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.


 (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.


(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


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.

07 August, 2014

Soft and lovely your way to a better tomorrow!

Around the time I first started this blog (when I still used it as an all-purpose blog, which I don't now) I spent a lot of time posting about tattoos I wanted to get. The one time I got close to getting one, I freaked out. I woke up in the middle of the night freaking out to my friend who was visiting me and who I was going to get one with. Now I'm once again on track to get a tattoo--tomorrow, actually, now it's getting to be Tuesday--and I have been waking up a lot.  I don't sleep well these days, except when I sleep for ten hours, so it's probably not the tattoo that is waking me up.  Still I end up thinking about it at those times, and tonight sleeping seemed so impossible that here I am writing this in a notebook at a diner at 4 AM.  So, let's talk about my tattoo.

It is a Jenny Holzer line in the Jenny Holzer font (Futura Bold).  I sort of wanted this for a while so I just hitched my wagon to Zoe's Jenny Holzer tattoo getting star.  Jenny Holzer is an artist who in the 70s and 80s did a lot of work where she would put really intense sentences on places like movie theater marquees and billboards.

(A movie theater marquee that says, "Turn soft and lovely every time you have a chance.")

(A billboard that says, "Protect me from what I want.")

(A bench that says, "What urge will save us now that sex won't?"

At first, I wanted to get one of the sweet-sounding sentences like "TURN SOFT AND LOVELY EVERY TIME YOU HAVE A CHANCE" or "SAVOR KINDNESS BECAUSE CRUELTY IS ALWAYS POSSIBLE LATER."  I agree with both of these wholeheartedly.  Zoe is getting "IT IS IN YOUR SELF-INTEREST TO FIND A WAY TO BE VERY TENDER."  It is, but lately I've been mentally slanting meaner--not out of a hatred for the human species (well, maybe a little) but mostly out of fear of appearing vulnerable or, even worse, actually being that way.

I was looking up a longer quote which I would never want as a tattoo, "YOU CAN MAKE YOURSELF ENTER SOMEWHERE FRIGHTENING IF YOU BELIEVE YOU'LL PROFIT FROM IT. THE NATURAL RESPONSE IS TO FLEE BUT YOU DON'T ACT THAT WAY ANYMORE."  It fascinated and upset me because it reminded me of how I've felt in some situations, but especially during my abusive relationship. I often have delayed emotional reactions, which is creepy, but it's something that has served me well when working with populations who can be very upset or combative, such as people with dementia who are in a lot of pain. I've stayed soft, lovely, and tender to avoid adding to the stress that's causing them to lash out at me. It works more often than not.

When I began my abusive relationship, I fell into acting the same way with my ex. When she got upset, I stayed calm and comforted her. It failed more often than not; I stayed calm for so long that I carefully studied her arguments for why everything that happened was my fault. Here was a job with no off days, and pretty soon I no longer believed there was anything wrong with her behavior, only with the fact that I and other people were constantly upsetting her.

The last time I talked to her, she told me I was confused about what had really happened and that everyone she talked to said I had abused her and that she couldn't possibly have abused me.  I argued weakly and kept asking if I was upsetting her. She said, "Don't worry about making me upset. It's important for you to be able to tell me what you think." I said, "Thank you, that's so brave and kind of you," as by that point I was unable to say anything that seemed like it might upset her. We were talking online and I knew she was in a public place; she had told me before that if she got too upset in public she might be taken to the hospital, where they would certainly kill her. In retrospect, the kind of feeling is like a nightmare where you are being threatened and can't move, but at the time I both didn't say anything that could upset her, and couldn't even bring myself to all the way think it. It would upset her if I was scared of her, so I while I was with her, I believed I thought she was unusually pure, innocent, and gentle.

A while before we broke up, I had been sent to the hospital to keep a longtime client with dementia from pulling out his tubes when he woke up, hurting and delirious in a strange dark room. Usually he knew me and we were close, but this time he just screamed, "Oh, oh, oh no," when I tried to keep him from pulling his tubes out. As always, I moved myself to skate over my natural human response of being upset, and stayed calm and friendly. But something rose up and pushed against my lack of reaction, which suddenly made me feel sick, scared, and exhausted. It was like I'd overdosed on calmness and couldn't take it anymore, and of course I didn't show it, but I almost cried.

THE NATURAL RESPONSE IS TO FLEE BUT YOU DON'T ACT THAT WAY ANYMORE. Can't, even, when you are frozen into a peaceful form.

It's been hard to square my previous almost self-righteously soft and lovely tendencies with the level of paranoia I've developed upon breaking up with my ex. Just as an example, two interactions with men. In March 2013, I was waiting at a bus stop in the middle of the night.  There was another person at the bus stop and I usually have a mental block on Autistic-looking movement in public, but it was so late and I barely noticed him, so I suddenly found myself run-Forest-running a few yards along the sidewalk. The other person at the bus stop, a drunk black man, began yelling, "I could kill you right now and no one would hear you. You're so fucking racist! You couldn't get away from me anyway." I felt bad that he thought I was running away from him because he was black, so I went and tried to discuss the subject with him. "I'm just a drunk guy eating prosciutto," he said hilariously. (He was eating it in the plastic wrap, from Safeway.) He asserted over and over that a)I was running away from him because he was black, and b)there was nothing to stop him from killing me if he wanted to. Without yielding those two points, he calmed down and we talked about various other subjects until the bus came. I considered this a success and hurried home to pat myself on the back. This was par for the course for me for most of my life.

In June 2014, I was at church when a white guy carrying a bunch of duffel bags sat down next to me in the middle of the service. He asked me to watch his bags while he got water from the water fountain. When he came back, he started whispering unintelligibly to me. Soon, everyone got up to stand in a circle, and he edged his way around until he was behind me. I walked to the other side of the circle and he waited, then came over to where I was. When I took communion, he made sure to get in line behind me and whispered, "I'll talk to you after this."

My hips locked up with fear and hurt for days. At the end of the service, as the guy started to ask, "You come here often?" another guy asked me, "Is that guy following you?" I thanked the other guy and walked across the church with him, then bolted out the side door. I hurried home to think about how much I hate everyone (except the other guy), and also to wonder what the first guy was planning to do. If he didn't care that I was trying to get away from him, what other things did he not care about? What was in the bags? And why was it me--did I look like someone who wouldn't ask for help in a public place? Did I look soft and lovely, pink and very tender, like I savor kindness because cruelty is always possible later?

It is always possible later. I went through a period recently where I suspected my best friend was a very bad person, that everyone knew it, that I was just in denial because I didn't want to lose someone I loved. If I fooled myself before I could do it again, an infinite number of times. I had to really write down the mounting evidence against my friend to realize it consisted of completely mundane details.

Where are all my nice qualities, I'm trying to say. I shudder to think of them. I don't like to think of myself holding my ex, helping her, how devoted to her I was. I remember thinking: well if this is going to be my life, using all my time and energy to take care of her so she doesn't get upset--well, that's okay, I guess. Helping someone is a worthwhile thing to do. And if I can turn softer and lovelier, infinitely ramping it up, maybe I'll stop upsetting her so badly.

It wasn't just my attachment to her that trapped me, but my attachment to the idea of people, especially Autistic people. Autistic people are so ashamed of needing any help at all, I thought--she wouldn't be asking me for these things if she didn't really need them. I felt happy to do things for her when so many Autistic people I knew, including me, often went without help. Autistic people of course feel so uncertain about the legitimacy of our feelings, so she wouldn't blame me for upsetting her unless it was absolutely, irrevocably my fault. It's just weird to think of myself colluding with her, and makes me feel stupid. She didn't threaten to kill me or my family, or even hit anyone--so why did I go along with all her stuff? Just because I really didn't want to make her upset?

I am still very idealistic and spend too much time imagining how I could get other people out of headfucks like this, worrying my friends could be in one and don't know it and therefore can't tell me about it; concluding all I can do is be there to help anyone who does start to come out of one. And also, this, which is the Holzer line I found that hit me like a steak to the temple*:

(My tattoo on my arm which says, "You have a sick one on your hands when your affection is used to punish you." Done by Zack at Sacred Rose in Berkeley, CA.)

It's drastically absolving, which is just the way I like them. It is strange, because I have support from several friends, but what always sticks with me is anyone who thinks I'm exaggerating. Am I just being cruel to a crazy person who didn't know any better? Did I create the system that controlled me? She never came out and said most of the things I came to believe, and if she did, she said, "I never said that" or, "I didn't mean what you thought." It's easy to feel there was something weak and over romanticizing in me, that predestined me to get turned into the negative space around her.

Is there a way that someone could have made me listen to reason earlier? I'm not sure. I like the sentence because it is hard to decipher--a friend put it in clearer order, "Someone who uses your affection against you is sick," but as it is written, it doesn't immediately communicate anything but confusion. I like to imagine someone on the train half resting their eyes on my tattoo, seeing it for several minutes before they really concentrate on the words. Oh. And, oh.

YOU HAVE A SICK ONE ON YOUR HANDS WHEN YOUR AFFECTION IS USED TO PUNISH YOU. I like the construction because it positions affection as normal, which I believe it is. Believing a disabled person wouldn't lie about their disability? Falling in love with someone who presents herself as exactly what you want? Being loyal to someone you think is dependent on you? These are all pretty ordinary, common things; it's taking advantage of them that's uncommon. All this to explain how, for me, this line contains all the other, sweeter-sounding lines, and is actually the kindest of all.

22 July, 2014

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

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

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

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

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

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

Here are some of my pictures that I consider bad:

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

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


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

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

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

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

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

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

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