Terminology

Thinking back quite a few years to when I was in middle school, I remember that I had something of a reputation. Not the one for being a social outcast, weird lunches, uncool clothes or being teacher’s pet, but one I created on my own. I was the “word police” – and there was one word that was the greatest offense. One that teenagers say every single day.

“Retard”.

It’s said to someone who has just done something foolish, someone you don’t like who just can’t do anything right, someone who gets in your way in the hall. The adjective form, “Retarded” is even more commonly used – to describe something that the speaker feels is stupid. In nearly every sentence, “retard” or “retarded” can be replaced with “stupid” and the sentence will still make sense. But what the word actually means is ‘to slow down’ or ‘having been slowed down’. Try inserting “slowed down” into some of those sentences. “This homework assignment is so slowed down!” No one would know what you were talking about, they’d probably look at you like you were... slowed down.

I lost a family member to Down Syndrome before I was even born. Back in the 1960’s when my uncle was born, children like him who just happened to have one extra chromosome were, at best, referred to as ‘mentally retarded’. This was, then, the kindest of the terms. To see the others we need only to look to places and people who have not yet shifted their vocabulary. In one Eastern European country, the floor of the orphanage where all the children with Down Syndrome lie in cribs, the label outside the door read “Malformations”. Ouch. There’s not even an ounce of humanity in that one. Others commonly used across the world, and indeed in the history of the United States, include “mongolian idiot,” “mongoloid” or just “idiot”; “imbecile,” “lunatic” and so many more. Most of them had faded or lost their association with individuals with special needs by the time I was in middle school, but such was not the case for “Retard”. So I made it my crusade.

Now there are campaigns by the number. “Stop the word to end the word”. People first language. Others have taken up the cause, and hopefully are reducing the use of this antiquated term which should not be considered synonymous with ‘stupid’. I personally have started choosing random physical afflictions and using them in place of the “R” word, as an illustration to the listener of how ridiculous it is to use a diagnosis as a put-down. My favorite is “Diabetic”. It usually earns me a double take after which I explain my philosophy.

Today, though, I realized that far more of the terminology we use is inherently prejudicial against people with mental and physical disabilities. In recent years, the DSM-IV, the manual used to diagnose psychological conditions, has been under revision to the recently released DSM-V. In the revision process there was much discussion of what ‘official’ titles to apply to various afflictions. When the first DSM came out, homosexuality was listed as a psychological disorder. In those years “imbecile” was a medical term. As we’ve added to our knowledge, we’ve changed our terminology. But the DSM-V still has what is, to me, a glaring and insulting error.

Mental illness is diagnosed along 4 axes. Axis 1 disorders can be cured, they are usually temporary or intermittent and though disruptive to the life of the individual, are often responsive to treatment. Axis 2 disorders, which tend to be lifelong, deeply built into a person and while therapy and medication can lessen their effects, neither can cure them. The DSM-V, like the DSM-IV before it, terms these conditions “Personality disorders”. This is the terminology with which I take issue. In a world where we are trying to decrease the stigma of mental illness, how can we still use this term?

You might wonder what’s so wrong with it, especially if you’re lucky enough to have escaped Axis 2.Well think about this. Someone falls in love, and when asked what they find so endearing about this person, the other might describe their sparkling personality, good qualities, attitudes, all those non-physical attributes which we use to define people are their “personality”. She has a lovely personality, he has one of those personalities that makes everyone feel at ease, if appearance is the essence of a person’s physical being, personality is the essence of their mental being. Can you imagine telling someone they had an appearance disorder?

I don’t know how we can expect to fight stigma when even the professionally developed material used to diagnose and treat us tells us that there is something wrong, something flawed about our very personality. It tells a group of people who are already prone to self-judgment that their personalities, the fundamental essence of who they are, is wrong, ‘disordered’.

Sometimes I imagine two people meeting on the street. One looks normal but carries an axis 2 diagnosis. The other walks with a limp. One feels physically broken. One feels mentally broken. One carries a diagnosis of a bone or joint disorder. The bone or the joint is broken, not functioning as it should. The other carries a diagnosis of a personality disorder. Logically then we must assume that her personality is broken, not functioning as it should. Her personality, the very essence of who she is, is wrong.

How does this message help the world understand her? How does it help her understand herself?

In other countries, so-called “personality disorders” carry various other names. If you’re reading this, by now I expect you know that I have a diagnosis of Borderline Personality Disorder. Elsewhere it is known as “Emotionally Unstable Personality Disorder” (so, you know, basically the same), or sometimes “Emotional Intensity Disorder”. I like that last one best. I can admit that above all, the disproportionate intensity of my emotions to the events in my life is what lies at the root of most of my distress. Further, the latter term removes the word “personality” from the equation completely (which, interestingly enough, has not been the major sticking point on how the disorder should be named). In doing this it removes the connotation “who you are” is not what is disordered. The subject is changed. It is your emotions that are disordered, because they are extremely intense. I can’t speak for the entire BPD community, but I personally can certainly admit that my emotions are often disordered due to their disproportionate intensity.

I don’t know what spurred me to write this today. I’m not feeling persecuted, I know that I am not a label and that I am not my illness. I guess I’ve just been thinking about the wider world, people who are newer to this game than I am, who might be hurt by an inaccurate or insensitive term. Maybe with time the terminology will change. Yesterday’s “malformations” are today’s children with special needs. Maybe – just maybe, in 60 years, today’s “personality disordered” will be called something else, something less stigmatizing, thus helping us erase the stigma from all aspects of our lives and all corners of the world. This is just my attempt at giving the process a little ‘jump start’.