reading a paper on quality of life among 45-to-70-year-olds with Down syndrome:

“Individuals expressed a desire to be allowed to go to bed when they wanted to.”



I lived in a room and board that failed the burrito test. (”If you’re not allowed to get up in the middle of the night to microwave a burrito, you live in an institution.”) No one stopped me from going to bed, but they did tell me I had to have my lights out by 10, and that I had to be out of the house by 10 the next morning. When I complained to my outpatient program that I needed more help than I was getting, they threatened me with board and care, where my cell phone would be taken away and I would lose contact with the outside world. My case manager sounded so damn smug, like he had caught me out, when he said, “if you’re really as helpless as you say, then you need to be in a board and care.” Like my only options were struggling to do things I couldn’t do, or surrendering my life to an institution.

When I tried to talk about these things with other people, they always rationalized it away. (I told my dad once that my caseworker was reading my e-mails as I wrote them, demonstrating extreme disrespect for my privacy, and he said, “Well, she’s probably making sure you don’t use the internet to goof off.” I was 22 years old.)

 People tend to mock the idea that telling an adult when to go to bed, when to eat, etc., is a human rights violation, even though they would find it outrageous and absurd if anyone came into their lives to do the same thing to them.

And this is what people seem to think when they tell disabled activists we’re just not disabled enough to understand that some people really do need to be locked up and deprived of all autonomy.