#you can also find this post as one of our pages at intersex.support.tumblr.com/faq

[intersex-support]

Intersex Support FAQ

1. What is intersex?

Intersex is an umbrella term that describes people who have variations in sex characteristics that fall outside of the sex binary. This includes variations in genitals, internal reproductive organs like testes and ovaries, chromosomes, secondary sex characteristics, and/or the way that your body produces or responds to hormones. Some examples of intersex variations include AIS, CAH, PCOS, Klinefelters, hypospadias, and more. 

The three main factors that define intersex variations are: 

Variation in sex characteristics 

The variation falls outside of the sex binary and is different from what is considered typical “male” or “female” development. These variations in traits might often be stigmatized and discriminated against for being outside of the sex binary.

This variation is either present from birth or develops spontaneously later in life. It is not caused by transitioning or by something temporary like a medication side effect, tumor, or other medical diagnosis. 

(This definition is inspired by InterACT).

2. Does ____ count as intersex? 

There are around 40 different intersex variations that are currently known. InterACT”s intersex variation glossary lists out those intersex variations and gives a brief description of each one.

However, we know that isn’t a complete list. People have intersex variations that haven’t been medically researched yet, or might have a rare variation that the intersex community isn’t aware of yet. 

There are also some variations that might seem on the border between perisex and intersex. Some types of hormonal or reproductive diagnoses might not have a clear answer on whether they’re intersex or not. 

Ultimately,  intersex is a social/political identity rather than a strictly medical one. Increased research and changing social attitudes can cause the definition of intersex to expand over time. Regardless of whether someone has a confirmed intersex variation or an “intersex adjacent” diagnosis, if intersex resources are helpful to you, we hope that you continue to use them and act in solidarity with the intersex community. 

On this blog, we do include PCOS with hyperandrogenism as part of the intersex community. Check out our PCOS tag for more posts about our reasoning, and PCOS specific resources.

3. Am I intersex?

We cannot diagnose you with an intersex variation over the internet. We can share resources such as the intersex variations glossary, share tips for navigating the medical system, and share information on other non-clinical signs of being intersex. 

Some questions to ask yourself that can help you start the process of intersex discovery:

What do my sex traits (genitalia, secondary sex characteristics, hormone levels, etc) look like? Does this seem like it lines up with the “typical” descriptions of those sex traits? 

Do I have any information about my birth? Were there any complications? Did doctors do extra testing at birth? Did doctors take me away from my parents for long periods of time? Did it take me longer to have my sex assigned at birth?

What was puberty like for me? Did I have early or late puberty? Did I have to go on hormones to start puberty? Did I have any variations in puberty, such as unexpected breast growth, irregular periods, or other changes? Did I go through puberty at all?

If you’ve tried to have children, are you infertile or struggling with fertility?

Did I have any unexplained surgeries or medical procedures as a child? Was I ever told I had to have organs removed and was told it was because of a cancer risk? Did I have to be on specific medications or hormones throughout my childhood? Did I have to go see a doctor more frequently? Did I go to an endocrinologist or pediatric urologist as a child? 

Do I have surgery scars or scar tissue? Do I have more frequent UTIs than typical?

Do I have access to my medical records? Is there records of hormone panels, ultrasounds, physical exams, surgeries, or other medical procedures? 

This kind of information can help you start to piece together if you think you might have an intersex variation, or if you think your intersex variation was hidden from you. 

If you’re sending in an ask trying to figure out if your symptoms line up with a specific intersex variation, please share as much information as you’re comfortable with so that we can answer with the most helpful resources. 

4. Can I self diagnose as intersex? 

It’s complicated! Intersex is different from other LGBTQIA identities, in that it’s not only about self determination, but also about our embodied experience in a very specific way. In order to be intersex, you have to have an intersex variation. And there are many intersex variations that can only be confirmed through medical testing, so it’s not something that is easy to self-diagnose.

However, we recognize that the medical system is expensive, discriminatory, and often actively hides information about people’s intersex variations from them. (it wasn’t even until 2006 that the AAP stopped recommending that doctors lie to their patients about intersex status, so many intersex adults were born before that policy change!) Considering all that we know about intersex oppression, curative violence, and medical abuse, it feels incredibly cruel to tell people that they have to force themself through that system in order to seek answers. 

So, we understand that there are ways of finding out that you are intersex without having a specific, confirmed, medical diagnosis. Many of us might find out that we’re intersex because we realize that our genitalia visibly looks different, and we can tell that we are intersex, even if we don’t know our specific diagnosis. Others might find out that we’re intersex because of strange discrepancies in our medical record. We might find out through discovering surgery scars on our body. We might go through puberty and realize that we’re developing in an atypical way to our peers. We might do a lot of research into intersex variations and have a pretty good guess into what variation lines up with our experiences. We might have some test results that help us understand we have intersex traits, even if we don’t know our specific diagnosis.  

Before self diagnosing, we think it’s important to do thorough research into intersex variations, so that you truly understand what intersex means, what intersex variations exist, and understand how that information applies to yourself. It’s also important to be considerate of how we interact in community spaces, and respect other intersex people's boundaries as you engage in a questioning or diagnosis process. 

5.  Are intersex people trans?

Some intersex people are trans, and some aren’t. Most intersex people are still assigned a gender at birth, and many intersex people who are raised as one gender and then later identify as another gender identify with the label trans. Intersex people can be cis or trans just like any other group of people. 

Many intersex people have complicated relationships with gender, and don’t feel like labels like cis or trans really fit their experiences. For this reason, terms like intergender and ipsogender were coined.

6. Are intersex people LGBTQIA?

It’s complicated! The “I” in LGBTQIA stands for intersex. Intersex history is intertwined with other parts of queer history. For example, the very first protest for intersex people in the United States was organized by Hermaphrodites with Attitude and Transexual Menace. There are intersex inclusive versions of community pride flags. Many intersex people view their intersex identity as a queer identity. Intersex oppression overlaps in many ways with homophobia and transphobia. 

However, not all intersex people think that intersex should be included in the LGBTQIA community. Sometimes this is for bigoted reasons, with intersex radfems who use this stance as a way to be transphobic. But there are also intersex people who think that the “I” should only be included in the acronym when intersex people are actually meaningfully being included in queer spaces and resources. Many of us feel frustrated when people put “LGBTQIA” on a resource but then don’t actually have any intersex specific information in those resources. 

In general, this is an ongoing intracommunity discussion where we don’t have a consensus. 

7. Are intersex people disabled? 

It’s complicated! Intersex is an umbrella term for many different experiences, and there is not one universal intersex experience. Some intersex people identify as disabled. Some intersex people do not.

Many intersex variations do cause disabling impacts in our bodies and lives. Some intersex variations are comorbid with other health conditions. Other intersex people become disabled because of violent normalizing interventions we’ve survived, such as forced surgery or other types of medical abuse. 

Intersex people are also impacted by many of the same structures of oppression that harm disabled people. Both intersex people and disabled people are harmed by ableism. Both intersex people and disabled people are harmed by pathologization. Both intersex people and disabled people are harmed by curative violence. 

In the book Cripping Intersex, Celeste Orr explores all these concepts and creates something called “intersex is/and/as/with disability,” which is a model to think about all these different and sometimes conflicting relationships with disability. Some intersex people might identify directly as disabled. Others might sometimes think about the way that intersex is treated as a disability. Other intersex people might think about intersex and disability as a way to have solidarity. All of these relationships with disability are meaningful parts of the intersex community. 

8. What is intersex oppression/intersexism/interphobia/compulsory dyadism? 

Intersex people face a lot of oppression in many ways in society. At the core, intersex oppression relies on the idea that the only acceptable sex traits are sex traits that fit into the sex binary. Intersex oppression relies on mythical ideas of the “ideal male or female” body, where someone's chromosomes perfectly line up with their genitalia and internal reproductive organs, with perfectly normal hormone levels and perfect secondary sex characteristics that don’t have any variation. When people don’t fit into that “perfect” sex binary, they are seen as less valuable, abnormal, and threatening. There is then a societal pressure to eradicate any traits and people that fall outside of the sex binary, which causes a lot of targeted discrimination of intersex people. This form of oppression is called “compulsory dyadism,” and was coined by Celeste Orr. 

Compulsory dyadism is also rooted in, overlaps with, and is the foundation for many other types of oppression. For example, ableism is another form of oppression that creates ways of harming people whose bodies and minds are labeled as less valuable for societally constructed reasons. Check out Talila Lewis’s definition of ableism for more information. Another example is how racialized people are targeted by sex testing policies in sports--both intersex and perisex women of color are consistently targeted by sex testing policies designed to exclude intersex people from sports. Another example is that homophobia and transphobia contribute to why intersex bodies are seen as threats that need to be eradicated--society views existing with intersex sex traits as a slippery slope to growing up as a gay or trans adult. Compulsory dyadism is also at the root of a lot of transphobic rhetoric about how transitioning “ruins” people’s bodies. All these forms of oppression are connected. 

There are a lot of ways that compulsory dyadism causes intersex people to be targeted and discriminated against. A huge issue is nonconsensual surgeries at birth, that attempt to “normalize” ambiguous genitalia, remove intersex people’s gonads, and otherwise alter genitalia or internal structures. These surgeries are often referred to as intersex genital mutilation, or IGM. These surgeries do not have any medical necessity, but doctors lobby to continue to be allowed to perform them anyway. These surgeries can sterilize intersex people, cause lifelong trauma, and also cause many disabling medical complications. Alongside IGM, intersex people also face a lot of different types of medical abuse. 

Besides curative violence and medical abuse, intersex people also face discrimination in our schools, jobs, and public places. We face legal discrimination in changing our names and sex markers. We face discrimination from institutions like CPS, which often target parents, especially people of color, that refuse to put their children through intersex genital mutilation. Many intersex people survive targeted sexual violence. We have a widespread lack of resources, visibility, and representation. Many people still have prejudiced ideas about intersex people and call us slurs. These are just a few examples of the many way that interphobia/intersexism show up in our lives. 

9. What is intersex justice? 

Intersex justice is a framework created by intersex activists through the Intersex Justice Project as a way to fight for intersex liberation. 

“Intersex justice is a decolonizing framework that affirms the labor of intersex people of color fighting for change across social justice movements. By definition, intersex justice affirms bodily integrity and bodily autonomy as the practice of liberation. Intersex justice is intrinsically tied to justice movements that center race, ability, gender identity & expression, migrant status, and access to sexual & reproductive healthcare. Intersex justice articulates a commitment to these movements as central to its intersectional analysis and praxis. Intersex justice acknowledges the trauma caused by medically unnecessary and nonconsensual cosmetic genital surgeries and addresses the culture of shame, silence and stigma surrounding intersex variations that perpetuate further harm.

The marginalization of intersex people is rooted in colonization and white supremacy. Colonization created a taxonomy of human bodies that privileged typical white male and female bodies, prescribing a gender binary that would ultimately harm atypical black and indigenous bodies. As part of a liberation movement, intersex activists challenge not only the medical establishment, which is often the initial site of harm, but also governments, institutions, legal structures, and sociocultural norms that exclude intersex people. Intersex people should be allowed complete and uninhibited access to obtaining identity documents, exercising their birth and adoption rights, receiving unbiased healthcare, and securing education and employment opportunities that are free from harm and harassment.” (Source: Dr. Mel Michelle Lewis through the Intersex Justice Project.)

There are seven principles to intersex justice: 

Informed consent

Reparations

Legal protections

Accountability

Language

Children's rights

Patient-centered healthcare

10. What is intergender? 

Intergender is a gender identity for use by intersex people only. It doesn’t have one specific definition-it is used by intersex people to mean a whole variety of things. It’s used to describe the unique ways our intersex experience intersects with and influences our gender.  Some people use it as a modifying term, such as calling themselves an intergender man or woman, as a way to explain the way being intersex affects their identity. Other people identify solely as intergender, and have that be their whole gender. 

11. What is dyadic/perisex/endosex? 

All are words that mean “not intersex.” Different groups will have different preferences on which one they like to use. 

12. Is hermaphrodite an offensive term? 

Yes. It is an incredibly offensive slur that perisex people should never say. Many intersex people have a very painful history with the slur. Some of us reclaim the term, which can be an important act of healing and celebration for us.

12. Can perisex people follow? 

Feel free, but understand that questions by intersex people are prioritized! Anyone is welcome to follow.

13. I’m writing a character who’s intersex…

Check out this post:  https://trans-axolotl.tumblr.com/post/188153640308/intersex-representation. If you’re writing about intersex people for a paid project, you should pay an intersex person to act as a sensitivity reader before publishing. 

Check out our Resources and Intersex Organizations pages as well!