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 knew someone with seizures and from her complaints/my observations...
ReplyDeleteIt's being repetitively told you can't live on your own, even though you've successfully lived on your own for years, that you should move back in with your mom, rhetorically asked what your family was thinking for letting you leave, by people who have no idea and don't care what your relationship with your family is like or why you chose to live on your own.
It's being verbally and emotionally abused by people who think you're less than human (just like most the points on the Autism list) because your brain doesn't work like theirs and you don't socialize quite like them and it's embarrassing if they're seen with you when you have a seizure and you remind them of the disabled kids they work with and people like you aren't supposed to be their EQUAL.
It's making "friends" who turn their backs on you the moment someone "cooler" comes along. Not just when you're 8. When you're all in your mid-twenties.
It's futilely trying to advocate for yourself in your church, which is supposedly about love and inclusion but whose members practice it as judgment and exclusion and not bothering to try to understand.
It's having supposedly sympathetic people patronize and disbelieve you when you talk about the extent of people's negative treatment of you.
She always talked about wanting a larger platform to explain the prejudice against people with seizures that she experienced. I wrote that last point because, no, I didn't understand. Not until I saw it myself, which was too late. I said I supported her in speaking out and advocating for herself, but I didn't feel like it affected me, like it should challenge my assumptions and my behaviors. In reality, smiling and speaking empty words like that is more like UNDERMINING someone's advocacy than supporting it.