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.

Two people are late but the bus is fine

Even though the San Francisco public transit system is very extensive compared to other cities, I'm having a lot of trouble using it. When I lived in Cincinnati, I was rarely late, but since moving to San Francisco I have been chronically late to work. I almost was fired from one of my early jobs here, and the only reason it hasn't been a bigger problem in the Dream Job is that we're on a very loose schedule. I am nearly always late.

Aside from the problems wheelchair users face on SF buses and trains (which I'm obviously pretty familiar with), the transit system is inaccessible to me as someone with cognitive disabilities, not only because buses and trains don't come at predictable times, but because they don't even have a goal of coming at predictable times. The Muni schedule isn't an actual schedule with times, but just a promise that the 24 Divisadero bus will come every 10 minutes in the afternoon, every 15 minutes in the evening, and so on.

The biggest problem with this is making connections. If my other bus drops me off to catch the 24, I could catch the 24 right away, or I could have 10 minutes to wait. It's hard to plan my commute when I don't know if my transfer will take 0 or 10 minutes. Obvously, in real life the bus doesn't always adhere to the schedule--I could be pleasantly surprised by two 24 buses arriving only minutes apart, or stuck waiting for 15 or 20 or 25 minutes.

This is a huge problem for me as an Autistic person. I can't respond quickly to surprises and changes, or make snap decisions. I mean it's theoretically possible and I try really hard to be more flexible, but there's only so much I can do about the way my brain is. It would be so great to be able to leave for work at the same time every day and know when I would arrive, or to be able to rely on a Google Maps estimate. Instead, after living and working in the same two neighborhoods for almost three years, I am still almost paralyzed by confusion on the way to work.

For example, what if I arrive at the 24 bus stop, and the LED sign says the bus isn't coming for 15 minutes? Now I'll probably be late. I consider walking to Castro Station and trying to catch the 35 bus, because it might happen to come sooner. But sometimes the LED sign is wrong, so as I'm walking along in between bus stops, I see the 24 bus coming by after all. I usually can't process this information fast enough to start running after the bus or trying to get the driver's attention, so I miss the bus and feel stupid because if I had just stayed where I was, I would have caught it and I wouldn't be late.

Or, I am waiting at the 24 bus stop and the sign says 7 minutes, but it suddenly changes to 14 minutes. I'm wondering if the sign is malfunctioning, if the bus is briefly delayed and the sign will go back to 7 minutes when the bus starts again, or if I should try to walk to Castro Station to catch the 35. I sit and wait for a minute because I'm overwhelmed, and the sign goes up to 20 minutes. I decide to walk to Castro Station and when I am just a block away, I see the 35 going by. If I had just made my decision faster instead of sitting at the bus stop, I would have arrived in time to catch the 35.

Or, I have written down the ID number of the Castro Station stop, so I call the transit information number on my phone, and it tells me when the 35 is supposedly coming--a long time from now. I frantically study the bus map for another option, and decide to walk a few blocks and catch the J train, since I see it on the map. When I get there, there aren't even any train tracks and I realize that in my anxiety, I forgot that the J is an underground train in this part of the city.

I feel bad because if I was a little smarter or tried a little harder these things wouldn't happen, but I think we have to admit that our ratio of supercrippery to exhausted hopelessness is maybe set in stone by the mid-twenties. I don't know how much better I'm going to get at handling constant surprises and setbacks; and even though it's usually not a problem at work, I know every time I arrive late, and I feel stupid that I can't succeed at such a simple goal.

The public transit in Cincinnati is pretty spare and slow. If I could have driven to my job, it would have taken a half hour; instead, it took almost two hours because I rode two 35-minute buses with a 30-minute wait between them, and had to walk a little bit to get to work. People I knew acted like this was a shocking and awful commute, but I was almost always on time, and I seriously miss having control over this. It's so frustrating that in San Francisco, I can't just choose to be on time, and nothing seems to work.

The lack of a real schedule annoys me not just because it is inaccessible to me personally, but because it's such a transparent attempt to avoid being held accountable for not being on time. Yes, people who ride Muni know that it is late a lot, but we can't really be aware of how much. If a bus that's supposed to come at 8:00 comes at 8:10, everyone will know the bus is 10 minutes late. But if there's no set time for the bus to arrive, then people won't notice it's late unless they either know when the previous bus arrived, or if they got to the bus stop more than 10 minutes ago.

Last month Muni decided to change the names of a lot of buses, for God knows what reason. I guess it seemed cooler than fixing their actual problems. My favorite bus, the 71, was changed to the 7; the 71L, which has the same route but makes fewer stops, was renamed the 7R. The 16X, a bus with a totally different route, was renamed the 7X, and we can all guess whose dumb ass got on it by accident and ended up wandering around downtown in utter confusion, trying to figure out how to get where I was trying to go. Otherwise no improvements, but I hope they had fun painting the new names on the bus stops (covering up the stop ID numbers half the time and making it harder to call transit information when the LED sign is broken or absent).

We know I'm Autistic and will tolerate anything for public transit--the relaxing sight of a dog's urine slowly dripping along the bus floor and onto some beautiful Doc Martens; the excitement when an old man starts beating up five people because they made fun of his boombox; or the thrill of being offered whisky by a startup intern who looks like he's in third grade. Constant stress, and inconveniencing people who have done a lot for me, is no big deal compared to these treasured moments. But straight talk: if I had the motor skills to ride a bike or a skateboard, I'd be on it like white on rice.

The Sublime Mysteries of Belugitude

I am working on a blog and possible video series (the video part is probably a lie) about my adventures with my boss Anna. It is called Belugaville because I like to pretend that Anna and I are beluga whales. I mostly just wanted to make blogs and videos about it because Anna and I are so adorable and have so much fun, but I was also hoping it could have an educational component so people could see that having a disability doesn't prevent you from kicking back and eating some scrambled eggs.

(A drawing of a floating beluga feeding eggs to a beluga in a wheelchair.)

Anyway, I wrote a long and extremely verbose description of Anna's disabilities and my disabilities, which I'm sure would just serve to distract people from how adorable our blog is going to be, so I'm posting it here in case people who love words think it is interesting.

ANNA'S DISABILITIES

 (A photo of Anna sitting on the couch and looking very solemnly at the Christmas tree.)

Anna has a rare developmental disability called Aicardi Syndrome. People ask what her disability is and then are surprised when it doesn't answer their questions, but this shouldn't really be surprising. Even if someone has a common disability like Down Syndrome or autism, the label doesn't tell you much.

I don't mean this in a politically correct way like disabilities don't matter, but most developmental disabilities affect a lot of things, so it's more like someone has a lot of different disabilities instead of just one, and all the disabilities could be at different levels of severity. I think it's easier to just talk about what a person needs help with.

"What does Anna need help with?" Anna needs help with eating, walking, and most other physical tasks. You could also say that she needs help making decisions, but it's more that she is not able to communicate what she wants very easily. She can't talk, write, or use sign language.

You can learn a lot about a person by watching their expressions and what they do, but this is a little different with Anna. She often gets stuck and takes a long time to move somewhere she wants to go, or grab something she wants. I think she also is very much in the present and is focused on holding and looking at things instead of using movement to communicate an idea. In other ways, she can be detached from the present--she sometimes looks serious while something is happening, but smiles and laughs when the event is mentioned later, giving the impression that she really liked it. So it's hard to figure out what Anna likes, even by watching her expressions and behavior.

One of the very confusing things about Anna is that she sends mixed signals. For example, she always pushes food away at first, but if you make her eat a bite, she might like it. When she likes it, she sometimes grabs your hand and brings the food to her mouth. But other times, she continues pushing her favorite foods away even though she is smiling, and if you make her eat more of them, she laughs and dances. I think Anna is kind of a troll sometimes. If she looks serious, clamps her mouth shut, and pushes the food away really hard, then we know that she truly doesn't want it.

This means that Anna's parents and assistants have to play a guessing game to figure out what she wants. We have to pay attention to her behavior, but also realize that her behavior doesn't always tell the whole story. We have to remember what she liked and didn't like in the past, so we can guess what she might like in the future.

What isn't clear in my description is that Anna has a very big personality and strong preferences, even though she is hard to understand. That is one of the sublime mysteries of belugitude. We do know a lot about her. Her favorite foods are yellow curry, guacamole, grilled cheese, and scrambled eggs. She likes music, dancing, parties, applause, and restaurants. She likes going out, but loves coming home and curling up on the couch or in her tent bed.

Anna sleeps in a tent because she has seizures, which I forgot to mention. When she was growing up, she used to have a lot more seizures and she could have them at any time. She had to wear a helmet everywhere and she didn't like that. When she was a teenager, she had so many seizures that she stopped being able to walk by herself and started having more trouble with a lot of things.

When Anna got older, she stopped having as many seizures. They also started to only happen when she was sleeping, which is great because she can't hit her head on anything in the tent or on the couch. She is happy that she doesn't have to wear a helmet anymore. After Anna finished school and didn't have to get up in the morning, it turned out that she likes to sleep until early afternoon. Now that she's able to sleep as much as she wants, she has even fewer seizures. I didn't know Anna when she was having so many seizures, but her parents say that she walks better now and is more clear headed and energetic.

Objectively, Anna still has a lot of seizures; she has a few a week. She takes a lot of seizure medications and she has a magnet in her chest that sends electricity to her brain to try and control the seizures, so she is basically a cyborg. One of the biggest problems for Anna is that when she has a seizure, she can't fall back to sleep for a day or two. She ends up having a hard time because she is so tired. We usually stick to our usual routine as much as possible, even though she can't participate as much when she is tired.

We do a lot of things. We go to a group for people with disabilities who are learning to use communication devices; we go swimming; and we go to drama classes for disabled people that are offered by the City College of San Francisco. We hang out with Anna's friends and their assistants, with Anna's parents, or by ourselves. Last year we went twice to the Frozen Sing-Along at the Castro Theater and Anna was very excited by the scenes with the trolls, probably because she is always trolling and could relate to them. We also went on Anna's favorite public access TV show, Dance Party, which is just what it sounds like. Anna also likes to spend time in her neighborhood, visiting her favorite stores and being greeted by her adoring public.

People ask if Anna can understand what they're saying, and if she understands what's going on. It's probably clear by now that we don't really know the answer to that. In special education, it's considered best practice to make "the least dangerous assumption." An example of a dangerous assumption would be if we all decided that Anna couldn't understand anything, so we just didn't talk to her at all, and we talked about scary and upsetting things in front of her without considering how she would feel about it.

This is done to a lot of people who can't talk. Sometimes, people start talking or typing when they're older and they reveal how horrible it was when people treated them like they weren't there. Even if Anna doesn't understand anything, she still probably wants people to pay attention to her and interact with her. But I don't think that's true; I think she understands a lot.

I don't know if it is like this, but I usually assume that Anna can understand things as much as I can when I'm drunk. So I assume that she might enjoy hearing about things but she might miss some of the details, or sometimes she might be tuned out and thinking about something else, which is fine. I love talking, so I just ramble to her about everything I can think of. Poor Anna.

AMANDA'S DISABILITIES

(A photo of Amanda sitting with a beagle standing on her lap.)

I have a very common disability, autism. Before I worked for Anna, I rarely told anyone I worked for that I'm Autistic. A lot of people stereotype Autistic people as being violent or self-centered, so I knew it would make it harder for me to get and keep a job. This is especially true because I'm not in a stereotypically Autistic line of work, like computer programming. And since I work with quote unquote "vulnerable populations," being perceived as violent, or even selfish, would be even more of a problem than in other jobs.

Since I was hiding my disability, I had two consistent problems in all my jobs:

1. I couldn't get accommodations or ask for help with anything, and I couldn't even explain why I made mistakes without revealing my disability, so I had to hide them or lie about what happened.

2. I couldn't let my employers or coworkers get to know me. I get stressed very easily, so I don't do very much compared to most people. I don't go on trips or go to parties very much, even though I like them, and I do most of my socializing on the Internet. Without an explanation, my lifestyle can seem strange since I don't have kids or a lot of other responsibilities. Also, most of my best friends are disabled and a lot of them are involved in disability rights; this is a part of my life that is also hard to talk about if I can't say I am disabled. Obviously, it made it harder to do my job when I had to stay detached from other people. It's hard for anyone to work with strangers, and I'm especially shy with strangers.

When Anna's parents had interviewed me to work for her, they researched me and found my blog about disability. I was really scared when they told me that, but reading my blog made them want to hire me. I had written a lot about my previous jobs and how I didn't want to boss around my clients or ignore them, which I felt pressured to do in those jobs.

Even though I talked about being Autistic on my blog, I couldn't believe that Anna's parents really knew I was Autistic, because they didn't seem to worry about it at all. Eventually I realized that they did know. We all spend a lot of time together so now I am very comfortable with them and tell them everything. I'm not very professional, but I find it hard to communicate with people who are not my friends and family, so I'm glad that Anna and her parents feel like both of those things to me.

I have been working for Anna for two years and plan to stay with her forever. Even though Anna is the best person ever, her parents are the ones who make this the best job ever because they accept and support me. I rarely feel scared to explain problems to them and I always have time and space to do it.

Sometimes people are confused by my lack of ambition. People who only know me on a superficial level don't understand why other jobs have always slowly fallen apart for me. I can't keep it going in the long term if I can't get any help and can't form connections with people. Also, I have some times when I'm not doing great mentally. Working with Anna is not just fun, it's also predictable enough that I can still do my job when I'm not firing on all cylinders.

I need help with a lot of things, like long term plans, making decisions, using the phone, and communicating in general. It might seem weird that I need help communicating, because I can communicate with people I'm close with, and I can communicate about simple things with people I don't know well--like ordering at a restaurant. What I can't do is communicate about complex things with people I don't know well. Actually, it doesn't have to be that complex--if I was ordering at a restaurant and they ran out of something I wanted, or just asked me a question I wasn't expecting, things could get screwed up. I honestly like people a lot, but I hate when waiters and baristas tell jokes or try to be friendly before I finished ordering, because then I can't focus on communicating clearly to them.

Part of the problem is that my speech can be hard to understand, but I guess the main problems have to do with my ability to make decisions and remember things and react to new information, and also that the way I talk is naturally somewhat idiosyncratic and disjointed. If I know someone better our conversations are longer so there's more time for me to deal with things, and we also have more common knowledge so I don't need to be super precise for them to understand me. I also feel more comfortable and less like I am inconveniencing them because I don't communicate quickly and precisely enough.

A lot of people who know me would probably think that I communicate very quickly and precisely. In certain contexts and about certain subjects, this is true. In other situations it's not true at all--another of the sublime mysteries of belugitude, I guess. One part is that you can talk a lot without actually saying anything and that is something I excel at. Meanwhile, Anna's dad often has to call and make doctor's appointments for me because it's too hard for me to remember all the relevant information while also speaking clearly, and I tend to agree with anything that's suggested to me in order to keep from stalling the conversation. It's especially hard on the phone because if I am thinking too long, they might hang up.

Anyway, that is what's wrong with Anna and me, pretty much.

Disabilarchy?

I've noticed that some portrayals of the disability experience in fiction are pretty much diametrically opposed to the disability experience in real life.

In fiction:

• Employers have no choice but to hire disabled applicants even when they are not qualified, because they could be sued for not hiring a disabled person
• Disabled people's work is disproportionately rewarded even when it's bad, because people feel sorry for us or are just positively biased toward us
• It's easy and profitable to fake a disability in order to get disability benefits from the government
• Professors have to provide ridiculous accommodations for students who say they are disabled, when in fact those students are lazy or not smart enough to be in college
• People with mental disabilities are the perpetrators of violent crimes
• A "black transgender disabled lesbian" has a big advantage in life because people want to give her jobs and other opportunities

In reality:

• Employers often do not want to hire disabled applicants because of their mistaken ideas about what our disability means.  It's easy for them to discriminate against us because they can just say "We didn't think you'd be a good fit for the job" or something like that.  They also can fire someone for being disabled if they just pretend to fire them for a different reason.  Even if an employer admits that they are not hiring someone or firing them because they are disabled, suing someone is expensive.
• Some disabled people are legally allowed to be paid a fraction of minimum wage if their employer says they cannot work as fast as a non-disabled person. For example, Goodwill does this, and plenty of people think it is acceptable. (Articles about Goodwill: here and here, and many comments asserting that disabled people are not good enough workers to deserve minimum wage: here, here, and here; and saying that people who need accommodations do not deserve minimum wage, even though accommodations are their legal right: here).
• In the US and the UK, it is a lot of work to even apply for disability benefits (more work than some disabled people can do); many disabled people are denied benefits for stupid reasons; and the benefits are not very much.  You also then can't save money, or you will lose your benefits.
• It's a lot of work to get accommodations in college (again, more work than some disabled people can do; my post about that here); and even if you do all the work to get accommodations, a professor might refuse to give them to you if they feel like it.  This happened to someone I knew whose professor thought it was stupid for her to get a note-taker, so he dragged his feet on arranging it and then tried to arrange it in a way that revealed the disabled student's identity, which he was not allowed to do.  Many disabled students in college are struggling due to lack of support, and about half the (smart, hardworking) disabled kids I met in college had to drop out.  Still, some people imagine that disabled students are coasting through life on a fluffy cloud of accommodations (here).
• People with mental disabilities are disproportionately the victims of violent crimes and society often makes excuses for the criminals, causing this type of crime to seem more and more acceptable for potential murderers and abusers.
• A black transgender disabled lesbian has to deal with racism, transphobia, ableism, homophobia, and sexism; the intersections thereof; and feeling like an outsider even in minority communities.  Plus, she's constantly invoked as a joke to show how bad "political correctness" supposedly is.

So, you have to ask: why is being disabled portrayed as being so easy and coming with so many opportunities, when in fact it comes with a lot of disadvantages?  Watching TV (and hearing some people talk), you would think that we live in a society ruled by disabled people.

About Me

I am always trying to work on the “about this blog” page because, since I am not a famous writer or performer, it’s just about the only opportunity I have to describe myself.  When I was 15 I was really into personal websites so I can attest that I’m not the only person who needs to make a whole page on the Internet just so I can tell you my favorite color of lipstick (Violet Frenzy) and my favorite Disney Channel Original Movie (obviously Mom’s Got a Date With a Vampire).

However, as I’ve gotten older I have less and less to say about myself.  Don’t mistake that for an increase in humility.  I just can’t do as much now.

When I was in college, I would have described myself this way: “I’m studying creative writing and Latin. I’m a cashier and I take classes where my teachers and classmates insult me so I can volunteer with disabled kids.  I write fiction and pop music, and I also make little art projects, like I take pictures of myself pretending to be a ghost leaving my body.  And I write a blog about disability issues.”

Now it’s more like: “I work as an aide for a fantastic person.  Occasionally I write in my blog and every few months I work on music a little bit.”

My phrasing has misled at least one friend into thinking that working for Anna is very difficult and this is why I don’t do anything else.  I don’t think working for Anna is hard and it’s easier, better for me, and more meaningful than most things I was required to do when I was in college.  But my life was much more physically circumscribed when I was in college and a lot of things were provided for me.  I was already having trouble with daily living things when I was in college, but there were a lot less of them.

The amount of work that goes into getting ready in the morning, traveling to and from my job, getting ready for bed, and trying to eat and shower an appropriate amount takes up at least as much of my cognitive ability as my job does.  I also can’t let myself space out at work because it would affect someone, which wasn’t really the case with my college classes.  I’m glad that I spend my days somewhere where my presence actually matters--one of the things that made me so angry and depressed in college was that I was required to exhaust myself doing things that didn’t immediately benefit anyone.  But having to be alert means that my job drains me of energy much faster than my classes did.

If I don’t have to be at work and I’m not trying to deal with eating or hygiene, I’m trying to force myself to focus on getting stuff done around the house so I won’t make life harder for my roommates by not doing my chores (which are already disproportionately tiny compared to theirs).  If I’m not trying to force myself to do that stuff, I definitely don’t have it in me to do anything but lie down and watch or read something in pieces with spacing breaks.  If a friend asks me to hang out, that’s usually good because I can let them do the focusing and make the decisions.  I can enjoy what we’re doing.  But when it comes to stuff where I have to focus--like writing or working on music--it never seems as important as lying down and trying to forget how much I hate moving and thinking.

I can tweak this to sound better or worse, right?  Oh the existential anguish of having to drag myself to the shower every four days.  I don’t need to be an PCA/writer/musician like I expected to be when I was younger.  I do some stuff I like and I feel like my job is meaningful and I do think that’s the most important thing.  Sometimes I still get upset because I feel like it’s unfair that I don’t feel better or get to worry about things less or do more of the stuff I’d like to do.

I came across the blog Dealing with Dysautonomia, which is really good.  Maddy writes about how she became sick when she was 14, and how she struggled with her identity when she couldn’t do the activities she used to identify herself with.  I don’t know Maddy and don't want to quote her without asking, so here is the post I'm talking about.

Sometimes I sit down and try to make plans for organizing my life in a way that would magically enable me to write and play music.  I really hope I figure it out, but the answer might be that there’s no figuring around not being able to do as much as I expected.

The point is I may have to just tell you my favorite color of lipstick is Violet Frenzy and leave it at that.

I’m Autistic.  I am 25 and live in San Francisco, in the United States.  Here’s the blog directory which is not up to date--the reason I made it was because I used to write about a lot of non-disability-related things on the blog and I wanted the disability things to be easier to find.  Here’s me and Jonathan Wilson being really cool.

(A young white woman, with a stuffed elephant on her shoulder, is wearing a shirt that says “?$#@&*!! YEAH MAN!")

Services

Liebjabberings was curious about what kind of services I'm thinking about when I complain about people like me not getting services. I actually have never thought about this much because I know I won't ever get them, but I got interested in thinking about what they would look like.

A main thing I'd need is direction to work on the non-urgent things I mentioned in a post a few months ago. In that post, I discussed how I'm usually able to get myself to get up, commute, work, eat, and occasionally shower, but it's too hard to do anything else and that creates problems for me.

So for me, that could be meeting with a support worker and the worker could list things most people do, like getting haircuts, regularly going to the doctor, etc. and I could say if that's something I want. I could also add other goals that aren't on the list, like getting new curtains (random example).

If there are things that could be done with the worker in the short term the worker could just walk me through those things and/or do them for me. It might not be realistic for the person to actually go with me to get new curtains and stuff, so I think the way they would help me with something that takes place over multiple days would be to schedule with me exactly when I would do it and maybe check in with me by text to see if I'm able to do it.

A big problem for me is dealing with food. I usually don't prepare food for myself because it's too much work, especially when I'm feeling foggy and tired which I usually am at night. The main reason I have trouble paying my rent is because I don't really have enough money to get takeout or junk food that much, but I do it a lot.

I think there are a few possible ways this could be dealt with:

1. A worker comes to cook for me.
2. A worker comes to supervise me while I cook, or doesn't always supervise me in person but we spend a lot of time deciding things I could cook and planning what I will cook every day for the next week. I think this could make things seem a little easier but without actually doing it, it's hard to be sure whether I'd consistently cook for myself if I had more guidance.
3. I could be given more money so it doesn't affect me badly to get takeout or go to a restaurant instead of cooking for myself.
4. I could somehow get a meal plan at a college cafeteria--this would be nice because I wouldn't have to do dishes, but the obvious problem is that I'd have to go somewhere else to eat and that could be kind of inconvenient. It also would probably cost more money.

I'm not really sure which of these options would work but the short version is I would want some help with food.

Another thing I would want is someone to advocate for me and help me advocate for myself. I have a lot of trouble saying no and I also have a huge block on talking about my problems with fatigue or telling people when I'm sick or having a dissociative episode or haven't slept, or basically anything that makes it harder for me to do stuff. The reason this creates problems for me is because I can't call in to work if I am not doing well because I can't talk about what's going on. I also have trouble because one of the agencies I work for will sometimes ask me to work extra hours when it's not really healthy for me to do that; recently I've been trying to deal with that by not answering their calls and being so difficult to schedule when I do accept a job that they end up not giving me the job. I really don't like treating people this way but I feel like I don't have a choice.

So the short version with that is I would like someone that I can trust to support me when I'm saying I shouldn't go to work, work extra hours, etc., even if it's hard for me to articulate why and the person has to work to understand what's going on; and I would like the person to also be someone who can call in for me and also help me learn more about how to talk about this stuff better so that I don't have to go to work when I'm sick.

I'm not actually 100% sure if these things would make me have more energy/cognitive function and be able to do more "fun" things. Maybe I just don't have that much energy/cf and the only way I could pursue fun activities would be if I did not have to work. But I like my job, so that isn't something I would want.

I think that even if these things didn't make me able to do more they would improve my quality of life and my health a lot.

//

(1)

People are well-intentioned when they say that anyone can do ___ regardless of their disability, but it actually just makes them look ignorant. I understand the idea that a lot of people with disabilities who would want to do something and could do it are not receiving the support they need, and too many young PWDs are told they'll never be able to do the things they aspire to do.

If someone wants to do something you shouldn't tell them they can't do it, but that's different from making generalizations about everyone. My personal least favorite is "everyone can work." Well, for example, how is someone going to work if they can't move anything except their eyes and aren't suited for a job that they could perform just with their eyes? How is someone going to work if they're so depressed they can't get out of bed in the morning or make basic decisions? How is someone going to work if they're consumed by a desire to physically injure themselves all the time and it takes every bit of energy not to do that?

I wish this wasn't the case, but I hear people using the phrase "everyone can work" in almost an aggressive way, as if it's ignorant for a non-disabled person to say some disabled people can't work, or cynical or lazy of a disabled person to say that they themselves can't work. I think this shows a fundamental lack of empathy and if you don't understand why some disabled people can't work, then you shouldn't even be talking about disability and work because you are really uneducated.

Sometimes it seems like providers, family members, and even self-advocates have a homogenous idea of "disabled people" and they don't make room in their head for the large percentage of disabled people who don't fit their image.

(1) Actually I think Ratatouille does a good job addressing this issue, by acknowledging the difference between "everyone can be a great artist" and "a great artist can come from anywhere."

2.

My client cannot talk and often doesn't respond to things quickly. Her volition is pretty confusing to me when it comes to movement so all I can say is that her movement can be pretty telling, but I sure don't expect her to move on schedule or on command.

I feel like all this is implied with the vague label of "profound disabilities" and presumably we all know about people with "profound disabilities," so why is everyone so confused? I don't know what to say when people ask me why she doesn't look at them or answer them. I don't mean people with no experience, but people who are at programs with their disabled family member or client, or are even running the programs.

Also the eternal question, "Does she understand everything I'm saying?" to which the answer is a resounding, "I don't know."

Maybe I'm just a crappy person and I can tell you the idea has occurred to me before, but I get extremely impatient. It feels like a lot of people either demand responses from her due to their wholly unfounded assumptions that she can give one, or they just don't think about her at all. The idea that someone without obvious communication might enjoy some attention is just as baffling as the idea of someone without obvious communication existing in the first place.

I've sometimes gotten the impression that stuff that's "for developmentally disabled people" does not try to be inclusive of developmentally disabled people with certain support needs or that people who are "interested in working with developmentally disabled people" do not find it interesting to work with developmentally disabled people with certain support needs. I'm glad to say I haven't seen any extreme examples of this in the 5 months I've been working at this job--just impressions--but Single Dad Disabled Daughter writes about some infuriating stuff.

3.

On the other hand, I have a disability and I do have a job and answer people when they talk to me. So people who like disabled people who do those things should like me, right?

Well, not really.

I'm not sure why it is that a lot of people who claim to like and enjoy people with developmental disabilities, or even work with them, have a problem with people who are slower than they are, can't do things that they can do, or just look or act different. When they meet someone who they don't immediately recognize as disabled or who they aren't meeting in a context where they would expect to meet a disabled person, the friendliness they would show to an Actual Disabled Person is not there at all, and they are just as contemptuous as anyone else would be about the person's impairment.

The only thing I can think of is that when these people relate positively to disabled people who fit their idea of disabled people, they're not doing so because they actually like people regardless of disability, or even because they like personality traits that sometimes come from living with certain mental disabilities. It's because they've created a new category, "developmentally disabled people," that they see as different from other people and relate to differently from the way they relate to other people.  If a developmentally disabled person is too much of a peer, or looks or acts too similar to non-disabled people, they can't put them in the "developmentally disabled people" category, so they can't accept their disability.

Maybe it's an Uncanny Valley thing but I don't really care because I am coming out of the following situation.

I had a friend who spent a lot of time working with a group of people with developmental disabilities who are quite different from most people I know, and I knew that she liked that group of people a lot. Technically, she knew that I had a disability, and even professed to support disability rights. That sounds like a pretty good deal on a friend right? It was a long time before I admitted to myself that this person made me feel scared and uncomfortable about nearly everything related to my disability. When we met someone who I suspected might have a disability, I cringed inwardly because I knew she would criticize the person later for being too slow or too weird. I was afraid for her to meet my closest friends, who are all Autistic or crazy, because I didn't know if they would be able to hide their disabilities well enough to avoid being criticized by her.

There are some people who you know are friends with you because you're just barely good enough for them. And actually, there are people who are friends with you because you're bad enough for them, too--you're a "special needs" person to them, not an equal. Maybe I'm becoming an asshole but I have no interest in either type of friend anymore.

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.

to him it was a joy until he ran out into the warm air

About a month ago my mom was here and she said something about wondering if she and my dad had been too hard on me when I was growing up. We were talking about our respective MH stuff and I had mentioned I was probably more likely to kill myself than be unemployed.

If I wasn't like that though I would probably be unemployed. Do I ever want to quit my job. Not for all the ethical reasons. Just the working 3 12-hour shifts in a row with a 4-hour commute and 5 or 6 hours of sleep in between and eating one or two real meals in the whole stretch. I'm very able bodied but I still hate my body for its soreness and slowness and tiredness, my headaches, and I hate my brain for starting off slow even with enough sleep.

Sometimes I have had gaps in my memory a little bit and Clayton says if you don't sleep this will happen and you won't even know.

One of my best friends, who I know doesn't read this blog anymore so I can say this, is someone who I've consistently encouraged and cheerleaded in getting a job. Now they have a job and they are miserable. They live in fear of losing their job and they can't cope with that fear and working a normal amount of time makes them exhausted.

I'm tired too but what I am learning about myself is I can just keep going and going, everything just goes underneath something else. When I think about myself a year ago being all depressed about school and sleeping ten hours a day and eating I want to punch myself in the face. I'd give anything to be sleeping, I'd give anything to be someone who complains about having had less than eight hours of sleep. I'd give anything to be able to sleep without waking up scared. During the weekend I live from cigarette to cigarette and for Athena smiles and that's about it.

You know how I tend to put disabled people into two categories. Supercrips and not. All my friends hate it. It usually makes them feel bad no matter which one they are.

We're not so different, you and I. We all have no choices. If I wasn't more likely to kill myself than be unemployed, I just would be unemployed, and that would be a different thing to live through.

We're always going to be valued for our ability to work as much as an imaginary non-disabled person who even people without disabilities are killing themselves trying to become, especially poor people. Employment, or even just volunteer work (which sounds inspiring but doesn't help you get food or a place to live) is set up as this glamorous and touchy-feely goal for disabled people. It will give us a feeling of purpose.

I'm here to tell you there is no dignity in work. Work does not give life value. Disabled people who don't work don't have wasted lives--just very scary, miserable ones, because the world wants it that way.

Good work in bad places

To do good work in bad places has been an ambition of mine for years. I didn't even remember how much I had written about this until I happened to be looking at old posts on this blog. Originally I think I wanted to work with kids with autism and be the only person who was being gentle and not yelling in their face.

I do remember this one woman at The School who I'm sure contributed bad stuff in lots of ways (in an ABA school it's not like an individual instructor can really work against a fucked up behavior plan), but she was just very gentle. When the kids got excited or took initiative in making jokes or plans, she smiled to herself. Other teachers and instructors would jump at the chance to correct a kid's movement or word choice and they would have almost a hateful look in their eyes. This woman would correct them when it would have gone against the rules of her job not to, but it was softer, more like the way a mother or big sister would tell any kid to settle down and use their inside voice.

I'm seriously glad she was there, although obviously, who knows how the kids feel about it.

To do good work in bad places is an ego trip. To do things the way someone wants or be there right away when someone wants help. Having a nurse pass on a message from a resident, that I am the only aide who actually brings ice in the morning. That guy (who I'm glad has gone somewhere else because he really hated it here) would sometimes just stop me and say, "Anyone ever tell you you do good work?"

At three AM in the bathroom one of my residents was telling me how much it frustrates her that she has to spend the day in the activity room when there's so much she wants to get done in her room. "I want to write letters, my flowers are dead and no one has emptied the vase and new flowers are coming tomorrow. I can't get anyone to empty the vase." I threw the flowers away and emptied the water into the toilet of another room. She said, "Thank you so much, I don't have any money but if I did I'd give it to you."

There is also this thing with women with dementia, maybe one part of it is actually caused by the dementia, one part niceness, two parts fear. Or I don't know what to call it. Maybe for some people it's mostly friendliness, but it makes me uneasy. "You're so pretty." "You're so pleasant." "You're so nice." "You have such a pretty face!" "You're a good angel." "Thank you so much." "I get such good help from you, I want to give you a hug." "You're WONDERFUL."

Jesus Christ, no I'm not. I like hugs but not these hugs. I don't think I am the only person who gets them from most of these women--that is the first scary thing--but even for the people who I genuinely please or impress with my gentleness or carefulness, the satisfaction at pleasing them starts to go away pretty fast because I don't want to work somewhere where someone thinks I am special for listening to them or trying not to hurt them when I move them.

I used to want to work somewhere like that.

I'm not the smartest, fastest, nicest, or strongest person in the world. But I am someone who has a certain value set when it comes to working as an aide. I'm pretty aware of the ways that staff people can fall into abusing and controlling "clients," and I have a strong feeling that I'd rather be played than take away more freedom than my residents have already lost. I want to serve. I want to treat people as individuals. I don't want to get mad at people just for not fitting into a schedule. I don't want to treat people like objects I am moving from one place or time to another.

When friends have tried to encourage me to work somewhere that isn't an institution and doesn't have shitty ethics, I remember a time at camp when the awful guy was complaining about a guy with a disability who in his opinion acted with too much authority and was afforded too much respect by the other campers. "Sure, he may seem normal," the awful guy said, "but his elevator does NOT go all the way to the top floor."

Every single other person in the room laughed. "That's such a funny way to say it!" one girl exclaimed. All the people in the room happened to be counselors who didn't have a family member with a disability or much experience with disabled people prior to starting this job. Still, they had always treated campers with respect. I was surprised to hear them laughing at a joke about someone's disability.

I started to think that a lot of staff are like chameleons. Their attitude toward disability and their values as a staff person--their idea of what they're trying to accomplish in their job, and their definition of right and wrong--can completely change just based on where they are. The culture of camp was generally positive and respectful about campers so the inexperienced staff people picked this up and imitated it, but they were completely willing to talk about a disabled person in a disrespectful way if they got into a conversation where that seemed like the normal thing to do.

I am not a chameleon. For one thing, I'm disabled. Also, for various reasons I'm not unaware of my capacity for evil, and learning about staff infection has pretty much been my life's work (at this early date). I end up thinking there's going to be staff in bad places and it's better me than a chameleon. I'm not going to be untouched, I'm definitely going to get shaken and pulled into a lot of fucked up things, but I will do less than they would do. Hopefully, if I take their space, they might end up working in a good place or not working as a staff person at all.

This is the way I try to think about it mathematically. I feel like I'm not necessarily going to contribute much to the world, but I can contribute this. I am the kind of person who's more likely to be able to do good work in bad places.

The math is not always working for me anymore.

I read this: Heart Failure: Diary of a Third Year Medical Student. It starts off with this guy promising to always be the person he is. He probably stays more the person he is than someone else would, but it's still pretty horrifying to read.

Blah blah blah Nietzsche blah blah blah I'm thirteen years old, but battle not with chameleons because the longer you gaze into institutions the less and less there is of the part of you that was naturally inclined to do good work.

slow

This is a little boring but it does remind me of the overused simile where you feel like you are plunged into ice water. I was at work around midnight, with a resident I really like. Actually the first time I met her I sneakily teared up because she shares a name with my dead grandma, who I remember as a bastion of hyperfemininity and unconditional love. She also just reminded me of her even though she's more snarky. She has a drawling way of talking and moving which you could probably diagnose or not but I think of it as a style. She is always interesting to talk to and encourages me when the steady lift refuses to roll over her oxygen tubes or the cord for the bed remote.

After we got back from the bathroom and I ran over the tubes and cords, I picked her legs up and put them in bed. I aspire to someday do this in a way that doesn't hurt her bad leg, but if there is a way, I haven't learned it yet.

Her: Oh my God.

Me: I'm sorry!

Her: No, I'm sorry...for having feet.

Me: You're sorry for having feet?

Her: For having big feet.

Me: I'd be more sorry if you didn't have feet.

Her: Oh, God. That's one blessing I have.

(At this point I was expecting a joke about being blessed with big feet.)

"All the children were normal," she said. I sort of froze and, after a characteristic pause, she continued, "All the money and time that goes toward an invalid..."

I don't think I said anything else before I left. Maybe I said, "Yeah, well," which is the best response because maybe it leaves room for everything I could want to say. Anyway I had the ice bucket feeling.

At three she put on her light to go the bathroom. I actually felt nervous about what it would be like to talk to her, someone I had always looked forward to talking to before. Once I got her in the bathroom I crouched on the floor because my legs had hit the feeling where they feel like some other appendage that I'm using as legs by mistake. I closed my eyes but weirdly I almost felt afraid of doing this in front of her now as if I didn't want her to see my weakness.

She asked how I could sit like that so early in the morning; she didn't think she could. She had dreamed she went hiking with her daughter in Big Sur, where she has never been. After a while I wondered if she had fallen asleep in the bathroom and if I should try and wake her up.

"How is the bathroom stuff going?" I asked. She couldn't understand me the first time (this is not because she is old; I'm not the best conversation partner for anyone who has the mildest hearing or processing problems in the world). When she understood the question she thought about it and said, "Slow...like me," with a crooked smile. I realized one of the things I most admire about her is the grace of her slowness.

Hospice

Say it with me, I work in a nursing home. And while I don't consider nursing homes for old people to be the same as institutions for young PWDs (there is a big difference between going into a setting like this at the end of your life, and doing so as a young person often at the cost of pursuing the things that most people your age get to pursue), I do think I am learning about institutions and why they just aren't the best thing for anyone--at least not with staff ratios that are so badly suited for people's support needs.

This is obvious, but institutions create "behaviors." They create people who are demanding or mean or angry. A person who likes to go to the bathroom frequently isn't a bad person if they can go to the bathroom independently or if they have an aide at their house whose job is to take them to the bathroom whenever they want. But if the person shares an aide with 20 other people, she becomes "the person who always wants to go the bathroom and doesn't even fucking do anything in there" because of the effect that her quite innocent and harmless personality has on an already overwhelmed aide.

And the big thing is, some people don't want to sleep at night. They want to get up. They want help getting up and going somewhere. I clearly cannot provide this help. They get mad. I start thinking to myself, "why won't they just chill out and watch TV in bed," when the person wants something totally normal that I would probably be asking for sometimes if I lived in a nursing home.

There are various ways of dealing with this situation, but recently I was introduced to the idea of pretending that someone is about to die so they can get hospice services. This means that the nearby hospital associated with us will send an aide just for that resident, to stay with them and do everything they want. I guess when you're about to die you deserve to have all your whims followed even when you have support needs, whereas other people with support needs just have to suck it up and take what help people have time to give them.

I'm not saying this is exactly a lie since we probably do have to convince people that the person could die in 6 months. But it's not like this happens to everyone who might theoretically die in 6 months, because some people don't care or wouldn't get that much out of having their own aide. It happens to people who need/want way more support than we can give them. They are the people who are suddenly like, "you guys he's about to die, he needs to be on hospice!"

This is probably not that interesting but I just thought it was kind of a funny and not very subtle way of dealing with shortcomings of institutions.

I was going to try and write about this coherently and explain the specific reasons why my disability prevents me from driving but maybe I will do that another time. For now here is a cross-post from tumblr.

hate the assumption that everyone drives

I seriously see people argue that everyone drives/has to drive. um if you couldn’t drive because you would DIE, you would learn that there are other ways of getting around, but not only do they blow, other people constantly ignore or forget that you don’t drive! while I was trying to explain this situation to the scheduling person at my work, I tried to explain that it takes me FOUR HOURS to get to and from work, and she made a little wince face. yeah, sit on the bus for four hours a day and see if all you can say about that is a little wince face.

so here’s the deal, help me out here because I feel like these kind of rules aren’t always set in stone if you actually have a good reason, but like…I’m a supercrip mongoose and there’s nothing I’m worse at than explaining I’m in extreme circumstances. I’m probably going to write a letter and then it’s going to be like “oh just talk to her why did you write a letter lol” (I actually tried to write a letter originally but I got redirected to talking and the little wince face, yeah, NOT HAPPENING AGAIN)

if you have talked to me about my job you might have gotten the impression I hate it. I actually love my job, I have the same job as Hodor. let me rephrase—I love my job WHEN I’M AT WORK.

don’t love that I get paid to work 40 hours a week, but spend 20 more hours riding the bus, for a grand total of SIXTY HOURS. don’t love being home for only 12 hours in between two work nights—go to bed! sleep! wake up! eat and veg out for an hour, feed the mysterious homeless cat, get dressed, go back to work! if you are wondering how I manage showers I would advise you not to come too close to me.

if you talk to me at night when I am about to go to work, you would never get the impression that I love my job, because I fucking hate my job when I wake up at night and I can feel my short period of freedom immediately slipping away from me. I don’t hate work but I hate that I have no fucking time.

so, I was considering asking to work 3 12-hour shifts instead of 5 8-hour shifts. I knew some other people did it and it would save me 8 hours on the bus and give me longer periods of free time. but I didn’t really get around to asking because it wasn’t a huge deal and I didn’t want to change my routine so early.

then this thing starts happening where when I walk to work at night men follow me and stuff. one time this happens when I leave work to go to walgreens at 3 am, and this time other staff notice it because the guy drives into the parking lot to look for me and then drives away when security comes out.

so that morning 2 nurses from the day shift made me go sit in a room with them and gave me a talk about DON’T LEAVE THE PREMISES AT NIGHT, which I swear to God began, “Aw, did you think you were in trouble? Don’t worry, this is for your own good.” I don’t know how much more annoying they would be if they knew I have a disability, but when people don’t consciously know I am disabled they subconsciously perceive that I am 11. in this case, an 11-year-old who’s asking for it!

but stuff also happens to me when I am just walking to work, from the bus, when I have no choice! staff have also concern-trolled when they see me walking to work from the bus stop. “THIS ISN’T A SAFE NEIGHBORHOOD.” oh yeah you think?

anyway after the adventure with the guy in the parking lot, I’ve finally decided fuck this I want to start working 3 12-hour shifts and getting to work WHEN IT IS STILL LIGHT OUT PLEASE.

so…then they told me that only people who work on the independent living floor can have 12-hour shifts and people who work in LTC can only have 8-hour shifts. even though aides who technically work on the independent living floor get assigned to work in LTC all the time. that’s how I met so many people who have 12-hour shifts! so it’s clearly like, a policy/way of doing things and not the way things have to be.

God help me, the first thing I said was, “Oh, well can I work 16-hour shifts then?” and she was like “I’ll get back to you about that next week” and…yeah, fuck me, I would do it if they let me, but I’m still worried.

I was obviously totally unsuccessful at pulling at the heartstrings and explaining how extreme this situation is. I’m not crazy, right? this isn’t just me whimsically asking to work 12-hour shifts because I like the number 12. but…there I was bleating, “but my bus ride is 4 hours” and not hitting on the important ideas like, “MEN FOLLOWING ME IN CARS.”

so I’m probably going to write a letter, but yeah, advice is appreciated because the current form of the letter is pretty angry.

Annie

(The story in this post might be upsetting to some people because it involves trying to pressure someone into taking medication and judging them for not taking it.)

I feel like I shouldn't be posting right now because I should be sleeping and I'll be tired on the way to work, but I feel like I use the excuse of sleeping to avoid almost everything, like church, and I barely sleep anyway so here I go.

"They say an unhappy man wants distractions--something to take him out of himself. Only as a dog-tired man wants an extra blanket on a cold night; he'd rather lie there shivering than get up and find one."--CS Lewis, A Grief Observed

When we were freshmen Clayton and I had a friend, let's call her Annie. I don't know how much of this is 100% accurate but I don't think Annie reads this blog, so it's probably all right to just tell you how I remember it. Annie identified herself in conversations as someone who had a mental illness and sometimes hurt herself, and one day she casually told me that she probably should be on medication because she was at an age when the way her brain was was being solidified and if she didn't go on medication right now, she would always have problems. She told me this like it was funny and she didn't particularly care to do anything about it.

Clayton and I both have savior complexes and we made it a project to try and get Annie to go to student counseling. Never mind that he would later realize how fucked up he had gotten from the medication student counseling put him on, or that I've been virulently anti-medication of any kind since I was 16, to the extent that I would rather throw up from pain than take an Advil. For whatever reason we decided that we were right and Annie was wrong and we had to get her to go to counseling.

It was almost summer; Annie wanted to be outside when it was sunny so she could skateboard and hang out with her friends. Every day the two of us would descend on her and try to get her to go to counseling and she would say that she didn't want to go until it was dark. Student counseling closed at five in the evening so this was the same as saying she could never go. I remember how ridiculous and reckless Clayton and I thought she was, and how much we annoyed her.

Annie and I grew apart over the next three years but she is someone I admire a lot because she's so smart and interested in so many things. Sometimes it seems like she just has to think of something she'd like, and all the resources appear to make it happen. I found her hard to be friends with because she moved so fast--she would suggest doing something, I'd resist it because it went against my schedule, and by the time I started realizing I would like to do it she would already have left to begin it.

The point is though that a year or two ago I started really understanding how I could see Annie's decision as smart, not stupid. It got me through the last year and a half of college, trying to think that way--blinding myself to the big picture, trying to unfocus my eyes and look at seconds and colors. I couldn't do things right and I couldn't feel good a lot of the time so I stopped trying. I didn't fail. When I saw something in front of me that might make me feel good, I took it.

So for a long time I've been on that kind of track and I've realized how hard it is for someone outside to see why you don't listen to "reason." Why you'd rather ride in a car than worry about your problems taking care of yourself. Why you'd rather have fun smoking than figure out if you will let yourself live long enough to die of lung cancer. Why instead of constantly apologizing to yourself and everyone for not being more organized, you're making Kraft Macaroni and Cheese in a huge pot and watching YouTube videos with your roommate.

The thing I feel most clearly now is that it was none of my business what Annie did with her time. I'm not as clear on the rest of it--how being like Annie applies to me and how I should feel about it.

I found myself talking about Annie today. I was trying to argue why it's okay for me to be involved with men even though I am gay. I'm probably going to get upset writing about this because the conversation turned to an end that felt more permanent than usual. I know I was convincing him at the beginning. At some point it wasn't working anymore for me to say "we should live in the moment" and "I don't expect to ever have a family or a relationship with a woman, so we might as well try and feel as good as we can."

And I remembered, a few years ago I would have thought being with a guy was like throwing something in God's face, being too lazy and desperate for comfort to feel anything but the shadows of what I could feel. I would have thought it was the real thing or nothing, and even now it's hurting me to type that it's not the real thing, because I want it to be as good as the real thing when it's with a guy, but it's not and that's not my fault. And the boy wasn't hurt, he's the strangest, nicest boy--he was relieved.

The truth is it's very hard for me to work especially not being a driver, and it's really hard for me to live on my own, and the only people I talk to outside of work are men who try and bother me. Giving up smoking is a serious sacrifice not because of nicotine as much as the fact that I lose a reason people will talk to me. I'm really sad right now. Sorry if this is too much information, but I've been going back and forth on the Annie thing for such a long time, and I wanted to write about it. Not Annie herself because obviously she shouldn't have been on meds when she didn't want to be, but thinking about endgames vs. staying in the sunlight whenever I can.

The thing is I don't know if I ever felt so much this way since I was on meds myself in tenth grade. Every day I'd take stimulants and spend a few hours thinking everything was really special and important, not realizing how much I didn't notice or how fucked up everything had gotten. As the day went on I got sadder and sadder and the only thing that mattered to me was--guess what--the person I was dating, who I wasn't actually attracted to.

Towards the end of the drugs, in some sobbing state, I told my mom I wasn't happy. My mom saw me all amped and buzzed up on the way to school every morning after I downed my Wellbutrin and Adderall. She said, "But I see you happy every day."

I said, "but I'm not a happy person."

I built myself back up through the two depressing but somehow joyful last years of high school. I was a very sad but happy person by the time I turned eighteen. I'm not sure how lazy and distracted I must have gotten, to get so far off track--because yeah I have to look at the small things, but this has gotten small enough to seep into all of them.

I'm not a happy person.

And this is me telling God and myself that I'm going to get better.

This is just something I've noticed in a few environments. I work in a nursing home right now but I think it also applies to staff who work with people with DDs*. The idea is that if a "client" or other euphemism is rude to you, you can be rude back to them.

Sarah: I don't like you!
Aide: Well, I don't like you either. (turning to other person) Look how obnoxious Sarah is!

Okay, let's take a minute because this is really weird! First of all, the experience of having someone who openly dislikes you come into the place where you live and take care of your personal care stuff has got to be depressing. I can't help but think it just might make someone LESS LIKABLE. It also sounds scary, no matter how principled the aide is about not letting their opinions affect their work.

My personal feelings aside though, this just has nothing in common with how service people act in, like, every other type of job. If you were cashiering and a guy was yelling at you for ringing things up slowly, you would apologize. If you were cutting someone's hair and they started bitching, you would go along with it. It doesn't matter that they're being rude, YOU WORK FOR THEM.

I guess some people would say this is because unlike long-term euphemisms, this kind of customer can take their money away from you at any time. But I don't really think this is the whole thing. Bus drivers are pretty nice and I'm not exactly going to go buy a car if they piss me off. When I worked at my college dining hall I would have gotten in trouble if I'd been rude to someone who was eating there, but they were going to eat there anyway.

Really I think the whole business is more simple. When you are being paid to do things for other people, you put yourself out, because you are working. If you did whatever you felt like it wouldn't be a job. It would be doing something nice for someone because you wanted to.

Probably a lot of people in service jobs like doing nice things for people, and that's part of the reason they chose the job they did. But I think some people who do support work never really separate doing their job from doing something for someone else in real life. They don't do bad work--they really care, and they have good relationships with the long-term euphemisms who meet them halfway. But if someone doesn't meet them halfway, no professional code snaps into place, no "the customer is always right"--there is just this person you have to take care of, just like if you had to take care of your grandma and she was mean. But it's not the same thing! You work for them!

I just think this is creepy because I would be creeped out if I was the long-term euphemism everyone hated and kind of glared at while putting my clothes on and giving me a shower. But it's also just not professional. Sometimes I think it happens because, without really acknowledging it, we recognize that this class of clients can do less to punish us if we piss them off. I don't think this is as consciously selfish as I'm making it sound, but that's one of the things that makes it scary.

*(Actually I think there's an extra thing when it comes to DDs, because staff sometimes have a feeling even if they're working with an adult they are supposed to be shaping/improving the person's behavior in the way they would with a kid. So it's not even that they're being rude in response to rudeness, it's that they actually think doing their job well includes telling a person to say please or think about how the things they ask for affect their staff person.)

last chapter of a very long story

Dear L,

I need to tell you something. I never completed the staff review form this summer because I was afraid that it would be obvious who I was even if I mailed it in anonymously, and that if I said what I thought, I would not be asked to return to camp. This winter, when I realized that I had not been asked to return anyway, I decided that I would probably write to you and tell you this.

I don't expect you to answer this but I do ask that you read it carefully and think about what I have to say, because I think that camp will be a safer and better place if you read it. I know you're busy with work and preparing for the summer, and that you may not get to it right away. But I have faith that you will read it. Thank you.

As you may or may not know, I was born with a disability. When I was growing up, I never went to a camp like [name of camp] and there were not many social groups for kids with my disability. When I came to camp in 2010, it was the first time that I was able to meet and get to know people with disabilities and this is one of the reasons that camp has been so important to me. Both summers, I told some other counselors that I am disabled and they were supportive, but I generally do not like to tell employers this for fear that they will assume I am not able to perform the functions of a job because of my disability.

In the first session of camp in 2011, a fellow counselor told me that he considered our young campers to be "brats who needed discipline," and that when his campers were annoying him, he wished he could hit them. He was angry with the campers for doing things like becoming upset, crying, being mad at him, or not responding to commands. I tried to defend the campers, but he said that he didn't see why I liked them so much because they were "just brats," and implied that I was bad at my job because I didn't share his views on how to discipline campers. (Through other staff, I later found out that this counselor would do things like bringing food to his cabin that the campers were not allowed to have, and eating it in front of them.)

After having this type of conversation with him a few times, I felt so scared by him that I no longer wanted to be around him. Given the attitudes he expressed toward people with disabilities, I didn't feel safe telling this other counselor that I am disabled. We had become friends during orientation, and he didn't understand that (from my perspective) we could no longer be friends. He expected that I would still want to spend time with him during breaks, but I now tried to avoid him, though I tried not to offend him or make it obvious what I was doing.

I found the situation so upsetting and awkward that I didn't know what to do. I strongly considered quitting camp and leaving immediately. It was hard to stay, but I chose to stay because I cared about my campers and because of the effects on the workload of other staff if I were to suddenly quit. When other staff would have conversations about this counselor, I would participate in them because I was so upset by the situation. I know that this wasn't a good course of action and I'm sorry for talking about another counselor when he wasn't there. It was wrong.

But, when I was able to talk to an authority figure about what happened, I felt like I was in more trouble than the person who had expressed a wish to be violent toward kids with disabilities. I had actually imagined that this counselor might be fired, but my concerns were not even acknowledged, and I did not get the impression that he was ever told his behavior was wrong. Instead, I was told that I shouldn't have "talked about him behind his back," as if it was just an issue of the two of us not getting along. (In fact, we had been friends up to that point. I didn't have a personal problem with him.) I was also told that I should have confronted him directly about why I was upset--but as a person with a disability, I don't feel safe confronting someone who acts so hateful about people with disabilities, and besides, I had already tried to talk to him about it several times.

This was a tough experience that I was really disappointed by, but I got over it and had a great time at camp. I worked hard and dealt with some challenging situations, like being a float in session three and being given responsibility of a very high-need camper in the middle of session four, when D quit. I think that I dealt with these challenges well; even when I was stressed, I never let it affect my positive relationship with my campers. I think this is the most important part of working as support staff, especially with vulnerable populations.

However, I felt like I was seen as a troublemaker after the incident in first session. Several times I was told off for supposedly doing things that I hadn't done, like smoking in camp buildings and disregarding the safety of campers. These things were not true, but the conversations about them always occurred in a public place and were very brief, so I rarely got a chance to explain. I didn't want to arrange a meeting with you to explain why I felt I was being held responsible for things that didn't happen, because it seemed like making a big deal out of nothing. But I knew that you were probably forming a bad impression of me, and I wasn't surprised to learn that I am no longer wanted at camp. I'm incredibly sad to get confirmation, but I am not surprised.

I know I am responsible for what happened because I should have addressed this while it was going on. I can't change it now. But it would mean a lot to me if you would keep my comments in mind when dealing with other staff and campers in future summers.

Thank you so much for reading all of this.

Sincerely,

Amanda