close-up of a woman's hands typing on a smartphone

Today I’m going to reflect on something that has been weighing heavily on my mind lately – parents oversharing on social media the intimate details about their disabled children’s lives.

When I started this website, I established a few rules to help me decide what, and how, to share my parenting story. This is why I don’t share the name of his specific genetic syndrome, photos of his face, or specific details of his diagnoses online.

JB can’t tell me if he’s okay with me sharing things on my feed. Even if he did speak, though, I don’t think any 7-year-old (or 37-year-old, for that matter!) really understands the long-term implications of social media. When in doubt, I will always err on the side of protecting my son’s privacy.

I understand that not everyone will agree with where I draw the line. What I don’t understand, though, is why many parents and caregivers are willing to share the most vulnerable, potentially embarrassing aspects of their children’s lives online.

Here’s a brief list of subjects I’ve seen people post about their children in graphic detail (often with photos or videos) on social media: Toilet training, diapering, bathing, puberty, reproductive health, painful medical procedures, mental health crises, and sensory meltdowns.

Imagine how horrified you’d be if someone shared the specifics of your bathroom and hygiene habits online. What if that information was the first thing that came up when someone Googled your name?

The main arguments I’ve heard for why people share this information are to raise awareness and enact meaningful social change.

We all want our loved ones to feel a sense of belonging, respect, and having their needs met. You can be an advocate and raise awareness without sharing details of your children’s traumatic moments online, however. You can’t advocate for your children while at the same time exploiting them. You just can’t.

So what can you do to help, whether you are a parent or a friend looking to support the caregivers in your life?

First, don’t post anything you wouldn’t want someone else to share about you. If you see a post and feel it may be exploitative, simply don’t like, comment on, or share it. You can also hide, mute, unfriend or unfollow the person posting the content. If you feel comfortable talking with the person who posted the content (for instance, if they are a close friend), do so from a posture of understanding rather than accusation.

Finally, the fantastically named website Bitching and Bolusing frequently discusses the topic of advocacy vs. oversharing. I highly recommend reviewing their talking points or listening to their podcast episodes for a more in-depth understanding of why oversharing is so dangerous.

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