Information Center | Intersex India

Introductions

What is Intersex?

Intersex is a term that describes a range of natural variations in human sex characteristics. These variations can include differences in chromosomes, gonads, genitalia, or hormone levels that do not fit typical definitions of male or female. Intersex variations occur in approximately 1 in 1,500 to 1 in 2,000 live births.

Imagine that people are like a big puzzle, and each puzzle piece is unique and special. Intersex is when someone's puzzle pieces don't fit exactly into what we usually think of as "boy" or "girl" pieces.

Sometimes, our bodies might have some parts that are a little different. Just like how some people different colored eyes or hair, some people might have bodies that are a bit different when it comes to things like private parts, chromosomes, or hormones.

Just like every puzzle piece is important to complete the puzzle, every person is important in our big world. Everyone deserves love, respect, and the chance to be themselves. Being intersex is okay—it's just one more way that people can be different and amazing!

If you're an intersex child or a parent, know that you're not alone. There are people who care about you and want to help. If you'd like to know more or have questions, you can reach out to us. We're here to listen and support you. Feel free to ask questions and learn more, so you can feel confident and happy just the way you are.

What does Intersex Variation mean?

Let's talk about something called "intersex variations" and how they might make private parts a bit different from what you might expect. Intersex variations are more common than one might think. In India and around the world, intersex individuals exist within every community and culture.

For example, a child may be born with body parts that are a mix of both "boy" and "girl" parts. Or they might have parts that look a bit different from what most people have. Just like all our fingers are not the same, no two bodies are exactly the same either. It's like having a unique combination of puzzle pieces!

Intersex variations are sometimes referred to using different terms, which can vary based on cultural, medical, or advocacy perspectives. Here are some alternative terms or related concepts:

Differences of Sex Development (DSD): This term is often used in medical contexts to describe intersex variations. It acknowledges the natural diversity of sex development.

Variations of Sex Characteristics (VSC): Similar to DSD, this term is employed to emphasize the diversity of sex characteristics among individuals.

Disorders of Sex Development (DSD): While previously used, this term has faced criticism for pathologizing intersex variations and is now less commonly used in favor of more neutral terms like "Differences of Sex Development."

Intersex Variations:

Androgen Insensitivity Syndrome (AIS): In AIS, individuals with XY chromosomes (typically male) have bodies that do not respond fully or partially to testosterone. As a result, they may have female external genitalia but male internal reproductive organs.

This condition highlights how hormone response affects the development of the genitalia and reproductive system.

Congenital Adrenal Hyperplasia (CAH): CAH is a condition where there is an excess of androgens (male hormones) in the body, typically due to an enzyme deficiency. In females with CAH, the excess androgens can lead to the development of more male-typical genitalia.

Turner Syndrome: Individuals with Turner syndrome typically have one X chromosome (XO) instead of the usual two (XX). This can lead to various physical and developmental differences.

Klinefelter Syndrome: Individuals with Klinefelter syndrome have XXY chromosomes, which may lead to differences in physical development and reproductive function. Individuals with XXY chromosomes might have characteristics of both males and females.

XXYY Syndrome: This condition involves having an extra X and Y chromosome (XXYY), which can lead to a variety of developmental and physical differences.

Triple X Syndrome: Also known as Trisomy X, individuals with this variation have three X chromosomes (XXX), which might lead to physical and developmental differences.

Hypospadias: This condition involves the opening of the urethra being located on the underside of the penis instead of the tip.

Ambiguous Genitalia: Some individuals might have genitalia that is not clearly distinguishable as typically male or female.

Mixed Gonadal Dysgenesis: This condition involves having both ovarian and testicular tissue in the same individual, leading to differences in physical and reproductive development.

Mosaic Variations: Some individuals might have a mix of different chromosomal patterns in their cells, leading to a range of physical and developmental characteristics.

It's important to approach intersex conditions with respect and understanding. Each person's experience is unique, and the focus should always be on providing support, care, and respect for their individual needs and identity.

If you have questions or concerns about intersex conditions, it's a good idea to consult medical professionals who are knowledgeable about these variations.

Myths & Facts

Myths and misconceptions about intersex variations persist not only in India but also around the world. These myths often stem from a lack of understanding and awareness about intersexuality. It's crucial to dispel these myths to foster understanding and acceptance.

Here are some common myths:

Myth: Intersexuality is a disorder

Fact: Intersex variations are not disorders. They are natural variations of human biology, just like the diversity of eye colors or hair types. Intersex individuals are as healthy and capable as anyone else.

Myth: Intersex individuals are rare

Fact: Intersex variations are not as rare as many believe. Depending on the specific variation, they can occur in approximately 1 in 1,500 to 1 in 2,000 live births. This means there are many intersex individuals in India and worldwide.

Myth: All Intersex individuals are the same

Fact: Intersex is an umbrella term that covers a wide range of variations. There is no one-size-fits-all description. Intersex individuals can have different chromosomal, gonadal, or anatomical variations, and their experiences are unique.

Myth 4: Surgery is the best solution

Fact: In the past, there was a belief that performing surgery on intersex infants to make their bodies conform to typical male or female appearance was the best approach. However, many intersex individuals, medical professionals, and human rights advocates now argue against non-consensual surgeries. Surgery should be a personal choice made when the individual is old enough to understand and give informed consent.

Myth: Intersexuality is a result of sin or bad luck

Fact: Intersex variations are not punishments or a result of wrongdoing. They are a natural part of human diversity and have existed throughout history.

Myth 6: Intersex individuals cannot have healthy relationships or families

Fact: Intersex individuals are fully capable of having healthy and fulfilling relationships and families. Their intersex status does not determine their ability to love, care for others, or be loved.

Myth: Intersex individuals are not "Real" men or women

Fact: Sex and Gender are not the same. While “Sex” is biological characteristics, Gender identity is a deeply personal experience. Intersex individuals can identify as men, women, both, neither, or in other ways. Their gender identity is valid and should be respected.

Myth: Intersexuality is a choice

Fact: Intersexuality is not a choice. It is a naturally occurring variation, and intersex individuals should not be blamed or stigmatized for how they were born.

Myth: Intersex Variations are a recent phenomenon

Fact: Intersex variations have always existed. What has changed is our understanding and awareness of them. Many intersex individuals throughout history may not have had the language or support to openly discuss their experiences.

Myth: Intersex individuals are inherently confused about their gender

Fact: Intersex individuals, like anyone else, can have a clear and stable gender identity. Gender identity is a deeply personal experience, and it is not determined by one's physical characteristics.

Myth: Intersex Variations are a result of a parent's actions during pregnancy

Fact: Intersex variations are not caused by anything a parent did or didn't do during pregnancy. They are natural variations of human biology.

Myth: Intersex individuals are asexual or sexually dysfunctional

Fact: Intersex individuals can have healthy sexual and romantic relationships. Their sexual orientation and functionality vary, just as in the broader population.

Myth: Intersexuality can be "Fixed" through medical treatments

Fact: Intersex variations are not medical conditions to be "fixed." Medical interventions should be performed only when they are necessary to address health issues and should always be based on informed consent.

Myth: Intersex individuals are sterile

Fact: Not all intersex individuals are sterile. Some can have biological children, while others may require medical assistance to conceive, just like some non-intersex individuals.

Myth: Intersexuality is a Western concept

Fact: Intersexuality is not limited to Western countries. Intersex individuals and variations exist in diverse cultures and regions around the world.

Myth: Intersex individuals must disclose their status to others

Fact: Whether or not to disclose one's intersex status is a personal decision. No one is obligated to reveal this information unless they choose to do so.

Myth: Intersex Variations are just about physical characteristics

Fact: Intersex variations can impact physical, psychological, and emotional well-being. Support should encompass not only physical aspects but also mental health, emotional support, and respect for the individual's identity.

Myth: Intersex Individuals are seeking special rights

Fact: Intersex individuals are advocating for equal rights and respect, not special privileges. They seek to end discrimination and ensure their right to bodily autonomy and self-determination, like any other person.

Myth: Intersex Variations are always visible

Fact: Not all intersex variations are visible at birth or even throughout a person's life. Some variations may only become apparent later in life, and some are not visibly noticeable at all.

A Guide for New Parents

Congratulations on Arrival of Your Precious Baby!

This guide is meant to offer you information about common questions and concerns surrounding differences in sex development, also known as intersex variations. It's here to help you warmly welcome your baby and make thoughtful decisions that promote the health and happiness of your child and your entire family.

Announcing the Birth: Boy or Girl or Healthy Baby The initial question on everyone's mind when a baby is born is often whether it's a boy or a girl. If you've just welcomed an intersex child, it can be challenging not to have an immediate answer to this question.

Tip 1: You can use text and email updates to keep loved ones. Consider phrases like, "We're delighted to introduce our precious baby (name)… We'll reach out when we're ready."

Tip 2: In several Indian communities, it's common to have a "pet name" or "family name," which you can also choose as an option to delay the announcement of your child's name if that feels more comfortable for you.

Tip 3: We understand that in today's social environment, children might face challenges if they are not identified as either boys or girls. Therefore, we recommend registering intersex children as males or females. It's important to be aware that, like all individuals, they may grow up to identify with a different gender or sex.

Tip 4: Remember that it is neither compulsory nor necessary for you to share information with all friends or family members unless and until you are comfortable and/or ready to do so.

Need for normalizing surgery Cosmetic surgeries may be recommended to make your baby’s genitals, testes, and/or ovaries more typical for their biological sex. The intention behind cosmetic medical treatments is to help your child fit in, which is why they are sometimes called “normalizing” surgeries. At times, they may be recommended with the misconception that they can prevent your child from identifying as lesbian, gay, bisexual, or transgender (LGBT). There is no scientific evidence to support these beliefs. Instead, these surgeries can cause permanent scarring, pain, loss of sexual sensation and lifelong depression.

Thorough research is important In a very small number of cases immediate medical attention is required for the child’s health, and surgery may be needed. Please ask questions about the medical condition, course of treatment advised, the pros and cons of the treatment being advised, the consequence of not accepting the treatment being advised, alternate treatment options, etc.

For information and support, you can write to us on support@icfi.org.in