F%$& Shame, TEDx and Mental Health

I recently gave a talk at the TEDxUCLA conference. The point of the talk was to point out just how impactful, often negatively so, mental health labels can be. In case you are not aware, labels typically come with expectations. As I point out in my talk, these expectations can actually alter individual performance and bias those who are labelled towards meeting their reduced expected success. This effect has different names in different contexts including the expectancy effect, stereotype threat, and experimenter bias. Look them up, listen to the talk (and I've included the text to make things easier) and judge for yourself!

I think you'll find that there's a pretty convincing case for reducing our reliance on mental health labels as predictors of success in life.

Rebranding our shame

I’m going to start with an experiment, but I’m going to need your help. What words would you use to describe me? What labels?

In August of 2001, I woke up in a hospital bed. Now anytime you wake up in a bed you can’t remember going to sleep in, it’s going to cause at least mild concern, but when that bed is in the hospital, you know something has gone wrong. I remember lying there, looking around, trying to figure out what might have happened and who these people around my bed were. And then I realized that my leg was throbbing in agony. Slowly, I stared to remember a little more. I had been riding my motorcycle through Beverly Hills. I remembered a car cutting right in front of me without signaling- I know, in Beverly Hills, it’s hard to believe- and I remembered trying to carefully go around it so I wouldn’t go flying into oncoming traffic. I also remembered not quite making it. I remembered, even while writhing in pain on the street, being pretty worried. One of the things I was dreading was the eventual conversation with my overprotective Jewish mother (who is sitting 20 feet form me right now, btw):

“I would’ve never let this family leave Israel if I knew you were going to be out here risking your life on these stupid crazy motorcycles!” She'd say.

As they were loading me onto the gurney, I remember thinking that I need to call my assistant and cancel the DJ gig I’d booked that night. At least I thought it was that night… I’ve always been terrible at schedules.

Now keep in mind, I’m completely out of it on pain meds, so these pieces are coming together slowly, but there’s definitely something weird going on. And that’s when it hits me: the person sitting next to me was a cop, and I’m handcuffed to the bed. And now I know exactly how I got here and the memories start coming…

Because I didn’t just crash my motorcycle in Beverly Hills. I crashed my motorcycle in Beverly Hills with a half-pound of cocaine in my jacket. During my final 3 years at UCLA I had been using, and selling, what I am pretty sure everyone here would consider a large variety and quantity of drugs. I had been on a delivery run. This was one of the other reasons I’d been worried while lying on the ground…

And then I went to court and rehab, then jail. I got into graduate school and eventually got my Ph.D. In Psychology from UCLA, started a national addiction related website and treatment center and ended up on a Ted X stage giving a speech.

OK. I’m sure as that story went along, you started filling in some details about me. I’ve put the most obvious ones on the screen behind me. Over the course of that story, you learned about more than a few specific labels you could have applied to me: I’m a Bruin; Jew; Immigrant; Musician. But let’s be honest, here- because I have a strong feeling that those were not the labels that stood out and made an impression. Not compared to Drug Dealer. Or Addict. Or Criminal. Or, soon after that, Inmate.

But I know what part of my story stands out. Sometimes, people even bring it up as a compliment- “you should be so proud, you’ve overcome so much,” stuff like that. What I’m usually too polite to tell those people- but what I’m here to tell you now- is that one of the largest obstacle to my success has been statements just like that.

You see, Branding is an intensely powerful thing. This is why people who don’t know the difference between a first down and a touchdown (like my mother in law)still watch the Super Bowl. It’s why, when I ask you if you’d rather have a BMW or a Saturn, you immediately know the answer even if you’ve never sat inside either kind of car. And for branding to be effective, there has to be a core of truth- the BMW is, generally, going be better engineered, more carefully constructed and more luxurious. But is it truly “The Ultimate Driving Machine?” And while an exaggerated piece of branding material about a car isn’t going to ruin anyone’s life, it’s exactly that type of overstatement and blanket labelling when it comes to those who struggle with mental health issues that often keeps them from getting the help they need and overcoming. I know that because…

Over the past 12 years, I’ve made the study of addiction my calling, and really, my obsession. In 2010, I conducted a study meant to examine why over 85% of people who struggled with addiction often do not even seek help. I was unsurprised, but terribly disheartened, to see the results: 75% of our participants identified shame, stigma, and the inability to share their problems with others as a main barrier.

Now, let me ask you this: what was the worst situation or lowest point that you’ve ever been in your life, that you ultimately got away from? Maybe you experienced bouts of severe depression in college but made it through without a lifetime of antidepressants. Maybe you woke up behind the wheel of your car after a night of heavy drinking and you’d made it home in one piece. Maybe you did a little cocaine here and there before going to the club with your friends without thinking much of it. Now let me ask you this: would your life be better or worse, right now, if before finding your way out you’d been officially caught and labelled “clinically depressed,” or an “alcoholic”, or an “addict?”

We need labels to help us understand the world and one another. Labels help us figure out which groceries to buy, what car to drive and what school to go to (UCLA logo on screen).

We’re pretty good at understanding physical labels, but when mental health is at issue we struggle. Typically we believe that each “label” comes with a specific amount of dysfunction in a simple, straight-forward way. If you’re depressed, you’re shut in your room all day, if you have ADHD, you do poorly in school, if you’re a drug addict, you’ve let every other responsibility in your life fall by the wayside because getting high is the most important thing in your world. These conclusions are simple, they make sense.

But there’s a cost to that, a human cost. You see, mental health labels in the early 21st century remain one of our clearest bastions of shame. I mean come on, every single person in this room, suffers from some neuroses, insecurities, and weaknesses, right? But the moment your issues cross the threshold into a certifiable Disorder, you become a walking condition. Suddenly you’re a label with a treatment that has less to do with who you are as an individual and more to do with how you’ve been categorized.

The problem is that, in serving as shortcuts to the truth, labels eliminate any sense of nuance.

This is a QEEG scan of my brain. I’ve already said that I struggle with Attention Deficit Hyperactivity Disorder, and I obviously have some addictive tendencies as well. But let’s look at my brain and compare it to that of another person with the same ADHD label. They don’t look the same, do they? And you wouldn’t expect our ADHD to manifest in the same way knowing this. In the simplest of terms, what this means is that nearly every manifestation of a disorder is unique, with its own symptoms, its own strengths and weaknesses. We can diagnose and categorize and take our best shot at nailing down conditions, causes, and treatments, but the reality is that mental health as a profession is in an ongoing state of reevaluation and refinement, and labels are approximations. When we act as if we know more than we do, when we treat other human beings- no matter how compassionately- as if we fully understand them because of a mental health label that has been applied to them, we run a serious risk of addressing a concept, rather than the actual person.

Now here’s the question at least some of you are asking yourselves: so what? Who cares if we overgeneralize? Doesn’t an ADHD diagnosis get a student extra help in school?

To answer that question, I’d like to tell you about a group of kids in a California elementary school. At the beginning of the school year these children took the standard battery of intelligence and performance measures. Afterwards, researchers informed some of the teachers that a specific test called the Harvard Test of Inflected Acquisition had identified a subset of kids who were expected to outperform their peers. They were told to expect great things this year from these children in particular. When these so-called “growth spurters” end-of-year IQ tests were compared to those from the beginning of the year, they were indeed found to have outperformed the student body as a whole by as many as 15 IQ points! The test was right!

Obviously there’s a twist. There was no such thing as the Harvard Test of Inflected Acquisition. In reality the “growth spurters” had been randomly selected, and yet, their IQ improvement results matched the misleading information the teachers were given. The students, btw, were never made aware of these groupings, so we can eliminate their own internalization as the cause for this effect. The only conclusion left to draw is that the teachers, unconsciously acting on a false belief, actually affected these students towards extra success- an actual increase in their measured intelligence - and also condemned others to fall relatively behind.

Or we can also consider the studies that show that African-American students perform more poorly on standardized tests when they are specifically told that those tests will be used to measure their intelligence. and this differences disappears if the tests are labelled as simple experimental exercises but shows back up with the simple act of making students check a box indicating their race group before taking the test. This isn’t a problem of ability. We’re dealing with expectations and the self-recognition by these students that they’re expected to perform more poorly in some contexts.

And if you’re not yet entirely convinced, I’d like to introduce you to the albino rat. Animals like these are used regularly in neuroscience and genetics research to do things like run mazes, press levers and perform other simply tasks. But what if I told you that simply by labelling some rats as “bright” and others as “dull,” experimenters managed to produce a difference of about 50% in the time it took these animals to run a maze? The only issue, of course, is that all of the rats were essentially identical, with the “bright” ones chosen completely at random. The only true difference were the expectations the research assistants had for them based on instructions.

Take a moment to consider just how incredible the implications of that experiment are. It suggests that even when the subjects in question are unable to understand the meaning of the labels applied to them or what might be expected of them, the preconceptions of those observing them still undeniably alter the results.

What these examples show us is that labels and expectations pinch those being labelled on both ends. They’re being set up for a failure that, even if they somehow have the strength to overcome, is still almost surely going manifest itself in the eyes of those evaluating them.

So how sure are you now that children with ADHD underperform in school slowly because of their own dysfunction? And in how many other setting are we creating failure?

My ADHD can definitely be a burden to me - I can’t plan ahead to save my life – if we were all friends in this room I would have disappointed many of you by missing some scheduled get together or forgetting an important event. I also get easily frustrated and bored and I hate sitting still. But in other ways my ADHD is a real asset. I think outside the box, even in the face of pressure to conform. I thrive in the face of pressure and multitasking that makes many others crumble. And I’m driven, unable to rest on the laurels of small accomplishments when a bigger prize is out there. My various assistants, in contrast, have some pretty noticeable Obsessive-Compulsive-like tendencies- they needs to fill in details, double and triple-check schedules, make sure they can see the path from A to B to C before starting. And you know what? Together, we’re perfect. The same complementary aspect is there in my relationship with my wife, the most balanced, calm, centered person I know, and the only one who can take my crazy anxiety and balance me out. I’m still not exactly sure how I make her life better…

So what’s the takeaway here? Should we throw all the diagnoses out the window and say that everyone’s normal in their own way? Not quite. We don’t need to eliminate labels- categories are helpful. What we need to do, however, is to get comfortable with a much more expanded and nuanced approach to our labels, and avoid moralistic value judgments. Every disorder has levels, and sub-components of those disorders can be just as beneficial as they are debilitating. Sometimes all it depends on is a simple point of view or context. In this way we can start thinking about these less as disorders and more as simply labels that explain differences in our functioning.

It’s up to us to change the conversation to open our society to the attributes and potential of those who have been labeled. The notion that all psychological differences need treatment with the goal of getting the person in question back to “normal” is only sometimes true- but it’s always stigmatizing and shame-inducing. And that shame leads nearly 9 out of 10 to not even ask for help.

If you’re one of the labeled, like me, I’m asking you here and now to take back ownership of what others have put on you. Forget the meaning of label that’s been applied to you and start building your own brand - Identifying the parts that fit and rejecting the ones that don’t. Learn more about yourself and find a life that fits your brain, your body, your world. Your disorder might just prove to be your biggest gift.

If you know someone who is labeled, and we all do, I urge you to reconsider your responsibility to that person. Reconsider what it might mean for your daughter to have ADHD and what elements of that disorder might actually apply to her; what your husband might be capable of despite being labeled an addict; or what your friends’ depression, or anxiety, or bipolar disorder might mean for your relationship. That simple act of careful thought can pull you out of that automatic brand-messaging-mode and might allow you to recognize strengths they have that you’ve ignored because of their “disorder”. More importantly, your effort at truly understanding them might be just the glimmer of light through the clouds that the people who are important to you need.

Imagine what we can do if we take shame out of the equation? I am making it my own mission to flip this problem on its head. I want 90% of individuals who struggle in this way to reach out – and I want you to help me!

Because I am definitely not unique in overcoming my difficulties. I am maybe unique in being so public about it - in not succumbing to the shame that I too feel. And I can tell you from personal experience that sure, beating expectations is nice, but it’s a lot nicer not to be chained down by low expectations in the first place.

My name is Adi and I am not an addict. I am not an ADHD sufferer. I am so much more. And I don’t expect failure for myself, I expect success. Fuck Shame. Sure, I work hard every day to overcome the parts of myself that frustrate and complicate me- but who among us, diagnosed or not, can truly say otherwise?

And while I’m pretty sure that your impression of me now is somewhat different from that you had of me 15 minutes ago, I hope you don’t hold that against me…

© 2015 Adi Jaffe, All Rights Reserved

TEDx talk - Rebranding Our Shame

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