Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Zisk, Alyssa Hillary. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Zisk, A. H. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from http://yesthattoo.blogspot.com/post-specific-URL.

Sunday, August 11, 2013

I went to Autreat

So like the title says, I went to Autreat. It was actually a lot of fun. It was also really tiring, for multiple reasons. One is the whole thing about needing sleep. I got the university we were having Autreat at, in California, Pennsylvania, between 9pm and 10pm Monday if I recall. I was pretty tired. My roommate was really cool, and she was actually on the same train with me. (I spent Sunday in New York City for their ASAN social meetup, then took public transit to Arianne's house, stayed with her, and took the train with Jason and my Autreat roommate down to Pittsburgh, where Beth picked us up.)
So I get there. Monday night I mostly just go to sleep. Tuesday morning I get up and go to breakfast. Do you have any idea how great it is to suddenly be somewhere where most people are like you? Neurotypical folks get to be around mostly neurotypical folks all the time, so they get used to it, but Autistic people are spread out and people often don't like us to hang out with each other because they think we'll start acting more autistic or something. Which, well, we kind of do. I just don't think that's a bad thing. There are presentations. There is a pool. There are Autistic people I'd not seen in a while, some who I had never managed to meet in person before. There were not fluorescent lights.
Wednesday was mostly like Tuesday, though there was a pretty big issue later in the day. I'm not the one it happened to, so I don't think it's really my place to talk about it. It seems to have been mostly resolved? It was also T-shirt painting. I painted my ANI Autreat 2013 shirt and my 5A (Autreat's Annual Amazing Adulthood Acclamation) shirt with my Because Patterns blocks. With luck I'll actually remember to upload pictures. I also handed over the T-shirts that Amy and her friend ordered.
Thursday morning was given to helping with fallout from the events of Wednesday night. But I made it to Kassiane's presentation on Autisifying Habitats, which was super-awesome. Kassiane's autisification stuff are the only organizational strategies that have worked for me even a little bit. (If I somehow become President of the United States, I want to hire Kassiane to Autisify the Oval Office. Otherwise, I will have to see if I can get her to help me Autisify wherever I wind up. And offer of pay at level I can afford will be made. President of the United States is kind of higher-paying than most engineering jobs, but engineers are still decently paid.) Thursday was also 5A. Which was cool. Kassiane was my first witness, and Jim Sinclair, who ran the ceremony, talked some too. I was only semi-coherent, so my speech was short. I think I mostly fanpersoned at Kassiane, which I've totally done before. Yes, yes I have. And Jim talked about the fact that WE BOTH LOVE PURPLE. ALL THE PURPLE. Yeah. I think it might maybe be an autistic thing the level to which we want ALL THE THINGS to be our favorite color? Could be. AND PURPLE. And then karaoke. We had a bunch of Autistic people doing karaoke. And it was fun. So Autreat. Yes. Autreat was good.

Saturday, August 10, 2013

Wait, I'm Injured?

Trigger Warning: hospitals, fairly major injuries

I wrote this one for We Are Like Your Child first, so it's reprinted from there. 

I hear, sometimes, people talking about how scary it is when their kids don't know that they're injured because of their high pain tolerances. Been there, done that.
I have something off in the cartilage of my left knee, along with a small cyst, and it looks like I may have focally fractured it a couple months ago. Thankfully, it's not a tear. I have had it for a bit over two months. I didn't realize, because those are supposed to hurt. And, well, it didn't, mostly. I assumed that I had a minor sports injury that was most of the way better and that I just wanted to make sure it was going to stay fine during the year in China. But. It is apparently not minor. It's something that will recover with time and physical therapy, but it's not minor. This is right now. I am an adult, and I have had a major injury for two months without realizing it because my pain tolerance is too high.
I do this fairly regularly. There are three fractures I've had that I know of which never made it onto my medical records because of this kind of thing, and there are three others that may have happened (This current one is one of the maybe's.) One was a broken nose, I never made it to a doctor at all from it but there are people in my family who know what a broken nose looks like. That was my senior year of high school.
One was a focally fractured shin. That's a leg bone. I walked to school the next day. I walked at school the next day. I was walking around on a leg that had a broken bone in it. (Yes, I am sure that I broke it. There is still a dent in my shin, four years later. I assume it's permanent. No, I did not take any pain meds for it. Not even a Motrin.) I was sixteen. I got it passing out into a swimming pool at a swim meet, because I don't always know when I overextend myself. That's the only time I did so badly enough to lose consciousness, thankfully, but that could have been a lot worse than it was. (I came to in the pool and had already swum to the edge by the time most people realized anything had happened. The whole breaking my leg on the way down thing, even if it didn't manage to hurt enough to make me realize it was broken right away, probably woke me up.)
One was a broken foot. I went hiking the next day. I didn't get it checked out for a month. My host family never even knew I was hurt, at all. (I was staying with a host family in Shanghai at the time, and I was alone in Hangzhou when I broke the foot. Yes, I speak Chinese.) There was some medical fail involved in this one not making it to my records- the doctor actually saw the point of the break on the image a month later, and said it wasn't a break because to look like that the injury would have to be about a month old... Yes, the doctor had been told the injury had been a month prior. I don't think that "This person walked around on a broken foot for a month" is a statement the doctor could handle. I was eighteen when I did that. I was a legal adult when I did that. (I was seventeen for the nose, and sixteen for the shin. Twenty for the knee issue, which is a thing that is going on right now.)
That's not to say there are no advantages to this. It's a pain at hospitals, where no one understands that this kind of pain tolerance is a thing, but it also means that when an 800-lb Old Spot pig attacked me I was able to get myself out of there, and I didn't miss a single day of school from it. It happened on a Tuesday where there was no school because of Rosh Hashonah, Wednesday was no school for the same reason, Thursday I was at school, and Friday I rode my bike to school.
I've had to learn other cues for a lot of things. I'll apparently start acting like I'm in pain a bit before I feel the pain, though it's not by much. I get goosebumps normally, though I tend not to feel cold until I'm close to hypothermia, and the really boring synesthia of some sounds having temperatures doesn't help. But even with the things I've picked up, I can miss broken bones because of my pain tolerance. I've had 3-6 broken bones in my life, and my pain tolerance is the reason that none of them are on my records. (It's also why we're not actually sure what the number is.)

Friday, August 9, 2013

Response to #Anarchism and #Neurodiversity

Trigger Warning: Police Brutality, Ableism, Bullying, Pathologization

Today (the “as I write this” today, not the “when this gets published” today,) I am responding to a piece in Slingshot. Yes, Slingshot is an anarchist publication. No, I don't think I'm an anarchist. Even if I'm not an anarchist, I can still look at anarchist writing with my neurodiversity paradigm eyes and see what thoughts I think. That's what I'm up to.
Anarchism and Neurodiversity,” by Zane Bolonga. That's the one I'm looking at right now. I think it gets a line by line response, since this is a kind of important concept.
The concept of neurodiversity is largely unknown within the anarchist community, or any community, for that matter.”
Unfortunately true. I suspect this article is meant to help change that for the anarchist community, which I totally approve of. I can think of some common interests anarchists and neurodiversity activists could have, and we don't need to agree on everything to work together on those.
Neurodiversity is the idea that people with neurological differences should be recognized as equals to neurotypicals, or those who are considered neurologically “normal.”
Reasonable. I prefer Nick Walker's listing of how the neurodiversity paradigm is defined, but this one is OK. There are some things I'd say aren't quite right, but I don't think the errors are ones that are particularly damaging. And, well, it's not as if I think I could do better defining anarchism in a sentence.
Neurodiversity refers to a scientific fact, a paradigm, and a movement. The fact is that brains are not all wired the same. The paradigm is about how the fact should be viewed: as a form of human diversity that has privilege and oppression dynamics much like many other forms of diversity. In our case, neurotypical refers to those who are close enough to the alleged/socially constructed norm to get privilege from it. The movement is basically about spreading the paradigm and applying it to life stuff, so far as I can tell. Part of the problem is that it doesn't all really fit in one sentence.
Police brutality is a huge problem facing the neurdiverse.
Picky language moment of I don't think “the neurodiverse” is a good way to refer to neurominorities/neurodivergent people as a group. It's calling people diverse only if they are in the minority or disprivileged group, which reinforces the idea of the dominant group as normal. (Better that than calling us people with neurodiversity, which is really gross and yes that happened.)
But yes. Police brutality is a huge problem facing neurodivergent people. Police tasered an autistic 11 year old girl. Security killeda man with Down's and I don't think they're even facing charges, though it was ruled a homicide at least.
Instances like the death of Kelly Thomas, a homeless schizophrenic man who was beaten to death by police in Fullerton, California, sadly aren't that rare.
No. They aren't. Also, ouch, hadn't known about his specific case.
I personally have faced such discrimination on a (much) smaller scale, having been harassed by police who think my nervous tics and sometimes odd behavior are “suspicious seeming.”
You're not alone. Lydia wrote about being presumed drunk at the subway. I don't know if An Anonymous Newtown Autistic has written about stuff that happened specifically to him in this area, but I'd bet that it has. I mostly just get treated like I'm a little kid when I'm acting weird- I think the fact that I am white and read as female has a lot to do with that. (Actually androgyne, FYI.)
Society's attitudes towards the neurodiverse are just as badly misinformed and negative.
Yeah, that. (towards neurominorities? Towards neurodivergent people?) Among other things, society seems to think we're more likely to be violent or abusive. Statistically speaking, neurominorities are less likely to be violent, and we are significantly more likely to be the victims of violence, bullying, abuse, sexual abuse, etc.
There have been a multitude of incidents of bullying towards the neurodiverse, especially common with schizophrenics.
I wonder what the language preference is for folks who actually have schizophrenia. I should ask someone who does, but if I know anyone who does I don't know who they are. Also, yeah, lots. I was bullied. Henry Frost gets bullied by his teachers. Not by students, by teachers. ONLY BY TEACHERS. Neurodivergent K wasbullied.
On top of experiencing bullying, many schizophrenics are homeless due to the lack of services this post-Reagan regime provides.
Somehow I suspect it's more complicated than that, since those homes have historically tended to be “locked in an institution,” and the services have tended to be getting forcibly medicated and restrained. Medication is fine. Medication can be great. It's also something that the person taking it needs to have an informed say in, and where “I don't want this, we should try something else” gets listened to. There's a lot of medications out there that can help, and people need to be able to choose the one that works best for them if they really do want/need medication. That doesn't make the current lack of services OK. It just means that what there was before isn't actually OK either. Real services, noncoercive ones with enough safety that a person who knows they have a problem they need help with would find seeking services to be in their own best interests, are what we need. (The loss of rights with entering a lot of institutional settings means it's often not in our own best interests to enter the system.)
Being both homeless and schizophrenic puts these individuals in double jeopardy; they are seen as wandering goons.
No arguments there. People are often so afraid of homeless people because of the assumption that they are mentally ill and therefore potentially violent. Which is made of ableism and classism.
The rates of bullying for those with Autism Spectrum Disorders are also very high.
AUGH. Pathology pathology pathology. The very name for use being used here is made of pathology. (I'd take “person with autism” over this, and as you know if you read my blog regularly, you should nevercall me a person with autism. Ever. I'm Autistic. Some people prefer person with autism, but within the neurodiversity movement, A/autistic are the majority by far. If you're courting the neurodiversity movement, use identity-first for autism.)
Now that that's taken care of: Yeah. The three examples of bullying I gave before are all for Autistic people. I've not met a single Autistic person who went to a public school and wasn't bullied. I assume they exist, but I don't know of any, and I don't think the people I know do either.
Harmless stymieing and narrow interests make this society angry towards the neurodiverse.
I think spellcheck turned “stimming” to “stymieing,” since Open Office gives me the little red squiggle under stimming but not under stymieing. The two examples given suggest that this sentence is really about Autistic people, so I'd suggest saying “towards Autistic people.” Other neurominorities get in trouble for other things, though stimming is on the list for a few others.
Negative attitudes towards the neurodiverse stem from an oppressive mindset.
Well, yeah. That's how oppression works.
Capitalism has taught us all that those who can't produce profit have no inherent worth whatsoever.
I don't think capitalism did it alone, but capitalism had a pretty big role there. Puritan ideals of working all the time had something to do with it too, I suspect, and with capitalism. A lot of things are interrelated here.
Since capitalism and class society itself is incapable of seeing the forest for the trees, those with a different mindset from Neurotypical people are not a demographic that can be sold to, and sometimes our neuroses make us harder to hire.
I'm not entirely sure what the issues mentioned here have to do with seeing the forest for the trees? Also, why do we think that neurominorities can't be sold to? Sure we can. Doesn't make the system any less broken, but yeah, we can be sold to. Just need to sell different things. Sensory-friendly food can be expensive. (Is different mindset an implication that those going along with mainstream culture must all be neurotypical? It's not true- lots of mainstream folk are neurodivergent, and plenty of radicals are neurotypical.)
Our neurological differences can lead to discrimination against us in hiring. Ableism is to blame for that bit. Cognitive accessibility and accessibility of physical spaces are both issues, and plenty of employers aren't willing to take the time to make things accessible. Or they don't want us, since they're scared of us/think we might be violent.
Instead of getting the help we need from our government, we are instead forced to live on the streets or in an oppressive home where we will be treated like farm animals.
Yeah, that's not OK. At all. Amanda Baggs has written some stuff about institutions that is really important. I think my response is to linkto it.
It's time for the neurodiverse, from the homeless schizophrenic man to the Star Trek loving Aspie Womyn to the surgeon with Tourette's syndrome, to realize that statism and capitalism produce hierarchies that are inherently operating against them.
I don't think that it's news to any of the people mentioned that there are hierarchies acting against them because of neurodivergence. Aspie tends to be an elitist term used by folks who want to distance themselves from the plain old autistic people, but not always, so I'm a little worried that ableism could come in there. Aspie elitism kills.
Kind of suspicious of anyone who thinks they have one source for all the -isms, because it tends to lead to people going “but that's not the real problem” when asked to confront the “symptom” -isms. Taking down one hierarchical system doesn't remove the hierarchies it created, after all, so those do need dealt with.
It's time for the Neurodiverse to get prepared to bash back against bigots and goons.
Um, what did you think the neurdiversity movement and the disability rights movement (at least, certain parts of it for certain neurodivergent members) have been doing this whole time?
It's time for all people who don't fit the upper-class, straight, neurotypical WASP mold (and them too if they want to join us) to rise up and create a better world for us all.
Nice goal. Do make sure to avoid the issue of people being told they are divisive for calling it out when other members of the movement are being oppressive in various ways. Acting oppressive is divisive. Defending oneself from oppression shouldn't be considered so. You didn't say that you were going to make that error, but it's common enough that I wanted to make sure.
We could start by trying to educate the masses about the neurodiverse, and how they are capable of living lives as good as anyone else.
Again, what do you think we've been doing this whole time? Help from another misunderstood community is great; just realize that we've been doing this and do have a pretty good idea of what we're doing.
The situation with police can only be solved like we've always known: direct action!
Direct action is great. Just remember that not everyone is capable of participating and that there are other things people can do. There are other things that can have effects. Educational efforts, including resource creating, can have effects. Direct action is one way. It's not the only way.
Together we can all make this world a nicer place for everyone.
I can go with that. Just don't do any of the problem things that wind up excluding groups and then blaming the group members for divisiveness when they defend themselves. That's kind of the opposite of what you said you wanted to do.

Thursday, August 8, 2013

Creating Cognitive Access

This is the part where I explain what the activity I couldn't do at the NCIE session on Universal Design was, why I couldn't do it, and how it could be made accessible to me. (It's a modification by providing additional structure to those who need it, essentially.)
My cognitive access isn't something people normally need to think about, since the way that stuff is generally done in classrooms that aren't using Universal Design is mostly accessible to me. I can take multiple choice tests. As long as what I need to write about is sufficiently specified that I can come up with a thing (or sufficiently broad that I can do "how does my Autistic Obsession of the moment relate to the topic," if the teacher knows about the interest,) I can do essays. I can do short-response questions. I can't take notes in lecture, but if I'm doing something else with my hands like sewing, drawing, or chainmail, I can remember what was said well enough that it works out anyways.
Ironically enough, it's the stuff that people add to make things "universally designed for learning" that starts getting me into trouble. Maybe I can't touch the thing we're supposed to touch because of a sensory issue. Maybe the place we're going will give me sensory overload (maybe the changes in my classmates behavior when they're out of their seats will be enough to overload me before we even start doing things!) But specifics. Specifics are what I need, so here's the specifics of one activity.
We were in groups by the tables we sat at. There were a bunch of objects on the table. We were supposed to choose one object (help!) and come up with a way to use it in a "grabber" activity to teach language arts.
There's actually a bunch of things there which make it harder for me. I can accommodate for a limited number of them myself, depending on which ones they are.
  • Group work means I'm spending extra energy dealing with people. I need to communicate with and come to agreements on everything else that needs to be decided, which is also energy. That means a reduction in the number of things I can be expected to accomplish.
    The way to fix this for me is to have someone else in the group give me a piece to do and then give me 100% authority over that piece. I still need to make that piece fit within the assignment guidelines for that piece, but within that what I say goes. That basically saves me from the "dealing with people to make sure what I'm doing is OK" part of the extra energy drain. It also avoids the anxiety I get over "is this a thing I can actually do?" that often prevents me from accomplishing anything in group projects.
    The other way to fix it is to have someone else in the group give me very specific instructions of exactly what I am doing. This fixes the "is this a thing I can actually do?" issue by having me know exactly what I am supposed to be doing.
    Basically, I need to be 100% in charge of how I fulfill the instructions or getting super-specific instructions, and anything in between is bad. That usually makes group work bad.
  • We have a bunch of objects to choose from, and no instructions that will help me choose.
    I either need the object chosen for me or I need instructions that will help me choose. In the case of this activity, the instructions helping me choose would probably come in the form of more specification on the other things I'm doing.
  • We don't know what part of "language arts" we're using it to teach. There's no way around this. You have to give me more specifics here. Am I teaching people to change verb tenses? Are we coming up with examples of verbs? Are we writing paragraphs? Are we writing stories? Are we learning about synonyms? What am I trying to teach? I only have that list because other people came up with those examples for me. I think that in the terminology of universal design, it adds up to "You have to tell me what the Essential Question is before I can do anything about creating a lesson plan."
  • We don't know how we're incorporating the object. If I know what I'm teaching and I know what object I'm using, I can figure this out. I can also figure out what object I'm using if I know what I want to use it for, which probably means I know what I'm teaching. (Seriously, how would I know what I'm using it for if I don't know what I'm teaching?)
  • The word "grabbers" got me stuck in a loop based on Julia Bascom's essay of the same name. That's not your fault, not even a little, but it did make it a lot harder for me to focus. Since universal means all, and all includes Autistic activists who could get stuck in that loop just like I did, I figured you should know. Even though the meaning is almost opposite: a student who needs to move is getting to grab a thing, it's almost like getting to grab back in the same way she said we never get to do (but still in a controlled fashion, and we probably are still doing it wrong because the way we interact with the things we touch to learn about them is still not the same, so it's still a reminder that we're flappers, not grabbers and it hurts.) In a classroom of small children, you're probably safe on that word, but training teachers, I'd be shocked if I were the only one to have that potential issue. I think it's similar to how at Autism Campus Inclusion we had a "crash space" instead of a "quiet room" because "quiet room" is what they call the seclusion rooms we get forced into. I don't really have an answer for this one, because I'm getting stuck in that same loop again.
The more energy I have, either because I started with more or because my group work needs are accommodated and therefore not being an energy drain, the more unspecifiedness I can deal with, so if I were working alone/in a group in a good way, knowing the exact thing I am teaching would probably be enough for me to do the activity. Working in a group just as an unstructured group, I need to know what I'm trying to teach and I should probably also know what object I am using to teach it.
I think this is a really good example of how conflicting access needs mean that universal design for classroom learning requires including some customizability in activity design. I don't mean letting the teacher customize it for their own convenience: I mean making it so the teachers and students have options built into the activities, including options of "give me fewer options."

Wednesday, August 7, 2013

Wheeling Around as an Outpatient Adult

Trigger Warning: Injury, presumptions of incompetence, hospitals

So, this is the fourth hospital story that wound up happening after I started writing about hospital stories. This is about my knee. I'm putting it up today because I want to link it in today's post for We Are Like Your Child and that means it needs to exist.
I play Ultimate. Depending on how much of my blog you read, you might have already known that.
I'm almost certainly dyspraxic. Given statistics on how many autistic people have some sort of movement issue, that's not exactly shocking.
I have really high pain tolerance. That's what the post on We Are Like Your Child is really about (That's a link.) It's a pretty common thing in autistic people: I remember this one parent saying I wasn't like their kid because their kid didn't realize their arm was broken. Yeah, um, I've had 3-6 broken bones in my life, none of which made it onto my medical records for the same reason your kid didn't know their arm was broken. 2-3 were in legs/feet, and I was walking around on them. One of them I directly stated wasn't broken because it "doesn't hurt enough to be broken." (That was my nose, not my leg.)
Those are the things that added up for me to have this story, I think.
I assume I did this playing Ultimate. Towards the end of the season, finals and such made participation decrease, so we wound up only having 7-9 women (well, people whose IDs for school say they are anyways- I'm androgyne.) For a sport that plays 7 people on the field at a time, that means we don't have a lot of subs, and sometimes we have none. I probably did this one of the times that we had none, which can become effectively the case when people get injured (only injured people get to sit when that happens.)
As for what I did, we're still not entirely sure. I may have focally fractured the knee. I may have some other kind of fractured the knee. I may have done something other than a tear to the cartilage- it was apparently a little wonky. I may have done a "heck if we know!" Well, we're pretty sure I did that, actually. Because whatever I did, I did it at least 2 months before I got it checked out. Kind of like the broken foot got walked on for a month before it got checked out. I recommend against doing that if you want people to be able to figure out what kind of injury you have, FYI. It confuses them, especially with injuries where you're expected to be unable to walk.
I went to the hospital. Since we weren't sure what I had and we were worried it may have been a meniscal tear, I got a wheelchair. (The hospital has a large enough pile of them that "one of the possible injuries is bad to walk on" gets you a chair. Smart of them.) People kept asking if I needed help, but as an outpatient adult with a sports injury (results of passing out doesn't get called sports injuries, even if you passed out playing sports, it seems) I got listened to when I said "No, I've got it." That was different from when I was in the hospital with the broken leg no one found. People were still really confused by the fact that I wanted to wheel myself, and they looked at me funny, but they listened when I said "Don't touch the chair; I've got it."
They didn't listen so much when I told them that pain scales were essentially useless for me. "I dunno, worse than the broken foot was just sitting there but not as bad as it was hiking? Where should a broken foot go on the scale, when I'm not doing anything on it?" Yeah. They didn't answer that. Or where a broken foot should go when I'm hiking on it. Or where a broken nose should go. Or, well, anything except that paretenintis is considered a 10. Which, um, size of blocks? Not all pain necessarily of same type? That's not enough for me to use their scale. It's just not. (Is "no pain"a 1 or a 0? WHY WOULD I BE HERE IF NO PAIN?!)
And they tried to record my "I DO NOT UNDERSTAND YOUR SCALE YOU NEED TO EXPLAIN IT WELL ENOUGH THAT I CAN USE IT NO THE FACIAL EXPRESSION THING DOESN'T HELP I CAN'T READ THOSE ARRRRGGGGHHHH YOU ARE NOT MAKING ANY EFFORT TO MAKE THIS COGNITIVELY ACCESSIBLE TO ME" as "no pain." No. I already told them two things it was between. I don't know how they could come up with no pain as a possible answer when they already knew it was worse than a broken foot. Broken feet hurt, folks. Just FYI. That's a thing. Broken bones hurting, I mean: that's kind of expected. So their "ugh just put down a number" reaction, which is completely unhelpful, was for a number that was kind of impossible.
Yeah. I think they expect everyone to be neurotypical. I also think that even if they never figured out exactly how I am neurodivergent (I'm Autistic, plus alexthymic and presumably dyspraxic, Autistic is the only one that's a cultural identity and therefore must be capitalized identity-first when referring to me,) they kind of got that I'm not neurotypical. I think neurotypical adults are at least capable of the "just make something up" thing. I sometimes can, if I have time to prepare for the fact that I'm just making something up and it's not actually important that I be accurate. Given the status doctors assign to these pain scales, I think it's important in context. (Seriously, doesn't "I'm using the wheelchair because I can't trust my own sensations of pain to tell me if I have broken bones or a meniscal tear or other major injuries, but walking hurts and that's a bad sign" kind of make it clear that these scales might not work right? But noooooo, "everyone" is able to do this, just give a number. WHAT PART OF I CAN'T DON'T THEY UNDERSTAND?!
I wasn't able to get them to just leave the thing blank with a note about "the patient is unable to use these" or something, unfortunately. Because I can't. But my mom was able to talk them into using an 8 instead of a "no pain" because she knows me and that if I'm consciously aware of the pain, it's got to be at least a 6 or 7 by typical standards. Which, um, I think is a sign of the scale being messed up? Just a bit? If my 6-7 is the same awareness of pain level as most folks 1-2? Yeah, that's a thing that needs changed. Not sure what it needs changed to, being not a doctor, but having "pain scales are cognitively inaccessible" or something like it as an option to get around the thing might be a good start...