Note: in the process of writing this BADD post, it has taken a different turn than I’d initially intended. As I reread it, I feel that it may come across like I’m targeting specific people, eg. my former social worker, with my criticism. This was not my original intention. Rather, I was meaning to write about the impact the institution environment and accompanying mindset among staff has on people with mental illness. In fact, the point that I was trying to get across is that even well-meaning people may unconsciously dehumanize people with mental illness in an effort to keep the peace and quiet in the hospital environment, and fail to differentiate between illness-related behavior and problematic behavior that is a perfectly normal response to the institutional structure.
Today, May 1, is Blogging Against Disablism Day. I didn’t participate last year, probably because I couldn’t be sure that I’d be home to actually publish my post, even though I’d picked a theme to write on a while before the day came up. The theme I’d picked would be a more personal follow-up to my 2007 contribution on stereotypes and counterstereotypes. I wanted to write about the experience I’d had in the psychiatric hospital of staff treating me entirely differently based on whether I was “good” – ie. not melting down, not showing my irritability at other patients’ behavior, not criticizing the staff, except for maybe a few cynical jokes, and not shoving my distress too much into the staff’s face -, vs. when I was “bad”. Despite the fact that patient rights apply unconditionally unless a court has ruled otherwise (eg. in cases of involuntary commitment or incompetency), it is actually very hard to stand up for your rights when you’re “bad”. One of the reasons is that the staff are not tyrants, and treat you well when you’re “good”, thereby making you believe that you really must be bad when they treat you badly. You’re the patient, after all.
The problem is, however, that being “good” is emphatically not the same as behaving how a healthy person would behave. Rather, being “good” involves doing what the staff want you to do for their convenience. It isn’t “sick” to become desperate after sixteen months on a locked ward, after all. All my “healthy” relatives say they would’ve really become crazy far sooner than that. Many also say that they would’ve become far angrier than I did if a social worker had decided for them which of their relatives are and are not important, had forced them to sign forms to have them move out of the area, and had even suggested that they go on financial management.
A few days ago, someone on a Dutch autism forum started a discussion on the Rosenhan experiment. In this experiment, several perfectly healthy people showed up at psychiatric hospitals pretending to hear voices. All were admitted, and all but one were diagnosed with schizophrenia, even though after their admission, they behaved exactly as they would otherwise have and said that they no longer had symptoms. Everything the pseudopatients did, however, was interpreted as a sign of illness. For example, when they took notes during therapy, they were referred to as “engaging in writing behavior”, and their accounts of their lives were psychopathologized. The conclusion was drawn that psychiatric diagnoses are strongly influenced by the patients’ environment, rather than by their internal characteristics.
Of course, unlike me, the people in the Rosenhan experiment had no mental health problems and had never had any. Even so, does this mean that the mental hospital environment wouldn’t have the same impact on people with genuine mental disabilities? I don’t think so. The problem is that people with mental disabilities do display “sick” behavior besides their institutionalization symptoms, and it may be harder to tell the difference.
However, Rosenhan’s experiment did suggest that one thing that makes it extremely difficult to tell mental illness and institutionalization apart, is the lack of unbiased observation: the pseudopatients were simply thought of as patients and their behavior as illness, without any regard for the individual. And I may be developmentally disabled, and that disability may be an essential part of who I am, but I am still a person, not a behavior modification robot.
And this is exactly how some people in mental institutions seem to see us. Probably not consciously or intentionally, but it is how some behavior will come across. For instance, some people are committed involuntarily because their mental illness supposedly causes them to elicit violence from others, but their fellow patients in the institution are punished for even getting irritable with them, because their irritability is thought of as part of their own mental disorder. My frustration at the long-time hospital stay was also seen as part of my mental disorder, and so was my rage when the social worker forced me to sign Apeldoorn living facility forms, claiming that my boyfriend isn’t important since he’s never introduced himself to her. As I said, probably the staff didn’t intend to suggest that my every behavior is due to autism, but their actions suggest otherwise. One anger tantrum when the social worker forced me to sign the Apeldoorn forms, was a reason for her not to ask me for consent to contact my parents and other people important to me – except that my parents insisted that she obtain my consent before they would do anything. I still believe in this social worker’s good intentions, at least from her perspective: I am autistic and may have meltdowns when in a situation I can’t cope with. To prevent this, she probably tried to keep me away from the stress of having to hassle with living places, etc., that may have led to meltdowns. After all, this is the explanation she gave for not having obtained my consent.
Even if the assumption that any attempt to obtain informed consent would’ve led to a meltdown anyway had been true, is it really necessary to keep the peace and get the patient to do what you want them to do at the cost of patient rights? Healthy people argue, too, and often quite constructively. Healthy people won’t take it that anyone is taking away their right to decide for themselves how they want to live their lives. Some healthy people may even lose their tempers at some point, and on some occasions, they are thought of as on the right side of the matter. However, if the person arguing, or demanding that his civil rights be respected, or especially losing his temper, happens to have a mental health diagnosis and the other person happens to be a staff member, it is all too easy to dehumanize the mentally disabled person’s behavior and assume the “acting out” to be due to his illness. Well, maybe not so: people with psychiatric or developmental disabilities are disabled, yes, and that disability is an essential part of their being, but that doesn’t mean that they’ve lost their humanness and will take things that the healthy wouldn’t take.</p