Advocacy

I’ve been sitting with a vision for months. A learning program designed for multiply disabled people from the ground up. Not accommodations bolted onto a broken system, but something built for us as the default case. This isn’t a launch. It’s a ramp.

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 school for the blind sorted kids into teams by cognitive ability. Team 5 was college-track. Team 6 was group home track. I was Team 5. When I asked for Team 6, they said no.

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.

A desktop computer isn’t a device for me. It’s communication, regulation, learning, advocacy, and independence. The nursing home almost didn’t let me bring it because it didn’t fit their idea of what a patient needs.

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.