Uncanny Valley Blues

This is just a vent with no political or artistic import. Here I sit, watching my boss's dad Richard wait on the phone with Covered California, the Obamacare organization. For the last few years Richard has occupied the thankless position of being my unpaid, uncredited support worker in matters of bureaucracy. I can't manage them myself due to difficulties using phones, approaching long chains of tasks, and regulating emotions (i.e. when under a lot of stress I usually zone out and can't do much).

Medi-Cal (Medicaid in California) has decided to occupy themselves this holiday season by mailing me some forms and demanding that I complete them in a week or else. Now, I certainly am unable to do this--they're requesting tons of things that would each individually be something I could only do on the best of all possible days. I guess Richard could theoretically do it if it was an emergency, but it wouldn't be very realistic for him either since he has plenty of things to manage aside from tracking down copies of every insurance check I've mailed in the past year.

But aside from the general obnoxiousness, there's the small detail that I am not on Medi-Cal, nor have I applied for it. I exceed the maximum income limit, and I never seriously considered applying for it even when I made less money. Well, I thought about the disabled workers program, but then an Autistic friend applied for it and was denied for not having an intellectual disability, which is pretty much like telling someone they're not blind because they can hear. After that happened to her, I wasn't going to bother. That was years ago.

But for some reason I'm hearing from Medi-Cal because they want to evaluate me, even though I make too much money and they already have that information without me, i.e. Richard, doing any of this busywork they've assigned. After Richard sits on the phone with them forever, we find out that they sent me all these forms because I said I was disabled when signing up for insurance.

Let's review: according to the ADA, a disability is a physical or mental impairment that limits a major life activity. Check. My disability is also on the list of disabilities that can qualify you for disability if you cannot work, the working disabled program if you can, a disability bus fare, and so on. I've been diagnosed with autism twice and I have the paperwork. I'm not applying for any of these things, though, like I said, since I am not eligible for most of them and when it comes to other ones, like free bus fare, it would be a lot of work to pour into something that I might not get. But. I am, objectively, disabled.

A few years ago I used to get upset about the fact that I'm unlikely to ever qualify for any services for my disability. I'd get upset because of the practicalities--I have to recruit other people to unofficially help me, which is difficult for many reasons, not least because of aspects of my disability--but mostly because it was extremely overwhelming and distressing to feel like the reality of my life was being dismissed. I stopped talking and writing about this not because the situation or my feelings improved, but because I realized it was not helpful to dwell on something that made me so upset. Besides, I'm really lucky to have so many helpful people in my life, and that's what I should focus on.

And when it comes to Medi-Cal, I do not want it because I don't need it. I hadn't been at all surprised when the Covered California website said I wasn't eligible. That was the end of it. But apparently, a disabled person who isn't eligible for Medi-Cal isn't even allowed to exist and to just answer yes on a form that asks if I am disabled, just as I enter other information about myself like my gender and race. Instead, I have to be badgered with tasks I cannot even do for having the gumption to identify as disabled when the healthcare system doesn't consider me to be so.

Sensory Issues

Something like this happens:

1. I'm in college, in a psychology class, where the professor tells us that Autistic people don't care about other people. We only see them as objects to get something from. (She knows I'm Autistic and she's taught Autistic students before.)

2. A friend of my friend informs her that I will never care about her because I'm Autistic.

3. One of the most popular books in the world is about an Autistic character who doesn't care about people and wishes that everyone else in the world would die. I see people reading this book all the time, including people I'm close to, and it has been recommended to me so I can learn more about autism.

4. After a mass murder, I hear people speculating that the murderer must have been Autistic.

Something like this happens: my feathers are ruffled. I feel hopeless about life; I feel like I can't trust anyone. I want to confront the person who said something. I don't want to feel obligated to be nice to them. I feel betrayed if the person was someone I liked and trusted.

If I talk to anyone about this, most people respond calmly and cheerfully. Even close friends and family aren't hurt or angry on my behalf. They have no emotional reaction--they often seem a little bored that I've brought up something so trivial--and if they even intellectually condemn what happened, their focus is on telling me that it isn't so bad.

The person didn't mean it like that.

Well, a lot of people have that misconception about Autistic people. They just don't know any better.

I shouldn't be so sensitive. I should get over it.

They wouldn't think that if they got to know me.

Mysteriously, the last statement--a compliment--is the one that bothers me the most.

Why be modest? No one else is going to say anything good about me once they know I'm Autistic. So I'll admit that I'm a kind, caring person. It's certainly the way I am most often described by people who don't know I'm Autistic. As I leave a room I sometimes hear people exclaiming, "She is so sweet!" I always do my best to be kind and polite to everyone, I volunteer, and I've chosen to take care of other people for a living.

I'm pretty much as far from the Autistic stereotype as I could get. So yes, it is probably true that if certain people were forced to spend time with me, they would eventually have to admit that I care about other people, and maybe they'd even start to wonder if this is true for other Autistic people (but I doubt it; exceptionalism is a hell of a drug). Yet somehow this fact is completely inadequate and unsatisfying to me in every way.

For many people, there's a duality between disabled people--an abstract group--and the disabled person you know. People just cannot get their heads around the idea that ableism really does affect their disabled friend or family member. How can a nice pink-collar Manic Pixie Dream Girl like me possibly be affected by the idea that Autistic people are serial killers? I'm obviously not a serial killer if you get to know me!

The rub is obviously that most people don't know each other and that most acts of discrimination aren't committed between close friends or family members. I'm supposed to be comforted by the idea that my friends and family members know I care about other people, and completely desensitized to the fact that doctors, therapists, potential employers, police, judges, or jurors might think I don't.

Even if you put aside situations where I could be concretely hurt or disadvantaged because of those stereotypes, there's still the daunting task of having to convince new people in my life that I care whether they live or die. Specifically, the fact that it's completely horrible to assume I don't care about that; and the fact that I shouldn't have to prove something so simple; and the question of how, having proved I meet a minimum standard for decency, I'm supposed to settle down and be friends with someone who assumed I didn't.

I've been thinking about this whole thing a lot lately, and I do feel a lot more friendly toward these responses than I once did. I think, if people care about me, they think it is kinder and more comforting to believe that these things don't matter; that I'm just a cuddly Autistic snowflake floating around and those kind of ideas can't ever really hurt me. I am their friend, their family member. They know I'm a nice person (even if their ideas about Autistic people in general are negative) so everyone must know that I'm a nice person (even if their ideas about Autistic people in general are negative). I must be safe and equal; if someone cares about me, it feels nicer to think that I am just silly and oversensitive, than that I could actually face discrimination for being Autistic.

A Downer

It makes me feel really hopeless when things are always set up so you're only allowed to communicate about things in real time spoken conversations, and if you try to communicate in a different format, people get mad or just won't listen at all. I can't really do real time conversations about anything important because I can't process stuff or put together words fast enough, and it is really frustrating because if you write things, people automatically see it as much more formal and intense. So sometimes, writing is just not really allowed as a format for certain conversations.

It's not a big deal and I can figure something out in most important situations, but sometimes you just need to talk to someone you don't know that well about something important--but I have to choose between either not having the conversation, having it in a format where I'll be forced to agree with everything they say because I can't follow it, or offending the person by using what they think is the wrong format.

It's a downer.

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.

Breakupversary

It's Autistics Speaking Day. I think I only completed an ASDay post on the first year, 2010, and since I don't blog very often, I'm not sure if I would have decided to write one this year. As it turns out, I didn't even remember November 1 was Autistics Speaking Day, even though I've been watching November 1 coming for quite a while. That's because November 1, 2013, was the day I stopped being in an abusive relationship.

That was your trigger warning. I'm not sure if this counts as an ASDay post or not. It's aimed at Autistic people, disabled people, and to some extent, anyone who is part of a marginalized group and sees that as an important part of their identity.

I have written about my abusive relationship, and I have more to say in the future. What I have to say today is: I didn't know that an abusive relationship could feel the way mine did. I generally didn't feel scared of my abuser or like I was being hurt; instead, from the beginning of the relationship, I was afraid that I was abusing and hurting her. I saw her as a very weak, vulnerable person who I was obligated to protect, and even when I was really unhappy and wanted out, I didn't see it that way. I saw myself as being stressed because my girlfriend needed more help than I could consistently provide. Or, towards the end, I thought that I just was too disabled, or too selfish, or not disciplined enough, to do everything she needed.

It wasn't until after the relationship ended that I became afraid of her. When we were together, my perception of the world was so absorbed into hers that I didn't realize how little control I had over my choices, how afraid I was of displeasing her, and how little she cared about my well-being. It's pretty scary that her thoughts and opinions became mine, that even disagreeing with her in my head was really difficult; but naturally, I wasn't scared at the time, because I didn't have enough control over my mind to be scared.

A few times I cried uncontrollably for hours; I felt hopeless; I got sick. But I always traced it to sources other than my relationship. The closest I ever got was thinking that really bad things happened because I didn't respond to her the right way, and if I just did it better next time, things would be okay. I could handle her.

To be clear, my ex was also Autistic, and had various other disabilities. Her disabilities played a major role in why I stayed with her and was afraid to question the nature of our relationship. At the time, I had a few rationalizations for it:

1. It would be wrong to think that she might be exaggerating or lying about certain needs, or using her disabilities as an excuse for her behavior--even though that was clearly happening sometimes, I refused to consider it.
2. I should be loyal to her because she was disabled. It was right for me to stay with her and help her because disabled people should look out for each other.
3. If I didn't stay with her, she would be alone because other people didn't understand her disabilities and discriminated against her. She wouldn't get the help she needed, and she might even die. A few times she told me that because I had upset her, she might get institutionalized and they would kill her.

As comforting as it might be to imagine that she was faking or lying about her disabilities, that the person who did this to me wasn't Autistic--well, I knew her well enough to know she definitely is Autistic. I also know that it doesn't matter, that if she wasn't really Autistic, or wasn't really disabled, that wouldn't make this any better.

This is a friendly reminder that marginalized people can be abusive or dangerous just like everyone else; and that some social justice ideas are right most of the time, but have exceptions. You don't have to always agree with someone just because they are marginalized. If someone is obviously lying, you shouldn't just accept it because they are marginalized. Disabled people aren't usually lying about their disabilities or using them as an excuse, but it does happen, and you don't have to put up with it if it's hurting you.

Maybe most importantly, not everyone who shares an experience with you is trustworthy. Making Autistic friends was very important to me and I'm now at a point where most of my close friends are Autistic. That does not mean all Autistic people are my friends or have my back, or that I should have their back. This sounds obvious, but it's a lesson I've had to learn a few times, and I hope (maybe unrealistically) that I'll never have to learn it again.

These are some links I find helpful.

The Pervocracy--"Why does she stay with that jerk?"

Myths About Abusers

Off the Rails by Abbey Wilson--particularly the "Why I Don't Believe in God" series--one, two, three, four, five. Additional warning, this is about being in a cult as well as an abusive relationship. It's very different from my experience but for whatever reason, it was the first thing I read that I related to.

Trigger Warning: Breakfast

I like the writing of Lundy Bancroft (like this for example, and that whole tumblr has a lot of good stuff), but the big warning is that he basically doesn't believe women can abuse men. This is ridiculous and makes me uncomfortable.

Also, if you are in my situation, there might come a point when you should take a break from reading and writing about abuse, even if you think it's a good thing to do. It can upset you and make you paranoid; at least, it can for me. When that happens I make an effort to focus on other subjects for a while.

Round and round in my bed life

My life is pretty great. Let's talk about it. Okay, it's not the greatest life ever, but there are certain times of the day when I feel really satisfied. Last night I remember taking out my contacts, throwing them away, and reaching for my glasses; and feeling pleasantly surprised at how easy it was to do this. I used to take three hours to get ready in the morning and now I can take less than one hour--and that's not racing against the clock and working super hard to focus on what I'm doing.  I don't even use timers right now.

Around the beginning of last year, the idea developed that I could try to make my activities of daily living easier. I'd give most of the credit to the family I work for.  First of all, my job is so easy and fun that I can focus on things besides hating my life and being afraid of getting fired.  Second of all, Anna's parents are really organized. Of course I've met organized people before, but I was never in the right frame of mind to notice and appreciate it.  This time around, I was.

If I'm looking for pillowcases or paper towels or stacking cups or shoes, I always know where to find them in Anna's house.  Each pair of shoes even always goes in the same compartment in the thing that holds the shoes.  Her long-sleeved and short-sleeved shirts are in different places, and the long-sleeved shirts are divided into patterned and not.  Her hoodies are organized in such a way that you can identify them without unfolding them.  And a lot of things are labeled.

This makes everything more predictable, which is great. I decided that I wanted my living space to be like this, but even more so. Since I run into problems when I have to make decisions, I decided that I would do exactly the same things in exactly the same place when I was doing activities of daily living like getting dressed, putting on makeup, or putting in my contacts.  Over the first year that I was trying to make things easier, I realized that reducing the number of steps was even more important than making things predictable.  I decided to set things up so that I barely had to move to get ready in the morning and get ready for bed at night.  By the way, this might not make sense if you don't read my mush post first.

Right now my schedule is like this:

I wake up in the morning (usually before my alarm). I reach for my phone to see what time it is, and open my computer, which is on a large table next to my bed. I might check tumblr or something, and if I'm thirsty I drink some of the seltzer that I always have in my room. I have a recycling bin next to the bed for all my cans of seltzer. If I'm hungry, I drink a bottle of Ensure or eat a corn tortilla or some crackers, all of which I can reach from my bed.  Then I start up whatever TV show I'm watching right now.  I put in my contacts.  I throw the contact boxes away in the container I use as a trash can.  Then I reach for my backpack, which is at the end of my bed, and take out the Ziploc bag in the left corner pocket, which has all my makeup in it.  I sit on my bed and watch TV as I put my makeup on.  Then I put the Ziploc bag back in my backpack so I'll have makeup if I need it during the day.

My bed has bars which means I can hang a lot of stuff on it.  I usually have some clothes hanging on the end of the bed--all the clothes that have been worn at least once, but are okay to wear again (shirts and leggings=two days, pants=three days, skirts and hoodies=until I do laundry).  The other clothes are in my cubbies, which are next to my bed.  I have everything folded so I can see what it is.  I can just look at all the clothes and decide which ones to wear, and I can even reach my desired articles of clothing without getting out of bed, even though I might have to move to the edge of the bed to do it.

I don't brush my hair so I am now ready to go.  I pack my phone and my computer if I want it, turn off my power strip, and go to the other side of my room where my shoes are.  I put on my shoes.  Then I go in the bathroom, brush my teeth, and leave.

When I get home at night I usually just want to get in bed.  If I have something to do in the house, like put my frozen vegetables in the refrigerator or take out the trash, I look at my watch and promise myself it will take less than fifteen minutes.  After that I go in the bathroom, brush my teeth, and wash my face.  When I get in my room I put down my backpack, turn on the power strip, turn on my lamp, change into pajamas, do my *~Skincare Regimen~*, take out my contacts, and put on my glasses.

Bear in mind it's often like eight o'clock at this point, and I might not turn out the light and go to sleep until midnight.  But I've pretty much always fallen into bed and mushed out as soon as I've gotten home.  The difference is that for a long time I didn't accept that I would do this, so I would lie down with my clothes on and then spend the next few hours trying to get out of bed to brush my teeth and wash my face.  Obviously my mouth was 90% cavities and my skin condition was out of control to the point that I didn't want to wash it even when I had the chance, because touching my skin hurt so much.  Now things are a lot better!  Having a face that doesn't hurt is probably my favorite thing about life right now.

Aside from changing the way I do stuff at home, the most important ADL decision I've made was about what not to do at home, i.e. cooking and eating.  This was a hard decision to come to because I grew up thinking of cooking as something that is part of being independent.  My parents had enough money to go out to eat a lot, so we did, but they would cook at home a lot too.  I felt proud when I learned to cook some simple meals by myself.  Over the first two years after college, I made my own meals the majority of the time and was slowly learning to make more and more things.  I didn't make anything complicated, but I enjoyed the food I made.

But even though this sounds like a nice progression to independence, I realized that it wasn't benefiting me.  The problem isn't really the time and energy involved in cooking, although that is usually a lot more time and energy from me than it would be from someone else making the same thing.  It does take time but it's sort of fun and I guess it often takes me the same amount of time to travel to my favorite diner....where I'm writing this right now!!! I love you Lucky Penny!!

I bet you would never have guessed I don't brush my hair, right.

Anyway, sorry for the derailment but the main problem is actually dishes.  I don't think anyone finds dishes fun and easy to do, but for me because eating is a more relaxed, mushy activity, it's really hard to go from eating to doing the dishes.  If I eat by myself in my room instead of with roommates, then I get even mushier and end up falling asleep surrounded by an army of dirty dishes.

It is fun to imagine a fantastical universe where some amount of planning or prioritizing could lead me to do all my dishes all the time, but I don't think that is realistic, at least not at this point, and I feel like it's contributed to me being unhappy when I live in a gross, cluttered house full of ants (which happened in the first place I lived after college) or my roommate is always justifiably upset with me for not doing the dishes (which happened in the second place).

It was a major load off my mind when I started going out to eat by myself.  I had almost never done this before, and it can feel like a weird thing to do at first, but it's super great.  Before I started going out to eat I would often get takeout when I felt like cooking was too hard, but this wasn't a good solution because I still had dishes.  When I go out to eat I don't have to focus on anything before eating (getting groceries, cooking, etc.) or cleaning up anything after.  There are clear delineations for when the meal starts and ends.

Even more importantly, it replaces something that was a source of problems with something that makes me really happy.  I love going to diners and cafés, not just because I can eat something that would probably be too hard for me to make myself, but because I like the experience of being there.  It's similar to riding public transit--since I'm dressed and out of the house I'm pretty alert, but there isn't anything I really need to focus on, so I can use my alertness for whatever I want.  I can read, write, and listen to and observe people around me.  This is something that makes my life better at any time of the day, but it's especially nice to start the day like that.

In fact, my initial motivation for going to diners and cafés was happiness, not doing the dishes.  This was because I had a realization about the Stamford Museum and Nature Center.  SM&NC is a place where I spent a lot of time when I was growing up and have a lot of memories of.  My parents brought me to lots of classes and events there, we would volunteer at events, and my dad and I led a hike there every fall for about 19 years.

My priorities in adult life have pretty much always been: 1)survival (getting up in the morning, going to work, eating), 2)lofty goals (writing, reading, having meaningful relationships), and 3)short term pleasure (sleeping, mushing out, or anything else that takes no effort to do).  But last year I came to the pretty obvious realization that SM&NC wasn't just automatically part of my life--my parents had decided that it would be fun to be involved there.  This is why people do things that take effort and don't seem to have an obvious benefit, like going on vacation.  It actually is a good feeling to plan and make time and put in effort just to do something fun.  It's also a different kind of fun from falling into bed at night or running into Walgreens to buy candy on the way to work.  You can enjoy it more if you scheduled the fun.

Obviously, these are just the things that have made me feel better and function better this year, and won't necessarily work or be affordable for other people.  But I wanted to explain and share them in case they could give other disabled people some hope about making daily life easier.  Seriously, I feel way happier and my face doesn't hurt, and that's quite a thrill.

Mushballing

Sometimes I try and come up with new frames to explain the decisions I make (or not-so-voluntary things that people think are decisions).  Sometimes this is for other people but more often it's just so that I can be okay with myself.

Today let's talk about being a mushball. I am a mushball.

If you want to know what a mushball looks like, take a piece of soft bread, squish it into a ball, and get it wet.  That is approximately me.

• droopy
• doesn't react to new situations
• doesn't like talking
• is not up for reading anything difficult or unfamiliar
• probably isn't good at writing, either
• likes to eat, read simple things, and watch TV, while propped up with pillows so it doesn't have to suffer the indignity of trying to sit up on its own

Actually, if you know me in person this might not be your impression of me! That's because I can usually corral myself if I have to be around people or do tasks that I need to focus on.  I'm glad about that because a full-time mushball life would be boring (I also would not be able to have a job or anything), but I still need to return to my natural mushball state or everything gets totally out of control.

Being a non-mushball (like if I am going outside or interacting with anyone in person) kind of feels like being in crisis.  It feels like have to tense every muscle in my body so I can be alert and anchored in time and try to respond to everything that is going on.  It's not really that bad, but trying to be tense and alert permanently would be the same as trying to stand up forever.

When I've been in situations where I can't mush out for really long periods of time (like when I was working 12-hour shifts with a 4-hour commute) what happens is just that the mushiness spills into everything.  Like, usually mushballing happens when I'm by myself in my room, and the rest of the time I'm more or less tensed up.  If I don't have any mush time, then I end up being mushy in situations where it's problematic and could even be a danger to me or other people.

So, mush is important is what I'm saying.  But not mush is important too.  It's depressing and not very satisfying if all I do is lie in bed, eat, and not talk to anyone, but if I stay at home that's probably what is going to happen.  It feels like my body hoards mush time and is pulled toward my bed like a magnet, although it probably has more to do with cueing.  If there are cues making me feel like this is mush time, then my body/brain aren't going to be ready to tense up.

• dressed = non-mush
• pajamas = mush
• in my room = mush
• outside = non-mush
• speaking = non-mush
• makeup = non-mush
• contacts = non-mush
• glasses = mush

This explains why certain things upset me and make it hard to focus, like talking on the phone in my bedroom or going outside without makeup on.  I had a lot of trouble a few years ago because my eyes were being irritated by my contacts and I was supposed to wear glasses all the time, but I just couldn't do anything very well when I was wearing glasses instead of contacts and started having mental health issues because I was so frustrated by my inability to do things.

I feel like a lot of people must feel this way to some extent, because they go to coffee shops to work on the computer or to study.  I think it's more extreme for me, because people don't seem to understand some of the aspects of my mush situation, but I like to use coffee shops for the same thing.  Something that I'm trying to address these days is how to keep as much mush time as I need, while making sure that I have free time that isn't mush time.  I want to have free time when I am alert and can really devote myself to things I'm interested in, instead of just floating.  I'm trying to spend some time alone at coffee shops and diners whenever I have a day off.

This brings me to the original subject for my post, which is that I've made a 2014 resolution to never prepare food for myself in my house.  If I'm eating with my housemates that's an exception, and so is if I'm not doing well and need to have a full mush day.  But otherwise, preparing food at home just leads to me lying in bed, eating super slowly and spacing out, sometimes eating way more than I intended to because I don't want to get up to put the food away, and finally surrounded by a bunch of dishes that I'm too mushy to take care of.  It's gross and depresses me.

I wanted to write about my resolution because I always get the message that going out to eat and not preparing your own food is lazy and a waste of money.  To me, it isn't laziness because it prevents mushy eating.  In the short term, it definitely costs more money--I can't afford to spend more than $14 a day on food and it's hard to keep to this eating out, whereas I could easily spend much less if I was only eating at home.  But I feel like it's worth feeling better, and it also has meant that I never get food delivered anymore, which was even more expensive than going out to eat.

Anyway that's all I have to tell you, and now it's time to return to that of which I speak.

Away From Home

warnings: abuse, suicide, supercrippery

What is a supercrip?

I use the word supercrip a lot (though not as much as I used to) and it has a very specific meaning for me.  For some people, the word supercrip just means a disabled person who is successful or heroic, but usually it has negative implications.  Often the term refers to a media stereotype of a disabled person who “overcomes their disability,” especially by playing sports, and becomes an inspiring example for kids who don’t want to do their homework.

For me, supercrippery isn’t about how other people see me, but how I see and treat myself.  My definition of supercrippery has to do with putting a non-disabled picture of success ahead of your own safety and happiness, including placing yourself in physical and mental danger so that you can resemble this picture as much as possible.  For example, if you do things slower than average, you might decide to deprive yourself of sleep so you can be as productive as a non-disabled person.  Obviously, making this decision requires you to have a lot of self-hatred and to feel that you don’t deserve to have your basic physical needs met because you are impaired.

I’m doing well now but when I am having more mental health problems supercrippery is a huge part of my life.  This post actually isn’t really about supercrippery but I want to explain what it is and tell people that if these ideas are triggering for you or make you really upset, you might not want to read the post.  The post is actually going to be about comparing disabled young adults’ life trajectories to each other, but I feel like this kind of ties in to supercrippery because it is usually comparing people to each other based on how well they fit a non-disabled standard of young adulthood.

Bella and Sandra

You know I love my fake names, so let’s have two disabled girls who go to the same high school.  No one’s disability is exactly the same as someone else’s, but Bella and Sandra have many obvious things in common (I choose these particular traits because they make Bella and Sandra easy characters to write):

1. They both are diagnosed on the autism spectrum
2. At some point they both receive treatment for self-injury, anxiety, and depression
3. Adults who meet them always comment on how intelligent they are
4. but they get Cs and Bs in school, to everyone’s consternation

That was in high school.  Over the next 7 years, this is what happens:

Sandra goes away to the best college she can get into, graduates in four years, and starts a career.  (Let’s say she becomes a teacher and is working towards a goal of becoming a school administrator.)  She lives a few states away from her family.

Bella goes away to the best college she can get into.  In her first year, she takes a medical leave because of mental health problems, comes home to her parents, and never returns to that school.  Six months after that, she starts occasionally taking classes at the community college.  She completes a few classes but hasn’t earned a degree.  She gets a job at the grocery store and at age 25, she is working at the grocery store and has no plans to move out of her parents’ house.

Most people who look at this situation will either make a judgment about disability, or about people’s moral qualities.

Judgment about disability: Sandra is more “high functioning” than Bella because she lives away from her parents, has a college degree, and has what’s considered a better job.  Bella’s disability is more severe.

Moral judgment: Sandra is hardworking, brave, motivated, etc. and “overcame her disability” by putting in effort and really caring about living independently and having a job.  Bella is unmotivated, directionless, lazy, scared of the world and of growing up, and is “using her diagnosis as an excuse.”

Moral judgment of their parents: Sandra has “tiger parents” who pushed her to succeed and didn’t let her use her disability as an excuse.  Bella’s parents failed her.  They babied and coddled her and now she doesn’t have the skills she needs to be an adult.

Actually, when I say “most people,” maybe I should say “me”--I’ve always compared myself to other young adults with similar disabilities, and I’ve always agonized over what makes one person more conventionally successful than me, and another person less conventionally successful.  If they drop out of college and I don’t, is their disability more severe than mine or am I more dedicated than they are?  If they work 80-hour weeks and I don’t, what’s wrong with me?  Why can’t I be like that?

A few days ago, I realized why.

Seven Possible Reasons They Turned Out Differently

1. Sandra’s family is abusive.

Let’s say that in their first year of college, Sandra and Bella were both really stressed out, this triggered a depressive episode in both of them, and they both attempted suicide but were stopped by a friend.

Bella decided that she wasn’t ready to be a full-time student and live without the supports her parents gave her (meals, reminders about when to do chores and how to take care of her hygiene, help with scheduling doctors’ appointments, and emotional support).  She decided to go home, focus on managing her depression, and try to identify and avoid situations where she might become suicidal again.

Sandra’s friend encouraged her to take a medical leave, but he didn’t understand.  She was extremely grateful to be at college because for most of the year, her family couldn’t hurt her; and because she was talking to them less, some of the things they had taught her started to unravel.  She realized that the things they had done were really bad and weren’t things she had brought on herself.  If she could live away from her family, she realized, she could fill her life with people who didn’t hurt her.

Sandra felt like if she went home she would get more suicidal, not less.  She also felt like being away from her family was worth the risk of dying.  So Sandra made her friend promise not to tell what happened, and she did the best she could to hide her depression so she did not get suspended from school for bad grades or being “a danger to herself.”

If it’s really dangerous or painful for someone to be at home, then that is a big factor in how determined they will be to live away from home.  For example, if someone regularly forgets to eat and is in danger of starving if she lives on her own, it’s safer for her to live with her parents--unless one of her parents has tried to kill her.  Then she doesn’t have any safe options.

2. Bella’s parents have more money.

Bella gets along well with her parents, but she doesn’t particularly like her hometown and dreams of living somewhere else.  She also wants to be a vet tech and she is taking classes, but school is really hard for her.  If she takes a full load of classes, it occupies so much of her energy that she isn’t able to spend time with friends, sleep and eat properly, and play music--things that are really important to her happiness and emotional stability.  Instead, Bella is taking one or two classes a semester because that’s a better speed for her.

Sandra also gets along well with her parents, and also is not able to be very healthy or have a social life if she is a full-time student.  But her parents struggled to support the family when she was in high school, and they can’t afford to keep supporting Sandra.  She goes to a college that offered her a scholarship, and works in the summer to help pay for expenses the scholarship doesn’t cover.

Sandra feels like she works all day at college, struggling to keep up with her non-disabled classmates.  She’s also really lonely; she has to say no most of the time when people ask her to hang out.  She usually eats Doritos and coffee for dinner while studying in the library, and when she sees groups of friends walking to the dining hall together, Sandra feels like her life is empty.  But she has to be able to do this--for one thing, her scholarship won’t pay for more than four years of school.

3. Their hometown is mostly white and Sandra is black.

At best, Sandra feels like an outsider because her family is one of the only black families in their town and she’s barely had any black friends.  At worst, white people have threatened her.  One reason college is exciting is because there are more people of color; she makes friends who share her experiences, she gets involved in anti-racist organizing, and she feels more accepted and safer than she did in her hometown.  Even when she’s having mental health problems, she doesn’t want to go home and feel the way she felt there.

Sandra also really wants to be able to support herself financially and live independently so that after college, she can choose to live somewhere where she doesn’t feel scared and isolated.  Sometimes it’s really hard for her to make it through the day, at college and after college when she’s working as a teacher.  But it’s worth it.

Bella is white and does not have this concern.

4. Sandra falls in love.

In her first semester of college, Sandra starts dating a guy named Ed.  She continues dating him for the first year of college.  In her second year, Sandra becomes extremely depressed, and Ed ends up in the role of her emotional support person.

Sandra really doesn’t want to go home to deal with her mental health problems, because right now, Ed is the only thing that makes her at all happy.  Ed loves Sandra but he isn’t super comfortable with being the only thing that makes her happy.  He encourages her to at least try to deal with her depression even if she isn’t going to take a medical leave, and he helps her go to therapists, try medication, and do other things to improve her mental health.

When they’re juniors, Sandra and Ed start living together off-campus.  Sandra has problems with multi-step tasks like cooking food and cleaning; and she also has dyspraxia which makes it hard for her to do some household chores.  Ed understands this, so he always does the chores that Sandra can’t do.  They work together to make charts and other reminders to help Sandra with multi-step tasks.

After college, Sandra and Ed get married.  They move to the city that Ed is from, where his parents live.  Ed’s parents love Sandra and treat her like their own daughter.  They’re both teachers and Sandra often asks them for advice when she is having problems at work.  Sandra tells them she is overwhelmed by the idea of finding a GP, dentist, eye doctor, etc. in the city, and Sandra’s mom finds them for her and even reminds her to make regular appointments.

Bella would like to move away from her parents--they’re nice, but they annoy her sometimes and she really wants to live somewhere that isn’t so hot in the summer.  But how can she possibly do that when she can’t even make a bed by herself and often gets confused when trying to cook basic meals?  What if she moved far away and her job was too hard and she didn’t know anyone and didn’t have anyone to talk to?  What if she was too stressed out and confused to ever find a doctor or remember to make appointments, and she got really sick and didn’t even know about it until it was too late?

She wants to do it, but she just can’t.

5. Bella is really happy living with her dad.

Sandra likes her parents just fine.

Bella and her dad are extremely close; they have long conversations about absolutely every subject, and they share a lot of the same interests and values.  She even thinks he might be Autistic too.  Bella’s mom left when Bella was three, so she and her dad have had 15 years to learn to function as a unit.  As Bella got older, her dad encouraged her to help out around the house and things gradually developed so that they both were taking care of housework fairly equally, each doing the things they were best at.

It was really important to Bella to do well in college.  Everyone said she was super smart and she wanted to defy the negative expectations people had of her because she was Autistic.  But when she went to college, it was really hard for her to live in a dorm instead of living the way she was used to, and the workload was too much for her.  She started having panic attacks and shutting herself off from her new friends, and when she started to fantasize about killing herself, she knew she had bitten off more than she could chew.  She needed to go home and be in her regular house and spend time with her dad, who she could talk to about what had happened and figure out when she would be ready to go back to college.

But after going home and after a long time of trying to be ready, Bella realized that she wasn’t ready and didn’t want to be.  She loved her town.  She still had some good friends who lived there--and her best friend was her dad.  She didn’t want to move away from her best friend just because adults weren’t supposed to live with their parents.  She and her dad got along well and were a good household.  Now that she had decided what she wanted, Bella tried to think about what, if any, plans she should make for the future.

Bella has decided that she wants to work part-time at the grocery store; it gives her days a good structure and she meets new people.  She also is taking classes so that she can have a higher-paying job in the future, but she isn’t pushing herself that hard because there’s no immediate need.  But if her dad becomes sick or disabled when he’s older, Bella wants him to be able to keep living in their house and not have to go into a nursing home if he doesn’t want to.  He’s always supported her choices and she wants to be able to support his.

6. Sandra is a supercrip.

When Sandra was a kid, she could tell that people thought less of her because she had disabilities.  They didn’t expect her to go to college and they didn’t expect her to be able to drive and they didn’t expect her to be able to live on her own, or get married, or have a high-paying job.  Sandra hated the way those people looked at her and she grew up feeling like the only way to be a worthwhile person was to accomplish all the things they thought she couldn’t do.

When Sandra is in college, she puts her academic success ahead of everything.  So what if she works slower than the other students?  She’ll just stay up all night several nights a week so she can get work done.  She doesn’t really need to eat regular meals either.  She doesn’t deserve to eat regular meals if she can’t do as well as the non-disabled students.

Sandra avoids talking to her parents because they always get really worried.  They ask her if she has any friends, if she likes the campus, if she’s taken any time off from schoolwork to just relax.  When Sandra explains that she doesn’t have time to do that because she’s not as smart as the other students, her mom asks Sandra to come home for Thanksgiving.  They’ll pay for it.  But Sandra wants to stay at school over break so she can get ahead on the reading.

Sandra’s mom says she really just wants Sandra to come home for a while so they can take care of her and she won’t have to be so tired and stressed all the time and can get some sleep.  Sandra tells her mom that she is fine and she’s 19 now which is old enough to act like an adult.  If I’m 19 and can’t be an adult, I don’t deserve to be alive, she thinks to herself.  This is Sandra’s mantra.

Sometimes Sandra thinks about killing herself a lot.  She’ll wake up feeling like it is going to happen that day.  But she would never tell anyone about this, because they would force her to take a medical leave.  Sandra would rather die than not graduate college in four years.  So she might as well keep going whether she dies or not.

Bella doesn’t have this attitude; she feels like she deserves to sleep and eat regularly, and she would definitely rather take a medical leave than die.

7. Sandra is extremely beautiful and charismatic.

This gives her an advantage because a lot of people really want to spend time with her and do things for her.

Bella is an average girl with average charisma and can’t “overcome her disability” because she doesn’t receive all the support that Sandra does.

And so on.

Golly Sandra, you’ve grown up really crazy

When I was in a Sandra #6 situation, I would get super angry at disabled people who took leaves from school.  Like, I would hear about someone I didn’t even know taking a medical leave because they had a panic attack and I would be like, “Fuck him!  I almost killed myself this morning and I still went to class even though I was crying too hard to see the Powerpoint.”  I would start being mad at the person for doing something that I thought was weak and immoral.  Didn’t they know that they should try to do things as well as everyone else?

Obviously being mad at people for taking a medical leave isn’t a sign of a really well-organized mind, but I don’t think I realized until recently how disorganized that anger was.  The reason I was fixated on these people wasn’t because they were doing something bad, but because they were doing something good.  They were caring about themselves.  Even if they prioritized a non-disabled version of success a whole lot, there was a certain extent of suffering that they weren’t willing to go through.  They didn’t feel like they deserved to die for being disabled--or if they felt like that, at least they knew they were wrong.

I wasn’t feeling superiority, I was feeling inferiority--I was jealous of them.  They valued something more than looking “normal,” being “smart,” hitting “milestones” at the same age as non-disabled people.  Maybe they had friends at home so they wouldn’t be isolating themselves from everyone if they couldn’t stay at school.  Maybe their parents wouldn’t be disappointed in them and say they should have worked harder, been more organized, taken medicine they didn’t want to take.

I’m hesitant to write about this the way I am, because of the power dynamic.  People like Bella are judged so much.  People see it as a failure for a young adult to live at home, and for a disabled young adult, living at home can seem like the fulfillment of lifelong low expectations.  But in every scenario I wrote, Bella is making really good decisions.  She may not be a success if the goal is to imitate a non-disabled person, but she is prioritizing her happiness and safety and she has goals that she can accomplish without ruining her life (and imitating a non-disabled person will make your life empty even if it doesn’t kill you).

In the supercrip scenario, Sandra isn’t making a ton of sense, but in a lot of the scenarios she is making good decisions too.  In some of the scenarios she isn’t receiving adequate support to make it through college or live on her own, but going without support is the lesser of two evils.  In other scenarios, like the one where she falls in love with Ed, Sandra is really lucky and support falls into her lap, so she loses nothing by living away from her parents.

In most of the scenarios, Bella is able to live with her parents because she has an advantage that Sandra doesn’t have--she is white, she has more money, her parents aren’t abusive, she doesn’t hate herself, etc.  In other scenarios, Sandra is able to live away from her parents because she has advantages that Bella doesn't have.  If Sandra and Bella are still friends at age 25, maybe Sandra is jealous of Bella because she feels like Bella had more choices.  But Bella is probably pretty jealous too because society judges people like her and wants her to feel worthless.  She also doesn’t have the freedom that Sandra has.

Depending on the scenario, one of them can often be considered better off than the other, but only a few of the Bellas and Sandras are really happy with their lives.  This is because, bar extraordinary luck, a lot of people with disabilities like Bella and Sandra are not considered to be entitled to support in living.  They have to choose between living in bad physical and emotional condition so they can be free (and seen as a success), or living with parents, or getting in a relationship with someone who is willing to help them, or just ragequitting the whole thing.

The choice they make is determined by a whole lot of factors, and two people with exactly the same abilities can make totally different choices without either of them making a bad choice.

(I wrote this post in July and didn't end up posting it because I wanted to nitpick it but I ended up not doing that.  My friend had said that in my posts, I presented all the Bellas as really smart for choosing to stay home.  I know there's plenty of bad reasons to drop out of college but I don't really feel the need to enumerate them because dropping out is so stigmatized and everyone assumes it's being done for a bad reason, while disabled people who graduate college are idealized.)

when loving your enemies is hating yourself

Some more about the stuff the other day.

I think having compassion or trying to understand someone's point of view is a luxury.  Well, luxury is the wrong word but I mean it should never be your first priority in a conflict.  Other things are more important, and compassion/seeing other people's point of view should only be attempted if other things are there first.

Lia left this comment on my pop culture blog where I had reviewed a glurgey YA novel about bullying:

"i can say this as someone who often tries to cope with things by being sort of detached but also outwardly optimistic and upbeat even if i'm not really feeling that way, it's not actually desirable or emotionally healthy to react to everything that way. a person who acts like that in response to bullying in real life is still going to be affected by the bullying, but they're more likely to turn their feelings about it inward on themselves. instead of (rightly) getting angry at the bullies, they might get angry at themselves for being bullied, for being unable to stop the bullying, and for being angry/upset about anything in the first place. sometimes these are people who have been taught, or have decided, that it's morally wrong to feel or express negative emotions. sometimes these are people who can react really calmly to being mistreated because they are very used to it and honestly believe that they deserve it or that it's normal. and that's less inspiring than it is depressing."

Lia is pretty stellar.

My mom has been visiting me and tonight we were having dinner with the family I work for.  We got on the subject of different illnesses and injuries I had when I was a kid and how usually people did not realize what was going on because I didn't have the level of distress they were expecting.

Not having enough visible distress is something I really hate about my life, to the extent that I've always assumed it was some kind of trauma reaction.  There's not really a ton of evidence for this so it might just be that I'm projecting/imagining that because it has been such a bad experience for me.  It's obviously been going on since I was really little so the list of possible traumas is pretty narrow and it's nothing obvious.  Also, it is a common problem for people with autism so it's either that it results from a traumatic experience that a lot of us have, or it just is part of autism.

In addition to less visible distress I also have more trouble noticing and identifying my feelings than other people do.  To make things even more annoying, I sometimes develop obsessive fears about having certain feelings and because my feelings aren't very concrete to me in the first place it can be really easy for me to get convinced that I'm really feeling those things just because I'm worrying about feeling them.

I really confused someone recently by talking about how far I'll go to avoid situations where someone downplays my disability or refuses me services.  I basically have chosen not to ever pursue any kind of services because if I was not able to get them, I would get too upset, and to me that's more important than a chance to get help I need.

I guess it doesn't make that much sense to other people why it affects me so much if someone doesn't think I have a significant disability*, even if the person isn't a close friend or someone who has a lot of power over me.  The reason it affects me is that I don't feel secure/distinct about my disability but it's very important for me to know that I'm disabled in order to manage and cope with my life.  I surround myself with people who either support this, or don't talk about it.  If someone says that I don't have a significant disability then that idea is introduced to my brain and even if I know the person isn't that smart or doesn't know me that well, it introduces a lot of doubt and I start seeing myself as a liar and a faker and can become suicidal or otherwise be affected in my day to day life.

*(I know some people use the term "significant disability" to mean a "profound" disability like my boss has, but I'm literally using it to mean a disability that is significant, i.e. it affects my daily life in a lot of major ways even though I can work, talk, etc.)

If someone says I'm not disabled or says something else that demonstrably isn't true, but would be threatening to my quality of life if I believed it (for example, saying that the family I work for hates me), I immediately want to remove myself from that person and see them as an enemy.  I don't want to engage with the person about this or even think to myself about why they think what they do or why they said it to me.  If I think about it too much, I will definitely start believing it so I just have to be brief and rational--it's not true, they were wrong, it's a harmful idea, and I'm rejecting it and the person who introduced it.

By the way this can be pretty unfair because someone who is perfectly nice might just make some uninformed statements about my disability or something else, and they might even see their mistake if I just talked to them about it, but I can't talk to them because I can't risk being convinced by them.  If I did talk to them, it would be very brusque to just give them the information about why they're wrong in case they want to think about it, and then end the conversation.  I probably wouldn't do this with most people, because it obviously seems mean and hurtful, but it's the only way that I would be able to engage without potentially hurting myself.

I'm going a bit off track here--the original thing I was thinking about was being secure in knowing when someone has hurt you, and being secure in the idea that it's wrong for someone to hurt you.  Some people are secure in this and some aren't including me.  In my opinion, if you are like this and immediately attempt compassion (or you encourage someone like this to immediately attempt compassion), what is really happening is that the person could hurt themselves.

For example, let's say Emma and Shirley work together.  Emma is very brusque with Shirley, makes fun of the way she walks, talks, and looks, never thanks her for anything she does, and is patronizing.  Shirley is hurt by the way Emma acts and finds it to be insulting.  She doesn't like Emma because of it.  Shirley decides to try to see the good in Emma and treat her well even though she doesn't like her.

On the other hand, let's say Shirley never gets to the point of being insulted and not liking Emma, even though Emma is treating her disrespectfully.  Trying to be compassionate, Shirley always makes excuses for Emma or tries to think of reasons that she has done something wrong to provoke Emma or reasons that she is wrong to be upset by the way Emma acts.  When Shirley has negative feelings toward Emma she tries hard to make herself feel the opposite and see Emma in the most complimentary light.  Shirley works so hard to be nice to Emma that she comes off like she particularly likes her, even though Emma is extremely rude.  I have been in this situation a few times and I think it damages me when instead of focusing on seeing that someone is treating me badly, I focus on seeing the good in them.

I have to assume that most people (or at least people who have tried to encourage me to be more compassionate/educational/thinking about other people's feelings) take it for granted that they will see it as wrong for someone to hurt them and that nothing can change that.  Then when they talk about compassion, maybe it's like they're skipping the foundation that should be in place; they always have it so they barely notice it and don't mention it.  But to me, because the foundation isn't there, they're advocating something quite different.

Without the foundation, loving your enemies is just hating yourself.