I Don’t Owe Anyone a Grateful Heart

Posted on by Astrid

Hi all. Today’s prompt for Reena’s Xploration Challenge is quite fitting. Reena asks us to ponder the paradox of gratitude and resistance.

Sometimes, by being grateful, we can bring about change. I am reminded of a story in one of the Chicken Soup for the Soul books in which nurses on one floor were irritated with another floor’s nurses for their constant negativity. Instead of fueling the conflict by becoming negative themselves, the nurses wrote a lengthy gratitude letter to their colleagues. I am not sure whether this was exactly what the story was about, but this was at least the message I took from it. The fact that the one group of nurses focused on the positive rather than giving in to the other group’s toxicity, turned the situation around for the better.

At other times though, particularly when there’s a power difference between two people or groups of people, gratitude becomes passive resignation. In this case, while it can be helpful in the short term to the oppressed person to keep a positive outlook, if the oppressor takes gratitude as acceptance, in the long run nothing will change.

I will give an example from my own life. Regular readers of my blog know that I’ve been accused of having a negative attitude by many people in positions of power, such as my care staff and treatment providers in various care settings. An example is being told I ought to be happy that anybody wants to work here at all. Well, no. While it’d be easier for me in the short term if I could just accept the umpteenth random stranger for my one-on-one care, in the long run it’d mean I’d always get assigned the random temp worker because regular staff would rather support the others and chill out with other regular staff while they can. Besides, even if it’d cost me less effort to resign than it costs me to rebel, I don’t owe my staff a positive attitude. If there’s anyone for whose sake I should have a grateful attitude, it’s myself.

It doesn’t mean I don’t struggle with this whole idea. I feel intense guilt whenever a staff throws some variation of “be happy anyone wants to work here” at me. I am also constantly reminded in my head of my assigned staff at the intensive support home, who was disappointed in me for never having a perfect day even when they’d followed my day schedule completely and had always assigned me regular staff. Which, for the record, never happened.

I, for clarity’s sake, don’t think violent resistance is the answer. When I have a meltdown over some rule I disagree with, being aggressive will always end in me being restrained. However, there’s a whole world between aggression and passivity. And sometimes, unfortunately, the people in positions of power are so caught up in their reality of being the ones to decide, that they (either willfully or not) ignore my less obvious attempts at resistance.

For example, last week I was trying to resist the “one chance” rule about orienting new staff. I tried going along with what the staff wanted, but this only led to further abuses of the rule. I tried talking sense into the staff, but this didn’t work either. Finally, on Saturday, I had the most massive meltdown. I am not proud of my behavior at all. In fact, I really wish I could’ve solved the issue without being aggressive, if for no other reason, then because the staff are far stronger than me and I ended up being restrained. In the end, I thankfully finally got a meeting with the behavior specialist on Monday and the rule got ditched. Now all I can hope for is that my main message, that I have to consent to every individual rule or agreement affecting me unless the behavior specialist uses the Care and Force Act, got through to everyone.

Quality of Life #SoCS

Posted on by Astrid

Hi all. I haven’t written a blog post in nearly two weeks, since I’ve been struggling quite badly. However, I saw the prompt for Stream of Consciousness Saturday, which is “starts with Q”. Immediately, the word “quality” and, derived from that, “quality of life” came to mind.

I regularly write about this concept when discussing myself as a former preemie living with multiple disabilities. That’s not what I mean this time though. This time, I mean real, day-to-day quality of life. I’ve seriously been on a quest for a more meaningful life.

You might remember me talking about the cup of green tea I was allowed to have one evening. I said back then that it’s normal to choose when you want tea, so most people will not be appreciative of it. I was. However, as I spiraled further into depression, this cup of tea became the metaphor for how bleak my life is, actually.

It could be a lot worse. It was, back in the mental hospital, where, though I could grab food whenever I wanted (or at least I did), I spent most of my days lying in bed or surfing the Internet. Most of my fellow residents also have even less autonomy than I do. And yes, I know they’re severely intellectually disabled, but quite frankly that’s not an excuse. Just because you’re used to well-intentioned others making every single decision for you (and they are used to it as well!), doesn’t mean that’s how it’s always supposed to be. Or how it should be. Like I was at the time very grateful for the cup of tea at 9PM, that’s not how it always should be. That is, of course it’d be good if I remained grateful for a cup of tea, but in real life, I should be able to make the decision whether I want a cup of tea myself.

Unfortunately, I have a ton of ideas to improve my quality of life and gain more autonomy, but these don’t get to fruition. The reason is in part the fact that an idea has to be put into practice and executive functioning isn’t my best quality. Another reason is resistance from staff, either overt or covert.

I could write a book on all the ways staff have verbally, physically and in other ways hurt me under the guise of being human and having emotions too. Or conversely under the guise of safety for the group or that being the reality of staff-client relationships. But I won’t.

I’ll end by saying that, at least, on Tuesday I had a good day cooking curry for my side of the home. That’s what I mean by day-to-day quality of life: having the ability to prepare my own food, for example, or choosing what I’ll have for dinner. Of course, the other residents didn’t have a say in my choice to make curry, but they did appreciate it. We’re a long way from people in long-term care actually having meaningful lives, but this felt like a tiny contribution.

It’s Just Us, Or Is It?: Power Dynamics in Care

Posted on by Astrid

I am currently reading a book called The Dark Side of the Mind by Kerry Daynes, a memoir by a female forensic psychologist in the UK. In her first chapter, Daynes writes about how her college date tells her there’s no justice, it’s just us. Then she goes on to talk about her first job, which is really an unpaid position, at a correctional facility called Wakefield. There, the philosophy is “us vs. them”, “us” being the “good” guys (or girls), ie. the staff, and “them” the inmates, who often committed horrific crimes, such as rape, murder or both. This “us vs. them” mentality was often used to reinforce a rather exaggerated power dynamic, to say the least. As it turns out, it’s not that black-or-white, in that, several years later, a staff member Daynes worked with was given a long sentence for similar horrific crimes.

I want to use this example to talk about power dynamics. Not in the prison system, as I have no experience with that, but in the care system. In a sense, in care, at least as much so as in prison, there should not be “us” and “them”, since we’re all people first. The mere fact that I am disabled and my staff are currently non-disabled, shouldn’t make a difference. Neither should it when it comes to my fellow residents who are deemed unable to make their own decisions.

I just had a discussion with one of my staff about this. This person maintains that she’s in fact at my service, almost like I’m her employer. When I pointed out that she gets to decide when it’s necessary to physically drag me to my room (not that she personally ever has), she said this is because I live with nine other people. Yes, but if I lived with nine other people without staff, such as in student accommodation, no-one would be dragging me to my room for yelling and, if the situation did escalate too much, the police (who everyone except for maybe the police themself admits have a position of power) would be called.

I also mentioned some situations from the intensive support home. For example, staff grabbing a large cookie while giving us a tiny biscuit. “Who’s boss here?” one of the staff once actually asked one of my similarly opinionated but unfortunately less eloquent fellow residents. She named the names of the support coordinators. “And when they’re not here?”, he continued, clearly wanting to hear that the available staff are. I pointed out later that no-one is boss here, only to be told that this was a simplified way of explaining this to my fellow client.

When I told my current staff about this and other examples, I was told this is the way the intensive support home works and that she doesn’t agree with it. At the same time, she told me that, if I want a large cookie, I can get it because I’m capable of making my own decisions, while my fellow residents can’t. While I understand this, on a large scale, may be so, it isn’t necessarily true: I don’t technically follow my agreed-upon food plan either and that’s considered my responsibility, while if a fellow client points to a single extra cookie, that’s denied because their family (or the staff) agreed on a food plan. However, if I have an extra cookie, it will do the same for me as it will for another person (unless said cookie has allergens in it for the other person or whatever). I wanted to raise awareness of how, on a micro level, staff, including the staff who believe they’re at our service, are exercising their power more than they should be.

Power dynamics, for clarity’s sake, cannot easily be eradicated. Nor am I absolutely sure they should be. However, those in positions of power should be extra conscious of their position. And especially when it comes to situations in which they believe they have every rhight to make decisions for another person, such as when I got dragged to my room and when the staff decide another resident cannot have a large cookie (but said staff and I can).