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.

I guess I just like hating things

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

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

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

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

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

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

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

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

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

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

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

And those are my thoughts about this for now.

About Me

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

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

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

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

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

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

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

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

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

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

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

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

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

The time I learned to say no

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

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

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

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

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

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

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

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