an update to my insulin pump (a model which is highly recommended by doctors because it has software you can update, unlike other models) would allow my doctor to see more of my medical data because of the way my pump would now function.
i technically had the choice not to update it, but if i didn’t, my insurance company would not cover the cost of fixing or replacing it if something happened to it. they could say that the damage came from not updating the system, even if the damage was completely external.
some of the software updates have been beneficial, and have made my life easier. however, the choice to use these new system has always been made for me. i can’t afford to replace this $3000 device that allows me to live without injecting insulin upwards of five times a day.
disabled people already live in a world that is hypermanaged by people who have absolute control over our health and safety. anyone with a prosthetic, hearing aid, or pacemaker can face the same problem i did if the manufacturer decides they need to exert their presence in our lives more than they already do. the “cyberpunk dystopia” is already here, and if you want to change the ever-growing vice grip of “smart technology,” help disabled activists. we’ve been here all along.
(if you want a short primer on what it’s like to be disabled and rely on technology, read Jillian Weise’s personal essay in Alice Wong’s Disability Visibility).
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