Fearing The Pigeon-Hole: Or, The Trials Of Being A Disabled Writer

During a mock interview, the interviewer skimmed through some writing samples, noticing how many of them were directly related to disability. He then asked, without a trace of irony, whether I was “all about accessibility?” I didn’t have a coherent answer for him.
After mentioning blindness in a piece of creative writing, my classmates pressed for details, appearing to overlook the fact that the story wasn’t about being blind at all. I was writing about love, familial obligation, and social isolation, but all people seemed interested in, at least at the time, was the blindness angle.
Writing a blog about disability advocacy is hard, honest work, but many people believe it is the obvious choice for a blind writer. It is generally assumed that disabled people only ever write books, articles, and blogs about their disabilities, and all too often, this is proven true. Most of the blind writers I know focus, if not exclusively, then predominantly on their disability and how it colours the world around them. They may engage in all types of social advocacy, but disability tends to be at the forefront. They may have a varied work history, but much of it might involve working for advocacy organizations. We are, in short, pigeon-holed.
As I embarked on my modest little writing career, I began to fear the pigeon-hole. I wrote stories and articles that were completely devoid of disability-related themes, just so I could avoid being put into a neat little box. I explored every other facet of myself—Meagan as woman, Meagan as student, Meagan as writer and so on—but tried to write around blindness so I would seem more nuanced and less typical. I fought hard when classmates and instructors would press for more information on my disability, especially when I deemed it to be peripheral to the writing in question. I resisted when people suggested that my writing would only be unique if I included my disability, as though the rest of me was incurably boring without it. I became frustrated when I was told to “write like you do for your blog,” thinking this meant I was only of interest when writing about my broken eyes.
What I failed to understand, though, was that my disability-related writing was appealing simply because it was direct, confident, and convincing. I wrote with an authority I struggle to maintain when writing about other subjects less well-known to me. My straightforward and relatable approach on the blog was what made others want to see more of that style, not the blindness itself. People didn’t want more of my blindness, per se; they wanted more of me, period.
Nervous that I would inadvertently paint myself into a corner I would never emerge from again, I considered dropping my blog altogether, to weaken the associations between my writing and my blindness. Would having a blindness blog peg me as a one-trick pony right off the hop?
I asked myself what I’d write about instead. Contrary to the beliefs of many, I have wide-ranging interests, and could probably write several blogs if I had the time and energy. My bibliophile mind would have no difficulty conjuring endless posts about my reading life. Certainly my adventures with mental illness would provide ample fodder for a blog all on their own. I could easily write about music, popular culture, technology, and even philosophy, without breaking too much of a sweat. If I thought enough of my writing to believe people would actually enjoy them, I could cover a lot more ground.
It took some time, but I’ve come to realize that writing “Where’s your dog” does not have to pen me in as a writer unless I let it. Focusing on disability in one medium does not restrict me in others. Writers are, in theory, limited only by their time, energy, and ingenuity. I can submit to as many publications as I’d like. I can establish as many blogs as I please (though I think one is enough, for now anyway). I can explore the multi-faceted world I inhabit just as fully whether I have a blindness-related blog or not. And, if I fear that employers and the casual reader will dismiss me as that one-trick pony, why, all I can do is prove them wrong.
Further, if I do choose to write about my disability in relation to the wider world, that’s not shameful or lazy. If the everyday woman can write about being female, and the everyday lover can write about being in love, then surely I, the everyday blind person, can write about being blind without sacrificing self-respect. Surely disability, like any other minority trait, is enough to give me an interesting perspective on the world? After all, I greatly enjoy the perspectives of fellow disabled people. So, why shouldn’t my own writing about my blindness be truly meaningful?
Society is so often putting us in boxes, telling us our place, and shaping our narratives. In this case, though, the only one stuffing me into the pigeon-hole was me.

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Disability: The Gift That Keeps On Giving?

I was intrigued when I found out that Pope Francis planned to address disability. Historically, religious institutions have treated disabled people as angelic gifts from God, meant to represent innocence; living examples created to inspire love and compassion; or burdensome, cursed individuals who must be either healed immediately or cast out. Whichever viewpoint I analyze, it’s clear to me that none of these depictions of disability is accurate, and they are all potentially dangerous.

The “Cool Pope” disappointed me, however, when he placed himself firmly in the “gifts from God” camp. There goes progress, I thought. I’m not part of any religious institution anymore, but that has not limited my exposure to this ideology. Plenty of nonreligious people believe our disabilities are gifts—to the world, if not to us—which are meant to inspire goodness in other humans, and to foster special strength when fighting adversity. The idea, it seems, is that while disability is undoubtedly difficult and certainly not ideal, we’re given it for some mystical, predetermined reason, and our purpose in life is to function as a blessing to the world through our unique perspectives and commendable fortitude. People appear to subscribe to this belief whether they believe in a specific God, a nebulous higher power, or nothing at all.

You might think this is a refreshing change from the disability-is-universally-terrible myth, but it’s not much of a respite when you examine it closely enough. Once again, the ideology of disability perpetuated by able-bodied people dehumanizes us, placing us on either a higher or lower plain, depending on your perspective. Some would say higher, because we’re blessed with special powers of endurance, and what’s not flattering about being considered a “gift” to all the world? Some, like me, would consider the plain lower, because I find the viewpoint disturbingly backward. Disability is not written in the stars; or, at the very least, it is not usually inexplicable. People are disabled because of injury, disease, genetic disorders and so on, not because their destiny is to function as a living advertisement for the virtues of compassion. Believing that my disability was given to me for some mysterious purpose I am called to fulfill is a very heavy load to bear. My disability is neither a gift nor a curse; it just is. What I do with it is mine to decide.

I know it’s comforting to think of my blindness as something positive, and it does have its upsides (though I’d argue that I’d face plenty of hard times without it and could learn most of the same skills if I were sighted). This comfort is false and cold, though, especially since I’m not bettering the lives of others by default. Each time my blindness gets in my way—prevents me from finding employment, subjects me to discrimination, hinders me in all the ways it does—I don’t glow with purpose or rest in the knowledge that suffering is part of my destiny. What I do is get on with it.

As I’ve said many, many times now, I don’t spend my life feeling miserable or bitter. Genetics do what they do. That doesn’t give me or anyone else license to pretend that disability isn’t negative, though. I don’t subscribe to the concept of disability being some kind of transcendent experience or perk. It’s something I work around–largely because of the world’s attitudes and not because of my broken eyes themselves–but it’s not something I’m proud of.

So, next time you want to placate a disabled person—or the loved ones of disabled people—by insisting that disability is a divine gift, stop and think about what that might mean. Getting rid of this misconception is just one more way I can be thought of as fully human: flawed, but equal.

What Does Blindness Look Like, Anyway?

I was at church a few weeks ago, and a women’s group I’m involved in was doing a bible study led by a woman who happens to be blind. We watched a video series featuring a blind person, and someone made the comment ‘You know, she doesn’t look blind!’ Of course I turned and said ‘What exactly does blind look like? Why doesn’t she look blind?’ While I had a smile in my voice, I silenced the whole table because no one wanted to answer. Their silence was answer enough.

This quote, contributed by one of my blind readers, perfectly illustrates the awkwardness that ensues when sighted people casually observe that someone doesn’t “look blind.” Many mean this quite literally, of course. Canes, guide dogs, and prosthetic eyes are dead giveaways, and they are fairly well-known symbols of blindness. So, when some people say this, they might simply mean that someone’s eyes look to be in working order, and they don’t have a mobility aid in sight. Unfortunately, there are many other sighted people whose comments are more complicated. Upon closer examination, the implications are somewhat troubling. It is rare that these people have given much substantial thought to what blindness is supposed to look like, and are reluctant to analyze their own perceptions when they are challenged.
So, what does blindness look like, really?
Maybe it looks like an anonymous person waving a cane around, or marching along with a dog. Maybe it looks like someone shambling in an ungainly manner like something out of The Walking Dead, arms outstretched, searching carefully for obstacles. Maybe it looks like someone who has half-closed eyes, or milky white eyes, or no eyes at all. This last, at least, makes a kind of sense.
For me, though, blindness looks like a normal person doing ordinary things. For me, blindness looks like anyone you might meet on the street, the only difference being a mobility aid and, in some cases, prosthetic eyes or dark glasses. For me, blindness looks normal—or as normal as any part of the human experience can be. Yes, blindness sets us apart; there’s no denying that. Still, people’s perceptions and the reality look quite different.
Whenever someone tells me that I don’t look blind, it’s meant as a compliment: they mean that I’m competent, graceful, and normal-looking. They mean that my eyes are pleasing to look at and seem natural enough, even though they move about constantly, never really focusing on anything in particular. They mean that I’m far removed from the graceless, clumsy mess they often picture blind people to be, and it surprises and delights them.
While I was trying on wedding dresses, my bridal consultant was apparently blown away by how quickly and easily I could move around in an unfamiliar environment. I don’t consider this of note, really, but she certainly did, and more than once she said things like “I don’t believe your blind!” and “You must be faking it!” For her, ease of movement and grace were not associated with blindness, and in her own strange way, she was trying to praise me.
The thing is, this compliment is backhanded, even when it isn’t meant to be. It is predicated on the assumption that a blind person will be pleased to be singled out from the rest, and happy to be recognized for their ability to participate fully in the wider world. We are expected, it seems, to look down upon other blind people—those people who look conspicuously blind—and be grateful that we’re not among them.
I’m not proud to be blind, per se; pride seems a little absurd to me. Blindness is, at its base, a hardware failure. That said, I’m not ashamed of it, either. I don’t see it as a stigma I am railing against at all times. My life’s mission is not to seem as sighted as possible or to stand out because of sheer normality. My life’s mission is to go out there and be a decent human being; to write and edit for a living; to play a little music in my spare time; and to love, laugh, and enjoy my time here with abandon. Blindness isn’t something that should define me overall, even if it is a significant part of my makeup.
So, what does blindness look like? Well, I think it looks … human.

“Why Are You So Angry?”

Almost every person who so much as encourages advocacy will face this question at some point, and while I don’t get it often (my writing style isn’t what you’d call vitriolic), I have been asked this multiple times. “Sure, you deal with a lot,” they say, “but do you really need to be so pissed off about it? Do you really need to write a whole blog whose purpose is to complain, and point out all that’s wrong with the world?” My answer to this is always the same: “Huh?”

I’m not an angry person. I like my life, even when it’s difficult, and I have great faith in the idea that human beings are capable of kindness and enlightenment. I spend most of my time just being Meagan, and the rest is usually spent trying to educate, not lay blame or spew hatred at the world at large. Yes, I do go on about what’s wrong with society. Yes, I do sometimes vent my frustration on a public forum. Yes, I get angry sometimes.

Do I spend my life in a state of perpetual fury? Do I direct hostility toward the sighted population? Do I focus more on being a malcontent than on trying to make the world that little bit better? Nope. I’d much rather bring positivity into this world than anything else, even as I’m being direct and unyielding concerning my rights as a human being.

 

I must confess that I’m shocked at the public’s expectation that we should be virtuous angels, patiently awaiting the day when the world will give a damn about the injustice that is built into society’s very structure. I am amazed that people are surprised when we object to systemic discrimination and harmful stereotyping. I mean, would they shoulder these things with unwavering grace? I don’t think so. That said, do we have the right to reject all efforts to reach out to us? I think not.

 

I did not create my blog with the intention of using it as a source of fatalistic ranting. I set out to maintain a safe space where ideas could be shared, questions could be answered, and advice could be dispensed. I’ve always kept one goal in mind: how can I foster empathy and understanding? How can I describe what my life is like, and how can I use that insight to help others?

I’d like to believe that regular readers realize I’m prone to seeing the good in the world. I hope they have noticed my tendency to right wrongs and offer solutions rather than condemn specific individuals and the mistakes they make. I hope, most of all, that I make my readers feel inspired, not hopeless, and determined, not angry. I resent those disabled people whose sole purpose appears to be making “normal” people miserable. I don’t expect them to maintain a sweet disposition when they’ve been fielding the same ignorant questions and withstanding the same discrimination for years on end. It’s acceptable to indulge anger; it can be a powerful tool if it’s used correctly.

That, of course, is the key: one must use anger judiciously. There’s enough rage-fuel online without worsening the problem. It wastes time and energy we could be devoting to initiatives that improve our lives. Accessibility and inclusiveness benefit us all, whether we’re disabled or not. We can all share in the fruits of disabled people’s labour. We can all read and write blogs like this one. If we get a bit angry sometimes? Well, I’d say that’s human, wouldn’t you?

Dear Parents: Think Before You Share

If you’ve ever googled any specific disability, you’ll find public Facebook and Instagram profiles, blogs, biographies, anthologies, and videos about what it’s like to parent a disabled child. The angle might change a little. Some parents want to tell you that it’s all roses; others want to point out that it’s occasionally rather awful; some want to assert that it’s somewhere in between. Whichever angle they take, though, their actions amount to the same thing. They are constructing, however unwittingly, a publicly accessible wealth of data about their children, often in the absence of knowledge or consent. Your blind toddler is too young to tell you whether he wants his pictures posted publicly. Your twenty-year-old mentally disabled daughter may be incapable of consenting, even if she does know you’re uploading pictures of her for the world to see.

I never really gave much thought to the activities of parents on social media until the advent of the #FreeTheNipple campaign. Facebook got in trouble for removing pictures of breastfeeding mothers, and there was, predictably enough, mass outrage. People assumed that the removal was due to an inability to tolerate a naked nipple. Breastfeeding isn’t gross or shameful, said protesters, and there is no reason to take down such photos when equally explicit ones are shown elsewhere in much less innocent contexts. Amid all the righteous anger, though, nobody seemed to be considering the rights of the children in question. Everyone was fixated on the woman’s right to display her breasts, while failing to analyze whether the children should be in full public view before they are old enough to know what Facebook is, let alone give informed consent. This isn’t 1990. Photo albums aren’t locked up in a dusty closet. Long after your friends are done cooing over your little one, the pictures remain easy to find, especially if your privacy settings aren’t as airtight as they ought to be.

I suppose one might say I’m fear-mongering; what’s the harm in showing cute pictures of your kids, after all? I really think that the game changes when it comes to disabled children. Many of the blogs and public profiles dedicated to parenting contain details of bad days as well as good days. The indignities of life with, say, autism are often described in full detail right alongside the joys of parenting these children. It’s one thing to post a cute picture of your daughter using her first cane, but quite another to go on at length about your autistic daughter’s most recent meltdown. I don’t know about you, but I wouldn’t appreciate having that plastered all over the internet for everyone to…what, sympathize? Gawk? Cluck their tongues in pity? Hail my mother as a martyr? None of these reasons seems adequate to me.

I get it: parenting a disabled child is sometimes exhausting, lonely work. It can be therapeutic to post your struggles online, where you may seek support from informed strangers outside your immediate social circle. It’s comforting to find a network of parents just like you, who can offer advice and guidance. While you are enjoying all this support, though, I urge you to take a moment to consider the focal point: your child. To what extent are you sacrificing their personal privacy for public solidarity? Are you surrendering too much detail about their lives where anyone at all can see it (including future employers, peers and so on)? Are you exposing potentially sensitive information that they may one day be upset by? The blogosphere can be a dangerous place to express unpopular opinions which may be why so few voices are countering the main viewpoint.

It’s one thing to blog about yourself. While I am relatively circumspect about what I discuss, I do write with intentional frankness. As someone once described it, my writing “goes there” and I’m proud of that. I do mention others and explore universal themes, but the blog will always have its roots in my personal experiences. Privacy, it seems, is a human right that is cherished less and less. If you’re going to endanger privacy, let it be your own.

When it comes to your disabled child, though, you should be as careful and thoughtful about your posting habits as you can. Ideally, you should remain anonymous, but if you can’t (or won’t), at least be cognizant of your actions’ potential impact. Maybe it feels liberating to hammer out a post after a long day of dealing with hardship. Maybe it gives you pride to compose a detailed article about how your blind daughter has finally figured out how to, say, navigate her first school independently. It feels great to share these things, I know. Our natural human desire to share everything that matters to us is what keeps Facebook and Instagram in business, after all. Just remember, as you fulfill this desire, that it’s not all about you.

It is not necessarily selfish of you to blog and share photos and other media about your child publicly. It’s not inherently wrong. In the context of an anthology or other formal document, it might even be a good thing, because you are bringing to light different facets of parenting (under your editor and publisher’s watchful eyes). One of my editing projects centred on just such an anthology, so I’m the last person to say none of this information should be available.

Do hear me out, though: it becomes risky, whether you’re doing it for support, or to raise awareness, or to encourage others. I’ll put it very bluntly: your need to feel the warm fuzzies with every careless post is far less important than your child’s right to privacy. Don’t use good intentions as your escape hatch. Once you release personal information, it can’t be recovered. We’ve all heard the lectures. If your physically disabled infant is too young to consent, you should be very strict about what you share. If your mentally disabled daughter is incapable of giving informed consent, you have to be even more respectful of her rights.

Parenthood is not ownership. You are raising people who may be able to view the material you exposed when they were too young (or otherwise unable) to say no. These children are not walking, talking sources of validation. They should not be used as a “like” generator. They do not exist to promote your worth as a parent and you should never treat parenting as reasonable justification for playing the martyr. Most of you would never do any of this, but you still need to put your child first. So please, think before you share. Children have rights, too.

Pleasing The Unpleasable: Say Goodbye To The Middle Ground

If you’ve spent a lot of time on social media—particularly Twitter and Facebook—you might have noticed a diversity spectrum. At one end, (let’s call it right, for giggles) we have people who are passionately opposed to diversity. At the far left, we have people who are equally passionate about encouraging diversity. There’s a whole lot of middle ground, but the opposite ends are usually warring with each other, and those in the centre are subjected to the excesses of both sides.

I’m not sure where exactly I’d place myself on this spectrum—though certainly more left than right—but I think it’s difficult to self-assess these things. It’s nearly impossible to examine my own behavior with an objective lens and decide where I belong. Even diverse and oppressed populations find ourselves unsure of where we stand, especially when we get caught in the intense crossfire. Objectivity itself is disturbingly scarce, in an age when we put less and less stock in fairytales, harmful superstitions (adopt the black cats, guys, pretty please!) and even extremist ideologies. There are a few publications that conduct ethical, verifiable research intended to challenge our cherished, long-held beliefs about the world. They are too few, though, and in a world of black-and-white thinking and instinctive loyalty to one’s beliefs, their voices are not nearly loud enough.

Now, the righthand side of the spectrum is a very real threat. These are the people—usually powerful majorities, but not always—dismissing diverse authors because they’re not “good” writers. They look down on women in comedy because, I kid you not,women aren’t funny. They despise disabled people because we are a drain on the system, robbing them of hard-earned pennies and indirectly taking food from their children’s mouths. (They conveniently refuse to educate themselves; many of us aren’t on benefits at all.) They’re usually the ones promising same-sex couples they’re bound for hell, calling black people thugs, and branding indigenous populations lazy drunks. Their claims sometimes stem from personal, unfortunate experience; even so, their attitudes are obviously detrimental to society. I think many of us can agree with that, at the very least. But …

It would be a mistake to consider the far left pure, just, and incorruptible. The Social Justice Warriors (as the right so affectionately calls them) are genuinely trying to fight the good fight as they see it. Overtaken by their intense fervor, though, they seem to neglect those in the centre of things. They are fighting for what they perceive as justice, but many of them are unwilling to entertain the idea of grey areas, full stop. They don’t appear to acknowledge (or care) that the tactics they so despise from the far right are often the ones they adopt themselves. Take it from someone who is left but not all the way left: more often than not, it’s safer to avoid getting involved, because you’ll feel ineffectual and exhausted in short order. It’s gotten so bad that more than once, I’ve taken a “mental health break” from social media, or at least from controversy. While I have been guilty of this overenthusiastic dog piling, (and may be again), I recognize that it’s largely ineffective and stressful for everyone involved.

If you examine the far left’s strategies more closely, you’ll begin to spot the multitude of contradictions:
• They hate to see diverse populations silenced by the right, but are constantly telling everyone to #SitTheFuckDown, including fellow diverse individuals.
• They occasionally consider evangelism deplorable, yet they preach every bit as loudly and proudly as the religious right. (I personally have no issue with preaching on either side, but it’s still glaring hypocrisy.)
• They accuse the right of being too exclusive, yet will ignore anyone who doesn’t toe the party line. (Try entering a conversation about race or disability if you’re white and/or able-bodied, even when you support the cause and honestly want to know how you can help.)
• They are forever telling majorities, (especially straight, able-bodied white men) to shut up, then accusing them of failing to do enough for the cause. (Either you want them involved or you don’t. Pick one.)
• They criticize majority artists for failing to include diverse characters in their books and movies (which they should, really), but then turn around and berate them for cultural appropriation. This is a very real and very important concept, but it is ill-defined and confusing. (This can be a powerful source of anxiety for writers who want to do the right thing but feel as though they can’t win either way.)

There are numerous voices for marginalized groups who either encourage majorities to get involved, (This book is an excellent example) or at the very least encourage them to boost the voices of diverse populations. These instructions are relatively easy to follow, and they allow white, straight, able-bodied, Cis-gendered males to take part without routinely saying the wrong thing or supporting the wrong people. Others, however, are simply unpleasable: they want you as an ally, but only if you say what they tell you to, when they tell you to. They want you to help, but then dismiss all your efforts because they’re insufficient. They refuse to guide your attempts, then spit on you for making a mistake.

This is not to say that all allies are perfect little angels just waiting to be told what to do, of course not. Many people who want to be allies have suspect motives, condescending perspectives, and narrow minds. Take, for example, the plethora of articles about how “inspirational” people with disabilities are. The gooey rhetoric of the able-bodied can be dangerous as well as irritating, trust me. In my experience at least, you’ll attract more flies with honey than with vinegar: if you calmly and kindly explain why this inspiration porn is not okay, people are generally willing to listen and take note. There will always be those who think they know best, but quite a few people out there are all too willing to learn, so long as we can tell them how best to do so. We can’t blame everybody for stumbling a bit along the way; none of us is immune to a stumble here and there. We need to be more compassionate, we really do.

Sadder still, the unpleasable, comparatively rare though they are, often drive people away from the message they’re trying to send. The medium is the message, so if you convey important ideas via abusive rants on Facebook or angry tweet storms on Twitter, your words will be lost in the mayhem. If you barge into a stranger’s Twitter mentions or Facebook posts specifically to deliver personal attacks and invective, don’t expect them to absorb your message with delight and say “Yes! I shall change immediately.” I recognize the need for anger, and passion, and even temporary preference for justice over mercy. There are many on the far right who do grievous social and even physical harm, and that’s something worth fighting against. So, yes: be angry. Be passionate and stand up for those who cannot do so for themselves. Be unafraid to express what you think is right; after all, I’ve been doing that here for over a year now. Be dedicated in the wish to educate and advocate. I’ll be right behind you.

Take care, though, that you do not push away the very people whom you claim to represent. If I, a disabled person, am bombarded by a barrage of social justice warriors because I dare to have a slightly more moderate opinion than they do, I’ll be tempted to abandon their cause altogether. The quickest way to divide people is to pit them against each other, and forming a “diversity club” is one effective way to do it. Silencing fellow diverse people because they don’t follow your exact specifications is going to damage your credibility and distort your message.

Those who silence others do not represent me. Those who gang up on vulnerable people are not my peers. Those who refuse to accept and guide allies do not help my cause. Those who shame, degrade, and dismiss other diverse populations for the sake of their own agendas are not my friends. The unpleasable are not my allies. If your only goal is to shut everyone up so your own voice is the only one that matters, then go your way. Don’t expect me to follow you.

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

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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

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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.