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

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).

Sunny Sunday (November 26, 2023)

Hi everyone. Today I’m feeling all over the place. It’s been like this for most of the week. I’ve been struggling with lots of unfamiliar staff sent out to do my support and my day schedule being screwed up for various reasons. However, I’m going to focus on the positive. I’m joining in with Sunny Sunday. Like Leigha, I am going to focus on the things I’m grateful for, from the general to the specific. I am using Maslow’s hierarchy of needs as a guide.

1. Physiological needs: Food. Particularly, the fact that we had French fries yesterday (oh wait, that’s not a need). My relatively good physical health. A roof over my head.

2. Safety needs: my financial security. The fact that my staff did try to get me a familiar staff person for my one-on-one at least part of the time (although it was after I’d had an outburst).

3. Love and belonging needs: my spouse, who phoned me this evening despite having a headache. A visit from my mother-in-law on Tuesday.

4. Esteem needs: my new day schedule, which will take effet tomorrow, giving me more time to engage in activities I enjoy. Well, technically it’s not more time in total, but the day schedule is less cut up into small parts, so I’ll have a larger time slot in the afternoon for something like polymer clay.

5. Self-actualization needs: renewed motivation for actually doing something creative. It hasn’t yet formed into something concrete, but I’m working on that.

What are you happy about?

#WeekendCoffeeShare (November 18, 2023)

Hi everyone. I have barely touched the blog lately, but it’s not because I’ve been uninspired. Rather, I’ve mostly been doing other things online. Before I abandon it altogether, I thought I’d write a post though. I’m joining in with #WeekendCoffeeShare. I’ve had my last cup of coffee for the day, but thankfully my assigned staff ordered my favorite soft drink, apple and peach-flavored Dubbelfrisss, so I’ll have that in a bit. If you’d like one too, join me. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. It’s been raining all day today and, though we were supposed to have a daytime high of 12°C, I don’t know when that was supposed to have been the case as it’s been around 7°C each time I looked at the weather on my Apple Watch. I haven’t been outside at all. I mean, I can bear the cold, but rain, yuck! I can tolerate it when it starts raining midway through a walk, but when it rains as I leave the house, I usually turn right around. Consequently, I didn’t meet my movement goal on my Apple Watch today at all. In fact, I’m pretty sure I hit an all-time low, but frankly, I don’t care.

The rest of the week, though we had some rain, it wasn’t constantly pouring. Though some days I needed to get out my winter coat, most days the daytime temperature wasn’t too cold either.

If we were having coffee, I’d cheat a little and tell you all about the meeting I had last week with my assigned staff, support coordinator, behavior specialist and my mother-in-law. Okay, who said you can only talk about the past week during a weekend coffee share? Maybe I did. Anyway, the meeting started out with my assigned staff complimenting me on how I do accept men and unfamiliar staff now. This rubbed me the wrong way, as the day prior he’d pretty much given me no choice, so what was I to do? I’ll see tomorrow whether they’ll go the full length and assign me a male staff for my ADLs (which is a big no for me), as then the female staff who normally always assigns me temp workers is working the morning shift with a male temp worker. Said temp worker is familiar with everyone here, but I am honestly quite sure she’s going to assign him to me for my morning routine anyway. Let me just say I’m going to throw a big hissy fit if this happens.

Other than that, the meeting went okay. We talked about my day schedule, which is okay in terms of how many hours of support I get but far from ideal in terms of how it’s cut up into small blocks. Since my ExtraCare (one-on-one) funding hasn’t been approved yet for next year, we’re waiting to see what happens to that to change anything. I’m pretty fearful the Care Office doesn’t consider every single moment the staff spend with me as ExtraCare, as, well, it isn’t, but the manager does. Oh well, we’ll see.

We also talked about my wish to start therapy again for my trauma-related symptoms. Upon further thought, I realized I need to work on stabilizing first before I start EMDR or whatnot. The behavior specialist is going to write an application. I am also going to work with my assigned staff on my signaling plan, which details how I can best be supported during each phase of emotional (dys)regulation.

If we were having coffee, lastly I’d share about my dietitian’s appt on Wednesday. It went pretty well. I am currently at a healthy weight and within the weight range I agreed upon with her. She did finally admit she doesn’t know why I’m not gaining weight when I’m having quite a lot of food in excess of my food plan. I honestly currently have far too many other things on my mind to care about this too. I mean, yes, I’m scared, but I’m scared for a lot of other reasons too.

How have you been?

October 2023 Reflections #WBOYC

Hi everyone. It’s the last day of the month and this means I’m reflecting on the past month’s happenings. As usual, I’m joining in with What’s Been On Your Calendar? (#WBOYC).

First, I’m finally going to share the polymer clay unicorn I crafted on September 30. Okay, that’s not technically the past month, but I didn’t fully finish it and take a picture till October 5.

My spouse joked that, judging by its colors – fuchsia, yellow and blue (the blue is called Peppermint, don’t ask me why) -, it’s typical of a specific music scene from the nineties. The staff who helped me craft this unicorn, is only slightly older than me, so she understood.

I haven’t really been crafting with clay much over the month of October. I did though help cook dinner twice. I also made a few smoothies.

I also did a good amount of walking, although I didn’t meet my movement goal every single day this month. I blame the rain, because the one day I didn’t meet the goal, it was raining almost constantly. Besides walking, I went swimming once.

My mother-in-law visited me three times this month and my spouse came by each week. My sister had originally wanted to come by this Sunday, but I prefer not to see her or my parents in the institution. Instead, my spouse and I are going to see them and my parents at Christmas.

Mental health-wise, the month has been quite good, truthfully. I mean, I’m still adjusting to my new care home and it’s October, which is a hard month for me each year. Taking this into consideration, however, I can’t complain. I am intensely grateful for the fact that most staff go out of their way to accommodate me. Initially, I was told by some that I’d be assigned the temp worker almost by default, which set me off because that was exactly what happened at my old care home and, given my attachment issues, I struggle with this. I spiraled into a bad crisis for this reason last week. Thankfully though, the staff now try their best to assign at least a somewhat familiar staff to me if they have to be a temp worker after all.

With respect to my physical health, I am happy to report I didn’t lose any more weight. In fact, I gained a few pounds. It wasn’t like I definitely couldn’t lose any more weight for my health, but I would’ve felt concerned had I lost more weight, given how much I ate over the past month. I am now within the weight range I agreed upon with my dietitian rather than slightly below it, so I’ve decided I can no longer afford as many treats as I used to consume. Yesterday, I convinced my assigned staff to add my food plan to the manila folder of important information that’s on my table in my room. After all, staff would often hand me a cookie (or two) without even thinking about it with each coffee break, despite the fact that my food plan has one only with my evening coffee break. I am due for weigh-in tomorrow morning again. Fingers crossed I won’t have gained significantly.

Hello Monday (October 30, 2023)

Hi everyone. Oh my, I’ve once again been neglecting my blog. I honestly wouldn’t know why, since over the past few days I’ve felt pretty good. I guess I’ll blame the time of year or something. Anyway, today I’m sharing an update with you all for Hello Monday.

Saturday was a very busy day. It was mostly in a good way, but it still left me feeling overwhelmed. A staff made pancakes for lunch, which were absolutely delish. In the afternoon, I sat down with one of my staff to discuss some of the important life events I want all of my staff to know about. This was intense, as you can imagine.

In the evening, I helped another staff cook macaroni for all of the residents and staff. We started out by cooking the mince, then adding onions, garlic and peppers. We thankfully didn’t have to chop the other vegetables. I turned out to be right about the amount of macaroni we needed. Thankfully, the staff’s estimate had been higher, so we had leftovers rather than not having enough. Unfortunately, neither I nor the staff thought of freezing the leftovers, so I’m afraid they’ve gone to waste.

I had a difficult night with nightmares and interrupted sleep, but it wasn’t as bad as it could’ve been several years ago.

On Sunday, my spouse visited me. We went to Starbucks a second time and, after another caramel frappuccino and a donut for me because the pumpkin spice lattes were sold out, I had to agree that my spouse had been right all along that Starbucks is a waste of our money. I mean, the donut was worse than supermarket ones and truthfully my iced coffee was worse than the one I’d had at McDonald’s several months ago, which had initially made me decide I don’t like iced coffees. However, the problem with that one wasn’t the iced coffee itself but the paper straw. This was an issue now too, of course, but the frappuccino definitely was quite bad.

We also went to Aldi to shop for groceries. I only bought crunchy muesli, since the other things I wanted I’d asked my staff to order from the delivery service.

Sunday evening, of course, it got dark at around 5:30PM already because of the end of daylight saving time. I stayed indoors and watched some TV. We’ll have general elections on November 22, so I watched a humorous political quiz-like program in preparation for it.

Last night, I slept better, thankfully. I went on several walks today. On one of them, I decided to take some fall-themed pictures. The one below was taken a short distance from my care home.

We also visited the petting zoo once again and I took a picture of the guinea pigs.

This evening, I spent my allocated activity time claying with my one-on-one staff for the moment. We both created a flower, though hers looks more like a starfish in shape and due to the colors we used, the center is hardly visible. I usually get some help with my crafting, but this time I loved being able to craft the flower pretty much independently while my staff worked on hers.

The Wednesday HodgePodge (October 18, 2023)

Hi everyone. It’s Wednesday once again, so time for the Wednesday HodgePodge. Here goes.

1. What’s something small you tend to sweat even though you know you shouldn’t?
Hmmm, I tend to get nervous and frustrated about a lot of things that are probably minor to others, but to say they’re things I “shouldn’t” sweat, feels a bit invalidating. I mean, I could choose the situation where staff randomly switch up who is going to support me and as a result a staff I didn’t expect shows up in my room. This often feels minor to the staff, but honestly I think they don’t know what it’d be like to depend on an almost countless number of random staff for your everyday needs.

2. October 17th is National Pasta Day…do you like pasta? What’s your favorite? Cooked at home or eaten in your favorite Italian restaurant? How often do you make/eat pasta?
I love pasta. My favorite is either penne pesto or macaroni Bolognese. I know, in the U.S. it’s spaghetti Bolognese but even that isn’t originally Italian, as it’s a combo of Naples’ spaghetti and Bolognese sauce. The way I understand it, in Bologna they eat their recipe only with tagliatelle.

I enjoy my pasta mostly home-cooked. At my old care home, we’d get home-cooked meals on weekends, which was awesome. Here, we get meal delivery service meals each day, but I already agreed with one of the staff that I’ll be helping her cook macaroni Bolognese on the 28th.

3. Do you consider yourself a spontaneous person? Explain.
No, not at all. And usually when I try to do something spontaneously, it means I’ve forgotten something else and I end up majorly messing up.

4. Who are some of your heroes? Tell us why.
Do people who are no longer alive count? In that case, my paternal grandmother, of course. Some of the autistic activist pioneers, like Mel Baggs and Cal Montgomery too. I admire their work in standing up for their and all of our rights to an actually meaningful life.

5. Let’s wrap it up with something light…Taylor Swift…are you a fan? On a scale of 1-10 how much so? (1=who’s Taylor?, 10=a true Swiftie, seen her in concert more than once). If you’re a fan what’s your favorite T. Swift song?
Uhm, 2 I guess. I’ve heard of her. I’m not a fan, but it’s not about her. The thing is, I’m not a pop music fan at all. In fact, I rarely listen to music except for soothing instrumental music when trying to fall asleep. I honestly couldn’t name any of Taylor Swift’s songs if I had to.

6. Insert your own random thought here.
I want to give a shout out to the app Be My Eyes and its AI-based image description component Be My AI. Until this was introduced several weeks ago, all we blind people had were Seeing AI, Envision AI and some other apps that did rather generic image descriptions. Be My AI, on the other hand, does a rather detailed description of images. I can’t copy an image description here because for some stupid reason I can’t get it to write its descriptions in English, but let me just say it’s great.

10 on the 10th for October 2023: A Fall-Themed Would You Rather

Hi everyone. Today I’m joining Marsha for 10 on the 10th, for which the theme this month is a fall-related would you rather. Here goes.

1. Would you rather soak your feet in pumpkin innards or in creamed corn?
Ew to both. But if I had to choose, creamed corn it would be.

2. Would you rather dance with a scarecrow or play poker with a mummy?
Dance with a scarecrow. I can’t play poker at all and, while I can’t really dance either, that’s not really something I care about.

3. Would you rather eat an apple dipped in caramel or a pumpkin muffin iced with cream cheese frosting?
Apple. I’ve never had a pumpkin muffin and am not sure I like it, but I do love apples and caramel.

4. Would you rather dress as a clown or as a monster for an entire week?
Monster. That’s more my style and I am more of a monster than a clown anyway.

5. Would you rather rake leaves or burn marshmallows?
Neither, truthfully, but if I have to choose, I’ll burn marshmallows, because at least I can enjoy eating them afterwards.

6. Would you rather smell like a bonfire or like a cinnamon stick for an entire month?
Cinnamon stick for sure. I can’t stand the smell of bonfires.

7. Would you rather watch a scary movie or go ghost hunting?
Go ghost hunting. Like I said last week, scary movies give me nightmares. So probably does going ghost hunting, but oh well.

8. Would you rather stay overnight in a haunted house or a cemetery?
A haunted house, I guess. I don’t actually believe in ghosts, so I’d prefer the comfort of an actual bed to sleep in even if interrupted by ghostly sounds over staying in a cemetery all night.

9. Would you rather eat pumpkin pie or apple crisp?
Apple crisp. I’ve only had pumpkin pie once or twice and vaguely remember not liking it. Apple crisp sounds delish to me.

10. Would you rather be in a pie eating contest or a pumpkin carving contest?
Pie eating contest. I mean, both are equally unhealthy for me, in the sense that I’d probably cut myself in the carving contest and overeat to the point of being sick in the pie eating contest. For this reason, I’ll go with what at least gives me some joy and that’s eating pie. Unless it’s pumpkin pie, of course.

The Wednesday HodgePodge (October 4, 2023)

Hi everyone. It’s been a few weeks since I participated, so I’m joining in with the Wednesday HodgePodge once again. Here goes.

1. What’s something that scares you?
Too many things to mention, although I’m not one to have many classic phobias. My main one is toxiphobia, a fear of poisons.

2. Do you care where the food you eat comes from? To what degree?
Not really, honestly. Not that I get a say in where my care home food comes from in terms of the supermarket they order from – it’s some type of countrywide supplier specifically for care agencies. However, it’s not like I’d care much even if I did have a say. I do care about having a say in the specific foods I get to eat, which thankfully I have. When it comes to organic or not and the country my food originally comes from, I honestly am too lazy and stingy to care even when I go to the brick-and-mortar supermarket in the next town.

3. What’s something you wish you’d spent more time doing when you were younger?
Be creative. I did love writing as a child and spent a good amount of time on that, but I definitely wish I’d spent more time on other creative outlets.

4. Let’s play autumn this or that….pumpkin spice or apple cider? Corn maze or haunted house? Horror film or Hallmark movie? Blanket or sweatshirt? Watch football or watch the World Series? Foliage-red, yellow or orange?
Pumpkin spice for sure. Corn maze, though I don’t care for it either (but I hate haunted houses). Neither on the movies, but a Hallmark one if I have to choose, since the reason I hate haunted houses is because I startle extremely easily and also I don’t want nightmares. Is the blanket supposed to go onto me in the same way as a sweatshirt? Then I’ll choose a sweatshirt because it’s easier to keep in place while I type. Neither on the sports thing. That is, I’ve never heard of the World Series but assume it’s sports-related too and I never watch sports. All three colors are beautiful.

5. This time last year where were you and what were you doing?
Such an intriguing question especially today. October 4, 2022 was my last full day in the care facility in Raalte. Most of my furniture was being moved to the intensive support home (my now old care home) that day, as Raalte’s transportation person was off on Wednesdays (something thankfully my staff did realize beforehand, unlike with the recent move). Can you imagine I lived in three different care homes over the past year?

6. Insert your own random thought here.
October 4, 2023. I’ve been living in my current care home for just over two weeks and am beginning to consciously or unconsciously erase my connection to the intensive support home. Honestly, I feel awful when a temp worker tells me he knows me from there. That being said, it’s not just because it could hardly get worse than there, that my current home feels like a better fit.

The Wednesday HodgePodge (August 23, 2023)

Hi everyone. I’m joining the Wednesday HodgePodge once again. Here goes.

1. What’s your earliest memory?
My third birthday. My paternal grandma brought me a doll from Berlin and my father taught my sister and me the German word for “doll” (“Puppe”). My sister and I, of course, laughed really hard about this, as “Puppe” sounds just like the Dutch verb for “poo”. The doll, by the way, is named Roza, because my father also said Rosa (but then again, as a child I had no clue how to spell it) is a German name.

2. What’s something about you today that the old you would find surprising?
The fact that I live in an institution. Until I was about 25, living in an institution was my worst nightmare.

3. Do you like to fish? Are you a fish eater? Favorite fish (to eat)? Favorite way to prepare fish?
I’ve only been fishing once and found it intensely boring. Then again, I can’t see so that takes away what little fun I imagine there is to fishing.

I do like fish, but usually just the once with the not-too-distinct flavor. The only exception is tuna, which I love and would probably be my favorite fish to eat. When my sister turned vegetarian and showed my parents info about the unethical consequences of tuna eating, they for a while refused to buy it. I got really upset.

4. What’s your biggest first world problem?
I’m not sure whether my unsuitable care home counts as a first world problem. I guess it does, since most disabled people in developing countries don’t have a choice where they live at all. Neither do I at this point, in the sense that I know next to nothing about my future care home and am told that since I’m moving anyway it’d be pointless to give me more info. I have a post scheduled for tomorrow on this topic. In any case, I’m still fortunate in many ways I guess.

5. What one word would you use to describe your year thus far?
Chaos.

6. Insert your own random thought here.
I almost broke my record of active calories burned on my Apple Watch today. Honestly, I think relatively speaking I already broke it, since my last record dates from September of last year and I weighed 12kg more than I do now, so burned off more calories with the same physical exertion. I still need 20 exercise minutes to break my exercise record (which I set on the same day), but I won’t do that. Those 15 active calories I still need to burn for my movement record should be doable though. Today, unlike the time I set my old record, I did a variety of workouts: walking, swimming, the stationary bike and dancing.

How Sensory Seeking Manifests in Me

As those who visit my blog regularly will know, I am autistic. My assigned staff put “highly sensitive” rather than autistic on my basic info sheet. This isn’t necessarily incorrect, but it is definitely incomplete. Not just because autism encompasses more than sensory processing challenges and because the hyped-up term of “highly sensitive” doesn’t come close to describing my level of overload, but also because in certain ways, I am not hypersensitive at all. Today, I want to talk about the ways in which I am, in fact, a sensory seeker.

The main aspect in which I’m a sensory seeker, is reflected in the way I approach food. I love love LOVE spicy food. I also love crunchy food. I can’t stand mash, because that is about the polar opposite of both. Honestly though, I find the texture matters more than the flavor, since mash didn’t get better with lots of black pepper on it and I can handle bland yet crunchy foods.

I also chew on hard candy. Like, I’ve tried sucking on it, but I really can’t manage to do that for more than a few seconds before I need to break the candy. Another example, but I’m not sure whether this is sensory seeking or lack of proprioception and/or coordination, is the fact that my staff tell me my spoon always clanks against my teeth quite loudly. I also realize now that drinking my coffee quite hot is probably a sign of being a sensory seeker.

With the sense of smell, I have a love/hate relationship. I love my essential oil diffuser, but don’t usually wear perfumes and can’t really stand anyone else wearing them.

In the tactile sense, I’m definitely a sensory seeker. This doesn’t mean I like all kinds of touch. I mean, I can’t stand it when people unexpectedly pat me on the back. Truthfully though, it should really go without saying that you should never touch another person without asking them first.

However, I love tight hugs, or used to before I broke my collarbone in 2019, which never properly healed. I also love to be rough when brushing my hair and am probably a bit rough when brushing my teeth too. When I wear my hair in a ponytail, it has to be tight too. And my shoelaces can’t really be tied too tightly. And yes, my spouse took up the challenge, only to tell me that, even though I didn’t think they were too tight, they actually were.

I of course need to mention my weighted blanket here too. It is 12kg, which is between 20 and 25% of my body weight. That’s on the heavy side as far as I’m aware. Of course, I got it when I still weighed nearly 20kg more than I weigh now, but then I’d often end up adding another weighted blanket on top of it.

Another aspect of sensory seeking I need to mention is being in constant motion, even if it’s small movements with my fingers or toes. I am not diagnosed with ADHD, though sometimes I think I could have it. I wasn’t extremely hyper as a child – in fact, my parents would describe me as a quiet child. However, I was definitely jumping onto lots of things. I no longer do this, but mostly because I can’t due to my decreased mobility. Now that I think of it, honestly I’m pretty sure that my need to walk a lot, is also a sign of sensory seeking and/or hyperactivity.

With respect to the sense of sound, I’m not generally a seeker. I do listen to soothing music on my music pillow when trying to get to sleep, but that’s it. I can’t stand background noise. Like, some staff suggest we have music on in the background while we play games, but I really can’t concentrate then.

Lastly, of course, is the sense of sight. I’m blind now, obviously, but when I was younger, I still had some sight. I definitely was a sensory seeker when it came to the visual modality. The most striking example is the fact that I’d often make shadows on my desk with my hands and look at them.

There are many other ways in which I express sensory seeking, but you get the idea. All this being the case, don’t discount my sensory overload just because I can be a seeker in other circumstances.

My Random Musings

Also linking up with Senior Salon Pit Stop.