The Observer (Kampala)

30 July 2013

Uganda: The Secret Life of an Intersex Person

When most people are born, the doctor shouts out, 'it's a boy!' or 'it's a girl!'

It is assumed a child should be either female or male at birth, with one peep at its genitalia by the midwife. But what do you do when confronted with a baby whose body is not easily categorized as male or female? A baby with both male and female genitalia. Or a man who menstruates. Or rather a woman without breasts...

Unlike typical girls and boys, there are no guidelines telling society how intersex people are supposed to be treated. Does anyone remember South African Caster Semenya - the champion of the women's 800 metres world track-and-field championship in Berlin 2009?

Some felt cheated, speculating that they had competed with a man in a women's heat. Her enviable six-pack, tight abs, masculine voice and arms were confusing, yet hormone tests revealed she has internal testes - the male sexual organs that produce testosterone - and has no uterus or ovaries.

To bring it closer to home, remember Juliet Kaggwa, the young student at Gayaza High School in the late 1980s, who caused quite a stir in the media when it was revealed she was not only woman, but in some aspects a man too. Yet such is the secret life 30-year-old Gloria Kanyesigye has had to live through and heal from.

She has Congenital Adrenal Hyperplasia (CAH), a condition that has enlarged her clitoris making it resemble a small penis, closing off her vagina in the process and preventing her from menstruating all her life.

Shrouded in controversy:

At the age of nine, Kanyesigye began to suspect something wrong - she was not developing breasts like her two sisters. In fact, they kept telling her that she may never have breasts but countered it by telling them she was still young. While in P.6 at Lugazi primary school in Mbarara, she learnt about the reproductive cycles of both men and women. Developing breasts and menstruating were among the character traits girls developed at puberty. Kanyesigye had neither.

"When I heard this, I got scared and my friends started pointing at me as abnormal and thinking that I might probably be a boy," she recalls.

However, she knew she was female because her birth certificate said so. She grew up an orphan under the guardianship of her grandmother, Janat Nabikoowa, in Mbarara. She completed P.7, still with no breasts, joined Lugazi Secondary School in 2000 and nothing changed. Inferiority complex confined her in its prison so much that whenever the school carried out pregnancy tests, she would escape.

Her siblings thought she was abnormal and her elder brother once told a cousin to cut off part of her (big) breasts and give them to his sister. Yet despite the fact that she didn't get her menstruation periods and had a flat chest, her puberty seemed normal to her. But her story was just getting started.

Noticing a penis-like organ:

She joined St Peter's Secondary School Mbarara for her senior two and because of her state, feared to bathe with others.

"I would wait for the rest to bathe, but one time a girl saw me and her first reaction when she looked at me was, 'What is wrong with you... you are the only one without breasts in the whole school'!" she recollects.

Then came time for elongating the labia minora called okukyalira ensiko (visiting the bush) in Buganda. Usually young girls in boarding schools do this communally. When Kanyesigye pulled up her skirt, she noticed a dreadful difference between her and the other girls. Her clitoris was pointed like a penis, where other girls had the tiny, bean-like feature known to be feminine. In fact some students baptised her 'boy'.

"My observation and their ridicule made me draw a painful and bitter conclusion that I might not be a real girl," the soft-spoken Kanyesigye, who had been nicknamed 'Kawala,' said.

Although she felt she should face the world brazenly as a girl, that moment traumatised her and made her retreat from the frontline of fighting for her identity as a girl. She went back to the dormitory and starved herself to sleep. Attending classes became optional and steadily, her performance declined. Stifled by limited finances at home, she was forced to drop out of school altogether in S.3.

After this cocktail of embarrassing incidents, Kanyesigye confronted her grandmother Nabikoowa about it. Nabikoowa reportedly said: "Your parents were supposed to take you for surgery at a tender age but because of lack of money, they didn't."

Those words painfully gnawed at her so much that she told her cousin, a nurse, to help her. When she was taken to see a doctor, she was told that she had a complicated condition that could only be rectified by surgery at Mulago hospital or in South Africa.

But that help came at a price. Her once beloved cousin now changed her attitude towards her and even started gossiping about her. Kanyesigye decided to solely find help.

Finding Help:

One day while Kanyesigye watched UBC TV, Betty Tibaleka, a counsellor who used to host a talk show, The Untold Story, hosted Julius, the "only boy who attended Gayaza High School".

He narrated his tale - from Juliet Kaggwa to Julius Kaggwa - how for the first 17 years of his life he was a girl. In his autobiography, From Juliet to Julius; In Search of my True Gender Identity, Kaggwa writes that he developed breasts, hairy legs and found himself attracted to girls.

Also, while in Natale primary school in Kyaggwe, the girls went out to 'visit the bush' and it was here that he noticed he urinated through a penis protruding through his vagina, while the rest had normal vaginas.

The pressure of trying to be a real girl made him take hormonal pills and other herbal concoctions which he bathed and drank. When these did not seem to work, Kaggwa sought refuge in the school chapel where he prayed, hoping that God would answer his prayer to become all-woman.

When the mounting pressure seemed to go nowhere, Kaggwa left Gayaza High School for Makerere High, a mixed school for his A-level. It took lots of physical and psychological effort to change from Juliet to Julius - complete with surgery and hormone treatments to get proper male genitalia and lose the boobs and vagina.

Today Julius is married with two children and the director of Support Initiative for People with Atypical Sex Development (SIPD) located in Lubaga-Wakaliga. SIPD ensures that the rights of intersex persons are recognised and respected.

Demystifying intersex conditions:

After watching Kaggwa's story, Kanyesigye called Tibaleka for help.

"She told me that my life would never be the same and took me to Nsambya hospital for hormonal tests, but my [nurse] cousin instead complained about my decision," she recalls. "I tried to kill myself."

However, Kanyesigye continued in her quest for help and this brought her to Kibuli hospital in 2010 where a team of Egyptian surgeons were visiting. Although she was offered free surgery at Ain Shams University hospital in Egypt, she had to fund her travel and upkeep, money she did not have.

Doctors at Nsambya offered her Premarin pills (these have conjugated estrogen) to help her develop breasts. Kanyesigye now has small breasts on her chest and is receiving counselling at SIPD. When Suzan Nansamba, a resident of Mukono, in June 2001 gave birth to Allan Mwebe, all seemed a rosy affair. However, two days after, she noticed that her son did not have a penis and was instead passing urine like girls. He is afflicted with penile agenesis, an intersex condition where one has no penis.

Like Mwebe, an estimated one in 2,000 babies (www.pflagdetroit.org) are born with a reproductive or sexual anatomy and/or chromosome pattern that doesn't seem to fit typical definitions of male or female.

Dr Reuben Kiggundu, a medical officer at Mulago hospital, describes intersex as a medical condition where one cannot determine their sex due to chromosomal or atomical (physical) alterations. It can also refer to someone who has one ovary and one testicle, or someone whose chromosomes are, say, XXYX instead of XX for a male or XY for a female.

Tom Makumbi, the programme officer at SIPD, says intersex conditions manifest in more than 30 forms including CAH, Klinefelter's Syndrome (People with this condition are usually raised as males and have breast development, low androgen production and small testes and Vaginal Agenesis - no vagina.

"One myth I want to [set straight] is that intersex people are not hermaphrodites; a hermaphrodite will depict complete sets of the male and female genitalia but for the intersex person, it's ambiguous," Makumbi says.

He adds that many intersex persons have dropped out of school because society does not recognize them and discriminates against them and many are killed at birth. In a research conducted by SIPD, it was identified that many cases of intersex babies are from eastern Uganda.

Makumbi appeals to government to establish a central registry where babies born as intersex can be recorded and avail information to create awareness. So far 302 people from 25 Ugandan districts have been helped by SIPD since its inception in 2008.

A call to help:

Although she has developed small breast mounds on her chest, Kanyesigye is fundraising for money for corrective surgery in Egypt. She can be reached on 0703767489/0783806250. She has a fundraising account no. 3620001994 in her names in Centenary bank.

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