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.

Services

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

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

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

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

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

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

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

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

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

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

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

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

Time gets scarier

I watch a lot of TV and by the standards of TV I have a really good life.  I have perfect friends and a job I love, and I even have someone I’m in love with.  These are supposed to be the important things.  Fiction doesn’t concern itself with getting dressed, eating regular meals, and showering, except incidentally.  These things are supposed to be so boring that they blend into the background but these supposedly boring and insignificant things are making my life suck.

When I was growing up all I wanted was to be grown up and live on my own.  Mostly I wanted to be out of school so I could be in places I chose and do things I chose, and especially so that I could meet people I could actually date and be friends with.  When I was 17 I would struggle to make a list of anyone I considered a friend even slightly.  Now I can’t imagine worrying about that, but I’m constantly nostalgic for being 17 because I didn’t have to pay attention to where I was, what I was going to eat, or what I was going to do.  When I was 13 I couldn’t make it through the day without being told I was an ugly freak who should kill myself, but I had unlimited mental freedom to read books, write stories and songs, and experience everything as intensely as I wanted.  Now that I get to have friends and not be bullied, I spend half my time wondering if it's worth it.

For one thing, I don’t read or write much anymore and I read much slower than I used to.  I think it’s because I have to keep myself a little detached from everything.  If I do anything too much, I might forget to sleep, eat, wake up, go to work, etc.

My relaxation activity (which takes up more or less of the day depending on how stressed I am, but always takes up a lot of the day) is to sit propped up with pillows, reading multiple things on the Internet at the same time, sometimes gchatting with people, sometimes making short tumblr posts, and sometimes watching TV in 2- or 3- minute intervals.  I usually do this with an online timer open so I know how much time is passing (even if I’m not planning on stopping in an hour it’s still good to know that an hour has passed).  I eat a lot of my meals during this and in the morning I usually get dressed and put on makeup without getting off the computer.

It might seem like it would be more relaxing to sit and read a book but it actually would be stressful because I could lose track of time.  Once when I was little I remember crying because I accidentally read all day and it scared me that so much time could pass without me knowing it.  But at least back then someone would find me if this happened.  My housemates are nice but keeping track of me isn’t their job.  Anna’s parents would call me if I didn’t come to work but by then I would already have done something wrong.

When I clean, do dishes, or do anything that can’t be done while sitting at the computer, I watch TV or listen to a podcast.  Otherwise I won’t be able to focus because I’ll be afraid of spacing out.  If I watch TV or movies with other people, I get stressed if I don’t do something else at the same time.  But it makes everyone feel weird if I’m on the Internet so I try to eat, drink, or play handheld video games.

I stopped driving because I was a bad driver and I was suicidal then, which was a bad combination.  But I’d be hard pressed to start again even if I could learn to be an okay driver, which I admit is possible.  Riding the bus or train is the only time I can actually read a book or write something important or just experience what's going on around me or in my head.  The bus always goes the same places and I don’t need to work hard to know when the ride is over because I ride it every day.

(Cross country Greyhound trips are a spiritual level experience for me because the ride doesn’t end and I don’t have to focus on anything practical for days.  Even if I arrive dirty, hungry, sick, and tired, I’ve still gotten to space completely, for long enough that I stop even feeling nervous about it.  Sometimes during the Greyhound ride I end up figuring out something or writing something I've been wanting to do forever.)

But I’m not intending to say it’s hard to work, do laundry, eat regular meals, sleep, shower, get dressed, and put on makeup.  A lot of people can’t do those things without parents or staff and here I am doing them consistently, so by definition it’s not that hard for me.  It happens.

What doesn’t happen is all the less immediate things.  For example, to cash my paychecks I can either get up early on a work day or go to the bank on one of my one or two days off a week.  I mean to do this almost every day but it usually takes at least a few weeks.  Since I don’t cash my paychecks very often, I lose them sometimes.  In theory I can get them sent to me again if I talk to someone and explain I lost them, but this isn’t something I even put on a to-do list because it’s not likely that I’ll do it and it’s a lot less immediate than other things on the list.  Right now there is at least $100-300 that I should have been paid and could get but it’s not realistic.

Anna’s dad Richard coached me through getting about $800 when the agency that manages Anna’s services sent my paychecks to the wrong address several times.  $800 is enough money that I can’t pretend it just isn’t important, but there’s no way I would have been able to get it without help so I guess I would have ended up trying to pretend that I have more important things to do than get an entire month's rent.

Richard is also helping me sign up for the San Francisco healthcare program.  Even though it is available to everyone in San Francisco, I wouldn’t have signed up on my own.  (Wouldn’t have been able to?  Just didn’t want to becaue healthcare is stupid anyway?)  It isn’t hard but it took several months because he had to walk me through everything and he is a human who has to keep track of his problems and 50% of Anna's problems, and is also the kind of person who helps multiple unrelated people with their problems.  If I could just take care of my entire self, I could have signed up months ago.

Except it’s just a waste of time because when I lived in Cincinnati I had really good benefits but I never went to the doctor or even learned how to use my benefits card.  Six months ago when I was visiting my parents, my mom decided to organize and pay for me to go the dentist.  The dentist found 7 cavities (all hidden on the inside of my teeth, which is a great metaphor for my toxic personality.)

The dentist also noticed that I have a skin condition covering most of my face and ears.  I tried to get her to stop touching my face by saying, "It's okay, I just have messed up skin."

"Don't say that!" she admonished me.  "It looks like contact dermatitis."  (It doesn't, because it's not.)  "You should go to a dermatologist.  You're a beautiful young girl, you shouldn't just be saying you have messed up skin."

So let’s pretend I have a health plan that covers this and I get myself together enough to make an appointment with a dermatologist and I get myself together to go to the appointment and I don’t cry when I have to talk about the fact that my face looks like a mask, and I can afford all the medicine and it’s going to work if I use it.  Am I going to be able to deal with adding a bunch more things I need to do every day?  Am I going to use it if it has side effects that require me to put drinking huge amounts of water at the top of my list of immediate needs? What if it makes my face feel weird and I have to spend time getting used to it several times a day? Fuck that.  Then I cannot go to work, get dressed, shower, do laundry, eat, etc.

The agency that manages Anna’s services has yelled at me and made me cry for not being able to talk on the phone by myself.  Richard had some plans for me to not be involved with them anymore, and he recently found out that the regional center could pay me directly and I’d make more money, but I’d have to deal with all the taxes that your employer usually figures out for you.

As soon as he unveiled the new information, I started thinking too hard to talk.  Eventually I said: “I wonder if I would make enough to quit my second job and then I could use the extra day in the week to figure out the taxes."

“You wouldn't have to do that.  It’s simple,” he said and continued basically being kind and suggesting how I could find someone to help me with taxes.  “This could be really good.  You could make more money and you could quit your second job and have the day off to play with dogs.”  I'm trying to start volunteering at a dog shelter.  Did I mention he is being super nice and has no reason to help me with the 400 things he's helped me with?

But the whole idea of the taxes made me get wary because it seemed like too much work, and then I got sort of shaky-sad, which is a feeling I usually only have when I look at my skin.  Be careful, be careful, it's not realistic, it's not realistic, be careful.

Timer Corner

Beep beep beep, it's time for...

TIMER CORNER!



So, if you have a disability, you might find that you need to use a timer. If you're wondering why a timer would help someone function better, congratulations! You don't have to think about some things that are a big part of my life.

(Yeah I should chill out and be nicer but sometimes I get tired of feeling like I can't talk about things like timers because they are too weird.)

I liked to use timers when I was little just because I would time myself while I was singing. My family had a classy timer with three different displays--one would count the time something was taking, one was a typical timer that counts down, and one was a clock. There wasn't really any reason for me to time myself singing but I guess even at that age I could tell that I was going to have a long love affair with timers and I liked being around them.

When I was in fifth grade I spent about half a year being pretty organized and independent about getting ready in the morning. Until then, I would always have trouble getting ready because I would start thinking, spacing out, or reading books in the middle of doing things. But in fifth grade, I decided to start getting up at a certain time and turned my morning routine into a race where I was supposed to take a certain amount of minutes to do every piece of the routine. There was a natural reward in that if I finished everything fast enough, I'd have a bunch of time to watch TV and eat before school. I did pretty well with this for the rest of fifth grade, but in middle school I had to catch the bus earlier so the motivation to work that hard wasn't there.

In the last two years of high school I started getting a bit better at these things again because I would use music and timers to do all kinds of things like getting ready for school, taking showers, and studying. At that point in my life I really didn't like to think of myself as Autistic or disabled so I didn't really think about what I was doing, and I didn't know that other disabled people used timers. When I went to college and started living in a dorm with a roommate, I stopped using timers and music as much, because I had to do so many activities of daily living with someone else in the room, and I felt self conscious about it. Obviously, I wasn't able to do things as well or quickly once I decreased my use of timers. But I never totally stopped using timers and when I would play guitar, I really enjoyed timing myself and playing my songs in 5- or 10-minute intervals.

About the time I started writing this blog, when I was 20, I started using TV shows in a similar way to the way I use timers and music. In the last two years of college, I used timers and timer equivalents more than in the first two years, and the year after college I probably used them more than I ever had since I was in high school. I wouldn't say I use any of my timers or timer equivalents as effectively as I should, but I'm continuing to develop new ways to use them and learning more about them, and so I'm going to write some timer reviews, which will take into account what something is good for and how well it fits into my life. These are the things on my list so far:

1. West Bend timers
2. Update International timers
3. online-stopwatch.com
4. alarms on my phone
5. listening to CDs
6. YouTube videos
7. TV shows
8. singing
9. trains and buses
10. people

2. Unevenness and inexplicability

(Two)

One of the reasons I don't write primarily about my disability (if you were wondering), and also a reason I am balls at self-advocacy, is because I'm a person with--DUN DUN DUN!--uneven skills.

I actually don't believe in uneven skills! It's a social construct and this is obvious in the fact that--while people sometimes make practical blunders like assuming someone with a physical disability has a mental disability, or talking to someone who is blind the way you might talk to someone who is hard of hearing--most people would admit if they were asked that there is no logical reason someone who is blind must also be deaf, or someone who is physically disabled must also be mentally disabled. And no one feels the need to say someone has "uneven skills" because they can hear but not see.

But within categories of disability, especially the mental disability category, there's this expectation of evenness. If someone's abilities aren't exactly at the same "level," whatever that means, they're possibly an amazing curiosity, but probs lying.

A person can write but not talk? A person scores high on IQ tests but can't do well in school? A person does well in school but can't figure out how to go grocery shopping or make a meal? A person can cook but not clean? A person can make some kinds of phone calls but not others?

No way guys, all these people are just liars! Check it out, this person claims she can't talk, but I found a video of her SINGING! Oh hey, you said you can't make phone calls, but I know that you made a phone call one time. Caught in the act!

As a person who can't make certain kinds of phone calls, like phone calls to follow up on jobs for example, I would never be stupid enough to tell anyone this. When someone tries to give me advice on finding a job and the advice includes phone calls, I just stop listening to what they're saying and start smiling really big to show them that they're helping me LOTS.

"Why can't you make those phone calls?"

"I don't know."

"How can you not know?"

"I don't know? I just don't? I guess probably you could locate it in something about phone calls feeling insincere, and worrying about bothering people, and not knowing what I would say in the phone call, all of which are kind of horrible things, multiplied by like a hundred because I applied for a hundred jobs so there isn't even an end in sight."

"Oh so you could make one phone call."

"I mean, theoretically, probably? I'd sort of deal with it all day. I'd write myself a letter about it. Maybe someone could sit with me. But it isn't one phone call, it's a hundred phone calls."

"Why can't you make a hundred phone calls if you can make one?"

"Because it would take a hundred days."

"So you can make phone calls!"

"You're totally right, if I took a hundred days and used them to only make phone calls and felt calm about everything else. I could probably do it in less than a hundred days if I had my own personal phone call aide to support me in all the phone call problems and keep me from running away from the phone. Maybe I could even do it in a few days, with a phone call aide. You win. Great job. Are you going to hire one?"

"No, that's stupid."

"I know, so why did we have this conversation?"

No one knows!

One time my dad tried to have a conversation with me because I said something about it taking me a lot longer to do certain things than it took other people. He kept asking me why. I was like, "I don't know, but towards the end of college I started having to pull one or two all-nighters every week, because I could only get work done if I had that much time to do it in." My dad kept asking me why I didn't do things like "sleep for a few hours, and then wake up and work." I was like, "I don't know, because I know that wouldn't make any sense for the problems the all-nighters were supposed to correct?"

We had started having this conversation because I didn't think I could write letters that night if I also wanted to go to bed at a normal time. My dad said, "What about you bring your letters downstairs and I sit with you and make sure you write them right now?" This sounds nice, but I already knew what kind of conversation it was! For some reason I agreed anyway just to see what happened.

When I went upstairs, I said, "If I don't come downstairs in ten minutes, will you remind me to come downstairs?"

My dad was basically like, haha! Caught in the act!

Because--you saw this coming if you have "uneven skills"--the fact that I asked my dad to remind me to come downstairs showed that I actually was just lazy and didn't want to take responsibility for my own actions. Asking for this was the final straw that pushed him over into thinking that the whole problem I was describing (which he'd obviously made it clear he had his doubts about) was too ridiculous to be true.

I don't know if it seems weird that my dad wouldn't believe I was telling the truth, since I have been diagnosed with some disability or other since I was a little kid. In my family, whether I'm disabled is not a controversy. But when I try to tell my parents a fact about my disability, it is always assumed to be not true.

Uneven skills can also be called inexplicable impairments and they are basically anything someone thinks is ridiculous or impossible. I guess you might be wondering why I am just writing about myself, when I am supposed to be writing about Internet arguments. The reason is that, first of all, random Internet judgments of someone's ability tend to be made out of the same mindset that assumes someone is lying because their disability seems too "uneven" or unlikely.

Someone with a developmental disability is typing? Someone with a developmental disability is writing a blog? I saw on their Facebook that they're in college! My bullshit detector is going off--this combination of facts is simply too ridiculous to be true.

So first of all these judgments often come from the fact that most people have a poor understanding of uneven abilities (especially when those abilities are stated by a disabled person and not a parent or best of all a professional). But second of all, it's because so many disabled people are really used to having people (at best) smirkingly accept our stated impairments, if not outright challenge them, that it is so upsetting and frustrating to have some random person on the Internet imply we are not disabled because we have a blog. At least my parents tell me to my face that they think I'm trying to get away with something.

probably going to delete this because it makes me sound super unstable, so enjoy it while you can.

I'm going to a doctor tomorrow to hopefully get a lot of cognitive/learning testing, because even though I've been diagnosed with ASD a few times and stuff, a word like ASD isn't really useful when you are just really stupid at the things I'm stupid at. And I really want to know, and be able to tell people, exactly what's going on. My mom told me to write some stuff to talk to him about and I wrote this (but I won't say all of this obviously, but I thought you might think it was interesting):

Emotional Problems--which I understand are going to seem like the main thing, and it’s going to seem like, why am I going to a learning specialist for this stuff, but bear with me.

Anxiety, which sometimes feels like stereotypical anxiety but usually feels like a boring or distracting thing, like fatigue, or dissociation/derealization (I think this is interesting: I have a very strong sense of time and past, so sometimes people and things from a very specific time period will become unreal, while I, and people and things from other periods of my life, will still feel real), or a really strong desire for something to happen, or a desire to leave, when I’m waiting in a line or in class--like, a sudden sense of intense anger if for example someone cuts in front of me in line or my professor says, “well, let’s just stay a minute longer so we can all finish translating this”

Suicidal ideation, et. al. Mostly, I had a really strong interest in getting a traumatic brain injury by getting myself hit by a car, or jumping out a window headfirst. About the time I turned 22, it was all I could think about, since if you get a TBI before age 22, you’re classified legally as “developmentally disabled,” but if you get it after age 22, you’re classified as “elderly/physically disabled,” and you get worse services. Besides, I already have a DD since I have autism, and I’d rather get services with people like me. So I spent the days before I turned 22 thinking about how I should really probably get hit by a car. And then a few weeks later, after I’d missed the deadline to get my TBI, I started thinking maybe I should just actually kill myself. I know all this seems unreasonable, but I’m getting to the point. Just from knowing a bunch of other people with autism, I know that it’s not all that weird for me to have the kind of cognitive problems I have, but a lot of people don’t know that, even professionals. There’s no easy way to explain to people why stuff is so hard for me. I feel terrible. I feel stupid and lazy. I hate asking for extensions from professors, or help from disability services at school, and it’s really hard because I have to explain everything, and I usually feel like they resent me. I really hate the disability services person at my college, because in my brief dealings with her she’s made it really obvious that she doesn’t think I have any real problems--but I had to transfer my credits from study abroad, and I really needed help figuring out what to do, and if I didn’t do it I wouldn’t be able to graduate--so I arranged to meet with her. All I needed was for someone to sit with me while I made a list of everything I needed to do to complete the process; and she did that, but she was still really patronizing. (I’m actually not as paranoid as I sound; I know several people who have had bad experiences with her.)

Last summer, I worked at a sleepaway camp for disabled adults. I mostly really like working with other people with DDs, because it’s a more comfortable environment and I don’t have to worry whether anyone is noticing that I’m disabled, because I’m not the only disabled person there. I mostly enjoyed my job. But at one point, I had these campers who were older men with Down Syndrome and they would all get really confused when they were getting dressed and brushing their teeth and showering, and basically needed help staying on track for everything. Which is basically what I’m like, unless I try really hard and focus really hard. I wasn’t really able to shower easily, without getting off track, until I was probably 19 or 20.

So, it was really hard for me to remember everything I had to remember to help these guys get dressed, and stuff. I felt so incredibly incompetent and I felt like none of the other staff understood why it was so hard for me. I mean, most of them didn’t know I have autism, but even the people who I was more friendly with and had told--I mean, people just think autism means you’re socially awkward or something. So I was just getting so worn out, and I just couldn’t help feeling super jealous, and wishing I was more severely disabled like they were, so that it would be someone else’s responsibility to make me get dressed in the morning and take showers and stuff. And that if I couldn’t do something, people would just think that was understandable, and help me, instead of thinking I was an asshole, and I wouldn’t feel like I had to just hide it or lie about it because that’s the polite thing to do. So this is why I want a brain injury, or sometimes want to kill myself. Not exactly because of the cognitive problems, but because they’re not something I can prove, and I feel like a stupid person who’s probably just lying and being really lazy. I sort of hope that you’ll give me these tests and they’ll come back saying that I have the working memory of an 5-year-old, or something--like, I don’t even need to tell other people that, if I just knew that for sure, I’d be so happy.

But anyway.

Cognitive Problems--
shit for brains
i.e.:

it’s really hard to remember anything short-term. You can’t tell right now because I’m not in school, but usually I have a bunch of instructions written on my hand and on my computer keyboard so I can remember to do things. I try to keep assignment books or whatever, but it takes a lot of mental switching around to write down all the assignments, and it takes a lot to remember to look at the assignment book, so it doesn’t really work. So I put it on my computer and my hand because I don’t have to remember to look at them. As soon as I stop looking at something, it tends to disappear from my consciousness unless I try really hard to keep it there.

Also it’s hard to transition. Ever. It’s just really unpleasant to have to switch from doing one thing to doing something else, or to have my day go differently from the way I expected. For example, once I was really upset because a professor and the other people in a class told me that I would have to switch my work shifts to a different day, because the professor wanted to move the class to a different time. I didn’t know how to switch my shift because I don’t do things like that.

I just need someone to walk me through things, like, figuring out how to do stuff, but it’s almost impossible to ask someone to do that and that is why I sometimes want to kill myself--it’s not the fact that stuff is hard, it’s the fact that such stupid things are hard and it is so close to being easy. If it was just someone’s job to help me do stuff for an hour a week, my life would be completely different, but it’s not, so it’s not.

That is all I can remember right now, and it doesn’t really seem like a big deal--it even seems funny. And it is on the small scale. But if you’re actually in college and you can’t remember things and it’s hard to transition, and then you get to feeling anxious about all the things you’re trying to keep in your head, when the absolute most pleasant thing would be to forget them because you probably won’t be able to do them anyway, so you start cutting corners and dropping little things, because you don’t want to get upset; and you can’t stand to think about how things really are in terms of school, because you’re afraid you would get so upset you’d never come back from it; and you can’t really ask people for help because no one really gets or is trained for this stuff, and you don’t exactly understand yourself what is wrong...well, then, you just start thinking it would be better to die, not because you’re sad all the time or something, but just because it is the only easy answer to the question.

how an autism spectrum disability affects my life now

[the video hasn't processed yet, if it doesn't make it onto youtube I'm going to plotz though.
FUCK YEAH SEAKING IT'S PROCESSING
score

]

Hey um I tried to do this yesterday but the video was too long and it wouldn't post. Um, I made this video a year and a half ago which is called "How Asperger's Syndrome affects my life now." I, um, constantly want to delete this video because I don't identify as having Asperger's Syndrome anymore, and um the video also starts with me saying something like, "Well I guess I'm very high-functioning so you probably shouldn't judge Asperger's Syndrome from listening to me," and in retrospect I think that's a ridiculous thing to say. But I mean like everyone else I like when people talk to me on the Internet and I get a lot of comments on that video so I don't want to delete it. But I wanted to make a sequel.

Um, first of all, like, the whole Asperger's thing...kind of a stupid word, not going to be in the DSM anymore because it's not a concept that makes sense. Um, I mean it's not the only ASD diagnosis that I ever got, either, and I also um...the thing is that the reason I used that word about myself was not ever because I wanted to. Like, I used to use the word autistic when I was much younger. But um, from non-disabled people I would face you know criticism because I would be told, "You shouldn't be using that word about yourself because you're not severely disabled enough" or something like that. Um, I don't really think that this is a way of talking that makes sense, I mean there are lots of...pretty much every disability that I can think of, there are some people who are very severely affected and some people who are very mildly affected. I also don't think that people can just talk to me and decide that I am mildly affected when they don't live my life. Um, so, I guess, I'm no longer interested in feeling guilty about using the word Autistic about myself--I mean I consider myself part of Autistic culture, I consider people with severe disabilities to be people who I feel as much loyalty to as I do to people who have a disability experience very much like my own, I don't, um...I mean, I've known a lot of people with severe autism, and I mean it's more severe but it's not something else, and I don't...that doesn't really make sense to say it is.

Yeah, sorry, to actually talk about myself, um...I, like, I feel like, I mean before, I didn't know other people with autism so I was very um, my whole view of what stuff was was very much based in what I read in books by people who didn't have autism, so I was, I feel like I was always trying to fit myself into that kind of category and then when I didn't fit it I would just say, "oh well I must be so high-functioning that that's why I don't fit into that description." [note: but then there were other things I couldn't do that even people with "classic Asperger's" [i.e. worse than mine] were supposed to be able to do, so I didn't understand that.] But you know as I've gotten to meet other people with autism and other disabilities I've realized that you know I have stuff going on that's pretty classic sometimes but it hasn't been written about as much but it happens to most of the Autistic people that I know.

Um, okay, so, first of all, the whole social thing has been something that's really massively changed for me in the past year and a half since I made that video and since I became more involved in disability culture. I think the thing is that even though before I used to think of myself as being, like, "better" and "recovered" and "not really autistic anymore," like, because I was always judging by, because I was always judging myself by the standard of whether I looked like a normal person, I...it was very hard for me to relate to other people who didn't have disabilities because I always felt inferior to them.

Like, um, I guess um the way that I walk is kind of different from some people who don't have disabilities, so um, especially with other women--when I was friends with other girls, if we were both walking down the street I would become so conscious of the way that I walked and the way that it wasn't like the way the other person was walking that I would get like pretty upset, and um it really poisoned my relationships especially with other girls because I was very, I was always comparing myself to them and thinking how I couldn't move like them and stuff like that which is kind of stupid.

Um, another thing is that I was really really worried always that other people didn't really want to be around me and I was just like attaching myself to them, so it meant that it was hard for me to reach out to people and then when I did I felt really like upset about it and like they didn't really want me there and I mean...I think this has been a really...it was a really bad thing in a lot of my friendships because I couldn't help...I would always resent people as if they'd actually done something to me, when in fact like the only thing that was going on was that I thought that I was inferior to them so I just resented them. And um I guess all I can say is that since I've become more conscious of identifying as disabled and less upset about being disabled, it's pretty, like...you know if I'm walking along and I know that I'm walking differently from someone else it's like, surprise! I guess I'm disabled so I walk like I'm disabled. Shock! Not really a big deal. Um, I mean I figure that other people probably want to be around me just as much as they want to be around anyone else so I'm not afraid I guess of trying to reach out to people and talking to people and...

It's funny because people, um, professionals always talk about "social skills" and they frame social skills as being able to look like you're normal, but I mean, what I would call my social skills have vastly improved now that I don't care about that anymore because you know when you're not thinking about trying to make yourself look like you're normal, you really are much more interested in other people and you have a lot more energy to spare on just caring about other people and listening to what they have to say.

Um, other stuff, the brain stuff, which is actually, like, the real problem. Um I've been watching The Walking Dead recently which is a TV show about zombies and I figured out that I'm basically a zombie. For example if a zombie was following a person that it wanted to eat, and the person leaves, the zombie will just keep going in the same direction, and um that's pretty much what I'm like. It's hard for zombies to like make new decisions or um figure things out, like they just see objects that they used to use when they were alive and they just get triggered into using them the same way 'cause they don't really, you know, get it. Um, it's very hard for me to think about anything in a new way or to switch myself into any kind of new task, which can be a really huge problem. It's, um, and I mean there's also a lot of stuff which I guess is probably a bit like having dementia which is just you know constantly forgetting what you're doing a lot--and I mean, I know all this stuff is the kind of stuff where people can be like, "oh that happens to everyone," which is totally true, but I mean the way that it happens to me is very pervasive and makes it hard to do things.

I also have pretty severe anxiety problems and um a problem is that I get such severe anxiety about my um (laughs) cognitive problems, which I guess are what you would call poor um central coherence and executive dysfunction, and stuff like that, if you like big words, um I get so upset about those things that I like will intentionally like block off like the part of my brain that tries to remember what I have to do and um will intentionally get myself stuck on like new ideas--or, not new ideas, I will intentionally get myself stuck on old ideas so I can just kind of stim out on them and not have to um do the actual work--which I mean, it's very hard, the only way...I mean, the good way for things to happen is for someone else to just sit down with me and like calmly explain to me what I have to do and help me like stay like emotionally stable during that.

But that doesn't always happen because I don't get disability services at school because I haven't been recently diagnosed enough, etc., and even if I was people would probably be like, "well, autism is just a social disability so why do you think you need help with mental stuff?" Um, yeah, not a lot of fun, that stuff.

Something that's interesting, I don't know how many people it happens to, but I, um, when things are very bad for me I have like dissociative and derealization symptoms which are um...it basically means that everything kind of looks and feels the same. So like talking to my mom and talking to my best friend and talking to a stranger all feel exactly the same. It's like um I mean intellectually I remember who people are but it's kind of as if I had just been fed the information and I didn't actually have like the lived experience of having them in my life. So it's just like when you're with people you don't feel the same click of recognition when you're having that kind of episode (I guess it's, I guess you could call it an episode) and I um I don't know. It can be really scary. Especially because you feel like you don't know them so it's kind of like a sense of stage fright, because you know it's as if you're performing a relationship with someone that you don't really have in your life. So um that can be really hard and I think that's a lot of why I try to avoid all my cognitive stuff and just end up fucking myself over by trying to ignore like the brain stuff, just because um when I look at things head-on I get a lot of anxiety and the results can be so unpleasant that I feel like it's almost worse not to do it.

Okay, I ran out of time, I hope this video is short enough that it'll actually post. But I just wanted to make this because the other video I don't like so much and I really think this is better and more in line with what I actually think about and believe now. Okay.

(things aren't going well, obviously)

I'm approaching the cutoff for DD services for acquired disability so all I can think about is I better get one right now. I'm thinking of lying down in the middle of a busy intersection except we don't have those in Lorain County.

(imaginary conversation)

"I'm hoping someone will come up and hit me in the forebrain with a blunt object so I can have a real disability."

"That's a terrible thing to say!"

"I know. But I have autism, so I think I'd be pretty much the same."

"Oh yeah, I heard about autism on TV. Is that the disability--oh sorry, do you prefer 'difference'--where you rock back and forth and don't like looking people in the eye?"

"Well yeah but that's not the part that makes me want to stick my head in a gas oven*."

*speaking of, my former professor/friend told me that maybe I am like an electric oven (gets to a particular setting slowly) and other people are like gas ovens (gets there right away). At the time this sounded kind of sweet, but all ovens are not created equal. Now I face explaining why I can't go to my practicum because my friend's car is in the shop and the reason I'm using my friend's car (which is massive and doesn't have a working dashboard--you have to guess which gear you're in and how fast you're going) is because the process of applying for a community service car was too complicated for me. In previous years, this professor has accused me of "putting myself down to get sympathy," so I can only imagine how fun this conversation will be.

brain problems

There's a limit to the amount of moving/forcing my brain around I can do, especially if I'm in a situation where I am cooking and cleaning for myself, dressing myself, and making some of my own schedule (you can call these transition problems, inertia, executive function problems, weak central coherence, and many other overlapping things). And there's a limit to the amount of anxiety I can endure (I experience anxiety about many many things, including changes in routine, noise, lots of social situations although not the kind you think, and about the brain problems in general).

I'm a person. Sometimes I get tired. Sometimes I have to feel safe. Sometimes I have to do things that feel really good. But due to anxiety and transition problems, it is hard to know if I will ever get out of doing something that feels good, once I start.

I'm very afraid that it won't ever be safe for me to live on my own, and also that I'll never be able to be a parent and that the kinds of jobs I'll be able to do are somewhat limited. Even a year and a half ago, I didn't understand all this about myself--how much stuff I can't do consistently. (I almost think it would be easier if it was things I straight-up couldn't ever do, but that's not it. It makes it harder to explain, and it makes it harder to forgive myself when I fail because I know I've done it before for very brief periods.)

When people say I'm high-functioning I want to cry and then punch their lights out.

The end.

There are lots of ways I managed having a disability when I was in high school. For example I used timers for everything, like taking showers and getting dressed.

When I got to college I was embarrassed I guess.

Now that I live in a house I guess I want to start using timers again because they were really effective. It's just weird to think that I never really thought of those things as autism-related. And I know it's because the view of autism I had was so narrow. Once my problems weren't the extremely stereotypical problems, I just started thinking of myself as being "better" and my real problems were nameless.

It was funny at camp when I noticed my camper Tim, who is my age and has Down Syndrome, also uses a timer. And a really nice feeling too.

Sometimes I feel that life will never be as easy as it was in high school--I mean I'm a lot happier, but my shit for brains/curds and whey is really starting to show and become inescapable.

part two of what I mean

It would almost be like if everything only existed while you were looking at it so if something was important you had to look at it all the time. It's hard for me to concentrate on anything deeply because I'm afraid of what I might lose. I have a sense of having to force myself to do everything I do. I also have trouble working on longer-term projects that are upsetting to me (like transferring credits from study abroad) because I'm afraid that "looking" at them for too long could lead to a lot of distress, so I constantly "look" away, but when I do that, they cease to exist.

ambitions

I know I don't really need to decide now (or ever, I can bounce around) but I think a lot about job stuff after college and what kind of things I want to do.

I think something I've been realizing is that I may not be equipped to be support staff for adults who have ID/ASD. This occurred to me during the third session of camp when my brain stopped dead after micromanaging three people's showers in a row. I am a person who is mentally able to shower, but it's only been in the past few years that I've been able to do it well, without becoming spaced or having to use timers and write directions on myself. Even though I can do it now, I guess the foundations are still shaky enough that I have a limit, and don't have enough of that type of function to spare on other people who have similar problems. I'm just not able to do that kind of job long-term, and that makes me angry and sad.

An obvious idea would be to work in a school because there would be a fixed schedule and I could help people in academic areas where I'm not impaired. But I guess what bothers me about that is I feel like so many (non-disabled) people get excited about "special needs" kids because they think they can just waltz in and make the kids not be disabled anymore, especially in the case of autism. Or because they think that kids with disabilities are really cute and interesting--while being creeped out by disability in adults. These kinds of attitudes have always made me want to work with adults and not kids or teenagers because I feel like adults with developmental disabilities are just erased and devalued and the people they end up having as staff are not serious about what they do.

At the same time, the fact that most people who work in special ed are all Nondisabled Person's Burden about it isn't really a good reason not to work in special ed. And my decision to work with adults or kids doesn't affect the stigma against adults so "I have to work with adults" is kind of a dumb principle to have.

I'd really like to end up working with people who have "multiple disabilities," which I think is a really weird term. Last spring I got to spend some time in a class of preteens and teenagers some of whom had that label, and I felt like there wasn't enough of an organized attempt to engage them and develop communication. I mean, I'm not denying that a lot of people with the label probably really do have mind disabilities as well as physical ones, but I just think it's ridiculous to act like you can assess someone's intelligence who doesn't have a communication system. If I had the choice I would really want to do nothing but work on AAC with people all day, because it's so important and I think I'd be good at it, but I think that's sort of a big deal job that you have to go to grad school for and make your own schedule which doesn't seem workable for me.

Obviously I write a lot about being a Disabled Staff Person but it's usually more about identity and about having movement and communication things in common with clients/students that the other staff don't have, and how that is a weird experience. But the other part is that sometimes I wonder if I just am too disabled to be much good to other disabled people. When the person I'm supposed to be supporting doesn't need much more help than I need, or needs kinds of help I wish I could get, it ends up being sort of disorienting and occasionally making me jealous since I'm "high-functioning" enough to be expected to direct myself in daily living when I sometimes barely can.

In Can the World Afford Autistic Spectrum Disorder?, Digby Tantum tries to say that people with ASD are more wise, or creative, or something, because we figure out pretty early on that there are some things we want that we will never be able to have. And sometimes I do manage to convince myself that it's some kind of spiritual gift, but, well, usually not.

Max is a miracle

I have an imaginary friend named Max. He resembles me and some of my friends, but not as much as I would like. When Max was growing up there was concern because he was incredibly disorganized and spacey. He spent hours on the Internet. He zoned out when people were talking to him. He got confused about coming up with plans and taking initiative.

But look at Max now! He goes to college and gets good grades. Or he's done with college and has a pretty good full-time job. He lives on his own. He does all these things that his parents and teachers thought he would never be able to do. And it's not because he's "recovered," because he still sucks at all the same things.

I know that when I say Max does things that are really hard for him, it sounds like I'm creating a supercrip narrative about how he is just wearing himself down to the bone doing difficult things, and you should too. And some people who know Max do talk about him that way.

But Max has a secret: he skips to the end or slides into home plate at the last minute or wrangles things out of people so that he can get stuff done despite having no executive function to speak of.

The mainstream reaction to this would be to say that Max is a bad person and if he was a good person he would try harder to get things done on time. However, he tries really fucking hard. That's what everyone with executive function problems does, because no one accommodates them because there's been very little study of them so most people don't realize they're even a part of autism, and it's hard enough to get accommodated for things everyone knows about. Seriously. No one wants to be at a point where executive dysfunction is affecting their life. Max, and I, and everyone, are working as hard as we can. It's not enough.

You have to cheat. Ask for as many extensions on papers as you possibly can. Pretend your computer is broken. Use your charm if you have any. If you're going to cry, don't wait until you're out of the room--do it where the people in power can see you. Eat the same food every day if you can't think of anything else to make. Put other things ahead of taking a shower, even if your mom said you have to take a shower every two days. Sometimes people won't notice you're cheating but even if they do and are annoyed you might still get by.

My mom goes to workshops for people with ASD and then gives me the really long printouts that go along with them. The printouts tell me to sit down and make a list of everything I have to do. When I am anxious, as I have been this year, it's hard to think about these things so I hold on to the printouts out of guilt but don't actually read them. Then my mom finds them and gets upset that I haven't read them and says that I'm not ready to live on my own.

But I am ready to live on my own. Badly. Just like I can hold down a full-time job. Badly. Just like I am getting my homework done. Badly. And I forget to balance my checkbook, which none of my non-disabled friends do because you can get it online, and my mom says, "Well it's different for you because they would be able to do it if they needed to, but you wouldn't, so you have to do it." Theoretically I understand this is true, but my checkbook remains unbalanced.

Which is bad. And I feel bad. I do! At this rate I'll never be able to go to college. But I do go to college. At this rate I'll never be able to have any friends. But I do have friends. I just don't do everything right with them all the time.

This blog is a vice. It is something I have used in the past to avoid doing work or looking after myself. Sometimes trying to force myself to do work or look after myself makes me anxious or upset. So I've also been using this blog to avoid self-injury, in a roundabout way. I'm Somewhere Else is a bad, bad business. However, when I forget its context I feel kind of proud. To someone who doesn't know me, maybe it seems like an accomplishment.

For people whose lives are controlled by executive dysfunction, I firmly believe the difference between getting stuff done and not getting stuff done is not caring about doing things right. You cannot always make a list all the time and be early for everything. You just can't. Hopefully you're good-looking or funny or you remind someone of their niece. Exploit all opportunities. Do not do what people who are not disabled tell you to do (unless you want to, of course).

All too often I find myself waiting for the day when I can do shit properly, which more or less amounts to waiting until I'm not disabled anymore. Then I can feel good enough to deserve everything I want. Well my cure is slow in arriving, so I'm just going to do everything I want now, if that's okay with you.

sorry about posting 400 times today

but I have sort of been crashing, and I really liked this poem when it was in the New Yorker in 2002 the week my dog died, and it's a poem that I find myself thinking of, well, always when I am crashing. I just got home for break, and my mom has been going to workshops at the Autism Spectrum Resource Center and she was telling me about the people and I asked, "Are there any Amandas?" and my mom said, "no, there's no one as high-functioning as you." Also whenever my mom tells anyone I have Asperger's she says "But she's very high-functioning" even though I'm standing right there so I'd think the person would be able to tell if I'm high-functioning or not.

Anyway, I guess my question is if I'm so high-functioning why can't I do anything. I know the answer is that I can do a lot of things, for example we went to dinner with my grandmother and aunts and uncles and cousins and it was easy and no big deal, also my dad started a long conversation with me when I was doing something else, and I didn't whine or anything. Sometimes when this stuff is going on it just strikes me how easy it is now. I know that's good. It just frequently doesn't feel like enough. It turns into this creepy tug-of-war, like how I love going to the airport because I can take off my shoes and put my computer in the tray and go through the metal detector, and I love taking trains and subways because I know how, but then people ask me to do things that make me so upset, like my professor telling me we're going to have class on Tuesday instead of Thursday so I have to change my shift at work. When this happened I wrote on my knee:

"Life Is An Endless Mess"

and while I know this is dramatic, it sometimes feels that way and makes me want to cry.

I was thinking about my self-injury because when I did it I didn't have very stereotypical motivations. I basically did it to win the tug-of-war. Some people supposedly don't feel it or they like the way it feels but I always felt it, and I did it because I thought that other people wouldn't have been able to keep going, but I kept going to make up for all the other situations in which I couldn't keep going.

Anyway, this is the poem:

The Promotion
by James Tate

I was a dog in my former life, a very good
dog, and, thus, I was promoted to a human being.
I liked being a dog. I worked for a poor farmer,
guarding and herding his sheep. Wolves and coyotes
tried to get past me almost every night, and not
once did I lose a sheep. The farmer rewarded me
with good food, food from his table. He may have
been poor, but he ate well. And his children
played with me, when they weren't in school or
working in the field. I had all the love any dog
could hope for. When I got old, they got a new
dog, and I trained him in the tricks of the trade.
He quickly learned, and the farmer brought me into
the house to live with the family. I brought the farmer
his slippers in the morning, as he was getting
old, too. I was dying slowly, a little bit at a
time. The farmer knew this and would bring the
new dog in to visit me from time to time. The
new dog would entertain me with his flips and
flops and nuzzles. And then one morning I just
didn't get up. They gave me a fine burial down
by the stream under a shade tree. That was the
end of my being a dog. Sometimes I miss it so
I sit by my window and cry. I live in a high-rise
that looks out at a bunch of other high-rises.
At my job I work in a cubicle and barely speak
to anyone all day. The human wolves don't even see me.
They fear me not.

[I know this is the most emo post ever made, but if you want, you can bookmark it and then read it when you're feeling emo yourself and are in a state to handle it. If you read it when you're in a normal mood you might end up holding me in contempt forever.]

I wanted to tell you this

I am going to counseling on Friday but I've basically thought that there's something wrong with me because I'm experiencing constant derealization and frequently I have to concentrate to keep from screaming/crying about something that ordinarily wouldn't be a big deal (waiting for a sandwich, waiting in line, waiting for a class to end). This started a week ago. Well, maybe it happened before, but I noticed the day I shaved my eyebrows. For periods I have thought "oh, it's getting better" but they're only periods. It's not permanent. I can hardly understand what people are saying sometimes, it just looks like a bunch of colors.

I got scared that I was going to be a person who loses skills.

Fortunately I saw Noah who is going to be a psychologist and is basically a joy, and I told him and showed him how much I have to press on my hands with my fingers all the time in an attempt to keep myself inside, and how I feel like I'm constantly in a state of yammering "I can't believe I'm alive, I can't believe I'm alive right here, right now" (this sounds nice but it's not, not all the time--derealization starts out seeming really fucking spiritual or something, but then you're like, shit--I can't do anything when my brain won't stop telling me I'm alive, I can't even feel God because I'm stuck in a creepy spaced-out box of my distinct moment and place).

Anyway, I was talking about how scary and weird it is to find out that something's been wrong with me ever since I came back from the UK--I mean, that must be it, because I'm taking like no classes, two of the four only meet once a week, and Noah was like, "what about your workload?" and I told Noah my workload and Noah was like, "That's a ton of work."

And I was kind of shocked. But like, I think it might just be a ton of work. Maybe I can't get anything done because there's so much to do.

In other news: I think everyone thinks that they like sex too much. Well, I mean, obviously some people are asexual. But I think you can even be asexual and think that you like sex too much. Or think that you want a girlfriend or boyfriend too much. Or that no one eats as much junk food as you do or does as little homework as you do or is as ugly as you or smells as bad as you're afraid you smell. And I think this is especially true for ASD people because we are trained to think of ourselves as deviant and overly intense--but it probably is the case for a lot of other people, too. I just wanted to tell you this because I thought of it later.

A very important letter

Dear blog,

You are going away for a while (40 days). This isn't because I don't like you. I love you. It was so nice to have you when I was in Scotland because everything was so hard that I just had to disappear and come here so that I didn't have to be There anymore. But I've been home for quite a while now and everything is great. Except that I sometimes don't do my homework, or other stuff I need to do. And a lot of this is because I like writing in you so much that I sit down and start doing it, and don't want to stop.

You are more diabolical than Solitaire and other things with no benefit. You aren't more diabolical than the thing I tried to give up last year, because I lasted about ten days and had horrible dreams. Although, you are something I can tell my mom about (at least in the abstract). The problem with you is that you aren't all bad; I mean, in theory I am happy about you. I feel that some of the things I write about in you are interesting and useful to other people. Sometimes it makes people talk to me which is nice. Mostly Todd. I guess Todd will talk to me even if I don't have a blog.

I'm tired and having trouble putting words together, but this is my last chance to do so and I know I should try hard. I used to have some notebooks where I would try to explain my problems and interests to myself. Well, I like you better, because other people read you so I feel that you have a purpose. But what I'm saying is that you're actually worse, because even though you make it hard for me to get stuff done, you actually do have a purpose and are a good thing for me in a lot of ways. This makes you hard to say no to, because I can always think of a reason why it's good to write in you instead of doing my assignments and stuff.

Goodbye dear planet and baby bear. Goodbye, Mr. Man. Goodbye, castle raincoat and maybe when you are older facts will be different. I mean, in no time at all Christ will have risen and I will once again be able to use you as a not unproductive procrastination method when there are so many things to do and I feel scared.

Sincerely,

AWV

P.S. Except maybe the Blog Carnival if I have time.

P.P.S. If you are not a blog, thank you for reading, even though it's sort of eavesdropping for you to read a letter addressed to my blog.

the stuff in italics is what I'm actually going to say

I am dropping your class. I feel like I have trouble relating to and grasping the concept of ableism as it is portrayed in the class.

The idea of not discussing specific disabilities or people's personal experiences makes me feel really confused. As a disabled person, I experience ableism in a way that feels very specific. For example, because I am not visibly disabled, I often get to avoid the experience of being stared at or treated oddly by strangers; but I am also expected to educate others about my disability in order to explain why I need help, and run the risk that people will simply refuse to believe my disability is real. Because I have a disability that is somewhat fashionable in the media, I get to be seen as interesting (albeit in a rather insulting way), while people with less fashionable disabilities, like Down Syndrome, are treated like wastes of space. Because I have a non-physical disability, I am often left out of conversations about disability.

By using those examples, I'm not trying to say that I want to constantly talk about my own experiences in class, but just that ableism in my opinion can be very specific and it's hard for me to understand it the way it's being presented in the class. I feel like I don't know how to talk about ableism without focusing on particular aspects and themes. I'm having trouble relating to what the class is about and I feel that I wouldn't do well in the class.

I also feel uncomfortable because it seems that most of the people in the class are not disabled so I feel othered. By avoiding specifics, it seems like we're working from the perspective that everyone already understands a lot about disability and ableism, which, from my experience with most nondisabled people, couldn't be further from the truth. I also think that you set up the class in a way that isn't accessible. In the syllabus you make a big deal of emphasizing that assignments have to be turned in a very specific way (for no apparent reason), can't ever be late, and have to be formatted in a very specific way. I think that having very rigid policies about how things have to be done is ableist, because it means that people are being judged on their ability to follow a strict set of rules instead of the work they're actually doing. You have a special section on the syllabus saying that disabled students can go through the disability services office to receive accommodations. I think this is ableist because it means that disabled people have to do all the work to be treated equally. I don't see why a person can't just say that it's easier for them to email something, or whatever. I have a lot of trouble planning and executing tasks, so the fact that you have all these rules about how to turn in a paper makes it much harder for me to do a paper and this has nothing to do with my actual intelligence or ability to do the actual core of the work (the paper or whatever).

Also, I feel that this wouldn't be considered a legitimate accommodation by the disability services office because they are also pretty medical model and would just tell me that I should work harder to switch from one task to another. Stuff on an ADA level ("prove you need something very concrete, and I'll give it to you"), is something, but for someone who's teaching a disability studies class, especially a nondisabled person who's teaching a disability studies class to mostly other nondisabled people, it's not enough.

P.S. if anyone can help me figure out how to say some of the non-italics stuff in a briefer and less obviously distraught way, I'd love that. I realized that my only reasons for wanting to stay in the class are a)anxiety about changing my schedule, and b)it makes me really angry and I guess I want to call them out or something. A) is something I can get over, and am getting over by discussing with my friends the fact that my schedule will change, and writing the new schedule in places where I can see it. B) is completely ridiculous, I know, but I just want to accomplish a little of it, tactfully, with this email.

P.P.S. This is actually exactly what I want to say, if anyone can help me put it in the form of an email:



maybe I should just record it and send it to her (kidding)

Topic sentence-->mission statement

Of course I was reading about the DSM on Wikipedia, and found out about a new diagnosis called Sluggish Cognitive Tempo. This sounds pretty much like a description of the ways that I think ASD impairs my ability to get stuff done. I'm not saying that I was misdiagnosed with ASD and really have SCT; I have some ASD symptoms that aren't included in SCT. I guess SCT-ish stuff can be part of ASD, as with Sensory Processing Disorder.

As usual, it makes me feel weird. If this blog had a topic sentence it would be "I'm super high-functioning but not like those other high-functioning people." I know that saying high-functioning is considered really offensive etc., but I feel like I need to use a word to describe what I'm like, and I'm not saying it as a judgment on other people. I think that judging people for their "functioning level" is one of the most hateful things you can do. What I'm trying to say is that I currently get by without services for my ASD, and expect that I always will. I got some services when I was a kid but I would have gotten by without them. Things would have been worse but I think I would still have been able to go to college and eventually make friends, just slower. I feel like the worst thing that could have happened to me would have just been that my life up until the age of eighteen would have been shit and I would have entered college as a very frightened person who self-injured a lot. But I would have entered college, is what I'm trying to say. (By services I largely mean going to a small private school where a lot of kids had learning disabilities and outright bullying was rare. It's hard to explain to people if I was in special ed because I don't think of my high school as a special ed school, but it kind of was, and it helped me a lot in terms of learning some methods of doing homework and talking to people.)

Anyway, I feel alienated by the word "Asperger's," because as I've previously mentioned, I feel more comfortable with the labels developmentally disabled or developmentally delayed or PDD-NOS. I am more high-functioning than the stereotypical person with Asperger's; I can sometimes talk to people without them noticing anything, I have satisfying friendships, my special interests are not that intense and not at all apparent (I think--I manage this by reading blogs and forums about them instead of trying to have conversations about them). The areas in which I'm not high-functioning are not stereotypical Asperger's problems of being an obnoxious nerd.

This is why Francisco Hernandez Jr. has (somewhat creepily) become an iconic figure to me, sort of the mascot of this blog. What happened to him has to do with getting overwhelmed and retreating and fading out. This is what happened to me for the first few months that I was writing this blog. I just called it "I'm somewhere else" because I was studying abroad, but then it ended up being a description of my mental state while I was abroad. A persistent, sometimes fascinating, sometimes horrible absence. I can't remember if I posted this at the time, but at one point I kept wearing the same jeans long after they needed to be washed because I was too depressed to work up the energy to change them.

I'm not active and odd. I'm passive and odd. And I'm not really as odd as I used to be.

I am excited about the DSM V because I feel like they describe a kind of ASD that can actually fit me.

Because I feel so alienated from the mainstream face of Asperger's, the topic sentence of this blog can be further developed into a mission statement, which is "Just because a lot of people are making dumb movies about people with Asperger's, and just because someone thinks we're good at making rocket ships, or whatever, doesn't mean that we're actually that different from other developmentally disabled people, or that we don't owe them anything."

The house

It's so hard to remember everything I have to do. I brought my assignment to the creative writing house and I was supposed to put a copy of it in each person's folder. There were twelve people. It was hard to find the folders and it took me several tries to find everyone's folder. Meanwhile I was in other people's way. I put down my nonfiction workshop folder so I could concentrate better and have more freedom of movement. Finally I finished putting the assignment in all the folders and said, "I'm sorry" to the people standing there. One girl said, "It's all right." Then I thought that maybe I had really done something wrong because I was just apologizing to be safe and didn't really think I'd done anything. I had to get up early and was so tired and could feel that my hair wasn't clean. I wanted to go home, shower, and sleep. When I got home, after I thought about what I was apologizing for on the walk home, I went up the stairs and it was hard to go up every step. When I got in my room I realized I forgot my nonfiction workshop folder.

I just want to email my professor and tell her it's mine and I'll come get it soon, but she'll expect me to come and get it now. She'll just wonder why I didn't come right back and get it.

My parents have also sent me a box of food that I don't want to talk about or unpack and put away. I already have something from my aunt and uncle that I haven't put away or written them a letter about. I feel like people don't think about how mean it can be to send someone a present.

Sometimes I feel weird tagging these things "ASD" because they're possibly universal? I don't know how other people feel. I saw an ad for antidepressants that said "Do you feel like you have to wind yourself up just to get through the day?" I was surprised that anyone doesn't feel that way. My mom thought I was taking it too literally I think. I think that I'm going to pretend that I didn't realize my folder was missing for a long time. It's boring to have to fake stuff though. Is it weird for me to feel like it would be way too much right now to go back to the creative writing house?

Time is scary?

It's sort of hard to explain what I mean, but I think that a lot of my difficulty in Doing Stuff comes out of a fear of becoming so absorbed that I lose self-awareness or awareness of time. Of course this fear is not without merit.

It makes me nervous to watch a movie. This is funny because I watch so much TV, and in marathons. But I usually watch TV on my computer, so I know exactly when it will end. Also, TV shows are usually pretty much the same length--about 20 minutes, about 30 minutes, about 40 minutes, or about 60 minutes, depending whether they're on pay television or not. Watching a 72-minute movie is actually scarier than watching 2 episodes of Mad Men, which takes 80 minutes. My dad got annoyed at me last year because we were watching a movie and about halfway through I picked up my computer and started doing my Internet things (you know, email, livejournal, etc.). He said that if I didn't want to watch the movie we should stop and finish it later. But it wasn't like that, exactly. I needed the computer to ground myself in time.

I suffer from an urge to multitask when I am doing something that might remove me from time. I used to just think it was a sensory thing, and I still think that might be part of it. It's very important for me to have something to eat at movies and even at plays (for some reason plays aren't quite as intimidating to me as movies in the theater). I also tend to feel that I should have something to eat while I'm doing work. This probably accounts for certain things being my favorite foods and not others (a particular rhyming concoction comes to mind). I like foods that last a long time and are easy to eat while doing something else.

What is work? Work is whatever a body is forced to do. Okay, not really. Work is whatever my body thinks it's being forced to do. For example, since I was a kid I have wanted to be a fiction writer, so my body thinks it's being forced to write fiction, so I don't write fiction very much because it makes me nervous, and I have an idea that I need to set myself up with a big supply of food in a comfortable place or I won't be able to write fiction. The only reason this blog exists is because I started writing in it as a way to procrastinate. If I ever get too excited about this blog (whereas now, I just look on it with a huge amount of affection because it is the most calming place to waste my time, but it's not entirely unproductive because some people read it and sometimes I'm writing about important things), I'll probably start writing a lot more fiction.

I produce a ton of music because music doesn't feel like work yet.

Latin is work.

But anyway, back to the losing time thing. When I was six I entered kindergarten and turned into a monster. Everyone thought that I had probably been molested because I sat curled up in a corner reading the same books over and over, and hit anyone who tried to make me do schoolwork. (I went to a Montessori school so I was able to get away with this for an astonishingly long time.) Clearly I was lost. The first time I recall noticing myself being lost was when I was reading a Narnia book in the bathroom and I looked up and saw that the sun was setting. I was existentially heartbroken and terrified and came crying to my dad, "I read in the bathroom until sunset!"

I guess this is possibly why I don't read books; maybe they make me feel scared in the same way. Anyway, the reason I started thinking about this is that it's winter term, which means I'm supposed to be working on a project I made up myself, on my own. My project is reading De Caelo et Ejus Mirabilibus et De Inferno by Emanuel Swedenborg. It seems like a really cool book but in the four days that I've had it, I've only read two pages. This is embarrassing. Today--as I had been planning to do every day since I got the book--I finally trundled myself off to the library where I sat in the empty and unlooked after library cafe in the booth next to the vending machines. I bought some M&Ms to be my multitask. But I ate the M&Ms while writing in my notebook about how I like ASD culture better than queer culture. I thought about some more snacks and drinks that I could buy from the machines, but decided for the time being to just start reading the book.

I read. And read some more. I read twice as many pages as I read in the first four days, in two hours. I kept thinking I should stop. Or, I kept thinking I should want to go on one of the library computers and check my email, or that I should want to buy some Doritos. But I didn't want to that much. I just kept reading. I kept feeling vaguely anxious about what I was doing. I kept feeling like I shouldn't be liking it, because it was work; how could I stand it, without something to guide me through it, like a bowl of cheese and peas? Or an episode of Firefly going in the background, like I used when I was interning at the school and had to keep myself in time while I was getting dressed and making breakfast? But after a while, under the anxiety, I realized how happy I was and how much I was enjoying myself.

I don't know what to make of any of this. I love trains. My ideal life would be one where I had to commute to a job, maybe an hour each way, on a really comfortable train, like a Metro North. I love trains because when you're on a train you're stuck inside someone else's schedule and you can't get lost. Trains are the easiest places to write and read.