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In Uganda, offering support for those born with indeterminate sex

Kaggwa - smallWhen most adolescent boys in his Ugandan village were lobbing soccer balls, Julius Kaggwa was sidelined by an unusual phenomenon: He began to develop the breasts of a girl. His mother took this as a sign from the spirits that young Julius was intended to be female and she began to send him to school in girls’ dresses. The boy was mortified and became afraid to show his face in public. Life became so unbearable that he contemplated suicide.

Today, Kaggwa, 44, is the founder and director of Support Initiative for People with Congenital Disorders, the first group of its kind in East Africa to serve the intersex population. Intersex individuals are those born with indeterminate sex because of hormonal, physiologic or other medical anomalies.

In Uganda, where children are cherished and celebrated by the community in the month after birth, he said the arrival of an intersex child is a mother’s “nightmare.”

“Our work starts in the delivery ward where children are mutilated or their lives are terminated,” he said. The mother may be reviled by the community: “There are people who will say, ‘What is the use of this woman?’ So the mother will kill that child to avoid the stigma.”

I met Kaggwa in February at the group’s headquarters in Kampala, Uganda’s bustling capital city. I had traveled to the East African country as a Global Justice Fellow with the American Jewish World Service, an international organization that aims to end poverty and support human rights in the developing world. Fifteen of us fellows spent nine days in Uganda last month meeting with organizations that support women, girls and members of the LGBTI community.

We headed down a long dirt road to the headquarters for SIPD, located in a building that remained unidentified for security reasons. Since the Ugandan Parliament passed a harsh anti-gay law in December, there had been a rise in arrests, beatings and public assaults on members of the LGBTI community, and there were concerns that the anti-gay sentiment would spill over into the organization.

The group focuses on changing cultural attitudes so that intersex children are more accepted in the community. SIPD also facilitates referrals to a hospital in Kampala where they can receive appropriate medical treatment, the only site in Uganda where physicians are equipped to deal with their specialized medical problems, Kaggwa said.

The group also does educational outreach in schools so that intersex youngsters don’t experience the kind of stigma and emotional trauma that he did.

“So they don’t have to kill themselves, drop out of school or sell their souls to seek asylum in other countries,” he said.

The organization has worked with some 700 intersex individuals in the 25 districts in Uganda where they operate (the country has 112 administrative districts).

Kaggwa has testified before the U.S. Congress on the issue and worked with the Ministry of Health in Uganda, which has been supportive of his work. Unlike homosexuality, which Ugandan officials have called a form of learned behavior, intersex conditions are recognized as a medical issue, he said.

Kaggwa’s own life was saved by the benevolence of his church pastor, who provided support and guidance during dark times, he said. He ultimately obtained medical treatment and today is the happily married father of three.

His dream now is to open a full-scale clinic at the group’s Kampala headquarters, where intersex individuals can obtain counseling and a full range of medical services.

Previously: Stanford author explores struggles of intersex individuals, their families and doctors and Karkazis on intersex people
Photo of Kaggwa by Ellen Greenblatt

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