Disability

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 privacy community pushes self-hosting, de-Googling, and more private alternatives as universal goods. But for disabled users with multiple conditions, those solutions often cost more, work less, and break when we need them most. Privacy shouldn’t require giving up the tools that keep us functioning.

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.

I went from a fragmented Franken-System of incompatible tools to a cognitive prosthetic I couldn’t afford to one AI that knows me, doesn’t break my budget, and meets me where my brain actually is. This is the story of building a digital nervous system because the physical world’s infrastructure doesn’t work for mine.

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.

How I separated college Bible coursework from daily time with God, simplified my routine for low-energy days, and learned that prayer doesn’t have to be spoken out loud.