“In the beginning, I really thought I might be the only one”, says Hiker Chiu, a Taiwanese intersex activist, reflecting on more than a decade of activism. In 2008, new to intersex activism and having started the organisation OII-Chinese* in response to the need for information in Chinese, Hiker felt that s/he might be the only intersex person in Asia, and certainly the only activist.
Hiker continues: “A few years later, in 2013, I attended an ILGA Asia Forum** in Bangkok and talked about being intersex. It was the first time that intersex identity was discussed in Asia among LGBT movement activists.” The conversation was important, but perhaps, just as significant, Hiker recalls: “I met another intersex person from Thailand at that meeting!”
The invisibility and isolation that Hiker Chiu describes are common intersex experiences. Intersex people are born with sex characteristics – genitals, gonads, hormones and/or chromosomes – that do not fit typical binary notions of male and female bodies. Intersex bodies are usually seen as “wrong”, and being intersex is shrouded in stigma and shame. Parents are often advised to conceal the fact that their child is intersex. For parents with money, doctors often recommend “normalising” surgeries on infants’ and children’s bodies – without the child’s or young person’s consent.
This widespread lack of awareness about intersex variations leads to human rights violations – such as unnecessary genital surgeries – in Asia (and around the world), yet being intersex is not rare. Estimates suggest that close to two of every 100 people in the world are born with a genetic, hormonal or anatomical sex variation that sets them outside the male/female binary. In other words, intersex people are about as common as redheads, and a lot more prevalent than twins.
Thanks to the work of intersex activists worldwide, intersex awareness is growing. Over the last decade, intersex activism in Asia has gained significant momentum. In 2018, intersex activists representing organisations from ten Asian countries – Hong Kong (China), India, Indonesia, Myanmar, Nepal, Pakistan, Philippines, Taiwan, Thailand and Vietnam – gathered for the First Asian Intersex Forum. They founded Intersex Asia, the first regional network of Asian intersex organisations and activists “to work toward the promotion and protection of human rights of intersex people in Asia, […] and to ensure that the rights to life, bodily integrity, physical autonomy and self-determination of intersex people are promoted and protected everywhere.”
This activism is urgent. As Hiker, Intersex Asia’s Chair and Executive Director, explains, intersex people often live in hostile environments: at home, at school, at work. “When you are seen as not fitting in the categories of male or female, harassment and bullying are common. Intersex kids are often driven out of school, which impacts their ability to support themselves. Intersex people often end up working in the informal sector, which makes them economically vulnerable. The parents of intersex kids often try to hide them, or they may kick them out of the house; this happened a lot during the pandemic. Mental health is a major issue, and many intersex kids are suicidal”.
Building visibility and community
In addition to promoting the dignity and human rights of intersex people, intersex activism also breaks down isolation and connects intersex people with each other. Jeff Cagandahan, co-chair of Intersex Asia, explains: “We need this movement in Asia because there is such a lack of awareness, and a lack of language. The word ‘intersex’ is often unknown, even to intersex people themselves. Intersex people are often invisible not only to the world, but also to each other and themselves.” Awareness raising and community building are two important pillars of Intersex Asia’s work. Research recently released by Intersex Asia on the effects of the COVID-19 pandemic emphasises the important role played by intersex-led groups: these organisations emerged as a major, if not the only, support system for intersex people in Asia.
Resourcing intersex activism
In 2017, Mama Cash added support for intersex activism to our mission statement. We had supported intersex groups for several years, but we realised that we needed to name intersex people to counter intersex invisibility and ensure that resources flow where they are needed. In an analysis done in 2019, we saw a sharp increase in the letters of interest we received between 2016 and 2018 from intersex groups. Of the 624 applications that were most closely considered for funding by our programmes staff, we saw that the number received from intersex groups grew from zero in 2016, to ten in 2017, to nearly thirty in 2018.
While intersex organising is vibrant, resourcing is not keeping pace. Research released by Astraea Lesbian Foundation for Justice (and partners) in 2017 showed that nearly half of intersex groups worldwide received no external funding. More than three-quarters had annual budgets of less than $10,000, and fewer than one in five had full-time paid staff. Indeed, during thirteen years of activism, Hiker’s salary from Intersex Asia is the first time that Hiker’s activism has been remunerated.
Funding is crucial, but so are other types of non-financial support that funder-allies provide. As Hiker says, “We have received grant funding from Mama Cash, and last year Mama Cash provided urgently needed support during COVID-19. But what we need goes beyond money. Mama Cash’s support is important because it means that intersex people are seen and acknowledged. We feel connected. We have found our family.”
* OII is Organization Intersex International, a global network of intersex groups; OII-Chinese belongs to the network.
** ILGA is the International Lesbian, Gay, Bisexual, Trans and Intersex Association.