Today, I read this article from a very critical former mental health patient. I’ve always had strong opinions on this and am still an active advocate for the rights of people with psychiatric and developmental differences, so it shouldn’t be surprising, in this light, that I cannot do much but agree with this so-called “bad patient”. However, it isn’t that obvious anymore, of course: what in the world do I do in the same mental health system that I’m so critical of? In other words, where do “realism” and activism go together?
There is one logic in which “realism” and activism wouldn’t go together, and this is the idea where whatever labels I might or might not need intrinsically define my abilities or difficulties. An example of this logic would be keeping out of something I wanted cause “someone with my disorder shouldn’t be doing that”. This kind of logic was, initially, at the core of my reducing the number of possible college majors from seven to two on November 26 – cause of course I can’t deny that being labelled autistic by Renee influenced my perception of my situation during that week-end -, but I later confirmed my label-based “realism” with experience-based “realism” after the discussion with Elma, Dannie and Arda and my classmates. I now think I made the right decision when I threw these five programmes out of my list, not because of labels – I’ve ceased to care about specific paradigms – but because of the reality of my situation at school. There’s nothing wrong with that: I strongly disagree with the idea that “realism” has no part in the college thingy.
Still, in a way, label-based “realism” (type four in the review of approaches) is not a reliable type of “realism” – and it’s something I’ll constantly have to remind myself of as I develop my image of my situation. This is not even grounded in the fact that Renee, for example, doesn’t even know what she’s talking about when she refers to ASDs, but simply in the fact that who is crazy and who isn’t, and what particular types of craziness imply for a person’s abilities or difficulties, is a pretty arbitrary topic. The white coats who created the DSM-IV did a fabulous job of categorizing people according to different behavioural and psychological characteristics and researching and thereby finding strategies and treatment approaches that would help troubled people in a particular category to improve their lives, but that is not saying that the categorization itself has any intrinsic value. A person, put simply, is far more than a set of labels – and if a person were only that set of labels, I could even cease to look for any others, cause I have enough to blame my behaviour on.
Yet does that mean that the DSM-IV is intrinsically an invalid way of categorizing people that only aims to “make us crazy”? No. The DSM-IV is one way of categorizing troubled individuals (cause almost all disorders require significant impairment in social/occupational functioning as a diagnostic criterion), and a particularly well-researched way of categorizing, in that the strategies and approaches that work for people who share certain symptoms and, by this fact, are given a particular label, are scientifically researched. I am highly skeptical of the idea that mental healthcare professionals decide who’s crazy and who isn’t, cause they, in essence, can diagnose everyone, but I do feel that the DSM-IV serves as a useful reference in working out possible strategies for people who experience serious distress due to the symptoms characteristic of their specific mental state (disorder, if you want). To give you an analogy, suppose that I wasn’t able to be put into any category in the DSM-IV, or only meaningless categories that didn’t help me in any way to understand or work on my behavioural/communicative/social problems, and I was hence given an official “no idea” status. Now suppose that a psychiatrist were to see me – and just for fun let us call him Jansen cause that’s a common Dutch name – and found my case so interesting that he wanted to do a case study on me. He collected every little detail from all the reports that have been written about my behavioural/social/communicative functioning by now or by whatever time the shrink were to see me and everything I told him about my experiences and put them together into a fabulous article for a referenced APA journal. Surprise: his case study is published. After this initial article, lots of shrinsk from all over the world write in to report similar cases and, within a couple of years, Jansen’s Disorder is added to whatever edition of the DSM we would be having by then. Research is started on educational, treatment and supportive strategies of helping Jansen’s Disorder patients and they finally find some strategies that work or define some support that these patients need in order to have as meaningful lives as possible. Now, even if I were the first to be diagnosed with this disorder (cause, after all, I were the initial patient), extensive research on supportive and treatment approaches would not have been started by then. Would the diagnosis have any meaning for me, then? Obviously not. All it would do is to stigmatize me while giving me no guidelines on how to live in the world or what kind of help I would need.
At what point does the fact that, with a label, you have access to resources and strategies that may work for you – cause even for psychiatric disorders with really poor prognoses, supportive strategies exist – outweigh the stigmatizing that is inherent in the label of mental impairment? Sigrid, of course, was right when, on November 29, she cautioned me against seeking labels cause I would be discriminated against on their basis if I wanted a job. This is about labels, not problems: as soon as I were diagnosed with that hypothetical Jansen’s Disorder, I would be discriminated against in ways I wouldn’t be without the label but with the same problems in behavioural/social/communicative functioning. What I told Sigrid, however, is very essential: at this moment, I experience significant impairments in functioning due to my communicative/behavioural/social characteristics, to the point where I get stuck. In essence, it doesn’t matter that I would be discriminated against on the basis of a psychiatric label, if I ain’t competent to work anyway. To my mother I clarified on Wednesday that, besides “just holding on”, it would be easy for me to totally give up and sit on my ass for the rest of my life. The thing is, if I fit some category, I know there should be strategies that may work for me and that will make this situation a lot less polarized. Someone doesn’t develop symptoms cause they have a certain diagnosis; they get a certain diagnosis cause they have symptoms.
All of this is grounded in the belief, of course, that there *is* something meaningful to say about my situation. If I were convinced there weren’t, all I could do is to wait for that hypotetical Dr. Jansen to do his case study on me and, by the time sufficient research had been done into strategies that work for my symptoms, I might’ve decided they aren’t going to help me anymore anyway. Honestly, yes, I dread an official “no idea” status (and yes, these people do exist even in a profession that can label everyone they want) cause, in essence, it’d say that I’m crazy but no-one has a clue how I might work with it, and this might even become a building block of stigmatizing and psychiatric disempowerment with time and unethical shrinks (not assuming anyone’s unethical, but still). Then malingering is a lot better a label even if I disagree with it. That’s why I said my mother might even be right with her paradigms – they’re paradigms, and they even have solutions even if I don’t understand them and can’t work with them. I’m not looking to be labelled just for the sake of it – and everyone who is, should essentially not be labelled at all -, but cause I have a problem that is causing me significant distress.
