Why nursing homes are hellish places

I just found something I wrote last year and thought it was worth posting. Warning: it's very dark!

Nursing homes are hellish places. I can’t speak for every nursing home in the world. I worked in one for 8 months, have been in a few other ones (training, working with clients who lived in nursing homes, etc.), and have been a support worker in various other settings (some of these things are also true in those settings). I think there’s a system in place that causes residents of nursing homes to often be in hellish situations–treated roughly, severely physically neglected, and denied kindness, respect, and freedom at a time in their lives that is likely to be very confusing and painful.

The people who appear to be responsible for this are the staff who work directly with the residents–the aides and charge nurses (LVNs). And these are the easiest people to blame when something bad happens, like a resident getting injured or sick due to neglect. Not only does it seem to be the aide or LVN’s fault, but they’re often from marginalized groups–poor, women, immigrants, POC–so it’s easier for higher ups to project something negative on them. They weren’t empathetic, they’re not kind, they were too lazy to take care of their resident. Due to language or cultural barriers, the aide may not be able to present themselves in the best light or make the best impression. It also is easier to fire or punish this person than to change the system.

However, what’s actually happening is that they’re put in an impossible situation.

They’re paid very little, and aside from the obvious stresses and difficulties of being poor, they may be doing things like picking up extra shifts–so, like, working 24 hours in a row. They might be trying to raise kids, work another job, or be in school at the same time so they may not be sleeping much or at all. Obviously, all this stuff affects how functional someone is and how fast/well they can work.

But there’s the other thing which is that too much work is assigned. Like, when I worked at a nursing home, the minimum required ratio at night was 1 aide to 24 residents. (Often it was like thirtysomething residents–but since that wasn’t actually legal I won’t talk about that.)

So, let’s say 12 of these people aren’t continent and are supposed to be changed every 2 hours, let’s say changing & cleaning someone takes 10 minutes. (Which I’m absolutely sure someone who doesn’t know anything about it would say is SO much longer than it really takes! You should be able to do it in 5 minutes! But also it’s against the law to have diapers and wipes out and visible on a table in someone’s room, they should be away in a drawer. But you should be able to do it in 5 minutes even though you might have to change the person’s bed and clothes. Well…I’m saying 10 minutes. Sorry.)

Anyway, doing that job already takes 2 hours. But also there’s helping people who put on their call light asking for help getting to the bathroom, or for a glass of water or something. So let’s say 3 people do that, the water takes 5 minutes. One person goes to the bathroom and back in 5 minutes. The other person goes to the bathroom and sits there for a long time–you’re supposed to stay with this person because they are a fall risk. (You are responsible if you leave them alone and they fall.) So the whole trip takes 15 minutes. Now we’re at 2 hours and 25 minutes.

Also, someone is confused and is getting out of bed, walking up and down the hall, and walking into other people’s rooms and touching them, which is scaring those people. You realize this is going on, so you go and convince that person to go back to bed. This takes 10 minutes. (Also, the LVN finally comes on the hall–you haven’t seen her all night–and wants to drug the person to keep them from getting up, which I’m pretty sure is illegal, and is definitely a horrible thing to do. But maybe you can see where this kind of decision is coming from.)

We are now at 2 hours and 35 minutes for what was supposed to be 2 hours of work, and our hypothetical self is working without ever taking a break or going to the bathroom or anything. Also, I forgot that you’re supposed to be filling out this computerized chart of what everyone ate and if anyone went to the bathroom, and if so, how much, etc. I don’t really remember how long this takes overall, but let’s say that you do it for 20 minutes during this “2 hour period.” So we’re basically at 3 hours. You are working at a speed that isn’t realistic; you’re also probably exhausted because of your life circumstances that I mentioned earlier; and you are 1 hour behind in your work.

Oh, by the way, pain: getting the nurse (who is stressed & busy) and trying to get her to give a pain pill to someone who is screaming in pain. And, by the way, emotional pain, just kidding. Like, someone is terrified, or miserable. That person is crying. You’d like to go and talk to them and keep them company. Just kidding, it’s 3 people. You’d like to go talk to these people. But you can’t talk to any of them, you don’t have time. But you go talk to one of them.

Then, you hear an alarm going off, indicating that someone who’s a fall risk is walking around, but you’re pretty sure it’s someone who, while she’s technically a fall risk, is always getting up and walking around by herself, but she never falls. So you keep talking to this person who’s upset. The other person falls and is seriously injured. Also, you’re in a lot of trouble.

Basically, the actual circumstances of the job encourage you to not care about people at all–to do a half assed job with the physical act of taking care of people (not cleaning them very well when you change them; just throwing random clothes on them; not brushing their teeth; transferring people in a very fast brusque way that is physically uncomfortable for them), never mind their actual preferences (you’ll help them get to the bathroom when YOU can carve out the time to do that) or God forbid their FEELINGS (how could you possibly have time to just sit and talk with someone?). The job is SET UP LIKE THIS because the workload is not realistic. Meanwhile, the higher ups expect you to get all your work done, AND the things they officially ask of you are like, to be gentle and polite and respect people’s preferences.

So if the aide doesn’t get their work done or is short with people, the higher ups are like, oh they’re a bad aide. (To be clear, I obviously don’t understand why someone would speak cruelly to an old person they’re taking care of. I do understand neglect and roughness in this context–the former of which especially can be really dangerous.)

And the higher ups maybe aren’t evil. I’ve never been one. But when I was an aide, the nurse manager was this very soft spoken lady who seemed very sweet and caring (btw she also came off kind of upper class and seemed to find the working class aides rude and uncaring and stuff) but like…at best, she just didn’t get it! And I’m guessing that the further away you get from the actual situation, the less you get it. And those are the people who set the job up.

my dream is a dead end

I'm kind of in a brain fog but I realized I've never said this straight out. I kind of want to say it to my Dream Job family just so they know they are the Dream Job and I will never leave, but I guess no one needs a big avalanche of Amanda feelings to fall on them. So I will say it here.

Plus I seriously do think this is a problem.

I am a career direct support worker. We could use a bunch of words for this, like aide, staff person, nursing assistant, personal care assistant, caregiver, etc. But for me I feel like the difference is whether your job is about an action or a person. Some jobs with people with disabilities (or kids or seniors) that are about action are like therapist, doctor, teacher, social worker, etc. You're supposed to be improving the person's abilities or solving some of their problems. Some people who do these jobs are doing great stuff. Some are not. But the job is focused on changing/doing something.

Support work is about a person or people. In a bad support job, like in an institution, you're supposed to control people. In a better support job, you just help a person with the things they need help with in the course of a day. It's not like you don't expect the person to ever change when you're doing support work, and in some cases you might hope that you affect the person's life positively, but the focus of the job isn't change. It's just doing what the person needs/wants.

I got interested in working with people with disabilities just because I like being around other people with disabilities. So I was always interested in doing support work, not being a teacher or therapist or something. It's fine if people are into being a teacher or therapist, but sometimes I feel sad because I feel like I'm one of the only support workers I know who has always wanted to be a support worker and wants to be a support worker forever.

It seems like for a lot of people, direct support work is like being a cashier. It's fine for someone to be a cashier if they're doing it as a short term thing but the kind of people I grew up with would not understand how someone could be a cashier for their whole life and not have a problem with it. Most young people I've known who do direct support work are either in school to do something else (usually an action-based job) or are doing it to "have an experience" or something. I think this is too bad.

Of course, I really don't think any job should be considered less valuable than other jobs. I don't like the idea that there are only a few jobs that people should want and everyone who doesn't have one of those jobs should be unhappy and spend their time trying to get one of the valuable jobs. But when it comes to this particular issue, I find it especially frustrating. On a philosophical level, why is it that people get paid less and get less respect for supporting someone, and get so much money and status for fixing someone? Practically, it's generally better for someone to have the same support person for a long time so they can have someone working for them who actually fits their needs and knows how they like to do things.

pink-collar jobs and autism

I take it really hard when I see someone defending the ability of A/autistic people to work or more generally "contribute to society" (not an idea I'm fond of) by saying things like:

*we can hyperfocus on something and do it really well.
*we might seem rude but if we work in a geeky environment, like if we are video game programmers, this won't matter! And if we don't our coworkers can learn to understand and forgive our rudeness because we do a good job.
*we may have more needs in some areas but we have fewer needs in other areas because we don't party/spend time on Facebook/care about fashion/play sports/something else stereotypically non-autistic. (It's too bad because the blog where I read this had a good point about "special needs" not always meaning "more needs" but I thought it wasn't helpful to rely on stereotypes this way.)
*we might have special interests in science or art that lead to us being amazingly skilled in those areas./We might have "splinter skills" or "savant skills."

People with and without autism say these things and they mean well. But I don't like it, not just because I am offended by stereotypes or something, but because it is personally threatening to me.

Every job I've ever held, and probably every job I've ever even applied for or been interested in, has been a pink-collar job.

I feel a little weird using the term pink-collar because it was coined for kind of a critical use--it refers to jobs usually done by women and the reason these jobs are in their own category is because they tend to be lower-paid than traditionally masculine jobs that have the same workload and educational requirements. But pink-collar is the only term I can find that easily covers the sort of jobs I am thinking of.

Some examples of pink-collar jobs are hairdressing, nursing, teaching, and waitressing. These jobs are a bit different from the kinds of jobs people are usually thinking of when they talk about how Autistic people can succeed in the workplace, because a lot of the job is about interacting with people other than coworkers. These don't all apply for every pink-collar job, but some of the requirements for a pink-collar job might be:

*treating people courteously and being friendly
*not hurting or abusing people
*being well-suited to working with kids
*remaining polite when someone gets mad at you
*being able to put someone else's well-being ahead of your own
*doing everything you can to fulfill someone's request

It is probably apparent that none of these qualities are stereotypically Autistic. I even see comments to that effect thrown around without much thought--that people with autism aren't good at customer service, or that we don't like kids. I'm not just trying to be all, "I'm good at customer service and I like kids, your argument is invalid!" but to point out that when even "positive" descriptions of Autistic people's work imply that we can't do certain kinds of work, it makes it harder for us to get jobs, or be open about our disability if we do get those jobs.

I know I'm not a super rare exception in a world of Autistic people who want to be electrical engineers, because I know lots of Autistic people, especially women, who want to work in special education. Special ed is a really good example of a field where, if you were applying for a job, you would want to convince your potential employer that you had all the qualities on that list. Which is to say that if your employer has been fed stereotypes of what Autistic people are like and what kind of work we can do, telling them you have autism could really hurt your chances of getting the job.

I know some people who will be open about their autism when applying for a job. I would never, ever do this. Right now I am looking for a job in healthcare and it scares me a lot to know that my disability label is associated with being violent, rude, and uncaring. I really love having this blog because I always wanted to write something that people liked and got something out of, but I regularly consider deleting it because it would be so easy for anyone who googles me to find out I have autism.

Basically what I'm trying to say is that even though my disability doesn't make me better at doing pink-collar jobs, I don't think it makes me worse at them, and I would like my suitability for them to be judged by who I am as a person instead of my disability label. I feel that even when people try to talk positively about what Autistic people can do in the workplace, they often ignore the fact that some Autistic people don't want to work in an office or in a stereotypically un-social field like science. So they don't defend us against some of the stereotypes about what we can and can't do, and sometimes they even reinforce those stereotypes by implying we are best at certain kinds of work.

I'd also like to point out that while my family was able to pay for me to attend college and I was (barely) able to finish my degree, a lot of people with autism don't have the option of the white-collar jobs we're supposed to be so good at. If you spend all your breath arguing that we can be engineers or architects, that doesn't help people who don't have the money or don't have the ability to get the education to do those kinds of jobs.

(NB that this post might not be relevant to people with autism who can't work, and some of it might be relevant to people with other disabilities like mood and psychotic disorders and intellectual disabilities.)

disability services are not accessible!

Hello. I'm a person who attends college. I'm also a disabled person, oh my gosh. I was hoping to talk to you today about the subject of, "DISABILITY SERVICES ARE NOT ACCESSIBLE."

Basically, the reason I found myself wanting to talk about this is because, you know, sometimes I take classes--being in college--and if I mention to my professor that I'm disabled, or...you know, either as like, "I'm having trouble with this because I have a disability that affects me in this way," or just in a way that, like, isn't related to academics but is just like, "I think I responded to this story this way because I'm disabled," I don't know...

So basically, you do this and then the professor will be like, "Well, like, if you need any accommodations, we should...you know, you should go to the disability services office and we'll get you some accommodations." They say this to be helpful. And, um, sometimes on the first day of class, you get the syllabus and if the professor is, like, a really sensitive professor they'll have written, like, "Students with disabilities, um, please contact the disability services office if you need accommodations." So, um, at this point, I completely give up on ever being able to get any kind of support from this professor as a disabled student, because disability services is so awful. I basically need disability services like I need a hole in the head--actually, I mean, not even as much.

So, what are my problems with disability services? It seems like they would be really great--they make college accessible for disabled students.

Um...okay. My first problem is...I got this pen so I can make little signs. Okay. My first problem is, "DOCUMENTATION." This means that...well, basically the way it works is that if you have a disability and you're in college and you want accommodations, you can't just say "I'm disabled," you have to bring in a diagnosis of your disability that is from the past three to five years.

So, um, this might seem like it makes sense--disabled people are always going to the doctor and getting diagnosed all the time! But, actually, um, it doesn't make that much sense because that's not actually true. Like, some people, they might be diagnosed with their disability when they're like ten and it's not a disability that changes, so, um, they don't ever get diagnosed with it again. So then they're like eighteen and they're in college and they're not eligible for accommodations because they don't have a recent enough diagnosis.

So, basically, I guess the reaction that a lot of people would have would be, "Well, so, get another diagnosis." Um...I guess, number one, is, like, yes, some people could do that but why is it necessary if it's a disability that doesn't normally change? And, number two, like, that actually takes a lot of time. It's kind of hard to go and do that when you're in college. And, number three, that actually takes a lot of money. My family has a lot of money--I can go and get another diagnosis if I'm told that I have to get one to have something that I need. Um, other people's families wouldn't be able to pay for that, so it's actually kind of a class bias in disability services.

Another thing I have about documentation is just that I don't necessarily understand the point of it in every case. Like, I think, hypothetically you could make some argument about how people are going to pretend to be disabled for like the benefits they get from it 'cause being disabled is extra fun. Like, I guess you could say someone is going to pretend to have some kind of kind of, like, chronic illness so they can have their own room or something like that. I don't know. I'm sure you can think of examples.

But a lot of the time there isn't really any arguable benefit for getting accommodations that you don't need. But...you know, if someone says they want to take a test in a different room for, I don't know, anxiety reasons, or, like, they're easily distracted, or, like, anything...how could taking a test in a different room, um, actually make any difference to someone who didn't actually need to do it? Like, if anyone goes and takes a test in a different room, it doesn't make them do better on the test unless that's actually something that they needed in the first place.

So, um, it basically bothers me because, as I'm going to go into, I can't help but feel that disability services almost has a hatred of disabled people because it's, like, this constant assumption that we must be lying and that we should do all this work to prove that we're not lying, which brings me to my second point which I'll just call, "ALL THIS WORK."

So, um, okay. Let's say I'm in class. I'm disabled and I realize that I would do better with a particular accommodation. Um...so let's say I tell someone that I need this accommodation. Whose responsibility is it that I get this accommodation and therefore, um, my schoolwork is just as accessible to me as a it is to non-disabled kids? Do you think that it would be my professor who is being paid to teach all the students, or do you think that it would be the disability services office who is also being paid to make college accessible to disabled students? Well, I'm going to read you something awesome which I found on the St. Petersburg College disability services website. I think it really just like sums up the whole attitude.

"Colleges and universities have no responsibility to identify or seek out students with disabilities. It is the student's responsibility to make his or her disability known to the proper individuals, to provide correct and current paperwork documenting the disability, and to request accommodation personally"--I really want to go and talk about this in a minute.

But anyway...yeah. It's our responsibility. All the time. I don't know if you know anything about being, um, disabled, but sometimes, like, it's really hard to do anything, and things that other people think of as being very normal, like, may be, like, pretty, really hard for you. So, it may, all the time, be kind of like going around and carrying, I don't know, a really, really giant heavy bag that no one else is carrying and you're expected to do everything the same as them anyway. So, I guess disability services felt that, like, one bag isn't enough, so they have to add a second bag of making you be the one who has to go through all of the effort to get accommodations instead of them just doing it--which it seems like would be their job, but no.

So, um, what do you have to do? You have to figure out what accommodation you need, you have to go to disability services--or maybe you go to your professor first, I don't know--um, you get your d--you get your documentation, which may take a lot of steps if you don't have documentation, but, um, you get your recent documentation, and you meet with your professor...and also, sometimes you have to keep doing this over and over again when you've already done it.

For example, I have a friend who had to take a test in a separate room, so every single time that she had a test in the class she had to bring a form to the professor for him to sign saying that it was okay for her to take a test in another room. So, basically because of the basic, like, cognitive problems that she had going on at the time she couldn't actually go to the professor and get him to sign the form. She couldn't remember or focus enough to do it. So she basically didn't get her accommodations because she was made to do all the work and she wasn't actually able to do it. So...it just doesn't really seem very fair I guess when someone is already dealing with things, and when someone, besides, is a student, and when someone else is doing this as their job, that they can't just do some things for you.

Um, a particular thing is when you're supposed to personally go to your professor and tell them about your disability and what accommodations you need. For some people this isn't really possible. In fact...yeah. For example, let's say someone has an anxiety disorder and they don't want to go talk to someone about it. Let's say someone has any kind of disability that is kind of stigmatized and they don't always like to go around telling people about it.

(break)

Sorry, my roommate was going to the bathroom and I didn't want that to be in the video.

Um yeah so basically there are various reasons that a person might not want to be able to go to a professor and start telling them about their disability, or that it might be very difficult for them to do so, but they're still required to do it. And this ties into what I was saying before--basically that disability services kind of seems to hate disabled students, because, um, even though things are already kind of hard, we're basically supposed to do all this extra work just to be treated the same.

Um, yeah, shit, what was my third thing?

I guess what I was going to say--I don't need to write it down. I'm probably wrong. I probably do need to write it down. But I was going to talk about, like, surprises. Basically disability services has this really cut-and-dry view of disability where you always know what you need. So, um, you know, if someone needs extra time to take a test, they'll always know that that's what they need. If someone needs...I don't know. You don't really need that many examples.

Basically, you know, someone's supposed to be able to know before they even start the semester what kind of accommodations they're going to need, and, you know there can't be any surprises. But...living with a disability, there are a lot of surprises. And one reason this is is just because of...I guess because of the general sort of complexity of, like...it's not always that you can't do something completely, but that for a lot of people it's that you can't do something sometimes or it's harder for you to do something.

So, this means that, like, you know, you might not ask for an accommodation on, like, a paper because you don't feel that you're...like, maybe you have, like, a reading disability, but you don't feel like you're so affected that you won't be able to work really hard and do this one paper. But then the paper comes around and you're like really super tired or, like, you have like three papers and it takes you so long to do this that you just can't do all of it, so you just don't do one of your papers. There's basically no way in hell that you could go at the last minute and be like, "Hey, can I have a disability accommodation? Because of my disability, I can't do all these papers at the same time." And...you know. That wouldn't be seen as real.

Something else, kind of an in-between issue, but something that's always personally bothered me is that, you know...if, for cognitive reasons, I cannot do something in class, like...I'm not even saying that I want to get away with that and have it not affect my grade. But I would appreciate it, I guess, if the professor doesn't decide that I don't care about their class and start being really nasty to me, which has happened; and, um, I don't know, I guess I wish that there was some way for disability services to actually be involved in issues when someone is either being discriminated against because of their disability or in which, like, professors are misunderstanding things that happened because of the person's disability--because if you're in a class with a professor that like really hates you it can make it really hard to succeed because you don't ever get any support or help from them.

Shit my roommate's dropping stuff and I know I'm gonna get really confused in a minute. I guess that was basically the whole point I was making, though. Basically, no room for clearing up misconceptions about disability--basically no room for anything relating to prejudice against disability--especially because disability services is extremely in the medical model of disability, in which everything is about the disabled person and basically it's the disabled person's fault that things don't work for them. Um, that's actually like, for me, I would kind of say that's what the whole thing is. That's what it feels like. The whole thing is about how it's the disabled person's fault and they should feel very very bad and the only way they can make up for causing such a problem is by doing all this extra work and getting their documentation together and shit.

What else did I have to say? Let's find out.

Shit--you know, it's really too bad, because I made another video about this and I said something so smart and I can't remember what it is.

So I guess you might be asking, what is something else that you could do, besides disability services--for example, if you are a professor, how could you help? Um...do it yourself?

Like...there's probably some things, I assume, are probably against the law. But there are other things that you can just do, and I know this because one time, for me, a professor let me take an exam in a separate room for emotional reasons, which I explained to him, which he accepted without me having any documentation because he was a really good person and he knew that there wasn't a reason that I would need that accommodation unless I actually needed it.

Um, there's things like that. There's things like trying to make your class universally accessible. What universal design means, basically, is that instead of making something so that only non-disabled people can access it and then, like, very long-sufferingly, like, making a tiny ramp for a disabled person to get in...you just make everything so as many people can do it as possible. So when you're designing your class, just think about different ways that people might need to access the information.

Or, you know, if someone's in class, just write on the syllabus if they're having trouble with something because of their disability, they can just talk to you. You don't need to have the whole part about "go to disability services," because you don't know what that means, so just say that they could talk to you, and then people will actually think that you get it, because you actually will.

Um, yeah, that's basically it. Sorry I can't remember the amazing thing that I said in my video that I made of this the other day.

(break)

Guess what? I just went back and looked at my other video and I found what I was going to say. I was going to say something about--wait--"BEING AN ADULT AND DEVELOPING GOOD SELF-ADVOCACY SKILLS."

So, this is something I have seen. When disability services people are being criticized for the fact that they basically make disabled students do all the work to get their services, they'll usually be like, "Well, we're actually teaching our students to be responsible, take initiative, and develop good self-advocacy skills." Well, this sounds nice, especially because a lot of the time disabled people are treated as being children, or treated as being incompetent and needing people to do everything for us, which obviously isn't a good thing. So, like, maybe first off it sounds kind of good when they're saying, "Oh, we're gonna make you do things for yourself." But actually, if you say that you're treating someone like an adult, but they're actually the only person who's being made to behave that way, then you're not really treating them equally.

Because, when you're in college, you aren't exactly being treated like an adult--like, no one is. You basically have someone kind of taking care of a lot of the details of your housing for you, a lot of the details of your eating, depending on the housing and eating decisions that you make, but you have a lot of people doing stuff for you.

And, if you're not disabled, your classes just are accessible to someone like you automatically and you don't have to do anything. So, if someone is disabled, and suddenly instead of doing it for them, you know, given the fact that they're a young adult and maybe they still need some support and can't do everything on their own, you say that they have to do it all on their own, because they need to get mature and get self-advocacy skills, you're actually holding them to a different standard from other students. Which is not fair, actually, so don't do it.

I hope everyone is reading Josh's tumblr posts today. I read one and went back to sleep and then there were MORE!

Buffy, Faith, and Camus
..ok sorry to go on about this but more Buffy thoughts.
..I mean I’m not saying Willow is an elitist, classist bitch

The initial crime that marks her out and separates her from the Scooby Gang is not so much accidental manslaughter but not displaying a socially normative emotional reaction to a traumatic event...I’m sure the well meant concern and flapping from the Scoobies, and having Buffy’s deeply empathic grief thrust at her pours considerable salt on this alienation. Perhaps if they’d not made a value judgement on Faith’s psyche, she wouldn’t have become what- from that moment- they feared she may well be?

A++

the calmness checklist of a lot of people at my school

I don't want to call this "non-ASD privilege" or anything. There's already a checklist sort of like that. But I have been thinking and observing my particular situation, which is to say: grew up being stigmatized as disabled in my family, have always kind of known there is shit wrong that I have to manage (although I haven't thought about it as concretely as I do now), but have pretty much done the things that other kids with a lot of class privilege do when they are growing up. I haven't gone to a segregated school, I currently attend college, I don't see any reason to think that I will ever be in any kind of (good or bad) supported employment as people with more severe DD may be. And I don't think I will ever be in any danger of being forced to live in an institution, no matter what.

A little more than a year ago I made a YouTube video where I compared myself to a wheelchair user who when asked to describe her daily journey describes a series of places that any non-disabled person might go to. That is--the places she could go might be highly limited by which spaces are wheelchair accessible. A person can move through a bunch of places and situations that seem "normal" and are not identified as being for disabled people, but actually the person might be disabled and be quite affected in the number of options she has.

Although I think I have a ton of privilege just because I haven't always felt this trapped, I feel really trapped now (senior year). And I am surrounded by people who don't have disabilities and don't feel the same intense need to start planning their futures now for the sake of being safe. But on the surface we don't look all that different.

In fact I like my college partly because it is a very stoner/experimental/hipster/hippie/radical environment. I don't identify as any of those things, but the social environment is very comfortable for me because there's so much diversity of acceptable behavior. But this very social environment is something that really pisses me off right now. I mean, a lot of the people at my school who behave "unacceptably" do so because they think it's an interesting thing to do. They can quit any time and they don't have to structure their lives around it. Similarly, when they don't do things they are supposed to do, this is called relaxing and not worrying too much and giving themselves time. There are some things that I just can't do.

In my class where we work with kids and teenagers with DDs, we had some discussion about what a developmental delay is, and then what executive dysfunction/poor central coherence look like in people with ASD. This often degenerates into a good-humored discussion about how many people enter college and don't even know how to do their laundry, and how a bunch of guys still rely on their girlfriends to schedule everything for them, and how many friends of the person speaking don't even understand how to cook a meal. As a person who is really worried about the prospect of cooking meals and scheduling things for myself and completely wearing myself down to the bone because of how much emotional effort it takes, I don't think this is funny. And this article makes me spitting mad.

So, without further ado:

THE CALMNESS CHECKLIST OF A LOT OF PEOPLE AT MY SCHOOL
(this is very personal and kind of mean, and probably would not hold up in court)

1. I can ask for an extension without having to feel like a failure.
2. If I don't graduate on time, that's cool.
3. I can talk in class without feeling guilty for taking up people's time with my bad talking. I can even get off topic or say things that are totally stupid.
4. I can schedule meetings with my professors when I think I might be doing badly in class, because I don't worry that they will think I'm lazy or don't care about the class because of how I come off. I don't only schedule meetings in the event of being in danger of failing the class.
5. I can schedule meetings with professors just because I like them and want to become friendly with them, because I think that they'll like me too.

6. If someone expresses romantic interest in me, I don't worry how they will find out or if I should tell them.
7. If someone expresses romantic interest in me, I don't just end up avoiding them altogether because I don't want to deal with figuring out #6.
8. If someone expresses romantic interest in me, I can be pretty sure that it's not because they are academically interested in my lack of autism.

9. I'm never sitting in a class where everyone is ASD except me and someone says, "I'm really interested in not-Autistic-ness, it's so fascinating."
10. If I tell someone I'm not Autistic, they never immediately recommend that I read a book about a character who isn't Autistic written by an author who is Autistic.
11. I never have to try to figure out how to give feedback in a writing workshop to someone's story about how depressing, confusing, and annoying their sibling is because their sibling doesn't have autism.
12. Actually, I just never have to ever sit in any class where students or professors say anything about how much sympathy family members deserve for living with someone who doesn't have a disability.
13. But if someone ever did say something insulting or dehumanizing about people without disabilities, I could just say I was offended and explain why. I wouldn't have to feel like people would think I was overreacting. And I definitely wouldn't have to feel like people might be thinking, "Wow, I guess people without autism have trouble understanding other people's points of view." Or, "I guess people without autism don't understand humor." Or, "I guess people without autism have to take over the conversation and make it all about their own interests just because someone made a little comment about something related."

14. I can intentionally vomit on the steps of the library, and that's just how I am, not a sign of how I don't understand social norms.
15. I can also wear pants with holes in them and no underwear so people can see my junk (same person). Again, this isn't because I don't understand the appropriate way to dress, it's just a personal choice.
16. I can never shower and it's not because I have problems with personal care. I just don't feel like it.
17. Being out of it or overfocusing on weird things or dissociating is so fun that I actually pay people for substances that can make me do those things.
18. When I'm in a less accepting environment I can start showering and stop throwing up on the library and showing my junk to everyone and smoking so much weed, and get a regular job.

19. I don't have to worry when I am in class and the professor is sitting across from me and I'm afraid he will be making eye contact and expecting me to say something and I won't react fast enough or I won't make the right expressions.

20. When I'm at home I don't do my laundry and I don't feel bad about it. My mom doesn't tell me that I need to practice doing laundry or I won't be able to live on my own. I don't feel bad that my parents make my doctors' appointments because I'm still young and I don't have to prove that I am normal and independent.
21. When I mess up tasks like cooking, packing for trips, and cleaning my room, or get them done late, my mom doesn't tell me that I might never be able to live on my own successfully because of this.
22. My parents don't make me balance a checkbook when no one else does because I need to learn to be organized and responsible.
23. My mom doesn't cry about me when I am not feeling good. My mom doesn't cry and make me feel guilty about how she was upset by bad things that happened to me in the past. If I am feeling upset, I can just tell my parents without feeling guilty.
24. As a young teenager, I didn't wish I had a sibling so my parents could have a kid who would actually do things besides make them upset.

25. When I am interacting with service people, for example when I am eating at the dining hall, I don't worry about whether I am inconveniencing them. I don't pay much attention to what they expect from me (for example if they have a policy of checking inside take-out boxes, I will always wait to be asked by the cashier; I will never open my take-out box knowing it will be quicker to do that; and I will often bury my meal card deep in my pocket and stand there rooting in my pocket as the cashier waits and a line of people grows behind me). [a/n: yes I am the cashier in question :)] I don't worry about whether other people can understand my speech. After all, if other people can't understand what I'm saying, or are offended or inconvenienced by my behavior, it doesn't really reflect on me that much. I'm observant because I believe I am and I have good social skills because I believe I do and people should understand what I'm saying because I believe they can.

25. I might just move to any city I want if I feel like it. I am not worried about how I will get a job. Maybe my parents will send me money, that's cool. I'll figure something out.
26. It's easy to make friends. I know people will like me so I just talk to anyone. I just ramble to people about whatever I'm interested in.
27. I haven't had a paid job in a while. Wait, should I be worried about that? I'm really busy with schoolwork and friends and performance art. Of course I can get a job when I want one.
28. No matter how old I was the first time I got a paid job, I didn't feel ashamed that it had taken me so long to do what I believed a teenager was supposed to accomplish.
29. I can take time off from school if I want. I can go to grad school for fun.
30. Whatever I'm doing, I am okay.

Having written this, I've removed the word privilege. It's very scary for me to have to think about how hard it sometimes is for me to take care of myself and how much I have to plan for the future (always living with a friend, probably; I don't think living alone is safe for me). And it makes me angry how much I feel trained to think of myself as a burden.

However, I was talking to a friend my age who also is disabled and is class/financially privileged. And we ended up thinking it was maybe kind of good that we felt way too self-conscious about being disabled to just noodle around and not worry and be failures to launch. (On the other hand, watch all those people eventually launch and be way more successful than me because they're so confident in the knowledge that they're normal and people like them. Well, we'll see. I have a little time yet.)