Frequently Asked Questions
This is a list of answers to frequently asked questions (FAQs) that will give you some important information.
A. GENERAL QUESTIONS
Hermaphrodite was a term that was commonly used in past to describe intersex people. The term was often used negatively, and many intersexed activists feel it dehumaning. Illustrations of hermaphrodites usually depicted people with both female and male organs. In fact, intersexed people are NOT born with two complete sets of genitalia BUT RATHER with ambiguous sex characteristics that are not clearly female or male. “Intersexed” is a general term now used as a non-discriminatory alternative to “hermaphrodite”.
It is believed that the incidence of DSD or intersexuality in Uganda is more common than generally acknowledged. However, there has been no formal research done and therefore no definite statistics available on the subject.
DSD or intersexuality can be caused by a variety of biological or medical syndromes. Often doctors do not know why people are born intersexed.
The “best guess” strategy can refer to two things (bet guess surgical strategy and best guess non-surgical strategy) a gender or sex determination made based on what is considered to be the most appropriate sex of rearing for the intersex child.
4 (a) “Best guess” surgical strategy
The best guess surgical strategy involves using genetic (girl or boy) an intersex child will most likely feel most comfortable in. This strategy usually also involves a tape measure test of the infant’s genitals. Once the tests are performed doctors choose a gender for the intersex child to be raised in and then surgery is performed on the intersex infant’s external genitalia (outside sex organs) to make it physically look either male or female. Strategy is NOT 100% accurate and many times an intersex child may choose to change their gender at puberty (when they are a teenager). Surgery is usually irreversible and it does not give intersex person a choice. Many intersex people who have had nonconsensual surgery performed on their genitals without their approval have many emotional and physical scars. It is important NOT TO perform surgery on an intersex infant’s or child’s genitalia until the child is old enough to make an informed decision.
Surgery does not need to be an option, unless the intersexed person clearly wants it, or it is needed to save the intersex person’s life or because of a real danger to health. As a human rights principle, such surgery should always be the choice of the person on whom it is done.
4 (b) “Best Guess” Non – Surgical Strategy
The best guess non-surgical strategy involves using genetic tests and historical data studies in order to determine what gender (girl or boy) an intersex child will most likely feel most comfortable in. The intersex child is then raised in that gender with the understanding that the intersex person may choose a different gender at another point of their life (possibly during teenage years).
The best guess non-surgical strategy should also go along with counselling and education for both the family and intersexed person in order to better understanding and deal with the social, cultural, and legal issues related to intersexuality.
In Uganda when an intersex person is born, the family treats the birth as a secret and isolates the child from the general public. In most cases, the mother of such a child will be frowned upon and usually superstitions loom large as families consult mediums, traditional healers, and witch doctors for a solution. In some cultures, intersex children are killed and never allowed to grow up to be adults. Women who give birth to intersex children are either considered to be witches or victims of witchcraft. Many women are abandoned by their husbands and in-laws due to news of such a birth. Most mothers of intersex children dump and abandon such children for dead in pit latrines and lonely forest areas and run from their homes for fear of possible prejudice – driven crimes towards them by the family or community members.
In Developed countries and among a few elite African families, non – consensual surgery is often performed on the genitals of the intersex infant to conform their sexual organs to either a male or female appearance. This is usually cosmetic surgery. It is very rare for any surgery to be needed to save intersexed children’s life or to protect their health.
Intersex activists the world over now advocate for a different approach. We argue that intersexed children should be raised without surgery on the basis of a non-surgical “best-guess” about the gender that will be most comfortable for the child. There should be counseling for both parents and children making it clear that being intersexed is all right. The gender role can be changed at need, depending on the development and choice of the intersexed person.
There is NO true sex. However, when an intersexed infant is born, genetic and other tests are performed in order to determine in what gender the intersexed person is likely to feel most comfortable. The history of other intersexed people with various conditions is also considered. Because tests and historical data are not 100 percent accurate in determining one’s gender it is important to note that the intersexed person may choose another gender as she or he grows up. Genital surgery cannot be reversed – it cuts off choices. This is why it is important to avoid it when it is not needed to preserve life or health.
Intersex activists are often people who were born intersexed and had unnecessary genital surgery performed on them or were the victims of harmful cultural practices. We know from first-hand experience how bad the impact of these approaches are. Stigmatizing cultural practices and medical interventions that focus on genital surgery or child murders interventions that focus on genitals surgery or child murders at birth have proven to be human rights violations and therefore wrong and harmful for the overall health of intersexed person.
Christianity: From the holy Bible, Psalm 139: 13 – 15
“For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made (or set apart). Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth.”
Islam: From the Holy Qur’an, Surah 42:49 – 50:
“To Allah belongs the dominion over the heavens and the earth. He creates what He will. He prepares for whom He wills females, and he prepares for whom He wills Males. Or He joins together the males and the females, and He makes those whom He wills to be Aqim (in a normal heterosexual way ineffectual; also barren). Indeed, He is the knowing, the powerful.
We are always welcoming intersexed people and their allies that wish to get involved. You can get involved by volunteering your time, attending our events or financially supporting us. To find out how you can be involved, contact SIPD via email or by phone.
B. QUESTIONS ASKED BY PARENTS:
The birth of a child, intersexed or not, is a wonderful event, and should be celebrated. It is Okay to feel confused and scared at first if your child is born intersexed. Fortunately, there is a lot more to know about intersexuality now than there was two decades ago. Children who are born intersexed are usually health and require no immediate cultural or medical intervention. Equipped with relevant information and support, intersexed people can live full and fulfilling lives which include creating positive sexual and social relationships with others.
If your child is born intersexed it is important to find a doctor and an intersex group or organization that has experience with intersexed children and their parents. SIPD offers support groups for parents and intersexed people in communities around Uganda. Contact us for more information. If you want help finding a doctor or support organization, or if you just need direct support or information, please contact us at SIPD either via email or by phone.
Intersexed children are usually healthy and require no hurried interventions – cultural or medical. Intersexed children can grow up to create positive social relations without having cultural rituals or genital surgery performed in the early years. Genetic tests and the history of other intersexed people with the same condition should be used to choose the best gender of rearing (girl or boy) for a child. It must be understood that this is a careful “best guess” (see what is the best guess strategy) that might not turn out to be right in the longer run. Your child may choose to change their gender at later stage in their life, and this is fine.
It is important that intersexed children and their families receive education, peer support and counseling around the issue of intersexuality. Intersexed children should be educated about their sex differentiation and be empowered to be who they are.
No, being intersexed is not painful or dangerous. Continuous monitoring of the child’s development will reveal any health concerns and only when the intersex child expresses or displays health related discomfort or concerns, should you seek medical intervention.