Intersex people are treated like ‘freaks of nature’ and a ‘problem’ to be solved. That needs to change

When Sean Saifa Wall was born, doctors puzzled over his birth certificate.

Wall is intersex – a term that refers to people who are born with any of a range of sex characteristics that may not fit notions of binary ‘male’ or ‘female’ bodies.

This baby was a “problem”, Wall says.

“Intersex people have been considered abnormal, we have been considered ‘freaks of nature,’” he told the Big Issue. “We disrupt the gender binary… so medicine has traditionally seen us as a ‘problem’ – and I put that in quotes – that needs to be fixed.”

In 1978, the doctors put “ambiguous” in the sex section of Wall’s birth certificate. Then, they changed their minds, ticking the ‘female’ box instead.

More than four decades on, the activist and scholar is speaking out about that decision, which changed his life forever – and about the harmful medical interventions that continue to traumatise intersex children.

Along with fellow advocates River Gallo and Alicia Roth Weigel, he is the subject of Every Body, a powerful new documentary about intersex lives.

Every Body is a new documentary about intersex people

Every Body opens with a stream of footage from gender reveal parties around the world. As pink and blue confetti fills the screen, the message of these celebrations is clear: you can be one of two things. A boy, or a girl. Pink cake, pink balloons, or blue cake, blue balloons.  

Except, of course, that’s not true.

According to Human Rights Watch, some 1.7% of children are born with some intersex traits – around the same proportion who are born twins.

Roughly one-in-2,000 babies are born with genitalia that is different enough from the ‘standard’ that doctors may consider surgery.

Such medical procedures are intended to make it easier for children to integrate into society by helping them ‘conform’ to a particular sex assignment. But their impacts can be absolutely devastating – as Wall can attest.

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Now 45, the New York native was born with male (XY) chromosomes. But he also has androgen insensitivity syndrome (AIS), which caused his testes to grow internally. Doctors removed them when he was 13.

“I was assigned female at birth, but when I was starting to experience a masculinising puberty, I was castrated and put on feminising hormones,” he says. “They changed my face, they changed my body, and I live with those effects today.”

Wall is the co-founder of the Intersex Justice Project, whose #EndIntersexSurgery campaign successfully advocated for Lurie Children’s Hospital of Chicago to become the first children’s hospital in the US to denounce genital surgeries on intersex infants.

A 2013 UN report said that surgery performed in an attempt to “fix a child’s sex” can “cause severe mental suffering.”

The medically unnecessary surgeries are not performed with informed consent. Babies and children are too young to understand what is happening, and anxious parents are likely to believe whatever doctors tell them.

“My mum gave consent, but that was under emotional duress and misinformation,” Wall says. “She trusted the goodwill of doctors who were very biased and wanted this child to be a woman.”

The surgeries are usually accompanied by stigma. People are often not told about their intersex traits, warns Human Rights Watch.

“Patterns of non-disclosure – including pressure on parents not to disclose to their children – have instilled shame and secrecy,” the organisation declared in a recent report.

Things are slowly changing, thanks to the tireless advocacy of intersex campaigners. Malta was the first country to ban unnecessary surgeries on children with sex variations in 2015;  Germany, Greece, Iceland, Spain and Portugal have followed suit.

But they are still legal in most countries.

Intersex people have a right to be angry, Wall says. He lived as a woman – the gender he was assigned by doctors at birth – until he transitioned at the age of 24. But his AIS condition makes it hard for his body to absorb testosterone.

“When I saw the limitations of testosterone, I was angry at what was taken from me, without my consent,” he says. “This is an injustice that happened to my body. This is an injustice that happens to other people.”

“Rage” is important, Wall says. But it is not the only thing that drives his advocacy.   

“My push toward activism is motivated and driven by rage… then I also think that there’s a profound love,” he explains. I have held children [with intersex variations] who have not been harmed by the medical establishment. That fuels my continued drive – to make sure that more children will not be harmed.”

Every Body will be available to rent and own on digital in the UK  from 5 February. You can watch the trailer here.