04 December, 2014

content warning for violence and racism

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

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

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

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

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

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

02 November, 2014

Breakupversary

It's Autistics Speaking Day. I think I only completed an ASDay post on the first year, 2010, and since I don't blog very often, I'm not sure if I would have decided to write one this year. As it turns out, I didn't even remember November 1 was Autistics Speaking Day, even though I've been watching November 1 coming for quite a while. That's because November 1, 2013, was the day I stopped being in an abusive relationship.

That was your trigger warning. I'm not sure if this counts as an ASDay post or not. It's aimed at Autistic people, disabled people, and to some extent, anyone who is part of a marginalized group and sees that as an important part of their identity.

I have written about my abusive relationship, and I have more to say in the future. What I have to say today is: I didn't know that an abusive relationship could feel the way mine did. I generally didn't feel scared of my abuser or like I was being hurt; instead, from the beginning of the relationship, I was afraid that I was abusing and hurting her. I saw her as a very weak, vulnerable person who I was obligated to protect, and even when I was really unhappy and wanted out, I didn't see it that way. I saw myself as being stressed because my girlfriend needed more help than I could consistently provide. Or, towards the end, I thought that I just was too disabled, or too selfish, or not disciplined enough, to do everything she needed.

It wasn't until after the relationship ended that I became afraid of her. When we were together, my perception of the world was so absorbed into hers that I didn't realize how little control I had over my choices, how afraid I was of displeasing her, and how little she cared about my well-being. It's pretty scary that her thoughts and opinions became mine, that even disagreeing with her in my head was really difficult; but naturally, I wasn't scared at the time, because I didn't have enough control over my mind to be scared.

A few times I cried uncontrollably for hours; I felt hopeless; I got sick. But I always traced it to sources other than my relationship. The closest I ever got was thinking that really bad things happened because I didn't respond to her the right way, and if I just did it better next time, things would be okay. I could handle her.

To be clear, my ex was also Autistic, and had various other disabilities. Her disabilities played a major role in why I stayed with her and was afraid to question the nature of our relationship. At the time, I had a few rationalizations for it:

  1. It would be wrong to think that she might be exaggerating or lying about certain needs, or using her disabilities as an excuse for her behavior--even though that was clearly happening sometimes, I refused to consider it.
  2. I should be loyal to her because she was disabled. It was right for me to stay with her and help her because disabled people should look out for each other.
  3. If I didn't stay with her, she would be alone because other people didn't understand her disabilities and discriminated against her. She wouldn't get the help she needed, and she might even die. A few times she told me that because I had upset her, she might get institutionalized and they would kill her.

As comforting as it might be to imagine that she was faking or lying about her disabilities, that the person who did this to me wasn't Autistic--well, I knew her well enough to know she definitely is Autistic. I also know that it doesn't matter, that if she wasn't really Autistic, or wasn't really disabled, that wouldn't make this any better.

This is a friendly reminder that marginalized people can be abusive or dangerous just like everyone else; and that some social justice ideas are right most of the time, but have exceptions. You don't have to always agree with someone just because they are marginalized. If someone is obviously lying, you shouldn't just accept it because they are marginalized. Disabled people aren't usually lying about their disabilities or using them as an excuse, but it does happen, and you don't have to put up with it if it's hurting you.

Maybe most importantly, not everyone who shares an experience with you is trustworthy. Making Autistic friends was very important to me and I'm now at a point where most of my close friends are Autistic. That does not mean all Autistic people are my friends or have my back, or that I should have their back. This sounds obvious, but it's a lesson I've had to learn a few times, and I hope (maybe unrealistically) that I'll never have to learn it again.

These are some links I find helpful.

The Pervocracy--"Why does she stay with that jerk?"

Myths About Abusers

Off the Rails by Abbey Wilson--particularly the "Why I Don't Believe in God" series--one, two, three, four, five. Additional warning, this is about being in a cult as well as an abusive relationship. It's very different from my experience but for whatever reason, it was the first thing I read that I related to.

Trigger Warning: Breakfast

I like the writing of Lundy Bancroft (like this for example, and that whole tumblr has a lot of good stuff), but the big warning is that he basically doesn't believe women can abuse men. This is ridiculous and makes me uncomfortable.

Also, if you are in my situation, there might come a point when you should take a break from reading and writing about abuse, even if you think it's a good thing to do. It can upset you and make you paranoid; at least, it can for me. When that happens I make an effort to focus on other subjects for a while.

22 August, 2014

A fun experiment!

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

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

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

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

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

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

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.