Chronic-Illness

Christian ministries for the chronically ill keep building events and platforms that exclude the very people they exist to serve. Live-only conferences, video-based content, paywalled recordings, and inaccessible websites aren’t just oversights. They’re choices.

Fatigue from chronic illness doesn’t respond to rest. I picture it as a wave coming toward me. Caffeine, music, a splash of water on my face are my surfboard. Sometimes they hold. Sometimes the wave flings me off anyway.

The ultimate goal is an organization for multiply disabled people. But most of us were taught we can’t contribute before we ever got the chance to try. The school rebuilds what the systems took.

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.

The existing word prediction tools don’t work with NVDA. So I built my own add-on that predicts words using n-gram analysis, announces them through NVDA’s speech engine, and works inside the screen reader instead of against it.

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.