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.

19 May, 2014

Disabilarchy?

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

Mushballing

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

02 February, 2014

///

I've been writing about the idea that you can't forgive someone until they're sorry.  Obviously, this isn't a rule, it's just something that can be really hard to do and, I think, damaging to require.  I was reading some comments on a post about a parent who tried to murder her disabled child; obviously there were endless calls for compassion, and the commenters who wanted to focus on the crime were being told that they should focus on compassion for the criminal instead.  To me it's a similar thing.

The focus on dealing with any kind of abuse or violence cannot be that we should be nicer to the people who commit it.  It just can't be.

That doesn't mean that murderers, rapists, etc. aren't human, or that their behavior may not have partially come from something bad happening to them, or that maybe if someone had been a little nicer to them or made things easier they wouldn't have committed the crime.  Those things might be true in some cases but it's not an appropriate thing to focus on and in some contexts, it's downright terrifying.

It's terrifying because it implies that non-perpetrators should be walking on eggshells in dealing with perpetrators.

Maybe if people provided more help or compassion to this parent, the parent would not have committed a murder.  (There's also the fact, rarely said but undeniable, that if the victim hadn't needed so much help we wouldn't be having this conversation.)

Maybe if people dressed differently, drank less, or expressed themselves more clearly, someone would not have sexually assaulted them.

Maybe if people were more nice/open/compassionate to someone, that person would not have behaved abusively.

No.  Wrong.  This frames things so what happened is the fault of either the victim, or people who were not involved, instead of the person who actually perpetrated what happened.  People do a lot of bad things to each other and the way to address that is not to focus on how other people should be nicer or more understanding to people who do bad things.

For one thing, if the perpetrator is not sorry and plans to keep doing similar things, then being compassionate just makes it easy for them to keep on doing those things.  For another, if there's a big focus on how victims or other people should have behaved differently, then the perpetrator can use those things to get away with their behavior or even to control their victims.

I'm not against being kind or compassionate to people, even people who have committed violence or abuse, but there's a difference between personally feeling compassionate, and trying to tell other people that they're wrong if they're not compassionate for people who have done bad things.  They are not required to be.

25 January, 2014

Not Boundaries

I have been thinking about boundaries a lot and have a bunch of posts stewing.  Some of my posts are about having strong boundaries, but today I was thinking about what is not a boundary.  I guess I should stop using the word boundaries so much because it's kind of vague--I would define boundaries as things that a person has the right to control.

For example, a person should be able to control whether they have conversations with strangers.  If I try to talk to a stranger on the bus and she keeps ignoring me or she tells me she doesn't want to talk to me, then I should stop talking to her.  If I keep trying to talk to her, I'm coming up on violating her boundaries.  If I actually become aggressive or try to punish her for not talking to me, then my behavior is seriously wrong and abusive.

But not every preference is a boundary.  Let's say the same stranger not only doesn't want to have conversations on the bus, but doesn't want anyone to have a conversation on the bus.  She tells everyone on the bus to stop talking to each other.  That's not appropriate, I don't think.

There's some room for interpretation of what is or isn't a boundary.  What if people on the bus are having a very loud conversation that is hateful or sexually explicit?  A lot of people would feel it's within their rights to tell them to stop having that conversation in public.  Even though there are some gray areas, I think there's usually an answer to the question, "Is this a legitimate boundary?"

Yesterday I was at a restaurant with two friends.  I'm not in a really high-quality fake name headspace, let's call them Alice and Sebastian.  After I mentioned how anxious and stressed out I sometimes felt when people would sing loudly in public, the conversation eventually led to Alice and Sebastian both singing loudly in the restaurant.  I felt uncomfortable and wished they would stop.

I don't know what's up with this, because I'm sure I'm totally loud and weird in public sometimes.  But I often get really distressed when I'm with someone who is singing loudly, talking in a certain way (like putting on a fake accent), laughing loudly, or just talking really loudly in public.  I guess part of me feels scared that people will be upset with them and something bad will happen to them, or that I'll get in trouble for allowing this to happen.

Because these situations make me so uncomfortable, there have been many times when I demanded that someone stop singing in public and felt like the person was hurting me when they didn't stop.  Even last night, I thought of putting my money down on the table and saying, "Okay Alice and Sebastian, you're upsetting me and I'm going to leave."  I briefly felt like doing this would just be asserting my boundaries, even though I knew it would upset them too.

When I thought about it, though, I remembered what I've been thinking about lately--that just because you don't like something doesn't mean it's wrong for someone to do it.  There's nothing wrong with being irrationally bothered by stuff, but there is something wrong with expecting other people to always stop things that bother you.  There has to be some kind of limit when it comes to accommodation.

I know that sounds harsh, but things can go really wrong if you don't prioritize logic over emotional reactions.  Like, if someone gets suicidal every time someone criticizes her--that sucks for her and it's not her fault, but if people always prioritize that person's feelings, then that means they can't even tell her if she did something really bad to them.  She could be driving the wrong way on the highway and the other person in the car would be worrying about making her suicidal by telling her they're about to get in an accident.

I've been in situations pretty close to this, and it just is no good.  Sure, people can't help having mental health problems or reacting to stuff a certain way.  That doesn't mean that they should allow those problems to control other people's lives.  I've had really positive and really negative relationships with other mentally ill people, and the most negative things have happened when people have not been mindful and responsible about their mental illness.

I just waited it out with Alice and Sebastian--I was glad that I didn't end up being mean to them for singing, because they should sing if they want.  But I also felt dissatisfied with how things had gone, because I had to sit through something that upset me.  I thought about it more today and came up with a potential solution of leaving for a while, explaining why I'm leaving, but also being very clear that I don't think they're doing anything wrong and I'm glad they're doing something they like.  Obviously this is something that some people would think is just crazy and ridiculous, but I think it could work with a lot of the people I spend time with.

01 January, 2014

Confusion and forgiveness

Content warning for gaslighting type stuff, I guess.

In November I made a few posts about how I have to be harsh with people sometimes because I have boundary issues and might take on their feelings by accident.  I'm not sure I do have boundary issues.  What happened is, at the beginning of November I ended my first serious romantic relationship.  Over the course of the relationship I had started to feel very confused about things like who I was, what I felt, and how I behaved.  I felt like I couldn't clearly remember incidents that had happened between my girlfriend and me and I was constantly straining to understand what was going on.

There was a possible explanation for this, but I didn't want it to be true.  My girlfriend refused to ever apologize or acknowledge doing things that hurt me.  If I brought up something I thought was a problem she would either claim she didn't understand, tell me I was confused about what was happening, tell me I was contradicting myself, or bring up something bad I'd supposedly done to her.  Along with whatever her response was, she also would get upset and it was awful because I knew it was my fault for criticizing her behavior.

This was all really disorienting.  When something hurt me, I had to either put up with it or risk something worse happening if I talked about it to her.  I worked hard to convince myself that she wasn't doing anything wrong.  I also worked hard to believe that the things she said made sense even when she was attributing feelings to me that I didn't have or distorting things that had happened.  Over time she caused more and more problems for me, but I had to believe it was my fault because otherwise, I would have to admit that my image of my girlfriend as a kind, well-meaning person was completely wrong.  It was past the point where she could just be doing all this by accident.  There was a long-term pattern of her distracting, punishing, and confusing me out of asking to be treated fairly in our relationship.

I don't think she set out to do this to me--I think she was desperate for closeness and terrified of criticism.  But it was still very wrong and shouldn't have happened.

When I ended our relationship, I knew that I had to turn off the parts of me that had focused so much on trying to keep my ex from being upset.  I had to stop trying to always see her point of view.  Instead, I needed to focus on the fact that what she did to me was wrong.

I might be more likely to identify with other people than the average person, but the degree to which I was identifying with my ex's feelings by the end of our relationship didn't come naturally.  I had to be trained into putting her comfort ahead of my needs.  I may be suggestible, but I didn't start out as suggestible as I was by the end.

So, yeah.  It's not me, it's you.

I also wanted to write about forgiveness a little bit.  I usually lean toward forgiving people but I think it's important to acknowledge that in some situations, certain kinds of forgiveness aren't possible.

Let's say Molly's boyfriend, Steve, steals money from her and she forgives him.  There are a bunch of different ways this could play out:

He steals money from her and then apologizes.  She forgives him.

He steals money from her and apologizes.  She forgives him.  He continues to steal money from her and apologize.  She forgives him every time.

He steals money from her and when she confronts him, he gets mad at her and says she should care more about his problems.  She apologizes and gives him as much money as he wants.

He steals money from her and she is going to confront him.  Then at church one day, Molly resolves to be a more forgiving person and decides she will be okay with Steve stealing money from her and she won't confront him about it.

He regularly steals money from her and she can't stop him from doing it and she resents this.  She decides to forgive him and not resent him for stealing her money anymore.

Molly says Steve is not allowed in her house.  She isn't angry at him for what he has done, but she's not willing to deal with him stealing her money.

So, what most of these situations have in common is that Steve doesn't see his bad behavior as wrong and he plans to continue doing it.  I'm not sure that you can really forgive someone like this unless you are doing it from a distance.  I feel like trying to be forgiving, compassionate, etc. to someone who is repeatedly hurting you is less about forgiveness and more about accepting that you're getting hurt and trying to have a good attitude about it.  I'm not criticizing people who try to have a good attitude about getting hurt but I don't think anyone needs to try to forgive someone who is hurting them.

I think forgiving someone who is sorry can be a really positive thing.  I don't think forgiving someone who isn't sorry is really something that needs to be done.  For real forgiveness to happen, the boundaries have to be in place--it has to be acknowledged that there's something to forgive.

Away From Home

warnings: abuse, suicide, supercrippery

What is a supercrip?

I use the word supercrip a lot (though not as much as I used to) and it has a very specific meaning for me.  For some people, the word supercrip just means a disabled person who is successful or heroic, but usually it has negative implications.  Often the term refers to a media stereotype of a disabled person who “overcomes their disability,” especially by playing sports, and becomes an inspiring example for kids who don’t want to do their homework.

For me, supercrippery isn’t about how other people see me, but how I see and treat myself.  My definition of supercrippery has to do with putting a non-disabled picture of success ahead of your own safety and happiness, including placing yourself in physical and mental danger so that you can resemble this picture as much as possible.  For example, if you do things slower than average, you might decide to deprive yourself of sleep so you can be as productive as a non-disabled person.  Obviously, making this decision requires you to have a lot of self-hatred and to feel that you don’t deserve to have your basic physical needs met because you are impaired.

I’m doing well now but when I am having more mental health problems supercrippery is a huge part of my life.  This post actually isn’t really about supercrippery but I want to explain what it is and tell people that if these ideas are triggering for you or make you really upset, you might not want to read the post.  The post is actually going to be about comparing disabled young adults’ life trajectories to each other, but I feel like this kind of ties in to supercrippery because it is usually comparing people to each other based on how well they fit a non-disabled standard of young adulthood.

Bella and Sandra

You know I love my fake names, so let’s have two disabled girls who go to the same high school.  No one’s disability is exactly the same as someone else’s, but Bella and Sandra have many obvious things in common (I choose these particular traits because they make Bella and Sandra easy characters to write):

  1. They both are diagnosed on the autism spectrum
  2. At some point they both receive treatment for self-injury, anxiety, and depression
  3. Adults who meet them always comment on how intelligent they are
  4. but they get Cs and Bs in school, to everyone’s consternation

That was in high school.  Over the next 7 years, this is what happens:

Sandra goes away to the best college she can get into, graduates in four years, and starts a career.  (Let’s say she becomes a teacher and is working towards a goal of becoming a school administrator.)  She lives a few states away from her family.

Bella goes away to the best college she can get into.  In her first year, she takes a medical leave because of mental health problems, comes home to her parents, and never returns to that school.  Six months after that, she starts occasionally taking classes at the community college.  She completes a few classes but hasn’t earned a degree.  She gets a job at the grocery store and at age 25, she is working at the grocery store and has no plans to move out of her parents’ house.

Most people who look at this situation will either make a judgment about disability, or about people’s moral qualities.

Judgment about disability: Sandra is more “high functioning” than Bella because she lives away from her parents, has a college degree, and has what’s considered a better job.  Bella’s disability is more severe.

Moral judgment: Sandra is hardworking, brave, motivated, etc. and “overcame her disability” by putting in effort and really caring about living independently and having a job.  Bella is unmotivated, directionless, lazy, scared of the world and of growing up, and is “using her diagnosis as an excuse.”

Moral judgment of their parents: Sandra has “tiger parents” who pushed her to succeed and didn’t let her use her disability as an excuse.  Bella’s parents failed her.  They babied and coddled her and now she doesn’t have the skills she needs to be an adult.

Actually, when I say “most people,” maybe I should say “me”--I’ve always compared myself to other young adults with similar disabilities, and I’ve always agonized over what makes one person more conventionally successful than me, and another person less conventionally successful.  If they drop out of college and I don’t, is their disability more severe than mine or am I more dedicated than they are?  If they work 80-hour weeks and I don’t, what’s wrong with me?  Why can’t I be like that?

A few days ago, I realized why.

Seven Possible Reasons They Turned Out Differently

1. Sandra’s family is abusive.

Let’s say that in their first year of college, Sandra and Bella were both really stressed out, this triggered a depressive episode in both of them, and they both attempted suicide but were stopped by a friend.

Bella decided that she wasn’t ready to be a full-time student and live without the supports her parents gave her (meals, reminders about when to do chores and how to take care of her hygiene, help with scheduling doctors’ appointments, and emotional support).  She decided to go home, focus on managing her depression, and try to identify and avoid situations where she might become suicidal again.

Sandra’s friend encouraged her to take a medical leave, but he didn’t understand.  She was extremely grateful to be at college because for most of the year, her family couldn’t hurt her; and because she was talking to them less, some of the things they had taught her started to unravel.  She realized that the things they had done were really bad and weren’t things she had brought on herself.  If she could live away from her family, she realized, she could fill her life with people who didn’t hurt her.

Sandra felt like if she went home she would get more suicidal, not less.  She also felt like being away from her family was worth the risk of dying.  So Sandra made her friend promise not to tell what happened, and she did the best she could to hide her depression so she did not get suspended from school for bad grades or being “a danger to herself.”

If it’s really dangerous or painful for someone to be at home, then that is a big factor in how determined they will be to live away from home.  For example, if someone regularly forgets to eat and is in danger of starving if she lives on her own, it’s safer for her to live with her parents--unless one of her parents has tried to kill her.  Then she doesn’t have any safe options.

2. Bella’s parents have more money.

Bella gets along well with her parents, but she doesn’t particularly like her hometown and dreams of living somewhere else.  She also wants to be a vet tech and she is taking classes, but school is really hard for her.  If she takes a full load of classes, it occupies so much of her energy that she isn’t able to spend time with friends, sleep and eat properly, and play music--things that are really important to her happiness and emotional stability.  Instead, Bella is taking one or two classes a semester because that’s a better speed for her.

Sandra also gets along well with her parents, and also is not able to be very healthy or have a social life if she is a full-time student.  But her parents struggled to support the family when she was in high school, and they can’t afford to keep supporting Sandra.  She goes to a college that offered her a scholarship, and works in the summer to help pay for expenses the scholarship doesn’t cover.

Sandra feels like she works all day at college, struggling to keep up with her non-disabled classmates.  She’s also really lonely; she has to say no most of the time when people ask her to hang out.  She usually eats Doritos and coffee for dinner while studying in the library, and when she sees groups of friends walking to the dining hall together, Sandra feels like her life is empty.  But she has to be able to do this--for one thing, her scholarship won’t pay for more than four years of school.

3. Their hometown is mostly white and Sandra is black.

At best, Sandra feels like an outsider because her family is one of the only black families in their town and she’s barely had any black friends.  At worst, white people have threatened her.  One reason college is exciting is because there are more people of color; she makes friends who share her experiences, she gets involved in anti-racist organizing, and she feels more accepted and safer than she did in her hometown.  Even when she’s having mental health problems, she doesn’t want to go home and feel the way she felt there.

Sandra also really wants to be able to support herself financially and live independently so that after college, she can choose to live somewhere where she doesn’t feel scared and isolated.  Sometimes it’s really hard for her to make it through the day, at college and after college when she’s working as a teacher.  But it’s worth it.

Bella is white and does not have this concern.

4. Sandra falls in love.

In her first semester of college, Sandra starts dating a guy named Ed.  She continues dating him for the first year of college.  In her second year, Sandra becomes extremely depressed, and Ed ends up in the role of her emotional support person.

Sandra really doesn’t want to go home to deal with her mental health problems, because right now, Ed is the only thing that makes her at all happy.  Ed loves Sandra but he isn’t super comfortable with being the only thing that makes her happy.  He encourages her to at least try to deal with her depression even if she isn’t going to take a medical leave, and he helps her go to therapists, try medication, and do other things to improve her mental health.

When they’re juniors, Sandra and Ed start living together off-campus.  Sandra has problems with multi-step tasks like cooking food and cleaning; and she also has dyspraxia which makes it hard for her to do some household chores.  Ed understands this, so he always does the chores that Sandra can’t do.  They work together to make charts and other reminders to help Sandra with multi-step tasks.

After college, Sandra and Ed get married.  They move to the city that Ed is from, where his parents live.  Ed’s parents love Sandra and treat her like their own daughter.  They’re both teachers and Sandra often asks them for advice when she is having problems at work.  Sandra tells them she is overwhelmed by the idea of finding a GP, dentist, eye doctor, etc. in the city, and Sandra’s mom finds them for her and even reminds her to make regular appointments.

Bella would like to move away from her parents--they’re nice, but they annoy her sometimes and she really wants to live somewhere that isn’t so hot in the summer.  But how can she possibly do that when she can’t even make a bed by herself and often gets confused when trying to cook basic meals?  What if she moved far away and her job was too hard and she didn’t know anyone and didn’t have anyone to talk to?  What if she was too stressed out and confused to ever find a doctor or remember to make appointments, and she got really sick and didn’t even know about it until it was too late?

She wants to do it, but she just can’t.

5. Bella is really happy living with her dad.

Sandra likes her parents just fine.

Bella and her dad are extremely close; they have long conversations about absolutely every subject, and they share a lot of the same interests and values.  She even thinks he might be Autistic too.  Bella’s mom left when Bella was three, so she and her dad have had 15 years to learn to function as a unit.  As Bella got older, her dad encouraged her to help out around the house and things gradually developed so that they both were taking care of housework fairly equally, each doing the things they were best at.

It was really important to Bella to do well in college.  Everyone said she was super smart and she wanted to defy the negative expectations people had of her because she was Autistic.  But when she went to college, it was really hard for her to live in a dorm instead of living the way she was used to, and the workload was too much for her.  She started having panic attacks and shutting herself off from her new friends, and when she started to fantasize about killing herself, she knew she had bitten off more than she could chew.  She needed to go home and be in her regular house and spend time with her dad, who she could talk to about what had happened and figure out when she would be ready to go back to college.

But after going home and after a long time of trying to be ready, Bella realized that she wasn’t ready and didn’t want to be.  She loved her town.  She still had some good friends who lived there--and her best friend was her dad.  She didn’t want to move away from her best friend just because adults weren’t supposed to live with their parents.  She and her dad got along well and were a good household.  Now that she had decided what she wanted, Bella tried to think about what, if any, plans she should make for the future.

Bella has decided that she wants to work part-time at the grocery store; it gives her days a good structure and she meets new people.  She also is taking classes so that she can have a higher-paying job in the future, but she isn’t pushing herself that hard because there’s no immediate need.  But if her dad becomes sick or disabled when he’s older, Bella wants him to be able to keep living in their house and not have to go into a nursing home if he doesn’t want to.  He’s always supported her choices and she wants to be able to support his.

6. Sandra is a supercrip.

When Sandra was a kid, she could tell that people thought less of her because she had disabilities.  They didn’t expect her to go to college and they didn’t expect her to be able to drive and they didn’t expect her to be able to live on her own, or get married, or have a high-paying job.  Sandra hated the way those people looked at her and she grew up feeling like the only way to be a worthwhile person was to accomplish all the things they thought she couldn’t do.

When Sandra is in college, she puts her academic success ahead of everything.  So what if she works slower than the other students?  She’ll just stay up all night several nights a week so she can get work done.  She doesn’t really need to eat regular meals either.  She doesn’t deserve to eat regular meals if she can’t do as well as the non-disabled students.

Sandra avoids talking to her parents because they always get really worried.  They ask her if she has any friends, if she likes the campus, if she’s taken any time off from schoolwork to just relax.  When Sandra explains that she doesn’t have time to do that because she’s not as smart as the other students, her mom asks Sandra to come home for Thanksgiving.  They’ll pay for it.  But Sandra wants to stay at school over break so she can get ahead on the reading.

Sandra’s mom says she really just wants Sandra to come home for a while so they can take care of her and she won’t have to be so tired and stressed all the time and can get some sleep.  Sandra tells her mom that she is fine and she’s 19 now which is old enough to act like an adult.  If I’m 19 and can’t be an adult, I don’t deserve to be alive, she thinks to herself.  This is Sandra’s mantra.

Sometimes Sandra thinks about killing herself a lot.  She’ll wake up feeling like it is going to happen that day.  But she would never tell anyone about this, because they would force her to take a medical leave.  Sandra would rather die than not graduate college in four years.  So she might as well keep going whether she dies or not.

Bella doesn’t have this attitude; she feels like she deserves to sleep and eat regularly, and she would definitely rather take a medical leave than die.

7. Sandra is extremely beautiful and charismatic.

This gives her an advantage because a lot of people really want to spend time with her and do things for her.

Bella is an average girl with average charisma and can’t “overcome her disability” because she doesn’t receive all the support that Sandra does.

And so on.

Golly Sandra, you’ve grown up really crazy

When I was in a Sandra #6 situation, I would get super angry at disabled people who took leaves from school.  Like, I would hear about someone I didn’t even know taking a medical leave because they had a panic attack and I would be like, “Fuck him!  I almost killed myself this morning and I still went to class even though I was crying too hard to see the Powerpoint.”  I would start being mad at the person for doing something that I thought was weak and immoral.  Didn’t they know that they should try to do things as well as everyone else?

Obviously being mad at people for taking a medical leave isn’t a sign of a really well-organized mind, but I don’t think I realized until recently how disorganized that anger was.  The reason I was fixated on these people wasn’t because they were doing something bad, but because they were doing something good.  They were caring about themselves.  Even if they prioritized a non-disabled version of success a whole lot, there was a certain extent of suffering that they weren’t willing to go through.  They didn’t feel like they deserved to die for being disabled--or if they felt like that, at least they knew they were wrong.

I wasn’t feeling superiority, I was feeling inferiority--I was jealous of them.  They valued something more than looking “normal,” being “smart,” hitting “milestones” at the same age as non-disabled people.  Maybe they had friends at home so they wouldn’t be isolating themselves from everyone if they couldn’t stay at school.  Maybe their parents wouldn’t be disappointed in them and say they should have worked harder, been more organized, taken medicine they didn’t want to take.

I’m hesitant to write about this the way I am, because of the power dynamic.  People like Bella are judged so much.  People see it as a failure for a young adult to live at home, and for a disabled young adult, living at home can seem like the fulfillment of lifelong low expectations.  But in every scenario I wrote, Bella is making really good decisions.  She may not be a success if the goal is to imitate a non-disabled person, but she is prioritizing her happiness and safety and she has goals that she can accomplish without ruining her life (and imitating a non-disabled person will make your life empty even if it doesn’t kill you).

In the supercrip scenario, Sandra isn’t making a ton of sense, but in a lot of the scenarios she is making good decisions too.  In some of the scenarios she isn’t receiving adequate support to make it through college or live on her own, but going without support is the lesser of two evils.  In other scenarios, like the one where she falls in love with Ed, Sandra is really lucky and support falls into her lap, so she loses nothing by living away from her parents.

In most of the scenarios, Bella is able to live with her parents because she has an advantage that Sandra doesn’t have--she is white, she has more money, her parents aren’t abusive, she doesn’t hate herself, etc.  In other scenarios, Sandra is able to live away from her parents because she has advantages that Bella doesn't have.  If Sandra and Bella are still friends at age 25, maybe Sandra is jealous of Bella because she feels like Bella had more choices.  But Bella is probably pretty jealous too because society judges people like her and wants her to feel worthless.  She also doesn’t have the freedom that Sandra has.

Depending on the scenario, one of them can often be considered better off than the other, but only a few of the Bellas and Sandras are really happy with their lives.  This is because, bar extraordinary luck, a lot of people with disabilities like Bella and Sandra are not considered to be entitled to support in living.  They have to choose between living in bad physical and emotional condition so they can be free (and seen as a success), or living with parents, or getting in a relationship with someone who is willing to help them, or just ragequitting the whole thing.

The choice they make is determined by a whole lot of factors, and two people with exactly the same abilities can make totally different choices without either of them making a bad choice.

(I wrote this post in July and didn't end up posting it because I wanted to nitpick it but I ended up not doing that.  My friend had said that in my posts, I presented all the Bellas as really smart for choosing to stay home.  I know there's plenty of bad reasons to drop out of college but I don't really feel the need to enumerate them because dropping out is so stigmatized and everyone assumes it's being done for a bad reason, while disabled people who graduate college are idealized.)