I was in the midst of an awful whole-body migraine at the time, and ended up taking more painkillers than is technically safe to be able to attend the game. But this is the kind of thing that happens once in a lifetime, and it is one thing I firmly decided when I was a teenager in high school facing the choice between completing assignments or attending this or that social event (Prom and Grad Nite, mainly): there are times where I will sacrifice my physical wellbeing for the sake of participating in something that is important to me. I will not let my disability keep me from doing something fun, just because it is “fun” and therefore not allowed for the chronically ill (who face pressure to never, ever do anything that takes any sort of energy which is in any small way enjoyable to them — because then they are failing in their responsibilities to everyone else in the world, and seen as transgressing the dominant narrative of disability as a tragedy, something to somberly nod to one another about).

This doesn’t mean I abandon all responsibility and throw myself into every trivial thing that comes along. It means that I already have to sit out most events because of my disability, and I already have to put a disproportionate amount of energy into the basics of life, and I can’t let myself fall into that rut of always doing the more Serious and Important thing because that’s what I’m supposed to do, so yes, sometimes, I will say “fuck it,” bear the consequences, and go do that Really Fun Thing I was wanting to do, because I should not be denied participation in these things — sport games, concerts, art festivals, dinners out, parties, etc. — or shamed for daring to participate in them, just because I am disabled.

Anyway, pictures. I managed to get picturesof both Pittsburgh goals, as well as that crazy insane shift at the end of the game where Rob Scuderi stepped in front of the net and did some stand-in goaltending for the waylaid Marc-Andre Fleury. Enjoy.

The entire set

Me with Iceburgh, the Pittsburgh Penguins mascot (as posted previously here):

Inside Mellon Arena just before the game began:

Jordan Staal’s first goal:

Tyler Kennedy’s second goal:

‘nother panorama:

And the sequence of crazy man Rob Scuderi:

WE WON!!!:

The #1 Star, a.k.a. my “boyfriend” Marc-Andre Fleury:

A pano of the arena after most of the fans had gone:

And the laser logos the arena cast onto key buildings in downtown Pittsburgh:

Head over to check out the whole set.

Cara posted about it at Feministe. And we do love Cara, but the thread there (and at Hoyden About Town) quickly devolved into fail, several directions of fail in fact. I just want to walk you guys a little further in one of those directions with me.

Candace left the following comment:

As a PWD, just know that I agree with almost all of what you’ve said, Lillith. I’ve seen sooo many instances of abuse, most often of people carrying their many shopping bags out of the huge mall and then pulling out of their accessible parking space.

I understand why it is so viscerally frustrating to watch seemingly able-bodied people act totally able-bodied while also visibly taking advantage of privileges meant for disabled people. I think everybody gets that, on a deep level. But this feeling comes from many places within us, and uncomfortable though it may be to admit, most are rooted in internalized ableism.

Coldneedles responded:

I have chronic fatigue syndrome. I don’t currently need accessible parking, but I can imagine it in the future because I’ve been declining quite rapidly. I could then very well be your so called “abuser” of the system.

Want to know why?

Well, if I live by myself I will need to go shopping at some point. To do frivilous things like buying food and clothing. I will calculate that I will suffer more if I don’t carry heavy bags. because then I will need to come back and use my precious energy on more driving, walking and even getting presentable so I can go out. Once I get back from the mall I will collapse into bed and not be able to do anything for the rest on the day, possibly even the next two will be affected.

But you wouldn’t see that. Neither would you see the things I have to do to make sure I can go- resting before hand, taking medication, taking rest breaks in the mall itself.

Would it be better if I was denied an accessible parking space, merely because I can technically carry heavy bags? Even if that meant I could not go to the mall to supply my basic needs? Even if that meant public places were inaccesible to me?

Coldneedles, you are not the only one.

Before I moved out here to Pennsylvania, I spent a year living on my own in southern California, attending Cal State Fullerton in Orange County. Ultimately, that didn’t work out for me, but I put up a good fight before bowing out.

I spent my first six weeks in the dorms before being kicked out, because they provided no priority access to housing for students with disabilities or distant students (CSUF was four hours from my hometown of Visalia), with 800 bedspaces for a school of over 38,000 at the time. And then I moved to an apartment about five miles away, in Orange. I began school that year in June, and was without a car until the end of September, leaving me dependent on the public transportation system. In Orange County, that meant the buses. I’ve written about the experience before, here.

So to get food, I had to use the buses. The nearest bus stops were about a mile away from my apartment either way. Then it was a short ride down the street — about a mile — to the nearest grocery store. Then, the walk around the grocery store, and then making my way back to the bus stop — through the bus ride — and the walk back to my apartment from there — now carrying all those groceries.

My disability is, and was, invisible. I managed to make those trips for those first few months. I wouldn’t've made it as long as I did if I didn’t eventually get that car, though.

I had to make a calculation, every time: 1) how much can I reasonably carry? and 2) how often can I make this trip?

If I carried less, that made the trip easier. But it meant I was going to have to make that trip again much sooner, and overall more often. Which would end up dragging down my physical health much further. But there was a limit on how much I still could carry. And if I tried to overstuff my tired arms to keep from returning too soon, it made my condition considerably worse in the short-term and only marginally better in the long-term.

This also meant I had to buy many more processed and boxed foods, because I couldn’t get too much that could be outside the refrigerator or freezer for more than the hour or so it took me to get home (between bus connections and the walks), and because I only had so much energy to prepare food for myself when I was devoting all this energy just to buying the food and getting it home. And, of course, that meant poorer nutrition, which didn’t help my physical state much either.

It was a calculation I was destined to lose, pretty much.

So yes, you might have seen me — a tall, slim, healthy-looking 20-year-old woman with no visible deformities who walks upright with a normal gait — carrying bags of groceries and walking a considerable distance with them, including up the flight of stairs to my second-story apartment. That doesn’t mean I wasn’t disabled.

You also didn’t see me slump those bags to the floor at the doorway, with only just enough care to keep them out of the door’s way so I could slam it shut as I slumped my tired body to the floor/couch/bed, and resting a few minutes before putting away what had to be kept cold but leaving the rest for several hours later, when I had rested more and finally recovered enough to get up and move around again.

This is a calculation I go through every single day of my life. How much work do I take on, and how do I pace it?

Take today. The cats’ litter box desperately needs changed, but I don’t have any litter left. And I need new tights for a job interview tomorrow morning. So I had to go out. And I went to Wal-Mart. Because Wal-Mart had both tights and kitty litter. And it wasn’t going to do workers any better for me to drive to PetSmart and then to JC Penney or Kohls, the two choice’s I’d've had otherwise, than to get those things at Wal-Mart. So I went to fucking Wal-Mart.

And when I got there, I took a normal parking spot. And it was a fucking mistake. I do my best not to use my disabled placard unless I know that I absolutely need it, because there are never enough spaces, and I don’t know who else might come along who might need that proximity parking more than I do, and I feel guilty about it. Plus I like to avoid the glares from people when they see that young slim white chick step out of her bright red two-door with a sun roof and a spoiler on the back (which was the best car available to us in a hurry when I totaled our old beige sedan a year and a half ago) with that blue disabled placard hung from the rear view. The less I deal with that shit, the better.

So I parked about fifteen spots farther away than I would’ve parked with the disabled placard. And I got out of my car and walked in the door. And there were no carts.

I laughed about it with the couple right in front of me. They picked up a basket. I didn’t bother, because the litter wasn’t going to fit in it.

I could have walked all the way to the other end of the store to get a cart, or gone exploring the parking lot for a stray one. But that was a lot of walking I honestly did not feel I could do — so I decided I’d just get the cat litter last so I didn’t have to carry it around the store. And that was going to be a serious physical burden on me. But it was the least physical burdensome option I had available to me right then.

So I walked over to the “intimates” section in the middle of the store and grabbed a box of pantyhose, then trekked back to the side of the store I started at.

I also need some new hair stuff (which is as much a matter of comfort as it is of looks). And I know my husband hates sitting there while I look over all the different stuff that’s available and compare ingredients and compare prices and so forth. It can take me a little while. So I figured, because the hair-stuff aisle was right next to the cat-litter aisle, I would use this time to do my comparison shopping. No one else was in the aisle when I walked around the corner, and I kneeled down where the stuff I wanted to look at was, and started looking.

At that point, a middle-aged woman pushing a somewhat older woman in a wheelchair came in. And behind her, another woman pushing another woman in a wheelchair. The second said “excuse me” and I looked up, ready to straighten and move out of the way, but it turned out she was merely teasing the first couple of women, whom they apparently knew.

The assistant women (so to speak) strolled the older women down the aisle, asking “Do you prefer any certain brand?” and picking one thing up to show them, and so on. And it made me grateful that, at least for now, I can do that sort of comparison-shopping without having to ask someone else to fetch the things for me — because I know myself, and I know I’d feel too guilty and “prideful” asking for something like that. Those are the sort of situations where I throw my hands in the air and deal without — whether it’s something Really Important that is actually going to affect me quite negatively, or whether it’s looking for new hair-stuff, or whether it’s trying on clothes so I can look the way *I* want to — because that little voice in the back of my head starts repeating, “burden”… and I don’t feel like I have a right to any of those things, the minute someone else has to do anything for me to have it.

And I couldn’t help but feel guilty, in the middle of this conversation: I, the slim young girl, standing there between two boomer-age women in wheelchairs, trying my best to give them space and not get in their way — and I just wanted so much to be known as disabled, too.

I was finished perusing, for the most part, so I rounded the corner back to the cat litter and grabbed the small box — which costs me more money, but I can’t handle the giant pail, even if my husband carries it in and out for me, because it’s too heavy to lift and pour from when I’m actually doing the box. But the “small” box was still 21lbs.

And as I shoved the pantyhose under my left arm, and picked up the box of cat litter and started walking, the first couple of ladies also rounded the corner. And I had to say “excuse me” because we almost ran into each other.

And oh God: having just wanted to connect to these two women, to be recognized as disabled, too — here I am carrying a very heavy box of cat litter in my arms, without a cart or anything, right in front of them. And I thought: if I had made any mention of my disability before, what would they be thinking of me? Right now, it was just “able-bodied young girl.” But if I had, would it now be, “Faker“? “Abuser“? “Oh my God, I can’t believe she has the nerve to claim to be disabled, there she is carrying an awkwardly shaped twenty pound box with no assistance, just look at her“?

Me, a few days ago on a “good day” with my hair done and dressed up, and then today, with my hair pulled back in the first shirt and pants I picked up.

I made a beeline for the checkout lines, trying to maneuver between crowds of people without having to stop or stray too far from my path. And there was only one express checkout line open on this side of the store, and there were four people waiting in that line and nowhere to set this box down. So I went to the nearest regular line, where I could set the litter box down on the belt behind two women’s cartfulls of groceries, and stand there longer than I’d objectively have been standing in the checkout line — but without somewhere to set this box down. (Lifting from the ground is simply not feasible for me, period.)

These are the sorts of little tradeoffs people with chronic illness make all the time. I was so flushed and in so much pain at this point, standing there for five minutes longer actually hurt me considerably. But it was less hurt than I’d've sustained the other way.

So I waited, then it was my turn, and when the cashier didn’t give any indication of an intent to move the litter from the belt to the bagging area, I laughed lightly and said “Yeah, leave that there. I just couldn’t stand in the express lane holding this, I needed to set it down. There were no carts when I came in…”

Why did I feel like I had to justify myself?

So I swiped the credit card, put the bag with the pantyhose in it over my arm, took a breath and hefted the box up to my chest again. And I made a straight line toward the exit. And now, there were eight or so carts in the cart area. So I plopped my purchases down in the cart, to take out to my car. Which was about five times as far a walk (from store entrance to car) than if I’d have used that disabled spot…

And when I got to my car, of course, guess what was waiting there for me?

So: I was a seemingly healthy twenty-three-year-old who drove herself to the store, picked up that twenty pound box and carried it to the checkout line and then out the door. Can you imagine what people would say if they saw me carry that box straight to my blue-line parking spot?

I am a disabled woman. Just because you don’t see it doesn’t mean it isn’t there.

It was a great experience — I love the DC area and I was excited to go back. But five hours in a car makes for stiff muscles, and I was already dealing with some endo flareup. So I was dealing with spasms and pain even with my TENS on (here’s the trick: if you have a big bag, security doesn’t bother patting you down when you enter) and more painkillers than I should have taken.

We had nosebleed seats but whatever, they were seats. It was a great game, even though we lost. It’s hard not to enjoy an NHL playoff game. Especially being able to whisper at each other about the clueless fans behind us who had several amusing misconceptions about how the game is played. (It’s fairly doubtful that the linesmen are biased in calling off-sides. It’s one of the most objective and least arguable calls there is. But “they only ever seem to see ours!”)

Throughout the game, the people behind us kept tapping my shoulder and yelling at me for leaning forward. They “couldn’t see.” Of course, everyone else in the section was leaning forward, and I couldn’t see without doing it too. But most of all, my back was killing me, and doubling over stretches the muscles in a way that helps relieve some pain. (Ask mattw — I sleep in the same damn position.) I tried sitting back for part of the second period but couldn’t last.

After a few times of them tapping me, toward the end of the game, I turned around when they tapped again and stuttered, loudly, wide-eyed and annoyed, “I have a disability — in — back in a lot of pain –”

and they sneered and threw up their hands at me. So I turned back around.

I was steaming inside. I complained to mattw on our way out when the game was over, noting that my TENS was turned up all the way and I’d already taken way too much medicine. And when we reached the bottom of one escalator, the couple behind me tapped my shoulder and the middle-aged bearded guy said, with a smile, “They meant it nicely.”

There are several things going on here. We were wearing Penguins shirts at a Capitals game, and there’s a budding rivalry there. It’s a playoff game, and there’s the whole MVP debate going on (Malkin vs. Ovechkin), so of course it’s contentious. I severely doubt they would have bothered me if I’d been wearing red & blue rather than black & gold. So I understand it. All in good fun, in that respect. A little rivalry can make the sport more fun.

It’s a national sports game, though. At a huge arena. Some people pay attention to the game. Those people might lean left, right, forward, backward, so on. And as long as they aren’t standing up all the time, or wearing a very tall hat or something, that’s accepted, and you work around it. You lean one way or the other to get a better view. People move around as the puck moves around the ice to see better. You move too. And when things are really tense, they probably scoot closer to the edge of their seat and lean forward. So you do the same. And at the very end of the game, people often stand up. Which means you stand up too. IOW, it’s a rather ridiculous thing to complain about, no less multiple times, and angrily (not politely).

Finally, their reaction mattered. When I spilled out why I kept leaning forward, they didn’t do what I expected — look away awkwardly and quiet down as though nothing was ever said. I’m used to that. But instead, they kept gesturing and yelling at me.

That’s what’s so frustrating. It’s not respected at all. Or only respected for so long as it has to be — when you have any reason no matter how trivial to discount that person’s experience or opinion, respect goes out the window. People with disabilities are “protected” in this society only insofar as they are nonthreatening. And that protection is paternalism at its extreme. But that’s a separate issue. When they aren’t subjects of protection, they are objects of harassment.

It isn’t the worst case of harassment I’ve had related to my disabilities, but it bothered me.

“He shares our values…”

“Family values”

“American values”

“Traditional values”

If nothing else, this election season makes one thing quite clear: in a sociopolitical context, the word “values” is nothing more than a code word for “white.”

shah8 on historical trends:

One of the things that I have noticed about big F feminism, and this may not be an accurate perception, so feel free to correct me, is that there is a much lower appreciation among women that enlightenment and oppression happens in cycles. Ever greater progression in civil rights is not typically the rule, especially beyond a generation or so. I believe that the current multigenerational expansion has alot to do with industrial revolution backed by fossil fuels.

As a black person mindful of history, I am very conscious in how drastically things can change. One form of slavery, then a cotton gin based slavery, boom! emancipation, then reenslavement through penury and prison labor, then Jim Crow a bit past the high point of that, then civil rights era, and as you can see, an increase and decrease in the quality of life over the past couple of hundred years. Same with jewish people in europe, and pretty much the same with women everywheres.

The shape of the economy tends to dictate what civil rights we have. If women becomes a currency (men who can provide for the largest harem has the most status), then the system feedbacks will force women to have no rights no matter how much women and some men may protest. The only times things change is when things become untenable, or when the dominant party figures to benefit from liberalisation. It hardly ever happens otherwise.

I believe that we are in a retrenching of civil rights. I know some of you think that a defensive crouch is a bad thing, but I have absolutely no illusions about human nature. People, by and large, are truly capable of being rather monstrously evil with little prompting or social conditioning. It takes quite a bit of social conditioning, equitable societies, and empathetic teaching to make people not act in a particularly “innovative” fashion. When things of that nature is going down, due to social or economic disruption, respect for civil liberties goes down as well. I think we *should* be prepared to play defense for awhile.

Deborah Lipp on those damn lazy teenagers.

Teenagers NEED MORE SLEEP. This is totally a fucking fact. They NEED MORE SLEEP. Am I repeating myself? And school is earlier and earlier. My son’s high school day has been from 7:30 am to 2:00 pm. WTF? When I was in high school (hundreds of years ago; I rode a mammoth to school every day), it was 8:30 to 3. What VALUE is there in making them wake up an hour earlier at the time in their lives when they need more sleep than they have since kindergarten?

So they’re tired all the fucking time, and by the way, since they have very limited access to lockers (so they don’t keep drugs and guns there, I guess), and schools don’t have the budget to have extra texts in class (because, oh never mind, you know), they’re also toting a shitload of books back and forth between classes.

So my teen, on days he doesn’t exercise, is exhausted when he gets up and then totes and 20 pound (give or take, it’s fucking HEAVY) backpack to school, and totes it between classes every 45 minutes, often up or down stairs.

But he doesn’t get exercise.

Fuck you, US Government.

Nezua, with righteous anger:

“I just wanted to work a year or two, save, and then go back to my family, but it was not to be.” His case and that of a million others could simply be solved by a temporary work permit as part of our much overdue immigration reform. “The Good Lord knows I was just working and not doing anyone any harm.” This man, like many others, was in fact not guilty. “Knowingly” and “intent” are necessary elements of the charges, but most of the clients we interviewed did not

even know what a Social Security number was or what purpose it served. This worker simply had the papers filled out for him at the plant, since he could not read or write Spanish, let alone English. But the lawyer still had to advise him that pleading guilty was in his best interest. He was unable to make a decision.

“You all do and undo,” he said. “So you can do whatever you want with me.” To him we were part of the system keeping him from being deported back to his country, where his children, wife, mother, and sister depended on him. He was their sole support and did not know how they were going to make it with him in jail for 5 months. None of the “options” really mattered to him. Caught between despair and hopelessness, he just wept. He had failed his family, and was devastated. I went for some napkins, but he refused them. I offered him a cup of soda, which he superstitiously declined, saying it could be “poisoned.” His Native American spirit was broken and he could no longer think. He stared for a while at the signature page pretending to read it, although I knew he was actually praying for guidance and protection. Before he signed with a scribble, he said: “God knows you are just doing your job to support your families, and that job is to keep me from supporting mine.”

There was my conflict of interest, well put by a weeping, illiterate man.

—THE TRUE STORY OF POSTVILLE

…

One day those on the “progressive” side of things who think they can pick and choose their little causes and relegate the rest to Pet Issue Land will be stricken with a very real sense of urgency when they realize that you can’t save the tenth floor lounge without saving the lobby and service entrance, too. And that the penthouses will fall the furthest before the fire’s done.

…

And those of us who are sensible and whose bones don’t rattle with the ghost of pat buchanan’s fear know that it’s not like these people care about the damn Census. They don’t care about Xicano blogotov throwers. They don’t want to “take over” your damn corrupt land.

They just. Want. To. Eat. And. Live. Just to be able to move about, working hard for pay. They love their country and very often come here because it is the USGOV’s business and practice to squeeze every bit of profit we can and centralize it here. They don’t want to be here very often. But we shut down the open flow. USGOV is starving. USGOV is broke. USGOV is shaking in its boots…

You aren’t fooling anybody, sweetie.

It is an inspiring sentiment — something I wish were true. But this is reality, and down here, we recognize the wisdom of the old adage, actions speak louder than words.

America has always claimed to aspire to a just, egalitarian society. Then again, the bruised and broken woman presenting herself to the emergency room has always claimed to only have taken a fall.

The original immigrants from England came from an environment hostile to their religious beliefs, but don’t kid yourself: they intended to establish not a society that recognizes freedom of religious expression for people of any religious persuasion, but a society that recognized the freedom of religious expression for people who subscribed to their particular religion.

The Declaration of Independence did not recognize the fundamental rights and dignity of every person in the country’s bounds: it recognized that “All men are created equal.” Don’t kid yourself: they weren’t using that word as a gender neutral pronoun. And its founders, wealthy white men, held slaves, including black men, feeling no dissonance between their political positioning and their private lives.

Wealthy white Americans continued to hold slaves — who are we kidding? nobody held slaves; they dominated, abused, exploited slaves — for years and years after that; the “War of Northern Aggression” was fought over State’s Rights, that is, the right of states to proudly base their social and economic orders on a system of brutality against black bodies, male and female.

Even after the South was warred into submission, people of color were denied education, voting rights, property (and thus the ability to sustain oneself), bodily autonomy, and the respect and recognition of their fundamental humanity of the (white) people around them. Their welfare was purposefully neglected by the (white) people and their (white) established government. And whenever they had the temerity to advocate for themselves or even just dare to exist in public, they were harassed, attacked, raped, abused, murdered. This happened with the implicit consent of the (white) institution under which they existed.

When a noticeable portion of white America got its fucking head screwed on straight and started fighting to make right these wrongs, the violence was inflamed, and let white America not forget that legal recognition was not pushed through Congress smoothly and pleasantly. Let them also not forget that legal recognition does not translate into social recognition; to this day people of color fight to rise above the contempt their white peers have historically, and largely still currently, show them.

Native Americans were subject to nothing short of genocide from the moment the pigmentationally-challenged set foot on this massive continent. We fought them, hunted them, raped them, mutilated them, ruined their land, drove them west and then followed them there to keep the “rivalry” alive.

And make no mistake, we are equal-opportunity oppressors! We import poor, darker-skinned workers to perform our menial labor, constructing a social and economic order irreparably built upon their underpaid labor, their abuse and exploitation — their enslavement. Our history of genocide and institutionalization of people with disabilities is no secret. I’m not even going to bring up treatment of the trans/queer.

For all our boasting, the United States of America has never been a society dedicated to the respect and recognition of every person, of any class. Never.

Everyone, everyone knows what Chris Matthews means when he invokes the “regular American.” This country was FOUNDED on the privileging of the white, male, heteronormative, able-bodied default person. The Joe Six-Pack with a wife and two kids, who comes home from work every day to watch NASCAR and tosses around a football with his buddies. (Except when they privilege the multiple-vacation-home-owning, country-club-frequenting, Joe High-Class over him. But that is the only alternative.)

When someone speak about a generic American without any further context — or about a generic person without any further context — everybody knows what they visualize. And it doesn’t have tits, it doesn’t use leg braces, it doesn’t have “nappy” hair or “slanted” eyes. They may not be musing on an actual image of a white man, but if you introduced any of those other traits, it would be jarring. It would change the paradigm of thought entirely. We would suddenly be having a totally different conversation.

Everybody understands this. They may not devote any conscious thought to it — but the construct exists in their head. There is such a thing as “someone who looks like an American.” I could point out hundreds of them to you in the middle of our local Wal-Mart Super Center. I don’t think I’d find (m)any in the local mosque, assisted living facility, gay pride parade, homeless shelter…

Consider this: Mr. Obama’s own campaign recently had two women in headscarves removed from visibility in a campaign event.* How can this fit with his statement? What contortions would it require for Senator Obama to reconcile his actions with his words?

I’ll let the more experienced cover the article as a whole. But I just wanted to pick out this bit:

And as part of other anti-obesity measures, school officials should consider implementing programs to help girls build social skills, they added.

…….

*faint*

Ugh. There’s so much in this one little quote, I just can’t think of how to address it all.

There’s the fact that apparently a girl’s position on the social ladder only begins to matter to adults the moment she starts showing a little chub. No mention of the social ostracization, including the emotional harm—all the way up to and including depression and suicide—and the physical harm involved (ask my friend Mike what he faced as an unpopular child in school).

There’s the fact that, for goodness’ sake, these are children! My husband was a very chubby child, but he grew up to be 5′9, 120lbs, and plateaued at 140 when he was weightlifting. I was a chubby little girl, and grew up to be 5′8″ and 125lbs at the highest before I got on my current medication.

There’s the fact that you can’t just swoop in and “teach” a girl “social skills.” The hierarchy that exists in elementary, middle and even high school is far, far more complicated than adults give them credit for. Girls who are perfectly “skilled” socially are still ostracized. Even if a girl is a late bloomer in the social skills department, her position on the social ladder may be cemented enough that it doesn’t help her any. And popularity can be based on absolutely random shit sometimes that has not a thing to do with whether you have social skills.

There’s the fact that maybe the girl is perfectly happy with the friends she has, and doesn’t particularly want to be friends with the girls she perceives as “popular.” I knew I wasn’t high on the popularity list in high school (and I was beyond skinny, by the way), but I had no delusions that I would lead any better a life if I was. I had amazing friends and I wouldn’t have traded them for all the prep cred in the world.

And finally, to state the fucking obvious, there’s the fact that maybe, just maybe, these children are unpopular BECAUSE they are fat.

*head.* *desk.*

Update: Just wanted to add a slightly different perspective: Could it be that, besides popular girls being selected in part for their body type, they also feel such intense pressure to remain thin that they’ll do anything to keep that status? As usual, it’s a double-edged sword here.

In a recent survey of 611 chronically ill individuals, done by the National Invisible Chronic Illness Awareness Week committee, 53.27% of the respondents said that the most frustrating or annoying comment people make about their illness is “But you look so good!”

“Although telling someone they look good is often seen as a compliment,” says Lisa Copen, founder of National Invisible Chronic Illness Awareness Week “it feels like an invalidation of the physical pain or seriousness of one’s illness and the suffering they cope with daily.”

Absolutely.

This is a sore spot for many with “invisible” conditions: that is, disabilities or impairments that aren’t visible to the eye, that don’t cause outward physical deformities or leave other telltale signs. The icon of the disabled in our society is a stick figure in a wheelchair; many healthy folks don’t realize that a good many of the people milling around them, though appearing outwardly healthy, can be suffering a chronic illness that leaves them impaired or outright disabled.

These illnesses can range from diabetes to chronic fatigue syndrome to cancer to eating disorders.

And because they are invisible, they can be harder to understand. People can’t see what’s wrong with you, so they assume there isn’t anything wrong (and we’re back to that white male able-bodied heterosexual default “person” again). Even presented with evidence, many people still insist that there can’t be anything really wrong. As people who have battled depression surely find familiar, you’re expected to just get out and get some sun, go out with friends, or otherwise push through. Most of us, after all, have experienced periods of sadness, pain or fatigue, or times when we were excessively hard on ourselves over our physical appearance—and healthy people will be able to recover from these things and move on. They have little concept of living with these things every minute of every day for the rest of your life.

And of course, no one can be expected to fully understand. But there are certainly conversational landmines that even the most well-meaning and sympathetic person can inadvertently step on. “You look great!” is one of them. Naturally, everyone loves a compliment (although many, especially women, are trained to feel a need to debate or deny those comments so as not to seem unduly self-confident). But when these compliments are offered as a refutation to a person’s complaints that they are feeling down or tired or overwhelmed, it leaves a person feeling (recall that teenage angst) that they aren’t really understood.

I’ll grant that I don’t tend to mind these comments as much; they blow over me a bit more easily. But a couple more comments that the committee picked out tend to dig under my skin:

* “If you stopped thinking about it and went back to work…” (12.42%)

ARGH!

I’ve been told to “think positive” my way out of the pain countless times. I have news for these people. I thought-positived my way through my entire first nineteen years of life. Despite living with a pain processing disorder that can make carrying in a few grocery bags feel like running a marathon, I pushed my way through school on nothing but Tylenol. And then I very nearly failed out of high school because I overworked myself. I was out of school for so long that the attendance office started calling and leaving threatening messages that I needed to come back or… I would go back to school for half a day and then take off my three-days-without-a-doctor’s-note just recovering from those three and a half hours sitting in a chair, not even enough mental energy left to learn: just enough to be present.

I then pushed myself through college, thinking that if I could just keep at it I could be “normal.” After six weeks I had to drop all my classes; I was stuck in bed in too much pain to so much as microwave myself a Hot Pocket for lunch; I lived on a big pan of bread bedside until I was able to go back home. I was bedridden and then housebound for three months thereafter.

I learned to pace myself after that; I dropped down to twelve units when I was able to return to college, and then mid-semester had to drop half those just to be able to finish half my work in the remaining half. (One prof cut me slack and gave me an A based on the work that I did, the other didn’t and gave me a C- because though I did good work, I didn’t do enough work to earn the grade. I still can’t decide which approach affords me more dignity.) Then I dropped down to six units the next semester and wasn’t able to finish it out. The pain catches up to me.

Then, a year later, I started working. Ten hours a week. And after six months I had to quit. It was killing me. I couldn’t walk when I woke in the morning; it felt like daggers shooting through the floor into my feet with the slightest of weight. I was feeling the migraines coming back, and my painkiller use was shooting upward at a rate I was decidedly not comfortable with. And my bosses were jerks to boot (“I’m fifty years old, honey, I hurt too.” “…!!!! [splutter]“).

No. I can’t be normal. Even if I look like any other perfectly healthy twenty-one-year-old (albeit with somewhat darker circles under her somewhat baggier eyes). I have to pace myself. I can’t take any more than two showers a week (and showers-per-week is a good gauge of my health at the time; when it drops below one, I know I’m in trouble). I can’t get out of the house too much (the effort trying to make myself look half-presentable, even after I ditched the somewhat exacting patriarchy standards, is too much, and then I’m out of my comfort zone where I can sit, stand, lie how I need, when I need and where I need, have my medicine and a drink at hand and heating pads and pillows ever-ready). I can’t take on too many out-of-house commitments, if any, and it has to be a pretty flexible definition of “commitment” to boot. My husband works full time and I not at all, and he still does half the housework. I’ve learned to ask for help when I’m struggling instead of stubbornly insisting I can do it myself. Etc. I’ve had to accept all these things. It’s a heavy hit to your pride, trust me.

Which reminds me of the last one that bugs the shit out of me:

3. You’re so lucky to get to stay in bed all day.

Oh, honey. I’d give anything to trade you…

*(A side note: I find it frustrating that a good chunk of stories I receive on fibromyalgia are press releases, seeking to advertise a new “alternative” treatment or, in some other way, make money off those suffering. A good chunk of the rest is business stories talking about how a condition impacts corporate profits. The remainder are slice-of-life stories that often get the facts pathetically wrong. I’d say perhaps one out of every thirty or forty stories that come my way seem to approach the condition in a respectful and accurate tone. This, despite being a press release, was one of them.)