Author: Meagan H. Houle

Dear Parents: Think Before You Share

Posted by

8

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.

#AbleistScript: Pointless Venting, Or A Sign Of Hope?

Posted by

5

For the uninitiated…

If you’ve been hanging out on Twitter lately, you’re likely to come across the #AbelistScript hashtag. The hashtag is meant to gather tweets from all kinds of people, detailing all the ways the able-bodied have said hurtful, offensive, and discriminatory things. It sounds sort of pointless and bitter, doesn’t it? It’s a bit of an outrage fest, no? Well…

The tweets are incredibly disturbing

This hashtag has revealed far more than the typical “Hey, Helen Keller, where’s your dog?” nonsense. It has revealed deeply unsettling stories—stories most of us would rather ignore. Some “ableist” people are innocent, but misguided.
https://twitter.com/rusty_coyote/status/663461868279754752
Some people are shockingly presumptuous and uninformed.
https://twitter.com/msmejanine/status/663700459065114624
Some lack tact and respect, even when dealing with loved ones.
https://twitter.com/sheep_purple/status/663691511528349696
Some, of course, are downright offensive.

Scary, isn’t it?

It’s more than mere outrage fuel

It’s viral, and for good reason: it is a medium through which we can come together and express the things that make our blood boil. It’s an opportunity for us to release some of the tension, helplessness, and frustration many of us have been bottling. Some of us have kept quiet out of courtesy, or the fear of burdening people. Others are afraid to be perceived as whiny or high-maintenance. Still others feel ashamed of their anger. Do they have any right to be upset? Are they being unjust? Is their suffering legitimate? Are they just “easily offended,” “thin-skinned,” or “obsessed with political correctness?” I’ve no doubt that some people are, but there are too many of us to dismiss our feelings entirely.

I’d like to think our suffering really is legitimate. Life can be very lonely, especially if your disability is particularly rare. That feeling of isolated desolation is emotionally crippling.

We are bombarded by unwanted opinions. Stop taking those medications and deal with your problems. Use the power of positive thinking. The only disability is a bad attitude. Suck it up, buttercup; it can always be worse. Be grateful that you have as much as you do. What you have is more than many can enjoy, so keep your chin up.

This is so much more than a hashtag

You may well ask what we could accomplish with all this public, viral venting. Besides the undeniably cathartic benefits, there are more concrete, long-term goals we can achieve if we reach enough able-bodied people. Much of the “ableist script” can be altered or eliminated. We can clear up misconceptions and debunk myths. We can explain why certain ideas are genuinely harmful. We can foster empathy. We can educate. The internet does a lot of harm, but in this case, it’s a remarkably useful tool. Viral attention can be an asset, and I think we need to pounce on this opportunity.

Some are already feeling hopeful, which is a very welcome sign.
https://twitter.com/saffronbread/status/662810712658608132

We need more than an echo chamber. We must do more than blow off steam. We should strive to advocate for ourselves, but we should not do so at the expense of clarity. We can’t allow our anger to distort our messages or alienate the very people we are trying to persuade. We are capable of intersectional solidarity, and we can put it to good use. Don’t dismiss this purely because it’s a hashtag. In this case at least, it has enormous potential. We mustn’t waste it.

I Put My Trust In Strangers (And It’s No Big Deal)

Posted by

4

Nearly every time I show a stranger how to use sighted guide, they view my trust in them as admirable and brave. “I mean, I could be anybody! I could walk you off a cliff or something!” Some guides are so nervous that they get distracted by the burden of responsibility; this usually results in decreased awareness. I try to encourage them to relax: a nervous guide is usually a dangerous one—or at least an inconsistent one. Even the best guides, though, seem somewhat uncomfortable with the amount of people I need to trust in day-to-day life. I trust guides not to walk me off cliffs, it’s true, (though using a cane in conjunction with sighted guide helps—not everyone does this), and I trust people to be generally decent. I assume that most people will not deceive, manipulate, or harm me. And you know what? Most of the time I don’t give these assumptions a second thought.

All this trust bothers sighted people, though. Perhaps it’s because they are acutely aware of how much they rely on sight to keep themselves safe, so the idea of going without terrifies them. Perhaps it’s because they recognize their own fallibility, and they imagine my inherent vulnerability must far exceed theirs. The most likely explanation is that people worry about me, and want me to be okay. I’ve encountered peers who expressed horror and anxiety when I told them about all the times I’ve nearly been run down by drivers who didn’t feel like obeying general crosswalk etiquette. Fear is becoming a staple of most Western cultures, and that fear multiplies when disabled or otherwise vulnerable populations (like children, for example) are involved. We can’t let kids play out of their parents’ sight, and God forbid we allow them to climb a tree or walk to school on their own. This general anxiety invariably extends itself to shroud any and all disabled people, to the point where the able-bodied are far more afraid for our lives than most of us could ever be. Most of these risks are genuine, and the resultant anxiety has its roots in sensible instinct. I don’t intend to trivialize the very real dangers vulnerable demographics contend with. I don’t blame you for feeling a little overprotective of your children or disabled friends. It’s perfectly natural.

Everyone has to trust sometime, of course. Any time you get into a taxi or board a plane, you’re entrusting your very life to a stranger, whom you hope is well-trained and trustworthy. If you can’t operate a plane, you trust a pilot. If you can’t navigate a brand new area with complete confidence without sight, you trust a sighted guide. It’s that simple.

Now, I can’t discuss trust without emphasizing the need to have that trust honoured. If I trust you enough to let you lead me somewhere unfamiliar, particularly without my cane, you’d better not leave me stranded. If I trust you to obey the basic rules of traffic, you’d better not run me down. If I trust you to describe my surroundings, you’d better remain truthful. These are the basics.

If I’m trusting you to respect me, please don’t use my own blindness against me, particularly in public where opportunities for humiliation are numerous. If I’m trusting you to be my eyes, don’t exclude or invent details just because you can get away with it. If I’m trusting you to treat me like any other human being, please don’t make a spectacle of me. (Disguising your voice in an effort to trick me is not cute.) Finally, if I’m trusting you to keep me safe, don’t warn me of fictional obstacles, or subject me to similar practical jokes. They’re hardly ever funny and they can be more dangerous than you know. When in doubt, ask which ones I’m comfortable with, and if you’re a stranger, assume they’re unacceptable until you’re told otherwise.

This is not to say that I rely on others for every little thing. My readers, in particular, will understand how highly I value independence. If I can do something safely and well on my own, then I’ll avoid asking for help I shouldn’t need. Still, to pretend I never need help is misleading. So, yes: I do put my safety in other people’s hands on occasion. It’s almost never an issue.

I’m at peace with having to trust people, even strangers. I have little choice but to count on human decency, and so I do. In the vast majority of cases, my trust is valued and my faith rewarded. Nine times out of ten, I don’t even think about it, because it’s so intrinsic to my lifestyle. So don’t worry too much. You’re probably a better guide than you know. You’re probably a more accurate, useful describer than you realize. In short, relax: you’re probably doing just fine.

Pleasing The Unpleasable: Say Goodbye To The Middle Ground

Posted by

1

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.

5 Reasons Hogwarts Would Be A Terrible Idea (If you’re Blind)

Posted by

8

Ah, Hogwarts. Harry potter fans worldwide would secretly love to receive an acceptance letter—and that includes grownups. A Hogwarts education would make my communications degree seem pretty dry in comparison. Who needs PR skills when you can modify someone’s memory after the latest publicity scandal? Who needs powers of persuasion when you can slip someone a love potion? (I’m known for my ethics. Ask anyone.)

Since we enjoy overthinking, Gregg and I put together a post that explores what it would be like to be a blind student at Hogwarts as we know it. As with most areas of life, blind people have to face the music: Hogwarts, as described in Rowling’s books, anyway, would be a nightmare. We’d soon be begging to go home to screen readers and staircases that don’t lead somewhere different every day. Speaking of which …

1. Accessibility would be a distant dream.

These days, blind people in developed countries take certain things for granted much of the time. In Hogwarts, though, most of those coping mechanisms would be quite out of reach, owing to the school’s negative effect on electricity and technology in general. Computers, the internet, cell phones, embossers and scanners would all be useless at Hogwarts, forcing blind students and their professors to find inventive ways around these limitations. We would likely be limited to braille, and would need an educational assistant who could transcribe our work and assignments for us. While sighted students could take a trip to the library in order to do research, we would have to get a considerable amount of help to find not only the books we wanted, but the materials within them.
(Can you imagine asking Madam Pinse to help you search through an entire shelf of books? I wouldn’t dare, personally.)

Classes themselves might also be tricky. Potions and Transfiguration often rely on colour as an indicator when a spell or potion has been done right. (Good luck asking Snape to help you with anything ever. Unless your last name is Malfoy, forget it.)
Divination relies very heavily on sight, since most of it seems to involve studying tea leaves and crystal balls. Astronomy might be a little easier, but stargazing without working eyes is out of the question. At higher levels, nonverbal spells which give some sort of visual signal when cast would be much harder to dodge if you weren’t able to see them coming. Courses like Ancient Runes and Arithmancy might present unique challenges, since braille signs would have to be invented for specific symbols. Overall, being a blind witch or wizard would pose significant accessibility problems which, without proper preparation, would certainly make the lives of students and staff much more complicated.
(Uh, Professor? Where is my accommodation letter?)

2. Life would be a game of dodgeball

Hogwarts offers many forms of potential misery for a blind student. Objects always seem to be dropping or flying through the air, and not all of them are as soft as a copy of the Daily Prophet. Charms class is notorious for this, as students are often asked to transport objects from one point to another. The high number of inexperienced witches and wizards around us increases the already high chance of being hit by errant and unintended projectiles. And then there are the owls. Imagine sitting peacefully at breakfast, toast in hand, only to hear a thundering mass of birds descending from on high, most of them bearing objects that they are all too willing to bomb you with as they get close. Speaking for myself, this is not my idea of a good start to the day.
(Oh, look! There’s an owl in my milk jug again!”)

Take orientation and mobility, for instance. Can you imagine how difficult it would be to try and map routes to your classes when hallways and staircases aren’t always in the same place? And speaking of staircases, how about vanishing steps? Every ascent or descent would be an exercise in both patience and luck, as we hoped and prayed that we didn’t find ourselves trapped when a solid stair suddenly disappeared beneath one foot. Many of these trials might be alleviated by helpful students and professors, of course…but what of the portraits? The halls of Hogwarts are full of paintings all too willing to lend their voices to the chaos, and it would be easy to end up in even worse trouble by following one well-meant bit of advice or another.
(Um, thanks, Sir Cadogan…but I think I’ll just follow my heart.)

3. Get ready for the practical jokes.

We all know how much students enjoy messing with each other via hexes, jinxes, and bewitched sweets that make you turn into a canary. Imagine making yourself even more of a target simply by revealing that you’re blind. The slytherins would have a field day and, let’s be honest, Fred and George might, too. We’d like to think the twins have a sense of morality, but who really knows?

We can’t see spells coming or react to them very quickly. Even if we are expecting them, we’d have to remain in a state of constant vigilance (see what I did there?) at all times. School is stressful enough without having to hide in the common room under a pile of books we can’t even read. Madam Pomfrey would get to know us in a real hurry.

Who says all the interference would come from students? We wouldn’t put it past Snape to slip something in our drinks if he suspected we’d been stealing his bezoars again. At Hogwarts, nothing is sacred.

4. Say hello to mass marginalization.

Blind people are marginalized enough in our own world, and we don’t imagine the wizarding world would be any kinder to us. Forget (mostly) harmless practical jokes: we might be facing total exclusion from significant portions of Hogwarts culture. Picture it: the Great Hall is buzzing with excitement. A quidditch match—the most important of the season—is about to begin. We go outside to the pitch, and try to follow the game using the patchy commentary Rowling’s characters tend to provide. We’d have access to tiny snatches of what’s actually happening, but pick up most of our cues from crowd reaction. This is not unlike other sports, but with other sports you have professional commentators. Oh yeah, and forget actually playing quiditch. Even if we could devise a way to play, I don’t think anyone would be willing to let us try.
(Oh, well, we would…but the paperwork, you know…)

I can’t even guarantee that Dumbledore would step in. He’s not exactly known for being on the ball. He’s a great man, we know, we know…but pensive and constantly-absorbed would be putting it mildly.

Then, there’s the darker side of the coin. The wizarding world is as filled with bigotry and hatred as our own, and since the community is so insular, it’s even worse. We already know how shabbily “half breeds” are treated; even gorgeous, powerful centaurs aren’t immune to ministry prejudice and control. Imagine, then, how blind people might be treated? At best, we’ll be “taken care of”, and at worst, we’ll be the recipients of unspeakable hatred. I don’t think Voldemort and his band of merry Death Eaters would object to polishing us off for the fun of it.
(Where am I? Where am I? C’mon, guess! How many fingers am I holding up? Crucio!)
This brings us to our next point…

5. We would always be a liability.

Time and time again, we’re told how, in the heat of battle, it is difficult to dodge all the deadly curses flying about. As we’ve already mentioned, being endangered by flying things would be one of the most significant issues exacerbated by blindness. As Rowling has already shown us, Hogwarts is not a perfect stronghold. During the multiple battles that have taken place there, we would not have stood a chance. Even if we were capable of avoiding stray spells long enough to duel with someone, I doubt many wizards would allow things to get that far. Dumbledore would hide us behind reanimated statues, and the rest would banish us to dark corners where we won’t be hurt. Of course, what this translates to is “You can’t hold your own, and you’re a liability. I don’t want to have to worry about you while I’m fighting the good fight.”

The general assumption that blind people can’t defend ourselves is completely bogus, though there are some undeniable disadvantages that make us prime targets. However, all the self-defence skills in the world won’t save you from a ricocheting killing curse.
(On your left! Your left! Sorry—my le–Oops…)

It’s pretty depressing to be “in the way” all the time, and that would only get worse at Hogwarts, where people are in a lot more peril than any “normal” kid would ever be.

But wait—it’s not all bad!

With all the things that might go badly for a blind Hogwarts student, we would be remiss if we didn’t mention a few potential perks. Whether or not they act as suitable compensation for all the headache, though, is up for debate.

You might be immune to the basilisk’s stare. I say “might” because we frankly don’t know enough about how exactly that petrification spell works. And nothing stops the beast from biting you just because you can’t see it, so this is a mixed blessing.

Invisibility cloaks aren’t quite what they’re cracked up to be. In the novels, when Harry and friends don the cloak, it’s as if they disappear completely. People rarely hear, smell or sense them as they pass. Being blind means that we’re likely to be more aware of what our other senses are telling us; as such, it would be harder to slip past us while wearing an invisibility cloak.

The Mirror of Erised would be powerless against us. This device is supposed to show you your greatest desire when you look into it, but without the ability to see, the mirror would be nothing more than a sheet of glass in a peculiar frame.

So, friends all, don’t despair if you don’t receive your Hogwarts letter. You can probably put your time to better use anyway. For example, you could go out into the community and be a general inspiration! Wouldn’t that be nice? Who needs witchcraft and wizardry, anyway? Not us!

No, I Don’t See With My Heart

Posted by

8

I’ve come across a persistent myth concerning blind people and their near-angelic status. The sighted world is so shallow. The sighted world is so intolerant of diversity. The sighted world is so afraid of difference; so obsessed with outward appearance; so incapable of appreciating the “inside”. Blind people, on the other hand, “see” with our hearts. We possess heightened compassion and tolerance. Further, because we don’t have access to vision, we could not possibly criticize others for being shallow. After all, what do we know? We have never seen. How can we condemn what we don’t understand?

This perspective is so persuasive that at least one study has been conducted to find out whether blind people are capable of being, say, racist, reasoning that our inability to see colour must make us immune to racial prejudice. Yes, of course we are capable of prejudice. This is not news, or at least it shouldn’t be.

Think about it: race is so much more than pigmentation. It’s a socially constructed system in which we choose to group people into racial categories, then attach specific traits to those groups. This is how society decides that “Mexicans are lazy” and “black people are thugs” and “white people are respectable”. These labels transcend colour. People are not offended by or prejudicial towards a black person because they don’t like their skin. Racism is so embedded in our culture that nobody, not even a blind person, could escape it. I suppose you could argue that we may not judge as readily if we don’t yet know a stranger’s race, but all I have to do is hear a particular accent to commence judging immediately. I try not to, of course, but even I know it’s a mistake to pretend I don’t.

It is also somewhat unreasonable to assume there are few, if any, blind people who are shallower than cookie sheets. So much of society is busy branding the underweight as skeletal; the overweight as lazy; the attractive, desirable; the unattractive, undesirable. Blind people must be incapable of and therefore unable to appreciate or reject someone for their outward appearance, right? Nuh uh.

The thing is, fat (or lack of it) is not a purely visual concept. All it takes is a hug for me to know a fair bit about what you look like. I could take a guess at your weight, and judge the clothing you are wearing (to a certain extent anyway) and assess the attractiveness or unattractiveness of your general shape. Don’t be fooled into thinking blind people don’t fat shame. We understand what fat is, and we are almost as susceptible to instinctive judgements as anyone else. I recall reading a story about Tommy Sullivan, a blind pianist, who pretended to drop something so he could scrabble around on the floor for it. He very conveniently managed to grab the nearest woman’s leg in the process. I believe it was Ray Charles who, upon gripping a woman’s arm, allegedly grimaced with disgust when he realized how plump she was. Anecdotes like these, whether true or false, suggest that blind people can be just as shallow as the average sighted person. If a blind person tries to claim they are above reproach and incapable of shallow discrimination, please do set them straight.

Consider voices: no two voices are identical (mostly because accents and various linguistic quirks make them more distinct) and while most of them are neutral to me, I find some very attractive and some…well, not. Try as I might, I can’t escape the tendency to judge based on vocal qualities. A grating voice might put me off. If a person uses an excess of vocal fry, says “like” a little too often, or has an otherwise unusual or irritating voice, I’m going to have a harder time interacting with them until I get to know them a bit better. It’s equally easy to be drawn to a lovely voice, as well. Some people become distracted when they see a gorgeous person. If you have a gorgeous voice, I’m going to get distracted, too. (If I ever meet Morgan Freeman, I’ll be in trouble.) It’s a perfectly natural aspect of human life and, while sighted people focus less on this because their vision is more demanding, blind people are especially vulnerable to this bias.

Scent and touch matter, too: perfume and cashmere aren’t marketed exclusively to blind people, after all. I think sighted people frequently underestimate qualities outside of visual beauty. There are probably a lot of traits you find attractive in others, but you’re not conscious of them because you’re busy appreciating what they look like. If you concentrate, you might discover a few new attributes.

Then, we come to the idea of automatic compassion: it’s true that, in my personal case, blindness has allowed me to step outside myself and consider the difficulties of others. This sensitivity may just be a component of my personality, and not a direct result of my blindness, though. I certainly think it helps–empathy goes a long way–but after years of interacting with the rest of the community, I know just how intolerant, bigoted, and “shortsighted” we can be. I’ve scrolled through numerous discussion forums, watching scores of blind people displaying alarming amounts of homophobia, racism, sexism, and even ableism towards other disabilities. Hell, I’ve even seen them turn on each other, accusing people of handling their blindness badly, or giving us a bad name, or simply doing life wrong. Where is all this inherent compassion we’re supposed to be born with? Where is this innate avoidance of judgment? I’ve witnessed just as much judgment and intolerance in the blind community as anywhere else, maybe more.

Sure, there are many of us who try to see past the surface, understand multiple perspectives, and acknowledge that since we have never known sight, there may be a lot of things we’re missing altogether. But to tell me I don’t “get it” because I’ve never seen someone? To tell me I will never understand fat shaming or racism or ableism because I can’t see? To tell me I can’t criticize it because I don’t know what it’s like? That’s a very dangerous (and condescending) viewpoint. This assumes that being unable to see makes me into an angel of compassion. I’m nice enough (I hope), but not angelic. So please: don’t deceive yourself by imagining that we are too busy seeing with our charitable little hearts to find fault. Our humanity is neither diminished nor enhanced by disability, remember that.

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

Posted by

16

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.

“What’s Happening?”: on the Importance of Described Video

Posted by

2

Described video for the visually impaired is becoming far more widespread in recent years. You’ll often hear “this program is presented with described video for the visually impaired” before The Simpsons, Law and Order, or some other popular TV show. It’s becoming commonplace for movies, too; if you buy a movie, you can often go into the menu and select the described version. It’s not ideal for sighted viewers, of course. The disembodied voice describing detailed versions of what they are already seeing drives some of them crazy, which is why I never insist that they watch the described movie with me. Some, however, think it’s the most entertaining way to watch a movie. These people are very special.

Described TV shows and movies are still regarded as a bit of a luxury (opinions vary) and it’s certainly not a life-or-death situation if someone fails to describe an episode of The Walking Dead. There are times, though, when description is not only helpful, but necessary. Take a look at this PSA about bullying. It’s not as though watching these announcements is likely to save a life, but if they are meant for the “public”, then that public needs to include visually impaired people. Excluding a sizable demographic of the world’s population doesn’t make a lot of sense, especially when there is almost always captioning present for the hearing impaired, and subtitles for those who speak different languages. Shouldn’t we be included, too?

Many of us grew up without described video, even for movies and TV shows, and we still managed to enjoy them as much as sighted people. Sure, it was somewhat restricting, especially for horror and action films, which tend to be a little short on expository dialogue. Either we watched shows that had enough dialogue to go by, or we enlisted a friend or family member who was willing to describe the most important bits to us. It’s not as though we need lavish descriptions; we’re not asking for the moon on a stick. We don’t need to know whether the protagonist is a “dazzlingly beautiful young woman with long blonde ringlets, high cheekbones, and a willowy figure”. Those details are nice (though some describers go a little overboard) but not at all necessary. Very few people need that amount of detail to get the basic gist. I had a friend in junior high who loved describing so much that we’d get together and have movie marathons. He was so dedicated that, for fast-paced movies, he’d get up, hit pause, and describe everything going on. It was lovely. I miss him.

Meaningful description isn’t an unreasonable expectation. People are often hired specifically to provide captioning for the deaf and hearing impaired, so why are people seldom hired to provide descriptions for the blind and visually impaired? There are agencies devoted to describing movies and TV shows, but they don’t usually cover public service announcements and similar videos. Really, they shouldn’t have to.
Description isn’t an extravagant demand made by angry blind people who want to be catered to. Description makes good sense. Nobody bats an eye at providing subtitles and captioning, and it’s time the industry started acknowledging other accessibility challenges as well. There may be other demographics with accessibility restrictions that I don’t even know about, and they need to speak up. If you want your ad or announcement to reach as many people as possible, you’ll need to use inclusive methods of communication. Remember that iconic Super Bowl PSA about domestic violence? It reached us because it had enough dialogue for us to fully understand what was happening. That PSA is a work of art on quite a few levels.

Hey, marketers: you’re always devising new strategies for reaching more people. Description is to your advantage. Many commercials are totally dialogue-free, to the point where I don’t know what half of them are trying to sell me. I’m saying this in a whisper, because no one really likes ads, but maybe invest in some accessibility consultants? It might help your cause.

I’ve written about when accessibility is necessary and when it’s simply helpful. I’m not expecting all my Facebook friends to start describing their cat videos (although I wouldn’t say no to that). I do, however, encourage people to think before they publish. Ask yourself whether this video is important enough to reach millions or even billions of people. Then ask yourself whether it is going to reach as many demographics as possible. If the second question is a no, then start exploring accessibility, for us, and for everyone else, too.

Don’t Mess with the Stick

Posted by

15

While I’m not nearly as attached to my cane as other blind people are to their guide dogs (for obvious reasons) I still like having it around. It’s my mobility tool of choice, and it works well for me. More than that though, it represents security. A cane will almost always tell me what’s directly in front of me. It helps me walk in a straight line, because I can trail along walls, sidewalks and so on. My cane is a major contribution to my independence.
The cane is called many things, some of them peculiar: I’ve heard people call it my “helper”, “walking pole”, and even “special friend”. One older gentleman approached me and asked me whether I hike; “I have one like that, too,” he gushed. It’s hard to keep a straight face, let me tell you. I don’t mind if someone refers to it as my “stick”, but some blind people are particularly sensitive about it. If you’re unsure, just use cane to be on the safe side.

People are sometimes unaware that it’s important to me. They don’t know that it provides a degree of safety I wouldn’t otherwise have. They treat it like any other ordinary object, much the same way you’d treat a coat or backpack. They handle it like something they can take away from me.

When I enter someone’s home, I will often allow the cane to be taken away, for the simple reason that bringing a cane into a house is akin to leaving your shoes on—something that simply isn’t done in my culture, at least. It’s been everywhere my shoes have been, so it’s often trailed through mud, snow, and … other things, of which I prefer to remain ignorant. Unless I feel really uncomfortable navigating a strange house on my own, I will be glad to store the cane and use sighted guide instead.

In all other places, though—including and especially outdoor areas—I insist that my cane remain in my hand and under my control. If I’m left in an unfamiliar area without my cane, I become far less secure in my environment. I’ll walk much slower than normal, in case I bump into something. I tend to shuffle along, because I’m feeling my way with my feet instead of a cane, searching for tactile feedback. I will rely even more heavily on my hearing, so that I stand a chance of detecting larger obstacles like pillars, which create sound shadows. I never feel as blind as when I don’t have my cane with me.

Even when I have it handy, people fail to respect boundaries. They’ll lead me by the cane, pull it out of someone’s path, or even insist that I let go altogether so they can guide me (something I seldom allow). I acknowledge that it really does get in the way sometimes. If I have one hand on a guide’s elbow and the other on my cane, my hands are both occupied. My sighted guides often end up carrying trays, drinks, and other awkward objects I can’t put in a backpack or dangle from my arms. I hate that they have to do this, though they are almost always glad to accommodate. Then of course there is the issue of grace: canes are meant to bump gently against things—that’s what they’re for. If I don’t encounter something with my cane, I usually don’t know it’s there at all. Inevitably, my cane will bump things like ankles and—in one unfortunate case—more sensitive bits. It occasionally trips people, though that can be a symptom of distraction on their part. So, yes, it does make life harder for those around me, especially if they’re not paying much attention.

Although it gets on everyone’s nerves (including my own), I refuse to go most places without my cane. Indeed, when I’m without it, my right hand feels awkward. It’s not used to hanging limply, as though it’s uncomfortable without something to grasp. It’s absurd, really, but without my cane I feel slightly unbalanced. There’s something off about going without, unless I’m in a very familiar environment. Mine is collapsible, so it’s easy to bring it everywhere and fold it up when it’s not in use. That way, it’s there the moment I need it. The cardinal sin of cardinal sins: never, ever abandon me in an unfamiliar environment without my cane. If I’m trusting you enough to go anywhere with you sans mobility tool, don’t break that trust.

I sometimes wish people would respect and tolerate the cane the way they respect and tolerate guide dogs, which are far more conspicuous. My cane can’t bark, play, or scrounge for food, after all.

I hope this post has adequately explained why you shouldn’t mess with my stick, why you mustn’t insist that I leave it behind, and why it’s necessary to witness the stares I’ll invariably get. It’s just one of those things. So please—leave the stick alone.

Accommodation with a Side of Guilt, Please

Posted by

12

This evening, I went out to dinner with some friends. I ordered a dish I’ve eaten many times (a salad) only to find that they’ve begun presenting it in a new way: the dressing was in a small cup on the edge of the platter, rather than atop the food as it usually is. I froze, slightly embarrassed. I’ve always had trouble dressing my salad if it’s in a cup. Squeeze bottles? No problem. These give me a certain degree of control. Cups, however, are a different story. (Disclaimer: some blind people have no issue with these whatsoever.) I was just about to ask someone at my table to help when our extremely-attentive server materialized at my elbow:
“Do you want me to take this back and dress it for you?”
“Um…no, it’s okay…it’s just a bit awkward—“
“I totally understand. Don’t worry about it. I’ll be right back.”
Away went my plate. The server appeared several minutes later, saying “Here’s your salad. We have a special rule here where each time food is sent back for any reason, we have to actually make a new dish. So, we just made you a new salad and dressed it for you.”
I was stunned. I had just inadvertently wasted an entire plate of food so that someone could put dressing on top of my salad for me? Forget being slightly embarrassed: I was mortified and, I confess, a little ashamed. While the server reassured me that it was all okay, I silently asked the powers that be to disappear me immediately. They did not oblige.

I’m used to being “accommodated”. Indeed, I often expect it: when I enroll in university classes, each of my instructors is given an accommodation letter, which describes the accommodations I’ll need to participate fully in the classroom. (If I sound like a handbook, that’s because I wrote one—no, really!) I also expect workplaces to make (reasonable) accommodations to the work environment. This is something I’ve been encouraged to view as normal and acceptable. As is typical for me, I have felt heaps of unnecessary guilt over accommodations, even when they are deemed “reasonable”. Once, in ninth grade, my science teacher got together with a few others on staff and made me a periodic table, so I wouldn’t have to use the rather inadequate one in my textbook. My junior high Industrial Arts teacher went out of his way to make sure I could try out all the same equipment everyone else could. He even positioned the end of a nail gun while I fired, showing a remarkable lack of concern for his fingers. (If you’re reading this, I want to thank you. I’ll never forget that one.)

When people go above and beyond the call of duty for me, I feel grateful (healthy) and horribly guilty (unhealthy). Instead of simply thanking people and getting on with things, I waste time and emotional resources worrying about how undeserving or inconvenient or high-maintenance I’m being. While the person who is helping me is busy doing me a favour, I’m busy coming up with all the reasons I shouldn’t be accepting it. Even when I do accept it, as I did with that salad, the shame and humiliation will plague me for days. Yes, you read that correctly: days. This particular incident was so awkward that I’m amazed I didn’t start crying right there at the table; goodness knows I wanted to.

As far as the server was concerned, she was helping a gal out, no more no less. I have no idea what the kitchen staff thought, though I wouldn’t be surprised if they were about a dozen different kinds of exasperated. As far as I was concerned, I’d manage to waste food, fill my server’s time with running back and forth (in a very busy restaurant, I might add) and make a fool of myself all in about five minutes. I’m cringing as I write this, but the more I think about it, the more I realize it needs to be discussed. There are probably a lot of people out there who have felt how I’m feeling right now.

I’m trying to be okay with being accommodated. I’m trying to be at peace with accepting help, and depending on others, and even letting people do me favours now and then. Could I have dressed the damn thing myself? Of course. Would it have been less messy and awkward to have someone else do it? Absolutely. Did I force anyone to do it for me? No. Am I still going to feel awful about it for days to come? Yup.

But should I feel guilty? Most people seem to think I shouldn’t. Accommodations are there for a reason, and in many cases they are universal enough to be made into policy and/or law. But just because it’s not in a handbook or policy statement doesn’t mean it can’t and shouldn’t be done. While imposing unreasonable accommodations on people at work, school, and elsewhere isn’t going to further the cause, it shouldn’t mean that any random act of kindness ought to be rejected.

Should we make a habit of letting people do things for us, especially when we’re capable of doing them ourselves? If you know me at all, then you know I’d never suggest such a thing. However, this does mean that we should be comfortable with accepting what people want to give us now and then. If it’s not a sin to let someone carry your heavy bag, or hold open a door, or grab you a drink (all things sighted people let others do for them on a regular basis) then why not let someone offer kindness if they really, really want to?

I’m learning, guys. I’m learning. But for now…I think I’ll go and have that cry.