, , , ,

“Hi! My name’s John.”
“Hi, John.”
“I couldn’t help noticing that you’re blind.”
“Yes, that’s true.”
“I read this awesome article in a scientific magazine about the research they are conducting on curing blindness.”
“Wow! That’s interesting.”
“Wouldn’t it be awesome? You could see everything around you! It would make your life SO much easier!”

Every single blind person I know has had this conversation – or some variant – at some point in their lives. The idea is that blindness is this horrid place of darkness, and a cure would fix all of our problems. But when someone such as myself has the nerve to say “A cure would be awesome for some people, but I don’t think I’d want it,” you’d think we’d just slaughtered a kitten on a downtown sidewalk – the flabbergasted reaction is so intense. But why WOULDN’t we want to see? Wouldn’t it be so amazing? My friend Meagan has eloquently written about her own reasons why a cure for blindness might not be for her; it’s an opinion that I share, so I won’t belabor the point.  But I have recently come across a couple of articles that have piqued my interest, not so much based on their content, but the public’s reaction to them.

Jewel Shuping. Her name has become quite well-known in the blindness community over the past few weeks, as she alleges that she suffers from a rare condition called Body Integrity Identity Disorder (BIID), in which someone whose body is perfectly healthy has an uncontrollable need to become disabled.  Jewel claims that, with the aid of a psychologist, she blinded herself with drain cleaner, and, prior to that, she “blind-simmed” (acted like she was blind), using a white cane and becoming proficient in braille.  Though Snopes finds her story hard to swallow, it does present an interesting case study, both of Jewel herself and of a general public who thinks the reverse – a cure for blindness – would be the greatest thing on earth.

You don’t have to dig too far into comment sections (that vast, murky landscape of anonymous internet users everywhere) to know that support for Jewel Schuping and the psychologist who assisted her is very rare indeed, from both sighted and blind alike.  Sighted people can’t imagine anyone who would willingly take such a risk (though Jewel Shuping is not the first or only blindsimmer out there); many in the blind community resent her for knowingly blinding herself and potentially using resources that are required by those who are blind due to genetics, illness or accident.  Leaving aside the method of drain cleaner to blind herself – as voluntarily removing eyes probably doesn’t fall under the purview of any medical facility in the world – the reaction to Jewel’s voluntary blindness can be described as perplexed at best and vitriolic at worst.

On the other hand, Mike May chose to undergo a surgery that would restore some of his vision after becoming blind as a three-year-old.  This article pops the fantasy bubble that receiving sight is simple and will make everything better; Robert Kurson’s book, “Crashing Through,” appears to further address May’s physical and mental transformation after receiving some of his sight.  While I have yet to read this book myself, and while May’s experience preceded the explosion of social media, judging by the number of blindness-related  organizations who share his story, May has maintained a wide acceptance from the blind community at large.

I dare not compare Jewel Shuping’s methodology with Mike May’s (one has the acceptance of the medical profession while the other clearly does not), but the idea that one purposeful life-changing act can be so derided while another can be so accepted baffles my mind.  Conversely, what about the individuals who are struggling to come to terms with their own blindness?  At some point, everyone has to face denial, anger, and hopefully will reach a healthy place of acceptance.  But I know people who have denied their vision impairment for so long, until they came to a place where they felt safe to acknowledge it openly.  Conversely, I have known people who have admitted to me that they have feigned less vision than they actually had.  Some blind people – particularly those who have had vision – dream of a cure one day; others wouldn’t know what to do with it if they had it. To muddy the waters even further, if a true cure for all forms of blindness were found, what happens if one chooses not to undergo what would likely be a complex surgery and a lengthy rehabilitation process?  Would we be denied housing, education, employment because of choosing not to undergo risky and complex medical procedures?

Leaving aside any hypotheticals, doesn’t living life well all come down to being secure in who we are?  For some, like Mike May, it might mean taking chances and undergoing a revolutionary medical procedure; for others it might mean embracing life without sight because it’s all we’ve got.  I don’t know where The Jewel Shupings of the world fit in; while a cure for blindness seems a long way off due to its complexity, willingly blinding yourself seems short-sighted (no pun intended) and complex as well.

So perhaps the next time “John” approaches me and tells me that a cure for my blindness (which, by the way, is more than one eye condition) will solve all my problems, I’ll ask him how he would feel if I told him that blinding himself would fix all of his insecurities, frustrations or grievances of life.  After all, he’s telling me the reverse is true.