Last Thursday, I had my treatment plan discussion. Gerda and the psychologist were present, besides the ward psychiatrist, my doctor, one of my primary care nurses, the recreational therapist and me. I at first wasn’t too happy having the psychologist present – since I hadn’t expected him -, but his opinion was a strong factor in there actually being attention for the problem of my meltdowns. This is a good thing, cause I believe they are still so severe that it isn’t even an issue of whether other people will take them from me: I still have such poor coping strategies that I’ve repeatedly wanted to run off and run in front of moving cars or trains if not for the locked doors of the closed ward where I’m still.
Unfortunately, thanks to Gerda and the psychologist, it did become quite a bit an issue of whether other people would tolerate this behavior from me – and it even became a point of discussion. I guess the ward psychiatrist didn’t mean it literally, when she asked whether there are living places where I’m allowed to freak out. Obviously, there are none. Even on a psychiatric ward, where people are used to inappropriate behavior, a nurse will tell you to stop and go to your room if you slam a door or scream or throw an object, and some nurses even criticize me for having an irritable tone of voice. But this is not what the discussion is about. If only it were!
What I – and, I assume, the other people present – think the psychiatrist meant to ask, when asking about places where you’re allowed to freak out, is whether there are places where I can live even if I continue to have disruptive meltdowns. She first asked whether Gerda’s staff would be willing to take this behavior from me, and got a firm “No”. She later commented that we might find a place where I can have meltdowns, and Gerda commented that there are none, because you cannot behave like I do if you want to live in society. In other words, people who experience significantly disruptive meltdowns, even if they don’t physically harm anyone – cause I never did -, don’t belong in society? Sometimes, this idea causes me to have suicidal thoughts, but I also wonder where I lived for all the 21 years until my commitment to the psychiatric hospital – and I wasn’t committed because of disruptive meltdowns -, and, when I don’t think of myself, I even consider it discriminatory to exclude people from living in society for the simple reason of disruptive meltdowns.
I have been active in neurodiversity for years, fighting for the right of autistic individuals – and, in my opinion, people with other psychiatric or developmental disabilities -, to live in the community with as much or as little support as they want or need. I have advocated de-institutionalization, and often thought that today’s disability service agencies were on my side. But, when confronted with Gerda’s statements about the demands society supposedly places on people, I’ve apparently missed the reasoning behind the fact that disabled people are increasingly often placed within society, even though I’ve writen about it several times and continue to oppose this type of reasoning: “They have capabilities.” So what? That’s not the point.
I find it hard to write about this new form of disablism when my own situaiton is concerned, even though I have no problem writing about it in general terms or when other people are involved – and have often done so. I cannot say that Gerda provided poor care. She did everything within her power to support me in living in my apartment, and, when I discovered that I couldn’t live in this place anymore, she tried to make arrangements so that I could eventually live in one of Werkenrode’s supported living facilities. And it is not the fact that these living facilities are not suited for someone with disruptive meltdowns, that causes me to oppose her position. Heck, the facility we planned on having me move into, caters to intellectually capable people with severe physical disabilities. And it is not that I don’t want to change my behavior, to try to learn to have fewer meltdowns. What I am angry about – and which, when considering my own case, sometimes leads me to have suicidal thoughts -, is the generalized statement Gerda made: if you experience disruptive meltdowns, you can’t live in society.
Why is it so hard for me to write this entry that I’ve deleted and rewritten several paragraphs and can’t seem to finish this entry? I’ve always had such strong opinions on this issue: there is no reason to place disabled people outside of society, no matter the severity of their impairments. Yet there is a voice in my head that says that this doesn’t apply to me. I was committed to the hospital voluntarily. If I don’t say I’m suicidal, I can go back into society whenever I want. I can kick Gerda and her staff out of the door and prove that I’m capable enough to live within the community. No, that wasn’t my point. Now I use the same logic I always defeated again. I’m confused. I don’t know what is the right way of thinking. I don’t want to be angry with Gerda, who tried so hard to provide me good care, but at the same time, she says the most horrible things one can say regarding people with developmental or psychiatric disabilities: that their right to live within society is dependent on some standard of appropriate behavior.