things that are complicated

Diagnosis only goes so far

The way medical diagnosis works can often make disabled people feel fake. (Any kind of disabled people, including people with mental illness or chronic illness). There’s a widespread culture misperception that real disabled people have a clear professional diagnosis, and that everyone else is just faking it for attention or something. It doesn’t actually work that way. Diagnosis is more complicated than that.

People with disabilities are disabled whether or not anyone has diagnosed their disability. Diagnosis is an attempt to recognize the underlying reality (and often an attempt to get someone access to medical treatment or services.) But it doesn’t change the reality. Someone diagnosed today was already disabled yesterday. Many people are disabled for years or decades before they get access to accurate diagnosis. Being undiagnosed doesn’t necessarily mean you’re not disabled. It just means you haven’t been diagnosed with anything.
In addition, some conditions aren’t currently diagnosable, because they have not yet been identified and named by doctors. If a condition was discovered for the first time today, someone had probably already had it yesterday. And last year. And back and back and back. Being undiagnosed and currently-undiagnosable doesn’t mean that you’re fake. It just means that you don’t have an answer.

Even when there is a diagnosis, there is not always an explanation. Some diagnostic categories are vague and unsatisfying. Some diagnoses amount to a list of symptoms you already knew you had. These kinds of diagnoses allow your doctor to bill your insurance and may get you access to treatment, but they don’t always give you answers. Being diagnosed with something vague doesn’t mean you’re fake either. It just means that you don’t have an answer.
In addition, diagnostic categories are often approximations that don’t quite describe reality for everyone. It’s fairly common to meet diagnostic criteria imperfectly. Or to have an atypical form of a condition. This doesn’t mean you’re fake either. It just means that reality is more complicated than textbooks. (Being similar to the textbook also doesn’t mean that you are fake; it just means that sometimes the textbooks are right about some people.)

Even when diagnosis gives you a lot of answers, it often won’t give you all the answers you would like to have. Mostly disabilities are fairly poorly understood. For most people, disability involves significant amounts of uncertainty, and many unanswered questions. 

I don’t want to overstate this. Sometimes diagnosis does get you real answers. Even when it doesn’t, it can be very important. Often, even without answers, diagnosis can make your life a lot better by getting you access to treatment, support, or accommodations. Diagnosis can also mean that someone gets treatment or support that keeps them alive. Diagnosis is often very important for any number of reasons. It’s just not the ultimate decider of who is and isn’t really disabled. Disabled people who aren’t diagnosed with something that fully explains their symptoms are real disabled people, and their needs matter just as much as anyone else’s do.

tl;dr Disabled people are disabled whether or not they are diagnosed. Diagnosis recognizes reality; it doesn’t create it. There are a lot of reasons why some disabled people aren’t diagnosed, or aren’t fully diagnosed. Scroll up for more explanation of why that is.

The Glee of Malice

wisdomengine:

realsocialskills:

wisdomengine:

realsocialskills:

The red flag is when someone’s saying bad things about other’s is like — a hobby, or something. It’s hard to describe. But it’s very destructive.

wisdomengine said:

I have a guess at what you’re trying to get at: that it’s when the person takes pleasure in relating bad things about others. Of course sometimes we have bad things to say about others, whether negative information to share for others’ benefit or negative feelings to vent. But there is a world of difference between, “I’m concerned Tom is stealing from the till” (relating information) and “That Tom is no good, and I bet you he’s been stealing from the till — mark my words” (reveling in a negative judgment of another’s character).

There’s various ways people demonstrate taking pleasure talking ill of others. Perhaps they allege these negative things about another in a tone of voice that is jovial and light, as if what they were saying were funny and they think you would be inclined to laugh. “Oh, you know how she is, always the spaz, ha ha.” Perhaps they use a tone of voice which is satisfied or triumphant, and they are crowing. “Didn’t I always say that he couldn’t handle the pressure. Goes to show!” Perhaps they use body language that is not that of someone saying something they’re upset about, but something they’re pleased about — they’re not frowning, they’re smirking; their eyebrows aren’t dropped in consternation, they’re raised in knowingness; they don’t sigh and speak slowly like one sad or hurt or confused, they wave their hands casually and rattle off words like machine gun bullets. They use witty putdowns, and seem to be very satisfied with the cleverness of their snark.

Or perhaps they say these things in a way which telegraphs that they intend it as a commiseration, expecting you to agree with them as a means of social bonding, the way people commiserate about bad weather. “The receptionist screw up your appointment, too? I don’t know she ever gets it right. I don’t know why they don’t hire someone who can read.” Stereotypes and *ist epithets often get used this way. “What do you expect from a ____ like that?”

Perhaps they don’t betray any pleasure-taking in words or voice or face or posture, but do the concern troll thing, where they’re terribly, terribly concerned about someone else’s faults… and its always someone different, and they seem to need to have someone to be so concerned about, and in fact never have anything to say except negative things about one person or another, to the point you can’t recall ever having had a conversation with them which they didn’t center on disparaging some absent third party.

All of these are ways that someone might betray that they enjoy “talking smack” about others. And someone who enjoys talking smack is usually not a great person to involve in one’s life, for all sorts of reasons from they’ll eventually talk that way about you to when the other people who know that this person talks smack is someone you’re hanging with, what do you think they’ll conclude about you and whether they want to be your friend? to do you want to fill your ears (and your perspective on others) with that kind of relentless negativity? to we become like whom we cleave to. It’s not going to make you kinder, more charitable of judgment, more patient with others, a better friend, or more socially adept to hang with someone who uses others for verbal target practice.

realsocialskills said:

That sounds closer, yes.

That said, sometimes this can be misleading when you’re talking about abuse victims. People who’ve been abused often find it satisfying when other people dislike their abuser and notice the bad things they do. They also often find it satisfying to see the abuser fail to be accepted in communities, especially when that person’s access to an apparently safe community is a reason they trusted them.

That pattern can look similar to how people who just like to tear people down talk. It’s not the same, though, and someone feeling this way about an abuser isn’t a red flag about their ability to respect others.

Context matters.

wisdomengine said:

*blink*

*blink* *blink*

My dear realsocialskills, I believe you have just put your finger on exactly why sexual abuse and assault victims receive the heart-breakingly familiar response they so often do, of being socially rejected, “Oh I don’t want to choose sides”, disbelief, and discrediting.

I mean, yes, sure, there’s all that stuff of wanting to believe the perp is a grand person, and It Couldn’t Happen Here We’re All Such Nice People and so forth.

But… most people can’t tell, can they? Some domestic violence victim starts talking about what happened behind closed doors, speaking with outrage of what was done to them, trying to convince other people that the perp doesn’t deserve their warm regard… and what they recognize it as is talking smack. Negativity. Trying to pull someone else down for purposes of personal satisfaction. So they put the person off. Their scripts for discouraging others from saying those sorts of things kick in, automatically.

I’m going to go think hard about this. I think it matters very much.

realsocialskills said:

It gets really, really complicated. There’s a lot of thinking that needs to be done about this.

rockinlibrarian:

Social skills for autonomous people: rockinlibrarian: Social skills for autonomous people: another thing…

Agh, wow, this is exactly why I don’t like Tumblr (I say even though I’m using it now)! I CAN’T JUST REPLY to all the nice people who replied to my confused-emotional-rambling-that-I-thought-no-one-would-read-anyway yesterday! I’d like to say thank you and yes I like all your thoughts and you are not alone and thank you for showing me that I am not alone to EVERYONE who commented on my comment, but I’m afraid that would mean “reblogging” this at least five times.

So for RealSocialSkills, at least, I can say, oh, please don’t worry, it was a good post and obviously lots of people appreciated it as is. My problems are my problems alone and shouldn’t be anyone else’s responsibility! I think when ones heart is in the right place, even when what they do isn’t perfect, it’s not wrong. Thank you for engaging me in conversation, especially when I didn’t think anybody was reading what I was saying anyway!

Thank you for both of your replies.

desktopwithsources:

realsocialskills:

rockinlibrarian:

Social skills for autonomous people: another thing about privilege

sarahreesbrennan:

realsocialskills:

If you have a lot of privilege, you’ve learned to take up all or most of the space when you’re around people below you in the hierarchy. 

It’s important to learn to stop doing that. It’s important to learn how to be in a space without dominating it. It means learning to listen to people you’ve been systemically taught that it’s ok to talk over.

This can be hard to learn. When you stop dominating spaces, you have to live with less control, space, and attention than you’ve become accustomed to. You’re going to feel constrained, and like the other people are taking up all the space — even if you’re still taking up most of it.

And, once it becomes clear that you’re trying, people will express anger at you a lot more than then used to. This might feel really unfair, since you’re acting better than you ever have before, yet you’re attracting a lot more anger and criticism. 

The reason it works this way is because people used to put up with you treating them badly because they didn’t see any point in objecting. Most people who have privilege and power over others don’t especially care about how it hurts people. Further, a lot of them get really angry and retaliate when it’s pointed out. You’ve shown that you’re someone who might actually listen. That means you’re the one who gets yelled at.

It’s not fair, but the people who are yelling at you aren’t the ones responsible for the unfairness. Don’t get angry at them for it - get angry at the people like you who aren’t getting yelled at because they don’t give a damn. And maybe start calling them on it and make their indifference cost them something. You’re probably in a much better position to do this than the people below you in the hierarchy. 

And keep in mind that the situation faced by the people who are yelling at you is a hell of a lot more unfair than the situation you’re in.

That said, don’t beat yourself up for feeling frustrated, either. This is hard, and it’s ok to find it difficult. You’re going to make mistakes, and some of this is really going to suck. That doesn’t mean you’re a bad person or that you can’t learn how to act right. (Also, sometimes people will tell you that you’re oppressing them when you’re not. You can’t automatically assume that everyone is right when they tell you off — but if you’re in a highly privileged group and you think *everyone* who is telling you off is wrong, you’re probably the one who is wrong.)

Just keep trying, and don’t make the people below you responsible for making you feel better.

It can be TRULY HORRIBLE to be yelled at, while others (often doing stuff you think is terribly, terribly wrong, often who are much more successful and powerful than you) are not yelled at… and sometimes join in the yelling at you. It feels extremely unfair.

But how much more horrible is it for other people who have had to deal with unfairness for years and years, unfairness they cannot opt out of.

Huh. Privilege? I’m supposed to be more privileged than average: white, American, straight, highly educated, (raised) middle-class by loving-and-still-married parents— I don’t think being female and now educated-working-class makes me underprivileged enough to consider myself NOT highly privileged. So is this really about privilege? Not just a personality trait thing and it may be EASIER to have certain traits with certain privileges? Because it’s the exact opposite of me. Lord HELP me, it’s the exact opposite of me. At some point in my childhood I developed the Invisibility “superpower.“ Seriously, people who claim they’d want Invisibility as a superpower obviously have never EXPERIENCED Invisibility. The thing is, right now in my life, in my psychological therapy exercises, my general attempts to grow as a human being, I’m trying to stop being invisible. I’m trying to become aware of how I unconsciously try to take up as little space as possible. I’m trying to convince myself that I DO have just as much right to exist as everyone else in the world does. I’m trying to learn to SPEAK UP, and assert my opinions, and acknowledge that I have needs and wants of my own (even though I’ve been so good at denying this that MOST TIMES I DON’T EVEN KNOW WHAT THOSE ARE). So, since I’m Privileged… do I NOT need to do this? Because if I do I WILL be automatically taking up too much space? I know, I’m being stupid. I’m missing the point. I’m derailing the Important Conversation that needs to take place. (But how derailing can I be if only 3 people follow this Tumblr anyway?) I’m making it ALL ABOUT ME. PITY ME, BOO-HOO. Yeah, I guess I’m taking up too much space already just because I have feelings and confusions of my own. But at the same time I’m SUPPOSED to start doing this, expressing myself and all. So that’s what I’m doing. I’m not trying to derail anybody. I’m just trying to speak up about how hard it is to convince myself that I have a voice that needs to be heard when so many well-meaning people keep saying that my SORT of voice needs to be heard less. Maybe I’m just hoping somebody will tell me otherwise. That NO, obviously, nobody’s saying that if you’re Privileged at all then you need to go dig a hole for yourself and fall into it rather than try to be an active, creative person. But then again, the other thing I need to learn is to stop relying on other people for approval. GAH. Growing is hard.

This is a reason I think I wrote that post wrong. I’m sorry.

Privilege is — a concept that I think is kind of wrong shaped. It doesn’t quite mean what I’d like it to mean, to communicate the kind of power dynamic I’m talking about.

I agree that being taught to be invisible is horrible, and common, and hard to overcome. For whatever reason it happens. And that you have to think for yourself, and work through your own perspectives on things. You can’t learn to do right by others if you’re trying to erase yourself.

And, all too often, discourse about privilege can get people to think they should be deeply ashamed and try to erase themselves. Or that privilege is something they should be constantly naming and atoning for. And no good comes of that. The point is to be aware of power relationships, and things that hurt people, and treat people well in the face of what is.

Everyone has some sort of privilege. Everyone has some sort of power over others. It’s not a sin; it’s something it’s important to be aware of and deal with. Because unacknowledged power is dangerous.

I think it’s worth being away that learned invisibility is harder to overcome if you’re also being held down by racism. Or by being dependent on people who want you to stay invisible for medical care you need to survive. Or sexism. Or poverty. Or any number of other things. Especially if a lot of them apply to you.

Because stuff like that matters. But it doesn’t mean that your problems aren’t real, or that it’s all a matter of box checking or anything. Isms are — part of the world. But not the only part. And, push come to shove, you have to think for yourself, rely on your own judgement, and do what you can to make it as good as possible.

I’m sorry I posted that post prematurely.

This is a problem that I really had/have too - having discussion of privilege just reinforcing my anxiousness that I shouldn’t talk, shouldn’t have needs, etc. And realizing some stuff has helped me with that, so I wanted to say about the thing above - first, actually being female is *huge* for this. There were posts going around about studies with this - here’s one and here’s one. 

if there’s 17% women, the men in the group think it’s 50-50. And if there’s 33% women, the men perceive that as there being more women in the room than men.

and

Another study reported that a male science teacher who managed to create an atmosphere in which girls and boys contributed more equally to discussion felt that he was devoting 90 per cent of his attention to the girls. And so did his male pupils.

So even for people who are privileged in other ways, sexism does enormous amounts of damage. 

The other thing is - people talk about ‘taking up space’, but they don’t always elaborate on which space they’re talking about. So, first, the spaces this applies to in its most ‘extreme’ form so to speak are safer spaces meant for people on the oppression side of the privilege in questions. So, if I’m white at an anti-racist meeting, or a man at a feminist meeting, etc, that’s where I should generally be quiet and listen. 

And then the next space in question is basically any space you share with people on the oppression side of privilege you have. So again, if I’m white and, for instance, at a planning meeting for something, I need to make sure I don’t contribute to an atmosphere where only white people are talking and everyone else gets talked over. 

But, conversely, if I’m female and at a planning meeting (or in a relationship, or in a group, etc), then I might get that issue in the opposite direction, where male-privilged people are not giving *me* space. So it’s not ‘I’m have X amount of privilege, so I should talk less’. Privilege isn’t about numbers. It’s ‘I have this specific privilege over some people, so it’s very easy for me to talk over them without noticing, so I need to watch out for that and work on not doing it’. 

And, finally, I am always allowed to take up as much space as I want when that space is mine to begin with. So on my own tumblr, or blog, etc, making my own posts, I get to talk about myself all I want. I’m not pushing anyone out - that’s *my* space. 

Reblogging for commentary.

I want to think more about how this applies to things like activist spaces, art spaces, and businesses - because sometimes it is possible to create a space but then have some obligations in terms of representation and taking up space.

I agree that on your own blog you get to talk about whatever you want and that can’t be pushing people out; your blog is your platform and it’s not one others are entitled to stand on. Some things are similar to blogs in that regard; some aren’t. I want to think more about where the lines are.

karenhealey:

Social skills for autonomous people: another thing about privilege

sarahreesbrennan:

realsocialskills:

If you have a lot of privilege, you’ve learned to take up all or most of the space when you’re around people below you in the hierarchy. 

It’s important to learn to stop doing that. It’s important to learn how to be in a space without dominating it. It means learning to listen to people you’ve been systemically taught that it’s ok to talk over.

This can be hard to learn. When you stop dominating spaces, you have to live with less control, space, and attention than you’ve become accustomed to. You’re going to feel constrained, and like the other people are taking up all the space — even if you’re still taking up most of it.

And, once it becomes clear that you’re trying, people will express anger at you a lot more than then used to. This might feel really unfair, since you’re acting better than you ever have before, yet you’re attracting a lot more anger and criticism. 

The reason it works this way is because people used to put up with you treating them badly because they didn’t see any point in objecting. Most people who have privilege and power over others don’t especially care about how it hurts people. Further, a lot of them get really angry and retaliate when it’s pointed out. You’ve shown that you’re someone who might actually listen. That means you’re the one who gets yelled at.

It’s not fair, but the people who are yelling at you aren’t the ones responsible for the unfairness. Don’t get angry at them for it - get angry at the people like you who aren’t getting yelled at because they don’t give a damn. And maybe start calling them on it and make their indifference cost them something. You’re probably in a much better position to do this than the people below you in the hierarchy. 

And keep in mind that the situation faced by the people who are yelling at you is a hell of a lot more unfair than the situation you’re in.

That said, don’t beat yourself up for feeling frustrated, either. This is hard, and it’s ok to find it difficult. You’re going to make mistakes, and some of this is really going to suck. That doesn’t mean you’re a bad person or that you can’t learn how to act right. (Also, sometimes people will tell you that you’re oppressing them when you’re not. You can’t automatically assume that everyone is right when they tell you off — but if you’re in a highly privileged group and you think *everyone* who is telling you off is wrong, you’re probably the one who is wrong.)

Just keep trying, and don’t make the people below you responsible for making you feel better.

It can be TRULY HORRIBLE to be yelled at, while others (often doing stuff you think is terribly, terribly wrong, often who are much more successful and powerful than you) are not yelled at… and sometimes join in the yelling at you. It feels extremely unfair.

But how much more horrible is it for other people who have had to deal with unfairness for years and years, unfairness they cannot opt out of.

Personally, it helps to hold onto why I’m engaging in this process in the first place. I’m not trying to check my privilege because I want people to be nice to me; I’m trying because I want to address the pain that inequity causes, and a foundational step is improving and monitoring my own behaviour.

Mmm goals-focused processing.

On reflection…

…I kind of don’t like my original post anymore. I don’t think it was ready to be posted. Because it seems like it’s endorsing things that I actually don’t think.

I think everything I said was true, but I also think it was misleading.

Because someone being mad at you doesn’t necessarily mean you’ve done something wrong. Even if someone is mad and thinks of what they’re doing as calling you out. It’s possible, and common, for people to think that and be wrong.

I think what I wrote was too general, and too misleading. And, as written, a bit removed from what I’m aiming for here. I want to explain stuff in a clearer way and not be shaming people for innocent mistakes, and I think I failed with that post.

And, also - I feel like  I’m missing something important about this, and that ignoring the part I’m missing is going to hurt people.

And I really wish that I would have sat on that post for longer before posting it.