Every year, OII Europe (Organisation Intersex International Europe) – the umbrella organisation of European human rights based and intersex-led organisations – hold campaigns for the Intersex Awareness Week. In 2023, it was called “DEPATH INTERSEX” with the aim of helping people gain an understanding of what pathologizing intersex means, why it has to stop and how we can start depathologizing intersex.
We talked with Ins A Kromminga, Awareness Raising & Campaigns Officer for OII Europe to learn more about the campaign.
Ins, this is not the first time that you have organised a campaign for the Intersex Awareness Week. How long have you been doing it?
We have been doing the Intersex Awareness Week campaigns at OII Europe since at least 2016, when we presented greetings from intersex and their allies in their respective languages in form of short videos
The campaigns focus on different angles and target groups, but all share the general aim of raising awareness of the reality of intersex people, which intersects with various issues, such as ageing, medicalisation and pathologisation, or discrimination, access to work and education. In 2019, we ran a campaign called #MyIntersexStory, which was already documented by sogicampaigns.
Has it become easier with time to engage the audience and spread the word?
The intersex movement has faced a dearth of intersex-led information globally, amidst widespread misinformation and a dominant medical framing of intersex issues. The movement has had to pioneer essential resources, including new empowering and depathologizing terminologies.
This struggle to combat epistemic injustice and to dismantle prejudices and assumptions about intersex people continues, although it has improved. We have also seen very positive developments in legislation and in the support and recognition of the demands that the intersex human rights movement has formulated over the years, for example in the statements of the International Intersex Forums (IIF). In 2021, we created a campaign during Intersex Awareness Weeks to celebrate and highlight the 10th anniversary of the first IIF.
Why do a different campaign each year instead of relaunching the same one?
Over the years, the intersex community, including OII Europe as the regional umbrella organisation, has become more empowered to address different issues. That’s why each year, we take the opportunity to focus on a specific theme for the IAW campaign. It is a way of raising awareness and reminding people that there is already good human rights-based material out there, produced by intersex-led organisations such as OII Europe and its members.
In addition, there is still so much to talk about that is not yet well known about intersex lives, so we are creating alternative narratives to the still very dominant view in most societies that sees us as ‘medical disorders’. The IAW campaigns are a good opportunity to highlight a particular aspect of intersex life or reality that has not yet received the attention it deserves.
How do you choose a topic for each year’s campaigns?
As a European umbrella organization, staying close to our community and aware of their pressing issues is crucial. Through ongoing exchanges and annual events like the OII Europe Community Event & Public Conference, we create spaces for sharing experiences and brainstorming. The outcomes of these discussions shape our campaign focus, ensuring alignment with our Strategic Plan.
Let’s talk about the 2023 campaign. Tell us a bit about the preparation process. When did it start, how did you decide on the topic? What did the preparation process involve?
The decision on the theme of the 2023 IAW campaign “DEPATH INTERSEX” started a few years ago as a much more general idea around intersex health and access to health. Given the broad topic, we first assessed existing information within the intersex community to determine our focus. Since national intersex organizations have produced excellent resources on health access and needs, we shifted our focus to addressing the misconception that intersex inherently requires medical attention.
Did you do any research prior to launching the campaign?
During our community event in Paris in May 2023, we held a workshop to gather and discuss with the European community. From the outcome of this workshop and specific meetings I had with experts and colleagues from the intersex community, as well as some additional research, the campaign took shape.
Our campaigning is already very much informed by the day-to-day work we do here at OII Europe. We are constantly immersed in how to raise awareness of intersex rights and how best to support national intersex-led organisations and activists to fight for intersex human rights and improve the lives of intersex people on the ground.
What is the campaign about? What did it involve?
The campaign brings various aspects of pathologisation to light and seeks to raise awareness of a particular facet of being intersex in a binary world.
The pathologisation and medicalisation of intersex bodies are key issues that prevent us from accessing unbiased healthcare or seeing our lives as valid and real. It is helpful to understand that this is about different perspectives on how we define human sex and gender: There are basically two ways of looking at intersex bodies: the medical model and the social model. The common view is that if a person’s body does not conform to the normative idea of male and female, this is seen as a ‘disorder’ and something that needs to be ‘fixed’ (medical model). This model persists in the latest revision of the WHO’s International Statistical Classification of Diseases and Related Health Problems (ICD), and attempts by the intersex community to depathologise the language within the ICD have been ignored. What the intersex human rights movement has consistently said is that it is not our bodies that need to be ‘fixed’ – it is the social concept of sex and gender and the stereotypes associated with it that need to be changed (social model).
This pathologising paradigm is not only discriminatory, it can be detrimental to our mental and physical wellbeing: in order to access health care that takes into account our actual individual health needs, rather than applying a generalising filter of ‘disorder’ to us, we depend on health care providers and doctors who can reflect this crucial detail in their own approach.
For the other element of the campaign, the question was how to create graphics and messages that would both make people curious about what this is all about, and at the same time avoid any stigmatisation and negativity with a very negative topic like pathologisation. We chose to contrast the very serious calls for change and demands of the intersex community with cute animals and speech bubbles. This is a strategy to shake up some of the viewer’s or reader’s expectations or reservations about this topic by creating this appeal to cuteness (everyone likes fluffy animals). Another layer is the fact that when we talk about pathologised intersex bodies, we are usually talking about the bodies of intersex newborns and very young children. This makes it even harder to address in a light-hearted way. There is also a sense of humour, irony, hope and above all agency in this contrast of subject and visuals – in this part I am always thinking about the intersex community and how to uplift and support their (our) concerns and daily struggles for survival.
Who were the target audience? Why?
The target audience is always “everyone” as intersex is unfortunately still, after many positive accomplishments, a very unknown, misunderstood or stigmatized topic.
Of course, when we talk about depathologising, the question is who is doing the pathologising in the first place? That would be, firstly, the medical profession and its standards, including the ICD and the WHO, but secondly, and intertwined, our societies and their ideas of what is “natural and healthy” or who needs to be “fixed”. The concept of a strictly clear difference between male and female does not reflect the actual biological facts of nature and confuses them with stereotypes of identity aspects such as what makes a man or a woman. This is a deep subject in itself, but because it is so naturalised and embedded in our society and culture, it is necessary to point it out here. This feeds directly into all aspects of how we distribute knowledge and norms, through education in schools, through raising children and teaching them our values, through cultural hegemony and language. To return to those who are pathologised by these things, in this case intersex people, while we are part of said societies, as children, adolescents, young adults, co-workers, family members, neighbours, elderly people, etc., we all have in common the experience of systemic and epistemic injustice that dehumanises difference.
For this reason, “everyone” is indeed our target group, and everyone should be made aware of the aspects in which the human rights of intersex people are being restricted or violated.
t’s been almost four months since the campaign. What can you say about the results? Did you achieve the goal(s) you intended?
It is difficult to say how much reach and impact our campaign has had, at least for us who do not have the capacity or tools that a dedicated campaigning institute would have. We can see the clicks and visits to our social media posts and websites, and the number of downloads, but it is more difficult to assess the quality of bringing this human rights-based resource of knowledge and value to the public. It is also now a resource for all intersex human rights defenders and the work they do in their local or regional contexts. It adds to the ever-growing pool of knowledge and language being created by the movement, whether at the activist and NGO level, such as our work here at OII Europe, or in academia and the social sciences.
How did you disseminate information about the campaign?
We disseminate all our campaigns via social media with a link to our dedicated campaign subwebsite campaigns.oiieurope.org. We also share it within our networks and through our newsletter.
One plan we are considering is to build on the campaigns by creating additional resources such as brochures and flyers, or even in the form of future events and follow-up projects.
Any advice you’d like to share with other activists?
There is usually already a lot of great information created by our community that is worth revisiting and that deserves our attention. If you have worked on a statement or provided a service to the community, see if you can build on it and create further resources from it, make it more prominent to share the valuable information in a new way, whether it be a social media campaign with graphics that are now very easy to create with free tools such as Canva or Adobe Express, or creating little video clips with your smartphones in combination with these online tools and sharing them on your social media platforms. We still don’t have a Tiktok account as that would open up another can of worms/infinite communication, but it all takes attention to detail and commitment.
For me, as someone whose background is in the visual arts, I always yearn to find ways to communicate through images or graphics, but if you are more comfortable with text, there are also many ways to use text or speech, narration or even text and music! I think it is valuable to build on our creativity and incorporate artistic ways of storytelling to get our messages across.