Thoughts for Budding Advocates

I've been around advocacy for a while-long enough that I'm baffled that people don't know what neurodiversity is & can't believe that people don't know why r*tarded is offensive, but not so long that I really expect to be 'known'. I've been called a firecracker, a force of nature, & the irresistible force meeting an immovable object-those are my qualifications to write on the matter.

This is directed at those of you who are just finding a passion & something worth speaking out about.

Know that it isn't always easy. Know that it gets harder before it gets easier, & that's not necessarily change, but you getting used to the work.

Know that people tend to hold to their prejudices. They may not take kindly to their behavior being called out. It's up to you whether or not that's a part of the battle you wish to take on-I do, but I'm not going to think less of you if it's not something you're taking on at this time. Do what you can do, y'know?

Know that as you get involved in causes-particularly social justice sorts of causes-you'll pick up on more things as unjust. You can try to save the world, but you'll burn out. We all do what we can, right?

Don't be afraid to get angry. Effective activism and polite activism are mutually exclusive. Harness your anger for what you are trying to accomplish. It's ok to offend people sometimes--they can't be offended if they aren't listening.

If you need to take a break, do it. This isn't always an easy thing, activism. That's why it's best to do what you really mean, what you really believe in.

Other people are fighting your fight too. They're your allies. They may not be your friends, but they are on your side.

Good luck changing the world, even a little.

What epilepsy is.

Epilepsy isn't just seizures.

Epilepsy is always having to be vigilant.
Epilepsy is knowing every escape route in case of a seizure.
Epilepsy is having to carry a first aid card, an ICE sheet, and wear a medicalert.
Epilepsy is doing all that, knowing all too well that no one actually looks.
Epilepsy is hoping people don't run away the first time you have a seizure.
Epilepsy is always being told that 'there are meds for that'.
Epilepsy is always having to be aware of potential flashing lights.
Epilepsy is having to choose between leaving a place & risking the lights.
Epilepsy is teaching other people how to turn off their red eye reduction flashes.
Epilepsy is having to explain why that matters.
Epilepsy is people telling you that your safety is less important than their picture.
Epilepsy is being yelled at for advocating for yourself.
Epilepsy is being yelled at for not advocating firmly enough.
Epilepsy is being yelled at for not being able to be diplomatic about how someone is hurting you NOW.
Epilepsy is being told you don't have a real disability.
Epilepsy is often being disabled by the very people who tell you that.
Epilepsy is spending days making arrangements so an event is accessable.
Epilepsy is having those agreements be broken, ruining your weekend.
Epilepsy is being expected to thank people for almost making an agreement.
Epilepsy is being yelled at for saying “you could have done better”.
Epilepsy is being expected to be nice about them trying, even if you just had a seizure that they caused.
Epilepsy is people telling you to stay in your house if others cause dangers.
Epilepsy is people thinking you are being too cautious by avoiding people known to be ableist.
Epilepsy is not knowing how many flashes will be a problem, but that whether 2 or 20, it's coming.
Epilepsy is having to educate people unwilling to learn, and doing so while you are at your worst.
Epilepsy is not being believed about your needs until you are in a drastic situation no one was willing to be ready for.
Epilepsy is being expected to be grateful when people almost treat you as a real person.
Epilepsy is knowing they don't think you are a real person.
Epilepsy is always hearing “you are an extreme minority so you don't matter”.
Epilepsy is hearing that from another minority who should get it.
Epilepsy is being unable to win, ever, because the rules keep changing, and giving up is losing too.

I reserve the right to be pissy.

Always.

I don't have to be 'nice' in explaining my needs. It's my right to have a number of them met. It doesn't matter if I coat in in candy or dip it in acid-it's still a need. I don't HAVE to be nice to you when your vest or your helmet or your phone charm is strobing in my face. Telling me you didn't know or you didn't think you'd come across someone for whom it's a problem isn't going to impress me; you could end the sentence at "I didn't think".

No matter how I present them, my rights are my rights. My right to not have a preventable seizure or to not be run off the sidewalk (cyclists, I'm looking at you. Well, I'm not, actually, because you're neurological hazards on wheels, and if you run into me because you thought the sidewalk was yours so help me I will end you AND your bike) or to be presented important information in a manner I can process and use or to block sounds that overwhelm me in a manner of my choosing.

My rights are my rights.

I have a right to be nice. I have a right to be snarky. My only responsibility is the one I have to myself, that of getting my needs met. I don't really care if you're offended if I'm abrupt or pissy. Your feelings are not my concern. You really have no place lecturing me on how I present my needs, especially in a situation where the only option is to do something about it now. Being nice doesn't work. Letting my snark flag fly does. Talking to you as though you're choosing to be an asshat works a lot better than assuming you are unaware. Talking to you as though you're choosing to be an asshat gets your attention. Being nice doesn't. It just makes you feel fuzzy.

It is my right to assume you're an asshat. It is my right to be pissy when you are making my brain hurt. If you decide that it's your place to Argument From Tone me about my needs, my assumption that you are an asshat is correct.

They are my rights. Nowhere among anyone's rights are included the right to not be made uncomfortable or the right to not be offended.

Those aren't your rights.

Being pissy about mine is mine, though.