It Could Be Worse…

Blog hopping today over at With a Little Moxie. This week’s prompt is to talk about a phrase that really gets under your skin. Be sure to check out the other entries in the hop – this is not limited to just bloggers who have a Down syndrome connection, it’s open to any disability-related bloggers. (A list of participating bloggers can be found at the bottom of this entry.) I hesitated to post this at all because I think people aren’t going to like it very much, but as someone pointed out, it’s my truth, and I want to share it.

I simply cannot stand the phrase “it could be worse.” It’s like nails on a chalkboard to me.

This is a phrase that I hear a lot in the Down syndrome community. “Well, at first I was sad my kid has Down syndrome but then I realized it could be worse.”

This does nothing to stop a grieving process. For me, it actually made my grieving process worse. I was being told I shouldn’t even be grieving because “it could be worse,” so I was just adding heaping piles of guilt to my grieving. There is nothing wrong with grieving over a Down syndrome diagnosis. Nothing at all. I think my (lengthy) grief process is what put me in such a good place today.

It also strips people of their personal experience. How do we know that a parent isn’t at “the worst”? We don’t know what it took to get that parent to the point where they are upset enough to talk to us about it. Perhaps when someone reaches out in a time of grief, sadness, despair they are already at their worst, even if it doesn’t seem catastrophic. It’s not our job to make that judgment call; it’s our job to listen.

I often wonder about  the family who has it “worse.” How it might feel to look at your child and know, deep in your momma heart, that people are using your child and your family to make themselves feel better. How it might feel to suffer the loss of a child and know – on top of all that pain and sorrow – that people are thinking of you when they tell someone “it could be worse.”

And then I realized that there are people out there using my child as their “worse” scenario. “Wow, I thought it was scary my son was in that accident…but it could be worse. He could have a cognitive disability!” or “They found a heart defect on the ultrasound that scared me, but it could be worse – my kid could have had Down syndrome, too!”

Feels awful, right?

This kind of thinking – in my opinion – can be damaging. It also sets up a disability hierarchy that is completely pointless and perpetuates society’s negative perception of disability.  (this article explains that concept so much better than I can)

What would I like to hear instead? Simply this: “I hear your pain and sadness. I am here to listen and support you.”

I know I’m shooting the moon here in asking people to consider their use of this phrase. Thanks for listening to me vent, and I hope this provides some food for thought.