Advocacy

A reflection on seven months of loss, change, and becoming. How my plans fell away so something else could take shape, and how I found peace with who I’m becoming, even while some questions remain unanswered.

A lifetime of being talked down to, left out, and left behind by people who assumed I couldn’t rather than asking what I needed. This is what infantilization looks like from the inside, and what it costs the people it happens to.

The care system measures whether you can walk, eat, and speak. It doesn’t measure the kitchen you can’t use, the routine you can’t control, or the relief of finally stopping the impossible job of being your own full-time caregiver while disabled.

My family built a vocabulary for what it’s actually like to live in my body. Systems have their own vocabulary, and none of it has room for mucus-y days, whooshy nights, or the dog who saw the version of me that was actually there.

Multiple disabilities don’t add up to twice the difficulty. They compound. And the hidden cost of producing “acceptable” output from a system with no reserve capacity is one that no assessment, no checklist, and no institution has ever known how to count.

Eleven years ago, a tiny stray puppy walked into the room where I was curled up in pain and decided I was his person. Now I’m in a nursing home and he’s with my mom, and the distance between us is the shape of everything disability has cost me.

A personal reflection on why emotional expression can be physically expensive when you are chronically ill, and why quiet does not mean okay.

I’m grieving the realization that the independent future people imagined for me wasn’t based on my actual support needs. It was based on what they could see, what they wanted to believe, and what systems are willing to recognize.

I entered nursing home care because I needed to get out of an unsafe situation quickly. But the crisis also forced me to face a bigger truth: I may need full-time long-term care, even if a nursing home isn’t the right setting forever.

Being seen as highly verbal and good at writing made people assume language was easy for me. It wasn’t. This piece is about the hidden labor behind producing words, the harm that assumption caused, and why AI can be language access rather than thought replacement.