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.
Thank you for writing this post. I whole-heartedly agree with everything you said. I hope you don’t mind if I share it on my Facebook page, please tweet me if you mind.
I’m very glad you liked it. I knew I was stepping into some dangerous territory with this one, so I hope others feel as I do.
it’s not just parents who should be careful about what they share online or whether they share photos or video footage of their kids but I think it should go without saying that we all should be careful what we share and where we share it. as the saying goes, there’s a time and a place for everything and sometimes discretion is certainly advised
Yes, everyone should certainly use discretion, particularly when posting about someone other than themselves. Still, one has to tackle one issue at a time, and writing a general article about how everyone should just be careful would be rehashing many, many others.
Thank you for posting this. Most parents with Autistic children can’t get past “my child has meltdowns, and will all their life”. They don’t get it we do grow up, and many cases do have jobs, friends, and things we don’t them to know for instance that I use to kick my mother in the chest during a meltdown. With me it is no issue to share, I want it to be out there so the parents of these kids are willing to listen to someone has been there, and lived a life like their child. Not all Autistic adults feel like I do though. They don’t want to either talk about their childhood, or worse have someone who is biased (rather common with parents of Autistic children) on what their child was thinking/feeling/wanting, opinion be easily found on the internet. My own mother would have spent her days complaining how hard it was to be her, and how horrible I was. (Even with me not something I want a future boss to see).
The child was most likely feeling something totally different. Kind of like when it comes to trying to explain to someone what you can or can’t see. They understand seeing, but not what you are seeing, feelings are rather worse though.
You make an excellent point. It saddens me that so many kids are put in this embarrassing position.
This is such a great post – thank you for writing it and for including me! I really love the ideas you’ve raised around consent and also intent.
You’re right – it is an often unpopular opinion and I copped a lot of flack for writing it, but I stand by my opinions and words.
I have a follow up piece planned for my blog – I will be linking to yours. Thank you. So glad I found your blog.
Hi, Carly! I’m so pleased that you liked the post; I always get nervous when linking to someone else in case they disapprove of the reference. I look forward to your follow-up post, and am flattered that you’ll be linking back to me!