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.

#Blogtober20

Dropping the Mask: Does It Take a Diagnosis? #TakeTheMaskOff

Today, the theme for #TakeTheMaskOff is diagnosis or self-discovery and its effects on masking. This is applied mostly to the experience of being autistic, but I can relate to it from a trauma survivor perspective too.

I haven’t yet read any of the other contributions for this week, but I assume the idea behind this challenge is that discovering you’re autistic, either through professional diagnosis or not, can help you drop a facade.

This is definitely true for me. When I was first diagnosed with autism in 2007, my staff claimed that I was using it as an excuse, because I reacted more to for example loud noises than I’d done before diagnosis. Similarly, my parents claimed that I was over-protected by the staff who felt I’m autistic and this led to my psychiatric hospitalization in November of that year.

To be honest, yes, I may’ve started to use autism more as an explanation for my behavior once I was diagnosed than I did pre-diagnosis. Note that I say “explanation”, not “excuse”. I don’t feel I need an excuse to act like myself, unless acting like myself were harming other people. Saying that we use autism as an excuse for our behavior is really saying that we should conform to non-autistic standards of behavior at any cost. Autism is an explanation for why I can’t conform to these standards, but even if I could, that doesn’t mean I should.

Then again, once my autism diagnosis was taken away in 2016, I did feel like I needed an excuse. And so did many other people. I was kicked out of autism communities that I’d been a valued part of for years. Suddenly, I’d been faking and manipulating and “acting autistic-like” all those years rather than just having been my autistic self. One Dutch autistic women’s forum’s members and admins were notorious for spinning all kinds of theories on why I’d been pretending to be autistic all those years and had finally been unmasked.

<PAnd at long last, I started to believe these people. I started to believe that self-diagnosis may be valid for other people, but it isn't for me. I started to wonder whether my parents were right after all that I'd been fooling every psychologist and psychiatrist before this one into believing I'm autistic.

This process of self-doubt and shame led to my first real episoede of depression. After all, if I’m not autistic, why did I burn out and land in a mental hospital? I’d been diagnosed with dependent personality disorder by the psychologist who removed my autism diagnosis, so were my parents right after all? I suddenly felt like I needed an excuse to act autistic-like, as if being autistic is indeed less than, not just different from being neurotypical.

I sought an independent second opinion and was rediagnosed with autism in May of 2017. I still am not cured of the idea that it takes a professional diagnosis to “excuse” a person from acting non-autistic. I don’t apply this to other people, but I do still apply it to myself and that’s hard.

I use this blog to counteract this self-stigmatizing attitude. This, after all, also applies to my status as a trauma survivor. I got my autism diagnosis back, but I never got and most likely never will get my trauma-related diagnoses back. I still mask, hiding my trauma-related symptoms when I can. And that’s not usually hepful in the long run.

An Eighth Grade Memory

I’ve been meaning to write a lot, but I can’t. I am having a lot of memories. That’s what they’re supposed to be. I already survived and am now safe and an adult, age 32, living with my husband. I don’t care, this pretty freakin’ hurts. One of my inner teens, Karin, hurts the most.

On November 17, 2000, I hid under a coat rack during recess. I don’t even know why. I mean, yes, I was feeling miserable and lonely. Kids in my class were bullying me and I had no friends. I was mainstreamed at the time, being the only blind student in my school.

My French teacher found me and called for the coordinator. My tutor had just gone on sick leave the day before and never returned to our school. The coordinator would act as my tutor from that point on. He sat across from me in the room where I’d been hiding under the coat rack. He held my hands and said: “Is something wrong?” I couldn’t communiicate. Not speak, not move, nothing. I was completely frozen.

Several months later, by the time my now tutor had become aware that I was feeling left out and lonely and being bullied by my classmates, he organized a class conference. Without me there. My classmates were allowed to say what they didn’t like about me. Then I was supposed to change those things. I was supposed to take better care of my personal hygiene and develop better social skills, so that I’d be less curt.

My tutor died in 2016. He cannot read this now, but my old tutor, the one who went on sick leave just before the coat rack thing, can. She found my Dutch website last year. Granted, it has my real name in the URL and this one doesn’t, but still. Maybe I shouldn’t write this, or publish this. But I want to. I want to get this off my chest.

I want to show that it’s not okay to blame a bullying victim for being bullied, even if the victim “elicits” it by acting weird. It’s good to teach a child about social skills and personal hygiene. I won’t deny that. It’s quite another thing to link that to bullying and say “You bring it onto yourself”. That’s what many people around me did say. That’s victim-blaming and it’s not okay.

Another thing I want to say is, if you wouldn’t subject a non-disabled student to something, chances are you shouldn’t subject your disabled students to it. Another boy in my class was being bullied too. My classmates asked for a class conference similar to the one held about me. The boy didn’t want it and this was respected. I was never even asked whether I wanted a class conference, because apparently, being blind, I was so special that I shouldn’t have a say. For clarity’s sake: I think class conferences like thsi one are an example of victim-blaming whether the bullied student agrees to them or not.