FIVE THINGS TO SHARE ON INTERSEX AWARENESS DAY

FIVE THINGS TO SHARE ON INTERSEX AWARENESS DAY

By Anick @intersexAF

Five years ago, I made one of the biggest decisions of my life so far, when I opted to share my intersex story. For those who had known me beforehand, aside from my immediate family and plenty of health professionals, it was a surprise. I have always been vocal about my mental health, I spoke openly about my life, I was an open book – or so they thought.

You may be wondering how I reached this point and why I decided to be vocal, and I think for me, it was a last chance at living a purposeful life. It was something about myself which I had kept hidden for 20 years but I had reached a breaking point, and ‘coming out’ seemed like the only way I could survive.

Ultimately, it felt like what I was doing was peeling back the layers. I’d spent so long pretending that my reality was different, wearing a costume of a normal boy, that I did not really see the point in living. It was tiring to spend most my time trying to please other people and hide the who I was underneath. I’m not talking metaphorically; I’m talking quite literally here.

Ever since I was born, my body has defined who I am – something which everyone can relate to. However, for me, it was a bit different because not only was I born premature, but the attending physicians could not accurately determine at first glance, whether I was a boy or a girl. It was something to do with the way my genitalia looked: I was born with a variation in my sex development, one that they described as “ambiguous” and “atypical”.

After moving my gonads from my abdomen into my scrotum at four months, a team of surgeons began the process that would shape the rest of my life: surgical management of my genitalia. Being born in the mid-90s in England meant that the term ‘intersex’ had largely fallen out of favour within the medical community. However, it would be a further decade before the medical terminology was changed to “Disorder or Difference of Sexual Development”.

In any case, I was not specifically brought up with the word “intersex” and it is one which I myself deeply misunderstood at first. Instead, I was given a number of different diagnoses at various points in my childhood. I was seen by a specialist consultant, GP and paediatrician every 6 months since birth. Since there was a physical difference that was present, that was the focus – I would be measured, prodded, tested and observed by teams. I was not given much in the way of psycho-social support and neither was my parents.

I was very withdrawn about my appointments growing up, I didn’t know other people like me even existed and I thought the purpose of all the treatments was to make me normal. I felt desperately alone and misunderstood. Everyone was telling me that I was a boy, I didn’t feel like a girl, but physically my body did not look like any of the textbooks.

Sometimes, it feels like I was born with a body that was between ideas of what it meant to be a boy or a girl, and I was also unhelpfully born at a point where the medical management of intersex babies was a postcode lottery. My doctors had agreed that as my karyotype was XY, it was better to raise me as a boy; but keep a close eye on how my body developed.

I am very lucky in this respect, previously, it was a possibility that my gonads would have been removed and I was be assigned female at birth. Although, this is not something that I learned more about until I grew older and researched the topic.

Here are five key questions that I want to answer on Intersex Awareness Day:

1.     What does intersex mean?

Intersex is an umbrella term – which describes people who are born with variations in their sex development. This means that the person’s sex characteristics are different to the stereotypes we are taught about the body: sex characteristics are things like chromosome patterns, internal/external organs like gonads, testes and ovaries, as well as the overall appearance of the genitalia and sometimes the hormones.

Not everyone with a variation of sex development will use the word intersex. Some will use terms that are more medicalised or variation specific. It is important to note that language in this area is contentious. For ease, it’s best to mirror the language of the person you are speaking to.

2.     How common is intersex?

Unfortunately, there are no accurate statistics within this area due to a combination of factors mainly due to consensus around what “counts” as intersex. Different professionals within medicine and elsewhere do not always agree on particular variations. Some variations are more common than others, each have specific levels of severity and all of this means that the number could be up to 1.7%, or even higher – this is the figure stated by the United Nations.

One day, as the stigma and secrecy around intersex diminishes, hopefully we will be able to collect greater information on how many people are impacted. Until then, it is really up for debate.

3.     Is intersex part of the LGBTQ+ community?

As intersex is about an individual’s sex characteristics, it is distinct from sexual orientation, gender identity or expression. Therefore, a person who has an intersex variation could be part of the LGBTQ+ community, but not all intersex people are. Intersex people can have any sexuality or expression. Intersex people can be fe/male, non-binary, trans or some may use intersex as their preferred label, or another term. Again, this is linked to definitions, cultures and experiences.

Many intersex activists have proudly worked with the LGBTQ+ community and continue to do so, as the focus of these communities are not solely on sexuality but often focuses on human rights. It is important for spaces and funding to be made available for people who are intersex and LGBTQ+.

4.     What are the key issues for the intersex community?

There are a variety of unique concerns that impact intersex people from unnecessary surgeries to lack of awareness and support available. For decades, there has been campaigning to end intersex surgeries. These surgeries are performed for a variety of reasons, and essentially the issue focuses on those done for cultural reasons and not for life-saving purposes. Not all intersex people have had surgeries as children, but healthcare for all intersex people (including adults) is problematic.

Depending on the variation an individual has, they may be subjected to treatment which can include the use of hormones or surgery. Whilst consent is usually derived from their caregivers, even when the individual is involved, the information available to them is limited. Sometimes, people are not told the true nature of their diagnosis, there is a rush to perform treatments, no psycho-social support is provided and to make matters worse, there is a lack of long-term studies to prove the effectiveness of the treatments.

5.     How can I support the intersex community?

Never speak on behalf of intersex people or caregivers, there are many of us who are sharing our experiences globally. Most importantly, do not bring us up as an argument in debates about sex and gender – that’s harmful to us. The best way to be an ally to the intersex community is to highlight, raise and empower intersex people to share their experiences. If you’d like to support the community, do some research on what the key issues are and find out what your local area does for intersex people.