It's Okay To Celebrate An Evolving Disability

If people with disabilities evolve their skills to the point where they don’t need the assistive equipment they used to require for the same task, it is ablest to celebrate?

Oh man, a question without a be-all, end-all answer. But this is a question a lot of able-bodied caregivers face.

Here’s an example of why this question seems so difficult to answer. Maybe you’ve seen this type of thing yourself. A year or two ago, a parent shared a video to social media of her daughter climbing a set of stairs. The daughter had cerebral palsy and was climbing her stairs for the first time without assistance. The mother was proud and wanted to share her daughter’s accomplishment. What followed, after multiple degrees of sharing, was the branding of the video as inspiration porn and a caricature of disabled life as simply being the desire to function just like everyone else in the abled world.

The video that went viral.

Now of course, those accusations were lobbed against media outlets and websites who just saw an opportunity to show something “inspirational.” The old trope being something like, “If that little girl can overcome her challenges and walk up stairs, surely I can overcome mine to finally open a jewelry shop on Etsy.” And as such, that is the only way this girl and others with disabilities are relevant to my life.

But I, as a parent, am not the mass media.

Parents show pride and blast social media with news of many, many childhood accomplishments. Crawling gets a post. Eating gets a post. First brunch gets a few posts. And graduating to the potty gets a photo announcement to rival an engagement. Pride in your child reaching a new skill set is universal.

Looking good.

When our kids do good, we share–especially when that accomplishment is also personally rewarding for the child as well. And that’s okay. That’s normal. And showing pride about a child’s evolving disability is normal as well.

My son’s old bath chair, waiting for the garbage truck.

All of which brings me to the latest accomplishment we celebrated in our home–the throwing away of the old, grimy, moldy big boy bath chair.

I don’t even remember how long we had the chair. I think since my son was six to nine months old and it was clear he needed physical therapy to learn how to sit up on his own. The chair was something I ordered online when he couldn’t fit into the infant bath thing anymore.

The bath chair worked fine as far as keeping my son in place, but it mostly held him above the water. That made it functional but not necessarily pleasant for getting a bath. It’s hard to relax when you’re exposed to the air between rinsings.

Hello, Mr. Whale.

My son started getting up into a seated position by himself about a year ago, and it wasn’t until all that time since then had passed that we finally felt he was ready to be in the bath without a chair. We still started out with him wearing a protective float collar.

As a parent, I’m proud of this change for a few reasons. The most selfish reason is that we get got to eject a piece of equipment from our home. Again, that’s par for the parent course. Chucking out the high chair was equally as satisfying.

But the biggest reason we are all proud of this change is seeing how much fun my son gets from taking his baths now. The task went from something to simply be tolerated to the highlight of his day. He laughs and splashes and turns around non-stop. I have to hide behind the tub door to not get drenched by errant water.

Celebrating my son’s new skill of independently sitting in the bath is not the same as rejecting people who can’t. That seems pretty obvious and inarguable, but things become less clear when we get to skills like walking or talking. Pride in an accomplishment could easily mix with subconscious resentment bubbling to the surface. Comments like, “Thank God we don’t have to get [blank] equipment now” probably won’t win too many friends among parents who do need it. That’s just one example of many potential landmines I think a lot of us are worried about stepping on as able-bodied parents. They are worthy of being mindful of, but being proud of a child’s new skills is not one of them.

So I’m proud that my son can dunk his head under the running bath faucet and soak his dad with his little boy foot flippers. And I doubt anyone could find something wrong with that.