I’ve spent much of the last month preparing my appeal for PCA services. It has forced me into this kind of emotional introspection, which I wouldn’t wish on anyone. To appeal, I had to revisit some of the most vulnerable times in my life—things I’ve fought hard to get through, things I don’t bring up lightly, experiences that continue to impact me in ways I can’t always clearly articulate.
And here I am, trying to condense everything so that it fits on paperwork, translating real life into the kind of bureaucratic language which others will label as “valid” or “not valid.” It’s frustrating to know that these descriptions, these clinical, cold phrases, determine if I get the support I need to live safely and independently.
Just as I finished finalizing my PCA appeal, a letter informing me of an upcoming SSI redetermination hearing arrived in the mail. It’s yet another sign of the cyclical nature of this fight. It seems like the moment you prove yourself, another letter comes forcing you to go through the same process again.
The forms and paperwork continue piling up. More descriptions of your life and disability need to be submitted to people who will eventually determine if your disability is deemed severe enough to continue receiving the benefits you’ve been receiving for a decade
There’s something deeply dehumanizing about needing paperwork to justify who you are. I’m not looking for pity; I’m looking for understanding. I want people to get that yes, disability can be frustrating, but that doesn’t automatically make my life some kind of tragedy. What feels truly tragic is living in a society that makes disabled people fight every day for the supports and services that let us live with dignity. My disability isn’t the problem. The problem is the system that keeps demanding I prove my worth, again and again.
What hits me hardest is the way familiar all of this is. Disabled people are always being asked to prove themselves: prove the pain, prove the limits, prove the need, prove that what we already know is real.
It’s a cycle that exhausts you long before you really live life. Instead of putting time into hobbies, jobs, or being part of the community, 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.
And that fight has a real cost. It isn’t only the hours spent tracking down records or writing statements. It’s the emotional weight of ripping open old wounds, the fear that you won’t be believed, the humiliation of having to explain your hardest days to strangers, the pressure to make your life sound “bad enough” to qualify for help. It’s how the process slowly chips away at your dignity, even when you’re trying to protect it. It’s also how you start doubting yourself—not because your needs aren’t real, but because the system is built to make you second-guess them.
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 wasn’t something you had to earn by proving your humanity. How much more energy would we devote to our goals, relationships, and well-being?
When the world forces you to justify your existence, it makes you feel less human. When you get the help you need you can really live your life. Disabled people have so much to offer the world, but it’s hard for them to reach their potential if they can’t get the help they need.
This appeal has reminded me why accessibility matters so much. It’s not only about services, equipment, or paperwork. It’s about living without constantly defending your existence. It’s about envisioning a world where support is expected, not a fight—and knowing how much more space that would leave for joy, creativity, and community.