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.

Shades of Blue

Posted on by Astrid

Hi everyone. This month, the Weekly Prompts Colour Challenge is “blue”. I have written several posts addressing the color blue. It is one of my favorite colors, probably my favorite after purple. Oh wait, now that I think of all the beautiful shades of blue, I actually believe as a general color category, blue is even better than purple. Sorry, lilac.

There are so many wonderful shades of blue. I once took a quiz on Dictionary.com to determine how much I knew about the different words for various blues. The only one I got wrong the first time I took the quiz, was the meaning of “cerulean”. I was unsure when I retook it today too, but remembered that my first instinct had been incorrect back then so selected the next thing that came to mind. And this time, I scored 8 out of 8 correct answers. That doesn’t mean that I don’t tthink cerulean should be purplish.

Since the quiz did not explain every shade of blue clearly, and there are many more that weren’t mentioned in it, I just looked a few up. Since I do have some concept of color despite being totally blind now, I can imagine what colors would look like. No-one can be sure whether I’m correct, but that applies to sighted people’s internal perception of color as well.

Blue is the color I have the most shades of in polymer clay and I don’t even have all of them. I have Fimo blue (true blue, so blue as blue should be, apparently), brilliant blue, pacific blue, aqua, blue ice quartz, blue agate and peppermint, which contrary to common sense is blue not green. I also have Premo cobalt blue and ultramarine blue, as well as Cernit in several shades of blue that I can’t remember. In this sense, it’s interesting to note that I hardly create anything primarily blue out of polymer clay. I think I need to change that.

Today’s Small Joys (June 1, 2025)

Posted on by Astrid

Hi all. Today is a mixed day emotionally. In the morning, I was quite tired and this frustrated me. At night, I also experienced frustration at the fact that, tomorrow morning, there’ll only be temp workers on this side of the home. We’ll see how it goes though and right now, I want to write and not just moan. So I’m joining Sunny Sunday and sharing this day’s small joys.

1. Doing my hair. I rarely do anything with my hair except for brushing it, but today I decided I wanted it in a ponytail. I have a dozen scrunchies and selected one that has a really velvety texture.

2. Perfume. I also decided to spray on some perfume. I rarely do this and wasn’t sure anyone other than me would notice, but my best friend did.

3. A white Kinder Bueno. Usually my best friend and I buy one to share when we’re at Hema, my best friend’s favorite store. We were there this afternoon, but only to have lunch. I said I wanted to pop into Aldi for some quark and my best friend apparently needed groceries too. It still surprised me that, when dropping me off at the institution, my best friend gave me the Kinder Bueno.

4. A pun on the word “quark”. For those not from Europe, quark is like thick yogurt (sometimes wrongly called cottage cheese). My friend though found another meaning, some type of physics term, and kept asking me whether I wanted “hadron-yogurt”. This is something I truly love about our friendship: the tons of inside jokes that no-one else understands.

5. A large stroopwafel (cookie) with my evening coffee. According to my foo plan, I only get those on Fridays and Saturdays, so it was great having a treat.

6. Lovely comments from my readers. I am so glad I don’t rely on search engines like Google (thank you not, AI) to drive traffic to my blog. I do really hope blogging will withstand the influx of AI.

7. Speaking of AI, having some more creative ideas thanks to a ChatGPT convo I had several months ago and was reminded of today. Specifically, I had ChatGPT create a Premo polymer clay color recipe for the color of my best friend’s car and was reminded of this when a person in a Facebook group asked for Premo color recipes. There are plenty on Etsy, but in that group, we aren’t allowed to mention vendors. Another commenter said a lot of it is experimenting. I am now wanting to start experimenting with colors. I know the result will likely be poor because of my blindness, but I love the creative flow this idea gets me into.

Blindness Doesn’t Bind Me

Posted on by Astrid

I am blind. This is, in a sense, an advantage. Not because it means I’m more capable in some way than sighted people. Of course, I could be more capable than some sighted people in some ways, but that’s not due to my blindness.

I say my blindness is an advantage in that it allows me an easy explanation for my challenges when I don’t want to elaborate. Other blind people – those in the “competent blind adult” community – may think I’m setting a bad example. Honestly though, I don’t care.

I know blindness shouldn’t bind me. It shouldn’t keep me from achieving my goals. But neither should autism. Or mild cerebral palsy. Or any of my other disabilities alone.

But I don’t want to have to pull my every disability apart to see how it does or does not – or should or should not – limit me. I am not blindness, autism, cerebral palsy or whatnot. And yes, I know I’m more dependent than other people with my diagnoses. But I am not my diagnoses. I am myself and I lead a meaningful life as much as I can. And that includes not letting other people define what that is.

Written for Three Things Challenge #MM75. I didn’t know how to fit in the word “abound” and actually had to look up its definition to be sure I would, if using it, use it correctly.

IQ Tests and Final Exams and Psychological Assessments, Oh My!

Posted on by Astrid

Hi all! Today, Esther’s weekly writing prompt is “tests”. Oh my! This made me think of so many things. IQ tests: I’ve had half a dozen or more during my life. Final exams: so glad they’re over with and it’s been twenty years since I graduated high school. Psychological assessments: I still have a love-hate relationship with those. And that goes for tests in general, I guess.

After all, as a child, I didn’t mind taking IQ tests. When I was twelve, I got the infamous Wechsler IQ test, well, the verbal part of it, since I’m blind and the performance part isn’t accessible. I got a score of 154, which, according to the psychologist, indicated giftedness. I’m pretty sure there were all sorts of things wrong with that assessment though.

When I was 30, I got another IQ test, Wechsler again but the adult version and now they removed the clear distinction between verbal and performance IQ so the report just said I got “parts” of the test. My overall IQ score had dropped to 119 I believe. That’s still above-average and I’m pretty sure that’s correct. However, I wish there were a performance IQ test for blind people, because I am pretty sure that’d show where my real limits are. Not that I’m proud of being disabled, but I am and if it could be proven on a test, that’d be much better than an ever-changing psychiatric diagnosis.

Final exams. Like I said, I’m glad it’s been twenty years since I graduated high school. My final exams were quite frustrating, as not only was I horribly nervous, but my computer crashed once in the middle of the test. I graduated from what in the UK is called grammar school and honestly I have no clue how I did it. I mean, well, I know, sort of: the same way I “passed” my IQ tests, ie. being a pretty above-average memorizer. Too bad that a good memory and decent academic skills don’t get me far in life. It takes more than test-taking abilities to be successful, after all.

Devotion to Polymer Clay

Posted on by Astrid

Hi everyone. Today I’m joining John Holton’s Writer’s Workshop. I’m choosing to write on the prompt about devoting your life to art. What type of art would I devote my life to?

The question here is, are we to choose just one particular form of art that we’d devote our entire life to, or are we allowed to pick more than one form? After all, many art forms are interconnected and I would not enjoy one without the other.

For instance, I would probably not enjoy polymer clay as much if I didn’t take photos of my work and didn’t write about the craft on here. Also, if I make jewelry out of polymer clay or use polymer clay beads in a necklace or bracelet, that’s basically combining two crafts.

So, let me say I cannot choose just one art form, because, though my photographs aren’t all that artistic, I’d still have to choose between polymer clay and writing. I flat out refuse.

After all, though writing comes easiest to me, polymer clay is what brings me the most joy. I just love the fact that, even though I’m now totally blind, I still have some insight into colors. I also still, four years into the craft, love creating unicorns.

I made three unicorns in the past week. The latest, I haven’t baked yet because I just made it this evening. The other two I made late last week. One is probably going to be a gift to a staff who gave birth last week. I loved working with the two colors for the mane, tail and horn, but its horn is a little crooked.

The other one, which I myself like best, is for me. After all, you can never have too many unicorns.

A few years ago, I talked to my then staff about possibly creating unicorns to go into the care agency’s shop. That idea never materialized, but I’ve brought it up a few more times. I’d just love to have polymer clay as my “job”. Here, I chose anyway. And I also wrote on another prompt, because creating the unicorns is the main thing that made me smile recently.

School Reunions

Posted on by Astrid

Hi everyone. One of this week’s Writer’s Workshop prompts is to write a post based on the word reunion. This reminded me of two reunions, one I actually attended and one I didn’t.

The reunion I did attend was for the school for the blind I had been a student at for my last three years of elementary school in the late 1990s. The reunion took place in 2008 and it was on school grounds. The reason the reunion was held, was the fact that many buildings would be reconstructed in the next couple of years, so as to give former students and staff one last chance to see school grounds in the form they’d remembered them.

The school included buildings for both elementary and secondary school, as well as homes for the residential students and a place for leisure activities where the non-residential students had lunch too. I was a non-residential student and only attended elementary school, like I said.

There were two reasons why I wanted to attend the reunion. One was to meet former fellow students and staff. That was a success. I met my best friend from school, with whom I hadn’t been in contact since leaving this school in 1998. I also briefly talked to my fourth grade teacher. That was awkward, as I didn’t feel comfortable disclosing to him that I resided in a psychiatric hospital at the time.

The other reason I wanted to attend the reunion, was to see the school in the form I remembered. That, unfortunately, wasn’t a success, because part of the elementary school, including the classrooms, had been destroyed in a fire in 2006. Part of the building was still standing, but it was no longer useable.

I was on grounds a few more times attending smartphone use training in 2017. On May 24, I believe, there’s going to be another reunion for this school, but it isn’t on grounds and I know no-one who will be attending, so I won’t either.

This brings me to my other reunion story. IN 2013, my high school celebrated 100 years of existence. I for a while considered attending, but was still in the psych hospital at the time and besides, my entire high school experience had been quite bad. So I didn’t go.

A few years later, I got an E-mail from a former teacher there. She had been my Dutch teacher and tutor for the first year and part of the second year of my attending this school, until she went on sick leave and finally found another job. She had been at the reunion and had wondered about me. Having read part of my website, she now understood why I hadn’t been at the reunion.

This, as it turned out, would also have been my last chance of meeting the teacher who’d become my tutor after the Dutch teacher left. He got cancer about a year after I’d graduated high school in 2005 and died in 2016. I am pretty sure it was for the better that he didn’t know that I was still in the psych hospital then.

Neurospicy Burnout

Posted on by Astrid

Hi everyone. A few days ago, I listened to a podcast episode on autistic burnout. It’s the most recent episode of Beyond Chronic Burnout, a podcast for autistic women (and other marginalized genders, I hope) and their helping professionals. It discussed the Spicy Pepper burnout questionnaire, which apparently is a questionnaire to determine your level of burnout. I got overloaded trying to find the actual questionnaire amid all the ads etc. and it looks like the website it was published on, isn’t particularly screen reader friendly, so I wasn’t able to take the test. However, from the descriptions discussed on the podcast, I believe I’m in quite a significant burnout and have been for, well, years.

What is autistic burnout, you might ask? Autistic burnout is like regular burnout from being overworked, but it is really more like being overworked living life in a world not designed for autistics. As I have said for many, many years, just living in a neurotypical world is hard work for me.

I want to clarify that autistic burnout is often amplified by co-occuring conditions such as ADHD. In fact, writing this just reminds me of something I read several years ago that said that having fibromyalgia, which is often agravated by stress, is often correlated to ADHD. This is why I refer to neurospicy burnout.

The podcaster claimed that the first signs of burnout in autistics usually appear between the ages of four and six and many autistics experience their first actual burnout between the ages of six and ten. This was hugely validating. I, at age five, fell ill with what my parents claim was the flu, but it did lead them to get me into special ed quicker than originally intended. Age seven is always when my parents claim I changed from a cheerful, happy child to angry and depressed. This correlates with my having to start learning Braille, so according to my parents I then became aware of my declining vision. This is probably correct, but it doesn’t mean that my difficulty accepting my blindness was the only or main problem.

The first warning sign of autistic burnout, the podcaster says, is suicidal ideation. Oh my, can I relate! I honestly always thought that the first sign of burnout, whether neurospicy or work-related, was exhaustion. That with the fact that I react to overload with overactivity and irritability, always made me believe I’ve never had “real” burnout symptoms. Now I realize that I may not have fully collapsed (yet), but I do certainly experience burnout. And have for, well, my entire life since I was seven, I guess.

Moon Phases and Seasons

Posted on by Astrid

I, being blind, haven’t been able to see the moon in at least a quarter of a century and for most of this time, I didn’t pay much attention to its existence. I didn’t have a clue which phase the moon was in until a year or two ago, when Apple introduced moon phases as part of its weather app. Even then, I saw the moon phase as just some random factoid I liked.

That is until a few months ago, my staff told me about a fellow client who is usually very cognitively impaired and withdrawn but lights up significantly during the time around the full moon. I haven’t yet figured out whether moon phases impact me too, but I wouldn’t be surprised if they did. I’m just not as aware of the moon because I can’t see it.

Which brings me to the topic of seasons. Fall here has been incredibly warm and I’m struggling to conceptualize the fact that it’s late October. I can still see whether it’s light or dark outside when I’m actually outside, but I am starting to struggle more with the concept of seasons. I do still know that it’s late October, but I don’t “feel” it, if this makes sense. I don’t know how much of this is my blindness and how much, if anything, is cognitive decline.

I’m sharing this post with Friday Writings, for which the optional prompt is the moon. Yeah, I know it’s Sunday, but who cares?

Phones #SoCS

Posted on by Astrid

Today’s prompt for #SoCS is “phone”.

I’ve had an iPhone for just over seven years now. Before that, I had a sturdy regular cellphone. I once had the earliest model of a smartphone-like thing, a Nokia 6230i, but I could still only use it to make calls. I got it with my then new phone plan because I wanted to make use of a scheme by which cellphone calls would be charged landline fees. Remember, it was 2007, so cellphone rates were still very high and I didn’t have a landline. That is, I wanted to get one while living independently in Nijmegen but had just got it installed when I landed in crisis. I in fact had my home phone that I intended to use in my apartment with me when I was hospitalized.

The reason I could only make calls with a phone that was almost a smartphone, is the fact that it didn’t have MobileSpeak, the earliest excuse for a phone screen reader, on it and it couldn’t get it installed even if I wanted to. I’m surprised at how things have changed. Then again, I really shouldn’t be surprised. Life progresses, after all.

My current iPhone, I use for all kinds of things, almost like a handheld computer. That is, not actually almost, really, since I don’t even take my iPhone with me when I leave my room. I really want to do that more, so that I can take pictures when I notice something interesting. Like the rainbow my staff saw a few days ago. I really wish I’d had my phone with me then.