Dear Caster,

Like many other South Africans, I rejoiced at your world-beating performance in Berlin and was horrified at the way in which your identity has been questioned so crudely and so publicly. The malice of those who made the complaint and the leaking of details to the press strikes me, as it strikes most other South Africans, as a violation of your rights, an assault upon your dignity and a serious breach of your right to privacy. These sentiments alone are not the reason for writing to you: there is little that I could say with regard to these things which haven’t been said many times already by others who have said them far better than I could.

A large part of the saga is reports said to have been leaked to the press to the effect that the IAAF’s tests have found that you are “an hermaphrodite”, that is to say, intersexed. It should be noted that the term “hermaphrodite” is outdated, and that most intersexed activists also find it offensive because it makes the intersexed sound like mythical beings. You are said to lack a womb and ovaries and to have testes lodged internally and churning out significant amounts of testosterone. All of this is actually just hearsay, as the IAAF has pointed out. Until the IAAF releases the results of the so-called “gender identity tests” it conducted, if it releases them, all of this is speculation. Perhaps evidence suggests that you are intersexed; but it may well not. Even so, it is the possibility that you are intersexed – born with physical sexual differentiation at some level which differs from typical “male” or typical “female”, however this finds expression, which is the reason why I am writing this letter. I am intersexed and found this out around fifteen years ago. As a result, I know a lot about being intersexed and about what it is like to learn that one is intersexed. My personal experience and knowledge in this regard could help you at this difficult time, whether you are intersexed or not.

One thing needs to be put firmly to rest. I don’t know whether competitors who made the complaints about you, leading to the tests and the outrageous levels of publicity, or their trainers, have actually read the IAAF’s Gender Policy document. My guess is that they haven’t, because had they done so they would have realised that a finding that you are intersexed would be unlikely to bar you from participation in international athletic competitions under the aegis of the IAAF as a woman. On my reading, at least, this is implied by section A 6.

Intersex is an umbrella term. A friend who searched medical databases years back found around 96 syndromes which result in intersex, and I’m sure that there are many more. The major ones to consider, though, given what is being alleged with reference to you, are androgen insensitivity syndrome (AIS), congenital andrenal hyperplasia (CAH) and gonadal dysgenesis. Let me explain each of these.

In AIS, particularly in the near-complete and complete forms, the chromosomal pattern is XY, which is usually associated with a male body type. The bodies of those who are androgen insensitive, however, are unable to “read” androgens – male-making hormones like testosterone – in a way which results in the body becoming masculine. The body-type which develops is unmistakably feminine, and there is generally no body hair. It turns out that the sex glands, which are in the abdomen, are testes.

I think it most unlikely that you are affected by AIS: some of your physical characteristics suggest that your body is sensitive to testosterone, as the vast majority of women’s bodies are. This also implies, to my mind, that reports that you have been found to have fully-blown testes inside you are implausible.

In CAH, in the sense that it might affect a woman, the chromosomal type is XX, usually associated with female bodily types. However, the adrenal glands which sit on top of the kidneys churn out substances which sometimes cause the body to become masculine in type, with male-looking external genitalia, a masculine voice and a masculine figure. At a guess, this is also unlikely to affect you if there is any truth in reports that you lack a womb and ovaries because, as far as I know, those affected by CAH have a womb and ovaries. In the event that you do have a womb and ovaries, CAH is a possibility, but so is not being intersexed at all.

A third syndrome is what is called gonadal dysgenesis. In this syndrome, the sex glands themselves may be mixed. Sometimes there is one ovary and one testis, sometimes there is what is called “an ovotestis”, part-ovary and part testis, sometimes there is what is called testicular streak tissue. In the event that there is an element of truth in reports about the outcomes of the tests, this strikes me as the least unlikely of the possibilities.

Guess what? In terms of section A 6 a of the IAAF’s gender policy document, neither AIS or gonadal dysgenesis bar one from competing internationally as a woman, and they are correctly described as giving absolutely no athletic advantage. In section A 6 b, while CAH is said to give some athletic advantage, the document states unequivocally that it is not grounds for barring those affected from competing internationally as women. What this implies is that the attempts to have you barred because you are said, rightly or wrongly, to be intersexed, and the speculation that you have been determined to be intersexed and are likely to be prevented from competing in women’s events because of this is utter and complete rubbish unless the IAAF acts in flagrant violation of its own gender policy document. Intersexed or not intersexed, it is your right to compete internationally as a woman, so go out there and win many more gold medals once this “gender-testing” madness has blown over.

In the event that there is at least a little truth in reports about testes lodged inside you, the likelihood is – as I’ve noted – that it is testicular streak tissue. Something you need to know is that, at your age, there is a serious risk that such tissue could become malignant, and there is also a risk, albeit slightly lower, that testes located inside the body will develop malignancies after the coming of puberty. Please be sure to get this checked, in a way which protects your privacy. Getting this checked as soon as possible is a personal private matter, not something which should be trumpeted in the media, but it is a must-do. Testicular streak tissue or testes inside the body need to be removed for safety’s sake given your age, and this shouldn’t be deferred. Should this apply to you, make it clear that the removal of potentially malignant tissue is not a license for genital reconstruction surgery: doctors and surgeons can try to play god in this regard, but you mustn’t let them violate your sense of identity or rights. Make sure that what is done is what is really necessary for the preservation of your health and life and no more, unless you personally make a free and fully informed decision to have other things done, as is your right.

In the event that it turns out that you are indeed intersexed, you need to know that there are actually many other intersexed people out there, and that it isn’t really a “big deal”. It can be tough to discover that you are intersexed. Many of what the late Max Beck, a dear, incredibly intelligent American intersexed friend, used to call “our queer little tribe”, had what is essentially cosmetic genital surgery imposed on them as babies and children, causing physical damage and leaving psychological scars. Most were not told the truth about their bodies, and often had to fight for access to medical records, leading to confirmation that they were intersexed. For such people, there is often a sense of betrayal – that doctors and parents misled them – and that confirmation that they were intersexed was often very difficult emotionally. I was spared genital surgery as a baby and as a child (except for an attempt at circumcision when I was eight days old and shortly afterwards). Perhaps because of that, learning that I am intersexed wasn’t a “big deal” for me, even if it was for others. Those who take offence at what I am are the ones with the problem, not me. I am what I am, and as an intersexed person I enhance the richness of human diversity. This is something to celebrate, not a cause for shame. Comments you’ve made about being made as you are by God, intersexed or not, are spot-on. When I was still a believer, I once told someone that anyone who took offence at what I am was welcome to complain to God, who formed me in my mother’s womb, but would get short shrift. Be proud of what you are and of what you have already achieved, and don’t let this short period of media madness get you down.

Best wishes,

Sally Gross

http://www.intersex.org.za/