Pustovit: We don’t have to treat intersex people like exotic animals

October 26 is celebrated as International Intersex Awareness Day. Unfortunately, nearly nobody in Ukraine knows about this day or about intersex people. But intersex people do exist and there are plenty of them. Yet because the topics of sex, sexuality, and especially of people who do not fit into sex binaries are taboo, these people often face ignorance and misunderstanding. In order to better understand the problems that intersex people encounter, Political Critique spoke to Ukrainian intersex activist Julia Pustovit.

Dafna Rachok: Let’s start with definitions. Intersex or hermaphrodite? Though in Ukraine both terms are used, it seems that the term “intersex” is more widespread and appreciated. Moreover, “intersex” seems to be more neutral, doesn’t it?

Julia Pustovit: Well, there is no consensus regarding these definitions. For instance, there are people who call themselves “chromosomniki”, meaning that their bodies have certain chromosomal variations; there are also people who do not want to be intersex but want to be DSD (Disorder of sexual development); and there are people who want to be called intersex and want all others to also be intersex. The term “intersex” is an umbrella term for different biological variations ― anatomical, chromosomal, and hormonal variations. Intersex is an umbrella term. Regarding Ukraine, I think that it is better to adopt the term “intersex”. And not to use the path that Russia chose: there they adapted and translated the DSD diagnosis. I think that the term “intersex” is firstly less traumatic and secondly more informative. It is far easier to answer the question “What is intersex?” by saying that it is a handful of variations in biological, chromosomal, and hormonal components of sex. Moreover, I am convinced that it is better to stop using the term “hermaphrodite”. However, it is very unlikely that Ukrainian doctors will abandon it in the nearest future. But I would really appreciate if Ukrainian media started using the term “intersex”.

What are the main problems that intersex people face in Ukraine?

The main problem is the lack of accessible information in Ukrainian or Russian. Russian and Ukrainian pages on Wikipedia, for instance, are not at all informative. Moreover, the articles about intersex people there contain information that is offensive; these articles also do not have any references to up-to-date research on the topic.
Besides that, there are many other problems. For example, I can’t get medical care. At least, care that does not concern my teeth, hands, or legs. Everything else, especially when I have pain in my internal organs, makes doctors astonished and full of doubts. I frequently hear from them remarks like “What if your internal organs are not placed the way they are in other people?” or “And what if there is something wrong with you internals? We do not even know how to treat you”. I usually ask them to treat me as a man – according to the sex listed in my passport. Though I am deeply convinced that this is not my true sex. My certainty is, by the way, supported by the latest medical research.

Another difficulty is the fact that the doctors are not interested in where I have pain but rather in why I look the way I look. And the discrepancy between my appearance and the sex in my passport makes the situation more difficult. To be honest, I am not sure that after I change my passport these problems will disappear. For some reason the majority of doctors just do not know why I look this way. There were situations when suggested to me a diagnosis of “transsexualism”[1] or even “homosexuality”. Of course, I refused.

Often intersex people lament that doctors offer the parents of an intersex child to surgically modify the child’s genitalia, so that it is easier to ascribe sex to a child. I wonder whether similar practices are widespread in Ukraine and whether parents often agree to “correct” genitalia?

Ukrainian doctors who see an intersex child usually offer to perform a genital surgery. They often treat intersex children as something exotic and peculiar. From talking to people, I have some scant information on the issue. In the majority of cases, toddlers in Ukraine that are born with “underdeveloped genitalia” undergo normalizing surgeries (unfortunately, the same also happens in many other countries and it is not new information). Of course, parents are informed about the surgeries, but you understand the way it is explained to them. The doctors say that this way, in the future it will be easier for both you and your child. Parents do not usually know that their child can live the way it was born and decide who to be later, at a more conscious age, and after being better informed about the biological variations of the body. In Ukraine, doctors push parents into “assigning” sex to a child.

When and how did you decide to become an activist?

When I realized that I am intersex, I started communicating through the Internet with foreign intersex activists. And I found out that there exist different groups and organizations of intersex people and that these groups dedicate themselves to educating people about intersex issues. By contrast, everything is very sad in Ukraine. For instance, some TV channels broadcast talk shows with intersex people. The way these people were treated, the way they were talked about and the comments people left under this video on the Internet – it was horrible. But all these things that I had seen and heard, they made me think that someone has to explain to the general public who intersex people are. Maybe I will be the first but there has to be some who will explain that you don’t have to treat an intersex person like an exotic animal. Those talk shows reminded me of kunstkameras, as intersex people used to be exhibited in these places as something peculiar. Generally speaking, communication with activists from the USA, Australia, and Europe made me realize my desire to do something and to stop sitting on my hands.

This desire to change something was sparked by the understanding that I am alone and that firstly I have to overcome my own fears. Soon, however, I understood that I am not alone and that there are many people who are like me. Despite that, still, there is nobody who wishes to help me with my ideas. I have searched for the allies everywhere. I was rejected by transgender people because I am not transgender. I was rejected by genderqueers. So I started looking for other intersex people. Thanks to a few forums, I realized that there are intersex people, but they are hiding. They often hide behind other labels and identities, it happens because of a lack of knowledge of who intersex people are. They also want to be a part of a certain community and not to be isolated. This is why I want so much to educate Ukrainian society about intersex people, so they will not be alone and they will know that they are equal.

You’ve said that many intersex people in Ukraine are afraid of being recognized as such in public. How did you stop being afraid and how did you decide to speak up?

I realized that I am tired. Doctors undress you, touch your body, show you to their students and the students also touch you; doctors take pictures of you because you are “unusual”… When it happens for the first time, it is frightening, distressing, and painful. But when it happens again and again, then you simply stop feeling anything about this at a certain point. Basically, the same thing happened to my feelings towards people’s reactions to me on the street. Certainly, it is unpleasant even now when people look at me with astonishment. Though now I started to spot people who look at me with a certain interest: they do not have any astonishment or condemnation in their eyes.
As an activist, can you describe your primary aims? Is it just about educating society or do you also have other plans?
Regarding the short-term perspective, I have almost prepared an informational brochure about intersex people. It is in Russian. It says that we are no freaks and we are not sick people, we are just like anyone else but a little different. Another project is a brochure for parents of intersex children. One of my main ideas is to create an Internet website where everyone would be able to find the information s/he is looking for. In addition to that, I also want to cooperate with lawyers and psychologists who can help me to offer professional assistance and support to intersex people, intersex children, and parents of intersex children. Unfortunately, it is often parents who are to blame for the problems of intersex children – as they were educated with respect to traditional values and they have no idea about this phenomenon.

Certainly, there is also a long-term perspective. But it is hard to talk about it since I am still doing it all by myself. There are very few sympathizers. But I have a lot of ideas. For instance, I would love to influence medical universities and to make the professors talk about intersex people in their lectures. I would also love to organize study trips for Ukrainian doctors, so they can learn about intersex people and what kind of medical treatment they might need. The thing is that many intersex people do not need a cure but they need medical care. I can’t get medical care for a year already: I can get it in neither public nor private hospitals. In private hospitals I am told that there are no doctors who can help me and in public hospitals they just refuse to help me.

Another plan for the long term is to lobby for changes in legislation. Though beforehand, it is also necessary to upgrade Ukrainian lawyers and to send them abroad, for example to Germany or Australia, to the countries where intersex people are not ignored by legislation. In Ukraine we really need a law or another regulatory document that would oblige hospitals to provide intersex people with medical care. But in the short term, I will focus on educating society with the help of printed materials and information on the Internet. I think I will also work with the media more.

There is a tendency to add more letters to the LGBT abbreviation. For example, people add the letter “I” – intersex people. What do you think about that: is it worth having LGBTIQ, etc. or is it better to leave it as it is and stop adding letters?

I am against adding “I” to LGBT. On the one hand, in order to have a voice and to make oneself known, it is really easier to walk hand-in-hand with someone who is already known. We can be allies with LGBT, but as a separate part of something bigger. The level of tolerance towards LGBT people in Ukrainian, Russian, and many other societies could be better, to put it softly. So I think it we would be somehow getting ahead of ourselves to add “I” to LGBT. Especially in Russia where all LGBT people are outside the law or in Ukraine. Not everybody in Ukraine and Russia understands the difference between sexual orientation and gender identity, so to add to this abbreviation also biologically variated people means to confuse society even more – the brains of some people would just explode. Thus I am rather against this juncture. Moreover, in Ukraine even LGBT organizations don’t always understand who intersex people are.

[easy-tweet tweet=”I have the impression that we are one of the few post-Soviet countries where intersex people are not recognized. It’s like I exist but I don’t. ” user=”@krytyka” usehashtags=”no”]

Is it possible to summarize public opinion in Ukraine regarding intersex people? Is everything that bad? And if you compare Ukraine to other post-Soviet countries, is the situation better or rather worse?

There just is no public opinion about intersex people. Try and ask a person on the street who intersex people are. I bet they don’t know. Of course you can ask who hermaphrodites are. In this case, I think every second person will be able to answer. However, it is very probable that this person will say that hermaphrodites are people who have both male and female genitalia. The film industry and the Internet are to blame here. And regarding medicine, you can say that doctors’ knowledge on the issues is sterile. In contrast, in Russia I was offered medical care for pain in the underbelly. As far as I know, Russia acknowledges the existence of intersex people, though they are attributed DSD diagnosis. I have the impression that we are one of the few post-Soviet countries where intersex people are not recognized. It’s like I exist but I don’t. When someone needs to invite me to participate in a strange TV-show, I exist. If I want the government to legally recognize me and to provide me with assistance, I don’t exist.

In Australia intersex people have the possibility of being issued a passport with an “X” in the sex category instead of usual the male/female. What do you think of this idea? Is it worth demanding something similar in Ukraine?

I support this idea but it is critical support. Because before you approve something like this in your country, it is necessary to adopt it on a broader level, for instance, to implement such a thing on the all-European level or on the level of the UN. Let’s look at this situation more closely. For example, a person was issued a passport in Australia with an “X” in the column for sex wants to visit some other country. Here’s where the problems start. For instance, this person needs a visa to go to another country but in the visa application form, there is no “X” in column for sex, only the usual M and F. And this person is not M or F, this person is “X”. What should they do? This is why I think that without approving such a thing on the level of the UN or something like that, this “X” column is not really useful. However, if there was such an opportunity in Ukraine, I would go for it and ask for an “X” in my ID. But I would then still ask for M/F in my international passport.

I have lived a great part of my life with documents where it is stated that I am male. It was before I started to realize my otherness. And now with the help of my lawyer I am seeking permission from the court to change my sex in my documents. When I was a child, I underwent surgery. The doctors said that it was a removal of diverticulum of the bladder. It is interesting enough that neither before nor after the surgery did the doctors identify that I have a lot of endocrine and genetic differences from other kids. Moreover, I was already an adult when the doctors found out that my internal and external genitalia are different than usual.

My court case is a precedent. It does not make the situation easier. If the needs of transgender people are to some extent legally recognized, there is not a single word about intersex people in Ukrainian legislation. So, when I applied to a registry office and asked to make a change in the related documents regarding my sex, they refused to and said that I didn’t undergo the procedure mandatory for transgender people. You see, they know about transgender people but they know nothing about intersex people. So, they are trying to explain my case to themselves through something already known. But I am not transgender. And the sex change procedure for intersex people is not regulated at all, so I had to go to court. One of the main problems intersex people face is that they are not recognized by the state. Intersex people do exist and there are many of them. I wish for all of them to find their true self and to not be afraid.

 

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Notes:
[1] According to the Ministry of Health of Ukraine Order №60, a person’s desire for a sex change has to be proven by a medical diagnosis of “transsexualism” that is issued by a special Commission. Unfortunately, in order to have this diagnosis, a person is forced to undergo a series of unnecessary and humiliating procedures.