CN: Derogatory terms for mental health conditions and those affected by them.
On Thursday just gone, I took part in the annual Skeptical Soapbox held by the Greater Manchester Skeptics Society (GMSS). The idea is that members of the society give a short talk on a subject with a skeptical connection. This was really cool in itself, but I also presented on a subject that’s very personal to me, and I did really well!
Part of the impetus behind this post is that not everyone who wanted to make it could, and so I’m sharing as much of it here as I can (you won’t get the warmth of my company or experience my unique style of humour, but just try and imagine, OK?). I’m including every slide, with a bit of blurb. I’m especially proud of the fact that I didn’t just read off of the slides á la Death By PowerPoint, because:
- I didn’t want to bore the audience to tears, and it seemed to work out OK;
- I don’t have nearly as much presentation experience as I’d like or need, and this was a big challenge that I totally managed to ace.
And now I present to you, the abridged version of “Are We Mental?”:
Before we begin
My presentation had an interactive element! Prior to our guests arriving, I placed a questionnaire on each of the seats. More on this later….
|Two things about this slide, the title and the image:
The Title: I called this presentation “Are We Mental?”; partly because I couldn’t think of a snappy one and so the GMSS Social Sec provided one for me in the event listing (well, I couldn’t change it then, could I?), and also because we can’t objectively say if we are “mental” or not because that term means different things depending on who says it, to whom, and in what context.
The Image: Is from the Wellcome Image Library, and I found it while browsing one of the many blogs by science peeps that I follow (the blog hasn’t been updated for over a year, but there’s some interesting stuff there – go check it out!). I selected it because I wanted a image that symbolised the stereotypical “lunatic asylum”, without using any images of patients. I find those sort of photos interesting and a useful and personal record of history, but I thought it would be inappropriate for this presentation because, well, I was looking for a stereotypical image, but I also wanted to smash stereotypes.
|My presentation began with a question: “Does anyone in the room have a medical degree?”, to which the response was silence. “Good,” I responded, “because everyone is this room is equally qualified to make mental health diagnoses”. But we were in luck! There’s a simple way to gain your medical credentials, from the University of Google. There are an awful lot of Keyboard Doctors out there, but only an actual doctor can diagnose health problems. As skeptics, we often hold up the example of the patient who believes their 20 minutes on Google trumps their Doctor’s 20 years of training and experience. PLEASE, PLEASE, PLEASE can we not engage in the very same behaviour we condemn? Every time I see someone “diagnosing” someone by Internet (or even in person, more on this in a later slide), or describing antisocial behaviour as “mental health issues”, it annoys the crap out of me, not just because I have a mental illness, but because it’s factually incorrect and dangerous.|
|And so, I have a couple of examples. Recently, there was a video posted on Twitter & Facebook of a woman on the Metrolink racially abusing other passengers. Whether or not you think it was right to post the video online is another question entirely, but what really pissed me off was the inevitable wheeling out of the Mental Health Issues Bandwagon. I think we managed to get two comments in before the obligatory denigration of those with mental health concerns, and then it was a bit of a free-for-all. These people do not have any medical training, and yet they are throwing around diagnoses like a drinking game at a party for medical students. Look at the type of language they are using:
“learning difficulties”, “disturbed”, “needs help”, “not of sound mind”, “a bit mental”, “alcohol and drug abuse”, “obviously a very damaged woman”
So what’s the problem? It’s just a metaphor, right? Well, now that mental health care has improved, we are recognising conditions that might well have been dismissed previously as odd behaviour or a character trait, and those that have those conditions nowadays don’t really like to be classed in the same category as people who are just arseholes, frankly. One of the comments above reads: “as a person with learning difficulties and mental heath issues, these are not excuses, she a nasty bigot”. Right on two counts: when people with whichever condition is Lazy Metaphor Of The Month read stuff like this, it can add to the shame and stigma already attached to mental health (it’s the 21st Century, people!). But there’s another point in their comment:
Using “mental health” as a catch-all for unacceptable behaviour, or strange beliefs, serves to let horrible people off the hook. You don’t have to be mentally ill to be mean, oppressive, irrational or crude – you might just be a dickhead. Mentally unwell people will not be delusional all the time, and delusional beliefs are not always the product of mental illness.
A wonderful example of this is when we criticise political and religious stances. Painting one’s opponent as mentally unstable seems to be the debating tactic of choice in the US Presidential campaign. While no reasonable person likes Donald Trump, we don’t have to stoop to his level in criticising him. And just to demonstrate this is a non-partisan presentation, I noted that the other side are having a psychiatric dig at Hillary too.
|There was a Lone Rational Voice in the comments on that Facebook post: a human with an actual medical background! Making unqualified medical diagnoses of strangers isn’t just hugely unethical, but it also perpetuates stereotypes, reinforces stigma, and spreads misinformation. As our learned friend points out above, “Being Racist On A Tram” is not a diagnostic criteria for any mental illness. And nor is “Being Donald Trump”.|
|The Goldwater Rule is a damn good rule with an unfortunate origin. It came about because a US Senator, Barry Goldwater, sued the editor of a magazine that sent out a survey (as the basis for an article) to over 12,000 psychiatrists asking them to provide a long-distance diagnosis of his mental state. Snr. Goldwater was obviously peeved as this seemed to be used as a stain on his character (thereby buying into the stigma), but seriously, it was a crappy and unethical thing to do. The survey generated over 2,400 responses (admittedly 571 of those said they didn’t have enough info to make a diagnosis), which is problematic enough; but those responses were also subject to the publication’s Artistic License, which painted a less-than-favourable picture.
And so, because some of its members evidently needed to revisit their training in patient confidentiality and ethics (and the statement the APA had itself put out prior to the publication of the article), the American Psychiatric Association decided, in 1970, to make The Goldwater Rule policy.
So if a psychiatrist is forbidden from diagnosing strangers from behind a keyboard, what makes the rest of us think we have any right or reason to do so?
Want to see how harmful one’s “well-meaning” questioning can be? How about this:
|When I showed this slide, there was an audible intake of breath from the audience. I, and they, were shocked that somebody could think it their place to say such a thing to someone they do not know. It may have been well-intentioned, but the underlying message is that the person behind the till felt superior to the customer, and belittled and discriminated against them because of a perceived mental health condition. If that customer had been suffering mental ill-health at that time, how do we think they would react to being body-shamed and told that they lack the capacity to make adult decisions?
I’ve had it happen to me. I wonder if a part of the problem is that well-meaning strangers are looking for a physical sign of an invisible illness. First example: I have alopecia areata, an autoimmune condition that causes my hair to fall out in patches, typically up to the size of an old 10p piece, but sometimes (much) larger. There is a specific pattern to the baldness, and I have been diagnosed by someone with 7 years of medical training, and at least 15 years’ postgraduate practice. Knowing that I was dealing with one mental illness, the graduates of Google Medical School think that once you’ve got one, you’ve got all of them (it’s definitely possible to have more than one mental health condition at a time, and some are more likely to occur with others, but it’s not universal. It’s not like Pokémon – you ain’t gotta catch ’em all!). And so a “helpful” friend suggested that I might suffer from trichotillomania, but I just didn’t realise it. Presumably my sick brain was deluding me into believing I’d actually attended a GP’s surgery and received a diagnosis. I guess that line in my medical record is a figment of my imagination, too.
The second one wasn’t just insulting, it was potentially dangerous. I mentioned to a friend that I was on a diet, and I was proud of how much weight I’d lost (I used to be obese, and by this point I was at the higher end of “normal” – whatever that is). They saw it as an opportunity to reveal their (lack of) medical expertise by suggesting that I might have anorexia. They knew nothing of my eating or exercise habits, my body image, or any of the other factors that contribute to a healthy self. But if I did have an eating disorder, is body-shaming the thing that would have helped me? Or could it have made things worse? Pro Tip: Telling someone with (perceived) anorexia to, just, like, not have anorexia; is not a recognised treatment option.
|And now we get on to the meaty stuff. I suffer from OCD, one of the most misunderstood mental health conditions one can have. Lucky me! It’s also one of the most debilitating, with the World Health Organisation listing it in the top ten most handicapping illnesses in terms of lost productivity & quality of life (Veale, Willson, 2005).
Trouble is, the common perception is that it’s a bit of a joke, right? It’s all about being a nitpicker and excessively tidy and precise, with no psychological reasoning behind it other than the person affected is just “fussy”. Wow, it doesn’t even sound like a disorder – it must be great to be so tidy and organised! WRONG – excessive cleanliness, and its associated obsessions of contamination, are symptoms of OCD, but not all OCD sufferers have them; in fact, obsessions about cleanliness only affect about a quarter of those with the condition.
And the popular view of OCD being just a preference for tidiness and order is completely wrong. And that’s where the brain scans come in. It’s not possible to diagnose someone’s OCD from a brain scan. But we can use brain scans to see the resulting activity in the brain and use this to better understand the disease. What we see in the above scans is increased activity in the frontal lobes, the parts of the brain responsible for reasoning and emotion, battling against the limbic system; which takes care of instinctive functions like hunger, fear, and the sense of danger. A simplified way of looking at it is that the limbic system is the trigger for an obsession – and the frontal lobes frantically search for a compulsion to placate the limbic system’s overenthusiasm. There is nothing wrong with the structure of the brains of those with OCD, the activity is a consequence of the disease, and not the other way round. When people are successfully treated for OCD, their brain scans appear like that of a typical brain.
So to return to the neurobiological explanation for OCD: it doesn’t tell us about the content of the obsessions and compulsions, but it does help us to explain what OCD is. The obsessions experienced are typically worst-case scenarios, of situations the patient could realistically encounter. The obsessions play on the patient’s core beliefs and values. The disease makes the obsessions seem plausible, like terrible harm could occur, and the brain needs a solution. That “solution” comes in the form of a compulsion, a behaviour performed to reduce the anxiety generated by the obsession. Unfortunately, the relief is only temporary, and performing compulsions actually fuels the obsession. OCD is a particularly cruel disease for a skeptic, because it is essentially an extreme form of magical thinking and superstition. But even knowing that the thoughts and actions are irrational; it’s not enough. OCD is a pattern of thinking and behaviour that is ingrained and responds to emotional reactions. It’s very difficult to treat, and I needed to attend a 12-week group CBT programme, and I see a psychiatrist regularly. I take medication alongside the techniques I learnt in therapy: this combination is the most effective course of treatment for severe OCD. But it is still tough – OCD latches on to the parts of the personality and experience that matter the most to the patient.
Does that sound like something to do with cleaning? It’s mental torture – believing you have the power to change future events one moment, and the next suffering crippling doubt and fear that you’re not doing enough. And on top of this, knowing that you are “mad” and being powerless to do anything about it. Obsessions and compulsions can take up several hours of the day; precious time that could be used for so many worthwhile and enriching activities. But it’s not all serious. We can still poke fun at the condition, as long as we understand what we’re laughing about:
|I find these jokes rather more amusing than those about “nitpicking”, or being “anal-retentive”. Because they actually describe what OCD is like! It’s funny because it’s true. They were compiled by an actual OCD sufferer – a beautiful demonstration of how talking about mental health with those affected can yield better understanding and smash taboos.|
|“Ahh, Mr. Tourette, we need a brand new livery for our executive city flyer jet service; we’re looking for a solution that will work for the international market”|
|I love Modern Toss, and in spite of my preachiness a mere two slides previously, I actually find Mr. Tourette extremely funny. But his profane creativity is not a symptom of Tourette’s.|
|And yet that’s what the commonly-held view of Tourette’s is! Not quite that one is just naturally bawdy and lacking in self-awareness, but that the most common (or only) tic that people with Tourette’s have is random expletives. And I can see why this idea has gained such popularity: because swearing is a bit naughty and hence inherently funny, yeah?|
|There is a wonderful resource at http://www.touretteshero.com/ that describes what it is actually like to live with Tourette’s. It’s in an accessible blog format, and was created by possibly the most famous Tourette’s sufferer around today, Jessica Thom. You may know her from her tic of saying “biscuits!” mid-sentence, but she is more than that one characteristic, she is a complex, talented and flawed human, just like any of us.
The above image is from the gallery on the site, which features artwork submitted by people with Tourette’s. The images represent one of the artist’s tics (and the variety of things that can be tics is huge; take a look in the gallery to see!). The above image represents a tic that was repetition of the phrase “green screen cheese” – which seems a lot more funny when viewed in a literal context.
|The power of words, eh? I included this slide to demonstrate how once innocent language and intentions can become twisted over time, and eventually end up as ableist slurs. Most of them were taken from this list at Autistic Hoya. Many of the words above were once medical terms (I think it is still common in American medical literature to speak of “mental retardation”, and I was once diagnosed with a “spastic neck“), but when they came into common parlance, and what with human nature being what it is, things went rapidly downhill.
So do I want to ban words? Hell, no! I struggled a lot with the idea that I should consider more carefully how I express myself once I was diagnosed with OCD (I didn’t realise that was what I had, because the reality of the disease is concealed by the amount of misinformation freely available to all. And equipped with this new knowledge, I started seeing jokes and inaccuracies about OCD everywhere). I still use ethically questionable language often; I’m only human. But I consider my audience carefully. I’d only deliberately misuse language with people that know me well enough to “get” me, and who will understand what I really mean. Around people I know less well, or speaking to a general audience, well, it would be completely inappropriate, and I’d feel so cringey if something slipped out. It might sound hypocritical, but I’m not asking people to be two-faced in their attitudes and beliefs. It would be great if all of us could just drop outdated prejudices about mental health – I’m not saying it’s ok to have these prejudices. What I am saying is that one might want to use a “forbidden” word to describe something, with full knowledge of its history and other associated meanings. So I’d like people to educate themselves – and talk constructively about mental health.
I know full well that these words are used as metaphors, or illuminating descriptions of a concept. But I’d really like it if we used those words with complete knowledge of what they actually mean, and if we stopped using them as insults – it’s not individual words that are the problem, it’s that we think certain medical conditions are an inherent flaw in another person.
|I pre-empted this one (look at me, playing Devil’s Advocate!), because it’s a hot topic in the skeptical world at the moment. The imagined schism between those standing up for social justice, and those who want to be able to say the worst thing possible at all times, and have it beamed into everyone’s brains (to do otherwise would be “no-platforming“, amirite?), removes all nuance from discussions and reduces everything to a dichotomy. So I will just reiterate: I Do Not Want To Ban Words. People will inevitably want to describe a tangible or conceptual idea with metaphors. Sometimes the meaning becomes clearer if we don’t say exactly what we mean – that is the beauty of the English language, and why we have such a rich back-catalogue of literary masterpieces.
People will also make mistakes, and we need to allow this to happen. There’s no point ostracising those who accidentally say the wrong thing, but we also have to accept that we were wrong if we do make a mistake, and listen and learn from it. I want people to use the English language in its full breadth and glory; to have a better understanding of mental health terms, and of the history of our language. I may not like what you have to say, but make a rational and eloquent argument with reliable sources, and I will defend to the death your right to say it.
|Almost at the end now, and we finish by returning to the beginning. I reproduced the “Mental Health Quiz” from Dean Burnett’s article on the proliferation of Facebook Quizzes that claim to offer some insight into the workings of your brain, or what some arbitrary preference really says about you. By this time, everyone had had a chance to read through the quiz, which you can read in its original form here (Clicky!). The answers are below:|
|This turned out to be the longest part of my presentation; people do have a lot of questions and it’s about time we answered them. Ignorance leads to prejudice and fear, and there’s quite enough of that in the world. I found it encouraging that all questions were respectful, and didn’t follow a predictable pattern. Many of them were questions I’d not even thought of asking – so I really was talking about my subject on the fly. I think I managed to wing it.
The conversations I had with attendees after the talk were illuminating: there were those with unbridled curiosity (it’s difficult to offend me, ask me whatever you like), but a surprising number of people thanking me for having brought these issues out into the open, and offering solidarity with a fellow sufferer (I had no idea that so many people had hidden conditions – the consequence of not feeling able to talk about them!).
So not only did I successfully impart my wisdom with relatively few mishaps, I also got the warm fuzzies at the end of it. I made a difference, and we all can. It’s time to talk.