13 June, 2015

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.

12 June, 2015

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.

16 May, 2015

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.

16 January, 2015

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.

04 December, 2014

content warning for violence and racism

I don't expect this to change anyone's mind, because it is seeming to me that a lot of my fellow white people just don't care and refuse to acknowledge when an innocent black person is murdered by a white person for no reason. This isn't going to be a very good or original piece of writing, but I don't want to be silent about this either.

Mike Brown, Tamir Rice, John Crawford, Eric Garner, Renisha McBride, Trayvon Martin, and all the other black people who have been killed this way in recent months and recent years, were innocent people who did not deserve to die. The people who killed them were wrong and racist, as were people who defended their killers and the people who, in most of these cases, have allowed the killers to go completely unpunished.

Of course no human being is completely innocent. No one is an angel. This doesn't mean anyone deserves to die for being a normal imperfect human being, and attempting to "tell the other side of the story" by talking about the victim's drinking, supposed petty crimes, or social media posts is hateful. When people tried to defend George Zimmerman by showing that Trayvon swore and talked about sex on Twitter, all they did was reiterate how horrible Zimmerman's crime was by showing the average and infinitely complex young person whose life he cut off for no reason. Yes, Trayvon was "no angel," but only in the sense that he was a regular kid.

After Mike Brown was killed, the Ferguson police department went around looking for something that would make him look like a criminal. They have successfully convinced many people that Mike stole cigars from a convenience store prior to his death, and that he can be seen on video physically harassing an employee at the store. First of all, this wouldn't excuse his murder and it can't possibly have been the motivation for Darren Wilson to kill him, since Wilson could not have known about it at the time. But it is also unbelievable that Mike even did this. There is a video of Mike buying the cigars he supposedly stole and the store owner does not think that the person in the surveillance camera video is Mike. (There are sources for this in item 3 of this helpful master post about Ferguson.)

The situation with Mike Brown's "robbery" is very telling. It shows how if powerful people want to cover up a crime, they can find a way to make the victim look bad and they can make the public believe it. Not only are some white people already biased against black men, but when authority figures show the surveillance video and say it is Mike Brown, it can be hard to question them. It was hard for me to believe that the police were this dishonest in their attempts to protect a murderer--but they really were. The "robbery" brings home that any victim could be portrayed this way. Even if there existed a human being who was impossibly morally perfect, that wouldn't protect their reputation if they were a black person murdered by a cop. The facts could be twisted to convince the public that they were a bad person and somehow frightened their murderer into killing them.

Some of these victims had done illegal things in their lives; some had not; some were big and strong; and some were people who couldn't possibly have been physically threatening, like Renisha McBride who had just been injured in a car accident. But not only can some of these details be misrepresented, they are not relevant.  What these black murder victims have in common is that they didn't deserve what was done to them and their killers should have been unequivocally condemned by public opinion and the law. The fact is that over and over, their killers have been excused.

02 November, 2014

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.

22 August, 2014

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.