20 November, 2013

when loving your enemies is hating yourself

Some more about the stuff the other day.

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

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

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

Lia is pretty stellar.

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

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

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

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

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

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

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

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

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

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

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

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

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

18 November, 2013

I guess I just like hating things

This isn't a for real post but my friend Bailee and I had a long conversation where a lot of it was about being compassionate and open toward people.  In the past year, Bailee has gotten really into approaching problems this way and I really like it in her, and theoretically, I want to be compassionate to people too, but in practice it can sometimes bother me when she suggests how I could deal with situations in a compassionate way.  In fact, I got so upset about some of her advice last week that I sent her an email saying "If other people's feelings matter so much that makes me want to die and that is a feeling too!!!" or something equally stellar.

When we had our conversation tonight, I kept thinking a lot about ideas and principles that are good sometimes but don't work in certain situations or if they are applied too liberally.

Somewhat similarly, I thought about the idea of supporting someone.  For example, I talked about the idea of a friend who has irrational fears and the first time he talks about them, it seems easy to just go through the fears and talk about them and try to calm him down and explain why they're not rational.  It's your instinct to do that and it feels good to try and help someone you care about.  Maybe at the time you would even feel committed to always helping your friend in this way.

But then I thought that you could get really tired of doing it because you want to talk about your problems or you just want to talk about a TV show or you just want to read a book and not be with your friend at all, and you're just bored and frustrated about going over your friend's irrational fears because you know they're irrational and you would much rather do something else and now it's starting to feel like you pretended you were someone you aren't because at one point, you really were happy to help.

And I also said that anyway it might be better for your friend if he talks himself through his fears independently instead of getting reassurance from you and that might be a way of dealing with the problem that yields more long-term improvement.

///

I talked about, "You need to get out of your comfort zone."  This is actually useful advice for someone and maybe everyone.  But it can be such bad and upsetting advice for some people to receive in certain situations.

For example, let's say someone has chronic pain and she is dragging herself around to go to work and basically do the things other people do until she is almost crying.  Not understanding this stuff, a coworker asks if she would like to go to a dance party and when she says no, the coworker says, "You need to get out of your comfort zone."

I guess this is how I feel sometimes when someone suggests that I should be more compassionate or think about other people's feelings more.  Sometimes I feel like there's such an extreme amount of pressure on me that I'm just going to drop dead without warning.  It's so hard for me to even appear to be doing the bare minimum of what other people do, but in addition to doing that, I have to apologize for not doing it as well as other people, look happy and comfortable, and be suitably ashamed of not having hobbies.  It creates a weird twisted feeling inside of me where it seems like there's no room to even experience one demand before I have to fulfill all the demands that totally contradict it.

When I'm feeling upset about something someone did and Bailee suggests that I should be more open to them or apologize for my failings, it just makes me really triggered and makes me feel like my ever approaching doom has scooted a lot closer.  But I actually feel like this can be good advice for a lot of people, and would even be good advice for me if I didn't think of it in a way that taps into all the stuff that upsets me so much.

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I associate anti-ableism/disability stuff with being judgmental and I see that as a positive thing.  Culturally as a disabled person I am encouraged to see bad things done to me or other disabled people in terms of how bad our disabilities must have made the aggressor feel.  I felt this way for a long time but when I became more political I decided to start seeing life in a more black and white fashion and it was very relaxing.  It was bad to kill someone, be mean to someone, insult someone, bully someone, etc.  If you could logically explain why someone shouldn't be treated a certain way, then it was okay to say that it was bad to treat them that way.  It wasn't wrong to say these things were bad instead of thinking about the feelings of the aggressors.  It was okay to just be mad at the aggressors and say they were bad.

I think this is really powerful and basically correct but my attachment to it can sometimes mean that I get sad when I develop more complex ideas of things.  Like, if it's taken me a lot of effort to acknowledge that something someone did to me was bad and I'm relishing the fact that I've decided to start hating the person and thinking they're a jerk and not feeling guilty about it at all...then it can be pretty hard when I start getting to know other layers of the person or forgive them for what they did.  Sometimes I just want to give myself a hate break because I don't think being forgiving and open is going to make me feel as relaxed as hating someone who did something bad to me.

And those are my thoughts about this for now.

30 October, 2013

About Me

I am always trying to work on the “about this blog” page because, since I am not a famous writer or performer, it’s just about the only opportunity I have to describe myself.  When I was 15 I was really into personal websites so I can attest that I’m not the only person who needs to make a whole page on the Internet just so I can tell you my favorite color of lipstick (Violet Frenzy) and my favorite Disney Channel Original Movie (obviously Mom’s Got a Date With a Vampire).

However, as I’ve gotten older I have less and less to say about myself.  Don’t mistake that for an increase in humility.  I just can’t do as much now.

When I was in college, I would have described myself this way: “I’m studying creative writing and Latin. I’m a cashier and I take classes where my teachers and classmates insult me so I can volunteer with disabled kids.  I write fiction and pop music, and I also make little art projects, like I take pictures of myself pretending to be a ghost leaving my body.  And I write a blog about disability issues.”

Now it’s more like: “I work as an aide for a fantastic person.  Occasionally I write in my blog and every few months I work on music a little bit.”

My phrasing has misled at least one friend into thinking that working for Anna is very difficult and this is why I don’t do anything else.  I don’t think working for Anna is hard and it’s easier, better for me, and more meaningful than most things I was required to do when I was in college.  But my life was much more physically circumscribed when I was in college and a lot of things were provided for me.  I was already having trouble with daily living things when I was in college, but there were a lot less of them.

The amount of work that goes into getting ready in the morning, traveling to and from my job, getting ready for bed, and trying to eat and shower an appropriate amount takes up at least as much of my cognitive ability as my job does.  I also can’t let myself space out at work because it would affect someone, which wasn’t really the case with my college classes.  I’m glad that I spend my days somewhere where my presence actually matters--one of the things that made me so angry and depressed in college was that I was required to exhaust myself doing things that didn’t immediately benefit anyone.  But having to be alert means that my job drains me of energy much faster than my classes did.

If I don’t have to be at work and I’m not trying to deal with eating or hygiene, I’m trying to force myself to focus on getting stuff done around the house so I won’t make life harder for my roommates by not doing my chores (which are already disproportionately tiny compared to theirs).  If I’m not trying to force myself to do that stuff, I definitely don’t have it in me to do anything but lie down and watch or read something in pieces with spacing breaks.  If a friend asks me to hang out, that’s usually good because I can let them do the focusing and make the decisions.  I can enjoy what we’re doing.  But when it comes to stuff where I have to focus--like writing or working on music--it never seems as important as lying down and trying to forget how much I hate moving and thinking.

I can tweak this to sound better or worse, right?  Oh the existential anguish of having to drag myself to the shower every four days.  I don’t need to be an PCA/writer/musician like I expected to be when I was younger.  I do some stuff I like and I feel like my job is meaningful and I do think that’s the most important thing.  Sometimes I still get upset because I feel like it’s unfair that I don’t feel better or get to worry about things less or do more of the stuff I’d like to do.

I came across the blog Dealing with Dysautonomia, which is really good.  Maddy writes about how she became sick when she was 14, and how she struggled with her identity when she couldn’t do the activities she used to identify herself with.  I don’t know Maddy and don't want to quote her without asking, so here is the post I'm talking about.

Sometimes I sit down and try to make plans for organizing my life in a way that would magically enable me to write and play music.  I really hope I figure it out, but the answer might be that there’s no figuring around not being able to do as much as I expected.

The point is I may have to just tell you my favorite color of lipstick is Violet Frenzy and leave it at that.

I’m Autistic.  I am 25 and live in San Francisco, in the United States.  Here’s the blog directory which is not up to date--the reason I made it was because I used to write about a lot of non-disability-related things on the blog and I wanted the disability things to be easier to find.  Here’s me and Jonathan Wilson being really cool.


(A young white woman, with a stuffed elephant on her shoulder, is wearing a shirt that says “?$#@&*!! YEAH MAN!")

29 October, 2013

The time I learned to say no

The Disney Channel has a series of spots called TTIs, short for "the time I...," where kids and teenagers talk about things that happened to them.  Most of the kids are not famous, but one TTI features a teenage Disney actress talking about her dyslexia.

She explains what dyslexia is and talks about how unhappy she was when she realized she couldn't read as well as other kids. Through hard work and pressure from her family to practice reading, she is now reading above grade level.  The TTI concludes: "Dyslexia makes things hard for me, but not impossible."

I'm not criticizing the actress--she may have been encouraged to spin her story in a certain way, or she may just feel that way.  But I wonder why when we try to give kids inspiring messages about disability, we always hide the possibility of impossibility.  When I was in elementary school, stories we got about disability pretty much were always about dyslexic people and how they had to "conquer their dyslexia" by forcing themselves to read for hours every night.  Eventually they got better.  It was never questioned that the kids in the stories would get better, and it was never questioned that they were obligated to add hours of work to their day for the purpose of doing so.

I'm not dyslexic, but I'm disabled, and I can do the impossible.  That is, if I work hard enough and make enough sacrifices, I can do any of the things that I would identify as impossible for myself.  But realistically those things are still impossible.  For example, if I have to stay up all night to do X thing, then it's technically possible for me to do X.  But like all people, if I stopped sleeping my immune system would start shutting down and I might fall asleep in dangerous situations.  I have to look at my life in perspective to say that it's impossible for me to do X regularly and it would be unfair for people to expect it from me just because there is a set of circumstances where I can do it.

It's taken a lot of bad experiences and support from other disabled people for me to start saying "I can't" and "That's impossible" instead of "That's hard for me."  I was always encouraged to think that if there's any possibility you can do something, you have no excuse not to do it.  Something being more difficult or stressful should not stop you from trying to do what other people are doing.  When I was encouraged to think I could do anything, no one seemed to consider what the consequences of doing anything might be, or if it might be better to put my quality of life first.

Sentiments like "Dyslexia makes things hard but not impossible" are intended as positive and inspiring, but to me they sound not like an encouragement but a guilt trip.  Can't disabled kids say that, yes, it is impossible to constantly work on dealing with their disability if they also want to pursue their interests, spend time with their friends, and just relax?  Can't they say, "Sorry, this is too hard--I'm going to play video games tonight like other kids."

Meanwhile, can't we teach kids to have compassion for other people's disabilities?  I'd argue that the constant procession of supercrips is not helpful in this area.  How is a kid who's raised on "The only disability is a bad attitude" going to be respectful of people who are too tired, too cognitively impaired, or can't see well enough to do what's expected of them?

I don't have a problem with this particular TTI, but I wonder when we will see an inspirational figure who says, "It's hard for me to read, so I'm pursuing a career where I don't have to read that much."  Or, "This is about the time I learned that if I accept my disability and make realistic decisions, I will be happier."  It's not what people want to say to kids--they think it's discouraging--but I think it's what kids need to hear, and I don't think it's discouraging at all.

16 October, 2013

Advice, movement, and the doctor

I don't respond well to certain kinds of advice on this blog, because when I write about personal stuff I'm usually just trying to give an example of what a particular thing is.  When someone tries to suggest solutions to something I obviously don't think there is a solution to, this just comes off like they're telling me I'm wrong and I don't know how things really are.  It's okay to flat-out disagree with an idea, but at least say so instead of giving me a (usually bad) suggestion on how to deal with a personal problem that I was just using as an example.

I usually do not talk about disability-related things to most people, because the majority of average responses are triggering to me.  I'm hesitant to say triggering since I don't have PTSD, but I guess it seems like a useful word because even though I think their responses are wrong, I know my reaction doesn't make sense.  I end up thinking about it at least all day, crying really hard for a long time, and sometimes doing stuff that isn't a good idea.

I can almost always avoid being triggered because I just avoid talking about these subjects with people I don't trust.  Unfortunately, sometimes it can happen even when people I trust just don't understand one small thing that I thought they understood.  It's so stupid that this happens because they didn't even do something wrong.

Anyway, a few weeks ago I got kind of worried because I started having trouble walking.  (I probably walk a bit Autistic but I don't have a noticeably different gait like some people with CP or neurological illnesses do.)

For periods of time, I started kind of stumbling forward or walking forward with one foot and dragging the other foot to the side.  One time, I actually couldn't stop walking and stand still and just stumbled back and forth while waiting for my friend to be ready to go.  Also, I started finding it really hard to move forward or up and was having to grab things and pull myself as much as possible.  At other times, I experienced a weird kind of sudden exhaustion where I would have to put my head down.

My idea was that this happened because I kept going places and doing stuff for three weeks without just sitting around and not thinking about things on the weekend (the walking problems appeared about a week and a half into this period).  As soon as I had a chance, I took a weekend to not move or do things, and since then, my walking is normal and most of my other moving is too.

I know that other Autistic people have things like this happen, but it makes me a little worried just because it hasn't happened to me before.  Also, this year my head has been involuntarily jerking to the side and dropping and rolling around and stuff.  I probably can attribute this to drinking a lot of caffeine, but both things make me nervous just in case they're a symptom of something.  If they aren't a symptom, neither of them really bothers me, but I'd like to ask the doctor about it just to know for sure.

I'll probably mention them to the doctor tomorrow, but it kind of sucks because I haven't told my doctor I'm Autistic and I won't be able to because I know I might get triggered if I do.  Since I can't explain that I'm under a lot of stress a lot and that it's not totally out of left field for me to have movement problems, I won't be able to give the doctor all the information about what's going on.

A while ago when I was posting about how I wished I could get help with things, a friend suggested that some mental health counselors are willing to help with cognitive problems.  This is something I would have to ask my doctor about to find out about, but that's something I won't ever be able to do at all because there's such a high likelihood of triggering things being said.

As a side note, sometimes I end up really upset when I go to doctors anyway because they give me instructions that I'm simply not able to follow.  I can't tell them that so it feels like I basically have no options.

15 October, 2013

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It seems like it's socially acceptable for "liberal" parents to say things like, "This is hard for me, I need time" as an excuse for saying offensive or hurtful things to their kids who are queer or transgender, and generally not making an effort to support them.  For some reason, this functions as a get out of jail free card to keep the parents from being seen as prejudiced or a bad parent, and I don't really think that is okay.

It's harder to actually belong to a marginalized group than it is to have your kid not turn out the way you were expecting.  Queer and trans people shouldn't have to deal with our parents being insulting and unhelpful on top of other things we have to deal with, and we definitely shouldn't be expected to act calm and patient when they're not even acting like parents.

30 September, 2013

achievements


My nice friend Steven Kapp came to visit and it seems necessary to acknowledge not just Steven’s niceness but the fact that we rode four different kinds of trains in two days.

Muni N Judah Outbound from Montgomery Station to 19th and Judah
Muni J Church from Church/24th to Church/18th and back
Caltrain to Redwood City
Muni N Judah from 9th and Judah to the ocean and back
BART from Daly City Station to San Francisco International Airport
and AirTran, the airport shuttle

I’m not trying to make anyone else feel inadequate but Lord, we are really stars of the railroad, aren’t we?

27 September, 2013

//

Recently I've been having some times when I kind of walk by stumbling forward without bending my knees and I also grab on to handles and railings to pull myself up and forward as much as possible instead of using the muscles in my legs to push myself up. I think it's just from walking a lot on those days and generally being exhausted as a person.

Anyway, I realized that if anyone asked me why I was walking like this or using things to grab and push off of, I would say, "I'm just doing it for attention," and I would believe it.

I don't think I'll ever know if this general orientation toward not believing in or fully feeling my negative emotions or discomfort is just an organic "part of my disability" or a side effect of how my disability and other things were treated while I was growing up. Either way, it pretty much defines me.

22 September, 2013

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There's something I think about when I see parents of disabled kids fussing about how disabled people should be more tolerant of murder or whatever other crappy things parents want to do. What I think about it is not going to change the mind of that kind of person, but it's still something I think about.

I am never going to be able to spend a single second of my life away from a disabled person and I am never going to be able to spend a second not thinking about how to manage my disability. I didn't get to spend the first few decades of my life without a disability. I don't get to walk out of the room away from the disabled person who I am the only caregiver for. I don't get to send the person to respite so I can get a break.

Yes of course it can still be tough and a lot of work to take care of someone, even if you can walk out of the room and take a break for a few hours or even for months or a year. But I don't need to put myself in a parent's shoes, because I've been doing it longer and harder.

12 September, 2013

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.

10 September, 2013

Support free living


The main reason I am unable to have any conversation about disability issues with people is because of their assumption (spoken or not) that I’m not really disabled, that I don’t have it bad enough to have an opinion.

I’m not saying my life is terrible, but I have spent the last few years settling into deepening layers of disappointment. I know that without any services, I might never be able to do anything but work--literally in the sense of dragging myself out of bed in the morning, going to work, coming home, and collapsing, hopefully getting some food into me on the way. This isn’t the worst problem anyone could have--at least my job is fun. At the same time, I used to want to also work on artistic things; I wish I could spend more time with my friends and make some new ones; I wish I could volunteer; I used to want to have kids someday.

The gradual giving up of these things is not by any stretch of the imagination comparable to someone who will die or be seriously unhappy or ill because of lack of services. It still bothers me sometimes.

I know that if I trundled on down to the Golden Gate Regional Center or whatever, they’d laugh in my face. That bothers me too.

The long list of things I do not find positive or nice or reasonable or anything other than infuriating: telling me how smart I am. Telling me how articulate I am. Telling me I need to acknowledge the difference between myself and people who actually get services--yeah, I do see the difference between us, they get services. That’s a big fucking difference as far as I’m concerned.

So that’s my bad attitude in a nutshell. I wish I could be more compassionate and rational but I got worn out about it pretty early on.

24 August, 2013

If you don't know who I am

When I graduated from Oberlin in 2011, I had an idea to make a post called "Is Oberlin a good college for students with mental disabilities?" so that prospective students with mental disabilities could get an impression of what it was like. I didn't get around to it in the first two years after college, and I already feel like it's been long enough that I can't really act like an expert on Oberlin. For one thing, there's a nonspeaking Autistic guy going there now and his presence may have changed things.

I do want to talk about a particular phenomenon though and I think it might be something to think about when it comes to any college that has a reputation like Oberlin's. It's from a comment I saw on Oberlin Confessional or ObieTalk, which were anonymous forums where students gossiped, trolled, and tried to find people to have sex with. Some of the discussions were more cerebral than others and this time, people were talking about whether Oberlin was as tolerant as people thought it was.

The comment was something like, "Most people at Oberlin don't understand my experiences or my background, and don't seem motivated to learn. They say they accept everyone, but you can't accept me if you don't know who I am."

It was better written than this and it really struck me. It also reminded me of some of my own experiences as an Autistic student.

I'm not afraid to say that the director of disability services at Oberlin was unhelpful to me. I've heard she did a lot of good things for mobility impaired students, but when it came to me she wasn't very willing to help me and often implied that my disability wasn't real. One time when she was telling me why she had taken away my priority registration, I mentioned that I was going to be a classics major and she said like I was proving her point, "Well the whole classics department practically has Asperger's, you'll be fine there!"

When I got a little older and was more political about things I started getting annoyed by the whole verbal-Autistic-person = geek stereotype, but even aside from the stereotype, there's this idea that as long as an environment is "geeky" or "awkward," it's automatically an accepting environment for Autistic people. We don't need accommodations, we just need geeks.

For me, being around "awkward" people is not that helpful. Sure I might have more to talk about with people who are really into pop culture and I might have a more similar sense of humor to people who identify as geeky or awkward. So on a superficial level, it's easier for me to be roommates with people like that or be seated next to people like that on a cross-country bus trip. Things will go smoothly, conversation-wise.

I'll even go further than that and say that sometimes, geeky or awkward environments can be more accepting places for people who are visibly different because of autism, mental health problems, or learning disabilities and they have often been more comfortable for me than environments that aren't oriented that way.

But:

1. In an academic setting, the teacher and other students being "awkward" doesn't have anything to do with whether the student will be accommodated for learning disabilities, auditory processing disabilities, anxiety, etc; or how the teacher will respond if the student is unable to complete work as fast as other students or in a standard way because of her disability. (This really depended--one thing about Oberlin is that the professors have a lot of freedom about how they do stuff so my professors were able to excuse things or let me do things differently if they wanted to. Obviously, some didn't want to.)

2. When it comes to forming close friendships or close relationships, whether someone is "awkward" doesn't have anything to do with whether they understand what it's like to have a disability and whether they have empathy and respect for someone who's not able to do the things they consider normal. I've had some friends I really got along with on a doing-stuff-together-and-talking-about-stuff level, but who I wouldn't be able to have a really deep friendship with because there are parts of my life that will be a problem or just incomprehensible to them.

3. In both settings, "awkwardness" doesn't prevent non-disabled people from using the r-word or saying fucked up things about Autistic people or disabled people in general, or non-disabled professors teaching Disability Studies classes to mostly non-disabled people without anyone ever acknowledging their privilege, or groups for disabled students never really getting off the ground, or disability not being included when people are talking about marginalized identities.

So that's pretty much what I have to say about Oberlin. And I actually really liked going to Oberlin! But there are limits to "awkwardness."

30 July, 2013

Guess who's opening the door at Starbucks now.

24 July, 2013

The Door Police

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

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

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

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

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

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

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

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

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

23 July, 2013

J. Cole's "autism lyric"


This really just blends into the woodwork but since I happened to end up complaining about it in real life, here is a post about J. Cole’s apology for his verse in Drake’s “Jodeci Freestyle,” where he used “autistic, retarded” as an insult.

So, the apology isn’t great anyway, but the big thing I noticed is that he only talked about autism--he didn’t apologize to people with intellectual disabilities or their families, even though he used the word “retarded.”  I can’t really blame J. Cole for this because it seems like no one told him.  For example, the Anna Kennedy/Anti-Bullying Alliance petition against the lyric specifically asked him to apologize to people with autism and our families, and did not mention the other PWD who are hurt by the R-word.

Yes, J. Cole is stupid for not realizing that he should be apologizing to all people with developmental disabilities, but how stupid are organizations and activists that actually focus on disability for not asking him to do that?

There was a time when all developmental disability was assumed to be intellectual disability and people were confused by the word autism.  Now the opposite seems to have happened--for example, when people find out that I work for someone who is nonspeaking, they immediately assume she has autism, instead of realizing that there are many disabilities that could cause someone to be nonspeaking. In general, people will often describe anyone with a developmental disability as being “autistic”--even though intellectual disability is the most common developmental disability!

It’s hard for me to articulate why this makes me so angry, but I think part of it is that it illuminates how most people don’t learn basic information about disabilities.  Right now autism is being blown up as some kind of dramatic health crisis so it’s the only developmental disability the average person knows about and the catch-all term for all disabilities.  It’s not so nice for people with autism to be treated like the four horsemen of the apocalypse, but it’s also terrible that people with intellectual disabilities are so ignored by the average person that J. Cole doesn’t even realize he used their diagnosis as an insult, and neither do autism advocates. (I’d love to say just autism parents, but I’ve seen some Autistic people who didn’t notice either.)

05 July, 2013

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.

17 May, 2013

We Just Don't Know

Today my boss (Anna), her dad (Richard), and I were riding in the car. As Richard parked the car a disabled young man went by with his staff person and Richard recognized him from a class Anna had taken. He started waving at the man through the car window and the man stopped walking and turned to wave back at him. The young man's staff person, who was facing away from us, urged him to keep going down the street. The man tried to keep waving at Richard. The staff person, still not looking to see what the man was waving at, moved into his line of vision and tried to obstruct him from looking in our direction. He successfully got his client to stop waving and continue down the street.

Discussion questions:

1. Did the staff person assume the disabled man was not greeting a person, but just smiling and waving at nothing?

2. Or, did he just think that it was a waste of time for the man to interact with someone?

(Edit a few months later: I now know that these guys are Deaf so my impression of the situation was at least somewhat unfair--the staff person wasn't trying to obstruct his client's vision, just get where he could sign to him.)

08 April, 2013

Leave Trains Alone

I started this really important tumblr for the month of April.

STEP AWAY FROM MY FUCKING TRAIN!!

We all know how we feel about trains, they are really good. If I could sleep on a train, wear clothes made out of old train parts, and eat trains for breakfast, I wouldn't complain about anything. On a more serious note, who cares. As I say in the trains tumblr, "oh no an Autistic person likes something this is the worst day of my life."

I don't feel like articulating this stuff but the trains tumblr is a safe place for Autistic people to love on trains and even be angry about it. It's okay to be ironic. It's even okay to post pictures of buses instead of trains. Even airplanes if they are especially good ones.

24 March, 2013

//

(1)

People are well-intentioned when they say that anyone can do ___ regardless of their disability, but it actually just makes them look ignorant. I understand the idea that a lot of people with disabilities who would want to do something and could do it are not receiving the support they need, and too many young PWDs are told they'll never be able to do the things they aspire to do.

If someone wants to do something you shouldn't tell them they can't do it, but that's different from making generalizations about everyone. My personal least favorite is "everyone can work." Well, for example, how is someone going to work if they can't move anything except their eyes and aren't suited for a job that they could perform just with their eyes? How is someone going to work if they're so depressed they can't get out of bed in the morning or make basic decisions? How is someone going to work if they're consumed by a desire to physically injure themselves all the time and it takes every bit of energy not to do that?

I wish this wasn't the case, but I hear people using the phrase "everyone can work" in almost an aggressive way, as if it's ignorant for a non-disabled person to say some disabled people can't work, or cynical or lazy of a disabled person to say that they themselves can't work. I think this shows a fundamental lack of empathy and if you don't understand why some disabled people can't work, then you shouldn't even be talking about disability and work because you are really uneducated.

Sometimes it seems like providers, family members, and even self-advocates have a homogenous idea of "disabled people" and they don't make room in their head for the large percentage of disabled people who don't fit their image.

(1) Actually I think Ratatouille does a good job addressing this issue, by acknowledging the difference between "everyone can be a great artist" and "a great artist can come from anywhere."

2.

My client cannot talk and often doesn't respond to things quickly. Her volition is pretty confusing to me when it comes to movement so all I can say is that her movement can be pretty telling, but I sure don't expect her to move on schedule or on command.

I feel like all this is implied with the vague label of "profound disabilities" and presumably we all know about people with "profound disabilities," so why is everyone so confused? I don't know what to say when people ask me why she doesn't look at them or answer them. I don't mean people with no experience, but people who are at programs with their disabled family member or client, or are even running the programs.

Also the eternal question, "Does she understand everything I'm saying?" to which the answer is a resounding, "I don't know."

Maybe I'm just a crappy person and I can tell you the idea has occurred to me before, but I get extremely impatient. It feels like a lot of people either demand responses from her due to their wholly unfounded assumptions that she can give one, or they just don't think about her at all. The idea that someone without obvious communication might enjoy some attention is just as baffling as the idea of someone without obvious communication existing in the first place.

I've sometimes gotten the impression that stuff that's "for developmentally disabled people" does not try to be inclusive of developmentally disabled people with certain support needs or that people who are "interested in working with developmentally disabled people" do not find it interesting to work with developmentally disabled people with certain support needs. I'm glad to say I haven't seen any extreme examples of this in the 5 months I've been working at this job--just impressions--but Single Dad Disabled Daughter writes about some infuriating stuff.

3.

On the other hand, I have a disability and I do have a job and answer people when they talk to me. So people who like disabled people who do those things should like me, right?

Well, not really.

I'm not sure why it is that a lot of people who claim to like and enjoy people with developmental disabilities, or even work with them, have a problem with people who are slower than they are, can't do things that they can do, or just look or act different. When they meet someone who they don't immediately recognize as disabled or who they aren't meeting in a context where they would expect to meet a disabled person, the friendliness they would show to an Actual Disabled Person is not there at all, and they are just as contemptuous as anyone else would be about the person's impairment.

The only thing I can think of is that when these people relate positively to disabled people who fit their idea of disabled people, they're not doing so because they actually like people regardless of disability, or even because they like personality traits that sometimes come from living with certain mental disabilities. It's because they've created a new category, "developmentally disabled people," that they see as different from other people and relate to differently from the way they relate to other people.  If a developmentally disabled person is too much of a peer, or looks or acts too similar to non-disabled people, they can't put them in the "developmentally disabled people" category, so they can't accept their disability.

Maybe it's an Uncanny Valley thing but I don't really care because I am coming out of the following situation.

I had a friend who spent a lot of time working with a group of people with developmental disabilities who are quite different from most people I know, and I knew that she liked that group of people a lot. Technically, she knew that I had a disability, and even professed to support disability rights. That sounds like a pretty good deal on a friend right? It was a long time before I admitted to myself that this person made me feel scared and uncomfortable about nearly everything related to my disability. When we met someone who I suspected might have a disability, I cringed inwardly because I knew she would criticize the person later for being too slow or too weird. I was afraid for her to meet my closest friends, who are all Autistic or crazy, because I didn't know if they would be able to hide their disabilities well enough to avoid being criticized by her.

There are some people who you know are friends with you because you're just barely good enough for them. And actually, there are people who are friends with you because you're bad enough for them, too--you're a "special needs" person to them, not an equal. Maybe I'm becoming an asshole but I have no interest in either type of friend anymore.

23 March, 2013

for your future reference

I'd just like to use this space to register my disappointment with people who think that autism is the only disability.

For example: fairly clueless/uninvolved people who think that anyone who can't talk has autism, or even think that anyone with a disability has autism.

Parents/family members who say they're talking about people with "special needs" but only talk about autism, or assume that any disabled person has autism.

People with autism who talk about issues that affect many people with different disabilities, but talk about the issues like they are autism-specific.

People who talk about "disability" or "disabled people," but only care about autism.

And many more.

15 March, 2013

mixed feelings

The family I work for went to a protest against the cuts to classes, programs, and teachers at City College of San Francisco. CCSF offers non-credit classes aimed at disabled people which cover all kinds of subjects, from arts and crafts to trying to get a job. Anna goes to CCSF drama classes three days a week and clearly likes getting to see people she knows, listen to music, and participate as much as she can in the acting and dancing. It's a big part of her life and it doesn't even cost anything, so it's horrible to think that this opportunity could be taken away from her and all the other people who benefit from it.

Anna got to be on the news representing the point of view of disabled students, and her mom was interviewed explaining how the cuts would impact her.

I thought it was cool to see people I really like on TV talking about something really important, and Anna has a great sad face. But I also felt frustrated, just like I do about most representations of disabled people in the news. I've been in class with lots of the other developmentally disabled students who were at the protest, and most of them could have answered questions with speech, sign language, or AAC, some of them very fluently. Instead, the reporter chose Anna, who couldn't answer the questions and had to have her mom speak for her.

Of course, Anna is great and I think everyone should pay more attention to the point of view of people who don't use language. But if someone really wanted to put an interview with Anna on TV, they would need to really get to know her and learn about how she communicates. Someone who was willing and able to put in enough time could make a longer video showing Anna's feelings about her classes. But Anna couldn't give an interview in the form of a couple of sentences on the evening news.

When looking for an interview in the form of a couple of sentences, the reporters decided to go past all of the protesters with developmental disabilities (many of whom were older adults and not with family members) who could have directly talked about their experience in exactly that form. They found someone who couldn't talk about her experiences in that form, and was with her parents, and had to have her parents talk about her experience. Surprise surprise.

Conventional vs. unconventional timers and problems with people in the household

So a big issue with timers is how other people are going to feel about them, especially people you live with. I guess I'm assuming a reader who is making some decisions about how to conduct their life and possibly having to explain some things about their disability to roommates or family members.

If you use a conventional timer (which I guess regular people mostly use for cooking?) then it's confusing to people because you're obviously using it for things that don't have to do with cooking and sometimes it seems like you're not using it for anything at all. Also, it can be a problem because a lot of people find the sound of a timer going off to be really unpleasant and/or stressful and then it's an issue of being considerate to the people you live with.

Actually, even unconventional timers like TV shows and singing are things that you can have to explain. If your family is really fussy about your disability, they might get upset because they perceive watching TV or listening to music as a leisure activity and they think that you should be doing something constructive. Even if you are doing something constructive and you try to explain that TV and music are making it possible for you to do it, they might just think it's an excuse.

Something that I find frustrating is that even if people are not annoyed with me for watching TV a lot, they don't understand my relationship to TV. Sorry that just sounded ridiculous, but what I mean is that people think I'm just really into watching TV shows and I want to sit down and watch TV shows with them. To me structuring my time around watching TV, instead of structuring TV around what I want to get done, is a waste of time, energy, and episodes. It can be fun sometimes just like any waste of time and energy can be fun, but it's a completely different activity from my usual TV watching (TV as timer).

Even if I do sit down and watch TV with someone (which is fine as a leisure activity and sometimes I'm prepared to do leisure activities), I feel tense because I'm not used to just watching TV and doing nothing else, so I like to eat, play games, or be on the computer at the same time. Obviously some people don't like this much so I try to make my secondary activity be eating or drinking because it bothers people less. Also, if I get drunk enough, dealing with being drunk can be the secondary activity.

I guess it's kind of a stupid thing for me to take personally but it can be hard for me to know that other people perceive me as doing leisure activities all the time when I am literally working hard at something right then.

Also there's the fact that people are a bit less likely to put up with something that mildly inconveniences or annoys them if they think you're doing a leisure activity than if they think of it as an actual support that you need. Some disabled people might think it's good if singing in the shower helps a person take showers properly, because it doesn't come off as different from other people. But it is also hard if someone says it's annoying to hear you singing in the shower, and they don't understand that by saying that they are making it hard for you to take care of your hygiene which affects your quality of life.

Also if you don't understand about timers

Something that I find tough is that I don't really know how to describe the daily effects of my disability to people and the only way I feel like I can do it is by just showing people or telling people about things that I need to do to function.

The problem is, it seems like a lot of people can't extrapolate what's going on from what I show them, and some people's only reaction to me saying, "See, I have to do this to do this" is to encourage me to do something that is a more common way of dealing with things. I wish people could try to understand what I'm like by seeing that I have to write things on my hands and my computer so I can always see them, but it seems like most people just look at this strategy and see a problem and try to tell me that I should write stuff in a special book (which it would be harder for me to use because it would take more memory and energy to check what it says).

Writing on myself particularly is something that people have always been kind of distressed about and the only reason I can see for this is a bunch of negative associations that are clearly associated with disability. People usually see it as something that looks bad because it clearly indicates that someone has thinking and memory problems, but when I was growing up I was also told that I shouldn't do it because it would imply that I'm the kind of person who would self injure.

It's not really an issue for me that someone might think I have problems with my memory or self-injury because those things are true and I don't think that indicates anything bad about me.

But anyway, I just really wish that people could understand what's wrong with me just by looking at things I have to do, but if I can't even explain to other people what's wrong with me then I guess it's not really fair to expect them to figure it out when I can't.

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

13 March, 2013

PS. I also told my friend how I find it offensive when I describe my job to people and they'll say things like "That must make you feel good, helping someone out." Then I automatically think the person is an idiot. My friend, who works with kids, said she doesn't exactly find it offensive but it still makes the person unappealing. She said it seems like people can't relate to the idea of someone actually liking that kind of work so they assume it has something to do with wanting to do good deeds. All they can think about someone who works with kids or disabled people is, "Oh, they must like feeling good about themselves."

She said that she doesn't understand the appeal of working in an office and that when she sees people in suits going by, she thinks, "Oh, they must like money."

my dream is a dead end

I'm kind of in a brain fog but I realized I've never said this straight out. I kind of want to say it to my Dream Job family just so they know they are the Dream Job and I will never leave, but I guess no one needs a big avalanche of Amanda feelings to fall on them. So I will say it here.

Plus I seriously do think this is a problem.

I am a career direct support worker. We could use a bunch of words for this, like aide, staff person, nursing assistant, personal care assistant, caregiver, etc. But for me I feel like the difference is whether your job is about an action or a person. Some jobs with people with disabilities (or kids or seniors) that are about action are like therapist, doctor, teacher, social worker, etc. You're supposed to be improving the person's abilities or solving some of their problems. Some people who do these jobs are doing great stuff. Some are not. But the job is focused on changing/doing something.

Support work is about a person or people. In a bad support job, like in an institution, you're supposed to control people. In a better support job, you just help a person with the things they need help with in the course of a day. It's not like you don't expect the person to ever change when you're doing support work, and in some cases you might hope that you affect the person's life positively, but the focus of the job isn't change. It's just doing what the person needs/wants.

I got interested in working with people with disabilities just because I like being around other people with disabilities. So I was always interested in doing support work, not being a teacher or therapist or something. It's fine if people are into being a teacher or therapist, but sometimes I feel sad because I feel like I'm one of the only support workers I know who has always wanted to be a support worker and wants to be a support worker forever.

It seems like for a lot of people, direct support work is like being a cashier. It's fine for someone to be a cashier if they're doing it as a short term thing but the kind of people I grew up with would not understand how someone could be a cashier for their whole life and not have a problem with it. Most young people I've known who do direct support work are either in school to do something else (usually an action-based job) or are doing it to "have an experience" or something. I think this is too bad.

Of course, I really don't think any job should be considered less valuable than other jobs. I don't like the idea that there are only a few jobs that people should want and everyone who doesn't have one of those jobs should be unhappy and spend their time trying to get one of the valuable jobs. But when it comes to this particular issue, I find it especially frustrating. On a philosophical level, why is it that people get paid less and get less respect for supporting someone, and get so much money and status for fixing someone? Practically, it's generally better for someone to have the same support person for a long time so they can have someone working for them who actually fits their needs and knows how they like to do things.

08 March, 2013

Anna is not that nice

I work for a woman named Anna who people are always saying is sweet and nice. Her dad gave me permission to blog about her, but he might not have done that if I told him that when another client at her day program kept saying, "Anna's nice, she's a good girl," I said under my breath, "No, not really." I hope no one heard this because it doesn't sound very complimentary of Anna, but I don't think saying she's a good girl is very complimentary either. I can't fully explain why it annoys me when people who don't see her much describe her that way.

Obviously, my reaction isn't because I think Anna is a mean person. She's just fine on the sweetness/niceness scale, but it's not something I would say when describing her. I would say: she's very particular about doing the things she likes and having her favorite things around her. She's kind of dignified and she plays her cards close to the chest, maybe because of her disability or maybe just because it's the dignified way to be. There are a few things that she immediately reacts to, but usually when Anna meets someone or has an experience, she takes a while to process the situation and then shows how she feels later. She likes throwing things and ripping up napkins and paper.

First and foremost I would describe Anna as someone who likes to have her own way, which I think is not a problem because Anna's way is pretty cool and doesn't involve making bombs or setting people on fire. I like that her parents don't treat her as someone who has "behavior problems" just because she has strong preferences and is good at expressing what she wants. There is a lot to commend about a disabled person who is confident in herself--so many people think there's something sinister about a disabled person who really likes some things and really dislikes others. Even writing this, I feel like I have to shy away from triggering some stereotype of a person who will scream and break things because they didn't get to eat their favorite kind of sandwich. It seems like there are only two ideas about disabled people--an overwhelmingly good/sweet idea, and the idea of someone who has preferences, and is therefore totally dangerous or a burden on other people (because people have to accommodate them which is a fate worse than death).

Where's the middle ground for someone who has lots of preferences, but in a way that the people around her thoroughly enjoy? Or who isn't mystically "full of love," but is just as capable of love as everyone else?

I'm not really sure, and maybe I'm the one limiting Anna by scowling inwardly when people say how good she is. But it just seems like a way of describing someone that is fundamentally impersonal and ill-fitting, especially for her.

21 February, 2013

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

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

19 February, 2013

Official Reactions

(Notes: This post contains references, mostly nominal, to a few things that trigger a lot of people, particularly violence, meat eating, and “national tragedies.” It’s not a very “tight” post because I am trying to explore some ideas I’m not sure about. It’s also very US-centric and I don’t know if people act this way in other countries. Finally, I am not a trauma survivor.)

Is a horrified reaction to images of violence more important than your efforts against violence?

I believe it’s not.

It seems to me like people’s reaction to the sight of violence or graphic descriptions of violence is held up as a higher indicator of their ethics than anything they actually are doing or think. Really, it either indicates who they are emotionally or their willingness to conform to standards of appropriate behavior.

For example, I knew a guy who, when a scene of male on female rape appeared in a movie or TV show, would comment, “It’s so hard for me to watch things like this,” but not in the context of asking for it to be turned off. Obviously there’s nothing wrong with him feeling that way, but it seems like rather than just avoiding things they cannot watch, people announce that they can’t watch something as though other people need to know this, and they sometimes even continue watching.

It’s really not worth mentioning except for practical purposes. First of all, despite the common performance of not being able to handle certain images of fictional or nonfictional violence, images like violent murder mysteries, slasher movies, and “true crime” books and TV shows are very popular. If people really couldn’t stand to hear or think about violent events, then they wouldn’t be reported on over and over.

On the subject of things that are reported on over and over, I think it’s disingenuous for people to act severely personally affected by 9/11 when they are not from New York, didn’t lose anyone, and didn’t have mental health problems focused on the event. Sorry to be so blunt but I don’t see the reasoning for someone from California or Utah thinking that they can claim 9/11 as a universal American experience. It didn’t happen to them and it’s just a symptom of the idea that we have to perform the official reactions instead of our own.

Similarly, when “a nation mourns” or “a nation’s heart breaks” because of a mass murder, you can count me out. Any reaction that I have to hearing about people being murdered is personal, not national, and I also know that there are many more people who I don’t hear about because their deaths aren’t considered tragic in the right way. It’s more important to me to think about how murders can be prevented than it is to pretend my heart is broken by something unrelated to me.

I’m pretty self conscious writing this because it’s probably the most stereotypically autistic thing I’ve ever said. It would be really easy for someone to say that I feel this way because I don’t have empathy or don’t understand the emotions most people have. But I obviously can’t convince someone otherwise if they choose to perceive me that way. The truth is this performance of discomfort and grief bothers me because I think it accomplishes the opposite of what’s necessary to make the world better.

First of all, it alienates the people who should be supported the most. If someone is very familiar with violence or abuse, they might be used to “horrific” stories and images. They might not react to them with obvious distress. When they hear about a violent crime, they might immediately start thinking about how to prevent similar crimes, instead of expressing grief. They might make jokes about abuse or speak about it bluntly. People who act this way are treated like they’re insensitive, inappropriate, and tasteless. I’m not saying that everyone needs to emulate them, but it’s a problem when people who are actually survivors, and/or are working tirelessly to end violence, can be perceived as not caring about violence because they don’t have the same reaction as people who are less involved.

On the other hand, some people who have survived violence are very distressed by images and stories of violence. To some extent, other people will be sympathetic to the needs of a person like this. If someone survived a school shooting and has panic attacks when he sees school shooting related images, people in his life might respect that and not show him a movie or TV show with a school shooting. But this accommodation might be allowed more because he’s seen as a broken victim who needs to be taken care of, than because people think his reaction is reasonable.

If he acts too angry and “entitled” about his triggers-- “What the fuck is wrong with you? You saw this movie before but still told me it was okay to watch it!”--then he’s “taking it too far.” People generally think of someone who has serious reactions to triggers as a person who needs an unfair amount of support. He shouldn’t act like it’s his right for people to be sensitive to his triggers. If his trauma is less impressive--if it was a long time ago or what happened isn’t quite shocking enough, or God forbid he even refused to disclose it--then people see him as even more unreasonable and spoiled.

And even if they respect his feelings, he’s still an outsider in a discussion of school shootings, because his experience is so different from the average person’s and for some reason, the average experience is the most important.

I haven’t thought of this since I was 12, but immediately after 9/11 my school chorus began to prepare for a 9/11 tribute assembly where we would sing patriotic and inspirational songs. We were far enough from the city that only one student at my school, “Lauren,” had lost a parent. On the day of the assembly I heard another girl ask a teacher: “But what about Lauren?”

“Don’t worry, I’m sure she won’t have to go to the assembly,” the teacher said.

I remember thinking how weird it was for us to be having this assembly--presumably to show we cared about 9/11--when it seemed likely to upset the person at school who was most affected by 9/11. It should be obvious that vague communal responses to “tragedy” are not centered around the people who are most affected, but on the emotions of people further away. If not, why are the emotions of survivors inappropriate, insensitive, unhealthy, or, at best, the “special needs” of a minority who must be accommodated?

I think the fetishizing of the emotional-but-shallow reaction encourages unethical behavior. I’m not trying to pick on people who eat meat (I eat meat sometimes too), but I think it’s a serious problem how horrified people will act about the sight of a dead pig or the idea of killing a pig, when they see no problem with eating pork. I’ve even heard someone imply she was morally superior to people who didn’t get upset by the sight of dead pigs--again, she was someone who ate dead pigs. This has implications far beyond eating meat or not eating meat and it can easily be seen in how people have different opinions about the deaths of people they can relate to--children, white people, non-disabled people, Americans--and people who seem too far away to be upset about.

It’s probably natural to be more upset about the death of a child, or someone you had a lot in common with, or the type of person you idealize. I’d probably have more of an emotional reaction to the murder of someone who lived in my city and had the same interests as me and had a disability. The thing is though that this reaction is meaningless. I shouldn’t let it dictate my opinion, because I should care equally about the murder of someone across the world who had nothing in common with me, or if I don’t, I should act like I do.

If I care more about my reaction to something that doesn’t directly affect me than I care about the reactions of people who are affected, or the facts of what happened, or how to keep it from happening again, then it’s like my idea of how to be a good person is based only in having feelings about things--not listening to and respecting people, not paying attention and researching what’s going on, not working to make things better.

This may surprise you but I think people are pretty bad already. But a great way to make yourself worse is to believe that you’re good because you did something completely useless that took no effort.

05 February, 2013

More on this later but I think a big reason for my "invisibility" is how much I lie and cover for myself. I don't even see it. Sometimes I try to keep detailed journals and I notice a bunch of things happening that once they're on paper I know don't happen to most people, but in real time I don't even register what's happening before I start lying about it.