Asserting My Rights

Posted on by Astrid

Hi everyone. Yesterday’s WordPress daily prompt was interesting. It asked us to explain what freedom means. I was originally inspired to write a post about human, civil and disability rights as they apply to my situation, but got distracted by family matters.

After last week being dragged to my room by both arms by two staff for the crime of being in the living room outside of my allocated one-on-one time and appearing (slightly) in distress, I decided to contact the client confidante on involuntary care. I remember writing about the Care and Force Act when it was just being introduced and being offended at the fact that it applies to anyone receiving care due to an intellectual disability (including acquired brain injury) or neurocognitive disorder (like Alzheimer’s, Huntington’s, etc.), not just institutionalized people. Like, under the old law, you had to be detained in an institution first before anything could be done against your (or your guardian’s in the case of being incapacitated) will. Now even those still living independently can receive “involuntary care”. And just for clarity’s sake: “involuntary care” is a euphemism for anything being done against your will, including being locked in or out of a room, forced medication, etc. As an example, if someone with dementia constantly leaves the stove on, they can be involuntarily locked out of the kitchen. Yes, even in their own homes!

However, after speaking to the confidante, I realized the Care and Force Act isn’t a free pass to do as you please if you happen to be a care provider. In fact, I’m now pretty sure that it’s indeed giving the client more rather than fewer rights, at least if they (or their guardian) knows how to assert those rights. And I know now!

Yesterday, the client confidante came by to discuss last week’s incident with me. I had given both staff involved one chance to talk it over with me before. The one leading the “involuntary care” wouldn’t budge and told me she’d talked it over with the behavior specialist, team leader and my assigned staff. She kept claiming forcing me to my room was in the other clients’ best interest. I learned yesterday that the Care and Force Act isn’t about best interest, but about “significant disadvantage”. This means that someone (either the client involved or someone else) has to be at risk of suffering significant harm (in any form, including psychological) if the “involuntary care” isn’t provided. It also requires that “involuntary care” be the last resort. In this case, the staff asked me verbally to go to my room twice, then threatened to ask her coworker to “help” then gestured to her and then they dragged me to my room. That’s not a matter of last resort!

The other staff involved used to be one of my most trusted staff. She initially blamed her coworker for forcing her into a quick decision, until I learned that they’d talked it over before I even went into the living room. Then she finally half-heartedly apologized.

This incident, however, was only the final straw again. After talking to the client confidante and being informed of my rights, I feel that a can of worms was opened of things that staff (used to) do against my will.

For example, this home is locked as a measure of “involuntary care” for two fellow clients at risk of eloping. This is in itself a questionable measure, but the thing affecting me is my being given a black-or-white choice between the door being opened at every hint that I want to leave or my not being allowed to leave the home without explicit permission at all. A similar thing is staff constantly telling me they aren’t allowed to force me into activities as an excuse to lay back at my every hint that I don’t want to do a certain activity.

Another example is the client portal with my records. I have requested access to it multiple times but the question has always been flat out ignored.

I called the confidante this morning requesting that I be allowed to E-mail her with my further concerns/questions. I did so this afternoon. Earlier this evening, fear hit me hard. What if the powers-that-be decide to give me a choice between consenting to whatever they please and being kicked out? This happened once in the psychiatric hospital and well shotgun consent but they got it.

Same when the social worker threatened to declare me incapable of decision-making and make my parents my guardian unless I signed application forms for a home everyone should’ve known I didn’t meet the criteria for. I sent the confidante another E-mail this evening asking whether the institution could legally do this and, if so, whether there’d be any chance that my parents or sister would be appointed as guardians rather than my wife, especially after our divorce.

The confidante will E-mail my support coordinator asking her to schedule a meeting between her, the behavior specialist and me with the confidante leading the process. She told me I’m allowed to file a formal complaint after that. I’ll give it some thought, but that causes me intense fear too. After all, even if no-one can legally threaten me with forced discharge or guardianship, that doesn’t mean they won’t try.

Fear (Or Another Four-Letter F Word)

Posted on by Astrid

Fear. I’ve used this word as a starting point for my writings many times. The idea comes from Mari L. McCarthy’s journaling prompts. The idea is to pick a four-letter F word and write about it or use it as a prompt. Well, I’m doing that now, but I doubt I’m actually going to write about fear. I honestly don’t know what to write at this point and am not feeling anything in particular. That is, I guess I “should” be feeling something, but I don’t know what. Alexithymia. That’s what I believe this is called. Any emotional state for me is “good”, “bad” or “neutral” like right now. I don’t ever feel totally relaxed I believe. There’s always some level of stress or anxiety or fear in my body or mind.

My movement therapist tries to tell me that my body needs to get used to the feeling of being relaxed, because due to my early childhood trauma, it never learned to trust this feeling. That makes some sense, in that I almost always feel like I’m on high alert even when I’m half asleep. Is that even possible? And if so, isn’t it just normal? Do I even know what “normal” is, being that I’m autistic and otherwise neurodivergent, multiply-disabled and a trauma survivor? I doubt it. But if I’ve lived my life like this for nearly four decades, is there any way of changing it? I hope there is, because this feeling of always being on high alert is exhausting.

This is another freewrite I originally typed up in Google Keep, then finished here.

Brave Choices

Posted on by Astrid

A few weeks ago, I was in the mood for writing but didn’t know what about. I downloaded Google Keep on both my PC and iPhone and just started writing based on a prompt I saw on the See Jane Write website. I had never heard of this site. The prompts for the month of November were all two words long. The prompt I used was “brave choices”.

I doubt I’ve ever made a brave choice. Most of my major life choices were made out of fear or avoidance rather than courage. Either that or they were really other people’s choices I didn’t rebel against, or not well enough.

For example, my choice to live independently, wasn’t really my choice. I was pressured by my parents into saying this was my goal after completing independence training and, once everyone except for my parents agreed it wasn’t a realistic outcome, the pressure had increased to the point of being unavoidable.

Similarly, my choice to live with my wife, wasn’t really my choice either. She wanted it, but hadn’t realized all the complcating factors, like my substantial care needs. She had good intentions, mind you, thinking our love would conquer anything. It didn’t. Thankfully, I was able to make the choice to go into the care facility in Raalte before our relationship suffered irreparable damage.

If there’s one choice I made in my life that could be considered brave, it was this choice. My parents and former professionals would likely say this choice was made out of fear too. They might have been right. Maybe, if I’d been truly brave, I’d have been able to organize my own care whilst living with my wife. Then again, now that we live separately, neither of us wants to live together ever again.

I still wonder whether I could improve my life if I didn’t make decisions out of fear or avoidance anymore. I mean, the reason I rarely try out new skills of independence, is fear, namely the fear that my staff will always expect me to possess an ability I’ve shown once, as well as other related or even unrelated abilities. This fear isn’t unfounded, but it’s holding me back more than it should.

Overcoming Negative Emotions #AtoZChallenge

Posted on by Astrid

Hi everyone. I’m really struggling and honestly, even though it’s past 10PM, I haven’t even completely decided on a topic for my letter O post in the #AtoZChallenge. I did a quick Google search for personal growth topics and the only one with an O I found, didn’t even have an O as its main first letter. It was “Overcoming fear and anxiety”. Then I realized that “obstacle” starts with an O so if we’re rebranding it as “Overcoming obstacles to mental health”, the main word does start with an O. Let’s go!

The topic of overcoming negative emotions and moods that are obstacles to mental health, ties in with many other general self-help topics. After all, many things that help people overcome mild to moderate symptoms of anxiety and depression, also help people feel better overall. These things include:


  • Mindfulness: being aware of your thoughts, feelings and actions without judgment.

  • Gratitude: focusing on the things you do have rather than the things you don’t.

  • Physical activity, including something as simple as a walk, but also running and other more intense exercise.

  • Healthy and balanced eating habits (yes, that includes the occasional treat!).

  • Making sure you get enough proper quality sleep.

  • Spiritual or religious practices, such as prayer, spells or meditation.

  • Contributing to your community.

  • Distracting yourself by engaging in a hobby, such as reading or crafts.

More specific practices that could help according to some are sitting with feelings, putting your problems into perspective by thinking that it could be worse, and forcing yourself to smile. Yes, I seriously got these from a handout in dialectical behavior therapy (DBT), a therapy approach applied to an increasing number of mental health issues. You’d be right if you thought I don’t think highly of these ideas. That is, I either focused on the wrong aspect of the teaching and the bigger picture was different, or these people are indeed horribly invalidating.

One thing that I did get from DBT that might make a tiny little bit of sense, is opposite acting (hey, another O). This means that you do the opposite of the immediate impulse your feelings and thoughts trigger. For example, if you are feeling depressed and your impulse is to lie in bed and isolate, DBT instructs you to actually go out and meet people. This is probably where the forcing yourself to smile comes in. Facing your fears is also a way of acting opposite to the emotion and this is, when done gradually, actually effective in treating mild to moderate anxiety.

Everything Will Be Okay… #SoCS

Posted on by Astrid

This week’s prompt for Stream of Consciousness Saturday is “wish”. What a timely prompt, as we look back at 2024 and look forward to 2025. I don’t usually have any new year’s resolutions, like I say. Rather, I call them “hopes”. They’re just the same, like I say every year, but calling them hopes rather than resolutions gives me an excuse not to think about them again until the end of the year. Then, if I didn’t make any happen, I could say they were just hopes. Like wishes, they feel a bit devoid of reality sometimes.

I mean, for 2025, most people could wish for world peace. Not gonna happen, baby! In fact, as I read the news recently, I’m more and more scared that even in a country that hasn’t been at war in almost 80 years, we won’t see a full year of peace.

And now I’m scared that by voicing that fear, I’m single-handedly making it happen. That’s my twisted mind playing tricks on me though.

I do wish for there to be many more years in which this country can live in peace. I know that, in a similar way to what I said in my previous paragraph, my constantly saying that “everything will be okay in 2034”, when the “2034” aspect of it was based in a twisted way on the idea that World War III will start then, might be tempting fate. Thankfully, I don’t believe in manifesting in this sense. Besides, don’t many faiths believe in reversal of good and bad? Like, in the Christian tradition, there’s this thing about the first who will be last. Either way, I hope and wish that my twisted words about 2034 will indeed be true and everything will be okay.

I Fear…

Posted on by Astrid

I fear not. Not really. Snakes nor spiders, heights nor depths. I fear not. Not exactly. Darkness nor monsters, flying nor driving. I fear… oh, what do I fear? Aloneness and uncertainty, pain and discomfort. And yet, I know, these are inevitable.

This post was written for Friday Writings #120, for which the prompt is to write either a prose poem, tankaprose or haibun. I chose the prose poem. I am also sharing this post with Friday Faithfuls, for which the prompt this week is “fear”.

To Freewrite vs. Free to Write #JusJoJan

Posted on by Astrid

I started and restarted this post several times. I really want to broaden my horizons in the writing department. To write more, but also to write more outside of my comfort zone. In a way, I want to experience the freedom I experienced when crafting my independently-created unicorn in the writing process too.

But, as with my crafting, in the writing department, fear is holding me back. Specifically, the fear of failure. The fear of my posts not being read, not being appreciated, getting zero likes or comments. If I don’t get any engagement, why bother blogging, after all? I could just as easily keep a private journal in Day One.

Then again, even in Day One, I censor myself when writing. Even where no-one reads my writings except for possibly my future self, I’m constantly telling myself I’m a bad writer, constantly editing out mistakes or “inappropriate” wording. Yes, I even did this with my Morning Pages back when I did those several times over the past couple of years.

Is it, however, really that I’m looking to freewrite? Or is it more that I want to be free to write? What’s the difference? Well, this is a freewrite.

However, there are other ways in which I let my censor, as Julia Cameron calls it, dictate what I can and can’t write. So many in fact that I hardly write self-growth posts anymore because these don’t get much engagement, even though these are the posts I sometimes feel inspired to write. When I am free to write, I write what I feel inspired to write even when this isn’t a huge success by externally-determined standards like my stats. And who knows, maybe it will be a success someday.

This post was written for today’s #JusJoJan prompt, which is “writing”.

The Wednesday HodgePodge (October 4, 2023)

Posted on by Astrid

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 16, 2023)

Posted on by Astrid

Hi everyone. I haven’t participated in the Wednesday HodgePodge in a while. The reason is a comment Joyce, the organizer, made about Rikkie Kolle, the trans woman who won the Miss Netherlands competition last month. Trans rights are dear to my heart, so I felt the need to educate Joyce (respectfully, of course), even though I will probably not be able to convince her that trans women are women. After this, I didn’t feel I could in my right mind participate in the HodgePodge again, despite the fact that Joyce assured me that people from all walks of life are welcome. Then today I decided to check back and the first HodgePodge’er I stumbled upon happened to be Jewish. That’s a relief. So now I feel that I may be able to join in again, given that it’s indeed not just a place for conservative Christians.

1. What motivates you to work hard?
Nothing, honestly. I am not a hard worker. That being said, if I want to accomplish something, I thrive on setting myself deadlines.

2. It’s been said “Ignorance is bliss”…is it?
It depends. Where it comes to the state of this world, a healthy balance is needed. I mean, complete ignorance will lead people to mistreat the planet and each other even more than we already are, but being completely submerged in negative news, won’t solve anything either.

I think the same goes for our daily life. I mean, I watched a video on signs of dementia a few days ago and was shocked to find out I ticked more boxes than I thought I would. Now the doctor doing the video covered the complete spectrum from entirely healthy (which I know I’m not) to end-stage dementia. I am pretty sure I’m still at a stage where I can reverse any cognitive decline I might be experiencing. In this sense, ignorance could’ve felt like bliss, but it isn’t necessarily so.

3. Would you rather be stuck on a broken elevator or a broken ski lift? Explain. Have you ever actually been stuck on either? Of the common fears listed here what’s your #1: heights-enclosed spaces-snakes-public speaking-the dark-flying.
I’d probably choose an elevator, though neither seems appealing to me. Never experienced either. Out of the common fears, I’ll choose snakes as my number one because I’m very scared of venomous animals. I can handle a non-venomous snake without a problem though, have even had a small one around my neck.

4. What’s something you like about the town or city where you live?
The institution I live in (not my specific home, of course). The rest of the town is boring.

5. Life is too short to ___.
Waste it by endless worrying. Oh now how I wish I could stop doing it.

6. Insert your own random thought here.
I haven’t shared this with the HodgePodge crowd yet, but I am soon moving to another care home. My assigned staff actually mentioned September. I havent’been given an exact date yet and won’t find out till about two weeks in advance. Fingers crossed it won’t be like the end of September, because quite frankly I can’t wait.

Getting Older, Being Happier?

Posted on by Astrid

Today’s prompt for Friday Faithfuls is aging. I used to think aging was scary. Even at the early age of four, I didn’t want my classmates to sing in a birthday song that I was growing up.

Then, a few years ago, I heard an episode of All in the Mind, an Australian psychology radio show (I listened to it as a podcast), about aging. In it, people were discussing the positive aspects of getting older and mentioned that, for people who got to age ninety or beyond, the happiest age they’d ever been in their entire life was 82. How they got to such an exact number, I don’t know, but I’ve since clung to that number. It helped that my assigned day activities staff at my old care home always said she was going to live to age 93. Since she is eleven years older than me, we had this inside joke about the two of us meeting up near the end of our lives when she was 93 and I was at my happiest ever, ie. 82.

There actually is, or so the people on the show said, some logic behind older people being happier than younger people. The reason is the fact that the amygdala, one of the parts of the brain responsible for registering fear, shrinks as we age.

Also, many people become more resilient as they experience more of life. Whether this is a biological, social or psychological thing or more likely a combination of all three, it does mean older people may be generally happier than those in their twenties and thirties, for example. Borderline personality disorder, also known as emotionally unstable personality disorder or emotion regulation disorder, of which I have some traits, tends to lessen as people get older as well. This lessening of symptoms usually starts in a sufferer’s early thirties. Indeed, though I cannot say I’m necessarily happier now that I’m nearly 37 than I was ten or twenty years ago, I am generally more emotionally stable.