Assumed Consent: Why parents need to let their disabled kids have their own say

Parents of children with special needs should be careful before posting stories, photos or videos about their children online or on social media, says Lisa Lightner of A Day In Our Shoes and a MomSpeak blogger.

Have you ever been tagged in a completely unflattering photo on Facebook? I mean the kind when you look at it, you groan and debate in your head if the person will notice if you untag yourself? It’s awful, right?

Social media and smartphones have brought us a whole new set of societal rules and expectations. It is almost hard to remember a time when absolutely everyone didn’t have a camera in their pocket at all times, with the ability to publicize that photo to millions of people with just a few taps.

So what about our kids? Kids and internet privacy is a huge issue. Many schools, teams, and other kids’ groups have rules regarding parents taking photos at events.

Ok, so what about our kids? What about kids with disabilities?

They deserve even more protection. And more and more I am finding scenarios when it is their own parents who have not protected them. All in the name of “advocating” or “I am helping him and kids like him!”

Uh huh, are you?

Examples of Assumed Consent

A few years ago in a Facebook group, a parent needed some help. I don’t remember the exact age of the child, a tween if I recall. And in order to ask for help, he posted a video. The video was his child sitting on the floor in nothing but a diaper. Who wants a photo or video of themselves, wearing a diaper, plastered on the internet for strangers to see? No one I know.

Sadly, that is not the first time I’ve seen that and had to say something to a parent. That might be a basic lack of common sense. Others are not so obvious. (Yes, I acknowledge that perhaps the parent has their own issues, their own learning struggles or lack of filter. Well, then, he needed someone to tell him that it’s inappropriate to post photos of kids in underwear. Anyone’s kids. Predators love photos like that.)

One time, against my advice, a parent did a media interview. I advised her against doing it.  Then I advised her against doing it alone. She did it with no one beside her. Her teenage son was attending a special day program at our local vocational school. When the article came out, it mentioned him by name and stated that he “had the mental capacity of a 3-year-old.”

So, from now until the end of time, any time anyone googles his name, that article will come up and the reader will learn that about him. But mom was well-intended, right?

You know what they say about good intentions.

Parents, we need to really think this stuff through with our disabled kids. We have an added responsibility to protect them, particularly when they need help defending themselves. This child was likely going to struggle to find a job anyway. Now on the outside chance an employer does an internet search, Mom made it even harder for him.

One of the most egregious examples is something I saw this week. It was a video of a teenage girl, and I’ll just leave it as “it was unflattering.”

Mind you, in all of these examples, I am not at all shaming these kids. No kid should be made to feel ashamed of their skill sets. Ever.

But they should get a choice as to whether or not the general public can access that information.

Anyway, this video was very unflattering. I would imagine that any teenage girl would not want this video of herself online that 5+ million people had already seen.

So, rather than ponder, I asked. “Did she give you permission to broadcast this to 5 million people?”

Her parent responded: “She seems to like all the attention. She is non verbal and mostly non communicative. She understands some questions, but she is not able to consent. I do think she’s having fun with this.”

Wow. My heart sank.

By the parents’ own words: she is not able to consent.

So they assumed consent.

That she seems to be having fun is irrelevant at this point.

When I pointed that out to the parent, they became angry and accused me of calling them a child abuser and whatnot. I didn’t.

We have an obligation

As parents to non-verbal children, we have an extra burden of proof to bear. To err on the side of caution. We can advocate for our children while allowing them to keep their privacy and dignity intact.

We do not have to show our kids at their worst moments to make our point.

Stop, think and rethink before you post that picture, video or story.

Self-advocacy and self-determination is always the ultimate goal. But if they do not have those skills yet, we cannot assume that what we think is best for them, is what they think is best for them.

But you share all the time!

You’re right. I do. As a blogger, I am very active on social media. However, as my kids get older, I ask. I do not divulge private information. I don’t even share most of the private things about myself. Certainly not my kids or my husband. I have gone back through older blog posts and deleted some things that I had second thoughts about.

Sure, my child has frequent seizures. I talk about them often. They pretty much run our life right now. Anyone who is with me in person knows that it’s not something we can hide. Nor do I try to. If Kevin could talk, would he say “Hey, please don’t talk about my seizures on Facebook?”

Maybe. It’s certainly food for thought. Sometimes when I write blog posts, it gives me the reason to pause and re-evaluate what I’m doing too.  This post is like that. I’ll be thinking about it. And not just for my disabled child. I hope you will be too.

Lisa Lightner is a Chester County, PA mom of two. This post  is from the blog A Day in Our Shoes, which she co-authors. It provides support, resources and advocacy services for parents of children with special needs.