We Aren't Here to be Your "Resource"

And it's fucking insulting when people say we are.

Autistic adults are not here to explain to NT parents what autism is like. Shocking, right? We are not a 'resource'. We are human beings. We have our own interests and lives and opinions and experiences.

Suggesting or acting as though our only value is in explaining autism to people who know an autistic person is displaying a shocking lack of empathy. All the literature used to say that autistic people used other people as tools. They said this apparently without irony, as that characteristic is way more descriptive of "translate my child" parents then it is of any autistic person I know.

Seriously. How is it even ok to act like 'letting' us tell you what it's like to be us, or what it was like to be us 10 years ago, is something we owe you? We don't owe you anything. It is arrogant and ableist to act like because you tolerate our existence, we owe you all the 'insight' you ask for.

Bonus points, by the way, for parents who want our 'insight' but otherwise want us to shut the hell up. If you want to know what I think about something-and I feel up to telling you-you're going to get exactly what I think about that something. We don't exist to make you feel better about how you think about or treat your autistic kid, either.

You aren't doing us any favors demanding we tell you about our neurology or insisting that we agree that your choices for your child are wonderful-we are doing you a favor by indulging these questions if we choose to do so.

The Privilege of Ignorance

Something people who talk about privilege don't talk about much:

Part of your majority privilege is the luxury of being ignorant.

I have heard so many times "I didn't know strobe lights were problematic". Really? REALLY?? I do not understand, what with the signs and warnings on things and the hurrhurrseizure jokes that people who wouldn't know a seizure if it bit them on the ass make. People who don't have epilepsy don't have to worry about it, even a little, so they make their inane jokes and gloss over the warnings and notifications. They don't realize how many lights are everywhere. A friend even said to me this week that he didn't realize how much flashy crap is everywhere until we started hanging out. Most people have the luxury of not giving a shit.

People are blissfully unaware of noises. They are blissfully unaware of smells. Oh so many people are blissfully unaware that their behavior and language marginalizes people. I had a dean at a college tell me she didn't know what erasing a person is while she was doing it. People have the privilege of not knowing the first thing about a person or group of people while simultaneously treating them as less-than. Many men are utterly unaware that being a woman is sometimes absolutely terrifying. People without disabilities are utterly unaware that being a disabled woman is even more so. They don't have to know.

I recognize there are things I have the privilege of ignorance about as well. I do not have to be aware of sidewalks and curb cuts and such, for I do not need a mobility aid. I know these things are problematic, but I don't have to think about them. There are a number of aspects of GLBTQ existence that I am unaware of because they aren't part of my every day life. I recognize that I am privileged in this way, that a lot of people do have to take a whole lot of other factors into mind, but that doesn't mean I know what they are.

In short, ignorance of other people's daily existence comes with privilege. It isn't someone's fault that they have that privilege, but it is their fault if they refuse to acknowledge it.

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 am not your inspiration.

I cringe every time I see a story about a person with disabilities doing something, anything. Why? Because the words "inspiration", "heartwarming", "overcoming obstacles", and similar set off my gag reflex.

My brain and body work differently from most people's. That doesn't make me inspiring. It makes me different. I happen to do things that most people with similar disabilities can't do. But guess what? I do things that most people without disabilities can't do either. It isn't inspiring that I do backflips, or teach kids to fly, or anything else that's a bit out of the ordinary. It just is. It's my life, not some story to warm the cockles of your over-privileged little heart.

And when people get all gooey over someone with a disability doing things within the realm of what's expected for a nondisabled person? I kind of want to go on a rampage with a spork. It is not inspiring when 2 people with Down Syndrome date. It's 2 adults having a life, and it's disrespectful and infantilizing to go "awwww" at it. When an autistic woman rakes leaves to pay for medical treatment, that's not adorable, that's a really sad statement on this country as a whole-don't be all "ZOMG I AM INSPIRED", but be disgusted that to afford necessary treatment someone has to go door to door. If you're going to be inspired at all by that, be inspired to change our world.

If you find yourself saying "That's so inspiring, I could never live with what that person does. And they do all by themselves! My heart is warmed!" you need a privilege check. Badly. It'd be upsetting if someone said it about you, and it's damn offensive when you say it about us.

Don't be inspired by us because we happen to be different. If you must be inspired, be inspired by our vision, our ideas. Don't be inspired by our existence. It's just my life, and I'm living it for me, not to warm your heart.