My intersex story

by
22 February 2019

Sara Gillingham is fed up with being treated as ‘disordered’

BBC/Neal Street Productions

Lois Parry (Holly Freeman) in BBC 1’s Call the Midwife discovers that she is intersex

Lois Parry (Holly Freeman) in BBC 1’s Call the Midwife discovers that she is intersex

HOW difficult it is to get heard, while others are talking about you. This is how I feel in the Church of England, as someone born with intersex traits.

To explain intersex further, I was born with variations in sex characteristics (VSC). This means that I do not fit into the typical understanding of what it is to be male or female. I am talking about biological characteristics, not about gender identity. Another term that you may hear in more clinical settings is “differences in sex development” (DSD).

Sara Gillingham

Intersex is an umbrella term that covers a number of traits, be it in genitals, chromosomes, or gonads, and can be found in an estimated 1.7 per cent of the population. Some of these variations are obvious at birth; others may be discovered during puberty or early adulthood, and, in some cases, not at all.

When I was aged one, I underwent irreversible surgery that was largely cosmetic at Sheffield Children’s Hospital. Even as a young child, I knew that I was somehow different, and that it was a secret. I was a very shy child who lacked confidence, and found it very difficult to make friends. I used to over-eat, finding solace in food.

Later, I was referred to Great Ormond Street Hospital, where I was examined naked in front of medical students. I underwent further cosmetic surgery at 11 years old, in a tiny hospital in the West End of London, Shaftesbury Hospital. I was never told what the surgeries were about, as it was then thought it would be better if no one, including me, knew. I was always removed first from the room to allow doctors to speak to my parents without my overhearing.

I was a tomboy, which caused my parents further stress, as they were encouraged to raise me as a “typical girl”. But raising me this way was not better: I was still bullied throughout my school years, as children sensed that I was different. I had little resilience and was traumatised, as the secrecy that surrounded me led me to believe I was something to be ashamed of.

 

I CONTINUED to struggle into early adulthood. It was not until I was in my forties that I recovered my medical records and found out the truth. It was liberating, as it explained all that had happened to me, and helped me lift the secrecy that was so stigmatising.

That is not to say, however, that all my struggles are behind me. I have faced discrimination in church, and from Christians outside church; I have been called “possessed” and “an abomination”; I have had rumours spread about my gender and embodiment; and have been worn down by the constant drip of being called “disordered”.

In a church context, there is no specific pastoral care for intersex children. In fact, there are elements of the Church’s teaching which positively undermine it. The Church has, largely unwittingly, “othered” people from birth if they do not fit normative assumptions about what it is to be made in God’s image.

This understanding of God’s image rests on assumptions about how we are embodied, with fixed mental and physical traits. Any deviance from these may be considered impure or in need of healing.

The Church sees me as problematic, and seems unable to respond to safeguarding and pastoral concerns until the bishops have had time to reflect theologically as part of the Living in Love and Faith (LLF) project (News, 4 January). The difficulty for the bishops is that I am still judged by some to be “disordered”, someone created as a result of the Fall, someone in need of being corrected or in need of surgeries which, research shows, have such detrimental outcomes for countless people’s mental and physical health — including mine.

 

RECENTLY, the Church of England Evangelical Council (CEEC) published a book, Glorify God in your Body (News, 1 February), which starts not with the pastoral needs and concerns of intersex people, but by arguing that there are not many of us. My immediate response is to quote another friend who was born intersex, Georgiann Davis: “Why assert that the figure is so low? How low does the figure need to be before this is the right ethical response?”

The definition of intersex which I have given you is that used typically in clinical settings rather than the narrower definition used over 16 years ago by Leonard Sax, which includes only genital variations (and then not all of those), and which quotes the figure of 0.018 per cent promoted by the CEEC.

istockThe orchid has been adopted by several intersex groups worldwide as an emblem

I would also say to the CEEC that it should respect the right of intersex people to self-determination, and that includes determining their choice of language. It is not for others to determine what our preferred language should be. Again, Glorify God in your Body goes on to argue why we should be considered “disordered”, using the language of “defects” and “abnormalities”.

One problem with using these terms is that it pathologises variations that have no need of medical attention, such as surgical or hormone treatments. It is unhelpful and distressing that many intersex people have been subjected to non-consensual interventions for purely cosmetic reasons. This ham-fisted approach means that those who do need medical treatments often do not get it, and those who do not need it, do. We know from research that ill-advised pathologisation of all VSCs has negative mental and physical health outcomes.

A small aside: many variations in sex characteristics do not affect fertility, which the CEEC book seems obsessed by.

 

THIS now brings me to Living in Love and Faith, and further concerns. First, there is no one on the thematic groups who has intersex lived experience. It is immoral to talk about people without them. What is of even greater concern is that theological reflections are being written about intersex people by those who have not spoken to anyone intersex about their experiences.

There is also a practical issue, as the lack of stakeholder involvement means that simple mistakes are being made. In the original LLF documentation describing the wider-participation phase, intersex was wrongly categorised as a gender identity.

I am not yet convinced that the bishops producing the teaching document have a basic understanding of biological sex, gender, and sexuality. For instance, on the C of E website, “asexual” is incorrectly categorised as a gender identity rather than a sexuality. While the documents being produced by LLF exhibit a high level of theological scholarship, they lack a basic understanding of the subjects that they are seeking to examine.

In the LLF wider-participation phase, the bishops ask me what resources I would like to help me think and learn more deeply about my own human identity as someone born intersex. I ask, instead, what resources they would like. They should be inviting me to speak of my lived experience, and allow me to be present during their conversations about intersex people.

It is time to stop instrumentalising intersex people. Too often, the Church’s current conversations are not about our concerns as intersex people, and the discrimination that we face. Where is the good theology that can help to address our concerns about non-consensual surgeries, secrecy, stigma, and the lack of informed health care?

It is time to listen to simple churchgoers like me, who do not hold positions of power and authority. Many intersex people are overcoming the secrecy and stigma and finding their voices outside the Church.

The challenge now is to find ways to create a Church in which people can find their voices and flourish. Those outside the Church have much to teach us.

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