Experience placeholder

Remember how I'm always writing posts and saying "this is a placeholder for a longer post or a series of posts?" Usually I don't finish the series and the placeholder is all there is.

Anyway this is a placeholder for a series, some parts written and some not, about the idea of experience.

Experience is supposed to be this all-powerful thing that is impossible to measure or define and therefore is impossible to simulate. Even though it's not possible to measure experience, it is supposed to be possible to tell when someone's experience isn't real enough experience. If you are lucky enough to acquire real enough experience, then you get leeway to say horrible things and treat certain people however you want.

A good example is the response to the woman discussed in my previous post. Her comparison of her son to a mass murderer was wildly popular, and everyone who criticized it was chewed out for being "insensitive" and "judgmental." A repeated argument used against her critics was that they just didn't understand because they hadn't experienced what this woman had experienced. Sure, maybe on a totally superficial, divorced-from-context level, it might seem hurtful to publicly compare a 13-year-old to Adam Lanza because he makes threats.* But when you add the mysterious quality of "experience," the woman's behavior is legitimate and the most obvious judgment is wrong. People can feel good about themselves for understanding the complexity of the situation--which isn't to say they have to understand the facts, or even think about how they would feel in that situation. They just have to say, "Well I can't judge this person, it's complex."

Being around disability is supposed to be such an amazingly complex experience that when you make judgments about how to treat people with disabilities, basic decency and common sense go out the window. Is it wrong to do something violent, disrespectful, or mean to someone with a disability? Well, it's complex. No, it's not complex! It might make you feel like you are a sophisticated person with a grip on real world issues if you can talk about how these things aren't black and white, but it really just indicates that you either support unethical behavior, or don't have the confidence in your own convictions when the fairly meaningless quality of "experience" is invoked.

By the way, one of my coworkers at the non-Dream job is a woman who likes to bring up how inexperienced I probably am in the service of telling me that people with dementia should be treated like children and that anything bad our client reports about her is a lie. She is especially creepy, but I've run into a few people who assume I'm not experienced with disability because I like to treat disabled people normally.

I definitely went through a period in high school when I forced myself to swallow the whole complexity pill, but for a long time since then I have been learning to trust what's obvious. People with disabilities should be treated like other people and situations involving them should be judged the same way as other situations.

I've never seen anyone do this, probably because it's a dumb idea

Remember my lifelong fear that a prospective employer would google me and read my blog? Well it happened. The job is the Dream Job, the Platonic ideal of a job that has been hovering over all the jobs I've had before. Since it was the Dream Job I got it anyway.

I have had it for a while and I also have another job. That leaves one day that I could be earning money in. The day is Thursday. If you live in the San Francisco Bay Area and you or your family member needs an aide on Thursday (or a babysitter if they are a kid) you should think about hiring me. I would also work any night but Sunday if I'm allowed to sleep during downtime. (I wouldn't expect to be paid by the hour for that obviously.)

Think about it, you already know everything about me.

trigger warning

tw: recent mass murder and various discussion of other kinds

Nobody liked my original title/premise for this post so it isn't happening. Can I just point out something though about "I Am Adam Lanza's Mother," which is a boring viral post by a lady about how her son, who has autism or some kind of behavioral problem or PTSD, threatens suicide and murder-suicide a lot. I don't even remember the post that well, but I don't know how much more you need to know about it than someone publishing pictures of her 14-year-old on the Internet and saying that he is the same as someone who killed 26 people. I don't even care what her point about mental health services was supposed to be (the impression I get from her blog is that she likes guns, so she is trying to suggest "mental illness" is the cause of mass murders and the main policy issue that people should be thinking about in the wake of them).

Anyway, I'll say it again, I just really don't think it is cool to post pictures of an innocent child calling him a mass murderer just because he said he was going to kill his mom and himself when he was mad at his mom.

I don't think it's a GOOD thing when people with mental health problems regularly talk about killing themselves or other people, but it's just disingenuous as hell to act like people who do this are the same as mass murderers or even have much to do with any kind of murder at all. I don't think I have said stuff about other people but I've gone through a lot of periods where I would bring up killing myself in response to various small frustrations. It's not healthy but I think it is probably normal for people who are having really extreme emotional states and it means more that they need help with those emotional states than that they are going to carry out a premeditated crime.

I'd also like to point out that parents of kids with disabilities talk about murder, suicide, and murder-suicide all the time! I don't like for people to demonize Alison Singer because she did apologize, but she is a famous example of a person who talked about wanting to kill herself and her kid, and basically told her kid about that desire, and was praised for it. I can think of lots of other parents who have been praised for talking about this. No one compares them to mass murderers.

(PS I think it is interesting how much people seem to hate Andrea Yates, when if her kids had psych disabilities instead of her, they would probably feel sorry for her.)

I am feeling a little faint right now and this isn't the most well composed post in my whole blog (maybe I will have to delete it because this is a pretty risky thing to write about when I'm not at 100% cylinders), but these are just some thoughts about how people respond to threats based on whether the person making them can be categorized as disabled.

behavior vs. ability

Some people do different things or need different things from the average person. (Or the imaginary average person.) Other people have to decide how they feel about that difference.

1. Should the average person accept that some people do this different thing, and not be mad about it? Should institutions and communities try to adjust to meet the needs of these people?

2. Or should the person who's different change their needs to be more like the average person's needs, change their behavior to draw less discrimination and aggression, and be held responsible for any ways they get hurt if they fail to change?

As a person who does and needs some different things, I feel like option one is the right answer in most cases, unless the different thing someone does is being a serial killer. The majority of the time I feel like it's just a more interesting and efficient way to live.

However, usually a minority group's right to option one is supported or denied on the grounds of whether they can help being different or not. If you want someone to be responsible for your bad behavior toward them, you argue that they are being different on purpose.

One example I can think of is people who are against gay marriage and go around saying, "But gay people already CAN get married! They can marry the opposite sex!" This puts the blame on gay people for not changing our needs to match the majority. I also saw someone who, when asked if gay people were allowed in their religion, said that we probably wouldn't be interested in joining anyway. This implies that if people wanted to not be excluded for being different, we just wouldn't be different.

There is also the whole idea that poor people are poor because of some kind of moral failing and everyone who tries not to be poor isn't. Therefore not helping people who are poor is supposed to be tough love encouraging them to straighten up and become rich.

When people argue for option one, they say that the difference is involuntary. "I was born gay. If I could take a pill to be straight I would. The idea of kissing a man makes me want to throw up." Etc. What I think about this dichotomy isn't the point because it's so universal. If you try to talk about this stuff in other ways most people will not even know what you're saying. When you say that someone can't help being different, you're almost always indicating that you're on their side.

Therefore you can kind of tell what side someone's on just by how they talk about someone who is different.

Medical and mainstream culture descriptions of autism are steeped in option two language. They are very superficial descriptions of things Autistic people do, with the implication that Autistic people do these things simply because they like them, or for no reason at all.

1. "Autistic people stim" not "Autistic people stim BECAUSE" or "Autistic people have motor/sensory stuff going on that causes them to move like this or be soothed by doing this."

2. "Autistic people avoid eye contact" not "It scares Autistic people to look at other people's eyes."

3. "Autistic people avoid touch" not "Some kinds of touch can scare or hurt Autistic people."

4. "Autistic people have 'splinter skills' and strong interests and like to do the same thing over and over" not "Autistic people can learn specific things better than general things, and see number five."

5. "Autistic people like rituals and are resistant to change" not "Autistic people do better when they are in situations where they know what's going on and what's coming next, to the extent that some people can't handle life at all when it's not like that."

#5 has been on my mind a lot lately because the last few months have involved me having to do a lot of unplanned things and make a lot of sudden transitions. This has reduced my quality of life and my ability to do other stuff, which is clearly because I have a disability that makes it hard for me to emotionally and cognitive cope with surprise and change. However some people would say it's because I want to make out with train schedules.

Some OTHER people would probably say that because professionals don't know exactly why Autistic people do certain things (the reasons I'm giving are from Autistic cultural/anecdotal knowledge, not from books), they have to phrase everything in terms of what an Autistic person chooses to do. First of all, the reason professionals don't know why Autistic people do things is because they usually only study how to to make Autistic people not do things. I think their phrasing shows what they are interested in knowing not what they're able to know.

But I also I just fail to believe that people can't say, "It seems like Autistic people have to do this, for some reason."

I made up an imaginary mobility impaired person and I'm going to tell you a slightly unlikely but not absurdist story about his life. People are a little less likely to blame SOME mobility impaired people for their problems, which is why I think this story helps illustrate my point. But I'm also sure that it has literally happened plenty of times.

An imaginary kid named Sidney learns to walk at the usual age, but he always sits down crying after a few steps. Even when adults try to encourage him, the same thing happens. Sometimes they can bribe him with candy to walk across the room, but he cries while he's walking. When Sidney gets old enough to talk, he confirms that walking more than a few steps really hurts.

Not finding any immediate solutions, Sidney's parents continue to push him around in a stroller. Eventually they get him a wheelchair so he can be more independent. As he grows up, a few things change about how Sidney gets around, but since he is an imaginary person I won't go into detail. The short version is, he grows up to be an almost full time wheelchair user.

No one is able to trace Sidney's problem to a genetic condition or an injury to his legs or brain.

If a doctor describes Sidney's disability as "preferring to use a wheelchair and avoid walking," this doctor is not on Sidney's side. The description fails to acknowledge Sidney's experiences and implies that he's irrational. It doesn't encourage healthcare providers to try and help Sidney with his actual problems--in fact it may mean he can't access services he needs. It doesn't encourage other people to accommodate Sidney's wheelchair. It doesn't encourage Sidney to feel confident in speaking up against injustice, seeking help, and just taking care of his own body.

In many ways, this description of Sidney's disability can physically, emotionally, and socially hurt him. If the doctor says he wants to help people like Sidney, Sidney better watch out.

I went on Facebook before going to bed tonight and discovered that "Ron" from this post died this morning. I feel a little weird expressing too much grief about this, after all I haven't seen Ron in more than a year now.

He was one of the most original people I've ever known and he lived with so much joy and confidence in himself. More than anything I am so glad that Ron got to spend his life with his family, in his own home, with all the things he loved to collect. I'm glad that if anyone ever tried to stop Ron from living life his way, they did not succeed and by the time I met him (he can't have been older than 50) he was very set in his ways.

No one talked, danced, wrote, or thought like Ron. He wasn't just unique, though. He was kind and he was strong enough to ask for what he needed from other people. He was brave enough to be joyfully himself.

I am so sad that Ron has gone out of the world, but I'm glad that he was in it, and I'm glad that so many people with and without disabilities had the chance to meet him and see what a beautiful person he was.

Rabbits

When I worked in an institution I was afraid that I secretly liked institutions.

I was afraid that I liked the fact that I had a very specific job, that I would get told off for even trying to plunge a toilet myself instead of calling the person whose job it was to do that. I was afraid I liked all the alarms and call lights that worked in the same way, the small number of kinds of beds where once you knew how to operate a few of them, you knew how to operate them all. I was afraid that I liked every bathroom having the same color washcloth and the same brand of shampoo.

Obviously I am Autistic so on the surface some of this makes sense, but it's also something other than that. I was worried how deep staff infection went and worried that scheduled lives had started to seem normal to me.

I've been working in "home care" for a few weeks now and it's definitely hard for me to have to do stuff other than physical support when I have trouble cooking and cleaning for myself. But it's incredibly worth it.

I don't think I had really thought about the distinctness that a person's own home has. Not just the space but the way they do things, and how their ways and the space interact.

I love messy rooms full of dirty dishes, tables of grandmotherly objects like wind-up Easter rabbits and Christmas trees that are up all year. I love obsessively organized rooms too, with labels on everything. I love getting to work with someone who hasn't been moved across the long term care hall to a different room with a different stranger, but is living in the house where she raised her kids.

I feel very cheesy describing it this way but it does feel like my function is to be part of the machinery that helps someone keep being themselves, and that's really exciting.

Iceberg problems

I wrote something like this in a Facebook comment a long time ago and I realized I didn't ever write it up here like I was planning to. I've been thinking about it because it applies to a lot of things other than disability, but I'm sticking to disability in my explanation of it.

So from your (universal disabled person's) point of view, there's the stuff other people notice about you that's different or seems to cause problems. Then there's your actual problems, differences, and/or suffering which is going to be most obvious to you and maybe some people who are close to you.

I don't know if I'm explaining this well but just think of an iceberg, where people notice the tip of the iceberg but most of the reality of what the disabled person experiences is underwater. Here is an example about Clayton, hi there Clayton if you ever read this blog. (Aside from this most of the examples are going to be about autism.)

When people meet Clayton they notice that he walks and moves differently. Sometimes they wonder if his physical disability includes an intellectual disability. They find out that it doesn't, and then they think of his disability as consisting of how he walks. Sometimes they even come to feel that the way he walks isn't that different after all and then they "don't even notice his disability anymore" or "don't think of him as disabled."

They don't see fatigue and physical pain that Clayton suffers due to having CP, and he said that some people actually try to argue with him when he explains that his disability is more than the way he walks. This can happen with people he's been friends with for a long time.

It's obvious that people do this when they don't have experience with disability, but the weird thing is that they also do it when they do. It's a major trope in arguments between disabled adults and parents of disabled children that the parents will tell the disabled adults they're not really disabled or they're not really suffering. I don't think this is something that happens because anyone is an asshole. People just get really upset when they think someone is claiming an experience they don't really have and they see it as an insult to people who really do have the experience.

As far as I can tell, this is how it works: people see the underwater part of their family member's disability, and maybe they don't even see how things look to someone who doesn't see that. They don't see how maybe if a stranger meets their family member in the right context, for a short enough time, they don't notice how the family member moves or that they have trouble talking. They know when their family member is about to flip out from stress, so they don't realize that to most people, the person is going to appear calm until they're actually screaming.

If they notice that their family member is really good-looking or sweet or charismatic, they just see that as a coexisting thing or (depending on their attitude toward disability) maybe something that makes the whole situation even sadder. They don't realize that some people are actually going to be much more unlikely to notice signs of the person's disability, or admit the severity of the disability, because they find the person pleasant to be around.

Or, if they notice all of this, they think it's really awful and unfair that people don't understand that their family member is disabled and they wish people could see beyond the surface.

But at the same time, when these people look at disabled people who aren't their family member, especially people who they are inclined to see as other or as their opponents, they don't imagine there is anything beyond the most superficial and loudly stated markers of disability, and they even argue with those. They don't try to learn about what might be happening underwater to make this person identify so strongly as disabled. They don't just give the person the benefit of the doubt and assume there is probably a lot of stuff going on they don't know about.

(Probably my favorite thing was seeing someone argue that her kid is more severely disabled than other people who are perceived to be equally disabled to him, because she knows that he works really hard to appear the way he does.)

Obviously if the point of this post was to criticize parents who attack disabled people this way, I'm beating a really dead horse and my current one post a month output could be channeled in a more creative direction. Everyone knows it is boring and makes disabled people feel really bad.

However I haven't seen a lot of people acknowledge that disabled people do the same thing to other disabled people who they don't agree with. I can think of a few A/autistic bloggers and writers, who don't always have the same opinions about disability as each other, but who obviously feel that they have different opinions from most Autistic people who talk about disability and most Autistic-run organizations. Whether they talk in vague terms or about specific people, these writers usually seem to feel that everyone they associate with "anti-cure" or "neurodiversity" or "anti-ableism" is a homogenous army and none of us are as genuinely disabled as they are.

This is pretty interesting and I've had some conversations with these people where they try to argue that yes okay, maybe everyone can't immediately tell they are disabled from reading their blog, but they still have the right to call out other people and question their right to an opinion because they couldn't immediately tell they were disabled from reading their blog.

Of course this isn't limited solely to people who tend to chew out individuals and organizations that I like. I am a pretty big perpetrator of it myself. I tend to perceive every disabled person I meet as more skilled and/or better off than me in some way related to disability.

1. They are better at doing stuff than me.

2. They have more normal emotions than me.

3. They have a better work ethic than I do (which I guess is a way of just saying they have better executive function and don't ever want to cut their face off from being scared to the point that it is hard to do anything).

4. If it seems like they really are worse at all this stuff than me I just figure that they're probably dealing with it a lot better than I am so they're morally superior to me.

5. Or maybe they're not pushing themselves as hard as I'm pushing myself, that must be nice.

6. They have a disability that other people are going to recognize as being real, like they are in a wheelchair. Therefore they have it better than me because they don't have to feel bad about themselves and everyone understands what they're going through.

This doesn't make me very good at being compassionate towards other people or making friends with them, but you might be interested to know that occasionally people slip through and we become friends, and all of these things are usually NOT true. Most disabled people I've become friends with suck really hard at everything, push themselves really hard, and have a lot of problems that aren't immediately apparent.

Not to be overly broad but even people without disabilities can have underwater stuff. Depending on what someone's problems are (like if they have to do with belonging to a marginalized group) they might have more or less underwater suffering and work and experience going on. But we all have insides and we do ourselves a disservice when we don't work to recognize that.

(Note: I obviously don't think it is objective or even defensible to say that there are really "invisible" parts of a disability that no one can possibly notice without having them or being extremely close to someone who has them. We don't see a lot of signs of disability because we're taught to assume that no one is disabled. But even though I think it sucks, that is how most people function now.)