Jewel Shuping has Body Integrity Identity Disorder (BIID), a condition in which able-bodied people believe they are meant to be disabled, and resorted to desperate methods
For most people becoming blind would be a living nightmare – but for Jewel Shuping it was the fulfilment of a lifelong dream.
Jewel has Body Integrity Identity Disorder (BIID), a condition in which able-bodied people believe they are meant to be disabled.
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.
She said: “When I was young my mother would find me walking in the halls at night, when I was three or four years old.
“By the time I was six 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.
Jewel said: “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.”
Determined to make her dream a reality, Jewel found a psychologist willing to help her become blind – an act which she compares to a deaf person wanting to get a cochlear implant.
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.
Jewel said: “It hurt, let me tell you. 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 okay.”
Despite the hospital’s attempts to save her vision – against her wishes – they were permanently damaged, although it took around half a year for the damage to take affect.
Jewel, 30, from North Carolina, said: “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.”
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 fiancé Mike, 50, 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.
She said: “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.
“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.
She said: “Don’t go blind the way I did. 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.”
Dr Michael First, professor of clinical psychiatry at Columbia University in New York, who coined the term BIID, said: “Any major disability can be a focus of BIID, from amputation to paraplegia and blindness.
“These people are aware that this feeling of theirs is unusual – they know it is coming from within them. They can’t explain it.
“But because of this level of awareness we don’t consider this to be something that we would consider evidence of psychosis.
“In the world of psychiatry cures are rare, very often it’s about asking how you make someone’s life fulfilling despite their condition.
“Now the problem of course if you have a particular individual who wanted amputation or who wants to be blind – how do you know once you have done it that they are going to be satisfied?”
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.
She said: “I do understand why some people would be angry about a person giving themselves a disability.
“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 its 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.”