Inaccessibility

I was meaning to write about experiences I've had in stores and restaurants with my beloved boss Anna. A few things about Anna are relevant to these stories. She uses a wheelchair; she needs help eating; she sometimes impulsively grabs or knocks over things in her field of vision; and she has severe, frequent seizures which require a specific medical protocol.

A person in our situation has a weird line to walk. If I just got really mad about things being inaccessible, it would seem aggressive. Despite accessibility being the law, there's a degree to which people seem to think it is just an extra perk you can add to your business, and actually complaining about inaccessibility is entitled behavior. Also, it seems like if something isn't 100% inaccessible, you're supposed to be happy with that, even if their attempt at accessibility doesn't really work for you.

And you do catch more flies with honey than you do with vinegar etc. But the truth is that if a disabled person can't get into a store or restaurant, isn't treated respectfully when they are there, or has to do a lot of extra work to access the same things as everyone else, this isn't fair and makes it hard to do everyday things.

For me personally, attitudes are more important than physical accessibility. If staff apologize and are willing to help a customer because something's not accessible (for example, bringing them items from a section of the store that the customer can't get into) I am not as bothered. If they act clueless or hostile about how inaccessible their business is, that's when I start to get really irritated.

Anyway, here are some stories.

Walgreens

Anna and I used to go to a certain Walgreens, but it was renovated and the new lift was too small for Anna's wheelchair. She got stuck in the lift while we were trying to go to the second floor of the Walgreens. With help from store staff, she got un-stuck from the lift, but it was clear that we wouldn't be able to get upstairs.

A store staff reassured me this wasn't a problem, because he would get us whatever we wanted from upstairs.

I explained that I wanted to show Anna a few ribbons so that she could choose between them, so I wasn't sure how to pick out what to buy if she couldn't go to the second floor.

"You can go and get them to show to her," he said.

"Hm, I don't want to leave her alone," I said. "Could you go and bring back a few ribbons so she could choose between them?"

"Oh, I can stay with her while you go," he said cheerfully.

(I just want to reiterate that the reason Anna has 24 hour care isn't because she can't stand to ever be alone. It's because she needs help with a lot of things and has seizures. It's not hard to take care of Anna, but it is specific; this random guy would not do as a replacement for me if she had a seizure or needed any kind of help.)

Not knowing how to argue with someone who was not interested in helping me the way I asked, I hurried upstairs, grabbed the first ribbon I saw, and came back as fast as I could. After this, I never brought Anna back to the Walgreens.

Crystal Store

I thought about taking Anna to a crystal store. When we came up to the store, two friendly guys eating at an outdoor café took an interest in Anna. She had a big smile on her face and was very charming. They talked up the store to us, telling us it was really fun. I pushed Anna in down a narrow hall, but then saw that the hall ended in steps.

We came out again. The guys at the café were sad to hear that we weren't able to go in. Then the ladies from the crystal store called after us that they had a ramp they could put over the stairs--they just had to find it. "See, you will be able to go in!" the guys encouragingly said to Anna.

Anna and I waited as the ladies looked for the ramp. When they found it, it was terrifying looking--steep, slippery, and narrow. It didn't seem very stable when they put it over the stairs, and I couldn't bring myself to actually try pushing Anna down it. We left, to the disappointment of our new friends.

Mexican Restaurant

Anna and I were at our favorite taqueria. If I go there by myself, the staff ask, "Where is the girl?"

Where you're supposed to stand in line is organized by ropes. According to Google they're called "crowd control stanchions"--they're, you know, those ropes on poles that show you where you're supposed to wait in a line. Anyway, at the taqueria, the space between the ropes is way too small for Anna's wheelchair to fit. So we couldn't wait in line. There were only a few people in line, so I just awkwardly waited with Anna next to the line.

A lady in the line looked at us. She moved the poles apart at the beginning of the line so that the entrance was wider. "Does this help?" she asked.

"Aw, no, I think we'd be able to get in, but we would just be stuck," I said. It was true--the rest of the line was still very narrow.

A minute later, the lady said, "That table over there is free. You could put her over there while you're in line."

As I've mentioned, I really cannot leave Anna unattended in most places. This sounds overdramatic, but in addition to seizures, there's just the sheer variety of stuff she might be interested in grabbing and knocking over--glasses, tables, bowls of chips, napkins, plants, etc. If I'm looking at her and watching what she's looking at, I can usually get an idea of what things are in danger and need to be moved out of reach, but sometimes I don't see things coming or she changes her mind. The table she was happy to rub her face on a moment before now becomes an enemy that must be shoved away from her as hard as possible, making dishes go flying and stabbing the side of the table into anyone who is sitting across from her and doesn't get out of the way fast enough.

Anyway, if I have to get up while we're sitting at a table together--say to get a straw or something--I go extremely fast and practically walk backwards so I can see if Anna is thinking about wreaking any havoc. This is for, like, a thirty-second trip at the most. The idea that I could wait in line, order food, and pay for it while Anna sits by herself at a table is ludicrous. Sorry Anna but it's true.

Not really knowing what to say to the lady, I gave the non-response of, "Yes, that looks like a nice table. I think that's where we will sit after we get our food."

Other Mexican Restaurant

I was very excited because we'd made plans to go to this restaurant with our friends "Otter" (another severely disabled lady) and "Penguin" (Otter's aide). I'd always wanted to take Anna there because it has an extensive menu and ornate decorations that I thought she would enjoy looking at. I'd worried because it is crowded at times, but I'd done my research and concluded that if we went there for a late lunch instead of dinner, it wouldn't be crowded at all. This would be nice because the four of us take up a lot of space at a table, both because of wheelchairs, and because I sometimes sit Anna next to the table instead of at the table so she won't push the table into Otter and Penguin.

When Anna and I came in, I explained to the waiter that we were waiting for two friends, one of whom was also in a wheelchair. He drooped with unhappiness and repeated, "Two wheelchairs?" like he was saying, "Two chupacabras?" Having one chupacabra in your restaurant is bad enough! "Well...I'll have to set you up in the back," he said. "There's nowhere else that will work."

(Looking around the restaurant, I saw other tables that would work, but I didn't press the issue. I think he was partly laboring under the delusion that everyone in a wheelchair wants to sit at the table. I know many people, like Anna for example, who don't have to sit at the table when they eat. I also know some people who can't sit at the table when they eat because they lean back in their chair and their aide feeds them standing up. I really wish restaurant staff would not try to choose or set up a table for wheelchair users without finding out what the person actually needs.)

Otter and Penguin arrived and I pushed Anna a little further into the restaurant to make room for them. "You'll have to wait!" the waiter admonished me. "I have to set up the table!" (As predicted, the restaurant was almost empty, and no one was eating in the section where Anna and I were.)

It turned out that setting up the table just involved removing a few chairs from the table and a few barstools from the bar. But I wasn't sure I'd be able to feed Anna if she sat where the waiter was planning for her to sit. "She needs to sit there," he said. "There's nowhere else she will fit." I ended up being able to move the remaining chairs and barstools around to get her into a better place.

Then, the following things happened, some of which I wouldn't have cared about if they hadn't all happened in combination:

1. The waiter only brought menus for Penguin and me.

2. He only brought glasses of water for Penguin and me. Then he asked us if he should bring water for Otter and Anna.

3. Penguin: How big are the meat strips in the chicken or steak quesadilla?
Waiter: This big.
Penguin: Then [Otter] will have chicken strips.
Waiter: The chicken strips are just as big as the steak strips.
Penguin: Yes, but chicken will be easier for her to chew.
Waiter: Okay, but you should probably still cut them up into smaller pieces.
Penguin: Yes, I will.

4. Otter and Anna are not dainty eaters. They have motor issues! Plus, Otter loves food. She once picked up an entire omelet in her hands and started feeding it to herself like you would feed a carrot to a horse, while ham and cheese fell out the back of the omelet and trickled down her shirt. That is just Otter's way. Penguin and I always have a lot of napkins handy to catch food and wipe our bosses' faces, hands, and clothes. There just isn't any amount of thriftiness that would make us not need all of these napkins, if we don't want Anna and Otter to be wearing their lunch.

Anyway, Penguin asked the waiter for "a stack of napkins."

He said very sternly, "I can bring you a few napkins, but I can't bring you a stack of napkins. We're trying to conserve."

He brought us three napkins. Fortunately, we had both collected unused napkins from a previous lunch for a situation just like this one.

5. I ordered a quesadilla for Anna and me to share. She eats slowly, so by the time she was done, Penguin and Otter had both finished their food. I hadn't eaten anything yet because I had been feeding Anna. I was about to start eating my half of the quesadilla when the waiter appeared and asked if I wanted to put it in a box. I was startled. "No, I'm going to eat it!"

"Really?" he said. "Well...to be determined, I guess." He went away again.

(Again, barely anyone was in the restaurant--we weren't taking up anyone's table with our slow eating.)

I'm not sure I can fully explain my gripe with #3 and #5, but all in all this is one of the most unfriendly experiences I've had in a restaurant with Anna. A stack of napkins! Quelle horreur!

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.

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.

A fun experiment!

Imagine a rich, successful executive has a personal assistant. His personal assistant is knocking at the door in the morning and he finally gets ready and comes down. The assistant says, "What took you so long? I want to go shopping."

The executive says, "That's not what I was planning to do today."

The assistant says, "Well, I need to go shopping and I haven't done it in a long time. Come on, it'll be fun." She proceeds to bring him along with her as she goes shopping, does all her errands, and hangs out with her friends. What's in it for him is that he gets a chance to get some coffee or something.

If this seems weird and confusing, instead imagine that a disabled person has a personal assistant who is behaving this way. I don't have to imagine because I know lots of PAs who do this. It is jacked up, but completely socially acceptable. Why?

I'm guessing because the client is not able to use words to tell them to stop, or is easily convinced to be agreeable and not express their real preferences, or because if they do complain, the PA can just say, "That person just isn't patient or empathetic to my needs because of their disability," or, "That person is just confused and being contrary because they have dementia." AND, because clients are often not able to fire their PA, or at least can't do so immediately/directly. (For example they might be able to tell the agency providing them services that they don't like this PA, but if they need help eating, it would take a lot to just tell someone, "Okay, you're fired," in the middle of dinner. Especially if someone needs a PA with them at all times, that makes it hard to stand up to someone. Or someone might think, "Well, this is kind of annoying, but it could be a lot worse. I might not find someone else who is friendly and knows how to handle all my medical needs.")

I just think it sucks, a lot, that some PAs think they can just schedule their client's life around whatever they want to do. Even if someone can't communicate very much and you have to guess what they want to do, you should still do that, not just pretend that you think your blind client wants to go to a silent movie with you or whatever. You are doing a job. You are getting paid. If you want to do whatever you want all the time, then don't have a job, because that is not what a job is, and in no other job is it so acceptable to railroad over the preferences of the person who should be your boss.

Why I Published A Picture of a 24-Year-Old Looking Bored With a Stuffed Dragon

Like many people, I recently saw a picture of a disabled teenage boy in his underwear. I'm not going to post the picture since I don't find it appropriate or appealing to distribute near-naked pictures of minors. If you don't know about the picture, it was the main picture on an NPR article about the boy's parents and their experiences taking care of him. Now you have enough information to find this picture--and what 16-year-old wouldn't be thrilled if the entire Internet community could find a picture like this of them?

It's true that most 16-year-olds wouldn't like it at all, but almost no one considers your perspective if you have a severe disability.  When disabled people complained about the picture, NPR ran another piece defending their decision and a bunch of non-disabled people made comments about how beautiful and important and meaningful the picture was.  All these people--the author of the new piece, the photographer, and most of the commenters--failed to comprehend any of the complaints that had been made. It is amazing how much people just refuse to hear information that has to do with disabled people having a perspective.

To hear them talk, the only people who had problems with the picture were just weenies who were shocked to see an image that refers to personal care.  The commenters especially seemed to feel that they were crusading for great justice, shutting down a bunch of Cloudcuckoolanders who want to remain unaware of the fact that some people need this kind of care and it can take a physical toll on their family members. The popular phrase was, "When I look at the picture I don't see all the stuff you're complaining about, I just see LOVE."

Most importantly, this is bullheaded ignorance of the fact that a)disabled people have opinions, b)most people would not like a picture like this to be distributed of themselves so it's a double standard, and c)no reference was ever made to the boy, Justin, being asked his opinion, nor whether he was able to give his opinion.

But on another note, I'd like to put forth my disabled opinion that this simply isn't a very good picture and that it represents neither love nor the real experience of caring for a severely disabled person. I'm not a parent, nor do I expect to ever be able to be one because of my disability; but my job is taking care of a severely disabled person, who I happen to love. My job involves personal care sometimes (how shocking), but also endless attempts to take good pictures of Anna. She doesn't care about pictures, but her dad is a photographer, her mom is an artist, and I am a member of the Selfie Generation, so we feel compelled to document every adorable and interesting thing that Anna does. Since Anna is quite adorable and interesting, she has to contend with this kind of thing pretty often.

Here are some of my pictures that I consider bad:

I consider them bad because they don't do what a picture should do--show who a person is. In the first picture, Anna is not looking at the camera and her face isn't visible. In the second picture, she is visible, but she is tired or lost in thought, so her personality is not portrayed in the picture. Actually it's not a great example of a really bad picture, because she sort of has an expression. The point is that in many candid pictures of Anna, she looks very blank and much more like a stereotype of a severely disabled person than she does in real life.

Here are some pictures I'm proud of, because they show Anna's personality.

 

I'm not a very good photographer, but I can sometimes get accurate pictures of Anna just by choosing the right time and talking to her while I'm taking the picture so she is interacting with me instead of hiding from the camera. Or I might take a picture of her while she is doing something she really likes to do or interacting with someone else. This seems pretty obvious, yet Andrew Nixon of NPR did not seem to think doing this was important. If you cut out the "shocking" part of the picture (that the boy is almost naked and his dad is carrying him) this is the supposedly loving image that you get.

I feel he could have taken a better picture of the dad too, but the most obvious problem is that you can't see the son's face. He might be smiling back at his dad, but you really can't tell because of the angle, and you have to work hard to even guess what his expression might be. I don't see the love or realism in this picture because I can't see the connection and interaction between the father and son. Some people think that taking care of a severely disabled person is just a heroic task where you cart around someone who doesn't even know you're there, but that's not reality. It's not unrequited love.

Andrew Nixon took a picture of two people, and failed to take it from an angle that included both of the people in the picture.  Without the "shocking" parts, it's obviously a bad picture. Rather than people not liking the picture because it's too shocking, it seems to me that people who like this picture like it only because they find it shocking.

The article includes another picture, where Justin is getting physical therapy. No one has much of an expression, and Justin especially almost looks like he is asleep. I don't really mind this one too much though, since it was not used to illustrate the article and everyone is fully clothed. Finally, at the end of the article, is an actually good picture of Justin. It looks to me like someone who Justin actually relates to (i.e., not the photographer who obviously doesn't know how to interact with him) has stepped in between him and Nixon.

Justin is at his birthday party, and clearly interested in what's going on. I think he's not looking at his cupcake as you might expect, but at a person he likes. Anna's dad also thought this was the best picture in the article and should have been highlighted because, "he's with it; he's paying attention."

There were a few comments on the article from people who thought Justin had, and I quote, "no cognition" and therefore his life was meaningless. His mother contacted some commenters to explain that of course he has cognition, which I am glad she did. But she could have done something better if she had demanded better pictures to be used in the article than ones that did not show Justin's face, or where he looked blank, which play right into the idea that severely disabled people don't think and disabled people in general don't have perspectives.

I'm not saying it is the parents' or Andrew Nixon's fault that people make those kind of assumptions about someone with severe disabilities, but they all could have fought against those assumptions by making an effort to include better pictures of Justin that portray his personality and inner life. Apparently none of them realized why it was important to do this, and they unintentionally advanced the idea that what's important about severely disabled people is the physical support they need, and not that they have personalities like everyone else.

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.

The Door Police

I've been trying to have a good attitude about people opening the door for Anna but today it all boiled over and I almost told someone, "Excuse me. Do you have any idea how rude you are and how stupid you look? Just leave us alone."

This is a little extreme since people are "just trying to help," but it is SO annoying and stressful.  Here's the situation: Anna can walk, but she needs someone to walk with her and she also needs her wheelchair nearby.  So if only one person is with her, she just rides in the wheelchair.  She can't operate a chair so she is just passively riding.

One thing Anna can do is press buttons with prompting and support, so her parents always have her press the buttons for her chair lift, elevators, and doors.  They taught me to have her do it and it made sense to me because a)pressing buttons is an important skill if all your communication devices involve pressing buttons, b)it's something active Anna can do to help herself get around.

We go to Starbucks a lot and they have a closed door with a wheelchair button that opens the door.  This should be a good opportunity for Anna to open the door for herself, right?  WRONG because just as I move Anna into position to press the button, someone leaps up to open the door for us.

Why does this happen?  A cursory glance shows that I am putting Anna's chair close to the button, moving her arm in front of the button, and encouraging her to press the button; and she is extending her finger to do so.  It's obvious that our goal is for her to press the button and it is not helpful to take away her opportunity to do that.  Yet people rush in to press the button or open the door out of some instinct of "that's what you do for disabled people."

I know they're just trying to be polite and for some people in Anna's neighborhood, she is a familiar figure who they want to be friendly to.  Plus, I'm sure I've done something similar to a wheelchair user in the past.  I honestly have tried for so long to not resent people for opening the door for us, but today it hit me: every trip to Starbucks has become a race against the Door Police.

All I want is for Anna to get to perform a skill that she can do.  But every time we enter or exit Starbucks, I take in the situation and see if people are close enough that they can immediately leap in to save us, or if it will take them a minute to get over to the door.  If they're close to us, Anna doesn't stand a chance--she just isn't fast enough to push the button before someone puts an end to our imaginary predicament.  But if people aren't that close to the door, Anna might be able to push the button!

If Anna pushes the button in time but pushes it too softly for it to work, there is no way she'll have time to try again.

I always feel disappointed when Anna doesn't get to open the door herself--frustrated that the button is not more sensitive or that I didn't move her hand more quickly before people noticed what I was doing. But why should we have to rush or get it right on the first try?  If people would actually look at us instead of assuming we need help because Anna's in a wheelchair, then she would always get to open the door.  Instead she doesn't get to most of the time, but if I ever expressed how annoying it is that people won't let her do it, I would be the asshole for not appreciating their good intentions.

//

(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.

I work for a nice family. I hope they aren't regular readers of my blog because I am going to quote one of them (from memory, so not very well, but I feel like it's an important thing to think about).

"You try to figure out tricks to keep social interactions going, when you have a child who is often unresponsive. Someone asks them a question and the person is waiting and waiting, and so then finally you say okay, and you say something to keep the interaction going. But over time, the time before you answer keeps getting and shorter, and your child is getting phased out of the interaction."

"Would it kill staff to ever show the slightest bit of respect or compassion to their euphemisms?"

This is the opening line to a lot of my mental post drafts but pretty much all of the drafts are just different stories about my adventures working at a nursing home, at which I am going to work for 24 more hours before I move to California, where I am considering working in a gas station, or maybe becoming a professional Pokemon trainer, but most importantly not touching this kind of work with a ten foot pole for the rest of my life.

We'll see how long I can keep that up.

My mom asked me what kind of jobs I was thinking about applying for in California and I didn't know how to explain why I might not want to work as an aide anymore. When the average person hears that you work in a nursing home or with disabled people, their reaction is to think of you as a nice person and, I think, even gentle, which is more important to me. It seems like such a departure for me to explain why my inclination for support work actually feels like one of my worst qualities, and how I feel like if I was a braver, more adaptable, or just more ethical person, I would dive into a completely different line of work and never come back.

I think even a lot of people who would consider themselves fairly "radical" or social justice-y wouldn't understand why I feel like there is a huge push toward unethical behavior in a lot of support jobs. If someone isn't familiar with it it is easy to tell me I'm worrying about nothing and I should just feel proud of what a good person I am for working in a nursing home.

I tried to explain to my mom by telling her something small. People who work on the night shift are assigned to get two or three residents up and dressed by the time we leave, which is about seven. Sometimes we're supposed to shower them too. According to the rules, we're supposed to start get-ups "no earlier than 5:30," but this is one of the rules that no one will care if you break, and in fact it could even be considered a good thing.

If someone has to leave early, they will have their residents dressed by five or six, sitting in the hall in their wheelchairs. Some of the residents quietly push themselves around by their feet, but most of them just sleep sitting up. Some aides will just get their residents that early every day so they can get other work done after. If someone is working a double night shift and day shift, then they might just get all the residents on the hall up starting during the night shift, so they will have more work done early.

This is a decision that no one I work with would ever question, because you are getting your work done by the time it's supposed to be done. The day shift aides would probably even be pleased by a night shift aide doing this, because the person would be able to get more small things done on the hall before they leave. Basically a night shift aide who gets people up really early is seen as a competent worker who organizes their shift in a way that works for them.

You might be wondering what I think is so wrong with getting people up early. I mean I admit that in the grand scheme of things it's not exactly abusive and sleeping in a chair isn't going to kill someone, but to me it really shows how we don't put the comfort of our residents first or focus on what they want. I wouldn't mind if I had to get up and sleep in a chair in my clothes sometimes, but having someone get me out of bed to do this on a regular basis would be pretty annoying, especially if it was because they saw me as a task to get out of the way and not a person to be supported.

Anyway, I basically told my mom that this was something that my coworkers saw as a normal and harmless thing to do and it was an example of why I might not want to be an aide anymore. My mom told me that I was "very kind" but I should think about the practical reasons why people would have to get their residents up early. It is hard for me when people have to tell me I'm "kind" just because I am trying to think from the perspective of people I have a lot of control over, especially because it seems like a lot of people think that part of being competent or just being an adult is thinking about things only from your perspective and the perspective of people who have power over you.

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.