For most people, becoming blind would be a living nightmare – but for Jewel Shuping it was the fulfilment of a lifelong dream.
Jewel, 30, from North Carolina, USA, has Body Integrity Identity Disorder (BIID), a condition in which able-bodied people believe they are meant to be disabled.
Shockingly, her need to lose her sight was so strong that in 2006 she decided to blind herself – by having a sympathetic psychologist pour drain cleaner into her eyes.
According to Jewel, her fascination with blindness began early in childhood.
‘When I was young my mother would find me walking in the halls at night, when I was 3 or 4 years old,’ she recalls. ‘By the time I was 6 I remember that thinking about being blind made me feel comfortable.’
As a child she would spend hours staring at the sun, watching sunspots and solar storms, after her mother told her it would damage her eyes.
In her teens she started wearing thick black sunglasses, getting her first white cane aged 18 and becoming fully fluent in Braille by the age of 20.
‘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,’ says Jewel.
Determined to make her dream a reality, Jewel found a psychologist willing to help her become blind. The psychologist put in numbing eyedrops – acquired by Jewel during a special visit to Canada – and then a couple of drops of drain cleaner in each eye.
‘It hurt, let me tell you,’ recalls Jewel. ‘My eyes were screaming and I had some drain cleaner going down my cheek burning my skin. But all I could think was, “I am going blind, it is going to be OK.”’
She was taken to hospital and despite attempts to save her vision – against her wishes – her eyes were permanently damaged, although it took around six months for the damage to take effect.
‘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 says.
But over around six months the sight in both her eyes slowly went away.
Her left eye suffered a ‘corneal meltdown’ – collapsing in on itself and requiring the eye to be removed – while her right eye had glaucoma and cataracts, as well as a webbing of scars.
Jewel originally told her family it had been an accident, but they eventually found out the truth – causing both her mother and sister to cut contact.
However, she has been supported by her former fiance who is registered legally blind – although in his case due to naturally occurring early-onset macular degeneration.
Jewel, who is studying for a degree in education, now says she has no regrets and that she dreams of helping other blind people live an independent life.
‘The only thing I would want to see again is my dad’s face, although sadly that’s not possible as he’s no longer with us,’ says Jewel.
‘I really feel this is the way I was supposed to be born, that I should have been blind from birth. 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.’
Jewel is now sharing her story to help raise public awareness of BIID and to encourage people with the condition to seek professional help.
‘Don’t go blind the way I did,’ she implores. ‘I know there is a need but perhaps someday there will be treatment for it.
‘People with BIID get trains to run over their legs, freeze dry their legs, or fall off cliffs to try to paralyse themselves. It’s very, very dangerous. And they need professional help.’
And while Jewel is happier than ever living as a blind woman, she says she can see why people who were born with a disability or who acquired one involuntarily might find it hard to comprehend her actions.
‘I do understand why some people would be angry about a person giving themselves a disability,’ she says. ‘They think it’s a ploy to get social security, or a waste of advocacy that would be better focused on people with an involuntary disability.
‘But I feel that the way I became disabled doesn’t really matter. If someone were to say that it’s fundamentally selfish to blind myself, I would say that it’s selfish to refuse treatment to somebody with a disorder.
‘This is not a choice, it’s a need based on a disorder of the brain.’