09/12/2025
Being disabled is basically like having a full time job you never applied for. There is endless paperwork, appointments, and evaluations while trying to survive the actual daily struggles of being disabled. And right now I am in the middle of something way too many of us know all about, getting reassessed for my in home care.
On paper it sounds easy. Someone comes over, asks questions, checks boxes, and decides how much help I get. In reality it is awkward, exhausting, and kind of soul crushing. You have to list every single thing you cannot do by yourself. Then you have to say again that no, my disability did not suddenly vanish since the last time they checked. That is not how this works.
For me, in home care is not some fancy perk. It is how I get out of bed, eat, keep my place clean, and live with dignity. Without it, my independence is gone. But every year or two, I have to prove all over again that I still need it.
I get that they want to make sure resources go where they are needed. But what they do not get is how humiliating it feels to perform your disability for a stranger. There is always this quiet panic in the back of my head, what if they do not believe me? What if they cut my hours and I am left struggling?
I know I am not alone. Disabled people everywhere deal with this same exhausting process. Our freedom and quality of life are basically hanging on somebody else’s checklist. We deserve a system that understands some disabilities do not magically get better, makes reapprovals quick and easy, and actually trusts us.
Until that happens, I am going to keep speaking up. For me, and for all of us. Because we are more than numbers on some form.
