Tuesday, July 23, 2019

"just bring a straw with you"

Disabled people are told all the time to just carry straws with them if they need them. To make it a burden on them. That other people can't think about accommodating. Often this includes forcing reusable straws which there is so much written about I'm not going to spend any spoons searching for and linking to anything about it. (No reusable straws aren't a feasible option for everyone. They are for some people. Okay, sure, if it is for you, then feel free to use a reusable straw. They aren't for everyone. Don't tell people to use a reusable straw because you can use one. Not everyone can.) Even when it doesn't it goes into, you can just buy one time use straws and carry them with you instead of expecting others to cater to your needs.

I mean, yes I do expect "catering to my needs" when that is basic accommodations. I'm not asking for special treatment. I am asking to be able to drink liquid and eat food.

But anyways, why I am writing this now. Today I had a scare of losing my cefaly. This is a multi-hundred dollar piece of equipment that is one of the major parts of attempting to keep me my migraines more controlled. I need to carry it with me everywhere. This is something I actually need to carry with me, unlike straws, because I need this piece of medical equipment with me everywhere I am, and its not something that is other locations can provide for me (for one thing I need it when traveling place to place, for another, I am not expecting places to have an eTNS for migraines, am expecting them to have straws). And because attempting to manage and carry so many different things that I need to carry everywhere, I lost it. If I lose this, if I don't have it, my migraines spiral out of control (not that they are in control ever, but out of what I have towards control). Because I can't take triptans or DHE, my cefaly is the only thing I can use when my migraines are severe enough I need to use something in the moment, immediately, now. Not having that is a big deal. If I'm not using it regularly, the number of falls I have dramatically increases. If I am not using it regularly, my auras get even more severe (and I am talking as someone who has gone 10 years without breaks completely leaving aura, jumping migraine to migraine with complex extended length auras.) It is a big deal for me to not have access to my cefaly always.

And I lost it. I have managed to find it before writing this, but the point still stands that I lost it, because I am required to carry so many things in order to try to exist in public. That I need to carry a backpack full of items in order to simply make up for the fact that places won't even try to accommodate me, not to mention try to be accessible, and still end up having it cost such an unreasonable amount to do anything.

And people keep telling me to add yet another thing. Yet another thing to a bag where I have lost necessary things from, because they need me to carry literally so much weight it has me in constant pain to carry. Yet another thing to a bag that I am losing things I need. Yet another thing to a bag, where my cefaly isn't even the only thing I have recently lost, and other items haven't all been found, other things just are easier to replace if it comes to that. Yet another thing that is more work, more executive functioning, and more something will fail, and who knows what.

It's not just straws. It's everything. It's needing to do everything. It's needing to fight to exist. It's not having things be accessible. It's not having anyone accommodate. It's the fight against accommodations being so strong that people won't possibly think that someone who needs a straw can have one, because of being too much of a burden, and not caring what it does to us. If it hurts us, that doesn't matter. If it is the straw that breaks us, that doesn't matter. We aren't human anyways.

You aren't asking me to carry a straw. You are asking me to carry more than I can, I'm already trying to find ways to carry too much.

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