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.

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.

Mother’s Day

Posted on by Astrid

Today is Mother’s Day in the United States as well as here in the Netherlands. I’ve seen lots of ads for it floating by for weeks. It’s probably been this way forever. That being said, I never quite paid much attention to Mother’s Day after getting out of elementary school. Back in the day we did the obligatory Mother’s Day crafts. Since my mother has her birthday in late April, she never quite cared (or we conditioned her not to).

I started caring again, at least a little, when I got out of the psychiatric hospital and started day activities at a center for people with intellectual disability. Most other clients still made crafty things for their mothers. I decided to join in and create something for my mother-in-law.

You see, I have never had the best relationship with my own mother. She no doubt loves me, but the way she expressed it when I was growing up is, well, kind of odd.

That plus my mother’s late April birthday means I never quite honored her for Mother’s Day. My mother-in-law though has her birthday in late November.

My own parents have always been big on independence. I understand, but they took it a bit too far given that I’m multiply-disabled. They pretty much left me to my own resources by the time I left high school at age nineteen.

My mother-in-law, on the other hand, has offered to be my informal representative with my care agency. This means that she’s invited to care plan meetings and would be appointed as my guardian should I ever become incapable of making my own decisions.

One time before I was dating my now husband, I too had to appoint an informal representative for a living facility I was on the waiting list for. I appointed my father, but wasn’t happy about it. I do trust my parents to leave me to my own resources, but I don’t trust them to be there when I actually do need them. What I mean is, I am confident that they won’t approve of restrictive care measures without my consent, but I am pretty sure they will rather advocate for me to be kicked out of care.

With my mother-in-law, I am pretty much on the same page. I am not sure she’s seen my current care plan, but she has talked about it in a way that suggests she knows and understands my need for intensive support. Even my husband doesn’t know some details she appears to be in the know about.

My husband jokingly calls my mother-in-law my adoptive mother. If adults can adopt a mother, that’s quite exactly her. I am glad to have her. And just in case you were wondering, yes, my own mother is happy for my mother-in-law to be my informal representative.

#WeekendCoffeeShare (May 8, 2021)

Posted on by Astrid

Hi and welcome to my #WeekendCoffeeShare post for this week. Grab a cup of coffee, be it Senseo or traditionally-made, a glass of your favorite soft drink or a glass of water and let’s catch up.

If we were having coffee, I’d share that the weather here is still all over the place and mostly not in a good way. It’s mostly rather chilly for the time of year and has been raining everyday for the past week. Tomorrow, the temperature’s supposed to rise to a whopping 25°C, but we’re still supposed to get rain and of course thunderstorms. Not fun!

If we were having coffee, I would tell you that, despite the weather, I still managed to get in an average of about 8000 steps each day. I’m still experiencing foot pain when wearing my AFO for longer than say fifteen minutes at a time, but it’s okay if I don’t go for long walks.

If we were having coffee, I would share that I am so happy that my Braille display got fixed. Like I said yesterday, it was quite the ordeal.

If we were having coffee, I’d also share that the construction crew finally came by my and my husband’s house in Lobith to get us a new front door and backdoor. They still need to fix one window, which has a crack in it. Thankfully, they weren’t as stubborn as the Braille display company, so my husband won’t have to pay for the broken window.

If we were having coffee, I’d tell you about the talk I had with my facility’s behavior specialist on Thursday. I was able to express my continuing feelings of not belonging in my current care home. This, for clarity’s sake, has nothing to do with the care home itself or the way the staff treat me, which is great. I am pretty sure it’s my search for some ideal that really doesn’t exist. After all, wherever I go, I always take my insecure self with me.

If we were having coffee, I’d tell you about the online cerebral palsy (CP) meeting I had this morning. It was a regional meeting, because in the future CP Netherlands hopes to organize them in real life. It was quite an interesting meeting. Having recently become more and more aware of my CP, I was able to feel validated by people’s experiences of the long-term effects of this disability.

I also signed up for an online workshop on aging with CP that’s being held next month. I am still considering whether to sign up for the workshop on development of people with CP from birth to age 35, as it sounds interesting despite the fact that I’m nearly 35 myself.

If we were having coffee, lastly I’d share that my husband and I are planning on having lunch tomorrow. As usual, we’re going to get a takeout lunch at Subway.

How have you been?

I’m Not Broken (And Neither Is Anyone Else)

Posted on by Astrid

A few days ago, I got a notification on WordPress that someone had liked a post of mine called “People Aren’t Broken”. It was probably on an old blog of mine and I can’t remember exactly what the post was about. From what I remember, it was written in response to a person being officially diagnosed as autistic and seeing this as a reason they weren’t “broken”.

Indeed, before my autism diagnosis in 2007, I always thought I was “broken”. Same once my autism diagnosis got taken away in 2016. I still had a personality disorder diagnosis (dependent personality disorder and borderline traits), but I believed strongly in the stigma attached to it. That wasn’t helped by the fact that my psychologist at the time used my diagnosis to “prove” that I was misusing care. I wasn’t.

Today, I found out people applying for benefits are completely screened by some kind of information gathering agency. It made me worry that the benefits authority or long-term care funding authority will do the same, even though I already have both.

It’s probably the same internalized ableism (discrimination against people with disabilities) speaking up that tells me that, if I don’t have a “legitimate” disability (like autism) that warrants me getting care, I’m just manipulative and attention-seeking and generally broken. I am not. And neither is anyone else. Including those who actually do have personality disorders.

This post was written for today’s Five Minute Friday, for which the prompt is “Broken”. Of course, I could have (should have?) written a more spiritual post and, from that perspective, everyone is in fact broken. What I mean with this post, though, is that there’s nothing that makes certain people broken based on disability or diagnosis.

An F in Phys Ed

Posted on by Astrid

One of Mama Kat’s writing prompts for this week is whether you played sports as a child and if so, to share a memorable game. I never played sports outside of school. That is, I attended one gymnastics class with my sister and a friend of hers at around age eight. I didn’t enjoy it one bit, despite normally liking gymnastics in physical education classes.

I was, to put it plainly, horrible at sports. Any sports. While gymnastics was my favorite part of physical education, it was more because I hated team sports and athletics even more.

At the school for the blind I attended for grades four to six, I was always picked last. Not just because of my lack of athletic capacity, but also because I was the only girl in my class. I don’t blame my classmates though.

When I attended mainstream high school, my phys ed teacher was also my tutor. He was great at accommodating me up to a point. For example, he let me run with a buddy. Of course, I was the slowest runner of the entire class. Looking back, I like to blame my mild cerebral palsy, but I still struggle to figure out what is due to that and what is simply due to my being fat. Not that I was fat at the time, but I wasn’t skinny either.

In my second year in this school, I hadn’t had any failing grades until sometime in February. My classmates complained that I got it easier than them, because for example I’d get extra time on tests. Whether this motivated my phys ed teacher or not, I’ll never know. We had to do gymnastics, a particular swing on the rings. I couldn’t really see what everyone else did, but I tried my best. And failed. My teacher explained to my father that I might’ve done the best I could, but he couldn’t possibly justify giving me a passing grade.

Like I said, he was my tutor. He almost took pride in being the first to give me a failing grade that year. Except that he wasn’t. That same week, I’d gotten an F in Greek too. That one was definitely justified, as at the time I didn’t face any barriers to learning basic Greek that my classmates didn’t.

From the next year on, I started going to a gym instead of following regular PE classes. I, after all, would never be able to attain the level of physical ability required for higher secondary school sports. I continued to attend the gym regularly throughout high school and for the first several years after.

Mama’s Losin’ It

Sky Is the Limit #SoCS

Posted on by Astrid

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “Sky’s the limit”. I was immediately reminded of a story in Stephanie Kaars’ book Speciale mama’s (Special Mommies), in which this phrase inspired a mother to challenge her son, Sky, who had severe cerebral palsy, beyond his apparent limits.

It then made me think of how challenging someone beyond their apparent limits, doesn’t mean expecting them to be “normal”. I mean, the phrase which inspired the mother says that her son is the limit. In other words, each child or adult is their own limit of what they can achieve and this should not be defined by the person’s characteristics, such as disabilities.

I don’t have as severe a disability as Sky. I mean, yes, of course blindness is seen as a “major” disability for statistical purposes, but it alone doesn’t qualify anyone for long-term care. Severe cerebral palsy does. That being said, I do have a significant combination of disabilities: blindness, autism and mild CP.

I don’t think these disabilities, or rather the stereotyped perception others have about them, limits me. I mean, of course my disabilities impair me, but that’s totally okay. I am not limited by others’ ideas of what a blind person (as that’s my most visible disability) can or cannot do. Because, you know, even though I am in long-term care with the highest care profile in the visually impaired category, people still sometimes say I’m quite capable for a blind person. No, I’m not.

I am also reminded of the current slogan for the National Federation of the Blind: “I can live the life I want; blindness doesn’t hold me back.” The old slogan was: “With proper training and opportunity, an average blind person can do a job as well as an average sighted person.” This may or may not be true for the hypothetical average blind person, but it certainly isn’t true for me.

Is the new slogan? Yes, I think so. I could really go to university if I pushed harder, maybe. Maybe not, I’m not sure. However, I have no desire to go to university anymore. Similarly, I wasn’t dying living semi-independently. Well, I almost was, if you count the two medication overdoses I took, but those weren’t due to blindness. Then again, I am happy to live in my current care facility. I may still have things I want to improve on, but I for the most part do live the life I want.

Some Might Say: Judgments About Me #Blogtober20

Posted on by Astrid

Okay, I said I wasn’t going to take part in the #Blogtober20 prompts anymore, but this one did speak to me. Today’s prompt is “Some Might Say”. People can be incredibly judgmental. Today, I will write about some things people have said about me that indicate they are clueless or insensitive or both.

The first things people notice about me, are my blindness and the fact that I’m relatively well-spoken. This often leads people to assume that I either should be able to be independent or that I am obviously not because I’m blind.

My parents and other people who are relatively educated about blindness, often assume that I should be able to live independently and be employed. Even if they are fine with my “choice” of not pursuing a career, their idea of me is to live independently. Some people who don’t know me that well, ask whether my husband and I have or want kids. To me, it’s obvious that we don’t, but then again that may be internalized ableism. After all, I for one am not able to take care of kids, and besides I value my freedom. Others with my disabilities may definitely be able and willing to parent.

Another judgment I often get is that my marriage isn’t strong because we don’t live together. My last psychologist at the mental hospital even dared to say my marriage isn’t worth anything if I don’t intend on living with my husband. Well, when we got married in 2011, we had zero intention of living together. I was on the waiting list for a permanent workhome for autistic people. It is only because that didn’t work out, that my husband asked me whether I wanted to live with him. And just so you know, our reason for getting married is that we love each other and want to show each other that this is for life. And in my opinion, that’s the essence of marriage. Okay, I know that at least a third of marriages end in divorce, but I hope that if couples get married, they at least hope this is going to be for life.

Like I said, some people, particularly strangers who are clueless about disabilities, think that it’s perfectly understandable that as a blind person I live in a care facility. This misconception often feels as uncomfortable to me as the idea that I am or should be independent. I used to want to educate people that most people who are just blind, can live independently. I no longer do this though. Not only is it none of random strangers’ business that I’m not just blind, and isn’t it my obligation to educate, but I might also be adding to the stigma I fought so hard against as a teen.

By this I mean the National Federation of the Blind’s philosophy that blindness shouldn’t hold you back. It in fact used to say that the average blind person is just as capable as the average sighted person. That led to the idea that, unless you had severe or multiple other disabilities, you were to be pushed to achieve whether you could or wanted to or not. That just doesn’t work for me and it doesn’t work for many blind people.

#Blogtober20

Millennium: Growing Up Blind in 2000 #Blogtober20

Posted on by Astrid

I’m a bit late to publish my #Blogtober20 post today. Well, not as late as yesterday, but then I already had a post up in the afternoon. Today’s prompt is “Millennium”.

Let’s see… we’re now 20 years into the new millennium, which I realize isn’t even the “new” millennium to some adults right now, as they were born in 2000 or later. I always find it surprising that there are people who will be legally old enough to vote in next year’s national election who weren’t even born when politician Pim Fortuyn was murdered on May 6, 2002. Yeah, I’m getting old!

In 2000, I turned fourteen. I was in my first year at a mainstream grammar school. I had already decided I hated it, but my parents and teachers had decided that, if I failed, I’d fail within the first three months and those were up. Woohoo, my mainstream education was a success! Okay, it was, since I did graduate with pretty good grades in 2005, but yeah.

In January of 2000, I suffered a bad case of the flu. I rarely got the flu back then and still get it only once every five years or so, so I remember. In fact, I’m not 100% sure of this but I think it was my only time being off school sick in my entire grammar school career.

In February, my outreach teacher for the visually impaired came to talk to my classmates. They had already decided they didn’t like me one bit. In fact, when the teacher asked casually what having me, a blind student, in their class evoked in them, they didn’t think of a single positive. They started saying that I was being favored by the teachers. They also resented the need to help me get around. This instilled in me the feeling that I had to make up for my blindness in some way by being extra, well, anything.

I had read a book called Het instituut (which translates to The Institution) by blind comedian Vincent Bijlo in 1998. This book is about a boy who goes to a boarding school for the blind and his teachers constantly instill in him the idea that the “sighted school” is really hard and that he’ll need to compensate for his sight loss. For all I knew, my parents and teachers at the grammar school agreed: I was an inherent burden due to my blindness unless I showed my classmates I was more independent, nicer, more hard-working and in any way better than them. Then when I tried to work hard and got good grades, my classmates decided I must be favored by the teachers.

My idea about myself as an inherent burden on the world around me due to my blindness didn’t change till I went to an international computer camp for the blind in 2002 and discovered the English-language Internet in that same summer. It never completely disappeared though.

Later in the year 2000, my classmates started openly bullying me. Again, my parents and teachers blamed me. I was too dependent, too unsociable, too much of a burden in general. I had ruined the only friendship I had developed (which in hindsight was based on pity mostly) by getting my “friends” an only average grade in a music performance in October. Though these girls didn’t actively bully me, they mostly ignored me.

I realize, looking back, that the attitude towards people with disabilities was generally very hostile back in the late 1990s and early 2000s, when I was growing up. I mean, I bullied a girl with a visual and intellectual impairment on the special needs bus to the school for the blind in the late 1990s. Though my parents disapproved of it, both they and my teachers didn’t do much to stop me. When this girl was dying of a brain tumor, my parents even openly criticized her religious parents’ hope that the girl would miraculously survive.

I can only hope that, with more children with significant disabilities being mainstreamed nowadays, that attitudes have changed.

#Blogtober20

This Is Me: Beyond the Labels #Blogtober20

Posted on by Astrid

A few days ago, I discovered Blogtober, a month-long event aimed at bloggers writing a post everyday during the month. There are prompts for each day of the month. They’re based on song titles, but you can do whatever you want. You don’t even have to follow the prompts! The first prompt is “This Is Me”.

So, who am I? When introducing myself, I tend to focus heavily on my labels. I tend to say that I’m blind and autistic and that I have mild cerebral palsy. I tend to say that I live in a care facility. I tend to say that I don’t work, but do day activities at my facility. Then again, are these the things that define me?

I could also be focusing on my passions. I am a blogger. I love to read memoirs and young adult fiction. I love to make soap and other bath and body care products. I am interested in aromatherapy. I am passionate about mental health and disability rights.

These are more “me” than my disabilities, but they’re still labels. Who I am at the core is not a blind or autistic person, or a blogger even.

Still, it is hard to define myself beyond the labels. Here are, however, a few things I think make me me.


  • I am open to new experiences. For example, I love to discover new hobbies. I am also open-minded to differences in people’s identity.

  • I am passionate. When I have an idea in mind, I can truly focus on it for a while. This means I can really be enthusiastic, but it also means I tend to perseverate.

  • I am sensitive, both to emotions and to physical stimuli. This may or may not be a positive characteristic, depending on how much I can handle on a given day.

  • I am intelligent. This is often the first positive quality people mention about me and I tend to hate that. After all, my IQ was often used to show that I should be able to solve my problems in other areas. Now that I am in an environment that doesn’t judge people by their IQ – I live with people with severe to profound intellectual disability -, I tend to appreciate my intelligence somewhat more.

  • I am a go-getter. Some people would disagree, because I have very poor distress tolerance and because I haven’t achieved their goals for me. They see the fact that I’m in a care facility and not working as a sign that I’ve given up. I haven’t. I have just focused on my own true needs and desires.

What are some things that make you uniquely you?

#Blogtober20