If you’re fuzzy on why changes to the ADA is such a big deal, I get it. I’m keenly aware of what being abled blinds you to. I’m here to introduce you to the thing that dominates my husband and I’s life: Logistics.
Hey. Abled friends.
This thread is for you. #HR620
Disclaimer: I am not physically disabled. My husband is. He has used a wheelchair since birth. I’m using ‘we’ in here because that’s how we’ve experienced it, and this is shared with his permission. OK? Ok.
The reality of living with a disability is Logistics. We don’t just do something. You figure out if we CAN do something. And then try to chase down the secret hidden puzzle of how WE do it. Because, I guarantee you, we are the exception.
We are always the Exception.
So: join us. We leave home. We don’t call for an accessible taxi because that will take an hour. We can’t take a zipcar because there’s no hand controls. Walking through the door is Logistics.
We take a bus, praying that no one else with a wheelchair, walker, baby carriage, grocery bag, or big-ass backpack has already taken up the two accessible spots on the entire bus. Two. If so, we’re out of luck.
Or we take a hip, tech-will-set-us-free rideshare. There is no accessible option in the app. We pray that the ride that comes won’t drive off when they see a chair. That the folding chair will fit.
Maybe we walk home. We fought city hall for neighborhood curb cuts last year! Only fancy condo construction has torn them out again. For months. So we walk in the gutter of a busy industrial street.
We see a show. We can’t buy tickets online. We have to call to see if one of the five accessible seats in the theatre is available. There's only one 'companion' seat. We aren't expected to have friends.
We book a hotel. We have to investigate how crappy the accessible room is. (It’s usually a less desirable retrofitted room.) How a ‘normal’ room is laid out. If we can ‘get away’ with being treated as normal. For once.
We fly. We introduce ourselves to the attendants. We PROMISE we won’t be a bother. That we won’t need assistance. That we won’t need to rely on the rickety chair they want to strap him to, Hannibal-style. We make the attendants nervous.
We fly. We successfully board, but the bathroom is twenty feet to the back of the plane. We don’t have our chair. We hope we don’t need to pee for the next nine hours.
We want to do a fun tour of a new city/country/landmark. We spend hours calling tour companies, emphasizing how low fuss we are, how independent we are, how we’re one of the ‘cool’ disableds, if only they have room to fold his chair with the luggage. We promise to be good.
We want to eat at a special restaurant. It’s in a historical building. We crawl on our knees and throw the chair up the stairs to eat there anyway. There are stairs and there are stares. We are everyone’s free entertainment.
We eat at a restaurant. It’s accessible, sure! Just call ahead and Jimbob will throw a board across the steps for you to roll up. Or there’s an accessible entrance! It’s the loading ramp, out back. Through the pee-soaked alley and trash cans. Can’t miss it.
We eat at a restaurant. It’s totally accessible! Except for the bathroom upstairs. You can hold it until we get home, right honey?
Work has a social event. It’s held at one of the above ‘trendy’ restaurants. But HR totally apologizes, okay? Be cool. We can be cool.
We want to go home. We become invisible to taxis. He hangs back until I flag one down and glare the driver into submission.
We apartment hunt. All the cute ground floor dog-friendly units are lofts with stairs. All the accessible units have been rented out to able-bodied people because ‘no one wants them’.
We apartment hunt. The ‘large’ bedroom doesn’t leave enough room to either side of the bed for a wheelchair to sit. he glitzy new apartments have bathroom doors too small to get through.
We apartment hunt. The building is totally accessible! Except for that one tiny step. In the common room. To all the amenities you’re paying for.
And this is important: We are white, educated, financially secure, fairly young and healthy aside from the wheelchair. In other words: BEST CASE SCENARIO. We literally are operating and interacting with the ADA on every privilege we can manage.
If you’re surprised by what I’ve said, keep in the majority of the disabled community has it so much worse. With so much less resources. Even WITH the existing ADA. #HR620
Now imagine how much worse, more hostile, the world will be if every target of discrimination had to ask each business, in writing, one at a time, to please not break the law. And they have 90 days to ignore them. And another 180 after that.
Imagine you had to beg every business to allow you to exist. Imagine people complaining about 'nuisance lawsuits' and 'support peacocks' to you. Your existence is a nuisance. Your existence is over legislated. Your existence is unnecessary.
I’ve had feelings over the news the last couple days, but I have this fear that, like an internal scream, if I let it out once I’ll not be able to stop.
The worst thing a woman can be in our culture is angry. But that’s how we got here in the first place, isn’t it?
If I’m too loud, too angry, people might not like me. If I’m too loud you might not buy my book. Give me that job. Say something when your friend rips my bra at a party.
We’re taught that likeability is protection.
I was a kid when Anita Hill testified. I remember sitting at the kitchen table listening to my father grouse about Hill, about Clinton, about all “those women” who he just didn’t like. Couldn’t say why. But couldn’t they just be more lady-like.
Yesterday was overwhelming with bad news. I'm tired of being overwhelmed. So being the cheesy writer I am, I decided I'm going to treat this timeline like a really unpleasant revision. No, really.
Most writers have the experience of getting an edit letter and having a visceral response. Untrue! This isn't fair! This was supposed to be DONE! I shouldn't have to revise this book AGAIN! Then the depression: this is hopeless. I'll never fix this book.
But you give yourself a day for that, you take care of yourself, and the next day you start. You do not fix the book. The idea of fixing the entire book is too overwhelming. So you find one tiny sentence, one tiny word even, that you can improve.
Trying to wrap my head around the atrocities happening on the border right now has reminded me of a story my family has. About Great-Grandpa's journey to this country. It was always a quaint, manifest destiny story, like most family legends.
I'm just now realizing it's horrible.
So great-grandpa is a son in a giant German farm family. They literally can't afford to feed him, so they pack him a bag and put him on a ship with the vague idea that 'cousins' in America will help him find a job. (Nevermind cousins are no where in NYC)
He is sixteen years old.
He somehow makes it safely to Ellis Island but, whoops, you have to pay one dollar to immigrate to America. A whole dollar and sign your name. This is how stringent the immigration laws were.
Losing Bourdain hurts. And as we've begun our ritual reminder of all the good ways to handle the goblins of mental illness, I'm going to talk about a bad way. And forgiving yourself.
And gin.
Yesterday was a very bad brain day for me. The anxiety goblins were muttering. The world was fire. I was going to ruin every good thing I could think of. No one could help and no one would really care. My chest was a trash compactor.
I'd like to say I did what I should: that I reached out, got help.
But I didn't.
Cause here's the thing: anxiety, and all mental illness, lies. We know the mantras, the retweets, the steps we're supposed to do while in the grip of it.
OKAY GUYS. I am back from the wilderness and ready to yell about a thing in case you missed it: the @SkiesofWonderBk anthology!
There is an AMAZING line up of stories by dear frens like @englishmace@invisibleinkie@waidr@Sybara and MANY MORE. My flash piece, LIPS OF RED, LIPS OF BLACK, about disaster queer pirate-wizards and airships powered by FEELINGS is in there too.
And from what I hear there's a flavor of story for every taste: heist airships! zombie pirates! Tour wizards! Angsty feather magic! It's a beautiful thing, is what I'm saying.
Y'know, everyone talks about the anxiety panic attacks, but no one talks about the anxiety naps.
Anxiety naps: You know, the point when your brain gets so rubbed raw, just one walking wound, that it goes: fuck it, and convinces you you're tired. Not because you ARE, but because your neurons are so overwhelmed they need to embrace the void for a skoosh. Avoidance nap.
Pro tip: the nap doesn't help. The nap is a lie. Just in case you are tempted. You just wake up convinced you are lazy and everything is awful everywhere all the time. Do one of your other anxiety response methods instead.