This Chronic Life

[ID: collection of tweets from Amanda Hackwith @ajhackwith reading

“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 it 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.

W 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. The 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 mind the majority of the disabled community has it so much worse. With so much less resources. Even WITH the existing ADA. #HR620

No 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. Every restaurant. Every store. #HR620

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. Now call your damn senators. #HR620 “

Me: okay great, here’s a list of symptoms and how they affect me on a daily basis. here’s up to date info/ research on 2 things I suspect could help/ could be possible diagnosis and I was wondering if we could look into this

I’m one of the lucky ones. Not everyone gets the second chance I got, and learning how to reach out is vital to making sure we don’t have to rely on second chances.

Bookmark this. Reblog it. Share it with someone you trust or know is struggling. Learning how to ask for help (and how to recognize when someone is in crisis) saves lives.

Got something you need to do at a certain time every day (e.g., take meds)?  Start giving your cat a treat right before you do it.  You may have trouble remembering, but your cat absolutely will not.  

The House of Representatives voted in favor of destroying key provisions of the ADA to allow businesses to continue, penalty free, to remain inaccessible, possibly indefinitely.

All y’all who like to talk about ableism on here and are eligible to vote in the US:

Some people can enter a 140° car in the summer to get something out of the car. But if they stayed in the car, they’d die from the heat.

Some people can hold their breath underwater for 30 seconds. But if they tried to go scuba diving without the necessary gear, they’d drown.

Clearly, someone doing something for a short period of time does not automatically mean that they can do it indefinitely with no problem.

gets super emotional, cries over the smallest things, empathetic™, can’t handle anything, irritable, overstimulated™, anxious

- shout out to the kids who were “so bright” and ‘heading somewhere” and had to drop out because school was too much to handle along with mental illness

- shout out to the kids who struggled to get where they got before they dropped out

- shout out to the kids who tried and tried and tried and still couldn’t finish

What the doctor hears: