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.

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.)

when loving your enemies is hating yourself

Some more about the stuff the other day.

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

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

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

Lia is pretty stellar.

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

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

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

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

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

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

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

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

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

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

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

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

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

The Suicide Suck

(If reading this post makes you think you need to be worried about me, please read it again. I am just being honest about a possibility that exists for a lot of people.)

Death can feel like gravity. It can feel like you're killing time, but not waiting for anything. I've been going a long time without the Suicide Suck and it's a really nice feeling.

Maybe it's easier to blame something. Maybe it's easier to blame myself. The truth is I guess both things. I have a tender belly. I guess it's possible I got this way from too frequent wounding when I was a kid, that instead of toughening up I ended up constantly hanging on strings, but I might just have been born tender. The social justice movement to help me would just involve encouraging people to protect the tender-bellied among them. There's no obvious injustice that has caused every Suicide Suck of my life, but that doesn't mean that each one isn't a response to my environment.

It's weird because even though it appears for specific reasons, the reasons are different every time. The Suck is actually faceless, but it always looks like something. It's only lately that I realized there was only one lion, or rather, anti-lion.

Oh Suicide Suck. Maybe you will be the death of me, and it's weird to be thinking this in a completely Suck-free zone, at least a month's insulation between now and the last time I was in one. I feel so good. I mean plenty of the time I feel tired or angry, but normal-style, not the Suck, which is this kind of raging tearfulness bubbling up behind my eyes and advising me how to get rid of it.

But it will be back and I guess one time might be the last time and that's not so bad. We all have to go somehow and if my way is that way it doesn't negate everything that came before. After all fighting to live is a different kind of fight, because you only have to lose once. Adults who commit suicide have often spent years refusing to do so. It makes me mad that successful people who kill themselves end up being defined by killing themselves instead of the fact that they were able to become successful while wanting to kill themselves. If I ever get Sucked I want people to know that I had a chronic illness that was part of my personality but that the last minute of my life wasn't who I am.

Annie

(The story in this post might be upsetting to some people because it involves trying to pressure someone into taking medication and judging them for not taking it.)

I feel like I shouldn't be posting right now because I should be sleeping and I'll be tired on the way to work, but I feel like I use the excuse of sleeping to avoid almost everything, like church, and I barely sleep anyway so here I go.

"They say an unhappy man wants distractions--something to take him out of himself. Only as a dog-tired man wants an extra blanket on a cold night; he'd rather lie there shivering than get up and find one."--CS Lewis, A Grief Observed

When we were freshmen Clayton and I had a friend, let's call her Annie. I don't know how much of this is 100% accurate but I don't think Annie reads this blog, so it's probably all right to just tell you how I remember it. Annie identified herself in conversations as someone who had a mental illness and sometimes hurt herself, and one day she casually told me that she probably should be on medication because she was at an age when the way her brain was was being solidified and if she didn't go on medication right now, she would always have problems. She told me this like it was funny and she didn't particularly care to do anything about it.

Clayton and I both have savior complexes and we made it a project to try and get Annie to go to student counseling. Never mind that he would later realize how fucked up he had gotten from the medication student counseling put him on, or that I've been virulently anti-medication of any kind since I was 16, to the extent that I would rather throw up from pain than take an Advil. For whatever reason we decided that we were right and Annie was wrong and we had to get her to go to counseling.

It was almost summer; Annie wanted to be outside when it was sunny so she could skateboard and hang out with her friends. Every day the two of us would descend on her and try to get her to go to counseling and she would say that she didn't want to go until it was dark. Student counseling closed at five in the evening so this was the same as saying she could never go. I remember how ridiculous and reckless Clayton and I thought she was, and how much we annoyed her.

Annie and I grew apart over the next three years but she is someone I admire a lot because she's so smart and interested in so many things. Sometimes it seems like she just has to think of something she'd like, and all the resources appear to make it happen. I found her hard to be friends with because she moved so fast--she would suggest doing something, I'd resist it because it went against my schedule, and by the time I started realizing I would like to do it she would already have left to begin it.

The point is though that a year or two ago I started really understanding how I could see Annie's decision as smart, not stupid. It got me through the last year and a half of college, trying to think that way--blinding myself to the big picture, trying to unfocus my eyes and look at seconds and colors. I couldn't do things right and I couldn't feel good a lot of the time so I stopped trying. I didn't fail. When I saw something in front of me that might make me feel good, I took it.

So for a long time I've been on that kind of track and I've realized how hard it is for someone outside to see why you don't listen to "reason." Why you'd rather ride in a car than worry about your problems taking care of yourself. Why you'd rather have fun smoking than figure out if you will let yourself live long enough to die of lung cancer. Why instead of constantly apologizing to yourself and everyone for not being more organized, you're making Kraft Macaroni and Cheese in a huge pot and watching YouTube videos with your roommate.

The thing I feel most clearly now is that it was none of my business what Annie did with her time. I'm not as clear on the rest of it--how being like Annie applies to me and how I should feel about it.

I found myself talking about Annie today. I was trying to argue why it's okay for me to be involved with men even though I am gay. I'm probably going to get upset writing about this because the conversation turned to an end that felt more permanent than usual. I know I was convincing him at the beginning. At some point it wasn't working anymore for me to say "we should live in the moment" and "I don't expect to ever have a family or a relationship with a woman, so we might as well try and feel as good as we can."

And I remembered, a few years ago I would have thought being with a guy was like throwing something in God's face, being too lazy and desperate for comfort to feel anything but the shadows of what I could feel. I would have thought it was the real thing or nothing, and even now it's hurting me to type that it's not the real thing, because I want it to be as good as the real thing when it's with a guy, but it's not and that's not my fault. And the boy wasn't hurt, he's the strangest, nicest boy--he was relieved.

The truth is it's very hard for me to work especially not being a driver, and it's really hard for me to live on my own, and the only people I talk to outside of work are men who try and bother me. Giving up smoking is a serious sacrifice not because of nicotine as much as the fact that I lose a reason people will talk to me. I'm really sad right now. Sorry if this is too much information, but I've been going back and forth on the Annie thing for such a long time, and I wanted to write about it. Not Annie herself because obviously she shouldn't have been on meds when she didn't want to be, but thinking about endgames vs. staying in the sunlight whenever I can.

The thing is I don't know if I ever felt so much this way since I was on meds myself in tenth grade. Every day I'd take stimulants and spend a few hours thinking everything was really special and important, not realizing how much I didn't notice or how fucked up everything had gotten. As the day went on I got sadder and sadder and the only thing that mattered to me was--guess what--the person I was dating, who I wasn't actually attracted to.

Towards the end of the drugs, in some sobbing state, I told my mom I wasn't happy. My mom saw me all amped and buzzed up on the way to school every morning after I downed my Wellbutrin and Adderall. She said, "But I see you happy every day."

I said, "but I'm not a happy person."

I built myself back up through the two depressing but somehow joyful last years of high school. I was a very sad but happy person by the time I turned eighteen. I'm not sure how lazy and distracted I must have gotten, to get so far off track--because yeah I have to look at the small things, but this has gotten small enough to seep into all of them.

I'm not a happy person.

And this is me telling God and myself that I'm going to get better.

surprise sanity!

I've written about this before a bit. but does it make anyone else really sad when you're reading a book or watching a movie, and a character who originally seems really stereotypically disabled (this especially happens with mentally ill characters) starts to get more complex and less stereotypical and turn into a cool character, and then it's like, surprise...they actually weren't really disabled. or they weren't, like, organically disabled, if it's a mental thing. they acted like that because of something wrong that someone else did to them and/or because society is messed up.

I'm leery of saying this because it kind of sounds like I'm saying PTSD and other stuff that comes from trauma isn't a real disability. I don't think that but I do think there's this weird division in fiction between people who are "really" mentally disabled (usually: depression, psychosis, autism, social anxiety, sometimes intellectual disability) and people who appear that way, but actually it's someone else's fault, making them actually at their core non-disabled.

obvious example: lisbeth salander!!

I'm not saying some of these characters are proven beyond a shadow a doubt to have entered the world non-disabled. but there is a revelation that at least some of their disability is related to trauma, and they are "sensible" at their core even if they are eccentric. and it's like, other people think that they don't know what they're talking about, and think that they don't know what really happened to them and/or what's really wrong with the state of the world, because they're disabled--but surprise, because they aren't innately disabled, they actually DO know what's going on and what they're saying is actually true.

I read a book recently that didn't exactly make clear whether it was doing this or not. it was a great book but I felt disappointed, I guess, by the one element.

early on a (now absent) character is referred to and described for the first time. she's kind of a typical mentally ill/depressed character, there's a big focus on the strange things she did and how difficult it was to live with her and take care of her. as the book goes on she is described/flashbacked to again and again, and seems more complex, human, nice, and interesting each time. in the second half of the book we learn that she was abused, and that the way her family treated her when she was depressed actually kept her from recovering at least as much as her actual depression did. when she finally appears at the end of the book, she is a heroic character.

I thought this was really cool, but I guess I felt a little sad too, because I knew that most people would perceive the book in the ordinary model of mental illness--i.e. this apparently mentally ill character turned out to be a smart and heroic person who was wronged by other people, therefore she wasn't REALLY mentally ill, it was just because of her family, and by defeating them, she can stop being ill. the book doesn't really assert this but it also doesn't assert the opposite--that she would have had mental health problems anyway and they were exacerbated and used as an excuse by her family. it just doesn't really say.

so I've read lots of reviews of the book that are like, "IT TURNS OUT THAT HER 'MENTAL ILLNESS' WAS ACTUALLY BECAUSE OF HER FAMILY!" wah wah. this may seem nitpicky of me, especially because the author may not even have meant for people to have that reaction--but I just find it disappointing because it would be cool to see an inarguably mentally ill character who's also smart and a hero. also a portrayal of interaction between mental illness and life experience, instead of the idea that you can only have one or the other.

trigger warnings!

responding to a comment on this post

I'm sorry if I'm being defensive. This is a really long comment, I know it sounds really douchey at the beginning but bear with me if you can.

I haven't ever used trigger warnings on this blog, not because I have a problem with them (I use them sometimes on tumblr), but I guess because a blog is more like a home and it would feel like redecorating. I write about ableism and abuse, I write about stuff that makes me upset (I go back and forth on using the word "trigger" about myself because I still feel like I don't know exactly what it means and I don't want to appropriate it), I write about really bad brains and stuff I felt and said when I was in manic, suicidal, and/or violent states which often includes hatred of other disabled people. I guess from an aesthetic point of view I wouldn't like to adopt a policy of warning for this stuff because it would feel like oversimplifying and spoiling what the post is about. I've written fiction all my life and I studied creative writing in school which probably makes me more touchy about style and composition than makes sense for what the blog actually is. But I haven't really thought about this in depth, because no one has ever said anything about my posts being triggering (at least not in a direct way that implies I should do something about it) so I figured that people who were likely to be triggered by my blog were just choosing to read other blogs.

I mean maybe people just haven't wanted to speak up and ask for trigger warnings because I might react really defensively! Here you are commenting for THE FIRST TIME because this is important to you and I'm like...feeling (and sounding, to myself at least) really defensive.

Possible background!

I am kind of sensitive about this particular issue because of what happened when I made my tumblr post (which did have a trigger warning) in the spring. I was obviously feeling suicidal and dissociative and was having all these violent urges about myself and other people. However, only one of the people who reblogged the post on tumblr expressed that they were worried about me. Everyone else, including people I considered friends, just reblogged it to call me out for being ableist. At one point I started self-injuring and posting about it to try to prove that I wasn't less severely affected than the hypothetical people I was mad at. The person I was talking to continued to call me out for being ableist. People I didn't even know reblogged the post from her and wrote comments about how my post was "the dumbest thing ever" and I obviously didn't understand what psych-disabled people were going through. Anyway. It was a really bad experience, and while it was bad for everyone else and not just me, I still feel resentful about it because I felt like people only wanted to point out the flaws in my argument when like...my argument was obviously super flawed because I was MANIC.

Anyway, because of all this I felt like you were calling me out and telling me I was wrong for having those feelings or even mentioning having had them...when it's just as likely that you were just telling me that my blog wasn't accessible to you and I should make it more accessible. Thoughts? (If you want.)

I would also like to hear if anyone who reads this blog finds it really triggering in a way that makes them not want to read it or makes it really stressful to read, in a way that could be avoided with trigger warnings and/or another solution.

(trigger warning for description of me having violent feelings toward myself and other disabled people)

I couldn't sleep and wandered into Clayton's room and said:

when I was 13 my dog died and I felt really sorry for my parents because now they only had me. Whenever I thought about the fact that I was an only child I was filled with this guilt I tried to avoid thinking about, that they didn't have another kid to take their minds off me.

Last spring I was almost done with college. My parents had told me that I would be able to finish college in four years if I worked hard enough. All my friends who had disabilities like mine were either having a lot of trouble in school or had already had to leave and I was determined not to be like them. I kind of hated them. I got in a big fight on the Internet because I made an angry blog post about how I wanted to kill people who took medical leaves because I would kill myself rather than do that.

I would get really angry and scared about potentially not doing schoolwork and not being able to graduate. I would get suicidal. Sometimes just trying to come down from being really suicidal made it hard to do work but I couldn't tell my professors why my work wasn't good or on time. It made me feel upset to wonder what they thought of me but if I told anyone I was suicidal I could be removed from school and I wouldn't be able to finish in four years.

My parents do a lot for me and I'm very close to them. I consider them great people but a part of me is disappeared from them.

About Bad Brains

At one point, another person diagnosed with autism asked me why I would refer to myself as "bad brains" and if this was a joke. It's not a joke at all. The most obvious explanation I can think of for calling myself bad brains is that I'm committed to being as negative about disability as I care to be. I don't necessarily feel like people who talk about their disabilities positively are just characterizing themselves that way for political reasons, but that's not the way that I'm made. Maybe it's even part of my disability that nearly everything is the end of the world, and at the same time nothing is. It would be completely out of character for me to talk positively or even neutrally about being disabled, and I don't think I should have to do that to have my opinions about anti-ableism respected.

But this motivation--reclaiming negativity about disability--actually isn't even the major appeal of a bad brains identity. One of the big things I love about the phrase bad brains is that it can be used to indicate a lot of different things, and one of those things is a flaring up. It can be really hard to get respect from other people, or even feel that you deserve respect, if you don't have a disability that looks the same every day. When you are suddenly slow (or suddenly sad, and that makes you slow), or suddenly so angry that you can't tolerate doing anything slightly difficult or stressful, there isn't really anything to call this to try to explain why you're making what seem like very silly and strange decisions in an attempt to look after yourself, or why you can't do the things you can usually do. So I like to call it bad brains, as in, "I'm having bad brains today," or, "My brains are too bad to do that right now" or, "Sorry but my brains are about to go bad."

This isn't necessarily something that everyone understands, but some people pick up on it, some people in my life have learned what it means and, most importantly, it helps me explain and justify things to myself. It used to be completely unbearable because it felt unexplainable and overwhelming when things just went different for me and became much harder or more painful. I felt lazy and weak. At least now I can think of it as kind of like having a cold.

In addition to being really catchy and practical, bad brains is my identity of choice because it is so vague. I kind of hesitate to say this because I don't want to sound like I have some problem with having autism or that I don't identify with the Autistic community--obviously at any point when people with autism are being counted I will be specific and say that's what I am--but on a practical level and I guess a loyalty level, I don't really feel that AUTISM AUTISM AUTISM is the way to describe me or anyone. I'm just feebleminded, bad in the brain, slower than molasses going backwards, batshit, a lid-flipper, too stupid to live, NOS, awesome fuck-you surprise. Walking corpse. Magikarp refuses to evolve.

Autism is a big word, and I think if I attempted to say that what I experience is the definition of autism, that wouldn't be any more acceptable than people saying autism is a social disability. A lot of the people I feel really close to were diagnosed with autism--at the same time so were some people I couldn't feel less close to--so maybe let's just say that autism is a big word that describes what some disabled people look and act like, more or less, especially when they're young. I know this seems like a really aggressive rejection of the label, but I feel so extremely not represented by what professionals say about autism, while also being similar enough to a lot of other people who were diagnosed with autism that I don't think the classification is meaningless.

When I meet Autistic people who resemble the Asperger's stereotype (this is mostly visible in how they converse), I feel a certain sense of attachment and relief. But it's not any more than I would feel if I met someone with an intellectual or psychiatric disability, or even if I met someone who wasn't diagnosed with a disability but has a lot of similar stuff going on. In fact, in some cases I can feel a stronger sense of attachment and community (in terms of what we are like, and what our disability is practically like) with a person who belongs to one of the other groups than with a person who belongs to the group that's supposedly my group. It's true that all the people I'm close to online have autism, but that isn't the case with the disabled or disabled-ish people I'm friends with in real life.

I like to say bad brains because I think it is kind of a way of being more practical by addressing exactly what is going on. My early life doesn't really matter right now, what matters is what I have to manage and what I'm experiencing day to day, which is bad brains. It also matters what I have in common with other people because if we're dealing with similar things we can help each other. That "what" is bad brains, not autism.

Bad brains is not your medical history. Bad brains is just a fact.

some models and their applications in fiction

To me there are three ways of portraying disability in fiction--medical model, social model, and fake social model, with the first and the last being the most common. Although I wouldn't say it's the best movie I've ever seen, It's Kind of a Funny Story was impressive in its attempt to tell a story within the social model. It doesn't see the main character's problems--suicidal ideation and panic attacks--as a reason to avoid making a fairly typical quirky teen comedy with montages, huge amounts of voiceover, and animated sequences. And although Craig, the protagonist, is in a psych ward with people who have more severe problems than his, he ultimately identifies as "like them." The standard romantic conflict, where a boy must choose between the girl he always thought he wanted and a new girl he really should be with, is here about normalcy vs. visible psychiatric disability. The non-disabled girl Craig thinks he wants sees his hospitalization as "edgy," but is disgusted when his anxiety causes him to throw up; the girl he should be with cuts herself on her face. Reviews of It's Kind of a Funny Story insisted on reading it as either medical model or fake social model, and effectively criticized it for having a protagonist whose disability wasn't obvious or severe enough.

What medical model means in pop culture should be obvious enough. In this dour movie, Craig displays every textbook symptom of depression and anxiety, and the montages and fantasy sequences are excised because they're not appropriate for such a serious subject. Also excised are the major subplots about the academic pressure Craig is under from his friends, school, and family, and how this conflicts with his love of drawing. This might imply that society contributes to Craig's problems, which would mean he isn't really ill, just sensitive! Real disability is obvious and, when untreated, looks the same in all situations.

Fake social model is more fun to watch--a fake social movie could definitely include montages--but it's ultimately just as unsatisfying and lacking in truth. I call it fake social model because I think it's what people are responding to when they say things like, "In this case, the social model fails." Sorry, guys. Prophecies can fail, tongues can cease--but the social model remains applicable to every case there ever has been or will be. The thing is if we say "disability isn't real," we mean objectively. Many important things are not objectively real. The fake social model takes the perspective of, "Not only is disability not objectively real, but it isn't real, full stop." Of course, this is obviously not true, which means that stories in the fake social model which have more than one disabled-identified character often portray the main characters in fake social model, and other characters in medical model. The way this would work in It's Kind of a Funny Story would be to show Craig's anxiety and depression as entirely caused by external pressure, or even imagined out of nowhere because he lives in a society that is always "labeling people." The more severely, inarguably disabled characters would function as jokes--how funny that anyone would think Craig is like them, when he's clearly like us!--and possibly by tragic example they would convince Craig that, since he's not as bad off as they are, he must be normal. The girl Craig falls for would also be fake social model, and in all likelihood would not cut her face--self-injury is serious, you know, and a character who's Not Like Us is too sad or funny to be a viable romantic interest.

Fake social model is frustrating because, of course, it always fails when applied to all disabled people. So it ends up promoting a feeling which is even more offensive than the medical model--that it is wrong for our hero to be under pressure, overmedicated, involuntarily committed, stigmatized, or whatever else he or she faces, as a result of being mistakenly identified as disabled. FWD/Forward did a whole post discussing tropes of non-mentally ill people who end up in psych wards, and came to much the same conclusion. The implication is, invariably, "this is wrong because the hero isn't really disabled." Real disabled people, those ghouls, deserve all this, but fortunately it is not Our Life.

The third option, of course, is social model. True social model can be any genre, though pure tragedy or educational film often has difficulty understanding it. Life tends not to feel like either of those things. It's probably no surprise that I began this post thinking about Skins which awestruck me with its ability to hold two ideas in its head at the same time--a)JJ is genuinely disabled, and b)the stigma he faces is a problem. This is real social model writing, which pays attention to both impairment and outside pressure, as well as the ways the two can exacerbate each other. Though aspects of It's Kind of a Funny Story are very naive, and it doesn't reject fake social model as clearly as I would like, the movie cares enough to portray a complex disability experience and should be commended.

cassie ainsworth & redemption rejection

this is just some Skins gibbering, mostly character- and not plot-based, which I think is interesting in terms of ideas of covering (or "disability redemption").



me: that was me being a bitch like oh wow but fuck you style
have I mentioned that's like my favorite line ever?
Joshua: haha, it's a good moment. I dunno Jal is being kind of patronising, and though she never deserved to be the target of evil Cassie, you can see why that would hit Cassie's angry spot!
me: like, it sort of reminds me of having to act really cute to make up for being disabled
Joshua: nice interpretation
me: that's what "oh wow but fuck you" means to me.
Joshua: and like.. even more charitable to S2 Cassie than I usually am.. which is very charitable.
me: oh I mean, I don't necessarily mean that's what she means. it's just sort of what it means to me. Like, I think she just says oh wow because she always says it, and then she gets to the actual content of what she's saying, which is fuck you. But to me like oh wow is a very important line, even though people act like it's stupid and annoying, it means something really important.
me: I remember once telling Ari that I liked working with severely disabled people because lots of the people I worked with hugged everyone they met, and for some reason I'd observed this was more common in adults than kids with similar disabilities
Joshua: like they feel they have to be like that?
me: and Ari suggested that some people are very isolated and it's like "oh wow a person! I never get to interact with a person!" He said something like, "I hope the next generation of pwds can decide that they're not particularly interested in someone or they don't like them"
I think this is interesting in terms of how Cassie is introduced in the first episode. I haven't seen it in a while, but I think she hugs tony, possibly hugs sid, and then hugs abigail--"YOU'RE SO LOVELY!!!"
the plot thickens!
then obviously throughout the season there's the constant "oh wow" and manic pixie dream girl reactions to everything--coupled with starving, suicide attempts which often seem in her cases to be engineered to hurt people or cause as much trouble as possible, and occasional moments of being pretty mean or pissed off.
me: I am sort of getting this from you because I remembered when you said that Cassie doesn't really change from s1-s2, not in a deep way.
Joshua: No she really doesn't.
me: yeah so in conclusion, the line "Oh wow, but fuck you" line means a lot to me because it's almost like Cassie sort of rejecting the things that she previously did to try to "earn" people's friendship and support.
Joshua: Cassie would not mean nearly as much to me without s2 as much as I love S1 Cassie. If she'd been left at that without the contrast of S2 she'd be a standard Manic Pixie Dream and a fairly borderline offensive idealised picture of mental illness.

Oh wow US Skins, but...fuck you!

WE LOSE. (Actually I lose every time I remember that I don't look like Hannah Murray.)

The American Skins remake is pretty bad, but the last episode was all right. If I saw it on its own I probably wouldn't think it was that bad. However, since I'm familiar with the original Skins the episode illustrated something that I think is problematic about portrayals of the less visible mind disabilities (say psychiatric disabilities, learning disabilities, and verbal autism) on TV and in movies. As I see it, it can go two ways.

1. the person has a very obvious disability, correctly diagnosed by professionals who give the person exactly the right kind of help. Very medical model--the disability is the problem. Everyone else (parents, friends, etc.) wants to help and is super helpful all the time. Usually this character appears in a Lifetime movie or is a minor/guest character.

2. the person is diagnosed with a disability and given treatment by professionals who seem kind of incompetent. It seems like parents, friends, etc. are treating the person in an overprotective or disrespectful way because of the diagnosis. Maybe the person gets put on meds that have some bad effects. Amanda gets excited--is this a three-dimensional, realistic portrayal of disability? Probably not. The person, it's implied, doesn't really have a disability at all. Their parents are just overprotective.

(I won't go into the implications of this dichotomy but I think something similar is explored in the FWD/Forward posts about TV shows, movies, and books, where people without psychiatric disabilities end up in institutions.)

This ubiquity of these two portrayals can be observed by reading recaps and discussion threads about my beloved Skins 3x07. To me, the issues in the episode are twofold: a)JJ has autism and can't handle some stuff that's going on, b)his mom, friends, and psychiatrist are all dicks. But I always see people talking about the episode this way:

"I feel so bad for JJ's mom, his condition has had a big effect on her. It's so sad that he has to take so much medication to control it. He's so lucky he has such nice friends! Emily was so nice to help JJ! It was great at the end of the episode when JJ's mom was happy because she saw how Emily was helping JJ become more normal and get better at socializing."

Or this way:

"JJ is starting to realize that he was misdiagnosed and shouldn't freak out about things because he's normal."

In Generation One, the one that's currently being remade in the US, there was a disabled main character too. Her name was Cassie and I have to make a Bad Brains Wearing Clothes post about her because she basically got me started wearing lipstick for the first time and she has perfect sunglasses and a perfect jacket and perfect hair. Cassie had anorexia and was suicidal, but she was also super cool and funny; and, as with JJ, she was surrounded by douchebags but this wasn't set up as being the reason she seemed disabled.

Cadie, the Cassie character in the American Skins remake, is probably the only character in the remake I especially like. Her episode wasn't that bad. But listen to this! She's not anorexic anymore. She's just on a bunch of medication and one of her doctors said she has OCD but it kind of seems like Cadie is faking it to get pills? And her mom is also a huge bitch who doesn't think anything Cadie does is okay, which could be how she ended up going to doctors in the first place. Basically, in the transfer from UK to US, Cassie has changed from a character who was actually disabled, but wasn't just disabled, to a character who might not be disabled at all.

reality in states; or, why I'm not going to overshare all the time anymore

(I was going to write an actual post about this, but I basically summarized the entire planned post when I was talking to my friend and I think the summary works equally well to get across what I have to say. This is slightly an announcement about the direction of this blog--or maybe it's an announcement that I'm getting back on track, after veering in some fucked-up directions--but I also just think it's an interesting problem on its own merits. I've edited the conversation to remove my friend's comments, and to avoid doing what I am, at this point, resolving not to do.)

me: well I feel like I've known a few people who like
11:07 PM 
will get in a really depressive state and they can't separate the depression from what's true
so like for example they'll basically go on a crusade against some thing or person they see as being bad
and for people outside of it it's kind of obvious, like "wow, no matter what happened, this person is not really experiencing reality"
11:09 PM 
me: well, so my blog becomes the narrative that I tell myself about my life, if I write in it a lot
me: and at periods when I'm in really bad emotional states, I often have this narrative going really loud in my head and when it's really bad the narrative becomes less and less connected to reality
11:13 PM 
now, I guess I feel that what the narrative has been lately is basically probably true in some sense
"I'm disabled, people don't read me as disabled, people don't respect disabled people, people expect things of me that I cannot do, this is bad, etc."
and it's okay for me to write about this obviously
but the problem is when I get into some sort of state
11:14 PM 
and I don't think I have a mood disorder, but I guess it's also pretty normal for a lot of people with autism that we just get into a state when something is overwhelming for whatever reason, and it just sort of takes over everything and it's not that different from a depressive or manic episode
11:15 PM 
me: and, you know, I think my states are probably who I am and would probably happen no matter what--although they're affected by my stress level and other stuff, I definitely think they've been much worse this year and much harder to transition out of. I mean, some of the things that put me into states are really not fair and I'm justifiably angry about them, but that doesn't mean that I'm in my right mind when I'm in the states.
anyway I think the problem is
I get in these states and the narration in the states is like
11:16 PM 
"everything is so hard, I'm a waste of space, my autism is like this giant pile of shit I'm carrying around, I have a horrible brain, I want to [blah blah blah self-injury blah blah], if I just [blah blah blah self-injury blah blah] everyone would believe I was really disabled and maybe someone would use what happened to make a point about ableism which would be the most useful thing I could do"
11:17 PM 
me: and on the small scale, this is so bad I'm totally worthless I'm going to [blah blah blah self-injury blah blah]
and all of this, is like
me being in a state
yes, probably the opinions behind what I'm thinking are things I would stand behind when I'm feeling all right
but the whole thing is like
not really completely attached at the hip to reality
HOWEVER
11:18 PM 
I think sometimes maybe because I want support but also because my states superficially resemble stuff that I write about when I am in my right mind
I end up writing on my blog about how I want to [blah blah blah self-injury blah blah] or something, because in the state it looks to me like it fits in with my other posts. when I'm in that state, it feels like hurting myself would be a political act.
but...making those posts is not a smart or okay thing to do.
even if I think I'm doing it to make a point or something
11:19 PM 
what I'm really doing is letting my states take over completely
and instead of just understanding it's a state it's kind of awful maybe I can distract myself or talk to someone or maybe I just need to pray or sleep it off, like I start believing in the validity of the state
even when the state is like, I need to hurt myself, my life is so sad there's nothing good in it
11:20 PM 
um...so yeah I'm not going to write about this kind of stuff on my blog anymore. and I want to write a post basically covering this because I think it's interesting and may be helpful to other people who have states
although I do understand the irony of writing a post about this when I just said I wasn't going to post these really intense emotional things.

I basically have an abusive relationship with the DSM

where it keeps building my hopes up and then, you know, dangling me off of a skyscraper, but never mind.

[note 4/30/11: it's been pointed out on tumblr how incredibly shitty the title/subtitle of this post is. For me to use a stereotype of an abusive relationship to try to make a joke about the DSM is basically to imply that no one who is or was in a REAL abusive relationship, and would not see their life as a joke, is likely to be reading this blog. I'm really sorry.]

Thanks to Sarah posting about it, I realized that a lot of revisions on the DSM-5 website have been updated. This is the ASD page.

I have some trouble with the diagnostic criteria because it's so obsessed with social impairment, and I just really worry that there will be a lot of the same issues with adults getting diagnosed. The way I see things is that a lot of people with autism tend to have a similar kind of history of being socially isolated from childhood to young adulthood, especially at 10-15.* And this is definitely an experience that affects people in a lot of ways and is important and can probably be used pretty effectively to diagnose teenagers and kids. But in my opinion it's not a good idea to say "this is autism" unless you're writing a diagnostic criteria only intended to diagnose very young people.

It's really frustrating that the DSM has again produced a criteria for autism that actually scares me when I read it, because I have to start thinking, "okay, if I need a recent diagnosis ever...where am I going to find someone who can actually do this, who actually knows enough people with autism to have a feel for what it actually is, instead of just going down the list like, 'okay, you can do a normal back and forth conversation, you don't have autism'" (seriously, you just have to miss one social symptom and you're out).

I believe in autism. What a weird thing to say, like it's some kind of ideal--what I mean, though, is that when you look at all these people who have ASD diagnoses, there are a lot of shared experiences and perceptions and impairments. Yes, the diagnosis, and the medical conception, is fucking ridiculous, as evidenced by the fact that so many people who were diagnosed as kids wouldn't be able to be diagnosed as adults, indicating that what was written down as The Disability was just kind of a fairly superficial piece of it--so what professionals mean when they say "autism," I guess I don't think that is real. But I do believe that I am a particular kind of disabled person because I've felt and seen that.

It's just really hard, because I frequently feel like the only people I can trust are other people with autism. I guess a lot of disabled people feel this way, but it's just scary to think about how much professionals don't have our back.

Speaking of being scared, I am, a lot. In fact, I perfectly fit the DSM criteria for Generalized Anxiety Disorder, except for the fact that people with ASD can't be diagnosed with GAD. I looked up the proposed GAD revisions to see if this has been changed, but it's still the same. For a minute I thought that GAD in someone with autism could be diagnosed as Anxiety Disorder Due to a General Medical Condition, but I'm pretty sure this is only applicable to physical illnesses.

This requirement has always baffled me, since, even though a lot of people with ASD do have all the symptoms of GAD, these symptoms aren't actually part of the ASD diagnosis. So my understanding is that if someone with ASD who has all the symptoms of GAD needed accommodations or services due to their anxiety, they would not have a diagnosis that supported those accommodations or services because anxiety is not mentioned in the ASD criteria; and they also wouldn't be able to go get a diagnosis of GAD, since these symptoms are supposed to be somehow covered by ASD.** Even though they're actually not.

So it's like, apparently anxiety is recognized as related enough to ASD that it can't be considered a separate disability, but it's not related enough to actually officially include in the ASD diagnosis? Wow thanks for completely fucking us every which way! That's baller.

If someone tells me I'm misunderstanding how this works--what it means for diagnoses to exclude other diagnoses--I'd be so into that. It's the kind of thing about which I end up feeling sort of sad and sick because it can be so damaging to people in real life. But if I'm right, I'd like to tell you about some other stuff that both isn't in the diagnostic criteria for ASD and isn't allowed to be diagnosed as a separate disorder in someone who's already diagnosed with ASD.

Disorganized speech, if coupled with either catatonia or what are called "negative symptoms" (flat affect, avolition, asociality), is enough for a person to be diagnosed with schizophrenia--as long as the person doesn't use drugs, doesn't have episodes of a mood disorder at the same time, and doesn't have autism. People with autism are only allowed to be schizophrenic if they also have "prominent delusions or hallucinations."

Impairing or distressing thoughts about self-injury are enough for a person to be diagnosed with Non-Suicidal Self Injury or Non-Suicidal Self Injury NOS (the NOS is for people who have done it less than five times in the past year, but regularly think about it) but neither diagnosis can be received if "the behavior [can] be accounted for by another mental or medical disorder (i.e., psychotic disorder, pervasive developmental disorder, mental retardation, Lesch-Nyhan Syndrome)." They've already ruled out the act of self-injuring as part of stimming, so that is not what they mean by saying ASD and ID can "account for" self-injury.

You also can't be diagnosed with social phobia if your symptoms of social phobia are part of the symptoms of your ASD. And no, of course they don't explain what this means. And you can't be diagnosed with hoarding if you hoard things related to your special interest? I'm actually not going to go through the whole DSM website because it's making me depressed. Maybe I'm in a depressed mood, but I don't think I was before. I just have way too much faith in professionals I guess and it's always just like...you know. Skyscraper times.

(*I guess, in the interests of accuracy, I should say that I'm referring to people whose only developmental disability is autism and who tend to grow up with and socialize mostly with non-disabled people. I'm not sure if there's as much isolation for people with autism who also have intellectual disabilities and tend to socialize with other people who have intellectual disabilities--I have a few impressions, but they're not really enough to go on, and it's also not my experience.)

(**Of course I'm aware that some diagnosticians ignore these parts of the DSM, and will diagnose someone with GAD and autism, or whatever, if it makes sense to do so--but I'd rather not have to trust them to know to make that call.)

(Also, one good thing that I noticed is that you can have ADHD and autism now, which wasn't the case before.)

good brains wearing clothes

1. I can wear clothes that don't match (mismatched patterns, sneakers with a dress, pajamas in the daytime) and people will perceive this as an expression of my style rather than thinking that I don't know any better, or that my parents or guardians aren't taking good care of me.

2. I can go outside with messy hair, messy clothes, or a half-grown beard, and people will perceive this as an expression of my style, or lack of caring, rather than thinking that I don't know any better, or that my parents or guardians aren't taking good care of me.

3. If I am perceived as female and I don't shave, people will perceive this as an expression of my politics, or lack of caring, or gender expression, rather than thinking that I don't know any better, or that my parents or guardians aren't taking good care of me.

4. If I have a "childish" hairstyle (pigtails or braids, very long hair, a big cloud of curly hair) or if I wear clothes with children's cartoons on them, people will perceive this as an expression of my sense of humor, aesthetics, or interests, rather than thinking that I am like a child, or that my parents or guardians want me to be a child.

5. If I dress extremely nicely and formally, I don't feel like this is something I have to do to compensate for my disability.

(ETA: can someone explain lol_meme to me? I'm so confused right now.)

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

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

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

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

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

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

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

But anyway.

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

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

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

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

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