When your child is neither Boy nor Girl

When Osoro Omugusi was born more than 30 years ago, his parents could not agree on whether he was a boy or a girl.

He had ambiguous genitalia. Consequently, no notification of birth was made since such a notification has checkboxes of M/F none to which Osoro fitted. The attendant medical personnel offered no insight either.

He got no birth certificate and dropped out of lower primary school owing to unbearable stigma from classmates and peers. His parents gave him a boy’s name and upon attaining puberty, the parents took him to hospital to undergo the rite of passage. The doctors chased him away owing to the fact that he had ambiguous genitalia.

Later on, he could not get a national identity card and consequently, could not enjoy his civil rights as a citizen of Kenya. Efforts to get employment did not yield much fruit and he resorted to becoming a dependant. In a bid to fulfil the urge to form a family, he attempted to get into relationships with girls which always ended whenever the girlfriends learnt of the genital ambiguity. Eventually, his relatives got him a lady and children who Osoro proceeded to treat as family. No wedding or adoption proceedings ever took place. Out of the pressure of lack of employment, Osoro ended up in conflict with the law. He was charged in court and sentenced to prison service in a male prison.

On the first day of prison stripping, the wardens discovered Osoro had an undeveloped female organ. He became the object of ridicule, harassment and sexual molestation by curious inmates. Does this amount to discrimination based on sex? Should Osoro sue the state for the continued breach of his fundamental rights and freedoms due to the discrimination he has been getting on the basis of his ‘sex’ which Kenyan law does not recognize?

Osoro’s story is not new in Kenya. According to CRADLE, a leading child rights organization in Kenya, no one knows exactly how many children are born with intersex conditions. This is because of the secrecy and deception surrounding it, and also because there is no concrete boundaries to the definition of “intersex.” It is nonetheless estimated that about one in 2,000 children, or five children per day in the United States, are born visibly intersex, prompting early (and often misguided) intervention of surgery and hormonal prescriptions. No data exists in Kenya on intersex births but Victoria Wambua, a legal officer with CREAW, a leading women rights organization in Kenya, states that mothers faced with intersex births face a big dilemma in integrating their child into a community which doesn’t recognize any other gender other than M/F.

Intersex in humans refers to intermediate or atypical combinations of physical features that usually distinguish female from male. This is usually understood to be congenital (a condition which a person is born with), involving genetic anomalies, such as diversion from typical XX-female or XY-male presentations. An intersex individual may have biological characteristics of both male and female sexes.

For such a long time, the traditional treatment has been for the doctors to decide what sex your baby should be, and then surgically modify your child to resemble that sex. But the recent overwhelming suits by ‘corrected children’ against their parents in the U.S., Britain and Australia has seen courts siding with the children sending a call for revision of this traditional correction surgery treatment, which is widely practiced in Kenya.

The law in Kenya offers no legal recognition to intersexuality. There is little public discussion on the issue and such intersex persons have been subject to stigmatization, discrimination and deplorable indignity. It is this legal vacuum or omission by legislators (since historically intersexuals have always existed) that is presently before the courts. This case has forced many in the legal fraternity and the larger society to confront some basic issues about sexual identity, birth anomalies and what rights parents have in physically shaping their kids. Will a child grow up to enjoy a better life if he or she is saved from the trials of maturing in a funny-looking body? Or will that child be better off if he or she is loved and accepted, at least at home, exactly as he or she is?

Proponents of correctional surgery argue that intersex births are a social emergency that call for urgent action (read immediate surgery). They argue that it is the parents who will suffer stigma for having such children with ‘disorders of sex development’. It therefore follows that parents must have full rights to consent for correctional surgery on behalf of the child who has no legal capacity to consent. Further, they propound that such early action serves to salvage the child from future stigmatization based on ambiguous genitalia.

On the flip side, terming the above treatment as ‘non-therapeutic genital altering surgery on the non-consenting legally incompetent minor child’, child rights activists argue that intersex children have a right to protection of the integrity of their body, even though it may not conform to a male or female norm. Such children similarly have a right to protection from unnecessary investigation and treatment.

It is suggested that intersexuality is not a life-threatening illness, except perhaps in rare cases. So immediate surgery is usually not required. It is the intersex child, and not the parents, who is the patient. It is the intersex child, and not the parents, who must dwell within her/his body. It is the intersex child, and not the parents, who legally must decide about body-altering irreversible surgery when she is of age.

From the foregoing argument, parental discretion is not absolute. Professionals must therefore maintain an independent obligation to protect the child’s interests. Moreover, they state that parent rights are limited to the granting of permission for diagnosis and treatment. The physician responsibilities are to the child patient and patient care should be based on the child’s needs and not the needs of someone else.

With confusing arguments, a legal vacuum in Kenya, impending suits and little public debate, what should a parent faced with an intersex child do in Kenya?

I submit that medicine cannot determine a baby’s “true sex.” For example, chromosomes do not necessarily dictate one’s gender identity. This is obvious from the fact that most people born with androgen insensitivity syndrome live as women despite having XY chromosomes.

We won’t know the child’s gender until she or he is old enough to communicate to us. Having no legal guide, and possible suits due to correctional surgery, I recommend that the child be assigned a gender based on our best prediction, and allow her or him to determine the sex for herself or himself once she or he is old enough to do so. Irreversible surgery on infants should be avoided in order to give them the widest range of choices when they are older. Performing surgery will not eliminate the possibility that our prediction turns out to be wrong.

Surgery is just part of a larger pattern of how intersex children are treated. It is also important to stop shame, secrecy and isolation that are socially and medically imposed on children born with intersex conditions under the theory that the child is better off if they didn’t hear anything about it. Therefore, it’s not enough to simply stop the surgery. We need to replace it with social and psychological support as well as open and honest communication.

Do not let the doctors operate on your child unless there is a real medical emergency, such as a blocked urethra or other urinary or bowel trouble. Make sure that they understand your position on intersexuality before your child is born, so that less trouble will arise. In some cases that we know of, doctors operated on children anyway without the knowledge or consent of the parents. Don’t let this happen! Your child’s genital tissue must remain unmarred until they are more physically mature.

As a parent, you need to make your own decision regarding how your baby is to be raised. Research shows that intersexuals, are generally able to decide what sex they feel themselves to be by puberty. This means that you as the parent, not doctors, can and should make the final decision about your baby’s sex… as long as you remember that any choice you make might turn out to be the wrong one. There is no scientific evidence for the medical community’s claim that humans will be comfortable in whatever sex or gender they are raised. Intersexuals are not blank slates at birth. They simply do not have the means to make their wishes known in infancy. Although consulting with the doctors involved can give you useful information to help you with your choices. As soon as your child is old enough to understand, explain things as clearly and simply as possible. Your child should never feel ashamed of his/her medical condition. Many intersex children suffer terribly from the secrecy and shame surrounding their intersexuality. Their parents either refuse to explain why they put them through painful surgery, feed them hormones at puberty, or teach them that it is shameful so they are never to speak of it. Remember that most of these children will later figure it out anyway. Honesty is the best policy, and the only healthy basis for a parent-child relationship. This is based on mutual respect, trust and love, which is essential for imparting the child a solid foundation for leading an adult life that is not impeded by physical and mental health issues.

Do not allow your child to be used as a guinea pig or educational display. Learn as much as you can about your child’s condition. Do not let yourself be made to feel stupid, incompetent, or incapable of making decisions. When your child is approaching puberty, it might be best to carefully discuss the possibilities and what they will entail. This might work best on the framework of family therapy—preferably with a gender specialist. Your child must be the final arbiter of what is or is not done to his/her body. Your job is to discover and advocate for his/her choice.

The parent of an intersexual has been blessed with a very special and gifted child who requires a lot of patience and love. You will need a lot of courage to stand up for your child’s real needs. But you are the only advocates your baby has who really care for them.

It is hoped that in reading this, you will be able to make decisions about your child’s treatment that truly work for their well-being and not some abstract illusion of social “normality”.

From Osoro’s story above, an intersex is protected under Section 84 of our current constitution which offers protection for all individuals from discrimination on the basis of their sex. This can be construed broadly to include intersexuals. The proposed draft constitution offers nothing new on the same subject. In the current constitution, an intersexual can therefore go to the high court seeking orders, writs (formal written orders issued by a court) and such directions to safeguard their constitutional right.

*Not real name

The writer is a lawyer with the Kenya Human Rights Commission.

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