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Differences in stigma: an addendum to the NIMBYism post

December 10, 2009

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.

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