Now that my “real(istic)” situation seems to have been defined on Monday – well, mostly, cause they do want to wait for the mental health thing to be finished before having me leave -, I keep having images in my mind about what my situation was like when I first came here, how it evolved, which it is now, and what in all these images denotes “realism”. And I wonder about those statements made by my parents, who pretty much assume that my core problem is a deep lack of self-confidence. What is being self-confident, anyway? The definition has changed over time.
In early 2006, when I first came to training home, I seemed extremely self-confident on the surface. Self-confident in the way my parents seem to mean it: determined to make high achievement. I remember making a “statement” on January 23 – five days into being here -, by calling Radboud’s student counsellor, which was really not an urgent matter. The only reason why I did it, was to show the staff that this was where I was going to be. Three days later, I convined Renee to allow me to travel to Nijmegen alone. That travel marked the first scratch to my thin surface of self-confidence: I made it to Nijmegen and back, but not in the flawless manner I’d imagined I would if I were the competent blind adult I thought I would be.
The month of February was characterized by what Kenneth Jernigan calls “rebellious independence”. I had frequent arguments with Renee over wanting to do things independently and Renee not allowing me to. The most notable examples were the route to the supermarket and having breakfast in my own apartment. By the March 6 multidisciplinary discussion, the folks created the positive image of me that I wanted them to have. I still suspect that Arda really pushed Renee on this matter. I ate in my own apartment for breakfast, started cooking with Ellen, was not supposed to be saying I had a doorknob’s social skills anymore, and Renee wanted me to think of how I wanted to live once I was in Nijmegen. It never got to that, cause the self-confident facade fell off on March 21.
From then on, I spent my days living in the here and now, and, for so far as I did future planning, it really had no relevance. In my career psychology paper, I wrote: “This usually had the form of at random appearing images that I first idealized and then threw into the dustbin using a standard procedure.” Starting in March and decidedly ending in early October, I used an approach where I believed “realism” would form itself over time and experience would teach me what my real situation was like. I never really abandoned this approach, even though I decided I would. The way of looking at my situation has its good parts, in that it is looking at the factual, natural situation I’m in. However, it has its major drawbacks for me personally, in that I have a real problem seeing the forest for the trees. You see, there are always pictures of my situation, but who knows which is definitive, or so definitive that it allows one to decide I’m done training? Even as early as late October, I openly worried to Renee that we would be going on just experiencing the situation as it was and not taking any steps to direct it till, after so many months, it’d be time to have me leave and the staff would look at the situation of that very moment and decide that was “realistic” for me. Is this what happened last Monday? Sometimes, I can’t let go of the feeling it is. You see, no-one is going to tell me that last week Saturday was not the triggering event to decide I was done training. I know pretty well that Renee wanted to kick me out, but Arda did not. Saying I’m done training is a way of allowing me and Arda to seriously plan for a living situation after I leave rather than just kicking me out – that’s probably why Arda has such a problem with my even mentioning the phrase “sending away” in reference to the June 1 thing -, but of course the thing is that I did behave so badly that Renee wants me to be kicked out.
Does that make last Monday an arbitrary moment for deciding I’m done training? I don’t think so. You see, I already had the idea that I couldn’t ignore my behaviour in painting my picture in early January. At the time, Arda was still assuming I would improve. Not anymore. Now she was the one telling me that I would always need some assistance with creating some structure. And I agreed, not because I would have to, but because that’s what I could’ve been telling her for weeks, but didn’t want to cause I wanted to remain motivated for training. Now does it matter whether Arda or anyone else agrees to the current picture of my situation? In some respects, not at all. Like, my parents don’t want me to get housekeeping assistance. I don’t care: I’ve experienced that it costs me too much energy to do all my housekeeping (especially deep cleaning) when also studying and having my hobbies and social activities, so I’m glad that I can have a professional housekeeper do some of my cleaning. Others would decide on letting their rooms be dirty, and some people would drop hobbies or social activities to do housekeeping. It’s my decision not to and I made that decision already a few months ago – in fact, I didn’t have major difficulties with it on September 22. The blind community might believe I buy into stereotypes, but I don’t care. I want to have a nice life, not spend my whole life pouring energy into conforming to some picture of what a competent blind adult is supposed to be like. If that’s lazy, so be it.
However, having a housekeeper do your deep cleaning, is not considered a problem by most people when you’re blind. Some people have different attitudes about blindness and what it’s supposed to mean, but I can be happy telling them that’s their personal opinion and I don’t care whether employers are having negative attitudes about all blind people cause they see that I have a housekeeper do my deep cleaning. I know that blind people can do exactly the same that sighted people can if they just pour 200% extra energy into it, but I don’t think I’m obligated, by the fact that I’m blind, to pour that 200% extra energy into life. If I want something, I have to pour extra energy into it, sure – I cannot expect the whole world to adapt to my blidnness -, but, to a certain degree, no-one can require me to do something that I feel costs me too much energy for the value it has to me. Like, of course, if I didn’t get funding for hiring a housekeeper, you might think I’d be forced to do deep cleaning myself, but really, I wouldn’t: I could decide to let my room be dirty. Sure, my blind acquaintance who did do all her deep cleaning and hence had an extremely neat house, might not get a job cause her employer had seen my house and thought all blind people keep their places dirty, but that’s not my responsibility.
There is another issue, of course. I wrote about that on September 22, too: assistance required cause I have behavioural problems. This is generally less accepted, for reasons on several levels. First, certain people believe I really don’t have behavioural problems. My mother sometimes holds that view, almost to the point of believing the whole world has a problem but I’m fine. It may seem great, cause it’s placing the blame on everyone else and not me, but it’s not, cause I am the one who has to live in this world. You know, mental disorder is sometimes simply a matter of being in a minority and not being accepted by the majority – homosexuality before 1973, for example -, but until most people in the majority are going to make up their minds, is it strange that the minority think they have a problem? That’s why I sometimes say that the real problem is not that I need clarity, but that others can’t be clear – but the thing is, the majority don’t want/need clarity when I do, so I presumably have a problem.
That doesn’t mean I’m suddenly not going to need that clarity, for example. That’s a big problem I’ve always had with that paradigm of Arda’s: whenever she said I needed too much clarity, she seemed to connote that I shouldn’t be having that experience. My mother seems to think so as well, only she calls it “nagging” when I ask for explanations. In some situations, indeed, I may be able to adapt to the fact that there’s really no way to understand – like, I’ve stopped wanting to clear up the Arda/mother argument over my needing to live on the streets when my parents won’t take me into their house, after both have told me a different story about when Arda said that and why -, but sometimes, not understanding has implications. Like, in November, I was expected to change my behaviour at school, and I didn’t understand how. When I stopped asking for clarification even though I still didn’t understand, it meant that I didn’t know how to change my behaviour. The simple idea that the whole world has a problem but not me, or that my only problem is that I think I have one (which the wanting clarity when I cannot get it may be interpreted as, too), isn’t going to make my life in this world easier. What’s the problem with seeking help with this?
One thing is, which I highlighted on September 22: the risk of having responsibliities taken away. But I don’t think that this is an intrinsic problem in having services on the grounds that you have a behavioural or mental health problem – whether it’s mental health services or independent living assistance or whatever. You see, there are really skilled self-advocates who do have services on this ground. In this sense, I’m inspired by Amanda Baggs. I don’t feel inspired by how little assistance she thinks she needs (self-confidence as it’s used by my parents), but by how self-confident she is about knowing what she needs and advocating for that. Of course, you’ll say, I’m not like Amanda Baggs, cause she – being severely autistic -, has much more serious behavioural/communication problems than I do, so she requires much more assistance than I do. I agree, but that’s not my point. My point is that my situation is my situation no matter what. I might be able to progress in whatever way, but at this moment, this is how my reality is. In 2006, I stood firmly for an imaginary me that was realistic in some ways (like being a college student) and not in others (like having no behavioural problems at all). Now that I have a more realistic image of myself – or think I do, at least -, I want to stand firmly for that as well.
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