal.

Paloma, shared her story with Brújula Intersexual, as an intersex woman who avoided surgery and retains her intact body. She says:

“Now I like my body, I enjoy it, I’m aware of the potential it has, and I can do and enjoy things with my partner that would not be possible if I were a woman with a typical body. I will never again think about changing the body I have. I can now say I prefer to have the intersex body I was born with, rather than being born with a body considered ‘normal’.”

Doctors think that people with different bodies will be unhappy and miserable human beings, then come to the conclusion that interventions do us favors, giving us the key to happiness, even sexual happiness. Nothing could be more inaccurate or further from the reality than this way of thinking. As Gabriel J Martin, born with intersex traits, wrote: “there are many more things in sexuality than penetration”.

There are many people who do not fit the typical description of what a man or a woman should be. We know it’s not easy to feel we do not fit in, but what matters is that we let people grow up and decide for ourselves. Intersex children growing up may find, like me, that there is nothing wrong with being different, that sexuality can be experienced in different ways. Penetration and pleasure are not the same thing, an intersex body invites the imagination to explore new erotic possibilities. Gender binary norms are disarmed in bed, not in operating theatres. All of us, no matter the bodies we have, can experience more than the typically performed sexual intercourse that is repeated again and again on the screens of cinema, in pornography and in soap operas.

The medicalization and stigmatization of intersex people is not recognized, and this causes significant trauma and health problems. Despite all the injustices and human rights violations perpetrated against the intersex people, there is no known case, in which a person has sued a medical institution or their doctors, to obtain compensation for damages they incurred as a child. This may be due to a lack of non-pathologizing information on intersex, and widespread mistrust in the poor and corrupt Mexican legal system. There are no clear paths to justice, for example, to defend the right to the truth, nor paths to seek compensation or reparation.

I know of a case where ‘Juan Carlos’, an intersex person, sued his doctors in Chile and the hospital in which he was assigned female and “feminizing” surgery was performed, in which they removed his testicles. It was medically unnecessary surgery. He gained compensation.

The law in Mexico generally doesn’t mention intersex people, and when a mention of intersex happens, it is ignorant, without prior consultation about what intersex people have to say. Often intersex is mentioned as a political banner; the purpose is ad not to really help intersex people, it doesn’t even take us into account or hear us. The problems we face are ignored, and reforms or bills attempted to “solve” problems unrelated to the lived experience of intersex people.

Some intersex people do not identify with sex assigned at birth. Sex or gender should not be legally relevant categories, yet they continue to appear on the birth certificates and official identification documents. In most states in Mexico, the procedures to change sex or gender in official documents are very time-consuming and laborious. The exception is in Mexico City, where a 2014 legal reform means that a change of sex or gender can now be ordered as an administrative formality. We hope that this action is repeated soon throughout the country.

Most LGBTI associations in Mexico believe that the main problem of intersex people is assignment of a binary gender at birth, and believe that the solution is to add a third box on birth certificates and register intersex children in this third category. In Brújula Intersexual we think that this measure would create discrimination against intersex children; possibly it would cause parents and physicians to hasten surgeries and “normalizing” hormonal treatments in order to be able to register children in one of the two binary genders. If there is to be any third box for sex on official documents, it should be used only on request, regardless of the body you have.

I imagine a utopian society in which the sex classification on birth certificates and other official documents is eliminated. This would avoid many legal problems for many people, not just the intersex. Unfortunately, we do not yet live in that society, and such a change could take years. Our society tends to discriminate against those they do not understand or those who are “different”, so I think that for the moment that intersex babies can be assigned as boys or girls. This will help them grow without being marked, without carrying a stigma – but this does not mean that their bodies need irreversible interventions. When they grow older, they should have the opportunity to choose whether or not to undergo surgery, and have the ability to choose the gender they want to belong to.

– by Laura Inter, founder and manager of Brújula Intersexual (Intersex Compass)