The Woman Who Chose To Go Blind (And Why We Shouldn’t Hate Her)

Jewel Shuping’s story went viral when it was revealed that she convinced a psychologist to pour drain cleaner in her eyes and blind her. Naturally, people freaked out.

Wow. Jewel Shupingis a idiot

— #FlyEaglesFly(@One_Liner_Tyler) October 2, 2015

//platform.twitter.com/widgets.js

Quite understandably, many people thought it was a hoax, but Jewel herself told her story, in an attempt to help others with what is called Body Identity Integrity Disorder. The disorder is similar to gender dysphoria in that the patient feels his/her body is not as it should be. In this case, Jewel, and others like her, genuinely feel that a part of their bodies—often a limb but in this case an organ—does not belong and they will feel incomplete until they get rid of it. For many, this results in amputations, but in Jewel’s case, she just needed to damage her eyes enough to feel blind. Jewel has never been happier.

This is unthinkable to just about everyone—indeed, the disorder is very rare—and this story has inspired shock and outrage from sighted and blind alike. Sighted people cannot imagine going blind anyway (as I’ve previously discussed, it is one of their worst fears) and even blind people think she’s a bit nuts. After all, most of us would not necessarily choose this life, even though we may not welcome a cure. Entertaining the idea of deliberately disabling myself makes me shudder, and my first reaction to this story was anger. Being blind is hard enough without sighted people actively choosing the “lifestyle”. Further, what will sighted people think of us? The blind community suffers from ambassadorship syndrome, even if we try to combat that instinct, and I wondered what implications Jewel’s actions might mean for the rest of us? It’s very difficult to give people the right idea about what blindness is like, and viral anomalies like this one further distort the picture.

Of course, sensational news can lead one down many paths, some of them a bit ridiculous. I began imagining what would happen if more and more people did this sort of thing. Would people lose respect and compassion for disabled people in general? Would everyone I meet become suspicious, wondering whether I was a “real” blind person or just someone who poured drain cleaner in her eyes on purpose? Would we need to undergo rigorous testing to make sure we’re not voluntarily disabled during screening for benefits, accommodations, and other special services? I eventually managed to derail the hysteria in my head, which left me with the hefty question: how should I feel about Jewel?

Unsurprisingly, Jewel and her actions have sparked much controversy for two reasons. One is that she claims to suffer from Body Identity Integrity Disorder—as mentioned above—so the question is whether or not she is mentally ill or simply different. Disorders are not generally viewed positively, but trans people are steadily gaining social acceptance around the world. They can be said to have a disorder as well, yet most forward-thinking liberals would not tolerate bigotry directed at them, nor would they support the dismissal of the disorder as “mental illness” that needs to be “cured”. So, does Jewel need “treatment”? Is she “ill”? Or, like trans individuals, is she merely feeling an all-consuming desire to modify her body in a way that has felt right for her since she was a child? One might argue (and indeed I have) that trans people are different because they do not seek to disable themselves. Changing your gender, while involving much mutilation and modification of body parts that are in perfect working order, does not have the same result as someone wishing to invite disability. Disability makes life much, much harder. It’s harder to get a job. It’s harder to gain social acceptance. It’s harder to support yourself and others, particularly if disability accommodations require costly technology and services. Being a trans man or woman is difficult whether they transition successfully or not, so they may as well go ahead and transition, hoping that they will one day “pass”. Blinding yourself, however, is a whole other matter. Still, the temptation to make the comparison is strong. Jewel even decompressed in the same ways trans people do. Using a cane and reading braille were ways of decompressing so that she could feel “normal”, at least some of the time. So, is BIID similar enough to Gender Dysphoria that we should treat the two equally? Is Jewel no crazier than Caitlyn Jenner?

The other bit of controversy deals with objections and fears from the blind community itself. While some of Jewel’s blind friends have been incredibly supportive—one even calling her “brave”—there has been a lot of hatred directed toward her as well. What if she makes the rest of us struggle more than we already do? We don’t exactly need more negativity associated with us, right? Then there is the very thorny (and legitimate) issue of accommodation: should someone who has deliberately disabled themselves be entitled to benefits, workplace accommodations, assistive technology grants and so on? Should someone who has purposefully blinded herself receive help for a disability she actually chose and embraced? Certainly, Jewel has access to at least some of this at the moment, and despite her contentment with her new lot, she still occasionally complains about some of the things blind people have been grumbling about for decades. Thanks to the paratransit, I will miss my first class. They are going to arrive until 1030. My first class is at 10. I am very angry.z

//platform.twitter.com/widgets.js

Does she have any right to complain about Paratransit when she chose a life that would force her to rely on it? Does she have any right to seek help that the rest of us need whether we want to or not? While I may not feel as angry as I did, I can certainly see why this angle, in particular, infuriates other blind people. We work so hard to be on a level with everyone else, even when we are perfectly content with ourselves, and it seems almost insulting to think that someone would handicap themselves and then have the gall to complain about it. It’s easy to get good and mad about that. But …

Is there any point in being angry? Is there any reason to hate her? Is there any good that can come from dismissing her as crazy? She doesn’t feel crazy. She feels very happy, and psychologists and neurologists have acknowledged that what she is feeling is also felt by others. Even if we choose to frame her condition as mental illness, we still have to respect the fact that she has cautioned others with BIID, asking them to seek treatment before resorting to drastic measures as she did. She went so far as to admit that it really is a disorder, and that while she is happy with her choice, it is worth seeking alternative treatment and, if people still decide to go through with it, they should do so using much safer channels. Wanting to modify your body in drastic ways may not be objectively crazy, but getting a psychologist to put drops of drain cleaner in your eyes might be a little crazy.

My post raises far more questions than answers, I know. I worry: I worry that Jewel will continue to be the target of intense bigotry, hate, and derision. I worry that other people suffering from BIID will be dismissed, or shunned, or silenced. I worry that people will begin to see Gender Dysphoria as crazy again, and direct even more bigotry, ignorance, and hatred towards trans people. In short, I worry about more hate, more anger, and more myopia. Will people want to view this issue from multiple angles, or will they simply refuse to think about the matter long enough to see a grey area? I can just imagine all the sighted people taking one look at this headline and picturing men in white coats hauling Jewel away. I can also see blind people taking one look at this and feeling powerful anger and contempt.

I hope good can come of this. Jewel is happy, and other people with BIID have the potential to be happy—or at least happier. Jewel’s message of caution and alternative treatment is just as important as her own choice. She’s not trying to lead a movement here. We’re not likely to see a huge wave of BIID sufferers coming out of the woodwork, dismantling the whole disability accommodations system as we know it. However, it is very dangerous to treat this like a happily-ever-after scenario. This has so many complicated facets, and I know there will be a huge outcry from the trans community if they feel delegitimized by BIID. We need clear heads, and open minds, and rigorous research. We need objectivity. This is not a good time for black-and-white thinking. Do me a favour, and spend five minutes looking at this from every angle. Then, tell me what you see.

Advertisements

14 thoughts on “The Woman Who Chose To Go Blind (And Why We Shouldn’t Hate Her)

  1. Hi Meagan
    Thanks for such a fabulous and well-considered post. I’d go further than you and welcome this woman into the whanau (Maori word for family).
    To my mind the reason we find life so hard as disabled people is because of the disability: i.e. the way society views and treats us. If you look at the
    social model of disability which is gaining traction the world over, you find that it separates impairment (the health condition) from disability (the
    societal effect of that impairment). This puts disability in the same category as race or gender or sexual orientation: something which adds to the diversity
    of humanity, instead of being seen as a handicap requiring accommodations. .
    Since 1974, anyone living in Aotearoa (New Zealand) has had the right to culturally self-identify as Maori and there is no minimum bloodline requirement.
    Our 2013 census put the Maori population at 598,605, or one in seven of New Zealand’s population, this despite the fact that no one now knows whether there
    are any full-blooded Maori left.
    While it may be argued that indigenous peoples have rights which are separate from those in minorities like disability, the point I’m striving to make
    is that there wouldn’t be such a hue and cry if Jewel Shuping had self-identified with another culture, or even another gender, instead of the disability
    community. We all have the right to be who we are, and that’s not necessarily the person we ‘see’ in the mirror, or the person society expects us to be.
    The day that we can erase words like ‘handicap’ and ‘accommodations’ from our consciousness, the day we disabled people can see ourselves as different
    and not broken or damaged, the day society can see us as whole people including and not despite our impairments, will be the day we can all start to be
    welcomed into the wider whanau.
    Jewel Shuping: welcome to our family. Kia Kaha! (Be Strong!)

    • Hi, Kylee. Thank you for your kind words; I’m glad you appreciated my attempt at a thoughtful approach. I also appreciate your knowledge of and respect for the social model. I generally like that model better than the medical one that is so prevalent at the moment, and while I don’t pretend to understand this condition, I cannot respond to it with derision, either. I know enough to recognize something I am too uninformed about to have an opinion on, so I’m waiting and seeing. And, that policy you mentioned sounds really groundbreaking.

  2. Thank you for this blog! It was very interesting, and made me think too. I never thought about the implications of what I did. I only hope that the blinds communities septs me is who I am, and isn’t angry at me. Sure, I made myself blind. But I don’t feel that I am crazy. I’m trans abled, And L who I am supposed to be. I live my life like a normal blind person, with the same advantages and disadvantages as any other blind person. If you have any questions for me, feel free to send me a direct message @jewelisgoofy
    Jeweln

    • Hi, Jewel. I’m glad you enjoyed the post, and that you did not see it as a personal judgment of any kind. I did try to lay out all possible sides to the issue, but personally I am inclined to believe you when you say you feel normal and happy now. Thank you for speaking up and encouraging others with BIID to be safe in their explorations.

  3. My only real… I guess you can call it a qwerk re: this story is more to do with the fact I can’t wrap my head around why someone with a perfectly working set of eyes, or hands, or whichever would much prefer to go without them–and this coming from a guy who’s never had it in the first place. Much for the same reason I wouldn’t want to wake up tomorrow and be able to see, I can’t see why anyone would willingly choose to wake up tomorrow and not. I mean if it works for her, that’s awesome, but colour me clueless on the reasoning for it. I just don’t get it.

    I do remember reading something earlier today about one of the reasons she did it was to teach other blind people to be more independent, but I’m not as inclined to buy into that as one might think–if only because, and I’m trying to say it without coming off completely offensive, unless you’ve done the blindness thing for your whole life or close to it you probably haven’t got the slightest idea. Much like someone who could find themselves sighted tomorrow wouldn’t have the faintest idea of how to independently function in that world, even if they’d completely mastered functioning in the blind one.

    On a semi-related note, I do wonder what this is going to end up doing to the psychologist who helped her. I mean this isn’t exactly approved treatment, even if the psychologist meant well and this is exactly what Jewel wanted. I can’t help but think of the expression, “The road to Hell is paved with good intentions”.

    • I was thinking of that, too. No matter how well-intentioned a psychologist (or any medical professional) might be, you just. don’t. do. that. I wonder if he has ever been identified.

  4. I’ll have to admit I didn’t listen to all of the comments. We accept sexual orientation as hard wired in. Some of us know transgender people and agree that is hard wired. So why, pray tell, does this thinking stop when BIID enters the picture?
    I believe it is the so called normal persons fear of disability, that same fear that makes it hard for us to get jobs. “Neurotypicals,” as my friend calls them, don’t fear changing sex or sexual orientation, but they fear my amputation and they fear my blindness. So they can’t, or won’t, understand BIID.
    Yes, it is real. Yes people with BIID deserve the “reasonable accommodation” I get, which is sometimes sadly unreasonable.
    It took courage for you to write this blog, and I sincerely applaud you for doing so.

    • Hi Kristen. Thanks for your encouragement. I admit that I am, while not entirely neurotypical (I have some mental illness on my shoulders, as do many of us) I don’t get it. The difference is that I don’t feel the need to get it in order to acknowledge it. I have no idea what to think concerning the larger picture of the world…all I know is that no one “chooses” to be gay, or trans…so if we can “tolerate” all that, then surely there is room for greater understanding here. It’s so easy to “take a stand” and passionately “express one’s opinion” now. It is much harder to write a balanced, measured post on just about anything. I’m glad some people stayed to actually listen.

  5. Please don’t get upset, but no I don’t agree with you. But let me give you a idea of where I am coming from. I am Autistic and in my case it effects how process what I am seeing mainly, but also what I hear, and how I speak or not speak at times.

    I also have faults in my vision since birth that effects me, but until my accident were not to legal blindness. I was back then night blind, my visual field has spots missing, and I have basically no depth of perception.

    I not could not until my horse accident get the help I needed to do things non visually. I had to deal with all things that were effecting my vision and just get by. While I don’t like the vision I have lost now, using non visual ways ie a long cane, my hearing, and other things are very much safer.
    But after that long story I will tell why I am upset with someone like Jewel I could not get the help I needed, my doctor who also knew I was Autistic said these things would have helped you long ago, but my hands were tied on helping you. While I couldn’t drive a car, I couldn’t get para transit either.

    My processing and visual issues effected me from getting a job to something as simple as being close to people. But in the US someone like me falls through the cracks. Neither the this department or that department could help me before. I am not alone in this fact. Which is the reason some non profits including guide dog schools have taken it upon themselves to help people like what I was.
    I couldn’t dream of wanting to be blind, or legal blindness for that matter, or even the issues that I was born with. But then having that person who went through it and blinded themselves get the help that people who actually need it, and did nothing to themselves couldn’t get. That woman needed real mental help not drain cleaner.

    • Hi Charlie. I see where you are coming from and if you’ll remember, I did point to all of those concerns and feelings. I will not pretend I am entirely pure of heart: I did feel a measure of bitterness. Here we are, fighting the good fight, and some sighted person wanders onto the battleground and blithely says “May I join you?” It’s hard. Really, really hard. So no, I’m not upset (you are always more than free to disagree with me, no need to apologize for that) and I’m glad you at least gave me the chance to show all sides of it.

  6. to be perfectly honest with you Meagan, I really don’t know what to think I have to choose my words carefully but having a disability isn never a choice one should make. “ever”. and a psychologist would lose their job if they ever did something like that to a client of their’s I’m not here to judge or I’m going to be sent hate mail about my comments but as is said one is entitled to their opinion for instance. I never chose to have kidney failure it was just the cards I was dealt at the time it’s like saying that a woman chose to be raped and that again is victim shaming and I’ve learnt not to judge unless I know the details in short I should think before I pass any judgement and I will apologise for that last reference I just made because it’s going to anger those people who see this comment but you I would never wish blindness on my worst enemy nor would I wish my earlier health issues on anybody even if they were enemies.

    • I completely understand what you’re getting at and while I do my best to understand Jewel and those like her, I won’t pretend I think it’s a wonderful thing. I hope the disorder stays very, very rare, I’ll put it that way. Disability is hard enough without people being born wanting it. As far as the psychologist…I should think he would lose his job, yes, though I’m not sure if he was ever identified.

      • thanks Meagan I did forget to say that we don’t know if the psychologist was a he or a she but that’s beside the point and is neither here nor there. think I was just worried that my comment wasn’t going to be well received think I was half expecting to have strips torn off me lol.

  7. Pingback: On putting the dis in ability. - Welcome to Nowhere

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s