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“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.
I’ve had this very conversation a lot over the years. people would ask me if I’d ever consider the bionic eye and my answer is always no as I say. I’ve known no different why miss what I haven’t got? just by coincidence, I had this conversation with somebody at a convention I was at the other day and I said that restoring my sight may not only be extremely risky but also costly and I don’t think I could put myself through that as I’ve had lots of surgeries in my life and major surgeries at that the thing that slightly annoys me is this. if somebody calls to ask mum if she would donate to a certain charity, she tells people that I’m legally blind my understanding is that legal blindness means you have some usable vision not a lot but sume but me I say I’m totally blind. my mother says I’m legally blind and she says I may be entitled to more benefits if I say I’m legally blind as aposed to totally blind I don’t ever believe in lying but I’m told it’s okay to sometimes tell a little white lie to get what one needs
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I do disagree with you. Having known people over the years who have failed to openly acknowledge their blindness, to those who have pretended to have less vision than they really do… the people who get hooped are those who cannot fake it one way or the other. Not sure why stating you are legbally vs. totally blind gets you more support, though…
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so what exactly do you disagree with? I’m just asking out of curiosity here. I’ve openly said to people sometimes when I was younger that I was blind and they said they knew as they could see my cane or that my eyes were closed. another annoyance is when going to have a passport photo taken you’re not allowed to smile or close your eyes so my mother had to get a letter of proof from my doctor stating that I was blind and couldn’t open my eyes
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I’ve been kind of “out of the loop” the past week or two — hadn’t heard of Jewel. Hadn’t heard about the new Mike May article, either. Thanks for the links,I’ll give them a read now. Also thanks for all the time and care you put into this extremely well-written post, I hope you consider sending it out to other publications to get it even more attention. Really fine work here.
_____
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Beth, thank you! I’m just a little blogger… never much thought about sending this post further.
The Mike May article is older, but it was a really illuminating and personal look into the process of his sight restoration. The catch is, I believe the brain would have to have some form of context for interpreting the images; something that someone who has been totally blind since birth just doesn’t possess.
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As you mentioned blindness covers a multitude of conditions some of which do not involve the eyes at all.
Vision requires a vast expense in mental energy and a large volume of brain area. After a time without input from the optic nerve much of the visual cortex would atrophy if it was not reassigned to other uses.
This is not to say that the blind automatically have heightened ability in other senses, but that restoring input to the brain could be less successful than many articles would lead us to believe.
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I see your love of science books and TV documentaries is paying off 😉
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