Man, I can’t even imagine that. I don’t even know 16 people I would want to hang around with in one big group!
Lots of couples and two of those brought their two children (12,13,14 and 17 yo). So all in all 7 households visited yesterday Most of this group has been friends since uni and I‘ve known all the children as babies.
We all got COVID in May, I assume I shared that. We’ve been back in the world since, as they tell us you can’t really get it again for at least 90 days.
Encountering the world again has been an interesting mirror on how my worldview has changed.
For instance, I guess Lizzo and Beyonce just had to change their lyrics after been called out by (whatever the label is) for using the word Spaz. It took me a moment to think through why. Then I realized, oh. MY daughter has diagnosed Spasticity. They’re talking about her. This is me and mine.
“Spaz” has been in the lexicon for so long; I’ve been using it for 40 years and even back then it had already lost its connection to the medical condition that birthed it. I really couldn’t care less about Spaz and spastic joining somewhere in the deep past.
But when I write “spasticity” and my computer underlines it in red, like, this isn’t a real word. That makes me feel like my family is invisible and forgotten. When I go to the airport and, at security, put my daughter on the luggage table so I can put my things into the xray and the TSA reprimands me with a “Sir, put her on the ground, she can stand.”
“No she can’t.”
Awkward glance at her feet and hitherto unnoticed orthotics. “OK.”
It’s going into a public bathroom and seeing, in the crack between panels, some everyday dude parked in the handicap stall on his phone and then trying to balance a girl, clean a seat, and facilitate her necessities without letting anything touch the floor in this 3x3 space. PSA: If you see me out in public, there is probably some degree of pee on my pants.
I mean,yes, I feel marginalized and excluded. I don’t feel any malice in it - we rarely see another family sharing our condition (prolly cause it’s so hard for us to get out…) and wouldn’t expect the rest of the world to. Most days, most people can get by assuming we don’t exist and that is, for all intents and purposes, true. Wherever we go, for a brief time, it’s not.
This whole Spaz thing makes it worse. Some faceless mob who doesn’t know us or our condition speaking up and saying “here, we’re protecting you. We took that word away.” All the best intentions in the world. But it highlights that they, too, don’t understand what we actually need and feel, what matters and what hurts.
Ah, that’s all a semi-focused ramble. What’s the point? I guess we’re out and about. It’s nice. It’s nice to see my parents in California and eat in restaurants and take the girls to aquariums and stuff. It also hurts some days. Here we are.
That hurts to read, but at the risk of being the very person you call out in the quote below.,
This use of the word in the Beyonce’s song was first bought to my attention from someone who has the condition themselves. I’m not sure if this will change your opinion or not.
You have their thoughts and prayers (and basically nothing else)
No, I greatly appreciate that. I’m a voice, I don’t speak for everyone. So is this other individual. And who knows how my daughter will feel when she hears idioms like spaz, lame, or crippled when she’s older. I’ll follow her lead.
At the root I hear the same pain and frustration there. IMHO picking fights over words that have lost their original meaning doesn’t change many hearts and minds, but it’s ultimately all different ways to remind the world that we are here, and there’s a struggle, and don’t over-focus on the ways we are different until you forget all the ways we are the same. It’s funny (not funny) how we as humans (me included) fail that, to one degree or another, across our lives and across history no matter what “difference” we encounter.
I really appreciate you sharing your thoughts on your daughter. I always say we are all more the same than we are different. But it helps to be educated about the various differences there are. It helps to know directly from someone who lives with the difference rather than second-hand guessing.
As for the word in question, „spastisch“ and „Spast“ used to be the same in German. It was commonly used as an insult among children/teenagers when I was younger. At some point—which I don‘t remember clearly—I must have realized there were real people affected by real conditions that would be hurt if I used the word as a slur. Other people must have realized, too, I haven‘t heard this used in a long time.
Words have power and how we use them shows much about us. But language is malleable and changes all the time. So why not change our words? And it is possible to just stop using words that have aged badly. Personally, I always try to go for the nicer, kinder more friendly and more inclusive variant—if I learn about it (or figure it out on my own). I do notice though that the older people get the more difficulty they have to change their words anymore. I think about this a lot. edit: I want to add that I feel that when we change our words, we change thinking and our behavior follows. I won’t give up thinking that this is how it works despite seeing enough examples out there suggesting otherwise. I am and remain despite everything an optimist and so I hope that these examples are just a minority. And so I advocate (in my personal circles) for kinder words and more representation and hope we end up being better people for it.
As language is only half part of the issue, it remains a challenge to be considerate in all the myriad ways out there when we meet different people. I hope despite those difficulties you could travel a bit and get to enjoy the fresh air with your family! Being stuck inside more than most, I am sure you could use the break.
I did wonder whether this is, at least partly, a cultural difference in what is considered insulting. The author of that article is Australian and Beyonce and Lizzo are both American. When I was at school in the '90s (UK) the word in question was definitely still in use as an insult that explicitly and specifically mocked people with cerebral palsy and other conditions affecting movement, often with an accompanying horrible “impression”.
@Acacia I’m glad you have been able to get out and about with your family (aquariums are cool ). I hope you have plenty of people in your life whose consideration for you and your daughter extends beyond moderating their language and into being advocates for what you most need.
I am tired now–last night was late… and then this morning I woke up at 6:30 am to an insistent beeping noise that we quickly verified came from outside.
It sounded very much like a smoke alarm… and it was coming from the apartment above us (we live in a house that has two two story aparments (Maisonette) stacked on top of each other in a row of seven. So it was easy enough to verify where it came from. This is the one neighbor we don’t get along with… so we went up there and he didn’t open the door when we rang… another neighbor had his mobile number but he couldn’t be reached on the phone. Nobody had a key (nobody would have had our key either). One neighbor knew that the guy is on vacation… so…
We ended up calling the fire department despite seeing no smoke or smelling anything. We ended up calling the fire department and told them exactly that… they came with a full complement of 3 trucks and sirens and police… they got in after several tries and quite some time without breaking anything except a flower pot or so. So,yay for that half open window. It ended up being nothing. Probably a spider inside the alarm one of the firemen told me.
At least private home smoke detectors are covered by the city, so nobody has to pay anything. But meh. Also imagine coming home and finding a smashed flower pot and a letter from the police that the fire department had to break into your apartment (they really could not get through the door, apparently our locks are quite good).
In any case, everyone was quite relieved, all the neighbors were curious and the police and fire department were very professional and friendly. I just wish it didn’t need to have happened at all. And now I am baking bread.
One of my neighbours came home to almost exactly that a couple of weeks ago.
She’d missed a welfare call and they immediately sent the police round to find out if she was OK. The police ended up smashing her front door down but having seen the carnage afterwards it was no mean feat.
Neighbour returned that evening from a day out.
That half open window was quite helpful… It was clear enough that there was no immediate danger to the building–especially now that they were there already–and with the neighbor himself on vacation, they really tried to go in causing the least amount of damage. I had feared they might just break down the door but it was quite the opposite. Very professional breaking and entering. Of course minus the stealth someone might need to employ if they meant harm That was some ladder… it took 4 people to put it up and take it down again.
I’ve had no hot water for over a week.
I managed to get a plumber round who told me it was a problem for an electrician.
I currently have an electrician here who started making out it was a job for the electric company.
Both checked the fuse for my hot water heater. Neither of them checked the switch the fuse was in. Electrician only checked at my prompting.
Guess what the issue was?
At which point you could have saved yourself some money and done it yourself
I’ve come back from 2 week holiday and I seem to have forgotten how to do my job…
But at least I don’t have to wear “proper” clothes again until the library visit on Thursday.
Kaftans are great. My mom used to have a few for hot summers. I remembered just before the heatwaves started here and got myself one
Just come back (well, logged back in) from a week off, to discover my research proposal has been rejected. It’s a bit of a downer - it was looking like a potential route to something more interesting, as my job doesn’t really play to my strengths, and manages to be both busy and boring much of the time. I’m also feeling under the weather, so really I’d just like to go back to sleep and try again tomorrow!
On Wednesday I have to get up extra early for some blood tests at 7am, so that’s something else to look forward to.
And I just ended up redoing his work.
He’d wired the new switch upside-down.
To check for sleep apnea, we have been issued a home tester unit for our 10 year old autistic son. This involves running a band with some kind of battery-powered box around his chest, a finger cuff with a cord that runs up his arm then back down to the box, and tubing that rests in his nostrils, goes over his ears then down his neck to the box. Tape is used to hold the tubing to his cheeks and the cord to his arm.
I do not have high hopes of this working out, but with some cajoling, we have managed to get it on him and get him to sleep. I will be sleeping in the kids room tonight to make sure he doesn’t destroy it when he wakes up (usually between 4:30-5:30 AM).
This is a whiny rant. You may wish to skip this message.
A year ago, I joined the team I’m on at work. Teams are small groups that do stuff, how big small is depends on what they’re doing. Some software teams are pretty big, infrastructure teams tend to be small, and when they get big they split up into focused pieces. In my team’s case, we do unspeakable things to real computers, so other people can do unspeakable things to virtual computers running on our real ones. We write tools to make them work the way we want them to, not the way the vendor did, and to shim the vendor’s tooling into the wider environment. There’s lots of cool stuff we’ve been doing, and there’s plenty of scope to figure out a cool thing, and to go do it. We also have to deal with keeping the environment up, expansion, refreshing hardware, and dealing with those pesky people running VMs. But the problem is that we’ve had a bunch of attrition. When I joined, I was the 9th member, which meant the operational load was spread out, dealing with pesky customers and such was limited to an oncall shift every 9 weeks or so. We’re now done to four. That means the oncall is once a month, which sucks. I can’t get anything important done when I’m oncall, there are just too many interruptions, and I’m always interrpted. it also means that a bunch of operational stuff has been shifted onto the poeple who are left, and there’s less time to do “interesting” things. I’ve also spent a bunch of time doing what amounts to legal compliance work, which is annoying as all heck. It’s frustrating as all get out. I have things I want to do, which would make a difference to us and our users, but I don’t have time to do them, because i have to do the other stuff that’s more urgent. There are plenty of things I do like about the job, very few of the people I work with are idiots (not even the high functioning programmer type of idiots, who can write brilliant code, but can’t tie their shoelaces, which I’ve dealt with other places.), the technology is cool, blah, blah, blah (also: the money is good.) My manager is working to fill the positions, but it’s hard to find people with the right skill sets. (Deep system and network knowledge, plus software dev, plus the right people skills, etc) We’ve actually filled a couple of the spots, but for reasons, they’re not starting yet, and they have to do the onboarding which takes a month or six weeks, so it’s going to be a while before it gets better.
That all sounds very whiny, but it’s been making me upset, so you get to hear it. Or not, if you headed the warning in the first paragraph.