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Wétiko, Jamestown styley (vs. New England)

May 2, 2013

And another thing that inevitably came up in response to the first post:





This might be the first specimen that provides evidence for cannibalism, but Owsley is pretty sure there are more to come. Percy’s letter also describes how, as president of the colony, he tortured and burned alive a man who had confessed to killing, salting and eating his pregnant wife—so the remains of this woman, along with other victims of cannibalism, may…



one day, when enough truth is unearthed in all the right yards, more people will understand why the statement “[May] God shed his grace on thee” is a threat, and why that threat is the US anthem.

Keep in mind that the Pilgrims were religious fanatics from the get-go. The reason they were being “persecuted” in England was they were pretty much trying to start a civil war so they could replace the Church of England as the state church, and they were doing THAT because they believed the CoE was too moderate. They came to America for the specific purpose of forming a church-state theocracy in which there would be zero tolerance of beliefs other than their own.

(The formatting there got fouled up at some point in reblogging, so I put attributions back in and stuck most of the OP behind a cut.)

Good point, in New England. Virginia was a whole other kettle of fish, starting out totally from a profit motive. (Public-private partnership, no less.) Lebensraum and a place to send prisoners and other undesirables away from the tiny little British Isles came later, but none of it was particularly religiously motivated further south. Beyond the usual Doctrine of Discovery excuse for trying to grab other people’s stuff. They wanted money and other resources however they could get them, and mostly didn’t even bother to try to look like they wanted to “save souls”. It was more like the Anglo-Carribean colonies that way. There were actually pretty close ties between the Chesapeake and the “British” Caribbean.

I’m actually pretty glad that the weirdo separatist Puritans got blown off course and ended up in Massachusetts instead of in the already existing Virginia colony where they were trying to go, though. (If not so glad for the people who did end up with them…) Purer greed is maybe easier to deal with in some ways than the kind of “Pilgrim” theocratic approach that assumes you’re the freaking Antichrist. (Seriously. Native people partly embodied the Antichrist.)

That’s another problem with the commonly presented founding myth: the slave-based cash cropping economy was already beginning in Virginia by the time any “Pilgrims” made it across the Atlantic. Beyond the “religious freedom” idea that gets pushed there as part of the national mythology, which really had way too much in common with the kind of theocratic nightmare some evangelicals want now in the US. As you point out. 🙂

ETA more about some history the official mythology erases:

In 1619, one year before the Mayflower landed, about 20 Africans traveling aboard a Spanish ship were captured by a privateer, either a  Dutch ship or an English ship flying a  Dutch flag. When the pirates ran out of food they stopped at Pt. Comfort, now Ft. Monroe (“Freedom’s Fort”) in Hampton, Virginia, then sailed up what is now the James River. The pirates sold the Africans into indentured servitude to Jamestown’s Governor Yeardley, who supplied them with food and water.

Knowing that he was acting against regulations forbidding trafficking with pirates, Yeardley hid the Africans away on his tobacco plantation across the Chickahominy River at Weyanoke, a few miles from where the Weyanoke Indians lived in what is now Charles City County, Virginia. “Weyanoke,” in the Algonquin-related language of the Weyanokes, meant “sassafras,” and referred to a tree commonly found in the area. The root of the sassafras tree was (and still is) used to make a deliciously aromatic tea with medicinal properties. Sassafras was the Jamestown settlers’ first cash crop, and was marketed in Europe as a cure-all.

Thus was formed, at Weyanoke, the first African community in an English-speaking colony in North America. While these were not the first Africans in the colony, they are the first now known to have lived together in a community.

I can totally understand why some people would rather erase that kind of history. But, it’s kind of late now to act embarrassed, rather than try to learn from horrible fuckery that people got up to 400 years ago. And try to do better in the future.


Going to add explicitly: neocolonialism and neoliberal policies don’t really pass for doing better.

Also, I get tired of hearing the oversimplification of “America’s Puritan heritage” used to explain any number of trends. (This seems very popular in the UK, where you’d really have to be a historian to keep all the colonial history straight…) At least as important to understanding what is still going on in the world is the heritage of unbridled exploitative greed. Not to mention the variety of other religious influences you get from stocking some colonies with an astounding assortment of nutballs you want to get rid of, but yeah.

Greed is crucial there. It’s also harder for the rest of the world to separate itself from than some weirdos trying to set up their own “New Israel” on the Massachusetts coast.

Wétiko, Jamestown styley

May 2, 2013

If You Don’t Like the Effects, Don’t Produce the Cause. (Lyrics.)

Another quickie, originally from Tumblr (which is about my level of concentration lately).  Another example of how things are unlikely to end well for our societies if we go for willful ignorance rather than learning from history:


This might be the first specimen that provides evidence for cannibalism, but Owsley is pretty sure there are more to come. Percy’s letter also describes how, as president of the colony, he tortured and burned alive a man who had confessed to killing, salting and eating his pregnant wife—so the remains of this woman, along with other victims of cannibalism, may still be waiting to be found underground. “It’s fairly convincing, now that we see this one, that this wasn’t the only case,” he says. “There are other examples mentioned here and there in the literature. So the only question is: Where are the rest of the bodies?”

This is one thing that really gets me about this BIG NEWS. It’s not like there aren’t a number of primary source accounts that this happened. Along with them just murdering each other when times got really tough, which was also treated as BIG NEWS several years back when they turned up remains with musket balls stuck in their bones.

There was also amazement at around the same time, at further evidence that people got shot for “defecting” to live in Native towns, where there were things like food and women—and, erm, a certain lack of forced labor. Also plenty of primary source evidence for this. They were all indentured to the Virginia Company starting out, besides the gentlemen investors, and could be killed for running off. See also how torturing and burning people alive was considered a fit punishment for crimes.

See also: Jamestown Settlers Were Cannibals and More Reasons the Colony Was Hell

It really is amazing they ever succeeded.

Another factor that got left out: as fairly densely populated as the Virginia coast was then, one of the major reasons nobody was living on that bit already was that there was no potable water available. Jamestown was taking its water straight out of a brackish river that gets bacterial blooms in hot weather (which there is plenty of there). Not very good survival planning, overall.

Also consistently omitted: the “Starving Time” was such a big problem, largely because they’d pissed off the locals so badly that they stopped giving them food. They had to be taught how to hunt and fish, and farming was a much lower priority than looking for gold. (Yes, the people who were supposedly attacking them nonstop for no reason tried to teach them how to get their own food. And kept taking in runaways.) They started a colony with no farmers:

The food from the Indians was critical to keeping the colony alive. No farming implements have been found at the archeological site – they relied on the Indians for food in those early years.

ETA: I didn’t say explicitly, but this power structure also meant that the indentured commoners couldn’t just say, “Sod this, I’m going to try to grow some food instead of  looking for gold that isn’t there.” /ETA

That “more reasons the colony was hell” article was not too surprising in ignoring that there were actual reasons the locals weren’t happy with those particular colonists. Act belligerent, and then expect you to keep giving them all their food in a severe drought? Ha.

To put it simply: this is the way they were behaving amongst themselves, not even toward people they were viewing as “heathen savages” and a potential source of slave labor as part of the colony’s business plan. Yeah.

Also, another disturbing thing, hinted at by the “more reasons the colony was hell” piece?

It Was Originally All Men

Three shiploads of men docked at Chesapeake Bay on April 26, 1607. Three weeks later, they had settled Jamestown, an unused bit of land the Native Americans had deemed undesirable. The next year, two brave women set foot in the colony, but then it took another 13 years for a crop of young unmarried or widowed women to arrive.

So, this starving bunch of squabbling colonists decided to eat a teenage girl, and apparently also the pregnant woman in that first quote. There were almost no British women (I’d guess Percy would have mentioned if the pregnant woman had been Native), so these fine specimens of humanity killed and ate more than one. I wouldn’t place good chances on the survival of anyone else some of these folks thought they could overpower, either.

Wétiko, anyone?!

I guess what gets me the most, overall, is the total public amazement that meets every bit of further evidence that these weren’t nice people, overall, and the society that produced them was just plain brutal in some ways. Colonial ventures do not begin in “nice” societies, and do not tend to attract “nice” people.

That is so contrary to the noble motives propaganda that still gets taught as history (maybe especially in Virginia), unless you dig some and start reading things from the people who were there. That presumed glory and grandeur pretty quickly falls flat, once you actually look past the propaganda. A lot of it’s not even “good” or really plausible propaganda, but people want to believe it.

ETA: More about the mythology, which inevitably came up elsewhere:  Wétiko, Jamestown styley (vs. New England)

Trying to get some help

April 29, 2013

I had to split this off into a separate post, going more personal than the last docsplaining one. (And then stuck it in the mothballs for several days, because uncomfortably personal.) Which may have sounded a bit harsh, but sometimes that is appropriate.

All that said, my own situation has become untenable, and I have been agonizing (ha!) about trying to find another GP and hopefully some kind of help which is actually helpful. I’ve been thinking about it for a good while now, and am still pretty well stumped as to how to make sure I get treated with some dignity and respect, while dealing with hearing/c0mmunication problems and PTSD reactions that make effective self-advocacy difficult. Mr. U is also buffaloed by health care situations, and even though I have explained to him what kind of help I think I need in order not to get bulldozed, it feels unfair to him–and I’m not totally sure he can handle doing interpretation and advocacy in a situation that also freaks him out.

My own brain fog and easily getting overloaded, from the health problems I need help with, also make speaking up for myself much more difficult. (A persistent problem when I’m sick or in pain, yeah.)

But, yeah. My coping skills are running on fumes, and my health situation is looking unlikely to improve on its own.

I’m trying to ease into eating fewer carbs, to try to manage my blood sugar without getting seriously triggered by food restriction, but that’s needing to go pretty slowly. (Probably more on that coming.) Some other appropriate treatment to get my glucose levels running lower would no doubt help me feel better overall. I’m afraid they’ll just try to put me right back on the metformin that had me barely able to go out of the house and with more malabsorption problems someone with celiac doesn’t need, because it’s the cheap first-line option. (It also didn’t lower my glucose levels, just made me very sick for the whole almost a year before I finally went off it on my own, and helped crash my health from the malabsorption.) But, maybe I can find someone who will listen better than the last “diabetes guy” GP who kept brushing off some really bad side effects and wouldn’t try me on anything else because it’s a “good drug”. Apparently making anyone who doesn’t do well on it a bad patient, yeah, and that’s not the first time I’ve run into that; my mom actually wound up in the hospital with signs of  kidney and liver failure over a couple of “good drugs” like that.

The thing that’s been hardest to deal with lately, though, is the broken sacrum. Yep, that is still a problem. It will partly heal up, then it will get reinjured and displaced in some way, but the pain is always there and makes it hard to even think straight. The relentlessness is maybe the worst part. I am just about at the end of my rope, after the last “it had several months to partly heal, then I started cramping through the hormones intended to prevent that, and it felt like a fresh fracture again!” episode. There’s always something, but it’s somehow more frustrating when your body starts ganging up on itself.

Unfortunately, sacral insufficiency fractures are often an unsuspected and undiagnosed cause of low back pain in elderly women. It was not until 1982 that they were described by a physician named Lourie.

Symptoms can include severe pain in the buttock, back, hip, groin, and/or pelvis. If the pubic ramus has fractured, there may be pain in the front of the pelvis. Walking is typically slow and painful. It can be difficult to do other necessary activities. Your back or pelvis maybe tender to touch. You may find that you have limited range of motion of your low back…

Sacroplasty may be considered in those with a severe decrease in functional ability and quality of life. It may provide faster relief of pain than typical conservative care.#

(Bolding added.) That is certainly one way of putting it. There is no comfortable position, and basically nothing you can do without disturbing a broken pelvis (including lying in bed). I have been having trouble with doing much, and hurting myself trying to do it anyway, within a seriously decreased activity level. I’ve been having trouble with things as “simple” as showering as often as I would like to, much less simple things like standing up and cooking, or going grocery shopping. (You can forget relaxing walks, much less bike rides, which is a serious quality of life problem for me and also doesn’t do much for glucose control.)  The pain itself screws with my glucose control. Luckily, my fracture does not seem to have caused any nerve impingement or damage, but it still ain’t comfy, and I am also having more trouble getting out because so many resources are taken up dealing with the pain that I get more easily overloaded.

What kind of pain are we talking about, when they consider sacroplasty?

Median activity pain scores collected from 13 patients decreased from 10 (IQR 8.5–10) pre-procedure to 6 (IQR 4–6.8) post-procedure (p<0.0001), and median rest pain scores collected from 29 patients decreased from 7 (IQR 4–8.5) to 2 (IQR 1–3.5)(p<0.0001). #


We identified six patients (five women and one man) with a mean age of 83.2 years. All six patients presented with low back pain and four also had buttock pain. The interval from pain onset to diagnosis ranged from 1 month to 1 year. All patients reported that pain onset followed a fall. The mean VAS pain score was 8.2 before sacroplasty and decreased by 7.6 points 24 hours after the procedure (with four patients having a score of 0). #


We retrospectively reviewed 63 patients treated with sacroplasty at our institution between 2004 and 2011. An 11-point numerical rating scale (NRS) pain score was recorded at rest and at activity both pre-procedure and post-procedure. The patient’s pre-procedural and post-procedural pain medication were quantified into the Medication Quantification Scale Version III (MQS III).
Mean post-procedure follow up was 3.46 weeks (st. dev.= 2.87). Mean pain at rest diminished from 6.3 pre-procedure to 2.79 (p <.0001). Mean pain with activity diminished from 9.2 to 5.23 (p <.0002). 82.2% of patients experienced a numerical or descriptive decrease of their back pain (n=49). #

Other than the last one, I think those were different 10-point pain scales. So, yeah, not inconsiderable pain levels, with quite a relief upon getting the bone stabilized. I wouldn’t even try to rate my own pain levels from this on a numerical scale–since I consistently minimize the numbers–but this does provide some validation that yes, it really hurts. Moderate pain is the the best that it gets, and “at activity” in this context can mean just gimping around your own house. Yet I still keep questioning whether I’m making a big deal out of nothing, and just looking for an excuse to be lazy and, erm, have severe brain fog and not be able to do most of the things I enjoy, and stuff like that. Because having trouble concentrating on reading in larger chunks is so fun for someone who’s hyperlexic, and so on.

To repeat, there is nothing you can do that makes it not hurt. It hurts a bit less with rest, or with narcotics (if you have access to them) to dull it a bit so that you can actually do basic stuff (or, erm, sleep) with less misery, but it always hurts.

And that’s before you throw in anything else, like dental problems or other injuries. That’s not a linear increase, either.

BTW, I am not that surprised that they were so late considering that sacral insufficiency fractures might even be a thing, much less that there might be some way of treating them beyond bedrest. (Which, as that first info sheet points out, is a really bad thing for elderly people in particular; on top of everything else, “[d]isuse osteoporosis is a serious risk”!) From what I understand, the enforced inactivity like that is also a major reason a hip fracture is such a dangerous thing for older people. The sacral insufficiency fractures are something that mainly affect older people, the vast majority of whom are women, and osteoporotic fractures in general still get misdiagnosed and not taken seriously. They don’t show up on x-rays well, and tend to cause a lot of muscle spasms to try to stabilize the fracture; they often see the spasms, and stop there.* Hell, they only recently started trying to cement up vertebral fractures (“Overall, 25% of women over the age of 65 years and 40% of women over the age of 80 years have a vertebral compression fracture.”) And a lot of those also hurt like hell, about like you’d expect from breaking something in your actual spine. (Also try moving so that doesn’t cause more pain…)

I’ve tried the conservative treatment options short of total bedrest (no can do, besides its being dangerous and causing lots of spasms from disused muscles), but by this point am afraid it will just need to be glued back together. “My butt is stuck from shooting glue”?# 😉 I would almost try sniffing the stuff if that had any chance of working, brain cells be damned. And, beyond the joys of actually going into a hospital (not even the awful local one) and having a procedure done–with anxiety attacks just thinking about it–I do not relish trying to convince someone that I really do have a (bleedingly obvi0us, from the swelling and palpable fracture line–yes, you can feel it) broken ass, when I am not elderly or anything, and that it is just not healing with conservative treatment. And that it has indeed been very, very painful and I still have not sought treatment before this. I have no reasonable expectation that the pain would be taken seriously, even with an obvious problem which is hard to miss, and which is known to cause severe pain. Based on past experience, yes.

I don’t even dare to say that I am having repetitive looping thoughts about wanting to die, which are really about wanting to get some relief from the fucking pain.

Nobody reading this needs to get concerned about my doing anything drastic, either. This kind of thing has happened before, and it’s an annoying warning sign that some change is desperately needed to make my life feel more worth living.

Not feeling like I can talk about much of this has helped add to some depression, as well. Not too surprisingly. I don’t want to add that much more stress for Mr. U, or start into what feels like endless whining online. (I also still half-expect, “Well, then, why don’t you do X? You’re just going to have to force yourself to do X, or you have no right to complain!” :-|)

A few weeks ago, I was going back through a few blogs I have only been kinda-sorta following, to see what I’d missed. And one post gave me pause.

Yep, I may have found a therapist I can actually work with, as nervous as the idea makes me based on some other past experience. And what looks like one bus ride away, iffy as public transport can be with a broken pelvis. Physically getting there is still a concern.

Sounding pretty good so far:

Want to talk about it?

If you’re sad or in a bad way, broken-hearted, feeling hopeless, beaten down, scared and confused, haunted by the past, or down in the dumps; if you’ve got the blues, or have no one around who can listen; if it’s hit you at once or there’s been a long and slow build-up; if you feel like you can’t go on, need space to work things out, can’t handle it alone, want to know who you are, need to take care of yourself, or can’t face things; if you’re struggling to get by in a world that would rather you didn’t exist; if life is blah, if you’re struggling to feel alright, if you just want to feel better, if you have more duff days than great ones, or keep making the same mistakes, and for loads of other reasons, therapy can help.

And, a further excellent indication:

I also welcome people who might need or want a therapist who won’t make a ridiculous fuss about their particular situation. This includes but is not limited to academics, activists, anarchists, bisexual people, club kids, disabled people, feminists, gay people, geeks, goths, lesbians, people in poly relationships (or who are thinking about it), people who do BDSM, people with autism and Asperger’s, people affected by HIV/AIDS, poets, punks, queer people, sex workers, trans and gender variant people, drag queens, working class people, writers, and so on…

From what I’ve read of her blogging, she seems to have her head screwed on pretty straight anyway. Before we even get to maybe actually feeling comfortable about discussing things covered by that list, I had to think of the “small” things like being able to go to an appointment comfortably dressed, with no makeup, without getting mental health concern trolled over it. (Gee, I felt a lot better about myself before you started pathologizing my not feeling like lipstick today/gaining 10 lbs./etc…) Huge difference in approach to anything I have experienced in past. Working from the assumption that yes, there are some systemic problems you may be having trouble dealing with–and, no, you’re not “crazy” for recognizing them–is an excellent start.

One of the persistent problems I have is setting goals and planning. This is probably PTSD-related; I was also never actually encouraged to set my own goals in previous experiences of counseling/therapy, which was a pretty big problem in itself. (There were plenty of others, mostly coming from its not having been voluntary, but yeah. Both distracting and too triggering to go into right now.) But, in this case, I am thinking in terms of triage, and the thing that would probably make the biggest difference to my quality of life right now is trying to get my physical health taken care of. So, I am considering trying to get some help with getting to the point of being able to try for some medical care again.

Another thing that might help there, if possible, is some practical suggestions for navigating the system. I think one of the problems with access I’ve run into is pretty simple: I’m a doctor-avoiding foreigner, living with another foreigner who has sought medical care once in the over a decade he’s been living in the UK. (His elbow must really have been hurting that time…) Things might be different if I had in-laws used to dealing with the NHS, or closer offline friends to ask about stuff, but yeah. I don’t have a great idea of how the system works, other than on paper, much less how to use that to my benefit. I had the knowledge to do that a little better back in the US, but also had a lot more help. (Even if it wasn’t always the kind of help I wanted. Ah well.)

But, just having someone else to bounce this stuff off of–who is hopefully not assuming that the entire problem consists of me and my unsavory weirdness–might be helpful. Not just with this, but definitely dealing with both trying to come up with some other coping strategies and dealing with some of the obstacles keeping me from getting basic health care. I still haven’t gotten in touch, but I am seriously considering it. And I’m fairly secure at this point that I’m a grown-ass adult who can just say “well, this isn’t working” and walk out, if it comes down to that. With similar applying in medical settings, yeah.


* Personal experience there, too. The first serious bout of what in retrospect was (then undiagnosed) celiac-related bone density problems, vitamin D deficiency, and other deficiency symptoms happened in my mid-20s, aggravated by a number of factors including meds that made me photosensitive and overheat so that I had to stay out of the sun. So, no making up for not absorbing what little D I was eating. I seriously messed up my lower back (digging a grave for a cat, actually), and the orthopedist did see a couple of obvious compression fractures on the x-rays–which, to their dubious credit, they did insist on taking before putting it all off on stress. I saw those x-rays, and they did look like the ones of compression fractures I’ve seen more recently. Since I was young, apparently healthy, and so on, the response was “Gee, I wonder why that’s looking so compressed, but it’s probably not serious. Hahaha, you can’t relax those muscles at all! Here are some muscle relaxants, and you really need to work on your stress levels!” Seriously, the guy LOLed at my back being locked in spasm for, erm, a couple of months solid; no idea what he was thinking there, nor did I really care. (ETA: At that point, it had only been going on for a couple of weeks, but that seemed past time to try to find out what was wrong.) That didn’t do much for my stress levels, I tell you what. I didn’t go back there again, even though they did also give me some Darvocet instead of just the usual NSAIDs. (Yes, that was nowhere near the only back or other musculoskeletal problem I’d run into at that point, when I was “too young”.)

It got treated as mostly a mental health problem at home, too, probably aggravated by the poor cat dying. Oh, and I was taking too many pills for something no more serious than that. Only an unusual experience in that there was  something showing up on x-rays, which promptly got dismissed. And, apparently, I need to bitch about it all these years later. 😉

“A Letter to Patients With Chronic Disease”

April 24, 2013

I seem to be on a medical roll lately. Another from Tumblr earlier, which I thought was relevant here:





This is a great article. Take a read if you’ve lost hope in doctors and it may give you a new perspective. I was researching and looking for doctors who actually have chronic illnesses but came across this.

[fibrofrog:] Thanks for posting this. I feel like I’ve had to learn many of these things on my own after putting up with countless upsetting doctors visits (like learning how to not come off too strong, establish a long term relasionship, and to only bring up a few problems at a time etc), so I think this article would be especially helpful to anyone that’s been newly diagnosed. A small part of me does still wish that I didn’t have to tip toe around my doctors feelings though, because whenever I come off as too knowledgable or as someone with too many questions then all of my problems are entirely dismissed and I end up leaving with no treatment :/

[nihlaeth:] I appreciate the honesty, he sounds like a decent doctor. But seriously, you scare doctors so you should forgive them?? I should come over less strong??? I’m not there to stroke someones fucking ego, I’m there because I have serious medical issues and they’re payed a lot to help me with that. Fear is no excuse. Human beings should treat each other decently, that goes both ways. Being a doctor does not entitle you to special treatment. And it certainly does not give you the right to treat me like less of a person. I’m sure this advice goes for the kind of doctor who wants to help but has communication issues (want a diagnosis for that?), but the majority of docs I’ve met are right-out assholes who only think about getting me out of their offices as fast as possible, often refusing to even medically examine me. I’ve been told Ehlers Danlos Syndrome is a “womens infirmity”, that I was making it up, that it was all just stress and that I should stop reading up on the internet because it was making me sick. I’ve been called crazy more times than I can count, even though everyone with the tiniest bit of interest or decency would have at least tried to confirm or dispel my story (which is actually very easy, do you want me to show you my dislocated shoulders? Just pick a joint and I’ll show it to you). If you want me to not avoid doctors, doctors should start trying to help me instead of driving me to suicide for a change.

[me] I’m sure the author meant well, but this article made me very angry with all the apologism for disrespectful behavior. In reality, yes, we do have to try to work around some harmful God complexes in order to get a bare minimum of appropriate care. Maybe from his perspective, it’s reasonable to expect this ego coddling to continue, but where’s the incentive for some of these medical professionals to act like responsible adults and, you know, not dismiss and abuse patients out of frustration and narcissism? It’s understandable that kicking people while they’re down is too common a pattern, and we should try not to make doctors want to kick us more? Depressing.

It disturbs me even more, in a way, that he probably does mean well from his own perspective, and still comes out with a bunch of not-so-subtle victim blaming. Patients get treated disrespectfully, sometimes in ways that really do harm or kill us, but we need to stop provoking it. (No matter that we still often get brushed off and told it’s “all in our head” when we do try the asskissing. And that some of us are really bad at showing the expected deference, even when we don’t have brains scrambled by being sick enough or in enough pain to need medical help in the first place.) The power dynamics couldn’t stand some change, we just need to get used to the system as it is and suck it up.

I am also bothered by the whole “doctors as a group” vs. “patients as a group” assumed dynamic here. That leads to a lot of problems, as it is, and in this case some of it borders on the old “why you hate men/white people/etc. so much?!” way to deflect real criticisms.

Interesting juxtapositions here:

2. Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease. These doctors should be avoided. But most of us are not like that; we really want to help people and try to treat them well. But we have worked very hard to earn our position; it was not bestowed by fiat or family tree. Just as you want to be listened to, so do we…
5. Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address. I can’t work that way, and I don’t think many doctors can. Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made. It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems. It helps me to prioritize with them.
6. Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you. Some docs are not cut out for chronic disease, while some of us like the long-term relationship. Don’t feel you have to put up with docs who don’t listen or minimize your problems. At the minimum, you should be able to find a doctor who doesn’t totally suck.

Because there’s never any good reason that anyone would avoid doctors, right? Poor doctors, getting all frustrated at having to do some problem-solving, and not getting treated with the expected deference all the time. Hint: I don’t think that’s the way most lack of respect shown flows, with the hierarchical setup here. Treat most people with respect, and they’ll respond in kind. If you’re not using “respect” as code for “sometimes harmful deference to authority figures”. I’ve been viewed as not showing that brand of respect by saying “I can’t take Medication X, because bad reaction in past”. Seriously.

Also, this apologetic “sure, thre are some jerks, but you can easily avoid them” totally ignores a major reason I am currently avoiding doctors: some of us are in managed care setups (or totally without insurance coverage), where we cannot easily change doctors if we’re treated badly. We also have to take whatever specialists we’re referred to—assuming we can get a referral at all—and do not always even have a right to second opinions without going private. (This HMO on steroids setup does very little to encourage decent behavior toward patients under the NHS, in my experience, but that’s another story.)

Some of us mostly have to take whatever we get. Sometimes that does more harm than good. Then we get bitched at when we do have to seek medical help again, because by that time we’re in really bad shape and, erm, really need help rather than browbeating and gaslighting as a substitute for actual medical care. Also, just because someone is unable to seek medical care, sometimes for a prolonged period of time, that does not mean that they are experiencing no significant problems, nor that they are showing no concern or responsibility for their own wellbeing.

Then there’s 7. Forgive us. Yep. If you, as an individual, treat me with respect and are honestly sorry about screwing up, that’s reasonable. As a group, with no signs of desire to fix any of the systemic problems, not so much. I could go on, but this is more than long enough already.

Talk about entitlement and lack of real understanding of the experiences of people dealing with chronic health conditions. The doctorsplaining kinda adds insult to injury, pretty literally in this case.


For a little more context here, from Sue Marsh (who has Crohn’s, of all things to psychosomatize):


Do doctors realise how dangerous this is? Do they understand that because of this constant doubt, we all wait until our head has actually fallen off before we can be dragged kicking and screaming to accident and emergency? Us sickies all know – there is only one thing worse than trying to get an out of hours doctor to see you and that’s having to do it on a bank holiday.

We wait until we can’t walk, talk or eat before we’ll go near a hospital bed. We spend weeks longer than we should convincing ourselves we’re really fine. In fact, convincing ourselves that it’s “all in our heads”

You find yourself justifying things with friends that you don’t need to explain. You doubt yourself – did you cry off your sister’s birthday because you were heaving over the sink, or did you somehow make it happen because you didn’t really want to go? Did you come into hospital for a nice rest and a few weeks away from the kids? Are you really just an attention seeking drama queen?

It never goes. Every new symptom brings a new set of challenges. Every test that comes back fine makes you wonder if this really is the time it’s “all in your head”…

“Don’t ever be one of those doctors. If you cannot find out what is wrong with a patient, you have failed, not the patient. Don’t ever blame a patient if you can’t find out what is wrong with them, blame yourself. Lazy doctors blame the patient. Good doctors listen to them.

And with that, he wafts off in a cloud of quiet importance.

Doubting your patients, judging them, labelling them, is dangerous. But most of all it’s cruel. It leaves scars deeper than any surgeon. Yet I’ve met precisely four people to talk to so far this stay and it was ALL “all in their heads.” Unlikely, isn’t it.

As an aside, I didn’t even mention the (IIRC) third item in the “letter to patients” thing, about not using the ER unless it’s absolutely necessary. (And that you should reasonably expect lousy treatment if you do need to go through the ER with a chronic condition. That is basically what he is saying.) But, yeah, I don’t actually know anybody who does that; more the “we all wait until our head has actually fallen off” pattern Sue mentions in that excellent post. And it strikes me as even nastier to add that extra doubt as to whether you really need to be going and bothering them when your head has fallen off.

I do know some uninsured people in the US who mostly have access to medical care through the ER*, with all the complaints about their tying it up with minor complaints and letting health problems get serious before they seek treatment (make up your minds, please). Also, IME, people in that situation will hold off until they’re afraid of dying or, say, losing the use of a limb before they rack up that kind of bill. But, totally different issue.


* I barely avoided it when I was back in the US, uninsured. In 2008, I had a hell of a time finding a doctor who would even see uninsured patients at all, even with the usual pay before they’ll even see you arrangement. (Luckily, we could afford office visits.) One of the hospice nurses got concerned enough by what she saw of my health situation, with what was in retrospect at least one vertebral fracture from hefting my mom around, and a bad chest infection–I wasn’t even saying anything about it, just looking in bad pain and sounding disturbingly croupy–that she called around on her own time, and found one GP two towns over who was willing to take me on as a patient. That ended up being pretty bad care, but yeah, at least he gave me some antibiotics and diabetes treatment. If that nurse hadn’t been such a caring person, I probably wouldn’t have even gotten that help. I knew better than to try to go into the ER and expect decent treatment for back pain, and I didn’t want to rack up ER-level bills over croupiness that didn’t look fatal.

I’d been uninsured before, while poor, and the situation wasn’t that bad then. Figuring out how you were going to pay for it was the big problem, not getting in the door in the first place. I feel for people in that situation now.

Hijacking “tradition” and “values”

April 21, 2013

“Thinking critically is at the heart of anybody transforming their life” – bell hooks.


I was reminded again of one thing I’ve been meaning to write more about, which keeps coming up in all kinds of contexts.

From a G+ post, a little while back:

Mari Thomas 10 Mar 2013  –  Public

Whenever i read “Traditional Values” I think of suppressing women, institutional racism, forced religious affiliations and lives relegated to living societal “norms” … and i can never see how anyone is for that..  I think my values are fairly solid.. but i cant call them traditional :P.. #justrambling

My response there:

As I’ve realized more as I’ve gotten older, my own set of values is actually rather traditional, for Tutelo-Cherokee (and more generally Native) values of “traditional”. That has more to do with egalitarianism, cooperation, and not interfering in other people’s lives, much less consciences, but yeah. Not even in the same universe as the cannibalistic social plans they’re using the term as code to cover.

I also more than occasionally get irritated at the way the paternalistic controlling blowhards get to define “traditional” for everybody, to the point that so many of us cringe at the word by now. (Not even going to start into the “family values” subset there. :-|)


Mari Thomas 10 Mar 2013<

+Rachel McCraw Yes, they have turned it into a code word.. and now that they have done that,  they can stick anything under it.. and people will automatically buy it.


Starting reading bell hooks’ Appalachian Elegy reminded me of that again today. As usual, she puts it better than I could. From the intro:

Later, attending college on the West Coast, I would come to associate the passion for freedom and the wildness I had experienced as a child with anarchy, with the belief in the power of the individual to be self-determining…

Their religion was interior and private. Mama’s mama, Baba, refused to attend church after someone made fun of the clothes she was wearing. She reminded us that God could be worshipped everyday, anywhere. No matter that they lived according to Appalachian values, they did not talk about themselves as coming from Appalachia. They did not divide Kentucky into East and West. They saw themselves as renegades and rebels, folks who did not want to be hemmed in by rules and laws, folks that wanted to remain independent. Even when circumstances forced them out of the country into the city, they were still wanting to live free…

It was not until I went away to college that I was questioned about Appalachia, about hillbilly culture, and it was always assumed by these faraway outsiders that only poor white people lived in the backwoods and in the hills. No wonder then that black folks who cherish our past, the independence that characterized our backwoods ancestors, seek to recover and restore their history, their legacy. Early on in my life I learned from those Kentucky backwoods elders, the folks whom we might now label “Appalachian,” a set of values rooted in the belief that above all else one must be self-determining. It is the foundation that is the root of my radical critical consciousness. Folks from the backwoods were certain about two things: that every human soul needed to be free and that the responsibility of being free required one to be a person of integrity, a person who lived in such a way that there would always be congruency between what one thinks, says, and does.

These ancestors had no interest in conforming to social norms and manners that made lying and cheating acceptable. More often than not, they believed themselves to be above the law whenever the rules of so-called civilized culture made no sense…

Sentimental nostalgia does not call me to remember the worlds they invented. It is just a simple fact that without their early continued support for dissident thinking and living, I would not have been able to hold my own in college and beyond when conformity promised to provide me with a sense of safety and greater regard. Their “Appalachian values,” imprinted on my consciousness as core truths I must live by, provided and continue to provide me with the tools I needed and need to survive whole in a postmodern world.

Living by those values, living with integrity, I am able to return to my native place, to an Appalachia that is no longer silent about its diversity or about the broad sweep of its influence. While I do not claim an identity as Appalachian, I do claim a solidarity, a sense of belonging, that makes me one with the Appalachian past of my ancestors: black, Native American, white, all “people of one blood” who made homeplace in isolated landscapes where they could invent themselves, where they could savor a taste of freedom.

Not as explicitly stressed in that introduction, but here:

She suggests that her own “radical critical consciousness” was learned at home in a Kentucky community of African Americans from the backwoods about the need for freedom and the responsibility that comes with freedom.

Unfortunately, “personal responsibility” is another ideologically hijacked term. I am still going to use it in a less mean-spirited sense, because it’s that important. Authoritarian jackasses don’t get to redefine all the terms. Without that kind of responsibility thrown in, we get the rugger kind of “freedom” to starve, etc.

All bolding added, BTW. My own family background is a bit different, but yeah. It sounds like we learned a lot of similar things growing up. Over the years, I’ve had to realize that my own values and general approach to the world are very much a product of time and place. Sometimes I have to get darkly amused at some assumptions about where my politics are coming from (much less some of the widgetry that gets assumed to be part of this). I’m not somehow “overcoming” my background, but rather stubbornly applying the values I learned from elders.

And I get more irritated all the time at the bossy blowhards who are trying to define “traditional” for everyone, as part of their strange set of code words. And at how often “these guys get away with it because they say Jesus a lot”, as is so excellent summed up here (you might want to read the whole post). That is still just not very compatible with the kinds of values we’re talking about here, but they still manage to push this crap a little too successfully.

See also:  Why right-wing populism works, from another blogger who seems to be approaching a lot of things with similar base assumptions.

The Republicans have also pulled off one of the greatest propaganda coups in American history, and that’s convincing working-class folks that Republican economic policies are good for the little guy. It’s really an amazing feat. Republicans have never had anything to offer working people on the economic front; they’re the party of businessmen and bankers. They are, almost by definition, the party that is against the little guy. And yet at some point in the past few decades, buoyed no doubt by their success in attracting people to their conservative social message, Republicans decided to try convincing working folks that the party of rich white bankers was on their side economically, too. And that the Democrats — the party of labor laws, unions, Social Security, and Medicare — was out to pick their pockets.

It’s goddamn amazing that they have succeeded. Really, just think about that. Take it in. Acknowledge it for the extraordinary propaganda achievement that it is. Not only did the Republicans succeed in making working people suspicious of good government, they also succeeded in deflecting traditional resentment of rich businessmen…

The Republican propagandists managed to turn that good common horse-sense upside down. They took people’s natural suspicion of The Powers That Be and re-directed it to the government. Re-directed it away from the profiteers, away from the rich white businessmen and bankers. Away from themselves.

And this is why you can now walk into one of the old mill villages in the South and find people making $11 an hour who will tell you that the Democrats are evil socialists who just want to spend our hard-earned money, and that what this country really needs is a laissez-faire free-market economy with tax breaks for corporations.

Fricking amazing.

This “traditional”, “conservative” social message they’ve used to suck people in relies just as heavily on propaganda, and on redefining terms for that purpose. It also relies on discouraging critical thinking through lousy education. Even if it takes keeping cutting funding, adding further propaganda to textbooks when necessary, and even trying to do away with the public education system. When the messages you are trying to cram down other people’s throats require enforced ignorance in order to have any chance of their not just saying “Hey, wait a minute; that makes no sense! What are you trying to pull now?!”, there’s something bad wrong with your whole plan.

I hadn’t intended to quote more bell hooks, but this ties back in a little too well (bolding added, again):

Already, the white Christian Right is targeting large populations of people of color to ensure that the fundamentalist values they want this nation to uphold and represent will determine the attitudes and values of these groups. The role Eurocentric Christianity has played in teaching non-white folks Western metaphysical dualism, the ideology that under girds binary notion of superior/inferior, good/bad, white/black, cannot be ignored. While progressive organizations are having difficulty reaching wider audiences, the white-dominated Christian Right organizes outreach programs that acknowledge diversity and have considerable influence. Just as the white-dominated Christian church in the U.S. once relied on biblical references to justify racist domination and discrimination, it now deploys a rhetoric of multiculturalism to invite non-white people to believe that racism can be overcome through a shared fundamentalist encounter. Every contemporary fundamentalist white male-dominated religious cult in the U.S. has a diverse congregation. People of color have flocked to these organizations because they have felt them to be places where racism does not exist, where they are not judged on the basis of skin color. While the white-dominated mass media focus critical attention on black religious fundamentalist groups like the Nation of Islam, and in particular Louis Farrakhan, little critique is made of white Christian fundamentalist outreach to black people and other people of color. Black Islamic fundamentalism shares with the white Christian Right support for coercive hierarchy, fascism, and a belief that some groups are inferior and others superior, along with a host of other similarities. Irrespective of the standpoint, religious fundamentalism brainwashes individuals not to think critically or see radical politicization as a means of transforming their lives. When people of color immerse themselves in religious fundamentalism, no meaningful challenge and critique of white supremacy can surface. Participation in a radical multiculturalism in any form is discouraged by religious fundamentalism.

This is part of a larger trend in godbags trying to take over all the rhetoric, and a disturbing one. Which also ties in with a draft I should maybe pull out of the mothballs soon.

Bigotry and disregard for the truth

April 20, 2013

Today, I think I’ll have to bounce off something I just reblogged with commentary a little while ago on Tumblr.

Stereotyping and accusing people in public is dangerous and not okay


Ever since people started doing this whole “internet vigilante” thing earlier in the week I’ve been really nervous and really horrified. Because while I know the people on reddit and 4chan and wherever else are not actually, like, the FBI or anything…stuff that is said in public, and propagated widely, can end up taking on a kind of “folkloric truthiness”.

It scared me a ton, for instance, when people were saying things like “this guy is not paying attention to the race, he’s looking in a different direction”. And “this guy is standing by himself”. And so on. There are just…a whole heck-ton of reasons why, in a given moment, someone might be looking away from something other people are looking at. They might be about to sneeze. They might have just gotten a text message. They might be looking at a bug on the ground. Etc.

And to publicly suggest that a person, because of what amounts to a combination of stereotyping and circumstantial “evidence”, is probably a terrorist? Is pretty horrible. It’s like…don’t people understand the gravity of doing that sort of thing? Don’t they know that they can’t take it back, once they’ve put a person’s photo and name up and once that photo and name have been passed around everywhere? Don’t they care?

As disturbing as it is, I don’t think a lot of these people even cared about truth or the possible consequences of publicly accusing others of horrible crimes based on, as you say, basically nothing besides their own imaginations. I just haven’t had the spoons and time available simultaneously yet, but I’ve been wanting to write some about (totally appalling) different degrees of similar dynamics in other situations. Unfortunately, I think Fred Clark nailed it here: False Witnesses 2 (He’s written a lot more about that, but that post is a pretty good nutshell.)

Are you afraid you might be a coward? Join us in pretending to believe this lie and you can pretend to feel brave. Are you afraid that your life is meaningless? Join us in pretending to believe this lie and you can pretend your life has purpose. Are you afraid you’re mired in mediocrity? Join us in pretending to believe this lie and you can pretend to feel exceptional. Are you worried that you won’t be able to forget that you’re just pretending and that all those good feelings will thus seem hollow and empty? Join us and we will pretend it’s true for you if you will pretend it’s true for us. We need each other.

You can’t be doing well if it seems like an improvement to base your life and your sense of self on a demonizing slander that you know is only a fantasy. To challenge that fantasy, to identify it as nothing more than that, is to threaten to send them back to whatever their lives were like before they latched onto this desperate alternative.

That seems to apply to so much dangerous xenophobic bullshit. And too nicely explains why it often doesn’t seem to matter how many facts get thrown in front of them, or how many real people get hurt. How pathetic have you got to be, as a person, to have this need to show off how much better you are, compared to racialized Others setting off bombs that kill people? 😦 Or any of the examples he uses. ETA: Or the dedicated antivaxxers, or any other gang of haters putting on this weird dangerous performance art. :/


The OP was, of course, referring to the awful behavior around the Boston Marathon bombings. A bit more on that:

WHITE OUT: Media Heap Suspicion On Brown People In Boston Marathon Bombing »

Hours after the Boston Marathon bombing, there was alreadyInternet chatter that a “Saudi national” was the suspect. Police raided the apartment of Abdulrahman Ali Alharbi, a 22-year-old student from Saudi Arabia, as he was recovering from the blasts in a Boston hospital.

Next, CNN’s John King raised the alarm about a more elusive “dark-skinned male” who the TV reporter said was in custody on Wednesday.

The following day, the New York Post got more specific. It slapped pictures of two young men on its front page, calling them “Bag Men” and identifying them as persons of interest to federal authorities. One was Salah Barhoum, 17, a Moroccan American middle-distance runner.

And then there was news that a man in Bronx, N.Y., who was born in Bangladesh was beaten up for supposedly being “a f*cking Arab” by a group of men who wanted retribution for the marathon bombing.

A Palestinian woman near Boston also reported being the victim of a hateful assault on Wednesday, when a man hit her and yelled, “F*ck you Muslims! You are terrorists! I hate you! You are involved in the Boston explosions.”

What all of these people have in common is that they’re innocent of the bombing. They also happen not to be white.

And, on the “online vigilante” with real consequences side of things, a post from empressfab:

I just want to take a moment to be really fucking angry about people being really fucking irresponsible and insensitive and awful on the internet.


This is Sunil Tripathi. He is a) a student at Brown University, b) a person of South Asian descent (his name is Hindu), and c) missing. Here is the deleted but cached page his family made to try to find him.

That page has been taken down because the fucking Sherlock Holmeses over at Reddit and on Twitter chose him as their suspect for the Boston Marathon bombings and then circulated it to the entire world as fact…

So now Hindu guys who are actually a good bit lighter than my mother are “suspicious”. I couldn’t help but be impressed again. 😐

And, as things developed:

Question – The News media for days talked about dark-skinned or brown skinned people for the Boston Bombing suspect(s). Now, that the suspects are White-Skinned people, the media is Leaving Out Color in the description. Chechens are a mixture of Russian and Arab blood, basically they look Caucasian by their physical appearance with dark hair.Why is the media not saying white-skinned suspect??

And on a not really lighter note (no pun intended, gah!), from the Onion:  Study: Majority Of Americans Not Informed Enough To Stereotype Chechens »
“Clinical trials show that most individuals will make brief, fumbling attempts to stereotype Chechens based on what little they know about Russians, but eventually drop the subject entirely after running out of anything to say within seconds.” Kinane’s team was able to confirm, however, that once research subjects were told Chechnya is a predominantly Muslim region, they were “usually pretty good to go from there.”
And the Onion doesn’t go as far OTT as one would hope. :/

This obviously isn’t just about online lynch mobs, though that was a particularly disgusting display. (I saw someone in my G+ circles apologizing for taking part earlier, but that really does not make it any better.) This has been another distressing example of just how acceptable this kind of reckless xenophobic performance art really is. Purposeful mass delusion with reckless disregard for facts too often gets the ratings, in so many contexts. And that should be alarming.

As I mentioned, this doesn’t just apply to brown “terrorists” and the ever-popular “Baby-killing Satanists”. The same kind of pattern seems to apply to most xenophobic bullshit performances. And I think it’s important to recognize that you can throw all the facts out in front of people who willingly get caught up in this crap, and it will only distract you from doing something constructive, while sucking the energy you need to do that.

No More Hoops

However, I think we need to stop and reassess what we are doing here.  Yes, conflating weight with health has been a very pervasive myth that many people have used to justify fat hatred and addressing that is important.  But I don’t think that it is going to help fat people in the long run as much as we need it to.  Because no matter how many myths and stereotypes you bust, those who hate fat people are ALWAYS going to find a way to justify their disgusting attitudes.  Be it health, fitness, appearance, the cost of mittens in America… there will always be something used to justify fat hatred.

We need to let go of constantly trying to meet the bar set by fat haters.  If they say it’s because poor health, we spend our time proving that fat does not equal poor health.  If they say it is because we’re lazy, we spend all our time proving that we are not.  If they say it is because we are gluttonous, we spend our time policing and justifying our own choices for eating.  The list goes on and on.  No matter what myth or stereotype we respond to, there will always be another.

It is time we stopped looking to ourselves to be the ones to change to fight fat hatred.  It is time we started demanding that those who hate fat people are named and shamed for what they are – ignorant bigots who sincerely believe that some people are sub-human and do not deserve to live their lives in peace and dignity.  We, as fat people who are the victims of fat hatred have absolutely no obligation at all to modify our lives or our behaviours to suit those who hate us and to justify our existence.

The difference is that I’m not sure a lot of them even really believe it. They need an outlet for hatefulness, and are looking for some kind of malicious performance art project to feed some of that into, but yeah. See also: If I Admit That ‘Hating Men’ Is a Thing, Will You Stop Turning It Into a Self-Fulfilling Prophecy?

An aside: Even if you do dislike men as a group, that’s your right as long as you’re not treating anybody like shit because of it. (Or White people, or “Christians”, or “autism parents”, or…) You are not obliged to like anyone, much less keep reassuring trolls that you’re not as goddamned hateful and bigoted as they are. I just refuse to engage anymore, because these people are not acting in good faith, but they sure do try to control what kinds of rhetoric get used. (See also: any amount of  “conservative” political hijacking of terms, and arguments as soldiers.) I’m just not playing that game.

There are an awful lot of Bad Jackies out there. And there is also a natural tendency to want to defend yourself against hateful, ignorant-sounding bullshit, under the assumption that most people care about facts and, you know, observable reality. It’s a losing proposition.

Bad Jackie cannot tolerate embarrassment, which means it is very important to her that she is never wrong — almost as important to her as pointing out when others are. Bad Jackie has got it in her head that this is where her value comes from. If she is right and others are wrong, then they are bad and she is good. So if she were to accept being wrong — even due to having been innocently deceived — then she would be bad. And she knows that deep down she has a good heart and so that can’t be true and she must be right after all. She must be.

Her identity is at stake, you see. Her self-concept and with it her self-worth. This doesn’t excuse what she does next, but it can help to understand, and to understand is always a step closer toward forgiving.

“It happened!” she insists, swatting away Dan’s phone and suggesting he’s gullible to take “some blog’s word” over her own.

There’s a moment of tension as the rest of you exchange the nervous glances you share whenever Jackie gets like this, telepathically communicating “Just drop it — you know how she is.” You can see the fight-or-flight instinct taking over in Jackie and Big Drama seems imminent.

Bad Jackie also has an unfortunate tendency to gang up with other Bad Jackies, and put on the kind of performance art discussed here in order to keep that non-embarrassed feeling going. When you have to set up somebody else as horrible in order to feel decent about yourself, there’s a bad problem. I don’t want to sound insulting or like some kind of concern troll myself, but someone made a little too good a point in comments there:

s9 • 3 years ago
The difference between Good Jackie and Bad Jackie is pretty easy to quantify: the Bad variant is exhibiting a mild, but telltale borderline personality trait, and the Good variant is not.

Now, as I mentioned in that go-to explanatory post about the way I’m using xenophobia, I did grow up with some people who showed signs of personality disorders. My grandmother was actually diagnosed with one, and my mom should have been. In both cases, it did seem to be in response to trauma, and I was actually pretty lucky not to have developed in a similar way. I’ve still had to learn better ways of approaching some things, and to feel decent about myself. I don’t like the way these things usually get framed–and further used to look down on people–but, that is the best way I know to describe certain patterns of behavior. Both of the people close to me who showed these patterns also applied/apply the scapegoating and threatened rages beyond the personal level. (Also, I may get frustrated at my uncle for starting going on about “illegal immigrants” and the like, but he learned to scapegoat at home, from a master, and seems to have trouble not doing that. Because that’s just what you do.)

What concerns me here is that so many people seem to be learning that this kind of  “Bad Jackie” pattern of behavior is both OK and expected. When it really is, on the sharper end, more usually associated with personality disorders. And, at least in some cases, I can’t help but think of some of Alice Miller’s work. Not only are these patterns of behavior a really bad example to learn from–witness my uncle–but I am afraid it may indicate some more widespread, self-perpetuating problems with our abuse/bullying culture. (Wétiko, yeah.) Widgetry gets substituted for reality, as a matter of course.  And all of this makes me less optimistic about managing real change anytime soon, because this crap does seem to be so firmly self-perpetuating, and resistant to other perspective or even facts. This last bit has been another aside, but I do find it worrying. Ugly xenophobic mob behavior keeps getting presented as “human nature” or “God’s plan”, and how are you supposed to argue with that, dealing with people who want to believe that kind of self-justifying rubbish framed in those (all too similar) terms?
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Systemic medical discrimation and abuse, pt. 2: Happening right now

April 15, 2013

In the first part, I talked some about the current public scandals in the UK, in which ridiculously high death rates finally prompted some review of horrible situations which had been allowed to continue for many years. From the end:

Just being overworked is not an adequate explanation, much less excuse, for placing such a low priority on providing very basic, often lifesaving care, to certain groups of people. Also placing low priority on staffing for, say, geriatric wards where they know they are going to need to provide more care than they would with younger, more able-bodied people (like, erm, making sure people can eat and drink) is part and parcel of the same problem. Deciding that certain kinds of people don’t deserve what limited resources are available is a very different matter. I am afraid that this is considered normal and inevitable enough not to even warrant much comment, which is disturbing in its own way.

Understaffing does not, in itself, create depraved indifference, and ”callous disregard for human life” is exactly the underlying problem here. Deciding that certain people do not deserve basic respect and dignity is the problem.

While the focus here has been on older people, I am sure that disabled people have also been getting the short end of the stick here, thanks to other people’s ideas about their worth, “usefulness” and “quality of life”. More on that, in the second part. This post has grown, and I don’t want to banish my other major focus here to the bottom of a long single post; it’s too important.

First, a little more general info on the last part, involving people with disabilities, which has also gotten some attention here (if not nearly enough!). In British parlance, “learning disabilities” here means not something like dyslexia, but what get called developmental disabilities in the US and Canada.*

NHS failing people with learning disabilities, says report  (bolding added)

People with learning disabilities are dying on average 16 years earlier than they should, because the NHS does not properly investigate and treat their physical complaints, an inquiry has found.

A confidential inquiry into deaths in the south-west, carried out by Bristol University academics and funded by the Department of Health, has revealed stark inequalities and recommends the creation of a review body to investigate and monitor learning disability deaths across the UK.

The charity Mencap estimates from the review findings that more than 1,200 children and adults die every year because they are not getting proper NHS care. More than a third (37%) are not getting the healthcare they should.

“A scandal of avoidable deaths on the scale of Mid Staffs takes place every year for people with a learning disability in the NHS. These deaths, caused by poor care and delays in diagnosis and treatment, highlight the scale of discrimination faced by disabled patients in the NHS,” said Jan Tregelles, the acting chief executive of Mencap…

“The cause of their premature deaths appears to be because the NHS is not being provided equitably to everyone based on need. People with learning disabilities are struggling to have their illnesses investigated, diagnosed and treated to the same extent as other people. These are shocking findings and must serve as a wakeup call to all of us that action is urgently required.

Mencap | Death by indifference (The report)

Learning disabled people die 16 years earlier than others, finds study (bolding added)

The inquiry also compared a subset of 58 of the 247 people against a comparator group of 58 people without learning disabilities who otherwise shared comparable characteristics. It found significantly more people with learning disabilities experienced difficulties in the diagnosis and treatment of their illness than the comparator group, and all aspects of their care provision, planning, co-ordination and documentation was less good.

It concluded people with learning disabilities were more likely to die of causes that could have been potentially addressed through good-quality healthcare, while the comparator group were more likely to die of lifestyle-related illnesses.

(The case study mentioned at the end there, of Mark Cannon, also involved our local hospital trust which came up in the first part: “A joint report by the local government and health services ombudsmen concluded his original injury was preventable, and his death could possibly have been avoided had Barking, Havering and Redbridge Hospitals NHS Trust provided appropriate care and treatment.”)

DH announces probe into premature deaths of learning disabled people

And last, but not least (and I couldn’t make up this headline): Valuing People Now ‘unrealistic’ due to lack of new funding  *hollow laughter*

About basic physical accessibility problems, but extending further and sometimes becoming outright dangerous: NHS: barriers to equal treatment | Disability Now

With the Care Quality Commission reporting inadequate levels of care with dignity in hospitals, research by Ruth Bailey indicates that disabled people in need of healthcare encounter a system largely ignorant of access needs and how they should be met

It has often struck me that disabled people are sometimes made to feel awkward or out of place in healthcare settings. This seems to have something to do with the fact that what goes on in these settings is necessarily focused on what is wrong with people. Yet when it comes to access in its broadest sense, the NHS assumes nothing is wrong. Its procedures and practices are designed for patients who are ill but non-disabled.

I couldn’t find the actual NHS-affiliated publication I was trying to find related to other barriers to accessing appropriate medical care, across a wide range of disabilities, but yeah. That also plays into the problem of neglect and abuse. If healthcare professionals are not taking actual needs and/or difficulties with communication into account, patients are going to suffer and maybe even die. Even looking at such simple things as having trouble making appointments in the first place, or letting people know you need a drink or pain relief in the hospital. BTDT personally–with good staffing levels in the hospital, harking back to the first part. You can’t say you need the help–repeatedly, if they’re busy–you’re unlikely to get it. Which is no doubt relevant in a number of the reported cases of neglecting elderly people’s basic care needs.

Also, I picked info from the UK mainly because there has been more recent research and attention. In some respects, I expect that theoretically universal access to decent medical care actually makes for better overall results than under the US system. (Yes, there are plenty of people dealing with disabilities not covered by Medicare or Medicaid. People don’t just fall through the cracks, they actively get shoved down into them.)  Having dealt with both systems, I haven’t noticed that much difference in systemic attitudes in this context.

That general lead-in is very relevant background here, plus a good way of postponing going into the more immediately harrowing stuff. *sigh*

One of my friends is currently having serious problems with a hospital in the US. She has multiple disabilities–including autism–and has been treated very badly in ways that indicate a very low regard for her safety and wellbeing. It tears me up every time I read more about it.

The thing is, she does have backup, both in person (with a friend using DPA to try to make sure she receives adequate and appropriate treatment), and from a good number of people online exerting some pressure and making the hospital aware that someone is watching how they’re behaving. This is someone who is able to write about what she is experiencing, and post this to social media. This is a disability rights activist who is aware of what her rights are.

The results still haven’t been good, and most people do not have the knowledgeable support to help keep them safer. Yes, I am very concerned about an individual I care about, but my head just keeps wanting to explode from the scope of the problem. Not to mention the number of people who are just suffering in obscurity, with nobody else really knowing or even caring in some cases.

As girljanitor put it yesterday, in response to one of the latest posts from the hospital:

Bolded: that’s the thing people don’t realize a lot of the time is that this isn’t an “isolated incident.” This is the manifestation of systematic discrimination.

I also am a survivor of medical abuse and discrimination. I’m a survivor of being treated as nonperson, crazy person, less-than-human, doesn’t count, too much trouble, liar, faker, hysterical, exaggerator, drug-seeking, it’s-all-in-my-head, and the recipient of fucked up assumptions and long-suffering sighs. I’ve had my consent or lack thereof ignored. I’ve been lied to by “medical professionals” more times than I can count.

It’s fucking unbearable. You can feel it chipping away at the most basic foundations of your humanity.


Yes, that is what finally prompted me to write about this stuff. Because it just does not get discussed enough. Partly because most people do not want to believe that this is a serious problem for some other people who are not just like them. (Or because they just don’t care; it’s hard to tell how much of what factor, at times. :-|)

The post that was in reply to: What my roommates have taught me this hospital stay.

I once attended a talk by a nurse specializing in pain. About the under-treatment of pain in people with developmental disabilities. She gave us handouts that stressed that for people with communication problems, the important thing is to have people around who know how our specific bodies respond to pain. That way they can alert the nurses when pain is out of control…

And I keep thinking I must be really tough. Because I’ve made it through all this with far less medical help than all these people passing through. I leaned hard on my friends, and on the knowledge that so many people all over the place were pushing for me. And I couldn’t be more grateful. But damn. Nobody should have to go through this. Nobody.

And disabled people are more vulnerable. Aside from the conditions they were getting surgery for, my roommates were nondisabled. Not cognitively disabled. Not developmentally disabled. Not communication impaired. Not wheelchair users. Not on feeding tubes. All of them white, of course, since nondisabled people of color can be treated as bad as white disabled people like me, let alone disabled people of color. Not lesser beings who the medical world would just as soon get rid of…

And this isn’t about jealousy. This is about my roommates getting what everyone should get and me getting what nobody should get. It’s frustrating.

I shouldn’t have to be this tough. I should have had what everyone gets. When I ask for what everyone else gets, I get told I’m holding up care that other patients need. When other patients get what everyone else gets and they worry about whether other patients are getting enough care, it’s “of course, stop worrying”.

Men dominating conversations is seen as normal. When women get exactly equal time with men, everyone perceives the women as taking up 90% of the time.

Nondisabled patients getting all the care is normal. When I ask for even a fraction of what other patients get, I’m accused of being a selfish waste of resources who is wanting so much more than other patients get.

See the similarities there? It’s not that I want any more than anyone gets. It’s that when I get even a little more than the nothing they want to give me, they treat me like I take up all their time. I’m a nuisance. I’m selfish and greedy for wanting the bare minimum. But it’s all an illusion. I’m really getting next to nothing and having to rely on my own resources to battle pain so strong it tries to destroy my mind. And it’s always like this. If I told you half of my hospital stories… they all run like this and my regular doctors know it but they can’t protect me.

Something is terribly wrong here and me, it ain’t.

The inadequate concern about, and treatment of, pain is just the most recent and pressing problem here.

First, years of ignored and misdiagnosed (multiple) medical problems lead to a dangerous situation where someone keeps getting aspiration pneumonia. That sounds pretty serious, right? Then this happened:

The weirdness of being told that the death alternative is the one I should consider. I’m including a long quote here, because WTF?!

What became really disturbing was the gastroenterologist’s attitude towards my treatment. He kept trying to find ways to persuade me that I didn’t want a feeding tube. He said I had to consider alternative options. My DPA pointed out that the current alternative option was death from pneumonia. The gastroenterologist confirmed that he knew that was the only current alternative. Then he went back to what a big scary decision a feeding tube was, and other things intended to dissuade me from what’s known both with gastroparesis and other neurological problems causing these problems, to be commonly the next course of action.I simply can’t continue aspirating like this, getting pneumonia this often is a very bad thing. I’ve had a number of close enough calls I’m not interested in getting any closer.

But apparently this guy, even after “the alternative is death” was spelled out, not only agreed to this, but still kept pushing “the alternative”. And he was not the only person who appeared to know my life was in danger yet kept asking me to reconsider getting the tube, they’ve tried all kinds of ways.

I wanted to make especial note of this because its not a case of someone making a mistake. The alternative was spelled out, he knew what it was, yet he continued to push it and try to keep me from deciding on a feeding tube. He only gave in when it was clear I had decided I wanted to live awhile longer. There’s been a lot of grudgingness.

Not everyone here has been that awful. Some of them don’t seem to see their biases. Some of them seem to be really flagrant. Some of them tell me it’s good I stick up for myself every step of the way because only I know my own body. But there’s been a disturbing parade of people trying to convince me not to do this.

They tell me it’s hard to live on a feeding tube. It’s hard to live with eating so bad you feel like throwing up when you drink three Ensures a day, too, and it’s impossible to live indefinitely with getting pneumonia over and over.

They give me crap about what’s required for the procedure and whether I’ll be able to take it.

They try to tell me that it may not work. Every procedure may not work. This is the least invasive option in this situation. Cutting my stomach out could be done too but that’s far more invasive. Getting a G-J tube is totally reversible if it doesn’t work and it doesn’t prevent me from eating food if I want.

They play up the risks. There are risks. I’ve considered them. I’ve decided they’re less risky than aspirating every week or two. But overall in this day and age the risks are minimal compared to the potential benefits.

Luckily I have a DPA who is well versed in all of the medical terminology and can argue for me when I’m lost, or for that matter just too weak and confused and vulnerable to handle these conversations. Where every single time I have to push forward against this invisible force that seems to want me killed, and say “Yes I want to live, give me the feeding tube” no matter what I’ve been told just beforehand.

And luckily some doctors have been on the side of the feeding tube since the day I walked into the ER with pneumonia and a really ugly CT scan of my lungs from a few days prior.

But there are those who aren’t. And there are those who actually seem to, given explicitly the option of me dying, want me to choose that option. And that is scary. And I think how many other people in the hospital are getting treated like this.

Other evidence of disability discrimination is simply what happened when I was admitted. They at first refused to admit me without a 24/7 escort from the local developmental disability services agency. That basically meant they were willing to admit on the basis of disability rather than on the basis of who is sick and needs treatment. There are very strange things going on here.

They must be getting calls though because they’ve become a lot more conciliatory in the past few hours. They’ve said I’m definitely getting the tube now, the same guy who tried to talk me out of it before. I don’t understand this but I think they may understand people are watching their every move. What I worry about are the ppl here without those connections to call on.

And, related to that: “Are you at peace with your decision?” (bolding added)

Before I got my feeding tube. After I’d already signed an informed consent form. A pulmonologist came into my room with a gaggle of interns and residents behind him. People who were learning from him. People who looked up to him as a teacher and role model.

He had seen my cat scan. He knew how many times I’ve had pneumonia recently. He knew it would keep happening if we didn’t find a way to stop it. He knew that pneumonia is a deadly disease and that my health was worsening with each infection. He knew how many doctors had tried to talk me out of choosing the feeding tube — choosing to live.

“Are you at peace with your decision?” Is a question I would expect to be asked repeatedly if I’d chosen to avoid treatment and go home and wait to get the infection that would kill me. Not a question that goes with choosing life. He asked me at least three times in a row.

I had a friend who came to visit from out of state, in the room with me at the time. She came because she heard I had pneumonia. Her father died of pneumonia. She was terrified for my life. She witnessed this conversation — easily, as she put it, the most genteel of the ways I’d been pressured to die.

And yet she likened it to the recommended harassment that people who choose abortion get — or for that matter, people who choose not to abort a fetus with disabilities. She said it was bullying, harassment, pressure to end my own life, no matter how genteel it looked on the outside. Who the hell gets asked repeatedly if they’re at peace with wanting to be alive? For me, choosing a feeding tube is choosing life. There were risks, there remain risks, but the risk of not getting the tube was imminent death, so, yeah. A no brainer, for me. When you choose between two risky things, you choose the one with the most possibility of survival. And feeding tubes are safer than aspiration pneumonia by far.

Are you at peace with your decision? Really? Seriously? Who asks that? Someone profoundly uncomfortable with the kind of life that requires certain kinds of technology. Someone who overtly or covertly hates disabled people.

I intend to use the life this feeding tube gives me, to ensure that no other patient in this hospital has to go through what I’ve been through. That nobody gets asked this question for choosing to live. Not even once. That doctors don’t get to try to persuade patients, especially disabled and other hated patients, that its better to reject life saving treatments. Regardless of what the doctor thinks. When I’m through with them, when the Vermont disability community is through with them, they will no longer be allowed to go there. They can stay bigots if they feel like but they won’t be allowed to express it on the job.

So, she did finally manage to get the tube. With inadequate anesthesia for the surgery, lying about what type of anesthetic was in fact going to be used, inadequate concern for the fact that it was still obviously hurting like hell during the procedure, and inadequate pain control afterward. Taking out resentments on the patient? Hmm…

After that, they honest-to-g00dness tried to throw her out of the hospital, and into a nursing home:

Her pain is not under control (and controlling it involves a complex process of titrating nausea and pain meds, something that requires a doctor on call (i.e., a hospital). They want to dump her in a nursing home (because she can’t transfer yet because of the out of control pain). Of course, nursing homes are notoriously unable to manage pain, and even if they somehow morphed into good places, they still lack the doctors needed to control her pain.

Of course the pain exists because they ignored her directions regarding anesthesia and relied on light sedation + lidocaine. Had they bothered to tell her what they were really going to do (or followed the directions she gave them), she would have informed them that she doesn’t respond very well to lidocaine. The hospital, in essence, performed an ostomy without anesthesia, and now wants to dump the aftermath of their malpractice onto a nursing home.

My response: Hell, no

Update here (since I’m stuck till 3:30 waiting for the wheelchair cab to get to FAHC): We will be filing a discharge appeal with Medicare, and I’ve gotten Protection and Advocacy involved again on this (they’re talking with their lawyers). I’ve also demanded a new attending physician.

BTW, the P&A person had witnessed the anesthesia discussion (that they then ignored altogether), which means legally FAHC is screwed. And I will be happy to help turn the damned screwdriver.

Luckily, that got stopped. (See also a recent post from another blogger: Why Are Young Adults Dying In Nursing Homes?)

But, then there was the hard pushing to do stuff with little or no regard for actual abilities or pain levels, even before the horrible PT person showed up. I’ve had two knee surgeries (both ACL reconstructions) and a seriously ripped-up ankle, and yeah. This is way too common. I’m not going to use a quote here, because I would have to quote the whole thing: Why are so many physical therapists so scary? 

OK, I do have to quote this:

And I’ve seen PTs do this to other patients. Especially disabled patients in vulnerable psychological states. They don’t understand the difference between pushing to achieve, and pushing that breaks people in body and spirit. They have no comprehension or compassion for what they do to people. They see no individual differences.

I’ve seen really good PTs. But when they are bad, they are bad like this. They are bad in ways that make me struggle so hard not to cry in front of them. I have watched hospital roommates break down crying from the utter degradation and be forced to continue anyway and showered with false praise after they have done what the PT wanted…

And they believe this. They believe disabled people are lazy and manipulative and won’t achieve anything without being pushed to the limit regardless of the costs. This is not acceptable on so many levels. She could have easily gotten me so tired I couldn’t breathe on my own — it happens — but she didn’t think of that or any other bad consequence. She thought only of the image of me in her head.

She could have helped me. She clearly knew skills I need to learn. But she didn’t. She hurt me. This isn’t ok.

Even if you’re not seen as disabled beyond a joint injury, this is too frequently a problem. I’ve run into this approach too many times, and actually done myself further injuries with the joint hypermobility in particular–just to try to get them to leave me alone when I was in no shape to deal with that kind of behavior. Part of it is no doubt bad training, but I do have to wonder.

But, yeah, in the meantime this friend has been dealing with lousy approaches to pain control, while watching the roommates who have come and gone get totally different treatment and have their problems taken more seriously.

After their surgeries, people doted on them. Even when their pain was less than mine had been, the nurses were coming in practically every five minutes to check up on them and doing every possible thing from medications to positioning, to help with their pain. Even the way they talk to them is gentle and friendly. And when they had visitors they were never thrown out, regardless of loudness. Once they even explained to a visitor that soon they were doing away with visiting hours so they wouldn’t bother throwing him out.

I still remember what my pain was like after my surgery. Worse than many more invasive surgeries I’ve had. And not controlled as well. Interacting with my existing neuropathies and other chronic pain to become even worse…

Today I tried hard not to cry because when my roommate complained of unbearable pain they treated it as an emergency and sent in doctors specializing in pain and anesthesia to make her better. Her pain, like mine, like my last roommate, is made worse by one or more tubes rubbing her incisions. I’m almost crying because of how they treated me…

It is hard to realize again and again the hate. The annoyance that you exist and need and want the same help everyone else seems to take for granted. They never wanted me here even after they saw my life was in danger, they didn’t want to save my life, and they sure as hell didn’t want to make me comfortable. A few individuals were great but the system was horrible.

It’s hard to just sit there and know that to them you don’t matter…

And this isn’t about jealousy. This is about my roommates getting what everyone should get and me getting what nobody should get. It’s frustrating.

(Bolding added.) That did get me crying, because nobody should be put through that. Everybody should matter. And she totally nails it.

A response from chavisory, which also hit a little too close to home:

Elements of this are so true about so many things in my life, including but not limited to medical care and pain control.

And I wasn’t diagnosed with an ASD until well into adulthood, or ever identified explicitly as such by medical personnel or teachers or employers, but so much of this is true in smaller, pervasive and subtle ways that I have to wonder what is it about me, that isn’t having a label or being overtly presented as disabled or unworthy, that just telegraphs to these people “acceptable to treat this way.”  Like they can just see it, even if they aren’t told to see it.

This is such a widespread problem that it can get totally overwhelming. I probably missed some parts of this particular case, trying to pull the info together, but this is more than enough awfulness to illustrate the point.

I’ve written a bit before about some of the disability-related problems I’ve had in medical settings (including very rarely getting anything like adequate pain relief for blatantly painful things). And I have reason to be concerned that if I disclose that I’m on the autistic spectrum, to try to get some accessibility needs taken into account, that might lead to worse treatment out of some dehumanizing assumptions about what that means. But, I don’t want to go into that right now, nor some of the horrible crap family members have run into which make me even more averse to trying to get medical care when I need it.

The worst medical experiences I’ve personally experienced or witnessed almost look good, compared to this extended medical clusterfuck. And this is being done to someone who has backup, with a lower chance of the bad treatment just quietly killing her and getting brushed under the rug. Like in the “how could this have ever happened?!” public scandals, yeah. This shit is all too common, and sometimes I have to wonder if the neglect and abuse are further intended to put people off seeking more treatment in the first place.

I’ve been “lucky” enough that nobody has decided that their assessment of my abilities, “quality of life”, or basic human worth were low enough that I should just go ahead and die. (People have been more prone to lying, coercion, and occasionally outright force toward procedures and treatments I said I didn’t want. Some of the same rotten attitudes around differential respect driving it, however.) Many people are not so “lucky”. And getting treated with basic respect and dignity–not to mention the assumption that you deserve help to stay alive “even if” you’re elderly and/or disabled–should never be a matter of luck. Never.

My roommate is talking about what a great hospital this is.

But every disabled person I know who’s been here has horror stories. Especially if we have had repeated or long stays. Weird. Reminds me of mental institutions where the people on three day holds for depression thought they were great and the rest of us had terrible experiences. Not that there aren’t good things about this place but its far from safe if you don’t have just the right people taking care of you and aren’t someone they value.

Shame we don’t value more people, as a society.


* Though, apparently, people on the autistic spectrum are not covered under the newer recommendations for better medical care; this poses a wider problem with getting needed help and benefits in the UK, since it’s officially neither fish nor fowl. Not a mental health problem, nor a learning disability.

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