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.


FAQ: Improving the Accessibility of Social Media Posts

Last week, I published a short article listing the most common inaccessible posts sighted users tend to make. While it was not meant to instruct, I did intend to shed light and raise a little awareness. I refrained from advising sighted people to alter their posting habits in any way; I did not want to give the impression that I believe they are somehow responsible for making any and all material accessible.

Once the post had been published, though, several sighted people expressed gratitude, and were eager to make minor adjustments to their social media practices for the benefit of their blind friends and followers. Immensely pleased by all the enthusiasm, I agreed to write a brief Q & A, covering the most basic aspects of social media accessibility. And here it is.

Note: I’m using Facebook as a starting point, though many of the same general rules apply on other social media platforms.

Q: What should I do when uploading a photo?
A: If you upload a picture of your own, there will be no caption or description by default. A screen reader user will hear a string of meaningless numbers and letters (this is how photos are rendered) and that’s about it. They will know you posted it, but unless the accompanying comments provide context, it is impossible for a blind person to interact with your post. Most blind users will be perfectly happy with even the briefest description. For example, if you post a picture of your cat, you need only mention its name. Your blind friends don’t need to know all the details; if they are truly curious, they can contact you for more information.

Q: What should I do when sharing a photo?
A: When sharing a photo from someone else’s page, you may get lucky: there might already be a description or caption attached. Blind users can often interact with shared photos, because either the comments or the description provide enough context. If, however, the photo stands alone, you may have to add a short description, which is very easy to do, especially on Facebook where space is not at such a premium.

Q: What should I do when sharing screenshots and text embedded in images?
A: Many sighted people don’t realize that text embedded within images is completely inaccessible to screen reader users. The reader interprets the image as a graphic, and cannot recognize the actual text inside it. In this case, you may actually have to write out the contents in plain text so your blind friends can understand it. If it is a particularly long post, (or, as in some cases, the post is a lengthy article constructed entirely of images) it may be wiser to wait for a blind person to request information. Don’t spend ages writing everything out before you know whether your efforts are necessary.

Q: What should I do when posting from Instagram, Pinterest, or other largely-visual platforms?
A: Again, you must consider what you’re posting before making a decision. If you’re posting from Instagram, and it’s just a picture of what you had for breakfast, write a quick, plain text description like, “Look at my scrumptious chocolate muffin!” Blind users will understand the gist; they don’t necessarily require lavish descriptions of the muffin’s various attributes. Keep in mind, though, that most blind people understand that Instagram and similar platforms are primarily intended for sighted people. As such, it is not a sin to post visual items from those sites without taking the time to describe every single photo. There will be certain things we just can’t access properly, and most of us are totally fine with it. It’s not life or death, after all.

Q: Can you give me some general advice that will cover everything?
A: Yes. The best general rule is this: perform a cost-benefit analysis. If what you are sharing is important, taking steps to make it accessible is greatly appreciated. If you run a business or promotional page, you are obligated to make your content as accessible as possible. I recently admonished the CNIB for posting on Facebook without including a description of the photo they’d uploaded!
If you’re just posting on your private page, though, don’t worry too much. Blind people may skip past four out of five visual posts without being particularly bothered about what they’re missing. If you’re worried, extend an invitation to them, encouraging them to contact you when they want more information. That way, you never waste your time adapting things no one will benefit from.

Your time is valuable. Thank you for the minor adjustments you make for us. They don’t go unnoticed.

10 Bits Of Facebook I’ll Never Quite Get

These days, it’s rare to see actual statuses being posted to Facebook and Twitter. When I scroll through my newsfeed, the majority of content looks like this: “so-and-so shared a photo”, followed by a string of incomprehensible numbers and letters (which is how a screen reader interprets an image). Much of Facebook is totally visual now, so my level of interaction is lower than I’d like. Here are just some of the aspects of the network that I’ll never be able to grasp.

1. Pinterest—pictures galore, and I can’t appreciate a single one.
2. Photo sharing—people do this to excess on Facebook, and of course I can rarely figure out what’s going on.
3. Selfies—it doesn’t seem like I’m missing out, mind you.
4. Articles that use images—many, many times, an interesting article is unreadable for me because the text is embedded within images. Sadface.
5. Instagram—that whole platform, besides the occasional video, is a no-blindy zone (which makes sense, of course, but it still sucks).
6. Cute, fluffy creatures—every now and then I get to listen to a den of kittens purring away, but generally I miss out on the kittens and puppies that dominate my news feed.
7. Graphic design and visual art—I have friends who are tattoo artists and graphic designers, and they use Facebook as a promotion tool. I can’t applaud them for their work. More sadfaces.
8. Dialogue-free videos—and there are so many of these! I get to hear pretty music, but most of the time I haven’t a clue what any of it’s about.
9. Viral nonsense—people do love to share videos and articles on sites like Upworthy, but often the article is just a bunch of images. Other times, the video player is either inaccessible, or missing altogether.
10. Virtually anything on Tumblr—again, people love to link to Tumblr content on Facebook, but more often than not, I just can’t access it. I don’t know if I’m just unlucky, but I have never, ever had success with Tumblr.

So, if you notice that I never “like” your posts, or comment on your content, please understand that it’s probably because I don’t get most of it. Never fear: if I’ve added you on Facebook, I like you, I promise.