On The Outside Looking In: Why Facebook Is A Terrible Friend

I remember a glorious time, back in, say, 2009, when Facebook was a legitimate way to keep up with people I cared about. Most of the content was generated by real-life experiences my friends and family were enjoying (or enduring as the case may be) so I was able to participate quite easily. And then…

After a couple of years of relative contentment, a new trend emerged: personal, original content was largely replaced by external content (usually photos). Every time I scroll through my news feed, I encounter shared posts about well-loved photography, inaccessible articles, and random pictures of, I dunno, cats. Sheepish as it makes me, I must admit that I feel more and more isolated. I can no longer participate as fully as before. I can no longer keep in touch in any meaningful way.

I’ve discussed how to make posts more accessible on Facebook, and reassured sighted users that they don’t have to describe every single photo, whether personal or shared from an external source, in expansive detail. It’s way too much bother for limited reward. I can’t pretend it doesn’t make me feel like I’m being excluded, though. Instead of hearing about the antics of my friends’ cats, I miss out entirely because photos tell a better story. Instead of enjoying a new recipe a friend posted, I get to scroll right by because the text is inaccessible. Instead of laughing along with my friends’ favourite image-based jokes, I get to hope that the accompanying comments will give me enough context to go on. Most of the time, they don’t, and while I occasionally ask for explanations if I’m really intrigued, I hate to do it. Ain’t nobody got time for that.

I thought perhaps my feelings were exaggerated. How much of my feed was genuinely hidden from me? I wanted to find out, so I performed an informal experiment. I scrolled through the last hundred posts in my news feed (yes, it took ages), “hiding” all the posts that featured only photos shared from external sources. Eighty-six percent of the posts were eliminated. It was even worse than I’d thought. While I can comfort myself with how clean and clutter-free my news feed is, that comfort is awfully cold.

I’m probably not missing much in the grand scheme, I know. Considering all the other consequences of inaccessibility, this is really small potatoes. Even so, a lot of my friends and family spend so much time appreciating other people’s image-based posts (some spend hours on Facebook per day) while I spend five minutes, tops, because there’s nothing to see. (Yes, it does wonders for my productivity, but still!)

I’ll get over it, I really will. Most days I don’t even think about it; but I admit to moments of weakness when I let it bug me. Social media can make people very lonely, and this is a special type of loneliness that won’t ever go away, not really. Facebook is implementing groundbreaking image recognition technology to help blind people figure out what’s in an image, but there’s no telling how accurate or useful it will be.

Like I said, most days it’s no biggie. Just for now, though, I’ll have a bit of a wallow. Indulge me.

Satire: 17 Easy Ways To Make A Blind Person’s Day

1. When introducing yourself, use loud, exaggerated speech. Since we’re blind, it’s safe to assume we’re a little dim, too.
2. Don’t speak directly to us. It’s always best to talk over our heads like we’re not there at all, especially if you are offering a service. Example: “What would she like to order?” Be sure to ignore our attempts to answer for ourselves.
3. Grab or otherwise manipulate our bodies whenever and wherever you deem necessary. For example, if you intuitively perceive that we’re going the wrong way (even if you haven’t asked where that is) just snatch the nearest limb and lead on, Macduff!
4. If you aren’t in a position to grab us, you can always shout instructions in the hope that we’ll know what you’re talking about. If we look baffled, just keep repeating the instructions in an increasingly frantic tone. We’ll clue in eventually.
5. Remind us often how grateful we should be that people are willing to provide accommodations for us. While it’s unlikely that we will ever, ever forget this for more than five minutes at a time, it’s a good idea to slam the thought home when we’re not expecting it. It builds character.
6. Stage loud conversations about us while we’re in the room, because we won’t hear. If we hear, it’s okay, because we won’t understand. If we understand, it’s okay, because we won’t care.
7. Keep all conversation firmly focused on blindness. If we try to interject by discussing our education or interests, just redirect us. We get carried away trying to be all normal, so it’s helpful to keep us on track!
8. Be sure to describe all the other blind people you’ve ever met, in extravagant detail. We couldn’t be more fascinated by that blind guy who skied, and that other blind guy who went to school with you, and that blind girl you met on the train once—the one with the cute puppy…
9. Make a habit of asking us why we’re “here”. If we’re on the bus, ask us why we’re out alone. If we’re at work, ask us how we got the job. If we’re in class, ask us why we’re in university. If we seem offended, ignore us: deep down inside, we really enjoy presumptuous interrogation!
10. Dispense advice about how we should live our lives; the less you know us, the more valuable your feedback will be. If you need a good starting point, you can begin by analyzing our mobility tool of choice (cane or dog) and emphatically demanding that we switch. We love that.
11. Involve yourself in our love lives, specifying exactly the type of person we should date and why. If you think we should date a sighted person because they’ll be able to take care of us, we’ll want to hear all about it. If you think we should date a blind person because we should “stick to our own kind” we will be all ears!
12. Give us things—money, coupons, whatever—because you pity us and want to make our day better. Don’t be phased by any apparent expressions of confusion. (“Oh, that’s just my gratitude face!”)
13. Stop us on the street and thank whomever we’re with for helping/taking care of/being so kind to us. It’s not as though we have real friends who genuinely enjoy our company. No: if we’re out with a sighted person, they are fulfilling a purely charitable role. They will appreciate your praise, and we will feel extra extra grateful!
14. Place your hands on us in any public place and pray. If we gently explain that we don’t want to be prayed for, rest assured that it’s just the secular cynicism doing the talking. When our sight is miraculously restored, you’ll be the first to know.
15. Make as many potentially dangerous practical jokes as you can think of. A few good ideas include warning us of imaginary obstacles (“Watch out for that tree-just kidding!”), concealing our possessions, and encouraging us to “find” you while you run gleefully around us in circles. These were a staple of primary school, and I treasure many pleasant memories from that era. Do me a favour, and bring back the nostalgia!
16. Refer to us as “that blind person” even after you know our names. Blindness is so integral to our identities that our names are really just decorative, so there’s no need to remember or use them. If we fail to answer to “Hey, blind girl/guy!” just keep trying. We’ll learn to love it.
17. Assume that our default status is “Help!” If we reassure you that we’re okay, thanks, don’t fall for it. Insisting upon rescuing us every time we cross paths places us into a position of dependence, which is exactly where we belong.

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.

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

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.

Some people are shockingly presumptuous and uninformed.

Some lack tact and respect, even when dealing with loved ones.

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.

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)

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.