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Pressure is hard to notice unless you are under pressure. A system can put some bodies under pressure without that pressure being experienced, let alone witnessed by others who are not under that pressure.
-Sara Ahmed 28
And you get to a point where you get so tired of trying to explain to someone that you just don't go into detail, you just don't bring up the subject, you just don't make an issue out of it and it's not that you're trying to hide, it's just that you don't want to get into that debate where people are wondering, "Well, are you . . . ?" "it can't be that bad," or the comment, "Gee, I didn't know it was that bad." They change their whole viewpoint and you're able to see how that's changed when you've told people, when you've fully disclosed versus the ones that you don't say anything to.
-Ethan,1 study participant
Why is it so hard to communicate about disability? This is a question that has been sitting in the pit of my gut since I was diagnosed with a blinding disease at age fourteen. This question stayed with me through a graduate course in disability studies and a doctoral dissertation focused on the rhetorical experiences of people who are blind and visually impaired. The gulf that lies between disabled and non-disabled people is so wide and deep I'm not sure I'll ever answer this question, but every time I read Ethan's account above, I am reminded of one reason why it is hard to communicate about disability-every time people with disabilities disclose or show up in public space, they have to
confront how we all think and feel about disability, and it is usually not positive. Like Ethan explains, people are confused, sad, surprised, and mostly, they don't know how to react-and disabled people have to deal with the consequences. Not only is it difficult to explain, especially when one does not appear disabled (as Ethan says, people wonder what your status is and say, "Well are you . . . ?"), but it is also taxing to watch people walk through their discomfort about disability and, as Ethan points out, change their opinions of a person's capacities. As...