xx is not a disease

Do you menstruate?

Have you been diagnosed with anemia and been told it’s because of your sex and not an underlying medical issue?

If so, print this out and hand it to your doctor as you say these magic words: “86% of women in this study were found to be anemic due to previously undiagnosed internal bleeding. My biological sex is not a disease; and it is likely I have an undiagnosed gastrointestinal illness. Are you willing to work with me to get this solved?”

My celiac disease went undiagnosed for over 30 years because it was easier for doctors to call me weak, fragile, picky, sensitive and female than it was for them to realize I had a genetic disease (and you don’t want to know the various irresponsible, sexist and racist (long story) things medical professionals said to me when I finally got so ill I had to have a diagnosis). This medicalizing of my sex as opposed to actual attention to my health has done permanent, irreversible damage to my body.

Being female is not a disease, and anemia is generally a sign of one. If your doctor says it’s because you menstruate without further and significant investigation: get a new doctor.

Egypt

The guys I share an office with are too young to remember the fall of the Berlin Wall, so I just had to tell them to turn on Al Jazeera for a bit. There’s a lot of work left to do in Egypt, but this is a moment that it is deeply valuable to witness for many reasons, including the incredibly personal responses of many news correspondents.

the vicious middle

When I was five I was invited to a birthday party for Sandra, a girl in my kindergarten class.

At it, I recall her giving out these brightly colored, chewy, things with a sugar shell. I have no idea what they were, but they were the most satisfying things in the world to sink my teeth into. Each girl got one candy, and when she got to me, she cut one in half and gave me half.

“Because you’re half,” she said.

It’s not the first time I can recall being bullied. But it’s the first time I can recall having no recourse. (When it happened in nursery school my friend Eric and I hatched a plan that led to us slamming the perpetrating kid’s arm in a toy refrigerator and doing a lot more damage than we had intended). That lack of recourse came from three main things:

1. I had no allies.
2. I had no one below me in the hierarchy through which to define a status for myself.
3. Sandra wasn’t wrong. Or, at least, she didn’t feel wrong to me. I was younger than everyone else. And smaller. And poorer. And less pretty. And more awkward. And I could never remember my vowels in the right order.

I think of this story from time to time. It’s definitely my go-to story for the “look, I’ve never really been sure I’m okay for the world” thing that I, like most people, walk around with.

But today I thought of it because of CNN’s mention of a new study that shows the more popular a kid is the more likely they are to bully unless they are are the very top of the popularity ladder. Sounds dead-on to me. How are hierarchies determined but through enforcement? The only people who wind up not playing are those who have nothing to enforce (those at the absolute bottom) or no need to enforce (those at the absolute top).

It occurs to me that this idea of the vicious middle can be extrapolated to a lot of things outside of the classroom. I’m sure it can be extrapolated to fandom, although I’m disinclined to try to map that out because I’m pretty sure those of us who play in those sandboxes can imagine the sort of reception that would get. But I’m also sure we can extrapolate to lots of other interactions where things transpire that are, or at least involve (in a larger context and agenda) elements of, bullying.

Sexism on the Internet is one, and the stuff documented at Fat, Slutty or Ugly (a website dedicated to showing the hateful crap female gamers are dealt pretty much constantly) is a great example. Here were have a place where a dudes who feel like they’re not at the top of the social hierarchy (because nerds and gamers are just two of many subcultures that, let’s face it, still get treated like crap for some pretty arbitrary and uncool reasons) and so when women (uncommon in the community by popular belief if not actual fact) show up, those men enforce what social position they believe they do have by being abusive to the theoretical interloper women, lest the tables get turned and the nerd dudes wind up one more peg down the board.

The current congressional Republican crusade against abortion rights (sure, they dropped the whole appalling thing about what’s “real” rape, but now we have the bill that says it’s legal to let a woman die rather than provide her with emergency care if that care would harm the pregnancy should that outcome be more personally comfortable for the medical personnel involved) also feels like this to me. This is true in the structural sense of the CNN-reported study — think about these congresspeople: big fish who aren’t big enough fish, who are striving, striving, striving, to stand out enough to be somebody with a name school children are obligated to remember and study; there is so much of the worst types of ambitious in politics, and it might hurt less if I were less sympathetic to that sort of pothos.

But this type of political behavior, conducted in this way on this issue, is also like bullying in the raw emotional content output and its subsequent reception, as when Sandra told me I was half.

Because I am half.

I am half to those people in Congress, half to those gamer boys I complained about in a Sassy article in 1991, half to girls who were mean to me because if they were better than me maybe boys would be better to them.

It’s all heartbreaking.

It’s also all terrifying.

Because all of us, sometimes (most times), are in that vicious middle. And hierarchy enforcement through bullying is second nature to most of us by the time we’re five or six or seven. And for a lot of us, it’s not just about unlearning a bad and unnecessary behavior, but unlearning behaviors that often have been necessary, because they kept us alive when we didn’t, and often, couldn’t fit in.

One of the theories that has come about in reaction to the findings of CNN-reported study is that the way to end bullying isn’t by addressing bullying with those who do it or those who are targeted, but with the bystanders and witnesses, the kids who aren’t in it today, but could be on either side of that equation tomorrow.

This is the part at the end of the blog post where I tell you not to be an asshole and better yet, to speak up if you see some crap going down, but I know that 9 times out of 10 you can’t. I can’t. We can’t. It’s so hard. We don’t even know what to say. We’re scared — at work, on the Internet, at school, at home — of making ourselves a target, or rushing to the defense of someone whose company we don’t actually enjoy, or losing what little bits of status we think we’ve managed to scrape together.

But bullying isn’t a habit and a mechanism and a tool that can be overcome just by deciding not to bully and doing our best to stick with it, if we’re then silent when we witness bullying. Bullying is a social action, one that doesn’t involve two or three people, but actively includes the surrounding social community (even when the bullying transpires in secret) in order for the hierarchy enforcement to have efficacy and thus enable more bullying.

Stopping bullying effectively requires herd immunity, which I’m pretty sure means we have to keep talking about it, all the time, until all of us who were ever told we were half, have one voice.

there’s so much snow we can’t even see the trash day

Trash day is going to be kind of serious today, because I’ve got some stuff on my mind, but I hope it will keep you engaged anyway, and there’s some fun stuff too, including updates on a few older stories here towards the end of this post.

You need to be watching the Middle East right now. First, there was Tunisia. Now, there’s Egypt, which has just shut down all Internet traffic in and out of the country. There are also large protests in Yemen and additional reports of smaller protests in Libya and Lebanon.

The thing about events like these is that they tend happen very, very quickly even if the precipitating conditions are generally long-standing. If protests like this succeed in their immediate goals (i.e., regime change) that also tends happens very quickly. However, you should be careful not mistake the volume of information flying about these things for that happening-very-quickly factor. Journalists struggle with this. Audiences struggle with this, and folks like me who do media and news analysis for fun and profit (seriously, I have professional training and experience this stuff; I’m not just talking about random blogging) struggle with this. Combine that with the disparity between the nature of information flow where the events are happening and where you’re watching from, and it’s hard to know what’s going on, especially now that Egypt is effectively an Internet black-out zone; SMS and mobile service also seems to be out or on its way out, and there are additional reports of land-lines starting to go down. An hour after I first posted this I am now seeing reports of the government cutting water and electricity throughout multiple cities.

Next, LGBT people are still being murdered in Uganda, whether that “Kill the Gays” bill goes through or not. And part of the reason they’re being murdered? US religious activists who, unable to engage their agenda fully in the US, went to Africa to see what they could do there instead. When I wrote about this on my LJ, one of my fandom friends linked me to a fund that supports an LGBT-inclusive church in Uganda that’s run by a Ugandan minister. If you have other suggestions for how people not in Uganda can help address this mess, please leave a comment.

Now that we’ve gotten that stuff out of the way, it’s worth noting that I don’t think of myself as a political or activist blogger, even though I certainly blog about both to varying degrees here and on LJ. But I do think that Sady Doyle has a lot of interesting things to say about the realm of nasty reactions from readers at her Tumblr. I don’t get quite the same types of hate as Doyle does, and I very much suspect I get it from a different audience (although that may have more to do with my origins on LJ, which has a different male/female ratio than some other spaces on the Internet, than anything I actually do or write about), but Doyle nails some trends in nastygrams directed at female-types on the Internet with this:

… I generally think it’s the same for every woman who receives a massive amount of blowback. Either you seem too sure of your own worthiness as a person, or you seem too sure of your opinions; either way, something has gone wrong, because you don’t hate yourself, and we need to fix that for you.

I think anything I have to add to that is probably superfluous today.

Okay, fun things!

It wouldn’t be trash day without linking to something on Kickstarter. This project is already fully funded, but there’s still time to get in on it and get your very own math dice, which I personally think should be a featured element in any sort of Doctor Who table-top role-playing game ever.

And, speaking of Doctor Who, as we do around here: Ride-in Daleks!. Kids only, and alas, I have no kids to put inside Daleks. Maybe the cats though…. would that be wrong?

And we have some updates on some previous stories:

I’m going to get to eat cups! But yet on a more serious, and continuingly relevant, note there was a slight bit of dramarama in comments on that project over on Kickstarter as the deadline neared. Someone showed up to say that the people running the project were bad people, provided no details, and offered an analogy that may or may not have had direct relevance to whatever accusations they were trying to make. I don’t know the Jelloware people, and I don’t know the person speaking out. But I do know if you’re going to say, “Hey, you shouldn’t support these people” you need to say why. And if you don’t? I’m going to refer you back up to the previously quoted remarks from Sady Doyle.

Next, it looks like the Internet stepped-up and Teresa Jusino will be joining us in LA for the Whedonistas launch!

Finally, for those of you following the hawkward situation at the Library of Congress, the bird has been rescued.

still worried about lunchroom hierarchies after all these years

“You always feel like you are in the wrong place at Davos,
like there is some better meeting going on somewhere
in one of the hotels that you really ought to be at.
Like the real Davos is happening in secret somewhere.”

– Steve Case, founder of AOL

It’s World Economic Forum time again, which means it’s time for the above quote from Steve Case, which I love oh so much. I’ve seen the quote mentioned a lot this year (although it’s from last year, if not earlier) in criticisms of the Davos event, but even without having ever been to Davos, I’ve never really felt like that was the point. Case isn’t complaining about the WEF event. Case is talking about the absurdity of human nature.

I’ve written about this before, in the context of telling you there really is no secret awesome party that you’re missing. I mean, there may be something you’re not invited to or don’t know about that’s all A-list and aspirational in your head, but really, it’s probably just the same as the party you’re at. Same social behaviors, same insecurities, same level of joy and fun and not.

The other thing Case’s quote tells us, though, isn’t just that this feeling never goes away – we are all in junior high forever – but that this feeling may actually get more intense the more successful, the more near the epicenter of supposed cool, we are.

It’s like how you can halve something infinitely, but it will never really be gone. Success is like that in one direction — how sure is anyone of where the top of the mountain is? And insecurity is like that in the other — none of us ever get to be free from all shreds of it all the time.

Currently, I’m in the place I’m often in, in the month before Gallifrey One, a Doctor Who convention in Los Angeles. I’m excited, and I’m full of dread. The Whedonistas launch is rad, and I’ll get to see some friends I only get to see out there, and I have some business to attend to in LA proper (and some non-business, in the form of ElecTRONica, because I am a big screaming nerd).

But I’m also worried I won’t be cool because I’m probably not cosplaying much if at all this year (although Christian’s been informed he can bribe me into my Captain Jack duds with a pin he’s threatening to make up that’s both snarky and zen on the subject of our dear, departed Ianto Jones), am not really doing panels this go ’round, and will be away from the hotel during the event far more than I usually am (it’s not just about In-and-Out Burger anymore!). I’m also worried that — well, I could enumerate it further, but why, when it’s actually so simple? I’m worried I won’t be invited to sit at the cool kids table.

Which gets us back to Steve Case and his comments about Davos. At an event teaming with celebrities, world leaders, and the best of the best in business all in easy arms reach, Steve Case worries about not being cool enough to mingle with the people he’s already mingling with. In regard to a con that’s largely about not creating hierarchy between guests and fans, in a fandom that is known for very significant levels of fan/creator overlap (guess how many current DW writers wrote for DW fanzines in the ’80s) and genuine friendships developing over these supposed lines of demarcation and reverence, I am, apparently, worried about the con not being exactly what it is? I’m worried about me not doing what I’ve always gone there and experienced? I’m worried about not networking with people I want to chat and network with precisely because I’m chatting and networking with those people? What? Time for me to stop being Steve Case.

Because seriously, being Steve Case — normally a pretty good, if slightly weird, aspirational blueprint. Not the guy I would choose as a role model, but I get it certainly. But Steve Case re: Davos? Maybe not so much, although I’m certainly feeling his pain on this one.

Look, the cool party generally isn’t that interesting (or at least not any more interesting than where you are instead). It’s probably happening right where you are, and that’s not just feel good rhetoric. But even if I’m wrong, whatever you do, don’t use the fact that you are having an experience to suddenly become fearful that, that somehow means you’re not having that experience. Because that? Doesn’t make a lot of sense. It also tends to lead to highly tortured sentences.

Meanwhile, I? Cannot wait to get to L.A. It’s snowing here. Again.

when getting healthy means knowing you’re sick

I have celiac disease (note, it’s not Celiac disease or celiac’s disease — it’s not named after a person named Celiac), which is both a big pain in the ass and not a big deal. While it increases my risk of all sorts of illnesses (like epilepsy and various sorts of cancers), it probably won’t kill me. And, as long as I don’t eat anything that contains gluten or has come into contact with it, I feel fine. Living in New York City and in an increasingly gluten-aware society means this not eating gluten thing is pretty easy: I know where to get gluten-free cupcakes (I’ve at least three choices here), gluten-free pizza (six choices not including frozen) and most everything else I could want. Even many of the goodies at my local Costco are labeled gluten-free.

The problem is, that right now, I’m pretty sure I’m eating something that isn’t, because I feel like crap in a very particular way. This is frustrating, not just because I feel like crap, and not just because I’ve been known to yell at other celiacs for thinking every stomach upset they experience is about gluten (maybe you shouldn’t have eaten an entire batch of brownies made with bean flour (I’ve done this; and no matter how good they taste, it’s a bad intestinal choice); or maybe you have a stomach bug; or some other as yet to be diagnosed intolerance — making me a big giant hypocrite as I attempt to figure out where the secret gluten that must be responsible for my current suffering lives), but because I did a big grocery run the other day, and everything I bought was explicitly gluten-free.

Unfortunately, this is no guarantee. There’s been lots of scandals with stuff being labeled gluten-free that wasn’t, either because of poor production practices or outright lies. I’ve had to swear off gluten-free dinosaur-shaped chicken nuggets for this reason (trivial to you, but devastating to me); and it’s made me double and triple-check packages when stuff has a better texture than I expect, but even labeling is no guarantee.

But gluten-paranoia is sure a lot more pleasant than the possibility that I have some weird unrelated sensitivity to the sun-dried tomatoes in the gluten-free turkey meatballs I bought the other day; the coloring in some gluten-free not-entirely-natural fruit snacks; or the sunflower oil the awesome chips-made-out-of-popcorn are prepared in (and to be frank, I’ve had my suspicions about sunflower oil and me for a while).

Celiac disease doesn’t suck because of the restrictions; the symptoms when you or someone else screws up; or even its ugly metaphorical griefs (I cannot break bread with you). It sucks because of the paranoia — of what other diseases it might give me, and of food, good intentions, and honest labeling. It’s completely exhausting in the way it has forced me to view the world as suspect. Sometimes it seems like everyone, and everything is made of poison; I can’t kiss my girlfriend after she eats a cupcake; I can’t just grab her shampoo in the shower because what it contains oatmeal (gluten-contact issues and issues involving oats vary from celiac to celiac, but that’s a long footnote I don’t feel like explaining right now).

Celiac disease is also completely exhausting in the way it has caused other people to view me as suspect. I am not, for example, a picky eater because I have to know what’s in my food. Nor do I, despite not being Catholic, have much tolerance for the way celiac disease designates the state of my soul as in dire need of scrutiny because of my inability to take some hypothetical-to-me communion. I am also not trying to get attention (a desire for which I, quite obviously, have other courses of action). Nor am I on a diet (as I have to keep explaining to waitstaff when I order a hamburger without the bun and they don’t bring me the fries either!). Nor do I have an eating disorder (thanks, medical professionals who have interpreted symptoms of my disease as such). Nor I am I rejecting your hospitality. Nor am I making crap up to make your day hard.

Believe me, if I wanted to make your day hard, I have many more exciting ways of doing it than not eating bread — which, by the way, I still dream about in detailed nightmares that involve my either being forced to poison myself or my forgetting that I am.

Celiac disease is a big hassle and serious business. With attention to detail and respect from others, it’s also easy to manage. I don’t consider it a disability, except on the days that I have to, because something’s gone wrong and I can’t do what seems like normal life stuff to most other people (get out of bed, not be in pain, think straight, not have weird phantom tingling on my skin, or cope with typical external stimuli like street noise, bright lights, etc.).

There’s nothing I did to make this happen to me. And there’s nothing about it that makes me lucky other than it’s thankfully not something with more serious consequences or something that’s even harder to manage than it already is.

I have no problem with people consuming gluten around me (although keep your crumbs out of my butter or I get fiesty in the bad way), and your apologies are not necessary. All I ask is that you have tolerance when I sometimes, like now, lose my patience with this thing and have to complain or can’t keep my eyes focused on you in a conversation or forget words or can’t leave the house or can’t make myself look attractive because my nutritional uptake is abnormal again. Some days I have no right to the spoon metaphor; sometimes “spoon metaphor” is all I can say to explain to you how bad it is.

Celiac disease is the explanation for decades of emotional and physical misery I experienced without more concern than “she’s just like that.” I’m still just like that. There’s nothing I can do about it, and there’s nothing you can do about it. But if I can have a sense of humor, or at least ambivalence, about my condition eight days out of ten, all I can ask is you do the same.

Patty, who is awesome about this (it’s hard to move in with someone with celiac disease when you are as made of pasta as she is), often has to remind me to eat, because I’m one of those people who gets distracted and hyperfocused and forgets to eat when I’m deep in project mode. But sometimes the simple truth is I just don’t want to deal with dinner being a detective novel.

What can you do to be nice to celiacs or at least me? Know what’s in the food you serve. Ask if a menu or type of cuisine is okay before choosing a restaurant. Never assume our food choices are about our weight or that our weight is about any sort of choice at all (celiacs come in all sizes; but most of us, regardless of size, are at a weight impacted by our experience of the disease); don’t get annoyed when we can’t have something you want to give us — we’re always more annoyed than you! And for heaven’s sake, if you don’t want to hear about bodily functions and internal bleeding, don’t ask us about the primary symptoms.

Celiac disease is kind of a weird experience in that there is no cure. For people like me, getting healthy means just finding out that you’re sick. Just because that’s a blessing most days, doesn’t mean we always know how to be happy about it.

the story of two dogs

I’m afraid of dogs. Nearly always have been, although I don’t really know why. We had one when I was a baby, apparently (the neighbors poisoned it, but that’s another story), and I never had a bad experience with one until I was in my 20s when a misunderstanding between myself, a friend’s St. Bernard and an obnoxious neighborhood stray led to a really scary situation that I still have a few small scars from.

But I feel bad about my thing with dogs. It’s not the fault of dogs. Dogs are just doing what they know how to do. And because I’m jumpy around them, I weird them out. In general I don’t think your dog is a bad dog; I just think it’s better for your dog and for me if we don’t have too much contact (an on-leash dogs who follows commands, I can handle and warm up to and can eventually be around in a chill, non-leash way).

Unfortunately, I’ve also been made to feel bad about my thing about dogs in some really toxic ways, and I will probably regret for the rest of my life the moment I did not get out of the car when, after discussing my fear of dogs, the man I was with said to me, “You act like you were raped by a dog.” Uncalled for doesn’t begin to cover it.

But here’s the thing. Dogs seem pretty cool. I kinda wish I could deal with them. They’re smart. They are loyal. They’re warm. They do amazing work as service animals. There are even bed-bug and gluten-detection dogs! Dogs are rad, and people should be nice to them.

Unfortunately, two terrible dog stories have come out of New York City recently, although both stories have also shown human excellence in the end. They’re both about pit bulls, and you’d think that as someone who is scared of dogs, I’d be really, really, not okay with pit bulls.

Actually, I love pit bulls, and I want to take a moment to speak in defense of the breed. My old landlord had a pit named Tyrone. Tyrone was awesome. He used to come to the parties I had at my flat. Once he accidentally lapped beer up off the floor; that was bad. He’d try to play with my cats, who would swipe at him, and then he’d go whimper in the corner. He had a really big skull, and a friend once said he was like a lion. But the best thing about Tyrone was that he knew I was a little scared of him and tried to make it better.

Everyone else Tyrone knew he’d run up to and jump up on in greeting. Me? He’d run up to and then skid to a stop and then look at me meaningfully as he made an exaggerated show of sitting and waiting for me to pet him. Tyrone was a gentleman dog. Totally awesome. Pit bulls are cool and smart.

Which is why I am so sad about two stories of dogs left out in the cold here in the city.

First there was the dog found already dead in a trash bag during a snowstorm. He was nicknamed Frosty by the person who found him and tried to make sure he had some dignity in his passing. Frosty, I salute you.

Then there was the dog someone chained to a bridge and left out to die in the same storm. She, luckily, got rescued. But she needs a home, and re-homing pit bulls because of their image problems is really hard. So, I hope someone out there can help her.

Dogs and me? Not so good. But I’m rooting for them anyway.

PSAs

While I have a growing list of slightly odd things in my head (e.g., the liminal world and Severus Snape’s birthday) I want to share thinky thoughts with you about, that’s not going to happen today.

What is going to happen today is a couple of PSAs:

Item 1: Know the warning signs of stroke and TAKE THEM SERIOUSLY.
Strokes have affected my friends, acquaintances and family. Taking 30 seconds to read this information could save a life. And really? There’s no harm in refamiliarizing yourself if you already know this stuff. Because no one wants to call 911 and because the adrenalin gets going in these situations, it can be a whole lot harder to act in this situations than you ever would have expected. The more you know this stuff, the more prepared you are.

Item 2: Australia is underwater. Well, not all of it. But a lot of it. 75% of Queensland has been declared a disaster zone; Brisbane is in acute crisis and flood watches are in effect for Victoria, South Australia and New South Wales. If you don’t know Austraila, one of the things you should know is that there’s a lot of land between settled areas in some places: lots of towns are cut off. Things are really bad and no one knows how bad in many cases. Power has had to be cut in many places because it’s too dangerous to have electricity with the level of flooding. The most severely affected areas are not in the parts of the country I’ve been to, but Australia is a place I really love, so aside from the “helping people is good” factor, I would particularly appreciate it if you can donate or spread the word on this one.