Activist struggles to find reparation following surgeries

Activist struggles to find reparation following surgeriesIntersex Awareness (File Photo: Flickr/Sarah-ji)

Activist and photographer open up about her struggles following surgeries she underwent as a child.

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Lu* (30), a photographer and activist, was born in KwaZulu-Natal and currently lives in Johannesburg. She has always wished that she be allowed to decide whether she would have wanted to have her some of her reproductive organs removed. Born prematurely, her parents thought that the abdominal pain she was having at the age of 10 was normal since she was a sickly child.

From the womb

“I was always in and out of the hospital from the time I was born because I was a premature baby. It never occurred to me that something could be wrong with my body internally until my parents took me to the hospital.”

Doctors tried to find out the cause of her pain and they discovered that the development process of her ovaries had not been completed, making her intersex, which according to the United Nations Office of the High Commissioner for Human Rights, are persons born with sex characteristics, such as chromosomes, gonads, or genitals that do not fit typical binary notions of male or female.

“Outside my genitals are obvious that I am female but my hormone levels and ovaries not fully developing means that I did not fit into the typical female classification. Doctors then thought it would be better for them to remove one ovary and the uterus but they had only informed my parents about the removal of the ovary.”

In need of hormone therapy

She only found out about the types of surgeries she had undergone when she got older and that is when she realised that the surgeries might be having a negative impact on her health.

“It was only when I became older and trying to understand what kind of surgeries were performed on me and why they were done. When you go through these types of surgeries where a certain organ is removed, you need to be given hormonal therapy to replace whatever hormones could have been produced by that organ but I was never put on any form of therapy. I only learnt when I met other intersex people that had gone through surgery and were on hormonal therapy.”

Unable to see her medical history of surgeries

In an attempt to find out about what hormone therapy she might need, Lu tried to get access to her medical records at the hospital where she had the surgeries.

“They couldn’t give me the information and the doctor told me that no one had consent to access the information. I had a doctor who was assisting me and he was told that the records did not exist. Everywhere we checked we were told that there’s no record, which is another typical challenge for intersex people,” she added.

The refusal by the hospital to give Lu and her doctor access to her medical records is in contravention of the Promotion of Access to Information Act of 2000 which states that everyone has the right of access to records held by either public or private bodies for legitimate purposes.

The Act further states that either patient him/herself, or someone authorised to act on the patient’s behalf, can request access; ordinarily, the request itself is made in writing and should be responded to within 30 calendar days.

She believes that this raises questions about the experience of doctors who perform these procedures.

“I believe most of the time, the surgeries that they do are surgeries that they could be doing for the first time because maybe they haven’t had an intersex patient with that kind of intersex variation so they do whatever they think will make that person normal. It never made sense to me why they removed those organs because I was still young and there was still puberty where your body is going to change.”

Many challenges, including her health

Her struggle to correct what was done has been met with various obstacles, some affecting her financially.

“I tried to find out about the state of my body which meant that I had to do tests for my hormonal levels and a karyotype (a karyotype is a ‘picture’ of a person’s chromosomes including sex chromosomes). I probably had to start from scratch and these kinds of check-ups are not easy to get done if you’re not on medical aid because the queues and the long list of people who need to get the same tests done are long. Waiting to get such tests done at a public health facility could take up to seven months.”

She now fears that, because she is not on hormonal therapy, she might end up suffering from various diseases.

“My worry was if there were hormones that are not being produced by my body, I need to be taking supplements because I stand a higher chance of having a disease like osteoporosis at a young age. That’s mostly the problem and it’s quite taxing to go through all of that and I ended up taking a break from it because every place that you go, you have to explain why you need the tests done and some questioned how I knew that I needed to get those tests done.”

Paediatrician and endocrinologist at the University of Cape Town’s (UCT) Department of paediatrics, Doctor Ariane Spitaels explains that there are various medical conditions that would result in the removal of ovaries.

“Ovarian cancer or risk of cancer, ovarian torsion (the ovary dies from twisting on its stalk,) large ovarian cysts, ectopic pregnancy sometimes results in loss of the ovary on the side, endometriosis, the pelvic inflammatory disease mostly are problems faced by adolescent or adult women. In children, it could be as a result of ovarian torsion and benign or cancerous growths.”

Spitaels explains that organs and hormones impact the development of children. 

“If a child has no ovaries or loses them in childhood, she cannot have normal pubertal development which involves growing to reasonable adult height, and the body maturing in preparation for reproduction. Generally, young women want these changes, and they are also important for the health of the skeleton (osteoporosis results from premature loss of oestrogen) and the heart. Women without the uterus cannot bear children but it does not cause any physical illness, ” adds Spitaels.

Communications and advocacy advisor Letlhogonolo Mokgoroane from Iranti, an organisation advocating for the rights of lesbian, transgender and intersex people, highlights that surgeries such as the one Lu underwent as a child violate the child’s right to dignity and other human rights, and often parents are not informed of the consequences of these surgeries.

Iranti and other activists are advocating for the right to bodily autonomy, integrity as well as free and full informed consent of children born intersex and their parents. They also want intersex adults who underwent surgeries as children to have access to medical records and accurate information about what interventions took place when seeking redress and reparations.

While Lu wishes that she could have been allowed to grow up so she could make the choices for herself and believes people born intersex should be given the right to decide if they want to undergo surgery when they reach adulthood. – Health-e News 

*Not her real name 

An edited version of this story was published by Health24.