22 August, 2014

A fun experiment!

Imagine a rich, successful executive has a personal assistant. His personal assistant is knocking at the door in the morning and he finally gets ready and comes down. The assistant says, "What took you so long? I want to go shopping."

The executive says, "That's not what I was planning to do today."

The assistant says, "Well, I need to go shopping and I haven't done it in a long time. Come on, it'll be fun." She proceeds to bring him along with her as she goes shopping, does all her errands, and hangs out with her friends. What's in it for him is that he gets a chance to get some coffee or something.

If this seems weird and confusing, instead imagine that a disabled person has a personal assistant who is behaving this way. I don't have to imagine because I know lots of PAs who do this. It is jacked up, but completely socially acceptable. Why?

I'm guessing because the client is not able to use words to tell them to stop, or is easily convinced to be agreeable and not express their real preferences, or because if they do complain, the PA can just say, "That person just isn't patient or empathetic to my needs because of their disability," or, "That person is just confused and being contrary because they have dementia." AND, because clients are often not able to fire their PA, or at least can't do so immediately/directly. (For example they might be able to tell the agency providing them services that they don't like this PA, but if they need help eating, it would take a lot to just tell someone, "Okay, you're fired," in the middle of dinner. Especially if someone needs a PA with them at all times, that makes it hard to stand up to someone. Or someone might think, "Well, this is kind of annoying, but it could be a lot worse. I might not find someone else who is friendly and knows how to handle all my medical needs.")

I just think it sucks, a lot, that some PAs think they can just schedule their client's life around whatever they want to do. Even if someone can't communicate very much and you have to guess what they want to do, you should still do that, not just pretend that you think your blind client wants to go to a silent movie with you or whatever. You are doing a job. You are getting paid. If you want to do whatever you want all the time, then don't have a job, because that is not what a job is, and in no other job is it so acceptable to railroad over the preferences of the person who should be your boss.

07 August, 2014

Soft and lovely your way to a better tomorrow!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

22 July, 2014

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

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

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

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

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

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

Here are some of my pictures that I consider bad:

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

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


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

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

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

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

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

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

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

03 July, 2014

Round and round in my bed life

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

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

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

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

Right now my schedule is like this:

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

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

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

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

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

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

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

Photo of me drinking coffee in a diner with very unkempt hair

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

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

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

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

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

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

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

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

02 July, 2014

Compare and contrast

I just realized something weird about my feelings.  Actually, I'm guessing this is true of a lot of people and I'm going to write about in the second person, but there's always a possibility I'm just a huge freak.

Basically, things look better when you are comparing them to something worse.  This means that the worse someone is, the more their behavior can impress you.

For example, if your best friend usually criticizes you and insults everything you say, you will feel so special when he does tell you, "That was really smart."  He will seem really nice, and you'll feel like what he said was really meaningful because you waited such a long time to hear it.

If your boyfriend always hits you when he's mad, it will seem amazing if he gets mad and doesn't hit you.  It will seem like he's great for controlling himself, like he's really working hard to treat you well.

Actually neither of these people is nice!  It doesn't have to be this extreme.  But the point is you give more credit to people who deserve less credit.  Meanwhile, if someone is consistently kind to you, you never get the high of being shocked by an ordinary display of kindness.  Their kindness blends into itself and doesn't impress you as much as someone not hitting you 1% of the time.

I think I first got exposed to this idea in the form of a piece I read about being nostalgic for bad relationships.  It was basically about how bad relationships have some really exciting and good moments when your partner stops being awful for a minute and you're so excited about it.  Then you end up being nostalgic when you're in a relationship with a good person, because you don't get excited the same way. (If someone could find this piece, I'd love to link to it--I just couldn't find it.)

This is pretty obvious, I guess, but I was thrilled to notice myself having one of these reactions today because I could self-correct.  Here's to prioritizing people who are actually good to you most of the time.

19 May, 2014


I've noticed that some portrayals of the disability experience in fiction are pretty much diametrically opposed to the disability experience in real life.

In fiction:
  • Employers have no choice but to hire disabled applicants even when they are not qualified, because they could be sued for not hiring a disabled person
  • Disabled people's work is disproportionately rewarded even when it's bad, because people feel sorry for us or are just positively biased toward us
  • It's easy and profitable to fake a disability in order to get disability benefits from the government
  • Professors have to provide ridiculous accommodations for students who say they are disabled, when in fact those students are lazy or not smart enough to be in college
  • People with mental disabilities are the perpetrators of violent crimes
  • A "black transgender disabled lesbian" has a big advantage in life because people want to give her jobs and other opportunities
In reality:
  • Employers often do not want to hire disabled applicants because of their mistaken ideas about what our disability means.  It's easy for them to discriminate against us because they can just say "We didn't think you'd be a good fit for the job" or something like that.  They also can fire someone for being disabled if they just pretend to fire them for a different reason.  Even if an employer admits that they are not hiring someone or firing them because they are disabled, suing someone is expensive.
  • Some disabled people are legally allowed to be paid a fraction of minimum wage if their employer says they cannot work as fast as a non-disabled person. For example, Goodwill does this, and plenty of people think it is acceptable. (Articles about Goodwill: here and here, and many comments asserting that disabled people are not good enough workers to deserve minimum wage: here, here, and here; and saying that people who need accommodations do not deserve minimum wage, even though accommodations are their legal right: here).
  • In the US and the UK, it is a lot of work to even apply for disability benefits (more work than some disabled people can do); many disabled people are denied benefits for stupid reasons; and the benefits are not very much.  You also then can't save money, or you will lose your benefits.
  • It's a lot of work to get accommodations in college (again, more work than some disabled people can do; my post about that here); and even if you do all the work to get accommodations, a professor might refuse to give them to you if they feel like it.  This happened to someone I knew whose professor thought it was stupid for her to get a note-taker, so he dragged his feet on arranging it and then tried to arrange it in a way that revealed the disabled student's identity, which he was not allowed to do.  Many disabled students in college are struggling due to lack of support, and about half the (smart, hardworking) disabled kids I met in college had to drop out.  Still, some people imagine that disabled students are coasting through life on a fluffy cloud of accommodations (here).
  • People with mental disabilities are disproportionately the victims of violent crimes and society often makes excuses for the criminals, causing this type of crime to seem more and more acceptable for potential murderers and abusers.
  • A black transgender disabled lesbian has to deal with racism, transphobia, ableism, homophobia, and sexism; the intersections thereof; and feeling like an outsider even in minority communities.  Plus, she's constantly invoked as a joke to show how bad "political correctness" supposedly is.
So, you have to ask: why is being disabled portrayed as being so easy and coming with so many opportunities, when in fact it comes with a lot of disadvantages?  Watching TV (and hearing some people talk), you would think that we live in a society ruled by disabled people.

09 March, 2014


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

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

If you want to know what a mushball looks like, take a piece of soft bread, squish it into a ball, and get it wet.  That is approximately me.
  • droopy
  • doesn't react to new situations
  • doesn't like talking
  • is not up for reading anything difficult or unfamiliar
  • probably isn't good at writing, either
  • likes to eat, read simple things, and watch TV, while propped up with pillows so it doesn't have to suffer the indignity of trying to sit up on its own
Actually, if you know me in person this might not be your impression of me! That's because I can usually corral myself if I have to be around people or do tasks that I need to focus on.  I'm glad about that because a full-time mushball life would be boring (I also would not be able to have a job or anything), but I still need to return to my natural mushball state or everything gets totally out of control.

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

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

So, mush is important is what I'm saying.  But not mush is important too.  It's depressing and not very satisfying if all I do is lie in bed, eat, and not talk to anyone, but if I stay at home that's probably what is going to happen.  It feels like my body hoards mush time and is pulled toward my bed like a magnet, although it probably has more to do with cueing.  If there are cues making me feel like this is mush time, then my body/brain aren't going to be ready to tense up.
  • dressed = non-mush
  • pajamas = mush
  • in my room = mush
  • outside = non-mush
  • speaking = non-mush
  • makeup = non-mush
  • contacts = non-mush
  • glasses = mush
This explains why certain things upset me and make it hard to focus, like talking on the phone in my bedroom or going outside without makeup on.  I had a lot of trouble a few years ago because my eyes were being irritated by my contacts and I was supposed to wear glasses all the time, but I just couldn't do anything very well when I was wearing glasses instead of contacts and started having mental health issues because I was so frustrated by my inability to do things.

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

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

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

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

a children's book called mush sled dogs of the iditarod