Please Respect Privacy When Posting About Kids With Disabilities Online

When I was in kindergarten, I remember being in a session with the school physical therapist and her asking if I wanted to tell my classmates about my mild cerebral palsy. I said no. I didn’t want anyone to know my secret, one filled with so much misplaced shame that even when I was in therapy at age 24, whenever my therapist would bring it up, I would shut down, unable to move or speak for the rest of the session. Thankfully, three years later, we’ve mostly worked through that.

I grew up in the 1990s, long before social media existed. I was protected from having any sort of my childhood, especially my secret about my disability, put out into the world for everyone to see without my direct consent. With my story posted on social media, I would have had no voice, no choice. My private secret would be out there for the world to see forever. What if later on my classmates saw my secret without my knowledge and used it against me? What if they began to bully me when I’m often able to “pass?” I would have been devastated.

I understand the desire to use social media to reach out to get support on being a parent, especially one to a child with a disability. But, we need to protect our children. If my sensitive information from childhood were out there, as an adult, I would feel silenced, powerless, voiceless.

So, how can we use social media to reach out for support while protecting our children? Use private, secure chat spaces. Use vague terms like “R” instead of “Rebecca,” especially when posting on a forum. Post non-identifying pictures that protect the identity of the child.

Parents, please allow your child the right to have their voice heard about how their disability (or childhood in general) is discussed on social media. Wait until your child is older and gives consent before going public with more detailed information. Wait until they fully understand the impact of social media and how that may impact their future.

As a child, I had a voice on what I wanted people to know about my cerebral palsy. Was that ultimately the best choice? Probably not, but I had a voice and nothing was posted for eternity on the internet for the world to see without my consent. The better option may have been for someone to encourage me to be more vocal about my disability when talking to people in person, but never on the internet.

I had a voice. Let your child have one too. Making the choice to share their personal information on the internet for them is disrespectful and takes away their autonomy.

Just like in the 1990s, children have the right to choose with whom and how their disability is discussed. Please protect your child. It is their right to use their voice. Don’t take that away from them.