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February 01, 2022
Why intersex athlete Annet Negesa is telling her story
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In 2012, Annet Negesa qualified to represent Uganda in the 800-meter run at the London Olympics. But just weeks before the Games, she got a call from her agent. A test had shown high levels of naturally occurring testosterone in her blood. She would not be allowed to compete. In an attempt to restore her eligibility, Annet underwent a serious, irreversible surgery that derailed her career and left her with serious medical side effects. Now, Annet is sharing her story to try to help other women avoid the same fate.
Full Transcript
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IBTIHAJ MUHAMMAD, HOST:
In 2011, Annet Negesa was one of the most promising young runners in Uganda.
NEWSCLIP WITH MAN SPEAKING:
Her emergence onto the world scene has given sports fans in Uganda hope that their country could have another female success story…
IBTIHAJ: As the 2012 Olympics approached, Annet set a new Ugandan record in the 800. But before she could compete in London, Annet’s career was derailed because of high testosterone levels. And if this sounds like a story about performance-enhancing drugs, it’s definitely not.
INDIAN WOMAN:
This is high testosterone, which is naturally occurring high testosterone. This is how they are born.
IBTIHAJ: Annet is not alone. Five female middle-distance runners were banned from participating in the Tokyo Olympics for the same reason. Three of them had been Olympic medal winners in Rio.
From Foreign Policy and Doha Debates, this is The Long Game, a podcast about the power of sports to change the world. I’m your host, Ibtihaj Muhammad.
Fear and shame have kept many athletes from speaking out about the guidelines affecting women with naturally high testosterone. But after seven years of silence and isolation, Annet Negesa found her voice. Sheeba Joseph has the story.
UGANDAN WOMAN:
Running was just, like, my life.
SHEEBA JOSEPH:
This is Annet Negesa. She grew up in a small village in Uganda. She started running when she was in grade four. By the time she was in grade six, Annet was running against older kids, and she realized that not only did she love running, she was good at it. Really good.
ANNET NEGESA: By that time, I was so small, I was too tiny. And I was running with the big people.
SHEEBA: People started taking notice. Annet received a scholarship to attend King of Kings Boarding School, which is a huge deal in Uganda, where four out of five girls don’t get to attend high school at all.
ANNET: So there were no need of telling me to go for training. I was telling myself to go for training, because I knew it’s — this is now my life.
SHEEBA: When she was just 19 years old, a documentary film crew visited Annet at her school.
DOCUMENTARY CLIP WITH BRITISH MAN SPEAKING:
The remarkable thing about Annet’s success to date is that she’s achieved it without a regular coach or structured training program. A huge natural talent, she’s nearing the end of her education and is looking forward to committing completely to the sport.
SHEEBA: Annet spoke through a translator.
[DOCUMENTARY CLIP OF ANNET SPEAKING IN SWAHILI]
DOCUMENTARY CLIP WITH FEMALE TRANSLATOR SPEAKING:
Whatever happens, I know that I will be training every hour I can for the Olympics next year. Everything I’m doing now will help me be ready for London. I just hope I continue to get faster, so I can go to the Olympic Games as an athlete to fear.
SHEEBA: In 2011, Annet was named Uganda’s athlete of the year. And in May 2012, Annet won a bronze medal at a meet in the Netherlands. That result qualified her for the London Olympics. But only a few weeks before flying out to London, Annet received a phone call that changed everything.
ANNET: My manager told me, “You know what? You can’t be allowed to go for that competition.”
SHEEBA: Annet’s manager told her that blood tests showed high levels of testosterone. Because of that, she wouldn’t be allowed to compete at the London Olympics. Annet was devastated — and confused. She wasn’t being accused of taking performance-enhancing drugs. She was being told that the natural levels of testosterone in her blood were too high.
Since the 1940s, women have had to prove that they were women just so they could compete. First, they were asked to provide identity cards called “certificates of femininity.” Later, women were subjected to nude parades, where a panel of mainly white male judges would decide whether they belonged in the women’s category.
AMERICAN WOMAN:
As you can imagine, there was a great deal of objection to this, right? Degrading, dehumanizing to women, objectifying.
SHEEBA: That’s Katrina Karkazis. She’s a bioethicist and cultural anthropologist at Amherst College.
KATRINA KARKAZIS: And so they quickly got rid of that, moved to the karyotyping where you test for someone’s chromosomes, then moved to genetic testing.
SHEEBA: But no matter what tests they use, there was always a problem.
KATRINA: The problem is not with the tests themselves. They accurately test for whatever it is that one is testing for. The problem was the underlying idea that any singular physiological trait was enough to classify someone as male or female so that you could rely on chromosomes alone or a particular gene or genitalia alone to classify. And what clinicians knew at that point, and were troubled by, is that this would always unfairly exclude some women. We all have a range of sex traits. There are at least six, and actually more — closer to nine. None of them are binary, and they vary between individuals. And so the idea was that you couldn’t do this fairly.
SHEEBA: So in the late 1990s, the International Olympic Committee, or IOC, decided they would no longer have mandatory testing of all women, but they left themselves a carve-out.
KATRINA: They had a reserve clause which said that if they deemed a woman suspicious, they could test her.
SHEEBA: And that’s what happened to Annet. Blood samples were taken at the IAAF World Championships in South Korea in August of 2011. But Annet wasn’t told about her high testosterone levels until July of the following year, after she qualified for the Olympics.
INDIAN WOMAN:
If the federation had the samples from August 2011, why did they wait that long before contacting Annet? Is it just then to stop her from competing in a big tournament like the Olympics?
SHEEBA: That’s athletes’ rights activists and scholar Payoshni Mitra. For over a decade, she has worked with female athletes with naturally high testosterone.
PAYOSHNI MITRA: So you see what the federation is focused on. The federation is focused on the podium. It’s about stopping athletes from getting to that podium — and the Olympics podium, obviously, is the most important one.
SHEEBA: We asked the federation why there was a delay between Annet’s samples being taken in August of 2011 and the investigation that began in June of 2012. But they did not directly answer our question.
Caster Semenya is probably the most famous runner to be caught up in these regulations. She burst onto the scene at the 2009 World Championships in Berlin.
AUSTRALIAN WOMAN:
Caster was the hot favorite, so she was this up-and-coming junior athlete.
SHEEBA: That’s Madeleine Pape. She represented Australia in the 800 meters at the 2008 Olympics and was expected to do well in Berlin.
MADELEINE PAPE: So we knew that there was this, this superstar young athlete coming in who was a favorite for the, for the medal. But beyond that, I didn’t hear anything else being said about her, just that she was exceptional, you know? So I was intimidated when I drew the same heat.
SHEEBA: Madeleine remembers seeing Caster on the warmup track before the race.
MADELEINE: Semenya has made no secret of presenting herself in kind of a tomboy, nonconforming sort of way, so certainly, I saw that. But it didn’t raise red flags for me.
NEWSCLIP WITH MALE ANNOUNCER SPEAKING:
Set.
[NOISE OF STARTER PISTOL FIRING; CROWD CHEERING]
MADELEINE: So the race happened. I raced poorly. I was really, really disappointed with how I — with how I ran, because I knew I was in good enough shape to make the semifinals.
SHEEBA: But soon, rumors started to swirl about the young runner from South Africa.
MADELEINE: Perhaps she had an unfair advantage relative to other athletes in the female category. Perhaps her body actually was different to other women, and she, she didn’t really fit in the female category. And I remember in some ways thinking, “Oh, OK, well, you put two and two together, and it makes sense, right?”
SHEEBA: The federation — then called the IAAF, but now known as World Athletics — announced that they were going to conduct an investigation into Caster’s biological makeup.
MADELEINE: I mean, they publicly declared this. So you can imagine the kind of reception that Semenya had when she won gold. I mean, it wasn’t that you could hear a pin drop, but it was a really muted reaction in that stadium. And I think people were just kind of confused.
NEWSCLIP WITH BRITISH MAN SPEAKING OVER NOISY CROWD:
This athlete goes on a lap of honor. 1:55.45. Smashing the national record, of course. An amazing performance. And we’ll be hearing a lot more of that, no doubt.
MADELEINE: I didn’t really know how to react. Like, do we celebrate this athlete? Do we — what? What do we make of this situation? You know, I mean, World Athletics certainly threw Semenya under the bus by making that announcement the night before the final.
PAYOSHNI: For the longest time, athletes with high testosterone were told that they were cheaters. They were made to feel as if they were cheating, but they have never doped.
SHEEBA: That’s athletes’ rights activist Payoshni Mitra again.
PAYOSHNI: This has happened over and over again that athletes have been made to feel inadequate, and athletes have been made to feel that they have been cheating the system, which is not true.
SHEEBA: Many of these athletes have what’s called differences in sex development, which cause their bodies to produce unusually high levels of testosterone, or “high T.”
PAYOSHNI: This is high testosterone, which is naturally occurring high testosterone. So there is nothing to hide about it. There’s nothing to be ashamed about it. This is how they are born.
SHEEBA: Some of these athletes now identify as intersex. Many do not, but they all have one thing in common.
PAYOSHNI: All of these women are assigned female sex at birth, brought up as girls, identify as women all their lives.
SHEEBA: When Annet Negesa’s manager called a few weeks before London, he told her the doctors from the federation asked her to go to France for additional testing to keep her Olympic dreams alive.
KATRINA: She was alone in a lot of her travel to these various visits.
SHEEBA: Bioethicist Katrina Karkazis, again.
KATRINA: She had very little that had been explained to her, either by the doctors in her country, which was Uganda, or by the doctors who performed some of the investigations, which were the IAAF-affiliated physicians in Nice.
SHEEBA: Annet doesn’t speak French, and she says she didn’t really understand what the doctors were telling her.
ANNET: They said, “You need to get medication. We need to lower your testosterone levels.”
SHEEBA: According to the federation’s own records, the IAAF’s then-medical manager officially informed Annet of her ineligibility on July 27, 2012. But Annet was told that she could reapply after undergoing medical treatment to lower her testosterone levels. With Annet’s permission, the federation forwarded her medical records from the examination in Nice to a doctor they recommended in Kampala, Uganda. Annet returned home and waited to undergo treatment.
ANNET: I had one decision, of doing what they wanted, because I love this sport.
SHEEBA: A few months later, in November, Annet was taken to a hospital in Kampala. She thought she had agreed to a simple procedure, like an injection or medicine. But after waking up in pain, and with scars under her belly, she realized something drastically different had happened to her. Annet would later learn that she had been born with internal testes. She had received a gonadectomy, an irreversible procedure that completely altered her body.
In their email to us, the federation says they did not recommend a specific course of treatment, and the doctor who performed the surgery has not commented publicly. But Annet’s medical records indicate he was waiting for further guidance from the federation before starting Annet on hormone therapy.
IBTIHAJ: You’re listening to The Long Game from Foreign Policy and Doha Debates. I’m your host, Ibtihaj Muhammad.
[SUSPENSEFUL PIANO MUSIC]
IBTIHAJ: And now back to our story about Ugandan runner Annet Negesa.
SHEEBA: Annet tried to go back to the life she had before surgery, attending classes at university, but terrible headaches forced her to return home instead. Her joints ached, and her body felt weak. She didn’t know how to explain to her mother what had happened to her. Annet received no follow-up therapy or treatment after the surgery. She was neglected and alone.
KATRINA: When you lower testosterone, whether it’s pharmacologically or surgically, it has a range of physiological effects.
SHEEBA: That’s bioethicist Katrina Karkazis again.
KATRINA: So it messes with the endocrine system, which is constantly trying to stay in a kind of harmonious balance. It can affect mood. It can mess with liver metabolism. It can create fatigue. And all of these are devastating for an elite athlete. And with Annet, she experienced incredible fatigue and nausea, and she didn’t understand why. Because, again, no one had explained to her that it was important to have hormone supplementation afterwards, just for simple daily living, let alone anything else.
SHEEBA: A few months after her surgery, Annet attempted to return to her sport and train again. She was in so much pain, and she wasn’t able to regain her prior fitness levels.
In the years immediately following Annet’s surgery, India’s Dutee Chand and South Africa’s Caster Semenya fought against regulations that required them to lower their natural testosterone levels in order to compete. They took their cases to court and won — for a while. In 2016, Caster won her second consecutive Olympic gold medal in the women’s 800 meters.
NEWSCLIP WITH BRITISH MAN SPEAKING OVER NOISY CROWD:
And Caster Semenya is going to do what most people thought she would do in the 800, and she runs away and wins it brilliantly!
SHEEBA: Caster was joined on the podium by Francine Niyonsaba from Burundi and Margaret Wambui from Kenya. Three years later, World Athletics banned women whose testosterone exceeded the limit from racing in middle-distance events, which included the 400 meters to the mile. As a result, five athletes were banned from competing in the Tokyo Olympics, including all three of the 800-meter medal-winners from Rio.
Running was not only Annet’s passion. For her, running meant so much more.
KATRINA: One of the things I think that people from the global north may not be familiar with is the extent to which sport is a route to economic betterment in the global south.
SHEEBA: Athletes all over the world use sport as a pathway to a better life. But major events pay appearance fees to elite runners, and that money can go far in a place like Uganda, where the cost of living is low. Long before she even qualified for the Olympics, Annet was earning enough money to support her entire family.
KATRINA: One needn’t have incredible prize money in order to really have a tremendous impact on their own life and that of their family.
SHEEBA: Annet lost her university scholarship. But that wasn’t all she lost. She lost the support of her country. She lost her community of fellow athletes, and she struggled to find a job. People were questioning whether she was a woman or a man, which felt incredibly discouraging for her.
ANNET: They were seeing me like an abnormal person, like, if you go looking for a job. So it was really, really hard.
SHEEBA: For seven years, Annet was alone and sick. She wasn’t receiving the medical care required after the surgery. She was isolated, thinking she was the only person who was like this.
ANNET: I didn’t have anyone to talk to, even my parents. No one.
SHEEBA: Athletes’ rights activist Payoshni Mitra tries to reach out whenever she hears about a female athlete who has been flagged for naturally high testosterone levels, but she has to know about them first. Caster Semenya’s story made international headlines, but many high T athletes like Annet simply disappear. Their medical records are shielded behind confidentiality rules.
PAYOSHNI: So I could never reach out to Annet at the time, and she probably needed me the most.
SHEEBA: But Payoshni wonders: Who are those rules actually protecting?
PAYOSHNI: The federations can investigate, make these athletes undergo medical assessment, extremely invasive medical assessments, and after that, what happens to this woman? She disappears, in as far as the federation is concerned. She doesn’t really disappear. What is disappearing is the fact that the federation has caused such harm. So the confidentiality clause was protecting the federation for seven years. Not Annet.
SHEEBA: Seven years after her surgery, Annet was still struggling. She had managed to find a few odd jobs — painting houses, building a cow shed. She was barely making any money. That’s when another athlete introduced Annet Negesa to Payoshni Mitra. The two started talking.
PAYOSHNI: And then, eventually, I got a chance to go and meet her. She broke down several times, because that was the first time she was talking about it.
SHEEBA: Payoshni helped Annet understand she has nothing to hide.
ANNET: She’s the lady who gave me courage and strength.
SHEEBA: With that courage and strength, Annet decided to share her story for the first time in 2019. She spoke to a team of German documentary filmmakers.
[DOCUMENTARY CLIP WITH MAN SPEAKING IN GERMAN]
Diese Bilder sind nicht Lara, sondern Annet Negesa. [Translation: These pictures are not those of Lara, but of Annet Negesa.]
SHEEBA: It wasn’t the first time a female athlete spoke out about having high T.
PAYOSHNI: Dutee Chand and Caster Semenya were already speaking and, you know, quite famous, and a lot of people got to know about them and their struggle and their resistance. Annet adds to that story, because both of them got enough support at the right time so that they could resist severe, kind of, medical steps.
SHEEBA: In June of 2013, a clinical study revealed that four women athletes had undergone irreversible medical surgeries to reduce their testosterone levels, but their names were not made public.
PAYOSHNI: We didn’t know any athlete before who said, “Well, I went through that. I went through all of that.” So that was extremely important, because Annet came out and spoke about how harmful these regulations are.
SHEEBA: Payoshni calls Annet a whistleblower. She says Annet helped focus the attention away from the bodies of female athletes and onto the actions of the federation.
PAYOSHNI: What we are doing today is criticizing the organization and what they did. So we are reversing that scrutiny today, and that is possible because Annet has openly spoken about what she went through in 2012.
SHEEBA: Slowly, over time, attitudes toward athletes with high T are changing. Remember Madeleine Pape, the Australian runner who lost to Caster Semenya at the 2009 World Championships in Berlin? Madeleine retired from running and earned a Ph.D. in sociology. She’s now a postdoctoral researcher at the University of Lausanne in Switzerland, where she studies gender equity in sport. Madeleine has a deep admiration for Annet’s decision to come forward.
MADELEINE: It’s clear when Annet talks that people really stop and listen. Because for a long time, this issue has been underground, and we haven’t actually had the opportunity to hear first-hand, you know, the voices of the women who’ve been affected. And it’s not Annet’s job to do this. I think it’s actually a really, really big burden for her to have to teach us about the kinds of effects that these regulations have had on her body and on her life. I have so much admiration for, for her stepping up and being prepared to put herself forward in that way, and claim that and say, “Yes, I am someone who has testosterone above the limit. And yes, I have had my life turned upside down by these regulations.” That’s a really, really brave — really, really brave decision to make. And I just wish that she didn’t have to do that in order for us to better appreciate how these rules affect people’s lives.
SHEEBA: In November of 2021, the IOC issued a new framework for inclusion and nondiscrimination on the basis of gender identity and differences in sex development. Annet and more than 250 athletes and activists worked with the IOC to develop it. But while the framework was seen as a cause for hope among athletes like Annet, World Athletics president Seb Coe told reporters that the federation sees no need to alter its regulations in order to comply.
SEBASTIAN (SEB) COE:
Look, I’m — I read the, the framework document. It’s very much in alignment with everything that we believe very strongly, in the principle of, of, of fair, fair play, open competition. Look, the broader point I need to make here is that our regulations will remain in place.
SHEEBA: And so Annet continues using her voice to bring change to the system. She hopes that in sharing her story, she can prevent another female athlete from undergoing an irreversible surgery like the one she had.
ANNET: There are very many other athletes who are like me. I don’t want them also to go such situation which I went through. That’s one of the reasons why I came out and talked about it.
SHEEBA: And athletes’ rights activist Payoshni Mitra says not all of Annet’s efforts are visible.
PAYOSHNI: She does a lot of work behind the scenes.
SHEEBA: Whenever Payoshni meets other women facing pressure to permanently alter their bodies to comply with the regulations, she offers to put them in touch with Annet.
PAYOSHNI: This is such a personal, physical situation that they were dealing with — such a personal thing. And they were always told that you have to not talk about it, hide it, pretend you have an injury, et cetera. But then if another athlete comes and tells them, ‘Well, I was in the same position as you were,” it’s really helpful. And Annet does that a lot for me. She speaks to them individually, and she stays in touch. She asks me later, “How is she doing?” Or she messages them on WhatsApp. So there is that ongoing kind of willingness to provide support to these young athletes. She knows that she did not get it herself, but she’s so dedicated, and she doesn’t want this to happen to anyone else. And that’s important. That’s a true activist.
SHEEBA: We asked Annet what she hopes people will take away from her story and what changes she hopes to see for high T athletes in the future.
ANNET: What I can say about that is, like, let them take the people as they were, as they were born, as they were created. You are not God. God is the one who created that person. And even the mom who produce that kid, she didn’t know that she is producing such a kind of kid. Accept only the Almighty, who knows what he creates. So let them take us as we are.
SHEEBA: Annet is now receiving the medical care she needs and has even returned to her training in hopes of pursuing her Olympic gold. After all she’s endured, Annet is rewriting her story to be one of strength, perseverance and confidence.
ANNET: I’m Negesa Annet, from Uganda. 800 meters, African champion, 2011. And I’m who I am, and I’m proud of myself.
[TRIUMPHANT MUSIC]
IBTIHAJ: That’s it for this episode of The Long Game. I’m your host, Ibtihaj Muhammad. The Long Game is a co-production of Foreign Policy and Doha Debates. This episode was produced by Sheeba Joseph and Karen Given, with help from Kim Buikema, Joe Hawthorne, Dan Ephron, Rob Sachs, Japhet Weeks, Amjad Atallah and Jigar Mehta. To hear more about Annet, check out Out There, an award-winning podcast that explores big questions through intimate stories outdoors. Annet is featured in an episode that dropped on November 18th called, “In the Name of Fairness.” Find it wherever you listen to podcasts. Make sure to follow us on Apple or your favorite podcast app, and please leave us a review. To learn more, subscribe to Foreign Policy, a global magazine of news and ideas, or visit Doha Debates, a production of Qatar Foundation.
Next week on the podcast: Since becoming an environmental activist, American football player Ovie Mughelli has been invited to a lot of lectures, conferences, and fundraising events. He’s often the only Black person in the room.
OVIE MUGHELLI:
We have a global problem. We need a global solution. And I wanted to bring more people who look like me who are dealing with the negative effects of the environment, climate change, global warming, the whole thing. I wanted them to be part of the solution.
IBTIHAJ: That’s next week, on The Long Game.
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