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

Believe Me: There Are Worse Things

I’ve often observed that people react to blindness as though it were the worst fate they could possibly imagine. Of course, for some it probably is (though I do wonder how good their imaginations really are). Sympathy (sometimes misplaced, sometimes welcome) abounds for visible disabilities like deafness, blindness, paralysis and so on. What we lack, though, is compassion for those with invisible disabilities–and they may be the ones who need it the most.

I’ve always been blind, and most of the time my life has still been full and happy. But I carry heavier burdens, too—burdens which aren’t easy to see. Among other issues, I suffer from chronic tension pain, migraines, and mental illness. Unless you come upon me walking out of a psychiatrist’s office or holding my head in pain while I throw up on the sidewalk, you won’t know any of this simply by watching me go about my day. Blindness causes me to suffer in highly visible ways; it’s hard to miss it when I trip over a chair or smash headlong into a wall. At job interviews, employers become immediately nervous as they mentally catalogue all the problems they anticipate. They wonder about how I will keep up with the workload. They wonder how I’ll navigate the building safely. They wonder whether my screen reading software will be supported by their current systems.

They don’t wonder how I’ll attend work regularly. They don’t wonder how I’ll find the emotional, mental, and physical energy to make it through the day without collapsing. They don’t wonder who will drive me home when I’m too weak and sick to walk unaided. They don’t think about the leave I might need if my mental state becomes too precarious.

They can’t wonder these things, because I don’t go out of my way to reveal them. Some stand behind the policy of full disclosure: get it all out of the way now so that awkward questions and explanations aren’t needed later. Really, though, If an employer won’t accept me because of a relatively superficial disability—one that can be easily accommodated—how will they feel when I reveal far more debilitating disabilities? Let’s face it: having malfunctioning eyes has nothing on being in excruciating pain, or feeling so low that you want to die.

Sometimes, I fear that people will judge me harshly if I divulge too much about my “other” disabilities. I worry that they’ll think I’m crazy, or whiny, or simply delusional. Will they label me an attention-seeker? I mean, I’m blind plus six other issues? When does it become suspicious-looking? I’ve been blessed with many compassionate people in my life ranging from friends, to coworkers, to instructors. They’ve done their best to let me know that I’m okay, no matter how many things are wrong with me, and that I don’t have to feel guilty about what I can’t control. Conversely, though, I’ve had people become frustrated and offended when I cancel plans due to a sudden migraine (it’s not like I plan them!) or bow out of an engagement because I’m feeling too down to even get out of bed. Each time this happens, my first instinct is to blame myself, even when I know better. It’s easy to convince people that my broken eyes aren’t my fault; it’s harder to convince them that I don’t choose to be depressed, or lie abed all day in pain. Some of them won’t say it outright, but it’s clear as day that they doubt me. I can’t articulate what it’s like to know that it is only my least debilitating disability that people will feel any empathy for. I don’t need help across the street as much as I need a sympathetic ear and maybe a hug.

The pitying sighs get to me after awhile, partly because I don’t need them (I get along fine, thanks) and partly because they are so misguided. I don’t want a pat on the shoulder because my eyes don’t work; they never have and they probably never will. I don’t need them in order to live contentedly. What I do need, though, is energy, will, and strength. My invisible disabilities strip all of that away on a regular basis, leaving me to struggle along in the wake of emotional and physical suffering.

Now, before I go any further, let me make it clear that I’m not saying that blindness doesn’t have its downsides. I’ve done little but write about them for the past few months. I’m also not trying to run a fishing expedition here: I’m not claiming that everyone should begin pitying me for something other than blindness. Ideally, I don’t want any pity at all. But considering the ample sympathy that is heaped upon those with visible disabilities, it would be nice to distribute some of it to those whose pain is less evident but no less unbearable.

No, you won’t be able to tell who is suffering from what unless you make a habit of asking people intrusive questions (and we all know how I feel about those). But if someone comes to you with a clearly visible disability, don’t automatically assume that it is the only battle they’re fighting. For as John Watson so aptly observed, you should always be kind, for “everyone you meet is fighting a hard battle”.

It took a great deal of personal courage to write this post, humble as it is. As I’ve said, I usually take pains to hide these parts of myself, lest I be misjudged or shunned. But as Gregg has taught me, silence is our worst enemy here. If people like me don’t speak up, then no one can understand. You can’t offer compassion for what you don’t know exists. It’s blogs like these which need to be written. It’s conversations like these which need to take place. We need to know that we can be honest. I live for the day when being frank about what I can’t control will not bring me shame or guilt, but relief and a sense of peace.