After the recent post on Stigma, discrimination, and NIMBYism in my backyard, I’ve meant to expand some on the differences I’ve seen in stigma and discrimination levels. But, it’s been a busy couple of days, and I haven’t had much uninterrupted time alone to write. Nigel is gone this evening, so there are fewer distractions other than the dog keeping trying to put his head and front legs in my lap.

To recap, from the previous post:

Stigma is hardly gone in the U.S., but I was appalled after I moved to Greater London with a bipolar diagnosis. My first GP found me scary, jumped to book a psych consultation I didn’t want nor need, and gave me piss-poor medical care. When I tried to donate blood, I was on medications, but they were not the problem per se; I was informed that the National Blood Service had to assume that anyone diagnosed with a mental illness was incapable of consenting to give blood–and the nurse telling me this acted as though I might flip out and attack her. Seriously. (I was told that this was supposed to change soon–in 2004–but I just haven’t wanted to risk getting humiliated while try to give them my O neg again! ) I’ve seen other people with apparent mental health problems get treated as if they had the plague.

I grew up in Virginia, and the way things work in the U.S. certainly carries plenty of its own problems. After entering the psych system in the late ’80s, at 13, I ran into some shoddy treatment and dismissal of real health problems, which I’ve written some about here. I got locked up three times when I had autie overload meltdowns as a teenager; talk about dehumanizing treatment, low on any desire to understand what was driving my “weird” behavior.

I was still appalled at some of the attitudes and treatment I ran into after moving to the U.K., once people found out I was carrying a bipolar diagnosis.

Before I told them this, I usually seemed to pass for rather eccentric but nice enough; pretty much what I’d been used to. (I even seem to get an extra eccentricity pass, being acceptably foreign–i.e., a not-so-brown native English speaker–and all.) When I told people about the diagnosis, the change was astounding. You’d have thought I had matter-of-factly admitted that I enjoyed sexually abusing children and small animals before I went to shoot up speedballs. Worst of all, they couldn’t tell until I mentioned it. I did not have horns, nor fangs dripping blood, so I must also be “normal” like them.*

One of the worst bits about this reaction? Most of the people I considered to have any legitimate need to know were medical personnel. I’ve had other problems dismissed as signs of depression and anxiety in past, but had never run into an obvious fear reaction before in a medical setting.

Both that Blood Service nurse and a GYN I saw were fine when they assumed the anticonvulsant I was taking (topiramate) was for epilepsy, but both started acting both far more condescending and afraid I might attack them when I said it was a mood stabilizer. The GYN, bizarrely, acted as though that were proof I was crazy, so I couldn’t be trusted to know whether I was also having seizures that required the topiramate (?!).** That GP just treated me like some kind of dangerous, crazy barbarian in general; xenophobia and crappy attitudes toward people with mental health diagnoses are hardly becoming in a doctor practising on Planet Earth, dealing with actual humans. I did not get proper medical treatment from any of these folks, they were so startled and full of preconceptions.

In all these cases, I do believe in retrospect that my matter-of-fact attitude scared them more; I did not know I was supposed to act ashamed of something I’d been led to believe I had no control over, and which was medically relevant. I didn’t display my own personal stigma as they would have expected and found fitting. I guess that’s another way to be uppity, and that makes a lot of people hostile and afraid. Who’s acting crazy here?

To my mind, they were setting up an unexpected “don’t ask, don’t tell” policy. Why in the world would I want to tell them, if I am likely to get instantly transformed into some sort of stupid ogre in the other person’s mind? Why would I want to play that game at all, if I can “pass” just by not saying anything? I’ve got enough to deal with already. Then I get frustrated and angry that this approach seems necessary. Nobody should have to “pass” for anything in order to be treated like a full human being who deserves dignity and respect.

Not entirely to my credit, that sort of thing made me even more glad to find out that being on the autistic spectrum, and having learned piss-poor emotional regulation, much better describes the difficulties I have faced. “Autistic” just describes the way I’m made; now I could learn how to deal with the challenges that poses, living in a society set up for people made differently–not to mention finding out I could work on developing better emotional regulation. (Both have helped immensely, BTW!) I am just not interested in getting further labelled and pathologized, and some (mostly non-autistic, IME) people would look down on me because of that. Also see Philip Dawdy’s “Once Diagnosed, Never Undiagnosed”; the whole thing strikes me as a mug’s game by now, and I’m just not playing if I can help it. Lots of people get hurt by this game, as I have experienced firsthand.

These experiences and more also added a couple of extra layers of medical-related PTSD, so I am more hesitant to seek medical treatment for straightforwardly physical problems. When I do seek treatment, I am even more prone to minimize the difficulties and pain, with the very different standards of “out of control”, and how differently a person’s behavior can be interpreted based on prejudice. I have been avoiding going back for diabetes treatment, much less treatment for the chronic pain, even though I do not have a psychiatric label on file at my current GP’s. I may not want to be labelled, but I still don’t act and react as expected, the way my nervous system is wired. I have been shown ample reason not to expect to be treated like a real human.

Back to perceptions of stigma and discrimination in different places. Why are things not quite so bad in this respect in the U.S. now, particularly dealing with medical professionals? A huge percentage of Americans are deemed to have some form of Broke Brain Syndrome, and are on psychiatric medications. This is troublesome in its own cluster of ways, but doctors are used to seeing people diagnosed bipolar and what have you. The one you’re seeing writes a lot of prescriptions for it, most likely. Everyone knows at least one friend or family member who is taking psych medications, and has heard the “like insulin for a diabetic” analogy ad nauseam. Some people are still jerks about it, but those attitudes seem slightly different. It’s hard to get as scared if a quarter or a third of the people you know are at least on antidepressants. Depressed and anxious, even bipolar (gasp!) people, are not that scary anymore.

This still does not apply to schizophrenics or anyone else with psychotic symptoms, oh my no. They’re still just batshit crazy and possibly dangerous. Big Pharma has further to go with that one; they don’t seem as interested, though, since they can flog atypical antipsychotics at pretty much everyone else now. It’s harder to “pass”, in a lot of cases. Tardive dyskinesia or other obvious “crazy looking” movement disorders from neuroleptic medications will get you treated like a leper about anywhere; talk about visible stigma! Other people waiting for the bus honest-to-goodness edged away from me here, after they saw me talking to a “crazy looking” woman with obvious TD. Yep, it’s contagious. I narrowly avoided yelling at a couple of them, I got so worked up because it was so disgustingly out of line. Trying to shame the ones who should have been ashamed wouldn’t have helped.

I have serious problems with the severely disempowering approach that your brain is broken and there’s nothing you can do but take meds forever; in fact, it’s the only vaguely responsible thing to do, and any reluctance to do so–or any “of course I’m depressed, I have a shitty job and get no help at home!” insights– must be a sign of your illness. It’s just plain wrong to force people to look for Balance in a Bottle, for what is perceived as their own good or otherwise; I have experienced this, and it’s no different depending on how the diagnosis matches up with reality, nor what the diagnosis is in the first place. Coercion is wrong.

Combining Broke Brain Syndrome dogma (and make no mistake, it has very little to do with critical thinking) with an already strange combo of fear, loathing, and bootstrap ideology makes for an even worse situation. That’s what I’ve seen more of in the U.K.

As another anecdotal example, there’s our former upstairs neighbor M., a caring older lady who tried to adopt Nigel and me after I moved in. M. lived alone but for her little dog, and obviously needed someone to talk to. Her daughter lives nearby, and she spent a decent bit of time with the daughter’s family, but I got the impression that they just did not understand the troubles she was having. She was part of the 24% of mentally ill people in the UK who do work, part time as a cook at a retirement home. She and my mom got along marvelously when my parents were visiting, and they talked quite a bit. M. had a history of depression and anxiety, and had been hospitalized for it the year before; she was relieved that my mom was so matter-of-fact talking about her own depression and mine, and opened up to both of us about it. She was obviously expecting hideous reactions and discrimination if she talked about it, and just didn’t seem to have anybody who understood that she could talk about it with.

This was plain old depression and anxiety. M. is/was a very bright, interesting, and kind lady–and impressively marginalized.

I also have no idea where she is now, and have felt sad and wondered what more I could have done to help for a couple of years now. One afternoon, the cops came by and asked if we’d seen her lately; I hadn’t in several days, and hadn’t thought much about it. We haven’t seen hide nor hair of her since. I can only hope that she got hospitalized again and went to stay with her daughter afterward, rather than managed to kill herself. It’s a shame she did not have more support.

How easily can people recover, and make a decent and authentic life for themselves, in either kind of situation?

_____________

* I’ve run into similar, if less severe, reactions from a few when they found out I’m a pale multiracial person, rather than a “normal” person; that category may be unsavory to some, but just doesn’t bear the same kind of dangerous reputation. Some of Lani Kwon Meilgaard’s experiences in AN “OTHER” AMERICAN: on Being Multiracial-American sounded all too familiar:

In Hawaii, I grew up hapa haole, of mixed race. But in England and in Colorado, the identity hapa was taken from me; I was labeled white, rather than being categorized as other, like many of my darker-skinned friends…

Justin, my husband, had been working in England for about two years…But for him this feeling has come from inside — the feeling of being an observer, an outsider — a person who has adapted to living in many different countries. It is an altogether different experience when this feeling of being an outsider is imposed on you from the outside…

“Oh, yes…I am. Thank you,” I replied, uncertain as to why I had become unaccountably shy and withdrawn since I had come to England — a 180 degree turn from my usual personality.

Suddenly, I heard the words, “…Japanese…yes, my wife is part Asian.” Justin said this proudly, holding my hand. I noticed the mother’s shoulders stiffen. Her son said nothing until we arrived at the house.

For the rest of the evening the estate agent’s mother refused to speak with me, avoided my gaze. Her son eyed me strangely from under his bushy eyebrows.

At the time I racked my brain to discover what I might have said or done to offend them. Later, I realized it was nothing I had done, but simply who I was.

See also Chally’s excellent post from today, at FWD/Forward: Invisible Identities, Part 2: The Default Human:

Again, this has some icky effects on those of us who can be read as having an identity we don’t. Because I can tell you, being read as something you’re not? Can hurt like anything. I have experienced having my background erased as intensely threatening and hurtful. This often takes place in white spaces in which white people feel okay being racist because, hey, it’s only us white people here, right? I have had to listen to people question whether it’s better to be disabled or dead, and have sat through it, terrified, because these people, who previously seemed perfectly charming, are confidently questioning whether my community deserves to exist. And at the same time as I’m being misread, I have guilt, because sometimes I cultivate a white, abled image for safety or comfort.

** She is also the one who verbally abused me and insisted I take an IUD I did not want, after I had clearly said “no, I cannot tolerate the hormones”, “no, I do not want that”. You can do stuff like that when you’ve determined that the other person is not really human like you are.

Scientific Blogging
* We Perform Best When No One Tells Us What To Do

The Circle
* Trafficking Of Native Women is widespread
“Sixty percent of the women surveyed entered prostitution or pornography before the age of 18. And about one-fifth had been sexually exploited before their thirteenth birthday. When the girls become adults, the exploitation often continues. They remain in prostitution, but the law often no longer views them as victims, but as criminals…The report found that Native women have been disproportionally impacted by sexual exploitation. For example, Native American women make up about 25 percent of all women on probation in Hennepin County for prostitution-related offenses, according to data from 2007. But Native women represent only 2.2 percent of the county’s population.”

Womanist Musings
* When Black Men and White Men Partner in Sexism
“When Black men refuse to acknowledge the sexism of their behaviour, they are supporting the idea that a group can and should be targeted, thus cementing their own marginalization. You cannot gain freedom by continually employing the masters tools.”

PsyBlog
* How Other People’s Expectations Control Us

The Guardian
* Millions of Britons unable to cope with modern life, says study
“Failure to tackle psychological and emotional needs such as loneliness can store up damaging problems as vulnerable people spiral into depression, making them more likely to suffer unemployment or poor physical health.”

Reuters
* FDA staff urge more antipsychotic review in kids
“‘much more likely to experience an adverse metabolic effect than adults, and the likelihood was directly correlated with age.’ Metabolic effects can include abnormal weight gain, diabetes and increases in cholesterol and blood pressure.”

Beyond Meds
* The FDA Wants to Declare Shock (ECT) Machines Safe Without a Safety Investigation. Tell Them NO!

* The latest from Bonkers
‘Check out the newest addition to the Marvelous Mental Medicine Show, an “educational” poster for kids produced by Janssen, maker of the
ADHD drug Concerta. The poster is Swedish but we’ve provided an English translation. Yes the poster is authentic, and yes our translation is accurate.’

Furious Seasons
* The Anti-Depressant Trap Leads To Bipolar Disorder Diagnosis, Lithium Toxicity – It happened to me, sans lithium.
‘Instead of long-term anti-depressant use leading to health problems and physical dependence (or addiction, if you prefer), it’s now leading to people being re-diagnosed with another disorder. I’ve been deeply suspicious of the whole “Your depression is bipolar disorder” line being bandied about much of this decade and I wonder how many people with long-term depression problems have wound up being diagnosed with bipolar disorder 2 principally as a result of a reaction to anti-depressants. I don’t have an answer. But I do have a hunch. And I don’t like it.’

* Anti-Depressants, Antipsychotics Worst Drugs For Falls In Elderly

Friendly Atheist
* Atheist Goes Undercover and Attends Christian Gay-Conversion Therapy Sessions
‘What he found was precisely what you would think: These programs do nothing to “convert” you from gay to straight. They just try to make you suppress your (gay) sexual urges.’

The Tao of Chaos – A great blog I recently found.
* So, “Normal” Would Be Monopolar?
“Humans have natural rhythms of body and mind, like waves on the surface of the ocean. Things rise, things fall, there is a cycle as in anything else. You learn to live with them and move with them, or you resist them and are battered and make poor progress.”

* 12 Stepping With A Surround-Sound Power – Excellent description; fits my own views far better than “panentheism”.
“Certainly, there is not a god in Taoist writing, no higher power to take anything away. It’s more of a Surround-Sound power.”

* Powerlessness? That’s Like Suicide, Right? – Some interesting observations about an AA concept I’ve had trouble with.
“It is admitting that you must determine what acting like a human being constitutes to you; you must first seek knowledge of what concepts like right and good and honor mean to you, and then you must live the life you believe is good and right or you will continue to feel like you are bad and wrong.”

* This Makes No Sense
“Doing something for another first removes it from yourself. It displaces, in your mind, the responsibility for your own life to a place where it does not belong: to other people. Doing a thing for or because of another literally makes no sense: they cannot take, or be blamed for, what you do in your own mind or with your own hands. You can’t hand off your responsibility for yourself.”

No Media Kings
* Time Management for Anarchists

* Free Anarchomic Released – Time Management for Anarchists Flash animation and comic

body impolitic – Another blog I just found.
* Babies? or Baby Women?
“I’m not a boy; I’m not a girl; I’m a BABY!”

* Fat Cat Fight Continued
comment from Patia, following one from Lynne Murray – I hadn’t quite put my finger on this dynamic before, but have certainly run into similar!
“It was so bizarre. My cat was nowhere near overweight. I could only conclude that the vet was passive-aggressively talking about me. Needless to say, I found a different vet.”

I ran across an irritating, if less than unusual, case of NIMBYism in a local paper. I found it online on the Romford Recorder site, though I initially saw it in the most recent (3 December) free Romford and Havering Post–also an Archant publication–when I was about to peel vegetables on it.

Care Home Protest

I’ll quote some of the more brain-breaking bits.

RESIDENTS will have to wait even longer to find out if a residential care home housing people with learning and physical disabilities is built near their homes…

Councillors put a halt on the application for a second time because they argued that the bulk, mass and position of the home would be intrusive and un-neighbourly and because of an increase in the levels of noise and disturbance…

Resident Mr Green said: “This residential home will be located near a pub, three off licenses and a major road so for people with drink problems I do not see it as a suitable location.

“And we are concerned about the safety for our children because it is near a playing field and there are school children from at least two primary schools who walk past the site.”

The application which was also deferred at a earlier meeting would see the care home housing 12 residents with learning and physical disabilities including schizophrenia, depression, anxiety and bipolar disease.

But Cllr Robert Benham (Con, Brooklands) argued that the residents were opposed to the application because of its location, not because their patients had mental health problems.

He said: “202 local residents signed a petition against this proposal not because they are against people with mental Health problems but because this proposal is in totally the wrong location and would have a negative impact on both local residents and the care home users.”…

Before the meeting started a group of around 60 residents staged a demonstration outside of the Town Hall expressing their anger against the application

Erm, OK. A group home originally stated as for people with physical and developmental disabilities–in U.S. parlance; they’re not referring to dyslexics, as I still automatically parse the “learning disabled” bit!–is actually intended for people with mental health problems and/or developmental disabilities. I’m not sure if it was the reporter’s ignorance confusing things, or if some of the people arguing about this don’t know the difference. Possibly both.

Not that there is a difference in how people who fall into those categories should be treated, mind you.

And these anxious, depressed, bipolar (diseased?!), schizophrenic people are just waiting to go pub crawling in the neighborhood; it’s unclear whether they’re expected to attack and otherwise frighten children before, during, or after these binges. Puhleeze.

Yet the NIMBYism has nothing whatsoever to do with stigma. I know I believe that.

Especially being familiar with the mixed-use neighborhood; the proposed construction as described would hardly stand out. It’s mostly residential, but with a lot of businesses–like the pub and off-licenses mentioned–mixed in. We live close by.

I was pretty sure I’d seen at least one similar facility on that street already, and a quick look at Google turns up two: an apparently unnamed one for developmentally disabled people (specialist care for epilepsy) at 89 Mawney Road, with 6 rooms available; and Churchill House, “Mental Health, excl. Learning Disability or Dementia” (specialist care for schizophrenia) at 48/50 Mawney Road, with 12 rooms available. There is also a retirement home at 91-95 Mawney Road, next door to the first one mentioned.

My take on this? It’s far from an unusual situation, and all the more galling because of that. I’m well past sick of this kind of discrimination and general arsiness. I put this down to two main factors: ignorance and bigotry. There are already too many scarily disabled people–all 18 of them–in the neighborhood, and an appalling number of residents don’t want more. AFAICT, the group home residents already there aren’t causing any trouble whatsoever, but that doesn’t matter.

The people protesting and waving petitions don’t want to know that mentally ill people are more likely to be crime victims–gee, I wonder why, with attitudes like this? From that article:

More than one-fourth of persons with severe mental illness are victims of violent crime in the course of a year, a rate 11 times higher than that of the general population, according to a study by researchers at Northwestern University…

This is the first such study to include a large, random sample of community-living, mentally ill persons and to use the same measures of victimization used by the U.S. Bureau of Justice Statistics…

People with mental illness were eight times more likely to be robbed, 15 times more likely to be assaulted, and 23 times more likely to be raped than was the general population. Theft of property from persons, rare in the general population at 0.2 percent, happens to 21 percent of mentally ill persons, or 140 times as often…

“The direction of causality is the reverse of common belief: persons who are seriously mentally ill are far more likely to be the victims of violence than its initiators,” said Leon Eisenberg, M.D., professor emeritus of social medicine and health policy at Harvard Medical School, in an accompanying editorial. “The evidence produced by Linda Teplin et al. settles the matter beyond question.”

One Guardian article reports:

In a survey of more than 3,000 mental health service users, conducted recently by the charity Rethink, 87% reported the negative impact of stigma on their lives. The damage caused, both actual and anticipated, was wide-ranging; the areas affected include employment, family, friendships, neighbours, accessing education, reporting crime, relationships with health professionals, and feeling confident enough to visit the shops, go to the pub or take part in activities in the community…

Goffman says: “We believe the person with the stigma is not quite human. On this assumption, we exercise varieties of discrimination through which we effectively, if often unthinkingly, reduce his life chances.” An obvious example is employment. One-third of people with mental health problems report having been dismissed or forced to resign, and, according to a report published in 2004 by the Social Exclusion Unit, just 24% of people with long-term mental health problems are in employment, despite them having the highest “want to work” rate of any group. Though four out of every 10 unemployed people are reported to have mental health problems, fewer than four in 10 employers would consider employing them.

Stigma is hardly gone in the U.S., but I was appalled after I moved to Greater London with a bipolar diagnosis. My first GP found me scary, jumped to book a psych consultation I didn’t want nor need, and gave me piss-poor medical care. When I tried to donate blood, I was on medications, but they were not the problem per se; I was informed that the National Blood Service had to assume that anyone diagnosed with a mental illness was incapable of consenting to give blood–and the nurse telling me this acted as though I might flip out and attack her. Seriously. (I was told that this was supposed to change soon–in 2004–but I just haven’t wanted to risk getting humiliated while try to give them my O neg again! ) I’ve seen other people with apparent mental health problems get treated as if they had the plague.

I will be glad to get out from under the specter of England and Wales’ really freaking scary Mental Health Act, which if anything got worse under the 2007 revision:

Introduction of Supervised Community Treatment. This new power replaces supervised discharge with a power to return the patient to hospital if the medication regime is not being complied with in the community…

There were concerns amongst mental health professionals that the legislation was based more upon tabloid stories on the danger presented by mentally ill people (especially the Michael Stone case), than on the practical shortcomings of the current Act. Critics of the Bill asserted that it would mean mental health professionals being “suborned as agents of social control” (Mullen, 2005). Supporters of more restrictive legislation insisted that dangerous people must be detained in hospital by doctors in their own interests and for public protection, regardless of whether they can be treated (Maden, 2005).

I just read today about another frightening provision, Swine flu prompts changes to Mental Health Act:

The temporary changes to the Mental Health Act, as laid out in an unusually short consultation lasting just one month, would mean it would only take one doctor, rather than two, to have a person sectioned and put on medication without their consent.

The measures could have a serious effect on the thousands of patients with psychiatric issues who currently live outside state care, meaning many could be detained against their will on the word of just one health professional.

You already did not have to be a danger to yourself or others, just deemed sick (or weird-acting) enough to need “treatment”. I am not seeing anything more about this since the initial report in September.

What about autistics in the UK? Remember, this is considered a developmental disability, and an awful lot of us have also developed secondary mental health problems–at least partly from other people perceiving us very similarly to how they perceive schizophrenics and bipolars (to the point of a lot of misdiagnosis). According to the NAS’s Don’t Write Me Off campaign:

We followed a group of people with autism as they applied for Employment and Support Allowance (the new benefit for people who may find it harder to get a job because of their disability), and asked about their experiences of work and applying for benefits. The stark reality for people with autism is apparent:
* just 15% have a full-time job
* one-third are currently without a job or access to benefits
* 79% of those on Incapacity Benefit want to work.

This apparently includes all manner of perceived “functioning levels”. Elsewhere, the NAS says “Only 6% of adults with autism spectrum disorders are in full-time paid employment”; I have also seen a 10% figure somewhere, but can’t find it right now. It’s not a good situation, in any case.

Personally, I fall into the “currently without a job or access to benefits” category. My perceived “functioning level”? I’d be placed in the “high functioning” category since I do communicate verbally–if not easily, nor always very well–but my perceived oddness (and PTSD/depression from poor treatment) got me into the psychiatric system at 13. I was considered seriously disabled by mental illness, and received SSI from 1995 until I moved to the UK in 2004. I have had one (low-) paid job since then, for a few months. Starting my own animal care business and/or trying to make a living from writing look like my best options to get away from “economic inactivity”. Working for an employer has not gone well for me so far, in part because I strike a lot of other people as acting weird.

Hmm, looks like there’s some support for my perceptions of a pretty bad stigma problem overall.

Note: I ran across the initial info on the swine-flu excused revisions to the Mental Health Act at Black Mental Health UK, which I wish I’d found when writing the Schizophrenia, epidemiologists, and race? Not a good mix. post! In the article mentioning proposed changes, we find this less-than-amazing information:

This new data shows that less than half of those surveyed, (45%) feel safe a hospital ward at all times. 39% said that they felt some of the time and 16% saying that they did not feel safe at all….

Findings for the latest Mental Health Bulletin published by The Information Centre has revealed that detention rates for black women proportionally, far outstrip that of any other group. This have raised the alarm among equalities group, concerned that many vulnerable women from African Caribbean communities are being locked up on where they may actually be being traumatised.

Currently detention rates under the Mental Health Act is more than 44% higher for black people than that of their white counterparts, with black women suffering the greatest numbers of detentions under mental health law

‘You can almost know which group will feel unsafe on the wards. Our service is aware of black women who have been sexually abused on the wards and these are not isolated cases.’

That article is well worth reading. “The largest ever national survey of acute mental health inpatient experiences shows people are routinely being let down in important aspects of their care” is putting it very mildly indeed.

Again, I scaled this photo not to overflow the column here too badly, but you can click on it for a bit larger version.

Back to the photo that inspired the last post, I got a sinking feeling in response to the protest signs, but I think I can understand it. There’s a lot of local opposition to all the environmental destruction from mountaintop removal mining, as one would expect. It’s impossible not to see people getting hurt, while whole mountains are getting honest-to-goodness pushed over and it’s polluting everything. A number of towns do not even have potable water anymore; I stayed in one, and was issued bottled water. There may be a few people living there who consider all this a good state of affairs, but I haven’t met any of them.

The big difference? As compared to some of the insulting lookie-loos mentioned in the last post (‘it was obvious that I, at least, was not there to rudely gawk at the hillbillies, and condescendingly make myself feel better by “helping” them.’), the locals are very aware that the area is already in bad economic shape, there’s not a lot of other work around which doesn’t involve pillaging natural resources for the profit of outsiders–and people have got to eat! It’s a terrible situation all around. The local environmental groups are not acting like they know better than everyone else what’s good for them.

While there’s a lot of coal mining further up the New/Kanawha River, we haven’t had much trouble with that back home. That doesn’t mean that we haven’t been dealing with environmental degradation. “The New River is the second oldest in the world, but a recent study now claims it’s also the second dirtiest waterway in America,” thanks largely to pollution from Radford Army Ammunition Plant. It’s now very polluted indeed, and I wouldn’t eat fish or shellfish out of it on a bet, now that the pollution levels can no longer be covered up.

Another source of pollution that came out a couple of years ago (can’t find a reference right off)? Unapproved dumping in an old quarry, bought specifically for the purpose of disposing of toxic waste trucked in from out of state. Though most of the coverage seemed to be of damage to the river, that’s a limestone quarry in karst. This is not the first source of heavy metal and other contamination of aquifers in the area.

The tributary near my house back in Radford, Connelly’s Run, is horribly filthy from landfill runoff, including PCBs. There was a Tutelo town on the creek, just on the other side of the hill from where I grew up. I resorted to hiking over there to go to water anyway, a couple of times, when I was back home and short of time–but felt like I needed to scrub myself afterward.

What’s coming out of the tap is not much better.

People have lived on that river for at least 20,000 years, depending on fish, mussels, crawfish, etc. I have eaten one hell of a lot of fish out of that river myself, before we knew just how filthy it is. Corporate greed has gotten it into that state since 1941. Poorer people are still having to try to find clean enough water to supplement their diets with fish, especially as bad as economic conditions are right now. Another aspect to tie into the recent Racism 101: poverty, race, and health threats post.

So, no, we haven’t had much mining to deal with in our part of the New River Valley, but we’ve had the Radford Army Ammunition Plant (you can see how it’s right on the water), which opened during World War II. When it was still a union shop which paid relatively well, both my parents worked there. My Papaw worked there for 40+ years; so did my Mamaw during the war. A lot of people were commuting 1.5-2 hours each way from neighboring areas of West Virginia (it’s roughly 30 miles from the state line). My mom felt like she had to work there, knowing it was a terrible place, since it offered the best money without additional degrees in her chosen field of Library Science; my stepdad spent years unable to work, with massive medical debt, and we really needed the money and good insurance coverage right then.

As has happened repeatedly with mines, the whole joint shut down in the ’90s, and reopened non-union, under different management. Both my parents lost their jobs. A lot of people still probably have no obvious choice but to commute for less than half the pay and worse safety conditions. I knew a couple of people who worked there afterward, and it did sound even worse.

Most of the time my stepdad (who grew up in the DC area) worked there, it was as an engineer. A number of his coworkers were shocked to find out that he was married to a local, much less one who worked on the lines. Good indication of the atmosphere.

A great anecdote: One time my mom got saddled with an environmental assessment inspector sent in from New Jersey, because they were being forced to make some token discharge reduction/cleanup gestures. This inspector made sure to inform everyone in the building that she was sick of having to come in and clean up after “You People”. I don’t think she even paid enough attention to notice that my mom did “look Indian” (by colonial racist standards); she was too fed up with her own mental version of Generically Horrible Hillbillies. We are safely dismissed and demonized, either way.

The people working there were very aware that they were up to their eyeballs in toxic chemicals all the time, that safety equipment and procedures were frequently inadequate, that they were bringing traces of said chemicals home to their kids, that the jerks were polluting everything, and that this was not a good state of affairs for anyone. (Well, other than one very strange woman my mom worked with, who thought they were making hideous grey pasta rather than rocket propellant, but not only was that unusual to say the least, she was from Michigan!) When things were not under close scrutiny, employees were ordered to openly dump barrels of toxic shit into the river. You could (probably still can) see funny-colored, reeking trails of the stuff flowing down the river.

It has caused a lot of conflict for a lot of people. What the place was doing to the river was widely considered as close to sacrilege as you can get. On one hand, it was such an openly evil place it was hard to find any humor whatsoever in it; on the other hand, people’s families had to eat. An awful lot of people got PTSD from working there; some of the stories I’ve heard–and not just from my family–were almost beyond belief. (My mom got both sexually harassed and assaulted by supervisors, and is far from the only woman I’ve heard that from.) It was pretty much Wétiko Paradise.

Sometimes there isn’t any particularly good choice available. That helplessness–and self-blaming because of it–can cause an awful lot of extra mental anguish in itself.

It’s hard to tell exactly what killed my mother at 60. Her elementary school was built on an old dump site in the early ’50s. The teachers had to warn them to stay away from the rats and the puddles of unpleasant substances seeping up out of the ground. (I went there too, BTW, but at least the visible puddles had leached away by the ’80s. ) A disturbing number of the kids she was in school with died of some kind of cancer before they hit 40; this started before they finished high school. Then she lived on what was rapidly becoming the “second dirtiest waterway in America” for most of her life, and ended up directly working in toxic chemicals. She spent the last ten years of her life seriously disabled. Her quality of life was poor for a long time, but she’d apparently had the cancer in her bones for an estimated 5+ years before it spread to her breast. Still, even with the mastectomy, the fact that the ribs underneath were already eaten up with it was not caught until she collapsed five years later. She never even got a reasonable diagnosis; her death certificate claims “breast carcinoma”, when they knew good and well that it did not start out in her breast. I do not think that was completely unintentional; it’s just too convenient, under the circumstances.

They found my Papaw’s lung cancer during his retirement physical, and he died less than a year later, at 65. That was blamed on smoking, naturally, but there were so many potential factors (including asbestos) that it’s overwhelming. I also clearly remember his yelling until he was red in the face, then breaking down and crying when my mom told him she didn’t see any choice but to go to work there.

And that’s just two examples of how living in a toxic stew have affected two people. Yes, it makes me very angry indeed, and not just because these particular cases were my close family. This should never happen to anybody, anywhere.

You see this kind of pattern all over the world. I can’t help but see an extra Fourth World element to our particular regional variation of this pattern within the U.S., but it’s all based on cannibalism and exploitation: wétiko. Not only are natural resources fair game for anyone with money, so are any people they care to dehumanize and consume.

Yes, environmentalists tie back in. I am very concerned about all the damage, as are an awful lot of local people. It’s hard not to notice nor care, when you see things getting torn up around you and people getting sick and/or dying from this stuff! A number of locals have become very uncomfortable calling ourselves environmentalists, even when we are.

Some of the people calling themselves environmentalists are respectful, but too many of them are not. They have come in, connected to the universities, and further dehumanized the local people. They know better than we do what is good for everybody and everything, and do not hesitate to say so.

Some of them, too, make it plain that they are sick and tired of cleaning up after “You People”, i.e. the Hillbilly Lumpenproletariat. I am particularly fond of the ones who also go on about justice in Central America, while their privilege blinds them to the fact that they might also be treating indigenous people like shit, closer to home. Too many of them continue in the mindset that says treating other people like things is OK, when that’s what’s gotten us into this mess in the first place. It adds insult to injury.

So, yeah, I think I have a pretty good idea of some of the things motivating these miners. It’s not necessarily what some stereotypes might lead the unfamiliar to believe.

It also did not surprise me the magazine article illustrated the possible barriers to sustainable energy with a picture of hillbilly coal miners waving a surface-obnoxious sign. (Rather than, say, a photo of Massey’s corporate headquarters, not located in Appalachia at all.) That just fits so well with so many preconceptions, not to mention keeping away from the real cannibals and their power.

In the November issue of Scientific American, I also ran across a photo which I found striking. (On p. 45, in “A Path to Sustainable Energy by 2030″.) It’s of a group of miners protesting in West Virginia, and actually serves an as excellent example of why West Virginia consistently ranks high in obesity stats based on unadjusted BMI. I scaled it not to overflow the column here too badly, but you can click on it for a bit larger version.

What do we see here? A lot of people who would be considered burly by most standards, with big shoulders, barrel chests, and rather a lot of muscle; also bear in mind that the average male height here is around six feet, rather than the 5′9.2″ national average. Look at the arms on a lot of these men! Notice that the women in the front row are not small by comparison. A couple of the folks here are chunky for their build, but most of them are not. There are maybe two people visible that, based on experience, I’d expect to have a BMI of 25 or less, possibly including the old lady with her arm in a sling in the front row. I’m not even sure about her.

I was born in West Virginia, and I’d fit right in the photo. As further illustration, I’ll bring forward a couple of GIMPed-up photos from an earlier post, comparing my mom and me to a couple of (Eastern Band Cherokee) The Warriors of AniKituhwa guys:

Those were cobbled together to illustrate that this type of physique is fairly common among certain groups, and how ridiculous it is to expect women to be remarkably smaller. Things just don’t work that way. (As an indication of basic infrastructure, I was wearing a DDD/E cup in these photos, and it doesn’t look very big with the ribcage and shoulders.) While the dominant culture really does not value this kind of build among men these days, it’s even less acceptable if you’re a woman. My trained reaction to seeing these photos is still to cringe–and point out that I was at least 40 lbs. heavier there, to further distance myself from them–though that’s improving now that I have a better idea what’s behind the shaming.

“Fatness” is used as a major rationale for looking down on whole groups of people these days, no matter their actual body fat levels. It’s really popular to ignore the fact that different groups of people are meant to have different builds. That’s Eurocentrism for you; the rest of the world just doesn’t Measure Up.

What initially caught my eye was–particularly striking, since I’ve been living in Greater London–that most of these folks have a similar build and facial structure to mine, including variations on my “hideous” nose. (No wonder, since a lot of my biodad’s family comes from the WV/KY coalfields.) I don’t see anybody here without high cheekbones and a low nasal bridge. Most of the people shown here could be my family*; some probably are distant relatives. This has also impressed me while spending time in the Big Sandy and Kanawha** drainages.

For fun, here’s another one from that old post, showing me with a couple of members of my paternal family and Thayendanegea (a.k.a. Joseph Brant)***:

At any rate, the Dread Obesity Epidemic is mostly just a new excuse for hating on us hillbillies. Shame so many of us have internalized this by now, as I know from hard experience.

Additionally, it struck me again that very possibly some of the Horrible Hillbilly Inbreeding stereotypes have come straight from the hoary old “They All Look The Same” perception. We don’t look any more alike than, say, the English do; we just look sufficiently different from them. (This is besides the Carrie Buck factor.) Not to mention a lot of people still keeping close track of genealogy, so they can tell you that somebody is their second cousin once removed–and wouldn’t marry them on a bet, BTW, which is part of the reason for doing it. That might make it look to outsiders like more people in the area are actually related than would seem to be the case if they were completely unaware of the fact; either way, they’re still related!

As for the “Treehuggers Go Home” sign, my take is getting shuffled over to a different post.

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* I actually got a bit of an early wakeup call when I went to the Pike Co., KY/Mingo Co., WV area in 1994 or 1995, to help build a Habitat for Humanity house with members of the Appalachian Communities elective I was taking. (I’m still conflicted about the motives there, though mine were probably very different and less condescending than the organizers’.) That’s the same exact area a lot of my biodad’s family comes from, but I hadn’t spent time there since I was a kid. I couldn’t help but notice how many people did look like my siblings or cousins, unlike in the more heavily Tutelo area of the New River Valley where I mostly grew up.

Old ladies kept zeroing in on me to (very politely!) inquire as to who we were, where we came from, and what we were doing (and who I might be related to that they knew): sort of a modern version of the classic “1. Who are your elders? 2. What message did they give you for us? 3. What Clan Mother welcomed you, strange person?” asked of visitors who wanted to speak in councils. Not only was I the only local-looking member of the group, I was also the only one familiar with the social scripts in play, which was kinda their point. In a way I find it galling that it’s such a persistent problem, but in more ways I was glad to be able to give the group rather a lot of good PR: it was obvious that I, at least, was not there to rudely gawk at the hillbillies, and condescendingly make myself feel better by “helping” them.

Particularly striking? The woman whose house we were building looked oddly familiar, and I was trying not to stare at her rudely. Then it dawned on me that she could have been my slightly older sister–and I did not think she was ugly. It really impressed me, realizing just how much alike we did look, and how much appearance-based crap I’d obviously picked up!

** Both part of the Ohio drainage; the New River, which I grew up on, turns into the Kanawha once it gets closer to the Ohio. It all used to be the Kanawha–or part of the Ohio itself, depending on viewpoint (then there’s the old Teays). “River of death”–WTF?! I guess the neighbors just didn’t bother to tell us about that. Or something.

*** My initial reaction to portraits of him was that he was one ugly sucker; talk about projecting internalized hatred onto other people! Come to find out, while Thayendanegea was a Mohawk war chief, his family were Wendat adoptees; he was born in the Ohio Country. A lot of Wendat (a.k.a. “Huron”) also ended up in West Virginia, many along the Kanawha; the influx seems to have affected language in some areas.

BTW, Barbara Mann–herself from a “Grey-Eyes” Ohio Erie/Wendat lineage–has plenty to say about the carefully cultivated myth of Northern Europeans as the world’s only light-skinned people. In (the much-referenced!) Iroquoian Women, she also provides an analysis of the “Fall of Huronia” in which people’s motivations actually make sense.

Earlier tonight, I experienced an excellent example of recovery in action, and thought I’d write about it.

The prelude: our washing machine is on the fritz, so this afternoon Nigel and I headed off on the bus with huge bags of laundry. The most easily accessible laundromat is only about a mile and a half up the A-road we live on, but the bus we climbed on was standing room only. After spending most of the trip trying to balance with a walking stick in one hand and a big blue IKEA bag in the other, I decided to get off a couple of stops early, before I gave in to the temptation to bring my stick into sharp contact with the next person who shoved me!

The laundromat was busy and noisy, with bright, buzzing, flickering fluorescent lights overhead. With the further sensory bombardment from that, I didn’t have a chance of concentrating on a book–but I’d thought to bring my mp3 player along, and the situation was much more tolerable with some help from Operation Ivy and Muddy Waters. Still, it got pretty stressful, and after a while some facial tics started up. The laundromat owner gave me some funny looks, but I didn’t feel as self-conscious and ashamed as I have in past, knowing what’s going on with that now.

By the time we got out of there, I was pretty overloaded. Waiting for the bus, I gave the tics freer reign, and used some deep breathing and mindfulness when I noticed I was feeling panicky on the way home. Once there, I lay down a while to relax and get my equilibrium back–and to deal with the shoulder, back, and knee pain from wrangling sacks of clothes. So far, so good.

We were both hungry, and had discussed heading down the street to a delicious Chinese place. I was not sure it was the best idea without more downtime first, but it was 7:30 by then; I was starving and Nigel had gotten a reservation, busy as the place is on a Friday. So, against my better judgment, I wound down for less than half an hour before putting on some better-looking but less comfortable clothes to set out again (knowing I’m really sensitive to the feel of clothing). Not the best idea, in retrospect.

The restaurant was jam-packed and noisy enough that I had to rely heavily on speechreading (tiring!), with two groups celebrating birthdays. The food is usually well worth all the bustle! By the time we’d eaten appetizers and a delicious veggie alternative to crispy duck or lamb–and were ready to order the main course–I’d taken three short trips outside to get away from all the stimuli and try to bring myself down from the sensory overload. I usually also watch their aquarium, but we weren’t sitting close enough to do so without another diner thinking I was staring at her. The facial tics started up again, and my verbal ability and auditory processing went downhill. The pain had become very distracting, as well.

When we were ordering the main course–the first round, at least, since they’ll bring all you want–the waiter misunderstood my order, thanks to two dishes being run together on the menu. (Szechuan beancurd with spring onion and ginger sounded plausible and tasty!) My brain was feeling too scrambled to try to get the order straightened out, so–with a bit of a sinking feeling–I decided that whatever kind of beancurd dish they brought would have to be OK. It was frustrating not being able to speak up very well, and that added a good bit of stress. At least I was aware of why all this was happening, and made some effort not to kick myself over it and really send myself into a downward spiral.

By the time the food came, I had taken another trip outside, but was still twitchy and getting sick to my stomach from overload. The sauce on the dish I got (still not sure what it was!) was offputtingly sweet and sour. The rice had obviously been sitting around a while; I seem to be one of the few non-Asian people in Greater London who orders plain rice instead of fried with a meal, though this place has always served up fresh stuff in past. The always-scrumptious baby pak choi with garlic Nigel and I got to share didn’t even taste good, and I knew it wasn’t the quality of the dish that was the problem. I just couldn’t eat by that point. Out of frustration and disappointment, I almost burst out in tears, but kept a handle on it. I knew I was on the edge of meltdown.

Of course, this started me into the old “Waaah! I’m ruining the meal for everyone else! I just need to straighten up and act like a normal human being instead of some kind of crazy loser! Why do I keep disappointing and embarrassing people I care about in public? He’s probably really mad at me!”, and so on. By now, though, I am able to stop it. It was a more or less reflexive reaction, but I did not believe what the script was insisting I say anymore. I was very aware that it was a script–and did not engage with it*, but just let it peter out on its own.

Nigel was aware of what was going on, and was excellent at dealing with things. He mostly just expressed concern, gave me space to calm myself down, and suggested he get the check. In short, he treated me with respect, and not as though he knew better than I did what must be good for me. I made sure to let him know how much I appreciated that on the walk home!

Yes, I had managed to calm down enough to carry on a halfway reasonable conversation within a few minutes of leaving. When we got home, I got down for better than an hour’s worth of relaxation and meditation. After that, I was kind of worn out from all the earlier stress, but felt enough better to get a cup of cocoa and a snack, and even to watch part of a DVD with Nigel. I did need some pain medication, but the pain levels were probably a quarter what they had been earlier.

This doesn’t sound like a great afternoon and evening overall, but I was very relieved at how well things turned out!

What would have happened even five or six years ago, when I was stuck firmly in the Broke Brain Syndrome model?

First of all, if I’d gone to the laundromat at all, I’d have probably had enough “panic attacks” that I’d have needed to leave abruptly halfway through washing the clothes–possibly after melting down and feeling humiliated by it. For a number of years there, I didn’t get out much, not knowing (a) that my sensory issues are very real, much less (b) how to work around them so that I don’t get so overwhelmed. I’d have been a wreck for the rest of the day after that, and would have had to take rather a lot of anti-anxiety meds.

I did go out to eat with the extended family more frequently, at least a couple of times a month. Every trip was miserable, especially since we tended to pick a “kid-friendly” (i.e., horribly noisy and crowded, brightly lit) restaurant. I would take a hefty dose of anti-anxiety meds before I left home, to try and crank my nervous system down several notches, but would still get overwhelmed–and frequently try to tough it out by taking more antianxiety stuff halfway through the meal. (My nerves would still be twanging, as I got frustrated at feeling goofy and uncoordinated!) At least two times out of three, I would melt down and go cry in the bathroom or outside. A couple of times I ended up just leaving in the middle of the meal and walking home, when it was close enough and I couldn’t take any more.

Some of the other medications I was given made it very difficult indeed to think my way through difficult situations, much less to find better ways of coping with them.

If I had trouble communicating from overload at any point, my parents would try to “help” in ways that just were not helpful at all. In a case like tonight’s, somebody would have sent my food back over my protests, and acted exasperated and/or irritated when I could not eat the replacement food. They’d have already pressed me to come along in the first place, on the basis that trying to do threatening things could only help my “agoraphobia” and “panic disorder”. That left me feeling like I just wasn’t trying to get better, on top of getting very embarassed indeed when I couldn’t maintain iron control over my panicked behavior in public.

They were honestly trying to help, but had no understanding of what was going on–and were, unfortunately, inclined to assume they knew better than I did what might be good for me. They were good people who were, sadly, going along with common ideas (including from professionals) of how they should deal with their “mentally ill” kid. Experiences like this–and something happened every day–just reinforced everyone’s idea that I was crazy.

Yes, earlier tonight I was also dealing with “Oh crap, now Nigel is going to embarrass and snark at me on top of everything else, and just won’t leave me the hell alone!”, even after living with him better than five years now and knowing full well that his approach is very different. That kind of thing stays with a person.

But, for the past few years, I’ve had a better idea of what’s going on, so I can try to work with the way my brain and nervous system in general functions, rather than persisting in banging my head against a wall and looking “sicker” all the time. You may not be able to directly prevent the sensory weirdness, but you can work around troublesome situations–and, very importantly, you can change your reactions to the too-loud, garbled sensory information. If you know what’s going on and apply some mindfulness, it doesn’t have to scare you and make you more upset. You can stop the automatic, hurtful scripts from upsetting you further.

Developing a habit of mindfulness has helped me in a lot of ways, including in developing much better emotional regulation. (I had no idea this was possible before, but it is!) That’s helped me deal with stress and depression, in part by learning how to deal with worrying and other repetitive thoughts like the learned emotional self-abuse scripts. Also, as Jane at Bipolar Recovery has repeately stressed, your brain can learn to be calm, with practice.

Recovery from mental turmoil really is possible. I may have a long way to go still, but I’m already having a lot easier time of things, from applying some mindfulness, kindness, and compassion to myself.

BTW, this is also a good demonstration of why I think behavioral approaches to dealing with autistic “symptoms” are frequently so far off base–and I’m not just talking about ABA, even if it’s a major offender. If you are trying to train someone to get rid of a “symptom” such as hand-flapping without taking into consideration why the person is doing it, that can be really harmful. If you train people to stop their “weird-looking” stress coping techniques without showing them other ways of dealing with the stress, things are not going to be pretty. This should fall under common sense. A lot of behaviors considered “symptoms” come from dealing with sensory issues in the first place–as I have found out, firsthand–yet they are frequently treated as inexplicable. Not pathologizing other people’s behavior when you don’t understand it would also seem to be common sense, but hey. If it’s in the DSM, a “disorder” is going to be cast in terms of observable behavior rather than what might be causing the unusual and sometimes distressing behavior.

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* Common approaches to cognitive therapy have backfired with me in past; if I try to counter unhelpful thoughts, that just ends in an argumentative mental loop of its own. Mindfulness had worked much better for me: recognize the intrusive thought for what it is, and just let it go away on its own. What I started doing on my own sounds an awful lot like Mindfulness-based cognitive therapy, which I’m glad is getting some attention, as useful as it’s likely to be for a lot of people.

The posts I wrote yesterday got me thinking about marginalization–particularly of indigenous people, but certainly not stopping there. The specifics may be different, but marginalization is marginalization.

It occurred to me that my automatic perception that nobody else–save, perhaps, some very few people in similar boats–will be interested in reading what I have to write about a lot of topics comes straight from marginalization. Women’s issues, disability-related issues, neurodiversity, my particular set of racial and ethnic interests, how I see history and the ways of thought behind what’s happened in the world still playing out, human rights concerns for goodness’ sake: all these and more are marginalized. We’re supposed to think that they’re irrelevant, and nobody else is interested. We’re supposed to think that any interest we do have in these things is unusual, maladaptive, and very possibly crazy.

I was struck by the evidence of marginalization again, looking for various Native American–especially urban Indian, almost 2/3 of us now–health statistics for the Schizophrenia, epidemiologists, and race? Not a good mix. post.

What did I find?

It’s hard to tell how they get those figures other than for suicide rates, since “Native Americans are routinely omitted from many studies. Two major US prevalence studies—the Epidemiologic Catchment Area Study 1 and the National Comorbidity Survey 2—do not report data on Native Americans, or indicate that statistics on this group are difficult to specify (Duran et al., 2004). In the National Healthcare Disparities Report, only 42% of the measures could be used to assess mental health disparities among Native Americans (Moy et al., 2006).”# We are not even supposed to be around anymore, so there’s no need to study our health. If that’s not marginalization, I don’t know what is.

From the excellent Reconceptualizing Native Women’s Health: An “Indigenist” Stress-Coping Model, which helped me make an awful lot of connections when I read it a couple of years ago:

There are few comprehensive reviews of Native women’s health (e.g., Kauffman and Joseph-Fox1 and Joe11)…

However, Native women have higher death rates due to diabetes (45.4 vs 22.4), all types of accidents combined (38.1 vs 22.0), motor vehicle accidents (22.7 vs 10.5), chronic liver disease and cirrhosis (20.5 vs 6.1), alcohol abuse (20.3 vs 3.5), and suicide (5.2 vs 4.4). Native women are second only to African American women in terms of death rates due to homicide (4.8 vs 9.0) and drug abuse (4.7 vs 4.8).

So, again, most of the information available concerns our deaths. “The only good Indian…” lives on, if by now it’s morphed into “The only Indian…”, period. It’s harder to pretend a dead body is not right in front of you.

High rates of psychiatric problems and related comorbidity have been reported in many Native communities (with frequency estimates ranging from 20%–63% of adult populations), often higher than rates exhibited by non-Native groups. 20 Depression is among the most prevalent psychiatric disorders in Native communities,21 and it has been associated with living in urban areas and with substance abuse.22,23…

Although more than 60% of Natives live in urban settings, only a handful of studies provide any relevant data on the health-related concerns of such individuals, and none, to our knowledge, have focused specifically on women…

Absent a fourth world context, interpreting epidemiological data such as these leads to problematic interpretations of Native women’s health statistics. As noted by Browne and Fiske,27 failure to account for socioenvironmental contexts can lead to pathologized perceptions of Natives, reinforce power inequities, and perpetuate paternalism and dependency in regard to health care.28 Many of the behavioral health problems (e.g., diabetes, alcoholism) of Native women are directly connected to their colonized status and to associated forms of environmental, institutional, and interpersonal discrimination.

So, researchers don’t actually bother to find out what’s going on with us–not just with mental health, but straightforward physical stuff–yet still come up with all kinds of negative explanations for whatever problems we may be experiencing. BTW, I got irked at the inclusion of diabetes among “behavioral health problems”, which just tends to reinforce some of the too-common “you brought this on yourself, you fat lazy slob” thinking.

Moreover, problems associated with racial misclassification may result in serious underestimations of HIV rates among Native women.

It’s not just HIV rates. This is part of the reason there are so few health stats available.

Native people are not supposed to exist, for a variety of reasons, so any individual must be White, Black, Hispanic, Asian, Pacific Islander, etc. Pacific Islanders get lumped in with Asians, but there seems to be far more information available on the health of this composite group in the U.S. Most studies which focus on racial/ethnic/cultural differences and special concerns ignore American Indians. Even now that they’re starting to investigate racial differences in responses to medications, we are not included, nor do any “nonstandard” reactions get recorded much. (This is not to say that any of the other groups of people they do focus on have it good!)

I wonder why some groups of people have so much worse health outcomes, compared to the Default.

Disempowerment of Native women specifically was a primary goal of the colonizers, with the intent of destabilizing and, ultimately, exerting colonial domination over each indigenous nation…For example, among the Cherokee, a traditionally matriarchal society, the British decreased the power of women by “educating” Cherokee males in European ways, encouraging marriage to non-Native women, and privileging mixed-blood male offspring in nation-to-nation negotiations.

This is still happening, though the specifics have changed a bit. Rendering us invisible is a preferred tactic these days. Other marginalized groups get other tactics used against them, but it’s much of a muchness.

A post at Sociological Images also helped spotlight the particular Indigenous Women brand of marginalization: “Poca-Hotness” (NSFW). It’s hard to get away from that kind of thing, but it still makes me queasy.

Like one commenter, I do have to get darkly amused:

WOW. I’m kind of surprised they used an actual First Nations woman in this, I was expecting dark haired white chicks, however most of them look to be more … asian? Some kind of asian, I can’t say and I wouldn’t try.

It’s almost funny seeing my heritage get sexualized, because the rest of the time they’re calling First Nations fat and hideous.

Painfully accurate, that.

Thanks largely to decades of activism, blackface photo spreads and the like are generally seen as unacceptably offensive in the U.S. If nothing else, the people running media outlets are very aware that scads of people will complain, very visibly; it’s not good for business. They don’t expect us to be able to make as much fuss. Anybody who protests is an angry ghost, and probably an impostor at that.

The marginalization theme was also brought home recently by Kahentinetha Horn’s darkly hilarious and incisive account:

AT THE LAST MINUTE on Tuesday, 7 November, we Iroquois found out there was an exhibit opening at the Pointe-a-Calliere Museum in Old Montreal. It was on the “Mysterious Disappearance of the St. Lawrence Valley Iroquois.” They wish! Four of us from Kahnawake, Kanehsatake and Tyendinaga decided to go and look it over.

We were curious as to how they got the idea that we had “disappeared” or that there was any mystery to be solved. How would anyone feel if their so-called demise was advertised and put on exhibit? It’s like finding yourself invited to your own wake when you’re not dead. It really bugged us. Can you understand? It felt like a death threat. It reminded us of the way we were all told at school that our moms, dad, brothers, sisters, grandparents, everyone were all going to die out. We cried. By now we know a terrorist threat when we see one…

We were almost the first visitors there. Instead of welcoming us as the long lost Iroquois, they treated as though we were spoiling their party. The man at the front desk told us we had to pay $12 to go into the wake. We suggested that since we had disappeared and were ghosts in their eyes, we should be allowed in for free. Suddenly he started to speak only French to us. This is when we started to talk only in Mohawk to him.

She goes on to describe some of the dehumanizing ways in which you can present other people when you have convinced yourself that they aren’t able to contradict you: a theme which crops up anytime a group of people is marginalized.

Going back to yesterday’s posts, why might anyone develop mental health problems under these conditions? Also, why might anyone who does not hide the marginalized characteristics–which make them who they are–get perceived as crazy at a very high rate? Why might any anger or despair we show be interpreted as a need for numbing medications?

Might we suffer further health problems as a result of this? Bear in mind that “the life expectancy of those treated in community mental health centers has plunged to an appalling 25 years less than average”, attributed largely to heavy use of neuroleptics, which can directly cause diabetes and other problems. When you’re already prone to that kind of thing from chronic stress, you sure don’t need drugs that will cause the same health conditions. I’m sure that’s a frequently overlooked cause of physical problems, through more marginalization and stigma.

As Paula Gunn Allen put it, “Yes, this IS how it goes: I’m NOT crazy, I’m just Indian.”* I would extend this to being a woman, autistic, disabled, etc.

I’m not crazy, I’m just who I am. And I’m not some kind of inexplicably angry ghost.

Yesterday, I read a very good piece: Bruce Levine’s Liberation Psychology for the U.S.. Approaches more like this would probably help an awful lot of people.

All this comes back to a classic question: How do we resist being marginalized, besides refusing to be properly silent and doing our best to advocate for ourselves and other marginalized people? We need to figure out some approaches that work, with our own tools rather than the Master’s. It’s quite the conundrum, and it’s hard not to get bogged down in despair and frustration.
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* This was in her foreword to Barbara Mann’s Iroquoian Women, which brought out the same response from me. Major consciousness raising, through witty analysis and an awful lot of information. That’s one of the reasons I keep mentioning this book.

One thing I did not explicitly mention in my last post was my frustration over the connection between poverty, minority racial/ethnic and immigrant status, and living in an unhealthy environment being treated as a new idea.

Again, in spite of all the evidence to the contrary, I thought this has been covered during the ’70s, particularly with the lead paint and neurological damage connection. If your (minority/immigrant) kids are eating paint chips in an inner city tenement, that’s horrible, but also a symptom of a much larger problem.

It doesn’t matter if the area is rural or urban; there are just more people to get hurt in a dangerous urban environment. Poor people are more likely to have toxins from mining, refineries, chemical plants, poorly maintained old building materials, toxic waste dumping, violence rooted in desperation and helplessness, etc. where they live. Poor people are more likely to live in crowded conditions which encourage all kinds of illnesses to spread, besides the same kinds of distress produced by overcrowded animal cages. And they’re disproportionately likely to be from non-White and/or immigrant backgrounds.

That’s even before we factor in all the stress from living in a bad environment, and from the way other people and institutions treat you, as a serious health risk.

That’s not news; it’s straight out of Racism 101. And somehow I doubt that this epidemiological approach will be used to work on the actual threats to people’s health, much less improve poor people’s living conditions. Especially given the current political climate, in which “one in four men (23 percent)” will openly admit they “do not think it is their responsibility to help the poor”, and “Only 13 percent of Americans…correctly credit the Bible as the source of Proverbs 31:8-9, the Contemporary English Version of which states: ‘You must defend those who are helpless and have no hope. Be fair and give justice to the poor and homeless.’”.

I might be less aggravated if I thought this research might help anyone in any way, ever. With all the false scarcity ethic going around, it’s more likely to divert further resources from actually doing things that help. It looks remarkably like a distraction tactic, which is too likely to make a lot of privileged people feel like something is Really Being Accomplished.

Nigel picked up the November issue of Scientific American to read on the train, particularly interested in the cover story on chronic pain research. (Another story entirely!) I was leafing through it, and one piece initially looked promising: JR Minkel’s Putting Madness in Its Place: Can the Environment Explain Schizophrenia’s Hereditary Patterns?. A good bit of this references a July article online at Nature (no link offered), put out by the same publishing group.

In the latest attempt, three crack teams of investigators pooled genomic data from 8,000 schizophrenics of European ancestry but could lay claim to only a handful of weak genetic risk markers…
In particular, devotees of genetics might want to cede a little ground to their colleagues in epidemiology, who over the past decade have amassed a provocative, interlocking set of studies implicating urban birthplace and migrant status as persistent risk factors.

I was with them until they mentioned epidemiology. Huh?

And the too-predictable biopsych explanations begin.

Researchers believe the potential for schizophrenia starts to emerge during early brain development, beginning in the womb…

Although the nature of the exposure remains obscure, researchers were able to narrow down its timing: Danes who lived in urban centers for the first 15 years of life had the most elevated risk…

A second wave of findings has documented that immigrants to European countries are at heightened risk of schizophrenia as compared with native-born residents. Second-generation immigrants show increased risk relative to their parents, and rates are highest among those of African heritage. In a study of three cities in the U.K., Afro-Caribbeans were nine times as likely as the general population to be treated for schizophrenia…Despite the consistency of the findings, epidemiologists who work in the field say scientific journals in the U.S. have shown reluctance to consider papers that explore the relation between race and schizophrenia…

Hence, it was not until 2007 that Michaeline Bresnahan, Ezra Susser and their colleagues at the Columbia University Mailman School of Public Health cautiously published data from a cohort of 12,000 Californians enrolled in the Kaiser Permanente health plan, which showed that the rate of hospital admission for schizophrenia was twice as high for African-Americans as for whites, even after controlling for socioeconomic status of the parents. Because the cohort was part of the same health plan, reduced access to health services was unlikely to account for the discrepancy, Susser says…

…those born into more densely populated neighborhoods are at twofold to threefold greater risk of schizophrenia than those born in less dense areas, irrespective of race. Residents of more run-down or overcrowded city neighborhoods could be more exposed to toxic chemicals and infections, she says, and may have less access to social capital that would blunt the effects of a predisposition to mental illness acquired early in life.

In an attractive synthesis, such neighborhood-level risk factors might impart lasting epigenetic changes—the chemical overwriting of the genome in response to environmental cues. If true, the roots of schizophrenia would lie where geography and genetics meet.

I know this is coming from an epidemiological perspective, but I’m still gobsmacked. Looking at environmental factors, these researchers head straight down the rabbit hole and start dreaming of epigenetic changes from toxic chemicals and infections.

Remember, this author admits that “the condition’s genetic underpinnings have stubbornly resisted discovery. In the latest attempt, three crack teams of investigators pooled genomic data from 8,000 schizophrenics of European ancestry but could lay claim to only a handful of weak genetic risk markers.”

Surely that’s a blow to biopsych hypotheses of origin, eh? Maybe the genetics-based chemical imbalance hypothesis of schizophrenia is about as reasonable as when it’s applied to depression? (That article is excellent.) Could they possibly admit that they have no freaking clue what is going on with mental illnesses in general, or maybe that they’ve been ignoring it while it’s been staring them in the face?

Of course not. Silly me.

I continue to be amazed–reasonably given some experience, or no–at these researchers’ ignorance of other, more plausible explanations for racial and immigrant-status differences in diagnosis. Epidemiologists may not have been writing about this a lot, but people in other fields certainly have.

The information, and lines of thinking, in one article from the American Psychiatric Association are hardly new: Issues in the Psychiatric Treatment of African Americans. That link leads to a section on “Psychiatric assessment and evaluation”. What do the authors have to say about this?

Issues that create particular concern in the assessment and evaluation of psychiatric conditions among African Americans include diagnostic bias and selection of appropriate screening instruments. Clinicians must also be aware of the impact of the patient’s psychosocial context on the assessment process. Many African Americans live on marginal incomes in high-crime areas where high rates of drug abuse and unemployment produce chronic stresses…

Since the 1970s studies have reported overdiagnosis of schizophrenia and underdiagnosis of affective disorders among African Americans, compared with the overall prevalence of these disorders in the psychiatric inpatient population (11,12,13,14,15,16,17). However, when diagnoses were based on structured clinical interviews and Research Diagnostic Criteria or diagnostic criteria from the Schedule for Affective Disorders and Schizophrenia, African-American inpatients were shown to have rates of schizophrenia and depression similar to those of whites admitted to the same inpatient units (18,19,20).

Hmm, so we have overdiagnosis of schizophrenia, along with admission that being under chronic stress might have something to do with whatever problems this population is showing.

Kinda like Stress of racism can cause premature births for black moms, historical/multigenerational trauma is believed to cause an awful lot of chronic health problems for a variety of minority groups, and so on (and so on). I went into some of this in Measuring Up?!, and turned up some research directly linking the stress of racism to Type 2 diabetes and other conditions.

I can’t help but be reminded of the Bonkers Institute’s Therapeutic Efficacy of Cash in the Treatment of Anxiety and Depressive Disorders: Two Case Studies. Along with the author’s exposé of NHS cartoon brochures for kiddy antipsychotics, which must be seen to be believed! I wonder how many of the kids getting them are not from White British backgrounds? Here’s an appalling report on How schools fail black boys, focused on London.

MIND in the U.K. also offers an excellent view of The mental health of the African Caribbean community in Britain. (Interesting on the social control front: “Furthermore, Fernando has already argued that the knowledge base of psychiatry grew at the same time when slavery and colonisation were at its highest. [25]“> A lot of it sounds very similar to the The mental health of Irish people in Britain factsheet I linked to before (since it more closely mirrors my own situation as a lighter skinned immigrant from a colonized background): “As well as poor physical health, Irish people in Britain have a high incidence of mental health problem – well above the rates for other migrant groups (with the exception of psychosis in the African-Caribbean population)… a high number of people admitted with mental health problems also have a physical disability.”

In the U.S., the almost 67% of Native Americans living in urban settings (PDF), especially women, also have a high rate of physical and mental health problems and overdiagnosis. From this page, “Suicide is the second-leading cause of death among AI/AN people age 10 to 34 (CultureCard, 2009). Available evidence suggests that mental illness, mental dysfunction, or self-destructive behavior affects approximately 21% of the total AI/AN population, costing an estimated $1.07 billion and incalculable human suffering (Duran et. al, 2004).” It’s hard to tell how they get those figures other than for suicide rates, since “Native Americans are routinely omitted from many studies. Two major US prevalence studies—the Epidemiologic Catchment Area Study 1 and the National Comorbidity Survey 2—do not report data on Native Americans, or indicate that statistics on this group are difficult to specify (Duran et al., 2004). In the National Healthcare Disparities Report, only 42% of the measures could be used to assess mental health disparities among Native Americans (Moy et al., 2006).” We are not even supposed to be around anymore, so there’s no need to study our health. If that’s not marginalization, I don’t know what is.

I wonder how all these similarities have come about?

Research documents that many members of minority groups fear, or feel ill at ease with, the mental health system (Lin et al., 1982; Sussman et al., 1987; Scheffler & Miller, 1991). These groups experience it as the product of white, European culture, shaped by research primarily on white, European populations. They may find only clinicians who represent a white middle-class orientation, with its cultural values and beliefs, as well as its biases, misconceptions, and stereotypes of other cultures. #

Fancy that.

And could it possibly be even more stressful moving into a seemingly chaotic, noisy, overcrowded, overwhelming urban center if you have not been accustomed to living in such an environment? Much less when you run into a lot more overt racism in this new environment? Could this make it more difficult for you to regulate your emotions and thoughts, while you feel constantly bombarded?

Tim Desmond makes some excellent points: Do people suffer from psychiatric disorders/diseases or do people experience varying degrees of human suffering in their own idiosyncratic ways? . Maybe we should reconsider the way we’re looking at the whole thing.

Looking at the epidemiologists’ take on mental health issues, I can’t help but think of the (ludicrous) mercury in vaccines hypothesis of autism. Anything to avoid looking at the kind of social conditions people are living under, much less questioning whether trying to make everyone act or be the same* is a good thing! Surely all we need is more Balance in a Bottle.

The racial/ethnic angle is particularly galling. Gods forbid that we should admit that racism is hurting people. It’s surprising that more members of minority racial and ethnic groups are not breaking under all the stress. Still, we’re far more likely to be deemed crazy and put on (expensive**) dangerous medications for it, sometimes even paid for by the state. It’s hard not to see social control in action here.

Edit: I just wrote another post, Racism 101: poverty, race, and health threats, about a major source of anger I forgot to mention here.

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* And you can bet that’s by upper middle class, dominant culture, White male standards, oh my.

** My cousin’s son is one of the (non-White) “doped to the gills on Medicaid” statistics in Virginia. Pretty much since he started school, he has been turned into a zombie. He started out “disruptive”, and couldn’t even follow a conversation the last time I saw him.

BBC Ouch!
* Jennie Routley’s Tourette ticking: rhyming, singing and clucking

* Lucy Sholl’s Disabled girls are easy

* Anna Rosevear’s Vets and Psychiatrists

Planet of the Blind
* The New Vulgarity

Asperger Square 8
* A Job Interview (video)

What a crazy random happenstance
* Mental Health and Promiscuity

Autist’s Corner
* Why Are So Many Awesome Bloggers Named Amanda?
‘You lose initiative; you become afraid to try something before you’ve been told how to do it, because you’re used to the teacher/therapist/whomever criticizing your attempts, telling you “No, that’s wrong” whenever you do something that differs even a little bit from the response they’re looking for.’

I’M SOMEWHERE ELSE
* They hate you. Yes, you.
“The only reason they’re not about me is that I’m old and verbal enough to not be vulnerable to that kind of abuse. They would be all too happy to practice it on me if they could. Autistic people do not get abused because they are low-functioning, they get abused because they do weird things.”

Yes Means Yes
* Meet The Predators

Pharyngula
* The problem of the oblivious white male atheist

Womanist Musings
* Your Scooter Means You’re Poor

* Disableism Impacts Families

Rage Against the Man-chine
* Getting your eyebrows waxed only makes you a fag if there are no tits involved. (Part 1)
“What the geniuses who own the Alpha Male Barber Spa have figured out is that men, who are falling prey to the machinations of the beauty industry in ever greater numbers these days, have been longing for a way to go metro without the taint of faggotism that surrounds traditional salons or barber shops in gay neighborhoods…These men need tits and football with their vanity services.”

Reclusive Leftist
* Fear of women
“Dig it: the Stupak amendment and the Palin witch-burning are the same fucking thing.”

* Why right-wing populism works
“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…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.”

The Tao of Chaos
* There’s Nothing Inside
“There’s only my mind, and only I am in it. Piece by piece, I disown that anger. Inch by inch, I am free.”

Detentionslip.org
* Book Review: Youth in a Suspect Society

* DetentionSlip.org interview with Henry A. Giroux

Huffington Post
* One In Eight Americans On Food Stamps “one in four children”

Kahentinetha Horn’s Myth Busters in Montreal: “Mysterious” disappearance and re-appearance of the St. Lawrence Iroquois – colonial reports about our death and disappearance are premature and should not be taken seriously.
Darkly hilarious.

Beyond Meds
* How to reduce deaths associated with neuroleptics (anti-psychotic) medications

* Neuroleptics (antipsychotics) go mainstream and for every ill

* Psychosurgery Promoted by the NYT — by Vera Sharav

* My Views on Psychiatry and Mental Illness — John Breeding, PhD

FWD/Forward
* Invisible Identities, Part 1: Invisible to Whom?

* I don’t have a “real” mental health condition, I’m just weak, and other bad self-talk