Disability Pride and Joy in the Shadow of the Big Ugly Bill

On what Congress defines as "beautiful" vs. what actually is.

As news broke about the passage of the Big Ugly Bill, I was getting ready to load up the car for a drive with my family. We took a short summer adventure to an idyllic spot with country roads and rolling hills. It was the kind of place that makes you wonder how such serenity can coexist with the rest of reality.

It felt almost forbidden to appreciate the view—so unassumingly beautiful—as though the only appropriate thing was to stay inside, steeped in despair.

I stared out the window, turning over in my mind how the people in power have contorted the meaning of the word "beautiful" to name a bill so earth-shatteringly hideous.

My chest tightened, so I tried to calm myself by envisioning my surroundings as a postcard with a glossy photo and a platitude written in fancy script, as if in an alternate universe where everything seemed okay. Perhaps some cliché about how the sun can shine even among the darkest clouds.

Image description: A photo taken through the car window of a nearly cloudless blue sky over gently sloping hills, lush green grass, and a sprawling leafy tree with a wooden picket fence in front of it. At the bottom of the car window is a bumper sticker with the accessible icon on it that says “please don’t park within 8 feet.”

Wouldn't it be lovely if we didn’t have to peddle this kind of manufactured happiness through oversimplified, mass-marketed motivational bullshit?

Instead, we have to figure out how to find joy amidst chaotic, messy, conflicting truths. There is no peaceful oasis in a pretty little town that erases living in a country where the administration deems protecting humanity detrimental to its bottom line. They fail to realize that all the money and power in the world will be meaningless if we wipe ourselves off the face of the earth through loss of healthcare, lack of access to food, climate change…do I need to name every pending disaster?

With this Big Ugly Bill putting so many lives on the line, it’s not a dramatization to say it’s pushing humanity ever closer to the end of our collective story.

So, why not embrace beauty and joy where and when we can find it? I know that being able to do that is in and of itself a privilege. But as Disability Pride Month is underway while basic human rights continue to be dismantled, joy isn’t frivolous. As so many disability activists remind us, joy is central to disability culture. Joy can be how we bring our community together. Joy is essential for survival. And right now, disabled people shouldn’t have to answer to anyone for trying to hold on to what’s good.

The writer in me wants to tie up these thoughts neatly with a short and sweet message—the kind I’d write to you on the picture-perfect postcard I so deeply wish we all lived in. This isn’t truly possible when so much is broken, but I’d still like to try.

When the weight feels like too much, I hope someone is beside you to help carry the load. And as we figure out how to move forward together, I hope the sun lights our way.

If what you read resonated, I hope you’ll subscribe. And don’t forget to click the ❤️ at the end and leave a comment. It feeds the Substack algorithm and helps more people discover Words I Wheel By. Plus, I’d love to know what’s on your mind, so let’s keep the conversation rolling!

If you’ve learned from my work and have the capacity to support, I hope you’ll consider a paid subscription. This will unlock access to my list of what I recommend watching for authentic disability representation, which I keep updated. for you, not to worry. Either way, I’m truly so glad you’re here!