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Your Body Your Choice: The Silent Scalpel of Intersex Surgeries

Submitted by on November 10, 2017 – 1:12 pmNo Comment

For over 20 years activists within the intersex community have been calling for changes to how operations are performed on those born with the condition and last year a United Nations convention condemned the practice that it describes as “Intersex Genital Mutilation” within 15 countries including the UK.

 

A scalpel and a choice.

In the Victorian corridors of the Chelsea Children’s Hospital in the 1970s, a young child tries to run away from two nurses. They catch her, forcibly hold her down on a bed insert a needle into her arm and draw blood from her. This is how Sarah Graham, one of the first British intersex activists and intersex comedians, relays the story of being consigned to a ward for a week and then operated on.

She has a rare intersex condition known as Androgen Insensitivity Syndrome (AIS), which is thought to occur in around one in every 20,000 births. Graham was raised as a girl but developed testicles at eight-years-old. Her time in hospital, being operated on held against her will and her lack of understanding at such a young age was just the beginning of her ordeal. She was also never told throughout her childhood that this operation was to remove an undescended testicle and all of these experiences changed her and made her find it hard to trust adults.

“The medical trauma that I had as a child and the way that I was treated in terms of the lies, the dishonesty and the distrust that was put into me, plus the fact that the experiences I had going to Chelsea Hospital and being operated on and all the stuff that happened in that hospital was traumatic. That certainly made me feel like an outsider and made me feel different to other children, it made me very angry against adults in authority. So when I took my first drink when I was twelve-years-old and it was a really big deal for me as it kind of took away the self consciousness, the self loathing and the fear.”

She continues, “The year after I graduated from Goldsmiths [University] I was about 23 or 24 and that’s when I was told that the full truth about being intersex and that sentence, ‘you were told that your ovaries were removed from you when you were eight-years-old but that was actually a lie, you actually had internal testis [testicles] and that’s what we removed’ this was kind of like a bomb going off inside my head, it was just so shocking. So the combination of the lies and also the fact that I had testis [testicles] inside me and obviously no understanding and knowledge of what intersex is, the word that was going through my head very strongly was ‘freak’ and I just felt like this terrible gross freak that nobody would ever love.”

This information caused her life to spiral out of control turning heavily to drugs and alcohol. However Graham was able to turn her life around after a lot of hard work and as well as being a stand up comedian is also a drug addiction counsellor and consultant. Due to the surgery she says that she has had to take hormones on a regular basis for the rest of her life.  She also says that the osteoporosis that she is developing is a consequence from the surgery.

Graham explains how the surgeon spoke to her parents about the operation to remove her testicles stating that “you are signing the death warrant of your child” and “that she will get cancer as a teenager and die” if they did not give consent for surgery for this very rare condition that she was born with. “The risk with your testicles becoming cancerous is actually a lot lower than the cancer risk of your breasts becoming cancerous.”

According to Cancer Research UK statistics as of 2014, 11,000 women die of breast cancer each year as opposed to 60 men who die of testicular cancer in one year. Graham’s solution to avoiding these operations due to the so-called extreme threat of testicular cancer is monitoring the condition, just like sending a woman for a mammogram for breast cancer, “a lot of AIS teenagers and young women [now] are fighting to keep their testis [testicles] and just be monitored […] and if there are no signs of cancer then they keep them.”

What initially links all these intersex conditions, like with Graham’s AIS, are the varying degrees of the XY sex-determination system. The sex of a baby is already established early in pregnancy depending on which set of X and Y chromosome pairs are more prevalent. Yet it is when other chromosome combinations exist that a state of intersex occurs.

A 2016 UN Convention on the Rights of the Child (CRC) report has criticised doctors for their handling of cases where young intersex children are operated on, referring to these practices as “Intersex Genital Mutilation” (IGM). The report also includes accusations that parents are not fully informed of the process of these operations and in some cases even accuses doctors of performing them without the knowledge or consent of the parents. Case studies in the report mention the physical impact of these operations such as with scarrings and the psychological impact resulting in gender dysphoria later on in life due to a gender being assigned to the patient by the doctor.

There are many different types of these intersex conditions with Hypospadias, when the urethra does not run to the tip of the penis but exits along the underside, being the most common with one in every 300 boys in the UK affected. As the conditions vary so to do the types of corrective operations that are performed. For example according to the CRC report, based on information from NHS records from 2000 to 2015, the amount of Orchidectomies, the removal of testicles, from the age of 0-14 years average on about 450 operations per year.

With the excision of Ovotestes, removal of a gonad with both testicular and aspects, the NHS records in the report shows a fluctuation in figures of these operations from the ages of 0-14 years such as in the year 2000, 2001 there were 6.75 of these operations and in the years 2014, 2015 this figure rose to nine operations in that period.

According to Graham when doctors decide on a single gender the focus is more on girls than boys because if testicles are found they are easy to remove rather than to try to construct male genitalia through reconstructive surgery. Graham also talks about how there is a chart that doctors use to determine the size of the penis and clitoris and if either are under the unacceptable size it can result in surgery.

Dr Hayes-Light is a psychologist in child mental health and the director of United Kingdom Intersex Association (UKIA). He underwent medical treatment in the 1960s at five-years-old to assign him to the female sex. He speaks of when he was born that his mother was too ill to be consulted and that his grandparents were told that, “I wouldn’t stand any chance at all of a normal life, this is the usual rubbish, if I grew up and was brought up as male because I didn’t look male.” He was brought up as a girl until the age of three when he began to show signs of not being happy with being one and this feeling never subsided.

At 19 Hayes-Light decided that he wanted to live as a male and underwent procedures to reverse the surgery and now takes testosterone supplements. When he started this transition he wrote to everyone that he corresponded with from his all girls secondary school and found the support overwhelming, “I received a reply from every letter that I sent and every letter congratulated me and said that we are on your side good for you”. This experience at the girls secondary school was the complete opposite to his time at the co-ed primary school which he found to be torturous because he couldn’t play the games that he wanted to play with the boys.

He continues, “My passport said female but I didn’t look female at all, if you saw photos of me in my teens you would think what the bloody hell were people looking at. If you know anything about psychology you know that people don’t actually take a lot in when they look at something and they only think about it later when you quiz them, ‘ooh I didn’t notice that’. So it was a very strange world that I lived in to begin with, because out in society I had paperwork that said I was female but in my private life I was totally male. And even in my relationships, because I am straight, are with women. I thought I am not sure that I like living in two worlds like this, it’s very confusing and very few other people, the majority of the population, don’t have to live like this and it begins to wear you down.”

Yet as the UK moves towards debating a third gender option for official documents and passports, in 2013 Australia passed a law to recognise 33 types of genders for passports and this week Germany became the first EU country to allow parents to register intersex babies with a third gender option. However as far back as 1999 Colombia made the first ruling on intersex rights stating that it was illegal to perform operations without consent. In 2016 Malta made the same legal commitment to those born intersex.

There still seems to be a defining idea in the older traditional British medical establishment of there being just two genders and this generational attitude shows a dichotomy within the NHS with regards to the medical practices towards intersex people as Graham highlights: “[…] still these operations happen in England quite commonly […] however if you are lucky and you have an enlightened GP who understands intersex and you manage to make it to UCL [University College London’s famous intersex unit] the team there are at the cutting edge of management of intersex conditions.”

In the course of researching this piece it was hard enough to find anyone in the intersex community to talk to me about present day operations due to the sensitive nature of the subject. But also even finding a doctor in the NHS to talk to was just as hard due to no one wanting to admit that there was even an issue with the medical procedure to begin with.

Other reasons were also apparent such as a doctor who spoke to me on the phone about these operations but refused to be interviewed as he said that the backlash from people that were angry about theses operations meant that he had been threatened because of another interview about the subject that he was quoted in.

However I then spoke to Dr Mars Skae of Central Manchester Foundation Trust, DSD, and obesity area of specialism, who is part of a new generation of doctors that are compassionate and aware of intersex issues and how people born this way should be treated by the medical community. When asked about some of the out-dated mentalities within the NHS towards gender she did not object to the question stating that “Even somewhere as quite liberal as the United Kingdom I don’t think that they are ready to embrace the issue.”

Dr Skae mentions that she is an “enlightened GP who understands intersex” to such a level that she has been involved in a report, the first of its kind in the medical establishment, which should be published before the end of this year, which looks at issues that affect intersex people with regards to their rights and surgeries to make the medical community and in turn the public aware of these issues. She also states that reading the CRC report motivated her and her colleagues to get their own report out to examine the accusations of these operations.

As long as medical professionals like Dr Skae and intersex units exist more and more people born intersex will be understood and information on this controversial struggle for human rights will come to light. Then hopefully one day the silent scalpel will recede back into the shadows for good.

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 INFORMATION BOX

Intersex is a term used for a variety of conditions that lead to atypical development of reproductive or sexual anatomy. There are several types of these intersex conditions with about 130 to 140 babies born each year in this country who are intersex.

The term Disorders of Sexual Development (DSD) is used instead of intersex by the medical community but has also been used by some groups within the intersex community.

Intersex people have and are sometimes still referred to as hermaphrodites. However hermaphrodites are a physical improbability in humans as it suggests that someone has both fully functioning sets of female and male genitalia and this condition can only be applied to some animals and plants.

Probably the most famous intersex person is the South African middle distance runner Mokgadi Caster Semenya who won gold in both the women’s 800 metres in both the 2009 World Championships and in the 2016 Olympics.There was however much scrutiny regarding her gender, which resulted in her being withdrawn from international competitions until 2010.

In a recent USA Today interview the intersex Belgian super model, Hanne Gaby Odiele, stated:“It’s not that big of a deal being intersex, if they were just honest from the beginning… It became a trauma because of what they did.” Referring to surgery that she had to remove undescended testicles at ten-years-old.

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