Past, present, and future co-mingle along the Mon River Trail, where moss creeps over scattered heaps of slag, a waste product from the area’s now defunct blast furnaces. As nature softens the scars left by the region’s turbulent, boom-and-bust industrial past, the memories of the people who worked the furnaces also fade into her enveloping, green cloak.
Like, are we gonna have to go back to circa-2012 list all your various identities, traumas, and disabilities in your sidebar to keep people from laying down the most ungenerous takes on your posts?
I’ve seen these posts saying, in the words of one of them, “If your job requires you to go against your religious beliefs then perhaps it is time to change careers?” in reference to healthcare workers and government employees who want to deny services to lgbt ppl or others whom they condemn, and i just feel like those posts don’t attempt to understand internal logics at all
like, fundamentalist christian doctors don’t deny trans people medical care because they believe that somebody should provide the care but they just don’t want to be the one to do it. they deny the care because they don’t believe the person should receive care. Their refusal to provide care isn’t just “oops you’re in the wrong field,” as if they were a person with a peanut allergy working in a peanut factory. It is an intentional and calculated part of why they are in the field in the first place — to extend religious control and condemnation to the medical realm.
the pediatrician who spent an entire consultation telling one of my friends at 16 or 17 that he would go to hell if he kept choosing to be gay wasn’t just “not cut out for the job,” he was specifically in that job in order to do that particular thing. Kim Davis didn’t deny the gay couple a marriage license because she couldn’t personally do it, she denied them a marriage license because she thought that people like them should not get marriage licenses and that a clerk should deny them and by god she was going to be that clerk
Saying “if you can’t provide services then why are you in that job!!!” to fundamentalist christians almost always misses the point — that they are in that job specifically so they can selectively deny service
So many people have reblogged this with comments about how this isn’t a thing and how nobody goes into a field specifically to exclude people, and that people pick jobs based on what they like doing, just like most people select a career. And I see where they are coming from in some ways. My wording can be read as meaning that Kim Davis’s primary motivation for becoming a county clerk was specifically to deny gay couples marriage licenses, which isn’t exactly what I mean.
What I mean is that, for a specific subset of fundamentalist Christians, they will say “we need more Christian doctors” or “we need more Christians in government,” and what they mean (and what everybody in the community hears, particularly kids and young adults thinking towards careers) is “we need people in those positions who will discharge their duties according to a fundamentalist Christian ethic, and refuse to allow _______ to happen on their watch.” That “_______” can be filled with anything from abortion to trans acceptance to issuance of marriage licenses to gay people. Their epistemic framework is specifically fundamentalist Christian and not “professional,” and they should be recognized as such, not just people whose professional ethics are superseded in one or two places by their personal religious practice.
I’m guessing this also applies to doctors who are straight-up disablist.
I know there’s a problem with people going into medicine because it’s prestigious and they want the admiration, rather than having any concern for patients. That’s fairly well-acknowledged, culturally, though it could still be better.
But I wonder how many are in medicine because they hate not just sickness – which would be on shaky ground – but sick/disabled people.
Like they’re subliminating their urge to “clean up the town” into a very socially-accepted course of action.
And if they can’t fix you immediately – ie. make the problem not be a problem now – they’ll take the Other Route, of removing care so that you die as soon as possible.
All subconsciously, for most of them, but it would explain their actions very well.
Yeah I suspect it’s complicated. Meaning, sometimes absolutely, sometimes no, sometimes a combination, and sometimes even they probably don’t understand what the hell they’re doing or why. But there are definitely people who go into fields with positions of power because they want to do harm. Hell, we already know that there’s serial killers who prey on sick and disabled people by becoming doctors or nurses or LNAs on purpose to gain easier access to us. (Ever wonder why you never hear of them even though they’re some of the most successful and prolific, and there’s little to no outcry or fame even when they’re caught after doing shit that makes the most infamous serial killers look tame? …yeah.) That’s an extreme example, but if that exists (and is as widespread as it is), then every other gradation along the way in terms of malicious intent, both conscious and otherwise, has to exist as well.
I’ve tried that. And sometimes it helps for a little while. But then if people do further research they learn it’s CFS and it ends up only being a brief respite from the overall stigma. I’ve even had a few people think I was trying to bamboozle them with scarier medical jargon.
I tend to use Chronic Fatigue Syndrome for a couple of reasons.
First, it tells people what it is in the name and I like that simplicity. Some people do feel it downplays how tired people actually are. I can see that. I would be open to expanding the name to Mega Chronic Super Fatigue Syndrome. Which is a shorter version of my other name idea…
“No, you’ve never been anywhere close to this tired. Even that time you studied late and had a test in the morning.” Syndrome.
I also feel like if I can help eliminate the stigma using the harder path, the results will be more robust in the end. If I can convince someone that CFS is often a debilitating horrible condition and undo all of their preconceived notions, I know that work I’ve done will stick.
I just don’t know if tricking someone out of ignorance is a great longterm strategy. It’s not a product that can be rebranded. People will catch on eventually. Or it won’t stick. I mean, I tried calling him Dwayne for a while. I tried smelling what Dwayne was cooking. It just didn’t take.
CFS is part of my identity and I don’t think I should have to call it something else to appease the ignorant. It shouldn’t matter what it’s called. It’s real. It sucks. And I am determined to convince anyone who disagrees otherwise no matter what they refer to it as.
That said, I do not judge anyone who wants to use alternate terminology. CFS is just the label I prefer. And if there is some research or evidence that says changing the name will have a significant impact on eliminating the stigma, I might reconsider. My anecdotal findings say that it doesn’t change much.
Also… it’s possible… that mayyyybe… perhaps… I might avoid calling it that because I have never successfully pronounced or spelled Mycologic Encephalogram correctly on the first try.
Yes, I’m aware I just said mushroom brain scan.
Close enough.
This is a good response. Also reminds me of how the r word used to be a medical term, and we had to stop using it as a medical word because people started using it as a slur. Sometimes playing the language game isn’t going to help if the concept behind the word is what people are being prejudiced against. The idea of someone being exhausted for “no reason,” to the point it’s disabling, is what people object to, not the word you use to describe it. The foundation of ableism has two pillars: One, that disability doesn’t exist, and two, if it does exist, then the people who have it are not full citizens and don’t “deserve” to be a part of society.
I had a really weird experience with CFS. Which is it was my diagnosis for years, I had no expectation it would ever not be my diagnosis, and then it turned out I had a congenital neuromuscular condition. I still think CFS was a useful diagnosis for me to have. Because:
1. When I was first diagnosed with CFS, I’m not even sure the genetic test existed for what I actually have.
2. It’s a massive fluke in many ways that I was ever accurately diagnosed with what I have. Most people don’t even get tested, let alone confirmed as having it.
3. I really think CFS is basically not a term for an actual specific condition, but a term for a lot of things that can happen from a number of chronic illnesses. Some of those illnesses are ones we already have names, diagnoses, and tests for. Other ones are ones we don’t. It is useful to have umbrella diagnoses like this because even when we have other diagnoses that are more accurate for specific people, the chances those people are all gonna get tested for exactly what they have are pretty slim, and people still need services and assistance in the meantime that can be accessed by having a firm diagnosis of something. And for people who have something that really doesn’t have a name or diagnosis for it yet at all, these umbrella terms are gonna be all you’ve got. And the way the system is set up, you need a name for what you have in order to get help.
I don’t like ME as a term because it really makes it sound like there’s one specific cause and there isn’t. Like, encephalomyelitis is a term with an actual meaning and it’s not there in everyone with CFS so using it isn’t universally accurate and doesn’t really help with credibility except sometimes on an individual level. (But on a group level it kind of takes away from credibility.)
I do think though – in my specific situation – that the fact I was never even tested for myasthenia gravis is kind of messed up. Like, I would’ve failed the test. Because MG is autoimmune and I have congenital myasthenic syndrome which is genetic (complicated but the MG and CMS are very similar in how they affect people, but different in origin). But that I was never tested for MG anywhere in the assessment process that eventually got me diagnosed with CFS seems very messed up given the symptoms I came in and told them about. (Which in retrospect, seeing my records, were incredibly specific and much more in line with myasthenia than CFS. I was just also dealing with some stuff on top of it that made it complicated, and also dealing with some serious assholes when it came to doctors.)
Like, I don’t blame anyone at all for not knowing what I had. I would not blame anyone at all if my diagnosis remained CFS for the rest of my life, I never discovered Mestinon, etc. The tests for what I actually had didn’t even exist when I was growing up or when I first sought help for “CFS”. (Which is one reason I think having diagnoses like CFS is very very important.) But people not even looking, that’s where I start having problems. And I found out at one point that there was a particular doctor who actively discouraged people from looking, threw up roadblocks, and actively sabotaged any conception that I could have any condition that wasn’t “all in my head”. And he did this without even doing any tests, it was just based on the idea that crazy people can’t also be sick (if only). I
It really threw me when I tested positive for CMS, because I’d been so used to the idea that stuff was all in my head that concrete proof actually really fucked with my head and messed with my entire sense of identity. It was easier in some ways to believe that either it wasn’t real or it would never be truly diagnosable even if real, that getting a firmer diagnosis shattered my entire worldview in a way I never expected.
Note on that last paragraph: I’m not not not saying that CFS is all in people’s heads. But given that I personally half-believed people saying things were in my head, a vaguer and broader diagnosis was much easier to cope with than something as ultra-specific as I ended up with, and I was not expecting it to have the impact it did when I got the diagnosis. Which was basically to make me so terrified I couldn’t even read about CMS for a long time after I was diagnosed, and couldn’t bring myself to think about it much, and really wanted to run away and hide in a way that was… totally unexpected. The way being told certain things about yourself affects your identity can be deep and disturbing and hit you in ways you never imagined. And I not only never expected a specific diagnosis of what I had, but never expected that getting a specific diagnosis would make me feel like I’d been shattered bone-deep.
So if you ever end up diagnosed with something specific, whether it’s CMS or lupus or something else really specific that replaces your CFS diagnosis – be aware that it can be emotionally grueling in ways you never expected, at least if you’ve internalized any of the crap most of us get told (and most of us do internalize at least some of it). Sometimes things will hit you in ways you never expected in a million years, and that’s what happened with this… I can’t remember how long it took me to come to terms with it even vaguely (and I haven’t completely yet), but I seem to remember an entire year of running away utterly terrified from even thinking about CMS much.
Yeah similarly here, “fibromyalgia” for me ended up being mitochondrial myopathy instead. Cfs/me/fibro all get used interchangeably and most doctors are just lazily dumping people in there specifically because they, despite the evidence proving it is as legit as a vaccines causing autism, treat it with graded exercise and cbt, in other words, hand them over to therapists instead.
And yeah, maybe it is in fact it’s own thing. Maybe it is another name for an existing thing. Maybe it is many different things. But if you are not confident you have been tested for EVERYTHING that could possibly cause your symptoms it is a good idea to check that. There isn’t really anything to lose and you might find a new treatment.
Yeah I’m really lucky that I hit the CFS diagnosis before graded exercise and CBT became the standard treatment, and most of what I was able to get out of it were things like wheelchairs and other medical equipment I sorely needed. By the time we found out about MG and CMS (I was diagnosed with MG at first because unless you’re diagnosed in early childhood they generally figure it’s MG unless prove otherwise), they’d switched me from “CFS” to “neuromuscular condition” and “chronic fatigue” was just listed as a symptom rather than an actual diagnosis, or something generic-sounding like that. But whatever it was and whenever it changed, the CFS label did allow me to say “Hey there’s something going on here that requires this and that equipment and accommodation even if we don’t know what the hell it is.”
It does seem weird to me though that the medical system is set up in a way where you need a way to write things down even if you know you don’t know what’s going on. That’s how I ended up with one of the most vague of vague classifiers I’ve ever gotten – “central nervous system disorder not otherwise specified”, which until there was a catatonia specifier for autism stood in my chart for autistic catatonia and a bunch of other stuff I had going on that didn’t have names yet for over a decade. You’d think they’d have a way of saying “Something’s going on, we don’t actually know what, but it’s obviously something, and it behaves like this, and it requires that, so do that regardless.” Without having to have any name at all. It’d be more honest. And I really think doctors need conscious practice at saying “I don’t know” in order to be good doctors.
when signing out forms to apply for disability / filling out a form for diagnosis
you’re supposed to fill it out as you on your worst days
like, I filled out forms that said I could do most things usually
like, my doctor added in the conditions like “yeah, they can feed themselves when not stressed” “they can do this when not stressed”
but how I should have filled it out was more like
“some days I can’t feed myself” “some days I can’t leave the house”
My doctor didn’t even know this, but I talked to someone who had worked with people with both developmental and intellectual disabilities for a number of years, and she told me to write down how it is for your bad days
this should be a thing they tell you, but it isn’t
part of the reason I didn’t get my autism diagnosis as soon as I should have is because I filled out forms wrong!
This also goes for filling out forms for disabled parking rights. I’ve been rejected multiple times for a pass cause I didn’t find this out till recently.
Wow
Also you’re generally supposed to fill it out as you are without help.
That throws me too. Because the more help I get, the more capable I get. It’s easy to forget what happens when the help falls away even partially let alone completely.
This is Arwen, she’s a Husky/Kelpie mix and a little Asshole:
“I wonder if she can jump?” my dad asks the first five minutes we have her. She perks up at the word, and clears a six-foot fence form sitting on the ground. “Oh.” Says dad. “Shit.”
Later that night she got up on the counter and ate three pounds of corned beef in roughtly 68 seconds but this was considered part of the learning curve of having a new dog.
I wake up at 4 AM to the sound of the toilet being flushed repeatedly in the hall bathroom, and assume plumbing is now posessed by angry and wasteful ghosts. I get up to disconnet it and find her in the Bathroom, standing to flush the bowl, then shoving her head in to drink the running water. I’m not totally awake, so I stand there like an idiot trying to understand this, and my sister gets up to see what the noise is, sees the same thing and also stands there. Fiance notices my absence and does the same. Mom eventually wakes up and finds us standing around like very confused zombies and almost joins the parade of baffled zombies before shreiking “THE WATER BILL!” We got her a circulating water bowl after that.
My parent’s don’t have AC, but they haveone of those “fridge on top, pull-out-freezer below” fridges. Last summer, we were remarking that we might need to shave her so she didn’t get heatstroke, to which she looked up and made a disgusted noise at us. …Then got up, used the dishrag to pull open the freezer and climbed on top of the frozen vegetables, stretching out and sighing contentedly. “Arwen,” Mom began, but was interrupted by a loud ‘WHAAAaaaaarrr?” from Arwen. “Ok you can stay there for now but we’re getting you a kiddie pool so you have to get out when we get back. Don’t eat anything.” She ate a bag of frozen green beans and farted for three days straight.
Took her walking along the lake with the long lead so she could sniff things to her hearts content. She went about shoving her head in the undergrowth, usually coming up with her head covered in leaves and pollen.
Except for the bush where she came back out with a 7-foot Bull Snake wrapping itself around her ehad and neck, trying it’s best to strangle her before she can eat it. She immediately ran back to me, the parts of her face not occupied with the snake arranged in a gleeful expression of “Look! I found Snacks!”
I screamed, not immediately regognizing that it wasn’t a rattler, and fell, splitting my knee on a rock. The screaming made her let go of the snake, but I still had to grab her and wrestle the snake off her because it lacked the sense to just scuttle away. I finaly got it lose from her (Despite her best effort to continue trying to eat it and turned around to fling it off the trail-
-And directly into the face of one of my 90-year-old neighbors who’d come out to see what the screaming and profanity was, making her collapse.
I’m pretty sure being told “I accidentally threw a snake at my neighbor.” was the highlight of that EMT’s day. Dottie was unharmed but she still doesn’t speak to me.
One day, we left her in a Harness and overhead tether in the (at the time) unfanced back yard so she could enjoy some relatively free-range outdoors time. I walked by the window not a minute later to find her completely GONE, and race out to the yard to find her. It took me a good heart-pounding five minutes to realize the overhead tether was goign UP into the ancient silver maple and realized that 1. Arwen can apparently do something really weird with her shoulders where they pop out sideways, allowing her to bear-hug the tree and 2. climb a good 40 feet into the three to fight 3. A porcupine, which i didn’t even know LIVED out here.
Fortunately, Porcupines weigh considerably less than Awen and she couldn’t get a good enough foothold to get all the way up to it, but I still had to climb up there and lower her down, barking dog profanities at the porcupine the whole way.
My parents recently acquired a mechanized recliner which has been instumental inmom’s hip surgery recovery. Execpt that Awen Also likes lounging on the furniture, and is more than capable of hitting a large, elder-friendly button with her paw. So now when she gets back from a walk or the dog park she makes a beeline for the living room, get in the recliner and pushes the button until it’s flat and stretches out in it.
My parents didn’t have a problem with this because she gets out of the chair when they ask her (Mom even tells her “Go get my chair ready” in winter because she does a good job pre-warming it), until last winter when Arwen taught my dog Charlie, another devoted couch animal how to do this.
One afternoon there was a tremendous outburst fo barkign and snarling from the living room and we rished in to find both dogs in the recliner, Charlie on the fully-reclined back and Arwen on the elevated seat and foot rest, bellowing at eachother for control of the recliner, thier movments having pitched it back to it’s two hind feet, the device swaying to and fro like a leather covered boat upon the high seas, a furry mutiny on board. Neither dog was willing to yeild the plush throne, nor to listen to the humans yelling at them to knock it the hell off, until Arwen tackled the usurper, kocking him off and managing to cantaleiver the recliner clean over, flipping it into the hall, both dogs and all humand miraculously unharmed.
She still doesn’t let him sit in it.
I love her so much.
(If you got a laugh out of this, please consider donating to my Tip Jar or Paypal to get Arwen (and Charlie!) nice treats)
Evening reblog with an additional Shenanigan I just remembered:
One of the regulars at the dog park was an unfixed basset hound with an obnoxiously indifferent owner. “Brad” shows up pretty much to smoke weed and let “Bojangles” harass the other dogs, in spite of regular complaints about Bo starting fights and trying to mount every dog, leg, and toddler in sight.
One evening, Bo was particularly interested in Arwen, aggressively following her, nipping her heels and trying to mount her, even after her usual wolverine-like Snap’n’Snarl, which has tended to discourage unwanted suitors before. Brad was Too Damn High to notice, as usual, but mom knew that if Arwen actually bit Bo, Arwen would be the one in trouble and was trying to call her when Bo made yet another attempt and Arwen finally had it.
Instead of rightfully tearing his face off, Arwen instead did what Mom described as “A Judo-style front-flip” that pulled Bo clean off the ground and threw him on his back, Arwen landing on her feet like a cat. Bo’s stubby little legs didn’t allow him to right himself before Arwen jumped on him, front paws slamming into his saggy basset balls, squatted over his face, and peed on him.
“ARWEN NO!!” howled my mother as nearly everyone else present laughed, but having made her point, Arwen daintily got off Bo, and trotted to the gate, ready to go home. Bo yelped but got up and skulked away, only moderately bruised, cowering under the bench by Brad, who finally noticed something might be amiss.
Mom remembers hearing “Dude, why is my dog all wet?” right as they were leaving. Apparently nobody told him what happened, becuase Brad still brings Bo to the park, but Bo has much better manners now.
I read this whole thing to my mom and upon reading the end part she was like “OH MY GOD! Our dog Lady once flipped another dog and I didn’t know it was a thing dogs could do!!”
So there’s that.
Update: Arwen was at the vet’s office for a check-up and daycare, and decided partway through the afternoon that the other two kelpies were annoying her, but she didn’t want to go inside to be kenneled for a nap, so she instead…
…ninja’d her way onto the vet’s roof despite there being three people in the yard watching the dogs and no clear way up there. She had a pleasant hour of watching the vet staff try to figure out how she did that and how they were going to get her down before mom came to pick her up.
“Arwen, get your furry butt down here!”
At which point Arwen obidently got down by jumping into a nearby tree that’s technically inside a neighboring house’s yard, shimmied down that like a bear, then walked out of their side yard and back around the block to come sit at Mom’s feet, putting her paws up like she expected a treat.
That tree is not accessible from the daycare yard. We still have no idea how she got up there.
Shine on you beautiful bitch.
This just gets better and better every time i see it
I…
I have fostered doggos for a good majority of my life and my brain simply cannot process half of the bullshit in this post…
1. She’s a mix of two extremely smart breeds 2. She’s a mix of two extremely energetic breeds 3. The inmates trained her to do lots of “Extracirriculars” like veritcal leaps, how to climb chain-link fence, agility courses, physical-comedy type tricks becuase they finished teaching her the regular Service Dog Cirriculum and wanted to keep working with her. 4. Due to said Extrcirriculars, she doesn’t have any fear of heights, strangers, animals, or the nonsense of other dogs.
She does do the Professional Service Animal thing when we put her vest on, but then she’s working and has things to do like teaching social skills to people or being a living stress ball to someone having a bad time, so all that brains, energy and training can be put towards a productive end, but if she hasn’t got an active job, Shenanigans Ensue.
I love everything about this omg
Update:
She ate a four inch hole in the carpet because someone dropped a pork chop there. She’s completely fine, it all passed without so much as an upset stomach on her part.
-also ate the garden hose because we weren’t spraying her with it.
-conned one of the guys that installed the AC out of his sandwich by pretending to bark at something on the other side of the house, and doubling back when he came to investigate.
-is back on the therapy circuit helping kids in a summer school program get better at reading by having them read books to her. Her favorite student right now is a boy from Venezuela who is still learning English who gives her a big hug every morning. She doesn’t normally like hugs but she puts a paw on his back to hug him back.
Urocyon's Jaunts 2.0 
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