Sunday, September 27, 2015

Accessible doesn't include me

I don't have a choice of always watching, always being on alert. I don't have the choice of always making myself aware of everything going on around me, no matter how many spoons it is costing.

I don't have a choice, except to be on high alert, or to find one of few close people who will watch out for me, warn me, and take on the burden, exhausting themselves in order to make an experience easier for me. Only in those situations, can I let my guard down, letting myself down to low alert, and even then, I must pay attention always.

I don't have a choice, for things happen fast, and I need to react. If I don't, I am the one paying for what others are doing. I am the one spending days in pain, losing the ability to do things as simple as eat or sleep, see or balance enough to take a step forward. I am the one thrown into pain as my brain breaks into migraine day after day, because of what happens around me. I am the one who has to try to keep myself safe, because I cannot trust that I will be safe in the migraine, cannot trust others will help, and cannot trust that others will do a thing to prevent the migraine from setting in.

It doesn't matter how accessible a place is. Accessibility doesn't mean me. It doesn't mean someone for whom the smell of perfume will near instantly change whether or not they can be in a space. It doesn't mean someone for whom someone sitting next to them after smoking, is a way to question chance only about how bad the migraine gets based on how fast they escape, not even a question of whether it occurs.

It doesn't mean someone for whom the lighting, the sounds, every one of those things, are more ways to chance what is going to happen. More ways that already affect what is going on, how well they can speak, or recognize faces, or navigate space.

Accessibility doesn't mean including someone for whom you need to control the environment. We have to take care of ourselves. We have to watch out and protect ourselves.

I'm lucky this isn't life or death for me. Other people are not, and can literally die because of the accessibility challenges that I see every time I go anywhere. (I'm so glad I don't have seizures.) In either case, accessibility should not be limited to ramps and CART. Accessibility should include me even though it isn't life or death. It should include people for whom it IS life or death for. But in both cases, if the environment matters, it doesn't.

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