To My Loved Ones Tagging Me in Stories About People With Disabilities

A few months ago, a story did the rounds about a boy with cerebral palsy completing a triathlon. What a wonderful achievement for that boy to complete such an intensely physical feat seemingly against the odds.  But with the sharing of that video came the onslaught of beautiful, well-meaning friends. Tagging me in that photo. Posting the video on my Facebook wall. Sending it to me in a private message.   

There was probably a time when seeing such a video may have given me hope, that the possibilities for my own child with cerebral palsy were infinite. But now, a few years down the track, we’re comfortable with our child’s diagnosis, and we know he will be able to reach his full potential, whatever that may be.

Who gets to decide what their full potential is, though?   

Picture this. You’ve just bought your 5-year-old a new bike. Suddenly 10 friends tag you in videos of a 5-year-old doing amazing BMX stunts. If that 5-year-old can do it, then yours can too, right? After all, they’re both 5-year-olds with bikes.

What if you posted a video of your toddler pointing out pictures in a book, and then a bunch of friends sent you videos of children doing baby reading programs and reading actual words at 18 months old? Your baby could do that, too!   

Or what about a video of a child with red hair who’s an amazing singer. Your child has red hair too, so they could be just like this kid!

How would you feel? What if your 5-year-old has no interest in BMX and just wants to ride carefully along the footpath outside your house? What if your toddler is more interested in banging on pots and pans, and that’s completely OK with you? What if your redhead hates music?

Imagine if friends started tagging you in posts like “30-year-old mother runs marathon.” Well, you’re a 30-year-old mother, aren’t you? You could totally go and run a marathon if she did! Or what if you’re Asian, and all your friends tagged you in a post every time an Asian person was mentioned? Because all Asian people are the same, right? No, they aren’t. And neither are people with disabilities.

All children are individuals. Not every 5-year-old will want to do BMX, and not every red-haired child will like singing. This includes children with cerebral palsy. They may have something in common with others by sharing a diagnosis, but they are still individuals with unique interests, and unique strengths and weaknesses like any other child. I know you’re trying to be encouraging when you share those stories with me. But before the boy who did the triathlon, there was the boy who ran a race at school, and his entire class went and ran beside him. Or you saw a child on a current affairs program with cerebral palsy. These children are not my child, and may in fact have little in common with my child.

There is a huge range when it comes to how cerebral palsy can affect a person. Just because one child with cerebral palsy can do something, it doesn’t automatically mean another child can. Nor does it mean they will have any interest in doing so, because just like not all able-bodied people are interested in doing triathlons, neither are all people with cerebral palsy.

It just doesn’t really make sense. And it doesn’t just happen to parents of children with cerebral palsy. I believe other parents of children with disabilities experience this, too. We parents may choose to share videos or photos of children who share our child’s diagnosis from time to time to help raise awareness or because they have touched us in some way. But we don’t always need all our friends sharing them back. We are aware of our child’s condition, and we love our child very much, and we will encourage them to reach for the stars (or whatever else they want to reach for!) because we believe in them.

We know you mean well, but I promise you — if something amazing has happened in the world of cerebral palsy, I’ll know about it before you will. So for now, please look past my child’s diagnosis. See who he really is and what he’s interested in. Don’t lump him in a box with others just because he shares a similar characteristic. And I won’t do it to you or your children either.

The Mighty is asking the following: What’s one thing you wish you could tell your loved ones about your experience with disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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