Independence

Posted on by Astrid

In last week’s Sunday Poser, Sadje asked what independence means to you. Her question was related to Independence Day in the United States. Of course, one can view independence and freedom in light of one’s national political situation. For example, the Netherlands is a pretty stable democracy. The country has been independent in its current form ever since 1815, though Wikipedia even lists 1648 as the Netherlands’ independence year.

I for one, however, tend to apply independence and freedom much more personally. By independence, I refer to the skills I can do by myself, ie. self-reliance. This includes eating, toileting, dressing myself, writing my blog, etc. But it also includes the skills of self-determination.

I think self-determination is particularly important. By this I mean the ability to know what you want and make it clear in some way or another. Everyone, the disability rights movement assumes, has this capacity. Yes, even people who can’t talk and are labeled as profoundly intellectually disabled. However, it is so commonly overridden by well-meaning family or “helping” professionals.

I remember a client at the first day center with my current care agency for people with intellectual disability I attended. This client had severe cerebral palsy, was profoundly intellectually disabled, couldn’t speak, had epilepsy and was blind. However, somehow, the staff had figured out that bergamot essential oil was her favorite scent.

The same client was also sometimes called “spoiled” when she cried and then was quiet once the staff put a vibrating hose around her body. I’d say she was making known what she wanted. She was using her independence!

With respect to independence as freedom, I, for one, think that self-determination is more important than self-reliance. For example, I get help with my personal care. I myself asked for this after I noticed that it cost me a lot of energy to do it myself. Even though I could, with a lot of verbal instruction, take care of my personal hygiene independently if I really needed to, I decided this isn’t a priority for me. My staff, thankfully, agree.

What is important to you where it comes to independence?

I am also joining MMA StoryTime’s Word of the Day.

Fight for the Light #SoCS

Posted on by Astrid

SoCS Badge 2019-2020

Sigh
I fight
For the light
That’s out of sight

Those were the words that popped up into my mind when I read this week’s Stream of Consciousness Saturday prompt. I have absolutely no idea why these words popped up. I guess it’s something to do with the lingering effects of my crisis two weeks ago. I’m still kind of depressed.

However, there’s also some hope shining through in my words. Just because the light is out of sight, doesn’t mean I don’t fight to find it. I am blind, so anything is basically out of sight. Well, not literal light, since I have light perception, albeit only a little bit. Anything else, really, is out of sight for me.

I’ve been pondering object permanence recently. This is the ability to know that, if an object (or person) is out of sight, it is still in existence. This ability is usually acquired at around age eighteen months, so my niece should have it. I rationally do too. Emotionally though, not so much. Though I don’t literally feel that a person who has left my proximity, no longer exists, I usually half-joke that they might just as well be on the North Pole. I wonder whether this struggle with some level of object permanence, could be due to my blindness. I guess not though.

A Bottle of Hope

Posted on by Astrid

Today, I feel stuck in the twilight zone between good and bad. I’m not feeling as hopeless as I was two weeks ago, but I can’t quite say I’m feeling happy either. I really feel numb. This seems to be the story of my life anyhow. I’ve rarely felt truly happy. Sometimes, I feel dysregulated, desperate, out of control. Some other times, I feel a glimmer of joy. That rarely lasts long. This afternoon, I experienced such a glimmer of joy when making a necklace. Then this evening, I was in a small crisis again.

Still, I have this instinct to survive, to go on. I still keep this bottle of hope that I know at some level will always be available to me. Even at times when I’m most dysregulated, I haven’t intentionally taken steps that would really end my life. I still, deep down, have this will to continue.

Now if only I could put the energy I’m putting into merely keeping hope alive, into actually practising contentment. If only I could pick up that bottle of hope from the shelf, instead of letting it sit there until I (someday, probably never) find the perfect life circumstances. Keeping hope alive is one thing, but living a life of joy and contentment, is quite a bit further up there.

This post was written for Eugi’s Weekly Prompt and Michelle’s July 1 writing prompt

Powerful

Posted on by Astrid

My Braille display, which I use to access my computer and smartphone as I am blind, is giving me problems again. In fact, it’s been acting up ever since only a few days after it got fixed three weeks ago, but I hadn’t wanted to disclose this on my blog. After all, the Braille display costs several thousands of euros and the company had originally claimed that home contents insurance (which I don’t have at this point) should pay for the repair, so I had been wanting to keep this private while investigating my options. Now though, the thing has been acting up so badly that it caused me to spiral into a parasuicidal crisis. This may seem odd, technology being so powerful as to get me to lose my sanity. Thankfully, my husband calmed me down!

This post was written for Six Sentence Story Thursday, for which the prompt today was “Powerful”. It was also inspired by Abbie’s contribution to the blog hop.

I Am a Rock #SoCS

Posted on by Astrid

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “roc”. I didn’t know that even is a word, but we can use words with “roc” in them too. I was immediately reminded of “rock” and then of the Simon & Garfunkel song “I Am a Rock”. As I assume most of you will know, it goes like: “I am a rock, I am an island. And a rock feels no pain, and an island never cries.”

This reminded me of the fact that, at around age thirteen, I would describe my class as a country with lots of states and one of them, me, would be an island. Think Hawaii. This, of course, symbolized the fact that I felt like an outsider or even an outcast in my class.

One day, I showed a girl in my class the piece about the island. This girl promptly decided to type on my laptop and let my text-to-speech read: “Astrid is my friend.” She probably felt pity for me, as the friendship never lasted. It was rather based on rules, as was my entire class’s associating with me.

Like, before I found my way around the school by myself, classmates had to sighted guide me around. There was an entire schedule which had the girls be sighted guide and the boys carry my backpack, until I decided, with a little nudging, that I could carry my own backpack. I mean, yes, it was heavy with my laptop and all, but so is every early secondary schooler’s backpack. From then on, the boys would sighted guide me too.

This meant I had to sit with them during recess. After the island story incident with my “friend”, she and her clique allowed me to sit with them everyday during recess even if it wasn’t their turn to be sighted guide.

At the beginning of my second year at this school, I decided I’d had it with sighted guides and especially with the schedule. I tried to find my way by myself, often struggling, but this was better than to have people assigned to me who didn’t want to associate with me. Quickly, that became the entire class, including my “friends”.

I am a rock. I am an island. And a rock feels no pain. Literally. By the end of my second year in this school, I had mastered the coping mechanism of detaching from my surroundings and myself. I felt like I lived in a movie. I still feel that way at times, even though I have no need (I hope) to escape my current life.

First Impressions

Posted on by Astrid

I’m rather late to write today. I wasn’t sure what to write about, if anything, for all of today. Then I came across
Fandango’s provocative question for this week. This definitely inspires me. Fandango asks what impression you think you make when people first meet you?

Well, let me start by saying it depends. The factor that makes the difference is largely whether I’m using my white cane. When I am, that’s obviously the first thing people notice. Then most people will immediately know that I’m blind and their further impressions of me will be as much based on me as on their views and prejudices about the blind.

When I’m not using my white cane, people will usually still immediately notice that I am disabled, but be unable to tell what my disability is. This surprised me for a long time, as I always thought the fact that I’m blind is obvious from the way my eyes look. Apparently not, at least not since my cataract surgery in 2013.

In fact, I didn’t know that it’s not obvious somehow until I attended my second online cerebral palsy meeting. In the first, I had mentioned my additional disabilities immediately, but I had no reason to the second time around. Midway through the meeting, I got to mention it and the people who hadn’t attended the previous time all said they hadn’t known.

Generally speaking, I allow strangers and near-strangers to make their own judgments about me and my disabilities based on the first impression, be it that I’m blind or that there’s something “wrong” but they cannot be sure what. Sometimes I correct them, but less and less so. I mean, I could correct taxi drivers that it’s not obvious that all blind people live in care facilities, but why should I? I don’t think I have an obligation to justify why I need 24-hour care and people who are just blind don’t. I honestly don’t feel it’s my responsibility to set an example of competence that I cannot live up to just so that others won’t stereotype other blind people.

I once was approached by a police officer, because I had been wandering the neighborhood without my white cane. That policeman assumed I was either high on drugs or intellectually disabled, as he asked me whether I’d used or had eloped from the local institution. At the time (when I was around eighteen), I had virtually no understanding of the impressions I made on people and I initially corrected him. My father thought the police officer was stupid for assuming I had used drugs or belonged in the intellectual disability facility. I think my father’s preconceived judgments about me and anyone interacting with me, were farther off than that police officer’s.

It May Be May #SoCS

Posted on by Astrid

SoCS Badge 2019-2020

It may be May already, but the weather’s still not that good. Though it is a little sunny with some clouds here, the temperature’s still low at a high of 12°C today. It’s supposed to rain all of next week and the temperature isn’t supposed to get above 16°C and that won’t be till next weekend.

The month of April was very chilly too, though it wasn’t too rainy. Oh, how I want higher temperatures!

In May, I usually anticipate summer eagerly. My sister has her birthday on the 13th. This is also when I start counting down to my own birthday at the end of June.

This year though, it doesn’t feel like it’s May already. It feels more like the beginning of March. I’m not sure whether that’s due to the weather or something else. Maybe it’s also because our lockdown still hasn’t eased much and we’ve been in it for so long. I mean, last year we were still in lockdown by early May too, but that one wasn’t implemented until the middle of March. Ugh, I can’t wait for some restrictions to be lifted. Oh well, some were, but I think the infection numbers are still too high for me to take advantage of that. Of course, I’ve been vaccinated and my parents too at least got their first shot. However, my husband and mother-in-law still haven’t gotten theirs. My husband isn’t sure he’ll ever be vaccinated at all.

Ugh, I’m tired of COVID-19 restrictions. I’m pretty sure they won’t work anyway. I mean, the infection numbers and hospitalizations are quite high and we keep getting glimmers of hope that they’re going down soon. I doubt it. I was also scared to find out that there’s an outbreak of COVID in a nursing home even after vaccination. Ugh, I was hoping I’d be protected. This freakin’ pandemic has been going on for so long!

Remember that, in March last year (I was going to write “last March” as if it isn’t past March 2021 yet), I wrote that I expected life to be pretty much back to normal by September of 2021. I honestly don’t believe that and I think neither does anyone else, though some people are still disbelieving when I tell them this pandemic might go on till 2024. That’s what I’ve read somewhere. I really hope that source is wrong.

This post was written for Stream of Consciousness Saturday (#SoCS), for which the prompt today is “may”.

Color Vision

Posted on by Astrid

As regular readers of my blog will know, I am blind. I wasn’t always totally blind though. As a child, up to around age twelve, I could see most colors. I could still see some very bright colors until I was eighteen.

When I asked the ophthalmologist at the university medical center to put me on the waiting list for cataract surgery in 2013, some color vision was all I hoped for. The doctor said that the best possible outcome was that I could have hand motion vision, ie. see someone’s hand move from one meter away. I didn’t really care about seeing anything one meter in front of me. If I’d have to hold a colored paper five centimeters in front of me to see its color, that was fine by me. I just wanted to be able to distinguish colors again. Unfortunately, though the surgery was at least a partial technical success, I never regained color perception.

When asked at the rehabilitation program for the blind what we’d be happiest about to regain if we ever regained our vision, most of my fellow clients mentioned some variation of independence. I, though, said that I’d be able to enjoy the colors of nature again. Unfortunately, though technology has come a long way, it will likely never be able to recreate an experience remotely similar to color vision.

I can still, fortunately, see some colors, but it’s in my mind’s eye. You see, I have projected grapheme-color synesthesia. When I touch the characters on my Braille display, they evoke a visual sensation of a color. Each letter corresponds to its own color, though some of the colors are very similar. That probably reflects the fact that I was never able to see the full variety of shades of colors that sighted people can. For example, the V and J are both a light shade of green. I can tell them apart if I see them both, in that the J is a slightly lighter, mintier shade, but it’s hard to describe.

Words also have an overarching color. In case you’re wondering, the colors of color words don’t always align with their meaning. For example, the word “Green” is more red (after the letter G) than green, even though both E’s are green.

I love my synesthetic color perception. It makes up for a loss of appreciation that no amount of technology can compensate for.

This post was inspired by CalmKate’s Friday Fun Challenge with the theme of “Colors”. I’m not really sure whether this rambling piece fits the idea of the challenge, but oh well.

The Most Important Milestone

Posted on by Astrid

This week’s prompt for Reena’s Exploration Challenge is “Milestones”.

I am a big calendar girl. As such, I always remember important dates. As a teen, I used to commemorate an important event in my life at least once a month. For example, September 24, 1999 was the day I realized I hated mainstream secondary school and I remembered it for several years afterwards. Similarly, on November 2, 2001, I was in crisis. Same on November 2, 2007 and I was sure the reason (or part of it) was the day (Friday) and date. I still to this day commemorate the day I landed in the psychiatric hospital, even though it’ll have been fourteen years this year.

I realize now that all of these are negative. Don’t I have positive anniversaries? Sure I do. September 19 is the day my husband and I first met (in 2007) and the day we got married (in 2011). On May 7, 2008, we started officially dating and on June 4, 2010, my husband proposed to me.

Then there is the day I was approved for long-term care funding, also June 4 but in 2019. Finally, the day I moved into the care facility, September 23. I only now realize that there were twenty years minus a day between the important event that defined my teens and the important event that I hope will define at least most of the rest of my life.

Okay, that makes me feel ashamed. After all, shouldn’t the most important milestone of my life be the day I met my husband or the day we got married? It probably should be, but right now, honestly, it isn’t. Sorry, hubby.

Runaway #SoCS

Posted on by Astrid

When I was still in the psychiatric hospital, I’d run off often. At the locked unit, this was dealt with by introducing seclusion and restraining measures. On the other hand, at the unit I resided at later, I was made to be accountable myself. This meant that staff wouldn’t go after me if I ran off. They believed that, if I got lost enough times, I would unlearn to elope. I didn’t.

I am a truly frequent runaway. Always have been. When I still lived with my parents, I would often run away too. Same when living independently. I had frequent police encounters because of this. They would invariably call the crisis service, who would refer them back to my home support team. They all had no idea how to handle my elopement.

Then, when I went into long-term care in 2019, I still ran off a lot of times. I usually didn’t get far, as my staff would come after me. I also did get some restrictive measures, such as a sensor that alerts the staff when I leave my room. The door of my care home is locked at night because of my elopement risk too. (The other clients can’t work the key and most aren’t safe outside of the home alone either.)

Since my one-on-one support got introduced last December, I hardly ever run away. It’s been a true blessing. Sometimes though, I still wonder whether I’m indeed just manipulating, like the people in the psychiatric hospital would say, and need a lesson in accountability.

This post was written for Stream of Consciousness Saturday or #SoCS, for which the prompt this week is “Run”.