Some Might Say: Judgments About Me #Blogtober20

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.


The Kindness of Strangers

Okay, it’s past 2:30AM and I just said I wasn’t going to blog right now, but CrunchityFrog’s prompt for today (well, yesterday) has me thinking. This is supposed to be a daily prompt thing, so I might join in more often. Anyway, the prompt is to write about the kindness of strangers.

I’ve probably written many times already about overbearing, intrusive strangers. Particularly when I was a teen, I didn’t realize that my autistic behavior (of which I was unaware that it was autistic) combined with my blindness often caused people concern. I am more appreciative of people’s attempts, even awkward ones, to help now. That probably changed on the evening of November 2, 2007.

Okay, I’ve shared the story of my mental crisis probably more often than anyone cares to know. Today I’d like to focus on the kindness of the people who helped me stay alive and safe.

As regular readers of my blog will know, I was in a suicidal crisis that evening. I had left the training home I was a former resident of and had hoped to find safety in, because I was told the staff had no responsibility for me and I was to leave.

I took the bus to the city’s train station, talking into my former care coordinator’s voicemail. I told her I was going to take my life that night. I was completely unaware that people could hear me until a woman across the aisle from me started to talk to me. She told me that the bus driver had heard me, which initially only caused greater panic. She kept saying over and over again that he was getting help for me. (“Help”, of course, came in the form of the police, as is customary here in the Netherlands if someone’s safety is in question.) I was in utter shock, constantly crying and very overwhelmed. I am forever grateful for this woman’s kindness. And of course for the bus driver’s. It most likely, after all, wasn’t within his duty to report his concerns to the police.

Looking back, I realize I rightfully worried random people on the streets many times before and they were kind enough to help. Even if “help” meant to call the police. My parents often felt that people were just stupid, assuming that a blind person shouldn’t be traveling independently. Some were, indeed, but in some cases my parents were stupid, assuming that I was just blind.

Millennium: Growing Up Blind in 2000 #Blogtober20

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.


This Is Me: Beyond the Labels #Blogtober20

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?


A Sunny Monday

Hi all on this beautiful Monday! It’s mid-September but the temperatures rose to 29°C here anyway. Tomorrow we’re supposed to get even hotter weather, with temperatures rising to 34°C in some places in the south of the country.

I went for three walks today. In the morning, my regular day activities staff was in a meeting, so a substitute came. She took me on a long’ish walk. I think we took over half an hour. Then in the afternoon, I took my usual 20-minute walk when the regular staff had returned.

I was originally planning on taking some pictures, but ultimately I didn’t really have the courage. That little voice that says as a blind person I shouldn’t be interested in visual stuff like photographs, was pretty prominent in my mind.

In the evening, I took another longer walk. The staff who took me pointed out that there were some cows real close. I asked her to take a picture with my phone. Both Seeing AI and Envision, my two image description tools on my phone, didn’t get beyond calling it livestock, but my iPhone itself did identify cows in the picture.

Ultimately, I took over 12K steps so far today. This gives me an excuse to take it easy tomorrow, when it’s going to be so hot. I might make a soap then or maybe I’ll try out the matcha green tea in a smoothie. I doubt I’m going to try it as regular tea, as I’ve heard it tastes pretty bitter then.

I may also visit the sensory garden attached to the day center. I went there some weeks ago and loved smelling the herbs. There’s a birdcage there too, although at the time the birds didn’t make a sound.

I may try to take some pictures myself. What do you think? As a blind person, should I be interested in pictures, and if so, is it worth it if I try to take them myself? I mean, would you like to see more pictures on this blog even if they’re not good?

The Ordinary Moments

Something I Struggle With

A few weeks ago, Marquessa over at The Next Chapter started a writing challenge to get herself motivated to write everyday. Yesterday, I saw that Cyranny had joined in. Cyranny started with the first prompt. That one didn’t appeal to me, so I will go to the second. It is to share something you struggle with.

Regular readers may be able to guess what I’m going to share. It wasn’t the first thing that came to mind, but I got inspired by Marquessa’s post. She shared that she struggles with being called “pretty”. She then goes on to say that brains matter more to her than beauty. Well, I wouldn’t exactly say I’m the opposite, but I do struggle with being called “intelligent”.

As a child, I was often called intelligent. My parents loved bragging about my so-called genius. After I had an IQ test at age twelve, this became even worse. The IQ test, though not the first one administered to me, was the first one about which the assessor actually told my parents the exact IQ outcome. My performance IQ can’t be measured because I’m blind, but my verbal IQ was identified as being 154 on the Wechsler scale. This means I was supposedly within the highly gifted range.

As a preteen and early teen, I didn’t mind my parents bragging about this three-digit number as much. I was proud that, according to my mother, I had the same IQ as my father. Now the only time my father had an IQ test administered, he at least told me that was in the pub with a psychologist friend and he was rather drunk. I’m assuming his real IQ may be higher.

As I grew older though, my apparent high IQ more and more stood in the way of my being myself. It was frequently used by my parents and professionals to “prove” that I should be capable of solving my own problems in social situations. This got me interested in the concept of giftedness as asynchronous development. Later, I was diagnosed with autism. Still, my parents reasoned that I was just extremely intelligent.

The reason I struggle greatly with being called “intelligent” is the assumption that I am smart enough to solve non-intellectual problems. This may be so in most gifted people – I think I remember recent research disproves the theory of asynchronous development -, but it isn’t the case for me. Like I mentioned a few weeks ago, my emotional level is equivalent to someone approximately 18 months of age.

Last year, my IQ was used against me to deny me long-term care. I mean, due to my multiple disabilities and low emotional functioning level, I do best in a care setting normally catering towards severely intellectually disabled people. Because of my IQ though, I can’t get funding based on developmental disability. I am lucky that I’m blind in this respect, because I ultimately did get funding based on that.

Contrary to Marquessa, I do not struggle with compliments about my intelligence because I don’t agree with them. I mean, the IQ test I took at age twelve is rather outdated now and I scored much lower when I took another one in 2017. However, I still know I’m indeed intelligent. That being said, that’s not all I am. In the future, I’d like to be able to take pride in my intellectual abilities without them triggering the fear that I’ll need to be good at other things too.

I Am Overwhelmed

Yesterday I sat in front of my computer for an hour or more typing up a blog post, only to erase it again because I couldn’t find the proper words to finish it. Today I’m trying again.

I am horribly overloaded. To be honest, even the mere thought of having to write a blog post, adds to that. So why do I do it? I guess this post won’t get many views or much engagement at all, so why bother? Then again, I may be able to get my rollercoaster of emotions to slow down a bit if I write stuff down.

Last Saturday, I attended an online meeting of CP Netherlands, the national charity for people with cerebral palsy and their parents. I wasn’t sure whether to attend, as I’m not 100% sure my mobility impairment is severe enough to count as CP. Of course, the other attendees advised me to get a referral to a rehabilitation physician to find out.

Of course, just self-understanding isn’t a reason to get assessed for CP as an adult. However, I’m noticing that my mobility gets somewhat worse and I experience more pain. This could be my being overweight, of course. I will also get orthoses soon to help with the position of my feet. This might help.

In the meeting and later in the CP Facebook group, I shared how all my past professionals said my issues weren’t due to the disability they were assessing for. For example, the occupational therapist from the blindness agency said that my difficulties weren’t due to blindness. The OT for the psych hospital said my motor ability was more or less fine. At least, I didn’t have significantly less strength in my left hand than my right. The neurologist consulted when I earlier complained of worsening mobility, said it wasn’t my hydrocephalus either or if it was, my issues were not severe enough to warrant risky surgery. I agree. However, ultimately, my psychologist concluded everything was fine and I was just being dependent.

I asked my staff to talk to the physician for my facility and maybe the physical therapist about my mobility impairment. I after all do experience worsening pain and what may be spasticity. I’ll hopefully hear back soon.

Then today I experienced terrible sadness. I was overwhelmed by some sounds other clients made in the living room, but felt bad going to my room. My assigned staff said maybe I expect too much of myself. I mean, I’m half convinced that I’m deteriorating, which my staff doesn’t see. Maybe I indeed need to take a break. Lower the bar on my step goal now that my broken Fitbit won’t notice anyway. Stop wanting to write a blog post everyday, or really more than one. Be content with just two or three 20-minute walks a day and relaxing the rest of the day. I’m not sure. This feels so much like giving up.

Not Their Baby Anymore

Tomorrow is my 34th birthday. My parents came for a visit today. My mother, for the first time in so many years, didn’t openly reminisce about the time I was a baby. In fact, she seemed rather relaxed.

I was born three months prematurely. My due date would’ve been September 29, 1986 instead of June 27. Most if not all of my multiple disabilities are the direct result of my premature birth. I mean, it’s controversial to say this about autism, as most people in the autistic community claim it’s purely genetic. I have some genetic risk factors too, in that both my father and paternal grandfather are/were of the broader autistic phenotype. We can never be sure though how much my genetics contributed and how much the brain bleed and subsequent hydrocephalus I suffered did. In any case, my blindness and mild cerebral palsy are both due to my premature birth. My blindness is caused by an eye condition called retinopathy of prematurity and my CP is due to the aforementioned brain bleed.

As much as I sometimes seek to discuss my early childhood with my parents, I’m happy neither brought up the topic this year. They were in some rather brutal ways confronted with my current life. After all, due to the COVID-19 measures, I couldn’t be at my husband’s home when they visited. This was one of the first times my parents actually visited me in a care facility. When I was in the psychiatric hospital, either they’d visit me at my student apartment or later at my and my husband’s home. I think there were a few years, probably 2010 and 2011, when I had neither, but they always managed to take me out to some restaurant or something then. They were probably confronted with care facilities a few more times, but not in the past eight or so years.

A fellow resident tried to hug my mother when she came in. She didn’t comment. She did ask at some point whether my fellow clients can talk and I honestly replied that most can’t. When I told her there are clients in other homes I can talk to, she did ask why I didn’t live there then. I just said I didn’t have the right care profile for those homes or there was no available room.

Honestly, I’m totally relieved that my parents didnt’criticize me. I know they don’t agree with my being in a care facility. Still, they probably realized I’m not their little baby anymore.

Written for Fandango’s One-Word Challenge (#FOWC): baby.

I Saw…: Coping with Vision Loss in the Age of Social Media

Today’s optional prompt at Life This Week is I Saw…. We are supposed to share photos of what we saw lately. This got me thinking. I saw… nothing really, as I am blind.

I have been totally blind with some light perception since the age of eighteen or so. At age eight, my parents decided to give up on my eyesight, so all reports say I went blind at that age. I didn’t. Legally, yes, but I’ve always been legally blind. Functionally, maybe. I started learning to read Braille at the age of seven. Then again, as a person who lost his vision gradually later in life told me, going from 20/1000 vision to none is worse in some ways than going from 20/40 to 20/1000.

I have more or less accepted my blindness now. Even so, with just a tiny bit of light perception left, I still use it. Maybe I shouldn’t, but I do.

One of the most annoying aspects of blindness for me, as a blogger, is being unable to take pictures. I know some blind people have learned to take pictures, but my parents always instilled in me that photos are for the sighted and I shouldn’t want to pursue a visual activity like this. For this reason, I don’t feel comfortable trying to learn to take pictures. I mean, I feel pretty arrogant for believing I could even ever learn to take pictures.

I did mention to my staff that I may want a tripod or selfie stick or whatever for my birthday. Then again, I fear I’ll knock it over and ruin my phone if I’m not careful.

Maybe I need to ask other totally blind people how they take pictures and how they make sure they are blog-worthy or whether they don’t care.

I remember one day, when I was at the blindness rehabilitation center, the staff asked each of the clients in my group what would be the most important thing we’d do if we regained our sight. Many said they’d be able to travel more independently. I said I’d go into nature and enjoy the sights. Right now, I’d say I’d take lots of photos for my blog.

A Twelfth Grade Memory

Last Monday, I already shared some memories from the year 2003. Today, one of the prompts over at Mama’s Losin’ It’s Writer’s Workshop is to share a twelfth grade memory.

My senior year of high school was the year I was supposedly planning on going to university after graduation. I knew this was going to be hard, but my aversion to going to college straight out of high school, didn’t really form. Besides, I had no idea what else I was going to do. I remember one day, August 31, 2004, one of the first few days of the school year. I had already come out as dissociative (multiple personality) on my blog in March, but had only been aware of three alters at the time. That day, Carol, who was up to that moment my assertive helper part, gave up and a new one, who called herself Clarissa, emerged.

I wasn’t aware at the time that what I was experiencing was an actual mental health diagnosis, mind you. A friend of mine had told me about dissociative identity disorder after I first came out in March of 2004, but I was still in denial. Part of the reason is that one criterion of DID is amnesia, which we rarely experience.

In March of 2005, my high school tutor had arranged for me to see a blindness rehabilitation center psychologist. The high school tutor, I must say, read my blog, so he knew about the parts, including Clarissa. He had told the psychologist, who obviously immediately thought of DID. She started to ask me all sorts of questions, all of which I either circumvened or answered negatively to. I knew, after all, that, if I’d gotten the psychologist to think I had DID, I wouldn’t be accepted into the rehabilitation program.

In hindsight, of course, I wish I would’ve been more honest. I knew I didn’t have amnesia or time loss, but I did have most other symptoms of DID, some of which I hadn’t become aware of being abnormal. It took over five more years before I was diagnosed with DID.

In the end, I was accepted into the rehabilitation program. I started on August 22, 2005.

Full disclosure: after being diagnosed with DID in 2010, I lost my diagnosis again in 2013. I am pretty sure I don’t have full-blown DID, but probably do have some dissociative disorder.

Mama’s Losin’ It