Advocacy

I’m safe, fed, and have my physical needs met, but it wears on me. The sameness, and increasingly, the small indignities.

Accessibility is built one disability at a time, and multiply disabled people fall through the gap between features.

The disability rights movement says people with disabilities should live in the community, not in institutions. Texas funds five hours of care a day. I need 24. I’m sitting in the gap.

I wrote an accessibility review of NukeFire and flagged three things that were missing. The developer built all three and credited me by name. That doesn’t happen often.

I have $22 to my name. The tools I use to write, work, and stay connected cost $100 a month. This is what that gap looks like.

My evaluation recommended home and community based services in 2011. Nobody told me. I found out fifteen years later, when a woman sat in my room and said the sentence that had been written down all along.

I bought a chew tool because I kept catching myself chewing my fingers. It turned out the need went deeper than a habit. The nursing home took away most of my sensory input, and my body found another way to get it.

The independence movement was a necessary fight against institutionalization, but it equated freedom with doing things alone. It never made room for people who need support, and it turned needing help into a failure state.

When you can’t write the code and you can’t find the tool you need, AI is the only way the thing could exist at all.

The wave metaphor for fatigue was true but incomplete. The wave is the crash. Underneath it there is a tide that never leaves, and an undertow that grabs without warning. This is the fuller picture.