I’m Not Lazy—But Thanks for Assuming
On Disability, Fatigue, and the Unseen Cost of Ambition in an Inaccessible World
At the tail end of May, I finished my second semester of college and said ‘hello’ to summer vacation. My free time has been devoted to my creative projects and…sleeping. Not because I want to spend 5 hours a day napping. No, my body kept it all together during the school semester and kindly waited until I finished my last final to fall to pieces.
I predicted this would happen. Actually, I predicted I would be even more chained to my bed and the realm of sleep by my lupus fatigue, so I’m not as frustrated and disappointed as I could be. It’s still discouraging to be completely at the mercy of my corporeal form, though. I want to create; I need to create. I have hypergraphia—writing is as essential to me as breathing—but my energy levels tank before I can finish a paragraph. The thoughts and desire to create are there, but my internal battery can’t hold a charge long enough to finish anything, let alone get into the kind of flow state I like to be in when writing.
There is no getting around this if I want to recover. I was on the edge of burn-out, so I’ll have a lot of work…er, rest…ahead of me. If I don’t rest enough, I’ll never reach my creative zenith before it’s time to begin the Fall semester. And not getting to fully express my creativity this summer would be a nightmare made real. And so I must manage my energy outputs and rest inputs until I can return to equilibrium.
Energy Management Is More Than Rest
There’s this idea many hold that energy management is about choosing when to rest. For those of us with disabilities, it’s much more than that. We aren’t just rationing energy—we’re rationing our experiences. We’re choosing, every day, what parts of our life to nourish and what to leave behind. Disappointment is inescapable, because the desire and ambition to do more never fades. Sometimes, the disappointment is a soft gnawing, but other times, it is a yawning chasm threatening to swallow everything.
We talk about this a lot in the disability community, and since none of us have any good, lasting solutions, the most we can offer is emotional support. It’s deeply unsatisfying. You work around limitations as best you can, and try to remind yourself that it’s not a reflection on your ambition, intelligence, or drive.
The hardest part—more so than the disappointment itself—is the judgement. Just recently, my boyfriend’s boss offered a casual, well-meaning suggestion: maybe if I contributed more around the house, some of our persistent problems would disappear. But I can’t do more. Not because I’m unwilling. Because I’m disabled. Even though I’m one of the hardest-working, most ambitious people I know, I live within limits I did not choose for myself. Without them, I’d be unstoppable.
I don’t want pity or sympathy. I don’t need advice. What I need is accommodations and understanding. Disabled people carry a lot on their shoulders. We’re neither lazy nor underachieving. We’re surviving in a world that asks too much and gives too little while also refusing to meet us halfway.
Making the world accessible doesn’t take that much. Not really. A little ingenuity, respect, and a willingness to deeply listen to disabled people are the main ingredients necessary to build a world less confining for everyone.
It wouldn’t cost much, but it would change everything.
What would our world look like if we stopped treating disabled lives as problems to solve—and started treating them as lives worth building for?