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.)

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.

the split

Clayton and I talked about how he got really upset when I said that I hate men.

1. he said that he was partly upset because when I said I hated men he assumed I didn’t include him and he feels like people have always not counted him as a man because of his disability
2. also that it just hurt

I tried to talk about “the split” which is really what I am thinking of when I say I hate men. It is just a feeling of parts of you being in a really deep opposition to each other. For example on Saturday a really kind and friendly bad brains man (about twice my age) sat next to me on the bus and I loved that we talked and it made my whole day better but:

1. he asked me if he could sit next to me and I basically couldn’t say no
2. he kept referring to my looks
3. he made me take off my sunglasses so he could look at my eyes
4. he asked me if I had a boyfriend

This didn’t really bother me because he wasn’t trying to pressure me into giving him information so he could contact me. It didn’t feel the same as that. But it is an example of how I hate men anyway. Why did he feel like that was okay? Why was it so normal that I didn’t even feel bothered by any of it?

This is the split and it’s hard to tell how I feel about it because I want to treat everyone with charity and lovingkindness and be interested in people even if they do something I don’t agree with, even if they do something I think is terrible.

But sometimes I wonder what is me being charitable and what is me being railroaded and just putting up with people’s privilege.

In high school my best friend was this really sweet lovely kid who was also such a straight guy. He didn’t treat me bad for being gay like the other straight guys but he still said ridiculous stuff like that he thought people were just pretending to be gay for attention. I loved this boy and something I love about myself is that I am a person who could love him even though he did stuff like that.

But damn there is something a little strange in it and I occasionally get spitting mad when it occurs to me how calm I am.

Recently I said something horrible to a friend from a minority group I’m not part of. There are a lot of things wrong with what I said but the worst thing is that I didn’t feel instinctively that it was wrong the way I would if it was something that was hurtful to me. So she had to explain to me how bad it was.

She wasn’t mad. She was really sweet about it, and in her calmness, I’m guessing, was the split between her and me.

if this doesn't make sense to you I'm way jealous

(First: I want to say that I might look at this in two days and think all of it is totally wrong.)

As someone who has always found "tumblr social justice" to be at least semi-useful 100% of the time, and funny when it's not very useful, I'm finding myself getting a bit worn out by the idea of privilege.

I actually don't mean this the way people mean it when they criticize the idea of privilege or say it is too widely applied. (Rest your chops and write me an email, please.)

I think what's kind of bothering me is this enshrining of privilege--what's bothering me is actually the idea of criticizing people because they consider something to be an oppressed group/privileged group dichotomy that you don't think is serious.

Yes, it can get very silly.

But it just bothers me when people start drawing a line in the sand about what silliness is. And I totally get if people read this and think I'm ridiculous. But I feel like if some person has felt really erased or somehow less-than, or like she has less of a future, because of some fact about herself, and then she's like, "Wow, this is how it works! This is why I felt like that--this was what was supposed to be the difference between me and other people!" that's, like, really cool. It's pretty cool to start seeing a system or pattern in something that previously just sucked.

Now, going to the doctor and having the doctor assume you are having sex, when in fact you're asexual--for example--is not like having someone follow you down the street and threaten you because they think you are having sex with someone of the same sex. It's not as important or urgent an issue.

But I also think it sucks and is a real problem and I'm happy for any person who is able to think and talk about why it's a problem, and I'm hopeful for the work that person will do--because I think the world will be better when different kinds of people are accepted as real, valuable, and natural.

One of the most frequently mocked aspects of "tumblr social justice," especially the teenage kind, is the way "oppressed identities" are treated like these buttons you can collect. I'm not saying I don't smile a little bit when I see some kid on their tumblr describing themselves as "Queer! Bisexual! Manic! Depressed! Bipolar! Crazy!"--apparently using as many synonyms as possible to make their list of identities longer--but I also feel excited about the buttonlike aspect, because I find it cool that instead of being like, "well my bipolar isn't that severe, and I've never been fired from a job because they knew about my diagnosis, and I'm not a psych survivor, and mental illness isn't a real disability...so I'll just crawl back under this rock," this person can just be like, "cool! I'm in!" and start looking at the world from that perspective for a while, and maybe start to understand some of the things that have happened to them as being part of a constellation of things that happen to mentally ill people.

The way people treat stigmatized identities and the people who carry them is pretty miserable. I think buttony tumblr culture makes this something that people can kind of start thinking about--maybe kind of lazily and shallowly, but shit, they should be thinking about it. And the majority of people have some kind of stigmatized identity that they can think about.

The idea that discussion of "oppression" has to be really hardcore, and that marginalization/abuse/stigma/fear has to be at a certain level before that group of people can be officially considered oppressed, just seems really...well, I get and agree with where it's coming from, but I ultimately feel it makes this stuff WAY less accessible. Because feeling like privilege is this heavy thing that you can't possibly understand doesn't make people interested or passionate.

But privilege is a really deep and consistent part of our world, and I think it's easy to start to understand it.

Privilege and the TPGA Dialogues

This is kind of a draft for a comment I want to write somewhere, but might end up not posting if I can't get it out right.

Basically, I see a lot of people talking about the TPGA dialogues as a situation when parents and self-advocates were both focused on the issues that personally affected them and didn't want to listen to the other side or didn't want to compromise.

As a person with a disability, I'd just like to say: I love parents. They're totally sweet. I read some parent blogs that I really like and that are helpful to me in thinking about anti-ableism more broadly (since most of the disabled people I meet on the Internet have certain abilities by definition). But this doesn't have much to do with the reasons a lot of Autistic people on the TPGA threads were saying things that made parents feel "uncomfortable" and "silenced."

I think it comes down to the fact that a lot of the Autistic people who were in the conversation are involved in the kind of Internet social justice atmosphere where the concept of privilege is very central. The article I linked to probably isn't the best explanation of privilege, but it is hard to find one article or blog post that explains it really well. But basically privilege refers to the benefits that someone has when they don't belong to an oppressed group. For example I have white privilege and class privilege (and a lot of other kinds of privilege).

A really important aspect of privilege is that a lot of people who have it may not realize that they have it or how much and this can lead to a tendency to center their own experience because they don't realize how much their experience is already centered. That tendency can take the form of feeling like something is being taken away from them when in fact a situation is being made more equal. (I'm not trying to attack anyone by saying this, I just want to explain the concept.)

Where I went to college, there was a fairly big community of students who either were trans or cared a lot about being supportive of people who were trans. In almost every student group and even occasionally in classes, it had become the norm to ask people to state their preferred pronoun when introducing themselves. This can make things easier for someone who is often perceived as a different gender from what they actually are, since they can address potential misunderstandings before they happen.

Sometimes you would hear people who were not trans, who were very nice people, saying things like, "I hate going around the room and saying pronouns. Like, 'I'm sorry I'm not special!'" Because they had never had to tell people what their gender was, they found it a silly thing to do at best, and at worst, they actually felt that they looked boring and "not special" when they asked for the pronoun that would probably already have been used for them. Even though their boring and "not special" answer was being given by most of the people in the room.

I've also seen a lot of non-trans people feel like they are being insulted when they are called the word "cis," which is just a synonym for non-trans. The word NT, while not one I especially like, doesn't need to be branded a slur by people without disabilities, but I have definitely seen them have that reaction. In both examples, people from the dominant group seem offended by the idea of being called any word at all, instead of just being the group that is nameless because everyone is assumed to belong to it.

I think you might be getting to see why this seems like too long and involved a comment to post on the blog of someone I don't know! But to return to the TPGA dialogues, it is believed in the social justice community (by social justice I mean a certain way of looking at the world) that the appropriate way to talk about oppression is for the people who don't have privilege to be the authority because they experience the oppression firsthand. This doesn't mean that people who are privileged shouldn't get to talk at all, but that if a lot of oppressed people are saying a particular thing about oppression, the privileged people should accept it is true, even if it means apologizing for something they did wrong.

Also, to reiterate, since privileged people often feel attacked just because a situation is being made more equal, someone who thinks about social justice this way is probably not going to feel guilty and back off just because a privileged person says, "I feel like I'm being silenced and people from my group aren't allowed to talk." In fact, the reaction is more likely to be, "What you feel isn't the point."

If a parent thinks that the problem with TPGA dialogues has to do with, for example, everyone only caring about how anti-ableism could personally help them, then I don't think they understand what happened. It isn't possible to understand a lot of the things said by people with disabilities if you don't, either academically or just personally, understand the concept of privilege.

this is a collection of tumblr posts so it may get longer

Maybe you know what's going on. If you don't that's okay. I don't want to use the person's name and maybe that's dumb but it just seems like such an archetypal situation that I don't see the point of causing drama. He seems unreachable. If you know who this is you already know. It's a non-disabled parent vs. disabled people internet drama thing. It is taking a lot out of me and I'm not even directly involved.

Zero

[I deleted this post immediately after making it]

has ted ever considered treating other people with 1% compassion? just do it! it'll be great!

One

also, before I go back to sleep, because I can’t yet thanks to this ridiculousness.

it happens to be a fact that at one point You Know Who wrote in an email to either Z or me (I don’t remember which, because it was a while ago and it was an incredibly horrible series of days in my life for reasons that had little to do with him but definitely exacerbated how much the situation upset me) something like this:

“when this started happening my friends started telling me that I shouldn’t try to talk to self-advocates because it wouldn’t end well and they wouldn’t listen but I tried to anyway and I’m really regretting this because everyone has been so mean to me and not listened!!”

okay dude, so let’s look at this.

basically he’s setting up the fact that he tried to engage with self-advocates (also known as disabled adults!) as, like, some kind of awesome favor. like, the baseline thing that you would expect would be that he wouldn’t do it. and his friends told him not to do it because self-advocates are not nice, or maybe just don’t understand these issues because they’re not smart enough. (but when it actually matters, we are smart and NLMC.) I mean, this is what I already don’t get, because if your work is about disability and making things better for disabled kids, how could you think listening to disabled people is anything other than vital? because one day your kid will be an adult who people are trying to decide if it’s worth it to listen to, or if engaging with them ~won’t be worth it~ or whatever.

but you’re trying to figure out if disabled adults are going to be nice/cool/~understanding enough to deserve your time. yeah okay. I hope you engage with your kid even if they wake up on the wrong side of the bed and aren’t reasonable or in a good mood. (disclaimer, my impression of You Know Who is he would do this because he seems like a really good dad, but I have NO IDEA why I am required to say this when I am disagreeing with him or why he thinks people are required to take his advocacy work into account when disagreeing with something he said especially because he clearly doesn’t give a fuck about what any of the ~disabled adults~ arguing with him experience or what our work has been like.)

anyway, this guy decides to be an epic saint and actually answer/talk to disabled people who disagree with him even though someone told him that the disabled people would just be dicks. and the disabled people in question…were dicks, in his opinion. so his conclusion is to like try to guilt-trip us because HE LISTENED TO US EVEN THOUGH HE WAS TOLD NOT TO BOTHER. because he’s the nicest guy in the world. and we weren’t nice back!!

but if you really care what disabled adults have to say then you just would listen and you wouldn’t think you deserve something for listening! AND if you think someone wasn’t nice to you (which I couldn’t disagree with more in this case) you would still want to engage because it’s important! you definitely wouldn’t be like “ooh this is starting to prove that I shouldn’t have engaged with you”

IN CONCLUSION, this is a really good way of making it sound like you want disabled adults to shut up and practically all you have done is say things like this!

Two

[obviously, this was also a direct comment on one of his posts]

Hi R, it’s Amanda. We talked a bit in comments and by email when this first happened, and (as I probably said) I can’t do this conversation well because it’s a big emotional/psychiatric trigger for me to hear people being told their disabilities aren’t significant. (I understand if you think I’m misinterpreting what you said or taking it too much to heart, but you said that Zoe lives independently and that isn’t true. That is a perfect illustration of why parents should not try to bring in personal information when having these conversations with self-advocates.)

So I apologize for messy/badly thought out parts of this comment. But I would like to point out that I’ve never seen Zoe try to represent the point of view of someone with a disability that’s different from hers or more severe than hers—just her own point of view. I feel that we start having this conversation where we argue the legitimacy of things that haven’t actually happened. I actually see you acknowledging/agreeing with a lot of things that Zoe said in her letter and I don’t really think there is a lot of disagreement when it comes to actual ideas. And obviously Zoe cares a lot about talking to you and engaging with you, because she is making an effort to do so and has initiated most of the conversations you’ve had.

The biggest difference of opinion that I see seems to be that you feel attacked but no one I know feels like they have attacked you. I didn’t think Zoe’s original post was that mean or aggressive, except for one word choice that she later apologized for. But you’re saying she turned you into a “bogeyman?” And that you wish you could have heard from her when you first made the post with suggestions of how to make it be more inclusive—but that’s exactly what her original post WAS. She linked it in the comments of your post because she intended for you to read it and think about it.

I think you’re a great parent who has done a lot of important work for AAC users. At one point in an email you said that my reaction really bothered you because I was a longtime reader of your blog and knew about your work. But I don’t see why or how someone is supposed to take your work into account when responding to something you said that they thought was offensive. A person can do good work and still say something that other people find worthy of addressing. Personally I’d be really happy if this conversation stuck to opinions and ideas and stopped being about anyone’s life or work.

(I have to say that when in posts and comments you have tried to talk about what any of us know or experience in our personal lives, you have often been wrong, as with the comment about living independently. Which is one reason I’d like you to stop.)

Anyway, I’m getting off track, but I have seen you say that you were turned into a bogeyman, take words out of context to turn them into examples of how you were insulted (like when someone wrote a post saying that you and Zoe had both made “dick moves” in the conversation, and you said that you’d been called a dick), Tweet about things that self-advocates have said to you in emails that you think were stupid or offensive, and tell people like Zoe who have been fairly polite that you would have happily listened if they’d been MORE polite. To me, it looks like you think you’re in this situation where people don’t like you and are trying to bully you. That is what is most confusing to me because I think you are wrong. If disabled people didn’t care about you we wouldn’t be trying to reach out to you and talk to you! Most of the things you’re calling attacks happened because A DISABLED PERSON WANTED TO ENGAGE WITH YOU. I can see why someone would say that this really makes it hard for disabled adults to talk, because no matter what we do, you react as if we’re punching you in the face. I really don’t get it, with the work you do for your daughter, that you make it seem like disabled adults have to meet an impossible standard for it to be “worth it” for you to listen. To me your work/parenting and your reaction to this situation seem like they belong to two completely different people.

Three

“People who are struggling just to live every day don’t have the luxury for discussions like this.”—one of Ted’s friends on twitter


HEAD MEET DESK
FOREVER

but….but….HE IS HAVING IT!!! so therefore he ALSO sucks

and you’re talking about it on twitter so you suck too!

everyone sucks! we all have luxurious not-really-disabled lives!

[Savannah reblogged this and pointed out it's kind of like "poor people can't have nice things if they're poor." it sort of reminds me of people taking pictures of homeless people who have cell phones and maybe that explains why it feels so hateful. the constant desire to assert that people in a situation that blows are actually having a great time.]

Four

you know, when ted and I talked by email he sort of (very unenthusiastically) apologized for doing the whole YOU’RE SO MILDLY DISABLED thing to Zoe, Julia, and me. I basically spilled my guts to him, I linked him to the page from the passing project where people talk about wanting to hurt themselves or become injured to opt out of “invisible disability.” (I have to make a new version of the passing project at some point because there is so much I left out, particularly in this area, because about three times more people talked about this kind of thing than I had room for.)

I tried to say, hey, I might be jealous of someone with limited speech because they get assumed to need support, while I’m presumed to either not need support or to be able to ask for it! But that is just a feeling coming out of my own shitty circumstances and it’s not VALID. And it’s really hurtful! So it’s not something I need to go around announcing, especially as a way to silence someone with limited speech.

so ted was like…okay. That makes sense. I was jealous too.

yeah, no. here ted was again yesterday, saying that people who can “live independently and self-advocate” (even though he’s talking to someone who doesn’t live independently, well never mind, SHE HAS A BLOG, obviously the most important ADL) have “privilege.”

now, the truth is I don’t really want to argue with this. I have privilege over, like, another lesbian who gets regularly perceived as a lesbian by strangers. for example I’m moving to Cincinnati which I’m told is kind of conservative/homophobic in some places, but for me, that doesn’t matter at all because no one on the street is going to assume that I’m gay. whereas someone who looks “more lesbian” has to think about this stuff when they think about where they’re going to live.

it’s complicated because passing can be tough, and especially in terms of disability, passing can lead to all these real problems of not getting support. being treated like I don’t have a disability, or seeing other people treated that way, actually sickens me, it’s just really horrible. so I’m not sure I’d use the word privilege when it comes to disability? but I’m not sure I wouldn’t either. what I do know is if I was talking to ted’s daughter about disability, I’d be aware that we have way different stigma experiences because she’s more “visibly” disabled, and that would probably be something I was thinking about just as much as I’d be thinking about how best to listen to/communicate with someone who has more limited speech and uses AAC.

but no one is talking to ted’s daughter! we’re talking to ted. so please someone explain how this is relevant.

different experience of stigma DOES matter, but I don’t think it means such a clear-cut, huge different in privilege that any non-disabled person needs to be telling disabled people about it over and over. or like going on his Twitter (seriously is he a high school girl??) and posting about how we’re “ignoring our privilege.” what does that even mean? what would not ignoring our privilege look like? do we have to start every post/comment we make with a little checklist of our privilege over ted’s daughter (as far as we can tell, since we’ve never met her, and like I said these things are far from clear-cut)?

now, here’s what I think. ted, despite being aware of what privilege means from a social justice standpoint, isn’t actually using it that way. ted just means that he thinks we have it easier than his daughter. which, as I said, is totally fine, people play those little games in their head and resent other people all the time for having what they think are easier lives. it’s when you decide that those feelings/games actually represent FACTS or are somehow political that…you become a huge fail.

imagine if I thought it was relevant whenever I argued with someone to be like, “You’re straight! You’re a man! You’re better-looking than I am! You’re from England, I wish I was from England, so you’re PRIVILEGED! Your parents sound like more fun than my parents are! STOP IGNORING YOUR PRIVILEGE.” now obviously in some ways this person is more privileged than me and in other, non-privilege-related ways they may also have a more fun life than I do, but like, this isn’t related to what we’re saying! also what if their parents aren’t more fun than mine are or they don’t feel like they are? aren’t I just making them feel upset and playing this weird game with them for no reason?

not only is ted saying all these kind of nasty and insensitive things about how great he thinks other disabled people have it, but he actually seems angry that we either choose not to respond or point out he is being ridiculous? like, he’s personally offended?

this really hurts because I am personally offended by being told I have it great and I very sincerely and unguardedly tried to explain this to him. and he was kind of like “I guess I don’t know as many diverse pwds as I should” or some other half-apology. but I would say it’s not just that he doesn’t know a lot of diverse pwds, but that his understanding of disability is really simple and flat.

his daughter is disabled and has a hard time, so therefore she has it the worst. even though she’s on the unified sports team for the most independent kids. even though she can walk and run. even though she can use AAC and can use some speech. even though she doesn’t look different like a lot of kids with brain formation conditions (like microcephaly and lissencephaly) do and therefore experiences less stigma in that area. keep in mind there’s no way I’d ever want to have this kind of contest with anyone, but there are plenty of ways that ANYONE has it better than someone else. his daughter is really disabled, he knows that because he knows her, so therefore he categorizes her disability as real/severe/significant and the rest of us who he disagrees with, or who have abilities he wishes his daughter had, are in the only other category he knows of, which basically amounts to “not real.”

what if we were all really disabled?

what if we all just looked different from each other, some people looked like conventionally cute kids and other people had different-shaped faces and heads or different facial features; what if some people could talk and some people could talk a little and some people could talk sometimes and some people could only say one word or no words; what if some of us could live on our own and some could but ended up hungry and unwashed and some people would die if they lived on their own; and what if some of us could stand up for ourselves in school and fight back if someone hurt us and some of us could write in a blog and some of us could give a speech and some of us were seen as fucking geniuses/miracles because we “made a full recovery,” but didn’t even have the “self-advocacy” to say no to unwanted sex because we were too scared or well-trained; and what if a lot of us had all these predictions made about us when we were kids, he will never type on a keyboard, she will never drive, she will never go to college, he will use a wheelchair, she will have seizures, he will never live on his own, and to some extent it doesn’t MATTER what we went on to do anyway because we still were kids who were talked about that way and when you make decisions about a kid you don’t know what they will do, if someone tells you that stuff about the kid, you accept it—so we live with that anyway. What if all of these people were disabled?

I worry, precisely because ted’s daughter, still very young, is gaining skills that were not predicted and is very conventionally normal-looking, that someday people will try and tell her she is not really disabled. and he has set himself up to be totally blindsided by that because he used to say that to other people, and he doesn’t understand why it is wrong.

Five

from my favorite story:

Lupin looked down at him with soft eyes. "He's hanging in there. Between the nightmares and the Dementors and the Death Eater attacks-- but Voldemort can't take Harry out. No matter how much he throws at him, Harry always pulls through."

"The Boy Who Lives and Lives," Neville echoed weakly, because that's what the Prophet was calling him now.

Lupin shook his head angrily. "The damn Prophet. Only a Qwik-Quotes Quill would call it living."

Your feelings are the feelings of a dick

Mourning people who are alive is fucked up. Fact! Members of the international brethren of people who are not dicks have been talking about this for fucking ever. Most of us are disabled though, especially when it comes to mourning people with autism. So try to understand how AMAZING Tom Fields-Meyer's post on Motherlode, the New York Times parenting blog, is.

Poor Fields-Meyer had the nerve to write a book about raising a son with autism, in which he outright says that he didn't grieve for his imaginary non-disabled child. After being encouraged to grieve by a counselor:

I had no instinct to mourn. I had carried no conscious notion of what my children would be like — boys or girls, tall or short, conventional or a bit odd. I planned only to love them.

Fields-Meyer was obviously dealing with some difficult stuff and doesn't make an effort to hide it, but nonetheless, after Lisa Belkin quoted him in Motherlode she got a comment from someone "bristling over the whole assertion that [Fields-Meyer] never needed to mourn...as a fellow autism parent, I can’t help feeling that a piece of this story was brushed aside because it didn’t fit the feel-good theme." Yeah, fuck you, Tom Fields-Meyer! How dare you feel different from how someone else thinks everyone feels?

Fields-Meyer wrote a pretty sweet guest post on Motherlode where he basically defends his lack of mourning. He doesn't tell anyone what they should be doing or feeling, but he doesn't really make it sound like not mourning is just an emotional reaction. It's a principle.

I had always believed that the biggest mistakes parents make happen because a mother or (more often) a father is disappointed by the way a child is turning out. Over the years, I’d seen acquaintances whose parents wanted them to be doctors, or wanted them to go into the family business, or didn’t want their child to be gay. These parents saw their children as damaged goods because the child wasn’t what they’d had in mind. I just never wanted to be that parent.

The international brethren of people who aren't dicks rejoiced. But what did everyone else do?



I'm sorry to tell you that sometimes I read the Twitter of someone whose Twitter I shouldn't read. It makes life awful. Sometimes it puts me in a bad mood for the rest of the day. Anyway, I was moseying along reading this person's Twitter, when my bad mood arrived!

The person and their friends were talking about how "skeptical" they were that Tom Fields-Meyer wasn't lying about his emotional reaction to having a disabled child, and insisting that they "weren't bad parents for saying it's hard." Did anyone say they were bad parents? Did anyone say it wasn't hard? (But you know that.) Basically Fields-Meyer gets turned into this GUILT MONSTER who's yelling at parents who grieve--parents who, I have to say, started this whole thing by accusing him of lying about his own feelings. Eventually the parents settled down a little--like, "Well, I guess it's okay for him to feel that way as long as no one is saying or implying anything negative about parents who grieve, or being judgmental about other parents' reactions."

Oh thank God. Those poor parents who grieve can't even step out the door without the vast throngs of judgmental parents who don't grieve just railroading over them and accusing them of being bad parents who don't understand how 100% footloose and fancy free it is to raise a kid with a disability. I am so sorry guys. Life is TOUGH.

This scenario doesn't really sound like anything I've ever seen in my life--like I said, the international brethren of people who aren't dicks is not a big group of people, especially when it comes to parent membership. But you know what, even if it was? No one has the right to have everyone agree with and support everything they do. Having a disabled kid doesn't give you that right and neither does anything else. People are allowed to disagree with you--both in a fairly gentle way where they just say that they prefer to do things differently, and by telling you that you're a major dick for doing things the way you do.

I personally feel that grieving for a person who is alive is fucked up, just like lots of other feelings that people have. I believe that there are feelings that are WRONG. Now, I am Christian, so I may talk about these things in a different way from people who aren't Christian, but what I mean is that we all are bad inside and have bad feelings, and sometimes we have to recognize a bad feeling and treat it like one. Some examples off the top of my head:

I hate waiting in line. Sometimes I want to scream or break something because I'm frustrated in line. Even when I'm not that worn out, I still can feel kind of angry at the other people in line, even though they're not doing anything bad to me. These are bad feelings and I shouldn't tell everyone in line that I'm mad at them.

Some people who don't know anyone who is trans might feel nervous and self-conscious upon meeting a trans person for the first time, or be consumed with nitpicky questions about how to treat the person "correctly." When you're in this situation, you wouldn't tell the person how uncomfortable you feel that they're trans, nor I hope would you go around telling a bunch of other people how uncomfortable you are. It's pretty rude and is going to make the awkwardness much worse.

A teenager sometimes feels jealous of her brother with a terminal illness, because he gets so much attention. She can't help how she feels, but is it reasonable? Would it be fair for her to talk about it constantly and insist that everyone around her validate her feeling?

And to return to an example that Fields-Meyer briefly touched on--some parents mourn when they find out their kid is gay. It's not necessarily as dramatic as disowning the kid. They just feel really sad because they thought they were going to have a straight kid who would do certain things, and now they have a gay kid who is going to do things differently.

How do people who don't consider themselves anti-gay think about these feelings?

People admit to having them. People admit to being sad and having to adjust, but ultimately these feelings are something to get past, and they are fucked up. They are feelings that come from living in an anti-gay society, and they are anti-gay feelings--the feelings of a world that wants everyone to be straight. Those feelings don't make you evil, but they are something awkward, something that can cause distance and a failure to connect with the real child--something to surmount. These feelings definitely aren't elevated as something parents have to have to have a valid experience. You wouldn't, I hope, accuse someone of being dishonest because they said they didn't mourn for their gay child.

I don't condemn anyone for having particular feelings but there is an obvious distinction between having feelings that are ableist--that come from a world that wants everyone to be non-disabled--and blaring those feelings in public with a self-righteousness that almost looks like pride. There's a difference between saying, "Wow, this blows, I'm having these awful feelings," and saying, "I have these feelings, and so does everyone, and don't ever judge me for having them or even make me think that you might be judging me." Because once you're doing things the second way, you're not just having the feelings, you're treating them like they're sacred. Like your right not to feel guilty for having picked up some ableism in your life trumps everyone else's right to be anti-ableist, or have opinions about parenting, or have opinions about anything that might involve you being wrong.

But okay guys, I have to talk about the guilt thing now. You can't even handle feeling guilty for a second on the Internet because some other guy might be "more self-actualized" than you are. You can't handle someone telling you that your feelings, although real, do not make sense. You can't handle someone like me coming out and saying, hey! Your feelings are bad!

If you can't handle that much guilt and judgment, how do you think you would deal with the guilt of being a disabled kid whose parents publicly talk about the fact that they expected a non-disabled kid and were heartbroken not to get one? Whose parents constantly defend their right to feel that way even when other people point out the dangers of nursing and normalizing those reactions?

I admit that most of this post has been making fun of you, because I've lived with guilt for too long to have patience for people who can't handle it. But I sincerely urge you to think about it, if you are one of those people and you somehow ended up here.

some disabled staff person fragments and facts

So I’m working at the summer camp I worked at last year, which is a sleepaway camp for teenagers and adults with developmental disabilities, and it’s reasonably progressive and all that. I mean, very, probably, I should be grateful.

But Disabled Staff Person is just hell. Always has been always will be.
2.
I’m crunched for time and if I try to write a really long well-thought-out post about why this is, I’m afraid I might never finish it, so I will try to outline this briefly. I think it’s really weird that heterosexism and cissexism are commonly used words but that there seem to be no equivalents for other kinds of oppression. On the one hand it bugs me when people use words like heterosexism and cissexism about situations that are clearly about hatred of ssa and trans people; I agree that words to describe oppression ending in -phobia are problematic and should probably be replaced, but words like heterosexism imply the problem is about normativity and kind of erase the impact of actual hatred and violence and discomfort and fear.

But normativity also blows, and one of the most frustrating things about it is something that’s also one of the most frustrating things about being disabled in general--the feeling of not just pain but being sure that your pain isn’t really so bad and shouldn’t even count.
3.
So during training for camp, we learn about disabilities obviously, and we sit there and someone goes, “So does anyone know someone who is autistic? What can you tell us about autism?” and someone else goes, “Well, I was an aide for a little girl with autism and they don’t like to be touched, like they really hate it.” This one guy even says, “Well, all the autistic people I know really hate the taste of ground beef.” Both these things are not at all universal and I find that the stereotypes about touch, in particular, can lead to a lot of problems. But even if they were saying perfectly accurate things, this is the most uncomfortable room for me to be in. I learned about autism not because I saw it, but because it was never outside me.

I can’t count how many times I have been subject to this kind of assumption, either in an able-normative group like in the above example or in a comment specifically directed at me--”oh, my daughter is interested in autism just like you are,” or the classic “good for you, it takes a special person to do that kind of work.” Clearly I cannot be interested in autism as something to “get into,” as it’s just always there for me to look at or try to escape; and I’m no more special as a counselor for disabled campers than non-disabled counselors are at a mainstream summer camp. But no one really considers that they might be directing their standard-issue comments at someone for whom what they’re saying doesn’t really make sense.

Sometimes I even get these comments when the person does know I have autism and probably would understand if forced to confront it that what they said is inconsistent. People also perpetuate able-normative environments when they know I have autism (like my professor who asked the class if any of us knew a person with autism who was in college). I guess they keep those two clumps of thoughts, “Amanda is disabled” and “disabled people are Other,” carefully spooned on opposite sides of a plate. The clumps never touch. They don’t change.
4.
I believe you always regret telling. There are exceptions, like Liam and Noah, but definitely no one I have worked with or for. Obviously everyone knows horror stories about people who were suddenly considered unfit for a job simply because their superiors found out they had a stigmatized diagnosis, but being stiff upper lip I’ve never had occasion to experience this. What happens to me is quite small: I work out that someone will be okay, and I tell them, and it seems okay; or I have worked out that someone will be okay and I consider telling them because I feel close to them or I think it would be in some way relevant to something we’ve talked about. Eventually, through the accumulation of offhand comments and reactions I realize that while this person is more okay than most non-disabled people, the chasm between their outlook on disability and a disabled person’s outlook is, well, not massive, but no less galling for that.

If I’m lucky, the first piece of evidence I get is the person’s selective memory. I mention that I have autism and they act all surprised even though I already told them. Or I make a comment that has certain implications when made by a disabled person, and they respond as though it was made by a non-disabled person. This is kind of a cool situation because just as I learn that the person isn’t really so “okay,” they tell me in the same breath that they don’t remember I’m disabled--so I can just slip back under the radar, fuck yeah.

Or if I’m lucky, I still haven’t told them and then I hear them say something about how “fascinating” and “textbook” a camper’s stimming is. (I see your “Aww but she’s in school, that’s just how people act when they’re in school” and raise you a “I’m not saying she’s a bad person but would you want to be around someone who treats the way you move like something on the Discovery Channel?”)

If I’m not lucky, someone knows and I know they remember and accept it as a consistent part of me which is swell, but then I start realizing that they have a certain lack of faith in the capacity of disabled people to perform tasks and come up with their own ideas. One time this happened with someone I worked for, and the chill of knowing that despite their stated anti-ableist beliefs they probably wouldn’t have hired me if they’d known made me sure I never want to tell an employer about it again. After all someday I’ll need a reference.
5.
You probably know this if you know me but for some reason I didn’t put it into words until a few days ago--my most surefire trigger to get in a state (crying, mania, self-injury/being suicidal) is being made to feel that my disability isn’t real, isn’t visible, or isn’t recognized by other people. In fact it’s hard for me to remember if I’ve had any states in the last year that didn’t have that at least as an aspect.

Last week one of my coworkers, who I had until then considered a friend and vice versa, told me that he thought campers who had meltdowns were “brats who needed discipline.” After unwisely plodding through a conversation about this topic, I ended up lying in bed for hours sobbing and thinking about stabbing myself with the scissors in my backpack (which I only didn’t do because I was sharing the cabin with three sleeping disabled kids). At maybe two I wandered outside my cabin and stood next to one of the camp bathrooms and called my best Autistic friend, who had to deal with my speech which was kind of in pieces. I was upset because what this guy had said to me had hit my trigger point, but also because I couldn’t talk to other staff about it. I mean, I did. I’ve contributed to this guy being unpopular by repeating his comments, because I really wanted to say them and have someone else say they were bad--and everyone did, but for other staff it’s not bad on the same personal level, it’s a professional disagreement, and ultimately I’m just one of many apparently non-disabled staff getting into some non-disabled staff drama.

Whereas for me it’s not about disliking him in a general sense, but actually feeling terrified and threatened; and almost getting sick from the distance between how kind and friendly he was to me (someone he thought wasn’t disabled) and how that kindness and gentleness apparently gets lost when he looks at a kid who has meltdowns or wanders or doesn’t listen to him.

Counselors have been met with and given a talk--no more gossiping about each other, and if we criticize each other we should do it directly. We’re supposed to move on from the drama. (Who is the we that is going to move on?)

That’s all for now. Fuck my life.

Fallacy Week: Form Over Function Fallacies

Hi guys it's FALLACY WEEK! Every day you get some fallacy action from a post I made a super long time ago at LOVE-NOS.

Form Over Function Fallacies
I guess that all fallacies of relevance kind of are form over function, but these fallacies are ones in which stuff that is just incredibly, incredibly content-free gets used to win an argument. Again, these are difficult to separate and define, and parts of them are familiar, so I won’t be overlong in describing them.

1. John has an intellectual disability. John and Mary are having an argument about something important to John, and he starts crying. Isaiah, who is also present, concludes that John is obviously too fragile to be thinking about this stuff or having these conversations, or is too childlike to understand the issues being discussed.
2. John and Mary are having an argument about something important to Mary, and she starts crying. John feels bad for being insensitive or being too fixed on a particular point of view. Or if he doesn’t feel bad automatically, Mary or Isaiah tells him that he should feel bad.
3. John has autism. He and Mary argue. Mary tells him that he is too fixed on his own point of view, because of his autism.
4. John can have many different developmental or psychiatric disabilities, but he usually has autism. He and Mary argue. Mary tells him that he can’t understand the experiences of other disabled people, or their families and staff, because his disability makes him insensitive and unempathetic.
5. The way John talks is unusual and/or impaired, and boy do Mary and Isaiah talk about that after he’s gone. He talks in a very rehearsed way or blanks out when asked a complicated question, so Mary and Isaiah figure that he’s either lying or has been trained by someone else and doesn’t really understand what he’s saying. He uses the wrong words a lot, or rambles, so he doesn’t really know what he’s talking about. He uses very simple words, so he isn’t being serious. Infinite examples.

Rebuttal:
I can’t really deconstruct these because they just are awful and if you don’t understand why, you never will. Anyway, it's the end of Fallacy Week! Go forth and argue.

can't imagine, can't judge?

(from LOVE-NOS)

Adelaide, actually I didn’t understand what line you were referring to with the terrible vs. unimaginable thing. I’ve been thinking about it more.
I think the difference between terrible and unimaginable is huge.

on the one hand, you can’t completely imagine anything if it isn’t your experience–and everyone should accept that that’s true.

for example, I grew up in a rich family. so if someone’s from a working-class family I’m obviously going to be like, I can’t speak from their experience and I’m going to give more weight to their opinions than mine re: class issues because I’m surely unaware of a lot of stuff. same for other oppressed groups that I don’t belong to. and I guess this is one kind of way of saying, “I can’t imagine your experience–not necessarily because I think it’s a terrible experience, but just, no matter what it is, because it’s not mine. so I’m not going to behave like an authority." But there are limits to this; if I strongly strongly disagree with someone’s actions/beliefs and they attribute their actions/beliefs to an oppressed identity or a terrible experience that I don’t have, and I really think about it but I just think what they did/think is not ethical at all…well, I’m still going to think it’s not ethical.

that’s not totally related but I feel like the response of “I can’t imagine your experience so I can’t judge you” is in SOME WAYS a good response to have, but I feel like when it comes to parents of disabled children, it gets way overdone. the raising/having of a disabled child is seen as so unimaginably terrible that other people are put in the position of feeling like they’re absolutely not ever, ever allowed to judge parents. of course we see this when parents of disabled children kill or seriously abuse their children or put their children in facilities where they are given shocks or take out their kids’ uteruses. anyone who criticizes these parents is constantly told, “you don’t understand the emotional pain/the financial pressure/the physical strain/the lack of free time these parents have.”

of course I don’t understand personally, because I’m not a parent. I try to be as aware as I can. I try to read blogs/watch movies/etc. about people with severe disabilities and their families so that I don’t just project my own experience of disability onto other people and families. I work with people with severe disabilities (I don’t do this to improve my thinking or anything, but just because it’s the type of work I enjoy the most and am good at-–but it helps my thinking, too). I try to think about how all those things could affect a parent–-and I also know that since I am not a parent, I can’t really imagine how it is.

at the same time, I think I can imagine enough to say: there are certain things that no parent should ever do to their kid. It’s not okay. I don’t believe there is some secret feeling that I can’t conceive of, that I would experience if I had a disabled child, and in this feeling would be the reason it is morally acceptable for me to abuse or kill my kid.

so, yes, I can’t imagine other people’s experiences-–but not to an extent where I am going to say, oh, I think certain experiences are so terrible that I’m not even going to begin to think about them, I’m just going to completely detach and not have any opinions about what it’s ethical for that person to do.

hurt, power, and disability

Fasten your seatbelts because this is LONG.

In high school I enjoyed reading flamewars between anti-s/m people and their targets, just because it never failed to make me irritated in a comfortably predictable way. It's only natural that I grew up to be fascinated by "but my child smears feces" and other ableist shock arguments, given that I spent my adolescence reading the arguments of anti-s/m people which often seem to consist of listing sex acts that, while enjoyable to the participants, sound gross or upsetting to the average person.

I think what makes me able to derive masochistic enjoyment (ha ha) from anti-s/m arguments, while ableist arguments just destroy me and break my heart, is that there’s less of a sense of immediate danger. A lot of the time, people who are making ableist arguments are in a direct position of power over disabled people, as parents, professionals, heads of an organization, etc., and are actively working to put their beliefs into practice. People who are making anti-s/m arguments often seem to be talking in this weird philosophical way about what sex acts other people should engage in or fantasize about.

I don’t mean to sound like I think s/m people don't get discriminated against, but when it comes to flamewars on the Internet my response to anti-s/m people is one of being annoyed and baffled rather than afraid. Because most people grow up liking whatever they like, sexually, so anti-s/m people seem to be implying that certain people just shouldn’t have sex, which seems like such an obviously douchey and ridiculous demand to make of another person that I can’t believe they spend so much time saying it and feeling as righteous about it as they do.

That said, if I was going to engage with the argument that people shouldn’t do s/m and/or d/s because it’s bad for your politics and your health, I would say that, in an alternate universe where people could choose what sexual acts they were into, there would be very good reasons for a disabled person to think about choosing to be into s/m and power exchange. As an inhabitant of the real world, I just think the intersection of s/m and disability is a happy accident for the people who experience it, rather than something anyone can or should “try” because it can destabilize and alleviate some of the bad parts of being disabled. But I want to write about what those destabilizations and alleviations can be, in the context of stuff like Failure Theory and The Classic Disability Catch-22. A few of the things I’m saying are specific to autism but many of them are not which is why I’m using the term “disabled,” throughout.

One by one I’m going to discuss hurting someone, receiving hurt, dominance, and submission, and what engaging in each of those four things might do, mean, or bring up for someone who is disabled. Most of what I write will be in the form of questions because I’m talking generally, and even if I wasn’t there probably would still be no cut-and-dry meaning or effect or answer.

Hurting Someone

(I’m talking about “hurt” instead of “pain” because I don’t want to imply that I’m only talking about physical pain. I do think hurt is a problematic word for me to have chosen because it seems to imply actual harm, which I obviously don’t think should be present.)

People with psychiatric and developmental disabilities are constantly living against the expectation that we’re going to be physically violent or, in the more “harmless” version of developmental disability stereotypes in particular, that we’re going to offend people and otherwise misunderstand what they want and need from us. Some of us experience police brutality due to being read as "dangerous" just because of the effects of our disability. The idealized behavior for a disabled person is that of working incredibly hard to fit ourselves around and into other people’s desires. If we don’t do this we risk various stigmas, some merely insulting and some negative enough to cause us to lose our job, be arrested, etc., when we haven’t actually hurt anyone.

So, if you live your life having been taught that you could hurt someone at any minute--or maybe you know that’s not true, but you still know that other people think that and you have to manage their reactions to you--what does it mean to decide to hurt someone, and do so carefully and in a way that’s enjoyable to them? What does it mean to realize that, actually, you are not on the verge of exploding and killing someone like in Of Mice and Men--that you can actually be in control of how you hurt someone, and do it “correctly” (for them)?

What does it mean to throw out your usual mindset--be nice, apologize a lot, don’t talk too loud, don’t move too fast? What does it mean for your concept of being a socially skilled person, being polite, or being a good person, if you interact with someone by a completely different (or even opposite) set of rules from your usual set, and this pleases them? Actually I do think there’s an answer to this one, but I’ll spare you the boredom of hearing it from me again.

This is something that I’ll come back to in every section, I guess, and it’s one of the things that is fairly autism-specific. What does it mean to work hard to affect someone in a certain way, and have them appreciate that and see it as something that takes energy and skill, instead of just expecting it?

Also--and this is a topping/hurting-specific thing I guess--in some people’s dynamic, you could even hurt someone in a way they don’t like, and that would be fine; within limits, their feelings are irrelevant to what happens. What if the way you and your partner/s do sex is that you do whatever you want and they’re expected to adjust to you?

Receiving Hurt

One of the most important qualities for a successful disabled person is the ability to bear pain quietly; and not only should you bear pain quietly, but you should bear pain quietly, quietly. The most perfect disabled person receives emotional and physical discomfort and pain with a complete poker face, and this is in the service of a goal: appearing to experience the same amount of pain as non-disabled people, and for the same reasons. Which is to say that the most perfect disabled person appears non-disabled and is not admired by anyone for her stoicism because, if she’s doing it right, no one knows she has anything to be stoic about. If you’re disabled, you deserve to have pain as an invisible constant force in your life, and you deserve it so much it’s not even worth mentioning.

While I’m at it I should mention that some disabled people don’t know what we want, or what hurts us, or what harms us. This can be because of cognitive and language aspects of our disabilities (not being able to sense we’re in pain, or articulate it), or because we have chronic pain and become inured to the sensation, or because people are always telling us what a normal person would be feeling or wanting in our situation, or a combination of those things.

What does it mean to say that you want pain, when you’ve spent your whole life pretending pain doesn’t exist because the expression of pain is so horrifying to people? What does it mean to be able to tell someone that you are or were in pain without this being something that makes them either pity you, or resent you because they see you as lying or exaggerating your pain to get pity?

What does it mean if someone actually enjoys your reaction to being in pain, and wants you to say and show them that you’re in pain? Conversely, what does it mean if you can be very stoic about pain, and someone actually appreciates that about you and sees it as a special skill, instead of a prerequisite for being respected as a decent and competent person?

Also, what does it mean to have it actually be important and expected that you try to figure out what level of hurt is harm, and what your limits are? What does it mean to have a word that means “this isn’t okay it has to stop,” and the other person’s actually supposed to listen?

(I just realized that I was using the word pain instead of hurt for this whole section. I still meant it in the broadest possible way.)

Dominance

In The Classic Disability Catch-22, I wrote that in order to be seen as the kind of disabled person who deserves to be successful, you must make it appear as though there’s nothing you can’t do. This means that you have to perform beyond your means, damaging yourself in the process, and/or lie and trick people into thinking you’re doing things you’re not actually doing. Because of the dishonesty and recklessness involved in fulfilling this requirement, no one who is perceived as belonging to this elite class of disabled people actually feels secure as a member of that class. This is Failure Theory. Of course, people who aren’t perceived as belonging to that class of disabled people have it a lot worse; they have shown the wrong kinds of weakness and impairment, and barring some extraordinary feat of illusion or strength, they will not be seen as deserving the support or acceptance they need to achieve their goals.

There’s also the issue of “body language” and what that means about your sense of power, authority, and control in the real world. If you look disabled, you look like prey. You may look, to some people, like you shouldn’t be out on your own. Your eye gaze or the way you speak may cause people to read you as shifty, incompetent, frightened, or shy--and given the way people read you, you probably do feel shifty, frightened, and shy, and may be beginning to wonder if you are incompetent.

You may be told that in order to deserve respect, or to be seen as a competent or smart or secure person, you have to have the ability to speak in a certain way and look at people in a certain way; or, as discussed in the “receiving hurt” section, you may have to be able to be stoic about things that you simply can’t be stoic about.

When someone decides to submit to a person who is stuck on one side or the other of the Classic Disability Catch-22, is regularly mistaken for a child, starts crying on the subway, needs help getting dressed, can’t speak loudly enough to be heard by most people, etc. etc. etc., this is a dissolution of standards about what kind of person is supposed to be allowed to have authority and control, whether by the standards of society or by the person’s own standards (in the case of people who are read as non-disabled or successful disabled people, but suffer from Failure Theory).

Submission

Obviously submission doesn’t have to do with whether someone is “weak” in a pervasive sense, but for a lot of people being submissive involves doing and saying things that are associated culturally with weakness and vulnerability. It also sometimes involves letting go of control and doing what someone else says.

So if you’re in a position, in real life, where you have a chance to be successful only as long as you never show weakness, then what does it mean to be able to express weakness with someone and not be destroyed by it? To have someone actually like and enjoy that part of you, and want to see it, and still respect you when they see it? On the other hand, if your real life position is one of being fucked over because you’re read as weak or because there are things you can’t do--again, what does it mean to express weakness or inabilities to someone and have them think it’s cool, and have them respect you regardless?

Performing weakness, or allowing yourself to sincerely experience weakness, is an act that is comparable to the act of deciding to hurt someone. It involves a similar controlled reversal of the values and goals you usually hold yourself to, and an embrace of the person you’re afraid of being.

I find it astoundingly privileged when anti-s/m people talk about how, for example, doing power exchange is “bringing in” all these terrible things from the outside world into your relationship. When you’re disabled, lack of power is such a huge part of who you are that it’s hard to imagine that not being a part of any relationship you have. So, like, that would be really cool to be worrying about “bringing in a hierarchy” or “bringing in brokenness” into a relationship. It sounds like a charmed life.

I haven’t come across much discussion of the s/m and disability intersection; staticnonsense’s Kinky Disability posts, which I love, are really one of the only attempts to address the issue that I have seen on any disability blog. Before the Disability Internet, of course, there was Bob Flanagan, but I haven’t done enough research to know if he was part of any kind of movement. I feel nervous about posting this because it is so long and I haven’t really written about any kind of sexuality before, but I just think this intersection is a really fascinating one and worth talking about.