About Intersex

Intersex is about our bodies being different

Intersex variations are many different conditions where a person is born with an inner or outer anatomy that doesn’t correspond with what a typical female or male body is supposed to be. Intersex variations can also be called variations in sex characteristics. There’s a broad spectrum of intersex variations where some require medical treatment and some don’t.

As a rights organisation RFSL chooses to use the word intersex. Since 2006 healthcare, both internationally and in Sweden, uses an umbrella term called DSD, disorders or differences of sex development (DSD). That term encompasses all the different medical diagnoses of intersex variations. DSD is both about genetics and endocrinology, and urology and gynecology.

Intersex and trans are different things

Some confuse trans and intersex. Trans is about that one’s gender identity and/or gender expression break the norms around gender. Many trans people experience gender dysphoria and may want to change their bodies through surgery or hormone treatment. Intersex is mainly about one’s physical body, like hormone levels, chromosomes and inner and outer genitalia. For some people with an intersex variation intersex is an important part of their identity, and for others it’s not. Intersex does not mean that you’re a trans person. Some intersex people are however trans people, i.e. feel that the gender they’ve been assigned doesn’t correspond with their gender identity and identify as trans.

However, there are similarities in the work for trans people’s and intersex people’s right, for example:
– the right to one’s own body,
– the experience of encountering negative consequences from breaking the two-gender norm, and  
– the need for an easier process in changing legal gender than the current law allows.

But there are differences. The biggest is that trans people often fight to get the care they need, while intersex people often fight to avoid care they don’t need. Another difference is that intersex people early in life may have been subject to sex-reassignment surgery that the person might not be comfortable with as an adult.

Intersex shouldn’t be confused with non-binary, which means to not identify as neither female nor male. Intersex is mainly about the body, while non-binary is completely based on gender identity. There are people who are both non-binary and intersex.  

RFSL has a big responsibility to talk about that bodies are different and that variation is the norm. All norms around gender, bodies and relationships can make it difficult having a body that doesn’t look like or function the way we expect. The LGBTQ movement is used to challenging ideas and preconceptions about body and gender. The goal is that everybody should be secure in the bodies and identities we have.

The need for more legal genders

Sweden currently has two legal genders: male and female. Every child born in Sweden gets a social security number based on how one’s body is perceived at birth. That means that some people are forced into a category that may be misleading. Sweden needs to, like Germany, make it possible for both children and adults to choose a legal gender that corresponds to their gender identity. However, it’s not a good solution that all intersex people are automatically assigned a third gender at birth. This is because many intersex people identify as (and therefore are) male or female.

The need for knowledge and support for friends and family

For children who are born with genitalia that are difficult to categorise as either penis or vagina it’s imperative that parents and others who are close to the child can handle the situation calmly. In order to do that, relevant information from healthcare is necessary. Other forms of intersex variations also demand knowledge.

The competency of caregivers matters greatly. A good reception from healthcare influences the parents’ opportunity to relate to their child, both at a younger age and to be able to talk about the body as the child gets older. It’s equally important that society as a whole gets better at communicating and confirming that gender is more complex than that there only should be two separate categories.

The intersex movement is divided

Around the world, and in Sweden, there’s a divide among intersex people and within the intersex movement. For some it’s a given to organise with the LGBTQ movement, since it’s a matter of exposedness to gender norms, the hetero norm and the right to one’s own body and medical history. For other it’s a given to organise as a patient group because it involves the body, care processes and medicating.

It’s important for RFSL to be very sensitive to different needs and perspectives. We respect the different viewpoints and want to contribute to a nuanced debate and activism in Sweden where we clearly position ourselves for intersex people’s right to self determination and possibility to live their lives as themselves.

RFSL starts working with intersex people as a target group

RFSL’s work is about that all people should be able to be themselves by having the same rights, obligations and possibilities regardless of sexual orientation, gender identity and gender expression. In order to get there we challenge norms and preconceptions about what relationships, gender and bodies are expected to be and look like. To include bodies that break society’s expectations is a natural step in that work.

RFSL has collaborated with intersex organisations and intersex activists for many years, and we support intersex organisations and activists in other countries. But we aren’t yet an organisation that currently has a strong national work for intersex people’s rights. We understand that, and our focus as an established movement is to become a platform for, and a partner to, those intersex organisations and -activists that exist. In international advocacy work the term LGBTI is used, and the work for intersex people’s rights is often self-evident. Because of that, it’s a logical step for RFSL to include intersex people as a target group. This happened when RFSL included intersex people in its by-laws as a group that RFSL represents. The reading of RFSL’s name as of 2019 is: The Swedish Federation for Lesbian, Gay, Bisexual, Transgender, Queer and Intersex Rights.

We want to draw attention to that it took a long time and a lot of hard work in order for the LGBTQ movement to fully become trans-inclusive. We will have to listen, meet and cooperate for a long time to secure a strong intersex commitment both in and outside of RFSL.

These are the intersex issues that RFSL works with:

– Challenging the idea that bodies and gender only can look and be in a certain way.
– That medically unmotivated surgical procedures and treatments on people who are born with intersex variations should be prohibited as long as the person hasn’t given their consent. The care given to intersex people in Sweden should be based on the patient’s needs and nobody should be subject to unnecessary surgical procedures. Regions need to review routines and knowledge support in the care given to intersex people.
– That there should be a requirement of consent to change the legal gender of someone born with an intersex variation.
– That medical treatment of intersex people without the patient’s consent should only be permitted if the condition threatens the patient’s life or health.
– That care-givers should be educated in intersex issues with focus on intersex people’s human rights.
– That all intersex people should have full access to their own medical history.
– That intersex people get a complete protection against discrimination.
– Contribute to the strengthening of the intersex organising in Sweden, and see to it that there are links to intersex organisations in other countries.
– Continue to support intersex organising in other countries.
– Offer knowledge and support to those individuals and families that need it.
– Continue the dialogue with care-givers and the Swedish Board of Health and Welfare etc. about the importance of knowledge and collaboration.