Accepting the Extent of My Disabilities

Posted on by Astrid

Hi everyone. Yesterday someone in one of the online communities I’m part of shared about learning to use a white cane because of vision loss in addition to an acquired brain injury. The person summed up all the impairments the brain injury had already caused. This got me wondering how he’d be able to use a white cane, so I asked him. I won’t go into the conversation, but it reminded me how significant my impairments and particularly the combination of them are.

For example, I can’t use my white cane in the proper way without losing my balance. This isn’t even a new or semi-recent thing or so my best friend says: when I still tried to properly use my white cane over fifteen years ago, I fell far more often than I do now.

It doesn’t mean there’s no decline whatsoever. After all, everybody over 30 declines and I’m not one to regularly exercise other than by walking either. However, the decline is not as significant as I think (and have been thinking for, well, over fifteen years already) it is.

My best friend also says I used to have far more meltdowns at least in public than I do now. This may be related to the fact that now that I live in an institution the general public no longer has to put up with my meltdowns as much. However, I have an inkling this is not the full story, as I remember having daily meltdowns in the psych hospital, usually lasting several hours. I still have meltdowns regularly, but truthfully not nearly as often as I used to.

One of the things that may’ve contributed to my feeling that I’m declining as well as to my having fewer meltdowns, is the fact that I can no longer mask as well as I used to. Oh well, is it masking when my pushing through leads to severe aggression and other challenging behavior? I don’t think it is. Is it more that I can no longer pretend to be independent? That’s probably a better word choice.

I still try to push through more than I probably should, honestly. I have a very strong inner critic telling me that less support is always better, after all. Moreover, it tells me that I have absolutely no right to asssert myself because I’ll always be a burden regardless.

A few weeks ago, I had an experience that validated me in thinking that, well, I may be seen as a burden but that’s not my problem and it doesn’t mean I have no rights. I was trying to get onto care allowance (a compensatory payment for the cost of health insurance) now that I’m divorced and officially low income. However, as it turned out, my ex-wife was still listed as my partner in the system, so I had to call the relevant service. Well, the process of getting connected was already quite frustrating. Once I was finally connected to a human, it took three transfers for the right person to get on the phone. He then informed me that he couldn’t solve the problem right away but would be calling back later. I assumed correctly that he’d call me anonymously, so there wouldn’t be a way for me to reach him if I’d missed the call. Thing is, I need to use headphones when making phone calls because I cannot properly hold my iPhone to my ear and the speaker’s rather unreliable when the phone’s on my desk. However, since I don’t wear headphones when not using my phone and it takes some time for my headphones to connect, I feared he’d reach voicemail by the time I’d had a chance to pick up. I explained this, saying I have a disability and need to use headphones without going into too much detail about the why of it. He came up with the solution of calling a second time immediately if he was redirected to voicemail to give me more time. And guess what? It worked!

Spoiler Alert: Disabled People Are People!: Reflections on Involuntary Care

Posted on by Astrid

Hi all. As those who read my most recent post know, I had my Care and Force Act meeting yesterday. For those not familiar with this, this is the law governing when people with intellectual disability, dementia or brain injury can be subjected to “involuntary care”, such as restraint, seclusion and forced medication but also when restrictions can be placed on how a person lives their life. For example, it regulates the circumstances under which people can be prohibited from using electronics.

My own Care and Force Act plan only relates to measures like restraint, seclusion and forced medication. These three have more strict guidelines than other measures like prohibiting someone from using electronics. With these, it’s always “involuntary care” regardless of whether the person shows resistance or not. This is actually a reason I recently found out that my antidepressant prescription is “involuntary care”, because it does not follow medical protocols on when it should and should not be prescribed. This does not mean I will go off of it, by the way.

The meeting with the client confidante and my home’s behavior specialist went pretty well. I attended it without a staff, because at the last moment the staff who could attend it with me was switched and I didn’t like the one they assigned me.

The confidante however was quite critical, which I liked but the behavior specialist didn’t. There are three plans involving restrictive measures, all within the stricter category: two for restraint and one for seclusion. The one on my antidepressant hasn’t been written yet. I had E-mailed the behavior specialist in advance with a lot of feedback on the plans. Particularly, they were far too generic. For example, it is written in them that I can be restrained when in “high distress” and that this will prevent me becoming physically aggressive towards staff. The first part of this statement is horribly nonspecific and the second is frankly wrong: I actually rarely if ever become physical when not being restrained and the order is reversed, in that I am restrained first for verbal irritability and this leads to furhter aggression from me.

The behavior specialist got quite uncomfortable with the critical comments from the confidante. After all, she pretty much told it like it is: if I were to file a complaint, there’d likely be several grounds for it being upheld. She also quite clearly said that restraining or secluding someone without a proper plan is deprivation of liberty. I liked this validation, because it shows that well, just because I’m a client doesn’t mean the staff can do as they please. Actually, when the behavior specialist claimed this side of the home being locked isn’t for me (which I frankly believe isn’t true), the confidante quite bluntly suggested I get a key. This is unrealistic in my opinion, but it does show that staff can’t randomly be locking people in just for the sake of it.

Today, I had a horrible argument with the staff who’d been initially assigned to attend the meeting with me. It wasn’t even about me: another resident had eloped and she was threatening to refuse him access to his electronics after he was taken back here. I didn’t actually want to go into this client’s situation, as it’s honestly none of my business. All I wanted to do is raise awareness of the fact that just because someone is intellectually disabled doesn’t mean they don’t get to live their life as they want. This particular staff has a rather ableist attitude towards care, literally having told me that she gets to decide most things about me because she’s the staff. The reason for this comment was my telling her that we were going to take a shorter walk than she wanted. This is another example of the not-so-strict measures, because deciding that I have to take a certain walk is restricting me from living the way I want to live. Not that this particular situation would’ve been one I’d make a fuss of if not for the fact that I was literally in pain and had already been going on two longer walks that day.

Unfortunately, the Care and Force Act is a bit vague in terms of what does and does not count as involuntary care. For example, a home’s front door being locked at night doesn’t necessarily count, because it is not disproportionate and affects every client equally. That being said, there is some push towards open doors and I can see why. After all, like I said when a staff used as a reason for the front door being locked at all times that regular front doors are locked too, regular house residents have a key.

After digesting the meeting, I E-mailed the behavior specialist that I understand that it takes quite a drastic attitude change to actually fully validate this home’s client’s rights and that I don’t expect this to happen overnight (or before I move out of here). I however do want to make sure that we’re making progress and at the very least it doesn’t get worse.

Care Professionals’ Behaviors That Anger Me

Posted on by Astrid

Hi everyone. Today in her Sunday Poser, Sadje asks what angers us about other people’s behavior. I’m going to list some things that anger me about care professionals’ behavior specifically. Here goes.

  1. Care providers claiming they have clients’ best interest in mind. Of course, sometimes they do, but in reality, they have many more people’s interests to take into account. It isn’t feasible for a care provider to only have the client’s best interest in mind, of course, because well the client isn’t alone in this world. That’s life for everyone. But not acknowledging that it’s worse in care settings, is one reason staff continue to abuse their powers.
  2. Assuming clients are manipulative. I’m truly unsure of how this belief comes about. I have an inkling that most people in positions of power are at least somewhat manipulative themselves and it’s projecting their own actions onto others that causes them to assume clients are manipulating.
  3. Staff ignoring impairments that aren’t glaringly obvious. In my case, this is everything except for my blindness and, well, even that gets ignored at times.
  4. Professionals deciding what a “meaningful life” is for clients. There’s this support method for people with challenging behavior called Triple-C. In theory, it looks great, because the focus is on clients’ needs for trust, connection and a meaningful life rather than on the challenging behavior itself. However, it becomes harmful when it’s misused by staff to dictate what a meaningful life is like for clients. The words “normal life”and “meaningful life” are used almost interchangeably by certain people proclaiming to use this method. It’s not even wrong in itself, but it does become problematic when staff decide what a client’s priorities in this “normal life” should be.
  5. Care providers misusing the fact that they don’t scream at/hit/otherwise abuse clients as a reason why the client shouldn’t be displaying challenging behavior. I always respond by telling staff that I don’t drag them to another room when they’re annoying me either, so why do they do this to me?
  6. Care providers purposefully limiting clients’ choices just for the sake of it. I mean, yes, no-one has full control over how they live their lives, but it’s a lot worse in care settings and not because it should be.
  7. Care providers randomly invading clients’ spaces and treating the client’s space like their own home. For example, I still have to make most staff aware of the fact that they don’t get to randomly open and close my doors and windows without my permission. Yes, they can ask whether they can do this and I’ll usually give them permission when they explain why, but this isn’t their own space. Similarly, random staff blocking my way out of my room without it being a Care and Force Act agreement just because “they have to support me”, angers me to no end.
  8. Staff being overly friendly when we’ve just met. “Hi Astrid, how are you?” without even saying their name first. This is a relatively minor annoyance compared to the others, but in the intensive support home I’ve refused a temp worker entry to my room because he introduced himself as “your staff”. These are, interestingly, also usually staff who claim to like working with me even though they barely know me. They’ll ask a ton of questions but not disclose anything about themselves. Creepy!

All of these things boil down to staff not realizing (or not caring) that professionalism isn’t the same as being authoritarian. This distinction is incredibly hard to explain. For example, I’ve been to several staff’s homes and none of these staff I considered to be creepy. I think a staff who is overly businesslike can be as annoying as a staff who is overly amicable. Usually, interestingly, the bad kind of staff combine the two.

First Steps in Finding a (Truly This Time, I hope) Suitable Care Home

Posted on by Astrid

Hi everyone. It’s been a full week since I last wrote a post on this blog. This week has indeed been full. Not necessarily in that anything spectacular happened, but I’ve been hyperfocusing on the home-finding thing.

This is one reason I finally changed my tagline. I’d been annoyed at my old one for years, but could never think of a more appropriate one. Looking back, it should’ve been easy.

So here I am chronicling my complicated care-finding process. I have been looking up various options online and talking to people on Facebook. Specialist client support hasn’t contacted me yet even though they said they would do so this week. Here’s hoping they’ll contact me on Monday or Tuesday.

I haven’t spoken to the team leader or behavior specialist either. My trust is at a very low point and I’m half expecting this to go exactly like it went with my last several moves: not hearing anything for months until the powers-that-be have found a place they think they can send me to. Staff are saying I’ll have a meeting with the behavior specialist and team leader “shortly”, but they for whatever reason aren’t allowed to tell me when. One staff eventually said it’s on the 16th, but my trust is so low after all the comments that I’m not allowed to know etc., that I’m thinking he may’ve made it up to shut me up.

In the meantime, I am looking at possible new places to transfer to. I don’t want to end up in general psychiatric care again and doubt general homes for people with physical disability, vision impairment or brain injury can cope with my behavior. There are places for people with a combination of impairments, but these aren’t widespread. Like I said last week, staying in this area is no longer a top priority for me, but it’s definitely still on my list of things I hope for.

One thing that scares me, is the fact that I have a long history of being too complicated for one place yet not qualifying for another due to my needs not being (perceived as) significant enough. For example, when I lived independently, I kept being told that I “am not crazy enough” for a psychiatric admission, yet once admitted, I had to lie my way out of the locked unit because the open units couldn’t meet my actual needs. Similarly, I’m quite scared that I’m not severe enough for the complex care units and yet I know for sure that regular care homes won’t meet my needs, in that in those, you either have a physical disability or you have significant mental health or behavioral problems.

There is exactly one home in the entire country, if I’m correct, for people who are both visually impaired and autistic. Then again, I doubt it’s either of those disabilities that causes me the most significant problems. I think, and so did the substitute behavior specialist, that it’s my brain injury. Then again, thinking this creates another catch-22, in that my brain injury was the reason my autism diagnosis was at one point removed, yet I didn’t qualify for an acquired brain injury diagnosis either because I had my brain bleed and hydrocephalus in infancy. That’s how I ended up with borderline and dependent personality disorder diagnoses, neither of which truly explains my actual needs.

I can only hope that, in the nine years since I was kicked out of the psychiatric hospital because no place wanted me, I have accumulated enough evidence for my genuine needs that I can at least get sufficient funding. Then the next step is finding a home that will use the funding to meet my needs.

Every Move Counts!

Posted on by Astrid
Daily writing prompt
Hit 5,000 steps today and drop your achievement here — we’re cheering you on!
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I have had an Apple Watch for nearly four years. Its movement goals are based on calories burned while being physically active rather than steps. It doesn’t even automatically display your step count. I just checked the Health app on my iPhone and my step count on there is nearly 7,000 at 7:30PM.

Because I get most of my physical exercise through walking, I can safely assume that a day’s step count at least correlates to my level of physical activity for the day. That is, unless I rode the side-by-side bike to the next town or even farther.

My calorie goal on my Apple Watch is 300. This goal is fairly easy to reach if I go for at least one walk. Even if I don’t walk, I can still reach it by dancing for about 20 minutes. The only times I didn’t reach my movement goal, were times when I wasn’t physically active at all, like during last week’s heatwave.

That being said, level of physical activity alone doesn’t determine health benefits. Effort does too. People who use a wheelchair full-time can still experience some health benefits of physical activity when they challenge themselves beyond their comfort zone. At least, this applies to brain health benefits. For metabolic health, actual movement is required. But not necessarily steps.

I honestly believe that I, even though I regularly hit those elusive 10K steps, experience fewer health benefits from my physical exercise than many who get in fewer steps. I mean, like I said, most of my physical activity involves walking. I should really incorporate more varied exercise into my routine. I do try to challenge myself physically even though this is in ways non-disabled people wouldn’t consider challenging. This way, I hope to keep my mind as sharp as possible.

Missing Mommy #SoCS

Posted on by Astrid

Hi everyone. Today’s prompt for Stream of Consciousness Saturday is “miss”. I immediately thought of the fact that I miss my mother. No, scratch that: I miss Mommy. I miss a mother I honestly never had.

When I was little, my mother did try to stand up for me to my father, who’d been adamant that if I didn’t meet his expectations for me, I wasn’t worth raising. Not even worthy of life. As regular readers of my blog know, my father asked the doctor when I was an infant in the NICU whether I should still be treated aggressively given my possible future quality of life. The doctor was adamant that they were keeping me alive no matter what.

As I get older, accept more care and show more and more that I’m unable (and unwilling!) to conform to my parents’ rigid ideas of a person with a life worth living, I find that my mother is the one most vocal about the fact that she’d rather die than than live like this. And by she, she means me.

Nonetheless, I can’t keep from texting my mother. I honestly wish I could full on go no contact, but that’d be extremely hard if not impossible. I’m working on making sure that at least she will never be appointed to be my medical power of attorney. I am thinking hard about the difficult choices should I actually deteriorate to the point of no longer being able to make my own decisions. The first step, after all, is making those wishes clear.

However, all this doesn’t keep me from missing Mommy. That is, missing a mother who unconditionally loves me whether I’m disabled, queer, neither or as in my case both.

Birth: The Effects of a Complicated Start in Life #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter B post in the #AtoZChallenge. I’m doing this challenge on healing past hurts. Today, I want to go far into my past: I want to talk about the effects of a complicated birth.

As regular readers know, I was born prematurely and spent the first three months of my life in hospital. Of course, I have no conscious memories of this time, but that doesn’t mean my complicated start in life didn’t have an impact. There is evidence that many people who were born prematurely or otherwise had a difficult start to life, experience attachment problems into adulthood. Now of course I didn’t have the most positive childhood either and there is no way of knowing whether I would still have attachment issues had my parents been well-attuned to me. Of course, this is also a difficult question, since my parents experienced their own trauma having me prematurely.

The thing remains though, a child who was born prematurely, spends time in a clinical setting that they should’ve spent literally inside their mother’s body. There are attempts to lessen the burden this has on children (and parents). For example, kangarooing, in which a baby experiences skin-to-skin contact with their parents, is encouraged as soon as it is possible. However, for preemies and other NICU graduates who are now adults, this may not have been the case. Many older NICU graduates hardly saw or heard their parents for the first few weeks to months of their life. My parents, thankfully, lived in the same city I was in the neonatal unit in, so they were able to visit often.

One thing that haunts me though, and I’ve mentioned this several times, is the effect my being medically complex from birth on left on my parents’ attachment to me. Like I said, whether I would’ve experienced attachment issues had my parents not mistreated me as a child, is a difficult question because one of the reasons they treated me so poorly is their difficulty coping with my being disabled. My father quite literally asked the doctor whether it’d make sense to keep me alive after I’d had a brain bleed a few weeks after birth.

It’s telling, in my opinion, that when you look up “birth trauma” online, what comes up most frequently is not the effects a child’s own start in life could’ve had on them, but the effects of complicated childbirth on parents. And like I said, one goes hand-in-hand with the other.

Mother As the Giving Tree: Reflections on Conditional Acceptance

Posted on by Astrid

Hi everyone. Last Monday, I attended an online meeting for adults who spent time in the NICU as infants. It touched me on many levels. One thing that was mentioned was the fact that most NICU parents go through their own emotional process, which then is passed on somehow to their child in the NICU and beyond. For example, many parents back in my day and before didn’t know whether their baby would survive, so they didn’t attach to their babies as they normally would have.

I was also reminded of something I read in the book The Emotionally Absent Mother. In it, motherhood is compared to the giving tree in Shel Sinverstein’s writing. I don’t think I’ve ever read this piece, but its point is that the tree keeps on giving and giving and expects nothing in return.

I have been thinking about my parents’ attitude to me as a multiply-disabled person. When I suffered a brain bleed in the NICU, my father questioned my neonatologist about my quality of life and what they were doing to me. “We’re keeping her alive,” the doctor bluntly replied. My father has always been adamant to me that he wouldn’t have wanted me if I’d had an intellectual disability, because “you can’t talk with those”.

I have always felt the pressure of conditional acceptance. I’ve shared this before, but when I was in Kindergarten or first grade, it was already made clear to me that, at age eighteen, i’d leave the house and go to university. I tell myself every parent has expectations and dreams for their child. This may be so, but most parents don’t abandon their children when these children don’t meet their expectations and certainly not when it’s inability, not unwillingness, that drives these children not to fulfill their parents’ dreams. Then again, my parents say it’s indeed unwillingness on my part.

I still question myself on this. Am I really unable to live on my own and go to university? My wife says yes, I am unable. Sometimes though, I wish it were within my power to make my parents be on my side. Then again, the boy in Shel Silverstein’s writing didn’t have to do anything to make the tree support him either.

I’m linking up with #WWWhimsy. I was also inspired to write this post when I saw Esther’s writing prompt for this week, which is “giving”.

#WeekendCoffeeShare (December 6, 2025)

Posted on by Astrid

Hi everyone. Yesterday, I had tons of ideas on my mind on what to blog about but no motivation to actually write. Today, it’s the opposite. I’m joining in with #WeekendCoffeeShare even though I think I don’t have a lot to share today. I, as usual, had my last cup of coffee for the day about half an hour ago and am going to take a break from writing this post to have my soft drink and chips. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. For most of the week, it was chilly but not rainy with daytime temps around 7°C. Today, the daytime high was 10°C but it’s been raining all day.

If we were having coffee, I’d tell you that I was pretty active for most of the week, both by walking and one time by cycling to the next town just to have a purpose for cycling. I didn’t need any groceries and we only ended up having a snack, but at least we weren’t aimlessly cycling around.

Today though, I spent the entire day indoors and still need to dance or whatever to reach my movement goal on my Apple Watch. My streak for whatever reason is still stuck on 33 days even though I’m moving each day and it’s been stuck on 33 days for a month or so.

If we were having coffee, then I’d tell you that I had many plans over the past week but haven’t accomplished a lot. On Monday and Tuesday, I did create some Christmas decorations out of polymer clay. Yesterday, I attempted to bake cookies. They turned out okay but not great and the process was frustrating. Nonetheless, it was better than lying in bed or staring into space, which is what I’ve been doing a lot lately.

If we were having coffee, I’d cheat a little with the coffee share being about the past week, since there was none last week. I’d share about the meeting I had with the behavior specialist early last week. It went well. First of all, like I said, the “one chance” rule about orienting new staff got ditched. My assigned staff, who is in training to become my side of the home’s support coordinator now too, E-mailed me the new orienting plan yesterday and it looks pretty good.

We also discussed my day schedule. In the future, I’ll hopefully get more set activities. In preparation for this, my assigned staff created instruction cards for some of my activities, so that I can hopefully do more activities regardless of which staff is assigned to me. She E-mailed these to me too and I gave some feedback.

If we were having coffee, lastly I’d share that I’ve been having lots of memories lately. And by “memories” I don’t mean good ones. Yesterday, for example, I remembered the team meeting for my current home I attended in the summer of 2023. One of the staff, when I told them that I can’t prepare my own lunch, replied: “But you lived independently, right?”. I immediately got defensive, because yes, I technically lived independently, but I shouldn’t have. Yesterday when I was talking about this with my wife, whom I’d first met when living on my own in 2007, she told me more about how bad it actually was. Until a few years ago, I believed that, while I couldn’t cope, this was mostly a mental thing. In other words, I was falling apart mentally but could really care for myself if I hadn’t been so scared. Well, no.

It is sad to realize that part of the reason why I need so much care is lack of training in childhood, adolescence and to a lesser degree early adulthood. I’m still struggling with my parents’ reasoning that they couldn’t have taught me because I was too strong-willed and just didn’t want to learn. It may’ve been true that I didn’t understand why I had to learn something that caused me frustration, but then isn’t it the parents’ job to guide the child through their frustration? I’m honestly still struggling with this.

Disabled Ace Day

Posted on by Astrid

Hi everyone. I once again haven’t been active on the blog much. I’ve been listening to a lot of podcasts lately, mostly true crime. Today though, I decided to check out the podcast The Ace Couple. In their most recent episode, which came out today and which I’m currently listening to, the podcast hosts said that it’s disabled ace day today. Ace, for those not aware, is short for “asexual”.

Like I shared when writing my post for coming out day, I’m for the most part asexual. I’m still figuring out where exactly I fit on the asexual spectrum. For those who don’t know, since sexuality isn’t an all-or-nothing thing, asexuality is a spectrum describing anyone who experiences significantly less sexual attraction to other people compared to the general population. People who are not asexual, are commonly called allosexual (“allo” being Greek for “other”). This also clarifies that people on the asexual spectrum, even people who are altogether ace, may experience sexual desire and pleasure.

I do not claim to be an authority on asexuality. Had I been able to be open about my queerness all this time, I might’ve been able to gather more information without feeling guilty. Like I said, I’m still figuring things out.

This is also where disability comes in. Commonly, it’s thought that disabled people, particularly those with intellectual or developmental disabilities, don’t experience the same sexual feelings as non-disabled people do. This is simply not true, although disabled people are more often taught to suppress our sexual feelings. After all, particularly those with intellectual and developmental disabilities are too often seen as “children in adult bodies”. I myself have used these analogies when describing emotional development. Because it finally enabled me to get sort of okay care, this analogy appeals to me even though it’s inherently ableist.

When a disabled person identifies as asexual or somewhere on the ace spectrum, it is then too easily thought that this is because of the way the person was raised or educated. This is the counterstereotype I so often used to talk about in my early days on WordPress (oh my, I need to bring some of those old posts back): if we want to defeat the idea that disabled people can’t have sex, asexual disabled people could be seen as harming the cause, similarly to how I’m seen as harming the cause for community-based support by living in an institution. In reality though, prejudice and oppression are systemic, not individual. Besides, it’s not our job as marginalized people to fit ourselves into society’s neat boxes, whether these are stereotypes or counterstereotypes or other ways of telling us who we are and how we should live our lives.

This doesn’t mean I’m not influenced by prejudice. Regularly, I think I’m too disabled for a relationship and that’s why I’m ace. I’m pretty sure that’s not true, as I do have many years of being in a relationship with my wife before either of us clarified our authentic needs and wants to the other. I remember writing a post back in 2008, which I’m not going to bring back here (don’t worry, wife!), in which I described not knowing whether I was actually attracted to her and thinking I certainly wasn’t interested in sex. If that doesn’t tell me I’m ace, what does?

The more I write, the more memories confirming that I’m indeed asexual, come to mind. I was quite repulsed as a teen, purposefully skipping the biology chapter on reproduction and refusing to read the sex ed material that my parents brought me at around age nine. Then again, I’m pretty sure my refusing to read it was because I hated reading Braille at the time and my parents made quite a big deal of me reading this book.

However, what if my asexuality is in fact related to my being multiply-disabled, including autistic? Does that mean I’m doing the disabled or autistic communities a disservice? I don’t think so, because like I said before there’s no value in dictating who I am. Besides, as someone who lived for twenty years not knowing she’s autistic and yet who was autistic all along, chances are we’ll never know for sure.

I’m joining in with #WWWhimsy.