Disability

Every new app comes with a tax I pay before I can use it. A sighted person finds out in seconds whether a tool works. I spend an hour checking labels, headings, and keyboard access. And the money I lose on things I can’t use is money I don’t get back.

My mom has been my caregiver for thirty-four years. People call caregivers heroes, but she would never call herself that. She did it because she was my mom and she loved me.

When you live on irregular income, every subscription has to earn its place. Before I buy something new, I check what I already pay for. Most of the time, the thing I need is already in there.

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 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.