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By Rachel Savage
LONDON, April 23 (Openly) - If the coronavirus hits hardest at the margins, among the most marginalised are those born intersex, neither clearly male nor female at birth and often struggling as adults with the fallout.
The impact on intersex people can be economic, medical or emotional, health experts say, and can worsen with isolation, as the pandemic limits access to healthcare and support.
Advocates worry about a prolonged lockdown for these already-isolated people, many traumatised by childhood operations that were not needed and carried out without consent to make their genitalia more masculine or feminine.
The United Nations estimates 1.7% of people are intersex, born with atypical chromosomes or sex characteristics.
About one in every 2,000 children undergo "normalising" genital surgeries, according to InterACT, a U.S. advocacy group.
SOMETHING 'NOT RIGHT'
Jeanette Clark, who lives on her own in London, had internal testes removed at 16. She was told the surgery was necessary but not what it was or why. When she turned 50, Clark found out she was intersex after accidentally seeing her medical records.
"I've gone through absolute hell with it all," said Clark, who has Complete Androgen Insensitivity Syndrome, which leads people with male XY chromosomes to have female genitalia, but no periods or womb and internal testes instead of ovaries.
The 74-year-old had always felt there was something "not right": her bones broke easily and the pain she felt during sex led her to shun relationships after her marriage broke down.
People with CAIS, such as Clark, need to take the hormone oestrogen to protect their bones. But she was not given hormones until her 30s and has severe osteoporosis and arthritis.
Clark said an operation to correct a shoulder replacement has been postponed due to the coronavirus pandemic and that she has two thigh fractures that remain untreated. Nor can she keep up her massage and spa routine to ease all the pain.
"Obviously it's nobody's fault," she said. "But ... I feel that I'm in a similar situation as I was all those years ago, when I had no support or back up ... And that's quite hard to take.
TRAUMA OF SECRECY
Portugal and Malta have both banned unnecessary surgeries on intersex children, while the Indian state of Tamil Nadu outlawed the practice last year.
Research shows non-consensual surgery leaves intersex people at risk of physical and mental health issues and that they are likely to grow up poorer and less educated than their peers.
Attempted suicide was about four times higher among intersex people than the general population, according to a 2018 study of more than 1,000 adults in six European countries, led by the Karolinska Institutet, a Swedish medical university.
"Medical providers don't see what they're doing as traumatic," said Nikki Khanna, a San Francisco-based psychotherapist who is also intersex.
"While parts may have been necessary, the way in which it is done is what the trauma is around – the secrecy element."
A 2015 survey of 272 intersex Australians found 18% did not finish high school, against 2% of all Australians, according to research led by Tiffany Jones of Sydney's Macquarie University.
More than three-fifths earned under A$41,000 ($25,916.10), while the average Australian made almost A$60,000 that year, according to the Intersex Human Rights Association of Australia (IHRA), an advocacy group, which cited official data.
JUST SIT TIGHT
Alex David lives alone in Brisbane, Australia, and has post-traumatic stress disorder.
David, who uses the pronouns they and them - feeling neither male nor female - had genital feminisation surgery at birth, and then again several years later, but was not told until aged 17.
"Because of my situation I'm a bit worried about going to the hospital for any health issues," said the 36-year-old, who has other underlying health conditions.
"My specialist told me if I caught COVID-19, it would be potentially deadly. So I'm just having to sit tight."
Many intersex people shun healthcare altogether, which can worsen any health issues and increase the risks posed by COVID-19, health experts say.
"These people probably need access to counselling and support to help overcome those issues," said Morgan Carpenter, the co-executive director of IHRA.
For intersex people in less developed countries, the challenges of the pandemic are exacerbated since many already live in poverty, on the margins and without family support.
"In countries where they isn't really a developed healthcare system, people would tend to rely more on kinship networks for support, said Surya Monro, a professor of sociology and social policy at the University of Huddersfield.
"But that can be very problematic for these people."
James Karanja, the director of the Intersex Society of Kenya, said he is helping 10 people in Nairobi to self-isolate at home, transferring them about $100 each a month for rent, food and the hormones they need to stay healthy.
Intersex people tend to work casual day jobs that have dried up amid lockdown measures, so he expects more will need help.
Karanja also worries intersex people could be scapegoated.
"Most of the time we are seen as curses in the society, so our fear is that the community might think we are the reason for the pandemic," he said, although that fear has not come to pass yet.
"We are just taking one step at a time and (trying to) ensure that we survive," said Karanja.
($1 = 1.5820 Australian dollars)
(Reporting by Rachel Savage @rachelmsavage; Additional reporting by Matthew Lavietes; Editing by Lyndsay Griffiths and Hugo Greenhalgh. Please credit the Thomson Reuters Foundation, the charitable arm of Thomson Reuters, that covers the lives of people around the world who struggle to live freely or fairly. Visit http://news.trust.org)
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