Yesterday, I wrote a blog post about how being disabled can feel like a full-time job. I spent hours doing things directly related to my cerebral palsy. It’s a cycle that exhausts you long before you really live life.
Instead of spending time on hobbies, jobs, or relationships, much of it goes into documentation, appointments, appeals, and explaining yourself, over and over. It’s a painful reminder that the world wasn’t designed with us in mind, and that access often becomes something you have to fight for instead of something you’re guaranteed.
I keep thinking about how different things could look if disabled people didn’t have to fight for every basic need. How much energy we would have if support weren’t something you had to earn by proving your humanity. How much more energy would we devote to our goals, relationships, and well-being?
Sometimes I find myself wondering who I might become if all that time and energy were mine again. What could I create? What would I be able to do?
Disabled people deserve far more than survival. We deserve to be part of society without having to always fight for our basic rights. We deserve support that acknowledges our humanity without demanding endless proof.
The most troubling part of our reality is that none of this is unavoidable. These obstacles result from deliberate choices ingrained in policies, organizations, and societal attitudes. If these choices were made, they can be changed.
Until that change happens, living with a disability often feels like a full-time job. Not always due to our bodies or minds, but because of the constant effort required to exist in a world that still treats basic humanity as a privilege.