Intersex refers to someone with one or more innate sex characteristics, including genitals, internal reproductive organs, and chromosomes, that fall outside of traditional conceptions of male or female bodies. Those variations are also sometimes referred to as “Differences of Sex Development.”
Intersex people are not as rare as some may assume. In fact, the prevalence of intersex has been estimated to be as high as 1.7% of the population. (Dr. Anne Fausto-Sterling, Sexing the Body: Gender Politics and the Construction of Sexuality, 2000) That’s about as common as red hair or green eyes and more common than identical twins. People with intersex traits have always existed, but there is more awareness now about the diversity of human bodies. People with intersex bodies, like anyone who is seen as different, can face stigma and discrimination in employment, education, and in healthcare settings, as infants, adolescents, and adults.
We have all seen the headlines. A female athlete is tested and discovers she has XY chromosomes or unusually high levels of testosterone. Some of these athletes are intersex, but they just did not know it. How can that be? Some intersex characteristics are identified at birth, while other people may not discover they have intersex traits until puberty or later in life.
Do not confuse having an intersex trait with being transgender. Intersex people are assigned a sex at birth — either male or female — and that decision by medical providers and parents may not match the gender identity of the child. If an intersex person has a gender identity that is different from the sex they were assigned at birth, they may also describe themselves as transgender. However, not all intersex people are transgender. Most intersex people will have a gender identity that matches the sex they were assigned at birth. So while there is overlap, do not conflate having an intersex trait and being a transgender person. And, just like people who are not intersex, intersex people can have any sexual orientation.
The most pressing concern in the intersex community is that fact that many intersex children undergo irreversible unnecessary surgeries and treatment – without their consent. For many years, the medical establishment has viewed babies born with atypical sex characteristics as having bodies that need to be “fixed.” Some intersex babies and older children have undergone extensive, involuntary surgeries for no other reason than to make their bodies conform to traditional notions of what it means to be male or female. The vast majority of these surgeries are not medically necessary when performed on young children and could instead be delayed until the intersex person can decide whether surgery is right for them.
In some instances, intersex people grow up without ever having been told about the medical procedures they underwent as children. Others report being told that surgery was necessary only to find out later that this was not the case. Increasing evidence shows the harms caused by these surgeries when performed without informed consent, which can include physical pain, loss of genital sensitivity, scarring, and even sterilization, as well as significant psychological consequences and the risk that the sex assigned by the surgical procedure will not match the person’s gender identity.
Intersex people commonly experience emotional harm from this treatment. Many intersex youth and adults today talk about the harmful consequences suffered as a result of unwanted medical exams, hormone treatment, and surgeries, including poor self-esteem, depression, anxiety, and issues with trust and intimacy in relationships. While the intentions of parents and doctors may be good, rushing to “fix” a child’s body simply because it is different most often does more harm than good.
Most of society thinks biological sex is either “male” or “female,” but it can actually be more complicated. This misunderstanding makes intersex people feel alone and unnecessarily ashamed. Intersex people and their families need access to full information and both peer and mental health support. Directing intersex people and their families to a support group is one of the most helpful things a medical professional can do.
Intersex people need autonomy in making decisions about their bodies. Rather than having doctors pressure parents into making irreversible decisions about their children’s bodies without the child’s consent, parents and medical professionals should wait until intersex people are old enough to make their own fully informed decisions about what, if any, medical procedures they desire.
Basics of Covering the Intersex Community
Because many people may not be familiar with what it means to be intersex, it is important to accurately and thoughtfully describe what it means.
How to describe the fact that someone is intersex:
- Susan is an intersex person.
- Susan is intersex.
- Intersex people are…
- People who are intersex…
Accurate terminology is key. It is crucial that media coverage of intersex people use accurate language rather than relying on outdated and inflammatory language.
Use: Intersex as in “intersex traits,” “intersex variations,” or “intersex bodies.”
Avoid: “Disorders of Sex Development.” In 2005, the medical community formally introduced the term “disorders of sex development,” or “DSD” for short. However, this term is controversial and pathologizing, and should be avoided. While some advocates have opted to replace “disorders” with “differences,” much of the intersex community has moved toward nearly exclusive use of the term intersex and away from “disorder of sex development” and “DSD” entirely. However, some people born with intersex traits may use DSD language (particularly “Difference” of Sex Development) and prefer not to use intersex. It is important to honor individual choice around terminology and identity when describing their own personal experience.
Avoid: “Hermaphrodite.” This term is outdated, medically inaccurate, and is considered derogatory. (Note that a minority of intersex people have chosen to reclaim the term and find self-identifying this way to be empowering. But it should not be used by media unless it is in a direct quote or you have confirmed that it is the term the person wants you to use to describe them specifically.)
Do not make assumptions. Let people share their own stories. It can be hard to understand what it is like to be intersex, especially if you have never known an intersex person. If you are interviewing someone who you think may be intersex or who has shared that they are intersex, let them share the information they wish to share. Respect their privacy.
Avoid focusing on genitals or bodies. It is inappropriate to ask an intersex person questions about their bodies or genitals. Typically, those questions are only asked out of curiosity. They also distract the journalist and the reader/viewer from understanding the whole person and from focusing on larger issues that affect intersex people, like medically unnecessary surgeries and social stigma. Unless an intersex person volunteers this information, it is also inappropriate to ask for details of surgeries or medical procedures they may or may not have had.
Being intersex is unique for each person. Do not make generalizations. Being intersex might have little impact on a person. Each intersex person has a different body, has had a different experience, and feels differently about being intersex. Being intersex also does not mean a person will have a certain sexual orientation or think about their gender in a set way. Do not make assumptions. Not all intersex people identify as intersex, with some preferring other terminology to describe themselves — please ask what language they use to describe themselves.
Occasionally, surgeries on intersex children may be medically necessary and appropriate as long as a parent or guardian gives fully informed consent. Do not assume that all intersex medical treatment is unnecessary and harmful.
Some intersex people may choose to use gender pronouns other than he or she, like they, zie or hir. Always ask intersex people what pronouns they use.
When writing about intersex people or issues, always talk first to intersex people. It is also important to bring in other qualified experts who can provide accurate, fact-based information.
When covering intersex issues, prioritize speaking with:
- Intersex adults who underwent non-consensual, irreversible, and unnecessary surgeries
- Intersex adults who escaped unnecessary surgery
- Parents who support their intersex children
- Intersex organizations (see below)
- Human rights organizations
- Intersex-friendly physicians