She says she has never been happier.
At the age of six, Jewel Shuping used to stare into the sun.
For hours she would stand with the bright light burning at her eyeballs, the whiteness and glare soothing her.
But each time when she finally looked away, she was disappointed to find it had not worked: she could still see.
Jewel’s greatest wish was one she just couldn’t achieve as a little girl: becoming blind.
But as an adult, with the help of a psychologist, she has changed all that — with her psychologist deliberately pouring drain cleaner into her eyes helping Jewel realise her greatest obsession.
She is now officially blind.
What Jewel has done is shocking, confronting and so unusual it’s hard to understand. But for her, it’s finally given her happiness.
The 28-year-old from North Carolina suffers from the extremely rare condition called Body Integrity Identity Disorder – or as some experts are now calling it, transability.
Men and women like Jewel who identify as transabled feel like their idea of what their body should be like does not match reality.
Jewel has never known what it is like to desire sight. By the time she was 18, Jewel she was wearing thick black sunglasses, and got her first cane.
By the time she was 20 she was fluent in braille.
“I was ‘blind-simming’, which is pretending to be blind, but the idea kept coming up in my head and by the time I was 21 it was a non-stop alarm that was going off,” she told Barcroft TV.
Jewel’s obsession with being blind wouldn’t go away – and the young woman, studying a degree in education decided to find someone who could help her.
In 2006 she found a psychologist in Canada who understood her condition.
After working together for two weeks to ensure she knew the consequences of her actions they decided to take the next step.
Jewel told Barcroft TV the psychologist put numbing eyedrops into her eyes, and then a couple of drops of drain cleaner.
“It hurt, let me tell you. My eyes were screaming and I had some drain cleaner going down my cheek burning my skin,” she said.
“But all I could think was ‘I am going blind, it is going to be okay.”
But the result wasn’t immediately what she had hoped for.
“When I woke up the following day I was joyful, until I turned on to my back and opened my eyes – I was so enraged when I saw the TV screen,” she told Barcroft TV.
Jewel tells Barcroft TV about how she became blind. ( Post continues after video)
But eventually one of her eyes had to be removed after a ‘corneal meltdown’ where it collapsed in on itself and her other eye developed glaucoma and cataracts.
For Jewel’s family the discovery their daughter had made herself blind was difficult to come to terms with.
Initially Jewel told her family it was an accident, but they later found out the truth, and her mother and sister cut contact with her. Today she is supported by her partner, Mike – who is also vision impaired – and Jewel says she has no regrets.
“I really feel this is the way I was supposed to be born, that I should have been blind from birth.”
She has spoken out in the hopes that others with BIID (Body Integrity Identity Disorder) will seek professional help.
“People with BIID get trains to run over their legs, freeze dry their legs, or fall off cliffs to try to paralyse themselves,” she told The Daily Mail
“It’s very very dangerous. And they need professional help.”
The condition is a controversial one with some professionals questioning the ethics of treatment for the disorder. People with BIID have been known to ask surgeons to amputate healthy limbs or paralyze them.
Writing for Nuroethics, Christopher Ryan argued that amputation of a healthy limb is an ethically defensible treatment option in BIID and should be offered in some circumstances.
In 2012 Neuroscientist, Mo Costandi wrote for The Guardian that there had been 300 documented cases of BIID.
“Most of these are male, almost all of whom desire amputation of a limb on the left side of the body. ” he wrote.
“More often, it is the arm that is affected rather than the leg. All of these so-called ‘wannabe amputees’ know exactly where they want the limb to be cut off, to the millimetre, and almost all of them remember seeing an amputee at a very young age and thinking that they should have been born like that themselves.
He too argued that it was better for a professional to take control of the amputation (which is how most cases of BIID present themselves) rather than the sufferers.
“Offering a clean surgical amputation to those BIID sufferers who really want it would therefore minimize the harm that they might cause to themselves by taking matters into their own hands.”
“Psychotherapy and drugs are completely ineffective in alleviating the condition, and BIID sufferers will go to any length to be rid of the unwanted limb. Some build home-made guillotines, blast their unwanted limbs off with a shotgun, or try lie under a jacked-up car and try to crush it. “
Jewel Shuping says that she wants others with the condition to not suffer alone but to seek help.
“When there’s nobody around you who feels the same way, you start to think that you’re crazy. But I don’t think I’m crazy, I just have a disorder.”
For more on BIID, go here.