Our Research

Before you read about our research, we'd like to offer you a brief introduction to 'Intersex'.

What is Intersex?

Intersex/variations of sex characteristics (I/VSC) refer to people born with biological sex characteristics that are different to what is typically considered male or female. For example they may have different chromosomes, gonads, sex hormones or genitals.

How common is it?

The United Nations estimates that between 0.05% and 1.7% of infants are born like this – almost as common as having red hair. Being intersex/having variations in one’s sex characteristics is a natural differentiation that occurs among humans.

How does it affect people?

Difference in a person’s sex characteristics do not ordinarily impair a person’s life or physical health. However, medical/surgical intervention on babies’ and children’s bodies has become commonplace so that they can appear and be identified as either male or female. Very often, this medical/surgical intervention is unnecessary and potentially harmful for the person as they grow and develop. For example, after a baby is born, doctors may find it difficult to tell if it is a boy or a girl due to differences in how their genitalia may appear. Sometimes, in addition to other factors/medical tests, a decision will be made to ‘assign’ the baby as either male or female. Surgery takes place to arrange the genitalia accordingly. That baby is then reared according to its assigned/surgically altered sex. There have been many cases where the ‘wrong’ choice was made by doctors and parents and the child has suffered as they have grown through to adulthood. There are two important things to consider about this type of medical/surgical intervention (1) in almost all cases a baby or child does not consent to having their body subjected to such surgery/intervention and (2) the child’s right to bodily integrity. Considering the issue in this way demonstrates that intersex children’s rights and their bodies should be protected.

In other cases, people may not learn that they are intersex or have variations of sex characteristics until they are teenagers, or even older since there are numerous ways being intersex/having variations of sex characteristics manifest themselves. To offer another example, a baby may be born with perfectly ‘normal’ genitalia and no questions or concerns may arise about their sex development until they are in their late teens when delayed puberty or short stature may prompt medical assessment that might reveal a chromosomal diagnosis of mosaicism.

To summarise, being intersex or having variations of sex characteristics, are ‘umbrella’ terms for the many ways in which human bodies may differ.

Why don’t I know more about this?

Public awareness about being intersex or having a variation of one’s sex characteristics is limited and traditionally being intersex was clouded in secrecy, shame and discrimination. In fact, many people may not realise that the ‘I’ in LGBTQI represents intersex. Because there is such limited knowledge out there in the public domain this contributes to burden of secrecy and shame which often fuels the need to intervene so early on babies’ and children’s bodies.

As a society, we often forget how much life and society is organised by gender. Babies’ clothes, toys and accessories are designed and coloured according to gender – blue for boys, pink for girls. We have all-girls and all-boys schools and sporting teams. Usually birth, marriage and death certificates require one box to be ticked – either male or female. Passports, driving licences and most ID cards also require a male/female box to be ticked. Imagine how difficult it might be to change your gender on your birth certificate? Intersex people have often come up against this barrier. Or imagine being an adult and realising that every birthday card you ever received throughout your life did not actually match the ‘real you’?

As a society, we forget how much gender matters. But gender really does seem to matter when a baby is born – and this goes some way towards explaining why so much unnecessary intervention was and continues to be carried out on babies and children and never talked about. There are many intersex people out there whose life stories have never been told due to fear, shame, stigma and secrecy. Consequently, society has no idea about the lives they, and indeed their families have lived, the experiences they have had and what would have made their lives easier and better – either from a personal, social or legal perspective.

Help us learn more and make a positive change!

What is our research about and why is it important?

For the first time in Ireland, we are attempting to understand what life is like for people with atypical sex characteristics. At the moment, there is not enough data about people’s lives to meaningfully engage in policy reform to ensure that their rights are upheld in all aspects of life and society.

This study seeks to change that by conducting a survey of people’s lived experiences and what it means to live with atypical sex characteristics in Ireland. We are doing this in two ways: we are inviting people with atypical sex characteristics to (1) to complete a questionnaire and (2) to participate in an interview with one of our team members to tell us their story.

See our Plain Language description of our project below.

Participating in our research

(1) If you are intersex

Participation in our research is completely voluntary and anonymous. We do not collect any personal identifiers about you (e.g. name, email etc.).

Since we are trying to understand what life is like for intersex people in Ireland, we invite the following people to consider participating:

• People with atypical sex characteristics living in Ireland, regardless of where they were born;

• Irish people with atypical sex characteristics living abroad, and

• Any person with atypical sex characteristics, anywhere in the world, who has lived in Ireland for a time.

If you believe that you meet any of these criteria, please consider the following:

1. Completing a questionnaire (below)

We use Qualtrics XM to administer an online questionnaire that asks about you and your lived experiences.

If you are unable to access the online survey and would rather a hard copy, please email us intersex@dcu.ie and we will arrange to post a copy to you. We will also include a stamped addressed envelope for you to return your anonymous questionnaire to us at the University.

2. Participating in an interview

We intend to capture as many perspectives as possible, that's why it's important for us to speak with people with atypical sex characteristics/intersex; in addition to parents of intersex children and medical professionals who have practiced/are practicing in this area.

We invite you to consider speaking to us about your experiences during an interview. We will facilitate meeting you at your convenience once social distancing measures are eased and we can meet you safely. Alternatively, we can also facilitate speaking with you via Zoom, Skype etc. Please contact us at intersex@dcu.ie and we will arrange this with you.

If you have any other queries about participating in our research, please contact Tanya, Mel or Maria at intersex@dcu.ie Please note all queries are treated with strict confidence.

(2) We also invite some Non-Intersex people to participate in our research

Medical/Healthcare Professionals

If you are a medical/healthcare professional who has experience working in the intersex space, we are really interested in speaking with you. We can facilitate an interview over Zoom/Skype/Phone while social distancing measures are in place. If you would rather wait to meet with us in-person, please email us intersex@dcu.ie and we will arrange this with you.

Parent(s)/Legal Guardian(s)/Carer(s) of Intersex Children

If you are a parent, legal guardian or carer of an intersex child, we are really interested in speaking with you. We can facilitate an interview over Zoom/Skype/Phone while social distancing measures are in place. If you would rather wait to meet with us in-person, please email us intersex@dcu.ie and we will arrange this with you.

Please read our Plain Language Project Description of our project.

Project Description:

Mapping the Lived Experience of Intersex/Variations of Sex Characteristics in Ireland: Contextualising Lay and Professional Knowledge to Enable Development of Appropriate Law and Policy

Dr. Tanya Ní Mhuirthile (PI), Prof. Anthony Staines, and Dr. Mel Duffy, Dublin City University

This project investigates the lived experience of intersex/variations of sex characteristics (I/VSC) in Ireland from lay and professional perspectives. Lay knowledge comes from those who live with I/VSC and their families. Professional knowledge incorporates those working in the area of I/VSC from the medical, health and social care professionals. Intersex/Variations of Sex Characteristics (I/VSC) is a general term that refers to the state of being born with biological sex characteristics that vary from what is typically thought of as exclusively male or female. I/VSC is a normal variation in human biology which does not ordinarily impair life or physical health. A common practice had developed over time of medical and surgical interventions, mostly during childhood, on the bodies of children/people with I/VSC to re-configure them along the socially acceptable gender lines. That is to produce bodies that reflect what society names as male and female bodies. These interventions are facing criticism, particularly in relation to the interventions undertaken on children. The reason for this is concerns about the long term impact on the person. This impact may not be confined to the physical body of the person with I/VSC but may also effect that person’s development and life experience to significant extents

We are interested in speaking with people who live with I/VSC to understand their experience. We are also interested in families who have members living with I/VSC and how they negotiate their life experiences. The other group we will be interviewing are professionals who work in this field medical, health and social care professionals.

For each group who participate we will be undertaking an interviews of about 60 minutes and these will be recorded to allow us to be true to each person’s life experience.

This project is funded by the Irish Research Council under the COALESCE 2019 call.